I have a family member who had a similar experience to the one you describe Helen.
This involved an urgent tertiary referral that would have been bounced back to the patient had they not kept their own notes.
As he had the notes my relative was able to show copies of all the letters, scans, EEGs and reports that indicated the referral was potentially life saving.
In his case I believe his GP would have intervened, however the GP did not have all the notes and was missing a key echo-cardiogram, that showed definitively an urgent intervention was needed.
My recommendation to