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WHEN YOU HAVE cystic fibrosis, nutrition can be just as important as daily medications. CF patients need a high-calorie, high-fat, nutritious diet. Good food IS also our medicine.
I’m currently running into my fifth week in hospital. In those five weeks, I feel like I’ve been given one meal that I personally found edible.
By the time food gets to my room, it’s lukewarm; breaded fish for example isn’t very warm; it’s soggy and rubbery. Mash is lumpy and disgusting. Grease is lying under the pasta and bolognese sauce. It’s bad enough being in the hospital and starving but then to be handed your meal and instantly put off because of its presentation; it feels uncaring.
This is bad enough for anyone staying in hospital but, as with patients with some other specific conditions, what you eat as someone with CF can contribute hugely to your chances of staying well, or even of survival.
People with CF are often advised to load up on calories – sometimes double the daily intake of an average person in your age/gender/weight category – just to maintain weight. We use up so much energy to constantly fight off infections and breathe with damaged lungs and all of the other challenges associated with our condition that our bodies have to see off.
A working group in the UK which looked at the nutritional management of cystic fibrosis concluded that “poor growth and malnutrition contribute to increased mortality and morbidity in CF and have a long-term impact on lung function”. It shows that a high-fat, high-energy diet has been recognised as standard nutritional management of CF for the past 25 years, and that approach leads to improved survival rates.
“Energy requirements are now quoted to be 110-200 percent of those required by healthy individuals of the same age and gender”.
It is hard to keep that intake up at the moment. My current admission to hospital has been particularly difficult with the Covid crisis; we are not allowed leave our rooms, all visiting is cancelled. Usually, I can leave during the day to get food from restaurants nearby to supplement my intake but that’s not possible this time. Instead, I’m trying to curb my hunger with takeaways if I can get them.
CF patients are lucky in one way as we get a choice of what we want each day but the menus are repeated a lot, except for one or two daily specials. But it’s not as big an advantage as it sounds as you don’t always get what you order.
To give an example of one substitution which left me with very little on the plate that I could eat, look at this picture:
As you can see on the order form, I had asked for French beans, and got peas and potatoes instead, along with a sea of parsley sauce. This isn’t a taste preference issue; I can’t eat potatoes because of problems with my kidneys (I am waiting on a kidney transplant).
I will admit I can be fussy; I love food, consider myself a foodie. When I’m already unwell and need the plate in front of me to be appealing in order to get those calories in, the food I am served in hospital can reduce me to tears.
A lot of the time I think I might be over-exaggerating so I show pictures of my food to family and friends, only for them to be horrified. This is a sample of the meals I have received in my current stint in hospital:
Things need to change. I know of CF units in the UK that have their own dedicated chef on their ward and they get nutritious food that looks appealing, so everyone is happy. I really think the HSE needs to look at hospitals and the food they serve.
I know it is hard to keep everyone happy but it’s worth at least trying; the amount of waste when food isn’t eaten is unbelievable. If food was prepared and presented properly, there would be little waste. It would be more cost-efficient and beneficial to both the patients and hospitals.
Just over a year ago, Health Minister Simon Harris launched a new Food, Nutrition and Hydration Policy for adults in acute hospitals to set “nutrition standards for hospital menus to improve nutritional care”.
The implementation of that plan, earmarked for 2020, is likely to be impacted by the coronavirus crisis.
But when he took over as Health Minister, he said that “improving hospital food” would be one of his first priorities”. That was four years ago.
I’m calling on Minister Harris to make changes especially for those of us who spend weeks or months in hospital. Our lives can depend on it.
Editor’s note: As Jillian is currently a patient at St Vincent’s University Hospital in Dublin, we shared her experiences with the hospital.
This is their response:
“The SVUH team of dietitians works as part of the healthcare team to provide nutritional care that supports patient recovery. Our hospital menus are designed to provide patients with a varied and balanced diet and we prioritise food safety, quality and overall nutritional value. We cater for patients with food allergies and specific dietary requirements.
