ADULTS SERVICES KNOWLEDGE REVIEW 13. Outcomes-focused services for older people

Transcription

1 ADULTS SERVICES KNOWLEDGE REVIEW 13 Outomes-foused servies for older people

2 ADULTS SERVICES KNOWLEDGE REVIEW 13 Outomes-foused servies for older people Caroline Glendinning, Sue Clarke, Phillipa Hare, Inna Kothetkova, Jane Maddison and Liz Newbronner i

3 ADULTS SERVICES First published in Great Britain in Deember 2006 by the Soial Care Institute for Exellene University of York 2006 All rights reserved Written by Caroline Glendinning, Sue Clarke, Phillipa Hare, Inna Kothetkova, Jane Maddison and Liz Newbronner ISBN ISBN Produed by The Poliy Press Fourth Floor, Beaon House Queen s Road Bristol BS8 1QU tel fax tpp-info@bristol.a.uk This report is available in print and online Soial Care Institute for Exellene Goldings House 2 Hay s Lane London SE1 2HB tel fax textphone ii

4 CONTENTS Exeutive summary v 1 Researh review Introdution to researh review Definitions: what are outomes? What outomes do older people value? Change outomes Maintenane or prevention outomes Proess outomes Outomes and diversity Views of the User Advisory Group Organisational arrangements impeding 9 outomes-foused servies Introdution Assessment Reviews Purhasing of are pakages Provider-level barriers Role of ommissioners Importane of ommuniation Impat of the health soial are divide Barriers and diversity Views of the User Advisory Group Organisational arrangements failitating 18 outomes-foused servies Introdution Assessment Reviews Miro-level ommissioning of are 21 pakages Provider-level fators Importane of ommuniation Overoming the health soial are divide Initiatives and diversity Views of the User Advisory Group Conlusions of researh review 24 iii

5 ADULTS SERVICES 2 Pratie survey Introdution to pratie survey Postal survey Aims Methods Respondent harateristis Nature and range of outomes work Ahievements and fators helping and 33 hindering ahievements Postal survey: disussion Case studies Introdution Outomes-foused ativities Outomes-foused servies Monitoring and evaluation Impat of outomes-foused servies: 50 the experienes of servie users Fators failitating outomes approahes What hinders outomes approahes? Plans for (further) outomes-foused 59 servie developments 3 Conlusions 63 Referenes 67 Appendix 1: User involvement in the knowledge 75 review Appendix 2: Methods used in the knowledge review 83 Appendix 3: Summary of ase study sites: servies 93 and ativities Appendix 4: Data olletion and projet douments 99 Appendix 5: Information about SPRU and 127 Aton Shapiro Index 129 iv

6 Exeutive summary Introdution to researh review This knowledge review inludes: a review of researh evidene on the outomes valued by older people and the fators that failitate and inhibit ahieving these outomes a postal survey of loalities and soial servies managers in England and Wales known to be interested in developing outomes-foused approahes to older people s servies; and in-depth studies in six loalities. This was supplemented by information supplied by members of the Outomes Network (originally established by SPRU and now supported by the DH Change Agent Team s Better Commissioning Learning and Information Network). The knowledge review was supported by a user advisory group of six older servie users who met three times during the projet. Definitions Outomes refer to the impats or end results of servies on a person s life. Outomes-foused servies therefore aim to ahieve the aspirations, goals and priorities identified by servie users in ontrast to servies whose ontent and/or forms of delivery are standardised or are determined solely by those who deliver them. Outomes are by definition individualised, as they depend on the priorities and aspirations of individual people. Researh into the outomes valued by older people Three groups of soial are servie outomes have been identified; these are very similar to the fators that older people identify as entral to their independene and well-being: v

7 ADULTS SERVICES Outomes involving hange Improvements in physial symptoms and behaviour. Improvements in physial funtioning and mobility. Improvements in morale. Outomes involving maintenane or prevention Meeting basi physial needs. Ensuring personal safety and seurity. Having a lean and tidy home environment. Keeping alert and ative. Having soial ontat and ompany, inluding opportunities to ontribute as well as reeive help. Having ontrol over daily routines. Servie proess outomes These refer to the ways that servies are aessed and delivered and inlude: Feeling valued and respeted. Being treated as an individual. Having a say and ontrol over servies. Value for money. A good fit with other soures of support. Compatibility with, and respet for, ultural and religious preferenes. The limited researh evidene indiates that older people from ethni minority ommunities and with different types of impairments value the same broad range of outomes. However the priority assigned to different outomes may vary aording to age, living irumstanes and type of impairment. vi

