CHAS appeals to Scotland to help rebuild the future of children's palliative care...

… as charity records highest level of demand to date. Scotland’s only children’s hospice charity is calling on the public to help transform the future of children’s hospice care after revealing it is supporting more families than at any point in its history.

Today, Children’s Hospices Across Scotland (CHAS) launches its summer fundraising campaign as part of its ambitious £20 million More Than A Hospice Appeal, a transformational three-year project designed to ensure every family facing the devastating reality of a child with a life-shortening condition can access expert care, wherever and whenever they need it.

The appeal comes as demand for CHAS services reaches unprecedented levels.

Last year alone, CHAS supported 540 babies, children and young people across hospice, community and hospital settings and 1,800 individual family members, the highest number in the charity’s history.

Over the past four years, the number of families accessing support has increased by 17%, while stays at CHAS hospices have risen by 45% in just three years.

Behind every number is a family trying to make the most of precious time together.

Every week in Scotland, three children die from an incurable condition. Many more are living longer than ever before, often with increasingly complex medical needs, meaning the demand for specialist children’s palliative care continues to grow.

More than a hospice

CHAS supports babies, children and young people with life-shortening conditions, providing specialist nursing and palliative care, family support, therapies, respite and end-of-life care.

But CHAS says children’s hospices are there to help children live – as well as being beautiful places to die.

They are places where children go swimming, create artwork, make friends, play games, celebrate birthdays and experience joy. They are places where exhausted parents can rest, siblings can simply be brothers and sisters, and families can create memories that last a lifetime.

The More Than A Hospice Appeal will help CHAS:

Rebuild Rachel House in Kinross, creating new therapeutic, sensory and wellbeing spaces, including a large purpose-built hydrotherapy pool
Modernise Robin House in Balloch
Expand care and support delivered directly into family homes
Increase specialist support in hospitals across Scotland

Over the past year alone, CHAS delivered:

1,188 hydrotherapy sessions
1,501 music therapy sessions
180 memory-making sessions
6 specialist events for children whose siblings have died

The charity also helped facilitate 430 Clowndoctors visits in partnership with Hearts &Minds charity.

CHAS hopes the appeal will allow thousands more children and families to benefit from these services in the years ahead.

“The difference for Quinns will be transformational”

For Jennifer Rutherford from Stirling, whose 10-year-old son Quinns lives with an extraordinarily rare neurological condition called GNA01, a stay at CHAS’s Rachel House hospice offers something many parents take for granted.

“For those few days, I can just be his mum again,” she says.

“We’re not thinking about medication, equipment, appointments or care routines. We’re spending time together as a family. We can breathe. We can rest. We can make memories.”

Quinns was initially believed to have cerebral palsy but was later diagnosed with GNAO1, a condition affecting only a few hundred people worldwide.

The condition causes severe movement difficulties and has led to lengthy hospital admissions, including one six-month stay.

Despite the challenges he faces, Jennifer describes her son as “an incredibly bright, sociable little boy” whose infectious smile wins friends wherever he goes.

One of Quinns’ favourite activities at Rachel House is spending time in the jacuzzi.

“When Quinns is in the water, the warmth helps his muscles relax and he smiles so much,” Jennifer said.

“I imagine the freedom being in the water must be amazing as the rest of the time he has to be supported in his wheelchair including being fully strapped in.

“Opportunities to swim together as a family are rare because of Quinns’ complex needs. The new hydrotherapy pool will give families like ours opportunities we simply wouldn’t otherwise have. The difference for Quinns will be transformational and we are so excited to be able to all swim together and make lots of new memories.”

“We must reimagine children’s hospice care”

CHAS Chief Executive Rami Okasha said: “Every week in Scotland, families hear news that will change their lives forever. They learn their child has a condition that will shorten their life, and from that moment they begin a journey no family should have to face alone.”

“CHAS is there from diagnosis onwards, helping families navigate the unimaginable. We provide expert care, practical support, respite, therapy and, when the time comes, end-of-life care and bereavement support.”

“The reality is that children’s hospice care is changing. More children with life-shortening conditions are living longer, often with increasingly complex needs. That is something to celebrate, but it also means demand for specialist support is growing rapidly.”

“Our hospices are filled with laughter, music, creativity and family moments. They are places of living, not just dying. That is why this appeal is called More Than A Hospice.”

“With the support of the Scottish public, we can transform children’s hospice care for future generations and ensure every family has access to the care they need, wherever they live in Scotland.”