The noble Lord also referred to the importance of people having trust in the system, and it is no accident that David Anderson’s report is entitled AQuestion of Trust. Indeed, he says on page 245 that,

“the road to a better system must be paved with trust”.

That is a central principle, along with the other principles he outlined. In the report he drew on some public opinion data and pointed out that, far from being sceptical about the security services’ use of data, there was wide support for it among the British public, and that:

“66% think that British security and intelligence agencies should be allowed to access and store the internet communications of criminals or terrorists; 64% back them in carrying out this activity by monitoring the communications of the public at large”.

That is not to say that this is the line we are going down. The Government are still considering all the options but the important thing is to work thoroughly, carefully and methodically. This report, along with that of the Intelligence and Security Committee and the RUSI report which is still to come, commissioned by the former Deputy Prime Minister Nick Clegg, will all provide the firm evidence base that we need to progress in this very sensitive area.

NHS: Innovation

Question for Short Debate

5.09 pm

Asked by Lord Wills

To ask Her Majesty’s Government what steps they are taking to encourage innovation by NHS England.

Lord Wills (Lab): My Lords, I start by welcoming the Minister to his new role and to what I understand will be his maiden speech. We overlapped for one Parliament in the other place, where he had a reputation as a thoughtful and conscientious Member of Parliament. Since then he has made a distinguished contribution to the work of the NHS. I am sure that he will make an equally distinguished contribution to the work of your Lordships’ House, and I am very much looking forward to his maiden speech.

It is generally accepted that the NHS is under unprecedented pressure from a combination of progress, a population living longer and longer, and extraordinary advances in medical science and technology, coupled with the need for rigorous discipline in public finances and with ever-increasing public expectations of what healthcare should deliver. All this taken together means that the NHS faces complex and difficult decisions in every area of its work. This Government in their previous incarnation between 2010 and 2015 frequently said that their approach to tackling these challenges was based on the principle of doing more for less.

It is clear that innovation has a critical role to play. In 2011 an important report from the Prime Minister’s Council for Science and Technology said that,

“success in delivering the government’s aspirations for healthcare … will depend on a fundamental cultural change within the NHS,

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supporting innovation in ways that increase health benefits while driving out costs across the system”.

I have asked for this debate today to highlight how in one particular case the Government and NHS England are signally failing to do this. That failure is causing unnecessary suffering and wasting taxpayers’ money, and it highlights what seem to be systemic problems with NHS England. I hope in his maiden speech that the Minister will be able to commit to some positive ways forward in addressing this failure.

Giant cell arteritis is a form of vasculitis, an inflammatory disease of blood vessels most commonly of the arteries in the head. It is, in effect, a stroke in the eye. If it is diagnosed in time it can be easily and cheaply treated with a course of steroids. Untreated, it leads to blindness in 25% of cases. It has been estimated that around 3,000 patients every year go blind as a result of giant cell arteritis—3,000 people losing their sight needlessly because doctors failed to diagnose their condition in time and provide sufficiently rapid treatment.

Why are thousands of these avoidable tragedies happening every year? It is partly because the symptoms are everyday. There are headaches associated with scalp pain, pain in the jaw or tongue, and it is also common to see low-grade fever, loss of appetite, depression and tiredness. Once symptoms present, an early temporal artery biopsy or ultrasound can confirm a diagnosis and enable urgent treatment to start to prevent blindness. However, far too often GPs miss the symptoms, because this is often an affliction of older people and the symptoms are too commonly categorised as merely the inevitable aches and pains of ageing.

For four years I have sought an estimate from the Department of Health of the cost of such unnecessary loss of sight, and as far as I am aware it still has not produced one. Maybe the Minister will surprise me today. My rough calculations—very rough—suggest that it could be around £1 billion over the lifetime of this Parliament. That is based on the fact that the average annual costs to the Exchequer of blindness for an individual exceed £25,000 a year, so the costs of those 3,000 people going blind every year unnecessarily run to £75 million a year. Of course, this cost accumulates year on year, so over five years the total costs of such unnecessary blindness could come to between £1 billion and £1.1 billion. When that is offset against the costs of the steroids, that still leaves a net cost to the taxpayer of around £1 billion.

However, that is just a calculation of the financial costs. It takes no account of the human costs: the incalculable misery of those losing their sight, mostly pensioners, already at the most vulnerable stage of their adult lives. It does not mean the loss of vision alone, although that is tragic enough. It increases mortality and the risk of cardiovascular complications, such as heart attacks and strokes, and of aneurysms. It also means all too often the loss of independence, with elderly people who had been able to live in their own homes now being forced to go into residential care.

This is not inevitable. There are significant differentiating characteristics about the symptoms, so giant cell arteritis ought to be easy to diagnose as long as GPs are sufficiently sensitised. Headaches are common, but sudden onset headaches and headaches over the

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temples, for example, are less common. Those categories of headache are key indicators of giant cell arteritis. For example, jaw and tongue pain is a red flag warning.

