I've been diagnosed with RA for a couple of years now and on injected MTX doing fairly well. Last year, we just got through the Summer and the warm weather combined with a little holiday before my consultant appointment had me looking and feeling pretty good. I mean I was so badly affected that I was ecstatic that I could walk a mile or two. I was very positive and the consultant said he didn't need to see me anymore unless things took a turn. I was fine with that and assumed that I would still get occasional RA nurse appointments just to check in on any issues. It's been over a year now and I've heard nothing. I wouldn't say I'm worse but I also haven't improved. My shoulders are still extremely stiff and constantly achy. I still get fatigued and generally achy across all joints when I try to be more active. I kind of expected that they would just keep an eye even if annually to see that the disease was not progressing insidiously (it's hard to measure 'getting worse' when one week can differ from the next).
For those that have been on a treatment that has their condition generally under control to the point of being able to do most necessary daily tasks, do you still have regular nurse appointments or are you left to contact them if you think you need more help? Unfortunately for me that would likely be when I can't cope anymore because I'm definitely of the 'don't make a fuss' ilk.
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I've never been "signed off" as such - at each appointment the consultant has said when my next appointment should be; last time she said "I'll put you down for a review in 6 months but with things as they are, it will probably be about a year" and I've just had an appointment come through for the end of November which is just over a year. My consultant has just retired so this will be a new one so it will be interesting to see how he plans to work with me going forward. I'm lucky in the my nurse helpline is very efficient but I'm not backwards in coming forward so I would be ringing them if things weren't going well - it sounds like you may need to try to be the same. After all, they're likely to assume that everything is fine if you don't tell them otherwise 😉
I’m seen every six months but think things are changing due to the Patient Initative Program coming into my hospital. It’s being used by Urology and I think it’ll be RA next. I don’t mind as long as they do make the appointments as promised when needed. But I’ll wait and see.
My Rheumatologist said at my last consultation that I’m stable on my current medication and so I would be put on the PIFU pathway. That means Patient Initiated Follow Up so I can request a consultant appointment if I feel I need it otherwise my appointments will be annually, although 3-monthly blood tests will continue. Was PIFU mentioned to you or did you receive a letter about it?
I don’t have regular nurse appointments although I think some do.
These days we do need to ask for help when we need it as it may not be offered automatically. As you have not had an appointment in over a year I suggest you request one.
We’ve got same thing but different name! I think it’d be a good idea for me as stable too because how will new patients ever get seen if we never get to get reduced appointments. I see consultant then nurse it takes longer to walk from the car park to clinic than to say nothing wrong. But I appreciate not everyone will feel the same and it has to have safeguard so patients still get checked on. I fail to see why patients need to see GP and Consultant as it doubles up service. So I’d be happy to stop the Shared Care too. If GP can’t change anything just what’s the point.
I hope you can give them a call , I guess we need to at times or we could just be left behind..it’s difficult isn’t it.
Don’t feel bad, it’s been a year, it makes sense to say you’d like a review. Most GPs would review any meds they prescribe after a year . So I think rheumy would think it sensible review how things are with you after a year.
I was put onto a PIFU system for follow up and had no regular appointment scheduled. I still do 3 monthly blood tests and take a biologic.I wanted to check things with a rheumatologist as I had some problems so contacted them through PIFU, I was not seen within 11 working days as PIFU leaflet suggested and had to phone again. All sorted out eventually and a steroid injection given, I have not been put back on PIFU.
My advice is read the PIFU leaflet which you should have been given and don't be afraid to contact them if you have problems.
I am on 2 rituximab infusions every 6months so am seen in the day unit by junior drs at every infusion. My rheumatologist asked me what I thought of PIFU as the rheumatologists were discussing it. I said I felt it was a bad idea as patients would be able to notice major problems they were experiencing and ask for an urgent appointment but patients could easily miss important more subtle symptoms which were just as important as they could lead to significant deterioration. Currently I still have 8 monthly appointments with my rheumatology consultant.
