To expect that a hospital should be able to meet my dietary needs?

[Balloonsandroses]

Pretty sure I’m not being unreasonable! Been in hospital 24 hours now and just been to eat a meal for the first time (my choice). There is nothing gluten free. I have coeliac disease which they’ve known since admission. Gluten makes me vomit. So I can literally eat pepper, cucumber and lettuce. To add insult to injury this is a psych ward and I was admitted under section (still furious about this) so I can’t even leave and go and buy some food.

It's truly ironic as most of us coeliacs will be admitted into the same hospital we were diagnosed in and they don't provide us any food we can actually eat safely!

Is it all autoimmune diseases that you think the NHS should ignore or just this one?

Yep, as a type 1 diabetic I love the fact that not only is the food entirely carb, they take your insulin kit off you and then refuse to actually test your levels or give you any insulin.

@Simonjt yes it's ridiculous luckily Mt dad has a libre 2 with the reader so it would be going off like mad every few hours so it couldn't be ignored!
He has to pay for it as his trust won't issue on prescription but it's saved him a number of times in the middlenof the night when his sugars dropped dangerously low.

I had this previously when I was in hospital, so thankfully when I was in for spinal surgery recently I knew to take enough food with me for my stay this time (different hospital, same problem).

YANBU, but I'm afraid I am not surprised. I learned about this the hard way when my DS was about 4 and he was admitted urgently to the gastro ward of a large children's hospital, but despite the sign above his bed listing his allergies (which include dairy) he was given a cheese sandwich and a yoghurt and no alternative was available. It was pretty stressful being alone with a sick child in a hospital several hours away from home in a city where I know absolutely nobody, trying to get him something to eat. I think they brought him some dry toast in the end. Since then I have always taken food with us to every hospital admission. Sometimes it's been better than others but I don't take any risks now.
I don't have any advice sorry, but just wanted you to know that I can empathise and I hope that you get something to eat and that you start to feel better soon.

This happened to me when I stayed in for a few nights after DD2 was born. I kept marking down on the food form that I'd like the gluten-free breakfast - this didn't appear once. And I selected the gluten free options on the meals but they kept bringing me pre-wrapped stuff that listed wheat on the ingredients, which then made me completely doubt that the non-pre-wrapped food was actually gluten free either.

They tried to take my insulin off me in hospital & I refused. In my experience I am the only one who knows how my body responds to different food/activities, certainly not some random HCP.

I also remember being admitted, my diabetes specialist came to see me & suggested I had a low carb breakfast - he was shocked when I pointed out that my only choice was between cornflakes & toast (both big no-nos for me).

There's no joined up thinking between medical need & hospital food.

Basic decent nutrition is an important part of health and recovery. If people are vegan/vegetarian/kosher/halal just how good for them is it to tell them "eat bacon or starve"? How quickly will they recover? They also pay taxes and contribute to health care just as much as burger eaters.

Either hospitals need to start saying publicly "we don't have budget to cater bring your own food" or they need to cater properly. But nobody will say this because we are all wedded to pretending its free to use and defend the indefensible and then act puzzled when people struggle to recover.

Id actually be fine with a bring your own microwave meal system so long as there was a fridge to keep it in.

@JarByTheDoor just - thank you for making me feel a little less alone on a very lonely day! Not sure I’ve ever met anyone else who’s taken maois let alone also been through admission and has a coeliac diagnosis.

She's been sectioned. She has a medical condition which means she cannot eat gluten. From her posts, she's in no fit state to organise herself a Deliveroo. How on earth are you concluding the OP is unreasonable? Unless we're mental health shaming now.

OP, have you told your husband about this?

I did say that food for vegans should be available however it is not the same life and death situation as coeliacs needing gluten free food and pretending it is is just stupid.

I think when sectioned which means they are removing your freedoms to leave and sort out yourself it's the absolute minimum you should expect to have food available for your dietary needs when it's medical dietary needs.

When I went in for a hysterectomy earlier this year I took my own biscuits etc as intolerant to wheat because I didn't expect them to cater for someone turning up for day surgery.

What do you think might happen if someone who has eaten no meat for decades suddenly introduces it into their digestive system? After DH's surgery it took a couple of days for everything to start working again, imagine what chaos would have been going on in there if he'd chucked in half a pig. Meanwhile it takes absolutely no extra effort to make one of the meal options with fake soya mince instead of the real stuff and is probably healthier (for those without a soy allergy). Too much meat is a cause of bowel cancer.

No one is expecting delicious hospital meals but at a bare minimum they shouldn't be making sick people sicker.

Really??? I’m vegan eating animal products would make me vomit - actually I wouldn’t do it, (I’m also intolerant to eggs and milk and my body doesn’t digest meat making me ill) just because you don’t eat a certain way doesn’t make something a fad. There’s always one idiot that can't respect someone else’s choices. Do you want to insist a Muslim eats a ham sandwich?

I am so sorry that you are poorly just now and have needed to be sectioned. It must be very tough.

Not catering for your medical need for a gluten free diet is absolutely out of order. I can understand that sometimes they might fail over dietary choices, but having coeliac disease is not a lifestyle choice, is it a medical problem.

