I last saw my Rheumatologist on 8th December 2021. My next appointment has been rescheduled and then cancelled 7 times . My next rescheduled appointment is on 22nd March 2023. This cannot be right. Are there others who are experiencing this kind of care?
Are there NICE guidelines set for Rheumatologists to meet regards frequency of patient visits.
Thanks all.
With the caveat that I’m not medically qualified. It depends on whether your condition is stable. There are guidelines from NICE regarding RA, which can be found at the following link:
nice.org.uk/guidance/ng100/...
But it essentially says that if a patient is stable with low disease activity or in remission, then review after 6 months in the first instance, and annually thereafter. If the patient is not in a low disease state, or not stable, then it recommends that patients should have crp and their DAS score reviewed monthly, but stops short of saying how frequently patients should be physically seen by a clinician. I’d be extremely surprised if anyone on here gets that kind of review schedule, though, outside of crp being checked via monitoring bloods when commencing or changing DMARD or biologic therapy.
Other replies may prove me wrong, but I suspect, and my own experience has been, that many unstable patients are seen 3 monthly if they’re lucky. I have PsA rather than RA, but other than a brief spell over the summer, I haven’t been under control at all since my diagnosis in 2019. In that time, I’ve been physically seen by a rheum doctor twice (only once by a consultant), and by the rheum nurse once. I’ve had three phone consults, two of which were awful, and then half a dozen phone conversations with the nurses, but quite a few appts were cancelled and rearranged. Even when I’ve been in a real mess and contacting the rheum nurses weekly because of the state I was in, I’ve more often than not gone at least 4 or 5 months between reviews with a doctor.
Thanks for your helpful and informative reply. It is much appreciated. I'm on Truxima infusions and Leflunomide and unfortunately it is definitely not controlled at the moment. I will chase the Rheumatoid dept for recent blood tests and take it from there. Thanks again Charlie
I'm on methotrexate and Cimzia and my RA is considered to be in remission. Pre covid , I saw someone every 6 months , alternating between the consultant and the biologics nurse.
I last saw the consultant in March 2020, just before covid hit, and saw the nurse November 2020. I should have had an appointment with the consultant last November but it was cancelled, and I was told not to contact them as I was in the system. I'm still waiting............
Hi Oh dear it's dreadful that you have waited this long. Hope you're ok. Thanks for your reply. It is much appreciated.
You' re welcome. Thanks for your kind wishes. Thankfully I'm ok - I still seem to be ' in remission' with no problems. My joints are thankfully not swollen or tender at the moment. I'm having regular blood tests and they keep prescribing the meds so I guess I'm low priority. I'm sure there are people much worse off than me, needing to be seen more quickly😊
There are Nice Guidelines …but unfortunately not enough rheumatology professionals to keep to them…..so mostly the gaps between check ups varies greatly between areas.
If you are on a Biologic, drug theoretically you should be seen at least by somebody on your rheumy team every 12 months, but some don’t manage that.
If you are feeling much worse you could get some bloods taken by your GP & get his/her opinion if you need to be seen by rheumatology - but if you are plodding along OK & your meds are doing their job, 3 months over the guidlines could be considered by some to be not too bad.
I hope you make the March appoinment…do make a note of anything that is particularly worrying you to make sure you remember to bring it up.
Hi thanks for your informative reply. It is much appreciated. I'm on Truxima infusions and Leflunomide and unfortunately it is definitely not controlled at the moment. I will chase the Rheumatoid dept for recent blood tests and take it from there. Thanks again for taking the time to answer my concerns.
You are very welcome …but always remember if you don’t get in touch with your rheumy team to tell them you are struggling, they will think you are doing OK…so a phone call or a little note is always acceptable.
I have alternate annual consultations with specialist nurse or rheumatologist so I see the Rheumatologist every 2 years unless I need to see her more often. My next appointment is at the end of October when I was given a choice of face to face or telephone. It seems to be working well here.
