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Prevention, personalisation and
prioritisation in social Care:
Squaring the circle?
A report commissioned by CSCI for the review of
eligibility criteria
Bob Hudson & Melanie Henwood
August 2008
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Prevention in Social Care: The Challenge of Intermediate Care and Long-Term Care Services, Exams of Decision Making
The conceptualization of prevention in social care through the lens of intermediate care services. It discusses the shift in home care policies and the introduction of intermediate care services to prevent unnecessary hospital admissions and long-term care. The document also highlights the challenges of implementing these services equitably and the importance of addressing the needs of older adults and disabled people.
What you will learn
- What are the challenges of implementing intermediate care services equitably?
- What are the implications of devolved governance on equity and social justice in social care services?
- How has the shift in home care policies impacted the provision of intermediate care services?
- How do housing adaptations and equipment impact health and social care budgets?
- What are the different models of prevention in health care and how do they apply to social care?
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Prevention, personalisation and
prioritisation in social Care:
Squaring the circle?
A report commissioned by CSCI for the review of
eligibility criteria
Bob Hudson & Melanie Henwood
August 2008
1 Introduction
1.1 This paper arises from, and builds upon, the review of Fair Access to Care Services (FACS) undertaken by the authors for the Commission for Social Care Inspection (CSCI) in 2008, 1 and which informed Chapter 8 of CSCI’s The state of social care in England 2006-07 report. 2 The report expressed concern about the tightening of the FACS eligibility criteria and the impact upon the lives of people excluded from support, including those who fund their own care. In response to the report, Care Services Minister Ivan Lewis MP asked CSCI to undertake a review, to be completed by 15 September 2008, which will look at national definitions of need and their application at a local level. This paper is being prepared as background to the review of eligibility criteria (which has a number of components).
1.2 Eligibility for and access to social care are controlled in a number of ways. The current framework of FACS provides a system of prioritisation between low, moderate, substantial and critical level needs. Any framework for allocating scarce resources must, however, be consistent with dominant policy objectives. The purpose of this background paper is to examine the relationship between policy imperatives and eligibility criteria. The assumption we make is that eligibility criteria should constitute a ‘second order’ decision contingent upon ‘first order’ policy objectives; in other words, the key policy imperatives for social care should determine primary eligibility for support. To assign an independent status to eligibility risks such a framework pulling in a different direction to desired policy outcomes.
1.3 The FACS framework has been in place since 2002 and was developed to be consistent with the policy objectives of the 1990s, in particular to focus attention upon people with the greatest assessed needs. However, adult social care is on the cusp of major transformation, with a Green Paper expected later in 2008. A-wide ranging consultation will explore options for the long-term funding of the care and support system “to ensure that it is fair, sustainable and unambiguous about the respective responsibilities of the state, family and individual”.^3
1.4 In advance of this debate – and almost regardless of its outcome – a parallel process of reform is to start from April 2008 to transform the purpose of the adult care system. While the Green Paper reforms might be seen as concerned largely with questions of how to organise and pay for social care, the immediate policy reforms are addressing what it is that social care should deliver. The concordat (Putting People First), published by the Government in December 2007, set out the vision which will place personalisation at the heart of a community-based support system “focused on the health and wellbeing of the local population”. The values which underpin the transformation agenda are those of seeking to support independent living and maximising quality of life: “The time has now come to build on best practice and replace paternalistic, reactive care of variable quality with a mainstream system focused on prevention, early intervention, enablement and high quality personally tailored services. In the future, we want people to have maximum choice, control and power over the support services they receive.”
1.5 It is vital to consider the issue of eligibility in the light of the changing policy agenda, and it is for this reason that we precede our examination of eligibility frameworks with a brief review of the two key issues central to the concordat – prevention and personalisation.
2.5 This is an important conclusion since the current focus on prevention within the framework of Putting People First makes no attempt to define its terms beyond a very general nod towards ‘early intervention’. This is not simply an academic or semantic debate; without clarity over objectives there can be no consensus around appropriate outcomes, and no judgement therefore of the extent to which interventions are effective. By the same token it will be difficult to develop an eligibility framework that is consistent with clear policy objectives.
