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.

[LizScarff]

Joanofarchitrave

Thank you for your comment. You questioned who supports the Bill?
We have been working hard, though quietly, to gain support from legal and medical experts and leaders. Today, we can confidently say we have support from many leading doctors and scientists across the country. We have also tested the Bill on some of the UK’s most senior legal experts, and they have stated that they understand the need for legal clarity in cases where doctors seek to innovate – and that this Bill provides that clarity. They conclude that the Bill will support sensible innovation, while protecting patients.
We have also canvassed support from politicians from both sides of the House.
We have also received many letters from the public supporting the Bill.
We are pulling a list together of comments from those who do support the Bill, both professional and patients, and would be very happy to share it here.

[LizScarff]

ShreddedHoops
Thank you for your comments. Hopefully some of the above answers will have addressed your questions. But to answer the question of will pharma benefit the answer is a firm no. The Bill does not have any direct effect on how big pharma operates.

Will the Bill result in medics being pressured by drugs companies?

No. The Bill will not change how pharma relates to doctors in any way.

[LizScarff]

HomeHelpMeGawd Thank you for your comment. You highlighted the litigation question.

A culture of defensive medicine has slowed down innovation in the UK and elsewhere. Last year the NHS paid out £1.2billion in compensation - a figure which has doubled in the past four years. And the NHS estimates it will pay out a staggering £24 billion in compensation for cases currently in the pipeline - that's half the UK defence budget. This bill is not designed to stop patients suing doctors who perform badly. Indeed much compensation goes on cases such as disabilities resulting in problems which occur in childbirth, for example. However, the increase in payouts has made hospital trusts increasingly risk averse across the board, the NHS Litigation Authority has told us. It creates a culture of super-conservatism and is one reason why hospital trusts and doctors are nervous of trying anything new - in case it goes wrong. This aversion to risk, in cases where patients are dying, has had a detrimental affect on innovation.

[LizScarff]

Thank you once again to everybody who has left comments and questions. Apologies again for the multiple replies, we wanted to address everything and Mumsnet HQ advised us to post individual responses.

Please do let us know if there are any further questions, both myself and Dom will be very pleased to answer them.

Have a lovely evening,

Liz

[LizScarff]

PS: here is a link to the statement from Jeremy Hunt on the Bill:

www.parliament.uk/documents/commons-vote-office/November-2013/22-Nov-2013/4.HEALTH-Medical-Innovation-Bill.pdf

[ShreddedHoops]

Thank you for your responses. I am a annoyed that MN would consider banning a regular poster for sockpuppeting in the way that you and your colleagues have done on this thread, whereas it's ok for politicians to disguise their allegiance?

Anyway. You say that the bill would not affect how pharma relates to doctors. How can that be true? Pharma run drugs trials - there is then a load of red tape and hoops to jump through before doctors can use new drugs - you want doctors to be able to use new treatments faster than they currently are able. This means that the arms' length relationship must be shortened, no? How do you expect doctors to 'innovate' exactly? Homeopathy? Or treatments which have gone through the current arduous testing and passed? Because the latter are already available to doctors. I don't expect the doctor treating me to innovate, tbh. I expect him to have access and information about properly tested treatments. He is not qualified, able, justified or allowed to test new treatments on me or anyone else. That is the job of medical research. Or am I missing a vital point here?

[ShreddedHoops]

Actually - can you just define 'innovate' in the context of this bill? Maybe I've seen the word too many times and it's stopped making sense, but I don't understand why doctors innovating is a good thing, tbh.

[Winterwobbles]

I'll read it too. In the meantime, how will this not increase rather than decrease the risk of litigation? To give an example, my colleague spent several years going through various complaints and was nearly sued by a family of a patient he had been treating.
The opinion of the coroner, the ombudsman and expert witness was that the care he provided was entirely reasonable and good. The family's expert witness (who had reasons for being biased) suggested an unproven treatment might have helped. All the available research and the NICE guidelines published after the case suggested there was absolutely no evidence for this proposed treatment and a lot if potential harms. It took years of stress and a great deal of taxpayers money to defend however.
More importantly, the family will forever feel that something more could have been done despite the fact there is absolutely no evidence for it.
There was never any fear about being sued for using the unproven treatment - my colleague did not want to use it for fear of causing unnecessary harm to the patient.
How will this bill not make this kind of scenario worse by introducing a kind if respectability for introducing treatments contrary to evidence based medicine?

