Tonia Antoniazzi
Main Page: Tonia Antoniazzi (Labour - Gower)(2 years, 4 months ago)
Commons ChamberRead Full debate Read Hansard Text
Katherine Fletcher (South Ribble) (Con)
I commend the hon. Member for Manchester, Withington (Jeff Smith) for bringing this really important matter to the attention of the House. He has made a wonderful speech that has stepped through lots of the dynamics in the debate.
This is a genuinely difficult topic. Many people present today want to participate in the debate and demonstrate their care, compassion and concern for the individuals at the heart of it. Indeed, that is one of the themes that I want to cover today. This is a funny place; it can be quite fraught, which might not necessarily be obvious to those observing us from outside this House. Members have to balance our compassion for an individual with the office that we hold and the responsibilities that that brings. Although I want to talk about a number of the points that the hon. Gentleman has made, I also want to highlight how difficult that trade-off can be.
Since I joined the House in 2019, I have sought, where possible, to find a way of speaking English in a normal way, and I shall try to do that on this topic. When I first pitched up here, I did not really understand the nature of the trade-off. Bills on topics such as this land at the heart of the matter, which is that this is not necessarily a particularly easy or comfortable thing to talk about. I will try to stick with what I promised and use some real-world examples.
With the House’s permission, I want to highlight the real-life experiences of one of my constituents in South Ribble, a redoubtable lady by the name of Joanne Griffiths. Joanne is a wonderful individual, but this is really about her son, who she calls “boisterous Ben”. Ben has great difficulties with his epilepsy and has struggled with treatment over the years, but before I start to highlight the case and understand how it pertains to the subject, let me give a bit of clarity. Joanne does not support the Conservative party. In the past, she has been on a leaflet with the right hon. Member for Islington North (Jeremy Corbyn). I am not trying to make a party political point; when MPs from whatever party are elected, we are here to support all of our constituents, and we take that job incredibly seriously—I want to put that on the record. She will never ever vote for me, but I will speak for her genuinely and honestly and in a way that is in her best interests. In these more febrile times, that is an important point to make, but let us get back to what is really important, which is Joanne and, more importantly, her son, Ben.
I want to put her efforts for Ben on the record, and the easiest way to do that is to quote her in her own words:
“It has been three years since the law changed, and I have spent four years fighting for access to what is very much the only medication to have any effect on my son’s hundreds of life-threatening seizures per day. Medical cannabis has transformed his life and gives him seizure freedom, and we do not wish any other parent or child in the area to go through what we have, and we are still suffering.”
When I was elected back in December 2019, as MPs we could get permission from individuals to act for them and we could take on casework from our predecessors. The complexities of the system mean that that often comes in printed paper form. I was given a large pile of handouts and one file, which must have been 1.25 inches thick. When Joanne says that she has been campaigning for four years, I can tell Members that she has been campaigning for four years. I did not so much pick up that file as weigh it. If any given set of paperwork can describe the emotion and the passion that the debate arouses, it is that sense of, “There you go! Congratulations, you’ve just won an election, you can help this lady and her family.”
Within that case file are letters and notes from Joanne’s meetings with her local MP, my predecessor. She has met Ministers, pressure groups and policy researchers. She has been a tireless campaigner. She even had members of my predecessor’s staff go with her to attend appointments with medical professionals. Reading that and reading all the correspondence, I can state confidently that Ben could not have a better mother. She is not a tiger mum; she is like a proper lioness defending her son. It is really important that I put my genuine admiration on the record today. She has fought tooth and nail for him. The question that I want the House to examine is: should she have to be that lioness of a mum?
