Personalisation of adult social care – do we have to decide between choice or quality?

Martin Stevens, Research Fellow at the Social Care Workforce Research Unit at King’s, discusses personalisation and the risks associated with an exaggerated concentration on choice in the context of adult social care.

Personalisation of adult social care (and other publicly funded services) is still an important goal of government policy and local practice. The claims about the benefits of personalisation are well known—choice and control produces better outcomes and is achieved primarily through an up-front allocation of resources to individuals to make decisions about what to purchase and from whom. ‘Think Local Act Personal’ is a sector partnership of voluntary and statutory organisations, which offers advice and information to councils and professionals in implementing personalisation and is a leading proponent of personalisation, particularly in relation to personal budgets.

The roots of personalisation lie in two strands of philosophical and political thought. First is a view that markets are the best way (if not the only way) of providing services. Second is an emancipatory perspective that identified professionally organised services as oppressive and restrictive, leading to a campaign for greater control. This was led by young disabled people.

John Clarke and his colleagues (2008) have raised three concerns over the value of emphasising choice in this context. First, they argued that focusing on increasing choice favours those with the best ability to exercise it (or with the most supportive networks), thus increasing inequality. Second, they maintained that a focus on choice ignores the complexities of power relationships and fails to recognise the public interest in decisions about public services, such as social care. Findings from the IBSEN study (evaluating the pilot individual budget sites) also supported this critique (see Stevens et al. 2011). While there has been great emphasis on increasing choice of provider within a market, this has possibly been at the expense of exploring the best ways to support people to exercise choice and control over their lives. Similarly, less attention has been paid to ensuring the quality of the support provided. Some commentators have therefore questioned the extent to which personalised funding should be the sole means of arranging services, arguing for the need for maintaining some collective provision (see Needham 2012).

This is not to argue against choice, but to caution against the adoption of choice as a goal in itself, separate from other aims of improving outcomes. It can be argued that personalisation policy has become focused on the means of choosing services, and how money is spent, rather than the kinds of support that is valued, although Think Local Act Personal has produced some guidance for people using direct payments to employ personal assistants.

The financial recession has led to several years of public sector spending restraint, which has coincided with a strengthening political will towards marketisation. This has become a dominant driver of personalisation. It has exacerbated the emphasis of choice over quality. In practice terms, this presents difficulties for social workers and others working to support people making choices about the use of public money allocated for their support, as there are fewer ‘levers’ to pull in terms of ensuring quality of service and outcomes. Where abuse is suspected, a safeguarding team can investigate and attempt to improve the quality of support if necessary, but this is a safety net approach. It is interesting that two recent evaluations have not emphasised the value of choice in contributing to outcomes, but have highlighted the importance of quality of support (these evaluations were launched at a joint King’s College London and Ipsos MORI event on 25 September (Personalised support services for disabled people: What can we learn?).

Great emphasis has also been placed on the support that disabled people and carers may need to use direct payments. User-led organisations can provide this support and are valued where this happens—see Think Local Act Personal’s guidance document: Best practice in direct payments support – a guide for commissioners. However, there is also a case to be made for professional support for this kind of decision making. Good relationships with individual disabled or older people may be one way of ensuring the availability of advice about the best kinds of support and how to assess the quality of care. Similarly, engagement with organisations of disabled or older people may help to identify concerns and lead to policy and practice questions being addressed. While this support does not necessarily need to be provided by social workers, their value as people trained in understanding the significance of major psycho-social decisions and (hopefully) a good knowledge of the different kinds of support, should not be dismissed.

Dr Stevens is Research Fellow at the Social Care Workforce Research Unit at King’s College London. Recent work includes the Jobs First Evaluation (launched at the 25 September event mentioned in this post). Current work includes Models of safeguarding: a study comparing specialist and non-specialist safeguarding teams for adults.

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Clarke, J., Newman, J. and Westmarland, L. (2008) The antagonisms of choice: New Labour and the reform of public services, Social Policy and Society, 7: 2, 245–53.

Needham, C. (2013) Personalized commissioning, public spaces: the limits of the market in English social care services, BMC Health Services Research 13 (Suppl 1): S5 9 pages.

Stevens, M., Glendinning, C., Jacobs, S., Moran, N., Challis, D., Manthorpe, J., Fernández, J-L., Jones, K., Knapp, M., Netten, A., Wilberforce, M. (2011) Assessing the role of increasing choice in English social care services, Journal of Social Policy. 40(2), 257–274.


Abuse of vulnerable adults – referrals for investigation up 4% this year

Caroline Norrie, Research Fellow at the Social Care Workforce Research Unit, examines figures published by the Health and Social Care Information Centre on the abuse of vulnerable adults in England in the context of the Models of Safeguarding research project being undertaken at the Unit.

