Changing Rheumatologists: Hi All I'm currently very... - NRAS

NRAS
26,870 members30,812 posts

Changing Rheumatologists

14bubbles
14bubbles
29 Replies

Hi All

I'm currently very unhappy with my rheumatologist. I came out of my appt yesterday afternoon in tears as I have been left feeling like my rheumy doesn't actually believe I experience pain and inflammation. Before Christmas, I got so tired of being in constant pain and some days, my fingers were so stiff and sore that couldn't tie my hair back because I couldn't stand to grip the hairbrush. However, in the last couple of weeks, it has suddenly got a lot better. This means my joints weren't inflamed when I saw him so he told me I need to take photos to prove that there is genuine inflammation. He has seen the inflammation on previous visits. I feel like me telling him about my symptoms is not enough and I feel like he just doesn't give a damn. My appt lasted about 5 mins.

I'm guessing there are people on here who have made the decision to change rheumatologists, for whatever reason. I was wondering if anyone can give me an idea of how difficult it is to change and what you had to do to make it happen? I hate moaning and complaining, but I can't just keep going as I am at the moment.

Thanks for any help and advice anyone can offer.

29 Replies
oldestnewest
Mmrr

I'm considering going private to get a second opinion, so I understand your frustrations.

It depends on where you live as to how easy it is to change rheumatologists. I'm in Scotland were there is no right to a second opinion, only a referral if acceptable to your GP. The system is different in England if you live there, maybe someone from England can offer some insight.

There has been quite a few different posts today from people disgruntled with their rheumatologist, it's sad to hear.

Reply
anastasia43

I've been to about 5-6 rheumatologists by this point, I believe. The first few weren't even bothered with diagnosing me back in 2014, and I don't think they even believed that I was in pain at the time, so eventually I got tired of trying to prove things and gave up on doctors altogether.

The RA was very mild back then and if only I could have treated those telltale signs and stopped the disease in its tracks...

Anyways, my experience will be a bit different because the Russian healthcare system is most likely completely different to yours. Those first two doctors were in the private sector, but I went for free through insurance. In 2018 I had a huge flare up and went to another private doctor, who seemed very enthusiastic about getting me diagnosed and out the door to go into public healthcare. Well, she got rid of me but the public system didn't do me any good.

Finally, I searched around and went to a private doctor which my insurance didn't cover, and I chose her based on reviews I found online, as well as her skills. That's where I struck gold! She was blunt that treatment in the private sector would cost a fortune, and she would rather help me as much as she could, but then find a way to get me into good public healthcare. She stuck to her promise and now I get all my infusions paid for by the government, and have some pretty good docs, but I know I can still call/message her for advice whenever needed. I think that was actually the only time I've ever gotten lucky with healthcare.

4 likes
Reply
kenzie210866

Hi. I can tell you my experience but can’t guarantee yours will be the same.

Firstly, I think you’re doing the right thing.

I contacted my hospital’s PALS service by email, explained where I was being treated and politely asked if I could request a different consultant. I didn’t give a reason.

I had to follow it up after I heard nothing, but they asked the rheumatology service manager to contact me and he did.

He asked me if there was a reason - I wish I’d had an answer prepared, but I just said I’d prefer to see someone else. He said it was fine, asked me who I wanted to see and switched me to their list. It was that simple.

The good thing about going through PALS rather than directly to the service manager is that PALS will follow it up and make sure you get a response.

You might want to prepare an answer in case you are asked to give a reason - otherwise you might just end up getting upset and not make yourself clear (I would have cried down the phone if I’d tried to explain on the spot, that’s why I didn’t). Nothing wrong with getting upset, but it might not help get you what you want.

Also, if people keep switching doctors because we’re misdiagnosed and we never go back and tell the doctor why we left, they’ll never learn.

Do you have another doctor in mind? You might find reviews of your department doctors on the iwantgreatcare website - or leave one yourself to help other people!

Good luck.

