My mum is a coeliac, which means she has a lifelong autoimmune disease that prevents her from eating wheat, barley, malt, oats and rye. Let it be known that, on top of this, I am a vegan (though I will usually introduce myself using my name first), so having us both round for dinner is a blast.

The thing is, though, that while I can sometimes cut corners in order to eat (I mean not that it happens often, but if I'm up a mountain, for instance, and an impenetrable fog descends, and someone offers me a Kendal Mint Cake, I'm not going to say no), and am able to survive unscathed if I eat in an establishment and they cut corners, my mum doesn't have that privilege. If she eats anything containing gluten, she'll be extremely ill, to the tune of  taking time off work and being more or less sofa bound for the best part of a week. And what's interesting-nay-irksome is that the practices of many establishments that claim to cater for coeliacs leave a lot to be desired when it comes to stringent rules.

I may be flat wrong, but I get the impression that in order to appeal to those who have decided to cut out gluten to feel healthier, some cafes and restaurants advertise certain products as gluten free, but may not have taken the necessary steps to ensure that they are suitable for coeliacs. I've seen GF cakes propped up against those that bear the offending article in abundance, oats scattered liberally on gluten-free muffins, and 'regular' croutons peeping out of a coeliac-friendly minestrone.

It shouldn't be left to coeliacs to check and police catering practices; like other diners, they ought to be able to enjoy a meal in the knowledge that staff know how to deal with the nuances of their illness. Sadly, this isn't always the case. And I know that, in the West, we are blessed to be able to eat out and eat in and enjoy food in abundance, but where good practice is claimed, it is important that businesses be held to account. My mum has been a coeliac all her life, and is very vigilant about what she eats when we go out; her vigilance often pays dividends, because staff realise that they have made a mistake prior to serving what they have assured her is a gluten-free option.

For those who are newly diagnosed with coeliac disease, or those who have had it for a while, I wanted to share a letter I wrote to a local restaurant that my mum and I often visit. I wrote to this establishment with the view to complain about poor practice, and to lay out what I wanted to see happen. The restaurant responded cordially, and ensured me that they would take the steps I suggested in order to ensure that the same thing didn't happen again. If you have had a less than savoury experience (pardon the pun), feel free to use this letter as a template, and do get in touch to share your stories/thoughts.

To whom it may concern,

My name is Rosie and I am writing on behalf of my mother, who has been a coeliac all her life. I wanted to draw your attention to what we have experienced as very poor practice with regard to the gluten free food on offer at your establishment, and would appreciate it if you acknowledged receipt of this email, and explained how you will action the suggestions I make below.

[name of restaurant*] is a place that we enjoy visiting, and hope to continue to do so. However, we have had two experiences at the Harrogate and Ilkley branches that have made us both reluctant to dine there again until changes are put in place; at the Harrogate branch, my mother was served a gluten-free soup with a side of bread made from wheat (I document this retrospectively and am not sure what the date was), then the same thing happened again at the Ilkley restaurant on the 28.01.19. On both occasions, my mother checked - as she always does - with the waiter as she was given her meal whether the bread was definitely gluten free, and on both occasions, the waiter recognised that it, in fact, was not. On both occasions, the food was sent back to the kitchen and the bread replaced, however, the plate was not replaced, meaning cross-contamination would have taken place, rendering the bread inedible.

The waitress at the Ilkley establishment was very apologetic and offered us a discount of 50% on our lunch, which we really appreciated. I can't account for what happened at the Harrogate branch as it was a while ago, and on its own wouldn't have merited a complaint had the same thing not happened again. However, as this has now happened twice, I wanted to alert head office to this mishap and ask that the following happen:

• My mother and I would appreciate an apology from *
• Going 'gluten free' as a lifestyle choice in a bid to improve health and coeliac disease are two very different things. If coeliacs eat gluten, they can be extremely unwell, often for weeks at a time. I would urge management to ensure that all their staff receive refresher training/some sort of reminder when it comes to managing allergies - a starting point might be to disseminate this email - in order that this kind of carelessness be avoided in future. 
• We want to see good practice across the board, not just with regard to meals. For instance, we have noticed that gluten free and non-gluten free cakes are stacked very near to each other on the stands - there ought to be a separate shelving system in order that no cross-contamination takes place.

