Urge NHS England to recognise myelodysplastic syndromes (MDS) as forms of cancer

Can you imagine being diagnosed with a condition and your healthcare team omitting to mention it is a type of cancer? Yet this has been the case for some people diagnosed with MDS. MDS is a type of cancer and it is important that everyone calls MDS a cancer.

By not mentioning the term ‘cancer’ immediately at diagnosis, and not explaining low-risk vs high-risk, there is a risk that patients find out by chance that MDS is a type of cancer, as soon as they look up any information after their initial appointment, such as using the NHS website. The shock of that discovery, when alone, and the lack of medical staff to check with can be traumatic for many. As a result of misunderstanding their diagnosis, patients might not receive the support that they are entitled to, such as employment rights and access to psychological and financial support. This must change.

That’s why Leukaemia Care and MDS UK are working together as part of a Malignant Diagnosis, Surely? campaign. We have launched a petition to insist that NHS England treat MDS as a cancer in everything they do.

Our Malignant Diagnosis, Surely? campaign aims to ask NHS bodies to:

Ensure patients get access to cancer care reviews from their GPs and the support of clinical nurse specialists for blood cancers
Include MDS in NHS cancer data collection (e.g. including them in the Cancer Patient Experience Survey and the Cancer Quality of Life Metrics project).
Issue communications to healthcare professionals regarding the importance of referring to MDS as a blood cancer, and explaining low vs high-risk types at the point of diagnosis.

Do you agree that MDS patients have a right to understand their illness properly? If so, sign our joint petition below.

Your signature will help us to (shine a light on the inconsistencies of an MDS diagnosis for patients.)

Your name and address will be added to the petition.

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