Tags: arthritis, methotrexate, MTX, RA, Rheumatoid arthritis
Hmm, how many times have I read posts about self-injecting drugs and breathed a sigh of relief that I don’t have to do that? Too many to count. Well, that time has ended, my friends – I will be injecting my MTX in three weeks’ time, after my ‘education appointment’ with the hospital. Mind you, I gather from a small amount of on-line research that this is a very easy subcutaneous (under the skin) injection; not the sort of nasty intra-muscular injection that biologics users have to endure. It seems to be a simple (?!) question of using something like an epi-pen to squirt the MTX in with, but I will find out more when I go and get educated. Here’s hoping I get the sweet nurse I’ve been speaking to on the (yes, actually helpful) helpline, and not the bored and horrid nurse I’ve never liked from day one. We shall see. Either way I will endeavour to be a good girl, listen hard, take it all in and get it right first time. (Not getting it right first time could be messy!)
The reason I’m moving to this course is that I sometimes get stomach problems that may or may not be from the MTX and that many people who take the dose orally don’t get the full benefit as some of it is digested, rather than moving on to the bits it needs to go to in order to work. By injecting, I can keep to the same dose, rather than increasing and risking the side effects that go with that, but hopefully get more benefit from the dose as all of it will go straight to where it’s supposed to go. That’s the theory, anyway. Apparently there are no other advantages or disadvantages of injecting – other than the obvious mild unpleasantness I’m assuming for the injecting!
Tags: accident, ambulance, blood test, breathalyser, car, holiday, lorry, police, RTA
After the Barcelona fiasco earlier in the year (we were supposed to go and we both went down with something fluey, which I topped up with sinusitis), I’d decided to treat myself to a little break this week – a two-day ‘painting with coloured pencil’ course in Wiltshire. I can’t tell you how much I was looking forward to it! (Lots!) I set out at a bit after 9 o’clock this morning, and had planned my first stop to be Anglesey Abbey near Cambridge. I’d planned in three main stops on the way down – fun places to visit rather than just a roadside café or services, and that was the first. I was only seven minutes away according to the Satnav, at a rather odd road junction where the left-hand lane takes you on to the A11 and the right-hand two lanes remain as the A14. I assume what happened next was that that the lorry I was driving past, me in the middle lane and therefore left-hand lane for the A14, he in the left-hand lane for the A11, suddenly realised that oops, he wanted to be on the A14 … so he pulled over. I couldn’t swear that he actually hit me – I know I saw him coming and panicked and I know I lost control of the car – and I also know that I wasn’t speeding because I’d just checked my speedo. I think he must have actually hit me because there is damage to two sides of the car – the left-hand side, which he presumably scraped and pushed, and the right-hand side where I hit the central reservation. I then spun and bounced back to the left-hand A11 lane where I pulled to a stop and put on my hazard warning lights. After a few minutes I realised that I couldn’t safely pull off the road from this point and I couldn’t easily assess the damage … and cars were having to pull round me causing chaos to all the traffic in the area. So having ascertained that there wasn’t smoke coming out the bonnet I waited for a break in the traffic and pulled out … thumpty-thumpty-bump … OK, this isn’t good! Double flashers back on and drove, so the police told me afterwards, half a mile or so up the road until there was a safe stopping place big enough for me and a breakdown van.
Apart from shaking a lot I thought I was fine so priority number 1 – ring my breakdown cover! That sorted – text hubby. Then phone the police. I was just about to call the police when hubby phoned me and a moment or two after that, having reassured him that I was fine, I said, ‘Got to go! The police have arrived.’
A very nice copper came over and said, ‘Was it you that called to say that you’d hit the central reservation?’ I said it wasn’t – that they’d been next on my list, but that my priority was the RAC! He laughed and said that was probably an indication that I was OK! He said he’d secure the area and put cones and warning signs out and then come back to find out what had happened. Before he’d finished, a very short time later, and ambulance pulled up. I told them I was fine but of course they had to do their thing, check everything and make sure. They were absolutely lovely! A very different experience to the only other accident I’ve had (other than someone reversing into me a while back – no ambulance needed!)
