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Project information

Mental Health Matters

Living with, or living with someone who has, muscular dystrophy can cause deep distress and trauma, for which there is cruelly little support. Our Mental Health Matters programme will provide direct support to people affected and ensure more adequate help is available through the NHS.


Charity information: Muscular Dystrophy UK

Muscular Dystrophy UK logo
  • Need


    Living with a condition that is taking away one’s mobility and reducing one’s life expectancy, or watching one’s child gradually lose the muscle that powers their very heartbeats, can cause profound emotional trauma. Last year Muscular Dystrophy UK surveyed over 700 people living with muscle-wasting conditions and found that depression, anxiety and suicidal feelings were alarmingly widespread. Fewer than a third of respondents had been offered any form of psychological support.


    We will address the lack of specialised counselling by employing a counsellor, we will provide a network of clinic-based advocacy and outreach support, produce literature to give valuable advice and fund peer support groups for families. We have set up an expert steering group comprising consultant neurologists, care advisors, psychologists, palliative care specialists and neuromuscular patients which has established priorities for the programme and will continue to provide guidance

  • Aims

    Aim 1

    To improve psychological support for people with muscle wasting conditions directly and via the NHS


    » We will employ a psychological counsellor to support those individuals, and their families, facing serious psychological difficulties.
    » We will fund a network of clinic-based advocacy and outreach roles across the UK to offer emotional support to distressed individuals and families
    » Upskill and support NHS professionals to meet the emotional needs of those living with muscle-wasting conditions more fully.
    » Run events for families, children and adults, including opportunities for both professional and peer support to encourage fun and well-being.

    What success will look like

    We will repeat our survey to assess improvement in people's emotional wellbeing and access to psychological support. We will work with psychologists to collect further evidence.

  • Impact


    Currently, less than a third of 700 people surveyed by the charity have been offered any form of mental health support. Our programme will ensure more adequate and effective support is available and easily accessible, and that those needing it are signposted clearly. As a result, people living with a muscle-wasting condition will experience less distress and be able to lead happier, more fulfilling and satisfying lives.


    A risk with this project is that those that really need the psychological support do not know where to find it when they need it most. This risk will be dealt with by effective communication and our clinic based teams being proactive at point of diagnosis and during subsequent appointments. New literature and information packs will be produced to promote this new service at clinic and at charity events. Our helpline team will be retrained to enable them to identify when someone is in need.


    Donors to this project will receive a bi-annual update detailing the number of patients using the service and any amendments that will be made as the new project is rolled out.

  • Budget

    Budget - Project Cost: £333,423

    Loading graph....
      Amount Heading Description
      £55,423 Counsellor In house counsellor at MDUK Year 1
      £106,000 Six Clinic roles 50% of costs for in-clinic roles
      £60,000 Helpline 30% of helpline costs - one year
      £82,000 Healthcare professionals Training module for healthcare professionals - year one
      £30,000 Family Fun and Support Events Year one costs of 6 workshops

    Current Funding / Pledges

    Source Amount
    Major Donor £30,000 Guaranteed
    Trust £10,000 Guaranteed
    Corporate £70,000 Guaranteed
    Trust £9,000 Guaranteed
  • Background


    This is a UK wide project. Our helpline is available throughout the UK so this audience will have access to the new counsellor via the telephone. Our clinic based roles will be at six established muscle centres across the UK, in London, Oxford, Newcastle, Northern Ireland, Scotland and Wales. Our family support days will be nationwide, with the proposal being that they are held in London, Chester, Belfast, Scotland (tbc), Oswestry, Preston, Cardiff


    At least a third of the UK's more than 70,000 Individuals or families living with a muscle wasting condition stand to benefit from this programme.
    We will support both people who are in contact with the charity already or and those who are newly put into contact with the charity at their muscle clinic.

  • Why Us?

    Why Us?

    We are experts in muscle-wasting conditions and their shattering impact on people's lives. Our information and advocacy team are already a vital resource for those we support. We consider wider determinants of mental health including housing, education, social, and financial . We focus on promoting wellbeing, community-based care and activating communities, improving clinical and care services and improving recovery. Our close relationships with clinicians help us reach people in need UK-wide

    Read more about the Charity running this project.


    Nic Bungay

    Our Director of Campaigns, Care and Advocacy will oversee the delivery of this project through his experienced and high-calibre Directorate members.