Charity Champion award winner Baroness Thomas writes about her work with the Muscular Dystrophy Campaign.
I count myself as incredibly lucky to have met so many inspiring families across the country living with muscular dystrophy – particularly boys and young men with Duchenne MD. But all too often those living with life limiting conditions continue to go without essential specialist care that not only improves quality of life, but extends life as well. I have been involved in a campaign to try to ensure that all vulnerable families living with muscle wasting conditions are able to access the care and support they so desperately need on the NHS.
By holding inquiry sessions of the All Party Parliamentary Group for muscular dystrophy, we have been able to bring NHS Directors together with people living with the condition to find out what steps are being taken to address the sometimes shocking gaps. I’m not the only person living with muscular dystrophy who is often frustrated at hearing so much NHS jargon – reviews, strategies, pathways – when what we want is action! But things are beginning to look up.
Two years ago there were only 13 Neuromuscular Care Advisors to support 70,000 patients and families. Thanks to our campaigning work with the Muscular Dystrophy Campaign, there are now 31 NHS funded Neuromuscular Care Advisors – a number set to grow even more as other parts of the country begin to understand the importance of these roles. People with muscle wasting conditions require support from a wide range of professionals working as part of a multi-disciplinary team. This is why I am pleased that Department of Health has now launched the first ever national neuromuscular workplan on neuromuscular services – looking at access to equipment, genetic testing, unplanned hospital admissions and respiratory services.
This is a good start – but there is still more work to do, especially given the current challenges of NHS reform and the need for efficiency savings. I just hope the Health Champion Award from Dods - for which I am very grateful - will help raise the profile of the campaign and spread the word amongst MPs and Peers. This is so important, as together we might be able to make a real difference.