Stevens-Johnson Syndrome and Toxic Epidermal Necrolysis

George Freeman Excerpts

Wednesday 13th July 2016 Westminster Hall

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

It is a pleasure to serve under your chairmanship, Mrs Gillan, not least because on other occasions you have been a doughty champion of campaigns on rare diseases. It is also a pleasure to respond to the debate. I congratulate the right hon. Member for Barking (Dame Margaret Hodge) on obtaining it and thank her for raising the issue. It is my great privilege as the Minister for rare diseases to be educated every time we have such a debate. A process of huge preparations is triggered in the Department, so already, just by raising the issue, the right hon. Lady has struck a blow and alerted the machine to the condition and its causes. However, I want to go further.

Perhaps, as this is the day when we say farewell to the Prime Minister, I may pay tribute to his personal leadership in the field of medical research, and to his unleashing of UK leadership, building on what happened under previous Administrations. The Labour Government did a lot of great work setting up the National Institute for Health Research, but because of the Prime Minister’s experience with genetic conditions in his family he has been an incredible champion of genomics and of rare disease science and research. As he leaves I want to state that that is one of his great legacies. It has been my privilege to be his first Minister for Life Sciences, with the purpose of driving forward that quiet revolution and UK leadership.

I also want to pay tribute to SJS Awareness. As with so many rare conditions, it is charities and patient groups, the patients and victims of diseases, who take the early steps in speaking up, raising money, rattling tins, having raffles and raising awareness, which in the end lead, as I see often, to huge progress and advances in research and treatment. I encourage them to continue and not to give up. I hope that what I will say will send a good signal.

The truth is that the debate on this condition shows up a wider issue throughout the biomedical research community. The more we know about disease and how patients respond to drugs, the more we realise how many conditions there are. We discover them literally each month through the UK genome project, at a faster and faster pace, and that is changing the way drug discovery works, and the way the system thinks of conditions. The old model of diagnosing on a standard understanding of X number of conditions with clear symptoms no longer holds. We must, as the right hon. Lady said, think about how we will help a new generation of clinicians to have at their fingertips the genomics, data and informatics to be able to recognise conditions and triage patients into the right treatment.

The Government take the issue of rare disease treatment incredibly seriously, and that is why we have worked with NHS England on launching the UK rare diseases strategy. There are now 51 recommendations. It is not just a brochure; it is a serious document with commitments and an action plan. Although the number of rare disease patients suffering from a particular condition may be small—the one that we are considering affects about 150 patients a year—collectively more than 3 million people in the UK suffer from rare diseases, so they are not rare; they are very common, and they are experienced by a huge number of people. It is only fair that the system should recognise that, and start to adjust and adapt towards the mainstreaming of provision for people with rare diseases.

Research is, of course, vital, which is why the £1 billion a year that we spend on the National Institute for Health Research, the £850 million for the Medical Research Council and the £1.4 billion spent by the Association of Medical Research Charities and its members is so important. That underpins UK leadership in this space, and it is even more important for rare conditions such as Stevens-Johnson syndrome. There are some encouraging research projects under way which I want to highlight, partly because I think they give hope to patients and charities.

The National Institute for Health Research clinical research network is supporting the MOLGEN trial. It is actively recruiting patients from across 80 NHS trusts who have experienced adverse drug reactions. That study has already recruited 1,740 participants and plans to continue recruiting patients until February 2019 with an eventual aim of accurately predicting those patients at risk of developing severe reactions, including Stevens-Johnson syndrome.

Further research that is likely to benefit those with the syndrome include the 10-year study of chronic eye inflammation, including SJS, which is being taken forward by the NIHR clinical research network in the west midlands. That has recruited 224 patients to date and will continue until 2021. The MRC Centre for Drug Safety Science at the University of Liverpool is doing powerful work in this field and has already been instrumental in identifying some of the genetic markers that indicate that a patient group are at an increased risk of developing the condition. The progress we are making in genetics generally, in terms of deep science, diagnosis and genetics for new cures, holds real hope. Being realistic, that is not hope for those patients who are in that excruciating agony that the right hon. Lady powerfully described in the words of one of her constituents.

While patients with SJS are more likely to be identified earlier and receive the best forms of clinical management, we want to prevent the condition in the first place by understanding the underlying genetic causes. That is why we are so committed to the 100,000 Genomes Project. For those who are not aware of it, it was led and inspired by the Prime Minister. I describe it as the NASA of UK biomedical research. It is our world-leading project to take 100,000 entire, fully sequenced genomes from NHS volunteers and combine them with phenotypic hospital data to form a global reference library for understanding the genetic predispositions for both disease and drug reactions. It is that combination of the living medical record of patients at scale with their genomic information at scale that allows us to understand those genetic mutations, which are often not associated with a particular condition so are not studied. When we have the whole genome at scale we can see, for example, the reason why 20% of patients respond to a certain drug in a certain way is that all of them have a genetic variation, which we had not realised, in a sequence that nobody had realised was associated with that disease.

Although we are only partially through sequencing the first genomes, we are already identifying extraordinary insights into rare diseases. I saw recently, when meeting the informatics team at Genomics England, a man who had presented with a rare blindness disease. It presents in teenage years with early onset blindness and can lead to mortality at around the age of 40. He has two young boys. He volunteered for the programme and the scientists quickly identified five possible variations that may have accounted for the condition, of which they were able to knock out four that had nothing to do with the eye. One was a pathway related to the eye and on that information alone they were able to recognise that that pathway is one that is implicated in the disease, for which there is already a treatment that is available at pence as a generic. With the patient’s consent they decided to try it and the drug arrested the condition.

That is an extraordinary breakthrough that was based on genomics simply allowing us to understand, initially quite randomly, how to prevent that condition, though we have not got a cure for it. We have identified in the haystack of the pharmacopeia of drugs one that has already worked. The genome programme is already identifying early treatments that are giving patients with rare diseases real hope. I am delighted to say that while the programme is a bit behind on the recruitment and sequencing of cancer genomes, for a whole series of operational reasons, it is steaming ahead on rare diseases. The UK is driving world leadership in that space. I was recently in Washington and met the White House precision medicine team, which is looking to us for a steer on how to use genomics to drive rare disease treatment and diagnosis.

[Dame Margaret Hodge]

To be specific about SJS, are there volunteers who have the condition, or relatives of volunteers who have it, in that sample? I do not know what is appropriate; I am not a great scientist, but that would seem to me to be a very useful way of progressing on this particular rare disease, though I recognise it is one of many. Does the Minister know?

[George Freeman]

The right hon. Lady read my mind. I do not have that information at my fingertips but I have already asked that question and I will happily ask Genomics England to ensure that she and I have that answer. I will touch on the point she made about awareness because I think there is an opportunity for us to use the genomic programme to trigger greater awareness among those who suffer from rare diseases, and possibly to drive up recruitment rates for the programme.

Let me touch on the NHS rare diseases advisory group, which recently noted that SJS is a devastating disease with a very high mortality rate, and endorsed the proposal for a highly specialised service for SJS and toxic epidermal necrolysis. The intention is for a nationally commissioned service to standardise treatment around the country in a small number of expert centres. Those proposals include a network of centres for both treatment and research and for using the diagnostic material to support that research. The establishment of a national service should make it possible to implement the national guidelines for patient care that were published by the British Association of Dermatologists just last month.

The Government absolutely recognise the long-term impact of SJS on survivors and their families. That is why we are putting not just research but patient support and a patient voice at the heart of the UK strategy for rare diseases. It is crucial that people who suffer from conditions like these are able to both feel that their suffering is not in vein and that they are being listened to and supporting research, and also that they are helping to drive new care pathways.

I will address the specific questions the right hon. Lady asked. She talked about lack of awareness and training. She is absolutely right that that is a major issue for our health system because the more we discover those rare diseases, the more we have a real challenge to keep our medical students up to date. In the old days we trained medics for the conditions that we understood but, because of the pace of discovery now, we have discovered new diseases that were not known when their textbooks were published before they have even finished a year at medical school. That is a challenge for the whole system and I will raise that important point with the relevant agencies who are in charge of training to ensure that they are address it.

[Dame Margaret Hodge]

I take that point but I draw to the Minister’s attention the fact that this disease was identified in 1922; it is not entirely new. Early identification means the drug that is causing the problem is withdrawn and the more appropriate treatment can be started. I hope the Minister can go a little bit further.

[George Freeman]

Many of these conditions have been known about for years, but it is only now that we are really beginning, through genomics and infomatics, to get a handle on how we might track, spot earlier and use big data to analyse cause and effect and develop new medicines that could intervene. Some of these conditions that have been thought of as never treatable are now becoming treatable because of the pace of biomedical progress. We need to inform our trainee clinicians not to think, “Well, I’m sorry. You’ve got a diagnosis; there is nothing we can do about it. People have suffered for 80 years.” There is a genomics programme, an accelerated access review for new medicines and an early access to medicines scheme, and we are beginning to accelerate getting new cures through into treatment. I will raise the issue of greater awareness of rare disease and what is available for them with the agencies responsible for training medical students.

The right hon. Lady raised the idea of an awareness week, which I think is an excellent idea. The truth is there are many rare diseases and I foresee a clamour for every rare disease to have a week, for which there would not be enough weeks in the year. It may be that one has a rare dermatological conditions awareness week, which would heighten awareness. There may be different ways to do that but her idea is first class. She also talked about money for research; she would not be doing her job if she did not. The Government spend a considerable amount of money on research. The NIHR has a policy of not identifying particular diseases and earmarking money to them but, following the debate, I will raise with the NIHR how much is being spent that would be relevant for sufferers of SJS. I know it is taking steps to amend its research criteria in the years ahead so that it is responding to the progress made in the genomics programme and others.

The right hon. Lady made an excellent point about gene testing. The reason I am so inspired by that quiet revolution is that we are now at a point at which we can start to gene test patients, profile them and get targeted medicines to them. That is already happening with cancer and some other diseases. For the new drugs we have launched in the NHS this year for Hep C, it turns out we can profile which patients will respond in six weeks, in eight weeks or in 12 weeks. That is driving a new model of reimbursement that sits at the heart of my accelerated access review.

Lastly, the right hon. Lady raised the important issue of side effects and the wider science of drug side effects, which the Government are investing in through a whole series of programmes in the Department of Health and NHS England. Understanding side effects can be a cue to the science of new cures. I hope she is reassured that we are taking that seriously and I will follow up—or will ensure my successor follows up, if I am no longer in post after today—the points she has sensibly raised.

[Mrs Cheryl Gillan (in the Chair)]

Order.

Motion lapsed (Standing Order No. 10(6)).

Blood Cancers

George Freeman Excerpts

Thursday 7th July 2016 Westminster Hall

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

It is a great pleasure to serve under your chairmanship, Mr Walker. I thank and congratulate the hon. Member for Strangford (Jim Shannon) and my hon. Friend the Member for Crawley (Henry Smith) on setting up the all-party parliamentary group and initiating this debate. It is another example of Westminster Hall providing an important forum as an adjunct to the main Chamber for hon. Members to raise specialist issues, and I welcome it hugely. I thank Members from all parties who have spoken. Again, it is an example of the House at its best, working together in a non-partisan way on an issue that our constituents want us to see is important.

While I am here, I take the opportunity to welcome the hon. Member for Hackney North and Stoke Newington (Ms Abbott) to her role as shadow Health Secretary. I look forward to working with her here and in the main Chamber.

I pay tribute to Bloodwise and other charities that work in the blood cancer space. Charities are playing an increasingly important role in the sector; the Association of Medical Research Charities recently released figures that show that our charities now invest more than £1.4 billion a year in medical research. That puts them above any of our UK pharma companies. Charities make a major sectoral contribution, not only with their research but by advocating on behalf of their patients, driving care pathway reform and leading and supporting integrated care pathway initiatives with NHS England. I put on record our gratitude to them for that work.

I congratulate Members on setting up the new APPG, which has a really important role to play, working with parliamentarians, Government and everybody involved in the blood cancer community, in ensuring that the voice of blood cancer patients is heard here in Westminster and that policies affecting blood cancer patients, their families and carers are patient-centred and evidence-based.

The word “cancer”, as you know Mr Walker, still strikes fear into people’s hearts up and down the land. The truth is that, through extraordinary biomedical advances and treatment improvements, more than 850,000 people are now living and working with cancer. It has become a treatable condition. Some cancers are now preventable with early screening and intervention—for example, there have been stunning breakthroughs in breast cancer, which now has a full survival rate of more than 95%. But other cancers, particularly some of the rarer cancers, still strike fear into people’s hearts, which is partly why I welcome this debate and the increasing number of debates in Westminster Hall on specialist and rare diseases.

Most Members present will have experienced the diagnosis of a family member or a loved one. We have heard powerful contributions from colleagues about that; I too experienced it when my sadly late mother-in-law was diagnosed with chronic myeloid leukaemia. My wife and our family had to watch the tragedy of a young, wonderful, healthy grandmother leaving us. Members have spoken with great passion about the need for us to do everything we can to speed up research and ensure that those people have not died in vain—that their experience helps others to avoid similar suffering. That is why the availability of effective drugs and other cancer treatments is so important to us all and why it drives me in my work as Minister for Life Sciences.

Let me set out how the Department views blood cancers and how they are grouped together, because that shapes our policy on research and treatment. Haematological or blood cancer is a term used to describe a range of cancers that affect the blood, bone marrow, lymph or lymphatic system. The symptoms can be quite vague and many of them, such as tiredness, fever, lumps or an infection, are similar to those for colds or other much less serious illnesses. I repeat the exhortations of other hon. Members: if in doubt, go and see a doctor early for a check-up.

The charity Bloodwise estimates that around 230,000 people are now living with blood cancer in the UK. It is the fifth most common cancer in UK adults and the most common in children and young adults. It is the third biggest killer.

There are three main kinds of blood cancer. The first is leukaemias, which affect the white blood cells that are so vital to our immune system—the police of our blood system, if you like. Leukaemias include four main types: acute myeloid leukaemia, acute lymphoblastic leukaemia, chronic myeloid leukaemia and chronic lymphocytic leukaemia. The second kind of blood cancer is lymphomas, which affect the lymphatic system—another crucial part of our immune system that helps to protect the body from infection and disease. The two main types are non-Hodgkin lymphoma and Hodgkin lymphoma. The third kind of blood cancer is myelomas, which affect the plasma cells that produce antibodies, which help fight infections.

Across those three core groups, there are more than 130 different blood cancer conditions. Most start in the bone marrow, where blood is made; many different types of blood cells are made in the bone marrow, with the type of blood cancer depending on the type of blood cell that is affected. In most blood cancers, the affected blood cells stop developing in the normal way and become cancerous. The cancerous cells stop the blood doing what it normally does, such as fighting off infections. I am conscious that Members present are probably familiar with this, but many watching may not be, and it is important that people understand what the underlying symptoms and causes of the condition are. Common treatments are chemotherapy, radiotherapy and, in some cases, a stem cell or bone marrow transplant.

Many people throughout the country are working hard to improve cancer diagnosis, treatment and care. In particular, I draw attention to the work of some of the pioneers— Bloodwise, Anthony Nolan and Myeloma UK should all be applauded. The work of those charities is also supported by the UK’s world-class scientific and academic life sciences research community, which is driving forward patient-centred research into blood cancers. Let me highlight a few groundbreaking centres that can give us all a lot of hope.

The Francis Crick Institute here in London—the flagship biomedical centre next to King’s Cross—hosts Dominique Bonnet’s programme. Dominique’s team is studying both normal and leukaemic blood stem cell biology and has published work in developing immunotherapeutic approaches to targeting leukaemia. A number of other groups are studying the development of cancers and identifying opportunities to develop novel therapeutic approaches more broadly.

Blood cancer is a key theme behind the Medical Research Council’s £30 million funding over five years for the molecular haematology unit at the University of Oxford, which I am visiting tomorrow. The unit is building on its programmes to understand the development of the blood system from the embryo through to adulthood and how that can go awry, leading to a variety of haematological malignancies, as well as a number of other disorders.

