New NICE guidelines on RA

March 9, 2009 at 9:56 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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Well it seems that NICE (the ironically named and aforementioned National Institute for Clinical Excellence in the UK) have done an about face on their original ‘if you try one anti-TNF and it doesn’t work, tough. You can’t have another one, ner ner ne ner ner’. They’ve released new guidelines which are actually very positive. Of course it doesn’t mean that all rheumatology departments will agree with or follow their guidelines but I suppose it’s a start. Here are some of the positives (IMO), and it’s only a very select few that resonated with me:

  • Newly diagnosed people should be offered a combination DMARD therapy straight away, including methotrexate, ideally within three months of persistent symptoms. Well I don’t think I know ANYONE in the UK that was diagnosed within three months of persistent symptoms, let alone given the combination therapy option, but I’m glad if that’s going to change.
  • A level of what is acceptable disease control should be agreed with the patient in advance and worked towards. HA! I’ll believe that when I see it. The nearest we come to discussing acceptable levels is ‘Really you’re not too bad. I see much worse people in here every day.’ Well yeah, and there are people much worse off than me in Africa, and indeed round the corner, but that doesn’t mean I have to be content with my lot!
  • Quoting direct from the NRAS site ( “People with RA should have access to a multidisciplinary team (MDT); this should provide the opportunity for periodic assessments of the effect of the disease on their lives ( such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, mood, impact on sexual relationships) and access to a named member of the MDT (for example, the specialist nurse) who is responsible for coordinating their care.” Well yeah, I have access to a multidisciplinary team. Like any team, some are fabulous (physio that I see now, occupational therapist, even if we don’t share a sense of humour, rheumatology nurse at the GP surgery), and some aren’t. One that isn’t is the one who would no doubt be ‘coordinating my care’, gawd help me, if that happened; the RA Nurse Practitioner at the hospital. I can imagine quite vividly what her assessment would be like. She would read off a form in a board voice, ‘Are you depressed? No? Good. Do you have sex? No? Good.’ And of course what’s required is that thing they don’t have time for at hospital, a CONVERSATION!

And don’t get me started on the patient guidelines – well, if you know me you know I will no doubt get started on the patient guidelines when I have time and feel up to it, but just for now I’ll say they’re absolutely appalling, patronising, insulting …you get the idea. I asked Arthritis Care for a copy.  They were wonderfully efficient and friendly and sent me a copy return post, but having received them I took one look and went straight to the NICE website to find the health care professionals’ version – THAT actually told me things. I am sorry I caused paper and Arthritis Care money to be wasted. The patient guide had lots of nice white space and simple bullet points that told me that as a patient I should definitely have the right to treatment, possibly with drugs.  (OK, I exaggerate, but thin doesn’t even begin to describe the level of information!)

Here’s a a link to the patient guidelines if you want a laugh or cry. And here’s a link to the healthcare professional guidelines if you actually want some information.

I’m probably being a bit harsh, but it surely can’t be that hard to have something really, really simple with links or (see page whatever) if you want further detail, instead of assuming all patients are clueless. It’s as bad as the hospital rheumy nurse giving me the very useful methotrexate book and saying, ‘but really there’s more information here than you need’. I think I should be allowed to decide that.

NASTY NICE spreads its evil message

January 21, 2009 at 12:24 pm | Posted in Uncategorized | Leave a comment
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I’m currently working on a transcription about pharmaceutical companies, and it’s hardly giving away state secrets to mention that the guy has just said that many other countries are looking to NICE, (who base their decisions on whether a drug is approved in the UK on ‘health economics’ which boils down to ‘if it’s expensive then the answer is no). This is a real concern because if more and more countries move to this model then more and more pharmaceutical and biotech companies are going to have to reconsider whether it’s worth their while developing expensive biologics such as anti-TNFs. If they decide it’s NOT worth while, where does that leave us, the patients?

This is a particular concern for RA because frequently a drug that works well for a while in one patient suddenly stops working and they need to move on to something else. I’ve posted about that before I think, regarding the NICE decision (now withdrawn for reevaluation) to refuse a further anti-TNF treatment to someone that’s already had one). So if the companies stop developing these drugs, then we’ll be in the same situation down the line as we are now – a small number of drugs to try, if NASTY even let us try them, and then bang – here comes the wheelchair.

Sorry for the lack of positivity in this post – I’m quite stressed right now! But then again, I’m stressed because I have a lot of work and I’m GLAD I have a lot of work to keep the wolf from the door in the current economic climate!

Great news! NASTY are doing something NICE

November 26, 2008 at 11:59 am | Posted in rheumatoid arthritis (RA) | 1 Comment
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NRAS has just announced that NICE, the so called ‘National Institute for Health and Clinical Excellence’ and unaffectionately known as NASTY, which is in fact a national organisation for making sure expensive drugs don’t get paid for on the National Health Service, is re-opening its enquiry into whether a patient should be allowed to try another anti-TNF drug if the first fails to work.

Admittedly this is not a total reversal of their previous Final Appraisal Document, which indicated that patients should not be allowed to try another anti-TNF if the first failed, even in the face of overwhelming evidence that a) patients who ‘failed’ on one anti-TNF frequently had success with another, as these drugs are all quite differnet and work in different ways to each other and b) a patient who had failed on this last line of treatment was likely to already be suffering from severe RA (Because in this country you can’t have an anti-TNF at all on the NHS unless your RA is severe, even though evidence suggests that the earlier you treat with an anti-TNF, the more succesful you are).

The fact that NICE have ‘backed down’ to the extent of even revisiting this is great news though, and it proves that they are forced to listen when we all stand up and shout! Thanks to NRAS and all the other organisations who appealed against the Final Appraisal Document. No thanks to my MP, who did at least stir himself to write a letter to the Minister for Health but then failed to understand her response and sent me a useless letter saying something like ‘It’s OK – this hasn’t actually been decided yet’.

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