I've been trying to remember when my annual Rheumy appointment might be due so asked a GP this week whilst seeing them about another matter.Turns out my last appointment was in November, so its overdue.
The GP said he was aware the rheumatology dept had problems with recruitment so he wasn't surprised.
He suggested I wait and if I've heard nothing by July....to chase it up. This would have been my first annual review since getting diagnosed and treatment.
I wondered if this was typical for rheumatology and what others experience of their annual appointment has been, if they have one.
Also waiting until July, 7 months late, seems a pretty relaxed approach. But I'm generally well apart from MTX side effects (I think it's the MTX anyway). So maybe I should wait a while and see if they contact me.
Any thoughts or advice gratefully received.
Seb.
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Sebastian247
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Just wanted to comment on my experience. I see my rheumatologist every 3 months. Often times blood work is done. Also, I get a complete eye exam once a year just to make sure everything is well. Good luck moving forward with your RA. 🌻
We live in FL and that is not the case for us. My husband is seen twice a year and if need be he calls to get in for any need to be seen now appointments
My last two "annual" appointments have been overdue and both times I rang the department to be told that they were behind with appointments but they were able to give me a time scale; they emphasised that I could ring the nurse helpline if I had any concerns but as I hadn't, I was happy to wait. When I last saw the consultant she said that she would put me down for six months but that it would probably be more like a year. I think that most rheumatology departments are struggling for staff but my nurse helpline is still good so I count myself lucky.
If I were you, I would contact the department (mine has an appointments line) to ask for news. On one occasion I was told that they were running a few months behind and to ring back after that, on another occasion they looked to see where I was on the list and then offered an appointment a month or so away which meant that I could choose a good time for me rather than having one allocated.
Sorry, yes I meant November 2022. So it's now 14 months since my last appointment. And as you say it would be 20 months if I waited until July. Thanks for the advice and support. Seb.
I haven’t had an annual appointment for a long time. It used to be 6/12 monthly but that’s all gone to pot. If I need to be seen because I have a problem then I call the helpline or get my GP to chase up an appointment for me. If you’re doing ok and your bloods are ok then do you really need to be seen, a lot depends on what you want from an appointment, me I’m happy to wait and not drive an hour there unless needed but that’s just me and I’ve been diagnosed a lot longer 😊
I get what you're saying. I'm only quering it because the rheumatologist said he wanted to see me in a year. And as I'm relatively recently newly diagnosed it seemed like a good idea. But your approach makes absolute sense to me. Thanks.
I agree that since newly diagnosed you should be seen face to face and have an opportunity to discuss how treatment is going and whether any tweaks needed.
Annual appointments are a thing of the past at my hospital. I was seen in September 2019 and had to chase and complain to PALS to get seen, which I was in September 2023.
I haven't had a face to face appointment since the start of COVID. I have had at least one video call since then. Previously I used to see the consultant about once a year and the specialist nurse between those appointments However my RA is stable and well controlled with no side effects from the medication. I don't think at the moment there would be much benefit for me in seeing the rheumatology team.
If the situation I just have to contact them and I'm sure an appointment would be arranged.
In your case as a more recently diagnosed patient I would expect some kind of check by consultant or specialist nurse on a regular basis.
I am in the same situation as you. Had another telephone appointment yesterday in which I said that I was fine and have been for quite a few years now. He said they would not be sending me another appointment but if I needed one to phone direct to make one and still have the helpline if needed urgently. Fine by me as I did feel that appointments were a bit of a waste of time for both of us.
Yes if I get to that point I would be fine with that however the so called helpline is no good goes through admin takes days to get any responses from nurse going to take it up with them in telephone appointment
Same here - I've been doing okay for a while and would rather not have routine appointments, but have the option of requesting to be seen when/if needed.
But they seem to have increased my appointments instead. I wish they'd been so keen when I was newly diagnosed and struggling and couldn't get seen for love nor money.
