Carers’ Joint Strategy2009 to 2013

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Chapters

1 Executive summary 4

2 Introduction 6

2.1 Our vision to support carers in Kensington and Chelsea 6

2.2 Development of the Strategy 8

2.3 Characteristics of carers in Kensington and Chelsea 12

2.4 The role of universal services in supporting carers 15

3 Identification,recognition,respectandhavingavoice 18

4 Information and advice 22

5 Health and well-being 24

6 Employment,trainingandfinance 28

7 Time off from caring 32

8 Young carers 34

Appendices

A Policy context 38

B Local context 40

> Unpaid carers in Kensington and Chelsea

C Carers’ Joint Strategy Group Terms of Reference 50

D Consultation 52

E Investment 57

Contents

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1 Thisfiveyearstrategyispublishedasafollow-uptothe2005-08Carers’Joint Strategy. Its priorities have been developed through consultation with carersandstakeholders,betweenOctober2008andFebruary2009.Theprioritiesreflecttheimportanceofeffectivepartnerships–betweencarers,theRoyalBorough,NHSKensingtonandChelseaandotherstatutoryandvoluntary partners. The development of this Strategy has been overseen by the Carers’ Joint Strategy Group (CJSG) which has membership from key stafffromtheCouncil,NHSKensingtonandChelseaandvoluntarysectorand carer representatives.

2 The strategy will be useful for service providers and partners to understand theborough’sprioritiesforthenextfiveyearsandtohelpplanforservicedevelopments to support carers. Carers will be able to identify how the needs they expressed during consultation have been translated into future actions.Thedetailedactionplanlinkedtothisstrategywillbedeveloped,implemented and continuously monitored by the CJSG. It will be updated annuallyandprogressdiscussedattheCarers’Forum(see9below).

3 AYoungCarers’Strategy2009to13hasalsobeendeveloped,andispublishedseparately.Astheidentification,recognitionandsupporttoyoungcarers is a joint responsibility between the Council’s Adult Social Care and FamilyandChildren’sServices,keyrelevantissuesareintegratedintotheoverarching joint strategy.

4 The Strategy aims to: > raisetheprofileandstatusofcarers > ensure carers get the recognition they deserve > provide services tailored to individual needs and circumstances > enable carers of all ages to have more choice and control over decisions

that affect them.

5 TheStrategyreflectstheaimsoftheGovernment’sNationalStrategyCarers at the heart of 21st century families and communities:1

> carers will be supported to stay mentally and physically well and treated with dignity

> carers are recognised as experts and supported as partners > thefinancialdisadvantagesthatcarersoftenfacewillbereduced > carers enjoy a life outside caring > youngcarersaresupportedtoachieveacrossthefiveEvery Child

Matters2 outcome areas and are protected against detrimental caring.

1.DepartmentofHealth(2008):Carers at the heart of 21st century families and communities.

2.DFES(2004)Every Child Matters: next steps

1. Executive summary

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6 All services in the borough have a part to play in improving the quality ofcarers’lives.Wewilldevelopourfocusonhowleisureandlibraries,education,housing,transportandotherservicescansupportcarersbycreating a corporate approach to help implement this strategy.

7 Weneedtoidentifycarersasearlyaspossible,sowecanprovidetailoredsupporttothemintheircaringrole,tohelppreventacrisis.Wewilldevelopworking links with GPs so they can refer carers onto relevant services.

8 We need to extend support to more carers than we are currently in contact with.Wewillpublicisecarers’servicesmorewidely,toensurereadyaccesstoinformationaboutcarers’rightstosupportandbenefits.WewilldevelopaJointCommunicationsStrategybetweenNHSKensingtonandChelsea,theCouncil and the voluntary sector.

9 Carers want to be more involved in the development of services. We will establishaCarers’Forumtoencouragecarers’involvementinserviceplanninganddevelopment,includingthepersonalisationagenda,topromotemoreflexibleandtailoredservicestosuitindividualneeds.

10 Topromotethehealthandwell-beingofcarers,wewilloffercarersannualhealthchecks,develophealth-relatedinformationforcarers,improvehospital discharge arrangements to work more effectively in partnership with carers,andensurehealthprofessionalsarebetterinformedabouthowtosupport carers.

11 Difficultiesinbalancingworkandcaringresponsibilitiespreventmanycarersfrom enjoying a good quality life outside caring. Carers in employment need tobesupportedtosustaintheircaringrole,andcarerswhohavebeenforced to leave employment should have access to training and job-related support to re-enter the workforce. Income maximisation opportunities throughthebenefitssystemshouldbeaccessibletoallcarerswhoneedthem. We plan to coordinate these activities through existing local providers ofemploymentandtraininginitiatives,JobcentrePlus,theBenefitsServiceand the Citizens Advice Bureau.

12 We will develop and promote opportunities for time off from caring for example,throughaccesstoleisure,educationandtraining.Thesemustfitaroundtheneedsofthecarer,toensuretheyhavealifeoutsideofcaring.

13 The Young Carers’ Strategy aims to prevent young people from falling into detrimentalcaringbyimprovingtheidentificationofyoungcarersandtheassessment of their own and their family’s needs. We will raise awareness of thepracticalandemotionalneedsofyoungcarers,withallprofessionalsandpartner organisations.

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TheCarers’JointStrategy2009to2013setsoutavisiontoensureunpaidcarersare supported in their role and that their right to have a life outside caring is respected.

At the heart of this plan is a resolve to deliver a step change in our approach tocarersinlinewiththeGovernment’sNationalStrategyCarers at the heart of 21st century families and communities and the key priorities for both the Council andNHSKensingtonandChelsea.Thisincludestheintroductionofselfdirectedsupport for carers and the implementation of Every Child Matters. Within this strategy it is recognised that unpaid carers make a huge contribution to the lives of those they support in the borough.

Throughoutthisstrategywehaveusedthefollowingdefinition:

A carer is someone who spends a significant proportion of their life providing unpaid support to a relative, partner or friend who is ill, frail or disabled. This can also include caring for someone who has mental health or substance use difficulties.

This Strategy and its action plan aim to:

> raisetheprofileandstatusofcarers> ensure carers get the recognition they deserve> provide services tailored to individual needs and circumstances> enable carers of all ages to have more choice and control over decisions that

affect them.

TheStrategyhasbeendevelopedinconsultationwithcarersandreflectstheimportanceofeffectivepartnerships-betweencarers,theRoyalBorough,NHSKensington and Chelsea and other statutory and voluntary partners. A Young Carers’ Strategy has been developed in conjunction with this Carers’ Joint Strategy,andispublishedinaseparatedocument.

The Carers’ Joint Strategy Group (Appendix C) is developing the Action Plan which will complement this strategy and will monitor progress over the life of the strategy.

2.1 Our vision to support carers in Kensington and Chelsea

2.1.1 The needs of carers should not be seen in isolation from those of the people forwhomtheycare,andcarersneedsupportintheirownright.Carersshouldhave choice and control over the services they receive and the way they are

2. Introduction

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delivered. Promoting individual requirements for independence for both carers and the people they care for will result in improved lives for carers.

2.1.2 Services must be sensitive to the needs of all people within society and reflectlocaldiversity.Ourvisionrecognisesthattheprovisionofcareandsupport will be the responsibility of a wide range of agencies from both the statutory and independent sectors. Only with effective partnerships at all levels can positive outcomes for carers be delivered.

2.1.3 Carers play a critical role in preventing vulnerable adults from becoming isolated and at risk. The vision is to continue to monitor and reduce risks to and from service users and their carers in a way which enhances independence to both.

2.1.4 Wealreadyhavesomegoodqualitytailoreduniversalservices,butwealsowanttoensurethatcarersreceivethesupport,respectandrecognitiontheydeserve. We acknowledge that carers also need a healthcare service that will identify their needs and facilitate prompt access to healthcare for them and the people who rely on their support. We also intend to improve the employment opportunities of carers and to maximise their income by access tobenefits.Wewillachievethisthroughimprovedadviceandinformation,earlyidentificationandintervention,andabetterrangeofoptionsandsupport.

2.1.5 This strategy recognises that young carers have particular needs and is closely aligned with the development of Kensington and Chelsea’s firstYoungCarers’Strategy.OurvisionistoensurethatchildrenandyoungpeopleachieveacrosseachofthefiveEvery Child Matters (ECM) outcome areas and are protected against detrimental caring that limits their aspirations and potential. To do this we will:

> empower families to access support and services

> identify young carers early to prevent the effects of detrimental caring

> ensure that young carers’ needs are considered in the context of their family and not in isolation

> providesupporttoparentstoensuretheycanfulfiltheirparentingrole > deliverflexibleandpersonalisedservices.

2.1.6 Therearefiveoutcomesthatweintendtousetodeterminehoweffectivefuture actions are in improving the lives of adult and young carers. These tie inwiththeNationalCarers’Strategy(see2.2.5).

i. Carers will be supported to stay mentally and physically well and treated with dignity.

ii. Carers are recognised as experts and supported as partners.

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iii.Thefinancialdisadvantagesthatcarersoftenfacewillbereduced.

iv. Carers enjoy a life outside caring.

v. YoungcarersaresupportedtoachieveacrossthefiveECMoutcomeareas and are protected against detrimental caring.

2.2 Development of the Strategy “ Active listening and action as a result of what carers

have said will show that there is a real interest in carers.”

