The last few weeks – mostly ‘pants’ but some great highlights!

May 3, 2015 at 12:48 pm | Posted in arthrits, Barcelona, crafting, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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It all started on Good Friday (aka the first day of passover). I had to work all day and when I got home I had a slight cough – but hey, I often have a slight cough. I thought no more of it and went of to dinner with my mum and visiting bro and SIL (aka Mr and Mrs Mooseface). A very nice dinner it was too. We got home and I felt cold … then I felt REALLY COLD! Eventually, when huddled under two duvets, wearing a dressing gown and thick bed socks and with a hot water bottle cuddled up to me, I thought ‘Hmm, I wonder if I’ve got a temperature?’ I did. it was 101.2 degrees – pretty high. The next day was a big Passover celebration with a bunch of cousins and I missed that completely! NOT HAPPY!  ‘Heck!’ I thought, ‘we’re supposed to be off to Barcelona in just over a week – I hope I’m OK for that.’ It turned into a very nasty bug with a sore throat, cold, stomach problems and aches, similar to flu.

To ‘cut stories long and short’ as a South African coach driver I once met used to say (a lot, which is why it’s stuck in my head for over 30 years!) I wasn’t – and neither was hubby, who trumped my temperature by going up to 102.2 two days before we were due to fly – by which time I had also contracted sinusitis.

We didn’t go!

(Mind you – if we’d had travel ‘fun’ like Mr and Mrs Mooseface did on their recent holiday, maybe we were better off staying at home!)

I’d been looking forward to this trip for years – literally years – since I was last there, in fact. A bit of a disappointment then (says Penguin with true British understatement). I was also off work for the whole week before our ‘holiday’ which caused some problems, as you can imagine. I was determined though that as a) I still felt pretty rotten and b) I was darned well going to have a holiday, I wasn’t going back in my ‘holiday week’ so I didn’t … which caused more problems. At least the boss couldn’t tell me off ’cause I’m self-employed.

Toward the middle of what should have been our Barcelona trip, hubby started to feel better, and my antibiotics for the sinuses began to work, so we decided on a couple of days’ holiday on the north Norfolk coast – ’cause neither of us felt up to driving very far. I found a hotel on TripAdvisor in Old Hunstanton which was really lovely and the weather couldn’t have been better – in fact weather-wise we could have been in Barcelona! The hotel was very quiet, had excellent food and a bar open all day, and was less than ten minutes walk from a rather lovely beach – just right for a pair of old convalescents! It did us both the world of good!

Unfortunately it ended all too soon (although Enormous Cat says it went on far too long*) and we had to come back home. I did manage to get some crafting done at the weekend though, before I went back to work – I nuno felted four scarves, so pretty pleased with myself there! (No photos as yet, I’m afraid!)

All this time the RA had been pretty much dormant, quiescent or however you’d like to describe it, which was generous of it given everything else that was going on!

Then back to work – oh boy was that hard after two weeks away – and we are SO busy, and stupid things kept happening, mostly my own fault – or at least the fault of the fact my work-brain was temporarily disconnected! That situation (both the business and the disconnected work-brain) hasn’t really resolved over the last couple of weeks!

I have got very into my nuno felting though and then I discovered ‘paper fabric lamination’ here at Felting and Fibre Studio. A whole new world of nuno felting potential! Unfortunately I also discovered that the RA’s back … it’s probably not even ‘flarette’ stage right now but it’s niggling away and making me tired and somewhat achy, not helped by the fact that the beautiful weather we had briefly has now gone and it’s dark and gloomy out there again!

Bee amd flower

Bee and flower – the bee is a chocolate wrapper and the flower is rag paper – note to self – don’t use rag paper again – it’s tricky to scrape off what you don’t want!

Ammonites 2

Ammonites – the Ammonite shapes were Japanese lacy paper. The colour is brusho wash. The fabric they’re felted into is cheesecloth and yellow and gold wool along with some silk strands are nuno felted into it

I have just about (with many small breaks for coffee and a sit down!) managed to make a couple of small samples with paper fabric lamination and nuno felting (see above) – and I reckon that this could easily be incorporated into scarves and other clothing and would wear just fine – even the metallic bits – see the bee in ‘bee and flower’- so that’s quite exiting. (Well it is for me – but I’m a bit odd like that!)

