Improving care for adults living with Duchenne muscular dystrophy

Published Date
12/10/2017
Author
Lloyd Tingley
Category
Campaigns

As part of our Duchenne Dialogue series Muscular Dystrophy UK are holding an event on improving healthcare for adults living with Duchenne muscular dystrophy. The event will bring together health professionals, adults affected by Duchenne and representatives from pharmaceutical companies, opening conversations on improving care and research.

The Duchenne Dialogue day will be held on the 27th of October from 10am – 4pm at the Hilton London Bankside, 2-8 Great Suffolk St, London SE1 0UG. To book your place email Lloyd Tingley at l.tingley@musculardystrophyuk.org.

One of the speakers at the day is Mitch Coles (pictured), from Bristol who has Duchenne muscular dystrophy. Below Mitch blogs about his experiences of healthcare for adults living with Duchenne.

When I was a kid going through the motions, things were easier and the best way to describe it is “safer”. The biggest worry was for my family, who were probably just concerned about what I might say next. I gave the doctors my worst. I was an angry kid and it’s easy to see why. You’ve got four or five people staring at you, prodding you and asking obscene questions. Something like “Do you have many friends?” followed by “how does that make you feel?” It turned into an interrogation at times, but there was a safety net, I was a kid. The practical side of it was and still is pretty good; it’s the approach that still needs a lot of work.

I got older and mostly better behaved. Then kid doctors don’t really “get” you anymore, they’ve spent too many years giving out stickers. Every 6 months they’d look at me, say “you look well” then delve into my less than social life. As a fat teenager, I didn’t want to talk about that kind of thing and was made to feel pretty bad about it. The change over from child to adult services was nerve-racking, yet exciting for the most part. I thought I’d be treated more like an adult, it seemed like a win-win. Maybe this ridiculous questioning of everything would go away. That’s the way it was put to me at least. Then it was “we’re going to take away this, this and this”, it was a bit of a scam. Safety net gone, we didn’t even have a limb to be out on. I wasn’t happy with being fobbed off, as I have been so many times.

I went to two adult clinics with my Neurologist. I went once and I didn’t go back for six years; I went back for the first time this year! This says all you need to know. No “change over” like I was promised. I met a new doctor on my own, who didn’t know me at all and told me about Duchenne from scratch. I don’t need that. Six years on, I don’t care what people say or think, so I went back because I thought I should (with a bit of encouragement). I don’t feel particularly helped by going. Perhaps I got the ball rolling with a few things a bit quicker than I would have e.g. finally getting an assessment for my wheelchair.

My main concern is my health; I don’t need reassurance about anything else. I will go to my respiratory and cardiology appointments, because these are what keep me going. What I do the rest of the time should be irrelevant in a healthcare environment, because it is.  I’m happy to undertake any investigations that I may need and any new or ongoing treatments that are beneficial to me. Hospital treatment is something I’m accustomed to, where is the care I need elsewhere? My day-to-day care and support and for many others; it’s out-of-date. I will push for anything that may improve the care that I need. I’m hoping the Adult North Star Network is going to change the way many others and myself feel.

For more information and to attend the day get in touch with Lloyd tingley at l.tingley@musculardystrophyuk.org or on 020 7803 4804.

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