“Patients with Cystic Fibrosis (CF) have complex nutritional needs and are regularly seen by a specialist dietitian to optimise nutritional care during their hospital stay. Patients with CF have access to extended meal and snack options on the hospital menu which aim to meet the wide variety and complex nature of their nutritional requirements. Patients with CF are also offered an additional meal daily that is served at their convenience after standard hospital meal times.
“Covid-19 has restricted inpatient movements and limited external visitors to the hospital, has made inpatient stays more challenging for all patients, but particularly those with chronic conditions, such as CF.”
Jillian McNulty is an advocate and campaigner for the rights of people with cystic fibrosis.
NIL BY MOUTH Investigation
Poor quality hospital food has been recognised by national HSE inpatient surveys as a major issue and half of all hospital food served to patients is thrown away.
The Noteworthy team want to do an in-depth investigation into when long-mooted changes to food will be implemented – and whether this will bring the country in line with best nutritional practice in a clinical setting.
Here’s how to help support this proposal>
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What golfing buddy of a TD owns the contract to make hospital food?
Okay, even my cooking is better than those sights! It’s sad, when it’s the highlight of the patient’s day. Best of luck with your transplant, Jillian and may it all go smoothly – so you can escape to decent food.
@Fiona Fitzgerald: some of that food isn’t bad looking.
@Mark Johnson: seriously? It’s also worth noting that hospital food is very lacking in flavour and is never hot.
@Mark Johnson: I wouldn’t feed that to my dog.
@Barbara Daly Ledwidge: it’d be too good to give a dog
@Mark Johnson: More than half of those pics match the description of the dish if it were to be puked back up. You’ve either got a weird food fetish or are simply just a sad mommy’s boy troll. Not sure which would be worse tbh. Lol
Feeding that stuff to sick people. Thats appalling. Patients need nourishment to recover.
I work in the HSE and for many years got free food from our canteen. It got so bad we all just stopped eating it. Then I had the misfortune to spend 4 days in hospital 2 weeks ago. Horrific the food was fortunately I couldn’t really eat much anyway.
That statement from the hospital is laughable. They don’t even try to lie and say that the photos are of a small number of meals that may sometimes fall below their standards.
Their statement outright says that they “provide patients with a varied and balanced diet and we prioritise food safety, quality and overall nutritional value”. Yet we then see photos like this and it sounds like they’re standing by them.
Our health service costs many billions every year. They then try to scrimp and save money by serving crap food to patients in hospital. It’s a false economy. Despite this short-term saving, one of the cheapest ways to have a healthy population is to have us eating right. Good food is not expensive.
Clearly (and rightfully) the State is unable to force us to eat well when we are at home. But you would think they could use the opportunities in hospital to show people what they should be eating. No one should be eating like this. If we all did, there would be untold consequences. It’s a bit of a mental stretch to think that the health service runs healthy eating campaigns, and then wheels out this rubbish to those who need good nutrition the most.
Shameful, and overall, it’s just going to cost more in the long run, not less.
@Donncha: Great post! Decent food is relatively cheap way of making ill patients feel much better.
The Rotunda has an excellent chef and the good is really good. How come they can serve nutritious tasty food there but not in other hospitals
@clairebear: same in holles street food . Coombe was not great at all to put it nicely but care excellent
@clairebear: I agree. I was a patient in Mater hospital a few years ago and didn’t eat anything other than toast in the morning and digestive biscuits with the cup of tea the food was that horrendous. Recently a patient in Lourdes in Drogheda and the food fantastic. And snacks at different times ! Never felt so spoilt apart from being sick !!
@clairebear: When I was a patient in Mullingar general hospital, the food was excellent!
BTW Jillian I feel sick just looking at that food. I don’t recognise what some of it is supposed to be. It’s just slop. Hope you’re feeling better.
Yuck, yuck and double yuck.
Like everything in the hospitals it’s down to budget. I don’t honestly believe the chefs want to cook poor food but this is what you get when cooking in bulk on a small budget.
€2 a meal in some cases(HSE says €8/9), and remember the costs include the salaries of those making it not just the food.
@Bluechip78: I can cook a better meal than this for €2 any day of the week, and I’m not buying in bulk.
Just don’t get ill and you will be punished here. I’m glad that she knew about the potatoes and hasn’t touched them. Imagine she would have been confused by it.
