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Best Practice, Better Practices –A New Deal for Carers in Primary Care

By Malcolm Clarke and Stuart Riley

With assistance from colleagues at The Princess Royal Trust for Carers' Network of Carers’ Centres

Supported by

Together we care

AcknowledgementsThis report builds on and up-dates the research and evaluation of primary careinitiatives carried out in 2003 for the publication Primary Carers – identifying andproviding support to carers in primary care and presents the findings from threedemonstration projects across England. The work forms part of a Primary Care Projectfunded by GlaxoSmithKline and managed by The Princess Royal Trust for Carers.

The report and evaluation was carried out by Malcolm Clarke, independentconsultant. The questionnaire survey was designed and analysed by Stuart Riley.Thanks also to Barbara Keeley who was the co-writer of Primary Carers, some of whosework is built upon here.

The Princess Royal Trust for Carers would like to thank the project leaders of thedemonstration projects; Helen Mathias – Bristol and South Gloucestershire, CathyCollymore – Lewisham, and Suzanne Carr and Liz Brown - Scarborough and Ryedale.Thanks are also due to Gerry Mahaffey who manages the project, Nicola Skingle theOperations Co-ordinator for the Primary Care Project, Joycelyn Bruce who worked onthe presentation of the report and Erin McMullan who worked on the project’sadministration.

Thanks also to all those staff at the 51 Princess Royal Trust Carers’ Centres withprimary care initiatives who answered questions and sent information and examples toinform the research for the report.

The Princess Royal Trust for Carers is grateful to GlaxoSmithKline for supporting theentire Primary Care Project, including this report and the development of newdemonstration projects in primary care.

About the authors

Dr. Malcolm Clarke is an independent management and quality consultant who hasbeen working with organisations in the public and voluntary sectors since 1996. Priorto this he followed a career up to Deputy Chief Officer and Chief Executive level inlocal government and the NHS in the North West. He is a lay member of the GeneralSocial Care Council. Malcolm’s consultancy work has included a national consultationproject with carers and research into good practice on consultation for The PrincessRoyal Trust for Carers

Stuart Riley spent the greater part of his working life teaching market and socialresearch in The Management School at Lancaster University. Now an independentconsultant and lecturer he additionally works with small and medium size enterpriseson marketing and general business problems.

© The Princess Royal Trust for Carers 2006All rights reservedISBN 1900024074

Best Practice, Better Practices 1

Foreword

Three years have passed since The Princess Royal Trust for Carers publication Primary Carers – identifyingand providing support to carers in primary care explored the substantial learning from its Network of Carers’Centres working within primary care settings in identifying and supporting carers. Its conclusion high-lighted the importance of embedding this work at practice level by encouragement and support fromlocal Primary Care Trusts, Strategic Health Authorities and the Government. Changes of policy andpractice are required at all levels. Since that time the NHS is being restructured and the White Paper, Ourhealth, our care, our say speaks of a ‘New Deal’ for carers. Family carers have an even greater role to play inthe new Health and Social Care agenda.

One in ten of the UK population are unpaid carers. Over a million of those carers care for more than50 hours a week – a number approaching in scale the number of staff employed by the NHS. The NHSbenefits greatly from the contribution made by those unpaid carers, as carers help the NHS understandthe needs of the person they care for as well as providing the vital care that many patients rely on.

As outlined in this report and as the ever increasing body of evidence shows, being a carerfrequently has an impact on the carer’s own health. Carers can suffer from stress and depression dueto the demands of their caring role. They can also suffer physical strain due to lifting or moving theperson they care for. It is clearly vital that carers are given information and support, to protect theirown health and to help them continue caring. As carers have much contact with primary care, GPs andprimary care professionals can play a key role in identifying carers and referring them to sources ofadvice and help.

The Princess Royal Trust for Carers Network of Carers’ Centres has developed considerableexpertise in working within primary care to identify and support carers. Projects began over 13 yearsago and there are now more than 51 initiatives within primary care, an increase of 44% within the lastthree years. These initiatives work with primary care across counties, cities and boroughs and in ruralareas.

The work of these primary care projects has brought benefits to many thousands of carers byconnecting them to sources of support and information, often at the time they most need that help.The work also helps to raise awareness of carers among GPs and primary care professionals. Trainingand awareness sessions have been run for many hundreds of staff from primary care. Expanding on thework outlined in Primary Carers, this report contains a review of good practice, and findings from adetailed analysis of three demonstration projects across England that will be useful for all thoseworking in primary care to support carers.

This report concludes with important recommendations about extending this work much morewidely within primary care. The recommendations show how Primary Care Trusts can lead this agenda.They can use local protocols and local contract negotiations to encourage and support the work toidentify carers, refer them to sources of support and establish clear systems of evaluation. The reportalso offers a list of suggested action for Government, the Department of Health and Strategic HealthAuthorities to support the work at commissioning, auditing and operational levels.

Carers are key partners in the provision of care by the NHS. Identifying carers and finding ways ofsupporting and working with them is not optional but essential for primary care. I commend this reportto NHS colleagues.

Elisabeth BugginsChair, West Midlands Strategic Health AuthorityTrustee, The Princess Royal Trust for Carers

2 Best Practice, Better Practices

Contents

1 Foreword

2 Acknowledgements

3 Section One: Introduction

4 Section Two: Background to carers support and primary careCarers and CaringValue of recognising carersCarers and Health – policy backgroundRecent research by The Princess Royal Trust for CarersWhy should health services identify and support carers?Recent NHS changes and their implications for carersPartnering a New Deal – the way forward

8 Section Three: Primary care work across The Princess Royal Trust for Carers NetworkBackground – The Princess Royal Trust for Carers Primary Care ProjectA three Part ModelProjects in 2006 Results of mapping

12 Section Four: The Demonstration ProjectsIntroduction and methodologyThe practice staff attitude surveyThe practice managers surveyThe carers surveyThe qualitative workThe views of the project managersConclusion

24 Section Five: Good practiceIdentification workReferralChanges within the practiceChanges to routine servicesStrategic work

33 Section Six: Conclusions and RecommendationsA new checklist for GPs and Primary Health Care TeamsA Checklist for Primary Care Trusts and Strategic Health AuthoritiesA checklist for the Government


IntroductionSection One:

The foundation for this report is a three year Primary CareProject conducted by The Princess Royal Trust for Carers andits network of Carers’ Centres across England.

The report proposes a series ofrecommendations for the Government, thenew Strategic Health Authorities andPrimary Care Trusts, and GPs and PrimaryHealth Care Teams, with the aim ofimproving the way primary care servicesidentify and support carers.

The project was divided into twostages. The first stage aimed to find themost effective ways within primary care toidentify carers and encourage them to usethe services available. This culminated inthe publication in 2003 of Primary Carers –identifying and providing support to carers inprimary care which presented checklistsfor those involved at different levels in theNHS. The recommendations were basedon conclusions from a mapping exercise ofthe 36 primary care carer supportinitiatives across The Princess Royal TrustCarers Centre Network in England andNorthern Ireland, a postal survey of carers,as well as four focus group discussionswith carers. The second stage, upon whichthis report is based, updates the mapping

exercise, reviews best practice inidentifying and supporting carers inprimary care, and presents the detailedfindings from three demonstrationprojects.

Subsequent to, and directly emanatingfrom the project, a good practice guidehas been produced to act as a toolkit forprimary care work by Carers’ Centreswithin The Trust’s network. A learningmodule on carers and primary care wasalso produced for the website of theBritish Medical Journal. In addition, TheTrust has developed a website for anyoneworking professionally with carers,focusing initially on health professionals.There are also regular Caring Awards(supported by simplyhealth) for bestpractice carer support within primary careand a separate carers GP Award. The Trustis now commencing a two yearpartnership with The Royal College ofGeneral Practitioners to improve theservices to carers within primary care.

This report covers the following:

• The back-ground to the project and therapidly changing context: carers andcaring, carers’ rights and policyguidance to support carers, and the roleof primary care as gatekeeper.

• An update of the mapping of primarycare projects in The Princess Royal Trustfor Carers’ Centre Network in England.

• A review of good practice in identifyingand supporting carers.

• A summary of the results from thedemonstration projects.

• Recommendations in the form ofchecklists for GPs and Primary HealthCare Teams, for Primary Care Trusts andfor the Government and StrategicHealth Authorities.

1 Keeley and Clarke, Primary Carers – identifying and providing

support to carers in primary care, The Princess Royal Trust for

Carers, 2003

Background to carerssupport and primary care

Section Two:


A carer is someone who, without payment, looks after orprovides help and support to a partner, child, relative, friendor neighbour who could not manage without help due to age,physical or mental illness, addiction or disability.

Anyone can be a carer. A carer can be aman or a woman (42% of carers are men).Carers can be from any ethnic, social orreligious background, and of any agegroup (there are an estimated 175,000carers under the age of 18 in the UK).

Carers are all individuals and come fromdiverse groups facing a range of caringsituations. Some of these develop slowly,for example as parents become graduallymore dependent in old age. Others arisesuddenly and unexpectedly, for instance asthe result of an accident. Some caring roleslast for only a few weeks or months.Others last for years, for example parentsof children with a disability often care fromthe birth of the child until their own death.

The census tells us that there are 5.2million carers in England and Wales, andthe contribution they make cannot be over-estimated. 1.2 million of those carers care

for more than 50 hours a week – morethan a full-time job. By comparison,although the NHS is the largestorganisation of its kind in the world, itactually employs less people than thenumber of carers in the UK.

The nature of the care provided alsovaries widely. Some caring situationsinvolve continuous and intimate personalcare throughout the day and oftenthroughout the night as well. Othersinvolve less intensive care but whichneeds to be carried out regularly, forexample, visiting to make sure the caredfor person is all right and assisting themwith domestic tasks. In other situations theintensity of the caring role can vary greatlyand suddenly, for example where theperson cared for has acute episodes of anillness such as schizophrenia.

Many carers do not perceive themselves

as carers, but regard caring as part of theirnormal responsibility to their family orfriends. Although many carers are willingto take on the role, others feel they haveno choice. Many carers have healthproblems of their own which they mayneglect. These health problems are oftencaused or exacerbated by the physical andemotional demands of their caring role.

The value of recognisingcarersCalculations of the value of carer supportestimate it at around the same as the totalof UK spending on health – around £57billion in 2001–02i. Three quarters ofcarers are worse off financially because oftheir caring role and carers who providehigh levels of care are more than twice aslikely to suffer from poor health comparedto people without caring responsibilitiesii.

However, for many years the role ofcarers in our society, including theircontribution to the work of the NHS, hasgenerally been under-recognised andunder-valued. Melanie Henwood summedthis up in 1998 by her choice of the titleIgnored and Invisibleiii for her research oncarers’ experience of the NHS.

Carers and caring;Who are carers?


Carers and Health –policy background:

Carers’ AssessmentsCarers have a right to an assessment oftheir needs – and this right has beenextended by successive pieces oflegislation. This assessment is undertakenby the Local Authority, and is the passportto a number of support services for carers(e.g. breaks from caring). (Carers(Recognition and Services) Act 1995, Carersand Disabled Children’s’ Act 2000, Carers(Equal Opportunities) Act 2004). Healthservices have a key role in ensuring carerscan access these rights and services. The2004 Act places a duty on primary care togive ‘due consideration’ to a request fromLocal Authorities for the planning orprovision of services to carers.iv

Carers’ Strategy• The 1999 National Carers’ Strategyv

identified the NHS as being the singlemost important point of contact formany carers. It further identified somekey roles for primary care staff, statingthat they should:

• Identify patients who are carers and patients who have a carer;

• Check carers’ physical and emotional health wherever a suitableopportunity arises, and at least once a year;

• Inform carers routinely that they canask Social Services for an assessment of their own need;

• Ask patients who have carers whether they are happy for health information about them to be told to their carer; and

• Signpost carers to other sources of support such as support groups and the local Carers’ Centre.

National Service FrameworkCarers of people with mental-ill health haverights under the National ServiceFrameworkvi - “all individuals who provideregular and substantive care for a person onthe Care Programme Approach should havean assessment of their caring, physical andmental health needs repeated on at least anannual basis, and have their own writtencare plan which is given to them andimplemented in discussion with them”. Inestablishing this standard on carers in theNSF for Mental Health, the Department ofHealth acknowledged that theimplementation of the carers’ right to anassessment was “...patchy. Assessments arenot always carried out. Some carers areoffered very sensitive practical andemotional support. But others receive verylittle, or no help”.

Carers of people with long term conditionsshould have access to appropriate supportand services that recognise their needs bothin their role as a carer and in their own right.They are to be supported by health services,involved in the planning of care, treated aspartners and receive a range of services.Staff working with carers are to receive carerawareness training.vii

Carers’ Equal OpportunitiesPolicy guidance for the 2004 Actviii advises thatthe NHS and Local Authorities develop amulti-agency strategy and ensure that agreedprotocols are in place from partnerorganisations in providing support to carers.

GP ContractsThe new GMS contract for GPs offers 3points if ‘the practice has a protocol for theidentification of carers and a mechanism forreferral of carers for Social ServicesAssessment’.ix The new PMS contract offersa mechanism for inclusion of carers incontractual requirements.

NHS Performance FrameworkTwo core standards from the newperformance framework for the NHS inplace from April 2005 relate to carersx:C14 relates to systems to ensure thatpatients, relatives and carers have suitableand accessible information about servicesand complaints; and C17 requiresorganisations to take account of the viewsof patients and carers in planning anddelivering services.

Recent Research by ThePrincess Royal Trust forCarersOver the past few years, The Princess RoyalTrust for Carers has been involved inseveral initiatives which focus on healthand primary care. Two reports were ofparticular importance. The first was entitledFocus on Carers and the NHS – identifyingand supporting hidden carers Good PracticeGuidexi. The second, called Carers SpeakOutxii, looked at the needs of carers asidentified by carers themselves. It wasbased on the largest survey of the views ofcarers ever conducted in the UK,undertaken through both questionnairesand local focus groups. The report PrimaryCarersxiii was undertaken partly as aresponse to these surveys. Since then, in2004 The Trust has produced a report onthe impact of caring on carers’ health whichconsisted of a comprehensive surveyconducted throughout the UKxiv. It foundthat of 70% of carers who cared for morethan 50 hours per week, almost half thecarers were suffering ill-health as a result oftheir caring role including back injury, highblood pressure, depression, stress ornervous tension, headaches and panicattacks. The minimum help required toimprove carers’ own health was on averagea not unreasonable seven hours extrasupport per week.


