Is it just me or is anyone else in the same situation and not seen there rheumatologist since Covid started in 2020 ... It has been over 3 years now and still not seen anyone face to face!!
Rheumy Appointments!!: Is it just me or is anyone else... - NRAS
Rheumy Appointments!!
Written by
gailboddy
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92 Replies
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No sorry. Around here it’s been normal so every six months for past two years.
Lucky you
Same here In edinburgh
That's appalling. Addenbrookes went back to face to face over a year ago. All the rheumy departments are under pressure but they should be prioritising people who haven't been seen since before covid.
That’s my hospital. I was seen in 2021but only because I emailed and asked. Been attending there since 2015 and in that time have only had bloods done once, hands x-rayed once, I’ve never been seen by my named consultant, mostly been seen by temporary doctors I never see again, I’ve no idea who my rheumy nurse is that’s if I’ve even got one and I’ve always been weighed and my height taken with my clothes on. I was due to be seen in the autumn but I’m not holding out for that.
I know that they are rushed off their feet and I’d say I’m pretty ok but I would hope they are seeing people who really need to be seen. I’m pretty confident that should I need to be seen then I will be. In the meantime I have my eyes checked and an OCT scan done every year because I’m taking hydroxychloroquine.
That's really bad. they should have x-rayed your hands to check for disease progression.
Yes, I know. I would have thought they would have done bloods more often too but my consultations were mostly - Get myself to the hospital clinic, get weighed, wait a while, then person I saw would ask how I was, I’d say I was ok then it was ‘Goodbye’.
Last time was horrible, we were both all masked up and I found it hard to hear what she was saying and I was muffled too, Like I say I’m sure if I really needed to see someone I could email the secretary and I’d be seen - eventually.
Addenbrookes is my hospital too and I’ve not had a rheumatology face to face appointment since December 2019. I haven’t had an Endocrinology face to face appointment since September 2019 and my next appointment in August 2024 has already been made and is still not face to face.
Sounds about right. September 2019 was my last ‘normal’ appointment. I saw them in 2021 (not 2022 as I said before ) but only because I requested it, I'm sure if I hadn’t I still wouldn’t have seen them. I’m not sure they have a lot of staff there at the moment.
4 yrs of phone calls. No face to face.
Nope every 6 months
I’ve had a mixture of phone calls or face to face. Had 2 short notice appointments, 1 in August the 2nd in October, due to having issues, both face to face. Also seen early in pandemic and had an mri done. Seems to be back to normal, except occasionally waiting a little longer between appointments, unless I contact with a concern.
Back to normal here too apart from longer between appointments - for which they have apologised. I think that you need to complain loudly!
Last saw my rheumy just before lockdown March 2020. Had a f2f scheduled for Nov 2022, it was cancelled twice, finally got a telephone consultation in July this year. It was helpful, as although my RA is in remission, and not causing problems, I had other issues with my legs, which I was able to discuss, and I was sent for knee x rays, and referred to a vascular surgeon ( still waiting for an appointment ) .
How did you manage to get into remission , how long did that take ?
I was put on a biologic ( Cimzia) + methotrexate after dmards had failed . I can't remember how long it took. I was lucky that it was the first biologic I took and it has worked for me. I have the occasional flare but I'm fortunate that it's been pretty stable.
I went into remission a year after diagnosis on triple therapy - MTX, hydroxy and Sulpha. And stayed that way for 8 years. It does happen!
We’ve been very lucky here, no real disruption to normal service at all. I’ve had face to face consultations every six month since Autumn 2020. I’m very grateful to have such an amazing rheumatology department.
Every 4 months for me and August in 2020 was my first one.
I've had one f2f - helpline is not good (only available 2 hours a day) I've just had scans on feet/ankles hands/wrists so hopefully early in the New Year I will get the call I'm waiting for
I've had routine appointments the past year.... although I've been very unwell. I still think at least one of those was my normal needing to be seen appointment.
I hadn't been seen for over 4 years so I filled in an online complaint form to PALS. An hour later I had an appointment for a month's time.
No issues here in North Wales . Appointment every 6 months
Yearly appointments with consultant rheumatologist, and in between that a six month appointment with a rheumatology nurse specialist. All face to face . And a helpline that replies within 24 hours or sooner for advice and help
That's what I was supposed to have. But since 2019 it hasn't happened.
Similar in the south
in my area there were 3 rheum consultants - 2 have retired and the 3rd is part time due to other responsibilities.
The lovely specialist nurses tell me that there were NO appropriate applications when the posts were advertised . Infusion suite nurses also in crisis staffwise
This situation is probably reflective of a nationwide problem.
