Tag Archives: rare diseases

Amendments to be moved on report – 12th December 2014

Following the Committee Stage in the House of Lords on 24th October Lord Saatchi has tabled a set of amendments to be considered on Report on 12th December.

The amendments were prepared by the Department of Health  to respond to concerns raised by peers and others at and around the Committee Stage.

We are very grateful for all the input we have received.

The Bill is going through the usual Parliamentary process and amendments are part of that process.

→READ: The Bill has been amended many times. Why?

→READ: Download the amendments on the Parliament website.

The following explanatory notes have been prepared by parliamentary draftsman Daniel Greenberg.

MEDICAL INNOVATION BILL [HL] EXPLANATORY NOTES TO AMENDMENTS FOR REPORT TABLED BY LORD SAATCHI
ON WEDNESDAY 3
rd DECEMBER 2014

Introduction

  1. On 3rd December 2014 Lord Saatchi tabled a set of amendments to his Medical Innovation Bill to be considered on Report on 12th December.
  2. The amendments were prepared by the Department for Health to respond to concerns raised by peers and others at and around the Committee Stage.
  3. These Notes explain the manner in which the amendments meet the concerns expressed.

Transparency: patients’ notes; and recording outcome of consultation

  1. Some peers wanted details of decisions to innovate to be recorded in patients’ notes.
  2. Peers and others have also expressed a wish to see greater transparency about the nature of responses received by the doctor when undertaking the consultation with colleagues required by clause 1(3)(a) and (b).
  3. Amendment 1 requires the results of the consultation to be recorded in the patient’s notes, together with details of the doctor’s decision to innovate.
  4. There has also been pressure to turn the requirement to consult colleagues into a requirement to obtain colleagues’ written consent. These amendments do not give effect to that suggestion. Senior doctors consulted by Lord Saatchi expressed concern about giving formal written consent to another doctor’s proposed course of treatment, without knowing the full history and other circumstances, while they would be relaxed about expressing a view of the soundness of the doctor’s proposal as described to them. Lawyers consulted were also concerned about a possible new form of legal liability for consenting doctors. The requirement to record views in the patient’s notes should introduce the necessary formality, transparency and accountability, while avoiding both of these objections.

Preservation of existing law about clinical trials and other forms of research

  1. It has always been the intention of the Bill to make no change of the law relating to research (see clause 1(5)). But concerns were expressed that this needs to be made even clearer.
  2. Amendments 2 and 3 are designed to put the point beyond possible doubt.

Exclusion of cosmetic surgery

  1. At the Committee Stage and elsewhere suggestions have been made that the Bill should be confined expressly to the principal kinds of case at which it is aimed, namely relatively rare terminal cancers and other terminal conditions.
  2. Lord Saatchi has reconsidered attempting to define the intended scope of the Bill, but has found it impossible to do so in a way that answers more questions than it raises.
  3. Much of the concern has centred around the potential use of the Bill in relation to cosmetic surgery, and it was suggested that it could at least be made clear that it is not the purpose of the Bill to apply to that.

13. Amendment 4 accordingly excludes cosmetic surgery from the Bill. (Cosmetic surgery can of course in some cases be crucial to life or quality of life – as in the case of severe burns; doctors wishing to innovate in such cases will be able to rely on the existing common law Bolam test.)

Emergency treatment; and preservation of common law

14. Concern has been expressed whether in emergency situations doctors will realise that they are not expected to follow the procedures set out in the Bill.

15. Amendment 5 accordingly introduces a reference to emergencies, as an example of a situation in which the existing common law Bolam test would apply and a doctor might not engage the procedures in the Bill.

16. Amendment 6 recasts the principle that the Bill does not force doctors to rely on its procedures and that they can simply rely on the existing Bolam test in all cases. The new form is designed to meet concerns expressed as to whether the intention of existing clause 2(2)(a) was sufficiently clear.