I used to see a doctor once a year and a nurse in between, so every 6 months (pre-Covid) but now I've had phone calls but have not been seen by a doctor for 3 years. When I chased them for an appointment they said there were no appointments available.
it would seem that it’s a bit of a postcode lottery.
My relocation to the north of Scotland from east Anglia, has proved very beneficial regarding my medical care. The Rheumy dept I fall under is extremely good. I guess I’m high risk, due to high RF and Anti-CCP results, I’m not sure if that is a factor. I have had very good contact with the Rheumy team and, as my disease is currently controlled, we agreed to move me to self referral, but with 6 monthly specialist nurse check-ins. This does not concern me as my experience of this team has been exceptionally good, I.e. when I have called the dept with problems they’ve responded quickly and mostly that resulted in an appointment with a consultant.
Prior to the move, my experience was very different… the Rheumy team were nowhere near as responsive and contact minimal.
I haven’t seen anyone from rheumatology since February 2020, had a brief unscheduled phone call once to tell me they were changing the biologic I was waiting to be put on after benepali didn’t work as well, nothing since. I phone the helpline occasionally to get blood test forms but I hear nothing from them 😕
Hi thanks for your reply. I'm shocked that no-one has seen you since early 2020. I hope your blood test results are within normal range. I think if this happened to me I may have felt inclined to contact them and ask when I may expect to receive an appointment. Hope you're well . Kind regards
I did have a few face to face appointments through covid, when I developed heart & lung issues related to my AS. I had a phone consultation last Dec, and have a F2F with the rheumatology nurse in a few weeks, who I prefer. Unfortunately covid has caused a huge backlog in referrals of people still waiting for initial tests and diagnosis. So stable patients are being pushed back, if they’re stable. Which I personally have no issue with, as it could be me waiting to be seen, start treatment and resume some quality of life. If you haven’t contacted your rheumatologist with any issues since your last appointment, they are probably assuming your stable. Some areas have huge waiting lists for first appointments, Belfast is unbelievably 8yrs for routine and 7yr for urgent. If you are struggling then call the secretary and explain. I have still had necessary MRI & CT scans throughout the pandemic, so I can’t complain.
Hi Maureen thanks for your helpful and informative reply. Yes I haven't been in touch with my Rheumo Dept as until recently ihave been reasonably well. However things have changed and my Rheumatoid Arthritis has been horrible. I will check my recent blood results and take it from there. Thanks again. It is much appreciated.
if you are struggling, I would urge you to make contact with them irrelevant of your blood results. I worked for the nhs, it is part of their daily routine, dealing with patients needing appointment dates reviewed. They would prefer to help you now than hear you’ve struggled. Good luck 🤗
After reading of the experience of others I realise how lucky I’ve been with rheumatologists, not actually having RA. When I was first diagnosed in 2004 I saw a rheumatology nurse every month for about a year alongside my rheumatologist every 6 months. Then the way the nurses were organised changed and they only offered telephone support. I’ve continued to see my rheumatology consultant every six months or more frequently if needed since then. I’m on my second consultant in 18 years and have never seen a registrar.
It sounds like you initially experience is what is called 'total control'. Seeing someone frequently at the start like that along side regular appointments once stable, leads to better outcomes according to the research. However, as others have said, with a shortage of clinical staff, most people don't get this now.
Unfortunately my RA isn’t stable, but my consultant is on the ball re new meds.
I’ve seen my Consultant numerous times over the past 2 years, but my RA hasn’t been well controlled and I’ve had 3-4 flares. But saying that, I think I’m lucky as she is AMAZING, and always gives me the option of talking to her over the phone or a face to face. I’ve had really great care, so I think I echo what someone else said on here about it being a postcode lottery.