Dedicated clinicians and support groups have been working tirelessly to reduce the suffering from this avoidable loss of sight by raising awareness among clinicians. The British Society for Rheumatology, British Health Professionals in Rheumatology and the Royal College of Physicians produced guidelines for the management of this complaint five years ago, but the persistence of problems with diagnosis and appropriate treatment suggests that these guidelines are not having the desired effect.

Recently, a remarkable clinician, Professor Dasgupta, has pioneered in Southend a cheap and cost-effective fast-track pathway for diagnosis and treatment. The results of this pilot have been validated by the Department of Health and they show a dramatic reduction in the numbers suffering sight loss from this condition. Rolled out nationally, it would save thousands of people from losing their sight needlessly, it would spare them and their families misery and suffering, and it would save the taxpayer around £1 billion over the lifetime of this Parliament.

In January last year, Sir Bruce Keogh, the medical director of NHS England, wrote to me saying that this fast-track pathway,

“represents a new way of doing things which is better and costs no more. We must learn from such innovative examples”,

and he suggested a meeting, saying that it should,

“seek to determine how to disseminate this good practice effectively. It is by finding ways of smoothly industrialising these new ways of doing things that we will improve quality in a way that is cost effective”.

At this point it seemed that NHS England was providing a model for innovation in healthcare. Sadly, it has not turned out to be quite like that. That meeting was held in April last year, and 20 minutes into it one of the patients’ representatives, an experienced and distinguished journalist, passed me a note that read simply, “We’ve got a problem”—and indeed we had. The NHS officials at the meeting clearly saw the smooth industrialisation and effective dissemination of the fast-track pathway as a very low priority. In the end, as a compromise it was agreed not that there should be a national rollout industrialising the fast-track pathway but that milestones towards it should be agreed by last summer. That never happened. When I tried to find out why, I was told it had never been agreed, even though I and the three other people present at the meeting who were not NHS officials are all clear that it was.

Instead of finding a way to industrialise this new way of doing things, as Sir Bruce Keogh said he wanted to do, NHS England and the Government seem to be relying on three alternative approaches, none of which represents anything like an adequate response. First, there are the guidelines, which are clearly not having a significant impact on the problem. Secondly, NHS England has been developing proposals to establish local rheumatology networks. On 18 March this year, Sir Bruce Keogh wrote to me, saying that,

“discussions on the development of these networks have started in a number of areas”.

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In the 17 months since Sir Bruce told me that he wanted,

“to disseminate this good practice effectively”,

all that has happened is that discussions have started on localised rollouts. In that time a national industrialisation of this fast-track pathway could have prevented more than 2,000 people losing their sight. Finally, NHS England has invited Professor Dasgupta to contribute to the NHS innovation exchange portal. I wonder how much greater an impact NHS England thinks that portal will have over and above the existing guidelines—not very much, I would guess.

Why is more not being done? Ministers have said that the Health and Social Care Act 2012 means that this is now entirely a matter for NHS England. NHS England has produced two excuses. The first is that the Health and Social Care Act prevents it taking any action to ensure a national take-up of the fast-track pathway. It is not clear to me why this is. Admittedly the Act is extremely complex and impenetrable. Part 1 on its own runs to 110 pages. I have asked Sir Bruce Keogh to tell me which part of the Act he is relying on to make this assertion, but I have not yet had a reply.

However, the NHS England website pages on commissioning seem to suggest that it could do more. It says that,

“for rare disorders, services need to be considered and secured nationally”.

It does not say what is meant by “rare”, but NHS England always cites research showing that the incidence of giant cell arteritis is 20 per 100,000 people, which sounds rare to me. It seems that, on its website at least, NHS England concedes that it could be doing a lot more than it is telling me it can. In any event, if it turns out that the Health and Social Care Act does prevent NHS England taking the kind of action Sir Bruce Keogh said he wanted to see, there is clearly something wrong with that Act, and the Government should seek the first available legislative opportunity to amend it accordingly. In these circumstances, I hope the Minister might be able to commit to doing that if it proves necessary.

For the second excuse, and I am winding up now, I will quote Sir Bruce Keogh again. He said:

“Changing clinical pathways and processes require dedicated resource. Given the scale and complexity of the challenges facing the NHS, clinical and management resource has to be prioritised. Not everything can be done everywhere at once”.

As a generic statement, that sounds reasonable enough. Who could disagree with it? But it fails to explain why the fast-track pathway is such a low priority when it could rapidly save resources that could then be directed elsewhere. Sir Bruce’s remarks about industrialisation last year suggested that it would be given a higher priority, precisely for that reason. Can the Minister explain what has changed? Crucially, that generic statement fails to explain why the avoidable loss of sight appears to be given such a low priority by NHS England. Again, I would be grateful if the Minister could shed any light on why that is so.

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This case history suggests that NHS England is afflicted by a bureaucratic sclerosis that prevents it innovating in the way that the NHS so desperately needs. Moreover, it is clearly being hamstrung by the Health and Social Care Act either because there are real constraints on it, which hinder the effective dissemination of innovation, or because the legislation is so flawed that it is impossible to understand and is being used as an excuse for that bureaucratic sclerosis.

