Families with seriously ill children should be supported with their travel expenses, leading experts have warned as one family revealed they had spent in excess of £12,000 taking their son to appointments.
Provisions are already in place to help families of children with cancer get to and from vital appointments.
But experts from the Great Ormond Street Hospital (Gosh) Charity said that this scheme should be extended so families of children diagnosed with a serious illness can also receive assistance.
The charity said that families should not be “worrying about whether they can afford the train fare or petrol to get their child to specialist care”.
One family from Plymouth described how they had “no choice” but to fork out thousands of pounds to get their son care from the world-renowned hospital in London.
Laurie Grimwade said a travel fund would make “such a difference” after estimating that her family will have spent £15,000 by the time her son Woody is 18.
Woody, now aged 12, was diagnosed with a deficiency of adenosine deaminase 2 (DADA2), a rare autoimmune disease, in 2021.
He had a bone marrow transplant at Gosh in 2022.
Ms Grimwade said: “When Woody was diagnosed there wasn’t a standard drug for treating or preventing his condition and we felt very panicked.
“He was referred to Gosh, had a bone marrow transplant and was under the care of the hospital’s specialist team.
“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, we expect it could reach around £15,000 in total.
“For the first year we had to drive because Woody had a supressed 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.
“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.
“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.”
The wedding photographer and filmmaker added: “We feel safe with the staff at Gosh, they’re so knowledgeable and so patient, and thanks to their care Woody is now doing really well.
“But having a travel fund available to families would make such a difference.
“When your child is seriously ill, there is no choice, you have to get them to the treatment they need, whether you can afford it or not.
“As a family, we weren’t eligible for travel support, so the only financial help we received came from private fundraising by our friends.
“We were incredibly fortunate to have that support, but not every family has that option. A travel fund would give families like ours one less thing to worry about at an already incredibly difficult time.”
The Government’s National Cancer Plan committed £10 million for funding travel for families of children with a cancer diagnosis.
Gosh Charity said that it “firmly supports” the commitment but it called on the Treasury to go further than just cancer and invest an additional £40 million a year to extend the support to other seriously ill children who face a similar burden.
Each year the hospital sees around 81,500 children and young people with some of the most rare and complex conditions.
Around half of the children who attend the hospital travel from outside of London to access care.
One mother described how her family has spent hundreds of pounds traveling from Derbyshire for specialist care in just over a year.
One-year-old Rory Potter was diagnosed with severe sagittal craniosynostosis – a condition where the skull fuses before birth which leads to the skull to be long from front to back but narrow from side to side – shortly after he was born in April 2025.
He became the first in the world to be given a new type of treatment for his rare skull condition from medics at the hospital.
Rory was fitted with new “super elastic” springs to help his skull gradually reshape before being removed.
Rory’s mother Jo Potter, a 36-year-old project manager, said: “The cost of travelling to Gosh has had a massive impact on us.
“I was on maternity leave at the time, so everything is squeezed as it is.
“We came down on the train from Derbyshire, and so far our five visits have come to around £700 in train ticket costs.
“We would always look for the most cost-effective options, such as travelling later in the day and avoiding rush hour.
“To have a travel fund that is there for people who need it, it’s fantastic to even consider it.”
Louise Parkes, Gosh Charity’s chief executive, said: “When your child is seriously ill, getting them to the treatment they need isn’t a choice. No parent should be worrying about whether they can afford the train fare or petrol to get their child to specialist care.
“The Government’s £10 million commitment to help families travelling for cancer treatment is hugely welcome and follows years of tireless campaigning by the cancer community.
“But families of children with other rare, complex and life-threatening conditions can face exactly the same journeys and exactly the same financial pressure.
“We’re asking the Chancellor to build on that commitment and make sure support is available to seriously ill children facing comparable travel burdens whatever their diagnosis.”
Yasmin Sheikh, head of policy and public affairs at the charity Anthony Nolan, added: “The travel fund promised in the National Cancer Plan is a welcome step forward, but it excludes people receiving potentially lifesaving treatments like stem cell transplants, simply because they don’t have cancer.
“Patients who receive cell therapies for other rare conditions such as blood disorders, are just as affected financially by the long distances to access treatment and time out of work.
“We are joining Gosh Charity in calling for the fund to be extended to patients across all disease types, so that no one is prevented from accessing treatment because of the cost of getting there.”
A Department of Health and Social Care spokesperson said: “We know how difficult it is for families when a child is seriously ill, particularly when that means long and costly journeys for specialist care.
“It is important that parents get financial support, and people on low incomes are among those who can already claim back reasonable travel costs for NHS specialist appointments through the Healthcare Travel Costs Scheme.
“And through neighbourhood health centres and community diagnostic centres, we’re shifting more care into people’s local areas, meaning fewer will face long journeys into hospital.”
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