Children’s Hospices Across Scotland (CHAS) have published a manifesto for children’s hospice care in Scotland ahead of the parliamentary elections in May.

In the release, CHAS is calling on politicians of all parties to stand alongside the 16,700 families in Scotland that are facing the heartbreaking prospect that their child may die young.

The manifesto has been co-created by the children and families CHAS cares for, setting out that children with complex palliative care needs must have timely access to care and support, where and when it’s needed, backed by sustainable funding.

Emily Kidd, 16, is one of the young people that helped CHAS develop the manifesto. She has Osteogenesis imperfecta (OI), a genetic disorder that prevents the body from building strong bones.

Emily, who lives in central Edinburgh with her family, was referred to CHAS by her local hospital over five years ago and has received support from Rachel House, CHAS at Home, and CHAS’s virtual hospice since the pandemic began.

“We matter”

 “We are important, we matter” she says. “It’s hard knowing you’re going to die young. It’s difficult to live like that, you want to fit it all in and you want to do everything before it’s too late.

“Can you imagine how difficult that is to deal with every day, knowing what’s going to happen? It’s devastating. I’d love to see more people with disabilities in political roles, someone to advocate on our behalf. I hope that’s something that might happen in the not so distant future. I’m looking forward to a brighter time ahead. 

Emily has had to shield since the start of the pandemic due to her condition. “It was so hard not even being able to go on a walk and see my friends” she explains. “I was constantly looking at the same four walls and the uncertainty around everything made things much tougher.  

“My mental health has been up and down throughout – I’d describe it as a choppy sea. Juggling school work and missing out on things that I’d usually be able to do made me think that there was just no point anymore. Luckily for me, CHAS was there to lift my spirits. I enjoyed their weekly Zoom youth club - it made me feel less alone and supported. I’d really just like a hug – it’s the simple things that mean the most.” 

The need for government support

Echoing the calls in the manifesto, Emily says that the government must act now to help improve the lives of children just like her. “Now is the time for government to show their support.”

CHAS’s manifesto sets out five crucial calls that it is asking candidates across all political parties to back:

  • Continued sustainable funding for children’s hospice care in Scotland over the next 5 years
  • A new national plan for palliative care in Scotland that addresses the needs of children
  • More specialist training for health and social care staff, to meet increasingly complex needs
  • Better financial support for struggling families, including after a child dies
  • Bespoke support for children with complex needs living into adulthood

You can read the manifesto in full by visiting CHAS – Time is Precious, Time to Act