No Chance of "Inappropriate Happiness" Today! - PMRGCAuk

PMRGCAuk

13,014 members23,616 posts

No Chance of "Inappropriate Happiness" Today!

Hidden
Hidden

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

This makes me sick just reading it. Sure hope you get a resolution soon. Remember: this too shall pass...easier said than done, I know

Hidden
Hidden in reply to Twopies

This too shall pass... but at that moment Thank you!

😖😖😖😖😫😫😫😫😭😭😭

Hidden
Hidden in reply to SnazzyD

YES, SnazzyD, Thank you!!! This was me exactly! Angry, angry, upset, disappointed, crying, snotty. I don't know why I reacted so emotionally... (?) I guess because my expectations were so high!

As they say, "Expect nothing and you'll never be disappointed."

SnazzyD
SnazzyD in reply to Hidden

It’s a shame about the snot, it reduces one’s dignity factor far more than it should.

Hidden
Hidden in reply to SnazzyD

It was a shame... I was so distracted! 🤧

O Melissa my heart goes out for you. Standing there with No one expressing empathy for you. Not even handing over a tissue. After sadness and anger I am sure you are going to make a complaint and hope that helps. Or even you manage an article in a newspaper, writing is your strength a. O. ❤️

Hidden
Hidden in reply to Zofitmogelijk

Thanks. Really... give a girl a tissue at least! 🤣 Yup have been through the anger and sadness phases... then the sarky post... now an official letter!

Can you imagine her telling 6 people, "...we sent you a letter!" Did she not see the ludicrousness in that statement?

Hidden
Hidden in reply to Hidden

One letter going missing - fair enough - at a push but 5 people showing up & had your appointment been rearranged? Because when they cancel, they rearrange or should do!.......

Hidden
Hidden in reply to Hidden

You're right MrsNails, Seriously... I think she felt silly saying at least twice, "A letter was sent to you..."

Hidden
Hidden in reply to Hidden

But, where’s the rebooked appointment?........

There should have been a second letter with the rearranged appointment.

Obviously, the Clinic was changed but no one informed or new appointments booked!

Hope you get seen very soon.

Angela xx

Hidden
Hidden in reply to Hidden

Of course... I think there was a mass cancelation of my clinic and then someone went to lunch!!!!

Bummer. They never will admit to a screw up ever. Have a good whinge it might prevent a future screwup.🤬

Hidden
Hidden in reply to CT-5012

Thank you, I will have a whinge, although I have let it out on all my friends here.. sorry!

CT-5012
CT-5012 in reply to Hidden

Apologies not needed, vent away @#£&🤬🤬🤬

Hidden
Hidden in reply to CT-5012

xxxx

#&*% ,”/&%@🥊 what the *&£# . That’s terrible ,so sorry .

Hidden
Hidden in reply to Chrob

Thank you.. Yes! That is exactly what I said "#&*% ,”/&%@🥊 what the *&£#."

That is TOTALLY UNACCAPECPTABLE! I am fuming for you. If they cancelled (which they obviously didn't!) Why didn't they send you a replacement appointment? I so sorry you've been treated this badly.

Hidden
Hidden in reply to scats

Thank you... and YES! Where is MY reschedule letter!

DorsetLady
DorsetLadyPMRGCAuk volunteer

Abysmal treatment. Think a short sharp letter of complaint to hospital chief medical officer (or whatever he/she’s called) is required.

Hidden
Hidden in reply to DorsetLady

Yes, thanks! I believe you may be 100% correct DL!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Hidden

It was obviously an admin cock-up if you were the 5th or 6th person investigated. No wonder the first person you approached didn’t want to know, I bet she’d already had enough, probably through no fault of hers. But you do need to highlight the fact.

Rugger
Rugger in reply to DorsetLady

Chief Executive!

You could of slapped her!! I feel like slapping someone for you!

That happened to me with a rheumy appointment,I would definitely of known if I'd got a cancellation letter,I'd been waiting 8 months for the appointment. This is just unacceptable!

Hidden
Hidden in reply to Sandradsn

Ok, that made me laugh out loud! I could have slapped her! ...but the fact that you now feel like slapping someone for me had me almost spit out my tea! Thank you! I'm sorry you got jerked around too! It is unacceptable.

what a cluster-fuck. so so so sorry. ugh.

Hidden
Hidden in reply to yogabonnie

🤣🤣🤣 I could NOT have said it better myself, YB!!! I feel much better already after reading that! Hahaahahahahahahahaha

My heckles have risen reading this!😱.......how do they expect patients to put up with that....hope you will complain to somebody, after all 5 letters!!

Have they booked you a quick appointment...I hope so!!

Think my blood pressure is going back to normal now......good luck....