8 Exeutive summary Researh into fators failitating and inhibiting outomes-foused servies for older people Researh shows that a number of fators relating to the operation of soial are quasi-markets may affet the delivery of outomes-foused servies. Assessment, are planning and review Servie-led assessments that do not offer hoie. Assessments that emphasise dependeny or overlook psyhologial and emotional needs. Assessments that do not hallenge low expetations of servies or the limited range of help older people think it legitimate to request. Fragmented or irregular reviews of servie users. The health and soial are divide, where this prevents holisti assessment and are planning. Miro-level purhasing How are managers purhase servies from providers of home are servies has a major impat on the delivery of outomes-foused servies. Purhasing speified periods of time or help with speified tasks an restrit both the flexibility and personalisation of servies; purhasing just enough time (or tasks) to maintain physial well-being an threaten hange and proess outomes, as well as maintenane outomes relating to soial partiipation. Provider-level barriers Diffiulty reruiting and retaining staff redues the flexibility of providers to provide individualised servies, even where older people are willing to purhase (extra) servies privately. Levels of funding from soial servies purhasers an restrit providers opportunities to offer fair working onditions and training and thus attrat and retain good quality staff. vii

9 ADULTS SERVICES Commissioning and ontrating Commissioning and ontrating arrangements exert major influenes over the delivery of outomes-foused servies, partiularly by independent setor (rather than in-house) providers. Contrats allowing providers to vary the prie they harge purhasers offer inentives to respond to individual priorities and needs. Within quasi-markets, ommuniation is vital to outomes-foused servies. This inludes ommuniation between: are managers, ontrats managers and providers, so that ontrats reflet users needs and preferenes. providers and are managers, about hanges in users priorities and irumstanes. users, front-line staff, provider managers and purhasers, so that hanges in needs are quikly identified and any servie hanges implemented. In addition, front-line staff in regular ontat with older people need to be well-equipped with up-to-date information about other servies outside their immediate area of expertise. Researh evidene on initiatives promoting outomesfoused servies Researhed development projets onduted by the Soial Poliy Researh Unit, University of York have tested with soial servies partners ways of introduing outomes-foused approahes into routine soial are pratie. Using appropriately designed doumentation to shape front-line pratie, the following approahes have been suessfully implemented: Identifying and summarising older people s desired outomes during assessment. Briefing home are staff on older people s desired outomes. Identifying outomes for arers during assessments and reviews. Using postal questionnaires to ollet information on outomes. viii

10 Exeutive summary In addition, diret payments have been shown to enable older people to ahieve desired outomes. However, this suess appears to depend on the availability of loal support (formal or informal) to manage diret payments; take-up among older people remains low. Pratie survey I: Postal survey A postal survey aimed to establish the range and extensiveness of outomes-foused developments in older people s soial are servies aross England and Wales. Following areful sreening of existing ontats, at least 70 suh initiatives were identified. Soial servies were generally the sole or lead ageny; the most ommon partners were NHS primary are trusts and private servie providers. Signifiantly, most initiatives were desribed as urrently being planned, piloted or rolled out ; only 17 per ent had been established for up to three years and only 13 per ent for three-plus years. Outomes-foused initiatives were most likely to involve servies for older people living at home and/or following hospital disharge. Initiatives inluded developing outomes approahes in assessment, are planning and review; hanging existing servies and ommissioning new ones; and monitoring to see how far servies meet user outomes. Only moderate levels of user involvement in planning these initiatives were reported. Beause so many of the reported initiatives were still at an early stage, some respondents thought it was too early to judge whether they were suessful; those who were able to generally judged them to be partly or fully suessful. However, given the onstraints of a postal survey, it was not possible to know what suess riteria were being used or how far these judgements refleted the experienes of older people using outomes-foused servies. Respondents also identified a number of fators that helped and hindered progress in developing outomes-foused approahes, and ited measures to overome these barriers. These fators were explored in in-depth ase studies. ix

11 ADULTS SERVICES Pratie survey II: In-depth ase studies Six loalities where outomes-foused approahes were well established were seleted from responses to the postal survey. They overed a range of ativities (assessment, are planning and review, ommissioning and ontrating for new and existing servies); and servies (day are, intermediate are, prevention servies, ommunity-based rehabilitation, home are and residential are). Additional examples were obtained from members of the former SPRU Outomes network. Outomes-foused ativities Assessment, are planning and review Sites that had developed outomes-foused approahes had found them diffiult to integrate with the Single Assessment Proess. However a number of ways had been found to inorporate outomes into are planning; these ould also form the basis of reviews. Commissioning for hange outomes Loalities had reently established intermediate are servies jointly with NHS partners; some had also restrutured their in-house home are servies to provide short-term reablement servies to all new users, free of harge. Desired outomes (for example, being able to manage housework or walk to the shops) were identified during assessments. Care and rehabilitation staff had onsiderable autonomy over how they worked with older people to ahieve these outomes. Rebuilding onfidene and morale was onsidered as important as and underpinned improvements in physial funtioning. Commissioning for maintenane outomes Three sites had amended ontrats with independent home are providers to failitate more flexible, outomes-foused servies. Changes inluded: establishing zones for eah provider, thus reduing staff travel time x

