Stem cell transplant recipients are left feeling like they have “fallen off a cliff” as our new research reveals that one in five are not offered any specialist NHS support during their long-term recovery.
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.
Anthony Nolan is 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.
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. Worryingly, more than a third (36%) 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 gynaecologists, with one in five patients not offered any specialist support at all.
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.
Similarly, nearly half (47%) of respondents said that they felt they needed emotional and psychological services such as counselling and group therapy, but of those who said they needed it, only half (54%) actually received it.
This increases the burden on patients and their families, and can negatively affect their mental health, finances, and physical recovery.
Ruth Beaman, who had her transplant in 2016 to treat acute myeloid leukaemia, said, “The biggest downside of my whole transplant experience has been the complete lack of support since leaving hospital. It felt like I was on my own – my GP has offered me nothing. I’m on the waiting list for a counsellor, but it’s very long.
“I’m quite a strong character, but when I go to hospital and sit in the waiting room, I see people who are genuinely not coping. They are too afraid to go out. I’m surprised you’re not referred to a counsellor as soon as you’re diagnosed.”
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.”
We are encouraging our supporters to email their MP to ask for their help in bringing this issue to the attention of health commissioners.