RA Blog Week Day 2: Active or Reactive Patient?

September 27, 2016 at 10:20 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Well, what a dismal excuse for a blogging penguin I am! I completely forget that yesterday was day one of RA blog week. I guess this makes me a reactive blogger, or at least definitely not an active one, but now it’s day 2 and we’re discussing active versus reactive patients. Well, I’d like to think I’ve been an active patient from day 1 … that’s what I’d LIKE to think … and indeed I was already looking into RA and researching it before I was diagnosed, because the GP had suggested it as a possibility and I wanted to find out more. Pretty active, eh? Maybe too active? Maybe I was filling my head with RA concerns and worries, and RA symptoms that I might then convince myself I had?

I don’t think that was the case though – I think it’s important to know as much about the disease as possible, as soon as possible – although having said that, there’s so much info out there of, shall we say a less positive nature, that it can be pretty scary! It’s important to remember that most people with only mild RA, such as myself, have other things to do than write about the fact that they’re actually pretty OK most of the time and have nothing much to say! Consequently the really useful and important blogs out there, and other patient inputs, such as the Health Unlocked network, are written by patients with serious problems and severe RA.

Nevertheless, I was active from the start, partly because it was such a relief to have even a possible diagnosis, after years of odd symptoms that had doctors scratching their heads and trying to tell me I was depressed. (I know depression, I’ve lived with people with depression, I have friends with severe depression … I can recognise it, and I’ve never been depressed in my life.)

Having said all that, it’s hard to remain an active patient, I find, once you’re a number in the NHS health system. It’s hard to keep going and pushing and demanding what you’ve already been promised but aren’t getting, when you’re already feeling at a bit of a low ebb on the health front. It’s hard to put up with appointments not when you need them but when the hospital feel like fitting you in, and with nurses who clearly don’t care. Even harder when you read about the system being hailed as a paragon of virtue in the US. The IDEA of the NHS is fabulous – the ideal is spot on – the actual working is a bit of a disaster, sad to say. There are times when I go along to an appointment with no more active thought in my mind than, ‘Let’s get this over with for another six months to a year.’

Having said that, I think I’m still pretty active. I’m still prepared to fight with the GP for a steroid shot when I’m darned sure that’s what I need … and I’ve been proved right so far. And I’m still interested in the disease from a standing back and looking at the biology, being fascinated with the latest research and possible cures on the horizon point of view.

I think this is a rather different picture of the ‘active patient’ than the one painted by many of my US blogging friends. The US health system is as badly flawed as our I think, but in very different ways. IF you have got health cover and can maintain it, you’ve probably got a relationship with your rhemmy doctor and can see them when you need it (or within a few days not a few months). If you go in with a list the doc is impressed whereas here they just roll their eyes and groan. But fundamentally to my mind an active patient is one who takes control of their RA as much as possible, and not just on the purely medical, drug-related, front, but also doing what we can to control it and minimise impact – such as exercising whenever possible, eating sensibly etc.

Why haven’t I talked more about that? Because I’m a bit rubbish at it! I have been trying to get a 1.5 mile walk in at lunchtime though – sometimes it’s only 1 mile, sometimes it’s half a mile, but at least I’m trying! As to eating … let’s not go there in this post. It’s something I do rather too well!

 

Two steps forward, one step back…

July 12, 2016 at 2:28 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
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Well, yes, the knee flare was completely over … for a few days. I was just getting back into the swing of things, gradually building back up the length of my lunchtime walks from a few hundred yards to half a mile, to three-quarters of a mile … thinking I’d soon be back to the mile-and half … and then I woke up in the middle of last Friday night thinking ‘Ouch!’ I’m telling myself it’s not really flaring this time … I haven’t decided yet whether I’m lying to myself.

I certainly don’t want another dose of prednisolone just yet… if they’d even give me one, which I doubt. Having said I never have side effects, Carla happened to mention that sleeplessness and irritability are major side effects of pred, and guess what… I had a really sleepless and irritable week while I was on it – I just failed to attribute it to the pred. Now it all makes sense. And OMG, the night sweats!! I had no idea that was a side effect and I get hot flushes anyway so I just thought, ‘Coo, bad hot flushes, much worse than usual!’ I was slightly worried that this was more than hot flushes as the ‘sweats’ part was a whole lot more dramatic …again, I hadn’t realised this is a common side effect of the pred.

