Public Health Institute of Scotland

Clifton House,Clifton Place, Glasgow G3 7LSTelephone 0141 300 1010Fax 0141 300 1020www.phis.org.uk

ISBN: 1-904196-06-3

Needs Assessment Report

Rheumatoid arthritis in adults:Gaining health from effective treatmentDecember 2002

Public Health Institute of Scotland

AuthorsRon Gray, Specialist Registrarin Public Health, Department of Public Health,Glasgow University

Jill Muirie, Public HealthProject Manager, PublicHealth Institute of Scotland

Reference Group The reference group which informed thedevelopment of this report had broadprofessional and geographical representationfrom the health care and voluntary sectors.The membership of the group is detailed below:• Rosemary Blair, Trustee, Arthritis Care

Scotland• Hilary Capell, Consultant Rheumatologist,

Centre for Rheumatic Diseases, GlasgowRoyal Infirmary

• Michael Cornbleet, Senior Medical Officer,Scottish Executive

• Max Field, Senior Lecturer in rheumatology,Centre for Rheumatic Diseases, GlasgowRoyal Infirmary

• Fiona Gough, SeniorPhysiotherapist/Lecturer, Glasgow RoyalInfirmary/Glasgow Caledonian University

• Phil Hanlon, Director, Public Health Instituteof Scotland (Chair)

• Gillian Hosie, General Practitioner,Knightswood Medical Practice, Glasgow

• Colin Howie, Consultant OrthopaedicSurgeon, Edinburgh Royal Infirmary

• Robin Knill-Jones, Reader in Epidemiology,Glasgow University

• Rajan Madhok, Consultant Rheumatologist,Centre for Rheumatic Diseases, GlasgowRoyal Infirmary

• Lesley Manson, Senior OccupationalTherapist, Southern General Hospital,Glasgow

• Janet McCarlie, Clinical Epidemiologist,Public Health Department, Ayrshire andArran NHS Board

• Angela Donaldson, Policy and CampaignsManager, Arthritis Care in Scotland

• Alan MacDonald, ConsultantRheumatologist, Grampian UniversityHospitals Trust

• Euan McRorie, Consultant Rheumatologist,Western General Hospital, Edinburgh

• Sharon Pfleger, Consultant inPharmaceutical Public Health, Western Islesand Highland NHS Boards

• Thomas Pullar, Consultant Rheumatologist,Ninewells Hospital, Dundee

• David Reilly, Consultant Physician, GlasgowHomeopathic Hospital

• Norris Rennie, Consultant Rheumatologist,Aberdeen Royal Infirmary

• Malcolm Steven, Consultant Physician,Raigmore Hospital, Inverness

• Roger Sturrock, Professor, Centre forRheumatic Diseases, Glasgow Royal Infirmary

• Joy Tomlinson, Clinical Research Fellow,Department of General Practice, GlasgowUniversity.

AcknowledgementsThe group members wish toexpress their thanks to themany people who contributedto the report including thosewho took time to speak toRon Gray personally. These

individuals are named inAppendix 1 and included anumber of specialist nurses,rheumatologists, orthopaedicsurgeons, and primary careprofessionals from acrossScotland. Thanks are also due

to the many people whoprovided extensive andconstructive comments on thedraft report. The full list ofthose who responded is inAppendix 2.

NoteIt was initially consideredimportant to haverepresentation on the groupfrom nurse specialists.

However, after carefulconsideration it was decidedthat, given the range of waysof working in existence inScotland, it would be more

appropriate to meet andinterview a number of theseprofessionals in order that thedifferent patterns of workingcould be reflected.

• Rheumatoid arthritis is one of the majorchronic diseases in Scotland and affects anestimated 35,000 Scots, most of whomare over 45.

• Rheumatoid arthritis can cause considerabledisability and premature death.

• Though it is not curable, early andappropriate treatment can modify thedisease progression significantly andimprove the patient’s quality of life as aresult.

• Developments in the understanding andtreatment of rheumatoid arthritis meanthat better outcomes than at any time inthe past are now possible for those whohave access to effective care.

• This needs assessment reports builds onthe recently published ScottishIntercollegiate Guidelines Network (SIGN)guidelines on the early management ofrheumatoid arthritis by providing furtherinformation on how to plan and deliverservices for all rheumatoid arthritispatients.

• Current evidence strongly suggests thatbetter outcomes can be achieved through:– a structured proactive approach to

disease management– access to a well coordinated team of

skilled professionals– an informed, empowered patient

working as part of that team– accurate, early diagnosis and initiation

of appropriate treatment to reduceinflammation and damage

– prompt relief of pain and othersymptoms

– appropriate and timely interventions,including surgery, to minimise disabilityin established disease

– a focus on outcomes rather than process– adequate systems to measure, record

and evaluate outcomes.

• A checklist for local services has beendeveloped as part of this report, based onthe experience and knowledge of thereference group and others consulted.

• No one model of service provision isadvocated over another. The mostappropriate model will depend on localcircumstance. The key point is that anyservice should contain the essentialcomponents of effective services outlinedin this report, and be suitable andacceptable locally.

• The ‘Eight E’s’ below summarise the keythemes that arose during this needsassessment process and are the basicprinciples which should inform modernservices.

DEVELOPING SERVICES FORRHEUMATOID ARTHRITIS: THE 8 ‘E’s

Evidence based early treatmentExtended care approachEquityEstablished diseaseEmpowermentExerciseEducationEmployment

• There are ten recommendations in thisreport which cover: service commissioningand provision; quality standards; trainingand education; and improving informationand awareness. These should assist theevolution of services to ensure that, in thefuture, patients with rheumatoid arthritisin Scotland have an equal opportunity of agood outcome and are prevented fromthe type of disability that can result fromprogressive, untreated or poorly manageddisease.

Executive Summary

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Reference group and acknowledgements Executive Summary

ContentsChapter 1 Introduction 06Chapter 2 What is rheumatoid arthritis? 09Chapter 3 Reducing the impact of rheumatoid arthritis in Scotland 11Chapter 4 Improving services for people with rheumatoid arthritis 12

in Scotland: what needs to be done?Chapter 5 Checklist for local services 14Chapter 6 Training and education 19Chapter 7 Examples of possible models of care 20Chapter 8 Report recommendations 21

Glossary 23References 24

AppendicesAppendix 1 Acknowledgements 25Appendix 2 Consultation responses 26Appendix 3 The impact of rheumatoid arthritis on the Scottish population 27Appendix 4 What helps in rheumatoid arthritis? 30Appendix 5 Current services available to people with rheumatoid 38

arthritis in ScotlandAppendix 6 Health Technology Board for Scotland advice 43Appendix 7 What you should expect from your local services 44Appendix 8 The team approach to chronic disease 50Appendix 9 Classification criteria for rheumatoid arthritis 51Appendix 10 Rheumatology services in Scotland –some relevant statistics 52Appendix 11 Chronic disease management model 54

References 56

Contents

Continuing developments in theunderstanding, treatment and care ofpeople with rheumatoid arthritis (RA) meanthat better outcomes can be expected forthose who have access to effective care inthe early stage of their disease.

Translating advances achieved in scienceand clinical trials into everyday clinicalpractice in Scotland is the responsibility ofour 15 NHS Boards. However, many serviceplanners may be unclear how to provideappropriate services for RA to achieve thebest results for their local populations.Recently published guidelines (developed bythe Scottish Intercollegiate GuidelinesNetwork (SIGN)1) summarised the evidencefor improved outcomes and made specificrecommendations for the treatment of earlyRAi. The current report builds on theseguidelines by providing further informationon how to plan and deliver services for RApatients.

This report offers information to helpevaluate and plan local services to optimisehealth gain for people with RA. It providesan estimate of the number of new andexisting adults with RA in Scotland. It alsocontains a template for local services,

suggests ways to improve them andillustrates an evidence-based model of care.

We are concerned not only with the needsof newly diagnosed people with RA, but alsowith those patients with severe, establishedRA. This latter group remains important interms of service provision as these patientsrequire the greatest amount of professionalsupport and treatment.

From the outset it is important toacknowledge that the ultimate goal of RAservices must be to achieve the best healthoutcomes for RA patients. Presently,outcomes are poorly measured and one ofthe recommendations of this report is thatan expert working group considers whichmeasures, targets and performanceindicators should be adopted.

Implementation of the recommendations inthis report should assist the evolution ofservices to ensure that, in the future,patients with RA in all parts of Scotland havean equal opportunity of a good outcomeand are helped to avoid the type ofdisability that can result from progressive,untreated or poorly managed RA.

One.Introduction

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i The SIGN guidelines specifically address the treatment of early RA. The treatment of established disease and surgical management wereoutwith the remit and not covered.

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Treat early to minimise later disabilityThis picture illustrates the importance ofearly care and treatment in minimising thedevastating effects that RA can have. For thepatient opposite, delayed referral andtreatment have resulted in deformed,painful, misshapen hands with reducedfunction. The picture below illustrates how,with early referral and early treatment, theinflammation has been controlled and thereare fewer problems other than someswelling and stiffness.

Whilst we would not wish tounderestimate the devastating effect thatRA can have on some people, advances inits treatment mean that we should expectbetter outcomes for those newlydiagnosed with the disease. Though agood outcome depends on many factorsand cannot be guaranteed, the outlook isbetter than at any time in the past. Infact, with treatment started soon afterdiagnosis, there is real hope of anindependent life for many people. Inother words, RA should not result in lowexpectations by patients or practitionersand, in most cases, it should notadversely impact on an otherwise activelife. Even in those with establisheddisease, joint replacement can minimisedisability and help maintain or restoreindependence.

These developments have led to a growingsense of optimism and increasingexpectations from patients andprofessionals in the field of rheumatology.Disappointingly, the public generally, somehealth professionals and many serviceplanners remain unaware of the potentialimprovements in pain relief, function andoutcome that can be achieved. Services inScotland are therefore not consistentlydelivering the optimum level of care.

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RA THEN

Case study 1Seventy years ago doctors weren’t able to stop RAdamaging people’s joints.

Mrs McCallum’s joints were swollen and painfuland she relied on her family to help her in day today activities.

Most people with RA were unable to work and hadproblems walking.

RA NOW

Case study 2When Liz started to have pains in her hands, sheremembered how her gran had been affected.

When she found out she had RA she was reallyworried she might lose her job.

Case study 3Jane was diagnosed with RA 2 years ago. Sheobtained good general control of the disease withmodern drug therapy.

However, despite aggressive treatment shedeveloped a painful right hip which limited herduring normal activities of daily living (walking,sleeping, dressing, etc.) See above left for anexample of a collapsing right hip.

The following case histories areincluded to illustrate howadvances in treatment over thelast 30 years have improved theoutlook for patients with RA.

TreatmentWhen Mrs McCallum first had painful joints, her teethwere extracted to see if that would help! It didn’t.

Next, hot baths and aspirin were advised but thatdidn’t stop the joints being damaged either.

Gradually, she could do less and less.

TreatmentModern treatments for RA work by reducing theinflammation. For Liz, like most people, it took sometime for the treatment to work.

Rheumatoid arthritis hasn’t seriously damagedher joints.

This type of response can be achieved with mostpatients presenting with rheumatoid disease.

A whole team of people saw Liz when she went tothe specialist clinic. They helped her find the best wayfor her to manage things while her joints were sore.

TreatmentA number of professionals worked together withJane to ensure that she received prompt treatmentto improve her quality of life and minimise her pain.

Following a hip replacement she returned to fullactivities and was able to care for her young familywithout pain or disability within 6 weeks. (seeabove right: total hip replacement)

She continues to maintain general disease controlon her drug therapy.

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Rheumatoid arthritis (RA) is amongst themost common, potentially treatable causesof disability in the Western World. It is oneof the major chronic diseases and affectsup to 35,000 people in Scotland. At leastone person on your street is likely to beaffected. Rheumatoid arthritis can causeconsiderable disability and prematuredeath. Though it is not curable, early andappropriate treatment modifies the diseaseprogression significantly, and improves thepatient’s quality of life as a result.Appendix 3 contains more information onthe impact of RA on the population andAppendix 4 has details on the treatmentsavailable for RA.

Rheumatoid arthritis can have a profoundeffect on day-to-day life. The symptoms ofpain and stiffness in joints mean that eventhe most basic of activities of daily living(such as washing, dressing and housework)may be affected. These problems can leadto uncertainty or hopelessness about thefuture and may result in loss ofemployment, low self-esteem, depressionand disempowerment.

The exact cause of RA is not yet known.What is known is that the body's immunesystem seems to turn against itself(autoimmunity) leading to inflammation.The main sites affected are the thin layers oftissue (synovial membranes) lining the insideof the joints and around the tendons. Themain features of arthritis (pain, stiffness andswelling) are due to the inflamed joints. Thedisease typically affects the small joints of thehands and feet and the resulting loss offunction can be severely debilitating. However,the most serious disability is associated withdisease affecting the large weight-bearingjoints, such as the knee and ankle.

Early treatment minimises loss of cartilage,erosion of bone and tendon damage but ifleft untreated, the disease takes aprogressive course. Over a number of yearsmore joints become affected leading tomore severe disease. The rate of progressionvaries. In some people the condition may bemild and have periods of remission, but inmany people it progresses rapidly.

There has been a lot of progress in recentyears in the understanding of RA andappropriate care and treatments. Mosttreatment will involve medications tosuppress disease activity and in some casessurgical procedures will be necessary. Earlytreatment with disease-modifying drugs canimprove the outlook considerably, even forthose worst affected. Appendix 4 has moredetail on the effectiveness of the maintreatment methods. The evidence stronglysuggests that better outcomes can beachieved by:• a structured proactive approach to disease

management • access to a well coordinated team of

skilled professionals• an informed, empowered patient working

as part of that team• accurate, early diagnosis, initiation and

maintenance of appropriate treatment toreduce inflammation and damage

• prompt relief of pain and other symptoms • appropriate and timely interventions,

including surgery, to minimise disability inestablished disease

• a focus on outcomes rather than process• adequate systems to measure, record and

evaluate outcome.

Although RA mainly affects the joints, it caninvolve other tissues and organs. This isknown as rheumatoid disease and tends to

Two.What is rheumatoid arthritis?

