Keep copies of all letters, appointments, test results and benefit information in a folder. Keep a note of all the phone calls you make as well as who you spoke to. A simple lever arch file with dividers, or a concertina type file would be ideal
Make a list of all the professionals involved with your child, their contact details and what they do as it can get confusing – if anyone attends a meeting and you are not sure who they are or what they do, just ask
Get organised – get a diary, use your mobile phone (you can set alerts for appointments), or get a big wall calendar to mark appointment times
If you have been waiting a long time to see a specialist or professional, do not be afraid to ring and chase this up – or get someone to do it on your behalf. It is not unknown for notes to get lost, or appointments missed. Ask to speak to the consultant’s secretary, or the professional you were meant to be seeing
Create a communication passport for your child – this is simply a way to pass on important information about your child such as their medications, likes and dislikes, what to do in case of an emergency. Templates are available from Personal Communication Passports website: www.communicationpassports.org.uk
Keep a record of your child’s progress – this could be in the form of a diary, photographs, videos or mobile phone recordings
Make a list of all your concerns about your child. This can be used for meetings with health care professionals, social workers or educational staff
