1. Issue 34 January 2012Please note: Opinions expressed in this newsletter are the views of the author, and are not attributable to the Lancashire LINK.

2. WORLD LEPROSY DAY 2012 JANUARY 29 ONE BODY... Many members World Leprosy Day We will not turn away In times of despair. We will come near, walk alongside. We will care...WWW.LEPRAHEALTHINACTION.ORG

3. Contents 3 6Editorial 4 The LINk and Local Healthwatch.LINk News 7 5 Signs of the times? Summary of Transport Survey 2010. 6 NHS 111 service. 7 BMA seeks confidentiality assurances over patient data. 8 Board Member profile. Night-time Hours Service changes. 9 Patient Stories. UHMBT Hospital Appointments. 12 8 Shock report reveals human rights abuse. 13 Health and Social Care Update Number Four. The Dilnot Proposals on Funding of Care Services. 14 Counting the cost of care. 16 Counting the cost of care - Patients stories. 17 Cancer patients hit by return to work proposals.Out-and-About 12 10 Out-and-about with the LINk. 17 19 20Features 18 Lancashire Hospital trusts feature in highest death rates. 19 Is your care up to standard? 20 999 Call Categorisation.

4. Editorial LINk News Out-and- Features News 4 5 about 10 18 214 EditorialThe LINk We hope to keep you informed as things takes shape.and Local HealthWatch In the meantime, we are happy to answer some commonly asked questions:As many LINk members will be aware, underthe Governments health and social care Will Local HealthWatch be the same as the LINk?reforms, the LINk will be replaced by newLocal HealthWatch organisations in October Local HealthWatch organisations will carry on2012. with all the involvement and scrutiny activities ofThe new Health and Social Care Bill states that the LINk, including promoting involvement;Local HealthWatch organisations will be the local obtaining views; monitoring health and careconsumer champion across health and social services; making reports and recommendations;care. and carrying out enter and view visits.But the proposals have prompted many questions However, Local HealthWatch will have severalfrom LINk members who have asked what will extra duties, including providing information tohappen to the LINk over the next few months, and support patients to make choices about theirhow will the changes take effect. health or social care and providing, or signposting people to NHS complaints advocacy services. AsWe are happy to reassure our members that the well as this, the Government states that thereLINk will still be carrying out its activities as usual must be a Local HealthWatch representative onover the next few months. That means we will still the newly established Health and Wellbeingbe dealing with your issues and concerns around Boards.health and social care, and feeding these tocommissioners and managers within the NHS and What sort of organisation will Local HealthWatchLancashire County Council. be?We will still be keeping you informed of ongoing The Government proposes that Localdevelopments concerning national and local HealthWatch will not be a network organisationhealth policies, via our newsletter and other in the way that the LINk is. Instead it will be abulletins, and inviting your responses. body corporate. This is a legal term which simply means it would be constituted as an organisationWe will still be organising events and conferences in its own right, with its own constitution andto provide people with the opportunity to have arrangements for making decisions in antheir say on health and social care. accountable way.And we will still be keeping our band of trained This is likely to mean Local HealthWatch wouldvolunteers busy as they undertake enter and view be set up in the same way as many local charitiesvisits to care homes and health settings, or carry and voluntary organisations. The governmentout mystery shopping. sees this as a way of making sure that Local HealthWatch is really independent andHowever, at the same time, we hope to provide answerable to local people.information on developments around Local However, there will still be an important role forHealthWatch, as they arise, and will also be patients, service-users and those interested inhelping to support the promotion and roll-out of championing health and social care to becomeLocal HealthWatch within Lancashire. involved in Local HealthWatch.Lancashire County Council is taking the lead on The role of local Local HealthWatch will bethe development of a Lancashire Local overseen by HealthWatch England, a nationalHealthWatch and discussions are currently taking healthwatch organisation.place on the structure of this new organisation.

5. Editorial LINk News Out-and- Features News 4 5 about 10 18 21 LINk News 5Signs of the times? attendant directed me to one of stress of trying to park their car, the car parks, but I couldnt find a finding where they need to be car parking space. going, or finding enough moneyDo hospital direction signs put for car parking.you in a spin? Does trying to Because all the direction arrowsfind an empty hospital parking were pointing one way, I followed I realise there are no easyspace drive you to distraction? them all the way to the end only answers to this, but are thereIf so, the LINk would like to to be met by a ticket barrier. But I ways hospitals could come uphear from you. didnt have a ticket because I with more imaginative solutions: hadnt parked and there was a staggered visiting hours,We would love to hear your views queue of irate drivers behind me, perhaps? Better advertising andon which of the regions hospitals waiting to come out! promotion of public transport? Afare best and worst when it realistic maximum charge so thatcomes to parking and direction I had to somehow manoeuvre my family members who need to staysigns. car and backtrack to find a car with their loved ones are not parking space, which I did penalised with a hefty parkingAs anyone who has to visit a eventually. But I was miles away bill?patient in hospital, or attend from the maternity unit. By thishospital as a patient or outpatient, time, I was feeling really hot What are your experiences ofwill readily testify, visits can be under the collar, anxious to see hospital signs and car parking?fraught with tension and anxiety my daughter-in-law and Which hospitals fare the best andat the best of times. Trying to find grandson. worst in relation to parking? Thewhere you are going or LINk would love to hear yoursomewhere to park can send The day before, my daughter-in- views and experiences. Contactstress levels soaring even higher. laws mother had driven up from angelan@theBHA.org.uk her home in Reading, arriving atLINk news editor and community lunchtime, to spend the full day atengagement officer Angela Norris the hospital. When she got to herhad this experience when she car later that night, she wasvisited Royal Preston Hospital dismayed to find she had beenrecently to see her daughter-in- charged 10 to park for the day.law and new grandson, Stanley. Commented Angela: ManyAngela recalled: It was afternoon people who visit hospital mayvisiting and I queued for what have concerns and worries aboutmust have been 20 minutes to get the patients they are going to see,on to the hospital site. A car park without having the additionalSummary of Transport Survey 2010Research by Lancaster-based One Voice Disability Forum reveals that most people with disabilities relyon buses for transport and find them affordable, reliable and comfortable.However, nearly half of those interviewed said they needed help when travelling and pointed to problems withramps as an area of concern.Wheelchair users said some bus drivers did not know how to use the ramp, or were reluctant to get out of theirseat to lower the ramp. Other users reported that some drivers were not aware the bus could be lowered to thekerb. Problems were exacerbated by unhelpful drivers and, as a result, many wheelchair users no longer usedbuses.The research also discovered that taxis are a popular form of travel for disabled people and most taxi driversare responsive to their needs. However, some taxis do not have straps to secure a wheelchair and manypeople reported difficulties in booking a taxi at peak times.The report calls for more information on public transport services to be available in large print. For a copy of thereport email one-voice@btconnect.com

