Bad v good Rheumatologists: Given I'm a newbie on this... - NRAS

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Bad v good Rheumatologists

Jaxine
Jaxine
22 Replies

Given I'm a newbie on this sight with RA diagnosis, it would be interesting to find out what everyone considers a good rheumatologist as appossed to not so good? My experience yesterday with my rheumy were of mixed thoughts. It seemed to me, from her stance, that she wanted me in and out quickly, it appeared very rushed didn't ask me if I had any questions although I did keep asking them but with some speed! At one point I started to cry ( just a tad) she just said to me ' ok I need to get through asking you some questions, can we continue) if I'd been crying hysterically for a long time I would understand her agitation but it was nearly a little blip that last 3 seconds! I was just another number, another newly diagnosis to be diagnosed. Felt I was intruding on her very busy schedule so really it was just a blur. So much information given to me, I was given instructions to go to pharmacy, x ray, bloods, leaflets and appointments given, my hands full of leaflets blood bags, etc etc and basically thrown out of the door. All I remember is to give bloods in two weeks, I'm assuming I'll get appointments to see Rhumey nurses? Yes think on reflection that whole experience would be a good video induction to newly qualified Rheumatologists on what bad practice looks like!

22 Replies
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Simba1992

Well this is an example of how it shouldn't be. So sorry you had to go through this experience, that is unfortunately shared by too many, me included.😡. Simba

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Jaxine
Jaxine
in reply to Simba1992

Knew I should have taken in a hidden video camara! Would loved to have jumped off my seat and said ' I've been lying to you, I'm doing my thesis on 'bad practice' cheers for that!

4 likes
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Simba1992
Simba1992
in reply to Jaxine

These docs should really need to get a push back from patients! Busy schedules and stress is no excuse for treating patients badly. I dumped my rheumy. You really need a good doc to support you to get best treatment results. Simba

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allanah

I feel for you. I have a good rheumy. My definition of that is he's always late seeing you lol. why is that Good? Because he takes the time you need individually for your own problem. If that takes half an hour that's what you get! So you wait but when you see him he really listens, discusses, advises , and if you cry you can tell hes empathetic.

Of course it could be on your first appointment you feel vulnerable etc and you want them to sort you immediately but for me the whole RA thing is about patience.

Patience to get tests done, patience for results, patience for drugs to work. But patience is SO hard when you are in pain.

You will probably be seeing your rheumy for a long time so next visit may I suggest if you didn't this time, take someone with you( I couldn't see the wood for the trees on my first few visits my head was buzzing ) also write a list Of questions( the number of times I meant yo ask something and forget) and I hope you get to know her a bit better soon and you can have a genuine discussion as part of your treatment process.

If not it is possible to ask for another rheumy. But get onto the treatment and take time to be kind to yourself. Someone told me at the beginning of my treatment it's a marathon not a sprint and I think that helped me deal with it.

Don't forget the info on the NRAS website is so good and their helpline is amazing for support. There was days I called it three times !! And they helped every time xxx

I hope you feel better soon xx

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Doughnut61
Doughnut61
in reply to allanah

Brilliant info 💕

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AgedCrone

Unfortunately Jaxine that is Welcome to the NHS 2019!!

But please don't get too stressed over it,

I expect are still thinking "What the hell.....this can't be happening to me" ?

But you have. already passed "Go" in actually seeing a Fheumatologist....in some parts of the country people can wait a year to get to that point.

There is a Nationwide shortage of all grades of Rheumatologists,& if the person you saw yesterday was quite young she may have been a Registrar, taking your history to hand on to the Consultant.

So have you booked your blood tests...or are they going to send an appointmentment? Until those are done not much will happen.

But if you feel you need more information call the Rheumatology Nurse Help Lline, & ask your questions . If you don't have the dedicated number, call the hospital switchboard & they will put you through....it will probably be an answerphone....& a nurse will cal you back..

Once the Consultant has all the results he/she needs...you will probably get another appointment to discuss any further treatment.

As far as a Good Rheumatologist is concerned it's a very individual choice.

I like a doctor who tells me how it is...however bad it might be....then answers my questions honestly.....

But that does not suit everybody......I find your best friends can be your Rheumy Nurses, they often have more time , so get to know you better,& work out how you much information you want to digest at a time. But you probably won't get much longer than 15 minutes with them, so get used to writing your list of Q's before appointments.

Once you are set up with some drugs you will feel more as if something is being done to help you.