English councils referred 112,000 cases of alleged abuse against vulnerable adults for investigation in 2012-13, a 4 per cent rise (from 108,000 in 2011-12) for the 151 councils which submitted data in both years. This is according to figures just released from the Health and Social Care Information Centre (HSCIC). This provisional report – Abuse of Vulnerable Adults in England 2012-13: Experimental Statisticsfinds the rate of referrals per 100,000 population was highest in the West Midlands (320), North West (300) and London (295) regions in 2012-13.

Safeguarding alerts (which are the initial point at which concerns are raised) have also increased during 2012-13.  A total of 173,000 alerts were recorded by 140 (out of 152) councils. Considering the 117 councils who recorded alerts in both years (comparing 2012-13 provisional data and 2011-12 final data), this is a sharp increase of approximately 19 per cent (rising from 134,000 to 159,000). However figure readers need to take into consideration councils’ different methods of categorising and defining alerts.  In some councils, all concerns received are recorded as referrals and cannot be split up for reporting, making this data complex to interpret.

We don’t know whether this steep rise is due to increased reporting as a result of greater public awareness about adult safeguarding, an actual rise in abuse – or a combination of the two.  From the point of view of public services however, it means more work at a time when resources are being cut.

HSCIC chair Kingsley Manning said the report, ‘plays an important role in laying bare issues affecting some of the most vulnerable in society, the role of our local authorities and also that of the public in alerting councils to cases of alleged abuse.’

A very similar picture to last year is presented with regards to the characteristics of the people alleged to have suffered abuse, alleged perpetrators, locations and forms of abuse.  In 109,000 (of 112,000) cases referred for investigation in 2012-13, the following key information was known:

About the person alleged to have suffered abuse:

  • Just over three in five (61 per cent, or 67,000)1 were aged 65 or over.
  • Half (50 per cent, or 55,000) had a physical disability.
  • Just over three in five (61 per cent, or 66,000)1 were women.

Considering the case details of those 109,000 referrals (noting that an individual referral can contain more than one type, location or perpetrator of alleged abuse):

About the types of alleged abuse

  • Physical abuse was recorded in 39,000 allegations (28 per cent)
  • Neglect was recorded in 37,000 allegations (27 per cent)

About the alleged perpetrators:

  • Social care workers were recorded in 35,000 allegations (31 per cent)
  • A family member was recorded in 25,000 allegations (23 per cent)

About the Location of alleged abuse

  • The vulnerable adult’s own home was recorded in 43,000 allegations (39 per cent)
  • A care home was recorded in 40,000 allegations (36 per cent)

About the Case outcomes

Considering the 86,000 completed referrals where a case conclusion was recorded:

  • 37,000 were either partly or fully substantiated (43 per cent)
  • 26,000 were not substantiated (30 per cent)
  • 23,000 were inconclusive (27 per cent)

HSCIC chair Kingsley Manning noted, ‘This report in many ways makes for uncomfortable reading, not only that thousands of cases of potential abuse against vulnerable adults are being investigated each year, but more particularly that a substantial number are proven to be of substance’.

A final, more detailed AVA Report 2012-13 will be published in March 2014 when post-submission validation checks will have been carried out on the data submitted by councils.

I am currently part of a research team investigating the advantages and disadvantages of different models of adult safeguarding. Our study has been funded by the NIHR School for Social Care Research and continues our long tradition at King’s College London of research on this subject. A key part of our present study will be analysing and comparing the AVA data for six selected councils which use different approaches to organising their adult safeguarding services. As part of this study, we have recently interviewed 24 adult safeguarding managers about how they organise adult safeguarding in their areas.  Comments about the AVA returns made during these interviews include that the AVA returns are valuable in making comparisons between local authorities, but the information is viewed as provisional, given the complexity of data collection.

Some difficulties with the AVA collection are outlined in the HSCIC report. There may be a great deal of under-reporting as the data does not include cases where partner agencies dealing with an allegation do not share the information with the council. The collection only covers abuse perpetrated by others (it does not include self -harm or self-neglect)  – and these issues also need to be addressed when considering the most effective ways to support adults at risk who may decline help or care. Also, a single referral can relate to different types of alleged abuse, locations or perpetrators and may have more than one outcome for the alleged victim and/or alleged perpetrator. It is also important to remember that these figures do not represent the number of adults at risk who have been referred. They relate to individual referrals: the same person may have multiple referrals in a year.

Councils in England submitted data voluntarily to the national Abuse of Vulnerable Adults (AVA) collection in 2009. Since 2010-11, the Minister for Care and Support mandated submission of AVA collections to the HSCIC, and for the 2012-13 period, 151 out of 152 local authorities have complied. This is a major development and one which is enriching our knowledge and helps develop services.