They checked for neck injuries by the side of the road, although as they agreed, I’d already walked out of the car and waved at them when they arrived, so not a lot of point saying ‘Don’t move your neck!’
Then I got on board and they checked my blood pressure (‘Slightly elevated, love, but better than mine!’) and took a blood test (presumably for alcohol and drug testing). I asked for some water. ‘’cause we can love – or would you prefer vodka.’ I said I would but I thought the police might not be too impressed if they breathalysed me later, so they gave me water. ‘Any illnesses?’ I mentioned the RA. ‘OK, but no strokes or heart attacks?’ ‘No.’ ‘No asthma, diabetes?’ Nope. ‘No amputations?’ ‘Actually this arm’s false’ I said with a grin. ‘Hmm,’ he said, ‘not sure how we’re getting blood pressure from it then!’
Then he checked various things, eyes, movement of limbs etc. to ensure everything was fine. All seemed very thorough – the only thing missing was a nice cup of coffee! (I was mighty grateful for the water though!)
‘Let me be the first to say,’ said the ambulance man, ‘and believe me I won’t be the last, the important thing is that you’re OK. The car is only a lump of metal and it’s done its job in protecting you, and nobody else was involved, so it’s all OK.’
I wanted to say, ‘Of course it’s not all OK! Yes, that’s the most important things, but my holiday’s screwed AGAIN, my car might be a write-off, I’ll have to go back to work tomorrow, I’m going to have to tell everyone endlessly about this, I wanted to go on my painting course and basically I’m FED up,’ but I just agreed pleasantly. He’d been FAR too nice to be grumpy with!
Oh boy was he right though about not being the last person to say it!
They took the various paperwork details they needed and had a general chat, all very relaxed, and then the policeman came and joined us, having closed the lane I was in with cones etc. He was also very relaxed , took some details and asked what had happened, wrote a short ‘statement’ and got me to sign it. ‘At least you’re alright though, that’s the important thing.’ I bit my tongue. Then a colleague of his arrived – knocked on the ambulance door, poked his head round and asked my name. ‘Oh good – it is your car then!’ Then he saw his colleague and they had a bit of a chat and the one in the ambulance got out. Then hubby rang again – nice ambulance men let me sit there and talk to him, and once I’d done that they said they were happy for me to leave, ‘Unless you want to go to hospital. We can take you if you want.’ NO THANKS! I spend enough time there as it is, thank you very much!
Then back out to the road side, by which time MORE police had arrived – first policeman, first policeman’s colleague and now some ‘traffic police’ who probably patrol the A14 as a full-time job as it’s a notorious road for accidents!
Both of the ‘ordinary’ police and one of the traffic policemen commended me on moving the car on from the original accident site – which was lovely because having done it I was thinking, ‘Oh dear! I expect that was a bloody stupid thing to do. I shouldn’t have moved the car.’
One of them came over and said, ‘I’m really embarrassed to have to ask, ‘cause you’ve handled everything brilliantly and you’re clearly completely sober, but I’m afraid I’ve got to ask you to take a breathalyser test.’ I assured him it was no problem … like I had a choice, but of course it was no problem! ‘I have to ask you … have you had an alcoholic drink in the last 20 minutes.’ ‘Not unless what the ambulance men told me was water was actually vodka!’ You always hear people saying, ‘For gawd’s sake don’t try making jokes with the police – it just makes things worse’ etc. but he was laughing too so that was OK! Of course the breathalyser came out with a zero reading. (I should think so too!) ‘May I present you with this tube you just blew into a souvenir of the event?’ I thanked him prettily and said I’d treasure it. Then he said, ‘At least you’re alright though … and no one else is hurt. The car’s …’ etc. etc. My tongue was starting to hurt from all the biting.
They told me there was CCTV on the road … but it wasn’t looking in the right direction at the time – of course!
I couldn’t remember who my insurance company were, having had the fiasco with Churchill last year and changed companies, so the police very kindly looked up all the details for me and gave me the insurance company, the policy number and the number to phone!
