Our questions and the doctor's dilemma



I wondered if anyone else had read these articles in today's Guardian. We maybe aren't talking about life and death with our various medications - but there are parallels.

If only we had enough time to discuss it all properly with our doctors - and that they would treat us as equals. Because equals we are in terms of what happens to our lives.

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  • Food for thought. Thank you. Xx

  • Thank you for sharing these articles. Very little is done to enable student doctors to develop these vital skills. The profession seems in total thrall to the pharmaceutical companies. There is a huge push to save life often at the cost of any kind of quality. Mind you when my mother developed deep vein thrombosis when she had late stage dementia a hospital doctor told me bluntly that they wouldn't operate, expecting a big fight, which she didn't get. I gave my mother a homeopathic remedy ( I trained in this in the 80's). The DVT cleared up and she lived for several more years. An elderly person, even with good mental capacity, would have found that operation gruelling. By then all I wanted for mum was an easy death, which she got surrounded by people who loved her, not a tube or machine in sight.

  • Yes, my MIL was dying in hospital (the little cottage one in the next town) and I was a bit surprised they hadn't got a drip up as she was drinking very little - even when she had a cup in front of her she seemed not to know what to do with it. It was probably cerebral secondaries to BC we thought. The sister asked did I want her to have one - oh no, I said, I was just surprised as she'd have had one in the big hospital! They were fantastic - and the sister rang me on the Monday morning before she died, I asked how long she thought it would be, 72 hours she said. And punctually, early on the Thursday morning when they went to wash her and tidy the bed, she died. They were superb at end-of-life care. David had cancer at the time, I couldn't possibly have looked after her at home, that was why she was there but it was the next best thing.

  • That sounds perfect. X

  • πŸ‘πŸ‘πŸ‘πŸ‘Many thanks for these links: Big Important matters that concern everyone Big Time. I agree: if only we could discuss this as equals with medics

    Until v recently, I'd NEVER had a conversation with anyone medical about this sort of thing...then, quite suddenly, it happened (a USA school friend & her paediatric oncologist husband came to stay for the first time in 20years...he'd just stopped doctoring & gone to work for the FDA....I was about to start mycophenolate and was feeling anxious. We talked a bit. Candidly. It felt AMAZING).

    In an effort to learn something haha about what goes on in medics' heads, I've been reading medical professionals' memoirs & articles + watching medical documentaries & medical series for years. But informal dialogue with a (former) medic was awesome ...although I did feel awkward re the "Busman's Holiday' thing.

    They came to stay again last summer...he initiated conversation on these subjects voluntarily...and when he departed: he urged me to email him any time to continue our chat + ask about anything on my mind re my health/treatment. I nearly fell over. I felt as if some part of him had been as hungry to connect with patients in this way as I had been longing to connect with medics.

    Some day I must ask him about this. But now I v much feel it's almost impossible for medical professionals to open up this way on a personal level: their "conditioning" (training etc) & professional status cramp their style too much. Same goes for lawyers, paralegals etc

    Thank goodness a few highly informed & involved members of the medical community like you are here looking at all this with us...you mean a Great Deal to us...for one thing, you make my life of constantly negotiating with medical professionals feel less like "them & us".

    I'd urge anyone interested in this to read anything by the surgeon Atul Gawande...especially "Being Mortal". He's a doctor who tells it like it is...& "practices what he speaks"


  • That's the guy who wrote "Complications: A surgeon's notes" - really liked it and laughed out loud!! Must look for that...

  • 😊 Yes: that's brilliant! He's mentioned in your first article. He's American, but works in other countries. Writes for the New Yorker too....this a link Is to his most recent article:


  • Do tell me when there are good things in the New Yorker - I've enjoyed the ones you've mentioned so far!

    I think this one was the long read in the Guardian recently???? I've seen it somewhere...

  • πŸ‘πŸ‘πŸ‘πŸ‘

  • I read another Atul Gawande book recently, "Better". His writing is wonderful, thought provoking and it rings true, as well. There's a piece in Vox from a couple of days ago by Atul Gawande:


    A question: What does PMRGCAuk stand for? My friend (nearly 70 yrs old) has arthritis and has just been told she has PMR. I wanted to recommend a specific community on this website but that's the only likely one and there aren't many recent posts. Maybe I'll suggest this one; it is welcoming to newbies and very active and up to date.