It would seem that there is no standard schedule from reading people’s replies to your question. My hospital says that my consultant review appointments should be every 6 months but in reality are probably every 10 months. I do have a nursing team/help line that I can call if I need advice or access to my consultant though. That’s enough for me because my RA is well controlled at the moment, but I’d be making a fuss if that wasn’t the case.
I live in the South West and I've always either had a face to face or video if I don't need examining every 6 months or sooner if there is a problem. The helpline or email system works well too .Like most hospital departments there are staff shortages and with bugs around a testing time of year
Like others, my last face to face appointment was back in early 2019, so 5 years ago! I had a phone call consultation in May 2020 but, since then, nothing whatsoever. Their helpline is just an answerphone but nobody ever rings back. I think they've lost me!
I know I should contact PALS to get an appointment, but why is everything such a fight these days? So many simple processes are broken. Even getting a GP appointment is such an awful ordeal - I'd much prefer not having to put myself through the process, so don't.
Yes, at the end of the day, we can all stand up for our rights, but when this includes something as simple as getting an appointment, I do wonder how we (as a society) have allowed this to happen. I think it's an extremely sad reflection of the deterioration of what we used to value.
Theoretically I am supposed to see either the rheumatology nurse or the consultant every six months but since covid it hasn’t been that frequent. I last saw the nurse in February 2023 and she did say that it would most probably be a year before my next appointment and indeed that’s the case as I have an appointment for February 2024. She did also say that if I was struggling to contact them and they would see me sooner. As I’m pretty stable on my medication I am ok with this. I have regular blood tests done by rheumatology and the nurse will always ring me if there’s a problem with them.
My first consultant appt was when I was diagnosed in October ‘22. Nxt one is March ‘24, so 17 months between. However I hav had regular appts with RA nurse, usually every 3/4 months in between. It’s very much a postcode lottery isn’t it? Hope you get to see them soon!
There is a lot of variation across the country and one possible reason for this is that some areas use what is know as tight control. This is where people in the early stages of disease are seem more frequently until the disease is under control at which point it often switches to PIFU which is patient initiated follow up. This could be why in some areas people are seen more often in the first few years of their journey until they are stable with their treatment, and then only receive appointments when they request one.
My experience since 1999 in RA departments in Oxford and now in Edinburgh has varied enormously so I dont think there is a 'normal'. It might depend on how your RA is being controlled, or the staffing situation in the department. When a new consultant was appointed in Oxford coinciding with a new building opening, things were transformed.
I'd expect early on in your diagnosis to see the consultant quite often, at least twice a year. Some of the treatments take a while to kick in, so more frequently might not be useful. But more than a year before you're happily established on a regular medication feels inadequate. Hope you can get somewhere with this.
Many areas are going over to a system where you only get an appointment if you request one.
I would firstly contact the appointment line to find out when it's scheduled. You could have been lost to follow up, been sent an appointment that you haven't received (and even taken off the list becasue of this), or there may just be a backlog (most likely).
It isn't satisfactory that, so soon after your diagnosis, you are so unsupported in your journey managing this condition. Long term conditions should be a partnership between BOTH parties, the patient and the medical team, not just the patient struggling on by themselves.
I was diagnosed around 4 years ago and was never even told that I should have annual reviews!!!!! GP confirmed Arthritis and prescribed Algesal cream on repeat prescription and that's it. Never been given a review.