Felting, however, is NOT kind to RA joints! I’ve been working on ways of minimising the problems, like using a sander (noisy!) and a tumble drier (not enough control) so I’m back to just doing it in small spurts and in small pieces! These two together are only a about 10 inches across and 6 down! When I feel better I’ll try it in some silk chiffon and then maybe make a scarf or two incorporating some fabric paper laminated features.

It’s not just chronic disease – it’s just that we have to put up with it more often!

March 24, 2015 at 11:49 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me | 1 Comment
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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!


To flare or not to flare – that is the question

March 17, 2015 at 3:01 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 9 Comments
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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!

Exercise oops!

February 12, 2015 at 10:20 pm | Posted in arthrits, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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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.

The day from hell!

January 7, 2015 at 9:53 pm | Posted in Me | 2 Comments
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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!


December 12, 2014 at 12:03 pm | Posted in arthrits, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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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!

Future of Health Conference

November 23, 2014 at 7:11 pm | Posted in rheumatoid arthritis (RA) | 4 Comments

Oh boy, what a day. What a weekend in fact, but for this post I’ll concentrate on the conference itself! The key theme of the event was ‘involving people with lived experience’ aka patients and carers, in the decisions of the NHS – not something they’ve exactly been famous for in the past. When the NHS was founded in 1948, doctors was gods, nurses were dogs bodies or angels (depending on whether you were a doctor or a patient), and patients … well, so long as they did as they were told and didn’t question the gods, all would be well … wouldn’t it? Sadly 50 plus years have proved that that model doesn’t function too well, but things have been slow to change in the culture of the NHS. That’s why there’s a demand in the five-year plan for a fundamental cultural shift in the NHS – but cultural shifts are far, far, far easier said than done!

Anyway, this isn’t a history of the NHS – it’s a post about the conference – or that’s the plan. So I won’t post about the state of my knees after standing at the hotel check-in desk for half an hour the night before trying to work out why they thought I was Anya de Iongh (a.k.a. The Patient Patient) (nope) and was sharing a room (NOPE!!!) and needed a wheelchair accessible room’ (nope, hello … I’ve been standing here for half an hour … but I’ll take anything you’ve got at this point!) The answer was of course that the organisers had sent me the wrong check-in info. When Anya arrived later she was told they didn’t have a room for her at all – but they found one in the end. Another lady needed an ‘accessible’ room and didn’t have one – sorry Gillian, if you read this! Anyway, didn’t I say this post was NOT about that? Come on Polly Penguin, stick to the point.

This post is also not a whinge about the multitude of other little organisational problems that should not have occurred, except to say that Jess Weller did a fantastic job considering she was a temp called in at the last minute to sort out the involvement of people with ‘lived experience’. Hang on though – wasn’t this conference supposed to have ‘people with lived experience’* at its heart? Weren’t we told (a few times) that we were the most important people there? Really? Then why was it left to a hard-working temp to pull us all together at the last minute? Hang on – it’s not a post about that either, is it – get to the point woman, was there a conference or wasn’t there?

Well yes, there certainly was, and it went way beyond my expectations; it was fascinating, life enhancing, buzzy, positive social and fun – as well as a very informative day.  It was divided into five sessions, a morning and afternoon plenary session (everyone attends) and then a choice of four or five sessions one could attend for the other slots.

The people’s panel (as the 46 or so of us with ‘lived experience’ of long-term conditions were designated) had a room to ourselves to use before, after and in between sessions, which was inspired idea, guaranteeing us a chance to rest, relax, regroup, network and SIT. We also had tea and coffee in there and many ‘helpers’ – anyone with a blue or white sash was a helper, ready and willing to help with anything from ‘Where’s the nearest loo?’ to ‘Isn’t there any decaf coffee?’ to ‘I don’t feel so hot …’ or indeed ‘I’m freezing cold’, and they were absolutely terrific! Thank you all!

We had a briefing in there before we started, which was very helpful and useful and encouraging and stress-reducing. However, the lady doing it (Lizzy I think?) forgot to tell us that we should all sit in the front two rows in the reserved seats, and in fact only ten seats were reserved for the nearly 50 of us. Oops. Glad to say that when I mentioned this to a helper, the problem was sorted out in time for the afternoon plenary session.

