South West Muscle Group
Improving neuromuscular services in the South West
The South West Muscle Group, from Plymouth to Gloucester, is pressing for the urgent and effective implementation of the South West Neuromuscular Strategy to ensure that everyone with muscular dystrophy or a related neuromuscular condition in the South West has access to specialist multi-disciplinary care.
The Group is also focusing on issue specific campaigns to ensure high quality in all aspects of care.
Details of the next South West Muscle Group meeting coming soon...
Join the fight - contact the Campaigns Team to join and find out more about the South West Muscle Group: 020 7803 2865 or campaigns@muscular-dystrophy.org
Get involved even if you can't come to Muscle Groups meetings
Current Campaigns
Find out about Access to Hydrotherapy in the South West in a new report published by the Muscle Group.
Read the Respite Care Manifesto which has been produced by the Muscle Group.
What was wrong in the South West?
The South West Muscle Group was launched in April 2008, following a shocking report by the Muscular Dystrophy Campaign revealing that there was no adult neuromuscular service in the South West, and that young men with Duchenne muscular dystrophy in the region are living up to 18 years of age in the South West, compared to a median age of death of 30 years in the North East.
Progress already made
In response to the report, the South West Specialised Commissioning Group worked with the Muscular Dystrophy Campaign to carry out a comprehensive review of neuromuscular services. In February 2009, following intensive campaigning by the Muscle Group, working with local clinicians and politicians, an investment of £1 million was announced into essential health services, including the recruitment of new clinical posts:
- 2 full-time adult consultants specialising in muscle disease
- 1 full-time paediatric consultant specialising in muscle disease
- 3.5 specialist physiotherapists
- 3 full-time care advisors (for children and adults)
- 1 psychologist
- respiratory and cardiac support
Two of the new Care Advisors are now in post, and recruitment is ongoing for the other posts, led by the new Neuromuscular Network Manager, Jennie Shine.
Plymouth Moor View MP, Alison Seabeck, has tabled an Early Day Motion in Parliament in support of the South West Muscle Group.
Putting on the Pressure - How you can help
The next steps in the fight are:
- Muscle Group members all over the region are continuing to research their local hydrotherapy and respite provision. Get in touch and tell us about your experiences of hydrotherapy and respite provision.
Action Points
Read the South West Muscle Group Winter Meeting Action Points from 6 March 2010
Read the South West Muscle Group Summer Meeting Minutes from 3 July 2010