12 Exeutive summary agreeing in advane estimated workloads and payments, with providers billing retrospetively for atual time spent building spare time into ontrats for providers to use flexibly to meet additional requests from users, free of harge. These hanges were expeted to provide flexibility for unexpeted emergenies; guarantee staff minimum weekly hours; allow staff to be employed on a shift basis; and offer opportunities for staff training. Only one suh hange in ontrating had been evaluated: higher levels of user satisfation and inreased job satisfation by front-line staff were reported; only eight per ent of are pakages exeeded their estimated budget. These hanges involve transferring power and responsibility from purhasers to providers and users. They require high levels of trust, open ommuniation hannels and appropriate performane and finanial management systems. Two sites had reently ommissioned low level preventive servies from Age Conern and other voluntary organisations these inluded shopping, home visiting and soial ativities. Outomes-foused servies Intermediate are and reablement servies These were areas where staff thought they had made most progress in establishing outomes-foused servies. Servies offered a holisti approah, tailored to meeting individual goals; progress towards these ould be easily monitored. Users onfirmed these outomes. Day are Users valued outomes-foused day servies that identified their interests and linked them to staff with similar interests. Ethni minority users valued day servies employing staff who spoke their languages. Residential are A loal quality development sheme for nursing and residential homes enouraged individualised servie user plans and plaed heavy emphasis on maximising hoie, ontrol and independene that ontributed to maintenane and proess outomes. xi

13 ADULTS SERVICES Monitoring and evaluation Systemati and routine monitoring, often using linial tools, was ommon in reablement and intermediate are servies. There was less evidene of routine outome monitoring among users of longer-term home are servies. Fators failitating outomes-foused approahes These inluded: national poliies suh as the National Servie Framework for older people and the Green Paper on adult soial are loal vision, leadership and investment in hange management, inluding staff indution and regular training workshops partnerships and whole-systems working; these helped seure aess to resoures and skills that were essential to user outomes but loated outside the remit of soial are new investments in intermediate are servies involving user-led are outomes. Establishing new servies also enabled outomes-foused ulture and pratie to be established from the start bidding for Partnerships for Older People Projets that would allow investment in preventive servies to meet desired maintenane outomes Fators hindering outomes-foused approahes These inluded: Single Assessment Proess other national poliies, inspetion regimes and performane indiators resoure onstraints staff ulture and attitudes at all levels user and arer attitudes. xii

14 Exeutive summary Older people s perspetives Older people interviewed in the pratie survey onfirmed the very signifiant benefits of intermediate are and reablement servies aimed at ahieving hange outomes. Users of these servies affirmed how they had been enouraged to identify important goals and helped to ahieve these. They reported signifiant improvements in onfidene and morale as well as physial funtioning. These improvements were attributed to the fat that these servies were delivered in ways that maximised users hoie and ontrol. Older people using residential and day are servies also onfirmed the proess outomes of highly individualised are. However, it was diffiult to find examples of holisti approahes in whih servies met a wide range of desired maintenane outomes. The User Advisory Group onfirmed the importane of servies responding to individual needs and differenes; of hoie and ontrol over servies; and of help with low level tasks suh as leaning, gardening and shopping. The Group highlighted the diffiulties experiened by some older people, partiularly from ethni minority ommunities, in aessing servies without additional support. Voluntary organisations and NHS servies, partiularly GPs, were thought to have important roles to play in helping older people aess servies and ahieve desired outomes. Voluntary organisations an also provide information and advoay for older people who are isolated or find it hard to aess servies. Conlusions Although reent poliies have emphasised outomes-foused servies, in some loalities suh approahes have been in operation for some time. SPRU s Outomes programme, with its assoiated training and development material, enabled some loalities to make signifiant developments, partiularly in outomes-foused approahes to assessment, are planning and review. More reently, targeted funding and performane indiators related to hospital admission and disharge have given a signifiant impetus to the development of servies foused on hange outomes, both in ollaboration with NHS partners and by loal authority in-house servies. xiii

15 ADULTS SERVICES However, in general, there remains a signifiant disjuntion between these developments and the apaity of independent home are servies to deliver long-term maintenane and proess outomes. Some loalities are building on the onlusions of extensive researh into are management and ommissioning within soial are quasi-markets and are developing less rigid and bureaurati approahes to ommissioning and purhasing servies, partiularly from independent home are providers. The impat of these new approahes on users experienes needs thorough and systemati evaluation. Resoure onstraints and poor relationships with independent providers in other areas ontinue to impede the introdution of more flexible, individualised home are servies. The emergent poliy emphasis on prevention means that efforts are being made to develop low-level preventive servies, often through partnerships with loal voluntary and ommunity organisations. These may ontribute to valued maintenane outomes suh as domesti help and soial partiipation. The Partnerships for Older People Projets will provide valuable evidene in the future about the effetiveness of these approahes to meeting desired outomes. Three broader issues remain. First, although this knowledge review found many examples of high quality, outome-oriented servies, these were often fragmented and servie-speifi. For example, the outomes fous of reablement servies was often not arried through into longterm home are servies. Similarly, good quality day servies addressed maintenane and proess outomes, but there was little support for maintaining these outomes outside the day entre. Seondly, the onept and pratie of outomes is subjet to multiple interpretations and disiplinary perspetives. Some servies had a strong outomes fous as a onsequene of other poliies, suh as the development of intermediate are and reablement servies, or new approahes to the inspetion of residential are. The onept and pratie of outomes mapped most readily onto intermediate are and reablement servies. However, even here, GPs and liniians were reported sometimes not to understand the onept of outomes, with onsequenes for the appropriateness of their referrals and advie to older patients. Moreover, many intermediate are servies sreen potential users arefully and admit only those able to ahieve hange outomes. This risks equating outomes with hange outomes. Longer-term maintenane xiv

