BLOOD BORNE VIRUSES

A RESOURCE PACK FOR PRIMARY AND COMMUNITY

HEALTHCARE STAFF IN LOTHIAN

Written by Euan MacLeay, Anne Whittaker, Ewen Stewart

Steven Maxwell and Judith Craven

Primary Care Facilitator Team NHS Lothian

Substance Misuse Directorate Woodlands House

Astley Ainslie Hospital Edinburgh, Scotland, EH9 2TB

Published by NHS Lothian©2014

Blood borne virus resource pack 2014 © NHS Lothian 2.

CONTENTS (Crtl + Click on links or entries to be taken there and Alt+Left Arrow key to return) CONTENTS.........................................................................................................................2 INTRODUCTION .................................................................................................................4 BACKGROUND AND EPIDEMIOLOGY.............................................................................6

HIV (HUMAN IMMUNODEFICIENCY VIRUS)................................................................6 HEPATITIS C..................................................................................................................8 HEPATITIS B ..................................................................................................................9 HEPATITIS A ..................................................................................................................9

TRANSMISSION ...............................................................................................................13 SUMMARY OF RELATIVE RISKS OF TRANSMISSION .............................................14 HIV TRANSMISSION....................................................................................................15 HEPATITIS C TRANSMISSION....................................................................................15 HEPATITIS B TRANSMISSION....................................................................................16 HEPATITIS A TRANSMISSION....................................................................................17

SIGNS AND SYMPTOMS .................................................................................................20 KEY SIGNS AND SYMPTOMS OF ALL BBVS.............................................................21 HIV DISEASE PROGRESSION....................................................................................21 HEPATITIS C DISEASE PROGRESSION....................................................................24 HEPATITIS B DISEASE PROGRESSION....................................................................26 HEPATITIS A DISEASE PROGRESSION....................................................................27 THE PSYCHOLOGICAL AND SOCIAL IMPACT OF BLOOD BORNE VIRUSES........28

PREVENTION (Risk Reduction Strategies and Immunisation)....................................34 SECTION LINKS FOR PREVENTION..........................................................................34 HEPATITIS A AND B IMMUNISATION ('VACCINATION') TARGET GROUPS ...........35 IMMUNISATION SCHEDULES FOR HEPATITIS B AND A .........................................36 REDUCING THE RISK OF SEXUAL TRANSMISSION OF BBVs................................38 NEGOTIATING SAFER SEX ........................................................................................39 REDUCING THE RISK OF TRANSMISSION OF BBVs THROUGH INJECTING DRUG

USE..........................................................................................................................40 OCCUPATIONAL INJURIES ........................................................................................42 POST-EXPOSURE PROPHYLAXIS (PEP & PEPSE)..................................................43 RISK REDUCTION INFORMATION FOR PEOPLE WHO KNOW THEY ARE

INFECTED...............................................................................................................44 TESTING ...........................................................................................................................45

WHY TEST FOR BLOOD BORNE VIRUSES...............................................................47 WHO SHOULD BE OFFERED A TEST?......................................................................49 RISK ASSESSMENT ....................................................................................................50 RAISING THE SUBJECT OF BBV TESTING...............................................................51 THE PRE-TEST DISCUSSION.....................................................................................52 UNDERSTANDING THE TESTS..................................................................................53 WHICH TESTS TO ASK FOR.......................................................................................54 GIVING THE TEST RESULT........................................................................................57

MANAGEMENT and CARE of HIV, HEPATITIS B and C ...............................................62 PRIMARY CARE...........................................................................................................62 REFERRAL TO SPECIALIST CARE FOR BBV INFECTIONS.....................................63 HIV INFECTION............................................................................................................64 HIV-RELATED CONDITIONS.......................................................................................66 HEPATITIS C INFECTION............................................................................................71 PHARMACOLOGICAL TREATMENT...........................................................................74 HEPATITIS B INFECTION............................................................................................76

SOCIAL CARE..................................................................................................................87 SECTION LINKS FOR SOCIAL CARE.........................................................................87

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SEXUAL AND REPRODUCTIVE HEALTH ......................................................................92 DISCUSSING SEXUAL HEALTH ISSUES AND ONWARD REFERRAL .....................94 ASSESSMENT OF SEXUAL HISTORY .......................................................................95 REDUCING THE RISK OF SEXUAL TRANSMISSION OF BBVs................................95 ADVICE FOR BBV POSTIVE INDIVIDUALS ON MAINTAINING SEXUAL HEALTH ..99 LEGAL ISSUES ............................................................................................................99 REPRODUCTIVE HEALTH ........................................................................................100 CONCEPTION AND PREGNANCY............................................................................101

PREGNANCY (incl Post-Natal Management) ..............................................................107 HIV AND PREGNANCY..............................................................................................108 HEPATITIS C (HCV) AND PREGNANCY...................................................................109 HEPATITIS B (HBV) AND PREGNANCY...................................................................111

INFECTION CONTROL...................................................................................................115 CLEARANCE FOR HEALTHCARE WORKERS.........................................................116 STANDARD INFECTION CONTROL PRECAUTIONS ..............................................116 BODY FLUID SPILLAGE PROCEDURE ....................................................................116 MANAGEMENT OF NEEDLE-STICK AND OTHER CONTAMINATION INJURIES ..117 POST-EXPOSURE PROPHYLAXIS AND POST-SEXUAL EXPOSURE (PEP and

PEPSE)..................................................................................................................117 SOCIAL CONTACT/HOUSEHOLD TRANSMISSION GUIDANCE ............................117

LIVING WITH A BLOOD BORNE VIRUS .......................................................................118 COPING WITH A DIAGNOSIS ...................................................................................119 WHOM TO TELL.........................................................................................................119 INFORMATION ON STAYING ‘HEALTHY’.................................................................120 STIGMA AND DISCRIMINATION...............................................................................122 EMPLOYMENT...........................................................................................................124 IMMIGRATION............................................................................................................124 TRAVEL AND TRAVEL INSURANCE ........................................................................125

PALLIATIVE CARE.........................................................................................................127 WHAT IS PALLIATIVE CARE?...................................................................................127 PALLIATIVE CARE IN HIV/HEPATITIS......................................................................127

SERVICES.......................................................................................................................132 APPENDICES .................................................................................................................138

APPENDIX A: CLINICAL INDICATOR DISEASES FOR ADULT HIV INFECTION....139 APPENDIX B: RISK FACTOR CLASSIFICATION – A ROUGH GUIDE.....................141 APPENDIX C: LIST OF AREAS WITH INTERMEDIATE TO HIGH SERO-

PREVALANCE.......................................................................................................142 APPENDIX D: COMPONENTS OF A BBV RISK ASSESSMENT..............................143 APPENDIX E: YOUR JOURNEY THROUGH HEPATITIS C CARE...........................145 APPENDIX F: SAFER SEX AND BLOOD BORNE VIRUSES (BBVs) LEAFLET.......146 APPENDIX G: INJECTING DRUG USE AND BLOOD BORNE VIRUSES LEAFLET 148 APPENDIX H: HCV TESTING FLOW CHART ...........................................................150

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INTRODUCTION

Welcome to the Blood Borne Virus Resource Pack. The pack contains important information regarding HIV, Hepatitis C, Hepatitis B and Hepatitis A. NHS Lothian is committed to providing good quality evidence based care and treatment to people infected with and/or affected by blood borne viruses. This pack is aimed at healthcare staff working in Primary Care and the community. Other professionals and students, however, may find it useful too. The pack includes policy and good practice guidance on prevention, testing, treatment and care. The resource pack applies primarily to adults rather than children. All healthcare professionals may be involved in the care of patients infected/affected by HIV, hepatitis C, hepatitis B and hepatitis A. Blood borne viruses are an increasing public health concern as they are linked with multiple health and social inequalities. This resource pack is designed to provide accurate, relevant and practical information so that healthcare staff can provide good quality care and advice to patients. HOW TO USE THE RESOURCE PACK The pack is not designed to be read as a whole but we recommend specific topics should be accessed as and when required. Hyperlinks provide access to information which is cross-referenced. You can access specific information with hyperlinks on the contents page and the summary box page at the start of each section. The use of the PDF bookmark facility on the left of the page also aids easy navigation of the pack. Although every effort has been made to acknowledge source material, the resource pack is not fully referenced. Those references that are cited are recommended either for further reading or for accessing more detailed information on the topic concerned. Careful attention has been paid to the terminology used in this document in an effort to avoid language which might be considered stigmatising or inappropriate. The reference lists are. Available at: the end of each section. The resource pack is copyrighted. However, professionals are welcome to reproduce the contents in full or in part, as long as the source is acknowledged. Recommended citation: MacLeay, E., Whittaker, A., Stewart, E. Maxwell, S. and Craven, J. (2014) ‘Blood borne viruses: a resource pack for primary and community healthcare staff in Lothian’, NHS Lothian: Edinburgh. This resource pack does not replace the need for professionals to use their clinical judgement when deciding how to proceed in individual situations and acts as a guide only. Professionals should always refer to departmental protocols, service delivery guidelines and NHS Lothian policy/procedures. Feedback is very welcome, so if you notice any omissions or errors, then let the PCFT know by email lothian.pcft@nhs.net or by phone 0131 446 4422.

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Blood borne virus resource pack 2014 © NHS Lothian 6.

BACKGROUND AND EPIDEMIOLOGY

SUMMARY

• HIV, hepatitis B and hepatitis C are commonly referred to as blood borne viruses (BBV). They are found in the blood and other body fluids in varying amounts.

• Hepatitis A is a water-borne virus that is also carried in the blood.

• HIV attacks the immune system and the hepatitis viruses affect the liver. They can all lead to serious health problems.

• In some ways the viruses behave in similar ways but they have important differences.

SECTION LINKS FOR BACKGROUND AND EPIDEMIOLOGY HIV and HIV Epidemiology Hepatitis C Hepatitis B Hepatitis A The following section provides information about each virus and figures on world-wide and local prevalence. HIV (HUMAN IMMUNODEFICIENCY VIRUS) HIV is a type of virus known as a retrovirus. Retroviruses cause a copy of their genetic material to be incorporated into the genetic material of human cells. HIV ‘hijacks’ the cell's replicating machinery to make more copies of HIV. HIV prevents the immune system from working properly by infecting and disabling key cells (called CD4 cells) which co-ordinate the immune system’s response to fight infection. Important indicators of the progression of HIV are the viral load, an indication of how much of the virus is in the blood, and the CD4 count – a measurement of the number of CD4 cells in the blood. The damage to the immune system caused by HIV means that individuals become vulnerable to infections and disease. AIDS stands for Acquired Immune Deficiency Syndrome. It is a set of symptoms caused by the HIV virus, and is the result of damage to the immune system. Individuals are diagnosed with AIDS if they have had one or more specific infections known as opportunistic infections. These infections occur when the immune system has been significantly damaged by HIV. HIV EPIDEMIOLOGY Centres for Disease Control (CDC) collect data and look for patterns in infections and illnesses. In Scotland, reporting is co-ordinated by Health Protection Scotland (HPS). Access up-to-date information from HPS on their website http://www.hps.scot.nhs.uk/ or subscribe to their weekly published reports. HIV infection world-wide

• UNAIDS – the joint united nations programme on HIV/AIDS estimated in 2009 there were 33.3 million people living with HIV/AIDS

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• By the end of 2009 36% (about 5.2m) of the 15m in need of treatment in low/middle income counties were receiving antiretroviral therapy – a 30% increase from 2008

• In 2009 there were an estimated 2.6m people who became newly infected with HIV. Source: UNAIDS 2010.

In UK

• An estimated 91,500 adults were living with HIV in the UK at the end of 2010, of whom approximately 22,200 (24%) were unaware of their infection

• Retention in HIV care is high in the UK – with on average 90% of HIV diagnosed adults regularly attending services. In 2010 82% of HIV diagnosed adults in care received antiretroviral therapy

• There were 6,660 people newly diagnosed with HIV in 2010. Source: Health Protection Agency 2011.

In Scotland The cumulative total of known HIV positive cases in Scotland was 6,845 as of end September 2011.

• Men 4,947 (72%) • Women 1,898 (28%) • At least 1,817 (27%) are known to have died • An estimated 4,000 people are living in Scotland who have been diagnosed HIV

positive with around another 1,000 who have not been diagnosed. In 2010 the number of reported new diagnoses was 359 (compared with 404 in 2005, and 153 in 2000); exposure categories were identified in cases:

• Men who have sex with men (MSM) 130 (91 exposed within Scotland) • Heterosexual sex 151 (19 exposed within Scotland) • Injecting drug use 19 • The majority of cases of heterosexual transmission happened outwith Scotland with

the vast majority taking place outwith the UK. Source: Health Protection Scotland 2011.

In Lothian

• Lothian has the highest number of detected cases of HIV in Scotland (2,402 cumulative total to end September 2011) – followed by Greater Glasgow and Clyde (1,974)

• There were 92 new cases of HIV detected in 2010 in Lothian. Source: Health Protection Scotland 2011.

Trends in reports of new infections in Lothian

• Since 2000 there has been an increase in the number of reported cases of sexual transmission, both heterosexual and MSM – with MSM being the most important route detected.

• Since the late 1990s there has been relatively low reporting of transmission through injecting drug use (although there are signs that in other parts of the UK, this is an increasingly important route of transmission).

• Marked fall in AIDS-related cases and deaths since 1995 (since introduction of Highly Active Anti Retroviral Therapy). Source: Evans et al. 2006.

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HEPATITIS Hepatitis means inflammation of the liver. There are many identified types of viral hepatitis. In this resource pack the focus is on hepatitis C, B and A as they are the most common forms of viral hepatitis seen in Scotland. HEPATITIS C Hepatitis C is inflammation of the liver caused by the hepatitis C virus (HCV). First identified in 1989 (previously known as ‘non-A non-B’ hepatitis), many different strains (genotypes) of the virus exist. Hepatitis C is referred to as ‘acute’, if infection lasts less than six months, or ‘chronic’, if infection lasts longer than six months. Of those infected with HCV, up to 80% go on to develop chronic illness and the rest clear the virus naturally. Hepatitis C usually progresses slowly over a number of years. Effects on the individual vary from case to case. Most people with chronic hepatitis C will develop cirrhosis in the long term, leading to liver cancer and liver failure in some cases. There are certain factors linked to earlier disease progression – see the Signs and Symptoms section. HEPATITIS C EPIDEMIOLOGY Hepatitis C infection world-wide Hepatitis C is a global public health concern. Estimates from WHO (2002) suggest that around 3% of the world’s population have been infected with the hepatitis c virus (HCV) and world-wide there are over 170 million people chronically infected with HCV. In UK

• In 2010 the Health Protection Agency estimated that around 216,000 people are living with chronic HCV in the UK

• Prevalence of HCV among injecting drug users (IDUs) varies by region. Evidence suggests that almost half of past and current injectors have been infected with HCV. Source: Health Protection Agency 2012a and 2012b.

In Scotland

• As at end of September 2011 there were a total of 30,934 cases of HCV antibody-positivity diagnosed

• Of those, 2/3 are men and 1/3 are women • 57% reported a history of injecting drug use (90% of those with a known risk factor) • 14% are known to have died • It is estimated that around 50,000 people in Scotland have been infected with HCV

and that 39,000 have developed chronic infection • Less than half of individuals with chronic infection have been diagnosed • It is estimated that there are 1,000 – 2,000 cases of HCV acquired through injecting

drug use in Scotland every year. Source: HPS 2011a, Hutchison et al 2006.

In Lothian

• As of end of September 2011 there were 4,330 cases of HCV antibody-positivity detected second only to Greater Glasgow and Clyde with 12,567

• In 2010, 268 new cases were reported compared to 239 in 2005, and 151 in 2001. Source: Health Protection Scotland 20011a.

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HEPATITIS B The hepatitis B virus (HBV) is a blood borne virus that affects the liver, causing inflammation. HBV is referred to as ‘acute’ if infection lasts less than six months and ‘chronic’ if infection lasts longer than six months. Chronic HBV ‘carriers’ can also be ‘e’ antigen positive (HBeAg) which indicates the presence of viral protein – associated with a higher level of infectivity. Longer term, HBV can lead to cirrhosis, liver cancer, and liver failure. It is second only to tobacco as the leading cause of cancer worldwide (WHO 2002). HBV is significantly more infectious than the other blood borne viruses discussed in this pack. Many different strains of the virus exist. Immunisation against HBV is available and provides lifelong immunity in most cases. See the Signs and Symptoms section. HEPATITIS B EPIDEMIOLOGY Hepatitis B infection world-wide

• The World Health Organisation (WHO) estimates that 1/3 of the world’s population has been infected at some point – some 2,000 million people

• It is thought there are around 350 million people who are chronically infected • Around 600,000 people die annually • In areas such as south-east Asia, Central Asia, some of the Pacific rim, parts of the

Middle East, the Amazon basin, and some countries in Eastern Europe around 70-90% of the population have been infected by the time they are 40. Source: WHO 2002b, WHO (2008).

In UK

• WHO categorises the UK as an area of low prevalence of HBV infection (less than 2%) – however accurate figures are not available

• The Department of Health estimates that there are about 180,000 people in the UK affected by HBV. The Hepatitis B Foundation estimates that there over 325,000 people living with chronic HBV infection in the UK. Source: Department of Health 2002, Hepatitis B Foundation 2007, WHO 2002b.

In Scotland

• Current estimates suggest there are between 5,000 and 15,000 cases of chronic HBV

• It is likely that the number of newly acquired cases of HBV are in the range of 200-400 per year. Source: Scottish Government 2011.

HEPATITIS A Hepatitis A is inflammation of the liver caused by the hepatitis A virus (HAV). It is usually a short term illness which most people recover from in 6-8 weeks. Once the individual recovers they develop life long immunity. In very rare cases (around 1 in 1,000) people can suffer liver failure and death, usually people with pre existing liver damage – see the Signs and Symptoms section for further details. The spread of HAV is mostly by the oral-faecal route and is usually linked to poor hygiene – see the Transmission section for further details. Immunisation against HAV is available and provides life long immunity in most cases.

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HEPATITIS A EPIDEMIOLOGY Hepatitis A infections world-wide

• The virus is present world-wide and is directly linked to levels of sanitation and hygiene

• In countries with poor environmental hygiene, almost all children are infected with HAV before the age of nine

• It is difficult to estimate the prevalence world-wide due to under reporting and lack of reporting systems however the WHO estimates there are around 1.4 million cases annually. Source: WHO 2000.

In UK

• HAV was a common childhood infection in the early 20th Century but now in the 21st Century it is an unusual infection in the UK

• In 2009 there were 352 cases detected in England and Wales and 48 in Scotland. Source: HPA 2012, HPS 2012.

In Scotland

• Over the last 10 years the number of detected new cases of HAV infection in Scotland has been generally falling, with a peak in 2001 when an outbreak of HAV among injecting drug users in Aberdeen contributed to a figure of 148 cases. In 2010 there were 36 cases detected. Under-reporting is an issue as many people only suffer only mild illness so never approach their GP. Source: Health Protection Scotland 2012.

No Lothian-specific HAV data are available.

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SECTION REFERENCES Department of Health (2002) Getting Ahead of the Curve – A Strategy for Combating Infectious Diseases ECDC TECHNICAL REPORT (2010) Surveillance and prevention of hepatitis B and C in Europe McCallum, A., Evans, C., Massaro-Mallinson, M., Rostant, M. (2007) AIDS Control Act 1987 - Report 2006-2007 Health Protection Agency (2012a) Hepatitis C in the UK 2012 report Health Protection Agency (2012b) Shooting Up - Infections among people who inject drugs in the UK 2011, An update: November 2012 Health Protection Agency (2012) HIV in the United Kingdom: 2012 Report Health Protection Agency (2012) Hepatitis A Laboratory Reports and Statutory Notifications, England and Wales, 1997-2009 Health Protection Scotland (2011) HPS Weekly Report 23 November 2011 Vol 45 No. 2011/47. Available at: http://www.documents.hps.scot.nhs.uk/ewr/pdf2011/1147.pdf Health Protection Scotland (2011a) HPS Weekly Report 08 February 2012 Vol. 46 No. 2012/06. Available at: http://www.documents.hps.scot.nhs.uk/ewr/pdf2012/1206.pdf Health Protection Scotland (2012) Hepatitis A: 10 year data set. Available at: http://www.hps.scot.nhs.uk/giz/hepatitisa.aspx Hepatitis B Expert Group (2007) European Orientation Toward the Better Management of Hepatitis B in Europe. Available at: http://www.hepb.org.uk/news/archive/spring_2008_03_03/new_recommendations_from_european_hepatitis_b_expert_group Hepatitis B Foundation (2007) Rising Curve, Chronic Hepatitis B infection in the UK. Available at: http://www.hepb.org.uk/information/resources Hutchison, S.J., Roy, K.M., Wadd, S., Bird S.M., Taylor, A., Anderson, E., Shaw, L., Codere, G., and Goldberg, D.J. (2006) 'Hepatitis C Virus Infection in Scotland: Epidemiological Review and Public Health Challenges'. Scottish Medical Journal Vol 51, Issue2, pp 8-15. Available at:http://scm.sagepub.com/content/51/2/8.abstract Scottish Government (2011) The Sexual Health and Blood Borne Virus Framework 2011-2015. Available at: http://www.scotland.gov.uk/Publications/2011/08/24085708/0 UNAIDS (2013) Report on the global AIDS epidemic. Available at: http://www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2013/gr2013/UNAIDS_Global_Report_2013_en.pdf World Health Organization (2000) Hepatitis A. Available at: http://www.who.int/csr/disease/hepatitis/whocdscsredc2007/en/index.html World Health Organization (2002) Hepatitis C. Available at: http://www.who.int/csr/disease/hepatitis/whocdscsrlyo2003/en/index.html

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World Health Organization (2002b) Hepatitis B. Available at: http://www.who.int/csr/disease/hepatitis/whocdscsrlyo20022/en/ World Health Organization (2013) Global Alert and Response: Hepatitis - Fact Sheets (July 2013). Available at: http://www.who.int/csr/disease/hepatitis/en/index.html

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TRANSMISSION

SUMMARY

• The main routes of transmission of HIV and hepatitis B are sexual, blood-to-blood and mother-to-child.

• The main route of transmission of hepatitis C is blood-to-blood, especially through injecting drug use.

• Hepatitis A is mainly transmitted through the oral-faecal route and specifically linked to poor hygiene.

SECTION LINKS FOR TRANSMISSION Table showing relative risks of transmission HIV transmission Hepatitis C transmission Hepatitis B transmission Hepatitis A transmission This section looks at the way HIV, HCV, HBV, and HAV are passed from individual to individual. Although there are similarities in the routes of transmission, there are also some important differences.

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SUMMARY OF RELATIVE RISKS OF TRANSMISSION The following table shows the relative risks of transmission from a positive source for all the viruses – however, these figures must be viewed with a degree of caution as risks vary between individuals and situations. TABLE 1

Hepatitis C Hepatitis B HIV Hepatitis A

Parenteral (blood to blood)

Medium High: (if ‘e’ antigen positive)

High: Blood transfusion Medium: Sharing injecting equipment Low: Blood spill / needle-stick

Low

Sexual transmission (unprotected intercourse)

Low: less than 5% lifetime perceived risk in monogamous heterosexual couples

High: around 40% risk through sexual contact with someone with active HBV –e antigen / high DNA levels

Medium: 0.08% risk in a single unprotected vaginal sex; up to 18 times higher (1.44%) with anal sex

Low: risk through oral-faecal route during sexual contact and higher potential in MSM

Needle-stick injury from infected person

3-10% 30% 0.3% Low

Close household contact

None: avoid sharing razors, toothbrush

Low to Medium: immunise household and avoid sharing razors, toothbrush

None: avoid sharing razors, toothbrush

High: if poor hygiene Low: if good hygiene

Vertical (Mother-to-child) transmission rates with no intervention

5% (increases in co-infection with HIV)

Up to 85% 15-25% Very low risk by oral-faecal route during delivery

Vertical transmission rates with appropriate interventions

5% - no effective intervention identified. No evidence of transmission through breast milk

<5% if active and passive immunisation given to neonate

<2% using antiretroviral therapy for mother and neonate and avoiding breastfeeding

No effective intervention identified

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HIV TRANSMISSION HIV is present in blood (including menstrual blood), semen, vaginal fluids, and breast milk. The virus is also thought to be transmissible in saliva although it is known to be a far less risky route of transmission when compared to other bodily fluids (BHIVA, 2012). HIV is a fragile virus which normally dies quickly when outside the body (i-base 2007a). The main transmission routes for HIV are:

• Blood-to-blood contact • Sharing of drug injecting equipment (needles, syringes, spoons, filters, blood

contaminated water) (NAT, 2010) • Blood transfusions (unscreened blood and blood products) – risk almost nil in the

UK since the introduction of screening techniques in 1985. Possible risk of transmission during medical procedures and blood transfusion in other countries with varying adherence to infection control policy

• Very rarely through occupational accidents such as needle-stick injuries.

• Sexual • Unprotected anal or vaginal intercourse • Unprotected oral sex.

The likelihood of sexual transmission is increased when either individual has an untreated sexually transmitted infection (STI) (NAM 2006) – see the Sexual and Reproductive Health section for further details.

• Mother-to-child (vertical transmission) • Without treatment the risk of transmission during pregnancy is around 25% (UK

and Europe) • Transmission can take place while the baby is in the womb (intrauterine), but

normally happens during childbirth (vaginal delivery) or through breastfeeding • The risk of transmission can be reduced to below 2% with effective treatment and

obstetric management of the mother and baby (for further details see the Pregnancy section). Source: BHIVA, 2012.

HEPATITIS C TRANSMISSION HCV has been detected in various body fluids, however, blood has been identified as the main route of infection (SIGN, 2006). The virus on average can remain infectious for 16 hours outside of the body but this can extend to 4 days (Kamili et al 2007). The transmission routes for HCV are:

• Blood to blood • Sharing needles, syringes and all other related drug injecting equipment is an

important route of transmission. Equipment includes spoon (cooker), cups, water, filters, swabs, tourniquets, preparation surfaces and home made equipment, e.g. compass, guitar string (especially used in prison). There is a low risk of transmission shown in those who have shared straws used for snorting drugs

• Blood transfusion and blood products – since September 1991, when screening of blood donors was introduced, the risk of transmission via this route in resource rich countries has been extremely low. There are countries with varying or no screening protocols which have significant levels of HVC prevalence

• Before screening of blood in the UK, haemophiliacs accessing transfusions were exposed to HCV. This has led to a higher prevalence of hepatitis C in this group than the general population.

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• Sexual transmission (unprotected sex) • The risk of sexual transmission of hepatitis C is low. Studies of monogamous

heterosexual couples where one partner was positive for hepatitis C and the other negative showed an HCV incidence of below 1% for every 190,000 sexual intercourse acts (American Association for the study of Liver Disease, 2012)

• Increased risk of sexual transmission is linked to co-infection with HIV, increasing number of sexual partners, men who have sex with men (MSM), sexually transmitted infections (STIs), duration of relationship and chronic liver disease

• Risk increases with trauma to the vaginal and/or anal mucosa which can present in tissue tearing and the possible exchange of blood (Turner et al 2006) The anal mucosa is thought to be more susceptible to tearing than vaginal tissue giving a possible higher risk of transmission

• Risk may also increase during the menstrual period (i-base, 2007a, SIGN, 2006).

• Mother-to-child • The risk of mother-to-child (MTC) transmission in the UK is approximately 5% • There are no proven interventions to reduce the risk of MTC transmission

Screening during pregnancy may be beneficial to allow the mother to minimise risk of transmission to other adults

• There is no evidence to link breastfeeding to an increased risk of transmission but breastfeeding is not recommended if nipples are cracked or bleeding

• The risk of MTC transmission increases to 10% if the mother is co-infected with HIV – in the case of a co-infected mother, Caesarean Section is considered

• Babies born to hepatitis C PCR +ve mothers are followed up by a specialist at the Royal Hospital for Sick Children – see the Services section.

• Non-sterile medical and dental procedures

• There is a risk of transmission if equipment is not sterilised properly; this may be more likely in resource poor countries.

• Unsterile tattooing and/or body piercing

• Non sterile procedures during body piercing, tattooing, acupuncture, etc. have been associated with transmission.

• Household contact and sharing toiletry items

• Sharing razors, toothbrushes, nail scissors or other household items poses a potential risk if the shared item is contaminated with positive HCV blood.

• Occupational exposure

• Occupational injuries, e.g. needle-stick injury (risk approx. 10%) and exposure-prone procedures – see the Infection Control section.

HEPATITIS B TRANSMISSION The hepatitis B virus is transmitted by blood to blood, seminal and vaginal fluid and contamination of mucous membranes. HBV is up to 100 times more infectious than HIV and can survive for up to 7 days outside of the body. (WHO, 2012). Hepatitis B is mainly an imported infection into the United Kingdom.

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The transmission routes for HBV are: • Blood to blood

• Sharing any drug injecting equipment, i.e. needles, syringes, filters, water, spoon etc and lesser possible risk of sharing straws for snorting drugs

• Blood or blood products – all blood in the UK is screened for HBV but travellers to countries where screening is not routine may be at risk. In general the current risk of transfusion transmitted infections is very remote in the UK (HSE, 2010), although there may be variations for some ethnic minority populations living in Lothian who were born in or who travel regularly to visit family and friends in high prevalent countries.

• Sexual transmission

• Any sexual activity which involves the possibility of exchange of body fluids between individuals, e.g. semen, vaginal fluid, saliva and blood. Sexual transmission and intravenous drug use accounts for most HBV transmissions in the UK. Source: BASHH, 2008.

• Mother-to-child

• Routine antenatal screening in the UK now means this is rare. Immunisation of the baby can cut the risk to nearly zero but without intervention the risk of mother-to-child transmission can be up to 90%. Breastfeeding is deemed OK where the baby has started a course of immunisation at birth. Source: BASHH, 2008.

• Unsterile medical and dental procedures

• There is a risk of transmission if equipment is not sterilised properly; this may be more likely in resource poor countries.

• Unsterile tattooing and body piercing

• Body piercing, tattooing, and acupuncture using unsterile equipment have been associated with transmission.

• Household contact and sharing toiletry items

• HBV is easily transmittable through household contacts (e.g. children playing, sharing toothbrushes or razors etc), than compared to HIV and HCV.

• Saliva

• There are small amounts of HBV in saliva which could potentially carry a low risk of transmission if it contaminates an open wound (e.g. human bite).

• Occupational risk

• Needle-stick injury (30% risk of transmission from ‘e’ antigen positive source) • High risk during exposure prone procedures – see the Infection Control section.

HEPATITIS A TRANSMISSION Hepatitis A (HAV) is mainly transmitted through the oral-faecal route (normally from person to person or by eating food or drinking water contaminated by particles of faeces). The virus is passed in the faeces of infected individuals. Transmission is usually linked with poor sanitation and hygiene and is endemic in resource poor countries.

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The transmission routes for HAV are:

• Blood and blood products • Transmission through infected blood and blood products is extremely rare • Sharing injecting equipment and paraphernalia • Injecting drug use is linked with an increased risk of transmission. However this

can be through a combination of factors such as poor general hygiene, poor injecting practices, and exposure to infected blood through sharing injecting equipment. It is thought that the parenteral route (blood to blood) of transmission does occur, but rarely. There have been reports of sporadic hepatitis A outbreaks in injecting drug users.

• Mother-to-child

• Very low risk of transmission and some reported cases but thought to be related to the oral-faecal route during delivery.

• Sexual transmission

• Hepatitis A could be transmitted sexually through the oral-faecal route during sexual contact such as rimming (anal oral sex), fingering, fisting or oral sex after anal sex. There have been recent cases amongst men who have sex with men. Source: HPA, 2009.

• Occupational risk

• Risk to food handlers and sewage workers • Healthcare workers at increased risk, especially those working in large

institutions and residential care for people with learning difficulties.

• Household contact • High risk of transmission if there is poor hygiene – low if hygiene is good, i.e.

effective hand-washing and good sanitation during food preparation and personal grooming/toilet routines.

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SECTION REFERENCES Terrault, N et al (2013), 'Sexual transmission of hepatitis C virus among monogamous heterosexual couples: The HCV partners study', Hepatology 57(3), pp 881-889 (DOI: 10.1002/hep.26164) BASHH, BHIVA, and BIS (2008). 'Guidelines for HIV testing'. Available at: http://www.bashh.org/documents/1838.pdf BHIVA (2012). 'Guidelines for the Management of HIV Infection in Pregnant Women'. Available at: http://www.bhiva.org/PregnantWomen2012.aspx Health Protection Agency (2013). 'HIV in the United Kingdom: 2013 Report'. Available at: http://www.hpa.org.uk/Publications/InfectiousDiseases/HIVAndSTIs/1311HIVintheUk2013report/ HSE (2010). 'Advisory Committee on Dangerous Pathogens Protection against blood-borne infections in the workplace: HIV and Hepatitis'. Available at: http://www.hse.gov.uk/biosafety/diseases/bbv.pdf i-base (2013). 'Guide to hepatitis C for people living with HIV: testing, co-infection, treatment and support'. Available at: http://i-base.info/guides/wp-content/uploads/2013/11/HIV-and-HCV-coinfection-Nov2013e.pdf Kamili, S., Krawczynski, K., McCaustland, K., Li, X., Alter, M.J. (2007). ‘Infectivity of Hepatitis C Virus in Plasma After Drying and Storing at Room Temperature’. Infection Control Hospital Epidemiology 28(5), pp 519-524 NAM (2006) 'Living With HIV'. London: NAM Publications. Available at: http://www.aidsmap.com/Living-with-HIV/page/1550303/ Bernard, E.J. (2010). 'Towards a UK Consensus on ART and HIV Transmission Risk'. Available at: http://www.nat.org.uk/Information-and-Resources/NAT-publications.aspx#Prevention and Testing SIGN (2013). 'Management of Hepatitis C – A National Clinical Guideline'. SIGN 133. Available at: http://www.sign.ac.uk/guidelines/fulltext/133/index.html Turner, J.M., Rider, A.T., Imrie, J., Copas, A.J., Edwards, S.G., Dodds, J.P., and Stephenson, J.M. (2006). ‘Behavioural predictors of subsequent hepatitis C diagnosis in a UK clinic sample of HIV positive men who have sex with men’. Sexually Transmitted Infections 82(4), pp 298-300 WHO (2013). 'Hepatitis B Factsheet'. Available at: http://www.who.int/mediacentre/factsheets/fs204/en/

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SIGNS AND SYMPTOMS

SUMMARY

• Human Immunodeficiency Virus (HIV) Approximately 80% of individuals infected with HIV will have symptoms around the time of infection which resemble a flu-like illness (seroconversion illness). Late diagnosed or untreated HIV will compromise the immune system leading to development of opportunistic infections and other symptoms/signs of HIV.

