Kim has the condition titin related myopathy and lives in Glasgow. She shares her struggles of having her care hours cut by almost half, the challenges of fighting for basic human needs, and how the support team at Muscular Dystrophy UK have helped her to deal with this.
“My care has been cut by nearly half – I can hardly leave the house now”
At 58, I’ve been re diagnosed three times with different conditions. I’ve worked for the Scottish Huntington’s Association for the last eight years, but I’ve recently been told I’m facing redundancy which is hard as I love my job.
Accepting deterioration
I’m at the stage in my condition where pretty much every aspect of my life is affected. I use an electric wheelchair full time now and can no longer transfer to my bed or the toilet like I used to. Sometimes when I’m at a restaurant I struggle to bring the food up to my mouth if the table’s too low, and I’ve started having to use straws to drink.
“The hardest part of having a degenerative condition is as soon as you begin to process and accept the level of independence you’ve got, you suddenly lose another ability and have to start the hard mental process from the beginning. It’s like a never-ending cycle.”
Losing my care has cost me my independence
One of the most traumatic experiences for me has been having my care cut from 52 hours a week to 31 hours. In 2022, I was assessed as needing 52 hours of care a week, but in July this year I was told this would soon be cut to 31 hours a week.
“I got a phone call at 5pm on Friday 26 August telling me that my care would be cut by 19 hours that coming Monday.”
Having so little care is beyond stressful. The agency has spoken to me about the carers needing to leave on time. Tasks often have to wait until the next carer comes in.
I wouldn’t cope without the Muscular Dystrophy UK support team
Jackie from the Muscular Dystrophy UK support team has been helping me for about seven years now and she’s absolutely amazing. Every charity needs a Jackie.
She’s been helping me an enormous amount with the care side of things, liaising with the social workers, Social Work Managers and Finance and MSPs. Jackie’s also been helping me understand the client contribution side of my care. This is a big worry for me, as the agency are going to put their prices up next year. When this happened before, social work did not allocate me a worker and so therefore didn’t increase my budget, so I had to considerably increase my contribution. I’m not sure how I’m going to afford that again next year.
“I try to do these things on my own, but the constant emails, letters, and phone calls get so overwhelming. Whenever I call Jackie and tell her that I can’t do it anymore, she’s amazing at stepping in and taking some pressure off me.”
A few years ago, she helped me get some funding for respite care which has been invaluable. I used to get two weekends per year funded by my local authority. When that was cut down to one weekend, I asked my social worker if I could use some of my funding for my care towards this. His manager’s response was “this will be your last year attending respite because we’re not prepared to pay for you to have a jolly.”
After that, Jackie successfully wrote to some private funders, which allowed me to have a weeks respite support at Revitalise Respite. It’s been so important to know that even just for one week, I have somewhere I can go to be looked after and not have to worry. The respite centre is sadly closing next year due to a lack of funding.
Muscular Dystrophy UK support groups don’t make me feel so alone
I also attend some support groups that Jackie runs when I can. It’s amazing to meet and connect with people who have similar conditions. No matter what type of muscle wasting condition we have, we all seem to face the same problems, so it’s comforting to feel like you’re not alone.
This is another thing that has become more difficult since my care hours have been cut. My care hours now only allow for basic human needs like getting out of bed and helping me eat breakfast. They’ve taken away any support that allowed me to get out in the community and see people. I did attend one recently where I got a taxi home, but that cost me £25 which I can’t afford very often. Jackie does run some of the groups online, which is helpful, but you can’t compare it to catching up in person.
Jackie is a lifeline and someone that I couldn’t function without.
Speak to us
Our helpline provides free information and emotional support to anyone living with a muscle wasting or weakening condition as well family members, carers and friends. Monday to Thursday 10am to 2pm.
Our support groups
Our support groups are safe and welcoming places to talk to others affected by muscle wasting and weakening conditions, share experiences and meet people who understand what you’re going through.
