Tag: More Than a Hospice appeal

Sanne Dijkstra-Downie MSP backs greater choice for children with life shortening conditions

Sanne Dijkstra-Downie MSP has highlighted the importance of ensuring children with life-shortening conditions and their families can access the right care, in the right place and at the right time, after hearing directly from families supported by Children’s Hospices Across Scotland (CHAS).

At a recent event in the Scottish Parliament, Sanne Dijkstra-Downie MSP joined families, health and care leaders, charities and community organisations in making their mark on a special CHAS installation, reflecting a shared commitment to improving support for children and families across Scotland.

The event heard how children’s palliative care helps babies, children and young people with life-shortening conditions live as well as possible, while supporting their families emotionally, practically and clinically throughout their journey.

During 2025-26, 59 children and families across Edinburgh and Lothians East received support from CHAS through a combination of hospice care at home, and 24/7 specialist support. Alongside 1279 CHAS at Home hours and 483 specialist hospice bed nights, CHAS provided 1585 out-of-hours contacts, ensuring families could access advice and support whenever they needed it.

With the number of children and young people in Scotland living with life-shortening conditions having increased by 40 per cent over the past decade, CHAS is calling for continued focus on coordinated, family-centred support that gives families greater choice about how and where care is delivered.

Rami Okasha, Chief Executive of CHAS, said: “Every child with a life-shortening condition deserves access to the care and support they need, wherever they live in Scotland.

“As more children live longer with increasingly complex conditions, it is vital that services work together around children and families, providing coordinated support and genuine choice about how and where care is delivered.

“Children’s palliative care is a lead case for what public service reform looks like in practice, with health services, local government, communities and charities working together around shared outcomes rather than organisational boundaries.

“Families should not have to navigate disconnected systems to access support. By working together across health, social care, communities and the voluntary sector, we can improve outcomes for children and help families make the most of their precious time together.”

Sanne Dijkstra-Downie MSP added: “Hearing directly from families who received support from CHAS was an extremely powerful reminder of the vital importance of this service. Families should not need to worry about whether and how they can access the right care and support at such a difficult time.

“Every child in Scotland facing a shortened life should be able to get the absolute best care and support, no matter their postcode.”

Scotland’s only children’s hospice charity launches £20M appeal to transform care

‘More Than a Hospice’ will rebuild, renew and reimagine children’s palliative care across Scotland as stays at CHAS’ hospices increase by 45% in the last 3 years.

Children’s Hospices Across Scotland (CHAS) launches More Than a Hospice, a £20 million appeal to change how Scotland cares for dying children, no matter where they live, and ensure all families have real choice in joined up care, so no one faces the death of their child alone.

The bold £20 million initiative appeal will allow CHAS to meet rising pressure on children’s palliative care services by transforming how Scotland cares for its most vulnerable children and families.

Stays at CHAS’s hospices have increased by 45% in the last 3 years* underscoring the increasing pressure on services and the urgent need for facilities and world-class models of care to keep pace with families’ needs. The surge is being driven by medical advances meaning more children and families need specialist support over longer periods whether at home, in hospital or in hospices.

CHAS supports babies, children and young people with life‑shortening conditions, and the families who care for them, providing specialist palliative care. For families, that can mean months or years of round‑the‑clock care, exhausting routines and constant emotional and practical pressure, while trying to protect ordinary moments together.

More Than a Hospice is an urgent call to Scotland to recognise what children’s hospice care really means today, and to back a long‑term plan to ensure families continue to have choice, comfort and support for decades to come.

Caroline Johnstone, from Sauchie in Clackmannanshire, was introduced to CHAS when her daughter Ayla was born in 2011. Ayla lives with Edwards’ Syndrome and has been receiving support from CHAS for the past 14 years.

Caroline said: “Since Ayla was diagnosed, CHAS has supported us as a family at Rachel House in Kinross. CHAS makes sure we have a choice in care for Ayla. We feel part of a community of families who are going through the same challenges and experiences. 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.”

“Ayla absolutely loves the sensory room and going out for walks around the beautiful grounds. She is quite sassy and loves a bit of nonsense but is also tactile and affectionate and the staff all know her personality so well which is great”.

Rami Okasha, CEO at CHAS 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.

“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.”

The £20 million will allow CHAS to bring real choice to families as their child dies by:

  • Rebuilding Rachel House, Scotland’s first ever children’s hospice as a modern, flexible space designed around the needs of today’s families, including those caring for children with the most complex conditions.
  • Renewing Robin House so it continues to be a welcoming home‑from‑home where families can access specialist care, respite and support.
  • Reimagining care for the long term by strengthening children’s palliative care across Scotland, including closer working with the NHS and improving support for families at home at the end of life.

Together, these improvements will help ensure CHAS can continue to deliver highly specialist, family‑centred care as needs evolve, supporting families not just through the hardest moments, but through the long journey that often comes before.

To mark the launch of the appeal CHAS is asking people to ‘Make Their Mark’ on a giant fingerprint tree. Each print is a pledge to support CHAS More Than A Hospice Appeal and help transform hospice and palliative care for Scotland’s children and families, now and for the future.

The beautiful large-scale visual, created in partnership with artist Marion Deuchars, starts with a single fingerprint and grows with every addition from children and their families. It will create a lasting reminder that no family should face the death of a child alone.

Make your mark by donating today and ensure no one face the death of a child alone at chas.org.uk