  • πŸ‘‹πŸ‘‹πŸ‘‹πŸ‘‹I think Better is wonderful. Means A LOT to know you think it is too!

    Your vox link is BRILLIANT: thanks! The future looks vvvv complicated....

    Not sure if you're reply is to me or PMRpro: am sure she knows all the PMR organisatins...so, if she doesn't respond to your comment: do message her direct

  • Yes, coco, terribly complicated and terrible in equal measures. And hurtling towards the UK, too. Do you read MD in Private Eye? His column in the most recent magazine, as ever, is as accurate as ever and as chilling.

    And see PMRpro's very helpful response, below.

  • I must read PE's MD now....will subscribe pronto! Many thanks 😊

  • What's the issue date of the MD PE article? I've just subscribed & will see if somehow I can access back issues...πŸ€

  • Polymyalgia Rheumatica and Giant Cell Arteritis, related autoimmune vasculitides.

    I can't imagine what makes you think there aren't many recent posts - I read about 40+ every day! And answer a lot of them.

    There are 3 forums for PMR and GCA in the UK:


    pmrandgca.myfunforum.org/in... which is associated with the NE of England charity pmr-gca-northeast.org.uk


    They are all different in character, the middle one is fairly quiet as it had server problems some months ago and is still building up again as many former member got lost and were on the other forums anyway. There is a lot of information on the NE charity website - and they have membership packs with a booklet and other info.

  • Hi, PMRpro.

    Thanks for this, very helpful and exactly what I was hoping for.

    I put PMR into "Search Lupus UK" (top right above) and chose PMRGCAuk. That's what made me conclude the forum wasn't very active! Very odd because of course, when I clicked on the link you posted, up came the extremely busy PMRGCAuk forum. I will send the links to my friend.

  • I read Being Mortal and I second your recommendation. It deals with concepts that we know of but darent think about. Excellent book.

  • YAY πŸ‘πŸ‘πŸ‘πŸ‘

    This book has made a big dif too me - especially re how I view the care system and anyone I'm involved with who is in it....especially terminal cases

    I wonder if reading it has made a diff to you re how you view your own mortality? It's certainly helped me view mine more "philosophically"....and it's made me start talking to my significant others about the choices facing each of us as we age, become more decrepit etc...

  • Too close for comfort for me to read presently - bring married to a man who works in a care home for the elderly I get to discuss a lot of these issues with him from a very realistic perspective indeed!

  • Yes. Am v much relating to that...I put off reading Being Mortal for similar reasons...after listening to his interviews & reading reviews, I didn't let myself read it for months after it came out πŸ˜•

    The subject touches most of us closely one way or another... eg I have 2 close friends working in res care & have been learning from them (1 I see every week: OMG, the stories 😣) ...and several close relatives living that life now, plenty already have been there, done that, passed on πŸ•Š...

    Being a Mortal surprised & relieved me me in that he writes in detail at length about places & proper who get res care right


  • I think I've never viewed us anything other than being VERY mortal. Must be something to do with living with/working in the NHS and being only to aware that we cannot heal everything.

    I've recently been a bit worried about me - because i don't react to a family death like most people do. I don't think it is strange but I'm sure others would.

  • I sure do relate to that! And I think he does too

    It's single mindedly applying extreme measures to prolonging life that gets some of us reacting

    Anyone who has cared for pets or farm animals, fish, fowl or gardened with a compost bin has learned lessons about respecting/accepting mortality

  • I learnt from my best friend up here, when she lost her only child to death by misadventure at 19 (a science experiment that went very badly wrong), that there is no right way to react to death.

    All my people have died suddenly and unexpectedly so I've had no time to prepare myself. My own feeling therefore, is that we should try to treat all those we care about as if this day/ hour/minute together might just be the last.

    But I have never reacted to death of loved ones in the conventional way -and anyhow it's not something that we can plan for and nor is there be a set protocol for grieving.

    My husband always jokes about me being a hard hearted woman because I didn't cry when our old cat was put down - he where he and the boys all sobbed. But it's not my way as I learnt young. It doesn't mean I don't feel something breaking within though. My RA symptoms started a year after losing my mum and 7 years after losing my dad. I'm sure there was a connection.

    On the whole I think I've been fortunate to have parents and grandparents who were there one minute and gone the next - rather than prolonged illness involving suffering and pain or memory loss. But I don't like it when people tell me I've been lucky because sudden death brings its own trauma. However I will usually volunteeer this idea myself when I see friends travelling hundreds of miles, addled with worry abs dread about their ageing parents.

