Online discussion opportunity about Patient Initiated Follow Up (PIFU)

[Aribah-NRAS]

NRAS is collaborating with and supporting a team at Oxford who are looking at Patient Initiated Follow-up as it is being rolled out by NHSE and who are proposing to conduct a clinical trial which will include the development of resources for both patients and health professionals. Please see the notice below and whether you are on a PIFU pathway yourself, or are not, the researchers are keen to hear what you think about this important topic on the way existing and future follow-up care will be delivered. Please reply to the researcher on the advert, not to NRAS.

[AgedCrone]

Tbh…since Covid disrupted regular RA check ups..I think a lot RA patients whose disease is not giving too many problems have been doing just that.

The problem as I have seen it, is that many GPs have not suggested this to patients..who have then fallen through the gap, because they were not given advice by GPs & were not aware they were able to to refer themselves.

[Knip in reply to AgedCrone]

My RA is, currently, more stable so my consultant has suggested that I have a consultation over the phone once a year but if I get any problems at all he will see me within three weeks. I just need to ring the helpline. I think this makes a lot of sense and readily agreed. So many times I have had a flare and not been able to see anyone for ages. I just wish the Chron's would settle in the same way but that continues its unstable up and down journey!

[AgedCrone in reply to Knip]

I think it is just beginning to dawn that we patients are well able to decide if we really need to physically see a rheumatologist or as you say, have a telephone conversation ……we can have a list of questions,& the doctor is able to decide from this whether he needs to see someone in person..or whether to send us to see a rheumy nurse or go to our GP.

Although seeing the latter is nigh on impossible these days , so adding to their workload, probably isn’t a good idea.

But something has to change as on this site alone many, especially those newly diagnosed with RA are left floundering.

It’s become obvious there aren’t enough NHS rheumatologists to have the old style regular consultations, nor to be able to phone for an appointment and get it “any time soon”. So let’s hope a workable system can be developed.

I hope your Crohns settles soon.

[Knip in reply to AgedCrone]

Thank you Aged Crone. Are you still collecting handbags, or was it shoes? 😀

[AgedCrone in reply to Knip]

It was handbags!!!🧰

But all those I had & that I lovingly packed for my move…,were shoved in a cupboard on arrival & are slowly going to charity shops.

How I bothered when I was younger to change handbags to match what I was wearing I don’t know!🙄

[Knip in reply to AgedCrone]

Further to the post above from last month, I have just had personal experience of the new system that my RA consultant has put in place...for patients who are happy with it. I was, and am, happy with it. Following a DEXA scan six weeks or so ago, I recieved a text from my GP saying that I was being put on Alendronic Acid as advised by my Rheumatologist. No consultation about this. Having read all about it, I sent an email to the RA Team, saying that I was surprised that this hadn't been discussed with me and that I had not recieved the results of my Dexa scan...not written agressively in any way...and that I didn't want to take it. I was aware that replies by phone or email can, under the new scheme, take up to eight days. Two days later my consultant, who is a lovely man, rang me and told me that I have osteoporosis now, in my right hip. I explained my reasoning and he understood where I was coming from, agreeing that we 'would hold off for now' and that he would write to my GP and put him in the picure. I have to change Calcichew to Evacal D3, and I am going along with that. My point is that on the old system I know from experience that I wouldn't have had such a rapid response! Incidentally, I have had great help from the forum on here relating to bones, as I always have from the RA site, proving that these sites are invaluable. Hope you are staying well and are not in a part of the country where the flooding is. Here, down South, the sun has just broken through for a bit following a light shower.

[Ascidian]

I don't like online discussions, so won't apply to join. However, I do have concerns about the PIFU. I am someone who doesn't like to make a fuss, and always thinks others are worse off. So I am at risk of waiting too long to ask for a follow-up. So my worry is that unnecessary damage could occur whilst I dither. For this to work, they need to give very clear guidance on when to initiate contact. Personally, I have had none.

[AgedCrone in reply to Ascidian]

Well you are half way to solving your problem as you acknowledge you have it.

So now…when you are presumably content with the status of your RA..why not start keeping a diary & when you feel things are starting to veer off track…& before they get out of hand…..speak to your rheumy nurse….for her input & advice.

The nurses really do have a lot of experience of why a patient asks a certain question….it may be to do with their mental attitude,& they are worrying unnecessarily, & that they just need a chat to have the problem explained by somebody other than friends, who can’t really help….because they don’t understand the disease. In other words…not something a rheumatology consultant needs to be seen for.I know that is not what we want to hear, and that is presumably why PIFU is being discussed ?

Being completely realistic although I know everyone wants to see only their Rheumatologist….you must agree that is just not going to happen in the way those of us who were diagnosed many years ago experienced. There are not enough doctors & there too many patients!

So let’s wait & see what is suggested on how PIFU will work, before we get too worried about not getting the treatment we need.

[Fruitandnutcase]

I suspect my rheumy works with PIFU although no one told me that. Last time I needed to see a rheumy I emailed the consultants secretary who got me an appointment for several months ahead. Think that was over two years ago. Id say my Inflammatory arthritis isn’t too bad so I can live with that and if I feel I need to see someone I’ll email his secretary again but I know I won’t get an appointment for months after that. Haven’t ever been told rheumy nurses and I’ve definitely not got one.

[AgedCrone in reply to Fruitandnutcase]

I think we have got to accept that things have changed & work with what we’ve got don’t you? I must admit when I was first diagnosed my hospital had either 6 or 8 rheumy nurses…they now have three. Even pre Covid we were forbidden to email them. If you leave a phone message now…it’s quite likely you will never get a reply,

Another route that only brings disappointing is reading NICE best practice on line & seriously expecting to receive regular access to a Consultant ……for any medical specialty.