Then the traffic police decided that actually they didn’t really need the cones and warning signs as where I’d pulled off was pretty safe, so they took them all down again! Seemed like a bit of a waste of time, but of course the first policeman, when he started securing it all, hadn’t even got the details of where the accident happened so perhaps thought it was there and there could have been stuff in the road. (Actually, given the state of the car – just about every panel damaged plus two completely flat tyres and one more puncture) I suppose there could have been! Anyway, the traffic police cleared everything away again and said they’d be off – I felt rather lonely, they’d all been good company and the RAC had just rung to say I’d have another hour’s wait. (This had all taken an hour already from when I first phoned them.)
So I decided I might as well use my time sitting by the roadside wisely! I phoned the insurance company. Well, as you can probably imagine if you’ve ever had to notify an insurance company of an accident, that took a good half hour or so – but they were mostly very helpful. When I first phoned he could obviously here all the traffic noise. ‘Good heavens – are you still roadside?!’ I explained I was but might as well speak to them while waiting an hour for the RAC! ‘Are you OK though?’ I explained that the police and ambulance guys had already been and I was fine. ‘Oh well, that’s alright then, that’s the important thing …’ etc. (Don’t get me wrong, I KNOW they’re right, but it’s a surprisingly uncomforting thing to keep hearing!) He took various details and was helpful and sympathetic except for when he wanted to know what the damage to the car was – at this point I guess he was more reading his script than actually thinking! ‘Starting with the passenger side front, can you tell me what damage there is on the car?’ So I told him. ‘And passenger side back?’ So I told him. ‘And driver’s side back?’ ‘Don’t know for sure – there’s damage but I’m not stepping out into the traffic to assess it for you!’ ‘Oh no – of course not. Sorry! What about the undercarriage?’ ‘No idea – and again I’m not going to go crawling around on the ground to find out!’
When I got off the phone to them, there was a voice mail (if one good thing has come of this it’s that I’ve FINALLY learnt how to pick up voice mails on the iPhone!) from the RAC. ‘Just checking that you’ve been picked up. Our recovery contractor says he’s at the scene.’ WHAT? No he flaming well wasn’t! So I phoned them back and she tried to coordinate with him while I was still on the line. Of course I didn’t know exactly where I was. Hubby pointed out later that the SatNav would have given me a precise location if I’d pressed the ‘help’ button, but I didn’t think of that! Anyway, he finally did find me, having driven past and then had to find somewhere to pull off and come back.
Of course he hadn’t actually SAID he was at the scene – it’s a tracker van – i.e. they can check on the map where he is, and they’d seen him go past and their super whizz technology had decided that meant he’d done the pick-up! Anyway, he was a terrific young lad too when he actually did arrive, and he was able to take me into the garage in Norwich that the insurance had allocated, from where Hubby was able to pick up. We chatted all the way there. ‘Oh well, at least YOU’RE alright … that’s the important thing.’ (Bite, ouch.) He was also telling me all about his hobby – ‘Drifting’. This involves driving high-performance cars around proper race tracks, causing the back wheels to spin and then just ‘drifting’ around the track – competitively! ‘The exhilaration of knowing you could hit the crash barriers at eighty miles an hour is just fantastic!’ To which I replied that I had just had the pleasure of hitting the crash barrier at about 70 miles an hour and it wasn’t especially exhilarating. His cheerful response to that putdown – ‘Ah, but you should try it in a high-performance car.’ Boys!!
The garage were great too – very pleasant and sympathetic and FINALLY, five hours after leaving home and about six after my last drink other than the ambulance men’s water, I got a coffee. What a relief that was. ‘What happened? Oh well, at least YOU’RE alright …’
While I was at the garage I phoned the guest house I should have been staying at. They’re absolutely lovely, and they were able to refund my deposit because they were able to let the room to someone else, so that worked out brilliantly too. ‘Well, the important thing is you’re alright. That’s the way to look at it really – I mean it’s a real shame, but that’s the most important thing’ said the lovely Mary, quite correctly! (Ouch – poor tongue.) I definitely want to still go on a painting course and I’ll definitely try to book them again – they’ve been so helpful!
