Today, Muscular Dystrophy UK are pleased to be attending the 25th anniversary European Neuromuscular Centre workshop. As part of the workshop we will co-chairing a session on the position of neuromuscular patients in shared decision making.
‘Shared decision making’ is a process where health professionals and patients collaborate to share the best available evidence that supports patients to make the best possible informed decisions on their care.
The workshop session, on the position of neuromuscular patients in shared decision making will be attended by leading health professionals from across Europe. The session aims to improve these decision-making processes available and better involve individuals and families in these. Representatives from the UK in attendance include:
- Dr Ros Quinlivan, Queen Square
- Professor Hanns Lochmuller, Newcastle University
- Pauline McCormack, Newcastle University
- Dr Nathalie Bere, EMA London
- Mark Chapman, DMD Pathfinders
- Annie Lennox, Myotubular Trust
It is hoped that this will lead to better outcomes in healthcare and support. A particular focus of the workshop is on diagnosis of conditions and effects on mental health and wellbeing, as well as new born screening. It is important to cover potential support and pathways now with screening programmes for Duchenne muscular dystrophy and spinal muscular atrophy on the horizon.
Specific goals of the workshop include:
- Improving information given to people with muscle-wasting conditions so that they are better informed
- Improving patient satisfaction in their treatment
- Improving overall quality of life, particularly reducing the potential psychological impacts of living with a muscle-wasting condition.
Following the two day workshop this week, Muscular Dystrophy UK will continue to collaborate with the European Neuromuscular Centre to:
- Create a white paper that will summarise discussion from the event and support organisations to share the best practice that is decided on locally
- Publish the workshops outcomes in relevant European neuromuscular journals
- Present the outcomes at various European conferences in the coming year
Taking part in this workshop session is part of Muscular Dystrophy UK’s Mental Health Matters project. The project has been created to ensure that individuals and families living with muscle-wasting conditions receive mental health and wellbeing support both from Muscular Dystrophy UK and the NHS.
To find out more about the European Neuromuscular Centre workshop or Muscular Dystrophy UK’s Mental Health Matters project please get in touch with our Campaigns team: campaigns@musculardystrophyuk.org