Background to carers support and primary care

Why should healthservices identify andsupport carers?

Carers are partners:Carers are partners in the provision ofhealth care to those they care for.Supporting them is a sound investment incontinuity of care.

Carers are patients too:Research has shown clear detriments to thehealth of those who take on a caring role –particularly where the caring role issubstantial. Identifying carers opens up theopportunity of addressing these issues in apractical way with individual carers andthereby improving the health and wellbeingof carer patients.

There are other resources out there:Carers referred to voluntary organisationscan receive a range of support serviceswhich may have a considerable impact ontheir lives and ability to continue to care.

Carers referred to the Local Authorityfor an assessment can gain access toadditional support in their caring rolereducing the extent to which they mayneed to rely on health resources.

In order to implement these principles inthe context of primary care, the reportPrimary Carersxiii made a number ofrecommendations directly for primary careto take up at a practice level and to PrimaryCare Trusts, Strategic Health Authoritiesand the Department of Health at a strategiclevel. Some of these recommendations hadalready been highlighted in an extensivesurvey of carers in The Trust’s CarersSpeak Outxi report in 2002. These included:

• Establishing clear systems in primary carefor identifying carers by all practice staff;

• Telling carers routinely that they canask Social Services for an assessmentof their needs;

• Creating systems to check andimprove the health of carers;

• Providing information to carers(subject to consent) about diagnosis,treatment and prognosis for theperson they care for and medicationsand their side effects; and

• Establishing methods for staff inpractices to refer carers to localsources of advocacy and supportincluding their local Princess RoyalTrust Carers’ Centres or local carers’support organisation.

Recent NHS changesand their implicationsfor carers

RestructuringSince Primary Carersxiii there has beensome progress at national, regional andlocal levels as outlined in the updates inthis report. However, latterly 2005/6 hasbeen a time of major re-structuringwithin health with a reduction in thenumber of Strategic Health Authorities tonine and of Primary Care Trusts to 152across the country. There have beenmajor changes in personnel, roles andstructures. Some NHS bodies haveexperienced significant financialpressures. Carers’ Centres have reportedmuch greater difficulties in engaging atall levels related to primary care oncarers’ issues .There is a perceiveddanger of the progress made for carersin primary care and health in generalbeing lost with all the changes.

The New White PaperThis transition in Health comes at a timewhen the new White Paper on Health andSocial Care: Our health, our care, our sayxv

(with emphasis on our) is promoting a ‘NewDeal for Carers’, comprising:

• An update and extension to the 1999Strategy for Carers;

• Encouragement to Councils and PCTs tonominate leads for carers services;

• A helpline for carers;

• The provision of local, short-term, home-based respite support for carers; and

• The establishment of an Expert CarersProgramme.

Partnering a New Deal –The Way ForwardThe work of the projects outlined in thisreport point the way forward for theimplementation of the White Paper andother statutory developments. They provideprimary care with experience and expertise,and offer examples of good practice aimedat supporting carers and protecting theirhealth. However, good practice withinprimary care is not happening systematicallyacross the country. The picture is verypatchy. Good and innovative practice mayonly occur because an individual working ina primary care setting has developed anawareness of carers’ issues (perhaps as aresult of personal experience or thepromotional activities of the local Carers’Centre) and wishes to improve the serviceoffered to carers.

Roughly two million people becomecarers each year and carers’ health issuescaused by physical and mental ill-health,lack of support, isolation and financial


stress, and lack of information will placecost on the NHS.

Support for carers is likely to be a cost-effective use of resources, and it is correctin principle. Carers are a particular groupwhose special needs have largely goneunrecognised. As a carer in Lewisham putit in one of our focus groups:

“I am a carer and it really does need tobe dealt with a little differently becauseyou are up against so many barriers.”

There is an equity issue here. It isinequitable that there should be widevariations in the recognition of carers’needs and the support given to them indifferent areas of the UK. It is anotherexample of the ‘postcode lottery’.

With the increasing evidence of thecost incurred by the lack of interventionfor carers, and with the emergingrequirements in legislation and thenational standards, it is vital to improvethe range and quality of servicescommissioned in primary care for carers.The primary care projects within ThePrincess Royal Trust Network of Carers’Centres have built up an effective body ofknowledge, experience and mostimportantly answers to theserequirements. The purpose of this reporttherefore is to examine best practice ofcarers’ support within primary care andoffer pointers and solutions for the wayforward.

i Without Us…? Calculating the Value of Carers’ Support, Carers

UK, 2001

ii In Poor Health – the impact of caring on health, Carers UK,

2004

iii Melanie Henwood, Ignored and Invisible? Carers’ experience of

the NHS, Carers National Association, 1998

iv Department of Health, Carers (Equal Opportunities) Act, HMSO

London, 2004

v Caring About Carers: A National Strategy for Carers, HM

Government, 1999

vi Department of Health, National Service Framework for Mental

Health, 1999

vii Department of Health, The National Service Framework for

Long Term Conditions, 2005

viii Elaine Cass, Practice Guide 5 implementing the Carers (Equal

Opportunities) Act 2004, SCIE, 2005

ix Department of Health, Quality and Outcomes Framework

Guidance, 2004

x Department of Health, Standards for Better Health, 2005

xi Focus on Carers and the NHS – identifying and supporting

hidden carers. Good Practice Guide, The Princess Royal Trust

for Carers, 2003

xii Keeley and Clarke, Carers Speak Out – report on findings and

recommendations, The Princess Royal Trust for Carers, 2002

xiii Keeley and Clarke, Primary Carers – identifying and providing


Carers, 2003

xiv Jane Cheffings, Carers Health Survey, The Princess Royal Trust

for Carers, 2004

xv Department of Health, Our health, our care, our say: a new

direction for community services, HMSO London, 2006

Primary care work across ThePrincess Royal Trust for CarersNetwork

Section Three:


The Primary Care Project was commissioned by The PrincessRoyal Trust for Carers to evaluate the work of primary careand GP projects across The Trust’s network. In 2003 PrimaryCarersi was the first report to arise out of the project.

Primary Carersi identified 36 projectsworking across the network of Carers’Centres within primary care. They hadbeen working for various lengths of time,with varying sources and levels ofresources.

In terms of the work they were doing,most were working directly with GPsurgeries, concentrating mostly onidentification and referral of carers. Asmall number were also workingstrategically with PCTs locally.

There have also been positivedevelopments with professional bodies.The Trust is currently embarking on apartnership with The Royal College ofGeneral Practitioners, entitled ‘Carers inPractice’, which will focus on identifyingand referring carers through primary care,informing carers on what they can expect

from their Primary Health Care Team, andinforming primary health care teams aboutcarers’ issues.

Following a seminar run by ThePrincess Royal Trust for Carers at the NHSConfederation annual conference in 2005,The Trust was invited to run a ‘Carers’Masterclass’ at the Confederation in 2006,at which this report was launched.

A three part modelPrimary Carersi identified a three partmodel to describe the work ofidentifying and supporting carers withinprimary care:-

1. Identification of carers and referralof them to other agencies for support;2. Practice development work toachieve change in the way the practice

itself delivers its services; and3. Identification and strategic workwith Strategic Health Authorities andPrimary Care Trusts to influence thedevelopment of policy and allocation ofresources.

Dr. Eric Ward, of Townend Surgeries,Settle, Yorks, has summed up therelevance of support to carers in thefollowing terms: “Good support tocarers will no doubt reduce the needfor hospital admission, respite careadmissions etc. In the long term overallcosts to health and social servicesshould be less. This is the long-termapproach, which should be adopted byhealth care planners and financedepartments”

Projects in 2006 There are now over 50 such projects who,between them, have approximately 125years of experience of primary care work.The distribution of work between theelements of the model is shown in Table 1. It will be noted that there has been asignificant increase in all three areas ofwork, with a dramatic increase in strategicwork.

Background The Princess Royal Trust for Carers Primary Care Project


Results of mappingProjects share their learning andexperience with colleagues in ThePrincess Royal Trust for Carers and otherorganisations through seminars andworkshops and the production of a‘toolkit’ for primary care. Wheels need notalways be re-invented!

There are wide variations in theamount of funding for the projects asshown in Table 2.

Table 3 shows the sources of funding.It will be noted that well over half of theprojects receive no funding at all from theNHS, despite the value of this work toNHS objectives.

Tables 4 and 5 summarise the locationsof the projects and the amount of stafftime allocated to primary care work. It willbe readily seen that these projectsrepresent excellent value for money andachieve some remarkable outputs forrelatively little expenditure.

However, there remain many areas ofthe country which do not benefit from aproject this kind and we wouldrecommend that PCTs in those areas giveserious consideration to the establishmentof such projects.

Table1: Scope of primary care work, 2006

Scope of Work

34

51

20

38

5

43

0

10

20

30

40

50

60

2003 2006 2003 2006 2003 2006

Identification andreferral

Practice development Strategic work

Table 2: Amounts of funding for work with primary care, 2006

Funding range for work with Primary Care (per annum) Number of projects/centresUp to £10,000 2£10,000 to £20,000 4£20,000 to £30,000 7£30,000 to £40,000 0£40,000 to £50,000 7£50,000 + 11Mainstream Funding 5Not specified 13

Table 3: Sources of funding for work with primary care, 2006

SSoouurrcceess ooff Funding Number of projects/centresPrimary Care Trust(s) solely 8PCT & Local Authorities 5PCT & Centre Core Funding 6Local Authority ( Incl. neighbourhood renewal 5and the carers grants)Voluntary donations (incl. grants and fundraising) 7Voluntary donations & centre core funding 1Voluntary donations & Local Authority 2From centre’s core funding 8Not specified 6

No.

of c

arer

s

Table 4: Staffing levels of work with Primary Care, 2006

Number of staff working with Carers’ Centre Location primary care (number of hours worked on primary

care work per week)One part-time Barnet (30 hours)

Belfast (25 hours)Carers Link (Hyndburn & Ribble Valley) (21 hours)Islington (4 days per week)Kennet (7 hours)Lewisham (32 hours)North West Oxfordshire (30 hours)Richmond (17.5 hours)Hammersmith & Fulham (17.5 hours)

One part-time & centre staff Cumbria (Eden) (18+ hours)Two part-time Leeds (41 hours)One full-time Camden ( 37.5 hours)

Harrow (not specified)Salford (not specified)Sandwell (37 hours)South Warwickshire (35 hours)Southwark (36 hours)Winchester (10 hours)West Lancashire (2.5 days/week)

One full-time plus one or more part- Brent (56 hours)time workers

West Sussex – Worthing (38 hrs)Hillingdon (8 hours)

Two full-time plus one or more part- Share the Care (Lincoln) (121.5 hours)time workers

Bucks (min 74 hours)Two full-time supported by Carers First (87 hours)department managerOne full-time plus one or more volunteers City & Hackney (35 hours)Two full-time plus one or more volunteers Gloucestershire (not specified)Centre staff Berks –Reading (7 hours)

Greenwich (10.5 hours)Carers Resource (Harrogate & Craven) (85hrs)

Not specified Gateshead Leicestershire (CLASP) St Helens Bucks (Milton Keynes)


Primary Care Work Across The Princess Royal Trust for Carers Network


Table 5: Staffing levels of work with Primary Care

Range of hours worked on Primary Care (per week) Number of projects/centresLess than 10 410-20 520-30 630-40 940-50 150-60 160-70 070 + 5Not Specified / too varied 20

i Keeley and Clarke, Primary Carers – identifying and providing support to carers in primary care, The Princess Royal Trust for Carers, 2003

The DemonstrationProjects

Section Four:


Introduction and methodologyThree demonstration projects were established in differentparts of the country. The objective was to provide the localCarers’ Centre with resources to enable work with a numberof local GP practices aimed at:(a) improving their carer awareness;(b) improving the ‘carer friendliness’ of

their services; and(c) establishing effective systems for carer

identification and referral.

The locations chosen were Scarborough &Ryedale, Bristol & South Gloucestershire,and Lewisham. This gave a gooddemographic and geographic mix.Scarborough & Ryedale worked with twopractices; Bristol & South Gloucestershirewith four; and Lewisham with 17. In twoof the locations, Bristol and Scarborough,some development work had already beenundertaken with some of the practicesalthough not as intensively as thatundertaken during the project.

As part of the work a “before and after”study was incorporated so that it couldexamine the impact of certain aspects ofthe work undertaken by the centres.There were two elements to the study - aquantitative element and a qualitative one.

The quantitative element involved threesurveys – one of carers themselves, one ofpractice staff and one of practicemanagers. Each survey was undertaken atthe beginning of the project and again atthe end to enable us to measure anychange which had taken place.

The response rates were generallygood, ranging in the different locationsand in the different phases of the study upto 37% for carers, 60% for practice staffand 100% for practice managers.

The qualitative work involvedinterviewing carers face to face. This wasdone because it was felt important tosupplement the ‘cold’ data from thesurveys with some personal accounts ofexperiences from the carers themselves.Therefore small focus groups of threecarers were held in each of the locationswhich were repeated at the end of theproject. In addition, each of the membersof those groups had a telephone interviewafter three months.

By definition, the carers contacted inthe project were in contact with theCarers’ Centres and therefore had alreadybeen identified by some process. In thatsense, they are not representative ofcarers generally, and are likely to be moreaware of their role as carers and of theirrights than other carers. However, manyof them were ‘hidden carers’ before theproject started.

The following sections summarise theresults found by the project.

The practice staff attitudesurveyThis survey looked at 20 statements ofstaff attitudes towards the support andservices provided for carers by theirpractice. Staff were asked to give theirresponse on a five-point scale rangingfrom “strongly agree” to “stronglydisagree” which were scored on scale offive (strongly agree) down to one (stronglydisagree), and the mean scores calculated.The overall comparison of the ‘before’ and‘after’ scores is given below, listed in theorder of maximum change. On scales ofthis kind, any change of more than, say,0.25 is generally regarded as representinga significant shift of attitude.


