NHS England are currently transforming the way outpatient services are delivered across all health areas and as part of this, have suggested that people with stable inflammatory arthritis should not continue to have regular annual or six-monthly appointments to see their rheumatology-team but only see them when they feel they need to e.g. due to arthritis flare, side-effects of treatment or because they need to see a physio/OT or podiatrist etc. This approach is called Patient-Initiated Follow Up (short-form PIFU). Whilst seeing people whose disease is well-controlled in hospital may not be the best use of NHS time/resources or the individual’s time, some clinicians and patients/patient organisations are concerned that such an approach may result in worsening disease control for some people, resulting in joint damage. On the other hand, seeing your rheumatologist when you need to – and not when you may be well – may result in better treatment of your condition. A team of UK researchers are applying for funding for a large UK study to support this. But to get funding, we need your insight!
Since Covid came this is pretty much what my experience has been of rheumatology at my hospital anyway, no appointments made and I’ve contacted them when I’ve needed to be seen.
That sounds sensible.I do think since Covid skewed all sorts of outpatient appointments, a lot of people with ongoing conditions in all fields have attended appointments when they are sent, in case they don’t get another offer.
The question is…how would staff organising these appointments decide who really needed to see a consultant ? Blood tests don’t always tell the whole story & with RA…on Monday you can be happy to wait another few months, but by Friday you really need an appointment?
There have been times I wished I could give my appointment to someone who needed it more, especially when I see how long people are waiting after referral now. But I'm not convinced by their promise to offer everyone an appointment within 2 weeks under this system. Inevitably, some people will use it a lot more than others and the noisiest ones will be prioritised.
Not everyone is capable of conveying the extent of their problems on the phone. We have that issue already with GP. There needs to be a fully accessible way of requesting the PIFU appointment, allowing for all types of patient, or I can see it leading to inequalities in care.
I feel worried about this. Having multiple conditions, whichever specialist I’ve seen has always said, ‘I’ll refer you back to the capable hands of your rheumatologist because he sees you on a regular basis’. Although, it could be seen as a get out clause for other consultants, it does affect a few RA side effects such as Sjögren’s, lung nodules, osteoporosis, fibromyalgia, etc. In my case, as another example, I have had numerous bad reactions to NSAIDS and DMARDS so I had been having 3-monthly IM Depo-Medrone injections. This may stop as I am shortly going onto my first biologic but I was told on my last visit that the Depo-Medrone injections would continue until I was stable on biologics.
I would not like to think that I would be just left in the hands of Sciensus, which has taken weeks to set up and although I’ve had my injections, 2 (!) x 4 litre and 1 x 1 litre (eventually) sharps bins delivered about 2 weeks ago, I don’t see the nurse until 22 May. I’m already receiving daily reminders to order my next supply, 2 weeks before I start using the first lot. It worries me that this is yet another part of the NHS that is heading towards privatisation.
I can’t help but worry that I won’t be able to get an appointment if things go wrong. I’d hate to have to go through the GP route of being re-referred, especially when you can’t get to see a GP either.
I share your concerns Blackwitch as its the unpredictability of our conditions. I too have multiple conditions and the mental pressure of not being able to speak to someone over things is unbearable. Where I lived previously, you could phone up your rheumy but wait days sometimes weeks for a response. I resorted to emailing which was sometimes faster, but not before you had phoned 2 or 3 times. It's no wonder as they told me they were getting up to 400 calls a day.
Done x
This is a ‘red flag’ for me. Some of us are well versed in our conditions, but others are not. I am back to yearly appointments (after Covid) and that suits me. When I was first poorly I used to go every few weeks.
People who ‘don’t want to be a bother’ will be left hurting. Others will ‘overuse’ for any little twinge. The Rheumatologist has always known the appropriate time between appointments; I’m fine sticking with that.
This is how I feel, though I'm also open to the idea if it can be proven to be workable. AND that the patient is the one who gets to decide if they are stable.
I currently have 6-monthly appointments though, and I'm at the stage where I think annual would be enough - as long as I could get help quickly if needed.
My only contact is with the consultants secretary ,who now deals with all Presciption requests.I waited 4 weeks once as they had no one to sign prescriptions!
I contacted 111 their Dr was horrified that people were being left without medication.She tried to contact them without success.
We don't have a nurse helpline anymore, only a biologics helpline. It's a voicemail service and someone promises to call you back. Not once has my call been returned. Not once.
I've done it and am also uneasy about it. My "annual" review was due in February and although things are relatively ok ATM, I'd really like to see the consultant as I have some queries but don't feel that ringing the nurse helpline would be appropriate and if I had to ask for an appointment, I'd probably feel guilty that I might be a time waster so wouldn't do so and something might be missed.I realise that I'm probably being a member of the "worried well" brigade but sometimes reassurance is very valuable.
This raises another really good point. And the result is probably more people would instead contact their GP, who don't have the capacity to deal with any increase in demand.
