There are some sick people out there – and I’m not talking about the ones with RA!

March 25, 2014 at 10:00 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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I got this in my email yesterday morning, purporting to be from NICE (National Institute for Health and Care Excellence). 

 

Dear [email address removed] We have been sent a sample of your blood analysis for further research. During the complete blood count (CBC) we have revealed that white blood cells is very low, and unfortunately we have a suspicion of a cancer. Wite Blood cells 1200 Low Hemoglobin 12 Normal Platelets 19000 Low We suggest you to print out your CBC test results and interpretations in attachment below and visit your family doctor as soon as possible Sincerely,Dr. Avery Ernie National Institute for Health and Care Excellence

My first instinct was to laugh – for so many reasons. Honestly, can’t these spammers do their research properly? NICE doesn’t stand for that at all – and your average doctor can probably spell ‘white’ too. Then there’s the fact that NICE don’t do any research or analyse any samples. (All they are there for, as far as I can see, is to decide if drugs are too expensive for patients to benefit from!) Not to mention the fact that blood samples don’t go whizzing around the country for ‘further research’ without my permission, and when they do, since I’m part of an epidemiological study, they are anonymised. 

However, my second reaction was absolute fury – I presume the ‘attached’ was some sort of virus or other nasty, so what if this had gone to some really vulnerable person, not overly familiar with silly spamming tactics and actually awaiting the results of blood tests for possible cancer? The last thing someone in that situation needs is some moron to cause their computer to crash or steal their bank details or whatever other nasty things these people do these days!

I was reading this morning about medieval punishment practices;  a seller of off wine for instance would be hauled to the pillory, forced to drink a draft of his off wine and have the rest poured over his head before being locked in to the pillory  – most unpleasant – but too good for these people, I can’t help thinking! I shall be daydreaming of suitable ways to punish these people if they’re ever caught! <evil grin>

 

The good, the bad and the mildly irritating

June 25, 2010 at 3:53 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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I was on my way to my six-monthly (ish) hospital appointment this morning, and feeling distinctly glum, most definitely not wanting to go, when the news came on the radio and cheered me up slightly. Some excellent news for UK RA patients generally, I’m delighted to say: NICE has reversed its ludicrous policy of refusing to treat patients who failed on one anti-TNF with another. Anti-TNFs are not all the same, so saying that because a patient fails on one they won’t benefit from a different one is patently absurd, but that’s exactly what NICE, the patently absurd National Institute for ‘Clinical Excellence’ had decided to do. From later this year though, patients who fail on one anti-TNF will be allowed another go. (I think only one more go, but that’s better than none!)

Hopefully I shall never need to worry about this from a personal point of view as I seem to be doing well on the methotrexate. Inevitably the three-week flare I’ve just come through has now passed (just in time for the hospital appointment, of course) and didn’t show up in the bloods, so it’s not being taken at all seriously. Still, on the bright side it DOES seem to be over, so next time I shall just have to gird my loins and nag the hospital while I’m HAVING a flare, if only so they get to see it!

So that was the mildly irritating.

The bad is physio – not my physio of course; she’s still lovely. But apparently, ‘In order to be in line with private practice’ they are going to restrict all patients to a maximum of six appointments before a re-referral is required. It’s a very confusing system which I’ll explain in another post, but I can probably get re-referred. However, if I normally have physio twice monthly, I’ll have to get rereferred every three months and then wait around five weeks for an appointment, where presumably I won’t be guaranteed to see my lovely physio and will be reassessed each time, even though after a couple of years I think between the two of us we have a pretty good idea of what works! (Anyway, more about this whinge later!) The bright side is that I have at least had her for around two years, and when I started seeing her I thought then that they’d kick me out after six appointments, so I suppose I can’t complain. (Oh wait – yes I can …)

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
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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.

The ramblings of a bewildered and broke Penguin

January 19, 2010 at 11:35 am | Posted in rheumatoid arthritis (RA) | 10 Comments
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Firstly a ‘big shout out’ to Warm Socks for reading comment replies. Well done to you,  m’dear! I also read them when I remember to tick the little box, but I usually don’t remember.

Secondly, for them as don’t keep up with comment replies, like me, tinglywinglypingly is a thing of the past – hurrah.

Thirdly, I had my methotrexate last night and, unlike last week, not only kept it down but slept like a log afterwards and feel great today. Middle-sized cat is also delighted, as he tends to sleep next to/on top of me, so he also got a good night. After a trip to the V-E-T yesterday he’s now costing me about SIXTY POUNDS A MONTH in medication … but of course he’s worth every penny, and more.

