Stem cell transplants offer people with blood cancer and blood disorders a second chance of life when nothing else could. For many patients, a transplant represents the gift of more years in which to get married, go to university, or to see children grow up.
The fantastic efforts of NHS staff ensure that the vast majority of patients have a good experience of being cared for in hospital. We know, too, that some patients benefit from having access to a dedicated NHS or Anthony Nolan nurse.
But recovery from treatment can be a long and difficult journey, and many transplant recipients say they would benefit from ongoing support from specialists such as dieticians, physiotherapists, counsellors and gynaecologists, to help deal with common side-effects such as infertility and early menopause, fatigue, and anxiety. Many patients also experience Graft versus Host disease, where donor cells attack the patient's body. Anthony Nolan's research has found that when patients are offered specialist care to help with these side effects, it can be hugely beneficial.
But too many patients are not being offered the specialist support they urgently need.
A Freedom of Information request by Anthony Nolan shows that fewer than one in ten local commissioners have specific arrangements in place to support patients once they leave hospital. As a result, patients struggle to access specialist services or face lengthy delays.
It's no surprise that one patient described this transition as "like falling off a cliff."
Photo credit: Gary Wallis
Stem cell transplant recipient Joanna 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 don't just bounce back - it's very slow progress and it's probably the worst I felt the whole time since diagnosis.
"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.
"The immediate post-transplant recovery was harder than I expected. Emotionally I've had to dig deeper than I ever anticipated. I wish there had been more psychological support for me and my family -- when I really needed the help, it just wasn't there."
It's unacceptable that patients are left asking who cares about their long term recovery. Support should be available for every patient, in every aspect of their recovery. That's why Anthony Nolan is campaigning for better post-transplant care for stem cell transplant recipients, to make sure they can access the support they need to make their transition from hospital to home - and beyond - more manageable.
We're asking people to email their MP and ask for their support in calling for an urgent review of post-transplant care. With enough people taking action, I believe we can make a real difference to the way transplant patients are cared for.
To email your MP and help make patients' voices heard, visit www.anthonynolan.org/whocares.Suggest a correction