NICE is as blinkered as ever: nothing has changed since 2010

June 25, 2015 at 6:34 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , , , ,

In January 2010 I ‘reported’ that NICE were refusing to consider treatment of early RA with biologics because one had to ‘fail’ on two other DMARDS first, which would take a minimum of six months, more likely a year. NICE (amusing standing for National Institute for Clinical Excellence, actually have very little interest in clinical excellence; their job is to stop the NHS ‘spending too much’ on drugs etc.)

Now, five-and-a-half years later, after threatening to take biologics away from RA patients altogether because they weren’t ‘cost effective’, NICE has kindly decided to leave things as they are for the moment, according to to a joint press release from NRAS, Arthritis Care and the British Society of Rheumatology (BSR), which you can read here on the BSR website (and also on the NRAS and Arthritis Care sites).

I was pleased to see that Professor Simon Bowman, the President of the BSR, is saying pretty much what I was saying five-and-a-half years ago … because there’s a chance that people at NICE might actually listen to him! He says, quoting the press release:

‘It is false economy not to treat patients with moderate disease with biologic therapy when standard DMARDS fail, as these patients will be higher users of healthcare resources. These patients will require more attendance to primary and secondary care, and are more likely to develop co-morbidities such as osteoporosis, heart disease and have more surgery.’

The press release continues with more things I was saying back then: ‘They are also much more likely to lose their jobs, causing financial hardship […] The personal costs to the individual, the NHS, the impact on the rest of their family and the direct cost to the exchequer in lost productivity and benefits claims is massive.’

Judi Rhys, Chief Executive of Arthritis Care, added ‘NICE does not take account of costs such as reduced hospital bed days or the benefit of people getting back into work. We believe those with moderate RA require better access to these drugs. Not only will it improve lives, but it also makes economic sense.’

Here here! It’s good to see the charities fighting back in language that NICE might understand! Of course it won’t alter the problem that the NHS is completely ‘siloed’ from the Department for Work and Pensions who deal with benefits etc., social services etc. So as far as NICE is concerned, as long as the NHS is ‘saving money’, the fact that there are huge costs to individuals, businesses, the DWP etc. is really irrelevant.

Advertisements

NICE fiddles while RA burns a hole in the economy and our joints

January 30, 2010 at 12:00 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
Tags: , , , , , , , , , , , , , , , , ,

I got my shiny new NRAS magazine through the post today. Great to see an article by Rheumatoid Arthritis Guy in there! Well done RA Guy! But there’s always something in there to get me aeriated, and the first magazine of 2010 was no exception!

Interesting also to see a two-page spread on the ‘European Fit for Work Report’. Frankly, I’m not sure there were that many surprises in there, although I was a bit surprised at the number of people who become ‘work disabled’. Apparently 40% leave work altogether within 5 years of diagnosis, which is not happy reading. However, it appears that the main reason for this is people being diagnosed and treated too late or incorrectly. The report recommended ‘new and more inclusive methods to evaluate the cost-effectiveness of treating musculo-skeletal diseases in particular; one that considers more than the up-front costs of medical expenditure and incorporates wider social and economic factors.’ No kidding. In other words, this report recommends doing exactly what NICE doesn’t do. The article goes on to say that ‘NICE in the UK has already begun such a deliberation, although no decision has been reached to date.’ No surprise there then!

Now, my honorable friends, please turn to page 12 of your NRAS magazine. Don’t have one? Not to worry – here’s the headline: ‘People on Enbrel stay in work longer’. It goes on to state that a 500-person study (the COMET study if anyone’s inclined to look it up) showed that those with active early RA were three times less likely to stop working if treated with MTX and Enbrel, rather than MTX alone. Absenteeism was also reduced by almost 50% for those on the combination therapy. But here’s the rub – NICE won’t allow anyone to start on a combination therapy like this until they have been proved unresponsive to at least two other DMARDS including methotrexate … so when does early stop being early? It takes, I would think from my own experience, at least six months to show that a DMARD is not working for you, because it can take them that long to start working. So you’re diagnosed (probably not immediately), you’re given a DMARD if you’re lucky, perhaps hydroxychloroquine, for six months; it doesn’t work. You try MTX (either on its own or in combination with HCQ) for another six months. That doesn’t work either. You’ve now been diagnosed for at least a year. Is this still early enough to count for this study? Perhaps it is. If so, fair enough. If not then are NICE ruining people’s chances of staying healthy yet again. I don’t know the answer – I just pose the question.

