Our policy statements

Assisted dying is an incredibly complex issue. People often have very strong and personal opinions about it and we know that within the muscle wasting and weakening community people will have a range of different views. At Muscular Dystrophy UK we are here to represent everyone in our community. We neither support nor oppose a change in the law. Our focus is ensuring that any debate and legislation considers the needs of people with muscle wasting and weakening conditions and safeguards them and those who care for them. We would never want anyone to feel pressured into making a decision. It’s essential that people with muscle wasting and weakening conditions receive the best possible care and support from both the NHS and the social care system regardless of their age, condition, or where they live.

Our latest Financial Insecurity report (2024) found over half of people living with muscle wasting and weakening conditions feel financially insecure. Our community often come up against barriers to accessing disability and other benefits. People with muscle wasting and weakening conditions also face limited employment opportunities. A combination of growing daily living costs, decreasing income from benefits and barriers to employment, can be a struggle to live with.

What we’re advocating on benefits:

• Increase the available income of people with muscle wasting and weakening conditions.
• Limit the number of benefit reviews for those with muscle wasting and weakening conditions.
• Wider changes to the social security system to better meet our community’s needs.

What we’re advocating for on employment:

• Ensure our community doesn’t feel at risk of losing their benefits.
• Improved employer understanding of disabled people’s needs.
• Implement flexible working practices.

To learn more, read the full policy statement.

We often hear how a lack of awareness can be a challenge when dealing with non-specialist healthcare professionals. Our last Community Survey found more than half (55%) had four or more meetings with healthcare professionals to get a diagnosis. Under half (47%) faced being misdiagnosed at some point and a significant number (69%) had to wait more than a year to receive a diagnosis. This is partly why 84% of our community think increasing awareness of muscle wasting and weakening conditions should be a key priority.

What we’re advocating for:

• We support calls from the wider rare disease sector for the UK Government to commit to building on the current UK Rare Diseases Framework and set new goals after the current Framework ends in 2025.
• We’re asking for greater investment in workforce education to provide non-neuromuscular specialist healthcare professionals with more time.
• We’re asking for greater collaboration with the NHS on rare condition alert cards.

To learn more, read the full policy statement.

We believe all people living with a muscle wasting and weakening condition should have access to high-quality care no matter where they live in the UK. Our last Community Survey found ‘access to healthcare’ was the second key policy priority area that mattered the most. Specifically, people living with muscle wasting and weakening conditions want more timely and equitable access to healthcare services. This will help reduce the existing postcode lottery in specialist care and ensure people have the support they need each day to feel good, both mentally and physically.

What we’re advocating for:

• The UK Government to create a sustainable funding settlement for the NHS, to ensure it’s appropriately resourced to deliver specialist health services.
• The UK Government should also better support NHS staff, including by expanding the workforce and addressing shortages in key specialisms, such as neuromuscular care advisors.
• Health commissioners and system leaders to adopt the principles of the newly published ‘Optimal clinical pathway for adults with Neuromuscular Disorders’. This will help improve the quality of neuromuscular services and drive better health outcomes.

To learn more, read the full policy statement.