16 Exeutive summary and prevention outomes, and groups of older people suh as those with dementia for whom maintenane, prevention and proess outomes are espeially important, onsequently risk being marginalised. Flexible, person-entred or responsive may be more appropriate and inlusive terms than outome. Third, as the user advisory group onfirmed, many of the outomes desired by older people do not, on the fae of it, appear to be derived from interventions that urrently fall within the remit of soial are servies. Partnerships with other statutory and voluntary agenies will be neessary to support older people, for example, in keeping alert and ative, ontinuing to partiipate in soial networks and other maintenane and preventive outomes. A whole systems approah to the ommissioning, review and evaluation of outomes-foused servies is therefore essential. xv

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18 1 Researh review 1.1 Introdution to researh review The Soial Care Institute for Exellene (SCIE) ommissioned the Soial Poliy Researh Unit (SPRU) at the University of York to undertake a knowledge review on outomes-foused servies for older people. The knowledge review onsists of: a review of researh on outomes and outomes-foused servies a national survey and ase study examples of urrent and emerging approahes to ommissioning and delivering outomes-foused servies for older people aross England and Wales. A User Advisory Group was established to guide the knowledge review (see Appendix 1). The researh review aims to: summarise researh on the outomes that older people value and wish to ahieve from ontat with soial are servies identify fators that failitate or inhibit outomes-foused servies. Details of how the researh review was onduted are ontained in Appendix 2. Researh inluded in the review was mainly onduted before a number of important measures, likely to have impated on poliy and pratie, were implemented. Thus the impat of partnership working as promoted by Setion 31 of the Health At 1999, the National Servie Framework (NSF) for older people, the Single Assessment Proess (SAP), Fair Aess to Care Servies (FACS) guidane and measures to promote the take-up of diret payments by older people may serve to modify some of the onlusions of the review. However, evidene of their effets in promoting outomes-foused servies is not yet available. 1

19 ADULTS SERVICES 1.2 Definitions: what are outomes? For the purposes of this review, outomes refer to the impats or end results of servies on a person s life. Outomes-foused servies are therefore those that aim to ahieve the goals, aspirations or priorities of individual servie users. They an be ontrasted with servies whose ontent and/or form of delivery are standardised, regardless of the irumstanes of users; and with servies whose goals, ontent and mode of delivery are primarily determined by those who ommission or deliver them rather than those who use them. The onept of outomes is losely related to that of quality of life. There is a high degree of onsisteny between different studies in the outomes that are valued by older people; these also relate losely to fators that older people have identified as ontributing to quality of life. Reently the term personalisation has begun to be used. 1 Personalisation inludes the tailoring of servies to fit individual aspirations and priorities; and the ative partiipation of servie users in the proesses of designing and delivering servies: by putting users at the heart of servies, enabling them to beome partiipants in the design and delivery, servies will be more effetive by mobilising millions of people as o-produers of the publi goods they value 1, pp This approah is also refleted in proposals ontained in the adult soial are Green Paper 2 and the government-wide strategy on ageing. 3 Researh into experienes of personalising servies, as defined above, is as yet very limited; an evidene base is urgently needed. 2 However, as will be shown below, the importane of having a say in how servies are delivered is an important proess outome for older people, so muh of the researh reviewed in the first part of this report will also be relevant to the development of personalised servies. Another losely related onept is that of independene. 4 6 Again, onsiderable overlaps exist between ommonly desired or valued outomes and the dimensions of independene identified by older people. Indeed, it would be perverse if soial are servies did not ontribute to outomes that are onsistent with the dimensions of independene as defined by older people. Moreover, older people who antiipate servie outomes that are inompatible with their onepts of independene are likely to rejet servies and try to find other ways of meeting their needs. 7 2

20 Researh review This review aimed to identify researh on the outomes that older people aspire to ahieve from soial are servies. However, many of these outomes do not, on the fae of it, appear to be diretly related to the bulk of urrent soial are servies for older people home are, day are and residential are. Indeed, researh shows how older people have broad, holisti perspetives on desired outomes and may expet soial are servies to ontribute to ahieving these. 8 This holisti perspetive is ongruent with the Green Paper on adult soial are 2 and therefore with the shift in pratie that will be required to implement the Green Paper proposals. If health and soial are pratitioners find it diffiult to separate need from need for a speifi servie, 9, 10 then desired outomes that fall beyond the urrent limits of soial are servie provision risk remaining unmet. 1.3 What outomes do older people value? Qureshi et al 11 identified three lusters of soial are outomes valued by older people: hange outomes; maintenane or prevention outomes; and proess outomes relating to the ways that servies are delivered Change outomes Change outomes relate to improvements in physial, mental or emotional funtioning that are ahieved through servie interventions. Qureshi et al 11 found that older people value the following: hanges in symptoms and behaviour; for example, older people with mental illness may wish to feel less anxious or depressed, to relate better to family members and to be more ative and interested in life improvements in physial funtioning, whether through improvements in individual mobility or through the provision of equipment and adaptations improving onfidene and morale; older people antiipated feeling happier if they reeived servies that met their needs and addressed their problems. 3