I activated a PIFU today: month 5 of a 6 month open appt. It was accidental as I’m in pain with TMJ so called to see what could be done. It’s hard to keep track of it all tbh. This was with maxillo; not rheumy:
I haven’t seen my consultant since February 2020. I have had one phone appt with nurse and three phone appts with consultant.
The phone appointments were of very little use as it is difficult to describe pain.
My main concern is that the satellite clinic I attended closed ,without warning The prescription and the helpline both closed without notice. I feel quite abandoned 😀
Yes increased communication is needed , not only between Rheumy nurses & patients but within the rheumy teams.I saw a very nice registrar & we went through my notes together…many of the procedures I’d had were not noted & the list of drugs I’d taken & comments on how they had or hadn’t helped was just not there.
After all- the one person who really knows what treatment has been given is the patient!
Yes…I keep any info I think useful..in fact my rheumy laughs at me when he mutters about someting & I click open my iPad& tell him he prescribed x on ?… date& I spent x days in the bathroom!
I havent seen mine since March 2020. I was given an appointment for Nov 2021 which was cancelled, then eventually I was given an appointment for April 24th this year- which was cancelled 3 hrs beforehand.
That’s shocking but I think this seems to be the way we are going. Without being political, things seem to be moving at breakneck speed towards privatisation before the next GE (only in my opinion, of course). 🫣
I was last seen 'in clinic' in September 2019. During Covid I had phone calls, last one was July 2022, but really need to be seen. They tell me I'm marked as 'urgent' when I chase for an appointment, but I've been 'urgent' for over 6 months now!
I feel the only thing that is being monitored is my blood results.
I could really do with seeing Rheumatology or an elbow surgeon again, especially after I tried the GP route, was booked in with an out of hours service (no idea why) who said he had my notes and had read them but emailed exercises I can't do! I told him my shoulders, elbows and wrists had limited ROM and yet the exercises were place your hands flat on a wall - I haven't been able to do that with fused wrists for decades! It's frustrating!
This is happening in Grampian region of Scotland too. However, the consultants are being selective, only agreeing PLFU with patients they are confident will contact them when needed.
something like that in Lothian. Within a week of sending an sos to my rheumy I got an appointment for 2 weeks time to hopefully arrange an infusion. Ok as long as the procedure goes as planned
Not sure how this will work but I am having problems getting in touch with my rheumy team. Supposed to have a 3 month check after starting imraldi six months ago - still waiting and trying to get hold of the advice line is impossible. So I have had to revert to good old fashioned writing a letter (no email address available) so now await reply.
When I'm ,'stable' id say yes but with some concerns. My Rheumatologist only goes into the hospital 3 says a week, when she's not on holiday, which is quite often it seems. When nurses have told me they'll sort an urgent appointment it's been 3-4 weeks to actually get one.
Hi Anita. I would have joined but have already started shared care with my GP. I wasn't happy with it at first. It took me out of my comfort zone but I have had my first appointment at GP surgery with a nurse and it was very good and very relaxed. As I have no pressing problems at the moment it went well. The only problem is that I don't get my book filled in but I can get a printout of my blood results whenever I want. So far, so good.
I would not be happy with this, I feel I have 'slipped ' out of the system with no appointments booked, I was told early last year I would be seen again in December and to expect the Rheum nurse to give a telephone appointment following being put on Jak meds , several messages left with the secretary - no contact back. So cannot believe this system would work well for many of us.
I can see the reasoning behind it, and it could work. However I’m concerned they those of us who can be in full flare, but normal markers will be dismissed as “your bloods are normal”. I have AS and despite my bloods always being normal I have heart and lung damage from uncontrolled inflammation.
My other concern is some worry about bothering specialists, whilst others will be pushing for an appointment for every little issue, to see if it could be connected to their RA.
Where I live another company, using gps with specialist rheumatology knowledge, or rheumatology nurses see stable patients. It frees up the service for those who need hospital appointments, those on biologics remain under hospital care. Those on dmards can be seen at their local community hospital or even gp surgeries. They still remain overall under the rheumatologist and can be referred back to them as needed.
My other concern is that dmards and biologics can only continue with the correct monitoring. Some of us are very proactive in ensuring our bloods are done, and checking results. Others need handheld through the process, and if they have PIFU appointments, who’s ensuring these bloods are getting done. As their medication will be paused if they haven’t completed their monitoring requirements, resulting in flares.
In itself it's not a bad idea. HOWEVER I heard from a local rheumy nurse contact that there was a move to discharge you if yourself not been seen (in person or phone I assume) in the past 15 months...in our area at least.
As we're living with a life long and unpredictable condition, I found that deeply worrying. To have a flare/ meds failure/ etc and have to wait months to get back into the system is appalling.
In today’s climate, if somebody doesn’t ask for a clinic appointment for 15 months …..it really isn’t surprising their rheumy team think that patient is getting on OK.
