NHS: Cancer Treatments
(6 years, 10 months ago)
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Baroness Jowell
To ask Her Majesty’s Government what action they are taking to evaluate innovative cancer treatments and make them available through the National Health Service, and to raise life expectancy for cancer patients.
Baroness Jowell (Lab)
I begin by extending my deepest gratitude to everybody who is giving their time to attend the debate this afternoon, and to contribute to something that will begin to reshape the way we think about the treatment of cancer for people all over the world. In doing so, I thank the noble Lords, friends and colleagues who have shown me such support since I learned that I had a brain tumour. Today, though, is not about politics but about patients and the community of carers who love and support them. It is of course about the NHS but it is not just about money. It is about the power of kindness, support for carers, better-informed judgments by patients and doctors, and sharing access across more and better data to develop better treatments.
I shall briefly tell your Lordships what happened to me. On 24 May last year I was on my way to east London to talk, not for the first time, about new Sure Start projects. I got into a taxi but I could not speak. I had two powerful seizures. I was taken to hospital. Two days later I was told that I had a brain tumour—a glioblastoma multiforme, or GBM. A week later the tumour was removed by an outstanding surgeon at the National Hospital in Queen Square. I then had the standard treatment of radiotherapy and chemotherapy. To put it in context, across the country GBM strikes fewer than 3,000 people every year. It generally has a very poor prognosis.
Less than 2% of cancer research funding is spent on brain tumours, and no new vital drugs have been developed in the last 50 years. A major factor in survival is successful surgery. The gold standard is to use a dye to enable the surgeon to identify the tumour precisely, but it is available in only about half the brain surgery centres in the UK, and it must of course be extended to all of them.
Cancer is a tough challenge to all health systems, particularly to our cherished health service. We have the worst survival rate in western Europe, partly because diagnosis in cancer is too slow. Brain tumours, in particular, grow very quickly, and they are very hard to spot.
However, there is a good reason for hope. It is called the Eliminate Cancer Initiative. Its director, along with his great colleague who is travelling with him, is here with us today, one of the greatest men in the cancer field: Professor Ronald DePinho from the MD Centre in Houston. ECI is a global mix of programme and campaign, already under way in Australia. It is designed to be rolled out next in the UK, the USA and China. It recognises that no one nation can solve the problem of GBM on its own. It is an opportunity that belongs to the world.
ECI aims to do three main things: first, link patients and doctors across the world through a clinical trial network; secondly, speed up the use of adaptive trials; and thirdly, build a global database to improve research and patient care. Usually, drug trials test only one drug at a time. They take years and cost a fortune to deliver. New adaptive trials test many treatments at the same time. They speed up the process and save a lot of money. We can see approaches to the delivery of cancer treatment transformed.
ECI also has a secure cloud platform—it sounds rather technical, but you will very soon understand its importance—where doctors can share insight and data. Too much data is held in silos with highly limited access. That reduces its value. This is quite a new approach. Already, collaborative discussions are under way in England. ECI will focus on GBM because it is so tough to beat. It is all about sharing knowledge at every level between everyone involved. If we achieve this, we will go a long way to crack GBM and other cancers.
For what would every cancer patient want? First, to know that the best, the latest science was being used and available for them, wherever in the world it was developed, whoever began it. What else would they want? They need to know that they have a community around them, supporting and caring, being practical and kind. While doctors look at the big picture, we can all be a part of the human-sized picture.
Seamus Heaney’s last words were, “noli timere”—do not be afraid. I am not afraid. I am fearful that this new and important approach may be put into the “too difficult” box, but I also have such great hope. So many cancer patients collaborate and support each other every day. They create that community of love and determination wherever they find each other, every day. All we now ask is that doctors and health systems learn to do the same, and for us to work together, to learn from each other.
In the end, what gives a life meaning is not only how it is lived, but how it draws to a close. I hope that this debate will give hope to other cancer patients like me, so that we can live well together with cancer—not just dying of it—all of us, for longer. Thank you.
Lord Blunkett (Lab)
My Lords, this is the greatest privilege, and one of the most daunting moments of my life—to follow my noble friend, with the eloquence, the care, the compassion and the courage she has shown. She is my noble friend—not by affiliation or values, although we share them—but through a lifelong friendship that has lasted for well over 40 years.
If the House will forgive me, I want to say a word about Tessa—the noble Baroness, Lady Jowell—as a person. We got to know each other when we both chaired our respective social services committee. That is when I saw to begin with her care and compassion, described so well this afternoon. It is a compassion that has overcome the challenges that she faces and those of her family. Yesterday on the “Today” programme, and she said it this afternoon about the community of care, it was not just her own courage that shone through; it was the deep love and affection of her family—David, Jess and Matthew, and her extended family. The care she displayed this afternoon reached out, because it is the caring family and the community around those with cancer who travel on the journey as well. It is the love and hope that they give that reaches out.
Sally, the young mother on the “Today” programme yesterday, as with the experience of the noble Baroness, Lady Rebuck, whose husband Philip I knew well and saw just three days before he died, displayed the search for excellence, for innovation and, above all, for action, that my noble friend has called for this afternoon.
I know absolutely nothing about the ECI—but I will. There is a need to set aside bureaucracy in terms of the experimentation that patients who are on this journey wish to try, to set aside the usual processes and to share the best practice from wherever it comes. Part of the role of family is to enable people to be able to sustain themselves while they seek access to that innovation and that improvement, and to know about where excellence exists here and across the world. Who you know is so often—too often—the telling point when you are seeking the best that exists in scientific development. What my noble friend Lady Jowell, my friend Tessa, has said this afternoon is that this should be available whoever you know, wherever you are and whatever access you have had to other people’s knowledge. The breakthroughs across the world need to be made available as quickly and with as little bureaucracy in our health service as possible.
My noble friend mentioned 24 May last year, when she was on the way to a Sure Start programme. She and I—when she was the first designated Public Health Minister and I had education and employment—started the Sure Start programme. We both went on a journey through to Cabinet—she exemplified her own wonderful networking skills in helping us to win the Olympics for London and their implementation, which shone across the world, and I had all sorts of different guises, good and bad. That journey has, for Tessa, my noble friend, always been about support, care and reaching out to others. When terrible terrorist attacks have taken place, not just here but across the world, she has cared about those families, just as her family now care about her. We are, all of us, privileged to be here this afternoon and to have heard her speak. She has given us a clarion call to pick up that cudgel and work tirelessly to ensure that what she seeks is carried forward for others in the future, and that our NHS, our scientists, our innovators and our consultants can draw down on the experience from across the world and can remember Tessa Jowell as we all will, and who we are privileged to have heard this afternoon.
Lord Falconer of Thoroton (Lab)
My Lords, there is a lot of skulduggery in politics. Tessa said that this was not about party politics. It is not about party politics, but it is so much about politics. Looking to my left and to my right, I see every Labour Peer I have ever met—and a large number I have never met. Looking further to my left, I see innumerable Members of Parliament and, looking to the Public Gallery, I have never seen it as full as it is today. Every one of them is a friend or a member of the family of Tessa Jowell. In the decades that I have known her, she has done what everybody in the country wants their politicians to do—to earnestly follow noble causes and to try to make life better for other people. Tessa has been doing that in every way on every day for years and years.
