I was diagnosed in 2015 with Rheumatoid Arthritis and until early 2020 was seeing my Rheumatologist regularly every 6 months or so... However the last time I physically saw him face to face was Early January 2020 ... and yes then Covid happened ... so then had 2 telephone consultations in May '21 and May '22 .... since then absolutely nothing. So that being 4 years 8 months since I have seen anyone face to face and 2 years 4 months since even having a telephone consultation. He has now taken to writing a short letter every 6 months saying he is keeping an eye on my bloods!!
Am I alone or are any of you in the same boot.
I have suffered badly with my right knee and have had years of steroid injections but no further investigations ... no x-rays/scans etc...
I have Neutropenia and the usual pains in joints etc.
I am getting really fed up with this now and don't know what to do ..
Is it the same everywhere or have I just been forgotten as I don't jump up and down screaming and shouting!!!
Any advice greatly appreciated
Written by
gailboddy
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I'm sorry to say that unless you tell them that you're having flares/pain/swelling on your current regime they don't know to change your meds. Maybe your bloods don't reflect what is happening to your joints? Have your inflammation markers been raised for example. They do only seem to make regular appointments if you are proactive in telling them that things aren't working properly. So not jumping up and down yelling at them but actively participating in your care is necessary. Take photos and keep diaries of symptoms to show them too as I've found that flares suddenly clear on the run up to the day of an appointment!
I don’t know about everywhere but here things are normal. They ran in Covid too. I see Consultant then RA nurse each every six months. But we also have a helpline. If I were you I’d ask for an appointment as it sounds like you need one. I actually asked for phone appoitment but was told no due to disease level even though it’s in remission.
You are lucky. I havent seen my rheumatologist on the NHS since Covid…was just having phone consults with the RA nurse. I have had two separate private consults with him since but see the RA nurse F2F every 6 months. Lucky I can afford it at the moment
Unfortunately, you are not alone . All you can do is contact your rheumy team & tell them you need advice. If you have difficulty getting in touch with them on the telephone, write them a letter.
If we don’t contact our Rheumy team and tell them what our problem is they will presume we’re doing fine.
Of course , it is not ideal, but these days the NHS is under such pressure the only way to get much needed help …is to pester politely for it.
I agree with Gillybob, you need to let them know if things aren’t ok as they will assume they are if you don’t tell them otherwise. Things here seem to be the same as where you are, bloods are kept an eye on and I’m no longer getting 6month/annual appointments but can be seen if I need to be. If I am stable then I don’t need seeing regularly. I’m happy with that as it’s at least an hours trek to get to the hospital, I’ve had a RA a long time so am happy managing myself mostly. This is not you though so I’d get on the phone to let them know what’s going on. I hope you get seen soon.
My last two appointments were with physician associates and some appointments are switched to telephone. I'm fairly stable but even when I've had problems they don't really do anything so I've come to stop caring. The physician associates are pretty useless.
Thank you all for your replies. I have my long term condition review with GP this month I will also ask the nurse there too ... I think I need to take control of my own care otherwise I guess they all think you are ok!! Time to be forceful I think!
I’ve had a mix of F2F and telephone consultations since Covid. Sometimes it’s slightly longer than they said next review would be. However if I’m struggling, I can phone and they’ll get me in promptly. As others say, if they don’t hear from you, they assume you’re doing well.
Hi seems all different all over the place ,I'd ask for a f2f hopefully you get one
I've not had one for 18 months ,
On other hand
I always get an appointment after each appointment used to go book appointment after seen rumatologist he says how long and i tell appointments,now I get put through to book appointment after telephone appointment
Can I just ask for a clarification Osteoarthritisra? Are you saying that after your appointment you can book your next appointment, even if it is for 3 months, 6 months or a year?
in my area we have been told they can't book that far in advance, they can only book 8 weeks in advance. So if like me recently, you are told you need an appointment in one years time, they will only arrange it 8 weeks before that. And if the clinician forgets to put it in the system, then it will be 8 weeks after you ring up to remind them.
Then if the appointment they give you (we have no choice) doesn't suit (for example clashes with another appt) then it will be delayed for another 8 weeks.
I am discussing this with PALS right now, so it would be interesting to see how other areas arrange future appointments.
