Elaine explains the challenges she’s been through, the fight with the local authority and the long and frustrating wait to get a care package.
“Life is hard enough without having to fight for care, benefits and housing adaptations!”
We all know living with a progressive muscle wasting condition is beyond hard, and over the past few years my mobility has deteriorated a lot. Every day of my life is a constant struggle because I can hardly move. My condition isn’t going away. It’s not getting better. It’s going to get worse.
Living with that reality is hard enough. But what’s made things even harder is the constant battle to get the care, adaptations and support I need to live safely and with some normality.
I needed urgent care, but there was nothing urgent about it
My condition was getting significantly worse at the beginning of 2024, so I made a self-referral to my local Adult Social Care. I knew I couldn’t carry on managing alone, especially as my daughter was due to go back to university later that year; she was helping me when my husband was at work.
I hadn’t heard anything after a few months, so my occupational therapist sent an urgent report too. They didn’t respond to her either.
“I had a terrible year, and it was made so much worse by feeling like nobody cared enough to help me. I felt the only reason anything eventually happened was because I told them I wouldn’t be able to continue living unless something changed.”
At that point I was allocated a social worker.
Finding someone on my side
When my care package first started in September 2024, I was given one hour in the mornings, Monday to Friday. I said straight away that it wouldn’t be enough time. Once the carer helped me in the bathroom on the first day, there were only three minutes left. There was no time for anything else.
Thankfully, the care agency manager understood and had already anticipated this so had started applying for more funding. The hours were increased, and after my husband had an accident and broke his hand, I was also given weekend care and help with shopping.
“I’m so grateful to have found a care manager who genuinely cares, and I really do appreciate the care that I’m now receiving.”
Now I have one and a half hours in the morning for personal care, a 45-minute lunch call, two hours a week for help with shopping and six hours a week to go out. That means I can leave my flat twice a week for three hours. The rest of the time, I’m at home.
The uncertainty of whether I can have my house adapted is awful
I’m also waiting for adaptations to make my home wheelchair accessible. My occupational therapist sent the specification to the Disabled Facilities Grants team in March 2025, but I didn’t hear anything for a long time.
When the grants officer eventually visited with two builders, after a year and three months wait, I thought things were finally moving. But then I was told that because I live in a leasehold flat, permission is needed from the freeholder before any work can begin.
It’s left me so worried as I’ve been told nothing more can be done if the freeholder doesn’t respond or doesn’t give permission. But I can’t continue living somewhere that doesn’t meet my needs. If my home can’t be adapted, then I need support to find somewhere accessible.
Thankfully I’m getting support from Muscular Dystrophy UK to try to help me fight my corner, which I appreciate, but it shouldn’t be like this.
I lost three years of benefits because I didn’t have it in me to fight
I’ve also had difficult experiences with benefits. I previously received higher-rate DLA, which I was told was an award for life because my condition is progressive. When I was moved to PIP though, I was put on the standard rate. It felt so unfair, but at the time I didn’t feel strong enough to fight it.
When I was reassessed three years later, they agreed I should have been awarded the higher rate, but refused to backdate it, so I lost out on money I was entitled to and really needed.
It’s already hard to live with a progressive condition. You shouldn’t have to deal with extra battles at every stage: fighting for a care package, fighting for PIP, and now fighting for the adaptations that would help me live safely at home.
I just wish things could be easier
What I want people to understand is that the condition itself is enough to cope with. Every day is a struggle, and the support system should make life easier, not harder.
I’m grateful for the care I have now, and for the people who did listen. But I shouldn’t have had to reach crisis point before getting help. I shouldn’t have to keep proving that my needs are real when my condition is progressive.
I just wish things could be easier.