These last months, for Tessa, have not been easy, but three things shine out. First is the extent to which she has touched other people’s lives. She has had masses and masses of correspondence from people she has helped. Just one sticks in my mind. It concerns a journalist she had met when she was Secretary of State for something. The journalist was having trouble, having just had a baby. Tessa went to a far part of south London—I apologise to the people of south London—just to see the journalist and offer her assistance in relation to bringing up her new baby. That was absolutely typical of Tessa.
Tessa said that we should try to bring some kindness into politics. That is what she has done all along. There is so much to go with Tessa. She is going to make such a difference in what happens in the world. When the test of character came for Tessa on 24 May 2017—and, my goodness, it came—my goodness me, she passed it.
Baroness Neville-Rolfe (Con)
My Lords, I would like to congratulate the noble Baroness, Lady Jowell, on arranging this debate, and express my extreme admiration for her brave and moving speech. It is an honour to be able to add praise for all she has done and for the battle that she and her family have fought. As a result of her efforts, I believe that she will help many in the future who are less fortunate than her.
My younger sister died of cancer last year. She was a successful novelist with a great capacity to make friends and an extraordinary knowledge of culture and languages. But she had a pain and she did what so many women do, which was to struggle on and delay seeking medical help, with fatal consequences. In spite of the brilliance of the doctors in Dartmouth, New Hampshire, she died within two years of her first pain. So I am speaking today not only to commend the noble Baroness, Lady Jowell, but to encourage everyone to seek medical advice in such circumstances, and to endorse the Government’s scheme for referring possible cancer cases to hospital within two weeks.
Since I have a business background, I want to make two other points. The first is to commend the pharmaceutical sector for its many breakthroughs. Of course university research and development is critical, and we have an extraordinary share of Nobel Prizes in this country, but we also have great firms: AstraZeneca, GSK and smaller innovative sisters which apply capital and data, do trials and create a business model that can help millions of patients and shareholders—for example, our pension funds. These businesses have a real role in the task of finding innovative solutions for hard-to-tackle cancers, including brain cancer, which we are discussing today.
The second is to highlight the role of business-focused corporate responsibility. When I was at Tesco, we created a partnership with Cancer Research UK called Race for Life. Every year we organised 200 or 300 races in parks across Britain, with a lead event in Battersea Park. I ran it 11 years on the trot. They were amazing experiences, with women young and old, from our checkout to David Cameron’s office. There was always a splendid turnout of MPs and leaders like Helen Alexander, who sadly died of cancer herself last year. And there was always a bevy of Baronesses to add a touch of class and shed a few pounds, and some of you are here today. That was fun, but the important thing is that we raised a vast amount of money for Cancer Research UK—over £400 million in that period—and we increased the salience of cancer research through our TV ads and promotions. And on the back of every runner was scribbled a message about a friend with cancer, or a friend who had died of cancer—a very emotional experience. In that era cancer recovery rates accelerated. We were in the right place at the right time. I wish the noble Baroness’s campaign similar success.
Baroness Rebuck (Lab)
My Lords, I, too, thank my noble and utterly inspirational friend Lady Jowell. Very few people can take a personal challenge and transform it for the universal good with such courage, insight and compassion. She is a beacon of light and purpose to us all, and I thank her from the bottom of my heart.
My remarks are based on personal experience, as my late husband, Philip, Lord Gould of Brookwood—a great friend and a tremendous admirer of my noble friend Lady Jowell—died of oesophageal cancer in 2011. A routine test in 2008 showed an advanced adenocarcinoma and a 30% chance of survival. Chemotherapy had limited effect, and influenced by advisers—we have heard about that—and fortunate enough to have the means, my husband chose to go to New York for his life-saving operation. That was a mistake, and 18 months later the tumour returned in exactly the same place. Only then did we discover the oesophageal centre at the Royal Victoria Infirmary in Newcastle, and Professor Griffin, who undertook a very unusual second operation which extended Philip’s life by a year. But where was the accessible database highlighting this centre of excellence when we needed it most?
There have been precious few innovations in oesophageal cancer since, so we must harness digital development—accumulate and share research studies from our NHS and around the world—as the noble Baroness, Lady Jowell, advocates with the Eliminate Cancer Initiative. In the UK, interestingly, we have a resilient IT platform, Coordinate My Care—CMC—created by NHS clinicians for end-of-life care in London, putting patients’ experiences at the heart of its data collection. Doctors develop a personal healthcare plan, which is shared in real time with health and social care and emergency services. In the last year, five out of 10 seriously ill patients died in hospital in London, but for those on CMC it was less than two out of 10, with the biggest increase in those able to die at home, as they wished. If we genotype every cancer sufferer and do DNA sequencing on their tumours, as our Chief Medical Officer has called for, and if we ask patients to record every side effect on a simple app, by adding this phenotypic data to genotypic data we could—just imagine—have sets of priceless data and improve patient/oncologist consultations by providing a graph of reactions.
Most oncology teams are rightly focused on improving survival. Pain, nausea and bone marrow support are the main traffic lights for routine intervention. But patients with digestive system cancers, including stomach and colon cancers, all suffer other unpleasant side effects which can crush their spirit, leaving them debilitated and home-bound. A pioneering gastroenterologist at the Marsden who specialises in uncovering the cause of these symptoms and curing them was so essential to Philip’s quality of life that I fundraised for a proof of concept trial which over the past two years found that nearly all patients responded positively to one of three inexpensive tests based on simple algorithms delivered by a trained nurse. The result: a better quality of life and better tolerance of treatment. Could this inexpensive intervention be introduced in relevant centres without a randomised trial?
Our marvellous NHS is overwhelmed and struggling to make the paradigm shift to personalised cancer care and take advantage of global research. A universal patient-centric database of genetic information, treatment and symptoms could be a bridge between the tried-and-tested protocols we currently depend on and the personalised medical programmes of the future, ensuring increased innovation and continuous improvement, which my noble friend Lady Jowell has called for. Perhaps Coordinate My Care could become a national programme, providing key data for her urgent vision of international medical co-operation.
Baroness Morgan of Drefelin (CB)
My Lords, I have joined this debate to pay tribute to the noble Baroness, Lady Jowell, for speaking out so bravely and powerfully on behalf of patients to promote faster access to innovative treatments for cancer patients, which is so desperately needed. I start by declaring my interests as the chief executive of the medical research charity Breast Cancer Now and as chair of the National Cancer Research Institute.
We know that research has led to huge improvements in cancer outcomes, particularly in breast cancer, the area I know best. We know too that, sadly, progress has not been uniform, and it has been woefully slow for some cancer types. This needs to change. As we have heard, it is time to do the really difficult stuff. Brain tumour research must be of enormous concern for the whole cancer research community, not least because, in addition to many patients with primary brain tumours, thousands of patients with breast, lung, skin and bowel cancer will develop metastatic brain tumours, reducing their life expectancy to single figures too.
Time is short and speed is of the essence. However, because we want patient safety and fair access for all, the system takes its time to assess the clinical evidence for, and cost effectiveness of, new treatments, then to negotiate deals with drug companies and then to work through the budget impact hurdles that treatments have to overcome. But patients need access to life-saving treatments now, and we are being left behind other similarly wealthy economies. Therefore, the system needs to change.
I believe that adaptive trials offer real flexibility that can benefit both patients and research, but there are challenges involved. This type of trial and other new approaches are becoming more accepted by funders and, crucially, by the regulators, who drive the methodology in these situations. This needs to be further encouraged, and there are other innovative ways of speeding up trials that can help too.
