Lord Saatchi: "To prevent more needless cancer deaths, doctors must be free to innovate"

[MumsnetGuestPosts]

All cancer deaths are wasted deaths.

For many forms of the disease no new treatments have been developed for decades. Treatments remain brutal, painful and often ineffective.

But doctors are forced, by law, to offer only the standard treatments for cancer – or indeed any disease – even when the doctor knows that the patient is dying, and the standard treatment will not help.

We need innovation; we need to try new treatments where the old ones are known to lead only to death. But doctors are hampered by the courts: if doctors don’t follow the standard procedure they could be sued – a risk most are not willing to take. The NHS predicts it will face a bill of up to £24 billion for legal cases in the coming years, and the figure is rising.

And of course, when a doctor is sued - even if they win their case - the stress, isolation and fear they go through can wreck their careers and their lives. This is why most doctors will not offer you anything other than the standard treatment - even if they know it won’t be efficacious. It’s the only safe course for them, legally, and so they are doomed to repeat an endless cycle of failure.

And by this maddening repetition, nothing is gained, nothing new is learned, no lives can be saved the next time round.

This is why I say cancer deaths are wasted deaths: when a patient dies of cancer, medical science is not advanced one inch. No other cancer patient, now or in the future, will benefit, and no lessons will be learned that will improve treatments for others.

But we can change this: we are on the brink of a great medical moment.

I have introduced a Bill into the House of Lords that will, if it becomes law, protect doctors who want to try something new, who do not want to watch their patients dies needlessly. The Saatchi Bill is about creating a movement of patients, like you, to change the law which stops doctors trying new treatments.

First, it means doctors will be protected if they innovate reasonably and carefully. To do so they must of course have patient consent and the agreement of other senior medical experts and practitioners. They cannot go it alone.

But if they get this consent, reasonably and carefully, they can then innovate - safe in the knowledge their lives and livelihoods will not be in jeopardy if the treatment fails.

Second, it will stop maverick doctors from experimenting recklessly on patients. It will, in fact, tighten the law making it much harder for doctors to carry out untested treatments unreasonably.

This Bill is a patients' bill – it's for you and me. With it we can go to our doctors and say: "Have you tried everything? I understand there is a treatment out there that might help – can you try it on me? I have nothing to lose." And the doctor, for the first time ever, will be able to say yes.

But we're not there yet. The Secretary of State for Health, Jeremy Hunt, says he will support the Bill and ensure it becomes law in the next session of Parliament – but only if the public want it and show that they want it, clearly and loudly. In February the Department of Health is launching a public consultation asking if doctors, lawyers and if you – patients and public – support the bill.

We have one shot at it, and one shot only. If we fail, there is no second chance. I ask you to support the Bill, to respond to the consultation - and to ask your doctor, your MP and your friends and families to support it too.

Sign-up here to be the first to hear when the consultation launches. Follow us on Twitter @SaatchiBill and Facebook - and do tell us what you think. Have you wanted different treatment but couldn’t get it? And would you like to see the Bill become law? We’d love to hear from you.

[unadulterateddad]

AIBU to wonder why most of the posters defending Saatchi are 1st time posters????

[IHeartMotherhood]

what difference does it make if we're first time posters - doesn't make our point of view any less valid?

[ShreddedHoops]

Haha unadulterated dad I thought exactly the same.

It's obviously very important to the team behind this that MN are talked round by their own.

Anyway I don't like the sound of it - it smacks of politico speak for something involving markets. Will this result in medics being pressured by drugs companies? Will it result in a slackening of our rightly stringent testing procedures? Anything with 'freedom' in the title usually means the exact opposite in my experience of politics.

And it would only ever be a sharp elbowed middle class (which probably includes me) who would benefit from this. By giving doctors 'freedom to innovate' you are handing huge trust to them to choose treatments which are not properly tested. Long testing periods exist for a reason.

In fact I've got it - this is about making life easier for big pharma, isn't it. Getting rid of necessary steps red tape to allow companies to profit doctors to try new treatments on willing, unpaid patients.

[SunshineOnACrappyDay]

Beautifully put Shredded.

