Hope House demands government action for families

Families across north Powys who care for children with life shortening conditions are being forced to battle through a complex and fragmented support system, according to a new report published by children’s hospice charity Hope House Children’s Hospices.

Released during Children’s Hospice Week, the Family Voices 2 report has been produced jointly by Hope House and Tŷ Hafan and draws on the experiences of families from across Wales.

The findings are particularly relevant for families in Newtown, Welshpool and north Powys, who rely on Hope House and its Welsh hospice, Tŷ Gobaith, for specialist care and support. The charity’s main hospice is based near Oswestry, just across the border in Shropshire, serving families from throughout mid and north Wales.

The report paints a picture of parents and carers struggling to navigate health and social care systems, often reaching crisis point before help becomes available.

While more than three quarters of families surveyed said hospice care was easy to access, confidence fell sharply when it came to other services. Just 56 per cent said healthcare services were easy to access, while only 42 per cent said the same about social care. Only 27 per cent reported that waiting times were never a problem.

Families also described a lack of information about available support, with some only discovering hospice services themselves.

One parent told researchers: “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 warns that many families are being left to act as care coordinators, advocates and crisis managers while also caring for a seriously ill child.

Hope House Chief Executive Andy Goldsmith said the findings highlight a system that places too much responsibility 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.

“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 also highlights the wider impact on family life. Around a third of parents said accessing services had a severe effect on their ability to work or study, while many reported significant pressures on finances, relationships and emotional wellbeing.

Researchers found that more than a quarter of parents said their child did not die in their preferred place, prompting calls for more consistent end of life planning and long term bereavement support.

The hospices are calling for eight key changes, including earlier referrals to hospice services, clearer information for families, investment in specialist staff, better coordination between services and action to address barriers such as travel distances and costs.

For families living in rural areas of north Powys, where specialist services can often involve lengthy journeys, the report argues that improving access and coordination of care should be a priority.

Chief Executive of Tŷ Hafan, Irfon Rees, said: “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.”

The report calls on the Welsh Government, NHS organisations, local authorities and children’s hospices to work together to improve support for families caring for children with life shortening conditions.

The full report is available from www.hopehouse.org.uk/family-voices-2