Innovative clinical trials are the key to faster access, but joining up data is vital too. On a very practical level, the NCRI is bringing together multidisciplinary teams of researchers who are expert in clinical trials. They represent a unique resource for UK science. I am delighted that the latest new collaboration is to bring UK researchers in lung, breast and skin cancer together with brain tumour researchers to look at new opportunities. This would be a great chance to take forward the noble Baroness’s ideas.
Finally, innovation does not have to be expensive. For example, you would think that repurpose drugs could get to patients quickly but it is not so easy. I know that the Minister knows all about that and I look forward to hearing from him. Again, I congratulate the noble Baroness on speaking hope for patients.
The Lord Bishop of Carlisle
My Lords, it is a great privilege to speak in this debate. I begin by observing that although, as we have heard, we currently have one of the worst cancer survival rates in Europe, the overall 10-year survival rate for all cancers in the UK has improved from 25% a few decades ago to 50% today. The laudable and ambitious goal of our cancer strategy is to make that 75% within the next decade, thereby not only catching up with but surpassing international, and especially European, averages. Cancer Research UK, among other agencies, is currently researching possible therapeutic interventions, many of them innovative, in a range of more than 200 different types of cancer, and that is something to celebrate. However, I suggest that three vital conditions need to be met if those aspirations are to be achieved.
The first, as others have mentioned, is proper funding for research as well as for the highest-quality treatment available for all cancer patients. This is obviously a major challenge for an NHS which is strapped for cash and for a country which faces so many massive, competing demands for its resources. In the previous debate today, I and others referred to the recent report of the Lords Select Committee on The Long-term Sustainability of the NHS and Adult Social Care. I beg your Lordships’ indulgence to do so again now, as that report, which I hope we will soon be able to debate, directly addresses this issue.
The second condition is prioritising planning, especially of the workforce. Health Education England’s cancer workforce plan talks about training 300 more endoscopists and 200 more radiographers, and about every patient having access to a cancer nurse specialist by 2021. That is most encouraging but it has to be seen in the context of a significant shortage of staff trained to perform tests necessary for diagnosing cancer and alarming forecasts about future vacancies. For instance, 28% of radiographers are due to leave by 2021. The APPG on cancer concludes that NHS England will struggle to achieve the objectives set out in the cancer strategy unless corrective action is taken immediately—and that includes taking the NHS out of party politics in order to encourage long-term plans.
The final condition is putting patient outcomes ahead of process target performance. This is essential for identifying treatments for inclusion within the NHS. It also applies to the release of funding, both for early diagnosis and support for life after treatment. Several cancer care alliances have had their funding delayed because of their lack of progress against the 62-day wait standard, and some genomic diagnostic testing is in danger of being withdrawn even though that may mean that thousands of cancer patients may have to endure what, for them, would be unnecessary and debilitating chemotherapy. Good patient outcomes include not only increased life expectancy through cure or slowing down the disease but the prospect of improved palliative care.
I welcome this short debate on innovative cancer treatments and, like everyone else, I am grateful to the noble and courageous Baroness, Lady Jowell, for securing it. I hope that its outcome will be another step forward for cancer patients everywhere.
Lord Turnberg (Lab)
My Lords, it has been a real privilege to hear the noble Baroness, Lady Jowell, give such a brave and inspiring speech. I do not know how anyone cannot be very touched by her words. I have long admired her and now more than ever see her as an inspiration. The spirit that she demonstrated so clearly is absolutely characteristic of her. If I may be permitted a personal note, I love the hat.
The noble Baroness makes an impassioned case for the availability of new experimental forms of treatment, and who is there to gainsay her? Cancer Research UK says we need much more research to understand the nature of glioblastomas—and of course it is right too—but meanwhile what are patients to do? It is true that doctors are able to prescribe novel treatments for individuals on what is known as the named patient basis, and the Bill of the noble Lord, Lord Saatchi, a couple of years ago encourages that approach. However, the problem is that many such new treatments are specific for very small numbers of cancer patients and the costs are enormous.
That immediately brings us to the question of funding—we cannot get away from that. The late lamented cancer drugs fund was soon overwhelmed by the high costs of new diagnostics and drugs. The remarkable advances in so-called liquid biopsies, in scanning, in proton beams and in specifically tailored molecular therapies and immunotherapy are all extremely costly, and no amount of juggling with flexible pricing mechanisms and outcomes-based pricing will find the money needed. So I ask the Minister whether the Government will take note of the recommendation in the Select Committee’s report on the future sustainability of the NHS for a new method of funding involving a hypothecated tax system based on national insurance payments. I am sorry to be so controversial.
The average age of your Lordships’ House is 69. That means that almost half of us have or will have had one cancer or another. I have had two and I suppose, statistically speaking, that saves one other from having one. That makes cancer take on an intensely personal meaning for all of us and we are fortunate to live at times when so much more can be done for us than ever before. Unfortunately, it all comes at a cost and we could be doing so much better. As we lag behind in so many ways, in some cases we are complicit in failures that should just not happen.
I finish on a point about prevention, where we might be able to save someone. We have an extremely effective way of detecting women who are susceptible to ovarian and breast cancer. Here I express my interest as a recently retired trustee of the charity Ovarian Cancer Action. Testing for the BRCA gene, the gene responsible for passing on susceptibility, is now offered to close relatives of ovarian cancer patients, but a relative who is not quite so close, with a smaller chance—say 5%—of being a carrier, cannot have the test. If you have a one in 20 chance of carrying a gene such as that, would you not go for a test costing just £175? It is a bargain for the NHS. I ask the Minister: will the offer of such a test now be made to all such at-risk relatives?
Finally, the briefing I have had from Cancer Research UK suggests that our ability to conduct vital cancer research will be compromised after we Brexit from the EU if we cannot ensure the future of cross-border clinical trials, as has been spoken of. Will the Government ensure that we will be able to continue to collaborate seamlessly with centres in the rest of Europe after Brexit?
Baroness Finn (Con)
My Lords, I pay tribute to the noble Baroness, Lady Jowell, for calling such an important debate. She shows the dignity and courage in confronting her illness that have characterised her approach throughout her inspiring career in public life. It is typical of her selfless determination that, passion and energy undimmed, she is still fighting to ensure that everyone receives the best care.
Cancer is one of the most feared words in the English language. It represents a terrifying diagnosis. It is the number one cause of untimely deaths in Britain. Cancer has touched all our lives, and we should fully support anyone who wants to try an innovative drug or treatment. When confronted with dreaded words such as “malignant”, “inoperable” and “advanced”, surely any alternative that offers hope is better than none. There is another important reason to allow patients to take the risk of different innovative treatments. Quite simply, there will be no cure for cancer unless patients can receive them.
Many cancer patients talk of the wonderful care they receive from the NHS, but, as others have pointed out, this should not blind us to the fact that, of the top 30 countries that offer universal access to healthcare, the UK is in the bottom third for cancer survival.
Time is necessarily short, so I will make three brief observations. First, we fail to invest sufficiently in the early diagnosis of cancer. If caught early, the chances of cure and survival are dramatically improved. In some states in the USA, there has been a concerted effort to try to catch lung cancer with CT scanning and the pioneering use of keyhole surgery.
Secondly, the Government need to help transform a culture in the NHS that can be resistant to innovation. When a patient is handed a terminal diagnosis and only standard treatments that do not work, the patient dies, and so does any chance of finding a cure. We need to ensure that our remarkable NHS staff are developed and empowered to adopt and interact quickly with the innovations that become available, both in the UK and overseas.
