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

Posted on by

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

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

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

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

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

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

About the person alleged to have suffered abuse:

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

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

About the types of alleged abuse

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

About the alleged perpetrators:

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

About the Location of alleged abuse

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

About the Case outcomes

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

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

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

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

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

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

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

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

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

You can contact Caroline Norrie at King’s here: caroline.norrie@kcl.ac.uk

  1. Figures have been rounded to the nearest thousand.

The value of advocacy support for older people affected by cancer

Posted on by

In a guest post Kath Parson, Chief Executive of the Older People’s Advocacy Alliance (OPAAL), writes about a project supporting older people affected by cancer.

‘Cancer, Older People and Advocacy’ is about supporting older people affected by cancer to find their voice and say what it is they want. Evidence from Macmillan Cancer Support, our project partner, and the Department of Health indicates ingrained age discrimination in cancer services: ‘Older people with cancer receive less intensive treatment than younger people. …… there is increasing evidence that under-treatment of older people may occur‘

image001We’re doing our best to change that by recruiting, training and supporting older people who have themselves been affected by cancer to become peer advocates. We’re working on the basis that those who’ve lived through the experience of cancer, either because they or someone close to them have had a cancer diagnosis, are best placed to empathise and support others in the same situation.

I’ve also been affected by cancer and lost relatives and very close friends – so I can relate to a lot of the issues that people have and some of the unfairness that happens… I’m not afraid to challenge. That’s the kind of thing people haven’t got when they have an illness. All those strengths are taken out because of the day to day – the appointments, the pain, and the personal issues they have to deal with. Advocate

image003

Where we’ve struggled so far has been in helping health professionals understand that there might be a problem in cancer services for some older people. Despite the evidence there seems to be a reluctance to refer to independent advocacy. Maybe it’s because they don’t like being questioned or maybe they simply don’t see the need. Whatever the reason, it is a problem. One advocate explains:

That was a difficult session, particularly because there were three consultants in the room. The consultants were quite apprehensive really, I would say, about me being there… One of them actually did ask what my role was, which I explained. I emphasised that my role was not to make decisions for my client. It was to help him to understand the situation, what was on offer, to help him to make some informed choices, and decisions about his treatment and that was OK after that.

To find out more about Cancer, Older People and Advocacy, check out our blog.

Making positive changes

Posted on by

In this guest post, Natalie Atkinson, a student at the University of Cumbria, recounts her own experience of entering further education as a care leaver and ex-offender. 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’. The project was run by the Social Care Workforce Research Unit (SCWRU) at King’s and Revolving Doors.

Having taken part in the ‘Communities of Practice’ programme run by SCWRU and Revolving Doors Agency as an ‘expert by experience’ I learnt a lot about the professional practices which are intended to support people like myself. Much so called recovery orientated practice for example, is about ‘encouraging’ excluded people to take up education, training and employment opportunities.

However, despite these ‘good practices’, I still experience many barriers on a daily basis including financial, discriminatory, stereotypical views that exist around care leavers and ex-offenders. I had to fight to be accepted into University and be given a chance to prove I was a ‘worthwhile’ candidate as I was not the typical ‘safe’ option that would be guaranteed to succeed. Some people still seem to look in shock if they find out I am a care leaver and previous prolific offender studying a Policing and Criminology degree, but I just highlight that I have got all the relevant experience to be successful. Who’s better to work with those in the Criminal Justice System and Care System? Those people with a degree or those with life experience and a degree? I would have to settle for the latter.

It has only just come to my attention that even though Social Services had closed my case at 21, I am entitled to request support for financial assistance for my undergraduate fees and accommodation as a former relevant care leaver… Not that I am expecting a quick response, as it concerns requesting money from a Local Authority. I would not have known about this support if I had not come about it by chance while doing University work. The question that needs to be asked is how many other former relevant care leavers are unaware of their entitlement to support when accessing higher education between the ages of 21 – 25? From my own personal experience I presume this is a substantial amount of people.

