Eating Disorders: Provision of Care

Lord Giddens Excerpts

Tuesday 4th February 2020 Lords Chamber

[Lord Giddens (Lab)]

My Lords, I congratulate the noble Baroness, Lady Parminter, on having secured this debate and introducing it so ably.

I start, somewhat improbably, in China—a part of the world currently in the news for reasons other than what I want to talk about. Only some four decades ago, 40 million people starved to death in the country during Mao’s rule; far greater numbers suffered from pronounced malnutrition. Switch to the present and things look very different indeed. Some 800 million people have been brought out of poverty over that period. Huge urban centres—several far larger than London—have emerged where there was once barren countryside.

I do not know whether noble Lords saw the TV programme on Shenzhen the other night. It was amazing—40 years ago nothing was there but green fields and a river; now, it is a massive high-tech centre, outstripping Silicon Valley. As noble Lords will learn in a moment, I am not in the wrong debate. Nothing like this has ever been accomplished before. Yet not all such change is positive. Some 30% of the population in China today—300 million people—are overweight or obese. An estimated 50 million still suffer from food deprivation, but now as a result of anorexia. A whole spectrum of online “vomit bars” has sprung up in which people encourage each other to vomit after eating.

As China goes, so goes much of the rest the globe. The number of people either overweight or obese in the world now surpasses those who live at near-starvation levels—an amazing, but not wholly positive, turnaround. What a reversal of history this is, and, totally unlike in the past, the vast majority of obese people are not the rich but those in lower income groups. The poor used to be the ones who were undernourished or starved to death. Today, in complete contrast to starvation in the past, anorexia across the world is mostly a pathology of the more affluent.

All this may seem a bit remote from the Question posed by the noble Baroness, Lady Parminter, and indeed from the UK. However, I see it as an essential backdrop. It shows the sheer scale of the issues involved, based on a sort of global reversal of traditional diets and eating habits. It was good to see Health Secretary Matt Hancock taking a similarly macroscopic view in a speech to a recent conference on eating disorders.

The term “eating disorder” is usually reserved for those suffering from anorexia and/or bulimia. Yet the only genetic factor involved in these conditions is dispositional, not causative, which is exactly the same in the case of obesity. The health implications are far-reaching indeed. Two-thirds of adults in the UK are classified as overweight or obese, with a full third in the second of these categories. Anorexia and obesity used to be thought of as two distinct populations; to some degree this is true, since the former is more often linked to high levels of distress and malfunction. However, the incidence of anorexia is much lower. Recent research indicates that those at the more extreme levels of obesity show comparable levels of anxiety, stress and depression to those with anorexia, particularly in the case of female sufferers.

I welcome the Government’s initiatives for raising consciousness in schools about eating disorders and their parallel reforms to provide early treatment within the NHS. More than one report in the Commons has warned about the serious lack of training on eating disorders for doctors. Just as important is ensuring that GPs are up to date with the most recent research in a field that has a strong medical pathology yet is closely embedded in lifestyle.

Since the Minister has strong Oxford connections—and speaking as an academic myself—I should like to ask her views on the avant-garde research into anorectic disorders being carried out by the Department of Psychiatry at Oxford University. The interest of this work is the attempt to link the biological, emotional and somatic processes involved in anorexia. There is a shortage of evidence-based treatments for anorexia and eating disorders more generally. The Oxford Centre for Human Brain Activity—a really interesting research organisation—is working together with psychiatrists and social scientists on this.

We need further long-term studies of eating disorders, in the wide sense in which I am using the term. A study carried out at Harvard University showed that fewer than half of adults in the US achieve recovery from anorexia or bulimia nervosa over the long term. It is good to see that this research explores the links between those apparent opposites—anorexia and obesity—which I am saying are part of a connected syndrome. The common link is a compulsive relationship to food coupled with distorted but powerful body imagery. Some of the underlying neural mechanisms seem to be the same. One piece of research in the US describes anorexia and obesity as—going back to Chinese—the yin and yang of bodily weight control.

“Go on a diet!” That is the common-sense response to obesity. However, both anorexia and obesity stem from the fact that we live in a world where we are all on a diet. For the first time in history, an almost endless array of foods is available on a daily basis. Every day, consciously or not, we have to decide what to eat in relation to how to be. Even noble Lords have to take these decisions since there are so many cafés on site here; I never quite know which one to go to at a particular time.

I have a couple of questions for the Minister in concluding, as one is supposed to. First, what procedures have the Government established to track and assimilate cutting-edge research on the diagnosis and treatment of eating disorders? By that I mean international research, not simply research in this country; as I am trying to stress, this is an amazing global reversal in human beings’ relationship to food and the body, so the research needs to be transnational. Secondly, and in conclusion, will the UK follow the lead of other countries in recognising the need to explore the aetiological parallels between anorexia and obesity?

Mental Health of Children and Young Adults

Lord Giddens Excerpts

Thursday 16th May 2019 Lords Chamber

[Lord Giddens (Lab)]

In that case, my Lords, I will start.

