Children’s Hospices Across Scotland (CHAS) has launched the Summer Solace Appeal in response to a surge in demand from families seeking urgent respite care.
Over the past 12 months, the charity has seen a 100% increase in families seeking its respite services – a dramatic rise that has sparked the need for additional funding.
For over 30 years CHAS has been caring for vulnerable children nationwide through a wide range of dedicated services including respite and palliative care at its two hospices, Rachel House in Kinross and Robin House in Balloch. The charity also offers a CHAS at Home service that brings specialist nursing care into the homes of children and has doctors and nurses based in hospitals across the country.
Research has shown that three children die each week in Scotland from a life-shortening condition. Over the last year CHAS has directly supported over 500 babies, children and young people. The charity has also supported nearly 2,000 family members of seriously ill children with 1,684 CHAS at Home visits and 266 Home Support Volunteer visits.
CHAS believes no one should face the death of their child alone and is determined, through the Summer Solace appeal, to protect its vital respite services so that more families can be supported to enjoy precious time together filled with as much happiness and joy as possible for however long they have left.
CHAS CEO Rami Okasha said: “There are thousands of families across Scotland having to deal with the unthinkable reality that their child may die young. We remain utterly focused on being there for families at every stage of their palliative care journeys, from the moment a parent learns their child is seriously ill and may die young, helping them live well, and providing dignified end-of-life care.
“Our respite services are a lifeline for carers and families who are often at breaking point. As well as supporting children in their final days, respite care at our hospices provides specialist breaks for families where highly skilled nurses care for a very ill child while the rest of the family get the chance to rest and be together. Our CHAS at Home service is also vital as it brings the dedicated care of experienced nurses directly into the homes of families right across Scotland.
“We’re seeing more people needing urgent support, and without immediate action, we simply won’t be able to meet this growing demand. We know we can’t reach everyone who needs us without the kindness and generosity of our supporters, so we are asking the Scottish public for their help by donating to this very important appeal this summer.”
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CHAS case study – Chloe Thomson
For Midlothian mum Mechelle O’Hara, being able to access both hospice and at-home care has been “an absolute lifeline”.
When her daughter Chloe (Thomson) was born three months early in September 2019 she couldn’t breathe properly and was immediately whisked away by medics.
All Mechelle wanted to do was to hold her baby girl in her arms but instead could only watch in horror as she was placed in an incubator, wired up to various tubes and put on a ventilator.
Tests revealed that Chloe had contracted sepsis and meningitis in utero and that she had one lung bigger than the other. Doctors went on to also discover a deadly fluid-filled cyst blocking Chloe’s airway which required immediate surgery.
Mechelle, who is also mum to Robbie 13 and Aimee, 14, said: “They told me there was good chance I would never take her home and if I did, she would be severely disabled. I was devastated and didn’t stop crying for days.
Chloe required an urgent heart and lung bypass but, at three pounds, she was too small for surgery. It finally went ahead when Chloe was seven weeks. Weighing just five pounds, she was one of the smallest babies ever to undergo the high-risk 8-hour procedure.
Unfortunately, surgeons could only partially remove the cyst as it was attached to her airway and fully removing it would have ended Chloe’s life.
After the operation Chloe was put on life support, and her parents were informed she would need reconstructive surgery on her lungs. An MRI was carried out which showed Chloe also had severe brain damage.
A palliative care team were enlisted to discuss end of life plans as doctors did not expect her to survive for long.
But Chloe had other plans and, against all the odds, grew stronger with every passing day. She was finally able to go home in March 2020 after 121 days in the Neonatal Intenstive Care Unit (NICU) and 49 days in the Paediatrics ward.
When Chloe was nine months, the family enjoyed their first visit to Rachel House.
Mechelle, who would like to train to be a nurse in the future, said: “We were given such a warm welcome by all the staff and made to feel at home straight away.
“Prior to our visit Chloe had not been sleeping very well and was very unsettled and crying a lot, but we didn’t know why. When we were at Rachel House Dr Pat examined her and told me Chloe was having infantile spasms, a serious form of epilepsy which had gone undetected for two months.
“Chloe started on medication for it and was a different child after that and she has been our smiley little Chloe ever since. I will always be grateful to Dr Pat for his expertise and advice and for taking the time to get to know my beautiful girl.”