• Hepatitis C An adult who has been exposed to HCV has up to an 80% chance of developing chronic HCV which in many some cases if left untreated can lead to serious liver problems.

• Hepatitis B An adult who has been exposed to HBV has around a 5-10% chance of developing chronic HBV which in some cases if left untreated can lead to serious liver problems.

• Hepatitis A Hepatitis A usually leads to a short term systemic illness from which the individual recovers after 6-8 weeks. In very rare cases it can lead to more serious liver problems.

This section outlines the signs and symptoms of HIV, hepatitis C, hepatitis B, and hepatitis A, both short and long term. An individual may be infected with a blood borne virus (or viruses) for many years before they become aware of it. One of the most important issues for individuals is early detection as this gives the option for early treatment. Early treatment is associated with an improved outcome. In many cases early diagnosis also enables the individual to consider making lifestyle changes and taking measures to prevent the onward transmission of the virus(es). SECTION LINKS FOR SIGNS AND SYMPTOMS OF BBVs Summary of all BBVs key sign and symptoms HIV signs and symptoms Hepatitis C signs and symptoms Hepatitis B signs and symptoms Hepatitis A signs and symptoms Psychological and Social Impact Co-Infection Summary on BBVs

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KEY SIGNS AND SYMPTOMS OF ALL BBVS TABLE 2

HIV Hepatitis C Hepatitis B Hepatitis A

Clinical illness at time of initial infection (acute illness)

80-90% of adults

25-35% in adults

30-50% in older children / adults

Around 50% of adults – children rarely symptomatic

% Becoming chronic carrier

100% Up to 80% 5%-10% of healthy adults

0%

Asymptomatic period

Average 10 years in UK – wide variation between individuals

Very variable, 20-30 years in some cases

Very variable for adults – 15-30 years in some cases

2-6 weeks

Progression in carriers without treatment

50% develop symptomatic disease within 10 years

5-15% progress to cirrhosis within 20 years

25% of adults develop serious liver disease

In most cases full recovery in 6-8 weeks

Treatment available – see Treatment section of this chapter for details

Antiretroviral combination therapy is very effective at suppressing and slowing the progression of HIV

Pegylated interferon and ribavirin can clear the virus in 40-80% of cases. Triple therapy with boceprevir and telaprever increases the response in people with genotype 1

Oral antivirals (tenofovir or entecavir) or pegylated Interferon is used to reduce the amount of virus in the system and slow progression

Supportive and symptomatic treatment only – no long term illness

HIV DISEASE PROGRESSION This section describes the progression of HIV and its complications if undiagnosed or untreated. HIV infection can generally be broken down into four clinical stages:

• 1. Primary infection • 2. Clinically asymptomatic stage • 3. Symptomatic HIV infection • 4. Progression from HIV to AIDS

Source: NAM, 2013. 1. Primary HIV Infection After being infected with HIV, the person may have a short illness usually known as Primary HIV Infection (PHI) or seroconversion illness. This illness coincides with the period when the body first produces antibodies to HIV.

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HIV symptoms usually include:

• Rash • Nausea

• Aches in the joints and muscles • Diarrhoea

• Fever • Fatigue

• Headache • Mouth ulcers

• Swollen glands, often in the groin Not everyone experiences the same symptoms. Symptoms are commonly attributed to another cause (tonsillitis, glandular fever). Approximately 80% develop symptoms. A small proportion of people develop a more severe illness. During PHI the viral load is high, making transmission more likely. 2. Clinically asymptomatic stage Once the acute initial infection has passed, a person may remain well for many years (without any treatment) before illness develops. In the UK this asymptomatic stage lasts for an average of 10 years with a wide variation between individuals. As the name suggests this stage is usually free of any major symptoms although the individual may have persistently swollen lymph glands. HIV is not ‘dormant’ during this stage. Progressive suppression of the immune system is ongoing and the individual can pass on infection. 3. Symptomatic HIV infection Over time the immune system becomes severely damaged by HIV. This is thought to happen for three main reasons:

• HIV mutates and becomes more pathogenic, in other words stronger and more varied, leading to more T helper cell destruction

• The body fails to keep up with replacing the T helper cells that are lost. Symptomatic HIV is mainly caused by the appearance of mild/moderate symptoms that could include:

• Unexplained severe weight loss (over 10% of presumed or measured body weight) • Unexplained chronic diarrhoea for longer than one month • Unexplained persistent fever (intermittent or constant for longer than one month) • Persistent oral candidiasis • Oral hairy leukoplakia • Pulmonary tuberculosis • Severe bacterial infections (e.g. pneumonia, empyema, pyomyositis, bone or joint

infection, meningitis, bacteraemia) • Acute necrotizing ulcerative stomatitis, gingivitis or periodontitis • Unexplained anaemia (below 8 g/dl), neutropenia (below 0.5 billion/l) and/or chronic

thrombocytopenia (below 50 billion/l). This stage is often diagnosed with the presence of some or all of the above symptoms and emergence of opportunistic infections (see Table 3) that normally the immune system could prevent. A full list of indicator conditions that should trigger HIV testing is available in the UK National HIV Testing Guideline: http://www.bhiva.org/documents/Guidelines/Testing/GlinesHIVTest08_Tables1-2.pdf

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4. Progression from HIV to AIDS Progression in duration and disease presentation varies dramatically between individuals. As the immune system becomes more damaged, the illnesses that occur become more severe, leading eventually to a diagnosis of AIDS (Acquired Immune Deficiency Syndrome). In the UK, a diagnosis of AIDS is confirmed if a HIV positive person develops one or more specific opportunistic infections or cancers and/or the CD4 count is below 200 cells/mm 3 (Common diseases are below in Table 3). For further information on diagnostic criteria see http://www.bhiva.org/documents/Guidelines/Testing/GlinesHIVTest08.pdf A linear progression through the various stages does not occur in every case. People have been known to become very ill, recover, and go on to remain well for years. A very small number of people have never required treatment for their HIV and remain well decades later. TABLE 3: Common opportunistic infections

System Examples of infection / cancer

Respiratory system Pneumocystis carinii pneumonia (PCP) Tuberculosis (TB) Kaposi’s Sarcoma (KS)

Gastro-intestinal system

Cryptosporidiosis Candida Cytomegolavirus (CMV) Isosporiasis Kaposi’s Sarcoma (KS)

Nervous system (including eye)

Cytomegalovirus Toxoplasmosis Cryptococcosis Non-Hodgkin's lymphoma Varicella zoster Herpes simplex

Skin Herpes simplex Kaposi’s Sarcoma (KS) Varicella zoster

Source: Avert, 2013. For further information on HIV see the following links: http://www.avert.org/ and http://www.aidsmap.com/hiv-basics/

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HEPATITIS C DISEASE PROGRESSION People from the point of transmission up to six months are acutely infected and chronic infection is defined as infection for six months or more. Acute infection Around 25-35% display symptoms at or around the time of infection. Symptoms at this acute stage include:

• Fatigue • Flu-like symptoms (fever, headaches, sweats)*

• Weight loss • Anxiety/Depression

• Loss of appetite • Difficulty concentrating

• Joint pains • Alcohol intolerance and pain in the liver area

• Nausea and vomiting *Often people mistake their symptoms for flu and do not realise they are infected. Chronic Infection Between 70% and 85% of individuals will go on to develop chronic infection. The remainder will spontaneously clear the virus within the first six months. All chronically infected persons are ‘carriers’ and remain infectious. Most people do not realise they are chronically infected with HCV.

• People with chronic infection may not experience ill health, even over long periods of time, whilst others experience various non-specific symptoms, particularly fatigue

• On average it takes 20 years of infection for significant liver scarring to develop • Around 5% with cirrhosis will progress to liver failure or liver cancer annually.

Symptoms of chronic hepatitis C infection may include:

• Fatigue • Fever

• Lethargy • Abdominal pain

• Loss of appetite • Nausea

• Weight loss • Poor concentration and memory

• Muscle ache and joint pain • Irritability

• Itching • Anxiety

• Headache • Mood swings Source: Hepatitis C Trust (2012). Advanced diseases related to chronic hepatitis C infection:

• Thyroid dysfunction • Liver failure

• Type 2 Diabetes • Liver cancer

• Depression • Non-Hodgkins Lymphoma

• Cirrhosis • Gall bladder disease

• Ascites, varices, encephalopathy and other symptoms related to decompensated cirrhosis

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Long term outcomes without treatment: • Some people will never develop liver disease • Some people develop mild to moderate liver damage either with or without

symptoms • The majority will develop liver cirrhosis within 20 to 40 years • A number who develop liver cirrhosis will progress on to developing HCC or liver

failure. Source: RCGP (2007).

Factors which can accelerate progression to cirrhosis include:

• Co-infection – with HIV, hepatitis B, hepatitis A • Smoking • Alcohol consumption • Weight – increased if Body Mass Index above 25 • Age at infection – (older age = faster progression) • Gender – men progress more rapidly than women • Ethnicity – two US studies demonstrate more rapid progression in non-African-

American than African-American patients. Source: SIGN (2006) and RCGP (2007).

For further guidance see the links below: http://www.sign.ac.uk/guidelines/fulltext/133/index.html http://www.smmgp.org.uk/download/guidance/guidance003.pdf

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HEPATITIS B DISEASE PROGRESSION People can be acutely (<6 months) or chronically (>6 months) infected with HBV. Acute infection Around 30-50% of adults will have symptoms in the acute phase, including:

• Nausea and vomiting • Joint pain

• Diarrhoea • Muscle aches

• Loss of appetite • Fever

• Pain in the abdomen • Rarely jaundice

• Malaise Symptoms are often attributed to other causes and often people do not realise they are infected. In rare cases (<1%), individuals will develop fulminant hepatitis, leading to liver failure. Symptoms of fulminant hepatitis include:

• High fever • Jaundice

• Marked abdominal pain • Hepatic encephalopathy (associated with coma and seizures)

• Vomiting Source: Chen and Morgan 2006; BASHH, 2008; Hepatitis B Expert Group, 2007. Chronic infection Around 5-10% of adults who are acutely infected go on to develop chronic infection. Progression to chronic infection is much higher if infected during infancy or childhood. People who develop chronic infection will become ‘carriers’ and most will remain infectious.

• Cirrhosis is irreversible scarring of the liver and can lead to toxicity that affects the brain, oesophageal varices, and fluid retention including ascites

• Up to 20% of persistently chronic hepatitis B cases will go on to develop cirrhosis • The life time risk of developing hepatocellular carcinoma with chronic hepatitis b is

between 10% and 25% • Without treatment, approximately 15% of those with cirrhosis will die within 5 years.

Source: Lundren et al, 2011; World Health Organisation, 2013. For further guidance see the links below: http://79.170.44.126/britishlivertrust.org.uk/home-2/looking-after-your-liver/viral-hepatitis-2/ http://www.bashh.org/documents/1927.pdf Hepatitis B can be prevented through immunisation – see the Prevention section.

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HEPATITIS A DISEASE PROGRESSION The course of hepatitis A can be extremely variable. Some infected individuals have only a mild illness or remain asymptomatic; children generally belong to this group and only very rarely develop jaundice. In other cases, hepatitis A is usually an acute (short-term) infection and once people recover after around 6-8 weeks they have lifetime immunity. In very rare cases, people can develop fulminant hepatitis, leading to liver failure. Acute hepatitis A infection is divided into four clinical phases: • 1. Incubation period • 2. Prodromal phase (pre-jaundice stage) • 3. Icteric phase • 4. Convalescent period

1. Incubation period This usually lasts between 15 and 50 days and the individual remains asymptomatic while the virus replicates. At this stage the virus can be passed to others even though the individual is unaware they are infected. 2. Prodromal phase (pre-jaundice stage) Normally lasts a few days and consists of any or more of the following symptoms:

• Nausea and vomiting • Fatigue

• Diarrhoea • Low grade fever

• Loss of appetite • Dark urine

• Pain in the abdomen • Pale stools 3. Icteric phase At this phase clinical features can include fatigue, vomiting, diarrhoea, jaundice and pruritus in 40% cases with jaundice. Patients often seek medical help. Fever usually improves after the first few days of jaundice. Faeces remain infectious for a further 1-2 weeks although the virus is at very low levels in the blood at this stage. Fulminant hepatitis can develop in rare cases (1 in 1,000). Studies show that injecting drug users (IDUs) who become infected with hepatitis A are more likely to progress to fulminant hepatitis. Source: Wells et al, 2006. 4. Convalescent period Recovery is usually slow and on average takes two months from the point of infection although can last up to six months. Symptoms in this phase include malaise and liver tenderness, but is usually uneventful and complete. Following infection individuals develop lifetime immunity to HAV. Source: Health Protection Agency, 2009; NHS Choices, 2013. For further guidance see the links below: http://www.hpa.org.uk/web/HPAweb&Page&HPAwebAutoListName/Page/1200660055743 www.nhs.uk/Conditions/Hepatitis-A/Pages/Introduction.aspx At risk individuals are advised to be immunised against HAV – see the Prevention section for further details.

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THE PSYCHOLOGICAL AND SOCIAL IMPACT OF BLOOD BORNE VIRUSES Prevalence levels of depression and anxiety are commonly higher in individuals with hepatitis B and C and HIV than compared to the general population. Hepatitis C is a neurotropic virus, infecting brain cells, and directly causes cognitive problems in infected individuals. Common psychological reactions can include:

• Shock, numbness and disbelief • Often experienced at time of diagnosis • In finding out about the source of infection

• Fear and anxiety of • Becoming unwell • Infecting others • Sexual activity and relationships • Other people finding out about diagnosis

• Depression from • Altered self-image and low self-esteem • Prolonged illness or treatment failure

• Anger • At discovering source of infection • As part of grief reaction • Towards medical profession for lack of

‘cure’

• Uncertainty about • The future • Treatment success • Who will look after children if they become

ill or die

• Loss off • Healthy identity • Future plans and aspirations • Sexual freedom • Employment and income

• Grief • Coming to terms with chronic illness, death and dying

• Losing other HIV/HCV positive friends, partner or children

• Guilt • In finding out that a sexual partner or children are infected

• Stigma • In family, community, culture • At school or place of work

• Discrimination with • Insurance and mortgages • Travel and employment opportunities • Access to treatment

Source: NAT, 2013; Grundy and Beeching, 2004; Tompkins, 2005. For further guidance see the link below: http://www.nat.org.uk/Information-and-Resources/New%20publications.aspx#healthandsocialcare Psychosocial support is offered by a number of agencies throughout Lothian. See the Services section for details.

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CO-INFECTION SUMMARY

• Co-infection increases the risk of transmission.

• Individuals with HIV, hepatitis B, or hepatitis C are likely to experience more severe symptoms if infected with hepatitis A and progression of hepatitis B and C is accelerated with the presence of HIV.

• Testing for all blood borne viruses is advisable if at risk or already diagnosed with a BBV.

• Progression of hepatitis B and C is accelerated with the presence of HIV.

• Immunisation against hepatitis A and B is strongly recommended for people diagnosed with HIV and/or hepatitis C or are at risk of contracting BBVs.

• People who are co-infected tend to respond less well to hepatitis treatment and hepatitis can reduce the effectiveness of HIV medication).

In the UK around 5% to 10% of HIV positive people are co-infected with HCV. It is estimated that a similar percentage is co-infected with HBV. Source: BHIVA, 2010. Co-infection with HIV/HCV is more common in those infected through the parenteral route (blood to blood). Co-infection with HIV/HBV is more commonly seen in those infected through sexual contact. Source: BHIVA. For further guidance see the links below: http://www.bhiva.org/Guidelines.aspx http://i-base.info/guides/hepc

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HIV and HCV • Individuals who have a compromised immune system due to HIV may not produce a

detectable antibody response to HCV – a PCR test is more sensitive in these cases (see the Testing section)

• HIV appears to accelerate progression of hepatitis C • As people are living longer with HIV due to improved treatment, end-stage liver

disease from hepatitis C co-infection has become a leading cause of death among HIV-positive people in Europe

• The impact of hepatitis C on HIV disease progression is less clear although individuals who are co-infected with HIV/HCV are more likely to experience unwanted effects from their HIV medication (HCV co-infection increases the risk of liver toxicity by 2-3 times). This can lead to a drop in adherence levels and compromises treatment outcomes

• There have been several studies reporting a large number of cases of sexual spread of hepatitis C in UK among men who have sex with men (MSM) – usually HIV positive. It appears that co-infection with HIV may increase the likelihood of sexual transmission

• HIV/HCV co-infected individuals are more likely to experience severe symptoms if infected with HAV or HBV. Source: i-base, 2009; NAM, 2012; BHIVA, 2010.

HIV and HBV

• Individuals with HIV who are exposed to HBV are more likely to develop chronic HBV infection than those who do not have HIV

• HIV appears to accelerate the progression of hepatitis B • The impact of hepatitis B on HIV disease progression is less clear although

individuals co-infected with hepatitis B are more likely to experience unwanted effects from HIV medication and therefore do not seem to be able to adhere to medication regimes as well as individuals with HIV alone – this compromises treatment outcomes

• Individuals with HIV are less likely to respond to treatment for hepatitis B • HIV/HBV co-infected individuals are likely to experience more severe symptoms if

infected with HAV or HCV. Source: BHIVA, 2010; Cooper, 2007; Chun and Landrum, 2007; Lundgren et al, 2011.

HBV and HCV

• Dual infection with HBV/HCV leads to more severe liver disease, and an increased risk of progression to liver cancer compared to mono-infected individuals

• Usually there is an interaction between the two viruses leading to suppression of one and over time there can be wide variation in virus activity

• When exposed to a viral hepatitis, the risk of developing fulminant hepatitis is increased in individuals with pre-existing liver problems such as hepatitis B or C

• Adequate response for treating hepatitis C or B is more complex and less clear in co-infected individuals compared to mono-infected individuals. Source: Chu and Lee, 2008; Liu and Hou, 2006; Sagnelli et al, 2006.

HIV, HBV and HCV

• Chronic infection with HBV significantly increases risks for people with HIV and HCV • It is associated with a high risk of accelerated progression to cirrhosis, liver cancer

and increases mortality risk by 75% • Individuals are likely to experience unwanted effects from HIV medication and

therefore adherence and outcomes may be compromised • Individuals are less likely to respond to treatment for hepatitis B or C.

Source: Chun and Landrum, 2007; Teira, 2013; Sollima et al 2007.

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TREATMENT Individuals who are co-infected should be referred to the Regional Infectious Diseases Unit (RIDU) for assessment and treatment. BHIVA have produced guidelines on treatment for co-infection with HIV and hepatitis C, and HIV and hepatitis B available at: http://www.bhiva.org/HepBC2010.aspx

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SECTION REFERENCES Avert (2013) 'Different Stages of HIV'. Available at: www.avert.org Chen, S.L., Morgan, T.R. (2006) ‘The Natural History of Hepatitis C Virus (HCV) Infection’. International Journal of Medical Science 3, pp 47-52 British Association of Sexual Health and HIV – Clinical Effectiveness Group (2008), 'United Kingdom National Guideline on the Management of the Viral Hepatitides A, B,& C 2008'. Available at: http://www.bashh.org/documents/1927.pdf BHIVA (2010) 'Management of coinfection with HIV-1 and hepatitis B or C virus'. Available at: http://www.bhiva.org/HepBC2010.aspx Chun, H., Landrum, M. (2007) ‘Liver-related complications in HIV infected individuals.’ Infectious Diseases in Clinical Practice 15(1), pp 38-48 Cooper, C. (2007) ‘HIV antiretroviral medications and hepatoxicity’. Current Opinion. HIV and AIDS 2, pp 466-473 Lundgren, J., Peters, L., Eramova, I., (Eds.) (2011) 'Management of Hepatitis B and HIV Co-Infection – Clinical Protocol for the WHO European Region'. Available at: http://www.euro.who.int/__data/assets/pdf_file/0011/152012/e95792.pdf Grundy, G., Beeching N. (2004) ‘Understanding social stigma in women with hepatitis C’. Nursing Standard 19(4), pp 35-39 Health Protection Agency (2009) 'Guidance for the Prevention and Control of Hepatitis A'. Available at: http://www.hpa.org.uk/web/HPAweb&Page&HPAwebAutoListName/Page/1200660055743 Hepatitis B Expert Group (2007) 'European Orientation towards the Better Management of Hepatitis B in Europe'. Available at: http://www.ilcuk.org.uk/files/pdf_pdf_36.pdf i-base (2013) 'HIV and Hepatitis C'. Available at: http://i-base.info/guides/hepc Liu, Z., Hou, J. (2006) ‘Hepatitis B Virus (HBV) and Hepatitis C Virus (HCV) Dual Infection’. International Journal Medical Science 3, pp 57-61 NAM (2013) 'HIV transmission'. Available at: http://www.aidsmap.com/hiv-basics/Transmission/page/1412438/ NAT (2013) NAT Publications. Available at: http://www.nat.org.uk/Information-and-Resources/New%20publications.aspx#healthandsocialcare NHS Choices (2013) 'Hepatitis A'. Available at: http://www.nhs.uk/conditions/hepatitis-a/pages/introduction.aspx RCGP (2007) 'Guidance for the prevention, testing, treatment & management of hepatitis C in primary care'. Available at: http://www.smmgp.org.uk/download/guidance/guidance003.pdf

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Sagnelli, E., Coppola, N., Marrocco, C., Onofrio, M., Sagnelli, C., Coviello, G., Scolastico, C., Filippini, P. (2006) ‘Hepatitis C virus superinfection in hepatitis B virus chronic carriers: a reciprocal viral interaction and a variable clinical course'. Journal of Clinical Virology 35 (3), pp 317-320 Sollima, S., Caramma, I., Menzaghi, B., Masseto, B., Acquaviva, V., Giuliani, G., Moroni, M., Antinori, S. (2007) ‘Chronic coinfection with Hepatitis B and Hepatitis C viruses in an Italian population of HIV Infected patients.’ Journal of Acquired Immune Deficiency Syndrome, 44(5), pp 606-607 The Hepatitis C Trust (2012) 'Stages of HIV'. Available at: http://www.hepctrust.org.uk/Hepatitis_C_Info/Stages+of+Hepatitis+C/Introduction Teira, R. (2013) 'Hepatitis B virus infection predicts mortality of HIV and hepatitis C virus coinfected patients'. AIDS 27(5), pp 845-848 Tompkins, C.N., Wright, N.M., Jones, L. (2005) ‘Impact of a positive hepatitis C diagnosis on homeless injecting drug users: a qualitative study’. British Journal of General Practice 55(513), pp 263-268 Wells, R., Fisher, D., Fenaughty, A., Cagle, H., Jaffe, A. (2006) 'Hepatitis A prevalence among injecting drug users'. Clinical Laboratory Science 19(1), pp 12-17 World Health Organisation (2013) Hepatitis B: Factsheet No 204. Available at: http://www.who.int/mediacentre/factsheets/fs204/en/index.html

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PREVENTION (Risk Reduction Strategies and Immunisation) Reducing the risk of BBV transmission

SUMMARY

The risk of transmission of blood borne viruses can be reduced by:

• Immunisation against hepatitis A and B for all those at risk – (see the next page).

• Practising safer sex (i.e. using condoms if having penetrative or oral sex).

• Only using your own sterile equipment for using and preparing drugs – i.e. do not share any needles or syringes, other injecting equipment (foil, filters, tourniquet, water) or other non injecting drug use equipment (snorting equipment, pipes).

• Using sterile equipment for body piercing, tattooing (do not share ink), acupuncture and electrolysis.

• Using infection control procedures to avoid cross infection (e.g. standard precautions, hand washing, cleaning up blood and body fluids carefully).

• Post-exposure prophylaxis, e.g. after high-risk sexual exposure (PEPSE) or after occupational accidents such as needle-stick injury (PEP).

• Testing and treatment for mother during pregnancy and also for infant after birth to reduce the risk of vertical ‘mother-to-child’ transmission – see Pregnancy section.

• Only using your own personal items such as razors, toothbrushes, scissors, tweezers, which may have tiny amounts of blood and/or saliva on them.

• Good access to effective BBV treatment: effective treatment reduces the chance of an infected individual passing on a BBV.

• Good access to effective substitute prescribing such as methadone or suboxone has been show to reduce BBV risk behaviours such as frequency of injecting.

• Good access to sterile injecting equipment from Injection Equipment Provision sites (click on the link to access the list of IEP sites).

SECTION LINKS FOR PREVENTION Groups to target for BBV prevention interventions Hepatitis B immunisation target group Hepatitis A immunisation target group

Immunisation schedules for hepatitis B and A Schedule immunisation guidance for drug-using groups Immunisation – Incomplete courses

Reducing the risk of sexual transmission of BBVs Negotiating 'Safer' Sex Travel advice

Reducing the risk of transmission of BBVs in drug-using groups Promoting safer injecting practices

Occupational injuries Clearance for healthcare workers

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Groups to target for BBV prevention interventions: • People infected with blood borne viruses (e.g. HIV or hepatitis C positive, hepatitis B

‘carriers’) • Sexual partners of people with a BBV • At risk contacts, e.g. partners, children and household contacts of known infected

persons (Hep B ‘carriers’) • Drug users • Men who have sex with men • Sex industry workers and their clients • Communities and individuals from areas of high seroprevalence, e.g. African,

Chinese communities • Those serving a custodial sentence • Homeless individuals • Gypsy/Traveller community • People travelling to or from areas of high seroprevalence, e.g. Africa, Asia and

Eastern Europe (see the Background and Epidemiology section for more details). HEPATITIS A AND B IMMUNISATION ('VACCINATION') TARGET GROUPS Hepatitis B Immunisation Immunisation is recommended for:

• People infected with other blood borne viruses • People with a history or current injecting drug use or other forms of non injecting

drug use • Sexual partners and close contacts of injecting drug users • Pregnant women at risk of infection (e.g. partner is an injecting drug user) • Babies / children born into families experiencing problem drug use • Babies of infected (‘carrier’) mothers • At risk contacts, e.g. partners, children and household contacts of known infected

persons (Hep B ‘carriers’) • Individuals who change sexual partners frequently • Prisoners • Men who have sex with men • Sex industry workers and their clients • People with chronic liver disease • Individuals receiving regular blood or blood products and their carers • Patients with chronic renal failure requiring haemodialysis • Those exposed to hepatitis B infection, e.g. needle-stick injury, mucosal or non-

intact skin exposure (given PEP) • Individuals at occupational risk – including all NHS staff, laboratory staff, and others

at occupational risk such as prison staff, embalmers, etc. • Foster carers • Individuals in residential accommodation for those with learning disabilities • Those travelling to or going to reside in and families adopting children from countries

with a high or intermediate prevalence, http://www.nathnac.org/pro/factsheets/hep_b.htm

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Hepatitis A Immunisation Immunisation is recommended for:

• People infected with HIV, HCV, HBV • Travellers to countries of high prevalence • Men who have sex with men • Injecting drug users • People with chronic liver disease • Individuals at occupational risk • Those exposed to hepatitis A infection (given as Post-Exposure Prophylaxis – see

the section on PEP). Hepatitis A immunisation usually involves two doses of vaccine, given 0 and 6-12 months. Studies show that good levels of immunity are achieved even when the second dose is delayed by several years (Salisbury et al 2006). Immunity lasts for at least 10 years after the booster dose. Pregnancy is not a contra-indication for immunisation. For further information see the following two links: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/148308/Green-Book-Chapter-18.pdf. NHS Lothian Guidelines 2012 on Immunisation of Drug Users and their Families. IMMUNISATION SCHEDULES FOR HEPATITIS B AND A There are several schedules for immunisation (see Tables below). The choice of schedule depends on several factors, including adherence issues, risk factors (e.g. injecting), opportunity and local policy. For example, prisoners may get a super accelerated course so that the immunisation can be completed before release. Hepatitis B vaccine schedules Table 1 Injections Routine Schedule Accelerated

Schedule (Recommended)

Super-accelerated Schedule

1st injection 0 months 0 months 0 days

2nd injection 1 month 1 month 7 days

3rd injection 6 months 2 months 21 days

4th injection Not applicable 12 months 12 months • Super-accelerated schedule licensed for Engerix B vaccine only in adults. It may be

used in individuals aged 16 to 18 in an unlicensed capacity where rapid protection is required or compliance may be an issue

• Babies born to hepatitis B infected mothers require a pre-school booster dose of vaccine at 39 months of age.

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Hepatitis B and A vaccine schedules for immunisation of drug users All past and current injecting drug users and drug users with HIV and / or HCV should be offered HBV and HAV. Table 2

HBV Accelerated Schedule plus HAV vaccination: separate vaccines

Injections

HBV HAV

HBV & HAV (Twinrix) Super-accelerated Schedule

1st injection 0 months 0 months 0 days

2nd injection 1 month No 2nd injection 7 days

3rd injection 2 months No 3rd injection 21 days

4th injection 12 months 6-12 months booster 12 months Schedule hepatitis immunisation guidance for drug-using groups

• Past and current injecting drug users: Hep A and Hep B immunisation is recommended. Single Hep A and Hep B vaccination is recommended for use in primary care. Twinrix vaccination only contains half the amount of single Hep A vaccine. Administer an accelerated schedule of hepatitis B in order to maximise compliance and early immunity; administer hepatitis A separately in a different site. Other schedules can be considered if it encourages administration and full immunisation. The recommended and alternative schedules for drug users are shown in Table 2

• Any drug users infected with HIV or Hep C: Hep A and Hep B immunisation is recommended as shown in Table 2

• Non-injecting drug users: Single Hep B vaccination is recommended at the accelerated schedule in Table 1

• Household and sexual contacts of drug users: Single Hep B vaccination is recommended at the accelerated schedule in Table 1

• Babies born at risk of peri-natal transmission, babies born to parents with problematic drug use, babies born to those mothers with HIV: Single Hep B vaccination is recommended at the accelerated schedule in Table 1. See the hyperlink on the next page to take you to the policy for babies at risk

• Immunisation against hepatitis A and hepatitis B can be given under Patient Group Direction (PGD) – PGDs should be kept in each clinical area – ask your manager for details

• Document immunisations in patient’s notes and according to PGD • Ensure system for follow up / recall for patients who do not return to finish course • For individuals at risk of occupational exposure and patients with renal failure, check

antibody levels 8 weeks post-completion of immunisation course. A booster can be given if antibody level too low for full immunity Some people (around 10%) will be ‘non-responders’ so may never achieve immunity and should be given advice about PEP – see the section on PEP

• The ‘Green Book’ recommends offering a one-off booster around five years after immunisation for those at continuing risk of infection (Salisbury et al 2006 updated reference)

• Immunisation for hepatitis B is currently thought to provide life-long protection for the majority of the population immunised.

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Immunisation – Incomplete courses If a patient presents with a confirmed history of incomplete immunisation then give the remaining doses. In this situation there is no need to restart the course (BASHH 2008). If previous doses of immunisation cannot be confirmed then restart the course – serological confirmation of response is only recommended for those at risk of occupational exposure and patients with renal failure. See Immunisation against Infectious Disease (2013), also known as "The Green Book’’, Chapter 17 (Hepatitis A) and Chapter 18 (Hepatitis B), Department of Health. NHS Lothian (2012) has produced guidance for the immunisation of drug users and close contacts against hepatitis A and B. NHS Lothian (2012) has also produced guidance for the immunisation of babies born to parents experiencing problem drug use. BASHH, 2008, Management of the viral hepatitides A, B and C. http://www.bashh.org/documents/1927.pdf. REDUCING THE RISK OF SEXUAL TRANSMISSION OF BBVs Use the patient leaflet to initiate a discussion on Safer Sex and Blood Borne Viruses Appendix F. This leaflet can be printed, photocopied double-sided, and given to the patient. ‘Safer’ Sex

• Sexual activity within a long-term mutually monogamous relationship with an uninfected partner is safe

• In any other circumstances practising safer sex (using barrier methods) can reduce the risk of transmission of blood borne viruses, as well as other sexually transmitted infections and unintended pregnancy

• Oral (hormonal) contraceptives or Intra-Uterine Devices (IUD) can offer a good level of protection against unintended pregnancy but they do not protect against sexually transmitted infections.

Condoms

• Consistent use of condoms or Femidom (the female condom) reduces sexual transmission of BBVs as well as other STIs – see the Sexual and Reproductive Health section for a guide to proper use

• A range of condoms are available. They come in all sorts of textures, flavours, sensitivities, strengths, sizes and brands

• Oil-based lubricants such as Vaseline should not be used for anal or vaginal sex • The ‘C Card’ scheme provides free condoms and sexual health advice via a number

of outlets (e.g. health centres and community projects). Contact the Harm Reduction Team (Tel. 0131 537 8300) for a list of outlets and further information or see http://www.ccard.org.uk/.

Anal sex

• Recommend the use of a water-based lubricant (e.g. KY Jelly) • Oil based lubricants (e.g. Vaseline) should not be used as these can damage the

condom rubber

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• Stronger strength condoms (e.g. Mates Superstrong) can be used (with a water based lubricant) but the effective use of a condom is more important than the strength.

Oral Sex

• Oral sex (fellatio and cunnilingus) poses less risk for BBV transmission than anal or vaginal sex

• Risk of BBV transmission can be reduced by using a condom or a dental dam • Risk is increased if the person has poor dental hygiene or cuts and sores in the

mouth • Avoid performing oral sex on a woman during menstruation • Avoid semen in the mouth.

Other Sexual Practices

• Rimming (licking the anus) is associated with the transmission of hepatitis A • Sex toys, like a dildo or vibrator, should not be shared – or if shared should have a

new condom put on them between each partner • Risk is increased with any sexual activity that causes bleeding or genital trauma.

Post-Exposure Prophylaxis after Sexual Exposure (PEPSE) Individuals can be offered treatment to reduce the likelihood of infection with either HIV or hepatitis B following sexual exposure (PEPSE). There is no PEPSE available for hepatitis C – see NHS Lothian Referral Guidelines, RefHelp. NEGOTIATING SAFER SEX Practising safer sex involves more than just getting a supply of condoms. It is just as important to be able to negotiate safer sexual practices (e.g. the use of a condom) with a sexual partner/s. Safer Sex Negotiation Skills include:

• Being aware of one’s own sexual health needs and the risk of sexually transmitted infections

• Having the confidence to raise the subject with a sexual partner • Negotiating which sexual activities are desirable or acceptable • Agreeing with a sexual partner about protection and contraception methods

beforehand • Being able to say ‘no’ if safer sex is not possible • Being able to deal with any form of coercion to practice unsafe sex • Knowing how to deal with any problems that might occur, e.g. burst condoms • The ability to predict risky situations and to stop them happening.