Practice staff attitudes before and after(Diff is the difference between the “before” and “after” measures)

The surgery works, with others, to ensure that carers have the training and guidance to care safelyPractice staff are trained to support carers effectivelyThe practice offers signposting for carers to other sources ofexpert informationStaff are provided with information on local and national developments for carersCarers help to develop, evaluate and update the information the practice providesThose cared for are asked whether information about their health can be discussed with their carerThe practice gives information about a carer's right to an assessmentThe practice gives a wide range of information about relevant local services to carersThe practice supplies information to carers on looking aftertheir healthThere is a carer support group in the areaCarers can view their own recordsDifferent methods of information giving are offered to carers,including face-to-face discussionThe practice has a staff member with specific responsibility for supporting carersThe practice should alter the services it provides, where possible, to meet carers' specific needs.The practice ensures carers are supported following bereavementPrimary care staff help carers with tasks such as catheterisation,giving injections & lifting.The way information is communicated to carers takes into account any disabilities or impairmentsMany patients who are carers have not yet been identified as carers by the practiceMany patients, who care for others, will not see themselves as carersThe practice is proactive in giving information to carers

Average

BeforeAll

3.193.03

3.68

3.18

3.00

3.85

3.48

3.69

3.694.003.65

3.67

3.28

3.45

3.94

3.89

3.76

3.63

4.043.84

3.60

AfterAll

3.713.49

4.03

3.52

3.31

4.16

3.78

3.97

3.954.243.88

3.89

3.45

3.60

4.02

3.94

3.80

3.64

4.053.85

3.82

DiffAll

0.520.46

0.35

0.34

0.31

0.31

0.30

0.28

0.260.240.23

0.22

0.17

0.15

0.08

0.05

0.04

0.01

0.010.01

0.22

DiffLewisham

0.941.40

0.64

1.00

1.01

1.02

1.44

0.97

0.590.400.46

0.62

1.33

0.35

0.56

0.33

0.64

0.21

0.070.32

0.72


The Demonstration Projects

It will be seen that all scores haveincreased, a number quite significantly so,particularly those relating to training andguidance for carers; practice staff trainingon carers’ support; signposting for carersand staff being given information aboutcarers issues. The overall change is from3.60 to 3.82.

The figures do however hide a variedpicture between the three areas. BothBristol & South Gloucestershire (3.63) andScarborough & Ryedale (3.75) had aconsiderably higher overall startingposition than Lewisham (3.22). There wasvirtually no overall change in the formertwo, whereas in Lewisham there was avery large shift up to 3.94 (+ 0.72).

There were also differences betweenBristol and Scarborough. In Bristol therewas relatively little change on most of theindicators, whereas in Scarborough &Ryedale there were some significantmoves in both directions. For example,there were strong increases in theindicators relating to carers’ training andsignposting for carers and increases on allthose relating to the identification andreferral of carers. This was howevercounterbalanced by decreases in theindicator relating to primary care staffhelping with clinical tasks.

The only large decrease in Bristol &South Gloucestershire was a decrease instaff perception that many carers have notyet been identified as such. There wasalso a decrease in Scarborough & Ryedale,but an increase in Lewisham. This isinteresting because in both the formerplaces, as everywhere, there are still verymany hidden carers. It seems that in thoseplaces, staff are more inclined to believethat they have ‘cracked it’ as a result of thework which they have done, whereas inLewisham that work has made staff moreinclined to realise just how big the task is.This is confirmed in Scarborough &

Ryedale, although not in Bristol & SouthGloucestershire by a reduction in thebelief that the practice should alter theservices it provides in order to meetcarers’ needs.

The differences between Bristol &South Gloucestershire and Scarborough& Ryedale, on the one hand, andLewisham on the other, are no doubtpartially explained by the fact that somemore intensive work was alreadyunderway in those two places, which alsoprobably explains why their starting pointwas higher.

It is worth looking specifically at theLewisham figures which represent asignificant shift of attitude among thepractice staff. Every indicator has movedin a positive direction, some dramaticallyso, such as the practice giving informationabout the carer’s right to an assessment,training for practice staff to supportcarers, the practice having a staff memberwith specific responsibility for carers, thepractice giving out information aboutlocal services and training and guidancebeing given to carers.

Changes of this magnitude cannot bedue to chance, and must relate to theactivities undertaken within the practiceduring the period of the project. Itdemonstrates what can be achieved. Thelessons of Lewisham in particular shouldbe applied elsewhere.

The practice managers’survey Six practice managers responded in the‘before’ survey and 14 in the ‘after’survey. There was a particular change inLewisham where there was no responsein the ‘before’ survey but nine in the‘after’ survey. This in itself is significant,since it shows the increased motivation asa result of the work undertaken.

The number of practices saying thatthey have a system for identification ofcarers was four out of six before and 13out of 14 after. It may well be that thenon-responses in the before surveyincluded many more who did not have asystem, which may have been a factor inthe non-response.

The number of practices using themethods used to identify carers areshown overleaf:


AfterIdentifying carers during normal consultations and home visits 13Encouraging self-identification by carers 12Identifying carers routinely at new patient registration 11Identifying carers at ‘flu jab sessions 10Extracting information from practice records and knowledge 7Identifying carers at health checks 7Identifying carers through repeat prescription systems 6Identifying carers at over-75 health checks 4Identifying carers at well-person clinics 3Identifying carers through hospital discharge procedures 1

Total number of respondents 13

The table above shows that a range ofmethods are used. There are two methodswhich seem particularly under-used inrelation to their potential, namely use ofprescription systems and, particularly,identifying carers through hospitaldischarge procedures, which is apparentlyonly used by one practice.

We explored further the 12 methodsencouraging self-identification, shown inthe table below: Again, a range ofmethods are used.

AfterLeaflets in the surgery 8Specific carers notice board 6Notices on general notice board 6Letters to patients 1Questionnaires or forms in the waiting room 1Other 3




When asked how the information is kept upto date, the managers gave varyingresponses with most saying that it is doneon an opportunistic basis when informationis received or when the patient attends thepractice. Half of the practices said that thereis a named person whose job it is to keepthe system up to date.

The Carers’ Centres reported that thepractices had referred the followingnumbers of carers during the project:Scarborough & Ryedale – 63; Bristol &South Gloucestershire – 478; Lewisham –220. This is a total of 761 newly identifiedcarers, the majority of whom would nothave been identified were it not for thework of the projects. This is quite a highlevel of activity, which represents anapproximate rate per 1000 patients of 5 inScarborough & Ryedale, 14 in Bristol &South Gloucestershire and 2.6 in Lewisham.It should be borne in mind that Lewishamwere working with a far greater number ofpractices and population size than the othertwo areas. This compares with an expectedtotal of 100 carers per 1000 patients, ofwhom about 20 will be caring for more than50 hours per week. Some additional carerswill have already been identified before theprojects started. The figures do howeverillustrate just how large is the target numberof carers to be identified.

We also asked the practice managers,through the surveys, how many carers, andhow many patients with carers, wererecorded on the practice systems.

These questions had a high level of non-response, the reasons for which may be amatter of speculation. This meant that it isstatistically unreliable to break this downbetween the three areas. However, from theanswers received, overall in the before studythe managers identified levels of 1.1 patientsper 1000 as having a carer, and 3.7 whowere carers. These rose to 2.4 and 6.3respectively in the after study.

The carers’ surveyIn total just under 300 carers responded tothe surveys. 84% of these were caring forone person; 11% for two people and 5%for three or more.

The analysis of people cared forshowed that approximately half were thespouse or partner, with most of theremainder being split approximatelyequally between parents and children. Theaverage age of the person cared for was60, but this hides ‘peaks’ at the lower andupper ends of the scale, and is only acouple of years older than the average ageof the carers in this study.

69% of the carers in the ‘before’ studywere female, rising to 73% in the ‘after’study, reflecting the national position. Themajority of carers in the survey (80% inthe ‘before’ study and 70% in the ‘after’study) classified themselves as “WhiteBritish” with the second largest categorybeing “Black or Black British” (9% in the‘before’ study rising to 13% in the ‘after’study, which probably reflects a higherreturn from Lewisham in the ‘after’ study).

The nature of the disability or illness ofthe person cared for in the ‘after’ survey isshown below, in percentages ofrespondents mentioning (rebased to 100because it was possible for more than onecategory to be ticked).

It is encouraging that there was anincrease over the course of the projects.However, the apparent discrepancy withthe figures produced by the centressuggests that many carers who are beingidentified and referred by the practicesare not being recorded as such in theirrecord keeping systems. If true, this is amatter of concern because it means thatthe practices cannot use the informationfor other purposes and have no way ofmonitoring their own performance in thisarea.

When asked whether the careridentification scheme had reduced, leftunchanged or increased the workload ofpractice members, the managersidentified a marginal increase for moststaff categories.

The managers did not identify anyincrease in the number of changes madeto practice systems under variousheadings as a result of the systematicidentification of carers. Only six suchchanges were identified at the beginningof the project, with the same number atthe end, despite the fact that there weremore respondents at the end. This isdisappointing because it appears toindicate that the practice managers seethe importance of carer identification interms of referral to other agencies ratherthan changes in the way the practice itselfoperates. There was a not dissimilarpicture regarding new services for carers.Three were identified at the start, and fiveat the end. These included a practice-based carers group and training forcarers.

There was a small increase in theproportion of practices which hadprovided staff training on carers’ issues,but there were still less than half that haddone so. This had been mainly providedto receptionists and practice managers.


% of responsesChronic ill-health - e.g. diabetes, arthritis, MS, ME, heart problems 20Old age or frailty, including Alzheimer’s 15Physical illness and physical disability - e.g. stroke, cerebral palsy 14Learning disability - e.g. Down’s syndrome, autism, Asperger’s syndrome 13Mental illness - e.g. schizophrenia, depression 8Physical illness 7Other serious illness or disease - e.g. cancer, vascular conditions, lung disease 7Physical disability and mental illness 6Other 10

Total number of responses 100

The level of caring commitment andresponsibility is shown by the fact thatalmost two-thirds of the carers spend 50or more hours per week on their caringresponsibilities. The mean length of timeof these caring responsibilities was nearlynine years in the ‘before’ study and 11.5years for the ‘after’ study.

Approximately half of the carersreported that they themselves also have a

disability or long-term illness. Two-thirdsreported that their own health had beenadversely affected as a result of their roleas a carer.

We then asked in what way had theirhealth been affected, the responses towhich in the ‘after’ study (which wassimilar in this case to the ‘before’ study),are reproduced below (respondents couldtick more than one category).

% of responsesYour physical well-being 69Your mental well-being 67No time to look after my own health 61Other 24


This confirms what we already know fromnational research, that caring does haveconsiderable adverse effects on carers’health for a high proportion of carers. Thehealth consequences listed by carersincluded:

• Great tiredness;• Depression and mental health problems;• Stress;• Back problems;• Eating disorders;

• Feelings of guilt;• Inability to recover quickly from routine

ailments;• Heart problems;• High blood pressure;• Irritable bowel syndrome; and• Tinnitus.



In addition, carers identified a range ofother adverse social consequences, suchas inability to get out of the house; lack ofsocial life; and no time for themselves. Inpractice, of course, it is impossible toseparate the so-called social issues fromtheir health consequences. Thus a lack ofopportunity to meet friends might wellhave adverse consequences on the carer’smental health.

Half the carers were retired, with afurther quarter not being in employmenteven though they are below retirementage. Only 18% were in employment, whichwas part-time for more than half of these.Only 28% shared the caringresponsibilities with someone else. 62% ofthese shared it with one other person.27% of these other people in the ‘before’study, falling to 15% in the ‘after’ studyare aged 18 or under. This may indicatethat the number of young carers is evenhigher than usually identified, becausemany of them are not the primary carer.

In the large majority of cases (88%before and 80% after) the carer and thecared for are registered with the samepractice.

The following sections look at the keyissues of the change which occurred overthe course of the project

At the beginning of the project 69 % ofcarers said that the GP and surgery staffknew that they were a carer whereas inthe ‘after’ survey this had risen to 79%. Atthe start only 15% of carers said they hadreceived information about their role as acarer from the practice. This had risen to27% in the ‘after’ survey. The proportionof carers who feel that their situation as acarer is taken into account when they wantto see the GP or nurse about their ownhealth rose from 33% to 44%. When askedon a four-point scale if the GP surgery isaware of their needs and responsibilitiesas a carer, there was an increase in the

mean score from 2.66 to 2.79 i.e. anincrease in practice awareness. All ofthese are welcome and significantfindings.

About a third of carers weresignificantly concerned that others canoverhear their conversation whenspeaking to the reception staff and thisproportion did not alter much over thecourse of the project. The proportion ofcarers who reported experiencingdifficulty for themselves and the cared-forperson when waiting in the waiting areaincreased from 26% to 39%. It is difficult tointerpret this, but it may be due tovariations in the nature of the disability orillness of the person cared for since itseems unlikely to be due to a deteriorationin the situations at the surgeries. This isconsistent with another change, namelythe increase from 28% to 38% in theproportion of carers who said they needsomeone to look after the cared forperson in order for them to be able to visitthe GP surgery.

Carers were asked how easy it is forthem to see the GP about their own healthneeds on a three-point scale. There was aslight movement towards it being moredifficult, which might be due to variationsin the circumstances of the carer, or,perhaps more likely, might be due to otherchanges which are referred to below.

There was effectively no change in thedeclared extent to which carers arediscouraged from visiting the surgerybecause of the expected waiting time; thecarers’ view of whether the servicesprovided for carers at the surgery is verygood; their view of the quality of theinformation about the health needs andtreatment of the cared for person, andwhether there is any extra informationwhich they would like to see.

There was a slight increase, from 24%to 29% in the proportion who said thattheir GP had put them in touch with theCarers’ Centre. When asked if the GPsurgery had ever contacted a range ofother agencies on their behalf, thefollowing results were obtained:-

Before After AllSocial Services 20 31 51Carers' Centre 14 20 34Benefits Agency 14 15 29Housing Department 8 10 18Other non-statutory agency providing carers support services 3 7 10Local Councillor 1 4 5Other 12 15 27

Number of responses 5 64 115


Although all categories increased over thetime of the project, which is welcome, itshould be noted that, considering thatthere were 140 replies ‘before’ and 153‘after’, these numbers are not high. Eventhe score for reference to Social Servicesis only about a sixth of carers ‘before’ anda fifth ‘after’. In this context it should beremembered that the GP contractpayment for establishing a carers registerincludes the requirement that carers arereferred to Social Services.

