Our reports

By gathering evidence from patients and clinicians on a national and local level, we are been able to highlight gaps in essential care and services. Together with families and individuals, we campaign for improvements to essential health services.

National Patient Surveys - revealing the state of care and support

The series of State of the Nation patient survey reports by Muscular Dystrophy UK has revealed major gaps in the provision and quality of care and support for people with muscle-wasting conditions.

We found that too many patients are still struggling to access the specialist care and support they need to manage their conditions and improve their quality of life.

Reports on unplanned hospital admissions of people with a muscle-wasting condition and neuromuscular service audits 

Access to different aspects of care

We have published reports on access to physiotherapy, emergency care, mental health, the need for clinical networks, hydrotherapy and respiratory care.

The cost of living with muscle-wasting conditions

We published a report on the cost of living with muscle disease which revealed that many patients and their families living with muscle-wasting conditions face extreme financial hardship due to the additional costs associated with these conditions.

The financial strain placed on people might be felt due to very expensive wheelchairs, costly home adaptations, or essential equipment such as hoists and specialist beds. It is vital for local and national decision-makers to take this into consideration.

The case for effective wheelchair services

We have published two reports to highlight the urgent need for improvements to wheelchair services:

These reports show that across England too many people are forced to wait far too long for the electric wheelchairs they need while others are denied essential features that aid independence and improve quality of life.

Patients with a muscle-wasting condition are often abandoned by the NHS and left to pay for these vital pieces of equipment themselves at a cost of several thousand pounds.

Reports by our cross-party parliamentary groups