Health Service Safety Investigations Bill [HL]

Lord Bethell Excerpts

2nd reading (Hansard): House of Lords
Tuesday 29th October 2019 Lords Chamber

Bill read a second time and committed to a Committee of the Whole House.

[Lord Bethell (Con)]

My Lords, I beg to move that the House do adjourn during pleasure to await the arrival of a Bill from another place. There will be a message on the annunciator showing when the House will resume.

Safety of Medicines and Medical Devices

Lord Bethell Excerpts

Thursday 28th February 2019 Lords Chamber

[Lord Bethell (Con)]

My Lords, I start by congratulating the noble Lord, Lord Carrington, on a really touching and thoughtful maiden speech. We are all hugely moved by memories of his father, and many here will remember him with great fondness. He was a man who embodied the values of the House: courage, professionalism, public service and, very famously, a strong sense of discretion. From the evidence of his splendid maiden speech, the new Lord Carrington should have no fear of following in his father’s huge footsteps. I am sure he will make a powerful impression on the House, particularly in his chosen fields of finance, the rural economy and the arts.

I thank the noble Lord, Lord O’Shaughnessy, for bringing this important debate to the House. I also thank the Library, which has produced a massive, 20-page blockbuster that tackles this technical subject with huge helpfulness. My main interest in the debate is in the area of drug development and the potential for a more agile approach to drug regulation. I am very grateful to those who have already spoken about medical paternalism and the growing scepticism of patients about medical and scientific authority.

It has been my experience of human nature that, when facing an adverse condition, people are prepared to suspend normal attitudes to risk. My father, the late Lord Bethell, suffered severely from Parkinson’s disease. I remember sitting with him in the office of the eminent Professor Tipu Aziz, a great expert in Parkinson’s. My father had avoided all contact with the medical profession for his entire life as an article of faith, but there was Professor Aziz suggesting that he wanted to drill a very large hole in the top of my father’s head and then inject his brain with an untested dopamine mixture. My father, a cautious man at best, thought this was an incredibly exciting idea and was 100% up for it. He was enormously frustrated when he did not qualify for the pilot. I think that is an indication of the changing attitudes that people have, as my noble friend Lord O’Shaughnessy mentioned, when they face medical adversity.

I must declare an interest as a trustee of the Scar Free Foundation. I shall tell the House another story: last year I visited the Centre for Conflict Wound Research, where I met members of the Casevac Club, which is like a modern-day World War II Guinea Pig Club. They are lending their bodies to medical research. There was an amazing veteran with no legs who had a massive scar across his entire torso. He was having a laser puncture his scar 400 times a second in a lattice formation on one side of his body but not the other, in an excruciatingly painful treatment, in order to get important data on the effectiveness of this new skin-healing process. I felt that this was an incredibly moving metaphor for the determination that some people show and the sacrifice that they are prepared to make for medical science.

My noble friend Lord O’Shaughnessy put it very well when he talked about those who live normal lives who expect a regime of safety. I want to talk about that. No one wants an uncontrolled Wild West approach to medical regulation. In fact, that would be utterly counterproductive to investment; I am aware that under certain circumstances when drugs are tested, early problems might prevent investment in later trials.

I highly recommend the report of the Panel on Monitoring the Social Impact of the AIDS Epidemic. That epidemic is fascinating, as the rulebook was essentially thrown out of the window in the mad dash for a cure, and there was essentially a patient mutiny. There was incredible progress and innovation, but there were also terrible mistakes. There were cul-de-sacs and snake oil, and less fortunate, poorer people did not get access to the right treatments. The financial costs were enormous, and the political pressure and risk tolerance were probably unrepeatable. I think we should try to learn the lessons of that episode.

I am very grateful for a briefing from Professor Derek Alderson, president of the Royal College of Surgeons, who talked me through its recent Commission on the Future of Surgery. Its report speaks about the rising use of medical devices and the urgent need for a unified national medical devices registry to make it easier to keep track of what products are on the market and to measure performance and issues. I instinctively lean away from new regulations and registers, and I am aware of the #WeAreNotWaiting movement, which some noble Lords may have followed. However, given recent experiences, which have been spoken about so touchingly by Members of this House, including the noble Lord, Lord Hunt, and the noble Baroness, Lady Cumberlege, it would be wise to support this measure. I was utterly persuaded by his argument, and I urge the Minister to move forward on these recommendations, as indicated in the words of Jackie Doyle-Price in another place earlier this month.

