I need to Rant!

harmony
harmony Member Posts: 37
edited 4. Dec 2009, 11:38 in Living with Arthritis archive
Hi All,
Sorry about this but I need to Rant and Scream.
Had an appointment with my RA nurse, well I say mine, it would appear mine has left, and been replaced with a prison warder from Hell! :x
I had to do a 3 month assessment from being on Humira.
Today being a particular painful day I nearly jumped when she squeezed my knuckles ‘gently’ and then she accused me of saying they were painful before she had touched them! :cry: A few more attempts along this line and she was calling me a liar, needless to say that went down like a lead balloon! :x
On the assessment form they ask where you think your pain threshold is, as I said a painful day and so it was high. Had she asked me is it normally like that I could say no, most days it’s quite bearable, sore but bearable. She didn’t want to even document that. :?
How can these assessment forms be true if I have to take painkillers for other problems as well, and these are not taken into account either? :?
So the result is my ‘condition’ and response to Humira is being
re-assessed this week and I could end up taken off the drug just as I feel it is starting to work. :!: It would appear that the ‘prison warder’ only wants to hear about that precise moment and not how well or badly you are doing over a period of time. :?
In other words the NHS just wants boxes ticked and not to take note of any mitigating circumstances that might affect their tests. :x
Sorry about the rant, feel slightly better now and will let you know if ‘They’ keep me on Humira.

Harmony :)

Comments

  • mellman01
    mellman01 Member Posts: 5,303
    edited 30. Nov -1, 00:00
    Hi harmony sounds like a right old snap dragon, remember one thing in all of this and that's you have rights and at the end of the day ( I've always wanted to say that!) bottom line she has a care of duty towards you and if she's not up to muster then I would fire of an e mail or two and see what that does, how does this tie in with your GP does he have any say over what treatment you have can he overide her if she wants to change your meds against your will??.
  • tillytot41
    tillytot41 Member Posts: 48
    edited 30. Nov -1, 00:00
    Grrrrrrrrrrrrrrrrr poor you harmony she sounds such fun (NOT).How often do you have to see your RA nurse?I would think if she carries on like that i would complain,can you tell im practising being assertive here(just booked to go on a course).
    Sorry you had a bad experience(((((((((HUGS))))))))))
    Ali xx
  • ritwren
    ritwren Member Posts: 928
    edited 30. Nov -1, 00:00
    What a horrible experience you've had, things like that should'nt happen and you should'nt have been treated like that either.

    With regard them taking away your humaria, (sp) I've read other posts where this has happened, even if you are pleased overall with what it's doing for you. It all depends on the scores you get from answering the questions and if they don't show improvement then NICE or someone like that will not fund it and they may stop your treatment. I'm sure I've read that on here somewhere. Hopefully you will see someone else next visit and they will be able to properly assess how you're doing.
    Good luck
    rita
  • woodbon
    woodbon Member Posts: 4,969
    edited 30. Nov -1, 00:00
    Hi, I am so sorry that you've had such a bad experience. As I don't have ra, its not the sort of problem I have. It seems that the NHS has become, in lots of ways run by set questions and answers, to get the right ticks in the right boxes and not centred on the needs of the person they are treating. It must be the way the govenment likes to do things these days - just look at the benifit forms we have to fill in!

    I hope everything turns out OK for you in the end. :wink: love Suex
  • joyful164
    joyful164 Member Posts: 2,962
    edited 30. Nov -1, 00:00
    They have a form on the shelf as you approach our Rheumatology dept. You have to complete it stating the way you find the department!!!!!

    joy
  • harmony
    harmony Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi All
    Thanks for the good wishes, really cheered me up no end. As I said I have to wait until Wednesday until I know if I am staying on Humira or not.
    I did phone my consultant’s sec this afternoon and complain about ‘The Warden’s’ behaviour towards me this morning and how upset I was.
    This afternoon, I got a phone call from the warden :!: and ..... :o:o:o She apologised for her behaviour and comments. :!: :!: she also said she would do quote"Do everything I could to keep you on Humira" :!: :o
    We wait and see.....roll on the later posts.
    But Thank you all for your support it really means a lot to know that someone else is out there and taking note of someones hurt and pain. You guys are really wonderful and deserve recognition.
    Thanks again..... :)
    Harmony :D
  • tkachev
    tkachev Member Posts: 8,332
    edited 30. Nov -1, 00:00
    Maybe she was having a bad day! I must say I tend to avoid telling them the bad news incase they want to take me off Humira. My inflammation has gone up so I cant hide that but I had to make it clear that it was only a small increase in discomfort and most of my pain is localised(foot).
    There was a lady called Nimbus who came on the forum and was having the same problems and was threatened to be taken off her medication(I think it was Humira or similar) and that frightened me so I have been very conservative at my consultations since
    Best wishes
    Elizabeth
    Never be bullied into silence.
    Never allow yourself to be made a victim.
    Accept no ones definition of your life

    Define yourself........