Intermediate care
2.6 Intermediate care is a particular variant of prevention focused on promoting independence and thereby preventing admission to, and supporting discharge from, hospital. The major focus of intermediate care has been on services which target frail older people. The national evaluation of costs and outcomes of intermediate care for older people 8 dates the formal policy to the NHS Plan of 2000 9 (although it is also clear that local initiatives had been under way since the early 1990s), and subsequent amplification in the National service framework for older people 10 of the following year which defined the policy in these terms: “Older people will have access to a new range of intermediate care services at home or in designated care settings, to promote their independence by providing enhanced services from the NHS and councils to prevent unnecessary hospital admission and effective rehabilitation services to enable early discharge from hospital and prevent premature or unnecessary admission to long-term residential care.”^11
2.7 The national service framework (NSF) described the need for services that would “bridge the gap between acute hospital and primary and community care”. The need for such services had been highlighted, in particular, by the Audit Commission, which identified the problems caused by lack of alternative preventive and rehabilitation services, and the need to break the ‘vicious circle’ of growing admission to hospital, increased pressures on beds, earlier discharge and more people being admitted to long-term care. 12
2.8 The NHS Plan introduced additional investment to support the development of “new intermediate care and related services to promote independence and improve quality of life for older people”. Working together (and where appropriate making use of arrangements under the Health Act flexibilities), health authorities, primary care trusts and local councils were expected to develop a range of intermediate care services. Guidance issued in 2001 identified both the criteria for services to be classed as ‘intermediate care’ and the various models that might be included (see the box below). This can be seen as a response to the diversity of schemes that were being described as ‘intermediate care’ (and the consequent confusion), but it was also a clear attempt to drive further development in a particular direction.
Intermediate care Service models in intermediate care
- Rapid response – services designed to prevent avoidable acute admissions by providing rapid assessment and – if necessary – rapid access to short-term support at home.
- Hospital at home – intensive support in the patient’s own home above that normally provided in primary care in order to avoid acute admission or to facilitate earlier discharge from hospital.
- Residential rehabilitation – short-term therapy and enablement in a residential setting. This may be ‘step-down’ from an acute hospital stay, or ‘step-up’ from home to avoid admission to hospital or residential care.
- Supported discharge – a short-term period of nursing and/or therapeutic support in a patient’s own home.
- Day rehabilitation – a short-term programme of therapeutic support at a day hospital or day centre. In order for services to be classified as ‘intermediate care’ they must be:
- Targeted at people who would otherwise face unnecessarily prolonged hospital stays or inappropriate admission to acute in-patient care, long- term residential care or continuing NHS patient care.
- Provided on the basis of comprehensive assessment, resulting in a structured care plan that involves active therapy, treatment or opportunity for recovery.
- Have a planned outcome of maximising independence and typically enabling people to resume living at home.
- Are time-limited, normally lasting no more than six weeks and frequently as little as two weeks.
- Involve cross-professional working, with a single assessment framework, single professional records and shared protocols. HSC 2001/001 : LAC (2001)1 Intermediate Care , Department of Health, 19 January 2001.
2.9 Intermediate care is clearly a policy designed to prioritise health and social care service interventions for categories of people deemed to be at high risk of admission to hospital or permanent residential care, or of remaining in hospital too long following admission. While the major drivers for the policy were, as the Audit Commission analysis made clear, concerns over the resource impact on acute hospitals unable to maintain patient ‘throughput’, the policy also has the potential to deliver considerably improved outcomes for older people. Has it, in fact, done so? As a 2002 guide from the King’s Fund for health and social care professionals on
were “at the expense of a wider focus on securing better outcomes for older people” , 18 and indeed were often associated with a rise in permanent admissions from hospitals to care homes.
2.14 Another major evaluation of intermediate care for older people^19 also found considerable diversity in the interpretation and implementation of intermediate care, and: “…underlined the importance of intermediate care being seen as a set of bridges at key points of transition in the person’s journey from hospital to home (and vice versa) and from illness/injury to recovery.”
