Emma lives with congenital myopathy and has been receiving 24-hour support through Continuing Healthcare (CHC) for the last three decades. She shares how devastating it was to suddenly receive a letter saying she didn’t fit the criteria anymore, the stress this caused, and how Muscular Dystrophy UK helped her fight to keep the care.
I’d been having the same care for 30 years – until a letter said I was no longer entitled to it.
I’ve been a wheelchair user since I was very young and have extremely limited muscle movement, mainly in a few fingers on my right hand. Every aspect of my daily life requires support. I need help to eat, drink, bathe and use the toilet, and I wear a neck brace constantly. I also have respiratory issues, so sleep each night with a ventilator and often need to use a cough assist machine during the day to clear my airways. It’s therefore vital that someone is available to respond to me 24 hours a day.
Despite these challenges, independence has always been important to me. I moved into my own home when I was 19 and have worked closely with my care agency to build a routine that suits my needs.
I was told I’d be losing my independence via a letter
For more than three decades, that system worked. But in August 2024, everything changed. A nurse from Nottingham CityCare visited my home at the end of the month. I believed it was a routine review so didn’t arrange for anyone to be present to represent me. Looking back, that was a mistake.
A few months later I received a letter stating that a multi-disciplinary team had decided I didn’t have a “primary health need” and therefore didn’t qualify for CHC funding. This decision made no sense considering the level of care I’ve required throughout my life. My condition hasn’t improved over the years, it’s got worse!
I struggle to read long letters and as I assumed it was the usual summary of my review, I just skimmed it. It wasn’t until my mum found the letter a few months later that we sprung into panic mode. The letter gave six months to appeal, and thankfully we managed to submit the appeal just in time.
The stress of waiting was unbearable
Weeks passed without any response. Eventually, I asked my father to chase it up only to find out the Head of Care was on extended sick leave, and our appeal was simply sitting in her inbox.
Responses to our enquiries were often vague and focused on procedures, rules and timelines rather than actually addressing my situation and how worrying this was. At one point, a contact in social services even told us that my funding was about to be cut completely. That information turned out to be wrong, but hearing it caused enormous stress. For months, the uncertainty hung over me.
It shouldn’t have taken over a year to get clarity
The situation dragged on throughout the summer of 2025, and the anxiety it caused was overwhelming. When you rely on round-the-clock care to live safely, the thought that it could be taken away is terrifying.
It felt like we were constantly chasing answers, constantly trying to prove something that should have been obvious. We realised we couldn’t fight this alone and reached out to Muscular Dystrophy UK for their help.
In November 2025, more than a year after the original review, a meeting was arranged at my home with the acting Head of Care from CityCare. My care agency attended, my consultant sent a nurse to represent the clinical side, and an Advocacy Officer from Muscular Dystrophy UK joined.
For the first time in this entire process, everyone involved could see the full picture. After around two hours of discussion, the acting Head of Care said, “Why wasn’t all of this made clear a year ago?”
This was incredibly infuriating. We had been saying all along that the moment anyone met me and understood the level of care I need, it would be obvious.
In the end, the correct decision was finally made. It was recognised that I do have a primary health need, and I was assigned a case manager. Because I had been told I had to pay towards my care through social services during the dispute, CHC have recently agreed to refund those payments back to September 2024. That financial burden was such a difficult expense to manage.
While I am relieved the outcome was right in the end, the process itself took over a year and caused an enormous amount of unnecessary stress and financial loss. All because a nurse ticked the wrong boxes and didn’t ask the right questions.
Muscular Dystrophy UK’s support was invaluable
I couldn’t have navigated this experience without the support of Muscular Dystrophy UK. They were incredibly helpful, not only by attending the meeting but by offering guidance and advice throughout the process. Their involvement helped ensure my voice was heard.
If there’s one thing I want people to take from my story, it’s don’t give up.
When systems fail, it can feel overwhelming and exhausting to challenge decisions, especially when you already live with complex health needs. But you have the right to the support you need.
