If you have inflammatory arthritis, pls take the foll... - NRAS

NRAS

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If you have inflammatory arthritis, pls take the following poll re: remote consultations. Only answer if you have had a remote consultation.

Anita-NRAS profile imageAnita-NRASAdministrator424 Voters

Please select all that apply:

66 Replies

The only thing I would like to add is that my consultant or nurse usually examines my problem joints (which vary) so that is definitely something which can’t be done by phone. That said, we did discuss the areas of concern and I will hopefully see my consultant in person next time.

Denise64 profile image
Denise64 in reply to RA2002

Hi Exactly the same here too.

That is the only thing that could not be done. I'm seeing them in person in May and I will definitely attend if it doesnt get cancelled. Xxx

My rheumatology consultation was so successful thanks to my particular Doctor. He meets you on common ground, is full of humanity & compassion, and considers everything v thoughtfully. I deeply appreciate him.

gardens4 profile image
gardens4 in reply to Hobbledehoy

You are so lucky, I am just changing my consultant and not felt compassion in ten years. 😯

Hobbledehoy profile image
Hobbledehoy in reply to gardens4

Oh lovie, sorry... Hope the new one is better for you. And that the RA nurses improve - what the heck are they thinking of... Good🍀luck & God bless 🧡

Even before Covid all my RA nurse appointments had been by phone for over a year so over 2 years now.

As I fortunately haven't had any recent flares I was quite happy with a telephone consultation. However obviously that may not always be the case and sometimes you need to physically see your Consultant for reassurance

MommyG profile image
MommyG in reply to Chris-Avis

I agree, I was happy with a phone consultation but I now need a face to face appointment. I’m due to see my Consultant in July, I hope I can. I’ve also been waiting to see an Occupational Therapist since early December. I need to see an OT not have a phone call!

I find it difficult to speak with my consultant & they have not done a physical examination in several years. They spend a lot of the time looking at the computer checking blood results & because there no toxicity & my crp levels are around my usual levels things must be OK

Telephone consultation with my Consultation was very good but I would like my joints examined as they are really painful. This is difficult to explain over the telephone. I would like to return to face to face.

I nd 1 phone consultation with my consultant, and 2 further scheduled appointments with "a member of the team" have been cancelled. I felt very much it was going through the motions, and when I called the help line was told I needed a steroid injection but they're not doing any now. It feels like being abandoned to cope as best we can.

LoneEra profile image
LoneEra in reply to rounder

The steroid injection thing is particularly annoying. I ended up going to a sports physio and paying to get them done myself. There was no way I could have waited (this was late Jan / early Feb) until May!!

I have confidence in my nurses & Consultant - they have up to date blood tests - can give me steroid jabs - talk re meds & look at my joints.

Water-nymph profile image
Water-nymph in reply to Greys

I'm very envious of your experience because it seems that all rheumatology services at my local hospital have been suspended for the duration. Which part of the country do you live in? All my appointments (even phone ones) for 2020 were cancelled and and my 2021 ones have already been cancelled so I'll only have spoken to one nurse in 2 years by my next scheduled appointment in 2022. Our specialist nurse helpline has closed.

Although it has been alright so far to have the telephone consultations, I would not like it to always be done that way. This is because I would not be able to have a steroid injection if it is not f2f and my joints, hands, fingers and feet would not get examined, although having said this, I am not examined very often anyway.

My NHS consultations have been by phone since the pandemic began. However, I have seen my NHS consultant privately twice during this period! Why is it that private hospitals can provide this facility and the NHS cannot? I find face to face consultations to be more productive and reassuring and am not a fan of telephone consultations. Am sure many patients have been let down by the NHS over the past 12 months and will suffer due to the neglect of their chronic conditions.

I think remote consultation for an illness that usually requires that the doctor examine your joints and your overall health presentation is a waste of time.

Akaka profile image
Akaka in reply to 4201

I agree, but I was told that I would not see anyone until 6 months after my diagnosis over the phone and then I would be lucky if I saw the consultant again! No one available over the phone due to unforeseen circumstances for the last 2 weeks. Emails take over a week for a response.

