Families travelling to London’s Great Ormond Street Hospital for specialist treatment are facing thousands of pounds in travel costs, prompting calls for more financial support from the Government.
One family from Plymouth has already spent more than £12,000 getting their son to appointments at the world-renowned children’s hospital, with the total expected to reach £15,000 by the time he turns 18.
A family’s story
Laurie Grimwade, whose 12-year-old son Woody was diagnosed in 2021 with DADA2, a rare autoimmune condition, said her family expects to spend around £15,000 on travel by the time Woody transitions to adult care.
“We’ve spent £12,350 travelling to and from the hospital so far, and Woody will remain under GOSH until he is 18, so that number is only going to go up,” she said.
“For the first year we had to drive because Woody had a suppressed immune system, so the train simply wasn’t an option. Whether by train or car, ticket and petrol costs quickly add up to hundreds of pounds each time.”
The financial burden extends beyond travel. “It’s had an impact on our whole family; we have two other children and being away from them for the bone marrow transplant was traumatic for my youngest especially,” she said. “We’ve needed to find extra childcare and take time off work to travel for Woody’s treatment so not only were we paying for travel, but we were sometimes also not earning a day’s pay.”
Woody underwent a bone marrow transplant at GOSH in 2022 and will remain under the hospital’s care until he is 18.
Not eligible for support
The Grimwade family was not eligible for existing travel support schemes and only managed thanks to private fundraising by friends.
“We were incredibly fortunate to have that support, but not every family has that option,” Ms Grimwade said. “A travel fund would give families like ours one less thing to worry about at an already incredibly difficult time.”
Calls for government action
The GOSH Charity is urging the Government to extend financial support to all families of seriously ill children, not just those with cancer, to ease the burden of travel expenses.
Currently, the Government’s National Cancer Plan includes a £10 million fund to assist families of children with cancer with travel costs. The charity is calling on the Treasury to invest an additional £40 million annually to support all families of seriously ill children with travel expenses.
The charity argues that the current system creates an unfair two-tier structure, where families of children with cancer receive support but those dealing with other serious conditions — from rare genetic disorders to complex heart conditions — are left to cope alone.
The hidden cost of care
Great Ormond Street is one of the world’s leading children’s hospitals, treating young patients with the rarest and most complex conditions from across the UK. For families living outside London, accessing that expertise comes at a steep price.
The hospital’s catchment area spans the entire country. Children with conditions so rare that only a handful of specialists in Britain can treat them may need to travel hundreds of miles for appointments that last just an hour. For families in Cornwall, Cumbria or the Scottish Highlands, each visit means a full day — or several days — of travel, with all the associated costs.
Travel costs are just one part of the financial strain. Families face accommodation costs for overnight stays, food, childcare for siblings left at home, and lost income from time off work. For those on lower incomes, these cumulative costs can become insurmountable — potentially affecting whether a child can access the specialist care they need.
Charities and patient groups have long argued that the NHS’s promise of free healthcare rings hollow when the practical costs of accessing it push families into debt. The GOSH Charity’s call for a £40 million annual travel fund would, it says, remove one of the most stressful barriers facing families at the worst moment of their lives.
London Streets has covered other stories affecting London families and developing news across the capital.