4 likes
Reply
14bubbles

Thanks for the reply, it was useful and reassuring. I used to see another doctor, who I was reasonably happy with, she at least seemed to believe me when I told her I was in pain! Unfortunately, they had to split her list between her and this other one, and I was one of the unfortunate ones who got switched!

Where did you find the email address for your PALS service, as I can only find a phone number at the moment (would prefer to deal with it by email, as I'm much better at expressing myself in writing than I am on the phone!)

Thanks so much for your advice.

Reply
kenzie210866

Hi, the email was on the hospital website (you might find it under the complaints and compliments section?).

PALS should have an office in the hospital itself that you can go to in person - although you might find that even worse than the phone. I've always found them super friendly and helpful. I hope your experience is the same.

Reply
14bubbles

Thanks, I have found the email address and sent an email this evening, hopefully they will help. Thank you for all your help.

1 like
Reply
Susiebee31

One piece of advice I’ll give to back up your time when RA in flare and you have swelling , inflammation etc, smart phones are useful. Photograph your swollen joints, redness etc. Photos are evidence to back up your story. It’s a sad state of affairs when Rheumatologist seem disbelieving and flippant. Had the same problems with dire consequences for my feet. Photos, photos, photos! And keep diary with dates

3 likes
Reply
14bubbles

It certainly does seem a sad state when you have to prove that you have something...

Thanks for responding.

Reply
Hidden
Hidden

I asked not to see a certain rheumy again due to inaccuracies in the follow up letter he wrote ( he’d obviously not listened to what I had said) They were a bit off with me but I haven’t seen him again and it’s written in my notes.

5 likes
Reply
Rubyroo1

It may help to see if someone on here is at the same hospital,or in your area at a different hospital, who could recommend another Rheumy. You may have to go back to your GP to be referred to someone else, or contact the hospital outpatients and ask if they can change you to someone else. Sorry you had a horrid experience, it doesn't help when we feel crap in the first place ! Good luck with changing.

3 likes
Reply
14bubbles
14bubbles
in reply to Rubyroo1

I used to see a different rheumy at the same hospital, but when they split her list, I was unfortunately one of the ones who got switched. It certainly doesn't help when we are already feeling crap, and I absolutely hate moaning, very few people know how bad it gets so not being believed by my doctor just makes it much worse!

Thanks for responding

1 like
Reply
oldtimer

I can remember feeling like that with the last rheumatologist (he's just left and no replacement in the offing) but when I appeared next time with photos of the offending joints he seemed much less disbelieving.

I suppose they do get people who exaggerate their symptoms and it's difficult for them to tell the difference when there is not any confirmation.

1 like
Reply
BonnieT

What did your blood test results say?

Reply
14bubbles
14bubbles
in reply to BonnieT

I've always been seronegative, my blood tests have, on occasion, shown inflammation. He has also seen the inflammation in my fingers previously. I didn't have a blood test this time and I don't have to have regular blood tests for medication so I think its probably 6 months since my last blood test, possibly longer.

Reply
BonnieT
BonnieT
in reply to 14bubbles

I suffered for years and doctors told me my blood work shows there’s an autoimmune but nothing definite. I was so bad last year my doctor said I needed a rheumatologist. Again blood work was not positive but she could see my pain was real as I could hardly walk. Meds are helping. I think I found a good doctor but I believe too many are afraid of treating pain if it’s not severe and visible to them. I hope you find a really good rheumy soon. They’re out there.

Reply
14bubbles
14bubbles
in reply to BonnieT

This is the problem, he seems too focused on what he can see and not what I'm telling him. My issue with this is that he only sees me for less than 5 mins every 6 months if I'm lucky and it just so happens that during those 5 mins, I had no inflammation...he's ignoring the fact that before Christmas I was in near constant pain and the inflammation and stiffness was so bad in my fingers that I couldn't hold my hairbrush well enough to tie my hair back! Its so frustrating! I'm glad you've found a good one, hope you are getting sorted.