    Death is often liberating for the survivor as well as very sad - the embodiment of a mixed blessing. Unless it's a child or a murder or a particularly painful or awful death of course.

    But tending to someone when they are dying is a privilege when it is peaceful and timely, so my husband tells me. I haven't had any experienced this myself though.X

  • I can't claim to have tended anyone - my MIL was admitted to the cottage hospital as David had cancer and was having chemo at the time and the girls were 10 and 13. I was crackers enough, that would have been the final straw! But it was a relatively quick and gentle death - what more can you ask for?

  • Nothing really but it must have been terribly hard for you and David nonetheless. X

  • We always say it was an INTERESTING year!

  • I found it refreshing because since becoming ill I'm constantly thinking of a future when either my husband or I are unable to take care of ourselves.

    Most people can't face talking about this, though, I'm told I'm morbid. But I feel so much better to have things organised properly.

    The care decisions talked about in the book were of particular notice - I didn't think before that everything is regimented and that once you get into the system that's it, you're abiding other people's rules: when to wake up, when and what to eat, what to wear, how to have your hair styled. And so on. Frightening.

  • When people tell you you are being morbid, it is probably because they have thought about it - and are scared so they turn into ostriches.

    There are only 2 certain things in life: death and taxes ...

  • D'Oh! I've just looked on line and there is a Vasculitis Foundation (USA, Kansas City based) that includes PMR. There isn't a forum though, so my advice to my friend will stand. And GCA stands for Giant Cell Arteritis-of course!

  • All 3 forums have members from all over the world, quite a lot from the USA. There were forums there 10 years ago but they folded and although we have tried to get one going in the US everyone sticks to us because our forums are so active and have long-established members with the expertise.

  • Coming rather late to this. Thanks for this post and the two links Pro. Both make very interesting reading and raise fascinating age-old dilemmas which seemingly grow and change along with an ever changing world.

    At the end of the day, each of us will apply the ideas that emerge from these articles to ourselves and our families and friends in order to test them with our own realities.

    So with that in mind I found myself thinking of a brief, sympathetic exchange I had with my new GP a few weeks ago.

    This arose from the copy of a letter I had written to young rheumy registrar in response to his one to me. She wanted to know the outcome so I described the ensuing phone call. She commented that the increase in specialisms has led to people not being treated as whole beings and being left to join up all the dots themselves as I had done. This, she feels, is becoming the only way to get any kind of multidisciplinary approach to kick in. She cited an example that applies specifically to her practice - located between two health boards (health authorities in England). This situation clearly upsets her and her colleagues because of the impact it has on their patients.

    We didn't talk about the role of the GP in all this of course, but we agreed that these were increasingly difficult and uncertain times for all. For most people with chronic conditions, GPs have to help them join up the dots and this must be taking up an increasingly high percentage of their work load. Dealing with one organ in isolation to the rest of the body and the mind is very limiting we both agreed - with a multisystem disease it can be nonsensical. I told her that I felt this was especially so for people with rare diseases, because of the lack of support mechanisms, and the fact that research and drug trials inevitably are few and far between in such straightened times - she sadly agreed.

    Yesterday I read a post on a different HU forum - of someone who had been diagnosed with a rare CTD and given two powerful medications - without any information about these or how to access information and education on what this disease actually is or how it is managed. I know rheumatologists are usually extremely overworked - but still - not to take the trouble to at least hand out a leaflet for the charity that supports and informs about a rare disease - seems incredibly remiss. I wonder if this is because many doctors now expect patients to have done their own online research and be proactive in locating support networks such as this one for themselves. Not taking enough trouble with newly diagnosed patients will only result in more headache and heartache for all I feel. So I'm not certain that all the extra training in person centred care is actually getting through at all levels.

    There is another writer, an Edinburgh GP, called Gavin Francis, who's writing I've enjoyed a lot eg "Adventures in Human Being – a fascinating journey around the body"

    He did his GP training with my GP up here and I went to his book signing talk a few years ago. He spoke of his career path and how he had come to being a GP after years of travelling and being a neuro surgeon and other areas of doctoring including gaenacology and obstetrics. Ultimately he found working within the specialisms too frustrating. A good guy.