However, it’s up to Simon Harris to fix. So good luck with that.
I wish the author a fast recovery.
Pretty crap-looking “food”.
Yes, it’s sad enough that she’s not allowed any spuds, without having anything to look forward to on her plate.
I had to spend 4 days in hospital due to infection in gallbladder and wasn’t allowed eat or drink until I had a scan so was on a drip to kerp fluids up however it took 4 days for a space to come up for the scan which was a joke in its self but eventually had it at 10 oc on 4 th day great I thought I’ll be able to eat now but nope there was no one to check scan till 6.30 that evening so put back on drip for day food came and went to everyone else on ward when the results were finally back I was taken of drip and asked at 7.30 would I like something to eat and was offered either a cheese sandwich or a ham sandwich oh the excitement a cup tea and ham sandwich… Except the sandwich when it came was actually have frozen and tea lukewarm so that was end of that anyway next morning doctor arrived at 7.30 in morning and told me I could go home and guess what by time I left at 9oc breakfast hadn’t arrived so for total stay never had a morsel of food just glucose drip and antibiotics, to add insult to injury couple of days later got a letter from the nutritionist o say sorry she missed me as would like to discuss diet suitable for gallbladder……
@nelliekel: love punctuation!
I stayed in holles street when I had my child and the food was delicious. How come some hospitals can do good food and others can’t.
The absolute best is battered fish every friday in the canteen for everyone. Surely one of the most culturally diverse environments and the HSE cater only for the irish granny catholics. Its virtually fish paste in a soggy batter. Most of it goes back and is disposed. Sheer waste.
@Pat Ryan: was in St. Luke’s Kilkenny. Food was 1950′s Ireland Cuisine. Don’t think coffee exists in their universe. Third world standards.
They shouldn’t be feeding garbage,how does that help the immune system??
An excellent informative post. I spent 3 weeks in hospital last year recovering from a transplant operation. The food was horrendous. It was served in stale silver covers, looked tepid and tasted terrible. It certainly affected my mood after being subject to it for 3 days plus. You can serve decent food on a budget so I don’t buy that it’s a cost issue. It got so bad for me that one day my wife brought in a 12 inch subway sandwich and I can still remember the excitement at eating something normal …
I’ve encountered many people who have worked in that hospital (student nurses & doctors, HCA’s, ambulance staff) and I’ve yet to hear one positive about the place, so this article, unfortunately, doesn’t surprise me. I’ve worked in a few facilities myself and the standard of hospital food has been top notch in most of them.
A radical overhaul is badly needed, considering the facilities available on the same grounds in the private clinic.
You would really imagine that a hospital would be a shining example of healthy nutritious food!
I spent 2 weeks in The Mater public hospital in 2018 and the food was excellent.
Seems not a lot has changed since the late 60′s when I was a patient with a very serious condition on numerous occasions in Crumlin Hospital and the utter disgusting food that was served up then. I always remember the nurses saying if you don’t eat up you wont get well and go home, and while essentially that was true, it really worried me….my lovely mum (RIP) used to bring me in edible stuff, oh and that was nothing off the culinary scale at the time.
My thoughts on hospital food is varied . When i was young i spent alot of time in and out of the Lourdes hospital and the smell of hospital food afterwards turned my stomach to this day . Present day and last week i was involved in a motorbike RTA and broke my wrist and arm . The thought of going into hospital during the Coved19 pandemic filled me with dread . I was taken to Queens hospital romford for X rays and a plaster then i went home and was referred to King Georges goodmayes . King Georges Trauma section is open but the main Hospital is closed due to Coved 19 . Had my op on wednesday and the care and attension was fantastic . The food was brilliant and i can’t fault any of it . Normally people complain about the NHS food . When i was leaving i bumped into a secrurity guard and he told me that the trauma hospital was a private hospital paid for by the NHS ? No wonder the food was so good as they spend alot more money per patient than the NHS do . So the lesson is if they spent a bit more on the food the quality would improve vastly
Not surprised patients get even sicker when they get served slop like that! We need to change attitudes and educate people about proper nutrition and it seems we need to include hospitals in that. Lets look at hospital food in Japan and Greece, countries where longevity is the norm and rates of obesity, cancer, diabetes and cardiovascular issues are low, if not non-existent.
