Kerry Brett, 56, from Porthcawl, has Facioscapulohumeral muscular dystrophy, which affects between 2,000 and 2,500 people in the UK. He contacted our Advocacy services after having his application for Employment Support Allowance (ESA) refused in April 2017.
He said:
“My advocacy officer was just incredible. She wrote letters, helped to gather extra evidence for my case, and supported me throughout the entire process.
“Because there were so many delays, it went on for 17 months, but she helped me through all of it and eventually my case went to appeal. It was nerve-wracking, but she came with me for emotional support. I think it meant as much to her as it did to me when my appeal was granted and they backdated the payments.
“I was lucky to have found out about Muscular Dystrophy UK. After my original application, I went on to the website and saw they offered advocacy support. I would 100% recommend this service – without it I still wouldn’t be getting ESA. I just want other people to know about it so they can help them as much as they’ve helped me.”
If you have a muscle-wasting condition having access to the right information and advice can help to make all the difference. At Muscular Dystrophy UK, our Information, Advocacy and Care team are here to support you further. You can speak to one our team by contacting the Muscular Dystrophy UK helpline on 0800 652 6352 or by emailing info@musculardystrophyuk.org.
You can find out more about the Information, Advocacy and Care team and what support is available here