Background to the campaign

Muscular Dystrophy UK’s Focus on Disability Benefits campaign aims to ensure that people with muscle-wasting conditions can get the support they need and are entitled to.

Our Focus on Disability Benefits report published in June 2016, compiled following an extensive survey of people affected by muscle-wasting conditions, revealed a series of failures and inconsistencies.

Muscular Dystrophy UK’s survey found that:

  • Nearly a third of people with muscle-wasting conditions have encountered financial hardship due to delays in receiving a disability benefit.
  • Two in five respondents had an assessment at a centre that was not accessible.
  • One in three individuals with muscle-wasting conditions did not feel they had been treated with respect and their needs had not been taken into account.
  • Two in five respondents experienced delays, cancellations and a lengthy time spent waiting for the verdict.

Muscular Dystrophy UK is a member of the Disability Benefits Consortium, which is a coalition of over 80 different charities and organisations committed to working towards a fair benefits system.

Difficulties in accessing disability benefits

Changes from the Disability Living Allowance (DLA) to Personal Independence Payments (PIP) have caused stress and anxiety to applicants, primarily due to the changes in the mobility criteria and a lack of knowledge of muscular dystrophy and neuromuscular conditions amongst many assessors resulting in inaccurate assessments and decisions needing to be appealed.

Muscular Dystrophy UK’s advocacy service has supported many individuals who are having their Motability vehicles taken away. These individuals were on higher rate mobility for DLA but failed to meet the tougher criteria to qualify for an enhanced rate mobility award under PIP.

Campaigning in Parliament

Our MP and Peer supporters continue to press the Government to improve access to PIP and other benefits through parliamentary questions on several issues including:

  • the decision to move the mobility criteria under PIP from 50 metres to 20 metres;
  • lack of understanding and knowledge about long-term and progressive conditions such as muscular dystrophy;
  • long waiting times for appeals to be heard;
  • ending unnecessary reviews for people with long-term and progressive conditions.

Progress made

The Government announced in June 2018 that new guidance coming into effect this summer means people who are awarded the highest level of support (the enhanced rate) under PIP, and where their needs are expected to stay the same or increase, will receive an ongoing award of PIP with a ‘light touch’ review every 10 years.

The change will mean that those with severe or progressive conditions should receive an award which reflects the fact that their condition will not improve.

We have also been trying to educate the assessment providers through a ‘condition insight report’ to improve assessors’ knowledge of muscular dystrophy and neuromuscular conditions. We have received feedback that this information has been helpful in terms of the variability of the condition to carry out an ‘activity’ and the significant fatigue this can cause.

How you can get involved

You can write to your MP or book a meeting at your MP’s advice surgery to tell them about your experiences with the application and assessment process for PIP so that they can raise awareness of the issues and call for improvements to the system.

Contact us for support and information

For more information about Personal Independence Payments and for free support to ensure you’re accessing the benefits you’re entitled to receive, you can contact our Freephone helpline on 0800 652 6352 or email

For more information on our Focus on Disability Benefits campaign, please contact Clare Lucas on or call 020 7803 4838.

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