Preparing to be in hospital

Whether it’s you as an adult, or supporting your child, staying in hospital can feel pretty daunting. Taking in with you familiar belongings, or activities to help pass the time, can be very comforting.

You will probably encounter lots of different staff on a busy ward whilst you are in hospital.

It is helpful to prepare a summary of key information about your, or your child’s health.

The summary should include:

• • a short summary of your, or your child’s, rare condition
  • what your or your child’s usual medications are (and take in a supply with you) and how often you or they take them
  • any particular ways of managing your or your child’s condition that you know work for you or them
  • contact details for any specialists you or your child are under

Supporting children, teenagers & young adults

Children’s hospitals have a lot of expertise and resources to help make a stay in hospital as easy as possible for both care-givers and children.

Sometimes, older teens and young adults are admitted onto adult wards. These can be difficult places for young people. Many adult wards understand this.

• • ask for your young person to be allocated a ‘key-worker/nurse’ whilst they are there for additional support
  • ask if visiting times can be flexible so you can visit more
  • check in with your young person regularly by phone

Being in hospital – what can help?

Raise any worries in advance, or as you are admitted

If there is anything specific that you are worried about like being in pain, dietary concerns, cultural or religious needs, toileting, or visiting times do let someone on the ward know. This includes if you are worried about how you, or your child, might cope emotionally. Staff can then help address your worries both in advance, and whilst you are there.

Hospital Food

Hospital food varies a lot! A particular diet might be needed for the management of your condition, but good nutrition is important for everyone. If you have particular dietary needs (cultural or medical) it can help to let the ward staff know this in advance. Some wards have small side kitchens where you can heat up your own food too. Ask if this is available and see if there are friends or relatives who could bring food in for you or your child.

Sleep and rest

Wards are busy places and often noisy, even at night. Noise-cancelling headphones, ear plugs and a sleep mask can all help. If you are finding it hard to sleep, let the ward staff know. They may be able to make suggestions to help you get some rest.

Clothing

Think about the sort of treatment you will be having and how this might impact the clothes you take. You might need clothing that is easy to get on or off in a particular way. If your child has particular items they like to wear then take these with you.

Label aids & personal items

If you take any personal items or aids with you like disability aids, gaming devices and toiletries label these in advance with your name in marker pen. Belongings can get mixed up or moved accidentally, or your bed moved elsewhere at short notice.

Passing the time

You might be kept quite ‘busy’ in hospital, or your energy focussed on recovering. However, there can be times that are boring, or you would welcome some distraction.

Consider:

• • a tablet (or phone) with pre-downloaded TV programmes, films, audio books, music or podcasts
  • books, magazines or puzzle books
  • games or apps on a phone/tablet

Going home

Even a few days in hospital can make engaging with daily life again quite challenging – however relieved you are to be home!

You might feel sore, out-of-routine and exhausted as well as recovering physically from any treatment or tests. Everyone needs time to recover – emotionally as well as physically – after being in hospital. You might feel more tired than you imagined for some time.

Be patient with yourself.

When you leave hospital, make sure you know:

• • contact details should you have any concerns about treatment side-effects, pain, wound-care, medications etc
  • what to expect in terms of recovery, and anything to expect or be aware of
  • when a follow-up appointment will be sent

NHS Inform has practical information for when you are being discharged from hospital.

Wellchild has information for when a child with complex needs is being discharged from hospital.

If things go wrong

Sometimes systems, care or communication does not work as well as it should. Sometimes things sadly go ‘wrong’, or mistakes get made.

If you feel able to, let a healthcare professional know as soon as possible what went wrong, or was unhelpful. Letting someone know what went wrong for you allows for the possibility of a different outcome in the future, and for you to have your experience respected and addressed.

If this does not help resolve your issues, talk to someone who can help you think through further options. This might be another healthcare professional you feel comfortable with like a community nurse, GP, physio or dietician.

Many hospitals have ‘Patient Advocacy and Liaison Services’ (PALS), their job is to help resolve difficulties and improve communication between patients, healthcare professionals, and systems of care.

You also have the right to make a complaint about any aspect of NHS care, treatment or service. You can find more information about this here.