Advice from other parents

2 mins read

This advice applies across the UK.

We gathered tips from parents who have ‘been there’ – hopefully these will help you to manage your diagnosis journey.

Make a list of all the ways your child’s disability or condition affects them. This can be useful to show doctors at appointments, or people in schools or nurseries.
Keep a record of your child’s progress. Keep a diary, take photos and videos if possible. As well as being a useful record to show to doctors, it can also be comforting to look back and see the progress your child has made.
Get a diary or a big wall calendar with loads of space to mark appointment times.
Keep a paper trail. Keep copies of all letters, appointments, and test results in a folder. Keep a note of all the phone calls you make as well.
Prepare the questions you want to ask at an appointment beforehand. Write these all down in an appointment notebook and take them along with you.
Take a friend or relative along to your appointment so they can make notes while you talk. It can be hard to remember everything you are told – especially if you are upset.
Do not be afraid to ask your specialist the questions that concern you – however silly or insignificant you think they may seem.
If you feel that you need to see a specialist or if you think you may have somehow got ‘lost in the system’ – do not be afraid to phone. Ask to speak to the doctor’s secretary to find out what is happening with your child’s appointment.
Use a combination of local services and specialised services that suit the needs of your family best – this will reduce stress, time and expense by not making long unncessary journeys. Make sure you let the professionals know this is your plan.
Be persistent. If you feel all the ways to get a diagnosis for your child haven’t been explored, then you can request a second opinion. You can go back to your GP and ask to be referred to a different specialist. Or if you are unhappy with your GP you can see another one.

Read our tips on working with professionals.