Unsafe sexual practices are often associated with drug and alcohol use. People are more likely to engage in unprotected sex whilst intoxicated or under the influence of drink/drugs. Some drugs reduce levels of anxiety and fear, some affect judgement, reaction times and emotions, levels of consciousness and decision-making ability. It is therefore important that people who use substances take time to consider how they might negotiate safer sex. Issues that can create power imbalances between individuals, or that can create expected behaviours can also affect the ability to negotiate. For example:

• Gender inequalities and norms, i.e. men can be expected to sleep with multiple partners, where women can be expected to be passive and ignorant about sex.

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• Sometimes the expectations are that women are responsible for contraception and should not require a male partner to use a condom

• In some cultures women are not allowed to choose their sexual partners or who they marry

• In some religious sectors it is believed contraception should not be used and it is possibly expected of women to have no choice over sexual health protection

• Women can also be more vulnerable to infection through their own or a partner’s injecting drug use due to the difficulty of negotiating safer sex / safer injecting practices especially if the male partner has control of the drug supply

• It can be difficult for those working in the sex industry, especially street workers, to negotiate safer sex – sometimes more money can be made if riskier sex is undertaken

• People with low self-esteem may find it hard • People with learning disabilities or other communication issues can be vulnerable.

These power imbalances or expected roles should be taken into account when providing treatment and care for individuals with, or vulnerable to, BBVs. Travel advice All people travelling abroad should be given the following advice in order to prevent BBV transmission:

• Always practise safer sex, especially if having sex with locals in areas of high seroprevalence, e.g. sub-Saharan Africa, parts of Asia and Eastern Europe

• Always take a good supply of condoms • Get immunised against hepatitis A & B at least six months before travelling.

A useful Health Protection Scotland website that gives travel health information for people travelling abroad from the UK is "Fit for Travel". Note: the biggest risk for travellers is accidents/trauma, e.g. road traffic accidents. In resource-poor countries hospitals and clinics may not have access to single use, sterilised medical equipment, including clean needles and syringes. Blood transfusions may be unsafe in countries with inadequate screening facilities. Think about BBV risk before being treated. Consider taking travel kit for medical emergencies. REDUCING THE RISK OF TRANSMISSION OF BBVs THROUGH INJECTING DRUG USE Discuss BBV prevention with ALL drug users, whether or not they report injecting. Always promote safer injecting practices. Use the patient leaflet (see Appendix G) to initiate a discussion on Injecting Drug use and Blood Borne Viruses. This leaflet is designed to be printed out, photocopied double-sided, and given to the patient. Safer Injecting Practices can reduce the risk of:

• Blood borne viruses (HIV, hepatitis B and C) and hepatitis A • Overdose • Vein damage • Infection from bacteria (e.g. abscesses, cellulitis, septicaemia, endocarditis) • Increasing drug tolerance (dependence).

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Note: • Lending, borrowing and sharing injecting paraphernalia is common practice among

injectors – it is hard to avoid any risk of transmission when injecting with others in the same room

• Sharing is frequently reported with ‘sexual partners’ and ‘friends/acquaintances’ • Most people initiate injecting after hearing injectors talk about injecting, or after they

see someone else inject drugs, it can be commonplace at the start for someone else • to do the injecting for them. It is advised to ask: Have you ever been injected by

others or have you injected others? • Generally hepatitis C and B are more easily transmitted through sharing injecting

paraphernalia than HIV • Commonly injected drugs include: heroin, cocaine, amphetamines (‘speed’), diconal,

cyclizine and steroids (intramuscular). ‘Sharing’ means sharing any of the following:

• Needles • Syringes • The preparation surface • Water for injecting, and the cup/container • Spoons (‘cookers’) • Filters • Acidifiers, e.g. lemon juice, vinegar, Vitamin C, citric acid • Swabs • Tourniquets • Straws (for snorting drugs – most commonly cocaine/amphetamines) • Other utensils, such as knives and lighters • Unsafe disposal and re-sheathing of needles • Methods of dividing doses, i.e. ‘frontloading’ and ‘backloading’. 'Frontloading' and

'backloading' are terms used to describe methods of sharing drug solutions, using the syringe as a measuring device.

‘Breaking the cycle’ of Injecting Drug Use Reducing the prevalence and/or frequency of injecting, and preventing initiation into injecting, are important objectives in preventing the spread of blood borne viruses. Various interventions can be employed to help achieve this. The ‘Break the Cycle’ campaign is the most widely known. For further information, click on the link. Preventing initiation into injecting drug use involves:

• Identifying non-injectors to help them resist adopting injecting as a method of drug ingestion

• Working with current injectors to help them reduce their influence on non-injecting drug users.

Promote alternatives to injecting, i.e. ‘switching’ from injecting to:

• Smoking or ‘chasing’ • Snorting • Swallowing • Rectal or ‘up yer bum’ (see http://www.hiwecanhelp.com/safer-using/how-drugs-are-

taken/rectal.aspx) • Taking oral substitute drugs, e.g. methadone.

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PROMOTING SAFER INJECTING PRACTICES Safer injecting advice can include:

• Discussion about the use of sterile equipment • Where to get supplies of needles, syringes, swabs, spoons, acidifiers, cinbins and

so on and discuss taking enough new equipment for every injection (hit) • How to prepare drugs for injection and what needles to use • Where and how to inject • How to remedy poor injecting technique • How to deal with problems of injecting • Information about cross infection • How to clean injecting equipment if sterile equipment is not available – see leaflet • Referral to Harm Reduction Team and/or local drug agency (see the PCFT Services

list). ‘Cleaning’ injecting equipment – see Appendix G. Other advice for safer injecting

• Do not use lemon juice to dissolve heroin as this may cause fungal infections. Use Vitamin C or citric acid as alternative

• Always use new filters each time. Old filters may have traces of blood on them • Dispose of used paraphernalia (‘works’) in a sharps bin or sealed container (jar or

bottle). Do not re-sheath used needles. OCCUPATIONAL INJURIES Lothian policy can be accessed on the NHS Lothian intranet through this link. Needle-stick and other injuries

• Risk of HIV infection from needle-stick injury is 0.3%. None ever recorded from discarded needles in community

• Medium risk of infection from hepatitis C positive source – reported transmission rates between 3% - 10%

• High risk of infection from hepatitis B carriers – ‘surface antigen positive’ (30%). Human bites from carriers should be regarded as infectious due to the possibility of infection from saliva.

Procedure following injury

• Wash thoroughly with soap and lukewarm water, do not scrub • Gently encourage bleeding • Cover with a waterproof plaster • Thoroughly irrigate exposed mucous membranes and eyes with water • Refer to the policy on the intranet • Consider source patient testing • Report incident to line manager as soon as possible • Contact Occupational Health Service • Follow normal procedures for dealing with contamination – see Lothian Infection

Prevention and Control Manual • For community exposure, expert advice is available from on-call consultants in GUM

or RIDU (via switchboard 0131 536 1000, out of hours RIDU only, on the same number)

• Needle-stick injury: encourage bleeding, wash with water and soap or antiseptic, cover with waterproof plaster, and seek medical advice immediately.

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For occupational exposure through Occupational Health Service (OHS). NHS Lothian staff OHS on 0131 537 9369 or 0131 537 6000 outwith normal hours.

There are two important factors in assessing risk of needle-stick injury:

• The injury – the depth? hollow-bore needle?, gloves worn? • The source – known to be positive? if so, viral load for HIV? high risk group?

In most cases the risk is low, however in all cases:

• Report injury to your manager and follow the Standard Operating Procedure following needle-stick injury (click on the link to access the Procedure).

POST-EXPOSURE PROPHYLAXIS (PEP & PEPSE) Following any suspected exposure to blood borne viruses seek expert advice and assessment for the appropriateness of PEP or PEPSE (post-sexual exposure) – see GUM for HIV, specialist virology department for HBV or HCV or occupational health for NHS occupational exposure; Occupational Health Service (OHS) are contactable on 0131 537 9369 or 0131 537 6000 out with normal hours. Click on the link to access the NHS Lothian PEP Policy. HIV

• Consider after sexual exposure, needle-stick injury, unsafe injecting practice, incidents involving exposure to blood

• No vaccine available • If exposure risk is significant: antiretroviral drugs given as a prophylaxis to prevent

infection – individually tailored by HIV specialist • Ideally, PEP should be commenced as soon as possible after injury (i.e. within 2

hours) but may be considered up to 2 weeks after injury. Hepatitis C

• No vaccine currently available • No specific PEP treatment currently recommended • Follow-up blood tests advised.

Hepatitis B

• Consider after sexual exposure, needle-stick injury, unsafe injecting practices, close household exposure, incidents involving exposure to blood

• If the individual has not had a previous effective course of immunisation, PEP includes HBV Immunoglobulin (HBIG) and an accelerated immunisation course – see immunisation schedules earlier in this section assuming a significant exposure?

• If the individual has had a previous course of immunisation consider a booster dose of hepatitis B vaccine

• Follow-up bloods advised. Hepatitis A

• Consider after close exposure to infected cases • PEP for hepatitis A includes giving HAV Immunoglobulin (IgG) and immunisation

course • Follow-up bloods advised. •

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CLEARANCE FOR HEALTHCARE WORKERS • The General Medical Council (GMC), Nursing and Midwifery Council (NMC) and

General Dental Council (GDC) offer guidance on professional accountability of doctors, nurses and dentists respectively

• Department of Health (2007) published guidance on health clearance for serious communicable diseases (HIV, hepatitis B, hepatitis C and TB). It recommends: pre-appointment/pre-admission health checks for serious communicable diseases for ALL new entrants to the NHS, including healthcare students. This includes checks for TB disease/immunity and hepatitis B immunity (with immunisation if needed), and the offer of testing for hepatitis C and HIV.

• Currently all healthcare workers who are involved in Exposure-Prone Procedures (EPP) must be up-to-date with hepatitis B immunisation and must show an adequate immunity status, or be non-infectious with HBV. They must also be non-infectious with HIV. Click this link to the Health Protection Scotland website for further details.

RISK REDUCTION INFORMATION FOR PEOPLE WHO KNOW THEY ARE INFECTED WITH BBVS, OR ARE AT RISK OF INFECTION

• Check with your GP that you have been tested for all blood borne viruses • Ask your GP whether you have been vaccinated for hepatitis A and B • Check whether other adults in your household have been vaccinated for hepatitis B • Ensure that babies and any children in the household are vaccinated for hepatitis B • Don’t donate blood, semen or breast milk • Don’t carry a donor card • Don’t share toothbrushes, razors and scissors/nail clippers/sex toys • Always clean up spilled blood and bodily fluids carefully – contaminated areas can

be disinfected using ordinary bleach (one in ten dilution) or hot soapy water • Practice safer sex and safer injecting – Appendix F • HIV positive people should continue to use condoms if having sex with another HIV

infected person. Some HIV infected people develop drug resistance to antiretroviral drugs. Safer sex can prevent you being infected with a drug resistant strain of HIV.

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TESTING

SUMMARY

• Promote BBV testing

• EARLY DIAGNOSIS SAVES LIVES

• If testing for any of HIV, HCV, or HBV, consider testing for all three

• Know the components of pre and post test discussion

• Refer patient to alternative sites for testing if you cannot do the test, or if the patient requests referral to another testing site

• Be aware of other sources of support for the individual

• Offer referral to specialist services for assessment and treatment if positive for one or more BBVs. Referral to an agency for practical and psychosocial support is also encouraged – link to Blood Borne Viruses on RefHelp

• Testing is not a one-off event – if individuals continue be at risk then repeat testing is indicated

Offering testing to appropriate patients, and being able to perform, or arrange access to testing, is an important role for all healthcare staff. Healthcare professionals are advised to actively promote BBV testing for those at risk and to consider testing for HIV, HCV, and HBV at the same time. The flowchart on the next page is a guide to the typical stages that may be involved when carrying out a BBV test.

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Testing for Blood Borne Viruses (BBVs)

Why test for BBVs? Advantages Other issues to consider when testing for BBVs

Why test for all major BBVs at the same time?

Who should be offered a test?

Effective communication At risk groups Risk assessment

Medical history Drug and alcohol history (including injecting history) Sexual history

Offering a test

Raising the subject of BBV testing Where to refer / signpost for testing? Understanding the tests

Risk reduction advice Pre-test discussion Arranging to give the result

Taking the sample and asking for

the correct tests

Venepuncture Dried blood spot (DBS)

Which tests to ask for? Sending a sample Arranging for the return of results

Interpreting and giving the result

Interpreting the test results Laboratory services Confirmatory tests

Giving the result Where to do it Post-test discussion

Arranging appropriate follow-up

Where to refer Still at risk? – repeat testing

Selected patient information websites

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WHY TEST FOR BLOOD BORNE VIRUSES? Statistics indicate that there are large numbers of individuals living in Scotland who are chronically infected with one or more BBVs and are not aware of it as recognisable symptoms can take years to develop (see Background and Epidemiology section). Testing allows them to access treatment, be more aware of their health care needs, and consider making lifestyle changes to take care of themselves and reduce the risk of passing a BBV to others. Early diagnosis and access to treatment dramatically improves the effectiveness of treatment for HIV, HBV, and HCV. Why test for all the major BBVs at the same time? People testing positive for one blood borne virus have an elevated risk of being co-infected with other BBVs due to common routes of transmission. Testing for a single virus may lead to missed diagnoses and false reassurance for people who believe they are being tested for all. It is therefore advisable to test for all major BBVs (HIV, HBV, HCV) – especially in target groups. Advantages of BBV testing

• Testing can allay anxiety even if the result is positive • Individuals who are diagnosed with one or more BBVs can access treatment and

care • Early diagnosis and treatment is associated with better outcomes • People receiving treatment are more likely to remain well and live longer than those

not in treatment • Known HIV positive or hepatitis B infected pregnant women can access treatment

and interventions that greatly reduce the risk of vertical (mother-to-child) transmission

• Testing can allow patients to consider changing behaviours which put them at risk of infection or further illness (e.g. not drinking alcohol with hepatitis or using condoms for penetrative sex)

• Diagnosed people can consider taking action that will reduce the risk of them infecting others (e.g. practising safer sex and safer injection techniques)

• A diagnosed person can inform their sexual partners and other at-risk contacts so that they may themselves seek BBV testing

• Women who have been diagnosed can seek testing for their existing children and plan appropriately for any future pregnancies.

Other issues to consider when testing for BBVs In addition to the benefits of testing, it is important to appreciate that there can be negative effects for the individual of being diagnosed with one or more BBVs; it is rare that these outweigh the benefits of knowing about the infection.

• Psychological impact – people who receive a BBV positive diagnosis are likely to experience a whole range of emotions which may include: bereavement, loss of sexual identity, prospect of living with a chronic illness, fear of death, anxiety, depression – see the Living With A BBV section for more details.

• Stigma – there is still a stigma attached to being infected with one or more BBVs.

This stigma can negatively affect people’s mental and physical wellbeing and severely affect their ability to function day to day. It can also lead to discrimination against individuals limiting their choices, opportunities and their ability to access services. For more information about stigma see the Living with a BBV section.

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• Who to tell – some individuals who have been recently diagnosed may be confused about who to tell about their status. It is important for them to reflect carefully on who to tell as they may regret disclosing information in the future. The healthcare professional should encourage people to disclose their status to contacts that may have been exposed to a BBV. In some rare cases the healthcare professional may be required to breach confidentiality if “the benefits to an individual or to society of the disclosure outweigh the public and the patient’s interest in keeping the information confidential” see http://www.aidsmap.com/Confidentiality-and-medical-professional-standards/page/1505552/ #item1505557.

• Work issues – individuals who are chronically infected with HIV or HCV cannot

undertake any job where it is a requirement to perform ‘exposure prone procedures’ – see www.hpa.org.uk for further information. Those infected with HBV may also be excluded depending how much virus they have in their blood. In the majority of cases people have no obligation to tell their employer about their BBV status, however it may be helpful as powerful anti-discriminatory laws are in place to protect employees, see: http://www.aidsmap.com/The-Disability-Discrimination-Act-DA/page/1255094/.

• Financial issues – The Association of British Insurers has agreed not to ask

questions about negative test results so only positive test results need to be declared. Negative test results should not be supplied to insurance companies (beware computer generated medical reports which may contain this information). They have also agreed not to ask ‘lifestyle’ questions about sexual or other behaviour. If these are still included in a questionnaire they should not be answered. Positive tests, wherever they are carried out, require to be declared and will make it more difficult but not impossible to get life policies and mortgages. Remember life assurance issues are not confined to BBVs and should not delay a potentially life saving test!

For more details of financial products for those with HIV see AIDSMAP–Social and Legal Issues for People with HIV: http://www.aidsmap.com/Social-and-legal-issues/cat/1525/.

A history of hepatitis A will not affect access to financial products.

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Effective communication Effective communication is essential when discussing BBVs and related risk factors such as sexual behaviour and drug history. Sexual and/or drug history-taking begins with general issues and progresses to more detailed and specific questioning regarding risk behaviours. Factors that will assist effective communication during sexual and drug history-taking include:

• A comfortable space and adequate time • Privacy and the absence of interruptions • Assurance and explanation of confidentiality • A non-judgemental attitude • Knowledge about alternative lifestyles and a willingness to learn • A willingness to discuss sexual and drug-use behaviour in detail • Listening carefully to the patient • A focus on the goals of the interview • The cultural appropriateness of sexual history-taking may require consideration,

particularly with regard to the gender of the clinician. Adapted from Bradford 2008, French 2007

WHO SHOULD BE OFFERED A TEST? There are differing approaches to identifying who should be offered a test for BBVs. One is identifying ‘at risk’ groups and actively promoting testing among people identified as belonging to those groups. Another method is to do a thorough risk assessment in order to identify risk behaviours. The advantage of using the ‘at risk’ group approach is that it is less time consuming and will identify the majority of individuals at risk. However it may not identify individuals who have high risk behaviours but are not obviously identified as being part of an ‘at risk’ group. The ‘at risk’ groups approach is perhaps the most common approach used in Primary Care in Lothian although in practice there is probably a mixture of both approaches. The list on the next page provides a summary of current guidance on ‘at risk’ groups. Proactively offer BBV testing to:

• Risk related to an environment of high prevalence or incidence: • People from / who have lived in / or travelled to areas of medium to high

seroprevalence of HIV / HCV / HBV – see example in Appendix C • People who have been in prison • People who have had a household contact who is HCV / HBV infected or in a

high risk group

• Risk related to drug or alcohol use including injecting: • Anyone who has ever injected drugs at any time – this may be years ago and you

may have to ask specifically. • Anyone who is, or has been dependent on drugs or alcohol • People who have or are currently snorting or smoking drugs such as cocaine,

particularly if they have shared pipes, straws or other equipment

• Risk related to sexual behaviour: • Anyone who has had unprotected vaginal or anal sex with a sexual partner who

is chronically BBV infected or in a high risk group • Sexual assault victims

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• People with multiple sexual partners (including male and female sex workers) who do not routinely use condoms

• Men who have disclosed unprotected sexual contact with other men • Men who register at a general practice in an area with a large community of men

who have sex with men • Female sexual contacts (unprotected) of men who have sex with men • All those diagnosed with a Sexually Transmitted Infection (STI) • Anyone who reports unprotected anal or vaginal sex with a new partner • Women attending for termination of pregnancy

• Risk related to medical procedures / receipt of blood products / body piercing:

• People who have had unsterile medical or dental treatment – more common in resource-limited countries e.g. outwith Western Europe, North America, Australia and New Zealand

• People who have had procedures such as body piercing, tattooing, electrolysis or acupuncture without appropriate sterile precautions – more common in prison or home

• Historical recipients of blood and blood products in the UK (all blood products checked for HIV since 1985, HCV since 1991 and HBV since the early 70s)

• Anyone planning to donate blood or body tissue • Patients undergoing renal dialysis

• People displaying symptoms that may be associated with HIV, HCV, HBV:

• HIV – chest infections not responding to treatment, TB, shingles, oral candidiasis, severe or chronic diarrhoea, general malaise or weight loss – see Appendix A for a list of Clinical Indicator Diseases for Adult HIV infection.

• HCV and HBV – signs of jaundice, chronic liver disease, unexplained abnormal LFTs especially elevated ALT or AST, and chronic fatigue

• Others:

• Anyone with a BBV unsure about their status regarding other BBVs • All antenatal women (HIV, HBV routinely), and antenatal women at risk (HCV) • Children born to a mother who has a BBV should have paediatric follow-up

currently provided by Dr Laura Jones at the Royal Hospital for Sick Children. Source: BASSH 2008, BHIVA 2008, Lok and McMahon 2009, NICE 2011a, NICE 2011b, SIGN 2013.

RISK ASSESSMENT It is recommended that if patients fall into one of the groups detailed above in ‘Who should be tested?’ that they should be offered a test regardless of detailed risk assessment. However this method could miss people who are not obviously displaying one of the listed risk indicators. Risk assessment can also allow appropriately targeted advice to be given on reducing risk in the future and ensures that patients can be given correct advice on the ‘window period’ and the need for repeat testing if the results come back negative. It is not expected that a full risk assessment would be done at one appointment, rather conducted over several appointments. Referral to a specialist service which can provide dedicated time for a thorough risk assessment may be indicated – such as the Genito-Urinary Medicine clinic, BBV counselling clinic at RIDU, Substance Misuse Directorate BBV team – see the Services section for a list of testing services. Risk assessment would consist of obtaining information about:

• General medical history

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• Drug and alcohol history – including how they use/used drugs i.e. injecting, snorting, smoking etc

• Sexual history • Details about living arrangements.

See Appendix D for more details. Indicators of high risk of BBV transmission:

• Unprotected sex – especially if with multiple partners or new partners, between men, with bisexual men, with an injecting drug user, with anyone from an area of high or intermediate seroprevalence – see a list of areas in Appendix C

• Injecting drug use – especially if sharing needles or syringes, or any other equipment used (filters, water, spoons, tourniquets, swabs, preparation surfaces)

• Received medical care, including receipt of blood products, where hygiene standards may not adequate to prevent BBV transmission. This may be more common in areas outside of North America, Western Europe, and Australia and New Zealand

• People from / who have lived in / or travelled to areas of medium to high seroprevalence of HIV / HCV / HBV – see example in Appendix C.

For a fuller discussion of risk factors see the Transmission section. See Appendix B on risk factors and Appendix D for components of a BBV risk assessment. OFFERING A TEST RAISING THE SUBJECT OF BBV TESTING Most people will attend voluntarily for BBV tests but it is no longer acceptable to wait for patients to request these tests if they are known to be at risk of infection or have clinical indications for testing, such as possible BBV-related illness. In most cases it is entirely appropriate to carry out BBV testing in the primary care setting. Any delay in testing, e.g. referring elsewhere, increases the risk that the person will not attend. Note: Doctors who fail to diagnose a patient who has had clear risk, or signs and symptoms of a BBV could potentially be seen as negligent. See Local AIDS sheet Number 106 available at: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/MedicinesManagement/LocalAIDsSheets/Documents/Forms/AllItems.aspx. However, remember the following:

• Informed consent should be obtained for all BBV tests taken from a patient with the exception of life-threatening emergencies where testing is important for the patient’s own care

• HIV and HBV (but not HCV) testing is offered as part of ‘routine antenatal screening’. Pregnant women are given a brief description of the tests being taken and written information. They can opt out of any or all of the tests

• Blood, blood products and tissue donations are routinely screened and donors are informed of all positive results

• Limited pre-test discussion is recommended for anyone attending voluntarily for a BBV test (see below for details)

• Patients can be given the leaflet ‘Testing for blood borne viruses’. Copies are available from NHS Lothian Library and Resource Centre (Tel. 0131 536 9451) or

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via this link: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/PCFT/Documents/BBV%20Leaflet%20Dec%2010.pdf.

It is possible to develop strategies for raising the issue of BBV testing with patients at appropriate opportunities. Suggested examples of opening phrases include: ‘This is a condition that is sometimes associated with HIV infection and I usually recommend HIV testing in these circumstances – can we discuss whether you could have been at risk?’ ‘When we investigate abnormal liver function tests we usually recommend testing for some viral infections called Hepatitis A, B and Hepatitis C – can we discuss whether you could have been at risk?’ ‘Anyone who has ever injected drugs is possibly at risk of chronic viral infections such as hepatitis B and C and HIV, even if they have not done so for a long time – have you ever thought about having these tests?’ Do you have any concerns about your risk of exposure to hepatitis C, HIV or other sexually transmitted infections?' THE PRE-TEST DISCUSSION The aim is to achieve informed consent for testing. In most cases lengthy counselling is not required. What needs to be covered will depend on the risk assessment and the individual’s own concerns. The most basic discussion should cover the benefits of testing to the individual and details of how the result will be given. Allow the patient to ask questions and be able to answer them. The person can then give informed consent to testing. The pre-test discussion may also include the following if required for that individual:

• Assessment of risk • The ‘window period’ for each test • Person’s understanding of the tests • Person’s understanding about BBV infections • Treatment advances, monitoring & support available • Confidentiality • Person’s ability to cope with the result • Implications to the individual of a positive result • Arrangements for getting the result and support meantime • Risk reduction advice (e.g. safer sex & safer drug use).

Where to refer / signpost for BBV testing in Lothian There are various sites within Lothian where people can access BBV testing. Remember – the best way to get testing done is to offer it and do it on the spot – referring people on to another agency for testing increases the chance that it will not get done. Specialist BBV testing services – see the Services section. Person’s ability to cope with the result

• It is important to discuss how the person will cope with anxiety whilst awaiting results and who can give support during that time

• Is the timing of taking the test right for the individual? Are there other issues that the individual wants to deal with first?

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UNDERSTANDING THE TESTS HIV – Testing in Lothian combines both antibody and antigen tests. A positive test always indicates ongoing infection but does not indicate how long this has been present, or the current state of the immune system. After acquiring the infection, levels of antibodies and antigens can take some time to develop to detectable levels (the window period). In Lothian the routine use of sensitive 4th generation testing has considerably reduced the window period until the detection of antibodies. However any negative test should be repeated at 3 months to pick up any delayed antibody development. HCV – Initial tests are for HCV antibodies only. The window period can be up to 6 months. If antibody positive then an antigen test is required to determine whether there is ongoing active infection. In Lothian this test will be undertaken automatically on any sample with a new positive HCV antibody result. If antigen positive then the individual has active hepatitis C viral infection. If antigen negative the lab will request a follow up sample of >5 mls anticoagulated blood in red EDTA tubes (2x2.7ml most commonly) for a PCR test. If the PCR test is positive then they have active hepatitis C viral infection. If negative they do not and should be offered risk reduction advice. Note: In the case of Dried Blood Spot testing there is no antigen test, only antibody and PCR – if the PCR test is positive then they have active hepatitis C viral infection. HBV – Initial tests for HBV are for antibodies and viral antigens, and can show past or current infection, or past immunisation. The lab will usually interpret results on the result form. The window period can be up to 6 months. Note:

• Further confirmatory blood tests are required for positive results to ensure accuracy of the test and to confirm that the sample was from correct patient. The lab will request these if necessary. Although important these rarely change the initial result

• Tests may need to be repeated if taken during the window period (up to 3 months for HIV, 6 months for HCV/HBV).

Risk reduction Use testing as an opportunity to give advice on reducing the risk of BBV transmission. Infected individuals can pass on infection and can also be re-infected with different strains of HIV or HCV.

• Discuss safer sex practices • Advise on the use of condoms and where to get supplies • Advise patients to avoiding sharing injecting equipment including spoons, filters,

water, acidifiers and needles/syringes • Discuss safer injecting practices and where to obtain sterile supplies of injecting

equipment – see list of Injecting Equipment Provision sites. Use the patient leaflets on Safer Sex and Blood Borne Viruses (Appendix F) and Injecting Drug Use and Blood Borne Viruses (Appendix G) to lead a discussion.

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Arranging to give the result • Results normally take around 7 days to come back (2-3 weeks for dried blood spot

samples) • Ensure that you have system in place to follow up every BBV test taken • Results should be given in person and usually at a pre-arranged appointment • Suggest that the patient may want to bring someone with them.

Taking the sample and asking for the correct tests

• A sample of blood is usually taken from a vein or, less commonly, by obtaining a dried blood spot sample by pricking the finger.

Venepuncture

• If requesting testing for HCV, HBV and HIV, a single form and a single brown tube (7.5ml serum gel) can be used for all the tests.

Dried Blood Spot Testing (DBS) BBV testing can be performed on spots of dried blood. The blood in this case is most commonly obtained from a finger by pricking with a sterile lancet device. The drops of blood are then thoroughly soaked into circles marked on the provided piece of card. At least 3 filled circles of blood are required. This card is put in the designed packaging and sent to laboratory services in Glasgow who will then analyse these samples to provide results for HIV, HBV, and HCV (including PCR if indicated) as requested. Follow up confirmatory venous tests are usually required however this can be done after referral to specialist services. Details on how to order and use DBS packs can be found on: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/UsefulResources/Pages/BloodBorneViruses.aspx. WHICH TESTS TO ASK FOR

• HIV and HCV antibody (serology) tests • HCV antigen testing – in Lothian the lab will run this test on all new HCV antibody

positive tests to see if there is evidence of active chronic infection. From 1st April 2011 this replaces PCR as the initial test performed on venous samples after people are found to be antibody positive (DBS tests will continue to use PCR testing). If this is positive then offer referral to specialist treatment services and consider referral for practical and psychosocial support

• HBV – full clinical details including the reason for testing and any previous HBV immunisation history will allow the lab to determine the correct antibody and antigen tests to run – there are boxes on virology form to indicate which tests you need

• HAV – test for the presence of IgM antibodies if patient is likely to have been exposed to the virus. A total antibody test can tell whether the patient is immune to HAV.

Sending the initial sample and arranging for the return of the results Venepuncture samples should be sent in a sealed bag (provided) containing:

• a 7.5ml brown capped serum gel tube with as much sample that is obtainable • a completed virology form clearly indicating clinical details and which tests are

required

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• clear details of where to report the results including departmental address and phone number

• a ‘high risk’ sticker is still required on the bottle. Dried Blood Spot samples:

• should be sealed in the bag provided • the marked circles on the card need to be thoroughly soaked with blood so that the

blood is visible on the back of the card • should be clearly marked with the requested tests • make sure your full return details are on the form including phone number.

INTERPRETING THE TEST RESULT Hepatitis C

• Initial test is serology for antibodies to hepatitis C • Hepatitis C antibody positive – shows there has been exposure to the virus but not

whether infection is ongoing • In Lothian a positive antibody result will automatically be sent for an HCV antigen

test – a positive antigen test indicates chronic infection with ongoing viral replication. Offer referral to a specialist treatment service and consider referral to other BBV support services for help with practical and psychosocial issues – see Referral to Specialist Care

• If the antigen test is negative the lab will request a follow up sample of >5 mls of anticoagulated blood in red topped EDTA tubes for PCR testing (usually 2 x 2.7mls) If this is positive then offer referral to a specialist treatment service and consider referral to other BBV support services for help with practical and psychosocial issues

• If antibody positive but antigen and PCR is negative – repeat PCR test and if 2 negative PCR results then reassure patient they do not have chronic infection – discuss ways of reducing risk of contracting a BBV. If they continue to be at risk they will require repeat testing for HCV antigen (every 6-12 months)

• Flowchart illustrating the HCV testing process – see Appendix H • For dried blood spot samples there is no antigen test, a PCR test will be

performed if requested and indicates chronic infection if positive. Hepatitis B Serology and surface antigen (viral particle) detection tests are carried out depending on the clinical information entered on the request form – be as full as possible about exposure and HBV immunisation history. Interpretation of the results can be complicated and the laboratory usually provides an interpretation of the tests on the result form. The clinician must be clear about what each test means as it is possible to confuse chronic infection with immunity.

• Hepatitis B surface antigen (HBsAg): A positive result indicates an active infection but does not indicate whether the virus is in the acute or chronic phase

• Hepatitis B surface antibody (anti-HBs): a positive result indicates immunity to hepatitis B from immunisation, or recovery from an infection

• Hepatitis B e-antigen (HBeAg): A positive result is associated with much higher rates of viral replication and enhanced infectivity. A negative result does not indicate the person cannot infect others

• Anti-hepatitis B core antigen (anti-HBc): If it is present with a positive anti-HBs, it usually indicates recovery from an infection and the person is not a carrier. In acute

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infection, the first type of antibody to HBc to appear is an IgM antibody. Testing for this type of antibody can show that a person has recently been infected by HBV (where IgM anti-HBc would be positive) or for some time (where IgM anti-HBc would be negative)

• HBV DNA: A positive (or reactive) result indicates the presence of virus that can be passed to others. A negative result usually means the virus is less likely to be spread to others, especially if tests that can pick up as few as 1,000 viruses (copies) in one ml of blood are used.

Patients with evidence of acute or chronic infection should be offered referral for specialist assessment – see Where to refer for Treatment. Interpretation of Serological Markers

Detection of Status

HbsAg HbeAg Anti-HBc Anti-HBs IgM Anti-HBc

Acute Infection + +/- +/- - +

Chronic Infection (>6 months) + +/- + - -

Past Infection (immune) - - + +/- -

Immunity due to immunisation - - - + -

Contact tracing and immunisation of contacts Hepatitis B is a notifiable disease and the Health Protection Team (HPT) will be informed by the Regional Virus Lab about any acute or chronic Hep B infections. HPT will then determine the partner notification required and will notify the GP or testing clinician.

• For acute hepatitis B infections the HPT will make contact with the patient and determine who requires hepatitis B immunoglobulin, immunisation and testing

• For chronic hepatitis B infections the HPT will notify the GP and request contact tracing and immunisation of household and sexual contacts. A letter is supplied to give to patients to give to contacts that are not registered with the same GP so that they can approach their own GP.

Hepatitis A If the test result is positive (or reactive) and the patient has not been given the HAV vaccine, they have, or have had HAV infection. About 30% of adults over age 40 have antibodies to HAV. If they have been given the immunisation, a positive result means they are immune to HAV and cannot be infected by it. HIV

• HIV test – initial test is an antibody test, in which a positive test indicates chronic infection and the patient should be referred to a specialist service for further testing to determine stage of HIV infection – see Where to refer for treatment

• PCR (viral load) – viral RNA detected to give indication of level of viral replication. It is used to make decisions on when to treat and to monitor treatment

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• CD4 count – immune marker, can be used in General Practice to determine risk of opportunistic infections but is not a diagnostic test as per PCR.

GIVING THE TEST RESULT Where to do it Arrange to give the result in a comfortable and confidential environment. Ensure enough time to give the result face to face and to deal with issues that may arise. Post-test discussion If negative:

• Check if retesting required due to window period – see Understanding the Tests • Discuss how to reduce future risk including safer sex and safer drug use if

appropriate • Offer HBV and HAV immunisation if required • For HCV antibody positive with negative HCV antigen and negative PCR – offer

reassurance but recommend repeat PCR testing asap to confirm resolved infection. If positive (reactive): Note: although a lot of information needs to be discussed when giving a positive result, this can be done over more than one consultation. If you have a positive result it may be possible to phone the relevant treatment centre to pre-arrange an appointment where they will be able to reinforce and expand on initial discussions – see Blood Borne Viruses on RefHelp.

