I was diagnosed with CLL in 2006 and in those days no information about the disease was given to patients, leaving them bewildered having been diagnosed with cancer and nothing happening.
Over the last 5 years, I have been seriously ill, and Helen has been outstanding in her dedication, care, and follow-up support as well as demonstrating deep knowledge and understanding of my illness, helping to clear my worries and concerns.
In the last 2 years, I have had the need to contact Helen on at least three occasions. If she wasn't there to answer her phone, she has rung back within minutes. After talking through my problems and assessing the urgency of the situation, Helen has decided on how to proceed. After giving me reassurance, knowledge, and guidance, she got me access to a consultant at the latest within 18 hours and most recently immediate access to the Day Case Unit for treatment.
What makes Helen so special is she has fully engaged in what I believe is a new role where patients who are newly diagnosed have an interview with her. She reassures the patients and put their minds at ease as best she can and begins the process of education into what CLL is.
Last year I began treatment with a new drug called Ibrutinib. I had to fight to be allowed to be given this drug as NHS England for some reason had unscientifically gone against NICE guidance for the drug's use. After setting up an online petition getting thousands in support the decision was reversed and I began treatment.
During this time, Helen spent a lot of time with me, as I was so ill. reassuring me and talking about other options of treatment, which again gave me some peace of mind. I believe this interpersonal interaction was above and beyond what is due through her role.
In the clinic you can see how highly thought of Helen is as she often stops and talks to those under her care but have not come to see her that day. In overhearing some conversations, you can glean the reassurances she gives to the patients who then happily chat with their carers as Helen moves on.
Helen also liaises with organizations such as CLLSA, Leukemia Care, Bloodwise, etc. Some if not all are voluntary. I was recently at a newly formed CLL Support group at Nottingham City Hospital where she gave a presentation clarifying markers used in CLL progression. Whilst I'm an old hat and understand these things, there were newly diagnosed patients who asked a host of questions. Helen answered everything and everyone verbally said they felt so much better for having Helen's 'layman's' term explanations. Helen also spent time after the meeting chatting with patients answering further questions. I am quite poorly at the present time and Helen continues to be my first port of call and I have total confidence that whatever can or needs to be done will be and expeditiously.