I have been a carer for 14 and a half years now. My son has Joubert Syndrome, is visually impaired, and has a severe speech disorder with elements of dyspraxia, moderate to severe learning difficulties, fine motor difficulties, and type 1 diabetes.

 

So I have attended plenty of appointments for him in the last 14 years!

 

Whenever I am due to meet with my son’s professionals, I always ensure I am aware of the agenda prior to the meeting. I take the relevant reports with me and I question inconsistencies in any of the reports. I take my own notes and I ensure that anything outstanding is dealt with, regarding my disabled son.

 

If I have any concerns to raise within the meeting, I include them within my notes. I make sure my time with my son’s professionals is fruitful and more than a chance to look at each other’s faces!

 

If I’m bothered by anything, I raise it with the doctors and usually they are able to address my concerns within a few days. I keep at them until I have a suitable response!

 

If there is a lot to cover in the meeting, I type up the points that I wish to raise, print two copies off, hand one to the doctor and keep one myself. The doctor usually reads and replies to my queries and I scribble down the responses, checking that they are consistent! I find that being prepared in this way for meetings is a good strategy for me, enabling me to be a better carer for my son.