• Tell the patient about their result • Check understanding of the result – for example, a positive HCV antibody test

shows exposure to the virus but does not tell you if people have chronic HCV – a further antigen and possible PCR test is needed for this

• Review pre-test discussion and address concerns of the person. What is their biggest anxiety?

• Reiterate benefits of assessment and treatment – give a positive message • Whom to tell and not to tell? Identify supports in family and friends. Most employers

do not need to be aware of the diagnosis. For health professionals it is very important that Occupational Health are informed and decisions are made about what work can be undertaken

• Take confirmatory tests as requested although this should not delay referral to specialist services – the confirmatory tests can be performed at specialist services post referral – however if the person DNAs they should be done in primary care

• Discuss how to reduce future risk, including HBV and HAV immunisation if required • Discuss implications for family members, sexual partner/s who may require BBV

testing and immunisation • Give information on the nature of infection, routes of transmission and ways in which

risk of transmission can be reduced • Advise that sharing information about infection with sexual partners is important as

not doing so could lead to legal proceedings if there is onward transmission • People with HIV, HBV, HAV should be advised about availability of post-exposure

prophylaxis (PEPSE) following unprotected sexual intercourse or condom split – see the Prevention section

• For HIV, PCR positive HCV and chronic HBV – offer referral to specialist treatment centre and for practical and psychosocial support – see Blood Borne Viruses on RefHelp

• Give details of locally available support or helplines (see the Services section).

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Confirmatory tests Confirmatory BBV tests can be performed at specialist services (post referral) if the person attends. If not they should be taken in Primary Care. What will be requested for confirmation?

• A follow up blood test will be requested for HIV, HBSAg positive result, and also if HCV antigen positive

• If HCV antigen negative and a follow up EDTA blood sample requested for PCR testing then this will also act as the confirmatory sample.

Arranging appropriate follow up Follow up can be provided in one, or all three of, Primary Care, Secondary Care, or in the Third Sector (voluntary agencies), with there being a greater or lesser degree of self management depending on the patient’s health status and ability. See the following sections for details: Primary and Secondary Care Management Living with a Blood Borne Viruses Repeat testing should be offered annually or more frequently if clinical symptoms are suggestive of seroconversion, or ongoing high risk exposure to BBVs. Repeat testing should also be offered to all individuals who have tested BBV negative but where possible exposure has occurred within the window period (3 months for HIV, 6 months for HBV and HCV). Individuals who are at identified at risk of BBV transmission through for example injecting drug use or unprotected sex, should also be offered BBV re-testing on a 6-12 month basis (RCGP, BHIVA, BASHH Management of viral hepatitides). Where to refer for treatment If an individual is diagnosed with an ongoing BBV infection, i.e.

• HIV antibody positive • HBsAg positive (surface antigen) • HCV Ag (antigen) or HCV PCR positive, then a referral to a specialist treatment

centre should be considered in all cases to enable assessment and consideration for treatment

• HIV antibody positive – refer to Genito-Urinary Medicine Department at Chalmers or the Regional Infectious Diseases Unit (RIDU) at the Western General. Cases can be discussed with the on-call consultant – see RefHelp

• HBsAg positive – refer to Centre for Liver and Digestive Disorders – see RefHelp • HCV Ag (antigen) or HCV PCR positive – refer to Centre for Liver and Digestive

Disorders or Regional Infectious Diseases Unit depending on patient choice and geography – see RefHelp. There is an HCV assessment clinic which runs at St John’s hospital in West Lothian – refer to CLDD marking St John’s clinic on the referral

• Co-infection with two or more BBVs refer to RIDU.

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Help to prepare for the treatment process A significant percentage of people who have been diagnosed with a chronic BBV and referred to treatment centres never attend, particularly regarding hepatitis C. It is recommended that, when offering referral for treatment, referral to an agency that can help to engage the individual in the treatment process is also considered. See the Services section for a list of these supporting services. Useful websites for patient information Hepatitis

• British Liver Trust http://www.britishlivertrust.org.uk • Children’s Liver Disease Foundation www.childliverdisease.org • Hepatitis B Foundation UK http://www.hepb.org.uk/ • National Hepatitis C Resource Centre (Mainliners) http://hepccentre.org.uk/

HIV / AIDS

• AVERT – HIV and AIDS Education and Research Trust http://www.avert.org/ • National AIDS Manual (NAM) http://www.aidsmap.com/en/default.asp • Stonewall works with a range of agencies to address the needs of lesbians, gay

men and bisexuals in the wider community http://www.stonewall.org.uk • Terrence Higgins Trust – HIV/AIDS information, safer sex, online booklets and help

line http://www.tht.org.uk/.

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SECTION REFERENCES Bradford, D., Hoy, J. and Matthews, G. (2008) 'HIV, viral hepatitis and STIs: a guide for primary care' Darlinghurst, NSW: Australasian Society for HIV Medicine. Available at: http://www.ashm.org.au/default2.asp?active_page_id=133 British Association of Sexual Health and HIV (2008) 'United Kingdom National Guideline on the Management of the Viral Hepatitides A, B & C. Available at: http://www.bashh.org/guidelines British HIV Association 'Clinical Audit Reports'. Available at: http://www.bhiva.org/NationalAuditReports.aspx British HIV Association, British Association of Sexual Health and HIV, and British Infection Society (2008) 'UK National Guidelines for HIV Testing 2008'. Available at: http://www.bhiva.org/HIVTesting2008.aspx Department of Health (2002) 'Getting Ahead Of The Curve A strategy for combating infectious diseases (including other aspects of health protection)' London. Available at: http://webarchive.nationalarchives.gov.uk/20040104233105/http://doh.gov.uk/cmo/idstrategy/execsum.htm European Association for the Study of the Liver (2009) ‘EASL Clinical Practice Guidelines: Management of chronic hepatitis B’. Journal of Hepatology 50 pp 227–242. Available at: http://www.easl.eu/_clinical-practice-guideline Foundation for Liver Research (2004) 'Hepatitis B: Out of the Shadows'. Available at: http://www.liver-research.org.uk/liver-research-publications/publications-links.html French, P (2007) ‘BASHH 2006 National Guidelines – consultations requiring sexual history-taking’. International Journal of STD & AIDS Vol 18 pp 17-22. Available at: http://www.bashh.org/guidelines Public Health England (2013) 'HIV in the United Kingdom: 2013 Report' London. Available at: http://www.hpa.org.uk/Publications/InfectiousDiseases/HIVAndSTIs/1311HIVintheUk2013report/ Health Protection Scotland (2010) 'HPS Weekly Report Vol 44 No. 2010/43'. Available at: http://www.hps.scot.nhs.uk/ewr/index.aspx Hepatitis B Foundation (2007) Rising Curve, Chronic Hepatitis B infection in the UK. Available at: http://www.hepb.org.uk/ Hutchinson, S.J., Roy, K.M., Wadd, S. et al. (2006) 'Hepatitis C Virus Infection in Scotland: Epidemiological Review and Public Health Challenges'. SMJ 51(2): 8-51. Available at: http://scm.sagepub.com/content/51/2/8.abstract Lok, A.S.F. and McMahon (2009) ‘AASLD Practice Guideline Update – Chronic Hepatitis B: Update 2009’. Hepatology vol 50, No. 3 pp 1 – 35. Available at: http://www.aasld.org/practiceguidelines/Pages/SortablePracticeGuidelinesDate.aspx National Institute for Health and Clinical Excellence (2011a) 'PH 34 Increasing the uptake of HIV testing among men who have sex with men' London. NICE. Available at: http://www.nice.org.uk/guidance/PH34

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National Institute for Health and Clinical Excellence (2011b) 'PH33 Increasing the uptake of HIV testing among black Africans in England' London. NICE: Available at: http://publications.nice.org.uk/increasing-the-uptake-of-hiv-testing-among-black-africans-in-england-ph33 SIGN (2013) 'Management of Hepatitis C – A National Clinical Guideline'. SIGN 133. Available at: http://www.sign.ac.uk/guidelines/fulltext/133/index.html

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MANAGEMENT and CARE of HIV, HEPATITIS B and C

SUMMARY BOX

• All clinical staff in the primary care team should be able to identify those who are at risk of infection and recognise all key signs/symptoms for HIV. HCV and HBV.

• Increased patient identification and testing for BBVs in primary care will lead to earlier diagnosis and better outcomes for patients.

• Any patient diagnosed with one or more BBVs should be offered specialist referral. Primary care should remain involved in the care of these patients providing general medical services.

• Immunisation against hepatitis A and B should be actively promoted among at risk groups.

• If an individual is receiving pharmacotherapy for HIV, HBV, or HCV it is important to understand the advantages of treatment and what the potential adverse and unwanted effects are, and how to respond to them.

• Medications should be recorded in patient records in a way that allows safe prescribing of other medications that may potentially interact with them.

• Primary care staff may be requested to take a role in the monitoring and care of an individual who is also seen in a specialist service or for those who are not engaged with such a service.

SECTION CONTENT AND LINKS Referral to Specialist Care for BBV Infections HIV Infection Specialist HIV Care and Antiretroviral Treatment Hepatitis C Infection Hepatitis B Infection Treatment of Chronic Hepatitis B in Secondary Care Children and BBVs See the Services section for details of support agencies and organisations mentioned in this chapter. PRIMARY CARE HIV infection, chronic HCV and chronic HBV infections are all long term illnesses requiring medical care and treatment over a prolonged period of time. As such they fit into the model of chronic disease management that is familiar to primary care. They may be best managed on a ‘shared care’ model with the primary care team offering support and care in the community whilst specialist treatment is delivered from the hospital setting. Historically patients with HIV have often received the bulk of their care in a hospital-based setting, including much care that would usually be seen as primary care. As numbers of patients increase, largely due to long term survival on treatment, this model is becoming unsustainable and a move to a model of care similar to other chronic diseases would be more appropriate. Patients with HCV infection are often seen in primary care as only 1 in 4 of those diagnosed in Scotland are receiving specialist management each year.

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These patients have a high DNA rate at clinics due to their multiple medical and social problems. Monitoring of those not being seen in specialist care is an important role as disease may be progressing and patients may be becoming more unwell without obvious symptoms. Diagnosis and Testing in Primary Care Everyone in the primary care team should be able to identify those who are at risk and should directly offer or facilitate testing for HIV, HCV and HBV. Advances in treatment mean there are real benefits to individuals of being aware of their BBV status. Early diagnosis and treatment will help to improve long term outcomes for all of the BBV infections – see the Testing section for details on the process of testing. REFERRAL TO SPECIALIST CARE FOR BBV INFECTIONS It is recommended that anyone diagnosed with HIV, active HCV (PCR positive) and acute or chronic HBV is referred for specialist assessment and treatment. There is no reason to delay referral as early treatment is beneficial for all the BBVs. All patients should be offered referral regardless of any issues that may initially affect their ability to take treatment. Acutely unwell patients with HIV-related illnesses or acute hepatitis should be discussed with the on-call doctor for the Regional Infectious Diseases Unit, or the Centre for Liver and Digestive Disorders, with a view to admission. Referral pathways: see RefHelp at: http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view=article&id=689&Itemid=1534

• HIV positive patients should be referred urgently to Sexual Health Services at Chalmers Centre or to the Regional Infectious Diseases Unit (RIDU) at the Western General Hospital

• HCV PCR +ve or Antigen +ve patients can be referred to RIDU or the Centre for Liver and Digestive Disorders (CLDD) at the Royal Infirmary of Edinburgh (RIE). In some areas of Lothian referral can be made to HCV nurse-led outreach clinics which offer assessment and treatment. The decision where to refer would take into account geography, patient, and GP preference. Patients with signs of decompensated cirrhosis should be referred urgently. Symptoms of decompensated liver disease include (but are not limited to) ascites, encephalopathy and gastrointestinal haemorrhage

• Patients with acute or chronic HBV should be referred to RIDU (WGH) or CLDD (RIE). The decision where to refer would take into account geography, patient, and GP preference. People with acute HBV or signs of decompensed cirrhosis should be referred urgently

• Patients with co-infection (HIV/HCV and/or HBV) should be referred to RIDU (WGH).

Specialist referral allows further assessment of patients to determine the stage of their infection and their requirements for treatment. Do not make assumptions about eligibility for treatment at this stage i.e. exclusion of injecting drug users or heavy drinkers. Decisions on appropriateness for treatment can be made after further assessment at the specialist unit. Specialist clinics are often a source of information for patients and relatives, including health promotion and methods of avoiding onward transmission of BBVs.

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Patients with complex social, psychological and physical problems, in addition to their BBV infection, may require additional information and support to enable them to understand their infection and to attend specialist clinics for assessment and treatment. In complex cases a referral to a dedicated support agency at the same time as referral for specialist care will help reduce the risk of non-attendance at the clinic. HIV INFECTION New Diagnosis of HIV Initial assessment in primary care When you see a patient with newly diagnosed HIV infection it is important to get a baseline history, BUT NOT TO DELAY URGENT REFERRAL:

• Route of infection (indicates risk for other infections such as hepatitis B and hepatitis C), also important epidemiologically

• Other past medical history • Other medication • Any illnesses and admissions over the last 2-3 years with conditions that could have

been related to HIV infection? In addition to assessing physical condition, the following areas should be addressed:

• Assess patient’s understanding of the meaning of a positive result and need for information about monitoring, treatment and prognosis

• Assess ongoing risk behaviour and give advice about reducing risk to themselves and others

• Assess social circumstances and social support available • Assess mental health • Consider needs of family members, including children, babies and carers.

Examination should include:

• Weight – as baseline • Check for lymphadenopathy and rashes • Check mouth for oral thrush and oral hairy leukoplakia (see below).

Initial investigations for patients who decline specialist referral

• Repeat HIV test to confirm result • Full blood count and ESR – anaemia and platelet abnormalities can occur due to

HIV • Liver function tests – especially if hep C or B positive • Serology: − hepatitis B, hepatitis C − CMV, toxoplasma − Syphilis

• Lipid studies and ASSIGN score if > 35 years – may underestimate cardiac risk in people with HIV

• CD4 count – measures the level of the CD4 subgroup of T-lymphocytes and indicates damage already done to the immune system. Send 2 x EDTA tubes to HIV Immunology lab at WGH. Lab will supply forms on request. Specimen can be kept overnight at room temperature if required.

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• Viral load – measures the number of viral RNA copies per ml of blood and is a proxy of current disease activity and predictor of future immune damage. Test only following discussion of the case with a specialist. Send 2 x EDTA tubes to Specialist Virology Centre at RIE with normal virology form

• Chest X-ray: as a baseline for future and to exclude past/current tuberculosis.

The most important test for a patient not under regular specialist review is a CD4 count to determine the level of immunodeficiency and

risk of opportunistic infections NEW PATIENT TO PRACTICE - ALREADY DIAGNOSED WITH HIV Initial assessment in primary care When you see a new patient with known HIV infection it is important to get a baseline history of their HIV disease including:

• Time of diagnosis and probable length of infection (may predate diagnosis by some time)

• Current specialist care, last and next appointment • Recent CD4 count – a count taken within the last three months can be used to judge

the persons susceptibility to opportunistic infections • Current antiretroviral medication – medication should be recorded on GP prescribing

system as a hospital prescribed medication to allow interaction alerts to be triggered (for VISION it is suggested that the medication is entered as a repeat medication, prescribing one tablet with the instruction ‘for interactions only’)

• Other medication – e.g. are they on co-trimoxazole for PCP prophylaxis if CD4<200?

• Any HIV-related illnesses and admissions? • Medical history: standard past medical history including drug allergies.

PRIMARY CARE MEDICAL MANAGEMENT OF HIV-RELATED ILLNESS Patients with diagnosed HIV who are under specialist care will often still use primary care for support, management of non-HIV-related conditions, and for diagnosis of signs and symptoms they experience. Primary care clinicians may find it difficult to assess whether a presentation is HIV-related and how to judge its significance. The CD4 count can be a valuable tool to assist in assessment of the patient if a recent (<3 months) result is available. In general a patient with a lower CD4 count is more likely to have an HIV-related condition and to be more seriously unwell – refer early. CD4 Count and Risk of Illness

Cd4 Count Immune deficiency Disease state

300-1000 Minimal/None Risk of opportunistic infections (OI) is low, some tumours are more common (e.g. lymphoma, cervical carcinoma)

200-300 Moderate deficiency Bacterial chest infections, diarrhoeal illness, skin infections, reactivation of TB

<200 Severe deficiency At risk of pneumocystis carinii pneumonia (PCP) and other OI – seek advice and refer early

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HIV-RELATED CONDITIONS Patients in the UK are often diagnosed late in the course of their infection – their CD4 count is below 350, the point at which antiretroviral treatment would be started, or even below 200. Studies have shown that patients have often presented in general medical settings prior to diagnosis with symptoms and illnesses that were related to HIV infection but were not offered testing. THINK HIV AND OFFER TESTING – you are more likely to harm someone by not offering a test than by taking a test with informed consent. You are more likely to see the following conditions in a patient with HIV who has not yet been diagnosed. Pneumocystis Carinii Pneumonia (PCP) This is a respiratory infection with a typically insidious onset. It occurs in patients with a CD4 count of less than 200 and is often the first Opportunistic Infection (OI) acquired in an untreated patient. This means that it can be the presentation of HIV infection in an undiagnosed patient and a high index of suspicion must be maintained for patients at risk. Typical symptoms are:

• Dry cough • Slowly increasing breathlessness over a few weeks • Fevers.

Examination is often unremarkable and the CXR normal or minimal hazy changes. Differential diagnoses include mild chest infections and asthma/COPD. Clues to HIV-related disease may be obtained from clinical history of risk of infection and examination for other signs of immunodeficiency such as oral thrush, oral hairy leukoplakia (see below), seborrhoeic dermatitis, shingles or recent history of these. If there is a suspicion of PCP pneumonia, refer urgently for specialist assessment and diagnosis. Do not treat chest infections empirically with Co-trimoxazole. Skin conditions The skin is a common site for the early manifestations of immune deficiency. These are often common medical conditions but may be more severe, more resistant to treatment or recurrent:

• Fungal infections such as tinea pedis and cruris, nail infections and thrush • Herpetic recrudescences – cold sores, genital herpes and shingles (especially

recurrent or multi-dermatomal) • Seborrhoeic dermatosis – extensive and resistant to treatment • Papular pruritic rashes • Extensive viral warts and molluscum contagiosum (unusual in an adult) • Bacterial infections – impetigo.

If an undiagnosed patient presents with these in conjunction with other signs and symptoms (chest infections, lymphadenpathy), or if the skin conditions seem more severe or recurrent than usual, discuss HIV risk and testing with the patient. Mouth and mucous membranes Opportunistic infections and neoplastic diseases affecting the gastrointestinal and genital tracts are common even in patients with less severe immunodeficiency (CD4 350 and below):

• Oral thrush and, more severely, oesophageal thrush causing heartburn and dysphagia

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• Oral hairy leukoplakia is only seen in patients with HIV. It is seen as white filamentous lesions on the side of the tongue

• Oral herpes – severe and recurrent • Gum and dental problems • Vaginal or penile thrush • Genital herpes or warts • Cervical cancer is more common and HIV positive women should have annual

cervical cytology. Other HIV-related conditions Some other conditions may also be seen as first presentation of HIV disease or in existing patients:

• Kaposi’s sarcoma – a multi-focal skin tumour that typically appears as purplish firm plaque on the skin or mucous membranes but can occur anywhere in the body. Patients require urgent referral for treatment

• Abnormalities on full blood counts – lymphopaenia, thrombocytopaenia and anaemia

• Tuberculosis – reactivation of pulmonary TB can occur at relatively high CD4 counts and extrapulmonary TB in more immunodeficient patients

• Lymphomas are more common in HIV patients and all patients with lymphoma will now be tested for HIV

• Cytomegalovirus infection of the retina affects patients with more severe immunodepression. Initially causing floaters and blurred vision it advances to blindness if untreated

• Neurological symptoms such as headaches, meningism, focal neurological signs, cognitive impairment and seizures may all be caused by HIV-related conditions. These include fungal cryptococcal meningitis, abscesses due to toxoplasmosis and direct HIV infection of the brain. Patients with lower CD4 counts should be investigated more urgently and aggressively if presenting with neurological symptoms.

For a full list see Clinical Indicator Diseases for Adult Infection – see Appendix A. Monitoring and ongoing review for HIV patients not attending specialist care Patients with HIV should be encouraged to attend specialist services regularly for their ongoing review. If they are unable or unwilling to do so, they should be encouraged to attend for review in primary care or that review is undertaken opportunistically. In these cases close links should be maintained with specialist colleagues to inform them and for advice on management. As a minimum, a CD4 count should be undertaken every 3 – 6 months. At consultation patients should have:

• History taken – ask re diarrhoea, rashes, sore mouth, dysphagia, weight loss, sweating, visual disturbance

• Examination – weight, lymphadenopathy, oral thrush and oral hairy leukoplakia • Bloods – CD4, FBC + LFTs, a-fetoprotein if HCV-positive (tumour marker for

hepatoma). Viral load if possible • Annual Lipid studies and ASSIGN score due to increase cardiovascular risk (but

ASSIGN may underestimate risk) • Assess level of support and consider referral to support agencies • Emphasise avoidance of transmission and offer follow-up to contacts

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• Cervical smear annually – increased risk of dysplasia and faster progression in HIV-positive women. SCCRS can now organise annual recall for HIV positive women.

Patients should have a sexual history taken at least annually – see Sexual and Reproductive Health – and, if at risk, be screened for STIs including syphilis, gonorrhoea and chlamydia. Symptomatic treatment

• Consider oral acyclovir for recurrent herpes • Sore mouth – consider oral thrush – treat with fluconazole 50mg daily for

1 week • Pneumocystis carinii pneumonia (PCP) – unlikely to develop unless CD4 <200.

Discuss with GUM / RIDU if suspicious and do not treat empirically. Start Septrin 480mg per day as PCP prophylaxis when CD4 <200

• If CD4 <500 or viral load >60,000 copies per ml, discuss advancing immunosuppression, risk of illness and effectiveness of antiretroviral treatment available through specialist care.

SPECIALIST HIV CARE AND ANTIRETROVIRAL TREATMENT Pharmacological treatment of HIV usually involves the use of a combination of three or four antiretroviral drugs. A table of some of the most common antiretroviral drugs and related adverse and unwanted effects is available at: http://www.aidsmap.com/resources/Antiretroviral-drugs-chart/page/1412453/ CD4 count is the most important indicator of when to start treatment for HIV. It measures the number of CD4 lymphocytes in the blood and is an indicator of the health of the immune system. Current UK guidelines recommend commencing treatment before the CD4 count drops below 350. In general the trend is to start people earlier on treatment especially as successful treatment considerably reduces the risk of onward transmission. Treatment is also used to prevent mother-to-child transmission and in anyone who has had significant HIV-related condition regardless of CD4 count. Viral load is a measure of the amount of HIV in the blood. This test, also known as the PCR test, is a useful measure to detect whether or not treatment is effective. A high viral load (>30,000) means that a large amount of virus is circulating. A low viral load (<1000) means that there is less HIV in the blood, with fewer CD4 cells being destroyed. The immune system will remain healthy for longer if the viral load remains low. Treatment for HIV aims to stop the virus replicating, allowing the immune system to recover and to control the amount of the virus. Treatment aims for an undetectable viral load (<40 copies/ml). A baseline measure is always taken before treatment is started. It is recommended that viral resistance testing is undertaken before starting treatment. Resistance can develop when an individual’s treatment regime is not effective enough to adequately suppress HIV replication. This may be due to an individual missing doses of their treatment.

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Highly active antiretroviral drug therapies Known as Highly Active Antiretroviral Treatment or ‘HAART’ (also sometimes referred to as ART or combination therapy):

• A combination of antiretroviral drugs can significantly reduce HIV viral replication and allow the immune system to recover. Most combinations consist of three or four drugs. There are now over 20 drugs to choose from, so a suitable regime can be found for the majority of patients

• Good adherence is necessary to maintain viral suppression and to avoid drug resistance

• Regular monitoring (Viral load, CD4, and blood tests) are necessary to monitor treatment effectiveness and to detect possible toxicity at an early stage

• Sometimes people have to change drug therapy because they have adverse effects or their HIV has not responded or they have become resistant to initial drug regimes

• HAART is not a ‘cure’ for HIV infection. Even with an ‘undetectable viral load’ there is still HIV present in the body that would replicate if HAART stopped

• HAART is most effective if started when the CD4 is above 350. If started early it is thought that life expectancy for an individual on treatment will be almost normal

• An undetectable viral load does not mean that an individual cannot transmit HIV but it significantly reduces the risk

• Many of the drugs are now available in combination tablets in an attempt to reduce the pill burden and improve adherence.

Currently there are five different types of approved antiretroviral medication. These drugs are all aimed at stopping HIV reproducing. A list of these groups and individual medications is available at http://i-base.info/guides/category/arvs. Drug interactions Drug interactions with antiretroviral drugs can be problematic. Other antiretroviral drugs can affect levels of methadone, other illicit drugs such as amphetamines, and many commonly prescribed drugs. Patients are normally given a ‘drug information sheet’ when they first start new medication. This warns them of drug interactions and advises them to contact the hospital pharmacy or their prescriber for advice if needed.

Add Antiretroviral Medications To Existing Clinical Systems So That Automatic Checks For Interactions Are Activated. On the VISION system the medications can be entered as repeat prescriptions. Prescribe one tablet, in the directions for use write ‘for interactions only’ and authorise for one repeat only.

Some common drugs that can have important interactions with HAART include:

• Statins • Clarithromycin and Erythromycin • Proton Pump Inhibitors • Phenytoin, Carbemazepine • Methadone • Sildenafil and other Ed Drugs • Oral contraceptives • Tricylic antidepressants and St John's Wort.

Do not prescribe these drugs without checking for interactions.

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The University of Liverpool provides a comprehensive HIV drug interactions site at http://www.hiv-druginteractions.org and an app is also available for the i-phone. For further details see the British National Formulary www.bnf.org or http://www.aidsmap.com/Drug-interactions-and-pharmacokinetics/cat/1465/. Information about interactions can also be obtained from the HIV pharmacist at the Western General Hospital (0131 537 1000) or at GUM (0131 536 2079). If you are still uncertain about prescribing any drug to a patient on HAART, check with the HIV pharmacist at GUM or RIDU or the HIV medical team at GUM or RIDU. Adverse and unwanted effects Adverse and unwanted effects can be early, persistent, or long term. Each antiretroviral drug has its own particular profile of unwanted effects. Common unwanted and adverse effects include:

• Diarrhoea • Nausea and vomiting • Skin rash • Dry, skin, nail problems, hair loss, frozen

shoulder • Sexual problems

• Fatigue • Insomnia • Mild mood alteration • Anxiety • Dizziness • Headache

More serious unwanted and adverse effects include:

• Peripheral neuropathy • Lactic acidosis • Pancreatitis • Fatty Liver • Hypersensitivity reaction to Abacavir • Kidney toxicity including kidney stones

• Liver toxicity and rash • Injection site reactions (T-20) • Lipodystrophy • Increased CV risk and heart

disease • Bone mineral changes • Increased bilirubin, jaundice • Severe mood alteration

Source: http://i-base.info/guides/side The patient should be supported through the initial adverse effects (usually done by the specialist antiretroviral prescriber) most of which are short term. Some adverse effects are life-threatening and necessitate stopping the medication immediately. A quick reference guide to managing adverse effects can be found in the MEDFASH publication HIV in Primary care, available at: http://www.medfash.org.uk/uploads/files/p17abjng1g9t9193h1rsl75uuk53.pdf. A useful guide to avoiding and managing unwanted and adverse effects (aimed at patients but useful for staff) is produced by i-base and available at: http://www.i-base.info/guides/side/.

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Metabolic diseases in HIV patients and cardiovascular risk Antiretroviral treatment, especially with protease inhibitors, can have significant effects on lipid and glucose metabolism which are becoming increasingly important. The changes in lipid metabolism were first noticed when patients developed facial wasting and dorsal humps. Increases in cholesterol levels and triglycerides also occur and lead to an increased risk of cardiovascular disease. Patients should be screened for impaired glucose tolerance and diabetes. It is increasingly important, due to longer life expectancy with effective antiviral therapy, that assessment of cardiovascular risk factors, including family history, smoking, exercise, alcohol intake and blood pressure, are undertaken on all patients and appropriate advice and/or treatment is given. Risk factors should be managed appropriately using existing guidelines for primary and secondary prevention but with an awareness of possible drug interactions with HAART. HEPATITIS C INFECTION Most patients are asymptomatic during acute infection but very rarely it can cause an acute hepatitis with jaundice. Screening for hepatitis C is important in patients who present with such symptoms. About 80% of those infected develop a chronic infection which can be asymptomatic, or can cause non-specific ill health such as malaise, myalgia, poor concentration and low mood. LFTs may be within normal range even in people with significant liver disease. Initial screening is with an antibody test (see the Testing section for details). A positive antibody test shows exposure to the virus but not whether infection is ongoing. It is very important to establish whether the patient has had a viral load (PCR) test or a positive ANTIGEN test. The PCR test detects HCV RNA and, if it is positive, shows evidence of active infection. The ANTIGEN test detects a viral protein and, if it is positive, also shows an active infection. All patients with a positive HCV antibody test should have an ANTIGEN or PCR test taken. In most cases this will have been done automatically by the virus lab but if the test was taken some years ago this may not have happened. In Lothian the initial test for ongoing infection is now the ANTIGEN test (see the Testing section):

• Antigen or PCR test positive: this indicates ongoing active infection and these patients should be referred for specialist assessment – see Referral to Specialist Care

• Antigen test negative: requires confirmation with a subsequent PCR test to confirm that there is no evidence of ongoing hepatitis C infection (see Testing section)

• PCR test negative: a negative test suggests that the patient has cleared the virus. They should be given further advice about preventing future infection as HCV antibody positive status does not confer immunity to future re-infection.

Patients who continue to engage in risk-taking behaviour should have repeat PCR testing every 6-12 months.

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Initial assessment and investigations of Antigen or PCR positive patients A baseline assessment of a new patient with hepatitis C should include the following:

• An estimate of how long since infected (may predate diagnosis by some time) although this may be difficult to ascertain

• Route of infection (indicates risk for other infections such as hep B and HIV) and is important epidemiologically

• Current specialist care, if any • Medical history: standard past medical history including drugs and drug allergies.

Past and current illicit drug use is very important • History of testing for HIV, HBV and HAV.

Other investigation in active (Antigen or PCR positive) HCV disease:

• FBC to check for anaemia, neutropaenia • U+E, creatinine, calcium • LFT • Glucose • HIV, HBV and HAV testing should be considered for all patients who have been

tested for HCV (PCR positive or negative). Primary care medical management of HCV Encourage all patients who are Antigen or PCR positive to have a specialist referral. Increasing evidence suggests that early referral for assessment and treatment is beneficial. In some areas of Lothian there are HCV nurse-led outreach clinics which offer information, education, assessment and treatment. At the same time as you refer for HCV specialist care, think about whether there are other medical or social issues that may prevent the patient from starting or completing HCV treatment – aim to help the patient with these from the start. Referral to an HCV support agency such as C-Plus or Waverley Care should be done at the same time as specialist referral.

• Discuss avoidance of further infection risk and prevention of onwards transmission. It is important to document this discussion

• Inform them about the implications for their health of long term infection • Offer immunisation against hepatitis B and hepatitis A if required (see the

Prevention section) • Encourage abstinence from alcohol or at least drinking below maximum

recommended limits. Alcohol causes liver disease progression in HCV infection and reduces response to treatment (SIGN 2013). Offer referral to alcohol support services if required

• Stabilisation of problem drug use, especially if injecting, improves both general health and adherence to treatment. Refer to local drug services for assessment and initial management

• If patients continue to inject, ensure they are aware of how to access clean injecting equipment / IEP service or needle exchange

• Assess for depression and treat / refer for treatment if required. HCV treatment with interferon can exacerbate or precipitate a depressive episode

• Monitor weight and provide help with weight reduction (risk of non-alcoholic fatty liver disease which causes cirrhosis irrespective of any other causes). Provide nutritional advice and support to people who are HCV positive to optimise their diet. Advice can be sought from the community dietitian

• Advise all patients to stop smoking, as smoking can increase progression of HCV – refer to smoking cessation services if necessary

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• Inform patient about support services for people with hepatitis C in Lothian and refer or advise self-referral. People with complex social and psychological needs will benefit from referral to support services at the same time as referral for specialist medical treatment.

Referral and treatment Early referral is advantageous. Chronic HCV does not progress in a linear fashion but accelerates with ageing: many patients with HCV will develop cirrhosis in the long term. Therapy is more effective when administered in the early stages of the disease. The aim of HCV treatment is to eradicate the virus, effectively curing the infection. A negative PCR test for HCV six months after the end of treatment, is taken as proof of viral eradication. This is called a sustained viral response or SVR. The most recent SIGN guidance (2013) advocates assessment for treatment for all patients with HCV, including those with mild to moderate hepatitis on biochemical markers. It recommends that drug and alcohol use, including active injecting, should not exclude individuals from assessment for treatment. Assessment Assessment at the specialist clinic will include blood tests and transient elastography as the initial tests for liver disease in adults newly referred for assessment. Elastography, also known as fibroscanning, is an ultrasound-based technique to determine liver fibrosis. In most cases this has replaced liver biopsy, although liver biopsy may still be required in some younger patients with a normal fibroscan but with biochemical evidence of liver disease and high HCV viral loads. Blood and other tests will include:

• hepatitis B surface antigen (HBsAg)/antibody (anti-HBs) status • IgM antibody to hepatitis B core antigen (anti-HBc lgM) • HIV antibody (anti-HIV) • lgG antibody to hepatitis A virus (anti-HAV) • additional laboratory tests including alanine aminotransferase (ALT) or aspartate

aminotransferase (AST), gamma-glutamyl transferase (GGT), serum albumin, total bilirubin, total globulins, full blood count and prothrombin time

• tests for hepatocellular carcinoma, including hepatic ultrasound and alpha-fetoprotein testing.

The patient will also have an assessment of psychological status, dietary status and general medical health. It is important to advise patients that they will not receive Hepatitis C treatment at their first few appointments but will require an assessment process over a few weeks before starting treatment. A patient leaflet showing this process is available – see Appendix H. Current treatment depends on the genotype of the HCV that the patient is infected with but it is possible to achieve up to a 75% cure rate for all the common genotypes if a patient is treated before they have significant liver disease. Genotype testing is carried out by the specialist unit after referral. There are seven genotypes of HCV of which G1, G2 and G3 are the most common in the UK. In Lothian 45-60% of people will be infected with genotype 1 (G1).

