Anti-TNF Drugs

Debate between George Freeman and Anne Main

Wednesday 9th December 2015 Westminster Hall

[Oliver Dowden (Hertsmere) (Con)]

The Minister talks about need. In a similar vein to other Members, I would like to highlight the need of a constituent of mine—a young lady called Olivia, aged 15, who is totally reliant on self-funded anti-TNF treatments to retain her eyesight. She is very concerned that when she reaches adulthood, she may no longer have access to that, which is why her parents, also constituents, have created a charity called Olivia’s Vision. Again, I ask—

[Mrs Anne Main (in the Chair)]

Order. Interventions must be brief. I call the Minister.

[George Freeman]

My hon. Friend has eloquently raised his point. I am happy to look into that with him afterwards.

NHS England will consider individual funding requests for treatments not recommended by NICE to treat individuals whose clinician can demonstrate clinical exception. The NHS constitution states that patients have the right to expect local decisions on the funding of drugs and treatments

“to be made rationally following a proper consideration of the evidence.”

If an NHS commissioner decides not to fund a drug, it has a duty to explain that decision to the constituents of the hon. Member for Leeds North East and others.

I want to turn quickly to the hon. Gentleman’s specific questions and then deal with a couple of questions that really sit under this whole debate. Let me respond to his four questions. I completely agree that time is of the essence to anyone in danger of losing their eyesight and, yes, people should have the chance to have a family and we need to make sure that we are supporting patients in the appropriate way. We are working to speed up the process, so that effective medicines get to patients much more quickly, but we need to know that they work and to make sure that the benefits they bring to patients are commensurate with their cost to the NHS, which is why we have NICE, a world-leading expert in health economics.

I must clarify that NICE is not currently appraising either adalimumab or infliximab for uveitis. However, it is consulting stakeholders on a proposal to include adalimumab within the scope of the technology appraisal guidance that it is developing on its two other drugs for the treatment of uveitis. A final decision on referral will be taken once NICE has concluded that consultation. I am aware that evidence is emerging on the use of these drugs on the treatment of uveitis in adults. When the full evidence is available, both NICE and NHS England will be able to take that into account when considering whether anti-TNF treatments should be made routinely available on the NHS.

In the remaining moments, I want to touch on the underlying issues that this debate has helpfully flagged up. The pace of change in the biomedical space, the rate at which new drugs are being discovered and the power of genomics and informatics, giving us a new insight into diagnosis and treatment, is putting pressure on our traditional methods of assessing drugs. Traditionally, NICE has worked on a one-size-fits-all, health benefit, “yes or no”, quality-adjusted life-year basis. I have launched the accelerated access review partly to look at how we can better use the genomics and informatics in our health system and give NICE more freedoms to be able to fast-track treatments to the patients who we know will benefit.

That touches on the question of off-label use of drugs. When there is a proven benefit outside of an on-label indication, we need to be much better at getting that information to clinicians, so that they can prescribe drugs in an off-label indication more quickly. The burden of proof needs to be not only right, but appropriately set, so that where there is clear evidence, the system can respond more quickly.

The hon. Gentleman made an important point about the cost of benefits. The system at the moment is not great at measuring the full cost of a condition downstream, which is partly why we are putting such efforts into the digitalisation of the health service and into being able to measure the cost of treatment and a disease condition. When we have a benchmark of what the cost is to society after a diagnosis, we will have a much better benchmark for rewarding innovation.

I will happily deal with any other questions offline. We have had a very short amount of time, but I hope I have tackled the hon. Gentleman’s specific questions. I am grateful to him for raising the issue, and I hope I have given some signal as to where in the coming weeks and months we may be able to expect some helpful progress.

Question put and agreed to.

Consumer Rights Bill

Debate between George Freeman and Anne Main

Tuesday 28th January 2014 Commons Chamber

[George Freeman]

The hon. Lady makes an interesting point, some of which is dealt with in the Bill. It will be interesting to see whether it is picked up in Committee.

