Tags: Creaky Joints, EULAR, NRAS, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
Last year I attended the Future of Health 2014 Conference, having applied to be a ‘citizen journalist’ and tweet about the event. There was a big focus there on listening to the patient, and that’s certainly not an isolated event. The excellent Creaky Joints report on the EULAR conference makes it clear that this is a much bigger thing. The thing that especially caught my eye was that FINALLY we’re being listened to regarding fatigue. Fatigue is not correlated to disease activity, a study by the UK’s National Rheumatoid Arthritis Society, which I participated in by answering a survey, found; in other words, I can have mild, controlled RA and still be bloomin’ … erm … exhausted the whole time! There’s a good chance that if you’re reading this blog you’re an RA sufferer, and if you are there’s a very good chance you already knew this, but I’m quite sure most of the medical profession did not – and does not, and it is through listening to patients (or patient-led societies) that they are finding out.
Combine this European-wide event with all the patient activity at the American College of Rheumatology event last year, and the fact that even in my little provincial hospital the consultant was genuinely wanting my opinion on things last time I saw him, and I really do feel there’s something positive going on.
I know it won’t be perfect, I know there are still plenty of medics out there who don’t understand RA at all, and even the specialists will often think what’s on their charts is more important than how we feel, but it certainly seems to be a move in the right direction.
The NRAS survey highlighted in the Creaky Joints report indicated that 66% of patients surveyed (in the UK) were never asked about their fatigue and 79% said it had never been measured. At the moment though, there is no generally accepted measurement of fatigue, so any fatigue studies are a bit hard to take seriously. The next stage should probably be to agree a way of measuring fatigue so that studies can be sensibly compared and conclusions reached.
And now NRAS has another survey – this one is all about how much input or influence RA patients have in their treatment decisions, so if you’re based in the UK and have been diagnosed in the last ten years, go ahead and fill it in; your views could form part of the next EULAR conference; who knows!
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!
Well, I thought I’d cracked the blood test issue – how not to have to wait an hour or so – turn up just before they take the ticket board down at 11am, grab a ticket and wait, hopefully, no more than ten minutes or so. It’s worked the last couple of times …
So I went in at about quarter to eleven and … no ticket board on the wall! Lots and LOTS of people in the waiting room, but no ticket board … o’oh …
So I queued up at reception and said explained that I’d come for a blood test and that I’d understood the ticket board stayed up until 11, and where, pray, were the tickets? It transpired that normally they had two phlebotomists on but today they only had the one, and there was such a long wait they’d taken the board away early as she had to start another clinic at 11! ‘Can you come back tomorrow?’ I said I supposed I’d have to but it was rather awkward as I WORKED, and then I said, ‘But will she be on her own again tomorrow?’
‘Can’t you just come in earlier?’ asked the receptionist. I said that while I could, that would no doubt mean waiting an hour or so, at it had in the past, and since I WORKED I wasn’t willing to do that. ‘When will she have someone else working with her again?’ Blank, fish-eyed stare from receptionist – who has no doubt been cultivating her black, fish-eyed stares ever since she started as a guard-dog – sorry, I mean doctor’s receptionist.
‘Will the other phlebotomist be in tomorrow?’
Blank, fish-eyed stare.
Deep breath. ‘If I come in tomorrow, is it going to be the same situation … ah, or don’t you know? Is the other phlebotomist off sick and you don’t know when she’s coming back?’
‘Oh no – it’s half term – she’s on holiday. She’ll be back on Monday.’
Very deep breath – ‘Why, thank you! That’s what I wanted to know. In that case I’ll come back next week.’
So off I went. I will NOT go back Monday as Mondays are always manic, but I will try Tuesday. I hope I can get a blood test because my repeat prescription is due on Wednesday and if I haven’t had the blood test they won’t give me the prescription! Watch this space.
Tags: aches, Amoxicillin, doctor, methotrexate, MTX, NHS, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
Well, the last few weeks have certainly been interesting … in the Chinese curse kind of a way, although there have been some great highlights including a couple of painting classes and a textile workshop. Mainly though, things have been rather dominated by toothache … and irritation!
I had a niggley toothache, not bad, just on and off, but with a lot of sensitivity to hot and cold as well, so eventually I bit the bullet (ouch) and went to the dentist – who ummed and erred a bit and said that hopefully it just needed a bit of filing down, but if it didn’t it ‘could be nasty’. Not the words you want to hear from a dentist really. He said if the filing down didn’t work, to come back the next day … it didn’t; I did.
Now bear in mind we’re extremely busy at work at the moment and the dentist is in a village up the road and it takes around 20 mins to get there from work. So a visit takes at least an hour all told – and I had to do two in two days – frustrating! On the second visit he did the briefest of examinations and said, ‘Reckon it’s an abscess – have some antibiotics’ … so I did … but I was cursing because I thought, ‘Why didn’t he just give them to me yesterday, and save me an hour?!’
I got back to work, opened the packet of Amoxicillin, glanced at the leaflet inside and it said, ‘If you’re taking any of these medications, talk to your doctor first’ and one of them was methotrexate!