I hope that the Minister will use the occasion of his maiden speech to agree to take some action to sort out this profoundly unsatisfactory situation and to ensure the delivery of what Sir Bruce Keogh pledged in January 2014: to disseminate the good practice of this fast-track pathway effectively, and to find ways smoothly to industrialise it. Perhaps a good first step would be for the Minister, together with Sir Bruce Keogh, to agree to meet me and clinicians’ and patients’ representatives to discuss how best we can make progress. I hope that he will agree to do so, and I look forward to his response.

5.21 pm

Baroness Walmsley (LD): My Lords, I, too, welcome the Minister to his first debate. I also thank the noble Lord, Lord Wills, for using this debate to raise such an important issue. I, too, want to ask about fast-tracks although most of my remarks will be of a somewhat more general nature than those of the noble Lord.

The overriding purpose of innovation must be the better care and treatment of patients. Financial considerations are of course important but when patients’ lives are at risk, speed is of the essence, so we must do everything in our power to get proven new treatments and practices to patients without delay. A primary focus of innovative practice in the past two years has been the interface between health and social care. The devolution of new responsibilities to local authorities has the potential to let many flowers bloom and stimulate a lot of new thinking. However, local authorities, suffering deep cuts in their budgets and without ring-fencing of their adult social care and public health budgets, have found it very challenging to respond to their new powers. “No change” has not been an option. Indeed, in many areas, councillors and officials have felt that wholesale change is the only answer to providing integrated services to their ageing communities in a sustainable way.

A very good example of how this has been done is the Greater Manchester Integrated Care Programme. The 10 local authorities involved suffer some of the worst health outcomes and inequalities in the UK. The number of over-85s is forecast to rise by more than 28% in the next 20 years, while suboptimal management of these patients is currently placing significant strain on acute hospital services. As a result, older people in the area have high rates of emergency admission to hospital, of non-elective bed days and of readmission. What a challenge this is. By setting up three common integrated programmes with locally agreed variations that focus on user experience, health and well-being outcomes, productivity and multidisciplinary working, and with a strong programme of liaison and oversight, the 10 authorities have made real improvements in outcomes and reduced costs. Digital technology has

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been a key element in overcoming the barriers to integration. That was a quick skim through one very complex response to the Health and Social Care Act 2012. It is only one example of the innovation which councils all over the country are leading.

Turning to new drugs and equipment, as I understand it, the main control over whether these are approved for use in the NHS, and can therefore be commissioned by CCGs, is the NHS Business Services Authority. Some manufacturers are concerned that the approval process can take up to two years. When all the evidence for efficacy and cost effectiveness is available, this can surely be speeded up. Can the Minister say whether the Government are in favour of a fast-track procedure for drugs and equipment where all the evidence is available that would allow new ideas to be brought to the patient sooner? I can understand things taking longer if further evidence is needed, but some companies are in a position to bring all the evidence to the table. Such applications should be able to go through or be rejected very quickly if the figures do not stack up. Have the academic health science networks succeeded in their objective of ensuring rapid evaluation and early adoption of innovations?

Even when a piece of equipment has been NICE-approved, it can take far too long to reach all the patients who could benefit from it. For example, the latest innovation in diabetes treatment to be approved is the insulin pump. This has been available for four years and is suitable, according to NICE, for 12% of adult diabetics and 33% of children. However, distribution has reached only 4% of the patients who would benefit from it, far behind other European countries. This is not encouraging for other companies which are currently working on even more innovations to make the lives of thousands of diabetics better and safer.

Of course, it is not only drugs and equipment that must be considered. New practices and procedures at trust level and in primary care can also bring benefits to patients, raise standards and save the NHS money—standards being the key to a good health service. Very often even the low-hanging fruit is not plucked. I refer in particular to hospital infection control. There have been many examples of cases where better implementation of simple hygiene procedures can make an enormous difference in hospital-acquired infection levels. Yes, there are clever new things such as using bactericidal services and UV light cleaning equipment, a US invention being trialled in two hospitals over here. These have their place, but often much simpler solutions are overlooked. For example, I have recently been treated in two hospitals, one in England and one in Wales. The English one swabs patients for MRSA during their pre-operative assessment; the Welsh one does not. It is obvious which one has the higher rate of MRSA. This practice was recommended by the Science and Technology Committee of your Lordships’ House in 2003 when I was a member, in its report called Fighting Infection on the control of infectious diseases. It might have been a new idea then but it is not new any more and it is still not being used universally. It is a simple, cost-effective procedure and I am amazed that it is not being carried out in every hospital. So good care is not just about innovation, important though it is.

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I believe that more use can be made of the simple things that we all use, such as the phone. Everybody has a phone—indeed, 4 billion people in the world use a mobile phone, whereas only 3 billion use a toothbrush. In Durham and Darlington, dieticians won an award from Health Service Journal for using telephony to improve the monitoring of patients with nutritional problems. Formerly, they could only see about six patients a day, but with this system, an automated phone call regularly goes to a patient who is self-administering prescribed nutritional supplements. They are asked to answer certain questions by pressing buttons on the phone. Clinicians receive an email alert if the information input is outside of predetermined parameters, or if they have failed to respond to the call. They can then check on the patient directly. This is a scheme well deserving of its award. This is a very simple mechanism but it improves productivity; patients love it and feel more confident in their treatment.

