Comments from the Member Review Panel 2015
Members of the Member Review Panel 2015 share their thoughts on their experience:
Rachel Stringer is 35 years old and was diagnosed with coeliac disease on 14 February 2010. She describes it as "not being the best Valentine’s Day present I’d ever received but at least I finally knew why I had been feeling ill for so long".
Rachel had been treated for irritable bowel syndrome for around ten years before she finally went to the doctors once more, as along with the common gut symptoms, she also had terrible mouth ulcers. One tick in the blood test box was all it took and the diagnosis process began. Rachel has been a Member of Coeliac UK ever since.
I joined the Member Review Panel after viewing an article about the research projects on the Coeliac UK website. Although I have never taken part in anything like this before, I thought I would like the chance to influence which projects are funded and hopefully make a difference to other coeliacs.
The research summaries I received were extremely varied and I enjoyed reading through them. All of the researchers had taken the effort to make these understandable even though some of them were, as you would expect, quite technical or medical in nature. Many aspects of the disease including social factors seemed to be covered by the projects and therefore it proved quite a challenge to decide in which order to prioritise them. The process made me think deeply about what I think is important to a person with coeliac disease at differing stages of diagnosis and treatment, what we need, and how much difference the projects could make. I’m really pleased to be able to say I have taken part in the Member Review Panel and hopefully been able to provide an insight into the disease for experts who may not be coeliac themselves about what is needed for those of us who are. I think it is really important for Coeliac UK to involve its Members in these processes so we can have a voice and I will be happy to take part again in future Member Panel Reviews.
Gladys Jones aged 77, is a retired secondary head of a lower school and is currently managing an art studio. After experiencing three years of symptoms, including flatulence, diarrhoea, loss of weight and energy, whilst still teaching, she was finally diagnosed in 1994.
Since I was diagnosed I have appreciated all Coeliac UK have done and are doing, to inform the public and catering services about the disease, together with all research funded. Accurate diagnosis is vital. Raising awareness of coeliac disease as a disease and not a fad or fashion and the essential need to exclude gluten from your diet is important. I am especially interested in research, which can answer the question ‘why me?’ for each person diagnosed. All research will be relevant to someone, but some aspects of research will be applicable to more people, therefore it is useful when possible, to engage those people diagnosed with the condition, when choosing what research to fund.
Kevin lives in Leeds and is the Group Organiser for Leeds Local Voluntary Support Group. He has taken partial retirement and works part time for the Department of Work and Pensions. He is 61 and was diagnosed in June 2010.
I wanted to take part in the review because it is good that Coeliac UK want to involve Members and I saw it as a way of influencing future research. The process was straight forward and I will be happy to take part again.
Paula is 65 and was diagnosed with coeliac disease in 1988.
It's really good to see the amount of research interest in this condition nowadays and the new insights this is providing. I was really pleased to be invited to take part in the Review Panel. It was very straightforward. We received a summary of each project in plain language - so there were no technical terms to look up - and then we were asked to rank these in terms of which we thought should be funded. This was a great opportunity to take part in the work of Coeliac UK and I hope this will encourage other Members to have a go next time. I would certainly do this again.