Editorial

Abstract

Welcome to the first issue of the journal in 2008. It appears at the end of the consultation period for Valuing People Now (2007), the second sequel to the original White Paper, Valuing People (2001). Will this third document in the series lead to any significant changes? As usual there is no shortage of good ideas as to what would make life better for people with learning disabilities. The original Valuing People set out the key guiding principles. Five years later, Valuing People: The story so far (2005) reviewed the progress made towards achieving those goals and logged what still needed to be done. Two years on, Valuing People Now is re-stating the key principles and goals. At the same time, however, learning disability services are being cut with severe consequences for people with learning disabilities and their families. The fight-back has started, with the establishment of the Learning Disability Coalition 18 months ago. The ‘In Conversation’ piece in this issue sees Andrew Holman talking to Heather Honour, the campaign and policy manager, about her work for the coalition. Part of her remit is to provide the ‘stories and hard facts’ about what is happening to people at a local level, and how the cuts are affecting their lives. The papers in this issue testify to the fact that much still needs to be done to bring about positive changes in people’s lives before the Valuing People principles become a reality for everyone. The papers in this collection address the difficulties of providing services for people with particular needs – including older people with and without dementia, people who have complex health needs, children and young people with visual impairment and learning disabilities, young offenders with Asperger syndrome, and people who self-injure. The papers describe the array of research methods used by the authors to find out what services or approaches were needed by the various groups, and address the layers of complexity which emerge from their studies. There are many questions raised but, not surprisingly, there are few definitive answers to them. The papers, separately and together, add to our collective understanding of the complex issues involved in providing for people with particular needs; but also point to the difficulties inherent in translating this understanding into good practice. In most instances, it seems, further work is needed, not only for further research but for developing appropriate provision to meet people’s needs. The two papers on dementia which open this edition address widely contrasting aspects of this important topic. The paper by Liz Forbat and Heather Wilkinson describes a qualitative study designed to elicit the views of people with dementia, and the people who lived with them, in order to see what sort of accommodation would best meet the needs of the former group. The picture which emerged was far from straightforward or conclusive, as the authors uncovered ‘layers of complexity’. By way of contrast, Nicola Jervis and Linda Prinsloo describe the development by the Manchester Learning Disability Partnership of a multi-disciplinary screening project for people with Down syndrome. The aim of the project was to set up baseline assessments for people in the 25 to 30-year age group so that any future changes could be identified and monitored with a view to making an early diagnosis and, where appropriate, prescribing anti-dementia medication. The paper explores in detail the screening of 135 adults with Down syndrome and the practical considerations involved, including the time and input required at a local level to make this happen. Three papers address the topic of health needs and the complexity of providing good quality health care for people with learning disabilities. In a rare attempt to include people with learning disabilities, carers and staff in the research process, Anita Young and Rosemary Chesson describe the participatory methodology they used to enable their research participants to devise research questions on health risks. In a careful, stage by stage approach, using scenarios to outline types of health risks, their paper demonstrates the feasibility of involving service users and carers in developing and prioritising research questions on health issues. Two subsequent papers address the issue of providing good quality services for people with complex health needs. In his paper, Martin Campbell reports on a study in Scotland which used peer review teams to assess the quality of health services for people with complex needs, including challenging behaviour, mental health problems and multiple/profound impairments. Interestingly, though perhaps not surprisingly, he concludes that those Health Boards that were ‘getting it right’ for people with complex health needs were also more likely to be the ones providing good quality services overall for people with learning disabilities. In their audit of adults with profound and multiple learning disabilities in a West Midlands Community Health Trust, Deborah Gittins and Nikki Rose aimed to get an overview of people’s health needs in order to inform current and future service provision. Their study included 61 adults ‘with complex needs and multiple health requirements’. The audit was seen as the starting point for developing local awareness of the needs of a specific group of people with learning disabilities. It was also seen as the first stage both in creating a specialist register and in developing a service specifically for people with complex health needs from within the Trust. Turning next to policy and practice in education, Sally French uses documentary evidence and in-depth oral history interviews to explore the educational experiences of children with visual impairments and learning disabilities in the 20th century. The complexity of providing for the relatively small numbers of children with visual impairments meant that some were left at home, while others were placed in inappropriate institutions or in special schools without extra support. Although this is a historical paper, the implications for current educational policy and practice are clear – and just as challenging. Continuing the theme of people with learning disabilities with particular needs, Philip Paterson considers the situation of young offenders with Asperger syndrome – and uses the case studies of Paul and Michael to illustrate the difficulties they face in coping in prison. Using a combination of interviews, observation, informal discussion and documentary evidence, Paterson builds a detailed picture of the lives of two people in prison and the additional difficulties they faced because of the nature of Asperger’s and, as a result, the ways in which other prisoners came to see and react to them. In their paper (Why couldn’t I stop her?), Helen Duperouzel and Rebecca Fish report the views and experiences of nine people who self-injure and the views of staff who work with them in a medium secure unit. Using a phenomenological approach the authors gained ‘rich descriptions’ of people’s experiences. Four main themes emerged, highlighting in particular issues around understanding, communication, control and blame. The main messages seemed to be that a blame culture was unhelpful, and that better training for staff was required in order to increase their understanding and their capacity to be supportive of the people they were working with. The final paper in this issue is a qualitative study by Deborah Davys and Carol Haigh of the views of older parents of people with learning disabilities regarding future accommodation needs. The authors found that their respondents were dissatisfied with both statutory and private services and had additional concerns about their own ageing, financial implications and the possible long term consequences of the shortfall in care for their nondisabled sons and daughters. Sadly, there is nothing new in this scenario – even though it is now 7 years on from Valuing People.