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