Tags: #futureofhealth, arthritis, Conference, consultant, doctor, Future of Health, GP, Health conference, hospital, nurse, physiotherapy, R.A., RA
I’m on my way to the bright lights, big city of London for the Future of Health Conference 2014. And if Simon Stevens can pull off his Five-Year Forward View then he will indeed be a Wizard – and not just a Wizard of Oz.
The plan has a lot of good things. One is a focus on prevention – something really fairly new to the NHS if they’re going to take it seriously, not just say ‘Do you smoke? Do you want to stop?’ when you go for your flu jab at the GP, so that they can claim their smoking prevention bonus!
Then there’s a focus on patients gaining control of their own care. Sounds great – but what does it actually mean? Maybe I’ll find out on the train down as this is my planned reading matter.
Then they want to break down barriers in the NHS e.g. between GPs and hospitals, doctors and social services etc. Well I don’t think that’s anything new on the wish list front – it remains to be seen whether they can actually change deeply embedded cultures to get it done!
GPs are going to be given the option to combine with other specialists, e.g. mental health and social care, to form ‘Multispecialty Community Providers’. Hang on – isn’t this just the old consortium idea under a fancy new name? Sprinkle a little magic name dust over an old idea and see if it blooms into a beautiful new service.
There’s other stuff too – if you’re interested go and read my planned reading material link above – but those are the bits that resonate with me.
This tweet by the King’s Fund, an independent charity focussing on improving UK healthcare, focuses on where the money’s going to come from – always a good question in the NHS, and even more so in this economic climate!
Part of the new plan involves ‘managing demand’ and while I’m not sure I agree with everything in the link below, there are some good points, and some points I haven’t quite got my head around yet.
I can’t help thinking managing resources (not just human resources) and managing burnout should also be high on the agenda.
This is certainly not just an American issue. It’s something we patients see all the time. It’s also not just in doctors. Some of my previous posts about nurse practitioners and even physiotherapists would suggest that it’s ‘health care professional burnout’ that needs to be a concern, and is ladling on more models and targets etc. actually going to help with this? I doubt it.
And this from the King’s Fund again:
It’s suggesting that the NHS has too many doctors and not enough support staff including nurses, considering that the new plans focus on integrating more and using nurses for EVEN MORE stuff. I’m ambivalent about whether that’s such a great idea anyway, but if it’s going to happen then how could the NHS have predicted and trained the right number of doctors/nurses given that a) some bright spark comes in and shakes up the NHS every 3-4 years so no one can plan anything anyway and b) medical schools aren’t going to stop training doctors because they’re funded on how many doctors they train …
It makes my brain hurt! I’m so glad I’m not Simon Stevens. Good luck Mr Wizz. See you on Friday at the Future of Health Conference.
Tags: aches, arthritis, GP, hospital, joint pain, knee, NHS, nurse, nurse practitioner, physical therapy, physio, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.
It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!
And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!
I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!
And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.
If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:
- A blood sucker (aka phlebotomist)
- The lab doing the work on the cholesterol
- The hospital secretary
- The surgery secretary who sent out the letter
- The GP who had to call me back and discuss what we’d discussed three weeks before
‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.
Tags: aches, Eye, joint pain, knee, R.A., rhematoid arthritis, rheumatoid arthritis (RA)
Thanks for all the comments. Well, we made it back today, and successfully collected the fabric. (If you have no idea what I’m talking about then you’ll need to read the previous post!) Run4Joy – not sure about ‘spry’, the knee isn’t perfect … in fact neither knee is as good as it was a couple of days ago, but both are much, much better than yesterday!
Maggie, good point! We made it back and this time we got to the nature reserve – and very lovely (and flat) it was too. You can’t see in the picture above but between us and the church there’s a lovely river (the River Dove), teaming with damselflies and dragonflies. Most of the (very small) reserve is a wild flower meadow, so a jolly nice place to visit in the summer!
Carla, I’m sure you’re right – I had been overdoing it, so we had a very short and leisurely walk around the reserve and then headed back home and put our feet up. Poor Hubby, having done all the driving two days running … not to mention the drive up to the coast on Friday night for a walk around Cromer, Blakeney and Wells (did I mention I might have overdone it lately?), was more in need of a feet up afternoon than I was!
Tags: aches, anti-inflammatories, arcoxia, arthritis, doctor, flare, medicine, methotrexate, MTX, R.A., RA, reducing tablets, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tablets, weather
You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!
I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.
I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.
Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!
Tags: arthritis, autoimmune arthritis, autoimmune disease, Rheumatoid arthritis, WAAD, World Autoimmune Arthritis Day
World Autoimmune Arthritis Day, a 47 hour ONLINE Virtual Convention that starts at 6am ET/USA (11am UK) May 19th and ends at 5am ET/USA (10am UK) May 21st.