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occur in people with long standing RA.Patients with rheumatoid disease presentwith complications which require input fromother specialists as they may have diseaseaffecting the eyes, lungs, heart, skin, kidneysor other tissues.

The majority of people with RA in Scotlandare over 45 years old and therefore faceadditional problems of aging such as co-existing chronic diseases (for example,hypertension, diabetes) in addition to theirRA. Many, however, are also of working ageand so are particularly concerned about theimpact of the condition on theiremployment status.

Recently an association with increasedmortality from coronary heart disease (CHD)has been noted in patients with RA.Therefore, aerobic exercise programmes willalso benefit RA patients in terms of anumber of outcomes associated withcardiovascular health2.

The majority of people with RA in Scotlandare over 45 years old and therefore faceadditional problems of aging

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We have estimated that up to 35,000people in Scotland have RA. However, RAdoes not only affect those with the illness. Ithas a major impact on their partners,children, family and sometimes their closefriends, neighbours and work colleagues. Forevery person with the illness there may be anumber of others affected indirectly,meaning that RA impacts on a considerablylarger number of people than those with the illness.

The estimated 35,000 people with RA couldfill a large football stadium. If we lookedround that stadium we would see that

about two thirds of these people are femaleand most are in middle to late life3,ii.

The case studies on page 8 illustrate howdevelopments in care and treatment haveimproved the outcome for patients with RA.Twenty years ago more than half of thosewith the disease would have been unable tocontinue in employment compared to lessthan a third now.

Similarly, around a third would have beenseverely disabled compared to only about asixth of RA patients todayiii.

Three.Reducing the impact of rheumatoidarthritis in Scotland

The estimated 35,000 people with RA couldfill a large football stadium.

ii There would also be a few children and young adults. However, juvenile RA is a highly specialised area and will not be dealt with in thisneeds assessment document.

iii This popularisation is based on Capell et al6, Young et al.7,and Jacoby et al8.

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Four.Improving services for people withrheumatoid arthritis in Scotland:what needs to be done?

Based on our knowledge of the evidencebase for interventions in RA we can predictthat current services will be effective in sofar as they:• allow for early diagnosis and treatment by

a rheumatologist• have a well-developed multidisciplinary

team approach• aim for good control of disease• are responsive enough to accommodate a

whole spectrum of need• have close liaison with, and prompt access

to, orthopaedic services from a surgeonwith an interest in RA

• collaborate with, rather than ‘process’, thepatient

• are focussed on patient outcomes andimproving these outcomes

• acknowledge the importance of primarycare in chronic disease management.

Scope for improvement in currentservices Existing services in Scotland have evolvedfrom historical patterns of provisiondeveloped in the light of experience ofdelivering these services. Increasinglyattempts are being made to translate thegrowing evidence base into practice on theground, delivered equitably across Scotland.However, there is still scope forimprovement. Current services are describedin more detail in Appendix 5.

Problems with existing services include thefollowing:• there is an insufficient knowledge and

skills base amongst many professionals

• secondary care currently carries out manyfunctions which might be better suited toprimary care (e.g. some routinemonitoring)

• there is poor coordination and integrationbetween primary and secondary care

• waiting times are seen as a secondary careissue rather than a whole system problem

• current services are not as patient-centredas some patients would like

• services are often more focussed onprocess than outcome

• services are not consistently integratedwith patient self-management

• each surgical episode is treated as a newepisode for waiting list purposes

• standards of care vary throughoutScotland.

These problems are compounded by thefact that not only the public, but also somehealth professionals and many planners andpolicy makers, are poorly informed about RAand what can be done to improve thepatient journey and health outcomes.

The way forwardEight key themes arose in the developmentof this needs assessment report. These areencapsulated in ‘Developing services forrheumatoid arthritis: the 8 ‘E’s’.(see Box Aopposite). These can be seen as the basicprinciples which should inform modernservices for RA in Scotland. They are allnecessary and are, to a large extent,interdependent.

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EVIDENCE BASED EARLY TREATMENT• SIGN guidelines 1

• Cultural shift – earlier assessment byrheumatologist- earlier introduction of disease-modifying

anti-rheumatic drugs (DMARDs)- raised awareness and expectations

EXTENDED CARE APPROACH• Using the multidisciplinary approach• Extending the use of nurses and allied

health professionals (AHPs)• Focus on outcomes supported by high

quality information systems

EQUITY• Access, flexibility and choice• Geographical consistency• Economics

- Health Technology Board for Scotland(HTBS) advice (and National Institute forClinical Excellence (NICE) guidance)iv

- Scottish Medicines Committee (SMC)guidance

ESTABLISHED DISEASE• Surgical intervention• Patients whose disease responds poorly or

not at all to treatment• Use of newer (‘biological’) drugs

EMPOWERMENT• Self-management programmes including

empowerment training• Holistic model of care centred on the

‘expert’ patient• Therapeutic alliance

EXERCISE• Changing culture• Changing expectations• Promoting health

EDUCATION • Education of people with RA• Education of the public about RA and the

needs of people with RA• Educating employers• Training and education of health

professionals

EMPLOYMENT• Advice and retraining schemes• Supported employment programmes• Sensitive flexible employers

BOX A Developing services for rheumatoid arthritis: the 8 ‘E’s

iv See Appendix 6

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In each NHS Board area there needs to beuniversal access to a comprehensive servicefor people with RA. In some areas ofScotland this may require joint planning ofservices between NHS Boards to deal withissues such as geographical remoteness andcross boundary flows.

Based on the experience and knowledge ofmembers of the reference group andinformation obtained from a variety ofother sourcesv, including a comprehensivereview of the existing literature, a checklistfor local services has been drawn up and isdetailed below.

Due to differences in geography, resourcesand organisational structures of NHS Boardareas in Scotland, this checklist should beconsidered as a guide on which to baselocal discussions about local servicedevelopment, rather than as an audit tool.

In addition, consideration should be givento the development of a Managed ClinicalNetwork (MCN) for RA. Such an approachwould support the development of acommon database and the sharing ofinformation and good practice betweendisciplines, primary and secondary servicesand geographical areas.

Appendix 7 provides more information aboutwhat patients with RA should expect fromlocal services.

In General

1 A multidisciplinary team of professionals,which includes appropriate allied healthprofessionals (AHPs) and which hasadequate clerical support, is essential forthe delivery of an efficient, effective andtimely service to RA patients. All patientsshould have access to such a team. (Theteam approach to chronic disease isexplained further in Appendix 8).

2 People with RA should be regarded askey players in producing health gainboth at an individual and service level.This means that people with RA should:• feel empowered in their contact with

local services• have a major input to the commissioning

and development of local services.

3 People with recently diagnosed RAshould be offered:• user-led self-management courses • information on RA in primary and

secondary care• relevant information on local services.

4 Relevant Health Technology Board forScotland (HTBS) and Scottish MedicinesCommittee (SMC) advice should beconsidered when planning local servicesvi.

5 Pain management should be an integralpart of the treatment process for patientswith newly diagnosed RA and for thosewith established disease. (Pain may be

Five.Checklist for local services

v This section draws on specific advice from members of the reference group as well as:• The British League against Rheumatism – Standards of Care for Osteoarthritis and Rheumatoid Arthritis• British Society for Rheumatology published advice on service planning

vi HTBS Comment on NICE Guidance No 27 on the use of cyclo-oxygenase (Cox II selective inhibitors) for osteoarthritis and rheumatoidarthritis, and HTBS Comment on NICE Guidance No 36 on the use of etanercept and infliximab for the treatment of RA. (see Appendix 6) .The SMC issues guidance at the point of licensing of new drugs.

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multifactorial and has to be addressedon a multidisciplinary basis).

6 Access for physically disabled people andappropriate facilities for car parkingshould be available in all servicesattended by people with RA.

7 Up to date knowledge of the range oftherapeutic options, including surgery,should be included in training, andcontinuing professional development forall members of the multidisciplinary team.

8 There should be regular educationalevents and opportunities for primaryand secondary care professionals tomake each other aware ofdevelopments.

9 The facilities for patient examination,combined clinics, patient andprofessional education, and technicalprocedures such as joint injections,should be considered adequate or betterby professionals and service users.

10 The management infrastructure should beadequate. In particular there should be:• dedicated secretarial and clerical support.• telephone, fax and email facilities.

Early rheumatoid arthritis

11 The SIGN guidelines on themanagement of early RA1 should beimplemented – and in particular theguideline relating to early referral whichstates that patients should be seen by arheumatologist within twelve weeks of

the onset of symptoms. (Appendix 9gives more detail on the classificationcriteria for RA).

Information

12 There should be a comprehensiveregister of patients in each NHS Boardarea. It should allow linking of databetween primary and secondary careand enable comparisons across NHSBoard areas. This will require core datato be collected in all areas. In addition,the register should contain informationon outcome, particularly patient centredoutcomes, and be designed to enable: • clinical auditvii

• patient recall• monitoring of individual care plans• service planning• improved resource allocation and

planning.

Primary care

13 Each local health care cooperative(LHCC) should recognise RA as aclinical priority and appoint a leadperson for coordinating RA serviceslocally. This person’s brief would beadministrative rather than clinical andwould be likely to include thefollowing: • acting as administrator for a local

managed clinical network (MCN)• arranging locally agreed protocols and

clinical guidelines• assessing local needs in the light of this

document• monitoring waiting times within their LHCC

vii HTBS Comments and the corresponding NICE guidance have specific criteria for audit (See Appendix 6). Appendix F of the NICE Guidanceon the use of etanercept and infliximab provides a detailed list of suggestions for audit.

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• informing local decisions about referralpathways.

Where LHCCs are small there may be acase for having a lead person for a groupof LHCCs.

14 General practitioners (GPs) should beaware of the need for early diagnosis andearly referral to secondary care forconfirmation of diagnosis, earlyassessment and initiation of disease-modifying anti-rheumatic drug (DMARD)therapy as appropriate. Patientssuspected of having RA should be seenby a rheumatologist within twelve weeksof the onset of symptoms.1

15 Patients should be able to access,through the primary care team andwithout delay, the wide range ofcommunity support services required(including physiotherapy andoccupational therapy).

16 A major role of primary care services forRA, as for any other chronic disease, is forpsychosocial support and management.

17 General practitioners and communitypharmacists should counsel patients topromote concordance with prescribedmedicine and self-management of theircondition.

18 Community pharmacists should checkthat patients are aware they should seeka pharmacist’s advice before purchasing

any over-the-counter medicines whichmight interact with prescribed medicines.

19 Since regular, moderate physical activityreduces the risk of developing CHD,patients should be encouraged and givensupport and advice to increase theiractivity levels2;4;5. Physiotherapists have animportant role in the development ofaerobic exercise programmes (which mayinclude staff training) and, whereappropriate, have an advisory role inservice delivery.viii

Rheumatology services

20 All patients referred by their GP withsuspected RA should be assessed by arheumatologist. The rheumatologist and,where appropriate, the multidisciplinaryteam should then formulate a managementplan agreed with the patient.

21 Patients started on DMARD therapyshould be regularly reviewed in secondarycare, as part of a shared care programme,with the GP usually monitoring drug sideeffects and the rheumatologist monitoringresponse to therapy.

22 There should be establishedmultidisciplinary care with appropriatestaffing. Clinical nurse specialists inrheumatology and AHPs are considered tobe integral to well-managed, high qualityclinical care. The numbers of theseprofessionals should therefore beexpanded.

viii The Physical Activity Task Force in Scotland recently published their consultation document. In it they outline a broad framework ofobjectives and priorities for developing physical activity in Scotland, which strongly support the recommendations about physical activitymade in this needs assessment. It describes the vision, goals, strategic objectives and priorities and seeks comments on whether theproposed national and local infrastructure is appropriate for the development of further action plans. See: ‘Let's Make Scotland MoreActive’. A strategy for physical activity – a consultation. Physical Activity Task Force. June 2002. Edinburgh: HMSO. Available athttp://www.show.scot.nhs.uk/sehd/patf/

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23 Workforce requirements may varyaccording to local models of service, localneed and geographical variability. Forthese reasons for most healthprofessions it is currently not possible tostipulate an ideal number of staff perhead of population. However, localservice planners should be aware ofguidance published by professionalbodies. A range of suggested figuresbased on expert opinion have beenpublished (see Appendix 10) but theBritish Society for Rheumatology (BSR)recommend one whole time equivalentrheumatologist for every 85,000population. The Senate of Surgery ofthe UK and Ireland recommends onewhole time equivalent orthopaedicsurgeon per 30,000 populationix.Service planners should be aiming forthe recommended ratios, but in theshort term there will be practicalproblems in achieving these. The mostimportant point is that there should beestablished multidisciplinary care withstaffing levels considered appropriate tomeet the needs of patients locally byprofessionals working in the area.

24 There should be effective and closecollaboration with orthopaedicsurgeons. Where surgery is coordinatedby a rheumatologist, regular meetingsshould take place with surgicalcolleagues to discuss clinical casesx.

25 Adequate inpatientxi and day patientfacilities should be provided. Theseunits should be staffed by a

multidisciplinary team with specific skillsand experiences of caring forrheumatoid patients, some of whomwill be critically ill. Such units shouldact as a focus for severely affectedpatients who may require repeatedtreatments.

26 Facilities for injections into joints (orsoft-tissues) should be available in bothsecondary and primary care. Only thosewith appropriate training andexperience should give these injections,and should do so in an appropriate,clean environment.

27 Safe, supervised aerobic activityprogrammes, tailored to suit individualneeds and preferences, should beavailable for RA patients. Theseprogrammes should link withcommunity leisure services and GPExercise Referral schemes. State-registered physiotherapists should havea role in the development and provisionof such programmes and, whereappropriate, be involved in the trainingof community service personnel.

28 All professionals should have access toup to date copies of the mainrheumatology textbooks, majorprofessional journals and an on-linelibrary with access to clinical databasesand electronic journals.

29 Units should engage in regular audit andmost should participate in clinicalresearch.

ix Senate of Surgery of the UK and Ireland document, Consultant Surgeon Practice and Training in the United Kingdom June 1997. AdvisoryHandbook on Consultant and Trauma Services. British Orthopaedic Assoc 1999.

x Ideally this should happen fortnightlyxi Ideally within a designated rheumatology ward or a general ward with designated rheumatology beds.