How many other uses could telephony be put to? We are lagging behind countries that we consider to be less developed than ours. Some years ago I went to India to look at some aspects of their health service. They were way ahead of us in what I would call distance health. In other words, because of the extreme rural nature of much of the country, and the fact that most medical expertise is located in the cities, they had set up village health centres with videolinks to hospitals. Doctors could be face to face with a patient many miles away, question him, get answers and even see the problem. The village health workers also helped with the consultation and could administer simple treatments under the instruction of the doctor.

We may not be as rural or poor as India, but we do have many patients who cannot get to their GP easily or get a timely appointment. It occurred to me at the time, years ago, that we could increase the productivity of our GPs if we had a system like that. The now discontinued NHS Direct was not popular with patients because the people at the end of the phone were not sufficiently well qualified, and too many people were just directed to their nearest A&E. Its replacement, NHS 111, has yet to prove itself. If it is co-ordinated properly with GPs’ practices and other services, as it is intended, it could be a great success, so I wonder whether the Minister can tell us how its success is being monitored and what role it will play in the Government’s ambition to make the NHS a 24/7 service. Finally, I look forward to the Minister’s maiden speech and to hearing some of the answers to my questions.

5.31 pm

Lord Turnberg (Lab): My Lords, I am very grateful to my noble friend Lord Wills for introducing this debate in his usual eloquent and powerful way and for emphasising the importance of giant cell arteritis, which is such a devastating condition, but potentially treatable if it is diagnosed early enough. It is a particular pleasure to know that the noble Lord, Lord Prior, is at the Dispatch Box for the first time and giving his maiden speech. I know that he is extremely knowledgeable about the NHS, so I am sure he will have no trouble at all in answering all our questions.

The topic of innovation is very close to my heart. How could it not be, as someone who spent his life—rather

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a long time ago—as an academic physician and constantly tried to innovate in my practice, and who is now scientific adviser to the Association of Medical Research Charities, which produced that very far-sighted document a couple of years ago,

Our Vision for Research in the NHS

? In that vision, we wanted to see, first, every patient being offered the opportunity to be involved in research, for example in clinical trials. It is clear that most patients want to be involved. Perhaps they know that there is good evidence that patients who are in trials do better than those who are not. Secondly, we wanted research to be embedded in the NHS and every healthcare worker—doctors, nurses and others—to know that they can contribute to research. They should be motivated to engage in understanding the benefits of research for their patients. Thirdly, we wanted the NHS itself—the CCGs and trusts—to ensure that there is a research culture in its organisations.

How far have we come since then? Of course, some things have got better, but I fear that others have become worse. On the positive side, we have a very strong basic science sector. We are very good in the UK at innovation. We punch way above our weight in our research outputs internationally—citation indices, Nobel prizes and the like. We are being overtaken by China and Singapore, and India is coming up fast on the outside, but we are still pretty good.

Also on the positive side is the investment that the Department of Health is putting in through NIHR, under Sally Davies’s direction. The academic health science networks and centres are doing very important work in encouraging clinical research around the country—long may that continue. My first question for the Minister is about what plans the Government have for the longer-term funding of AHSNs. The last Government were rather cagey about that. Then, again on the positive side, we have the Health Research Authority, under Jonathan Montgomery’s chairmanship, which is doing good things in easing the regulatory burden on clinical researchers. There is more rapid approval through ethics committees and through local trust research committees.

However, of particular importance and value has been the rapid licensing of new drugs by the European Medicines Agency and the MHRA. That will prove invaluable in getting drugs through regulation and into practice. Yet too many hurdles still interfere with the uptake of innovations in clinical practice, and there are too many delays before patients begin to gain the benefits of innovation. Some of these were brought out in the Lords Select Committee report on regenerative medicine. I had the privilege of sitting on that committee a year or so ago. The report suggested that, first, funding for research was problematic. We found that although many original discoveries were made in the UK, lack of research funding and in particular venture capital investment prevented us from keeping ahead of the game. Researchers in other countries capitalised on our inventions—a very familiar story. We now hear that funding for universities might be cut back in the Chancellor’s proposed new austerity measures. What assessment have the Government made of the cuts to universities on research outputs, particularly medical research outputs?

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Then there is the problem of how we can encourage doctors to engage in research at a time when clinical pressures on them increase all the time. That is certainly true of hospital doctors but even truer of GPs. Here, there is much greater resistance to engage in or contribute to research activities—clinical trials and the like. When I speak to GPs it is very clear why: they are simply rushed off their feet and overwhelmed by their clinical and administrative load. They just do not have the time. Are the Government doing anything to ease that burden? How can they even contemplate seven-day working and at the same time think about research?

The workload of GPs has another effect too. It impinges on their willingness to take up novel treatments as they come along. I am afraid that a natural antipathy to accepting something new is made worse when they do not have the time to even look at the evidence. If we are to achieve our ambitions for research in the NHS we need GPs to be much more involved. Do the Government have any ideas about getting round this serious difficulty?