6. Editorial LINk News Out-and- Features News 4 5 about 10 18 216 LINk News advisor will ask you questionsNHS 111 service about your symptoms and, based on the answers youThe NHS 111 service is there to give you give, they will give you adviceadvice if you think you have an urgent health on which service is the best forneed, but you are not sure what to do. you, based on where you live and the closest serviceAs reported in the November newsletter, 111 is the available. If the call advisornumber for a new free to use telephone service thinks you need emergencywhich gives advice on which service to use if you attention they can immediatelyhave a minor injury or illness that needs medical dispatch an ambulance.attention but is not an emergency.If you are feeling unwell or have an injury, it can be 999 remains the single number to call if you ordifficult to know which NHS service to use, someone you care for has a serious or lifeespecially if you have a number of different threatening health emergency such as a seriousservices in your area such as a walk-in centre, a accident, a heart attack, a stroke or breathingminor injuries unit or urgent care centre as well as problems.your local high street pharmacy, your GP and If you have used 111 since it was introduced wehospital. would be interested to hear your thoughts. PleaseCalling 111 gives you access to a trained call contact lancashirelink@thebha.org.uk or calladvisor, who has information about the different 01772 431195.services available to you in your area. The call Together we can keep Lancashire moving this winter

7. Editorial LINk News Out-and- Features News 4 5 about 10 18 21 LINk News 7BMA seeks confidentiality assurances over patient dataThe BMA has warned the Nathanson, head of science and ethicsGovernment that they must ensure at the BMA said: Whilst the BMA doespatient confidentiality is protected believe the use of anonymised healthin light of the Prime Ministers data could benefit patients, we areannouncement that patient records concerned that elements of thewill be made available to the Governments proposals could, ifprivately run life sciences industry implemented, undermine patientfor research purposes. confidentiality.The NHS Health and Social Care She said the BMA was particularlyInformation Centre is to set up a worried that researchers from largesecure data linkage service by commercial companies would be able Dr VivienneSeptember, 2012. This will provide to access patient records, find out Nathansonextracts from patient data to life about peoples health status andsciences businesses for research, treatment, and then may try to contactincluding research into drugtreatments.David Cameron this week assured thepublic that any records would remain them. In response, a Department of Health spokesman said: The data will be Whilst the BMA does believeanonymous, claiming this doesnt stored electronically and linked when the use of required to meet a specific health anonymisedthreaten privacy and patients could question. This means the data the health dataopt out of having their data shared. researcher receives will be only that isPatients will also have access to their relevant to the research. could benefitGP records by 2015, with details of the patients, we *Article from The Pulse, the journal for are concernedfull timetable to be published by the BMA -http://www.pulsetoday.co.uk/September 2012. newsarticle-content/-/ that elementsThe Department of Health plans to article_display_list/13153083/bma- of theannounce a consultation to change the raises-alarm-over-nhs-patient-data- GovernmentsNHS Constitution so that patient data sharing-plans proposalsis automatically included in clinical could, if What do you think about theresearch, but giving patients a clear implemented, Governments plans to share patientopportunity to opt-out if they wish todo so. data with the research industry? Will undermine they compromise patient patientHealth secretary, Andrew Lansley, confidentiality? How will patients be confidentiality.said: What we are talking about is not informed of their right to opt out? patients individual medical records. Email the Lancashire LINk with yourWhat were talking about is linking up views: lancashirelink@theBHA.org.ukall the data sets across the NHS tocreate what is population-based dataabout the success of new treatmentsacross the NHS and the ability to linkup research data with the data abouthow patients are responding inresearch trials.But the BMA raised concerns overpatient confidentiality. Dr Vivienne

8. Editorial LINk News Out-and- Features News 4 5 about 10 18 218 LINk News Night-time hoursBoard member Can you name your favourite service changesprofile book? Not really. There are too many, Burnleys night-time out of hours but Sophies World by Jostein doctors service has been movedName: Gaarder is one. I almost never from the St Peters Centre inMichael Swarbrick go to the cinema without falling Burnley to Burnley GeneralJob title: asleep. Hospital. As part of a trial run overVice-chair the winter months, GPs will be Can you tell us one fact about based at the urgent care centreWhich area do you work in or yourself that others might be from midnight until 8am eachrepresent? surprised to hear? night.I am interested in the changes Although I was physically This will be the only change to theto the structures of Health and disabled at birth, at the age of service at St Peters, which willSocial Care because I can 18 I was called into the army continue to operate as normal atremember what it was like and served 2 years in the all other times.before the foundation of the RAMC. (Well, the Korean WarNHS. It would be good if the Health bosses said the scheme was on. If you were male, couldNHS survived for my would test whether it is feasible to stand up and didnt have flat feet run both services together on agrandchildren. you were in.) permanent basis in the future.How long have you been Information from NHS Eastinvolved with the LINk? Lancashire shows a low take-upSince it began. of people using the serviceWhat brought you to the between midnight and 8am, averaging at fewer than twoLINk? patients per evening.The NHS keeps me alive. I oweit something. It is felt that by co-locating the GP out of hours service with urgentWhat do you feel are the care services at Burnley Generalstrengths of the LINk? Hospital this will ensure thatIt strives to be the independent patients receive the rightvoice of patients and ordinary treatment from the right doctormembers of the public. It has no however they access the service.reason not to tell the truth as The GP out of hours servicepatients see it. operates as an appointment-Can you tell us a little bit based service where patients canabout your career call the new 111 service whenbackground? their GP practice is closed. The 111 service assesses patientsI left school at 15. On the way to and determines whether thea career in education I worked patient needs to attend an urgentfor two breweries and improved care centre or see an out of hoursmy education in my spare time. I GP. Where a patient needs to seetook full advantage of the fact a GP out of hours they will bethat in those days a part time given an appointment over theuniversity education was phone and advised where toaffordable but I was an old attend, thereby avoiding anystudent by the time Lancaster confusion where a patient needsawarded me a Ph.D. to go for treatment.What are your hobbies and If you have had to use the serviceinterests outside of work? since the changes wereMy grandchildren. implemented and would like to share your experience with us please contact karend@thebha.org.uk