Anybody who feels they need their medication adjusting or changing or if new symptoms have appeared should write to their rheumy team.
I’m sure somebody on the NRAS helpline would help anyone who is hesitant to put a letter together.
I assume this would only apply to patients on nsaids, as DMARDs require a shared care agreement with your gp, due to the toxic effects of the drug and strict monitoring required. I would have thought those on dmards and biologics would have to remain under hospital care, as surely they wouldn’t discontinue medication that’s keeping a patient stable, all because they haven’t chased for an appointment. If only on nsaids I can accept that can be managed by s gp and referred back if things change. Problem is rheumatologists lists just get longer, as everyone stays on their books till they die, and more are joining the lists than are dying, making the lists challenging. At l lol east surgeons discharge once you’re stable.
Yes, I can't see how you would be discharged if you're on drugs that require regular monitoring. I probably need to question more to find out what's going on.
Perhaps the basis is the GP practice doing the monitoring. I'm under shared care for prescribing and blood tests
it may be similar to my area, Kent, who have brought in a private company to oversee straightforward cases, which includes dmard patients, but not those on biologics. My understanding is they are not discharged though, they remain under a rheumatologist, but don’t see him, unless the specialist gp or nurses have an issue. It’s called connect health, they work for many Trusts now. Here’s a link for anyone interested in what they provide.
My understanding has always been and as told by my rheumy a long time ago that those patients on biologics should be seen 3-4 monthly as stated in NICE guidelines. Maybe that’s changed.
I think this removing ‘stable’ patients from annual reviews would be a big mistake. A number of problems in inflammatory arthritis can develop quite subtly without a patient recognising that something is going wrong e.g. contractures in various joints could develop and the patient may not notice until the contracture is advanced. Even patients on regular biologic infusions need a proper annual review, as although seen by a junior doctor before each infusion the examination at that time is very limited and mainly to check fitness for infusion. Inflammatory arthritis such as RA is not just about joints as it is a multi system disease and even well informed patients are likely to miss important symptoms e.g. respiratory and neurological.
So are the NICE recommendations changing that you no longer have to be seen by your rheumy/consultant every 3-4 months when you’re on a biologic/high spec med? That what I have been told many times when I asked to extend to 6 monthly appointments. My thyroid consultant says 6 monthly is fine as I’m so stable and has done this for around 8 years and get in touch inbetween If needed.
Whilst I agree that this MAY be a way forward with patients with stable disease I do have reservations about access if & when necessary. Personally I generally get good care once I get an appointment with my Consultant. Its accessing an appointment that is currently my issue. I was last seen in October 22 as at my previous appointment in March 22I had a rash most likely caused by Abatacept & had been referred to Dermatology for biopsy. I also had weight loss & severe fatigue possibly Long Covid & full body CT's arranged to rule out malignancy. All of this required follow up which I had in October however I was till awaiting the biopsy & some other tests so my Consultant asked my whether I would prefer to be seen in 3 or 6 months. I said 6 months as I knew the other appointments may take some time. She also advised against any further Covid vaccinations until I was next seen. I then had bilateral foot surgery in February so had to stop Abatacept in January 23. I was expecting my follow up appointment with Rheumatology in April as lots to discuss & was still off my Abatacept as I had an infection after the pins were removed. I rang the advice line several times to ask if I could have a steroid injection to help with my pain but they refused due to it stopping the healing process.. My appointment arrived for July when I will be on holiday so I called to change it only to be informed that it would be a long time before I could get another appointment, most likely 3-4 months. I'm upset as this will be over a year since I was offered an appointment for 3 months which I now realise I should have accepted. So if you could be guaranteed an appointment in a few weeks if required then that would be great but in reality I doubt it will happen.
Agree with you that the appointments could be pushed on and even more delay re not being seen for unstable RA/RD. I am sorry you’ve had such long waits and problems.
Thank you. I’m sorry it was such a long post! I keep calling in the hope of an earlier appointment or cancellation. I’ve been back on Abatacept 3 weeks but taking a while to kick in again. X
Not at all, it was well written. 💗 I hope Abatacept starts working again well for you. I’m on it too (Sub cut) since September 22 but have recently had to pause also for a dental extraction and antibiotics.
I started Abatacept the week before lockdown in March 2020. It’s been working well for me. Hope your extraction is healing now & that Abatacept works well for you too. Take care x
I’m not sure this is the best way to go, I was left too long due to too many patients not enough rheumatologists, July 2021 to December 2022 as they said my inflammation levels were not considered high, so I had to wait for my appointment, I now have damage to my knuckles on both hands, feel better now I’m on imraldi after 7 weeks, I didn’t make a nuisance of myself (wish I had) I will do in future if it goes this way.
Hi Tkat10, thank you, I hadn’t thought to do that, will get on to that, they did get me on imraldi as soon as was possible once they see my hands, hopefully it will carry on getting better with time, it’s been a relief as it’s getting better over the weeks.
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