42 British Journal of Learning Disabilities Vol. 27 (1 999)

Editorial

Dorothy Atkinson and Jan Walmsley

Welcome to this second issue of 1999. We are pleased to pick up again one of the themes of Volume 26, No. 4, Research and Ethics, with a keynote review by Professor Chris Kiernan which gives an overview of the arguments for involving people with learning difficulties in research as respondents/mformants, and which explores important questions about the extent to which people with learn- ing difficulties can gain more control over the research process as a whole.

Val Williams’s paper, ’Researching Together ’, describes a project whch set out to show that people with learning difficulties can become meaningfully involved in research as more than just respondents. Journal readers may find it helpful to read these first two papers together as, quite by coincidence, Williams takes up one of the challenges Kiernan suggests and the juxtaposition gives an oppor- tunity to consider the theoretical position outlined in the Keynote Review in the light of a worked example from research practice.

The third paper, ’Satisfaction for All: A Framework for Assessing Life Satisfaction for All People with Learning Disabilities’, by Della Money and Graham Collins, also addresses the question of involving people with learn- ing difficulties in research but in a very different context. As Kiernan and Williams acknowledge, only very few people with learning difficulties will ever aspire to do research. It is, however, important to find ways of ascer- taining people’s levels of satisfaction with services. The approach advocated in this paper seeks to elicit satisfac- tion levels from all users of a service. Its merits are that it sets out a straightforward framework for use with people with all levels of ability including people with no formal language, and is a method to be used in any ser- vice setting by staff with little formal research training.

Whereas the first three papers in this issue address in various ways questions about including people with learning difficulties in research and evaluation, the last four papers all deal with aspects of health care. Once health care was a relatively neglected subject in the field. This is by no means the case any longer and these four papers indicate the breadth of interest in the subject.

There have been a number of papers in resent issues of the journal and elsewhere which examine the provision of primary health care for people with learning diffi- culties. The paper by David Martin and Ashok Roy, ‘A Comparative Review of Primary Health Care Models for People with Learning Disabilities: Towards the Pro- vision of Seamless Health Care’, is a useful review of different models put forward to improve access to these vital services. The authors call for a collaborative and a

pro-active approach to ensure that people with learning difficulties do not continue to be deprived of basic health care.

’Community Care for People with Learning Disabilities: Specialist Learning Disabilities Health Services Following Resettlement’, by Nicola Bailey and Sally-Ann Cooper, underlines the messages in Martin and Roy’s paper. The authors show that specialist NHS services for people with learning difficulties have not been maintained as hos- pitals close. Normalisation and ordinary life principles advocate that people with learning difficulties should be able to use mainstream services; it is also important that there is access to specialist services if needed. This paper shows that these specialist services are declining - the message is, as from the previous paper, that the NHS is still ill-equipped to provide adequate health care for people with learning difficulties.

The final two papers address more specific issues from the consumer end. Emma Hawkins and Richard Shillitoe’s, ’Psychosocial Aspects of the Management of Epilepsy in People who have Learning Disabilities’ argue that while epilepsy can threaten the quality of anyone’s life the issues are that much more complex for people with learning disabilities. Severe epilepsy is potentially stigmatising and can certainly undermine independence. It is also a health issue and needs ’effec- tive management’. To be effective means people working together (carers, primary care team and specialists) and working with the individual person in their ’psycho- social context’. ’Effective management’ of epilepsy, accord- ing to the authors, goes beyond the medical control of seizures to take into account the person’s overall quality of life.

Regular physical exercise is also a contributor to quality of life. However, the research evidence reviewed by Peter Messent, Carlton Cooke and Jonathan Long in ’What Choice: A Consideration of the Level of Opportunity for People with Mild and Moderate Learning Disabilities to Lead a Physically Active Life’ suggest low levels of phy- sical activity amongst people with learning difficulties overall, with consequent knock-on effects for physical well being and longevity. The authors go on to discuss opportunities to undertake exercise within a human rights perspective and postulate that the opportunity to be physically active is denied to many people with learning difficulties because of low staffing levels and perceived risk factors. This is, they suggest, a denial of a human right, and rectifying this should be actively addressed in the process of commissioning and delivering services.

We hope readers enjoy the varied debates and prac- tical ideas the papers in this issue represent.