Hi, I had a letter today postponing my appt on July 22. I’m beyond furious! My meds aren’t working as they should and this was made to discuss changing over to something else. I’ve been in quite a bit of pain, especially at night, and already had 2 courses of steroids. What on earth am I supposed to do now? They said I’ll get another appt ‘in due course’, what does that mean? 6 weeks? 6 months?
Phone call tomorrow I’m thinking 🤔
Definitely a phone call. I had an similar letter and asked them nicely ... what’s your ... in due course? Good luck. 🤞🏻
I’m so angry! I don’t want to be on steroids. Wtf ammonia supposed to do now?
I don't blame you for being angry. Definitely give them a call. If your meds are not working they need to change things for you. Corona virus has made a mess of things. Hope you get seen soon.
You could try asking your GP to write/speak to them? It’s often a slow process .. 😑 the lead up to another med and every day seems like a week waiting to get started on a new med. I would tell your rheumy nurse you’re in a lot of pain and would like some idea of their .. in due course .. for another appointment as the RA is breaking through the steroids.
They know all this, I had a telephone consultation with the pharmacist and she could see things weren’t working out and I’ve been struggling for a few months now. It seems they just arbitrarily cancel appts without considering individual need. They said it’s due to Covid but in what respect? The letter was incredibly general and lacking in any detail.
I’m so mad 😠
Sorry I can’t think of anything else but keep leaving a message on the helpline and hope they get back to you. Are you able to email the rheumy secretary? Can only think that the backlog of appointments is still so busy. My rheumy disappeared off for best part of a year to work on the frontline from March 2020 so her clinic appointments were over a year behind. I waited 17 months to speak to her but I had been for my infusion and spoken to nurses on the phone so not the same as waiting for a new med, but that’s the reason why my rheumy was so far behind ... She wasn’t working in rheumatology. Then on her return a huge backlog of patients to speak to.
It’s just awful at the moment, took me weeks to get anywhere re the pain I was in. There are so many gatekeepers. There’s a number to call if you want to speak to someone. Failing that I’ll call the rheumy team.
Sx
I know how hard it is as I’ve been there in horrible pain waiting too, and won’t say any more as I want to be positive for you. 💗 It’s hard to fight for what you want when you feel so unwell and full of aches and pains, but try gather all your strength to keep at them and phone and prod them politely at first, then a bit harder if they don’t seem to be moving on your case. Do keep a note of all the contact you have with the rheumy department and what was said and decided etc. Then it’s always clear in your mind where you’re at.
I feel for you and hope you will get a response as to when you can expect to start the new med procedure and see someone whether it be nurse or rheumy.. You could at least be doing the pre-amble of any xray or tests you may need before you commence the new med. Sending you a gentle hug. x
I had this recently with injection clinic. It was explained to me that pre-covid they could have a busy clinic full of patients and staff. Now they can only have a third of patients in and out during the day as they have to adhere to covid restrictions. Like having a maximum number of staff per square meter and having only 4 people socially distance in the waiting room instead of twelve. I'm so desperate for an injection to the left of my occiput that I have started to "dry needle" the trigger point with the tip of a kitchen knife.
Yet tens of thousands can go and watch the footie. Madness!!
I hope you get the treatment you need and quickly.
So sorry to hear this, mi e to has been cancelled 3 times, currently now have to wait till the end of August. Yes I would ring the team tomorrow and explain your situation and ask for some advice. I'm lucky that currently I'm not in bad pain but if I was I would be ringing them up. I hope you get some help and your pain eases very soon. X
Thank you. I haven’t had a face to face appt for almost 2yrs. I’ll hopefully get some answers tomorrow 😳
2 years that's a long time not yo have been monitored. Definitely ring them tomorrow, good luck.
Hi, i havent had face to face since may 2019, had a phone consultation in april this yr and was told he wanted to see me within the month, 2mths on im still waiting! Whenever i phone i keep getting told im on the list. I understand its not been easy with covid but that doesnt help us. Hope you get appt soon.😊
A direct phone call to the rheumatology service tomorrow...Followed up by a letter/ email (tomorrow too) if no suitable appointment given. I always let whoever I am speaking too that a written complaint is on it's way.
Politeness to a fault too (not that you would not be).
So sorry to hear about your cancelled appointment. I know what it's like being on meds that don't work and hanging onto that hope of a new medication finally bringing some relief. Sometimes I don't think the medical professionals realize what that is like. You might want to give them a call and let them know that you are not doing well and need to deal with this soon.
Yes that’s what I intend to do. The letter tells me nothing. Hopefully I’ll get somewhere but I’m not holding my breath 🙄
I am so sorry to hear this and as for the words 'in due course' may as well be 'how long is a piece of string', as it's meaningless 'word salad.' Yes a phone call and as Mmrr has said put it in writing also as a back up. Let us know how you get on, take care xx
It’s pretty poor just sending a generic letter as others have said and I’m sorry to hear you have been treated in this way. I would definitely write a letter to your consultant with a copy to your GP. Say how much pain and suffering you have, lack of sleep etc and request an appointment as soon as possible.
Good luck!
I would definitely call. Don't be angry with them, they probably have hundreds like you all waiting. Just point out the level of pain and how much you are struggling. I haven't had a proper appointment for ages either but I have managed to speak to my consultant on the phone after I made several calls and had my medication reviewed. Don't give up!
Yes I’ll def compose myself! Things are hard for everyone at the moment so I’ll tread softly ☺️
I hope you manage to get to speak to someone on the Rheum team it's so frustrating and feels like going around in circles to get some help.
So sorry you are being treated so badly. I would definitely phone and be very insistent(a pain in the backside they call me) that this just won't do. PALS is a way of getting the heat up their backs, although not in your case because it takes a long time to filter through. I hope you get an appointment soon.
I know how you feel...I have had 3 appointments cancelled since January...last time was last week cancelling my appointment of 2 days after saying they would make another appointment soon and if I don't hear anything for a month to contact them...getting beyond a joke now !!!
It’s always worth making friends with the receptionist/secretary. Yes, I know this is devious but sometimes it is necessary. If you are in this kind of distress you must go to casualty. Your visit will get back to your general p and they will realise that you are not wasting their time. Never get angry. It gets you nowhere. Just be sincere. Get well soon. Con amore Bx
Get your rheumy nurse onside…if she understands how much pain you are in ….you are far more likely to get good advice & possibly a change of meds from your Rheumatologist.The appointment clerks you speak to probably have a hundred calls a day with this problem……..however they have no clinical expertise & can only allot appointments according to the instructions they are given…. so a quiet chat could bring about a solution a little bit faster.
Try not to get too angry….we are mostly in the same boat….too many patients & not enough doctors is not an ideal solution …but try to stay calm….that really could help your pain.
I'm sorry to hear that your appointment has been cancelled under the circumstances. However, I think that the appointment letters come from a clerk in the appointments department. That person will have no knowledge of your circumstances and will only know that the clinic that you were booked into has been cancelled and it's his/her job to send out cancellation letters. It's a standard letter. It often has to done (often at short notice) because the doctor who was due to take the clinic, is ill or on leave.
In order to have a personalised response you will have to contact the rheumatology secretary yourself. Not always an easy thing to do.
Appointment. What B****Y appointment??
Still waiting
First nurse appointment
Doctors appointment
What do pain management units do?