2.2.1 Sinceourlaststrategywaspublishedin2005,manydevelopmentshavehelpedtotargetsupportandinformation,assistcarersintheircaringroleand enable them to have a life outside caring. Our achievements include:

> increasing the numbers of carers’ assessments leading to services from three to 13 per cent

> ensuringcarers’needsareidentifiedandsupported > extending the respite break and holiday scheme to include funding for

joint carer and user breaks > updatingandcirculatingourcarers’leafletssothatcarersreceive

consistent information at the right time about services that support them > introducinganumberofnewcarerssupportservices,suchastheCarers’

Emergency Card scheme.

2.2.2 Nationalandlocaldrivers ThenationalprofileofcarershelpsgiveacontextforthelocalStrategy.

> TherearearoundsixmillioncarersintheUnitedKingdom,whichmeansthat one in eight people is a carer.

> Everyday6,000peopletakeonnewcaringresponsibilities,providingsupport,careandhelpwithdaytodaytaskstopeopletheylookafter.

> Nationally,therearethreemillioncarerswhojugglecaringandwork. > There are over one million people who care for more than one person. > ThefinancialcontributionofinformalcarershasbeenestimatedbyCarers

UK at £87 billion.

Withanageingpopulation,medicalimprovementsandincreasingnumbersdiagnosedwithdementia,caringwillbecomepartofeverydaylifeformorepeople.

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“My social worker has been very professional and caring and has always treated uswithrespect.Shehasgonetheextramileinallshe’sdonetohelpus.…Officestaffneedtorealisethattheyaredealingwithelderlypeoplewho,inmostcasesarestuckathome,andtheirwholelifeislookingaftertheirpartnerandanythingto disrupt their daily life is very stressful.” Male carer aged 80

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2.2.3 In Putting People First: a shared vision and commitment to the transformation of Adult Social Care3 the Government introduced an approach to providing support that is tailored to the needs and preferences of individuals by empowering them to shape their own lives and the services they receive. There is also a link between this self directed support and the needforimprovedadvice,advocacyandsupporttomanageapersonalbudget.

2.2.4 In Kensington and Chelsea self directed support has already been introduced for service users. This extends choice and gives individuals the option to purchase their own services outside the range of provision available through the Council. This is being extended to carers through a phased approach. A self-assessment questionnaire was introduced earlier this year which carers can use to access services such as counselling and injury prevention. Voluntarysectorpartners,(VitaliseandNewHorizons),offersupportinthis process. Either Vitalise or Social Services can carry out a full carers’ assessmentifthecarerrequeststhis.Nextstepswillincludeprovidingtailoredinformationandservicestomeetcarers’needsinallstagesofcaring,andtaking account of lessons already learnt in how to extend choice.

2.2.5 TheNationalCarers’Strategyintroducedanoutcome-basedapproachtodesigning and delivering carers’ services. It also outlined the scope of the challenges that need to be met locally to improve the overall health and well-being of carers. These are:

Outcome i: Carers are supported to stay mentally and physically well and treated with dignity

We will improve access to health and well-being services through the introductionofhealthchecks,andbyprovidingemotionalsupportandcounselling. We will show carers the same respect and dignity we would expect for ourselves or a member of our family. We will also ensure carers feelabletocomplainaboutservicesorsupport,withoutfearofretribution.

3.DepartmentofHealth(2008):Putting People First: a shared vision and comitment to the transformation of Adult Social Care.

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Outcome ii: Carers are recognised as experts and supported as partners

We will recognise the contribution that carers make in a number of ways. Wewillincreasetheopportunitiesthatcarershavetoinfluenceservicedevelopments,andmonitoringandrecruitment.WewillalsorecognisetheirexpertisethroughtheNHSExpertPatientsProgramme’sspecialistcoursesfor carers’ self-management. In addition we will ensure that information is available from a number of sources and is distributed in a targeted way throughout the borough.

Outcome iii: The financial disadvantages that carers often face will be reduced

Carerscanbedisadvantagedfinancially.Forexample,thecostofcaringisoftenhighandifcarersgiveupworktocare,theycanbedisadvantagedin a number of ways. We will aim to provide services that are accessible to working carers. We will support them to access their entitlement to benefitsandtomaximisetheirincome.Wewillensuretheyareprovidedwithhousing-related support where this is relevant.

Outcome iv: Carers enjoy a life outside caring

Carers can be isolated as a result of caring responsibilities. Creating or sustainingalifeoutsidecaringcanbechallenging,sowewillextendtheprovision of respite breaks and the opportunity for carers to have time away from caring. Carers need different types of support at different stages of caring,sowewillaimtoprovideacomprehensiverangeofsupportwhichreflectsthis.Forexample,manycarersneedhelpasthehealthofthepersonthey care for changes or they transfer between different services or specialists.

Outcome v: Young carers achieve across the five Every Child Matters outcome areas and are protected from detrimental caring that limits their potential

Youngcarerscanbefoundinallcommunitiesandoftenfindthemselvesexcluded from personal and social opportunities and education. This can inhibittheirdevelopment,ambitionsandpotentialtoachieve.Wewillbuildupon our range of existing targeted services and excellent universal services toensurethatyoungcarersareidentifiedearlyandareprotectedfromdetrimental caring. We will build service capacity to offer a personalised service that responds to the needs of the young person and the whole family. We will also provide more co-ordination and support.

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Local consultation

2.2.6 Consultation with carers has been key in developing the ambitions set out in this Strategy. A range of stakeholders were engaged through six consultation eventsheldbetweenOctober2008andFebruary2009,including95carersacross all client services. Consultation also targeted the Young Carers’ Project. Appendix D includes key messages from these events.

2.3 Characteristics of carers in Kensington and Chelsea

2.3.1 Carers remain largely hidden within the population of the Royal Borough. TheprofileofthelocalcarerpopulationisoutlinedinAppendixBandisinformedbythe2001CensusandtheJointStrategicNeedsAssessment(JSNA)2009.Thisdatasuggeststhatthereareanumberofoverlappingfactorswhichaffectthesupportrequiredbycarersandthosecaredfor,andthesewillinfluencehowsupportisdevelopedinthekeyareasoutlinedinthisStrategy.Theycanincludeage,health,ethnicity,thedegreeofcaringresponsibility,economicstatus,andthelocationofthecarerandcaredforperson and their proximity to each other.

2.3.2 In Kensington and Chelsea approximately seven per cent of the local population are carers. This is very low compared to other London boroughs thoughslightlyhigherthanHammersmithandFulham,WestminsterandWandsworth.

2.3.3 Itisestimatedthatofthe11,199peoplewhoidentifiedthemselvesascarersinthe2001Census,6,899mightbenefitfromsomesupport,becausetheyprovideanythingfrom10toover50hoursofunpaidcareperweek.However,only21percentofthesecarersareknowntoAdultSocialCare.Continued work is therefore needed to identify carers not connected to support services.

2.3.4 Taking into account factors such as ageing and the degree of mobility of thepopulation,thenumberofcarersidentifiedasnewtocaringeachyearwill continue to be greater than the number of carers who stop caring. This means that the numbers of carers will increase over time. There will always bealargenumberofcarerswhoneedinformation,adviceand,possibly,anassessment of their needs even if they do not approach the statutory sector for support.

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On a day trip during lunch, two carers agreed that to be away from their caring responsibilities was like a breath of fresh air, they didn’t have to answer to anybody, they didn’t have to listen, or organise, provide meals, or answer the phone, just relax and enjoy the time out. Both had been told “You can’t leave me, even if it is only for a few hours” but had replied “Yes I can, I look after you 24/7, today is my day off.”

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2.3.5 Forparentcarers,thetransitionfortheirchildrenfromchildren’stoadultservicesneedstobeseamless,withearlyplanningandageappropriatesupport. There are currently 52 young people known to the adult learning disabilityteamwhoareaged19to25,andanestimated106peoplewitha moderate or severe learning disability aged 18 to 24. If even half of this population do not meet eligibility criteria or are slipping through the net altogether,theconsequencemaybehighlevelsofunmetneed,whichoftenresults in people entering costly services in crisis. A more holistic approach is therefore needed to enable and support young learning disabled people into adult services.

2.3.6 The density of carers is highest in the more deprived wards in the borough suchasStCharles,GolbourneandCremorne,althoughtherearesignificantnumbers of carers in all wards. Appendix B provides a ward map showing carers known to Adult Social Care.

2.3.7 The2001Censusidentifiedjustover300childrenandyoungpeople,agedbetweenfiveand17whoprovidecare.Theproportionofyoungcarersintheunder 18 population is lower in Kensington and Chelsea than nationally. The majorityofyoungcarersprovidebetweenoneto19hoursofcareperweek,thoughthissubstantiallyincreaseswithage.TheCensusalsoidentifiedaconsiderablenumberofyoungadultcarers(over500agedbetween18and24).Thesefiguresshowthatonlyasmallproportionofyoungcarersareidentifiedandsupportedbytargetedyoungcarers’services.Thereislimitedinformationonthenumberofidentifiedyoungcarersaccessinguniversalservices.

2.3.8 Kensington and Chelsea is also unique for a number of other reasons.

> The borough has the highest population density in England and Wales which means that support services are often located close to where they are needed.

> FortypercentofthepopulationwerebornoutsidetheUK.Suchadiversepopulationwillrequirespecificworktoprovideinformation,adviceandsupport to different communities and mainstream services will need to respond to this diversity. Partnership work with community organisations will help to ensure the needs of carers in these communities are met.