Orthopaedic surgery

30 Local orthopaedic surgical servicesshould include a surgeon with a sub-specialty interest in RA, and withaccess to a clinical network whichensures that cases requiring unusual orcomplex surgery (e.g. ankle, elbow, orneck surgery) receive adequate care.

31 There should be effective and closecollaboration between orthopaedicsurgeons and rheumatology services. Theway of doing this may vary according tolocal circumstances, but may include amultidisciplinary assessment whichincorporates surgical and functionalpriorities for surgery and patients’potential to comply with post-operativetherapy.

32 The waiting time from initial referral byan experienced member of the team,when joint replacement may beconsidered, to actual surgery for patientswith RA should be as short as possibleand compatible with clinical need.Ideally it would be no more than eightweeks.

33 Surgery should be coordinated by asurgeon with specialist training, or arheumatologist who meets regularly withhis or her surgical colleagues to discussclinical casesxii.

34 As outlined in point 23 above, workforcerequirements may vary according tolocal models of service, local need andgeographical variability. However, local

service planners should be aware ofguidance published by professionalbodies and be working towards these.

35 Patients with multi-joint disease requiringcomplex reconstruction should have theirsurgery regarded as a series of plannedlinked therapies and not as separateepisodes for waiting list purposes.

36 Access to surgical services should bemonitored to ensure availability andtimely access.

Services for other rheumatologicalconditions

37 In some parts of Scotland, specialistrheumatology services have hadinappropriate referrals for soft tissueconditions and osteoarthritis on a routinebasis. This has led to longer waiting listsfor secondary care. To minimise this,adequate provision in primary care shouldexist for the treatment of all but the mostsevere cases of soft tissue conditions andosteoarthritis. Physiotherapists andcommunity pharmacists can play a majorrole and should be easily accessible to theprimary care team. Pain managementmust also be routinely available and anintegral part of the care package.

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xii Ideally this should happen fortnightly.

19

Training and education for front line healthprofessionals is important for a number ofreasons:• consultations related to musculoskeletal

disorders make up a high proportion ofGP caseloads

• early referral, diagnosis and treatment arevital for maximising patient outcome

• all members of the health care team needto have sufficient and up to dateknowledge in the care and treatment ofRA to deliver optimum patient care. Forexample, in order that patients haveaccess to injections into joints or softtissues in both primary and secondarycare, relevant training should be mademore widely available

• shared care is widely accepted as bestpractice but to be effective, it requires thepresence of adequate knowledge andresources in primary care

• the development of new clinical roles(such as specialist health professionals(nurses or therapists)) brings the potentialfor important improvements in patientcare, but also a requirement forappropriate training

• good undergraduate and postgraduate education of AHPs and medical

undergraduates and postgraduates is vitalto help increase understanding about themanagement of RA and other rheumaticdiseases. In addition, it can help toincrease the importance that this group ofconditions is given by the professions.

It is recognised that there is a need toincrease the number of specialistrheumatologists and orthopaedic surgeonsin Scotland. However this will take sometime, as more doctors will be required toembark on training in this field. Therefore,pragmatic developments are required toaddress current service needs and theseshould include imaginative educationprogrammes designed to encourage andimprove multidisciplinary working. Forexample, in a rural area with a relativelysmall population, the involvement of GPstrained in rheumatology might help toprovide a more effective service.

In addition, there is a need for increasedtraining opportunities for specialist healthprofessionals, yet there is little fundingavailable for relevant specialist courses and alack of availability of such training inScotland.

Six.Training and education

The reference group considered a numberof service delivery models for rheumatoidarthritis care. It was deemed inappropriateto recommend any one model although the‘chronic disease management model’ hadsignificant support.

This model, which is being considered insome areas and which has a strong evidencebase, has been successfully used for anumber of chronic conditions such asdiabetes, coronary heart disease anddepression. Although there are no currentworking examples of this model specificallyfor RA, some details of the components ofthe model are outlined in Appendix 11.

The model currently adopted by mostservices in Scotland is a ‘shared care’ model,where primary and secondary care serviceswork together to provide the patient withoptimum care.

The choice of service models will depend toa great extent on local circumstance andshould be agreed by all local partners. Thekey point is that any service should containthe essential ingredients of effective services.

These are outlined in Chapter 4 andsummarised again below.

Services should:• allow for early diagnosis and treatment by

a rheumatologist• have a well-developed multidisciplinary

team approach• aim for good control of disease• be responsive enough to accommodate a

whole spectrum of need• have close liaison with, and prompt access

to, orthopaedic services from a surgeonwith an interest in RA

• collaborate with, rather than ‘process’, thepatient

• be focused on patient outcomes andimproving these outcomes

• acknowledge the importance of primarycare in chronic disease management.

Seven.Examples of possible models of care

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21

The recommendations below are based on‘Developing services for rheumatoid arthritis:the 8 ‘E’s’ outlined in Box A on page 13.

1. Service commissioning and provision

a. Each NHS Board planning orcommissioning department shouldprovide resources for a designated leadperson to bring together relevant localstakeholders in RA service provision (seeAppendix 8: The team approach) as aplanning and implementation group forlocal RA services. This should includepatient representation. Links should alsobe established with the Board’s publichealth department. These planning andimplementation groups should includethe following as part of their core remit.

i Identification of the strengths andweaknesses in local services using thechecklist provided in this report (seeChapter 5).

ii Consideration of local prevalence andstaffing numbers for all relevanthealth professionals, comparing withnational guidance (where it existsxiii),and the addressing of any shortfalls.

iii Ensuring that there is appropriate andequitable access to services andtreatments for all patients with RA.

iv Reviewing the services provided forpeople with established disease (as theexisting SIGN guidelines largely dealwith acute and newly presenting cases).

v Taking account of advice andevidence from HTBS onrecommended drugs or treatments(see Appendix 6).

vi Ensuring the availability of good

quality information for the planning,delivery and monitoring of effectivelocal services. Information systemsshould include:• a local register of adults with RA.

This register should includenationally agreed measures andindicators as a core, to permit areacomparisonxiv

• standards of care (includingoutcome measurements e.g. bypatient derived disability anddependency scores, quality of lifequestionnaire, and mortality in theyears following diagnosis)

• systems of recall• means to share clinical information

electronically between primary andsecondary care.

The data collected by theseinformation systems should beaudited regularly to allow foridentification of weaknesses in thesystem and continuous qualityimprovement (and particularlyimprovement in patient outcomes).

b. NHS Boards, such as those in the northand west of Scotland and the islandboards, should consider planning servicesjointly to deal with the issues ofgeographical remoteness and crossboundary flows. This might be done bythe establishment of regional managedclinical networks (MCNs).

c. When the current SIGN guideline on earlymanagement of RA is reviewed SIGN shouldbe requested to consider widening the scopeof the current guideline, or developing a new

Eight.Report recommendations

xiii See Appendix 9.xiv This should observe standard procedures about consent, confidentiality and data protection.

guideline, to cover the management ofestablished disease, including surgicalmanagement.

d. The needs of the minority of patients withprogressive disease should be dealt withpromptly and as fully as newly diagnosedpatients. Each service should offercomprehensive care (involving themultidisciplinary team) to ensureappropriate and cost-effective care forthese, the most disadvantaged patients.

2. Quality Standards

a. NHSScotland Quality Improvement shouldbe invited to formalise standards for RAservices (the SIGN guidelines and thisneeds assessment report may be useful ininforming this process).

b. Information systems should be adopted ineach NHS Board area (seerecommendation 1a(vi) above) whichallow for comparisons across areas. Thiswould mean the development of a nationaldataset. It is therefore recommended thatappropriate outcome measures targets andperformance indicators are considered andidentified by the Scottish Society forRheumatology in consultation with theRheumatoid Arthritis Surgical Society andthe relevant voluntary organisations. Theseshould be incorporated into local NHSBoard information systems in order toallow comparison across NHS Board areas.

3. Training and education

a. Improving training and education forfront line health professionals is crucial todelivering better quality services. It is

therefore recommended that theScottish Society for Rheumatology andthe Rheumatoid Arthritis Surgical Societyshould work together with relevantRoyal Colleges, patient organisationsand other bodies, including NHSEducation Scotland (NES), to developplans to deliver improved training for allrelevant disciplines. This may includemultidisciplinary or multi-agencytraining or training delivered by peoplewith RA themselves.

4. Improving information and awareness

a. Those organisations working in thevoluntary sector on RA issues should worktogether to raise awareness amongst thepublic and employers, in both the publicand private sectors, of the importance ofearly treatment and access to surgery, aswell as the needs of people with RA moregenerally.

b. Voluntary organisations should link withthe Physical Activity Task Force in Scotlandto raise awareness, improve access anddevelop systems to promote physicalactivity and mobility in RA patients.

c. The Scottish Society for Rheumatology(SSR) and relevant voluntary organisationsshould work together to develop balancedinformation for newly diagnosed RApatients and for primary careprofessionals. This information shouldcover the risks and benefits of diseasemodifying drugs and the availability andvalue of aids and appliances. Thisinformation should also provide details ofsupport and voluntary services and reflectlocal circumstances and provision.

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23

AHPs Allied health professionalsARA American Rheumatism SocietyBSR British Society of RheumatologyCAM Complementary and alternative medicineCMR Continuous morbidity recordingCRAG Clinical Resource and Audit GroupDMARD Disease-modifying anti-rheumatic drugsGHH Glasgow Homeopathic HospitalGPs General practitionersHTBS Health Technology Board for ScotlandISD Information and Statistics DivisionLHCC Local health care cooperativeMCN Managed Clinical NetworkNES NHS Education ScotlandNICE National Institute for Clinical ExcellenceNOAR Norfolk Arthritis RegisterNSAID Non-steroid anti-inflammatory drugsRA Rheumatoid arthritisRASS Rheumatoid Arthritis Surgical SocietySIGN Scottish Intercollegiate Guidelines NetworkSSR Scottish Society for Rheumatology TNF Tumour necrosis factor

Glossary

1. Scottish Intercollegiate Guidelines Network. Management of early rheumatoid arthritis.48. 2001.

2. Scottish Intercollegiate Guidelines Network. Cardiac Rehabilitation. 2002.

3. Symmons, D. 2002. Personal Communication

4. Anonymous. Physical activity and cardiovascular health. NIH Consensus DevelopmentPanel on Physical Activity and Cardiovascular Health. JAMA 1996; 276 : 241-246.

5. Pate RR, Pratt M, Blair SN, et al. Physical activity and public health. A recommendationfrom the Centers for Disease Control and Prevention and the American College of SportsMedicine. JAMA 1995; 273: 402-407.

6. Capell HA, McCarey D, Madhok R, Hampson R. 5’D’s Outcome in 52 RA patients 20years after initial disease modifying anti-rheumatic drugs. Journal of Rheumatology 2002;(In Press)

7. Young A, Dixey J, Cox N, et al. How does functional disability in early rheumatoidarthritis (RA) affect patients and their lives? Results of 5 years of follow-up in 732 patientsfrom the Early RA Study (ERAS) Rheumatology 2000; 39 : 603-611.

8. Jacoby RK, Jayson MI, Cosh JA. Onset, early stages, and prognosis of rheumatoid arthritis:a clinical study of 100 patients with 11-year follow-up. BMJ 1973; 2: 96-100.

References

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25

• Matthew Armstrong, Statistician, Information and Statistics Division, Common Services Agency.

• Adam Bryson, Medical Director, National Statistics Division,Common Services Agency.

• Lyndsay Burley, Chief Executive, Borders NHS Board.• Neil Craig, Lecturer in Health Economics, University of Glasgow.• Lyndsay Harkins, Statistician, Information and Statistics Division,

Common Services Agency. • John Hunter, Consultant Rheumatologist, Gartnavel General Hospital, Glasgow.• Rachel Logie, Health Economist, Arthritis Research Council Epidemiology Research Unit,

School of Epidemiology & Health Sciences, University of Manchester.• Alison Low, Rheumatology Specialist Nurse, Woolmanhill Rheumatology Clinic, Aberdeen.• Darryl McGhee, Rheumatology Specialist Nurse, Southern General Hospital, Glasgow.• Fiona McGhie, Nurse Specialist in Rheumatology, Raigmore Hospital, Inverness.• Fraser McLeod, General Practitioner, Glasgow.• Robert Miller, LHCC Manager, Glasgow.• Caroline Morrison, Consultant in Public Health Medicine, Greater Glasgow NHS Board.• Stan Murray, Consultant in Public Health Medicine, Greater Glasgow NHS Board.• Duncan Porter, Consultant Rheumatologist, Gartnavel General Hospital, Glasgow.• David Reid, Professor of Rheumatology, University of Aberdeen.• Catriona Renfrew, Director of Planning and Community Care,

Greater Glasgow NHS Board.• Joan Roberts, Rheumatology Liaison Sister, Gartnavel General Hospital, Glasgow.• Deborah Symmons, Professor of Rheumatology and Musculoskeletal Epidemiology,

Arthritis Research Council Epidemiology Research Unit, School of Epidemiology & HealthSciences, University of Manchester.

• Wilma Waugh, Rheumatology Specialist Nurse, Woolmanhill Rheumatology Clinic,Aberdeen.

Appendix one.Acknowledgements

The following people provided valuable information for this needsassessment through discussions with Ron Gray.