I’d say you should have been seen at least once or twice, just even if it’s an over the phone check in to see how you’re getting on, but of course the NHS is on it’s knees at the moment 😔
Hi thanks for your reply and it's good to hear you've had a good experience of care, albeit your Rheumatoid is still not stable. Yes I agree it is a post code lottery! I will phone for my blood results, which I suspect will show high levels of inflammation and then take it from there and then contact my Rhemo's secretary and ask for an appointment.
Thanks again and wishing you well.
Unfortunately after Covid the need to push for an appointment has become greater. We can't wait to be contacted anymore. We have to push, contact Rheumatology frequently. It's not just Rheumatology. It's the same for every NHS service. They are still overwhelmed. Good luck.
Thanks for your reply and yes if you don't ask you don't get! ☹️
I had to wait over a year for my first appointment then I got my next one cancelled a few times they said I could see the nurse so I did haven’t seen the consultant since just the nurse but the doctor was in the next room and she kept popping out to speak to her about me was a bit strange have now got an appointment for 3 months so will wait and see who it will be with if you can see a nurse instead I would do that if you can’t get to see the consultant they are great. Good luck x
pre covid I saw mine every six months then saw dr in feb 21 had X-ray received letter saying will discuss next appointment. I waited a year then I saw phyo he told me to ring them since then I’ve had 3 different appointments sent out and last one should have being in sept but all 3 have being cancelled. On my last call from them they said your dr has covid and we will contact you in due coarse. So guess it’s the waiting game for all of us.
Hi thanks for your reply. Yes I just don't understand why I've been sent seven appointments but all canx - imagine the postal charges and NHS admin costs to do this - such a waste of taxpayers money.
yes I thought mine was bad lol and don’t get me started on my dentist he spends more time cancelling than anything. I’ve had 5 appointments cancel in 3 months but as he says private appointments are coming before Nhs but I know I’m lucky to have one good job it’s only my six month check up well now 9 months lol
Hi I feel extremely luck after reading about the time between reviews. I live in Spain and saw a rheumatologist within a week of blood results following my GP appointment. I then has 3 to 4 week appointments until my RA stabilised. I now have 5 to 6 monthly appointments mainly. During covid I had a telephone appointments.
Hello. I saw a Rheumatologist last December. He changed my medication to Biologics and I was supposed to have a review after 3 months! I kept phoning secretary and was told I was "pending", due to have an appt. end July/beginning August. Phoned again in September, still no appt. I phoned last week and virtually begged for an appointment as I don't think my medication is working and I am so stiff and in a lot of pain. As a result I was given an appointment...not for 6 weeks but at least I have one! It seems to me that it is a case of having to be persistent and "he who shouts loudest". I realise NHS are under a lot of pressure but I expect you feel a bit like I do......abandoned!
I was down for a return visit at the start of September and so far nothing. I’m not expecting to hear because it was two years before I got an appointment last year and I only got that because I contacted rheumatology.
I would say I’m fairly stable, I’m only on hydroxychloroquine so I’m not a particularly interesting case.
A friends husband hasn’t been seen for four years so I’m not hopeful.
Thanks for your reply. Well hope you stay stable while you wait for your appointment.
Four years, surely he must be off their hospital lists! That's awful.
Oh I’ll email rheumatology again if I feel I want to be seen.
I don’t know what’s happening with my friend’s husband - I’m not even sure exactly what his problem is other than he has a very physical, outdoor job which may have caused his problems with long hours and when I mentioned having ti contact them myself she said he hadn’t been seen for all that time( covid has a lot to answer for, I mean it just wiped out all of those years and now we have backlogs as well) and that he was on the maximum dose of the drugs he takes.
Over Covid many Rheumatology Outpatients were shut and staff deployed. I last saw a Consultant in January 2020. Obviously there is now a backlog of emergent cases that need to be prioritised.
On top of this many NHS workers opted for Early Retirement and there is a recruitment crisis. If you need an Emergency Appointment contact your Rheumatology Department and they will try and accommodate you.
Thanks for your reply. Yes there have been a lot of changes during the last few years. Thanks I will be contacting my consultant's secretary. Kind
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