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Should Coeliac UK Not Be Led By A Health Expert?

Benjamin123
Benjamin123

Straw poll - Hilary Croft is CEO of Coeliac UK. Hilary has no background in health or diet. She is a lifelong career marketeer, including early career phase at Coca Cola. Do we trust this person with our health, or should we lobby for a CEO with diet/health as a central concern and career? Should we even accept a CEO of CUK who has no medical/health/research background in coeliac/dietary-related illness/auto-immune conditions?

33 Replies

I worked for an engineering firm, which had a CEO who didn't have any engineering background, but it didn't really affect the work we did or how successful we were at winning work.

In terms of CEO, I think it boils down to what you need of the CEO. A medical background with no business experience may be the wrong choice, just as an engineer with no business acumen would also be a risky choice.

As it stands, I'll just have to say I don't think I have enough information to vote either way.

Kim1950
Kim1950 in reply to Cooper27

I'm with you on this one Cooper27. It doesn't take long for a smart person to grasp the fundamentals of the business they're running and they can always hire technical help if need be. However I've never been a member of CUK. Never seen the need, my wife does stirling work cooking from scratch, it's a more healthy and safer option. Beside which it tastes a good deal better!

Benjamin123
Benjamin123 in reply to Kim1950

Would it be so easy if you had to navigate solo without your wife taking charge of the cooking?

Kim1950
Kim1950 in reply to Benjamin123

Yes it would, I can cook very well. It's just that we have a division of labour, she cooks and I clean up the kitchen. Works quite well, although I do cook whenever I can.

🙂

Benjamin123
Benjamin123 in reply to Kim1950

Sounds like the perfect balance

👍

Benjamin123
Benjamin123 in reply to Cooper27

Thanks for your input Cooper27. That's a logical take, and makes sense. Part of me, however, does not think anyone will 'get' coeliac from the complexity of the lifestyle and challenges unless they have been there and done it. It's similar to disability charities being led solely by able-bodied CEOs/Senior leadership with tokenist gesture on Board of Trustees or in lower ranks in the charity. Business is business, but a personal perspective will make a world of difference.

Cooper27
Cooper27 in reply to Benjamin123

It's just a difficult thing to comment on. I know Myles Fit, the Scottish lead, didn't have Coeliac disease but his daughter did, so he did live it (he's no longer in CUK). I don't know if Hilary has any real life experience though.

Looking from her history, it looks like Hilary has a history of marketing and reforming business for online presence, which does make some sense.

Benjamin123
Benjamin123 in reply to Cooper27

Suppose, ye, CEO background reflects direction they want to take the charity. It would be interesting to know if she has direct experience though. Might Google that one to see what's out there.

Hello Benjamin123 I understand why you feel this and in my opinion the real big problem with Coeliac U.K. is their stakeholders, as their stakeholders are the Codex prescription food companies, low gluten food co’s. Coeliac U.K. used to say that we couldn’t have zero gluten because we can’t test for zero gluten.

However we now have a very accurate mass spectrometer test but this doesn’t say how much gluten is present so Coeliac U.K. dismiss it because it doesn’t differentiate between allowed levels of gluten and over 20ppm.

So we have a conflict of interests with the charity their stakeholders and the needs of coeliac.

I understand why you say this about their CEO because it’s blatant CUK don’t have a clue how harmful gluten is to coeliac and have a financial interest in coeliac consuming allowed levels of gluten!

Codex should be a max safety limit not compulsory as I see the cross grain symbol like a skull and cross bones ...a warning it contains traces of gluten.

I think coeliac have to decide who they support other coeliac or the biggest coeliac charity in the world because of their stakeholders and I vote with my pocket and have nothing to do with CUK or their propaganda.

So their CEO has to be clever with words not health or diet.

It isn’t what we see it how we see it.

Benjamin123
Benjamin123 in reply to Jerry

That's a good analogy on the 'skull and crossbones' - I'm inclined to agree with you on that. Similar comments on other forums and news comments sections whereby cross-grain is considered the lowest bar in coeliac world and one to be avoided. I'm unsure how much patient/end user involvement there is at CUK either and how vocal they are allowed to be in giving steer and influence. I pick on CUK here, but I see the charity sector as having this issue in the main as it's highly income driven and PR savvy.

CUK is a business.

