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.

Crazy searches

January 29, 2010 at 6:21 pm | Posted in rheumatoid arthritis (RA) | 3 Comments

There was a rash of posts a little while ago about the things people search for to stumble across our blogs. Alas, at the time I didn’t have any particularly wacky searches, but now I have! These are two of my top searches in recent days: “Japanese girl” and “whether the weather be not, whether the weather be cold, whether the weather be hot, we’ll weather the weather, whatever the whether, whether we like it or not… ;-)” I bet they’re disappointed on looking up Japanese girl when they stumble across my embroidery of an old Japanese print! As to the other one, I love the idea that someone typed all that in as one search phrase!

I’m kind of relieved that another top search is ‘RA blogs’ so they’re not all quite so wide of the mark. ;o)

Sick, sick, sick …

January 29, 2010 at 2:45 pm | Posted in Me | 13 Comments
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No I’m not actually sick, I’m just sick to death of the way hormones seem to rule my life. Until Wednesday I’d been menstruating pretty much constantly since before Christmas.  By Sunday last I looked and felt like death warmed up, was bursting in to tears at the slightest provocation (or no provocation) and figured it was time I saw the doc. I knew I’d have trouble when she recommended a tablet that messes with the hormones, but heck, what else are you supposed to do stop a continuous period? So I bit the bullet and went on to Norethisterone (synthetic progesterone). I was a good girl – I didn’t even look at the side effects when I started it on Tuesday. I didn’t even look to see it was synthetic progesterone at the time.

Well the good news is it worked like magic – by Wednesday my seemingly never-ending period had stopped, the hot flushes hadn’t come back and I had very few RA symptoms. By yesterday I felt tired but so much better than I had been feeling. Then last night I woke up at two in the morning with a gnawing hunger pang in my belly – I lay in bed fantasising about porridge with tons of Golden Syrup on it! Fortunately Middle-size Cat and Enormous Cat were both firmly on top of me, purring and being cute, so I resisted the temptation as I didn’t want to disturb them. (Note, disturbing hubby didn’t even enter into the equation – awful, aren’t I? Then again, not much does disturb hubby once he’s asleep!) It’ll pass, I thought.

I woke up again at about six-thirty with a really awful gnawing hunger pang in my belly again! Hmm, I thought, this isn’t good. Heck, it’s Friday. Let’s go wild and have some porridge (instead of the usual and rather better for me Bran Flakes). I had some porridge. The hunger pangs didn’t go away. I made my lunch – beef salad. Normally when I’m making my lunch the absolute last thing I want to do there and then, straight after breakfast, is eat it. Today I could have eaten the whole damn lot. (I didn’t, but I could have done.) Tiny and Middle-sized cats were lucky to get their usual rations of my lunch today!

The gnawing hunger pang in my belly has NOT gone away. I ate a mid-morning snack of soya nuts, I had another slightly later morning snack of a few grapes and some dates. I had an apple. (All this before lunch!) Still gnawing hunger pang in my belly.

I had my lunch. Gnawing hunger pang in my belly. I hate to admit this but I then went to the local bakery. I’m not going to admit to what I bought (and ate) but suffice it to say that Mrs Baker would have been quite shocked if she’d known I was off back to the office to eat it all there and then, but that’s what happened. So would hubby, for that matter. He would have rather hoped I might have brought a bun home for him.  (Sorry darling!)

Guess what? Gnawing hunger pang in my belly – still. My helpful friend Weeny’s response was, ‘You’re hungry? So what’s new?’ (She’s renowned for her sympathy skills – her hubby and I tease her regularly about their lack!) The thing is this isn’t just hungry – it’s like a pain, it has to be pandered to; it’s constantly demanding. I can think of nothing but food. I just want to eat everything in sight. I look at my half-cup of cold coffee and picture a big hot chocolate swirling with cream and marshmallows; I look at the snow swirling around outside and think of ice cream; I don’t quite look at ‘the boss’ and think ‘roast beef’ but believe me I’m not that far from it. And to add insult to injury I’m doing a transcription  all about chocolate!! (I kid you not.)