For the morning plenary, Ceinwen Giles, the spokesperson for the People’s Panel, opened the meeting with a terrific and very moving intro, and then she and the aforementioned Anya de Iongh ‘interviewed’ Dr Martin McShane and Simon Stevens (Chief Exec of the NHS). Between them the two ladies charmingly, gently, wittily and diplomatically gave the two gents a right good grilling about how much (or otherwise) things had improved since last year, and how much (or otherwise) Dr McShane, NHS England’s Director for People with Long Term Conditions, had been involved with patients and carers, given that last year he had promised to meet the people’s panel in a pub for an open and honest chat … and Anya was still awaiting the meet-up a year later!

The people’s panel then gave the two men a further grilling but the comment that got most people tweeting I think, and thunderous applause, was Lynne Craven’s question. One of the themes for the day (although I didn’t attend any sessions about it) was ‘the activated patient’ in other words, trying to get patients more interested in and committed to making choices about their own care. It was acknowledged that we were all ‘activated patients’ or we wouldn’t be there. Lynne asked ‘As an activated patient, can you tell me where I can find an activated clinician?’ It brought the house down, and I have to say that the very pleasant Suffolk GP I was sitting next to (i.e. a clinician and not one of the people’s panel) was one of the first people to start applauding! Clearly he was an activated clinician – but the problem is that while everyone at the conference was ‘activated’, plenty of people in the NHS aren’t. One of the big themes was around the necessary cultural change in the NHS and social care, and indeed in the two being much more integrated. In fact Andrea Sutcliffe from the Care Quality Commission did a great talk later on in the day that covered this very thing and she had a really good post about the 5 year forward view, but it’s gone! There’s now a much briefer comment about it on their site, linking to the report, here. Thank you ‘Mrs Mooseface’ for pointing out the broken link in the original post!

I was allocated three sessions to attend – at the last minute one of the sessions had to be cancelled but that was my lucky break, as it meant I got to attend one about biosimilars!

The first session was “Personalisation: What the NHS can learn from social care”. Thanks to another one of those unavoidable last-minute changes (no criticism to anyone here, these things will happen!) I got lucky again and one of the people’s panel speakers happened to be an RA patient (and all-round good egg) Nazreen Bawa,  (who I also ended up sitting with at lunch, along with Chris Freer, MS sufferer and Centre Manager at Joseph’s Court, an MS Resource Centre). Nazreen was originally supposed to talk in a different session. She gave an impassioned talk on how hard she’d initially found accepting her diagnosis, and how little help she’d received early on in this from clinicians. A little way down the line though she’d found the strength to set up an RA support group in Cambridge, with the help of NRAS, and she’s very keen on empowering patients to manage their own care as far as is possible.

Dr Clare Corps then gave a very good talk about her dual role as patient (since a very young age, with complex long-term needs) and a medical researcher. At one point Clare was rushed into hospital and was on a ‘nil by mouth’ and had to talk the doctor into giving her IV fluids as she was ‘running on only one kidney, and that’s second hand’. The doctor agreed, (grudgingly as after all what did Clare know – she was only the patient) and that probably saved her life! This was a common theme running through the day – but there were positive stories too and Nazreen mentioned that she considers her GP a partner in her care, along with herself.

An amusing moment in this session was that I realised the man next to me was also a ‘citizen journalist’ i.e. tweeting about the conference, and, looking at the tweets I saw coming up, I thought I recognised him. He thought the same about me. He pointed to a picture of Karen Maskell’s tweet, pointed at me and looked questioning. I shook my head and pointed to the one I thought he was and he shook his head too! Twitter photos are not too helpful for ID! We told each other who we were later and he was Don Redding, working for National Voices.

I asked a question in this session but no one actually heard it properly because the microphone didn’t work … or I didn’t work it right … and I forgot to say who I was too! Doh! Can’t remember what it was now.