Let me begin by congratulating my noble friend Lady Royall on having secured this debate and on introducing it so ably. I am a bit far up the list for this, but my subject is a deeply perturbing one. I want to offer some comments on suicide and suicidal behaviour in relation to the mental health of children and young people.

Is there anything more tragic? It is not just a case of lives lost; it is a case of lives foregone. We cannot respond as a society unless we grasp the dynamics of suicide more generally. Understanding suicide poses unique problems, because by definition you cannot ask the individual why she or he acted as they did. Motives have to be inferred after the event, and this is often extremely problematic. For this reason, official suicide statistics, although they influence much public policy, are always pretty suspect. Can the Minister comment on this, given that suicide rates figure very largely in the national suicide prevention strategy, which I otherwise strongly support?

I spent a good deal of my academic career studying suicide and related behaviours. In my view, we need much more in-depth and sophisticated measures than suicide statistics if we are going to monitor the success or otherwise of prevention strategies. Some aspects of suicidal behaviour are absolutely counterintuitive. People will travel hundreds, even thousands, of miles to throw themselves off the Golden Gate Bridge in California, or in this country, Beachy Head. These include substantial proportions of young people. The youngest who has jumped from the Golden Gate Bridge was only five years old—albeit egged on by her father. Many have been teenagers and young adults, as at Beachy Head.

The Golden Gate Bridge provides the closest we have been able to get to talking to people who have committed suicide, which is otherwise a complete paradox. Throwing yourself off that bridge has a 98% fatality rate. Some of the tiny minority who survived, however, have been interviewed. They all said—this is pretty gripping—that as soon as they started falling, they regretted what they had done. One said, “The second my hand left the bar, I said, ‘I don’t want to die. What am I going to do?’ So I said, ‘Maybe if I get feet first, I’ll live’”. And in fact, this person did, but statistically it is virtually impossible to achieve. Your Lordships may ask what proportion of other suicides this would apply to, if there was data for this doubly tragic act—triply tragic in the case of children and young people.

The research also studied people who tried to jump off the Golden Gate Bridge but at the last minute were prevented from doing so by the police. Amazingly, the results showed that only 6% went on kill themselves. The rest—all 94% of them—lived out their normal lifespan. In other words, and importantly for the relationship to mental health, it is not the case that they remained suicidal personalities. In fact, that very notion is suspect.

The biggest reduction in suicides that has ever occurred in this country did not come from therapy or mental health treatment; it came when natural gas replaced coal-fired gas. Putting your head in the oven had accounted for almost 50% of suicides before that point, but then we saw a steep reduction in the suicide rate, which I am sure was real. The implications of this have to be clearly thought through. Suicide is very different from many of the things that people write about it and much more problematic in its motivation. This has to be recognised.

The suicide prevention strategy that has been rolled out at national level is a very worthwhile initiative. It is also good that substantial public funding has been allocated to organisations such as the Samaritans and the Zero Suicide Alliance. However, does the Minister think that the strategy embodies the most avant-garde thinking about suicide, in the light of research such as I have mentioned? I am not at all sure that this is the case.

In conclusion, perhaps she would like to comment on the following points. First, I know that this debate is about mental health, but it is time to move away from the mental health model of suicidal behaviour towards a more sophisticated perspective, recognising the symbolic richness of that action. Secondly, suicide, attempted and actual, is often as much a form of self-assertion as it is of despair. Thirdly, as the Harvard School of Public Health puts it:

“Intent isn’t all that determines whether an attempter lives or dies”.


The way in which it is done is often symbolically crucial, as your Lordships can see from the case of the Golden Gate Bridge. It is not often that someone says to themselves, “I just want to die and I don’t care how that happens”. More often than not, there is a deeply symbolic and rich emotional content to it.

I hope the Minister will recognise that understanding these complexities is key to the prevention strategy which the Government have quite rightly introduced.

NHS: Cancer Treatments

Lord Giddens Excerpts

Thursday 25th January 2018 Lords Chamber

[Lord Giddens (Lab)]

My Lords, this has been a magical debate. I cannot remember anything quite like it in all my time in your Lordships’ House and I believe it will have a profound effect. I express my great admiration for my noble friend Lady Jowell: for her steely determination, her compassion and her humanity for other people. This debate will be seen in many different countries.

Quite a few years ago, the celebrated American biologist Stephen Jay Gould was diagnosed with mesothelioma, which is cancer derived from contact with asbestos. Doctors told him that he had only eight months to live—or that is what he thought they had told him, because this was the average survival period. He looked at this, as a statistician, and understood that what matters about an average is not just the average itself but the span of possibilities. He famously said:

“I am an optimist who tends to see the doughnut instead of the hole”.


He studied the evidence on survival rates, in a careful and sophisticated way, and his conclusion was that,

“those with positive attitudes, with a strong will and purpose for living, with commitment to struggle … and not just a passive acceptance of anything doctors say, tend to live longer”.

