I contacted the helpline a couple of years ago, before I worked here, about my housing situation. I was in the exciting, but daunting, process of moving out of my family’s home to live independently.
The challenges felt like being in a maze, but I called the helpline and they answered so many of my questions and supported me through the process.
Last summer, I felt like I was settled and doing well for the first time in my life. So, I thought I'd put my knowledge and experiences of what it can be like living with muscular dystrophy and going through challenging situations to support others.
Working at Muscular Dystrophy UK has changed my life.
It's such a rewarding job when you get to see a positive change in someone's life and know you've contributed to that.
The helpline team are the first point of contact
I always tell people that the helpline team are the first point of contact when someone needs support. Whether that involves providing emotional support following a diagnosis or sending out condition alert cards.
The most common enquiries we’re currently receiving are about housing. We also get a lot of benefit-related requests from people seeking support with Personal Independence Payments (PIP). When situations become challenging our team can help by providing tailored support through our advocacy service.
It's always lovely when someone we’ve helped gets back in touch and says, “we’ve been awarded the benefit we’re entitled to,” or “we finally received the funding we need to complete the adaptions to our house.”
Our helpline is a lifeline
A large part of what we provide is emotional support. We sometimes hear from people who are in distress or going through a difficult time and often aren’t sure where to turn. It’s not uncommon for some people to have no support system around them, so they come to us. Even if all we can do is listen and be there for them in that moment to support people through those difficult times, that’s enough.
Sometimes people call our helpline following a bereavement, this phone call is often the first time they have talked out loud about their grief. Most of the time they aren’t looking for practical advice, but to have someone to listen to them during a time of great difficulty.
We can hear the relief in someone's voice when in that moment, they got what they needed from speaking to us.
A lot of the people who get in touch with us can feel isolated. It’s sometimes easier to talk to our helpline team then it is to their family and friends. For many, the helpline is the place where they can speak freely and not worry about being judged by what they’re saying.
Taking the pressure away
So many services have become stretched since the pandemic. It’s harder than ever for people living with muscle-wasting and weakening conditions to get the care and support they need without facing barriers. We know it can be exhausting. Our helpline team are here to support and take some of that pressure away.
“It really puts my mind at ease knowing I’m not doing this alone.”
Lauren has recently helped Sarah, 33, who has Bethlem Myophathy with her PIP renewal. Sarah said:
“The whole PIP process causes me so much stress and anxiety. I rely on the money for my car; I can’t get to work, or anywhere really without it. So not knowing if my renewal is going to be successful year on year is a horrible feeling.
“Lauren’s been amazing. She’s helped me fill in the lengthy application form. I always worry that I’m not writing enough, but chatting to her reminds me of the things I need to include that I would otherwise forget. She checks in with me regularly to see how the process is moving along. It really puts my mind at ease knowing I’m not doing this alone. That someone is always there to support me when I need it.”
If you are finding things difficult, please contact our helpline. We are here to listen and support you.
Contact our helpline on 0800 652 6352 or info@musculardystrophyuk.org.