I'm with Jerry on this one. I was a member of CUK for the first two years, mainly to get access to the Directory. Then realised many of the foods were making me ill. Now I have nothing to do with CUK. I don't trust their judgement on foods that are 'safe'. Now I eat primarily SCD, Paleo, Whole30, Keto and all meals prepared from base ingredients. Best I have felt in years. If people find CUK useful to them, then I wish the organisation no ill, but it is no longer relevant to me.

Benjamin123
Benjamin123 in reply to erdfreak

Thanks Erdfreak - I'm with you on that one. Home made from scratch is the safest option all around. No always convenience based if you have to travel/stay away from home, but it's the only true guarantee of safety.

I think the CEO of CUK should have a medical background. I am dismayed to hear CUK stakeholders are the big prescription food companies which must affect their decisions. I am a member of CUK and found their information very useful when I was a new coeliac but I dont think I will be renewing my support in the light of this.

They are good in taking things so far, but after that they do fall short on the dietary advice and willingness to accept what coeliac sufferers are saying. It's like cigarette companies sitting on the Board of lung disease charity.

Just to add to this Hilary Croft is also listed with the Coeliac Trading Company and they share offices with CUK and do the training courses for eateries for them.

Please see:

suite.endole.co.uk/insight/...

So I imagine is well known to Coeliac UK and I think this helps to answer your question Ben.

Benjamin123
Benjamin123 in reply to Jerry

Thanks Jerry. Much appreciated.

I don't think anyone who has not had celiac disease or has not had someone close to them with celiac really understands it. I have read books about the disease, and even the doctors who are experts in that field do not understand it. Even my husband, who is very supportive, really does not understand it. For some of us, it is so much more than abstaining from gluten. So the closer you get to having an executive who has some knowledge of the medical side of the disease and all of its ramifications is better than one with just a business background. To me that only makes sense.

Benjamin123
Benjamin123 in reply to eliz45

Thank you Eliz45. Yes, it does make perfect sense. The CUK press release bio emphasises Hilary Croft's marketing capabilities and food industry experience, so that's a reasonable hint on why she was hired. No mention as yet on her own direct relationship to coeliac if there is one, but will carry on Googling. To me, this is a CEO brought in to maximise the gf food manufacturing offer and up the profile of CUK. That does not make me feel comfortable or reassured.

Jerry
Jerry in reply to Benjamin123

I believe her son has coeliac to be fair on her Ben.

Cooper27
Cooper27 in reply to Benjamin123

One thing that did occur to me, is whether it's discrimination to select a candidate based on health condition, over experience. There is such a thing as positive discrimination, so I can say to my boss we need more diversity in the office, but if he has a choice of 5 candidates and chooses one based on gender/ethnicity alone, it's discrimination.

Could coeliac disease count as a disability, and would specifying a candidate must have coeliac disease in the job advert be discriminatory?

Hidden
Hidden in reply to Cooper27

10 years ago I used to work for a retailer who sold clothes for a specific body type. We were allowed to specify in the job advert that the applicants must be that body type.

Things might have changed by now, but it was once allowed!

Edit to add:

From Google:

"Are there any circumstances in which an employer can specify, for example, the required race, gender, sexual orientation or age of job applicants?

Yes, there are certain defined exceptions in the Equality Act 2010, known as occupational requirements. These, broadly, apply when a job can be performed effectively only by someone with a particular protected characteristic, eg either a man or a woman, a person of a specific racial or religious group, a person of a particular sexual orientation, a disabled person or a person of a particular age group."

A case could easily be made I think that a CEO of a charity like CUK must be coeliac or at the very least have an immediate family member with it.

Benjamin123
Benjamin123 in reply to Hidden

Good information. Thank you.

Benjamin123
Benjamin123 in reply to Cooper27

Good points Cooper. I have checked, in the past, if coeliac covered by disability definition but it's not unfortunately. It should be given the umbrella acceptance of the definition in terms of lifelong conditons, but it doesn't. Which means (in my experience) when I went to work event and had ticked dietary requirement (no gluten or dairy) but only food item provided was pizza and told by the boss's PA I would just have to eat it, is not covered by law. Perfectly legally ok for your employer to make you ill/starve you as a person with coeliac.

