Tags: rheumatoid, rhematoid arthritis, rheumatology, Rheumatoid arthritis, arthritis, nurse, joint pain, GP, knee, rheumatoid arthritis (RA), NHS, hospital, nurse practitioner, physio, aches, R.A., stiffness, physical therapy
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.
Tags: aches, arthritis, consultant, doctor, fibromyalgia, flare, flare-up, hands and feet, hospital, joint pain, knee, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
I’ve got grumbley hands and feet. I’m not sure that I’d use this description to the rheumatologist mind you, but it seems to fit. I’m not in agony; in fact,I’m not even in constant pain, but if I overdo it then the hands and feet … and knee of course, how could I forget the knee … grumble!
I’ve been getting a lot more grumbling going on over the last few weeks than I’ve had for ages. I think it all started with the flare that I had between Christmas and New Year, and there have been niggles ever since.
It doesn’t seem to matter what I’m doing – and in fact my hands have been better today, back at work and typing, than they were over the four-day weekend I’ve just had. (Fabulous birthday weekend away, but that’s a whole ‘nother story!)
At least I’m not grumbling much about work right now – we’ve had two weeks of it being dead quiet, and now it’s gone manically busy! It would be lovely it was a constant steady flow, but I’m much happier with it busy and buzzing than dead as a dodo.
Well, I don’t have a rheumatology appointment until May, and things are nowhere near bad enough to make me subject myself to one earlier, so I suppose by then the grumbles will either have done what they usually do miraculously in time for a rheumy appointment, disappeared – or they’ll be bad enough that I’ll be able to have a proper grumble to the doc about them! In the meantime I shall just grin and bear it … or possibly grumble and bear it.
Tags: arthritis, exercise, hospital, NHS, nurse practitioner, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
Physio: Good morning! So, we’ve been doing acupuncture on your shoulder, yes?
Penguin: <Feathers on end, eyebrows raised> NO!
Physio: Oh … you seem very definite about that.
Penguin: Yes … I am.
Physio: Erm … what have we been doing then?
Penguin: Some exercises and some frictioning [a kind of massage on the tendon]
Physio: Oh yes, and how was that going?
Penguin: Well the frictioning last week really seemed to help.
Physio: Great. Let’s do some more of that then. Now, the exercises, it was this one, with your arm bent, raising up and out, yes?
Penguin: No …
And so went most of the session. Having said all that, she did do the frictioning and it did help, and once we’d established what exercises I was doing, all went relatively smoothly.
THEN she turned on her computer (with my notes on it of course).
What had happened was that I had the first appointment of the day and she’d obviously been running late and thought, ‘Never mind, I’ll wing it.’ So, a word of advice to health practitioners everywhere – don’t! I’m sure it took her longer to find out what she was supposed to be doing than it would have taken to turn on the computer before we started!
Tags: arthritis, consultant, diagnosis, doctor, hospital, NHS, nurse, nurse practitioner, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Something’s going on. Call me a nasty, suspicious, cynical penguin, but this just isn’t normal. I went for my routine rheumatology check – you know, the one where they say, ‘Oh go away – we’re not interested in you. Call those symptoms? Ha! I see people in a much worse state than you every day!’ (As though that has anything to do with the price of fish.) But this time it was different … It started off with the usual intro as though we’d never met before, but this time, as I looked at her blankly, she actually said, ‘Oh – we’ve met before, haven’t we?’ Then she looked at the notes – yes, the ones she’d taken in with her five minutes before she called me in, but obviously hadn’t read, and went, ‘Oh yes, I saw you last time.’
OK, not an auspicious start, but nevertheless, better than expected. But here’s where it gets weird. She asked how I was. I said fine. She said ‘scale of 1 to 10’ and I said ‘1’. She looked blank. ‘Well, is there anything you want to ask me?’
‘No, not really.’
‘Well … is there anything I can do for you?’
‘You can say, “You’re fine. Go away and come back next year,” and then I’ll do that.’
‘Yes, but … I mean surely … ‘
What’s going on here – you usually can’t wait to see the back of me.
