'Let me live' - the disabled man calling for control over his care

Rhys Bowler needs the help of a ventilator to breathe Credit: ITV Cymru Wales

For Rhys Bowler, everyday tasks - like eating or going to the toilet - are impossible without the help of his carers.

The 33 year old, from Treforest in Rhondda Cynon Taf, lives with Duchenne Muscular Dystrophy, a life-limiting illness.

Rhys is quadriplegic, relies on a ventilator to breathe, and needs 24 hour care.

But despite, this, he told me he currently spends 5 hours each day alone at home.

It's a situation that has led to big problems in the past.

On one occasion, Rhys became stuck next to a hairdryer he uses to warm his hands, when the power on his wheelchair cut out.

At that particular time my chair cut out and my computer systems broke down. And basically I was stuck with the hairdryer for exactly 5 hours. I was terrified to be honest. I could smell my flesh burning

Rhys Bowler
Rhys needs help with eating and drinking Credit: ITV Cymru Wales

Despite the risks, Rhys says he'd rather be alone than give up control over how he's cared for.

Currently, in Wales, people with long-term complex health needs have two choices: they can either access 24 hour care via NHS Continuing Health Care (CHC), or use direct payments from their local authority to hire their own carers.

Both systems have their problems. NHS 24 care means the person has no control over who their carers are and the hours they work.  

And Rhys says council funding isn't sufficient for his needs - leaving him facing gaps in the day with no care at all.

Instead, he wants the Welsh Government to introduce a system of 'Personal Health Budgets' - as already exist in England and Scotland - where the NHS gives an individual control over their care costs to spend as it suits them.

Rhys says this this would transform his life, letting him live like anyone else.

I can have that money for 24 hours a day to basically make my life like everybody else. To get luxuries like going on holiday, that doesn't happen for me. It's very difficult to find a relationship or a partner when you're stuck in the house for five hours a day to be honest

Rhys Bowler

The Welsh Government says it's "considering a range of options, including independent user trusts, similar to the personal health budgets in England."

Rhys says he's tired of waiting and has launched a petition on the Senedd website to further his campaign.

The university graduate says he's been given extra motivation by the example of his brother Geraint, who also had Duchenne Muscular Dystrophy, and who died in 2018 at the age of 27.

When he died I thought 'we had no life together, so something needs to change.' Because two brothers can't sit in their bedrooms fantasising about what it's like living life. We're only disabled people, we're not prisoners. And currently we are stuck in our own home just because we can't have 24 hour care

Rhys Bowler

Rhys with his brother Geraint, who died 2 years ago Credit: Rhys Bowler photo

A motivational speaker, Rhys has worked with the Welsh Government and the Open University on disability issues.

During lockdown, he kept a blog aimed at providing "inspiration and positivity" to readers during a difficult time.

Rhys has spent his life defying the constraints of his illness. But he says he can only get complete freedom with the government's help.