Learning disability nursing in an age of fragmentation
Ed Rowe explains how the ‘normalisation’ of people with learning disabilities is selling them short on the specialist care they still need
It must be an interesting time to be a learning disabilities nurse. Since the RCN published Learning from the Past – Setting out the Future in 2011, the quality and equality of health care for the learning-disabled population has gained ever-greater attention.
Of particular interest to learning disability nurses, Strengthening the Commitment, the report of the UK Modernising Learning Disabilities Nursing review, was published in 2013. The stimuli for this paper were the declining numbers of learning disabilities nurses and the increasing fragmentation of their roles. This at a time of growth in the numbers of people with learning disabilities, caused perhaps by better health care and longer life expectancies, and when reports, including Death by Indifference, had highlighted the appalling care some people with learning disabilities were receiving.
There is a wider context. As Anthony Clapham, writing in the art & science section of Nursing Standard (28, 44, 43-50) explains, people with learning disabilities have been at the mercy not only of poor standards of care but also of changing policy. The changing public attitudes to people with learning disabilities have been reflected over the past 100 years in the changing nature of their care, from the Idiots Act 1886, through the Thatcher years and the move away from care in institutions to the community.
This move into the community and the process of ‘normalisation’ - i.e. integrating people with learning disabilities into society - may have been well intentioned, but its effects have been iniquitous, at least in some cases. Without an effective voice to intercede, people with learning disabilities often find themselves marginalised, if not actively maltreated.
Another by-product of the move to care in the community was arguably the fragmentation and dissipation of specialist nurses as a profession, what Clapham calls the ‘social’ model of care. Many learning disability nurses now work outside the NHS, in social, private or voluntary settings.
The Strengthening the Commitment report made 17 recommendations to ensure that learning disabilities nurses are empowered to help people with learning disabilities receive the ‘expert learning disabilities nursing care they need, want and deserve’. These recommendations were aimed at strengthening the capacity, capability, quality and leadership of learning disability nursing.
Progress on the report has recently been published in Strengthening the Commitment - One Year On. This document sets out in broad terms the progress made, along with examples of good practice and the next steps needed. There are some significant achievements. However, as Colin Parish, editor of Learning Disabilities Nursing, counsels, it is early days yet and we'll have a clearer idea of the real progress made in five years’ time.
Some of the Strengthening the Commitment recommendations are further ahead than others. The progress report suggests, for example, that the ‘timeframe for learning disabilities nursing research will need to be extended to ensure that practice now, and in the future, is evidence based and the impact of interventions can be clearly demonstrated’ (Recommendation 17).
This may result in part from the particular nature of the learning disabilities population. Though growing in number, people with learning disabilities are a disparate group, with diverse needs. This makes it difficult to achieve sufficient sample size and therefore statistical power to reach meaningful conclusions on the impact of interventions on patient outcomes.
It's a point Clapham makes well in his article. But, as he adds, the need for specialist learning disability nurses and the help they can provide people with learning disabilities - whether in the healthcare or social systems - is not in doubt.
About the author
Ed Rowe trained at St Mary’s Hospital in Paddington, London, in the late 1980s and practised in general surgery. He now works on Nursing Standard’s art & science desk as a clinical editor. Ed blogs in a personal capacity about the NHS and health-related issues at http://livesintheirhands.wordpress.com/
Follow Ed on Twitter: @edrowe0