And finally to a little article by a brave lady called Jean Burke, who works with NICE to provide a patient viewpoint in their deliberations. Rather her than me but I am full of admiration. Apparently she was asked by a member of an appraisal committee ‘Surely a twenty percent increase in quality of life isn’t worth bothering about?’ Well, I suppose that’s why they need the patient viewpoint. If you’re reading this blog as someone with RA I imagine you’ll see it her way immediately; I know I did. She points out that if the extra 20% means she can make a cup of tea in the morning, go to work or walk to the shops then yes, it’s worth it!

So long as NICE remains in its ivory tower, untouched by all these deliberations about the socioeconomic effects of diseases and so on, I simply cannot see how the system can ever work effectively.

NICE refuses yet another drug for R.A.

October 2, 2009 at 5:36 pm | Posted in Me, rheumatoid arthritis (RA) | 9 Comments
Tags: , , , , , , , , , , , ,

NICE have rejected yet another R.A. drug – this time for ‘moderate to severe R.A.’ It’s RoActemra (tocilizumab), known as Actemra in the U.S. apparently.

OK, so right now this isn’t a huge personal concern for me – apart from the ‘scrofulous pustule’ and other minor unpleasant side effects, the methotrexate is doing its job; but it’s a huge concern for R.A. patients in the U.K. in general, and potentially also for me personally in the future.

Here’s a link to an article about it, as there’s no point in me saying everything that’s already been said … and that I’ve already said about other drugs on this blog! In brief, and I quote: “the Committee has concluded that, at an approximate cost of £9,295 a year for a patient weighing approximately 70 kg, the therapy is just too expensive for use on the NHS and would not represent a cost-effective use of resources.”

I’d better start losing weight now, as if I ever need anti-TNFs in future NICE will probably decide it’s too expensive to fund overweight patients, as underweight patients need less drug! Well I suppose if NICE are inadvertently making me lose weight, that’s one positive benefit of them!

New NICE guidelines on RA

March 9, 2009 at 9:56 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , , , , , , , , , , , ,

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 (www.rheumatoid.org.uk) “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
Tags: , , , , , , ,

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
Tags: , , , , , , , , , , ,

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’.

Keeping fit with RA

September 26, 2018 at 6:16 pm | Posted in rheumatoid arthritis (RA) | 5 Comments

So Tuesday’s prompt for RA Blog Week 2018 was about how we stay fit with RA. Ha! I’ve never been fit in my life – however, I am, I believe, getting fitTER. The main RA-related thing I’ve been doing is one-to-one Pilates classes with a lady who specialises in helping patients with various joint problems back to fitness. I must have been doing that for a couple of years now and she’s marvelous! Her main tenets are if it hurts, DON’T DO IT, and while things aren’t hurting, build up the muscles around the joints so that when the next flair happens the muscles in the rest of the body can cope better with, for example, lugging my big bod around when the knee’s bad. I go once a week (approximately, if I’m not on holiday, she’s not on holiday etc.) to a fully equipped Pilates studio in Norwich and get myself hooked up to all sorts of weird and wonderful springs and rods and things, and strengthen away for an hour – and have FUN. We’re both gigglers and sometimes the other teachers/students must wonder what on earth is going on!

The other thing I’m doing is losing weight – not by any miracle drug or miracle regime. Simply by eating less and moving more. It seems to be working for me – SLOOOOOOOOOWLY but it’s working. I’ve lost 19lb since March in a fairly steady decline, although it has slowed after the first 5 or 6 lb just fell straight off!

Obviously the less extraneous weight you have pushing down on a flaring joint, the better you’re going to feel, so I’m slooooooooooooowly getting read of that extraneous weight. Sadly I have a long way to go – but happily it’s working.

Eating less involves not eating the things that I’m tempted by, such as chocolate, cakes, anything sweet, in the week, and limiting it to one or two at weekends. Of course I’d lose weight faster for a bit if  I cut all that bad and lovely stuff out completely … but then I’d just fall of the wagon big-time and put it all back on again. I’m seeing this 5 days of sensible eating and 2 days of SLIGHTLY less sensible eating as more of a lifestyle change than a diet, and therefore something I can and will keep up.