21 ADULTS SERVICES Maintenane or prevention outomes The majority of the outomes valued by older people relate to maintenane or preventing deterioration in their health, wellbeing or quality of life. Meeting basi physial needs: being lean and presentable in appearane having appropriate food and drink at appropriate times being physially omfortable Ensuring personal safety and seurity: Minimising fear of rime and threats to personal safety. Personal safety is partiularly important for older people with dementia and an also be important in deisions to enter residential are. Feeling safe inludes reeiving servies from people who an be vouhed for 11, and trusted. Living in a lean and tidy environment: An untidy house or garden is a threat to self-esteem as it an indiate that an older person is less able to manage her/his own affairs. A lean and omfortable home an help to sustain soial inlusion, as older people are more likely to feel onfident having visitors if the home is lean, tidy and ontinues to reflet their soial identity However, it an be diffiult to get soial are support in this area and even when servies are available, they may not be ulturally appropriate 15, 16, p 11. One group of minority ethni older people opted for diret payments in order to obtain ulturally appropriate home are servies. 18 Keeping alert and ative: This inludes preventing boredom and having ativities that sustain ompetene, identity and independene. Losing a sense of purpose an be damaging to mental health. Remaining ative also helps to 11, 17, sustain soial interation. 4

22 Researh review Keeping alert and ative is partiularly important to older people in residential settings; the range of ativities available inluding opportunities to pursue individual hobbies, undertake tasks related to the running of the home, exursions and outings is an important dimension of the quality of homes as rated by older people 13, 23, 24, quoted in 25, p 13. Opportunities to go out and ativities that result in a sense of ahievement are also important for older people with dementia. 23 Aess to soial ontat and ompany: Close relationships and soial networks are entral to wellbeing in later life. For isolated older people, soial ontats with home are staff are 17, 19, 22, 26, 27 partiularly valued. Avoiding dependene on others is widely valued; onsequently the benefits of soial ontat are enhaned if relationships are haraterised by reiproity. Aepting pratial help and/or emotional support an be easier if there are opportunities to 17, 21, 28, 29, 30 reiproate quoted in 25. Soial ontat is important for older people with dementia as it an 14, 17, 23 promote a sense of ontinuing soial integration. Good quality soial relationships friendships with other residents and friendly staff attitudes are important outomes for older people 13, 31 in residential settings. Having ontrol over everyday life: This underpins all other outomes relating to maintenane and prevention. Being looked after involves a loss of ontrol and therefore of independene; older people therefore want servies that support them in looking after themselves. Having ontrol over everyday life does not neessarily mean doing everything for oneself, but being 5, 11, 12, 15, 17, 27, 29 able to deide how and when things are done. Older people with dementia also value autonomy and ontrol, inluding ontrol over delegating some responsibilities to another person 11, 14, 23 who they trust. 5

23 ADULTS SERVICES Choie and ontrol over daily living ativities are important outomes 13, 31, 32 for are home residents Proess outomes Proess outomes refer to users experienes of seeking, obtaining and using servies. Proess outomes are so important that they an undermine the impat of other outomes that might otherwise improve quality of life. Barriers to proess outomes inlude lak of information; diffiulties gaining aess to servies; delays in reeiving servies; ineffiient or disrespetful staff; lak of onsultation; and onsultation that is not ated on. 11, 12, 16 The quality of relationships with staff and the personal attributes of the latter are ruial to positive outomes and are valued 13, 16 equally by older people in their own homes and in residential are. Proess outomes inlude: Feeling valued and respeted, despite ultural differenes or ommuniation diffiulties; respet for privay and onfidentiality; and being treated as having a legitimate right to servies. Feeling valued and respeted is partiularly important for older people with mental 12, 14, 33, 34 health problems or dementia. Being treated as an individual. Interpersonal aspets of servie exhanges an assume great importane; older people want to feel at ease with soial are staff and value willingness, responsiveness, heerfulness, friendliness, understanding and an instintive aring nature. Suh attributes may be valued as highly as pratial help and 15, 29, rated more highly than formal professional qualifiations. Having a say and ontrol over servies, inluding the tasks and timing of servies and who delivers them. Puntuality is important for some 14, 26, 34, 36 older people, partiularly those with speial medial needs. Having ontrol inludes being able to make a ontribution being an ative partiipant rather than a passive reipient. 15, 19 This is important for people in residential are settings, who may value being able to ontribute to preparing meals, for example. 12 Having a say requires information, opportunities to disuss possible options with a knowledgeable person and being informed about hanges in servies. Older people from minority ethni groups may require providers who 6