Stop complaining at least you got a plate and you don’t have to wash up. Think of others !
Self is not an answer when others starve.
@James Keogh: That is, quite frankly, the greatest load of böllix I think I have ever read.
Well done.
@Link: Typical “I’m ALL RIGHT JACK” attitude, there is a World outside this little island and people including children are starving, perhaps that is in your little head a “Pile of Bollix”
Get real and look at the Big Picture.
@James Keogh: so the baseline is starving is it? Anything more than that and we’re lucky?!
@James Keogh: I am looking at the big picture, and I fail to see how a hospitals failure to look after one of the most basic requirements for good health, ie nutrition, especially in the case of a cf patient for one of its patients can be justified simply because there are other issues in the world. This article is about the experience of an individual in an Irish hospital, there was not a hint of “I’m alright Jack” about what I wrote. I stand by every word.
@James Keogh: If someone can’t eat potatoes due to a medical condition and a hospital is serving them to that person, then something is wrong.
If someone needs due to medical reasons a higher calorie count a hospital should need cater to it. (The explanation of the author in relation to CF would make sense)
We live in a very rich country. Our hospitals should be sufficiently equipped or prepared to heal people or work toward a recovery. We don’t have to set our targets lower than that.
@Orpuk Jones: Context not stupidity please
@Link: I presume you sampled the food, if not stop commenting.
@James Keogh: Didn’t need to sample it, I read the article. You really are doubling down and trying to outdo yourself in the nonsense stakes, aren’t you?
@Link: Funny I don’t believe everything I read, and a small tip don’t read Trumps tweets, you just might believe them too.Stay Safe.
@James Keogh: So you think the author of the piece is lying and the reports from other people in the comments sections about the food are lies too.
@Gary Kearney: Possibly exaggerated, Opinion is everything and there are two sides to every story. We have one side in the Public Domain, what is the other ? ?
@James Keogh: The reply from the hospital, perhaps?
@Link: YES !
Well, the food hasn’t really changed in the 6 years since I spent my own 5 weeks as a guest in SVUH.
What hasn’t changed either is the canned response to complaints about food. I’m just after rereading an email I got back after putting photos of dishes I was served on the desk of Dr. Varadkar, and sections of it are almost verbatim.
Since hospitals handed over catering and cleaning to private sector, standards have dropped. I personally witnessed 3 cleaners come into my mother’s (isolated) room separately to clean: one to wipe surfaces, one to wipe floors, one to clean toilet (badly). As for meals, the standard is very poor and hardly nutritious. I believe it makes more sense practically and economically to recruit your own cleaning staff and kitchen staff and keep it in-house.
I had both of my children in hospitals in the States but since moving to Ireland I have been in the hospital overnight here also. Every time I have asked my spouse to bring me food from the “outside world” and either he – or my mother, funny enough – would have eaten the hospital food. I know I am a picky eater but I am not a fan of institutionalised cooking. Not sure why my mother always liked hospital food but at least someone ate it!
Those food pictures look terrible.
I was in the Rotunda for 5 days on my first and q0 days on my second so I went through the whole menu! I can genuinely say the food was plentiful and delicious. There was a small kitchen beside my room where you could go and make snacks. They had a well stocked fridge with cheese,crackers, fruit and chocolate. One of the desserts was bakewell tart and it was so fresh!
Maybe maternity hospitals just take more care with the food?
I remember being in OLOL fir a few days and they served “stew” with boiled potatoes. The potatoes were crispy and the stew was indescribable.
I feel so sorry for anyone staying there long term.
Totally agree with this lady, I’ve seen the “offerings” served to my mother over many many years in St Vincents hospital and it’s beyond appalling and inedible. Unacceptable and needs serious overhaul. Dieticians there just ticking boxes. Even food offered for sale on ground floor is appalling.
Totally agree with this lady, I’ve seen the “offerings” served to my mother over many many years in St Vincents hospital and it’s beyond appalling and inedible. Unacceptable and needs serious overhaul. Dieticians there just ticking boxes. Even food offered for sale on ground floor is pathetic.
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