I received my new annual membership card for Coeliac Uk (CUK) today. Every month I receive the magazine Cross Grain which is full of information about what the charity is doing, and once a year I receive their specialist book the Food and Drink Directory which tells me what products in supermarkets are safe for coeliacs.
The big coeliac questions
Personally I think most CUK bashing comes from too high expectations of what the charity should do. But I would be interested to know what the wider coeliac community feels. So here are my questions.
Is CUK worth the annual subscription fee?
What should be CUK role in the UK? – ie is it to champion the needs of coeliacs in the UK, should it focus on raising awareness, should it just provide a support service.
How can CUK become better and should it have to change?
My interaction with CUK
I had no interaction with CUK for about 11 years. This was due to the fact that my mum stopped finding them useful so she stopped paying our annual subscription.
We never went to any CUK events when I was a child, and although the CUK book was useful, Cross Grain came across as a boring repetitive magazine.
CUK bashing online
There has been some bloggers who have a rant against CUK for not being active enough in promoting the requirements of those who live with Coeliac Disease.
Personally I think they do a pretty good job, and it is often a lack of awareness amongst food manufacturers which causes coeliacs more problems.
CUK as a support network
For new coeliacs CUK is a really valuable resource of information and support. My best friend was diagnosed as a coeliac only 2 years ago and CUK were brilliant in helping her find useful information about her condition.
However coeliacs who I have met who have been coeliac for a long time are not always so positive about CUK. They still find Cross Grain a bit boring to read, with not enough new recipes or information about up coming regional CUK events.
In a strange way some coeliacs I have met seem to resent the CUK book because they would prefer to live in ignorance, and because it only comes out once a year. I think this is a bit of a silly view because CUK send out updates to the Food and Drink directory every month.
CUK regions
Also CUK regional support groups also take a lot of fire from ‘older coeliacs’ for not holding events often enough.
I have not been back with CUK long enough to really judge if their regional teams hold enough events. I missed the one when I first arrived in Cardiff and I have not yet heard of any more events.
When I was in Hampshire I was not part of CUK so I did not hear of any events. However the sausage seller in Southampton farmers market (where I met most coeliacs randomly after living for almost 5 years in Southampton) assured me that the local group did a wide variety of events.
I want this blog post to kick-start a debate about CUK, and what we can do to help this worthwhile organisation be most effective.
I would see CUK as having three important roles:
Helping coeliacs, especially those newly diagnosed;
Raising awareness of the coeliac condition among the medical profession and the catering trade; and
Sponsoring useful research.
None of that is cheap and, therefore, £25 a year annual subscription is not unreasonable.
I don’t know about local groups. I have had bad experiences of local groups in other charities, so much so that I even became a trustee of one because no-one in the group trusted the charity’s head office! I know of another charity that closed down one of its local groups because it was becoming too successful! That said, I am sure many coeliacs welcome the opportunity to meet other coeliacs and to exchange ideas and help. It must also be useful to have demos by food manufacturers, etc.
Hannah, you have some of your facts wrong in this article.
The magazine only comes out 3 times a year, not once a month as you state. I agree that when you were a child it would seem boring to you, and at that time it was in a bland, no photo, black & white A5 edition, not the full colour full size magazine we have now.
You say your Mum gave up paying the annual subscription – this only got introduced just over 12 months ago, so she didn’t have to pay any subscription for you.
Local groups are run by non-paid volunteers who give up their time to organise meetings and events, apart from all the other things that are going on within their lives. The one I belong to holds 4 events a year, 2 meetings, 1 annual dinner and 1 ‘day out’. If they were held more often I expect attendance would be not so good as the people may not be able to make them all. Indeed a lot of the members travel up to 40 miles to attend the events.
I have been coeliac for 13 years and have learnt such a lot from local meetings, and further afield sometimes. Cookery demos and product promotion from various companies are a godsend to many that attend them. As you have grown up now your Mum may have been able to pass on some cooking tips and other knowledge from such meetings, in order to help you become independent.
I also believe that CUK do an awful lot behind the scenes campaigning and research that the members don’t realise.
I am sorry if there has been any confusion over my statements about subscription fees to CUK.
My mum informed me that she had had to pay CUK something for Cross Grain etc when I was younger. If I have have this wrong then its because that is what she believed. I also genuinely believed that cross grain came out monthly! I wish it did! If you read the blog post and go on to the Coeliac forum linked at the side of this article, you will see that the post was deliberately a bit controversial to spark debate. I am not against CUK butr was reporting my experiences of this organisation which have been of mixed value.
Thank you for pointing out my mistakes, which I hope this comment will rectify.