We can’t even do that I just get a message via Patients Know Best which I like and if it’s difficult then it takes ages via the booking system to change. I’ve arranged holidays around appoitments. But Renal also does the same at a different hospital so I’ve assumed it’s the same all over. Only department which did do appointments at Clinic was Othopedic when I broke my leg. My GP has no involvement except under shared care does blood tests as can’t see hospital ones and a “review” when they feel like it. I assume as they get paid to do it that’s when they are looking to generate more income. A total waste of time in my view as they can’t change any prescription but at least they make sure I’m still alive.
At my clinic you used to get seen at least every 6 months by a consultant. Then, since covid, responsibility was pushed onto the GP.
You'd get a letter for a review telling you to make appointments to see the nurse, then a doctor 2 weeks later. So you see the nurse, get jabbed and then go to the GP only to be looked at like you're something that just fell from the sky.
'Yes, what can I do for you?' You told me to come for a review. 'Oh...'
But then rheumatology appeared to take over again as an appointment came through to see a nurse.
The helpline is useful though. The eye clinics I'm under don't provide any direct lines.
Same for me have annual review this month at GP bloods first then appointment 2 weeks after .. I wouldn't mind but they never ask about RA just check blood pressure and go through blood results .. waste of time!! However I am going armed this time with a list of complaints about my care since 2020 .
Hi there 😁. I’m sorry you’re feeling the way you do, totally understandable 🥰. I don’t think you’re alone. I too ended up with telephone consults 4 years ago due to covid but my symptoms were stable, I almost felt like I was taking hydroxychloroquine for nothing, life was good and I never saw or heard from anyone . Not a problem or so I thought until my left knee was injured during exercise and swelled up and after 3 months never went down. Last resort of just seeing physio and no scans I rang rheumatologist dept and nurse apologised to me. She said irrespective they needed to see everyone at least every 2 years to check meds and apologised for not contacting me. So, I personally would say push for an appointment, get either them or your GP to do bloods ( results back quicker) . I think it does depend on where you live , mine is Cheshire west . My results are next week and I’m bracing myself for not great news. Wishing you good luck, ( terrible when you are the one who has to do the pushing, sad times) 😘😘
I was in the same position and our rheumatology department appear to be doing the same, go by your blood tests. However, I have found out that if they find any problem with your bloods they will ask you to have another blood test. If they are still concerned mine set up a phone appointment with a nurse and if still concerned mine set up an appointment for me to go in. Good luck.
I last spoke to my consultant in a phone appointment in April 2021. But I have had annual face to face appointments with the rheumy nurses; they are supposed to be six monthly but they told me that because they are so busy it would be annually. However, if I have a problem I can ring them and either get a phone appointment or if they think it necessary, they will give me one of the clinic spots they keep for emergencies. I do have my bloods regularly monitored. It’s supposed to be three monthly but I’ve had some issues with them lately and they have been two weekly or monthly. If there is an issue with my bloods, usually due to low neutrophils, the nurse always rings to let me know and arranges for another blood test in a couple of weeks.
I was told by consultant in March 23 after an appointment that she would see me in 6 months time as my meds may need upping, I'm still waiting for appointment but I am fairly stable at moment and no joint damage, I only have pain when overdue things but rest sorts that out, do have 3 monthly bloods done by G. P. who is not concerned that I have not been seen by rheumatologist , told me to get in touch with them myself.
Do not accept a telephone call, they tried it with me, i told them straight how you going to assess me on the phone, call them up and demand to be seen face to face, just tell them I want you to check me over , its simple, do not accept what suits them, it is about you
I am in the same situation as most others on this forum in that I used to be seen every 6 months by a good rheumatologist, now it seems to be every 2 years if I'm lucky unless my bloods go crazy, my lovely GP has had to pick up the pieces.I tried the rheumatology helpline which used to be excellent and spoke to a nurse who really didn't seem to know much at all viz don't bother with the bloods we don't look at them! They put me on a PIFU , so I asked for an appointment, they haven't done that again.
Sorry this has become a rant, I am still quite well, so fortunate but feel unsupported and a little fearful for the future.
Our hospital has a lovely new cancer centre which may explain the lack of interest in Rheumatology. I hope I don't need to take advantage of that.
Hi, obviously all areas are run differently but usually these days there is a help line if you are unwell and need assistance as it seems that in some areas if you are coping well and have no problems you do not have regular appointments and are coping well with your medication which l presume you are on for the RA. If it were me l would write in to my RA Consultant to ask why you have not been seen since pre Covid and tell him of any problems you have you are having and request an appointment. I presume your GP is issuing your meds and performing regular blood tests for you so l suggest you become proactive with them as well if they are not checking you. Sadly some people are missed off lists so put your self first and let them know . Best wishes for success
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