Sarah Sleet, CEO of Coeliac UK, came to speak in our area recently, and although much of what she said was motherhood and apple pie stuff, there were a few really significant points.
The first was that there are 900 new members of Coeliac UK per month. Per month!
The second was that it costs around £25 per member to keep this charity going – and that Coeliac UK is largely reliant on donations from its members. At the moment it is free to join.
The third is that most people do not make donations. I forget the exact numbers (should have written them down) but somewhere in the order of 60% make no donation at all, and that only about 8% donate over £20/year.
It doesn’t take an economic genius to see that there is an ever increasing shortfall between income and outgoings. Yes, I know that some of CUK’s income comes from advertising in the magazine, or from sponsorship from the big manufacturers, but for the most part the income comes from us, the members.
The decision to be made is: should the charity move to a subscription basis, or stay on a donations basis?
This isn’t an easy decision for the trustees to make, and the implementation of the subscription would be tricky (what about families with more than one coeliac?). It will go to the membership for a vote before any final decisions are made, but it is something to think about over the next few months.
In the meantime, I shall commit to increasing our own donation to Coeliac UK. I – for one – hadn’t realised the cost per member of running the charity, and therefore wasn’t donating enough. No doubt this is true for many other members, and so perhaps CUK should think about making this clearer to the membership.
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I for one would not miss the Coeliac UK charity.
I go my own way as I do in many things, which I find out is often best. Certainly for me. I’m afraid that charities like Coeliac UK are being usurped by the Internet, which gives you the information you want at your fingertips.
The lot of coeliacs will not be improved until the NHS realises that the one in hundred of the population who have coeliac disease are a severe economic drain. Not because of the disease they have, but because of all the drugs and treatments that are given to coeliacs because of misdiagnosis.
We live in a time of massive change in the way we handle and access information. Most of it will be free. Charities that go closed and charge their members for their services will cease to exist.
It’s a very hard world out there.
James Miller
James, you make some very valid points.
I agree that the internet can provide information, but those people new to CD may need a trustworthy source of information, at least initially – I’m sure we’ve all seen incorrect information out there.
I also agree that the 1:100 are a drain on resources, and that earlier diagnosis would reduce this. I hope that CUK are pushing for exactly this. There was an article in today’s papers about CUK protesting against the cut in gluten free prescriptions in Northamptonshire – this too is the sort of work they should be doing, in my view, and for the same sorts of reasons that you suggest … if people don’t stay on a gluten free diet, then the risk to their health, and the knock-on effect on health budgets, will be significant.
CUK does provide a useful service for newly diagnosed, I think, and we do still use the Food Directory – though not nearly as much as we did in the first few years.
Would you recommend that CUK should stay with donation-based funding, or do you see CUK as completely irrelevant now?