2012-13 is the last year for collection of the AVA return.  Information about adult safeguarding activity will be then be collected through a new Safeguarding Adults Return (SAR). The SAR is one of the outcomes of a review of adult social care data collections.  Many of the same data will be collected, but it will be more focused on outcomes of safeguarding and alert data will no longer be collected.

We look forward to studying the 2013 AVA returns in greater detail – and to making comparisons with the SARs in the future. If you are interested in receiving information about our current study or having a copy of our bibliography covering our other research and publications on adult safeguarding please get in touch.

You can contact Caroline Norrie at King’s here:

  1. Figures have been rounded to the nearest thousand.

Avoiding more Winterbourne Views: What can we learn from history?

Caroline Norrie, Research Fellow at the Social Care Workforce Research Unit at King’s College London, reports from the annual conference of the Social History of Learning Disability (SHLD) research group, which is based at The Open University (OU). The conference was held at the Milton Keynes OU campus on 8 July 2013.

The conference, Avoiding More Winterbourne Views: What can we learn from history?, highlighted the life histories and experiences of people with learning disabilities – whether living in institutions or in the community. Margaret Flynn, author of the Serious Case Review into Winterbourne View was keynote speaker and opened the conference with a presentation about the history of Winterbourne View and lessons learned. Margaret drew attention to the need for commissioning organisations to improve their performance – making better choices of providers and carrying out closer monitoring of contracts. Margaret questioned, for example, why commissioners are involved in building new long stay institutions and paying to keep service users with learning disabilities in them. Margaret also commented on how the individuals managing the private equity firm which ran Winterbourne View (which they regarded as one of their most profitable homes) managed to escape both media investigation and criminal prosecution. Margaret called for the introduction of a new law to make corporate negligence a crime, which could be used to prosecute unscrupulous private care home owners. Margaret also underlined the continuing need for better and customised inspections.

“No going back:  forgotten voices from Prudhoe Hospital”

“No going back: forgotten voices from Prudhoe Hospital”

From Newcastle, Tim Keilty and Kellie Woodley of self advocacy organisation Skills for People, gave a presentation about the production of a book based on residents’ memories of living at Prudhoe Hospital. They discussed the history of the institution (built in 1913 and only closed in 2005) which by the 1960s, housed 1,400 residents. Despite the harsh regime, former resident Kellie Woodley described lighter moments and the satisfaction of resistance, for example lying in wait for a disliked member of staff to enter the room, knowing she had balanced a bucket of water above a door or placing a contraband needle on the chair of another staff member.

Oxfordshire Family Support Network, a small charity run by carers for carers described their Changing Scenes Project, which offers peer to peer support for older families. Nationally, 60% of adults with a learning disability live with family carers. And approximately one-third of adults living in the family home live with carers aged 70 or over (source: Mencap Housing Time Bomb Report, 2002). This presentation consisted of conversations with four older family carers who related their experiences of battling on alone in the past without help, abusive incidents, and in more recent times standing up for their rights to get the services they wanted. One mother celebrated personalisation as a huge breakthrough in providing appropriate care for her family member.

Keeping the discussion in the present day, service user, Angela Still, from Central England, People First, presented the difficulties of community living such as isolation and her experiences of financial abuse by a neighbour. She outlined how, with the help of People First, she had been assigned a case manager, had managed to have her abuser prosecuted, and moved to a new house where she was now happy, safe and secure.

Sue Dumbleton and Jan Walmsley from the OU discussed how another Winterbourne View could be avoided. Sue, drawing on her experiences of being the parent of a young adult who has a learning disability, reflected on ‘what works’ in supporting people with a learning disability to enjoy a safe and productive life of their choosing and the role of personalisation in this.

This conference also included international perspectives with presentations from Norway and Ireland. We learned about the development of services for people with learning disabilities in Norway through the life history of Ruth, who was kept in an institution for 20 years. When Ruth finally moved to living in the community, the same staff from the institution were employed as her carers and she still had to battle to be treated as an individual and not be degraded. It was only when Ruth was given the power to choose her home care provider that she was finally free to live as she wished – “I am no longer angry because now I can decide for myself.” This presentation was given by Bjørn-Eirik Johnsen, Leif Lysvik and Terje Thomsen from Harstad University College.

Rob Hopkins and Joe McGrath

Rob Hopkins and Joe McGrath

From Ireland, Kelly Johnson, Rob Hopkins and Joe McGrath (Clare Inclusive Research Group) gave a talk about the difference between ‘belonging’ and ‘inclusion’ in a small village in County Clare with reference to the life history experiences of Joe McGrath.

Rachel Fyson from the University of Nottingham took the long view and highlighted how abuse is a constant and does not just happen in hospitals and large institutions. She argued more needs to be done to understand and prevent abuse wherever it takes place.