Then hubby kindly picked me up … ‘Oh well, the IMPORTANT thing is that YOU’RE alright.’ Well, yes, and I’d certainly hope that my own beloved hubby would think so, BUT … at this point I was about ready to thump the next person that said it!
When I got home I phoned my friend Gerbil, who had a not dissimilar experience a few months ago. She gained HUGE brownie points by NOT saying that fateful phrase and giving my tongue an opportunity to cover.
Now the biggest worry, ignoring the fact that YET ANOTHER holiday has been ruined, is that the car might or might be a write off – and if it’s a write off it’s going to be expensive and stressful to find another one! Wish me luck on that score!
Tags: blood test, doctor, phlebotomist, Rheumatoid arthritis, surgery
… the only time you can arrange to meet with your mum to give her some important advice about embroidery is at the doctor’s surgery!
In fairness, it’s partly because she’s stupidly busy too and away for the rest of this week!
We both needed a blood test, and we knew there’d be a bit of a wait, so we met, appropriately enough, in the waiting room! You may remember from my last post, things hadn’t exactly gone according to plan with the blood test attempt, but this time it couldn’t have gone better! When I got there, mum was actually having her test, having arrived a little while before me. It couldn’t have worked out better. As I sat down, she came out from the phlebotomist, we had just enough time to go through her needlework problem and I got called in!
I only waited about ten minutes to be seen and I needed that ten minutes to sort mum out!
Hurrah for the surgery – and I don’t often say that! When things run well, they run really well … a pity they don’t run well a little more consistently!
Tags: accident, arthritis, being a burden, burden, crutches, flare, gratitude, horse, joint pain, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I was chatting in the kitchen at work today with a lass who works in the same building. She had an accident at the weekend and is hobbling around on crutches. As an active, sporty person she’s feeling very frustrated – who wouldn’t be – but I was slightly amused (in a sympathetic way of course) at her frustration with losing her independence. I offered to carry her coffee down the corridor for her and she said no, she’d manage. ‘I hate being a burden’ she said, ‘I’m normally such an independent person and everyone’s being so kind and helpful and I’m having to rely on lifts and things for everything, and of course I’m grateful but I HATE IT!’ I do so know the feeling – although I’m incredibly lucky with my RA that it comes and goes so must of the time I can remain independent, but when I can’t that continuous feeling of pressure (entirely internal, not from the people around me) to show gratitude, and that feeling of being a burden is just horrible! I don’t think I can explain that feeling to anyone who hasn’t experienced it – but I know many of you reading this will have experienced it too!
Then she said, ‘And everyone’s got an opinion! “Oh, you’ll have to stop doing that now this has happened” and “If you’d been wearing stronger body protection …” and “You shouldn’t have gone out on a day like that” and “If only you’d thought to do this first …”‘ In fact it was one of those unavoidable things – an ‘act of god’ if you like – something spooked her horse and she came off it. It happens. She wears body protection, she was in a lesson and it wasn’t that bad a day or the teacher (and she herself) would have cancelled. But yes, everybody has an opinion!
‘Oh, eat a spoonful of honey a day and your arthritis will disappear’ – ‘Oh, if you lost weight you’d have no arthritis problems’ – ‘Oh, my mother took a whisky every night and lived till she was 122 without any arthritis symptoms, maybe you should try that’ … Doesn’t that sound familiar? The being a burden thing and the everyone has an opinion thing are two things that I think bloggers on RA and chronic disease blog out rather frequently, but it turns out it’s not just ‘us’.
But at least horse lady will get a full recovery (or I certainly hope so) and no doubt ‘look back on this and laugh’ whereas we folk with chronic disease are a bit more stuck with it! Nevertheless, in true Pollyanna fashion, I’m still grateful (and without that burdensome feeling!) for the fact that my disease is mild and for all the things I can still do … and now I can add to that the fact that I’m very unlikely to be thrown off a spooked horse anytime soon, since I’m very unlikely to be on one!