Stephen Jay Gould lived for 22 years after his diagnosis. Admittedly, this was through the supreme force of his will and his knowledgeability, but it shows that you must interrogate any diagnosis that is made. That is crucial; it was crucial for him. Moreover, his fame brought mesothelioma out of the shadows where it had languished for so long—a bit like with tobacco, there was a lot of industry resistance.

My glory was stolen a bit by the previous speaker, because I was going to conclude by saying that we are on the threshold of some of the greatest innovations ever made in medicine. These are coming very quickly. Why? Because of the algorithmic power of supercomputers; because doctors and medical researchers can share their research instantaneously across the world, which was not possible before the digital age; and because of linked advances in genomics and genetics. There is enormous hope. For example, the situation with myeloid leukaemia, which was thought to be incurable, is now quite different because of these research breakthroughs.

The main question to be asked of the Minister is the one that inspired the debate: will these breakthroughs be confined to the privileged few? The NHS is in the middle of a horrible crisis. The problems of the changing demographic structure of our society lie behind this. Will the Minister say, forcefully, that the treatment of relatively rare cancers such as brain cancer and mesothelioma will not suffer as a result of the situation in our health service, and that he will take direct measures to ensure this?

Mental Health: Young People

Lord Giddens Excerpts

Thursday 9th February 2017 Grand Committee

[Lord Giddens (Lab)]

My Lords, I shall make some remarks about anorexia and obesity in children and young people, subjects that I have spent a chunk of my academic career studying. Anorexia has the highest death rate of any psychiatric disorder. Childhood obesity, as we all know, has taken on the characteristics of a huge epidemic: 20% of children aged 10 and 11 are obese in England and Wales. They seem separate conditions, almost opposites, but they are very closely linked. Both should be categorised as in some part mental disorders and are becoming so. The link is obsession-compulsion in relation to food and the body. Bulimia is like a bridge between the two in the experience of some young people.

There is a kind of unbelievable historical reversal going on here. Being fat was a characteristic of rich people and affected a tiny proportion of people in history. Anorexia was not even diagnosed until the late 19th century and was only known in the activities of saints fasting for the glory of God. Then about 50 years ago we had an amazing generalisation, not just in this country but across the world, of these linked conditions. To me, the main driving force is the advent of supermarket culture from about the 1950s and 1960s. This was the time when one had to decide what to eat in relation to how to be and we found an invasion of the body by compulsions and addictions.

I became interested in anorexia one weekend when I picked up two colour supplements of the Sunday papers. One had a starving teenager in Africa and the other had a starving teenager in the United States in the midst of an abundance of food. I thought that these conditions must be totally different, and so they are. We can be sure that these do not have genetic origins and the family and the peer group are plainly important influences. The family has a double role, obviously, because it can be causative in mental disorders as well as therapeutic. The work of the AYPH, which we are discussing today, is valuable here and slots into wider academic research.

I have a couple of quick questions for the Minister. Are the plans to combat eating disorders announced in January 2016 still on track? What happened to the waiting time targets for teenagers with eating disorders? Finally, what progress has been made with the conclusions of the document Childhood Obesity: A Plan for Action, which also came out in 2016?

Mesothelioma

Lord Giddens Excerpts

Thursday 27th October 2016 Grand Committee

[Lord Giddens (Lab)]

My Lords, mesothelioma, if I may put it in this way, has a past and a future. The past has seen a long struggle to get the origins of the disease recognised and then to achieve adequate compensation for those suffering from it. That struggle is well documented in the book by Geoffrey Tweedale, Magic Mineral to Killer Dust. Asbestos was originally a magic mineral. He shows in detail just how much industry resistance there was to accepting the link between asbestos and mesothelioma.

I wish to pay tribute to MPs and noble Lords. If your Lordships will forgive me, I should like to single out—it is like a little boys’ club—the noble Lords, Lord Alton and Lord Wills, with whom I have worked closely, but many have been involved in pressing for proper recognition of the disease and for increased compensation for sufferers. That struggle, of course, continues. The British Lung Foundation has been mentioned, and a range of other, more local groups have had a significant impact. It is good news that former members of the armed services who have contracted mesothelioma will henceforth be entitled to significant compensation. However, on the issues of adequate compensation and giving the disease a higher profile in the public consciousness, plainly a lot more needs to be done. I am afraid that Action Mesothelioma Day, designated as Friday 1 July this year, received only scant coverage in the press.

When I say that mesothelioma has a past but also a future, I mean that it is time to stop it being seen as simply a legacy disease—a hangover from a time when asbestos was widely used. I believe—and I hope that people who work more directly in medicine than me will agree—that we are entering a period of potential breakthroughs on the frontiers of medical research, especially as concerns the diverse forms of cancer. The awesome algorithmic power of supercomputers is making possible advances in genetics that could not have been achieved before. A good example—perhaps the most well known—is the supercomputer Watson, which won the amazing game of “Jeopardy!” on American television. It is an ordinary-language, everyday knowledge game. At one point, no one thought that it would be possible for a computer to win it, as it depends on so much everyday knowledge. In terms of being applied to cancer research, as is now the case, Watson and other supercomputers have massive capacities compared with any human researcher. They may not have the same innovative capacities, but their algorithmic powers are extraordinary. Watson can sift through literally millions of scientific papers and use data-mining to suggest hypotheses to be subject to further tests. One should also mention the supercomputer Beagle at the University of Chicago, which is being used to radically accelerate genome analysis.

