Services and care for Adults

As you enter adulthood, the amount of services for people with Duchenne appears to decline. From my own experience, the services became more disjointed and some elements of care lessened. I have found that Paediatric services were much more well rounded and encompassing than they are under Adult care. I feel that services for adults should be improved to match those you receive as a child, and this involves care such as physiotherapy and occupational therapy.

Before I turned 18, there was weekly access to physiotherapy, a regular review of either six monthly or yearly with a specific consultant, and easy access to a ward upon being admitted to hospital. This provided excellent coverage of my general health in most cases, even though I would occasionally scoff at the strange nature of review clinics as I saw them at the time. This has changed as I have moved into Adult care, following  a transition period of a few years during which time I saw the same paediatric consultant. Today, I find that the services which provide my care are more disjointed and more separate, and I feel that it could be beneficial to make them more cohesive. This may be a result of problems with funding or planning but I still feel things can be improved. Nonetheless, the level of care I receive is excellent, as are the doctors and others that administer that care.

I recently raised concerns with my health board via a letter in which I asked about creating combined services, providing better care plans and more physiotherapists for Duchenne patients. I have since had a reply which did give me some reassurance, but I am still left thinking that more can be done that would improve services and care for many people. It remains slightly odd to me that someone with a condition that worsens over time would receive less care as they got older.

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