Personal Budgets for adult social care and support: are homeless people eligible?

Posted on by

With the Care Bill entering the report stage in the House of Commons shortly, Michelle Cornes urges us to take part in the debate over what constitutes eligible need in relation to adult social care and support. Dr Cornes is Senior Research Fellow at the Social Care Workforce Research Unit (SCWRU) at King’s College London and recently completed a major ESRC-funded project examining Multiple Exclusion Homelessness. Her work forms part of the Homelessness Research Programme at SCWRU.

As funding for Supporting People services continues to shrink (see Patrick Butler’s article in The Guardian, 12 February 2014) it is timely to revisit the question as to whether homeless people are eligible for publicly funded social care support (e.g. personal budgets secured through adult social care) or personal health budgets. The Care Bill currently going through Parliament heralds some positive changes that may serve to open the door to this funding stream which has, de facto, mainly been closed to homeless people. As the law currently stands ‘homeless people’ are not eligible for support (though ‘homeless people’ with mental health, physical health, and drug and alcohol problems may be). The Care Bill will remove ‘eligible’ and ‘ineligible’ groups so that any adult with any level of need will have a right to an assessment (Department of Health 2013: 1.9).

Under the existing guidance, the purpose of a community care assessment is to assess need in the round. The guidance is clear that needs relating to social inclusion and participation should be seen as just as important as needs relating to personal care (Department of Health 2010: 61). It is perhaps worth noting that housing related support can be purchased using a personal budget from adult social care. In Scotland, 11% of direct payments and self-directed support packages in 2012 encompassed this element (Rosengard et al. 2011).

Once a community care assessment has been carried out, a decision must then be taken by the local authority (on a case-by-case basis) about whether the needs identified are eligible needs. The eligibility framework is graded into four bands which describe the seriousness of the risk to independence or well-being (Department of Health 2010: 54). This considers issues such as the ability to carry out personal care or domestic routines, whether vital involvement in work, education or learning can be sustained and if vital family and other social roles and responsibilities can be undertaken. Risks are banded as low, moderate, substantial and critical with many councils only meeting those needs identified as substantial or above.

Making decisions about which banding to apply and ultimately, who is eligible for a ‘personal budget’ is open to professional interpretation. With increasing austerity, the regulator has taken issue with those local authorities identified as being too restrictive. For example, Michael Mandelstam highlighted a recent case in which a local authority visited a woman at home, assessed her as managing her own personal care and closed the case—having first recorded that she was unkempt, her knickers were around her knees, there was evidence of faeces on the floor and she was not taking her medication (2013: 123).

Evidence from the Multiple Exclusion Homelessness Research Programme (Cornes et al. 2011) and other studies suggests that people who are homeless fare particularly badly in getting their needs banded correctly, often struggling to access an assessment at all. There is evidence that homelessness is written off as ‘lifestyle choice’ or as a housing responsibility, with the ‘substantial’ and ‘critical’ risks posed to well-being ignored or overlooked. The notion that homelessness poses mostly low to moderate risks to well-being is most clearly challenged by the startling statistic that the average age of death of a homeless person is 47 (43 for a homeless woman) as compared to 77 for the general population. The Care Bill (page 2) makes explicit the need to challenge discriminatory practices so that decisions about the individual are made having regard to all the individual’s circumstances and are not based only on the individual’s age or appearance or aspect of the individual’s behaviour which might lead others to make unjustified assumptions.

The problems with the way eligibility criteria are being applied are acknowledged by the Coalition Government. The Care Bill will introduce a national minimum threshold for adult care and support and there are plans to replace the current ‘Fair Access to Care’ (FACS) eligibility criteria in 2015. A new description of what is eligible need will be put forward for consultation in 2014 and a discussion document is already in the public domain (Department of Health 2013). I would urge all those working in the homelessness sector and those interested in challenging social exclusion to respond to this consultation. Without doing so there is the danger that homeless people will continue to be denied the support they are entitled to and, given what we know is happening to Supporting People services, possibly robbed of the little support many already have.

Dr Michelle Cornes is Senior Research Fellow at the Social Care Workforce Research Unit. She recently completed a major study on Multiple Exclusion Homelessness funded by the ESRC. For work on homelessness at the Social Care Workforce Research Unit at King’s see our Homelessness Research Programme pages.

The Social Care Workforce Research Unit is part of the King’s Policy Institute (KPI) at King’s College London. The Institute is involved in the translation of academic research at King’s to the benefit of policy and practice.

References

Butler, P. (2014) ‘If supported housing is cut, we will see more rough sleeping and more crime’. The Guardian, 12 February 2014.

Cornes, M., Joly, L, Manthorpe, J., O’Halloran, S., and Smythe, R. (2011) ‘Working together to address Multiple Exclusion Homelessness’, Social Policy and Society, 10(4): 513-522.

Department of Health (2010) ‘Prioritising need in the context of Putting People First: a whole system approach to eligibility for social care – guidance on eligibility criteria for adult social care, England 2010’, London: Department of Health.

Department of Health (2013) ‘Draft national minimum eligibility threshold for adult care and support. A discussion document’, London: Department of Health

Mandelstam, M. (2013) Safeguarding Adults and the Law. London: Jessica Kingsley.

Rosengard, A., Ridley, J. & Manthorpe, J. (2013) ‘Housing support and personalisation: observations from the Scottish Self-Directed Support test sites’, Housing, Care and Support, 16(3/4): 136-144.

My House or My Home? The challenges of ageing and housing

Posted on by
Joan Rapaport

by Joan Rapaport

Last week (6 February) the Social Care Workforce Research Unit hosted its sixth joint annual conference on the theme of older people. It is organised jointly with Age UK London and Making Research Count and, this year, supported by The British Society for Gerontology. The topic: housing and older people. Speakers included Jill Manthorpe, Vic Rayner, Jeremy Porteus, Simon Evans, Maureen Crane, Louise Joly and Maria Brenton. Joan Rapaport reports.

 

Why the interest in older people’s housing?