For the first time ever—perhaps because of the digital revolution, which is one of the things we are talking about—there is a truly global community of scientists working at the cutting edge of medical issues once thought to be intractable. As a result of such ongoing research, we now know that mesothelioma shares certain components, on a genetic level, with other types of cancer. Cancers are in general now increasingly identified genetically rather than described on a more macro level. This means that research into the nature of mesothelioma is of broader significance than was once thought to be the case, and that advancing knowledge about other forms of cancer can in turn be brought to bear on mesothelioma. For these reasons, like other noble Lords, I very much welcome the £5 million towards establishing a research centre, which the noble Lord, Lord Prior, has played such an important part in. As the noble Lord knows, I would like us to raise further sums, which I believe one can do once this funding exists. I would like the centre to have a global orientation linked to, for example, the Pacific Mesothelioma Center in Los Angeles. We should drive research onwards to look not just for improved treatments but for something that is perhaps no longer completely impossible: some kind of cure.

Mesothelioma (Amendment) Bill [HL]

Lord Giddens Excerpts

Friday 20th November 2015 Lords Chamber

[Lord Giddens (Lab)]

My Lords, this has been a terrific debate so far and I congratulate all noble Lords who have contributed to it. I do not usually like to write out my speeches but, for some reason, I made an exception in this case—although I did not write it out but dictated it to a computer and the computer typed it out, which is utterly amazing and relevant to what I am going to say. However, I have noted down so many contributions from other noble Lords that the whole strategy has been completely messed up.

I pay tribute to the superannuated choirboy, the noble Lord, Lord Alton, for his extraordinary work. I am not sure whether or not that was a compliment, but it will stick with him. I join others in congratulating him on the extraordinary work that he has done to promote the cause of those suffering from this horrible disease. I also thank the noble Lord, Lord Wills, for the work he has done alongside us and the British Lung Foundation for being an enormous source of support so far.

As other noble Lords have said, it is difficult to calculate with any accuracy the true level of risk of mesothelioma to members of the population. The usual estimates suggest that 60,000 people will die of the disease in the UK by 2025 if appropriate treatments are not found. However, the real number could be considerably higher because, as other noble Lords have said, asbestos is coming to light in buildings and enterprises where its existence was previously unsuspected. I was glad that the noble Lord, Lord Ribeiro, spoke up as he did because we must accept that this is a global issue and that we must contribute to it on a global level. The number of people scheduled to die of the disease in the developing world if we do not find breakthroughs is 1 million, but that is a minimum estimate and it could be several times that. We should make a contribution to research not only in this country but should network with researchers across the rest of the world.

As other noble Lords have said, mesothelioma is often seen essentially as a phenomenon of the past. After all, asbestos is no longer used in industry—at least in this country—or in construction. Hence many of the debates about it have concentrated on providing compensation for sufferers who, after all, developed the malady through absolutely no fault of their own. In my view, it is still right and proper to press the industries responsible, plus the insurance industry, to increase the existing levies that have been agreed, and other noble Lords have made this point. My noble friend Lord Wills effectively pointed out that it would save the country money rather than produce extra costs.

However, I argue strongly that we should see mesothelioma as a disease that is relevant to our future, not just to the past, and not accept that it is a malady for which there is no possible cure or effective mode of treatment. Unlike the noble Lord, Lord Kakkar, and my noble friend Lord Winston, I am not a medical expert. However, I have spent the past few years working on the digital revolution and studying its likely impact on the outer edges of medicine. I have said this before in your Lordships’ House: the digital revolution is the greatest, fastest and most global technological revolution we have ever lived through. It is moving vastly faster than the original Industrial Revolution and has amazing potential applications to the frontiers of medicine.

For that reason, I think that we are living through what could well be a period of quite unparalleled innovation in medicine and other frontier areas of science more generally. There are three reasons for this and they are all bound up with the digital revolution. The first is that the emergence of hugely powerful supercomputers gives us an opportunity to decode genetic chains in a way that would have been impossible even a few years ago. Secondly, these capacities overlap with major advances in fundamental areas of genetics as such. My noble friend Lord Winston made the point really effectively in the debate, as did the noble Lord, Lord Kakkar. Mesothelioma should no longer be treated as simply an isolated disease. Thirdly, because of the advance of digital technologies and global communications, scientists are able to share data sources in an immediate fashion across the world.

Because of the advances in genetics, as I have just mentioned, we have come to see that mesothelioma is not a disease apart. As my noble friend Lord Winston stressed, research into mesothelioma can draw on work from outside the sphere of the illness itself and, crucially, it can contribute to our understanding of other forms of cancer. We have made significant advances in our understanding of the mutations that allow uncontrolled cellular multiplication and spread. Some such mutations are shared in common by a range of tumours, so our understanding of the genetic components in question can in principle be generalised. In the near future, cancers are likely to be identified by their particular mutations rather than by their site of origin—for example, lung cancer and breast cancer. Treatments developed on this basis are already so successful in some areas that they allow for normal life until a person dies of other causes.

