CHAS is calling on politicians of all parties to stand alongside the 16,700 families across the country facing the terrifying heartbreak that their child may die young.
The charity, which is the single national provider of children's hospice services in Scotland, has launched its manifesto ahead of the Scottish Parliament election. This comes at a time where the numbers of children with life-shortening conditions is higher than ever and many families are feeling particularly isolated and vulnerable due to the COVID-19 pandemic.
Informed by the children and families it cares for, the manifesto sets a vision that children with complex palliative care needs should have timely access to care and support, where and when it's needed, backed by sustainable funding.
To achieve this, CHAS's manifesto sets out five crucial calls that it is asking candidates across all political parties to back:
The latest research shows that there are more than 16,700 babies, children and young people across Scotland who may die from a life-shortening condition. Many are stable, but three children each week die of a life-shortening condition in Scotland. The numbers are going up.
Emily Kidd is 16 years old and is just one of the young people that helped CHAS develop its manifesto. Emily was referred to CHAS by her local hospital over five years ago and has received support from Rachel House, CHAS at Home and since the pandemic, through CHAS's virtual hospice. She lives in central Edinburgh with her family and has suffered from Osteogenesis imperfecta (OI), a genetic disorder that prevents the body from building strong bones.
Emily said: "We are important, we matter. It's hard knowing you're going to die young. It's difficult to live like that, you want to fit it all in, everything, 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.
"At the start of the pandemic, I was put into the shielding category. It was so hard not even being able to go on a walk and see my friends. 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."
Echoing the calls in the manifesto, Emily highlighted that government must act now to help improve the lives of children across Scotland just like her. "Now is the time for government to show their support."
Rami Okasha, CEO of CHAS, said: "Children with life-shortening conditions might live shorter lives, but CHAS makes sure their time is filled with love, compassion and care.
"Much has been achieved over the course of the last Parliament, but the pandemic has put a further strain on these families. Scotland has one of the best children's palliative care systems in the world, but many families still don't have all the support they need right now. It's a huge strain. Working together, we can ensure that every child has the best possible start in life, and that when the time comes, no family has to face the death of their child alone.
"The numbers of children with life-shortening conditions are going up. The need for care is greater than ever. We are asking politicians from all parties to look at a range of actions that will truly make a difference to these families, including bespoke support at the toughest times like when a child dies or grows into adulthood with very complex needs, better financial support for struggling families, sustainable funding for children's hospice care, and making sure there is a new generation of nurses and doctors skilled in supporting children with short lives. Politicians have a key role in helping keep the joy alive even in the face of death."