‘Family Voices 2 - Pushed to the Limits’ is a new report based on a survey of families who access children’s hospice services right across Wales. It has been published jointly by ourselves and Tŷ Hafan to mark Children’s Hospice Week 2026.

We are so grateful to the families and young people who took part and together painted a clear picture of the barriers they face as they struggle to access the care and support they need.

At the heart of the report families are asking for a system that works.  

In response, the report sets out eight priorities for change.

• It calls for clear, consistent information so families understand what support is available from the start, and for earlier referral to hospice services so help is received before crisis point. 
• It highlights the urgent need for investment in skilled staff across health and social care who understand complex conditions, alongside giving every family a named professional to coordinate their care.  
• It also urges action to tackle the real-world barriers families face to access care, including travel, cost and distance, while making services more inclusive and culturally responsive.  
• Finally, it calls for more consistent end‑of‑life care planning and long‑term bereavement support, so families are not left alone at the most difficult moments. 

The report makes clear that solutions are within reach, but require coordinated action from the Welsh Government, NHS, local authorities and the children’s hospices.

 We hope people will read this report with the seriousness it deserves and join us in turning what families have told us into real, sustained improvement. 

Infographics

Full report