[WhiskyTangoFoxtrot]

As the Medicines Act 1968 and (recently) the Human Medicnes Regualtions 2012 mean that unlicensed medicines can be used totally legally here, then this must be refering to items not yet even in production. So still in trials and requiring test subjects?

Well that's legal here too (browse Cancer UK pages or just google for trials on the terminally ill for examples).

What types of "innovation" aren't currently legal? The reckless.

Any others?

[HomeHelpMeGawd]

LizScarff. I think you are taken in by your own rhetoric.

What is the evidence to justify your assertion that "A culture of defensive medicine has slowed down innovation in the UK and elsewhere." beyond "NHSLA told us so"? (and based on what's happened here, I am more than slightly dubious about whether you asked them leading questions and in a way that disguised your intent).

I would like to see some actual facts that show that the UK has a culture of defensive medicine, and that there is a causal link between this and the rate of innovation, and that demonstrates that the rate of innovation has slowed. On the last point, I would like to know what you know that Vinod Khosla and many other respected commentators don't, because they all say that the rate of medical innovation is picking up, not slowing down. For example, the impact of big data; the rise of devices such as Proteus's ingestible pills; consumer-based digital health; value-based reengineering of clinical protocols in India, Brazil, etc etc. So it would be quite helpful to your cause if you could quote a senior figure from a reputable organisation, such as Stian Westlake from NESTA, agreeing with what you say on medical innovation. Because what you say has a lovely ring to it, but no apparent connection with facts.

And repeating that the NHS pays out lots in compensation is a complete red herring. How much has the NHS paid out in compensation for research-related mishaps? Why would a clinical oncologist or a nuclear medicine doctor change their attitudes to research depending on maternity litigation figures? And why do you persist in quoting a total future expenditure figure and comparing to an annual spend? £24bn over 15 years is more like 1.5% of the NHS's budget. Too much, but a damn sight less than the hair-raising figures you're quoting. You're being disingenuous.

So, in summary, it would be good to see some actual facts to back up your assertion that there is a problem here.

[Hellenbach]

I am deeply suspicious of the true motivation behind this Bill.
My DH has a ten year history of cancer. We have seen first hand how quickly new, innovative, treatments have come into mainstream medicine.
In fact my husband wouldn't be here without some pretty amazing drugs he takes now which didn't exist a few years ago.
His consultant has tried his best to persuade our local PCT to fund drugs which aren't necessarily licensed for this type of cancer but to no avail. This is where the problem lies.
Top consultants willing to 'innovate' but prevented by funding streams.
Don't even get me started on rare cancer funding!

[HomeHelpMeGawd]

Hellenbach:
www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/cancer-drugs-fund

Nothing similar exists for any other disease area, by the way.

[Winterwobbles]

Oh I quite like wombles :)
I have some contact with oncologists though I am not one. I was at an oncology ward round last week in fact. All new patients were discussed within the local MDT and any even slightly unusual treatments or patients with unusual cancers were discussed via video conference with a regional MDT. I'm not convinced that any patients are just treated by one clinician acting on their own. Maybe in the private sector - I don't know.
MDTs are useful to pool knowledge of latest treatments, research, trials and yes, expert experience. They are a good way to ensure high quality care and are standard practice in my experience.
Just trying to get the toddler to see that it is way past bedtime but will be back later.

[joanofarchitrave]

I don't feel that I did exactly ask 'who supports the Bill' - I said that I would like to hear more detail from oncologists who support the Bill, but actually any consultant in any specialty would be fine, explaining what treatments they have been prevented from recommending by the fear of being sued.

I also asked about who would pay for the extra MDT time and whether putting resources into unresearched treatments in this way would affect funding of research into early identification of disease. Because, for ovarian cancer in particular, that feels like an area which is crying out for research.

If openness and honesty is the aim, my suggestion would be to start as you mean to go on and declare an interest in the Bill if you have one. It is not encouraging that those promoting the Bill haven't done that as a matter of course.

[Winterwobbles]

Well, I can answer from a different specialty Joan.

