No Chance of "Inappropriate Happiness" Today!

I showed up for my 11:45 appointment with the Rheumatologist, at 11:15.

Bright-eyed and bushy-tailed, I was eager to see her!

It's been 6 months since I've seen her and a lot has happened that we needed to discuss: I have tapering news, my knee (which she drained 6 months ago) is way worse, since I "fell for Billy Joel!" It's needed to be drained again for at least the last 3-4 months, but I've been very patient and I’ve waited for today! We need to talk about my knee replacement surgery; yes/no, when, where, etc... Has she talked with the Orthopaedic Surgeon? The tingling/numb feet have been pretty much diagnosed as Small Nerve Fibre Neuropathy with Autonomic involvement (although officially I will not be told that until November 5th, when I see Consultant Neurologist). Did she receive the letter from the Neurologist? What does she think about all this? And, most importantly… what do I do after I hit 20mg????? We had only ever talked about GETTING me down to 20mg and then she said "we'd discuss." I'm at 22.5!

I approached the reception desk with optimism and a HUGE smile! I was HERE and it was my time!

I kept my energy level and my optimism up, even as the grumpy woman sitting at the desk typing something (obviously VERY VERY important) totally ignored me for what seemed like a 1-2 minutes... I just stood there smiling like an idiot!

A second lady appeared out of nowhere (apparently they had agreed on a "divide and conquer strategy" for the day) and said, "May I help you."

"Why, yes… Yes, you may!" I responded. "I have an 11:45 appointment, with Dr Jordan." Handing her my appointment letter.

She sat at the second desk and started clicking on the keyboard… all of a sudden I heard a DEEP sigh. The sigh was followed by the words, "Oh.... this is not good," talking more to herself, than to me.

I could not resist but to say, "What? ...what's not good?"

No answer. Just another deep sigh and more clicking.

I say.... "Please, please tell me there’s not an issue with my appointment!"

After a very long moment of silence, she said, "I'm terribly sorry... you are the 5th person to show up this morning, whose appointment has been cancelled. I very sorry."

Me: "Cancelled? What? By whom? What? When? Why?"

Her: "We sent you a letter on April 23rd."

Me: "Ummmmmmm, Nooooo. No, you did not send me a letter!" I received no letter! Wait, I haven’t seen Dr Jordan since April, how could you have cancelled THIS appointment in April?"

Her: "Yes, you saw her on April 18th, and we went you a letter advising we were canceling the appointment on April 23rd."

Me: (tears running down my face now) "No, no, I did not receive a letter... I was not advised this appointment was cancelled. (as I wipe the snot running out of my nose, with the back of my my hand… classy, huh?)

Me: "Wait, wait... you said 5 people showed up today, who's appointments were also cancelled... 5 people???? Don’t you think that NO LETTERS were actually sent out? That maybe there was an internal screw up with the letters?

Her: I'm very sorry.

Me: Is Dr Jordan not in the office, today?

Her: "Oh, no... she is here, but your clinic was canceled and it was changed to an Under 25 clinic."

Me: Oh… well... since I’m here! Can't we just pretend I'm under 25 and squeeze me in?"

Her: No, I am so sorry.

Realising she wasn’t going to budge and I was getting nowhere, (and needing a tissue desperately at this point) I decided to retreat.

No knee drain.

No tapering conversation.

No discussion about replacement knee surgery.

No chance for inappropriate happiness today. 😢

179 Replies

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PMRCanada

in reply to mamici1

a month ago

Exactly!! I'm in the same boat with my knees but had a different course of events. GP ordered knee xray earlier this year which didn't reveal much, but was still in pain and reported it to GP who then ordered a MRI of each knee which resulted in diagnosis of OA, every type of meniscal tear between both, ACL tear, baker's cyst, and complete cartilage deterioration of 5cm area. Got a (quick) referral from my GP to orthopedic surgeon who after first appointment scheduled a Medrol (steroid) injection in (worst) knee. That was Sept. 28th and initially had instant relief, however it is already wearing off. He said he'd do arthroscopic surgery if I had positive response to injection as he wants to ensure that doing it will provide significant improvement. Eventually I'll have to have a knee replacement if OA continues to deteriorate cartilage, but in the meantime we will try other treatments mentioned above. I will continue to try and lower my weight and pred dose, both of which will help.

You really do need to get xrays and an MRI! It will provide so much valuable information. I'm aware both Rheumy or Ortho surgeon can drain the knee for relief, but if neither are available in the short term, can you go to the emergency dept. of your local hospital (not sure the names and process in the UK??).