    I know that many GPs are now only able to cope with working 3 day weeks because of the pressures they are under and expectations they are faced with day in day out. Maybe we need many more GPs like Gavin Francis who have two careers - one reflective and the other practical?

    The days of paternalistic Dr Findlay are very long gone and it's high time to find a modern day approach to doctoring that prevents burn out, total compassion fatigue, potentially fatal errors in judgement - borne of too little time for each person and too many bureaucratic anomalies or layers, alongside financial constraints.

  • Do you know what I like best about this LupusUK forum? Despite complaints of brain fog there are such deep and wide-ranging discussions that happen here!

    "The days of paternalistic Dr Findlay are very long gone" - I'm not so sure judging by some of the stories I'm told by PMR/GCA patients. Especially in the USA.

    Gavin Francis sounds my sort of doctor...

  • Yes mine too. But do you know what - my good friend who has Addison's and presumed primary Sjogrens actually prefers the Dr Findlay types? She likes her doctors to be autocratic and prefers to leave her health and management entirely in their hands. She gets furious when they make errors though - they should know everything and ethics shouldn't come into things - that's what they trained for and she doesn't want to learn about her disease. She and I are completely the opposite in approach and expectations. However I suspect many more people are like her than like us. Look at the success of tv's Doc Martin?!

    Ps and of course, out of paternalism/ Dr God come the Harold Shipmans of this world.

  • Quite - I find it scary that people do things unquestioningly even when it makes them feel worse!

    I wonder if our backgrounds make a difference? I went to uni with medics, I went to a medical school both times. They aren't any different to us - and a lot are less critical in their thinking. Since they started going just by high A-level results they aren't getting as many passionate people people getting in, just a lot of very CLEVER people who often have very blinkered views.

  • Very scary - my son's generation - I've read to them at playgroup and changed their nappies and driven them home after drunken shenanigans! Not thinkers outside the box despite their academic achievements at school.

  • And yes I think our backgrounds, experiences and genes make all the difference to how we approach our own health and state of global health and role of Big Pharma generally.

    I'm sure many would think that our being on this forum a lot and questioning everything we are told as we do, makes us health obsessives. But as an artist and a daughter and granddaughter of lawyers and social reformers - my training and background has been to question anything and everything.

    For example when my two younger, born deaf sisters were children the oralist educationalists told my parents that sign language would only ever hinder their progress in a predominantly hearing world. Yet they both earn far more than me (not hard!) and are very valuable and valued members of society and are completely fluent (one is the most senior level BSL teacher) in British Sign Language.

    Life has taught me the hard way that very little in art or science or even the news is a given. Even history is potentially very subjective and there are usually at least two sides to everything including medicine. Very very little in life is black and white. I still haven't grasped reason for the furore about fake news, having always treated news, as it's given out, with some scepticism?!

    And after my experiences with Gabapentin and Duloxetine, I would totally concur with your article no.2, that many doctors are not making good decisions about which medications are generally safe or balancing the risks correctly with the benefits. And even good doctors will make bad decisions - it's called being fallible!

  • I've just come across this fascinating thread. I'm with many of you on some medics being so focussed on "their bit" of our anatomy, whatever their views might be off duty. I've also got a mental list of many student doctors I met over the years and dearly hope not to encounter (though to be fair, one may change). The focus on tremendously high achievers, and giving them so little time to consider, reflect, or even discuss outside the grades/exams is very misguided.

    Thank you for the heavy reading!

    I have caught the eye of a medic and asked outright what they would do if I were a close relative. Hard to do if they are patting you on the head and holding the door open. Very possibly even harder for them to answer.

    Most of my "inside" experience, apart from family or friends, was when working (I'm not a medic). A couple of links to regular GP mags are here (afraid we called them the GP "comics") An interesting mix of education, money-handling and political views are contained. Lots of ads for new medications too. If you have the time and wish, they can be worth a look



    As to end of life decisions, my sons are very matter of fact about knowing what I would want and prefer, when the time comes. Personal experience of the end of life of a number of family and friends makes me want to be blooming sure that, together, they do exactly as I made clear and where it is legally stated, and can brush off any other's opinions.

    I had a horrific time when I made clear that my mother, who had advanced dementia and was simply withering away had always believed that when one's time came, others need to let you go as peacefully and comfortably as possible. The doctors were in complete agreement, but my elderly uncle phoned the hospital every day and told all and sundry I was "murdering" her. He was in the North West of Scotland and a colleague at work pointed out the hospital chaplain could speak to his priest. That helped a great deal, but I still got the death glares from him at the funeral. My mum would have slapped him.

