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.

'Spaghetti' bolognaise, as served up for dinner during my current hospital stay. Jillian McNulty Jillian McNulty

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.

• (Read more here on how you can support a major Noteworthy project into the state of hospital food in Ireland and whether patients can expect improvements.)

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:

One of my recent dinners from the specials menu, with substitutions that I can't eat. Jillian McNulty Jillian McNulty

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>