New vision for neuromuscular services in Wales

Today we have a guest blog from our new Campaigns Intern, Adam Gilbert, who reflects on our Cross Party Group on Muscular Dystrophy meeting earlier this week:

“There is a tradition of judging U.S. Presidents on their first 100 days in office – my first ten days as Campaigns intern at the Muscular Dystrophy Campaign have at times felt as hectic as a newly elected president acquainting themselves to the unknown, through phone calls to politicians and policy areas that I have never before experienced.

My first meeting was the Cross Party Group on Muscular Dystrophy at the Welsh Assembly on Tuesday.

The first thing that struck me at the meeting was the large turnout of the Wales Muscle Group. Members had travelled from all over South Wales – yet this was no surprise when I met them. They had come so far in fighting for better services that a small journey wasn’t going to hold them back. For example in their 40 year history the South West Wales Branch has raised over a million pounds for the charity and they really are super campaigners.

The meeting was chaired by Mark Isherwood, Assembly Member for the North Wales region. He was joined at the top table by Dr Andrew Goodall, Chief Executive of Aneurin Bevan Health Board and lead Health Board Chief Executive for developing neuromuscular services, and Dr Gareth Llewelyn, Consultant Neurologist.

The Wales Muscular Dystrophy Network had produced an impressive report outlining several recommendations for improving specialist neuromuscular care in Wales. These included reducing the number of unplanned emergency admissions to hospital for people with muscle wasting conditions, a costly and often avoidable occurrence. On the issue of improving the knowledge of neuromuscular conditions at primary level, Dr Llewelyn spoke about how traditionally neurology is an under-taught subject in Medical School, and because of this Cardiff University has increased the amount of time they spend on neurology training.

The campaigners in attendance raised a number of issues that could be added to the report. Many spoke of the lack of hydrotherapy available, and from the conversation that followed it became apparent that although not enough, there were hydrotherapy pools in existence – the problem actually lay with getting access to these facilities. For example health and safety means there has to be a lifeguard present. An idea raised here was possibility of volunteers manning the pool to widen the access hours.  Campaigners raised other issues including health psychology and we had a discussion on Work Capability Assessment, after which Mark Isherwood pointed them in the direction of an on-going UK review chaired by Professor Harrington.

The whole meeting was an example of how the local campaign groups take the narrative for themselves, raising the issues that affect them personally.

Over the next couple of weeks, there is further activity in the devolved parliaments and assemblies. The Cross Party Group on Muscular Dystrophy in the Scottish Parliament is meeting on Wednesday 31st October where there is a focus on self-directed support Bill currently going through the Scottish Parliament. On 5th November in the Northern Ireland Assembly the MLAs are debating the findings of the McCollum Report following a motion put forward by the Health Committee.

It is clear that the local campaigners all over the UK are at the heart of the Muscular Dystrophy Campaign’s fight against muscle wasting conditions.”


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