Guest blog by Katie Begg, Head of Policy and Public Affairs at leading blood cancer charity Anthony Nolan
As cancer survival rates improve, and more and more people are living with and beyond cancer, the attention of policy-makers has turned to survivorship and the long-term consequences of cancer treatment.
For a patient suffering from a blood cancer or other haematological disorder, a bone marrow transplant could be their only chance of survival. Only 50% of the patients that need a transplant will get one. Many of these will die as a consequence of the transplant and the majority of those who survive will live with the debilitating consequences of this treatment for the rest of their lives.
The ‘late effects’ that a patient may experience following a transplant vary in type and severity, and can affect patients physically, emotionally and psychologically.
In some cases patients can display mild symptoms, and in others, suffer from long-term chronic conditions. Over 60% of patients, for example, will suffer from Graft-versus-Host-Disease (GvHD) that can cause painful damage, most commonly to the mouth, gut, liver and skin.
Many transplant centres offer some form of treatment and support to patients who are struggling with the effects of a transplant, sometimes years after they were first treated. But this provision differs from centre to centre, and there is no real guidance on the configuration of the ideal late effects service or how this should be funded. Without this consistency, some patients are missing out on treatment that they could access if they lived in a different part of the country.
Anthony Nolan advocates on behalf of all bone marrow transplant patients and we are campaigning to end this disparity of care. We are calling on NHS England to ensure that all transplant recipients have access to the treatment and care that they need. This should be underpinned by a sustainable and comprehensive framework for funding a full late effects service that is available to all post-transplant patients, as and when they need them.
In collaboration with 2020health, we have published a report ‘A roadmap for recovery: ensuring every patient finds the care they need after bone marrow transplant’ which highlights the variation found in the provision of these services. The report launches Anthony Nolan’s survivorship campaign and aims to stimulate further discussion to improve transplant care and survivorship within the changing NHS landscape.
We have suggested key recommendations for reforming the current commissioning system so that it better meets the need of patients.
It has been said that ‘a transplant patient is a patient for life.’ The current variations in the care available for patients suffering psychological and physical effects post-transplant can have a devastating impact on their lives, and the lives of their families. We believe every single one has the right to specialist care which will enable them to rebuild their lives.