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Kes Grant

written by

Leukaemia Care, Charity

  • Kes Grant

I hope my story resonates with some and shows the value of the NHS and the specialist nurses that work within it.

In 1994, when I was in my late 20s, I had my first bout of large red cells (macrocytosis) and unexplained anaemia. By 1998, I had a probable diagnosis of MDS (myelodysplastic syndromes). I wasn’t given a definitive diagnosis till 2000. This was unusual, as I was only 35 and most people who are diagnosed with MDS are retired and more likely to be male. As I was previously a young, fit woman, it’s no wonder it took so long to diagnose it. Also, sometimes the early symptoms are vague.

Once I was formally diagnosed by a centre of excellence, I was given a Clinical Nurse Specialist (CNS). She was available to answer any queries I had and explain any issues or procedures that required a bit more time.

Geke was an amazing support for the next 17 years. I could email her or ring if I wasn’t sure what to do about a new symptom or issue, and she would advise whether I needed to come in or not. In that respect, she stopped me sitting in A&E for hours or needing to be seen in outpatients or supportive therapy sooner than my usual clinic appointment. This must’ve saved the NHS some money over the years, as well as saving me some anxiety by straightforwardly dealing with my queries.

When I was told I needed a stem cell transplant, I was moved to the transplant team and then met other CNS’. Christina and Michelle helped to explain the scary transplant process. They co-ordinated a series of very complex appointments and procedures before the transplant. They also run a monthly support group to help support patients in the post-transplant phase. Again, I can phone or email between appointments for advice and support and, if I have not been so well, they phone me between appointments to make sure I’m doing okay.

All the CNS staff I have encountered have been friendly, professional, dedicated and extremely knowledgeable. They have made my life easier and are a wonderful safety net during what can be a scary time. I wish all hospitals had them because they save time and money by placating fears and dealing with queries that can wait till regular appointments. They can prescribe some medication, complete some procedures and co-ordinate complex arrangements.

I am so grateful to my CNS’ and, if I could, I’d make sure everyone had access to one because before I had one I felt lost. I had no one to bounce situations off. The internet was unreliable at that stage, but was all I could turn to between appointments. They really are worth their weight in gold.


This December, we are spreading a little Christmas thanks for the invaluable role that Clinical Nurse Specialists (CNS) have in a leukaemia patient's journey. We want CNSs to know that they matter to patients, to charities and to other healthcare professionals.

Find out more about our #myCNSmatters campaign here.