(Urgent Question): To ask the Secretary of State for Health and Social Care if he will make a statement on the return of medical cannabis that was seized from Emma Appleby at Southend airport on Saturday 6 April and which is needed to treat her very ill daughter Teagan’s extreme epilepsy, and to take steps to make sure that medical cannabis is available for prescription around this great country.
My sympathies go out to the patients and their families who are desperately seeking to alleviate their symptoms with medicinal cannabis. We are working hard to get the right approach. The law was changed on 1 November last year to ensure that it is now legal for doctors on the specialist register of the General Medical Council to prescribe cannabis-based products for medicinal use in the UK.
Whether to prescribe must remain a clinical decision to be made with the patients and their families, taking into account the best available international clinical evidence and the circumstances of each individual patient. Indeed, prescriptions have been written for the products that the family attempted to bring into the country and these have been supplied to patients. Without clinical authorisation, it is of course not possible to import controlled drugs, which is why the products were seized by Border Force on Saturday. However, we have made available the opportunity for a second opinion and the products have been held but not destroyed, as would normally be the case.
In relation to childhood epilepsy, the British Paediatric Neurology Association has issued interim clinical guidance. NHS England and the chief medical officer have made it clear that cannabis-based products can be prescribed for medicinal use in appropriate cases, but it must be for doctors to make clinical decisions in the best interest of patients, to balance the risks and benefits of any proposed treatment—including cannabis-based products—and to make a decision with patients and their families on whether or not to prescribe.
To date, research has centred on two major cannabinoids, tetrahydrocannabinol and cannabidiol. There is evidence that CBD may be beneficial in the treatment of intractable epilepsy, and over 80 children have already been supplied with CBD products in the UK on the basis of a specialist doctor’s prescription. I entirely understand how important this issue is to patients and I have met and listened to families. I know just how frustrated they are. Therefore, after meeting parents, I have taken the following actions.
First, I have asked NHS England rapidly to initiate a process evaluation to address barriers to clinically appropriate prescribing. Secondly, to improve the evidence base and to get medicinal cannabis to patients in need, I have asked the National Institute for Health Research and the industry to take action to produce that evidence in a form that will support decisions about public funding. The NIHR has issued two calls for research proposals on medicinal cannabis and I look forward to the responses to those consultations. That is in addition to the training package being developed by Health Education England to provide support to clinicians to enable them to make the best decisions with their patients.
This is a very difficult area, with some heart-rending cases. I look forward to working with all Members of this House to ensure that patients get the best possible care.
I thank you for granting this urgent question, Mr Speaker, on behalf of constituents around the country who need help from medical- prescribed cannabis, and I thank the Secretary of State for coming to meet the families and their loved ones who feel that medical cannabis on prescription may help.
Some of these young children—though we are not talking only about children—have 300 seizures a day. They are given drugs that do not seem to work at all. There is not a cure, but these medical oils can and often do reduce the number of seizures. Many colleagues in the House will know of the case of Alfie Dingley—the only young boy that has an NHS prescription for the medical use of cannabis oil. He is now a relatively naughty boy. He has learned to ride a bike. His sister has a brother she has never really experienced before.
This is not a cure, but these parents are absolutely desperate. When the Government did the right thing and changed the law, they thought the situation was going to get better. In my capacity as joint chair of the all-party parliamentary group on medical cannabis under prescription, I warned them that this was just the start of the journey, and that it would be a long one.
Anyone who saw the footage from Southend airport at the weekend—any father, any parent, anyone who has a loved one in their family who suffers—would understand what that family were trying to do. Cannabis had been prescribed by a consultant abroad because it could not be obtained in this country. Many families are relying on charity to raise the money—in some cases, £1,500 a month—to obtain it on prescription. As the Secretary of State knows, prescriptions are being issued by the relevant experts, but the clinical commissioning groups and the trusts are refusing to honour those prescriptions. It is a disgrace that that should happen in this country, and we should all be ashamed.
I welcome the trials and I welcome the review, but, sadly, people need these medicines now. Can we unlock the door? The Border Force staff at Southend airport were very polite and very helpful. They thought they were doing their duty. We should do our duty, and get that medical cannabis back to Teagan.
