Muscular Dystrophy UK

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.

history Campaign has now closed

It ran from 12:00 PM, 27 November 2018 to 12:00 PM, 4 December 2018

open_in_new https://www.musculardystrophyuk.org/

Registered Charity in England and Wales (205395)

Check mark Match funded

Campaign target

£45,000

Amount raised

£82,357

Donations

32

    Category

    Helping

Location

  • My son Harry is 8 years old and has Duchenne muscular dystrophy, in the last 6-12 months he has become more aware of his condition and the fact he is getting much slower than his friends. He asks some tough questions such as: ‚ÄúWhy me? I hate my legs. When will I be in a wheelchair?

    — Sue Barnley whose son Harry (8) has Duchenne muscular dystrophy

  • Harry has just started seeing a local Chartered Clinical Psychologist, and his first visit was really hopeful. He spoke to her about the condition and told her some of his fears. She spoke to him using the right language and tackled the subject head on

    — Sue Barnley whose son Harry (8) has Duchenne muscular dystrophy

  • My son Harry is 8 years old and has Duchenne muscular dystrophy, in the last 6-12 months he has become more aware of his condition and the fact he is getting much slower than his friends. He asks some tough questions such as: “Why me? I hate my legs. When will I be in a wheelchair?

    — Sue Barnley whose son Harry (8) has Duchenne muscular dystrophy

  • Harry has just started seeing a local Chartered Clinical Psychologist, and his first visit was really hopeful. He spoke to her about the condition and told her some of his fears. She spoke to him using the right language and tackled the subject head on

    — Sue Barnley whose son Harry (8) has Duchenne muscular dystrophy

Situation

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.

Solution

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