Interview with Sarah Sleet, Chief Executive of Coeliac UK
“Like any charity, our aim is to put ourselves out of business!”
Coeliac UK Chief Executive Sarah Sleet has had her work cut out for her since joining the charity eight years ago. Having left her role at the Parliamentary and Health Service Ombudsman in 2005, Sarah has seen the membership of Coeliac reach 60,000, with 1,200 new members joining each month whilst the number of new diagnoses per year has almost doubled during Sarah’s stewardship. With Coeliac-Awareness Week taking place from May 12th – 18th and the EU catering legislationsconcerning food allergens being introduced at the end of this year, Sarah is a very busy lady indeed. Following on from this year’s successful awareness week, we were lucky enough to speak to Sarah. (For those unfamiliar with Coeliac UK’s work, since forming in 1968 the charity has worked tirelessly to raise awareness of the auto-immune deficiency, influence legislation and generally make life easier for its members; those affected by coeliac disease.)
Sarah, what made you leave your role as the Director of the Health & Parliamentary Ombudsman back in 2005 to take up the Chief Executive position at Coeliac UK? Were you personally affected by the condition?
Actually, no I hadn’t, and not long before I joined I didn’t know too much about it! I’d been working within the Not-For-Profit and specifically the healthcare sector, in research organisations and looking at waysto improve social policy. The Ombudsman is the most senior arbiter or complaints within the health service, so my interest in helping those receiving healthcare has been there for a while. At the Ombudsman I employed a staff member who suffered from coeliac disease and began to learn about his condition. Coincidentally, I had been thinking about moving into a new role for a while and around the same time I saw the Chief Executive post at Coeliac UK advertised, so I decided to go for it!
You’ve directed the Charity during a period of massive growth in coeliac diagnosis and awareness. Why do you think coeliac disease has become so prominent over the last few years?
You’re right – membership has grown massively for us over the last few years. Back in the early 2000s we had 53,776 (in 2002) members and maybe 6,000 new diagnoses each year. Now there are over 12,000 new cases of coeliac disease diagnosed each year. There are many reasons for this growth, but one of the main ones is the fact we know more now. For example, we know that it isn’t only underweight children with gastric symptoms that may have the condition. With some people the symptoms might start showing when they get a bit older, and rather than the previous assumption that anyone undiagnosed would be underweight, being overweight is just as likely at the time of diagnosis. And we are aware of many other potential symptoms we weren’t previously aware of. These include skin conditions, depression, neurological problems and a range of other symptoms. Knowing this means coeliac disease is thankfully becoming a lot easier to detect.
Do you think the number of cases of coeliac are increasing or just the number of diagnosed cases?
There is no UK evidence to suggest that the number of people affected by coeliac is rising, though recent research in Finland has shown the prevalence in over 60’s has risen from 1/100 people to 1/50. It is a huge piece of work to collate a real evidence base to be able to say with any certainty, but one thing that is sure is auto-immune conditions are rising in general.
Where does your funding come from as a charity?
We don’t get any government funding at all; around 1/3 of income comes from yearly membership fees. We raise around another 1/3 from various fundraising activities, of which Awareness Week obviously plays a big part. We do receive legacy money but as you can imagine this varies year-on-year. Finally, around 25% of our income comes from the food sector, through our licensing and accreditation arm.
And what do you use this funding for?
Like any charity, our aim is to put ourselves out of business eventually by seeing the end of coeliac disease! In the meantime, we work to make sure every day is as good as it can be for those with the condition. There are seven key issues we have identified and are continuously working on, with each Awareness Week focusing on one such issue. This year’s focus is on the availability of a core range of gluten-free foods within shops and supermarkets, and other issues we work on are the pricing of products, ensuring diagnoses are made as early as possible and ensuring people with coeliac are able to enjoy eating out. Longer term, we hope our research will find a cure for coeliac.
So tell us about these new EU regulations. What involvement have you had in them?
Well we are one member of a organizationof EU Coeliac societies, and I am currently a board director, with the secretariat based in the UK. We’ve been in ongoing dialogue with the EU Commission over the legislation and have been happy so far with the results. The guidelines bring compulsory information for food into one piece of legislation, removing confusion and requiring caterers to have knowledge of a number of allergens going into their food. Without our influence Gluten Free Regulation may have ended up being confused with regulations around health claims on foods which would mean that you couldn’t label cakes or beer gluten-free for example.. Thankfully we got the Commission to change their mind on that approach. There are also going to be specific conditions on gluten-free catering, which has given us much-needed additional security and is a victory for the gluten-free community.
This year’s Awareness Week focused on the availability of certain gluten-free products in supermarkets. How well are the supermarkets doing in accommodating those with coeliac disease at the moment?
During my time at Coeliac UK shops and supermarkets have come a long way. However issues remain, and one of these is labelling; specifically the words “may contain”. Too many producers are using this phrase as a get-out-clause and we feel that it should only be used when there is a genuine risk.
What in particular has pleased you about this year’s Awareness Week campaign?
It was great that this year’s Awareness Week campaign got the important media coverage to boost awareness of the shocking levels of diagnosis in the UK. There were over 100 articles on a wide range of websites as well as in newspapers and magazines and also numerous regional and national television interviews including on BBC Breakfast which we hope will help raise awareness of coeliac disease and encourage anyone who has symptoms to go to their doctor and ask for a blood test
Do you find most of the staff at Coeliac UK have a personal interest in the charity’s activities?
Around ¼ of our staff have the condition themselves or a close family member. Having experience of the condition is certainly an advantage initially, however it isn’t a necessary requirement and if a new starter joins without much knowledge of the condition we will do all we can to get them up to speed, including meeting those with coeliac disease, and giving a gluten-free lifestyle a go for themselves to experience the challenges faced by our Members.
What should a new Member expect when signing up?
Instant access to information that will help them manage their diet better, including (but not limited to) safe products, restaurants and news. As our staff never stop working these lists are constantly growing. They’ll also have access to platforms to discuss their experiences with other members of the community, and insight into research we are funding. I am constantly surprised and impressed by how active the community is and this is seen nowhere more than our twitter feed and facebook page.
You mentioned before your links with other European Coeliac societies. How about globally? And who leads the way?
The UK obviously! No, there’s great work being done all across the world. Australia and New Zealand work together in furthering the cause of those with coeliac disease and I’ve been particularly impressed with their research, as I have also been with the Canadians. It’s definitely a global community and recently we’ve helped people in India and Pakistan with their own societies.
Thanks for your time Sarah, good luck next week and we look forward to speaking with you again soon!
Coeliac UK’s website can be viewed here: https://www.coeliac.org.uk/home/
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