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PHARMACOLOGICAL TREATMENT Non-genotype 1 HCV (all genotypes except G1) Treatment for non-G1 HCV is with a combination of pegylated Interferon alpha given as a weekly injection and oral ribavirin given daily. Treatment usually lasts between 16 and 26 weeks but can be up to 48 weeks. Interferon alpha is a synthetic copy of natural protein produced by the human body in response to infection. It has some direct antiviral effects and stimulates the immune system to fight foreign organisms. Pegylated interferon alpha is a modified version of interferon alpha which has been designed to stay in the body for longer. This allows for the interferon to be taken by injection once a week. Ribavirin is a nucleoside analogue (NRTI) which disrupts viral replication. In treatment trials combination therapy (pegylated interferon and ribavirin) achieved up to an 80% success rate for non-G1 patient without advanced liver disease. These large trials do tend to produce slightly higher levels of treatment response than are achieved in actual clinical practice, and only include patients who have not been previously exposed to treatment. Treatment success is determined by undetectable viral load six months after treatment (Sustained Virological Response - SVR):

• Treatment of genotype, 4, 5, and 6 last for 48 weeks and leads to SVR rates of between 38 to 50%

• Treatment of genotype 2 and 3 lasts for 24 weeks and leads to SVR rates of between 75 to 80%

• Early Virological Response (EVR) is important in deciding if treatment should be continued beyond week 12. If a minimum of a hundredfold drop in viral load is not achieved then treatment is stopped early as further treatment is very unlikely to produce any response.

Genotype 1 (G1) HCV G1 HCV, the most common genotype in Scotland, does not respond so well to standard interferon and ribavirin treatment. Since 2012, new drugs, which are direct acting anti-virals called protease inhibitors, have been available to treat G1 infected patients. The new drugs are used in combination with standard interferon and ribavirin treatment and have increased the cure (sustained viral response) rate in patients without advanced liver disease to 75%. The currently available protease inhibitors (PI) are Telaprevir and Boceprevir. They are taken for 12 - 40 weeks along with IFN/Ribavirin treatment which may last up to 48 weeks. The duration of treatment depends on factors including virological response to treatment, previous treatment failure and stage of liver disease. The PI treatments have greatly improved the success rate of G1 HCV treatment but have added new adverse effects on top of those already caused by IFN/ribavirin. New drugs are on the horizon for treating Hepatitis C that offer the potential of treatment regimes without using interferon, which would greatly reduce side-effects for patients. As of July 2013, none of these drugs is licensed and there are significant concerns about affordability when they do become available, particularly as existing regimes offer high cure rates, albeit with notable adverse effects.

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Unwanted and adverse effects of treatment IFN/Ribavirin Unwanted and adverse effects are common and vary greatly between individuals. Adherence to treatment can be improved by good management of the individuals’ symptoms.

• Flu-like symptoms: Experienced by most patients, they include: fever, rigors, aching joints and muscles and headache. This can be helped by information, paracetamol, increased fluids and rest

• Anaemia is common. Regular testing is important, with treatment as required. Effective treatment can avoid the need for a dose reduction with associated drop in treatment response. Erythropoietin has been found to be helpful in some people

• Depression: Assess mental state before treatment and monitor regularly during treatment. Anti-depressants can be of benefit

• Skin reactions: Dry skin, eczema and pruritis are common and affect about 20% of patients. Manage with emollients, antihistamines, and topical steroids as required. Existing psoriasis may deteriorate. Severe skin reactions are uncommon

• Thyroid dysfunction: Monitor regularly during treatment as about 6% of those receiving treatment become either hyperthyroid or hypothyroid

• Fatigue is commonly reported and is probably related to several things including sleep disturbance, anaemia, depression, nutrition etc. – advise on rest, diet, and sleep hygiene

• Insomnia is commonly reported. Discuss sleep hygiene measures

• Weight loss is common – offer nutritional advice. Referral to a dietitian may be appropriate

• Dyspnoea is rare and may be related to anaemia: dyspnoea in the absence of anaemia requires urgent investigation

• Alopecia is relatively common – hair will grow back after completion of treatment. Source: RCGP 2007

Protease Inhibitors (PIs) In addition to the side-effects of IFN/Ribavirin patients on these medications can suffer from additional adverse effects:

• Telaprevir – rash, itch and peri-anal itch have proved to be problematic side-effects in use

• Boceprevir – anaemia is more common. The PIs also have important drug interactions including with benzodiazepines and methadone which have to be taken into account for both prescribed and non-prescribed medications. A full searchable list of interactions is available at: http://www.hep-druginteractions.org/

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HEPATITIS B INFECTION The incubation period after exposure is 40-160 days. Most children, and up to half of infected adults, have an asymptomatic acute infection. Others may have symptoms including flu-like symptoms followed by jaundice, nausea and fatigue. These usually last about three weeks but can be up to 12 weeks. Fulminant life-threatening hepatitis occurs in 1% of cases and chronic infection (lasting more than six months) occurs in 5-10% of adults. Chronic infection is more likely in immuno-compromised patients, after vertical transmission and in children when it occurs in up to 90% of cases. Acutely ill patients with jaundice and other symptoms should be discussed with on-call physician at RIDU or CLDD with a view to an urgent appointment or admission. Initial assessment and investigations Testing for hepatitis B is based on a series of antibody and antigen detection tests. It is very important to clearly state clinical history, including possible time of exposure to infection, and immunisation history on the test request form. Interpretation of the results is complicated and the laboratory usually provides an interpretation of the tests on the result form. The clinician must be clear about what each test means as it is possible to confuse chronic infection with immunity (also see Testing section). The initial test for ongoing hepatitis B infection is for hepatitis B surface antigen (HBsAg) – this is a viral protein detected in the blood stream. Chronic hepatitis B describes a spectrum of disease usually characterised by the presence of detectable hepatitis B surface antigen (HBsAg) in the blood or serum for longer than six months. In some people, chronic hepatitis B is inactive and does not present significant health problems, but others may progress to liver fibrosis, cirrhosis and hepatocellular carcinoma (HCC). The progression of liver disease is associated with hepatitis B virus (HBV) DNA levels in the blood. Without antiviral treatment, the 5-year cumulative incidence of cirrhosis ranges from 8 to 20%. People with cirrhosis face a significant risk of decompensated liver disease if they remain untreated. Five-year survival rates among people with untreated decompensated cirrhosis can be as low as 15%. Chronic hepatitis B can be divided into e antigen- (HBeAg) positive or HBeAg negative disease based on the presence or absence of e antigen. The presence of HBeAg is typically associated with higher rates of viral replication and therefore increased infectivity. Investigations in primary care The latest NICE guideline on the management of chronic hepatitis B infection recommends that we arrange the following tests in primary care for children, young people and adults who are HBsAg positive:

• hepatitis B-e antigen (HBeAg)/antibody (anti-HBe) status • HBV DNA level • IgM antibody to hepatitis B core antigen (anti-HBc lgM) • hepatitis C virus antibody (anti-HCV) • hepatitis delta virus antibody (anti-HDV) • HIV antibody (anti-HIV) • lgG antibody to hepatitis A virus (anti-HAV)

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• additional laboratory tests, including alanine aminotransferase (ALT) or aspartate aminotransferase (AST), gamma-glutamyl transferase (GGT), serum albumin, total bilirubin, total globulins, full blood count and prothrombin time

• tests for hepatocellular carcinoma, including hepatic ultrasound and alpha-fetoprotein testing.

However, awaiting these tests should not delay referral to the specialist unit (RIDU or CLDD in Lothian), especially if there are signs of decompensated liver disease. (Hepatitis B (chronic) Diagnosis and management of chronic hepatitis B in children, young people and adults, Issued: June 2013; NICE clinical guideline 165: http://publications.nice.org.uk/hepatitis-b-chronic-cg165) Interpretation of Serological Markers

Detection of Status

HbsAg HbeAg Anti-HBc Anti-HBs IgM Anti-HBc

Acute Infection + +/- +/- - +

Chronic Infection (>6 months) + +/- + - -

Past Infection (immune) - - + +/- -

Immunity due to immunisation - - - + -

Primary care medical management of HBV-related illness All patients with evidence of acute or chronic infection should be encouraged to accept referral for specialist assessment at RIDU or CLDD - see Referral to Specialist Care. Treatment with antiviral drugs can suppress viral replication reduce long term liver damage, and in some cases result in viral eradication. All patients with active infection should be advised to avoid unprotected sexual intercourse (vaginal and anal), including oral sex, until they have become non-infectious or their partners have been successfully immunised. Advice on routes of transmission and prevention should be given and this advice documented. Advice about the health implications of long term infection and the implications for their partners and family should be given. Household members should be offered a course of immunisation. Contact tracing The Health Protection Team at Lothian NHS Board is available to offer advice on the management of contacts of cases of acute and chronic viral hepatitis. (Tel: 0131 536 9192). All practitioners have a legal duty to notify all new cases of viral hepatitis to this

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Team – in practice notification is usually done directly by the virus lab. Information is sent from the Team directly to those found positive as well as to their GP. For cases of acute hepatitis B, the Health Protection Team in the Public Health Department will perform the contact tracing as a matter of urgency and liaise with a) acute services to arrange hepatitis B immunisation (and immunoglobulin for those at highest risk where indicated) and b) with primary care to arrange hepatitis B immunisation of other close contacts. For cases of chronic hepatitis B, the Health Protection Team will obtain information on each case and any known contacts before sending a letter to GPs asking them to do the contact tracing, testing and vaccination of contacts within their practice. A letter will be included which GPs can give to the patient to hand to any contacts not registered with the practice. GPs can request assistance with contact tracing from the Health Protection Team. Treatment of chronic hepatitis B in secondary care The goal of treatment for chronic hepatitis B is to prevent cirrhosis, HCC and liver failure. In clinical practice surrogate markers are used to monitor progression of disease and treatment response, and include normalisation of serum alanine aminotransferase (ALT) levels, decrease in inflammation scores with no worsening or improvement in fibrosis on liver biopsies, suppression of serum HBV DNA to undetectable levels, loss of HBeAg and seroconversion to HBe antibody (anti-HBe), and loss of HBsAg and seroconversion to HBs antibody (anti-HBs). Antiviral therapy suppresses HBV replication and decreases hepatic inflammation and fibrosis, thereby reducing the likelihood of serious clinical disease. Since the introduction of effective treatment in the form of interferon alfa, several nucleoside and nucleotide analogues are now approved for use in adults with chronic hepatitis B, together with a pegylated form of interferon alfa. With multiple treatment options that are efficacious and safe, the key questions are which patients need immediate treatment and what sequence and combination of drug regimens should be used, and which patients can be monitored and delay treatment. (Hepatitis B (chronic) Diagnosis and management of chronic hepatitis B in children, young people and adults, Issued: June 2013; NICE clinical guideline 165: http://publications.nice.org.uk/hepatitis-b-chronic-cg165) Assessment of liver disease in secondary specialist care In addition to the blood tests suggested above, prior to referral patients will have transient elastography as the initial test for liver disease in adults newly-referred for assessment. Also known as fibroscanning, this is an ultrasound-based technique to determine liver fibrosis. In most cases this has replaced liver biopsy, although liver biopsy may still be required in some younger patients with a normal fibroscan but with biochemical evidence of liver disease and high HBV viral loads. Anti-viral treatment for hepatitis B The offer of treatment is individually tailored but will generally be offered to people with evidence of inflammation or fibrosis of the liver, especially if they have a high HBV viral load.

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First line treatment in almost all cases will be a 48-week course of peginterferon alfa-2a (see Treatment of hepatitis C for side-effects and contra-indications to this treatment). The new NICE guidance suggests that the direct acting anti-virals entecavir or tenofovir disoproxil are offered as second-line treatment to people with detectable HBV DNA after first-line treatment with peginterferon alfa-2a. They also suggest that tenofovir disoproxil is given to pregnant HBV infected women with HBV DNA greater than 107 IU/ml in the third trimester to reduce the risk of transmission of HBV to the baby. This is in addition to immunisation of these babies after birth - see the Prevention section. Unwanted and adverse effects of hepatitis B treatment The unwanted and adverse effects of interferon treatment are the same as those under the hepatitis C treatment section. There are separate effects related to the use of antiretrovirals Entecavir and Tenofovir, as well as important drug interactions which can be seen at http://www.hep-druginteractions.org/interactions.aspx:

• Tenfovir – Kidney damage is now regarded as a rare side-effect of tenofovir; anyone on tenofovir who begins to experience symptoms of extreme thirst, frequent urination, confusion, or muscular weakness should report these symptoms to their doctor immediately.

Other side-effects include nausea, vomiting, diarrhoea and flatulence, dizziness, and a decrease in the amount of phosphate in the blood.

• Entecavir – The most common side-effects of Entecavir include headache, tiredness, dizziness, and nausea. More serious side-effects include lactic acidosis and liver damage.

Management of the End Stage Liver Disease (ESLD) in Hepatitis C and B Treatment is multidisciplinary and may require the involvement of a palliative care specialist – see the Palliative Care section. Management of the patient at home will usually involve the GP and community nurses:

• Malnutrition is common in ESDL and can contribute to fatigue, wasting and weakness. Dietary interventions can be effective, aiming for an increased intake of calories and proteins. Protein supplements may be used and frequent snacks may be encouraged. An assessment by a dietitian should be considered.

• Ascites or fluid retention is also common and impacts on the mobility and comfort. A low salt diet can be helpful: assessment by a dietitian should be considered. Diuretics can also help. Surgical procedures such as paracentesis or inserting a shunt may be considered

• Chronic encephalopathy can improve with protein restriction – consult a dietitian. The laxative lactulose can also be helpful. Long-term prophylaxis with norfloxacin can improve or prevent spontaneous bacterial peritonitis, as well as improve encephalopathy and reduce the risk of gastric bleeding

• Liver transplant is considered in cases of liver failure or hepatocellular cancer where the cancer is still operable. Source: ASHM (2006), Larson and Curtis (2006)

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Mental health Depression is common in all patients with a chronic illness but particularly with BBV infections. HIV and hepatitis C can also result in organic brain disease which can present with symptoms such as memory problems and depression. Hepatitis C treatment with interferon can aggravate or precipitate depression, as can some HIV treatments. Screening for depression is important. Treatment options may be affected by interactions with medications used to treat HIV or hepatitis C. Support services and psychological treatments are available at the specialist clinics for infected individuals. The Community HIV Team works specifically with HIV positive individuals who have mental health problems. Voluntary organisations can also offer support and counselling to people with blood borne viruses. See guidelines on pre-treatment mental health assessment HCV. Children and BBVs

• HIV • In Lothian, children diagnosed with HIV are treated by a specialist Consultant

Paediatrician at the Royal Hospital for Sick Children. See Services for details. • Most children are infected through vertical transmission from their mother during

pregnancy or at birth. With the advent of antenatal screening for HIV and hepatitis B in the UK and treatment to prevent vertical transmission the rate of new infections is extremely low. Children born to HIV and HBV infected mothers will be closely followed under specialist care up to determine their status.

• Children arriving from abroad, especially from the high risk areas of Africa, Asia and Eastern Europe, may not have been detected antenatally if the mother’s HIV or HBV status is not known. Referral to the RHSC for testing is recommended. See the Services section.

• HCV

• Vertical transmission of HCV is rare and children are not commonly infected. There is no routine ante-natal testing for hepatitis C but targeted testing of risk groups may be undertaken by the midwives; this is not yet universally applied. All children born to a mother known to be PCR positive are followed up by a specialist from the RHSC – see the Services and Pregnancy sections.

• HBV

• Most paediatric infection is through vertical transmission which is endemic in certain areas of the world such as South East Asia. Transmission from mother-to-child usually results in chronic infection which can cause severe liver damage in later life. In the UK, antenatal screening for HBV should detect all pregnant mothers who are carriers. This allows treatment of the newborn with passive and active immunisation which effectively prevents infection.

• Children who are household contacts of an HBV carrier should be tested for HBV and offered an accelerated immunisation course. This should be started immediately and can be stopped if they are found to be immune due to previous infection or if they are found to be currently infected. Any infected child should be referred to the RHSC. (links to referral pathway).

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Complementary therapies A wide range of ‘alternative’ therapies and treatment approaches are available. For example, aromatherapy, massage, reflexology, acupuncture, herbal remedies, homeopathy, shiatsu. Some are available on the NHS, some from HIV and BBV voluntary services and many are provided privately. There is a lack of supportive evidence from good quality studies; however, some people find complementary therapies helpful for general relaxation and wellbeing. Therapies aim to ‘complement’ conventional medical treatment. It is important that treatment providers know if their clients are using complementary therapies and that clients let their doctor know if they are using complementary therapies as there can be important interactions with any pharmacological therapy. Immunisation - also see the Prevention section

• Immunisation against hepatitis A and B should be actively promoted among at-risk groups

• All patients with HIV or HCV should be immunised against hepatitis B and annually against influenza

• All patients with HBV or HCV should be immunised against hepatitis A – consider also for patients with HIV

• For HIV positive patients also consider immunisation against Pneumococcus. Advanced care directives For details on advanced care directives and the Incapacity Act Scotland 1990 see the Palliative Care section. Death certificates It is important to record the actual cause of death on the death certificate. This may cause some concerns about confidentiality – however, if the cause of death is not accurately recorded there is a risk of underestimating BBVs as a public health concern, and contributing to the stigma already attached to BBVs. The General Medical Council advises that death certificates must be completed ‘honestly and fully’. See: http://www.gmc-uk.org/guidance/current/library/confidentiality_faq.asp#q18 Note: the death certificate is a public document and not confidential. However it is possible to provide confidential information by choosing the option on the death certificate to state that more information will be available later. Correspondence with the General Register Office for Scotland is totally confidential and it is possible therefore to amend a death certificate in a confidential manner. The major concern with this method is the possibility of fraud on insurance companies who rely on death certification to settle claims.

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BBVs and the Law Confidential information is both legally and ethically protected from disclosure. A failure to maintain confidentiality can give rise to a legal or professional body action. However, confidentiality is not absolute and public interest favouring disclosure to third parties may outweigh the duty to the patient. A health care worker cannot refuse to divulge confidential information in court or in response to a court order. It is good practice to advise patients about circumstances in which confidentiality may be breached. If you diagnose a patient as having a serious communicable disease then you should explain to the patient:

• The nature of the disease and its medical, social, and occupational implications • Ways of protecting others from infections • The importance of disclosing infection status to those giving medical care to allow

adequate clinical management. If a patient who has been diagnosed with a BBV is not advised or improperly advised on ways of protecting others, and a sexual partner becomes infected, the healthcare worker is potentially liable even if the other person is not their patient. This also applies to patients who have not been diagnosed with a BBV but in whom the diagnosis should have been made because of clear risk signs and clinical symptoms and signs. It is important to inform the patient of the risk of legal action if they do not disclose their BBV status to sexual partners and there is then onward transmission of the virus. It is not clear whether the consistent use of condoms (without disclosure) could provide a successful defence. Always consult expert advice and your defence union in all individual cases of disclosure of confidential information. HIV Scotland has produced a leaflet for people affected by HIV explaining the latest situation which is available at: http://www.hivscotland.com/policy/policy-document-library/view-document/prosecutions-for-hiv-and-sti-transmission-and-exposure-leaflet/ Occupational / needle-stick injury For details of what to do after an occupational / needle-stick injury – see the Infection Control section. Post exposure prophylaxis (PEP) and post exposure prophylaxis after sexual intercourse (PEPSE) PEP can be given to reduce the likelihood of an individual developing infection after exposure to HIV, HBV or HAV. Effectiveness of these interventions is critically time dependent so act immediately - see the Prevention section for details. PEPSE – individuals can be offered treatment to reduce the likelihood of infection with HIV, hepatitis B, or hepatitis A following sexual exposure (PEPSE). There is no PEPSE available for hepatitis C – see the Sexual and Reproductive Health section for details.

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The following list focuses on conditions more likely to present or be picked up incidentally in a primary care setting.

For a full list of indicators see www. bhiva.org

DERMATOLOGICAL

• Fungal Nail Infection

• Nodular Prurigo • Seborrhoeic Dermatitis

• Adult onset psoriasis or worsening of psoriasis in a person with previously mild disease

• Shingles (in an individual from a risk group or >1 episode or involving >1 dermatome)

ORAL

• Oral or Oesophageal Candida

• Oral Hairy Leucoplakia (Lateral border of tongue)

NEUROLOGICAL

• Unexplained Dementia

• Peripheral Neuropathy

• Unexplained Psychosis

HAEMATOLOGICAL

• Thrombocytopenia • Neutropenia • Lymphopenia

• Mononeucleosis like syndrome in adults (Consider Seroconversion)

• ↑ ESR

OTHER

• Bacterial Pneumonia

• Unexplained Chronic Diarrhoea

• Unexplained Lymphadenopathy

• Any STI • Hep B or C Infection

• Renal Impairment

• Cervical Intraepithelial Neoplasia - Grade 2 or above

• Herpetic Genital Ulceration persisting > 2 weeks

• Constitutional Symptoms, Unexplained Fever, Weight Loss

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Referring and re-referring hepatitis C individuals for specialist care All HCV infected individuals should be offered referral for hepatitis C specialist assessment for treatment and follow-up at either the Royal Infirmary of Edinburgh Liver Unit or Western General Hospital, Infectious Diseases Unit. This includes:

• Newly infected individuals • Those previously infected individuals who are now accepting / actively requesting

referral • All infected individuals with evidence of significant liver dysfunction / cirrhosis/ signs

of hepatoma • Anyone previously treated for HCV who did not achieve viral clearance should be

referred back if no longer in follow-up. They require monitoring and may be eligible for new treatments

• Patients not wanting hepatitis C treatment currently but can benefit from HCV monitoring at the specialist units.

When referring to a specialist centre please use the SCI template for referral and

• Obtain consent at the time for onward referral to support services indicating this on the referral form where requested

• Consider also referring all patients simultaneously to support services for information and support about hepatitis C

• Consider health, social and psychological issues which may need addressing to enable the person to consider hepatitis C treatment.

For patients who have not engaged with hepatitis C treatment services after previous referrals, consider the issues that may have led to failure to engage. It may be better to address these issues (see Management of individuals with co-existing support needs below) before referring back to the hepatitis C treatment services – DNA rates at these clinics typically run at 60%. Remember:

• Referral to support services also qualifies for payment under the BBV LES if this is more appropriate than a direct referral to the specialist service

• All hepatitis C and drug support agencies can directly refer patients for treatment. Treatment clinics may contact you about re-referrals of patients who have previously DNA’d at their service to discuss what other management and support they may need to help them engage with HCV treatment. Management of individuals with co-existing support needs Some individuals may require additional support and management in addition to or before referral to a hepatitis C specialist centre. Discuss additional needs with the patient and refer for appropriate support - See the Hepatitis C Referrals flowchart below. If they are already attending support agencies, consider contacting them to ensure adequate support is available before they start hepatitis C treatment. This includes:

• Those who are unsure about wanting hepatitis C treatment / follow-up: refer to C Plus/ Waverley Care

• Those with significant other physical health issues (including dental) where current management is suboptimal (e.g. epilepsy, skin complaints, pain control, COPD, IHD, diabetes): refer to relevant specialty and if appropriate to BBV Care Management Team/Drug Referral Team/Alcohol Referral Team or generic social work care if outwith Edinburgh

• Those with active/severe mental health problems, including untreated or partially treated depression or severe anxiety, suicidal ideation or active psychosis: refer back to or discuss with mental health services who know the patient. If not known to services, refer to local mental health team or CDPS psychiatrist

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• Those with substance misuse problems (alcohol or drugs) who are not currently stable in treatment: refer to CDPS/ Drug Referral Team / Alcohol support

• Those with significant active personal or social problems (housing, relationships, social, benefits problems): refer to BBV Care Management Team/Drug Referral Team or generic social work care if outwith Edinburgh.

Those not wanting a hospital referral / not attending hospital appointments should be:

• Offered a referral to C-Plus or Waverley Care for hepatitis C support, and • monitored using the Primary Care Protocol until they attend hospital appointments.

This is important in order to assess potential liver cirrhosis and liver cancer.

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Hepatitis C Referrals

Contacts: Substance Misuse Services NHS: 0131 537 8343 Alcohol Problem Service: 0131 537 6557 Drug/Alcohol Referral Team (City of Edinburgh Council): 0131 469 6222 West Lothian Addiction Services (WLDAS): 01506 282 845 Mid & East Lothian Drugs (MELD): 0131 660 3566 BBV Care Management Team (City of Edinburgh Council): 0131 469 6222 Social Care: Midlothian: 0131 271 3900; E Lothian: 08456 03157; W Lothian: 01506 777 777 C-Plus: 0131 478 7929 Waverley Care: 0131 558 1425 C-Plus or Waverley Care will be able to tell you about hepatitis C infection - how it can affect you, what you can do to help yourself and what treatment involves. They can also help you get to clinic appointments and to get other support that you might need.

Hepatitis C infectedpatient agrees to hospital referral

YES NO

Unsure about or refuses hospital referral/or persistent hospital DNA: Primary Care Protocol AND refer to

C-Plus/Waverley Care

Co-existing needs? (addiction, physical, psychiatric, social)

No: Refer to RIE/WGH AND

C-Plus/ Waverley Care

Yes Previous persistent DNA?

Yes: Think, WHY? Refer to C-Plus/ Waverley Care

No: Refer to RIE/WGH AND

C-Plus/ Waverley Care

AND Consider referral for additional support before or along with

referral to RIE/WGH

Mental health problems including

untreated/ partially treated

depression/ anxiety: Refer to

local Mental Health team or

CDPS psychiatrist

Significant physical health

problems (incl dental)

requiring attention: Refer to relevant

specialty/ manage in primary care

Substance Misuse issues/Multiple or Complex needs:

Refer to substance misuse

service and relevant social

care

Social/personal problems: Refer to

BBV Care Management Team (Social Care if outwith

Edinburgh)

Significant liver dysfunction,

cirrhosis or signs suggesting

carcinoma of liver: Refer to RIE AND

BBV Care Management

Team or Social Care if outwith

Edinburgh

When more stable refer to

RIE/WGH

AND CONSIDER

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SOCIAL CARE SUMMARY BOX

• Good quality social care can: • Increase access to treatment • Improve outcomes for those in treatment • Improve outcomes for those not in treatment • Lead to a reduction in risk behaviour and a cut in BBV transmission.

• Social care should be well integrated with health services.

• It is vital that support is provided for carers.

• Patients and their carers can be referred or self-refer for social work support and this will be dependent on level of need.

• Support for various types of social needs is available for people with a BBV, carers or family from statutory and voluntary services.

‘Good’ social care is vital in maintaining and improving an individual’s health and it has been shown to improve access to blood borne virus (BBV) treatment, improve treatment outcomes and improve BBV-related outcomes for those not in treatment (Tran et al, 2013; Joy et al, 2008; Mitchell et al, 2007). Improving an individual’s social circumstances can also lead to a reduction in risk-taking behaviour leading to reduced transmission of BBVs (Latkin et al, 2013; Rhodes and Treloar, 2008). Social care support can be provided by Statutory and Non-Statutory (voluntary) services, private sector services, by families, partners, and friends. Social care should be provided in an integrated model, i.e. a person accessing health services should be able to find it easy to access social care services, and vice versa. The Services section lists organisations, agencies and groups that can provide various types of support. SECTION LINKS FOR SOCIAL CARE Social Work Assessment and Support Carer Assessment and Support Welfare Benefits Advice Housing and Home Support Social Support Counselling Respite Care Children and Young People’s Services Transport Support Further information on social issues for people with HIV and hepatitis C: http://www.aidsmap.com/resources/Social-legal-issues-for-people-with-HIV/page/1497492/ http://www.hepctrust.org.uk/Support/Types+of+Support/The+importance+of+support.htm

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Social Work Assessment and Support In Edinburgh City people diagnosed with HIV and hepatitis C can access advice and assessment for their social needs. Support that can be offered can include housing if poorly housed or homeless, short-term support in the home, counselling and access to services for employment and education. For people leaving the Western General Hospital as an inpatient benefits advice can also be provided. Short-term support can be provided to people living with hepatitis C in overcoming issues that prevent them from accessing treatment. The Regional Infectious Diseases Unit has attached social worker support. For further information: http://www.edinburgh.gov.uk/info/1404/health_and_medical_information/760/hiv_aids_and_hep_c Patients and/or carers may be provided with a comprehensive Community Care Assessment (CCA). The provision of a CCA may be dependent on individual circumstances and level of support required. To refer it is recommended to contact Social Care Direct (see above link for further detail). A CCA can include the following:

• Social circumstances – family, childcare, support networks, local community services

• Housing (appropriateness of accommodation and safety issues)

• Financial assessment (benefits, budgeting, debts etc)

• Legal issues (offending, court cases, need for legal representation, immigration etc)

• Activities of daily living and practical needs (shopping, cooking, dressing, washing, cleaning etc)

• Mobility needs

• Communication needs • Employment, training, education needs

• Spiritual needs • Planning for death and dying • Carers needs

A social worker can carry out a community care assessment to help identify social care needs. If required, the social work department may be able to form a package of care which will help meet these needs. This may involve a range of statutory and non statutory services. In some cases people will be allocated a care manager responsible for coordinating the care provision. The level and availability of assessment and support may vary in Lothian Local Authorities Social Work Departments. We advise contacting your local authority for further information. Carer assessment and support Some Carers require support to:

• Enable them to provide good care for the individual • Reduce the risk of them developing their own physical and mental health problems.

Carers often experience health problems because of a lack of appropriate support, isolation, financial stresses, and lack of information (Carers UK, 2013). Support is available to carers on benefits advice and carer support groups and if carers provide regular and substantial advice they may be entitled to a needs assessment by social work.

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For further information on carer support: http://www.carersuk.org/scotland http://www.edinburgh.gov.uk/info/1352/carers Welfare benefits advice Benefits-related information can be provided by hepatitis and HIV support services that can refer people on to the most suitable service for advice and support. You can also seek advice online or in person from the Citizens Advice Bureaux. For further information see the links below: http://www.waverleycare.org/content/adviceandinformation/116/ http://www.adviceguide.org.uk/scotland/benefits_s.htm Support agencies for patients and carers can also provide help with accessing financial advice. Housing and home support Information and support can be provided by non voluntary agents on housing issues and can act as a support when communicating with housing landlords, housing associations etc. http://www.waverleycare.org/content/adviceandinformation/116/ Support in the home can be given to people with HIV and hepatitis C to allow them to live as independently as possible. This can include help with tasks such as cooking, ironing and cleaning. For further information: http://www.positivehelpedinburgh.co.uk/page-sub.aspx?pageID=12 Edinburgh City Council social work service can provide housing support for vulnerable people with HIV/HCV in Edinburgh. Social Services will carry out an assessment of need in this area and offer support required for your level of need. For further details of Social Services, see the Services section and below: http://www.edinburgh.gov.uk/info/1404/health_and_medical_information/760/hiv_aids_and_hep_c Social support There are agencies throughout Edinburgh that can provide support to individuals with a BBV diagnosis. They can provide peer group support, one-to-one befriending support, help with accessing services and agencies, practical day-to-day help, education, healthy living advice, social activities and more. They can also provide support in accompanying people to appointments for their blood borne viruses. Further information on local support: http://www.waverleycare.org/content/ourservices/108/ http://www.addaction.org.uk/page.asp?section=363&sectionTitle=C+Plus+%2D+Helping+you+live+positively+with+hep+C

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Counselling Many BBV-positive people and their carers benefit from supportive counselling as this offers an opportunity for them to talk about their diagnosis and the effects of the illness on them and their family. Counselling and support are offered by a number of agencies throughout Lothian. See the link below for further information on support: http://www.waverleycare.org/content/counselling/123/ Respite care Residential respite care can be accessed in Lothian for people with HIV and hepatitis C. There may be times when this is beneficial, including decline in physical and mental health, when changing treatments and if care needs at home are high and a carer and diagnosed individual may benefit from a break. In Lothian BBV respite services are provided by Milestone House, St Columba’s and Marie Curie Hospices which can also provide support to carers in the community. Children and young people’s services Children and young people can be the main carer for BBV-positive individuals, usually for relatives and not uncommonly their own parents. There may also be issues around young carers who are BBV-positive after mother-to-child transmission. Individual and group support can be provided to children and young people who have BBV-positive parents or main guardian, or if the young persons are positive themselves. The Edinburgh Young Carers Project provides support to young carers in the Edinburgh area. For further information: http://www.positivehelpedinburgh.co.uk/page-sub.aspx?pageID=11 http://www.waverleycare.org/content/childrenandfamilies/120/ http://www.youngcarers.org.uk/index.php Transportation support Transportation services can be provided to people with a blood borne virus and their families. This is to help in attending hospital appointments, social care appointments and to help with journeys for children to schools, nurseries etc. For further information: http://www.positivehelpedinburgh.co.uk/page-sub.aspx?pageID=10

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SECTION REFERENCES Carers UK (2013) Carers suffering due to lack of support. Available at: http://www.carersuk.org/newsroom-scotland/item/3161-carers-suffering-due-to-lack-of-support-scotland Joy, R. Druyts, E. Brandson, E. Lima, V. Rustad, C. Zhang, W. Wood, E. Montaner, J. Hogg, R. (2008) ‘Impact of Neighbourhood-Level Socio-Economic Status on HIV Disease Progression in a Universal Health Care Setting’. Journal of Acquired Immune Deficiency Syndromes, 47(4), pp 500-505 Latkin, C. German, D. Vlaov, D. Galea, S. (2013) Neighborhoods and HIV: A social ecological approach to prevention and care. The American Psychologist, 68(4), pp 210-224 Mitchell, S. Edwards, L. MacKenzie, S. Knowlton, A. Valverde, E. Arnsten, J. Santibanez, S. Latka, M. Mizuno, Y. (2007) ‘Participant Description of Social Support Within a Multisite Intervention for HIV-Seropositive Injection Drug Users (INSPIRE)’. Journal of Acquired Immune Deficiency Syndrome, 4 Supp 2, pp S55-S63 Rhodes, T. Treloar, C. (2008) The social production of hepatitis C risk among injecting drug users: a qualitative synthesis. Addiction, 103(10), pp 1593-1604 Tran, B. Nguyen, L. Nguyen, N. Hoang, Q. Hwang, J. (2013) Determinants of antiretroviral treatment adherence among HIV/AIDS patients: a multisite study. Global Health Action, 15(6)

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SEXUAL AND REPRODUCTIVE HEALTH

SUMMARY BOX

• HIV, hepatitis B, hepatitis C, and hepatitis A can all be transmitted through sexual contact. • Sexual contact is the most common route of transmission for HIV and

probably for HBV in the UK. • The chance of transmitting hepatitis C through sexual contact is generally

much lower, but the risk increases with certain risk behaviours and co-infection with HIV / other STIs.