Hidden
Hidden in reply to Longtimer

🤣 Oooooo, new word, "heckles," Thank you! "Raising someone's hackles means you've made them boiling mad or super annoyed."

Keep that blood pressure DOWN LT.... No more trips to A&E!!!!!!

xxxx

Longtimer
Longtimer in reply to Hidden

Perhaps heckles or hackles depends were we come from....either way makes us feel like s..t!😈

Hidden
Hidden in reply to Longtimer

Totally.

This is totally inacceptable.

PALS are needed here - this is what they are paid to do - waste of time writing make an appointment to see them and take along a mate. They do work and you will get appropriate help.................they have clout.

nhs.uk/common-health-questi....

BTW, since Clinical Commissioning came along, Consultants can no longer refer you direct to another Consultant.

Your GP needs to refer to the the Orthopedic Consultant.

So when is your next appointment - I suppose when pigs can fly. You really need to nail this now.

Hidden
Hidden in reply to jinasc

Thank you!!! I will speak to PALS.

I have been to GP (about knee) twice and they keep telling me Rheumy needs to address... because she drained it once, they say it's up to her. I keep saying she's a Rheumy, not an Orthopedic Consultant!!! I have been unable to walk properly all summer... I limp and have to take the bus or taxi's everywhere!!!! I was so looking forward to having her drain it again today and then begging her to refer me to an Ortho person! My guy is a "surgeon" and will only replace the joint... but it needs treatment while I am waiting for replacement!!!!!

PMRCanada
PMRCanada in reply to Hidden

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.

Hidden
Hidden in reply to PMRCanada

Wow! PMRCanada, We are in the same boat! I hope you have the life jackets because I don't! I have already had the x-ray and was told I need a total knee replacement. Have been waiting to talk to Rheumy, as Ortho guy wants her to determine what level on Pred I should be on before he does surgery... that is why this appointment was so important! Thanks for advice and hugs! xx

PMRCanada
PMRCanada in reply to Hidden

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)

Hidden
Hidden in reply to PMRCanada

I thought that too, but he was adamant the he want her in on conversation, HOWEVER he did not manage to reach out to her since May (as he said he would!) His secretary suggested I talk to her and have her contact him! Seriously!!! I'm also have to talk to neurologist about it, as the neuropathy is into my calves.. not sure how well recovery from knee surgery fits with numb legs!!!! Me strong? I feel like a little wuss most of the time... always complaining, ranting and bitching. Sometimes I get sick of hanging around with me!!!!! ...but thank you for the lovely complement! ..and YES, here is to "smooth sailing" 🚢 for both of us... although , "smooth," has never been part of my life descriptors!!!!! xx

PMRpro
PMRproAmbassador in reply to Hidden

My suggestion would be to shop around orthopods for a knee surgeon who has the courage of his own convictions and can make his own risk assessment in terms of what pred dose he will accept to do surgery. You can do that - a lady in Cambrigeshire needed a hip replacement and her GP refused to refer her as "they won't do it until you are about 80" (she was 60 at the time). One surgeon refused to do anything while she was on pred at all, another was happy to do it asap (it was that bad) and at 10mg. They can only say no - but you will find one who will discuss options,

Tell the whole story to PALS.

Fluid on the knee is horrible................and if you have had it drained and it is coming back you need action...............

Your GP knows full well any referral to another Consultant is down to his practice and the CCG he to which he belongs.

Methinks you might just need to talk to the Practice Manager at your GP.

Hidden
Hidden in reply to jinasc

Hahahahaha, Methinks you are CORRECT!

The Surgery sent me away a month or so ago... telling me they could not do anything about the fluid on my knee, said my Rheumy had to address it. Me (being American) and not understanding NHS system, said "Okay."

I came home, got on the phone, called the Rheumy's office. I told her receptionist I wanted to make an appointment, was told I cant make appointment with Rheumy; I need to go to GP and be referred!

OH!, well I'm seeing her in a month, I'll just wait!

Silly me!

jinasc
jinasc in reply to Hidden

A month of agony with you knee. I don't think so................GP appointment necessary.

In the meantime, bone up on Clinical Commissioning Groups. Not only because you are an American, half the UK people who have used the NHS since 1948.

Yes, I was 10 years old am are now struggling to keep up with unwanted changes and holding onto a very precious item called the NHS for those like me who could never have afforded medical charges and some years even insurance.

Valnvaughan
Valnvaughan in reply to Hidden

Another route "in" is to call 111 cry a lot in pain and get a call back from a qualified person who advises "next step" .....could be an urgent GP, or A&E expect you maybe.

It happened to me just a few weeks ago. Valerie

Hidden
Hidden in reply to Valnvaughan

I never thought of 111, should have called them in the summer, when GP said "not their responsibility." DOH!

