Julia’s House CEO, Martin Edwards, spoke to the BBC this week, highlighting the need for increased Government funding and public fundraising efforts, after revealing that Julia’s House is one of the lowest funded hospices in the country – receiving just eight per cent Government funding.
Martin said: “92 per cent of annual running costs are currently met by fundraising efforts, which are more vital than ever as we face a £1m budget deficit this year – the cost of our care this year will be £3.34 million in Dorset and £2.23 in Wiltshire.
“The cost of living situation has not only increased the hospices costs considerably over the past few years but has also meant everyone has got less money in their pockets to donate to charities. With our government funding still incredibly low at only eight per cent of our income, that leaves us hugely reliant on people remembering us in their wills or buying second-hand clothes in our shops or jumping out of aeroplanes - that's not good enough.
“We had an epic struggle in 2023 just to avoid our NHS Dorset income being reduced. In Wiltshire, we've been told we won't receive any NHS commissioning income until at least 2026.”
How our funding works
Children’s hospice funding comes from a combination of charitable donations, including gifts in Wilts, and a nationally-defined budget.
For several years, NHS England has commissioned the service using a £25m grant, shared between children’s hospices in England. However, NHS England wrote to children’s hospices in April 2023 to tell them that this year (2023/24) will be the final year of the grant.
In future, local Integrated Care Boards (ICBs) will be responsible for providing all of their NHS funding. In 2022/23, Dorset ICB spent just £125,049 on children’s hospice care, and has additional contracts with a community-integrated continuing care team. Julia’s House receives no funding from the NHS in Wiltshire.
"We must hang on to the Children’s Hospice Grant money," continued Martin. "We're in urgent contact with our local health authorities to make sure that vital funding doesn't get swallowed up by the system."
Respite care is an essential service
Unlike adult end of life care, children with life-limiting illnesses are fewer in number, but many have highly complex and rare medical conditions.
Apart from the instability and uncertainty of hospice funding, the costs associated with providing palliative care have escalated in the last year alone. The number of children with a life-limiting condition nationally has trebled in the last 17 years.
Julia’s House cares for 176 families across Dorset and Wiltshire. Martin outlined some of the challenges the hospice is facing: “We are seeing more children with complex needs now. More than 80 per cent of our children require two care staff members to be with them at any time. It’s an intensive process. We also continue to care for the entire family, supporting them for up to five years after bereavement.”
A group of Julia’s House parents have started their own campaign to raise awareness of the funding situation and are calling on the Government and local authorities to ensure the care they receive continues.
Lisa's family has been supported by Julia's House since 2018. Her daughter Annabelle lived with Juvenile Batten’s Disease for eight years before she died in January 2024, aged 18, following a seizure. Annabelle's brother Robbie also has the condition.
Lisa said Julia’s House has "just been absolutely amazing for us". She continued: “The amount of times I've just picked up the phone and said I need help and advice and there has been a familiar voice on the phone. They have bent over backwards to help us. If we don't get that support, I can imagine our family will be a right mess."
Together for Short Lives, a national charity who support families and children’s hospices throughout the UK, has also launched a nationwide campaign ‘Short Lives Can’t Wait’, highlighting the lack of funding which has led to “the postcode lottery families now face when it comes to children’s hospice care across the country”.
Martin appealed: “We need support now more than ever, both in raising awareness of the current situation and the need to increase Government support but also the continuing support of the local community in donating and fundraising for us.”
How you can help
