Medical Cannabis (Access) Bill
Debate between Kieran Mullan and Tonia Antoniazzi
Tonia Antoniazzi
Absolutely. I really want to know what they are going to do. This has been collaborative, cross-party work, and I have had good conversations with the Secretary of State this week and with the Minister a week ago. The solution that has been put forward to me is quite interesting. They say, “Oh, well you could find one of these drug companies that you know and work with, and maybe they could put an observational trial together, and we could have the conversations with the necessary bodies, we could work on this and then it could move forward”—this is the point I was coming to—“in another two to three years.” After four and a half years, we are already in a situation where some of these children are now adults, so we are going to be looking at another, completely different situation. This situation has to change.
My hon. Friend the Member for Manchester, Withington has worked tirelessly on the Bill, giving the Government an option to move this issue forward, yet yesterday I was told, “Don’t worry, Tonia; talk for as long as you like, because they’re going to talk it out anyway.” We have had debate upon debate upon debate. This is a private Member’s Bill. It would address the issues and move everything forward. That is the disappointment of this place. When the parents we work with know there is going to be a debate, they get all excited, and then nothing happens. Unfortunately, because of the way the parliamentary system works, that is how it is. That is why the Bill is so brilliant. It absolutely hits the nail on the head and I want it to pass—but we know that is unlikely.
We know there is a blockage in the system. I will not stand here and call out where I think that blockage is, but it is my personal view and my experience. It is what I have read and what I know. When somebody very high up in the system says, “We do not want this to happen,” it usually does not happen. There is a blockage, and that blockage has to be broken down. I am not a GP or a medical expert, but it is wrong that this is not being looked into properly.
In the conversations that the right hon. Member for Hemel Hempstead and I had with the NHS we were promised an observational clinical trial, but that had changed to an RCT by the time of our next conversation with the same people. Why? We had the perfect situation. These children were already on the medicine and were already proving that it makes their lives better.
Dr Mullan
I want to make it clear that we said there are approved and allowed uses of this treatment, and I do not doubt that it helps in some circumstances, but today we have ended up having a general debate about types of evidence, with Members almost criticising RCTs and pumping up observational trials as an effective way forward. I caution Members to remember that the MMR scandal, which we now know led to the deaths of children because of how medical practice was changed, was based on an observational study of a small number of people—[Interruption.] It is not rubbish; it is true. Those parents were absolutely convinced that the MMR vaccine had caused autism in their children. They were very passionate about it and, when we looked at it properly with a longer lens, we saw that it was wrong. Be cautious about talking down RCTs and talking up observational studies. [Interruption.]
Tonia Antoniazzi
I understand what the hon. Member for Crewe and Nantwich (Dr Mullan) is saying, but he is not making a like-for-like comparison. Rachel Rankmore and her partner Craig have looked after Bailey through thick and thin, and she has just sent me this message:
“We were told that Bailey may not wake up the Bailey you know because of brain damage from seizures and the very potent pharma drugs or not wake up at all the last time he was in hospital suffering 100s seizures before cannabis. He now lives an amazing quality of life out of hospital.”
She is furious about what has been said in the House today. The improvements they have seen in their child are being cast aside. Bailey would be dead if not for medicinal cannabis, and so would many others.
Tonia Antoniazzi
I will not give way because I need to make progress, and I said I would not take up too much time.
We got somewhere with the previous Minister, the hon. Member for Bury St Edmunds (Jo Churchill). She talked about the innovative medicines fund, and innovative medicine is exactly what this is. It has been around for a long time, and we do not have time to wait.
The Government need to set up a compassionate fund now, while the trials are happening, because these children will not go on to an RCT. They will not have the drugs flushed out of their system and take that risk, as happened to Bailey, who nearly died in a hospital bed. That is not going to happen, and we have to realise that this Bill and a compassionate fund for these children is the way forward, so that they do not have to lose their house and so they have the same access to medicines that others have.
We talk about intractable epilepsy, and they have tried everything else. From the risk-benefit analysis and the conversations I have had with clinicians, the benefits outweigh the risks in all these cases, which is why we are so strong and emotional about it. I do not want the Government to take us backwards but, in the recent conversations that I and my APPG co-chair have had with them, we have been told that we will have to wait another two to three years. That is unacceptable. We need to take the next step to move on. We are legislators, and the law has changed, but there have been only three NHS prescriptions—that must change.