> Average life expectancy rates are the highest in the country and the numbersofolderpeoplewillincreasesubstantiallyoverthenext20years,particularly those aged over 85.

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2.4 The role of universal services in supporting carers

2.4.1 We need to improve the recognition that carers are customers and consumers of all public services in the borough. The following areas show some of the ways in which carers’ quality of life is affected.

Culture, education, leisure and libraries

“ It is very hard to get any time to do any of these (leisure or education activities).”

2.4.2 Goodquality,reliableandflexiblebreaksareapositiveexperiencefortheuser and the carer. They help to balance the substantial impact that caring has on a carer by meeting their individual needs. The plan to increase the availability of breaks will ensure both respite from caring and enjoyment of life’s opportunities for more carers. Carers have told us they value different opportunities for a break including:

> short breaks to visit friends and family or participate in activities

> group breaks with organised cultural trips

> holidays both with and without the person they look after

> regular daytime activity for the cared for person

> peer group support

> lifelong learning.

2.4.3 NewHorizons’Time for Meprojectrunsaregularprogrammeofhealth,education,leisureandsocialactivitiesforpeoplewhoareaged50plus,andwho care for a family member or friend and are unpaid.

2.4.4 ThePortobelloGreenFitnessCluboffersaconcessionaryrateforcarers,supportedbyNHSKensingtonandChelsea,whichhasencouragedincreaseduse,particularlybymentalhealthcarers.TheRoyalBorough’scommitmenttoLondon’s2012Olympicswillresultinthelegacyofmorepeoplebeinginvolvedinphysicalactivitythanbefore,andcarerswillhavemoreopportunitiestoengageinphysicalactivities,andvolunteering.

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2.4.5 Librariesareoftenthefirstportofcallforcarersseekinginformation,and carers told us they want information for carers available through the borough’s libraries. Consequently we piloted an advice and information sessionattheCentralLibraryinFebruary2009wherecarersaccessedinformationonselfdirectedsupport,telecare(equipmentsuchasalarmsandsensorsfittedinthehomewhichraisethealarminanemergency),theLooking after Me course for carers (helping carers to look after their own health needs) and the Book Break project which runs at Brompton and Kensal libraries.

Housing and related support

2.4.6 Anumberofcommonthemeslinkhousing,socialcare,healthandwell-beingthroughtheprinciplesofprevention,selfdirectedsupport,supportingindependenceandjointworking.Carershavegivenusmanyexamples,including those below.

> Some registered social landlords provide assistance with access to community services. A co-ordinated approach with other providers could deliver extra support to carers for a life outside caring.

> Supporting People funded schemes such as Staying Put provide support in the home such as adaptations. Extra care housing facilitates hospital dischargeforpeoplewhoneedhigherlevelsofsupport,reducingriskand helping independence. Access to assistive technologies and to more consistent targeted carers’ information would provide further support.

> Improved co-ordination of carers’ services between health and social care,forexampleinhospitaldischargeproceduresoraspartofthehousingallocationprocess,couldhelpavoiddelayeddischargesandcrisis admissions to care homes or hospitals.

> Housing advice services and specialist client group based housing workers provideadvicetocarersandspecificsupporttoyoungpeopleintransition.

> Supporting People also funds a range of services such as the community alarmschemeandfloatingsupportservices.

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Transport

2.4.7 The Council’s Accessible Transport Services Team provides a lifeline forbothcarersandthepeopletheycarefor,enablingthemtoleadindependent lives in the community. Support includes:

> the scooter loan scheme operated by Westway Community Transport tohelppeoplewithmobilitydifficultiestoshopindependently,meetfriends and participate more fully in community activities

> informationontheTravelMentoringScheme,thataimstohelppeopleachieve independent travel on public transport where possible

> DisabledPerson’sParkingBadge,DisabledandOlderPerson’sFreedomPasses,Taxicardscheme,andpersonalisedDisabledPerson’sParking Bays (for carers of people with learning disabilities).

Environmental Health and Safer Neighbourhoods

2.4.8 The day to day needs and concerns of carers and the people they care for have also been linked to the following local initiatives:

> FoodSafetyWeektargetingtheover60swithfoodhygieneadvice

> theSaferNeighbourhoodsTeam’sColdCallingandScamAwarenesscampaigns.

What do we intend to do as a result?

2.4.9 Giventhatsupporttocarersiseverybody’sresponsibility,acorporateapproach is being developed in the Royal Borough. This will involve a range of services to support implementation of this strategy and will acknowledge carers as customers of all mainstream services.

2.4.10 Supporting People will develop its approach to support carers in a number ofways.Thiswillincludepromotingmoretargetedcarersinformation,increasingaccesstohousing-relatedservicesforcarersofolderpeople,and developing effective services and housing options for carers of young people in transition to assist their move into independent living.

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3.1.1 Clearly,carersplayavitalroleintheprovisionofcareandsupport,whichisofsubstantialfinancialbenefittothestateandsociety.Thereisareciprocalneed for society to recognise an obligation to support carers. There are a number of points which affect whether carers’ contribution is recognised:

> cultural concepts of caring are not universal and the word ‘carer’ does not exist in some communities

> parents of disabled children or people with mental health needs often see themselvesasparentsfirst

> older couples and carers of people with disabilities see caring as a natural part of their lives together

> people caring for someone as a result of substance misuse may not see themselves as eligible for carers’ services.

3.1.2 Carerswillfrequentlyfirstcomeintocontactwithhealthserviceswhenthesupport they provide for a disabled adult or family member breaks down and thereisnooptionbuttoseekhelp.Earlyidentificationofcarersisthereforeessential to ensure appropriate assessment and support is provided.

3.1.3 Respect for carers in their own right will be enhanced by the introduction of carers’ personal budgets.

3.1.4 We recognise that carers’ involvement in shaping services is central to ensuring effective solutions to their support needs.

3.2 What are we already doing? We provide information for carers at key information points in the borough

(CustomerServicesCentre,WestwayInformationCentre,libraries,hospitalsandGPsurgeries),throughstaffcarryingoutcarerassessments,andvoluntary sector organisations working with carers.

3.2.1 We publicise carers’ information and services at outreach events in the community(Carers’Week,Carers’RightsDay,theOlderPeople’sHealthFair),andrunpublicitycampaignsaroundthesedates.Wehaveconsistentlyidentifiedhiddencarersthroughthisactivity.

3.2.2 The Deputy Mayor holds an annual event in recognition of the role carers play locally.

3.2.3 The Carers’ Joint Strategy Group includes three places for carers and two voluntarysectorrepresentatives,(currentlyVitaliseandtheKensingtonandChelsea Mental Health Carers’ Association).

3.2.4 We have undertaken an outcomes survey of carers in receipt of social care support. An annual consultation event is held with mental health carers to review support services over the previous year.

3. Identification, recognition, respect and having a voice

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3.3 What have carers told us they need? Carerswanttoberecognisedandvaluedfortheunpaidworktheydo,

treated as partners in care and involved in decisions about the services for the person they care for. They want information on support to carers to bewidelyaccessibleintheborough,tobeinvolvedinthedevelopmentofservices,andtoknowthatanyconcernstheyvoicehavebeenheardandacted upon.

3.3.1 Young carers have told us they value the more specialised help which young carers’projectsandothertargetedservicesprovide.However,manyfeelthatGPs,hospitalsandschoolsdonotalwaysrecogniseortakeaccountof their needs as children and as young carers. They have also told us that they do not want to be singled out as different from other young people but want clear information and professionals that are sensitive to their needs.

3.4 What do we intend to do as a result? > Publicise carers’ services more widely to ensure that all carers have ready

accesstoinformationabouttheirrightstosupportandbenefitswhereverthey live in the borough.

> WorkwithGPsasearlycontactpoints,tobemoreinvolvedinidentifyingcarers and referring them on.

> Deliver a training programme to staff working directly with young carers and parents and to staff in Adult Social Care to raise awareness and promotetheidentificationofcarers.

> Use voluntary organisations more as a gateway to carers’ services. > DevelopaCarers’Forumtoencouragemorecarerstogetinvolvedin

activitiessuchasserviceplanninganddevelopment,recruitmentandworking groups.

> Roll out carers’ personal budgets so that carers have more choice and control in deciding which services can best meet their needs.

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“IhadnoideawhattodowhenIfirstbecameinvolvedinthewelfareofmyelderly uncle. I just thought that there must be a Social Services department in his home area that could advise me! That chance call has opened a support system to me that has been so helpful I cannot believe! All staff that I have met withhaveintroducedthemselvesprofessionally,giventheirjobtitleandfullnameand contact number. All have been caring and very approachable. I have been given guidance but allowed freedom to make my own decisions. Daily carer arrangementshaverelievedenormousstress.Allserviceshavehelpedtofillthevoids that I had in the care of my uncle. Thank you so much for a very helpful support system.” Female carer aged 50

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4.1.1 Carersneedtohaveaccesstorelevant,up-to-date,andaccessibleinformation and advice. The strategy of many boroughs is to have a carers’ centre functioning as a one-stop shop for access to the full range of supportonoffertocarers,andthisapproachwasdiscussedduringrecentconsultation events (see 5.3).

4.2 What are we already doing? Inthelastyear,wehaveensuredthatthemaininformationpointsinthe

borough and voluntary organisations working with carers have up-to-date informationonservicesforcarers.Increasingly,healthvenuesandGPpractices also display this information.