In the past, we know that at least some talented researchers tended to steer clear of mesothelioma precisely because it was seen as a residual disease. Given the innovations mentioned above, the situation could be very different in the future. Therefore systematic research into mesothelioma could have a crucial impact on medicine going forward. It could be relevant to other environmental diseases because it takes 30 or 40 years to come out. We live in a world in which we are ingesting any number of new substances, so we have to try to have a proactive, preventive strategy for that. Studying mesothelioma could illuminate these areas too. I therefore hope very much that the Minister will investigate the possibility of the Government providing funding to help to establish a national mesothelioma research centre, as other noble Lords have mentioned. I have reason to believe that we can get substantial funding from private sources, so if that could be matched we could get the whole enterprise off the ground.

Everyone else has mentioned Winston Churchill, so I may as well end with a Winston Churchill story, given that I have not spoken for that long. I used to be the head of the London School of Economics, one of whose founders was George Bernard Shaw. He had an acerbic relationship with Winston Churchill. The story goes like this. George Bernard Shaw wrote to Winston Churchill saying, “Dear Winston, here are two tickets for the first night of my new play. Please bring a friend, always assuming you have a friend”. Winston Churchill wrote back saying, “Dear Bernard, I am sorry, I cannot make the first night. Please send me tickets for the second night, always assuming there is a second night”.

--- Later in debate ---

[Lord Prior of Brampton]

We probably cannot today sort out the figures in the way we would like. It will be very difficult to allocate some of the more generic research expenditure. Let us move on from funding, if we can.

[Lord Giddens]

Will the Minister get to work on this and send something back about what the precise figures seem to be in the light of the questions raised? This is a serious issue, so it would be good to get a response from the Government.

--- Later in debate ---

[Lord Prior of Brampton]

I thank the noble Lord for that comment. We in this country are often highly self-critical but actually we have a remarkable record on research. We have three of the top medical academic institutions in the world in this country: Oxford, Cambridge and Imperial. We have UCLH, King’s and Manchester. We have some extraordinary research organisations in this country. There is, I guess, an issue over quality and quality control. There are an awful lot of clinicians who do research that may not be to the—

[Lord Giddens]

I am sorry to give the Minister such a torrid time, but I hope he recognises that he should look internationally. There are important models in other countries, such as the Pacific Lung Health Centre, which is integrated with the wider lung foundation and has produced significant research. We should not just think nationally; we should look at other models and see how they could be adopted here to deal with the issues that the noble Lord, Lord Winston, rightly raises. As I tried to stress, mesothelioma shares things in common with other cancers and, now that we have got to a deep enough genetic level to be able to understand why some of these processes happen, I think it would be worth while to get some information on what exists elsewhere to see how far it could be applied here.

[Lord Prior of Brampton]

I agree.

Medical Innovation Bill [HL]

Lord Giddens Excerpts

Friday 23rd January 2015 Lords Chamber

[Lord Kakkar]

My Lords, I remind noble Lords of my interests, stated earlier, as professor of surgery at University College and as a member of the GMC, but I do not speak for the council in this Chamber.

I thank the noble Lord, Lord Hunt of Kings Heath, for once again bringing this issue to your Lordships’ House. It is critically important, and probably one of its most vital elements is that there is the opportunity for registration of innovative interventions and therapies.

Clearly, providing transparency and the opportunity for sharing the outcomes of such innovations rapidly and broadly across clinical communities in this country and internationally is of so much importance. It will allow colleagues to understand what has been achieved and not achieved; it will allow those with other ideas to build on knowledge gained from experience to date; and it will ensure that through transparency we have the best opportunity to ensure the greatest patient protection. I am very grateful to the noble Lord, Lord Saatchi, for having considered this issue carefully and having come to the place where he has put his name to the amendment and supports it. I hope that Her Majesty’s Government will be able to consider this issue. The measure enjoys substantial support and will be a vital contribution to this long journey with regard to innovation, ensuring that we can do the best for patients as rapidly as possible without undermining the very best practice and the ability to share knowledge, and ultimately ensuring that this Bill enhances patient safety.

[Lord Giddens (Lab)]

My Lords, I strongly support this amendment and hope the Government will take it seriously because we are talking here about not innovation but scientific innovation. Science is a collective enterprise. It depends on the accumulation of evidence. It is crucial that that be recognised formally somewhere in the Bill, with this embodied as part of the advancement of scientific progress more generally.

[Baroness Gardner of Parkes]

My Lords, I support this amendment. I was surprised that the Government took a line similar to my own on the previous amendment because I was greatly reassured by what noble Lords said on that point. In this case, and right from the start of the passage of the Bill, we have all believed it essential to fully record what happens. The whole aim of this has been not only to give hope to people via an innovative treatment but also to have research that will benefit other people in future. No one has for a minute queried the need for recording the cases and results. I would be amazed and shocked if the Government denied that today.

