For Patients & Parents

Your healthcare team will provide the best possible care for you or your loved one, and will do their best to address all your questions and concerns. But sometimes we just need to hear it from someone who’s going through a similar experience. Patient experiences tube feeding can be a source of real support. If you’re starting tube feeding, hearing from someone else who has been tube feeding for years could give the reassurance you need. If your child is tube feeding, getting practical advice from other parents on how to cope can pull you through tough times. And if you’re caring for someone close to you, discovering how other carers deal with the added stress can help you feel a lot less isolated.

Here, we offer tube feeding tips and advice from real people who are tube feeding or caring for someone who is being tube fed.

How can I cope with the decision to tube feed?

LISA’S STORY: LIVING WITH TUBE FEEDING
Don’t panic. You are not alone – organisations are there to help which can give you lots of information and support on how to cope. feeling overwhelmed is perfectly acceptable and natural when starting anything new. Fully understanding the reason why you’re going on tube feeding and the implications of this are really important in helping you cope and calm your nerves during this period

JOHN’S STORY: CARING FOR HIS SON
Try not to be too disheartened. It’s difficult, but like any problem in life, you somehow manage to find your way and you will be resilient. It won’t be as bad as you imagine in terms of the practicalities of it. You may think you’re getting into a regimented world but there is flexibility around it. It does get easier – you’ll get better at it and will become the expert. You’ll be teaching other people in six months time!

MICHELLE’S STORY: CARING FOR HER DAUGHTER
For parents, try to remember three things: it’s not your fault, tube feeding is a medical procedure, and it will be time consuming. The doctor might see it as a simple procedure, but when it’s your child it’s hard emotionally. Also, be patient with yourself. It took me three months to learn how to put a tube in. Two visits to Accident and Emergency Department helped me get over it – each visit took three hours and I didn’t want to deal with that everyday, so I dealt with it myself. Now I feel like I know it better than them.

How do I know if this is the best option for me or my loved one?

LISA’S STORY: LIVING WITH TUBE FEEDING
You also need to be confident enough to probe and ask “why?” If you don’t understand, don’t be afraid to ask again. You only know your options if you ask. And if you find information isn’t forthcoming, don’t give up, keep on asking and you’ll eventually get your answer.

KATIE’S STORY: CARING FOR HER DAUGHTER
My tube-fed daughter is one of twins. She is disabled and has special needs. She was in hospital with chest infections and losing weight and I was advised to give butter with every meal. But then I changed her doctor and was recommended to start tube feeding. Now my daughter has the perfect diet, … she’s a lot healthier today. If she’s ill, it’s so easy to give her rehydration therapy through the stomach. With my non-tube fed twin, I’m always worrying about what she is and isn’t eating!

How can I cope with going home?

PHILIPPA’S STORY: LIVING WITH TUBE FEEDING
Be sure to set realistic targets. You will find ways of doing things – it’s small steps. I didn’t leave the house for four days when I got home. My first venture out was to walk down the street with my rucksack on my back (I was on continuous feeding then) to the corner shop just to get a pint of milk for a friend coming around for tea. It was totally liberating to go out on my own. Friends of mine took me to the train one night as they knew I was scared of travelling. I was scared of someone knocking me. This was three weeks after I’d come out of hospital. We walked to the station, went two stops and came back just to prove I could do it.

MARILYN’S STORY: CARING FOR HER SON
Before you leave hospital, make sure you know what amount of stock you’ll be getting and how the stock will work – what’s the procedure? Try to get those things organised even before you go home. Organise the delivery while your child is still in care, and try to figure out the procedure ahead of time. Ask questions and make sure you take notes of everything that is being said because you tend to forget so much of it.

JOHN’S STORY: CARING FOR HIS SON
The best way to learn is slowly. After time, you’ll be surprised at how much more you know than in those first few days. It’s like riding a bike – someone else can’t tell you how to ride a bike, you just need to go and learn it. And remember, it’s okay if it’s not perfect, like if you run out of feed, don’t have the full dose or have too much.

How will tube feeding be different at home compared to in hospital?

MICHELLE’S STORY: CARING FOR HER DAUGHTER
I found it easier at home. When in hospital, I felt like everyone was breathing down my neck and like I was being scrutinised. At home, you trust yourself. But it’s also once you’re home when you realise how much your life changes. I realised only at home that I’d never have a lie in again!  In reality, you can change your routine, but it’s still dependent on time and volume.  You just have to be really organised. Like when my older daughter wants to do a club, I have to shuffle how the feeding will work around her schedule.

Will I feel hungry? Will I miss eating?