Consumers spend more than 59 million hours a year dealing with goods and services problems, which costs an estimated £3 billion a year to the British economy. The Bill is deregulatory by nature, which means that consumers and businesses will find it easier to resolve problems with faulty goods and substandard services, and, for the first time, corrupted digital downloads. I noted with great interest that the executive director of Which?, Richard Lloyd, has said that the Bill

“brings consumer law into the 21st century, extending rights into digital content for the first time, and making it easier for people to understand their rights and challenge bad practice.”

The House will agree that that is a welcome step.

I welcome the fact that underpinning the Bill is the principle of fairness and helping customers when things go wrong, as they sometimes do. The measures will provide a firm foundation for empowering consumers, which will benefit businesses that treat consumers fairly.

Many businesses provide their customers with enhanced rights, but the truth is that even the best businesses still spend significant time and resources—more than they should have to spend—understanding the law and training their staff to apply it. The Bill will benefit businesses by reducing many of the burdens they face because of complicated consumer law. I particularly welcome the competition affairs tribunal.

My support for the Bill is genuine, but I wanted to mention one or two aspects of it that reveal, within our society, a view of consumer rights that is, at times, rather too narrow and that does not embrace broadly enough a concept of true consumer and citizen empowerment on the scale we need to drive a sustainable recovery and to reform how we deliver public services and put this country back on its feet. There are three specific areas in which the challenge of unleashing citizen and consumer power are urgent.

First, some markets—banking, utilities and telecoms—are holding back our recovery. Secondly, I am struck that the consumer rights conversation is framed around consumables, point-of-purchase rights and commercial rights in the commercial market. Many of those concepts could and should apply equally in the public sector and public services. Thirdly, it is also important to have active and empowered consumers in supply chains to drive them. That subject may not entertain all hon. Members, but I know that the Secretary of State feels particularly strongly about it.

In the bigger markets—banking, utilities and telecoms —we inherited from the previous Government an extraordinary concentration of power. One or two institutions had a very unhealthy predominance in each of those key markets, which are vital to the proper functioning of a free market economy. What we need as we try to recover from that toxic legacy of debt and dysfunctional markets is an insurgency of empowered consumer citizens to drive a new paradigm of choice, and to demand and insist that that which is available in so many fields of public life is available in banking, utilities and telecoms.

In banking, why is it still so difficult for bank customers to take their accounts to different banks? I would like to see consumer power, and consumer frustration with some banks, driving much more insurgency and the creation of new banks. First Direct appeared nearly 20 years ago, which was a stunning moment for our generation, who had never seen an online bank. We tapped the mouse and wondered whether it could be trusted and whether it would work. It turns out that First Direct was a stunning new entrant that catalysed all sorts of reforms in banking market. Why not have more now? Our banking sector is dominated by too few big banks, which were propped up by a very unhealthy burst of crony capitalism under the previous Government and shored up in the crisis that that incubated. We need to release customers to drive that insurgency in banking.

I would argue that the same is true with some of the utilities. Following privatisation in the ’80s, we saw those markets consolidate under the previous Government. For 13 years, we did not see or hear very much about that. We have inherited, particularly in energy, a small number of big companies that now pass on substantial global commodity price rises to customers, who have all too little real choice and power to drive across the market. To a lesser extent, the same is true for telecoms and broadband. We still see a very powerful monopoly provider in BT. Of course, other providers are able to operate on the railway tracks, but I do not think that in the telecoms market, given the extraordinary empowering impact of the underlying core technology, we have seen a parallel opening up of consumer power. Going the final mile to get broadband into deep rural areas to drive a rural renaissance, in my constituency and in East Anglia more generally, will require us to support consumers through some sort of voucher mechanism—I welcome the steps the Government are taking on this—to be more empowered to choose satellite, digital or any one of the insurgent broadband providers appearing on the market.

