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Taking account of a patient’s background, the circumstances of their lives and the particular challenges they might face is crucial to delivering complex treatments like stem cell transplantation.
In May, the APPG on Stem Cell Transplantation published a report following its inquiry looking at how a patient’s background and circumstances, including a patient’s geographical location, socioeconomic background and ethnicity, can lead to barriers when accessing treatment and care.
Health Inequalities, as defined by NHS England, are “unfair and avoidable differences in health across the population, and between different groups within society”.
Rik Basra discovered the difficulties faced by patients of an Asian background when his Acute Myeloid Leukaemia (AML) returned after a two-year remission. The only hope for Rik was a stem cell transplant but he discovered his would be an uphill battle because it’s less likely for patients of an ethnic minority background to have someone already on the stem cell donor register who is a genetic match to donate their stem cells for this lifesaving treatment. Unfortunately for a variety of reasons, ethnic minority patients have only a 37% chance of finding an unrelated stem cell donor, compared to 72% for white patients.
This is just one of the experiences we heard about as part of this important Inquiry. A patient shouldn’t experience disparity when it comes to the best treatment and care or chance of survival and future quality of life because of their background. The inquiry has explored how ethnicity, as well as other factors such as age, where you live and your socio-economic status can impact different parts of a patient’s treatment and care journey when receiving a stem cell transplant. The focus has been on understanding where the barriers lie, and what can be done to remove these barriers.
We were fortunate that we were able to find a donor for Max, others were not so lucky, particularly those from mixed race and ethnic minority backgrounds
My interest in this area stems from personal experience when some 13 years ago my elder son Max was diagnosed with Leukaemia. This was devastating for my son and my family. The whole world turns upside down as you embark on a programme of treatment and the subsequent decision to go down the transplant path.
We were fortunate that we were able to find a donor for Max. We were acutely aware that others were not so lucky, particularly those from mixed race and ethnic minority backgrounds. We were again fortunate that we had a supportive family network and a job that paid well. For many the financial impact of supporting a family member through this journey is huge and rarely talked about. I have long argued that we need to look at a treatment and support plan that looks at all these factors rather than just the physical treatment itself.
We received rich and insightful responses in our inquiry from over 40 patients, family members, clinicians, charities, and researchers through written and oral evidence. What became clear was that taking account of a patient’s background, the circumstances of their lives and the particular challenges they might face is crucial to delivering complex treatments like stem cell transplantation.
Our report explores recommendations to address these challenges, calling on government and the NHS, amongst others, to make changes such as investing in research and making sure care is culturally appropriate, meaning healthcare professionals have the ability to understand, communicate with and effectively interact with people across cultures. We were joined by Lord Bethell, a Health Minister with responsibility for stem cell transplantation, at the report launch. He commented on timeliness of this report and welcomed the recommendations made, citing a commitment for the Department to work with APPG on the recommendations.
We hope the findings from this report will act as a springboard to encourage more research and a renewed focus on understanding and overcoming barriers to accessing treatment and care for a stem cell transplant.
Our findings and our recommendations will be relevant far beyond stem cell transplantation. It’s vital we use the lessons from the pandemic to make a real step-change in health inequalities. We have a once in a lifetime opportunity to ensure patients get the treatment, care and support they need whatever their background. Find out more about the inquiry here.
Mark Tami is the Labour MP for Alyn and Deeside and chair of the APPG on Stem Cell Transplantation.
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