Yesterday I was invited to speak at the first North West neuromuscular conference, which was held in Manchester. I have been a member of the the all-party Group during the last Parliament, and I have been asked by Muscular Dystrophy Campaign, who support the work of the APPG to stand as the Lib Dem vice-Chair of the Group.
‘Muscle disease’ or ‘muscular dystrophy’ refer to conditions where sufferer’s muscles are progressively weakened, they experience defects in and death of muscle cells and sometimes skeletal weakness as well. There are many different types of muscular dystrophy that effect different muscles and more than 70,000 people in the UK have some type of muscle disease or related condition.
The severity of the muscle conditions can vary enormously. Children born with the more severe disorders can die at birth or in their first year of life while the mildest forms only slightly affect elderly people and have no life limiting impact.
Treatment for people with muscular dystrophy needs to be extremely specialised and can have an immeasurable impact upon people’s survival rate and quality of life.
Last year, the All Party Parliamentary Group for Muscular Dystrophy published the Walton Report, following an investigation into the provision of specialist care for people with muscular dystrophy.
Evidence taken by the inquiry suggested that the provision of specialised care is uneven around the country and that it is a lack of clarity of providing such care within the NHS.
Regional differences in the provision of care are also startling. A report by the Muscular Dystrophy Campaign showed that the median life expectancy for someone with Duchenne muscular dystrophy was only 18 years in some regions, while the figure for the Northeast was almost 30 years.
The All Party Group has been very active in highlighting the issues surrounding muscular dystrophy and the needs of patients, being one of the most active groups in Parliament. We have met with Specialised Commissioning Groups from around the country and discussed what measures can be taken to improve the lives of those with muscular dystrophy.
Read the Walton Report
Find out more about the Muscular Dystrophy Campaign