17. Amendment 7 is a consequential amendment to reflect the numbering changes effected by Amendment 5.

Daniel Greenberg 3rd December 2014 

 

Guardian: Lord Saatchi responds to the Times letter

Lord Saatchi Guardian

Published in the Guardian 14th November 2014

The 100 doctors who wrote to the Times rubbishing my medical innovation bill are the authentic voice of complacency. Let us help them to move on

Writes Lord Saatchi

How many of the 300,000 British citizens diagnosed with cancer this year will receive an innovative treatment?

The answer, according to the awesome House of Lords Library, is 5.6%. In other words, 94.4% of Britain’s cancer patients will receive only the standard procedure. In the endless repetition of a failed experiment, 165,000 of them will die. You would need a fleet of JCB’s biggest excavators to dig the mass grave for this year’s cancer dead.

This is why I proposed the medical innovation bill, which is now before parliament. If passed, it will allow doctors to try reasonable innovative treatments, so long as they have the agreement of the patient (or patient’s representative) and of a panel of medical specialists.

The bill has the support of No 10, the secretary of state for health, the UK chief medical officer, the government’s chief scientific adviser, the medical director of the NHS, Britain’s top judges and 20,000 respondents to the government’s public consultation on the bill. But it is opposed by 100 doctors, who wrote a letter to the Times this week [paywalled link] saying the bill is rubbish.

How I pity their patients.

Theirs is the authentic voice of complacency and self-satisfaction, as in one of their quotes: “It is time that people listened to the experts.” These doctors sound like Lady Ludlow in Elizabeth Gaskell’s novel Cranford. She objected to the education of poor people on the grounds that “it is becoming common for the lowest class to have some education … the proper order of the world will be undone.” The doctors may not have realised that the age of deference is over – not just in medicine but in politics and all walks of life.

The “Times 100” insist that the only method of scientific advance is the clinical trial. Perhaps they overlooked the view of the forefather of the randomised controlled trial, Sir Austin Bradford Hill, who said: “Any belief that the controlled trial is the only way [to study therapeutic efficacy] would mean not that the pendulum had swung too far, but that it had come right off its hook”. Or maybe they missed the view of Professor Sir John Bell, regius professor of medicine at Oxford, who says there will be no cure for cancer “until real doctors with real patients in real hospitals can attempt an innovation”.

What sort of people do these 100 people think we are? Are we downstairs in Downton? Are we supposed to doff our cloth caps as these doctors go past us in Harley Street in their horse-drawn carriages?

They are living in another era. Our iPads can follow the proceedings of the American Society of Clinical Oncology conference in Melbourne at the same time as they do.

Let us help them to move on. In the modern era, any half-decent protest movement such as theirs needs a logo. They say a picture tells a thousand words, so here is their picture – a shrug of the shoulders.

They need a good simple “narrative” that gets to the essence of what they are saying. Here it is: “Save the status quo!”

That slogan will look good on a poster. Let them put it up in Britain’s hospices, where 80% of the patients – with a life expectancy of two weeks – are dying of cancer.

The Times: Medical innovation that does no harm should be encouraged

 

By David Pannick QC

Published in The Times, 30th October 2014

Lord Saatchi’s Medical Innovation Bill completed its committee stage in the House of Lords last Friday. It has government support and so may become law before the end of this parliament next May. The bill could have a positive effect — though not as substantial as its supporters claim — and it contains (or will contain, with further amendments) sufficient protections to prevent it causing harm. It therefore deserves lukewarm support. The bill says that its purpose is “to encourage responsible innovation in medical treatment”. It provides that it is not negligent for a doctor to depart from the existing range of accepted medical treatments if the decision to do so is taken “responsibly”.

For the purposes of taking a responsible decision, the doctor must, in particular, obtain and take account of the views of one or more appropriately qualified doctors in relation to the proposed treatment, and consider the risks and benefits of that treatment, having regard to other available options.

This adds very little to the existing law. The common law test was stated by Mr Justice McNair in the Bolam case in 1957. A doctor is not guilty of negligence “if he has acted in accordance with a practice accepted as proper by a responsible body of medical men skilled in that particular art”. In the Sidaway case in 1985, Lord Diplock emphasised that because the state of medical knowledge is not, and should not be, stagnant, the Bolam test does not require the doctor to follow the most orthodox approach: “there may be a number of different practices” that satisfy the test at any particular time.