Let me give the House the highlights of what Joanne has done over the last four years—this is by no means all of it. She has fought for medical cannabis to be legalised. She has met the Secretary of State for Health—and all Members of this House know that people do not suddenly turn up with that idea on a Tuesday and then it happens on the Friday; it takes a lot of time, effort and engagement. Along with others, she has helped to secure the legalisation of certain types of medicinal cannabis. She has fought her way through a system that is not really understanding of the issue in order to see a medical specialist. In 2019, through a private prescription, she got Ben prescribed the Bedica oral solution of 20 mg/1ml with 2% THC, and the Bedrolite oral solution 100 mg/1 ml with CBD at 10%, and less than 1% THC. Joanne said:
“For years now we have had to fund raise up to £2,500 a month to fund this medicine, use all our savings and borrow money from family and friends. We are on the verge of being broken both financially and emotionally due to the stress and with Covid, our fundraising options have all but been shut down. This is on top of running a local business whilst looking after a child with complex needs”.
That speaks for itself.
Let me turn to the efficacy of the treatment. Ben’s response to the treatment was recently described by the individual funding request panel, which the hon. Member for Manchester, Withington mentioned, as “exceptional” with
“demonstrable improvements to his condition”.
That is an independent third party effectively saying that the treatment works.
Joanne is still going, because she is still getting that private prescription. She has fought through the NHS system to see a specialist and get a clinical decision to agree Ben’s prescription, with the implication that it would be funded through the NHS, but that prescription has been rejected by the local CCG and hospital trust policy. The lioness mum that she is, she is now back in my inbox and in lots of other people’s inboxes, and is campaigning to understand what has caused the blockage in prescribing and what is happening. She has got the Secretary of State for Health and Social Care to instruct the NHS to review what is causing the issue and the blockages, so the questions are being asked at the highest level of the Department. She has also written to the Health Committee.
Tonia Antoniazzi (Gower) (Lab)
As co-chair of the all-party parliamentary group for access to medical cannabis under prescription, I know very well the person and child described by the hon. Lady. Joanne deserves better. Ben deserves better. I am so pleased that we are seeing through the party politics and that you have met Joanne, because this is a ridiculous situation. You are describing four years of hurt, pain and fighting of the lioness that is Joanne Griffiths, and yet nothing has been done. It really upset me, and I am glad that the hon. Lady is on side. You—sorry; the hon. Lady is on the Government Benches, and this situation has to change.
Katherine Fletcher
I agree with you—[Interruption.] Oh crap! I agree with the hon. Lady. [Laughter.] Might as well get something decent on the record! You can take the girl out of the north of England, Madam Deputy Speaker; I apologise profusely. I agree with the hon. Lady, but I think that there are some issues that prevent immediate “do something” action, and I want genuinely to examine them.
Katherine Fletcher
I will happily take another intervention once I have been through the issues, but I just want to continue to highlight what this lady, Joanne, is having to do. She has got the Secretary of State to ask the NHS what is going on. Along with other parents, she is still talking to the Chair of the Health and Social Care Committee, whom she and Ben previously met in his role as Secretary of State. As per the advice from the local CCG, she applied for an individual funding request for a prescription with a demonstrable improvement in boisterous Ben’s condition, but it was rejected. She appealed in July and won, but on 3 November, the appeal process was deferred awaiting clarification and more information.
As the hon. Member for Gower (Tonia Antoniazzi) highlights, that must feel Gordian—how can Joanne unpick that? She is still fighting and, as hon. Members would expect, I am supporting her. To the point that the hon. Member for Manchester, Withington raised, I have also written to the Secretary of State about participating in an observation trial.
The story is distressing. I cannot see any hon. Member who is unmoved and is not thinking about what they would do in a similar position. It is complicated and I find it hard to reconcile my personal distress.
Tonia Antoniazzi
The hon. Lady says that it is complicated, which it is, but we are now in a ridiculous situation. There is something or someone in the system blocking medicinal cannabis getting to those children. Three prescriptions are already being supported, so why can the others not be supported too?
Katherine Fletcher
The hon. Lady raises an important point, which I will come to. I think that those individuals are caught in a pincer movement between scientific proof and medical ethics. I am mindful of the challenge of the hon. Member for Manchester, Withington who asked if they cannot do it, what can they do. I will make some suggestions on that.