Similar programmes in understanding the development of the blood system and the pathogenesis of blood cancers are supported by the Wellcome Trust-Medical Research Council Cambridge Stem Cell Institute, now under review at the end of its first five-year review period. The institute originally received an £8 million award over five years from the funders, with a strong push to translate those discoveries into clinical application.

The MRC centre for regenerative medicine hosts a number of programmes to improve understanding of the developmental biology of the haematological system and of stem cell compartments, how stem cells go on to make adult blood components and how that can go wrong and lead to leukaemias.

I make particular mention of the work of Professor Charlie Craddock, director of the blood and marrow transplant unit at University Hospitals Birmingham NHS Foundation Trust, who leads the trials acceleration programme, funded by Bloodwise and supported through the National Institute for Health Research experimental cancer medicine centre funding and its clinical research network.

In the last decade, a wave of new drug and transplant therapies have been developed that offer the prospect of dramatically improving the outcomes for patients with blood cancers. It is important that we get those therapies to patients quickly, not only for the patients’ own benefit but because patients’ response, feedback and data drive intelligent research.

The trials acceleration programme was opened in 2011 specifically to address the vital importance of accelerating patient access to novel therapies in blood cancer. By funding a regulatory hub with the capacity to rapidly work up clinical trials of novel agents, coupled with an integrated network of research nurses at major leukaemia units throughout the UK, it has been possible to develop an internationally competitive portfolio of 17 clinical trials. Experience to date has shown that the trials acceleration programme is able to dramatically shorten the time to trial set-up: it is now routinely less than 12 months, which is a substantial breakthrough from where we were just a few years ago.

Professor Craddock tells me that, in the process, patients have accessed more than £150 million of new, potentially life-saving drugs that they would not otherwise have had access to, and vital new data concerning drug activity have been generated. The trials acceleration programme has proved itself a highly effective model for acceleration of new drug therapies, and it is partly those pioneering projects that have informed my thinking on the accelerated access review, which I will say more about in a moment.

The National Institute for Health Research, which we fund to the tune of £1 billion a year, is investing more than £4 million over five years in blood disorder research at the Oxford Biomedical Research Centre, including research into lymphoma, leukaemia and myeloma. In addition, the Department has allocated £200,000 to NHS Blood and Transplant to explore issues on the establishment of UPTAKE, a new research collaboration platform designed to work closely with the NIHR clinical research network to develop and deliver prospective clinical trials in transplant and cellular immunotherapy.

We are leading in the development of genomics to drive insights into new diagnostic and treatment methodologies. The 100,000 genomes project is assembling one of the world’s largest datasets of genomic and phenotypic data, linking hospital outcome data with genotypic data from patient volunteers to provide what I have referred to elsewhere as the NASA of 21st century personalised biomedicine. The focus is on cancer and rare diseases.

This is a good day to be having this debate because just yesterday Dame Fiona Caldicott reported back to the Secretary of State and me. We had asked for her thoughts on how we get the balance right on data security consent and opt-outs so that we can harness patient and public trust in the use of data in our health service for research.

[Ms Abbott]

I listened with interest to the Minister, citing several organisations that speak up on the issue of blood cancer. I draw his attention to the African-Caribbean Leukaemia Trust, which had done a lot of good work encouraging people from the African-Caribbean community to donate blood—their chances of getting a properly matching blood donor are extremely low. The trust was founded by Beverley De-Gale and Orin Lewis, whose six-year-old son was diagnosed with leukaemia. I would not want the debate to finish without their work being mentioned.

[George Freeman]

The hon. Lady makes an excellent point. I thank her for it and endorse her sentiments. In several research areas important initiatives have been taken by black and minority ethnic and other communities with particular genetic predispositions. It is important that we support those initiatives, which I very much welcome.

The Genomics England programme operates on an explicit volunteer consent model. I want to take this opportunity to reassure the House that our announcement that we are dropping the care.data programme, which most colleagues would admit was not exactly an award-winning exercise in carrying public trust and confidence in data, is by no means, and should not be mistaken for, an abandonment of our commitment to a digital NHS. We are completely committed to making sure that our NHS is fit for purpose in the 21st century, which means that, in order to fulfil the most basic contract with our users, we need to have information for individual care, for system safety and performance and for research.

Raising awareness is the central issue of the motion. I assure Members that raising awareness and improving the early diagnosis of cancer, particularly blood cancers, is a priority for the Government. We absolutely recognise that earlier diagnosis makes it more likely that patients will receive effective treatments. On average, GPs in England see fewer than eight new cancer cases per year, but many more patients present with symptoms that could be cancer. In truth, we are missing huge opportunities to harness our daily diagnostic footprint for better cancer diagnosis.

In order to continue to support GPs to identify patients whose symptoms may indicate cancer and urgently refer them as appropriate, the National Institute for Health and Care Excellence published an updated suspected cancer referral guideline in June 2015, which includes new recommendations for haematological cancers in adults and children and young people. NICE noted that more lives could be saved each year in England if GPs simply followed the new guideline, which encourages GPs to think about cancer sooner and lowers the referral threshold.

Following the publication of the updated guideline, the Royal College of General Practitioners has worked in collaboration with Cancer Research UK on a programme of regional update events for GPs, to promote the new guideline. They have also worked to develop summary referral guidelines for GPs, including by introducing an interactive desk easel for them, to enable them to adopt the guideline. The British Medical Journal has also published summaries. In addition, NHS England’s Accelerate, Co-ordinate, Evaluate—ACE—pilots are exploring new models for delivering a diagnosis more quickly and effectively, including by piloting a multi-disciplinary diagnostic centre, which we hope will be particularly effective for patients with vague or unclear symptoms.

In conjunction with the Department, NHS England and other stakeholders, Public Health England currently runs the Be Clear on Cancer campaigns, which are designed to raise the public’s awareness of specific cancer symptoms and encourage people with those symptoms to go to the doctor at an earlier stage, when cancer is more treatable. Mr Walker, I know that you are a great champion of male health issues and have worked against stigma in health, and it is very often men who are slow to present and who tend to feel the stigma and take the traditional view, saying, “I’ll only go when I have a real problem.” The enlightened fairer sex tends to go to the doctor quicker. It is important that we remind men to be quick to go to the doctor.

[Maggie Throup]

The Minister is right to say that there are some really good promotional campaigns that raise the profile of different healthcare issues. The campaign to detect strokes early on, Act F.A.S.T., was a good one. Some of the other campaigns, such as those to raise awareness about lung and colon cancer, are also really good, but the hidden nature of blood cancers makes things harder. Does the Minister agree that we should try to raise the profile of the symptoms?

[George Freeman]

I completely agree with my hon. Friend. As she has made clear, and as I repeated earlier, it is tricky because the symptoms are not always straightforward or simple. It is often not a lump or something that is easily detectable, and the symptoms can easily be confused with those of other conditions that many of us might all too easily brush off and dismiss as the result of tiredness, fatigue and the general pressures of modern life. It is important that people recognise the symptoms. The all-party group and this debate will help to underline the importance of being aware of the early symptoms.

So far there have been 11 national Be Clear on Cancer campaigns covering seven types of cancer, and a national respiratory symptoms campaign will run from July to October this year to raise awareness of lung disease. I shall obviously ensure that the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison) is aware of this debate and will make clear to her the cross-party support for greater awareness of blood cancers.

[Jim Shannon]

I am not sure whether this is the Minister’s responsibility, but those of us who have participated in the debate are very aware of the issues relating to the accelerated access review. We are keen to know whether there could be a review of the scheme and of access to drugs. Even if the review were to resolve the many issues surrounding the speed with which new medicines are evaluated by NICE, unless there is meaningful change to the final decision-making process, new medicines will fail to reach patients. I suspect that is the Minister’s responsibility, but he can confirm that. How can we improve the accelerated access review? I know the Minister will have a good answer and I want to give him an opportunity to share it.

[George Freeman]

I am grateful to the hon. Gentleman for reading my mind—not for the first time—because the next paragraph in my speech is about the cancer drugs fund and the accelerated access review. His intervention gives me a moment to highlight some of the important points that colleagues have made. The hon. Gentleman, who is something of a biomedical stalker of mine on these occasions, as he acknowledged—we rarely appear in this House other than together—was right to highlight the great work that Queen’s University Belfast does on blood cancers. He spoke with great passion about his father’s experience.

My hon. Friend the Member for Erewash (Maggie Throup) spoke about her experience as a haematologist in this field and about being involved on the frontline of research. That is another example of the power of having Members with a range of career backgrounds in the House. She brings great expertise to these matters.

The hon. Member for Coventry North East (Colleen Fletcher), who is vice-chair of the all-party group, made some important points about the CDF, to which I will return, and described the experience of her husband Ian. She asked whether I would meet the Anthony Nolan Trust; I will. I have already had several meetings with the trust and will continue to meet it, and when I do, I will pick up on the issues she mentioned relating to post-transplantation care in particular.

My hon. Friend the Member for Crawley spoke powerfully about his mother’s experience and made some really important points, not least about data and the importance of our harnessing it and generating a new model of appraisal. I will pick up on the latter point when I discuss the accelerated access review.

The hon. Member for Linlithgow and East Falkirk (Martyn Day) discussed NICE and how important it is that we tackle the new landscape and make sure we are quicker and better at assessing new medicines. The hon. Member for Hackney North and Stoke Newington raised several important issues in a spirit of cross-party non-partisanship that I hugely welcome and appreciate.

I return to the cancer drugs fund. At the beginning of the previous Parliament, the Government, led by the Prime Minister, made the important commitment that we would put in place a cancer drugs fund to ensure that UK patients got access to the very latest cancer drug treatments. We did that in response to a number of high-profile cases in which NICE, applying its standard, one-size-fits-all quality-adjusted life year, had turned down cancer drugs, and patients were desperate for some hope, wanting the system to be responsive to their needs.

I am proud that we have made a total commitment of more than £1 billion to the cancer drugs fund and that we are continuing to invest each year, with more than £300 million put in this year. However, the system as it was originally set up has not proved to be sustainable, because of the pressure—inevitable pressure, in some ways, given the extraordinary explosion of our medical advances—put on it. If drug companies are turned down by NICE and there is a fund available for a post-NICE approval, the companies simply go to it and it has become over-subscribed.

NHS England has moved in the right direction by taking our funding commitment and repositioning the CDF as an early access and managed-access fund that examines more innovative drugs, ensures that they are provided to patients more quickly and makes sure that the data from that early access is allowed to inform the selection of the drugs that are adopted.

The truth is that breakthroughs in 21st century drug discovery and the rise of better targeted medicines are bringing huge benefits for patients but they also place huge pressure on our traditional models of assessment, adoption and reimbursement. With a rapidly ageing society and an explosion of new treatments, we cannot continue with the old model of one size fits all, with the NHS acting as a late procurer at a retail price of every drug. At the heart of my portfolio is a mission to unleash the power of the NHS as a research partner in bringing new drugs to market and getting a dividend—a discount—in return for that work.

We spend around £14 billion on medicines in the NHS every year and over £5.5 billion of that is spent on cancer drugs. The new generation of cancer therapies are incredibly exciting. The immunotherapies that we are seeing do not just delay death or grant patients a few extra months or years; they are cures for cancer. Those Daily Mail headlines that have been promising cures for cancers for more than 20 years are finally true. We now have cancer cures coming through, which profoundly changes the way that we will have to price drugs.

Let me say something about the accelerated access review, NICE and the CDF. At the heart of the accelerated access review is a commitment from the Government to consider whether and how we can better harness our extraordinary NHS assets as an integrated healthcare system to become a partner in the development of new therapies, so that instead of the industry treating the NHS as an increasingly pressurised retail-based consumer that struggles with this explosion of ever more expensive technology, we become a partner. Then, in return for sharing our clinical assets, for working with charities and the industry around our £1 billion-a-year National Institute for Health Research network, and for our leadership in genomics and informatics, we can pull innovation through more quickly for patients, share a data package and be the first place on Earth that companies want to come to in order to have their innovations assessed.

The accelerated access review has been examining a whole range of complex issues in this field and its report is waiting for a post-referendum slot to be published. I can assure Members that in the time that the review team has been preparing that report for publication, I have not been sitting around waiting for it; along with NHS England, I have been doing the preparatory work to be ready for it. Without in any way wanting to pre-empt the report, let me just share with colleagues some thoughts about where I think there is a huge degree of consensus between the Department of Health and NHS England on how we might be able to make some moves.

There are three key areas. First, in specialist commissioning, which deals with many rare diseases and rare cancers, the drugs are commissioned nationally through the Department of Health and NHS England. We want to see whether we can pull together that commissioning function into a more innovative procurement unit, to pull through and do some more innovative deals with industry in return for discounts—acceleration for discounts.

Secondly, we want to consider the NICE pathways through to NHS England and ask whether we can make it easier for innovators either to go through a series of much clearer NICE pathways or to go straight to NHS England and do pricing, discounting, acceleration and volume deals, as well making sure that we have an transparency and accountability framework so that people can see which parties in the ecosystem are fulfilling their mandate.

[Mr Clive Betts in the Chair]

The evidence from recent NICE approvals is encouraging. Many thousands of people have benefited from blood cancer drugs that NICE has recommended, such as bortezomib, ofatumumab and rituximab, and the evidence is that if we gather the data properly from the drugs that we approve, then we can use that as an intelligent health service to inform which drugs we adopt and pull through more quickly. If we get that right, the CDF in its reformatted position as a managed-access fund operating earlier in the system could become a powerful vehicle for an accelerated-access model of cancer drugs assessment. That will require some careful work on the NICE/NHS England framework, but we are doing that work right now, as we speak.

I will close, Mr Walker, by saying that—ah, Mr Walker has been replaced by you, Mr Betts.

[Mr Clive Betts (in the Chair)]

Observant, Minister. [Laughter.]

[George Freeman]

That was achieved in an extraordinary manoeuvre, which was so seamless I did not even notice it happening over my left shoulder.

This summer, officials in the Department will work with the accelerated access review team and NHS England to try to strike a blow for an integrated healthcare innovation economy that makes best use of our budgets. Let me put it on the record that these are substantial budgets: we have committed an extra £10 billion a year to the NHS in 2020 and at the heart of that package is an extra commitment to new drugs worth £4 billion. Those are substantial sums, but we want to make sure that those funds are spent on getting the right drugs through to the right people quickly, and in return for that acceleration we will be able to get better discounts from the industry. I am confident that by bringing the CDF together with the accelerated access review, we will be able to deal with many of the issues that colleagues have raised this afternoon.

That brings me to the end of my comments. It only remains for me to thank hon. Members for raising these issues. I hope they can rest assured that I am committed to seeing these issues through and working with them in the days, weeks, months and—who knows?—years ahead.

[Mr Clive Betts (in the Chair)]

I call Jim Shannon. You have two minutes to wind up.

Data Security, Consent and Opt-out Reviews

George Freeman Excerpts

Wednesday 6th July 2016 Written Statements

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

Today, two independent reviews have been published which make recommendations about data security in the health and care system in England and a new consent and opt-out model for data sharing.

In September 2015, I commissioned the Care Quality Commission (CQC) to undertake a review of data security in the NHS and, in parallel, commissioned Dame Fiona Caldicott, the National Data Guardian for Health and Care (NDG), to undertake an independent review of data security and consent, with the purpose of:

Developing new data security standards;

Devising a method of testing compliance with the new standards; and

Proposing a new consent/opt-out model for data sharing in health and social care.

Both independent reviews have now completed, and the full reports are attached.

Healthcare, like all areas of modern life, is rapidly going digital. New technology and innovative approaches to the delivery of health and care have already driven significant progress, resulting in more people surviving the devastating effects of life-threatening and debilitating illnesses. If we are to deliver on our ambition to deliver the safest, most efficient healthcare possible for NHS patients, we must make the most of this digital information revolution, moving away from reliance on paper record keeping towards a 21st century, fully digital NHS, in which GP, pharmacy and hospital records, as well as diagnosis and condition monitoring are all based on digital platforms.