• Hepatitis A can be spread through the oral-faecal route during sexual contact.

• People are more likely to access sexual health services which are non-judgemental, anti-discriminatory, confidential, and well publicised.

• Sexual health is a sensitive topic – feeling unable to discuss sexual health is one of the main barriers to accessing advice and treatment. Therefore it is important that staff raise the subject and take a sexual history in order to identify individuals at risk of STI (including blood borne viruses).

• Information and advice about safer sex should be offered to individuals and couples when required.

• Family planning and options around safe conception and effective contraception should be discussed.

• Post exposure prophylaxis after sexual exposure (PEPSE) should be offered to people at significant risk of HIV, hepatitis B and A infection – there is no PEPSE for hepatitis C.

• Staff should refer to specialist services for advice and/or treatment and care when required.

This section aims to provide information to staff so that they can support individuals to acquire and maintain the knowledge, skills, and values necessary for good sexual health and wellbeing. Information is included on: • The sexual transmission of blood borne viruses • Sexual history • Prevention and/or risk reduction • Reproductive health, including conception and pregnancy and contraception • Where to refer.

SECTION CONTENT AND LINKS Definition of sexual and reproductive health BBVs and risk of sexual transmission Discussing sexual health and onward referral Assessment of sexual history Reducing the risk of sexual transmission of BBVs Immunisation PEPSE and contact tracing Advice for BBV positive individuals on maintaining sexual health Legal Issues Reproductive Health and Conception and Pregnancy

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Sexual health is defined by the World Health Organisation (WHO)(2006) as: 'A state of physical, emotional, mental and social wellbeing related to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected and fulfilled.’ Of reproductive health, the WHO says 'Reproductive health implies that people are able to have a responsible, satisfying and safe sex life and that they have the capability to reproduce and the freedom to decide if, when and how often to do so.'

BBVs AND RISK OF SEXUAL TRANSMISSION HIV Sexual contact is the main route of transmission for HIV. HIV can be passed on through unprotected vaginal and anal sex, and there is also a risk from unprotected oral sex. The British Association for Sexual Health and HIV reports that the risk of transmission per exposure from a known positive contact during unprotected sexual intercourse ranges from 0.01-0.38% (i.e. one in 10000 to one in 3800) (insertive vaginal intercourse) to 0.04-3% (receptive anal intercourse) and 0-0.04% for receptive oral sex (Benn et al 2011). HEPATITIS C The risk of sexual transmission of hepatitis C is thought to be extremely low (close to zero) in discordant heterosexual monogamous couples – one partner with hepatitis C, one partner without (Ackerman et al 2000, Kao et al 2000, Vandelli et al 2004). However, the risk can increase with different factors. HEPATITIS B The hepatitis B virus is very infectious through sexual contact. For infections acquired within the UK, sexual transmission is the most common route of infection. HEPATITIS A The hepatitis A virus can be transmitted by the oral-faecal route during sexual contact. The infected individual is most infective in a three week period after which infectivity rapidly reduces to zero. BBV Type An Increased Risk of Sexual Transmission

HIV Is linked with: • The presence of an active untreated sexually transmitted infection (STI)

such as herpes, syphilis, chlamydia or gonorrhoea • Increased number of sexual partners • Anal sex – tearing of the lining of the anus and rectum is more likely

leading to a higher rate of transmission than in vaginal sex • Generally the risk is higher for the receptive partner than the insertive

partner during penetrative intercourse • Viral load – in general the higher the viral load the greater the chance of

transmission. Individuals who have a lower viral load are less likely to pass on the virus. Those on treatment who have an undetectable viral load carry a very low risk of viral transmission through sexual intercourse; current advice is that they should continue to use condoms to protect themselves and their partners.

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Hep C Is during unprotected penetrative sex linked with: • An increasing number of sexual partners • Mucosally traumatic sexual practices. These are practices which may

cause some tearing in the vaginal or anal lining leading to the presence of blood, e.g. anal sex, fisting, the use of sex toys, vigorous and prolonged sex

• Co-infection with HIV • The presence of an untreated STI • Increased duration of relationship • Chaotic drug and alcohol use.

Hep B • Unprotected vaginal or anal sex • Unprotected oral-anal contact (rimming) • The presence of an untreated STI • Increased number of sexual partners • Men who have unprotected sex with men (MSM).

Hep A Is during sexual contact linked with any practice which may increase the likelihood of swallowing particles of contaminated faeces: • Rimming (licking the anus) • Unprotected fisting • Oral sex after anal sex • Fingering (digital-rectal contact) • Handling used condoms or sex toys.

DISCUSSING SEXUAL HEALTH ISSUES AND ONWARD REFERRAL Discussing sexual health issues is often difficult for both patients and healthcare professionals and is one of the main barriers to receiving advice and treatment (Gott et al 2004). Individuals are more likely to discuss their sexual health if they feel as though they are in a supportive, non-judgemental environment. Privacy and the assurance of confidentiality are essential (French 2006). It is recommended that statements of confidentiality and non-discriminatory practice are clearly visible in areas where sexual health services are available – including general practice (Department of Health 2003). Suggested lines to open discussion on sexual health include: • ‘There are certain viruses and infections that can be passed on during sex – can we

discuss your sexual health?’ • ‘What do you know about sexually transmitted infections? – Can we discuss them

further?’ • ‘Do you have any concerns about infections that are passed on during sex?’

These are only examples and many different opening strategies will work in different scenarios. One of the main points to remember is that embarrassment can be infectious – if the professional shows sign of embarrassment then the patient is likely to pick up on this. The NHS Lothian Sexual Health and HIV Strategy is based on a five tiered level of service provision. This system relies on all healthcare staff assessing need and referring to the appropriate service if required. (NHS Lothian, 2011).

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National Institute of Health and Clinical Excellence (2007) guidelines recommend that health professionals working in general practice, genito-urinary medicine, community health services, voluntary and community organisations, and school clinics should identify individuals at high risk of STIs (including blood borne viruses) by taking a sexual history. They also recommend that health professionals have one-to-one structured discussions with individuals at high risk of STIs, or arrange for these discussions to take place with a trained practitioner. This can involve referral to Chalmers Sexual Health Centre or other sexual health services – see the Services section for further details. Primary care management Guidance is also available for the management of sexually transmitted infections in primary care as some GP practices now provide testing. The guidelines offer advice on what tests to do, symptoms summary and when to refer to sexual health services. For the primary care guidance see: www.lothiansexualhealth.scot.nhs.uk/Professionals/Resources/STI/Documents/NHS GP STI Guidance.pdf Sexual health services, with the exception of enhanced services for IUD and Implanon insertion, are part of the basic GP contract so all GP surgeries are required to provide a basic level of screening for STIs including HIV, HCV and HBV. The level of sexual health service available from a GP surgery will vary depending upon resources, available expertise and the availability of practice nurse services, and of course the particular interest of individual doctors. ASSESSMENT OF SEXUAL HISTORY Recommended components of a basic sexual health history can be found on the NHS Lothian referral guidelines website. http://www.refhelp.scot.nhs.uk/index.php?option=com_content&task=view&id=355&Itemid=228 The site recommends that a basic sexual history should include:

• Date of last sexual intercourse • Details of condom use • Casual or regular partner • Partner’s gender • Partner’s nationality • Contraceptive method • Nature of sexual activity • Other partners in the last three months • Sex outside the UK • Previous STIs including hepatitis B, C, and HIV.

There are also guidelines for when and how to refer to GUM services Further advice and information More information on sexual history taking, testing for STIs, when to refer to specialist services and services offered by Chalmers Health Centre can be found on Refhelp. REDUCING THE RISK OF SEXUAL TRANSMISSION OF BBVs Safer sex

• Practising safer sex (using barrier methods) can reduce the risk of blood borne viruses as well as other sexually transmitted infections (STIs) and unintended pregnancy

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• Non barrier methods of contraception can prevent unintended pregnancy but they do not protect against sexually transmitted infections.

Condoms Effective use of either male or female condoms during penetrative sex can dramatically reduce the risk of transmission of most sexually transmitted infections (STIs) including BBVs, and also reduce unintended pregnancy. Consistent use of a condom for each episode of vaginal intercourse in couples where one partner has HIV and one does not, reduces the risk of HIV transmission by 80%. (Weller and Davis, 2002) The use of barrier contraceptives also reduces the risk of super infection (infection with a different strain of BBV). Education on the proper use of condoms is important, as their effectiveness is user-dependent. A clear user-friendly guide to using condoms can be found at: www.condomessentialwear.co.uk. More information on male and female condom use can be found at: http://www.ffprhc.org.uk/ Oral sex

• Oral sex (fellatio and cunnilingus) is safer if using a condom or a dam • Oral sex is usually less risky than anal or vaginal sex • The risk increases if the person has poor dental hygiene, cuts or sores in the mouth,

or if there are cuts or sores on the penis, vagina, or anus • Oral sex on a menstruating woman should be avoided • Oral sex which involves semen in the mouth should be avoided • Rimming (licking the anus) is associated with the transmission of hepatitis A and

hepatitis B. Other sexual practices

• Avoid sharing sex toys such as a dildo or vibrator – if they are, a new condom should be used for each individual.

Free condoms, lubricant, and sexual health advice is provided by Lothian’s C:Card service. There are C:Card outlets throughout Lothian – full details can be found on the website: http://www.ccard.org.uk/ For further information on providing C:Card or free condom provision within primary care contact the Harm Reduction Team, tel. 0131 537 8300. Condoms come in a range of different sizes, shapes, colours, flavours, textures, thicknesses and materials. Condoms should have a Kitemark or CE mark – this indicates they are suitable for all forms of penetrative sex. No specific type of condom is more ‘protective’ than others. Negotiating safer sex Practising safer sex involves more than just getting a supply of condoms. The individual must be able to negotiate safer sexual practices (e.g. the use of a condom) with their sexual partner(s).

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Safer sex negotiation skills include: • Being aware of one’s own sexual health needs and the risk of sexually transmitted

infections • Having the confidence to raise the subject with a sexual partner • Negotiating which sexual behaviours are desirable or acceptable • Agreeing with a sexual partner about protection and contraception methods

beforehand • Being able to say ‘no’ if safer sex is not possible • Being able to deal with any form of coercion to practice unsafe sex • Knowing how to deal with any problems that might occur, e.g. burst condoms.

Negotiating safer sex can be difficult due to cultural norms, expected behaviour, low self- esteem, inexperience, lack of negotiation skills, power imbalance within a relationship, and a range of other factors. There are organisations that can offer advice to different groups of individuals about safer sex, e.g. Waverley Care has produced a condom pack with appropriate information for Black Africans in Lothian, in association with c:card. Healthy Respect is a service for young people and those working with young people, which aims to improve sexual health and relationships. See http://www.healthyrespect.co.uk. There are specific sessions relating to condom use and negotiating safer sex in the SHARE programme (Sexual health & relationships education) People with learning disabilities can find it particularly hard to negotiate and practice safer sex. They can experience multiple barriers to sexual health education, information and services. Many of these barriers arise from the nature of particular learning disabilities in combination with societal barriers and stigma (Fraser and Sim 2008). They have a well documented vulnerability to abuse (Brown, 2004, Elvik et al 1990, Joyce 2003, and McCormack et al 2005), and studies have shown a high prevalence of BBVs in people with learning disabilities (Merrick 2002, Vellinga et al 1999). A liaison nurse service designed to facilitate access to appropriate services for people with learning disabilities is available in Lothian. Details can be found at: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/LearningDisabilities/Pages/LearningDisabilities.aspx For other organisations aimed at specific groups see the Services section. Increased risk-taking is associated with drug and alcohol use. People are more likely to engage in unprotected sex whilst intoxicated or under the influence of drink/drugs (Castilla et al 1999, Celentano et al 2006, Independent Advisory group on Sexual health and HIV 2007, NICE 2007). Some drugs reduce levels of anxiety and fear, some affect judgement, reaction times and emotions, levels of consciousness and decision-making ability. It is therefore important that people who use substances take time to consider how they might negotiate safer sex when intoxicated. IMMUNISATION Individuals can be protected against hepatitis A and B by a course of immunisation. There is no immunisation available to protect individuals against HIV, hepatitis C or most other STIs.

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Immunisation should be offered to individuals who engage in risk behaviours or are HIV or hepatitis C PCR positive, and to sexual or household contacts (including infants and children) of at-risk individuals – see the Prevention section for further details. PEPSE (Post-exposure Prophylaxis Following Sexual Exposure) Individuals can be offered treatment to reduce the likelihood of infection with either HIV or hepatitis B following sexual exposure (PEPSE). There is no PEPSE available for hepatitis C. Post Exposure Prophylaxis is available to reduce the complications of hepatitis A and is used to control outbreaks. PEPSE for HIV PEPSE against HIV is recommended after certain limited high risk exposures to HIV infection through sexual intercourse. These mainly include exposure to a person with known HIV or of unknown status but from a high risk group or area. PEPSE for HIV involves taking antiretroviral drugs for four weeks soon after sexual exposure to HIV. It is believed that there is a short ‘window of opportunity’ between the virus entering the body and detection of the virus in lymph nodes and in the blood. PEPSE is aimed at stopping the replication of the virus and consequent infection with HIV. British Association for Sexual Health and HIV (BASHH) guidelines indicate that PEPSE should only be considered within 72 hours of exposure and it is recommended to administer PEPSE as soon as possible after exposure Source: Benn et al 2011. Individuals can contact their GP or Chalmers Sexual Health Centre directly or go to the walk-in clinic: www.lothiansexualhealth.scot.nhs.uk. If the Sexual Health clinics are closed then contact NHS24 or the Accident and Emergency Department who can provide urgent assistance and consult with Infectious Disease on Call. For advice on PEPSE assessment, contact the department of Genito-Urinary Medicine on 0131 536 1070. NHS Lothian has a policy and procedure on PEP following sexual exposure (PEPSE). Details of the policy and procedure are available on refhelp at: http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view=article&id=892:preventing-hiv-and-hbv-infection-post-exposure-prophylaxis-after-sexual-exposure-pepse&catid=87&Itemid=1435 All HIV positive individuals should be made aware of the policy and procedure. PEPSE for Hepatitis B PEPSE for hepatitis B is aimed at reducing the risk of an individual developing acute and chronic hepatitis B infection (PHLS Hepatitis Subcommittee 1992, Salisbury et al 2006). It takes the form of either a course of immunisation against hepatitis B, or a course of immunisation plus the administration of a dose of immunoglobulin. The window of opportunity for administering hepatitis B PEPSE is up to two weeks. For advice on PEPSE assessment contact 0131 536 1070. See the above paragraph for out-of-hours advice and the RefHelp site for further details: http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view=article&id=892:preventing-hiv-and-hbv-infection-post-exposure-prophylaxis-after-sexual-exposure-pepse&catid=87&Itemid=1435

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PEPSE for Hepatitis A Post exposure prophylaxis for hepatitis A has been shown to be around 70% effective at reducing the severity of symptoms. PEP should be considered for sexual and household contacts of a confirmed case regardless of their age. Hepatitis A vaccination may be given and in addition human normal immunoglobulin (HNiG) may be offered for contacts who are more at risk. This may be dependent on time of exposure and take into consideration factors such as people over 50, chronic liver cirrhosis, pre-existing hepatitis B or C infection (Crowcroft et al 2001, Salisbury et al 2006). Public health would normally interview the identified case and follow up identifying potentially vulnerable contacts. See the Health Protection page for contact details: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/PublicHealth/HealthProtection/Pages/HealthProtection-1.aspx Contact tracing It is important to try to identify and trace sexual (and household where appropriate) contacts of individuals who are identified as positive for HIV or hepatitis B. This allows for testing of individuals who have been at risk, appropriate immunisation against hepatitis A and B and advice on prevention and/or treatment. Hepatitis B is a notifiable disease and Public Health will help with contact tracing. Chalmers Sexual Health Centre can also help with contact tracing and advice on confidentiality and disclosure. ADVICE FOR BBV POSTIVE INDIVIDUALS ON MAINTAINING SEXUAL HEALTH It is very important to provide BBV positive individuals with information on maintaining their own sexual health and the health of other people. Topics for discussion should include:

• The risk of sexual transmission of BBVs • Safer sex • Risk behaviours linked to other routes of transmission, e.g. injecting/snorting drugs,

household transmission • Accessing services • Awareness of PEPSE policy at GUM and RIDU.

BHIVA/BASHH/FFPRHC (Fakoya et al 2007) guidelines recommend that all HIV positive individuals under regular follow up are offered a full sexual health screen on an annual basis. It is also recommended that HIV-positive and hepatitis C-PCR positive individuals are offered hepatitis B immunisation and hepatitis A immunisation where indicated – see the Prevention section for further details. LEGAL ISSUES Healthcare staff should be aware of the important legal issues surrounding BBV transmission.

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There have been a number of criminal convictions for the ‘reckless transmission ‘of HIV. The successful prosecutions are usually based on the issue of non–disclosure of HIV status to sexual partners. Individuals should be made aware of the risk of legal action if they do not disclose their status. It is likely that other BBVs such as hepatitis B would be treated in the same way. Confidentiality is not absolute and there are situations where information may be disclosed to a third party, i.e. in court or in response to a court order, or where disclosure may prevent risk of death or serious harm to another person. It is good practice to inform individuals of circumstances in which confidentiality may be breached. Consult expert advice (Chalmers Sexual Health Centre) and your union in all cases of disclosure of confidential information. If a person who has been diagnosed with a BBV is not advised, or is improperly advised, on ways of protecting others, and a sexual partner becomes infected, the healthcare worker is potentially liable – even if the other person is not their patient. This also applies to patients who have not been diagnosed with a BBV but in whom the diagnosis should have been made because of clear risk and/or clinical signs and symptoms. A patient information leaflet on this subject is available from HIV Scotland. http://www.hivscotland.com/policy/policy-document-library/view-document/prosecutions-for-hiv-and-sti-transmission-and-exposure-leaflet/ REPRODUCTIVE HEALTH Infection with a blood borne virus raises a number of issues to do with an individual’s reproductive health. These issues include:

• Sexual dysfunction • Contraception • Conception • Pregnancy • Treatment and teratogenic drugs.

Sexual dysfunction Men and women with one or more blood borne viruses commonly report sexual problems (Danoff et al 2006, Fakoya et al 2007, Guo et al 2007). These range from the loss of desire, to difficulties in making and maintaining relationships, to specific erectile dysfunctions. The cause may be one of (or a mixture of) physical problems such as neuropathy, blood pressure abnormalities, circulation problems, altered hormone levels, psychological problems potentially linked with the risk of transmission, depression, relationship problems, and the effects of drug therapy. Erectile dysfunction could affect condom use leading to unsafe sexual practices and should be treated. Note that there are interactions between antiretroviral therapy and the pharmacological treatment for erectile dysfunction. Referral to Chalmers Sexual Health Centre or Psychosexual Services may be indicated. Contraception for women For a woman to achieve optimal protection against BBV transmission and lowest risk of pregnancy, she may require to use two methods, i.e. condoms – effective at reducing transmission of BBVs, plus (for example) LARC – more effective at preventing pregnancy. However, it is important to consider the reaction between drugs for the treatment of BBVs and hormonal contraceptives. Useful resources are http://www.hiv-druginteractions.org/ and http://www.fsrh.org/pdfs/UKMEC2009.pdf.

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HIV Most available methods of contraception may be considered for HIV positive women and are safe and effective. However, special considerations need to be made in women currently taking, or about to enter into, pharmacological therapy. Some medications used for treatment, especially some antiretroviral drugs used in the treatment of HIV can reduce the effectiveness of hormonal contraception including COCP, POP and Implants but not DMPA. Condoms are usually recommended in conjunction with any hormonal method. Women on enzyme-inducing antiretrovirals should switch to another form of contraception such as depot DMPA or IUS/IUD. The Cu-IUD is the only recommended method of emergency contraception for HIV positive women on HAART. Contact Chalmers Sexual Health Centre for advice – see Services for contact details. Hepatitis Women with acute viral hepatitis should not use combined hormonal contraception. Those with severe cirrhosis should avoid all hormonal methods and consider a copper (UKMEC guidelines 2009), http://www.fsrh.org/pdfs/UKMEC2009.pdf Men and women undergoing treatment for hepatitis C are asked to use two forms of contraception to prevent pregnancy for the duration of therapy and six months thereafter. There is a risk of damage to the developing fetus from the drugs used. Some of the drugs used may reduce the effectiveness of hormonal contraception. CONCEPTION AND PREGNANCY More women with blood borne viruses are choosing to have children and an increasing number of couples request fertility investigation and assisted conception. Couples where either one or both partners have a BBV require specific management strategies throughout conception and pregnancy. There is a risk of transmission both during conception or pregnancy and a risk of mother-to-child and household transmission later. The following table lists the issues for HIV, HCV, HBV and HAV

BBV Type

Conception Pregnancy

HIV There is a risk of transmission during unprotected sexual intercourse. Strategies which have been used to try to reduce the risk include: • Timed conception • Insemination using donor sperm • Sperm washing.

Where there is an undetectable viral load, the risk of transmission is reduced but not completely eliminated especially if adherence is variable or if there is a co-existing STI.

Couples can be referred to Chalmers Sexual Health Centre or a fertility clinic.

Sperm washing is available in Dundee, but not on the NHS.

There is a risk of mother-to-child transmission of HIV during pregnancy – see the Pregnancy section. The risk can be significantly reduced by ensuring that the mother has effective treatment for her HIV, a Caesarean Section if appropriate, HIV treatment for the baby, and avoiding breastfeeding.

Questions about the long term effects of HIV drugs on the fetus and baby are still largely unknown. Current thinking is that the biggest risk to a baby, born to a mother with HIV, is HIV itself. It is thought that the benefits of pharmacological treatment far outweigh the risks.

So far, careful follow-up of children exposed to HIV drugs during pregnancy has not shown any

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differences compared with non-exposed children (de Reuter et al 2008).

Hep C The risk of transmission during unprotected sexual intercourse is low although it can increase with certain factors as discussed earlier (see above for the risk of sexual transmission).

SIGN guidelines on the management of hepatitis C advise that people infected with HCV should consider using condoms for sexual intercourse after being advised of the low risk of sexual transmission. Men who have sex with men and those with a partner who is HIV positive should be advised to use condoms for sexual intercourse (SIGN 2013).

The risk of mother-to-child transmission of hepatitis C during pregnancy is low – around 5%.

Testing for hepatitis C is not part of the routine antenatal screening programme, however, at-risk mothers should be offered the test- see Pregnancy section.

There are no proven interventions to reduce the risk of transmission. The risk increases when co-infected with HIV, in this case a Caesarean-Section would be considered.

Ribavirin, which is used in the treatment for hepatitis C, is known to cause abnormalities in the fetus (i.e. is teratogenic), and therefore is not used during pregnancy. Individuals wishing to conceive should wait for a period of six months after taking ribavirin.

Hep B If one partner has hepatitis B and the other does not, then the other partner can be protected by undergoing a course of immunisation.

Immunity should be confirmed before any unprotected sex.

In the UK, the incidence of mother-to-child transmission of hepatitis B has been reduced to very low levels by the introduction of routine antenatal testing to identify pregnant women who are HBV carriers.

Immunisation of the infant commencing soon after birth is shown to be 95% effective at preventing mother-to-child transmission – this is important because children infected with hepatitis B have a higher risk of developing chronic infection than adults (around 90% vs 5-10% in adults).

In NHS Lothian, hepatitis B vaccine is now offered to all babies born to problem drug-using parents at birth.

http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/PublicHealth/HealthProtection/Immunisations/Pages/Pre-exposureHepatitisBimmunisationfor.aspx

Hepatitis B is an inactivated vaccine and can safely be given to high risk women during pregnancy.

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Hepatitis B treatment is not recommended during pregnancy – see Pregnancy section.

Hep A There is a risk during sexual contact of the transmission of the virus but this is thought to happen by the oral-faecal route.

A course of immunisation is available for individuals at risk and can be administered during pregnancy if clinically indicated (WHO 2000, Salisbury et al 2006).

Mother-to-child transmission has yet to be confirmed as a route of transmission of HAV. There have been some documented cases but these were thought to occur via the oral-faecal route during delivery (Leikin et al 1996).

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SECTION REFERENCES Ackerman, Z., Ackerman, E., and Paltiel, O. (2000) ‘Intrafamilial Transmission of Hepatitis C virus: a systematic review’. Journal of Viral Hepatology 7(2) pp 93-103 Benn, P. Fisher, M. Kulasegaram, R. (2011) 'UK guideline for the use of post exposure prophylaxis for HIV following sexual exposure'. Available at: http://www.bhiva.org/documents/Guidelines/PEPSE/PEPSE2011.pdf Brown, H. (2004) ‘A Rights-Based Approach to Abuse of Women with Learning Disabilities’. Learning Disability Review 9 (4) pp 41-44 Celentano, D.D., Valleroy, L.A., Sifakis, F., MacKellar, D.A., Hylton, J., Thiede, H., McFarland, W., Shehan, D.A., Stoyanoff, S.R., Lalota, M., Koblin, B.A., Katz, M.H., and Torian, L.V. (2006) ‘Associations Between Substance Use and Sexual Risk Behaviour Among Very Young Men’. Sexually Transmitted Diseases 33(4) pp 265-271 Castilla, J., Barrio, G., Jose Belza, M., and de la Fuente, L. (1999) ‘Drug and alcohol consumption and sexual risk behaviour among young adults: results from a national study’. Drug and Alcohol Dependence 56 pp 47-53 Crowcroft, N.S., Walsh, B., Davidson, K.L., Gungabissoon (2001) ‘Guidelines for the control of hepatitis A virus infection’. Communicable Disease and Public Health 4, pp 213-227 Danoff, A., Khan, O., Wan, D., Hurst, L., Cohen, D., Tenner, C., Bini, E., (2006), ‘Sexual Dysfunction is Highly Prevalent Among men with Chronic Hepatitis C Virus Infection and Negatively Impacts Health-Related Quality of Life’. American Journal of Gastroenterology 101 pp 1245-1243 Department of Health (2003b) 'Information for midwives: hepatitis B testing in pregnancy'. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4007742dGuidance/DH_4007742 De Ruiter, A., Mercey, D., Anderson, J., Chakraborty, R., Clayden, P., Foster, G., Gilling-Smith, C., Hawkins, D., Low-Beer,N., Lyall, H., O’Shea, S., Penn, Z., Short, J., Smith, R., Sonecha, S., Tookey, P., Wood, C., and Taylor, G. (2008) ‘Guidelines for the management of HIV infection in pregnant women 2012’. HIV Medicine 9 pp 452-502. Available at: http://www.bhiva.org/PregnantWomen2012.aspx Elvik, S.L., Berkowitz, C.D., Nicholas, E., Lipman, J.L., and Inkelis, S.H. (1990) ‘Sexual Abuse in the Developmentally Disabled: Dilemmas of Diagnosis’. Child Abuse and Neglect 14 pp 497-502 Fakoya, A., Lamba, H., MacKie, N., Nandwani, R., Brown, A., Bernard, E.J., Gilling-Smith, C., Lacey, C., Sherr, L., Claydon, P., Wallage, S., and Gazzard, B. (2007) 'UK guidelines for the management of sexual and reproductive health (SRH) of people living with HIV infection'. Produced jointly by BHIVA, BASHH, and FFP. Available at: http://www.bhiva.org/cms1191550.aspx Fraser, S. and Sim, J. (2008) 'The sexual health needs of young people with learning disabilities'. Briefing paper. NHS Health Scotland

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French, P ‘BASHH (2006) ‘National Guidelines – Consultations requiring sexual history-taking’. International Journal of STD & AIDS 18 pp 17-22 Gott, M., Galena, W., Hinchcliff, S., and Elford, H. (2004) ‘Opening a can of worms’. Family Practice 21/5 pp 528-536 Independent Advisory Group on Sex and HIV (2007) Sex, Drugs, Alcohol, and Young People. Available at: http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_075591.pdf Joyce, T.A. (2003) ‘An audit of investigations into allegations of abuse involving adults with intellectual disability’. Journal of Intellectual Disability Research 47 (8) Nov pp 606-616 Kao, J.H., Lui, C.J., Chen, P.J., Chen, W., Lai, M.Y., and Chen, D.S. (2000) ‘Low instance of hepatitis C virus transmission between spouses: a prospective study'. Journal of Gastroenterology and Hepatology 15(4) pp 391-395 Leikin, E., Lysikiewicz, A., Garry, D., Nergesh, T. (1996) ‘Intrauterine Transmission of Hepatitis A Virus’. Obstetrics and Gynecology 88/4 (part 2) pp 690-691 McCormack, B., Kavanagh, D., Caffrey, S., and Power, A. (2005) ‘Investigating Sexual Abuse: Findings of a 15-year Longitudinal Study’. Journal of Applied Research in Intellectual Disabilities 18 pp 217-227 Merrick, J., Morad, M. and Porath, E.B. (2002) ‘Prevalence of anti-hepatitis A antibodies, hepatitis B viral markers and anti-hepatitis C antibodies among persons with intellectual disability in institutions in Israel’. Journal of Intellectual and Development Disability 27 (2) pp 85-91 NICE (2007) 'One-to-one interventions to reduce the transmission of sexually transmitted infections (STIs) including HIV, and to reduce the rate of under 18 conceptions, especially among vulnerable and at risk groups'. Available at: http://www.nice.org.uk/phi003 NHS Lothian (2011) 'Sexual Health and HIV Strategy 2011-2016'. Available at: http://intranet.lothian.scot.nhs.uk/NHSLothian/Corporate/A-Z/HealthPromotionService/Pages/SexualHealth.aspx PHLS Hepatitis Subcommittee (1992) ‘Exposure to Hepatitis B virus: guidance on post-exposure prophylaxis’. CDR Review 2/9. Available at: http://www.hpa.org.uk/CDR/archives/CDRreview/1992/cdrr0992.pdf Public Health England (2013) 'Immunisation Against Infectious Disease'. ("The Green Book"). Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_079917 SIGN (2013) 'Management of Hepatitis C: a national clinical guideline'. Available at: http://www.sign.ac.uk/guidelines/fulltext/133/index.html

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Vandelli, C., Renzo, F., Romano, L., Tisminetsky, S., De Palma, M., Stroffolini, T., Ventura, E., and Zanetti, A., (2004), ‘Lack of Evidence of Sexual Transmission of Hepatitis C among Monogamous Couples: Results of a 10-Year Prospective Follow-Up Study’. American Journal of Gastroenterology 99(5) pp 855-859 Vellinga, A., Van Damme, P., and Meheus, A. (1999), ‘Hepatitis B and C in institutions for individuals with intellectual disability’. Journal of Intellectual Disability Research 43 (6) Dec pp 445-453 WHO (2000) Department of Communicable Disease Surveillance and Response 'Hepatitis A'. Available at: http://www.who.int/csr/disease/hepatitis/HepatitisA_whocdscsredc2000_7.pdf WHO (2006) 'Defining sexual health – Report of a technical consultation on sexual health 28-31 January 2002'. Geneva. Available at: http://www.who.int/reproductivehealth/publications/sexual_health/defining_sh/en/index.html

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PREGNANCY (incl Post-Natal Management) SUMMARY BOX

• Pregnancy and BBV transmission • HIV, hepatitis B and hepatitis C can all be passed from mother-to-child

(vertical transmission). Hepatitis A can also be passed mother-to-child but only rarely.

• Reducing mother-to-child (vertical) transmission

• HIV – Interventions to reduce mother-to-child transmission include: • The use of antiretroviral drugs for the mother with the aim of having a

undetectable viral load for the mother at the time of delivery • Careful obstetric management during pregnancy and delivery • Avoidance of breastfeeding • Antiretroviral drugs for the newborn baby (to reduce risk of seroconversion)

• Hepatitis C – Interventions to reduce mother-to-child transmission: • There are no proven interventions to prevent or reduce the risk of vertical

transmission

• Hepatitis B – Interventions to reduce mother-to-child transmission include: • Immunisation of mother before conception or during pregnancy • Immunisation of baby and if appropriate Immunoglobulin

• Hepatitis A – Interventions to reduce mother-to-child transmission: • Immunisation for (at-risk) mother

SECTION CONTENTS AND LINKS HIV and Pregnancy Hepatitis C and Pregnancy Hepatitis B and Pregnancy Co-Infection Social Support KEY MOTHER-TO-CHILD (‘VERTICAL’) TRANSMISSION ROUTES

HIV • During pregnancy (intrauterine) – virus crossing the placenta resulting in infection of the fetus

• During delivery (intrapartum) – neonate infected from contact with blood and cervical secretions during childbirth

• During breastfeeding – infant infected from HIV in mother’s breast milk.

Hepatitis C • During pregnancy (intrauterine) – virus crossing the placenta resulting in infection of the fetus

• During delivery (intrapartum) – neonate infected from contact with blood and cervical secretions during childbirth.

Hepatitis B • During pregnancy (intrauterine) – there may be a small risk of the virus crossing the placenta resulting in infection of the fetus

• During delivery (intrapartum) – transmission occurs mainly during or soon after delivery, through contact of the infant with maternal blood and other bodily fluids.

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Hepatitis A • Transmission occurs very rarely, mainly through oral / faecal route during childbirth.

HIV AND PREGNANCY The risk of vertical transmission is related to maternal health, obstetric factors and infant pre maturity. There is a close correlation between maternal viral load and risk of transmission (the higher the viral load the greater risk of transmission). CD4 counts and clinical disease stage have been shown in some studies to be linked with an increased risk of transmission even when controlling the viral load. Without intervention the baby can be infected and go on to develop significant health issues, with a high risk of death before the age of two years (WHO, 2013). Effectively managing the antenatal and postnatal stages can greatly reduce the risk of transmission and significantly improve health outcomes for mother and baby. SUMMARY GUIDE TO HIV AND PREGNANCY

Vertical transmission risk

• Without intervention, approximately 15%-25% of babies can contract HIV. Without treatment HIV infected children develop chronic disease and about 50% can develop AIDS or die by the age of two years. If appropriate interventions are accepted, the risk of vertical transmission can be reduced to below 1%.

Antenatal screening programme

• Routine screening aims to reduce the number of babies born with HIV and improves the health of infected women and their children. Diagnosis during pregnancy means that women can be offered interventions to reduce the likelihood of mother-to-child (vertical) transmission and appropriate paediatric care for the baby can be arranged. Pregnant women can opt out of the antenatal screening programme but very few do when the benefits of testing are explained to them.

