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.
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.
In a series of reports, we have joined forces with health professionals to set out a compelling case for improving neuromuscular services for patients with muscle-wasting conditions. It is unacceptable that many patients are not receiving good levels of care.
We published reports on access to physiotherapy which reveals that many people with muscle-wasting conditions are not receiving the specialist physiotherapy necessary to treat their condition.
The report draws on the views and experience of leading physiotherapists, patients and their families to set out a number of serious concerns regarding the provision of physiotherapy on the NHS for people 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.
We have published two reports to highlight the urgent need for improvements to wheelchair services:
- Get Moving – The case for effective wheelchair services (2010)
- Get Moving 2013 – The case for effective 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 and their families are often abandoned by the NHS and left to pay for these vital pieces of equipment themselves at a cost of several thousand pounds.
- Walton Report (All Party Parliamentary Group for Muscular Dystrophy, August 2009)
- Thomas Report (Welsh Assembly’s Cross Party Group on Muscular Dystrophy, July 2010)
- Mackie Report (Scottish Parliament’s Cross Party Group on Muscular Dystrophy, September 2010)
- McCollum Report (Northern Ireland Assembly’s All Party Group on Muscular Dystrophy, July 2012)
- Impact of NHS reforms on access to neuromuscular services (All Party Parliamentary Group for Muscular Dystrophy, March 2015)