As I've mentioned before I have been having trouble getting my first rheumatologist appointment as it keeps getting cancelled, well today was the the day, I had an automated message this morning reminding me of my appointment on 9th Oct, I know nothing about an appointment for 9th October so rang them to be told my appointment today had been cancelled and moved to the 9th, I have had no letter or phone call to cancel today, she said it must have got lost in the post, I said it's not good enough, I was diagnosed with PMR and possible GCR on 2nd September and been on 40mg pred with horrible side effects for 4 weeks and still not seen anyone and also booked a days holiday to get to this appointment, she said she's only a receptionist and can only do what she is being told to do. I'm so angry and anyone that knows me knows it takes a lot to get me annoyed, I'm usually so laid back but I really feel like I'm being messed about, when I asked if there were any sooner appointments she said the next available date for the GCA clinic was December, it's ridiculous, there are only 3 of us that work in our shop and on the 9th one of the girls is off and might not be able to swap her day off with me, so God knows what I will do then. I'm sorry to moan but need to get it off my chest 😠
Just need to vent: As I've mentioned before I have... - PMRGCAuk
Just need to vent
It is absolutely infuriating and an example of how the NHS has been allowed to run down.
I have been having an awful job making myself understood about wanting my Pred prescription in 1 mg tablets to ease my tapering. It’s as if they think I am up to something. I finally made myself understood to a temporary pharmacist. Today I received 196,1 mg tablets which doesn’t make any sense but is a sort of victory. We just have to keep plugging away. Decisions seem to be being made at a pretty junior level.
At least you are safe on your 40 mgs and it’s a week away. I don’t know how you are managing to hold down a job at all. Good luck!
At least someone in your system has clocked that Pred comes in packets of 28. I pity the poor pharmacists having to cut up the blister packs to meet the requests for 100 or 50 tablets. I thought I had somebody somewhere who finally understood when I was prescribed 84 5mg tablets although something should have told me it wasn't totally OK when the number of 1mg (100 I think) wasn't enough to see me through the tapering. And sure enough when I happily asked for a top-up of 1mg recently - and very precisely asked for 4 x 28 x 1mg - what I got was 3 x 28 and 1 x 16 (= 100).
Aha - a light-bulb moment - maybe they have a rule about a maximum of 100 tablets of anything.
💡
Glad we're here to allow you to let off steam. You certainly have good reason to be mad. I hope you feel better for venting.
I'm with jane, all respect for managing to keep working.
Good luck to you.
I agree with you re the cancellations. Rubbish and infuriating.
That said I hope you didn't cancel the appointment. Your health is 100s times more important than any job of work. I would take a sick day to cover you as you are hopefully entitled to. You need to see a rheumatologist and have a diagnosis made ASAP so the treatment plan can be established. You don't want to be taking high dose steroids indefinitely. Fingers crossed this one isn't cancelled, you MUST go and sort out if you have what is a serious illness. Good luck! 🌻
I am sorry to hear that your rheumatology appointment has been cancelled at such short notice and I can really understand your frustration. After reading your post I happened to look at my mobile and saw that I had a new voicemail. It was a message from the hospital rheumatology department to let me know that my appointment in two weeks’ time has been cancelled, and that I can expect a letter in the post with details of a new appointment. This is the second time this follow-up appointment has been cancelled, as it was originally scheduled for August before being changed to October. It does make you wonder what is going on. However, I can understand that some appointments may have to be cancelled to fit in patients with newly diagnosed GCA/ PMR.
I hope your appointment on the 9th goes well.
On my FB feed from a site today there was an article about a young Chinese doctor who was brought up here as a small child and then returned home with her parents, coming back at age 14 and has been here since, training here and now working in a hospital She applied for her visa to be extended so she could continue working and got a letter back telling her she'd not had quite high enough an average balance in her bank (had to be £945 or thereabouts) at intervals over the past year and that meant her visa was declined, She was to leave immediately and not come back, if she did she'd be imprisoned. The Home Office is now having another think ...
That isn't an isolated story - apart from the stupidity, it leaves the hospital with a hole in their staffing and means cancelling OP appointments at the last minute
The same problems with my cleaning lady she is Hungarian, all her family have been accepted in the U.K. apart from her, she is being asked to fill in form after form and question after question and they are then being refused. Thinking about it I would prefer to lose my rheumie than my cleaning lady!
It's so annoying isn't it, all we want is to be seen and properly diagnosed.
So sorry , but it happens all the time.
I got a call like that last month , I called to point out that I had not had any notice previous , and also pointed out that , as it was cancelled on the day ( I was on the motorway half way to Liverpool at the time) , it had better show in my notes that this was because of a choice by the Clinic and not because I cancelled it as a Patient.
They blamed overlap , that the computer system can sometimes be ahead of a new letter but a day behind when the Clinic cancels your appointment the day before , as it only updates changes once every 24 hours and the cancellation might have happened after this , it does all the automated calls at once.