The distress is genuine and clearly felt on both sides of the House, but the specific definition of practical actions that address the situation is a problem. If hon. Members will forgive me, I will set out the events in order. Since November 2018, the law has allowed for prescriptions of medicinal cannabis, which is no small thing. It has been an illegal drug for a long time, and it is a Conservative Government who brought that in.
That prescription is now a legal tool in the armoury of qualified doctors. Prescription medicine is rightly the preserve of highly qualified and trained doctors. No one would want me wandering down the high street saying, “Oh you look a bit poorly today—go and have a bit of that.” It takes years of blood, sweat and tears. Ultimately, when doctors have completed that technical qualification, they take the Hippocratic oath. Today’s debate hinges on the interaction between the Hippocratic oath that doctors take as individuals on qualification—I am aware that not everybody swears on the same text—and the Government’s ability to feel qualified enough to influence, or seek to influence, doctors’ decisions. I think that is where the blockage is.
Tonia Antoniazzi
Again, the hon. Lady’s generosity in giving way is noted. On that point, is she trying to say that the prescriptions that have already been written privately by experienced clinicians are unethical?
Katherine Fletcher
The hon. Lady perhaps needs to let me make some of my points. She keeps asking me, but I am genuinely trying to get there.
Katherine Fletcher
I thank my hon. Friend for his intervention, and if I do not embarrass him too much, may I also thank him for his service in hospital during the covid pandemic? It is the strength of experience and the variety of experience on these Benches that makes sure, when we do put stuff through, that the laws of this country are scrutinised by people from different perspectives, and he is a great example of that.
Joanne position’s is that she is coming to me with Ben saying, “This doctor says he can have medical cannabis, and then I have another set of doctors saying, ‘Well, we need more evidence before we can prescribe it’.”
Katherine Fletcher
No. Would the hon. Member let me, honestly, make a bit of progress? I hope she does not mind; I think I have been very fair.
We have a loving family in a state of limbo, we have medical professionals deeply concerned about whether it is the right thing to do and whether it is breaking their Hippocratic oath to prescribe, and we have someone who is not remotely qualified to make this decision being asked, in effect, to engage in a medical ethics debate when I am not qualified to do so.
I want to turn to another aspect, and this may be the point at which I have to declare my biology degree and a distinct possibility that this might get a bit nerdy. I apologise for that, but geeks may take over the world. I think we need an examination of the other side of this issue: how do the scientists, whether or not they are medically qualified doctors, and how does science provide an evidence base that gives the doctors some confidence and cuts out all of the nonsense? Effectively, I am asking for the House’s forbearance on the topic of standards of scientific proof.
To recap, the families of the children, including Ben, believe, based on the evidence of their own eyes—a No. 1 eyeball—that medicinal cannabis has an enormously positive effect on the seizures; seizures that are so distressing. I do not want to keep walking away and making this a theoretical concept, because it is not.
The family have secured the support of two medically qualified individuals, but others believe that the scientific literature lacks the evidence base—as has been pointed out, we do not have the evidence base because we made it illegal for 50 years and it became legal only three years ago—to prescribe specific compounds and drugs. There has not been enough research to understand formally, in the gold standard of a double-blind trial, whether these cannabis medicines do work.
The hon. Member for Manchester, Withington talked about the availability of different formulations of this generic thing, with different strains and different levels and ratios of THC and CBD. He mentioned a trial and error process to get these very sick children and adults a stable medicine that works for them. If it was my child, in extremis and in an emergency, I would want to go through that process, but as I scientist I think that trial and error can lead to rally big problems. It is not good enough to say, “We think medical cannabis has worked, so we’ll give you 0.5% or we’ll give you 10%”.
Tonia Antoniazzi
The problem is that we have been having this discussion for many years—ad infinitum. The hon. Lady is standing here today painting that picture. Ben has already had every single possible licensed or unlicensed medicine through the NHS. This is the only one that makes his life incredibly better. It is not a miracle cure, but it gives him a quality of life that he deserves. So do those other children. There is more than anecdotal evidence out there. I think she is insulting the families by making that case today.