Then there is the problem of access by researchers to data about patients. Clinical and other data are vital to the research endeavour and, indeed, for good clinical care. However, the fiasco last year put that back far too far. What is being done now to untangle that mess? When will the planned pilot studies take place? What care is being taken to reassure the public and patients that their confidentiality will be protected, while at the same time explaining how vitally important it is that their data are made accessible to legitimate researchers?

Finally, we have the knotty problem of approval for funding of new treatments, particularly those for patients with cancers and rare diseases. These are often very expensive and must go through specialised NICE or NHS England assessment processes. There is the rub, because these are extremely slow and tortuous. Even though drugs may get a licence quickly through the new systems offered by the EMA and MHRA, they must then jump through the hoop of NICE for funding in the NHS. However, NICE can deal with only three of these requests a year and usually takes well over a year to approve any one of them. It is even worse for those drugs that it cannot take on. It can deal with only three; any more it must pass on to be examined by NHS England. Here, they must be considered by no less than seven serial committees—that is, seven committees in series. If you wanted to invent a system to avoid making a decision, then this is it. What can be done in NICE and in particular in NHS England to reduce this bureaucratic nightmare, set up to approve funding of these new treatments? Is there anything that can be done to rationalise the number of committees employed in NHS England that are needed to do this work?

It has been repeatedly stated by Ministers, including the Chancellor and the Prime Minister, that the Government give high priority to research and, in particular, to medical research. Indeed, the Health and Social Care Act made it mandatory for CCGs and trusts to include clinical research in their strategies, but it is equally clear that these ideals are being frustrated. There are other reasons, but funding for the service is going to be important—funding for GPs;

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funding for expensive drugs; and funding simply for the service—which makes it even harder for it to engage in the research agenda. But it is not just a question of funding, as I have said, and I look forward with interest to the response from the noble Lord, Lord Prior, and wish him well in facing the difficult times ahead.

5.40 pm

Lord Sharkey (LD): My Lords, I, too, congratulate the noble Lord, Lord Wills, on securing this debate and on his compelling opening speech. Like him and all other speakers, I very much look forward to the maiden speech of the noble Lord, Lord Prior, in a few moments. I declare an interest as chair of the Association of Medical Research Charities.

In the context of the NHS, “innovation” has a wide range of applications. It covers, of course, innovations in care and treatment, but also medical research, which is where I shall focus most of my remarks this afternoon. A great many things have changed in the NHS in the last 15 years, as other noble Lords have said. Very significant advances have been made, and many of them are the fruits of the UK’s acknowledged excellence in medical research. We recognised this explicitly in our debates on the then Health and Social Care Bill in 2012, which imposed for a first time an explicit duty on the Secretary of State, NHS England and CCGs to,

“promote research on matters relevant to the health service, and the use in the health service of evidence obtained from research”.

It is generally accepted that the UK’s leading role in medical research is of enormous value to patients and the country. That leading role depends to a very large extent on the active participation and leadership of the NHS itself. The Government recognise that, and so does the NHS. In October last year, the NHS published its Five Year Forward View; this document devoted four pages to innovation, usefully not only setting out aspirations but detailing some of the steps needed to achieve those aspirations. The document explicitly confirmed continued support for the NIHR. That is a very good thing.

The NIHR is, with the AMRC and the medical research charities, one of the key funders of medical research, which in the NHS has undergone a kind of renaissance since the advent of the NIHR. It is all the more impressive when you realise that the NIHR’s budget is less than 1% of the overall NHS budget. That is a much smaller percentage commitment to R&D than is the norm for other knowledge-based organisations. There is a real business case, as I said before, for increasing the NIHR’s budget, apart from compensating for inflation. For every £1 of government and charity spend on health research there is a return of between 37p and 40p every year, in perpetuity. This is obviously a vital area. Could the Minister use his very best efforts to persuade his colleagues that a significant part of the promised extra £8 billion should find its way into the NIHR budget? While I am talking about money, when are we likely to see the guidance on excess treatment costs that was promised for before Christmas?

Despite some progress and good intentions, the research landscape in the NHS is not yet entirely encouraging. Around three weeks ago, Cancer Research

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UK published a report that it had commissioned entitled

Every Patient a Research Patient?


The organisation stole or borrowed the title from the Prime Minister’s own stated aspiration that every patient will be a research patient. However, this report says that it has,

“found mounting and pressing concern”,

about research in the NHS. It identified a number of constraints, including,

“the ability of people to commit time to research, in the face of mounting service pressures … the availability of key skills and experience within the workforce”,

and of course generalised financial pressures.

The Chief Medical Officer, Professor Dame Sally Davies, commented on the report. She said:

“There is considerably more to do to improve the commitment, culture, capacity and capability of the NHS to promote, support and conduct research”.

Are there mechanisms in place to measure progress on the lines set out by the Chief Medical Officer? How will we know when we are making progress?

