UK Parliament / Open data

Access to Medical Treatments (Innovation) Bill

My Lords, I declare an interest in that I would benefit personally if some medical innovation or off-label drug helped my MS problem. I would probably also benefit financially, because I would save hundreds of pounds on all the various vitamin pills and potions that I scoff liberally in the hope that they will make some sort of difference. Mind you, if that were to happen, the shares of Holland & Barrett would crash disastrously.

It is a pleasure to participate in a debate when so many excellent speakers have spoken before me and I agree entirely with every word they have said—all my noble friends and the noble Lord, Lord Murphy. In particular, I mention my noble friend Lord Ryder, with whom I passionately agree. Slightly to misquote my right honourable friend the Lord Chancellor, who was writing about a different issue in the past few days, we have an analogue system trapped in a digital age. Our regulatory system is like an old analogue system

which has not kept up to date with the latest scientific breakthroughs, and we need to change that soon—but not in this Bill.

What a pleasure it was also to listen to the noble Lord, Lord Patel. I wish that I had come to him to get some of the off-label drugs that I have been acquiring and testing out myself. No doctor here would prescribe them, but a friend of a friend who, I believe, may work in a major hospital in New York, was able to supply me with some, and I have been testing them out. It is all very well for people like me to be able to go through that back door—legitimately—to acquire drugs to test out. Most people in this country cannot do that, and we need a much faster system to try out off-label drugs, off-patent drugs and cocktails.

I congratulate my noble friend Lord Saatchi on returning to the charge once again with a revised version of his medical innovation Bill. When I first read it, I thought, “Where are all the sections dealing what is not negligence? We must put them back in”. As I said during the course of his Bill last year, I, and, I believe, 99% of those of us with a condition such as MS, Parkinson’s or the really terrible motor neurone disease are interested only in seeking new treatments which may make a difference to our condition.

When we see our consultants we ask, “What is the latest you have to tell us? Will that stem cell replacement work for me? When can I get it? What about that clinical trial you are now conducting at the National with three different drug cocktails? Can I try it?”. When I asked, the answer was, “No, David, the cut-off age is 60 and you are 61. Never mind, thanks for asking”. We do not go to our consultants with our ambulance-chasing lawyer in tow ready to sue if the innovative treatment does not work.

That is why I found it so disappointing last time that so many lawyers opposed the original Bill because they thought that it could limit their opportunity to sue for failure. Those of us who are searching for treatments which may help us could be deprived of such treatments because doctors—or more likely their health authority—were terrified of being sued. That is utterly, utterly wrong.

However I have listened to the advice of my noble friend Lord Saatchi and my honourable friend, the excellent Chris Heaton-Harris MP, who piloted the Bill through the other place. They say that the Bill before us today has universal support and all-party agreement. Apparently, even the lawyers are not opposed to it. If any colleagues were to attempt to amend it, we would jeopardise that all-party support and we might also run out of time when we return the Bill to the other place. So I shall not try to amend it at all.

The question for me is this: since the Bill now deals only with the database, is it worth while doing it at all? On reflection, I concluded that it is very worth while and, when implemented, there may be no need for a new definition of what is not negligence. Of course, there will be nothing to stop someone in future attempting to bring in a “What is not Medical Negligence” Bill, but it may not be needed.

Let me explain my thinking. One of the principal reasons which may be advanced alleging negligence is that the doctor attempted something innovative which

no other doctor has ever done before. It is easy for lawyers to then argue that it was negligent. He did not stick to normal clinical practice; there was no evidence base for his treatment; no one else in the world was doing it; and, therefore, per se, it was negligence. However, if we have a database showing that around the country, five, 10, 20 or 100 or more doctors were also trying that innovation, or something close to it, it cannot be argued that the doctor was off the wall and trying something dangerous, unethical and therefore negligent. Over time, with a sufficient database, we could get the ambulance chasers off our backs.

Furthermore, we need one easily accessible database. If one does a web search for example, as I did yesterday, of the latest MS breakthroughs, one gets hundreds of pages with a dozen hits on each page with studies published by the MS Society, half a dozen top UK hospitals and hospitals in Queensland, Dublin, Paris and a dozen in the USA—and that was only the first two pages on my screen. Then there are studies published in the Lancet, British Medical Journal, Neurology Today or Neurology Now, and countless other publications. It seems that every university medical research centre publishes its own research, then other journals publish other research and then disease-specific societies also publish research. Even a top consultant who specialises in research cannot find the time to search and keep up to date with the myriad organisations publishing research on innovative treatments. Therefore, a common database is vital. It may not be as sexy as legislating for medical negligence, but it is a more important step to pointing all doctors in the same direction with regard to expanding innovative treatment.

