Experts By Experience Panel

"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."

"My name is David Hawkins. I’m 63 years old and in December 2019 my husband Steve was diagnosed with severe acute pancreatitis. After 3 months in hospital (mostly ICU) he tragically died on 15th March 2020.

Steve’s illness was a complete surprise to us - we had never heard of pancreatitis, and it was truly shocking to find out there is no effective treatment. We were given no support information about the disease in hospital but, luckily, I found the Guts UK website. Throughout Steve’s illness the charity were fantastic, and having that support network meant the world to us both.

After Steve died I strongly felt I wanted to do everything I could to help the charity and, in a very small way, support the research looking for a cure for this terrible disease. I was lucky enough to take part in the Pancreatitis Priority Setting Partnership and, more recently, take on the role of EBE to offer my help and assistance as best I can."

"I’m Dani, I’m 24 and I have gastroparesis. I was diagnosed in 2018 by the gastric emptying study (and now I refuse to go anywhere near scrambled eggs - if you know you know!!).

I love tv shows, films, the cinema, drinking tea in cafés, colouring, crafts, Christmas, and Disney. My hobbies nowadays are much more introverted than before I got ill and that took a lot of time to come to terms with, and so I have a lot of spare time on my hands at home.

I wanted to be an EBE because I want do something meaningful - and what is more meaningful than volunteering for a charity that helps promote patient advocation? Patient advocation and standing up against medical gaslighting is something I am so passionate about as I have experienced a lot of medical gaslighting since first getting ill. I cannot wait to see where being an EBE takes me!" 

"I live in Gainsborough, Lincolnshire, with my husband, Graham, a professional photographer (who took this photo).

 For many years, I worked as a Deputy Stage Manager, for one of the UK’s leading ballet companies-later retraining as a veterinary nurse, working not only for the RSPCA, but also in canine artificial insemination. I was diagnosed with Sphincter of Oddi Dysfunction in 2007, 2 years after having my gall bladder removed as an emergency.

I was extremely flattered to be asked by Guts UK , to be an EBE for the charity. Listening to the sufferers of a chronic condition, can give a real and practical insight into the illness they are sharing their lives with. Being an EBE, for a charity with a really caring ethos, has given me a focus, as sadly, my illness has meant I am not able to work full time.

It saddens me that this difficult condition, has robbed me not only of my ability to work, but also my spontaneous nature and my sparkle. The involvement with the charity, has given me a purpose, and I really hope to make a difference to those with a digestive issue."