9. Editorial LINk News Out-and- Features News 4 5 about 10 18 21 LINk News 9Patient Stories internal training, but may be simply written if respondents prefer.Do you know of anyone aged over 65 who Oakridge is looking for a mix of patientmight be willing to talk about their experience experiences, good, bad or indifferent, so all storiesof being a patient of Lancaster Royal Infirmary, are welcome. Each will be edited down to aWestmorland General Hospital or Furness maximum of 10 minutes so respondents need notGeneral Hospital, during the last 12 months? necessarily have long, complex stories to tell, and the more stories that are collected the better.On behalf of University Hospitals of Morecambebay NHS Foundation Trust, Oakridge has been Experienced interviewers are happy to travel tocommissioned to collect 100 stories from people, peoples homes, or to a hospital or venue of theiraged over 65, who have been patients of choice at a time to suit them. The interviewer willLancaster Royal Infirmary, Westmorland General be accompanied by one technical person to recordHospital or Furness General Hospital, during the their story. Each interview will be carried out withlast 12 months. sensitivity.The purpose is to improve the standard of elderly For further information, call Julia or Jo on 01625patient care. Stories would ideally be filmed or 572474 or emailvoice-recorded, so that they can be used for Julia.hatherall@oakridgecentre.co.ukUniversity Hospitals of Morecambe Bay NHS Foundation TrustHospital AppointmentsThe University Hospitals of Morecambe Bay NHS having a suspicion or diagnosis of cancer, being inFoundation Trust (UHMBT) has set up a helpline need of an urgent referral, or simply requiring afor patients worried about follow-up appointments routine referral.following problems with the outpatient booking Since then, the Trust has identified 154 patients assystem. having a suspicion or diagnosis of cancer and asAn external review commissioned by the Hospital being at risk of harm due to delays in diagnosis orTrust identified a backlog of 30,000 patients treatment. A further 682 patients were identified aswaiting for urgent and routine appointments. being in need of urgent referral. Measures were put to place to ensure that each of these patientsThe problems with the outpatient booking system was seen by the beginning of December.originally thought to be due to the IT system have now been put down to process failure. Fears For routine patients, a process of clinical validationwere raised in the media concerning cancer is underway and these patients will be seen overpatients losing out on vital diagnosis and treatment the coming months. The Trust is looking at thedue to urgent follow up appointments being missed wider NHS and possibly the private sector foror delayed support in dealing with routine cases.Since the issue emerged, the Trust has acted Patients and relatives worried about appointmentsswiftly to ensure all urgent and priority patients are can call the 24-hour helpline on 0845 608 0278.seen (reported in LINk newsletter, November GPs are also being asked to report any patients2011). they are concerned might not have received appointments.Hospital managers have put in place a process toidentify all patients who should have received a The Trust is to set up a booking hub made up offollow-up appointment but havent; those who have managerial, clinical and administrative staff - tobeen given an appointment but have not yet been review outpatient demand and identify staffingseen; and those whose records should be closed issues, in order to prevent the situation arisingas completed. again.Patients were further categorised on the basis of

10. Editorial LINk News Out-and- Features News 4 5 about 10 18 2110 Out and About with the LINk We will keep you updated with Urgent Care Centre at BurnleyEast progress. General Hospital. We continue our work with If you have feedback on these children and young people. or any other services you haveFollowing on from the Dementia Their experience of accessing used recently please contactLarge Scale Change health services is an important either Anthony or Karen onconference in Manchester in part of shaping services. At a 01282 714384 / 01282 714385November, Board members in meeting of Rossendale Youth or emailEast Lancashire have agreed to Council in November, there was Anthony@thebha.org.uk orlook at the use of antipsychotic an open and honest discussion karend@thebha.org.ukdrugs for people with dementia. about what they expect ofThis corresponds with a call to services and the staff whoaction on the use of provide and support thoseantipsychotic drugs for people services.with dementia, launched by the Areas covered includedDementia Action Alliance. The dentistry and how the group feltaim of this is to ensure that: they needed reassurance fromAll people with dementia who the dentist, i.e. what wasare receiving antipsychotic happening whilst being treated. 01/01/2012 - 31/01/2012drugs should receive a clinical Communication was another of Love Your Liverreview from their doctor to the main themes, with theensure that their care is majority of the group feeling that 04/01/2012 - 04/01/2012compliant with current best communication could be World Braille Daypractice and guidelines, and that improved. Included in this wasalternatives to medication have the need of health practitioners 14/01/2012 - 14/01/2012been considered, by 31 March to communicate with younger STIQ Day2012. people in a way that they could understand what was being 19/01/2012 - 19/01/2012In some cases the use of explained. Personalised Health Care:antipsychotic drugs is the right We would like to thank the youth Theory to Practicetreatment option, but it isestimated that around two thirds leader and members of the Youth Council for their warm 22/01/2012 - 28/01/2012of the use of antipsychotics in welcome and for allowing us to Cervical Cancer Preventionpeople with dementia is join their meeting. Weekinappropriate. The use ofantipsychotic drugs is linked to In the New Year, we will be arranging to meet with students 23/01/2012 - 29/01/2012serious side effects, creating at colleges in East Lancashire Food Allergy andmobility problems, sedation and and also meeting with health Food Intolerance Weeksometimes death, particularlywhen used for longer than 12 professionals who work with children and young people. 23/01/2012 - 29/01/2012weeks. Be Loud! Be Clear! Two areas that we will be monitoring over the next few 29/01/2012 - 29/01/2012 months are the new non World Leprosy Day emergency number 111 that gives advice on which service to 31/01/2012 - 31/01/2012 use if you have a minor injury or National Bug Busting Day illness that needs medical attention but is not an 31/01/2012 - 31/03/2012 emergency, (see page 6) and National Bowel Cancer the GP out of hours pilot which Symptom is trialing moving the night time Awareness Campaign GP from St Peters Centre to the

