We’re off to see the Wizard … or at least to Future of Health Conference 2014

November 20, 2014 at 4:15 pm | Posted in rheumatoid arthritis (RA), Me, arthrits, rheumatoid arthritis, fibromyalgia, joint pai | Leave a comment
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I’m on my way to the bright lights, big city of London for the Future of Health Conference 2014. And if Simon Stevens can pull off his Five-Year Forward View then he will indeed be a Wizard – and not just a Wizard of Oz.

The plan has a lot of good things. One is a focus on prevention – something really fairly new to the NHS if they’re going to take it seriously, not just say ‘Do you smoke? Do you want to stop?’ when you go for your flu jab at the GP, so that they can claim their smoking prevention bonus!

Then there’s a focus on patients gaining control of their own care. Sounds great – but what does it actually mean? Maybe I’ll find out on the train down as this is my planned reading matter.

Then they want to break down barriers in the NHS e.g. between GPs and hospitals, doctors and social services etc. Well I don’t think that’s anything new on the wish list front – it remains to be seen whether they can actually change deeply embedded cultures to get it done!

GPs are going to be given the option to combine with other specialists, e.g. mental health and social care, to form ‘Multispecialty Community Providers’. Hang on – isn’t this just the old consortium idea under a fancy new name? Sprinkle a little magic name dust over an old idea and see if it blooms into a beautiful new service.

There’s other stuff too – if you’re interested go and read my planned reading material link above – but those are the bits that resonate with me.

This tweet by the King’s Fund, an independent charity focussing on improving UK healthcare, focuses on where the money’s going to come from – always  a good question in the NHS, and even more so in this economic climate!

Part of the new plan involves ‘managing demand’ and while I’m not sure  I agree with everything in the link below, there are some good points, and some points I haven’t quite got my head around yet.

I can’t help thinking managing resources (not just human resources) and managing burnout should also be high on the agenda.

This is certainly not just an American issue. It’s something we patients see all the time. It’s also not just in doctors. Some of my previous posts about nurse practitioners and even physiotherapists would suggest that it’s ‘health care professional burnout’ that needs to be a concern, and is ladling on more models and targets etc. actually going to help with this? I doubt it.

And this from the King’s Fund again:

It’s suggesting that the NHS has too many doctors and not enough support staff including nurses, considering that the new plans focus on integrating more and using nurses for EVEN MORE stuff. I’m ambivalent about whether that’s such a great idea anyway, but if it’s going to happen then how could the NHS have predicted and trained the right number of doctors/nurses given that a) some bright spark comes in and shakes up the NHS every 3-4 years so no one can plan anything anyway and b) medical schools aren’t going to stop training doctors because they’re funded on how many doctors they train …

It makes my brain hurt! I’m so glad I’m not Simon Stevens. Good luck Mr Wizz. See you on Friday at the Future of Health Conference. 

 

 

Optimism around RA!

November 16, 2014 at 4:25 pm | Posted in rheumatoid arthritis (RA) | 7 Comments
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This morning while Cinder-hubby washed the kitchen floor, prepared tonight’s dinner for slow-cooking, tidied up and made bread, I sat in bed and played on my iPad. No doubt hubby thought I was wasting my life away again on Forge of Empires (not that he doesn’t play too!) But no, I was researching to try to be a bit more informed when I got to the Future of Health conference on Friday. I wish I was at the American College of Rheumatology Conference right now, putting faces to all my blogging friends’ names -Wren tells us that Carla is there, from Carla’s Corner, and All Flared Up‘s endlessly entertaining Amanda, and Cathy sharing her The Life and Adventures of Catepoo, not to mention the wonderful Rheumatoid Arthritis Guy (Eduardo it turns out, not Guy … :-) ) plus a whole bunch of others I really should get to know. But let that not take away the fact that I’m mighty chuffed to be going to Future of Health, even if I will be Billy No-Mates there. :-)

So, back to the research. Well what I’ve found out (or had confirmed?) about the NHS will be another post, but here’s the RA stuff I was looking at. What I found about the science of RA comes mostly from the ACR conference via twitter, but before we get into that there are two great posts I’ve come across recently on the importance of a scientific evidence base, from two great bloggers. There’s this article about why arthritis is so hard to study and cure from Kelly the RA Warrior, and then there’s Andrew the self-confessed science geek on evidence-based medicine and its importance for RA - a lovely, balanced article which clearly states what an evidence base is and doesn’t poo-poo alternatives either, but making the excellent point that what works for one individual won’t necessarily work for another, but that if there’s an evidence base to suggest it works for a large percentage that’s got to be a good thing, right? Right! So now – onto the evidence!