‘I know – you haven’t had any x-rays for ages. We ought to check there’s nothing going on below the surface that we’re unaware of.’
Really – I was diagnosed in 2007. In 2009 I mentioned x-rays and how the guidance said they should be done a year afterwards and then every so many years – but it was poo-pooed. ‘No, you’re fine. We see worse people …’ etc.
I haven’t had any x-rays done since and it hasn’t worried anyone.
‘Good heavens, do you know, you haven’t had any x-rays done since you were diagnosed!’
‘Yes, I know.’
‘Well I really think you should have them done. I know it’s inconvenient coming in specially and I know they’re a bit of a pain, but I really think …’
‘Fine. I’m happy to come in.’
And then, to make matters even more Alice-down- a-rabbit-hole, she said they could arrange the x-rays to fit in with another appointment I had, to save on trips in. Hang on – when has the hospital ever put itself out to help its out-patients? This is new – but I’m not complaining.
Of course, in the next couple of days the universe got itself back on track. The appointment for x-rays arrived, on a completely different day to my other appointment and at an impossible time two days from when the letter arrived.
Ah – that’s more like the NHS I know and love, I thought. But wait … I emailed them (yes, they’re now so far into the modern age you can email them, woohoo) and said, ‘Sorry, can’t make that, but I will be in the hospital on this date for this appointment. Can you fit round it?’ And wha’-do-ya-know – they actually did!
So … did it work? Did they fit in? Did I run late for the next appointment? For answers to all these questions and more, you’ll have to wait for the next exciting episode of … Polly’s Adventures in NHS Wonderland.
Tags: anti-TNF, arthritis, flare, hospital appointment, NICE, nurse practitioner, physical therapy, physio, physiotherapy, R.A., RA, RA flare, Rheumatoid arthritis
I was on my way to my six-monthly (ish) hospital appointment this morning, and feeling distinctly glum, most definitely not wanting to go, when the news came on the radio and cheered me up slightly. Some excellent news for UK RA patients generally, I’m delighted to say: NICE has reversed its ludicrous policy of refusing to treat patients who failed on one anti-TNF with another. Anti-TNFs are not all the same, so saying that because a patient fails on one they won’t benefit from a different one is patently absurd, but that’s exactly what NICE, the patently absurd National Institute for ‘Clinical Excellence’ had decided to do. From later this year though, patients who fail on one anti-TNF will be allowed another go. (I think only one more go, but that’s better than none!)
Hopefully I shall never need to worry about this from a personal point of view as I seem to be doing well on the methotrexate. Inevitably the three-week flare I’ve just come through has now passed (just in time for the hospital appointment, of course) and didn’t show up in the bloods, so it’s not being taken at all seriously. Still, on the bright side it DOES seem to be over, so next time I shall just have to gird my loins and nag the hospital while I’m HAVING a flare, if only so they get to see it!
So that was the mildly irritating.
The bad is physio – not my physio of course; she’s still lovely. But apparently, ‘In order to be in line with private practice’ they are going to restrict all patients to a maximum of six appointments before a re-referral is required. It’s a very confusing system which I’ll explain in another post, but I can probably get re-referred. However, if I normally have physio twice monthly, I’ll have to get rereferred every three months and then wait around five weeks for an appointment, where presumably I won’t be guaranteed to see my lovely physio and will be reassessed each time, even though after a couple of years I think between the two of us we have a pretty good idea of what works! (Anyway, more about this whinge later!) The bright side is that I have at least had her for around two years, and when I started seeing her I thought then that they’d kick me out after six appointments, so I suppose I can’t complain. (Oh wait – yes I can …)
Tags: anti-TNF, appointment, arthritis, consultant, flare, GP, hospital, medicine, methotrexate, MTX, NHS, NRAS, nurse, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
It’s official – I had a flare at the end of October/early November … and more, I suspect. No kidding. I think I knew that, but this time it actually showed in the bloods! That’s a first for me!! I’ll give the consultant his due though – he was as amazed as I was that the bloods actually matched with how I’d felt, so he does at least appreciate that one can feel totally lousy and have no indication in the blood tests whatsoever, and vice versa.
