People with learning disabilities deserve joined-up medical care | Letters
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.
Becky Jenner
CEO, Rett UK