Professor Jill Manthorpe (Director, Social Care Workforce Research Unit) highlighted increasing interest in the role of housing and environment on health and wellbeing in later life. She pointed to the sudden (re)discovery of the triangle of health, housing and care contributing to quality later life. Poor housing and environments undermine the potential benefits of social care and technological advances. Depressing environments may foster depression and inaccessible or hazardous environments compound isolation. We have long known that dampness, mould and cold are bad for health; recent research also suggests that loneliness can be as bad as smoking on health. Whilst some commentators accuse older people of stealing the pensions of their younger counterparts and draining health resources, and denying them access to the housing ladder, the idea of a ‘jilted generation’ has scant evidence. If anyone had been jilted it was the generations who were promised ‘homes fit for heroes’ many of whom who spent their old age in cold, disabling and poor housing.

Jeremy Porteus

Jeremy Porteus

Drawing on a recent personal experience, Jeremy Porteus (Director, Housing, Learning and Improvement Network (LIN)) highlighted the problems people face when planning for old age. There is no central ‘Ideal Home Exhibition’ point from which to make the perfect choices, there are psychological barriers to facing the future and a decision may have to be made in a crisis. Although the government is greatly concerned about the ageing population, the Select Committee on Public Service and Demographic Change (Lord Filkin, 2013) found that the housing market is delivering much less specialist housing for older people than is required and that national and local government and housing associations urgently need to make plans. Jeremy commented that if we are to build better homes then we also need to shape communities: making this more just a question of supply and demand.

Jeremy described the benefits deriving from purpose built projects and the emerging evidence base for positive outcomes. As just one example, people who were lonely with high needs had moved into Extra Care accommodation that had been funded by the Department of Health (DH). Within six months to a year many had experienced improvements in their wellbeing, ability to self-care and autonomy, creating savings in health and social care budgets. Extra Care projects are provided in a wide variety of ways including community led housing, cooperatives and cohousing as well as sheltered housing, retirement villages, almshouses and homesharing. Jeremy exhorted conference participants to join Housing LIN to keep abreast of strategic developments and opportunities and service innovations. Housing LIN is the leading ‘learning lab’ for a growing integrated network of housing, health and social care professionals in England involved in planning. As such, it is at the forefront of policy, research and practice developments and is a member of the Prime Minister’s The Dementia Challenge health and care champion group.

Vic Rayner (Chief Executive, SITRA) questioned the source of the ‘drain’ perceptions of older people in society. The evidence shows that contrary to these ‘doom and gloom’ predictions, people living longer lives are an asset to their communities and families, many working as volunteers, providing neighbourly support and helping with childcare responsibilities.

Vic Rayner

Vic Rayner

And the pictures of older people being drains on taxpayers are exaggerated, she observed. Close analysis of available data illustrates that the average annual unit cost of sheltered accommodation is just £311.10 – an amazing bargain! An investment of £198.20 in sheltered accommodation yields a saving of £646.90; of £32.40 in sheltered accommodation for older people with higher needs, savings of £123.40 and older people receiving floating support £97.3 and £628 respectively. Service user objectives of having access to assistive technology, security of tenure, personal security, greater autonomy and contact with family and friends are largely met. Yet supported provision for older people when compared to other population groups, is meager and may now be additionally under threat from local authority budgetary constraints.

‘On the Pulse’ case studies show how good practices in housing and health delivery can achieve good outcomes in:

  • Transferable care packages from housing to hospital and vice versa
  • Supporting re-ablement through telecare
  • Creating solution orientated partnerships across traditional health, social care and housing sectors

Vic highlighted the importance of commissioners’ valuing what matters to service users and including in their audits ‘soft’ and ‘hard’ outcomes, rather than focusing on a set of outputs defined by funders. She endorsed views that deeply ingrained attitudes towards older people needed to change.

Dr Maureen Crane and Dr Louise Joly (Honorary Senior Research Fellow and Research Fellow respectively at the Social Care Workforce Research Unit) drew on their current research on the housing and support needs of older homeless people.

Louise Joly

Louise Joly

Emerging findings from this unique study investigating what has happened to homeless people since they were rehoused five years ago demonstrate the potential problems of withdrawing support. Their research suggests that homelessness amongst people aged over 50 years is increasing, although no accurate figures are available. Homelessness in later life happens for a variety of reasons, such as breakdown in long-term marital or partnership relationships, death of a parent or spouse as well as mental health and substance misuse problems. Some people have poor budgetary skills and become evicted from the former family home. Some have literacy difficulties. While homelessness can be short term, so far nearly half of their research sample had been homeless for more than five years before being rehoused.

In this study, participants were first interviewed six months after they had been rehoused. Most, by far, not surprisingly, were glad to have been rehoused, regarded their accommodation as ‘home’, valued their privacy and control, and felt safe and comfortable. However, almost half were in debt. Significantly, those in sheltered accommodation were less likely to be worried or to mention they felt depressed.

Maureen Crane

Maureen Crane

Five years on about a third were still in their original accommodation. Of the minority who had moved, some had changed to live in more supported accommodation. Of those in their original accommodation, case examples highlighted struggles that had increased once their support workers had been withdrawn. These people were living impoverished, isolated lives. Unrealistically, some with health problems were being required to look for work. Maureen had been unable to interview one individual, in a great state of despair about her finances, until she had helped her to complete an application for welfare benefits. Some of the questions were difficult to understand. The form was 57 pages long and had to be printed: for this the internet café was the only option. The individual, who had relied on friends for money for two months, had to pay £8 from her benefits’ for her application to be printed!

This research is indicating that many older homeless people want permanent accommodation but many require supported or specialist living arrangements. The support needs of homeless people can fluctuate once rehoused and some do not seek help when faced with difficulties. There is currently a lobbying vacuum following the demise of the UK Coalition on Older Homelessness in 2010. Maureen and Louise highlighted the need for a new campaigning group to raise awareness of the particular needs of older homeless people.

Next to present, Dr Simon Evans (Senior Research Fellow, Institute of Health and Society, University of Worcester) asked what Extra Care housing offered older people? Drawing on emerging findings from the ASSET research project (funded by NIHR School for Social Care Research), Simon explained that Extra Care housing covers units for rent, purchase and includes some retirement villages. Extra Care is typically characterized by having facilities that enable social interaction, activities, outside support and the ability to buy in flexible care packages. The model provides many opportunities to meet the diverse needs and circumstances of older people. For example, the characteristics and needs of residents are wide ranging. Schemes may rely on multiple funding sources, multiple partners and multiple commissioning agencies. There is a range of financial and legal considerations such as for rent, or purchase, and charges for service, support and/or care packages. There are many types of building options such as ‘top of the market’ facilities, specific age friendly designed complexes, or converted council tower blocks. The literature on social care and support in housing for older people is meager.

