'Our savings are vanishing': Families of children fighting for their lives need quicker financial help
Edinburgh and Lothian families are calling for the reform of a well-intended Government fund that is "failing the families that need it most"
Hector Tully is far from an ordinary little four-year-old boy. Like the mythological Prince of Troy who shares his name, young Hector has proven to be an indomitable fighter.
Born at just 23 weeks old, and weighing just 1 pound and 6 ounces, he was not expected to live. That he did owes everything to the dedicated staff at Simpson Neonatal Unit at Edinburgh Royal Infirmary, and at the Royal Hospital for Children and Young People – and to the love and dedication of parents Marie Clare and Angus.
Thirty-three surgeries later, and counting, he is a typically happy youngster who leads a far from typical life, but one that is sadly not unique.
Kobi is younger, born in the summer of 2024, but like Hector was born prematurely – at 26 weeks, when he weighed a few ounces over 3 pounds. He suffered a brain bleed that threatened his young life, and suffered up to ten seizures a day. Now, 16 surgeries later, his struggle continues. He is supported with love by parents Kirsty and Daniel, who live in East Lothian. “Sixteen times we’ve handed him over, not knowing if he’d come back,” they said.
“Praying he would survive”
It’s a fear that Hector’s mum Marie Clare is all too familiar with. “When Hector was born, we were told he would only be with us for a day or two and that we should prepare to say our goodbyes. For the first two months of his life, we were just focusing on getting to breakfast, then lunch, then dinner – praying he would survive.”
In his first year of life, Hector went through 15 operations, and even after being allowed home after long months of intensive care and treatment, the family was forced to endure 25 visits to A&E within the months that followed.
For both families it has been a nerve-shredding, love-filled rollercoaster. And it has also brought a financial cost, balanced in part by a well-intentioned Scottish Government fund designed to support families in such crises. The Young Patients Family Fund has been cut by almost 40% in the recent budget, bad enough, but the Edinburgh Children’s Hospital Charity also maintains its format – a paperwork heavy reimbursement process rather than a streamlined cash-first approach – is acting as a barrier to help.
As the inventor and businessman Thomas Edison said: “A good intention, with a bad approach, often leads to a poor result.”
Kobi’s parents have contributed to the manifesto, “Families on the brink,” the charity has now sent to policy-makers as we approach the Scottish Parliament elections this May.
Crippling financial strain
In it they say: “Caring for Kobi is the greatest privilege in the world. But it’s exhausting and relentless. And it’s such a lonely journey. We don’t remember the last time we felt at ease, content. We used to have little bits of ourselves outside all this – football, the gym. Now, we go days without having a shower. Sometimes, you wish someone would ask, ‘But how are you?’
“When the fear feels overwhelming, his smile pulls us back. As a family, we can count on one hand the number of days we’ve had out together. That’s all we want – more time, more chances to make memories. We hold on to the hope that one day, this will be possible.
“And the financial strain is crippling. Living in and out of hospital, travelling back and forth to East Lothian, paying for food, taxis, the upkeep of a house we barely see. Our savings are vanishing. And it’s likely we’ll never work again.”
Roslyn Neely, the charity’s Chief Executive, told the Inquirer: “The current system, while well intentioned, is failing the families who need it most. Parents already stretched to the limit are being pushed into a deeper financial crisis by reimbursement policies that ignore the realities of everyday life.”
Marie Clare is keen to emphasise her appreciation for the remarkable care Hector has received. “The children’s hospital is an amazing place, and I can’t speak highly enough of all the staff there, or of the work the ECH Charity does to support the families as well. I am not sure what we would have done without them, and we are thankful for the NHS.
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“In those early days when he needed to be resuscitated many times, it seemed like his survival was under threat every hour of the day. We had no headspace for anything other than being with him, doing everything we could. We were determined to make his life, however long that was to be, as full of love as we could. Obviously there is a huge emotional stress, but there is also a financial one.
“It was a nurse who told me about the fund. I hadn’t known anything about it, or even thought about it, but she put us on to it and the staff helped us fill out the forms, which needs to be done line by line, providing a lot of information. Without their help I don’t think I would have managed it, but when we did get money which was backdated over several months it was a significant help. And we didn’t have to travel as far as many other people, coming only from Leith.
“For people with very sick children, the hospital becomes a real community full of love. I really support the charity in what they are trying to do - a cash first policy would really help parents who have no headspace for forms. I remember one mum who had travelled from much further away, going around asking for money because things had become so difficult for her. A nurse noticed, and gently intervened and helped her access the fund also.”
The fund was set up to help the parents, carers and families of young inpatients aged under 18 who spend more than 24 hours in hospital with travel, food and accommodation costs in visiting. It was cut from £5 million when the fund was set up in 2021, first to £4 million in the intervening years and then £3.2 million in the 2026/27 financial year announced in the Scottish Budget last month.
The charity Young Lives vs Cancer maintains the Fund should be expanding instead, with some young cancer patients already facing delays to their treatment due to financial strain, and has also launched a manifesto ahead of the May election.
