People with muscle-wasting conditions and their families are being failed by lack of access to specialist mental health support according to a new Parliamentary report.
The report, published by the All Party Parliamentary Group (APPG) for Muscular Dystrophy, calls on the Government, NHS England and others to take immediate action to ensure specialist support is available at the point of diagnosis and beyond.
Families, health professionals and MPs have gathered in Parliament to throw their weight behind the report and show their support for better, more tailored mental health services.
The emotional impact of living with muscular dystrophy
Being diagnosed with a muscle-wasting condition means adjusting to a new and unexpected reality.
Lizzie Deeble, whose son Sebastian has Duchenne muscular dystrophy, says there was no support available to help her family deal with the emotional impact of Sebastian’s diagnosis.
Gaps in mental health services
Lizzie was one of a number of people, including parents, people with muscle wasting conditions, health professionals and NHS England representatives, who gave evidence to the APPG for Muscular Dystrophy during a 9-month long inquiry.
Muscular Dystrophy UK supports the recommended actions in the report, which urge:
- Increased clinical psychologist time dedicated to patients
- Regular screening for mental health problems at key life stages from diagnosis onwards
- The integration of clinical psychologists in all multi-disciplinary teams with urgent resourcing of centres that lack such roles
- Innovative ways of providing appropriate psychological support through greater use of face-to-face digital technology such as Skype, and within the local community.
Catherine Woodhead, Muscular Dystrophy UK CEO, said:
“This report shows just how important it is for better recognition and provision of specialist mental health support for all family members who are likely to be affected by the impact of muscle-wasting conditions.”
To join our mental health matters campaign and help make a difference go to: www.musculardystrophyuk.org/mental-health-matters
If you are affected by a muscle wasting condition and would like to talk to someone about the help you need please call our Helpline for free on 0800 652 6352 or email us at firstname.lastname@example.org You can also contact the Samaritans who offer a safe place for you to talk any time you like, in your own way, simply call 116 123.
Every day counts when you’re living with a rare and often life-limiting muscle-wasting condition. You can often feel isolated and alone. At Muscular Dystrophy UK, we won’t stop until people get the support they need to help them live well with their condition.