FOR URGENT ACTION


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Ketchup
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Re: FOR URGENT ACTION

Post by Ketchup » Sun Nov 08, 2015 10:54 am

Sorry, DD - I could not put my signature to the above (even though it's past the deadline now) because I disagree with the point it is trying to make.
The “Medical Innovation” Bill is designed to encourage and protect doctors who wish to try new things in cancer treatment with the aim of speeding up the rate of discovery. Saatchi says that current treatments are “medieval, degrading and ineffective” and that doctors are prevented from deviating from standard care for fear of medical negligence claims. Fear of litigation is a “barrier to progress”.
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Current clinical negligence law provides redress to patients who have suffered harm as a result of treatment which would not be supported by any responsible body of medical opinion.
Fact: In practice, 'redress to patients' under current clinical negligence law is a long hard slog, tuned to fail (from the point of view of the wronged patient) and pointedly designed to result in a patient, already sick and stressed, giving up pursuing any course they have have undertaken under such closed shop laws.
This Bill seeks to remove that right of redress where a doctor has taken a decision to treat in what the Bill defines as a “responsible” manner, even when no other doctor would support the treatment actually given. We do not believe that depriving patients of the right of redress is the best way to promote medical innovation.
I don't think so. I think it aims to do the opposite.
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Dubious Dick
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Re: FOR URGENT ACTION

Post by Dubious Dick » Sun Nov 08, 2015 10:55 am

It is ludicrous to suggest that current treatments are "medieval, degrading and ineffective". Such a statement does not even deserve the respect of being refuted in detail. One only has to look at survival rates, especially in relation to cancers caught early, to see what amazing progress has been made in recent years.

I agree that litigation for medical negligence often seems to be a complex and difficult area of the law, but then there are reasons why it is complicated in that people who are not cured may see negligence where there is none.

One of the key reasons why advances in cancer treatments are difficult is the very question of the ethics of trying new approaches on.

Quoting from the Quackometer piece:

'Perhaps the biggest clue about the effects of this bill is to see who is most supporting it. The Alliance of Natural Health, an industry lobby organisation for the ‘natural health sector [vitamin pill pedlers], has called on its supporters to respond to the public consultation. The ANH regularly undermines evidence in medicine and sees the Bill as a way of introducing so-called integrative treatments without having to provide robust RCT evidence'.

That highlights the serious potential concerns this proposed legislation raises. I have heard first hand from the daughter of a man who fell for the large dose vitamin c injections and other nonsense that some quack practitioners support for example, and if this proposed legislation were to open the door even a little for such charlatans then it needs quashing.

There may indeed be ways to open up more room for medical experimentation especially in late stage cancers where survival rates are low, but it is NOT to open up the field to every pseudo quack going.

The fact that the bill is sponsored by someone whose only real expertise was advertising is a real red flag. If it were re-written and supported by people with experience of the medical field then it may be worth something. As it is it must be resisted.

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Ketchup
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Re: FOR URGENT ACTION

Post by Ketchup » Sun Nov 08, 2015 10:55 am

Dubious Dick wrote:The fact that the bill is sponsored by someone whose only real expertise was advertising is a real red flag.
The man's first-hand involvement goes some way to attributing to the reasoning behind the proposed bill - and good luck to him if he has the means and the wherefores to get his views across and maybe assist in getting something practical, definitive and positive done along the way.

In his own words:
I don’t remember feeling anger when my wife, the novelist Josephine Hart, died in 2011 of ovarian cancer. I certainly didn’t want to thump anyone. It was a calamity, but grief is not a disqualification for rational thought.

I knew that no one had done anything wrong, or behaved badly, that the doctors who had treated Josephine were neither incompetent nor inefficient, that they did what they were supposed to do with drugs and chemotherapy. They followed “standard procedure”, even if the treatment was degrading, medieval and ineffective, and they knew it would lead to her death.

What puzzled me was how there could be such a ready acceptance in the medical profession of “standard procedure” in the light of the hundreds of thousands who die of cancer. In the case of advanced gynaecological cancers, such as my wife’s, “standard procedure” is 40 years old, offers poor quality of life, and the mortality rate is 100 per cent, with the survival rate correspondingly zero.

They did it, I came to understand, because “standard procedure” is the only safe route they can take legally. The patient, their family, their partners and their lovers may all be desperate for something else to be tried, something new, something innovatory, but the law prevents any innovation, however reasonably chosen and carefully managed. Why? Because it defines innovation as deviation from “standard procedure”, and deviation makes it medical negligence.
http://www.telegraph.co.uk/health/saatc ... ovate.html
Dubious Dick wrote:If it were re-written and supported by people with experience of the medical field then it may be worth something.
The bill in its present form is already well supported by people with experience of the medical field.