When planning for their ‘ideal home’ consumers may be faced with differing local authority arrangements, the effects of welfare reforms and budgetary constraints, new models of commissioning and different approaches regarding levels of need. Simon explained that agreement on priorities and tendering arrangements with local authorities preoccupy commissioners. Key factors regarding the commissioning of social care in housing include the relationship between the housing and care provider, the building type, layout and location, the facilities on offer, tenure and letting policy and the mix of care needs required by the residents. However, ideas about what facilities are wanted by people with high needs are changing. As one example, meals and restaurants on site are proving popular but they may not meet everyone’s preferences.

Despite these complications, Simon ended by highlighting some of the benefits of extra housing such as:

  • Serving as community hubs for services
  • Supporting couples to stay together (in contrast to traditional models of residential care)
  • Promoting independence
  • Potential for saving money when compared with the costs of care homes.

Concluding the day, Maria Brenton (Project Consultant to Older Women’s Cohousing Company) outlined the concept of cohousing: which essentially aims to combine personal autonomy with community in old age. Maria explained that there are a small number of cohousing schemes emerging in England where people are coming together with the intention of living in a community and a commitment to mutual support. They share values and each agrees to share responsibility for the group as a whole. Each ‘cohousee’ has her or his own accommodation and own front door. The model is well established on the continent but is starting to gain some momentum here.

Maria Brenton, Jill Manthorpe and Simon Evans

Maria Brenton, Jill Manthorpe and Simon Evans

Maria highlighted the potential strengths of cohousing particularly in respect of combatting loneliness ‘which is probably a killer’. As people come together to design, build, develop and manage the project, they get to know each other well. Cohousing offers the prospect of good social contact, opportunities to share skills and the benefits of old fashioned communities with help at hand right next door.

In the UK 14 schemes are in the pipeline. The scheme she is involved in ‘OWCH’ (Older Women’s Housing Cooperative) is likely to be the first of its kind in the country. However, the model is very new to commissioners and cohousing pioneers face many challenges. A shift in perspectives is required.

For social workers and social care practitioners there were several key messages from the day

  • Loneliness is a potential killer – it is important to consider when thinking about outcomes. The contribution of housing and the built environment to contributing to loneliness should be assessed and addressed.
  • Attitudes about ageing and older people need to change and social work can play its part in this by working with older people and their organisations.
  • Extra Care is often cost effective and outcomes are often good; social workers should be familiar with what is on offer and its opportunities.
  • Not providing Extra Care may cost the public purse more so local investment in it could be supported. As well as providing construction jobs, Extra Care offers local work.
  • There is wide variety of supported housing schemes and social workers need a local ‘map’ to know what people might consider or should be confident that there are local information and advice agencies that can provide person-centred services.
  • The potential of older people to design their own schemes has not been realized; social workers can put people in touch with national bodies.
  • The importance of older people engaging in national and local consultations to improve their housing and wellbeing is one that social workers can convey in community development work.

This conference was the 6th annual joint event (CPD certified) held by Making Research Count at the Social Care Workforce Research Unit with Age UK London. This year the conference was supported by the British Society for Gerontology. It was held on 6 February 2014 at Henriette Raphael House, Guy’s Campus, King’s College London.

Dr Joan Rapaport was, until recently, Visiting Research Fellow at the Social Care Workforce Research Unit, King’s College London and is a lay member of the Mental Health Review Tribunal.

Conference photographs: Cliff Chester

For more on the conference (including presentations) go to the Event website.

For your attention:                                                                                                            Gordon Deuchars, Age UK London, stated that the Mayor of London had issued a Public Consultation on a New London Housing Strategy. This also concerns housing for older people. The consultation ends on 17.2.14. Please contribute to this consultation: www.london.gov.uk/priorities/housing-land/consultations/draft-london-housing-strategy  

Is it time to have an ideal home exhibition for the retirement housing sector?

Posted on by
Jeremy Porteus

Jeremy Porteus

Next week sees the 6th Social Care Workforce Research Unit annual joint conference, presented with Making Research Count and Age UK London. This year’s topic: My house or my home? The challenges of ageing and housing. Here, Jeremy Porteus, Director of the Housing Learning and Improvement Network and one of the speakers at the conference, questions whether we pay enough attention to quality and older people’s preferences when we build retirement housing.

The idea might seem vaguely frivolous when the attributes of high-quality specialist housing for older people include such prosaic but vital considerations such as adaptations and access.

But, for all the aspirational frippery that surrounds the annual Earls Court jamboree, it does have the virtue of putting designers, housing developers and builders in touch with their potential clients.

The Ideal Home Show website notes that ‘the main stunning feature of the Ideal Home Show is our fully built show homes’.

Influential documents such as ‘Lifetime Homes, Lifetime Neighbourhoods’ and both the ’HAPPI‘ reports have been important contributions in raising the profile of specialist housing and emphasising quality.

However, so far, much of the resulting discussion has been about quantity and demographic challenges, and virtually exclusively within professional circles. While this has been necessary it is not ideal.

We need to square up to the challenges and move the debate on so that it focuses even more on quality and, most importantly, shapes a conversation that includes the customers—older people.

By engaging with consumers and potential consumers, developers, construction companies, architects and housing, social care and planning professionals can redress the continuing British aversion to specialist retirement communities.

Market research, for example Demos’ recent thinkpiece, shows that well over half of those over 65 actually want to downsize, with around a quarter interested in a retirement property.

We all need to be talking to those ‘interested’ in a retirement property and those older people who want to downsize, but cannot see themselves in a retirement property.

This dialogue needs to highlight the best of specialist housing and the quality and design aspirations set out in projects such as HAPPI. However, it must also involve professionals and the sector listening to what older people want. What I have called a ‘living lab’.

The danger is that one day society will wake up to the fact that we need tens of thousands of retirement housing units. In our rush to meet that demand we may well repeat the mistakes of the post-war housing developments, including those that can be seen in some of the less desirable sheltered housing built in the 1960s and 1970s.

There was much to admire about the scale of ambition in the housing programmes of the three decades after 1945.

We need to match that ambition, but also capture the aspirations of older people by asking them just what would be their ideal home?

