Scots stem cell recipients 'need better long-term care'

A charity is calling for better long-term health care for stem cell recipients in Scotland.

Anthony Nolan says their research shows that one in five stem cell transplant recipients are not offered any specialist NHS support during their long-term recovery.

They are calling on health commissioners to urgently review the care arrangements they have in place for transplant recipients once they leave hospital, to ensure that patients and their families can continue to access vital support and services.

A survey from Anthony Nolan found that where patients are offered practical support such as help at home or getting back to work, 97% find it beneficial. However, of those who needed practical support, only 50% were offered it.

A family from Cumbernauld is joining them as they campaign for change.

17-year-old Mark Stewart had a stem cell transplant to treat his Chronic Granulomatous Disease (CGD), a bone marrow disorder, at the age of three and had a transplant from an anonymous donor aged 11.

He 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 to hospital.

"It was very upsetting to go back and be put 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 the treatment, many patients are not receiving adequate support for the physical, practical and psychological challenges they experience.

Mark’s mum, Debbie Stewart, struggled with anxiety following Mark’s transplant: “I was very anxious when Mark came back from hospital, 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.

“When you’re going through transplant you’re protected, in a bubble. When you come out it’s very scary. You’re thrust back into the real world. We would have liked some help with getting confidence back dealing with the transplant back home.”

More than 2,000 people a year in the UK need a stem cell transplant to treat their blood cancer or blood disorder.

Currently, national commissioners pay for any treatment needed by patients for the first 100 days after transplant.

After this point, responsibility for funding services passes to local commissioners -- in England, the patients’ local Clinical Commissioning Group (CCG).

However, a Freedom of Information request by Anthony Nolan found that at present, fewer than one in ten (9%) CCGs have specific arrangements in place.

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’s vitally important that health commissioners carry out an urgent review into the long-term care that stem cell transplant recipients need throughout their recovery.

“Many transplant recipients face a long, slow recovery and significant changes to their health and lifestyle. 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 ensure they get the support they need to make a good recovery.”