Katherine Fletcher
The hon. Lady is being unfair. Listening to my words, she will understand that I have that level of emotion about a very poor and sick child, but I am trying to find a way of helping him that does not potentially put other children at risk because we are giving something on anecdote. I remind her that thalidomide was thought to be fine. If we step away from—[Interruption.] I cannot hear her chuntering at me from behind a mask. If she wants to insult me personally, stand up please.
Tonia Antoniazzi
I would not personally insult the hon. Lady because I do not think that this place is the place to do it. I will happily have a conversation with her afterwards. The issue we have here is that the word “anecdotal” has been thrown around. None of the experiences and none of the work that has been done by many of the people involved is anecdotal. this is not anecdotal. It is not about ethics. It is about getting medicine to the children who need it because the situation is now intolerable.
Katherine Fletcher
The term “anecdote” means, within a scientific context, not statistically proven. While the emotion that the hon. Lady shows on behalf of Ben’s family and other families is important, it is also important to step back. If nothing else, the pandemic has shown us the power of science to find the right answers to solve problems.
Tonia Antoniazzi (Gower) (Lab)
I rise to support the Bill. I am very proud of the work that my hon. Friend the Member for Manchester, Withington (Jeff Smith) has done to break the barrier that is there. I commend the hon. Member for Dover (Mrs Elphicke); I know Emma Appleby and Teagan very well, and I listened with joy to the hon. Member’s words, which show her great understanding of the situation that Emma finds herself in for her child to survive. She is one of many parents we work with. As co-chair of the all-party parliamentary group for access to medical cannabis under prescription— with the hon. Member for South Leicestershire (Alberto Costa)—I am very proud of our work, particularly with the hon. Member’s predecessor, the right hon. Member for Hemel Hempstead (Sir Mike Penning).
This has been a journey. I have been in this House for nearly four and a half years, which is not a long time—I am quite a youngster by many standards—but I remember standing at the doors on a Friday, overhearing the conversations of peers from across the House. Basically, they were laughing at a Bill introduced by my late hon. Friend the Member for Newport West, Paul Flynn. It really did break my heart, because Paul worked tirelessly to break that barrier and get medicinal cannabis legalised. Soon after he passed away, we had a breakthrough thanks to the campaigning of the right hon. Member for Hemel Hempstead, the End Our Pain organisation and the tireless work of Hannah Deacon and Peter Carroll. Those people must be remembered in this House, along with the many, many parents and people working alongside them, as well as the hon. Member for Reigate (Crispin Blunt). Many people are fighting for the cause.
We are in a ridiculous situation, and I am very emotional. My hon. Friend the Member for Middlesbrough (Andy McDonald) has spelled out what it is like to be a parent and have that loss. I cannot even bring myself to imagine it. It does not matter whether you are a parent or not; to see these children is heartbreaking. It is four and a half years since I stood here incredulous at the mockery made of the Bill that was being brought forward. The law has changed; we have had three prescriptions on the NHS. We have had no other change.
I thank the Minister and the Secretary of State for our recent conversations about this situation. While there is a lot of empathy in this House, there is little action. I have stood with the parents and we have had many meetings here in the House. Members have gone to meet the parents and sometimes the children—most recently outside of the House because of covid regulations—to hear their story at first hand, and there is an empathy. But those parents and children have had to wait. They had to wait because Brexit was going on and they were on the back burner; they had to wait again because there was an election in 2019 and they were put on the back burner; and then there was covid, albeit nobody saw that coming, and they had to wait. They have been hospitalised, they have not been able to get hold of their prescriptions, there have been problems in fundraising to get their prescriptions and, as has been said, they have been unable to pay for their prescriptions, even having to sell their house. The situation they have been put in is inhumane.
