Yesterday? Not Inappropriately Happy, but a Pret... - PMRGCAuk


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Yesterday? Not Inappropriately Happy, but a Pretty Good Day!


So, my first phone call of the day yesterday was to the Royal Sussex County Hospital (RSCH) PALS Department. A very nice, young woman, named Maria listened patiently, while I gave her the "brief" version of my sad story. When I was done, she apologised for my experience, and explained that I would have to put my compliant/story in writing or in an email. There was an official reason for this, but it was somehow lost in translation... No worries, I can put it in writing!

We talked for several more minutes and she asked me a few questions... she then suggested that I send the email to her attention (rather than just the generic PALS email address), apparently, something I said got her attention!

My second phone call was to the Rheumy’s secretary. First, try Voicemail; second try "BINGO!" She listened, but she wasn't as empathetic and authentic as Maria. She implied that Dr Jordan was not aware of this issue and that she {the secretary) would look into it to see what had gone wrong. I got the impression this was the first she had heard of this particular “cock up.”

She offered to try to get me a new appointment, and I jumped at the chance! I was pleasantly surprised when about an hour later the phone rang and it was her, offering me an appointment for next Wednesday, October 24th! I gratefully accepted!!! 👍🏻

I spent about 45 minutes documenting everything in an email and sent it off to Maria. I felt oddly vindicated; not that I had changed the course of history, but I certainly had shed some light on what was a very unfortunate and unfair situation for at least 6 people!

I’d like to thank all of you who reacted/responded to my post. I was overcome by your empathy. Thank you so very much!

It was obviously a very “sore subject” and one to which we could all relate. That feeling of helplessness and vulnerability; when you feel you’re at the mercy of the “powers that be,” and those powers are so much more capable than you.

I was surprised by reaction, standing there in front of the receptionist’s desk. Although I’m not entirely sure why? If I have learned anything in the last 340 days, since my PMR/GCA diagnosis, it is that I have NO CONTROL over anything, except MY REACTION TO EVERYTHING.

I, probably like you, feel that I'm at the mercy of my diseases; at the mercy of the doctors, GPs, Consultants and Phlebotomists. I’m told where to be and when to be there; and then, when I get there, I’m told I’m not supposed to be there! I’m poked, prodded, pondered and pitied. Just another “one in a million.” An insignificant statistic; faceless, if not totally invisible.

...but you know what? I may be old and I may be sick, but (like you) I still have a VOICE and I have more than an ounce of self respect and dignity left in these old bones.

I won’t be ignored and I won’t be trifled with. I will call them out! and I will demand respect.

As Howard Beale said in Network back in 1976... “I’m mad as hell and I’m not going to take this anymore. I'm a human being, god-dammit! My life has value!”

...and so does YOURS!

65 Replies

I have my long awaited rheumi appointment on the same day(24th)'ll be interesting to see who is more inappropriately happy or inappropriately frustrated afterwards.. hahaha.. I'll be looking forward to your story about the appointment.

Hidden in reply to Gaijin

And I will be looking forward to your update! Good luck !

Whatever happens... be mad as hell and don't take it! : )

Pipalina in reply to Gaijin

Hello Gaijin - hope your appointment goes well. I wish you well & please keep me updated - Kathy x

Well said mamici !

Hidden in reply to Grants148



Well done Melissa, some satisfaction in those outcomes. Keep up the pressure!

Hidden in reply to Hidden

Will do... you watch those shins! ...and head, and everything else!

Hidden in reply to Hidden

Shin shin!!..... Still watching em...! Have to be careful not to walk into something! All this multi-tasking giving me a headache!

Hidden in reply to Hidden

Really! I am constantly consciously navigating myself around tables, chairs, walls, etc. trying to avoid banging myself and getting those nasty blood bruises... It's exhausting!

My hands are soar with clapping, 👏👏👏👏👏👏, arm and fist would be in the air if I could, a la mode!!!✊✊✊

You have won the first round, go for it. So difficult to do when you are in pain, ‘They’ need to walk in the patient’s shoes.

