Sue Blackwell, ACPGBI Patient Liaison Group

24 March 2023 (Last updated 24 Mar 2023)

When Nicola Fearnhead first said that the time was now right for the first patient led grant application, I really had no idea of what was ahead. I also never expected the grant application to be successful, so when Peter Rowbottom rang me to say it had been funded people at work asked what was wrong as they’d never seen me look so happy!

Once the initial shock wore off all of a sudden, I was thinking, right, so I have this grant, what on earth do I do now?  Luckily, I had people whose brains I could pick on how to write a protocol, and how to register a systematic review. I was, as far as we know, the first patient to get a research grant for a colorectal study, and while that was brilliant that BRUK (BDRF) took that leap of faith, it has meant that it was harder to do some things. As I wasn’t associated with an institution I’ve had to rely on other people’s help for things like ethics. I think that in future having a patient and clinician as Co- Chief Investigators is the way to go as it gets round all of those issues.

Christian Selinger and Matt Brookes were the two gastroenterologists that were part of the study team, and they really were key to the success of the audit. When we started, we looked at the limited papers available and the most patients included in any of them was eight, so we really didn’t know what sort of data we’d be able to collect. We certainly didn’t expect to get the largest ever data set on pregnancy following stoma surgery. 81 pregnancies in 77 patients. Thanks have to go to the clinicians that gave up their time to provide their hospitals data, especially as we did this during the pandemic.

We’ve have also been very lucky that we’ve had opportunities to present the results of the audit at a number of conferences, getting the word out to gastroenterologists, surgeons and stoma care nurses. And not just in the UK, next month I am going to Australia to present the results at the joint Australian and Asia Pacific Stoma Nurses conference.

It’s fantastic that so many clinicians are getting to hear about our results as this can only help to improve patient decision making. For anyone interested in reading the paper it is available online at:

https://onlinelibrary.wiley.com/doi/10.1111/codi.16098

I’ve been so lucky to be able to work with so many fantastic people on PAPooSE, but a special thanks has to go to Matt Lee who has been endlessly patient with all of my research questions, and never fails to inspire me to learn more and help improve patient outcomes further.

Sue Blackwell, ACPGBI Patient Liaison Group

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