On public services, as important as the measures in the Bill are and as important as this subject is, they are still framed, as is the wider public debate on consumer rights, within the notion of point-of-purchase and consumerist trade descriptions legislation. It is principally concerned with the rights of the consumer at the point at which they buy a consumable. However, the concepts, ideas and rights enshrined in this useful Bill could and should go further. In fact, a number of the reforms that the Government are rightly unlocking in other areas of government will demand that they do. For example, why can patients in the health service, parents in the education system, or even pupils—possibly not young pupils, but sixth-form pupils—not have greater choice, transparency and consumer rights in the public services they receive? I would argue that a sixth former in a failing school who is receiving a bad education has just as many rights as the consumer of faulty electronic goods at a supermarket checkout. We need to extend this principle more broadly across public services.

[Mrs Main]

My hon. Friend is making a powerful point. On education, many students are not aware of how little time they will have in lectures or interactive courses when they apply for degrees. Expanding transparency to what exactly students are purchasing when they take a course might be helpful.

[George Freeman]

My hon. Friend, as ever, makes an extremely interesting and shrewd observation. The truth at the heart of public services is that the taxpayers provide the money and the Government, as best they can, the service. In that loop, something is lost: a direct connection between the recipient of the public service and the point of payment. Most of the recipients of public services have, of course, already paid for them through their taxes, but the sacred moment of the empowerment of the consumer gets lost in a complex chain of public service delivery. She makes the point that we need to look across our public services at how we can restore that moment. I would like more parents and pupils in schools to feel that the choice they make—choosing which school to send their child to—is a choice that the system respects. I wholly welcome the reforms that the Secretary of State for Education is putting in place to that end.

I want to mention health care, in particular, as we are seeing an extraordinary change in modern health care. I do not think it is too profound or bold to claim that health care is going from something that traditionally, in the 20th century, was done to us by Governments when they decided we needed it, to being something that modern consumer health care citizens do for ourselves. We are seeing across the NHS much greater patient demand for information, transparency and choice. We are seeing click health care and modern patients wanting to be able to access information and be empowered. That is all to the good if we want a new generation of citizens empowered to understand what causes disease—how lifestyle, diet and even genomics affect one’s predisposition to disease. We want to empower consumer citizens to prevent disease. We will not do that without empowering them to make choices and receive information. That is why I have a ten-minute rule Bill on the very subject of releasing patient data to patients within the framework of acknowledging that it is their data—our data. By giving patients back their data, we empower them to use them better for public health care.

--- Later in debate ---

[George Freeman]

The hon. Gentleman pre-empts precisely the point I was about to make about balance in supply chains. The manufacturer at the end of the supply chain has a duty to understand, monitor, measure and take responsibility for the supply chain, but we also need to provide for consumers to exercise their rights and understand the supply chain.

I want to talk about the two areas I have most experience of: the Government’s industrial strategies for life sciences and agricultural technologies. The central thrust of the agri-tech and food strategy, which we launched last summer, is that corporate interests in reducing costs and dependence on agrochemicals, energy and labour are now very much aligned with consumer interests and demand for increasingly green food with low-carbon, low-plastics and low-water footprints. The challenge in global agriculture is how to measure those inputs and communicate to consumers clearly and simply at the point of purchase that the thing they are buying comes with a low-carbon and low-water footprint. A proper system for measuring that will also make Britain a leader in the technologies required to hit those targets. I pay tribute to my hon. Friend the Member for South Thanet (Laura Sandys), who has done a lot of work on resilience in supply chains and the importance of this agenda. I suspect we will get the benefit of her comments in a moment.

That agenda applies equally in the field of medicine. The challenge of discovering drugs for modern patient groups has seen the industry reinvent itself and move away from spending 15 years and $1 billion on developing a blockbuster drug that it can present to Governments as working for everybody. The more we know about disease, genomics and different patient groups, the more we know that different people get the same disease in different ways, and the challenge is to help the industry develop drugs around the patients whom we know will benefit. Then we can give the right drugs to the right people, instead of wasting drugs and having to set dosages at levels that make drugs ineffective in those for whom they work well in order to prevent side effects in those for whom they do not.

That agenda is driving a completely different way of discovering drugs—one where the NHS works with patients—and creating extraordinary opportunities for the UK to lead the world in providing targeted and ultimately personalised medicine, but it requires a different way of thinking about patient rights. We need to think of patients as having the right to be involved in NHS research; to access the best medicines available; and to access and use data, both personalised and anonymised, to support research. I understand that the Bill does not address that area of consumer rights, but the House will have to return to it in the coming years.

