SO glad I went to the LSN conference last week, it was really interesting and good to hear others' experiences.
In particular, it made me realise that being patient for 7 weeks without hearing anything back from my consultant's referral to St George's probably was being too patient, so first thing this morning I rang them up to check that they had received the referral. Turns out they have no trace of it.
So today spent approx 90 minutes (mostly on hold) on multiple calls to the local consultant's secretary and the admin team at St George's and eventually have achieved that the referral letter has been emailed through today. So presumably I'm right at the start where I should have been 7 weeks ago, and IF the referral is accepted, I can expect an 18 week wait time for an appointment.
7 weeks wasted; and having read the referral letter again I'm very nervous about whether or not it will be accepted - the letter is based on an appointment that took place with someone else back in May, at a point when no-one had measured my leg to assess how much swelling I had (so there's nothing in the letter about that), nor does it make clear that I still have no idea whether I have primary or secondary lymphoedema.
So now wasted time = at least a year with GP trying to refer me to local clinic but not understanding the system so referring me to inappropriate service and not telling me about referral (so I wasn't aware should be chasing up); then 2 months wasted waiting for appropriate referral to St George's; then 7 weeks with referral 'lost in system'.
Am feeling very frustrated and even more upset. All the while my lymphoedema seems to be getting worse.
Moral of the story: I guess keep checking and chasing. Don't sit back being patient.
Fingers crossed it goes better this time around....