I think the problem for us has been the fact it is a complicated rare condition. I am very upset, not upset at you.
I am not sure about joined up records helping at all.
The GP had records, it was school that messed up record keeping.
The A&E dept was the same hospital that diagnosed the latest stuff, so they had it on their records there, the dickhead consultant was incompetant at treating my child and was too arrogant to call for backup as he was out of his depth. I will be getting a report with the error he made noted in it and be complaining about him in due course to his employers.
What worries me is this condition is underdiagnosed and with dislocations, bruising, anxiety, gi like incontenance etc symptoms it can look like abuse by a parent and we had a diagnosis.
I went through hell before as a rhumatologist was ignorant of the fatigue part of the condition which was available to him at the time, made me look a liar.
Fed up in general of being bullied for this in me and my kids. I worry for others.