tag:blogger.com,1999:blog-3272054900018746845.post2002401226931974892..comments2024-01-01T17:21:52.555+00:00Comments on Is the BBC biased?: Lord Saatchi's Little Helper?Craighttp://www.blogger.com/profile/08741318067991857821noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-3272054900018746845.post-20446721873823533592014-06-05T21:21:50.923+01:002014-06-05T21:21:50.923+01:00Hi Sarah, I see the bill has passed its first read...Hi Sarah, I see the bill has passed its first reading in the House of Lords. Craighttps://www.blogger.com/profile/08741318067991857821noreply@blogger.comtag:blogger.com,1999:blog-3272054900018746845.post-29704959076551097312014-06-05T10:51:17.895+01:002014-06-05T10:51:17.895+01:00The new draft of the bill is out today. Addressin...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/Sarah Clarkehttp://infospectives.menoreply@blogger.comtag:blogger.com,1999:blog-3272054900018746845.post-12162327682312696082014-06-02T22:35:41.969+01:002014-06-02T22:35:41.969+01:00Craig, Sue, thank you for your replies. I took the...Craig, 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/).<br /><br />While believing, against an American yardstick, the BBC does a pretty good job, I'm glad I found the blog.<br /><br />Sarah Clarkehttp://www.infospectives.menoreply@blogger.comtag:blogger.com,1999:blog-3272054900018746845.post-23921940155392113142014-06-02T22:19:59.505+01:002014-06-02T22:19:59.505+01:00Thank you for commenting, Sarah. I'm far from ...Thank you for commenting, Sarah. I'm far from unsympathetic to the points you've made, and appreciate you making them here. <br /><br /><br /><br /><br />Craighttps://www.blogger.com/profile/08741318067991857821noreply@blogger.comtag:blogger.com,1999:blog-3272054900018746845.post-23357874979336992002014-06-02T20:31:50.015+01:002014-06-02T20:31:50.015+01:00’m sorry to hear about your mother and you make a ...’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.<br />On 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.<br /><br />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.”<br />Craig said:<br /><i>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><br /><br />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. <br />(Why should I have to <i>guess</i> what the BBC hasn’t told me?) <br /><br />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.<br /><br />I’m glad you appreciated Craig’s characteristically balanced approach. Really, all he was asking of the BBC is to provide balanced reporting.<br />suehttps://www.blogger.com/profile/02693686958796849316noreply@blogger.comtag:blogger.com,1999:blog-3272054900018746845.post-52742063236431224502014-06-02T12:39:36.169+01:002014-06-02T12:39:36.169+01:00There is the greater good, then there are humane e...There is the greater good, then there are humane exceptions. No system of law or regulation survives without those exceptions. <br /><br />I 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.<br /><br />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. <br /><br />I suggest you look into NICEs benchmarks for adequate evidence to make treatments available, perhaps comparing them to other, more medically advanced countries.<br /><br />It is a tightrope to walk that can only be dealt with on a case's individual merits.Sarah Clarkehttp://www.infospectives.menoreply@blogger.comtag:blogger.com,1999:blog-3272054900018746845.post-52171849377402236922014-06-02T11:32:06.121+01:002014-06-02T11:32:06.121+01:00Yes. Some lucky trial participants do receive new ...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.<br /><br />The 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.Le Canard Noirhttps://www.blogger.com/profile/07565056022495154803noreply@blogger.comtag:blogger.com,1999:blog-3272054900018746845.post-44837860037272162342014-06-02T10:58:30.967+01:002014-06-02T10:58:30.967+01:00My mother died on the 17th May from pancreatic can...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. <br /><br />This 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. <br /><br />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).<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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.<br /><br />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.Sarah Clarkehttp://www.infospectives.menoreply@blogger.com