A pilgrim marches on
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Talk The Green Dragon
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3-pilgrim-
This weekend I finished watching Moonfleet - the 2014 version. I don't know why I keep doing this to myself. Moonfleet was a major book of my childhood, and getting it massacred by people who don't understand the simplest things about the period in which it was set.
Despite a sterling performance by Ray Winstone as Elzivir Block, a rather excellent one byBen Chaplin as Squire Mohune/Maskew, and a surprising fidelity to the plot of the novel, this was basically costume fantasy.
For a start, making John - who is in his early teens for most of the book - into a young man, completely changes the dynamics of all the relationships in the story. Yes, being an orphan, he is left to make his own way at fourteen, but this is the eighteenth century. He is a worker, not a schoolboy, at fifteen, just like my grandparents were in the early twentieth century. That doesn't mean he is an adult. His devotion to Elzivir Block, a man of very ambiguous morality, is that of a boy who lacks a father, and his obsessive loyalty to Grace (who he barely knows) is a teenage first crush.
Conflating the Maskew family with the Mohunes is an obvious simplification for a film to make. But it takes away the malign nature of the Mohune legacy. In the book, middle class Grace Maskew, and even her hard-hearted father, are just as much victims of the Mohune influence. He is not rich enough to look after the manor properly or mingle in "society" amongst people of his own class; he is stuck in an isolated village, surrounded only by people whom he despised, and who despise him back. The Maskews are richer, but probably no happier than John.
The fabled Mohune treasure, fabulous wealth obtained as the prize of betrayal, is an ambiguous blessing. No one benefits. Replacing the sense of I'll fortune following I'll deeds with the cackling ghost in the uniform of a Parliamentary trooper was awful,and without that, Aldobrand"s actions at the denouement are an unbelievable Deus ex machina .
It is the portrayal of Grace in the film that angered me most. The idea of a young, single woman having legal agency was preposterous.
There is a fashion for revising the portrayal of wonen in the past, to give them more agency. This insults the real women, who had to live and function under appalling limitations.
And from a dramatic point of view, giving Grace more independence does damage to her character. She is passive in the book, because she has few options. She cares about how much money John has, not because she is inherently venal, but because who she marries will not be her choice; they will need money to either impress whoever her legal guardian is attached that time, or to run away on. John is fixated acquiring wealth, because she makes it clear that he needs it on order to marry her, and he makes appalling decisions as a result.
John is basically a good lad. But his desperate need to acquire money leads to bad actions. Unless Grace is portrayed as a real, circumscribed 18th century girl, then her demand that her suitor is not poor comes across as vapid and shallow.
Other subtle changes, reducing the brutality level of the story, weaken it. John is a young man at the start of the film, and a young man at the end of itinstead of spending his "prime" (ten years from 15 to 25) rotting in Ymeguen prison. The link between the Ymeguen brand and the coat of arms of the Mohunes is omitted
But worst of all is the change in the ending. To deny Elzivir his great, heroic moment is a travesty.
This essay is an enjoyable comparison of the book to the Fritz Lang film.: https://www.academia.edu/35540761/Comparative_study_Moonfleet_by_John_Meadle_Fal...
by Manon Boukhroufa -Trijaud.
But at least the film was sufficiently different that it could be enjoyed on its own terms, as a completely different story that happens to have borrowed a few names.
This film frustrated me by sticking reasonably closely to the plot, whilst turning John Trenchard into a selfish, violent man, who cares little about which lives he destroys in his pursuit of a shallow young women.
Despite a sterling performance by Ray Winstone as Elzivir Block, a rather excellent one byBen Chaplin as Squire Mohune/Maskew, and a surprising fidelity to the plot of the novel, this was basically costume fantasy.
For a start, making John - who is in his early teens for most of the book - into a young man, completely changes the dynamics of all the relationships in the story. Yes, being an orphan, he is left to make his own way at fourteen, but this is the eighteenth century. He is a worker, not a schoolboy, at fifteen, just like my grandparents were in the early twentieth century. That doesn't mean he is an adult. His devotion to Elzivir Block, a man of very ambiguous morality, is that of a boy who lacks a father, and his obsessive loyalty to Grace (who he barely knows) is a teenage first crush.
Conflating the Maskew family with the Mohunes is an obvious simplification for a film to make. But it takes away the malign nature of the Mohune legacy. In the book, middle class Grace Maskew, and even her hard-hearted father, are just as much victims of the Mohune influence. He is not rich enough to look after the manor properly or mingle in "society" amongst people of his own class; he is stuck in an isolated village, surrounded only by people whom he despised, and who despise him back. The Maskews are richer, but probably no happier than John.
The fabled Mohune treasure, fabulous wealth obtained as the prize of betrayal, is an ambiguous blessing. No one benefits. Replacing the sense of I'll fortune following I'll deeds with the cackling ghost in the uniform of a Parliamentary trooper was awful,
It is the portrayal of Grace in the film that angered me most. The idea of a young, single woman having legal agency was preposterous.
There is a fashion for revising the portrayal of wonen in the past, to give them more agency. This insults the real women, who had to live and function under appalling limitations.
And from a dramatic point of view, giving Grace more independence does damage to her character. She is passive in the book, because she has few options. She cares about how much money John has, not because she is inherently venal, but because who she marries will not be her choice; they will need money to either impress whoever her legal guardian is attached that time, or to run away on. John is fixated acquiring wealth, because she makes it clear that he needs it on order to marry her, and he makes appalling decisions as a result.
John is basically a good lad. But his desperate need to acquire money leads to bad actions. Unless Grace is portrayed as a real, circumscribed 18th century girl, then her demand that her suitor is not poor comes across as vapid and shallow.
Other subtle changes, reducing the brutality level of the story, weaken it. John is a young man at the start of the film, and a young man at the end of it
But worst of all is the change in the ending. To deny Elzivir his great, heroic moment is a travesty.
This essay is an enjoyable comparison of the book to the Fritz Lang film.: https://www.academia.edu/35540761/Comparative_study_Moonfleet_by_John_Meadle_Fal...
by Manon Boukhroufa -Trijaud.
But at least the film was sufficiently different that it could be enjoyed on its own terms, as a completely different story that happens to have borrowed a few names.
This film frustrated me by sticking reasonably closely to the plot, whilst turning John Trenchard into a selfish, violent man, who cares little about which lives he destroys in his pursuit of a shallow young women.
4Sakerfalcon
Moonfleet was one of my absolute favourite books growing up - unusual for me as generally I preferred books with female leads or about animals. I'm sorry that this new adaptation has handled the book so badly. It sounds like the same issues that plagued the adaptation of The woman in white from 1997 (upon googling to try and find the year I see there was another BBC version made last year, which I know nothing about) which changed the whole motivation behind the plot to something that would have been utterly irrelevant in Victorian society. Otherwise it was an excellently cast, beautifully filmed production, but an utter travesty of the story. Grrr. Well, thank you for watching and suffering through the Moonfleet film so that I can avoid it.
5-pilgrim-
It was such a pity, because Ray Winstone is exactly how I always imagined Elzivir Block.
I have noticed that, despite the whole YA genre, it is rare to find cinematic portrayals of 15-16 year olds, outside the school genre. When filming novels with teenage protagonists, there seems to be a drive to either turning them into "cute kids", or making them a few years older - presumably so that, as in this case, they can have steamy sex scenes (AFAI can remember, John and Grace don't get further than semi-naked, soaking wet clinches, but, well, you see what I mean!)
Thank you for warning me off The Woman in White adaptation.
I have noticed that, despite the whole YA genre, it is rare to find cinematic portrayals of 15-16 year olds, outside the school genre. When filming novels with teenage protagonists, there seems to be a drive to either turning them into "cute kids", or making them a few years older - presumably so that, as in this case, they can have steamy sex scenes (AFAI can remember, John and Grace don't get further than semi-naked, soaking wet clinches, but, well, you see what I mean!)
Thank you for warning me off The Woman in White adaptation.
6-pilgrim-
One week after my latest chemotherapy session, I developed certain symptoms that were slightly worrying, so I rang the Day Care unit where I have the chemo, for advice. After consulting the nurse in charge of the ward, the nurse that I spoke to told me to try to get my GP to come for a home visit, or, if not, "go to A&E'.
I duly phoned the GP surgery. After having to wait for a GP to call me back, I was told no one was available for home visits today, but that I could "try again tomorrow". I explained what the nurse at the Day Care Unit had said, and and asked whether, in his opinion, it would be OK to wait, or whether I should go to A&E.
The GP then asked me to go in to the surgery, where I saw a colleague, who told me to come back in a week's time, so that she could see how it has progressed.
I got home exhausted, and soaked to the skin.
I now have a stinking cold, in addition.
I am not really surprised; that was the week when the chemo is supposed to have most lowered my resistance to infection. Common sense suggests that a crowded bus and a GP's waiting room are the last places that I should be....
The DCU gave me a card so that, if I have to go to A&E, I am seen straight away, and don't have to risk my compromised immune system surrounded by possibly infectious people. But apparently crowded buses, then half an hour in the GP waiting room are fine!
I really don't understand the logic here.
I now feel like crap, and my Internet provider keeps giving zero connection for 4-5 hours at a time, so I haven't been around here much recently.
I duly phoned the GP surgery. After having to wait for a GP to call me back, I was told no one was available for home visits today, but that I could "try again tomorrow". I explained what the nurse at the Day Care Unit had said, and and asked whether, in his opinion, it would be OK to wait, or whether I should go to A&E.
The GP then asked me to go in to the surgery, where I saw a colleague, who told me to come back in a week's time, so that she could see how it has progressed.
I got home exhausted, and soaked to the skin.
I now have a stinking cold, in addition.
I am not really surprised; that was the week when the chemo is supposed to have most lowered my resistance to infection. Common sense suggests that a crowded bus and a GP's waiting room are the last places that I should be....
The DCU gave me a card so that, if I have to go to A&E, I am seen straight away, and don't have to risk my compromised immune system surrounded by possibly infectious people. But apparently crowded buses, then half an hour in the GP waiting room are fine!
I really don't understand the logic here.
I now feel like crap, and my Internet provider keeps giving zero connection for 4-5 hours at a time, so I haven't been around here much recently.
7haydninvienna
>6 -pilgrim-: Ugh, what a dismal day for you. Sending lots of sympathy and concern.
Your comments about the TV adaptation of Moonfleet led me to read the Wikipedia article (I've never read the book, although I remember it being mentioned) on the book. The article contains this sentence about the 2013 version: "Though more of the plot of the book remains than in the 1955 film, it still bears little relation ...", which is basically what you said. It's also worth reading the article on the author, J Meade Falkner. Not the usual author's life.
Your comments about the TV adaptation of Moonfleet led me to read the Wikipedia article (I've never read the book, although I remember it being mentioned) on the book. The article contains this sentence about the 2013 version: "Though more of the plot of the book remains than in the 1955 film, it still bears little relation ...", which is basically what you said. It's also worth reading the article on the author, J Meade Falkner. Not the usual author's life.