Jeremy Porteus is Director of the Housing Learning and Improvement Network and Chair of the Homes and Communities Agency’s Vulnerable and Older People Advisory Group. He speaks at the conference, My house or my home? The challenges of ageing or housing on 6 February. A handful of places are still available. Twitter hashtag for the conference #olderpeople6

Follow Jeremy on Twitter @HousingLIN

Follow the Social Care Workforce Research Unit on Twitter @scwru

Dementia: cure, care and causes

Posted on by
Jill Manthorpe

Jill Manthorpe

At year’s end, and following on from the recent meeting of the All-Party Parliamentary Group on Dementia and the G8 Dementia Summit, Professor Jill Manthorpe, Director of the Social Care Workforce Research Unit, considers the state of play in dementia research.

Preventing dementia—what an optimistic title for researchers to address. Everyone is interested. So, not surprisingly, the recent All-Party Parliamentary Group on Dementia held on 27 November 2013 heard that one way to do this is to invest in research. Optimism can be catching and the dementia scientific research community optimistically now takes an historical approach by drawing parallels with the linear developments of cancer. The story goes that cancer was rarely ‘named’ as a disease until the 1970s when mass investment in cures for cancer and greater understanding of its causes were assembled in the ‘war on cancer’. The same may now be possible for dementia—or so it seems.

Professor David Smith, University of Oxford, spoke of the myths around dementia—it’s normal ageing or it’s in the genes. But the key for him are environmental risk factors, especially ones that may be modified. These include length of education, high blood pressure in mid-life, lack of exercise, obesity and so on. But proving that these can be modified and can then prevent dementia—well, that needs research. As such risk factors also are risk factors for heart disease that’s good too. Deaths from heart disease are declining so, historically, optimism is contagious. Some of the evidence for this is recent and local—which is not always the quality of evidence one wants.

The research community has had to be nimble in responding to one recent study that counters notions of a ‘tsunami’ of dementia, with its associated fall-out (to mix metaphors) of imminent risk of bankrupting nations. This is the study of the prevalence of dementia which suggests it is on the decline or that numbers predicted were rather pessimistic: Fiona Matthews and colleagues’ study in The Lancet suggests that there are and will be fewer cases of dementia than were being predicted, possible because risk factors have been modified.

So there is hope for prevention—especially as their study reflects findings elsewhere.

Professor Smith called for more research with people who have not got dementia or who have mild cognitive impairment, arguing that such studies may be really relevant to prevention or the slowing down of cognitive decline. But this needs funding and he proposed that the balance of existing funding needs to change to funding prevention research. And this approach needs to focus on what might be modified. Professor Smith thinks that risk factor work could make a big difference—not by curing Alzheimer’s disease, but by preventing some of it. Some of the most popular of Britain’s newspapers would have to revise their notions that cures are just round the corner as a consequence.

Neurologist Professor Nick Fox (UCL) pointed out that dementia knows no national boundaries and affects the population pretty broadly. Like Professor Smith he spoke of his mother’s dementia. Like Professor Smith he also talked of dementia coming out ‘of the closet’. Naming it more specifically, e.g. by type, he thinks is also helpful so that targeted treatment might be developed for the specific form of the disease. This could go hand in hand with prevention to diffuse the ‘demographic time bomb’. But there is a problem: trials are failing—research needs to ‘try better’. Did it do ‘too little’ and with people ’too late’? He argued that drawing a parallel with HIV research could give cause for optimism. Or, in another analogy, is the focus on current dementia research with people who have already got dementia similar to doing research on cancer with people with cancer who are in a hospice? But new research on rare dementia, on genetics, on people with very early brain scan suggestions of change—all these are underway, and, again, promising.

People living with dementia at the moment also need to benefit from research, added Dr Alison Cook from the Alzheimer’s Society. She drew attention to the recent BMJ articles on strategies to promote the mental health of carers of people with dementia (SMART) by Livingston and colleagues and the economic evaluation by Knapp and the same colleagues.

If these had been drug treatments they would have been called a ‘breakthrough’ in the media, she claimed. They are hugely important studies—manualised interventions (for the curious, that means that what to do is written in a book or manual)—that really make a difference. In her view, the language around dementia care also needs to change and interventions such as arts therapy (or what might be called pleasant activities) should be put into practice when they are proved to be effective.

Dr Cook spoke of the roles of the Alzheimer’s Society in involving people with dementia and their carers in research at all levels. This was done to help set the agenda for the G8 Summit. The Alzheimer’s Society seeks to triple research funding – hoping, for example, to look at how drugs used for one condition can be useful in another, such as dementia. The Alzheimer’s Society wants also to see more ‘excitement’ around dementia research and to ensure that the momentum of the G8 summit is not lost. Baroness Sally Greengross, Chair of the APPG, added that more attention should be paid to developments around design and environment as well as encouraging the public to volunteer to take part in research.

Hazel Blears MP is one of the Vice-Chairs of the APPG and has personal, professional and political interest in dementia. She had just raised a Prime Minister’s Question on dementia, and a parliamentary debate took place on 28 November.

She had noted a real change in recognition of dementia—in no small way due to the Prime Minister whose interest, she acknowledged, galvanises the ‘system’ in politics. Hazel Blears also talked of the importance of research on care quality as well as cure—this too needs to include prevention.

Interestingly, in her focus on care she pointed to the importance of evidence for service commissioners, so that they knew (through a sort of possible kitemark system) what works. In her view the situation of homecare workers was similarly ‘incredibly important’. The G8 Summit was providing the opportunity for global commitments but Hazel Blears also talked of local community developments, such as Salford’s Dementia Action Alliance, for instance, that was involving a private taxi firm and training its drivers about good customer care for passengers with dementia. Similarly, her constituency office had looked at itself—its signage, correspondence style and approach, access and so on, as well as the need to be warm and friendly. She ended by pointing to the importance of such local as well as high level initiatives.

MP for Bridgend, Madeleine Moon, a former service manager whose husband has Pick’s Disease, spoke of the enormity of the cuts to local authority budgets and their impact on care packages—leading to minimal ‘wash, dress, feed’ care routines.

Cross-bencher peer Lord Walton spoke of the early scientific work on dementia and Alzheimer’s disease. As someone aged 92 he wondered if forgetting the occasional name was mild cognitive impairment and enquired why B12 vitamins seem to work for people with raised levels of homocysteine.