4.2.1 Awareness raising amongst both staff and the community has taken place through campaign work such as that during Carers’ Week and Carers’ RightsDay,aswellastheOlderPeople’sHealthFair.

4.3 What have carers told us they need? A carers’ centre is not seen as the solution to the gaps in information

and support services. Carers we consulted do not want an investment in buildings and additional staff costs. They appreciate the support already providedbyorganisationssuchasFullofLife,NewHorizons,VitaliseandActionDisabilityKensingtonandChelsea,andbytheMentalHealthsupportstaff.

4.3.1 Theshapeoftheboroughisfelttobeahindrancetofindingagenuinely“central”location,andmanycarersareunabletoleavethehouseforlongperiods. It is also felt that different groups of carers have different needs and onecentremaynotbeabletoaccommodatethis.Furthermore,carersmaychoose not to attend a carers’ centre in their non-caring time preferring to focusontheirownindividual,ratherthantheircaringrole.

4.3.2 Insteadofacarers’centre,carerswant:

> a newsletter written clearly and distributed widely

> a helpline

> signposting through the health and social care system by well informed and trained staff

4. Information and advice

“ Social workers/GPs must be made to help identify carers,notignorethembecauseoftheirworkload."

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ation and ad

vice

> use of GP surgeries for information

> use of libraries as central information points

> timelyinformation,forexampleathospitaldischarge,afteracourseoftreatment,orduringtransition

> health-related information as well as information on available services.

4.3.3 Young carers told us they do not identify themselves as ‘carers’ but it is just ‘something they do’. Information and guidance targeted at young carers needs to be sensitive and empower them and their families to seek support if they need it. Some disabled parents told us they were apprehensive in askingforhelpfromFamilyandChildren’sServicesforfearthattheirchildwould be ‘taken away’. Information needs to de-stigmatise the support and services available for families.

4.4 What do we intend to do as a result? > DevelopaJointCommunicationsStrategybetweenNHSKensington

andChelsea,theCouncilandvoluntarysectorpartnerstoincludethefeasibilityofahelpline,workwithGPsandotherhealthcarestaff,andlibraries.

> WorkcloselywiththeFamilyInformationServicetoensurethatyoungcarers’ and families’ information needs are met.

> Increase access to online information through inclusion in the Royal Borough’srevisedA-Zdirectory,andupdatestotheCouncil’scarers’webpage.

> Provide a range of health-related information for carers.

> Publish and distribute a regular newsletter. A pilot issue of News for CarerswasproducedjointlybytheRoyalBoroughandNHSKensingtonandChelseainFebruary2009.

> Make sure that the key contact points in the borough can signpost effectively wherever carers present for help.

> Identify more Carers Champions within the statutory and voluntary sectors.

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5.1.1 We recognise that carers make a vital contribution to the health and well-being of thousands of cared for people in the borough. We also know that carerssignificantlyreducethestressonhealthandsocialcaresystems.

5.1.2 Whencarersaresupportedinanappropriateandtimelyway,healthproblemsbroughtaboutbytheircaringrolecanbealleviated,andthelevelsof stress that create ill-health can be reduced.

5.1.3 This Strategy endorses an outcomes-based approach in relation to carers’ health and well-being. This is achieved by ensuring carers are mentally and physicallywell,treatedwithdignity,andrecognisedasexpertcarepartners.Effective engagement with carers will enable us to identify their health and well-being priorities as well as offer them appropriate training. Support services also need to reach out to and become more accessible to Black and minority ethnic carers.

5.1.4 Welltrainedandsupportedstaffcontributesignificantlytoacaringhealthand social care system.

5.1.5 Supporttocarerstomaintainemployment,enablesthemtobalancecaringwith a life of their own.

5.2 What are we already doing?5.2.1 Adult Social Care funds the Carers’ Emergency Card Scheme which aims to

give reassurance and back-up support in case a carer is unable to provide theusualsupportduetoanemergency.Currently160carersareregisteredon the scheme.

AdultSocialCarealsofundsWPFtoprovidecounsellingsessionsforcarersto help make caring more manageable.

5. Health and well-being

Case study: WPF Therapy

Ruth came to counselling exhausted from caring for two chronically ill parents. Her condition was compounded by a hoarding habit, financial difficulties and an acute lack of confidence resulting from a divorce.

She had become over-accommodating to everyone in her world: her father, her ex-husband and her daughters, yet no one respected her. This became the focus of her counselling sessions. The relationship with her oppressive father improved. She stopped hoarding and felt more confident. She said “a seed had been planted inside” her as a result of counselling. She also began to realise that she was a good carer.

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ealth and w

ell-being

5.2.2NHSKensingtonandChelseacurrentlycommissionsanumberofsupportservices.TheseincludetheWayfinderprojectwhichprovidesadviceandinformationforolderpeopleincludingoldercarers,theTime for Me project runbyNewHorizons,andVitalisewhichprovidesdayandnightrespitecarefor carers.

5.2.3 TheExpertPatientsProgrammeforcarers,Looking after Me, provides a rangeofself-supporttechniquesincludingrelaxation,dealingwithtiredness,coping with feelings of depression and communicating needs to relatives.

5.2.4 Adedicatedinjurypreventionserviceforcarers,accessedthroughtheCommunityRehabilitationTeam,helpstoensuretheyknowhowtolookafter themselves and reduce the risk of accidents to themselves and the people they care for.

5.2.5PortobelloGreenFitnessCentresupportsadultandyoungcarerswithfreegymaccessandspecificallytailoredsessionsforyoungcarers.Thisservicealso has a pathway and signposting element so that carers can be given information about other support services.

Case study: Injury Prevention Service

Pat was caring for her mother, who had dementia, and needed help to get up out of a chair and get into the bath. Pat also supported her mother when walking around their flat, including a short flight of stairs, and short distances outdoors. She began to experience upper back ache from physically helping her mother.

The Injury Prevention Service, alongside occupational therapists, looked at Pat’s daily tasks. Pat’s mother was given a higher chair to make standing up easier and equipment to help with bathing and getting in and out of bed. Pat was taught how to help her mother, while using good posture herself and how to physically support her mother when using the stairs.

The service provided a training session tailored to Pat’s needs. She learnt about how to prevent back injuries, and practised techniques to help her to move and support her mother in a way that was safe for both of them. She also received physiotherapy treatment for the stiffness and aching in her back and some exercises to do at home.

Pat was delighted with the support from the Injury Prevention Service.

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5.3 What have carers told us they need? During consultation we have been asked to consider:

> developing health and voluntary sector venues for carers to access support

> annual health checks for carers

> joined up Health and Social Care services facilitating a carers’ assessment with the carers’ annual health check

> specifictrainingforcarersinthemedicalconditionofthepersontheycarefor

> improved access to manual handling training

> improved pathways to preventative services so that carers remain well andavoidill-health,forexampleflujabsandaccesstorestandrelaxation

> ensuring healthcare professionals are better informed about how to support carers.

5.4 What do we intend to do as a result? > DevelopaJointCommunicationsStrategybetweenNHSKensingtonand

Chelsea,theCouncilandthevoluntarysector.

> Jointly publish a carers’ information pack.

> Provide and disseminate better health-related information for carers.

> Establish a system for referring carers for an assessment of their combined health and social care needs.

> MapallofthecommunityhealthserviceswithinNHSKensingtonandChelsea as they relate to carers.

> Develop partnerships between carers and the hospital discharge teams regardingtreatmentanddischargeplanning,forexampleinendoflifecare of the cared for person.

> Promote carers’ registers and carers’ champions in all GP practices.

> Offer carers annual health checks.

> Provide young carers with health-related support.

> Identify opportunities to support carers in improving situations affecting theirhealth,forexamplesmokingcessationandphysicalexercise.

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6.1.1 Employers have a key role to play in recognising the valuable contribution that carers can make to the workplace and the economy. By supporting carers,employerscanretaintheirexperiencedstaff,reducerecruitmentandtraining costs and increase the loyalty of those employees who are carers. Carers in return can maintain their current and future income and also have a life outside caring.

6.1.2 The quality and sustainability of replacement care can make the difference between a carer having to give up work or remain in employment. Working carersneedtobeabletodrawonarangeofresourcestobeconfidentwhen at work. Examples include encouraging people to make informed choicestomanagetheircareneeds,supportingandenablingindividualstoaccessinformationonthis,developingskillsinself-careandtheuseoftechnology.

6.1.3 Telecare provides carers with peace of mind and a degree of freedom based on the knowledge that the people being cared for still have support in place iftheyarenotthere.Similarlyifalternativecareprovidersareskilled,reliableandgoodcommunicators,thenagaincarersareeffectivelysupported.

6.1.4 Thefinancialpositionofmanycarersisrelativelypoorcomparedtotherestof the adult population. Paid employment and the social environment this offerscanproviderespiteandemotionalsupportformanycarers.However,difficultiesinbalancingworkandcaringresponsibilitiescanincreasestressto intolerable levels and often results in carers having no choice but to drop out of the workforce. This is made worse by the fact that many unpaid carersareunawareofthebenefitsandsupportthattheymaybeeligiblefor.

6.1.5 Regardingemployment,thechallengeisto:

> support carers into training and work

> encourageemployerstoadoptflexiblepolicies

> raiseawarenessof,andaccessto,theavailablebenefitsandsupporttounpaid carers.

