Personalisation for older people and direct payments – time to re-discover person-centred care? John Woolham, Guy Daly, Nicole Steils, & Katrina Ritters Faculty of Health and Life Sciences [email protected] Structure 1. 2. 3. From person centred care to personalisation Personal budgets and direct payments Perspectives: a. Policy analysis of issues arising from PBs & DPs b. Policy analysis of issues arising from PB and DPs specifically to older people c. Research evidence 4. Conclusions 1. From person centred care to personalisation • ‘Person-centred’ support easy to describe • ….but hard to achieve – – – – Case /care management for older people IPPs & shared action planning for people with learning disabilities Person-hood for people with dementia Transference of learning from project to service always difficult • The term ‘personalised’ has replaced ‘person centred’ – Often seen as the same by practitioners but • Greater emphasis on some values: ‘self-direction’, ‘user empowerment’, ‘personal choice’, • ‘Support’ is now used alongside or instead of ‘care’ • User rather than professional definitions of need – Adult Social Care staff refer to people with social care needs as ‘customers’ not ‘clients’ or ‘service users’ 1. From person centred care to personalisation • Definitions vary. ‘Personalisation means thinking about care and support services in an entirely different way. This means starting with the person as an individual with strengths, preferences and aspirations and putting them at the centre of the process of identifying their needs and making choices about how and when they are supported to live their lives’. Carr (2011) p. 3. ‘Individuals not institutions take control of their care. Personal budgets, preferably as direct payments are provided to all eligible people. Information about care and support is available for all local people, regardless of whether or not they fund their own care’ Department of Health Vision for Social Care. Nov. 2011 p. 8. 2. Personal budgets and direct payments • Direct payments and personal budgets seen as the means by which personalised care and support will be delivered. • A (very) short history of personal budgets and direct payments – – – – Independent living fund, cash for care Campaigns by younger disabled people for more control over care Direct Payments Act 1997 ‘In Control’ and campaigning for self-directed support • Attracted local authority support • Led to plethora of small scale local studies from local authorities • In Control Evaluations 1 & 2. – DH endorsement • Commissioned IBSEN • £500m ‘Transformation Grant’ 2. Personal budgets and direct payments • • • Transformation Grant was announced without reference to research evidence (so much for ‘what works’!) Some important findings from IBSEN ignored. Subsequent research & policy guidance largely about how to make PBs and Direct Payments work - not whether it was the right approach. ‘….older people did not find the individual budget system used in the pilot as easy to use as the other groups, and they did not appear to like the idea of managing their own support’. Extract of IBSEN team summary ‘Since this research was undertaken more support has been put in place for older people and early indicators have shown that this has transformed their experiences of using individual budgets. We will conduct further research to investigate the impacts further.’ Phil Hope M.P., Minister of State for Care Services 3. Views: a. Policy analysis of issues arising from PBs & DPs Advocates • • • • • • • • Better outcomes for social care users Greater empowerment of recipients, thereby conferring more dignity and personal responsibility fuller citizenship and greater inclusion more contestability/competition (aimed at using market mechanisms to improve quality) and diversity in local care economies leading to: greater choice and more effective use of public money through: greater efficiency in targeting of care and: reduced CASSR care management input Response to failures of care management Sceptics • • • • • • Agendas of disabled people subverted by government Public services should not be about delivering ‘choice’ Citizenship and universality undermined by consumerism and choice Downsides to choice Transfer of responsibility from state to individuals & privatisation of risk links to wider disquiet about public sector reform: – – – – shrinking the state, replacement of universal social rights with (increasingly rationed) consumer choice, the dominance of managerial not professional cultural values in CASSRs, potential fragmentation of care provision following marketisation. 3. Views: b. Policy analysis of issues arising from PBs & DPs specifically relating to older people Older people are the largest consumers of social care services. Values underpinning key policy documents (e.g. PPF 2007, Shaping the Future of Care 2009) are problematic for older people • People who can exercise independence and self-determination & those who can’t: ‘choiceandcontrol’ vs ‘careandprotection’ (Barnes 2011) • Re-defining of care as a way to restore people to play a role as active citizens – reshaping a fundamental human need to something instrumental and narrowly defined. (Lloyd 2010) • Older people personal budget and citizenship ‘For many older people, achieving full citizenship is not an ‘aim’ in the same way as…for many younger disabled people. Most older people have already experienced citizenship in the form of an active role in family, work and community life: it is not an unrealised aspiration’. (Orellana 2012) Are older people being ‘squeezed into a one-size-fits-all model of personalisation’? 