8-pilgrim-
My brain is not really functioning properly currently and my temperature is 0.3 degrees off emergency level.
Yes, it is fascinating that Falkner, whose non-fiction focussed on Berkshire and Oxfordshire, should have chosen Dorset for the setting of his masterwork. The sense of life in a small, poor village is excellently portrayed.
@Sakerfalcon and I have been discussing the details of the differences between the 2013 film and book; they are all to the detriment of the characters.
Yes, it is fascinating that Falkner, whose non-fiction focussed on Berkshire and Oxfordshire, should have chosen Dorset for the setting of his masterwork. The sense of life in a small, poor village is excellently portrayed.
@Sakerfalcon and I have been discussing the details of the differences between the 2013 film and book; they are all to the detriment of the characters.
9Meredy
>8 -pilgrim-: Over the years I have often said to my sons, "When I'm in the hospital awaiting the inevitable, don't ask me how I'm feeling or what the doctor said. Ask me what I'm reading."
I admire your staunch determination to sustain the life of the mind despite such daunting assaults on it.
I don't know your author Falkner, but I wonder if you think a portrait of life in a small English village was ever done better than by Eliot.
I admire your staunch determination to sustain the life of the mind despite such daunting assaults on it.
I don't know your author Falkner, but I wonder if you think a portrait of life in a small English village was ever done better than by Eliot.
10-pilgrim-
>9 Meredy: Thank you for those words, @Meredy. It is the ability of books to take my mind elsewhere that is keeping me sane.
I presume that you mean George, rather than T.S., in which case I am afraid that I cannot answer your question, having never read anything by her! Hardy is certainly very effective in this line, about rural life, but I admit not enjoying his overwhelming pessimism about human nature (not that I necessarily think that he is wrong).
ETA: Falkner is a strange bird. He was an arm's manufacturer and poet as well as novelist, and only wrote one novel that anyone has heard of. Moonfleet has a juvenile protagonist and probably a juvenile audience in mind. I read it first in school, when I about 12.
Written in the 19th century and set in the 18th, it is an adventure story of smugglers and a hunt for lost treasure; but it has far more depth of description and characterization than equivalents such as Treasure Island. And, at root, it is about loyalty, devotion and love (and I don't just mean the John/Grace romance). Money is superficially the solution to most of the characters' problems; the story raises real questions about the fallacy of the blind pursuit of it.
I presume that you mean George, rather than T.S., in which case I am afraid that I cannot answer your question, having never read anything by her! Hardy is certainly very effective in this line, about rural life, but I admit not enjoying his overwhelming pessimism about human nature (not that I necessarily think that he is wrong).
ETA: Falkner is a strange bird. He was an arm's manufacturer and poet as well as novelist, and only wrote one novel that anyone has heard of. Moonfleet has a juvenile protagonist and probably a juvenile audience in mind. I read it first in school, when I about 12.
Written in the 19th century and set in the 18th, it is an adventure story of smugglers and a hunt for lost treasure; but it has far more depth of description and characterization than equivalents such as Treasure Island. And, at root, it is about loyalty, devotion and love (and I don't just mean the John/Grace romance). Money is superficially the solution to most of the characters' problems; the story raises real questions about the fallacy of the blind pursuit of it.
11clamairy
>6 -pilgrim-: So sorry about what you're going through. Hope the cold is over and done with soon, and your chemo symptoms subside.
12NorthernStar
>10 -pilgrim-: I have a copy of Moonfleet, but haven't read it in long enough that I don't remember it well. You have inspired me to dig it out and read it again soon.
I do hope your medical trials start to go more smoothly. You seem to be hitting far more than your fair share of roadblocks.
I do hope your medical trials start to go more smoothly. You seem to be hitting far more than your fair share of roadblocks.
13Sakerfalcon
>9 Meredy:, >10 -pilgrim-: Middlemarch is certainly one of, if not the, best portrayals of village life in C19th England. Eliot depicts the social classes and their relationship with the wider world masterfully and tells a number of very entertaining stories while doing so. Winifred Holtby's South Riding is the 20th century equivalent, in my opinion, and just as effective.
14Busifer
>6 -pilgrim-: Sending good thoughts and well-wishes across the Northern Sea.
*hugs*
*hugs*
15pgmcc
>6 -pilgrim-:
I hope your absence from here for the past few days is related to the poor internet service provider performance that anything health related. If it is health related I hope it is because you are receiving some care and that you will be feeling better soon and back on-line. All good thoughts being sent to you.
I hope your absence from here for the past few days is related to the poor internet service provider performance that anything health related. If it is health related I hope it is because you are receiving some care and that you will be feeling better soon and back on-line. All good thoughts being sent to you.
16-pilgrim-
>15 pgmcc:
Thank you Peter. I have been in hospital since the 4th. As a result of the infection that I caught when I was attending the GP surgery.
The cough just got worse and worse. Eventually I could barely speak, so I phoned the cancer clinic again, and they told me to dial 999 and go to A&E.
Ambulance crew obviously didn't see why they had been called, and told me I did not need to take anything with me. But I was neutrapenic and running a fever, so I was admitted. What happened to me IN hospital kept me in longer!
Will write more later.
Thank you Peter. I have been in hospital since the 4th. As a result of the infection that I caught when I was attending the GP surgery.
The cough just got worse and worse. Eventually I could barely speak, so I phoned the cancer clinic again, and they told me to dial 999 and go to A&E.
Ambulance crew obviously didn't see why they had been called, and told me I did not need to take anything with me. But I was neutrapenic and running a fever, so I was admitted. What happened to me IN hospital kept me in longer!
Will write more later.
17pgmcc
>16 -pilgrim-:
I am taking your post to mean you have been discharged, which is good, but your use of the phrase, “...what happened me IN hospital kept me in longer.” leaves me in dread of what you are going to write later.
I am taking your post to mean you have been discharged, which is good, but your use of the phrase, “...what happened me IN hospital kept me in longer.” leaves me in dread of what you are going to write later.
18Narilka
>16 -pilgrim-: Good to hear you are home!
19-pilgrim-
Thank you, yes. I am just catching up on GD threads at the moment, after over a week's absence.
21-pilgrim-
Thank you for your good wishes. I am still recovering from the past few weeks - 3 illnesses on top of a serious chronic condition are not fun. I am online intermittently; will write more later. At least I have been reading...
22-pilgrim-
I tried leaving the house for the first time since my stay in hospital yesterday. Managed to walk as far as the local fireworks display. There were no tickets left. Had overdone it badly, so had to sit outside for an hour or so, then take a taxi home.
Today (or yesterday) I wanted to find an All Souls' Day service. Found that the only local church holding one had moved the commemoration to last weekend (when I couldn't have gone anyway.)
Sometimes I wonder why I bother trying.
Today (or yesterday) I wanted to find an All Souls' Day service. Found that the only local church holding one had moved the commemoration to last weekend (when I couldn't have gone anyway.)
Sometimes I wonder why I bother trying.
25haydninvienna
>22 -pilgrim-: Still more {{{{{hugs}}}}}
26clamairy
>22 -pilgrim-: Adding my hugs to the pile.
28-pilgrim-
Massage Detective Joe (TV series)
I have just finished watching this extremely weird but strangely addictive Japanese TV series. Its basic idea is that since there is a TV show for every strange kind of detective, so why not a massage detective who solves crimes? Enter Joe, an "extreme introvert" - basically a cripplingly shy young man, who solves crimes by massaging the suspects and detecting what they have been doing by which muscles are tense. He is being led on a path of self-development by his boss, the owner of the massage parlour, who, we learn has a connection to the mysterious Man in Black, whose identity is revealed in the final episode.
But that makes the show sound far more logical than it is. It is comedic, parodic and self-referential, and goes some very weird places. It is also performed by hammy actors who frequently "chew the scenery". But it is strangely compulsive viewing. Unlike many comedies, there is no "fall guy"; the humour is not at any one character's expense.
I enjoyed it. I needed some silly light relief, and this was definitely it.
I have just finished watching this extremely weird but strangely addictive Japanese TV series. Its basic idea is that since there is a TV show for every strange kind of detective, so why not a massage detective who solves crimes? Enter Joe, an "extreme introvert" - basically a cripplingly shy young man, who solves crimes by massaging the suspects and detecting what they have been doing by which muscles are tense. He is being led on a path of self-development by his boss, the owner of the massage parlour, who, we learn has a connection to the mysterious Man in Black, whose identity is revealed in the final episode.
But that makes the show sound far more logical than it is. It is comedic, parodic and self-referential, and goes some very weird places. It is also performed by hammy actors who frequently "chew the scenery". But it is strangely compulsive viewing. Unlike many comedies, there is no "fall guy"; the humour is not at any one character's expense.
I enjoyed it. I needed some silly light relief, and this was definitely it.
30-pilgrim-
>29 Busifer: Exactly.
31NorthernStar
>28 -pilgrim-: that sounds kooky enough to be fun!
32-pilgrim-
>31 NorthernStar: If you are in the right mindset for it, I thoroughly recommend it. I found it on Amazon Prime.
33-pilgrim-
I was told this summer that I have a year to live, probably a lot less, because the cancer had spread to my lungs. Consequently, I was told I would be given chemotherapy to "slow it down" and"make it easier".
Since I started the chemotherapy, I have noticed very little change - it has not been making me feel as ill as I had expected, but the lumps seem to be getting noticeably bigger.
I finally managed to get the oncologist to look at the progress, by giving me a CT scan. He was very reluctant to do so, repeatedly saying how it is "early days yet". Today I got the results.
The first oncologist I saw today told me that the "results are mixed" - the lung tumours "appear to be getting smaller", whilst the lump in my breast has got larger. He asked me to wait whilst he spoke to the radiologist, since he thought that the mention of my kidneys in the summary was "probably a typo", since there was no mention of any problem there in the early part of the report (which he clearly had not looked at before I entered his office, since he cheerfully admitted that he could not remember my situation).
When he saw me again, it was with his colleague, who told me that it was his opinion that I had probably never had tumours on my lungs after all. Since I am showing no adverse effects of the chemotherapy therefore wants to try a different chemo regimen, every week, with different drugs. He is now taking of following this with surgery, and is "hoping for a cure".
So...having delayed my treatment until it was apparently too late, because the clinic refused to respond in any meaningful way to all my attempts to contact them (as my "named nurse" would only leave messages on the message service of the phone that she knew to be broken, because she "preferred to leave messages there that you can collect once your phone is repaired" rather than use the replacement number that both I and my GP had provided her)...
They then decide to give up on attempting to cure my breast cancer, because of metastases in my lungs, which apparently were probably never there...
Meanwhile the tumour has grown still further...
And they had intended not to investigate its progress "until your course of chemotherapy is complete", in another 3 months time - which would have been another 3 months of the tumours growing, since the current chemotherapy does not appear to be helping.
Having the hope of a possible cure is a great change.
I am scared about how well I will cope with the new treatment.
But the above does not give me confidence.