--- Later in debate ---

[Earl Howe]

My Lords, I have been in the House long enough to know that when the noble and learned Lord, Lord Woolf, opines on something, it is a matter that all noble Lords would do well to listen to, and I am grateful to him. I agree that the amendment does not change the standard of care, we are agreed on that, but our concern is that a court might look at the requirements under the Act—and this is one of the requirements—as part of the picture that it would form as to whether or not the doctor had acted responsibly. It is merely part of the picture.

If we are agreed on that, and I hope that we are, it does not seem sensible to me that we should impose requirements in the Bill additional to those under the existing law, as that could risk deterring doctors from innovating under the Bill. Let us not forget that a doctor does not have to follow the Bill if he or she does not want to; they can simply rely on the Bolam test later on if they are challenged. Do we want to deter doctors in the form of a test or requirement that obliges them to go further than they would otherwise go? If they were deterred by that, it would defeat the whole object of the Bill and result in less benefit to patients, so I worry about that.

The amendment from the noble Lord, Lord Hunt, specifies that the use of a scheme be enforced through professional requirements. We have sought advice from the GMC about whether professional requirements in the form of guidance might be a suitable route to enforce the sharing of learning from innovation. The GMC has been clear that it is very happy to consider anything it can do to be helpful. However, from those initial conversations, it seems that this may not in fact be an effective route. The GMC’s statutory power is to provide advice. Doctors must be prepared to justify their decisions and actions against the standards set out in its guidance.

Serious or persistent failure to follow the guidance would put a doctor’s registration at risk. So on the one hand, were we to go down this route, a doctor who failed only once to use a data registry might not face any consequences; that would be okay for the doctor. However, this would not address noble Lords’ concerns that the results of each and every innovative treatment, whether or not successful, should be recorded. On the other hand, if a doctor persistently failed to use the data registry, this could result in fitness to practise proceedings being brought against him or her for not having recorded information on an online database designed to foster the sharing of learning from innovation. Should a doctor’s fitness to practise be called in question simply on those grounds, that really does not seem a proportionate response.

For the reasons that I have outlined today—namely, the difficulty of relying on professional requirements and the link, which I hope noble Lords will accept, to the test of clinical negligence—the Government would not be able to support this amendment.

[Lord Giddens]

I am not a medical specialist but I have followed this all the way through. What kind of structure would the Minister envisage being put in place if there is not a formal requirement of this sort? If you do not have some kind of system of dealing with the data produced, the whole thing becomes an erratic exercise and therefore does not contribute to the overall fund of medical knowledge.

Medical Innovation Bill [HL]

Lord Giddens Excerpts

Friday 24th October 2014 Lords Chamber

I look forward to the answers to the questions and to the response to my Amendments 14, 18 and 34, which give priority to informed consent in order to protect patient safety, manage the expectations of patients accessing innovative treatments and avoid exacerbating the postcode lottery of services. Without robust safeguards there is a danger that people could undergo potentially risky treatments without a full understanding of what they entail.

[Lord Giddens (Lab)]

My Lords, I am neither a medical specialist nor a lawyer and it is pretty near impossible to follow a speech such as that given by my noble friend Lord Winston. However, I am a sociologist and we deal in unintended, or what we often call perverse, consequences. Therefore, to me it is highly important that this Bill, which itself is an innovation, covers the question of whether perverse consequences could arise and whether the Bill could therefore end up subverting some of its own intentions.

With this in mind, I ask the noble Lord, Lord Saatchi, to think again about Amendments 13, 15 and 17 and perhaps to be a bit less dismissive of them than he was in his speech, because I think they would enrich the Bill. A clinical ethics committee would be a more robust way of affirming decisions than the existing way in the Bill. Amendment 13 spells out procedure to be followed. More importantly, it also insists that written records are kept. Critics say that it would add to the bureaucracy but there is no reason why such a committee could not be quite small and have a limited brief.

I regard Amendment 17 as very important. It is crucial that if it becomes law the Bill applies to very specific and limited circumstances. Especially important in my view, and I again speak as a lay person with no direct expertise, are the clauses limiting the legislation to drug treatments and excluding surgery and conditions involving acute trauma. It is important to spell these things out and I do not think they in any way undermine the Bill. They could contribute to what I think should be a key concern of noble Lords to close any avenues to perverse consequences that could arise, especially with legislation dealing with vulnerable people. We all know the issues here are twofold—what do you do about reckless doctors and how do you make sure that vulnerable patients are not exploited? The more loopholes we can close, the better for the progress of the Bill.

[Baroness Finlay of Llandaff (CB)]

My Lords, I have added my name to Amendment 15 and I hope that the Minister will give it due consideration. It is really important that the process laid out in the Bill is recorded in the patient’s clinical record. That is the one way that you can verify that things have been done properly. It is also important that there is notification to the central register, as referred to by the noble Lord, Lord Saatchi.

