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10-16 June 2024

"I'm Martyn. I turned 40 in January, so still quite young. My wife Anna was diagnosed with motor neurone disease in May 2023. We’ve got three daughters and we’re evolving as a family with Anna’s MND.  I'm a full-time carer, I do more than 35 hours a week and I’m up during the night. Everything I do and every decision I make, it's about Anna, her best interests, what she wants, how she wants things to happen. I do everything for Anna because we have our routines. She doesn't need to tell me to do anything. It's like a military operation. Unfortunately, the kids become an element of care and support for Anna. It's not full time, but everyone in the house and across our wider family, has caring responsibilities. They're all carers in some way. 

"I gave up work in November and Anna on ill health retirement as a Social Worker in August last year. We’re now 70% down on our income. I’ve just had my latest energy bill, that’s gone up by about £250. Anna can’t deal with the cold and has the fire on, heated blankets and central heating. But that’s the effect of MND.  

"As a carer, you're not just dealing with the obvious that's in front of you, like you're wife and what she needs now her MND is evolving, and the changes that you have to make. You're battling social care, you're battling home adaptations, you're battling benefits. I believe as a carer, if you don't have a voice, you're hindered and the person you’re supporting is hindered.  

My main concern is that we can't go into another winter with what we're doing now. The impact from where she was when she was diagnosed, to now, is a massive difference. I don't want local authorities and healthcare thinking we’ve got time. We have a laugh that I can walk through my house backwards, I've got used to it that much by holding on to Anna's hands to move her around the house, but that's not how it should be. They need to invest into MND and make sure they do the right thing for dialogised people, quickly, so they can live their lives. We’ve been a year now, battling, and I don’t want another year. I want to be able to make things a little easier.

"My priority is Anna and what she needs."

With thanks to Martyn for sharing his story.

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