I pay tribute once again to my hon. Friend the Member for Manchester, Withington for offering a sensible way forward. The children of the parents with whom we work deserve to live their best life. It is about time that the Government started to listen.
Dr Kieran Mullan (Crewe and Nantwich) (Con)
I welcome the opportunity to speak in this debate. I congratulate the hon. Member for Manchester, Withington (Jeff Smith) on introducing the Bill and highlighting the issue. I understand that he is trying to improve the situation for patients who are struggling, and I accept that he has the best intentions in that regard.
At the outset, I think we have to unpick some of the debate so far. We are talking about two different things, potentially: unlicensed and licensed treatments. Some of the criticisms that have been raised about lack of evidence are very valid in relation to unlicensed treatments, but not so valid in relation to licensed treatments; that is an issue about how we spread best practice. What we are talking about today affects a lot of the NHS and a lot of treatments in many different ways: how we test and evaluate treatments, the accountability of our doctors and other healthcare professionals, and how we spread learning and best practice in the NHS.
We have come an incredibly long way with testing and evaluating treatments in the NHS. I will try to give some of the history and the context of the challenge of knowing what good treatment is, because it is an enormous challenge. If people understood the history and how badly we have got it wrong on so many occasions, they might better understand why healthcare professionals can often be reluctant when it comes to unlicensed treatments.
The starting point is the time when medicine was practised almost entirely without evidence. It was practised for a very long time without what we would now consider evidence. Clinical medicine has evolved organically over hundreds of years, if not thousands, from a starting point at which even the concept of evidence-based medicine was alien. In fact, there were occasions when individuals who sought to advance the cause of understanding the body and disease were castigated for challenging established understanding, even in relation to the most basic things.
An old example that illustrates how fundamental the challenge of understanding good practice can be relates to handwashing. We all now take handwashing for granted as something that we should all do and that helps to keep us safe, particularly in relation to a pandemic, but that is largely down to the efforts of one man: Ignaz Semmelweis, a German-Hungarian physician and scientist born in Hungary in 1818. He died in an asylum in 1865 having suffered a nervous breakdown, ostracised by the medical establishment that rejected his theories, which we now know to be true.
Semmelweis looked after women giving birth at a Viennese hospital. He worked in two different clinics; one had a maternal mortality rate of about 10% because of the infections that women would get after giving birth, while the other had a maternal mortality rate of about 4%. The difference was so stark that women begged to be admitted to the second clinic because it was common knowledge that they were much more likely to die in the first.
Semmelweis noticed that difference and set out to understand it. He studied every detail of what was happening in each clinic, eliminating all possible differences, and discovered that the only major difference was the people working there. The first clinic taught medical students; the second did not. He combined that knowledge with the incidental finding that a friend of his who had pricked himself with a scalpel when performing an autopsy had become sick and died, in the same way as the ladies in the first clinic, of a general unwellness—germs were not even understood at that point.
Semmelweis theorised that the connection must be something to do with contact with bodies among people at the clinic who were looking after the women giving birth. He instigated what we now take as common sense: handwashing with a chemical for anybody who had had any contact with those bodies and who went on to look after the women. When he instituted that policy, the maternal mortality rate in the clinic fell to exactly the same rate as the other’s.
That theory is a landmark in our understanding of clinical medicine, but at the time it was considered extreme and Semmelweis was widely mocked. He was eventually dismissed from the hospital for political reasons, harassed by the local medical community and forced into an asylum; he ended up dying in terrible circumstances. That just goes to show how fundamental it is to doctors that we recognise that at various times medicine has got it very badly wrong in all directions. That guides a lot of what we do when we decide what treatments to give.
Sometimes our beliefs about treatment are based on an incorrect understanding of the nature of disease, false assumptions about how the body works or misconceptions about cause and effect. If people get better after treatment, we very often assume that the treatment helped, when often it was just incidental. We now know about the placebo effect, an incredibly powerful effect that generates improvements in patients without the benefit of any evidence whatever. From 1898 to 1913, a heroin-laced aspirin was available for the treatment of sore throats, coughs and colds, with a particular focus on it as a treatment for children; it was only in 1924 that heroin was banned completely as a treatment.
We still have a long way to go. Some research suggests that up to half the treatments we use even now lack what we might consider a full and reliable evidence base. Importantly for this debate, we can be badly wrong not just in identifying an effective treatment, but in understanding its side effects in the longer term. I have listened carefully to the descriptions of benefits for individual patients and I do not deny in any way, shape or form that they are benefiting, but when we aggregate that across the whole population, we can discover side effects, particularly in the long term, that we are simply not aware of when considering the benefit for an individual patient.