BrightonDiva profile image
BrightonDiva in reply to 4201

I completely agree - but what can we do? these are such difficult time for the NHS at every level

Water-nymph profile image
Water-nymph in reply to 4201

My thoughts exactly. I haven't seen or even spoken to either a nurse or consultant since 2019 because all my 2020 appointments were cancelled. All my upcoming 2021 appointments have already been cancelled and I've been told the one I have for 2022 will be by phone. A single brief phone consultation last month where the nurse quite clearly wasn't paying attention (I told her I was in a flare and couldn't climb the stairs and she sent me a letter stating that all my blood test results were satisfactory and I was in remission) clearly isn't good enough. Our rheumatology nurse helpline is closed and replaced with a 2 hour slot each morning where you can leave a message and someone is supposed to call back - they don't. After having RA for 40+ years, I've never felt so abandoned as I do now as the "experts" have decided they're not working normally for at least 2 years!

Fortunately, my GP is on the ball and contacted me a couple of days after my RA "consultation" to tell me he was concerned about my blood results and I needed to go back to monthly blood tests because my medication is likely to need modifying.

It’s some pretty serious drugs we have to take and not be seen face to face- 18 months now in my case. It’s all very well technically being in remission but as most people know, drug induced remission doesn’t mean not flaring or having zero pain.

If I get to August that will be one phone call in two years while injecting myself with Biologics. If I hadn’t pushed for Eye screening due long term Hydroxychloroquine no one would have picked up on it.

Trying to get into a GP’s surgery is damn near impossible.

I know I should be grateful but it’s all very hard.

Just to clarify, I am in the US.

I don't think a phone consultation is good enough as our joints need to be looked at and my hands are real bad due to not being seen ,I told my consultant about my hands she said it's not an emergency so now my hand has turned in very disappointed as I need to live like this REALLY 😩

I am about to have my third telephone appt in Covid times- and I'm VERY fed up! It will be over 18 months since my joints were examined. The past 2 phone appts (April 2020 and August 2020)were hurried and not satisfactory, as I found it impossible to establish the rapport with my nurse and then my rheumatologist in 10 minutes over the phone. The calls were not made on time, and both professionals seemed stressed and overworked. I'm 69 and have had RA since 1995 - and this has been the first time I've felt I had a sub-standard care from my rheumatology department. I think the pandemic has seriously affected the care I've been used to receiving.

My consultation was by phone which I appreciated as I’ve been shielding for the past year. I do however prefer face to face so that he can check my joints. I travel to another town to see him and usually have 3 monthly bloods taken. During lockdown the nurses have been amazing, posting my blood forms so that I can go to phlebotomy in my local hospital and making sure my medication is delivered to my home on time.

I have had to stop Humira because of cancer during lockdown. I have also had to stop methotrexate temporarily. My RA consultant said I should get an intramuscular steroid if I had a flare......my hands are flared now but receptionist at GP practice says I can’t get an appointment for at least a week and that would just be a telephone call. I feel frustrated that appointments are difficult to get at GPs.

my phone consultations where ok when I was under control but when I had .a flare it was hard to describe, video would have been better. I was followed up by a nurse in a one to one .

My consultant isn’t the easiest to talk to at the best of times and I felt being on the phone made our conversation even more stilted and awkward. I much prefer face to face as I think any doctor needs to see the patient’s physical condition and emotional state too when discussing symptoms and treatments.

I now have face-to-face [private] appointment arranged by GP. Shocked but not surprised by what I read here. I recently returned from overseas, where I was seen once a month by consultant and had a blood test every eight weeks. Sure, I paid for it, but the good public health service in that place would have been similar. Here we are abandoned. I am sorry to write this. Sorry for everyone. I was back here for a year before the coronavirus. This seems to be the normal standard of care - or lack of care - here.

LoneEra profile image
LoneEra in reply to Sohmui

I do wonder how many of us have paid out of our own pocket (or a family member or friend has paid) for private appointments and/or scans and procedures during the pandemic. Even when we can barely afford them.

I suspect the amount spent on alternative therapies - from supplements to acupuncture - has also increased for many people as they try to do their best in the absence of accessible or timely NHS care.

Of course it’s challenging during a pandemic and we are all playing our part - and taking some consequences on the chin. But it does seem like chronically ill people are being disadvantaged even further.

Sohmui profile image
Sohmui in reply to LoneEra

Yes, you shouldn't have to pay. That is the system here. Where I lived overseas, if you could afford to pay then it was right to do so. We are led to believe in the NHS cradle to grave care here and it's simply not working.

priss58 profile image
priss58 in reply to Sohmui

I lived abroad for a while and whilst I paid to be seen, the service was excellent. Blood test results the same day and a folllow up appointment in which the GP discussed every aspect of the results. I always felt that I didn't have to worry, or be left hanging for ages. I know the pandemic has screwed up the health service massively, but I really do think GPs should start seeing more patients face to face. I've barely been able to talk to anyone on the phone. They just order blood tests and even then you can't get an appointment for two weeks! In 10 months I've been in hospital twice for emergency ops when the GP said over the phone, oh, just take painkillers. I'm about to go into my old age savings to find a private service.

