Medical Innovation Bill [HL]

Debate between Baroness Gardner of Parkes and Lord Winston

Friday 23rd January 2015 Lords Chamber

[Lord Winston (Lab)]

My Lords, I shall not detain the House for great length. The amendment in my name and that of the noble Lord, Lord Saatchi, addresses patient safety, an issue which is dear to this Government. One of the concerns expressed again and again throughout the Second Reading and Committee stages of this Bill, and subsequently, has been that some patients might in desperation, for various reasons, seek treatment which is innovative but not properly regulated or properly justified. Particularly in the private sector, patients might be tempted to go into treatments which seem attractive but perhaps are overadvertised as sensible. In the end, they may be more futile than more recognised treatments that may carry known side-effects or perhaps be more frightening. I think that that is the case for cancer in particular.

This amendment is designed to make sure that any treatment given under this Bill would get broad support from responsible medical practitioners. There would be an onus, not only on the person doing the treatment, but on the person responsible for advising that the treatment was reasonable to the operator, the medical practitioner concerned. This would fall within that area. Essentially, there would be a legal onus, a responsibility, for that adviser to give advice which was regarded as serious and acceptable to a broad body of medical opinion in that field. That is the essence of this amendment, which we have discussed.

I am delighted that the noble Lord, Lord Saatchi, has agreed to put his name to this amendment. It is helpful. I hope that it will not prevent people participating in trials, particularly in cancer medicine. I also hope that it will make sure that private medicine is carried out responsibly. We all have reservations about this Bill but it covers most of the issues about which we have been concerned. I am concerned about reproductive medicine because I fear that that is now in a burgeoning private area. It worries me still that quite a lot of reproductive medicine done in the private sector is not properly validated and that patients are paying very heavily for it. Beyond that, broadly speaking, this is the amendment that I would like to see on the statute book. I therefore beg to move.

[Baroness Gardner of Parkes (Con)]

My Lords, I am slightly concerned about the wording of the amendment because I would not want it to become a way of dragging things on forever. How do you decide what is,

“a representative body of responsible medical opinion”?

To lay people such as myself, there seem to be heaps of medical bodies and I wonder how that would be determined. I would be interested to be satisfied on those points. The speech of the noble Lord, Lord Winston, was clear that he does not intend the amendment to represent any of those matters, but I would like someone who is more of an expert on the wording of these things to assure me that it would not be only a preventative technique.

Medical Innovation Bill [HL]

Debate between Baroness Gardner of Parkes and Lord Winston

Friday 12th December 2014 Lords Chamber

[Baroness Gardner of Parkes (Con)]

My Lords, I do not really understand the proceedings, in so far as the noble Lord, Lord Winston, spoke only to two of his amendments. These are all grouped together. I have just consulted with the clerk, but they should really have all been covered. I do not know whether he intends to find some way of coming back to it, but I thought we could speak only once on these things on Report. I am particularly interested in the exact meaning of his Amendment 13. I seek information on this as I read it: would Amendment 13 possibly prevent people using new innovative stem cell treatments, for example? What is the intention of Amendment 13? As he did not speak to either Amendment 12 or Amendment 13, I feel that the House should be informed as to what he means by those amendments, as this is the only opportunity to discuss the group that has been put together.

[Lord Winston]

Before the noble Baroness sits down, I wanted, for clarity, to speak to two amendments at a time. I will speak to Amendment 13 in due course and say exactly what I meant. If the noble Baroness wishes me to speak to those amendments now I will do so.

--- Later in debate ---

[Lord Winston]

I am now totally confused but, if I may say so with great politeness, it sounds as if I may not be the only person in the House who is confused. The key thing here, which applies to both these amendments, is the question of patient safety. Amendment 2 argues that wherever “responsible medical opinion” regards that patient safety might be compromised, that needs to be considered in the Bill. That is an important issue and would certainly include the use of stem cells in particular, for the reasons that I have stated.

I was going to refer to a few medical examples where in fact innovations have been done without proper scrutiny. For example, Dr Smith felt that she could inject tuberculin into the spinal cord; the result was in fact disastrous for those patients. The noble Lord, Lord Walton, thought that this was a very good example. What was reported was that the tuberculin recipient had constitutional illness with meningitis, more alarming complications from their nervous system, vomiting, retention of urine, dysphagia, dysarthria, and a whole range of other symptoms which were actually made worse. It was a scandal at the time and a very good example of where, if you have innovation which is not properly controlled, there is serious risk.