Tags: aches, arthritis, doctor, exercise, flare, flare-up, joint pain, methotrexate, MTX, NHS, pain, R.A., RA, rhematoid arthritis, rheumatoid, rheumatoid arthritis (RA), rheumatology, work
I woke up yesterday morning with really bad pain in my hip/lower back, but by lunchtime it had passed off, so I had a lunchtime walk yesterday as usual, and very pleasant it was too, until about half-way round, when I got a very sharp pain in the side of my foot, just behind the little toe. (Same leg as the hip pain.) By the time I got back to work the pain was coming in short, sharp bursts lasting up to about 10 seconds and then was fine in between … but in between wasn’t very long! It was happening at least twice a minute. I took paracetamol and, three hours later, ibuprofen, but to no avail. We had to go shopping that night and I limped around the supermarket and then asked hubby to drive home as I was in too much pain. It wasn’t the worst pain I’d ever experienced but it was BAD. My foot just in that area was bright red and swollen, so that sounds like RA, but the odd coming and going of it doesn’t seem quite right. I THINK it was RA and I’m just a weird patient!
Anyway, of course being Monday last night was m-m-m-methotrexate night. I went to bed still in a LOT of pain, and woke up in the middle of the night thinking, ‘OOOH, my foot hurts’ and then again, some time later in the middle of the night, I think around 3:30, thinking ‘OOOH, my foot DOESN’T HURT!’ And it hasn’t hurt since. I have no idea what’s going on or why, but MAYBE it was lucky that that happened on a Monday and the methotrexate kicked in. I don’t think it’s supposed to work like that though, is it? It’s supposed to be a slow build-up, not a week by week thing. Perhaps it was just a short, sharp flare-ette and just finished then. Perhaps it wasn’t RA at all. They mystery of what is and isn’t RA is certainly … mysterious …
That reminds me of the time a few weeks ago when I was getting sharp pains and bad headaches that felt like they were on the outside of my skull. Not the first time this has happened, you may recall. Oh dear, I thought, I hope this isn’t giant cell arteritis – I think it’s that sort of symptom … and then I realised I was wearing a hair-slide that was being pushed into my head by my transcription headphones! Much relieved that I worked this out by myself and didn’t bother the poor, overworked GP with it!
Anyway, the good news is that the answer seems to be ‘not to flare’ at the moment, but I’m having a day off walks this lunchtime just in case it happens again!
Tags: aches, arthritis, autoimmune arthritis
Well, after a food-laden Christmas and New Year, I finally got round to some serious dieting and an exercise plan about three weeks before my (inevitably food-laden) birthday! Having had a fabulous weekend away in Ely and Cambridge, staying in the delightful Poet’s House Hotel and eating their delicious dinner and delicious breakfast (scrambled eggs and smoked salmon on brioche, plus fruit juice, coffee, cereal, bits and bobs … no need for lunch then!), I thought I’d have just a nibble at lunch time. We popped into a coffee shop in Cambridge and I chose what I honestly thought was a small, and fruity, cake type thing so I could say ‘well at least it was fruit’ – only it turned out to be cherry crumble and came with ice cream. Oops.
So anyway, the point is that I decided I’d better get straight back on the wagon. No problem with the diet – right back into the healthy food as soon as I got home, helped by my birthday present from my friend Debbie – a healthy food hamper! The exercise was a bit more of a challenge though. I try to get a walk every lunch time but this week I’ve managed it precisely once. OH DEAR! Today my excuse for not going, apart from being incredibly busy at work and it being grey and gloomy and COLD outside, was that I was going to do my 20 minute embarrassing exercise video thing this evening.
Well of course I got home and didn’t want to do the exercises – so I thought ‘JUST GET ON WITH IT! If you stop, you’re done for!’ So I just got on with it. (Bet you weren’t expecting that, were you?!) I actually got through my 20 minutes (20 minutes and 40 seconds if you’re counting… I was) and was very pleased with myself that I’d done it, although not at a good, high energy level, BUT … my feet felt like lumps of lead (semi-molten) and my knees felt like lumps of wood and the rest of me felt … well, I’ve felt better. Rather disappointing since the last exercise I did, on Saturday morning, went absolutely fantastically and I felt great afterwards – if a little sweaty!
