A week of campaigning

It’s been a busy week here at the Muscular Dystrophy Campaign.  Last Friday, I was in Manchester for

North West Muscle Group Meeting

The Muscle Group with Graham Evans MP

our North West Muscle Group meeting.  We were pleased to be joined Sue Bell from the North West Specialised Commissioning Team, Fran Binici (Specialist Practitioner, Neuromuscular Services at the Manchester Children’s Hospital) and Graham Evans, MP for Weaver Vale. It was particularly good to hear Graham, who spoke passionately about his years campaigning for better NHS services for people with neuromuscular conditions after his cousin was diagnosed with Duchenne muscular dystrophy, and reaffirmed his commitment to continuing to push for better services as an MP.

On Tuesday, Nic and I went to meet the Specialised Commissioning Groups (SCGs) – along with Lyn, our Director of Education and Development – to talk about the progress they are making on the neuromuscular services work plan. This was a very positive meeting; all of the SCGs are making good progress with this work, including in developing a service specification which will set out what services patients with neuromuscular conditions should expect to receive across the country. The work is ongoing and we look forward to sharing further details later in the year.

Finally, on Wednesday I went along to a meeting at the Department of Health with a number of other charities. Professor Steve Field, Chair of the NHS Future Forum, was at the event. The NHS Future Forum is a group of clinicians, patient representatives voluntary sector representatives and others from the health field, including frontline staff. Earlier this year they reported back to the Prime Minister, Deputy Prime Minister and the Secretary of State for Health on the concerns and opinions they heard about changes to the NHS and will continue to look at a number of key areas of concern, including education and development. I raised the issue of the lack of training for specialist neuromuscular conditions and the problems many hospitals have filling vacant posts when a consultant moves on and we will continue to work to make sure the Future Forum addresses this issue.


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