The proportion of carers who thinkthat the surgery staff would benefit fromtraining about carers remained very high(82 % - 84%). This is not really consistentwith the staff attitude findings onwhether practice staff are trained tosupport carers effectively, which showeda significant increase.

We asked carers to say how importantthey thought a range of services to be. Ineach case the perceived importance wasvery high in both the ‘before’ and ‘after’surveys with a range from 74% to 98%saying it was important.

When we look at the availability ofthese services, in the table below, it isencouraging that all are perceived to haveincreased in availability, many quitesubstantially. The biggest increasereported was the identification of carerson the computer system.

Measure of perceived availability:% of those who answered saying service was available

Before % After %Identification of carers on the computer system 20 44A member of staff who knows about services for carers 29 43Carers being able to order prescriptions by telephone 32 39Sign asking carers to identify themselves 7 32Someone based in the surgery to liaise between the carer and the GP 22 30Appointment times allocated to carers 15 16

The smallest move was in “appointmenttimes allocated to carers” which hasimproved by only 1%. It seems clear thatduring the course of the project, carershave perceived little improvement in theiraccess to appointments. This may well bedue to the changes in appointmentssystems generally, following the ‘advanceaccess’ targets set for GPs, whichcoincided with the period of this study.

The qualitative work

As one would expect, the discussionswith the carers revealed a range ofcircumstances and attitudes on the extentto which GP practices recognise and meetthe needs of carers. The first round ofinterviews revealed a number of problemsbeing experienced by the carers in theirdealings with the GP practices inobtaining the support they need. Carer Sat Scarborough said:

“When I saw the doctor that morningand explained, all he said [was] ‘wecan get hold of somebody if you needhelp’ and that is all the doctors or thestaff at the surgery have said. Theyhave been no help whatsoever. Nophone numbers, no advice. So it wasthe leaflets, well it is a little booklet,which I noticed.”



Although help was being offered in ageneral sense, it was not particularly pro-active and it was the leaflet from theCarers’ Centre which was seen as beingmore useful. The same carer later statedthat no-one at the practice had interestedthemselves in whether she had a problemwith prescriptions. As will be seen below,the same carer had a different perspectivetoward the end of the project.

In Bristol, Carer R, was also put in touchwith support from the Carers’ Centre as aresult of a notice in the surgery:

“One day I thought to myself I justcan’t handle this and I had better goand have a word with the GP, and justhappened to see J’s name on the board,and I thought, well I will try here atleast that will be the start.”

The same carer summarised the GP’sapproach thus:

“No I went on for several years youknow and it was affecting my healthand I can’t remember the GP eversaying you know that you need somehelp domestically or anything like thator I’ll give you the medication orsomething.”

In Lewisham, Carer C who has a son withautism made a similar point:

“Well he certainly didn’t mention it tome. In fact I am still not really fullyaware whether my GP knows that I ama carer, although I did fill in aquestionnaire. Whenever I have triedto get appointments and things it hasnever kind of registered that I might behaving difficulty elsewhere.”

The carers did not generally have anycriticism of the quality of clinical care

more knowledgeable, a little bit moresafe that there is somebody out therethinking about us and trying to help usand inform us why these things arehappening.”

She summed up the general situationthus:

“If we continue having these meetingslike I say at the surgery with this sort ofslow improvement in the GPsrelationship with us as the carers, if thiscontinues to improve at this speed if itcontinues I hope and pray that itcontinues because I feel like there issomebody else there who is helpingus. We are not forgotten aboutbecause everybody, sort of in thevillage sort of, yes you are getting onfine. They just isolate you and theydon’t bother but there is somebodythere advising you and helping you.”

Carer A quoted the doctor’s response tohis situation following a problem whichwas affecting his ability to care:

“Well my surgery I had a particulartime when I had a terrible pain the heelI could hardly walk and I was fallingover…and I went to the doctor and hesaid oh you are a carer we must haveyou right.”

In Lewisham Carer T identified hersupport as being more due to the Carers’Centre than the practice:

“It really was [that] I learnt a lot fromthe workshops that helped me a lotespecially at the beginning when wedidn’t know what to expect withdementia. It really was looking it upon the internet and reading all wecould and information obviously from

provided for them, quite the contrary,and, indeed in many cases did not see itas part of the practice role to providesupport to them as carers.

The second round of interviews didreveal some limited evidence of change.In Scarborough, Carer S described thechanged situation, and the value of both adedicated person looking after carers’interests at the surgery and carers’support meetings at the surgery:

“Things have greatly improved in thelast couple of months. We have got, Isuppose you would call them a liaison,(one of the ladies behind the desk is, itsays on the board, a liaison officer),that if we have any problems and thatinstead of contacting Ryedale Carers, ifit is their closed date (because they arenot open every day of the week), wecan ring this lady at Ayton surgery andtalk about any problem…we have andsort it out.

We have also started to have meetingsat Ayton surgery which was arrangedby the Ryedale Carers and the groupsurgery, and…our first meeting wasbasic first aid. It started off rather likeat school. Very nice room and coffeebar and tables and notepaper andpencils, and it started off very formalabout blood pressure. But then we allpartake of what things werehappening to the people that we carefor, suffering from blood pressure orwhen we moved them fromwheelchairs quickly…and it becamemore of a general chat about things,and you felt more informed aboutthings and it was a really nice meeting.It was just over an hour and you couldrelate to things as a carer, and therewere ten of us…and I felt a little bit


coming to the workshops. So thecarers have done much more for methan the actual GPs. The carers’ groupand what have you I learnt more fromthem than GP.”

Carer C also had problems with herhospital discharge:

“It is just the discharge afterwards andthat. I got the family arranged to lookafter things and they discharged meand that and I was straight back. Assoon as I got home I was straight backinto the caring role, managing withcrutches and bandages and thingswhich I found very hard.”

All the groups emphasised the value of thework done by their Carers’ Centres. AsCarer A in Scarborough put it:

“It is a support network which I findextremely useful and that I really do.Strange people at first that come intotheir home and help you to sort outgreat problems. Little problems thatseem great and you get these sortedout when you can’t even at the localdoctor’s surgery, you just get asentence or you don’t get any helpwhatsoever. Somebody there is what Ifind is good.”

In a memorable phrase, Carer R describedhow being recognised and identified as acarer and referred to the Carers’ Centrehas helped him:

“And then I became an official carerand everything hopefully, touch wood,has worked well since then.”

The views of the projectmanagersThe three project managers havesummarised their views on how theprojects went.

Their collated views on the attitudes ofprimary care staff at start of the projectcan be summarised as follows:-

Before• GPs were often unwilling to refer to the

Carers’ Centre due to several reasons,including uncertainty about whathappens to carers’ support if the fundingends and misconceptions regarding thevoluntary sector e.g. that it is comprisedof volunteers and do gooders who arenot professionals and are not permanent;

• Many primary care staff were unawareof the concept of carers, and tended toonly focus on the cared for needs;

• Practices often tended to be of themedical model & condition focused.Often such referrals as there werefocused on the cared for medicalcondition;

• Practices were doubtful about referringcarers for what they perceive to beintangibles – emotional or preventativesupport;

• Due to issues regarding patientconfidentiality, at the start of the projectsome referrals had nothing on themother than the carers’ name, address,date of birth, telephone number, thatthe carer had given consent to thereferral and the referring GP name.Practices often felt they could notdiscuss or disclose the cared forcondition;

• Primary care staff were oftenpredominately unaware of servicesavailable to support carers includingCarers’ Assessments or where to referthem;

• Some surgeries were not keen on theidea of a carers’ register and were notconvinced about using codes to identifycarers, often because they didn’t seem tobe able to see the purpose of this or tounderstand the long term nature ofcaring;

• Some staff did not understand thedistinction between carers and careworkers or assistants;

• Some staff were not clear as to who couldbe a carer, which was wrongly seen as anolder people’s issue, definitely not youngpersons;

• It was not seen as an issue that wouldaffect practices, or, crucially, one thatcould reduce practice workload in thelong-term. Practices hadn’t thought of thebenefits to the practice of identifying andthen referring or signposting carers; and

• Some practices hadn’t thought of carershealth as an area of particular concern.

Their collated views on the attitudes ofpractice staff at the end of the project canbe summarised as follows:-

After• Practices have increased carer

identification, awareness andunderstanding of carers’ issues and thebenefits of proactive support andprevention of break down of the caringsituation, although practices still tend tosee referring carers to a project as themain method of offering support;



• Carers identified by the project werereferred on to other Carers’ Centreservices, and given intensive supportduring hospital discharge;

• Work which helped avoid hospitaladmissions was highlighted as goodpractice by the Audit Commission intheir report “Supporting the Needs ofCarers of Older People”;

• Identification and support was given toless ‘traditional’ categories of carers whoare very often isolated such as thosecaring for people with drug and alcoholmisuse issues, gay and lesbian carers,and carers of people who are HIVpositive;

• Young carers were identified andreferred to young carers’ projects;

• There was measured impact onavoidance of dual admission to hospitalif the carer’s own health breaks down,by the primary focus on supportservices for the carer;

• Development work assisted the PCTpilot flu vaccination for carers prior tothe inclusion in the at-risk list nationally;

• More referrals were coming from GPsurgeries outside of the project;

• Carers who self refer are increasinglysaying that they saw leaflets or postersat their GP surgery;

• Other surgeries now want to work withthe Carers’ Centres; and

• There is increased contact with primarycare mental health workers.

• GPs were more actively referring carersand asking for advice and support forthemselves and referring their own staff;

• Through education & collaborativeworking, GPs were more flexible on theconfidentiality issue;

• Education to reinforce the safety issuesfor the cared for regarding potentialoverdosing etc helped to encouragepractices to take an inclusive approachwith complex medicine management;

• However there was a constant need tokeep the project at the forefront of theminds of key staff. GPs were mentionedas more difficult to engage and convincethan other practice staff;

• Practice managers and carer linkworkers were more open to the idea ofusing READ codes to set up a carersregister. This may be related to both theinfluence of PCTs, and extensivediscussion as part of the project.Practices better understood the value of‘tagging’ carers’ notes;

• In principle most practice staff think thatsupporting carers is a good idea. Thedifficulties seemed to be in convincingthe rest of the team to see that thesupport and identification of carers ispart of their role, not somebody else’sand to persuade them to use theresources available to do so;

• There was heightened awareness of howCarers’ Centres actually work with andsupport carers, and their level ofprofessionalism which has resulted in anincrease in contact and referrals;

• There was an increase in ‘hidden’ carersidentifying themselves as carers

(including primary care staff themselves);

• Carers’ Centre staff attended practicemeetings, and there was increased useof the primary care toolkit and messageson repeat prescriptions;

• Practices had a better understandingthat anyone can be a carer, at any time,and there was a reduced perception ofstereotypes;

• There was an improved understandingof the effects of caring on the carers’health and well being;

• There was more understanding of therole carers play in society and themoney they save the Government;

• Practices have been requesting regularsupport and awareness training; and

• There was a development ofunderstanding that carers don’t alwaysidentify themselves as carers.

The project managers identified thefollowing other ’spin offs’ from theproject:-

• Partnership working was developedwith other professionals e.g. withConsultant Nurses for older people andvulnerable adults, consulting with carersaround their experiences of the hospitaldischarge process and how they canimprove the ways they work with carers.Other partnership working wasdeveloped with Community Workersand advanced Primary Care Nurses;

• Carers groups were established insurgeries and health centres, often wellattended;


Conclusion

Identification of carers is of keyimportance. If they remain hidden,discussions about how and by whomsupport should be provided remain largelyacademic. Hidden carers, according to theCarers’ Centre projects, were identified bya variety of means such as practice staff,leaflets, notice boards prescriptions butthere is very little evidence of practicerecording carers’ details. Perhaps thesingle most significant finding was thatalthough practice staff and practicemanagers say that carer identification hasincreased, the response by the managerson the number of carers identified fortheir practices shows that it is orders ofmagnitude below the level which we knowit should be. There is much work still to doand carers are missing out on the benefitsthat identification can bring.

Perhaps inevitably, a mixed pictureemerges from this evaluation of the project.The surveys of practice staff and carersreveal clear evidence of positive change inthe attitudes of those staff, on a number ofkey dimensions, and an increasingrecognition of the caring role. However,there is little or no evidence of change onsome other indicators. There was evidenceof a deterioration in the ease of obtainingcarer-friendly appointments, although thisis likely to be due to wider changes inappointments systems to meet nationaltargets. This suggests that strong leversmay be needed to achieve real change.

The qualitative interviews and focusgroups revealed limited evidence ofpositive change over the period of theproject, but there were some examples ofchanged approaches and their benefit. Itseems that the main benefit is not so muchin changes in the way the practicesthemselves provide their services, butmore in an increased awareness of carers’

situations and the support services whichare provided by others, particularly theCarers’ Centres. There was evidence thatthe carers are, by and large, satisfied withthe clinical services of their GP practices,and don’t necessarily expect more supportdirectly from them.

The interviews did however highlight,yet again, both the demanding nature ofthe caring role and the value of thesupport provided by The Princess RoyalTrust Carers’ Centres. It was theidentification and referral – whether self-referral or referral by a GP practice – tothe Carers’ Centre which has made themain difference to the carers.

Those involved with managing theproject believe that it has resulted insignificant positive changes of attitude andbehaviour, which is encouraging. InSection Six: Conclusions andRecommendations, we discuss where wethink this work should now be taken.

Good practiceSection Five:


We hope that this summary of good practice, based on theexperience gained by numerous valuable projects across thecountry, will act as a guide and a resource for those who wishto develop this work. Within the text we have highlightedexamples of good practice using a three-part model, althoughspace does not permit the mention of more than a smallproportion of these.

Identification

There is very limited value in identifyingcarers and keeping a ‘register’ of themunless that information is put to use inimproving services for carers.

‘Register’ means a method of identifyingwithin practice records those patients whoare carers and those who have carers, withthe facility to identify them collectively.This will most often be done by use of theappropriate READ codes within thepractice computer system.

It is important that registers should beassessed not only as processes but also interms of the number of carers identified.As an approximate rule of thumb, 2,000patients on a GP list are likely to includeabout 200 carers. Of these, about 67 are

likely to be caring for more than 20 hoursper week, including about 40 caring formore than 50 hours per week.