Now I’m still ALL for the steroids – the side effects, now I realise  that’s what they were, were horrible, but the flare was much, much worse. The side effects I personally experienced were definitely the lesser of two evils and the pred let me carry on with my life and work, which I couldn’t have done without it. However, having said that, it does make the thought of another does quite unappealing if it can be avoided.

This time round the knee’s not hot, it’s not especially swollen and it’s not actually madly painful … it’s stiff but bendable, so really quite different to the definite flare I recently experienced.

Remember those knee-strengthening exercises I was doing, so that if I flared again I would have strength in the surrounding muscles and hopefully come out of it faster? No? Well you wouldn’t because I forgot to post about them. Unfortunately I have also forgotten to do them for the last few months, which is a pity really because I suspect that’s what the problem is now. As a horribly unfit person, having a bit over a week practically off my feet  means I do need to build up those muscles etc. again and I think the minor pain and stiffness I’m experiencing is probably all about that.

So, spend goodness knows how long fighting for a doc appointment, to be told, if I’m lucky, that they’ll refer me to physio, which will take six weeks minimum, by which time I hope I’ll have recovered anyway, or just carry on and hope? I’m going for the latter at the moment. Wish me luck!

The frustrations of not having a relationship with your doctor

June 29, 2016 at 4:32 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 7 Comments
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Thanks to the state of the NHS today (which, if you read this blog often you will know I harp on about endlessly) it is simply not possible to have a relationship with your GP these days (unless you’re incredibly lucky or live on some tiny island that actually has its own GP or something!) My GP practice has around 10 GPs plus locums. It’s pot luck who you get to speak to when you call and they phone you back, and then if they decide you should be seen you won’t see the person you spoke to that morning.

It also seems that they don’t have much of a relationship with the hospital and seem to have some sort of mythic belief in the power of the rheumatology helpline, as I’ve also mentioned before.

The myth

The patient calls the GP because they have an RA flare. This is a shocking waste of the GP’s time because these lucky, .lucky patients have an RA helpline that they can call and that will solve all their problems. They can speak to a lovely nurse* straight away and the nurse will wave her magic wand, waggle her magic pixie ears and solve the patient’s problem.

* Actually that’s the only true bit – the one we have at the moment IS a lovely nurse!

The facts

The lovely nurse, or even a secretary or receptionist, never EVER answers the helpline. It is an answerphone. That’s the way it’s set up. It’s not an answerphone on odd occasions when they’re exceptionally busy, it’s ALWAYS an answerphone. The message on the helpline says something like: ‘If you’re calling about a non-RA related problem, please call your GP. If you’re calling to change an appointment, please call reception. If you’re calling about an urgent need, please call your GP. If you’re calling to buy fish, please contact your fish monger. If you’re calling to moan about Brexit, please contact your MP. If you’re calling because you’re a moron, voted ‘Leave’ and can’t work out what a helpline is for, please call someone else and bother them. Now, if you really, really want to leave a message, we suppose you can. Give us your hospital number and name and telephone number and we’ll try to call you back in 24 hours – but no promises mind.’

I don’t know about you (actually I probably do, if you have RA) but I consider a flare pretty urgent.

While in an ideal world I would sit back on a couch, watch the telly and let my servants feed me grapes while I rested my knee and waited to see if it would clear up on its own, I do actually have a life (and no servants, and hubby is great but also has a life, and the cat just ain’t interested in helping), so I can’t just sit about and rest it. On that basis I can’t wait potentially 48 hours or more for the helpline to phone, and the nurse say, ‘Call your GP and get some prednisolone’ because then I can’t call the GP until Monday  as 48 hours is Friday morning and by the time I’ve heard back from the helpline the GP has run out of appointments. By that time I will have been flaring for over a week!

What Polly did Next

So … I went to the appointment grudgingly granted me by the grumpy GP. (Ooh, nice alteration that penguin!) Fortunately it’s with a much more pleasant locum GP than the one I spoke to on the phone. Unfortunately of course she doesn’t know me from Adam (or strictly speaking, as a doctor, she can probably spot I’m not Adam from the wobbly bits, so I should say she doesn’t know me from Eve). This means that she doesn’t know if I’m a moron or not, and therefore has to assume I am, as we always have to cater for the lowest common denominator.

