Thank you for your advice and information. It is a relief to get some informed advice and I agree that the worst thing is not having the relevant information at hand to know what is going on or has happened.
I am trying not to look at the net too much until we know what is actually happening.
The biggest thing that is causing anxiety is that we get referred to people with a note from the doctor saying to see us urgently, then those people do not seem to see it that way and are making us wait to get tests done.
Hopefully the next doctor will be able to push for everything that needs to be tested to be tested.