When my late OH, who had Parkinsons, was admitted to hospital I was nearly tearing my hair out - his drug regime was very finely tuned in order to keep him as stable as possible. I took in his drug dispenser box where all the drugs were laid out according to the time he should take them, but they took that away and would only use drugs from their pharmacy, which did not have some of them, because they had to be ordered in specially. So, as well as the problem that caused his admission, he also had a huge disruption to his drug regime, which caused a massive decline from which he never recovered. My DDs and I were at the hospital all day every day trying to persuade the staff to give him the right drugs and to administer them in yoghurt so that he could swallow them - and don't get me started on them letting him dehydrate in spite of us continually telling them he had not been able to drink. Sigh.

It is so sad because the nurses etc. are lovely - they are just tied by rules and so busy they cannot keep tabs on what is going on.

OP - I hope you will be well again soon. x

Similar issue when in hospital with gestational diabetes. Everything was simple carbs (potatoes/ plastic bread) , or had aspartame/ saccharine in which I am allergic too. Couldn’t get any plain yoghurt, or even a piece of fruit! My husband was bringing me food in.
YANBU- especially when you are reliant on the staff as you haven’t liberty to pop out to get something.

I had to be induced with DS due to gestational diabetes, but was in for a few days first because they didn't have space on the delivery ward but wasn't allowed to go home. Despite being in for diabetes there wasn't a meal I could actually eat on the menu. I lived in m&s buying chicken basically, but they kept going on about my sugar level and the baby (understandable but frustrating!)

I really feel for you OP, can your husband contact them on your behalf or is there anyone higher you/he can speak to?

If she were Diabetic she'd get insulin and a carb controlled diet.
Gluten free is the only treatment for Coeliac disease (it's out medicine), it's not some fad that we can cheat a little with no ill effects.
There was a Coeliac patient who died after getting fed gluten in Wrexham second hospital as she's been transferred and both managed to screw it up. She was vomiting from it, I wouldn't be surprised if she had choked, she was fed weetabix.
When you are given a menu to choose. Write in block letters across the bottom Coeliac Gluten free please.
I did that for patients when I worked in a local hospital and it worked for Diabetics and vegetarians.

Do you realise if the OP eats gluten she’s likely to projectile vomit and shit herself for at least the next 24 hours? Plus feel ill for longer than that and it increases the risk of cancer for her? If some was anaphylactic to peanuts you wouldn’t say this?

OP - my Dd is coeliac, lactose intolerant and vegetarian (admittedly by choice). They have never managed to cater for her. Dry jacket potato maybe, or a box of iceberg lettuce and cucumber. And don’t get me started on the gf bread they will try to put in a normal toaster 😁.

I don’t blame the staff, I used to work for the nhs and before Dd was diagnosed I’d happily put gf bread in the ward toaster, nobody ever taught us about cross contamination. And yes, the bread is pretty inedible if not toasted.

i’d advise emailing PALs and getting people to bring as much stuff in as possible.

Canadian problem here but I was admitted during pregnancy because of water breaking at 7 months. I had gestational diabetes and I was managing it remarkably well on my own.

Since we had no fridge in my room we were ordering out to meet my requirements as the menu had things like pancakes and sugary cereals. The nurses were upset with these choices and insisted INSISTED that I must order from the hospital menu. As well as my dietitian. I tried this for two days and my sugars sky rocketed and they started giving me insulin.

I want to emphasize that we don't normally eat out constantly. We cook at home almost every single day. But because of the hospital menu limitations we had no choice in the matter!

I stated ignoring their advice and it was under control again and no longer needed insulin. My nurse argued with me about it despite the obvious signs that my sugars immediately got under control again. She even shouted at me about it. Like idk are the nurses egos attached to the hospital menu or something? I'm sorry your menu is not as good as you think it is honey. Get over yourself. I think the thing that made me angry though was that I tried to calmly explain myself but she accused me of shouting at her! But she was clearly raising get voice and talking over me.

They then started passive aggressively turning the lights on full blast multiple times at night waking myself and my exhausted husband up multiple times a night. One of them laughed at me and dared me to check out and another nurse told me it was my fault because I'm overweight. I can't deny my weight played a role but... Why was it necessary to be so unkind... I stayed there for a month. It was a matter of life and death for myself and my baby. I felt trapped in a den full of bullying nurses. I contemplated suicide but refused for my baby's sake.

But I think I would rather die then go back to a hospital now. I never ever want to feel that way ever again...

This is my worst nightmare about potentially getting sectioned. I was admitted for a week after the birth of DC2 and despite the fact I'd said I have a kiwi allergy, that causes anaphylaxis, they still managed to try and feed me kiwi fruit!!! It's not exactly hard to avoid usually, and it was written on a bright orange sticker on the front of my notes.

Ignore the MH shamers on here OP they wrecked my thread last week too.

Hope you actually get the MH help and support on the ward that they're not sorting in the community, I'm still fighting to try and get any help at all for my MH and I'm just so bloody tired of it.

Yep my mum who is coeliac had this. Only offer was toast for evening. Offered cereal in the morning...

Well, I know someone who is tube-fed was admitted for malnutrition. They had no tubes (or whatever they're called) for him and he had to wait 24 hours before it was sorted.

You see people like @Jo586 like to use every opportunity to inflict their view points on other people and relish the thought of taking their choices away. It’s hilarious “daft vegan diet” that daft diet that’s a lot healthier, and better for the environment when done properly and would be substantially cheaper for the NHS. Actually, it would be better if all food served in the Nhs was vegan on many levels.