New peer support network for people with a recent diagnosis

Published Date
23/04/2015
Author
Alexa Follen
Category
Campaigns

Muscular Dystrophy UK is pleased to announce that we are creating a new network of peer support volunteers. The network will provide support to people who have been recently diagnosed with a muscle-wasting condition, as well as their families.

The new network follows on from our recent survey which found that many people felt isolated after being given a diagnosis of a muscle-wasting condition. Within the survey people told us that one of the types of support they would benefit from around diagnosis was support from their peers.

These thoughts were echoed by Sulaiman Khan who has congenital muscular dystrophy and is from Woodford Green. In a recent blog post following a meeting about the new network in London, Sulaiman said:

We all underestimate the importance of emotional well-being to everyone, especially for those with disabilities and newly-diagnosed families, let alone those with a rare condition like muscular dystrophy or a neuromuscular condition. It is vital that newly-diagnosed families are able to access the emotional support they need.

We are working with neuromuscular centres and a group of more than 50 peer support volunteers to ensure that people are able to speak to others who have an understanding of having a muscle-wasting condition.

These volunteers will be available to provide emotional support following a recent diagnosis, and at any other stage in their journey. Volunteers will have a range of experiences and are living with a muscle-wasting condition themselves or are a parent or family member, and cover a wide range of conditions and ages.

To enable our volunteers to effectively support recently diagnosed families Muscular Dystrophy UK will ensure:

  • All peer support volunteers are professionally trained, enabling them to provide quality support.
  • People who are recently diagnosed with a muscle-wasting condition are matched up with a peer support volunteer who is in a similar position to themselves as we understand some people will not be ready to meet those who further progressed with their condition
  • Muscular Dystrophy UK and specialist neuromuscular centres are available to advise and give one-to-one support to the peer support volunteers

Rosanne Diaz, Care, Information and Advocacy Manager said:

We are regularly asked by people with muscle-wasting conditions that if at the time they are diagnosed with a muscle-wasting condition, they could be put in contact with someone who has experience of their situation. We are really pleased to be setting up this new network which we hope will now provide people with peer support that will benefit them.

So far we have had great meetings with health professionals and volunteers in London, Preston, Sheffield and Oxford to discuss creating the new network, with more meetings happening across the UK over the coming weeks.

We will soon be announcing details of our peer support volunteers, how people are able to get in touch with them, and how the project will work.

If you would like any more information or to get involved with the new peer support volunteer network then please do get in touch with Lloyd Tingley at l.tingley@musculardystrophyuk.org or on 02078034804.

Keep in touch