A selection of quotes from those who support the Medical Innovation Bill across the medical, research & legal fields and patient groups and their families.
“It is a tragic indictment of modern medicine that innovation is too often jettisoned in favour of the status quo for fear of legal action. Defensive medicine is at the heart of so much clinical practice today, but the Bill – if accepted into law – would deftly excise this, leading the way for doctors to feel free to strive for medical advancement.
Dr Max Pemberton writing in the Daily Telegraph.
“The Bill seeks to support doctors who endeavour to act in the best interest of their patients without the fear from litigation. It deters from irresponsible experimentation but encourages a much needed attitude change of innovation in the provision of care to cancer patients.”
Professor Ahmed Ashour Ahmed,
Professor of Gynaecological Oncology, Consultant Gynaecological Oncology Surgeon and Scientist,University of Oxford
“At the moment, the doctor’s hands are tied – by concerns about professional reputation and potential negligence claims. That needs to change.” “It is nonsense to suggest that the culture of litigation that now exists does not have a dampening effect on doctors. It is something that hangs over them”
The Former Lord Chief Justice, former Master of the Rolls, Lord Woolf
He was the first Lord Chief Justice to be President of the Courts of England and Wales.
“We all believe in evidence-based medicine. But in cancer there either is no evidence, or if there is, it is not clear what it means”
Professor Stephen Kennedy, Nuffield Department of Obstetrics & Gynaecology, University of Oxford
“..As yet there is no formally established quality assurance framework for proactive evaluation of innovative therapy in respect of its applicability, or suitability, prior to delivery. The existing pathways tend to be post hoc review through litigation, regulatory or disciplinary processes, or local procedures such as root cause analysis, serious incident review, or clinical audit. These ‘after the event’ mechanisms are unsatisfactory, since they are usually predicated on some form of adverse outcome. “
Jo Samanta, Principal Lecturer at Leicester De Montfort Law School, specializing in medical ethics.
“I am confident that, with the amendments made in Committee stage, the Bill is safe for patients and has the potential to encourage responsible innovation.”
Dame Sally Davies, NHS England chief medical officer
“Encouraging innovation in medicine and protecting patients are both of vital importance. That is why I am pleased that amendments have been devised to address concerns about patient safety.”
Sir Bruce Keogh, Medical Director of the NHS
“The Saatchi Bill will allow responsible innovation.” says Sir Michael Rawlins.
“From trying out things in individual patients, that can lead onto research and benefit thousands of other patients.”
Sir Michael Rawlins is Chair of Medicines and Healthcare Products Regulatory Agency, former chairman for National Institute for Health and Clinical Excellence (NICE) and President of the Royal Society of Medicine
→LISTEN: Sir Michael Rawlins – BBC Radio 4 Today programme, June 2nd 2014.
“Nothing in healthcare is without controversy. But with innovative medicines, as with the recent controversy over patient data, the arguments on both sides boil down to one single point: who wants to be better for longer?
“One thing’s for sure – I do. I think you do too. If any of us got that diagnosis, we’d want to know we had access to the latest drugs. Last week’s announcement – and the pioneering campaign of the Saatchi Bill – helps make sure we do.”
George Freeman MP, Minister for Life Sciences
“In our case the risk of doing nothing is not nothing, the risk of doing nothing is fatal. Fatal every single time. You never survive this. What we are not willing to do is assume the risk of doing nothing”
Alex Smith runs Harrisons Fund, a charity that funds research into Duchenne Muscular Dystrophy – a 100% fatal condition with no cure.
“There will never be enough trials for the less common diseases. So when patients are in a situation with “nowhere else to go, they need to be able to try treatments that might work, based upon the best judgment of their medical advisors.
We need to allow them to try such new drugs that may be applicable and collect that experience to inform the next generation of trials. The Saatchi Bill would do this, by protecting individual doctors who try new, licensed but untrialled treatments, on patients who have consented to such treatment outside of a formal trial.”
Professor David Walker – Professor of Paediatric, Oncology Faculty of Medicine Health Sciences, University of Nottingham.
