‘I WISH there had been more support.’

Those are the words of a Hampshire woman urging health bosses to improve long-term care for stem cell transplant recipients once they leave hospital.

Mother-of-two Joanna Calder from Alresford had a stem cell transplant from an anonymous donor in 2016, and she along with blood cancer charity Anthony Nolan wants better long-term support for patients.

At present, the national NHS commissioner pays for everything for the first 100 days after transplant, after which it transfers to the local commissioner - in England, the patients’ local clinical commissioning group.

But a Freedom of Information request by Anthony Nolan has revealed that only 9% of clinical commissioning groups had specific arrangements in place, and more than a third were unaware that this responsibility lay with them. One in five patients were not offered any specialist support, including counselling, physio, dietary advice, and access to fertility experts.

Joanna received a stem cell transplant to cure her acute myeloid leukaemia.

She said: “After my transplant, I was desperate to get out of hospital, but once I was home, I couldn’t really get off the sofa or out of bed. You just don’t bounce back – it’s a very slow progress and it’s probably the worse I felt the whole time since diagnosis.

“I think my lowest emotional time was after the transplant. I questioned why I’d gone through this experience and just couldn’t see an end in those first three to four months. I really wasn’t prepared for the psychological impact of a transplant.

“I was given information about where to look for support when I was in hospital, but I had no energy to engage with it. When I got home and we were all trying to get on with life, that’s when I needed psychological support.

“I wish there had been more psychological support for me and my family – even though staff tried their best, when I really needed the help, it just wasn’t there.”

Anthony Nolan is now calling on health commissioners to 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.

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.”