‘How can I help you?’

‘I’m having an RA flare in my knees, as usually particularly in my left knee. It’s stiff, not very flexible and painful at times.’

‘Have you called the helpline, because really -‘

‘Yes.’

‘Oh, and what did they say?’

‘I said I’d called them, not that I’d spoken to them!’ I then explained, gently, ’cause she was a locum and therefore wouldn’t necessarily know any better, the realities of the helpline. (I didn’t mention Brexit or fish mongers.)

‘Hmm, you had a blood test only yesterday and your bloods were hardly elevated at all.’

‘They never are.’ The mere fact that my bloods are even a smidge elevated is a pretty strong indication of a flare with me. Sometimes I flare and there’es no indication whatsoever in the bloods. Now this is where a doctor relationship would come in handy. If she’d actually known me, known that I’ve had RA for nearly ten years, known that I’ve had umpteen flares in my left knee, known that blood tests are not a helpful indicator with me, known that I have a brain, we could have skipped the pointless bits, more of which are coming up.

‘Ah, well let’s have a look.’ Prod, poke.

‘Aaaaaaaaaaaaaaaaaaaaaaaaargh!’

‘Did that hurt when I pressed there?’

‘No, I just thought I’d make screamy gurgling noises for fun.’ (Nope, I didn’t really say that either, I just said yes.)

‘Can you bend it?’

‘This much.’ Demonstrated a very slight bend.

‘Ah. Have you tried pain killers… like paracetamol?’

I’m afraid I just looked at her and laughed, finally managing to choke out a ‘yes’, followed by ‘interspersed with ibuprofen.’ She looked amazed that I’d been able to think of painkillers all by myself.

‘Well I’ll prescribe a course of steroids. Now if they don’t work, we’ll have to consider other possibilities like osteoarthritis, as they should work for RA.’

‘Well, they’ve worked every other time I’ve had them, so touch wood that they will this time too.’

‘Oh … right.’ Look of mild astonishment, either that I’d had them before (it’s in the notes dear) or that I actually knew that I’d had them before, who knows.

So I thanked her very nicely, ’cause I’m a well brung-up penguin … and I might run into her again, and off I went to the chemist to get my steroids.

Again, after nearly ten years of RA, I think I recognise an RA flare when I see one … I really hope I’m not proved wrong and that the steroids do work again this time and it doesn’t turn out to be OA. That would be sooooo embarrassing after this post!

So angry my glasses are steaming up

February 22, 2016 at 12:23 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
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At the behest of the hospital rheumy nurse, I’ve just been down to the surgery to have a blood test, since as I’m hopefully now getting more methotrexate into my system with the injections, they need to make sure that I’m not overdosing.

I got to the surgery, I went over to where the board hangs up where you collect your number and wait to be called for a blood test – no board. I headed back to the reception queue – the MASSIVE reception queue, the slow reception queue – in fact it wasn’t slow, it was immobile.

It took me 20 minutes to get to the front of the queue to say, ‘Where are the blood tests?’ only to be met by a blank look and, ‘Isn’t there a board …’

‘No, that’s why I’ve been standing in this queue for the last twenty minutes.’

‘Oh … well one young lady went home sick so perhaps they’re not doing them.’

‘It would have been helpful to put a notice up to save me queuing, and probably halve your queue at the same time!’

‘Oh, isn’t there a notice up? I’ll talk to someone about that right now.’

‘Don’t bother – they finish at 11 anyway and it’s 11 now.’

At least I needed to go anyway to get a printout of my new repeat prescription with the Metoject pen and then put that in to be reviewed by a doctor.

I sympathise with the sick phlebotomist; I sympathise with the rushed off their feet reception staff; where I draw the line is attempting to sympathise with blatant incompetence. How much effort would it have been for one of the receptionists (perhaps while she was getting coffee, as one of them did while I was queuing) to write a quick note saying, ‘No blood tests today due to staff sickness. Please try tomorrow but ring first.’ Not long I suggest. It also wouldn’t take long to inform all the receptionists (all three of them) that there are no blood tests, and yet clearly that hadn’t been done either.

