A need for better muscle disease services in Wales

During the meeting we heard that there is no regional care advisor in Wales, despite some regions of England having up to five people in similar posts. This means there is no one to turn to for advice and support about equipment, home adaptations, care and financial issues.

It’s also worrying that some patients are waiting a huge amount of time for basic equipment such as wheelchairs and many end up buying these themselves, which cost thousands of pounds. We were told that one man has been sleeping in his wheelchair for 11 years because his family cannot find a suitable bed.

The meeting, chaired by Dr Dai Lloyd AM, was a chance for Welsh families living with muscle disease to give evidence about their experiences of health services. This evidence will be used to form the Cross Party Group’s thorough investigation of muscle disease services in Wales. This will also include recommendations for how services can be improved across Wales.

An announcement was made at the end of meeting that the report into muscle disease health services in Wales will be called the Thomas Report. This is in recognition of Ray Thomas from Neath, a dad who lost one of his sons to muscle disease and has spent over 30 years campaigning for better muscle disease health services. Over the coming months the Cross Party Group will be gathering evidence about muscle disease healthcare in Wales to produce their final report later in the year.

It is clear that Wales is lagging behind much of the UK in the specialist neuromuscular services it provides, and is the only country in the UK with no muscular dystrophy care advisor. It is vital to ensure that all patients across Wales have access to timely specialist diagnosis, assessment, treatment and on-going care. The level of specialist care in Wales is currently unacceptable and inadequate.

For more information about muscle disease and the Muscular Dystrophy Campaign go to www.muscular-dystrophy.org.