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.”