Meanwhile I have been waiting for a dietician appointment since April. Three times my GP has agreed to refer me - each time having apparently no memory that I was waiting for an appointment. I know waiting lists are long, but shouldn't I have at least been given a date by now?
Since I started the chemotherapy, I have noticed very little change - it has not been making me feel as ill as I had expected, but the lumps seem to be getting noticeably bigger.
I finally managed to get the oncologist to look at the progress, by giving me a CT scan. He was very reluctant to do so, repeatedly saying how it is "early days yet". Today I got the results.
The first oncologist I saw today told me that the "results are mixed" - the lung tumours "appear to be getting smaller", whilst the lump in my breast has got larger. He asked me to wait whilst he spoke to the radiologist, since he thought that the mention of my kidneys in the summary was "probably a typo", since there was no mention of any problem there in the early part of the report (which he clearly had not looked at before I entered his office, since he cheerfully admitted that he could not remember my situation).
When he saw me again, it was with his colleague, who told me that it was his opinion that I had probably never had tumours on my lungs after all. Since I am showing no adverse effects of the chemotherapy therefore wants to try a different chemo regimen, every week, with different drugs. He is now taking of following this with surgery, and is "hoping for a cure".
So...having delayed my treatment until it was apparently too late, because the clinic refused to respond in any meaningful way to all my attempts to contact them (as my "named nurse" would only leave messages on the message service of the phone that she knew to be broken, because she "preferred to leave messages there that you can collect once your phone is repaired" rather than use the replacement number that both I and my GP had provided her)...
They then decide to give up on attempting to cure my breast cancer, because of metastases in my lungs, which apparently were probably never there...
Meanwhile the tumour has grown still further...
And they had intended not to investigate its progress "until your course of chemotherapy is complete", in another 3 months time - which would have been another 3 months of the tumours growing, since the current chemotherapy does not appear to be helping.
Having the hope of a possible cure is a great change.
I am scared about how well I will cope with the new treatment.
But the above does not give me confidence.
Meanwhile I have been waiting for a dietician appointment since April. Three times my GP has agreed to refer me - each time having apparently no memory that I was waiting for an appointment. I know waiting lists are long, but shouldn't I have at least been given a date by now?
34littlegeek
>33 -pilgrim-: Possible cure is the best news! Sending good thoughts for your recovery.
35Taphophile13
>33 -pilgrim-: Hope this means you finally get the proper treatment and a good outcome.
36pgmcc
>33 -pilgrim-: I hope this means a bit of momentum and hopefully better news to come. As you say, they do not fill you with confidence. Wishing you well.
39Bookmarque
Oh I am hoping for you so hard. I know it's immaterial, but it's all I have. Your experience has been appalling and you deserve so much better. May you be on your way to it.
41NorthernStar
This sounds promising after the run-around you have had! Wishing all the best for this!
42haydninvienna
Oh boy. Different chemo regime every week? That sounds rough. But hopefully it will be worth it. Bonne chance, once again, and bon courage also.
44-pilgrim-
>42 haydninvienna: Not quite as bad as that, Richard. I am going
From: Chemical A, once every 3 weeks
To: Chemical B + Chemical C, once a week.
Frustratingly, until now, I have been only affected badly by the side-effects of the steroids prescribed to deal with the side-effects of the chemotherapy, NOT by any actual side effects of the chemotherapy. Yesterday the doctor told me that in that case, I need not take the steroids.
That is annoying, because I specifically asked that question of the nurses at the Day unit where I am given the chemotherapy, and was told "no, you must complete the course of tablets regardless". (Having severe incontinence inflicted in order to deal with nausea, that I don't have anyway, seemed a poor exchange.) So, apparently, I have been going through that for no reason other than the fact that the nurses wanted to inflict that humiliation on me!
Thank you all for your good wishes.
If I appear not to be rejoicing much at the "good news", it is because, after the way I keep getting told inaccurate or conflicting information, I am not going to let myself believe in that possibility, until I see some evidence for it (in terms of actual improvement). It gives me a new set of possibilities that I must try to be prepared for; but false hope is what really destroys the spirit. (The latter being pilgrim's words of wisdom for today!)
From: Chemical A, once every 3 weeks
To: Chemical B + Chemical C, once a week.
Frustratingly, until now, I have been only affected badly by the side-effects of the steroids prescribed to deal with the side-effects of the chemotherapy, NOT by any actual side effects of the chemotherapy. Yesterday the doctor told me that in that case, I need not take the steroids.
That is annoying, because I specifically asked that question of the nurses at the Day unit where I am given the chemotherapy, and was told "no, you must complete the course of tablets regardless". (Having severe incontinence inflicted in order to deal with nausea, that I don't have anyway, seemed a poor exchange.) So, apparently, I have been going through that for no reason other than the fact that the nurses wanted to inflict that humiliation on me!
Thank you all for your good wishes.
If I appear not to be rejoicing much at the "good news", it is because, after the way I keep getting told inaccurate or conflicting information, I am not going to let myself believe in that possibility, until I see some evidence for it (in terms of actual improvement). It gives me a new set of possibilities that I must try to be prepared for; but false hope is what really destroys the spirit. (The latter being pilgrim's words of wisdom for today!)
46haydninvienna
>44 -pilgrim-: second paragraph, second sentence: yes, absolutely. “Humiliating” is an entirely appropriate way to describe that, although I suspect that the reason was probably lack of thought rather than intent. Which really makes no difference to you, of course.
As Hugh says, wishing you strength. And hoping very hard for you that the hope is not false.
As Hugh says, wishing you strength. And hoping very hard for you that the hope is not false.
47hfglen
Or, in the vernacular of the province: Amandla! And, with regard to the sentence Richard highlighted, "Thina sizonqoba!" (We shall overcome).
48Sakerfalcon
Wishing you the best of luck as you start your new regimen. I pray that the outcome will be good.
49littlegeek
>44 -pilgrim-: Steroids are terrible, but be careful and don't go off them cold turkey, you have to taper off.
50-pilgrim-
>49 littlegeek: That is what I always thought, but that is not how they were prescribed. When I was on the epirubicin, I had to take steroid tablets twice a day, for 5 days afterwards (then stop).
After today's session, I was not prescribed any steroid tablets, having had them mixed in with the chemo and administered intravenously.
After today's session, I was not prescribed any steroid tablets, having had them mixed in with the chemo and administered intravenously.
51-pilgrim-
Thank you to everyone for their good wishes, and also to Hugh for simultaneously expanding my vocabulary.
52Narilka
>33 -pilgrim-: Just catching up. I'm cautiously optimistic!!! It is great that you have good news for once :)
53-pilgrim-
>52 Narilka: I know! It is nice to behave varied the tone of this thread a bit. ;-)
54-pilgrim-
It couldn't last.
Further to >44 -pilgrim-::
I was surprised yesterday that when the nurse gave me my package of post-chemo medications, there were no steroid tablets included at all (the doctor had said they would be optional to use, but I had expected them to be included).
I queried this to her, and was told condescendingly that was "because I have already administered them to you, in your drip, together with the chemotherapy".
Today I received a phonecall from the same nurse. Apparently she had phoned the pharmacy to check, after our conversation. As a result they sent over the steroids - and a mouthwash - that they should have given me.
But, since the nurse had not bothered to tell me that she was checking, only that my treatment was complete and I was free to go, when the ambulance arrived, I went.
So today, because "you were not there when the tablets were sent over" (because SHE had told me to go!), she expected my friend to undertake a 3 hour each way journey to come to the hospital to collect them.
As an alternative she suggested that I should "go to your GP" to get her to prescribe them - when it was sitting in a GP's surgery (where infectious people naturally congregate) that put me in hospital last month, and so delayed my treatment (after which the clinic nurses had told me that I should not do that again).
She then asked me if I "had any at home" - which of course I had not, since the nurses had previously insisted that finishing the course was essential (see >44 -pilgrim-:).
She said that I should have taken the tablets for 2 days, starting today - implying that it was my fault that she had told me to go home without them yesterday, and now did not have a friend available to drop everything to spend an entire day on correcting her mistake - one that would have been easily resolved yesterday if she hadn't been so arrogant as to insist to me that I was wrong, and not tell me that she was in fact checking.
Since her confident incorrect assertions yesterday make me less confident about today's equally confident assertions, I asked whether they are really for only 2 days, or for 5 (as before), pointing out that the 5 day regine would be major problem, with weekly chemo.
She insisted that the steroids cannot be having any effect on on my bladder - since apparently she knows better than both the empirical evidence and the senior doctor whom I saw on Tuesday!
She, again patronisingly, explained that the steroids only "keep your appetite up" and prevent nausea. I pointed out that I have no problem with eating and no nausea. She said "oh", and signed off.
Don't you think asking about my symptoms would have been a better place to start, before telling me to do something that the doctors have said I should dial 999 rather than do again, or expecting me to find a friend with nothing better to do than spend an entire day on correcting her mistake?
Incidentally yesterday, when I mentioned that my weight is actually rising, and that I am now overweight, her response was a dismissive "who told you that?" I pointed out that this was the result of my BMI calculation (which is a generally accepted standard measure).
I am fed up with being treated like an idiot by this woman who, according to her, knows better than everyone else - including the doctors, other nurses, and internationally recognised standards.
Further to >44 -pilgrim-::
I was surprised yesterday that when the nurse gave me my package of post-chemo medications, there were no steroid tablets included at all (the doctor had said they would be optional to use, but I had expected them to be included).
I queried this to her, and was told condescendingly that was "because I have already administered them to you, in your drip, together with the chemotherapy".
Today I received a phonecall from the same nurse. Apparently she had phoned the pharmacy to check, after our conversation. As a result they sent over the steroids - and a mouthwash - that they should have given me.
But, since the nurse had not bothered to tell me that she was checking, only that my treatment was complete and I was free to go, when the ambulance arrived, I went.
So today, because "you were not there when the tablets were sent over" (because SHE had told me to go!), she expected my friend to undertake a 3 hour each way journey to come to the hospital to collect them.
As an alternative she suggested that I should "go to your GP" to get her to prescribe them - when it was sitting in a GP's surgery (where infectious people naturally congregate) that put me in hospital last month, and so delayed my treatment (after which the clinic nurses had told me that I should not do that again).
She then asked me if I "had any at home" - which of course I had not, since the nurses had previously insisted that finishing the course was essential (see >44 -pilgrim-:).
She said that I should have taken the tablets for 2 days, starting today - implying that it was my fault that she had told me to go home without them yesterday, and now did not have a friend available to drop everything to spend an entire day on correcting her mistake - one that would have been easily resolved yesterday if she hadn't been so arrogant as to insist to me that I was wrong, and not tell me that she was in fact checking.
Since her confident incorrect assertions yesterday make me less confident about today's equally confident assertions, I asked whether they are really for only 2 days, or for 5 (as before), pointing out that the 5 day regine would be major problem, with weekly chemo.
She insisted that the steroids cannot be having any effect on on my bladder - since apparently she knows better than both the empirical evidence and the senior doctor whom I saw on Tuesday!
