‘Please fund the care we need and deserve’
Claire House young adult Liam takes hospice funding plea to Westminster
When Merseyside student Liam Ashton heard government funding for hospices was at risk, he took his concerns to Westminster – twice!
Liam, who is supported by Claire House Children’s Hospice, returned to London to urge MPs into action on the Children’s Hospice Grant.
“This is second year we have gone to Parliament to ask for this funding. It was fascinating, it was full of busy people who run the country! Also, being in one of the rooms where they have debates and enquiries which you see on the news was surreal,” said Liam, 20.
“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.”
Liam from Halewood lives with Duchenne Muscular Dystrophy, a muscle-wasting disease, and uses a wheelchair. He has been supported by Claire House for 12 years.
During a roundtable meeting and drop-in for MPs, Liam bravely explained why Claire House is vital.
Liam, who is studying History at Edge Hill University, said: “I have used the hospice for hydrotherapy, counselling and the social group. It’s life changing.
“Without Claire House, life would be really difficult for people with disabilities and serious illnesses. It’s vital for my life and my family. It’s kept me healthy and enabled me to live my life the way I should.
“The social group has given me so much confidence in meeting new people, making friends and trying new things. It played a massive part in me feeling comfortable enough to go to university and move out from home.”
Liam was diagnosed with DMD when he was just two-and-a-half, following tests to find out why he walked in a lopsided way. As time went on, he lost the use of his legs and by the age of seven he needed to use a wheelchair all the time.
He said: “I remember when we were first given a tour of Claire House that my first thought was ‘wow’. There was just so much to do and seeing the hydrotherapy pool was cool.
“I went once a week for hydrotherapy, and it was one of the biggest helps with my symptoms. It’s such good exercise and is the one place I could walk.
“Things like hydrotherapy, respite and counselling aren’t easily or quickly accessible via the NHS, and if they take those away it will end up costing the NHS more money, take up bed spaces and make waiting lists even longer. They are so vital to so many people like me and without them we would really struggle.”
Funding is crucial for children’s hospices like Claire House that provide essential care and support for seriously and terminally ill babies, children and young adults.
On November 12, 2024, Liam joined our Chief Executive David Pastor, and Together for Short Lives, who represent children’s hospices around the UK, at a lobby day in Westminster for a second time.
The following day, Health Secretary Wes Streeting confirmed the Children’s Hospice Grant would continue, which was significant news.
This was a partial campaign win for children’s hospices. However, there is still more to do. And Liam hopes others will join him in campaigning to ensure the grant is centrally distributed and increases by the rate of inflation.
He said: “I am glad the day made a difference. But please join me in calling on the government to fund the care we not only need but deserve.
“Caring for a disabled child is non-stop. 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.
“Claire House also has parent support groups so they can meet people who know what it’s like, counselling for the family, and siblings’ days out which have been a massive help.”
As Liam got older, he felt there weren’t many young people like him that he could connect with while visiting the hospice. This was noticed by Andy and Alex, who work with young adults like Liam at Claire House. And so, the social group was born in February 2019 – something that Liam said has transformed his life.
“There are now 20 to 30 regular members across all the groups, young people like me who have fulfilling lives to lead but just needed that little bit of encouragement. We meet once a month at Claire House, and we have days out together.”
To find out more about the campaign to protect children’s hospice funding visit: togetherforshortlives.org.uk