It’s a good job I wasn’t going for a blood pressure check as my blood is boiling – at least it’s keeping me warm on a cold day!

Knee flare

September 25, 2015 at 8:30 am | Posted in rheumatoid arthritis (RA) | 3 Comments
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Poor neglected blog! It’s been neglected till now because RA has been under control and I’ve not had much to say, and now it’s going to be brief post because I’m typing on the iPad mini, which ain’t easy when you’re  used to touch typing!

So so why not use the PC? Because I’m having a great big flare in my left knee and can’t comfortably get my leg under the desk! This also means I can’t work of course! Very frustrating! It started Monday night, I had Tuesday off work and went back Wednesday when it was quite a bit better. Probably a mistake as yesterday (Thursday) it was a whole heap worse.

i phoned the doc and spoke to, I think, a locum.

‘What can I do for you?’

‘I’m having an RA flare in my knee and it’s about the size of a football.’

‘Oh?’ <slightly sceptical voice>

<Pause>

‘I do have RA! Had it about eight years!’

<pause>

‘oh, right, yes, of course …’

Oh good, he’s finally read some notes!

‘Well’ says the doc, ‘What do you normally do for that?’

‘You give me a prednisolone taper.’

‘Ah, when did you last have one?’

The honest response would have been ‘Duh, I dunno!’ I’m just hopeless with dates! I know it was a while back so I said ‘Maybe a year ago?’ For all I know really it was 2 or 3!

‘i can’t find it on the system.’

‘good grief! I’ve hardly been in the surgery this year! There can’t be that many visits to look through!’

‘Oh, I’m not in that bit. I’m looking at medication and all your monthly repeats are coming up of course.’

I bit my tongue and didn’t say ‘Well go into that bit then.’ I didn’t want to antagonise a man who was (hopefully) going to give me drugs!

‘Hm, I can’t find it. Do you normally start the taper with 4 or 6 tablets?’

durr… I dunno! ‘Four? … Maybe? … I think … Not sure.’

At this point I expected something on the lines of ‘you’d better come in and I’ll look at it and make an informed medical decision’. Instead I got, ‘Well let’s try four. I’ll send the scrip over to the pharmacy for you.’

I have to say he was very pleasant and I’ve shortened the nice chat we had drastically due to iPad typing, but still unsure whether to be grateful to doc for listening to and believing (eventually) the patient, or horrified  at the laissez faire attitude! As it saved me a very uncomfortable trip to the surgery I think I’ll opt for gratitude! Now I’m just sitting with my leg up and hoping the steroids do the trick!

I’m missing an art exhibition I really wanted to see, a workshop on identifying dragonflies and possibly a painting class, over the coming weekend, but I’m catching up on lots of reading and doing some crochet, which I’ve not done for ages, so there are good things ….kinda!

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 arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 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. 

 

 

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.

Breathtaking incompetence … but I’m glad … no, really …

February 27, 2014 at 7:02 pm | Posted in rheumatoid arthritis (RA) | 6 Comments
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I’m Pollyanna right? I can do this glad-game thing! OK, I’m glad I’ve had to go to the surgery and the chemist three times this week because it’s given me an opportunity to enjoy more of the beautiful spring weather (in between the showers). I’m glad the doctor completely screwed up my last prescription in three different ways, because otherwise I wouldn’t have had that lovely experience I’m so glad about. I’m glad that I had to go in to the surgery reception tonight and point out that even after a conversation with the doctor yesterday, he had not sorted out the correct repeat date for my folic acid, because if I hadn’t, I wouldn’t have had that amusing conversation with the receptionist about kicking her cat.

Hmm … doesn’t sound too convincing, does it, really? Well I am at least trying – but it’s very trying, especially as I’m still at the tail end of a flare.

Here’s what happened – in brief – I hope, although I do have a tendency to waffle on, as you may have noticed.

I put in my repeat prescription as normal, picked it up Monday, got it home and realised that my folic acid was missing. As my folic acid was the only thing I’d run out of (I just ordered all the RA drugs at once to save another visit to the chemist) I was a bit peeved. I contacted the surgery reception and had a conversation something like this:

Polly:     I’ve collected by repeat scrip but it doesn’t include my folic acid.

