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A Lifeline Fund for Wales

Following the publication of our Family Voices report in 2020 – which set out the support the families of children with life-limiting and progressive conditions need in Wales – Tŷ Hafan and Tŷ Gobaith have been working closely with the Welsh Government and Members of the Senedd to advocate for a more sustainable funding settlement, extend the breadth and depth of our reach for children and families in every corner of Wales.in turn supporting  Wales on its mission to become a more compassionate country.

Read the 'Family Voices' report in English here and in Welsh here.

Our Lifeline Fund campaign – so named after our families who called us their “lifeline” - came about as a call to action on the Welsh Government, as Wales’ two children’s hospices were collectively receiving less than 10 percent of care cost funding from statutory sources in Wales – despite the hospices supporting more than 450 families each year.

On Tuesday 25 January 2022, following the first phase of a review of hospice funding in Wales, the Minister for Health and Social Services, Eluned Morgan MS, announced that Tŷ Hafan and Tŷ Gobaith will each receive 50% of an additional £880,000 every year. This funding is a positive first step towards a more sustainable funding solution for the hospices and will go some way to ensuring that every child facing an unfairly short life gets the care and support both they and their families deserve. More information on the Minister’s announcement is available here.

What will this funding achieve?

• Ensure continued respite care for children with a life-limiting condition and their families at hospices.
• Enable hospices to employ more staff who can develop positive relationships throughout a child’s life.
• Reduce the burden on, and financial costs to, the NHS by reducing unplanned and crisis hospital admissions.
• Ensure our hospices can sustain and expand our care in other areas such as: physiotherapy and play therapy, clinical support and advice.
• Support local government to meet its statutory requirements in relation to respite care
• Ultimately, it helps Wales to make a vital step in its national mission to become a compassionate country.

Thank You!

We want to thank all the families who took the time to contribute to our Family Voices survey in 2020. Without your help we never would have been successful in our calls for additional Lifeline funding from the Welsh Government. We are beyond proud to have worked with you on the Family Voices project and hope that you will support our research work in the future as we continue to lobby the Government for positive changes for your benefit.

Next Steps

While the Welsh Government’s announcement is, undoubtedly, a welcome first step and does provide greater financial confidence for our hospice, we are still heavily reliant on the generosity of the Welsh public for around 80 percent of the cost of providing care to some of Wales’ most vulnerable children and around 90% of the cost of operating our charities.

We look forward to continuing to work positively with this Senedd as part of Phase 2 of the End-of-Life Care Review – and ensure that Tŷ Hafan and Tŷ Gobaith, play a central role in developing an end-of-life care pathway that is fit for purpose and has children and young people at its core.

2022 will be a key year for the development of further policy to support our service users in Wales. We aim to:

1. Continue to advocate for a more sustainable funding settlement from statutory sources in Wales.
2. Ensure that every local authority understands its statutory obligation to provide appropriate respite care for children with life-limiting conditions; and that these services are properly funded.
3. Ensure that access to end-of-life, bereavement support and respite services is easy, timely and free at the point of service for everyone who needs it in Wales.
4. Ensure every family who has experienced the loss of a child gets the care and support they deserve.