PMRpro
PMRproAmbassador in reply to Hidden

Er - if you are already on the rheumy's list, you can ask for an early appointment... You might not get one but you can but ask. In fact - after the mess and appointments cancelled (or not. Perhaps the secretary's office should be searched, my husband had a secretary who filed the cards needing appointments in the back of a drawer. She wasn't the secretary for much longer I assure you) you should be getting an early appointment anyway as it was their fault. One appointment letter going lost happens. Two maybe. Six on the same day? I think not.

Well done mamic1 for keeping your cool. How disgraceful to be fobbed off like that. As already mentioned by DorsetLady, send an email to the bods concerned, hope the other patients have complained as well.

I wonder how they would organize a "booze up" in a brewery. Flames and swears words to em.

I opted in for email appointments, at least that way they can't say they sent out a letter. They actually sent me an appointment for December via email.

Poor old thing, bet your stress levels zoomed after your non-appointment.

I'm fuming mad so you must be even more upset, angry, flaming annoyed, I could go on...........

Hidden
Hidden in reply to Primarose

Thanks for sharing my anger... I feel lighter already! ...and I didn't really keep my cool, I broke down CRYING, which is so not like me. Usually I would have been #&*% ,”/&%@🥊 what the *&£#. Hahahahahahaha

SnazzyD
SnazzyD in reply to Hidden

I find it interesting how much one can lose it and in what way before one is assigned to the ‘hysterical patient, can’t wait to get rid of them’ category, rather than, ‘this is a person who is really at rock bottom and needs our help’. It is a fine line and I suspect women are put there more readily but that’s another story. It is crap that one has to feel that breaking down is not a good thing in circumstances that really are the pits.

HeronNS
HeronNS in reply to SnazzyD

I have a family doctor and a proper diagnosis and decent treatment because I broke down in front of the right, compassionate, receptionist. I don't know where I'd be otherwise. They aren't all bad!

Hidden
Hidden in reply to HeronNS

Hmmmmmmm. Good tip.

HeronNS
HeronNS in reply to Hidden

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.

Hidden
Hidden in reply to HeronNS

WHAT???? I am gobsmacked! You were no longer a patient because your GP had retired????? WTF???? Good on you for breaking down... it worked! I am in shock at that story!

Hidden
Hidden in reply to SnazzyD

Thanks SnazzyD, Yes, very true... I can only imagine she must have been at the end of her rope though... if I was # 6!!!! Can you imagine the rest of HER Day! Yeah, my reaction just surprised me... I didn't know how much I was looking forward to the appointment!

Argh.....😠 Hope you get another appointment soon🌸

Hidden
Hidden in reply to Cyclegirl54

We'll see! Thank you!

Hidden
Hidden in reply to Cyclegirl54

Wooo hooo! next week!!!!!

Oh the expectation, the travelling, the parking, the cost, the arrangements changed so you bloody could attend....

&*#@&&&& and && again! No wonder you cried 😠

Hidden
Hidden in reply to peace_lover

Thank you. ... all that and yes, I just wanted my knee drained, to be out of pain and able to maybe at least hobble again. The Baker's Cyst is as big as a golf ball! ⛳️

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

Hidden
Hidden in reply to Telian

Thank you Telian! I am calm... I was calm except for the tears. Hahahahaha! I will call PALS and the Rheumy's secretary. And you're right I left before asking all the critical questions. I spent the day doing art work and feeling sorry for myself, but tomorrow I'll be on them like white on rice!!!!! : ) xxxx

Telian
Telian in reply to Hidden

Hope doing the art was as therapeutic as it sounds.....let us know how you get on :0 :) xxx

Hidden
Hidden in reply to Telian

It was indeed! Finishing off "Faces of PMR/GCA" masks to be sent to Australia! Xxxx

Telian
Telian in reply to Hidden

Awesome - only you could have thought of that! - can we see any? xx

Hidden
Hidden in reply to Telian

Yes, of course... when they are finished and the recipients have received, I'll post photos. 😈👹👺

Melissa, that’s lousy. 5 people, and they didn’t think that might be a clue? Yes, mistakes happen everywhere but the word “sorry”, used with sincerity, can help. Perhaps they hadn’t heard that either.

Suggest a call to the Consultant’s Secretary ASAP. Good luck

Hidden
Hidden in reply to Mai45

Thank you.... I am all over this tomorrow! I got my mojo back this afternoon! : )

Pipalina
Pipalina in reply to Hidden

Delighted your mojo wasn't gone for long!! The whole situation is so frustrating and really not conducive to your recovery...hope it's all resolved soon without too much (more) stress xxx

Hidden
Hidden in reply to Pipalina

Thanks Pip! I'm like a Weeble... I wobble, but I don't fall down!

youtube.com/watch?v=B_lbAoE...