2.15 Unlike the national evaluation cited above, this study concluded that it was unhelpful to distinguish between different models of intermediate care on the basis of “whether they are preventive, diversionary or rehabilitative”, but did suggest that a main question for further investigation should be to “identify what particular services and combinations work best for users with particular needs and in particular circumstances”. 20
2.16 Intermediate care is intended (as the circular quoted above made clear) to be targeted on the people most in need of it, and most at risk of deterioration without intervention. Godfrey et al found that services were used primarily by older people, with the majority of people in all types of intermediate care being aged over 75, and in most services people aged over 85 made up nearly half of all admissions. What was also striking was that more than half the people who used intermediate care services had not been using formal services prior to their intermediate care episode. The fragility of informal support arrangements was typically broken by a crisis which then necessitated intervention at a critical point “on the cusp of the shift from independence to dependence.” 21 The obvious question that this raises is whether support needs to be provided at a much earlier stage for people who are otherwise outside of the system, or below eligibility thresholds for support (such as we have documented in previous work for the Commission examining the impact of FACS^22 ).
2.17 Evaluating the cost-effectiveness of intermediate care interventions (in terms of duration of service, cost per episode, and effectiveness in diverting people from hospital or long-term care) indicates nearly two thirds of people able to return home on discharge from intermediate care. 23 In addition to these dimensions of costs and outcomes are the important aspects of qualitative evaluation and quality of life criteria. Godfrey et al found intermediate care making “a significant difference” to people’s lives, with the service being viewed positively – particularly in the user- centred focus which contributed to maximising people’s abilities and building their confidence. Barton et al similarly found patients associated the experience of intermediate care with “patient-centredness, flexibility and opportunities for independence”. The aspect of care that received the lowest satisfaction scores was the timing of discharge, with patients often finding the six-week cut-off point came too soon and with no ongoing support with their needs.
2.18 Intermediate care is clearly about much more than functional rehabilitation and enabling people to return to a level of independence. As McLeod et al point out, there is also a potential contribution in facilitating re-engagement in social networks, and having regard for people’s psychological well-being alongside their physical health.^24
Moreover, such dimensions are integral to the definitions that people (including frail older people) attach to good health, which extend beyond ‘not being ill’ to “enjoying and negotiating the benefits for psychological and physical well-being of multiple dimensions of social networks”. 25 The importance of defining prevention and rehabilitation in comprehensive terms which address ‘high-level’ or intensive support alongside ‘high-coverage’ simple services has been emphasised by others, including work by CSCI tracking the experience of people discharged from hospital. 26
2.19 McLeod et al studied five Age Concern pilot aftercare social rehabilitation projects (following discharge from hospital). Social rehabilitation was defined as time-limited interventions to help restore confidence and skills lost through injury, bereavement or other trauma or loss, and focusing on motivation and restoring valued social roles and networks. In addition to underlining the importance of access to social networks in people’s recovery, the study emphasised the connections between such support and ‘low-level’ social care interventions which facilitated recovery and social engagement.
2.20 Intermediate care clearly forms an important part of services concerned with ‘prevention’. Because of the variety of schemes and models of support that are included under the general banner of intermediate care, it is important that there is clarity about the specific objectives of and outcomes from any given scheme. The Wanless review also emphasised the need for clarity on the desired outcomes, and concluded: “If these are immediate improvements to quality of life and/or functional status, then the most recent evidence suggests targeting patients with the greatest clinical need whose intermediate care services will be relatively expensive. If immediate cost savings are the main aim, then admission avoidance schemes should receive more emphasis, although this does not take long-term care costs into account. A balance is needed between the two approaches.” 27
2.21 Interventions which focus on admission avoidance occupy a continuum. At one end are those which address the high risks which often precipitate an emergency admission (such as falls), while at the other are the ‘low-level’ interventions which may support people in living their lives independently for longer. Curry’s review of evidence on falls prevention cites estimates that accidental falls represent an annual cost to health and social services of £1 billion, with some 41% of this falling on social services. In addition to the potential savings that could arise from preventing falls and injuries (particularly hip fracture), there are wider potential benefits in reducing the likelihood of a fall that typically marks the onset of a downward spiral of increasing dependency.