Systems should also be put in place tomaintain the accuracy of these records, assituations change, which they frequentlydo. Carers should be asked to keep thepractice notified of any changes in thesituation

If the register is not used to its fullpotential, then carers will not besupported to the extent to which theyshould be. Furthermore, if primary carestaff can clearly identify the benefits totheir patients and themselves, in reducedworkload, they are much more likely to bemotivated to identify carers and to keepthe register up to date.

Primary Carersi identified three different

types of activity for the identification ofcarers namely:

i. Extracting information from practicerecords and knowledge;

ii. Making opportunistic use of practicecontacts with carers; and

iii. Encouraging self-identification bycarers.

To which we may add:

iv. The notification to the practice by thelocal Carers’ Centre.

Greenwich PCT have issued a protocolentitled ‘Supporting Patients who are Carers’in conjunction with the Carers Centre. Thisincorporates many of the ideas which havebeen put forward in Primary Carersi andelsewhere, and gives advice to practices onhow to proceed.

Islington PCT have accredited a writtenprotocol on the identification and referral ofcarers produced by the local Carers’ Centreand Camden PCT have also supported aprotocol developed by the Carers Centre,which included leaflets, a carers informationpack and was supported by visits to practices.Leeds and Worcestershire also have protocols.


A number of projects e.g. Bucks andSwindon have produced guides and toolkits toaid the identification of carers in primary care.

There are various models of joint workingbetween Carers’ Centres and primary care.Many projects use primary care link workerswho work closely with individual practices.By contrast, other centres have worked moreclosely with community nurses rather thandirectly with GPs, and also find this to bevery effective.

Extraction from recordsSimply working through all the individualpatient records of the practice to identifyall those who have a carer is unlikely to bean effective approach. It is very labour-intensive and the information that apatient has a carer may not always berecorded in the notes (indeed, the factthat it often is not recorded, is preciselythe problem).

It is possible to undertake searches ofcomputerised records by relevantcharacteristics, for example, a search ofpatients suffering from Alzheimer’sdisease. A variation on this is to undertakea search by prescribed medicines that aregiven to patients with a particular medicalcondition who are likely to have a carer.These methods could be used to initiatean approach to the patient, either bywriting to them or placing a marker ontheir computer record to enable this to befollowed up when next seeing them.

The Dearden Avenue practice in Salfordcarried out a computerised search of allpatients aged over 70 who were not inresidential homes and wrote to their next ofkin asking them if they were the patient’scarer. In 60% of cases, a carer was identified.This enabled follow-up information to besent telling the carer about support which isavailable, including having an assessment oftheir own needs.

The most cost-effective way of utilisingexisting practice information is poolingthe knowledge of the GPs, nurses,receptionists and other professionals.When teams undertake such an exercise,they are often surprised at how manynames they come up with. One advantageof this method is that those members ofthe team may have some understandingof the intensity of the caring commitment.

Dr. Campling and partners of BroughtonHouse Surgery in Aylesbury asked everymember of staff to identify carers theyknew of, and sent out a leaflet to themasking for their consent to be added to thecarers database.

Making use of normal contacts

The primary care team have manyopportunities to identify carers throughtheir normal contact with patients –either with the person cared for and/orwith the carer.

Normal consultations, including home visits:

The consultation could be with either thecarer or the cared for person, andpresents an obvious opportunity toidentify a caring situation.

Primary Carersi noted that considerationfor carers during home visits can helpprevent carers feeling ignored:

“The district nurses come on visitsabout my mother’s ulcers but I feelinvisible. No one says: ‘How are youcoping?’ If you say: ‘This is getting ontop of me’ then you get a few wordsof sympathy. The doctors also treat melike I am invisible, they come in andsort out mother then they just go.”

However, other carers commented onhow their GPs have been aware of themand their needs

“The doctor used to bring my notes aswell when he made a home visit.”

“I had a phone call out of the blue fromthe GP, to check up if everything wasOK.”

Similarly, consultations with the carer as apatient present an opportunity to identifytheir caring role. It cannot be assumed thatcarers themselves will always make this link,or volunteer information about the demandsthat the caring role makes on them.

Practice nurses from The Limes practice inSalford do home visits for patients whoappear to have a carer and run through aseries of questions with the patient and thecarer about who does certain tasks. They thenfill in a referral card for the Primary HealthCare Team(PHC) so that other professionalsknow about the situation and referrals aremade to sources of advice and support.

The Greenwich protocol states ‘allconsultations provide an opportunity for theGP, Nurse, Physiotherapist etc. to enquire asto whether or not the person they are seeingas the patient is (as well as being unwell)caring for somebody or being cared for bysomebody’.

Carers Leeds provides members of thePHC Team with a three-part yellow card, onepart of which is used to update practicerecords and one part of which can be postedto the Carers’ Centre. York and Selby use areferral form which members of the PrimaryCare Teams are encouraged to fill in whenthey meet a carer, and this is then forwardedto the Carers’ Centre who send out a carerspack to the person identified.


Good practice

New patient registrationsThese should, as a matter of routine,include a question to identify whether thepatient is a carer or has a carer.

Carers Leeds produces a Practice NewPatients’ Questionnaire for use whenregistering new patients which asks if thepatient is a carer. The Stanmore MedicalPractice in Harrow has done the same. TheGreenwich protocol also requires informationabout how the practice supports carers to beincluded in a new patient pack, andseparately identifies young and adult carers.

Use of other health eventsOther health events undertaken at the GPsurgery present opportunities foridentifying a caring role. These mayinclude, for example, ‘flu jabs, over 75shealth checks or well-person clinics. In2005 the eligibility for jabs was extendedto carers. It is important that thisopportunity is used to update practicerecords about the caring role.

The Carers’ Centre Health Project inLeeds has worked throughout the city to trainprimary care staff to identify carers at over 75checks and at flu jabs sessions, or when thecarers have other contacts with practice staff.The project has yellow cards, which are givento carers for them to return to the practice sothat records can be annotated.

Repeat prescriptionsThe ordering or collection of repeatprescriptions can be used to identifycarers, because a high proportion ofpatients who have carers also havemedical conditions which require repeatprescriptions.

The Greenwich protocol requires that‘each practice will ensure that at least once ayear it runs a two-month campaign to identifyboth adult and young carers using a globalmessage on the bottom of its prescriptions’and that it ‘will ensure that at least once a

year for a four-week period it works with itslocal pharmacy to encourage carers toidentify themselves to their GP practice byusing specially printed post-its on all repeatprescriptions’. Each year Lewisham CarersCentre also operates such a post-it scheme.Post-its were chosen for simplicity and toavoid staples.

Hospital discharge Hospital discharge is often the point atwhich a carers role starts, frequentlycompletely unexpectedly. GPs who arenotified of a discharge have a role in thisas well as the hospital itself.

In Durham a questionnaire on this topicwas sent to all hospitals serving the areawhich resulted in a strategy documententitled ‘Hospital discharge planning, arecarers’ truly involved?’ and a seminar forhospital team leaders and PCT staff. Thishas resulted in a leaflet called ‘Is someoneclose to you coming out of hospital?’ whichwas widely-distributed to communityhealth outlets.

Self –identificationNotice boards, posters, fliers and practiceleaflets:

Carers’ notice boards, posters, fliers andregistration cards should be visible insurgery waiting rooms. It is important thatthe language and descriptions used arereadily understood. The materials shouldbe kept up to date and replenishedfrequently.

Carers Leeds provide text for practiceleaflets. The Greenwich protocol specifies thatthere should be two prominent posters – onetargeting adult carers and one targetingyoung carers – and that electronic messaging,where it is exists, should be used for thispurpose. It makes reference to appropriateterminology and also specifies that thereshould be carers registration vouchers in the

waiting or reception areas. Carers Sandwellestablish ‘carers’ corners’ in GP surgeries,with a resource file for each practice.

LettersA letter to patients can be used toencourage self-identification of carers.They can be handed to patients when theyarrive at the reception desk or sent topatients at home, which will reach thoseunlikely or unable to visit the surgery. Thiscould be to all patients or to a selectedsub-set of patients based on diagnosis,medication or other information. ThePrincess Royal Trust for Carers GoodPractice Guide, Focus on Carers and theNHS – identifying and supporting hiddencarersi estimates that a targeted mailing to2000 patients would produce 120 positiveresponses. It should be easy for the carerto reply, perhaps by using a pre-paid tear-off reply slip.

Carers identified by the localCarers’ CentresThere should be a mechanism for theinformation about carers known to thelocal Carers’ Centres to be fed intopractice information systems.

York and Selby Carers’ Centre informspractices who their carers are as part of amailing every 6 months which also includesupdates on the services offered by thecentre. Worcestershire Association of Carershas developed a Carers GP Registration cardfor carers to take to surgeries. The responseto this is monitored by the PCT as part of itscontract monitoring. Carers Resource(Harrogate & Craven) provide detailedinformation to practices about which carersthe practices are supporting and which theyare not.


Recording the informationwithin the practiceThe information that someone is a carer,or has a carer, should be readilyaccessible to any health professional whois using the record.

It is appropriate to obtain the carer’sconsent to be registered with the practiceas a carer. It is also very important to obtainthe consent of the cared for person that thecarer can have access to clinical informationabout them, and for their records to becross-referenced with those of the carer (ifthey both use the same GP practice).

The method of recording involves usingREAD codes 918A for the carer, and 918Ffor a patient with a carer.

Referral

General pointsIt is important to ask the carer what kindsof support they need. They should begiven information about types of supportwhich they may not have previouslyconsidered.

The Harewood practice in Lincoln has hadthe philosophy of regarding carers as fellowmembers of the healthcare team, sharing thecare of the patient.

There are a wide range of types ofsupport which carers’ might need, and awide range of organisations which mightgive that support. The carer could bereferred directly by the practice, or giventhe information to enable them to makecontact themselves.

In those cases where the practicemakes a referral to the local Carers’Centre, it is good practice for the centre towrite back to the GP acknowledging thereferral and indicating the support andassistance which the centre has been ableto provide to the carer.

York and Selby Carers’ Centre havedeveloped ‘condition specific’ contactcards for distribution to carers via GPs.These list approximately six to nine keyorganisations relating to that condition, ledby the Carers’ Centre.

Carers Resource (Harrogate & Craven)have practice agreements and provide acomprehensive service for their practices.They have demonstrated significant savingsof time for other professionals, increasedincome generated for the carers and apositive impact on carers’ health. Greenwichpractices offer well-carer health checks and acarers information pack. One section of thethree-part Leeds yellow cards given by thepractices to carers gives general informationabout services for carers.

As a practice nurse in Harrogate put it:

“It’s an excellent service. Patients Ihave referred in the past year haveoften come back looking as if a greatweight had been lifted off theirshoulders. They appreciate havingsomeone focus on them and theirneeds. It saves me loads of time havingsomeone else to provide emotionalsupport and give the practical ongoingsupport we can’t provide”

Statutory assessment of needsMany carers have a statutory right to anassessment of their needs by the LocalAuthority. Practices which are receivingcontractual payment for identifyingcarers are required to refer them forsuch assessments.

Carers Resource (Harrogate & Craven)have a contract with the local PCT which linksspecialist carer support officers with theSingle Assessment Process Teams, whichwork at the interface of health and socialcare, to ensure that carers’ needs are

addressed properly through this emerging newsystem. The Greenwich protocol identifies therequirement to refer carers for an assessment.

Advocacy and/or financialinformationSupport of this kind is usually available fromthe local Carers’ Centre, or the Citizens’Advice Bureau as well as relevant statutorybodies. Evidence of the impact of suchreferrals has been provided.

Carers in Hertfordshire undertook a surveyof carers who had been identified by local GPsto compare the outcomes for those who werein contact with Carers in Herts with those whowere notii. Twice as many carers in contact withCarers in Hertfordshire were well informedabout their rights compared with the lattergroup, and no less than five times as many hadhad a benefits check.

Carers Resource (Harrogate & Craven)provide this type of support. The Greenwichprotocol provides a list of local agencies, asdoes the Leeds three-part yellow card.

Short breaksIt is important to ensure that carers have theopportunity to live their own life, visit familyand friends, and, if they so wish, toparticipate in activities that are directed atimproving their own physical and mentalhealth. Many Carers’ Centres organise suchdiverse things as day trips for carers; horseriding; aromatherapy; beauty treatmentsand so on. Short breaks may be arranged bythe Social Services Department or a Carers’Centre or another voluntary agency.

Many Carers’ Centres provide support ofthis kind. For example, Sefton provides arange of activities as diverse as reflexologyand horse riding.

In Reading, the Primary Care Trust hasfunded a ‘breaks on prescription’ scheme,under which the GP can supply a voucher tocarers who need a break. The voucher can be


Good practice

exchanged with Crossroads – Caring forCarers who provide replacement care.

General supportCarers’ support groups may be organisedby the Carers’ Centre. The GP practicecan be a place with which carers readilyidentify and are comfortable with. For thisreason, it is a potentially suitable place onwhich to base a carers’ support group, orother non-clinical services for carers.

One to one support can usually bearranged by the Carers’ Centre, or by the GPpractice itself providing access to servicesthat may be already available, such ascounselling.

There is a monthly ‘carers drop-in’ atStreet Lane practice in Roundhay, Leeds forcarers of older people, where carers cancome for advice or just to share problems.Services such as aromatherapy massage arealso available.

The Harewood practice in Lincoln hasgiven meeting facilities to a carers forum forcarers who care for patients of the practice,but does participate directly in it, regarding itas the private forum of the carers.

In Lewisham there is a ‘communityprescribing project’ operated by localvoluntary sector agencies, to which the GPcan refer patients, who may include carers,for types of non-clinical support that thepractice is unable to provide directly, butwhich the GP thinks would be of assistance.

Referral to other GP practicesThis is relevant where the carer isregistered at a different practice to that ofthe cared for, and the carers role isidentified by the practice of the cared for.

The Greenwich protocol includes a formcalled ‘patient who is carer referral’ forcommunicating with other practices.

Changes within thepractice

General points This may be sub-divided into twocategories: firstly, changes to the routineservices that the practice offers to allpatients, to take into account thecircumstances of carers, and, secondly,new services which are specificallytargeted at carers.

