As CEO of the national charity Rett UK, which supports families affected by the rare and devastating neurological disorder Rett syndrome, and mum to 24-year-old Rosie who has Rett syndrome, I fully support the case for learning disabilities doctors (Letters, 27 July). Hospital admissions are extremely stressful for people with complex needs and their families. When you are dealing with a disorder like Rett syndrome, invariably the GP has never heard of it; a paediatrician may recall reading about it in a textbook. Wikipedia seems to be their preferred choice for a quick whistle-stop tour – about as helpful as a chocolate teapot. The parent has to become the expert.
Once young people leave the relative comfort of children’s services where their care is overseen by a specialist community paediatrician, their care is transferred to their GP. The GP will have had very little to do with this young person up to this point. Transition still remains hugely problematic – often described by families as a “cliff edge”. This is largely because the key missing piece in the jigsaw is one person who will take the lead in providing holistic, coordinated care and treatment. A learning disability doctor is that person. Someone who has had the training, has the interest and motivation to champion the care for people with learning disabilities. Someone who understands that you cannot treat one area in isolation without having an understanding of how it can impact on other co-morbidities.
CEO, Rett UK
• It is important to recognise the complex physical health problems experienced by people with learning disabilities. It is heartbreaking to read the stories of what led to their deaths. Why are there so many avoidable deaths from constipation? Why are people bouncing in and out of hospital with recurrent pneumonia? Why are people not receiving a flu jab despite their risks of respiratory infection? Why do swallowing problems go unrecognised?
The care of these problems is left to GPs. However, primary care is under intense pressure. GPs always intend to provide excellent care but most have had little training in learning disability. The chances of your care being managed by the same GP has fallen markedly over the last decade. Imagine being the learning disabled patient with complex problems such as communication problems, visual disability, swallowing difficulty, mobility problems, constipation, epilepsy and recurrent aspiration pneumonia. A specialist physician in learning disability would assist shared understanding, manage complex medication interactions and support the person and family in the maze of medical management; and, importantly, be a support to primary care in both training and research development.
Dr Kirsten Lamb
Chair, GP learning disability special interest group