Thousands of doctors, judges and patients support the Bill (including my own highly experienced and respected Consultant Oncologist).
Judges and lawyers in particular will have their own vast knowledge and differently perspected experience in the area, garnered from their involvement and expertise surrounding the very complicated legalities involved with the medical negligence area of law.
The Medical Innovation Bill has been enthusiastically supported across the medical, legal and health charity sectors and by the general public, patients and their family and friends.
Read some of their comments here: http://saatchibill.tumblr.com/Support#.U1qDpVcvB64

Further reading: http://saatchibill.tumblr.com/
~ Today is the Tomorrow you worried about Yesterday ~

Matt
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Re: FOR URGENT ACTION

Post by Matt » Sun Nov 08, 2015 10:56 am

Ketchup wrote:In his own words:
They followed “standard procedure”, even if the treatment was degrading, medieval and ineffective, and they knew it would lead to her death.

What puzzled me was how there could be such a ready acceptance in the medical profession of “standard procedure” in the light of the hundreds of thousands who die of cancer. In the case of advanced gynaecological cancers, such as my wife’s, “standard procedure” is 40 years old, offers poor quality of life, and the mortality rate is 100 per cent, with the survival rate correspondingly zero.
I'll accept that 40 is middle aged but I object to being called medieval.

Or should that be

Ic tréowe that féowertiggéare béo midde gewintred bot Ic forsæce mé benemnan "medieval.".

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Zep
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Re: FOR URGENT ACTION

Post by Zep » Sun Nov 08, 2015 10:57 am

You're English, you're old. Accept this, move on.

Matt
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Re: FOR URGENT ACTION

Post by Matt » Sun Nov 08, 2015 10:58 am

Dubious Dick wrote:One only has to look at survival rates, especially in relation to cancers caught early, to see what amazing progress has been made in recent years.
It can be easy to read more into survival rates than is strictly meaningful. Especially in relation to cancers caught early.

Take the case of Margaret. Margaret carries a ticking timebomb in her DNA, a cause of death inherited from her mother. Somewhere a butterfly flaps its wings and Margaret’s reality diverges.

In one reality she’s Peggy who receives a card in the post on her 47th birthday inviting her to come for routine breast screening.
Down the other leg of the trousers of time we call her Marge. Marge’s postman delivers the card to the wrong house.

They find a lump in Peggy’s breast. Marge has the same lump but doesn’t notice.

Peggy goes for test. A biopsy says it’s a tumour. It’s potentially dangerous and should be removed. Peggy goes for more tests and treatment. She loses a breast and has an implant. She’s off work for four months.

Marge treats herself to a new car.

47 was a bad year for Peggy. Her employer has been very supportive but she still feels bad for taking all that time off at such a busy time for the company. When she returns she finds her previous role has expanded and is now split between her and Julia, the lady they took on to help out whilst Peggy was off sick. It’s a year before she gets the all clear. She’s 48 now.

Marge gets promoted during an office reorganisation and has a new employee, Julia.

Peggy returns to her oncologist for a check-up. She’s been very nervous. Stress has been making her lose sleep and putting a brave face on everything has been very tiring. That new girl, Julia is being so much more productive and she’s making Peggy look bad. She could do without having to take time off for doctors appointments but at least it’s good news. The all clear: at 49 she’s survived 2 years since diagnosis.

Marge and her tumour go on holiday. She deserves it. The company is doing really well, expanding all the time and the new girl, Julia is working out really well. She’s so bright and full of energy really taking the heat off of Marge and making the department look good. She’s leaving everything in good hands whilst she’s on the beach.

Peggy is 50 and feels so old. What’s more, her oncologist has bad news. A tumour has been found in her other breast.

Marge can’t believe she’s 50 already. She’s even got one of those cards through the post inviting her for breast screening.

Peggy takes early retirement to fight her cancer. She’s beaten it before and she’ll beat it again. Chemo, surgery, more chemo, she knows the routine.

Marge is shell shocked. Breast cancer: she’s going to need a double mastectomy and chemo. This isn't like it was 40 years ago when her mother died. It’s treatable now. Time to cash in her savings, she was thinking of early retirement anyway.

At 52 Marge and Peggy are both breast cancer survivors. Both have breast implants and both are going back to their oncologists for a check-up. Bad news: secondary breast cancer in the lungs and the liver. The prognosis isn’t good.

Margaret’s mother was 51 when she died after a short but bloody illness, brought on by untreated breast cancer. Marge and Peggy outlived her by two years a testament to better lifestyle, nutrition and modern medicine but how do we measure that impact. Can we split the benefit between these different influences? Peggy survived six years from diagnosis, Marge only three but both died at exactly the same time from exactly the same cause. Peggy just had an earlier treatment that as it turns out didn’t affect the ultimate outcome.

Now of course this tale is exactly that. I’m no reality hopping chaos butterfly with a perspective that spans a probabilistic multiverse. I’m simply making it up to illustrate a point. If there’s one thing that falls lower down the hierarchy of evidence than the ever so humble anecdote it’s a contrived anecdote that never really happened.

So I don’t present this as evidence. That would be absurd. Instead I offer it merely as a plausible scenario and challenge you to measure the success of modern cancer treatments with this possibility in mind.