These changes are more likely to occur iftwo things happen:-

i. All practice staff have undergonetraining in carer awareness.

Islington PCT is one of those which hasprovided carer awareness training to PrimaryHealth Care Team staff in conjunction with itslocal Carers’ Centre.

ii. Practices appoint a carer specialist orchampion to take ownership of thecarers register and propose andmonitor the implementation of carer-friendly policies and procedures. It iscommon practice for GPs and nurses,in particular, to have specialist roleswithin a practice, to improve thequality of services offered to itspatients. These are often related tomedical conditions, such as diabetes,or to particular groups of patients, forexample the elderly. It may beappropriate to consider carers as beinga specialism.

A note of caution is appropriate here. If (ii)is implemented without (i), there is adanger that carers issues will not be‘owned’ by all staff and will be seen asexclusively the concern of the specialist,which would be undesirable.

Almost all practices in Islington have acarer specialist and it is included in theGreenwich protocol where the ‘champions’attend a carers’ policy forum.

Changes to routineservicesAlmost all of the services which GPpractices offer can be made more ‘carerfriendly’ than has traditionally been thecase.

AppointmentsAppointments systems should recognisethe particular circumstances of carers,which may affect when they can come foran appointment, how long they can wait inthe surgery, or when they can ring up.The circumstances of each individual careris different and this should be recognisedby the practice staff.

The carer may also wish to discussissues around the health of the cared foras well as their own health. Indeed, theformer will often be affecting the latter ina significant way.

The Leeds carers protocol suggestsdouble appointments for carers so that theycan discuss the health of the cared for as wellas their own health. It also suggests thatcarers who have difficulty in makingappointments could be offered the otherwiseembargoed ‘book on the day’ appointmentsin advance.

When patients with an identified carer (orthe carer themselves) ring the Orton practicein Peterborough for an appointment, the staffare authorised to make special appointmentarrangements if necessary to fit in with thecarer’s situation.

Worcestershire Association of Carerssuggest a five-point plan for carer and caredfor appointments: advance booking;appointments when there might be least


waiting time build-up; appointments later inthe day; double appointments; appointmentsin downstairs rooms if cared-for mobility isimpaired. They also appeal for a recognitionthat carers are not being ‘difficult’!

Repeat prescription procedures These can cause problems for carers, ifordering by telephone is not permitted oris limited to particular times of day.Similarly, it may be difficult for carers topick up prescriptions.

The Orton practice in Peterborough hascertain times when repeat prescriptions canbe ‘phoned in but does not apply thisrestriction to carers. In similar vein, theGreenwich protocol specifies that thereshould be a separate time for carers to call.The Worcestershire Association of Carersasks that practices recognise that carersmight legitimately request advance or extraprescriptions to cover holidays or whenrespite care is being given.

Waiting roomsWaiting rooms nearly always lack privacy,which can cause problems for carers whoare looking after patients who find itdifficult to wait in public, or whosebehaviour can cause difficulties orembarrassment due to the reaction ofother patients. If accommodation permits,carers accompanying patients with theseneeds (for example, a child with autism ora patient with dementia) should be offereda smaller or quieter area to wait where theperson being cared for will not be affectedso much by the bustle of the waiting roomor the reaction of other patients.

A carer in Lewisham gave an example ofthe difficulties carers can face:

“There was an instance a few monthsago when I had to see the doctor on apersonal appointment for me and it

was the only appointment that I couldget and I had to take xxx with me butthere was a big hoo-ha because theysaid can he stay in the waiting roomwhile I go in because I didn’t want himin there and they were saying ‘well, willhe be okay? We can’t takeresponsibility for him’. And I said ‘butwhat can I do?’ In the end they didagree to let him go behind the screenand sit with them there but it was quiteunnerving for me because I didn’tknow what was going to happen and itwas okay but you know it was like theydidn’t know I was a carer when theybooked the appointment.”

Home visitsIt may be appropriate to undertake homevisits for some carers, or the person theycare for, to take account of the caringsituation even if the particular presentingmedical condition might not normallyindicate that this is appropriate. This shouldbe offered automatically in appropriatecases and carers should not be made to feelguilty if they make such a request.

The Greenwich protocol requires asensitive approach, and suggests that longertimes be allowed for such visits to enable thecarers’ health to also be examined.

Health checksOffering health checks or carers clinicsrecognises the potentially harmful effectthat an extensive caring commitment canhave on the health of the carer, and thedesirability of keeping the carer’s healthunder regular review.

A project in Sedgefield combines a carers’health check with ‘flu jabs and theopportunity to meet with a support workerfrom the Carers’ Centre, to look at other waysin which they might be helped . One carer

commented “I nearly didn’t come as I didn’tthink I could spare the time, but I’m reallypleased now that I did...it made me realisethat my health is important too”. The pilot hasproved to be very successful and the Carers’Centre is now hopeful of rolling it out toother practices.

Greenwich practices offer well carerhealth checks and the PCT has produced acarers health check risk assessment actionsheet.

In North East Leeds, the PCT has fundedtwo GP practice-based Older People andCarers Support Nurses with, as the nameimplies, specific responsibility for carers aswell as the older patients. They assess needand work with a network of agencies (bothstatutory and non-statutory) to try to meet it.The scheme, which started as a pilot project,has been evaluated and found to be of valueto patients, carers and the policy objectives ofthe NHS.


Good practice

Strategic workIt is important to examine the potential fordevelopment at the more strategic levelsof the new PCTs, SHAs and theDepartment of Health itself.

The role of PCTs – the GPcontractThe national GMS (General MedicalServices) GP contract, gives three points(management indicator nine), out of 1050,in the Quality and Outcomes Framework(QOF)iii for the establishment of a systemto identify carers and refer them to theLocal Authority for an assessment.

Although this is a disappointingly lownumber of points, the number of practicestaking up this option has been very high.There do however appear to be two otherproblems:

1. Because the points available arerelatively low, this indicator hasprobably not been audited as robustlyas some others; and

2. It refers to a process, not an outcome.As shown in section on thedemonstration projects (section four),it is possible to gain the points for thiswhilst still only identifying a smallproportion of carers. It should beaudited against the number of carersidentified compared with theexpected number.

Some areas have however taken welcomeinitiatives in this area.

In Greenwich, Neighbourhood RenewalFunding (NRF) has been used to support apilot project around the Greenwich protocolwhich enables carer support to be deliveredin three phases: basic support, intermediatesupport and intensive support. Two practicesare working at each level, and targets have

been set to measure the outcomes. The NRFfunding has also been used to providepublicity in all surgeries.

Worcester PCT have included the use of aGP registration card provided by the Carers’Centre in their monitoring of GP practicesagainst QOF management standard 9.

There are other opportunities toencourage progress in this area. Somepractices have locally-negotiated PersonalMedical Services (PMS) contracts. It isopen to PCTs to negotiate with those GPsfor the inclusion of systems and servicesto improve the level and quality of supportgiven to carers. Similarly, the new GMScontract has within it the option ofpayments for locally or nationallydetermined ‘enhanced services’. Thisshould be one focus for local discussionswith PCTs and Strategic Health Authoritiesabout how to improve primary caresupport and services for carers.

The Scottish Executive have produceda framework for ‘Enhanced Services –Services for Carers’ which comprises thefollowing specifications:

a. Produce and maintain a register of peoplewho are carers. In addition medical noteswill include a flag to indicate that thisperson is a carer; and

b. Effectively liaise with relevant outsidelocal carer agencies and social workservices. This will involve eachparticipating GP practice :i. Identifying one person from within

the practice team to act as anappropriate liaison officer for thepractice with relevant local careragencies and social work services;and

ii. Agreeing a referral process forreferring carers from the practice torelevant outside carer agencies andsocial work services, to ensure carerscan access appropriate information

and support from theseagencies/services at an early stagein their caring role. This will includeco-operating with relevant outsidelocal care agencies in any initiativedesigned to alert carers to thesupport they offer.

The role of PCTs – servicedevelopment PCTs are responsible for establishingclinical governance protocols for thedelivery of services by GPs. These shouldaddress the extent and manner in whichthe role of carers is recognised andsupported. In other words, the principleswhich have been incorporated, forexample, into the National ServiceFramework for Mental Health should beincluded in other clinical areas. Similarly,arrangements for appraisal of GPpractices could include elements relatingto this area.

PCTs provide training programmesfor practice staff. This training shouldinclude carer awareness, how toestablish carers’ registers at practicelevel, and how to support carers andimprove the range and quality of serviceoffered.

PCTs have discretion in the financialallocations they make and the types ofservice development that they support.PCTs should recognise the relevance ofsuch projects to NHS objectives and thevalue of supporting them, financially andwith longer-term contracts.

PCTs can also assist in other ways.For example, they can organise localconferences or listening events to givelocal carers an opportunity to contributetheir views and experience to debates onservice improvements.

The old star rating system has beenreplaced by a new system of CoreStandards based on self-assessment


which the Board has to sign up to. Two ofthose are as follows:

• Standard C14c – Healthcareorganisations have systems in place toensure that patients, their relatives andcarers are assured that organisations actappropriately on any concerns and,where appropriate, make changes toensure improvements in servicedelivery; and

• Standard C17 – The views of patients,their carers and others are sought andtaken into account in designing,planning, delivering and improvinghealthcare services.

There are examples of PCTs adoptinggood and innovative approaches in thisarea some of which would contribute tomeeting these standards:

The Commission for Healthcare Improvement(as was) in its report on Airedale Primary CareTrust, identified the PCT’s work with carers asan area of ‘notable practice’, describing it asfollows: ‘This innovative project works inconjunction with Social Services to map andexplore how carers are supported and needsare met. This encourages practices to recordcarers’ details on patients’ records’.

Carers In Herts undertook a ‘carerschallenge audit’ of the eight PCTs in theirarea using a quality assurance tool, andproduced a report back to each PCT. Itdeveloped a Red/Amber/Greencategorisation for PCTs.

Wandsworth PCT has employed a carersdevelopment worker. That worker was ableto ensure that the role of carers waschampioned and recognised in thedevelopment of a Long Term ConditionsStrategy which included five cross-cuttingrecommendations to improve support tocarers which will apply to a range of

organisations and providers. Redbridge PCT have supported a Carers’

Centre project called ‘Carers ChoosingHealth’ aimed, as its name implies, atimproving carers’ health.

Swindon PCT has developed a generic setof five standards for support for carers to beapplied to all services provided andcommissioned by the PCT. These coverinformation, staff training, record keeping,carers ‘leads’ and ‘champions’ attendingmeetings at the Carers’ Centre, appointmentsystems, carer health checks, carerinvolvement in service development andevaluation, and carers support groups.

Leeds Carers’ Centre Health Project,working with five PCTs in Leeds, has run aCarers Conference, three mini conferencesand seven listening events as part of theproject’s strategic work on raising awarenessof carers issues and providing training forprimary care staff to enable them to identifyand support carers.

Carers trainingThe National Strategy for Carers madeclear that “the NHS must help carers tolearn the necessary skills so that they cancare without risk of injury to themselves”iv.The strategy also noted that this can beparticularly important at the start of caring.Untrained new carers are sometimesthrown into a situation that would neverbe allowed for paid care staff. The CarersSpeak Outv survey found that as many assix out of ten carers did not have sufficientinformation, help or support with the tasksof moving, lifting and handling the personcared-for. National statistics on healthsymptoms among carers also reveal thatone in four carers who were caring morethan 50 hours a week suffered physicalstrain. However, it is about much morethan moving and handling.

We are very pleased that Our health, ourcare, our sayvi has accepted therecommendation in Primary Carersi that anExpert Carers Programme (ECP) should beintroduced, building on the model of theExpert Patients Programme.

It is appropriate to identify some goodpractice about how this should beimplemented, which emerged from amapping exercise of 266 organisationsinvolved with carers training, which ThePrincess Royal Trust for Carers recentlyundertook on behalf of The Department ofHealth:

• Carers should be involved in decisionsabout the content and delivery styles ofany programmes;

• The programme should include theconcept of the carer exercising choiceabout the amount of caring which isundertaken;

• Drawing from the Expert PatientsProgramme the concept of carersthemselves doing the training, and beingtrained as trainers, is important;

• Whilst the similarities with the ExpertPatients Programme are acknowledged,it is also important to recognise thedifferences for carers training. Theformer is about caring for oneself, whilstthe latter is both about that and caringfor someone else;

• It is important that it should not be toohealth focused, or be seen to mainlyaimed at reducing the demands on theNHS (even though effective support forcarers will undoubtedly do that) Somecarers have already expressed suspicionof this;


Good practice

1. ‘Carers’ should not be seen as anhomogenous group. There are greatdifferences in carers needs, based ontheir personal situations, and thelongevity and nature of the caringneed, which should affect both thecontent and delivery style of trainingprovided; and

2. The special circumstances of youngcarers, in particular, should berecognised.

The mapping exercise revealed a widerange of possible areas for inclusion inthe ECP:

• Moving and handling;• Carers’ rights;• Coping with stress/coping strategies;• Services for carers;• Information for carers;• Communication skills;• Looking after yourself;• Advocacy;• First Aid; • Medication;• The effect of caring on other

relationships of the carer;• The changed relationship with the cared

for; • Bereavement counselling;• Training for life after caring including

new skills or refresher courses;• Influencing local decision-

making/influencing publicperception/acting as a carers’representative;

• Starting/running a local carers group;and

• Palliative care.

Many Carers’ Centres are already involvedin the training of carers, covering a widerange of areas often with the support oftheir PCTs.

Brent Carers Centre held information andsupport events for carers, covering a widerange of areas including specific advice oncaring for people with particular conditions;lifting and handling; first aid; nutrition;managing stress; exercise and relaxation.These courses were either held on one day oronce a week in the afternoon over threeweeks. Carers Resource (Harrogate &Craven) holds contracts with its PCT formemory clinics and palliative care training.Wandsworth Carers’ Centre is involved witha local back care project

i Focus on Carers and the NHS – identifying and supporting

hidden carers. Good Practice Guide, The Princess Royal Trust

for Carers, 2003

ii Identifying and supporting carers through the GP surgery-what

difference does it make, Carers in Hertfordshire 2005

iii Department of Health, Quality and Outcomes Framework

Guidance, 2004

iv Caring About Carers: A National Strategy for Carers, HM

Government, 1999

v Keeley and Clarke, Carers Speak Out – report on findings and


vi Department of Health, Our health, our care, our say: a new


vii Keeley and Clarke, Primary Carers – Identifying and providing


Carers, 2003


Conclusions andrecommendations

Section Six:

In the final section of Primary Carersi we presented threechecklists of recommendations – one for GPs and PrimaryHealth Care Teams, one for Primary Care Trusts and one forthe Government and Strategic Health Authorities. These wereseen as a successor to the 5-point checklist set out by theGovernment in its National Strategy for Carers in 1999ii.