Pipalina
Pipalina in reply to Hidden

Hahaha - made me chuckle. I look like a Weeble and it's soooooo not a good look! x

Hidden
Hidden in reply to Pipalina

Hahahahahahahahaha. I loved Weebles! My girls had them, but the song drove me CRAZY. I am, nevertheless like a Weeble. xxx

I am apalled and ashamed to have ever worked in an NHS that has treated you like this, Melissa. I would have been hysterical - not just crying snottily!

I agree with all the above - PALS, Chief Exec, Rheumy's secretary - let them all know what a shambolic system they have and what an effect it has had on a clinic full of patients.

"Disgusted of Bradford" x

Hidden
Hidden in reply to Rugger

Thank you Rugger! I worked for the NHS too!!! I worked in that very same hospital!!!! I had the same job she did! I know she had no control over of any this and it wasn't her fault. And she did seem genuinely apologetic... but man, she just wanted me out of there and for her nightmare of a day to end! And it was only 11:15! I must say, I bet I had a better rest of my day than she did!!!!!

Rugger
Rugger in reply to Hidden

Yes, she was a victim in this too. However, the blame lies either with a system which allows a clinic to be cancelled and the patients not told and not given re-scheduled dates - or an individual who didn't know what they were doing and messed up. Whichever is the answer, it needs investigating and lessons need to be learnt!

I hope this hasn't caused you to flare up.

Today you will be advocating for the other patients too.

Take care x

PS PALS might be interested to read this post and the 120+ (so far) replies.....!

I’m so sorry you had such a rubbish morning, I would have cried too.

Definitely complain and I hope you get that appointment soon xx

Hidden
Hidden in reply to Maisie1958

Thanks, Yes I will. ...tomorrow the phones will be buzzing!!!!!

I am so sorry to read your note. Myself? I would be crushed.

Hidden
Hidden in reply to Earl_the_Pearl

Thank you... I did feel crushed... for sure.

Nothing I can add that others have not said

Just sending you a big hug

Hidden
Hidden in reply to Rose54

Awe, thanks Rose54.

The similar thing happened to me not so long ago. In my case my appointment was 9.30am and they phoned my home to cancel at 8.45am after I had left for the hospital. I don’t know why it was cancelled the rheumatologist may have been ill, rather than in your case which is totally and utterly unacceptable. They seem to think we are just hanging around with nothing to do and can just drop in when convenient for them and they forget we may actually need some advice from the consultant. No wonder we all have high streets levels. My appointment was put off for three months.

Hidden
Hidden in reply to piglette

Wow! Bummer... but I guess if she was sick, she was sick!

3 months?????? Oh no that will not be acceptable!!!!!!!

piglette
piglette in reply to Hidden

She is not much good so I suppose it did not actually make that much difference!

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 👨‍👨‍👧‍👦

Hidden
Hidden in reply to Footfairy-1

I'm so sorry you experienced this too.... My biggest problem is my freakin knee!!!! And the GP won't touch it... they keep telling me the Rheumy has to sort it out.

I really don't understand the system... why is a Rheumy responsible for my knee?????

PMRpro
PMRproAmbassador in reply to Hidden

I think your GPs are fobbing you off. They could refer you to an orthopod - though I'm not quite clear, is this knee replacement or dealing with a Baker's cyst? Both are potentially surgeon territory and I was unaware rheumies were surgeons...

"Rheumatologists treat joint disease similar to orthopedists but do not perform surgeries. Common diseases treated by rheumatologists include osteoarthritis, gout, rheumatoid arthritis, chronic back pain, tendinitis, and lupus."

nhs.uk/conditions/bakers-cyst/

Hidden
Hidden in reply to PMRpro

Thanks... yes GP may be fobbing me off. I guess it makes sense if Rheumy's treat osteoarthritis.

Oh dear - how awful, especially when you've had to wait so long for the appointment. I think I'd have lost the plot - especially when confronted with the receptionist's indifference - that would really have bugged me. There would have been much weeping and wailing if I was in that situation. 😡😖😭

Hopefully you will be treated as a priority for new appointment.

Hidden
Hidden in reply to MhairiP

Thank you. From your mouth to God's ears!

You handled it better than I— runny nose and all. I don't think I would have behaved well. In fact, they might have had to call security!

Hidden
Hidden in reply to Canygirl61

Hahahahahahahaha. Good for you! Thank you!

How absolutely infuriating Melissa. Did they at least book you an appointment there and then and say they would contact you if there were cancellations? Of course no letter was sent.

Really sorry. I can just imagine how I’d feel. You had so much to deal with.

