I've been waiting for my urgent appt, which was promised a couple of weeks ago. Using the top secret phone number revealed by exasperated GP, who is very honest about not having the expertise to help, I have nagged every three days. Today I'm told I'm "on the waiting list for an expedited appointment" and that my GP could ask for something faster. My GP already has! This is not even a referral, it's an urgent request to do a follow up because I haven't been seen since Oct 2015 and am considerably worse than then. A waiting list for expedited appointments? They are "a bit behind"? It's worse than I thought .....
Not giving up, not giving up, not giving up ☹️😀
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Lupiknits
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Thanks coco. I've phoned GPs to let them know about the waiting list, and am enlisting extra support from them. Will phone magic number every day until they get so fed up they see me. Can't think of much else at the moment. Very Angry Son ready to go with me - we know how males make a difference. 👍
I knew this dept was in a huge muddle. Wonder if they have a waiting list to get on the waiting list? 😀
For what it's worth, the first 4 or 5 years @ my clinic gave me the impression it was in a muddle...barely functional...but they have turned that around and now clinic "function" is so good that am constantly pinching myself (Not sure if my fellow patients feel this way though)....Maybe this improvement is due to the hospital having been put into special measures last year or the year before (it's out now!) cause I've noticed a similar improvements in all my clinics there
So keep up the pressure...and make your views known...things can get better
Why is it that every time we turn a corner we find...another corner! It's almost laughable - a waiting list for the waiting list? Can they not see how farcical it is? Whilst you're suffering? I'm utterly appalled.
Keep going, you'll get there! Keep us posted...
Charlie xx
Oh LK it's so relentless and exhausting isn't it? I've had this too but never such a massive interval of time as you.
I did try cardiology to see when treadmill test and echo will be but they denied all knowledge. Gp sec says nonsense she's sent referral 3 times - once by hard copy and twice electronically! There's a 9-11 month waiting list anyway. I'll try cardiology again sometime soon to see if 3rd time lucky. Tried for a gp appointment but the aren't taking any bookings for any planned consultations with any GPs 2 weeks. After that mine is on annual leave. I suggested I turn up or phone first thing for a last minute one but she says that's changed to urgent only. Spose swollen blotchy painful fingertips and nails aren't really urgent xcpt to me!
Take care and keep pestering for all you're worth - it's a shocker! X
Wow Lupiknits! That's some wait! Thought my area was bad! Where are you? I'm trying to think of what else you can do to expedite it but there isn't anything really is there? Are you waiting for an appointment with a specific Rheumy? Or just any of them in the department? Is there another hospital you can get to, with a shorter waiting list? I'm sure you've done all this but otherwise lost for words. Keep phoning. x
The only "choice" I have in this part of Leeds is this one rheumy place ( the person on the phone called it the CTD clinic, which rather helps me know what I'm classified as, though I don't need the name, the treatment will do)
Anecdotally, the place is overwhelmed with waiting times of well over six months for first referral. Sometimes I suspect it's because it's run by a couple of profs who have other things to do. I don't know.
A GP has called back to suggest a couple of meds. I think the Raynaud's is the worst at the moment ( not showing you my nose) and she says if alll else fails, we can try some cautious nifedipine, but my low BP means I'lk have to have some supervision for a try. She also said to take the max co-codamol on top of the butrans. I'm sort of on top of the pain, and used to it. Not exactly the problem. Just been flaring since the beginning of the year.
I wish the place was put on special measures. It can do the trick, as coco has found.
Is Sarah Mackie one of the profs? She is only part time.
JHunt has caused part of the problem all over - doctors vote with their feet. Brexit is adding to it as EU nationals come to the end of a contract and don't feel welcome so don't renew.
Not a name I know, but the prof who originally saw me, found my nailfold capillaries exciting, and ordered every test under the sun is Italian. He asked if I'd take part in research to see how many are dead within ten years and cause if death. Thought I'd get better follow ups that way! Might be Brexit probs, in which case we may all be doomed.
Wasn't sure whether to laugh or cry at that! You were asked to take part in research to see who was dead after 10 years?!? What an an exciting offer. 😂😂
Yes, you are right. And rheumatology and dermatology are already struggling from what I've heard. Population of Pembrokeshire is 122,400 (last census 2011) and we have two part time Consultant Rheumies for all. At present, no Consultant Dermy at all. It's a terrible state of affairs.
The dermatologist I saw was from Egypt...he was a locum as we don't have a full timer in my part of North West 😐 He was good and it was him that ordered loads of bloods (antiphospholipid positive) and helped me get referral to rheumatologist. I'm not holding my breath for when that will be! Perhaps sometime in 2018....please excuse sarcasm today - feeling utterly naffed off 😑
Wow Charlie! I really don't think sarcasm needs to be forgiven. It's unbelievable how long it takes even to get a diagnosis in the first place, and then have to wait to get any follow up. So many here have gone through years and years ....I was "spotted" straight away ( then somehow dumped) Please feel free to grump away. Seems we are in the same boat.
In Wales the waiting lists are getting longer and longer. We're lagging behind in the NHS stakes. Devolution has created a huge gap between NHS England and NHS Wales. A total postcode lottery. It's just been on the Welsh news with even doctors saying it's not performing and we don't have a dedicated trauma hospital in Wales - the map for England had a number of them. 😬😬
Its disgusting and even air ambulances are charity funded. I live in Essex, our gynae/maternity services are amazing my daughter (gestational diabetes ) was there for four hours today saw everyone. I saw gynae Tuesday got appointment today for op in two weeks! Rheumy on the other hand not so good as is always the story, but no where near as bad as Leeds.
Possibly depends on who you see at Leeds since I work as a patient research partner in the research group of several of those rheumies. They are terrific in their field.
But the waiting times goalposts were selectively moved by the current gubmint. Wales is a different matter altogether - it is run from Cardiff. Very badly.
Leeds wasn't my experience just commenting on Lupiknits experience. Across the whole of the UK there is so much inequality and pressure on the services. Still seems much better than when you read others experiences from further lands.
Breaking news - I'm excited! Two calls from rheumy nurses. The first to say they have put in another urgent request because they are unclear how to help (fair enough) the second to say appt at 11.50 am tomorrows. I'd do a happy dance, but well, not at the moment ....🍾
Tomorrow! What a turn around! I'll do a brief jig for you! Please let us know how you get on. Have everything crossed it is a positive appointment for you. x
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Newbie waiting for rheumatology appointment.
Need to talk.thank you for listening
First rheumatologist appointment 
Still waiting for confirmed diagnosis 