Anyone interested in finding out more about autoimmune arthritises can join in, but you MUST register. If you want to attend the live events it’s $5 before May 19th or $7 ‘on the door’ (it’s all virtual of course!).HOWEVER you can also register for free if you just want access to the library of info and all the free resources, which will be downloadable until May 31st.
For info on all the great live events taking place, go to the registration page here.
Tags: aches, autoimmune arthritis, blog carnival, joint pain, knee, NHS, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, stress, tiredness, WAAD, WAAD blog carnival, work, World Autoimmune Arthritis Day
This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” I hope I’m not cheating, but I’m going to describe two days – one just post diagnosis and one post-“control” where I am now!
4:00 am A day in March 2008
Wake up hurting – everything’s hurting. My neck and shoulders are very stiff, my back aches, my feet are killing me, one arm is numb and the other has pins and needles going from shoulder to finger-tips – but oddly only the little and ring finger.
Worry – a lot. Come on, I was diagnosed as ‘likely’ are in November last year, and definitely in February – so how come it’s still not sorted. OMG, what if it never does get sorted? Am I going to end up a wheelchair? Will I cope? Will hubby cope?
And where the heck is that physio appointment they promised me months ago?
4:00 am A day in March 2014
7:00 am March 2008
Wake up feeling completely un-refreshed and cursing myself for having spent an hour in the middle of the night worrying instead of sleeping. Worry some more as I creak my way gradually out of bed, gently testing bits of me to see how mobile they are. The relief of shaking off the pins and needles and then plunging my hands into warm water is enormous.
7:00 am March 2014
Wake up, blinking the ‘sleep’ out of my eyes. Slight stiffness. Hubby draws the curtains and says, ‘How’s the Penguin?’ ‘Stiff and achy,’ I reply, but then I realise that this is nothing to how it felt a few years ago, really NOTHING, and instantly feel a bit better.
7:30 am March 2008
Take a hydroxychloroquine and a diclofenac and wonder if they’re helping or not. I know I have to wait another couple of months to find out. It’s frustrating!
7:30 am March 2014
Take a hydroxychloroquine and an ‘arcoxia’ cox-2 inhibitor. I had to stop taking the diclofenac eventually after a nasty stomach upset – the arcoxia are supposed to much worse for the stomach, but so far don’t seem to be worrying mine!
8:00 am March 2008
The stiffness is just starting to think about wearing off. My left knee is very swollen and I hobble out to my car using a stick, to head off to work. I’m wondering how I’ll make it through a whole day!
8:00 am March 2014
Stiffness? What stiffness? Did I say I was stiff and achy this morning? Heavens! I’d forgotten. That wore off in about ten minutes.
9:00 am March 2008
Work – chat to colleague – drink strong coffee – work some more. Try to remember to MOVE because otherwise I freeze into place and struggle to get out of my chair when I need to later.
9:00 am March 2014
Work – chat to colleagues – drink decaffeinated coffee (this change has nothing to do with the RA, but I have rosacea and the symptoms of that are drastically decreased by drinking only decaf coffee rather than ‘caffeinated’), work some more. Move when I want to – it’s not a particular issue any more.
12:00 pm March 2008
Strewth I’m stiff – I got a bit too involved in some interesting work and haven’t moved out of my chair for an hour. Now I’m in the embarrassing situation of needing a ‘comfort break’ rather urgently and thinking it’s going to take me five minutes to un-stiffen enough to get there!
Time for the next diclofenac. Oh no! I’ve left them at home! Mad dash home in the car to get one, and then back to work.
12:00 pm March 2014
Lunch time – get up, stretch a bit, possibly say ‘creak’, which makes my ‘Junior Penguin’ colleagues chuckle, but really I’m quite mobile. Grab a bit of lunch and go for a mile walk – I know it should be longer … and faster … but it’s about what I can manage comfortably in the time I can spare and my knees aren’t right, though much better than they were a few years ago.
Happily no lunch-time tablets any-more – as life-style changes go, this one has had a surprising amount of impact ! I’d really hate to have to go back to trying to remember lunch-time tablets again!
3:00 pm March 2008
Really wondering if I can last until five. If I was on my own I’d be out of here – but I’ve got an employee now and I feel I should set a good example so I stay.
3:00 pm March 2014
Wow – I love this job – time for a bit of a coffee break and then back to some really interesting transcription about language usage … followed, for a bit of a change, by some transcription about sheep diseases! Variety – that’s what I love!
5:00 pm March 2008
‘I’m tired and I wanna go home’ but we’re really busy and I’ve promised someone to get some work back to them this week – I’d better stay a bit longer, even though I feel soooooo tired and achy!
