Advice from other parents

2 mins read

Top tips

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 is affected by their disability or condition. 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.