Occupational Therapist – jolly useful!

September 15, 2008 at 7:53 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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I consider myself very lucky that my rheumatology department runs this early arthritis clinic, even if it is a little tricky to get into it (as you’ll know if you’ve read the two previous posts). I don’t think someone with symptoms as mild as mine would normally have access to an OT. Silly little things have become very frustrating over the last few weeks – opening jars, turning on the kitchen tap, which gets quite stiff, and, on bad days, gripping anything that’s smaller than an inch or so in diameter. I wouldn’t have thought to bother a doctor about any of these things but it was great to talk to someone who not only really understood the frustration, but actually had some practical advice to offer. She’s suggested simple pipe lagging, which comes in a rang of diameters, can be slid over things like toothbrushes, hair brushes etc. to make the grip softer and wider, and she’s given me a bit to take away and try. She’s also given me a bit of magic plastic grippy non-slippy semi-sticky stuff. It’s officially known as a piece cut from a Dycem non-slip reel but I just call it magic! It does the gripping for me so I just drape it over the very stiff tap and I can turn it on just using the palm of my hand! I expect one can open jars and things with it too, but they do also make a jar opener so I might look into that. I’ve got a cane with a moulded hand grip for really bad days … although if my knee’s bad then my hands will probably be too bad to use it … at least I have the option though. And finally I’ve got her phone number … which if she actually answers and is happy to give advice over the phone, could be worth its weight in gold.

I really shouldn’t say this, because she was so lovely, but we obviously didn’t share a sense of humour. ‘What do you use to open jars?’ she asked, before providing me with the little slice of blue magic mentioned above. ‘My husband,’ I answered, with a grin, or something as close to a grin as I could manage given my mood. Now everyone else I’ve said this too has laughed, or at worst chuckled, but she took me deadly seriously … and in fairness I was serious, I suppose. I do use hubby to open jars, but that’s never worried me unduly. ‘Hmm,’ she said, ‘now we must maintain our independence, mustn’t we?’ One of my pet hates is being referred to as ‘we’ but I let it go, because really, she was so lovely and helpful.

Early Arthritis Clinic – I get there at last! Hurrah.

September 15, 2008 at 5:38 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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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!

Glad I’ve still got the energy to kick up a bit of a fuss!

September 14, 2008 at 8:49 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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I saw my consultant for the first NHS appointment in April – having made the diagnosis he suggested I see the nurse practitioner for more information, and she referred me for an ‘early arthritis clinic’ which is a combination physiotherapy and occupational therapy clinic, the idea being that you get seen by both camps and they give you suggestions for every day living, assess your physio needs etc. Note the name ‘early arthritis’. I contacted the nurse in June to say I’d still not got an appointment – she checked up and told me they had a four-month waiting list. Hmm, I thought, so much for an early arthritis clinic! I rang her again after about 4.5 months – she told me she’d chase it up. Then I went to the Norfolk Arthritis Register meeting (which I’ll post about later) and the occupational therapy people were represented. I took my courage in both hands, went up to the OT stand and said, ‘I know this isn’t what you’re here for tonight, I’m sure you’ve been dreading someone doing this but I’VE BEEN WAITING FOR AN APPOINTMENT FOR FIVE MONTHS!’

She was very puzzled. ‘We only have a one-month waiting list’ she said. Well … that was interesting. Not that I’m pointing any fingers of course … but it does make you wonder …

She took my details and I thought that was the last I’d hear from that line of enquiry, but in the next day I go two phone calls from the hospital! The first was the rheumy nurse, apologising ‘on behalf of the whole hospital including myself’ for the complete mess they’d made of this appointment and saying that even though I’d been on the system when she checked in June, I was apparently nowhere to be seen on the system now. She said she’d re-referred me with a note saying this had been going on a while and was urgent etc.

That afternoon I got a call from the OT I’d spoken to the night before, asking me to come in later on in the same week! Amazing what a bit of kicking up a fuss can do. I shudder to think how long I’d still be waiting otherwise!

In fact when I saw my consultant he effectively gave me carte blanche to kick up a fuss if I needed to see him before the next appointment! The conversation went something like this:

Doc: Do come and see me before your next appointment if you need to.

PP: Fat chance! I tried that, but there were no appointments.

Doc: Well … reception can be a bit … you just need to phone my secretary.

PP: I did that … twice. She said there were no appointments.

Doc: Oh well! There are never any appointments!

PP: Then there’s never any point in saying I can see you before my next appointment!

Doc: Oh, you just need to kick up a bit of a fuss. We have to rely on the patient to kick up a bit of a fuss I’m afraid.

Well I’ll certainly kick up a fuss if the receptionist behaves on Monday when I go for my nurse’s appointment the way she did when I went for my OT/physio appointment … but that’s another story.

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