Anyway, we agreed that things were going pretty well at the moment and that it didn’t seem sensible to go on increasing the MTX willy-nilly if things were OK. I explained that I knew I was much, much better than last time I’d seen him (which I think was well over a year ago, as I’ve since seen a registrar and a nurse but not the man himself), but that they certainly weren’t perfect, and for the first time he admitted that I probably wasn’t going to achieve perfect … I’d kinda figured that out, but still a slight blow to hear him say it!
He then cheerily added that never mind, compared to what he usually saw I really wasn’t bad at all. He has no idea just how bloody irritating this comment is – he’s said it before. I think last time I was too dazed and generally fed up to actually respond, but this time I was properly prepared and I pointed out that I wasn’t comparing myself with his other patients – I was comparing myself to myself before this whole R.A. business started, and that when I do that I don’t see my current self in a terribly favourable light. The nurse who sits in with him (as a chaperon and to make sure he remembers to fill all his forms in!) was nodding sympathetically and understandingly behind his back. I got the feeling she’d heard this comment from him before and had thought exactly what I was now saying. Anyway, he sort of blinked a bit, looked rather surprised at being answered back to and mumbled something that was vaguely conciliatory … I think.
Then he bid me to enter his dream world by saying, “If the MTX doesn’t keep things under control, if you have another flare, we’ll put you on these terribly expensive new drugs called biologics or anti-TNFs.” (He does tend to forget I have a brain.)
I snorted – very rude, but it just sort of happened! I said something like, “Have to be one hell of a flare for the NHS to let me on to those!”
“Oh no,” says he, “just an ordinary sort of flare.”
Well, that’s certainly not the impression I’ve been given by the NRAS magazine, the people on the NRAS forum (other R.A. sufferers, generally in a much worse state than me, who have failed the ‘DAS test’ for anti-TNFs), the press, people I met in Barcelona, the nurse practitioner, the GP, the practice nurse … just about everyone else really. Since this is the man that told me I should see him in three months last time, when it was totally impossible for anyone to get an appointment closer than six months, and the man who told me that all I needed to do if I had a flare was phone and I’d get straight through to someone on the helpline (not true as it’s usually unmanned and then they don’t call you back) I don’t feel too filled with faith about the biologics comment either! I dare say though that his “ordinary sort of flare” would be the ordinary sort of flare that his other patients have, not my little fizzle!
Well, hopefully the MTX will now do its job properly and I won’t need to ever find out whether he’s living in a dream world or I’m just being unnecessarily pessimistic about my prospects for biologics!
Tags: arthritis, doctor, exercise, flare, flare-up, hospital, neck pain, NHS, nurse practitioner, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Wren posted a comment asking about physio and I thought it might get a bit long-winded for a comment answer, so I’m making a post out of it!
This was Wren’s comment – sorry Wren, just realised that this answer is going to come a bit too late for your appointment! “On another subject: How often do you see your physio (physical therapist)? What do you do at the appointments? Are there special exercises? I’m curious because I keep reading of others having PTs they go to frequently, but this is something that I’ve never done, or even had suggested by my doc. I’m seeing him on Saturday morning, and I plan to ask about it, but in the meantime, how does this work for you?”
I personally see my physio every two weeks at the moment, but that’s a timing that we decided between us and it’s changed over the months I’ve been seeing her. I started seeing her weekly when things were really bad and we’ve moved on to two weekly. We tried three-weekly but that didn’t work out – by the time I saw her after three weeks my shoulders were in agony!
There are indeed special exercises, but again they’re entirely individual to each patient. I think it’s fair to say that generally you don’t do any exercises during a flare, reduced exercises during a “fizzle” (if you have fizzles, as I do!) and you try really hard to do them when things are fine, but frequently forget! Luckily I have a very understanding physio (this is afterall the woman who recommended a year’s supply of cake, but she says I’m not allowed to post that story!!) and she appreciates that it’s hard to remember to do the exercises when things are good!
