The family of a boy who died at the age of 11 have urged politicians to back calls for more support for hospices for children.
Ryan Morgan, who was born with an undiagnosed condition, was supported by the CHAS at Home team and spent time at the charity’s Rachel House in Kinross.
Charity staff also provided post-bereavement support to his family after he sadly passed away on June 21, 2014.
Ryan’s mum Julie described the support the family received as a “lifeline” and is now calling on politicians and candidates to get behind the Children’s Hospices Across Scotland’s recently launched manifesto ahead of the upcoming Scottish Parliament elections.
The manifesto aims to ensure specialist care is available and accessible for everyone who needs it in the country.
The manifesto, called Time is Precious, Time to Act, 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.
Julie said: “The death of a child is indescribably devastating and we will always be grateful to the entire CHAS team.
“The support we received as a family when we lost Ryan was unbelievable, I honestly can’t begin to explain the difference CHAS made for us all at the absolute worst time in our lives.
“I cannot imagine getting through those days, weeks and months without their support and it is heart-breaking that CHAS is not currently able to reach every child who needs their support as yet which is why I am calling on politicians to back the charity’s manifesto to ensure that specialist care is available and accessible for everyone who needs it across the country.”
‘The pandemic has put a further strain on families’
CHAS is asking candidates and current politicians to back the five crucial goals identified in the manifesto.
This includes calls for continued sustainable funding for children’s hospice care in Scotland over the next five years and a new national plan for palliative care in Scotland that addresses the needs of children.
It also highlights the need for more specialist training for health and social care staff to meet increasingly complex needs, better financial support for struggling families including after a child’s death and bespoke support for children with complex needs living into adulthood.
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.”