Muscular Dystrophy UK comment for the Petitions Committee on Welsh Neuromuscular Services

March 2016

Muscular Dystrophy UK acknowledges the correspondence from the Health Boards to the Petitions Committee.

We welcome the recent investment in neuromuscular care advisor and specialist adult neuromuscular physiotherapy support, and we hope that the recruitment process for putting in place this investment is concluded swiftly. 

Muscular Dystrophy UK continues to reiterate key priorities for service development, which have been highlighted in some of the correspondence to the committee, including:

· additional neuromuscular consultant time

· specialist neuromuscular psychology support

· co-ordinated approach to bringing together the specialist multi-disciplinary elements of care for people with muscle-wasting conditions

Muscular Dystrophy UK would encourage Health Boards to actively engage with the Welsh Neuromuscular Network so that improvements can be implemented and co-ordinated on a consistent basis across Wales.

We remain particularly concerned by the continued vacancy of the South West Wales Neuromuscular Care Advisor post. Individuals and families have been struggling without this vital source of specialist care and support to turn to over the last few months, and this must be resolved as a matter of urgency.   

Muscular Dystrophy UK hopes that neuromuscular services can be considered as topic for a review by the Health and Social Care Committee at the earliest available opportunity.