Regarding the cancellation of your appointment, that is not acceptable. How awful, with so much riding on the appointment. Oh the emotions you must have felt, I'd have been beyond p#$%ed off. Such mistakes are so much more weighted when we are in pain and feeling vulnerable. Hope something can be done to avoid it happening in the future, and that you are able to get some support for those closest to you in the interim. Sending big hugs your way. Please let us know how you make out with your knees and such.

25 days ago

Ahoy mate! Interesting your Ortho guy wants to hear from Rheumy before proceeding. Good he wants to collaborate so everyone is in the same page. Thought he would have his own guidelines regarding pred level and knee replacement surgery.

My Ortho surgeon said we will discuss pred levels before any surgery and advised me to continue with lowering my weight and pred dosage as it’s best for a favourable outcome and healing. He said nothing about checking in with (former) Rheumy.

Sure hope you get in soon so you can get your knee replacement surgery underway. A few on here have already been through that operation so they will be a wealth of knowledge and supportive resource I’m sure. We are all different though and I’m aware of your other health issues that sometimes serve to complicate matters.

Here’s to smooth sailing moving foreword, and let’s just keep the life jackets down below for now. You will make it through this next step in your healing journey because you are one of the strongest women I’ve met! (well, met online)

HeronNS

I presented myself to the duty doctor's station where they take people who can't for some reason be seen by their family doctor that day. I was being sent away as I wasn't a patient there any more as my family doctor had retired and his replacement had moved away. I had been going to that group since the 1970s. I was being told to go to a walk in clinic, where they do not do any follow up and keep no records of tests or anything of the walk in patients. I just stood there and unbidden tears fell out of my eyes and I whimpered that I felt I had fallen off a cliff, that I was in so much pain and had lost so much weight, and at that point she told me to wait a moment while she made a call. She phoned one of the stations (the practice is quite large so small groups of doctors share receptionists at separate stations) and a couple of minutes later was told that Dr ..... would see me. I went over expecting to be making an appointment for a future day, but I was seen within about 15 minutes. Yes I was very lucky because I know people similar to me are turned away all the time. There is a shocking shortage of doctors where I live at this time and it's getting worse as all the Boomer doctors retire in droves, as we knew they would but the powers that be cut back doctor training just in time to make the shortage even worse.

Telian

It's an understatement to say this is a disappointment - heads need to roll! .... but you must try to keep calm or you'll have a flare.... I see it's already been mentioned but PALS should deal with this for you in the first instance - I would have gone straight there while I was fuming. Give them a call, they'll look into the clinics for you - they are though another cog in the big wheel but they are paid to do this and are not ill! Tell them you need an appointment asap, and want to know why the system failed you - you're not suffering from ingrowing toenails for god's sake.

What I would do as well, and is more effective I've found, is ring your rheumie's secretary, he/she is the one that can get you in for a quicker appointment, and is also the quickest way to alert her boss to today's debacle - as she will be totally unaware of what's happened! Clearly you didn't have a rescheduled appointment, regardless you didn't get the cancellation letter, leaving only YOU knowing that today hadn't been cancelled. I would want to know what system they have in place that flags up patients due to be seen that haven't been given an appointment. They knew they'd cancelled a clinic, where was the replacement? Where is your name now? Throw the book at them, you have a right to ask and they have to reply about this huge system cock-up!! This doesn't replace you making an official complaint in this unacceptable mess. You are very unwell and this sort of thing doesn't help.

The receptionist wouldn't have been able to help at that stage of proceedings, they only work day to day with what's in front of them. They don't make decisions but I'd like to think they did tell there supervisor that a whole clinic was affected. It's been 6 months and you, and the other let down patients, haven't been given another thought, it's totally unacceptable (twice now)- you must bring it to the attention of the 'high ups'. I presume this is Brighton Hospital? Just a thought - do you normally get text reminders for your appointments? There will be lots of apologies but that's not good enough you want an appointment NOW. Keep us updated. x

Footfairy-1

I'm so *&£#> angry for you. It happened to me at one of my rheumy appointments. It was the second appointment and I was in a very emotional state before I arrived. I did the whole 😭😭😭 and snot thing and suddenly the receptionist showed a bit of interest. At first she couldn't understand why I hadn't received a letter then said I wasn't the only one!😱👿😡🤧

I haven't had an appointment with rheumy since March (should be ever 4 months). I rang in August, just in case another letter had disappeared, and was told they were just making appointments for October and November but only for first appointments. Not bothered really as I'd rather just carry on with my slow reduction without having to have an argument. My GP seems ok with it although I have seen a GP for ages.

Does your GP offer a sit and wait for emergencies? I would consider yours an emergency. So sorry you're in such a lot of pain. Hope it all gets sorted quickly. Please keep us informed - we're thinking of you 👨‍👨‍👧‍👦

AndrewT

Dear mamici1,

This is almost, and I will say it, f..king unbelievable! How can 'They', Treat You, this way?

