At the 9th Deafblind International European Conference

simcock, peterPeter Simcock is Senior Lecturer in Social Work (Adults) at Staffordshire University, and PhD Student, Social Care Workforce Research Unit, King’s College London. He reports from Touch of Closeness: The 9th Deafblind International European Conference, Aalborg. (621 words)

Having been inspired at the 16th Deafblind International (DbI) World Conference in Bucharest in 2015, I was delighted to present at the 9th Deafblind International European Conference, in the lovely city of Aalborg, at the beginning of September 2017. Linda Erikson, pedagogue at the National Resource Centre for Deafblindness in Sweden and herself deafblind, observes that the sense of touch is crucial for all deafblind people. It was therefore fitting that the Conference adopted ‘Touch of Closeness: Maintaining Social Connectedness’ as its theme. Continue reading

Families and children’s services: international perspectives

Dr Mary BaginskyMary Baginsky is Senior Research Fellow at the Social Care Workforce Research Unit at King’s College London. (565 words)

Early in September I had the privilege of attending the International Conference on New Perspectives for Outcome-Based Evaluation and Research on Families and Children’s Services’. It was held at the Chinese University of Hong Kong and emerged from a collaboration between the University, the International Association for Outcome-based Evaluation and Research on Family and Children’s services (iaOBERfcs) and the Zancan Foundation, based in Padua, Italy. It brought together over 150 participants from 14 countries. The conference opened with children and young people performing traditional Chinese drumming and dragon dances and was followed by opening addresses and presentations. As interesting as the latter were, I was still contemplating how the girls at the back of the dragons had danced for 15 minutes while bent at an angle of 90 degrees. Continue reading

Data and Debate – reflections on the SSRG Annual Workshop

Caroline Norrie, Research Fellow at the Social Care Workforce Research Unit in the Policy Institute at King’s, was at the Social Services Research Group Annual Workshop this week. (801 words)

This year’s Social Services Research Group (SSRG) Annual Workshop, held at the London School of Economics (LSE) on 15 April was a particularly thought-provoking event. Entitled ‘Evidencing Service Improvement for Vulnerable Children and Adults’, the workshop featured an expertly chosen group of speakers whose presentations stimulated animated discussion from the floor. With the Care Act coming on stream and the increased drive for integration, participants, who were predominantly social care managers with responsibilities for data and organisational performance, enjoyed a great opportunity to discuss service re-figuration and its measurement. Continue reading

On compassionate care

Dr Joan RapaportDr Joan Rapaport reports on the seventh Annual Joint Conference of the Social Care Workforce Research Unit, Making Research Count, and Age UK London (with support from the British Society of Gerontology), which took place at King’s last week. (2,508 words)

In her welcoming introduction, Professor Jill Manthorpe (Social Care Workforce Research Unit, King’s College London) said the topic ‘Compassionate Care’ had been chosen to explore what we mean by compassion, where it might be needed in older people’s care, its place within the hierarchy of priorities and whether it concerns individuals or wider social relationships. She said the purpose of the conference was to find out:

  • Where is the passion in compassion?
  • Should we all be compassionate all the time?
  • Do all older people want compassion?

Continue reading

Push and pull: doctors deciding to leave the UK for New Zealand

Stephen MartineauStephen Martineau is a researcher at the Social Care Workforce Research Unit in the Policy Institute at King’s. (670 words)

The Social Care Workforce Research Unit (SCWRU) last week hosted a lecture by Robin Gauld of the University of Otago, New Zealand. Professor Gauld, who is 2014 NZ-UK Link Foundation Visiting Professor, presented new research (done with Dr Simon Horsburgh) on the migration of medical professionals from the UK to New Zealand. Audience members, who included the High Commissioner of New Zealand and the Executive Dean of the Faculty of Social Science and Public Policy at King’s, also heard formal responses from Stephen Bach (Dept of Management at King’s) and Jill Manthorpe, Director of SCWRU. Continue reading

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

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?

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


Online dementia training – the future?

In this guest post Professor Rose-Marie Dröes of the Department of Psychiatry at the VU University Medical Centre in Amsterdam relates her experience of developing an online training portal for carers of people with dementia.

It has been a long journey, but our new STAR Training portal was officially launched on 11 October 2013 at the Alzheimer Europe conference in Malta.

This European Lifelong Learning project (known as STAR) has created an online training portal with eight course modules covering the key competence areas for carers of people with dementia. Each module is available at two levels and we hope that the course will serve all kinds of carers, both family carers and professionals. The authors of the course modules are dementia experts from the Netherlands, UK, Sweden and Italy. The project has also included participants from Malta and Romania. Pilots are starting, and anyone can register and try it out.

STAR project

I have learned many things myself in this project, for instance, to really focus on the most relevant themes to include in the course modules so that they will be really useful for family carers and untrained volunteers, but also for professionals.  Also, I have had to learn how to effectively use different web-based interactive strategies to support the e-learning process.

What has been most exciting has been to work together both with dementia experts from different European countries and technology experts who have been able to help us to operationalize our ideas about e-learning for dementia care. This enabled us to compose an e-learning course in different languages and at the same time one that is adapted to different cultures.

But I have also found several things challenging as a researcher. For instance, the writing of the modules, adapting them to the different countries, developing and implementing games, film clips, and tests all took a lot of time. We probably underestimated this in the timeline of the project. As a result we had little time to evaluate the long term effects of the course, that is to say, how it impacts on the knowledge and attitudes of informal carers and professionals. This would be interesting to investigate.