[ShreddedHoops]

And actually, the emotional blackmail in the OP makes me quite angry. It's not sympathy for those of us who have lost loved ones to cancer - it's pulling at heart strings to get us to agree with you. Disgraceful.

[Winterwobbles]

I am a doctor btw, though not an oncologist, though I know many. I absolutely do not recognise the picture this bill presents and struggle to believe oncologists would support it.

[unadulterateddad]

The law as it stands already protects doctors who take reasonable risks with new treatments with informed consent, and I don't know anyone in the clinical negligence field who would consider this a problem.

and I think Shredded has it right

[CMOTDibbler]

Keynes was actually following the radical/super radical mastectomy method, which was based on the 'oncologists following their instinct' method (and with all the best intents of everyone involved), rather than any comparative studies. It was only when Keynes treated inoperable patients with just local radiation he realised they did as well as similar patients operated on, rather than making a big leap. Long term data was what showed this - and trials today such as TARGIT look further at how much treatment women need outside the local area.

[DominicNutt]

Hi, Meditrina. Innovation - new techniques and treatments - can start from random, unrelated discoveries. The lumpectomy - by chance - disproved the theory that all cancers spread 'centrifugally' along channels. It accidentally (and beneficially) proved that cancers spread through the blood stream.

Howdelightful is right to point to Geoffrey Keynes (the brother of the famous economist, Maynard) as an innovator.

In 1922 surgeon Geoffrey Keynes, based at Barts in London, developed the lumpectomy for breast cancer.

He did so in the face of global ridicule and hostility from fellow surgeons. He flew in the face of orthodoxy – and orthodoxy he described as a religion that could not be challenged.

The accepted practice for dealing with breast cancer, developed by the all-powerful diety of surgery William Halsted, a founding father John Hopkins Hospital, Baltimore, was the ‘radical mastectomy.

The eponymous ‘Halsted Procedure’ was revered. This physically deforming operation involved removal of the breast tissue, skin, nipple, axillary lymph nodes and the underlying chest wall muscles. It caused a great deal of psychological upset in many who underwent the procedure.

It was a horrendous.

Keynes – the brother of economist John Maynbestard Keynes – began using local excision and radiation therapy to treat breast cancer. He treated many patients with stage I breast cancer.

More than 70 percent of his patients survived five years, a respectable figure for the times – his survival rates were the same as those patients who underwent the radical Halsted operation. As the sole practitioner of local excision and radiation he was criticized. Indeed the Halsted brethren nicknamed the procedure a ‘lumpectomy’ – a low-minded joke in which the doctor removes a “lump.”

In his autobiography, Keynes wrote, "A built-in dogma of thirty years standing dies hard, and I was regarded with grave disapproval and shaking of heads by the older surgeons of my own hospital."

Perhaps Geoffrey Keynes should be the patron saint of the Saatchi Bill – the man who stood up against an all-powerful medical culture and dared to do better for his patients.

[ShreddedHoops]

[ShreddedHoops]

Over-egging the pudding with that bit about Keynes being the patron saint of this proposal - he'd be turning in his grave at the removal of the checks and balances that make our flawed healthcare system still one to be proud of.

[Winterwobbles]

Hang on a minute - first you're saying you want to give the medical profession more freedom, now you're saying you want to stand up to an 'all powerful medical culture'.
Which is it?

[meditrina]

Keynes was of course working with years of data from clinical trials, such as those performed by McWhirter in Edinburgh. It wasn't blue skies thinking, or "innovation" in isolation. It was careful, research-based work, which rolled out when there was evidence (as CMOT has already posted).

[GoshAnneGorilla]

I think the number of first time posters is hugely suspicious, as is the assumption that no one on Mumsnet is familiar with Good Clinical Practice guidelines, which are the cornerstone of research practice.

I agree with whoever said upthread that there desperately nreds to be more time for clinicians to undertake research, also that oncology patients are generally very well served by research, other patient groups and conditions are considerably less so.

Finally, it is clear we do not yet have the clinical monitoring and whistleblowing procedures in place, within the NHS to protect patients as they should be protected, so I am slightly wary for calls of protecting clinicians from litigation.