Now, four hours later, my feet still feel like semi-molten lead and my knees feel like … well, maybe balsa rather than mahogany but still not knees … and I’m thinking ‘OOPS – I think I might be going into a flare’ … in which case forcing myself to exercise probably wasn’t the cleverest thing to do after all … but hey, who knew?! I was fine early today – it’s just sprung itself on me.
Hopefully it’ll be one of my famous ‘flarette’s’ and I’ll be all right after a good night’s sleep. Anyway, having just re-read my last blog, I feel a whole lot better already. Today certainly isn’t as bad as that day was!
As things have been so good over the last few months I’m not taking any anti-inflammatories at the moment (with the blessings of my consultant), but I can always take some if need be (also with blessings of consultant), so that should sort me out if it doesn’t sort out naturally.
Tags: aches, broke, car insurance, Churchill insurance, cracked rib, New Year, RA, Rheumatoid arthritis, Spanish lesson, stress, work
Happy New Year everyone! OK, as soon as I wrote that title I realised that today actually hasn’t been that bad. I’m not ill (although I made up for that in December with a bad, chesty cold, a cracked rib from coughing, and a stomach upset, as well as RA niggles), the family’s not ill (including cats) and nobody’s died … well, of course people have died, but no one close to me. (Terrible news from France though!)
So what’s made the day from … erm, purgatory? Well it probably started yesterday when I was definitely suffering from methotrexate brain fug! I was just forgetting almost everything, and what I wasn’t forgetting I was getting wrong – unhelpful in the first week back at work! Today began bright and sunny and I was munching my breakfast thinking ‘Today’s bound to be better than yesterday! What a lovely day. La la la la la …’ Silly penguin! Tempting fate that was.
It all started to go down hill when the lovely sunny day led to having to de-ice the car – a good upper-body work-out for sure, but not much fun with a cracked rib. Then I got into work and remembered a big piece of work I’d been putting off since November so thought I’d better tackle it. BAD idea. It went horribly wrong – I ended up having to delete my ‘Normal template’ in Word because I’d got a lot of formatting in there I didn’t want by accident – and then realised I had just deleted a lot of macros and formatting I DID want … so had to put all that back in again. All in all I spent about five hours doing this work and can only bill the client for about 45 minutes of it!
Then I got home and found a letter from the DVLA – or those of you not in the UK, that’s the folks in charge of driving licences and car tax. ‘Ha, reckon this is a scam’ I said to hubby. ‘It says I’ve got no car insurance!’ I then discovered that the letter the car insurance people had sent me in September saying it was renewal time did NOT say, as I thought it had when I glanced at it, that it would automatically renew if I didn’t contact. In fact it said I had to phone to renew and I’d misread it! So I’ve been insurance-less (which is illegal!) for three months. BUMMER! (I’m a VERY law-abiding penguin as a rule and was quite horrified!)
So with about an hour to go before my Spanish lesson and supper only half cooked I rang the insurance people and asked to renew. Had I renewed in September it would have cost me approximately £190. The quote tonight was approximately £290. (If you wondering who NOT to insure with, it’s Churchill). ‘Come on,’ I said, ‘You can do better than that, surely!’ knowing they can ALWAYS drop the price if you twist their arm … but he couldn’t. Very pleasant chap but ‘I can only tell you what’s coming up on my screen.’ Paid the £290 and said, ‘I do have 14 days cancellation, don’t I? I’m just letting you know, I WILL be cancelling!’ He said he quite understood and that’s how we left it.
So I managed to finish supper as my poor Spanish teacher was also having a bad day and she texted me to say she was running late, which worked for me! We had a long talk in ‘Spanglish’ about insurance companies and how rubbish they are!
