Nearly 17,000 babies and children with life-shortening conditions across Scotland
Children’s Hospices Across Scotland (CHAS) is urging Scots to help the charity in its aim to provide more respite stays for children with life-shortening conditions.
Research conducted by CHAS found more than two thirds (69%) of families supported by the charity identified gaps in the care and support they receive for their dying child.
CHAS said the findings highlight the urgent need for more consistent social care support and more respite care for families who are often at breaking point.
Currently there are over 16,700 babies and children with life-shortening conditions across Scotland with CHAS launching its Little Rays of Sunshine campaign to raise money to help as many children and their families as it can.
Sue Hogg, Director of Children and Families at CHAS said: “There are thousands of families across Scotland dealing with the unthinkable reality that their child may die young.
“It is not easy for these families to jump on a plane for a holiday or plan too far ahead for any sort of break away together which is why the respite stays we provide at our hospices are so precious.
“Families are made to feel at home, enjoy home cooked meals and a relaxing night’s sleep, safe in the knowledge that their child is receiving the highest level of care.
“CHAS is determined to provide this service to as many families as possible but we’re reliant on the great Scottish public’s loving kindness. It is their donations to our Little Rays of Sunshine appeal that make these lifeline breaks for families possible.”
Amanda Flood from Aberdeen said staying at CHAS’s Rachel House always “feels like a holiday in the sun” to her family after her son Peter was born with down syndrome and was not expected to survive his first night in hospital.
Now, aged four, Peter continues to fight to live every day.
Amanda, who had to give up her job as a clerical worker to become Peter’s full-time carer, said: “I had been wary of coming to the hospice as at the time I associated it with end of life.
“As soon as we walked through the doors though my feelings changed. We were made to feel welcome and it felt more like a hotel than a hospice. We felt at home, and we were so grateful of this break as we were exhausted, physically, mentally and emotionally and running on empty.
“The staff not only took great care of Peter but of us too, there was always someone to listen to us and ensure we had everything we needed. At mealtimes there was always an array of delicious food for us, all freshly prepared by the amazing chefs.
“Peter was still very poorly but we were able to go for walks together and because the nurses were taking care of him I was able to just be mum for the duration of the visit. We were able to relax and rest together while Peter was cared for. It was so lovely being able to just sit and have a coffee or a meal together and also just have a shower or a bath in peace without being shouted on or listen for any alarms going off.
“Peter loves Rachel House and squeals with excitement when we turn in the driveway. We, as a family affectionately refer to it as the 'party house' as Peter has so much fun there and gets to run wild and free.”