Other questions in the APPG meeting covered involving people in producing evidence and dissemination; whether homocysteine testing should be routine; the role of advocacy; planning restrictions; advice for ‘middle age kids’; and, whether UK research could really say it is leading the world? (Answer: probably not, but some is excellent. So, for example, USA has a national prevention plan, but Matthews et al.’s Lancet study is terrific.) Professor Fox commented that dementia research has grown, but capacity still needs to be built (otherwise what he described as a Battle of Britain syndrome may be developing where some people/pilots are doing too many sorties, with inadequate equipment, etc.).

Lastly psychologist Lindsay Royan spoke of the lack of support for frontline dementia care workers—which justified my presence there. We left the meeting better informed, possibly more curious about research, but not completely optimistic that research had cures round the corner. And I went back to the office to read the studies mentioned and their commentaries (see, for example, Laakkonen & Pitkälä) more closely.

Jill Manthorpe is Professor of Social Work at King’s College London, Director of the Social Care Workforce Research Unit, and Associate Director of the NIHR School for Social Care Research. Her extensive work on the topic of dementia includes EVIDEM (examining the impact of the Mental Capacity Act 2005 in relation to dementia) and a new study considering dementia in relation to the homeless population.

Follow the Social Care Workforce Research Unit on Twitter @scwru

References

Laakkonen, M.-L. & Pitkälä, K. (2013) ‘Supporting people who care for adults with dementia’, BMJ, 347:f6691. 

Livingston, G., Barber, J., Rapaport, P., Knapp, M., Griffin, M., King, D., Livingston, D., Mummery, C., Walker, Z., Hoe, J., Sampson, E.L. & Cooper, C. (2013) ‘Clinical effectiveness of a manual based coping strategy programme (START, STrAtegies for RelaTives) in promoting the mental health of carers of family members with dementia: pragmatic randomised controlled trial’, BMJ, 347:f6276.

Knapp, M., King, D., Romeo, R., Schehl, B., Barber, J., Griffin, M., Rapaport, P., Livingston, D., Mummery, C., Walker, Z., Hoe, J., Sampson, E.L., Cooper, C. & Livingston, G. (2013) ‘Cost effectiveness of a manual based coping strategy programme in promoting the mental health of family carers of people with dementia (the START (STrAtegies for RelaTives) study): a pragmatic randomised controlled trial’, BMJ, 347:f6342.

Matthews, F.E., Arthur, A., Barnes, L.E., Bond, J., Jagger, C., Robinson, L. & Brayne, C. (2013) ‘A two-decade comparison of prevalence of dementia in individuals aged 65 years and older from three geographical areas of England: results of the Cognitive Function and Ageing Study I and II’, The Lancet, 382(9902): 1405-1412.

Another transition in the NHS – another difficulty in recruiting people to take part in research?

Posted on by
Nathan Davies

by Nathan Davies

Nathan Davies is a PhD student based within the Research Department of Primary Care and Population Health at University College London (UCL). He is working on a palliative care study called IMPACT and here reflects on the difficulties of recruiting general practitioners for the project in light of the changes at the National Health Service (NHS) in England.

IMPACT is a European study working across five different countries: England, Germany, Italy, the Netherlands and Norway. The aim is to improve the organisation of palliative care for people with dementia and/or cancer. In England the project is led by Professor Steve Iliffe from UCL working in collaboration with Professor Sam Ahmedzhai at the University of Sheffield, and Professor Jill Manthorpe from the Social Care Workforce Research Unit at King’s College London. As a researcher on this project I have been part-responsible for the recruitment of various organisations and services to participate in England at a time of massive upheaval and change. What we found was surprising to some extent; however, with hindsight it was not.

I work in a Primary Care research department with strong links to doctors and medical students interested in becoming general practitioners (GPs), yet despite this, our biggest headache in recruitment was in relation to general practice. Why is this? We are not one hundred percent sure and I really don’t think we have the answers about how to improve this; however, I can share some of the difficulties that we encountered. There are several possible reasons, which tend to demonstrate the huge pressures that our GPs are facing at the moment:

Time

GPs have so little time to see their patients, with us all wanting a piece of our GP’s valuable time and often wanting it now. Our GP services are so stretched that we find that fewer and fewer GPs seem to be able to afford the time to do additional work such as research and some struggle to make a home visit as often as would have been expected a few years back. Initiatives requiring GP surgeries to be open later in the evening and seven days a week may increase this sense of busyness. With the new role that some GPs are taking on within Clinical Commissioning Groups they are also having more of their time taken up with this. So when a researcher arrives in a health centre with a new research project, which also demands a piece of their time, then it is not such a surprise they are not quite so able to donate some of their time to work with researchers, despite being enthusiastic about research.

Incentives

Our Primary Care system in the UK rests on a basis of incentives, for example, the Quality and Outcomes Framework (QOF) points system. However, in our project we could not offer very large numbers of points or substantial financial inducements such as these. What we could offer was €1000 per site with additional service support costs, together with hopefully a valuable learning experience which could potentially help improve the organisation and patient service, but this was still not enough. Reflecting upon our attempts I think the closest we came to recruiting GPs was when we were discussing introducing a Locally Enhanced Service, which is again an incentive based system.

Taboo and stigmatization

Within the general public death is still very much a taboo and dementia is still stigmatized. It appeared that many of the GPs that we encountered would rather leave end of life care and palliative care to the specialists. Further to that, many would also rather pass over dementia care to the specialists, such as an old age psychiatrist.

Uncertainty pre–NHS transition

The turmoil over the proposed reorganisation of the NHS before April 2013 caused us huge difficulties. GPs were generally uncertain about what their position would be and therefore questioned whether they could pledge support to a research project which would be an additional commitment.

Confusion post–NHS transition

After April 2013 we still had big problems, indeed probably more problems than before April 2013. Post April 2013 not only were we unable to recruit as many GPs as we needed, we were not even able to arrange meetings or appointments with them to discuss the study. The changes introduced were not a smooth transition. People were left unclear about their roles, responsibilities and how they would go about completing their tasks, balancing a clinical role, commissioning role and for some a research role. Some GPs appeared to be placed in commissioning roles without real choice, and having limited knowledge of that field.

I hope that over the coming months the organisational environment will stabilise and GPs become less anxious, about the new organisations, amended systems, dementia and palliative care. We remain hugely grateful to those GPs and other organisations such as care homes and hospices who have joined this study in these challenging times.

Nathan Davies is a PhD student based within the Research Department of Primary Care and Population Health at University College London.