As the health and social care system becomes increasingly paperless and digital it also becomes ever more important that there are adequate and robust protections in place to protect the data and information held within it. All health and care organisations that handle sensitive information should be working towards giving patients the highest levels of trust and confidence and reducing the risk of external threats and potential breaches. It is vital that we do all that we can to ensure that health and care staff have access to the safeguards, knowledge and capability to handle such information securely.

The technological revolution in health and care has benefited individuals, their families, friends and the country at large. But it would not have happened without a significant change in the availability and quality of digital health and care data and greater innovation in how that information is used. To achieve our ambition of a fully digital NHS, it is vital that the public trust health and care staff to keep their personal data safe and secure.

Dame Fiona’s review found that, broadly, the public does trust the NHS with confidential data. However, we cannot be complacent. That is why we want to do more to realise the benefits that come from sharing information safely and consistently across the health and care system where there is a legitimate reason for doing so. For example, by giving patients more access to, and control over, the use of their personal confidential information, by improving the way that the NHS uses information to check the quality of care, or by researchers being able to use data to improve treatment and care.

Dame Fiona Caldicott has proposed 10 security standards to be applied in every health and care organisation that handles personal confidential information. These include measures which will protect systems against data breaches, ensuring that NHS leadership takes ownership and responsibility for data security and ensuring that organisations are as prepared as they can be to meet the challenges of the digital age. Dame Fiona has also emphasised the vital importance of data sharing and is proposing a new consent and opt-out model, which will give people a less complex choice about how their personal confidential information is used.

I am grateful to Dame Fiona and the CQC for their work on this important agenda. I am today publishing a consultation on two main aspects of Dame Fiona’s independent review, namely the new data security standards and proposed consent and opt-out model. It is vital that a full consultation and dialogue with the public and professionals takes place before any implementation of the recommendations can take place.

I am also publishing today the Government response to the consultation carried out late last year into the role of the National Data Guardian for Health and Care. The response sets out the Government’s key decisions in relation to the proposed functions for the role, and we remain committed to placing the role on a statutory footing at the next available opportunity.

In her review, Dame Fiona emphasises the importance of protecting anonymised data to give the public the assurances they need that they will not be re-identified. I can confirm today that the Government are supportive of the introduction of stronger criminal sanctions against those who use anonymised data to re-identify individuals.

On data security, both reviews highlight the importance of removing outdated IT systems. We are working with suppliers, including Microsoft, to help health and care organisations update their systems to make sure they are safe to use and store data. The Health and Social Care Information Centre will launch an initiative to support this work later this year.

The National Data Guardian review also recommends that the Government consider the future of the care-data programme, as the consent and opt-out model proposed by the review goes further than the approach that was planned for care-data and its pathfinder areas.

In light of Dame Fiona’s recommendations, NHS England has taken the decision to close the care-data programme. However, the Government and the health and care system remain absolutely committed to realising the benefits of sharing information, as an essential part of improving outcomes for patients. Therefore this work will now be overseen by the National Information Board, in close collaboration with the primary care community, in order to retain public confidence and to drive better care for patients.

It is also available online at: www.parliament.uk/writtenstatements.

[HCWS62]

Oral Answers to Questions

George Freeman Excerpts

Tuesday 5th July 2016 Commons Chamber

[David T. C. Davies (Monmouth) (Con)]

9. What the cost to the public purse was in 2015-16 of providing interpreters for people using the NHS who did not speak English.

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

Until now, data on NHS foreign language translation and interpretation have not been gathered centrally, but I am delighted to say that, as a result of the representations of my hon. Friend and other colleagues, we have changed that, and NHS England is now conducting a major piece of work looking at both commissioning and provider organisations’ expenditure as part of a procurement review. It is worth saying that in view of the importance of effective communication in good diagnosis, informed consent, safeguarding and public health, it is in all our interests that all our patients understand what the doctors and clinicians are saying to them.

[David T. C. Davies]

I am grateful for that answer, but may I respectfully suggest to the Minister that if we are to have a serious discussion about the costs and the impacts of large-scale migration into the UK on the NHS, we must have access to figures on this cost and we should not have to wait months and months to get them? The figures must be out there somewhere.

[George Freeman]

My hon. Friend will find no more passionate champion of good data in the NHS than myself. He makes an important point about getting on with this, and I have already signalled to the team in NHS England that we will need to get a grip on this quickly, not least so that the new Administration implementing the Brexit decision will know the figures and have them to hand.

[Philip Davies (Shipley) (Con)]

I made a recent freedom of information request to my local hospitals to find out the cost of interpreters. Airedale hospital reported that last year the cost was almost £200,000 and I suspect that, when I receive an answer, it will be even higher at Bradford royal infirmary. This money could be better spent on patient care. Surely it is better for these patients, if they want to contribute to the British way of life, to be able to speak English themselves. What is the Minister’s Department doing with other Government Departments to make sure that people who live in this country can speak English so that money for the NHS goes to the purposes for which it was intended?

[George Freeman]

Let me gently and respectfully point out that those who work in the NHS and the leaders responsible for it have made it very clear how dependent it is on people who come to work here in the NHS from overseas. Under the terms of our own mandate and indeed our own laws, the NHS has a duty to make sure that it provides proper diagnosis and treatment for all our citizens. For public health and safety, it is in nobody’s interests for citizens of the UK not to be able to integrate, deal with and get proper diagnosis from the system. My hon. Friend’s wider points about the speaking of English are well made, but they are not relevant to this particular question.

[Kelly Tolhurst (Rochester and Strood) (Con)]

11. What steps his Department plans to take to improve local dispensing arrangements.

--- Later in debate ---

[Karin Smyth (Bristol South) (Lab)]

14. What steps he is taking to ensure that forward budget planning in his Department is robust.

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

In the autumn statement and the Budget the Government fully funded NHS England’s five year forward view. We have committed to an extra £10 billion in-year by the end of this Parliament. Furthermore, we have frontloaded it, as we were asked to do by NHS England, with £6 billion extra by the end of 2016-17 with an extra £4 billion for technology funding.

[Karin Smyth]

I thank the Minister for his answer. Having published reports on seven areas of the Department’s work since January, members of the Public Accounts Committee, of whom I am one, were looking forward to the publication of the annual accounts with some anticipation. It is becoming clear that Brexit’s impact on staffing, procurement and medicines will be huge, so what is the Minister doing to assess and mitigate the risk to the 2016-17 budget and will this be made clear in this year’s published accounts?

[George Freeman]

May I first make it clear, as the Prime Minister has done, that nothing immediately changes? We are still full voting-right members of the European Union, and nobody in the system needs to worry about any immediate changes. The Government are putting together a plan for handling the negotiations that now need to be taken forward, and for my own part I as a Minister in the Department have convened a workforce to look at the issues around medicines access. There are three things we need to do: first, to reassure people that this country has a very strong life science and healthcare research system and economy; secondly, to make sure that we negotiate our new relationship with the EU in a way that works; and thirdly, to take advantage of the regulatory freedoms that we now have to make sure that this country is the very best country in the world in which to develop those innovations.

[Mr Speaker]

We are most grateful to the Minister for his thesis.

--- Later in debate ---

[Andrea Jenkyns (Morley and Outwood) (Con)]

T7. To expand on the question asked by the shadow Secretary of State, I too would like to raise the case of my constituent Abi Longfellow who suffers from dense deposit disease and is awaiting a decision by the NHS’s specialised commissioning body. She and her family have been subjected to frequent delays and miscommunications. I first met Health Ministers, NICE and NHS England a year ago to discuss Abi’s situation. What steps will the Government take to ensure that decisions on treatments such as this are taken in a timely fashion and that families are kept updated on the progress of those decisions?

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

My hon. Friend raises an important point. NHS England is currently unable to take final decisions on this year’s new treatments, including this particular drug, until the courts have decided whether pre-exposure prophylaxis HIV prevention should compete with other candidate drugs. She makes an important point about timeliness, and that is why I am leading an accelerated access review to speed up the way in which such decisions are taken.

[Martyn Day (Linlithgow and East Falkirk) (SNP)]

T4. In March, the Scottish Government made a commitment to substantially increase the financial support for the victims of contaminated blood. Initially, that will have to be administered through the current system, but the Department of Health appears to be dragging its feet. Will the Secretary of State explain the cause of the hold-up and say how he plans to expedite these payments to people with life-threatening illnesses?

--- Later in debate ---

[Margaret Greenwood (Wirral West) (Lab)]

T6. The cancer drugs fund is due to be handed back to NICE later this month. In May, 15 leading UK cancer charities published an open letter detailing their concern that that would see patients missing out on clinically proven cancer drugs because the NICE system is outdated and no longer fit for purpose. Will the Secretary of State agree to carry out a wide-ranging review of NICE’s health technology appraisal process for cancer drugs to ensure that all cancer patients can access the drugs they need?

[George Freeman]

I am delighted to assure the hon. Lady that as part of the accelerated access review, we are considering how we can ensure that the £1 billion commitment to the cancer drugs fund is used to accelerate through the most effective treatments, and, through the new system that NHS England is putting in place, to make sure that patients get access to better drugs more quickly.

[Mr David Davis (Haltemprice and Howden) (Con)]

T9. The Royal Free London NHS Foundation Trust recently signed an agreement to share 1.6 million patient records with Google’s DeepMind subsidiary. The data include medical history, HIV status, past drug overdoses, abortions, and all pathology, radiology and visit records. It is claimed that the data are anonymised, which is impossible given the nature of the data, and no permission was obtained from patients. It is also claimed that the agreement was made under the Secretary of State’s guidelines. Will he tell the House what he is doing to protect the privacy of such information?

[Nick Thomas-Symonds (Torfaen) (Lab)]

Happy 68th birthday to the NHS and thank you to its creator, Labour’s Aneurin Bevan.

According to research by the British Lung Foundation, the mortality rates for lung disease have not improved over the past 10 years. Will the Secretary of State take a lesson from the Welsh Government, which have put in place a specific strategy and delivery plan to tackle the issue?

[George Freeman]

The hon. Gentleman will know that the Under-Secretary of State for Health, my hon. Friend the Member for Battersea (Jane Ellison), opened an exhibition on this topic yesterday and that the Chancellor recently put an extra £5 million into mesothelioma research. Through the National Institute for Health Research, the Government are committing to invest in that disease area. We are also committed to ensuring that we drive up both research and better treatment for such diseases.

[Dr Sarah Wollaston (Totnes) (Con)]

Prevention of ill health has to be given a higher priority if the NHS is to meet the challenges set out in the five year forward view. Central to that will of course be the childhood obesity strategy. Has the Secretary of State had any discussions with the Prime Minister about the strategy’s future? Is he in a position to take over the strategy should No. 10 become distracted?

Land Registry

George Freeman Excerpts

Thursday 30th June 2016 Commons Chamber

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

I congratulate the Backbench Business Committee on picking this debate. I did not get here by rebelling against the Government often, but I am proud that one of my early rebellions was in support of that Committee. It has done us a service by bringing this debate to the House. Strong views have been expressed from all parties, except UKIP, which does not seem to have a view on this, and the Liberal Democrats. I also congratulate the right hon. Member for Tottenham (Mr Lammy) on securing the debate.

I want to say something about what the Land Registry does and why it is such an important office in this country, and to touch on why it is right that the Government review the basis for investment and leadership in different parts of the public sector. I will deal with several of the issues raised by hon. Members and confirm the Government’s position.

The Land Registry, as colleagues on both sides of the House have highlighted, underpins an important role of the state in keeping a safe, reliable and independent register of landownership. As every speaker has acknowledged, that goes right to the heart of our property-owning democracy. The rights of ownership of land and property and our ability as a society to enforce those rights were hard won, are much regarded around the world and are not taken for granted here. That is why the debate is important.

The Land Registry deals with more than £4 trillion of assets, with £1 trillion of mortgages depending on that clarity of ownership. Its 4,500 members of staff, to whom I pay tribute for carrying out an important function in our society, lead and manage the organisation. Accounts show that in the last year it generated £295 million of income, incurred slightly less in costs, and paid back to the Treasury a £14 million dividend—each year, it more or less turns over, washes its face and returns a small surplus operating profit. It is currently addressing issues of digitisation and efficiency, including through the much-commended map search and property alert products. It carries out a vital role at the heart of our system.

Colleagues, particularly on the Opposition Benches, have talked about privatisation, so it is worth reminding the House why successive Governments have embraced a bold programme of privatisation and the rationale for so doing. I stand as a proud member of a party that achieved much through that programme in previous decades. You do not need me to remind you, Mr Deputy Speaker, but privatisation was driven by the need to introduce competition and choice into key services on behalf of consumers, users and taxpayers; to draw additional investment into those services at time when Governments were not able to make that investment; to introduce new management into sectors of our economy that were failing, such as British Leyland and British Telecom; and to take off the Government balance sheet chronic liabilities that they were unable to meet and deal with.

That last point was one of the original rationales for the transfer of council houses from a state that was unable properly to maintain them to the citizens, who then showed how to maintain them and have been grateful to us ever since. People forget that a large amount of money was recycled back into the housing association revolution, which led a huge boom in public housing, albeit perhaps not a big enough boom. That reform was made to deal with a serious liability and to transfer a major asset—in that case, council housing—into the hands of the people who were paying for it through their taxes, and indeed to increase tax revenues for the Government. Many people—

[Alan Johnson]

Will the Minister give way?

[George Freeman]

I need to crack on—I am sorry.

Many people, probably including many Opposition Members, would admit that it would be strange to have a society—[Interruption.] Oh, I have lots to say. Very few Opposition Members would today be calling for the return of British Aerospace, British Telecom, British Gas, British Petroleum, British Leyland, British Steel and British Airways. We have achieved much in recent decades. I am merely reminding the House of the arguments for privatisation made at the time. We will come shortly to decide whether they are appropriate in relation to the Land Registry.

[Alan Johnson]

I am grateful to the Minister for his fascinating history of privatisation. Can he explain why, when the rabid privatisers in the Conservative party were privatising all those things, they did not go anywhere near the Land Registry?

[George Freeman]

The right hon. Gentleman makes an interesting point. I was just setting out the reasons for dealing with sectors such as aerospace, telecoms, gas and other utilities, and British Leyland. Does anyone seriously think we should still have a car industry in the hands of the management of British Leyland? I doubt it. I merely remind the House that the reasons for those privatisations were to do with competition and choice, investment, management and the reduction of liabilities on the public balance sheet.

What would be the rationale were the Government to take privatisation of the Land Registry forward? Well, I can confirm that the Government have absolutely no plans for this. We have carried out the consultation and we are in the process of hearing, loud and clear, what is said. For those watching from the Gallery and wondering why it is even being considered, the rationale would be to create a basis on which the Land Registry, if it needed it, could raise substantial extra investment that the Government could not provide. It could be a mechanism to get a substantial injection of new leadership, to help the Land Registry to deal with the opportunities of globalisation—around the world, newly liberated and fast-growing economies and societies are looking to copy the UK model in many respects, and this might be one of them. And yes, it could be a mechanism to help us to tackle a still ongoing and chronic debt and deficit crisis, which has saddled the next generation of this country with debts. The Government look all the time at the public balance sheet, so those are the reasons why an institution such as the Land Registry might be worth considering.

[Bill Esterson]

The Minister is giving reasons why the Government might look at something. If the Government do not have a view, why was the consultation framed as it was—in terms of how to privatise, not whether to privatise? Does that not suggest a fundamental commitment to the privatisation?

[George Freeman]

I suggest that the best indication of our commitment is what I am saying at the Dispatch Box right now. I will comment in a moment on events going on outside this Chamber, which will determine how this is ultimately taken forward.

I was making the point that the Government have carried out a consultation. It is right that, as a responsible Government, we keep under review whether and how functions that are currently the monopoly responsibility of the state can be better financed and thrive more with new freedoms, and by so doing put the public finances on a stronger footing. I merely set out the rationale on which such matters have been addressed in the past and confirm once again that the Government have no plans. This is merely a consultation. We have received no bids; no decision has been made.

[Mr Lammy]

When the Minister says the Government have no plans, is he in fact pronouncing on the consultation? He has heard the House this afternoon: no one has risen to speak in favour of privatisation. Obviously, one is reflecting carefully on whether to test the strength of feeling by putting the matter to a vote. It is important to understand what the Minister is saying, because the real concern is that this is a Treasury-driven proposal—that was one of the reasons he gave. If that is the case, it probably is right that the House of Commons demonstrates to the Treasury that it probably would not get the privatisation through.