Despite this I have had a good and responsive service-
Yep. I haven't seen or heard from rheumatology since COVID. Not even had blood taken . Good job I feel ok
What drugs are you on as no blood tests is very bad! You shoukd push to get that at least.
Sorry to hear this. Can I ask how you get your prescription for meds if you don’t have your bloods checked? My Rheumy team won’t prescribe if my bloods havnt been done. It sounds dangerous to me.
they also might assume if not heard from you all is ok I know this is not what should happen but in these times it might be the case. A call or PALS
Exactly the same as me. I have an appointment in a few weeks face to face though. Anxious about it but seems so strange as had RA since 2020 and never been seen
Hi, you need to chase that up. my RA is classed as severe, so I get seen every 6 months for hospital infusions, and see my consultant inbetween. be pushy and keep demanding an appointment. Good luck.
Phone consultations once a year.
I have been seen or had a telephone but I am on a biologic. I understand the guidelines are different ? If you are having problems give your nurse a ring. It could be a genuine error and you have been missed off.
Me too. My last face to face was in early 2019.
I had a five minutes phone call in May 2020.
Since then - nothing.
I tried to make contact twice by leaving a message on the answer phone, but didn't get any response.
I then wrote to them, snail mail. They sent me an appointment but I was away on holiday, so had to cancel it - again, using an answer phone!
I gave up, but I do feel completely let down. It's been difficult.
Yep, same here, I've not seen my Rheumy for 5 years now, I usually see a Rheumy nurse every 6 months.
I've had two face to face appointment's since Covid, very rarely see the Consultant now , it's normally a specialist Nurse. I've asked for a phone call from my Rheumatologist a few weeks ago..still waiting!
Last seen September 2021, but nothing since.
did take me
Did take me quite a while to actually have a face to face with consultant, did have phone calls but didn’t see a Rhuemy nurse for over 6 years 🤷♀️ saw her in the summer and when I told her she just laughed, glad she found it funny 😡😡😡
Its obvious she does not suffer with R A .
Well I was beginning to think it was just be but looking at these replies I can see its not .. Feel so alone in my RA journey!
I bet you do! It shouldn't be like this. Contact PALS or can you ring your Rheumatologists secretary 1st to see 8f that works. 8ve not had a problem seeing mine at all or the nurses. All the best. It's not an illness you should feel abandoned with. X
you cannot get hold of anyone , leave message and nothing , emailed my Rheumatologist secretary, I am waiting for a letter supporting my claim for PIP, even they don’t answer 😡 it’s so frustrating .
I am going to have to send my paperwork for PIP , without letters , again very frustrating and annoying , no one seems to care these days
Does your GP have a system where you can go online and look at your records and letters? They also get your letters from the hospital. May be worth giving the gp a ring. They can do you copied if the letters if not.
Never thought of that , thank you will look into it 🤞
sorry gailboddy my appointment has been the same three month blood work six month face to face nurse on the phone anytime- I feel very lucky 🍀 hope things improve in the new year.
I’ve not seen a rheumatologist since before Covid started. I saw rheumatologist nurse November 2023 who has since sent a letter telling me to stop taking Hydroxychloroquine, even though it’s working so well for me. I’m very sad about this 
I’m in Norfolk Uk. In letter from nurse she said that as hydroxychloroquine was controlling my symptoms so well, she was discharging me from the hospital care and then wrote to me to say stop taking hydroxychloroquine
Perhaps write to her asking her to clarify matters; is she discharging you to shared care with your GP (who will then prescribe hydroxychloroquine) , if not then how does she propose you maintain the control of symptoms hydroxy was providing.
Yes I agree with you, but the letter clearly states stop taking Hydroxychloroquine from March 2024, and that they are discharging me from their care. It doesn’t mentioned shared care with my GP and. I can’t see my GP wanting to prescribe it if the rheumatology nurse has stated Stop I have an appointment to see my GP on 5th January & I am going to ask if my GP will prescribe it, but I don’t think they will, especially as they got a copy of the same letter. I have drafted a letter to the Hospital Rheumatology nurse, I am just waiting to speak with my GP. Thank you for your response. Kind regards AlexAileen
iCant believe it
un believable.
Have you contacted your rheumy team to ask for a f2f appointment?
In most areas rheumy medics are so busy, I think they will presume if you don’t ask for an appointment you are getting along OK.
Until things settle down after the upheaval of Covid we will have to be proactive if we need help.
I have phoned every week day up until 24/12/2023. Just answering machine pre recorded message
Is your rheumy clinic close enough to go in to? Why not go in & explain your situation? Failing that you could telephone PALS …they are usually very helpful, sorting out problems like this.
