Supporting people, from the moment of diagnosis, to be understood and never alone.
Living with a rare, progressive muscle-wasting condition can be challenging. But when you’re denied – or not offered – basic support, for simple things like emotional wellbeing, it can leave you feeling isolated and alone. And that’s hard.
Long-term prognosis is improving and there are exciting treatments on the horizon. But muscular dystrophy and its wide-ranging impact can affect every area of life, including mental health. If left unsupported, these negative experiences can have a detrimental effect and can ultimately lead to devastating consequences.
Professional psychological support is essential to improve emotional wellbeing. It doesn’t make sense for this support to be forgotten and ignored. But we know this is happening, leaving many out in the cold to support themselves or seek information from non-professional sources including the internet.
Pushing for access to specialist psychological care and support from the moment of diagnosis to end-of-life, Here for you: Mental health matters is our commitment to making tangible changes to the current offering for all individuals and families living with a muscle-wasting condition.
We will be investing in better support for individuals and families, better support and training for healthcare professionals and putting pressure on the Government for NHS improvements.
There are many stages from the moment of a suspected diagnosis where you, and those around you, may experience devastation and loss. There will also be times when you will have to make some difficult decisions about your life. All of these moments can weigh heavily on your mental health.
By investing in Mental health matters, we want to make sure that you feel understood and never alone, because we believe you have the right to live your life to the fullest.
Having a son diagnosed with Duchenne is one of the most devastating things you can be told. Psychological support keeps you focused. It stops you going into that dark place. I had to really hunt for that psychological support – I knew I needed the help and so did my family. But once you’ve done that, it helps hugely.”
Louisa Hill, Muscular Dystrophy UK Trustee and mum of Archie (11), who has Duchenne muscular dystrophy
There are six streams of work included within this programme:
- setting up an expert working group to ensure that access to psychological support is addressed
- holding a psychological support workshop to share learning and experience on a European level
- developing free information resources and support for individuals and the wider family, including siblings, partners and parents
- providing resources, better support and training for healthcare professionals to improve knowledge. Additionally, ensuring the NHS provides the right support for every individual or family receiving a diagnosis at a muscle centre or clinic
- influencing Government strategies – rare disease, mental health and suicide prevention – to meet the needs of individuals and families with rare, long-term and progressive conditions, ensuring they do not fall through the emotional safety net
- working in partnership with Professor David Abbott, and other Duchenne charities, to review and address the needs of adults with Duchenne, including end-of-life decisions.
• The new expert working group will bring together clinicians, care advisors and psychologists, as well as parents, young people and adults living with the condition.
• The European workshop will be held at the European Neuromuscular Centre (ENMC) with experts from across Europe.
• Reviewing the needs of adults with Duchenne will see the collaboration of researchers, patient groups, healthcare professionals and adults living with the condition.