Appendix two.Consultation responses

26

Dr Robin Munro Consultant Rheumatologist Wishaw General HospitalDr Asad Zoma Consultant Rheumatologist Wishaw General HospitalDr Elizabeth Murphy Consultant Rheumatologist Wishaw General HospitalDr Eric Baijal Director of Public Health NHS GrampianDr Marion Bain Consultant in Public Health Medicine ISDDr Jenny Bennison Honorary Secretary Royal College of General PractitionersMs Ailsa Bosworth National Rheumatoid Arthritis SocietyDr Maciejz Brzeski Rheumatology Consultant Forth Valley Acute Hospitals NHS TrustDr Lindsay Burley Chief Executive Borders NHS BoardDr H Capell Consultant Rheumatologist North Glasgow University Hospitals NHS TrustDr Harden Carter Consultant in Public Health Medicine Lothian NHS BoardMs Tina Chapman Head of OT Service Fife Acute Hospitals NHS TrustDr G Davies Medical Director Forth Valley Primary Care NHS TrustMs Patricia Dawson Head of Policy Royal College of NursingMs Jennifer Duthie Lecturer The Robert Gordon University Dr Clifford Eastmond Consultant Rheumatologist Grampian University Hospitals TrustMs Ruth Gray Acting Deputy Head Occupational Therapy ServiceMr Colin Hewie Lothian University Hospitals TrustDr Aileen Keel Deputy Chief Medical Officer Scottish Executive Health DepartmentDr Harpreet S Kohli Medical Director Health Technology Board For ScotlandMs Lesley Lockhart Team Leader Fellowship Support UnitMr Alasdair MacSween Lecturer Department of Physiotherapy Ms Lesley Manson Senior Occupational Therapist The Therapy CentreDr D. A. S Marshall Consultant Physician/Rheumatologist Inverclyde Rheumatology DepartmentDr Gordon S D Paterkin Medical Director Grampian Primary Care NHS TrustMs Sharon Pfleger Consultant in Pharmaceutical Public Health Western Isles & Highland NHS BoardsDr Duncan PorterProfessor David M Reid Professor of Rheumatology University of AberdeenMr Norris Rennie Consultant Rheumatologist Aberdeen Royal InfirmaryMr David Richardson Health Policy Advisor Ayrshire & Arran NHS BoardMr D Stanley Secretary British Elbow & Shoulder SocietyProfessor Deborah Symmons Professor of Rheumatology School of Epidemiology & Health Sciences

& Muscoloskeletal EpidemiologyMs Jan Warner Director of Reviews Clinical Standards Board for Scotland Mr R H Smith Fellow & Secretary Royal College of Physicians Professor Tony Wells Chief Executive Tayside NHS BoardDr Rajan Madhock Consultant Rheumatologist Centre for Rheumatic DiseasesDr Malcolm Steven Consultant Physician Department of MedicineMr George J Brechin Interim Chief Executive Fife NHS BoardDr Sheila Scott Director of Health Planning Argyll & Clyde Acute Hospitals NHS TrustMrs Kim Stewart Senior 2 Occupational Therapist Occupational Therapy Department Dr Caroline Morrison Consultant in Public Health Medicine Greater Glasgow NHS BoardDr Robin Knill Jones Department of Public Health Glasgow UniversityDr Olivia Wolf Department of Public HealthMs Roseanne McMahon Physical Activity Task Force Scottish ExecutiveMs Katie McAlary Senior Occupational Therapist Southern General HospitalMs Janet Harkness Fife Rheumatic Disease Unit Cameron HospitalMr Andrew Thomas Honorary Secretary Rheumatoid Arthritis Surgical SocietyMs Dawn Stobbs NAROT Chairperson National Association of Rheumatology

Occupational TherapistsMs Mel Miller Health Planning & Quality Division Scottish Executive Health DepartmentMs Darryl McGhee Southern General HospitalMs Sue Oliver

This section describes the impact ofrheumatoid arthritis in Scotland. Estimatesof the incidence and prevalence of thedisease in each NHS Board area are given inAppendix 10.

Rheumatoid arthritis in the context ofrheumatic diseasesRheumatoid arthritis is one of a group ofdisorders known as the rheumaticdiseasesi. Together they are the mostfrequently self-reported causes of ill-healthand disability in the UK1. There are over200 disorders in this group. They includesome disorders which are more common(but generally much less disabling) thanRA, for example:• osteoarthritis• soft tissue disorders (e.g. tennis elbow,

frozen shoulder)• back pain• osteoporosis

They also include disorders which are muchless common than RA, for example:• inflammatory arthritis associated with

psoriasis or bowel disease• gout• connective tissue diseases (e.g. scleroderma)

Key issues in the epidemiology ofrheumatoid arthritis

Unknown causeThe cause of RA is not yet fully understood.Like many other chronic diseases it seemslikely that both genetic endowment and, asyet unknown, environmental agents areimportant.

Main risk factors – age, gender and family historyThe prevalence of RA is very low inchildhood and early adult life, starts toincrease markedly towards middle age andpeaks between ages 50 and 70. The diseaseis two to three times more common infemales than in males. Although familyhistory is a risk factor, at least 80% of thosewith RA will have no other family membersaffected.

Effect of ethnicityNo studies of RA in Scottish Asian or otherethnic minority groups have beenperformed. However studies conducted inEngland have shown a lower prevalence ofRA in those of both Pakistani2 and Black-Caribbean origin3 than white caucasiansliving there.

Prevention of disease is not yet possibleAs the cause is unknown and the risk factorsare fairly non-specific there is currently noway to prevent the disease from occurringand no screening test to detect it pre-symptomatically.

How many people with RA can we expect inScotland?Incidence refers to the number of new casesarising annually in a population; prevalencerefers to the number of existing cases. Thereare a number of ways to estimate incidenceand prevalence:• numbers attending rheumatology clinics

give rough estimates but are inaccurate • number of new and existing consultations

in primary care give more accurate

Appendix three.The impact of rheumatoid arthritison the Scottish population

27

i The terminology can be confusing. Essentially, RA is one of the rheumatic diseases. Rheumatoid disease is when rheumatoid arthritis affectstissues and organs other than the joints.

28

estimates but tend to miss those whohave mild disease or who are in remission.A small scale Scottish prevalence study4

and data from a sample of Scottishgeneral practices5,ii estimate adultprevalence at between 330 and 550 per100,000 population

• the best method of establishingincidence and prevalence is to use aprospective system of registering andevaluating all new cases in thecommunity. In 1989 such a system, theNorfolk Arthritis Register (NOAR), was setup in Norfolk Health Authority: an areawith 286 GPs in 77 practices lookingafter around 485,000 patients. Figuresnow available for the 1990 cohort ofincident cases suggest an incidence rateof 56 per 100,000 in adult women and27 per 100,000 in men aged 16 andabove6 with a prevalence rate of 810 per100,0007.

Estimates of incidence and prevalence forScotland by NHS Board area are given inAppendix 10 based on figures from theNOAR. Though the characteristics of thispopulation may differ from the Scottishpopulation, in the absence of large well-conducted studies in Scotland, these giveour best estimate.

How disabled are people with rheumatoidarthritis in Scotland?Generally, the longer you have RA the moredisabled you become. Outcomes are muchbetter in those who use disease modifyingdrugs than in those who do not – especiallywhen treatment is started early (seeAppendix 4). A study of 732 patients with

RA in England8 examined five years after theonset of RA found:• 40% of people had minimal or no

impairment• 16% were severely disabled• 10% had home adaptations or were

wheelchair users• 17% had undergone surgery for RA • 9% had joint replacement surgery • 27% of those in work had work disability• severe disablement was associated with

female gender, age over 60 atpresentation and moderate to severedisablement at presentation.

Deprivation predicts poorer outcomeThere is evidence from studies conducted inGlasgow that socio-economic deprivation isan important predictor of worse outcome inRA9;10. The reasons for this are as yet unclearbut may include:-• co-morbid disease• lifestyle factors (e.g. diet, exercise, smoking)• poorer self-management skills• later presentation with disease• access to health care services.

Anecdotal evidence from Highland NHSBoard suggests that those living in ruraldeprivation similarly fare worse. Physicaldisability causes disproportionate problemsfor those patients who make a living inmanual occupations.

Life expectancy is shortenedThe life expectancy of the most disabledpatients with RA is similar to patientssuffering from triple vessel coronary arterydisease or stage 4 Hodgkin’s disease11. Themain causes of death in people with RA are

ii We would like to thank Mathew Armstrong and Lindsey Harkins of ISD for further analysis of this data.

heart disease and cancer. Indeed heartdisease is said to be twice as common inpeople with RA as in the general population.After taking classical cardiovascular riskfactors into account, RA is an independentrisk factor for coronary heart disease12.

A relationship was found between socio-economic status and mortality rate in agroup of 200 patients attending a Glasgowclinic. Forty eight per cent were dead at 12year follow up. However, only 36% had diedin the most affluent groups compared to62% in the more deprived groups13.

Geographical variationThere is insufficient evidence to commenton the disease spread or variability betweenNHS Board areas.

Time trendsConsultation rates in primary care for RA inthe UK appear to be declining. The RoyalCollege of General Practitioners surveys ofconsultations for different disorders whichtook place in 1981-214 and 1991-215 show adecline in consulting prevalence for RA inall age groups and both sexes. This declineis consistent with recent trends in otherWestern European countries and the UnitedStates16. Although these figures aresuggestive of a reduction in incidence andprevalence, they may be explained byother factors such as better disease control.Therefore, no firm evidence currently existsto show any changes over time inincidence and prevalence. Despite this,there is no evidence of a reduction in thenumbers of patients requiring jointarthroplasty for RA17.

Economic burden of diseaseThere have been no studies to dateestimating the total costs of RA in Scotland.The burden of RA in England has beenestimated at £1.256 billion18, over half ofwhich results from lost earnings. The majorhealthcare costs of RA come from long-terminstitutional care and admission to hospital.The cost of drugs (including monitoring andmanagement of toxicity) accounts for onlyaround 15% of the total costs. This againemphasises the importance of earlydiagnosis and treatment.

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30

There are a number of possible interventionsthat can increase health gainiii. These rangefrom treatment of individual patients tointerventions which improve publicawareness. Here we consider interventionsby their primary target group, but bear inmind that they usually have ramificationsbeyond this. In the final section we revieweconomic evaluation of interventions in RA.

Interventions targeting the general publicWe need to improve public awareness of RA,and the needs of those with RA, to create amore supportive environment. Key messagesinclude:• the need to consult early• the better outcomes now available with

treatment.

Interventions to improve public awarenessmay include advertising campaigns and theuse of storylines about people with RA inpopular television programmesiv. Nosystematic evaluations of either of thesemethods have been performed. However, wehave good indirect evidence from theliterature on the effectiveness of healthpromotion campaigns that they are likely tobe effective19. Since such campaigns are mosteffective where there is a connection to localservices, any national or local campaignsneed to be planned in consultation withthose who have RA and tied into offers offurther information and help through help-lines, NHS 24 etc.

Interventions targeting employersThere is considerable evidence that peoplewith RA experience employment difficultiesand often have to give up work20. There are

no specific studies looking at targetingemployers, but it seems reasonable toaccept that any measures to help retain andrecruit people with RA are worthwhile.Details of government schemes such as‘Access to Work’ and ‘New Deal for DisabledPeople’ can be obtained from disabilityemployment advisers who can be contactedthrough local Job Centres.

Interventions targeting health serviceworkers and policy makersTo bring about the conditions necessary forchange in health services, we need toimprove awareness of RA amongst clinicians,managers, commissioners and policymakers. This involves:• creating a vision of what can be achieved

for people with RA• showing how a few small but significant

changes by individuals can make it happen.

Interventions to achieve this include thisneeds assessment process itself andadvocacy/lobbying by voluntaryorganisations led by service users. There isgood evidence that the involvement ofservice users can effectively influence policyand practice21 – indeed service userinvolvement is now a major building blockof the NHS in Scotland22.

Interventions targeting clinical practiceThese are interventions specifically designedto improve clinical practice. They may becodified in guidelines and protocols or formpart of professional education programmes.

There is good evidence that usingguidelines, protocols and educational

Appendix four.What helps in rheumatoid arthritis?

iii The interventions discussed below were those felt to be of most help by the reference group. Information on effectiveness was obtainedfrom national experts, SIGN guidelines and reviewing the relevant literature.

iv For example the recent edition of 'Holby City', BBC1, February 2002.

interventions can improve clinical practice23.The evidence also suggests that the use ofmultiple strategies to change clinicalbehaviour is likely to be more effective thanthe use of single interventions24.

There is good evidence that the followingeducational interventions are generallyeffective25:• educational materials and reminders• outreach visits • local opinion leaders• continuing medical education.

However, educational interventions inprimary care are hampered by the fact thatrheumatology is not a core curricular subjectin general practice training, despiterheumatic diseases being the commonestcause of disabling illness seen in primary care.

It is too early to assess the effectiveness ofthe recently produced SIGN guidelines26 forearly arthritis. Anecdotally, however, anumber of rheumatology units are movingtowards using some of them as servicestandards.

Interventions targeting individuals withrheumatoid arthritisThe importance of good control of thedisease process with disease-modifying

drugs (DMARDs) cannot beoveremphasised, and the majority ofpatients will require sustained disease-modifying therapy. However, RA must alsobe seen in the context of the whole person:disease control is one aspect of a complexprocess leading to multiple outcomes, all ofwhich need considered. This sectionconsiders the effectiveness of:1. specialist treatment2. collaborative approach3. self-management and patient education4. multidisciplinary team care5. drug treatment6. surgical treatment7. complementary and alternative therapies8. exercise.

Note: It should be noted that there are anumber of interventions for which evidencedoes not exist. Often this is because theeffectiveness is self-evident (e.g. supplyinghome equipment such as bath hoists), butsometimes it is because making acomparison with a different intervention orno intervention would be unethical.

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1 Specialist treatmentThere is strong evidence that specialist secondary care services give betteroutcomes than general services27. Wemight also expect nurse specialists,specialist physiotherapists, occupationaltherapists, surgeons and GPs withspecialist skills in rheumatology to bemore effective than their counterpartswith generalist skills, but there is noevidence to support this at the moment.

2 Collaborative approachThe collaborative approach to the care ofchronic illness sees the patient asworking in partnership with the careteam. The key elements are:• patients and care providers have

shared goals• there is a sustained working

relationship• mutual understanding of roles and

responsibilities• appropriate skills to carry out roles.

This approach has been shown to beeffective in a number of chronic diseasesincluding arthritis28. It has similaritieswith the patient centred approach whichhas also been shown to be effective29. Inboth these approaches the essential

element is that the balance of power inthe therapeutic relationship is shiftedmore towards the patient. However, withpower comes responsibility, and thepatient is encouraged to take a muchgreater role in self-management.

3 Self-management and patienteducationThis approach has been pioneered in theUK by Arthritis Care with the user-led‘Challenging Arthritis’ course. The courseis geared to help participants deal withthe pain and psychological difficultiesthat often result from RA. It also enablesparticipants to develop the skills requiredto manage arthritis more effectively andto make well-founded decisions abouthow to control their lives.

