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Tips for Parents whose Child is in Hospital

The following Tips for Parents (by parents!) is based on a list provided by Emma Speechley and Tina Smith, and supplemented to by other parents and contributors.

“Having ourselves had lengthy stays on the ward we hope these ideas may help other parents of newly diagnosed children and teenagers-we hope you find them useful.”

  • Bringing a pillowcase or fleece blanket from home for yourself and child makes the bed feel more familiar (though you may need to check your hospital’s infection control guidelines to find out about washing items brought from home).  It is important that you try to get enough rest when you are in hospital with your child, you need to look after yourself so that you are able to continue to look after your child
     
  • Bed pans - put your child’s name on a pile (4-6) when you arrive and keep by the bed as saves writing in the middle of the night.
     
  • Baby wipes are useful for freshening up however you need to wash hands with soap and water or alcohol gel for infection control.
     
  • Chemotherapy can affect your sense of smell so that some things that your children liked the smell of may now smell really bad to them. For example, some children hate the smell of the alcohol wipes used to clean the ends of the lines, try having a scarf or hanky smelling of whatever they now find to be a good smell, familiar perfume – (this may now not smell so good ) that they can hold over their nose.
     
  • A ’sharpie’ or marker pen is the easiest way of labelling food in the communal fridge food needs to be labelled with the date it was placed in the fridge, who it belongs to and used within the sell-by date, hospital infection control policies will mean that opened packages will not be able to be stored unless the date opened is on the package and they are stored appropriatly.  Remember it is important for you to eat and drink properly whilst your child is in hospital if you become ill you will not be able to stay on the ward as you will then become an infection risk to the children and young people on the ward.
     
  • Your child's sense of taste can be affected by the chemotherapy. Some foods that were favourites may no longer taste nice it can be hard to find out what are new likes and dislikes. Ice lollies can be more palatable than normal food during chemo.
     
  • Looking after yourself is really important try to get out at least once a day, for fresh air –even a few minutes will help your sanity.
     
  • Flip flops or croc-type shoes are great for the ward, comfortable, cool and quiet.
     
  • Chatting to other parents is great; however do respect their privacy, if you or they are having a rough time it’s great to know there’s a sympathetic face in the next door bay, or to make a cup of tea with. But do make sure to protect yourself at the same time, and don’t take on someone else’s problems. Sometimes you can have too much going on with the situation that you are in so it is ok to just look after yourself and your child you need to know what is best for you so whatever your decision it has to be what you feel is the right one for you and either way that will be the right one.
     
  • If you would like to be put in touch with other parents whose children have a similar diagnosis or who may live locally to you, ask a member of the local team who may be able to put you in contact, again respect their privacy. Siblings, partners and friends visiting are good for morale but please don’t let the noise level get too loud, your child may be ok but there are likely to be others feeling poorly and trying to sleep.
     
  • Be wary of food smells near the beds, not great for nauseous patients.
     
  • Resist the temptation to trawl the internet too much regarding your child’s condition, use only well-known, trustworthy web-sites, such as those of major UK charities and the NHS. Trust your own consultant, who has all the details and test results of your own child, they really do have your child’s best interests at heart and they are the people who know about the best treatment for your particular situation, they do not take decisions lightly and all patients are discussed in multi-disciplinary meetings, with several different doctors giving their opinions.
     
  • Car parking - your CLIC Sargent social worker should be able to help with an application for a blue badge, invaluable for parking with your child near the hospital for clinic visits, although this does usually take a long time to come through.
     
  • If you use the hospital car parks ask a member of the team if you might be entitled to any reductions on parking fees.
     
  • Cancer Research UK have a  scheme called ‘Little Star Awards’.  You just go on their website and can nominate your own child and they get certificates, t-shirt, goodies and TK Maxx vouchers.
     
  • ‘Make a Wish’ is one of a number of wish-granting organisations. Your child may have fun thinking of what they’d like to do!  The team can advise about how to apply, or about other similar organisations.
     
  • Ask for details of where you can find the nearest supermarket/shop/fast food outlet.
     
  • Ask for an explanation of any machine that your child might be linked to – is bleeping normal?  When do you need to alert a nurse? What signals an emergency?  Should you touch the machine?
     
  • Make sure you find out where the loos are, and check whether you can leave your child to go to the loo.
     
  • Other parents can be a huge source of useful information.  Ask another parent to show you where you can make a cup of tea/where to get a meal/where to find the nearest park.
     
  • If you find help from other parents useful, particularly in the first days after diagnosis, perhaps you could offer the same help to other parents. 
     
  • Keeping everyone informed of your child’s progress can be hard work. You might like to change your answer machine message to give a brief update that will be picked up by anyone phoning to enquire and saves you making endless phone calls. Using email or Facebook to update people means you can reach lots of people at once, saving you lots of repetition. 
     
  • Unexpected admissions do happen - usually in the middle of the night.  Each time you get home from a hospital stay repack your bag so that its ready just in case - include things in the bag for yourself as well as your child.  Have a plan on who will be able to care for other children family pets if you need to come back into hospital in an emergency.
     
  • Some useful items to bring from home include: phone charger, toiletries, books and magazines, brush or comb, diary or organiser, pen, child’s favourite toy and games, washing powder or liquid.
     
  • Make sure you have small change with you, its always handy for the hospital shop or other small purchases.
     
  • Aim to get off the ward for a short break each day – let a member of staff know how long you’ll be gone, and how to contact you if necessary.
     
  • Most children’s wards have a TV and video games available, and these can be a useful way for you and your child to build relationships with other families.
     
  • If your son/daughter is going to be on the ward for a few days let a friend know so that they can keep an eye on your property and if necessary collect any post.
     
  • Do you have any outstanding bills to pay? It may be possible to set these up online or check where the nearest bank/building society is to the hospital. You could arrange for a relative/friend to pay the bill on your behalf.
     
  • If you have a pay-as-you-go mobile phone, check where the nearest top up shop is.
     
  • Facilities vary between hospitals so washing your clothes in the hospital may not be possible - accept help from friends.
     
  • If you have any worries or questions, talk to a member of your child’s care team. It may be helpful to write down questions as they occur so you remember them.