You know what? I don’t think I’ll be taking any more Norethisterone!  I looked at the side effects this morning and sure enough weight gain and appetite change were nestled amongst them. I’ll put up with a constant period, I’ll live with anaemia and fatigue if I have to, but I really can’t cope with any more of this!

Woohoo – go Wren and Warm Socks!

January 29, 2010 at 12:47 pm | Posted in rheumatoid arthritis (RA) | 2 Comments

Well done to Warm Socks with ∞-itis and Wren with Rhemablog for getting to the finals for Best Patient Blog at MedGadget.com. Both great blogs by fantastic, inspirational people. Now they NEED YOUR VOTE! Vote for them here. You can only do one vote per day per computer – but you could always use two computers or swap day to day if you like them both – as I do.

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

Tingly wingly pingly

January 15, 2010 at 3:23 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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That’s what a friend of mine (I’m sure Maggie can guess who) has started calling me, since I mentioned this strange tingling in my hands and wrists that’s started this morning and won’t go away. It’s both hands, so figure it’s not just a random trapped nerve thing. Most likely it’s swelling in my elbows or shoulders caused by the R.A. Yes, that’s the R.A. that’s supposed to be under control with the MTX. Hrumph!! I will be bothered to phone the R.A. Helpline next week.

Hmm, maybe if I repeat ten times I might actually do it. Some sort of mantra or affirmation:

I will be bothered to phone the R.A. Helpline next week.
I will be bothered to phone the R.A. Helpline next week.
I will be bothered to phone the R.A. Helpline next week.
I will be bothered to phone the R.A. Helpline next week.
I will be bothered to phone the R.A. Helpline next week.
I will be bothered to phone the R.A. Helpline next week.
I will be bothered to phone the R.A. Helpline next week.
I will be bothered to phone the R.A. Helpline next week.
I will be bothered to phone the R.A. Helpline next week.
I will be bothered to phone the R.A. Helpline next week.

I wonder if copy and paste was cheating though?

The hidden costs of even mild R.A.

January 15, 2010 at 11:11 am | Posted in rheumatoid arthritis (RA) | 6 Comments
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I’m part of the Norfolk Arthritis Register (NOAR) study, which is an epidemiological study around rheumatoid arthritis. They look into all sorts of things, physical, mental and social, that affect R.A. patients, from an epidemiological standpoint – i.e. they look at lots of us and then see what the statistics say. In spite of the old ‘lies, damn lies and statistics’ quote, they produce some very interesting results.

One of the bits of research they did, before I was involved, was around the hidden costs of R.A. and it’s something I’ve been thinking about a lot lately. Even mild R.A. leads to an extraordinary amount of hidden costs, even in this country with our ‘free healthcare’. I’m trying to compile a list of those hidden costs for someone like me with mild R.A. – I’d be interested in any additions people might think of, so please comment if any come to mind! Later on, when I have the list as complete as I can make it, I’m going to try and price it. I think that might be quite frightening.

Here’s what I’ve got so far:

  • Over the counter medications such as paracetamol, stomach settlers etc. not prescribed by the doc
  • Time off work due to sickness
  • Time of work to attend hospital appointments (consultant, nurse, physio, OT etc.)
  • Travel costs to attend hospital, since I live in a rural area and hospitals are 30 miles for consultant/nurse and ten miles or so for OT/physio.
  • Aids such as jar openers, tin openers etc. (Some of these are free through OT services, some aren’t.) I have compression gloves from OT for instance, but they’re starting to get a bit baggy/stretchy after less than a week, so I might invest in some good quality ones!
  • An occasional one only, but cost of trips etc. cancelled due to a flare!

I’m sure there are more – will add them as I think of them or as people comment with suggestions! Some, like cost of transport because one can’t drive, I haven’t included because they haven’t actually happened to me so far!

Wax Bath Therapy, Compression Gloves and … stuff

January 12, 2010 at 8:03 pm | Posted in rheumatoid arthritis (RA) | 4 Comments

Well I had my OT appointment yesterday and my first wax bath therapy treatment for the RA in my hands. Mmmmmmmmm … ‘heaven, I’m in heaven’ … or at least I was for about twenty minutes yesterday!