They don’t know who is coming for them.

A very articulate, tenacious lady, honed on pain.with her dedicated army behind her.

Great admiration for you as it takes

a lot of spoons.

Hidden in reply to Marymon

Awe... THANKS! It was all of YOU here on this site that inspired me and gave me the strength to "kick ass and take names." And YOU are right, we are an ARMY! They should not trifle with of us!!!! They should be afraid... very, very afraid!

Marymon in reply to Hidden

We are here polishing our shields.

I had to point something out to Dr. receptionist and a woman behind me whispered ‘ I wish I had said that’, I replied she was the patient/ customer, and they were all here because of her.

Well done mamic1. Methinks that they will take notice of your complaint and who knows it may help others. Someone is responsible for the cock up and the needs a rollicking.

I've had cause to submit complaints to the NHS on more occasions than I would have liked and each time I received a full written apology and in some cases a personal one.

Hidden in reply to Primarose

Thank you! Hmmm? That is cool. They don't just throw them in a drawer! You are right, it may help in the future... so it doesn't happen again.

Hidden in reply to Hidden

Once it’s in writing there is a process & it has to be followed through. Med Sec is always the best bet for a sooner OPA (Appointment) except if you dealt with me (back in the day) l’d have got you seen one way or another & made you a cuppa tea into the bargain!

Anyway, you have your appointment now, so hopefully you’ll feel better & can relax a little over the weekend!

Take Care

Angela xx

Hidden in reply to Hidden

Awe... I bet you were lovely and compassionate!!!!! Yup... relaxing. Hope you are well!

Hidden in reply to Hidden

As l say ‘I’m not too Sparkling at the moment!’ Plenty of Rest & No Stress & following all my own advice for a change!......

Have a good weekend xxx

Wonderful! I hope the Rheumy gives you all her attention on Wednesday - by then, she will have heard the full story, no doubt!

I'm sure you will let us know the response to your written complaint.

Hope you have a restful weekend after this awful week. x

Hidden in reply to Rugger

Thanks Rugger! Appreciate it... I hope you have a FAB weekend, pain free, restful and relaxing! xx

Glad to hear your news...….my blood pressure has gone down now!.....

Hidden in reply to Longtimer

Thank goodness!!!!!!

Hi mamici1, read this post then had to go back and read the previous one, which I hadn't seen!!! What a horrible c''k up with your appointment, but good on you for contacting PALS. They can be really good, I had dealings with them a few years ago over my Mum. I'm so glad you got an appointment quickly and well done you for being 'mad as hell!!' I worked in the NHS too and I used to tell people if they weren't happy, to complain. I know we don't like to complain much, but if we don't then nothing will change. Good luck with everything.

Hidden in reply to altywhite

Thanks altywhite! I'm American so complaining comes quite naturally to me 🤣, but I do love the NHS and know that everyone is doing there very best. However, mistakes do happen and when they do people just have to step up and own them. The woman telling me )more than once) I was sent a letter was not helpful! Especially since I and at least 5 others did not receive it! : (

altywhite in reply to Hidden


It sounds like it's all going in the right direction now, but only because of your strength and tenacity. Well done. I know how much it must have taken to do what you did and I applaud you 👏👏👏.

Most of us on here probably wouldn't have thought twice about such a complaint etc before PMR, but now it's sooo exhausting that it would be easier to give up. But not you! You are our heroine, leading us all 👸🏻, showing us that it can be done. Now have a long, long rest. You so deserve it.😴

Hidden in reply to Footfairy-1

Awe, thank you Footfairy, but really if I did good, it's only because of everyone's support and brilliant ideas and suggestions! And me a heroine??? I don't know about that! I'm the one who cried and hightailed it outta there!!!! 😪 Normally I would have ranted and raved (to no avail, I'm sure) but she would have known I was not a happy camper... yesterday was an odd day. I could respond with only tears and snot! Hahahahahahahahaha

Footfairy-1 in reply to Hidden

A girls gotta do what a girls gotta do! Tears, snot and all hahaha

Hidden in reply to Footfairy-1

True dat!