Hey ho – it’s only money … not as important as health.

I obviously value him more than NICE values me, or rather values other R.A. patients who are not so lucky as I am currently! This article in The Guardian tells an all too familiar story.

Tocilizumab (another biologic), which costs £9,000 per patient per year (so about the same per month as middle-sized cat costs me per year … but then consider the difference in resources between lil’ ol’ me and the British government … on second thoughts, maybe not; I’m not quite broke yet), is being given to patients in Scotland (and indeed most of the rest of Europe), but NASTY has decided once again that it’s too expensive for patients in England. And once again the fact that it could keep people in work and reduce the costs of unemployment benefit, keep them walking and reduce the cost of wheelchairs, keep them out of hospital and reduce the costs of round-the-clock healthcare … etc. etc. etc. has escaped them. It’s an argument I’ve had with them a few times before on this blog, here and here and

More evidence that Abatacept IS effective in treating R.A.

October 7, 2009 at 3:15 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Current NICE guidelines say that Abatacept (one of the many biologics, anti-TNFs) should not be used in R.A. patients who have not responded to other biologics. Now a Cochrane Review (a review designed to help policy makers and healthcare workers make decisions on what is and isn’t effective) says that Abatacept IS effective in R.A. treatment. NICE are already in the process of reviewing their current guidance, but a decision is not expected until June 2010. The review strongly recommends that for the moment Abatacept is not used WITH other biologics – but says nothing about use if other biologics have been tried and have failed, which suggests that perhaps NICE should be recommending it for those with rheumatoid arthritis who have failed on other anti-TNFs.

Like all anti-TNFs, how safe it is in the long term has not yet been established – because none of them have been around long enough, but the Cochrane review (by Dr. Lisa Maxwell in Ottawa) showed that patients given Abatacept were twice as likely to achieve a 50% improvement in symptoms such as pain and the number of tender and swollen joints.

In the meantime a study on intranasal administration of recombinant Human Cartilage glycoprotein-39 for treatment of R.A. has failed. Personally I don’t fancy a regular treatment via my nostrils … although if I had moderate to severe R.A. I guess I’d try anything once! However it didn’t show any improvement over placebo, so I dare say I will never need to try that one. Phew.

Another biologic makes the grade – but will NASTY sanction it?

October 6, 2009 at 7:23 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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Cimzia (certolizumab pegol), a biologic produced by UCB and administered by injection under the skin, has got the OK from the European Commission for use in rheumatoid arthritis. (It was approved by the FDA in the US in May.) It has been approved both as a combination therapy with MTX for those with moderate to severe active RA who haven’t responded to treatment with DMARDs, AND as a treatment on its own where a patient can’t use methotrexate.

Trials showed that Cimzia brought significant benefits to patients that lasted for more than two years. Clinical data also indicates that Cimzia stops disease progression – or did for the length of the trial, which was around two years.

Of course the big question for the UK (and it’s a big question for UCB as well since the UK market is quite a significant one) is will ‘NICE’ approve it for use on the NHS? I wouldn’t like to try and guess but it’ll be an interesting story to follow.

NICE refuses yet another drug for R.A.

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

Rheumatoid Arthritis on Women’s Hour

September 14, 2009 at 9:12 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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There was a little feature about R.A. on Women’s Hour on radio 4 a couple of weeks ago. Nothing Earth shatteringly new for those in the know, but quite interesting. It was talking about trialling the use of rituximab early on in the disease, instead of doing as NICE now recommend and not letting people have it until they’ve failed three or four other biologics. It’s here.

One bit that caught my ear was this, a quote from Dr John Isaacs at Newcastle: “One thing that all rheumatologists are pleased about is that NICE are confirming what we’ve been saying for years, which is that we need to be more aggressive with this disease. So previously patients like Wendy would be seen perhaps once every three months, or once every six months, and now we’re being told that certainly in the early stages of the disease we need to see patients every month, and if treatments aren’t working then we need to be escalating treatments, changing therapies …”

Well I’m not sure how pleased the Norfolk and Norwich are about the new guidelines. “We can’t possibly manage to see people every three months. We’ll see you every six months if you’re lucky.”

These are the sorts of things a positive thinking, celebratory penguin will be trying not to say in Spain next week!

Hospital appointment lost …

August 11, 2009 at 9:01 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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So, as I said in my last post, I got home from a cracking weekend away to find a letter telling me that due to my health professional being on annual leave, my hospital appointment for September 2009 was being postponed … for six months. Now it won’t surprise those of you who know me that I slightly lost my rag … it’s probably sitting somewhere with my marbles.

