'We’ve spent more than £12,000 getting our son to hospital': family reveals cost of travelling for specialist care

When your child is seriously ill, getting them the treatment they need isn’t optional. But for families who live far from specialist hospitals, simply getting to appointments can cost thousands of pounds.

For Laurie and her family, travelling between their home in Plymouth and GOSH in London for their son Woody’s treatment has so far cost more than £12,000.

Woody, now 12, was diagnosed in 2021 with a rare autoimmune disease called deficiency of adenosine deaminase 2 (DADA2).

He was referred to GOSH for specialist treatment and had a bone marrow transplant in 2022.

Since then, his family have made regular trips between Plymouth and London, with the cost of petrol and train tickets adding hundreds of pounds to each visit.

“When Woody was diagnosed there wasn't a standard drug for treating or preventing his condition and we felt very panicked,” Laurie says.

“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.”

The financial impact hasn’t been limited to the cost of getting to London.

During Woody’s first year of treatment, his suppressed immune system meant travelling by train wasn’t an option, so the family had to drive.

They have also faced childcare costs for Woody's siblings and have had to take time away from work.

“It’s had an impact on our whole family,” Laurie says. “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.”

Friends helped by organising private fundraising.

“We were incredibly fortunate to have that support, but not every family has that option,” Laurie says.

“A travel fund would give families like ours one less thing to worry about at an already incredibly difficult time.”

Today, Woody is doing well.

“We feel safe with the staff at GOSH,” Laurie says. “They’re so knowledgeable and so patient, and thanks to their care Woody is now doing really well.”

Laurie and Woody’s experience is shared by other families who travel long distances for specialist care.

One-year-old Rory, from Derbyshire, was diagnosed with severe sagittal craniosynostosis shortly after he was born and had a world-first treatment at GOSH.

His family have made five journeys to the hospital, spending around £700 on train tickets so far.

Rory’s mum, Jo, says: “The cost of travelling to GOSH has had a massive impact on us. I was on maternity leave at the time, so everything was already squeezed.

“We’d 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.”

This year the Government’s National Cancer Plan committed to a £10 million travel fund for families of children and young people travelling to and from cancer treatment.

Ahead of the Autumn Budget on 28 October, we’re asking the Treasury to protect the existing commitment to children and young people with cancer and invest an additional £40 million a year so that other seriously ill children facing similar travel burdens can also receive support.

Around half of the children and young people seen at GOSH come from outside London. For some families, specialist care means travelling long distances repeatedly for appointments, procedures and treatment, sometimes over many years.

Those journeys can bring substantial costs for train fares or petrol at the same time as parents may need to take time away from work.

This Autumn Budget is an opportunity to extend that support to other seriously ill children and help ensure that the cost of getting to specialist treatment doesn’t create an additional worry for families at an already incredibly difficult time.

Help us call on the government to fund travel for seriously ill children who need specialist treatment.