Edinburgh Children’s Hospital Charity says the Young Patients Family Fund is failing the families who need it most
Edinburgh Children’s Hospital Charity (ECHC) has launched its manifesto – Families on the brink – ahead of the Scottish Parliament Elections calling for an overhaul of the Young Patients Family Fund.
Roslyn Neely, CEO of ECHC said: “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.”
The charity has outlined measures in its manifesto to change the system to a cash-first approach over reimbursement as well as expanding the criteria to cover families attending regular outpatient appointments, rather than just inpatient care.
ECHC provides seriously ill children and their families with the extra support they need when facing a potentially life-changing hospital visit. It sees first hand the number of families who simply can’t afford to pay upfront for travel, food, or accommodation – let alone wait weeks to be reimbursed.
For some families, even when they have been reimbursed the money doesn’t reach them as it can be swallowed by overdrafts or used to repay public debts the moment it hits their account. The fund also doesn’t support families who don’t have a bank account or are unable to navigate the complex claims process.
ECHC believes the eligibility criteria should be expanded beyond inpatient appointments as outpatient appointments can be just as costly for families. Children who need frequent outpatient care – like chemotherapy or treatments for chronic conditions such as Crohn’s – often attend more than five appointments a year. That results in five days of missed work. Five days of travel costs. And, five days of disruption to school, siblings, and family life.
Roslyn Neely added: “Ahead of the Scottish Parliament Elections we want policymakers to show families who have a young person regularly visiting or staying in hospital that they understand their reality. They understand that families who are already exhausted and stretched to their limits, feeling unsupported by the system, don’t have to be financially drained as well.
“Simple changes to the Young Patients Family Fund would ease the pressure on families who are struggling, and make what could be a potentially life changing or life threatening experience, just a little bit more manageable.”
The Scottish Government budget for 2026/27 has allocated £3.2 million to the fund, a reduction from £5 million from when it was introduced in 2021.