Sohmui profile image
Sohmui in reply to priss58

Oh, priss58, I understand so well! I brought a detailed history back from abroad, prepared by my overseas rheumatologist, but the GP here wasn't really interested and handed it back to me. I had to say, "This is a copy for you to keep." He gave me a blood test then but I've not had one for 2 years now. Now I have a flare and really feel I should have a blood test. I am hoping it will sort out when I see the consultant on the 24th. Meanwhile, our GP has pulled down the shutters. You hang on the phone endlessly and then are given a telephone appointment in a week's time. They ask you to send photos - honestly - when with our disease we need to be seen face to face. I hope it gets better for you. Wish I could say it's due to the Covid crisis but it wasn't that good before. We all need to make a fuss. We deserve better. I am paying for a private consultation out of my pension and savings too. It seems to be the only way.

priss58 profile image
priss58 in reply to Sohmui

Yes. I totally agree with all you say. Take good care of yourself though.

Sohmui profile image
Sohmui in reply to priss58

You too, lovie. I want to add that my brother-in-law bumped into the GP receptionist at the vaccination centre. He mentioned that my sister, who has Alzheimer's and is on a cocktail of medication, was due for her annual medicine review. The receptionist said, "You can forget that." Her actual words. Shocking.

My health has deteriorated a lot over the past year and I feel like my health issues have not been addressed and dismissed. However my phone consultation with nurse has been very useful but not acted on by gps or consultants. This is very hurtful and has caused me the most stress through lockdown. Some of my meds have not been located and I have needed to phone around pharmacies to locate and then drive to collect a prescription. All in all ignored. Further I have been seeing an osteopath and bought vitamins and supplements to help myself as best I can.

My consultation was with Rheumatology Nurse as it has been for several years. I am in remission so that is fine but it would have been better if I had been advised when the call would take place so that I could consider what I wanted advice about.

My phone consultation with the rheumatologist was very positive and reassuring, but there are issues which I was told just to keep an eye on until we could meet face to face. So, fine during the pandemic, but in person consultations are better.

My consultant called me 45mins before the agreed time . I was expecting a video call but he phoned. Therefore, although I prepared in advance , I was taken by surprise so the whole thing was a fail. I fail to see how the progression of recently diagnosed joint disease can by gauged without a physical examination. I asked for further tests ( X-rays on hands) but this was ignored.I was given an appointment for a nurse six months later.

With my nurse appointment I was asked to say how each of my joints felt and was asked everything I'm usually asked. I even had extra call yesterday, which brilliantly co insided with me having hip replacement 3 weeks ago.

I found it really helpful. I discussed my meds, my slightly cutting back on prednisolone, he talked me through how my joints were, if I was happy, yes, all in all, very good

Obviously there is no physical examination over the phone but on the whole the experience was very good. Would be happy if every other appointment was by telephone. My consultant is approachable & happy for you to contact her if you have a problem.

I had a phone appointment & a letter of confirmation but my Consultant rang 2 days early. When I said my appointment is on Thursday not today she replied well I’m busy then! I wasn’t prepared & was very upset that I felt the appointment was wasted. The following appointment she rang on the right day but my appointment was between 10-12 & she rang at 8.45 when I was still in bed. Another wasted appointment. I actually complained & PALS were lovely but I havnt had a call from my Consultant since. My last call was from a research dr. Also I am waiting for an ultrasound which was arranged in January 2020 & was told nit to take anti inflammatory meds till after the scan but I’m still waiting 15 months late. I feel if they had actually seen the joint then I may have had my scan by now. I’ve found it all quite difficult.

whaleroad profile image
whaleroad in reply to Otto11

That's shocking.

My consultant was very good and knew my everything about my RA and was clued up on my particular condition. I had 2 consultations and follow up letters Xrays and scans. Another plus I had same consultant both times. Only downside is she didn't actually see my joints.

I should add that I rang the hospital hoping for a telephone consultation because I am afraid of going to a hospital at the moment. I was told the consultant was only doing face-to-face so I am biting the bullet.