One possible solution is to measure instead the age of cancer patients at death to see if treatment prolongs life expectancy.

Julia by the way rose up through the ranks to become CEO and a captain of industry. She received a knighthood in the 2037 birthday honours list. At the ceremony she made a rousing address remembering her former colleague’s battle with cancer. Then in front of the world’s holovision cameras she’s snatched the ceremonial sword from the 111 year old queen, un-masked her as a reptilian overlord and extorted from her the cure for cancer which they’d been suppressing for centuries. Who knew that homeopathy was real all along?

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Ketchup
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Re: FOR URGENT ACTION

Post by Ketchup » Sun Nov 08, 2015 10:58 am

A film on TV tonight (11:00pm - True Entertainment - Freeview channel 61) called 'First Do No Harm'. Based on a true story, I wonder if it might possibly have any relevance to some of the discussion in this thread(?)
A woman decides to seek alternative forms of treatment for her epileptic son after the conventional methods employed by his doctors fail to have an impact on his welbeing. However, she encounters resistance from members of the medical establishment, who seek to take legal action to stop her removing her child from the hospital. Drama, based on a true story, starring Meryl Streep
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Tony Williams
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Re: FOR URGENT ACTION

Post by Tony Williams » Sun Nov 08, 2015 10:59 am

Zep wrote:You're English, you're old. Accept this, move on.
Traditionally, that should be move on up. It's a little-known fact that St Peter went to Eton.

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Re: FOR URGENT ACTION

Post by Tony Williams » Sun Nov 08, 2015 11:00 am

Matt wrote: It can be easy to read more into survival rates than is strictly meaningful. Especially in relation to cancers caught early.
Out of curiosity, I wonder if anyone's done a statistical analysis comparing the extra years gained through treatment at hospital with the risk of losing years through contracting a serious illness while in hospital?

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Zep
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Re: FOR URGENT ACTION

Post by Zep » Sun Nov 08, 2015 11:01 am

Tony Williams wrote:
Zep wrote:You're English, you're old. Accept this, move on.
Traditionally, that should be move on up. It's a little-known fact that St Peter went to Eton.
Eton, old sausage.

And yes, he should stop it.

Rainy
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Re: FOR URGENT ACTION

Post by Rainy » Sun Nov 08, 2015 11:02 am

Ketchup wrote:A film on TV tonight (11:00pm - True Entertainment - Freeview channel 61) called 'First Do No Harm'. Based on a true story, I wonder if it might possibly have any relevance to some of the discussion in this thread(?)
A woman decides to seek alternative forms of treatment for her epileptic son after the conventional methods employed by his doctors fail to have an impact on his welbeing. However, she encounters resistance from members of the medical establishment, who seek to take legal action to stop her removing her child from the hospital. Drama, based on a true story, starring Meryl Streep
Did you watch it?

panama
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Re: FOR URGENT ACTION

Post by panama » Sun Nov 08, 2015 11:02 am

This thread is making me feel a bit odd. Its all a bit too close to home.

For a start my eldest is epileptic. She's lucky. Her epilepsy isn't as intrusive as some. She takes her meds and doesn't get fits. As far as I know she hasn't had one for years but while she was fitting, in her middle to late teens, it was a scary time. Her doctors found a balance of drugs that both worked and allowed her to lead a normal life. Eliminating the combinations of drugs that didn't work or negatively affected her ability to live and learn normally didn't take too long though it was long enough to ruin a portion of her schooling. She has some restrictions on her life - alcohol consumption has to be severely restricted; recreational drugs are out; she may not be able to have children - but that is a lot better than most epileptic some of whom never get the condition under control and who have to live with the possibility that their next fit may kill them.

The "alternative" therapy in the film, mentioned above, isn't really. What it is, or was at the time of the events portrayed in the film, was the original and, before the invention of anti-convulsive drugs, the only treatment for epilepsy that had any evidence of being effective. The Ketogenic diet had been, it seems, forgotten or ignored at that time. This is no longer the case and it is regarded as a complementary therapy, particularly effective for and with children who have conditions that are hard to control.

The second reason for the thread being of particular poignancy at the moment - Matt's tale especially - is that I'm going in to hospital this week to have a tumour removed. The exact status of the tumour is, at present, unknown; attempted biopsies having failed to establish it's precise nature. My surgeon's opinion is that it is of a type with a higher survival rate than the other likely candidate so the discussion of these rates is a bit moot.

BTW I'd appreciate it if those of you who are Facebook friends didn't mention this there. I'm not wishing to worry above mentioned offspring and her sister - it's exam time at eldest's uni.

Tony Williams
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Re: FOR URGENT ACTION

Post by Tony Williams » Sun Nov 08, 2015 11:03 am

Ouch - hope it goes well for you, Panama.

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chaggle
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Re: FOR URGENT ACTION

Post by chaggle » Sun Nov 08, 2015 11:03 am

Yes - from me too. Been there myself many years ago and I know how it all feels.
Don't blame me - I voted remain :con

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