“There have been major advances in some areas, but in others it has been agonisingly slow, and we are still left with treatments that are extremely blunt instruments. Take, for example, bone cancer. Treatment frequently involves amputation and extremely toxic chemotherapy. Lord Saatchi’s Bill draws attention to the need to innovate when the prognosis of an individual patient is poor.”
Professor Andy Hall, Associate Dean of Translational Research at Newcastle University
“Once Chloe only had six months left to live, how could any radical potential new treatment have been defined as too risky or too dangerous. These words risky, dangerous, are utterly meaningless in this context. What if doctors tried something different, something new, something promising? Chloe might well have died anyway, and I accept that, but surely what she would have left behind would have been more clinically valuable for other children, for other teenagers.”
Debbie Binner, mother and campaigner who lost her 18-year-old daughter to Ewings Sarcoma.
“Much of this problem has been driven by ‘no win, no fee’ lawyers. They have been increasing fees to cover those cases they lose as well as adding on extra costs, known as ‘success fees’ when they win.
In many cases these far outweigh any settlement paid to the claimant. For example, in one of the worst cases costs spiralled to almost £93,000 whilst the claimant only got £2,000.”
Steve Barclay MP, as member of the Public Accounts Committee
“Protect the patient. Nurture the innovator.”
Professor Norman Williams, President of the Royal College of Surgeons
“…this is a vitally important Bill to drive forward the practicalities of innovation in clinical practice. I hope that it will also drive forward a positive culture of putting innovation at the heart of all clinical thinking.”
Lord Kakkar, Professor of Surgery at University College in London and a member of the General Medical Council said at the House of Lords Committee stage 24th October 2014
“Departing from what is regarded as established practice or the standard of care leaves a doctor open to an action for negligence” “The Saatchi Bill will allow responsible innovation.”
Sir Michael Rawlins, Chair of Medicines and Healthcare Products Regulatory Agency; Former Chairman of the National Institute for Health and Clinical Excellence (NICE) and President of the Royal Society of Medicine.
Professor Dean Fennell, Chair of Thoracic Medical Oncology, University of Leicester speaks at the House of Lords about why he feels the Medical Innovation Bill could help advance treatments.
Professor Fennell specialises in mesothelioma, a rare cancer most commonly caused by exposure to asbestos.
“This doesn’t mean that doctors would have free rein to experiment on a patient – they would still be bound by professional guidance and their duty of care would remain to their patient. Nor would it mean that the Bill would become a substitute for proper clinical trials.
“But what it does mean is that, in cases where the evidence is shaky, wanting or not yet clear, the Bill would set out a code by which doctors could try alternatives. It would provide a legal framework by which doctors, in discussion with their patients, could try off-label drugs or a device, treatment or intervention that might have some clinical data supporting it, but has yet to be fully proven.”
Dr Max Pemberton, The Daily Telegraph
“Doctors are afraid of being struck off for not following standard practice and they are afraid of how innovation is seen by the general public,
“The problem is particularly acute for rare cancers. What do you do when confronted with a patient with a rare cancer where the evidence base is not strong or when there is no evidence?”
Professor Stephen Kennedy, clinical director of women’s services at Oxford University NHS Trust, speaking to the Independent on 13th October 2013.
“I am not a medic. I rise to speak because I think that this issue creates all sorts of problems and challenges in which my experience in public policy and economics can help…I think that this is an issue about evidence-based policy.
“We know that markets will not solve the issues that the noble Lord, Lord Saatchi, raises in the Bill.
“The incentive structures are such that the pharma companies will go for those areas where they can sell large amounts of drugs. Rare cases will be problems.
“One issue I have as someone who cares enormously about evidence-based policy—I gave a lecture at the Royal Statistical Society earlier this week on this, when I went on at length, which I will not repeat—is how you generate the right amount of data to handle this problem.
“I received a briefing from the BMA which said that there was no evidence to support such things. Of course there was no evidence; that is the whole point. We have to find ways to generate evidence.
“I strongly support the Bill. In that, I am with Sir Michael Rawlins, president of the Royal Society of Medicine and former head of NICE, who knows about the analysis, so I take the medic side as given.”
