Hi Beth, it’s Kat here,
We never met but your name is talked about so often. Whether it be an amazing thing you did, a funny story, your intellect on dealing with MBC and knowledge on clinical trials and information. Or how you felt let down by the NHS with data when you were a PhD student research in ducks “Macrodemography: A project to collate and analyse wildfowl demographic data” and then questioning why MBC patients aren’t counted but ducks are… and I can hear the grief cutting in Jo’s voice whenever she talks about you.
What a shit-show things were for clinical trial listings when you started working on a METUPUK listing way back when in 2018. They still are to be honest, and a pandemic didn’t help.
I first heard about you three years ago when I was in touch with Jo Taylor who was talking about a woman called Beth who I didn’t know particularly well, but I knew of on social media. You had died which meant that there was a role at METUPUK for keeping a clinical trial list up to date in a database. It feels horrific just writing that. We get a bit desensitised to writing the word died as it is around us daily. I didn’t really understand much about clinical trials at that point in time and felt slightly strange that somebody needs a stage 4 patient to do it for free. You’ll get me, this sounded like a job that actually should’ve been done by somebody else; an official company, the NHS, Department of Health. Somebody surely must be responsible for providing up to date clinical trial information? And so, I started a world of inheriting your work from your final few years of metastatic breast cancer.
There is a term “Dead Man’s Shoes”, which is a strange one and it reflects what all of us with metastatic breast cancer go through. You know that your job, your role as a friend, as an advocate, as a safe space, whatever it may be, is going to be done in some way by someone else one day. It’s a really strange feeling to know that I’m stepping into your shoes Beth, and that one day someone will then step into my shoes when breast cancer gets me as well. I spend my time, just like you did, combing through clinical trial sites in order to pull together a list of all of them that are for MBC. Do we miss some, of course. Particularly those pesky solid tumour ones. Make Seconds Count now have a Patient Trial service to help match patients to trials. I know you would have been so pleased that this idea that you had with METUPUK about a Patient Trial Advocate came to life and that they are managing to fund it. Equally how sad that it’s a charity that is having to support this.
So, what have I done since I took on your bright, intelligent and no-nonsense shoes? Well, I’m a bit of a techy at heart and so my thinking was that if we could make the trial data accessible by map of the UK then we can help patients understand more about trial options near them and further afield. We could help them to start thinking about clinical trials when choosing to go onto another treatment line following progression, because some of the most successful MBC advocates have extended their survival outcome and increasing their time by intertwining trials with each treatment line. Your groundwork and all the thinking behind “how does this need to look, what’s the structure, what data do we need” made this dashboard possible. We’ve been able to present the data in a way that it’s never been seen before, not different data, just presented from a different viewpoint. What we hadn’t appreciated was how interested the clinical community would be in this dashboard, because here laid out clearly for all to see on the map of the UK is just how bad things are in some areas. I don’t think I’ve ever said the word ‘Truro’ or ‘Birmingham’ so many times as the last few months presenting our Trials. You wouldn’t believe that because of an oncologist who loves surfing, who moved in the pandemic to Cornwall, Truro now has more MBC trials than most cities in the UK. And Birmingham, the 3rd largest city in the UK and only one recruiting MBC trial at the moment (but 17 for primary breast cancer).
Hopefully, what we can encourage in patients, is to have partnership conversations with their clinical teams abut trials, travelling further where possible to get the best possible outcomes. Hopefully, what we can encourage in organisations, is that this is many people’s jobs to sort out. Let’s hope my “dead women’s shoes” don’t need to be filled because the data is out there and accurate already.
People still wonder why we are angry. The breast cancer community wonder why we are angry. But you got it. You saw the lack of progress, the lack of urgency for women when it’s the No.1 cause of death for women 35-64 in England and Wales . And now your darling Mum is one of us too.
Love Kat x
Beth Roberts Kat Southwell
