The National Rheumatoid Arthritis Society (NRAS) in the UK has a section on ‘Health Unlocked’ which is a networking site for patients and care givers for all sorts of conditions. The NRAS site on Health Unlocked is here. Some parts of the NRAS site can only be viewed by NRAS members (or which I’m proud to be one) but others are open to anyone who joins Health unlocked (which is free). The thing that most impresses me (even if they won’t link to my blog (or anyone else’s) presumably for fear of being thought to condone the terrible things we say ) is they have a ‘community blog’ where anyone who’s a member of NRAS Health Unlocked can just throw up a post – no mess, no fuss, no need for a wordpress or blogger account, and no need to worry about regular posting, statistics etc. You just post your thoughts, frustrations, feelings, requests for advice etc. and lots of like-minded people read them and post replies. It doesn’t matter if you only post once, and if you want you can post every day (or several times a day) then you’re very welcome to do that.
Of course it is, and it has to be, ‘policed’ by NRAS – so I suppose one isn’t quite as free as if you have your own blog. I probably wouldn’t, for instance, post factitious comments about my doctors and nurses on there! But it works – it really works… there’s lots of interesting content and discussions on there, and it’s also an opportunity for people who really don’t feel well enough to maintain a blog of their own (or who just don’t want to) to still get their thoughts heard.
I have to confess that my initial thought was, ‘Community blog? I don’t need that. I’ve got a blog.’ I was wrong – I’m hooked! :-)
Once again, well done NRAS.
Tags: arthritis, consultant, doctor, GP, NHS, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), thyroid
OK, here’s the thing – the geniuses at my local NHS physo department (or should that be genii?) have decreed that in order to ‘be in line with the private sector’ they will only give any patient a maximum of six appointments before they kick them out. (The last three words are, of course, my terminology and not theirs!)
I asked Lovely Physio how this was ‘in line with the private sector’, as I had had to have quite a bit of private treatment before I got into the NHS programme and oddly enough they hadn’t been anxious to see the back of me after six appointments. No surprise there – I was paying them. Why would they want to be shot of me? She said something like, ‘I have no idea, but that’s how they’re presenting it to us!’
I suspect the idea is that by ignoring the fact that there are people with chronic conditions who can benefit enormously from regular therapy and pretending that everyone they see can be ‘cured’ in six appointments, they can massage their figures by getting the waiting list down from the current five weeks to a more ‘in line with the private sector’ one to three weeks.
The complexity of the system emerges from the fact that it’s general practitioner budget that pay for this treatment, but once you were being treated, until now, it was up to each physio to decide when and if to discharge. The GPs had little or no say, but they had to pay. So the idea is that you now have your maximum of six appointments and then go back to the GP if you feel you need to still see a physio, to get re-referred, as I mentioned in the previous post. The GP can, of course, say no. I suspect if I see the one that knows me she would say yes … we’ll have to wait and see, but even if she does we’re looking at a five-week waiting list right now.
One silver lining in the cloud – they have an SOS system whereby if I need to see my physio in the next couple of months I can phone and make an appointment saying I’m on the ‘SOS list’. I can then go in under that and have maybe six appointments then before getting kicked out! Hopefully I won’t need to see her in the next two months, but last time I thought that I only lasted three weeks …
Unfortunately I feel I have very little fight in me at the moment – I don’t know if that might be something to do with the thyroid issues i might or might not have, but that’s the way it is!
Tags: arthritis, fatigue, medication, pill tray, pills, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, tablets, tiredness
I wondered why I was feeling so peculiar this morning … put it down to the fact that hubby and I both slept terribly last night, as did half of Norfolk if hubby’s patients’ comments are anything to go by. Now I wonder if it was more than that.
When I got home this evening I went to take my evening pills (augmented at the moment with antibiotics for the lump doing Vesuvius impressions on my arm) and found it empty.
I then had a vague memory of taking my pills after breakfast this morning and thinking, ‘Odd that I forgot to take them before breakfast as I usually do!’
You guessed it – I didn’t forget to take them before breakfast. I had my evening pills about twenty minutes after my morning pills.
I think I should probably be panicking and phoning NHS Direct and stuff, but given that that was now nearly 12 hours ago and I’m still sitting here writing this, I figure there’s probably no need. Luckily the only apparent ‘side effects’ were the desire to eat a horse (not literally of course, although who knows what went into the pasty I ended up having, most unhealthily, for lunch) and a feeling of general wooziness which may have had nothing to do with it given that a) I did have a lousy night and b) I’ve been feeling dopey all week!
Tags: arthritis, fatigue, fibromyalgia, RA, Rheumatoid arthritis, rheumatoid arthritis (RA), tiredness
One really important positive I forgot to add to my last past was that because I already have RA I’ve been through so much of the crap that other people have to deal with when they first get their fibromyalgia diagnosis! I already know ALL about pacing myself (OK, so I don’t do it so well, but I know all about it), I’ve already learnt to deal with the guilt that comes of telling friends I don’t feel well enough to visit or whatever, and I’ve already learnt to live with the, ‘You can’t be ill – you look fine,’ attitude of people that don’t know me well. Perhaps most importantly, I have learned to tell my loved ones when I feel like death warmed up, and not to expect them to know as if by magic. Recently the importance of actually telling them when I felt pretty good also dawned on me – after weeks of feeling lousy, if I have a good day it cheers me up enormously, so it’s important to share some of that cheer with hubby, my mum etc!