Written by Lesley Lloyd, Product Manager of Patient Pathway at Healthcare Communications – October 2021
I found a lump in my breast watching TV on Thursday evening in June 2017. Fortunately, I was able to see my GP first thing the next morning who referred me into my acute trust on a suspected cancer pathway.
Two weeks later I was at a one-stop breast clinic, having a consultation, a mammogram, an ultrasound, and biopsies taken from the two tumours found. It was obvious that something was amiss, and the consultant told me I would receive a phone call once the biopsy results were in to discuss next steps.
22 days after I found the lump, I was told I had triple negative breast cancer and would need at least one surgical procedure if not more, followed by chemotherapy and then radiotherapy. Treatment would take the best part of a year but then I should be good to go! I walked out of the clinic room determined to fight tooth and nail and come out of the experience as strong as I could in order to live my best life. But first I needed to get rid of my ‘little aliens’.
Surgery didn’t take place for another six weeks. Six very long weeks where my stress levels were stratospheric. I was given a surgery date only for it to be cancelled. Given another date, again for it to be cancelled. At the time, communication with the hospital was initiated by me, ringing secretaries and booking teams to try and chase for a date as I was petrified I would be ‘forgotten’ or ‘overlooked’.
Although my rational side knew this wouldn’t happen, my irrational side (which was much more in control then) was telling me otherwise. As much as I understand the huge pressures on the NHS, I would have felt much more reassured that I was on their radar if a process was in place to deliver me regular updates on my waiting list status.
Two surgical procedures followed, so it wasn’t until three months after my GPs appointment that my ‘little aliens’ were removed, and clear margins achieved. The call to tell me that my margins were clear was a heart in mouth moment, as I’d been told I would get a call from my Cancer Nurse Specialist with the news but instead received a call from an administrative assistant asking me to attend the hospital the next day. As you can imagine, my first instinct was that it was bad news, so I rang my CNS to find out what was happening. “It’s all clear” she said, “We’ve got it all, but the doctor wanted to tell you himself.”
Chemotherapy and radiotherapy followed, where you are seeing familiar healthcare professionals week in, week out, day in, day out. They get used to you; you get used to them. They are seeing patients who are going through what you are going through all the time so their advice, information, and anecdotes, which are based on real people’s experiences, becomes really important and helpful to you. But once treatment is finished this contact ends and suddenly it feels like a massive safety net has disappeared, only reappearing once a year for annual surveillance, which has now been affected Covid. It’s no longer a face-to-face appointment with a physical examination, but instead it’s a quick phone call. A tick may have been placed against my name saying contact has been made, but what meaningful information can be shared in such a short length of time?
I am still here because of the treatment I have received from the NHS and for that I am eternally grateful. All the staff I interacted with, whether they be administrative or healthcare professionals, were all trying their best for me, and I appreciate every single person who played a role in my care. However, in healthcare, as in any busy field, it is very easy to get swept along with the task in hand and forget about the person in the middle of it all, which is the issue I am passionate about tackling. Now I know more than ever, patient-centric communications are the future I would like to be part of.
Read Lesley’s blog on volunteering with Macmillan, to hear how she is giving back to the teams who helped her while supporting them with a patient perspective on care.