I also hope that the Minister will be able to give due consideration to the situations already mentioned by the noble Lord, Lord Winston, and others. It is very important that we do not make it more complicated than it is already for clinicians to be able to treat patients as they feel appropriate. It is also important that patients have the appropriate safeguards in place. While quite a lot will go into guidance, there is merit in having emergency treatment actually in the Bill as a situation where the Bill would not apply and that treatment in the best interests of the patient in an emergency can proceed by whichever means appear to be best at the time.

--- Later in debate ---

[Lord Winston]

I do not think that it restricts anything at all but actually makes the Bill of the noble Lord, Lord Saatchi, workable. We need some kind of definition of what an innovation is. That is all the amendment tries to achieve. It is not in any way restrictive. Of course, if one decides to put a plastic tube that is normally used to infiltrate the trachea into another organ, this amendment will permit that to happen, when currently it would not be allowed.

[Lord Giddens]

My Lords, the noble Lord, Lord Saatchi, knows that I support the thrust of the Bill but there are issues around some of these amendments that the noble Lord might at least listen to.

As I have mentioned previously, one of the core things about this legislation, given its sensitive nature, is that we have to comb through it all the time for possible perverse consequences. At the risk of sounding like sociology 101, unintended consequences are different from perverse consequences. Unintended consequences can be good or bad; perverse consequences undermine good intentions and reach the opposite result of what an individual needs to achieve. For example, strong rent controls were introduced in New York City to help poor people; in fact, they adversely affected them because they could not find places to live. The noble Lord says that the Bill is crystal clear in its intent, but that is not enough because there is a massive difference between intent and consequence. I therefore feel that as a general principle we should comb through the whole Bill to try to spot possible perverse consequences.

On the whole, with the reservations that have been noted, I support Amendment 6 because it might help to block off some of those reservations. We surely must know what innovation actually means in the context of clinical practice. Without such specification, one can see that various perverse consequences could occur. What would happen, for example, if a doctor was accused in court of failing to innovate because he or she did not try some eccentric form of treatment that was available? One could block off that perverse consequence by specifying, in the way that Amendment 6 tries to do, what actually counts as innovation.

I feel strongly that as the Bill proceeds through Parliament we must tighten every loophole that could lead to a situation in which, to some degree, the Bill undermines what it is actually supposed to achieve—helping vulnerable patients in a situation in which they are often desperate by bringing innovations to them that they would not have had available before. However, I fear that some of those things could happen if one was not aware of the minefield of perverse consequences. If we do not examine it all carefully, there could be consequences that, to some degree, undermine the purest of intentions with which the legislation is introduced.

[Lord Pannick]

My Lords, I added my name to Amendment 6 because I agree with the noble Lord, Lord Winston, that it would improve the Bill to provide a definition of the core concept of innovation. As the object of the Bill is to provide greater clarity for medical practitioners, it is surely perverse not to include any definition of that core concept in the Bill. No doubt Amendment 6 needs improvement, perhaps for the reasons given by my noble friend Lord Kakkar, but I could not be persuaded that it is beyond the very considerable skills of the draftsman of the Bill, Daniel Greenberg, to provide a definition of innovation.

Mesothelioma: Research Funding

Lord Giddens Excerpts

Thursday 16th January 2014 Grand Committee

[Lord Giddens (Lab)]

My Lords, let me add to the chorus of praise for the noble Lord, Lord Alton, not only for initiating this debate but for all his extraordinary work around this issue. In the debate on the Bill in the Commons, it was said quite frequently that research into mesothelioma has a Cinderella status in terms of research funding. It is worth asking why that is so. It may reflect some generic issues, but I think that there are some specific ones.

The best way to consider this is not to be too parochial about it but to look around the world. When one does this, as I did in my admittedly amateur way, one finds exactly the same pattern in the European countries, in the United States, in Canada and in Australia. That suggests that we are dealing with a deeply structural problem, which has some specific features connected to this disease. Thus, for example, in the United States, according to the figures that I have, the National Cancer Institute until recently invested only 0.01% of its annual budget in research into mesothelioma. That suggests that there might be a powerful cluster of reasons that is producing this marginality in research terms. There are four of them, which I will briefly describe.

First, because of industry resistance—we all know the long history of that—most attention has been focused on reparation and legal wrangles. In so far as the disease is known at all to the wider public, it is mainly due to that history rather than to its own characteristics. Secondly, by its very nature it affects mainly working people, who do not have the political clout of the more affluent. Thirdly, in industrial societies, although not on a global level, it can be seen as an illness that will fade away naturally because asbestos is no longer used in industry and most of it has been disposed of, so it could be said to have a kind of natural life cycle. Fourthly, because of those things, the alleviation of suffering is often seen as important rather than the creation of research in a direct and systematic way into the disease that produces that suffering.

If noble Lords will forgive me for being academic and didactic about this, there are three policy implications of what I have described, which I would like the Minister to ponder and perhaps respond to. First, if we are to get more money spent on research—and there will be a need for public backing for that—the Government should consider spending more on a public awareness campaign about mesothelioma to ensure that it is understood as a structural disease in its own right and that it is disentangled from the legal histories that have so dominated its past. That has happened with lung cancer and smoking; the same thing should happen with mesothelioma.