[Mrs Main]

On supply chains and consumer rights, my hon. Friend might be aware that the all-party group on Bangladesh visited that country last September to look into the Rana Plaza collapse. One thing that came out of our report was the suggestion that consumers should be able to identify whether garments have been produced ethically through a supply chain that does not use people who work in bonded workshops or sweatshops or who are badly treated and not paid a fair wage for a fair day’s work. That is the driving force. I know the Minister is considering a kitemark for garments so that people can be reassured.

[George Freeman]

My hon. Friend makes another excellent point. If we are to seize the benefits of globalisation and embrace our potential to play a role in those emerging markets, we could help set in place a framework in which citizens of the globe can buy products from the global supply chain confident that they are not supporting sweatshops or irresponsible capitalism. That is a deeply inspiring and progressive purpose for this country in the next cycle of growth around the world.

Consumer rights are not the sexiest subject in public debate—it is not something one hears discussed in those terms down at The Dog and Duck—but it sits at the heart of a lot of the issues the electorate, citizens and taxpayers in this country are grappling with. I do not want to be overly partisan, but under Labour we had 13 years of what increasingly—and perhaps surprisingly—became an example of crony capitalism, and the nation is now grappling with that inheritance: an overconcentration of wealth, privilege and power, and in key markets, such as banking and elsewhere, a small number of providers. As a consequence of that crisis—the black hole in the public finances, the structural deficit—we will have to unleash the powers of modern consumer citizens to drive enlightened public services and a more entrepreneurial and innovative recovery. Consumer rights—consumers of public services as well as private goods—sit at the heart of that. Consumers must be able to understand and demand the right standards from all those supplying them goods and services—whether at the till in the supermarket, on a global website or in the public services on which we all rely—and to hold them to account.

Network Rail

Debate between George Freeman and Anne Main

Thursday 2nd February 2012 Westminster Hall

[Mrs Main]

I thank my hon. Friend for his intervention. The passengers are compensated to an extent, but it is a very limited form of compensation. Believe me: First Capital Connect was paying out tons of it as of 2010. As my hon. Friend will hear me go on to say, it is our money paying the fines. That is ridiculous. I hope that freedom of information requests will be allowed. It seems that that is within the Minister’s gift.

Network Rail is not audited by the National Audit Office. It is audited by PricewaterhouseCoopers, but that is simply to check whether the accounts are in order. It is not audited on the basis of value for money. The National Audit Office remarked that the Department’s

“understanding of the relationship between cost and value was weakest in rail”.

It also says that a

“lack of transparency on Network Rail’s costs is consistent with our past reports on the Department and the Office of Rail Regulation.”

That has been highlighted for a significant period; there is a long-standing concern about a lack of transparency on costs. Can the Minister tell us today whether we can expect Network Rail to be subject to auditing by the National Audit Office? I ask that because I would like clarification. The National Audit Office is saying that it cannot gain an understanding of the position because Network Rail’s own figures are vague. Will the Minister clarify that we can strengthen the role of the National Audit Office?

The Public Accounts Committee has been especially damning of Network Rail’s accountability. In a 2011 report, it said:

“Network Rail has no accountability to shareholders, nor does the National Audit Office have full access, so Network Rail is not directly accountable to Parliament.”

It went on to say that it

“unfortunately won’t be able to give a clear opinion on the whole-of-Government accounts

until Network Rail’s status changes. That could well be the crux of the debate: how we change the status of Network Rail. Does the Minister accept the need to change the status of Network Rail? Does he share the concerns of the Committee that Network Rail is not accountable to anyone, particularly its paymasters in Parliament?