I see that the hon. Member for South Ribble (Katherine Fletcher) is leaving, but I was going to pay tribute to her. I am so glad that she has engaged with this debate with her constituent Joanne and Joanne’s son Ben. It is wonderful that she has listened to them and continues to want to fight, even though she knows Joanne will not be voting for her, which is very amusing for us. It is good that there is that engagement. I do not stand here with a geeky knowledge of science, to use the hon. Lady’s words, or as a general practitioner, but I stand here with four and a half years’ experience—the experience of a mother—to see the passage of the tireless work that has been done across the House, only for nothing to have changed. That is why I pay tribute to the Bill.
Jim Shannon
The hon. Lady is right. If the Government are not minded to support the Bill, as it seems they may not be, does she, like me, ask, “Well if you’re not going to help, what are you going to do?”
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 Allin-Khan
My understanding and my belief, unless someone has an alternative proposal, is that clinicians are often screaming from the rooftops in the knowledge that their patients need this medicine. We are where we are, however, with only three prescriptions having been granted in three years. This Bill seeks to improve that and move us forward.
Families being forced to pay for treatment from private providers creates an unjust two-tier health system. A founding principle of our health service is that we do not believe that people’s access to treatment and services should be based on their ability to pay—it is as simple as that. The barriers in accessing medicinal cannabis are causing exactly that situation. We would not tolerate that for any other medication, so we should not tolerate it here. The Government must speed up and improve the availability of medical cannabis on the NHS and guarantee that patients across the country can access those products where appropriate.
We have all heard the testimonies of children who receive no respite from their seizures and of patients whose chronic pain has become a constant of their lives. Working in hospitals, I regularly meet those people and their families, who beg me and other doctors to help their loved ones. Witnessing their suffering never gets any less upsetting, especially when we know that there are options to alleviate it. Unrelenting pain can be so devastating for all involved. It is imperative that we listen to those who would benefit from access to cannabis-based products and allow them to guide our future thinking.
We have a voice in this place. I commend hon. Members from both sides of the House for using their voice today to speak up for those families who cannot be here to make the case themselves. Hon. Members have been begging, but we should not have to beg to do the right thing for the people who we serve.
Tonia Antoniazzi
Some of the voices that we have heard in the House today have talked about an unlicensed drug. The children who we have been talking about have been taking unlicensed drugs. I went to The Hague with two different families—two mothers—to pick up a prescription there before they could get it here. We walked into a pharmacy and picked it up, just as I would pick up my inhaler from Boots. There should be no fear. This is an over-the-counter drug in places such as the Netherlands, not an awful unlicensed drug that it is impossible to get. Does my hon. Friend agree that we need to break down that barrier and move on?
Dr Allin-Khan
As usual, I could not agree more with my hon. Friend, who makes a passionate and fair point.
The Bill serves as an opportunity to move forward in a way that even the sceptics could support. I say again that anyone who is planning to talk out the Bill should take a long hard look at themselves in the mirror and ask themselves what they are doing. They need to walk a mile in the shoes of the families who are worrying about whether their child will be alive the next day.
Last month, we had two debates on the issue in a matter of days. I would like to think that that demonstrates the collective will in the House to make progress, but that will and the warm words it brings are not enough for the thousands of people who should have benefited from those prescriptions in 2018 and since. We now need further action, and I wholeheartedly believe that the Bill would go some way towards achieving that. I trust that the Government believe that too.
Sally-Ann Hart
I am not a science geek. I would not even say that I was a legal eagle geek, but I do understand that primary legislation is very important in certain circumstances, but perhaps in this sort of situation it is not the right route to go down, because there are so many other methods that are perhaps better—methods where you involve the manufacturers, the doctors and clinical staff—
Tonia Antoniazzi
What has been put to the House today is a solution and a way forward following almost four and a half years’ work. Every single option has been explored, and it really disappoints me to see hon. Members from the 2019 intake talking out the Bill because they have been told to do so. All the Government want to do is kick the can down the road. That is not acceptable, and it is not a way forward. We all have empathy and sympathy for these families, so let us get something done and let us use this Bill to move forward.