Honestly it does get better,but I'm sure in your position you feel as if you need a bit more TLC.

Just look forward to feeling better, & ask away here if your medics don't answer all your questions.

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helixhelix

The main association of rheumatologists estimate that there should be 1 rheumatologist for every 85,000 people. The reality is closer to 1 for every 200,000+. There is a horrific lack of them. And of course not everyone of those 200,000 people need a rheumy, but since they cover all musculoskeletal disease like lupus, scleroderma, osteoarthritis, gout and a host of others they are overwhelmed. Apparently rheumy's can see 20+ new patients a week! And since we no longer die off from RA their patient load just gets bigger and bigger.

Which is absolutely no excuse for poor patient communication, but perhaps will explain that it is not personal to you. I have been lucky with mine (bar one pompous creature) and have had people who are able to communicate a lot in a very short time. I've learnt to have my list in front of me very obviously, and I sit tight until we have been through it.

If you've not got new appointments then don't assume they will appear. Try to phone the hospital and find out. And find out the number for the rheum nurses too and ask them. This is a self- service disease and you have to be proactive about everything. However yiu will find a way through it.

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Jaxine
Jaxine
in reply to helixhelix

Yes I understand that defo, as a social worker working in child protection my case load was enormous! I had the gruesome task of grappling with all my cases who all deserved and immediate attention however, it was always needs led all within a strict eligible criteria. And on top of that being on duty call out, at times I was bursting through the seems. Acting as Mother Teresa, health professional, and so forth. I've worked for years working within a multi professional team with doctors, consultants, and a huge host of health professionals so I've seen from the inside the huge and daunting task faced with carrying a huge case load. But unfortunately it's a shame that whilst doing ones job ( irrespective of time limits, patient case loads) just a little compassion for those who feel vulnerable about their first diagnosis would be a kind gesture. Just some acknowledgment in way of body language could give some solice. I don't expect the consultant to start crying and throwing arms around patients! Just always think how you would feel if you were on other side of the fence attitude.

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helixhelix
helixhelix
in reply to Jaxine

My first one did hand me tissues as she manipulated my joints having told me the diagnosis...

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kenzie210866
kenzie210866
in reply to Jaxine

That’s all it takes; doctors just need to put themselves in their patients’ shoes for a second and it would make all the difference. I wonder if my first rheumatologist had asked herself how she would have felt being spoken to the way she spoke to me, I expect she’d be rather embarrassed about it.

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Eiram50
Eiram50
in reply to Jaxine

I too am a social worker in a busy locality team (CP) and totally get what you’re saying! Heavy caseloads and the stresses this brings does not give us permission to be dismissive of people. A little understanding and kindness can change a persons day.

Marie

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Nessa28

I originally had a fabulous rheumatologist but his replacement I've seen twice . She has been dismissive and can't wait to get you out the door . As you all know I wrote and complained to PALS re diagnosis and treatment following my consultation with her 7/12/18 needless to say I've still not heard a thing . I'd laugh if it wasn't so serious . In response to your appointment that is so wrong to be treated like this on your initial appointment . I hope you get the answers and treatment asap 🤗💐

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sylvi

Complain to your PALS dpt where you can complain about the treatment you got. They arw usually manned nearby the reception.xxx

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Mmrr

People will differ in what they expect from their rheumatologist, and rheumatologists will differ in what they expect from the patients they see. But there are few things I expect many people share in what they would like to see, those of human decency and good standards of care.

I'm an old fashioned kinda girl who expects old fashioned skills of listening, observing, believing and clarifying and doing so with a respectful bedside manner. I don't expect perfection, but I do expect honesty when mistakes are made and a quick resolution of such. We all make mistakes.

Whilst I share the despondency of many in this site re: the state of the NHS, I don't accept anyone being rude, not giving time or just not listening. If Drs cannot see patients without being rude, they are in the wrong job. Full stop.

In my experience Drs with the above goid skills are in the minority, but be firm, question and keep repeating the health issues you are worried about. I did, got a few inappropriate comments in my GP notes, (I have all my notes via freedom of information requests) challenged the comments and we are now working together a bit better. I read up on everything before I consult the GP as it lessens the BS.

I was a lecturer for years and sometimes wanted to weep at the workload, the marking of 200 essays after a full weeks work, the queue of students outside the door with queries/worries or whatever. But I wasn't rude to students, (although sometimes I did put the answerphone on to get a but of respite to prepare/answer emails). Sometimes I had to say I just cannot deal with speaking to you right now, but I'll see after class....we all have to learn to manage the jobs we are in. Others will have similar stories of their workplace pressures.