JAMIE’S STORY: LIVING WITH TUBE FEEDING
In hospital, I didn’t feel hungry. But when I got home and saw people sit down with a meal, I felt really hungry. If I suck on a lolly pop, that can help.

PHILIPPA’S STORY: LIVING WITH TUBE FEEDING
I have on occasions chewed and spit at social events. I find it easier to go to restaurants with people that I trust. My boyfriend is in the military and he’s invited me to a four-course set meal. I know I’ll have to sit down and explain it to everyone, and I don’t really want to. But I know he will look after me. When I’m with my family, I have a bowl of soup that is totally liquid and make it last as long as their meal lasts. Sometimes I also put a cup of tea in front of me just to feel a bit more normal! I cook for my other half all the time – I don’t taste it, I just smell it and get him to taste it.

How can I make taking medications easier?

MARILYN’S STORY: CARING FOR HER SON
Ask for liquid solutions rather than tablets because tablets take ages to crush up. You also have to be more careful with crushing a tablet so it doesn’t block the tube. With liquid solutions, ask for sugar-free (non-syrupy) medications because otherwise they can stick to the tube. Have a mortar and pestle at home to crush tablets.

How will my friends and family react?

PHILIPPA’S STORY: LIVING WITH TUBE FEEDING
Not all your friends will understand, and then some people will surprise you. Take it easy with your family and friends – although it’s a massive adjustment for you, you’re the one living with it. Personally, I try and make light of it. People think it’s a last resort so are scared by it, but they get used to it. A parent’s job is to be the one who looks after their child, so it can be tough on your parents. My mum just wants to help, help, help. She wanted to put me in a nursing home to have me wrapped up in cotton wool! My mum grieved and then bought me a food processer as she thought I could make soups. It took her a while to accept that I wouldn’t be able to eat again. I was with a friend out shopping and she said she was thirsty. I realised it was mid-afternoon and we hadn’t had lunch – she hadn’t wanted to offend me by stopping to eat. Now I have a separate breakfast, lunch and dinner time flush to create a normal routine and to be able to say, “It’s lunch time!”

LAURA’S STORY: CARING FOR HER SON
My family was shocked when they saw the tubes and heard the electric pump. I think people see the tube and think it’s something terminal. For his Christening invitations, I actually used a photo of my son where you can see his tube. Things like that break down the barrier of awkwardness. Giving your tube fed child’s siblings one to play with helps bring down their fear.

How do I deal with dating?

PHILIPPA’S STORY: LIVING WITH TUBE FEEDING
I was single when I came out of hospital and I wondered if I was ever going to meet anyone who can understand. But I met my boyfriend since. The first thing he asked was if he could take me out to dinner, and I had to reply that I couldn’t eat anything but I’d like to go out for a drink. He joked that I was a cheap date, but organised a day motor racing instead.

What if I have to feed while I’m out in public?

JAMIE’S STORY: LIVING WITH TUBE FEEDING
Know your environment, work out your timings and try to know what facilities are available ahead of time. Allow yourself time. Don’t go too far your first time out, or go out somewhere initially that’s a family environment.

PHILLIPA’S STORY: LIVING WITH TUBE FEEDING
If you’re going out, always give yourself an extra bit of time in case your button pops or you mark your top. I always carry my ‘comfort clothes’ with me. For bolus feeding in public, I always have a scarf with me or a baby muslin which I put on my lap so I can do the feed under my clothes. I can connect and do it quite discretely. I also always have sterile wipes with me. Personally, I don’t like doing it in front of other people, but everyone is different.

How can I stay positive?

LISA’S STORY: LIVING WITH TUBE FEEDING
Tube feeding has saved my life. Think of it as allowing you to retain as much of your independence as possible. Accommodating a tube can be daunting and the fact that you can’t eat anymore can be tough – but at the end of the day, I’m grateful for the fact that it keeps me alive. Keeping your humour alive and realising you’ll have your good and your bad days is important. JOHN’S

STORY: CARING FOR HIS SON
Nobody can tell you ‘this is what you do to cope well’. It might not be an amazing time, and things are going to be frustrating on an almost daily basis. But don’t let it consume you, and always remind yourself that there’s another world out there. You just need to make this the new norm. You’ll have less time to play squash or football and you might not sleep normally again, but you do get used to it. The trick is to not let it take over your life. Having a child like this can mean lots of good things too. It’s like having a plane being diverted from Rome to Holland. There’s still a lot of nice things in Holland, it’s just not what you were expecting. Milestones that your child reaches are much more personal, you meet people you’d never have met otherwise and you’ll go places you’d not otherwise visit.

How can I enrich my child’s life?