1 like
Reply
BonnieT
BonnieT
in reply to 14bubbles

I was in a bad flare just before Christmas too. Pain in my legs was so bad I had trouble walking. She injected both knees for me. That didn’t kick in for a week but did help me through the holidays along with prednisone which I’m weaning off of. Was almost off when I had the inflammation of the chest/breastwall. And GP has me increase it again because I can’t take NSAIDS. Good we have this forum to connect.

Reply
14bubbles
14bubbles
in reply to BonnieT

Hope you're on the mend now and can start to get off the prednisone again soon. It is great to have this forum, its nice to know that the people you are talking to understand...my family and friends try and they are great, but they don't always quite get it!

Reply
BonnieT
BonnieT
in reply to 14bubbles

Feeling better, thank you. Down to half a tab. Going for stress test next week. Hoping that goes ok. Wishing you a great day!

Reply
MissMinto

I switched rheumatologist and went to a different hospital altogether just over a year ago - I wish I'd done it earlier!

My original consultant left and went private and I just never 'clicked' with his replacement. I felt the department descended into chaos and never saw the same person twice.

Once I'd asked around and was given the name of this new person, I simply asked my GP to refer me, which she was happy to do as she too had seen my health deteriorate and was frustrated that letters weren't answered, x-rays/scans weren't followed up etc.

Good luck in whatever you decide to do.

2 likes
Reply
14bubbles
14bubbles
in reply to MissMinto

Ideally I'd rather not change hospital...my sister lives very close to my hospital which saves me the hassle and expense of parking at the hospital!

Thanks for responding, its good to hear that people have had positive experiences with changing rheumy.

1 like
Reply
jane1976

I’ve changed hospitals 3 times. Each time I asked my GP to refer me. There are pros & cons for me in that my first hospital had not so caring RA doc but brilliant RA nurses. The 2nd hospital had no nurses & doc didn’t even look up on the 3 occasions I saw him! The 3rd & last hospital which I still use, it’s pot luck out of which of 3 doctors picks up your file from the pile!! 1 of the docs quite brusque, the other 2 come across a bit more caring & efficient. Also there is a helpline to leave messages on & the responses are prioritised & I find it very good!!

Good look with your search

Reply
14bubbles
14bubbles
in reply to jane1976

Thanks for your response, I used to go to a hospital where the doctor changed 3 times in the 2 years I was there for but the nurses were fantastic and they were who I mostly saw so that was fine. Unfortunately, I moved to a new county so had to go to a new hospital where they don't seem to have the specialist nurses. The doctor I had first was OK, though I preferred her registrar, but then her list got split and I got moved on to the new guys list which just sucks!

Reply
wishbone

I haven't had a rheumatologist since mine retired last august with no sign of a replacement. I believe my area is missing a second rheumatologist as well. I should have seen a rheumy back in october but that never materialised. Instead I have an appointment with the nurse tomorrow, which is no great shakes as I'm not in serious trouble or anything. I do have a few things that need sorting though but suppose the nurse can contact someone if she's stuck. That said, I do find it more than a little concerning the way things seem to be heading with the NHS.

Reply
cathie

It’s not difficult. I asked people who went to the same department about their experiences after finding out which other Rheumatologists there were. My GP gave permission to see him privately and I explained without criticising his colleague unduly. He put me on his nhs list and never allowed me to pay. It worked pretty seamlessly.

Reply
cathie

And having looked at the next message, I’m in Scotland and had no problem changing. But I wasn’t asking for a second opinion as such, just a competent doctor

Reply
Sweetpolly2016

Did you take a blood test? The labs will show if you have RA

Reply
14bubbles

Not true, there is a high percentage of people with RA who have normal blood test results, its known as seronegative. I have seronegative inflammatory arthritis, that was diagnosed years ago and I've been taking medication for it since diagnosis, my trouble at the moment is because I didn't have any visible inflammation when I saw the rheumatologist on this occasion, he doesn't seem to be taking me seriously when I tell him how bad it sometimes gets and therefore thinks I'm fine as I am.

Reply
jane1976

It seems very hit & miss RA care !!

Reply

You may also like...