In Scotland each course is led by one of79 accredited volunteer course leaders.Local training and quality assurance aresupported by training services managersbased across Scotlandv.

There is evidence to support theeffectiveness of this programme. It isreviewed in the recently published reporton the ‘Expert Patient’21 whichrecommends that these courses become

v In the last three years 150 courses have been held throughout Scotland, funded (up to March 2000) by the national Lottery Charities Board.However, sources of funding in each NHS Board area now need to be identified to continue this service.

part of the mainstream servicescommissioned and provided for peoplewith RA in England and Wales by 2007.

Patient education in Scotland takes anumber of forms. In most centres, nurses,pharmacists, physiotherapists,occupational therapists or other membersof the clinic team will provideinformation tailored to the individual,combined with leaflets containing moregeneral information. In Aberdeen, aresource centre where patients canreceive information and advice from atrained arthritis nurse has been set upnear the town centre. Patients can alsowatch instructional videos and getleaflets.The centre also has a nurse-ledhelpline for patients in contact with thelocal service.

Patient education is both important andeffective30. It is probably most effectivewhen integrated with self-management.

4 Multidisciplinary team careMultidisciplinary team care is nowconsidered part of the standardapproach to RA. No one discipline orprofessional has all the necessary skills totackle the multiple, diverse and complexproblems associated with RA. Pooling theskills and resources of differentprofessional groups offers a way forward.Besides, the capacity of the team as awhole is often greater than thecombined strengths of the individualteam members (also see Appendix 8 onthe team approach to RA).

The limited evidence available oneffectiveness suggests that use of themultidisciplinary team improves outcomein the short term.31 Longer term studiesare now needed.

An increasingly common addition to theteam has been the nurse specialist. Thesenurses tend to work fairly autonomouslybut are clinically accountable to theconsultant rheumatologist. Their roles varydepending on local circumstances butmainly they provide:• patient education, support and advice• crisis management services e.g.

helplines, nurse-led clinics• co-ordination of other specialist input• drug monitoring, metrology (clinical

outcome measurement)• they may also perform technical

procedures such as removing excess fluidfrom joints and injecting joints withsteroid drugs to reduce inflammation.

Studies of the effectiveness of nursespecialists have been limited but haveshown promising results32. At themoment provision of rheumatology nursespecialists in Scotland is patchy.

Another recent development has been theuse of physiotherapist led musculo-skeletalclinics to triage those patients who mayneed specialist rheumatology or orthopaedicservices. These may impact indirectly onservices for RA by reducing workloads inboth rheumatology and orthopaedicsurgery. These services have only beendeveloped in a few areas in Scotland.

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5 Drug treatmentThe evidence for effectiveness ofdifferent drug treatments is well coveredin the SIGN guidelines. All the drugscurrently in use have been well studiedand are of clearly proven benefitalthough all have some adverse effects.

The main groups are:

• Non-steroid anti-inflammatory drugs(NSAIDs)These drugs relieve pain, swelling andstiffness but they do not affect thedisease process. They can causeindigestion, heartburn and sometimesbleeding from the stomach as sideeffects. New drugs in this group haverecently been developed. These are lesslikely to cause the digestive system sideeffects but they are more expensive andare only recommended for patients athigh risk of developing these sideeffects (Appendix 6).

• Disease-modifying anti-rheumatic drugs(DMARDs)These can modify the disease process,but they take some time to work. Theymay have serious side effects, but withregular monitoring these can beavoided or minimised. Two or more ofthese drugs are occasionally usedtogether.

• SteroidsThese can be given orally or injectedinto a painful joint to reduceinflammation. They can also be givenintramuscularly for widespread flare or

predominantly multiple small joint flare.They do not affect the disease process.They are safe to use occasionally but,due to their side effects, are not suitablefor long term use, unless in lowmaintenance doses.

• Anti-tumour necrosis factor (TNF) drugsThese drugs are new and expensive.They modify the disease process andresult in improvements in those peoplewho do not respond to DMARDs.Significant numbers have achievedresponses previously not expected withDMARDS. They are useful second linedrugs and recent guidance from NICEand HTBS recommends that their usebe considered for the treatment ofadults who have continuing clinicalactive RA that has not respondedadequately to at least two DMARDs,including methotrexate (unlesscontraindicated). (See Appendix 6) Atthe moment they are prescribedaccording to a rigid protocol as part ofa pragmatic Scotland-wide study(SPECTRA). Some NHS Boards haveincluded funding of these drugs in theirhealth plan, others have not.vi

6 Surgical treatmentSurgery is of use in established diseaseand may also be required early in thedisease process.The aims of surgery in RAare to relieve pain, restore function and,occasionally, prevent or delay jointerosion or tendon rupture. It can be usedto stiffen, resect (remove) or replacejoints; to repair, release or realign softtissues surrounding the joints; and to

vi The overall population health gain from these drugs is likely to be small, as relatively few people with RA are likely to need them. For thosewho do, the individual health gain may be quite considerable. NHS Boards are guided by local area drug and therapeutics committees andhave to take account of the opportunity cost of prescribing these drugs.

35

remove synovitis (the inflamed jointlining) from joints or tendons to preventsoft tissue rupture when drug therapy hasfailed to obtain local control.

There have been relatively fewprocedures evaluated by randomisedcontrolled trials (exceptions include hipand knee replacement surgery33). This isusually because the need for surgery isself-evident and it would be unethical towithhold it. However, there have been anumber of long-term observationalstudies showing the benefits of surgicalintervention.

Specific procedures relating to differentjoints are outlined in Box B.

Joint replacement can dramaticallyimprove pain and function. Total hipreplacement results in a significant andsustained improvement in the quality oflife for the majority of patients34.

Patients with multi-joint disease requiringcomplex reconstruction should have theirsurgery regarded as a series of plannedlinked therapies and not as separateepisodes for waiting list purposes. Thebenefits of surgery on one area may belost if the associated correctiveprocedures are delayed by organisationalrequirements imposed by waiting listmanagement. A full multidisciplinary pre-operative assessment can contribute toeffective planning, timing and sequenceof surgical interventions. Extended post-operative rehabilitation should beavailable for RA patients in view of theirspecial needs.

7 Complementary and alternative (CAM) therapies In a review of fourteen surveys onpatients’ use of CAM35 in rheumatologicalconditions it was found that prevalenceof use varies between 30% to nearly100%. The patients’ level of satisfactionwith complementary medicine was oftenconsiderable and few adverse effects werereported. It has been argued36 that inaddition to the issue of finding additionalor alternative therapies, these patients areoften dissatisfied with the traditionalmedical approach to illness and areseeking a more patient focussed andwhole person approach. In this approachthe disease is not treated in isolation butconsidered in the context of the person,taking into account mind-body links.Most orthodox health professionalswould also endorse such a holisticapproach in principle and advocate a bio-psycho-social model, but point out thatlimitations on time make it impractical inconventional practice.

There is now mounting evidence thatpsychological factors may work on theimmune system through neural andhormonal pathways(psychoneuroimmunology) and in thisway alter disease progression andenhance healing37–39. The whole personapproach accepts that the therapeuticencounter and process may be used toinfluence these pathways, to promotehealing and modify disease activity.

However, the evidence for this holisticapproach is currently general rather thanspecific to particular diseases such as RA.

36

While there is evidence40;41 that patientshaving a longer and more individualisedconsultation, such as those at theGlasgow Homeopathic Hospital (GHH),feel more enabled than they did whenattending their GPs, and have resultanthealth gains and reduction in analgesia,there is currently no hard evidence toprove that this results in diseasemodificationvii.

Similarly, no disease-modifying impactfrom specific complementary treatment ofRA has yet been proven. CAM therapiesuse and demand is well ahead of thecreation of research infrastructure, butsome emerging work is yielding mixedevidence for CAM as a symptomatictherapy. Many studies are too poormethodologically to make comment foror against the effectiveness of CAM

Site Common Reasons For Surgery Main Types of Intervention

Neck• Pain• Pressure on spinal cord

• Cord decompression, • Fusion of joint

Shoulder• Pain• Local failure to respond to

systemic therapy

• Arthroscopic subacromial decompression• Rotator cuff repair• Joint replacement

Elbow

• Pain, nodules, pressure onulnar nerve

• Local failure to respond tosystemic therapy

• Disability

• Removal of nodules• Freeing or moving ulnar nerve• Synovectomy• Radial head excision• Contracture release• Joint replacement

Hand and wrist

• Pain• Disability • Deterioration of function• Pressure on median nerve• Local failure to respond to

systemic therapy

• Removal of part of ulna bone• Synovectomy tendon transfer• Fusion of joints• Joint replacement• Freeing median nerve

Hip• Pain • Disability • Contracture

• Contracture release• Joint replacement

Knee

• Pain• Disability • Instability • Stiffness• Local failure to respond to

systemic therapy

• Synovectomy• Arthrodesis• Joint replacement contracture release

Foot and ankle• Pain• Disability • Deformity

• Fusion of joints• Removal of bone• Joint replacement

Box B: Surgical Interventions for RA by site

vii GHH is an NHS integrative care unit combining orthodox and CAM therapy with a whole person approach.

37

therapies. However, a systematic review ofcontrolled trial evidence42 noted that given thehigh rates of adverse effects of synthetic drugsused for RA, the following CAM modalitieswould seem to be reasonable therapeuticoptions: borage, fish oil, phytodolor thunder godvine, relaxation techniques. There is alsosuggestive but less developed evidence for otherapproaches such as homoeopathy anddietary/fasting regimes. No firm evidence hasbeen found to support the role of diet in themanagement of RA, but anecdotal reports ofspecific diets affecting inflammation levels wouldsuggest that further research is merited.Homoeopathy exemplifies the problem ofevaluating evidence in this field. It has reasonableevidence of general effectiveness over placebo43,however what little specific testing there hasbeen in RA44;45 suggests a useful ‘non-specific’impact but is insufficient to state confidentlythere is a specific effect. Yet other approaches –such as yoga – have encouraging but anecdotalevidence so far untested in rigorous clinical trials.In those therapies where a direct disease effecthas been shown, the effect is usually moderateto small42, but the ‘non-specific’ impact may beuseful 44;45. Thus such CAM treatments may beuseful as adjuvant treatments rather than truetherapeutic alternatives.

8 ExerciseAll people with RA should be encouraged toundertake regular exercise. Exercise is prescribedto relieve pain and to increase or maintain jointrange of movement, muscle strength andfunctional ability. Increasing physical activity alsohas proven benefits in minimising the risk ofcoronary heart disease46 which has recently beenfound to occur more frequently in those with RA12.

Traditionally exercise has been relatively low inintensity and undertaken in a position that wouldreduce pressure on the joints (for example,

seated, lying or in water). There is now strongevidence to support the effectiveness of moreaerobic types of exercise (such as walking,cycling, dancing, and swimming). Aerobicexercise of low to moderate intensity cansignificantly improve general fitness and musclestrength without increasing pain or inflammatoryactivity47. This evidence demands a change inbeliefs regarding exercise. It also requiresalterations to service provision within the healthservice and the community.viii

Despite the popularity of hydrotherapy, theevidence showing physical benefit is limited48

although it can improve self-efficacy26.

Economic evaluation of interventionsfor rheumatoid arthritisThere have been few economic evaluations whichwould meet current quality standards49. However,there is reasonably good evidence to show:• combination therapy of high dose steroids, and

two DMARDs (Methotrexate and sulphasalazine)is more cost-effective than sulphasalazinealone50. However this combination is notrecommended by the SIGN guidelines

• the DMARD cyclosporin is less cost-effectivethan the DMARDs azathioprine andpenicillamine51

• while studies have shown the efficacy of biologicdrugs, there are currently insufficient economicdata to draw any firm conclusions

• despite the costs, surgery in RA can beextremely cost-beneficial52

• the cost utility of total hip replacement isestimated at £750 per Quality Adjusted Life Year(Qaly) gained. (£5000 for heart transplant)

• inpatient and daypatient care are equally cost-effective for uncomplicated active RA53

• user-led arthritis self-management coursesreduce inpatient and outpatient use and costs,such that the benefits (in averted costs alone) faroutweigh the costs54.

viii For example, GP exercise on referral schemes

38

A range of NHS and other services is currentlyavailable for people with RA in Scotland.Those consulted as part of this needsassessment process felt that these aregenerally of a high standard but that there isconsiderable scope to make them even better.

In this section we set out: • the structure of the services available for

people with RA• the patient's pathway through the services• information on service use• what we know about effectiveness of our

services• scope for improvement in current

services.

The structure of the services available forpeople with rheumatoid arthritisAs with all chronic illnesses, services forpeople with RA are organised around theindividual needs of a patient. These needsmay change as time goes on. Services forpeople with RA are currently available in:• primary care• secondary and tertiary care• the community.

Initially a patient may self medicate or maysee someone other than their GP for advice,e.g. purchase painkillers from theirpharmacist. The next point of contact isusually the GP who makes a provisionaldiagnosis and then refers to arheumatologist for further assessment andtreatment. The GP and other practice staffmay then be involved in drug monitoring aspart of shared care arrangements. Thisinvolves regular review of drug dose,response to treatment and side effects. Itusually also involves discussion with thepatient, an examination and blood testing.The GP sees the patient in the context of

their social, personal and medicalbackground, not just in the context of thedisease, and therefore plays a key role inintegrating the management of the RA inthe context of the patients other strengthsand difficulties.

A number of professional groups offerservices in primary care and in thecommunity. These include allied healthprofessionals, community nurses and socialwork. Voluntary organisations, such asArthritis Care, base services in thecommunity. Complementary and alternativetherapists usually operate from a communitybase. These services are usually poorlycoordinated internally and with primary andsecondary care.

In the secondary care setting therheumatologist is the first contact.Increasingly the rheumatologist is supportedby a multidisciplinary team (although inmany areas this approach is betterdeveloped for inpatients than foroutpatients). Rheumatologists liase withcolleagues in orthopaedic surgery. Hospitalbased services usually operate throughoutpatient clinics, day patient services andinpatient beds.

A lot of routine monitoring is currently carriedout in secondary care but may be moreappropriately performed in primary care.

