unfair hospital means test for enbrel

voyager21
voyager21 Member Posts: 4
hi everyone, i receive first class care from my hospital for my ra, but i feel that a practise they introduced a couple of years ago is unfair. after consultation involving feeling the joints and looking for swelling ect we are now asked on a scale of 1 to 100 how well we feel. 1 is good 100 is bad. you have to be very careful what number you give as there is a formula worked out that determins whether you stay on enbrel or lose it. it has got to the stage that if you have a tiny flare through probably trying to do to much (which is not the drugs fault) you could lose it as its very expensive. i think an examanation and chat about if you have experienced any problems is enough without having to guestimate youre own condition. does anyone know how the formulae works? problem is the enbrel is so good you sometimes forget and try and do to much.

Comments

  • helpline_team
    helpline_team Posts: 2,548
    edited 30. Nov -1, 00:00
    Hi
    I couldn't have explained the DAS any better than Scottishlass but this 'how are you on a scale of 1- 100' seems something extra to this.
    There is a measurement instrument called a Visual Analogue Scale (VAS) which is graded from 1 - 100 and is sometimes used to measure pain levels. The problem with this kind of system is that it is highly subjective and doesn't seem a scientific way of assessing whether someone receives a drug as important as Enbrel.
    You could ask your hospital what they have based their assessment on and is it something individual to them as we are not aware that this practice is in general use.
    Best wishes
    Val
  • voyager21
    voyager21 Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi
    I couldn't have explained the DAS any better than Scottishlass but this 'how are you on a scale of 1- 100' seems something extra to this.
    There is a measurement instrument called a Visual Analogue Scale (VAS) which is graded from 1 - 100 and is sometimes used to measure pain levels. The problem with this kind of system is that it is highly subjective and doesn't seem a scientific way of assessing whether someone receives a drug as important as Enbrel.
    You could ask your hospital what they have based their assessment on and is it something individual to them as we are not aware that this practice is in general use.
    Best wishes
    Val
    hi. thanks for replies, i have been on enbrel for about 3 years now. my ra was getting so bad it was time to try it, and it is brilliant. but without sounding too cynical it seems to me that owing to nhs cutbacks (its expensive) they will save if they can. i have attended my rheumatology clinic for 12yrs and have been well looked after, but the last 2 or 3yrs have been noticeably different, the slightest mention of any slight joint pain is met with a response of we may have to look at youre enbrel then. but surely when i attend the clinic and they examine my joints and discuss blood results with me ask how ifeel and i say good no problems, why do they then proceed to ask this 1 -100 question and then work out a calulation based on my reply. obviously if i wish to keep the enbrel i have to give a low number reply and thats neither right or honest. the only reason i may get any joint pain these days is because i sometime try and do too much (keen on diy) and feel it next day in the hands and fingers. my fault not the enbrel. i dare not say anything in case it is misinterpereted. sorry to go on so much.
  • helpline_team
    helpline_team Posts: 2,548
    edited 30. Nov -1, 00:00
    Hi Voyager,

    I wonder how best to help you? I wonder whether you may need to ask the clinic for a written description of their policy?

    Are you a member of a local arthritis group - and are in touch with anyone who's had this problem? If so they can get in touch with our policy and campaign team in our office for your region.

    If you are unhappy with how things are I wonder whether you have any choice of treatment centres in your local area.

    On a different tack, would you be interested in coming on a self-management course if you feel that pacing yourself is proving frustrating?

    all the best
    Guy
  • nimbus
    nimbus Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi, I'm new here. I've had RA for 20 years and been on biologics for the last 4.

    My daughter found this forum for me today when I came home from my hospital appt in a state, having been told by the consultant that my Enbrel would have to be stopped because of this pernicious 1-100 score. NICE are very strict about it, he said. He also said that, as I do not have the Rheumatoid Factor (even though I definitely have rheumatoid arthritis), there is nothing more he can do for me. No other treatment options. We've reached the end of the road.

    I was dumbstruck for a minute, then I said half jokingly that I'd better get some brochures for wheelchairs then, hadn't I. The look on his face was enough to wipe the smile off mine.

    He put me on Enbrel a couple of years ago when sulfasalazine, mtx, Humira and Rituximab had all failed and I was creeping about on sticks, unable to work, and with an ESR of 113. Within a few weeks it had transformed my life, and that improvement has in fact been maintained. Today's ESR was 38!

    I knew nothing about this cruel policy. If I had, I'd never have admitted I've felt stiff and achey for a few days, even though it's probably due to not taking my usual morning dose of ibuprofen lately because of indigestion. I have damage to my shoulders and other large joints (as a result of severe active disease before starting the Enbrel) so of course I'm stiff and achey! - It doesn't mean the Enbrel isn't working!

    Surely, if you have to get a certain DAS score twice before you're given anti-TNFs in the first place, you should also have the same number of assessments before they take you off it, not just one bad one.

    I've asked to be re-assessed in a month, and guess what? This time I'm going to take plenty of painkillers and anti-inflammatories first, and I'm going to LIE.
  • helpline_team
    helpline_team Posts: 2,548
    edited 30. Nov -1, 00:00
    Hi Nimbus

    Thanks for getting in touch with us. I am sorry to hear that you've had this shocking news, I too was dumbstruck when I read your post. And maybe just a little confused too. Is your rheumy really saying that because you were feeling achey on the day of your last consultation that means the enbrel isn't working and the fact that you've had your life transformed by taking this drug is completely irrelevant? Are NICE seriously suggesting that you're not allowed to have a bad day whilst taking enbrel?
    If this is the case I can understand that you're gutted and furious. I do think you need to seek clarification from your hospital as to why they place so much emphasis on the 1-100 score when there are so many other important factors to consider. And how they can justify leaving you completely without treatment. It might be worth your while contacting your regional Arthritis Care office and liaising with someone from the campaigns team.
    Or just stick to your plan of going to the next assessment with a minus score. Good luck and keep the faith.

    Best wishes
    Paul
  • nimbus
    nimbus Member Posts: 2
    edited 30. Nov -1, 00:00
    Hi Paul,

    Thanks so much for your post. It's really helped having input from someone who knows what RA is like and what is at stake here. My family are absolutely fantastic, and they don't deserve to face having a wife and mum who's about as active a dead spider, and about as crunched up. I can't let them go through that.

    In answer to your questions, yes, the consultant IS really saying that, and no, it doesn't matter that Enbrel has given me a future that's worth living. Apparently it's all about the score. If your score isn't the same or better than your initial one, then that is taken to mean that you're not maintaining the improvement. The question is, which is taken as the initial score? The ones that qualified me for Enbrel in the first place (astronomical) or the one taken after I'd been on it a while, which showed a massive improvement? I fear the latter. Which gives NICE a neat way to avoid keeping someone on an expensive drug, but is patently unfair. If they are going to do this scoring business, they need to compare a couple of scores a few weeks apart, against the score a patient has before starting Enbrel. Then this stupid situation wouldn't arise.

    I have a total knee replacement. I still limp a bit, and can't walk as far as I used to, but it's infinitely better than the misshapen, bone-grinding way it used to be before. Taking Enbrel away from me would be like removing the knee replacement because it's not as good as the one I was born with. And telling me I'll just have to sit. Or hop.

    Give me a break!!

    Well, they've picked the wrong lady cos I ain't gonna take this quietly. I'll definitely take up your suggestions, and I'll let you all know how I get on.

    Thanks again. x

Who's Online

2
C1955J
C1955J
+1 Guest