Muscular Dystrophy UK's helpline has supported its 1,000th caller this year, providing a vital lifeline for the UK’s 70,000 people with muscle-wasting conditions.
The dedicated team has decades of experience and can assist with benefit application requests, writing supporting letters when challenging decisions, and offering advice to anyone living with or affected by a muscle-wasting condition.
Ines, aged 34 and from London, knows all too well how supportive the helpline can be – especially when times get tough.
She was one of the first people to get in touch after MDUK received its 1,000th call for help this year.
Ines lives with Myasthenia Gravis (MG), an autoimmune condition that causes weakness and excessive fatigue in the muscles of the limbs, face, eyes, throat, as well as muscles used for breathing. Symptoms vary day to day and from person to person.
Why did she ring?
Ines phoned the care and support team in desperation following the devastating news that her Personal Independent Payment (PIP) was being stopped with immediate effect.
PIP is a cash payment awarded on a points-based system that replaces the Disability Living Allowance and is a lifeline for many. It is intended to help adults with the extra costs of living with a long-term health condition or disability.
People have to undergo a review once their award period runs out, at which point their needs are reassessed. Ines was reassessed at the start of 2020.
Unbeknownst to Ines, she received 0 points for both the daily living component and mobility component of PIP in her reassessment, meaning she was entitled to absolutely nothing.
Ines said:
I felt really frustrated and upset because the reasons they said I wasn’t eligible for PIP are not true. For me that is the most upsetting thing. Mentally I have been exhausted, and I was made redundant last month so I am really struggling for money. I was desperate for help which is why I got in touch.
How did the support team help?
After contacting MDUK’s support team, Ines was talked through the mandatory reconsideration process. Staff also sent a consent form and wrote a supporting letter explaining Ines’ condition to challenge the decision.
She said:
The support team were exceptionally kind and professional. Everything was brilliant. The most touching thing was that I was given the time to explain myself and my situation. For the first time, someone who didn’t know me seemed to understand what I am going through. People doubt my condition a lot because it often appears invisible.
Even if I don’t win on the appeal, it was so touching to feel listened to and believed for the first time. That really made me feel like I was being heard, and that was captured in the letter that was written for me.
Ines’ documents were sent off to the DWP in mid-October and she is awaiting their decision.
I hope I don’t have to use the helpline service again but it’s amazing to know that if I need you, you’re there. It makes a huge difference. When I read my letter, it was so well put and clear. It had everything in there. Even if the answer is not positive, MDUK did its part and for me that counts for a lot.
She added:
I’m just trying to live my life. I’m trying to work and be independent. Why don’t I have the same rights? Why can’t I be supported just to make it a bit easier for me?
Our friendly care and support team is here for you, with free information and emotional support. They are great listeners. And even though they aren’t trained counsellors or doctors, if they can’t help you themselves they usually know who can.
Our helpline is open from Monday to Friday, 10am to 2pm. We’ve had to reduce the hours now that we’re in another national lockdown, to make sure our team can continue to support callers in a confidential environment.
If you call and the team is unable to answer your call, they will pick up voice messages. Leave your name and number and one of our team will get back to you when they can, even if it’s outside of those hours. Otherwise you can always email us at info@musculardystrophyuk.org and we will get back to you as soon as we can.
They can be reached, for free, on 0800 652 6352 or via email on info@musculardystrophyuk.org