Yes I feel you have a point there, I’m new to it all and I’m sure could miss signifcant subtle things, and I don’t like bothering them, which I know is my own fault but I’m sure others are the same. I think they started doing it this way as they couldn’t cope with all the appointments being so busy, but it don’t always make it best for the patient sadly…it will suit some I imagine
As you say, it will suit some patients, especially if they have had their disease for a long time and understand their symptoms but it will be particularly unsuitable for people who haven’t had their disease for a long time or people who just think they have to put up with worsening pain or joint swelling.
I wasn't given a leaflet just told I would no longer have routine appointments with the consultant. I will call the rheumatology specialist nurse though for a follow up.
I've never been signed off. I am seen or telephone call 6 months. My GP does my bloods. If I feel I need to be seen sooner I would email the specialist nurses at the hospital. This has been the system for me over 18 years
It seems lots of hospital departments, are starting to offer patient initiated follow ups, where the onus is on you to contact them. I suspect it’s been brought in to help with waiting times for first appointments.
I would give them a call. If they don’t hear they assume you’re doing ok.
Hi, I still have 4 monthly appointments .. and thought everyone on a biologic had to have a regular 4 monthly appointment as the NICE guidelines used to say this, but not sure they do so anymore. I’m steady re RA under control (my meds are sub cut Abatacept and sub cut Mtx.) but I would let them know how you feel and see if you can go for a ftf and an exam of joints, etc. and even if not on a biologic you should still be seen. My rheumy says you are so much harder to treat if you allow yourself to go downhill. Presume your bloods are still 3 monthly?
That’s a basic test which tells you how your RA is behaving so that should be included, I feel. Unless you have ESR instead of CRP.? You could ask your Rheumy/nurse to ask the doc to include it.
I too would ask that both ESR and CRP (inflammation/infection) are included in the blood tests. I ask and receive a copy for my own files. For me it is the way I check on how I am coping and the results usually match to how I am feeling. I have done this for years. I would contact your rheumy nurse and have a chat.
Not every hospital operates the same way. I’m on a biologic, and at my previous hospital, they canceled every single appointment with the rheumatologist. I was only seen by the rheumatology nurse once every six months, and I’d have blood work done during those visits. Even when I was instructed to contact them for blood tests, they ignored all correspondence—whether through the nurse's line, admin email, or phone line—until I involved the PALS department.
After reaching my limit, I asked my GP for a referral to a different hospital. Now, I’m seen every three months, alternating between the rheumatologist and the rheumatology nurse, and they respond to my emails within the promised 48-hour window—sometimes even sooner.
They seemed very remiss and potentially dangerous, to ignore patients. Good to hear you sorted your care by moving to another hospital. I would not have tolerated being ignored etc., either.
Ours is 3 ,6 12 months appointments always been that And the nurse help line ,ours is hopeless ,
Looks like discharged maybe not sure or if you need a referal its not been handled well or clear, and maybe discharged when your not etc, It's only a couple years in your journey too, In your situation it would be a 12 month reiview ,
Your gp can message rumatologist as well ,mine has
Unfortunately Rheumatology seems to be one of the departments that are over stretched or under funded/under staffed. In my 53 year history of RA from childhood it is the last 10 years or so that appointments have been difficult to come by.
Despite letters stating 'follow up in 12 months' and my chasing, appointments still do not materialise. I was last seen in September 2023 with a 12 month follow up. I chased this and was told 'you have a follow up order request on the system that the bookings team will book once it's closer to the follow up request time.' Ok, so it's now October 2024, still no appointment!
My hospital uses (part time!) My Chart but on occasions the messaging is not functioning. Currently, if I attempt to send a message to my clinical team it says there are no recipients available. Fat lot of good that is!
Back in the day, I was always seen every 6, 9 or 12 months and could phone the secretary who would pick up the phone, but now they have My Chart, I can't message, nobody picks up the phone and appointments don't come through! Progress?
