Research by the charity and independent research think tank 2020health reveals significant variation across England in the availability of comprehensive post-transplant care for those suffering long-term effects.
Every year, around 800 people in the UK undergo a potentially lifesaving bone marrow or stem cell transplant. For people with blood cancer and other blood disorders, this is often their only chance of survival.
Many face a raft of post-transplant complications, called ‘late effects’, which demand specialist care. For example, 50% of post-transplant patients develop graft-versus-host disease (GvHD) – a potentially fatal post-transplant condition which can have a severe impact on a patient’s quality of life. Based on a research study conducted by Opinion Health, of those affected by GvHD, only 42% have access to a late-effects clinic to help manage their condition long-term.
The report highlights several key issues with NHS England’s current system, ranging from a lack of clarity and guidance on a good late effects service, to unclear commissioning pathways, a need for better data collection and more recruitment to clinical trials. Patient empowerment and workforce structures were also singled out as in need of change.
Anthony Nolan is calling for NHS England to recognise the complex care needs of these patients and implement long-term strategies to improve their quality of life. Among its recommendations:
•NHS England should adopt a national set of guidelines outlining what care should be provided, and how
•NHS England should create a seamless, national care pathway for patients recovering from a bone marrow transplant
•The NHS should recognise that a return to an active life is a key health outcome
•The NHS should recognise when someone goes through a transplant, their family does too
•Patients should feel empowered and in control of what is happening to them, and what options are available.
Henny Braund, Anthony Nolan’s Chief Executive, says: ‘When the Government decided to reform the way in which the NHS commissions care for specialised and rare conditions, it outlined a single, under-pinning principle - to secure access to treatment for every person who needs it. Right now, many post-transplant patients aren’t receiving the care they need, simply because of where they live.
‘The current variation in the care available for patients suffering psychological and physical effects post-transplant can have a devastating impact on their lives, and on the lives of their families. We believe every single one has the right to specialist care which will enable them to begin to rebuild their lives.
‘Your care should be determined by your condition, not by where you live and the hospital at which you are treated.’
Dr Bronwen Shaw, consultant haematologist at the Royal Marsden Hospital and Chief Medical Officer at Anthony Nolan, says: ‘A transplant patient is a patient for life. Their needs are best met by specialists well-versed in the treatment of complex late effects. As clinicians, we look to the NHS to set the standard to ensure equity of access to care for every single patient in need. National guidelines to aid the ongoing assessment and treatment of patients post-transplant would go some way towards ensuring they feel empowered and in control of the next steps in their journey to recovery.’
The report, ‘A roadmap for recovery’, launches the charity’s survivorship campaign. It aims to stimulate further discussion to improve post-transplant care and survivorship within the changing NHS landscape.