6.1.6 Thereasonsyoungpeopletakeoncaringresponsibilities,andthelevelofcareprovided,canbeinfluencedbyarangeoffamilycircumstances.Lowfamilyincome,andlackofadultemploymentinfamilies,canresultinthe whole family being vulnerable to poverty and social exclusion. Often

6. Employment, training and finance

“ Service providers have to be willing to put services inplacetoallowcarerstocontinuework,forcarersto have a real choice about working or caring.”

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ent,trainingandfinance

disabilitybenefitsdonottakeintoaccounttheadditionalcostofparentingwhich can further exacerbate family poverty. Ensuring young carers are not excludedfromeducation,trainingoremploymentopportunitiesisofvitalimportance to their future development and potential.

6.2 What are we already doing? A number of partners are responsible for providing employment and training

initiatives in the Royal Borough.

> OpenAgerunsanEmploymentProgrammeNewFutures50Pluswhichsupportspeopleover50intowork,andhasworkedwithcarerswhowantedflexibleorpart-timehoursinordertocontinuetocare.

Case study: Royal Borough support to employees

The Royal Borough offers support services to carers who work for the Council. Currently 165 carers are registered.

“When I registered with Personnel, I was offered a support plan meeting with my line manager, advice and information. I have access to a dedicated careline, 24 hours a day, seven days a week and a secure carers’ website. I’m also able to take up to 15 hours paid leave a year (extra to my annual leave entitlement) to help me carry out my caring responsibilities. Registering as a carer helped me realise just how much I’ve been dealing with on my own.”

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> Jobcentre Plus is a Government agency supplying people of working age(18to59)fromwelfareintowork,andhelpingemployerstofilltheirvacancies.

> The Royal Borough is a Local Employment Partner sharing vacancies with Jobcentre Plus and working with local colleges to help prepare potential employees for interviews.

> The Royal Borough’s Human Resources service offers restart training and accesstoring-fencedvacanciesforthoseaged50plus.

> NOVAhelpsRoyalBoroughresidentsgobacktowork.TheAdultAdvancement Career project helps those in work or out of work to develop their careers.

> The Council organises Carers’ Week and Carers’ Rights Day advice and information drop-in sessions borough-wide in partnership with Kensington andChelseaCitizensAdviceBureauandtheBenefitsService.

> The Council funds Kensington and Chelsea Citizens Advice Bureau toofferfinancialhealthchecksandabenefitstake-upservicetoolderpeople and carers of older people.

Case study: Admiral Nursing Service, CAB

Joe was referred to the Citizens Advice Bureau (CAB) Income Maximisation Service by the Admiral Nursing Service, which cares for people with dementia. Admiral Nurses had been supporting Joe to care for his mother, diagnosed with dementia, while he recovered from a liver transplant.

CAB helped Joe to claim Carers’ Allowance, Disability Living Allowance and to apply for a grant for a washing machine. During conversations, it became apparent that Joe was also caring for his father, who had mobility problems. Joe persuaded his father to agree to a home visit from CAB. While completing a form for Attendance Allowance, it became apparent that Joe’s father spent most of his days and nights in the downstairs kitchen as his bedroom was up two flights of stairs and the banister on one side was broken. With CAB’s help, Joe’s father was awarded a higher rate of Attendance Allowance. The family was also put in touch with the Council’s occupational therapy department who provided them with aids and equipment, including a stair rail.

Claiming the benefits they are entitled to and receiving practical support at home has boosted not only the family’s income but their morale. This has taken pressure away from Joe, who is now making a stable recovery.

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6.3 What have carers told us they need? > Improve quality and access to information and support services to help

them into employment and to access education and training. > Trainingfor40to59yearoldstopreparethemtobecomecarersandfor

the challenges that they may face. > Training offered to employers on how to support carers in their

employment. > Reliable and responsive service provision so carers can take up

employment. > Financialhealthchecksandbenefitsadvicesothattheycanclaimthe

benefitstheyareentitledto. > An exploration of opportunities where the experience of older people and

ex-carers can be valued. > A raised awareness amongst school staff about the challenges and issues

relating to young carers so that young people feel secure and able to seek support.

6.4 What do we intend to do as a result? > Plan a workshop with representatives of those engaged in the current

employment initiatives. This will identify ways in which a focus on carers’ trainingandemploymentneedscouldbeachieved,andpromotethesenew opportunities.

> Identify ways to support local employers wishing to support carers at work.

> Identify ways to support and train local residents who are employees withintheborough,inpreparingthemforafuturecaringrole.

> Continue to organise advice and information drop-in sessions.

> Continue to fund Kensington and Chelsea Citizens Advice Bureau to offer abenefitstake-upservice.

> Promoteflexiblecarer-friendlystaffpolicieswithcontractors.

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7.1.1 Respite care is highly valued by carers and without it many would not be abletocontinuecaring.Tohavealifeoutsidecaring,carersneedtohaveaccesstoleisure,educationandtrainingopportunities.However,manycarers are not aware of the existing respite support available.

7.2 What are we already doing?7.2.1 Breaksmaybeforafewhoursatatimeforexampleforshopping,ortotake

part in a social activity. Holidays can also provide a break from caring. We currently provide

> a home-based sitting service in the cared for person’s home

> a night sitting and overnight services

> respite in day centres or a care home

> residential courses such as Reiki

> residentialrespitebreaksandholidaybreaks.Specificservicesincludeaservice for carers of substance users which is a therapeutic educational programme and the short break service for people with learning disabilities.

7.2.2Weofferflexibleannualgrantsforcarerstakingabreakawayfromthepersontheycarefor,orforthecarerandthepersontheylookaftertogoaway together every two years.

7.2.3 Residential respite services are used where community options are not available or suitable for people with high support needs. The preference for mostpeopleistostayintheirownhomeinfamiliarsurroundings,toavoidthe confusion and disruption that going into residential care can create.

7.2.4 The current short breaks provision for people with learning disabilities is being reviewed to identify how it can better meet service users’ and carers’ needs.

7.2.5 FamilyandChildren’sServicescommissionsFamilyActiontorunaYoungCarers’ Project for young people. This includes running a weekly support group and organising a three day residential young carers’ festival in the school holidays. Activities at the weekly support group have included makingaDVDfilm,t-shirtmaking,boxercise,bowling,andvisitsout.

7. Time off from caring

“Breaksareimportantbecausetheyrefreshyou,even getting lunch breaks every day helps.”

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ime off from

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7.3 What have carers told us they need? > Respite grants that take account of carers with children.

> Confidenceandtrustintherespitecareonoffer.

> Breaks with or without the person they care for.

> Knowing in advance how much money they are allocated each year in order to plan ahead.

> Morecarers’supportgroupstobenefitfrompeersupportandhelpsustain the caring role.

> Opportunities available at short notice.

> A longer loan period from the libraries.

> The choice to have a joint personal budget to join up money from the users’ and carers’ respective allocations.

7.4 What do we intend to do as a result? > Promotetelecareservicestogivecarersmoreflexibilityandmobilityto

suittheirneedsandlifestyles,andminimiserisktothosebeingcaredfor.

> Offermoreflexibilityforcarerstotakebreaksincludingthroughselfdirected support or personal budgets.

> Give carers more choice in planning their breaks in advance.

> Promote all available services through the Royal Borough’s website and informationleaflets.

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8.1.1Youngcarerscanbefoundinallcommunities,andareoftenexcludedfrompersonalandsocialopportunities,includingtheireducation.Thiscaninhibittheirdevelopment,ambitionsandpotentialtoachieveacrossthefiveEvery Child Matters outcomes.

8.1.2 Each young carer is unique and their needs will differ depending on the individual,thepersontheyprovidecarefor,andtheirfamilycircumstances.Ouraimtherefore,assetoutintheborough’sfirstYoungCarers’Strategy,is to empower families to seek support and to deliver personalised services that are responsive to the needs of the whole family.

8.1.3 The Young Carers’ Strategy sets out in more detail how we will bring about improvements in the way services work together to identify young carers and improve their outcomes.

8.2 What are we already doing? Provision to support young carers is good but we know we can do better.

Wehaveagoodrangeofexistingtargetedservices,forexampletheYoungCarers’Project,andexcellentuniversalservices.Ouraimwillbetobuildupon these services to deliver better outcomes for young carers.

> FamilyandChildren’sServices(FCS)commissionsFamilyActiontoprovide a targeted service for young carers. The Young Carers’ Project provides: home-based assessments for young carers where appropriate; a weekly support group; emotional one to one support; ongoing homework support; and facilitates a steering group with professionals which includes young carers.

> FCScommissionsasupportpackageforparentsofdisabledchildren,andthedisabledchild,toenableparentstoprioritisetheneedsoftheirotherchildren.Fundinghasbeenusedtopurchaseplacesatweekendandsummer play schemes and one to one support for parents in the home.

8. Young carers

“ I want to live my life; to go out and breathe the fresh air and spread my wings.”

“ I shouldn't have to choose betwen my family and my life.”

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> FCShasanidentifiedleadforyoungcarers,atHeadofServicelevel,whochampions support for young carers and is leading the development and implementation of the Young Carers’ Strategy.

> Adult and Children’s services work well together in identifying young carers andreferringthemappropriately.Thisisreflectedinthenumberofreferralsmade to the Young Carers’ Project.

> We have a range of high quality play and youth service facilities available to all children and young people.