How many times have I felt prevented from giving an 'innovative'/ non evidenced treatment for fear of being sued? - 0. We have mechanisms in place to allow that if my expert view is that it is worth a shot.
How many times have I not given an unproven non evidenced based treatment/intervention that I fear would cause more harm but that the patient requests and feared whether I might have to face litigation for that decision? - More times than I can count.

[joanofarchitrave]

Thank you Winterwobbles.

[LizScarff]

Thank you all for your interest and further comments. I’ll address your individual questions below. As requested we, that is Dom Nutt (Saatchi Bill team member) and I, have also pulled together some quotes from various people who support the Bill. I’ll post them below too.

It’s great to see such a lively debate on the Bill. We would like to extend an invitation to all Mumsnetters to attend a special briefing on the Bill where we can answer all and every question on the Bill in person. If you would be interested in attending please do email me on liz at fieldcraftstudios.com

With thanks, Liz

[LizScarff]

As requested: quotes of support for the Bill:

Lord Woolf: Former Master of the Roles and Lord Chief Justice:

[The Bill] could give confidence to medical practitioners engaged in the field of treatment of cancer that in appropriate circumstances they could safely recommend and implement a course of treatment, or non-treatment , which some, or indeed the majority of their professional colleagues, might regard as unorthodox.

I have come to this conclusion because it is, in my view, undoubtedly the case that there is insufficient certainty as to the course which courts will adopt in this country at the present time when faced with an allegation that a medical practitioner's treatment of a patient was inappropriate because of its innovative nature.

[There is] a risk that the present state of the law could inhibit the proper development of treatment of particular cancers.

Any way of avoiding this by legislation, in my opinion, should be welcomed. I would therefore hope that in the Lords, at any rate, your Bill will be well received.

Prof Angus Dalgleish
Professor of Oncology at the University of London and Principal of the Cancer Vaccine Institute

"I completely support this bill having recommended logical treatments to cancer patients who have run out of standard
options. Patients have asked me whether other treatments would be worth trying. They then often report that in spite a logical request, local doctors are frightened to prescribe off label [prescribing drugs designed for one cancer on another form of cancer] for fear of falling foul of management or getting reported to the GMC.

"Readers should be aware that in the US, 80% of cancer drugs are prescribed off label.

"I have seen on many occasions when patients with no other options left, have benefited dramatically from using such drugs off label, and note at low doses the toxicity or harmful effects are minimal. One example was a 63 year old man with metastatic prostate cancer who had severe disease throughout his body. He had had all the normal hormone therapies available as well as chemotherapy. He was keen to try anything at all and we agreed that he try a drug licensed at a high dose for another condition which I had become aware was very anti inflammatory and immune stimulating at low non-toxic doses. Even though his other doctors thought he was terminal, he had a marked clinical response with a marked drop in his PSA levels and survived for 3 years dying not from his disease but due to the indirect chronic effects of his previous therapies. The drug was completely side-effect free."

Dr Henrietta Morton-King – junior doctor
"I recently asked the medical registrar at my hospital what she thought was limiting the NHS in terms of innovation.
Her first words were "will my ass gets sued"? Fear of being sued is the new bogeyman. Being sued is never fun but for doctors the process is famously slow and mentally gruelling.

"You are often suspended pending investigation. This creates havoc in finances and family life.

"Medical defence lawyers speak of routinely having their clients on suicide watch – even if, as in most cases, the doctor is innocent.

"Alas today the NHS itself is a barrier to innovation and reform. Until there is sufficient protection in place for both doctors and willing patients, patients with rarer diseases will be left out in the cold."

[LizScarff]

@ShreddedHoops:
Innovation takes many forms - including not treating at all. Certainly not all innovation relates to drugs or drugs trials. Every time a surgeon tries something new, it is innovation, that runs counter to standard procedure. By definition, new surgery cannot be tested in a human trial.

Innovation, in the context of the Bill is defined as any new procedure, including the decision not to intervene, that falls outside standard procedure.

Those of us working on the Bill are not politicians and Lord Saatchi is, in this context, a husband who has lost his wife to cancer and has the means and motivation to challenge the status quo. He is supported by patients and by MPs and Peers of all parties and none.