I did point out that if they know this they should not rely on the automatic system after a certain point in the day for cancellations that happen for an appointment under 24 hours away. They should call in person and save the Patient the possible Anxiety and added Fatigue of preparing for an appointment the following day .
The Automatic Reminder system may be a good idea but Automatic Cancellations are disgusting.
They did note my complaint , and that the appointment was cancelled by them in my written notes , because this was the third cancellation by them , and I didn't want them to use up my option to cancel .
As many Departments will only allow Patients to change their appointment date twice before they automatically discharge you to be re referred by your GP.
It's another one of those examples of the system being run in a way that works for the Service Provider and not the Patient.
Just to clarify, who is the "service provider"? The individual doctor or the faceless system which doesn't seem to take either patient or caregiver into account, at least from what I keep reading about on here?
The Man without a Face!!
Hides behind the moniker of "Central Booking" or "Choose and Book". Central booking is run by call handlers with no medical training. Choose and Book is an oxymoron - there is neither choice of hospital nor appointments available most of the time ..
That sounds awful. Let's hope our system looks to the NHS as a warning, not a model, as it attempts to bring runaway costs to heel.
They have brought in a sort of central booking for physiotherapy here - it is a nightmare. OH has had to wait a year for an appointment for assessment - never mind see a physio! He's not worried, he doesn't see a need but nevertheless ...
Physiotherapy is not really covered here, although I think if you are prepared to wait a year or two you might get an appointment with a hospital physiotherapist. I just need a referral from a doctor which I take to any physiotherapist of my choice and get partial coverage from our private insurance. Unlike the US we won't be beggared if we have to be hospitalized, and our appointments with doctors, including specialists, are covered by medicare. But unless you have private insurance pretty much nothing else is covered, except a few things like children's dental care, and for some reason my ophthalmologist is able to bill medicare for my appointments. Maybe because I remarked one time that if I didn't wear glasses I'd be considered visually disabled!
This is for something closely allied to his lung problems - but there is also a year wait to have an OP appointment with a chest physician in our town.
When I asked about physio after my broken leg there wasn't even a mention of the hospital physio, they knew it would be pointless and I didn't "need" it as much as many others would, just a written referral so that our insurance would give me partial coverage. The hospital physio is probably only used by people who can't afford private coverage and I understand the wait is atrocious. I can't imagine what it would be like if we didn't have the private option, and some of my friends do not have that option and have suffered greatly because of the wait. Years ago I was referred to some specialist, you know I can't remember what kind, maybe an orthopedic surgeon, because of hip problems. Well by the time I saw him about nine months later, and today that wait would likely be two years, I was better and physiotherapy had sorted out my problem! I was lucky. Had it been a "real" problem or had I been old then, I would have suffered all that time waiting. And then you have to wait another long time before you get the surgery.
I’m on a Focus group reviewing NHS admin and this is very helpful in expressing how random the ‘system’ is. Thanks!
Please raise the point of automated calls being almost indistinguishable from nuisance spam calls and foreign call centres that we are plagued with, or at least I am and I often ring off.
Good point. Will do
Tps your landline and use your mobile for hospitals. Mine comes up as hospital booking confirmation as I created a contact. That way I know who it is.
My mobile and I have an uneasy relationship devoid of trust. I neglected it so much it died and is currently being repaired somewhere. I really resent feeling tagged.
I just switch it off or end up leaving it in the car when I get fed up.
And for goodness sake explain to them that the UK mail service is not a service. I nearly ended up with a CCJ because a demand for rates payment hadn't arrived and nor had the first invitation to court! You cannot do what you don't know about and then you get blamed!
I'm on it!
I had that problem in the beginning. I was so furious that I changed rheumy's and had to wait an extra month but it was worth it. Vote with your feet. Surely with GCA you have to go to A&E. Sorry for your troubles - good to vent to this lovely group.
How bloody frustrating for you!!
I got a call from my GP’s office advising me that my 3-month appointment Oct 8 has to be changed as the doctor will be on vacation. When I tried to re-schedule the receptionist suggested Nov 12th!! Not acceptable I said as I had made my appt. 3 months ago and wasn’t prepared to wait another 6 weeks. So she “squeezed” me in Oct 15th, assuring me I have a 15 minute time slot for my appt.
I also found out why my yearly dexascan appointment was not set up after my last appointment (after one month, no appt scheduled).....because they have had turnover (more than once), of reception staff. No surprise as my xrays did not make it with my referral to an ortho surgeon I had waited to see for 5 months.
Seems that sometimes between “the healthcare system” and inept staff, the patient is left in a holding pattern for weeks/months. That’s why I am firm (but respectful), as I advocate for my health.
I do hope you FINALLY get in to see the rheumy on the 9th if that works with your schedule. Sorry to hear of the ill effects of your pred dose....hopefully your rheumy is worth waiting for (mine wasn’t), and that they can help you moving forward.
Vent anytime you need to....we get it.
I am in the same boat..... Except I am in the USA. I have been waiting on my Specialists appointment since July... Cant get in till Oct 31st. Sounds like the world has a huge shortage of Rheumy docs.
Absolutely correct!!!
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