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.