3. Views c. Research evidence Glasby (2012) • • • both sides appealing to evidence (advocates = any evidence will do, sceptics = not enough, evidence, evidence not good enough) Calls for a move away from formal and quantitative research towards a more inclusive approach, combining research with practice wisdom. But… not all findings created equal • • Not many quantitative but many qualitative: too little attention to quantitative not too much Tendency to generalise too much from qualitative studies 3. Views c. Research evidence Reviews: Manthorpe et al (2011) 161 studies. • Many studies small scale • Some were commentaries not empirical studies • Some reported on experiences of people most likely to be offered /take up a budget so bias to positive findings Zamfir (2013) 68 studies specifically focused on older people • Little evidence PBs had improved lives of older people • Where improvements had occurred this was because support was adequate 3. Views c. Research evidence Empirical studies In Control (x 3) • • First two studies low numbers, sampled from people likely to be favourably disposed to PBs Third study (POET) found older people less likely to respond positively to budget ownership but a precondition was effective support. IBSEN • • • Best study to date Evidence that PBs can work for younger adults No evidence they work for older people 3. Views c. Research evidence Own work: • • • No evidence of benefit to older people compared to younger adults Much larger budget size did not translate into much better outcomes for older direct payment users compared to ‘traditional’ users (Woolham & Benton 2012) Outcomes not significantly different for older DP and MPB users (2014, unpublished) Dignity Control Accommodation 100 90 80 70 60 50 40 30 20 10 0 Occupation Cleanliness Food & Drink Safety Social Dignity Control Accommodation 100 90 80 70 60 50 40 30 20 10 0 Occupation Cleanliness Food & Drink Safety Social Figure 8. Spider graph showing profile of Figure 9. Spider graph showing profile ASCOT social care related quality of life of ASCOT social care related quality of outcomes for direct payment users life outcomes for managed personal Figure 5. 4. ADL cost for for older respondents 65+(Overall comparing bootstrapped Figure GHQand costscores scores older respondents (65+) only, comparing (Overall SCRQoL =and 0.75) budget users SCRQoL = 0.70). data for ‘traditional’ userspackage (left) and budget (right). bootstrapped data forpackage ‘traditional’ users (left)holders and budget holders (right). Conclusions: Do Direct payments and personal budgets work for older people? • • • • • Campaigns for direct payments and self directed support led by younger adults not older people Older people do not achieve such good outcomes as younger adults when given a Direct Payment. The ‘model’ of personalisation and use of direct payments as the means of achieving personalised support doesn’t suit many older people: The size of the direct payment doesn’t enable people to have much more than their basic care needs met Self direction and choice and the organisation of the direct payment is often mediated by a relative Conclusions: • • • • Restoration of lost abilities to enable full community participation isn’t always realistic Independence isn’t always what older people people want. Empowerment may mean the ability to ask others to do things for or with them rather than them having to do it themselves. Control may be more effectively exercised through opportunities for older people to develop relationships of trust and friendship. • To achieve this we may need to think less about choice and much more about what good care looks like. Good care depends on the quality of the care relationship. ‘Commissioning on the basis of ‘time and task’ has excluded the costs of the emotional labour needed to build a relationship with the user’ Lewis & West 2014 p.5. This has been largely overlooked by English policymakers. Conclusions The effective use of direct payments and user control reinforces a view of care-ascommodity in which customer-is-king. Our research suggests that though older people want choice and control, they want to exercise it in a different way. Person-centred care may offer a better approach than personalised support to the kinds of issues facing older people but would require • • • Skilled staff Matching carer with person with care needs to enable relationship building Adequate remuneration Selected references • • • • • • • • • • • • • • • Barnes, M., (2011) ‘Abandoning Care? A Critical Perspective on Personalisation from an Ethic of Care’. Ethics and Social Welfare 5(2). p. 153-167. Beresford, P. 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