The tapering you can clearly do wow, well done!! 🌺

Hidden
Hidden in reply to SheffieldJane

Hi Lovely, Thank you... No, I left too quickly. I need to call tomorrow and sort it all out. I knew if I stayed any longer I'd either be hysterical or YELLING! So I high tailed it out of there.

Lady Bracknell “ not to inform one patient may be regarded as misfortune, but not to inform five looks like carelessness”.

Apologies to Oscar Wilde.

HeronNS
HeronNS in reply to Marymon

And who knows how many more people showed up later in the day....

Marymon
Marymon in reply to HeronNS

Wonder if it dawned on receptionist what a ****, (think of a four letter word of choice) she was by repeating what was not even an apology, blaming patient for a letter that obviously was never sent.

HeronNS
HeronNS in reply to Marymon

I know, it's appalling.

Hidden
Hidden in reply to Marymon

She'd try to apologise but then follow it up with, "... we sent you a letter."

Hidden
Hidden in reply to HeronNS

Right????

Hidden
Hidden in reply to Marymon

Hahahahahaha. Had to look up Lady Bracknell, but YES, the (almost) perfect quote!!!!!

Thank you

Marymon
Marymon in reply to Hidden

Poetic licence, my dear girl.

Seriously though, I felt the outrage of the others.

P.s You really must remember to keep a hanky tucked in your knickers. Although, maybe you didn’t wear ‘gym’ knickers at school on the other side of The Atlantic, or too young???!!!

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.

AndrewT

Hidden
Hidden in reply to AndrewT

Thank you Andrew. Yes, absolutely! I would bet the Consultant has no idea! All this was decided back in April... cancel "old people" clinic and replace it with an "under 25" clinic. The Rheumy does not care who she's seeing! Thank you for tips... I will see how far I can tip the boat tomorrow, without actually tipping it over!!!! Cheers

Bamber99
Bamber99 in reply to AndrewT

Hi Andrew / Melissa To add to Andrews comment, look up the consultants private practice address and send your letter there. It’s more likely to get to her. I’d have no confidence in it getting to her if sent via the NHS address

AndrewT
AndrewT in reply to Bamber99

A, VERY good, thought Bamber I hadn't thought of that.

Are you allowed to hobble into the emergency department as you aren't being properly cared for otherwise? Or would they just send you back to the GP?

Hidden
Hidden in reply to HeronNS

You know I did wonder that! My knee was bad before I fell on it at the Billy Joel concert, but since then it is much worse.... The Baker's cyst is a lot worse too! ...but GP's office keep saying, "nope not us." Orthopaedic surgeon, wants only to replace the knee joint... but I did wonder if I went to A&E and said, "... my knee really hurts!" What would they do???

HeronNS
HeronNS in reply to Hidden

Do it, do it! And good luck!

Chrob
Chrob in reply to HeronNS

I was thinking along those lines. Or taking up residence in gp practice.

PMRpro
PMRproAmbassador in reply to Hidden

Sorry - tell you to see your GP for urgent referral I'm afraid. Not life-threatening. Though you might get an appointment for the knee clinic in some hospitals.

So sorry that you have been so badly let down,you had obviously been waiting for this appointment and it is no wonder that you are so upset mamici.l hope that you will not have to wait too long for another appointment.

Hidden
Hidden in reply to Grants148

Thank you Grants148, appreciate that!

Mamici,

The good news is you are at 22.5mg of Prednisone. Well done! I will refrain from commenting on Doctors Offices, too depressing.

Hidden
Hidden in reply to enan-illuc

YES! Yes it is!!! Wooooo Hooooo

I was waiting till I got to 20.0mg to tell all of my friends here on HealthUnlocked!

Although I am in the States, my rheumy appointments are scheduled 3-4 months out.

I always call to confirm the month before, then 2 weeks before, than 1 week before, then at the beginning of the week, then the day before.

The only time this didn't work was when my rheumy was out with the flu. They called while I was going up in the elevator, I moaned and groaned and cried until the receptionist made her partner see me.

Hidden
Hidden in reply to GOOD_GRIEF

Wow! Good on you... very proactive! The thing here is you don't get to actually "make" your appointment. You're sent a letter and told when your appointment is, you don't get to choose. ...but still there is a method to your madness!!!! I like it!

Suet3942
Suet3942 in reply to Hidden

Hi Melissa. It sucks doesn’t it?. Sometimes I get 3 letters confirming the same appointment! Several of my friends have had that too. I cancelled an mri scan for my back in early September because I would be on holiday. Yesterday I phoned the hospital because I hadn’t had a new appointment and was told they had taken me off their list because I was a “ no show”. Wish I had taken the persons name because I could tell they didn’t believe me. Hope you don’t have to wait too long for a new appointment. Get on the case tomorrow and complain loud and long!! 🌸

Hidden
Hidden in reply to Suet3942

OMG! I hate that "no show," policy... I looked at my records when I worked at the RSCH and I had TWO "no shows" on my records... I have NEVER not shown up for an appointment. I tried to get the doctor's receptionist to correct and she thought it was no bog deal and said it happened all the time.. not to worry about it! 😳

Suet3942
Suet3942 in reply to Hidden

You couldn’t make it up!!