Lord Gus O’Donnell on evidence based medicine speaking at the House of Lords committee stage 24th October 2014 .
“…the word ‘innovation’ is a straightforward word in the English language. … if we want simplicity, we should go for perfectly clear English words. “Innovation” is one of them.
“To define it other than that which is not the standard procedure, is to risk limiting it and it is for doctors to decide what is innovation and whether to apply the bill to their proposed procedure.”
Former Lord Chancellor Lord MacKay has said of those calling for a definition of innovation within the Bill.
“I was initially anxious about the fact that there were insufficient safeguards. The approach that I wished to adopt was one that I know has been considered but has been also dismissed.
‘I have, however, become reassured by the process under the supervision of the Medical Director of the NHS, Sir Bruce Keogh.
“He has consulted widely among the profession and I believe that the amendments in the name of the noble Lord, Lord Saatchi, particularly Amendments 12 and 16, bring us to a place where appropriate safeguards have now been introduced.
“I hope that they will be judged sufficient to provide the protection that all responsible and reasonable clinical practitioners would want in a Bill of this nature.”
Lord Kakkar – House of Lords committee 24th October 2014 Professor of Surgery at University College London and member of the General Medical Council, speaking at the House of Lords committee on 24th October 2014.
“…We have silos of innovation and forward-thinking practice throughout the health service. The challenge has been to spread that innovative behaviour more widely and for the diffusion of innovative treatments to become second nature to the health service. It is a cultural issue.”
Lord Earl Howe, Parliamentary Under Secretary of State for Quality said at the House of Lords Committee stage 24th October 2014
Letter to the Telegraph – 2nd October 2014
SIR – The Medical Innovation Bill reaches a crucial committee stage in the House of Lords today. Spearheaded by Lord Saatchi, whose wife died of ovarian cancer – a disease he quite rightly describes as “relentless, remorseless, merciless” – the Bill will make it easier for dying patients to access untested drugs and treatments.
The statistics for ovarian cancer are woeful: the number of deaths has barely changed in 30 years. So, unquestionably, something needs to change dramatically.
Innovation in treatment is important, but with gynaecological cancers it is innovative research into risk prediction, prevention and earlier detection that is going to make the most difference and save more women’s lives.
The statistics for cervical cancer are astounding by comparison: there has been a 70 per cent decrease in deaths over the same 30-year period thanks to advances in screening.
Investing in finding a cure for cancer is important, but we shouldn’t ignore investing in earlier detection.
Athena Lamnisos
CEO, The Eve Appeal
London W14
“My support for the Medical Innovation Bill began at its inception when I was CEO of Teenage Cancer Trust and Chairman of Cancer 52 in the UK in 2013.
“Now I am Executive Director of Teen Cancer America and still support it because it has the potential for global impact that will benefit patients here in America and around the world. There is no doubt in my mind that it’s ripple (or wave) effect will be of transatlantic proportions.”
Simon Davies, former CEO Teenage Cancer Trust – current Executive Director Teen Cancer America
→READ: Teen Cancer America support Medical Innovation Bill
“Rather than inhibiting the development of clinical trials, this data repository can then provide a valuable resource for generating novel hypotheses for new studies. These clinical trials can then underpin any promising benefits shown by patients having innovative treatments.
“Thus, the current status quo of clinical practice, based predominately on the randomised clinical trial might even be improved, and a sensible balance struck between evidence-based medicine and responsible innovation.”
Charlie Chan – consultant general surgeon
“At present there is a great reluctance to deviate from the accepted best clinical practice. Had we been able to obtain the particular drug formulation in the UK, it would have been far easier to convince a clinician to try the treatment – if the fear of litigation was reduced.”
Professor Ian Hampson, Reader in Viral Oncology, University of Manchester
Letter to the Telegraph on Medical Innovation Bill from leading senior oncologists, researchers and patient groups
2nd Feb 2015
SIR – We note the successful third reading of the proposed Medical Innovation Bill (the Saatchi Bill).
While there have been significant advances in cancer treatments in recent decades, there remain areas where there has been no meaningful advance. Diseases such as glioblastoma, sarcoma or pancreatic cancer have seen no clinically relevant improvements over those decades.