@ImpactProject1 | @NathanDavies50 | IMPACT website

Compassion and consistency – the key to enabling positive change

Posted on by
Natalie Atkinson

Natalie Atkinson

In this, her second guest post at the Social Care Workforce blog, Natalie Atkinson, a student at the University of Cumbria, updates us on her progress in getting support from her local authority for her studies. There is also news of an upcoming BBC 3 documentary on young people’s experience of the Criminal Justice System and prison. Natalie took part in the Communities of Practice programme: Delivering on the integration agenda for people with multiple and complex needs as an ‘expert by experience’.

Taking part in the ‘Communities of Practice’ research programme run by the Social Care Workforce Research Unit (SCWRU) and Revolving Doors Agency as an expert by experience, has been the start of an amazing year. Having been given the chance to positively use my own ‘lived experience’ to assist in improving front line collaborative responses to people facing multiple needs and exclusions, has given me more confidence to succeed. I never imagined that writing a guest post for the Social Care Workforce blog back in July would play such a huge part in opening doors of opportunity; the power of social media in today’s society is immense. Following on from the guest post I became a contributor for ex-offender.co.uk and was drawn into the world of Twitter; now I am probably classed as a ‘tweeter’.

In November 2013 I finally won my battle with the Local Authority (LA) and received commitment from them to support me through my journey in higher education but more importantly received an apology for how my case had been handled. At the age of 21 I felt that I had been abandoned by Children’s Services when they closed my case and this ultimately made me resent the LA. Yes, Children’s Services have shown compassion and heart in my case, but how many other young people are out there who are not in a position to challenge the decisions that are made about them by different LA’s? Consistency needs to be demonstrated throughout the care system as that is one of the main things a lot of looked after children do not experience. I consider myself to be lucky enough to have the determination and support to challenge decisions.

With only seven months until I graduate with a BSc in Policing, Investigation and Criminology from the University of Cumbria, I still find myself pinching myself to see whether it’s all been a dream. However, the closer I am getting, I am starting to realise that it is reality and this is actually the start of a new chapter in my life. I no longer have to feel ashamed of being a care leaver and an ex-prolific offender because I am actually able to use this to challenge the judgement and prejudices that exist. I can stand as a prime example that you should never give up on a child or a young person and hopefully this will empower individuals, who are in a similar position to one that I have once been in to make changes.

Having left school at such a young age and spending my time snowballing through the Youth Justice System and then the Criminal Justice System (CJS) makes me appreciate the importance of education. A big part of my journey has been returning to education and discovering that I can use my ‘lived experience’ to assist in gaining academic knowledge and I plan to carry on studying and go on to complete an MSc and then a PhD. I have recently been appointed as a Service User Trustee for Homeless Link and I am hopefully able to use my own life experience to campaign for continued and improved support services. One of the biggest opportunities to arise from the guest blog for SCWRU and being a contributor for ex-offender.co.uk has been to use my own experiences as a basis for a BBC 3 documentary on young people’s experience of the CJS and prison, which is due to be aired in April 2014.

Since a young age my life has been like a roller coaster and to this day I still consider my life to be the same but the only difference is, is that I am now part of a positive roller coaster and I get to decide the route I take. I am not able to say for sure what the future will hold for me, but what I do know is that I will always be standing behind the children and young people that are labelled by society; saying if I can do it then so can they. My mission is not to change the world but to challenge the policies and practices that effect children and young people and hopefully one day I might be in a position to influence change.

Natalie Atkinson was an expert by experience on the Communities of Practice programme. Lead researcher at King’s on this project was Senior Research Fellow, Dr Michelle Cornes.

Follow Natalie on Twitter @Nat89atk

Social workers speak out: Remembering our beginnings

Posted on by

Katie Graham, Research Associate at the Social Care Workforce Research Unit, on why we should listen to the recordings of a group of interviews with social workers from the early 1980s.

The Social Care Workforce Research Unit at King’s recently hosted the launch of The WISEArchive Cohen Interviews, a fascinating collection of conversations with 26 social workers reflecting on the early days of the profession. We heard how Alan Cohen during the 1980s had sought out social workers he felt to be pioneers of the profession charting social work activity as early as the 1930s including well-known members of the profession, such as Clare Britton (later Winnicott), Eileen Younghusband, Rose Mary Braithwaite, Enid Warren and Margaret Simey amongst others. These tapes have thankfully been revived, transcribed by volunteers at WISEArchive and edited by Tim Cook and Harry Marsh after 30 years in storage.

Maggie Cohen, herself a social worker, Alan’s partner, shared Alan’s journey through social work, Family Service Units, Social Work lecturing and returning to full-time social work before retiring in 1996. Alan Cohen undertook the interviews with the intention of developing a book, but this did not materialise. Tim Cook described how he and Harry Marsh were invited by WISEArchive to edit, annotate and add context to the interviews with the aim of beginning to realise Alan Cohen’s vision. This work, along with all of the interviews, have now been archived by the Modern Records Centre at the University of Warwick and published online together with the original tapes.

Speakers at the launch of the Cohen Interviews

Participants at the launch on 28 November at King’s (left to right): Olwen Gotts (volunteer transcriber), Harry Marsh (editor), Maggie Cohen, Tim Cook (editor), Barbara Prynn, Helen Ford (Modern Records Centre), Pauline Weinstein (WISEArchive), Professor Jill Manthorpe (King’s College London)

One of the first questions Alan Cohen asked of his interviewees was how and why they chose social work. At the launch event, Pauline Weinstein, the director of WISEArchive, posed the same question to Barbara Prynn. The answer given by Barbara, as I suspect to be the case for many social workers both now and then, is not entirely straightforward and prompted many questions and comments from the audience. Remembrances of social work’s foundation as a negotiation between common sense, practical social work and the ‘psychoanalytical fringe’ and the cycles of policy making and changes in perceptions of ‘good’ and ‘oppressive’ practice. These interviews narrate the forming of ‘Social Work’ as a profession from the formative social sciences course at the London School of Economics (amongst others) and disparate professions of Psychiatric Social Work and Almoners. The coming, going and perhaps coming again (in Scotland at least) of community work, genericism versus specialism in practice as well as more foundational perspectives of the social work role and analysis of the individual and of structural inequalities were also areas of discussion and comment.