I am now entering my third year at University and have recently started to look for funding for a Masters Degree in Criminal Justice that I hope to start in 2014. Yes that’s right; I want to carry on studying in order to better myself and to be able to be in a position to encourage those who have been ‘excluded’ and ‘labelled’ by society to have the confidence and belief in themselves to return to education, training and employment, and build the future that they deserve. I have taken the first steps by nearly completing a degree and securing employment working as a support worker in homeless hostels through my own determination, but how many other people would have given up due to lack of support, knowledge, confidence and funding?

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.

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

Posted on by

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

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

“No going back: forgotten voices from Prudhoe Hospital”

“No going back: forgotten voices from Prudhoe Hospital”

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

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

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

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

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

Rob Hopkins and Joe McGrath

Rob Hopkins and Joe McGrath

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

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

Mabel Cooper (1944-2013)

Mabel Cooper (1944-2013)

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

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

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

Mobility and the researcher today

Posted on by
Dr Kritika Samsi

Dr Kritika Samsi

Kritika Samsi, Research Fellow at the Social Care Workforce Research Unit at King’s College London, was recently invited by the Irish University Association to attend the Researcher Careers & Mobility Conference in Dublin on 14-15 May 2013 (hosted by the European Presidency). Here she reflects on mobility and what it means for researchers today.

The Researcher Careers & Mobility Conference was a packed 24 hours, combining plenary sessions, with panel discussions, and interactive workshop discussions. Informative, challenging and controversial, the conference brought up some significant issues affecting researchers in Europe and globally today.

In our workshop on the subject of Mobility, four types of mobility were identified – geographic, when the individual physically moves countries for opportunities elsewhere; virtual, when the individual engages in collaborative work with partners in different countries; inter-sector, when scientists from academia make the move to industry; multi-disciplinary, when scientists moves between different disciplines within or beyond one single field of study.

Instead of focusing on the question “why is mobility good?” – our workshop group chose to discuss “is mobility good?” – clearly highlighting our orientation, and our need to explore thoroughly whether mobility was always necessary, and whether funding bodies give it too much or too little weight.

Geographic mobility is a significant criterion in most EU funding applications – it is considered useful for the applicant to have had international experience, to demonstrate networks and links with international universities, and to show the ability and willingness to move to other countries for collaborative research in the future. This is, no doubt, a wonderful opportunity for many researchers and one that many embrace with open arms. Not surprisingly, most conference participants had experience with mobility and almost all talked positively about it, saying that they were greatly enriched by the experience. Current initiatives at European immigration level, such as the introduction of the scientific visa that fast-tracks scientists from outside the EU to enable them to work in EU universities and research labs in Europe, were seen as a good development in this regard.

We, however, questioned whether geographic mobility was always possible or valuable, for a number of reasons…

The practicalities of moving are enormous – from understanding differences in tax structures, pension arrangements, and setting up other formalities like bank accounts. Although Euraxess provide some very practical assistance with this, there are additional stressors to finding and setting up home again, getting a new driving licence, that individual researchers have to take on themselves. Getting used to another workplace culture and lifestyle also takes time. If the move is not permanent, we wondered whether the set up costs outweighed the benefits, and whether the emphasis on geographic mobility takes all of these into consideration?

Do all of these practicalities weigh more heavily on certain groups of people – i.e. are some groups marginalized for being immobile? Men and women with families where dual jobs and incomes are necessary, researchers with physical disabilities or those reliant on social welfare for other reasons, researchers with responsibilities for caring for elderly family members, may all have commitments they are unable or choose not to disengage from. Does the stringent need for geographic mobility marginalise what are a significant group of researchers that may be forced into choosing alternative careers?

Another question that arose in discussion was whether it was necessary for a researcher to move if the best place to do research in a certain topic was in the very research centre they were currently based in? Did the current over-emphasis of the value of geographic mobility sometimes mean that researchers and funding bodies do not value their current situations, roles and research centres sufficiently, and so they do not capitalize on current opportunities as much as possible?

We also questioned the concept of ‘over-mobility’ – of moving too much and creating a network of international contacts and support, moving from one post-doc position to another in various international universities, but failing to have ‘put down research roots’ and created a track record in one university long enough to progress up the career ladder. While some agreed that geographic mobility often results in a drop in salary and grade, others felt that this was not always the case and moving to another university/country could be a promotion, thereby increasing the chances of moving up the career ladder.