Thirdly, there needs to be a broader argument about the reform and funding of the NHS to put this on a long-term sustainable basis. My honourable and, indeed, very good friend Nicholas Boles, who has been cured of cancer twice, rightly praises the outstanding treatment he received from the NHS. He has proposed that the NHS should be given its own stand-alone funding stream, perhaps through hypothecated national insurance contributions. The debate is certainly urgent and long overdue.
To quote Dylan Thomas, from my native Swansea, most patients when confronted with terminal cancer and the possibility of dying do not want to go gentle into that good night. Like the noble Baroness, they want to focus on staying alive and take the risk of adaptive trials. They should be able to rage against the dying of the light by trying innovative treatments to keep their hope alive.
Baroness Dean of Thornton-le-Fylde (Lab)
My Lords, I join other noble Members of this House in thanking sincerely Tessa, my noble friend Lady Jowell, for this debate. Rightly, people have talked about her courage. Those of us who know her know that she has had that for years. As a politician in the other place she would dare to tread where others would not even think of. I was pleased that the Sure Start scheme was mentioned, because it really is a legacy given to this country that has helped young children. So we are privileged today not only to have this debate but to have my noble friend Lady Jowell introduce it and speak from her personal experience.
I need to declare an interest: I am a trustee of University College hospitals foundation trust and was on the group that initiated what is now the Macmillan Cancer Centre, near the hospital. It took a lot of fundraising, but, linked with the hospital, we now have the proton beam therapy machine coming online, but it will not be until 2020. A proton beam therapy machine will come online at Christie’s in Manchester later this year. That is going to help. Since 2008, 400 of our young children have had to go abroad for treatment for cancer, because we have just not had the facilities in this country. Yet we are very good at making breakthroughs—the research, the innovation and all the rest of it. What goes wrong between that and touching the individual with cancer who needs help?
When we started that scheme, the statistics showed that one in three of us would suffer cancer during our lives. I gather that it is now one in two. It is a national challenge for us. As the noble Lord, Lord Turnberg, rightly said, it is not an easy one; it is quite difficult.
At the moment, we are trying to raise—it is almost peanuts—£0.75 million to buy a photodynamic therapy machine. In lung cancer, 60% of those who have pre-cancerous lesions in the lung go on to have cancer which is difficult, and in many cases impossible, to deal with. We are trying to raise the money to do that, and it is right that we should. As my noble friend said, it is not just about National Health Service money; it is about somehow bringing together everything we can to fight what is the scourge of the world today. It is not just in Britain; it is an international situation. Somehow, we have to get the researchers, the clinicians and all the profession together to make sure that we can deliver what my noble friend has said. Her arguments are unanswerable. I hope that the Minister does not just give us a list of what the Government are doing now; we want to know what they are going to do to respond to this important debate.
Lord Freyberg (CB)
My Lords, less common and rare cancers account for more than half of all cancers, but each is a small individual market and so under-researched. Be they brain or, in my sister’s case, mesothelioma, they suffer a chronic lack of innovation. I therefore commend the noble Baroness, Lady Jowell, for her bravery and the moving way in which she has brought these important issues to the House.
This country has a globally unique research asset that could make a difference. It is the cradle-to-grave records inside the NHS. We are uniquely placed to supply the insights on what works and what does not. This large-scale, real-world information could revolutionise care and research, especially health economic evaluation.
Yet researchers cannot get access. Let me explain, with some examples. The Brain Tumour Charity has been trying to unlock this data for their patients, 97% of whom want their data to be used for research. They have written informed consent, yet they have been met with official obstruction at every turn. NHS Digital wants £100,000 a year. Public Health England wants £378 an hour, and for information that would be more than a year out of date.
The same challenges affect those developing cures. In a recent survey, more than 80% of UK biotech companies said that NHS data and patients are a unique asset for the UK life sciences sector. However, almost all said that access to these insights was near impossible given current processes and policy, and that they were forced abroad.
We want to see the NHS improve patients’ lives through innovation. We are all aware that there is no infinite money tree from which to pay for such innovation and, as a result, we need timely and accurate evaluation based on real-world insights from within the NHS on what works and what does not. It is important to stress that decision-makers and researchers generally do not need access to patient-level data; they need access to privacy-conserving statistical insights such as, “Is treatment A or B more effective?”. Statistical technologies exist to do this routinely, and at very low cost, yet they are almost unknown in the NHS, which employs armies of human analysts instead.
We must get the policy and investment on real-world research right if we are to make effective use of these assets. It does not require primary legislation, but it does require joined-up thinking across health, business and research, and careful management of various internal vested interests. The creation of Health Data Research UK provides a unique opportunity to drive such alignment. Therefore, I ask the Minister to commit to using the life science sector deal to make this happen. Can he confirm the routine measurement of care outcomes in the NHS as his top priority, and clarify who will be in charge of co-ordinating and funding delivery for this critical cross-cutting agenda?
It has been a huge privilege to partake in the debate of the noble Baroness, Lady Jowell.
Lord O'Neill of Clackmannan (Lab)
My Lords, it is customary with debates like this to congratulate the mover on being able to secure the time. I do not know whether that is appropriate today, but I should like to pay tribute to Tessa for the courage and dignity with which she has addressed this issue.
I would like to talk from a self-interested point of view about prostate cancer. The first thing that you are told when you are diagnosed with this is that more people die with it than of it—that it is manageable—but that presupposes that you have been diagnosed. The point that I want to dwell on today is that the process of getting diagnosed and being aware is something that men in particular are not very good at. There are many men in this House who are currently suffering from prostate cancer. We do not go to the doctor frequently enough; we are not used to being prodded and probed in the way that ladies are; and we do not like the idea of the test, although the truth is that there is nothing much to the test. Those who do not like it are just big fearties, as we would say in Scotland, and the ones who do like it are easily pleased.
The treatment that I have received and the support that my family have enjoyed from the Western General in Edinburgh since 2014 have been exemplary. But I am concerned about the fact that far too many men are unaware of the signs of the condition. Many of us take statins and hypertension drugs that result in us getting up at night. We do not realise, or do not wish to see, that that nocturnalism could be cancer related. Therefore, I would like two things to be considered by the medical profession and the authorities—first, that there be a far greater public awareness campaign on the symptoms of prostate cancer and, secondly, a more proactive approach should be taken by GPs when they are prescribing drugs with diuretic side-effects. Far too many men become aware of the significance of their symptoms when it is getting late or, sadly, too late, and when the treatment of the condition is a great deal more expensive and, on occasions, quite unpleasant—and, certainly, not always successful.
Once again, Tessa, I thank you for giving us the opportunity to raise this issue in the manner in which you have done today. It is not an issue for party dispute but a social concern for a medical problem which is still intractable. We are not going to solve it tomorrow, but if we can save more lives more quickly and make those whose lives cannot be saved that much more comfortable, we will be fulfilling a very useful function and offer a great deal of support to the families that are so afflicted.
Baroness Redfern (Con)
My Lords, I thank the noble Baroness, Lady Jowell, for initiating this debate today—it is a privilege to take part and I thank her for her passionate, moving and very brave speech. I want today to support all cancer patients who wish to have the opportunity to be involved in clinical trials, as adaptive clinical trials are a promising way to develop new treatments by offering those patients multiple opportunities to test. Life expectancy has significantly improved but unfortunately in some cancer sites early intervention is more difficult; for example, as we have heard, brain cancer and pancreatic cancer, which my late husband suffered from. Those numbers are struggling to move. As we all know, cancer touches us all.