Unfortunately the NHS don’t seem to accept that & are spending presumably a fair sum of money on TV ads advising us to “just ask your GP”.

I don’t think many of us have much success there do you?

[Fruitandnutcase in reply to AgedCrone]

Oh those TV and radio adverts for the NHS!!! They drive me mad. I wonder how much they are blowing on that. Last time I heard them on the car radio I was considering submitting a FOI request to find out how much they spend on that sort of useless advertising. Anyway, I always think to myself ‘NO, you doctor really doesn’t want to see you’.

I think it’s best not to expect too much and then you won’t be disappointed. I remember my endo appointments years ago - my first dealings with a hospital. I used to turn up bright eyed and bushy tailed expecting I know not what. Certainly not what I got when I arrived. So by the time I reached rheumy a few years later I knew not to expect anything much.

Even then though at my most recent appointment I was surprised to be weighed and have my height taken while wearing my very clumpy winter shoes, not exactly accurate - if I wear flatter shoes next visit will it go down on my (osteoporosis) record that I’ve lost height or just changed my shoes? I’m on the lookout for platform soles in varying heights 😂

[AgedCrone in reply to Fruitandnutcase]

And all this WOKE nonsense.

I am beginning to wonder if my decision that a doctor I saw prior to my Rtx infusion recently ….at a new location …who I thought was barking mad,….was just reading from such a script?

For starters….he didn’t check who I was or my DOB…that rang bells!

He asked me if I was bleeding. ..I said “No I’m here for an infusion”…he then proceeded to ask if I was having my period” I replied” No… I’m over 80”….and he looked at me as much to say “So what” ? He then disappeared & came back & asked what infusion was I having? The whole procedure was chaos, and I am going to push really really hard not to have my next infusion there.

I may be living in ignorance… but I don’t know many women still menstruating at 80+ do you? But at least he didn’t ask me if I was still the same sex as appears in my Birth Certificate…which was a question on a form I completed recently…..can’t recall what that was for now!

[Fruitandnutcase in reply to AgedCrone]

Imagine not even checking who you were and your DOB! The whole visit doesn’t sound very inspiring honestly. ‘Are you still menstruating?!’ As if! Maybe if we were we wouldn’t have osteoporosis. A definite venue to avoid next time. I really don’t know what’s going on in the world at the moment.

[rmros in reply to Fruitandnutcase]

If anyone asks me my gender identity or pronouns I just tell them I'm an atheist.

[AgedCrone in reply to rmros]

Like it…..will follow suit!

[Fruitandnutcase in reply to rmros]

🤣🤣🤣

[AgedCrone in reply to Fruitandnutcase]

The trouble is like most things in the NHS now ….where treatments are given is decided by grey suits who don’t even know there are different types of infusion.

Seems like it’s “Oh they do infusions at X …so let’s move Rtx there”

For the previous 6 yrs Rtx infusions were given in the chemo clinic ,….where for starters the chemo,/biologic nurses are experienced in getting a canular set up in such a way that when you are hooked up for maybe 6 hrs..you can bend your wrist & wheel yourself to the loo without a nurse leaving her duties to help you. They also knew you needed to be weighed & your height checked…at the new place that did not happen….nor did the 30 min Obs happen….without a nudge.

We almost came to fisticuffs when I nicely asked the nurse to insert the needle where I usually had it…she screeched she knew what she was doing…& I was really grateful that my fellow patients all supported & agreed with me.

There were 6 of us having Rtx…so we approached the nicer of the two doctors & asked all innocently…If Obs had been cancelled for Rtx…& all of a sudden..there was a nurse + hca being instructed “how to”!

There were no decent couches to sit on….with large arm rests to rest the arm having the infusion.

At the new place… you either climbed onto a bed..with nowhere to put your coat, bag ,phone , book or iPad. Or you sat on a dining room type chair with nowhere to put your arm. ..or anything else, for that matter…for maybe 6 hrs!

At my age & + a painful fractured vertebrae…neither was ideal.

In the end I think I whinged so much I was moved into a single room used by the phlebotomist…with a couch to sit on…,but Obs were very hit & miss in there,

All this was after I had been sent home the day before because “somebody,” had managed to tear off the neck of the bag holding the Rtx…& it had to be decanted..which apparently took 3 hours!

In the end the infusion cost me .. £160…..two return journeys to the hospital.

Doesn’t sound like 21st century medicine in UK does it? It’s a day I don’t want to repeat……but I also don’t want to stop .Rtx!

[Fruitandnutcase in reply to AgedCrone]

That is absolutely awful isn’t it. When you hear that story you can understand how ‘somebody’ managed to tear the neck off the first bag etc. sounds like someone was having what seems to be termed as a ‘learning experience’ these days.

Doesn’t sound like the screeching nurse did know what she was doing - if she had she’d have done it properly and wouldn’t have had to yell.

Pity you can’t do an anonymous Trustpilot review on them like you do for M&S and other stores.

Is there a patient’s group you could approach with a view to getting them to fund raise for comfortable chairs to lounge in for infusions? That might make a point.

Do you have hospital transport in your area - I don’t think it is free here and I think if you’re the first person picked up or the last one dropped off it’s a long day.

[AgedCrone in reply to Fruitandnutcase]

The transport was provided by a local charity who take us oldies to hospital appointments etc, if had used a taxi it woul have cost more than double…as they charge £3 per mile & it’s a 50 mile round trip…..