How going to a children's hospice changed my life

When Liam Ashton was a toddler, his mum noticed he was walking in a lopsided way. Following medical tests, he was diagnosed with Duchenne Muscular Dystrophy (DMD), a muscle-wasting disease that mainly affects boys. The disease gets worse over time, and by the age of seven, Liam had lost the use of his legs and needed to be in a wheelchair all the time.

But Liam, 20, from Halewood, hasn't let his disability stop him from achieving his dreams. After studying hard at Broadgreen International School, he gained a place at Edge Hill University, where he is currently doing a history degree.

He credits Claire House Hospice with giving him the tools and confidence to leave home and go to university. "It played a massive part in me feeling comfortable enough to go to university and move out from home," said Liam.

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He started going to Claire House at the age of eight for hydrotherapy and respite care. Liam said: "I remember when we were first given a tour of Claire House that my first thought was ‘wow’. Without Claire House, life would be really difficult for people with disabilities and serious illnesses. It's vital for my life and my family.

“Going for respite breaks at Claire House meant my mum could relax, knowing I was safe and someone she trusted was looking after me medically.

Founded in 1998 by a couple whose nine-year-old daughter, Claire, died of cancer in 1989, Claire House provides help for seriously and terminally ill babies, children and young people. It has two sites - a full hospice in Bebington and a second site in West Derby - offering day-care, complementary therapies, clinics, play and music sessions, and counselling.

Now he is older, Liam uses the site in Liverpool to attend social group activities organised by the hospice. He said: "It's life-changing. The social group has given me so much confidence in meeting new people, making friends and trying new things."

Liverpool fan Liam appreciates the chance to do normal things with a group of like-minded lads who are going through similar things to him. "There's a lot of boys there and we all like football, so we all got on really well," said Liam.

"Claire House realised there were a lot of boys with my condition but we weren't staying there at the same time, so they changed that and created a social group. If we do stay, we stay at the same time, and we have a group every month where we all go and play games like FIFA and have a takeaway."

Earlier this month, Liam went to Westminster to advocate on behalf of Claire House and urge MPs into action on funding for children's hospices. Liam thought Westminster was a "fascinating" place to visit.

"It was full of busy people who run the country!" said Liam. "Also, being in one of the rooms where they have debates and enquiries that you see on the news was surreal. I spoke to MPs about why Claire House means so much to me. It’s been a constant for over half my life and it’s so important that their services, and those at children’s hospices across the country are protected.”

Funding for children's hospices has been under the spotlight of late as a result of the situation with Zoe's Place, the West Derby baby hospice which faced closure until the people of Merseyside stepped in to save it with a huge fundraising effort.

The day after Liam's visit to Westminster, Health Secretary Wes Streeting confirmed the annual £25 million Children’s Hospice Grant would continue, but according to Claire House, this is only a "partial campaign win for children's hospices". They would like the grant to be centrally distributed and to increase with the rate of inflation.

The average hospice only gets a third of its funding from the government. For the rest, they are reliant on donations from the public and philanthropic organisations. Speaking to the ECHO last month, Claire House CEO David Pastor said the current funding model is "unsustainable". David would like to see a far greater proportion of his hospice's funding come from the state.

"If it was 50-50 it would be a better balance," he said. "There's a big argument for end of life care being fully funded by the state. But things like counselling, family support and trips out might be different, and we can add value by providing these kinds of services. It just works better if there's clarity."