There was some criticism of my hon. Friend the Member for South Ribble (Katherine Fletcher) for raising this example, but I had planned to raise it, too. People will have heard about the thalidomide scandal. That is important not as a comparison with a particular side effect, but in understanding how we get things wrong with medicine. Thalidomide was licensed in July 1956 for over-the-counter sale. No doctor’s prescription was even required in Germany. By the mid-1950s, 14 pharmaceutical companies were marketing thalidomide in 46 countries and, by 1958, that included the UK. A UK Government warning was not issued until May 1962 and, in the intervening period, the drug was responsible for a wide range of birth defects in children who would otherwise have been born healthy.
Fen-Phen was a weight-loss drug used in the 1990s. It is estimated that as many as 6.5 million people took it. People taking it experienced heart disease, lung and pulmonary problems, and millions of pounds in compensation was paid out to people who took it after it was withdrawn.
Vioxx was taken off the market in 2004 after having been available for five years. That is considered to be one of the largest drug recalls in history. Vioxx was given to more than 20 million people as a painkiller for arthritis, but was later found to be responsible for an increased risk of heart attack and stroke. The Lancet reported that as many as 140,000 people could have suffered from serious coronary heart disease from taking this drug in the US alone. One study that I reviewed in anticipation of this debate found that 462 medicinal products were withdrawn from the market between 1953 and 2013 alone. This provides an important context for our discussion in terms of medicinal safety.
Modern clinical training teaches us how easily we can get our understanding wrong, how it can change and how difficult it can be to really understand the short and long-term benefits and harms of a medicinal treatment. We have a much more sceptical, vigilant workforce in healthcare as a result, and we must not be quick to rush to judgment when there is uncertainty about a particular treatment. We have come a long way with bodies such as the MHRA, NICE and others that attempt to support clinicians in making evidence-based decisions, because we realise that leaving it to the individual clinician is not necessarily helpful.
Tonia Antoniazzi
Do I understand the hon. Member well in thinking that he is saying that medical scientists do not know anything? We have allowed these children to have the medicinal cannabis. Is he saying that the scientists are wrong?
Dr Mullan
I encourage the hon. Lady to listen carefully to what I am saying. I said at the start of the debate that, absolutely, there are very good reasons for individual patients to receive this treatment. I have acknowledged that there are licensed treatments based on evidence, so I think she is kind of misrepresenting what I said. I said clearly that I am giving context to the—
Tonia Antoniazzi
I thank the hon. Gentleman for his generosity in giving way again. This debate has been had in the House for many years. We have spoken about it a lot. I would like to extend an offer to him and other hon. Members to join the all-party group on access to medical cannabis under prescription and to educate themselves.
Dr Mullan
With the greatest possible respect, I do feel that I understand the challenges that the hon. Lady is talking about. I will go on to answer her question about the fact that we have talked about it for a long time, so how do we move it forward? As I will explain, unfortunately, that applies to a very wide range of treatments and clinical practices in the NHS and across the world. This is about the appropriateness of picking out one specific area of clinical practice and using primary legislation as a way to overcome one particular problem. That is my concern.
Tonia Antoniazzi
I thank the hon. Gentleman for giving way. The hon. Member for Great Grimsby (Lia Nici) makes a valid point. We have asked for a pot of money. We went to the Department of Health and Social Care. The hon. Member for Bury St Edmunds (Jo Churchill) was on the verge of organising it and getting it sorted so that we could have that pot of money. The Bill was the next option, because that option was no longer available when she was replaced as Minister. What next? There are 20 families, and hundreds more, who need something to happen. Inertia is not what we want. We have to move on. What is being done by the Government?
Dr Mullan
I am not familiar with the discussions the hon. Member may or may not have had—I am sure the hon. Member did have them—with the Government in relation to pots of money. Again, I will gently say that there are enormous pressures on NHS budgets. That is why we have NICE, for example, to take out some of the emotion and personal feelings people have in relation to clinical care, and to try to look objectively at what secures value for money. I am not aware of what work the Department may have done on whether this represented an equitable use of resources for this particular area of clinical care. I will be happy to write to the Minister and make inquiries, as I am sure Opposition Members and the all-party group have done.