No improvement in patient access to RA treatment in seven years

February 23, 2010 at 2:25 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 2 Comments
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According to the Management in Practice website , which is a website for GP practice managers, the delay in getting patients proper rheumatoid arthritis treatment is the same as it was seven years ago. I suppose we should be grateful it hasn’t got worse!

Worryingly, to my mind, they say, “The Commons Public Accounts Committee has revealed that patients could suffer damage to their heart and lungs if access to treatment is delayed.” Well I have two things to say on that point. Firstly it’s not exactly a ‘revelation’ by the Commons Public Accounts Committee, but that’s more of a personal gripe about writing style than anything. More fundamentally there appears to be no recognition that patients could suffer permanent joint damage and a drastic reduction of quality of life if access to treatment is delayed. It’s as though ‘heart’ is the magic buzzword – if you put ‘heart’ in your article, at least when it comes to GPs who are forced to be target driven and probably have a big government target about reducing heart disease right now, then people might take action!

Mind you, they say that the average number of visits to a GP is four, before a patient is referred on to a specialist, and blame this on a lack of GP training. I would have thought that wasn’t soooo bad. It is hard to diagnose. It does vary enormously between patients. And it is possible to show symptoms that appear to be RA and then disappear – it happened to a good friend of mine. So I would have thought that an average of three visits (maybe not four) and attempts at less drastic treatment like ‘take Neurofen’ would not be unreasonable. I was very lucky – I had two visits before my referral and the GP spotted immediately that it might be RA and organised a blood test on the first visit. However if I’d been seronegative (negative RF test) then I shudder to think how long it might have taken!

Apparently, according to the same article on the same Commons report, “GPs receive on average only two hours of teaching on musculoskeletal conditions during their training, including minimal coverage of inflammatory arthritis.” I have to say I find that hard to believe, but if it’s true then it’s pretty scary, and it might explain why it’s taking 6-9 months to get people referred.

They also say that there’s a lack of awareness among the public of what symptoms to look for. I’m sure that’s true, and that does stop people going to pester their doctor when they have intermittent pain, but I suspect another thing that stops people going to see their GP is the difficulty in getting an appointment in the first place! But that’s another story for another post on another day …

Good old NRAS – Employment courses for UK-based RA sufferers

February 19, 2010 at 2:35 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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NRAS (the National Rheumatoid Arthritis Society) are running a series of 10 UK based events helping those with RA to keep working. The workshops will be held throughout 2010 in cities all across the UK. They’re open to anyone with RA and they’re free. Each workshop will allow you to get information about talking to their employer and colleagues about RA, including:

  • sharing practical tips based on real-life experience

  • talking to experts, from employment lawyers to occupational therapists
  • finding out more about what disability law means for you
  • finding out more about handling your RA treatment and work commitments

The workshops will be held in:

  • London 24th February; Bristol 10th March;
  • Cardiff 11th March;
  • Manchester 18th May;
  • Birmingham 19th May;
  • Nottingham 20th May;
  • Glasgow 22nd June;
  • Londonderry 23rd June;
  • Portsmouth 7th July;
  • Reading 28th September.

(I don’t know what time of day – ring them and find out!)

What a surprise, there’s nothing in East Anglia. There never is. Come on guys. We’re a big bulge on the side of little ol’ England with FOUR counties in it that you’re not represented in! And yet Reading, an easy, no-changes 20 minute train ride from London, has a course! OK, whine over, back to publicising NRAS, whom I have a VERY high regard for! Maybe I’ll go the Reading one as I have friends nearby. (Yes, Maggie, that’s a hint.)

Registration is happening now, so to register or to find out more, ring them on 0845 458 3969 or visit http://www.nras.org.uk to register on line.

Phew – coming out of a flare!

February 19, 2010 at 2:28 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
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At last I’m on my way out of a rather prolonged flare! While I’m sure that my consultant would be pleased to point out that it wasn’t much of a flare – I mean I didn’t even need a steroid shot – it was quite enough of one for me, thank you!

I had a very good birthday this year, in spite of being in the middle of the flare. Hubby had the day off too, which he doesn’t often manage, or at least not to coincide with mine, and we had a leisurely morning in Norwich including a trip to the Castle Museum and lunch at ‘The Waffle House’. Because of the whole flare thing we decided to come straight after an early lunch and I spent the afternoon lounging around in bed reading some of the many great books (mostly embroidery-related) that I’d got for presents, before heading off to Mum’s for a yummy meal in the evening. While I’d have liked to have been able to DO more on my birthday, it was still a jolly good day!