The courts apply the Bolam criteria in a liberal manner in the interests of patients. Typical is the Judgment of Dame Elizabeth Butler-Sloss, as president of the family division, in the Simms case in 2002: she approved innovative treatment for two incapacitated patients suffering from brain disease. The treatment was “untried” with “no validation of the experimental work done in Japan”. But, she noted, there was responsible medical opinion in favour of trying the treatment. As she explained, the Bolam test should not be applied in such a way that “no innovative work such as the use of penicillin or performing heart transplant surgery would ever be attempted”.

In practice, doctors do already innovate in the interests of their patients, as Lords Winston and Turnberg, with their decades of medical experience, explained during the committee stage debate.

Lord Saatchi believes that the fear of litigation is holding back innovation in the treatment of cancer and other diseases and so a new statute would have a positive effect. But there is little evidence to suggest that the law, rather than lack of funding or excessive bureaucracy, is currently a problem in this context.

So this bill is itself not much of an innovation. Its main effect, as Earl Howe, the health minister, explained last Friday, would be to “bring forward the Bolam test to before treatment is carried out”, while preserving the common law rule for doctors who do not follow the procedures in the bill.

It is possible, though unlikely, that these new provisions will make a difference by encouraging otherwise timid doctors to innovate. It is a legitimate OBJECT of legislation to promote innovation, which is desperately needed in combating cancer. Parliament does not subscribe to the views of Sam Goldwyn, the film producer (as expressed in a pre-Twitter age): “messages should be delivered by Western Union”.

The crucial question, then, is whether the bill will offend against the basic principle of medical ethics recognised by Florence Nightingale as “the first requirement in a hospital”: it “should do the sick no harm”. The bill only applies to “responsible” innovation, which the law confines to reasonable treatment backed by a body of medical opinion. This excludes quacks. But there are important questions still to be decided at report stage.

At present, the bill applies to all medical treatment. But should the law be encouraging innovation in, for example, cosmetic surgery? A way forward would be to empower the secretary of state to prescribe excluded areas of treatment. A further defect is that the bill currently contains no requirement that those carrying out innovative treatment must record it on the patient’s notes or in a public register.

If we are to learn from the success, and more often regrettable failures, of medical trials, information needs to be recorded and shared. A third concern is that a bill which is said to be necessary to provide legal certainty for doctors in the interests of patients contains no provision safeguarding doctors who decline to innovate. The bill needs to state that a doctor is not obliged to innovate if he or she considers that to be contrary to the best interests of the patient.

The author is a practising barrister at Blackstone Chambers in the Temple, a Fellow of All Souls College, Oxford, and a crossbench peer in the House of Lords.

Telegraph: If it works for Ebola, it can work for cancer

Read the article in the Telegraph
Read the article in the Telegraph

In the Telegraph today Lord Saatchi writes: ‘If it works for Ebola, it can work for cancer’

How do the conditions imposed by the WHO on ZMapp compare with the conditions set in the Medical Innovation Bill?

Read the article in the Telegraph 

It is hard, when confronted with pictures and reports detailing the Ebola outbreak in Africa, not to shake one’s head in pity. What medical facilities there are, we hear, are overwhelmed by the scale of it. So it is extraordinary to learn that Liberians dying of Ebola have better access to groundbreaking, potentially life-saving new treatments than do people dying of cancer here in Britain.

The Ebola treatment in question is ZMapp, an experimental serum which has not been tested on humans in medical trials, but was none the less given to two American doctors – Kent Brantly and Nancy Writebol – who were infected while working in Liberia. Both have now made a full recovery. Three infected African medics who have received ZMapp in Liberia are also reportedly doing well. Now a British doctor, infected with Ebola while working in Sierra Leone, is to be returned to this country for treatment at the Royal Free Hospital in north London.