Antiretroviral drug therapy (ART) for mother

• Aims to reduce maternal viral load to ‘undetectable’. All women should have commenced ART by week 24 of pregnancy. Women who become pregnant whilst taking ART that is successfully suppressing viral load will normally continue with their ART throughout pregnancy.

• Women with HIV are at a small increased risk of adverse pregnancy outcomes such as spontaneous abortion, stillbirth and intra-uterine growth restriction (IUGR). An increased risk of pre-term delivery has been reported with combination therapies and this has important implications. All pregnant HIV positive women should be routinely screened for genito-urinary tract infections in the third trimester (De Ruiter et al, 2008).

Mode of delivery

• This is dependent on the viral load. BHIVA (2012) guidance recommends vaginal delivery is recommended for women on ART with an HIV viral load of <50 HIV RNA copies/ml at week 36 (with no obstetric complications) and Caesarean Section if the viral load result at week 36 is 50-399 HIV RNA copies/ml. Caesarean is also recommended for a mother with dual BBV infection. Options for delivery should be discussed with the mother.

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Breastfeeding • This is not recommended as HIV is expressed in breast milk and breastfeeding, therefore it increases the risk of transmission.

Antiretroviral drug therapy (ART) for babies

• Infants are normally given antiretroviral drug therapy (ART) for the first four weeks. Most neonates born to mothers known to have HIV will be exposed to ART in-utero, as well as neonatally. The possible adverse effects of ART to the fetus and developing child continue to be monitored. All women who receive ART in pregnancy are registered with the International Drug Registry and exposed infants are followed up for at least one year. To date, no increased risk of birth defects or growth problems have been documented with ART. However, much less is known about the safety of other anti-HIV drugs. All babies who have been exposed to ART are reported to the British Paediatric Surveillance Unit.

Management of HIV positive pregnant women in Lothian

• The care offered to HIV positive pregnant women in Lothian is jointly managed by specialists from midwifery, obstetrics, HIV, paediatrics, primary care and other services (e.g. social work, drug and HIV services). Healthcare staff should refer to the agreed management protocol and care pathway. The approach to treatment is individualised according to the needs of the mother. Good liaison is required between all professionals to ensure that the pregnancy and birth plan proceed appropriately and that the views and wishes of the woman are respected.

• A paediatrician at RHSC undertakes diagnosis of HIV infection in infants born to HIV positive mothers – see the Services section. Babies are tested at birth, six weeks, three months and sometimes four months to look for the HIV virus. If all of these are negative, a HIV antibody test will be done at 18 months to confirm that this is negative.

For further information and guidance on recommended interventions, see British HIV Association (BHIVA) and Children’s HIV Association ‘Guidelines for the management of HIV infection in pregnant women’ (2012): http://www.bhiva.org/documents/Guidelines/Pregnancy/2012/hiv1030_6.pdf HEPATITIS C (HCV) AND PREGNANCY Hepatitis C is a viral infection, which affects the liver and can be passed from mother-to-child, either during pregnancy or childbirth, although the transmission rate is low (around 5%) People who are chronically infected with hepatitis C can remain well for many years and may not know they are infected. Babies who are infected are at risk of developing serious liver disease later in life.

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SUMMARY GUIDE TO HCV AND PREGNANCY

Vertical transmission risk

The transmission rate is thought to be around 5% (BASHH, 2008).

Antenatal screening

Antenatal testing is not routine but can be useful because infected babies can be identified, they can be immunised against hepatitis B and their paediatric care can be managed appropriately. Testing at-risk pregnant women for hepatitis C infection can be useful for a number of reasons:

• The woman’s health can be monitored • The diagnosis is being made at a time when she is likely to be

in contact with healthcare staff and motivated to engage with support services

• She can be given healthy lifestyle advice • She can be given advice to prevent further risk of exposure • She can be immunised against hepatitis B and hepatitis A • She can be given information on infection control in the home

and elsewhere • She can be referred for specialist hepatitis C treatment and

care once the baby is delivered.

Mode of delivery

The risk of the baby acquiring HCV does not increase by the mode of delivery (SIGN, 2013). Caesarean is also recommended for a mother with dual BBV infection. Mode of delivery should be discussed with the obstetrician and midwife as part of the birthing plan.

Breastfeeding Breastfeeding is advised as there is not sufficient evidence to prove the risk of transmission via breast milk (Health Protection Agency, 2013; World Health Organisation, 2013). If there are any concerns they should be discussed with the paediatrician. Breastfeeding guidance to be followed as per the Infant Feeding Policy, NHS Lothian (2013).

Immunisation and treatment

There are no proven interventions to reduce the risk of vertical transmission (except in the case of co-infection) and there is no vaccine currently available. Combination therapy for hepatitis C (interferon alpha & ribavirin) is contraindicated during pregnancy and breastfeeding (because of fetotoxic and teratogenic effects) and in young babies and children.

Management of HCV positive pregnant women in Lothian

Pregnant women found to be infected with HCV (PCR positive) are referred for specialist care. A paediatrician at the RHSC is part of the European Paediatric Hepatitis C Network and will see all infants born to mothers with HCV. The paediatrician will test and monitor infants for signs and symptoms of hepatitis C during the first year of life.

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HEPATITIS B (HBV) AND PREGNANCY Hepatitis B is a viral infection which affects the liver and is highly infectious. Acute infection may be asymptomatic or may cause a non-specific illness with nausea, vomiting, loss of appetite and jaundice. Infection without apparent illness is common in children. Most persons who are infected as adults recover fully and develop lifelong immunity. However, approximately 5%-10% remain infected (chronic ‘carriers’) and potentially infectious. People who are chronically infected with hepatitis B can remain well for many years and may not know they are infected. Children infected before the age of six have between a 30% and 50% chance of becoming a chronic carrier and this is particularly the case for babies infected at birth (80%-90%). Adults infected during childhood have a 15%-25% chance of developing cirrhosis or liver cancer. (World Health Organisation, 2013) SUMMARY GUIDE TO HBV AND PREGNANCY

Vertical transmission risk

• Mother-to-child transmission of hepatitis B is very high – around 90% (BASHH 2008). The majority of transmission occurs during childbirth although immunisation of the baby can prevent around 90% of newborn infections. There is an assumption and some evidence to suggest that some of the remaining 10% who do not respond to neonatal immunisation are infected by intrauterine transmission during pregnancy (Hou et al, 2005; Jonas, 2009).

Mode of delivery

• There is no conclusive evidence about mode of delivery and HBV transmission (Umar et al, 2013). The obstetrician will discuss options with each woman and take individual clinical factors into consideration.

Reducing HBV mother-to-child transmission

• The high rate of mother-to-child transmission can be largely prevented through immunisation (over 90% effective). If the mother’s antenatal hepatitis B surface antigen test is positive (HBsAg) an immunisation programme is started at birth to enable the baby to develop immunity.

• The midwife delivering intrapartum care notifies the neonatal paediatrician that the woman is in labour and ensures that the medications for the baby are in stock. Within 12 hours of birth the baby may receive immunoglobulin (which neutralises the virus) and the first dose of the vaccine. The baby is provided with an accelerated schedule in four doses at 0, one, two and 12 months. Babies born to mothers infected with hepatitis B require a 5th booster dose at 39 months.

• Immunity checks are carried out approximately two months after their vaccine at 12 months. The GP and health visitor are informed, as they are responsible for ensuring that the baby receives all the vaccines to complete the immunisation programme. The SIRS (Scottish Immunisation Recall System) database is notified to alert staff that administration of the vaccine is due. When the mother leaves hospital with her baby she is given a hepatitis B immunisation record card. Healthcare staff should refer to the ‘Hepatitis B Antenatal Resource Pack’:

• The Health Protection Team (Public Health) is also informed about any person with hepatitis B infection (HBsAg positive), as

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it is important to trace contacts. Sexual partners, children and other household contacts are offered testing and immunisation where appropriate.

Immunisation for at risk pregnant women

• Immunisation for hepatitis B should be considered for at-risk pregnant women – for example all drug users. Neither pregnancy nor breastfeeding is considered a contraindication to immunisation. There are no apparent adverse effects to the developing fetus since the vaccine is not alive.

• It is recommended to offer all women with a history of injecting drug use full screening for HBV in pregnancy (i.e. the Ab test in addition to the Ag test). Women with no prior infection with HBV can be safely immunised during pregnancy (NHS Lothian, 2012).

• Hepatitis B and hepatitis A immunisation is recommended for any hepatitis C-positive or HIV-positive woman (BHIVA 2008, Salisbury et al 2006) and is also recommended for all injecting drug users.

Immunisation for others at risk

• It is recommended that pregnant women’s sexual partners with a history of drug use have screening for HBV.

• Hepatitis B immunisation is recommended for all babies born to injecting drug users (both mothers and fathers). Current sexual partners and household contacts (including existing children) are immunised against hepatitis B.

• Hepatitis A immunisation is recommended for all injecting drug users.

Breast feeding

• Before the availability of the hepatitis B vaccine, HBV transmission through breastfeeding was not reported. Breastfeeding can be promoted as per the Infant Feeding Policy, NHS Lothian (2013).

For the Hepatitis B Antenatal Resource Pack: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/ReproductiveMedicine/PoliciesAndGuidelines/Documents/Maternity%20RIE/Antenatal/Hep%20B%20resource%20pack%20%2030-11-10.pdf The protocol for Hepatitis B immunisation for babies born to drug using parents is available at:http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/PublicHealth/HealthProtection/Immunisations/Pages/Pre-exposureHepatitisBimmunisationfor.aspx

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CO-INFECTION (HIV AND HEPATITIS) Co-infection with HIV, HCV and HBV can occur due to shared routes of transmission. The mother-to-child transmission of HCV can rise to up to 40% in pregnant women co-infected with HCV and HIV. Effective treatment of HIV in the mother and baby will reduce the risk of HCV transmission as well as the risk of HIV transmission. If the mother is receiving ART and there are no obstetric complications, vaginal delivery can be recommended. Caesarean Section may be considered in some circumstances and there should be discussion between the mother and obstetrician. BHIVA (2010) have produced guidelines on treatment for co-infection with HIV and hepatitis C or hepatitis B available at: http://www.bhiva.org/HepBC2010.aspx and guidelines on management of HIV infected mothers at: http://www.bhiva.org/documents/Guidelines/Pregnancy/2012/hiv1030_6.pdf Follow-up All infants and children born to BBV positive mothers are followed up by a paediatrician based at the Royal Hospital for Sick Children – see the Services section. SOCIAL SUPPORT All professionals supporting infected pregnant women should be aware of the psychosocial issues that can impact on treatment and care. Women may need considerable help and support to come to terms with the implications of their diagnosis and the management of their infection.

• An early referral for psychosocial support for the newly diagnosed pregnant woman is recommended

• Consider specially tailored antenatal care • All positive pregnant women should be encouraged to disclose their status to their

partner but this may require time and support from the health/social care team • Testing other biological children for BBVs is recommended but can often be

deferred until after delivery. There are services available to support positive individuals and their families. See below and the Social Care section. Waverley Care provides emotional and social support to those infected with hepatitis and HIV, http://www.waverleycare.org/. The Children’s Liver Disease Foundation is an organisation that specialises in supporting children with liver disease, www.childliverdisease.org.

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SECTION REFERENCES BASHH (2008) 'United Kingdom National Guideline on the Management of the Viral Hepatitides A, B & C 2008'. Available at: http://www.bashh.org/documents/1927.pdf BHIVA (2012) 'British HIV Association guidelines for the management of HIV infection in pregnant women'. Available at: http://www.bhiva.org/documents/Guidelines/Pregnancy/2012/hiv1030_6.pdf Coavadia, H.M., Rollins, N.C., Bland, R.M., Little, K., Coutaoudis, A., Bennish, M.L., and Newell, M (2007) 'Mother-to-child transmission of HIV-1 infection during exclusive breastfeeding in the first 6 months of life: an intervention cohort study'. Lancet 369 pp 1107-1116 De Ruiter, A., Mercey, D., Anderson, J., Chakraborty, R., Clayden, P., Foster, G., Gilling-Smith, C., Hawkins, D., Low-Beer,N., Lyall, H., O’Shea, S., Penn, Z., Short, J., Smith, R., Sonecha, S., Tookey, P., Wood, C., and Taylor, G. (2008) ‘BHIVA and Children’s HIV Association Guidelines for the management of HIV infection in pregnant women 2008’. HIV Medicine 9 pp 452-502. Available at: http://www.bhiva.org/cms1221368.asp Health Protection Agency (2013) 'Hepatitis C: general information'. Available at: http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/HepatitisC/GeneralInformation/ Hou, J. Liu, Z. Gu, F. (2005) 'Epidemiology and Prevention of Hepatitis B Virus Infection'. International Journal of Medical Science. 2(1), pp 50-57 Jonas, M. (2009) 'Perinatal Hepatitis B virus transmission'. Liver International. 29(s1), pp 133-139 NHS Lothian (2012) 'Guidance for Immunisation of drug users and close contacts against Hepatitis A and B'. Available at: http://www.escro.co.uk/Trusts/Lothian/documentation/lo_Guidance_for_Immunisation_Hapatitis_A%20_B.pdf Public Health England (2013) 'Immunisation Against Infectious Disease'. ("The Green Book"). Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_079917 SIGN (2013) 'Management of Hepatitis C: a national clinical guideline'. Available at: http://www.sign.ac.uk/pdf/sign133.pdf Umar, M. Bushra, H. Umar, S. Khan, K. (2013) 'HBV Perinatal Transmission'. International Journal of Hepatology. Available at: http://www.hindawi.com/journals/ijhep/2013/875791/ World Health Organisation (2013) 'Hepatitis B'. Available at: http://www.who.int/mediacentre/factsheets/fs204/en/ World Health Organisation (2013) 'Hepatitis C'. Available at: http://www.who.int/mediacentre/factsheets/fs164/en/

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INFECTION CONTROL SUMMARY BOX

• The potentially infectious nature of blood and all body substances means the implementation of infection control practice in all healthcare settings is essential.

• Standard precautions are required in the treatment and care of all patients to prevent transmission of HIV, HCV, HBV, and HAV.

• Healthcare workers have a responsibility to protect themselves and their patients from exposure to blood borne viruses within all healthcare settings.

• Individuals with a blood borne virus, or people living with someone with a blood borne virus, need to be aware of basic measures that will reduce risk of transmission to close contacts and with people they live.

It is the responsibility of all healthcare staff to follow infection control guidance. All healthcare staff should implement standard precautions. Standard precautions include aseptic technique, barrier protection, safe disposal systems, and the appropriate use of instruments and equipment. They are effective in the prevention of the transmission of blood borne viruses. Additional precautions, transmission-based precautions, are necessary to prevent the transmission of other important pathogens, e.g. tuberculosis (airborne route of transmission). The principles of Standard Precautions and decontamination procedures are the same whether caring for someone in a health centre, hospital, residential centre or patient's own home. Lothian Infection Control Manual local policies are available at: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/InfectionControl/icm/Pages/default.aspx Alternatively, contact the Infection Control Team if you have any questions: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/InfectionControl/Pages/default.aspx SECTION LINKS FOR INFECTION CONTROL Clearance for HealthCare Workers Standard Infection Control Precautions Body Fluid Spillage Procedure Management of Needle Stick and other contaminated Injuries Post-exposure Prophylaxis Social and Household Transmission Guidance Immunisation – see the Prevention section for guidance

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CLEARANCE FOR HEALTHCARE WORKERS • The General Medical Council (GMC), Nursing and Midwifery Council (NMC) and

General Dental Council (GDC) offer guidance on professional accountability of doctors, nurses and dentists.

• Department of Health (2007) and Scottish Government (2008) published guidance on health clearance for serious communicable diseases (HIV, hepatitis B, hepatitis C and TB). It recommends: pre-appointment/pre-admission health checks for serious communicable diseases for ALL new entrants to the NHS, including healthcare students. This includes checks for TB disease/immunity and hepatitis B immunity (with immunisation if needed), and the offer of testing for hepatitis C and HIV.

Currently all healthcare workers who are involved in Exposure-Prone Procedures (EPP) must be up-to-date with hepatitis B immunisation and must show an adequate immunity status, or be non-infectious with HBV. They must also be non-infectious with HIV. Further Scottish National Guidance on Clearance can be found at: http://www.scotland.gov.uk/Publications/2008/04/25104624/0 Further guidance on infected healthcare workers can be found at: http://www.hps.scot.nhs.uk/bbvsti/guidelines.aspx STANDARD INFECTION CONTROL PRECAUTIONS

• Healthy intact skin provides an effective barrier against infection • Cover all cuts, abrasions and skin lesions with waterproof dressing • Hand washing between procedures and patients is an important factor in preventing

the spread of infection • Take care with the disposal of needles and syringes – never re-sheath needles • Wear gloves when using sharps – they may not prevent injury but they do remove a

lot of blood from the sharp, reducing the chance of infection • Clean all patient equipment thoroughly • Never re-use single use equipment • Wear the appropriate protective clothing for the situation and task • Cover any cuts or abrasions with a waterproof dressing • Wash hands after handling all waste or laundry • Dispose of waste appropriately (e.g. sharps containers).

See the Lothian Infection Control Manual for detailed advice. BODY FLUID SPILLAGE PROCEDURE

• Deal with any blood or body fluid spillage promptly as per Lothian policy: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/InfectionControl/icm/Documents/CP009_v2.1.pdf

• Get someone to guard the area while you collect the necessary equipment • Use disposable nitrite gloves, disposable plastic apron and eye protection if

necessary • Clean area with the advised disinfectant as per the policy (link above), dry area well

with disposable towels • Discard all towels and protective wear in the appropriate wastage bags • Cleanse hands as per NHS Lothian hand wash policy • If further cleansing is required contact Domestic Services.

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MANAGEMENT OF NEEDLE-STICK AND OTHER CONTAMINATION INJURIES

Transmission risk following needle

stick injury Procedure following injury

HIV 0.3%

HEPATITIS C PCR positive

3% - 10%

HEPATITIS B 30%

• Wash thoroughly with soap and lukewarm water, do not scrub

• Gently encourage bleeding • Cover with a waterproof plaster. • Thoroughly irrigate exposed mucous

membranes and eyes with water • Refer to the policy on the intranet • Consider source patient testing • Report incident to line manager as soon as

possible • Contact Occupational Health Service • Follow normal procedures for dealing with

contamination – see Lothian Infection Prevention and Control Manual

• Report the injury to your manager and follow the Standard Operating Procedure (for needle-stick injury, click on the link to access the Procedure)

Whom to contact following injury

For community exposure, expert advice is available from on-call consultants in GUM or RIDU via switchboard 0131 536 1000 and out of hours RIDU only on the same number. For occupational exposure contact the Occupational Health Service for NHS Lothian on 0131 537 9369 or outwith normal hours 0131 537 6000.

POST-EXPOSURE PROPHYLAXIS AND POST-SEXUAL EXPOSURE (PEP and PEPSE) Following any suspected exposure to blood borne viruses seek expert advice and assessment for the appropriateness of PEP or PEPSE (post-sexual exposure). Consult GUM for HIV, specialist virology department for HBV or HCV and Occupational Health for NHS occupational exposure. Occupational Health Service (OHS) are contactable on 0131 537 9369 or outwith normal hours 0131 537 6000. Click on the links to access the NHS Lothian PEP Policy and the Prevention section. SOCIAL CONTACT/HOUSEHOLD TRANSMISSION GUIDANCE Infection is not acquired through everyday social contact, for example from sharing a cup for drinking or by touching an infected person. However, if a person is infected with a blood borne virus they should use their own personal items such as nailbrush, scissors, tweezers, or razor and be meticulous about cleaning up any blood from cuts or scratches. Undiluted household bleach should be used to clean up blood from floors and work surfaces. Scratches, cuts and wounds should be carefully cleaned and covered with a waterproof dressing or plaster. Sanitary products should be safely disposed of. Members of a household where one person is infected with a blood borne virus should be aware to take basic precautions with blood and body fluids.

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LIVING WITH A BLOOD BORNE VIRUS

SUMMARY BOX

• Living with one or more blood borne viruses can have a huge impact on an individual’s quality of life. This can affect their physical health, mental health, relationships, employment, financial and social circumstances.

• The stigma associated with a positive BBV status or a perceived positive status can act as a barrier to testing, accessing services, seeking treatment and engaging with treatment.

• On-going support, advice, and counselling may be required to help people cope when they are ill and recovering from illness.

• Individuals can be given advice and support on how to remain healthy from services, carers, family or friends.

Blood borne viruses are a long term condition and coping with any long term condition can be complex. People can find it hard to deal with fluctuating ill health, which means people can struggle to maintain their sexual identity, maintain relationships and become socially isolated. This can be due to discrimination or a feeling that they have lost their BBV-negative status. Those who have been unwell and recovered to a good level of functioning may well find themselves caught in a ‘benefit trap’ where the level of benefits that they are receiving outweigh the financial rewards of going back to work. These issues, and others, make it essential that people receive good support from the appropriate resource throughout the course of their condition. This section considers issues that BBV-positive people may have to contend with on a daily basis. See the Services section for various support services relating to the topics in this chapter. SECTION LINKS FOR LIVING WITH A BLOOD BORNE VIRUS Coping with a Diagnosis Information on Staying ‘Healthy’ Stigma and Discrimination Employment Immigration Travel and Travel Insurance

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COPING WITH A DIAGNOSIS It is important to provide individuals who have been newly diagnosed as BBV-positive information about sources of support. Giving written information is important as they may not take in what is said during a consultation. Further information can be found on: HIV Scotland, http://www.hivscotland.com/living-with-hiv/i-just-found-out/. Hepatitis Scotland – Hepatitis C http://www.hepatitisscotlandc.org.uk/just-found-out.aspx. Hepatitis B Foundation UK, http://www.hepb.org.uk/. They offer advice and information to individuals with HBV infection or to their families and friends and provide a 'bespoke' service by phone/email/post. Hepatitis Scotland – Hepatitis B http://www.hepatitisscotlandb.org.uk/index.php/just-found-out/. WHOM TO TELL Telling other people about their BBV status can be daunting for the individual. There are positive and negative aspects and individuals should be encouraged to consider both before they make the decision to disclose their status. Positive aspects can include:

• Get support and help • Feel less isolated • Get acceptance and understanding

• Feel stronger • Meeting others in a similar position • Tell their story

Negative aspects can include:

• Once disclosed there is no taking it back

• Rejection • People may think about them in a

different way – stigma and discrimination

• People may gossip • The positive individual may end up

having to support the people they tell!

There may be some situations where the positive individual is encouraged to tell their sexual partner(s) about their BBV-positive status and the health care professional may be obliged to inform the partner(s) due to the risk of transmission.

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INFORMATION ON STAYING ‘HEALTHY’ It can be helpful to give a BBV-positive individual advice on:

Good Nutrition

HIV – good nutrition is necessary to help maintain the immune system. Individuals may also need to consume an adequate diet to help with the absorption of medication. Diet can be altered to combat adverse effects such as weight loss, diarrhoea, lipodystrophy, cardiovascular risk. See Nutrition and HIV at http://www.tht.org.uk/myhiv/Staying-healthy/Eating-and-drinking.

Hepatitis – healthy nutrition is recommended for people with chronic hepatitis (as for most others). In more advanced liver disease malnutrition can be a problem – assessment by a dietitian is indicated. Diet can also help with ascites, encephalopathy, and fatigue in more advanced liver disease. Advice on liver disease and diet can be found at http://www.britishlivertrust.org.uk/wp-content/uploads/DLD0411.pdf.

Exercise Exercise is important in weight control, strengthening and toning muscle, combating fatigue, strengthening bone, reducing cardiovascular risk, and lifting mood.

Advice on exercise and HIV can be found at the AIDSMAP site http://www.aidsmap.com/Exercise/page/1254865/.

Advice on exercise and hepatitis C can be found at The Hepatitis C Trust site http://www.hepctrust.org.uk/.

Referral for exercise may be indicated: For Edinburgh - see http://www.refhelp.scot.nhs.uk/index.php?option=com_content&task=view&id=621&Itemid=1416.

For Midlothian - see http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view=article&id=641:exercise-referral-midlothian&catid=76&Itemid=1416.

Regular check-ups

It is important for anyone with HIV or viral hepatitis to attend for regular health check-ups at either outpatient department or GP appointments, usually every 3-6 months. If an individual develops unwanted and adverse effects from medication they should also attend for a check up.

Mental health

Problems such as stress, anxiety and depression are more commonly experienced by BBV-positive individuals than the general population. Encouraging people to talk about problems can help and involvement in a support group can help reduce feelings of isolation. Encourage them to approach the relevant service, and if necessary seek assessment and treatment. Individuals can receive psychiatric assessment/treatment as part of their BBV treatment. BBV support services are also available in the community. See: http://www.waverleycare.org/content/counselling/123/.

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Safer drug and alcohol use

The use of alcohol and drugs can be perceived as positive by an individual, and many people use them to relax. However they can lead to problems with adherence to medication and have negative effects on mental/physical health. Some drugs can interact with prescribed medications and lower treatment completion. Use is also linked to unsafe sex with increased risk taking while under the influence of drugs and alcohol (Sublette et al, 2013; Independent Advisory Group on Sex and HIV, 2007).

There is no evidence to show that moderate drinking (one or two units per day) has any negative effect on HIV, however heavy drinking can have an effect on the immune system, ability to tolerate drugs, treatment adherence, and how people respond to treatment medication.

Drinking heavily can cause liver damage and for a person with hepatitis can lead to a quicker disease progression. Individuals with hepatitis B or C should be advised that even drinking in moderation can increase the progression of liver disease (SIGN, 2013; World Health Organisation, 2002).

Smoking Smoking has been shown to be a risk factor in progressing liver problems in people with viral hepatitis. It reduces the chance of a good response to treatment. People with HCV should be advised that smoking can increase the progression of liver disease (SIGN, 2013).

Smoking has also been linked to a higher likelihood of acquiring certain AIDS-defining opportunistic infections, such as PCP. There is also a higher incidence of adverse metabolic effects among people with HIV who smoke. People should be encouraged and supported to stop smoking. See AIDSMAP Smoking at http://www.aidsmap.com/en/docs/12374D45-99EB-4F5F-A402-6BA1F8A13E53.asp.

Safer sex Safer sex is important to reduce the risk of contracting STIs and the transmission of BBVs. See Appendix F for a leaflet on safer sex and blood borne viruses.

Safer injecting practices

Safer injecting is important to reduce the risk of transmission of BBVs – see Appendix G for leaflet on injecting drug use and blood borne viruses. Advice and the provision of sterile injecting equipment is also important.

Reducing infection in the home

It is important to advise BBV-positive individuals how to take simple infection control procedures at home – see the Infection Control section.

Dealing with stigma

Individuals may require support in dealing with stigma and discrimination in different situations. Family and friends, the community, the media, relationships, the work place and health care services can all be sources of stigma and discrimination. It may be necessary to support an individual in challenging and making a complaint about discrimination – in some cases direct advocacy will be necessary. See Combatting Stigma: http://www.aidsmap.com/Combatting-stigma/cat/80326/

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Sources of Support

It is important to explore sources of support for individuals, both in the short and long term, whether from family, relatives, partners or services.

The Thistle Foundation’s Lifestyle Management Program may be of interest to people looking for advice on living with a long term condition. Contact 0131 656 7345 for further details or see leaflet available at: http://www.refhelp.scot.nhs.uk/dmdocuments/ME-CFS/Lifestyle_Management_Leaflet1.pdf

Also the Waverley Care Self Management Program for people with HIV and hepatitis C:

http://www.waverleycare.org/content/selfmanagementprogramme/216/

For further information sources on healthy living: Hepatitis C – http://www.hepatitisscotlandc.org.uk/living-with-hep-c.aspx Hepatitis B – http://www.hepatitisscotlandb.org.uk/index.php/living-with-hepatitis-b/how-to-help-your-body/ HIV – http://www.tht.org.uk/myhiv/Staying-healthy. STIGMA AND DISCRIMINATION Stigma is a form of prejudice that discredits or rejects an individual or group because they are seen to be different from ‘mainstream’ society. When people act on their prejudice stigma can turn into discrimination. Discrimination can be defined as any action or measure that results in someone being treated unfairly because they belong, or are perceived to belong, to a particular ‘undesirable’ group (e.g. a gay man discriminated against because of his sexual orientation; a person discriminated against because of their race, and an individual discriminated against due to their hepatitis C positive status). See AIDSMap for information on Stigma and Discrimination. Available at: http://www.aidsmap.com/stigma/What-is-stigma/page/1260706/ Stigma and discrimination can lead to:

Failure to seek a test This can lead to late diagnosis and disease progression.

Increase in transmission People who are diagnosed as BBV-positive are more likely to take steps to avoid transmission than people who are unaware of their positive status.

Failure to access services

Individuals who have had a test may not feel able to access services for fear of others identifying that they are BBV-positive and the negative consequences which may follow.

Failure to adhere to treatment

Individuals may not feel that they can take their BBV-related medications or attend appointments in case their BBV status is revealed.

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Social isolation Individuals can lose contact with family and friends and find it hard to access other forms of social support.

Discrimination at work Employers can make assumptions about an individual’s ability to perform in their job, and work colleagues can also make negative assumptions about the individual concerned. Work opportunities may be reduced i.e. promotion, training.

Psychological problems Individuals can suffer from low self-esteem, anxiety and depression.

Physical problems The failure to seek a test and treatment, adhere to medication, access support services, or sleep or eat properly can have a devastating effect on an individual’s physical health.

Quality of life Studies have found quality of life is significantly reduced because of stigma. Stigma has also been associated with a higher subjective level of symptoms.

Sources: Miller et al 2012, Manos et al 2013, HIV Scotland 2011, Golden 2006, Lert and Kazatchkine 2007, Strauss and Teixeira 2006, Modabbernia et al 2013. What can healthcare staff do to combat BBV-related stigma and discrimination? Reducing the stigma surrounding blood borne viruses is an important tool to help reduce transmission and improve the treatment of BBVs. The Terrence Higgins Trust (THT) has carried out work on reducing stigma within the health service. The main points to aid in reducing stigma are:

• Be clear in your commitment to prevent discrimination and stigmatisation of people living with BBV and of those assumed to be BBV-positive

• Be explicitly supportive of BBV-positive patients so they are not afraid of being discriminated against

• Provide staff and colleagues with access to information about BBVs and if appropriate training workshops

• Display BBV awareness raising educational posters and anti-discriminatory messages in staff areas and waiting rooms

• Promote guidelines on the treatment of BBV-positive individuals • Adopt and promote an equality and diversity policy in your practice and organisation • Adopt a BBV policy in your practice and organisation or make sure that BBVs are

mentioned in your statement of good practice For further information on healthcare rights: http://www.hivscotland.com/living-with-hiv/your-rights/

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Some groups vulnerable to BBV infection may suffer compounding discrimination due to racist, sexist, xenophobic and homophobic views. These groups can include:

• Black and ethnic minority groups • Immigrants / asylum seekers / refugees • Gay, Bisexual, and other Men who have Sex with Men (MSM) • Injecting Drug Users • Prisoners • Sex workers • Women

Stigma/discrimination is prevalent for people with a BBV from the BME, community; particularly from African communities. They can face stigma-related to their race and HIV status (Scottish Government, 2010). Waverley Care’s African Health Project provides support to people from African communities affected by HIV. For further information: http://www.waverleycare.org/content/africanhealthproject/117/. EMPLOYMENT There are some jobs which people with a BBV diagnosis are restricted from doing. If an individual works in healthcare they are obliged to inform and follow advice from their occupational health department (see the Infection Control section for details). They are not excluded from working in health care settings. See the NAM for guidance on employment: http://www.aidsmap.com/Work/page/1254870/ In most cases people are under no obligation to tell their employer about a BBV diagnosis. However, they may want to consider the following: Legal obligations – If an individual’s condition physically and/or mentally affects the way they perform at work, their employer has legal obligations towards them. This applies under the Equality Act (2010) if they fulfil the criterion that defines 'disability'. They do not have to name their condition to be covered under this Act. If they are covered by this Act the employer is obliged to make certain allowances. This can include reasonable adjustments, including altering working hours and providing adaptations to help the person do the job. For further information: https://www.gov.uk/rights-disabled-person/overview Sick Leave Allowances – A BBV-positive individual may be entitled to statutory sick pay (SSP) to cover any medical appointments or sickness absences. Details of the latest SSP entitlements and other advice are. Available at: the Department for Work and Pensions website: http://www.dwp.gov.uk/ IMMIGRATION People who come to the UK can face a number of issues including:

• Financial hardship • Limited access to NHS services • Housing issues • Employment issues.

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An individual’s status as a legal immigrant, an illegal immigrant, an asylum seeker, or a refugee can dictate whether they have a right to employment, benefits, housing, and free access to health-care services. For more information: Scottish Refugee Council http://www.scottishrefugeecouncil.org.uk/how_we_can_help/other_useful_websites

Home Office UK Border Agency, http://www.bia.homeoffice.gov.uk/ Information on immigration and customs regulations and how to make an application to stay in the UK.

Terrence Higgins Trust, http://www.tht.org.uk/myhiv/Your-rights/immigration Information on HIV and immigration. TRAVEL AND TRAVEL INSURANCE

• Some countries such as the United States require additional visas to allow people who are HIV positive to enter the country. It is important to find out about entry restrictions before travel – contact the Embassy or High Commission of the country concerned, http://uk.embassyhomepage.com/

• People should take extra supplies of medication with them • People should carry their medical details with them – they may require treatment

abroad • Immunisations – people should find out which immunisations they need and whether

it is safe to have them • Consideration should be made about fitness to travel • Travel insurance is available but will be more expensive for someone who is BBV-

positive • It is necessary to maintain safer sex and safer injecting behaviours when travelling,

especially in areas of high BBV prevalence • The Blood Care Foundation can ensure the supply of safe blood to members

throughout the world. Payment is required and they are a not-for-profit organisation, http://www.alchealth.com/bcf.htm

• For comprehensive advice about travel and HIV, see AIDSMAP Travel at http://www.aidsmap.com/Travel/page/1497497/.