I found it quite amusing, by the way, that the lady at Oxford, Dr Honor Smith, was the daughter of a Member of this House. She was the daughter of a Baron—so, technically, she was the honourable Honor Smith. However, I do not think that she ever used that title.

This came up again in the House of Lords later on when the noble Lord, Lord Brabazon, supported a quack treatment in 1995 of a Dr William Crofton, which was also for neurological disorders and used something rather similar. One of the problems was that people with these neurological disorders, which as we know are terrifying and untreatable, flock to practitioners in the hope that they may have an unsuccessful condition successfully treated. That is still a real issue for us all in this House.

In response to the honourable Sarah Wollaston, the Member for Totnes, in the other place this week, the Under-Secretary of State for Life Sciences at BIS, who was replying on behalf of the Government, mentioned that the Government were determined—let me get the exact quotation for the record, if I can find it in Hansard. In answer to the debate on this Bill, he said:

“I reassure the House that the Government are committed in all this work to putting patient safety first and developing a landscape of evidence-based medicine”.—[Official Report, Commons, 9/12/14; col. 850.]

I suggest to your Lordships that the Bill does the reverse. It tends to risk patient safety in certain cases where patients are desperate for a treatment. It will also reduce the chance of evidence-based medicine.

I thought about this long and hard last night. I must tell the noble Lord, Lord Saatchi, that I did not sleep last night. I woke at about 1 am, having gone to bed at 12.30 am, and could not sleep for thinking about the Bill. I understand that he has been extraordinarily courteous and very gentle in introducing the Bill. He has also been very helpful in trying to ensure that the Bill is as safe as possible and very good at listening to our concerns. I understand, too, that he has had a great tragedy that has made him feel very strongly about this issue. I fully understand and deeply respect that, and I wanted to tell him something about myself, which he may not know.

When I was not yet nine, my wonderful, amazing, chess-playing, musical instrument-playing, polymath craftsman father died. He had a minor infection that was treated by an innovative antibiotic which was quite inadequate. He then had an innovative removal of a chest drain too early, so that he developed an abscess in the pleural cavity. Finally, within six months he had an innovative operation, which was not evidence-based, in which his brain was opened and an abscess removed. This man of 42 died, leaving my mother desperate and financially destitute. I was the eldest of three children; I had a sister aged four and a brother aged three. My mother was amazingly in love with my father, so I know something of the tragedy of seeing what happens when somebody is destroyed in front of you. I do not take this as an issue that leads me to oppose the Bill—that is not the case at all—but I am very concerned that we should not use innovation where we might compromise patient safety.

One of my concerns is that we often think of the National Health Service as a football. I take strong objection to my own side when it says that it is the only side that wants to support and protect the health service. That is nonsense; we all want to protect the health service and to see a health service that is efficient. Unfortunately—and I say “unfortunately” because I mean it—at the next election, I know that the health service is bound to be something of a political football. These issues are going to come up and therefore I want to make certain that we have the chance to innovate in a responsible way. Ultimately, I am not convinced by the arguments that the noble Lord, Lord Saatchi, has put forward. There are cases where treatment that is authentic and should be offered will be compromised in response to patients who are so desperate that they are prepared to try anything which has not been fully, or even partially, tested. For that reason, I beg to move Amendment 2—and I have spoken also to Amendment 13.

[Baroness Gardner of Parkes]

My Lords, I was particularly keen to hear the explanation of this amendment because the more I read it, the less I understood it. I would appreciate clarification from the noble Lord because I did not, and still do not, understand whether by putting this clause in on this sort of thing, we might be preventing treatment for that man who has just walked in Poland and the people who can suddenly see again because of the treatments for their eyes. If we tend to bottle this up completely, it would mean that all the marvellous advances which have changed people’s lives completely might be slowed down by this amendment. Now, if I am wrong in that, that is a different matter.

The noble Lord, Lord Winston, spoke very movingly about his own personal circumstances. However, where I disagree with him is when he talks about these desperate people who will try anything. That is one of the issues that the Bill is designed to help with. It covers only the cases of people who are already in a terminal condition. The one thing that many of these people do not have is any hope of progress, and in most cases they are willing—certainly in the cases requesting this sort of innovative treatment—to take the risk with what is only a very short piece of life remaining, in the hope that either the treatment might cure them or it might do something to advance research at a faster rate and therefore help other people in the future.

Reading this amendment, I was not clear whether it was pro-advance or anti-advance. As I say, I am still not clear. As it stands, I have grave doubts about supporting it; I think it would take away hope, which is about the last thing that remains for a lot of people.