11. Editorial LINk News Out-and- Features News 4 5 about 10 18 21 Out and About with the LINk 11Central The LINk attended the Lancashire Third Sector Mental Health Consortium meeting in Preston, when there was a series of presentations on dementia. The Charnley Fold Enhanced Day Support Service featured twice forThe LINk attended the Chorley & South Ribble Mental its work in general towards therapeutic and socialHealth Users and Carers Network meeting, when a actives. Charnley Fold is also the base for the Dementiadiscussion took place around the concerns many carers Adviser Service supporting people with onset or aof mental health users have in relation to the possible diagnosis of dementia.withholding of information by clinicians. Staff providingcare do not always give carers information, citing Staff also attended the Lancashire Youth Council Openpatient confidentiality as their reason for withholding Evening and had an opportunity to find out more aboutinformation on certain issues. However, relatives feel its campaigns and meet the young volunteers.this not always in the best interests of the patient. If you A meeting on the future of Community/Volunteer Cars inwould like to comment on this issue, please contact the Preston took place. Although primarily a meeting forLINk - this could be done anonymously if preferred. Lancashire County Councils Transport Team and theEmail Pat at pat@theBHA.org.uk managers of the services under discussion, the LINkLINk members from Central Lancashire received enter asked if membership of this group could be opened upand view training to enable them to visit health and to other organisations. As a result, a representativesocial care premises. We will be reporting on their from the Royal National Institute for the Blind has beenactivities in future editions of this newsletter. invited to join the group, as an organisation which has a particular interest in how transport changes affect theThe LINk hosted an information stall in the entrance of visually impaired.the Civic Centre in Leyland. LINk staff attended theMethodist Church Cafe on Turpin Green in Leyland with The LINk will be attending the Chorley Communitya stand and information. A coffee morning is held there Transport Meeting on Thursday January 12. Onevery Wednesday and the LINk had the opportunity to Thursday January 26, LINk staff will be present at twospeak with people who had come along for coffee and events: the Preston Strategic Partnership Conference ina chat or lunch. Some of the issues raised included the morning and the Chorley Voluntary Communitytransition of care home services following the collapse Faith Sector meeting at St Josephs, Harpers Lane inof Southern Cross and mental health community service the afternoon.provision.In the North, a report, written by LINk team leaderElham Kashefi, on the problems experienced by NorthPolish migrants from Lancaster and Morecambewhen accessing health services, has been presented completion of the prison project, on-going work withto the University of Morecambe Bay NHS Foundation children and young people, and keeping a watchingHospitals Trust, NHS North Lancashire and the brief on mental health in-patient services.Lancaster, Morecambe, Carnforth and GarstangClinical Commissioning Group (CCG). Future work includes keeping a watch on developments relating to the Dementia Strategy,The report highlights serious concerns over developing stronger links with the North Westtranslation services and makes a number of Ambulance Service (NWAS), undertaking enter andrecommendations for ensuring non English speaking view visits to care homes and keeping a watch onPolish residents are supported when visiting hospital developments relating to the future of hospitals onor healthcare settings. For full details of the report the Fylde Coast.and recommendations see the next LINk newsletter(February 2012). DATE FOR YOUR DIARY Lancaster, Morecambe, Carnforth and GarstangAt a Christmas get-together meeting of the North Clinical Commissioning Group Public Engagementlocality group, members celebrated progress made Dayover the past 12 months and discussed the areas of Thursday 23 Febraury 2012 10 - 1work for the coming months. Positive aspects of our PCT Headquarters, Moor Lane Mills, Lancasterwork included training a number of LINk volunteers to The CCG will update us on progress withundertake enter and view visits and mystery commissioning so far and would like to hear fromshopping, working alongside hospital staff to conduct residents in all the areas that are covered by thean A&E audit at the Royal Lancaster Infirmary, Group. To book a place please contact the Northorganising health and social care events, the locality team (details on the back of the newsletter).

12. Editorial LINk News Out-and- Features News 4 5 about 10 18 2112 LINk NewsShock report reveals Neglect due to tasks in the calls for more information and care package not being advice to be made available tohuman rights abuse carried out, often caused by those who use home care lack of time. services.A hard hitting report into the Financial abuse, for example The report can be found at:care older people receive from money being systematically www.equalityhumanrights.com/home care services uncovers stolen over a period of time. homecareinquirythe shocking catalogue of Chronic disregard for olderabuse individuals may have peoples privacy and dignityreceived at the hands of those when carrying out intimatepaid to look after them. tasks.The report, Close to Home, was Talking over older peoplewritten following an Inquiry into (sometimes on mobileOlder People and Human Rights phones) or patronising them.carried out by the Equalities and Little attention given to olderHuman Rights Commission peoples choices about how(EHRC). It points out that and when their home care isindividuals are having their basic delivered.human rights breached by failings Risks to personal security, forin the care system. example when care workersThe Lancashire LINk was among are frequently changed,the many individuals and sometimes without warning.organisations that contributed to Some physical abuse, suchthe inquiry. We submitted a copy as rough handling or usingof our report, Who is Looking unnecessary physical force.After Uncle Albert?, following The EHRC states that many ofresearch with over 40 care these incidents amount to humanservice users and their family rights breaches. The impact onmembers. older people can be profoundlyThe findings from the EHRC depressing and stressful, *Following the publication of theshare many similarities with those resulting in tears, frustration, report, the Care Qualityuncovered in the LINk report, in expressions of a desire to die and Commission (CQC) hasidentifying wide-ranging concerns feelings of being stripped of self- announced that it will now beraised by service users and family worth and dignity. inspecting home care providersmembers. alongside care homes, hospital The report argues that theThe EHRC report states that underlying causes of these wards and other health settings.around half of the older people, practices are largely due to CQC chief executive Cynthiafriends and family members who problems within the care system Bower said: "The operation ofgave evidence to the inquiry rather than the fault of individual home care is not as transparentexpressed real satisfaction with care workers and reflect a failure as care in hospitals and othertheir home care. At the same to apply a human rights approach sectors because the interactionstime, the evidence revealed many to home care services. happen behind closed doors.instances of care that raised real "That is why we want to focus on It makes a number of this sector of social care in thisconcerns such as: recommendations, including way." Older people not being given making sure that home care The CQC already runs routine adequate support to eat and agencies are covered by the spot checks, but this will be an drink (in particular those with Home Rights Act, in the same extra inspection. dementia) and an unfounded way that care homes are, and belief that health and safety making sure those who restrictions prevent care commission and monitor home workers from preparing hot care services apply the Human meals. Rights Act in their work. It also

