Our 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."

"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 different hospitals. I now live with my wife and two children in Paris, and teach English in French businesses. I also lead bike tours around Versailles in Summer.

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."

"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 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."

“Around 12 years ago, I was diagnosed with Barrett’s oesophagus. I live in Berkshire and work as an editor and writer in the English language teaching industry. I’ve taught English in different places around the world, including Japan, which was my favourite, and returned to the UK in 2008.

Guts UK is where I found the clearest, most reassuring information about my condition. I’m proud to be on Guts UK’s Expert by Experience (EBE) panel, where I help review patient information. Being able to feed into Guts UK’s work means I can help ensure resources are written in a way that people can understand and trust. It feels good to know that my experience can help information and support for others navigating digestive conditions.”

“In 2019, I was diagnosed with Crohn’s disease, at 20 years old. I live in Leicestershire and work in communications and marketing within the healthcare and charity sector. Away from work, I love to explore the UK, research my family history and spend time with family and friends.

I enjoy taking part in Guts UK’s campaigns and joined the Guts UK EBE panel as I am passionate about being involved in IBD and other digestive conditions, especially when it comes to patient engagement. Through my own experience and connecting with others, I understand how powerful and important the patient voice is. It means a lot to be able to turn negative experiences of my own condition into something positive and be part of something that makes a real difference. Getting to be part of the research process and ensure the patient voice is heard is really special.”

"I was diagnosed with locally advanced squamous cell oesophageal cancer in October 2019. My original treatment was chemoradiotherapy, with intent to cure. In July 2020, I was re-diagnosed and had a total oesophagectomy (surgery to remove my oesophagus) in August 2020.

I am one of the lucky ones, having made it beyond five years after treatment. As well as walking for my hospital, I do patient involvement work, trying to pay back some of that luck. This includes being an EBE for Guts UK, especially as squamous cell is less common, meaning treatment plans are different to most oesophageal cancer patients."

"I am 62 and live in Liverpool with my husband and I have two grown-up children. After nearly 44 years as an NHS nurse, I am about to retire. Outside work, I love spending time with my family, running, travelling and knitting.

For years I experienced symptoms that were treated as diverticulitis with repeated courses of antibiotics from 2015 onwards. In 2021, after my condition worsened, I was referred for an urgent colonoscopy. I was eventually rushed to A&E in agony and was told a cancerous tumour might be blocking my bowel. I underwent emergency surgery and woke with a colostomy, which I still have. A week later, I learned the blockage was caused by complications related to diverticular disease.

I wanted to help improve care for others with diverticular disease, so became involved in the Diverticular Disease Priority Setting Partnership (PSP) launched by Guts UK and Bowel Research UK. Being on Guts UK’s EBEs panel means that I can ensure the patient voice is paramount, especially when it comes to shaping research. For any digestive condition, it’s so important that people receive the evidence-based information, support, and hope they need."

"I am a long-term sufferer of IBS with chronic constipation. I have floundered in the dark for 40 years with lack of access to resources about my condition. Finding Guts UK and then joining as an EBE has changed my life as I now have access to reliable, medically sound, and the most current advice from experts both by professional and lived experience. There is a huge lack of information, awareness and research to the general public, carers and families of sufferers which means so much misunderstanding and undervaluing of the impacts of digestive conditions. The information and support Guts UK gives is so positive for sufferers and wider circles.

My family and friends better appreciate the difficulties and challenges I and others endure. This lack of knowledge needs changing and Guts UK is the the only UK charity that funds research into the whole digestive system. My role as an EBE can prevent further suffering and indeed, dying, leading to better diagnoses and kinder treatments for people affected. To be the difference I want to see in this world is possible."