The Office of Rail Regulation is not holding Network Rail to account in any meaningful way. Anyone who watched the “Panorama” documentary last month will have seen Cathryn Ross, director of railway markets and economics for ORR, giving her responses. She confirmed that ORR has to be given the information by Network Rail in order to regulate it. However, as we have seen with the National Audit Office, getting any detailed information out of Network Rail is well nigh impossible. When pressed, she appeared totally unable to detail in any meaningful way any scrutiny that had been carried out on behalf of the regulator. Does the Minister find it unsatisfactory that ORR must rely on information supplied by Network Rail in order to act?

Only this week, Network Rail has been found guilty of serious failings that led to the tragic deaths of two teenagers—Olivia Bazlinton and Charlotte Thompson. There were not only failings in health and safety, but suggestions of a cover-up within Network Rail at the highest levels, aimed at concealing its mistakes. The families said in the media that they felt “lied to”, so can we really rely on Network Rail to give accurate information to anyone, even ORR?

The rail regulator is looking to expand its role. Given its mixed record on regulating Network Rail alone, its expansion is highly questionable. Michael Roberts, chief executive of the Association of Train Operating Companies, said in December:

“Train companies recognise they need to be held to account but plans to expand the ORR’s role to include more oversight of operators must be rigorously tested. The regulator needs to continue focusing on doing a better job of holding Network Rail to account, particularly on performance and cost-efficiency, before taking on new responsibilities.”

The Public Accounts Committee said in relation to ORR’s performance that

“we do not believe that the Regulator exerted sufficient pressure on Network Rail to improve its efficiency, and that there is an absence of effective sanctions for under-performance in the system...We doubt whether the Regulator is able to exert sufficient pressure on Network Rail’s performance”.

It has also said:

“The Office of Rail Regulation does not have a grip on Network Rail’s efficiency and appeared remarkably relaxed about the continuing gap in performance between Network Rail and international comparators.”

Those are hugely damning observations; they are damning in so many different areas. They question the ability of ORR to deliver on any meaningful level. Should the Government be allowing ORR to expand its role when it so obviously cannot do the role that it already has? Does the Minster share those concerns? Will he consider ways to improve the rigour of ORR’s role?

Network Rail can be financially punished by ORR through fines. However, Network Rail is financially supported by the Government. As my hon. Friend the Member for North Thanet (Sir Roger Gale) pointed out, fines go to the Government from Network Rail, which receives Government money. That is a ludicrous circle. Highly paid executives are paying for failures with public money.

ORR can also impose enforcement orders on Network Rail if it misses its targets, which it does on numerous occasions. That may sound impressive, but it amounts to Network Rail having simply to suggest plans to meet targets. We have spoken about the current targets. There is already an admission that Network Rail is highly unlikely to meet the new targets. That is disgraceful. The organisation is a toothless tiger. That has to change.

The “members” of Network Rail, the stakeholders, are also meant to hold Network Rail to account, but they, too, rely on Network Rail’s own disclosure of the figures to do that. We keep coming back to the fact that no one can hold Network Rail to account unless Network Rail wishes to hang itself with its own figures. It simply chooses not to do so, or puts them in such a way that it is impossible for anyone to hold it to account.

The question that must be asked, and the real point of the debate, is this. What incentive is there for Network Rail to improve? I argue that, under the current system, there is none. Does the Minister believe that he can put in place mechanisms to oblige Network Rail to deliver significant improvements? I hope that today he will be able to outline some of those for us.

We have the highest track-access charges in Europe. Those costs are inevitably passed on to the travelling public. Sir Roy McNulty said in his report that running the rail network here was 30% more expensive than in comparable European countries. I admit that I do not know how that figure was arrived at, but I have not noticed anyone saying that it is inaccurate or giving a different figure. Does the Minister agree with the 30% figure, and what can his Department do to make Network Rail bring down its track access costs and other costs? On reading the details surrounding that figure, it could as easily be higher as well as lower.

The scale of the problem that faces Network Rail, which it recognises but chooses not to deal with, is illustrated by the fact that it employs 600 delay attribution staff. If anyone has talked to their own train operating company, they know how important it is to be able to attribute blame for a fault because it makes a difference as to who pays the bill. If the delay in operations is Network Rail’s fault, the fines are paid by Network Rail. If it is the fault of the train operating company, it goes on the performance data of the TOC and it has to pay the fine. As Members can imagine, the squabble can be pretty unedifying. Network Rail spends its entire time, and our taxpayers’ money, divvying up the blame and fee penalties among the train operating companies, and then using taxpayers’ money to pay the fines for any delays.