8.3 What have young carers told us they need? > The top priority for young carers was consistently better support for the family

and the person they care for. They told us this would make most difference to their lives.

> To be treated the same as other young people.

> Reassurance about how they will be treated if they let their school and teachers know about their situation at home.

> The opportunity to take a break from caring and mix with other young people. Young carers spoke very highly of the Young Carers’ Project. They valued the range of social and support activities provided.

> ProfessionalssuchasGPsandteachers,whorecogniseandtakeaccountoftheirneedsaschildrenandyoungcarers,tolistentothem,andbesensitive to their needs.

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8.4 What do we intend to do as a result? > We want to provide ongoing support to young people with caring

roles to ensure they enjoy life and achieve their potential. We will do this by ensuring universal services have the knowledge and capacity to support young carers and that a comprehensive range of targeted support is available. This will include identifying appropriate support for the youngest carers and consulting with young adult carers on the developmentofsupporttomeettheirneeds,includingtheirtransitiontoappropriate adult carer services.

> Prevent and protect young people from falling into detrimental caring byimprovingtheidentificationofyoungcarersandtheassessmentoftheir own and their family’s needs. This will include developing shared protocols between services that clarify roles and responsibilities for identifying and assessing young carers.

> Utilise the strength of families in order to reduce the number of young people that have to take on substantial caring roles. We will do this by offering family directed packages of support and promoting emotional support.

> Raise awareness and understanding of the challenges and issues facing young carers among professionals and partner organisations. We will do this by designing and delivering a rolling programme of training for professionals who work directly with children and families.

> Raise awareness of the role of young carers and the practical and emotional support available to them among young people and families. We will do this by developing a coordinated approach to the dissemination of information and guidance available for children and families.

Carers’ Information Sessions

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The Carers (Recognition and Services) Act 1995ThisActgavecarers,ofallages,importantnewrightsandaclearlegalstatus.Those who provide or intend to provide a substantial amount of care on a regular basis are entitled to request an assessment of their ability to care and to continue caring.

Local authorities must take into account the results of the assessment when making decisions about the type and level of care services to be provided to the person receiving care.

The Carers and Disabled Children Act 2000This Act applies to carers over 16. It:

> gave local councils mandatory duties to support carers by providing services to carers directly

> gave carers the right to an assessment independent of the person they care for

> empowered local authorities to make direct payments to carers

> enabledcouncilstosupportflexibilityinprovisionofshortbreaksthroughtheshort break voucher scheme.

Carers (Equal Opportunities) Act 2004This Act made three main changes to the existing law around carers’ services. It:

> placedadutyoncouncilstoinformcarers,incertaincircumstances,oftheirright to an assessment of their needs

> providedthatwhenassessingacarer’sneeds,councilsmusttakeintoaccountwhetherthecarerworksorwishestowork,undertakesorwishestoundertakeeducation,trainingorleisureactivities

> facilitated co-operation between authorities when providing services relevant to carers.

Carers at the heart of 21st century families and communities 2008> This national strategy set a framework for developing support for carers as a

processofchangeovertenyears.Itsfiveobjectivesaresetoutinsection2.2.5,page10.

Appendix A: Policy context

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: Policy context

Mental Capacity Act – Deprivation of Liberty Safeguards – April 2009Thisappliestopeopleinacarehomeorhospital,whereapersonneedstobedeprived of their liberty in their own best interests to protect them from harm.

The safeguards include the right to challenge decisions and for a representative to act for them and protect their interests.

Living well with dementia: a National Dementia Strategy – February 2009ThefirsteverNationalDementiaStrategysetoutinitiativesdesignedtoincreaseawarenessofdementia,ensureearlydiagnosisandinterventionandimprovethelivesofpeoplewithdementia,theircarersandfamilies.Proposalsincludetheintroduction of a dementia specialist into every general hospital and care home.

Stroke Strategy – December 2007The key aims of this strategy are:

> to reduce the number of strokes experienced each year

> to ensure that we provide effective acute and follow up care when strokes happen.

Strokespecificrehabilitationgearedtoeachindividual’spractical,psychologicaland emotional support needs for the stroke survivor and also their carers whose lives are also transformed by the illness.

Every Child Matters (ECM) The Government's Every Child Matters: Next Steps and the Children Act 2004 identifiedthefiveuniversaloutcometargetsmostimportanttochildrenandyoungpeople,whatevertheirbackgroundorcircumstances:Beinghealthy,stayingsafe,enjoyandachieving,makingapositivecontribution,andachievingeconomicwell-being.

Young carers and their families are a vulnerable group for whom delivering the outcomes of ECM requires a planned and coordinated approach. Local authorities also have an obligation to protect and safeguard against children and young people taking on caring that has a detrimental effect on their outcomes.

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Unpaid carers in Kensington and Chelsea (source:2001CensusandJointStrategicNeedsAssessment2009)

1. Estimated number of carers needing support

1.1 Accordingtothe2001Census,KensingtonandChelseahad11,199carersor9,400householdswithatleastonecarer.Thisrepresents7.1percentofthe local population. The number of carers providing different levels of care hours per week was as follows:

A B C D

Total carers 0-19hours 20–49hours 50+hours B & C plus half A

11,199 8,599 1,100 1,500 6,899

Table 1

(ColumnDassumesthatallcarersprovidingover20hoursofsupportperweekandhalfofthoseprovidinglessthan20hoursperweekwouldbenefitfrom additional support.)

1.2 The table below shows the number of carers known to Adult Social Care in 2007–08,andofthesehowmanyweregivenanassessmentandsupportinsome way. These are shown as a percentage of those carers estimated to beinneed,asexplainedin1.1above.

Known carers Carers assessed

Carers given services

Information and advice only

2007-08 1409 1250 918 167

Local carers "inneed"

6899 6899 6899 6899

% carers known

20% 18% 13% 2%

Table 2

Oneinfiveunpaidcarers“inneed”isknowntoAdultSocialCare,and13per cent of these were given services to meet their own needs as carers. ThisrepresentsasignificantimprovementoverthelifeofthepreviousJoint

Appendix B: Local context

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CarersStrategy2005-2008.In2004-05,only16percentoflocalcarers“inneed”wereknowntoAdultSocialCare,andonlythreepercentofthesewere given services.

1.3 OfthecarerscurrentlyknowntoAdultSocialCare,somerefuseassessments and/or services and some pay for their own care.

1.4 An indication of why the cared for person needs to be looked after is given by the service group known to Adult Social Care.

Carers known to Adult Social Care 2007-08 (including those not assessed for support)

User service group Carers aged 18-64 % (rounded up)

Older people 895 64%

Mental health 249 18%

Physical disability 205 15%

Learning disability 59 4%

Substance misuse 0 0%

Vulnerable person 1 0%

Total 1409 100%

Table 3

2. Comparison with other areas

2.1 TheboroughisrankedfifthlowestinbothLondonandEnglandfortheproportion of the population who are carers. Kensington and Chelsea has thelowestproportionofresidentsproviding50ormorehoursofunpaidcareofanyboroughinEnglandandthesecondlowestfor20to49hours.

2.2 Londonhasalowerproportionofunpaidcarers’provisionthanEngland,withouterLondonboroughsexperiencinghigherratesthaninnerLondon,probably due in part to the younger age structure of the inner London population.Afteradjustingforitsagestructure,KensingtonandChelseastillhas very low rates of provision of unpaid care.

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Provision of unpaid care in Kensington and Chelsea against London and England

Unpaid care hours per week

Total 0-19 20-49 50+

% % % %

Kensington and Chelsea 7.0 5.4 0.7 1.0

London 8.5 5.8 1.0 1.7

England 9.9 6.8 1.1 2.0

Table 4

2.3 Comparedtoitsneighbourshowever,KensingtonandChelseahashigherratesofunpaidcareprovisionthantheboroughsofWandsworth,HammersmithandFulhamandWestminster,andlowerthanBrent.

2.4 Familymembersandothercarersmayliveoutsidetheboroughbutstillprovidecaretothoselivingwithintheborough,althoughthisisnotrecordedin the Census. Those carers who have to travel into the borough may be inhibited by factors such as parking restrictions and the congestion charge.

3. Provision at ward level

3.1 The density of carers is generally highest in the more deprived wards in the borough. Only St Charles and Cremorne have a higher than average density ofcarersrelativetothegeographicalarea,incomparisontotherestofLondon.

3.2 Inparticular,levelsofcareinStCharlesfor20to49and50+hoursaweekarewithinthehighest20percentofallwardsinLondon.NottingBarnsfallsintothesecondquintile.WiththeexceptionofGolborneandCremorne,allotherwardsfallintothelowest20percentinLondon.

3.3 Ascanbeseenbythemaponpage43,warddatahighlightsnostronggeographical trends. Pockets with high proportions of carers occurred within all wards (with the highest proportion of care in St Charles ward occurring around the Princess Louise Hospital and Carmelite Monastery and school). The number of unpaid care hours is indicated by the shading and the locationsofexistinghealthandsocialcareofficesandservices.

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3.4 The Royal Borough of Kensington and Chelsea has prioritised the north of the boroughinboththeCommunityStrategyandtheLocalAreaAgreement,astheyhavethehighestlevelsofsocialdeprivation,andthereforehigherneedforsupport. The map below shows where the highest densities of unpaid carers live which also coincides with the areas of highest population density.