The theory behind the wax bath therapy is, as I understand it, that the hands, having been nicely warmed for a few minutes, are more flexible and stretchy, but that wears off fairly fast; however, over time, given several treatments, one is able to do more stretching of the hands and so lasting benefit builds up. Something like that, anyway.

The OT also gave me some compression gloves to try out, and has promised that if they work she will get me some fingerless ones so that I can actually work in them. Well, they do seem to help, if one day’s on and off testing counts for anything. Ugly as sin though. I told ‘the boss’ that if anyone knocked on the office door she would have to answer because I’d be too embarrassed. Hmm. Who was it that was ranting away about how we need to be more open about having RA and educate other people? Oops.

Must see if Funk Arthur has any more attractive versions, or look up the ones R.A. Guy was recommending. (Only of course now I can’t find his post!)

But back to the wax therapy. The OT (who’s lovely – we put the world to rights while I was sat doing nothing) said that I wouldn’t get any lasting benefit from this first treatment. Boy was she right! I woke up last night in agony – the worst hand pain I’ve ever had! I’m hoping this has nothing to do with the wax bath therapy and everything to do with the fact that the hot flushes have just started up again and the fact that I probably have very little methotrexate inside me after taking it last night and then having a massive stomach explosion!

I suppose I should phone the rheumy helpline and ask if I should take some more or something? My strapline for the year (which didn’t make it into my New Year’s Resolution list but sums that list up) is ‘be bothered’, but I couldn’t be bothered this morning, the way I was feeling!

Understanding R.A. – Buckle Me Up

January 9, 2010 at 12:03 am | Posted in rheumatoid arthritis (RA) | 1 Comment

Rheumatoid arthritis is a very hard disease to get to grips with – not just because one has to learn to live with the fact that it’s a progressive and incurable disease (at the moment), but because you just don’t know how it’s going to affect you day to day, and because everyone’s R.A. is different. If it’s hard for those of us who suffer from the darned thing, spare a moment to think how hard it is for those that don’t! We bloggers often vent our frustrations in our blogs about the lack of understanding from the general public, but if we don’t help them to understand then nobody will. Health professionals certainly won’t – they can’t; unless they have R.A. then they don’t know what it’s like themselves, and if they do have R.A. then their rheumatoid arthritis will affect them differently to the way that mine affects me or yours affects you. So it’s up to us, not to stop whinging, after all that’s one of the purposes of my blog, to get my whinges and frustrations out safely, but to at least take the time to put people straight when they make dumb or ignorant comments, not out of malice but simply because they don’t understand.

I get frustrated when my neighbour tells me that his mate down the road also has arthritis and that it was caused by him being overweight and if I lost weight I might be cured. I get frustrated when a friend tells me that she knows someone with rheumatoid arthritis and he’s obviously just putting it on and using it as an excuse because he says he can’t get out of bed in the mornings and go to work, but there he is in the pub in the evening playing darts. I get frustrated when my consultant tells me that, compared with most people they see in the rheumy department my R.A. really is peanuts. I get really frustrated when friends tell me all I have to do to get better is eat more sprouts or rub some magic potion into my joints.

I spend a lot of time getting frustrated but not nearly enough time putting all these misguided people right.

So it’s good to know that there’s a group out there who are going all out to set the record straight and to help to educate the general public and friends and relatives of all autoimmune arthritis sufferers (apparently ‘sufferer’ isn’t PC, but I’d say anyone with autoimmune arthritis (Rheumatoid Arthritis, Juvenile Arthritis, Psoriatic Arthritis, Reactive Arthritis, Ankylosing Spondylitis, Scleroderma, Systemic Lupus Erythematosis) is a sufferer, to one extent or another!) about what rheumatoid arthritis really is and what it does and how we live with it. I hope you’ll consider supporting them.