It's a difficult one! On one hand, when I was teaching in an FE college, after experience in small businesses, I used to complain about the college being managed by people who had been promoted from teaching, with no business management experience - as Cooper27 says, being a good manager can be more important than coming in with specific knowledge.

On the other hand, the fact that CUK has recruited someone whose main strength is in marketing tells us all we need to know about the priorities of the organisation. This CEO will probably be excellent at addressing their priorities - the problem is that the priorities of CUK are not our priorities, as real life coeliacs.

In common with others, I joined CUK as advised when newly diagnosed, and I benefitted from some of their factsheets to help me understand my new condition. I have felt no benefit at all from their 'approval' of commercial, processed foods, and I find their emails, magazines and annual booklet completely pointless - they are just advertising for their paymasters. My first two years are almost up, and I will not be renewing my membership.

Very good points. They promise much, but under-deliver on the practical health front. Yes, just seems to be a manafacturers market place. Such a shame it has diverged off in this direction. I get the financial pressures to keep a charity going, but it is just cashing in on a health condition to benefit of manufacturers, not the end users/patients.

Good question Benjamin123. I'm not a fan of CUK by any means, and I do not like how they undermine individuals who raise valid questions on the efficacy of their work or their denial of the extent of damage happening to individuals with coeliac as a result of failure to address the % who can't tolerate allowed ppm. I also see them as lax on how effective they are at allowing their cross-grains on products that do make people ill, or their allowance of malt barley, etc. I would like to see more effective research that is informed by our requirements, not by manufacturer sway. Not so familiar with Hilary's track record, but do remember reading somewhere that her child has coeliac/gluten intolerance, so that helps in a way, but I do see her background as manufacturing-driven and that worries me. I'm not sure how much 'patient' involvement they have at CUK, but they don't listen to a lot of us from this site, and I suspect they only listen to the voices of those who can tolerate the current 20ppm levels and/or are willing to agree with them all the time. Charities in general seem to get away with bad practice that businesses would not, and I don't think the Charities Commission gives a fig about investigating them. In an ideal world CUK would be led by someone who does have coeliac and that each person 'at the table' would be a sufferer/first relative aware and manufacturers would be considered a secondary voice, not a primary one. I do think, as I've argued in the past, we need a new more representative and patient-led charity for those of us who need a 0ppm life.

Benjamin123
Benjamin123 in reply to Mise

Thank you Mise. I like the idea of a new charity to represent the under-represented. It would need to focus on health and health recovery, and proper researching of the prevailing problems that impact us all. I'd like that charity to lobby for penalties for those who advertised gluten free but fail to test their products, or serve up food that is full of gluten. Not enough public awareness as to the impact on health. Can't recall ever seeing anything in national press/mainstream media that was penned by CUK, yet our condition is more prevalent than many of the chronic health conditions that get more 'air time'. It never ceases to amaze me that coeliac is the only auto-immune condition that currently has a cure, and that cure is complete cesation and elimination of gluten from the diet, yet our benevolent coeliac charity spends it's airtime/social media time promoting s**t additive filled products that contain an 'acceptable' amount of gluten that seems to benefit no one but the manufacturers and them. Go figure where the loyalities are ££££££. Coeliac is considered a luctrative 'market' rather than a health condition requiring robust research and standards. Keep 'em all ill, keep 'em all gaslighted and keep pumping 'em for cash!

Jerry
Jerry in reply to Benjamin123

Hey Ben a coeliac charity for coeliac who can't eat any gluten sounds perfect to me...If only they cared about coeliac rather than money...But what do I know I'm only a coeliac who cannot tolerate gluten.

Benjamin123
Benjamin123 in reply to Jerry

I don't think anyone should be eating any ppms gluten with coeliac. It's a fantasy notion drummed up by non-coeliacs. Give it another decade and the weight of research against this fallacy will be too much for the myth to remain.

I totally agree that this is a good question to be asking and it's hard to understand why somebody with no expertise in the field was appointed. Try Beyond Celiac website instead

Jerry
Jerry in reply to Hil101

Hey this is great advice Hil101 as Beyond Celiac seem dedicated to supporting coeliac/celiac here’s a link:beyondceliac.org

If it’s got gluten in it then it isn’t gluten free it’s obvious really...

Benjamin123
Benjamin123 in reply to Hil101

Thank you.

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