Families ‘pushed to the limits’ caring for seriously ill children, report finds

Two children’s hospices are calling for system-wide change to stop families of children with life-shortening conditions needing to “fight” for help in Wales.

This Children’s Hospice Week (15 – 21 June), Tŷ Gobaith and Tŷ Hafan will together publish a report which reveals families across Wales are being “pushed to the limits” as they struggle to access the care and support they need.

The findings in the report, Family Voices 2, are based on responses from families across Wales, show major gaps between services.

They show that families are routinely left navigating a fragmented and complex system of health and social care, and often reaching crisis point before support arrives.

While 76% said hospice care was easy to access, this dropped to 56% for healthcare and 42% for social care. Only 27% said waiting times were never a problem, meaning delays are normal.

More than a quarter of parents who responded said their child did not die in their preferred place.

Families also described how a lack of information from the outset leaves many missing out on support entirely.

One parent said: “Not one of my son’s health professionals ever mentioned [the hospice] to us… If I hadn’t self‑referred, we wouldn’t have had the amazing support from the hospice.”

The report highlights the toll these challenges take on family life. A third of parents said accessing services severely impacts their ability to work or study, while many reported serious effects on their finances, relationships and emotional wellbeing. For many they talk about being “pushed to the limits.”

Change

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

Tŷ Gobaith Chief Executive Andy Goldsmith said the findings reflect a system placing too much responsibility and burden on families.

“Too many face unnecessary barriers: long waits, confusing processes, gaps in local provision and the exhaustion of having to ‘fight’ for help,” he said.

He added: “Families need a health and social care system that works around them – easier to navigate, consistent and equitable – where parents are not left acting as care coordinator, advocate and crisis manager alongside being a parent, and support comes too late or not at all.”

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

Chief Executive of Tŷ Hafan Irfon Rees added: “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.

“We are deeply grateful to every parent, carer, child and young person who shared their experience with us for Family Voices 2. Sharing takes time and courage, especially when life is already so full. Family voices matter, and they must shape what happens next.”