Below standard: our report on the benefits system

People living with muscle-wasting conditions are struggling to get the disability benefits they are entitled to, with many enduring financial hardship and unnecessary appeals.

Our ‘Below standard’ report, published today, highlights the difficulties some people face and makes a series of recommendations to improve the current system.

These include bettering assessors’ knowledge of muscle-wasting conditions and ensuring claimants are supported while appeal processes take place.

What are our findings?

Our report is based on an in-depth survey completed by 592 people living with muscle-wasting conditions. We found that:

  • More than half of respondents had to wait three months or more for a face-to-face assessment
  • More than half of respondents who went through the PIP appeals process had their decision overturned or an increased payment following an appeal
  • Two out of five had to wait more than six months for a PIP tribunal appeal
  • One in three reported financial difficulties when transferring to Universal Credit
  • A quarter found an assessment centre to be inaccessible

You can read the report in full here. And you can read more about people’s experiences of the benefits system.

What do we think?

We know many people aren’t receiving the benefits they are entitled to. As the charity for people with muscle-wasting conditions, we’re calling on the Government to involve us and other charities as it develops its disability strategy to help tackle this problem.

Rob Burley, Director of Campaigns, Care and Support at Muscular Dystrophy UK, says:

Financial support is crucial when you’re living with a muscle-wasting condition. But many people aren’t receiving the benefits they are entitled to and are struggling. Unclear forms, inaccurate assessments and unnecessary appeals all contribute to a stressful experience, affecting people’s mental health, quality of life and independence.


Assessors must recognise that muscle-wasting conditions are rare, often progressive and lifelong. We call on the Government to adopt our recommendations and make much-needed improvements to the current system.

How can we help?

And how can you get involved?

By sharing our report with your MP, you can help us bring this issue to Parliament and encourage the Government to involve us in its disability strategy. Our easy-to-use online campaigns tool, which you can find here, makes this easy to do.

If you feel comfortable doing so, you can also share your experiences of applying for benefits here.