I suppose at least I’m finally learning to pace myself. Talking of which, the OT is NOT in my good books at the moment. I drove for forty minutes in stinking traffic through rain and hail and sleet and snow and fog (and semi-darkness for part of it) to get to my OT appointment only to be told, ‘She’s gone home’. Luckily for both of us I suppose a) I like her and b) I know she wouldn’t do that deliberately and c) she phoned and apologised profusely this morning.

I told her she could make it up to me by fitting me in between physio and a hair appointment next week, which she is doing. I shall come away feeling thoroughly pampered after all that: not quite a luxury spa treatment, and believe me, our local hospital doesn’t bear much resemblance to a luxury spa, but the closest I’m likely to get to one for a while!

Seeing RA under every stone

February 8, 2010 at 10:36 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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Is it me, or do others with rheumatoid arthritis see RA possibilities everywhere? I’ve told my bro, who has had neck pain for years and gets inflamed knuckles, that he really should get an RA test, even though it’s incredibly unlikely in a lad his age. (Unlikely but not impossible, as Rhuematoid Arthritis Guy can testify, and not an unreasonable suggestion given that he’s my brother and we do have family with RA.

However, it starts to get a bit silly when you’re sitting chatting to someone and start thinking ‘ooh, they get stiff in the mornings; could be RA.’ Well yeah, I have to remind myself, but when they say stiff they probably mean their muscles ache a bit because they went jogging last night, not that they can’t move their joints. But then again, RA is notoriously hard to diagnose, so when you’re sitting in the OT’s room chatting to another patient who is being treated for ‘carpel tunnel syndrome’ in both wrists, has been referred to the podiatrist because of pain in both feet, finds it hard to grip the steering wheel for any length of time, gets ‘dead arms’ in the middle of the night just like I do and finds it difficult to be a passenger even in the car for long journeys because when she gets out she’s ‘stiff all over’ … oh yes, and this all started with ‘the change’ … you can’t help wondering, can you? Or can you? Is it just me?

It’s hard to keep your mouth shut sometimes, but I managed it. For all I know she’s been thoroughly tested for it and hasn’t got it, but I couldn’t ask; I’d never even met her before that day. It makes me wonder even more because when I was diagnosed with RA I’d gone to the doctor saying, ‘Help – I think I’ve got carpel tunnel syndrome!’

I suppose I shall never know, and I really hope I’m barking up the wrong tree altogether, for her sake … but I can’t help wondering. Am I being silly?

Bloody marvelous, innit?

February 7, 2010 at 10:32 am | Posted in rheumatoid arthritis (RA) | 2 Comments
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Two days until my birthday and I’m right in the middle of a flare! On the bright side (which is what this blog is all about, although I have to remind myself of that right now), I’ve got most of a day off tomorrow and a full day off on Tuesday, and mum cooking dinner for us Tuesday night (chopped liver to start (sounds disgusting, ISN’T!), roast chicken and trimmings, and a naughty surprise desert have been requested).

Hubby has the day off on Tuesday, which makes a nice change. I just hope I feel up to doing something nice with the day!

Also my birthday starts early – Today Weeny, she of the not-so-great sympathy skills, and her hubby are taking us out to lunch. Pressies are piling up on the table downstairs and looking festive, ocassional bits of sunshine are peeping out through the gloom and the forecast for Tuesday is pretty good, so the outlook’s not as bad as it could be in spite of the various creaks and groans eminating from the penguin (and from hubby at having to listen to me creaking!)

I see trouble ahead (but then I usually do, don’t I?)

February 3, 2010 at 2:02 pm | Posted in rheumatoid arthritis (RA) | Leave a comment
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Apparently a simple blood test could predict RA years before symptoms appear. Now this could be a great thing – it could mean that in families where RA is known to be prevalent doctors could test those not yet showing symptoms and then keep a special eye on anyone who tests positive, to make sure they’re diagnosed as soon as symptoms start to appear, and treated accordingly. (I say in families where RA is prevalent because I can’t see it becoming a standard test that everyone receives, like TB used to be in this country.)

However, I can also see problems. One problem is that any test can be overly relied upon. I’d put money on it that if they’d tested me I would have come back negative, since my symptoms even now are so mild and my RF test result was so low (although positive … just…) Another problem is one that rears its ugly head almost any time such tests are mentioned … although oddly The Telegraph seem to have missed a trick this time in not mentioning it. It’s not great from a health insurance point of view, is it? Or rather it’s fantastic from a health insurers point of view. They just need to insist anyone they take on is tested first – if you’re positive, ‘We’ll insure you for anything except rheumatoid arthritis …’ Can’t you just see this one coming?

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