How parliamentarians support us
We provide detailed briefings for our parliamentary supporters ahead of meetings, debates and questions. Parliamentarians in the Houses of Parliament, Scottish Parliament, Welsh Assembly and Northern Ireland Assembly support us in several ways. These include:
- meeting constituents with muscle-wasting conditions
- asking questions about access to neuromuscular services and treatments
- speaking in debates to highlight muscle-wasting conditions
- writing letters on behalf of constituents and Muscular Dystrophy UK
- supporting our cross party group activity
Getting in touch with parliamentarians
You can find your elected parliamentarians and their contact details using the lists and search functions:
- for MPs on the Parliament website
- for MSPs on the Scottish Parliament website
- for AMs on the Welsh Asssembly website
- for MLAs on the Northern Ireland Assembly website
Cross-party groups on muscular dystrophy
Muscular Dystrophy UK provides the organisational support for cross-party groups in the Houses of Parliament, Scottish Parliament, Welsh Assembly and Northern Ireland Assembly. This means that we set up meetings, propose activity for the groups and provide briefings for parliamentarians. Topics cover specialist care, accessing treatments and enabling independent living.
Access to specialist care
With our support, cross-party groups in all four countries have been investigating access to specialist neuromuscular care and social care across the UK. The five reports make recommendations about the action that is needed:
- to address the significant gaps in the provision of specialist neuromuscular care
- to implement service improvements.
You can read all six reports online:
- Walton Report (All Party Parliamentary Group for Muscular Dystrophy, August 2009)
- Thomas Report (Welsh Assembly’s Cross Party Group on Muscular Dystrophy, July 2010)
- Mackie Report (Scottish Parliament’s Cross Party Group on Muscular Dystrophy, September 2010)
- McCollum Report (Northern Ireland Assembly’s All Party Group on Muscular Dystrophy, July 2012)
- Impact of NHS reforms on access to neuromuscular services (All Party Parliamentary Group for Muscular Dystrophy, March 2015)
- Access to Psychological Support for People with a Neuromuscular Condition (All Party Parliamentary Group for Muscular Dystrophy, November 2018)
Fast Track – access to specialist treatments
Our Fast Track to treatments campaign presses for faster access to potential treatments for muscle-wasting conditions.
The All Party Parliamentary Group for Muscular Dystrophy’s Access to high cost drugs report was published in September 2013. We have enlisted our parliamentary supporters to highlight recommendations from this report calling for streamlined and innovative processes for assessing new treatments to reduce delays in patients accessing these treatments.
In April 2014, the All Party Parliamentary Group (APPG) for Muscular Dystrophy launched its report on Newborn screening for Duchenne muscular dystrophy.
We aimed to identify the barriers to a newborn screening programme and how these could be overcome, in the light of emerging treatments for the condition. There is now a focus on securing screening of other conditions including spinal muscular atrophy (SMA).
Screening has a crucial role to play in earlier diagnosis. It would enable children to access emerging treatments without delays. It would also allow families to plan and adapt for caring for a child with the condition.
If you would like any advice about our parliamentary activity or contacting your local MP, MSP, AM or MLA, please contact us on email@example.com.