13. Editorial LINk News Out-and- Features News 4 5 about 10 18 21 LINk News 13Health and Social Care Update Number FourThe Dilnot Proposals on Funding of Care ServicesIn this update, we focus on the Dilnot Inquiry on the funding of social care services. Economist Andrew Dilnot was asked by theCoalition Government to chair the Commission on the Funding of Care and Support, which was set up to investigate ways offunding social care in the future.Dilnot was asked to lead the Commission and his report, Fairer Care Funding, was published in July this year. The informationhere comes from a briefing paper produced by the National Pensioners Convention (NPC).The Commission believes that the current care system is not fit for purpose and needs urgent reform. It has identified a number ofproblems: The current system is confusing, unfair and unsustainable. Eligibility for support varies depending on where you live. There is a lack of financial products to help people meet their care costs.Following the review of current services, Dilnot made a number of recommendations:1. Costs An individuals contribution to their care costs would be capped at between 25,000 and 50,000. The Commission suggests 35,000 as the fair figure. The state would then pay additional care costs once the individual had met that cap. However, individuals will still have to pay more than 35,000 if they want to go into a home which costs more than the local authority is prepared to pay. Means-tested support for residential care would be available to those with assets/income worth between 14,250 and 100,000 (including the value of any property). The current figure is 23,250. For those with assets worth 75,000 the cost of care would be around 15,000. Those with less than 14,250 would not pay any care costs. Those in residential care would still be liable to pay for their food and accommodation costs capped at a maximum of 10,000 per year. This would mean individuals paying up to 190 a week. Individuals could fund their care either through private insurance, savings or money from their estate by selling their property or through equity release. Whilst some local authorities promote deferred payment schemes which recoup the money paid for care after the property is sold, the Commission recommends the system be standardised across England. They also suggest that for the first time local authorities should be allowed to add interest onto the amount owed. The Commissions proposals are estimated to cost 1.7bn a year rising to 3.6bn by 2026. The recommendations suggest that this money could be raised either through additional income tax, re-allocation of existing government expenditure or using a specific tax such as national insurance on those aged 65 and over.2. Assessment There should be a new national assessment system which would guarantee support to those with substantial needs or worse but not anyone with moderate needs (including those requiring help getting in and out of bed). This assessment would be portable and apply if you moved from one area to another.The report adds that existing universal disability benefits should continue as now, but Attendance Allowance should be re-brandedto clarify its purpose. There is no recommendation to pay the carers allowance to those over state pension age.National Pensioners Convention (NPC) analysisThe NPC has highlighted a number of areas where the Dilnot Commissions recommendations have fallen short of theexpectations of older people, their families and carers. These include the following: Raising the threshold on assets to 100,000 before being liable to pay care costs will not prevent older people from still having to sell their homes in order to pay for care. The Commission accepts that the average housing wealth for a single pensioner is 160,000. Introducing a cap on care costs of 35,000 amounts to just over one years worth of care in a nursing home. The Commission estimates that a years residential care costs 28,600. However, only a quarter of all over 65s are likely to ever need care that costs more than the capped amount. Given this, it is questionable whether the state would ever step in to pay any additional costs in all but a minority of cases. Suggesting that additional funding for care could be found by making older people pay national insurance places an unacceptable burden on a single generation - rather than sharing the cost of care across society as a whole. It would be the only area of welfare provision where one section of society was paying for itself eg. older people paying for the care of older people, rather than the costs being shared across the population as a whole. Introducing a higher threshold of need before someone can access care will leave hundreds of thousands of vulnerable older people without any support in the community. Access to care services needs to be widened, rather than restricted in this way. The removal of low level support will inevitably lead to a worsening in conditions which will accelerate more severe care needs and higher costs.Dot Gibson, NPC general secretary said: "The Dilnot Report has really created more heat than light when it comes to the socialcare debate. Nothing in the recommendations will end means-testing, improve standards or prevent people from still having to selltheir homes to pay for care. The current care system is in crisis, yet these recommendations wont go anywhere near putting thatright.The Dilnot proposals are being used to inform a White Paper on social care, expected next Spring. Any proposals would not beintroduced until 2014 at the earliest.*As the LINk newsletter went to press, it was reported in the national media that the reforms outlined by Dilnot may take 10 to 20years to come into effect, due to the high costs needed to implement the proposals. An article in the Guardian news web pagesays the Government would need to find 1.7 billion to fund the scheme.

