Reframing a rubbish day in positive R.A. terms

October 5, 2009 at 9:32 pm | Posted in rheumatoid arthritis (RA) | 7 Comments
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I have had a bad day … but a good R.A. day!

Here’s how the day’s gone:

1. I had completely forgotten I had a blood test this morning, went sailing off to work, got there, realised that I should be going to the GP, turned around, and the red petrol light came on. Mad dash to fill up with petrol from my spare can before the appointment, because I KNEW that otherwise I’d forget.

Positive R.A. stuff:

  • All results from the previous test were fine – in spite of a recent increase in MTX.
  • The nurse only had to have one go at getting my blood instead of the usual Penguin is a pincushion routine.
  • I got the top of the petrol can and it didn’t hurt!

2. For some reason the red light wouldn’t go out, so I decided to go and buy some petrol. Just as I’d driven PAST work on my way to the petrol station, the petrol needle readjusted and the light went off!! Aargh. Decided to get some petrol anyway and fill up the can. Filled up the can, put some more in the car, went in and joined the queue. There was a man in front of me but I didn’t take much notice of him, as you don’t. When I got to the front the conversation went something like this:

Penguin: Pump 2 please

Assistant: Wha’?

Penguin: Number 2 … please.

Assistant: Huh?

Penguin: Pump … number … 2 … please?

Assistant: Ohmegawd, ohmegawd, ohshite, ohmegawd, stop Mr Pratt … Mr Pratt, Mr Pratt!* oh no he’s gone. Lydia, Lydia, shite, heeeeeelp.

As you may or may not have guessed, the aforementioned Mr Pratt had told her that he was on pump 2 and she hadn’t checked. It was obviously not deliberate as he had an account with them so it can be changed on that, but it caused havoc as far as me paying went, and added about ten minutes to my already delayed start at work.

Positive R.A. stuff:

  • I worked the petrol pump and it didn’t hurt at all! (This is not usual at all for me.)
  • Standing about patiently (and then mildly irritably, and then impatiently) while the assistant sorted herself out didn’t hurt either. My feet were fine.

3. I get to work, tell ‘the boss’ what kind of morning I’ve had and firmly announce that from now on the day is GOING TO GET BETTER! I am determined that this will be so. I am thinking positively. NOTHING ELSE is going to go wrong.

Then, at about 10:33 I realise I’m supposed to be in the cafe down the road meeting a friend for coffee …at 10:30. Aaaaaaaaaaaargh. I tell the lass that works for me (a.k.a. the boss) that if my friend phones, say I’m on my way (she’s a good lass, she could have worked this out for herself, but I’m panicking at this stage), throw my coat on and run (well, jog … well OK, walk fairly fast) down the road.

I’ve only gone a couple of hundred yards when a horrible realisation dawns. I phone the boss and ask her to check my calendar. Sure enough it’s NEXT Monday I’m meeting my friend for coffee. Another few minutes wasted out of a busy day!

Positive R.A. stuff:

  • Racing down the road and my knee didn’t even twinge!

4. Had to take middle-sized cat to the v-e-t this evening. Hubby rang at about 4:30 to say there’s no way he’d be home in time. ‘That’s fine,’ says I, ‘I thought you wouldn’t be.’ I wondered why he was sounding so bothered about it. Then I got home, put MS cat in the box, picked it up and thought, ‘AH! That’s why hubby’s worried.’ I’d forgotten that MSC weights a tonne (approx.)

Positive R.A. stuff:

  • OK … it hurt, I can’t deny it … but it didn’t hurt anything LIKE as much as it has done in the past!

So hurrah – what a great day – what a lot of signs that the MTX might be doing its job properly at last!

* Names have been changed to protect the idiot.

Hospital appointment lost …

August 11, 2009 at 9:01 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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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 …

New NICE guidelines on RA

March 9, 2009 at 9:56 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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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!)

Here’s a a link to the patient guidelines if you want a laugh or cry. And here’s a link to the healthcare professional guidelines if you actually want some 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.

I’m glad nurses are more organised than consultants!

April 15, 2008 at 8:29 pm | Posted in Me, rheumatoid arthritis (RA) | Leave a comment
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OK, that may not be a general rule but it seems to apply to mine! I had my first appointment with the ‘rhuemy nurse’ today – a.k.a. Rheumatology Nurse Practitioner – a very nice lady who kindly sorted out my next consultant’s appointment (he’d forgotten), gave me a letter for my GP asking them to continue prescribing the drug I’m on (hyrdroxychloroquine) because he’d forgotten, and gave me the hospital’s own rheumatology support line number because … he’d forgotten.

Well, I suppose the important thing is that he’s good at knowing whether people have rheumatoid arthritis or not, and what to do about it – admin is for us lesser mortals.

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