What we do at the appointments is 1) Talk through how I’ve been over the last couple of weeks since I’ve seen her 2) Decide what needs doing this time 3) Do it. Usually, what needs doing is either ultrasound on my knee(s) or ultrasound on my neck and shoulder(s) or both. Again, I’m lucky to have such a flexible and understanding physio. By the time I got to see her, I’d been seeing another physio privately for months. Long story – see here and we’d established that ultrasound works for me. Again, it’s a very personal thing. Some people find acupuncture fantastic, especially, apparently, for knees – I don’t. Some people find ultrasound completely useless – I don’t.
If there’s a different joint giving me problems we’ll talk through that and discuss if there are any exercises that might help, or whether ultrasound, TENS etc. might help.
I have a whole selection of exercises that I should do regularly for my neck, shoulders and knee, and a bunch of others to ease morning stiffness in other parts of me. The knee, neck and shoulder exercises are more to strengthen the muscles in those parts, so that they can do a better job of supporting the joints, rather than to actually do anything to the joints themselves.
The attitude of the nurse practitioners is ‘use it or lose it’, so the consensus seems to be that the more you exercise (within limits), the better. Not being the world’s most active person the only time I’m likely to overdo those limits is when I’m having a flare (where minimal exercise is fine) or if I’m doing crochet, embroidery etc. and don’t want to stop although my hands hurt!
I hope this helps explain the whole physiotherapy/physical therapy thing a bit, but it is, I stress again, only my own very personal viewpoint, and I know that every physio is different (because I’ve seen at least five over the years) and every patient is different. I reckon if you find a physio that suits you it can only help, so why not give it a try?
Tags: arthritis, consultant, doctor, doctor's receptionst, GP, hospital, methotrexate, NHS, NICE, nurse, nurse practitioner, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
So, as I said in my last post, I got home from a cracking weekend away to find a letter telling me that due to my health professional being on annual leave, my hospital appointment for September 2009 was being postponed … for six months. Now it won’t surprise those of you who know me that I slightly lost my rag … it’s probably sitting somewhere with my marbles.
On Monday I phoned the hospital – the receptionist was suitably puzzled, perhaps even astonished, at the amount of delay, buy all she could do was put me through to the nurse practitioners’ secretary, and all she could do was add me to the cancellation list for September. ‘If you get to the top of the list, we’ll let you know and give you an appointment.’ She didn’t sound like she thought there was much chance of that.
So I asked her who I should make an official complaint to. She told me to contact the Patient Liaison Service and she put me through. This actually was NOT how you make an official complaint, but it was nevertheless a wise decision on her part as when I eventually spoke to the PaLS lady she was excellent – and sympathetic, unlike the secretary who had probably worked as a doctor’s receptionist before getting this job, and so I ended up NOT putting in a complaint…
But before I spoke to the excellent PaLS lady, I had to do the usual leaving of a message on the answerphone, waiting for a response, not getting a response, writing a stinking complaint letter and sending it off.
In my stinking letter I explained that not only was I having this appointment canceled, but in fact when I looked back at my diary it seemed that I had actually only seen the n.p., in April 2008. This is someone I am supposed to see every six months, interspersed with six-monthly consultant appointments so that I see a ‘rheumatology health professional’ every three months.
So … if I didn’t get to see her until March 2010, that would be a gap of just under two years in what is supposed to be a six-monthly appointment schedule!
I also pointed out that NICE guidelines state that a patient whose RA is not under control should be seen monthly. I didn’t hold out much hope for that argument, and I was right – ‘Well they are only guidelines, and we have to do what we can, but …’ but hey, when NICE are on your side you’ve got make the most of it! It doesn’t happen often!
Aaaaaanyway … the rather lovely PaLS lady (who turned out to be an RA patient herself) sent my letter to the RA manager, the nurse practitioner etc. and got a response back for me within 48 hours, and phoned me for a chat. She agreed with me that saying ‘your health professional is on annual leave’ when in fact what had happened was that yes, she was on annual leave but they’d also had one nurse leave suddenly and another drastically reduce her hours (and that from a group that was only four-strong in the first place), did nothing to endear them to their patients.
