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 …

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!

I’m glad my doctor’s secretary is so kind

July 23, 2008 at 5:46 pm | Posted in Me, rheumatoid arthritis (RA) | 1 Comment
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Just went to the doctors to pick up a letter the doc said he’d write so that I could send it to the train company in the hopes they’ll refund the tickets for a trip to Wales I had planned, but had to cancel because of the state of my knee. ‘Pick it up early next week’ he said. So I thought well, I’ll leave it until Wednesday to make sure it’s done.

Went in this evening – explained to the receptionist. She looked in the file. ‘I’m sorry, it’s not here.’

‘He did say I should pick it up early in the week.’

‘Well it’s only Wednesday now love.’

‘Well to my mind early in the week means Monday or Tuesday, and I left it until today just to make sure it was done.’

‘Well it depends how you look at it really, doesn’t it love? Early in the week could mean Wednesday too.’

‘No, not really. I’d call that midweek.’

‘Oh well, nothing I can do I’m afraid – it’s not here.’

‘Well could you at least check my notes to see if he’s made a note to do it?’

‘Well … I don’t know if …’ Sees the steam coming out of my ears, ‘Well, I’ll have a look … Oh, well it says here it was done yesterday. Thing is the secretaries have all gone home now and perhaps they haven’t typed it yet. The only thing I can suggest is that you call and ask for Dr Dashes secretary, Debbie, tomorrow, and she’ll be able to tell you exactly what’s happened to it.’

So off I go, fuming and steaming, not to mention limping, only to get home and find a letter on the mat addressed to me. Open it and what do you think is inside? The letter from the doctor.

Soooo thoughtful of the secretary to realise that she’s writing a letter about someone with a very swollen and painful knee, and wouldn’t it be a kindness to post it? Such a pity the doctor wasn’t equally thoughtful … as he’d told me to pick it up.

There, feel better for the rant!

More importantly my knee is also finally on the mend – I think the steroid injection, however painful it was at the time, has really done the trick.

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