Not This Day

24th March 2016

So the Access to Medical Treatments (Innovation) Bill now passes into law.

Driven by an extraordinary two year PR campaign on social media and a supportive newspaper partner, this all started as Lord Saatchi’s Medical Innovation Bill, metamorphosed through several versions, and was resurrected under a new name by Chris Heaton-Harris, before finally clearing its last hurdle in the Lords this week. Both sides of the debate, supporters and opponents, will be claiming some measure of victory, and that is probably the best that could have been expected at this stage. But the Access to Medical Treatments (Innovation) Act that will shortly gain Royal Assent is a very different animal to the Bill Lord Saatchi launched back at the tail end of 2013.

The most dangerous parts have been cut out. It is no longer possible for a doctor to use the Bill to protect herself if she embarks on a treatment that no other doctor would agree was a reasonable course of action, and it thankfully still remains possible for a court to test whether treatment was supportable by other doctors (Bolam) and whether that support was rational (Bolitho). The deletion of the dangerous sections comes as a result of two years of campaigning by Stop the Saatchi Bill, by the medical, legal and patient protection organisations who lined up in opposition, particularly the Royal Colleges, and by some very tenacious politicians from across the spectrum, not least Heidi Alexander, Julian Huppert, Sarah Wollaston and Lord Robert Winston. While claiming to the last that preventing patients seeking redress when they are harmed was not in any way a problem, Chris Heaton-Harris did ultimately bow to overwhelming opposition and follow through on his promise to remove the negligence sections. In the process he removed any lingering trace of Lord Saatchi’s original Medical Innovation Bill. Pretty much the only thing the two Bills now share is the word “Innovation” in the title.

What’s left?

So what are we left with? The Health Secretary now has a power which Section 254 of the Health and Social Care Act (2012) already gave him, to create a database of innovative treatments. It is up to him whether he chooses to do so, but one possible small positive of this law is that it specifies some organisations he must consult in the process, which is perhaps more than the current Health Secretary typically bothers to do when forming health policy. This duty to consult may also set a useful precedent for other databases and information sharing, such as the much-criticised, much-delayed care.data. But that’s the end of the good.

The stolid refusal by the Bill’s creators to define clearly the purpose and use of the database continues to leave it vulnerable to unintended consequences. For example, it is unclear whether doctors will be required to use it, or whether they will be required to record negative results as well as positive ones. This matters, because failure to note negative results is a bit like me telling you I have a coin that always comes up heads, but then not letting you see every coin toss, just some of them that happen to be heads, and not telling you how many I’ve hidden from you. At Second Reading in the Commons, the view was put forward that using a treatment listed in the database could itself be a defence against a claim of negligence. This is worrying, since there is no mechanism specified to ensure the database identifies which treatments are reasonable to try. Coupled with the risk of cherry-picked results, there is still the potential the database could give some comfort to a British Burzynski, operating at the point where personal freedom to choose one’s own treatment tips over into exploitation by the unscrupulous.

I’ve worked with a lot of people who were adamant that a database would solve their problems, even if they couldn’t define exactly what their problems were or how the database could address them. I’ve never seen a data exercise work effectively from such a woolly starting point, but if we are fortunate then the database will be mostly harmless to patients (if time-wasting).

And what of Lord Saatchi? For all his claims to have wanted a database in his Bill, none of the versions he produced or the amendments he put forward actually created it, and it was left to others to put it into effect. But he appears to be happy with the version that has now passed. Hopefully he will now withdraw his own resurrected version of the original Bill, which still awaits debating time in the Lords. I congratulate Lord Saatchi for his success, and hope it gives him the solace that he seeks.

Wasted Years

It has been nearly two years since I first wrote about the Saatchi Bill, and I didn’t for one second think I would still be writing about it now. This time last year I was writing a valedictory post about the end of the original Saatchi Bill; I think we all hope I won’t have to come back again next year to write another. Along the way, I have written countless thousands of words, many of which were published via the Guardian, the Times and Open Democracy, as well as being referenced in many blogs, articles and even a proper academic paper. The Stop the Saatchi Bill campaign won an Ockham award last year; I’m proud of my small part in it, and the friendships formed along the way. Collectively, this group of volunteers managed to stop the most dangerous parts of the Bill. We had no PR experience, no media partner, no paid campaign team, but we had the advantage of some very talented people (a description I do not apply to myself) and the bigger advantage of being right. In the end, by careful analysis and discussion of the statements being made about the Bill we demonstrated that it couldn’t do what was claimed for it, that it would in fact be dangerous, and people listened. In a world where increasingly it seems to be enough to simply assert a lofty goal, without needing to worry whether your plan can actually achieve it, this was a welcome result.

But what a missed opportunity the Saatchi Bill was.

As Andy Lewis points out, this new Act will not advance treatments for cancer (or any other disease) by one inch. If Lord Saatchi had just taken the opportunity to listen to medics, researchers, and legal experts, they would have highlighted for him a whole list of genuine barriers to innovation. Instead, we have wasted countless hours, weeks, months, years while the Saatchi campaign determinedly left no opportunity to do something helpful unmissed. Lord Saatchi clearly wields a great deal of power; it was a source of great regret to see him wield that power in so clumsy a manner. Oh, for even a fraction of Lord Saatchi’s drive, energy and influence, we could have achieved so much.

It wasn’t the PR campaign that pushed the Bill through, or the claimed huge groundswell of public support (which largely evaporated once accurate consultation numbers appeared). It wasn’t the misdirection by the Bill’s campaigners, the misleading statements or the untrue claims regarding its likely effect. In the end it was the simple application of power and privilege and the manipulation of Parliament that got this Bill over the line. Despite stinging criticism by an array of medical and legal experts, patient groups and medical charities, in the end the House of Lords barely glanced at the Bill before passing it. As Saatchi himself said, in the end it only took 30 seconds for him to talk it through.

 Why we fight

Though medical science has made great strides in the past few decades, people are still dying from things we ought to have got better at treating. In the two years since this Bill first surfaced, people have carried on dying. Nothing has been gained from the countless hours spent, the Parliamentary time, the money. We should all have been on the same side.

Towards the tail end of the campaign for this Bill, two people very close to me lost their lives. Both had come to the end of what medical science can currently achieve, and I’m fully aware of the pain that can come from knowing there is nothing else to be done, but desperately trying to will a cure into existence. Every other member of the Stop the Saatchi Bill campaign has experienced this same pain. If I have made any positive contribution as part of this group to protecting patients and their loved ones from the exploitation of their perfectly normal and understandable desperation that the Saatchi Bill would have allowed, then I dedicate it to Richard and David, who contributed so much to making me the person I am. Whether you conclude that is a positive thing is left as an exercise for the reader.

The End

We have to get better at developing new treatments. By thunder we have to get better at this.

One day, it may be possible for politicians to ask the people who actually work in the medical field: what are the problems you face, and how can we help you overcome them?

But it is not this day.

One day, politicians may actually listen to the answers they receive, and thus try to tackle genuine problems rather than imagined ones.

But it is not this day.

One day, politicians, medics, researchers, lawyers, patient groups, charities, and the public, may work together to overcome the barriers to the development and provision of new treatments.

But it is not this day.

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