She explained that if I had a serious problem I could contact the helpline. I explained (again – it was in my letter) that actually things were pretty good at the moment, BUT the registrar I saw in June said that I should see someone in three months (i.e. September) to see if I needed to up my methotrexate if it was working. Now I wouldn’t see anyone until December (my consultant appointment) and I didn’t think that was good enough. Then she said that she thought the nurse p. could probably actually sort that out over the phone and up the MTX after talking to me if she thought that was the right thing to do.
Now that would suit me just fine – getting it all sorted over the phone without having to drag myself into Norwich and waste an afternoon … so I said that was really useful to know and that I would therefore not be making an official complaint at this stage … and then we had a nice, friendly chat about RA and the local support group etc.
So it all ended very amicably and pleasantly and I went off a much happier penguin … and prepared to give ‘em hell at the beginning of September when they told me that actually they couldn’t do it over the phone. Cynical? Moi?
But wait … is that the mobile I hear ringing … Yes … it’s the nurse practitioner’s secretary …
See the next thrilling installment for what happened next …
Tags: arthritis, DMARD, doctor, GP, hospital, New NICE guidelines, NICE, NRAS, nurse, nurse practitioner, occupational therapist, physiotherapy, RA, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Well it seems that NICE (the ironically named and aforementioned National Institute for Clinical Excellence in the UK) have done an about face on their original ‘if you try one anti-TNF and it doesn’t work, tough. You can’t have another one, ner ner ne ner ner’. They’ve released new guidelines which are actually very positive. Of course it doesn’t mean that all rheumatology departments will agree with or follow their guidelines but I suppose it’s a start. Here are some of the positives (IMO), and it’s only a very select few that resonated with me:
- Newly diagnosed people should be offered a combination DMARD therapy straight away, including methotrexate, ideally within three months of persistent symptoms. Well I don’t think I know ANYONE in the UK that was diagnosed within three months of persistent symptoms, let alone given the combination therapy option, but I’m glad if that’s going to change.
- A level of what is acceptable disease control should be agreed with the patient in advance and worked towards. HA! I’ll believe that when I see it. The nearest we come to discussing acceptable levels is ‘Really you’re not too bad. I see much worse people in here every day.’ Well yeah, and there are people much worse off than me in Africa, and indeed round the corner, but that doesn’t mean I have to be content with my lot!
- Quoting direct from the NRAS site (www.rheumatoid.org.uk) “People with RA should have access to a multidisciplinary team (MDT); this should provide the opportunity for periodic assessments of the effect of the disease on their lives ( such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, mood, impact on sexual relationships) and access to a named member of the MDT (for example, the specialist nurse) who is responsible for coordinating their care.” Well yeah, I have access to a multidisciplinary team. Like any team, some are fabulous (physio that I see now, occupational therapist, even if we don’t share a sense of humour, rheumatology nurse at the GP surgery), and some aren’t. One that isn’t is the one who would no doubt be ‘coordinating my care’, gawd help me, if that happened; the RA Nurse Practitioner at the hospital. I can imagine quite vividly what her assessment would be like. She would read off a form in a board voice, ‘Are you depressed? No? Good. Do you have sex? No? Good.’ And of course what’s required is that thing they don’t have time for at hospital, a CONVERSATION!
And don’t get me started on the patient guidelines – well, if you know me you know I will no doubt get started on the patient guidelines when I have time and feel up to it, but just for now I’ll say they’re absolutely appalling, patronising, insulting …you get the idea. I asked Arthritis Care for a copy. They were wonderfully efficient and friendly and sent me a copy return post, but having received them I took one look and went straight to the NICE website to find the health care professionals’ version – THAT actually told me things. I am sorry I caused paper and Arthritis Care money to be wasted. The patient guide had lots of nice white space and simple bullet points that told me that as a patient I should definitely have the right to treatment, possibly with drugs. (OK, I exaggerate, but thin doesn’t even begin to describe the level of information!)