    Harvey Fierstein
  • joyful164
    joyful164 Member Posts: 2,962
    edited 30. Nov -1, 00:00
    I'm pleased you managed to speak to her reasonably and get things sorted. It will help you relax a bit more otherwise you will send your pain level up more.
    It's awful when an appointment doesn't quite go the way you want it. I often wonder if they will take me off my MTX because there always seems a new area of inflammation, which starts a new kind of panic mode. I know I am uncomfortable at times but not to the searing throbbing pain level I was before so there has got to be an improvement. I then think of all the people I know and friends I have made on here and who are far worse than me and I count my blessings. At least I am walking, just.
    This cold weather doesn't help any of us and keeping warm is a struggle. All I can say is try not toworry. your are doing fine.

    love from Joy
  • ichabod6
    ichabod6 Member Posts: 963
    edited 30. Nov -1, 00:00
    My view of humira and indeed any medication that is prescribed for you is that if it is working for you and having beneficial effects for you,
    you will be kept on it.
    If not you rheumatology consultant will consider and prescribe other medication which may ultimately be more beneficial to you.
    The whole ethos of medication is trial and error. What works for some does not work for others. The consultant is the person with the knowledge to supervise your treatment in partnership with you. Your 3 monthly examination is only one of many things the consultant has to consider when doing this. The report of a nurse is in no way binding or over influential on the consultant.
    In any event most of the written report is completed by yourself. When you see your consultant say that the humira is kicking in and having a good effect for you. A face to face interview is far more reliable than a few written notes and ticked boxes.
    It's all about you. It's your condition and your treatment and your medical team should work in partnership with you. You have as big an input as that team.

    Ichabod.
  • bailey27
    bailey27 Member Posts: 689
    edited 30. Nov -1, 00:00
    ichabod6 wrote:
    My view of humira and indeed any medication that is prescribed for you is that if it is working for you and having beneficial effects for you,
    you will be kept on it.
    If not you rheumatology consultant will consider and prescribe other medication which may ultimately be more beneficial to you.
    The whole ethos of medication is trial and error. What works for some does not work for others. The consultant is the person with the knowledge to supervise your treatment in partnership with you. Your 3 monthly examination is only one of many things the consultant has to consider when doing this. The report of a nurse is in no way binding or over influential on the consultant.
    In any event most of the written report is completed by yourself. When you see your consultant say that the humira is kicking in and having a good effect for you. A face to face interview is far more reliable than a few written notes and ticked boxes.
    It's all about you. It's your condition and your treatment and your medical team should work in partnership with you. You have as big an input as that team.

    Ichabod.

    DITO this totally. You are more important than what a nurse can say.
    Don't fix whats not broke! - maybe wrong words to use on this forum, but you get my meaning!! :wink:
  • harmony
    harmony Member Posts: 37
    edited 30. Nov -1, 00:00
    Hi Guys,
    Well Wednesday has been and gone, and I've had a phone call from 'she who must be obeyed' : :wink:
    | It would appear that my consultant is going to keep m on Humira for the next 2 months until I see him and he will do my next assessment and not ‘The Nurse’. Good news there. :)
    My PCT (Hertfordshire) have very strong views by all accounts and it was only for the fact that this last month (out of the 3 I have been on Humira for) seems to be starting to work that they will let this go another 2 months and then re-assess :!:
    It also seems that at the same time I was having this assessment ‘The Nurse’ was also doing a test for Fibromyalgia. :o As if RA isn’t enough :!:
    Anyway guys we wait and see, but at the end of the day if I’m in less pain and I have a good Christmas then it’s been worth it.
    Thanks again for all the support given here.
    Have a pain free Christmas everyone
    Harmony
  • sharmaine
    sharmaine Member Posts: 1,638
    edited 30. Nov -1, 00:00
    Hi Harmony
    It doesn't sound as if this so called nurse did a good job of your assessment. I would complain and ask to see a doctor. How dare she call you a liar - that can't be right.

    You are right to rant. Can you do anything about your poor treatment?
    Sharmaine
    harmony wrote:
    Hi All,
    Sorry about this but I need to Rant and Scream.
    Had an appointment with my RA nurse, well I say mine, it would appear mine has left, and been replaced with a prison warder from Hell! :x
    I had to do a 3 month assessment from being on Humira.
    Today being a particular painful day I nearly jumped when she squeezed my knuckles ‘gently’ and then she accused me of saying they were painful before she had touched them! :cry: A few more attempts along this line and she was calling me a liar, needless to say that went down like a lead balloon! :x
    On the assessment form they ask where you think your pain threshold is, as I said a painful day and so it was high. Had she asked me is it normally like that I could say no, most days it’s quite bearable, sore but bearable. She didn’t want to even document that. :?
    How can these assessment forms be true if I have to take painkillers for other problems as well, and these are not taken into account either? :?
    So the result is my ‘condition’ and response to Humira is being
    re-assessed this week and I could end up taken off the drug just as I feel it is starting to work. :!: It would appear that the ‘prison warder’ only wants to hear about that precise moment and not how well or badly you are doing over a period of time. :?
    In other words the NHS just wants boxes ticked and not to take note of any mitigating circumstances that might affect their tests. :x
    Sorry about the rant, feel slightly better now and will let you know if ‘They’ keep me on Humira.

    Harmony :)