By way of conclusion, I want to make the case to the Minister for an energetic approach to medicine development and data generation that allows for early and progressive patient access to medicine. The European Parliament has handily called this “adaptive pathways”. For me, that phrase encapsulates a really good mixture of three essential ingredients: a thorough, data-driven approach to evaluation; a compassionate attitude to the natural human desire for cures; and a pragmatic recognition that patient feedback is an essential component of the research process. I am excited by the results of the European Medicines Agency pilot and by the UK’s accelerated access review, but my heart sank when I read about the slow pace of change. I urge the Minister to exert her considerable persuasive powers to put a red-hot fire under this process.

Healthcare (International Arrangements) Bill

Lord Bethell Excerpts

2nd reading (Hansard): House of Lords
Tuesday 5th February 2019 Lords Chamber

[Lord Bethell (Con)]

My Lords, I thank the Minister for her excellent introduction and her absolutely excellent maiden speech. I have known her since before she was an MP, followed her progress with absolute awe and grown to respect particularly her expertise in health technology—an area which is a huge opportunity for the country but will also need a lot of scrutiny from the kind of expertise found in this House. I look forward to many engagements on that subject.

On this legislation, I thank the members of the Home Affairs Sub-Committee of the EU Select Committee—the noble Lord, Lord Jay of Ewelme, and his fellows—for their excellent report. What I found striking was the great concern it expressed about the potential loss of existing reciprocal healthcare rights, the dangers of the cost to the NHS and the potential administrative burden, and the large amount of coverage that the report received in the press. It was a brisk reminder of how an overlooked area of policy and machinery of government which is precious to a lot of people needed to be focused on as we approach Brexit.

I was grateful to the noble Lord, Lord Thurlow, for his reminder of the costs of this area of government—it was an important point. I was grateful also to the noble Lord, Lord Lansley, for reminding us that, if we are to take away freedom of movement, we should perhaps get rid of such reciprocal rights—there is a sort of logic to that. I am here to reject both those arguments and to make an appeal in the opposite direction. I want to try just for a moment to extend the debate outside the Chamber, beyond Brexit and Henry VIII powers, to offer a little reminder of how many of the public might regard this as not only a healthcare issue but as one that touches on a subject that is very important to most of them; that is, travel.

Travel has changed dramatically in the public mind. It is not felt to be a luxury any more, as it was when I was a child. It is felt more to be a right and a form of expression; it is a part of one’s education, and it is critical to business. We can all wonder about the sense of entitlement among the modern generation, but I for one celebrate the benefits of travel. It satisfies the yearning to improve oneself personally and, among the business community, enables one to reach exciting new markets. In the context of this debate, we have not really talked much about the benefits of travel both to the country and to individuals. Underpinning that yearning for travel is a desire for frictionless, risk-free and affordable travel. The reciprocal rights that we are talking about are there to provide that kind of cover.

I do not think that there will be a massive change in the country’s mindset in respect of travel just because of Brexit and 29 March; if anything, quite the opposite. There has been a huge boom. Last year, Britons undertook 73 million trips overseas, representing an increase of 4% on the year before—that is a hell of a lot. That growth has gone on at a very steady rate for many years. That growth will go on into the future and we should think in policy terms about its implications. The range of destinations that people are travelling to is only getting wider.

People are also relocating in later life. We have heard a lot about the 190,000 people who have already moved to Tuscany, Provence and the costas, but that number is also edging up. We have to accept that we face the possibility of making provision for an ever larger number of people.

Some 27 million Britons already have an EHIC—the noble Lord, Lord Foulkes, showed us his; I thank him for that. We in my family have six of them; I do not have mine with me. I was staggered when I heard that the figure was 27 million. That is an unbelievable number. For a public policy to be quite so successful and to get through to nearly half the country like that is a huge achievement. There will be public policy professionals who are incredibly envious of that sort of penetration. There were 250,000 claims against those cards last year. Again, that is a daunting number—much higher than I could have imagined.

My appeal today is for us to try to think about this policy not just in terms of the daunting prospect of Brexit, the constitutional implications of the Bill and the cost, but through the lens of the macro changes that we see in society about people’s yearning to go overseas, to take their business and their families with them and to see other lands. We should think about future-proofing this overlooked part of our healthcare provision and accepting that we may need to extend those arrangements in terms not only of their geographical reach but of the sophistication of how we manage them. We should communicate a clear statement to British people and the outside world that nothing that happens around Brexit is about turning our backs on the world or closing the doors. Rather, we should show through our reciprocal healthcare arrangements that we will guarantee fair and reasonable treatment for people who visit Britain and support our own citizens who might run into difficulties when they travel abroad.