Mabel Cooper (1944-2013)

Mabel Cooper (1944-2013)

This annual conference was dedicated to Mabel Cooper, MA (1944-2013), a long standing member of the SHLD group, who passed away this year. The audience watched a video, shown on BBC2 in 1999, in which Mabel described her life in an institution – and the lasting impact this had on her. Mable left the institution in 1977 and during the 1980s, was Chairperson of Croydon and then London People First and worked with people with learning disabilities supporting others to speak up for themselves. Mabel’s gift for storytelling and her reflective ability meant her life story became famous around the world after it appeared, to great acclaim, in SHLD’s book Forgotten Lives (1997). Mabel’s personal testimony was also put to practical use in her work in schools. Drawing on personal experience, she was able to educate children about the lives of people with learning disabilities. Mabel’s friends Gloria Ferris, Jane Abraham and Dorothy Atkinson spoke movingly, remembering their friendship, including how they first met. “In making sure her story was told, and recorded, Mabel has left an enduring legacy”.

From my own personal viewpoint, working at SCWRU on a project about adult safeguarding, I found this conference particularly useful as it contextualised the history of care for people with learning disabilities, while at the same time raising current issues and debates. Best of all though – and what made this conference highly memorable – was it being characterised by inclusivity and forefronting the voices of people with learning disabilities throughout.

Caroline Norrie is Research Fellow at the Social Care Workforce Research Unit, King’s College London. She is working on: Models of safeguarding: a study comparing specialist and non-specialist safeguarding teams for adults – currently in its fieldwork stage.

Practice into Research

Katie Graham, who recently joined the Social Care Workforce Research Unit at King’s College London, reflects on practice, research and the recent Department of Health conference on Adult Safeguarding.

The connections between practice and research seem pretty obvious in theory given the emphasis in social work training upon becoming ‘research-minded practitioners’. But they are often difficult to realize, with increasing workloads and the pressure of daily practice pressures of risky, even worrying, situations. I started working at the Social Care Workforce Research Unit at the beginning of April after having been a social worker in a specialist adult safeguarding team in a local council.

My transition between practice and research has been a fairly smooth one – particularly once I’d overcome the urge to case note each conversation I had! I am working on the ‘Models of Safeguarding’ project, so this research is directly connected to my recent practice. Last week I attended a Department of Health organised conference ‘Adult Safeguarding: A Return to Practice’ which further helped to ease my transition as it was a conference specifically designed to make research available to practitioners. The event was an interesting mix of policy discussion related to the Care and Support Bill and practice guidance from ADASS. There was a discussion of the neglected role of housing in adult safeguarding and practice innovations in the prevention in adult safeguarding. Of great relevance to the Unit was a discussion by representatives from SENSE about the complexity of safeguarding alerts with adults who may be perceived to be ‘at risk’ but where no intentional harm is evident. The speakers from SENSE described their approach to safeguarding when working with deafblind people who communicate through touch. I will be talking more to the Unit’s Phd student, Peter Simcock, about this – since this topic is the focus of his doctoral research. A final presentation from Dr David Orr related to his research around self-neglect.

Mike Briggs from ADASS (2013) outlined its new ‘top tips’ for adult safeguarding. His presentation contained vital information for any practitioner and researcher in this area. However, what was striking was how policy statements hide the complexity of daily work in social care, whether working as a social worker, personal assistant (independently for an employer) or support worker in a large organisation. The potential to place adult safeguarding on a firmer statutory footing with the Care and Support Bill (2012) is welcome, however it will be its eventual guidance that will likely be most useful to social workers’ daily decision-making. Jeremy Hunt, the Secretary of State for Health, has said of adult safeguarding that councils have been “ticking the box, but missing the point” (in ADASS 2013: 3) suggesting an over-reliance on processes rather than outcomes for people.  Rigid constructions of ‘abuse’ and ‘harm’ and a person ‘at risk’ may be as damaging as inaction but, as a recent article by Angie Ash (in the British Journal of Social Work) suggests, social workers often do not take action.

The conference emphasized that adult safeguarding is ‘everybody’s business’. However, from my own perspective finding my feet in a research environment, it is also clear to me that research and practice are not (and should not be) far apart in this area of work. It is through dialogues (and the potential of action research –  see Joan Rapaport’s earlier blog), including the experiences of people perceived to be ‘at risk of harm’, that we can develop interventions and gain the skills and confidence to effectively minimise the risk of harm. Social workers have a strong tradition of respecting people’s rights to self-determination but also their rights to protection. The Models of Safeguarding project, investigating how different councils organise their safeguarding adults responsibilities, is engaging with these complexities.  I think that this resonates with everyday social work practice.

Katie Graham is Research Associate at the Social Care Workforce Research Unit.