Travel Insurance Most travel policies exclude liability for paying out on medical claims that arise from HIV, AIDS, hepatitis C and sexually transmitted infections. However, some travel policies do cover HIV-related claims. Contact the Terrance Higgins Trust for information, http://www.tht.org.uk/myhiv/Your-rights/Travel/Travel-insurance The Association of British Insurers, https://www.abi.org.uk/

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SECTION REFERENCES Golden, J., Conroy, R.M., Dwyer, A.M., Golden, D., and Hardouin, J-B. (2006) ‘Illness-related stigma, mood and adjustment to illness in persons with hepatitis C’. Social Science and Medicine 63 pp 3188-3198 HIV Scotland (2011) Select Committee on HIV and AIDS in the UK – call for evidence. Available at: http://www.hivscotland.com/downloads/1314805124-Lords%20Select%20Committee%20-%20HIV%20Scotland%20Submission.pdf Independent Advisory Group on Sex and HIV (2007) 'Sex, Drugs, Alcohol, and Young People'. Available at: http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_075591.pdf Lert, F., and Kazatchkine, M.D. (2007) ‘Antiretroviral HIV treatment and care for injecting drug users: An evidence based overview’. International Journal of Drug Policy 18 pp 255-261 Manos, M. Ho, C. Murphy, R. Shvachko, V. (2013) 'Physical, social, and psychological consequences of treatment for hepatitis C: a community-based evaluation of patient-reported outcomes'. The Patient, 6(1), pp 23-24 Modabbernia, A. Poustchi, H. Malekzadeh, R. (2013) 'Neuropsychiatric and psychosocial issues of patients with hepatitis C infection: a selective literature review'. Hepatitis Monthly, 13(1) Miller, E. McNally, S. Wallace, J. Schlichthorst, M. (2012) 'The ongoing impacts of hepatitis c – a systematic narrative review of the literature'. BMC Public Health, 12(672) Scottish Government (2010) 'The Sexual Health and Blood Borne Virus Framework 2011-2015'. Edinburgh: Scottish Government SIGN (2013) 'Management of Hepatitis C – A National Clinical Guideline'. SIGN 133 – Available at: http://www.sign.ac.uk/guidelines/fulltext/133/index.html Strauss, E and Teixeira M.C.D. (2006) ‘Quality of life in hepatitis C’. Liver International 26 pp 755-765 Sublette, V. Douglas, M. McCaffery, K. George, J. Perry, K. (2013) 'Psychological, lifestyle and social predictors of hepatitis C treatment response: a systematic review'. Liver International, 33(6), pp 894-903 World Health Organisation (2002) Department of Communicable Diseases Surveillance and Response Hepatitis B. Available at: http://www.who.int/csr/disease/hepatitis/whocdscsrlyo20022/en/

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PALLIATIVE CARE SUMMARY BOX

• Palliative care is the identification, careful assessment and treatment of pain and other symptoms (physical, psychosocial, emotional or spiritual) and can be provided at any stage of a life-threatening illness.

• All patients, regardless of their diagnosis, should be able to access palliative care.

• Shared care among a multidisciplinary team is key to the provision of palliative care for people with advanced and terminal AIDS and hepatitis.

• The majority of palliative care is provided by generalist health and social care staff who refer for specialist input and management when needed.

• Palliative care and bereavement resources are available on the NHS Lothian Intranet.

SECTION CONTENT AND LINKS What is palliative care? Palliative care in HIV/Hepatitis Identification of patients and care planning at the end of life Anticipatory Care Planning Symptom Control Pain and Assessment of Pain Treatment Decisions Specialist Palliative Care Services and Guidance Resources DNAR Policy and Preparing for and Dealing with Death Confidentiality WHAT IS PALLIATIVE CARE? Palliative care aims to improve the quality of life of patients and their families who are facing problems associated with a life-threatening illness. It involves the prevention and relief of suffering by means of early identification, careful assessment and treatment of pain and other problems, physical, psychosocial or spiritual. All patients, regardless of diagnosis, should be able to access palliative care appropriate to their individual needs (Scottish Government, 2008). For this to happen in practice, an integrated approach is essential. PALLIATIVE CARE IN HIV/HEPATITIS Good quality palliative care can prevent frequent visits to the hospital or clinic. Failure to provide palliative care can result in untreated symptoms that hamper an individual’s ability to continue his or her activities of daily life. Source: World Health Organisation, 2002 Clinical evidence has shown that patients with HIV infection require palliative care in order to:

• Control pain and other symptoms • Promote adherence through reduction of side-effects and toxicity associated with

antiretroviral therapy (ART)

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• To manage life limiting co-morbidities such as cancers and end stage liver disease • To provide end of life care for those whom antiretroviral therapy fails or are unable

to access it. Source: Harding et al (2005)

Identification of patients and Care Planning at the End of Life People within the last few months of their life should be identified and assessed for physical, psychological, social and spiritual palliative care needs. This will encourage the planning and implementation of effective palliative treatment and care. The Supportive and Palliative Care Indicators Tool (SPICT) is recommended for use by GPs to identify patients at risk of deteriorating and dying. This should then encourage placement of them on GP practice palliative care register. This tool is clear, concise and evidence based. It can be used by a range of professionals in various care settings. For further information on SPICT and the support at the end of life, see www.spict.org.uk. For further resources for palliative care, see http://www.nhsinform.co.uk/palliativecare. Anticipatory care planning This is a central document that should ensure between all health care professionals involved and cover the following key points:

• Next of kin and details of any welfare attorney • Level of intervention for expected clinical deterioration • Preferred place of care • CPR status • Wishes on tissue donation • Medication prescribed for use if required

A care plan could be documented on the Key Information Summary (KIS) which is part of the central GP practice electronic software system. This system with patient consent can mean important information is available to out of hour’s services and some secondary care services. For further information on KIS, see http://intranet.lothian.scot.nhs.uk/nhslothian/healthcare/a-z/anticipatorycareplan/Pages/default.aspx. Symptom control In advanced disease, individuals with HIV can experience symptoms such as anorexia, fatigue, pain, nausea and vomiting, diarrhoea, fever, and cough. Symptoms can arise from the direct effect of HIV viraemia, effects from ART drug therapy, opportunistic diseases, immune reconstitution or unrelated causes. Individuals with viral hepatitis can experience symptoms such as fatigue, anorexia, weight loss, pain, fever, poor concentration, anxiety, and depression. End stage liver disease is associated with ascites, varices, encephalopathy, pruritis, fatigue and malnutrition. Symptoms must be assessed, management agreed and implemented, and ongoing re-assessment undertaken if effective symptom control is to be achieved. National Scottish palliative care guidelines are being developed and should be published in 2014. They will be based on existing Lothian guidelines: http://www.palliativecareguidelines.scot.nhs.uk/default.asp.

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Pain Pain is experienced by around 50-88% of individuals with advanced HIV/AIDS disease, and studies have shown it is often under assessed, or under estimated (Harding et al, 2005; Nicholson, 2000; Potterat and Brody, 2002). Pain associated with infections (e.g. herpes simplex infection) is common even in early disease. Headache, arthralgia and myalgia are more common than in the non-infected population. Painful peripheral neuropathy occurs in up to 20% of individuals receiving HIV medication which may be caused by drugs, or HIV, or both. Pain is also common in hepatitis, including arthritis, fibromyalgia, and peripheral neuropathy. Prevalence rates for general musculoskeletal pain reported among HCV clinic populations range from 50-81% (Silberbogen et al, 2007). End stage liver disease brings complications such as ascites, varices, encephalopathy, peritonitis, and pruritis – all with associated pain, and severe muscle and joint pain (Adam, 2000; Larson and Randall Curtis, 2006). Assessment of pain Thorough assessment of pain, and the cause of pain, is very important. A significant proportion of patients will have more than one type of pain and may require different treatments. Advice on the choice of treatment and an explanation of any likely adverse and unwanted effects of medication can improve adherence and lead to improved treatment outcomes. A guide to the assessment and management of pain is available in the Lothian palliative care guidelines. Achieving adequate pain relief in current drug users may be problematic. Many drug users will be on substitute prescribed opiate drugs (Methadone, Dihydrocodeine, Buprenorphine or Morphine Sulphate Tablets (MST)) as well as benzodiazepines (Valium or Temazepam). Opioid receptors may be saturated and any pain assessment has to take this into account so that adequate pain relief can be given. Advice can be sought from palliative care teams, or from the Consultant/Senior Lecturer in Anaesthesia and Pain Medicine (currently Lesley Colvin) at the WGH on 0131 537 1646. The potential of antiretroviral medications for interactions must be considered when prescribing analgesics. For information: http://www.hiv-druginteractions.org. Treatment decisions The views of the patients and carers, the treatment team, primary healthcare team, and the specialist palliative care team may all help to reach a balanced decision about appropriate treatment. In some cases it is not clear whether ‘aggressive’ curative treatment is the best option. There may come a point when the patient decides that although further life-prolonging treatment is possible they would rather pursue quality than quantity of life. These decisions require much discussion and appropriate information. Specialist palliative care services and guidance resources Details of Lothian’s palliative care services are. Available at: http://www.nhslothian.scot.nhs.uk/Services/A-Z/PalliativeCare/Pages/default.aspx. In addition, Milestone (Waverley Care) provides short term residential care to people with HIV/AIDS and hepatitis C. http://www.waverleycare.org/content/ourservices/108/.

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Information about Palliative Care services throughout Scotland can be found at: http://www.palliativecarescotland.org.uk/. For information and a series of leaflets about the end of life and end of life care planning, see http://www.goodlifedeathgrief.org.uk/content/online_resources/. Confidentiality Some individuals with HIV/AIDS or viral hepatitis will have concerns about disclosing their infection status to various individuals including family, friends and carers, due to the fear of discrimination or rejection. Confidentiality issues may be of particular concern in small communities or in rural and remote areas, and may extend to consideration of the certified cause of death on the death certificate. Reassurance and assistance can be provided about appropriate disclosure. Explaining the process of death certification and the inclusion of diagnoses on a death certificate can help people deal with these fears. DNAR The do not attempt CPR policy is a framework for CPR decisions and has resources to inform patients in this process. This should clearly be discussed with patients/families and clearly documented. See the DNAR policy for further guidance: http://intranet.lothian.scot.nhs.uk/NHSLothian/Corporate/A-Z/Clinical%20and%20Corporate%20Learning/ClinEducationTrain/Resuscitation/dnarpolicy/Pages/default.aspx Preparing for and dealing with death Helping to prepare the individual and the relatives / friends for death is an integral part of palliative care. Details of useful agencies can be found at http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/A-Z/BereavementService/Pages/Resources.aspx

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SECTION REFERENCES Harding, R., Easterbrook, P., Higginson, I.J., Karus, D., Raveis, V.H., and Marconi, K. (2005) ‘Access and Equity in HIV/AIDS palliative care: a review of the evidence and responses’. Palliative Medicine, 19, pp 251-258 Larson, A.M. Randall Curtis, J. (2006) ‘Integrating Palliative Care for Liver Transplant Candidates “Too well for transplant, too sick for life"'. Journal of the American Medical Association, 295(18), pp 2168-2176 Nicholson, J. (2000) ‘Can the development of palliative care services meet the needs of people with HIV?’ Journal of Palliative Care, 16(2), pp 37-43 Potterat, J.J. and Brody, S. (2002) ‘HIV epidemicity in context of STI declines: a telling discordance.’ Sexually Transmitted Infections, 78, p.467 Scottish Government (2008) 'Living and Dying Well: a national action plan for palliative and end of life care in Scotland'. Edinburgh Silberbogen, A.K., Janke E.A., Hebenstreit, C. (2007) ‘A Closer Look at Pain and Hepatitis C: Preliminary Data from a Veteran Population’. Journal of Rehabilitation Research & Development, 44(2), pp 231-244 World Health Organisation (2002) 'Palliative Care'. Available at: http://www.who.int/hiv/topics/palliative/PalliativeCare/en/print.html.

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SERVICES The following list is of services specifically targeted at people infected or affected by BBVs. Click on the links for more information HIV, HEPATITIS C AND B TESTING SERVICES IN LOTHIAN

• Primary Care - GP General practitioners, practice nurses and some other primary health care staff will offer HIV, hepatitis B and C testing.

• Chalmers Sexual Health Centre 2A Chalmers Street, Edinburgh, EH3 9ES 0131 536 1070 http://www.lothiansexualhealth.scot.nhs.uk/Services/HowToFindUs/Pages/default.aspx. The website of the Chalmers Sexual Health Centre tells you where and when you can access the sexual and reproductive health services that you need. It lists the names of the services that are offered by NHS Lothian and other helpful organisations and gives you the place, the opening times and contact details.

• Regional Infectious Diseases Unit (RIDU) - BBV Testing Team Ward 41 Outpatient Dept, Western General Hospital, Edinburgh Tel. 0131 537 2843/2850 http://www.nhslothian.scot.nhs.uk/services/a-z/ridu/Pages/default.aspx HIV, hepatitis B and C testing and counselling clinic.

• Harm Reduction Team Spittal Street Centre – entrance via Lady Lawson Street Edinburgh EH3 9DU Tel. 0131 537 8300 They offer dry blood spot testing for hepatitis B and C and HIV.

• Specialist Virology Centre Royal Infirmary of Edinburgh, Little France Tel. 0131-242 6027/6048 Advice on laboratory testing services and results.

BBV TREATMENT SERVICES

• Centre for Liver and Digestive Disorders (CLDD) Royal Infirmary of Edinburgh, Little France Tel. 0131-242 3063 Care, monitoring and treatment for people with viral hepatitis including hepatitis B and C) +/- liver disease. Referral via GP or other hospital department.

• There are 4 HCV outreach clinics in Lothian staffed by BBV nurse specialists from RIDU and CLDD: • Edinburgh Access Practice at Leith Street and the Cowgate • North-East Recovery Hub, 5 Links Place, Leith Links, Edinburgh • DTTO, Alva Street • and in West Lothian HCV treatment clinics are also offered in HMP Edinburgh and Addiewell.

• Regional Infectious Diseases Unit (RIDU) Ward 41 Outpatient Dept, Western General Hospital, Edinburgh Tel. 0131 537 2843/2850 Care, monitoring and treatment for HIV, hepatitis B and C.

• Chalmers Sexual Health Centre 2A Chalmers Street, Edinburgh, EH3 9ES 0131 536 1070 http://www.lothiansexualhealth.scot.nhs.uk/Services/HowToFindUs/Pages/default.aspx. Care, monitoring and treatment for those with HIV.

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• Paediatric Services (BBV) Dr Laura Jones, Consultant Paediatricians, RHSC, Community Child Health Department, 10 Chalmers Crescent EH9 1TS Tel. 0131 536 0971 Provide specialist service for children and young people affected by HIV, hepatitis B and C.

HOSPICES

• St Columba’s Hospice Kirklands House, Gogarmuir Road, Gogarbank, Edinburgh EH12 9BZ Tel. 0131 551 1381 Fax: 0131 551 2771 E-mail: info@stcolumbashospice.org.uk http://www.stcolumbashospice.org.uk/ In-patient day care and counselling for those with advanced disease, and family support.

• Marie Curie Hospice Frogston Road West, Edinburgh EH10 7DR Tel. 0131 470 2201 Fax 0131 470 2200 E-mail: edinburgh.hospice@mariecurie.org.uk http://www.mariecurie.org.uk/ In-patient care, day care, care at home for those with limiting disease, and family support.

SOCIAL WORK SERVICES - incl Support for BBVs and Substance Misuse

• Edinburgh City For adult social care services contact: • Social Care Direct

Chesser House, 500 Gorgie Road, Edinburgh, EH11 3YJ Tel. 0131 200 2324 E-mail: socialcaredirect@edinburgh.gov.uk http://www.edinburgh.gov.uk/info/1347/social_care_and_health/716/contact_social_care

• Midlothian Contact one of the local social work centres below. • Loanhead Adults and Community Care

4 Clerk Street, Loanhead EH20 9DR Tel. 0131 271 3900

• Dalkeith Social Work Centre Fairfield House, 8 Lothian Road, Dalkeith, EH22 3AA Tel. 0131 270 7500

• West Lothian http://www.westlothian.gov.uk/social_health/

• East Lothian • East Lothian Council

John Muir House, Haddington, EH41 3HA Tel. 01875 824309 http://www.eastlothian.gov.uk/info/1347/social_care_and_health

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BBV SUPPORT SERVICES • Waverley Care

3 Mansfield Place, Edinburgh EH3 6NB Tel. 0131 466 9883 http://www.waverleycare.org/ Offer peer-to-peer, befriending, counselling and health advice. • Day Care Service (Milestone)

Tel. 0131 441 6989 http://www.waverleycare.org/content/milestone/110/

• Befriending Services Tel. 0131 441 6989 http://www.waverleycare.org/content/befriendingservices/119/ One-to-one befriending service.

• Counselling Service Tel. 0131 558 1425 http://www.waverleycare.org/content/counselling/123/ Short-term one-to-one counselling.

• Positive Help 13a Great King Street, Edinburgh EH3 6QW Tel. 0131 558 1122 Fax: 0131 558 3636 Email: office@positivehelpedinburgh.co.uk http://www.positivehelpedinburgh.co.uk/default.aspx?pageID=1 For HIV and hepatitis. Practical help to those affected by HIV/AIDS and hepatitis C in Edinburgh and the Lothians. Transport to appointments, and home support

• C Plus 22 Laurie Street, Edinburgh EH6 7AB Tel. 0131 478 7929 Email: cplus@addaction.org.uk http://www.addaction.org.uk/default.asp?section=2&sectionTitle=Homepage Lothian-wide support service for people with or affected by hepatitis C. Information, advice, one-to-one telephone support; complementary therapies and social activities. Also support attendance at appointments for treatment.

• Community HIV Team Spittal Street Centre, 22 Spittal Street, Edinburgh EH3 9DU Tel. 0131 537 8300 A community mental health service for people infected or affected by HIV who experience psychological or psychiatric problems. Includes community mental health nursing and clinical psychology. Referral by statutory and non-statutory services.

BEREAVEMENT SUPPORT

• Cruse Bereavement Care Scotland General bereavement counselling service 3 Rutland Square, Edinburgh EH1 2AS Cruse Edinburgh 0131 229 6275; Helpline Tel. 0845 600 22 27 Email: edinburgh@crusescotland.org.uk http://www.crusescotland.org.uk/ Bereavement Support Service Royal Infirmary of Edinburgh Advice and info on bereavement and signposting (they do not offer counselling). Tel. 0131 242 6995

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LOTHIAN SUBSTANCE MISUSE SERVICES • Edinburgh Alcohol and Drug Partnership

http://www.edinburghadp.co.uk/Pages/default.aspx • East Lothian Alcohol Problem Service (APS)

http://www.eastlothian.gov.uk/a_to_z/service/285/alcohol_advice_and_support • Midlothian and East Lothian Drugs and Alcohol Partnership (MELDAP,

Dalkeith) http://www.meldap.co.uk/index.php

• MELDAP Service Directory http://www.meldap.co.uk/data/uploads/service-directory-webview-jan-2013.pdf

• Midlothian Substance Misuse Service Glenesk Centre, 1/5 Duke Street, Dalkeith EH22 1BG Tel. 0131 660 6822 http://www.midlothian.gov.uk/info/1406/alcohol_drugs_and_substance_abuse/323/midlothian_substance_misuse_service

• West Lothian Addictions Care Partnership Consisting of SWAT, NHS Addictions Service, West Lothian Drug & Alcohol Service and Cyrenians Recovery Service. http://www.westlothian.gov.uk/social_health/1404/1405/

• East Lothian Locality Clinic Roodlands Hospital, Haddington, East Lothian Tel. 0131 660 3566 (Admin)

• Harm Reduction Team Spittal Street Centre, Lady Lawson Street, Edinburgh EH3 9DU Tel. 0131 537 8300

• Lothians and Edinburgh Abstinence Programme (LEAP) Woodlands House, Astley Ainslie Hospital, 74 Canaan Lane, Edinburgh EH9 2TB Tel. 0131 446 4400 http://www.nhslothian.scot.nhs.uk/services/a-z/leap/Pages/default.aspx LEAP is a 3-month treatment and rehabilitation programme for those dependent on alcohol and other drugs (including opiates, stimulants, cannabis, tranquillisers etc).

• Narcotics Anonymous Helplines 07071 22344 or 0300 999 1212

SERVICES TO SUPPORT SPECIFIC GROUPS Gay / bisexual / lesbian / transgender / MSM/ Prostitutes / Sex workers / Escorts

• Gay Men’s Health 10a Union Street, Edinburgh EH1 3LU Tel. 0131 558 9444. Email info@gmh.org.uk http://www.gmh.org.uk/about/home.html Counselling, group work, support, training and education.

• Lesbian, Gay, Bisexual and Transgender Centre for Health and Wellbeing 9 Howe Street, Edinburgh EH3 6TE Tel. 0131 523 1100. Email admin@lgbthealth.org.uk http://www.lgbthealth.org.uk/

• ROAM Tel. 077 7462 8227. Email: enquiries@roam-outreach.com http://www.roam-outreach.com/Pages/default.aspx BBV testing, general health testing and outreach work for men who have sex with men (MSM).

• SCOT-PEP – (Scottish Prostitutes Education Project) The Matrix, 62 Newhaven Road, Edinburgh EH6 5QB Tel. 0131 622 7550 http://www.scot-pep.org.uk/ Advice, support and information and clinic services for male and female sex industry

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workers. Safer sex supplies, personal alarms and needle exchange, ‘ugly mugs’ scheme (sharing info. about violent clients), remote reporting, police liaison for street-based sex workers.

Young People and Children

• Positive Help Tel. 0131 225 4766 http://www.positivehelpedinburgh.co.uk/page-sub.aspx?pageID=11 Befriending service to children and young people affected by HIV or HCV.

• Caledonia Youth Tel. 0131 229 3596 http://www.caledoniayouth.org/ Provides advice on sexual health and relationships to young people.

• Edinburgh Young Carers http://www.youngcarers.org.uk/index.php This project works with and on behalf of young carers in the Edinburgh area.

• Waverley Care - Children & Families Project Tel. 0131 558 1425 http://www.waverleycare.org/content/childrenandfamilies/120/ HIV support to children and young people affected by HIV. Includes one-to-one group work and play schemes.

Black and Minority Ethnic Services (BBV specific)

• The Minority Ethnic Health Inclusion Project (MEHIP) Springwell House Health Centre, Ardmillan Terrace, Edinburgh EH11 2JL Tel. 0131 537 7565 Has link workers who speak a variety of languages, including Arabic and Kurdish, Cantonese, Bengali, Urdu and Punjabi, and will help people link into primary health care services, as well as provide advice and information on support services in the community.

• African Health Project Tel. 0131 661 0982 or 07956613280 www.waverleycare.org/content/africanhealthproject/117/Lothian African Support Worker based at Waverley Care and also works in the community, provides emotional and practical support to individuals with HIV, and to professionals.

Carers of People with BBVs

• Edinburgh Community Healthcare Partnership www.nhslothian.scot.nhs.uk/Community/EdinburghCHP/ServicesSupportCarers/Pages/default.aspx

• Carers of East Lothian 149 North High Street, Musselburgh EH21 6AN Tel. 0131 665 0135 www.coel.org.uk

• Carers of West Lothian Strathbrock Partnership Centre 189a West Main Street, Broxburn EH52 5LH Tel. 01506 771750, Fax: 01506 858882 www.carers-westlothian.com/

• HIV-AIDS Carers & Family Service Provider Scotland 10 Elderpark Workspace, 100 Elderpark Street, Glasgow G51 3TR Tel. 0141 445 8797. Email: info@hiv-aids-carers.org.uk. http://www.hiv-aids-carers.org.uk/. Provide support and services to carers, families, partners and friends who have a loved one with HIV or AIDS.

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• VOCAL Carers Centre, 8-13 Johnston Terrace, Edinburgh, EH1 2PW Tel. 0131 622 7621 www.vocal.org.uk/ Voices of Carers Across Lothian supports carers living in Edinburgh and the Lothians.

Women

• Waverley Care Tel. 0131 558 1425 http://www.waverleycare.org/content/women/180/ Support for women with HIV or HCV with groups, peer-to-peer and advice.

PATIENT SUPPORT SERVICES – WEBSITES www.hivscotland.com HIV Scotland www.nat.org.uk National AIDS Trust www.positivenation.co.uk National HIV Magazine www.tht.org.uk/ Terence Higgins Trust – HIV / AIDS charity www.haemophilia.org.uk Haemophilia Society www.positivelyuk.org www.waverleycare.org Waverley Care Trust www.nhs.uk/livewell/hepatitisc NHS Living with hepatitis C site – helpline available www.hepctrust.org.uk/ National hepatitis C organisation – helpline available www.avert.org/ International AIDS charity, comprehensive information www.britishlivertrust.org.uk National charity – good information on viral hepatitis and all kinds of liver problems – helpline available www.nhs.uk/worthtalkingabout/Pages/sex-worth-talking-about.aspx/protection/condom-how-to-use NHS sexual health site – safer sex information NATIONAL HELPLINES

• British Liver Trust Open Mon-Fri, 9am-5pm

0800 652 7330

• Carers UK For those caring for people with diseases such as hepatitis C. The line is open on Mon-Fri, 10-12am and 2-4pm

0808 808 7777

• Haemophilia Society Mon-Fri, 9am-5pm

0800 018 6068

• HIV I-base For information and advice on HIV-related medication and treatment. Mon-Fri, 10am-5pm

0808 800 6013

• National African AIDS Helpline Mon-Fri, 10am-6pm

0800 0967 500

• Sexual Health Line 7 days a week, 24 hours a day

0800 22 44 88

• Scottish National Public HIV/AIDS Information Centre Mon and Fri, 11am-4pm; Tue-Thu, 11am-7pm

0131 661 0982

• Terrence Higgins Trust Direct (HIV/AIDS charity) Mon-Fri, 10am-8pm

0808 802 1221

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APPENDICES Appendix A: Clinical Indicator Diseases for Adult HIV Infection Appendix B: Risk Factor Classification – A Rough Guide Appendix C: List of Areas with Intermediate to High Sero-Prevalence Appendix D: Components of a BBV Risk Assessment Appendix E: Your Journey through Hepatitis C Care Appendix F: Safer Sex and Blood Borne Viruses (BBVs) Appendix G: Injecting Drug Use and Blood Borne Viruses Appendix H: HCV Testing Flowchart

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APPENDIX A: CLINICAL INDICATOR DISEASES FOR ADULT HIV INFECTION

AIDS-defining Conditions

Other conditions where HIV testing should be offered

Respiratory Tuberculosis Pneumocystis

Bacterial pneumonia Aspergillosis

Neurology Cerebral toxoplasmosis Primary cerebral

lymphoma Cryptococcal meningitis Progressive multifocal

leukoencephalopathy

Aseptic meningitis/encephalitis Cerebral abscesses Space occupying lesion of unknown

cause Guillain Barre syndrome Transverse myelitis Peripheral neuropathy Dementia Leukoencephalopathy

Dermatology Kaposi’s sarcoma Severe or recalcitrant seborrhoeic dermatitis Severe or recalcitrant psoriasis Multidermatomal of recurrent herpes

zoster

Gastroenterology Persistent cryptosporidiosis

Oral candidiasis Oral hairy leukoplakia Chronic diarrhoea of unknown cause Salmonella, shigella or campylobacter Hepatitis B infection Hepatitis C infection

Oncology Non-Hodgkin’s lymphoma

Anal cancer or anal intraepithelial dysplasia

Lung cancer Seminoma Head and neck cancer Hodgkin’s lymphoma Castleman’s Disease

Gynaecology Cervical cancer Vaginal intraepithelial neoplasia Cervical intraepithelial neoplasia

grade 2 or above

Haematology Any unexplained dyscrasia including: Thrombocytopenia Neutropenia Lymphopenia

Ophthalmology Cytomegalovirus retinitis

Infective retinal diseases including herpes viruses and toxoplasma

Any unexplained retinopathy

ENT Lymphadenopathy of unknown cause Chronic parotitis Lymphoepithelial parotid cysts

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Other

Mononucleus – like syndrome (primary HIV infection)

Pyrexia of unknown origin Any lymphadenopathy of unknown

cause Any sexually transmitted infection

Source: BASHH, BHIVA, and BIS (2008)

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APPENDIX B: RISK FACTOR CLASSIFICATION – A ROUGH GUIDE The following ‘BBV risk factor classification’ can be used as a rough guide to help assess the level of risk.

High Risk Unprotected sex (anal or vaginal) with a known HIV positive or chronically infected HBV person: • Past or current injecting drug use with ‘sharing’ of any

paraphernalia • Homosexual unprotected anal intercourse • African nationals and people from other areas of high

seroprevalence e.g. China, may have been exposed to BBVs • Recipients of blood or blood products pre-1985 screening, or

recipients of blood products in resource poor / developing countries • Unprotected sex with multiple partners.

Medium Risk Past or current injecting drug use with no reported sharing (often may not remember): • Unprotected sex with an injecting drug user • Unprotected sex with anyone from an area of high seroprevalence

(e.g. Africa, Asia) • Heterosexual anal intercourse • Homosexual protected anal intercourse.

Low Risk Frottage, mutual masturbation. Other risk factors: • Oral sex: increased risk associated with unprotected receptive oral

sex, having semen in the mouth, poor dental hygiene and upper respiratory tract infections, menstruation. HBV is more easily transmitted than HIV or HCV by this route

• Occupational accidents: such as needle-stick injury (can quantify this), bites.

Unknown Level of Risk

Blood sharing activities: • sharing sex toys, razors, toothbrushes, tattooing, body piercing,

acupuncture, electrolysis etc. Sharing ‘snorting’ equipment for drug use (no estimate of risk).

Note: blood transfusions, blood products and organ donations in the UK are screened for HIV, HBV, and HCV. However in other countries, particularly developing countries, the level of screening may be limited/non-existent so there is still a potential risk of transmission by these routes. Therefore when providing travel health advice this potential risk should be explained.

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APPENDIX C: LIST OF AREAS WITH INTERMEDIATE TO HIGH SERO-PREVALANCE

HIV HCV HBV

Sub-Saharan Africa Africa Africa

Asia Asia Asia (except Sri Lanka)

Eastern Europe Eastern Europe

Eastern Europe (all countries except Hungary), Greece, Italy, Malta, Portugal, Spain

Caribbean

South America: Brazil, Bolivia, Guyana

Caribbean: Antigua and Bermuda, Dominica, the Dominican Republic, Granada, Haiti, Jamaica, Puerto Rico, St Kitts and Nevis, St Lucia, St Vincent and Grenadines, Trinidad and Tobago, Turks and Caicos

South Pacific Islands (except non-indigenous populations of Australia and New Zealand)

The Arctic (indigenous populations)

South America: Argentina, Bolivia, Brazil, Ecuador, Guyana, Suriname, Venezuela, Peru and the Amazon regions of Columbia

Central America: Belize, Guatemala, Honduras, Panama

Middle East (except Cyprus)

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APPENDIX D: COMPONENTS OF A BBV RISK ASSESSMENT

General medical history

A history and dates of blood transfusions (including major trauma or surgery during which the patient may have been unaware of blood transfusion) • Tattoos (including where, when and whether done

professionally) • Country of birth and residence • Cultural practices (such as initiation ceremonies) • Family history • Immunisation history • Piercing and other body modification • Current baseline knowledge about HIV, STIs, hepatitis B

virus (HBV) and hepatitis C virus (HCV).

Drug (including alcohol) history checklist

Drug use (past and present) • Type of drugs used (prescription, alcohol and tobacco,

illegal) • The frequency of drug use • The duration of drug use • The most recent occasion of use • Routes of administration • Sharing of injecting equipment (including swabs, filters,

water, spoons etc.), or of any drug taking equipment such as straws / notes for snorting, or pipes for smoking

• Associated harms and evidence of dependence • Motivation to cease drug use or use non-injecting routes

of administration • Are you concerned about your drug use?

Important information to obtain about injecting drug use includes

• Whether and when any needles, syringes or other drug injecting equipment (such as swabs, water or filters) were shared

• The types of drugs injected • How often do you inject? • Do you inject alone, or with other people? • Do you know how to inject safely? Adapted from: ASHM (Bradford 2008)

Sexual History Recommended components of a basic sexual health history can be found on the NHS Lothian referral guidelines website. There are also guidelines for when and how to refer to sexual health services - see the hyperlink below this table. A basic sexual history should include: • Date of last sexual intercourse • Geographical location • Casual or regular partner • Partner’s gender • Partner’s nationality • Contraceptive method used if any

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• Details of condom use (Used efficiently? Put on before any penetration?)

• Nature of sexual activity (higher risk of transmission if blood involved)

• Other partners in the last 3 months • Sex outside the UK • previous STIs, BBV status and testing.

For guidelines for referral to sexual health services, see: http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view=article&id=895:sexual-health-services-home&catid=109:sexual-health-services&Itemid=1532 For guidelines for the management of sexually transmitted infections in primary care, see: http://www.bashh.org/BASHH/About_BASHH/BASHH_Publications/BASHH/About_BASHH/BASHH_Publications.aspx

APPENDIX E: YOUR JOURNEY THROUGH HEPATITIS C CARE If you started going to the hospital for your hepatitis C and missed some appointments you can be referred back again for treatment. Your doctor or nurse may discuss with you if you have any problems that make going for treatment difficult and help you to deal with these before referring you back to the clinic

You will be referred to the hospital out-patients clinic: a letter in the post will tell you about your first appointment.

You will be told about C-Plus and Waverley Care (contact details below) who can give you information, advice and support.

You may be asked to see other people to help you in your situation– these could be, for example: • A dietician – to help you with appetite and your weight

• A social worker – to help with housing, benefits, day to day care • A psychiatrist or Community Psychiatric Nurse – to help with low mood or depression.

Treatment can last for 6 -12 months depending on the type of hepatitis C you have. You will take tablets by mouth every day and weekly injections, which you can learn to give yourself.

You will go back to the clinic regularly for check-ups to see how your treatment is going. A few people may have treatment stopped early if the treatment is not working for them.

If you have any side effects, the clinic will be able to help with these.

At the end of treatment you need to go back after 6 months to make sure that the virus is still gone from your system and you are ‘cleared’.

Some people will still have the virus in their blood stream and will need to continue going to the clinic to keep an eye on their liver.

All the time before, during and after treatment, you must protect yourself against hepatitis C. Even after successful treatment you could catch hepatitis C again if you put yourself at risk.

If you have cleared the virus at your 6 month check you will be discharged from the clinic unless you have other damage to your liver.

If you have not cleared the virus or have signs of liver damage you will be offered ongoing checks to keep an eye on you and to discuss other treatments.

C-Plus or Waverley Care will be able to tell you about hepatitis C infection - how it can affect you, what you can do to help yourself and what treatment involves.

They can also help you get to clinic appointments and to get other support that you might need. Positive Help can provide transport to clinic appointments if you live in Edinburgh.

At the hospital you will see a specialist nurse or doctor who will take blood tests to check on your infection and how your liver is.

You will also be referred for scans of your liver. You will have several appointments to attend to make sure you are ready for treatment,

which may take a few months.

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APPENDIX F: SAFER SEX AND BLOOD BORNE VIRUSES (BBVs) LEAFLET See the next page for the leaflet The leaflet can be printed and given to patients.

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APPENDIX G: INJECTING DRUG USE AND BLOOD BORNE VIRUSES LEAFLET See the next page for the leaflet The leaflet can be printed and given to patients.

APPENDIX H: HCV TESTING FLOW CHART