24 Researh review an speak their own language in order to have a say. 11, 34 Having a say also requires servies to be flexible in response to hanges in older people s apaities and preferenes this is partiularly important for 7, 15, 22, 26, 34 those living alone. Value for money, whether servies are privately purhased or users ontribute means-tested o-payments. 11 A good fit with informal soures of support, espeially if servies 11, 15 prevent unwanted reliane on family are. Compatibility with, and respet for, ultural and religious preferenes. 34 Table 1 Summary of soial are outomes desired by older people Outomes involving hange Changes in symptoms and behaviour Improvements in physial funtioning Improving morale Outomes involving maintenane or prevention Meeting basi physial needs Ensuring personal safety and seurity Living in a lean and tidy environment Keeping alert and ative Aess to soial ontat and ompany Having ontrol over everyday life Servie proess outomes Feeling valued and being treated with respet Being treated as an individual Having a say and ontrol over servies Value for money A good fit with informal soures of support Compatibility with, and respet for, ultural and religious preferenes 7

25 ADULTS SERVICES Outomes and diversity Wealth, health status, gender, living arrangements and ethniity all ontribute to the diversity of older people s attitudes and aspirations 37. The previous setions have highlighted outomes that are partiularly important to older people with dementia, from blak and minority ethni ommunities, and living in residential are. In general, different groups of older people prioritise different outomes and dimensions of quality of life 8, 27, p 760. Netten et al 38 found that people aged 85+ were more onerned about food and nutritional outomes and less onerned about soial ontat than younger respondents; people living with others ranked soial partiipation and involvement muh higher than those living alone. Older people with reent sight loss also prioritise different outomes, 39 as follows: meeting people and friendship getting information and advie about speialist servies and equipment having someone to talk to about personal feelings building onfidene to go out and do things outside the home relearning how to arry out everyday tasks in the home getting help with pratial everyday tasks. There is relatively little evidene on the speifi outomes desired by minority ethni elders; muh of the researh literature fouses on barriers to are. However, despite their diversity, maintaining independene and having ultural needs reognised are ommonly desired outomes. Askham et al 40 found that speifi language and food provision was important to many blak older people, although for Afro-Caribbean elders being treated fairly, kindly and effiiently was more important. Reviews by Mold et al 41 of Asian and other minority ethni older people in are homes and by Butt and Mirza of blak ommunities and soial are 42 provide examples of how older people from minority ethni groups value the proess outome of ompatibility with, and respet for, individual ultural and other preferenes, inluding: 8

26 Researh review sensitivity to religious beliefs and praties interpreting servies staff from similar bakgrounds same-sex workers for intimate personal are halal and vegetarian food opportunities to meet others from similar bakgrounds. Older people with dementia partiularly value efforts to ensure that they an ommuniate preferenes; maximise ontrol over daily life; 43 and keep alert and stimulated. 44 Culturally appropriate servies, methods of working, language and ommuniation (inluding non-verbal ommuniation) were also highlighted in a study of minority ethni older people with dementia (although information was obtained from professionals rather than older people themselves) Views of the User Advisory Group Members of the User Advisory Group endorsed the importane of the outomes identified in researh with older people, partiularly the reognition of individual needs and differenes. However, they pointed out that some older people might need help to think about the outomes they want from someone who knows their situation in the round. These outomes may not neessarily be what other people, suh as arers, onsider is best for them negotiation and trade-offs are neessary. There was strong agreement about the ritial importane of hoie and ontrol; transport was also essential so that older people ould take advantage of available servies. 1.4 Organisational arrangements impeding outomesfoused servies Introdution This setion draws partiularly on researh into the organisation and impat of home are servies. Sine the 1993 ommunity are reforms, poliies have prioritised supporting older people in their own homes. This has led to a major expansion in home are servies, espeially for 9

27 ADULTS SERVICES very frail older people who would otherwise risk entering institutional are. Reent researh mirrors these poliy developments. The 1993 reforms enouraged quasi-markets, with loal authority soial servies departments purhasing servies from voluntary and forprofit providers. Muh reent researh therefore fouses on the operation of quasi-markets in delivering outomes-foused servies. More reent developments in soial servies assessment, are planning and ommissioning following initiatives suh as Fair Aess to Care Servies (FACS) guidane and the Single Assessment Proess (SAP) are not yet refleted in published researh Assessment Assessments are important in establishing eligibility for servies and an establish a baseline of desired outomes against whih later ahievements an be heked. 35 Outomes-foused approahes an be inhibited by bureaurati approahes in whih pratitioners report spending less time with users and inreasingly routinised proedures 45, quoted in (19, p 11) 46. Outomes-foused approahes are not enouraged by servie-led rather than needs-led assessments. 11, 47 Desired outomes may be ignored beause of health and safety onerns; thus lifting and handling restritions an redue older people s movement and reate unneessary dependene 19, p 21. The language used in assessments an be a barrier to an outomesfoused approah. Assessments need to be ompatible with older people s identity and self-image otherwise potential servie use may be disouraged. 48 Thus older people who define themselves as ompetent will refuse servies that emphasise their dependeny. 19 Despite poliies to the ontrary, in pratie assessments an overlook emotional and psyhologial needs and the meanings older people attah to these. 19, 49, 50 It is possible that reent assessment approahes vary markedly aross loal authorities and are likely to be less responsive to ertain needs of older people (for example, depression) 25, p 39. Indeed, one study found that developments in pratie following the NSF for older people and FACS have indeed redued the risk of assessment overlooking older people s emotional and psyhologial needs; however, no researh evidene was found on the impat of these measures. 10