Within the last few months theGovernment’s White Paper Our health, ourcare, our sayiii has committed theGovernment to ‘a new deal for carers’.

The opportunity under the new GPcontract for GPs to be paid, albeit arelatively small amount, for theestablishment of a carers register toenable carers to be referred to the LocalAuthority for an assessment has beenoperative for a year, and the large majorityof GPs have taken this up. The new CoreStandards assessment for PCTs requiresthem to consult carers, among others, onthe provision of services.

Primary Carersi concluded that work atthe practice level to support carers isunlikely to become embedded in all areasunless there is support andencouragement for this from both the

local PCTs and the Government and SHAs.Without this, development is always goingto be patchy and inconsistent, and largelydriven by local enthusiasts and champions.Accordingly we have also produced 10-point checklists for both PCTs and theGovernment and SHAs.

We have updated the three checklists inthe light of developments since PrimaryCarersi was written. In fact, many of therecommendations remain similar, if notidentical, because the issues and deficienciesremain the same in many areas.

A new checklist for GPsand Primary Health CareTeams

1. How many of your patients who

are carers, and patients who have acarer, have you identified? Are youimplementing all of the methods forcarer identification outlined in thereport?

Identifying carers who are patients andpatients who have a carer remains anessential pre-condition for any effectiveimprovement in the support given to carersby primary care services. In the lastchecklist we asked whether practices hadidentified their patients who are carers orwho have a carer.

We have re-phrased the question. Wehave done so because although under thenew contract, the large majority of practiceshave claimed the relatively small amountavailable for establishing a register andreferring carers for assessment, there isstrong evidence to suggest that the numberof carers identified is still only a smallproportion of the number of carers outthere. Even GP practices with good and wellestablished links to Carers’ Centres are notalways managing to identify even all thecarers with substantial needs. Identifyingsome carers may be enough to meet therequirements of the new contract but is notenough to make a real change to those


Conclusions and recommendations

carers’ lives. If we take a typical five-doctor practice looking after about 8000patients, about 800 of these will be carers,of which about 270 will be caring for morethan 20 hours a week, including about 160who are caring for more than 50 hours aweek – considerably more than a full-timejob. These figures should be used as abenchmark by practices to self-assess howwell they are doing in identifying carers.This report outlines many methods ofidentifying carers which should beexamined by practices.

2. Do you refer carers to localsources of advocacy, help andsupport, including an assessment bythe Local Authority and Carers’Centres or carers support groups?

The contractual requirement under theQOF framework is to refer carers’ to theLocal Authority for an assessment of theirneeds. It is assumed therefore that this ishappening in those practices whichreceive this payment but it needs to bemonitored. A survey carried out by ThePrincess Royal Trust for Carers in 2002iv

found that over 70% of carers who werecaring for more than 50 hours per weekhad not had an assessment of their needs.Yet, among carers who had had anassessment, over half had seen a changeto the support or services that theyreceived. Heavily committed carers inparticular should have an assessment.

But whilst this assessment is veryimportant, it is only part of the picture.Carers cope with a wide range ofchallenges and difficulties and may have avariety of support needs, not all of whichmay be picked up by the formalassessment. Also, there is no need to waitfor that assessment before putting carers intouch with sources of support to meet theirneeds which will vary between carers at

different stages of caring. The network ofCarers’ Centres run by The Princess RoyalTrust for Carers and other agencies canoffer opportunities for advocacy and helpwith benefits or other financial information.The chance to meet others in the samesituation and to be offered services such asshort breaks, ‘pampering’, counselling oropportunities for training. Also, some GPpractices do not have in-depth specialistknowledge or expertise in some conditionswhich give rise to caring situations such aslearning disabilities or mental illness. Thereare national and local organisations that dospecialise in these conditions and canprovide information and support to carers.Practices that link with other organisationsin this way can also benefit by keeping upto date with developments in knowledgeabout the condition.

3. Do you take carers’ special needsinto account in terms of the way youallocate appointments?

Appointments can be a particular problemfor carers who often have less flexibilitythan other patients about when they canattend for an appointment, because it mayneed to be timed to fit in with their caringresponsibilities (thus an early morningappointment may often be unsuitable) orwhen they can arrange alternative care. Forthe same reasons they may have lessflexibility than other patients to wait if asurgery is running late. There is strongevidence that the health of carers isadversely affected by their caring role.Giving carers priority in appointments mayhelp to preserve their health and that of theperson they care for, and in certaincircumstances can avoid hospitaladmissions. There has been a centrally-driven policy priority to ensure that patientscan see their GP within 48 hours or ahealthcare professional within 24 hours. In

some cases this has led to problems ofpatients trying to get through on the phonein the early morning to try to obtainappointments which are ‘released’ thatmorning. This can be much more difficultfor carers to do. It is significant that in ourdemonstration projects, this is one area inwhich there was not improvement asperceived by the carers. We are notsuggesting a prescriptive model here, butmerely that practices should be carer-sensitive in the way in which they devisetheir systems, and flexible in their approachto the needs of carers.

4. Do you take carers’ particularhome circumstances into account inyour procedures for issuingprescriptions and for home visits?

Prescriptions is another area where carersoften experience particular problems.They often have less ability than otherpatients to drop off or collect prescriptionsat the surgery and would benefit frombeing able to phone in prescriptionrequirements and being advised abouthow to have the prescription collected andmedication delivered for them. Similarly,the home circumstances of the carer maymake it difficult for them to attend surgeryfor their appointment, even if thecondition itself would not normally merit ahome visit. GPs and their staff should beprepared to respond sensitively to this. Itis also good practice to take along themedical records of the carer when makinga home visit for the cared for, and checkon the carer’s health at the same time.

5. Do you take carers’ particularneeds into account in yourarrangements in the waiting room?

A further problem for carers identified insurveys and in our demonstration projects


is the waiting room arrangements.Sometimes this may be due toembarrassment about the behaviour ornature of the medical condition of theperson being cared for and the reactionsof other patients to them. Anotherproblem is the lack of confidentiality whentalking to reception staff. Although this isnot confined to carers, it is probably amore frequent problem for them than forother patients, particularly if they areasking for special arrangements. Changesto the physical environment are needed totake into account the circumstances of,say, patients with autism or dementia orthose with equipment such as wheelchairsor oxygen bottles. This is a longer-termissue but sometimes small changes can bemade which can make a big difference,such as using existing smaller rooms forpatients to wait in when the generalwaiting room is less suitable for them.

6. Do you check carers’ healthwhenever a suitable opportunityarises, and at least once a year?

The White Paper iii states that the NHS willdevelop a new Health ‘Life Check’ serviceto help people particularly at critical pointsin their lives. Given the evidence aboutthe adverse effect on carers own health ofthe caring role, and the often seriousconsequences of a breakdown in carers’health, it makes sense for the NHS tomonitor carers’ health, just as it does forother groups such as diabetics or thosewith heart problems. Some practices haveintroduced such checks, sometimes incarers’ clinics which are combined withadvice being given on other areas by aCarers’ Centre worker. Carers areregularly in touch with the NHS, havingcontact with GPs, district nurses andcommunity nurses. While many of thesecontacts may be about the health needs of

the person cared for, they also present anopportunity for the primary careprofessional to review the carer’s ownhealth and their ability to continue caring.

7. Do you ask patients who havecarers whether they are happy forhealth information about them to betold to their carer and do you givecarers information about thediagnosis, treatment and prognosisfor the person they care for andabout medication and its side effects?

In the Carers Speak Outv survey in 2002many carers told us that they were notbeing given adequate information aboutthe diagnosis, treatment, medication orfuture development of the illness ordisability of the person they cared for.

While there may be issues of patientconfidentiality in some cases, it is moreoften a problem of GPs and other primarycare professionals not being sufficientlypro-active in seeking the patient’s consentfor this key information to be passed on tothe carer. The evidence suggests thatcarers who are given more informationfeel more positive about their caring roleand the influence they have over servicesfor the person they care for. If the oft-repeated mantra that carers are partners incare is to mean what it says, this is anessential requirement.

8. Do you arrange for your staff tohave information and training tomake them ‘carer aware’ and toensure that all relevant practicesystems and protocols reflect theneeds of carers? Will you identify amember of staff to take the lead oncarers’ issues?

One of the best ways to ensure thatpractice systems reflect the needs of

carers is to give all staff – clinical andadministrative – training in carerawareness. The local Carers’ Centre willoften be more than happy to do this. Thiscan be very effective in promoting theopportunistic identification of carersarising out of the routine contacts thepractice has with its patients. This canthen be followed by a review of practiceprotocols and procedures, preferably withsome direct involvement from either theCarers’ Centre or from carers within thepractice, to ensure that they properlyrespond to the needs of carers. We havefound repeated evidence of the impact ofsuch awareness training and themotivation of staff which can result from it.This should be complemented by theappointment of a member of staff to takethe lead on carers’ issues, and ensure thatall aspects of the practice organisation arecarer friendly.

9. Are you willing to activelyencourage the involvement of localCarers’ Centres and carers’organisations in the work of yoursurgery?

Many practices have a regular visit from acarers’ worker from the local Carers’Centre or organisation to provide adviceand support to carers in a clinic, and havefound this an invaluable aid to their workand of great value to their patients whoare carers. Some GP practices have alsoestablished practice-based supportgroups, which complement servicesdelivered in the surgery by the localCarers’ Centre. In some cases practicestaff participate in the group, whereas inothers the surgery makes a room availablefor the group, but does not participatedirectly in it. In other areas the carerssupport group is based in the local Carers’Centre. The best practice depends on



local arrangements and what carers find tobe of value. The important thing is torecognise that the local GP practice canoften be an appropriate place for suchdevelopments.

10. Will you use the opportunitiespresented by practice basedcommissioning to develop servicesand support for carers?

Practice based commissioning will giveGPs and other members of Primary HealthCare Teams greater influence and controlover how their local PCTs use resources.Potentially this presents a powerfulopportunity to improve support andservices for carers. This can apply not onlyto services commissioned from other partsof the NHS, but from other agencies aswell. For example, greater priority couldbe given to the commissioning of servicesfrom the local Carers’ Centre, some ofwhich might be delivered ‘on-site’ at localsurgeries.

A Checklist for PrimaryCare Trusts and StrategicHealth Authorities

1. Do you produce a local protocolfor systems within primary care toidentify carers and link them tosupport, and do you commissionwork to set up such systems withinprimary care?

Support cannot be offered to carers whohave not yet been identified. Primary careis one of the most important andfrequently used avenues by which carerscome into contact with statutory agencies.It is important that systems are set upwithin primary care to identify carers andlink them to support. Identification by

itself is of limited value because it can onlyaffect the services offered by the practiceitself (and may not even do that).

It is unrealistic to expect the practicesthemselves to be aware of and develop allthe available methods. A number of PCTshave developed local protocols to assistpractices to do this or have adoptedprotocols developed by their local Carers’Centre. Other PCTs have produced localstandards against which to assesspractices. There is also no point in re-inventing wheels either between PCTs orbetween practices.

Despite the obvious value of suchdevelopment work to the NHS, many ofthe local primary care projects that havebeen established to do this have receivedno funding from the NHS, and the fundingfor some of those which have, has beenwithdrawn or not renewed. It is veryimportant that funding is planned over asufficiently long period to enable theschemes to become properly establishedand to cover all the GP practices.

2. When monitoring theimplementation of QOF managementstandard 9 relating to theidentification of carers, will youexamine the numbers of carersidentified as well as the process?

The standard refers to the practice havinga protocol for the identification of carersand their referral for a Social Servicesassessment. As written, this is rathervague, and makes no reference to theeffectiveness of the protocol in identifyingcarers. Our research has indicated that it ispossible to have a protocol in place, butstill not identify a significant proportion ofthe carers.

There is a danger that audit andmonitoring will examine the processesrather than their outcome. There is a

further danger that because it is onlyworth three points out of 1050 in theoverall framework, that it is not given thesame priority for detailed audit as otherelements in the framework.

We know approximately how manycarers to expect in a given practicepopulation and this should be used as thebenchmark information against which toassess practices’ performance.

3. Do you involve carers’representatives, as partners, in theplanning of local services?

PCT Boards are now required to confirmtheir compliance, or otherwise, with anumber of Core Standards. Two of theseare as follows :

Standard C14c – Healthcare organisationshave systems in place to ensure that patients,their relatives and carers are assured thatorganisations act appropriately on anyconcerns and, where appropriate, makechanges to ensure improvements in servicedelivery.

Standard C17 – The views of patients,their carers and others are sought and takeninto account in designing, planning,delivering and improving healthcare services.

These are demanding standards, and theinclusion of carers in both of them issignificant. Standard 14c is generallyinterpreted in the context of responses toformal complaints. However, ‘concerns’should be wider than formal individualcomplaints, and should include views onoverall service provision and developmentand the extent to which it recognises andresponds to the needs of carers. Webelieve that when the HealthcareCommission publishes the results of thisquality assurance exercise, there will bemany places in which concerns have been


expressed about the inadequate responseto carers’ issues, but where the PCT hasdeclared itself compliant with C14c.

Standard C17 requires PCTs to seekthe views of carers and take them intoaccount. Again, there are many PCTswho do not do a great deal to activelyseek the views of carers but we predictthat the overwhelming majority of PCTswill have declared themselves compliantwith these standards.

This is important because there aremany areas in which the input of carerswould be valuable in local implementationschemes and other planning forums.These should include, for example, theplanning and design of new primary carefacilities through the LIFT programme;service protocols which should takeaccount of the special needs of carers;and system planning to avoid hospitaladmissions and delayed discharges.Carers have a specific and uniquecontribution to make, based on theirexperiences, which can add value to theprocess and make a positive contributionto the achievement of NHS objectives.

