Disappointed Rheumy visit today

Today I went for my 3 month visit to see my consultant, not only was she running an hour and a half late I only saw her for 10 minutes. I've had some problems with MTX so they had to stop it and then start on a lower dose again, thinking today she would suggest something else along side, she just said ' well your inflamatory markers are okay so you have no imflamation and was going to send me on my way. She did not even ask to examine me. I then showed her my hands which are really puffy and have little use of some of my fingers and thumb. She then gave me very painful steriod injections in the joints and said keep on the MTX for another 3 months and we will see what happens.I told her I was feeling really sick she than told me to increase my folic acid. I felt it was a real battle today they just don't seem to realise that we live for these appointments, to add to it she said to the nurse I am writing so fast to catch up I don't think they will understand what I am writing.

I felt so valued.

Even if no one reads this I feel better for typing it.(In pain)

Christine.

23 Replies

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  • Oh Christine, I'm sorry you're having such a difficult time. It's awful when rheumy appointments go like this, especially not even examining you. As you say, it's so frustrating when you describe what's happening with your health and don't feel you're being listened to properly or that they are taking it seriously enough. It sounds as if the consultant was too rushed and didn't have enough time. Sending you hugs,

    Francherry

  • Christine, sending you my hugs love.Im so sorry that happened to you. Yes, thats seems to be the norm now be late reviewing your patients and you just can feel that they're speeding it up and you leave the clinic unsattisfied and with pain. All i can say to you is what i always advice my patients. Ring pt advocate of that area or make use of suggestion box, just tell anyone. Its not about putting the blame its about improving the services and getting the care you trully deserve. God that sort of situation makes me angry. I see my rheumy on ground floor and i worked in gynae 8th floor. The rheumy and gynae belongs to the same outpatient/specialist clinic but I actually told the unit manager that there is no point them asking me to come at 8.15 if they dont see me til 9.30 I have a clinic to run and in your case you were in pain. I said consultants arrive after the registrar and they dont see patients right away, they have their cups of tea or having chit chats (there are some good ones)..hello you should have had your breakfast at home..theres a bloody line up already. So they were told, I am popular here now for making noises, not just for me but I am a patients advocate. We have a reporting system here and I use it quite a lot.

    Even in my clinic, I tell the doctors to be on time and if they're late they better have a good excuse and i make patients cups of tea while waiting. Nothing worse than trying to psych yourself up to have colposcopy done after an abnormal smear and then bloody doctors are late and nobodys telling you whats happening.

    So please, let your doctor or anyone know you were not happy with your treatement that day. They are too busy that they need reminding that it is their job to make you feel okay, pain free and sattsfied, if not they havent done their job full stop. take care.Lizaxxx

  • Well said Liza,you are a exception and a wonderful one to have in the nhs.I wish we had a few more of you about.I have a good rheumy team but even that could be improved,because i talk to my nurse and i know how hard it is for drs and nurses. I agree there are some who shouldn't be in the nhs.THey have no understanding and empathy with their patients. xxxx

  • Thank you sylvi. I am privileged to be a member of this site and very glad to have met everyone :).Lizaxx

  • Ditto to Sylvi's comments great having you part of this site

    and wise advice for us all. X

  • Thank you Jim :).

  • yep it seems we all only get 10min and it is realy a bug bear to wait for appointments only to get that amount of time its wrong

    dont ever get ill in britain who said that was it when margret took over the running of the country then nhs is not what itn used to be

  • Its horrible getting the brush off from medical professionals when you feel there are unanswered questions isn't it? Sorry you have had this experience. I wonder if it helps if they know we come here to NRAS because we can rate our doctors and the service we receive more easily now though? My consultant certainly seemed more careful to explain things and talk things through once I told him I was writing something for the NRAS magazine last year.

    But then I only see mine once every 6 to 8 months at best and have no rheumy nurse so in this sense you are pretty fortunate - although of course its better to have quality consultations than quantity of them. Hope the next one goes better and suggest you give some feedback wherever possible so this doctor gets a reality check. Tilda x

  • Oh Christine, I can really understand your disappointment. I used to see a non-listening rheumatologist and it was awful. To them a three-month review is frequent, to us it's a huge gap, especially when we are struggling with drugs, pain etc.

    Take care,

    Dotty x

  • Hi Ellingham,big big hugssssss to u,I'm sorry to hear of ur treatment,it's terrible I know how it feels cause my consultant at west Middlesex Hosp is as bad n they don't ever see u befor 1 to 1 and a half hour late n with all ur aches n pains they jus don't listen n u r out in five minutes,they diagnosed me with RA n was given a high dose of MXT n was constantly in pain n nausea ,aftr 6 mnths she says I don't hav RA n stop everything but I hav fibromyalgia n the GP will explain everything,I was out in 5minutes n left thinking ....I was struggling for 6mnths n now u tell me it's not.....jus b strong swthrt n loads of luv to u....

  • Christine, do you have a contact number for your Rheumy nurse? I have to psyche myself up to make contact in between appointments but the more obvious it is that an appointment was unsatisfactory, the more justified I feel in phoning with specific requests or questions and expecting some action or promise of action.

