It should go without saying that families are under enormous strain when a child is taken to hospital.1 It’s at this time that they begin to cope with what has happened and it’s important that parents remember to look after themselves at this difficult time.2 Read our section on ‘looking after yourselves’.
Stages of the hospital process
We’ve set out the different stages of the hospital process below. But it's important to remember that not all children will go through each stage.
Accident and emergency
This is sometimes called ‘casualty’ or ‘A&E’. It is where patients are taken in a medical emergency. They are then prioritised and seen in order of their need. This is called ‘triage’.
Transfer to a specialist centre
Sometimes children are taken directly to a specialist neurology centre rather than accident and emergency. This is because the staff have decided a child would benefit from this kind of specialist care. The decision to move a child to a specialist centre might be taken later on in the process. They might be assessed at the hospital and then transferred.
When they explained what had happened it felt like we were in a film or a TV programme. It just all felt very unreal." A parent's experience
Intensive care/critical care
This unit is for very ill patients and has a relatively small number of beds. It is sometimes called a high dependency unit. It will be staffed by specialists, and the ratio of staff to patients will usually be higher. If a/your child is in a specialist centre, this unit might be called neurointensive care. Some hospitals might have a PICU – a paediatric intensive care unit. This means it is a dedicated unit for children.
The ward/children’s ward
If a child is well enough they may go to a ward or a children’s ward. Here they will be monitored while assessments are begun and plans made for future treatment. There may be some rehabilitation at this stage (see below).3
One of the definitions for ‘rehabilitate’ in The Oxford English Dictionary is: 'to restore someone back to health through training and therapy'.4 The aim of rehabilitation is to get this process in motion and give a child the very best opportunity to get back some of the skills they may have lost.5 Some hospitals may provide some form of rehabilitation (physiotherapy, for example).This is sometimes called ‘inpatient rehabilitation’.
Discharge from hospital
If a child is able to return home, leaving the hospital is a big step.
There is a crucial meeting that should take place between the family and the healthcare professionals looking after the child. This is called a discharge planning meeting.6
The aim is to make sure a/your child has a ‘care plan’. This is a plan of action to set out what kind of care a/your child needs and who will provide it.7
The assessments and evaluations you may have seen taking place all contribute to this care plan. While most families will be anxious to get their child home, it's important that they make the most of this opportunity to ask questions.
The plan will set out what kind of services in the community your child will have access to so parents must be satisfied about what has been agreed.8 Parents should always be invited to these meetings. Some have found it helpful to invite a friend or family member as a ‘second pair of ears’.
Professionals won’t mind you taking notes to keep a record of the meeting and what was discussed. Parents can also request a set of meeting notes, which should be sent to them afterwards.
The family GP should also be notified about the discharge from hospital. It may be useful for parents to invite someone from their child’s school to the meeting so they know their part in the scheme of it all. This may be the Special Educational Needs Co-ordinator or a senior member of staff like the Head.
Don't be concerned about asking questions. Whether they mean to or not, healthcare professionals get so used to jargon they may not realise they’re using it. It's important that you feel you understand what has been agreed on and that you are satisfied.
Children may be referred to some form of rehabilitation service. This might be:
- A specialist rehabilitation centre.
- Community services – a specialist from an organisation or your local authority may provide therapy in the home, at a local centre or even at school.
- The community clinical team may have decided your child is able to return home without access to rehabilitation services.
There is nothing wrong in seeking a second opinion if you feel your child would benefit from these kind of services. Sometimes this is called a ‘further opinion’. If this second opinion is different from what was said originally, ask doctors to explain the situation and the options available to you.