The reason that such patients are able to receive ZMapp is because an ethics panel at the World Health Organisation has decided that, given the magnitude of the Ebola outbreak, a departure from standard evidence-based treatments is justified. Potential treatments that have shown promising results in the laboratory but have not been evaluated for safety and efficacy in humans are, in certain conditions, now acceptable on both ethical and evidential grounds, the WHO says.

Few doubt that the gravity of this outbreak of Ebola, which has killed about 1,500 so far, requires a response by all means necessary. Yet in Britain today the toll of another disease – cancer – is 100 times higher, and access to such experimental treatments is not available, even for those desperate patients beyond the help of current medicine.

Some 150,000 British citizens will die from cancer this year, making it the number one cause of untimely death. And while the disease may have a different name, our response should be the same as with Ebola – doctors should be encouraged to try new treatments, and be protected when they do so. Importantly, the Medical Innovation Bill, now before Parliament, will allow doctors and their patients in Britain to try treatments that have not been tested or fully trialled.

Inevitably, there are objections that the Bill’s restrictions and conditions placed on doctors are too lax – that they can play fast and loose with vulnerable, dying patients. So it’s worth looking at the conditions imposed by the WHO on ZMapp to see how they compare with the conditions set in the Medical Innovation Bill.

First: lethality. On Ebola, the WHO panel agreed that the threat posed by Ebola, with its “high case-fatality rate” was sufficient to warrant the use of experimental therapies. The Medical Innovation Bill is explicitly designed to achieve the very same result. This is why the Health Secretary, Jeremy Hunt, said about the Bill that “the Government should do whatever is needed to remove barriers that prevent innovation which can save and improve lives. We must create a climate where clinical pioneers have the freedom to make breakthroughs in treatment.” The Secretary of State wisely asked Sir Bruce Keogh, the medical director of the NHS, to devise the legislative safeguards to be included in the Bill.

Secondly, ethics: the WHO rightly sets a high ethical standard for use of ZMapp, including “transparency about all aspects of care, informed consent, freedom of choice, confidentiality, respect for the person, preservation of dignity and involvement of the community”. The Bill echoes this ethical standard, requiring informed consent of the patient, or the patient’s representative, and full transparency. Indeed, the Bill goes further than the WHO guidelines, stating that in order to depart from the existing range of accepted medical treatments, a doctor must also obtain the views of at least one other relevantly qualified doctor, carry out a full risk assessment, and obtain any other consents required by law.

And, of course, while the WHO offers guidelines, the Medical Innovation Bill is backed by the full force of the law.

Finally, WHO guidance requires that all data generated by the use of ZMapp should be collected and shared. If scientific progress is to be made through such experimental use of untested treatments, results must be available to the scientific community. The Bill will secure this. The University of Oxford has offered to create a database to register innovative medical interventions under the Bill and to collect and share the data from them, so that they may inform and inspire clinical trials. As Sir John Bell, Regis Professor of Medicine at Oxford, said: “There will be no cure for cancer until real doctors with real patients in real hospitals are allowed to innovate.”

So those of us who have cheered the use of an untested drug to help apparently hopeless cases in Liberia should cheer the Medical Innovation Bill. It will help medical science progress, aid researchers in their hunt for cures for fatal diseases – and offer hope to the 300,000 Britons who will be diagnosed with cancer this year.

Read the article in the Telegraph 

BBC Radio 4 Today: Sir Mike Rawlins, President of Royal Society of Medicine talks about the new Medical Innovation Bill

Medical Innovation Bill - Saatchi Bill - Sir Mike Rawlins talk to BBC 4 Today
Medical Innovation Bill – Saatchi Bill – Sir Mike Rawlins talk to BBC 4 Today

Sir Michael Rawlins, President of the Royal Society of Medicine and former Chairman of NICE has this morning spoken with BBC Radio 4 Today program about the new version of the Medical Innovation Bill (Saatchi Bill).

Listen to his interview.

Telegraph: The fear of being sued is ruining modern medicine by Dr Max Pemberton

Dr Max Pemberton writes about why he supports Maurice Saatchi’s Medical Innovation Bill in the Telegraph.