I am wondering if that is your stack of medical files in the charming picture lol?

Hidden in reply to bunnymom

🤣 probably, and when she hangs up the phone, she will light them on fire!

bunnymom in reply to Hidden

Ha ha that's my laugh of the morning.

glad to read you acted combative. And in the future it won't be necessary I hope, you placed yourself on the map as a person you can't ignore. Well done.

Hidden in reply to Zofitmogelijk

Ha! ...well, yes! Of Course. After bursting into tears and wiping my nose with the back of my hand which I'm sure she could not ignore! 😳

Zofitmogelijk in reply to Hidden

schnee von gestern ( water under the bridge )

Thank you for the shot in the arm. Wish I had your energy and lucidity right now. Am soooo depressed after most disappointting neurologist and rheumatologist appointments this week. I want to cry. A B12 shot or a dose of your prose the best prescription? JoA

Hidden in reply to Joaclp

Ohhhhh noooooo! What's the story Morning Glory? What did they have to say that has you so glum? Better out then in... we need to see a pist from you! Or did I miss it?

Well done mamici1 🥂

Hidden in reply to EdithWales

Cheers EdithWales! I made it through... : )

Good on you girl - give 'em hell - I've got my 6 monthly with Rheumie the following day to you - hope it's not cancelled!!!

Hidden in reply to Telian

For their sake... I hope not too!!! 😳

Good going Melissa

Hidden in reply to Patience47

Thank you Patience 47! : )

Well done to you - it's a very satisfying (and often too rare) feeling when you realise you have actually been listened to and treated respectfully.

I sort of expected that you'd be back in the queue for another appointment goodness knows when so you being offered one for next week is a total surprise and as you say - to be gratefully accepted.

I've had a bit of a tottering day myself today so it's cheered me to hear you've made good progress after your bloody awful

Hidden in reply to Pipalina

Awe.... thank Pi'm sorry to hear that your had a tottering day... I'm happy my news cheered you a little! I hope tomorrow is MUCH better for you! : )

I am so pleased that you got hold of the right people and got a quick , new appointment.

I was thinking of you and was going to suggest your call the secretary about it but thought you would be on the ball with that.

Unfortunately, it is a thing I have experienced a few times myself, and happens far too regularly to many people I talk to locally and read from on this site.

They make changes, to appointments or staff , and then don't bother to tell the patient , or make the change and think it is fine to leave you hanging until another appointment becomes available.

Nobody thinks , or seems to care , about how their changes affect the health of the patient.

Most importantly, nobody in appointments checks the medical need of the patients who have their appointments cancelled , so do not know if the patients or often the specialist importantly required for you to be seen by a certain date as part of ongoing treatment.

The only way I have found over the years is to bypass the appointment or department reception with these issues and speak to the Consultants Secretary myself, it is them that keep the system on the ball , and don't allow the list makers put you at the back of the queue.

Please do also put in a complaint via the conventional complaints system as well association email to Maria, it is very good that she has seen something which she will hopefully address immediately, but you don't want this issue to be dealt with but not potentially put through ( and data registered) the official channels.

It is this marked complaint that shows up in the official figures and is seen by authorities that monitor your hospital outside the hospital itself. And , unfortunately, they only really care about the views of their official assessors rather than their patients.

Good luck, I hope this new appointment has given you the peace of mind this weeks situation took away from you and you can enjoy your weekend.

And keep , keeping them on the ball.

You are so right. PALS is the support service for patients. You still have to make a complaint to the NHS service provider. ( used to help people with this as a CA adviser) Valerie


You're 100% correct Blearyeyed!!! I get that sometimes changes need to be made, but I'm sure they did not have a clue as to the current health situation of those of us that had our appointment cancelled! They had NO IDEA that I have been hobbling around for months, unable to walk, because my knee is so filled with fluid! And that I was counting o this appointment! I may take your suggestion onboard.. as it should up in the "official figures" and seen by the authorities. Thanks for explaining that.. I will provide update next week, thank you!!!!