Then another quick break and off to the next session, on biosimilars. I’m embarassed to admit I didn’t know what a biosimilar was before the session – but I do now! This is worthy of a post of its own though, so I’ll leave it for now as this post is outrageously long! I will just say that a Nurse Practitioner from my own local hospital was speaking at this one, which was a surprise! (I’d never met her, mind you … probably a good thing as I don’t go advertising my ‘real identity’ madly to people in the local GP surgery or hospital.)

By the next session I have to admit I was flagging so my tweets lessened a bit, but I was determined to stay the course and see the wonderfully entertaining Ben Goldacre in the final plenary! The session was ‘Barriers to Service Integration: Why Aren’t We Just Doing It?’ Frustratingly I missed most of the first talk, from the people’s panel members, but there was an excellent talk from Andrea Sutcliffe of the Care Quality Commission, and Luke O’Shea, Head of Patient Participation, NHS England had a great sound bite (and very true comment): Let’s focus on what matters to people, not what’s the matter with them. In other words, if someone has complex issues around health, housing, care etc. put the focus on the things that worry them, not the things the system wants to do for them. Andrea Sutcliffe was hard-hitting, especially with this slide:

That leaves a scary amount of work to be done, doesn’t it? But at least the problems are being recognised.

Professor David Haslem, Chairman of NICE, also spoke. He astonished me by not having either two heads or very red skin and arrow-shaped tail – in fact he seemed positively human and eminently sensible. He’s only been Chairman of NICE since April – so either this is fresh hope for NICE or the poison chalice of a job will get him in the end … . Hopefully he won’t leave his post with a distinct change in complexion and tail-like appendages.

By this point I was literally shaking with cold and tiredness but still managed to enjoy Ben Goldacre’s session. Here are some tweets to sum it up. For them as don’t know, Ben is a junior doctor, accomplished journalist and author of Bad Science and Bad Pharma. The first is hilarious – the second is on my wish list but I’m sure it’s just as good! His talk was about ‘Big Data’ – or how to use data better.

As you can see – I was really losing the plot by this point, so it was a pity I then had to wait 30 mins for a taxi that never came and then stand all the way to Hampstead Heath from Olympia on a packed like sardines overground train! I did, however then have a lovely evening with my aunt Judy and her husband Cyril – delicious meal and much relaxation – just what the doctor ordered!


To sum up:

Themes of the Conference

  • Integration of health and social care
  • The ‘activated patient’
  • Cultural change in the NHS
  • Putting patients at the heart of the NHS (where you’d kind of think they’d be – it can’t run without them after all …)


  • Met some great people
  • Learnt a whole lot about biosimilars, something I knew nothing about
  • Came away feeling hopeful that at least the problems were being recognised by some
  • Know a bit more about how the NHS functions (or limps) at the moment and a whole lot more about the ‘five year forward view’


  • Although I wasn’t personally involved last year, there was a strong feeling that more could have been achieved since then for patient involvement
  • Improvements in patient involvement were strongly believed to be necessary by everyone there I think – but what about all the people that weren’t?
  • Organisation, organisation, organisation. (This doesn’t meant that I think I could have done it better – just that I think it could have been done better!)

* Sorry, I can’t use this phrase without quotes because it sounds so artificial and is in fact slightly ridiculous – what is experience, of any sort, if not lived?

We’re off to see the Wizard … or at least to Future of Health Conference 2014

November 20, 2014 at 4:15 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 1 Comment
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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. 



Optimism around RA!

November 16, 2014 at 4:25 pm | Posted in rheumatoid arthritis (RA) | 7 Comments
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This morning while Cinder-hubby washed the kitchen floor, prepared tonight’s dinner for slow-cooking, tidied up and made bread, I sat in bed and played on my iPad. No doubt hubby thought I was wasting my life away again on Forge of Empires (not that he doesn’t play too!) But no, I was researching to try to be a bit more informed when I got to the Future of Health conference on Friday. I wish I was at the American College of Rheumatology Conference right now, putting faces to all my blogging friends’ names –Wren tells us that Carla is there, from Carla’s Corner, and All Flared Up‘s endlessly entertaining Amanda, and Cathy sharing her The Life and Adventures of Catepoo, not to mention the wonderful Rheumatoid Arthritis Guy (Eduardo it turns out, not Guy … 🙂 ) plus a whole bunch of others I really should get to know. But let that not take away the fact that I’m mighty chuffed to be going to Future of Health, even if I will be Billy No-Mates there. 🙂