Telegraph

By doctor and Telegraph journalist Max Pemberton

Published 9th December 2012

Read in the Telegraph.

Doctors are too scared to deviate from evidence-based medicine and innovation is being stifled.

In recent years there has been a seismic shift in the way that doctors practise. The mantra that young, fledgling doctors repeat to themselves endlessly is “evidence-based practice”. On the face of it, this seems sensible. Of course doctors should only prescribe or recommend treatments for which there is a clear, empirical evidence base. Modern medicine is founded on the principles of scientific inquiry; a hypothesis is put forward, tested and proved or disproved. But, as any doctor will tell you, in real life things are a lot messier than that, and nowhere more so than in cancer management.

Here, evidence is not always as clear and decisive as we would wish it to be. When I worked on a paediatric cancer ward a few years ago, I remember being struck by how little evidence was available to support many of the treatments that were at the clinicians’ disposal. While evidence-based practice is noble in theory, in reality, it’s simply not always realistic, given the complex nature of cancer when its multiple variables, contributing factors and idiosyncrasies are taken into account. This is what makes medicine as much an art as a science.

But worryingly, while doctors know that evidence-based medicine is not always the best choice for treating their patients, they have, in recent years, become increasingly scared of deviating from the standard treatments available to them, even if these don’t appear to be working. One man is trying to change this. Maurice Saatchi, the advertising guru who sits in the House of Lords, last week launched his Medical Innovation Bill, with the specific aim of changing the current culture within medicine that makes doctors fearful of the new and untested. I give it my wholehearted support because I despair at the way medicine is heading.

It’s a tragic indictment of modern medicine that too often innovation is jettisoned in favour of the status quo – not because it’s in the patient’s best interest, but because of the fear of being sued. This defensive medicine is at the heart of so much clinical practice now. Several factors have coalesced to create an environment whereby evidence-based medicine is something to hide behind, rather than simply a gold standard to inform decision-making.

The seeds of this defensiveness were sown in the medical profession’s consciousness following the fall-out from the Harold Shipman case. One of the unintended consequences of the regulation that came in as a result was that, suddenly, doctors and what they did for their patients was under incredible scrutiny. It was no longer assumed that the doctor would, de facto, have the patient’s best interests at heart. The authorities became increasingly suspicious of doctors and what they got up to behind the closed doors of their surgeries. A culture of fear crept into the medical profession. This was against the backdrop of the insidious creep of the compensation culture and the rise of the no-win no-fee lawyer.

Also, as hospitals have become run increasingly like businesses, so a new ruling class has emerged from within health care – the managers. They tend to be wary of any innovation or deviation from protocol that might expose the hospital to litigation risk. With often little or no experience of health care at the coalface, they struggle to grasp the speed, daring and courage needed for medical innovation. So they hide behind protocols and policies and mete out punitive consequences for any clinician who deviates from them. Protocols have solidified into monolithic rules – not to help patients but so they could be waved across a courtroom to defend the hospital against complaints.

The current climate has resulted in a loss of professional autonomy and transmogrified doctors into tick-box automatons, no longer guided by guidelines but strangled and suffocated by them. Mavericks used to flourish in medicine, but they have now been stamped out – branded unacceptable variables of unpredictable risk.

All of this has coalesced to mean that the fear of being sued has ruined modern medicine. It’s not good for the doctors, who are constantly questioning what they do and don’t do – not on behalf of the patient, but because they fear having to justify what they are doing in front of cross-examination. And it’s not good for patients, who are denied the chance of cutting edge, untested and unlicensed treatments when they have little or nothing to lose. Things that might be in the patients’ best interests are not pursued, meaning that nothing moves forward for them, or indeed future generations.

It’s this that the Saatchi Bill is designed to address. Its origins lie in Lord Saatchi’s devastation as he watched his wife, the novelist Josephine Hart, die of ovarian cancer last year. He has managed to turn his grief and sense of loss into something that has the potential to bring untold benefit to future sufferers.

