I've been in the waiting room with regular Echo's/MRI etc, reading watching and PM'ing for a year or so and have found this site tremendously helpful.
I now have appointment with surgeon having been referred by Cardio team as AAA is now 5.2 cm with accompanying BAV moderate stenosis. I'm curious as to long I should expect the wait to be between agreeing with the surgeon to go ahead and waking up in HDU post-op? (COVID19 etc permitting)
Steve
Hi Steve, I imagine it varies a lot by urgency & surgery type but here’s what I found in case useful.
From first A&E to confirmed diagnosis (atrial septal defect needing OHS, tests via private medical insurance) was quick - about 5 wks.
From then to meeting surgeon (now under NHS), also quick, 3 wks despite Xmas in between.
Surgeon mtg 8 Jan, confirmed what the images told him and the surgical plan. He told me surgery wouldn’t be any sooner than 3 months, because I think he had his surgery lists roughly planned out for that period. But that it could be shortly after that. So 3-4 mths was the working assumption, perhaps helped by me explaining some other circumstances (I was about to be made redundant & have no income, so I asked if we could do surgery as soon as he could, so I could plan my job search.
I kept in touch with his secretary (I’d really recommend this, as they usually have some influence & diary visibility) nearer the time.
Then I got about 2 wks notice for the open heart surgery date of 3 April, which was almost exactly 3 months after meeting surgeon. I was pleasantly surprised that his rough timeline worked out, as I’d assumed there’d be more urgent cases than mine, but I don’t think that’s the only factor.
And “waking up” in HDU was 2 days after that ! (I guess I was officially ‘awake’ earlier, but mine was a complex & long surgery & it took about 2 days till I was fully aware & knew what was going on around me).
Good luck with your dates. My advice is, the surgeon’s secretary is key !
Hi "Teal"
Thanks very much for taking the time to reply - very informative and talks to exactly what I'm thinking of. Getting to know the admin staff seems to be a common theme on this board!
I'm assuming that there is fair degree of uncertainty due to emergencies taking priority over elective but your 3 month indicator is m ore than I had before.
Steve
Hi Steve, Really, really useful, thanks on behalf of everybody else. Wish I'd seen this 11 months ago when doing so might have saved my daughter. Interesting points - a) The surgeon’s secretary is key ! However, one of our lessons is if you not getting proper, professional answers from Surgeon or his secretary go to PALS to help you, we didn't; b) Go private if you can afford it at least for the scans and diagnosis, even when as so often happens you go back to the NHS for any real expensive treatment they can't/won't handle. (That's what Private means here in UK). Having said that even better especially if you can't afford private is to stick to Papworth (or another good hospital) if you're with them and like for us (daughter and wife) they are and have been throughout providing excellent service and communicating with you and your GP even if they don't do PEARS. We wished we had. Again, Steve, Thanks - good post. Cheers, Paul.
Update on the waiting room door....having had Surgeon consultation on March 18th (by phone) lockdown started 21 March!
However, it seems NHS backlog is beginning to move (at least in my area) and I had CT Angiogram yesterday and case review is apparently 15 June - sleepless ahead until I hear something defiinite but am starting to think I may need to prepare.....
Curious to hear if others 'in waiting' have had similar signs of movement?
Hi Steve, Answering a bit late, and yet to see if others have responded with their experiences. Another lesson for us was that we should have been on this forum back when you posted this. Actually good to see evidence and language that backlog was beginning to move for some (at least you and a few others) in, when was this post ?June. I've been asking for info and data to reassure me of that in a more objective manner but not getting anything from Royal Brompton or NHS England. The Harefield Team published a great article about performance there up to first week of May re. emergency surgeries and have an update to take that analysis up to I think September but 'awaiting reviews' for its release. Liverpool have published some good positive figures and analysis. However, getting real, solid, information on whether and how well hospitals generally, NHS overall were and are actually doing on this is well nigh impossible. Or can anybody point me to where I can find week by week or month by month, ideally by hospital since say 2018 (to get pre-COVID comparison): a) Number of heart operations performed, b) Number of heart operations put on hold; c) Number of people dying while waiting for those operations, d) Number of people that are going to die because they don't get their operation. Maybe they were doing their best to catch up and my daughter was one of the few 'unlucky' ones but I've been asking, and not getting answers. So they either don't know the numbers and hence are not bothered about about patients awaiting life saving, time critical surgery or they are covering up that they (i.e. management, NHS, Government) have not been bothered about them and/or have other agendas. Even the BHF as they have explained can't get this basic data but at least they are trying to highlight and pressure Government on the issue - e.g. the extra 800 under 65 (up 13%) they assessed as having died up to October from heart and circulatory diseases cf. to pre-COVID years.
waiting times
Further In The Door
Waiting - impatiently
waiting lists
Post-AVR: As one door closes, another opens.
