Specialist, palliative, and rehabilitative care for people with learning disabilities

This is a new publication in the same vein as Mencap’s ‘Death by Indifference’ shocker of a couple of years ago which exposed the scandalous way in which people with learning disabilities are often treated by the NHS. Not generally through malignance or harmful intent but through ignorance and blindness to their difficulties. Something called diagnostic overshadowing makes it difficult for many health care professionals to see beyond the learning disability so that other conditions, often physical or psychological and some of them as basic as being unable to eat without prompting, are over-looked.

Jo Lee, physiotherapist in our team, arrived in my office one morning spitting feathers about the cycle of neglect that one of her patients had experienced on a general ward. She went on to talk with undiminished heat about other patients whose inability to make independent use of instructions and facilities meant that they failed to maintain the improvements set in motion by active treatments such as intravenous fluids, assistance with eating, and support with mobility. Once these very hands-on interventions were removed, at the point where most of us would appreciate the need to be a bit more independent and self-starting, her patients were simply stopping. They didn’t know how to do the exercises themselves or they were frightened by the memory of the pain, they didn’t cough as required, they didn’t drink enough or eat and no one thought to remind them. As a result, their original condition failed to improve, they developed chest infections, kidney infections, were poorly nourished and began to deteriorate. Some died right there in the hospital as a result of avoidable illness.

Dual diagnosis further complicated matters. Having a learning disability AND dementia, for instance, makes finding residential care an almost impossible task due to the very strategies put in place to protect people. For homes to be registered, there has to be training in the care area covered by the registration and where there are two specialist areas, that’s two lots of training and an extra fee. When the demand for beds is so high as to make it unnecessary to go to the extra effort and expense of dual registration, why would anyone take the trouble? And so people with learning disability and dementia could find themselves languishing on a ward where nursing staff did not know what to do with them instead of being discharged to a service that would endeavor to make their lives comfortable and homely in their declining years.

A little while earlier, my colleagues and I had experienced something similar when a man with Down’s Syndrome had died because it had been impossible to convince general health colleagues and funding bodies that he was anorexic. Diagnostic masking obliterated the classic signs so that people could not see beyond his features and recognise that he was starving. My close colleague, Dr Elizabeth Scott-Gliba who had held a consultant post in eating disorders before joining our service, practically lived on the ward or on the end of her phone trying to establish a proper re-feeding regime and specialist service for him but too late. This man died the day a bed in a specialist unit and the funding to go with it became available.

In our paper, Jo and I detail the issues underlying these travesties and, with short case studies provided by other colleagues, describe what happened to four individuals. Three are tragic and awful and avoidable. One is creative, rule-bending and good-enough. As yet, this one is an exception but there is a very bright light being turned on health practice for vulnerable people such as these and as a result, changes are being put in place. In Brighton, our nursing team has a specialist liaison service with the general hospitals, a nurse practitioner works with GPs to assist them in accommodating people with learning disabilities, Health Action Plans are being implemented, and health education is being made available so that people can take more control of their own health.

There’s a long way to go but we have to stay on track, recession or no recession. Going back is not an option, really it isn’t.

Reference: Lee, J. and Conboy-Hill, 2010 S. ‘Specialist, palliative, and rehabilitative care for people with learning disabilities’. Clinical Psychology and People with Learning Disabilities. Vol 8, Nos 1&2. Pp 26-30. British Psychological Society, DCP Faculty of Learning Disabilities.

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