Listening to some of these interviews whilst writing this blog I would urge social workers and anyone interested in social work to play the tapes (very easy to do).  When Alan Cohen asked Enid Warren why she became a social worker she described it as, not an active choice, but the result of a ‘process of elimination’.  Geraldine Aves said ‘I had no intention of being a social worker’, but became a social worker ‘very much by the backdoor’ and Clare Winnicott took a long pause before she cited her family’s influence. Although the route into social work may not have been clear, there seemed to be a common thread amongst the interviewees of a determination to do something that could be useful.

Entry into social work is probably rarely uneventful and neither is the career. For myself, the daughter of two social workers, my choice may have been unimaginative. As a social worker I have experienced ambivalence about statutory social work practice this event and these archives offered the opportunity to look back, hear social workers talk about their experiences and dilemmas, and reflect on them in our current situation. The history of social work is a history of change, within, outside and hopefully because of the profession. Drawing on this history during the introduction to the launch of the archives Professor Jill Manthorpe of the Social Care Workforce Research Unit at King’s College London, the host of the launch, positioned this as its strength, adding her personal view that ‘all social workers are pioneers’, members of an evolving and hopefully responsive profession. I left this event in a reflective mood, keen to listen more and would like to thank all involved in making these archives accessible to us all.

Katie Graham is Research Associate at the Social Care Workforce Research Unit at King’s College London. The launch event took place at King’s on 28 November 2013. Those with an interest in social work history may also like to join the Social Work History Network.

@scwru | @wisearchive | #cohenint

All change for social work – shifting the pieces but not the problems?

Posted on by
Dr Mary Baginsky

Dr Mary Baginsky

Dr Mary Baginsky is Visiting Senior Research Fellow at the Social Care Workforce Research Unit. Dr Baginsky, who leads a seminar on 3 December 2013 on Retaining experienced social workers in children’s services, here responds to the comments of the Education Secretary yesterday.

In speaking to the NSPCC on 12 November 2013 Michael Gove MP, the Secretary of State for Education, has pledged to overhaul the child protection system and reform social work training. It is not clear what the former will entail, but there is no mention of the multi-agency approach that has underpinned the system that has come to be known as ‘child protection’. There are references to failing authorities, Birmingham being specifically identified, as well as the success of Hackney. If only everything was so clear-cut. Money was available to achieve the reported transformation of Hackney—a great deal more would be required to do the same in Birmingham and that level of financial support does not seem to be forthcoming at a time when we are told the biggest cuts to council budgets are still to come. In addition we have lost the Children’s Improvement Board just at a time when it is needed to support ‘failing’ and ‘failed’ authorities and facilitate peer support that has been shown to work well.

How many social workers will be saying ‘no more system change for child protection and no more change for initial social work training’? Again it is not clear what is intended for social work training. The Secretary of State says that Step Up has been successful, but not successful enough at recruiting sufficient great people. So would one solution not be to extend the numbers on Step Up instead of supporting another route? But then do we know which people are now being recruited onto courses? Money would be well spent in improving the data sets around social work education so we can move from anecdote and guesswork to a position where we are able to make confident statements.

In the past six years there has been a range of initiatives that have transformed social work education, alongside the recommendations that came from the Social Work Task Force. The money to support many of these has now disappeared, but they have influenced practice and many local authorities are trying to sustain the work. Although based on anecdote it is anecdote that arises from numerous conversations around the country—many local authorities are commenting on the noticeable improvement in the quality of their newly qualified social workers. This is not to say that everything is perfect but we do need to acknowledge the strides that have been made. The really sensible thing would be to try to maintain this improvement and take steps to retain those committed and intelligent entrants who are already coming into the profession. The image that the Secretary of State appears to have of social work education and social work students will not help. Too much listening to the radio programme ‘Clare in the Community’ perhaps—which is so funny because it is so extreme and atypical.

Mary Baginsky is Visiting Senior Research Fellow at the Social Care Workforce Research Unit at King’s College London. She is author, with Claire Teague, of Speaking from Experience: the views of the first cohort of trainees of Step Up to Social Work (Department for Education, June 2013).

Dr Baginsky leads a seminar on 3 December 2013 ‘Retaining experienced social workers in children’s services: the challenge facing local authorities in England’ based on her report of the same title (August 2013)—places still available, attendance is free.

@abbotsky | @scwru

Nearly there? The Care Bill and adult safeguarding

Posted on by

Caroline Norrie and Katie Graham provide an update on the progress of the Care Bill through Parliament with particular reference to its impact on adult safeguarding.

The Care Bill—described as “the biggest overhaul of social care rules for 65 years” (The Guardian, 9 October, 2013)—had its first reading in the House of Commons last week after completing its passage through the House of Lords. The scope of the Bill is extensive, attempting to amalgamate the dispersed and patchy adult social care legislation and including stipulations around social care assessment and funding changes. However, as researchers working on a project about adult safeguarding, we have been following the new adult safeguarding components of the Bill with much interest.

Katie attended the second reading of the Bill on 22 May. Lord Howe presented wellbeing as a central principle of the Bill whilst outlining plans for care funding arrangements (following, though not implementing, all Dilnot’s recommendations), a response to the Francis Report (not including the recommended regulation of social care and health care assistants), a strengthening of carers’ rights and a commitment to place adult safeguarding on a statutory footing.

The principles behind the Bill appeared to be welcomed by many of the speakers that day in the House, although with important caveats. Lord Howe alluded to one of the fundamental difficulties enacting the vision when saying “[a]s a nation we are living longer, which I am sure all noble Lords welcome. Managing the fiscal consequences of this will be a key challenge in the coming years”. Baroness Wheeler brought into stark reality the dire state of local authority funding, highlighting that councils “…by the end of this spending round, will have been stripped of £2.7 billion from their adult social care services, equivalent to 20% of their care budgets, as demand for services increases”.

More recently Caroline attended the House of Lords to listen to amendments tabled at the Bill’s 1st sitting of the report stage on 9 October. Discussions included an amendment which was successfully tabled by the Patron of Action on Adult Abuse, Baroness Greengross, to introduce a duty on councils to provide people with an independent advocate during assessment and support planning if they would otherwise have difficulty in understanding or communicating information, and have no one else to represent them.

Baroness Greengross also proposed amendments aimed at giving social workers powers to obtain court orders to gain access to enter private homes where they suspect a vulnerable adult is being abused but coerced into silence. These amendments were defeated with ministers arguing that existing legal powers were sufficient and social workers needed to improve their skills and knowledge in applying them to protect adults. (Power of entry is already available to social workers in Scotland.)  A survey of The College of Social Work members last year showed strong support for a qualified power of access by a social worker to interview a vulnerable adult where this was being blocked by a third party. Lobbying on this issue continues.

