We’re pleased to announce that Muscular Dystrophy UK will be holding a consultation event on Friday 27th April 2018 at the Eaton Hotel in Birmingham to hear your views on psychological support for people with muscle-wasting conditions.
The consultation event is part of our Mental Health Matters project. The campaign has been set up to ensure that individuals and families affected by muscle-wasting conditions receive better support with their mental health.
Your views will help inform the ongoing parliamentary inquiry held by the All Party Parliamentary Parliamentary Group for Muscular Dystrophy into psychological support for people with muscle-wasting conditions.
The inquiry will also look at how we can ensure families receive the support they need in relation to any newborn screening programme.
As part of our Mental Health Matters campaign Muscular Dystrophy UK will also be undertaking the following programme of activities:
- From Spring 2018: two residential camps for people aged 18 – 25 focussed on peer and psychological support
- From Spring 2018: Three muscle group meetings a year in partnership with a specialist psychologist
- From Summer 2018: family fun and support days to help parents and their children meet others and have a fun day out
- Autumn 2018: a new training course for community psychologists will be launched to improve knowledge of the conditions
- Autumn 2018: a training event for care advisors and clinical nurse specialists to improve the psychological support they can offer
Louisa Hill, Muscular Dystrophy UK Trustee and mum of Archie (12), who has Duchenne muscular dystrophy, said:
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.
Full details of the event are available here.
If you would like to attend our consultation event or find out more about Mental Health Matters campaign then please get in touch with our campaigns team at campaigns@musculardystrophyuk.org or on 020 7803 4826.