Today’s debate, however, brings attention to how important new innovative cancer treatments can offer life-changing outcomes. The NHS is working collaboratively with the life sciences sector to improve accountability and transparency in the take-up of innovation with the support of NICE, and that has to be welcomed. The NHS enjoys the benefits of SME contributions: many of the companies in the UK life sciences sector are small and medium-sized companies, so I am pleased that financial support has been given, with the help of the new £6 million government scheme, together with £34 million over four years provided to encourage and support those innovators to develop world-leading digital solutions. A good, supportive research environment in the UK is needed to ensure that the best research can be carried out to speed up the development of pioneering treatments, accelerating access to new medicine and benefiting from working with international collaboration on clinical trials: that must continue.
Flexible pricing mechanisms, such as outcomes-based pricing, would result in quicker decisions about approvals, with pricing based on a drug’s value to the NHS. Also, more emphasis must be placed on the genomic revolution to eliminate the one-size-fits-all approach to cancer treatment. I welcome NHS England’s steps to create a genomic medicine service to close the gap and ensure equitable access to molecular diagnostic testing for all patients across England. Good data sharing is paramount.
A cancer diagnosis can be, and is, frightening, distressing and confusing. As I said, it touches us all, whether it affects a loved one, friend or colleague. A much-needed shift in emphasis towards prevention and a clinical strategy march of medical science, together with a strong media campaign, must lead to increased longevity. Finally, cancer patients throughout their treatment are focused on staying alive as long as possible, so it is important that they are free to take more risks. I thank the noble Baroness, Lady Jowell, for her brave speech: this is about giving hope for everyone, all patients; it is about improving the cancer campaign and improving outcomes.
Lord Hunt of Kings Heath (Lab)
My Lords, I too thank my noble friend Lady Jowell for an extraordinary speech, full of passion, compassion and hope. I had the great privilege of following her as a Minister at the Department of Health: what a formidable reputation she had as our first Public Health Minister and what a legacy she left. Many of today’s public health programmes which are taken for granted she established in those first two crucial years. I do not know whether she knows that I have not quite forgiven her for her other big decision at Richmond House, which was to get rid of chocolate biscuits and bring in fruit bowls instead. What she does not know is that a certain Minister of State not a million miles from where she is sitting had a secret cache of those biscuits—my noble friend Lord Hutton became very popular for having meetings in his own ministerial room.
My noble friend Lady Jowell has raised a huge question about access for NHS patients to innovative treatments. In a sense, that is the great paradox of health in this country. We have an NHS that we are enormously proud of. It is still very well regarded internationally. We have an incredibly strong life sciences sector, with over £60 billion of turnover and over 200,000 high-quality jobs. We have one of the strongest pharmaceutical industries in the world: 25% of all global medicine is developed in the UK. Then, as the noble Baroness, Lady Dean, and my noble friend Lord Turnberg said, we have the great paradox; it is a British problem too. We have this great development, this great invention, but we are slow to adopt it. The experience of my noble friend Lady Jowell and so many other NHS patients is the same. If we look at other countries, such as Germany and France, we can see that their patients have much more access to innovative treatments than we do in this country.
When my noble friend was a Minister, she had the first discussions about the establishment of NICE, which was set up to deal with this British problem. It was calculated that it took 15 years for a proven new innovative treatment to be adopted generally in the health service. Here we are, nearly 20 years later, still facing the huge problem of innovation adoption. It is true that the Government have established the accelerated access review; they also have a life sciences strategy, post Brexit. However, we have to do much more. Of course finance is important, but the Minister will know that it is not just about finance—it is about attitude. I hope that the one message he will take away from this extraordinary debate and from my noble friend is that we have to do better in the NHS to adopt the huge innovation that so often takes place in our country.
Baroness Hayman (CB)
My Lords, like the noble Lord, Lord Blunkett, I have known the noble Baroness, Lady Jowell, for over 40 years. We met as young women, trying to make our way in the Labour Party and change the world. I never dreamed that we would end up as ministerial colleagues at the Department of Health or, two decades later, as fellow Members of your Lordships’ House today. What does not surprise me is that my very dear friend has shown unfathomable fortitude and determination in her current illness, or that her enduring commitment to the public good has led her to scrutinise the care we provide to those who have various forms of cancer—particularly obdurate ones like her own—and to campaign for improvements in that care.
Following on from the words of the noble Lord, Lord Hunt of Kings Heath, I believe that the UK has tremendous opportunities to make progress, even given the formidable challenges that these cancers present in terms of timing, precision of diagnosis and the development and evaluation of effective treatments. If we are to make that progress across the spectrum of prevention, detection, treatment and cure, we have to collaborate internationally. I hope the Minister will have some words to say about the EU clinical trials regulation that we expect in 2019. We also have to exploit all the resources we have; that includes the NHS and its scientific goldmine of information, which my noble friend has already referred to. That is one resource. Another is the Cambridge Biomedical Campus; I declare my interest as a recent chair of Cambridge University Health Partners. At that campus, we have world-leading research institutes, such as the Laboratory of Molecular Biology, Cancer Research UK and the Wellcome Sanger Institute, just down the road. We have great NHS hospitals: Addenbrooke’s now, and Papworth to come. We have leading international pharmaceutical companies, including AstraZeneca and GSK; and, of course, we have the University of Cambridge itself. The opportunities are enormous if these players can collaborate effectively.
There are exciting plans, led by Professor Richard Gilbertson, a world-leading expert in brain cancers in children, to build on the already impressive results in, for example, breast cancer, by creating a ground-breaking institute for early detection and a new cancer research hospital, bringing patients speedy access to the latest research and treatments. I hope the Department of Health will see this not as another simple NHS building project but as a real opportunity within the context of the life sciences strategy.
The noble Baroness, Lady Jay, cannot be here today as she is abroad. She asked me to say how sad she was to miss this opportunity and to pay some words of tribute to the noble Baroness, Lady Jowell. I think she would feel that the House has perhaps done her proud in paying that tribute. I started off by saying that, 40 years ago, Tessa wanted to change the world. The debate today illustrates clearly that her determination to do so is undiminished.
Baroness Goudie (Lab)
My Lords, I thank my noble and very good friend Tessa Jowell, whom I have been friends with for over 40 years, from our days on Camden and Brent councils and through many other campaigns for her to become a parliamentarian and so on. I find today’s debate on evaluating innovative cancer treatments very important.
Britain has a first-class reputation for research but, at the same time, we do not always manage to get the treatment to the patients as early as we should. A number of citizens from around the world want to come to Britain because they know that we have a good reputation for the research and treatment of cancer. It has to go further; there must be more sharing of research and data in Britain and around the world. This would save time and save lives. Travelling is tiring and dangerous for patients with cancer. We must have places of excellence in cities, so that people can at least get to them.
I would like to thank Athena Lamnisos, from the Eve Appeal, for her great work. I have worked closely with her. The Eve Appeal is the UK national charity raising awareness and funding research into five gynaecological cancers: ovarian, womb, cervical, vaginal and vulval. It was set up to save women’s lives by funding ground-breaking research and is focused on early detection and developing effective methods of risk prediction, as well as developing screening for women-only cancers. It is vital that the health service continues to fund screening, which must be made more widely available. Many lives will be saved if cancer is detected early. In the same way as my noble friend described issues surrounding prostate cancer, women also must not be afraid to go for these tests.
