One of the final items on this morning's Today was a discussion of Lord Saatchi's Medical Innovations Bill, which will be presented in the House of Lords this Thursday.
If passed the bill would allow doctors to experiment with innovative new techniques or drugs on dying patients without the fear of prosecution. It would only happen when all else has failed and when the patients are nearing the end of their life.
If you want to read the case for the bill then there's a piece by Dominic Nutt, the director of communications for the Medical Innovation Bill, in the Telegraph.
That paper also reports that the results of a public consultation have revealed overwhelming public and professional support for the bill.
In fact, were in not for the deeply hostile comments below the line at the Telegraph, you might assume from that paper's reporting that hardly anyone other than public liability lawyers oppose it.
That doesn't appear to be true though.
If you Google around, you find that there are quite a lot of people opposed to this bill, not just public liability lawyers, and if you want to read the case against the bill then there's a piece by NHS manager David Hills in the Guardian which puts the other side of the argument.
[Correction: David Hills is now an IT manager, having left the NHS some years ago].
If you Google around, you find that there are quite a lot of people opposed to this bill, not just public liability lawyers, and if you want to read the case against the bill then there's a piece by NHS manager David Hills in the Guardian which puts the other side of the argument.
[Correction: David Hills is now an IT manager, having left the NHS some years ago].
Mr Hills also argues against the claims made by the bill's supporters about the level of support there is for its enactment:
The Saatchi bill, driven by a slick social media campaign and its own Twitter account, has been touted as the means by which we will find a cure for cancer, as well other currently incurable diseases. It is claimed to have wide support across the medical profession and patient groups. Unfortunately, evidence shows otherwise, and the pro-Saatchi campaign has been marred by frequent and repeated accusations regarding lack of openness or honesty, either about the campaign and its support, or the real effect this bill would have if passed into law.
I only know all this because I've been checking the story out ever since Evan Davis interviewed a supporter of the Medical Innovations Bill at around 8.52 am.
The supporter on Today, Professor Sir Michael Rawlins, made the case in favour of the bill so plausibly that I wanted to hear the other side to see what their counter-argument could possibly be to it, and then - having heard both sides - make up my own mind. That opportunity was not granted by Today.
Plus - and this is what really drove me to check it out further - I was taken aback by Evan Davis' complete lack of impartiality during the discussion.
Most of his questions were put from a standpoint that strongly supported the bill (and, if anything, went even further in support of such experimentation than the bill itself), thus reinforcing his guest's argument - which isn't how it should be at all - ...
Most of his questions were put from a standpoint that strongly supported the bill (and, if anything, went even further in support of such experimentation than the bill itself), thus reinforcing his guest's argument - which isn't how it should be at all - ...
It surely is the case that we would learn things that would be useful to other patients and people, you know, when their life has all but been taken from them by unfortunate disease, might feel that that is part of why they would like to have experimental treatment?...and then, even worse, Evan asked about Sir Michael about the opponents of the bill in an incredulous tone - a tone that implied that no one in their right mind could oppose such a sane and sensible measure:
Tell me this. Why is it so controversial? Because you're looking after the patient, you're having a go with things that might help them. Just what is the reason [laughing] why people don't...What are the reservations?That's not something I'm imagining, by the way. That tone was definitely there, and it's completely inappropriate from an 'impartial' broadcaster. And the question itself was so loaded against those opponents' point of view as to be a mockery of an 'impartial' question. Unsurprisingly, Sir Michael was very dismissive of their concerns.
In the full-throated way of Twitter, someone posted this immediately after the interview, and it's hard to disagree with:
Jesus jeffing christ, just heard the #saatchibill propaganda piece on @BBCr4today Complaint on the way. Power and money talk in BBC it seems
— FW (@frozenwarning) June 2, 2014
My mother died on the 17th May from pancreatic cancer. A notoriously hard to treat disease (3% survive 5 years same as 40 years ago). Current treatments failed her. She wanted a new treatment not approved by NICE because not enough large trials had been completed.
ReplyDeleteThis is not about "experimenting on the dying". This is about fighters like my Mum not being blocked from trying really promising new treatments because approval takes up to 17 years and hospital boards are protectionist mainly on a financial basis.
Pleade don't assume patients are clueless lemmings. Being denied a way to prolong your life for substantially administrative reasons, having your autonomy and right to manage your own risks in a well informed way taken away, being told to go home and put your affairs in order because 2 more large trials need to happen in the UK (they've already happened and led to approval in Europe and the US, but NICE won't take those results into account).