Figure 1

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4. Carer turnover

4.1 Everyday6,000peopleintheUKtakeonnewcaringresponsibilities,providingsupport,careandhelpwithday-to-daytasks.Thissuggeststhatthere will continue to be a large number of people new to caring who will needadvice,informationonsourcesofhelpand,possibly,anassessmentoftheir needs as carers and support to meet these needs.

5. Age and gender

5.1 Over70percentofcaringisstilldonebywomenbutninepercentofmennow have caring responsibilities compared with 11 per cent of women.

5.2 5.9percentofmenand8.2percentofwomenprovideunpaidcareinKensington and Chelsea. Provision by women is higher than men in the middle age bands and peaks for both sexes for the middle age band of 45 to 54 year olds.

5.3 Carers in middle age may be under additional pressure because they have family responsibilities and may be working or wish to work. Carers are more likely than non-carers to work part-time and be self-employed. They are thereforemorelikelytofacefinancialdifficultiesandbeinneedofbenefitsadvice.

Figure 2

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5.4 Assumingallthoseprovidingabove20hoursperweekandhalfthoseprovidinglessthan20hoursperweekwouldbenefitfromsupport,thissuggeststhereareanestimated1,090oldercarerswhowouldbenefitfroma carers’ assessment.

5.6 The table below summarises the number of older carers known and assisted byAdultSocialCarein2007-08.

Carers age Estimated local carers "inneed"

Known carers

Carers assessed

Carers given services

Information and advice only

65-74 700 240 216 145 174

% of local carers"inneed"

64% 34% 31% 21% 25%

75+ 390 152 133 113 10

% of local carers"inneed"

36% 39% 34% 29% 3%

Table 5

5.7 The percentage of older carers known and helped by Adult Social Care is higherthanforcarersofallages(seeSection1above).Nevertheless,onlyabout one third of the local carers estimated to be in need are receiving supportascarers.Somemaybeinreceiptofservicesintheirownright,andsome will be helped by the provision of services for the person they care for.

5.8 Some older carers will be looking after adult children with disabilities or mental health problems. The carer and the person cared for may need help in renegotiating their roles so the cared for person can develop more independenceandmaythemselves,intime,becomethecarer.Oldercarersmay be anxious about what will happen when they die or are no longer able to care.

Young carers

5.9 Youngcarersarelargelyhiddenandthereforeitisdifficulttoknowhowmanyyoungpeoplewithcaringresponsibilitiesthereare,bothnationallyandwithin Kensington and Chelsea. Although many services in Kensington and Chelseaidentifyandmonitoryoungcarers,the2001Censusprovidesthemost extensive range of data.

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> The2001Censusidentified303carersundertheageof18.Thisrepresents1.12percentoftheunder18population,whichiswellbelowthe national average of 1.6 per cent.

> Themajorityofyoungcarersprovidecareforbetweenoneto19hoursper week (83.2 per cent).

> The percentage of young people that provide care increases with age. The number of hours of care provided also increases with age.

> A total of 532 young people aged between 18 and 24 provide care. This represents four per cent of the 18 to 24 aged population.

> Femalesaremorelikelytoprovidecarethanmales,overallandinallageranges.

> Thelargestproportionofyoungcarersagedbetweenfiveand19isintheCremorneward.Thelargestproportionofyoungcarersaged20to24isin the St Charles ward.

6. Ethnicity and religion of carers 6.1 Kensington and Chelsea is known to have a very culturally diverse

population,withover100differentlanguagesspoken.Thetablebelowindicatesthat65percentoflocalcarersclassifiedthemselvesasWhiteBritishorIrish.Asignificantproportionofthegroupclassifiedas“WhiteOther”arelikelytobepeoplewhosefirstlanguageisnotEnglish.Itisknown,forexample,thatthereisalargeSpanishspeakingcommunity.

6.2 InKensingtonandChelsea,ahigherproportionofpeoplefromPakistaniand Bangladeshi groups are likely to provide unpaid care compared to othergroups,althoughthesepopulationsaresmall.SixoutoftenpeopleprovidingunpaidcareareWhiteBritish,byfarthelargestgroupofcarers.TwentypercentofcarersarefromaBlackandminorityethnicgroup,similarto the general borough population.

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6.3 Table showing proportion of unpaid care by ethnicity

All residents Providing unpaid care Proportion of all carers in K&C

Number Number % %

White British 79,594 6,789 8.5% 61%

White Irish 5,183 467 9.0% 4%

White Other 40,146 1,720 4.3% 15%

Black African 6,012 407 6.8% 4%

Black Caribbean 4,103 280 6.8% 3%

Other Asian 2,160 181 8.4% 2%

Indian 3,224 248 7.7% 2%

Pakistani 1,206 125 10.4% 1%

Bangladeshi 1,148 110 9.6% 1%

Chinese 2,592 70 2.7% 1%

Mixed 6,500 386 5.9% 3%

Other Ethnic Group 6,084 363 6.0% 3%

Black Other 966 53 5.5% 0%

TOTAL 158,918 11,199 7.0% 100%

Table 6

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6.4 The table below is another indicator of the cultural diversity of the borough. Those of Christian faith are slightly less likely to provide unpaid care than otherfaithgroups,yetformtwothirdsofallcarersintheborough.Thenextmost common faith group is Muslim.

Table showing proportion of unpaid care by religion

All residents Providing unpaid care % of all carers in K&C

Number Number % %

Christian 98,466 7,179 7.3% 64%

Muslim 13,365 991 7.4% 9%

Jewish 3,552 284 8.0% 3%

Other Religion 3,081 249 8.1% 2%

Hindu 1,598 124 7.8% 1%

Noreligion/notstated

38,869 2,385 6.1% 21%

TOTAL 158,931 11,212 7.1% 100%

Table 7

6.5 Mainstream services must be able to respond to the diversity of the local population and work in partnership with community organisations to ensure Black and other minority ethnic groups know of the assistance they are entitledtoandareencouragedtoapplyforthis.Thefiguressuggestthat,withtheexceptionoftheWhitecommunityand,possibly,theMuslimcommunity,thereisnota“criticalmass”ofpotentialuserssufficienttosustain a “dedicated service”.

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7. Carers and health 7.1 Overall,thoseprovidingunpaidcarehavepoorerhealththanthosenot

providingit.However,thisispartlybecausecarersaremostcommonintheolderagebands,whereillnessisalsomoreprevalent.Afteraccountingforage,poorerhealthisexperiencedbycarersuntiltheir50s;fromthisageonwards,theirhealthstatusissimilartonon-carers.

7.2 Just under a quarter (24 per cent) of households in Kensington and Chelsea are home to at least one person with a limiting long-term illness. Within thesehouseholds,oneinfive(21percent)haveatleastonecarerlivinginthe household (in most cases it is just one person). It is assumed that the other households either have no unpaid carer or the carer is non-resident.

7.3 AlthoughtheCensusdoesnotindicatethecausesofill-health,itispossibleto speculate that the stresses associated with caring could be a contributing factor for some people. Poor health could put the caring relationship at risk. This would suggest the importance of preventing ill-health and promoting good healthamongcarers,andtheimportantroleprimarycarestaffcouldplayinidentifyingcarerswhowouldbenefitfromacarers’assessmentandsupport.

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Terms of referencePurpose of the group

I. The Carers’ Joint Strategy Group (CJSG) is a multi-agency group established to promote the interests of carers. It will use the legislation on carers and the powers and responsibilities of its membership to lead on implementingandinfluencingimprovementsinservicestomeettheneedsofcarers,andtheirhealthandwell-being.Itwillhaveacommissioningfunctionby contributing to the prioritisation of resources.

II. TheCJSGwillreporttotheHealthandWell-beingPartnershipBoard,ofwhich it will be a subgroup. The CJSG will enable references on issues of concerntocarerstobemadethroughrelevantCouncilandNHSKensingtonand Chelsea structures including other partnerships.

Terms of reference

1. Toberesponsibleforthedevelopment,implementation,monitoringandreview of the multi-agency Carers’ Strategy.

2. To ensure that the Strategy is developed in consultation with a wide and diversegroupofcarers,andotherrelevantpartners.

3. To ensure the effective development and delivery of carers’ services.

4. To promote effective joint working between statutory and voluntary agencies andinfluencethewayinwhichmainstreamservicesaredeliveredinresponse to the needs of carers.

5. ToinfluencetheCommunityStrategyandensurethattheneedsandinterestsofcarersarereflectedinthisandotherkeystrategicdocuments.

6. To ensure that carers are involved in all major developments in service deliveryinKensingtonandChelsea,whichwillhaveanimpactupontheneeds and interests of carers and the people for whom they care.

7. To ensure that the implications of requirements arising from relevant statutoryguidanceareconsidered,andreferencemadetorelevantgroupswhere appropriate.

8. To receive progress reports and presentations as appropriate on developmentsaffectingcarersfromCouncilservicegroups,NHSKensington and Chelsea and other relevant health bodies and external agencies.

Appendix C: Kensington and Chelsea Carers’ Joint Strategy Group

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9. To ensure effective links are maintained with other partnerships and stakeholder boards.

10. Every six months to monitor the resource allocation to carers.

11. Toreviewbi-annuallythepartnership’sworkingarrangements,financialplanning and its performance to evaluate if it is successful in achieving its objectives.

12. Where applicable upon termination or expiry of these terms of reference the partners will co-operate in good faith in order to dissolve the partnership with as little adverse impact on residents and service users as reasonably possible.