4. Do you make assessments of thelevel and quality of support forcarers provided by the primary careservices that you commission anddo you incorporate support forcarers into your local protocols forclinical governance and GP andpractice appraisals ?

PCTs have an important role in promotingand initiating good practice. If a PrimaryCare Trust relies solely on those GPs whoare already interested in and committed tothe needs of carers to take this agendaforward, progress will be much morelimited than it need be. Also, widevariations between practices will continueto exist, creating further health

inequalities for carers. PCTs should usetheir levers to review progress and wherenecessary encourage practices to changetheir ways of working.

The PCT should build up a picture ofwhat is happening for carers in its area byasking those from whom it commissionsservices to provide information about whatthey are doing to support carers. Withsuch an assessment, it will be possible tomeasure progress and to benchmark yourarea against other comparable areas. Theprovision of such baseline data is alsoessential for monitoring the impact of newinitiatives. PCT staff may themselves becarers and they could be included, both inthe assessment and to give input to ensurethat family-friendly policies reflect theneeds of staff who are carers.

It is important to look at the waypractices deliver their day to day services,and the extent to which that recognisesand responds to the special needs ofcarers. Appointments, prescriptions andwaiting room arrangements are three suchareas. We have identified these in thechecklist for practices but it is importantthat PCTs give comparable priority tomonitoring these areas as is given to otherservice delivery objectives, such asmeeting the targets on the ability to see adoctor or healthcare professional within48 or 24 hours. For carers, these issuescan be just as important as the more highprofile targets.

5. Do you use the flexibility in PMScontracts and the options forenhanced services in the GMScontract to encourage and rewardGPs to extend and improve servicesfor carers?

The contractual arrangements with GPspresent opportunities on a local basis tonegotiate and agree with practices about

the introduction of initiatives to extendand improve practice-based services forcarers. This might include a range ofthings, such as ‘Well Carers’ clinics or theestablishment of dedicated nursingsupport to patients and their carers.

6. Do you commission services tosupport carers from a local Carers’Centre or other voluntary orstatutory agency?

Our research on this project and onprevious ones leaves us in no doubt thatcarers find the range of services offeredby local Carers’ Centres and othervoluntary agencies to be immenselyvaluable in supporting them. Theseinclude diverse services such as financialand benefits advice, counselling,alternative care, training and a variety ofactivities which help to relieve stress.Various projects have provided testimonyto the value of such support and services,some of which can be offered in the GPsurgeries. Such support can contributevery positively to the maintenance of thecarer’s health and in many cases actuallyprevent a breakdown of the caringsituation, which would lead to moreservices being provided by the NHS andother statutory agencies.

Despite this, the funding for such workis often short-term and insecure, leadingto failure to develop its full potential, keystaff leaving for other jobs and anoverload of cases for the staff involved.There has been evidence within the lastyear that such work can be particularlyvulnerable during periods of financialpressure. We would recommend thatPCTs take a longer-term view whenassessing the value of this work and relateit to other policy objectives such asavoidance of hospital admissions.



7. Do you include carer awareness inthe training you offer to members ofprimary care teams and encouragepractices to have a ‘carers lead’?

PCTs support the training anddevelopment of GP practice staff, eitherfinancially and/or through direct provisionof training. This is a significant element intheir role of developing primary care. It isimportant that staff are provided withtraining in carer awareness, along with allthe other clinical and administrative areaswhich constitute the development ofquality services. Many practices havefound that it is valuable to have a leadmember of staff responsible for carersissues. All of this will encourage theinterest in, and commitment of, practicestaff to their projects for identifying carersand will also positively influence the waythey do their job on a day to day basis.

8. Do you include carer awareness inthe training for your own staff,members of the PCT Board andProfessional Executive Committee?

It is equally important for PCT staff andanyone involved in strategic planning anddecision making to receive training incarer awareness. This should apply at alllevels.

9. Do you ensure that the needs ofand services for carers are consideredby the partnership with the LocalAuthority and other agencies ?

A key theme of Our health, our care, oursayiii as it has been of numerous otherrequirements and guidance fromGovernment has been the need for theNHS, Local Authorities and the non-statutory sectors to work in partnership.This is probably even more true in the area

of support for carers than in many others.The relationship between PCTs and theLocal Authority needs to be much morethan simply getting GPs to refer carers foran assessment, as implied by the QOFManagement Standard 9. There should bean integrated strategy for carers in eacharea, to which all agencies are signed up.The 2004vi Act places a duty on primarycare to give ‘due consideration’ to arequest from Local Authorities for theplanning or provision of services to carers.

10. Do you ensure that the needs ofand services for young carers areincluded in strategies for children’sservices ?

PCTs are also required to work inpartnership with Local Authorities andother agencies, through Children’s Trustsand other organisational mechanisms inthe development of integrated strategiesfor children’s services. Young carersshould be identified as a specific group ofchildren at risk, and services and supportshould be planned accordingly. Thereshould be a specific strategy for youngcarers in each area. It is important thatthere should be close links between thatstrategy and the adult services, who arelikely to be involved in many of the familycircumstances of young carers, and thatthe new organisational separation betweenchildren’s and adult services provided bythe Local Authority should not work to thedetriment of young carers.

A checklist for theGovernment

1. Will you strengthen the system forperformance managing and ratingPCTs to give clearer recognition tothe importance of providing support

for carers and introduce a statutoryduty on PCTs to promote the healthof carers?

Although carers are mentioned in anumber of the quality assurance standardsfor PCTs used by the HealthcareCommission, none of them is exclusivelyrelated to services and support for carers.This does not help to promote themessage of the National Strategy forCarers or the philosophy of the recentWhite Paper. PCTs need incentives andencouragement to give greater priority tothis work. It is recommended that thequality assurance framework be reviewedin this light.

The provisions of the Bill introducedinto Parliament by Barbara Keeley M.Pwould impose a statutory duty on PCTs topromote and safeguard the health andwelfare of carers, and we believe that thisproposal, if implemented, would be ahuge step forward for carers.

2. Will you ensure that Non-Executives appointed to the PCTsinclude people who can demonstratean understanding of carers issues?

It is important that those ultimatelyresponsible for the work and performanceof PCTs include people who have anunderstanding of carers issues. The NHSin Wales recognised this by having acarers representative on each HealthBoard. It is hoped that those appointed tothe new PCTs will include a significantproportion of people who have thisknowledge and experience. If this provesnot to be the case, it is recommended thatthe person specification for futureappointments be amended accordingly.

3. Will you strengthen and widen therequirement to identify carers and


set a new date by which GPs,members of primary care teams andSocial Services staff are asked toidentify carers in line with thenational priorities guidance issued inSeptember 1998?

The Government originally set a target dateof April 2000 for the identification ofcarers. This was subsequently deferred, butno new date has been set. As well assending out a negative message about theimportance of this work, this deferralcaused great uncertainty about the workthat was started. It is important to set a newdate as soon as possible.

This should be considered inconjunction with the new GP contractwhich was introduced in 2005. This gave anoptional three points (out of 1050) for GPswho established systems for identifyingcarers and referring them to the LocalAuthority for an assessment.

Even though the large majority of GPshave opted to establish such a system andare being paid for so doing, we do notbelieve that this is adequate and should bemodified in three ways :

1. The number of points should beincreased, or;

2. It should include referral to otherrelevant agencies as well as for LocalAuthority Assessments;

3. It should be widened to relate to theservices provided by the GPs themselves.

In this context, we support the provisionsof Barbara Keeley’s Bill to require PCTs to‘ensure that effective procedures exist toidentify patients who are carers’.

4. Will you ensure that all relevantNational Service Frameworks include astandard relating to the recognitionand support of carers?

Standard six of the National ServiceFramework for Mental Health relatesspecifically to carers. Other relevant NSFs,such as that for Older People, mentioncarers but do not include a specificstandard relating to them. It is importantthat the role of carers is specificallyrecognised in NSF standards and is notjust referred to in less specific terms.

5. Will you consult widely and ensureflexibility in the implementation ofthe Expert Carers’ Programmeheralded in the White Paper?

In the checklist in Primary Carersi we calledfor a national Expert Carers Programme.Those directly involved with carers issueswill be delighted that the Government hasagreed to do this. It is important torecognise and support the role of carers,given the extent to which the NHS andother statutory services actually rely on theknowledge and experience of carers in themanagement of many chronic conditions.Part of that support involves training. Butit is important to have flexibility in theimplementation of this programme.

In the Good Practice section of thisreport we have identified a range of issueswhich need to be considered when theExpert Carers Programme is formulatedand we recommend that these are fullytaken into account.

6. Will you set targets for theestablishment of carers’ healthchecks in primary care?

As outlined in the White Paperiii

‘spearhead PCTs’ will pilot NHS ‘LifeChecks’. It is now firmly established thatthe health of carers, particularly those witha heavy caring commitment, is likely tosuffer as a result of their caring role. Theeffects can cover a diverse range of

conditions, some of which were identifiedby the carers in our latest study and arelisted in Section 4: The DemonstrationProjects. Maintaining and improvingcarers’ health is correct in principle. It isalso a cost-effective way of maintainingthe essential support for the cared forperson. It can reduce hospital admissionsor other forms of alternative care.Therefore it makes sense for the NHS toprioritise this area.

The National Strategy for Carersii

identified the importance of establishingregular health checks for carers. This istaking place in some practices but thereare insufficient incentives for it to be verywidely implemented. If primary care is togive appropriate priority to the monitoringand improvement of carers’ health, thereneeds to be a framework of financialrewards payments and targets, analogousto those given for other target groups ofpatients, such as those suffering fromdiabetes or heart disease. The GPcontract should be amended to providesuch incentives. It will be necessary to settargets for the introduction of astructured programme of health checksoffered to carers, and guidance on howthis can be done.

7. Will you ensure that PCTs andlocal authorities are funded toimprove and extend support andservices for carers in primary care?

Initiatives to support carers, as identifiedin the National Strategy for Carersii inPrimary Carersi and in this report, need tobe properly funded if they are to beeffective. It is appropriate that this workshould be developed as a partnershipbetween the NHS and Local Authorities,because it impacts on both the demandfor services and the statutory role of both.

Pooling of budgets under new



partnership arrangements should assistthis. An effective strategy for carerscannot be developed by either the NHS orthe Local Authority in isolation from theother. It is important that the resourcesdevoted to supporting carers do not sufferas a result of the Carers’ Grant no longerbeing ring-fenced.

8. Will you ensure that there isfunding to introduce pilotprogrammes to identify the mosteffective ways of improving carers’health, and to encourage thedevelopment of carer-friendlyservices in primary care?

This is an area in which innovativeschemes should be encouraged and thelearning disseminated. Many of theprogrammes and projects run by ThePrincess Royal Trust Carers Centres haveinsecure and short-term funding. At timesof financial pressure, they often do notreceive the priority they merit, oftenresulting in high staff turnover. There is anargument for a national programme ofsuch schemes, perhaps as part of the NHSresearch programme.

9. Will you run a national publicityand awareness raising campaign toencourage carers to identifythemselves as such to their GPs?

The Government undertakes a lot ofnational campaigns to promote itspriorities, including many in the area ofhealth promotion. A national campaign is acost-effective way of getting the messageacross, both because it avoids theinefficiency of replicating campaignplanning and design work across thecountry, and it gives a clear message ofthe importance attached to the area by theGovernment. We believe that a national

awareness campaign targeted at carerswould be a powerful tool in taking thisagenda forward. However, it must, ofcourse, be done in conjunction with theother recommendations in this report toavoid raising expectations from carers thatcannot be met.

10. Will you introduce into legislationthe proposals contained in BarbaraKeeley’s Bill to require GP practices totake the needs of carers into accountin the provision of their services?

Further impetus is needed to achieve realchange in the way these services aredelivered. Although we have identifiedexamples of good practice, these are farfrom universal. There is a need to requirePCTs to ensure that the needs of carersare taken into account in the operation ofappointments systems, prescriptionprocedures and waiting roomarrangements. Legislation would be aneffective way of ensuring this, but if this isnot possible, then the performancemanagement framework should be usedrobustly for this purpose.

In conclusion, we repeat thecomments we made at the end ofPrimary Carersi. There has been muchlearned already about how to identifyand support carers in primary care. Itis important that we continue tolearn from existing projects and tobuild upon the progress alreadymade, and above all, to translate thislearning into real and permanentchange in services throughout thecountry, not just in isolated pocketsof good practice. Only in this waywill the commendable aspiration ofthe latest White Paperiii to give a newdeal to carers become a reality. Theserecommendations are a key step

towards giving carers the supportwhich is in the interests of the NHSto provide and which carers deserveand we commend them to decision-makers at every level. Let us makethe ‘forgotten army’ of carers a‘recognised, valued and supportedarmy’ within health and social care.

i Keeley and Clarke, Primary Carers – identifying and providing


Carers, 2003

ii Caring About Carers: A National Strategy for Carers, HM

Government, 1999

iii Department of Health, Our health, our care, our say: a new


iv Jane Cheffings, Carers Health Survey, The Princess Royal Trust

for Carers, 2004

v Keeley and Clarke, Carers Speak Out – report on findings and


vi Department of Health, Carers (Equal Opportunities) Act, HMSO

London, 2004

Every day more and more people in the UK face the demands of caring for a

family member or friend. Caring can cause isolation and financial, emotional and

health problems. We exist to help unpaid carers of all ages by providing access

to information, advice and support services. We also campaign to bring about

change in both policy and attitudes towards carers’ issues.

Together we care

Registered charity number SCO15975

The Princess Royal Trust for CarersScotland OfficeCharles Oakley House3rd Floor125 West Regent StGlasgow G2 2SG

Tel: 0141 221 5066Fax: 0141 221 [email protected]

The Princess Royal Trust for CarersMidlands Officec/o Coventry Carers' Centre3 City ArcadeCoventryCV1 2HX

Tel: 02476 222 662

The Princess Royal Trust for CarersWales Office104 Mansel StreetSwanseaSA1 5UETel: 01792 472 908

The Princess Royal Trust for Carers 142 MinoriesLondonEC3N 1LB

Tel: 020 7480 7788Fax: 020 7481 [email protected]

The Princess Royal Trust for Carers Suite 4, Oak HouseHigh Street, ChorleyLancashire PR7 1DW

Tel: 01257 234070Fax: 01257 [email protected]

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