I would also like to thank Vanessa Elliott, consultant at St George’s Hospital, and Sarah Rudman, consultant oncologist at Guy’s and St Thomas’, who were very helpful to me in preparing for this debate. They thought that I would have hours to speak. I told them that it would be only three minutes, but they have been very helpful nevertheless. I hope that we will have a longer debate on cancer and the health service at some stage when I can talk at greater length. The Brain Tumour Charity and many others who contacted us all have explained how serious and important it is that cancer is dealt with as quickly as possible.
There are lots of imperfections in clinical trial design and the process could be improved. In oncology, they try to have good working relationships with pharma in order to be involved in the trial design process at the earliest opportunity. It is hoped that focusing on design will lead to a drug licence. Most of the time the pharmaceutical industry and clinicians are aligned, but not always. In general, though, the drug development process is still chunky. Traditionally, most trials still progress through phases 1, 2 and 3, which is expensive in terms of finance, nursing and doctors’ time and, importantly, patient effort. It is also time-consuming and may result in patients waiting too long for new treatments. We must ensure that when there are new treatments there is time available when patients are willing to experiment with those treatments.
In recent years, more innovative drug trials have been used in an attempt to reduce the length of the drug-development process. That is what can happen if we share around the world. It is important for patients also to have equitable access to the early phase of clinical trials. These trial units are often found only in large cancer centres, and not all patients have access to them. Well-enough patients who have exhausted conventional treatments and tumour-specific trials may want to access unlicensed drugs.
Lord Deighton (Con)
My Lords, my first experience of the courage of the noble Baroness, Lady Jowell, was watching her take on the Chancellor, Gordon Brown, to squeeze the Olympic budget out of him, which was as close as you can get to a combat sport. None of us who knows her is in the least surprised that she should see her cancer challenge as an opportunity to help other people. I thank her for shining her very bright light on this subject and I am delighted to work with her again.
I shall basically talk about science. I believe we are at a pivotal moment in cancer research. That is why for the past year I have been very involved with Cancer Research UK, which has been referred to a few times this afternoon, trying to help it think through how to raise privately all the money needed to capture the enormous opportunity presented by the spectacular advances in science and technology. I shall give noble Lords some examples: the improvements in genomics, the ability to harness our immune system in treatments and our ability to visualise what is going on inside tumours. We can also apply all the new technology we have. When I say things such as “AI”, “deep learning” and “machine learning”, noble Lords all nod and we all know what we are talking about. It means that we can generate and analyse massive amounts of data in a hugely helpful way for big patient trials around the world.
Quite simply, the goal of cancer research, which is what we are thinking about, is to exploit scientific developments—this has been mentioned a couple of times today—to improve 10-year survival outcomes: from two out of four to three out of four people. That is a nice simple goal. To accomplish this, there are three particular areas of focus that I shall bring to noble Lords’ attention. We have talked about the first one already. Cancer Research UK will now devote much more money and meaningfully shift talent and infrastructure to tackle the hard-to-treat cancers such as brain tumours, as well as lung cancer, pancreatic cancer, which killed my father, and oesophageal cancer. As everybody knows, to date, research in these areas, compared with, for example, bowel and breast cancer, has been very low and very thinly spread.
The second key area of work is personalised medicine. Doctors need to be armed with a detailed read-out of the molecular faults in a patient’s tumour, and to be armed with a new generation of drugs that precisely targets them—no more hit-and-miss and wait-and-see. An enormous amount is happening on this all around the world, as was commented on. There are great new treatments and smarter clinical trials. There is a big opportunity to get them properly co-ordinated so that we can get the most out of them; the current approach is much too fragmented.
The final work that I want to talk about is really revolutionary and most captures the changes in science we need to exploit. It is what we are calling the grand challenges. These are very big research grants, aimed simply at solving the biggest problems—the ones that will change people’s lives. They are doing it by bringing together the best scientific talent from around the world and from across different disciplines and forging them together to attack the big problems. I am really optimistic that that will produce world-changing outcomes. Our aim is to raise all the money for this privately, really by conveying to potential donors that, because of the science revolution, the opportunity is huge and it is now, so give us your money. I apologise for practising my pitch here, but we need to work on it.
My request to my noble friend the Minister is not for money but simply to help preserve the competitiveness of the UK’s research environment. I will leave noble Lords with one thought. After we leave the EU, it is essential that our future immigration system allows us to attract, recruit and retain global scientific talent at all professional levels, regardless of nationality. That is my number one ask.
I once again thank the noble Baroness—my dear friend Tessa—for shining her light, and long may it continue.
Lord Giddens (Lab)
My Lords, this has been a magical debate. I cannot remember anything quite like it in all my time in your Lordships’ House and I believe it will have a profound effect. I express my great admiration for my noble friend Lady Jowell: for her steely determination, her compassion and her humanity for other people. This debate will be seen in many different countries.
Quite a few years ago, the celebrated American biologist Stephen Jay Gould was diagnosed with mesothelioma, which is cancer derived from contact with asbestos. Doctors told him that he had only eight months to live—or that is what he thought they had told him, because this was the average survival period. He looked at this, as a statistician, and understood that what matters about an average is not just the average itself but the span of possibilities. He famously said:
“I am an optimist who tends to see the doughnut instead of the hole”.
He studied the evidence on survival rates, in a careful and sophisticated way, and his conclusion was that,
“those with positive attitudes, with a strong will and purpose for living, with commitment to struggle … and not just a passive acceptance of anything doctors say, tend to live longer”.
Stephen Jay Gould lived for 22 years after his diagnosis. Admittedly, this was through the supreme force of his will and his knowledgeability, but it shows that you must interrogate any diagnosis that is made. That is crucial; it was crucial for him. Moreover, his fame brought mesothelioma out of the shadows where it had languished for so long—a bit like with tobacco, there was a lot of industry resistance.
My glory was stolen a bit by the previous speaker, because I was going to conclude by saying that we are on the threshold of some of the greatest innovations ever made in medicine. These are coming very quickly. Why? Because of the algorithmic power of supercomputers; because doctors and medical researchers can share their research instantaneously across the world, which was not possible before the digital age; and because of linked advances in genomics and genetics. There is enormous hope. For example, the situation with myeloid leukaemia, which was thought to be incurable, is now quite different because of these research breakthroughs.
The main question to be asked of the Minister is the one that inspired the debate: will these breakthroughs be confined to the privileged few? The NHS is in the middle of a horrible crisis. The problems of the changing demographic structure of our society lie behind this. Will the Minister say, forcefully, that the treatment of relatively rare cancers such as brain cancer and mesothelioma will not suffer as a result of the situation in our health service, and that he will take direct measures to ensure this?
Baroness Walmsley (LD)
My Lords, this has been a unique, moving and effective debate. I am proud to be able to support the demands of the courageous noble Baroness, Lady Jowell.
In my three minutes I want to focus on two of her demands: early diagnosis and patient rights. Public Health England says:
“Diagnosing cancer earlier is one of the most important ways to improve cancer survival and we know that those patients who have their cancer diagnosed as an emergency have poorer outcomes”.
That is why new screening and diagnostic methods must be made available quickly.