Hidden in reply to Hidden

Yes, they are quick enough to point out how many Patients failed to keep their Appointments (DNA) in the previous week/month & how much that costs the NHS!....

Valnvaughan in reply to Hidden


Read my reply to Blearyeyed. Valerie

I've been in tears at many an appointment. Used to care. Not so much any more. You are such an articulate writer I am sure they will be paying attention to your letter. Well done!

How wonderful your follow up paid off in so many ways! Advocating for yourself is one of the most important factors as we navigate the healthcare waters. Although it may be time consuming and/or intimidating, it lets “them” know that you are a patient deserving of professional, effective support.

You are an inspiration for us all....keep having a voice for yourself and others!

P.S. I just responded to an earlier message prior to reading this latest post. Thrilled you got an appointment for next Thursday. Do let us know how you make out.


Well done you!! Do not let anyone get you down.c

well done you Melissa, I think what happened over your cancelled appointment was outrageous and deeply upsetting particularly when you are feeling so vulnerable and fragile, and hope you get a satisfactory response to your letter of complaint. Good luck next week.

How are you doing health-wise, I think you are nearly a year in since you were diagnosed, I'm sure it has felt like a very long, life changing twelve months - love your upfront posts, they always make me laugh!

I wonder what's happening to the other 5 patients? We are being brain washed into thinking the NHS is under so much pressure we are far to quick to accept poor service. The NHS system would be as good as it used to be if inefficiency, corruption and just plain greed of people using and working for the system could be weeded out which I'm afraid includes doctors and consultants. We do not get free health care, we pay for it through out taxes and deserve better treatment. I am a complainer though I must say tears have worked better than letters sometimes.

piglette in reply to ChrisMcT

A decent computer system would help too.

Well done Melissa! I hope it goes well when you finally get there!

Go for it ! If no one complains ,and you are certainly valid to do so .Then they think everything is fine ,or at least can pretend they do . If we don,t right the wrongs they stay wrong . You have been miss treated and dismissed by a'' failure in the system '' . Which in old fashioned terms is simply lax and poor service . What is the system ? Lessons will be learned ? The system is them doing their job properly that's all we expect .Not a lot to ask is it ? Shout about it good for you ! I hope you get some satisfaction what ever form it takes .

Well done 😊👍🤗

After all the effort it takes to get to a hosp no wonder you are cross. Thought the last couple of paragraphs were wonderful re "but you know what". After constantly being told I must accept how old I am (86) I have seen a new Rheumy who never mentioned my age. Taken me a long time in this journey to stand my ground!

You have done well getting hold of the Secretary. When I have rung it is always the answer machine. Then it seems to be ignored and the call is not returned or by someone who is not the Secretary.

Hope all goes well Wednesday Melissa. Up the polymylingerers!!! 😊😊

Hadn't read your first post so didn't know the problem which was an appalling mismanagement exercise. Well done for pulling it all together the next day with a result. Glad that it was you that wrote the letter and hopefully now the appropriate action will be taken. Maybe it won't happen again!! - wishful thinking!! Xx

Well done Melissa for not taking this lying down. I haven’t had the very horrible experience you suffered with the, unbeknown to you, cancelled appointment but I have sat in the GPs office with a very bored, uninterested and disdainful GP. I now don’t go unless I really do have to. Five years ago I went to see my GP to ask why I was getting so breathless all the time. I was ignored. I went again three years ago to report the same symptoms. I was ignored. Two months ago I went to the practice nurse, a review for the PMR. I mentioned these symptoms to her. She asked me how long had I been experiencing these symptoms. When I told her, her reaction was “Why have you not told us this before”. She booked appointments for me to have certain tests done ASAP. Needless to say, in August I was diagnosed with COPD and am now being treated for that. You really could not make it up, unless that is you were writing a comedy farce.

Keep well, good luck for Wed, I hope you get all your questions answered.

You go girl!

Hurrah! For you on behalf of all us. Empowering. 👏👏👏👏👏👏

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