So, back to the research. Well what I’ve found out (or had confirmed?) about the NHS will be another post, but here’s the RA stuff I was looking at. What I found about the science of RA comes mostly from the ACR conference via twitter, but before we get into that there are two great posts I’ve come across recently on the importance of a scientific evidence base, from two great bloggers. There’s this article about why arthritis is so hard to study and cure from Kelly the RA Warrior, and then there’s Andrew the self-confessed science geek on evidence-based medicine and its importance for RA – a lovely, balanced article which clearly states what an evidence base is and doesn’t poo-poo alternatives either, but making the excellent point that what works for one individual won’t necessarily work for another, but that if there’s an evidence base to suggest it works for a large percentage that’s got to be a good thing, right? Right! So now – onto the evidence!

This is some brief thoughts on the exciting (relatively) new area of microbiomes – pretty complex stuff but a lovely, clear, optimistic summary with more to come. Take a look and then keep your ears open for more on this topic in future!

And then there’s this:

It seems there’s a bio-marker which can (hopefully) predict which patients are mostly likely to respond to biologics – so long as this is trialled properly and then, if successful, used with caution (i.e. it might not be right in 100% of cases) then that’ll be good news because those patients who are likely to respond can be treated quickly, and those who aren’t can be tried with more traditional drugs (good ol’ MTX for instance) which might control things better for them. It’s early days yet, hence all the ‘seems’ and ‘hopefully’s, but potentially good news.

OK, yes, slightly less encouraging in seeing that one’s disease is related to particular cancers, but the encouraging bit is that TNFi biologics have not been shown to be associated with increased risk in that area.

So there we are, that’s the good news about something that rarely has anything good about it. For my next post*, the mixed news about the dear ol’ NHS.


* I hope I haven’t doomed that post. Every time I say ‘I will write a post about …’ on this blog, somethign happens and it doesn’t get written!

I’m going to be a ‘Citizen Journalist’ at Future of Health 2014!

October 29, 2014 at 10:11 am | Posted in rheumatoid arthritis (RA) | 5 Comments

That’s my exciting news – so please follow me on Twitter: @Pollannpenguin – note the spelling – Pollyann not Pollyanna! What is a ‘citizen journalist?’ I hear you cry. Well, I’m not entirely sure yet and I’m not entirely sure that the Future of Health organisers are entirely sure either, but I think I can sum it up quite safely as ‘official twitterer’, or perhaps ‘official tweeter’ if you prefer. I like official twitterer better – I think it has a nice ring to it.

Now your next question, or perhaps actually your first question, is probably ‘What is Future of Health 2014’? It’s a biiiiiiiiiiiiiiiiiiiiiiiiiiig conference, held in Olympia, London, run by NHS England and University College London, with various other partners and sponsors of course, and the theme this year is all about getting above the rhetoric and the finances to try to look at person-centered healthcare – treating the patient as an individual etc. Well, if you’ve been reading this blog for any length of time you’ll know that’s something I’m ‘passionate’ about. (Although I hate the use of the word passionate in that sense, I think it’s justified here!)

How many posts have I got on here complaining about not being treated as an individual? Where do I start? Well, there was the time (actually times) my consultant pointed out, not for the first time, that I was ‘better off than most people I see in here.’ Then there were all time times the junior nurse ‘processing’ us prior to appointments made us feel like ducklings, or perhaps more like Turkeys at Christmas. There are lots of posts like this, but then that post ended fairly positively, and so did some others, like this one where I thought I’d fallen down Alice’s rabbit hole into NHS Wonderland. So, why can’t it always be like that? Well, lack of resources, long hours for nurses etc. And of course the NHS is broke.

So, I’m really looking forward to seeing if Future of Health 2014 can get beyond the rhetoric and beyond the finances and into the heads of people who say ‘Oh, I see worse than you all the time’ or show a complete lack of interest in their patients, or can’t be bothered to read the notes, or employ people who can’t actually speak or understand English well enough to help, and actually change things. I can’t wait!

Oh, and as an added bonus Ben Goldacre of Bad Science fame is talking, so that should be good too!

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