[George Freeman]

The right hon. Gentleman is a canny parliamentary operator. Let me continue my speech and deal with the various points that have been raised, because in so doing I may be able to reassure him that this Business Minister is listening and has heard what has been said loud and clear.

[Christian Matheson]

I am a little confused. If the Government have no plans to privatise the Land Registry, why hold the consultation in the first place?

[George Freeman]

I am glad the hon. Gentleman asks that. Let me explain.

It may have escaped the hon. Gentleman’s notice for the purposes of this debate that the present Government and our predecessors, the coalition Government, have had to confront a very serious crisis in our public finances on behalf of us all, but on behalf in particular of the young of this country, whose debts these are not and who did not make the decisions and are not responsible for incurring them, but who have entered a society and an economy mired in debt. That creates a situation that any responsible Government have to deal with. If the Opposition want to form an alternative Government, they will have to deal with this question, which sits at the heart of the reality confronting any serious candidate for Government. As a Business Minister in the present Government, I would not be doing my job properly if, with my colleagues, I did not keep under review the functions that we currently carry out within Government and ask whether there is a way to put them on a footing where they can raise the investment they need off the public balance sheet and attract stronger and better management—Whitehall is not always the best place to manage every function in the state. We have to be creative about how to generate more revenue, so that we can support higher quality services for UK customers, citizens and taxpayers. I do not think a modern Government would be doing their job if they did not ask those questions.

A Government also have to consider the points made by parliamentarians and take into account the issues that might arise from such a move in terms of the delivery of the service. That is what the Department is doing right now. We are considering the responses to the consultation and the submissions made today in this debate, which is why I thank the right hon. Member for Tottenham for securing it. Let me reply now to the points raised.

The right hon. Gentleman spoke about the public concern and questioned the motive for having the consultation. I hope I have dealt with that: there is no illegitimate motive. It is appropriate for a Government to ask the question. He made a really important point, which others have echoed, about transparency. The register sits at the heart of our democracy because it is a register of land ownership. It is important that it is transparent and interrogatable and that people can see that it is.

The right hon. Gentleman raised the need to ensure that the operating surplus is reinvested and to allow the organisation to grow and develop. The right hon. Member for Kingston upon Hull West and Hessle (Alan Johnson), who was very amusing in his summary of the quinquennial reviews that plague all Governments, asked the important question: what is the compelling case for this? I have tried to set out the bones of what a case might be; whether it is compelling or not, it is required to be considered alongside the other points that are being made.

My hon. Friend the Member for Harwich and North Essex (Mr Jenkin) made an interesting speech. As he pointed out, he is someone who one would normally expect to be on the barricades for more privatisation. Indeed, he was a great champion of it in decades past. He made the point that this is critical infrastructure and goes right to the heart of our ability as a society and a political economy to keep track of our land rights.

Issues were raised about integrity, stability and the importance of open data and transparency. I am the Minister who, with other responsibilities, is in charge of ensuring that the country is able to use our health data to modernise the NHS, to attract the investment we need in new medicines, and to make the NHS and the UK world leaders in developing new medicines. We are absolutely clear that, in doing that, one of the things that we will not do is sell any state or private data. We are building databases on which industry can work with us to interrogate the conditions for new diseases, but we are seeking to take royalties and rights from commercialisation to put that money back into providing additional services. However, we are absolutely clear that it is a reference library, not a lending library. That principle of not selling core data is important. We want data to be open and used to support innovation and greater research. I know that my hon. Friend cannot be here for my speech; he did give me his apologies—he had to be somewhere else.

My hon. Friend the Member for Carlisle (John Stevenson), a solicitor himself, who has used the Land Registry and indeed relied on it, was pretty powerful when he referred to this as a privatisation too far. My hon. Friend the Member for Colchester (Will Quince), who has been a property lawyer—once a property lawyer, always a property lawyer—made a similar point and echoed the concerns, referring to this as potentially anti-competitive and said that he would have concerns on those grounds.

My hon. Friend the Member for South Dorset (Richard Drax) raised a chuckle or two when he referred to his belief that every Englishman’s home is his castle. He referred to this as quasi-judicial, which may be a reference to the name of the new Lord Chancellor in the next Administration, but he talked powerfully about the Government having bigger fish to fry. He is right that any Government formed to deal with the scale of the ongoing crisis, which is affecting this economy and others across western Europe, with ageing societies, the need to reform and update our public services, and to get rid of deficits and to pay off the debt, will face substantial issues, and this is one small part of looking at how we can refresh and modernise our approach to 21st century Government.

My hon. Friend the Member for Thirsk and Malton (Kevin Hollinrake) made a powerful point about this debate being something of a symptom or an emblem of a new politics and mentioned our late, much lamented and respected colleague Jo Cox, whom I suspect would have spoken in the debate with her much respected blend of passion and local responsibility. She would have spoken for her constituents. My hon. Friend made the point that if any reforms were to be put in place, it would be important not to make the mistake of creating a private sector monopoly. That is partly why I repeated the rationales for those early privatisations. They were never about creating private monopolies; they were about choice and competition where those would be advantageous for the consumers and users of the service. My hon. Friend the Member for Telford (Lucy Allan) powerfully endorsed those points.

I am conscious that the House’s time is precious. Although I would love to stand at the Dispatch Box all afternoon and talk about how we might embrace more interesting, bolder and innovative models for delivering private and public sector innovation, I am conscious that colleagues are distracted by events beyond this Chamber. [Interruption.] I assure Members that whoever it is, is not behind me, in more ways than one.

I confirm that the Government have merely consulted in the last few weeks and months on this question; for the avoidance of any doubt, I also confirm that no decision has been taken and that Ministers are listening carefully to the views that have been expressed. As a Government we have a serious responsibility to ensure that we constantly keep under review the arrangements we have in place for the delivery of services such as these.

As my hon. Friend the Member for Colchester said, we were elected on a mandate to balance the books. That requires some careful judgments about the timing and the way in which we do it. My ministerial portfolio is all about driving a different model of innovation between private and public, working together and ending the apartheid of private productive and public not; I do not think that that is appropriate or sensible for 21st Government. We need to find ways of working together. It is right that we constantly look at these issues. Colleagues have touched on a range of different models. Were one to look at taking forward a way to put the Land Registry on a footing that allows it to invest faster, to develop new services and new leadership and to tap into global markets, one could consider a range of models, including mutualisation and the new structures that are being developed.

We have heard the concerns expressed in the House loud and clear. Others elsewhere, in those other rooms I referred to, will determine in due course what the Government will decide to do in this case later in the year. I am aware, as all of us painfully are on the Government Benches, that the majority is 12. It does not require many people to take a different view from the Government of the day in order for us to assess the likelihood of getting a measure through. I have no idea what those currently looking to form the new Administration will want to do when they are in office, but anyone listening to the debate will have heard loud and clear the view of those who have spoken on both sides of the House. If anything is to be done to look at the future of the Land Registry, it will need to be clearly focused on solving particular problems that exist today and dealing with specific issues that need to be addressed. I think it was one of the Members on the Opposition Benches who said, “If it ain’t broke, don’t fix it.” The right hon. Member for Kingston upon Hull West and Hessle called for clarity on what the case would be. I hear him loud and clear. We would need to set out clearly the problem that we were trying to solve to take the matter forward.

I hope that I have addressed the points that have been raised. I again thank the right hon. Member for Tottenham for securing the debate.

Stillbirth

George Freeman Excerpts

Thursday 9th June 2016 Westminster Hall

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

I congratulate the hon. Member for North Ayrshire and Arran (Patricia Gibson) on securing this debate and on sharing her experiences so personally and powerfully with the House. I thank colleagues from all sides of the House for doing likewise. Sometimes this House, when it speaks with a personal voice on non-partisan issues, can strike a blow for democracy. I think anyone listening today will have seen their representatives doing their jobs and sharing here in Parliament that which is so often not well expressed in the land.

It is a great pleasure for me to stand in for the Minister for Care Quality, the Under-Secretary of State for Health, my hon. Friend the Member for Ipswich (Ben Gummer). He is unable to be here today, ironically because his wife, who is pregnant, is having a check-up. I hope it will not be anything serious, and I am sure we all wish him well. I know how much he wanted to be here today, and a number of Members on all sides have paid tribute to his leadership and commitment to this issue, which is very personal. I know he would like to be nowhere more than here, other than beside his wife.

Being here is a particular pleasure for me, partly because I am the Minister responsible for research in the NHS, genetics and unleashing the power of our health system to use its daily footprint of treatment and diagnoses to help to prevent suffering for future generations. This is an area in which, as hon. Members have touched on, good research and intelligent use of data from our health system can help to support future care and improve standards of care and prevention.

On a personal note, I was a child of parents who lost a child. I was due to have a baby sister. She was stillborn very late, and it was a tragedy for the whole family, as hon. Members have talked about, and devastating for my mother. It created huge pressure on my mother and her then husband’s marriage, which did not survive, and led to a complex raft of mental health and domestic family issues, which, as a number of colleagues have said, is all too common. People suffer in silence, and I think all of us talking about this today will in itself help to give people courage to recognise that this is an important issue that people should feel free and able to talk about.

Before I address the specific points made by the hon. Member for North Ayrshire and Arran and other colleagues, I want to set the scene on the Government’s approach to stillbirths in England. I and the Minister for Care Quality, and the Department of Health and its officials, very much welcome the hon. Lady raising these issues today and her support for Sands awareness month, which is this month.

As a number of colleagues have mentioned, stillbirth is often a taboo subject that many people find difficult to talk about and, because of that, many people do not know the statistics. Stillbirth is a personal tragedy, but the statistics matter. Around 15 babies every day are stillborn or die in the first weeks after birth. Today, perhaps 15 families who are expecting a joyous life event will instead experience one of the biggest tragedies of their lives, with another 15 tomorrow and another 15 the day after, and so on. If there were 15 fatal car crashes every day, I dare say the country would be in uproar, but stillbirths remain an uncomfortable subject for people to discuss. It is important that here in Parliament we raise the issue and raise awareness of it.

I want to commend the all-party parliamentary group on baby loss, which is co-chaired by my hon. Friends the Members for Eddisbury (Antoinette Sandbach) and for Colchester (Will Quince). The APPG was established following one of the most moving Adjournment debates held in Parliament, last November, on bereavement support for families who have experienced the loss of a baby. Reducing the number of stillbirths is an absolute priority for the Department of Health, and we will continue to work closely with Sands and the health system to raise awareness of the risk factors and the clinical practices that can improve outcomes for families.

In fact, England is a very safe country in which to have a baby and it is encouraging that the stillbirth rate in England has fallen from 5.2 deaths per 1,000 births in 2011, to 4.7 in 2013; but we all know that there is much more work to be done. Compared with other similar countries, our stillbirth rates are frankly unacceptable. The Lancet stillbirth series was published in January and showed that the UK was ranked 24th out of 49 high-income countries. The same publication showed that the UK’s rate of progress in reducing stillbirths has been slower than that of most other high-income countries. The annual rate of stillbirth reduction in the UK was 1.4%, compared with 6.8% in the Netherlands. To be frank, that places us in the bottom third of the table—in 114th place out of 164 countries around the world—for progress on stillbirths.

We are aware, however, of the impressive work being done through the Scottish Maternity and Children Quality Improvement Collaborative that has resulted in a 15% decrease in the stillbirth rate in Scotland in just three years. That is another area where the devolution of responsibility allows healthy competition between the devolved Administrations and the best can inspire the rest. We want NHS maternity services to be an exemplar of the results that we can achieve when we focus on improving safety and the patient experience. We believe that, with a concerted effort, we can make England one of the safest places in the world to have a baby.

The Government are wholeheartedly committed to improving outcomes for mothers and babies. In November last year, the Secretary of State launched the national ambition to reduce the rate of stillbirths, neonatal deaths, maternal deaths and brain injuries that occur during or soon after birth by 50% by 2030, with the short-term aim of achieving a 20% reduction during this Parliament by 2020. We were delighted that the royal colleges and maternity and neonatal professionals, as well as key third sector organisations, including Sands, have come together in this area and have welcomed that important yet stretching ambition; we know that to achieve it the health system, the Government, charities and the public all have to take action and work collaboratively.

We know from experience in some maternity services in England that making safety a priority can have an impact very quickly. Strong leadership in the service, good communication, implementation of evidence-based practices, learning from other services about what works and what does not, multidisciplinary team working and training can all have a real impact quickly.

To support the NHS in achieving that stretching ambition, the Government have also announced additional investment: £2.24 million to support trusts in buying monitoring and training equipment to improve safety. That fund was run at the beginning of this year and has now been completed. Over 90 trusts have been successful and received a share of funding, allowing them to buy the latest equipment. We are also putting £1 million into rolling out training programmes to ensure that staff have the skills and confidence they need to deliver world-leading standards of care.

We have also committed to fund the development of a new system—the standardised perinatal mortality review tool. Once that is complete it will be used consistently across the NHS to enable staff to review and learn from every stillbirth and neonatal death. We are developing the tool as many national reports have referenced—as colleagues have here this afternoon—the fact that the same mistakes are being made repeatedly, which is unacceptable. What is missing in these cases is a systematic approach to improving services. We must view individual failings as important and recognise the need for accountability, while balancing that with the need to establish standard processes that will prevent mistakes and avoidable incidents from reoccurring.

In November we also committed to work with Sign up to Safety—the national patient safety campaign launched by the Government in 2014—to support all organisations and to ensure that they can contribute to the national ambition and share best practice. In March we launched the Sign up to Safety sub-brand, “Spotlight on Maternity”. The new guidance asked all organisations with maternity services to commit publicly to placing a spotlight on maternity, to contribute towards achieving the Government’s national ambition and to improve maternity outcomes. It set out five high-level themes for services to focus on that are known to make care safer: building stronger leadership; building capacity and skills for all staff; sharing progress and lessons learned across the system; crucially, improving data capture and knowledge; and focusing on perinatal mental illness.

I want to deal, in particular, with a number of points that have been raised, starting with the investigation of stillbirths and neonatal deaths. The hon. Member for North Ayrshire and Arran raised two points about the investigation of stillbirths. The first was the suggestion that coroners’ powers should be looked at and could be expanded, so that they have jurisdiction to investigate the death of a child who is stillborn after 37 weeks’ gestation to try to understand why the death occurred and to inform best practice. The second point was about independent investigations about clinical care when concerns are raised about a stillbirth or neonatal death.

By law, coroners can only investigate the death of a child when the child has lived independently of their mother, and there are no current plans for the Ministry of Justice to change that. The points about the importance of parents being able to volunteer to have a coroner look at such cases have been well made this afternoon, and I am sure that Ministers at the Ministry of Justice will be watching this debate. If there is doubt as to whether a death was a stillbirth, it should be reported to the coroner to consider whether an investigation should be carried out. Expanding the remit of coroners would require a change in the law and would be an issue for the Ministry of Justice—I will make sure that this debate is brought to its attention.

The Royal College of Obstetricians and Gynaecologists’ guidelines on late intrauterine foetal death and stillbirth state that the right approach is for stillbirths to be reviewed in a multi-professional meeting, using a standardised approach to analysis for substandard care and future prevention. We believe that we should be pursuing that focus, led by clinicians. We are looking at all options to improve reviews into stillbirths and neonatal deaths, including investing half a million pounds to create a system to look at them more consistently across the country, so that staff can understand and learn from each incident.

In April we established a new independent healthcare safety investigation branch—HSIB—to carry out investigations and share its findings. It will operate independently of Government and the healthcare system, be transparent and support continuous improvement by using the very best investigative techniques from around the world, as well as fostering learning from staff, patients and stakeholders. We want that branch to act—in the same way as in the airline industry—as an exemplar to the system as a whole, so that investigations improve and clinicians are increasingly confident that when they speak up after a mistake the result will be learning and not blame.

