In 2020, we joined forces with Wales' other children's hospice, Tŷ Hafan in South Wales, to ask the children, young people and families in our care what they need to live the best life they can, and if children's hospices in Wales provide them with enough support.

We had an incredible 133 responses from families who access children's hospice services right across Wales — and we learnt a lot. We learnt about what families love about our care, but also what they desperately need more of. You can see a clear snapshot of their thoughts in the infographic above.

Since then, we've taken the voices of our families from the survey to develop the 'Family Voices' report - Our Lifeline. The report is incredibly powerful and presents, very loudly and clearly, and in the words of our families, the most important concerns of families who have children with life-limiting conditions.

Together, with Tŷ Hafan, we are now calling on the Welsh Government to listen to the voices of our families to create a better, brighter and more sustainable future for paediatric palliative care in Wales.

You can read the report in English here or read the report in Welsh here.

Nerys Davies was one of the parents who took part in the project - You can read her story about life with Bedwyr here, along with her thoughts on the changes she would like to see for all families in Wales.

We are also grateful to HTV's Ian Lang for his report on the launch of our survey that you can see here.