Receptionist:     Ah … let me look it up. Oh I see, that’s because you’re not due any until March.

Polly:     Yes I am, I’ve run out.

Receptionist: Oh no, you can’t have. You see it was issued last month, and you take it three times, on Wednesday, Friday and Sunday.

Polly: Yes

Receptionist: So that’s three times a week

Polly:     Yes

Receptionist: And they issue you twelve, so …

Polly: Yeeeeeeees …

Receptionist: <lightbulb going on> Oh! That is actually a month’s worth, isn’t it?

Polly:     YES!!!!!!!!!!

Receptionst:      Oh … in that case it looks like the doctor’s made a mistake.

Well, to cut a long story short(ish) that wasn’t the only mistake he’d made, so although I was able to have my folic acid rushed through and pick it up in time for me to take it on Wednesday, I then realised there were two other things (non RA-related) also missing from my prescription! I checked the repeat prescription paperwork and it quite clearly said that those things were due now … and that the next batch of folic acid was due in … April.

Noooooooooooooooooooooo……..

So I phoned again and asked for a doctor to call me back to discuss this, which he duly did! I had a very pleasant conversation with him, while being driven to my mum’s house by a colleague in order to turn off mum’s faulty burglar alarm … but that’s a whole nuther story … and, after an entire repeat of the conversation with the receptionist – ‘You take it three times a week … we issue twelve … OH!’ etc. he assured me he’d change it on the system and also put through a prescription for the other two things.

Tonight I went to pick them up, feeling happy, relaxed and full of the joys of spring. I went into the chemist and sure enough they did have my other two items ready. Hurrah. Then, foolishly perhaps, I checked the paperwork. Instead of saying ‘Folic Acid – due 26 March 2014’ in nice, neat print, it said ‘Folic Acid’ and then 26 March 2014 scribbled in in biro over the printed ’26 April 2014’! All very well except that a) I could do that myself, and indeed when I next put in a repeat request the doctor (probably not the same one) would assume I HAD done it myself and just not issue me any, just like the last two months and b) what happens when I want some more in May or June or whenever and the issue date is for two months down the line again?

So I went in and, having honestly been really nice and polite to the receptionist the first time (and not mentioning breathtaking incompetence at all), and really nice and polite to the doctor (in spite of mum’s alarm going off in our ears in the middle of the conversation), this time I blew my top, flipped my lid and generally had a big squawk! The receptionist was lovely – didn’t apologise exactly, they never do I’ve noticed, and neither do the docs, probably terrified if they say sorry I’ll sue them for something, but was very helpful. She put in a note for the doctor saying it did need to be changed, please, and suggested I call tomorrow to find out if it’s actually been done. (She obviously has as much faith in the system as I do!) When I said that I was sick to death of going in there and had had to come in three times in the last three days she said, ‘You should try working here. I love my cat, but honest to God I go home each night and want to kick it!’ Don’t tell Enormous Cat, but this evening I knew how she felt!

Hairspray?!

January 20, 2014 at 11:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 5 Comments
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Something odd’s been happening lately. Several times I have suddenly smelt (and even tasted) hairspray – and once or twice it’s been a taste sitting at the back of my mouth/throat for hours and hours. The first time it happened I assume my colleagues (aka the junior penguins) had been drastically overusing the stuff,  although neither of them looked lacquered (!) but the following day I woke up with the same thing, so I figured I couldn’t blame them after all.

Then it went and I thought no more about it for a few days … and then it came back! At its worst it’s really very unpleasant indeed – it makes everything taste slightly odd, even put me off my coffee for a short time, which is unheard of!

And then it went again.

I can only think of two serious possibilities for what might cause this, given that I don’t own any hairspray and it’s definitely not the JPs’ fault! One is a bit gross, so GROSSNESS alert, skip the next paragraph if you don’t want to be ‘grossed out’.

OK, here goes – I’m just getting over a nasty bout of sinusitis – and part of that is (or can be) having blood and puss form in the sinuses which then has to … erm … find a way out! The way out is either via the nose or down the back of the throat … and in my case (gross bit) it was doing both! Now blood has a sort of metallic taste that could, I feel, be confused (especially in my naturally confused state!) with the metallic smell/taste of hairspray. Of course you may have never tasted hairspray – lucky you! I’ve managed to ingest a bit now and then over the years when using it!

