Experts By Experience Panel
Our Experts by Experience (EBEs) Panel are a fantastic addition to our small but mighty team. Our EBE panel is made up of those living with a digestive condition, they ensure those with digestive diseases are always at the heart of what we do and the decisions we make.
It’s important to our team to ensure that the patient voice, your voice, is heard in every decision we make. We’re proud to say that this panel now assists in deciding which research Guts UK funds, alongside UK medical experts.
Meet some of our EBE Panel Members:
"I am an oesophageal cancer survivor, my life-saving oesophagectomy was in 2006 which started my journey into cancer research. There was no patient-to-patient support locally when I was diagnosed so I started up a support group with the help of the hospital medical team in December 2006 which is still running now.
Newly diagnosed patients started asking questions about the research trial they were invited to join, was it the right one for them and are others available? As I had no answers I decided to get involved with cancer research to be able to answer their questions and help every patient make an informed decision on their treatment pathways."
"My name is Margaret Anne Surginor, I am 34 years old and live in Belfast. My road to diagnosis has been a bit of a challenge! I have been diagnosed with Irritable Bowel Syndrome. However, I am still very much undergoing testing to confirm this and have been for a few years.
My interests include reading, volunteering, long walks, spending time with my family and baking - often with varying degrees of success.
I was eager to be part of Guts UK EBE (Expert By Experience) programme. Through my experiences, I have become aware that there is still so much to be discovered about the diagnosis, treatment and management of all digestive conditions. I believe the research is the key to answering these questions and this will help to raise awareness about these conditions."
"I am 57 years old with a partner and two sons aged 27 and 29. I have had pancreatitis since 2018 which is now chronic pancreatitis. I do not do paid work as I am semi retired and suffer from chronic illnesses. I enjoy painting and making jewellery.
I am an EBE because I believe what I am doing is making a difference and hope to continue with this. It's nice to be considered for such an important role."
"I was born with a congenital bowel disease, and spent the first year of my life in Hammersmith and then Great Ormond Street Hospitals. I now live with my wife and two children in Paris, and teach English in French businesses.
I am delighted to be part of the Guts UK team, and have the opportunity to use my experience to contribute to ongoing medical research and the development of new treatments."
"I’m Michael and my pronouns are (he/him). I am a cisgender disabled man whose conditions developed whilst at University in 2014. I completed my courses whilst dealing with complications from my conditions. During this time I was diagnosed as having gastroparesis, in addition to my other conditions. This has resulted in multiple hospital stays.
After spending time focussing on my health, seeing multiple clinicians across the country, I began volunteering for a group at my local NHS trust in relation to inclusion helping to advise on related issues. I also support a number of research projects as a lay advisor/patient contributor. I have an interest in patient involvement and engagement within research from the planning stages through to dissemination. I am particularly interested in how research projects can be made more accessible to the disabled community."
"I was diagnosed as having coeliac disease when I was 18 years old. More recently, after several years of gut symptoms, I was also diagnosed as having severe Bile Acid Malabsorption (BAM). I live in London and work in policy and public affairs in the charity sector. Away from work I love football, dressmaking and seeking out excellent gluten-free cakes!
Having suffered from gut problems for many years, I know what an impact it can have on your life. It took a long time for me to get my diagnosis, and there's still so much we don't understand about our guts, which better research can help us unlock. Having a gut condition can make you feel really alone as it's not the easiest thing to talk about, so making sure the voices of patients are heard throughout research is something I'm really passionate about and why I love being part of the Guts UK EBE team."
If you are interested in getting involved in our patient involvement opportunities, please contact us today.