A 33-year-old man who needs 24/7 care has made an emotional plea to the Welsh Government to follow England and introduce personal health budgets.
Rhys Bowler, from Pontypridd, has Duchenne muscular dystrophy – a muscle-wasting condition. He relies on a ventilator to breathe and is unable to move his arms and legs.
Calling for the ability to choose his own carers, he said: “Let me live.”
The Welsh Government said it was “considering a range of options”.
Rhys, who controls his wheelchair with his finger, said he does not currently get the support he feels he needs.
If he lived in England, he could apply for as personal health budget – a pot of money which would be paid directly to him from the NHS, and enable him to employ carers of his choice.
In Wales, such a fund does not currently exist.
‘I want freedom 24 hours a day’
Instead, Rhys has two choices. He can receive money to directly employ carers through social services – but he says those funds only allow 104 hours of care a week.
His other option is to receive 24-hour care through the NHS – but that would mean losing all control over who is caring for him.
“They help me with everything – showers, getting up in the morning, going to the toilet, feeding me. Absolutely everything,” he said.
“At the moment, I have to split the money I’m getting. That means I can be on my own for up to five hours at a time. The problem with that is, for instance if the batteries in my ventilator run out…I’m dead.
“I can’t breathe without it. But the amount of money means I can only have split shifts at the moment. I can’t decide when I go out, so there’s no socialising. I’m at home 24/7.
“I want a system like in England. I want freedom 24 hours a day and that they give me the money to help me decide how to do that.
“The money is there, but at the moment they’re paying agencies. Personal health budgets are available in Scotland and England but they’re not available in Wales for some reason.
“I just want the freedom to live like everyone else. Just to live the way I want to. It would change my life completely.”
‘You can be like everyone else’
Three years ago, Rhys lost his younger brother, Geraint who had been tested for Duchenne Muscular Dystrophy at birth. Rhys, three years old at the time, was subsequently tested and found to be living with the condition.
“Losing Geraint was so tough. He was the only one who understood what I was going through. Life is short. I want to live for him. For both of us. That could be my legacy – to tell people like me you don’t have to worry any more. You can be like everyone else.”
In a statement, a Welsh Government spokesperson said: “We are reviewing how care for people with complex health issues is provided in Wales.
“Our aim is to provide integrated health and social care and to give individuals, who wish to do so, control over how their care is delivered. We are considering a range of options, including independent user trusts, similar to the personal health budgets in England.”
Rhys is calling on them to act now. More than 400 people have signed an online petition he has created calling for the creation of personal health budgets in Wales.
And he has a clear message for Health Minister Vaughan Gething.
“Don’t keep people waiting. Perhaps lockdown has given people perspective as to what it’s like to be stuck at home. To be unable to get out and live your life.
“If you give me freedom, you’ll change my life completely. You’ll give me the freedom to be happy basically. Let me live.”