    Sorry to go on, but this is a fascinating thread which has got me thinking deeply.

  • I have an uncle like that too. Within 24 hours of phoning me to break the news of my mum's untimely death he was making moves on one of her paintings that he had coveted and bullied her over for decades. He kept saying "charity starts at home"?!! X

  • Every family has its share of scunners!

  • Mine had more than its share...

  • Oh gosh yes - hate those sort of "journals"...

    And with you all the way - I'm sure the family would think much the same about me. But mercifully, most of them died first.

    Just had a SIL funeral - and her daughter is absolutely in pieces. I've just told mine I will haunt them if they react like that! It was expected - she had pancreatic ca but went very suddenly and unexpectedly before it got to the nasty stage. She had played bridge (and won) in the morning and was in hospital with an "acute abdomen" in the evening, lapsed suddenly into a coma and never woke up. Under the circumstances - wonderful.

    My mother had cardiac failure, stopped taking her medication and eventually fell asleep, basically as a result of pulmonary oedema. The neighbour had called OOH, the doctor saw what was happening and called an ambo but not as an emergency, just a transfer. They arrived just after she died, falling forwards into the arms of the OOH doctor who was kneeling in front of her and he laid her on the floor. No heroic efforts involving broken ribs - just a peaceful and gentle death. At 79. What more could you wish?

  • I used to have a great consultant who did treat me as an equal. Yesterday I saw his replacement. A young woman who was really snide when I asked if it might be beneficial in getting my current flare under control to have a month of work. She just assumed I must be workshy ....wanting to skive. I actually want to get better as fast as possible and I am afraid of this flare getting out of hand...rest is meant to help ...right? .....and my GP thinks I drive myself too much. I had reluctantly come to the conclusion....Well almost come to the conclusion....that I would rather take a month off now ....If it worked.....than go under altogether later. So I asked her opinion. What a mistake! I am so offended by her judgemental and complacent attitude. If she had any idea what it is like to live and work with lupus she might have taken a different tack. I sympathise with all of you guys out there dealing with people who are incapable of listening never mind understanding. There is so much more to being a doctor than a misplaced sense of superiority. I have had lupus for thirty years now and have been lucky and determined enough to build a successful career when my husband would have been happy for me not to work at all. Who do these people think they are making their prejudiced assumptions. It's enough to make you scream!!!

  • Oh this reminded me so much of my first rheumy - although he's a decent man compared to others including the one you describe - but so old fashioned and paternalistic.

    He had come across me at an Arthritus Care event a few months earlier and I introduced him to my attending MSP - who also happens to be a friend of mine. I was doing really well on MTX injections and Hydroxy at the time - although I would have attended anyway in my capacity as an ambassador for a related charity.

    So next time he saw me as a patient I was poorly again having had to stop both drugs after allergic reactions. I asked if it was time to consider anti-TNF or biological drugs perhaps? He then said in his letter to my GP that he wondered if I was coming off these DMARDs in order to meet the criteria for the very expensive drugs?! Then he said "she claims to be suffering from fatigue but I have been seeing her functioning well in public contexts - I do hope she is enjoying this work?"?! Boy I was so mad that my GP refused to give me copies of his letters for a while after that?! But he was cross for me too because he'd seen anaphylaxis and crippling nausea and fatigue for himself.

  • driven - I probably would have! And been thrown out...

    And TT - what makes them think we aren't standing there at this "public event" wishing we could crawl under the table and sleep???? If we don't do the advocacy - they bΒ£**%" well are unlikely to!

  • Yep the thing is it's lose lose situation because if we make an effort or happen to look well or have dogged determination to keep going then it counts against us. But if we look and feel rubbish simultaneously then they think we aren't making the right lifestyle choices or they drug us to the gunnels and just hope like hell it doesn't kill us!

    Last time I saw my old rheumy he knew I'd had lumbar puncture, pneumonia, Pancreatitis and Sepsis (was still getting wound dressings done daily), all within 6 months and was on my way to see neuro for urgent carotid duplex He gave me a guided tour of new rheum facility and kept looking at me amazed - especially my hands which were pulling along a small case and sporting an arty cane! When we parted he said he admired my fighting spirit and wished me best of luck ha ha! X

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