NHS: Healthcare Data

Lord Bethell Excerpts

Thursday 6th September 2018 Lords Chamber

[Lord Bethell (Con) (Maiden Speech)]

My Lords, I really am very happy to be here and give my maiden speech today. I thank the noble Lord, Lord Freyberg, for calling this important debate and for his powerful introduction. I declare an interest: I am a trustee of the Scar Free Foundation, which is a medical research charity.

I thank the staff and the doorkeepers who I remember for their kindness and warmth when I was a boy and used to sit on the Steps of the Throne. They would help me find my way around and sometimes give me sweets that they kept in the cabinet where they kept the signing-in book. Even now, when I am walking round in circles they help me, but they do not give me any sweets anymore, I am afraid to say.

I come from a family of campaigners. The first Lord Bethell was a Liberal MP, a radical who wanted to change the world. He was a self-made son of a gardener who campaigned for the rights of the disfranchised slum dwellers of Edwardian Britain. He was a fervent campaigner for temperance. My father, Nicholas, who some noble Lords may remember and who I miss greatly, campaigned for rights for refuseniks, for the mujaheddin against the Soviet Union. He stood up against authority. He fervently did not support temperance. It is my ambition to walk in those steps. I would like to use the House of Lords as a platform to campaign for a better world and to challenge authority when necessary.

But picking causes does not feel easy these days. The issues are not clear-cut and this debate is a vivid example of that. On the one hand, I am terrified of the threat presented by big data, which a number of speakers have mentioned. We cannot underestimate the co-ordinated, criminal enterprises that steal and blackmail with data. I have had my financial records stolen many times. I have had much money removed from my bank accounts and I am frightened. I am getting to know some of you better, but I do not want you to know what is in my medical records and I do not want to know what is in yours, so this is something for us all to be concerned about.

I am also worried about the sloppy, arrogant culture of the big tech giants. In my background, I have campaigned against the racism of the far right in Britain and we had to work very hard—it remains a work in progress—to try to get tech companies to take down horrible material from the internet that foments hatred and violence. Their stubbornness in this matter is legendary.

It would feel at first blush as though the campaign against big data feels like a Bethell-shaped cause to challenge authority, but there is an important dilemma here, because I recognise that modern medicine is providing incredible dividends. The costs of medical provision are increasing dramatically more than global growth, and in my own life, my family have benefited tremendously. My wife’s sight was saved in the Moorfields Eye Hospital and one of my daughters was saved by important new medical developments.

So how can we make these two join together? I met a Scottish health professional recently who told me about an algorithm he had written that dramatically improves the treatment of dementia and Alzheimer’s. He had done this by using the records of millions of patients in a huge mathematical exercise. Where had he done that? Five years ago, he moved to Beijing and worked closely with the Chinese Government. He was very complimentary about his British associates. He told me that they were helpful but just did not have the technology and permissions to do the work he needed to do.

I remember when my father had Parkinson’s disease. Hospitals would lose his files so frequently that we travelled with a ring binder with photocopies inside. I remember visiting an eminent professor of neurology at John Radcliffe University. We went into his office and it was an incredible sight. From the floor to the ceiling, there were piles of paper. Every single horizontal surface was covered in reports and folders. We were waiting for this make-or-break decision about my father’s treatment and the professor turned to us and said, “I’m terribly sorry but I seem to have lost your file”. That moment felt like a metaphor for where we are in Britain with medical records.

With an average age of 69, your Lordships have a remarkable reputation for longevity. I personally want to live until I am 100 and I want my children to live even longer. I cannot think of a better way to make the world a better place than achieving that kind of objective, but I do not feel that this will happen if we have a ramshackle approach to record provision. This was brought home to me through my work with the Scar Free Foundation. I got involved with it when one day at home, a guest dropped a cup of tea on my 6 month-old son. He was scalded dramatically down one side of his body. His mother’s side of the family is Chinese and has delicate skin; members of her family with similar scalds have horrific disfigurement and disability. My family is Scottish. We are tough and leathery—I do not scar at all. During my son’s treatment, it was ambiguous which way he would go. Would he recover well or not? I am pleased to say that he did and is in very good shape, but it shows the genetic difference between families in a vivid way. For our charity, trying to figure out what causes that difference and apply those lessons to scar treatments is critical.

The NHS spends £4.5 billion every year treating difficult wounds and scars. The full cost to this country of scarring and internal fibrosis is incredibly high. I recognise the opportunity for Britain. Others will explain much better than I can the implications for jobs and health outcomes, but I applaud the code of conduct put together earlier by the Minister, which I cite as a good example of the kind of cause that I would like to be involved with here in the House of Lords.