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When children take their first breath, their care is fully funded. Why isn’t it when they take their last?

30 May 2024

Dear Editor,

When my husband and I started our family, we had no idea that we would be using the services of a children’s hospice, an amazing service that offers support to families during their darkest times, but we also had no idea how little funding they get from the government.

End-of-life and palliative care is not the only support they offer. They provide respite, family support, including sibling support, and attend meetings.

When speaking to the CEO of our local hospice, I learned that the services they provide are under threat of being withdrawn because of the lack of funding.

Most children’s hospices are facing substantial deficits. Our local hospice only gets 8% of its income from the government, leaving them almost totally reliant on donations.

In its recent report on hospice funding, Together for Short Lives, the UK registered charity for children’s palliative care, states that, on average, children’s hospices expected deficits in 2023/2024 of £1,060,303 per children hospice, meaning a total shortfall of £36,050,313 across all 34 children’s hospice organisations.

The demand for the hospices is increasing, their costs are rising rapidly, and the reality is that they cannot continue to offer the current level of support.

A group of parents have come together to raise awareness of this issue and to try to influence future policy. This is what we are asking for:

  • more national oversight of local health boards to try to eradicate the postcode lottery
  • a longer-term funding commitment. Even the Children’s Hospices Grant, is not guaranteed beyond next spring

We created a Facebook group, Julia’s House Parents Campaign for Government Funding, to share our campaign.

We want to make ourselves known to all political parties that we are not going away.

When children take their first breath, their care is fully funded by the NHS, so why isn’t it when they take their last?

Lisa Hover, Julia’s House Parents Campaign for Government Funding, UK


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