Secondly, I feel strongly that the objective research should not be just to control symptoms but to search for a cure, as the noble Lord, Lord Avebury, mentioned. I checked some of the treatments in the United States and the debates about them; as I say, I am an amateur in respect of those treatments, but they seem pretty promising. Some new treatments have been admitted to the FDA’s fast-track programme in the US, including gene therapy, which was mentioned, immunotherapy and so on. We should look for a cure for this illness.

Thirdly, the most powerful reason for supporting research is not just that many thousands of people are still affected by mesothelioma and will die from it. As we know, thousands of people will do so, but there are even more powerful reasons than that to support research. A prime reason is that we need research into pathologies of environmental origin. We should remember that only 40 years ago or so asbestos was thought of as the miracle substance. We live in a world in which we ingest, breathe in and are in contact with thousands of substances that have never existed before. It takes about 40 years for mesothelioma to come out; a variety of other consequential diseases might be stored up there. There is therefore a great public interest in this, which stretches well beyond mesothelioma itself. I would appreciate a response from the Minister to those three questions.

Suicide

Lord Giddens Excerpts

Tuesday 23rd April 2013 Grand Committee

[Lord Giddens]

My Lords, I congratulate the noble Baroness, Lady Buscombe, on having introduced this debate in such an effective fashion. Suicide is an extremely complex form of action to study and, hence, to develop preventive strategies against. There are two reasons for that. The first is that, by definition, you cannot interview people who have committed suicide—there are very few other examples in social life where this is true. Secondly, in order to be said to commit suicide, you have to have the intention to die. If you step off a kerb accidentally and a car knocks you down, it is not suicide. As most people do not leave notes, intention has to be inferred retrospectively by coroners.

When I studied suicide in the early part of my academic career, we looked at lots of judgments made by coroners. They led me to be deeply suspicious of suicide statistics and therefore of preventive strategies based on those statistics. It is not that suicide statistics are just inaccurate around the edges; in my opinion, they are often probably totally wrong and non-comparable. One thing about the government document on preventing suicide in England is that it is based almost wholly on statistics, and risk is calculated in that way. For example, the noble Baroness cited figures suggesting that three times as many young men commit suicide as other groups. However, I think that that is highly unlikely to be true. I do not have the time to say why, but I think that it is highly unlikely. One must depend upon intensive studies of suicide and not just statistical ones.

One way of studying who has committed suicide is to look at those who attempt suicide in various serious situations. We had an interesting study of people who jumped off the Golden Gate Bridge in San Francisco. If someone jumps off that bridge he is almost certain to die—only about 3% survive. The study interviewed the survivors. It was interesting that on the way down, people were thinking, “I didn’t need to do this”, or, “I could have solved my problems”. What they said was very interesting. It was admittedly a small sample, because most people die, but they all said that it was the Golden Gate or nothing. In other words, the method that you use to commit suicide is very important, especially if you intend to do it seriously—there is a massive difference between most attempted and actual suicides.

Another study of the Golden Gate Bridge covered 515 people who were stopped from jumping. That was also interesting. One might imagine that people who really want to kill themselves will go on until they do it, but that is not so at all. In the study, of the 515 people, 95% were either still alive 25 years later or had died of natural causes. In other words, at least for certain types of suicide, if prevented at source, it does not recur. That has important implications.

In this country, some 20 people on average jump off Beachy Head each year—124 people died there between 1965 and 1979. A medical researcher who studied the details very intensively—this is why I am recommending intensive studies—concluded that 115 of this group were almost certainly suicides. To show the point that I was making earlier, only 58 were recorded as suicides by the coroner. That is a huge difference; it is double the rate. A lot of people who jump off Beachy Head are women, not men. Having read Preventing Suicide in England, a bit more lateral thinking would be in order, in recognising all the great work that the Samaritans do.

In my minute I must ask quickly, first, what is the Government’s policy on popular suicide spots? Are they all left to volunteer groups, such as at Beachy Head, where it is mainly a chaplaincy group that tries to stop people? It is very important to know because probably about 500 people a year die in popular suicide spots, which is about 4% of the total number in the country. That is pretty significant. I do not know whether the Government have a policy on that, but as the Golden Gate study shows, if you stop them, the vast majority do not come back to try again. Secondly, is there an analogue to the Live Through This project in the United States, which is pretty intriguing to me. It is backed by the American Association of Suicidology. Oh dear, I will have to stop, I suppose. It is transformational because it is a website for people who have survived serious suicide attempts. They speak out openly in a variety of media sources and communities. The idea is to strip away stigma and shame, and it is the first time that that has ever been done. There is a major input from people on a large scale who have attempted suicide, and there is a public-private partnership to support it. The main thing is that people who have attempted suicide have been seen as objects not subjects. In this case, they appear as subjects. I had a good third point but have no time to make it.