A severely ill teenager has told politicians “we matter” after helping CHAS write a new manifesto demanding more help for children with life-shortening conditions.
Emily Kidd, 16, who has received support from CHAS at their Rachel House base in Kinross for the past five years, suffers from Osteogenesis imperfecta (OI), a genetic disorder that prevents the body from building strong bones.
Children’s charity CHAS released a manifesto calling on politicians of all parties to stand with the 16,700 families in Scotland facing the terrifying heartbreak that their child may die young.
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.”
Emily opened up about how difficult the pandemic had been on her and her mental health.
“At the start of the pandemic, I was put into the shielding category,” she said.
“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.”
CHAS – Children’s Hospices Across Scotland – made the plea ahead of the upcoming Scottish Parliament elections where the charity outlines five crucial points they are asking parties to back.
The charity claims that the number of children with life-shortening conditions is now “higher than ever” and many families are feeling isolated due to the Covid-19 pandemic.
The five steps that CHAS are calling for are:
- 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
Rami Okasha, CEO of CHAS, told politicians they had a key role in “helping keep the joy alive in the face of death”.
“The numbers of children with life-shortening conditions are going up,” said Rami.
“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.”