In fact, I am standing here because of screening. I say to the noble Lord, Lord Turnberg, that I have had two as well; perhaps we should start a club. That shows how far we have come, does it not? Screening does not merely diagnose disease but can sometimes predict the risk of it through identifying gene mutations, as we have heard. Genomic screening can also contribute to treatment decisions by predicting how the tumour will respond to chemotherapy. That can avoid chemotherapy for those patients who will not benefit from it.
Diagnoses of colorectal cancer through the national bowel screening programme remain under 10%. This effective early diagnostic tool is not being used widely enough. Is that because CCGs are not offering the screening, or is it because people are not returning the samples? What are the Government doing to improve those figures?
I agree with the noble Baroness, Lady Jowell, that patients should have a great deal more say in the risks that they are prepared to take, and that adaptive trials should be allowed where they could help. I will not repeat many of the cancer-related examples that we are discussing today, but I shall give the House a non-cancer example of where the system is preventing a patient from receiving medicines that have already been shown to work, to illustrate that the problems that the noble Baroness has identified go wider than cancer.
A small boy, whom I will call A, has rare and serious epilepsy. He was treated, at great expense to the NHS, with powerful pharmaceutical drugs to stop his fits, although some of them were not even licensed for use on children. His condition did not improve and the doctors admitted the drugs could damage his vital organs and shorten his life. His parents heard of a similar case in Holland where a child was being treated successfully with cannabis-based medicines, which were licensed there.
Child A has now been receiving cannabis treatment in The Hague with enormous success. His doctor here is convinced of the safety and efficacy of these medicines, which are not licensed here, but is frightened to treat him with them because he is afraid that the GMC will strike him off. The family can no longer afford to remain in The Hague, yet the Home Office tells me that it will not grant a special licence for the treatment in the UK. This child could die of his fits. His parents would agree in a heartbeat for him to receive the medicines here, even though they are unlicensed. They know the risk is small and the benefits huge. They should have the right to make that decision for their child, just as the cancer patients mentioned by the noble Baroness should have the right to make decisions about risks and about their own treatment. What is the Minister going to do about that?
Baroness Thornton (Lab)
My Lords, at the beginning of this debate it became clear that we are dealing with one of those extraordinary parliamentary moments. In a way, I have a much easier job than the Minister today, so my sympathy is with him in answering this debate.
Are any of us surprised that when Tessa, my noble friend Lady Jowell, was diagnosed with what she called this “bloody tumour”, she tried with her usual courage, energy and vigour to try to improve the outcomes for all people with cancer? No, we are not, because this is the woman who, as the first ever Public Health Minister, promoted the tobacco control that we all now take for granted, facing outrage from the tobacco industry, its friends at the Sun and the Mail and, though probably less well-known to the public, many Back-Bench Labour MPs who thought pubs and clubs would go out of business if people were not allowed to drink in the smog created by cigarettes. “Nanny” was the label that the papers gave her at the time, but how many lives have been saved already as a result of my noble friend’s determination to do the right thing? The label of nanny was continued because of Sure Start—of course it was. But this is a woman whose determination led her to take on the Prime Minister and all comers to convince us that the Olympics should come to London, could come to London and, when they did so, to ensure, with others, that we all had an absolutely great time in 2012.
The reason I am reminding the House of these matters is not only because of my admiration for my friend Tessa. I am reminding the House, particularly the Minister, that in the face of opposition and scepticism, my noble friend will win through. She has proved to be correct time and again. I say to the Minister and the Government that they had better believe this noble Baroness and take what she is telling us very seriously. From the relatively modest suggestion that fluorescent dye to identify the tumour should be available in all brain surgery centres in England, which seems to me perfectly correct, to the more innovative—adaptive clinical trials, testing multiple treatments against a standard, which could speed up the introduction of new drugs as well as enabling existing ones to be repurposed, linked to a platform to share data across the world—my noble friend is saying: this is a demanding new paradigm, but the prize is surely worth the struggle.
The Government and all of us should follow her example and not be afraid to commit to making this happen.
The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord O'Shaughnessy) (Con)
My Lords, I begin by joining all Members of this House in paying fulsome tribute to the noble Baroness, not just for securing this debate today but for the extraordinary character she is showing by leading it. It has been a rich and moving discussion and, as the noble Lord, Lord Blunkett, said, it is extremely daunting to follow her and try to do justice to the requests and speech she has made, but it is also a privilege to be able to do that on behalf of the Government.
I also praise the noble Baroness for the determination that she has shown in raising the profile of issues around cancer treatment during the course of her illness. I think it is fair to say that she has inspired us all, and many cancer sufferers too, but I suppose we should expect nothing less from the woman who brought us the most wonderful Olympic and Paralympic Games in 2012.
I am also very grateful to the noble Baroness for sharing her speech, via the noble Baroness, Lady Thornton, and I have done everything I can to address in my response today the questions that she has asked. She will forgive me if there are any stones left unturned; perhaps we can pick them up afterwards.
As we have heard, every story about cancer is a personal one, but behind those stories lie some very stark numbers. As our population ages, the prevalence of cancer rises. One in two of us will get cancer at some stage in our life. The question is not so much how we stop that happening, but how we can diagnose and treat it more quickly and effectively, so that it moves from being a life-threatening disease to one that can be managed throughout a normal and happy lifetime.
We must be honest in saying we are not yet there. Historically, we have lagged behind the best performing countries in Europe, and catching up with those standards has been a focus for successive Governments, including this one.
There is good news. Things are getting better. In the past eight years, various actions, including the establishment of the cancer drugs fund, mean that there are about 7,000 people alive who would not have been otherwise, but, as we have heard, the benefits of these actions are spread unevenly. Survival rates for certain cancers are stubbornly low. Testicular cancer has been transformed into a nearly totally curable disease, but for other cancers—we have heard about oesophageal, stomach, pancreatic, lung, liver and, unfortunately, brain cancers—very little progress has been made. There is much still to do and we need to do better.
The first step towards achieving the world-class cancer outcomes we all want and which NHS patients rightly expect is to have a plan backed by the cancer community. As noble Lords will know, that plan was provided three years ago by the Independent Cancer Taskforce, which provided a cancer strategy aimed at saving 30,000 lives a year by 2020. It was truly a landmark moment. As any Government would have, the Government accepted the recommendations of the strategy and have backed it with funding.
It starts, of course, with prevention, and we have heard about the vigour with which the noble Baroness pursued public health and prevention when she was a Health Minister. Smoking and obesity remain the biggest preventable risk factors for cancer. That is why last year the Government introduced a childhood obesity strategy and a tobacco control plan for England. The truth is that we are making progress on smoking, and rates are coming down for almost every age group. However, we have a long way to go to tackle the obesity epidemic which we have not yet done. More courage is needed, I fear.
As the noble Baroness also said, early diagnosis is critical, and there are new early diagnosis standards, including a new 28-day faster-diagnosis standard. However, we all know that it is not just about targets but about bringing the best diagnostic tools and therapies into the NHS more quickly. There are also incredibly exciting discoveries in diagnostic science happening as we speak. I am sure that noble Lords will have heard about the successful trial of a blood test for cancers by a team at Johns Hopkins University, and we want our NHS to be able to bring on these kinds of innovations as quickly as possible. I am hopeful that our new accelerated access pathway, whose team meets for the first time next week and which becomes operative in April, will be looking at these kinds of technologies and will provide opportunities for them to come into the health service for NHS patients up to four years quicker than is currently the case.
