Every day counts when you’re living with a rare, progressive condition. At MDUK, we’re here for everyone living with a muscle-wasting condition, from diagnosis and through every life stage and changing need. And we connect people who live with muscle-wasting conditions with others who have similar experiences. We do this not only to create community, but also to connect people with others who understand what they’re going through.
Our peer support volunteers play an important role in helping people in our community not to feel isolated or alone, and in offering practical advice and support. If, for example, you’re struggling to navigate the benefits system and don’t know where to start, we can put you in touch with a peer support volunteer. Because they’ve been there before, they can help you prepare for what to expect and what to do. And if you just need someone to talk to, our peer support volunteers are there for you too.
We’re incredibly grateful to have these super volunteers complementing the work of our care, support and information team.
We’d like to introduce you to two of our peer support volunteers – Tiffany and Trevor – who share how and why they became involved, and what it means to them to offer this support within the MDUK community:
Tiffany Watson
I was born with malignant hyperthermia and central core disease (a muscle-wasting condition). Two years ago, I had the dreadful experience of having to convert my DLA to PIP. Having a disability is challenging in itself but adding in the fact that it’s rare and unknown adds a new level. They told me my condition didn't tick a box and so my fight began.
I was attending my yearly neurological appointments when my neuro-physiotherapist handed me a leaflet about a charity called Muscular Dystrophy UK (MDUK). She told me to ring them as soon as I got home, and from that day, I’ve never looked back.
MDUK was fantastic and the staff members were unbelievably brilliant at their jobs. They successfully guided me through the process, with letters, and took away all the stress from the previous months. My claim was accepted and from then I knew I wanted to give back to the charity for all they had done for me.
I became a "Friend of MDUK”, and then went to their yearly conferences. I have learnt so much from them and you get to see so many inspirational people. It's a very grounding experience.
I felt, though, that I had more to give, so I decided to become a peer support volunteer. The course for this was in London, far away from Poole in Dorset, where I live. I regularly attend hospital appointments in London, so it wasn't so alien! MDUK gave me so much confidence; I travelled alone from Poole to London, which entailed two taxis and two coaches. It was scary but I knew I could do it.
A year ago, I officially became a peer support volunteer and six months ago, I had my first person assigned to me.
The role gives me the chance to help people with my muscle-wasting condition talk to someone who totally understands how they feel. We all have different levels and stages of disability so it helps others to manage and accept what may lie ahead. I'm there to listen, if that's all that's required, or to help with information that I've used myself.
For example, information on certain websites, medical items that help, and a support blanket. I have always been very positive but even I have my wobbles (literally), so having someone there you can lean on is so rewarding and important, for people to stay strong in this day and age.
Having the role of peer support volunteer is so special to me as I know I can help and I feel good being able to help others. It gives me focus and a purpose in life. I have to be tough as I'm essential, and that feels good.
I'd never met anyone with my condition apart from my sister, who also had CCD but sadly passed away. So when I talk to another person with my condition, I get as much from it as they do.
Volunteering is something that is close to my heart and it’s my personal way of saying thank you to MDUK. I hope that by just giving back a few hours, it shows them my gratitude. I would encourage anyone to do this, as you don't need anything but an ear to listen. And that is the most important thing people need. Simple.
Trevor McLeese
I live in a village close to Stowmarket in Suffolk. For 27 years, I’d been living with what I thought was limb girdle muscular dystrophy, until I was diagnosed with Becker muscular dystrophy in September 2019.
I had a job where I communicated with people at all levels, and I wanted to help where I could. So I volunteered to become an MDUK peer support volunteer, and had my training in London in October 2019. I started to use an electric wheelchair in 2014 and in 2019 was provided with a drive-from-wheelchair WAV (wheelchair adapted vehicle) through Motability. It has meant that I can access the outside community, as living in a village the bus only runs twice a week. The vehicle gives me greater freedom.
I felt I could help others in some way by sharing my life experiences of living with muscular dystrophy. I am also a volunteer Public Governor at Royal Papworth Hospital and want to give something back to the NHS, as I have relied on the NHS all my life with initially severe asthma, then muscular dystrophy and later other heart issues.
In the same way, MDUK has supported me since I became a member several years ago. To give something back also gives me a sense of worth that I can make a difference to others, and learn more about life experiences.
Being a peer support volunteer is an opportunity to help others with muscular dystrophy, to share experiences and help by giving a good listening ear and understanding of problems, with empathy, and it’s a challenge to help solve issues.
This volunteering role is a very important one, probably more so in the pandemic when we all need support, both physically and mentally, to cope with the situation and life. Going forward, it will continue to offer support and a view from another aspect and person. Working with MDUK, we’re able to help and get a better outcome for those living with this horrible condition that affects our lives.
As a peer support volunteer, you get a sense of worth that you can make a difference in others’ lives. At the same time, your own life is enriched and you gain confidence to take on other life challenges. You’re not only helping the other person but also supporting your own sense of achievement and broadening your understanding of the issues of living with muscular dystrophy.