    I'd say see the appointment as a starting point. Keep an eye on the results of blood tests to see if ESR or CRP does rise, indicating rising inflammation. Keep a diary of sickness or any other problems or side effects. As soon as you are sure that you are not feeling any better ring the department and tell them, using the appointment as a reference point e.g. 'Dr x told me to increase my Folic Acid but after x weeks of that I still feel nauseous ....' or 'there wasn't time in my last appointment for a proper examination but Dr x hoped the steroid injection would help my hands but it hasn't ....'.

    However I hope you do feel better but if you don't then keep the ball rolling in between appointments - there's nothing to lose!

    Luce x

  • Like others have said I really don't think the docs understand exactly how important these appointments are for us. I only see mine every 6 - 9 months, and yes it's usually only 10 minutes, but at least she listens and pays attention when I do see her. Have you thought about writing to the consultant to tell her how this rushed appointment made you feel? maybe it won't make a difference, but it might make you feel better and less powerless? And who knows, maybe she'll read it and feel guilty about her behaviour? Polly

  • I can only agree with what others have said. This illness is bad enough to deal with. It would so help if we got the care and attention we should have.

    Think we should start a name and sham department on here. May be that would make these consultants and nurses sit up and take notice. Sorry getting very cross not long had an experience with nurse !!!xx

  • Good idea to name and shame but I dont think we can do that on this site.

    I get the feeling the list would be too long anyway!!!!

  • Sadly yes to many to name. !!!!!!!!!!!!!

  • Totally empathise with you. My last visit in March I was kept waiting for almost 2 hours and then i got about 45 or 50 seconds !! with the guy, who was someone I'd never seen before !!! I was steaming! Even the nurse was shocked how quickly I was out. As you say, we wait so long for these visits. My experience almost mirrors yours, they never seem to want to hear what you've got to say and just look at blood results, think you're okay and off you go. I lodged a complaint about my last visit as one of the nurses let slip he was always late and sometimes it was because he insisted on an hour lunch break no matter how late he was running! The complaint was heard and I have been given another appt. early May (he was going to make me wait 9 months for another visit). My usual cons. is on maternity leave so he is just a sub. thankfully! Our hospital has a program where you can leave comments or complaints so I used it and was surprised it worked! Next visit i will have my list of questions/concerns and this time I'm going to make sure they all get addressed.

    10 minutes is usually what I get, but people before me have been in there longer, so i think you and I must be too polite - we should perhaps be more insistent on making ourselves heard.

    I hope your next visit improves. If you need to, go to your GP with your problem and see if you can get another visit? Seems to vary from area to area.

    You arent alone in this.

    Lynn x

  • Wish I saw my consultant for 10 mins! Saw mine and must have been in there for all of 4 mins. This was only my second visit, I had to see another consultant for my first visit which was about 15mins, (mine was off sick). I was told another consultant was kind enough to stand in, yes he was kind but I had been waiting more than 3 months for an appointment... I left my 4 min consultation rather upset, I had a list of questions which didnt get answered. When he told me he was putting me on sulphalazine he said I would have to see my GP to arranged frequent blood tests, when I asked why he seemed annoyed and said well you don't want your kidneys and liver fucked up do you. Another question of mine was equally insensitively dealt with. I have been suffering from hair loss and I enquired if sulphalazine would make this worse. His answer was what do you prefare your hair or been pain free? I was too upset to think of an answer, which should have been both. My GP's letter came today, which was quite informative in which I have found out my HLA B27 is positive, and my ANA is negative. Been on the i pad all morning, things are starting to finally make some sense, no thanks to the consultant though!! Oh and yes he was over an hour late for my appointment so probably doing catch up!!! Does any one know how long a consultation should last? Sorry I have gone on a bit but still fuming. Valerie

  • I commend you for showing her your hands and continuing on with the visit! I bring a list and I am fortunate,, as my rheumy knows I don't stop until I've read it all! I also was her first patient and have built a genuine rapport with her. That is so important. Also get to know all who work around your Doc. Ask about their families, pictures they have near their desk or stations. Comment on their new do or wardrobe or even their smile. I knock my socks off for them and they honor me as well. Give it a try. It is even harder when we are in pain but they see you clearer as they look in your eyes when you look in their eyes. Love and Blessings!

  • I am appalled to read of so much bad treatment on this blog.. perhaps we should start our own unoffical hospital star system of one to five stars??!!, for rheum department , length of appointment, , etc.

    eg my hospital is not v accessible an urgent appointment is five months!!, waiting time in the outpatients is usually an hour!!, confidence in consultant .low, access to biologics poor!!. therefore 2*

  • The star system does actaully exist my hosp is 3.5 stars

  • HI.rry to hear you had a bad visit.i have had quite a few myself.Dont give up and dont be soft.i take the mxt as well and i fond the self injection is great it by passes the gut so you are not as sick.i take 15mg.per wk.iby injection in the stomach.ask to try it .Hope this helps.

  • Thank you everyone for all your comments and your support I am overwhelmed by the responses, it gives me faith that people do care. I will speak to my Rhemy nurse next appointment as I see her next time and she is very caring.

    Christine

  • So sorry as others have said but think most of us feel like that, I spoke to my "Help Line" on Tues my daughter only heard my side but she said"she didn't let you finish a sentance mum" as I've said before if they could feel our pain I'm sure they would listen more. Hope you are feeling better, it does help to come here at least you know you're not alone. xxxx

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