I’m very nervous about this. I’ve had sleepless nights of late thinking about this. I need to do it though. I’m perfectly placed as I’ve been a Patient Reviewer on the Information Prescription (AKA Information Pathways) and also as a patient who sought information.
I’ve been asked to speak at a training event for nurses and staff that will be using the system first hand. It’s part of a phased rollout project and there’s been lots of negative comment about the system from users that feel it’s yet another thing that they’re being asked to do when they’re already short of time. Sadly one aspect of the rollout that I believe was missing was to supply IT equipment and printers to users – a small cost in the big scheme of things and one that is so essential! In many locations the nurses are writing down the names of forms and papers and then asking patients to print them in the Cancer Information Centres or at home. I can’t imagine, as a patient, doing this or feeling looked after doing it myself!
I joined the delegates at lunchtime and heard the presentation from David Manning of NCAT talk about the content and where it’s at. (Sadly as a patient reviewer, I know that we’ve not reviewed any documents for quite some time!).
Then there was a short presentation from nurses using the system. Telling us some of the quick wins they’d discovered whilst using the system, feedback from patients about the information and also highlighting a few of the hurdles they have had to overcome.
My turn next. I was so terribly nervous. I firstly introduced myself as a patient, user, survivor, patient advocate and many other titles! An introduction to a brief summary of my cancer journey. Finding the lump, Mum’s funeral, the interaction with primary care, introduction and immersion into cancerland and.. well you know the rest of the story from here. I ended with a short piece about the Information Prescription system. Why I thought it was invaluable. Although it is something else that the nurses have to do (and I appreciate how much they already have do) it is about patient care.
In my view it is important to look after a patient holistically. If a patient’s needs are met and reviewed regularly, have a system that they can refer to and find reliable information, then wouldn’t their lives actually be made easier as the patient would become more self-managing!
At the end of the day I was so pleased that so many people came up to me to thank me for telling my story. They told me of parts that they’d not really thought about before. I hope it’s made a difference.
(***UPDATE*** at the following Cancer Network meeting the Nurse Director pulled me to one side and told me that my talk had been the most influential. She said since that date, she’d heard nurses discussing it and discussing how they can improve things. WOW – the impact of a patient story.)