The drafting of the Bill, Lord Saatchi explains, is designed to safely advance the freedom of doctors to innovate and strive for advancement, rather than simply accept the status quo because it means that no one can sue them. This doesn’t mean that doctors will have free rein to experiment on a patient. They are still bound by professional guidance and their duty of care still remains to their patient. But what it does mean is that, in cases where the evidence is shaky or wanting, or is not yet clear, the Bill sets out a code by which doctors can try alternatives. In this way, it actually offers the patient more security than they have at present because it provides, for the first time, a robust legal framework to encourage responsible innovation in diagnosis and treatment.

One in three of us will get cancer. If the survival rates are going to improve, doctors must be free to innovate, and this is what Lord Saatchi’s Bill does. I hope our politicians can see this, too.

→READ in the Telegraph: Dr Max Pemberton writes about why he supports Maurice Saatchi’s Medical Innovation Bill in the Telegraph.

The Telegraph: Lord Woolf, former Lord Chief Justice, outlines from the legal perspective why the Saatchi Bill is necessary

Published in the Telegraph today Lord Woolf, former Master of the Rolls and Lord Chief Justice, writes from the legal perspective why the Saatchi Bill is necessary and why it has his support.

Lord Woolf on the Medical Innovation Bill
Lord Woolf on the Medical Innovation Bill

By Lord Woolf:

Read in the Telegraph

Maurice Saatchi is passionate about the legislation he is promoting to encourage responsible innovation in medical treatment. He has a very personal reason for his campaign. His wife, the novelist Josephine Hart, died of ovarian cancer in 2011 and he believes, in his own words, “that her death was a wasted death, indeed that all 165,000 cancer deaths in this country every year are wasted deaths because science advances not one centimeter as a result of them”. His bill aims to change that situation.

My own reasons for giving my support to his plans – currently the subject of a Department of Health consultation that ends tomorrow – arise from my work as a lawyer. I have not, thankfully, had to face a similar domestic tragedy to his, but what I do know about, from sitting as a judge, are the cases where doctors are sued for negligence because they have innovated in the treatment they offer, rather than following generally-accepted medical standards.

In my experience, professional people are, on the whole, very conservative, and it is cases such as the ones I mention that make doctors frightened to try something different, something not yet fully tested, even when their patients give their consent, and when, as was the case with Josephine Hart and many others, they face certain death if standard procedure is all that is on offer.

Doctors don’t by nature want to step out of line, risk their professional reputation, or being labelled a quack by colleagues. That is, most of the time, a good thing. There should not be a culture in our hospitals of risk-taking with patients’ lives. But what is covered in these plans is a very specific set of exceptional circumstances, where there are potential benefits to allowing doctors to put their heads above the parapet.

It is important to understand here that we are talking about a new law that will make a limited, but significant contribution in a small number of difficult cases. Maurice Saatchi, with the support of Health Secretary, Jeremy Hunt, and of the government, is seeking to introduce legislation that will only apply to: (1) patients who are not responding to conventional treatments; (2) patients who give their consent to such innovation; (3) new treatments that are still at a experimental stage; (4) new treatments that hold out a real prospect of being able to help, both the patient and others in similar circumstances who come after them.

It shouldn’t require too much imagination to envisage those that these proposals might help. If you are a patient suffering with a terrible cancer, where conventional treatment has proved ineffective, your doctor may be aware of something else that could be of benefit, but which has not yet gone through the currently very long process of being fully tried and tested. It can take 15 years and £1 billion to approve just one drug. By the time that has been done, the patient will be dead.

At the moment, the doctor’s hands are tied – by concerns about professional reputation and potential negligence claims. That needs to change.

Crucial to the whole proposal is the principle of true consent. Patients may be in exceptional circumstances, facing death under standard procedures, but that doesn’t mean they are incapable of saying yes or no. Many will, indeed, refuse to be treated as guinea pigs, but some will decide to consent, because they believe it offers them hope of extending their lives, and perhaps saving the lives of others in years to come.