Unfortunately these days it’s not much use reading the NHS guidelines for regularity of Rheumy check ups….so many rheumy staff were sidelined to Covid duties,& either didn’t return or they resigned.My consultant was telling me the other day that they are still short 26 consultants. …let alone the nurses.
Not close and PALS is shut until 3rd January
So set your alarm for early on 3 January…..write down what you want…get on the phone…& ask away. I really hope you get some success.
There is really nothing more you c an do….so forget it for the next few days.
Thank you 
At the tail end of lock down I had a telephone review with my consultant in April 2021 and i have had two face-to-face review appointments since. Last time I asked how often the reviews should be and he said every 6 months … but in reality it’s more like very 10 months. It’s a small hospital in Staffordshire.
I don’t know if there’s a recognised ‘industry’ standard for reviews but sounds like yours needs a kick up the backside!!
I have my first F2F with RA nurse in Jan. was told will never see Rheumatologist now as too busy seeing newly diagnosed people….unless of course go privately 😵💫
You should be able to see your consultant if you gave problem. Of you need to I would ask to be seen and complain to pal if you can't.
I saw one yesterday at the hospital. Waste of time I thought. Just pure guesswork. Asked me my symptoms from when diagnosed (it was 6 months ago so couldn't remember all of them) Told me I have cervical spondylosis (from an xray I insisted on) not a relapse of PMR. No blood tests or other investigations. Told me to come off Pred & ask GP for painkillers. I’ve been on Pred 6 months. GP says one thing, Rhuemy contradicts him?
Do you need to be seen? It does seem some places are not doing 6 monthly/yearly appointments if you’re stable on meds now, but will see you if your meds aren’t working etc. I haven’t been seen but have spoken to them on the phone if I needed help. If you are needing to be seen because of problems then contact PALS. They should be responding if you need help.
Normal service in North East. Every 3 months for me
Finally saw locum rheumatologist last month - first appointment since August 2020! Wasn’t very useful as the computer system had crashed so appointment was spent taking an oral history. Still nice to see a real rheumatologist
I do see nurse every six months - sometimes in person sometimes it is a phone call. This is a form filling exercise as she doesn’t answer questions!!! Refers me to gp if I have any 🤣🤣
Yes, same here about 2yrs, have bloods done at Gp's should prob give them a ring, but what with covid, strikes and new patients who knows.
Back to normal here at Royal Berkshire Hospital and I see rheumatologist nurse every 6mths to arrange my next biological infusion. I’ve also seen one of the Drs also. It’s not right that you’ve not been seen in your area x
One should not be prescribed meds such as eg methotrexate and biologic for those of you that don't get regular blood tests,as ra conditions needs regular monitoring.
You don’t say if you have needed to be seen? Have you requested a f2f appointment….if so, what transpired? As Aged Crone wisely counsels, you need to be proactive, otherwise the “remember to see this patient “ bell won’t ring in your Rheumy department!
I have not seen my consultant since covid too.Are you having problems?
• in reply toCheesechurch
I haven't seen mine but that's good news I'm thinking!
Well dodgy Knee, neck pain, can't sleep, aches all over not to mention WBC 3.9 Neutrophils 1.2 apart from that I'm fine 😅
Ive hand one phone consultation, and a very brief appointment with the nurse she couldnt save my problem said she would get me.an appointment with the consultant that's over a year ago,I'm still on the list to be seen.
I had zero face-to-face in canada 2020-2022 but face-to-face since then. My Czech rheumy always saw me in person regardless. I feel very fortunate💕
It's not great is it! I saw my consultant for the first time in 3 years a few weeks ago. I have though spoken to the RA nurse in between and seen her a couple of times. On the whole it has been enough to keep things under control. In my local hospital, where pre-covid there were 3 consultants covering clinics, we know have only one, who visits once a week. There is no-one on the staff who can prescribe meds when consultant not around.
Hi gailboddy
No, I've seen mine many times since Covid. I would contact them and see if you are able to have a face-to-face appointment. That's far too long not to see your rheumy. Don't accept anything less. Good luck. x
It varies enormously according to these replies. I thought I was badly off having a consultant who waved me goodbye saying 'see you next year' until I read how some are treated - or not treated. When I lived overseas I was seen every month with a blood test every two months.
I now have shared care with my GP. He agreed to increase my MTX from 7.5 to 10 mg because of a flare-up but I am not sure how much a GP is permitted to amend a prescription on shared care. I was stable and in remission when the GP originally agreed to shared care.
DMARD blood tests are every 3 months by GP unless there is a change when they increase to every month.
I’m the same. I’ve been seen once since Covid. I used to be seen every 4 months!
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