While clinicians have leeway to prescribe drugs “off-label”, we know from our direct experience with patients that viable clinical options are not being used in the vast majority of “terminal” cases. When all standard therapies have failed, and there are no clinical trials available, the response is almost uniformly to move that patient into palliative care.
We do not dispute that the clinical trial is necessary in order to identify those advances that work and those that do not. However, the evidence base for medicine can come from many different sources. Data collection is a necessary corollary of increased off-label usage and the new registry included in the Bill will record information (including side-effects and outcome data) in every instance of an innovative treatment. This ground-breaking registry will enable us to analyse real-world data, thereby providing greater patient protection than exists at present.
Ultimately the question that must be addressed is: what can we responsibly offer to those patients for whom there are no suitable clinical trials?
Pan Pantziarka
The George Pantziarka TP53 Trust
Dominic Hill
Film maker & patient advocate
Professor Marc-Eric Halatsch
Professor of Neurosurgery, University of Ulm
Lydie Meheus
Managing Director, Anticancer Fund, Brussels
Dr Gauthier Bouche
Medical Director, Anticancer Fund, Brussels
Richard Gerber
Glioblastoma survivor and patient advocate
Professor Angus Dalgleish
St George’s Hospital, University of London
Professor Ahmed Ashour Ahmed
Professor of Gynaecological Oncology, University of Oxford
James Hargrave
Empower Access to Medicine
Dr John Symons
Director, Cancer of Unknown Primary Foundation
Flóra Raffai
Findacure
Professor Stephen Kennedy
Professor of Reproductive Medicine, University of Oxford
Dr Ian N Hampson
Reader in Viral Oncology, University of Manchester
Professor Andy Hall
Associate Dean of Translational Research, Newcastle University
Professor Emeritus Ben A Williams
Psychology, long-term glioblastoma survivor, patient advocate, Moore’s Cancer Center, University of California, San Diego
Dr Al Musella
President, Musella Foundation, founder The Grey Ribbon crusade: umbrella organisation for over 100 brain cancer charities
Professor John Boockvar
Director, Brain Tumor Center Lenox Hill Hospital NYC
Professor Emil J Freireich
Ruth Harriet Ainsworth Chair, Developmental Therapeutics, The University of Texas, MD Anderson Cancer Center, Houston, Texas
Brett Shockley
Patient advocate
Professor David Walker
Professor Pediatric Oncology, University of Nottingham
Laura Mancini
Clinical Scientist, National Hospital for Neurology and Neurosurgery, UCLH NHS Foundation Trust, London
John Morrissey
Adviser to the Children’s Cancer Research Fund
Stephen Western
Patient advocate, Astrocytomaoptions.com
Richard E Kast
MD, IIAIGC Study Center
Charlie Chan FRCS
Consultant Breast Surgeon
Professor Chas Bountra
Professor of Translational Medicine, University of Oxford
Dr Henrietta Morton-King
North Cumbria University Hospitals Trust
Dr Andrew Brunskill
Clinical Assistant Professor of Epidemiology and Health Services, University of Washington Seattle)
Vincent Galbiati
President & CEO of Tomorrow’s Cures Today, Washington DC
Neil Hutchison
Founder, Magic Water Pediatric Cancer Foundation, San Diego
Fiona Court
Consultant Oncoplastic Breast Surgeon, Cheltenham
Professor Alastair Buchan
Head of the Medical Science Division and the Dean of the Medical School at the University of Oxford
Dr Georgios Evangelopoulos
Patient advocate, lawyer & political scientist
Professor John Yarnold
Professor of Clinical Oncology at The Royal Marsden and Institute of Cancer Research
Professor Jerome H Pereira
Consultant General & Oncoplastic Breast Surgeon, Norwich Medical School University of East Anglia
Dr Lynne Hampson
Non Clinical Lecturer in Oncology, Institute of Cancer Sciences, Manchester
Dr Robert Kirby
Senior Lecturer, Hospital Dean, University Hospitals of North Midlands
Professor Gareth Evans
Professor of Medical Genetics and Cancer Epidemiology, University of Manchester
Dr Rupert McShane
