Tags: Ask the Doctor, aspirin, chemist, Daily Mail, diagnosis, doctor, Dr Martin Scurr, GP, health funding, Martin Scurr, minor illness, over the counter, pharmacy, public health
As usual, there’s something I’ve been trying and failing to put into words for ages, only to find that someone has done it very elegantly for me already! I’m going to copy it to our local practice manager (who is also a friend.)
I am not a fan of the Daily Mail, but I stumbled across an ‘Ask The Doctor’ article in their online paper because it was about R.A. Tagged onto the bottom of the article is this, which I’m going to quote in full, because it says everything I’ve been wanting to say for ages about continuity of care etc. (I’m not sure about the copyright implications here but I’m giving full reference to the original article by Dr Martin Scurr in the Mail Online (Wed Jan 6th), so hopefully it’s OK!
By the way… There was recently a conference organised by the manufacturers of over-the-counter medicines. Many of the great and the good attended – shadow health minister Mark Simmonds, and some of the leading lights from the Royal College of GPs.
The theme of the meeting was to change the way the public thinks about minor illness. There is a push to dissuade patients from consulting their doctors for what might seem to be small ailments, and to encourage self-diagnosis and treatment. It’s all about saving money.
But the involvement of the hallowed seniors of my profession – in what looks rather like a sales drive for those peddling over-the-counter medicines – has set me thinking.
In medicine, no complaint is defined as minor until it has been thought about, in context, with informed judgment. I was always taught that general practice is about the ongoing observation of someone’s health over a lifetime. A lot of apparently disconnected elements might add up to quite a lot.
Yes, I believe in personal responsibility for health – doctors are only guides on a rocky path. But now the leaders in our profession seem to be saying it’s time for patients to look after themselves – implying that doctors have created a culture of dependency. It’s just not so. The problem with academics and medical politicos is that most of them occupy those lofty positions because they opted out of full-time work at the coal face.
How many patients with acid reflux have Barrett’s oesophagus, which can lead to cancer? How many with indigestion have got helicobacter infection, which can lead to stomach cancer? And yet they are expected to go to the chemist. We are supposed to be entering a new decade, not heading back to the last century. We must retain our devotion to patients as guides on that rocky path.
I actually disagree about it being driven by the over-the-counter drug companies. I think it’s driven by the fact that there aren’t enough GPs to see the patients. Our practice has something like eight GPs for 20,000 registered patients, and although there are some patients registered that they never see (because they’re healthy) we have a high elderly population here and the practice is very over-stretched, but there’s no more funding available; so the government thinks the answer is to send us all into the chemist for an aspirin.
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: cold, doctor, fu, GP, methotrexate, MTX, R.A., RA, Rheumatoid arthritis, sore throat
1. Don’t become a GP if you have the personality of a lettuce.
2. Remember that it’s probably going to get pretty boring by Thursday afternoon – loads and loads of six-minute appointments seeing snotty little people who should have stayed at home – but it’s part of YOUR JOB NOT TO SHOW HOW BORED YOU ARE!
3. When examining a patient it might be helpful to say things like ‘I’m just going to feel your neck for glands’. Otherwise you may one day find yourself pinned to the wall at the back of the surgery by an angry young man who thought you were trying to strangle him.
Yes, you guessed it – I just saw a GP I didn’t really take to. And, as you might also have guessed, I’ve gone down with a stonking cold, probably courtesy of hubby, although mine is NOT flu. (No, I’m not suggesting he’s had ‘man flu’ – he had a temperature of 102 for two days; but I haven’t had a temperature at all.) It went with an equally stonking sore throat. When I looked in the mirror (as you do … don’t you? Well I do), I could see little red wheals right across my throat. When the GP looked he said he couldn’t see anything. Hmm, that’ll be because my tongue was in the way I expect. However, as he’d already decided to give me antibiotics given the fact I was on MTX for the R.A., and as we had had an instant personality clash and I wanted to get out of there a.s.a.p. I didn’t push the point.
So – all the usual drugs plus paracetamol, sudafed, antibiotics (third lot in a month I think). I’m heartily sick of all these drugs … but then again, the MTX is WORKING, so who am I to complain?
Tags: arthritis, blood test, cats, GP, methotrexate, MTX, nurse, RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stress
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
Penguin: Number 2 … please.
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.
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: Add new tag, arthritis, doctor, doctor's receptionst, doctor's secretary, GP, knee, knee joint, knee pain, Rheumatoid arthritis, steroid injection, steroids, swelling
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.
Tags: arthritis, diagnosis, doctor, GP, RA, Rheumatoid arthritis, rheumatoid arthrtis helpline, steroid, steroid injection
I’ve had a frustrating morning – can hardly lift my left leg at the moment and both knees very painful, and so I phoned the rheumatology helpline at the hospital and explained the problem. My nurse actually answered the phone. Oh good, I thought. She didn’t remember me … but I can’t blame her for that as we’ve only met once. It’s still good because if someone else answers they say ‘Oh you need to speak to Jean and she’s in clinic…’ , so at least I jumped that hoop.
Told her the problem. ‘What do we normally do about your knees, Penguin?’ she says. Well that’s helpful.
‘Well since I only got a diagnosis in April and this hasn’t happened before, not a clue!’
‘Oh, well if it’s specific joints we usually inject them with steroids’ …lovely, ‘and local anesthetic’. Presumably to numb the pain from having the injection, rather than the pain I’ve already got. Oh joy!
Hmm, in my naivety I’d been anticipating more of a tea and sympathy approach followed by something like ‘try a support bandage’ or ‘have a hot bath’ … guess I have a lot to learn about RA!
The nurse continued, ‘But you need to see your GP first to confirm it’s to do with the arthritis. I’d be surprised if it wasn’t.’
‘I’d be bloody surprised if it wasn’t … what else is it going to be?!’
‘Well quite, but as I can’t see them we do need to get someone to have a look …’
Thinks – I can look, I have a brain too, and guess what, my knees are all swollen and I can lift the left one. But no, that’s not good enough.
‘Well it won’t be today, because if you don’t get in at 8.30am they won’t see you on the day,’ I says.
Oh well she says, full of NHS optimism, ‘Phone and see if they have a cancellation.’
They did – tomorrow. So I’ve taken that.
I suppose I can be glad about the fact I don’t have to queue up at 8.30 tomorrow morning to get an appointment, only to have to come back at 9.30 to have the appointment, considering how ‘interesting’ standing in line is at the moment – almost as much fun as going up stairs.
I didn’t dare ask how many weeks it would be before I got into the day unit even if the GP did confirm it – or how many weeks it would be for the GP to even write a referral letter.
Maybe I just need to burst in to tears at the GP tomorrow to get something done. Shouldn’t be hard the way I’m feeling.