We debated this and other issues in relation to Horizon 2020 – which means that shorter-term grants are likely to be available under the new funding framework, encouraging those previously discouraged from committing to long-term mobility to apply for shorter spaces of time in other locations. There is also likely to be greater emphasis on the other types of mobility. The effective use of technology may make it less necessary for people to physically move to achieve successful collaboration.

We finished hopeful that this may be the way forward to achieving the right kind of mobility for the right reasons.

Dr Kritika Samsi is Research Fellow at the Social Care Workforce Research Unit, King’s College London. She is also active in the Voice of the Researchers (VoR) network, which aims to act as a bridge between researchers and policy-makers, bringing together researchers and enabling them to take an active role in shaping the European Research Area.

Practice into Research

Posted on by

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

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

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

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

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

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

What do social work and research have in common?

Posted on by
Joan Rapaport

by Joan Rapaport

At the Practitioner Research seminar on Tuesday 30 April Joan Rapaport will ask: ‘Why should social workers do research?’ Here she explains how she personally became interested in this question as an Approved Social Worker and PhD student. And, focusing in this post on Action Research, she points out the degree of overlap between methodology in research and social work practice.

There are still a few places left at the Practitioner Research seminar, which takes place at King’s College London, but please book by end of day Friday 26 April. | #practres

Imagine a world where social workers were enthusiastically sharing ideas, holding seminars to share their latest research findings and encouraging research developments through various support networks. Given the current shortage of practitioner research, could this position ever be achieved? And why should we strive to ensure that it does?

It was only during the course of my PhD study on the neglected role of the nearest relative under the Mental Health Act 1983 (for e-summary see Rapaport, 2012) that I began to be aware of the importance of research and theoretical frameworks to guide and develop practice. Officially recognised as a patient safeguard against unwarranted hospital detention, the nearest relative had attracted considerable concern, especially amongst social workers, because of the potential for the role to land in the hands of poorly motivated relatives. My research confirmed that it was better known for its vices than its virtues. However, it also found that when the nearest relative powers and social work duties worked reciprocally for the ‘patient’s’ benefit, the nearest relative was indeed an effective safeguard. This finding led to a development of normalisation and social role valorisation (‘SRV’) theories and the discovery of reciprocal role valorisation (‘RRV’). This was found to occur:

where the nearest relative and social worker supported each other to achieve mutually respected and identified goals to help the patient which were also recognised by the professionals and significant others involved. (Rapaport, 2012)

Although a discovery of the nearest relative study, RRV is relevant to practitioners because of its versatile potential for other social work settings, especially where professional duties and family responsibilities combine. It also demonstrates how social workers, in the course of fulfilling their duties, can simultaneously enhance their own professional image. The importance of practitioner engagement in research and theory development is once again gaining ground in professional circles (McLean et al., 2012). How might this laudable objective become a reality?

A PhD is a huge undertaking in terms of time and money. Typologies such as Action Research may therefore be more accessible and appealing especially as it is closely linked with practice and uses approaches familiar to practitioners such as qualitative interviews.  It is a strategy for change, can be undertaken by practitioners and service users alike, and readily meets the social work ideals of user empowerment. Models described by Beddoe and Harington (2012) and Frith (2012) amply demonstrate these characteristics. The former describes a project ‘Growing Research in Practice’ (GRIP) to enhance the research capability and confidence of groups of social workers in Auckland, New Zealand. The latter, conducted in Iceland, explored ways of helping children and young people facing predicaments. Both studies, (and also that of the nearest relative) involved full stakeholder participation and methods such as interviews, group discussions, evidence-based trials and evaluations and debriefing sessions – all part and parcel of social work – to gather data. The New Zealand project reported several positive outcomes including opportunities for professional enhancement, shifts in organisational culture, improved collaborative working and opportunities to educate and involve others. The main finding of the Icelandic study was a shift from practitioners making decisions for young people to giving them the knowledge, skills and resources to empower them to make decisions for themselves. In short, both studies had extremely valuable outcomes for all concerned.

