Parliamentary activity across the UK

We greatly value cross-party support from parliamentarians across the UK. This is vital in our fight for improved neuromuscular services, faster access to treatments and enabling people with muscle-wasting conditions to live independently.

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:

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 five reports online:

Fast Forward – access to specialist treatments

Our Fast Forward 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.

Newborn screening

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.

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.

Any questions?

If you would like any advice about our parliamentary activity or contacting your local MP, MSP, AM or MLA, please contact Jonathan Kingsley, Parliamentary and Policy Manager, on j.kingsley@musculardystrophyuk.org or call 020 7803 4839.

Keep in touch