She, again patronisingly, explained that the steroids only "keep your appetite up" and prevent nausea. I pointed out that I have no problem with eating and no nausea. She said "oh", and signed off.
Don't you think asking about my symptoms would have been a better place to start, before telling me to do something that the doctors have said I should dial 999 rather than do again, or expecting me to find a friend with nothing better to do than spend an entire day on correcting her mistake?
Incidentally yesterday, when I mentioned that my weight is actually rising, and that I am now overweight, her response was a dismissive "who told you that?" I pointed out that this was the result of my BMI calculation (which is a generally accepted standard measure).
I am fed up with being treated like an idiot by this woman who, according to her, knows better than everyone else - including the doctors, other nurses, and internationally recognised standards.
55-pilgrim-
I know the above might sound like a trivial mistake, but it is the confident authority with which I am repeatedly given false information that is worrying me.
I knew enough to query the medication issue.
I (after taking previous advice to go to a GP surgery (see >6 -pilgrim-:), which resulted in my developing 'flu and being hospitalised - with serious consequences, since it delayed my chemotherapy, and my tumour grew visibly vin the interim) knew enough not to meekly acquiesce when she told me to do the same thing again.
Having bothered to already raise the issue with the doctors who prescribed it, I did not meekly accept her assertion that the steroids "could not" cause the severe side-effects that I experience (having already suffered them unnecessarily for 9 weeks, because of false assertions by the previous nurse that they were "essential" ( when it turns out that they were prescribed in order to alleviate symptoms that I do not experience)).
The consequences of trusting this nurse would have ranged from enduring unnecessary side-effects, to risking possible hospitalisation and treatment delay (or worse,as tthe doctors have warned that on these new chemotherapy drugs, the risks associated with possible infection are now much higher).
So what about all the other confident assertions made?
Do these people only talk rubbish in areas where I know enough to challenge them? It seems unlikely.
So it seems probable that there are other untrue statements being blithely made, which I am accepting because I know no better.
And that worries me.
I knew enough to query the medication issue.
I (after taking previous advice to go to a GP surgery (see >6 -pilgrim-:), which resulted in my developing 'flu and being hospitalised - with serious consequences, since it delayed my chemotherapy, and my tumour grew visibly vin the interim) knew enough not to meekly acquiesce when she told me to do the same thing again.
Having bothered to already raise the issue with the doctors who prescribed it, I did not meekly accept her assertion that the steroids "could not" cause the severe side-effects that I experience (having already suffered them unnecessarily for 9 weeks, because of false assertions by the previous nurse that they were "essential" ( when it turns out that they were prescribed in order to alleviate symptoms that I do not experience)).
The consequences of trusting this nurse would have ranged from enduring unnecessary side-effects, to risking possible hospitalisation and treatment delay (or worse,as tthe doctors have warned that on these new chemotherapy drugs, the risks associated with possible infection are now much higher).
So what about all the other confident assertions made?
Do these people only talk rubbish in areas where I know enough to challenge them? It seems unlikely.
So it seems probable that there are other untrue statements being blithely made, which I am accepting because I know no better.
And that worries me.
56Bookmarque
OMG I am SO sorry and outraged on your behalf. The level of incompetence and uncaring is staggering. That you have to suffer for it is so unacceptable. I know you have to put all your energy into guiding your care, but is there anyone you can talk to who can help or sack them or be an advocate for you? It seems so ridiculous to keep people hanging and getting terrible care like this.
57-pilgrim-
You know that I spent 3 months being refused a second opinion?
If have been stating clearly since September that I wish to transfer to another region.
I have, in sequence been told
1. that if I transfer before treatment is started that I will have to go through a full referral and assessment sequence again, which would delay ANY treatment further (probably true)
2. that (although there is a specialist willing to accept my referral, but who will (obviously) require access to records of the tests etc. done here) if I transfer my treatment will be interrupted and delayed by having to go through re-referral by GP (which contradicts information given by other specialist); he therefore refused to take the name of that specialist, saying that I would first have to find and register with a GP of that region (a process that would introduce a major delay).
3. Having only prevented the progress of transfer by refusing to take down the details which I supplied, he then write this up to my GP as 'the patient has hinted that she may consider transferring at some future point"!
4. The next on oncology appointment a different doctor, said that a transfer could be done easily, "once you know who you want to transfer to"; but once I pointed out that the only reason that the name was not already in my notes was because his colleague refused to record it, switched to the argument that I could not transfer just now because "it is too early to tell how your cancer is responding to treatment", and we don't even measure that until after the 4th cycle, so we don't have the information to pass on to "him" (as J have clearly stated several times, the other oncologist is female, but apparently that is an inconceivable concept for these men, because they persist with the masculine pronoun regardless). Eventually, he did, reluctantly, agree to perform the relevant scan - this is the one that shows my lungs as "improved"/"clear", but my breast tumour increased (which he could have seen visibly from the original visit, if he had not declined to examine me on the whole that it is "to early to tell").
5. On this last visit, they seemed to have finally accepted that I am serious; and will transfer, but "not yet". The oncologist who had flatly refused to take the name at our previous meeting, now talked about knowing a colleague in the relevant region, who "might be willing to take you on" and that he would approach him when they meet at a forthcoming conference and ask him. When I pointed out that I already had a consultant
who was willing to take me on, and gave her name, he replied "never heard of him.
This was when he started talking in terms of a possible cure, and that he was going to try a new combination of drugs, that have very good results for my type of cancer, but they are not widely used, "so if you transfer it is likely that you will not be able to get them and your outcome will be worse".
6. He also arranged for the "named nurse" to speak to me afterwards. She "explained" that the "doctor only opposes the transfer because he is very possessive about his patients and wants the best for you". She also claimed that she "understands why you want to do this, but they don't see the bigger picture" and that she will try to pursuade them and investigate the possibility. She said that she would phone me with the results (but since she is the woman who a) did not return any of my calls this summer & b) never called after the chemotherapy clinic had "arranged" for her to (I was in the room whilst they did so, so I know that their call was made)... I am not holding my breath.)
I find it peculiar that the reasons given keep shifting, and the only constant is that they will not proceed with the actions needed for me to transfer.
There are places I could GO TO for support - but they are at sufficient distance that I would find the journey taxing, without the complications of standing waiting at unsheltered bus stops for 50 minutes, plus the risks of crowded public transport, with s compromised immune system.
All non-essential support is predicated on the assumption that you have friends or family available with cars to take you everywhere, as required. (I have neighbours with cars, who I have asked for help, but they have refused, since they "know" that I am "lying" and that "there is a perfectly good direct bus service" - which they "know" because they used it 10 years ago (when, presumably, it did actually exist).
And yes, I am extremely frustrated.
If have been stating clearly since September that I wish to transfer to another region.
I have, in sequence been told
1. that if I transfer before treatment is started that I will have to go through a full referral and assessment sequence again, which would delay ANY treatment further (probably true)
2. that (although there is a specialist willing to accept my referral, but who will (obviously) require access to records of the tests etc. done here) if I transfer my treatment will be interrupted and delayed by having to go through re-referral by GP (which contradicts information given by other specialist); he therefore refused to take the name of that specialist, saying that I would first have to find and register with a GP of that region (a process that would introduce a major delay).
3. Having only prevented the progress of transfer by refusing to take down the details which I supplied, he then write this up to my GP as 'the patient has hinted that she may consider transferring at some future point"!
4. The next on oncology appointment a different doctor, said that a transfer could be done easily, "once you know who you want to transfer to"; but once I pointed out that the only reason that the name was not already in my notes was because his colleague refused to record it, switched to the argument that I could not transfer just now because "it is too early to tell how your cancer is responding to treatment", and we don't even measure that until after the 4th cycle, so we don't have the information to pass on to "him" (as J have clearly stated several times, the other oncologist is female, but apparently that is an inconceivable concept for these men, because they persist with the masculine pronoun regardless). Eventually, he did, reluctantly, agree to perform the relevant scan - this is the one that shows my lungs as "improved"/"clear", but my breast tumour increased (which he could have seen visibly from the original visit, if he had not declined to examine me on the whole that it is "to early to tell").
5. On this last visit, they seemed to have finally accepted that I am serious; and will transfer, but "not yet". The oncologist who had flatly refused to take the name at our previous meeting, now talked about knowing a colleague in the relevant region, who "might be willing to take you on" and that he would approach him when they meet at a forthcoming conference and ask him. When I pointed out that I already had a consultant
who was willing to take me on, and gave her name, he replied "never heard of him.
This was when he started talking in terms of a possible cure, and that he was going to try a new combination of drugs, that have very good results for my type of cancer, but they are not widely used, "so if you transfer it is likely that you will not be able to get them and your outcome will be worse".
6. He also arranged for the "named nurse" to speak to me afterwards. She "explained" that the "doctor only opposes the transfer because he is very possessive about his patients and wants the best for you". She also claimed that she "understands why you want to do this, but they don't see the bigger picture" and that she will try to pursuade them and investigate the possibility. She said that she would phone me with the results (but since she is the woman who a) did not return any of my calls this summer & b) never called after the chemotherapy clinic had "arranged" for her to (I was in the room whilst they did so, so I know that their call was made)... I am not holding my breath.)
I find it peculiar that the reasons given keep shifting, and the only constant is that they will not proceed with the actions needed for me to transfer.
There are places I could GO TO for support - but they are at sufficient distance that I would find the journey taxing, without the complications of standing waiting at unsheltered bus stops for 50 minutes, plus the risks of crowded public transport, with s compromised immune system.
All non-essential support is predicated on the assumption that you have friends or family available with cars to take you everywhere, as required. (I have neighbours with cars, who I have asked for help, but they have refused, since they "know" that I am "lying" and that "there is a perfectly good direct bus service" - which they "know" because they used it 10 years ago (when, presumably, it did actually exist).
And yes, I am extremely frustrated.
58Bookmarque
OMG woman, I'm so sorry this is happening to you. Many people here in the US long for socialized medicine or something like it and hold England up as some kind of shining example, but your system seems horribly Byzantine to me. They hold you hostage it seems. I know that doesn't help and that our system has issues to, but damn, I'd be flipping out if I had the energy in your situation.
59-pilgrim-
>58 Bookmarque: Our system has changed since Richard's (far more positive) experience of it. It has been substantially privatised since then, the current system seems to be neither one thing nor the other. (To say more would flout the rules of this esteemed establishment.)
But what is happening, and how things should happen seem not to be matching up.
But what is happening, and how things should happen seem not to be matching up.
60Narilka
>57 -pilgrim-: Potential good news aside, there has been nothing easy about your experience so far. I suspect that "extremely frustrated" is an understatement. I am highly outraged on your behalf. Sending virtual hugs.
61Karlstar
>57 -pilgrim-: I'm very sorry to hear about your struggles with both the system and your illness. I wish you the best and I really hope your physicians improve!