My daughter graduated with a PHd last summer after 10 years studying, so far she has only managed to get zero hours contracts with Universities, she has moved countries to take up a 6 month contract. After prepping tutorials and marking her 'salary' works out at £3.50 per hour. Her situation is pretty normal. GPs are paid circa 3 times and rheumatologists 4 times the average salary of people often with longer training periods. That doesn't mean they should be abused, but they are paid exceptionally well for the long hours they work.

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Hidden
Hidden

I’m sorry you had that experience on your first appointment when you’re probably feeling scared and worried. Initially I saw the same rheumy each appointment but now I rarely see the same one twice so get treated differently each time as they all have differing views on what should happen next. So, I would say a good rheumy is one who is your rheumy who you see every time you go and has a chance to get to know you.

I hope your next appointment is a better experience x

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Gnarli

My first appointment was with the Rheumy consultant and she was brisk, cold and positively abrasive. As you said, it seemed she couldn't wait to get me out of her office. Since then I have seen her several more times and she was totally different. Kind, considerate and she listened! I thought that perhaps she had a bad day that first time or found it difficult to break bad news. Whatever it was then she has been lovely since. I hope yours is the same

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kenzie210866

You should leave a doctor’s appointment feeling better than when you went in, surely? Okay, I know that’s a bit simplistic, but I used to come home from every rheumatology appointment and cry because the consultant was so unhelpful and frankly a bit of a cow. I changed doctors and now I leave every appointment feeling more positive. That’s how it should be.

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Hessie5

Totally unacceptable. Nothing can excuse cold and rude behaviour, to add further to what we are going through. After all, they signed up to ’care’ for people, don't do the job if it is not best fit. We pay into a system that should be looking after us.

You should have left feeling better from you consultation. I am so frustrated when I am treated as a bother or dismissive, I go onto lodge a complaint.

I dearly hope you find someone with empathy and a heart.

Take care - Hessie

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Fra22-57

I used to think mine was good but he gets more and more patients to see that his time with me is now less.He never examines me now and spend all the time on his computer.He is very polite and says I am rare case with my certain disease and bulls me up saying he has used my case to speak of at conferences. Thing is he has also been so incompetent and lies alot.He is head rheumatologist so he is at both hospitals in my area.

Didn't get changed to good health in my xmas parcel from santa so I just press on .

I do think the work load decreases the personal care thou

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allanah

What have you decided to do out of interest ?

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jane1964

Hello I have more experience with rheumatologists than I would like to have had.I don't have rheumatoid arthritis but it is what I read first referred to check and it turned out to be the beginning of seeing 4 rheumatologists over 12 years being referred back by my wonderful GP 3 times and another liver consultant once.I suffered getting worse and worse having mis diagnosis twice first fibromyalgia which made me go any never believing that and suffer for years before I asked to go back when symptoms deteriorated then gout which wasted another couple of years and missed diagnosis once,at the beginning when to be fair symptoms were less obvious and they did spot the liver condition for which I am grateful.Finally saw a rheumatologist who listened to me believed me and ran more tests by this point I was very unwell ( felt absolutely awful was desperate )and needed steroids and Azathioprine.I have difficult multi immune diseases with sjogrens syndrome, vasculitis, mixed Connective tissue disease antiphosholipid syndrome, also some joint involvement which didnt show on x Ray or ultrasound but improvement in movement on Azathioprine showed it.The evidence of all this was there in my blood work when it was looked at properly.And all this despite a clear previously diagnosed autoimmune disease PBC and a strong family history of rheumatoid arthritis.What I would say is document your symptoms take photos and believe yourself you may have to be persistent to get answers. If you find things don't improve with this rheumatologist you can ask for a second opinion I would ask for that at one of the specialist centres of excellence don't wait like I did.I hope you get answers soon.Jane.

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scotslass333

Hi Jaxine, I feel for you too. Everything the others have said is spot on, I'm so lucky, my Rheumy is one in a million, we're always told our appts are only for 15 mins, but I go over that every time, and she never ever minds. I can also guarantee that each time I see her, I too end up in tears, and she is so patient and understanding. In fact, I have an appt with her tomorrow, and thank goodness becos my pain has been off the scale lately.

Hope you can at least speak to a rheumy nurse, in between appts with consultant. Maybe take someone with you next time you see consultant? It certainly helps.

All the best.

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