Tell us about where you live, your academic background and how you became involved in medical research
I live in Liverpool after moving here from London seven years ago. I moved to Liverpool after I left a 16 year career in the Civil Service, I think it was my mid-life crisis! Since I moved to Liverpool I have been working as the marketing manager for a company that supplies stoma bags and have only recently resigned from my job as I embark on my PhD. As someone living permanently with a stoma, I like to think I related well to the needs of our customers.
Thinking about it, my academic background isn’t typical. Most PhD students conducting medical based research will have studied a science for their first or second degrees, but I read Modern History as an undergraduate.
I went to Uni at 18 as most people do. I started a Teacher Training degree but realised that wasn’t for me, so I left and then went back to University some years later as a mature student. I graduated from the University of Westminster in London in 2002, and then took a career break from the Civil Service to do a Masters in Peace and Conflict Studies at the University of Ulster, where I studied until 2004.
From 2007 to 2016, I was a trustee of the Ileostomy and Internal Pouch Association and in 2015, I was asked to fill in for a colleague to attend a meeting organised by the Association of Coloproctology of Great Britain and Ireland (ACPGBI). The meeting was part of their Delphi process to bring together clinicians, researchers and patients to agree and prioritise future research areas.
It was at this event that I began to understand the role that patients can have in designing and running studies. For me, it was a revelation and it enabled me to meet Nicola Fearnhead.
Through Nicola and the ACPGBI Delphi process I became involved with the ENiGMA Collaborative which was researching fistulating perianal Crohn’s disease (small tunnels that develop between the end of the bowel and the skin near the anus). From this I was asked to be involved in more studies and things rather snowballed.
Please tell me about your role as the Principal Investigator on the PAPooSE study
While at the European Society of Coloproctology annual meeting in Nice, France in September 2018, Nicola Fearnhead suggested that the time was now right for the first patient led study, and we discussed the benefits of a study looking at stoma patients’ experience during pregnancy, which became the PAPooSE study.
As a patient, I was encouraged by Nicola and others to put together a proposal and to apply for a grant from Bowel Research UK for this study.
Applying for grants is never a ‘done deal’ because they are very carefully assessed and scrutinised, and most applications are turned down rather than awarded, which means I was very lucky to be given one. I believe I was the first UK patient to receive such a grant in the bowel disease research field.
The PAPooSE study involved an audit of data across 15 UK hospitals, and it produced the largest ever data set on pregnancy following stoma surgery which was later published in Colorectal Disease in early 2022.
I had the honour of presenting the research at the European Society of Coloproctology conference held in Dublin last year, and again at the Association of Stoma Nurses conference in Harrogate. I was delighted that our paper received very positive feedback at both conferences.
Please tell us about your PhD research project
My PhD project is looking at parastomal hernia treatment and shared decision making. To date, all of the research on parastomal hernias has been clinically focused, no one has looked at the patient and clinician views and experiences related to parastomal hernia treatment. For those who don’t know, a parastomal hernia is a weakness in the abdominal wall which means that patients develop a bulge next to or behind their stoma.
In the UK, we estimate that around 20,000 people a year have stoma surgery, and we think that about half of all patients who’ve had a stoma will develop a parastomal hernia.
Parastomal hernias can cause a lot of problems for patients. These include problems with getting a stoma bag to fit properly, causing leaks and sore skin, pain and discomfort, and in some cases more serious problems such as bowel obstruction.
My PhD intends to look at patient and clinician views and experience around parastomal hernia treatment, why patients seek treatment (whether that is an operation or less invasive options like a hernia support belt), and also explore the impact that shared decision making can have. One of the issues for patients considering treatment for a parastomal hernia is that currently the information available has not been written in conjunction with patients, and often doesn’t cover everything patients want to know.
My aim is to produce some very useful information materials, enabling patients to understand fully their options and make the best decisions when it comes to parastomal hernia treatment. I also want to produce information aimed at surgeons to allow them to hold much better conversations with their patients, again improving outcomes. I have every confidence this will be a very practical research project with real world benefits.