Hospices: Rise in demand for children's palliative care expected

Bedwyr needs specialist support and has been helped by Hope House Tŷ Gobaith

Demand for palliative care for children is likely to rise as conditions become more complex, new research suggests.

Researchers at the University of York found the number of children with life-limiting conditions rose by almost a quarter over 10 years in Wales.

One of Wales' children's hospices said the research reinforced the need for long-term Welsh government funding.

The Welsh government said the report would help it to determine where investment was needed.

According to the report, launched by children's hospices Tŷ Hafan and Tŷ Gobaith, one in 172 under 18-year-olds have a life-limiting conditions, based on data from 2009 to 2019.

"The trends identified in this ground-breaking report predict that demand for the services provided by Tŷ Hafan and Tŷ Gobaith is going to rise steeply," Andy Goldsmith, chief executive of Hope House Tŷ Gobaith, said.

"It also shows that the type of services they provide will need to adapt to keep up with the increasingly complex conditions that children are now living with."

Nerys Davies from Llanrwst, Conwy, whose son Bedwyr lives with Coffin Siris Syndrome, said specialist care was vital for the families living with life-limiting conditions.

"Tŷ Gobaith gives us a big boost," she said.

Bedwyr's condition means he can go downhill rapidly

Eight-year-old Bedwyr is non-verbal and cannot digest liquid.

"The support is there for you day or night," said Nerys.

He loves nothing more than to spend hours on his trampoline with his big brother Gethin, aged 14.

But Bedwyr's condition means he can go downhill rapidly and needs specialist support.

"He can go to school in the morning and by the afternoon, he's really unwell in Ysbyty Gwynedd," said Nerys.

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Hope House Tŷ Gobaith, just outside Conwy, has provided "incredible" respite and support for the family, she added.

"It's like being in your own home," said Nerys.

"Bedwyr has so much fun trying new experiences there."

Nerys said the nursing care Hope House Tŷ Gobaith offers Bedwyr emotional support, and allows the family to recharge their batteries.

Hope House Tŷ Gobaith allows the family to recharge their batteries

"It's so nice to know Bedwyr can go there and have respite from us too."

Maria Timon Samra, chief executive of Tŷ Hafan Children's Hospice said the hospices were taking a "huge amount of pressure off an already very over-stretched NHS".

"More than ever this reinforces the need for a sustainable long-term funding solution from the Welsh government," she said.

The Welsh government said: "We want people to have access to the highest quality end-of-life care and support. That is why we continue to provide over £10m annually to support specialist palliative care services across Wales.

"We know that children's hospices are facing increasing challenges, managing increases in energy and running costs alongside a growing need for their services.

"The report launched today is a valuable contribution to our understanding of the complexity of children's palliative and end of life care and will help inform where further investment is needed," the spokesperson said.