At the centre of every cancer experience is a human being, their family and friends, with all the emotional and physical needs that attend. So it is right to expect that every patient is treated with compassion and dignity. The National Cancer Patient Experience Survey shows that more cancer patients are experiencing positive care overall, which is extremely welcome. I want to use this opportunity to pay tribute not only to the amazing NHS and care staff who deliver that care for cancer patients, but to our extraordinary range of charities and voluntary organisations. It is invidious to name some, but Macmillan Cancer Support, Cancer Research UK, The Brain Tumour Charity, and others provide outstanding support to people with, and recovering from, cancer.
Of course, their illness is not what defines cancer patients; life goes on, with its usual joys—if I heard the radio correctly, I think that for the noble Baroness that includes dancing—as well as its challenges. Making sure that life can go on as normal, or as close to normal as possible, is essential. At the moment, standards of care are high but there is local variation, and that is why there is a plan to create a national recovery package that is there for every cancer patient from the moment they are diagnosed. Inevitably, where the Government can make the most difference is in providing the necessary investment. I would like to highlight three examples of that investment, and shall attempt to avoid the list that Ministers often slip in to these kind of speeches. There are two areas where investment is really making an impact for cancer patients.
Elsewhere, the noble Baroness, Lady Jowell, has spoken about the surgery required to treat her cancer, which can be highly invasive and debilitating. There is major investment, I am pleased to say, in the modernisation of radiotherapy equipment taking place across England, including two new proton beam therapy centres. Combined with new approaches to surgery, it is hoped that that will bring benefits to around 6,000 brain tumour patients a year who will get access to less invasive surgeries. The noble Baroness specifically asked about the availability of a key florescent dye, and I can tell her it is called 5-ALA. It helps surgeons to see malignant tissue, so helps to ensure a more accurate surgical margin during surgery. We have spoken to NHS England in advance of this debate, which has committed to working with the cancer alliances and the brain cancer surgery centres to drive national uptake of its usage.
I also want to highlight another innovation or change, which is a big investment in the health infrastructure through 20 biomedical research centres in England. I had the opportunity to visit one of these last year at University College London Hospital, where I met some wonderful and very brave cancer patients who were among some of the very first people in the world to trial immuno and combined therapies, and they absolutely understand the importance of giving patients a choice about the ability to take risks when the prize is extra months of life with the people they love. These centres and their clinical research networks are now recruiting or have set up around 700 trials. I am just sorry that the noble Baroness was unable to find one in this country that she could access for her particular form of cancer. I can promise her that our determination, like hers, is that British cancer patients should not have to travel abroad to be part of trials or to access the kind of treatments that they need for their cancer.
Before closing, I want to address a number of the other issues raised by the noble Baroness during her speech. I absolutely agree with her that more investment is needed in cancer research for brain cancer. Making that happen is a specific objective of the departmental working group that has been operating under our Chief Scientific Adviser, Professor Chris Whitty. I can confirm that this group will deliver its final report to me next Wednesday, and I can also say today that one action stemming from that will be a highlight notice from the National Institute for Health Research to encourage researchers to submit applications for funding in the specific area of brain cancer research. I hope that some of the interesting ideas and research projects going on today will look at that opportunity so that we get more funding into this important area.
The noble Baroness also talked about the importance of adaptive trials. I am again pleased to report that they form a growing proportion of the clinical research network’s portfolio and are mainly in cancer trials. We undoubtedly need to be more radical in this, and the noble Baroness has provided a specific suggestion. I would be delighted to meet the director of the ECI, and I am thrilled that he is here today to hear the debate.
There has been, as the noble Baroness pointed out, a lack of new brain cancer drugs. Again, we have been in touch with the National Institute for Health and Care Excellence—I did not know that she had a role in its founding—about this. I am informed that there are a number of drugs in development specifically for glioblastoma and NICE has committed to publishing draft guidance on these drugs before they receive a licence. Drugs recommended in the draft guidance will be funded from the point of licensing, which brings forward the opportunity to use them by many months.
The noble Baroness also talked about the importance of data and having access to data. I could not agree more. As we know, one of the wonderful things about the NHS is that it is here for all of us, all the time. One quirk of the way that it was set up—I am not sure that Nye Bevan intended it, but it is certainly a benefit—is that it has an unrivalled dataset on patients’ medical experiences and journeys, which is invaluable to the research community. We all know that we have not always got policy right in this area or brought the public with us about the benefits of sharing data, but there are some key decisions coming up in the next few months to help us to access and create that dataset for research purposes. I warmly welcome the opportunity to engage with the noble Baroness and other noble Lords to make sure that we can win the argument with the public about sharing data for the benefit of not just ourselves but one another.
There have been many questions from noble Lords, and I hope that they will forgive me for not trying to answer all of them in the interests of time. I will of course write to any noble Lords whom I have not answered specifically. I just want to highlight three other things. First, genomic medicine and its potential in combination with artificial intelligence and machine learning have been mentioned. We have a set of 5,000 whole cancer genome sequences—believe it or not, that is the biggest set in the world. But, thinking about the number of people getting cancer every year, we need to do much better on this. There are big ambitions here, and I hope to use the opportunity of the NHS’s 70th birthday to make real progress in something ambitious in this area.
Several noble Lords asked about the Lords’ sustainability report. The department is perhaps not shown in its best light in how late the response has been. It will be published very soon, I can promise that. The issue of taxation has also been raised. I hope that noble Lords will forgive me if I say that is above my pay grade. They may also have noticed, however, that the Secretary of State for Health and Social Care has been here throughout the whole debate and listening intently. So I am looking to him, as I know that he will be making a case across government.
Finally, I have been a Minister for long enough to know that you cannot have a debate without talking about Brexit—so let us make it quick and positive. Clinical trials have been mentioned, but we should also mention medicine regulation. The Government’s intention, going into that negotiation, is to have a new way to create the same kind of partnership that we have now, not just for the good of patients in this country but for those across the EU as well. That is our intention and we think that is the right thing to do.
To close, I would like to talk about a word on which the noble Baroness focused towards the end of her speech, and that word is “Hope”—it also happens to be the name of my youngest daughter. The NHS symbolises many noble ideas—reassurance, compassion and service to others—but more than anything it provides people with hope: hope of a better life and more years enjoyed, not just for themselves but for those they hold dear: hope for a better today and for a better tomorrow.
What the noble Baroness has done today is to offer hope. With her courage in calling and leading this debate, and with her ever-fertile mind making suggestions for how we can improve cancer care, she raises our sights and demands that, collectively, we work harder to offer hope to people affected by the terrible disease she suffers with such dignity. It is the right challenge, and one I am prepared to accept on behalf of the Government. In doing so, I promise her that our efforts will not waver until the scourge of cancer no longer robs us of the ones we love.
Baroness Jowell
I thank the Minister very much indeed for a really inspiring and excellent summary of our discussion. Obviously, I would like to thank everybody else who has considered, and taken part in, the discussion today. I feel that we have made real progress forward. It happens very rarely in this sort of way and I am absolutely delighted and grateful to everybody for their contributions and for the support that the Minister will continue to have. I thank my very dear, long-standing friend, the Secretary of State. He will keep his own—I always have a problem talking about this but he will know exactly what I am talking about. Everything will be done as we hope it will, so thank you very much indeed. Now we look forward to the progress.
Baroness Chisholm of Owlpen (Con)
My Lords, on a momentous day, I beg to move that we adjourn the House.