Walk a mile in our shoes and the shoes of the many parents who's children are denied life saving treatments because even when approved by NICE treatments are not approved for kids.
I welcome your balanced article, but the flip side to the propaganda is also fiercely active. Giving quacks free reign to try their snake oil out on vulnerable people without fear of prosecution. Neither perspective is correct.
Multidisciplinary teams, careful risk assessment processes fully involving the patient and institution heads will all have a part to play in any attempt to go outside approved standards for treatment.
Approved standards of treatment which have been stagnating (little in PC care has changed in 4 decades) because of the fear and protectionism the medical innovation bill seeks to damp down.
All are entitled to their views, but at least try to imagine that conversation, that one where they say "nothing more can be done" when you know something that could have prolonged your life is already working for some lucky trial subjects and WILL be available to someone like you in 1 or 2 years time.
’m sorry to hear about your mother and you make a very good case for the bill. However, the fundamental issue is that old chestnut, impartiality. We’re always wrestling with this problem.
DeleteOn one hand, the BBC’s attempts to avoid being ‘judgmental’ sometimes lead to giving undue credibility to undeserving causes. On the other hand, behaving as if the matter is settled, as Evan does here, seems even worse.
Since your case is strong, allowing the other, weaker argument to be openly examined might actually help make your case. That way, it reinforces your argument and avoids “shutting down debate.”
Craig said:
The supporter on Today, Professor Sir Michael Rawlins, made the case in favour of the bill so plausibly that I wanted to hear the other side to see what their counter-argument could possibly be to it, and then - having heard both sides - make up my own mind. That opportunity was not granted by Today.
I’m inclined to guess that apart from reservations about the power of the Saatchi marketing machine, the argument ‘against’ hinges on the quality of the bill and the danger of any unintended consequences if, for example it was flawed through being reflexive or hastily drafted.
(Why should I have to guess what the BBC hasn’t told me?)
I did read Maurice Saatchi’s deeply affecting articles about his wife’s terminal illness, but I haven’t read David Hills’s arguments against the bill nor looked at Twitter.
I’m glad you appreciated Craig’s characteristically balanced approach. Really, all he was asking of the BBC is to provide balanced reporting.
Yes. Some lucky trial participants do receive new innovative treatments. But until the trial is completed, we do not know that. That is why there is a trial. To find out.
ReplyDeleteThe Saatchi Bill will damage this. Instead of going into trials, patients may opt for the Saatchi exemption and go straight for the drug without knowing whether it works, actually makes matters worse or has unacceptable side effects.
There is the greater good, then there are humane exceptions. No system of law or regulation survives without those exceptions.
DeleteI suggest we invite one of the bill team to comment on provisions to be made to avoid losing evidence gathered by individuals trying new treatments. It is something patients also want as most value the fact that their managed risk could potentially help many others Needing a mechanism to do that isn't a reason to object to the bill.
Patients are overwhelmingly willing to risk unexpected side effects if in their last 12 months of life with no other options. As stated above most "novel" treatments are not untested.
I suggest you look into NICEs benchmarks for adequate evidence to make treatments available, perhaps comparing them to other, more medically advanced countries.
It is a tightrope to walk that can only be dealt with on a case's individual merits.
Thank you for commenting, Sarah. I'm far from unsympathetic to the points you've made, and appreciate you making them here.
ReplyDeleteCraig, Sue, thank you for your replies. I took the article in the spirit intended. I detest having vital information 'spun' at me (why I struggle with deciding how/whether to vote). Thank you for allowing me to highlight what looks like common ground in terms of much needed individual freedoms. You'll see from the blog entry I subsequently wrote that we have more in common than not (http://infospectives.me/2014/06/02/is-the-bbc-showing-bias-reporting-on-the-medical-innovation-saatchi-bill/).
DeleteWhile believing, against an American yardstick, the BBC does a pretty good job, I'm glad I found the blog.
The new draft of the bill is out today. Addressing many of the concerns about gathering evidence from innovation and providing adequate oversight of the decision making processes. I've shared a link to that and an email from Dominic Nutt on my blog http://infospectives.me/2014/06/05/dont-throw-the-baby-out-with-the-bathwater-saatchi-bill/
ReplyDeleteHi Sarah, I see the bill has passed its first reading in the House of Lords.
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