62haydninvienna
Good lord, these people! Many of them appear to be so thick—I won’t say what I was thinking, it’s pretty coarse. My experience of the NHS is with the Oxfordshire trust, which still seems to do a decent job. But a bit of research will find you lots of horror stories, validated by official inquiries. Try the Mid-Staffordshire ones, for example. For non-Brits: the NHS system is based on geographical areas, each of which is managed by a trust, so that where you live decides which trust covers you. Since each trust has a considerable degree of autonomy, there is variation in standards of care (to put it mildly). This is sometimes called a postcode lottery.
None of that helps @-pilgrim-, of course. All I can do is send best wishes and hopes, which I do, in great heaping pailfuls.
None of that helps @-pilgrim-, of course. All I can do is send best wishes and hopes, which I do, in great heaping pailfuls.
63haydninvienna
I should add that my experience is also second-hand except for GP appointments. Most of the family’s experience is that of my wife. Since she is sitting opposite me, I just asked her to sum it up briefly. Her answer was “I’ve never had a problem”. This covers maintenance of a couple of chronic conditions and a couple of hospitalisations for injuries. Once again of course, this doesn’t help @-pilgrim- nor reduce the ghastliness of what’s happening to her. It just emphasises how much of a postcode lottery there is.
64-pilgrim-
The latest installment of the farce:
I phoned the ambulance transport service to find out about time they would be collecting me today - and found that they were not intending to. Transport to chemotherapy had not been booked.
So, I became suspicious. I phoned the day unit. No, they were not expecting me - even though they had noted last week that I had started a new regime of weekly chemotherapy, no one had actually scheduled a session of chemo FOR the next week!
So, it has now been booked. But it seems that a discussion about coming back next week for treatment, and being told to go home now, not only does not imply that I will not be expected to send someone back to collect medication (which I had to do without - see >55 -pilgrim-: ) it also does not mean that I will actually receive the treatment that week!
I phoned the ambulance transport service to find out about time they would be collecting me today - and found that they were not intending to. Transport to chemotherapy had not been booked.
So, I became suspicious. I phoned the day unit. No, they were not expecting me - even though they had noted last week that I had started a new regime of weekly chemotherapy, no one had actually scheduled a session of chemo FOR the next week!
So, it has now been booked. But it seems that a discussion about coming back next week for treatment, and being told to go home now, not only does not imply that I will not be expected to send someone back to collect medication (which I had to do without - see >55 -pilgrim-: ) it also does not mean that I will actually receive the treatment that week!
65NorthernStar
>64 -pilgrim-: could all (most of) your issues be caused by the aforementioned nurse? Perhaps she is going through something causing her to repeatedly drop the ball. Personal issues? Early-onset Alzheimer's? Or maybe she just hates you.
66haydninvienna
>64 -pilgrim-: Staggering level of incompetence. How on earth do these people find their way to work in the morning? >65 NorthernStar: I am a firm believer in the saying "never assume malice when incompetence is an adequate explanation", but you do wonder ...
67Narilka
>66 haydninvienna: I agree. The incompetence has been going on for so long it does make you wonder. And I wonder if anyone else at @-pilgrim-'s clinic is having similar issues.
68-pilgrim-
When I arrived for chemo (at 10am) the guy who welcomes, does blood pressure and weight etc. said that I was not on the list. So I explained about yesterday's conversation, and he went off to consult people, abd eventually cleared it that I would receive treatment.
I also explained clearly that I had come early, as arranged, to have my bloods taken, but was unclear whether I should now go to the haematology department: he said "no, they will be done here".
I was then assigned a chair, and a nurse (the same one as last week) - and left to sit there until the normal time for my appointment, at which point the senior nurse came to take blood.
I then had to wait for the results. These did not arrive until late afternoon. As a result the ambulance arrived to take me home before the treatment finished (at 7pm), and my nurse was not happy, because the day unit normally closes at 5pm.
I pointed out that I had come at 10am, so she said I must arrive earlier than that next week.
But what does arriving earlier achieve? It is when THEY chose to actually take the blood samples that sets how long it will be before they get the results.
How does increasing the number of hours that I sit waiting for them to do so help?
I also explained clearly that I had come early, as arranged, to have my bloods taken, but was unclear whether I should now go to the haematology department: he said "no, they will be done here".
I was then assigned a chair, and a nurse (the same one as last week) - and left to sit there until the normal time for my appointment, at which point the senior nurse came to take blood.
I then had to wait for the results. These did not arrive until late afternoon. As a result the ambulance arrived to take me home before the treatment finished (at 7pm), and my nurse was not happy, because the day unit normally closes at 5pm.
I pointed out that I had come at 10am, so she said I must arrive earlier than that next week.
But what does arriving earlier achieve? It is when THEY chose to actually take the blood samples that sets how long it will be before they get the results.
How does increasing the number of hours that I sit waiting for them to do so help?
69-pilgrim-
If I sound frustrated by the administrative chaos, it is because actually I am terrified.
I am having to double-check at every conceivable stage that what I have been told will happen has actually been arranged. If I don't do that, my treatment vanishes.
At the moment I am still well enough to do all the cross-checking. But I cannot expect always to be able to do this. Once I am not, what will happen then?
I am having to double-check at every conceivable stage that what I have been told will happen has actually been arranged. If I don't do that, my treatment vanishes.
At the moment I am still well enough to do all the cross-checking. But I cannot expect always to be able to do this. Once I am not, what will happen then?
70Bookmarque
Oh sweetie. If I were there I’d be your secretary. Really. And taxi driver.
71-pilgrim-
>70 Bookmarque: I am in the wrong place at the wrong time.
72-pilgrim-
Since a lot of my reviews recently have been disappointed, I thought I would write about something that I did enjoy:
Le Retour du Héros directed and written by Laurent Tirard>. Despite basically being a romantic comedy, it never violated 19th century attitudes.
However its grasp of the history of the Napoleonic wars is rather bizarre. Neuvilleapparently deserted after he saw Joubert get his head blown off at a French defeat on the Austrian campaign. In fact, General Joubert was shot through the heart at the Battle of Novi, against combined Austrian and Russian forces, in 1799. However, Captain Neuville was not called away, from his imminent marriage, to join the Austrian campaign, until 1809 (according to the opening sequence of the film)!
And I am surprised to find a stray troop of Cossacks suddenly attacking a country estate in Burgundy in 1812, and that, Moreover, they are dressed in the manner of Zaparozhian Cossacks at the time of the Khmelnytsky Uprising against the Polish-Lithuanian Commonwealth (as immortalised in such films as Ogniem i mieczem), rather than in the uniforms of the Imperial Russian Army.
So, the military history aspect is complete hokum, but the comedy of manners - which is a sort of middle class version of Le Retour de Martin Guerre, but played for comedy rather than tragedy - was closely observed and rather fun.
N.b. I watched this in French (with English subtitles)
Le Retour du Héros directed and written by Laurent Tirard>. Despite basically being a romantic comedy, it never violated 19th century attitudes.
However its grasp of the history of the Napoleonic wars is rather bizarre. Neuville
And I am surprised to find a stray troop of Cossacks suddenly attacking a country estate in Burgundy in 1812, and that, Moreover, they are dressed in the manner of Zaparozhian Cossacks at the time of the Khmelnytsky Uprising against the Polish-Lithuanian Commonwealth (as immortalised in such films as Ogniem i mieczem), rather than in the uniforms of the Imperial Russian Army.
So, the military history aspect is complete hokum, but the comedy of manners - which is a sort of middle class version of Le Retour de Martin Guerre, but played for comedy rather than tragedy - was closely observed and rather fun.
N.b. I watched this in French (with English subtitles)
73clamairy
>69 -pilgrim-: I'm just going to pile more hugs on here. As the Quakers say I'll hold you in the light.
(I'm not a Quaker, but I approve that sentiment.)
(I'm not a Quaker, but I approve that sentiment.)
74-pilgrim-
All hugs gratefully received. :)
Yesterday's chemo session went relatively uneventfully. Apart from the ambulance being sent to collect two patients, but only collecting one (as the nurse found out when she enquired), so that it had to be rebooked and I had to be discharged to the ward as the clinic was closing (the third time that this has happened), and wait an extra few hours.
However I did hear from another patient, how the oncologist was insisting since April that the aches she was complaining of were "just arthritis"; a scan has now shown that they are bone metastases. She is now receiving palliative care.
I also noticed that the letter from the oncologist to my GP still refers to my treatment as "palliative care" and the lung metastases as "reduced" (NOT absent).
So it appears that he has a pattern of giving false reassurance.
Yesterday's chemo session went relatively uneventfully. Apart from the ambulance being sent to collect two patients, but only collecting one (as the nurse found out when she enquired), so that it had to be rebooked and I had to be discharged to the ward as the clinic was closing (the third time that this has happened), and wait an extra few hours.
However I did hear from another patient, how the oncologist was insisting since April that the aches she was complaining of were "just arthritis"; a scan has now shown that they are bone metastases. She is now receiving palliative care.
I also noticed that the letter from the oncologist to my GP still refers to my treatment as "palliative care" and the lung metastases as "reduced" (NOT absent).
So it appears that he has a pattern of giving false reassurance.
75haydninvienna
So it appears... Gaah. Not helpful, is it? Once again, see the words of wisdom in #44. Still more hugs.
76-pilgrim-
>75 haydninvienna: Or a pattern of that clinic making fatal errors. Either way, not encouraging.
77-pilgrim-
I am tearing my hair out (again).
I have a diet regimen, prescribed by a dietician, in order to try to manage my chronic health problems. When I was diagnosed with cancer last April, I asked my GP if she could refer me back to a dietician to find out how I should modify this on the light of that diagnosis. (Each time I asked how the referral was going, I got the impression she didn't remember what I was talking about, but said she would check.)
I asked her to repeat the referral, when I was told I would be staying a course of chemotherapy.
After the cancer clinic leaflets have me dietary advice that was the opposite of the dietary regimen I am currently on, I asked her to repeat the referral (for the third time).
This time I got a response from the dieticians. A few weeks ago, I got a letter, asking me to phone to make an appointment. I have been trying to do so, but always get an answering machine and, although it says that they will phone back"within 2 working days", they never do.
Today I received another letter from them, giving me an appointment - in March next year!
How is that supposed to assist with the chemotherapy that I am currently receiving?
I have a diet regimen, prescribed by a dietician, in order to try to manage my chronic health problems. When I was diagnosed with cancer last April, I asked my GP if she could refer me back to a dietician to find out how I should modify this on the light of that diagnosis. (Each time I asked how the referral was going, I got the impression she didn't remember what I was talking about, but said she would check.)
I asked her to repeat the referral, when I was told I would be staying a course of chemotherapy.
After the cancer clinic leaflets have me dietary advice that was the opposite of the dietary regimen I am currently on, I asked her to repeat the referral (for the third time).
This time I got a response from the dieticians. A few weeks ago, I got a letter, asking me to phone to make an appointment. I have been trying to do so, but always get an answering machine and, although it says that they will phone back"within 2 working days", they never do.
Today I received another letter from them, giving me an appointment - in March next year!
How is that supposed to assist with the chemotherapy that I am currently receiving?