MARILYN’S STORY: CARING FOR HER SON
I bought a caravan and converted it for my son, so we take it to the seaside. I could see his friends shying away from him, so started to take him to a place in the caravan where nobody knew who he used to be, but instead just know him for who he is now. It’s a happier situation being around people who only know the ‘now’ rather than the ‘before’

How can I make tube feeding more ‘normal’ for the person I’m caring for?

MARILYN’S STORY: CARING FOR HER SON
I usually feed my son overnight and a litre of water during the day, which is much easier for both of us. That way, we don’t have to keep stopping to feed during the day. I’ll bring my son into meal time for holidays and my other children will take meals into his room to eat with him. Sometimes I announce to him, “Oh, it’s fish and chips tonight!”.

As a parent, am I going to be ‘stuck at home’ for the rest of my life?

JOHN’S STORY: CARING FOR HIS SON
I am jealous of parents who have it easier and sometimes feel resentful. You do lose an element of ‘normality’ and don’t always enjoy things as much as you would if you didn’t have to provide such intensive care. But life has to go on. It’s the ‘new norm’ for us, so we just get out there and don’t worry about anyone else. I feel proud for staying positive. We find it healthy to go out as often as possible with our son. And the more you do it, the easier it becomes. It just takes more planning. With a bit of organization, anything is possible. Have a checklist of things you need before going out with your child. This should include a spare of everything – have bag with spare tube, lubricant, etc. Be regimental about that stuff so you don’t end up in situations where it becomes a panic.

LISA’S STORY: LIVING WITH TUBE FEEDING
It’s all about striking a healthy balance between doing things you want to and what your tube allows you to do. When you’re ready, make sure you still attend social events even if they’re based around food. It’s important to remember not to be embarrassed about not eating.

What’s it going to be like travelling?

JOHN’S STORY: CARING FOR HIS SON
You’ll be surprised how accommodating people are, no matter where you are. We’ve travelled with our son all around the U.S., St. Vincent, Turkey, France, Ascot, Germany and Mauritius. When we’ve lost or broken something, it wasn’t that hard to get it replaced no matter where we were. It’s amazing how many people have been willing to help us out because we’re with someone who needs it. There’s always a hospital, and even hotels can provide help. We do plan well in advance though, to make sure our son’s feed is with the airline and things like that. But the rest of the holiday is like any other. We feel like we can do most things, as long as there’s electricity!

ABI’S STORY: CARING FOR HER SON
I find we get a lot of assistance at every airport. You can get someone to help you at the airport; you can have wheelchair assistance and priority boarding. You can get a letter from your doctor explaining that you have prescription milk and syringes; this gives you an extra allowance for your luggage and what you can take through security. Leave early! Always leave more time than you think you’ll need. And bring extras of everything. Familiarise yourself with where the nearest hospital is when you get to your destination.

Where can I go for support?

ASHLING’S STORY: CARING FOR HER DAUGHTER
Although it’s hard to find the energy at the beginning, you need to have some fight in you. For knowledge of your local legislation and guidelines, for answers to your questions, for referrals. No one else will advocate for your child if you don’t. Ask about social workers, forums and psychologists. Blogs of other parents can be helpful to see where they are on their journeys. Your community nurse is really important for referring and putting you in touch with different people and the right therapists.

How can I be best prepared for whatever comes our way?

ABI’S STORY: CARING FOR HER SON
With time, I’ve learned some practical tips that might benefit other parents heading out into the world with their tube-fed child:

  1. Charge the pump! The battery should last for a full day.
  2. Make sure you always have a spare set of everything. I even keep some lubrication in the car – always think “what if?”
  3. Allow yourself to be creative about how you hang the feed. Improvise! Rucksacks work on the back of wheelchairs or I’ve used hangers in hotel rooms.
  4. Make sure the tube is always secure on your child so they or their friends and siblings don’t pull them out by accident. Always securely tie them.
  5. Create a communication passport for your child that describes who he is, what he likes, his journey, his condition or illness, how he feeds and what to do if there’s a problem. This is particularly helpful if you’re not a very verbal person.
How can I explain tube feeding to my child? What about to his or her siblings?

KATIE’S STORY: CARING FOR HER DAUGHTERS
This depends on the age of your child. If your child is fed from an early age, you don’t have to explain anything. But if older, or if you’re explaining to siblings, you can explain like this: “You need to be fed through this tube as your tummy isn’t working the way ours does, but apart from that you are exactly the same as the rest of your family.” Explain what feels natural to you and your family – the worse thing to do is not tell them anything and have your child or other children left wondering. Straight talking, honesty and using simple language that the children will understand will make it easier.