I’m probably being a bit harsh, but it surely can’t be that hard to have something really, really simple with links or (see page whatever) if you want further detail, instead of assuming all patients are clueless. It’s as bad as the hospital rheumy nurse giving me the very useful methotrexate book and saying, ‘but really there’s more information here than you need’. I think I should be allowed to decide that.
Tags: arthritis, arthritis clinic, clinic, consultant, doctor, doctor's receptionst, early arthritis, hospital, medical, nurse practitioner, occupational therapist, OT, RA, Rheumatoid arthritis
It seems to me, and this is sad if it’s true, especially as I have an academic background myself, that the lower you go down the medical food chain, the more human the practitioners become. So, at the top you have the consultants who are so far removed from reality that they only see you as a point on a chart of severe to mild cases; then there’s the nurse practitioner, brisk and efficient, not going to put up with her time being wasted, slightly patronising, but well-meaning and quite friendly on a good day. And somewhere ‘below’ her … although some people reading this might ‘flame’ me for suggesting they’re not on a par (or perhaps even that they should be higher), are the occupational therapists and physios. So far I have experienced two physios and one occupational therapist and they’ve all been lovely – human, helpful and really caring.
I’m afraid the occupational therapist (OT) might have been a bit too human and caring under the circumstances, which is why I ended up rather snuffly with her, if not quite bursting into tears! I was having a BAD day – I don’t know why, but another law of arthritis (or mine anyway) seems to be that you NEVER see the consultant or nurse practitioner on a bad day. However, the day I attended the early arthritis clinic, last week, was a very bad day, thank goodness. If you don’t have RA yourself, or perhaps even if you do have it and don’t have to work within the confines of the NHS, you might not understand the ‘thank goodness’ comment. Well it seems to me that unless the consultant or nurse practitioner actually sees you unable to walk, or with beetroot red joints the size of turnips, they don’t really believe it happens, although they’re all too polite to say so. As my RA seems to come and go and be peripatetic as far as which joints are affected, this is thoroughly frustrating!
Anyway, I turned up at the clinic, after the whole appointment debacle I’ve already mentioned in the post below, and the receptionist couldn’t find me on the system. She was polite, friendly and baffled. Eventually she called over another receptionist, who was also baffled – although lacking the polite friendliness of the first. I was getting just a tad fed up at this point because I hurt, I’d been standing for a while (not comfortable) and I was really worried that after the five month wait they were suddenly going to decide they couldn’t find me on the system … again … and I didn’t have an appointment. She looked at me over her glasses and said, very patronisingly, ‘And what appointment did you think you had today?’ And believe me the italics were hers, not mine – there was a very scornful stress on the word ‘think’.
Eyes flashing, lips a thin line, I growled, ‘I know I have an appointment with the early arthritis clinic.’ She continued to look blank. ‘A combination of occupational therapy and physiotherapy,’ I explained.
She gave a deep frustrated sigh and said, very rudely and abruptly, ‘Oh well then, you’re in the wrong place.’
‘Interesting,’ I said. ‘They told me to report to rheumatology reception.’
She went back to baffled. At that moment a third receptionist, who had been sitting quietly in the background dealing with other things, (or possibly just eavesdropping and having a laugh), said ‘No, the early arthritis clinic – it’s this list here you should be working from, and look, the lady’s name is on it.’
‘Call that a list,’ she said, with scorn. Now I have to agree with her here – it was a slightly smaller than A5 bit of paper with a tear down one side, looking like scrap, with a few names scrawled in biro down it. But still … it was her job to know it was there or someone else’s job to have told her. Rather than apologising nicely she managed to grate out, ‘Well … we apologise. Take a seat.’
I was fuming and unfortunately when I fume, rather than yelling and shouting, or even being calm and productive, I just want to burst in to tears … so when the OT was so nice that’s nearly what I did! Anyway, she was very helpful and made some useful suggestions, which I’ll post about separately. Then I saw the physio, who gave me some basic ‘range of motion exercises’ for all the joints and has referred me on for more physio. No idea when that will materialise, so I’ll keep forking out £35 a week for the private one for the moment! I hope the NHS one kicks in soon though!