[HomeHelpMeGawd]

I'm really quite ... puzzled ... at the use of this phrase in relation to the Bill: "The NHS predicts it will face a bill of up to £24 billion for legal cases in the coming years, and the figure is rising."

The NHS Litigation Authority reports that it has made provision for £9.6bn of known claims and £13.4bn for not-yet-known claims (so £23bn total, but what's a billion between friends?). However I am pretty sure that a vanishingly small amount of legal costs have to do with doctors being sued for prescribing off-label, and an even smaller amount will relate to cancer care. For a start, in the case of cancer, who would be doing the suing? The patients' families? Oncology teams will still obtain written informed consent for an off-label treatment, surely? All the more so, precisely because it is an off-label treatment and they will want everyone to understand the risks and benefits.

Instead, legal costs will mainly relate to maternity cases, personal injury, etc. So wound infections, poorly-managed births, wrong-site surgery etc. Not, by-and-large the use of off-label oncology treatments.

This dubious conflation makes me very skeptical about the entire argument.

[TheSporkforeatingkyriarchy]

sb1970 I'm sorry for your loss, we have a similar tale going on now with my partner's brother and almost everyone we come across - lack of action (often proceeded by repeated delays and broken promises) causing painful horrible end of life experiences which could at least have been made more comfortable. I've come across many who think refusal to act and delays should be accounted for in such cases just as much as operation deaths.

We need to encourage action, I don't think this bill is it.

[NightLark]

I think conflating innovation with the idea of cure (setting it against deaths rather than pain, quality of life or any other outcome) is terribly misleading.

Most innovative treatments that I am aware of offer tiny benefits, (days or weeks of average increase in life expectancy), not a cure or a relief from symptoms. And at immense cost. And with a sizeable quota of side effects.

I think this bill is pointless, and could be genuinely harmful when considering the vulnerability of a group in such dire circumstances and the possibility of untested treatments being offered.

I also find it bizarre that the two treatments offered up as evidence for innovation come from the 1930's/40's - have organised trials and the rise of evidence based medicine not filled the gap providing space for innovation with scientific backing since then?

[SunshineOnACrappyDay]

I've asked MNHQ to have a look at this thread, given the unusually high number of first timers.

[motherinferior]

And I'm also unclear about how it would actually work. Clinicians are horribly familiar with someone saying "but I read about this treatment, doctor, can't I have it?" and having to explain that actually, this treatment was a research trial that may, just may, be translatable into clinical benefit further down the line.

(And do please stop patronising us with the idea that if you tell us more stories about cancer, we'll comply. We know just how horrible cancer is. That's not the point.)

[LizScarff]

My name is Liz and I work as part of the Saatchi Bill team. Firstly thank you very much for all the questions – it’s great to see so many people responding to the guest post.

I should also apologise as both myself and Dominic Nutt have posted responses on this thread, we both work for the Saatchi Bill team and should have made that clear up front.

Mumsnet HQ have encouraged us to respond to all your questions on this thread.

I’ll respond to each of the questions individually – otherwise this post will get a bit long. So apologies for the multiple replies to follow but I want to make sure that we answer everything.

Please do let us know if there are any further questions – we are very happy to respond and debate.

You can find a full FAQ on our website here: bit.ly/1dLI853

A guide to the Bill: bit.ly/1a8QEq8

Here are some links to press coverage which will also give more info:

Newsnight: www.bbc.co.uk/news/uk-politics-20595843

Telegraph: www.telegraph.co.uk/health/10069585/15000-people-die-every-year-because-of-cancer-treatments-Lord-Saatchi-says.html

Telegraph: www.telegraph.co.uk/health/9733286/The-fear-of-being-sued-is-ruining-modern-medicine.html

[LizScarff]

CMOTDibbler, scaevola, AliceinWinterWonderland,

Thank you for the points you raise. To answer your questions:

Will patients be used a guinea pigs?

No, absolutely not. The doctor must get consent and agreement from fellow experts AND consent from the patient. The barrier to offering new treatments will be higher than it is now. It is easier to treat patients as guinea pigs now, than it will be after the Bill becomes law.

