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.
DMD and Me 