Whilst the case for professional development is well made by the above, Action Research may also provide managers with a cost-effective way to conduct in-house evaluations and to shift obstructive cultures and help redefine objectives. Opportunities to develop leadership skills and gain recognition through the dissemination of project findings are also likely outcomes. As an illustration, the findings of the nearest relative study were used to inform the reform of the Mental Health Act 1983 and also a number of other carer and advocacy-type projects.

With the high standards of professional registration and regulation in mind, Action Research would seem to hold promise for the social work profession and service user empowerment. Given its approaches are familiar to social workers, it could arguably become part and parcel of social work practice. Promotional seminars, product champions and support networks will be required to spread the word and further its worthy objectives.

References

Beddoe, L. and Harington, P. (2012) One Step in a Thousand-Mile Journey: Can Civic Practice Be Nurtured in Practitioner Research? Reporting on an Innovative Project. British Journal of Social Work, 42; 74 – 93.

Frith, E. (2012) Child-Directed Social Work Practice: Findings for an Action Research Study in Iceland. British Journal of Social Work, 1-19; doi:10.1093/bjsw/bcs099.

Maclean, S. with Collins, P., Dean, A., Moore, S., and Tucker, G. (2012) The food of good practice. July/August, Professional Social Work.

Rapaport, J. 2012 Reflections on ‘A Relative Affair’: The Nearest Relative under the Mental Health Act 1983. http://www.kcl.ac.uk/scwru/pubs/2012/reports/rapaport2012reflections.pdf

A version of this piece originally appeared in Professional Social Work.

Joan Rapaport is Visiting Research Fellow, Social Care Workforce Research Unit, King’s College London.

Evidence Based Interventions in Dementia: What have we found?

Posted on by

Caroline Norrie reports on the presentation of findings yesterday from the major research programme known as EVIDEM, Evidence Based Interventions in Dementia.

Yesterday was a great day for those of us at the Social Care Workforce Research Unit, King’s College London who worked, together with colleagues from other universities, on the EVIDEM programme on changing practice in dementia care in the community. We joined an invited audience gathered at Friends House, Euston Road, London, to hear a summary of the EVIDEM programme research findings.

Presentations of the findings of this five year research programme were delivered to representatives from the Department of Health, the charity sector, health and social care professions, service user groups and research colleagues. This was the culmination of a huge amount of work and a fantastic opportunity to celebrate the project outputs.

EVIDEM was funded from a National Institute for Health Research (NIHR) grant of £2 million which ran from 2008-2012 with the aim of developing and testing interventions for people with dementia living in the community, including care homes.

Research teams were involved from King’s College London, UCL, LSE, St George’s & Kingston, University of London, University of Hertfordshire and Central and North West London NHS Foundation Trust.

The opening address was given by Professor Alistair Burns, the National Clinical Director for Dementia at NHS England, who outlined key policy goals in dementia such as: timely diagnosis and support for people with dementia; reduction in hospital admissions of people with dementia; improving services in care homes; reduction in the prescribing of anti-psychotic drugs; and care and support for carers. Professor Burns noted, “We are on the threshold of getting the data to change practice in dementia care.” 

Chairs Peter Ashley and Dr. James Warner, then introduced the five speakers and Professor Steve Iliffe from UCL gave an overview of the EVIDEM Programme. This consisted of: EVIDEM ED (education), EVIDEM E (exercise) EVIDEM C (continence) and EVIDEM MCA (Mental Capacity Act), EVIDEM EoL (end of life).

Professor Steve Iliffe opened the presentations with a discussion of EVIDEM ED. The aim of this intervention study was to test a customized educational intervention developed for general practice, promoting earlier diagnosis with management guidelines. Five NHS providers and two overseas organisations have now rolled out this training.This randomized trial, however, showed that the intervention did not appear to change the practice of GPs, which led to discussion of what other levers could be used to encourage GPs to follow best practice guidelines for dementia care.

