Professor Alan Perkins chairs Coeliac UK’s Research Strategy Board (RSB) and helped set our top 10 research priorities. Here’s his volunteering story:

“Back in 2010, I had to be taken to hospital after collapsing at home. I was diagnosed with septicaemia, which had resulted from an infection. This came up because I was anaemic with a low iron level of my blood. I didn’t have any other symptoms of coeliac disease, apart from being very tired. I put it down to the fact I had been working particularly hard. My job was working as a Clinical Scientist in the very same hospital where I ended up admitted as a patient. I was eventually diagnosed by an endoscopy. In view of my medical and scientific interest the gastroenterologist gave me a copy of the magnified images of my gut! I could clearly see the difference when compared with an image of a repeat investigation after following a gluten free diet.

I knew of Coeliac UK before being diagnosed, but afterwards the gastroenterologists and dietitians advised me to look at the patient information. The charity is a ‘one stop shop’ for help and support with the gluten free lifestyle and coeliac disease. Later on I was contacted by their office team who mentioned that they had an opportunity on the Coeliac UK Research Strategy Board. I decided to apply for the voluntary role and took the position of chairman after attending an interview.

I wanted to get involved because of my long standing professional interest in medical imaging and gastroenterology. I’d also previously undertaken clinical research studies in gastrointestinal physiology, swallowing, gastric emptying and gut transit. As Chair of the RSB I work with Heidi, Director of Evidence and Policy and her team, as well as other clinical and scientific volunteers, to oversee research governance and assess the research priority areas for patients and our members.

The coronavirus pandemic has caused serious financial challenges for Coeliac UK and we have had to manage our research funds very carefully. All of our meetings have been carried out online on Zoom and Microsoft Teams. Although there are some limitations, the internet has proven to be invaluable in allowing business to continue and provides a cost effective, environmentally friendly way of holding meetings.

I enjoy working with the Coeliac UK team and find the research both fascinating and rewarding. I’m always learning new insights into coeliac disease, as the work covers a broad range of subjects: including medical diagnostics, potential new treatments and a way of providing medical care, food production, diet and catering. My favourite moment was helping at the Coeliac UK Food Festival in 2018. It was really satisfying to help people who were recently diagnosed and struggling with symptoms and gluten free food choices.

If you’re thinking about volunteering with Coeliac UK, go for it! The office team are friendly and supportive, and you can really help people.”

Thank you Alan for sharing your story, and for your brilliant work on the Research Strategy Board.

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