This is some brief thoughts on the exciting (relatively) new area of microbiomes – pretty complex stuff but a lovely, clear, optimistic summary with more to come. Take a look and then keep your ears open for more on this topic in future!

And then there’s this:

It seems there’s a bio-marker which can (hopefully) predict which patients are mostly likely to respond to biologics – so long as this is trialled properly and then, if successful, used with caution (i.e. it might not be right in 100% of cases) then that’ll be good news because those patients who are likely to respond can be treated quickly, and those who aren’t can be tried with more traditional drugs (good ol’ MTX for instance) which might control things better for them. It’s early days yet, hence all the ‘seems’ and ‘hopefully’s, but potentially good news.

OK, yes, slightly less encouraging in seeing that one’s disease is related to particular cancers, but the encouraging bit is that TNFi biologics have not been shown to be associated with increased risk in that area.

So there we are, that’s the good news about something that rarely has anything good about it. For my next post*, the mixed news about the dear ol’ NHS.

 

* I hope I haven’t doomed that post. Every time I say ‘I will write a post about …’ on this blog, somethign happens and it doesn’t get written!

I’m going to be a ‘Citizen Journalist’ at Future of Health 2014!

October 29, 2014 at 10:11 am | Posted in rheumatoid arthritis (RA) | 5 Comments

That’s my exciting news – so please follow me on Twitter: @Pollannpenguin – note the spelling – Pollyann not Pollyanna! What is a ‘citizen journalist?’ I hear you cry. Well, I’m not entirely sure yet and I’m not entirely sure that the Future of Health organisers are entirely sure either, but I think I can sum it up quite safely as ‘official twitterer’, or perhaps ‘official tweeter’ if you prefer. I like official twitterer better – I think it has a nice ring to it.

Now your next question, or perhaps actually your first question, is probably ‘What is Future of Health 2014′? It’s a biiiiiiiiiiiiiiiiiiiiiiiiiiig conference, held in Olympia, London, run by NHS England and University College London, with various other partners and sponsors of course, and the theme this year is all about getting above the rhetoric and the finances to try to look at person-centered healthcare – treating the patient as an individual etc. Well, if you’ve been reading this blog for any length of time you’ll know that’s something I’m ‘passionate’ about. (Although I hate the use of the word passionate in that sense, I think it’s justified here!)

How many posts have I got on here complaining about not being treated as an individual? Where do I start? Well, there was the time (actually times) my consultant pointed out, not for the first time, that I was ‘better off than most people I see in here.’ Then there were all time times the junior nurse ‘processing’ us prior to appointments made us feel like ducklings, or perhaps more like Turkeys at Christmas. There are lots of posts like this, but then that post ended fairly positively, and so did some others, like this one where I thought I’d fallen down Alice’s rabbit hole into NHS Wonderland. So, why can’t it always be like that? Well, lack of resources, long hours for nurses etc. And of course the NHS is broke.

So, I’m really looking forward to seeing if Future of Health 2014 can get beyond the rhetoric and beyond the finances and into the heads of people who say ‘Oh, I see worse than you all the time’ or show a complete lack of interest in their patients, or can’t be bothered to read the notes, or employ people who can’t actually speak or understand English well enough to help, and actually change things. I can’t wait!

Oh, and as an added bonus Ben Goldacre of Bad Science fame is talking, so that should be good too!

Tweeting Penguin

October 25, 2014 at 8:29 am | Posted in rheumatoid arthritis (RA) | 1 Comment

Well, at long last I have been dragged, kicking and screaming into the 21st century and I’m tweeting. Now, as soon as I can work out how to add a widget to my sidebar to put tweets in, you’ll be able to see them.

