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.
- Overstretched (2016)
- Focus on Physio (2008)
- Emergency care (2019)
- Mental Health (2018)
- Clinical Networks (2015)
- Hydrotherapy (2016)
- Respiratory care and cough assist machines (2015)
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:
- Get Moving – The case for effective wheelchair services (2010)
- Get Moving – The case for effective wheelchair services (2013)
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
- 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)
- Access to Psychological Support for People with a Neuromuscular Condition (All Party Parliamentary Group for Muscular Dystrophy, November 2018)