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Past policy reports

For over 60 years we’ve campaigned for people’s rights, better understanding, accessibility, and access to treatments for people with muscle wasting conditions. 

By gathering evidence from patients and clinicians on a national and local level, we’ve 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

Our series of State of the Nation patient survey reports 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. 

National Patient Survey (2013)

Unplanned hospital admissions of people with a muscle wasting condition and neuromuscular service audits

Building on the foundation: Invest to save improving services and reducing costs (2011)
Invest to save improving services and reducing costs in Wales (2011)
Invest to save improving services and reducing costs in Scotland (2011)
Re-audit on Unplanned Hospital Admissions in Patients with Neuromuscular Diseases (2017)
Setting the Standard: Audit of Services (2016)

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. 

Focus on physio (2008)
Give us a Break: Hospice and respite care for young disabled adults in Scotland (2008)
Managed clinical neuromuscular networks (2015)
Right to breathe: Access to respiratory care for people with a muscle-wasting conditions (2015)
Breaking point: The crisis in acessible housing and adaptations (2015)
Overstretched: Improving access to physiotherapy for people with muscle-wasting conditions (2016)
Hydrotherapy in the UK: The urgent need for increased access (2016)
Focus on disability benefits: Assessing the impact of Government reforms on independent living (June 2016)
End of the line 2016: Improving access to public transport for young disabled people (2016)
Missing out: The case for care advisor provision in London and the South East (2016)
Isolated and abandoned: The hidden impact of rare conditions (2016)
Access to psychological support for people with neuromuscular conditions (2018)
Ambulance action: Improving emergency care for people with muscle-wasting conditions (2019)
Ready and able: Removing the barriers that prevent young disabled people from finding employment (2019)
Below standard: MDUK's assessment of the benefits system (2020)

The cost of living with muscle disease

Our report on The Cost of Living with Muscle Disease 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 cost of living with muscle disease (2010)

The case for effective wheelchair services

We’ve 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. 

People 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. 

Get moving – the case for effective wheelchair services (2013)

Reports by our cross-party parliamentary groups

Cross-party support from parliamentarians across the UK is vital in our fight for improved neuromuscular services, faster access to treatments and enabling people with muscle wasting and weakening conditions to live independently.

All Party Parliamentary Group for Muscular Dystrophy

Walton Report (2009) Access to specialist neuromuscular care
Access to high-cost drugs for rare diseases (2014)
Impact of NHS reforms on access to neuromuscular services (2015)
Access to Psychological Support for People with a Neuromuscular Condition (2018)
Newborn Screening for Rare Conditions (2023)

Welsh Assembly’s Cross Party Group on Muscular Dystrophy

Thomas Report (2010)

Scottish Parliament’s Cross Party Group on Muscular Dystrophy

Mackie Report (2010)

Welsh Assembly’s Cross Party Group on Muscular Dystrophy

McCollom Report (2012)