The multidisciplinary team in rheumatologyinvolves ward, clinic and community-basedstaff. It may include some or all of thefollowing professions: dietitians, nurses,occupational therapists, occupationaltherapists, orthotists, pharmacists,physiotherapists, podiatrists, rheumatologists,social workers, surgeons.

Appendix five.Current services available to peoplewith rheumatoid arthritis in Scotland

39

Box C: The Pathway Through Services

Public awareness

Delay

‘New’ Patient

Returns Tests/Interventions

Chronic Disease package GP Training/support

URGENT: Screening referralsROUTINE

Early arthritis clinics

Tests/Diagnostic criteria

SharedOutpatient

Self-managementDay patient Inpatient

Outcome

Not RA

Location

GPSecondary

care

Person develops symptoms

Decides to seek advice

Consultation with GP

Referral letter

Appointment sent

Specialist consultation

Assessment

Definite/Probable RA

Management

Service

Voluntary sector

Employers

Complementary/Alternativetherapies

Multidisciplinary team

40

The patient's pathway through the servicesThe key issue is that all patients should beassessed by a rheumatologist and receivetreatment as soon as possible after the onsetof the disease. Therefore delay at any stage ispotentially harmful and needs to be avoided.The pathway (shown in Box C) is not undulycomplex but it is subject to delay at anumber of points.

People with RA may present to the GPrelatively late after the development ofsymptoms. This may be for a variety ofreasons – including that they may feel littlecan be done to help or may have been selfmedicating.

There are also a number of patients whopresent to accident and emergency units orother orthopaedic services with one or moreinflamed joints as their first presentation withRA. An awareness campaign both in accidentand emergency and orthopaedics wouldhelp early diagnosis in such patients.

The GP should be able to refer the patientwith suspected RA promptly (within 12weeks of the onset of symptoms) forassessment by a rheumatologist. In someareas of Scotland waiting times for a newrheumatology appointment are long, sothere are local arrangements with GPs tofast-track people with suspected RA.

Once disease modifying drug treatment hasbeen started delays are less crucial to diseaseoutcome, but can profoundly affect otheroutcomes such psychological well-being,satisfaction with services and the relationshipbetween the patient and the healthcareprofessional. Therefore, the next stage in thepathway (referral to other members of themultidisciplinary team, orthopaedic surgeons

and possibly social work) needs to happenpromptly when required.

For all but those with mild disease who willbe managed successfully in primary care,there should be regular review in secondarycare or shared care between primary andsecondary care. This regular review includesmonitoring the effects of treatment,including being alert to adverse effects.

Crises such as sudden unexpected flare-upsin the disease or the development of severeor unusual side effects need prompt andcompetent help. While some GPs with aspecial interest or skills in rheumatology areable to handle these effectively on their own,in some areas of Scotland access to aspecialist nurse-led clinic or helpline has beenset up. In other areas, emergency admissionor an urgent appointment with arheumatologist is used.

Patients with rheumatoid disease presentwith complications which require input fromother specialists. These includeophthalmologists, respiratory physicians,gastro-enterologists, cardiologists and renalphysicians.

Pathways between health services and thevoluntary sector, such as Arthritis Care, arecurrently not well established and individualsoften have to find out about voluntary sectorservices for themselves. Some NHS Boardsare willing to pay for the user-led self-management courses, such as those run byArthritis Care, others are not.

Generally, there are no established referralpathways from health services tocomplementary and alternative therapists.However, a considerable number of people

with RA are using CAM services. This maybe for a variety of reasons including, forexample, increased patient choice orproblems tolerating the side effects ofconventional treatments. Given the highproportion of patients now using CAM insome way, and the possible implications fortheir conventional treatment, improvedlinks between conventional and CAMservices may be of benefit (see CAMsection in Appendix 4).

Information on service use The costs of treating RA are high. RAconstitutes just over half of therheumatology workload in secondary careand is responsible for about 54 GPconsultations per year in the averagegeneral practiceix.

The Clinical Resource and Audit Group(CRAG) Scottish single-handed rheumatologyaudit in 1994 showed that RA accounted forhalf of all outpatient work and almost twothirds of all inpatient work55.

The direct costs of treating people with RAare two to three times higher than thehealthcare expenditure on people ofmatched age and sex without arthritis18. Inaddition, one study showed increased costsfor disease-related care and for other co-morbid diseases in this group56. This studyalso showed much higher medical costs forRA than a comparison group withosteoarthritis.

In the year 1999-2000x there were 66,931rheumatology outpatient attendances at the34 clinic sites in Scotland. Around a fifth of

these were new referrals. If we assume thatRA accounts for half of these, then we canestimate that during this year RA accountedfor approximately 33,500 attendances. Thenet cost for each attendance was on average£47, making a total cost of £1.5million foroutpatient treatment of RA.

For the same year there were 2,760discharges from the 13 Scottishrheumatology inpatient units, at an averagenet cost of £2,058 per case. If we assumethat RA accounts for 60% of thesedischarges then this gives a total cost of£3.5 million for inpatient treatment of RA.

Also in this year there were a total of 1,585rheumatology day patient cases at sevenhospitals in Scotland at a net average cost percase of £276, which amounts to £437,000. Ifwe assume conservatively that half these caseswere of RA this adds another £0.2 million.

It is not possible to separate out those withRA receiving surgery from those with otherdisorders. However the costs for surgery inthis group are likely to be substantial.Evidence from the Swedish nationalregistries17 would suggest that, despite theintroduction of modern therapies over thelast 10 years, the number of RA patientsundergoing hip and knee joint replacementsurgery has remained constant. The use ofbiological treatments such as anti TNFtherapy will have an unpredictable effect onfuture requirements for surgery, and itshould not be assumed that the need forsurgical treatment will decrease. Indeed, ifmortality is reduced, the requirement forsurgery may increase.

41

ix This figure may be an under-estimate of actual consultations in primary care given that non-medical consultations are not recordedx The Scottish data referred to in this section are from ISD and are available on their website.

42

Patients who require surgery for RA oftenhave been under medical treatment for sometime. Because of the process of referral, theshortage of specialist clinicians and in-patient waiting lists for orthopaedics, thesepatients can often wait for up to two yearsfor each joint replacement. This wait isunacceptable for people in pain withconsiderable disability, and unreasonable forpatients for whom surgery should be anintegral part of their care. Therefore, thewaiting time from initial referral by anexperienced member of the team, whenjoint replacement is considered, to actualsurgery for patients with RA should be asshort as possible, compatible with clinicalneed, and ideally no more than eight weeks.

While the majority of RA patients who needjoint replacement surgery require only oneor two joints replaced (often forosteoarthritis consequent to RA rather thanfor RA itself), around 5% of patients requiresurgery for multiple joint involvement.Planning surgery in these more complexcases is important but sometimes difficultxi

(for example, lower limb surgery is usuallycarried out before upper limb surgery, as theuse of walking aids may aggravate upperlimb problems).

Use of primary care services can beestimated from the continuous morbidityrecording (CMR) data submitted to ISDfrom the 75 Scottish practices involved in

this monitoring system. In the year fromJanuary to December 2000 there were, onaverage, 10.1 contacts per 1000 populationfor RA. This involved an average of 18patients with RA in each practice makingabout three contacts each during the yeari.e. about 54 consultations per practice peryearxii. CMR data do not record consultationswith non-medical staff in primary care.

What we know about effectiveness ofour services?We really know very little. Although there isa wealth of literature about the effectivenessof specific interventions for RA, there is verylittle on the effectiveness of the servicesthemselves. Studies are often dependent onthe nature of local services and cannot begeneralised to other areas.

There have been studies comparinginpatient treatment with intensiveoutpatient treatment, which have showninpatient treatment to be better57. A studyfrom Edinburgh showed inpatient anddaypatient care to be equal in terms ofeffectiveness and costs for uncomplicatedactive RA53.

xi This is because many orthopaedic surgeons are now regional specialists in upper limb, lower limb or back problems and deal with RApatients in their area of expertise. This means quality of individual procedures is high and cross-boundary referral low, however thosepatients requiring multiple surgeries may find no overall co-ordination or awareness of opportunities for surgery to less commonly operatedjoints. Surgeons with an interest in rheuma surgery are better placed to do this.

xii This figure may be an under-estimate of actual consultations in primary care given that non-medical consultation are not recorded.

The Health Technology Board for Scotland(HTBS) has advised that the NICETechnology Appraisal Guidance – No.27:The use of cyclo-oxygenase (Cox) II selectiveinhibitors, celecoxib, rofecoxib, meloxicamand etodolac for osteoarthritis andrheumatoid arthritis (see www.htbs.co.uk/htbsadvice/acomment.asp?did=346), andNICE Technology Appraisal Guidance – No.

36 Guidance on the use of etanercept andinfliximab for the treatment of rheumatoidarthritis (see www.htbs.co.uk/htbsadvice/acomment.asp?did=635) are as valid forScotland as for England and Wales.

The full HTBS Comment on the NICEguidance can be found on the HTBS website(www.htbs.co.uk).

Appendix six.Health Technology Board advice

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44

Setting the StandardThis section has been written by ArthritisCare Scotland to explain what you shouldexpect from your health services and otheragencies if you have RA. It also lets youknow what you can do for yourself andother people with RAxiii.

It is necessary to acknowledge that thetreatment of RA is not an exact science andthat the disease and its progression impactsdifferently from person to person. Inaddition, because there is no cure as yet,health professionals do not and cannot beexpected to have all the answers. That iswhy it is so important to set out minimumstandards applying to the treatment of,and services to, people with RA to ensure afair and equitable response no matterwhere you live.

It is also important to highlight, that allservices received by a person with RA mustplace the patient within the context oftheir life. People with RA are not full timepatients. They have jobs, families,responsibilities, sensitivities and pressuresthat do not disappear on diagnosis of RA,and these need to be taken into account ifservices are to adequately support thepatient with RA to live a full andproductive life.

Disability Discrimination Act 1995Section 21 imposes a duty on serviceproviders to make adjustments to theirpremises to avoid discrimination againstdisabled people. This duty applies to allbuildings to which members of the public

have access, and include:• changing practices, policies and

procedures that make it impossible orunreasonably difficult for disabledpeople to use a service

• provision of auxiliary aids or serviceswhich would make it easier for, orenable, disabled people to use a service

• overcoming physical features that makeit impossible or unreasonably difficult fordisabled people to use a service, byproviding the service by a reasonablealternative method.

From 2004, service providers will have totake reasonable steps to remove, alter, orprovide reasonable means of avoidingphysical features that make it impossible orunreasonably difficult for disabled peopleto use a service.

The proposals outlined below are inaddition to the responsibility of serviceproviders to meet their obligations underthe Disability Discrimination Act (1995).

Primary care• Training – should reflect the fact that 15%

of all GP consultations are for arthritisrelated disorders, and should include anappropriate focus on rheumatology anddisability awareness.

• Appointments – ideally GPs should beable to offer non-urgent appointmentswithin 3 working days, especially in theearly stages of diagnosis. Sufficient timefor proper discussion of symptomsshould be allowed for.

Appendix seven.What you should expect fromyour local services

xiii This section was written by Angela Donaldson of Arthritis Care Scotland and aimed at people with RA. It is based on the current policystatements of Arthritis Care UK.

• Information – GP practice informationbooklets should include details of theaccessibility of the surgery, includingdisabled parking spaces and access to allfacilities within the surgery. Where GPshave several partners, information on eachindividual specialist medical interestshould be declared, eg. Member of thePrimary Care Rheumatology society.

• Home visits – some people with RA have adifficulty in reaching the surgery, andmay, at times, require home visits.

• Diagnosis of RA – all people, both newlydiagnosed and those with established RAshould receive enough information tounderstand the condition and its likelyprogress together with information onhow to manage their condition.

• Prompt referral – referral to rheumatologyspecialist within 12 weeks of the onset ofsymptoms.

• Access to other health professionals –physiotherapy, occupational therapy andpodiatry etc should ideally be accessedfrom the GP practice. Where this is notpossible or specialist rheumatology AHPsare considered more appropriate, promptand timely referral to external servicesshould be available.

• Self help organisations – primary careservices should be aware of and supplyinformation on organisations providingsupport and information to people witharthritis. In addition, they should be ableto directly refer people on to self-management and personal developmentcourses, such as those run by ArthritisCare, within their area.

• Repeat prescriptions – people with RArequire long-term medication and thisnecessitates the need for repeatprescriptions. Systems should be set inplace to minimise the number of journeysrequired to the surgery to obtainprescriptions. Either by using a postalsystem, at no expense to GPs, orpartnership with a local pharmacy.

• Shared care – most people with RA see ahospital based rheumatologist as well astheir GP. The introduction of a SharedCare Card, to be retained by the patientshould be encouraged. In addition, thepatient should be encouraged to maketheir own notes on treatments received byeither GP or consultant. This card can alsobe used to record the monitoring of drugside effects and disease activity.

• Supporting information – GPs arefrequently asked to provide letters ofsupport, or complete claim forms for statebenefit and other purposes. Where thisoccurs and if appropriate, consultationwith the person concerned on thecontent of the response should take place.

• Consultation – it is essential that patientsbe consulted when determining whatservices are provided and how their needsare to be met. Failure to do so will result ina meaningless partnership with the keypartner absent.

Secondary care• Prompt referral to specialist

rheumatologist – people with suspectedRA should be seen within 12 weeks of theonset of symptoms. These referrals shouldbe prioritised for early appointments witha rheumatologist.

45

46

• Access to multidisciplinary teams –rheumatology departments shouldinclude the service of a multidisciplinaryteam, including; consultant,rheumatology nurse practitioner,physiotherapist, occupational therapist,podiatrist, dietitian and pharmacist. Inorder that the team can maximise theirexpertise and time with patients it isessential that adequate administration staffare made available to support all membersof that team and their patients.Departments should regularly review theirwork practices and effectiveness monitored.

• Hospital transport – there should be adesignated, named person who hasresponsibility on a day-to-day basis forensuring that patients brought in for anappointment are also taken home again.The name and contact details of theperson responsible should be prominentlydisplayed. Where an unavoidable delayoccurs this should be communicated tothe person waiting via regular updates andstaff should also ascertain what support isneeded during the wait, eg. toilet facilities,telephone etc.

• Waiting areas – all waiting areas shouldhave a variety of seating. In areas notdesignated for rheumatology a priorityseating notice should be displayed.