Membership > Health representatives with knowledge of/operational responsibility for

carers’services(NHSKensingtonandChelsea,StMary’sHospitalTrust,CentralandNorthWestLondon(CNWL)NHSFoundationTrust,Chelseaand Westminster Trust).

> Local authority representatives with knowledge of/operational responsibility for carers’ services (primarily from Adult Social Care and FamilyandChildren’sServices,butpossiblyfromotherservicegroups).

> Practice-based Commissioning Group.

> Carers’ representatives.

> Voluntary sector representatives.

> Carers’ Champions working at a senior level.

> The CJSG has the power to set up task groups to help to carry out its responsibilities.

Chairing

> The Chair will be elected annually.

Frequency of meetings

> The Carers’ Joint Strategy Group will meet quarterly.

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BetweenOctober2008andFebruary2009weheldfiveconsultationeventswithcarers,plusastakeholdereventinNovember2008.Thespecificclientgroupconsultations were run in partnership with local voluntary organisations working with carers. These focused on two of the key local and national priorities for improvingsupportforcarers,theprovisionofinformationandadvice,andrespitebreakprovisiontosupportalifeoutsidecaring.Atotalof95carersacrossalladultclientservicesweredirectlyinvolvedintheseevents.Inaddition,weconsultedwiththe Young Carers’ Project.

1. Information and adviceThere was general consensus on some areas of what was needed:

> Newsletter.

> Helpline.

> Access to information by direct mailing.

> Access to information by email.

> Timely information.

> Regular carers’ forum.

> Advice / information in libraries/leisure centres/social centres/day centres/GPs/Town Hall.

> Agencies should share clients’/carers’ basic information to save repeating. Coordination is needed within services and between agencies.

> Carers need to know where to go when things go wrong - making comments or complaints about services.

> Informationismorehelpfulwhenthereissomeonetonavigate/signpostyou,forexampleVitalise,ActionDisabilityKensingtonandChelsea,FullofLife,NewHorizons,districtnurse,socialworker,AdmiralNurse.

> Continuityofsupportisimportant–carersneedtobekeptupdatedaboutstaffchanges/responsibilities.

Thefollowingarethekeyspecificinformationandadviceissuesraisedbydifferentcarer groups:

Carers of older people> Information and publicity on pension credit.

> Carers Directory of services.

> Tapintotheambulanceservicemore,asit’sagoodservice.

> Carers support groups covering all client groups.

> Co-ordination for carers from voluntary sector such as Sixty Plus/Age Concern/Help the Aged.

Appendix D: Consultation

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> Volunteers who are well trained and supported.> Adequatefinancehealthchecks.> Improve the hospital discharge process - for example rights to services and

support - carers need a list of organisations that can help. Staff are too keen to discharge you so there’s not enough time to discuss your information needs.

Carers of learning disabled people > Timescales,socarersknowwhentheyaregoingtogetaservice.> Direct mail point for carers to use.> Informationandadviceaboutaccessinghealthservices–specialistand

general,includingcomplexhealthneedsanddisability.> Use of schools to disseminate information for example in pupils’ school bags.> Staff need to know when carers need certain information especially when

people reach certain ages/stages. Information needs to be targeted for example at transition. Help for transition needs to be real and tailored.

Carers of people with physical disabilities > Moreclarityneededoninformationaboutpersonalbudgets–howitwillaffect

people on a day to day basis.> Dissemination of information in the community through local groups.> More information addressing the carer rather than the cared for person.

> Leafletswritteninclear,non-technicallanguage.

Carers of people with mental health needs> Meetingsintheeveningandatweekends,withinformationsentoutwellin

advance to allow working carers to book time off.> Expansion of the existing drop-in service in the north and south of the borough

–toincludeoutofhoursserviceforworkingcarers.> Keycarers’contactpersonavailableonallhospitalwards,fornewcarers.> Advice available to carers who have other family members to look after (such

as newborn babies) as well as the cared for person.

2. Respite breaks provisionThefollowingarethekeyissuesraisedbyspecificcarergroups:

Carers of older people> Importantbecausetheyrefreshyou,evengettinglunchbreakseveryday.> Needbreaksfordaysout/fewhourssupporttoseefriends/goshopping/

theatre/gardens/cinema.

> Needtoknowwhoisgoingtotakeoverfromyou.

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> Needstobeasympatheticattitudetocarerswhowanttojoinactivitiesatshortnotice.

> There is a big difference between the respite needs of carers who live with the cared-for person 24 hours a day and other carers.

Carers of learning disabled people

FutureoptionsforshortbreakswerethesubjectofaseparateconsultationinDecember08/January09.Theresultingactionplanincludescarers’issues.

Carers of people with physical disabilities

> Currentschemeleavescareroutofpocket,moneygivenfortriplessthanthecarethatispaidfor–doesnotmakefinancialsense.

> Sense from organisations that they rely on carers and are at a loss if they go on leave.

> Issueswithtrustandagencystaff–informalnetworkoftenreliedupon.

> Organisations providing the services need to view carers as separate from the people they care for.

> Uncertainties often leave carers reluctant to take the plunge and book a holiday withsufficientwarning.

Carers of people with mental health needs

> Carers’ lives would be easier if they knew how much money they have to spendperyear–theycouldplanbreaksinadvance.

> Therespitelimitshouldberaisedto£500peryearwhichismorerealistic.

> Carers’ money should be for carers only.

> Respiteserviceswherecarersandcaredforcangotogether,needtobepublicised.

> Going away as a group of carers with or without the cared for person would be a good idea.

> Many carers cannot leave home for long periods.

> Needemergencyrespiteforcarers.

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Themes and priorities identified at the stakeholder event 1. Identifying carers

> Publicisecarers’servicesmorewidelytoensurethateveryoneidentifiedasacarerhasreadyaccesstoinformationabouttheirrightstosupportandbenefitswherever they live in the borough.

> Agreeandapplyaconsistentdefinitionofacareracrossrelevantstatutoryandvoluntary sector partners to make it easier for carers to identify themselves and get the support they need.

> WorkwithGPs,asearlycontactpoints,tobemoreinvolvedinidentifyingcarers and referring them onto support services and monitor progress.

> Use voluntary organisations more as a gateway to carer services and agree how the numbers and nature of contacts with carers will be gathered and used.

> Encouragemorecarerstogetinvolvedinserviceplanninganddevelopment,through better communication.

2. Finance and employment

> Improve the quality and access of information and support services to help carersenter,resumeormaintainemployment.

> Offertrainingfor40to59yearoldsinpreparingtobecomecarersinthechallengesthattheyfaceforexample,earlyintervention,backcare,emotionalsupport,understandinghowtoaccesstimelyinformationandsupportservices.

> Workwithanumberofidentifiedemployerstoensurecarersintheiremployment are appropriately supported and consider using existing carer expertise to deliver this.

> Collaborate with commissioners and service providers to ensure reliable and responsive services are available so that carers can take up and maintain employment.

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3. Health> Develop ways of working across health and social care which improve

communication,referralpathwaysandtheavailabilityofsharedinformationinorder to improve support services for carers.

> Develop good practice training for healthcare professionals on how to access carer support services that maximise independence and choice.

> Develop joint working protocols across health and social care which ensure improved levels of carer satisfaction.

> Develop preventative measures such as regular health checks for carers and making the criteria for accessing help and support simpler and more effective at reducing carer admissions to hospital.

> Develop ways of ensuring that care packages put in place are holistically assessed from both health and social care perspectives.

4. Young carers> Provide ongoing support to young people with caring roles to ensure they

enjoy life and achieve their potential.

> Prevent and protect young people from falling into inappropriate caring by improvingtheidentificationofyoungcarersandtheassessmentoftheirownand their family’s needs.

> Utilise the strength of families to reduce the number of young people that have to take on substantial caring roles.

> Raise awareness and understanding of the challenges and issues facing young carers among professionals and partner organisations.

> Raise awareness of the role of young carers and the practical and emotional support available to them.

5. Personalisation> Carers Quality Panel to assist in ensuring the effective development of plans to

introduce carers’ personal budgets.

> Ensure there is a mix of self directed support and direct provision available to carers and that they have the right to decline personal budgets once they have all the necessary information.

> Develop good quality information on what carer support is available.

> Providesupportandtrainingforstaff,andforcarerswhowillbeaccessingpersonal budgets.

> Provide robust brokerage services that are accessible to everyone who needs them.

> Improvethefrequencyoffinancialchecksinthepersonalbudgetsystem.

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Spend on specific services for carers in 2008/09

Carers' Grant allocations £s

Carers’ Grant allocated to Adult Social Care 519,000

Carers’GrantallocatedtoFamilyandChildren'sServices 131,720

Total allocation 650,720

Additional Carers' funding sources Carers’ Emergency Grant 96,800

LearningDisabilitiesDevelopmentFund(Carerselement) 35,000

NHSKensingtonandChelsea-Voluntarysectorcontracts 67,067

NHSKensingtonandChelsea-Continuingcare(respite) 36,000

Grand total 885,587

TherewasatotalCarers'GrantallocatedtotheRoyalBoroughof£992,000in2008/09.

Aboveindicateswhereitwasspecificallyallocatedandtheremainderfundedbasebudgets.

Appendix E: Investment

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Telephone: 020 7361 3013 Email: socialservices@rbkc.gov.uk

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