2.22 There are obvious problems with identifying cause and effect in falls prevention programmes, and the range of approaches in different studies, together with different measures and outcome data, make it “impossible form this information to make generalisations about the cost effectiveness of falls prevention services”.^28 Interventions which concentrate on improving physical functioning (through muscle strengthening and balance exercises) may not prove cost-effective in terms of overall impact on health costs, but as Curry points out, wider benefits may accrue. A study in New Zealand, for example, found that participants in a prevention programme had
user-defined outcomes. Qureshi et al have distinguished between outcomes concerned with change, maintenance and process. Maintenance outcomes are those which principally address well-being and quality of life (meeting basic physical needs; ensuring personal safety and security; living in a clean and tidy environment; keeping alert and active; having access to social contact and company, and having control over everyday life). 35
2.27 Retaining independence and autonomy have a universal resonance, as Harding has pointed out: “…these aspirations are common to all older people, not just those who are relatively active and healthy…the evidence from older people themselves is that inclusion and quality of life are just as important to those whose health or mobility are impaired as it is to more active older people.”^36
2.28 If the area of intermediate care is beset with problems of definition, this is no less true in the case of ‘low-level’ prevention services. As Curry has pointed out, no standard definition appears to exist, however: “low-level or low- intensity interventions are those services or initiatives that require minimal resource input in terms of working hours and do not necessarily require the input of specialist professionals. Examples of services that might be classed as low- level include help with those tasks that people find difficult as they get older, such as gardening, laundry, cleaning and shopping.” 37
2.29 However, this apparently straightforward definition is muddied by the fact that other definitions of ‘low-level’ interventions sometimes include home adaptations and home repair schemes, as well as wider interventions concerned with social inclusion and well-being. A 1999 review by Godfrey, undertaken for the Anchor Trust and the Joseph Rowntree Foundation, found the research knowledge was insufficiently robust to provide definitive answers about the impact of ‘low-level’ social care interventions, but that this does not in itself mean that preventive interventions are not effective.^38
2.30 Curry also found little quantified evidence on the outcomes of ‘low-level’ interventions, but noted the considerable volume of qualitative evidence which typically points to the high value attached to such interventions.^39 40 Not only are ‘low-level’ interventions of intrinsic value to the people who use them, but typically they also offer benefits in terms of people being able to maintain control, dignity and independence (objectives that, as we have noted earlier, are central to the current transformation agenda in adult social care).
2.31 The value of ‘low-level’ interventions is not really in doubt; but this is not necessarily the same as demonstrating that ‘low-level’ support has a direct and quantifiable benefit in preventing deterioration or the need for long-term care. This is not to say that ‘low-level’ support is not cost-effective, but to be very clear about the objectives that need to be established for these interventions, and the appropriate measures that need to be developed for their evaluation. Improving the psychological and mental health of older (and other) people, enabling them to maintain social networks, and to live in an appropriate environment over which they have some control, are important outcomes in their own right. As Qureshi and Henwood conclude:
“Effective services from the perspective of older people are those which: directly maintain, or remove barriers to achieving, quality of life (keeping clean and comfortable, living in a clean and orderly environment, being safe, having access to social contact and company, being able to keep active and alert, and having control over one’s life) and which do so in a way which ensures that people are treated as fellow citizens with respect for their individual priorities and circumstances.” 41
2.32 Moreover, these quality of life dimensions are not unique to older people, but might more usefully be conceived as dimensions of citizenship.
Partnerships for Older People Projects
2.33 Much of the above discussion around prevention in social care has explored approaches to prioritising support for people who are identified through a largely professionally determined agenda. As we have noted, a major focus of prevention – particularly the development of intermediate care – has been on reducing delayed patient discharges from hospital. In March 2005 the Department of Health announced funding of £60m for councils to develop “innovative ways to help older people avoid emergency hospital visits and to live independently longer” through services “which enhance the independence, health, and well-being of older people living at home.” 42 Rather than providing support at the point of crisis (at a major transition between independence and dependence), the Partnerships for Older People Projects (POPP) programme is intended to provide early intervention.
2.34 The POPPs grant provided ring-fenced funding (£20m in 2006/07 and £40m in 2007/08) for councils to establish local projects in partnership with older people, primary care trusts and the voluntary, community and independent sector (in total supporting 245 projects in 29 pilot sites). The wider focus on health and well-being has been an increasingly prominent objective of policy set out in the 2005 Green Paper, Independence, well-being and choice^43 , and reinforced in the subsequent White Paper, Our health, our care, our say, in January 2006.^44
2.35 The POPPs initiative is subject to independent evaluation and the final report is not due until October 2008. Interim findings have highlighted the following:
- Compared with non-POPP sites, the POPP pilots are having a significant effect on reducing hospital emergency bed-day use (with estimates that for every £ spent on POPP, £1 will be saved on hospital bed-days).