On Monday I phoned the hospital – the receptionist was suitably puzzled, perhaps even astonished, at the amount of delay, buy all she could do was put me through to the nurse practitioners’ secretary, and all she could do was add me to the cancellation list for September. ‘If you get to the top of the list, we’ll let you know and give you an appointment.’ She didn’t sound like she thought there was much chance of that.

So I asked her who I should make an official complaint to. She told me to contact the Patient Liaison Service and she put me through. This actually was NOT how you make an official complaint, but it was nevertheless a wise decision on her part as when I eventually spoke to the PaLS lady she was excellent – and sympathetic, unlike the secretary who had probably worked as a doctor’s receptionist before getting this job, and so I ended up NOT putting in a complaint…

But before I spoke to the excellent PaLS lady, I had to do the usual leaving of a message on the answerphone, waiting for a response, not getting a response, writing a stinking complaint letter and sending it off.

In my stinking letter I explained that not only was I having this appointment canceled, but in fact when I looked back at my diary it seemed that I had actually only seen the n.p., in April 2008. This is someone I am supposed to see every six months, interspersed with six-monthly consultant appointments so that I see a ‘rheumatology health professional’ every three months.

So … if I didn’t get to see her until March 2010, that would be a gap of just under two years in what is supposed to be a six-monthly appointment schedule!

I also pointed out that NICE guidelines state that a patient whose RA is not under control should be seen monthly. I didn’t hold out much hope for that argument, and I was right – ‘Well they are only guidelines, and we have to do what we can, but …’ but hey, when NICE are on your side you’ve got make the most of it! It doesn’t happen often!

Aaaaaanyway … the rather lovely PaLS lady (who turned out to be an RA patient herself) sent my letter to the RA manager, the nurse practitioner etc. and got a response back for me within 48 hours, and phoned me for a chat. She agreed with me that saying ‘your health professional is on annual leave’ when in fact what had happened was that yes, she was on annual leave but they’d also had one nurse leave suddenly and another drastically reduce her hours (and that from a group that was only four-strong in the first place), did nothing to endear them to their patients.

She explained that if I had a serious problem I could contact the helpline. I explained (again – it was in my letter) that actually things were pretty good at the moment, BUT the registrar I saw in June said that I should see someone in three months (i.e. September) to see if I needed to up my methotrexate if it was working. Now I wouldn’t see anyone until December (my consultant appointment) and I didn’t think that was good enough. Then she said that she thought the nurse p. could probably actually sort that out over the phone and up the MTX after talking to me if she thought that was the right thing to do.

Now that would suit me just fine – getting it all sorted over the phone without having to drag myself into Norwich and waste an afternoon … so I said that was really useful to know and that I would therefore not be making an official complaint at this stage … and then we had a nice, friendly chat about RA and the local support group etc.

So it all ended very amicably and pleasantly and I went off a much happier penguin … and prepared to give ‘em hell at the beginning of September when they told me that actually they couldn’t do it over the phone. Cynical? Moi?

But wait … is that the mobile I hear ringing … Yes … it’s the nurse practitioner’s secretary …

See the next thrilling installment for what happened next …

A real breakthrough in RA treatment? Maybe!

June 19, 2009 at 5:28 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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Could the news that rituximab (MabThera) can provide dramatically improved results in patients with early rheumatoid arthritis be a real breakthrough at last? The thing I find most encouraging about the research, carried out by Prof. Paul-Peter Tak from the University of Amsterdam, is that it’s research based on a drug that’s already out there in the market, not something we’ll have to wait ten years for approval for.

Tak (which means thank-you in Norwegian, something many of us might want to say to him if this research is taken through into treatment) showed that treating patients early with rituximab and methotrexate in combination,  can virtually stop the disease in its tracks. The 755 patient trial of recently diagnosed patients, most of whom had suffered the disease for less than a year, showed that nearly 2.5 times as many patients on the treatment went in to remission, compared with those treated with methotrexate alone.

Of course, like all RA treatments (to date, anyway) it doesn’t work for everyone, and so far the investigation has only been on recently diagnosed patients, but it certainly sounds encouraging. At the moment in the UK rituximab is only prescribed after failure of anti-TNF therapy, but NICE might actually take this option seriously as the cost of rituximab is about a quarter of an anti-TNF so it makes economic as well as medical sense to try rituximab first.

Here’s hoping NICE do something sensible for once!

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