Disappointed with my hospital appointment... - NRAS

NRAS

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Disappointed with my hospital appointment...

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I had my regular visit to the RA consultant today and came away feeling that I had been kicked in the stomach. He hardly had anytime for me. I went in with a list of issues that I wanted to discuss and only managed one of them and that was the pain & discomfort I have with my neck & shoulders, he turned round and told me I was too young for Osteo and it wouldnt be RA either. Even thought if he checked my file I do have osteo in my toes and he had my neck x rayed last time round. He said an xray would be pointless as it wouldnt show anything. My bloods are doing well and doc passed comment that maybe I'm having them on, I wish I was!

I was in and out within 10 minutes & that included a steroid injection with the nurse which I didnt really need but doc knows best !!!

All I want is a definitive yes or no with the neck/shoulders as I am in pain all day every day and it is affecting my work (my work annoys it anyway).

I'm now considering going private to get answers as today's appointment really upset me. Note sure what to do

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19 Replies

That sounds truly horrible Widget! I can easily imagine an appointment with my rheumy going that way because he's always pretty good at stopping me from asking him things or from trying to explain anything in any depth so I relate entirely - although mine is a bit kinder I hope/ like to think?

I thought that pain in shoulders and neck were quite classic locations for RA to land? - I've certainly had pain in both for a few week long stretches but thankfully not at the moment. A lot of people on this forum complain of RA in shoulders I'm sure. And this "too young for Osteo" is nonsense - I know people on the Arthritis Care forum that I used to participate in were often telling of being diagnosed with OA in their early 20s and when I said that my GP had said I was too young for osteo at the age of 48 loads of people jumped on board and said "nonsense - i'm younger than you and I've been diagnosed with OA!" so I'd start looking for another rheumy. Can you not find someone else NHS? Tell your GP about this dreadful consultation and see if he/ she will refer you to another consultant perhaps? Meanwhile take care and try and rise above this stupid man! Gentle hugs, TTx

sciqueen profile image
sciqueen

Hi

It worrying and sounds all to familar. You know want I think?, it could be due to nhs targets as in they have to see certain amounts of us in a day before they can see to their privare patients.

Keep trying and don't think they mean to be rude, it's just that, they don't seem to have the time to answer questions. Your lucky as since diagnosis I have only seen my consultant once, I see my rheumy nurses more often. I wonder if we are the norm?

I have a closer relationship with my gp as I see her every 3 wks or so.

Try have all your question written down when you go in and don't allow them to side track you or fob you of next time.

Good luck

Sci x

Ella32 profile image
Ella32

Hi Widget

Sounds horrible, what a arse***e he was! I don't know how old you are? but i am 32, had Juvinile arthritis since i was 13, most of the people on this site are under 60. Arthritis RA, OA, juvinile, etc..... can attack at any age ;-(, it sounds like he didn't pay much attention in his degree, was he a consultant or junior doc??? either way i wouldn't see him again!

Unfortunately my juvinile RA has begun to turn into OA from all the desease activity.

Anyway try not to think about what happened with your appointment, your neck etc can be many things, from arthritis through to muscular, are you getting headaches with it? Have you tried heating in with a weatie or a hot water bottle, or freezing it with a cold pack? both can help different complaints and which ever one eases the pain can help diagnose what is causing it.

Ella xx

in reply to Ella32

"Sounds horrible, what a arse***e he was!"

_______________________________________________________

Ella, I understand you are a volunteer here. I also volunteer, but elsewhere. As a spokesperson for this site (Volunteer status) do you feel suitably informed, and qualified, to castigate a member of the medical profession by relating third party conversation, even to the point of questioning his/her attentiveness during medical training.

Perhaps the originator should have raised a formal complaint. For example, would they benefit from some support (from you?) in doing so? I have done so on occasion and it has been resolved to my satisfaction.

I also fail to understand your, presumably accurate, reference to "most people on this site are under 60"; I assume you have access to this information due to your status as a Volunteer. As I am over 60 (I am 66), I would be interested to review that age assessment data.

I look forward to hearing from you in due course. If necessary, could your response be routed via an accountable member of staff.

Thanking you in anticipation,

Brian

julieporter profile image
julieporter

Hi

I would go back to your GP and sak to be referred to another rhuematologist.The way you have been treated is shocking.As for not having OA my friend's daughter has OA in her knee and she is 15! You can also contact the PALS (patient advice) at your local hospital .Whatever you do don't let the ******* get you down

Best of Luck

Julie x

I had similar treatment from my rheumatologist when I confronted him, he explained that he can do nothing for my pain and suffering and his only interest is to get my das score lower as its been very high for a long time now, he said I can see my GP for pain relief etc and all he has concerens for it slowing the diease activity down, not great when you want to tell them how you feel, so from now on Ive told the nurse all about my symtpons etc and I do a letter for my rheumatologist and hand it him during my appointment,

not ideal but at least he cant say i aint told him something!

hope you get some answers soon xx take care xx

in reply to

Geez, Makes you wonder why he wants to be a Rheumatologist! He can do something about your pain, he doesn't want to bother!

Good idea with the letter, that way it is all documented. But what a shame you have to fight and argue and defend yourself to get treated properly.

