29 Apr 2024
Children’s Hospices Across Scotland (CHAS) has published a brand new Strategic Plan which pledges to provide pivotal support to families of dying children at each critical stage of their palliative care journey.
The Unwavering Care 2024-2028 Strategy was developed following in-depth consultation and feedback from families and stakeholders. It sets out how no family ever has to face the death of their child alone, with CHAS providing support from the moment of diagnosis, to helping the child live well and by supporting the family after a child’s death.
To help raise the funds necessary to enable the plan, CHAS has launched a new fundraising campaign. The ‘Every Single Step’ appeal illustrates how families are supported at every single stage of a child’s palliative care journey.
Rami Okasha, CEO of CHAS, said: "Three children a week die in Scotland from an incurable condition. Our strategic plan sets out how we will provide unwavering care to children who may die young and their families, at every step on this hardest of journeys.
“This plan was created after in-depth consultation with our families and key stakeholders including staff and volunteers. Over 135 families shared what is important to them about CHAS. We heard directly from 77 children and young people through stories, art and play. These children and young people had used many different CHAS services, including hospices, care at home, family support, and joint CHAS / NHS teams in hospitals.
“Families told us there are three critical stages where they need CHAS – when they learn their child is seriously ill and may die young, helping their child to live well and also help them to die well with ongoing bereavement support. Our strategic plan is centred on these critical stages and what we will do to build upon the exceptional work we already do in these areas.
“Over the next four years, we will concentrate our efforts where we can have the most impact. Our nurses, doctors, and family support specialists will work across hospices, children’s homes and hospitals, providing tailored care for families in the places that suit them.
"We will continue to work with our wide range of partners including the NHS, councils, hospices, charities, government and our dedicated volunteers.
“Together, Scotland can deliver world class care when needed most – through the tough days of diagnosis, throughout a child’s life, at end of life, and after a child dies. To do this effectively however we need the continued support of the generous Scottish public. Every donation made to our Every Single Step appeal will make a real difference to the children and families we support nationwide.”
Donations can be made at www.chas.org.uk/donate or by telephoning 0141 779 6180.
The new CHAS Strategic Plan can be viewed from Monday 29 April along with all other CHAS publications here: https://www.chas.org.uk/about-us/our-vision/our-publications#CHAS-Plan
CHAS CASE STUDY
As part of the ‘Every Single Step’ campaign, a bereaved family from East Kilbride have spoken out about how they were supported by CHAS through every stage of their difficult journey.
Ainslidh Stevenson and Jamie McMillan welcomed their second daughter Amelia into the world on 10 April 2021. Amelia was a happy and settled baby who bonded with her sister Olivia, then 2 immediately.
Her family called her their “little brown mouse” as she loved having The Gruffalo read to her.
Amelia continued to hit all of her milestones but, when she reached about six months, Ainslidh noticed her little girl had started slumping a lot and was losing co-ordination. She would also later start to scream hysterically and her body would go rigid.
After initial tests came back normal Amelia was sent to Queen Elizabeth Hospital in Glasgow for an MRI.
Ainslidh said: “When the consultant came in to give us the results his words hit me like a sledgehammer. He said: ‘It’s really bad. There are severe changes in Amelia’s brain. If she has what I think she has then she doesn’t have long.’ We had just went to the doctor’s six days ago, and now someone was telling me our little girl was going to die.”
“Amelia underwent more tests, but quickly took a turn for the worse. Her heart started to fail and the doctors told us to say our goodbyes. It was agony, but the team put her into a coma to let her rest and give her a chance to fight. And boy, was she a wee fighter! Amelia made small improvements, eventually coming off her ventilator.
“We were so relieved, but then the consultant told us Amelia likely had Mitochondrial disease. He explained how it affects the part of every cell that creates energy. It was literally draining the power of life from her and they couldn’t even tell us how long she would live. We just wanted to make the most of the time we had.”
Ainslidh and Jamie were eventually allowed to take their baby daughter home to care for her there but were given even more heartbreaking news a few days before Christmas 2021.
“They told us Amelia would not live to see her second birthday. I held Amelia and cried the whole day. We only took her to hospital a month ago and our whole world was being ripped apart. Olivia just wanted to be an amazing big sister. Seeing her help Amelia open presents on Christmas morning is a moment I’ll cherish forever.”
Just a few months later, Amelia developed inflammation around her brain, causing seizures. The family were emotionally and physically exhausted.
This was when CHAS came into their lives and they were invited for their first respite visit to Robin House, a purpose built hospice facility in Balloch by Loch Lomond.
“We were anxious about going to a ‘hospice’ but Robin House was incredible,” Ainslidh recalls.
“As soon we arrived the team there instantly put us at ease. I just knew they going to do their very best for Amelia. At Robin House we got to be Amelia’s parents, not her carers and do normal things like take our girls to the pool which is something we’d never have experienced otherwise. Watching the girls doing something most families would take for granted was a special moment we’ll always hold on to. We also got to take Olivia to the nearby Sealife Centre for a wee day out, knowing Amelia was safe.
Sadly, after the family’s visit to the hospice, Amelia’s health continued to deteriorate and doctors gave the family the devastating news that her little body was shutting down.
“They asked us where we would like Amelia to die. In that moment we knew we had to take her back to Robin House. We went by ambulance to the hospice and they had a room ready where we could stay together as a family. I immediately snuggled up in bed with my baby girl, with Jamie and Olivia by our side. It was so peaceful. If we had to lose Amelia then it really was the perfect goodbye. Our ‘little brown mouse’ took her last breath in my arms on 29 July 2022, just 15 months old.”
CHAS continued supporting the family after Amelia’s death, offering emotional support and helping the family make funeral arrangements.
“Coping with the death of our baby and explaining to Olivia why her sister can’t come home would’ve been impossible without CHAS,” said Ainslidh.
“We made imprints of her little feet and hands to keep, and the amazing staff played lullabies and read her stories. Even though she was gone it felt so nice she was still being cared for and we got to say goodbye to her in our own time.
“The Robin House Chaplain helped us plan her service. I wanted to read The Gruffalo, but when I realised I’d never get through it, CHAS made sure I got to record it so we could play it for our little brown mouse one last time. Even as we left to go to the funeral, all the staff stood outside creating a guard or honour for our darling girl.
“As incredible as CHAS was during Amelia’s short life, they were even more amazing in the days after her death. I don’t have the words to thank them. That’s why we are honoured to be part of this fundraising appeal in Amelia’s memory to help encourage more people to donate to help this amazing charity help more families like ours.”
Pictured: Amelia McMillan with her mum and dad Ainslidh Stevenson and Jamie McMillan and her big sister Olivia.