78Darth-Heather
>77 -pilgrim-: wow. I have been following your posts, and thank you for sharing your journey with us, but I don't often comment because little of what I have to say is fit for print.
let's leave it at "arrrgh!" and "grrr!"
let's leave it at "arrrgh!" and "grrr!"
79MrsLee
>77 -pilgrim-: I am so sorry. I think you had better start your own research online. It is difficult, but there are good websites out there, some of them even will respond to questions by email. One more task you don't need, I know. *Hugs*
80haydninvienna
>77 -pilgrim-: Actually, >78 Darth-Heather: puts it pretty well. There really isn’t much to say about this incident other than something involving words like “unbelievable incompetence”. Which might make us feel better, but doesn’t actually do you too much good. But we’re still here. Hugs from me too.
81-pilgrim-
I have not updated events here for quite a while. There is more to tell, but I need too gather my thoughts a bit about that.
However a couple of current events are worth mentioning:
Last week my chemotherapy was cancelled:
No one attempted to contact either me or my carer.
I found out because
(i) I received a text telling me that my ambulance transport had been cancelled. When I phoned them to find out why, they told me that it had been done by the clinic.
(ii) That evening my first cousin once removed texted me to let me know that my chemotherapy had been "rescheduled" for the following week.
They next day I phoned the clinic to find out why it had been cancelled. I had a little difficulty getting to speak to anyone, because when the admin assistant initially put me through to the nurses' station, after fairly long wait, someone eventually picked up, laughed loudly and hung up. When I immediately dialed back in, the admin assistant was obviously expecting me, because she addressed by name before I had said anything, and asked if she could take my number, and get someone to call me back.
The senior nurse who eventually called me back told me that
(i) my chemotherapy had been cancelled because my neutrophil count was low;
(ii) since I was not there to collect my latest blood form, they would post it to me, so that the district nurse/phlebotomist could take my blood sample as usual today - Monday.
No form arrived.
The phlebotomist arrived as expected. She said that she could not take a blood sample without the appropriate form.
I gave her the number of the clinic, and she phoned them.
They told her that they had posted the form to me THIS MORNING! (For non-UK residents, I should point out that it has been many decades since we have had a mail service that offered same day delivery.) They have had since last Tuesday to do this.
Does this make sense to anybody?
However a couple of current events are worth mentioning:
Last week my chemotherapy was cancelled:
No one attempted to contact either me or my carer.
I found out because
(i) I received a text telling me that my ambulance transport had been cancelled. When I phoned them to find out why, they told me that it had been done by the clinic.
(ii) That evening my first cousin once removed texted me to let me know that my chemotherapy had been "rescheduled" for the following week.
They next day I phoned the clinic to find out why it had been cancelled. I had a little difficulty getting to speak to anyone, because when the admin assistant initially put me through to the nurses' station, after fairly long wait, someone eventually picked up, laughed loudly and hung up. When I immediately dialed back in, the admin assistant was obviously expecting me, because she addressed by name before I had said anything, and asked if she could take my number, and get someone to call me back.
The senior nurse who eventually called me back told me that
(i) my chemotherapy had been cancelled because my neutrophil count was low;
(ii) since I was not there to collect my latest blood form, they would post it to me, so that the district nurse/phlebotomist could take my blood sample as usual today - Monday.
No form arrived.
The phlebotomist arrived as expected. She said that she could not take a blood sample without the appropriate form.
I gave her the number of the clinic, and she phoned them.
They told her that they had posted the form to me THIS MORNING! (For non-UK residents, I should point out that it has been many decades since we have had a mail service that offered same day delivery.) They have had since last Tuesday to do this.
Does this make sense to anybody?
82haydninvienna
>81 -pilgrim-: You already know the answer. Nothing about this makes any sense at all. How many more ways can there be for these people to demonstrate their incompetence?
83-pilgrim-
>83 -pilgrim-: Like this?
The attitude at the clinic was that it was not their fault that my blood samples had not been taken (see >81 -pilgrim-:); apparenttly there is a website that the phlebotomist "ought" to have downloaded the form (that they had failed to post me, until the day it was required).
So, had to wait until a blood-taking specialist was available.
And then, since, when the results came back, the neutrophil count was low, had to wait again for the consultant to give the go-ahead for the chemotherapy.
This meant that, although I had had to get up at 6, in order to be ready for whenever the ambulance turns up, and arrived in the clinic mid-morning, it was mid-afternoon before my treatment actually started.
This meant, of course, that the ambulance for the return journey arrived before the treatment had finished. So it had to be rebooked - and the earliest available time was 7pm.
Since the clinic shuts at 5pm, that meant that (again) I had to move to the attached ward, and sit and wait in the foyer there.
Nothing happened at 7pm.
At 7:20, my friend received a peculiar phonecall, that sounded as if it might be from the Patient Transport Service - but they were not responding to anything he said, as if they could not hear him. So, while he went to the external door of the ward, I rang the number that had just called in - and got a recorded message to the effect that the Patient Transport Service was now closed, and listing is opening hours. So I tried sending s text to the same number, going it would get through to whoever had called.
After 10 minutes, when it was obvious that I was going to get no reply, I went to the nursing station in the ward, explained what had happened and asked if they could check whether the ambulance was still coming.
The nurse that I spoke to said that she did not know how to do that without the journey reference number - which, of course, I did not have, because this was a rebooking made by one of the nurses in the chemo unit, and I had had nothing to do with it.
She then said "not to worry", she would go and ask Brian, and "Brian is wonderful, he will know how to do this".
So I waited.
At 8.45pm, the male nurse who had been sitting chatting at the nurses' station for at least the last half hour, called across and asked me when my transport was due. When I told him 7pm, he then demanded that I come over to him (because that is so much easier than him bothering to walk to me!) for further details.
When I got to him, I found that he was the famous Brian. He (only now) started making phonecalls, and then told me that the earliest an ambulance could come was 10.30pm, but probably more like 11.30pm, but that I might have to stay overnight. I asked whether they would therefore be able to provide the medications that I routinely take at night - and he made it clear that no, they would not, that was not their problem, and what a great favour he was doing me by trying to arrange transport at all.
I asked him, politely, whether he thought it was reasonable for them to expect me to get home after midnight from an appointment that had finished at 5pm.
He then tried to claim that the delay was somehow my fault, that he did not need to do anything at all - apparently it was only "out of the goodness of his heart, because he saw me sitting there" that he had decided to do something.
So I asked him whether they really expected me to continually pester the nurses' station after I had been told someone was handling it, when for at least part of that time they had been dealing with the problems of someone who was obviously far more seriously ill - and the doctor there confirmed that that would have been inappropriate - at which point Brian side-tracked off on a eulogy to himself about how wonderful he had been in arranging something for her!
He seemed to be claiming that this was the first time he knew there was anything wrong with my transport, so I asked him whether he was claiming that the nurse whom I had spoken to had lied about showing him, and he said "no". He then went back on to praising himself for having solved the other woman's problems.
I do not understand this mentality. He does half of what he has been asked to do by a colleague, then sits around gossiping for over half an hour, before deciding to do something about a situation that he had been alerted to an hour earlier - and then expects me to be impressed by his performance!
I should add that in all the hours that I was waiting, no one offered me food, or even something to drink. (The ward is sealed, and can only be entered by a keypad, because of the infection risks, and the cafeteria closes around 6pm anyway, so there was no way that I could fend for myself.)
So that is why I have not been around much. Chemotherapy is draining; but the side-effects of getting my food/medication routine repeatedly messed up like this takes a lot longer to recover from.
And I really don't have the energy for days this long any more.
The attitude at the clinic was that it was not their fault that my blood samples had not been taken (see >81 -pilgrim-:); apparenttly there is a website that the phlebotomist "ought" to have downloaded the form (that they had failed to post me, until the day it was required).
So, had to wait until a blood-taking specialist was available.
And then, since, when the results came back, the neutrophil count was low, had to wait again for the consultant to give the go-ahead for the chemotherapy.
This meant that, although I had had to get up at 6, in order to be ready for whenever the ambulance turns up, and arrived in the clinic mid-morning, it was mid-afternoon before my treatment actually started.
This meant, of course, that the ambulance for the return journey arrived before the treatment had finished. So it had to be rebooked - and the earliest available time was 7pm.
Since the clinic shuts at 5pm, that meant that (again) I had to move to the attached ward, and sit and wait in the foyer there.
Nothing happened at 7pm.
At 7:20, my friend received a peculiar phonecall, that sounded as if it might be from the Patient Transport Service - but they were not responding to anything he said, as if they could not hear him. So, while he went to the external door of the ward, I rang the number that had just called in - and got a recorded message to the effect that the Patient Transport Service was now closed, and listing is opening hours. So I tried sending s text to the same number, going it would get through to whoever had called.
After 10 minutes, when it was obvious that I was going to get no reply, I went to the nursing station in the ward, explained what had happened and asked if they could check whether the ambulance was still coming.
The nurse that I spoke to said that she did not know how to do that without the journey reference number - which, of course, I did not have, because this was a rebooking made by one of the nurses in the chemo unit, and I had had nothing to do with it.
She then said "not to worry", she would go and ask Brian, and "Brian is wonderful, he will know how to do this".
So I waited.
At 8.45pm, the male nurse who had been sitting chatting at the nurses' station for at least the last half hour, called across and asked me when my transport was due. When I told him 7pm, he then demanded that I come over to him (because that is so much easier than him bothering to walk to me!) for further details.
When I got to him, I found that he was the famous Brian. He (only now) started making phonecalls, and then told me that the earliest an ambulance could come was 10.30pm, but probably more like 11.30pm, but that I might have to stay overnight. I asked whether they would therefore be able to provide the medications that I routinely take at night - and he made it clear that no, they would not, that was not their problem, and what a great favour he was doing me by trying to arrange transport at all.
I asked him, politely, whether he thought it was reasonable for them to expect me to get home after midnight from an appointment that had finished at 5pm.
He then tried to claim that the delay was somehow my fault, that he did not need to do anything at all - apparently it was only "out of the goodness of his heart, because he saw me sitting there" that he had decided to do something.
So I asked him whether they really expected me to continually pester the nurses' station after I had been told someone was handling it, when for at least part of that time they had been dealing with the problems of someone who was obviously far more seriously ill - and the doctor there confirmed that that would have been inappropriate - at which point Brian side-tracked off on a eulogy to himself about how wonderful he had been in arranging something for her!
He seemed to be claiming that this was the first time he knew there was anything wrong with my transport, so I asked him whether he was claiming that the nurse whom I had spoken to had lied about showing him, and he said "no". He then went back on to praising himself for having solved the other woman's problems.
I do not understand this mentality. He does half of what he has been asked to do by a colleague, then sits around gossiping for over half an hour, before deciding to do something about a situation that he had been alerted to an hour earlier - and then expects me to be impressed by his performance!
I should add that in all the hours that I was waiting, no one offered me food, or even something to drink. (The ward is sealed, and can only be entered by a keypad, because of the infection risks, and the cafeteria closes around 6pm anyway, so there was no way that I could fend for myself.)
