Most of Mark Stewart’s childhood memories are of being on drips and antibiotics – not the happy, carefree memories you’d hope a child would have.
When he was just three years old, Mark – who is now 17 – was diagnosed with Chronic Granulomatous Disease (CGD), a bone marrow disorder.
He received a transplant from an anonymous donor when he was just 11 and it proved an anxious time for the whole family.
Mark’s mum, Debbie Stewart, remembers clearly how she struggled with anxiety following her son’s transplant.
She said: “I went through a massive period of adjustment.
“ I had quite a lot of feelings and emotions and I was worried about everything.
“I think there should be a specialist counsellor for people who have gone through transplant.
“Mark definitely needed to talk to someone but there was a nine-month waiting list for a counsellor and by the time it came round Mark was managing on his own –he didn’t want to revisit it.”
Looking back, Mark said he felt “isolated and left out” – and he and his family are now determined that other children in the same situation receive better care.
They have joined with the blood cancer charity Anthony Nolan to campaign for better long-term care for stem cell transplant recipients.
The charity’s research reveals that one in five stem cell transplant recipients are not offered any specialist NHS support during their long-term recovery.
Mark, now a member of the Scottish Youth Parliament, said: “Having CGD made a big impact on my childhood.
“When I was in nursery and primary school I wasn’t able to go out to play parks, so I missed out and felt isolated.
“Most of my childhood memories are of being on drips and antibiotics. I was given steroids at one point which made me feel better in the short-term, but it stunted my growth, so I have mixed feelings about it.
“The transplant was very mentally testing; I had the transplant and was released from hospital but, about a week later, I contracted a viral infection and had to go back into hospital.
“It was very upsetting to go back and be on a different ward with nurses I didn’t know. I was on constant antivirals and antibiotics because I was allergic to the usual medicine.”
Despite transplant patients often being known as “patients for life” due to the long-term side-effects of treatment, many patients don’t get adequate support for the physical, practical and psychological challenges they experience.
“When you’re going through transplant you’re protected, in a bubble,” Mark said. “When you come out it’s very scary. You’re thrust back into the real world.
“We would have liked some help with getting my confidence back and dealing with the transplant at home.”
Anthony Nolan wants an urgent review of the care arrangements for transplant recipients once they leave hospital and is urging its supporters to raise the issue with their MP.
A survey found that where patients are offered practical support such as help at home or getting back to work, 97 per cent found it beneficial.
However, of those who needed practical support, only 50 per cent of people were offered it.
In Scotland, national commissioners pay for any treatment needed by patients for the first 100 days after transplant.
After that, responsibility for funding services passes to local commissioners.
However, a Freedom of Information request by the charity found just nine per cent of CCGs had specific arrangements in place and more than a third (36 per cent) of CCGs were unaware that the responsibility for patient services after the first 100 days lay with them.
As a result, patients face long delays for services including access to counsellors, physiotherapists and fertility experts, with one in five patients not offered any specialist support at all.
Henny Braund, chief executive of Anthony Nolan, said: “It is unacceptable that many patients have little or no access to specialist support, making adjusting to life post-transplant even more difficult.
“Anthony Nolan is calling on health commissioners to work with the clinical community and make sure that post-transplant care works for every patient.”
To find out more, visit www.anthonynolan.org.