A thought has, crossed my mind- make the most of that....Perhaps you could write in, to the Consultant, who MAY not be aware of the whole situation. I know that that, at first viewing, may sound daft/ stupid but, consider this, if their system is THAT bad then maybe (S)HE may NOT know what occurred. Do you 'follow', my thinking, here? If, your letter, is marked for his/ her attention, and you can be- at least fairly- sure that your Consultant will see it.

Just as an illustration, of a Consultant's influence, a few years ago now I moved Hospitals. My new Consultant, Dr Andi, wanted a Scan done. To cut, a long story short, I did not 'hear' anything, prior to my next visit. After being told this Dr Andi, said that, he would 'look into' the situation. There was a Phlebotomist, blood taker, two doors down from his office. I had just sat down, in the queue, when Dr Andi informed me that I was 'in' the following Wednesday. If, perhaps a big IF though, you could somehow 'get to' your Actual Consultant....well surely worth a try. Hence, my suggestion, of the letter.

As a 'Last Resort' you could always write, to the Hospital's Trust though, be careful here. If you 'rock the boat', too far, You might fall out. A 'Firm, Polite, Very Direct but Measured Response' is, no doubt, the best way- at least to Begin with....

Please do let us know, if/ when you have a 'Better' response.

Kindest wishes, from us all.

Marijo1951

I posted a while ago (What's up with the NHS?) when my September appointment was cancelled and I was given another in March. Yes, I can say that the Royal Free Hospital had the courtesy to send me a letter. After that I complained to the admin man in the Rheumatology department who said he'd look to see if there was a cancellation and found one for me in December. He advised me to call again in a month which I duly did, and he found me a new appointment for October - yesterday as it turned out.

So, if you had been told that your appointment had been cancelled, you could have done something similar. Not that I think this is ideal, far from it - how do people with less phone confidence manage?

I might add that the clinic was very crowded with patients and that my rheumy had 2 colleagues taking some of the appointments. I did actually see my named consultant (30 minutes late) and she whisked me through the appointment, hardly looking at me. Fortunately I didn't have any particular problems to discuss. I'm concerned about those patients who did want to discuss something worrying them.

I feel so angry that the NHS, which my parents and grandparents fought for and were so proud of, has been reduced to its current precarious state.

What you say is very interesting and confirms the gut feeling of most Canadians that we must NOT permit a parallel private system to develop. I think it was viewed as one of the mistakes the British made when the NHS was first set up and in the 60s when we got our medicare it was something which was avoided. For a while our doctors were allowed to "extra bill" but that, too, was squashed, at least in my province. Things are not great here but there is no way permitting private practice would solve any problems. Unfortunately there is so much pressure from our huge southern neighbour with health care businesses salivating at the prospect of doors opening to them in Canada, it's really rather frightening. Who knows what our careless government might give away in some future round of trade talks....?

MamaBeagle

What a cock up! I know you'll feel better when you've made your calls today - and definitely to the consultant's secretary who should give you a "not too far ahead" appointment. I used to be a Non exec director in the NHS and responsible for complaints - which to be taken seriously had to be put in writing - the first sentence being - this is a formal complaint - and the last one asking for his response and a solution to the problem- and send it to the Chief Exec. If it happens again just sit there and say you won't budge until somebody sees you, it can work but go prepared with a blanket and food supplies - and your meds!!!!

Re the knee - my OH had the same problem prior to his new bionic ones. We were in France at the time and our GP said he was quite competent to drain the fluid but it had to be done by a rheumy - it may be one of these endless European Directives!

Also they have to go through a protocol of treatments until they have the light bulb moment "You need a new knee!" Even though everybody knew that in the first place!

Good luck and keeeeeeep smiling!

MartiFL

Here in the States, most doctors nowadays have at least one or two PAs (physician assistants). you only get in to see the doctor if you’re on death’s door. they basically triage, but can also do a lot of what the doctor does—including prescribing drugs.

i went in to see an orthopaedic surgeon earlier this year, thinking i was ready for a knee replacement. but the PA insisted we try draining the knee first. i was reluctant (ESPECIALLY when i saw the size of the needle).

but it wasn’t bad at all. and the PA did the deed.

she also injected a steroid gel (which took away my then-undiagnosed PMR pain as well as my knee pain. unfortunately, the relief only lasted four days.

anyway, long story. but, what i am getting that is that there may be an assistant who can help you. don’t know what the health care system is like in UK.

congrats, btw, on 22.5!!!!

proud of you, gal.

now. go blow your nose and put on some of that pretty red lipstick!

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