Sally-Ann Hart
I thank the hon. Lady for her passion. The whole point of debates in this Chamber is to properly scrutinise proposed legislation so that we make the right decisions.
Sally-Ann Hart
I will give way in a minute.
We already have legislation and pathways in place. The Government have made big inroads on facilitating cannabis-based products for NHS prescription. We are on the path. Do you think primary legislation will force the hand of pharmaceutical companies or manufacturing businesses to bring forward products for clinical trials?
Tonia Antoniazzi
That is quite incredible. I invite every Conservative Member to join the APPG on access to medical cannabis under prescription, to understand better where we are. We are not in a good place. We have explored all the options, and this is not a request for big pharma to come in. I used to play rugby, and I have a friend who followed me in playing for Wales. She is a wonderful woman, and her child is now going on to Epidiolex because the family cannot afford to go on to Bedrocan. She knows she has to give Epidiolex a chance, but she knows it will not work and she is not being given the option because of the two-tier system this Government created.
Sally-Ann Hart
I agree on that point, and I wholeheartedly agree that we need to take more action to speed up the registering of prescription drugs, particularly if they are cannabis-based and there is an evidential base that they help many people who are in desperate need of that sort of medication.
The legislative changes presented in the Bill will not improve or expedite the development of the evidence required to support routine prescribing and funding on the NHS. I have raised the issue that manufacturing businesses and pharmaceutical companies need to come forward with their products for clinical trial. That is the most important thing.
I welcome the fact that the Government continue to support the establishment of clinical trials with NHS England and the National Institute for Health Research. From 1 April, a national patient registry was introduced to record patient outcomes. We talk about the amount of funding to do this or to do that, but we need closely to examine outcomes, because we need to know whether whatever goes in has a beneficial effect at the other end; that is vital, and we all have to take responsibility to ensure that it happens.
In recent years, there has been a lot of research into how medicinal cannabis can help epilepsy, mainly involving children with rare and serious epilepsy syndrome. Most studies have focused on CBD. The studies suggest that CBD may be an effective treatment for some rare types and hard-to-treat forms of epilepsy. There have been reports of side effects in about one in three people taking CBD, including drowsiness, reduced appetite and fatigue.
Most studies look at cannabis as an additional treatment for those who already take a number of prescribed epilepsy medicines, so it is difficult to tell whether cannabis works when taken on its own, and we have to be honest with ourselves about that. In addition, there do not appear to be any studies comparing medical cannabis with other medicines already licensed for treating epilepsy, so there seems to be no evidence—or not enough evidence—on whether medical cannabis is more or less safe, or more or less effective, than other epilepsy treatments.
Tonia Antoniazzi
I thank the hon. Lady for her generosity, but it is very frustrating to be sitting on these Benches and listening to what she is saying, because it is not true. The problem is that children have been dying, and these families have tried absolutely everything. The unlicensed drugs that children have had to take before they even had access to medicinal cannabis put them practically into a coma just to be alive; that is not acceptable. Please—I beg her to come and join the all-party parliamentary group, and to educate herself and her colleagues better.
Sally-Ann Hart
I thank the hon. Member for her intervention, but more clinical evidence is required on cannabis-based drugs. It is really important that that clinical evidence is there for everybody to see.
Sally-Ann Hart
I absolutely welcome that intervention from the hon. Lady. Thirty brain seizures a day would have a devastating impact on a child, but we also have to look at the cost-benefit analysis of the drugs that are being administered.
Tonia Antoniazzi
On that point, the cost of having a child at home on medicinal cannabis is a lot less than the cost of having that child in hospital. We have 20 children who are living proof of that. We have been asking for over four years for an observational trial of those children. That was agreed to by the NHS and then it was reneged on. There is RESCAS—the Refractory Epilepsy Specialist Clinical Advisory Service—but RESCAS does not work. I am afraid that the hon. Lady is not speaking with a clear and informed view. Unfortunately, that is stopping these children getting what they need today with this Bill.
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.