I want to tackle the point the hon. Member for North Ayrshire and Arran made about collaborative care between clinicians—midwives and doctors—and mothers. She called for maternity care that is more collaborative and responsive to women. She is right. She mentioned the statistic from Sands that 45% of women who raised a concern with a health professional during pregnancy were not listened to and then went on to have a stillbirth. That is completely unacceptable. All women should receive safe, personalised maternity care that is responsive to their individual needs and choices. That is why the Minister for Care Quality has taken such a strong lead on this issue.

In February the report of the independent National Maternity Review chaired by Baroness Cumberlege, “Better Births”, was published. It set out the vision for maternity services across England to become safer, more personalised, kinder, professional and more family-friendly. As we work towards achieving the national ambition, the Department will continue to work closely with NHS England to ensure that this work is embedded in the maternity transformation programme that is delivering the “Better Births” programme.

Women and their partners and families also have a role to play. Evidence shows that this stretching ambition cannot be achieved just through improvements to NHS maternity services. The public health contribution will be crucial. In fact, The Lancet stillbirth series concluded that 90% of stillbirths in high-income countries occur antenatally and not during labour.

When starting pregnancy, not all women will have the same risk of something going wrong and women’s health before and during pregnancy is one of the factors that most influence rates of stillbirth, neonatal death and maternal death. We know that a body mass index of over 40 doubles the risk of stillbirth. A quarter of stillbirths are associated with smoking, and alcohol consumption is associated with an estimated 40%. In addition, the report, “Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries in the UK” published in June 2015 showed that the risk for women living in poverty is 57% higher, for babies from black and minority ethnic groups it is 50% higher and for teenage mothers and mothers over 40 it is 39% higher. Those striking statistics show why the Department of Health will continue to work closely with Public Health England and voluntary sector organisations to help women to have a healthy pregnancy and families to have the best start in life wherever they are and whoever they are.

As part of the national ambition, the Department is already developing a public-facing communications campaign with Sands and Best Beginnings to highlight the avoidable risk factors. It is vital that women and their families understand these risks and the impact they can have on outcomes for them and their babies, and the lifestyle changes they can make to increase their likelihood of a positive outcome. This campaign will be launched imminently and I encourage all hon. Members to support it during the launch period.

I want to touch on research as the Minister for research in the Department. Some hon. Members have asked that we support research into the causes of stillbirth and neonatal death so we can better understand how to identify babies at risk. Unless we invest in research, we simply cannot understand how to improve services. I welcome the fact that just this week Sands announced the launch of its 2016 research fund. In recent years, the Government have invested significant sums in support of research into important questions regarding stillbirths and neonatal deaths.

The National Institute for Health Research, for which I am responsible and on which we spend over £1 billion a year as the NHS research laboratory around the country, supports biomedical research centres at Cambridge and Imperial College, where it has invested over £6 million in research on women’s health, including research to increase understanding of stillbirths and neonatal deaths. Other NIHR funding pots are available for bids from researchers and charities. It is vital that we continue to encourage bids for studies on the causes of stillbirth and neonatal deaths and the identification of babies at risk, so we can learn how to improve services.

I want to touch on the importance of bereavement care, which has been raised. The death of a baby, whether during pregnancy or following birth, is a trauma and a tragedy for those involved. I can only begin to appreciate just how devastating it must be for the parents who experience that loss. It is important that we provide them with appropriate care and support at that time. It is our duty to them. The recent MBRRACE report stated that 60% of parents currently receive a high standard of bereavement care, but that means that 40% do not.

Since 2010, we have already invested £35 million in the NHS to improve birthing environments, including better bereavement rooms and quiet area spaces at nearly 40 hospitals. We have also conducted a survey to map the bereavement provision in England, which will allow us to build up a picture of current provision and identify where the gaps are. The qualitative data we have collected is also crucial in both highlighting areas of good practice and understanding the challenges that services face. My officials are considering all that information and working on setting out the next steps imminently.

In the time available, I want to try to deal with the other points that have been raised, including third trimester scans. The UK National Screening Committee is currently carrying out a call for new screening proposals. I can send hon. Members details of how to submit a proposal to that funding pot.

On routine antenatal care, the “Better Births” report by the National Maternity Review calls for safer care based on a relationship of mutual trust and respect in line with the woman’s decisions. The vision is for women from the antenatal period to receive care from a small team of midwives who work closely with an identified obstetrician. The relationship developed between the woman and the clinicians needs to ensure that the woman receives personalised and safe care that is responsive to their individual needs.

My hon. Friend the Member for Henley (John Howell) asked about ensuring that clinical commissioning groups are properly aware of their obligations. The “Saving Babies’ Lives” care bundle published in late March by NHS England brings together elements of maternity care that are recognised as evidence-based and/or essential for best practice. It is designed to tackle stillbirth and early neonatal death, and focuses on those four key areas. I am happy to take this opportunity to highlight the fact that CCGs should be aware of it and to make sure that NHS England ensures that CCGs are aware of their responsibilities and what is expected of them.

The hon. Member for Ellesmere Port and Neston (Justin Madders) asked about our commitment to report on the progress of our ambition of a 20% reduction by 2020. I am delighted to confirm that the standardised perinatal mortality review tool will be available to all trusts by 2017 and we will provide annual progress reports following the launch of the strategy. The annual progress report will include expert advice from all the royal colleges and we plan to publish the first this autumn.

Some hon. Members asked about counselling for families. We are committed and believe that good bereavement care should consider the needs of the whole family: mother, father and children. The Government are absolutely committed to improving bereavement care. We are working actively on setting out the next steps in due course.

In conclusion, I thank the hon. Member for North Ayrshire and Arran for securing the debate and hon. Members from all sides for sharing often personal and traumatic stories. It has allowed us to highlight some very difficult issues and to acknowledge the silent suffering of so many of our constituents—this condition does not respect party or geographical boundaries—and to stress the importance of tangible progress from all the agencies involved. I hope that I have reassured hon. Members that the Government are taking the matter seriously. We are putting in both investment and, importantly, leadership, which I think all hon. Members agree the Minister for Care Quality is showing. I look forward to seeing the progress of all this work and reporting on it later this year.

Comparative Healthcare Economics/NHS Finance

George Freeman Excerpts

Tuesday 7th June 2016 Commons Chamber

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

I thank my hon. Friend the Member for South West Wiltshire (Dr Murrison)—my honourable and clinical friend—for bringing this debate to the House. I am only sorry that there are not many more people here this evening, because this subject goes to the heart of the prosperity, sustainability, health, wealth and resilience of our economy and society in the 21st century. I am very grateful that he has raised it.

This subject raises, and my hon. Friend has raised, a number of important issues. I start by pointing out that our ability to fund the NHS is profoundly based on our ability to run a strong economy. Without getting distracted into discussing the merits of the case for Brexit, I would just say that it is very difficult to find any serious commentator who thinks that leaving the European single market would be good for our economic growth prospects. It would therefore have a direct impact on our ability to fund the NHS.

My hon. Friend made a number of important points. He rightly flagged up the importance of outcomes not inputs, and said that we should be driven not by inputs, but by outputs. He spoke of a better use of existing budgets, as well as the need for new money. He mentioned the importance of new care pathways that are changing the way we diagnose and treat disease, and indeed prevent disease in the first place. He also spoke of the importance of technology and productivity in allowing us to get more health for every pound that we spend. The mission that I am delighted to say sits at the heart of the new portfolio that I hold as the first Minister for Life Sciences is to accelerate the uptake of innovation in our healthcare system to help us deliver more health for every pound, and to generate more pounds from our life sciences and health technology sector to help pay for our growing health costs as a society.

My hon. Friend touched on the fact that we have always had a mixed healthcare economy in this country—a mixture of public funding, charitable funding and some private funding. That mixed economy is mirrored across Europe, with different countries having different balances. He raised the equally important issue of health and care integration, and how as an ageing society we can tackle that challenge.

In the short time available, I want to say something about international health comparisons, which my hon. Friend raised, health outcomes and what the Government are doing. He mentioned the 2010 Government White Paper, “Equity and excellence: Liberating the NHS”, in which it was acknowledged that more needed to be done to improve health outcomes in comparison to other countries. It stated:

“Compared to other countries…the NHS has achieved relatively poor outcomes in some areas. For example, rates of mortality amenable to healthcare, rates of mortality from some respiratory diseases and some cancers, and some measures of stroke have been amongst the worst in the developed world.”

I do not shy away from that. We are in the process, with NHS England, of gripping those issues.

It is true that the NHS has, at times, scored relatively poorly on being responsive to particular patient groups. We have had problems with MRSA that were worse than the European average. There is some international evidence that shows that we have much further to go on managing care more thoroughly. For example, the NHS has had high rates of acute complications of diabetes and avoidable asthma admissions.

I do not for a minute come here tonight to pretend that everything is perfect. But the truth is that it is difficult to compare like for like, as all healthcare systems are different and there are many ways to compare them. For example, the OECD’s latest report on amenable mortality rates shows that the UK has average rates of amenable mortality in the OECD, and is not among the worst in the developed world, as has been suggested at times. The NHS has been ranked first overall in the Commonwealth Fund report. I accept my hon. Friend’s point about the report only measuring certain factors, but on quality, access and efficiency the NHS was ranked the No. 1 system in the world—I do not deny that scope for improvement was flagged in outcomes and healthy lives.

On the latest OECD data, for 2013, it is true that total health spending in the UK, inclusive of public and private spend, at 8.5% of GDP is lower than the EU15 average of 9.5% of GDP, but it is around the same as the OECD average of 8.9%, and the UK delivers above average health outcomes for an average level of expenditure within the OECD. The majority of UK health funding is through general taxation. Reviews of the evidence have shown that using general taxation as the main mechanism for healthcare funding is still fairest and most efficient. That raises the long-term point that my hon. Friend is flagging, which is that we need to think about how we want to fund the levels of healthcare that our ageing society is likely to need.

The OECD has said that no broad type of healthcare system performs systematically better than another in improving a population’s health status in a cost-effective manner. In his 2002 review, Derek Wanless concluded, interestingly:

“Private funding mechanisms tend to be inequitable, regressive (those with greater health needs pay the most), have weak incentives for cost control, high administration costs and can deter appropriate use.”

For that reason and many others this Government are absolutely committed to funding the NHS through the existing mechanism to the highest level we can afford as a society.

On health outcomes, I want to flag in particular the point my hon. Friend made about cancer. Cancer survival rates are at a record high and continue to improve, as shown by the latest figures from the Office for National Statistics in February this year. We know that we have to continue to do better. Every other country is improving, and technology is changing; that is why the independent cancer taskforce report, “Achieving World-Class Cancer Outcomes. A Strategy for England 2015-2020”—published to wide acclaim in July 2015—has pulled together a consensus from the whole cancer community. That strategy sets out a number of important measures that we are committed to and are seeing through: a radical upgrade in prevention and public health; a national ambition to achieve much earlier diagnosis; establishing patient experience on a par with clinical effectiveness and safety; and transforming the way we support people living with and beyond cancer, as there are now 850,000 people living with cancer.

New drugs on the horizon offer the prospect of actually curing cancer in some patients. That is an extraordinary breakthrough, and we are making the necessary investments to embrace genomic personalised cancer services in the NHS and ensure that commissioning, provision and accountability processes are brought up to date and are more fit for purpose. At the heart of all that is the need to adapt to the new drugs coming through, which is why I have launched the accelerated access review to look at the way in which we assess, adopt and reimburse new medicines, and unleash the power of our NHS to provide data and genomic insights to drive the increasingly personalised and precision medicines that the cancer community is producing.

I do not want to pretend that the issues my hon. Friend has raised are not real. They are real, for a number of reasons, not least our rising population. By 2030, England’s population is forecast to reach 60.2 million, a rise of more than 6 million from 2015. Over the same period, the number of people aged 85 and over is expected to grow by more than 74%, an increase of 1 million from 1.3 million to 2.3 million. That puts huge pressure on our system of both health and care, and speaks to the importance of integration. That is why we have supported NHS England’s own five year forward view—its own action plan; I am sure that, like me, he welcomes the fact that as a result of our reforms NHS England’s clinical and professional leaders are now able to set out their requests for how they want to manage the system, and we fund them and hold them to account in doing that. It has put in place a number of important mechanisms to change the models of care and to update how the system treats those key chronic diseases. If those services continue to be provided under the old model of 1947—silo care—they will put unsustainable pressure on our system.

NHS England is putting in place a range of measures, including the new care model vanguard sites—there are 50 of them around the country—and the Carter report on procurement. We are improving clinical commissioning group performance through the Right Care programme. We are putting in substantial extra money, including £2.1 billion in the sustainability and transformation fund, £4 billion for technology and the digitisation of the NHS, and billions for new drugs.

Crucially, we need to upgrade how the system diagnoses and treats so that we can liberate people from the 20th-century model of heavy dependence on the state system to provide healthcare at its convenience, where people queue to receive healthcare. We want to move to a system in which people can live with and manage diseases better from home and be productive citizens in the economy and society. A huge amount of work is happening on new care pathways.

Integration was at the heart of my hon. Friend’s speech. We need to develop a health and care system in which we recognise that, particularly for the elderly, health and care need to be seamless. In our system today, they are not. That is why we have set up the better care fund, and given local authorities the freedom to raise extra money through the local care precept, which will in itself put £3.5 billion extra into supporting care, including £500 million for disabilities facilities, which will prevent 8,500 people from needing to go into care homes.

We are putting the money in to try to support local health and care integration, but we want to go further and faster, which we must do as a society and economy. We do not want to impose top-down solutions; we want to create situations in which local health economies can adopt the right mechanisms and the right processes for them.

In this Parliament, we have responded to NHS England’s leadership’s requests. It set out clearly before the election its five year forward view and forecast that, by 2020, we would be looking at £30 billion of extra health costs, of which it said £22 billion would be avoidable with technology, transformation, better care models, digitisation, smarter and remote diagnostics, and more people being empowered and enabled so that they would not have to present at GP surgeries and hospitals so often. We have backed that plan. It asked for £8 billion a year, but by 2020 we will give it £10 billion. We have front-loaded that with £3.8 billion in 2016-17, the £3.5 billion for social care and the £4 billion for technology. Nobody can say that the Government have not put their money where the NHS’s mouth is. The NHS said that that is what it needed, and we have provided it.

In giving succour to the idea of a royal commission, I would not want to undermine that very important settlement, but I recognise that the points my hon. Friend has raised go to the heart of the big health and care debate we need to have as a society. The Government do not believe that a royal commission is the right solution, but I support the debate and want more of us to have it locally.

In the end, all hon. Members know that it is in their local health economies that the leaders who can crack this problem for us exist. We need to incentivise them. That is why the devolution plans and the integration of devolved budgets, and the measures we are considering to incentivise local health economies—we want not to reward them through tariffs for the treatment of disease, but to reward them for the prevention of disease—are so exciting. Ultimately, they provide the basis for optimism in the long term. We need to get more out of the money we spend as well as raise more money as a society. I am grateful to my hon. Friend for raising this important issue.

Question put and agreed to.

Oral Answers to Questions

George Freeman Excerpts

Tuesday 10th May 2016 Commons Chamber

[Dr Tania Mathias (Twickenham) (Con)]

3. What steps he is taking to encourage the use of biosimilar medicines in NHS treatment.

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

The biosimilars—the generic versions of biologic products—represent part of the extraordinary range of new drugs that are becoming available for the benefit of our patients. The Government are committed to ensuring access to drugs for UK patients at the highest level of quality and safety, and to ensuring that effective biosimilar medicines are available. That is why we are leading, not just here but in Europe, the regulatory regime through the Medicines and Healthcare Products Regulatory Agency as the lead assessor and rapporteur. In the NHS, the chief pharmaceutical officer, Keith Ridge, and the commercial medicines unit in my directorate have put together a framework agreement for biosimilars, and through the medicines optimisation programme we are looking specifically at biosimilars, and we have set up a national biosimilars medicines group.

[Dr Mathias]

I thank my hon. Friend for that answer. May I ask also that where NHS pharmacists are involved in oncology clinics, there is a higher prescribing of biosimilars? What steps are in place to encourage more oncology clinics to involve NHS pharmacists at the start of the patient’s treatment journey?

