A new fundraising campaign has been launched by Children’s Hospices Across Scotland (CHAS) to shine a light on the vital role nurses play in caring for dying children, as the charity witnesses a surge in demand for its services.
‘The Way We Care Appeal’ celebrates the dedication of CHAS nurses who have contributed over 80,000 hours of specialist care over the last year (April 1 2023 to 31 March 2024) while, at the same time, bed night provision at the charity’s two hospices, Rachel House in Kinross and Robin House in Balloch has increased by 43%.
The number of hours of outreach nursing care, which is provided in the homes of families, also rose by 45% during the same period.
These trends highlight CHAS hospices’ growing capacity to provide essential care and support to more children and their families across Scotland and reflect the need for the charity to significantly grow its fundraising income to meet the demand for services.
CHAS knows from previous research such as the Children in Scotland requiring Palliative Care (ChiSP) 3 report that, because of medical advances, more children with life-shortening conditions are living longer and more premature babies are surviving childbirth, meaning more seriously ill children require the services of CHAS than ever before.
To cope with the increase in demand for services the charity recently launched a four-year Strategic Plan. The Unwavering Care 2024-2028 Strategy
sets out how CHAS will provide vital support from the moment of diagnosis, to helping the child live well and by supporting the family after a child’s death.
CHAS chief executive officer Rami Okasha said: “We are delighted to be launching The Way We Care Appeal to raise vital funds and build awareness about the dedicated work of our nurses who have contributed an incredible 80,000 hours of specialist care over the last year.
“Three children a week die in Scotland from an incurable condition and demand for our services is growing. The rate of medical advance now is incredible. Doctors are helping many seriously ill children live for longer than ever expected, but they need a lot more care, and for a lot more time. It creates huge demand which everyone is struggling to fill so we need children’s palliative care like never before.
Leah and family at Rachel House
“Over the course of the last year CHAS directly supported 419 babies, children and young people across the country, and hundreds more in hospital palliative care teams funded by CHAS. We provide support for the whole family – parents and siblings – and have supported nearly 2,000 family members of seriously ill children this year.
“Providing nursing care for children who are so ill is hard. It’s really hard. Our nursing teams do an amazing job, day and night.
“Our ambition is that no-one should face the death of their child alone. Our newly published Unwavering Care Strategy sets out exactly how we support families of children who may die young at each stage of their palliative care journey. We will be there when families learn their child is seriously ill, help them to live well in whatever time they have got, and also help them to die as well as possible, with ongoing bereavement support.
“We aim to build upon the exceptional work we already do in these areas by concentrating our efforts where we can have the most impact. Our nurses, doctors, and family support specialists will continue to work across hospices, children’s homes and hospitals, providing tailored care for families. We will also continue to work with our wide range of partners including the NHS, councils, 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 beyond. To do this effectively however we need the continued support of the generous Scottish public. We are grateful for every donation made to The Way We Care Appeal which will make a real difference to the children and families we support nationwide.”
Senior Staff Nurse Gillian Murdoch with Leah Barclay
CHAS case study – Senior Staff Nurse Gillian Murdoch and CHAS referred child Leah Barclay
.Gillian Murdoch works as a Senior Staff Nurse at Rachel House and is keyworker to seven-year-old Leah Barclay from Aberdeen, who was born with only half a heart as well as four other serious heart defects.
Leah has been coming to Rachel House with her family since she was very little and calls it her ‘happy place’.
Incredibly, the brave youngster, who is one of only two children in the UK to have such a rare cardiac condition, recently celebrated her seventh birthday, despite not being expected to live a single day.
Gillian said: “I feel privileged to be able to care for this amazing little girl who has been through so much in her young life, much more than any child should ever have to go through.
“Leah’s condition is not immediately obvious but her condition is extremely serious. She has had three open heart surgeries, the first of which took place when she was just eight weeks old and she has been sedated for various medical procedures an unbelievable 27 times.”
Having experienced so many serious operations from such a young age, Leah is naturally very frightened of hospital settings but does not feel the same way about Rachel House.
Gillian said: “She absolutely loves coming here and says she always feels safe here. It is like her wee sanctuary and her mum says she counts down the sleeps on her calendar at home until she can come back to her happy place.”
“Leah loves a chat so that’s the first thing we do when she comes into Rachel House. She likes to know everything that’s happening in-house during her stay and who is going to be looking after her during the day and at night. I talk her through all of that and then we let her decide what she’d like to do.
“She likes setting up her toys in her room and she absolutely loves the soft play so that’s usually her first port of call! It's lovely to see the whole family relax and unwind when they’re here too. Leah’s mum and dad Nicola and Simon can catch up on their sleep, Leah’s two older sisters Sasha and Mia can just chill out or read a book and not have to worry about Leah’s care.
“The family know I am on hand to help offer support and advice with anything, including medical issues that can sometimes feel a bit overwhelming.
“Providing care and support to families is the part of my job I love the best and helping them make special memories together. It is especially such a privilege at end of life. It can be sad and emotional but I am part of a truly amazing team at Rachel House and we all support each other.”
Despite all Leah has been through in her young life, mum Nicola describes her as “the happiest little girl” and “a wee ray of sunshine.”
She said: “I am so proud of her. She’s such an inspiration and she has taught us all so much about life.”
“From our very first visit to Rachel House we felt at home and we felt safe. Leah is such a little character and loves the attention, especially from Gillian. They have a special bond and Gillian just gets her.
“I have also developed a really good relationship with Gillian and really respect her honesty with me. She doesn’t sugarcoat anything and is always open with me while also being caring and understanding.
“People say to me they don’t know how I keep going and I tell them I have no choice but to keep going and to be strong for Leah. I’m proud of Mia and Sasha too for the way they love and care for their little sister. They love her to bits and just want to treasure every moment with her.
“We know Leah is not a candidate for further cardiac surgery or a heart transplant so we are very aware that every single moment we spend with her is a blessing. That is why we will continue to cherish each and every moment we have left with our wonderful little girl and make the most of all our future respite stays at Leah’s happy place, Rachel House. We can’t thank CHAS enough for helping us to make such precious memories together as a family that will last a lifetime.”
Donations to The Way We Care Appeal can be made at www.chas.org.uk/donate or by telephoning 0141 779 6180.