Melissa, I feel just awful for you. It's obvious they aren't telling you the truth as 5 cancellations in one day is a sure sign of the cancellations never been sent. Best wishes and good luck.

Hidden
Hidden in reply to Patience47

I know right? I think she even realised how silly it sounded... That's why she wanted me gone, before I figure out it was all a ruse!!!!

Hidden
Hidden

Good advice before Mel. PALS is the way with this one. Sometimes admin. needs a kick up the arse! It is rarely the person fronting the desk! Sure most of us have had this one or something similar! Well done for not smacking someone! It can be a close issue! Sweet dreams.

Hidden
Hidden in reply to Hidden

Yup, "smacking," (aka raising my voice) would have been my normal reaction! Today, I went down a different path... Who knows why? Sweet dreams back at ya! xxx

PS - Watch those shins!!!!!

Hidden
Hidden in reply to Hidden

I'm looking at them right now!!

Hidden
Hidden in reply to Hidden

🤣🤣🤣

Dear Melissa

Well THAT WAS 'inappropriate' in the WORST way and NOT 'HAPPY-MAKING" at all !!! I am so sorry you had that total 'anticlimax' in terms of feeling you could make some 'progress' with your treatments at least. It all sounds so ARROGANT and insensitive - I hope they send you a HUGE 'apology' letter and take some responsibility !!!! And what's more you should get another appointment really soon ('or else') !@!!

XXXXX

Hidden
Hidden in reply to Rimmy

Thanks Rimmy... it was actually quite funny I was able to "tag" onto your post, in an opposite way! ; )

xxxx

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.

Hidden
Hidden in reply to Marijo1951

Wow Marilo1951, That is incredible! I cant believe you got in yesterday! Good on you for your perseverance! Yes, had I know I would have called and made a new appointment! Res assured I will be calling TODAY! : )

I forgot to add that I endorse the advice to get in touch with the hospital PALS. A friend of mine is dealing with PALS at the Royal London Hospital about a problem she had there and, so far, they have been very sympathetic and efficient.

Hidden
Hidden in reply to Marijo1951

They are on my list of calls! ; )

What an utter disgrace I am so sorry you had to put up with this debacle ,and to have to anticipate it all again .This a serious duty of care breach ,all those people ,you included who had made the effort to get there all because some one didn't do their job .If you had to take a taxi I would request re imbursement not for the money but the principle .This is totally unnaceptable .I am really angry for you .Do they have a pals dept there ,contact them with a complaint ,you won't be the only one .

Hidden
Hidden in reply to patriciawhite

Thanks patriciawhite, I feel your emotion... it did totally suck! I will be calling PALS and a few others today to complain and try to get my appointment rebooked. Cheers

Yellowbluebell
YellowbluebellAmbassador

I would have behaved a great deal worse than you did and can only be awed by your reaction to such terrible news. I would still be lying on the floor refusing to go home ( 3 year old tantrum behaviour!!). I would be tempted to turn up at A&E asand see how they do.

Hidden
Hidden

It might be worth a try.... what's the worst that can happen? I do love A&E it's like watching a soap opera!

HeronNS
HeronNS in reply to Hidden

We have a tv channel called "Arts & Entertainment"!

I hope you’ve sent a letter of complaint already? Presumably the letters that were clearly not sent, had an alternative appointment in them?

Good luck S x🤐🤐🤐

Hidden
Hidden in reply to Bamber99

Hi Sue! I was too busy feeling sorry for my self yesterday... but I'm back on target today! Phone calls and letters in my immediate future! Hope you are well! xxx

Bamber99
Bamber99 in reply to Hidden

Yes thanks, getting on ok. Last day of Norfolk holiday today, off home this morning . Maybe we can meet up near you soon. I’ll drop you a mail. I went to the Surrey support group a couple of weeks back. S x

Hidden
Hidden in reply to Bamber99

Yes, do and yes, let's!

Wow mam, you have a lot of sympathisers. Was this all on the NHS ? It`s time, very much time, to send a LETTER OF COMPLAINT to the Hospital Manager ( who`s wage is astronomical ) Keep a copy in case you need to sue.

