Recovery after
transplant: Who cares?

Patients don’t always have access to the care and support they need after a stem cell transplant. Ask your MP to back our call for an urgent review.

  

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Who cares?

A stem cell transplant is just the beginning of a patient’s long journey towards recovery. After they leave hospital, they can face a huge range of physical, emotional and practical challenges, but many patients are left asking: ‘Who cares?’

Why do we care?

  • Patients are often left unprepared for the challenges they face after their transplant
  • Many patients and their families are not offered the emotional or practical support they need throughout their long-term recovery
  • Patients regularly have to deal with a lack of coordination between different parts of the health service

No patient’s recovery should be made more difficult by a lack of care and support. You can help by asking your MP to back our call for an urgent review.

47% of patients said they needed emotional and psychological support

JOANNA’S STORY

Joanna received a transplant in 2016 to treat acute myeloid leukaemia (AML)

‘After my transplant, I was desperate to get out of hospital, but once I was home, I couldn’t get off the sofa or out of bed. It’s probably the worst I felt the whole time since diagnosis.

‘I questioned why I’d gone through this experience and just couldn’t see an end in those first few 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. It’s when I got home that I really needed psychological support.

‘My family were greatly affected too. My daughter was 13 when I was first diagnosed, and the caring role of mother to child had to be reversed, and that’s quite hard to accept.

‘Emotionally I’ve had to dig deeper than I ever anticipated. I wish there had been more psychological support for me and my family – even though staff tried their best, when I needed help, it just wasn’t there.’

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36% of patients didn’t receive information about support or self-help groups that they wanted

RUTH’S STORY

Ruth received a transplant in 2016 to treat acute myeloid leukaemia (AML)

‘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.

‘When you’re out of hospital, people seem to forget you’re ill or at risk of infection or relapse. Once you’re home, people think you’re fine. I’ve found it lonelier being at home than in hospital.’

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46% of patients said they needed practical support during their recovery

CHRIS’ STORY

Chris received a transplant in 2007 to treat mantle cell lymphoma

‘I had my stem cell transplant nearly 10 years ago, and since then, I’ve suffered with various complications. There were times when I felt I might be over the worst, but then something else would happen.

‘In 2011, I started to think about returning to work. But then I got another infection and was seriously ill with graft versus host disease (GvHD), which required further treatment.

‘All this meant I couldn’t go back to my old job. I used to travel extensively and loved working hard and the rewards that came with that. With all these complications, I felt like a prisoner to the disease.

‘Though I was glad to be alive, it’s not the only thing that’s important. It truly shocked me how poor the support after treatment can be, and nothing could’ve prepared me for what I faced.

‘Years later, I’m now doing well and I’ve started a new career raising awareness of cancer in the community. But it’s been incredibly challenging getting back to my life after treatment.

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What we are calling for

No patient’s recovery should be made harder by a lack of care and support, but hospitals can only provide this if they have the resources to do so.

Anthony Nolan’s new report, Recovery After Transplant: Who Cares?, shows that the way in which services are paid for, or ‘commissioned’, is not working for every patient. Hospitals only receive appropriate funding for the first 100 days of a patient’s recovery – beyond that, it’s not clear who has responsibility.

That’s why we’re calling on health commissioners in the UK to:

  • Conduct an urgent review of the care and support that patients receive after a stem cell transplant, including the impact of the 100 day cut-off.
  • Work with Anthony Nolan and the clinical community to develop a plan to ensure that every patient has access to the services they need.

Without action now, many patients and their families will continue to be denied access to the services they need, making their recovery all the more difficult.

We need to make sure patients’ voices are heard – please ask your MP to back our call for an urgent review.

Image of smiling patient wearing glasses with the back of another man wearing glasses in the foreground reading from a leaflet

From the moment a patient is told that they need a stem cell transplant, to recovery and beyond, Anthony Nolan provides information and support for patients and their families.

The Patient Services team also coordinates a network of dedicated specialist post-transplant nurses. By April 2018, Anthony Nolan will have funded nine clinical nurse specialist posts in transplant centres across the UK.

We can help you find answers to your questions, or just provide a listening ear if you need one. To find out more about the support we offer please visit our website.

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