#myCNSmatters – Your stories

Catch up on the stories many of you shared about your experiences of having, or not having, a CNS.

Who is a CNS, what value do they have, and why is it important that patients have access? These are all the questions we’ve been addressing in our latest campaign, #myCNSmatters.

In 2015 the Independent Cancer Taskforce published a five year strategy for improving cancer care, which NHS England has been implementing. Included within this was the aim to improve the overall experience of patients throughout their journey from diagnosis to living with or beyond cancer.

Through the National Cancer Patient Experience Survey (CPES) it was identified that access to a Clinical Nurse Specialist (CNS) was the most positive influence on patient experience and hence a clear aim was set. All cancer patients should have access to a CNS, or other named keyworker.

At the start of December we published a new report ‘My CNS Matters: the invaluable role of a CNS’ in which we identify the value that a CNS adds to leukaemia patient experience and take a detailed look into the level of CNS access across the UK. CNS numbers have been increasing since 2015, but out of 2019 patients who responded to our 2016 survey only 38% stated they had access to a CNS.

So we launched the #myCNSmatters campaign. We wanted to say thank you to CNSs for all the valuable work that they do, but we also wanted to hear your stories about accessing a CNS to demonstrate why improvements are needed. Here’s what you’ve been sharing:


The persevering CNS

Sam was diagnosed with AML at age 10 and told his CNS, Jenny, ‘to ruin someone else’s life’, but she persevered. Now Sam, and mum, say they would be lost without Jenny and the other nurses to help them out.


The hard to contact CNSs

Ginette has had a hard time contacting her CNS, who unfortunately never seems to be available. She said: “I would love to be able to talk with someone direct and I am really happy that some of you have a good one, treasure them.”


The postcode lottery for chronic leukaemia patients

In response to findings that chronic leukaemia patients have poorer access to a CNS than acute leukaemia patients. One chronic leukaemia patient responded saying that they barely see a nurse and never seemed to see the same person twice at her regular appointments. Chronic myeloid leukaemia (CML) patient Steven Davies, however, has had a very different experience, having a CNS at every appointment.


The CNS who helped her patient to smile again

A patient shared their blog with us about her Macmillan nurse (CNS) Tracy, who was a great support for both her and her family during a difficult journey. She said: “I have so much respect and admiration for Tracy and am so lucky to have her at my side on this cancer journey!”


Those who have never had access to a CNS

Unfortunately, throughout December people have been asking us who Clinical Nurse Specialists are and how they can access a CNS – demonstrating that more work needs to be done to ensure that all leukaemia patients have access to a CNS.

Learn more about Clinical Nurse Specialists, the value they add to patient care, and the issues with access across the UK here: www.leukaemiacare.org.uk/my-CNS-matters

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