14. Editorial LINk News Out-and- Features News 4 5 about 10 18 2114 LINk NewsCounting the Cost of Care including imposing a cap on the amount of money people have to pay for their care to between 25,000 and 50,000; raising the threshold forFunding cuts and changes to care services are liability towards care costs to 100,000 (currentlyhaving a devastating impact on carers. This those with assets worth more than 23,000 arewas the powerful and emotive message to required to pay towards funding their care); andemerge from the Counting the Cost of Care introducing a system of deferred payments, so thatevent organised by the Lancashire LINk in the state takes responsibility for funding care, withpartnership with Help Direct Wyre and Fylde money settled through the individuals estate.and Carers Point! Dilnot also recommends that there would be aCarers recounted their stories of the daily greater role for financial services to play instruggles they face to look after family members providing insurance cover to help people fund thefollowing cuts to services, difficulties in obtaining cost of their care services. However, heequipment and practical support, and general emphasised that every effort would be made tofeelings of powerlessness in the face of ensure the vulnerable were protected.overwhelming bureaucracy. Mr Maynard pointed out that during the lastMore than 60 carers, service users and Spending Review, the Coalition Government hadprofessionals attended the event on Carers allocated 2 billion of non ring-fenced cash to localRights Day - at Thornton Little Theatre, Thornton authorities to spend on developing care servicesCleveleys, to hear Blackpool North and Cleveleys that were locally accountable and responsive toMP, Paul Maynard, and Lancashire County local needs, in line with the new localism agenda.Councils Director of Commissioning, Steve Gross,outline national and local changes to social care. He highlighted the challenges posed by the current care debate, including developing a service that isDiscussing national policy, Paul Maynard admitted localised, yet at the same time meets nationalthat funding care services presented a massive benchmarks; offering personalised care packageschallenge in the light of a growing ageing to meet individual needs, yet recognising that notpopulation, economic issues and the sheer everyone wants choice or is able to exercisecomplexities involving in delivering a coherent care choice without support; and joined up health andservice. He said he had been involved in the same care organisations working together to deliver aon-going debate about care services for the last 10 seamless service.years but now it was time for this issue to betackled head on. He said the current climate meant that it was even more important for statutory and voluntary sectorHe outlined the proposals for the Government organisations to work together to provide efficientWhite Paper on Social Care, due in Spring 2012. care and support services, and emphasised thePart of this will focus on the recommendations need for early intervention, including fallsmade in the Dilnot Review, set up by economist prevention services to prevent costly hospitalAndrew Dilnot to investigate the future funding of stays.care services (for a specialist report on the DilnotReview, see Health and Social Care Update Emphasising that dignity should be at the heart ofNumber Four on page 13). care delivery, Mr Maynard said the role of the CareThe review makes a number of recommendations, Quality Commission (CQC) would be strengthened, with more unannounced inspections

15. Editorial LINk News Out-and- Features News 4 5 about 10 18 21 LINk News 15of care services. He also pointed out that the LINk Government targets to offer everyone access toand, from October 2012, Local HealthWatch (the personalised care by 2013. Currently 7000 serviceorganisation that will replace the LINk) would have users have been issued with a personal budgeta vital role in monitoring care services. and 2200 people are using this as a cash payment or to employ their own personal assistants. ThereSteve Gross, Director of Commissioning at are now 2500 people working as personal careLancashire County Council, described the assistants within the county.challenges faced by the council in having to makecuts of 65 million to adult social care services, as However, he said personal budgets were not forpart of 179 million overall funding cuts over three everybody and he outlined the role of the localyears. authority, voluntary sector organisations and family members in providing support and brokerage.Savings had been achieved by changing the FairAccess to Care (FACs) eligibility criteria, One effect of the move towards personalisationincreasing care charges and reducing funding had been a 10% drop in people buying home careavailable to care providers. or day care services. As a result, only those home care services that offered good, person-centredUnder the FACs criteria, those with care needs care services would survive, and this would driveassessed as moderate are no longer eligible for up quality. He described this as a reflection of thecare services. However, Mr Gross said that since role of the service user as a consumer, able tothe changes, two thirds of those whose care had exercise choice in relation to care services.been reviewed had now been re-categorised ashaving substantial or severe care needs and Mr Gross pointed out that Lancashire Countywere now eligible for care services. This left Council was working closely with the NHS toapproximately one third, or 800 people, who were develop falls prevention initiatives and community-no longer seen as eligible for care. based re-ablement services, to prevent hospital admissions and ensure people are supported inHe said that, in relation to the services it provides, their community following discharge from hospital.Lancashire still fared well, in comparison with other This included the provision of community-basedlocal authorities, though he admitted that the 50% support for people with mental health problems,of service users who were funding their own care following the reduction of in-patient services.were faced with having to pay more for theirservices. He said increased care charges had had And he said there was greater emphasis onan impact on uptake of residential and day care working with the voluntary and community sectorservices, with some people withdrawing from care, to commission services, including support foralthough fewer than expected had stopped their carers. Funding for the network of carers forumscare. across Lancashire had been protected and this remained a high priority.Mr Gross stated that a Judicial Review challengingthe councils funding decisions had upheld the Mr Gross admitted that change was complicatedCounty Councils actions, and an appeal had and unsettling but felt it provided a realjudged in favour of the council. The High Court opportunity to join up services, use resourcesruled that LCC had acted fairly, although a further differently, avoid fragmentation and remove theappeal would be heard early next year. need for service users to have to undergo frustrating and time-consuming multipleHe outlined the developments that had taken place assessments of their needs.to create a personalised care service, in line with