28 Researh review Older people s servies remain under-funded. 51 Thus staff onduting assessments may find themselves juggling onfliting roles of neutral failitator, impartial advisor and resoure gate-keeper. Hardy et al 52, p 487 found that strit finanial ontrols and ost-eilings onstituted major onstraints on [are managers ] ability to operate within and between these roles. These resoure onstraints may lead to some desired outomes being overlooked. Older people themselves may find outomes-foused assessments diffiult, with their ability to identify outomes restrited by their pereptions of soial servies responsibilities; of the help they think it legitimate to request; and of the servies they think are available. 19 Older people from minority ethni groups are partiularly disadvantaged in knowing what servies are available 42 and in any ase may not use servies if they are pereived as ulturally inappropriate. 53 Being able to make hoies about servies is ruial to the outomes of having ontrol over everyday life and having a say. However, Hardy et al 52 found that during assessments older people and arers were offered little hoie between servies or how these were provided. For some users, hoies may be restrited by a shortage of providers, a partiular problem in rural areas, 9 or where purhasers ontrat only with lowest ost providers Reviews Outomes-foused approahes are failitated by regular reviews that monitor servie quality and ensure servies ontinue to meet the outomes identified at assessment or that reflet hanged irumstanes. However, this is diffiult if, as sometimes happens, assessment and review ativities are organisationally fragmented or onduted by different staff. 9 Moreover, workload pressures on soial servies staff may mean that reviews are onduted irregularly, if at all. 34, 35, 54 Domiiliary Care Standards Regulations (2003) require all providers to review their ustomers at least annually, but this may be unduly onerous for providers with high numbers of users reeiving only small levels of servies. 26 Hardy et al 52, p 489 also found review proedures to be underdeveloped and variable, both within and between soial servies authorities. Formal reviews and re-assessments ourred for only 42 per ent of soial serv- 11

29 ADULTS SERVICES ies lients during Reviews are likely to onentrate on older people whose servies are provided by independent agenies rather than in-house providers, on new servie users and on users onsidered 26, 52 problemati. Although some soial servies authorities have established speial review teams, these disrupt the ontinuity of relationships between users and are managers. Fragmentation may be further enouraged by performane indiators that measure user and arer assessments, reviews and satisfation surveys as separate ativities Purhasing of are pakages How are managers purhase servies from providers an reate barriers to outomes-foused servies. Again it is important to note that the researh reviewed here was onduted before the publiation of FACS guidane; no researh was found that evaluates the impat of this guidane on are managers purhasing ativities. The 1980s ommunity are demonstration projets gave are managers small aseloads and devolved budgets to purhase flexible, individually tailored servies. 46, 56 However, sine 1993 are managers have had less fae-to-fae ontat with lients; adopted inreasingly routinised approahes; and been restrited by finanial onstraints. 9, 46 There are signifiant variations between soial servies departments in their are management arrangements 46, p 682, partiularly whether the servies ommissioned extend beyond basi physial maintenane to wider, quality of life outomes. 57 There are also variations in the autonomy devolved by are managers to front-line servie providers, 26, 46, 57 with some provider managers frustrated by inflexible and unompromising ommissioning arrangements. For example, if no allowane is made for time spent travelling between appointments, home are staff may be tempted (or enouraged by their manager) to urtail visits one essential tasks are ompleted. Changes that users wish to make to the ontent or timing of a servie may have to be notified to are managers and new assessments onduted. 26, 34, 36 Suh restritions may be partiularly true of servies ommissioned from independent (voluntary and for-profit), rather than in-house, providers. 57 Purhasing home are servies for speified periods of time or for 12

30 Researh review speifi tasks has different impliations for servies ability to meet desired outomes: 26 Time-entred visits are easier to deliver puntually. The osts of time-entred visits are easier to alulate, whih may affet user pereptions of value for money. Time-entred visits offer opportunities to undertake extra tasks or just talk one essential jobs are ompleted. Task-entred visits an be extended or shortened aording to hanging irumstanes. Barriers to outomes-foused home are servies arise when soial servies purhasers plae restritions on the range of tasks they are willing to pay for. Older people have expressed partiular onern about the lak of help with housework and other domesti tasks, 9, 15, 34 despite the fat that having a lean and orderly home environment is an important maintenane outome. 15 A further barrier is the failure by are managers to reognise the importane of relationships between older people and paid are staff; the quality of these is entral to proess outomes. Thus older people may benefit from any spare time left in time-entred visits if are staff an use this simply to talk. However, some are managers disourage the 15, 26 development of suh relationships as unprofessional Provider-level barriers The environment within whih independent (voluntary and for-profit) servie providers operate an also impat on the delivery of outomesfoused servies. Relationships with staff are ruially important to the proess outomes of soial are. However, these relationships an be impaired by poor ontinuity, whih an itself be impaired by problems 9, 47, 56 of reruiting and retaining staff. There are substantial shortfalls in provider apaity, inluding both numbers of organisations (partiularly in rural areas) and problems of staff reruitment and retention (partiularly in rural, affluent and inner-ity areas). Sine 1993, both overall demand for home are servies and the range and omplexity of skills required of staff have inreased, 13