OK, that’s the gross bit out of the way. The other, very faint I think, possibility is the methotrexate. The posh name for an unexplained metallic, foul or unpleasant taste in the mouth is Dysgeusia and it has been reported, very rarely, as a side-effect of the methotrexate. However, the little I can find about it SEEMED to suggest that it doesn’t go away, and the only thing that makes it go is stopping the cause – i.e. stop taking the MTX. Well, it’s not THAT bad! I think the MTX has done me a LOT of good, so a bit of a bad taste in the mouth I can live with. Then again … it may be nothing to do with it anyway.

Needless to say, I won’t be popular with our stressed NHS doctors if I make an appointment and say ‘I’ve got this funny taste in my mouth…’ so I haven’t bothered. What I will do is see how thing are tomorrow morning, given that I take my methotrexate tonight. I THINK it’s been worst on Tuesdays the last couple of weeks, but am I just imaging that? I’ll find out tomorrow!

The joys of the walk-in blood test clinic

November 22, 2013 at 6:00 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 4 Comments
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Last time I had my monthly (now three-monthly) rheumy nurse appointment at the surgery, they happened to be running the first walk-in blood test clinic. These will run every Thursday – no appointment necessary, just turn up any time on Thursday, take a ticket, sit down, wait to be called and have your blood taken. No actual nurse appointment – in and out, ram in the needle, suck the blood, off you go. Well … that’s the theory.

My rheumy nurse had blithely assured me that they had run trials on this and each person could be seen and sent on their merry way in 1.5 minutes. I’m sure you won’t be surprised to hear that this wasn’t quite the way things were going on the day I happened to be there. As I say, I wasn’t there for one of these walk-in tests – I just had the dubious pleasure of observing while waiting for my appointment. I am supposed to go along in a couple of weeks time for one.

Well I arrived around 8:30 for my appointment and saw a big board on the wall with raffle-ticket type numbers on it. They had obviously run from 1 to 50 but 40 of the tickets were already gone and the waiting room was alarmingly full. As I sat down a weary looking phlebotomist poked her head round the door and yelled ‘Seven … seven? Is number seven here?’ Number seven was not there – I think number seven had got fed up with waiting and gone home!

‘Eight … number eight?’ A grumpy woman got up and pointed out she’d been there since 7:30 that morning and had now waited an hour for one of these quick appointments.

When I went in for my appointment (dead on time, bless her!) my dear nurse looked a tad frazzled. ‘What IS going on out there?’ I asked, and she explained that this was the first run of this new system, they were two nurses down  and the practice manager was on holiday! She was trying to fit in the odd ‘walk in’ patient on top of her full rheumy list, to help out.

Well – that couldn’t be helped, could it? I mean if people call in sick, you’re stuck, aren’t you? No one to blame. And of course the NHS can’t afford to employ locum/bank nurses to fill in – just one of those things, I thought.

Then I thought again. I know this place, I thought … ‘Erm … dear rheumy nurse,’ says I, ‘how long have these ladies been off sick?’

‘Oh, don’t!’ says the dear nurse, ‘Joan’s been off so long I can’t even remember and Julie’s recovering from an operation so she’ll be off a while.’

Right … so whose bright idea was it to start off this system KNOWING they were two staff down and couldn’t possibly cope? I don’t know but I can guess … someone who was on holiday, perhaps?

By the way, when I came out from my 15 minute appointment there was a nurse shouting ‘Ten … number 10 …’

So ‘we can turn these people round in 1.5 minutes’ had apparently turned into ‘We can turn these people around in … um … probably about 15 minutes’ given that there were two nurses doing this walk-in full-time and others stepping in when they could.

Number 43 was off the board by then – I wonder how long until they ran out of tickets – I overheard a receptionist saying, ‘Oh, I think they’ve all gone – you’ll have to come back next week’ to someone, before realising there were some tickets left, so presumably there are only 50 slots and ‘Turn up any time on Thursday will actually mean ‘Turn up before 9 on Thursday or you’ll be out of luck.’

Of course the new Clinical Commissioning system that is now in place but not in place and has no one actually running it is no doubt partly to blame … but that’s a whole nuther story …

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