16. Editorial LINk News Out-and- Features News 4 5 about 10 18 2116 LINk NewsCounting the Cost of Care Another women said she had looked after herCarers Stories husband, who is severely disabled following a stroke, for 15 years. She described how in June this year her husbands care package wasCarers gave moving and powerful accounts reduced to 22 hours per week, and this hadof their care experiences to a stunned increased pressure on her to the point that sheaudience. felt physically and emotionally overwhelmed.One single mother of an 18-year-old disabled A man who cares for his aunt described theboy described how she had been trying for difficulties in getting through to Lancashirenearly a year to be re-housed because her son County Council for information about careis struggling to get up and down stairs. She had funding. He was fed up of trying to make callsapproached various housing organisations but to and having to be put through to differentno avail. departments and re-tell his story over and over again.In another case, a woman tearfully describedhow, when her severely disabled son was Pamela Hill, from Age Concern Blackpool, feltadmitted to hospital, he was given a bed that that comments from carers indicated there was adidnt have side supports. Fearful for his safety general lack of awareness about the range ofand concerned that his care needs were not support services available. She felt that GPsbeing met, she made a point of staying at the were not doing enough to signpost carers tohospital each day from early morning until relevant services, and that carers assessmentsbedtime, to provide the care he needed, by GPs needed to be mandatory and subject tobecoming stressed and exhausted in the monitoring.process. Paul Maynard and Steve Gross promised toThe woman explained how she had been caring investigate individual cases. Mr Maynardfor her son single-handedly for 20 years since admitted that in 10 years of campaigning forher husband died, with little support from social better support in care services, the Governmentservices. Despite having a carers assessment was still some way from getting things right. Heshe felt little had been done to improve her referred to the excellent support offered bysituation. organisations such as Carers Point!, but said that it was important that people were made aware ofAnother woman, who looks after her son who the service. It was also important that serviceshas severe mental health problems, said that, were commissioned to ensure those with unmetafter listening to the speeches made by Paul needs were supported.Maynard and Steve Gross, she felt they must beliving on a different planet. She felt that what Steve Gross said he was aware that servicesthey said had little bearing on the realities faced were not perfect. However, the reality was thatby carers on a daily basis. Lancashire County Council had to live within its means, and this presented a massive challenge.She pointed out that service users are desperate He warned that, with the Governments proposalsfor services and frontline staff are not paying to extend austerity measures and the challengesenough attention to carers needs, with most faced by growing numbers suffering fromcarers assessments seen as inadequate. She dementia, the pressure to maintain servicesfelt the support offered through carers forums would inevitably become harder over the comingwas not enough. People are often too busy years.caring to attend forums and what they need ismore in the way of practical support and Do you have a story to tell about yourrecognition of their difficulties. experiences as a carer? Contact the Lancashire LINk, on 01772 431195, or e-mail lancashirelink@theBHA.org.uk

17. Editorial LINk News Out-and- Features News 4 5 about 10 18 21 LINk News 17 Cancer patients hit by return to work proposalsThousands of seriously ill Instead, cancer patients on The ESA replaces a range ofcancer patients could be chemotherapy in hospitals will incapacity benefits. All freshforced to take medical tests now have to prove that they are claimants now undergo a workand face "back to work" too sick to work, and take part in capability assessment, and 1.5interviews under new the work capability assessment million existing recipients will beGovernment proposals, to determine whether someone reassessed using the newcharities have warned. is eligible for benefits. If cancer system from this month. The patients are found able to returnA report to ministers by Prof welfare reform bill introduces a to employment they may also beMalcolm Harrington, the one-year time limit on those required to participate in work-government adviser on testing people claiming ESA in the related practice job interviews,welfare recipients, contains "work-related activity group", as a condition of receiving theirproposals to force cancer who are expected to move into benefit.patients who are undergoing work.intravenous chemotherapy to Such assessments have been A DWP spokesman said: Thisprove they are too ill to work. attacked by charities amid must be about an individuals mounting evidence that peopleAt present, patients who are needs. Our proposals would with serious illnesses are beingunable to work because of ensure a person would only be judged fit for work when they arecancer and the side-effects of asked to attend a face-to-face not.treatments are allowed to claim assessment where absolutely Cancer experts and 30 cancerthe highest rate of employment necessary. charities argue that patientssupport allowance (ESA), worth undergoing "stressful" cancer Are you or a member of yourup to 100 a week. More than treatment and who have to family currently receiving9,000 cancer patients were leave work should be treatment for cancer? What doplaced automatically on the automatically eligible for ESA. you feel about the proposals?welfare payment from October Ciarn Devane, chief executive Contact Lancashire LINk at2008 to June 2010. of Macmillan Cancer Support, lancashirelink@theBHA.org.ukHowever, the expert report says said: Cancer patients in the middle of treatment are, in many *Article taken from Guardianthis "automatic entitlement" has cases, fighting for their lives. website: http://encouraged dependency on www.guardian.co.uk/benefits, "encouraging wrong Yet the government is society/2011/dec/06/cancer-behaviours from employers and proposing to change the rules patients-welfare-work-testsstigmatising cancer as so all cancer patients will havesomething that can lead to to undergo a stressfulunemployment or assessment to prove they areworklessness". unable to work.

18. Editorial LINk News Out-and- Features News 4 5 about 10 18 2118 FeatureLancashire Hospital trusts of measures, including how patients are diagnosed and treated over the weekend; how quicklyfeature in highest death rates hospitals deal with hip fractures; and how hospitals perform in procedures that are not carried out routinely.Two hospital trusts that serve Lancashire patients Blackpool Teaching Hospitals NHS Foundationhave featured in a league table of hospital trusts Trust showed above expected waiting times forwith the highest death rates. surgery following a hip fracture.Research from Dr Foster showed that BlackpoolTeaching NHS Foundation Trust and University The report points out that patients are more likely to die if they are admitted to hospital over theHospitals of Morecambe Bay NHS Foundation weekend because they are less likely to receiveTrust were among the 19 hospital trusts in the prompt diagnosis or treatment.country with the higher than average mortality(death) rates. In the case of hip fracture, the odds of survival forThe researchers used two measures the vulnerable older adults are much higher if they are treated quickly, ideally within two days. If they areHospital Standardised Mortality Ratio (HSMR), a admitted on a Friday or Saturday, the chances ofmeasure of deaths while in hospital, based on prompt treatment are lower.common conditions that can lead to death, and theSummary Hospital Level Mortality Indicator However, Lancashire Teaching Hospitals NHS(SHMI), based all deaths that take place in or out Foundation Trust was identified as one of theof hospital up to 30 days following discharge. hospital trusts that follow all sections of the rapid recovery pathway when treating patients with hipUsing a score of 100 as an average, Blackpool and knee replacements.scored as 117 on the SHMI and 112 on the HSMR,and University Hospitals of Morecambe Bay The researchers also examined hospital trustsscored 114 on the SHMI and 124 on the HSMR. performance on non-routine, specialisedDr Foster researchers also examined hospital procedures. They looked at abdominal aortic aneurysm surgery, as an example, and found thatrecords to look at performance against a number hospital trusts that performed fewer operations for this condition had higher death rates. Blackpool NHS Teaching Hospitals Trust was among the trusts that performed fewer than 35 of these operations in 2010-11. The authors commented that hospital trusts that do not carry out this operation regularly should look at sourcing this work to other trusts that offer this expertise. *In Lancashire this is being addressed through proposals to set up specialist vascular centres (see LINk November newsletter). Elsewhere the report stated that: Private hospitals that provide services to NHS patients have good outcomes and positive patient ratings Staff behaviour is crucial to patient experience. Disrespect and not being kept informed were cited as two reasons why patients would not recommend a hospital. Responding to the mortality findings, Tony Halsall, Chief Executive Of University Hospitals of