5:00 pm March 2014
I’m outa here – life’s too short! My way of working these days is to delegate or subcontract what I can’t fit in between 8am and 5pm Monday to Friday. I’ve got about 15 hobbies (and one hubby… and friends) and I want time to enjoy them all… especially as, let’s be honest, I don’t know how long I’ll be able to carry on with some of my hobbies, especially those involving a lot of walking or using my hands! I don’t feel negative about it though – things are going well at the moment and I’m making the most of my free time!
6:00 pm March 2008
Still at work.
6:00 pm March 2014
Just leaving a friend’s house. I’ve popped round for a post-work chat and coffee. Feeling pretty fine.
7:30 pm March 2008
Just about manage to get some supper on the table. I only arrived home half an hour ago so it’s ‘oven fish and chips’. 7.5g of methotrexate tonight, with another diclofenac, another hydroxychloroquine and a lansoprazole (stomach settling tablet).
7:30 pm March 2014
We’ve eaten already – I like to eat early and have the evening to play in – especially as I’m usually in bed by 9:00 pm these days – I find an early night makes a huge difference to my general well-being.
Tablets were 17.5g of methotrexate (yeah, it’s gone up a lot but I don’t care – it’s working, and there’s still room for it to go up a bit more … although I do worry sometimes about what happens if/when I’m up to 25g and there’s nowhere else to go because my symptoms are too mild to get anti-TNFs etc. on the NHS!), and another hydroxychloroquine and a lansoprazole.
9:00 pm March 2008
Getting ready for bed – head still buzzing with what’s happening at work, worries about health, worries that I’m not finding time to do the things I love and speak to the people I love, worries, worries, worries. Heaven knows when I’ll get to sleep. Read a book for a bit to try to take my mind of it.
9:00 pm March 2014
In bed sipping a cup of decaf coffee that hubby’s just made me. Feeling satisfied that I’ve done a bit of Spanish ‘homework’ and managed quite a chunk of embroidery and a bit of crochet this evening, while watching an interesting documentary on the telly and discussing it with hubby later in some depth. Reading a good book on my iPad and feeling very relaxed.
10:00 pm March 2008
Oh no – I really don’t feel sleepy. I’ll read some more and try to relax. ‘Come on Penguin – light’s out’ says Hubby. ‘Just another five minutes’ I say, knowing he’ll be asleep in four and I can carry on reading!
10:00 pm March 2014
11:00 pm March 2008
Better put the light out. Toss, turn, toss, turn.
11:00 pm March 2014
1:00 am March 2008
At last … zzzzzzzzzzzz…..
1:00 am March 2014
2:00 am March 2014
Wake up – stiff, in pain, pins and needles – wriggle about until I feel vaguely comfortable, lie awake for 20 minutes and eventually drift off to sleep.
2:00 am March 2014
Wake up – roll over – zzzzzzzzzzz…………….
And so another day starts in the life of Pollyanna Penguin …
Tags: arthritis, diagnosis, doctor, fatigue, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stiffness, tiredness
This post will be part of the Word Autoimmune Arthritis Day Blog Carnival. WAAD is May 19th 2014 but you can sign up for it now over at the site. This year’s theme is “A Day in the Life of an Autoimmune Arthritis Patient.” My previous post on this is here.
As I said in my previous post, these days RA doesn’t have such a huge impact on my life. In fact I almost feel a fraud posting about it, but there are some little things, and some equally small hints and tips on coping with them, that I can post about.
Other than making sure I take my medication really regularly, I don’t have to do an awful lot to manage my RA but one of the most important things I do is wear orthotic insoles in my shoes. It certainly helps being married to a chiropodist! These insoles have made a massive difference to me over the years. They’re now just a part of life, but if I do have occasion to wear ‘fancy’ shoes or, as I did yesterday, wander downstairs with bare feet without thinking, I soon know about it – and not in a good way! I had painful feet for years before diagnosis whenever I spent a bit of time walking about, and I just assumed it was the pain everyone had when they said ‘Ooh, it’s good to take the weight off your feet!’ It didn’t dawn on me for ages that when I took the weight off my feet they still hurt, and other people’s didn’t!
Another little tip is warm water – warm water is a wonderful thing if your hands are stiff first thing in the morning! I rarely get significant morning stiffness but if I do, plunging my hands into a sink full of lovely warm water really does help. (Hubby will read this and suggest I should do more washing up, I dare say!)
The other major effect RA has on me, and the most difficult one of all to get through to people who don’t understand the disease (including family, doctors, family who are doctors …) is the fatigue! This really is a big problem and the only way I can deal with it is to pace myself and try to keep to a boring routine of early nights and early mornings. (Obviously if late mornings are an option for you, that’s fine – they aren’t for me as I work full time.) People always pull faces and think I’m making excuses when I’m being a party pooper at 9 pm … and maybe they’re right as I’ve never been a fan of parties … but really, an early night and a good sleep makes all the difference to me.