Dr. James Warner from Central and North West London NHS Foundation Trust introduced EVIDEM E. He discussed results from this randomized trial of exercise as therapy for behavioral and psychological symptoms of dementia (BPSD). Dr Warner described how this was a simple intervention – a person with BPSD and a their carer went on a walk five times a week for 12 weeks. This study found that regular simple exercise does not improve symptoms of BPSD, but it does decrease caregiver burden.

Professor Vari Drennan from Kingston and St. George’s, University of London, presented EVIDEM C. Work on dementia and incontinence is of huge significance because this is a key factor in why people with dementia move into care homes. This group of studies included 4 elements: i) scoping the evidence on prevalence, effective interventions, local clinical guidance on provision of NHS funded incontinent products; and a nested study of the THIN database reporting incidents rates for the first time, for urinary and faecal incontinence in community dwelling people with dementia; ii) a longitudinal study exploring the experiences and strategies of people with dementia, their family carers and health and social care professionals; iii) a feasibility study of the investigation of the effectiveness and acceptability of different designs of continence pads; and, iv) the design of a continence assessment tool tailored to the needs of people with dementia. Findings from Professor Drennan’s research team showed that the incidence of incontinence in community dwelling people with dementia is at least double that in a matched population. The use of indwelling urinary catheters, a management strategy discouraged by international and national clinical guidelines was in fact found to be double the rate in people with dementia compared to a matched population. The presence of faecal incontinence was found to significantly increase expenditure by almost two-thirds from both a health and social care perspective. “This study suggests that there are strategies and responses that primary care professionals and others can employ to encourage greater openness, thereby lessening the taboo of incontinence within the stigma of dementia.” added Prof Drennan.

Professor Jill Manthorpe, Director of the Social Care Workforce Research Unit, King’s College London outlined EVIDEM MCA. This project involved developing practice in and building evidence on the use of the Mental Capacity Act 2005 (MCA). Professor Manthorpe’s research showed that dementia care services and practitioners have traditionally not conceptualised their practice as being framed by legal rules. The MCA has proved a major challenge to this and dementia care. Key points from this presentation were that practitioners in dementia care need to be legally literate and aware of the new clauses making neglect and abuse criminal offences. There are messages also for thinking about how future changes to the legal framework of social care contained within the Care and Support Bill may be sustained. (Jill Manthorpe and Kritika Samsi’s presentation from the event.)

Professor Claire Goodman, from University of Hertfordshire presented on EVIDEM-EoL: Quality of Care at the End of Life. The project team has found the trajectories of end of life in people with dementia (PWD) are often unclear to care home staff, family and healthcare practitioners. They used Appreciative Inquiry (AI) as a way to enhance professional relationships around the care home. It fostered rapid and sustained engagement between care home staff and GPs, did not increase resource use, reduced use of emergency services and appeared to improve the management of unexpected events and unplanned hospital admissions.

Finally, the afternoon was brought to a close by Professor Steve Iliffe who gave a short presentation on how EVIDEM has worked with the government funded Dementia and Neurodegenerative Diseases Research Network (DeNDRoN) to help build systems to give people with dementia who are interested  in research more choice and opportunity to get involved.

Overall, from the point of view of someone who worked as a researcher on one of the studies, this was a fantastic day, as it was highly satisfying to view the whole, complex programme of studies coming together and the wide range of evidence and research outputs produced.

Caroline Norrie is Research Fellow at the Social Care Workforce Research Unit, King’s College London. She is working on a NIHR School for Social Care Research funded project comparing the costs and benefits of different models of adult safeguarding.

Is the care worker perspective still overlooked in disability research?

Posted on by
Professor Karen Christensen

Professor Karen Christensen

A long time ago – at least as it is defined in the academic world – in the 1990s, the British professor of social policy Clare Ungerson published an article: “Give them the money: Is cash a route to empowerment?” In this article she forecast many of the challenges arising from welfare policies intended to empower disabled people in their everyday lives by means of cash payments. The idea was that instead of letting disabled people receive traditional services such as home help they should receive money to employ their own care workers and this should be “a route to empowerment”. The important contribution that Ungerson made with this early article about these cash payments was to point to the care worker’s perspective within a welfare scheme that aimed at providing services on the user’s terms. If she was critical of disability writers in this and later articles, and she was, so she was subject to criticism herself by disability writers such as Jenny Morris and others.