The final area I shall touch on briefly is data. Patient data, actual and potential, are an almost unimaginably important resource. Proper collection, dissemination and analysis of data will allow the next great leap forward in medical science. The NHS explicitly recognises this and has set up the National Information Board to lead the effort. We need real drive and leadership in this area. As my colleague the noble Lord, Lord Turnberg, said, the debacle over has made progress very much more difficult. The Wellcome Trust noted at a recent hearing of the Health Select Committee on patient data that some researchers funded by medical research charities are experiencing significant difficulties and delays when trying to access data from the Health and Social Care Information Centre. Often these delays are more than 12 months. In some cases, researchers have not been allowed to access data at all, even when patient consent has been given and the data anonymised. I am sure the Minister is well aware that the situation is as difficult as it is urgent. Better use of patient data can lead to significantly better outcomes for those patients. I know the department is aware of this and all the other issues I have mentioned and is aware of the need for an overarching NHS research strategy and is working on that. Finally for the Minister’s list of questions, when does he expect to be able to publish a draft of this research strategy tying all these issues together?

5.47 pm

Lord Hunt of Kings Heath (Lab): My Lords, I thank my noble friend Lord Wills for opening this debate in an excellent way. I am going to talk a little bit about NHS procurement so I should declare an interest as president of both GS1 and the HCSA.

It is my great privilege to anticipate the Minister’s maiden speech, congratulate him on it and welcome him to your Lordships’ House. He is a distinguished businessman, politician and, latterly, was chairman of the fantastic Norfolk and Norwich University Hospital and the Care Quality Commission. I think it is fair to say that he inherited the CQC in a somewhat fragile state. It is to his great credit that he and chief executive David Behan have stabilised the position. I do not take the Roy Lilley approach to the CQC. Of course there will always be issues about its methodology and the

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way it practises regulation, but I have no doubt that under the leadership of the noble Lord, Lord Prior, the CQC was definitely going in the right direction, and we owe him a great debt for that. I should also say that I particularly appreciated the fact that he and his chief executive made themselves available frequently to politicians, and that approachability is also very much respected and appreciated. I am sure that that will also characterise his frequent appearances in your Lordships’ House in our many health debates.

This is a very important question. We have the great paradox that this country has, as my noble friend Lord Turnberg suggested, a hugely impressive life science base and much-valued R&D. Even today, with all the pressures on UK pharma, there are still many drugs in the top 100 globally which have been developed in this country, yet we have a real problem in adoption by the National Health Service. My fear is always that unless we can dramatically change the approach of the NHS, we will put at risk future global investment in this country.

I shall start by referring to the points raised by my noble friend in opening the debate, on giant-cell arteritis. I have come across similar problems in another disease area—we have had debates on them in your Lordships’ House: one on PAWS GIST, and another on neurofibromatosis NF-1—and my experience is exactly the same as my noble friend’s. The problem is where there are small numbers of patient groups and effectively no national strategy. CCGs simply do not have the capacity, capability or desire to do anything about it at a local level, and GPs are inundated with guidance on one thing or another, making it very unfair to attack GPs on this matter. It is clear that we lack a strategy within NHS England for dealing with these patient groups—these disease areas—where they involve a small number of people. Like my noble friend, I have had a number of meetings with officials at NHS England who are clearly completely overwhelmed by the task in hand. There is no decision-making structure that I can see where you can ask, “Who in NHS England is responsible for giant-cell arteritis?”. It is quite clear that no one has responsibility. They may well have a clinical director who has some vague oversight, but that is as good as it gets.

What has happened to the clinical directors is disgraceful. Under the Labour Government they were employed in the department, with direct access to Ministers. Now they are part-timers in NHS England, with no support and no access to the top of the office, and are left in an impossible position. I hope the noble Lord will sort that out. I also hope he will encourage NHS England to take a much more progressive view on innovation. I welcome a number of the Government’s initiatives, such as AHSNs and the current accelerated access review. Those are strongly welcomed. I know that Mr George Freeman, in his department, shares the concern that we have about the need for adoption in the NHS. However, someone has to sort NHS England out.

We have already heard about the problem of drugs that do not go through the NICE cycle. Basically, NHS England has set up a rationing tool to delay their introduction; that is why there are so many committees—it is simply a rationing tool. The gross example of this

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relates to the new PPRS agreement on drugs. In that area I congratulate the Government on negotiating an agreement whereby over a five-year period, if drug costs go up a certain level, a rebate is paid out to government. Every quarter a rebate is paid back. I think we have now gone through 18 months, so another rebate is due shortly. The money coming back could have been used to finance new and innovative medicines, but no—it is simply being taken and put into general allocations. There was an opportunity there for the pharmaceutical industry to finance the introduction of innovative new drugs, because we know what the drug costs will be over a five-year period. However, my understanding is that because NHS England was not part of those negotiations, and despite what it says in the

NHS Five Year Forward View

and Simon Stevens’ commitment to innovation, the practice of NHS England is in fact to stamp on innovation, because the only thing it is interested in is containing costs, and it sees that at a very crude level.

As the noble Lord will know, the 2012 Act has effectively been disowned by the Secretary of State. Every announcement that has been made in the last few weeks suggests that we are going back to good old command and control, and thank goodness for that. The Minister needs to take a grip on this, otherwise we will have another debate on innovation every year. Frankly, it is clear that the NHS is not going to adopt proven innovative new developments, techniques and medicines.