[George Freeman]

Not surprisingly, my hon. and, in this field, learned Friend makes a very important point. We have set up a number of initiatives to that very end: to make sure that our pharmacologists and pharmacists in the system are alert and have all the information they need to increase the prescription of biologics and the generic versions, biosimilars. I will happily write to her, describing a range of initiatives that are in place which we are pursuing to that end.

[Kit Malthouse (North West Hampshire) (Con)]

One of the issues around the adoption of biosimilars and, indeed, driving down the NHS drugs budget generally is the lack of local analysis of patterns of prescribing against efficacy and cost. I wonder whether the Minister would consider encouraging clinical commissioning groups to appoint analytical pharmacists, who could look at this equation and recommend different prescribing decisions on a local basis.

[George Freeman]

My hon. Friend makes a really interesting point. It goes to the heart of the work that we are doing at the moment with CCGs, in terms of use of data to map and track prescribing practice across the system. I will happily pick up the point about ensuring that biosimilars are incorporated in that.

[Andrew Stephenson (Pendle) (Con)]

4. What progress has been made on improving diagnosis and treatment of Lyme disease.

--- Later in debate ---

[Mark Durkan (Foyle) (SDLP)]

6. What steps he is taking to improve the outcomes of people with rarer cancers.

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

The extraordinary pace of progress in biomedical science, not least in genomics and data, is transforming our understanding of cancer. It is leading to greater identification of more rare cancers, and indeed to more diseases becoming rare diseases. That is why we have invested so heavily in Genomics England and set up the 13 genomic medicine centres around the UK, leading in cancer and rare disease diagnosis. I am delighted that we are now setting up a Northern Ireland General Medical Council, which will collect 17,000 samples. We will implement the recommendations of the independent cancer taskforce on diagnosis and we are setting up a series of regional genetic laboratories and infrastructure. I believe the hon. Gentleman will be able to see that we are investing heavily in making sure we lead not only in the science but in the adoption of genomic medicine in the NHS.

[Mark Durkan]

I thank the Minister for all that, but remind him that there is concern about the implications of the cancer drugs fund details, as they will affect people with rare cancers. Is he prepared to promote progress on rare and less-common cancers as part of the new work programme for the British-Irish Council? The challenges of small patient numbers, thinner investment in research, and symptoms being less well known are not confined to his jurisdiction.

[George Freeman]

The hon. Gentleman makes an important point. In both Northern Ireland and the Republic, I have seen some great leadership in this field, and as the UK Parliamentary Under-Secretary of State for Life Sciences, I would be delighted to pick this up through that council, and suggest that our nations, working together, can collaborate better, not least in implementing the accelerated access reforms that I am putting in place. Those reforms, aligned with the cancer drugs fund in its revised format, should see us able to accelerate the adoption of drugs for rarer cancers for patients’ benefit.

[Mr John Baron (Basildon and Billericay) (Con)]

In part because they are the hidden majority, people with rarer cancers are often diagnosed later, often through an emergency presentation. That can make for more aggressive treatments, which can have a longer-term impact on health. Will the Minister update the House on tailored recovery packages, and the plan to roll those out that was outlined by the Government back in September last year—a Government who have, I must say, been a great friend to the cancer community?

[George Freeman]

I am very grateful for that acknowledgment. We have put £1 billion into the cancer drugs fund, and we are completely committed to increasing the pace at which we bring cancer drugs through. It is true that cancer outcomes have improved quickly since 2010; in 2014-15, over 645,000 more patients with suspected cancers were seen. That is an increase of 71%. Almost 40,000 more patients were treated for cancer—an increase of 17%. We have announced funding of up to £300 million a year by 2020 to increase diagnostic capacity, so that we can meet the new target, which is that patients will be given a definitive cancer diagnosis or the all-clear within 28 days of being referred by a GP.

[Danny Kinahan (South Antrim) (UUP)]

We are very grateful for all the work that is going on, and for how we are pulling together and working as a United Kingdom, but is there any way of helping those people who cannot afford to travel to the specialists to get the treatment? That is a huge chunk out of a devolved budget, and it is something that we should be working on together.

[George Freeman]

I will happily look at that as part of the discussions with the council that I just touched on. We are determined to make sure that this life science revolution is not just in the Oxford-Cambridge-London triangle, but goes out across all the devolved areas, which of course are leading on much of the science. That is why we are committed, through the National Institute for Health Research and the NHS, to creating hubs across the country, so that everybody can benefit.

[David Tredinnick (Bosworth) (Con)]

Is my hon. Friend aware that about a third of people, including those with rare cancers, will, on their cancer journey, use some form of complementary or alternative medicine? Is he further aware that there is a range of new treatments out there that are being used in the private sector, including virotherapy and hyperbaric oxygen therapy? The second particularly can help people who have serious effects from chemotherapy and radiotherapy. Will he look at some of these treatments and write to me about them?

[George Freeman]

I am not against people taking whatever they feel helps, but my hon. Friend will understand that in this field, in allocating every pound, we need to be guided by the very best science and evidence. Internationally, we are applauded for the quality of our assessment, and I intend to do everything to make sure that that continues.

[Dr Andrew Murrison (South West Wiltshire) (Con)]

Outcomes in cancer are not just about survival. Does the Minister agree that nowhere is the case for a seven-day NHS stronger than in palliative medicine, and will he say what can be done, in rolling out the 7/7 NHS, to address the scandal whereby only one in five hospitals has specialist palliative care cover on a Saturday and Sunday?

[George Freeman]

My hon. Friend makes a really important and specific point. He is absolutely right, and that is one reason why we are committed to our seven-day NHS. It is improving—I can share the data with him—but he makes a good point, and that is one reason why we need to continue.

[Chi Onwurah (Newcastle upon Tyne Central) (Lab)]

8. What assessment he has made of the effect of changes to local authority social care budgets on demand for health services.

--- Later in debate ---

[Mrs Cheryl Gillan (Chesham and Amersham) (Con)]

T8. My constituent Archie Hill and his parents, Louisa and Gary, were really excited when, on 15 April, the National Institute for Health and Care Excellence recommended that the drug Translarna—a breakthrough drug for children with Duchenne muscular dystrophy —should be funded by NHS England. Hon. Members can imagine what happened when, on 4 May, NICE unexpectedly announced that it required extra time to come to an agreement with NHS England. What is going on? We thought this drug had been cleared. Time is of the essence, because the boys affected are eligible for this drug only if they are still walking. Can we please look into this issue, and can we please go back to the original timetable? After all, these boys have had to wait several years to get to this stage.

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

I commend my right hon. Friend, and we have had numerous discussions over the last year on this subject. She can rest assured that I am actively doing everything I can to make sure we expedite this. She will understand that there are important negotiations with NHS England, NICE and the company at the moment, which are key to making sure we can get this drug accelerated quickly.

[John Mann (Bassetlaw) (Lab)]

T6. Other EU countries charge us £650 million a year more for the health treatment of our citizens abroad than we do for the treatment of their citizens here. Is that because we cannot charge them, or because we have not got our act together?

Digital Records in the NHS

George Freeman Excerpts

Thursday 28th April 2016 Westminster Hall

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

Thank you very much for making that point, Mr Wilson. It is a great pleasure to be here, and I am extremely disappointed not to have had notice that the debate had been brought forward. I am assiduous in attending these excellent debates in Westminster Hall, and on this subject more than any other. I will be having strong words with my office to ensure that I understand why the information was not communicated to me that the debate had been brought forward. I can only offer my apologies to hon. Members, all of whom know my passion for this subject. If there is any debate I would most want to have been at, it is this one, so please accept my apologies. I was alerted about six minutes ago that the debate had started, and I ran here. I cannot understand why this has happened, but I will happily look into it.

Thank you for the opportunity to respond to the debate, Mr Wilson. I start by congratulating the Backbench Business Committee on granting it and my hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown) and the others who have spoken. I will say more in a minute about the points that they made, but it is incredibly timely to be having the debate now. I am grateful to the hon. Member for Bristol South (Karin Smyth) for her long list of questions, which I will do my best to plough through. If I miss anything, I will happily write to her to deal with it, particularly on one or two of the more detailed questions.

I genuinely thank my hon. Friend the Member for The Cotswolds for bringing this subject to the House. Although it perhaps is not a topic that is discussed down the Dog and Duck, many of the issues that it speaks to are discussed down the Dog and Duck—modern healthcare, research and the NHS’s role in helping to find new cures. My hon. Friend has been a doughty advocate of this subject in the House, not least in his advocacy of the Empower: Access to Medicine campaign on behalf of his late constituent, Les Halpin, who has been an inspirational figure to him and to many of us.

I also thank and pay tribute to my hon. Friend the Member for Bury St Edmunds (Jo Churchill), who has made a reputation very quickly in the House on the subject of medical research as a double cancer survivor herself and as a passionate advocate of how we can accelerate innovation in the NHS and harness the NHS as a catalyst for innovation and accelerated access to new treatments and drugs. My hon. Friend the Member for Twickenham (Dr Mathias) brings to the debate considerable professional expertise, as well as the passion with which she has spoken here this afternoon and elsewhere in the House.

The hon. Member for Bristol South gave a genuine signal of bipartisan, cross-party support for this broad agenda, which is extremely welcome. There are issues in the House on which it is entirely appropriate for the Government and the Opposition to knock seven bells out of each other. It is the Opposition’s job to oppose and ours to govern, and democracy would be ill served if we did not, but there are topics on which it is in the public interest that we seek agreement, and medical research is one of them. Indeed, in this Chamber on Monday of last week—it seems like a month ago—we had an incredibly packed debate, perhaps the most packed debate in Westminster Hall ever, on brain tumour research. The House was speaking with one voice, and I was delighted to be able to respond, surprise some and launch a working party to take forward the points that were made.

I thank the hon. Member for Bristol South for her signal of support in principle. That is heartfelt because this agenda—the use of data in a 21st-century health service to accelerate the search for cures and to prevent unnecessary suffering from tomorrow’s diseases and those that we do not have treatments for today—is precariously at risk from badly communicated policy and a media, public and political discourse that sometimes misses the detail of how data are actually being used. It is all too easy to jump on a bandwagon and launch a campaign to say, “No data to be used”. That would profoundly betray those who are suffering from disease today who want their experience to help to prevent disease tomorrow, and the pioneering clinicians, doctors, academics, researchers, charities and patients who have done so much to demonstrate the important role that data have to play in research. I therefore genuinely welcome the hon. Lady’s support in principle. I respect that that means she wants specific questions answered, and I will do my best to answer them.

I want to set the scene as to how and why the debate has come to a head, why the digitalisation of the health service and the use of data in health have become so topical, and why we have reflected that through the creation of this new ministerial role in the Department of Health. As the first Minister for Life Sciences, with responsibility for all of digital health and health data within the Department, I want to say something about the Government’s fundamental commitment to securing and safeguarding public trust and confidence as the bedrock of the digitalisation of the NHS. I will then say something about the commitments that we have made to that programme and the timetable and funding for it. I particularly want to pick up on the question of electronic health records, on which my hon. Friend the Member for The Cotswolds has rightly focused today’s debate, and how we see the electronic health record revolution in this Parliament and beyond transforming the three key pillars of the debate: individual care, system safety and performance, and research. When people ask why we need data, those three pillars are my first three answers.

I came to this agenda from the research end, after a 15-year career in biomedical research. In the past 15 years, the power of informatics—the power of applied computing—has come to transform how drugs are discovered. I am talking about individual data on the deep history of a patient’s journey through disease—their genomic predisposition, their clinical records and the way they react to different drugs—but also, on the other axis, about large-scale, anonymised cohort studies of patient experience. We can look, for example, at diabetes patients; why do 80% of UK diabetes patients respond in this way and not that way? A combination of large-scale, anonymised cohort studies and individual, in-depth personal patient histories can change, and indeed is changing, the way drugs are discovered.

I have seen with my own eyes in the industry how, in the last 10 years and even in the last five, work has very quickly come back to clinical assets and to starting the process of discovery with patients—with tissue, with data, with the clinical, human experience of disease. Understanding how different patients live with disease and respond to drugs is the starting point for research. The way the industry worked when I first joined it was that one would start with a theoretical, academic target for a possible drug and then go through an expensive 15-year process—it would now cost $2 billion—of long-term academic work followed by the pre-clinical stage and phase 1, 2, 3 and 4 trials, only to discover in about 80% of cases that the drug did not work in people. The industry is rapidly changing, to start with the experience of real people with real disease and to understand how disease takes hold in real people in real time.

One of the many benefits of this revolution is that we will reduce our dependence on animal tests. There will always be a need to involve animals in research, but we can reduce that need to an absolute minimum. The more we can start with data and an understanding of how particular patients respond, the more we can dramatically accelerate our search for both diagnostics and treatments.

As I said, I came to this agenda from the research end. Research has been significantly accelerated in this country over the past 20 or 30 years, for instance by the creation of the National Institute for Health Research and by the work of Professor Dame Sally Davies, the chief medical officer, in funding and setting up our clinical academic research centres. It is my great privilege to be the Minister responsible for that £1 billion-a-year infrastructure, and for the comprehensive biomedical centres that we have set up. For the past 15 to 20 years, there has been phenomenal use of data in tertiary research hospitals to drive research and improve care.

In many ways, the aim of the programme that I will discuss in a moment is to spread out the benefits of that advanced modern healthcare, and the embedding of research in clinical practice, to the rest of the national health service. For research purposes, the use of data is not an optional extra; it is an absolute fundamental. No researcher in the world would dream of trying to run a research programme without access to up-to-date data.

The programme is also about system safety and performance, and about individual care. If hon. Members have been to a GP clinic or a hospital recently, they will have quickly noticed that all the diagnostic devices and most pieces of treatment equipment are digital. Health is going digital. Conferences refer to digital health as if there were still analogue health, but health is going digital very fast, just like every other aspect of life. If the system is to give patients individual care, we have to digitalise it.

Any of us could, God forbid, clutch our chest, go down and need an ambulance. When the ambulance comes for me, I want the staff to have not a biro and a pad but an iPad. I want them to know my blood group, my allergies and my history when they get to me and when I go to A&E. Hon. Members might be amused that when I first gave a speech on this topic, I referred to a photograph outside my office in the Department of Health. It is an inspiring photograph of the NHS, there for us 24/7: a picture of a paramedic leaning out of an air ambulance over some remote island, probably in the Shetlands. A wave is breaking on the lighthouse, the poor patient lies in the heather waiting for the ambulance, and out of the air ambulance leans a paramedic holding a pad of paper and a biro. I said that when they come for me I want them to have an iPad, and the photograph was taken down within days of my speech, which was the first small sign of progress.

The important point is that we have set a target to ensure that electronic health records are used first in A&E, because that is where rapid response—getting the right drug to the patient—has the most dramatic effects. That is true across the care pathway. Most constituents say to me, “Mr Freeman, when I go from the GP to the hospital to the care home and back to the hospital, why do I have to repeat my diagnosis and my treatment history to the clinicians? Surely my patient record should follow, or even go ahead of me, through the system.” That point is very well made.

Most of my constituents desperately want individual care, so that the system knows who they or their loved ones are when they arrive. When somebody arrives at hospital after being referred by a GP, they want the hospital to know who they are, why they are there, what the referral was for and what the treatment is.

[Geoffrey Clifton-Brown]

The Minister has a huge knowledge of the subject, and I respect enormously what he is trying to do. One thing that has come out of the debate is that there is still a significant amount of public resistance to digitalising patient medical records. However, it is clearly in the interest of all of us. Those of us speaking in this debate are converted to the benefits of digital records. Will the Minister consider running a Government public information campaign showing the distinct benefits of digitalising patient medical records and how it can help the NHS? Will he also consider creating some form of post within Government to oversee the process—something like a health information commissioner—so that there is consistency right across the NHS as to how the digitalisation will be rolled out?

[George Freeman]

My hon. Friend makes an interesting point. I will come to our plans, and to the process and timetable for setting out the national data guardian’s recommendations on how we should proceed. I would expect that one of her recommendations will be about the importance of communicating to the public and patients why data are so important. As part of the annual National Institute for Health Research Parliament day that I launched, we might have a themed event focused on the power of data and why they are so key to a 21st century NHS.