Since the late 1990s cash-for-care schemes have developed in different ways in many European countries and there is a growing literature investigating this form of welfare. However, this basic tension underpinning the field remains and also, reflecting this tension, the care worker perspective remains the perspective that is under-researched within the disability research field. Although currently ‘multidimensional aspects’ and ‘inter-disciplinary studies’ are keywords for new research projects, many networks and associated research areas are specialized or restricted within limits and this may take some of the research on ‘care’ – actually an unpopular concept within the independent living ideology, which has pushed forward welfare schemes that could empower disabled people – out of disability research. Interestingly, this does not seem to be the case with research on long-term care for older people, where studies about the care of older people are a central part of the research area.

I am currently working on a study about welfare, migration and care work, which is empirically based on life histories of migrant care workers in Norway and the UK, and these questions around disability research arise in the project for two reasons. One is empirical and concerns the life stories: in all of them care work, and particularly personal assistance work for disabled people, plays a role, though the role varies in relation to the different life projects of the migrants. The second reason is that migration is no longer an issue only for countries like the UK with its colonial past and long traditions of bringing migrant workers into the workforce; it has also become an issue in Nordic countries. So here, for example, the health and care sector is one of the main employment areas attracting migrants, in particular women. In the UK, migrants have played a role in the cash-for-care scheme since its start, while this is a more recent phenomenon in Norway. The difference is due to the different timing of the migration waves in the two countries; in the UK starting after the Second World War, while in Norway significant numbers of migrants first started coming after the EU extension in 2004, opening the borders to citizens from several East European countries. In other words: migration is now an issue for the cash-for-care system and for the discussion of disabled people’s empowerment in both countries.

Due to the ageing population in both countries there is a growing need for workers in the health and care sector. However, in the UK, and Norway (as well as the other Nordic countries), this sector is experiencing a recruitment problem, in particular regarding direct care jobs. This type of work is stigmatized as female low status work and, particularly in the UK, is associated with very low wages. Therefore the work is often seen as unattractive to indigenous workers and the shortages caused by this contribute to the explanation as to why the work appeals to migrant workers. Among the multiple motivations for migrants taking up this work are, for example, the lack of recognition of their qualifications and the necessity therefore to take the kind of jobs that are available and the flexibility of these kinds of jobs (part time, no fixed hours, live-in options etc.) which may appeal to their specific life situation. Overall, the structural point of departure, however, is of a reserve workforce situation which raises issues regarding, for example, the risks of developing working conditions which are below the general standards in these countries. Another risk, particularly in the UK, concerns the widespread use of private agencies supporting disabled people in their employer role, but often for a price that reduces the care workers’ wages significantly. Both disabled people and care workers are vulnerable groups under such circumstances.

What I am trying to say is that empowerment for disabled people is not only a disability project, but also still – and maybe even more so now, due to the new groups of workers entering the labour market – a care work issue. Care work is increasingly globalized: labour markets are no longer restricted to localities or countries. New worldwide job seeker web sites have been established and the rapid development of technology makes it possible to keep in contact with families in the home country. Including these changes in the discussion requires paying attention to the ways migrant care workers themselves handle their work situation as part of their lives. The life history perspective affords us a way of understanding this as an ongoing process of balancing individual preferences with the structural conditions set by immigration policies and the way in which the welfare scheme is implemented, as well as enabling us to examine concrete interactions with disabled people about the assistance they need and want to control in their everyday lives. Without knowledge of the care worker side, future discussions on how to empower disabled people will lack insight. These future discussions will benefit from opening the borders between disability and care work.

A version of this piece, together with the photograph of Prof Christensen, was originally posted on the blog of Nordic Network on Disability Research, 12 December 2012.

Karen Christensen, Professor of Sociology at the University of Bergen, is Visiting Research Fellow at the Social Care Workforce Research Unit at King’s College London. Her co-authored report on the marketization of older people’s services in Scandinavia is forthcoming. She took part in the Invisible Communities conference here at King’s. For more of Professor Christensen’s work on the Norwegian context see the Research On Workforce Mobility network, of which she is a member.