My final point concerns the report of my noble friend Lord Carter, which was published today. I am very grateful to my noble friend for the work that he has done, and I absolutely agree with him when he says that a better approach to purchasing will bring good returns. Again, it has been abundantly clear that we need a central, directional approach to procurement if we are to get those savings. The question that I want to put to the Minister relates to a new approach to purchasing, where essentially the Department of Health or NHS England, on behalf of the NHS, will commit itself to volume purchasing in order to get the kinds of savings that we want. Can he ensure that in the discussions that he takes forward it will be clear to the people doing the negotiations that part of the outcome will be a willingness to invest in innovation? I think that there is the potential for very good, longer-term agreements with industry in which the NHS, because it can commit to volumes, can achieve considerable savings. However, the deal has to be that the NHS adopts new, innovative products and medicines, rather than a penny-pinching approach, which in the end will be cost effective.

I know that some of those matters come within the responsibilities of the noble Lord, Lord Prior. He is warmly welcomed to this House and to his position, and we very much look forward to hearing his maiden speech.

5.56 pm

The Parliamentary Under-Secretary of State, Department of Health (Lord Prior of Brampton) (Con) (Maiden Speech): My Lords, first, I congratulate the noble Lord, Lord Wills, on introducing this debate today. As I would have expected, we have heard five powerful speeches and I stand here in some awe. This is my

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maiden speech and I want to say what a huge privilege and honour it is for me to join your Lordships’ House. I still have to pinch myself every time I come here to check that it is really true.

It goes without saying that I wish that my father were here today and not taking a leave of absence. I would have liked the chance at least once in my life to have addressed him as “my noble kinsman”—more respectful, if more other-worldly, than other epithets that I may have used to describe him in the past. He was elected to the other place in 1959 and introduced to this House in 1987. The spirit of “one nation” that inspired his politics is, I am glad to say, alive and well in today’s Conservative Party. What inspired him back in 1959 still inspires me today.

I follow in the footsteps of my noble friend Lord Howe, who is in the Chamber. He held the office that I now have with huge distinction in both government and opposition for some 18 years. Over that time, he deservedly won a reputation, on all sides of the House, for charm, humour, intelligence, integrity, good sense and fair play.

Noble Lords: Hear, hear!

Lord Prior of Brampton: He embodies all that is best about this House and he will be a very hard act for me to follow, although I shall do my best.

I also pay tribute to the former Minister for Care Services in the last Government, Norman Lamb. If not for him, I might well have still been in another place representing the constituency of North Norfolk. I congratulate him especially on his work on raising awareness of mental health issues and improving the standing of mental health services in this country. Both our families have been touched in different ways by the tragedy and tragic consequences of mental illness, and I imagine that many others in this House will have been similarly touched.

I am grateful to the noble Lord, Lord Wills, for raising the important issue of innovation in the National Health Service. If he will give me a little latitude, I will come back to him later on the points that he raised. We have already spoken outside the House about his particular concern, but I will address it towards the end of my speech.

Before I respond to the observations of the noble Lord, Lord Hunt, I would like to say how much I look forward to working with him. We have worked together over the last two years. He has a deep knowledge of and commitment to the National Health Service, and I know that there is much more that unites us than divides us. It is a shame that, sometimes, the adversarial nature of politics intrudes so deeply into health and social care. I endorse his words about his noble friend, Lord Carter, who has produced an extremely valuable report that will help the National Health Service to drive costs out of the way that we deliver care in acute hospitals, which can then be used more for innovation, new drugs and the like.

The noble Lord, Lord Hunt, was a Minister back in 2000, when the then Secretary of State for Health, Alan Milburn, described the NHS as a,

“1940s system operating in a twenty first century world”.

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I think the noble Lord will agree that the project of transforming the system so that it is fit for today’s world is still far from complete.

The NHS Five Year Forward View is, I believe, a vision for the transformation of the NHS that all of us in this House can support. It is a vision for the NHS created not by the Prime Minister or the Secretary of State for Health—who is sitting to my left—or by any politician. It is a vision of the NHS by the NHS, for patients and taxpayers alike. It describes a future built on innovative new models of care and integrated models of care, which the noble Baroness, Lady Walmsley, mentioned in her speech, to meet the needs of today’s population.

My time as chairman of the Care Quality Commission taught me a great deal, but especially that great organisations require great leadership and very high levels of staff engagement. Staff engagement is probably the best predictor of care quality and overall performance of hospitals and, indeed, of primary care and social care. Doctors, nurses and other healthcare professionals are not primarily motivated by targets, financial incentives or contracts; they are driven overwhelmingly by their vocation. I much appreciated the words of a former president of the Royal College of Physicians, the noble Lord, Lord Turnberg, who understands that probably more than I or many others in the House do. We must never forget that it is their vocation that drives healthcare professionals.

I want particularly to mention how delighted I am that NHS England has appointed Yvonne Coghill to champion the cause of race equality. It is sad and wrong that so many people from BME backgrounds do not have the same opportunities as others in the NHS. This is not just morally wrong but has a direct impact on patient care.