I think after a year, you are in the realms of needing a checkup. PIFU seems to be the way to go for a lot of departments now. I used to have every three to four month appointments with my consultant, but as I'm fairly stable, I went up to six to eight months and last time it was 12. I too am ok with this system, as long as when I need them I'm not kept waiting for months. I used to be able to just ring up and book an emergency appointment with my consultant, so I'm hoping that would still be the case if needs be.
You aren't mithering after waiting a year, so it might be a good idea to give them a call. Good luck xx
In my area London /Herts I see a Dr once a year and a nurse once a year - either can be face to face or phone
I have to do blood tests every 4 months at the hospital and equally every three months at the GP
I was in remission for a year but it’s gone haywire in last months so have an additional appointment in November to maybe change my medication (adalimumab)
I'm up in Yorkshire. It was very slow getting appointments for the original confirmation of diagnosis - My GP tested and found me seropositive but it took a private consultation 3 months later to confirm and then another 3 months for an NHS consultation (that would have been 6 months from my original GP referral) where the consultant queried the diagnosis and so didn't start me on medication even though I could barely move. Then I had to wait for an MRI scan (again I went private because the wait was going to be another 3-6 months). The NHS won't accept the MRI scan without a follow up private consultation. My private consultant then gave me prednisolone to get me moving and I switched to him in the NHS so that he could get me started on MTX but that took another month. All in all it took 9 months from seropositive to medication. It would have been well over a year of being almost bed bound if I'd not taken private appointments! I saw the consultant in the NHS twice after that and a number of nurse appointments as we went through different drug regimes before landing on injected MTX.
That was a long time to wait to get put on proper treatment.
I think it’s now time to contact your Rheumatologist and ask for a review appointment. Suggest they send you the forms to get your full bloods tested including CRP (which your GP doesn’t do) before the appointment. That’s the result the Rheumy needs to see to establish how well your RA is controlled (or not) on your current meds. You should say also you’re suffering with aching and fatigue. Good luck!
Hi. I get seen every year but it’s gets further and further apart coz they keep cancelling my appointments. Last year it was October and now I’ve just had one cancelled from the 6th November. I have really needed to see them since beginning of August but after three phone calls not much joy. 🥲 . I understand they’re so busy but I’ve honestly never been in so much pain.
Do contact them if you can Incase you get worse ,even if they are busy ,it's no way to be treated it is becoming scandalous some of those departments, your cancellations and the way you are with pain etc ,it is vital to get seen to stop the progression etc ,be firm contact pals
I've just been moved on to PIFU. As I'm on methotrexate I continue to have blood tests every 3 months at my GP surgery, and the test results pop up quickly on My GP patient records. I check them to see if anything has changed radically, as well as monitoring how I'm feeling.So far so good.....
I have the 3 monthly tests but they only track the MTX side-effects and not inflammation. Like you I get them on the app and that's quite seamless. I will have to get my GP to include the inflammatory markers.
Until recently I was in medical remission for about five years and in that time saw a rheumatologist twice, and only one of those appointments was a routine check up, the other I requested because I hadn't had any contact/check ups for over 18 months. I don't think I've seen a nurse ever since I was first diagnosed 8 years ago.
I’m on a biologic. Originally I was seen 6 monthly as per the protocol but in the last few years that has become annually. The nurse told me that this was the way things are going. I haven’t seen the consultant for about 3 years. As long as things remain stable I’m ok with annually and I do have the option of requesting an emergency appointment if I have problems. I have my bloods done three monthly at the hospital and just recently because I have had a problem with my white cell count I’ve been having them done more regularly. The nurses do keep a close eye on the bloods and phone with any concerns. I can also ask to speak to a nurse if I just have a quick query. So it isn’t as I was told it would be when I first went on to the biologic but I totally understand that they have a lot of patients to see with new ones being added to the list all the time.
I'd not like to deprive a newly diagnosed patient of a consultation to get started on medication and am happy to speak to the nurse rather than the consultant. Our nurses are fabulous and do refer back to the consultant. I think my first step will be to get the GP to order the right blood tests and take it from there. I'm not sure whether the nurse gets the results from the GP though as I know the results from the hospital come through on a different system from the GP results even though they're tested in the same lab.