[Dr Mathias]

We have been talking about the speed with which the Government should be digitalising records, hence the idea of a chief of information for the NHS. I believe that the public are already ahead of the Government. That is the problem—I fear that the Government may already be too late. There are too many apps out there, too many different clinicians are doing different things and too many patients are devising their own systems. We are behind everybody else.

[George Freeman]

My hon. Friend makes an excellent point. She knows my frustrations with the situation, and the truth is that healthcare is digitalising very fast. That is not just driven by commercial app manufacturers. As she says, many doctors are developing apps for their own benefit and that of their patients. Many patients are also developing apps. The revolution is coming. Part of our strategy is to ensure the digitalisation of the NHS, which is no mean undertaking. In fact, I would liken it to Crossrail and HS2 as a global project. It is the digitalisation of the world’s fifth biggest employer—a vast undertaking. There are a number of lessons to be learned from previous Government initiatives.

In many ways, we are catching up. The challenge is to catch up in a way that understands the pace at which healthcare is digitalising and seeks not to monopolise, but to provide an aircraft carrier—a mother ship—on which the exploding range of various digital healthcare products can land. I have mixed my metaphors in an ugly way there, but the challenge is to turn the NHS into a catalyst for leading and unlocking NHS leadership in digitalisation.

I totally accept the point made by my hon. Friend the Member for Twickenham that, in many ways, we are catching up and trying to provide a platform for leadership in a rapidly emerging space. In response to the point that she and my hon. Friend the Member for The Cotswolds made about the need for leadership in the NHS, I can confirm that NHS England is about to appoint a chief information technology officer. A major part of that function will be to be lead champion, to explain and to be a point of patient information in the NHS.

Through the creation of my role, we have for the first time created a single ministerial portfolio with responsibility for this area. Until the post was created, every Minister in the Department had a little bit of information and digitalisation in their portfolio, which in many ways was appropriate but also meant that there was no single point of leadership. Part of my mission is to ensure that the Department brings that together.

The three great pillars that require the quiet revolution of digitalisation include research and individual care. However, I want to touch on the third pillar, which is system safety and performance. The NHS is the fifth biggest employer in the world. It is an incredible public service and an incredibly complex set of organisations. We talk of it as if it were one, but under the national health service’s magnificent initials are a whole range of GPs, hospitals and care providers, which all operate independently within a healthcare system. We are building the railway tracks for patients’ records to move along, so that we integrate them. A fundamental part of that, in addition to research and individual care, is ensuring that the NHS can deliver an essential contract with patients in a 21st century health system. We have a duty to know where best practice is and where worst practice is. We should not have to rely on whistleblowers to put themselves at huge personal risk by sighting and highlighting worst practice. The computer will do it for us.

The other day, I looked at a piece of software that was developed—for a very small amount of money, by the way—by an Oxford academic. It shows prescribing data for one important class of drugs across the whole of NHS England. There is one outlier, and it happens to be in Norfolk, which is why I took a particular interest. It is clear that there is a very small group of GPs that somebody has not got the guidance to or rung up. I am sure that as soon as those GPs have the information, their prescribing practice will fall into line with the rest of the country.

That is computing power being used to promote patient safety and efficiency. The third pillar—system safety and performance—is important, and one of the lessons from the Francis report is that we need to use data much better to identify best and worst practice. When people ask why we are doing this, I suggest that it is for those three noble purposes, which support each other. The digitisation of the system should drive patient care, system safety and research, and the same datasets run between them.

Crucially, the Secretary of State and I understand that the whole digitisation programme has to be rooted and covenanted in deep and profound respect for public and patient trust and confidence. I am not revealing a state secret by saying that I am not sure that that has necessarily been the case until now, for a whole range of reasons, but partly because Government have seen digitisation as inevitable and, as my hon. Friend the Member for Twickenham suggests, slightly overdue, and therefore not something that needs to be announced. Of course, the Government are always coy about admitting problems, but I am not coy about saying to people that we are still running the NHS, in large part, on paper and cardboard, which is a problem that needs to be solved.

Unless we describe the problem clearly, we will not carry the public with us in solving it. My magnificent local hospital, the Norfolk and Norwich, has a data repository with 10 miles of shelving on which patient records are kept, held together by treasury tags and paperclips. I do not know about other Members, but I am not prepared to say to my constituents that that is an appropriate way to store their information, and indeed, my information, my mother’s information and my children’s information. Each hospital separately stores records of which patients came to it and when, which does not speak to a properly joined-up system. It is a national health service—the clue is in the name—and when someone clutches their chest in an unfamiliar bit of the country, they expect the national health service to know who they are. That is one of the benefits of a national health service. From the point of view of properly integrating, we need to explain to people where the current system is not able to deliver.

It is for that reason, and because we want to carry public trust and confidence, that the Secretary of State and I are shifting from what I crudely characterise as an agenda that, to the extent that it has been discussed publicly, has been called long overdue, essential for the running of the system, and something that patients do not need to worry too much about. Well, we only have to say the words “big data” and “big government” to most people in this country for them to be alert to the risks of what might be happening behind their back. I am trying to do it differently by saying to people “This is an urgent, overdue, phenomenally exciting and complex project that we are doing in the interests of patients,” for the reasons I have just set out. Public trust and confidence are essential to the project, and I am not revealing any state secrets by saying that NHS England’s care.data consultation last year did not demonstrate global best practice in consulting patients. It was a well-intentioned leaflet that was sent to every house, which of course does not mean that every person in the country read it, and for many people the wording was as confusing as it was enlightening. That is one of the reasons why the Secretary of State and I have gone to such lengths.

We have appointed the first ever national data guardian in Dame Fiona Caldicott, a widely respected expert in the field, to advise us on the right protocols and safeguards for ensuring that public and patients can have trust and confidence in the system. Dame Fiona has carried out an extraordinarily detailed piece of work, and her recommendations will be landing on our desks imminently. She has considered the whole range of issues, including consent; how many data should naturally flow in the system for it to function; which data transactions should be subject to additional patient consent; what the standards should be; and what the relationship between the various bodies should be in terms of accountability. That work is very important.

We have gone further and asked the Care Quality Commission to carry out a major piece of work on best practice in the system today and to set a benchmark so that we can hold the system to account. We have set up the digital maturity index, and this spring each clinical commissioning group has had to report, for the first time, on the level of digitisation in its local health economy, and we are building that into the CCG annual assessment framework so that people will be able to click on My NHS and see heat maps of the extent of digitisation across the country, which will help us to identify best and worst practice and to accelerate the roll-out.

We have also appointed Professor Bob Wachter, the American digital health expert, to come over and help us consider the cultural issues of ensuring that the NHS is properly training and supporting practitioners. It is about the human element, because we can have as many systems and technologies as we want, but it ultimately comes down to culture, practice and patients’ records being respected and treated appropriately by the system. I hope Members can see that we are taking seriously the need to put in place a series of measures that carry public trust and confidence.

[Dr Mathias]

Will the Minister ensure that there is a two-way exchange of information and transparency so that, if the NHS has my medical data, I am always offered, in a secure form such as a personal Dropbox, or whatever form I wish, everything that the NHS has on me? Every patient must be offered all the data that the NHS has on him or her.

[George Freeman]

Unsurprisingly, my hon. Friend makes an excellent point. She will know that my first parliamentary foray into this space was by championing a ten-minute rule Bill on patients’ rights to patient data. Like her, I believe that, in addition to the three noble pillars I set out, there is a fourth pillar. Not only does the digitisation of health have benefits for the system in delivering healthcare in a safer, higher quality and better way but, almost more importantly, it helps the transition of healthcare from something that, in the 20th century, was essentially done to patients by a largely benign health state—an essentially passive model of “Come to us when you are sick, and we will treat you as best we can. You can then return to normality”—to a model of healthcare for the 21st century that is all about empowering active healthcare citizenship by modern citizens. We give them the information, and we allow them to understand and take control of their health and life choices, not in a punitive way or in a way that says, “If you don’t, or if you are irresponsible, you will be ineligible,” but in a way that tries to inspire and promote a culture of active healthcare citizenship.

Putting information in the power of patients and their loved ones, in the same way as in banking and in all other important aspects of our lives, will pay huge public health benefits, with people using information and data to drive lifestyle choices. Indeed, Members are already seeing that. One of the ironies of this space is that some of the most rapid digitisation driven by patients is by the so-called “worried well”—those who take their healthcare seriously and are using Fitbits and other devices to monitor calorie intake, exercise and sleeping patterns to keep themselves out of hospital. The system should use those technologies to try to deliver better care, and we want to integrate the two so that more and more patients are able to harness such technologies to empower themselves. Ultimately, the Secretary of State and I want to get to a point where that transparency and empowerment drives the relationship with healthcare recipients, as healthcare citizens, choosing where to have their surgery and holding the system to account. Intelligent digital transparency is the greatest driver of a modern healthcare system so that every day, every hour and every week the massive diagnostic and treatment footprint of the NHS is mapped digitally, allowing patients to know that they are actually controlling the system, which is there for them.

Some clinicians, particularly GPs, take a different view—that the sovereignty of their relationship with their patient means that their patient’s data belong to the clinician, which is an interesting point. Most patients feel that their data belong to them and that they should have access to their data. There are ethical issues, as well as the question of the appropriate relationship between clinician and patient, and in no way do I want technology to get in the way of, or to undermine, that sovereignty. Indeed, the clinicians to whom I speak say that the digitisation revolution allows them to focus their professionalism and judgment on what really brought them into clinical practice, which is dealing with their patients, while the computer does what they no longer have to do—recording and accessing in a split-second all the information the clinician needs to make their judgments. Technology can support that relationship, rather than undermining it.

[Dr Mathias]

In defence of the clinicians out there, I am sure the majority believe that the patients they serve are sovereign.

[Phil Wilson (in the Chair)]

Minister, before you respond, may I say that you have been on your feet now for 30 minutes and the Minister’s response is usually about 10 minutes? I just want you to bear that in mind.

[George Freeman]

Thank you, Mr Wilson. Having arrived a little late, I was taking the opportunity to deal with the points that my hon. Friends and the hon. Member for Bristol South have made. I will do my best to expedite matters for you.

I want to make the point that the covenanting of public trust and confidence is completely central for the Secretary of State and me. We want to make sure that the public have faith and confidence that we are not in any way playing fast and loose, and I hope that the measures I have announced will go some way to underpinning that.

We have also gone further. People have been concerned about the selling of their data for purposes beyond healthcare—commercial purposes—particularly those that may prejudice their eligibility for healthcare. We have not only made it clear that that is unacceptable; we have made it illegal and imposed a substantial fine and penalty on it. We need to use data but we need to use them appropriately, and we need patients and the public to know that that is our commitment.

On the commitments that we have made, we have secured funding from the Treasury for the completion of the paperless NHS 2020 project, which the Secretary of State has set out in other speeches in some detail. It is a £4.2 billion funding commitment, and in the past few months, since the completion of the comprehensive spending review, officials in the Department of Health, in NHS England and in the Health and Social Care Information Centre—which I recently announced is to be renamed NHS Digital—have been working on a complex work plan for seeing this through. It comprises 26 workstreams in six domains, and we are very committed to making sure that this is properly managed with clear milestones and clear accountability procedures. The project is complex and some things will not go according to plan. We need to make sure that we are on top of that and bringing the very best levels of management to that project.

I want to cite one or two examples of where we are profoundly leading in this space. One is a project for which I have ministerial responsibility—the 100,000 Genomes Project, in which we are sequencing the entire genomes of 100,000 volunteer NHS patients, and combining those with hospital data to form the world’s first reference library for genomic medicine. All the information is consented, and the project represents a pioneering showcase of the use of data in 21st-century health research. We have also launched a genomic medicine service in the NHS through the 13 genomic medicine centres. We want the NHS to pioneer genomic diagnosis and treatment, particularly in cancer and rare diseases. It is a shining informatic and digital data programme as well as a genetic science programme.

I also want to highlight a project that I recently saw, which goes to the other end of the spectrum: the day-to-day management of disease. It is a diabetes service pioneered, to my great joy, by Litcham surgery in my constituency. It involves patients self-monitoring their blood sugar levels, and barcode and digital transmission of that information back to the GP practice. I went to see it in use. Patients go to the consultation and the nurse comes with their data, which is used to monitor their precise condition. That leads to the use of the very latest drugs in ever-more accurate precision dosing and comparative data across all participating GP clinics, which drives up standards. It is a brilliant example of data being used to improve care and the use of novel and precision medicines in the NHS.

[Geoffrey Clifton-Brown]

I alluded to that in my speech. The next stage on from that is for the individual patient to be able to access the data themselves, which I do not think they can in the example that the Minister cited. I think there have been cases where patients have hacked into the data to get the information for themselves so that they can then see what is happening to their own body and adjust the amount of a particular drug—insulin or sugar or whatever it happens to be—without having to have recourse to a nurse or even a hospital.

[George Freeman]

My hon. Friend makes an interesting point, as did my hon. Friend the Member for Twickenham. As part of this quiet revolution of patient empowerment, the clinicians I speak to actively want their patients to have the data and are encouraging them to have it. This is where the apps revolution comes into play, because that is one of the ways in which we are putting this information in the hands, laptops and phones of patients. He is absolutely right that care is improved, but we want to improve patients’ understanding of their condition and improve patient empowerment.

The other example I want to cite is an inspiring example set up at King’s College London by Professor Simon Lovestone: the case register information system in mental health and psychiatry, which is a difficult area of research, as colleagues know. It puts together patient records from across the 250,000-patient catchment area of South London and Maudsley and combines them with MRI brain scans, the digitisation of patient medical records and very complex drug histories in mental health, to build the world’s first reference database for trying to understand the causal mechanisms for complex psychiatric disorders. It has attracted phenomenal industry co-investment alongside the NIHR centre of excellence and is a shining example of how we can use information and data to drive both research and improved care.

On electronic health records, which are important and which this debate was focused on, the ultimate goal is to have a system in which our individual health records flow seamlessly across the system in advance of patients. That is the goal of the paperless NHS. We have set out a series of specific commitments—I can write to the hon. Members here about them—for this year, next year, 2018, 2019 and 2020. They set out clear targets for how the electronic health record will be used and brought to bear—percentages of penetration in A&E, in the ambulance service and then mainstream across the service.

My hon. Friend the Member for The Cotswolds makes an important point. We need to identify some early uses of electronic health records, which may not be comprehensive and universal, and put this benefit in the hands of patients as quickly as possible. One of my missions is to ensure that we get some basic but powerful uses of electronic health records in iPads, phones and devices, so that patients can see their experience beginning to improve today.

[Karin Smyth]

I appreciate the Minister’s enthusiasm and his great knowledge of this sphere. He is probably one of the people who has benefited in his career from the Labour Government’s reversal of the brain drain in the 1980s and 1990s, when they invested heavily in research and technology in the great institutions that he has talked about, which has led us to this point. I look forward to the timeline. He has highlighted how we have Dame Fiona Caldicott, the CQC and—forgive me; I missed the name of the gentleman from America—the practitioner who is coming to talk to us about the culture of patient data. We have CCGs reporting into NHS England and NHS England’s capability on the ground to deliver and support providers to make this deliverable. I do not wish to make a party political point on that, but the frustration shared by those of us who understand how those systems work on the ground will not be helped by having a plurality of people. Who will be in charge of the work plan with its 26 workstreams to make this happen?

[George Freeman]

The hon. Lady makes an important point. It is being driven by the National Information Board, which is NHS-led and involves all the key stakeholders within the service. It is a shining example. I recently spoke at its annual conference, and NHS clinicians will tell you that they are setting the protocols and programmes through the NIB. I genuinely do not believe that the establishment of Dame Fiona Caldicott and the CQC and Wachter reviews are distractions. They are intended to try to support clinical pioneers in the service.

