Octobernote 2022

After returning to weeknotes at the end of June a lot has happened which means that I am only just getting back to publishing my notes again. There’s a merger being planned, there’s a restructure happening and in the midst of it I was waiting to find out what the small blob they saw on my thyroid was from when I had a PET scan earlier in the year. It wasn’t possible to tell what it was via ultrasound or biopsy so in September I had an operation to remove half of my thyroid and I didn’t return to work until earlier this month, hence the slight radio silence from me recently.

Unfortunately, and completely unrelated, the results showed that I had cancer for the second time this year. Amazingly though, again I only needed the cancer area removing and no further treatment as it wasn’t an aggressive form. What boggles my mind is that if I hadn’t had a preventative mastectomy and reconstruction to reduce my risk of breast cancer, whilst I wouldn’t have had implant cancer, I wouldn’t have had a PET scan. If I hadn’t had that PET scan, I would still know nothing about the cancer in my thyroid. The cancer diagnosis I had earlier in the year may well have saved my life and I’m feeling incredibly lucky right now.

Riding on this wave of positive news (I think we can all do with some positivity right now!) here are some good things that happened this month in my world:

• We finally got the keys to our purpose-built user research lab in our Leeds hub. Lots of hard work has been done by many people to make this happen and whilst we need to pilot the logistical use of it, it is so good to see it finally finished
• Becoming one team with our UCD colleagues in the joint unit and getting to work even more closely with Pete, Kathryn and Sara
• A long-awaited face to face meet up with all the NHS Digital Lead User Researchers. We have grown this leadership so much over lockdown that we had never actually met in person as a group. Spending time face to face with this fab group of colleagues was really motivational and got my brain sparking.
• A masterclass that Tero and I delivered to Topol fellows about user centred design and how we have practically applied it within health.
• Joining Manchester University’s Digital Health Reading Research group to talk about how ‘Usability is a Clinical Safety Issue’
• Joint work with colleagues across NHSE, NHSD and HEE to deliver things that we need in our new organisation — from UCD ops to assurance
• The rejuvenated uptake of teams taking part in UCD maturity reviews and the feedback we have had about their impact.
• A trip to London for voluntary work in my patient advocate role, participating in the CanGene Can-Var patient event on decision making https://www.cangene-canvaruk.org/post/patient-decision-making-workshop . It was another first face to face meet up with my fellow advocates and a really inspiring day. It also gave me two whole Leeds to London train journeys to read a book in peace!
• Whilst reorganisations and mergers are not always the most pleasant of things and we are dealing with a lot of challenges right now, what we have in our hands is a rare opportunity to work in ways we have been advocating for a long time and remove barriers to delivering value in the NHS.
• The care and support I have had from colleagues whilst I was recovering from my operation and when I returned to work. Again, everyone rallied round to keep everything going whilst I was off and welcomed me and my new scar back to work.

Some of things that I will be working on over the next month:

• My main focus —continuting to input to the various re-organisation workstreams to ensure our new organisation is set up in the best way to deliver care to patients and support the front line
• Moving forward our inclusive design work including some cross organisation work on digital inclusion
• Cross organisational work on health professional facing products
• Working with the user research leadership team on our key priorities
• Continuing to ensure we are mindful of the impact everything is having on people right now. Everyone will experience the organisational changes going on differently and everyone has different personal circumstances that are impacted by the world in which we are living in at the moment.