- Pilot sites are reporting improved access for excluded groups through proactive case finding, greater publicity and links with the voluntary sector.
- Partnerships between statutory organisations and the community and voluntary sectors have improved compared with the situation prior to POPP.
- Pilot sites are reporting improved engagement of older people within steering groups, and in commissioning, recruitment, provision and evaluation processes.
- Older people’s health and well-being needs are becoming better integrated within the wider strategic agenda.^45
2.36 The pilots are providing a diverse range of interventions to promote independence for local older people. Importantly, the projects include many which are concentrating on
repairs can have a central role as part of a wider prevention strategy has been taken up in the Government’s strategy for lifetime homes.^48 The strategy addresses the importance of ‘preventative housing services’ including advice and information, and adaptations and repairs “which prevent health and care crises for individuals”. However, in seeking to improve effectiveness by identifying people most at risk, a new approach to early intervention and prevention is to be piloted using predictive risk modelling developed by the King’s Fund “to accurately identify which people will have a health or care crisis, such as a hospital or care home admission a year before it happens”.^49
2.40 This is extremely ambitious and such a model could have significant application in identifying individuals for preventative services, as well as predicting future population needs. However, the range of possible models discussed by the King’s Fund 50 are relatively blunt instruments in their understanding of social care data. One model, for example, suggests using data on people identified at ‘FACS critical’ as a key predictor of risk, while others focus on people at risk of nursing home admission, or simply use high-cost data as a proxy for need. Given that there are well- documented difficulties with the FACS framework – both in terms of the inconsistencies within and between councils, and in the lack of coherence between FACS and the emerging personalisation agenda^51 – it is arguably inappropriate to use FACS as any objective indicator of need or as the basis for preventive intervention. These ‘high-end’ predictive models would not appear to offer anything to the lower end of prevention and are concerned with stopping people who already have significant social care needs needing more costly interventions. The scope for using this model (or any of its variants) remains to be seen, but there are obvious risks in focusing ‘prevention’ strategies only at the highest level of need, and not also addressing prevention more holistically and further upstream.
Overview of prevention
2.41 The foregoing analysis has explored the meaning of prevention in the social care research literature. It is evident that the concept is highly complex and multi- dimensional. Any judgement about the preventive value of any intervention has to be made in terms of the specific objectives it is trying to achieve, which in turn determine the relevant outcome criteria and cost-effectiveness indicators.
2.42 Much of the debate about prevention has been a professionally dominated one. The factors which have focused interest in the value of prevention have primarily been those concerned with establishing that particular investment can generate longer- term savings for public expenditure. These objectives may coincide with improved outcomes for people needing social care, but this is not axiomatic. Experience in the area of intermediate care has highlighted the tensions which can exist between professional- and managerial-led agendas (maximising hospital throughput) and those concerned with the best interests of people who use services.
2.43 Because of the complexity of interplay between various potential outcomes and of multi-factorial variables, it has been notoriously difficult to attribute cause and effect to preventive interventions, and to demonstrate cost-effectiveness. The discussion on ‘low-level’ interventions has also underlined the central importance of quality of life
dimensions, which often fail to be adequately acknowledged in evaluations and which can be overlooked if the prime concern is with savings within the health and care system. It is against this background that the emerging policy emphasis of personalisation must be located. What distinguishes this development from much of the professional-decision models of prioritisation is the central focus on outcomes and user-defined objectives. We turn now to explore the characteristics of personalisation and the origins of the self-directed support framework which provides its philosophical underpinning.
piloted as a means of offering greater choice, empowerment and freedom. This new system will require a debate about risk management and the balance between protecting people and “enabling them to manage their own risks” , while also putting people “at the centre of assessing their own needs and how those needs can best be met”.