I understand the point that the hon. Lady makes about the service being under pressure, which it is. The demand for healthcare is exploding, and NHS England has set out in the “Five Year Forward View” that digitisation and the greater use of technology is essential to reducing unnecessary pressure on the system. It has forecast that in 2020 we will be looking at £22 billion of avoidable costs from hospital admissions, from bureaucracy, and from paperwork. How many of us have had a diagnosis and received three or four, sometimes five, letters all saying slightly different things? That is incredibly wasteful and expensive.

NHS England itself has identified the fact that if that technology is properly implemented it can play a part in driving efficiency. However, I do not underestimate the extent to which that requires investment—which is why we have front-loaded it—as well as capacity and the ability to integrate. That is a challenge. When those systems are put in place in the private sector, huge numbers of people and huge amounts of resources are devoted to driving the integration properly. I would expect Dame Fiona’s review to touch on that, particularly in relation to training, and organisations’ culture and capacity.

However, things are happening. I want to share the data. More than 55 million people in England now have a summary care record. That is 96% of the population. As to how many are aware of that, it is an excellent question. How many of us have obtained access to our summary care record? That is important. Eighty-five per cent. of NHS 111 services, 73% of ambulance trusts and 63% of A&E departments now use the summary care record, and by April next year more than 95% of pharmacies will have access to it. By 2018 clinicians in primary care, urgent and emergency care, and other key transitions of care context will operate without paper, using the summary care record.

Several colleagues have touched on the question of apps today. We have clearly set out, through the National Information Board, a commitment to ensure that there are high-quality appointment-booking apps, with access to full medical records, from this year. NHS England and NHS Digital are working with GP system suppliers and third-party app developers.

[Phil Wilson (in the Chair)]

Order. May I just respectfully say to the Minister, you have now spoken longer than the Member who moved the motion for the debate. You turned up an hour late and have now spoken for 40 minutes. I just want you to bear that in mind. The debate does go on to 4.30, but I respectfully point out that Ministers who have been present for the full debate usually speak for just 10 minutes. Hopefully you will bear that in mind, and are reaching the end of the speech.

[George Freeman]

I was trying to signal my respect for the questions that have been raised by giving comprehensive answers, but I will try to wrap up.

There is a major programme of work on apps, led by the NIB. That is to create a framework in which approved apps can be launched on the NHS Digital system. They need to be approved, so that patients have trust and confidence that they are verifiable and appropriate and can fulfil the claims they make. Ultimately we see NHS Digital as a major platform for sponsoring and developing those apps. We are not alone in that. There are stunning international examples. Estonia launched its electronic health record in 2009 and it is worth having a look at what it is doing. The US Veterans Association provides an integrated in-patient and out-patient electronic health record for VA patients. I will be in Washington in 10 days to look at that system again. Denmark is doing some extraordinary work, with more than 45% of patients now contacting their GPs digitally and using digital technology.

In accordance with your strictures, Mr Wilson, I will cease to set out the Government’s programme. I shall happily write to all those who attended the debate—particularly in response to the questions raised just now by the hon. Member for Bristol South about GP funding and what streams funding is coming through, as well as any other questions that I have not had the chance to answer. Once again I apologise for being late; I had no idea that the timing of the debate had changed. I hope that I have addressed the points that were made.

Antibiotics: Research and Development

George Freeman Excerpts

Tuesday 26th April 2016 Westminster Hall

[The Parliamentary Under-Secretary of State for Life Sciences (George Freeman)]

It is a great pleasure to serve under your chairmanship, Mr Evans. I believe we are expecting a vote, so my speech may be interrupted. I shall crack on, awaiting the bell.

I congratulate my hon. Friend the Member for York Outer (Julian Sturdy) on securing the debate and on the tenacity with which he has raised this issue in the House in recent years. It is a great opportunity to have this debate today, when so much is going on this week in London on international health leadership. My hon. Friend’s speech and the informed and constructive comments that he and others have made highlight how seriously this issue is taken throughout the House. Last Monday we had more than 60 Members of Parliament in this Chamber. The fact that we have a dozen today does not suggest that there is any less interest; many Members are tied up in other debates. I know that Members from all parties are concerned about this issue.

The debate is timely, because it coincides with a two-day international summit on antimicrobial resistance convened by the Wellcome Trust in London, which brings together a global gathering of scientists and policy makers to explore key areas for action. I thank the Wellcome Trust and pay tribute to it for its leadership. In so many areas of public policy, it has put its money and expertise to work for us. I also pay tribute to Jim O’Neill and his team, as others have done, for their work on the issue.

I will set out the context of the debate, as a number of other hon. Members have done. Antibiotics play a crucial role not just in human health but in animal health and welfare—my hon. Friend is a doughty campaigner for agricultural causes—and so are of great strategic interest in the wider field of biosecurity. We have seen the impact of diseases in domestic and agricultural poultry and in some of our tree species, and we are trying to view this issue in the wider global context of biosecurity from infectious diseases.

[Jim Shannon]

There have been some marvellous steps forward in addressing the use of antibiotics on poultry, as I indicated in my speech. Many people are trying to move that forward. If we take steps forward with poultry and other animals, we can transfer that work to humans too.

[George Freeman]

The hon. Gentleman makes an excellent point. As ever, Belfast University and the Northern Ireland life sciences cluster are doing good work in agriculture and in the medical space.

For the reasons that I outlined, the growth of resistance presents a genuine strategic global threat, which, as hon. Members from throughout the House have gratifyingly acknowledged, the Government have taken a strategic grip of. Globally, some 700,000 people will die this year because of antimicrobial resistance. In Europe, the healthcare and societal costs of resistance are estimated to be of the order of €1.5 billion per annum. That translates into a verifiable and measurable cost to the NHS of £180 million, but it may well be an awful lot more. Meanwhile, we face an antibiotic discovery void. The golden age of discovery ended in the 1980s. We have had very few new antibiotics since then and no new class since 1987.

I had a 15-year career in the sector and spent one chunk of it starting, financing and managing a small anti-infectives company that was spun out of Hammersmith and Imperial College and used some phenomenally powerful technology to look at the genetics of how microbes reproduce. We spent a lot of money on some elegant science, but we did not produce a new anti-infective. The truth is that these bugs are very difficult targets in biomedicine. It is difficult to go after the cell wall of Gram-positive and Gram-negative bacteria. Their ability to reproduce and develop resistance to drugs—they are moving targets, as it were—makes it particularly difficult to design effective drugs for them.

The good news—if I may put it that way—is that we can do things that will make and are making a real difference. The chief medical officer outlined the scale of the issue and its implications for public health in her 2013 annual report. She called for urgent action at a national and international level. The UK responded by publishing our five-year antimicrobial resistance strategy, the core aims of which were to improve understanding of resistance, to ensure that existing medicines remain effective and to stimulate the development of new antibiotics, diagnostics and therapies. Three years on, we have made considerable progress. We have put the building blocks for success in place, including better data, guidance and a strengthened framework—

--- Later in debate ---

[Mr Philip Hollobone in the Chair]

[George Freeman]

I leave Mr Evans for five minutes and he transforms into you, Mr Hollobone. I am grateful for the opportunity to serve under your chairmanship.

We are three years into our strategy and we have put building blocks in place, including better data and guidance and a strengthened framework for antimicrobial stewardship. I want to highlight one or two areas of progress. The first is surveillance. The UK has one of the most comprehensive surveillance systems in the world. We collect baseline data from which antibiotic prescribing and trends in antibiotic resistance can be monitored, and we are continuing to improve those data so that we can identify problems early and take action.

Alongside that, we have published outcome measures against which the UK will assess progress, and we have produced a range of tools and guidance to support best practice on antibiotic stewardship. We have introduced incentives for the NHS to improve the prescribing of antibiotics and the quality of data, which will be supported and enhanced by a set of AMR indicators that will provide NHS teams with local data on infections, resistance rates and prescribing, so they can set their own ambitions to take action and drive improvement locally.

Of course, it is simply not possible to look at the challenge presented by AMR without examining it from a global perspective. AMR is a global problem and no one country can tackle it alone. The UK has played and continues to play a major part, if not the major part, in raising awareness and pushing forward international commitment and action, as several colleagues throughout the House have acknowledged. We sponsored the World Health Organisation’s 2015 global action plan on AMR, we created the £265 million Fleming fund specifically to help poorer countries tackle drug resistance, and we are promoting work on AMR through the G7, the G20 and the United Nations.

The other, perhaps obvious point to make is that there is no single solution to antimicrobial resistance. We must prevent infection, conserve the antibiotics we have, develop new diagnostics and promote the development of new drugs. The UK’s strategic approach rests on those pillars, and they resonate across the world.

I turn briefly to the Jim O’Neill review. It is widely recognised that the systems on which drug discovery and development currently depend cannot and will not deliver the new antibiotics the world needs. Hon. Members have made that point clearly. That is why my right hon. Friend the Prime Minister established the independent review. It has run for two years and has made a comprehensive and highly informed assessment of the AMR challenge. Hon. Members will have seen some of the authoritative and readable papers the review team has published, setting out its thinking on a number of key areas, stimulating debate here and globally, and paving the way for the final report, which we all await and which is due to be published next month.

Not surprisingly, research and development has received much attention from Lord O’Neill’s team. It featured particularly in their paper on AMR and the antibiotic pipeline, which appeared in May 2015. That paper argued for the establishment of a global payer fund and an innovation fund to boost funding for blue-sky research into antibiotic drugs and diagnostics. Elsewhere in their publications, the review team identify some of the neglected areas of research that they believe such a fund could help address.

The Government’s response to the review team’s work will rightly follow the publication of its final report, which we eagerly anticipate. In line with our manifesto commitment to take forward the review team’s recommendations, that response will be positive, ambitious and timely, building on what we have already achieved. We do not intend to delay in a sector that needs urgent action.

One reason why the review team published their series of thematic papers was to stimulate international debate. The value of that approach was made very clear when the President of China came to the UK in the autumn, which led to agreement on a joint UK-China innovation fund modelled on the very proposal that Lord O’Neill set out. We have committed £50 million to that fund and are now in discussion with the Chinese on how it can be taken forward. We hope at the end of it not only to have increased financial collaboration in antimicrobial research and development, but to have brought together the best research teams from industry and academia in the search for practical solutions.

The review explored how the disincentive to antibiotic research and development presented by the absence of a viable commercial market could be tackled. Hon. Members will know that, as I have painfully experienced in the industry, there is an irony in the anti-infectives field. If a new class of anti-infectives is developed, they will tend to be used as a last line of defence, so the level of usage is quite low and patent protection is often not as significant as is required or justified by other drug discoveries. The fundamentals are not the same with anti-infective drug discovery, which is one reason why the standard model does not work as well as in other areas.

The Government are convinced of the need to look again at how we fund antibiotic development, based on Lord O’Neill’s groundbreaking work. It seems clear from that work and other studies that a global solution will be needed, although I cannot, of course, pre-empt what Lord O’Neill will recommend.

Inevitably, global solutions take some time to come to fruition, and for that reason my officials have had meetings with a number of pharmaceutical companies, including AstraZeneca, to discuss alternative approaches to reimbursement. They include the insurance model and a number of others that have been widely discussed. Progress is being made and the discussions are continuing. We do not intend to allow the potential delay in global discussions to get in the way of this country taking all the steps it can to facilitate our leadership in this space.

Meanwhile, Government investment in antimicrobial-related research here in the UK continues to grow. The Medical Research Council funds an AMR research funders forum, which we established to co-ordinate research across different funding bodies. The forum has set up a number of AMR-themed research programmes, and its members have together allocated some £36 million to them. Themes include resistant bacteria and how they interact with their hosts, and projects to speed up the development of therapies and diagnostics. At the applied end of the spectrum, the National Institute for Health Research is funding health protection research units at Oxford and at Imperial College. An NIHR research call has led to the allocation of around £15 million in support of some 16 projects.

I want to reinforce the point made by my hon. Friend the Member for York Outer and others about the important role of charities—not just the Wellcome Trust, which leads, but in the sector in general. In my reform of the life science space, I have made a clear offer to charities to come to the top table as we set out the policy and reform landscape. Medical research charities in the UK now invest £1.4 billion in research every year, which puts them at the top table alongside the biggest pharma companies. I am determined to ensure that they have a voice in policy setting to reflect their increasing voice in the research landscape. We are especially fortunate in this country to have the Wellcome Trust, whose work this week is timely.

My hon. Friend referred to the Antibiotic Research UK charity, which has been set up in his constituency. It is very encouraging to hear about that initiative and its work and ambition. He has had meetings about it with the Minister with responsibility for public health, my hon. Friend the Member for Battersea (Jane Ellison), and with the Prime Minister, and is being typically diligent in ensuring that its existence and profile are raised. He knows that I cannot pre-empt the outcome of the O’Neill report, but it is incredibly encouraging to see a charity coming forward in this space. We look forward to continuing to work with that charity and others in our response to the O’Neill report.

Antibiotic Research UK is, understandably, enthusiastic about what it has to offer. My hon. Friend the Member for York Outer and other hon. Members will understand that the NIHR does not award research money by particular therapeutic area. There are good reasons for that, which I will not go into in the few moments I have left. We fund the infrastructure and are open to research bids, and I encourage that charity and others to put bids together in conjunction with industry. We stand ready to support them. I have no doubt that when we respond to the O’Neill report we will look at how we can do more to encourage and support those bids.

In the time remaining, I want to deal with some of the questions that have been asked. My hon. Friend asked whether I would meet Antibiotic Research UK. I would be delighted to do that. It would probably be sensible to do so with my hon. Friend the public health Minister after publication of the O’Neill report, but I am happy to meet them before that.

My hon. Friend made a point about the foreign aid budget. He and other observers will have noticed that in the autumn statement we announced yet more funding from the prosperity fund to go into global public health. Whether in relation to vaccines or anti-infectives, we are determined to ensure that our international development spend addresses global public health issues, and we are harnessing UK science to that end.

My hon. Friend made a point about Sweden. We are trying to strike a balance between global leadership and supporting global collaboration. My position on that, as on wider EU affairs, is that I am ambitious for the UK life sciences sector, ambitious for life sciences in Europe and ambitious for the European single market in a global race for investment. We need every collaboration network we can get.

My hon. Friend the Member for Erewash (Maggie Throup) mentioned diagnostics, and she was absolutely right. She brings to the debate her experience and professional background. Diagnostics are key, and there is some very exciting work in that field. It is fair to say that the diagnostics sector is probably ahead of the therapeutic sector on this one.

The hon. Member for Poplar and Limehouse (Jim Fitzpatrick) asked about the Ross fund, as did a number of other hon. Members. It is good to hear the level of support for the fund, which is aimed at developing, testing and delivering a range of new products, including vaccines, drugs and diagnostics, to help combat the most serious infections in low-income countries. My right hon. Friend the Chancellor of the Exchequer announced the Ross fund with added detail in January, with a portfolio of projects and programmes led by DFID and the Department of Health. The hon. Gentleman asked which Department is responsible for that, and I can confirm that it is the Department of Health through the health research budget and portfolio, for which I am responsible.

Time is against me, but I want to deal with the point made by the hon. Member for Cambridge (Daniel Zeichner) about clinical trials. As a result of an awful lot of hard work across the Department, led by the chief medical officer and the NIHR, we are turning the corner on trials—we got recruitment to trials in the NIHR clinical trials network up from 200,000 to 600,000 last year. We are starting to see an increase in the number of first-in-human trials globally, which is an indicator of cutting-edge clinical science, and we have reduced the rate of time to first patient recruitment. We are never complacent—there is more to do—but we are turning the corner on global trial recruitment.

I believe that 2016 is set to be a critical year for the AMR challenge. The O’Neill report is shortly to land, as is my accelerated access review. We have secured a historic science budget for capital and revenue and a series of initiatives in global public health. We are well placed to convene and pull together that international leadership and ensure that British science is leading in what is ultimately, and needs to be, a global endeavour. I look forward to Lord O’Neill’s report and to working with colleagues across Government to implement it as speedily as we can to ensure that the momentum is maintained. I want this country to lead in what must ultimately be a global effort to find models to ensure that we bring all our science to bear to generate new diagnostics and new treatments. We must prevent the appalling situation, which a number of us have discussed today, of antimicrobial resistance becoming one of the great scourges of the 21st century.