Part 2...

As a group organiser we know that you raise awareness of a gluten free diet all year round, what other ways do you promote the condition?

At events we are always raising awareness; we always have a small stand at coeliac events with displays for people. Coeliac UK are always really helpful, if we ever need any information to take to a coffee morning etc. they are always happy to oblige. Cumbria Link also invite us along if they do any events surrounding coeliac disease or osteoporosis because obviously it’s a related condition. Similarly, if we do any events we invite the team from the osteoporosis society. We take with us our information table and offer advice and support to people who attend. The local hospital have also invited us to have a permanent table there for people who have recently been diagnosed with coeliac disease or come in for check-ups.

As well as speaking to newly diagnosed patients at events we know that you’re also a coeliac lifestyle advisor, could you tell the readers a bit more about this?

Well, that was actually suggested by Dr Chaudhri, we’d recommended him for GP of the year award and we were so pleased when he won it! We were down in London and he just said that he might have a job for me if I was interested. Basically, when you’re a newly diagnosed coeliac patient it could take over 6 weeks before you speak to a dietitian who explains the condition in more detail and gives you advice on what to eat and how to manage your gluten free diet. In that time, as many coeliacs know, you’re really confused and reluctant to eat anything and feel quite isolated. As a coeliac lifestyle advisor, the GP or the dietitian gets in touch with myself and I arrange a home visit with the newly diagnosed coeliac. I then visit the patient with some information and gluten free samples and just try and get them started. I explain all about the availability of gluten free foods, where to buy them from, safe places to eat out for people with coeliac disease and all about Coeliac UK. It can be really hard when people are first diagnosed with coeliac disease so it just means that the information I provide can get them back on their feet and they can start to manage a gluten free diet.

I can imagine newly diagnosed patients are very grateful to have someone to talk to, what are the common questions you’re asked?

Mainly about how to get hold of gluten free foods and how to go about ordering gluten free food on prescription. It can be a really cloudy area but thankfully, in Cumbria, we now have what’s called the pharmacy lead scheme. The pharmacy lead scheme is great because it gives people more control over what they order and people don’t have to go into their GP every time for their prescription. I think prior to the scheme, coeliacs felt guilty about ordering the gluten free food and felt that they were being a nuisance to their doctors. Now, when people are diagnosed with coeliac disease the GP provides the patient with a registration form for gluten free food on prescription. The patient can take that form into a pharmacy of their choice and order gluten free food within their unit allowance each month. We’re really pleased because the new process has proven to actually save the PCTs money. It just gives coeliacs a choice over what they can order without feeling that they are being a burden to their GP and also it helps them financially.

Finally, Jean what is your favourite part of your job as a Coeliac UK group organiser?

My favourite part of the job is attending the Food Fairs, it’s a good opportunity to meet the manufacturers and it’s a great time to try before you buy and taste all of the products. We don’t need to ask “is it gluten free?” as we know it’s safe as only gluten free traders attend! At the moment I think our group has around 480 members and we are always grateful for people on hand to help out and volunteer. Our annual food fair at Penrith is always really successful, last year we had over 1100 visitors so it’s fantastic to see such a good turnout.

Read Part 1 of Jean's interview with DS-gluten free

DS-gluten free want to thank Jean for taking the time to talk to us about her role as a Coeliac UK group organiser and we wish her all the best for the future. If you are interested in becoming a member of Jean’s group in West Cumbria please email Jean with your details. The Penrith Food Fair will be taking place on Saturday 5th November at Rheged Discovery Centre, Redhills, Penrith, Cumbria CA11 0DQ. This year our home economist Gill will be hosting two cookery demonstrations, for more details please visit the Coeliac UK website. If you want to find out more about the local group in your area please contact Coeliac UK for further information.





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