Hope things are settling for you also! Loret xxx

Gina_K profile image
Gina_K

Hi,

That is outrageous! A steroid injection, just random, so shocked. I suppose if you'd had a mini melt down they would have called for psych comsult lol!! You can't win.

You will just have to go back thro your GP, you probably have compressed discs, my sister has those, and really it is just pain management & osteo.

Try not to worry hon, good ideas from previous replies, nothing I can add, the letter excellant idea.

Chin up.

xxx Gina.

in reply to Gina_K

I thought of that possibility also, having been there, now have plate and screws in my neck. But, first, let's hope it is something less imposing.

Could ask GP to have CT scan or MRI of that area done. Xrays would not show any impairment of discs and nerves.

Don't give up, so sorry you had such a poor start with a Rheumy, but there are some makes us wonder. All the best, Loret xx

sylvi profile image
sylvi

Ditto to what everyone else has said. You have the right to change consultants if you want to. I would certainly complain to pals and see what they say.

Its a disgrace in this day and age that there are still doctors out there who are unsympathic and unfeeling. Its only by listening to the patient that they get an idea of what is going on in your body.

Keep at them.

Sylvi.xx

Treesha profile image
Treesha

That is awful for you to be dismissed so off hand . I am 44 and when I was 35 I was told by a ortho consultant that I had osteo in my back. This came after years of back probs which started when I was 18! I get really annoyed with docs who make u feel like whining basket case!! Don't be put off ask gp to refer you to a different doc for a 2nd opinion

bevy profile image
bevy

I don't know how old you are but I was diagnosed as having OA in my neck in my 20's, probably due to bad lifting techniques we were taught back then at work, so what your Rheumatologist said is rubbish, in my opinion anyway. If he thought you were having him on then, to give you a Steriod injection like that is a disgrace!

I find it hard to explain to my consultant exactly how arthritis was affecting me on a daily basis, especially when you know you have limited time seeing them, so I wrote down a summary of how exactly the pain, fatigue etc was affecting me on a daily basis and I asked him to read it, I think he was quite shocked and now we have a plan of action as to how my treatment will go, increase Methotrxate to maximum dose, commence Sulphasalazine and up dose, then if this doesn't help, Biologics.

This isn't going to help you now, so my suggestion would be speak to your GP and also speak to the PALS at your hospital and see what advice they can give.

I hope you get the answers.

Treesha profile image
Treesha

P.s I suffer with terrible shoulder pain at times, this area was the most painful and unbearable before I was diagnosed with RA. Good luck xx

I read somewhere on NRAS that OA can be a secondary symptom of OA and that's certainly what is happening to my finger joints presently - I get a hard lump adjoining an RA swelling and they seem to hurt in different ways - once the hard lumps have sprung up they stop hurting but the soft ones swell up and hurt a lot. When I said to my rheumy that my life was being seriously affected by what was happening to me and then added "but I suppose that's what everyone you see tells you!" he replied "not unreasonably?!" and that was an indication that he is okay to me although he certainly doesn't have time for small talk.

The letter idea is really good - I emailed my head physio with photos of swelling a few times prior to my second consultation and she passed on my messages and photos so he didn't need to see them again and was aware of what I was going through before the consultation. If you have any way of getting messages across through your rheumy nurses or team that might be a good way to do it next time? TTx

SarahKate-NRAS profile image
SarahKate-NRAS

Hi Widget

I'm sorry to hear you feel so let down after your appointment. If you do decide it might be time for a second opinion there is a good webpage on the NHS Choices site that you might find helpful:

nhs.uk/chq/Pages/910.aspx

Kind regards

Sarah Kate

NRAS Helpline

oldtimer profile image
oldtimer

The rheumatologists in this area, and probably in lots of places, are under awful pressure from the management structure. They are being told that they must see a larger number of new patients to reduce the waiting time (that's a good idea), but to do this they must not review patients ( a bad idea for people who have,by definition, a long-term illness).

I've noticed how grumpy they have become over the last couple of years and reluctant to take new symptoms seriously. What the management want is for you, the patient, to be discharged and be re-referred by the GP when you develop a new problem - but if you turn up at your review appointment with something new, you can't be discharged - and the rheumys don't want to manage you like that either. They want to see you regularly to check that the management plan is working OK and protecting your joints, etc from further damage.

There just aren't not enough rheumys, and sometimes they lose their sense of humour like the rest of us or make stupid remarks which they would regret. If you got on OK with the rheumy before, it's worth trying again, if not try another.

Keep calm, write things down, take a friend with you. Tell someone as calmly as you can if you feel they are not taking you seriously. But I have been so angry that I have wept instead, so I know it's not easy.

I hope you find the answer to your problem, possibly via a 2nd opinion x

Widget profile image
Widget

Thank you all for your kind comments, it has helped me a lot. I have now written a letter to the rheumatologist in charge of my hospital, will let you know how I get on.

Thanks everyone again.

Barb66 profile image
Barb66

What is wrong with rheumatology - they seem to be a breed apart. Mine's as dismissive, patronising and unhelpful as yours too! Interestingly someone on this site suggested I look at polymyalgia rheumatica which starts in the shoulders and neck. My pain's all in my hands and feet so I don't think applies but your pain does seem to match what Ive read about PR and Im asking for a second opinion as I deserve better treatment than that and so do you

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