Tags: anti-TNF, appeal, decision, Final Appraisal Document, MP, NHS, NICE, NRAS, RA, Rheumatoid arthritis, severe RA, treatment
NRAS has just announced that NICE, the so called ‘National Institute for Health and Clinical Excellence’ and unaffectionately known as NASTY, which is in fact a national organisation for making sure expensive drugs don’t get paid for on the National Health Service, is re-opening its enquiry into whether a patient should be allowed to try another anti-TNF drug if the first fails to work.
Admittedly this is not a total reversal of their previous Final Appraisal Document, which indicated that patients should not be allowed to try another anti-TNF if the first failed, even in the face of overwhelming evidence that a) patients who ‘failed’ on one anti-TNF frequently had success with another, as these drugs are all quite differnet and work in different ways to each other and b) a patient who had failed on this last line of treatment was likely to already be suffering from severe RA (Because in this country you can’t have an anti-TNF at all on the NHS unless your RA is severe, even though evidence suggests that the earlier you treat with an anti-TNF, the more succesful you are).
The fact that NICE have ‘backed down’ to the extent of even revisiting this is great news though, and it proves that they are forced to listen when we all stand up and shout! Thanks to NRAS and all the other organisations who appealed against the Final Appraisal Document. No thanks to my MP, who did at least stir himself to write a letter to the Minister for Health but then failed to understand her response and sent me a useless letter saying something like ‘It’s OK – this hasn’t actually been decided yet’.
Tags: Add new tag, appetite loss, arthritis, hospital, losing weight, methotrexate, NHS, rheumatoid, rheumatoid arthritis (RA), rheumatology, rheumy nurse, rhuematology nurse practitioner, slim, weight loss
But before I tell you why I’m glad I have to tell you about my slightly hysterical Rheumatology Nurse Practitioner (aka rheumy nurse) appointment. Although I had pretty much read everything there is to know about methotrexate for the lay-penguin, the good, the bad and the ugly, and although the consultant had already said I should go on to methotrexate, before I started it I had to make a separate appointment to see the rheumy nurse, so she could ‘give me the methotrexate chat’. And give me the methotrexate chat she did!
To be fair to her she was quite human to start with, apologising for the whole mix-up with the early arthritis clinic etc. (Not that she admitted any liability of course – just apologising ‘on behalf of the whole hospital’.) Then she launched into ‘the chat’. Well, she was so heavily on autopilot that she actually repeated an entire paragraph, word for word, and didn’t even know she’d done it! But then she topped it all with the most patronising comment I’ve ever heard.
She explained that you had to take methotrexate on one day of the week, the whole weekly dose in one fell swoop, and that you then took folic acid a few days latter. The killer comment was, ‘It’s very easy to remember. You take m-m-m-methotrexate on a M-M-M-M-Monday, and f-f-folic acid on a F-F-F-F-Friday.’ I was too gobsmacked to come out with a sharp comment like ‘Blimey – what do you do if you have a patient with a stutter?’ or ‘P-p-patronise me again and I may have to h-h-hit you,’ which was rather a shame.
Anyway, the good news is that I’ve been on the m-m-methotrexate now for about six weeks and although I’m certainly not on top of the world I do, on most days, feel a lot better than I did. And an added bonus is that although it’s not making me feel nauseous (most of the time) it IS putting me off my food – which is great as I’d like to lose about two stone … I’ve lost 9lb in the last three or four weeks, and although I know I have to be careful to eat a balanced diet and I know it’s not healthy or sustainalbe to lose weight TOO fast, I’m still rather chuffed. (I know that appetite loss can be a real problem with methotrexate for slim people, but it won’t be a problem with me for quite some time!)
Tags: arthritis, consultant, hospital, national health service, NHS, nurse practitioner, RA, rheumatoid arthritis (RA), rheumatology
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.