Children’s Hospices Across Scotland (CHAS) has launched the Joyful Memories Appeal – a new fundraising campaign which aims to ensure that families of children with life-shortening conditions receive access to valuable respite care to enable them to make special memories together.
Respite for the whole family is one of the many valuable services CHAS provides at its two hospices, Rachel House in Kinross and Robin House in Balloch. Families can come to stay and enjoy precious time together with the stress of all their caring pressures being taken away.
With CHAS witnessing a 50% rise in hospice admissions over the last three years, rising from 501 in 2022/2023 to 756 in 2024/2025, it is clear that demand for respite services is increasing.
The Joyful Memories Appeal coincides with the publication of a new national report by Shared Care Scotland following a survey carried out in 2024 into unpaid carers’ experiences of short breaks and respite care.
One of the key findings of the survey found that out of the 1,000 respondents, 60% said they often or always feel the need for a break, however, only 7.5% regularly frequently receive breaks from their caring role.
The release of the survey findings is timely as the Scottish Government is currently reviewing plans to introduce a legal ‘Right to a Break’ for unpaid carers as part of the revised social care reform plans.
The Shared Care Scotland survey also revealed that a large proportion of carers (37%) expressed a need for supported holidays to allow them to spend time with those they care for, while benefiting from additional care support.
Rami Okasha, CEO of CHAS, said: “The number of children living with life-shortening conditions is going up, as is the demand for our services.
“CHAS is determined to ensure that as many families as possible enjoy precious time together filled with happiness and joy before a child dies. One way is to offer specialist breaks for families where highly skilled nurses care for a very ill child and the rest of the family get to rest and be together.
But this would not be possible without our generous supporters who give love and strength to those in the greatest need. We are grateful to everyone who donates to our Joyful Memories Appeal to help the families we support make wonderful memories together that will last a lifetime.”
Donations to the Joyful Memories Appeal can be made at www.chas.org.uk/donate
Shared Care Scotland’s ‘Exploring Unpaid Carers’ Experiences of Short breaks and Respite Care report can be viewed in full here: https://www.sharedcarescotland.org.uk/policy-practice-development/carers-survey-research-report-2024/
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Picture caption: Chloe and Chris Smith making memories with daughter Ellie in the pool during a respite visit at Robin House
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CHAS case study – Ellie Smith
One family who personally understand the importance of family respite offered through CHAS and being able to make memories to last a lifetime are the Smiths from Airdrie.
Chloe and Chris Smith’s daughter Ellie was diagnosed with a rare brain disorder called Miller-Dieker syndrome when she was just over two months old.
This cruel, rare condition caused the surface of Ellie’s brain to be completely smooth and meant she would suffer from seizures, developmental delay, weak muscle tone, and even struggle to swallow or breathe.
Ellie and her parents visited Robin House for respite support when Ellie was 17 months old, staying in the hospice for three nights.
Chloe said: “The staff at Robin House made us feel so welcome and because we had never left Ellie before, we said we wanted her to be in the room with us rather than in her own room. This wasn’t a problem and they said we could do whatever was best for us.
Chris said: “That really put our minds at rest and once we settled in, we went out for a family walk together in the sunshine. We hadn’t been out for a walk with Ellie in her pram for so long because she’d had been ill with a respiratory virus, so it was amazing to get out and about.”
Some members of the couple’s extended family also came to Robin House for a day visit and got to spend time with Ellie away from a hospital setting.
“Our favourite part about our stay was taking Ellie swimming in the hydrotherapy pool. She absolutely loved it! Ellie really enjoyed bath time, so we knew that she’d love the pool because it was relaxing and warm for her.” said Chloe.
“It was just amazing seeing Ellie chilling out in the pool, she even fell asleep. Staff took photos and videos and played music. Our family also got to see her in the pool which was really special. It really was the best part of being at Robin House and fulfilling that wish,” said Chris.
“The sensory room was also very enjoyable – Ellie kept falling asleep in it! I think all the twinkly lights and the darkness was really calming for her,” said Chloe.
What the couple appreciated most about coming to Robin House was the chance to have what felt like a family holiday and spend quality time together, away from the hospital.
Chloe explained: “We describe the time we had a Robin House as our wee holiday. We would never have been able to get away anywhere together as a family because of Ellie’s condition and all the medical equipment and the oxygen that she needed.
“It felt like we belonged there with Ellie. We had as much or as little support as we wanted and there were other families there too, who understood what we were going through. Being at Robin House allowed us to be Ellie’s mum and dad and enjoy our time with her. We were able to relax and enjoy ourselves and staff supported us in any way we wanted.”
The family were keen to book another visit to Robin House and make more unique memories but sadly Ellie became very unwell and was admitted to hospital shortly after her visit to the hospice.
As her condition deteriorated, Chloe and Chris were supported by CHAS at Home nurses so Ellie could spend her last days at home, surrounded by her loving family.
Ellie passed peacefully at home in her mum’s arms and with her dad by her side on the 9th November 2022, aged just 20 months and five days.
Chloe said: “Ellie was such a contented wee girl, she would smile with her whole face which was magical. She was always happy but on the rare occasion she wasn’t she’d let you know! She gave you an Ellie frown and a side eye, she had a very expressive face. She was definitely a diva but also the strongest, most amazing wee girl.
“I know that we only visited Robin House once but one of the best things was that we were able to fulfil our wish to take Ellie swimming. It meant so much to us. CHAS gave us the chance to create so many special memories and it’s something we’ll treasure forever.”
Chloe and Chris recently welcomed another baby into their family, a little boy called Ruaridh who was born on 16th March 2025.
Chloe said: “We were overjoyed when Ruaridh was born and it was made even more special that he arrived on Ellie’s original due date of 16th March, even though I was induced on the 15th.
“I always say Ellie is a big sister now and I tell Ruaridh he will always be Ellie’s little brother.”
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