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Paul Bates: “Coming to the House of Commons is about having my say, putting my story across and talking about the challenges facing me and my family”

Paul BatesPaul Bates cares for his nine-year-old son Harrison, who has neurogenetic disorders, and wife Helen, who is 35 and was diagnosed with fibromyalgia three years ago.

We invited him to our Carers Week speed-networking event, so he could talk to MPs about his life and what needs to change for carers.

My son Harrison was delivered in a frank breach position spent most of his first year in and out of hospital with doctors shaking their heads, not knowing what was wrong.

He has an unknown genetic neurological condition that severely affects his gastric system and as result he is mainly tube fed. He is hypotonic, which is low muscle tone and causes his joints to overstretch and an increased use of energy, so that makes movement difficult, and is under the umbrella of global development delay with signs of Autistic behaviours and Tourette’s.

Helen has a condition called fibromyalgia which causes widespread severe pain, exhaustion. Looking back we can see the signs of her condition were always there, but they became gradually worse after Harrison was born.

Over the years I gradually took over more and more of Harrisons care and started doing more and more to help Helen. When I gave up work I thought it might be for a year or two, not the eight years it currently stands at.

“It’s not the caring I find difficult, it’s the fight for support”

Paul Bates speednetworking

On Tuesday I had the opportunity to talk to MPs about my experiences. Caring for Harrison and Helen isn’t the hard part – having to fight for every scrap of support is.

I spoke about my experience of applying for disability benefits and getting the system to understand the challenges families like mine face – it’s difficult, emotionally difficult, time consuming, complicated and it’s draining. We are told that as carers we have rights, but my experience has been that you’re often made to feel that you’re wrong to expect it.

We have to deal with an enormous number of people for both Helen and Harrison, and it’s a job just keeping on top of it. My past jobs have never had so much complex administration to do - even when I was insurance claims assessor! As a carer for two people, it frustrates me when professionals make decisions without looking at the whole family.

“A lot of the challenges we face are the same”

Until a few weeks ago, I didn’t even realise I was a ‘carer’. At the networking event I was sat with two other carers, and we quickly found that while we have different caring experiences, a lot of the challenges we face are the same. A lot of the MPs also had caring experiences of their own, and it was good to hear they understood many of the issues.

Paul Bates speednetworking2

It can be hard to talk about what you’ve been through and the challenges you are facing in a way that will make people think and then do something to make a difference. I’m not sure what effect talking to MPs will have, or whether it will change things. I hope I was able to share my experiences in a way that will encourage them to speak up for carers in Parliament. I was also pleased to meet my local MP Caroline Spelman.

“I’m just one story, there are thousands of others in a similar situation”

Coming to the House of Commons to speak to MPs for me has been about having my say. I want to be able to put my story across, and talk frankly about the difficulties that me and my family face.

I’m just one story, there are thousands more similar to mine.

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