Charity to launch £20m appeal to ‘reimagine palliative care for children’

A children’s hospice charity has launched a £20m fundraising appeal that it says will help “reimagine what children’s palliative care can be”.

Children’s Hospices Across Scotland (Chas) said its More than a Hospice appeal aims to transform children’s palliative care.

The money will go towards rebuilding Rachel House in Kinross, which was Scotland’s first ever children’s hospice.

It will also help to renew Robin House in Balloch, which is a “home from home” where families can access support.

With three children dying from an incurable condition every week, the charity said it will help ensure all families have real choice in joined-up care, so no one faces the death of their child alone.

It also described the appeal as an “urgent call” to Scotland to recognise what children’s hospice care means today.

The charity said medical advances have seen stays at its hospices increase by 45% in the last three years – meaning more children and families need specialist support over longer periods.

Artist’s impression showing how Rachel House could look following redevelopment

It said this highlights the pressure on services, and the urgent need for facilities and world-class models of care to keep pace with families’ needs.

The charity runs two hospices: Rachel House in Kinross and Robin House, while its outreach team operates in every local authority in Scotland.

There is also a joint Chas/NHS specialist team in every children’s hospital in Scotland.

The charity’s chief executive, Rami Okasha, said: “More Than a Hospice is a movement to rebuild, renew and reimagine what children’s palliative care can be.

“We want to unite communities, medical professionals and policymakers behind a shared mission: that every family has genuine choice and unwavering support during the hardest moments of their lives.

“Real choice is what we would all expect to have when we are facing the most devastating times.

“Every week, in Scotland, three children die from an incurable condition, and Chas provides unwavering care at every step on this hardest of journeys for families facing this devastating reality, in our two hospices, in hospitals and at home.

“We welcome advances in medicine which mean more children are living longer with complex needs, but too many families still lack real choice about where and how their child is cared for.”

Funds raised through the appeal will enable the charity to rebuild Rachel House – Scotland’s first ever children’s hospice – as a modern, flexible space designed around the needs of families.

It will support the renewal of Robin House so families can continue to access specialist care, respite and support.

It will also underpin the reimagining of care for the long term by strengthening children’s palliative care across Scotland, including closer working with the NHS and improving support for families.

Mr Okasha went on: “This is our biggest ever fundraising appeal since Rachel House was built over 30 years ago.

“Back then, Chas was founded thanks to the kindness and generosity of the Scottish public, today, this More Than A Hospice Appeal is an invitation for the people of Scotland to stand together again behind a simple belief: that no one should face the death of their child alone.”

CHAS launches More Than A Hospice fundraising appeal CHAS

Caroline Johnstone, whose daughter Ayla lives with Edwards’ Syndrome, paid tribute to the support her family has received from Chas over the last 14 years.

“Since Ayla was diagnosed, Chas has supported us as a family at Rachel House in Kinross,” Ms Johnstone, who is from Sauchie in Clackmannanshire, said.

“Initially with respite stays of two nights every month, and now three to four nights every three months. Chas and the Rachel House team have helped Ayla continue to thrive and are always just a phone call away”.

“I’ve phoned at midnight and during the day and they’re always there.

“If I’m lying awake during the night worrying about something to do with Ayla and need to chat to someone, I know I can phone Chas – that truly is a lifeline.”

To mark the launch of the appeal, Chas is asking people to “make their mark” on a giant fingerprint tree, which it says will create a lasting reminder that no family should face the death of a child alone.

The charity said each print is a pledge to support the More Than A Hospice Appeal and help transform hospice and palliative care for Scotland’s children and families, now and for the future.

For more information, and to donate, visit chas.org.uk