Adult Social Care – where’s the evidence?

Jo Moriarty Nov 2014bJo Moriarty and Martin Stevens are Senior Research Fellows at the Social Care Workforce Research Unit. (1,192 words)

People often talk about the absence of a social care evidence base, but ‘patchy’ is a far better description. Until we arMartin Stevense more explicit about this, it will be difficult to make progress in achieving evidence based policy and practice. We took part in two Meet the Researcher sessions at an event jointly organised by Research in Practice for Adults (RIPfA), the British Association of Social Workers (BASW) and the Association of Directors of Adult Social Services (ADASS). They were part of a day-long seminar designed to bring Directors and Assistant Directors of Adult Social Care and researchers together to discuss current and future adult social care research. Continue reading

Social work research with adults in England: The state we’re in

Manthorpe and Moriarty 2016 Social work research-01The adult social work sector in England needs to urgently identify its key research priorities, in an inclusive and rigorous way, if it is to generate the ideas and evidence needed to ensure that people receive the best possible support, according to researchers at the Policy Institute, King’s College London.

In a discussion paper on the state of social work research with adults in England, the researchers stress that the profession needs to be underpinned by research if it is to survive and to flourish. Among their recommendations are the establishment of a network that provides learning and mentor support for early career researchers, practitioner researchers, and managers interested in adult social work research, something that currently exists for researchers working on subjects such as ageing or in health services research. Continue reading

Discharged home with no home to go to

Peer research is a distinct type of service user involvement extending the expertise of lived experience into research. In peer research people with direct experience are involved in designing, delivering and shaping research (Revolving Doors, 2016).The Homelessness Research Programme at the Social Care Workforce Research Unit is currently running two research projects involving peer researchers. The first is looking at specialist primary care and the second at hospital discharge arrangements for homeless people. Both projects recently ran training and induction days for their peer researchers. In this blog James Fuller and Alan Kilmister (Peer Researchers on the Hospital Discharge Project) describe how they became involved in peer research, how their experience can make a difference and why striving for impact and change must be at the heart of this kind of participatory methodology. (1,372 words)

James: I am currently working as a support worker in a ‘day centre’ for homeless people in London. The main motive for throwing myself into the hospital discharge research project is a strong sense of righteous indignation at the way the people who use our service are routinely returned there by hospital staff who should know we have no accommodation – the clue is in our title!

One man has been delivered to our car park three times this year, on two occasions in a taxi, always clutching his transparent bag of medicines and still wearing his ward wristband. All we can do is get him to see our wonderful specialist nurse at the earliest opportunity (she can only fit us in one day a week) and use our best first-aiding to tend any wounds.

In the dark days I was myself discharged from hospital detox onto the street, which meant I couldn’t access even daytime rehabs, not having a secure address in what had been my local borough for more than five years. I was back in detox six months later. In the interim I was put out of the Emergency Investigation Unit of a well-known London hospital in pretty short order and with nowhere to go. Such experiences stick in the mind. Continue reading

Let’s Talk – Piloting an educational drama in a care home

Caroline Norrie Dr Michelle CornesCaroline Norrie (left) and Michelle Cornes are, respectively, Research Fellow and Senior Research Fellow at the Social Care Workforce Research Unit. (666 words)

A Transformative Research Fund grant has been awarded to researchers from the Social Care Workforce Research Unit (SCWRU) at King’s College London to pilot an educational drama initiative in a care home in Cumbria. Care home staff, multi-agency colleagues (such as GPs and physiotherapists) and residents will hopefully volunteer to take part in a drama called Let’s Talk, which is designed to stimulate discussion about working relationships. As well as piloting the drama, three interprofessional, reflective ‘Community of Practice’ (CoP) meetings will be held which will act as a forum to discuss care home practices and ideas for change. Continue reading

What do we know about managers of care homes?

Katharine OrellanaKatharine Orellana is a Research Training Fellow at the Social Care Workforce Research Unit in the Policy Institute at King’s. Katharine’s Care Home Managers: a scoping review of evidence is published today by NIHR School for Social Care Research. (589 words)

We have a tendency to put care home managers at the back of our minds until a crisis hits the headlines. On such sad occasions, there is suddenly a lot of interest in them.

