Sheffield dad goes extra mile to experience patients' struggles

The 38-year-old is a home enteral feed dietitian for Sheffield Teaching Hospitals, supporting patients - some of home have motor neurone disease - with tube feeding.

His grandfather Fred White died of MND, and so Sean wanted to boost the South Yorkshire branch of the Motor Neurone Disease Association by raising funds through running the Paris Marathon.

But he also took the unusually drastic step of having a naso-gastric tube fitted while stopping all oral diet and fluids for one week.

Sean, of Lodge Moor, kept a diary to chart his progress and what it was like to deal with the tube while completing everyday tasks such as shaving, family meals and jogging.

And the experience not only resulted in him raising £1,450 for the cause, but also gained an professional insight into what relying on the tube is like for many patients.

“It was a bit of an extreme challenge but I would encourage everyone who works in supporting people on tube feeding to have a go”, said father-of-two Sean.

“I only know a little bit now of what it is like to have the tube for a short period of time, not having a condition like motor neurone disease, but even that brief experience has shown me so many practical things that matter which I wouldn’t have thought of.

“The amount of money raised was amazing as well - my target was only £200.”

While Sean didn’t find hunger to be a problem while using the tube, he did struggle with the social restrictions.

Having the tube passed through his nose and into his stomach was also an unpleasant experience, and there were difficulties in getting the liquid from a syringe into his system as he had to hold the feed bag in the air for half an hour.

Blended chicken dinners, changes in bowel movements and learning to feed in public were also covered in the warts-and-all diary.

Sean added: “It wasn’t the most pleasant experience having the tube inserted, I had a proper heave when it was going down. When it was first in it was really uncomfortable but I would say by the end of the week I had forgotten it was there.

“Now it is out I keep going to move it behind my ear and it is not there!

“What I was surprised about was that I wasn’t hungry at all - I didn’t miss eating but I missed family mealtimes.

“It was my son’s sixth birthday which I wasn’t able to join in with the cake, it was the same at a friends’ house when everyone else was having a beer and I couldn’t.

“You can also tell people are taking a second look at you when you have the tube in - although I was looking for that.”

Motor Neurone Disease is a progressive condition that attacks nerves in the brain and spine. It can affect how people walk, talk, eat and breathe.

To sponsor Sean visit https://www.justgiving.com/seanwhite77.

Sean’s Facebook diary

Day one - Tube is down. Feels weird. Twitches at back of my throat every time I swallow.

Day two - Just fed myself in Tesco’s car park. Got some very strange looks through the windscreen.

What did I not expect?

1. The feeling of the feed going down the tube is weird. Feels like I am swallowing a cold liquid and panicked me the first time as thought tube was dislodged.

2. How hard it is to syringe Fortisip down the tube.

3. The amount I salivate when a feed or water bolus is being taken down the tube

Day five - While out running I was thinking how I was doing many things that I take for granted such as being able to use my legs, breathe normally, and talk.

These are all things that many people living with MND can no longer do like they used to. It is a terrible disease and the money raised will be used to support people with MND and their families.

Donations have passed £1,000 which is amazing and thank you to everyone who has sponsored me so far.

First run with NG tube in. Should have stopped feeding for longer period before setting off. Stomach felt like a washing machine.

Keep forgetting I am attached to a pump. Lucky I have the tube well strapped down otherwise the tube would have been out by now.

Lesson learnt: don’t chuck the rucksack on the floor as I walk in the front door. The giving set does not reach that far. Near miss for tube displacement number five. Also got it caught on cupboard door and walked away attached numerous times.

Day six - I have tried some liquidised, pureed and soft diet tonight. Felt guilty as I know many people with MND are not able to eat or drink.

The NG tube was pulled down with each swallow making it very tight and uncomfortable on my nostril and top of my nasal passage.

It was also not that easy to swallow the food with the tube there, leaving a feeling of some food remaining at the back of my throat, that cleared with a drink. This may make people less inclined to eat when moving from NG feeding to oral diet if this is how it feels.

Day eight - The tube is out. Feel like I have had a body part removed. Keep trying to reposition an imaginary tube behind my ear - I have a phantom NG tube.

It has been such an interesting week and something I wish I had done a long time ago.

I would strongly encourage any health professional supporting patients on enteral feeding to have a tube placed, even for just a few days as it gives a real insight into some of the practical difficulties patients face day in, day out.