My condition has been stable for a number of years.
I had my first face to face appointment in 4 years earlier this year. Of course we had the COVID disruption. It would have been over 2 years since even a telephone appointment.
If things change all I need to do is contact the department for an appointment.
I was last seen by consultant in March 23, my follow up letter stated I would be seen again in 6 months as my meds may need tweeking, still waiting for that appointment. I am stable and G.P. does 3 monthly bloods. I am going to get in touch with rheumatology to check still on the system.
I've been in remission since 2013. Up until the last two years I was seen twice a year, once with my consultant the other time a specialist nurse. For the past 2 years it's just been a yearly appointment with my consultant. I was asked last time if I was happy with a yearly appointment and I said I was. I know the rheumatology department is under tremendous pressure at the moment, new patients being added all the time so being seen once a year is perfectly okay with me. I've got good specialist nurses and the odd time I've had to email them about anything I've had a reply within a few hours.
PIFU, patient initiated follow ups, hasn't just been brought in to deal with waiting times, the research goes back at least 20 years to show that there are better outcomes for patients with PIFU.
From what I can see it all started in the UK at Bristol Royal Infirmary in 2000:
"A patient‐initiated system for hospital review over 2 yr offers some clinical benefit compared with the traditional system, using fewer resources and attracting greater patient confidence. Longer‐term assessment of the system would be appropriate."
From a paper published in 2014 where they did a systematic review to look at the longer term assessments :
"There is evidence to suggest that PIFU systems result in fewer overall outpatient appointments in secondary care led services while maintaining equivalent if not better patient satisfaction, quality of life and clinical outcomes across a range of chronic conditions."
I find it a delicious irony that PIFU appears to have started in Rheumatology departments, and yet in my trust it seems rheumatology is the only department not using PIFU! But then there is a rule of thumb in medical research, it takes on average 17 years to get from research to beside.
I think that the problem with academic research into schemes such as this is that it is carried out with the intent of the scheme working. That means that all possible measures are taken to ensure that both patients and NHS staff are fully aware of how the system works and the scheme works like a well oiled machine. When rolled out 'in the real world' patients are not so well informed on what constitutes a need for a follow up appointment and may not fully understand how the system works. This means that some patients will fall through the cracks. I'm not suggesting that PIFU is a poor concept, but if patients are not properly informed as to what to look out for and reassured that they don't need to wait to crisis point, some patients may delay until irreversible damage has occurred.
If my hospital is practicing PIFU (and I suspect it is) then it was not clearly explained other than the consultant saying 'I don't need to see you again unless your condition deteriorates'. I made the assumption that nurse appointment would continue at a less frequent rate and if they noted a change, they would flag it. The scheme could work really well if on deciding that the patient can be transferred to PIFU, they are given a final appointment with the nurse where the scheme is explained and any queries answered.
The departments in our hospital using PIFU not only explain it to the patient during the appointment but they have a little booklet that comes with the follow up letter, and it also explains it in the letter. So it is very clear that some departments are using PIFU and some aren't. There is no excuse for not explaining it to patients!
That sounds really helpful and in that case, the patient is reassured that they can call up when they need it but don't waste their own or the consultant's time with unnecessary scheduled appointments.
I’m afraid these days we have to be proactive & if we feel we need information give the rheumy nurses a call, & discuss what’s bothering us.
That is not how it should be…but with the state the NHS is in at the moment,& with rheumatology in all areas seeming very short staffed I guess we are fortunate that there is help there eventually.
So if you feel you need some reassurance.…….get on the phone & see what is offered in your area.
Hi I have been on metoject pen and orencia for 9 years now . Just get flare ups now and then. Have full bloods done every 12 weeks at rheumatology and see my consultant every 9 mth. If I have a problem I ring the rheumatology helpline and someone gets back to me in 2 to 3 days. I hope this helps
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