Ty Gobaith and Ty Hafan in north and south Wales joined forces earlier this year to ask life-limited children, young people and their families, as well as bereaved families, whether children’s hospices in Wales provide the support they need to be able to live the best life they can.

The resulting report Family Voices made clear that, although there is a statutory duty on local authorities to assess a family’s need for respite, without the Welsh hospices and the public donations that keep them open there would be nowhere for them to go.

By publishing the report and giving voice to some of Wales’ most vulnerable families for the first time, the hospices hope that partners, including the Welsh Government, will come to together to help create a “better, brighter and more sustainable future”.

Andy Goldsmith, chief executive of Ty Gobaith and Hope House, said: “Too often the discussion about the needs of life-limited children and their families relies on the views of health professionals and hospices.

"We do our best to translate what we see and hear to decision-makers. What this report does is to deliver, very loudly and clearly, the most important concerns, wishes and fears directly from the families themselves. These are voices that cannot be ignored.

“Year on year, we are seeing demand for our services grow, so it is time to make important decisions so that we can meet our families’ needs, not only today, but in the future too.”

Essential

Mr Goldsmith added: “It is crucial their voices frame, and are central to, what we do. These are families do not just want their voices heard, they need their voices heard.”

Almost every family who responded deemed short break respite care as ‘essential’, with 75 per cent saying they needed more frequent and longer respite stays to enable them to rest and re-charge, and to spend quality time with each other, safe in the knowledge their children were being expertly cared for.

One parent said: “These places are essential to families like ours, the whole family not just the child. They are the ones that keep us from breaking”.

The report identified that 73 per cent of families faced barriers when it came to accessing essential health and social support.

Families also came across obstacles in accessing hospice services including availability, distance to services, schooling, cost or transport challenges.

The report highlighted financial hardship endured by families when caring for a child with a complex and life-shortening condition.

One family said: “Sometimes we don’t go to the hospice because we are just so skint and we haven’t got money for petrol.”