3.6 Thirteen Individual Budget pilot schemes were subsequently established in 2006. Unlike Direct Payments these pilots were able to integrate other funding streams. In addition to social services expenditure on adult social care, potential funding was also available through Supporting People, the Independent Living Fund, the Disabled Facilities Grant, the Integrated Community Equipment Service, and Access to Work. Not all funding streams were being integrated in all 13 sites, and not all sites were covering all adult care groups. At the time of writing (March 2008) the report of the independent evaluation of the Individual Budget pilots is imminent. However, in advance of those findings becoming public, the Government has already committed itself to extending personal budgets. Since the pilots were established it appears that there has been a shift in the commitment to the underlying principles of personalisation, and the value of the evaluation will lie primarily in how it can inform further development by demonstrating which models work best for which groups of people using social care support.
3.7 The White Paper of 2006 ( Our health, our care, our say ) confirmed the objectives of the Green Paper of providing high-quality support to meet people’s aspirations for independence and greater control over their lives, and to shift services into a more personalised model to fit around people’s needs.
3.8 Improving the life chances of disabled people was followed in 2006 by the establishment of the Independent Living Review to develop a strategy for delivering the objectives of independent living. The report of the review in 2008 addressed personalisation, choice and control in the following broad terms: “We will support the transformation of social care to deliver a system which will focus on timely, preventative and high quality personally tailored services. We want everyone – whether they receive state-funded support or fund support themselves – to have maximum control and power over the support services they receive and we will work with local authorities and key partners to help them deliver this.”^54
3.9 Increased personalisation will be promoted through personal budgets and Direct Payments. There is a specific commitment to extending the scope of Direct Payments to people who are currently excluded (people without capacity), and this has been addressed in the Health and Social Care Act 2008.
The origins of self-directed support
3.10 In order to understand the current policy direction and the emphasis on personalisation, it is important to locate this within the wider development of self- directed support and the promotion of independent living. The concept of personalisation which is at the heart of Direct Payments and Individual Budgets has
also been developed through other initiatives, both in the UK and internationally. 55 Lord and Hutchison observed in 2003 that: “A worldwide paradigm shift is occurring in the disability field. Regardless of whether the focus in physical disabilities, learning disabilities or mental health service users, the paradigm shift reflects a move away from institutional services and professional control towards an emphasis on self-determination and community involvement.” 56
3.11 At the heart of some of this development, in addition to a core emphasis on person- centred planning and individualised response, has been a parallel focus on the idea of individualised funding, or money provided directly to the person. In reviewing ten such initiatives in Canada, the US and Australia, Lord and Hutchison found that all shared explicit underlying values and principles – typically a commitment to self- determination and community participation and inclusion. The review highlighted the importance of recognising that the budget is only one element of individualisation, and that too much concern with the funding mechanisms without sufficient attention to other elements such as network building and person-centred planning “could create a false impression that having money alone would solve serious disability issues”. However, individualised support and funding together with a focus on building community capacity and network building “can be seen as critical elements of the new paradigm of disability and community”.^57
3.12 Direct Payments have existed in the UK since April 1997. The Community Care (Direct Payments) Act of 1996 gave councils powers to make cash payments, or to provide a combination of services and cash, instead of local authority commissioned services for disabled people who were willing and able to take responsibility for their own support arrangements. Initially Direct Payments were available only to eligible people aged between 18 and 65, but further extension made them available to people aged over 65 from February 2000, and to carers, parents of disabled children and to young people in transition (16- and 17-year-olds) from April 2001.
3.13 Take-up of Direct Payments remains relatively low, although it is of growing significance. The latest data indicate that 12,000 more people used Direct Payments in March 2007 compared with the situation a year before (40,600 compared with 32,000). Even so, Direct Payments account for only £2 in every £100 of total gross spending on social care (and 6% of net spending). However, if spending on community services for adults with a physical or sensory disability is considered, direct payments account for more than one fifth of expenditure. 58 Take-up also varies significantly between different councils, and in ways which cannot be explained by differences in socio-demographic factors.
3.14 It is also evident that not everyone who uses social care (or might do so) has equal access to Direct Payments. The latest information comes from a major national survey which found that direct payments were most often provided for people with a physical disability or sensory impairment, compared to other groups, and least commonly to people with a mental health problem. 59 However, as the authors point out, considerable variation between councils underlines the significance of some embracing user-centred care through direct payments, while others continue to lag behind. Despite improvements in take-up of direct payments, the continuing variation between councils, between different parts of the UK, and between service