Hidden
Hidden in reply to Oldman-1

Yes, I guess this resonates with a lot of people, because everyone knows it can happen to them! And yes it was on the NHS. I had seen Rheumy a few times privately, but when I realised it was a long term relationship I asked GP to refer me... the appointment people were nice enough to let me stay with her! ...but boy I was treated so differently as a private patient! 😧 The difference is amazing! ...but I did pay through the teeth for it, too. Letter to be drafted today! Thanks OM. Xxx

HeronNS
HeronNS in reply to Hidden

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....?

Yellowbluebell
YellowbluebellAmbassador

I worked for the nhs in legal (the step after PALS and basically the step when the CEO gets involved.) Try phoning the secretary to the CEO as they tend to get things done so that the CEO doesn’t get to hear about how their hospital is failing!! Won’t do any harm and you might just get somewhere

Hidden
Hidden in reply to Yellowbluebell

Cheers! Look out... crazy American lady on a mission coming through!

teesher
teesher in reply to Hidden

PA's/secretaries have a lot of power. Go for it.

Yellowbluebell
YellowbluebellAmbassador

Go girl!!

O no mamici , in your words wtf , these people make me mad ,it’s not bad enough that you have to travel there in pain , but to be told that you can’t be seen is so not good, so sorry for you .did they give you another appointment ?? You stay strong 🙏🏽

Hidden
Hidden in reply to Monkeymate

Thanks MM, I left to soon to as the important questions, like "when can she see me?" ...but I will be calling in 29 minutes! 🙃

I am so sorry you had such bad luck with the appointment but tickled pink you are managing to come down in prednisone dose. I was thinking along the same lines as others and wondering if you went to A&E and said “ help” I can’t walk well and I been fobbed off for younger patients!!!

It does not bode well for me as I too and seeing a Dr Jordan but here in New Zealand in 2 weeks!!! I hope she’s available for this oldie. All the best with your next move to make your feelings known and for obtaining relief to you painful knee.

Hidden
Hidden in reply to Janicep

Thank you. YES! I am managing to reduce the PRED!!!! Ha, I hope your Dr Jordan's staff are more competent than mine!!!! Good luck to you!

Oh Mamici1. I feel so angry and disgusted for you. You behaved far better than I would.

This is when we have to say that our NHS really lets us down,

Do so hope you can get an appointment very soon

I wish you well x

Hidden
Hidden in reply to Jeannie29

Thank you... The NHS are FABULOUS, but occasionally human error messes up everything... : (

Oh no - yes I actually feel your shocking disappointment!!!! That feeling like when the bank machine in the wall takes your card - you see it going and you just can't do a thing about it!!!! Nothing is going to change it!! Oh best wishes!!!

Hidden
Hidden in reply to powerwalk

Thank you, I was totally disappointed, dejected, distraught... but it's a NEW DAY! Cheers.

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!

Hidden
Hidden in reply to MamaBeagle

Thanks MamaBeagle. Seriously??? What is up with Rheumy's and knees???? My Ortho Surgeon wont touch it, the GP won't touch it.... WFT?

MamaBeagle
MamaBeagle in reply to Hidden

WTF Indeed??? Passing the buck or what? Perhaps the question to ask each of them is WHY??? What is the problem with my knees? Does everyone who comes to you with this problem get the same hands off treatment? Wouldn't you just like to get them all together in the same room and bang their heads together! And give each of their knees a good whack with a rolling pin....the hardest and most accessible implement I easy to conceal and get past metal detectors I can think of! And then ask them how they are going to feel when nobody will treat them??

So sorry you had this experience. I'm still fuming on behalf of a friend, who is wheelchair bound and had her appointment for a serious operation cancelled at 4.30pm on the previous day. Wheelchair taxi was booked, all arrangements made for an anticipated week in hospital ,not to mention the mental preparation everybody makes. She was given only a provisional date as replacement and this was nearly a month ahead. She continues to be in excruciating pain.

Hidden
Hidden in reply to maria40

Unbelievable!!!!! How incredibly insensitive and unfair!!! I feel bad complaining, as at least I'm hobbling around... I hope your friend gets sorted soon!!!!!

So sorry. One despairs of administrators. They pay peanuts and get monkeys. No one seems to care when mistakes are made.

I was surprised by a phone call from a sister at the private hospital under NHS funding where I had my second hip replacement 10 days ago, to ask how I was! Made me feel special. Glad to say doing well, tho can't wait for 14 days to pass and the end of total rest ( my surgeon worried that first hip replacement from May 18 was not ready to take full strain according to XRays) as a bit of cabin fever.

Did you get a rebook?

Hidden
Hidden in reply to Valnvaughan

Wow, impressive! I am hoping that if I get knee done under NHS (I may just go private) that they will send me to the Montifiore... many NHS people end up there, because RSCH cant manage the load. How is your hip? How are you feeling? I hope you are up and around very soon!!!!!