Muttering under my breath I picked up the phone and phoned the dentist – and had to waste more time trying, and failing, to explain what the problem was to the receptionist. Understandably the dentist wasn’t available immediately – no doubt he had his hands in someone’s mouth – so I waited for him to call back … and waited … and waited …
I knew there was absolutely no chance of getting hold of a doctor that day and, as the tooth was getting worse, I didn’t want to wait until the next day and then I had a brainwave … or perhaps a brain storm (in the old-fashioned sense!) I thought, ‘Hang on – isn’t that 111 number supposed to be the NHS non-emergency number – they can answer queries, I’ll ask them.’ I took a brief look at the website and it said ‘111 is the NHS non-emergency number. It’s fast, easy and free.’ Sounds good, I thought, so I rang it. It was answered very quickly and as I was talking to the pleasant lady who answered I noticed on the same page as ‘non-emergency number’ it said, ‘You should use the NHS 111 service if you urgently need medical help or advice but it’s not a life-threatening situation.’ I felt a bit embarrassed because clearly it wasn’t that urgent, and even more embarrassed when I explained the issue and she said, ‘What symptoms are you having?’ And I said, ‘None – I haven’t even started taking it yet!’ She was lovely though and put me through to ‘a clinician’.
Now I’d done a bit of a checking up on the internet first and the issue is that Amoxicillin can cause the methotrexate not to be properly excreted from the body, resulting in a potential build-up of toxins from the methotrexate. I could find no indication of a) how much MTX you’d need to be on to have a problem b) how much Amoxicillin you might need to have a problem or long you’d have to be on it for or c) How long the effects might last, since I’d had Amoxicillin only about 3 weeks ago for the sinus infection that was part of the reason we failed to get to Barcelona!
The clinician came on the phone. He clearly had not the foggiest idea why it would matter that I was taking MTX and Amoxicillin, so I briefly explained as above. ‘Well,’ he said, ‘you seem to know the answer then.’ Helpful … not! So I pointed out that no, I didn’t know the answer, since the question was having been prescribed it, should I or shouldn’t I take it? What was the level of risk? And so on …
‘Oh … er … um … well’ he said … and so on for a while … ‘I think I wouldn’t risk it really. You need to talk to your dentist.’ I explained I was trying to do that and would continue to do so! I felt very strongly that he really didn’t have the foggiest notion and was just covering his back, as if he had said, ‘Oh I think it’s fine’ and then I died of toxic MTX build-up, that could have been his career down the tubes … and I suspect it was a career that had barely got off the ground so far anyway.
So I called the dentist back – receptionist again – and to look like I wasn’t nagging I said I had a bit more information that I’d previously forgotten to mention (which was true) and explained that I’d also had Amoxicillin in April and wasn’t sure if it stayed in the system. Given that Mr Dentist phoned me back almost immediately this time, I can’t help wondering if she’d completely forgotten to pass on the message the previous time.
‘Oh,’ said Mr Dentist, ‘I’ve got some different information from you … as I understand it, the Amoxicillin can cause a build-up of methotrexate in the system.’ I said yes, that was the information I had too and he said that that wasn’t the message he’d been given from the receptionist. I bit my tongue, swallowed down the sarcy comment on the tip of it and said sweetly, ‘Oh dear – I obviously didn’t explain it very well then,’ which in fairness was probably true!
‘Well,’ he said, ‘You’re a sensible sort of girl. I’m sure you can monitor things and if there’s any problem, see your GP.’ I pointed out that I had no idea what sort of problems this toxicity build-up might cause. ‘Hmm, neither have I,’ said he, ‘you’d have to ask a doctor!’
So – I’ve now lost count of how much time I’ve wasted and really I don’t feel any nearer to knowing if I should be taking the damn stuff or not – but he had looked it up on the drug interactions database and said it didn’t appear to be a major problem, so I started to take it anyway.
The next day I decided that perhaps I should ask the doctor – after all, it’s only a phone-call. With the new surgery system you have to have a phone call first from the doctor and then they see you if they feel they need to, and I was sure they wouldn’t need to for a simple question.
Unfortunately I forgot to call until about 10 am so most of the appointments had gone. I explained the situation to the receptionist and said was there any chance of a call back and she said she’d have to ask someone. Now he was either new or a locum, not sure which, and for reasons best known to himself he decided he’d see me! Aaaaaaaaaaaaaargh, more time wasted!
So I went for my appointment and the first thing the pompous little man said was, ‘I don’t really believe in prescribing antibiotics anyway, but as you’ve been prescribed them … I mean normally the body can manage to heal itself without them. Of course there are some circumstances where one might have to, but it’s quite rare …’
I replied, ‘On the one hand, tooth abscess, notoriously difficult to get rid of; on the other hand, immunosuppressed; don’t you think this might be one of those rare situations?’
He looked quite shocked to have his little lecture so rudely interrupted and, pomposity temporarily punctured, he replied, ‘Oh …er … well … probably in this instance, yes.’
So … back to square one – do I or don’t I take the dratted antibiotics? And the answer was … YES! Take them. I have to say though that even the doctor didn’t seem absolutely 100% sure! He did check the database again and he did say, ‘It’s not even a red warning’ and I had seen on the internet that the evidence for this toxic build-up was quite slight and I, I think, not in humans, so I was somewhat reassured in the end.
I’m glad to say that the tooth does seem to be clearing up, and I’ve not yet keeled over from any toxic build-up!
Hubby did point out afterwards that I could have probably saved a lot of time and effort by asking the pharmacist – wish I’d thought of that! Must try and remember for next time. Another sensible option might have been to ring the hospital rheumatology helpline – but I haven’t used it since my very poor experiences years and years ago and I don’t actually know the number anymore. Next hospital visit, I must get it!
Of course, all this makes it all the more important to go for my monthly methotrexate blood test … and therein (of course) lies another tale … for a later post!
Tags: aches, arthritis, Barcelona, crafting, felting, Hunstanton, nuno felting, paper fabric lamination, RA, rhematoid arthritis, rheumatoid arthritis (RA)
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!
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.
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: 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!
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?