The final thing is flares – even though my arthritis is mild and controlled I still get flares. They’re a fact of life. The hardest thing is to remind myself during a flare that it may seem like a dark tunnel but there IS light at the end of it. It’s ridiculous – every time I have a flare I feel as though THIS IS IT and things will never be right again. After seven years since diagnosis and quite a few flares you’d think I’d be over this but I’ve spoken to other RA sufferers and people who have other diseases that also flare and die down, and many seem to go through the same thing. It’s not sensible but I haven’t yet found a way to avoid it! So if anyone would like to offer me a hint or tip on this, it would be appreciated! :-)
Tags: cumulative, cumulative effect, Dr Chris Moore, fibromyalgia, pain, paracetamol, Rheumatoid arthritis, tylanol
I woke up this morning and said to hubby, ‘Yay! Good news! I didn’t need to take any paracetamol last night and I don’t need them this morning either! Isn’t that great.’ He agreed it was great. (He’s nice like that.) 11 am today and I was STILL feeling fine – hurrah, I thought, this dratted flare is finally over. Then, out of the blue, bam, agonising stabbing pains in my ankle. Then the light dawned – oh dear – I bet paracetamol has a cumulative effect.
I’m a bit of an idiot really. I KNEW it had a cumulative effect from the point of view of overdosing, and if has that then it’s likely to have a cumulative effect for pain too I suppose! Feeling a bit silly now!
Anyway, there’s a fascinating article here by Dr Chris More, a fibromyalgia sufferer her/himself (doesn’t specify gender on site, so far as I can see!) Actually, I’ve had a wee browse around the site and I think it’s a great resource for anyone with pain issues, not just fibromyalgia sufferers, so I will be adding it to my blogroll too!
Tags: appointment, blood test, disaster, NHS, Rheumatoid arthritis, rheumatology, rheumy nurse, walk-in
Here’s the thing. You may remember that I said back in November that the hospital were happy for us to have 3-monthly blood-tests for methotrexate? Well it turns out that I’d misunderstood. It appears that the hospital are happy for us to have monthly blood tests but only see the surgery rheumy nurse three-monthly. They are NOT happy to have methotrexate patients checked only three-monthly.
Well that would mean attending the walk-in blood-test appointments, and if you reading my most recent post on this you’ll know they’re a joke – or they would be a joke if they weren’t a tragedy. Today I attended my three-monthly test and had a wee chat to my lovely rheumy nurse about the monthly tests.
They seem to have put the blood tests on a Wednesday now, although my last notification was for a Thursday – perhaps it’s both now. If so, it’s not helping. The nurse freely admitted that the system was a disaster and I witnessed the rugby scrum as the board with the little numbers stuck to it was brought out by the receptionist.
Walking-sticks flying, old people beat others out of the way as they charged toward the board, knocking down the poor receptionist who was trying to attach it the wall. An ambulance had to be called to cart off the trampled people when the scrum was over.
OK, I exaggerated just a tad there, but not as much as you’d think!
In spite of the fact that there’s a notice up saying ‘Unless you have a really important personal reason or work, please don’t come in before 9:30 for the blood test’ I don’t think one person in the scrum was under 80. Now the thing is, from experience they all know that there’s going to be a 1.5-2 hour wait, and they have lives too – why on earth should they wait 2 hours just because they don’t have work – so I don’t blame anyone, of any age for coming in at 8:15 plus rather than 9:30 – but the whole thing is just a failure … and surprise surprise, staff are going off sick with stress – so would I be, I think, under the circumstances!
The only light at the end of the tunnel maybe, maybe, maybe, the hospital will see that people are not ‘complying’ with their monthly tests and then tell the surgery they have to reinstate tests with the rheumy nurse each month – I don’t suppose that will happen though. They’ll probably just tell the patients off instead.
It’s not the lack of rheumy nurse I object to – it’s the lack of an appointment time , and a sensible one at that, that doesn’t assume each patient can be dealt with in 2.5 seconds or whatever their crazy trial showed!
Tags: arthritis, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA)
‘What?’ cries anyone that knows me. ‘You? Chatting on Facebook? Didn’t even know you knew HOW to chat on Facebook.’ Well … just about… with a bit of help. This is for IFAA – International Foundation for Autoimmune Arthritis. I’m one of their ‘blog leaders’ helping to spread the word about their work … although I’m not very good at remembering to post etc. so I thought I should make the effort to get over Facebook-phobia! Here are the details about the chat but NOTE IT IS 8:30pm UK time!
Here’s the link: https://www.facebook.com/IFAutoimmuneArthritis Hoping to ‘meet’ you there.