" On Thursday (3rd Dec), me and mum went off to Manchester to join a lovely bunch of people who have experience of womb cancer in various capacities, some of us as patients, carers, gynae oncologists/surgeons, researchers in womb cancer, GP’s, CNS’s etc; a cross selection of various contacts with womb cancer.
When we arrived I was so excited to meet some of my fellow Peachies whom I have spoken to numerous times but loved to see their beautiful faces; Noreen, Angela, and Marie. It was also lovely to see my fellow peach Carol (who I found out designed the womb cancer alliance logo) and Katherine.
After our lovely introductions we started our session. We were introduced by Richard Morley who explained how the James Lind Alliance worked and how the day would pan out and Dr Emma Crosbie explained about all the work the WCA had done so far to lead us up to this point. I was pleased that the statistics showed that it was an even split between patients and healthcare professionals input to the questionnaires.
We were then asked to go in to smaller groups in which we were asked to share more of our story and which angle we were coming at. We then went through our homework list to say our top 3 and bottom 3. We also had to say the reasons behind these. We also found that we all found the task quite challenging as all of the questions were important so how could we rattle it down? Another interesting observation was what we as patients found important that the medics did not and vice versa, mainly because medics knew information that we as patients didn’t understand and from the feedback the medics didn’t understand the feelings that we may necessarily have felt as a patient.
We spent the remainder of the morning working together trying to create a list in which we as a collective where happy with, trying to represent various themes form the questions and trying to incorporate all of our feelings.
After lunch, it became a bit more challenging. We were mixed up into different groups and during the lunch hour the James Lind facilitators had produced a list from all of the 3 groups of the order we came up with. We then in our new groups had to look at this and say if we agreed with the new order and again state our case for why and what we had to take off. I did find this particularly challenging as within this group there was only two patients among medics/researchers and I did feel certain researchers were trying to push their current research to the top and although there was two patients we both had very different views. Proves you can’t bracket all womb cancer patients as one, and I also noticed in this session that you can’t bracket all Medicals as the same as there was strong debate and feelings among this group too. I found that I had to really think and articulate my arguments into this session, but not much changed as most of us generally agreed on the top items.
After a coffee break, the afternoon got more challenging as we then had to agree as a full group combined to make our full agreement of the top ten list. I have to say this was generally good as we mostly agreed but again, it was here that strong minds often clashed and the democracy of a vote had to take place. I didn’t realise how passionate I was about womb cancer and in particular about young women being diagnosed until one research question was nearly taken out the top ten and suddenly a passion stirred in me and I had to express the views of why I felt this had to stay in and was amazed about how many actually supported it; so it goes to show that you should never be afraid to express your views but we must always respect those around us.
So after a long day, we eventually produced the top ten list; this does not mean that the others are discarded, they will be produced as another list for others to research. This was just what we felt collectively really needed researching and looking into and to be fair at the end, as a collective, we looked at the top themes that needed to be in top ten and which questions we felt best represented this.
If you wish to find out more about Womb Cancer Alliance and to see the list once its published please check www.cancer.manchester.ac.uk/wombcanceralliance
This is an abridged version of Clare's original post; if you would like to read the full post then go here
We thank Clare for allowing us to share her blog post about this important day for womb cancer research.
xx Kaz xx