16 Hints For Dealing With Your Child’s Health Specialists.

Dealing with a child that is sick or has a physical or mental disability is stressful no matter how sick or what the symptoms are. But as your child’s primary advocate you are left doing what you can to find a solution or a way to manage the issue.

Sometimes you might have a day like I have had today and leave annoyed and frustrated by the specialists you have entrusted your child’s health with. Here are 16 hints that have come from not only my own experiences but also my beloved friends and family members dealing with their own children’s’ health issues and specialists.

1. For something new you have to start with the GP. A GP can not only be helpful with a referral, mental health plan and primary health plan but they can help get an earlier appointment for you. So once you have rung the specialist and told there will be a 6 months wait for their next appointment get hold of the GP and get them to ring and chase them up until they find an earlier appointment in an acceptable time frame.

2. Get to know the secretary or receptionist. No matter how frustrated you are feeling try and not give them too much of your wrath as they are in charge of the diary and the notes that get passed to the specialist as well as reminding them of outstanding letters.

3. If you need support or changes made at school then get a letter from the specialist. It is also good to keep a copy for your own records if you have to move house and start the process all over again.

4. Get a copy of any x-ray or ultrasound if you can especially if going from one specialist to another. Don’t assume that if your paediatrician orders an x-ray to pass onto another specialist that it will actually be forwarded on prior to your appointment.

5. Further to no 4, after every test, x-ray, assessment make sure you ring the paediatrician or whomever requested the test done to make sure the results are read. Don’t rely on if they don’t ring everything is ok. Follow up on everything.

6. Keep notes on what you discussed with the Doctor or specialist, especially with psychologists. That way you have a jumping off point for the next appointment. This keeps some context with the appointments. These Doctors see a lot of patients and sometimes it can be difficult for them to remember off the cuff what you are there for.

7. Prepare yourself to wait. Whether it be at the public hospital or a private room long waits are going to become the norm. Things to have with you include a bottle of water, some snacks like muesli bars and your phone charger or a book. Perhaps a small drawing set for your child or a smart device for older ones with charger or portable battery.

8. You can process specialist receipts through the Medicare app on your smart device. You don’t have to line up and wait.

9. If what you are being told doesn’t seem right to you ask questions, do your own research but don’t always rely on Dr Google. If you really aren’t happy be prepared to find someone else to find answers.

10. Make a list of questions to ask the doctor. It is so easy to go to an appointment and be side-tracked about different things and then leave thinking “bugger, I forgot to ask that.”

11. If you are headed to a new specialist take all the notes you have including the ones from the hospital when the child was born. You don’t know what could possibly help the doctor so in this case more is better.

12. Find a team that works for you and your child. It may not be made up of the usual suspects that your Doctor is used to working with, but if it is getting results, go for it.

13. Don’t give up. When handed lemons make a margarita, take a breath and carry on.

14. Make sure you have your own support team in place. You might need to find someone to debrief with whether it be a counsellor, psychologist, your GP, minister or good friend. Find someone to let you just talk and get it off your chest. It is like they say in airline safety briefings, make sure you have your own oxygen mask on first before helping others.

15. Talk to others about your experience. You will find friends in the strangest of places. People that are or have gone through what you are going through. Knowing what has worked for others can provide jumping off points for you.

16. At the start of each new school year make an appointment with your child’s new teacher. Give them a tip sheet about any current issues and ideas on how to handle various situations. Don’t assume that a hand over will happen between the teachers. Foster an open relationship with the teacher, and support each other.

If you are in this situation, I wish you luck on your journey.

What other tips do you have when handling your child’s medical team?