Coordinating Editor Cochrane Dementia and Cognitive Improvement Group, Oxford University
Michael Shackcloth
Consultant Thoracic Surgeon, Liverpool Heart and Chest Hospital
Professor Vikas P Sukhatme
Professor of Medicine, Harvard Medical School, Co-founder Global Cures
Vidula Sukhatme
Co-founder Global Cures
Sarah Lindsell
CEO, The Brain Tumour Charity
Neil Dickson
Chairman, The Brain Tumour Charity
Alex Smith
Founder, Harrison’s Fund
Giles Cunnick
Consultant General & Breast Surgeon, Bucks Healthcare NHS Trust
Dr Piers Mahon
Biotech Consultant
Paul Fitzpatrick
Chairman, Duchenne Now
Dr David Faurrugia
Consultant Oncologist, Cheltenham General Hospital
Dr Chris Govender
Medical Officer in Addictions
Sue Farrington Smith
Chief Executive, Brain Tumour Research
Professor Steven Gill
Professor in Neurosurgery, University of Bristol
Letter to the Sunday Times – a powerful plea from patients
8th February 2015
We are a group united by grief.
We are the bereaved – widows, widowers, brothers, sisters and parents who have lost loved ones to incurable diseases.
We are the parents fighting for the lives of our children who have cancers and degenerative diseases.
We are the patients dying for an answer to our own illnesses.
We have never met each other. But we share a bond of pain and fear.
And we are united in our support for The Medical Innovation Bill.
Not because we believe that it is the silver bullet.
Not because we think if it is passed that tomorrow there will suddenly be new cures for cancers, for Duchenne Muscular Dystrophy and other killer diseases.
We support the Medical Innovation Bill because it gives us hope – hope that doctors will feel more confident to try novel approaches to killer diseases for which current treatments are known not to work.
We support the Medical Innovation Bill because it offers hope to people yet to face what we have faced.
We support the Medical Innovation Bill because it will inspire doctors to innovate and to collect and share the results of their innovations so that medical science is advanced.
We know it will give doctors confidence and legal clarity to try more and to do more.
The patient’s voice has been drowned out. We have been patronised and told we must leave it to the experts.
But we have watched – and are watching – our families die. Some of us are watching our own bodies die.
Doctors have the medical experience. But we have the human experience. Nobody knows more about these fatal diseases than we do.
As the Bill proceeds to The Commons, our voice will be heard.
Gail Rebuck
Sir Michael and Lady Pakenham
Lord and Lady Lloyd-Webber
Victoria Gray
Antonia Wellington
Lord Bragg
Sir Christopher Bland
Frieda Hughes
Vita Paladino
Lord Foster
Debbie Binner
Tom Parker-Bowles
Sara Parker Bowles
Richard Kitley
Mavis Nye
Ray Nye
Omaira Gill
Alex Smith
Rose Fletcher
Claire Cowley
Paul Cowley
Annette Gration
Philip Gration
Pat Hay
Julia Samuel
Sir Henry Keswick
Vivian Duffield
Neil Hay
Mary Toms
Nathan Toms
Barbara Whitehead
Julie Cooper
Christine Winters
Esther Driscol
James Driscol
Maurice Chambers
Beverley Chambers
Gemma Chambers
Clare Smith Daughter
Stauroulla Parker
Michele Parker
Dorothy Vaux
Diane Salisbury
Betty Salisbury
Pauline Debra
Debra Stuart
Stuart Faulser
Jan Weston
Cathy Dear
Elaine Bounds
Karyanne Todd
Amanda Reynolds
Steve Wride
Linda Wride
Richard Elson
Jackie Elson
Dr Irene Kappes
David Wilshire
Faye Wiltshire
Patricia Wiltshire
Dawn Fiddler
Barbara Scott
Robert Scott
Barbara Hampel
Billy Jenkins
Hannah Richards
Angela Davies
Michael Lasseter
Pan Pantziarka
Gail Mathe
Elaine Mitchell
Louis Brooks
Julia Travers-Wakeford
Lawrence Tansley
Sue North
William Pope
Diana Boyle
Robert Johnson
Karen Waldron
Ian White
Gayle McElhinney
Patricia Stubbs
David Williams
Jonathan Stubbs,
Julie Williams
Jane Weitzmann
Jen Selig
Sally Greene
Emily Crossley
Nick Crossley
Tony Levene
Paul Fitzpatrick
Lord Smith of Clifton
Alex Johnson
Andy Johnson
Lara Veitch
Natasha Bramble
Kerry Rosenfield
Doron Rosenfield
Emma Hallam
Andy Hallam
Steven Ho
Letter to Telegraph from medics and patients.