You could not make this up, Mr Amess. I am amazed that we have all decided to accept this appalling situation for such a long period of time. Network Rail has presided over a litany of high-profile failures. Some have resulted in criminal prosecutions. I do not wish to go into too much detail here, because the hon. Members representing those areas may be present in the Chamber. However, the Virgin train derailment near the Cumbrian village of Grayrigg was one such incident. Such failures are causing deaths and significant injuries, and Network Rail’s declining performance has put it in breach of its licence. Despite being “the experts”—as I said earlier, Network Rail’s expert opinion is heavily relied on—Network Rail has presided over a system in which rail freight delays are 32% worse than the end-of-target year. Long distance punctuality stands at 87%, which is well below the target of the Office of Rail Regulation. Delays have risen, which proves that the network has become less resilient to disruptions. That is important. Some workers have said to me, “I don’t want to lose my job, but I have serious concerns about the work that is being done by Network Rail on maintenance and oversight of engineers.” That is a serious issue. People within the industry feel that they must keep their mouths shut about the things that they can see not being done correctly. Network Rail does not give the travelling public any confidence that its rail service is as safe as it should be.

[George Freeman (Mid Norfolk) (Con)]

My hon. Friend is making a very powerful case, which many of us sympathise with; my constituents certainly will, too. She says that we need to consider new models. Does she agree that we should be really bold and radical in tackling this problem, which is a legacy of some of the mistakes of privatisation compounded massively by a botched renationalisation under the previous Government? In my own region of East Anglia, rail has a crucial role to play in driving a rebalanced economy, innovation and investment. Does she think it might be sensible for us to consider—possibly in areas such as East Anglia—putting track and train operating company back together, thereby creating a regional rail company that has full integration, a long-term franchise and the ability to invest and plan for future services?

[Mrs Main]

That is an extremely valuable contribution. This debate is not simply about reading out a list of failures and then going away and allowing the situation to continue. If we were to do that, we would be failing the public again and again. Indeed, some of those tragedies that have occurred may happen again somewhere else. We must be radical. I do not wish to take up too much time at the beginning of this debate saying what we should be doing. My hon. Friend is absolutely right though. There are innovative methods. One thought is to have 10 regional areas operating on a system of alliancing. That is a phrase that I had not heard before, but it means having a deeper and more meaningful relationship with the train operating companies. Such a system relies on companies having longer franchises. Many ideas should be considered. None the less, significant issues need to be tackled. We are left with a structure that is patently not fit for purpose. I would like us to say that we will not accept a tinkering around the edges with this. I do not want us to say, “We will just remove one chief executive and stick another one in.” If we do that, we are basically left with all the same people, in the same place, presiding over yet another set of failures. Radicalisation is the only way forward. I am sure that we will hear different suggestions from hon. Members today. We need to sweep out the Augean stables of Network Rail. There are no two ways about it; we are talking about not tinkering but a fundamental change.

I wish to give other colleagues a chance to speak. As I have said, the list is long and damning. Network Rail has been fined for so many project overruns. On “Panorama”, we heard about the major investment in Reading. It is impossible to find out what the project was supposed to cost in the first place to know how much it has overrun.

Chiltern Railways wanted to have a station built. Network Rail estimated the cost at £13.2 million. Chiltern managed to build it itself for £5.2 million. One has to ask how Network Rail carries out its costings. One has to ask whether there is money washing about in the organisation in what can only be described as a negligent way. There are people who should stand before the Government to justify how they are spending our money, because it seems to be highly questionable.

I want to give other colleagues a chance to speak. As I have said, the list is long and damning, and I am sure that Members will add to it. I hope that we will explore all of the issues, including the way forward, because we need a way forward. I look forward to hearing answers to some of the questions that I have posed to the Minister.