Over the last five years Chloe and her family have returned many times to Rachel House for respite visits.
Mechelle said: “She just loves everything about the place. She’s really sociable and loves interacting with people, listening to people chatting and just getting attention. She also enjoys doing arts and crafts with the Activities Team, getting hand and foot massages and going in the pool and the sensory room.
“Chloe also loves the music therapy she gets at Rachel House and loves when Rachel, the in-house musician plays Disney songs or nursery rhymes and sings to her. She smiles so much and you can hear her trying to match the pitch sometimes and really concentrating on the tone.
“For me, what I love about going to Rachel House is just being able to relax and not have to worry about anything when I am there as I know Chloe is in safe hands and is being well looked after. Lots of the nurses and other members of staff have known her since she was a baby so there have been lots of cuddles over the years and Chloe has formed such a beautiful bond with them all.
“I remember I was up in my bedroom one day and I could hear Chloe laughing. I looked out the window and there she was being pushed on the swing in the garden, smiling and giggling so much and just having the best time. It was such a heartwarming moment to witness.
“I also enjoy meeting other families at Rachel House. It is so nice to just sit and have a conversation with people who understand what it’s like having a child with complex needs.”
Chloe also receives CHAS at Home support, which enables Mechelle to spend time with her other children, catch up on admin or housework, attend appointments or go food shopping.
“It is a relief to have this time and freedom without having to worry about Chloe or thinking about when her next medication is due. The CHAS at Home team take over all her needs and Chloe loves them all and has lots of fun with them. Sometimes they take her out for a walk or to the cinema and other times they just stay at home and do fun activities with her. If there are two words to describe what CHAS at Home gives our family, they’re solace and joy.
“Life without CHAS’s support would be really difficult. They have been there since Chloe was a little baby, so pretty much from the beginning of her life. I honestly don’t know how I would have ever got through the last five years without their support.
Now five years old, Chloe still faces lots of challenges due to her complex needs. She has full body cerebral palsy, epilepsy, is fully tube-fed and completely non mobile, non-verbal and developmentally delayed.
Despite all her difficulties, Mechelle says her daughter is “the happiest and most resilient child you could meet and faces every obstacle with a smile”.
“She has her own wee personality and a great sense of humour. She laughs at the most ridiculous things, she is so affectionate and loves getting lots of cuddles. She is just the most happy, cheeky little girl who is loving life and meeting her own milestones in her own time and in her own way.
“CHAS helps me feel less alone and I am so grateful for all their help over the years and for their continued support. I really couldn’t imagine life without CHAS.”
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Pic cap: Mechelle O’Hara and daughter Chloe Thomson with CHAS at Home nurses Sinead O’Sullivan and Diane Smith
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- Children’s Hospices Across Scotland (CHAS) provides unwavering care to children who may die young and their families, at every step on this hardest of journeys.
- We provide support in the early days after a child is diagnosed with a life-shorting condition. Having a very ill child means a family’s life changes enormously, and we are there to help every family member emotionally, clinically, and practically.
- We provide integrated palliative and end of life care as well as respite care for the whole family in our two hospices, Rachel House in Kinross and Robin House in Balloch.
- Our outreach team operates in every local authority area – providing highly skilled nursing care for children in their own homes (often in partnership with local teams), as well as a full family support service. This includes social work, income maximisation, energy advice, spiritual and bereavement support, transition to adult services for 16 – 21s, and therapeutic play.
- There is a joint CHAS/NHS specialist team in every children’s hospital in Scotland. The only specialist Paediatric Palliative Medicine posts in Scotland are funded by CHAS. Our Diana Children’s Nurses provide specialist support alongside the NHS in Glasgow, Edinburgh and Aberdeen.
- We are there at the end of life, supporting children to die with dignity, in accordance with their and their parents’ wishes and we also help in the difficult days after a child dies and can offer bereavement support in the years ahead.
- The wonderful letters which form our logo are created by the children and families that use our services.
- Follow CHAS on X and Instagram: @supportCHAS, or like us on Facebook: https://www.facebook.com/supportCHAS
- For further information, visit CHAS at www.chas.org.uk.
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