Therefore, I hope that the Minister will be able to reassure us that the Government will not waste a second in creating this database and that the funding will be found for it. At the end of the day, it will save the NHS a fortune. Hypothetically, a pill which fixes Alzheimer’s, for example, will save years of medical care and treatment. Finding cures using cocktails of already approved drugs or some of the 70,000 existing compounds that the noble Lord, Lord Patel, mentioned, is infinitely cheaper than paying the pharmaceutical companies to develop a very expensive new, patented one. On that note, I received a briefing note, as I suspect many noble Lords did, from the Association of British Pharmaceutical Industries, saying that, of course, it supports the Bill in principle, but that on the other hand there was nothing right about it. I hope that that will not derail this measure. It may not necessarily be my view, but a cynic would say that of course the association is opposed to it, as it has no interest in finding that a drug which is now out off-patent and dirt cheap may cure some other problem. It would prefer to invent a new patented drug for which it can charge what they like. Having said that, I pay tribute to our pharmaceutical industries for the innovation that they are doing; I wish that there was a faster regulatory system to get the drug to market faster and cheaper.

I have a few other points for the Minister. This database is for the UK only, or rather England and Wales. As soon as it is established and working properly, then I would ask that it be extended as soon as possible to research published in other countries, especially the

United States. I follow carefully every announcement made by the Scripps Research Institute in Chicago, John Hopkins hospitals, Mount Sinai and others in the USA. In some cases, they have made great medical advances faster than us, but in other areas we have made breakthroughs better and faster than them. Without straying into Brexit matters, it has to be said that Britain leads the world in medical research. If we only had as much money to throw at it as the Yanks have, they would not come anywhere near us in the amount or quality of research that we do. Therefore, it is vital for UK doctors to be able to rely on medical innovation happening in the United States, and their results have to be added to the database. Then we need to add other countries from around the world that are respected as medical innovators—or rather, their research findings are respected as legitimate.

I understand that the Department of Health intends to issue instructions or guidance to all doctors that they should submit information to the database about what has worked and what has failed. That is very important. However, I am worried about the term “failed” or whatever is used. Will that not give a green light to our legal friends to sue for negligence just because something did not work? As a non-lawyer, I feel that the concept of negligence is far too wide. Getting it wrong is not necessarily negligence, but I see too many cases where it is alleged that it is. We all hear of hundreds of cases where the NHS has made a tiny mistake, such as losing a patient’s pyjamas, and all the patient wants is a simple apology. However, because of the increasingly grubby trend of suing for everything under the sun, doctors and the health authorities are terrified of saying, “We are sorry we made a little mistake”, because they are afraid a lawsuit will be in the post. Therefore I would like to hear from the Minister what safeguards will be in place that will encourage doctors to record faithfully what has worked and what has not and will remove the threat of them being sued.

Finally, let me say a word about the timings for the remaining stages of the Bill. While I would like to have tried out some amendments, I will not now do so because this Bill is in danger of running out of time. Assuming that it gets a Second Reading today and a committal Motion, we will next look at it on Friday 11 March. However, this morning I went to the other place to see what was happening there and got a copy of its Order Paper. It is dealing with Private Members’ Bills today and on 4 March, and the very last day the Commons has to consider Private Members’ Bills is Friday 11 March, the same day that we will be coming back here to consider my noble friend’s Bill either to discharge the committal Motion or to do Committee and Report stages. I understand that we cannot have Third Reading on the same day. If we were to amend this Bill on 11 March and the Commons finishes on 11 March, the Bill cannot go back there for ping-pong and we would lose it. Therefore, I say to my noble friends, if anyone want to amend the Bill, please do not.

The last point I shall make is to the government Whip on the Bench. Please tell the Chief Whip that if we cannot do Third Reading on 11 March—at the moment it seems to be the last day we have scheduled for a Private Member’s Bill—can we please find another little slot for the Third Reading of my noble friend’s Bill?

I know that as a former Chief Whip it seems a bit hypocritical of me to plead for another day for a Private Member’s Bill because it will set a precedent and everyone will want their Bill taken, but since this Bill has had universal support in the Commons and is getting universal support here, I hope we can find time for a little formal Third Reading to get this Bill on the statute book.

I congratulate Mr Heaton-Harris in the other place on piloting the Bill through the Commons and getting unanimous all-party support, and I again congratulate my noble friend Lord Saatchi on returning to the charge and taking the Bill through this House. I hope and trust that neither time nor procedure will prevent its passage, and I commend it to the House.

1.48 pm

About this proceeding contribution

Reference

769 cc558-562 

Session

2015-16

Chamber / Committee

House of Lords chamber
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