• Appointments – the time allocated forappointments should be both genuineand achievable for patient and healthprofessional. Block bookings for a numberof patients at the same time for the sameconsultant are not acceptable. It shouldbe made clear at the time of making anappointment, who should be contacted ifa cancellation is necessary.

• Patient education – rheumatologydepartments should provide writtenmaterial to back up the information givenduring the consultation, particularly inrelation to the type of arthritis and thedrugs used to treat it. Rheumatologynurse practitioners have been shown tobe effective in this role. Other healthprofessionals within the team should alsoprovide written information on thespecific treatments given to each patient.Departments should be aware of, andprovide direct referrals to self-management programmes such as thoseprovided by Arthritis Care.

• Patient information – each rheumatologydepartment should have an informationarea providing basic information on themain Social Security Benefits and healthbenefits such as prescription charges andtransport costs to hospital. Informationon local support organisations and theirservices should also be made available,such as those provided by Arthritis Care.A designated person should beresponsible for ensuring the informationarea is kept well stocked. These servicescan be provided in conjunction withorganisations such as Arthritis Care, whoare currently restructuring in order tobetter support such a service.

• Surgery – combined clinics – the ability tomake an informed decision on whether ornot a surgical procedure is necessary is ofparamount importance. Consultationshould therefore take place within acombined clinic involving the patient,consultant rheumatologist andorthopaedic surgeon. If significant inputfrom other health professionals, such asphysiotherapist or occupational therapist,

has been given or will be required post-surgery, they should also be inattendance.

• Surgery – provision – designated surgeonsshould have a specific interest, andcontinuing professional training in surgeryfor people with RA, although in mostcases they will deal with people withother problems as well. There should alsobe centres which undertake highlyspecialised work including multi-jointsurgery and surgery for problems whichare uncommon xiv.

• Surgery – process of care – patients withRA who require a number of differentsurgical treatments should have theirprocedures seen as a process of care ratherthan a series of separate procedures.

• Inpatient care – some people with RA willrequire periods of hospitalisation duringthe course of their disease. Ideally thisshould be met by adequate provision ofrheumatology beds within dedicatedrheumatology wards. All inpatient facilitiesshould be appropriate to the needs of alllevels of physical impairment. Self-medication, which empowers people withRA to manage and retain control overtheir own condition, should beencouraged.

• Hospital discharge – to avoid unnecessarydelays from hospital, a well coordinatedapproach, involving health professionalsboth in primary and secondary care isessential. There should be one namedperson who takes lead responsibility for

liasing with all health professionals andkeeping the patient informed at all times.

Community careCommunity care services are vital to supportpeople with RA to lead full and productivelives. These should be provided as part of amulti-agency response and according to therecommendations of the Joint Futures Group(2001) and include: • an assessment process that is fair and

followed in all cases • clear objectives that promote the

independence of an individual whenassessing, devising, implementing andmonitoring a care package

• carrying out regular reviews to ensureusers needs are met

• an integrated approach to care withentitlement to services which supportindependent living irrespective of where aperson lives

• a lead agency identified to takeresponsibility for ensuring that allappropriate services are commissioned

• a charging policy that is fair and equitableno matter the level of support required orwhere the person lives

• timely provision of equipment andadaptations to assist with daily living

• access to childcare where appropriate• access to concessionary travel schemes• access to money advice where

appropriate• access to respite care for people with

severe disability.

Arthritis Care• Clear and accurate information about

arthritis is available from Arthritis Care

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xiv As advised in ‘Rheumatoid surgery in the United Kingdom and Ireland. Proposals for future development and training in this subspecialty oforthopaedics.’ Rheumatoid Arthritis Surgical Society, 2002. See: www.bonejointdecade.org/news/default.html

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Helplines Service offering practical,confidential support. They also provideuseful publications e.g. ‘Arthritis News’.

• They provide a range of self-management and personal developmentcourses, which are delivered locally andgive people confidence and skills tomanage their arthritis and improve theirquality of life.

• They provide practical and social supportthrough a network of nearly 600branches and groups, Young ArthritisCare and local contacts.They also haveoffices throughout the UK.

• They campaign for greater awareness ofthe needs of everyone with arthritis,improved services and an end todiscrimination.

• Four accessible hotels geared towardsthe needs of people with arthritis.

• They work closely with healthprofessionals and other arthritisorganisations in the UK andinternationally.

Employment and Welfare Benefits Being able to gain and retain employmentis not easy, and for people with RA thereare a number of additional issues that makeit particularly difficult. These are: • lack of confidence and self-esteem • unrealistic assessment of own strengths

and skills • lack of work experience• breaks in career development • lack of interview experience• perception that all state benefits will be lost • fear that benefits cannot be regained if

job does not work out.

The Disability Discrimination Act 1995imposes duties on employers and theseshould be enacted in full. In addition:

• disability leave should be introduced forpeople with RA who need a period ofrehabilitation following major surgerysuch as joint replacement or a flare – upof their arthritis

• personal capability assessment shouldtake account of pain, fatigue, stress andthe fluctuating nature of long-termconditions such as arthritis along withthe qualification, experience and age ofthe disabled person

• discussions between employer andemployee should take place at theearliest opportunity to establish whatreasonable adjustments can be made tohelp a person with arthritis carry out thetask of their job

• although for some people the impact ofarthritis results in a long period (10 to 15years) of being unable to work, duringthat time opportunities may arise thatenable the individual to regain their self-esteem and confidence and explorealternative options. These includeworking as volunteer before returning topart or full-time employment

• for some people, the pain and fatigueassociated with RA, often exacerbated bystress, can limit the number of hoursthey can work. In addition, thefluctuating nature of arthritis and theeffects of the physical impairment mostpeople with arthritis experience, mayresult in many deciding that, for them,work is simply not a viable option. Thisdecision should be respected. It will havebeen made by someone with many yearsexperience of managing their arthritis,and how they can best cope with it.Benefit recipients should not have theirintegrity questioned by being subjectedto continual reviews of their benefit ortreated as ‘scroungers’ on the state.

What You Can DoThere are a number of things you can do toimprove your local service.By providing feedback to the staff you can:• highlight problems and difficulties you

experience with the service• suggest improvements to the service.

It is helpful to feed comments back directlyto staff or to your GP. However, in somecases it may be more appropriate to usecomplaints procedures – to do this contactyour local NHS Board or your Local HealthCouncil.

Some services are active in training andresearch. There is absolutely no obligationon you to take part in either of theseactivities. However, any help you are able togive by agreeing to take part in these ifasked, can benefit others in the future andmay be of some direct benefit to you.

Finally, it is worthwhile keeping yourselfinformed about RA and currentdevelopments in what can be done to help.This will help you to feel more in controland will help you to form realistic

expectations of what you can achieve byworking with your local service.Useful information is available at thefollowing websites/helplines:

Arthritis Carewww.arthritiscare.org.uk0141 952 5433020 7380 6500

National Rheumatoid Arthritis Societywww.rheumatoid.org.uk 01628 670666

Arthritis Research Campaignwww.arc.org.uk0870 850 5000

British Society for Rheumatologywww.rheumatology.org.uk0207 242 3313

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50

Management of chronic disease involves ateam approach. The key ‘player’ in the teamis the patient, whose decisions and actionshave a major effect on the health outcomes.

The other ‘players’ come from a variety ofbackgrounds including primary care,secondary care, and the voluntary sector.They share their skills to produce health andreduce disability. The effect of this combinedteam approach is much greater than thesum of the contributions of the differentteam members.

The main features of this approach are:• health is seen as broadly determined• a focus on outcomes not processes• outcomes are viewed from multiple

perspectives• sharing of goals, information, decisions

and skills• communication and clarity• different roles and levels of involvement• mutual support• increasing specialisation of nurses, AHPs

and GPs.

The key ‘players’ in the management of RA are:• patient• family and social network• primary care – GP, practice nurse,

community physiotherapist, communitypharmacist, specialist staff

• secondary care – rheumatologist,orthopaedic surgeon, nurse (specialist),physiotherapist, occupational therapist,dietitian, podiatrist, orthotist,psychologist, pharmacist, laboratorysupport

• pharmacy services – pharmacists have animportant role to play in prescribingdecisions, medicines management andpatient education and empowerment

• voluntary sector – various organisationssuch as Arthritis Care (poorly integrated)

• complementary and alternative therapists(poorly integrated)

• local authority – social work, housing• work and pensions – employment

(re)training, benefits advice• employers.

Just as a team needs a managementstructure to support it, so the team in RAneeds strong management support fromthose planning, commissioning andimplementing the service to make sure it isadequately resourced and properlyintegrated.

Appendix eight.The team approach tochronic disease

The American Rheumatism Association (ARA)criteria below are mainly used for researchand are less useful in routine clinical practice.

Clinicians must therefore be aware of theneed to investigate patients presenting withless specific symptoms and signs – typicallypain, stiffness and swelling in the joints thatis worse in the morning or after period ofinactivity.

Symmetrical swelling and tenderness of thejoints (particularly those of the hands orfeet) should suggest the need for furtherinvestigations.

The SIGN guidelines are most useful inguiding clinical practice26.

It should be noted that the ARA criteriabelow are not helpful in distinguishing thosepatients with early arthritis who may turnout to have RA from those who turn out tohave other forms of inflammatory arthritis59.

Appendix nine.Classification criteria forrheumatoid arthritis

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AMERICAN RHEUMATISM ASSOCIATION 1987 REVISED CRITERIA FOR THE CLASSIFICATIONOF RHEUMATOID ARTHRITIS60

Classification of rheumatoid arthritis requires four of the following seven criteria. In criteria oneto four the joint signs or symptoms must be continuous for at least six weeks.

Signs and Symptoms1 Morning stiffness

Duration more than 1 hour, lasting more than 6 weeks2 Arthritis of 3 or more joint areas

*Soft tissue swelling or effusion lasting more than 6 weeks3 Arthritis of hand joints

Wrist, metacarpophalangeal joints or proximal interphalangeal joints lasting more than 6weeks

4 Symmetric arthritis*At least one area, lasting more than 6 weeks

5 Rheumatoid nodulesAs observed by a physician

6 Serum rheumatoid factor As assessed by a method positive in less than 5% of control subjects

7 Radiographic changesAs seen on anteroposterior films of wrists and hands

* Possible areas: proximal interphalangeal joints, metacarpophalangeal joints, wrist, elbow, knee, ankle,metatarsophalangeal joints (observed by a physician).

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Appendix ten.Rheumatology services in Scotland– some relevant statistics

Argyll & Clyde 169 542 102 (62-161) 41 (21-82) 143 2093 726 2819

Ayr & Arran 155 394 92 (55-144) 37 (19-73) 129 1858 636 2494

Borders 48 656 27 (16-42) 12 (6-23) 39 531 184 715

Dum. & Galloway 66 620 37 (22-58) 16 (8-31) 53 725 254 979

Fife 140 716 83 (50-131) 34 (17-68) 117 1715 599 2314

Forth Valley 109 633 66 (40-104) 27 (14-53) 93 1365 477 1842

Grampian 202 470 121 (73-191) 50 (25-101) 171 2520 923 3443

Greater Glasgow 327 162 209(125-334) 81 (41-164) 290 4526 1538 6064

Highland 88 670 51 (31-79) 21 (11-42) 72 1006 360 1366

Lanarkshire 210 183 132(79-208) 51 (26-104) 183 2737 960 3687

Lothian 286 222 179 (107-285) 71 (36-144) 250 3855 1359 5214

Orkney 8 491 5 (3-7) 2 (1-4) 7 93 34 127

Shetland 8 523 5 (3-8) 2 (1-4) 7 103 40 143

Tayside 164 005 95(57-150) 40 (20-78) 135 1933 667 2600

Western Isles 12 335 7 (4-10) 3 (2-6) 10 132 49 181

Total 1 998 622 1211(728-1914)

488 (248-976) 1699 25192 8806 33998

Figure 1.

This shows estimates for incidence andprevalence in the adult population (withconfidence intervals in brackets) by genderand NHS Board area. It should be notedthat the prevalence estimates are

conservative and likely to underestimate thetrue figure. The population aged over 45 isalso shown since this is the population mostat risk of, and affected by, RA.

NHS Board Population45+

Expected number of new cases per yearxv

Female Male TotalExpected number of existing cases per yearxvi

Female Male Total

xv Figures (and 95% confidence intervals) obtained by applying NOAR revised age-specific incidence estimates 61 to mid-year populationestimates at 30th June 1999 by age sex and NHS Board (Registrar General for Scotland).

xvi Figures are calculated using NOAR estimates of minimum prevalence of 1.16 % in females and 0.44% in males aged 16 and over7.

53

Figure 2.

British Society for Rheumatology suggests1 whole time equivalent (WTE) per 85,000

populationxvii

Royal College of Physicians, World HealthOrganisation and Department of Health suggest

1 WTE per 150,000 population

England mean 1 WTE per 162,752 population

Wales mean 1 WTE per 183,689 population

Scotland mean (note: there is a wide variationby NHS Board area)

1 WTE per 213,300 population

This shows different recommendations maderegarding provision of consultantrheumatologists per head of population, aswell as figures for current average workforcelevels taken from the ARC-BSR Workforce

Register 2001. In general, Scotland has alevel of provision lower than the rest ofBritain and a wide range of levels ofprovision across NHS Board areas.xviii

xvii The justification for this can be found in the BSR publication , Musculoskeletal Disorders, Planning for the Patient’s Needs. No 3. A basis forplanning a rheumatology service. See especially Section 12.

xviii Dr McCarlie, Ayrshire and Arran NHS Board – personal communication.

54

BackgroundThere are no current working examples ofchronic disease management (CDM) modelsfor RA in Scotland. However, the evidencefrom recent research either shows, orstrongly suggests, that better outcome in RAcan be consistently achieved by:• early diagnosis and intervention • ‘tighter’ control and monitoring of disease • the multidisciplinary team approach• improved patient self-management skills• greater collaboration between the patient

and the healthcare team.

To maximise health gain it is thereforeessential to refocus the healthcare deliverymodel to translate these findings fromresearch into clinical practice.