So that is why I have not been around much. Chemotherapy is draining; but the side-effects of getting my food/medication routine repeatedly messed up like this takes a lot longer to recover from.
And I really don't have the energy for days this long any more.
84jillmwo
Adding my hugs to the long list of others shown here. I am horrified by this appalling treatment. I am so very sorry that this has been your experience.
85Narilka
You'd think I'd be used to these posts by now, but no. I'm still amazed at the level of incompetence and apparent lack of concern for their patients your clinic has. May you find peace and strength this holiday season.
86-pilgrim-
Thank you both.
I fear that it does get repetitive, and I maybe come out of it seeming s more negative person than I am. But it is draining, and the fact that these are the people who are going to manage my dying terrifies me.
I suppose I felt that it might help to have somewhere a record of the mundane reality of today's NHS.
I fear that it does get repetitive, and I maybe come out of it seeming s more negative person than I am. But it is draining, and the fact that these are the people who are going to manage my dying terrifies me.
I suppose I felt that it might help to have somewhere a record of the mundane reality of today's NHS.
87hfglen
Much discussion about the future of the health system in this country, parts of which still work. The government is very keen on introducing a "National Health Insurance" scheme modelled on your NHS. Bearing in mind the effect the names of Zuma and Gupta have had on this country, I can see and fear that the treatment you are suffering is the "paradise" our lot are trying to lead us towards.
88-pilgrim-
>87 hfglen: Your post led me to some very interesting reading. What is the current health care system in your country?
I have heard accounts from relatives about what it was like in this country before the NHS, and that is not a system to which I would wish to return. I can also remember when the NHS was taken seriously, and funded appropriately, rather than the current two-tier system. To say more would contravene pub rules, but I am very interested in learning about what other systems exist, and how they actually function in practice.
I have heard accounts from relatives about what it was like in this country before the NHS, and that is not a system to which I would wish to return. I can also remember when the NHS was taken seriously, and funded appropriately, rather than the current two-tier system. To say more would contravene pub rules, but I am very interested in learning about what other systems exist, and how they actually function in practice.
89hfglen
>88 -pilgrim-: You deserve an answer with less delay than this. My apologies.
For South Africans in employment and their families, medical aid is a normal part of the remuneration package, and is at least partly paid for by the employer. Schemes vary, and fill the spectrum of good, bad and misdirected (one widely-advertised scheme seems to support everything except paying medical bills). I am fortunate in that my ex-employer continues to pay 2/3 of my medical aid subs as part of the retirement package. The relevant laws make provision that medical aid must pay what are called Prescribed Minimum Benefits (PMB), of which the most important to me are 100% of treatment for emergencies and aftercare from them. My heart problem last year was an emergency and so covered by PMB; the medical aid pays the full cost of the cardiologist every 6 months and most of the medication. They also paid the entire hospital and ambulance bill -- in total, the price of a mid-range car. Some medical aids dictate a panel of doctors and hospitals, but mine doesn't, and so although my GP is relatively nearby, the cardiologist is 50 km away.
For the unemployed (currently just over 29% of the population, which is horrifying), the picture is much less rosy. They nominally can get free treatment in state hospitals, but. The hospitals are dysfunctional, overcrowded, understaffed and badly if at all maintained (Indeed one of the complaints the government has against new graduates from our top medical schools is that they use their intelligence and leave the country rather than work in State hospitals.) And so they import Cubans who don't speak any of our 11 official languages, saying they "give better service". Most equipment seems not to work, even if there is anybody on the staff who knows how to use it. And this is the "paradise" that NHI is supposed to lead us to.
For South Africans in employment and their families, medical aid is a normal part of the remuneration package, and is at least partly paid for by the employer. Schemes vary, and fill the spectrum of good, bad and misdirected (one widely-advertised scheme seems to support everything except paying medical bills). I am fortunate in that my ex-employer continues to pay 2/3 of my medical aid subs as part of the retirement package. The relevant laws make provision that medical aid must pay what are called Prescribed Minimum Benefits (PMB), of which the most important to me are 100% of treatment for emergencies and aftercare from them. My heart problem last year was an emergency and so covered by PMB; the medical aid pays the full cost of the cardiologist every 6 months and most of the medication. They also paid the entire hospital and ambulance bill -- in total, the price of a mid-range car. Some medical aids dictate a panel of doctors and hospitals, but mine doesn't, and so although my GP is relatively nearby, the cardiologist is 50 km away.
For the unemployed (currently just over 29% of the population, which is horrifying), the picture is much less rosy. They nominally can get free treatment in state hospitals, but. The hospitals are dysfunctional, overcrowded, understaffed and badly if at all maintained (Indeed one of the complaints the government has against new graduates from our top medical schools is that they use their intelligence and leave the country rather than work in State hospitals.) And so they import Cubans who don't speak any of our 11 official languages, saying they "give better service". Most equipment seems not to work, even if there is anybody on the staff who knows how to use it. And this is the "paradise" that NHI is supposed to lead us to.
90-pilgrim-
>89 hfglen: This is a conundrum that I have no answer to, which is why I am interested in how different countries tackle it.
I have a relatively rare, congenital condition, which has slowly disabled me (the cancer is just the "icing on the cake"). Although I left university into a relatively well-paying career, the fact that I already had this diagnosis, and hence no prospect of being able to work until normal retirement age, meant that I was told that I was, from a practical point of view, medically uninsurable, in that the premiums would be such, and the exclusion clauses so extensive, that I would be better advised to put money into savings.
Of course, at the time that I received that advice, private medicine in the UK was viewed as primarily providing "extra comfort", such as a private room, carpets in the corridors, a better quality meal, maybe a shorter waiting list for an operation.
Even now, private hospitals tend to be rather specialised affairs, not suited to complex conditions. Because of government waiting list targets, it sometimes happens that an NHS trust will pay for an NHS patient to be treated "privately" (presumably the fees they invite by doing so are less than the Congress that they would incur for not meeting the government targets). Whenever that has happened to me, the private hospital has always transferred me back to the NHS waiting list (thereby putting me to the back of the queue, of course!), on the grounds that they do not have the facilities to cope, should the simple procedure planned run into complications by interaction with my chronic condition.
In countries, like yours, where medical care paid for by insurance is currently the normal approach, would people with inherited degenerative conditions be excluded in the same way as they are from UK cover?
I have a relatively rare, congenital condition, which has slowly disabled me (the cancer is just the "icing on the cake"). Although I left university into a relatively well-paying career, the fact that I already had this diagnosis, and hence no prospect of being able to work until normal retirement age, meant that I was told that I was, from a practical point of view, medically uninsurable, in that the premiums would be such, and the exclusion clauses so extensive, that I would be better advised to put money into savings.
Of course, at the time that I received that advice, private medicine in the UK was viewed as primarily providing "extra comfort", such as a private room, carpets in the corridors, a better quality meal, maybe a shorter waiting list for an operation.
Even now, private hospitals tend to be rather specialised affairs, not suited to complex conditions. Because of government waiting list targets, it sometimes happens that an NHS trust will pay for an NHS patient to be treated "privately" (presumably the fees they invite by doing so are less than the Congress that they would incur for not meeting the government targets). Whenever that has happened to me, the private hospital has always transferred me back to the NHS waiting list (thereby putting me to the back of the queue, of course!), on the grounds that they do not have the facilities to cope, should the simple procedure planned run into complications by interaction with my chronic condition.
In countries, like yours, where medical care paid for by insurance is currently the normal approach, would people with inherited degenerative conditions be excluded in the same way as they are from UK cover?
91haydninvienna
I'm going to weigh in here with a bit of what I recollect from Oz, bearing in mind that I haven't lived there fore some years.
There are both government and private hospitals and government and private health benefits funds. ("Government" is complicated by the fact that Australia is a federation and the hospitals are actually run by the States and Territories, but paid for by the federal government: this has been a major bone of contention for as long as I can remember, but it gives the State pollies and the Feds something to argue about and neither is really interested in changing it.) The government fund covers everybody, in principle, and government hospitals are still relatively safe and effective as far as I know. Costs of all the private funds are similar, and there is a basic list of services that must be covered, so the private funds compete on the extras like dental and optical. If you go to the doctor you will be charged by the doctor and then reimbursed by your health fund, which might be the government one. (There is a vanishing number of doctors who "bulk bill"--that is, charge the government fund directly; this is almost extinct partly because the doctors view the government-set "schedule fee" as insufficient and partly because of a number of spectacular frauds.) The reimbursement is supposed to be 85% of the schedule fee; back in the dark ages I actually did some of the fee-setting regulations. (There are sets of regulations for general medical services, diagnostic imaging, and pathology; each one is as thick as a fair size book.) Most doctors charge well above the schedule fee, so you might get back 50%. There is a limited safety net for people who have numerous doctor visits in a year: after you reach the magic amount you get back 100% of the schedule fee.
In an emergency or a situation of "medical necessity", the state hospital will treat you, and if you're registered for Medicare (the government fund) there will be no bill. If you have private health cover (most people with an income do) you can get varying levels of private hospital coverage. Oddly, I seem to remember that ambulance transport is not covered--normally you can pay a subscription direct to the ambulance service (run by the State or Territory health department) and get cover for it that way.
I remember when my late wife was ill she was treated at the local (Government) hospital and neither of us, as far as I know or remember, ever saw any reason to complain about her treatment. Mind you, that was quite some years ago, but I don't believe things have got spectacularly worse since.
It's a bit Byzantine but it seems to work, more or less. Standards in big city hospitals are very high; out in the bush things may be different, but I've never heard of a horrorshow like @-pilgrim-'s from Australia.
I gather Canada has a similar system: anybody from Canada out there?
There are both government and private hospitals and government and private health benefits funds. ("Government" is complicated by the fact that Australia is a federation and the hospitals are actually run by the States and Territories, but paid for by the federal government: this has been a major bone of contention for as long as I can remember, but it gives the State pollies and the Feds something to argue about and neither is really interested in changing it.) The government fund covers everybody, in principle, and government hospitals are still relatively safe and effective as far as I know. Costs of all the private funds are similar, and there is a basic list of services that must be covered, so the private funds compete on the extras like dental and optical. If you go to the doctor you will be charged by the doctor and then reimbursed by your health fund, which might be the government one. (There is a vanishing number of doctors who "bulk bill"--that is, charge the government fund directly; this is almost extinct partly because the doctors view the government-set "schedule fee" as insufficient and partly because of a number of spectacular frauds.) The reimbursement is supposed to be 85% of the schedule fee; back in the dark ages I actually did some of the fee-setting regulations. (There are sets of regulations for general medical services, diagnostic imaging, and pathology; each one is as thick as a fair size book.) Most doctors charge well above the schedule fee, so you might get back 50%. There is a limited safety net for people who have numerous doctor visits in a year: after you reach the magic amount you get back 100% of the schedule fee.