Other elements of the Bill with specific implications for safeguarding practice include:

Enquiries by Local Authorities

The Care Bill proposes a new legal duty for local authorities to make enquiries when they have a reasonable cause to suspect that an adult in their area has a need of care and support, is at risk of abuse and neglect and is unable to protect him or herself. The local authority must make whatever enquiries it thinks necessary to enable it to decide whether any action should be taken in that adult’s case. The Care Bill also confirms, for the first time in law, that “abuse” includes financial abuse. That includes having money or property stolen; being defrauded; being put under pressure in relation to money or other property; and, having money or other property misused. Advocacy organisations including The College of Social Work have been active in lobbying to ensure that people with complex needs are assessed by ‘appropriately qualified staff’.

Safeguarding Adults Boards

Safeguarding Adults Boards are to become statutory and to be composed of multi-disciplinary members. Again, The College of Social Work, amongst others, has been vocal in lobbying to ensure that the local authority representative on safeguarding adult boards should be social work-qualified.

Safeguarding Adult Reviews

The Care Bill proposes local authority Safeguarding Adults Boards must carry out a formal case review if an adult at risk in their area dies in circumstances where abuse or neglect are known or suspected. It must also carry out a review if it suspects that an adult has experienced serious abuse or neglect. Any review must identify the lessons to be learnt from that adult’s case, and apply those lessons to future cases. The stated aim of a review will be to ensure that lessons are learned from such cases; not to allocate blame, but to improve future practice and partnership working, to minimise the possibility of it happening again. With regard to this issue, The College of Social Work has argued for Safeguarding Adult Review teams to “include a social worker with substantial experience of safeguarding work”. Our Unit continues its work on the current system of Serious Case Reviews for adults.

Last week saw the third reading of the Bill in the Lords; a time for tweaking with no major changes suggested. However, there was considerable discussion over an amendment that was tabled, but which after discussion was removed. This focused on safeguarding of vulnerable adults in ‘approved premises’. Lord Patel of Bradford argued that vulnerable people in probation services are not adequately catered for in the Bill and called for a review on “the discharge by probation trusts of their responsibilities for safeguarding adults residing in approved premises” a year after the enactment of the Bill. Lord Patel argued that planned privatisation of probation provision could make it difficult to ensure effective safeguarding provision for those people using probation services. This abandoned amendment raised once more the question of the clarity of roles and responsibilities of all agencies working with people who may be at risk of abuse.

When summing up her contribution to the second reading of the Bill Baroness Campbell said that much depends “on how local authorities choose to implement their responsibilities and powers under this legislation. There is a great danger that this Bill could be ignored as fine words but without teeth”. We await to see what changes, if any, will be made to the Care Bill as it now proceeds through the House of Commons.

Caroline Norrie and Dr Katie Graham are both researchers at the Social Care Workforce Research Unit, King’s College London. They are working on: Models of safeguarding: a study comparing specialist and non-specialist safeguarding teams for adults – currently in its fieldwork stage.

Is a Personal Budget right for you?

Posted on by

Sarah Hamilton, Research Manager at The McPin Foundation, introduces new guides available for practitioners, service users and families getting to grips with Personal Budgets and Direct Payments for people with severe mental illness.

The transformation of social care services and the shift towards personalisation over the last few years has presented many, well discussed challenges for local authorities, social care professionals and service users and their families. In mental health, however, there are specific challenges that need to be addressed. Take up of personal budgets in mental health lags behind other disability groups. In 2012-13, 8.6% of people with mental health problems received self-directed support compared to 27.3% of people with a physical disability and 28.4% of people with a learning disability (HSCIC, 2013).

Is a Personal Budget right for youOur three year research project explored the challenges of introducing personal budgets for severe mental illness in four local authorities. We identified barriers to implementing personalisation that meant that some areas were still struggling to offer personal budgets at all. Chief among these is the difficulty posed by the integration of health and social care, such that personal budgets became the responsibility of both – or sometimes seemingly of neither (Larsen et al, 2013).

Where personal budgets are available, however, other difficulties arise in practice. In the PEOPLE Study we interviewed over 50 people who received, or were applying for, a personal budget to support their mental health, as well as care co-ordinators and families. We found, even among these service users, that there was little awareness of personal budgets, what they are for and how they can be used. The shifting policies and budget cuts of local authorities made it hard for practitioners and service users to get to grips with what was possible. Among many practitioners, patience with these problems had already run out, and we heard how many no longer saw any value in starting a process that was liable to disappoint.

Despite the challenges, however, we also saw how personal budgets and direct payments, when used creatively, could transform lives and give people the determination and the control to manage their lives in the way they wanted. The learning from this research showed how the experience of getting and using personal budgets could be improved, and how practitioners, service users and families can, between them, secure the type of support that makes the biggest difference.

Reaching goals and moving onFrom this research we have produced a series of guides for people with a mental illness, their families, and mental health staff. The guides tell it as it was for the people who shared their stories with us. They point out challenges and offer solutions, and provide examples of what can change for people when it works. They include recorded stories using people’s own words to describe what getting a personal budget was like for them. The guides are freely available to download, use and distribute from Rethink Mental Illness.

 

The research project which led to the guides was delivered in a partnership between The McPin Foundation and Rethink Mental Illness, with support from Jill Manthorpe of the Social Care Workforce Research Unit (SCWRU), King’s College London, and Jerry Tew of the University of Birmingham. It was funded by the Big Lottery.

Sarah Hamilton is based at The McPin Foundation in London. You can contact her on sarahhamilton@mcpin.org, or visit the Foundation’s website to see more of its work.

@McPinFoundation | @Rethink_ | @scwru

References

Adult Social Care Statistics team, Health & Social Care Information Centre, Measures from the Adult Social Care Outcomes Framework, England 2012-13, Provisional Release, 10 July, 2013.

Larsen, J., Ainsworth, E., Harrop, C., Patterson, S., Hamilton, S., Szymczynska, P. Tew, J., Manthorpe, J. & Pinfold, V. (2013). Implementing personalisation for people with mental health problems: A comparative case study of four local authorities in England. Journal of Mental Health, 22(2): 174-182.