Would I get involved in such a project again? Certainly yes! I think it is very rewarding to be involved in European projects in which educational products and psychosocial interventions are developed and evaluated which in the end may be used in dementia care throughout Europe.

My advice for new researchers, therefore, is to get in touch with international research groups, such as the Interdem network on research into timely psychosocial interventions, and to try to participate in joint international research projects.

Together we can make a much larger impact on innovations in dementia care in Europe.

Professor Rose-Marie Dröes is based at the Department of Psychiatry at the VU University Medical Centre, Amsterdam, the Netherlands: rm.droes@vumc.nl

The Alzheimer Europe conference in Malta at which STAR was launched took place 10-12 October 2013. Twitter hashtag: #23AEC. The conference was also attended by Social Care Workforce Research Unit Director, Professor Jill Manthorpe: see Unit news items.

Dreaming Spires: reflections on the 42nd British Society of Gerontology conference at Oxford

John Miles, PhD candidate with the Centre for Social Gerontology at Keele University and researcher on the Social Care Workforce Research Unit’s Rebuilding Lives study, reports from the British Society of Gerontology conference held earlier this month.

Beginning on Wednesday 11 September around 500 people turned up for the three days of the 2013 British Society of Gerontology (BSG) conference, held this year at Keble College, Oxford, and hosted by the Oxford Institute of Population Ageing. A combination of the Institute’s unique international connections, the prestige of the university itself, and the growing diversity of age-related research, came close to doubling the BSG’s annual attendance. Three linked events drew in well over 100 people in advance on the Tuesday. The turnout required the continuous use of two sites with some occasional overspill on to a few more. Delegates either got an unusual amount of exercise or found themselves grappling with the painfully slow evolution of disability access in a great, listed, Victorian building!

Despite such challenges the conference inspired a great deal of warmth and enthusiasm and its eclectic programme was a constant source of surprise and intrigue. Gerontology is something of a conglomerate, and by its very nature often interdisciplinary. Sessions tended to be grouped by theme rather than discipline, so that a presentation about a survey of 1000 people could be followed by an ethnography of work with ten people in a nursing home. But therein lies some of the conference’s power: as a social gerontologist with sociological inclinations, for example, I found myself in a couple of rich, and productive, post-match discussions with social psychologists. At the ‘Emerging Researchers in Ageing’ event on the Tuesday, cellist Claire Garabedian’s account of her research into playing music to people with dementia was exemplary. She identified herself as a musician and not a therapist. She explained how she had filmed her encounters to supplement and contest her subjective experience of playing one-to-one to individuals in their rooms. She accounted for the complex processes to which her presence in the home gave rise through her dealings with the staff, and with other residents. And she reported a benign impact for many of her auditors.

The cross-currents of such an account with the second plenary at the main conference the following day were significant for me. Literary scholar Helen Small showed four clips from the award-winning documentary Room 335, where the then 19 year-old documentary film-maker Andrew Jencks recorded his stay in a huge Florida nursing home over a period of several weeks. Jencks’ approach might have its drawbacks but it radically demystified the boundaries that supposedly make institutional lives so inaccessible. Moreover, as Small pointed out in a compelling analysis, Jencks’ film established in sociological terms the existence of a robust form of mutual support operating among the residents themselves, none of whom showed any interest in being looked after by their families. Su Su Liu, alongside whom I presented a couple of days later, identified something similar in the outlook of the sixty people she interviewed who attend elders’ community centres in Hong Kong. Friendship among these resilient survivors is more a performance of rhetorical support and social engagement than a pursuit of intimacy or personal trust. In the same session the family sociologist Eric Widmer from Geneva drew on a Bourdieusian perspective to examine the distribution of personal resources within older people’s family networks. This, he argued with me later, is where the social capital that counts is to be found, rather than among the vaguer configurations of ‘community’ into which Robert Putnam’s Bowling Alone has steered so many government-promoted behaviour change initiatives during the last decade. Bola Amaike and Funmi Bammeke from the University of Lagos presented papers about care and support in Nigeria. Their uncompromising demand for men to change their attitudes and expectations underpinned a bold if not quite credible attempt to reconcile the restoration of filial piety with the overthrow of patriarchy!

At the plenary sessions social gerontology itself was interrogated: in its distant relationship to the biological sciences by distinguished stem-cell researcher Paul Fairchild, and to the humanities by Small, and then for being insufficiently ecumenical in its inter-disciplinary relationships at policy level by the World Health Organisation’s John Beard. Whatever the objective justification for these critiques such challenges are welcome and appeared to be well-received. From my perspective, it is our too limited exchanges with economics and political science that remain of greatest concern. Gerontology needs to play a fuller part in challenging government inertia, and contesting destructive corporate agendas, as we plan for, and live in, our ageing society.

John Miles, who works on the Social Care Workforce Research Unit’s Rebuilding Lives study (funded by NIHR School for Social Care Research), has just completed six years on the BSG executive and is a PhD candidate with the Centre for Social Gerontology at Keele University.

Several Unit staff are members of BSG – we organised a symposium on dementia where our mental capacity study work was presented and Unit director Jill Manthorpe chaired a further symposium.

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

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

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

“No going back:  forgotten voices from Prudhoe Hospital”

“No going back: forgotten voices from Prudhoe Hospital”

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

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

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

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

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

Rob Hopkins and Joe McGrath

Rob Hopkins and Joe McGrath

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

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

Mabel Cooper (1944-2013)

Mabel Cooper (1944-2013)

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

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

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