Hi I would contact them it will prob be a while before you get a appointment. I thought the same as you but its very nearly 2 yrs since seeing a rheumatologist and I feel like I've been forgotten, since getting RA 43 yrs ago it's the longest I've waited for a check up, it was usually about 6mths and you were given a date for your next appointment before you left the hospital.That changed a few years ago before covid. Anyway your post has spurred me on to contact mine 😁 hope you don't have to wait too long best wishes Sarah
Thanks Sarah. Wondering if I've been forgotten is partly my concern too. If the rheumatologist hadn't said he'd see me in a year i wouldnt be thinking about it, but he did. Even just a letter or text explaining there was a delay would be ok. I hope you get an appointment sorted too. Seb
Yes I totally agree it's the not knowing, I get bloods done at the gp but would like to see a rheumatologist, hope you get sorted soon aswell, best wishes Sarah
Im fortunate to see my RA nurse twice a year and my RA specialist doctor twice per year too. I fall under Greater Glasgow area although I live outside Glasgow.
I do find if I have issues inbetween I can call and talk to my RA nurse and they will see me if need be. Maybe worth calling them.
My experience with my RA Consultant has been superb since my very first appointment following diagnosis in 1999. I have always had regular appointments - no pain a voice call, in pain a face to face with no delay. Having read some of the experiences, I know I’m lucky and I live in the South, in Kent. Please push for your consultations, perhaps find out the Consultant's secretary’s phone number and call her. It works. Good luck
Reading this thread is deeply depressing. So many of you have substandard care, and have had very poor explanations of what you shoukd expect. I knew things had gone downhill since Covid, but not this badly. Occasionally I think about going back to the UK, so will pin this to the fridge to remind me not to!
Yes the NHS is in trouble and there are not enough rheumatologists, but by patients taking this without pushing back doesn’t help in the long term.
If you think you need to be seen then tell your medical team as assertively as you can.
The NICE guidelines say this:
“We want this guideline to make a difference to people with rheumatoid arthritis by making sure:
- you are offered the right medicine to slow the condition as quickly as possible after you are diagnosed, as well as medicines to ease your symptoms
- you and your doctor agree a goal to work towards so that you have good control of your symptoms – to help you reach this goal you should have regular monitoring so that your doctor can adjust your treatment if needed
- you can see a specialist quickly if you need to when your symptoms are worse
- you can have other therapies to help you live with rheumatoid arthritis, like hand exercises, advice about footwear and insoles, support with everyday tasks, and help to cope with stress and negative feelings.
Decisions about treatment and care are best when they are made together. Your healthcare professionals should give you clear information, talk with you about your options and listen carefully to your views and concerns.”
If this not what you are getting then tell your local Health Watch, and PALS.
Interesting the other help through therapies wasn't offered anything but have spoken up and have referrals made mainly through asking the physio. My GP is really not getting involved. Even down to not offering vaccine despite hospital writing saying what I needed have been to pharmacy a day received some of them.
It's worrying RA sufferers experience of services and treatment varies so widely, from great to virtually non existent.I also have hearing problems associated with RA and the audiology dept is fantastic, couldn't expect better care. I wonder why there are such variations in service, even within the same hospital.
The NICE guidelines seem like a distant dream for many RA sufferers.
Thanks for all the comments. It's been eye opening. I appreciate I've more fortunate than many with the treatment I've received.
Just because you feel you’ve been “more fortunate” doesn’t mean you shouldn’t push to get an annual review. That is what clinical experts think is the basic standard of care, and no-one else will fight for you but you!
You can call your hospital for your Rhumey appointment, I called the hospital, you will get your appointment, I have my appointment on Monday (coming). Speak to your Nurse and he/ she will sort it for you.
Hi that seems to be a common theme in some areas due to shortage of staff, if your concerned you could always ring the appointments dept to ask if there is one pending or the RA help number as sometimes patients do slip through the net for appointments . I should have been seen by another department in December for results of a scans l l rang the secretary to ask and found that my records had been pulled as l was an inpatient for another problem and had been returned for records dept on discharge so l had been missed and now have my appointment. It's worth ringing good luck .
Just a final update to this thread. I've finally been contacted by Rheumatology (unprompted) for an annual appointment. It's over the phone, apparently due to Covid (I would have preferred it to be in person to be honest). It's four months late but that's probaly not bad under the currrent NHS circumstances.
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