In England, around 460,000 adults live in 17,350 care homes that have a staff body of around 560,000. Care homes are hugely varied in many ways. They range from small, family businesses to large national and multinational chains offering anything from 1 – 215 beds. Homes may cater for more than one group of people, but they all provide accommodation and personal care. Just over a quarter of them also offer nursing, and these account for about half of all places in care homes as they tend to be larger operations. Staff must support residents with increasingly complex needs. Continue reading

The challenges of mental health for social science and policy

Guntars Ermansons, student in the Department of Social Science, Health and Medicine, introduces a report on a workshop held earlier this summer. See the full report of the workshop. (309 words)

On 19 June 2014, a workshop on “The Challenges of Mental Health for Social Science and Policy” was held at King’s College London, Waterloo Campus. Supported by the King’s Interdisciplinary Social Science Doctoral Training Centre’s Science & Society initiative and organized by the Department of Social Science, Health and Medicine, in collaboration with the Institute of Psychiatry and Social Care Workforce Research Unit, the workshop hosted a number of distinguished speakers and experts on mental health and involved postgraduate and early career researchers. Continue reading

Risks and barriers to organisations conducting research

by Martin Stevens, Senior Research Fellow at the Social Care Workforce Research Unit at King’s College London. (2,114 words)

The Health Research Authority (HRA) is currently consulting on various aspects of research regulation in health and social care in preparation for replacing the Research Governance Framework (RGF). The Social Care Workforce Research Unit (SCWRU) has had a long involvement with the implementation of Research Governance in social care and has made a response to part of this consultation. The HRA is currently asking ‘What are the risks to research because of perceived risks of research? and has published a report explaining its proposed approach. There is much with which we agree in the consultation report, specifically:

  • the focus on clear and consistent definitions of terms;
  • the emphasis on collaboration;
  • the promotion of sound arrangements between the different organisations involved in research;
  • the promotion of a quality research culture, within research organisations and also in care organisations; and,
  • the need for more explicit support for a high quality research culture.

However, despite the focus on good collaboration and the need to involve all stakeholders, the document needs to better reflect the experiences of social care researchers, and those responsible for research governance in local authorities. Continue reading

Following a pathway to impact

Valerie Lipman

Valerie Lipman

The Social Care Workforce Research Unit is part of the Policy Institute @ King’s, which is furthering the cause of evidence-informed policy and practice. Valerie Lipman, a social gerontologist and a postdoc Intern at the Unit, reports on an event which examined the questions that arise where academia, funders, policy-makers, and practitioners meet.

I went to a great panel discussion last week: ‘The impact of impact: who are we researching for?’. The event, the last of the year organised by KISS-DTC* was moderated by BBC journalist Mark Easton. Lots of talking about the history of research, its purpose, why do we do it, what’s meant to happen to it when done, and who cares? And that for me is the critical question. Who cares, or rather who do I want to care about the research I’ve done? Why would you bother doing social science research unless you wanted something to be different as a result? This view has been the order of the day for some time now, and the proof is in how money is made available for research, and the ability of those carrying out the research to disseminate and inform others.

From their different perspectives three panellists presented the case about why impact matters. In the academic corner we had Dame Janet Finch, chair of the social sciences panel for the REF, arguing a strong moral case that researchers have a responsibility to make their research available and that the ‘impact’ element of the REF is here to stay. Aileen Murphie, Director, DCLG & Local Government VFM, promoted the need for evidence-based policy, though as members of the audience argued this can result in favouring government priorities occluding an openness to new ideas. And representing a position between the academic and government worlds was Anthony Tomei, former Director of the Nuffield Foundation: the voice of independence, risk taker in what research to support and an advocate of the importance of quality research that can effect change.

The time when research was allowed to be an expression of freedom and a search for the new—an opportunity to delve into the unknown and emerge with the prize that would change the thinking and actions of others to make a better world—seems to have passed. On the other hand I’ve worked with people in university research departments who’ve never thought about what the purpose of their research was. It was the job of others to interpret the findings and take it further. Obviously, you shouldn’t know the answers to the questions before you start the research or skew your questions to meet what you want it to show—’policy-based evidence’ as someone at the meeting described it. But there must be a way of deciding at the start that you’ll want the results of the research to matter, so how about building in processes at the outset that stimulate debate as you go along … following a ‘pathway to impact’, as Janet Finch said, not merely waiting till the obligatory conference and a couple of academic papers at the end?

Valerie Lipman was recently awarded a PhD by the Centre for Ageing at the University of Southampton. She is a postdoc Intern at the Social Care Workforce Research Unit, developing material from her doctorate for publication here at King’s.

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*KISS-DTC = King’s Interdisciplinary Social Science Doctoral Training Centre

 

Dementia: cure, care and causes

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?

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