Malignant Diagnosis Surely?

MDS World Awareness Day October 25th 2022 - Malignant Diagnosis Surely?

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 it 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, as soon as they look up any information after their initial appointment, like reading 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.

Leukaemia Care and MDS UK are working together as part of a Malignant Diagnosis, Surely? campaign.

 

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.

Malignant Diagnosis Surely?

Support the campaign further

Send us your stories of diagnosis. What was your experience?

  • Were you told at diagnosis that MDS is a form of blood cancer?
  • If not, how did find out?
  • What was it like finding out in that way?
  • Were you told at diagnosis that there is a low risk and high risk of MDS?
  • Send us your stories to info@mdspatientsupport.org.uk and we'll put them up on our Stories of Diagnosis page
  • Share your MDS story using the hashtags #MDSWAD2022 to show your support for the campaign.

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