Then I went on line to check what deals I could get. Instead of £290, I can get a similar deal with someone else for around £150 – outrageous! And what’s worse, I could get a deal with Churchill for £170! I phoned and told them that and got ‘Sorry, my hands are tied. I can only apologise. There’s nothing we can do as you’ve already had the new policy discounts when you took out the new policy.’ I said they had to be joking – how could the claim there were any discounts on that – and he said sorry again …
Then I checked my poor, ailing post-Christmas bank account and discovered that I couldn’t afford to pay out for another insurance at the moment and THEN cancel the Churchill one and wait for a refund – so I’ve got to wait for some money to transfer from my slightly less ailing work account into my personal account before I make the swap. I will do it in the next couple of days when the money’s cleared. So cross that I didn’t just take the time to go on line in stead of thinking, ‘Just get it done quickly with the one you’ve been with before.’ That’ll larn me!
So all in all I ache, my work day was pants and I’m broke … but like I said at the beginning of the post it could be much worse. Flippers crossed though that from now on it’s going to get much better!
Un próspero año nuevo a todos mis amigos en línea!
Tags: anti-TNF, arthritis, autoimmune arthritis, biologic, biolsimilar, chest, clinician, cold, Conference, fatigue, Future of Health, hospital, NRAS, R.A., RA, Rheumatoid arthritis, sinuses
Well, I meant to write this post about biosimilars weeks ago, but alas, I came back from London and fairly quickly went down with a really bad cold, which I’m still getting over now! It was bad enough, combined with the methotrexate/immunosuppression, to require antibiotics for the secondary infection and it hit chest and sinusses at the same time, so I’ve been feeling pretty poorly!
Luckily Clare at NRAS had asked to write a brief report about the conference for them – on slightly more serious lines than my last post, and I did that pretty much straight away after coming back, before the cold hit, and that included something about the biosimilars, which I’m going to reproduce here. So here we go:
The next talk I attended was ‘Biosimilars: realising the opportunity for the NHS and patients’. Biologic patents are soon to run out. Biosimilars are biologics too, but they are designed to be as similar as possible to the molecules of already successful biologics, reducing the need for as much expensive primary research as went into the original biologics. As they are not identical, and as these molecules are extraordinarily complex, they will still need to go through, and some are already going through clinical trials, because, as Professor Peter Taylor said in his talk, ‘minor structural differences can have disproportionately large effects in patients’. However, there is a lack of education around biosimilars both among patients and clinicians, not to mention commissioners, so their introduction into the NHS could be a complex matter.
At the last minute there were no patients speaking in this talk due to some obscure ruling to do with the pharmaceutical company involved only speaking on panels with medically trained people.
First, Professor Peter Taylor, Norman Collison Chair of Musculoskeletal Science, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, gave a very clear and concise outline of what a biosimilar was. Carol Roberts, PresQIPP Director on NHS involvement in biosimilars was keen to reassure that ‘value’ was based on outcome and not just on price, although biosimilars could be a huge saving to the NHS, £3.8 million. (Actually given NHS budgets that didn’t sound that huge to me, but every little helps!) People with RA on biologics now will probably be pleased to hear that the intention at the moment is to only put new patients onto biosimilars, not to take people off biologics that are working for them and move them onto the cheaper drugs. Janice Mooney, Senior Lecturer in Primary Care, University of East Anglia and senior Rheumatology Nurse Practitioner, pointed out that all clinicians need to be educated in biosimilars, not just patients and consultants. Given that patients may only see a consultant once a year (or less) this is obviously essential!
There was some concern among patients in the room about safety, although to me biosimilars do seem like the logical next step in medication of RA – another audience member pointed out that there was a massive trust issue between patients and the NHS with a feeling that the NHS always went for price above effectiveness, which led to a feeling that if something was cheaper it couldn’t be as good. One person even wondered if there could be a backlash against these similar to that of GM foods a few years ago, if the press wasn’t properly educated. Janice Mooney responded that this was a key area where education was required. David Taylor pointed out that clinical trials were not enough to guarantee safety, due to rare risks, because of the small number of people involved in trials, so that safe and responsible introduction of the new drugs was also essential.
From my own persona point of view, and of course this didn’t get added into my serious report for NRAS, I’d just like to say ra ra ra, go biosimilars … especially as i might be needing them in a few years’ time!
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.