How will the Bill actually work?

It sets down a process by which a doctor can safely innovate. The doctor must get sign off from a panel of other medical specialists and from the patient. They must document the process. It is designed to be used when it is known that standard procedures are not working for the patient and the patient and his or her doctor want to try something new. If the outcomes are successful, then all is well. If the outcomes are not successful, the doctor will know that he or she will be protected if the case goes to the courts.

[LizScarff]

WhiskeyTangoFoxtrot

Thank you for your comment: ‘ Patients already need to consent to any/all forms of treatment. And serious researchers will already do bring 'novel' treatments to patients. This 'hands are tied' business is far from the truth.’

So why do we need this Bill?
There is a lot of talk about breakthroughs in curing cancer and other diseases. But a brief look at the reality beneath the headlines tells a different story.
It is true there have been big breakthroughs; diagnoses of childhood leukemia or breast cancer, for example, are no longer the near-certain death sentences they used to be.
But in many – in fact most – cancers, too little progress has been made in recent decades.
For many cancers, there are no treatments available other than surgery – no drugs, no chemotherapy, nothing.
For others, such as the ovarian cancers, there has been no therapeutic development for decades, and what treatments are available are, as Maurice Saatchi describes them, “medieval, degrading and ineffective.”
We need more progress. We need doctors who are creative and innovative who are ready to try new ideas and make things happen – to innovate.
But there is a problem. Defensive medicine is increasingly putting a brake on medical advances. The law is stacked against the doctor who, in the interests of the patient, tries something new. Such a doctor faces a greater chance of being sued and losing his or her livelihood and reputation.
At the same time, the law fails to protect patients adequately against the maverick doctor who recklessly experiments on his or her patients.
The Medical Innovation Bill will clarify the laws that govern medical negligence cases. It will protect the good doctor who innovates sensibly in the interests of patients, and, at the same time isolate the negligent, reckless doctor.

[LizScarff]

Winterwobbles @CMOTDibbler Thank you for your comments. You highlighted research trials and ethical approvals.

So will this Bill remove or replace current checks and balances and stringent testing procedure already in place?

No. There are a host of regulators and laws which govern medical practice. This Bill will clarify a currently complex area of law so that judges, doctors and patients will know, clearly, that a doctor is proceeding carefully and sensibly, or is being reckless.

[LizScarff]

paintyfinger

Your point is a good one – and speaks to the heart of the Bill:

Why can’t doctors innovate at the moment?
They can. But it is a high-risk enterprise, which many doctors seek to avoid. There is a culture in the NHS that drives clinicians to stick to what are known as ‘standard procedures’. These are the proscribed norms of practice for any given illness. Sticking to these gives the clinician protection in law in the event of a negligence claim - irrespective of whether the standard procedures are effective or not. So, a doctor who follows the standard procedures for, say, late stage ovarian cancer will be protected by the law, even if, as is likely, his or her patient dies.
A doctor who, knowing his patient has little chance of survival, tries something new, even with the patient’s permission, has a far greater chance of losing a legal battle if the patient or their family decides to sue. So, why try something new? Why innovate – when it is safer to stick to the well – worn path, even when that path leads to the death of the patient?
If Doctors were able to innovate in the past and the law hasn’t changed, what has and why do we now need the Bill?
We have become more litigious. In the past four years the amount of money paid out by the NHS for medical negligence claims has doubled, reaching £1.2 billion in the last financial year.
And by the NHS’ own calculation on cases stacked against it pending court decisions, the NHS faces a bill of £19b – these are cases the NHS thinks it will lose in the coming years.
In these circumstances, doctors and hospital managers are less likely to step outside the standard procedures and try to find better ways to treat patients. The law doesn’t protect them.
This builds a deep culture of defensive medicine, such that innovation is not even considered as an option in many cases. Doctors become so used to standard procedures, they may not even think to push beyond failed standard procedures.
Of course, innovation happens. But the culture of innovation is dying. This law will encourage it and protect those who innovate sensibly.