31 ADULTS SERVICES while the shift from in-house to independent setor provision may have worsened pay and onditions for some staff. These fators affet staff reruitment and retention; their availability to work the hours that users prefer; 9, 22, 26, 47 and ultimately the reliability, quality and responsiveness of servies. 26 For example, feeling in ontrol of daily life requires the delivery of servies at times that fit in with daily routines. 11 This an be jeopardised if providers annot meet heavy demand early in the mornings and in the evenings. 22 The organisational arrangements of provider organisations also affet relationship-based proess outomes. Relevant arrangements inlude the basis on whih home are staff are employed (part-time, full-time, guaranteed pay per week or pay per ase and so on); the number of workers alloated to eah older person; and organisations poliies on requests for additional or different tasks to be performed from those set out in the are plan. 26 For example, some providers prohibit staff from arrying out tasks suh as hanging light bulbs, finding a plumber or aring for pets that are unproblemati in other organisations. 57 Independent providers whose business depends on a few large loal authority blok ontrats may be unwilling to respond to older people s requests for additional privately purhased help to meet desired outomes beause of anxieties about jeopardising their main ontrats. 26, 57 Providers may also be relutant to offer low-skilled domesti help like shopping and houseleaning for private purhase by older people; having invested in staff training, providers may be relutant to ask staff to do lower-skilled work. Patmore 26 found providers anxious about being typeast as low skilled and therefore low ost. This assumption ould be at odds with the atual osts of delivering a quality servie and disadvantage providers in Best Value reviews Role of ommissioners Commissioners exert major influenes over whether providers deliver outomes-foused servies. 26, 57, 58 There is some evidene 26, 57 that these influenes are partiularly marked in relation to independent setor, rather than in-house, servies. One strand of researh has examined how ommissioning arrangements affet providers motivation. Some providers reported poor relationships with ommissioners, omplaining of late payments; poor 14

32 Researh review review and follow-up of lients; low pries; and systemati biases towards in-house providers. Any poor performane by providers was related to this dissatisfation. 52, Some in-house servie managers reported that the purhaser/provider split had made them subordinate to people they previously regarded as their soial worker peers and this was demoralising. 26 Different types of ontrat (spot, blok, all-off, ost-and-volume and grants) an affet the responsiveness and quality of home are. 58 Some loal authorities operate heapest first poliies when setting ontrats for home are servies; 9 driving down osts an drive down quality. The ontrats for home are servies offered by many authorities have been ritiised for being short term and inluding onditions that may be unattrative to providers. 59 Many ontrats ontain little flexibility to vary pries. This helps purhasers plan their expenditure (and may also help safeguard provider stability), but makes providers vulnerable to risk arising from hanges in osts that our during a ontrat and redues their ability to tailor servies to individual users requests and irumstanes. Flexible, spotpurhasing or ontingeny-sensitive priing would shift some of the risk bak to purhasers and provide greater inentives to providers to respond to hanges in users irumstanes Importane of ommuniation Researh emphasises the importane of ommuniation between providers and purhasers for outomes-foused servies. Communiation is important: Between are managers, ommissioners and providers, if ontrats with providers are to be adjusted to reflet user need and preferene 9, p 418. Between providers and are managers, with the latter ommuniating servie users preferred outomes; and providers keeping are managers informed about hanges in their poliies and praties and in users irumstanes. 9 Between provider managers and front-line home are staff, so that hanges in irumstanes or requests for different types of help are quikly identified. 15

33 ADULTS SERVICES Between users, providers and purhasers, with larity over who is responsible for notifying users of hanges in servies. Between front-line staff, if more than one worker is involved with an older person. Barriers to ommuniation at any of these points an threaten the flexibility and responsiveness of home are servies. 34 Care managers and front-line staff also have signifiant roles to play in providing older people with the information they may need to ahieve desired outomes. However, soial are servies often lak the resoures to develop, maintain and regularly update their information databases, partiularly about servies, benefits and failities outside the remit of their own ageny, thereby restriting staff apaity to fulfil this role Impat of the health soial are divide The division between health and soial are responsibilities an be a barrier to outomes-foused servies and a soure of frustration to servie users. 62 Godfrey and Callaghan 19, p 5 found that health and soial are needs were inextriably tied in with [older] people s soial and emotional lives need ould not be ategorised as soial or medial. However, soial servies are managers may be unaware of the potential for hange outomes that ould result from improvements in funtional abilities; health professionals may fail to appreiate that some disabilities an be improved by a range of non-health servies. 63 There is also onsiderable under-identifiation of mental health problems among older people, inluding those reeiving soial servies, 64, 65 despite evidene of the interrelationship between mental health, physial disability and poor soial networks. A ombination of servies, inluding both medial treatment and soial support, is therefore likely to be appropriate in maximising hange outomes. 66 Ware et al 9, p 420 found that separate budgets for health and soial are undermined joint working. The SAP, partnerships using Setion 31 of the Health At 1999 and ollaborative working in response to the introdution of reimbursement for delayed disharges may all have ontributed to reduing the operational barriers between health and soial are servies for older people. However, no researh into the impat of 16