Saatchi’s Bill would benefit both patients and doctors
The proposed Medical Innovation Bill encourages research while deterring mavericks.
SIR – We are patients, advocates and doctors. We have one thing in common: we all support the Medical Innovation Bill currently having a second reading in the House of Lords, which will legally protect doctors who try out innovative new techniques or drugs on patients when all else has failed.
This Bill will protect the patient and nurture the innovator. It will encourage safe medical advancement, while at the same time deterring the maverick, thereby recalibrating the culture of defensive medicine.
Finally, it will work with evidence-based medicine and provide new data that will inspire and support new research.
We urge the Lords to pass this Bill.
Prof Alastair Buchan
Dean of Medicine, University of Oxford
Michael Ellis MP (Con)
Prof Michael Rawlins
President, Royal Society of Medicine
Prof Ahmed Ashour Ahmed
Professor of Gynaecological Oncology, University of Oxford.
Prof Stephen Kennedy
Professor of Reproductive Medicine, University of Oxford
Dr Henrietta Morton-King
Cumberland Infirmary
Prof Andy Hall
Associate Dean of Translational Research, Newcastle University
Dr Rupert McShane
Prof Mohammed Keshtgar
Professor of Cancer Surgery, Royal Free London Foundation Trust
Prof John Yarnold
Professor of Clinical Oncology, The Royal Marsden
Prof David Walker
Professor of Paediatric Oncology, Nottingham University
Prof Riccardo A Audisio
President, Association for Cancer Surgery
Mr Charlie Chan
Consultant General Surgeon
Alex Smith
Founder, Harrison’s Fund
Dr John Symons
Director, Cancer of Unknown Primary Foundation
Prof Dean Fennell
Chair of Thoracic Medical Oncology, Leicester University
Eve Pollard
Vice Chair, Wellbeing of Women
James Hargrave
Empower Access to Medicine
Dr Robert LeFever
Ian MacWatt
Honorary Secretary, Caring Cancer Trust
Prof Ian Hampson
Reader in Viral Oncology, University of Manchester
Charley Kitley
Cancer patient
Mavis Nye
Cancer patient
Ismena Clout
Cancer patient
Simon Davies
Chief executive, Teen Cancer America and former chief executive, Teenage Cancer Trust UK
Dr Wen Hwa Lee
Strategic Alliances Manager, Structural Genomics Consortium, University of Oxford
Leena Chagla
Lead Clinician, Breast services, Burney Breast Unit
Tony Levene, Vici Richardson, Paul Fitzpatrick
Trustees, Duchenne Now
Dawn Piechoczek
Cancer patient
Dr David Blacklidge
Dr Elizabeth Perdeaux
The Myrovlytis Trust
Dr Lynne Hampson
Lecturer in Oncology, Manchester University
Prof Christopher W Pitt
UCL
Dawn Fidler
Chief executive, The Joshua Wilson Brain Tumour Charity
Linda Wride
Patient
Steve Grew
Patient
Sharon Kember Brazier
Patient
Claire Cowley
Patient
Kamran Pirani
Baker & McKenzie LLP
Dr Colin Newman
Sally Becker
Patient
Flóra Raffai
Manager, Findacure.org.uk
Clara Mackay
Interim chair, Cancer52
Emma Hallam
Director, Alex’s Wish Charity
Alexander Masters
Author and rare cancer research advocate
Allyson Kaye
Chair, Ovarian Cancer Action