Moving more involves really trying to get out for a little walk first thing in the morning before work and another one at lunchtime. My RA is VERY mild and well controlled but I’m still not really in a position where I can more ‘serious’ exercise and you couldn’t get me into a gym for a million pounds! I really don’t know how that’s going to go once winter kicks in. It’s hard enough to do the first thing in the morning one now, with bright sunshine and 9 degree temperatures. What about when it rains and it’s minus 5? I don’t know! Also, as from October, I shall be working from home rather than from an office a couple of miles down the road, so will I be able to push myself out of my cozy house for a ‘nice’ walk in the snow and ice? I doubt it. I’m thinking exercise vids may be the way to go for at least some of the winter!

So wish me luck for the next few months and then hopefully I can get back to really regular walks in the spring!

When Polly met Carla (the sequel)

August 13, 2018 at 12:23 pm | Posted in rheumatoid arthritis (RA) | 5 Comments

So, what was that rare treat you had Polly Penguin, I hear you all crying? Well, no, I don’t actually because the title kind of gives it away … YES! For the second time ever, two years after the original When Polly Met Carla, Carla and I managed to meet up, during a brief drop in to the UK for Carla and Hubby. I’m very flattered that they arrived in Heathrow one day and then had six hours of train rides the next day to come and see me! It was so good to meet up with Carla (and hubby) again and catch up on all the news … and luckily the pub/bar/restaurant we’d picked had sticky toffee pudding to die for. (Carla would have been very disappointed if that hadn’t been the case … apparently you don’t get right over in the US! <grin>)

Among other things I got to here more about all these great patient advocacy meet-ups you guys have over there  … and that brings me to a BIG THANK YOU, to Carla for organising it, Wren for the amazing drawing (as ever) and all you folk that kindly signed it at one of the meetings and sent lovely messages! What is it? I (once again don’t really) hear you cry. It’s this fantastic Wren original card:

Wren Carla Card

inside card

Isn’t that great? Wren said she started the card when it was raining buckets on this side of the pond and she thought she’d provide some inner sunshine with a nice summery, flowery picture – but when it arrived we were in full heatwave mode. Still, a nice, summery card was entirely appropriate for a heatwave and definitely is doing its inner-sunshine providing job now, when it’s been raining consistently for a couple of days!

So thank you again all who signed it, thank you so much Wren for the lovely card and Carla for organising it and of course hand-delivering it! 🙂

Maybe one day I’ll get to meet some more of you in person – that would be great!

Please stop stealing my blog posts

June 13, 2018 at 10:03 am | Posted in rheumatoid arthritis (RA) | 3 Comments

This is a blog about sites that steal other people’s content to earn them a profit through rather dodgy advertising – you know the sort of thing – ‘Get a million dollars of free goods on Amazon: click here’ or ‘Lose 36lb in 3 days just by clicking this link’. They feed on the gullibility of naive people, and oddly enough, that’s not what motivates me to write and not what I want my writing used for, thank you very much. It’s not that I think many people are actually reading my content on these sites but that’s not the point!

One such example appears to be Health and Fitness Recipes .com* – I’m not writing it out as a proper web address because the last thing I want is a link to the site! However, I’m publishing these here to see if they automatically scrape this one too. Then if anyone reads it there they will know what’s going on!

I’m not sure what triggers the site to be scraped – perhaps some keywords like medical, doctor, health, fitness, RA, rheumatoid arthritis, surgery, GP … who knows. There’s a tasty little smorgasbord of keywords for you though, if you want to steal this one, guys.  Continue Reading Please stop stealing my blog posts…

Quick update

June 12, 2018 at 12:26 pm | Posted in rheumatoid arthritis (RA) | 6 Comments

On the bright, Pollyanna side, I managed to have an enjoyable, if sedentary, weekend! I did pretty much nothing but rest – rest and read books, rest on a chaise longue in the sunshine, rest and chat to my mum, rest and watch telly, rest and do some drawing and painting, rest and do some embroidery … SLEEEEEEEEEEP! Hubby was marvelous and did … well, everything else really!! And yes, my knee is very much better! The steroids (and rest) definitely helped.

Continue Reading Quick update…

Next Page »

Create a free website or blog at WordPress.com.
Entries and comments feeds.