I find that I tend to underplay any problems I am having because I always try to make the best of things. I have had face to face consultations in the past where I have said that I am managing, but when the consultant or nurse specialist looks at my joints they say that the disease is still very active. To be fair though, on my last telephone consultation they did ask if I could email photos of my hands - haven't heard anything back though!

I was upset that my most recent consultation was changed from a F2F to phone so I queried it and received an F2F ppointment (first in nearly 18 months) . Resulted in a needed x ray .

Should also add that if the blood tests show reasonable CRP they have no interest at all in how much pain or fatigue I am feeling or in investigating the cause. We are just statistics not people

This was the first consultation with a new Consultant. My lovely previous one has retired. It was useful and productive, even though it was by phone. The next meeting will be face to face in 6 months, unless I have issues before. Very happy and reassured

Had a phone consultation in March and the next one by phone in September is with the pharmacist ! Wondering what good that will do !

I felt that the consultant was merely going through the motions and ticking boxes, but then I had never met this particular one before.

It was a useful consultation especially since it was 1 year 9 months since the previous appointment which was face to face. I forgot to raise at least one issue although I had prepared but nothing really vital. The consultant ordered an MRI for me and made a few recommendations and gave information in a helpful discussion.

The fact that my joints could not be examined reduced the effectiveness of the consultation.

I haven’t seen anyone in 18 months but have had a number of telephone consultations. When I’m ok that’s fine but I’ve had quite a few problems and like others I feel I need someone to actually look at my joints. I get frustrated at being told joints in my fingers don’t count and neither does the pain in my feet. My rheumy team have always been brilliant and respond very quickly but I feel the process is becoming more of a mechanical tick box assessment rather than the compassionate consultation they in a face to face appointment.

Because they cannot test your urine remotely I ended up with a UTI which those of us on biologics are more prone to.

If I were able to have a f2f I would be raising the possibility of a change of medication as I’m not doing nearly as well as I was. However I was told that they would prefer not to make changes at the moment without seeing me. The rheumatology nurses are still working and one arranged for me to have physio by phone which was surprisingly helpful. Another arranged for my GP to give me a much needed steroid injection. I feel they are doing their best but I would like to see someone. My next appointment in June is also by phone.

Anita-NRAS I think your questions are not inclusive I approach my G.P. back January 9th 2020. Went all through the varies processes, then transferred to a hospital Consultant at which point all was shut down to covic, yesterday I contacted My G.P. to find out if the pain clinic are re: open he said yes they are and is in the process of trying to get me some treatment. the last nearly 18,Months have been hell. Hermes

Hermes123

The discussion went well, but the only down side was that I couldn't get my affected joints examined, which can only be done f2f.

I’ve not had a face to face consultation for over a year and I don’t like it

I have had several regular phone appointments with the nurse in the last year. This has not been a problem as my RA is well controlled now and I know that I can always contact the helpline and get a prompt reply. This time I asked about getting a thumb splint for OA in right thumb and was referred to OT and seen within a fortnight!

no physical exam. no x rays. Annual review done by RA physio who could then speak to consultant if needed. I am doing ok but would not have felt reassured if having problems.

worried by my chest - not dealt with - I have COPD as well but would have been helpful to know if worse breathing COPD or methotrexate

I am very tearful and worried. I inject MTX and Imraldi (5 months now) and feel worse than I did before. The pain is creeping over me and I feel like I am swelling up. My ankles are swollen and I have gone up two ring sizes. Don't bother wearing them now.

My 'new' consultant has never met me although he seems to think he has! One telephone conversation on the helpline resulted in a very childish reply. I was feeling very low and in pain/worried. The 'nurse' was trying to outdo my problems until I asked her if she had RA which she didn't. I told her I have suffered most of my adult life with depression/anxiety and that not being seen or listened to was making it worse. Her words were "we are not interested in mental problems". I was speechless.

I spoke to another nurse later on and asked when I will have an appointment with my new Consultant. She gave me an appointment for the end of June. When the letter came it was with the nurse. Again.

I feel lousy and very fed up.

My care has been very good throughout the pandemic. I have had 4 consultations by phone from the rheumatologist, one resulting in a medication change. But, the phone consultation is nowhere as informed as f2f with me doing my own joint assessment and feeding the results back.I do hope that we resume f2f appointments as soon as possible.

The obvious issue is there is no physical examination of flaring joints, and this can be very helpful.My view is that phone and video are excellent for routine check ups, but not good when a patient has ongoing flares or issues.