hospitals

If your child has a disability or an ongoing health condition, they may be regular visitors to their local hospital.

No-one expects hospital visits or stays to be fun but everything you can do to share your own knowledge and help communications will make things easier for your child.

Health Passports
A health or hospital passport is a document specifically for disabled children or children with learning disabilities that contains all the vital information about them that a healthcare worker might need to know.

Though the passports may differ slightly from area to area, they help reflect the very unique nature of your child and give health staff an instant snapshot and a better understanding of their individual needs. As well as vital information about medication, toileting, feeding and communication they offer a vital space to explain your child’s more unique characteristics too: ‘How I show pain,” “How I eat”, “What makes me anxious” “How am I usually”, etc.

Download the health or hospital passport for your area below and review it regularly to keep it up to date. Take it with you to all your hospital and health clinic appointments or stays.

East Sussex has two health passports that you can use:

East Sussex This is Me’ My Care Passport for people with learning disabilities https://www.esht.nhs.uk/wp-content/uploads/2017/10/This-is-me-My-Care-Passport.pdf

East Sussex Healthcare Passport for children and young people with additional needs :www.esht.nhs.uk/leaflet/this-is-my-hospital-passport/

Brighton and Hove Hospital Passport: www.theroyalalex.co.uk/parents-families/health-passport/

Trips to A&E
Accidents and emergencies can happen to anyone at any times so you and your child may well have to attend your local A&E department along with everyone else at some point.

In Brighton and Hove, The Royal Alex Children’s Hospital has a dedicated 24 hour Children’s Emergency department for children arriving via A&E or their GP, which means that children can get seen sooner and are seen in a much more welcoming environment.

You may not get prioritisation in other A&E departments, however, and you may not have qualified paediatric nurses on duty.

In this situation, you can play a crucial role in making sure your child gets the help they need. If your child will really struggle with the wait, tell the person in charge of booking about your child’s additional needs and how the wait may affect them (and the other people in the waiting room). Take your health/hospital passport or your child’s Red Health Book with you and, remember to take them with you whenever you go away too.

I think you can help the health service to be more useful to you. We were up at the A&E department at the County three weeks running one time, and I always find if you’re in a place like that where you might have to wait a long time, it’s no use just sitting there waiting and hoping your child won’t have a massive tantrum. You’ve got to be upfront and you’ve got to tell them exactly why your child’s got to be seen next, and they were always absolutely brilliant and got her in there really fast.

During the current coronavirus emergency, if it is necessary for your child to attend a&e, please limit the number of family members/carers who accompany your child to the minimum. Alert the department by telephoning in advance if anyone in your family has recently been unwell. Be aware that they may need to take extra infection control measures which may limit where you can accompany your child in the hospital.

Hospital stays
Staying away from home can be a frightening experience for anyone, especially if we are unwell, around people we don’t know, and things happen to us without any warning. This is how in-patient treatment might seem to a child but there is a lot we can do to make stays in hospital better.

Ask if the hospital has information or support to prepare children for their stay. Some hospitals will have a picture book or website that you can look at and some hospitals have specialist staff who are trained to help your child prepare for a visit beforehand.

Download Amaze’s fact sheet Admissions to hospital [pdf 610kb] for lots of tips to improve hospital stays.

Great Ormond Street’s website has lots of information you can share with your child about hospital stays at www.gosh.nhs.uk/children/staying-hospital, though some of it only relates to staying there. NHS England also produces easy read guides on hospital stays for people with learning difficulties that you can read here: https://www.nhs.uk/conditions/learning-disabilities/going-into-hospital/

I think you can help the health service to be more useful to you. We were up at the A&E department at the County three weeks running one time, and I always find if you’re in a place like that where you might have to wait a long time, it’s no use just sitting there waiting and hoping your child won’t have a massive tantrum. You’ve got to be upfront and you’ve got to tell them exactly why your child’s got to be seen next, and they were always absolutely brilliant and got her in there really fast.

Tips for admissions to hospital

  • Get a Health Passport (see above for details).
  • If your child has communication difficulties, write out a guide to help the staff understand what he or she is saying. For example, if they use signing, how do they indicate for ‘toilet’ or ‘ouch, that hurts’?
  • Tape important messages that you want everybody to be aware of above the bed or on the locker.
  • Talk to everyone, whenever you can, to ensure that as many people as possible understand your child’s needs.
  • Make sure you are 100 per cent clear what is happening. Ask questions, and ask again, if you still don’t understand.  To feel safe, your child needs to feel that you know what’s going on.
  • Ask for cover to go for a comfort break or get a cup of tea. Depending on your child’s additional needs, they may need one-to-one supervision at all times to keep them safe. Explain this to staff and see if they can help. There are individual rooms at the Alex which seem appealing, but may make it harder for you as a parent to get support. Friends and family come into their own at times like this.
  • Don’t forget non-medical staff on the ward: they may see the children more often than doctors and can be very good at making children feel secure.
  • Don’t assume that every member of staff knows everything about your child’s condition. The information you gave the person in ENT won’t necessarily have got through to the X-ray department by the time you will see them. Be happy to tell it again.
  • Explain to other children in the ward about your child’s additional needs and find out what your child would like them to know (and also NOT to know)
  • Ask for the Play Specialist to visit

 

It is your child, it is not the doctor’s child, and if you don’t like the way they’re bandaging him or they’re doing something that you know will upset your child – even though all the other children with that syndrome are bandaged in that way – you say so, you negotiate.

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