Surely, the patient, as the person most affected, must be allowed the chance to make up their own mind in such circumstances. There must, of course, be safeguards, and to achieve true consent the proposed legislation will require very careful drafting, and close scrutiny by the revising chamber of Parliament, the House of Lords, where I sit alongside a number of very distinguished lawyers and medics. Indeed, it has been the decision of some of those senior medical figures in the Lords to give their support to Maurice Saatchi’s plans that has persuaded me to line up behind him in arguing for this change to the law.

It would be a mistake to think, as some are perhaps tempted to do, that what is being proposed here is part of another current debate – over giving the terminally ill the choice to determine how and when they will die. Maurice Saatchi’s proposal is about is extending and saving life, not cutting it short. That should make it more readily acceptable.

I therefore urge Daily Telegraph readers to make their voices heard in the current consultation round by following the link below.

Lord Woolf was Lord Chief Justice of England and Wales from 2000 to 2005

Read in the Telegraph

 

Google Hangout on Medical Innovation Bill hosted by Dr Ranj

TV Doctor Dr Ranj hosts a debate on the Medical Innovation Bill.

Since the debate the Medical Innovation Bill has been amended and introduced into the House of Lords.

Read the new Medical Innovation Bill.


Watch our latest Google Hangout on the Medical Innovation Bill hosted by TV Doctor Dr Ranj.

Sign the petition for the Medical Innovation Bill: http://chn.ge/1pqY6lS

 

Join our Facebook Chat TONIGHT at 8pm

image

Health Secretary Jeremy Hunt has told patients in England and Wales that he will pass the Medical innovation Bill into law if the public tell him they want it.

Patients, doctors and lawyers have responded in their thousands telling him they want the Bill – and, crucially, why.

Officials at the Department of health tell us that it isn’t enough just to tick the ‘Yes’ box – they want to see reasons too. You have been telling him your stories, through the Change.Org response form which goes straight to the civil servants analysing the responses at the department.

Thank you for this.

Yet, we know that even though people want the Bill, there is a real danger that officials will remain unmoved. Don’t give them the option to ignore you. That’s why we’re holding this Facebook chat – to hear your stories, to inspire each other to respond, to tell civil servants who control the consultation that this is a democracy and that you want the Bill.

Join our Facebook Chat April 15th 8pm on our Facebook page: http://on.fb.me/1fOcOUG

But the Bill isn’t the only game in town – it is part of a bigger movement for medical innovation and the search or new treatments for so-far incurable diseases, like Duchene’s Muscular Dystrophy, for example. The Saatchi Bill Team has been working with Empower Access To Medicine, Harrison’s Fund, cancer charities, patient groups and many others to support each other as a community of patients and carers who want to see lives saved and changed for the better.

Empower Access to Medicine  wants to speed up access to new drugs therapies. At the moment drug trials and development take years. But patients who are dying don’t have time to spare. So Empower has persuaded the Department of Health to allow patients and doctors to use promising drug therapies before they have finished the full trials process.

It’s a great achievement.

James Hargrave, Empower says: “Both Empower: Access to Medicine and Lord Saatchi’s Medical Innovation Bill are working to put patients at the heart of medicine. Doctors must be allowed the space to innovate responsibly without fear or favour – but to be able to do this the drug development process needs to be fit for purpose so that there are innovative treatments for them to use.

“The time has come for medical regulation to match modern medicine.”

The Saatchi Bill will, if passed, support doctors who want to use such medicines early – by giving them confidence to prescribe them without the risk of being sued – as long as they get the consent of other senior doctors and the patient.

So, the Saatchi Bill is vital part of a bigger picture. The Bill alone will make a big difference. But in alliance with all the work and big campaigns by Empower and others, we will be unstoppable.

The consultation ends on 25 April. Don’t let officials say that you didn’t want the Bill. Please respond. 

Sign the petition: http://chn.ge/1pqY6lS

Join our Facebook chat tonight, April 15th, at 8pm on the Saatchi Bill Facebook page: www.facebook.com/SaatchiBill

 Sign the petition for the Medical Innovation Bill: http://chn.ge/1pqY6lS