There’s quite an exciting reason why I’ve started tweeting – but more on that soon!

Please note, I’m @Pollyannpenguin – that’s POLLYANN NOT POLLYANNA – spot the subtle difference. That’s because Twitter only allows 15 characters for its usernames – should have gone for Polly_Penguin but didn’t think of it in time!

A bit of an update – I can’t believe it’s been so long!

October 15, 2014 at 1:35 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.

It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!

And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!

I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!

And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.

If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:

  • A blood sucker (aka phlebotomist)
  • The lab doing the work on the cholesterol
  • The hospital secretary
  • The surgery secretary who sent out the letter
  • The GP who had to call me back and discuss what we’d discussed three weeks before

‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.

On mended knee

June 22, 2014 at 8:57 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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Eye Church from the Pennings Nature Reserve

Eye Church from the Pennings Nature Reserve

Thanks for all the comments. Well, we made it back today, and successfully collected the fabric. (If you have no idea what I’m talking about then you’ll need to read the previous post!) Run4Joy – not sure about ‘spry’, the knee isn’t perfect … in fact neither knee is as good as it was a couple of days ago, but both are much, much better than yesterday!

Maggie, good point! We made it back and this time we got to the nature reserve – and very lovely (and flat) it was too. You can’t see in the picture above but between us and the church there’s a lovely river (the River Dove), teaming with damselflies and dragonflies. Most of the (very small) reserve is a wild flower meadow, so a jolly nice place to visit in the summer!

Carla, I’m sure you’re right – I had been overdoing it, so we had a very short and leisurely walk around the reserve and then headed back home and put our feet up. Poor Hubby, having done all the driving two days running … not to mention the drive up to the coast on Friday night for a walk around Cromer, Blakeney and Wells (did I mention I might have overdone it lately?), was more in need of a feet up afternoon than I was!

O’oh …

June 21, 2014 at 8:38 pm | Posted in rheumatoid arthritis (RA) | 5 Comments

Well, I’ve had no problem at all with giving up the anti-inflammatories … everything’s been fine – until this afternoon. Hubby and I decided to have a trip to the very pretty little town of Eye in Suffolk – about an hour away from home. It’s this pretty:Image

And if you think it looks a bit like Toytown, that’s because it’s taken from the top of the castle mott. That’s this:

IMG_3055

Quite a long way up … and I walked all the way up there, lots of steps … and down again, lots more steps, and I was fine.

And then we found a lovely little restaurant, Lindsay House, which I highly recommend if you ever find yourself in Eye on a Thursday to Sunday (they’re not open the other days) and had a first-class lunch … and I was fine.

And then … while sipping the surprisingly good decaf coffee (surprising because decaf coffee isn’t normally that good), my right knee started to twinge. And then it started to do more than twinge … which was a shame because we were planning to investigate the nearby nature reserve after lunch and instead we went back home. ‘Let’s see how it is on the way to the car park’ I said … but alas, it wasn’t good.

So I’ve managed not quite two weeks I think without anti-inflams, but I had to have one today. The good news is that the knee’s not been too bad since I got home.

I suspect going up the castle hill was a step (or two) too far! Hopefully I’ll be OK tomorrow … There’s a good chance we’re going back to Eye tomorrow. (It was nice but not THAT nice. However, I bought some rather unusual fabric in a shop there, and managed to leave it behind when we left the restaurant. DOH!)

 

 

Cutting back on the tabs!

June 13, 2014 at 10:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 9 Comments
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You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!

I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.

I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.

Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!

World Autoimmune Arthritis Day

April 21, 2014 at 8:16 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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waad

World Autoimmune Arthritis Day, a 47 hour ONLINE Virtual Convention that starts at 6am ET/USA (11am UK) May 19th and ends at 5am ET/USA (10am UK) May 21st.

Anyone interested in finding out more about autoimmune arthritises can join in, but you MUST register. If you want to attend the live events it’s $5 before May 19th or $7 ‘on the door’ (it’s all virtual of course!).HOWEVER you can also register for free if you just want access to the library of info and all the free resources, which will be downloadable until May 31st.

For info on all the great live events taking place, go to the registration page here.

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>

 

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