19. Editorial LINk News Out-and- Features News 4 5 about 10 18 21 Feature 19Morecambe Bay NHS Foundation Trust, said Wehave been looking very carefully at the detailedinformation and we have asked our doctors tocontinually review all deaths within the hospitals toensure appropriate care was given in each case.We also undertake clinical audits to identifyimprovements in clinical care and provide staff withprotected time for this. Is your care up to standard?There have been problems in the way someinformation has been recorded and this has We need your help to build a picture of whatresulted in a significant increase in the Dr Foster quality care looks like for men with prostatefigure. This has been put right and we expect to cancer.see this reflected in improved figures next year. We know that men face a postcode lottery whenOver the last five years we have seen a decrease accessing prostate cancer services across thein deaths at our hospitals, and we believe that the country. This is not acceptable.main reason for any increase in our Dr FosterHSMR figure is to do with coding and the recording We would like to work with you to makeof mortality data. improvements where they are needed most. To do this, we are identifying standards of quality careDr Paul Kelsey, Medical Director for Blackpool that all men with prostate cancer deserve - atTeaching Hospitals NHS Foundation Trust, said every stage of their journey.the data should be treated with caution as it doesnot give a true reflection of the quality of care You can help by telling us what quality prostatepatients can expect. cancer care means to you by taking part in our survey. Anyone with experience of prostate cancerHe said: One of our concerns is that the new is welcome to take part, whether you have beenmortality indicator does not take into account diagnosed with the disease or are a friend orissues such as deprivation and public health family member of someone who has.issues. Blackpool has amongst the highest levelsof deprivation in the country with lower than To take part in the survey and read more about ouraverage life expectancy. The town also has higher quality care project, please visit:than average deaths related to alcohol, smoking, www.prostate-cancer.org.uk/qualitycare.IV drug use and heart disease and as the SHMI If you would like a paper copy of the survey pleasedata is not adjusted to reflect this our figures will ring 0208 222 7182.be higher.Improving quality of care and enhancing patientsafety are our key priorities and our aim is to haveno avoidable deaths and no avoidable harm. Wehave robust systems in place to monitor mortalityand quality of care and our mortality rates havesteadily reduced over the past few years.We were also recently one of 10 Trusts to takepart in a national study which looked at the casenotes of 100 deceased patients to see whethertheir deaths could potentially have been avoidableand our Trust had the second lowest number ofavoidable deaths.The Dr Foster Hospital Guide can be found on:http://drfosterintelligence.co.uk/wp-content/uploads/2011/11/Hospital_Guide_2011.pdf

20. Editorial LINk News Out-and- Features News 4 5 about 10 18 2120 Feature 999 Call CategorisationThe North West Ambulance Service NHS these calls should receive a response withinTrust has issued important information eight minutes or less. This is a nationalabout how 999 calls are categorised. standard.When a 999 call is received, it is categorised by Green 1 and 2: These are calls that arethe Trusts Advanced Medical Priority Dispatch prioritised as serious but not immediately lifeSystem (AMPDS) to determine the response threatening. As such the Trust aims to reachrequired. Determination of the response required these patients as quickly as practicable. There isis dependent upon the severity of the patients no national time standard set for this category.symptoms at that time, based upon the answers Green 3 and 4: These are calls that are neitherprovided to a series of specific questions. This serious or life threatening. The Trust willsystem works to ensure that the most serious, undertake further telephone triage bylife threatening cases are prioritised and it also paramedics in the control centre to assess theassists in the identification of any suitable patients needs and refer on to more appropriatealternative courses of action. services, or the Trust may pass callers to NHSFrom the 1st April 2011 changes were made to Direct for further assessment. However, therethe way ambulance services are measured. The will still be instances when an ambulance will beprevious three main categorisations (known as dispatched.Category A, B and C calls) were redefined as The new set of clinical indicators introduced fromReds (level 1 and 2) and Greens (level 1,2, 3 1st April 2011 measures performance againstand 4). Importantly, a new set of quality outcome for stroke, cardiac arrest and otherindicators to measure patient outcomes was types of intervention after other forms of heartintroduced. attack. A Trust spokesperson said this type ofCall Descriptions: measurement ensures a focus on quality of outcome as well as response time.Red 1 and 2: These are calls that are prioritisedas immediately life threatening such as cardiacarrests, serious bleeding, severe breathingdifficulties and choking. Seventy five per cent of www.nwas.nhs.uk

21. Editorial LINk News Out-and- Features News 4 5 about 10 18 21 News 21Are you Age 50 or over and The Government contract, from identification)living or working in the Department for Work andRossendale? For more information or to make Pensions (DWP), is estimated at a referral please contact:Do you:- 4.8 million and Remploy has Pamela Beswick, Chief Care about issues and been appointed to deliver all of Executive, on 07825207021, or services in Rossendale the seven available contracts to Sharon Calverley and beyond and how deliver Access to Works mental Project Director, on they affect our health provision, spanning 07825207023 experiences and quality England, Wales and Scotland. Or visit the Website for the of life? This new service aims to assist Referral Procedure: Enjoy meeting like minded more than 1,600 people with www.signposts.org.uk - Refer topeople and new friends? mental health conditions to stay Us. Have skills and views to in employment.share, and are perhaps Fleetwood Family Carer Visit the website for moreinterested in developing new Group information.ones? Come along to our informal getValue your right to have a voice Targeted Youth Support together, meet other carers,and influence the area you live in ,and the services delivered there? Lancaster