​ I would like assurances from you that steps to this effect will be taken. To emphasise, we really like the restaurant and want a relaxed and enjoyable dining experience, and to know that we are in safe hands. Sometimes, mistakes happen; however, mistakes akin to those described in this email can prove extremely costly to some diners. It is on this basis that if I do receive word on how your establishment will effect positive change, I intend to contact Coeliac UK and ask that they recommend steps to help the restaurant better accommodate coeliacs.

Regards

Rosie

If you’re passionate about a cause, be it related to personal experience or otherwise, one way to further any campaign is by meeting with a local Member of Parliament. However, not only can certain illnesses or impairments make attending a meeting both physically and mentally challenging – sometimes impossible – the prospect of putting a case forward to an elected MP can often seem daunting.  
 
Having met with my local MP several times in the last few years, I have put together a few tips on how you might structure a meeting, as well as navigate the interpersonal dynamics in the room. This advice isn’t prescriptive, and there are many ways of going about conducting a meeting, but I’ve found the following to be helpful:

1). Set an agenda

I usually go for a three-tiered approach. I firstly introduce myself and why the cause at hand is of interest or concern to me. I then briefly explain the nature of the cause (taking care not to traverse the same ground as prior emails will have covered, as this can waste time) before going on to present one or two clear ‘tasks’ that my MP could undertake on my behalf.

The meeting isn’t a talking shop; that is, while it might be useful to meet with your MP to raise an issue’s profile, it’s a good idea to have a suggestion for the type of action your MP could take. Provided this action is within their means (be aware, for instance, that MPs cannot interfere with independent bodies or speak at all debates), they will usually do this within a few weeks, then get back to you. I find that having a few brief notes to hand can help me remember key points I need to cover.

2). Be mindful of time

Slots are usually half an hour long, and either your MP or their case worker – who will sit in with you and take notes – will keep an eye on the time and, if you’re getting towards the end, prompt you regarding what they can do to help if time’s ticking on and that area hasn’t yet been covered.

However, it’s often a good idea to envisage how long each item on your agenda will take, prior to the meeting. Try to allocate the lion’s share to the actions you’d like your MP to take, as this is the most important reason you’re there. They also need time to respond to your request(s) in order to give you clarity on any limitations that might prevent them from taking the action suggested.

3). Articulate your needs

If you feel able to be open about aspects of your illness (this isn’t easy for everyone), it might be helpful to send an email in advance of your meeting, or have a brief conversation before the session starts, in order to alert your MP as to any specific requirements or difficulties you might have.

For instance, if your illness means you suffer with brain fog or memory loss, tell your MP that this might occur in the meeting and, if you feel able to, let your MP or their case worker know what might be helpful in that instance. Likewise, if you have issues with sensory processing, you could ask that the lights be dimmed, or that you go to a quiet room, in order that you’re able to stay focused. MP’s offices should have wheelchair access, but do alert them prior to your meeting as to any other access requirements you might have. And if you are affected by chronic fatigue and you start to feel very tired; stop. You can always meet with them again or finish the discussion by email.

4). Don’t be blindsided

MPs are (usually!) very intelligent, and, when it comes to getting out of something or winning an argument, they are used to trotting out soundbites and maxims. Politicians will usually be upfront about something they can’t deliver on, and should explain why, but in my experience, they might also use sweeping statements in response to your specific argument which you may experience as an affront to your cause.

Yes, they are articulate and smart, but you know your campaign well and you have a voice, so don’t be thrown off scent or left doubting yourself or your cause. Some MPs have turned evasion into a fine art, but you’ve done your research and you know your stuff: stand your ground.

5). Ask for clarification

If you haven’t understood something, ask. Your MP might waffle on or blind you with jargon, so if you’re unclear on something, ask them to go over it again, or perhaps clarify any points you found particularly woolly. You’re not there to outwit them or be outwitted; it’s not Question Time. If you don’t ask for clarification on something for fear of seeming stupid or because you’re not sure what to say, that defeats the object of the meeting. I find it helpful to ‘do a Columbo,’ usually to the tune of, ‘let me just check I’ve got this right; you’re saying that … ’