In an emergency or a situation of "medical necessity", the state hospital will treat you, and if you're registered for Medicare (the government fund) there will be no bill. If you have private health cover (most people with an income do) you can get varying levels of private hospital coverage. Oddly, I seem to remember that ambulance transport is not covered--normally you can pay a subscription direct to the ambulance service (run by the State or Territory health department) and get cover for it that way.
I remember when my late wife was ill she was treated at the local (Government) hospital and neither of us, as far as I know or remember, ever saw any reason to complain about her treatment. Mind you, that was quite some years ago, but I don't believe things have got spectacularly worse since.
It's a bit Byzantine but it seems to work, more or less. Standards in big city hospitals are very high; out in the bush things may be different, but I've never heard of a horrorshow like @-pilgrim-'s from Australia.
I gather Canada has a similar system: anybody from Canada out there?
92hfglen
>90 -pilgrim-: Truth to tell I don't know. Daughter's condition, which is partly congenital, is partly paid in the way described by >91 haydninvienna:. We also carry insurance called "gap cover", which pays the difference between medical aid rates and the actual bill (up to 500% of medical aid rates) for hospital treatment only. So yes, as in Australia private doctors are mostly "contracted out" of medical aid rates, and charge what they wish -- sometimes grotesquely more than medical aid rates.
93-pilgrim-
Thank you both for your detailed replies. I have been trying to get my head around how these systems work, and how to make a comparison.
One salient point that I think makes a crucial difference is the existence of NICE - the National Institute for Clinical Excellence. This body determines what is"best practice" in the treatment of various conditions, based on the scientific evidence. The government will not find treatments not approved by NICE. This factor limits how much a doctor can charge for treating a particular condition; they are limited to the set rate for a limited range of treatments.
The idea behind this was to ensure the practice of evidence-based medicine, and avoid situations where a GP who qualified some time ago continues to prescribe the medication favoured at the time of his training, oblivious of subsequent developments that supersede his favourite method in effectiveness.
For common, well-understood conditions, this works very well. But for rarer, and therefore less studied conditions, this approach can have unfortunate consequences. Where studies aggregate data for related conditions, in order to achieve statistical significance, the treatment identified as being statistically most likely to be effective, may not in fact work for all patients included in that study group. The effect of NICE in such situations is to restrict doctors to only using a limited range of treatments, proven to be ineffective for this sub-group of patients, whilst denying them access to treatments that are known to effective in a minority of cases.
However I suspect that this effective price-capping is what enables the base level care (which is that used by the majority of UK inhabitants, not just those out of employment) to exist at a higher standard than the free care available in the systems that you describe.
The crucial point of comparison is therefore the access to the insurance-covered tier of medical care. Are these insurance systems - whether governmentally or privately organised - allowed to vary premiums on the basis of medical history (either of the client, or of their family?)
Although the payments that we make into our national health system, as a direct deduction from both salaries and from most state benefits, are called "National Insurance contributions" , this is a misnomer. Our payments do not contribute to the 'pot' from which we withdraw at need, instead it contributes to the pot from which all who currently need medical care are drawing. Thus to a large extent, each generation is funding the medical care for the declining years of the previous generation. The economic model assumed that subsequent generations would require less medical care, as the treatments for more conditions were discovered; it failed to take into account the fact that surviving once fatal conditions leaves more people living longer and facing the gradual debility that comes with old age. The government in the early years of the NHS therefore used the contributions as a financial resource, rather than putting them aside against future need; thus creating the current shortfall. (This is not a matter of party politics - the mistake was common to all.)
This seems to be the radical difference. As I understand it, your contributions to medical insurance, whether paid by self or but employer, directly relate to the total sum available to provide medical care.
One salient point that I think makes a crucial difference is the existence of NICE - the National Institute for Clinical Excellence. This body determines what is"best practice" in the treatment of various conditions, based on the scientific evidence. The government will not find treatments not approved by NICE. This factor limits how much a doctor can charge for treating a particular condition; they are limited to the set rate for a limited range of treatments.
The idea behind this was to ensure the practice of evidence-based medicine, and avoid situations where a GP who qualified some time ago continues to prescribe the medication favoured at the time of his training, oblivious of subsequent developments that supersede his favourite method in effectiveness.
For common, well-understood conditions, this works very well. But for rarer, and therefore less studied conditions, this approach can have unfortunate consequences. Where studies aggregate data for related conditions, in order to achieve statistical significance, the treatment identified as being statistically most likely to be effective, may not in fact work for all patients included in that study group. The effect of NICE in such situations is to restrict doctors to only using a limited range of treatments, proven to be ineffective for this sub-group of patients, whilst denying them access to treatments that are known to effective in a minority of cases.
However I suspect that this effective price-capping is what enables the base level care (which is that used by the majority of UK inhabitants, not just those out of employment) to exist at a higher standard than the free care available in the systems that you describe.
The crucial point of comparison is therefore the access to the insurance-covered tier of medical care. Are these insurance systems - whether governmentally or privately organised - allowed to vary premiums on the basis of medical history (either of the client, or of their family?)
Although the payments that we make into our national health system, as a direct deduction from both salaries and from most state benefits, are called "National Insurance contributions" , this is a misnomer. Our payments do not contribute to the 'pot' from which we withdraw at need, instead it contributes to the pot from which all who currently need medical care are drawing. Thus to a large extent, each generation is funding the medical care for the declining years of the previous generation. The economic model assumed that subsequent generations would require less medical care, as the treatments for more conditions were discovered; it failed to take into account the fact that surviving once fatal conditions leaves more people living longer and facing the gradual debility that comes with old age. The government in the early years of the NHS therefore used the contributions as a financial resource, rather than putting them aside against future need; thus creating the current shortfall. (This is not a matter of party politics - the mistake was common to all.)
This seems to be the radical difference. As I understand it, your contributions to medical insurance, whether paid by self or but employer, directly relate to the total sum available to provide medical care.
94-pilgrim-
And the latest addition to the tale of incompetence:
I do not have chemotherapy this week - because it would otherwise take place on Christmas Day, when the clinic is closed.
So I was a little surprised to see the district nurse on my doorstep this morning. No one had notified her that I am not having chemotherapy on Christmas Day.
This is of minimal inconvenience for me, but I felt sorry for the nurse's wasted journey.
I do not have chemotherapy this week - because it would otherwise take place on Christmas Day, when the clinic is closed.
So I was a little surprised to see the district nurse on my doorstep this morning. No one had notified her that I am not having chemotherapy on Christmas Day.
This is of minimal inconvenience for me, but I felt sorry for the nurse's wasted journey.
95haydninvienna
>93 -pilgrim-: No knowledge on how the Australian system deals with rare chronic conditions, but there is no Australian equivalent of NICE that I know of.
Having seen Woden Valley Hospital in Canberra, and the John Radcliffe and Horton Hospitals in the Oxfordshire NHS trust, in action, I don’t believe that the publicly funded Australian system is poorer than that in the UK. However, as far as I know there has never been any pretence that the Australian public system is funded otherwise than from general revenue. That is, no government has ever pretended that it has set up a fund to pay for hospitals and the medical care system. The health system is funded (over and above receipts for treatment given) from the annual tax revenues and that’s that.
As to medical history, Australian private health insurers can and do deny coverage for “pre-existing conditions”, but the basic care scheme covers everything regardless. Conditions that there is a family history of don’t seem to matter: my late wife had a family history of melanoma, but this didn’t exclude her from the private insurer when she developed the condition herself (nor did the fact that she had had a suspicious mole removed 20 years before).
Having seen Woden Valley Hospital in Canberra, and the John Radcliffe and Horton Hospitals in the Oxfordshire NHS trust, in action, I don’t believe that the publicly funded Australian system is poorer than that in the UK. However, as far as I know there has never been any pretence that the Australian public system is funded otherwise than from general revenue. That is, no government has ever pretended that it has set up a fund to pay for hospitals and the medical care system. The health system is funded (over and above receipts for treatment given) from the annual tax revenues and that’s that.
As to medical history, Australian private health insurers can and do deny coverage for “pre-existing conditions”, but the basic care scheme covers everything regardless. Conditions that there is a family history of don’t seem to matter: my late wife had a family history of melanoma, but this didn’t exclude her from the private insurer when she developed the condition herself (nor did the fact that she had had a suspicious mole removed 20 years before).
96-pilgrim-
>95 haydninvienna: The ability to exclude does seem to be the crux of the matter. My father was unable to get health insurance for the same reason as myself, so there would never have been a possibility of my being covered by my father's policy. And my condition had manifested, and been diagnosed, before I completed university, so there was no window in which I could have been insured under standard terms.
I am not doing well under the current system here. But it looks as if I would fare worse under any genuinely insurance-based system?
How variable are the standards in Australian public hospitals? The phrase "post code lottery" has genuine relevance here.
I am not doing well under the current system here. But it looks as if I would fare worse under any genuinely insurance-based system?
How variable are the standards in Australian public hospitals? The phrase "post code lottery" has genuine relevance here.
97hfglen
>93 -pilgrim-: "a GP who qualified some time ago continues to prescribe the medication favoured at the time of his training, oblivious of subsequent developments that supersede his favourite method in effectiveness"
A couple of years ago I inadvertently found out what happens to these "fossil" GPs here: they become advisors to the medical aid, and dictate what treatments may or may not be funded. I needed an appendectomy in a hurry, and the surgeon is the local tame expert in keyhole techniques. Phone Head Office in Pretoria for authorisation (it wasn't a PMB emergency). No ways. Absolutely no keyhole surgery under any circumstances whatsoever. It doesn't exist in the manual, therefore it doesn't exist, period.
Your comment about a minority of cases certainly applies here.
A couple of years ago I inadvertently found out what happens to these "fossil" GPs here: they become advisors to the medical aid, and dictate what treatments may or may not be funded. I needed an appendectomy in a hurry, and the surgeon is the local tame expert in keyhole techniques. Phone Head Office in Pretoria for authorisation (it wasn't a PMB emergency). No ways. Absolutely no keyhole surgery under any circumstances whatsoever. It doesn't exist in the manual, therefore it doesn't exist, period.
Your comment about a minority of cases certainly applies here.
98-pilgrim-
>97 hfglen: Ouch!
That exemplifies my ambivalence about NICE. They have discontinue the only treatment that helped my condition - their approved options do nothing for me - and this tipped me over into being unable to work, and so has had a major negative effect on my life. Yet the problem of antiquated treatments is very real, and I do appreciate the problem that NICE was set up to combat has more implications than the purely budgetary.
That exemplifies my ambivalence about NICE. They have discontinue the only treatment that helped my condition - their approved options do nothing for me - and this tipped me over into being unable to work, and so has had a major negative effect on my life. Yet the problem of antiquated treatments is very real, and I do appreciate the problem that NICE was set up to combat has more implications than the purely budgetary.
100Taphophile13
>99 -pilgrim-: Peace and Joy to you as well. Hoping the New Year holds some good things for you.
101hfglen
>99 -pilgrim-: What @Taphophile13 said.
103Sakerfalcon
Just catching up on your catalogue of woes and horrific incompetence. My wish for you in 2020 is that, somehow, against all odds, things will improve for you. One can hope.