The “Buckle Me Up!” International Autoimmune Arthritis Movement (IAAM) is an up-and-coming, worldwide nonprofit which will focus exclusively on helping the autoimmune arthritis sufferer*. Their mission: committed to eliminating autoimmune arthritis, and diminishing the disability associated with it, by raising global awareness and improving the quality of life through education, partnerships and support. It is a nonprofit formed by autoimmune arthritis sufferers, run by autoimmune arthritis sufferers and, therefore, will continue to address the problems faced by autoimmune arthritis sufferers. This will partly take place by partnering with other organizations, and they have already joined forces with the Arthritis Foundation and are working on partnering with other arthritis-based charities both nationally and internationally. In addition to partnerships, a primary focus is to make a lot of noise, verbally and visually, by re-branding the misconceptions of the term “arthritis”. Examples include the published web-commercial series, “A Day with RA”, showing the realities of living with an autoimmune arthritis disease, developing the first official autoimmune arthritis charity bracelets, and being featured on MyRACentral.com and WebMDtv’s “RA in the News” (Summer 2009). They hope to continue this level of exposure in all autoimmune arthritis arenas, including creating web-series awareness commercials for each autoimmune arthritis condition.

If all the autoimmune arthritis sufferers around the world come together, we can make this a reality. But first, we must raise money to finance the legal fees and start up costs to become an official nonprofit. So, today, many autoimmune arthritis blogs are joining forces to reach out to our community of sufferers for help. The IAAM is asking for $1 donations to assist with these start up costs. Every dollar earned will bring us all one step closer to being understood.

To view a complete list of start up costs and to send your $1 donation, please visit the Bucklemeup website donation page.

Let’s all work together to bring awareness to our misunderstood conditions!

G.P. Practice – what’s gone wrong in this country

January 6, 2010 at 1:24 pm | Posted in rheumatoid arthritis (RA) | 1 Comment
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As usual, there’s something I’ve been trying and failing to put into words for ages, only to find that someone has done it very elegantly for me already! I’m going to copy it to our local practice manager (who is also a friend.)

I am not a fan of the Daily Mail, but I stumbled across an ‘Ask The Doctor’ article in their online paper because it was about R.A. Tagged onto the bottom of the article is this, which I’m going to quote in full, because it says everything I’ve been wanting to say for ages about continuity of care etc. (I’m not sure about the copyright implications here but I’m giving full reference to the original article by Dr Martin Scurr in the Mail Online (Wed Jan 6th), so hopefully it’s OK!

By the way… There was recently a conference organised by the manufacturers of over-the-counter medicines. Many of the great and the good attended – shadow health minister Mark Simmonds, and some of the leading lights from the Royal College of GPs.
The theme of the meeting was to change the way the public thinks about minor illness. There is a push to dissuade patients from consulting their doctors for what might seem to be small ailments, and to encourage self-diagnosis and treatment. It’s all about saving money.
But the involvement of the hallowed seniors of my profession – in what looks rather like a sales drive for those peddling over-the-counter medicines – has set me thinking.
In medicine, no complaint is defined as minor until it has been thought about, in context, with informed judgment. I was always taught that general practice is about the ongoing observation of someone’s health over a lifetime. A lot of apparently disconnected elements might add up to quite a lot.
Yes, I believe in personal responsibility for health – doctors are only guides on a rocky path. But now the leaders in our profession seem to be saying it’s time for patients to look after themselves – implying that doctors have created a culture of dependency. It’s just not so. The problem with academics and medical politicos is that most of them occupy those lofty positions because they opted out of full-time work at the coal face.
How many patients with acid reflux have Barrett’s oesophagus, which can lead to cancer? How many with indigestion have got helicobacter infection, which can lead to stomach cancer? And yet they are expected to go to the chemist. We are supposed to be entering a new decade, not heading back to the last century. We must retain our devotion to patients as guides on that rocky path.

Read more: http://www.dailymail.co.uk/health/article-1240626/Ask-doctor-Im-worried-Im-wrong-drugs-DVT.html#ixzz0bpcAgISV

I actually disagree about it being driven by the over-the-counter drug companies. I think it’s driven by the fact that there aren’t enough GPs to see the patients. Our practice has something like eight GPs for 20,000 registered patients, and although there are some patients registered that they never see (because they’re healthy) we have a high elderly population here and the practice is very over-stretched, but there’s no more funding available; so the government thinks the answer is to send us all into the chemist for an aspirin.

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