It is important to remember that innovation, the subject of today’s debate, needs the full engagement and alignment of clinicians, staff and managers alike if it is to deliver the change that we want and need. Innovation in medicine has prompted enormous advances in healthcare. From the discovery of penicillin, through the pioneering of major organ transplantation and keyhole surgery, to increasingly targeted modern cancer treatments and, as I found out last week, the development of 3D-printed hip replacements, there is much to be proud of and indeed thankful for.

The noble Baroness, Lady Walmsley, mentioned infection control. The noble Baroness is right: it is not just about the high tech; sometimes it is about just washing your hands. The extraordinary improvements that we have seen in the reduction of MRSA and C. difficile in our hospitals—although there is further to go—is testament to that.

As the noble Lord, Lord Giddens, rightly identified in last week’s Queen’s Speech debate, we now stand at the brink of a new technological revolution in healthcare, with the emergence of advanced digital technologies, greater connectivity and the widespread use of smartphones opening up unprecedented opportunities for treatment and prevention. In addition to the wide array of wearable technologies, there are no fewer than 100,000 health apps, allowing people to take more control over their health and well-being. I think

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that self-care will be a major addition to the armoury of health prevention as we go forward.

We are determined to seize these opportunities and have established the National Information Board to drive the digital transformation of the health and care system. I share the concerns expressed by noble Lords in this House that restoring public confidence and trust in is an imperative and is very important.

Noble Lords will know that in its Five Year Forward View, NHS England and all the ALBs have committed to driving improvements in health through developing, testing and spreading innovation across the health system. This aspiration is evident in the creation of the Vanguard programme. Noble Lords will be aware that in January the NHS invited organisations to apply to become vanguard sites for the new care models programme—a highly innovative programme. More than 260 organisations expressed an interest in developing such a model, with the aim of transforming how care is delivered locally. In deciding which models of care to support, NHS England and ourselves will be guided by the view of a previous Prime Minister, recently repeated by Liz Kendall MP, that “we will back what works”.

Let me provide a few further examples of where we are making progress. First, the test beds initiative, launched in March this year, will produce real-world sites for evaluating innovations that integrate new technologies and other novel approaches that offer the prospect of better care at lower cost. Secondly, noble Lords will be aware that England was the first country in the world to establish a system of academic health science networks, supporting local economies to improve local health outcomes, and maximising the NHS’s contribution to economic growth by enabling and catalysing change through collaboration. This builds on the success of our six world-leading academic health science centres, designated following review by international experts. Having met with the Chief Medical Officer, Dame Sally Davies, this afternoon, anyone in this House who believes that research will not have a high priority for this Government will have to tangle with Dame Sally. It is remarkable for a country the size of England to have six world-class institutions in this field.

Thirdly, I am proud that we are leading the world in whole-genome sequencing. NHS England is a key partner in the landmark 100,000 Genomes project, working to sequence 100,000 genomes of NHS patients with cancer or rare diseases. The 11 genomics medicine centres across the country are playing a vital role in identifying patients with rare diseases and cancers with a view to providing more personalised and targeted

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treatment. It will not be long before we are the first mainstream health service in the world to offer genomic medicine as part of routine care for patients.

Last but not least, to pick up the concern expressed by the noble Lord, Lord Turnberg, the accelerated access review was launched by the Minister for Life Sciences in March and is independently chaired by Sir Hugh Taylor. It will make recommendations later in the year on how we can speed up patients’ access to innovative medicines and medical technologies, taking time and cost out of the development pathways for new products. This will have wide benefits for innovators, for pharma companies, the NHS and, of course, for patients.

We must not, of course, become complacent. Health has always been a hotbed of innovation, and innovation has allowed the NHS to provide ever more advanced care to patients. But the wider world offers many examples of innovation in the way care is delivered from which we can take huge inspiration—whether it is Kaiser Permanente in California, Aravind in India, or the extraordinary work that is being done with data in Singapore and Australia. We must never fall into the trap of “not invented here”.

Finally, turning to the issue raised by the noble Lord, Lord Wills, concerning giant cell arteritis, I should add that this is not as specific as I thought and raises more general issues about NHS England than were raised by the noble Lord opposite. The Government recognise that early diagnosis and treatment of giant cell arteritis is extremely important to prevent sight loss. I was touched by the human concerns and the human impact of giant cell arteritis expressed by the noble Lord as well as the financial issues that he raised.

I have raised the issue with Sir Bruce Keogh, the national medical director of NHS England, who is happy to meet the noble Lord, along with the Minister for Life Sciences, George Freeman. But in view of the more generic issues that have been raised, and the fact that it is not just this specific matter, I would like to join the meeting—to discuss not only Professor Dasgupta’s work but the wider issues around commissioning treatments for these rare and specialised conditions. I hope that the meeting is productive.

I am conscious that I have not addressed all the questions today, but on this occasion I hope that your Lordships will forgive me as it was my maiden speech. I want to say how much I am looking forward to working with noble Lords on all sides of the House in the years to come.

House adjourned at 6.10 pm.