The findings above are not exclusive to RA –they apply to a number of other chronicdiseases as well. Furthermore, differentmodels of healthcare delivery have beentried and in some cases tested for thesechronic diseases. This is especially the casefor diabetes. These models are collectivelyknown as chronic disease management. Ittherefore makes sense to consider existingmodels and how they can usefully beapplied or adapted to the care of RA.

Even if such models are used for RA then themain message must be re-iterated –all patients with suspected RA must bereferred as soon as possible for arheumatology opinion.

General features of the CDM modelsThe models are all centred on the patientand firmly rooted in primary care. However,they involve a team approach which spans anumber of organisations within and beyondthe health service. The ‘core’ team for each

individual will, at a minimum, involve thepatient and their GP, and in most cases therheumatologist, nursing, and paramedicalstaff. The ‘core’ team may ‘bring on’ theorthopaedic surgeon, social worker,pharmacist and other professionals ifnecessary, particularly for those with moresevere disease and disability. Thoseproviding user-led self-managementapproaches are now becoming moreintegrated with the teams and it is likely thatthey will be recognised as key players in duecourse. All the professionals form part of anextended care team which should be ledand managed by a lead clinician withappropriate management support.

The general features of the CDM models areas follows:• focus on outcomes• guided by evidence• collaborative working – patient as part of

the team• use of coordinated, planned and proactive

care• incorporating a population perspective.

A lot of these features are also seen inmanaged clinical networks.

Specific features of CDM model asapplied to rheumatoid arthritisAdapting the models to RA will depend to agreat extent on existing patterns of localservice. It is more important to see that theimproved outcomes are achieved than tospecify in fine detail the processes to achievethem. It is also important to make outcomemeasures relevant to the patient and theirquality of life. Suggested features includethe following:• patient-held individualised care plan

including

Appendix eleven.Chronic disease management model

55

- guidance on what to expect from care- guidance on how to ‘navigate’ the system- advice on medication, diet, exercise,

smoking, employment, benefits etc.(Something analogous to this hasalready been produced for the chronicdisease management of CHD and heartfailure in Glasgow).

• targeted case management (the team‘captain’)- in most cases GP coordinates care- in moderate cases rheumatology

specialist health professional with GPsupport

- in severe cases a rheumatologist incollaboration with an orthopaedicsurgeon

• regular reviews in primary care- overseen by GP- conducted by practice nurse, GP and

relevant therapist- involving community pharmacists in

medication review• regular reviews in secondary care• use of standards, protocols, guidelines (it

is important not to overburden peoplewith these – they should be integratedinto care plan)

• universal access to self-managementprogrammes

• structured effective consultations- shared goals, shared decision making- clarity and transparency- written and verbal feedback- action planning

• case registers- population, rather than clinic, based- integrated with care plan- outcome oriented- prompting call-back system- to improve:

> disease control/monitoring> quality improvement/audit> research and education

• assign larger responsibilities to non-medical members of team

• troubleshooting unexpected problems- role of rheumatology specialist health

professional- helpline/nurse-led clinics- source of advice to GP/line of contact

to consultant- educative role- role of community pharmacist

Experience from the implementation ofCDM, and similar programmes elsewhere,has shown the following to be important:• ‘buy in’ from GPs, commissioners, and

secondary care professionals• the need for sustaining momentum, after

initial implementation• adequate extra resources, including

administrative support• good project management.

Work is ongoing in Glasgow to constructsuch a model for RA.

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1. Martin, J, Meltzer, H, and Elliot, D. Theprevalence of disability among adults.OPCS surveys of disability in Great Britain.report 1. 1988. London, HMSO.

2. Hameed K, Gibson T. A comparison of theprevalence of rheumatoid arthritis andother rheumatic diseases amongstPakistanis living in England and Pakistan.British Journal of Rheumatology 1997;36: 781-785.

3. MacGregor AJ, Riste LK, Hazes JM,Silman AJ. Low prevalence of rheumatoidarthritis in black-Caribbeans comparedwith whites in inner city Manchester.Annals of the Rheumatic Diseases 1994;53: 293-297.

4. Steven MM. Prevalence of chronic arthritisin four geographical areas of the ScottishHighlands. Annals of the RheumaticDiseases 1992; 51: 186-194.

5. ISD Scotland. CMR Monthly Report.Issue 16. 2000.

6. Wiles N, Symmons DP, Harrison B, et al.Estimating the incidence of rheumatoidarthritis: trying to hit a moving target?Arthritis & Rheumatism 1999; 42: 1339-1346.

7. Symmons D, Turner G, Webb R, et al. Theprevalence of rheumatoid arthritis in theUnited Kingdom – new estimates for a newcentury. Rheumatology 2002; (In Press)

8. Young A, Dixey J, Cox N, et al. How doesfunctional disability in early rheumatoid

arthritis (RA) affect patients and their lives?Results of 5 years of follow-up in 732patients from the Early RA Study (ERAS).Rheumatology 2000; 39 : 603-611.

9. McEntegart A, Morrison E, Capell HA, etal. Effect of social deprivation on diseaseseverity and outcome in patients withrheumatoid arthritis. Annals of theRheumatic Diseases 1997; 56: 410-413.

10.Hamilton JD, Thomson EA, Porter D,Hunter JA, Madhok R, Capell HA. Lifestyleinfluences on outcome in rheumatoidarthritis. Scottish Medical Journal 2000;45: 137-139.

11.Pincus T, Callahan LF. Taking mortality inrheumatoid arthritis seriously-predictivemarkers, socioeconomic status andcomorbidity. Journal of Rheumatology1986; 13: 841-845.

12.Kitas G, Banks MJ, Bacon PA.Cardiacinvolvement in rheumatoid disease.Clinical Medicine 2001; 1: 18-21.

13.Maiden N, Capell HA, Madhok R,Hampson R, Thomson EA. Does socialdisadvantage contribute to the excessmortality in rheumatoid arthritis patients?Annals of the Rheumatic Diseases 1999;58: 525-529.

14.Royal College of General Practitioners,OPCS, and Department of Health andSocial Security. Morbidity statistics fromgeneral practice. Third national study1981-1982. 1986. London, HMSO.

References cited inthe appendices

57

15.McCormick A, Fleming D, and CharltonJ. Morbidity statistics from general practice.Fourth national study1991-1992. 1995.London, HMSO

16.Abdel-Nasser AM, Rasker JJ, ValkenburgHA. Epidemiological and clinical aspectsrelating to the variability of rheumatoidarthritis. Seminars in Arthritis &Rheumatism 1997; 27: 123-140.

17.Knutson K, Lewold S, Robertsson O,Lidgren L. The Swedish knee arthroplastyregister. A nation-wide study of 30,003knees 1976-1992. Acta OrthopaedicaScandinavica 1994; 65: 375-386.

18.Lambert CM. Medical therapy forrheumatoid arthritis – value for money?Rheumatology 2001; 40: 961-964.

19.Catford J. The mass media is dead: longlive multimedia. Health PromotionInternational 1995; 10: 247-251.

20.Barrett EM, Scott DG, Wiles NJ, SymmonsDP. The impact of rheumatoid arthritis onemployment status in the early years ofdisease: a UK community-based study.Rheumatology 2000; 39: 1403-1409.

21.Department of Health. The Expert Patient:A New Approach to Chronic DiseaseManagement for the 21st Century. 2002.London, Department of Health.

22.Scottish Executive Health Department.Patient Focus and Public Involvement.2001. Edinburgh, Scottish Executive.

23.Gray EA, Cho MP, Cush J, Kavanaugh AF,Lipsky PE. An evidence-based medicineapproach to the diagnosis andmanagement of musculoskeletalcomplaints. American Journal of Medicine1997; 103: 3S-6S.

24.NHS Centre for Reviews andDissemination. Getting research into practice.Effective Health Care 1999; 5: 1-12.

25.Davis DA, Thomson MA, Oxman AD, et

al. Changing physician performance: asystematic review of the effect ofcontinuing medical education strategies.JAMA 1995; 274: 700-705.

26.Scottish Intercollegiate GuidelinesNetwork. Management of earlyrheumatoid arthritis. 48. 2001.

27.NHS Centre for Reviews andDissemination. Costs, outcomes, andpatient satisfaction by provider type forpatients with rheumatic andmusculoskeletal conditions: a critical reviewof the literature and proposedmethodological standards. Database ofAbstracts of Reviews of Effectiveness2001; 1.

28.Von Korff M, Gruman J, Scaefer J, CurryS, Wagner EH. Collaborative managementof chronic illness. Annals of InternalMedicine 1997; 127: 1097-1102.

29.Stewart M, Brown JB, Weston WW,McWhinney IR, Freeman TR, McWilliamCL. Patient-centered medicine. NewburyPark,CA.: Sage, 1995.

30.Ramos-Remus C, Salcedo-Rocha AL,Prieto-Parra RE, Galvan-Villegas F. Howimportant is patient education? BestPractice & Research in ClinicalRheumatology 2000; 14: 689-703.

31.Center for Reviews and DisseminationReviewers. Efficacy of multidisciplinaryteam care programs in rheumatoidarthritis. Database of Abstracts of Reviewsof Effectiveness 2002; Issue 1, December2002.

32.Madigan A, FitzGerald O. Multidisciplinary patient care inrheumatoid arthritis: evolving concepts innursing practice. Baillieres ClinicalRheumatology 1999; 13: 661-674.

33.BMJ Publishing Group. Clinical Evidence.London: BMJ Publishing Group, 2001.

58

34.Rorabeck CH, Bourne RB, Laupacis A, etal. A double-blind study of 250 casescomparing cemented with cementless totalhip arthroplasty. Cost-effectiveness and itsimpact on health-related quality of life.Clinical Orthopaedics & Related Research1994; 156-164.

35.Ernst E. Usage of complementary therapiesin rheumatology: a systematic review.Clinical Rheumatology 1998; 17: 301-305.

36.Reilly D. Enhancing human healing. BMJ2001; 322: 120-121.

37.Ader R, Cohen N, Felten D.Psychoneuroimmunology: interactionsbetween the nervous system and the immunesystem. Lancet 1995; 345: 99-103.

38.Masek K, Petrovicky P, Sevcik J, Zidek Z,Frankova D. Past, present and future ofpsychoneuroimmunology. [Review] [57refs]. Toxicology 2000; 142: 179-188.

39.Ader R. On the development ofpsychoneuroimmunology. EuropeanJournal of Pharmacology 2000; 405:167-176.

40.Mercer SW, Watt GC, Reilly D. Empathy isimportant for enablement. BMJ 2001;322: 865

41.Mercer SW, Reilly D, and Watt. Theimportance of empathy in the enablementof patients attending the GlasgowHomeopathic Hospital. GCM BritishJournal of General Practice 2002;52:901-905.

42.Ernst E. (Editor) The desktop guide tocomplementary and alternative medicine:an evidence based approach. HarcourtPublishers, London 2001. ISBN:0723432074.

43.Linde K, Clausius N, Ramirez G, et al. Arethe clinical effects of homeopathy placeboeffects? A meta-analysis of placebo-

controlled trials. [erratum appears inLancet 1998 Jan 17;351(9097):220.].Lancet 1997; 350: 834-843.

44. Jonas WB, Linde K, Ramirez G.Homeopathy and rheumatic disease.Rheumatic Diseases Clinics of NorthAmerica 2000; 26: 117-123.

45.Fisher P, Scott DL. A randomizedcontrolled trial of homeopathy inrheumatoid arthritis. Rheumatology 2001;40: 1052-1055.

46.Scottish Intercollegiate GuidelinesNetwork. Cardiac Rehabilitation. 2002.

47.Van Den Ende CH, Vliet VT, Munneke M,Hazes JM. Dynamic exercise therapy forrheumatoid arthritis. Cochrane DatabaseSyst Rev 2000; CD000322

48.Hall J, Skevington SM, Maddison PJ,Chapman K. A randomized and controlledtrial of hydrotherapy in rheumatoidarthritis. Arthritis Care & Research 1996;9: 206-215.

49.Drummond MF, Jefferson TO. Guidelinesfor authors and peer reviewers of economicsubmissions to the BMJ. The BMJEconomic Evaluation Working Party. BMJ1996; 313: 275-283.

50.Verhoeven AC, Boers M, Tugwell P.Combination therapy in rheumatoidarthritis: updated systematic review.British Journal of Rheumatology 1998;37: 612-619.

51.Anis AH, Tugwell PX, Wells GA, Stewart DG.A cost effectiveness analysis of cyclosporine inrheumatoid arthritis. Journal ofRheumatology 1996; 23: 609-616.

52.Lambert CM, Hurst NP. Health economicsas an aspect of health outcome: basicprinciples and application in rheumatoidarthritis. British Journal of Rheumatology1995; 34: 774-780.

53.Lambert CM, Hurst NP, Forbes JF,

59

Lochhead A, Macleod M, Nuki G. Is daycare equivalent to inpatient care for activerheumatoid arthritis? Randomisedcontrolled clinical and economicevaluation. BMJ 1998; 316: 965-969.

54.Lorig KRD. Chronic Disease Self-Management Program: 2-Year Health Statusand Health Care Utilization Outcomes.Medical Care 2001; 39: 1217-1223.

55.CRAG. Scottish Single-handedRheumatology Audit. CA91/34. 1994.Edinburgh, CRAG.

56.Gabriel SE, Crowson CS, O'Fallon WM.Comorbidity in arthritis. Journal ofRheumatology 1999; 26: 2475-2479.

57.Vliet Vlieland TP, Breedveld FC, Hazes JM.The two-year follow-up of a randomisedcomparison of inpatient team care androutine outpatient care for activerheumatoid arthritis. British Journal ofRheumatology 1997; 36: 82-85.

58.Hehir M, Hewlett S, Mitchell K, Kirwan J,Memel D, Pollock J, and Bennett B. Whathappens in rheumatoid arthritis (RA) out-patient clinics? 2001. ConferenceProceeding

59.Symmons D. 2002. PersonalCommunication

60.Arnett FC, Edworthy SM, Bloch DA, et al.The American Rheumatism Association1987 revised criteria for the classificationof rheumatoid arthritis. Arthritis &Rheumatism 1988; 31: 315-324.

61. Wiles N, Symmons DP, Harrison B, et al.Estimating the incidence of rheumatoidarthritis: trying to hit a moving target? Arthritis& Rheumatism 1999; 42: 1339-1346.

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