Valnvaughan
Valnvaughan in reply to Hidden

Recovery on target still difficult to move. GP looked really worried when I arrived in wheelchair yesterday! Reviewed meds prescribed in hospital and hers and agreed forward plan, including my deciding when / how much to reduce Pred (3 and 1/2 yrs on ). On 2.5 for a month now over surgery......so many painkillers can't tell what's what! She still pushed me to take antidepressants I said NO, I am frustrated, angry and emotional.......I would recognise depression from 2 bouts in 90s.

Must manage on my own this morning.....Hubbie on respite golf!

Take care.....as I said use 111 for a route in to get knee seen to.

🚩🔜🏥 And here's to No💊 Valerie

Hidden
Hidden in reply to Valnvaughan

Just saw this note... Hope you managed with Hubby!!!! ..and yes, may do the 111 route! Cheers!!!!

Only someone chronically ill really understand how important these Dr appointments can be for us. I feel like everyday day I am looking for some kind of answer about what to do with my body. Is my pain .....activity... Withdrawal... Not enough meds.... Soreness from doing too much... Something else entirely.. Not doing enough?? Who knows?????? Hope you can quickly get some answers. 😘

Hidden
Hidden in reply to bunnymom

Yup... being chronically ill gives you a totally different perspective on everything healthcare related!!!! ...and yes, everyday is a new lesson! Hang in there Bunnymom!

What a bummer for you. I can’t believe you were treated so poorly. You must complain to the proper people. Keep your calm and carry on and hope your knee gets attended to. Wishing you luck.

Hidden
Hidden in reply to Maggiemudshark

Thank you! Better today... Hope you are feeling well!

Really, really pissy. Sorry you've had such a crappy day Melissa.

Hidden
Hidden in reply to Mike1964

Cheers Mike1964! I guess we have to have crappy days to make us appreciate the good days! ; )

That is just the pits and what a terrible way to treat a patient. What is it with the NHS insisting on using snailmail for important things like appointments and cancellations. An email plus text would be much safer/quicker and cheaper. And post often goes missing too (so much for data protection). It drives me mad. So sorry you had a rotten day and you were so chipper and looking forward to moving forward! I hope you got another appointment. Bet you were really tempted to go barging in there demanding to be seen..

Hidden
Hidden in reply to teesher

I know, right teesher! Send me an email for goodness sake! And yes, if it were not for the snotty face... I would have barged in and demanded she see me that minute! I just couldn't get out of here quick enough! 🤧

So sorry this is AWFUL. How dare they do this to you. They should have squeezed you in!

Hidden
Hidden in reply to Stella3

Thank you... I guess it was obvious, I wasn't under 25! Hahahahahahaha

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!

Hidden
Hidden in reply to MartiFL

Thank MartiFL... Here, I think they are lucky to have an Admin!!!! Rheumy was happy to do it in April and she did a good job (draining and steroid gel), but it didn't help for long at all.. by June I was in pain again and the swelling came back. Thank for the congrats.. I'm going in the right direction!!!!

Lippy on... dry nose! 💋

While I am in the US it appears no one country has more incompetence than others when it comes to doctors not reading or being up to date, staff being compassionate and competent and following up. Since mid August I have seen it all and can honestly say I am blessed my rheumatologist is on my case. Thank God she is one of the good ones.

I am so sorry you had to go through that unacceptable cancellation- I hope you get put to the front of the line for the next appointment- you should - anything else is unacceptable.

Hidden
Hidden in reply to Mks9558

I think you are right... a lot of countries seem to be struggling. The world's population continues to become older and older... we insist on keeping people alive for longer and longer in hospitals, nursing homes and hospices, the strain to treat people becomes more difficult. I am happy to hear that YOU have one of the good ones. Hold onto her!!!!

Have just read this post after reading your most recent one. Appalling treatment!!

I too have had my October appointment moved to February, but at least I had a letter. Having not seen the consultant since April , I rang his secretary, stating I needed advice as to reducing my Pred. Been on 5 mg since April, had Synacthen test in the summer, results sent, no idea what they mean. Also told not to reduce without advice. She said she would email him and get him to ring me, could be 2 weeks, she added. No phone call at almost 3 weeks and now feel I have a flare of PMR starting!! Probably due to this stress!!

Glad you had a response from PALS etc.

Would seem this is all to common.

Hidden
Hidden

Oct to Feb.... wow that is totally unacceptable! See your story is typical and so very BAD!!!!!! You are basically just fending for yourself! That so sucks!!!!! CALL BACK! Be brave... give them what for! This is so wrong and unfair!!!!

"The squeaky wheel gets the oil". <<<< Be the squeaky wheel!!!!!!!

You may also like...