I pay tribute to my right hon. Friend and the all-party parliamentary group for their work in bringing this issue to the attention of the House and the country, and in supporting the parents involved. My right hon. Friend has been characteristically emphatic and reasonable in providing that support, and I entirely understand his concern. Meeting some of the parents as part of the APPG delegation was a very emotional experience.
Of course the Border Force staff were doing the right thing—and I am glad that they were doing it in a reasonable way—according to the existing rules, under which if a controlled drug is to be imported it needs a licence, and the import of an unlicensed controlled drug therefore requires a prescription from a specialist doctor. There are just over 95,000 registered specialist doctors in the UK. Any one of them who has the relevant experience can prescribe the drug, and it will be then allowed in. That can happen now. The guidance is not a barrier, and it is not a barrier to prescription. However, it is clear to me that this process is not working. I have therefore initiated a process evaluation, which is NHS language for looking at exactly why it is not working and what we need to do about it.
It is shameful that we saw those scenes at Southend airport, and that families continue to suffer because the arrangements are so slow. It is, however, appropriate that we are discussing this issue on the day on which my hon. Friend the new Member for Newport West (Ruth Jones) has taken her seat, because her predecessor, my friend Paul Flynn, was an indefatigable campaigner for many important causes, including the legalisation of cannabis for medical use.
Last year Charlotte Caldwell, the mother of another sick child, Billy Caldwell, said:
“It’s absolutely incredible, it’s amazing. The compassion and speed that the Home Secretary has moved with is just incredible.”
That is the impression that Ministers sought to give, but it was a misleading impression, as the plight of the Applebys revealed this weekend.
Is the Secretary of State aware that cannabis oil is not the same as cannabis, and that it has no psychoactive or addictive effects? Is he aware that in other jurisdictions a range of conditions qualify for treatment with cannabis oil and related products, including cancer, AIDS, muscular dystrophy, Crohn’s disease, epilepsy, Parkinson’s disease and arthritis? Is he aware that the Home Secretary has previously commissioned Sally Davies to examine the scheduling of cannabis as a whole? She reported as long ago as June 2018. Is the Secretary of State aware that Ms Davies’s report has been with the Advisory Council on the Misuse of Drugs since that time? Is the House to understand that the Home Secretary has just been sitting on it?
What is the Secretary of State going to do to speed up the processes around this issue? Parents will not be impressed to hear of further reports or further enquiries. We need to resolve the Appleby case quickly, but we also need to make sure that no other families of sick children have to suffer in the way the Appleby family is suffering.
I did set out the answers to those questions in my initial response. There are a number of smaller active agents in medicinal cannabis, but there are two major ones: THC and CBD. The vast majority of those who now have access to medicinal cannabis have access to CBD, and that is different as an active agent. Clinicians have to make a judgment according to the personal circumstances and needs of the patient, and I am trying to remove all the barriers to those clinical decisions.
We have taken action. I absolutely understand the history here, because the Home Secretary and I signed off on the decision to allow medicinal cannabis to be available at all on 1 December, following the chief medical officer’s report. What we need to do now is ensure that there are no further barriers to prescription where a clinician judges that that is the right thing to do.
My right hon. Friend will be aware of the case of my constituent Indie-Rose Clarry. She is a four-year-old girl who suffers from Dravet syndrome, a very severe form of epilepsy. Her parents, Anthony and Tannine, are also crowdfunding on the internet to raise thousands of pounds to buy drugs from Holland. That is not because they are criminals, but because they love her, they want to ease her pain and they are desperate.
On Friday, as it happens, I met Indie-Rose’s consultant—not only her consultant but one of the leading specialists in the country in severe forms of child epilepsy. He made the point that there is a barrier to prescribing cannabinoids that include THC, because there is insufficient evidence in that case. Will the Secretary of State confirm that there is evidence on CBD but not THC, which Indie-Rose’s parents have found has the greatest impact in reducing seizures?
Characteristically, my hon. Friend makes an excellent point. The clinicians consider that there is a much less evidence on THC, as opposed to CBD. I have therefore instructed the National Institute for Health Research to do the research. Doing the research will of course require some cases where the drugs can be legally tested. I had already put that in place, and I am telling the House about it today.
I am glad this urgent question has moved from the Home Office to Health, where it should be, but one has to ask why drugs are being seized when they are no longer illegal—that is what changed in November.
In medicine, we use many controlled drugs, such as heroin, morphine, ketamine and diazepam which have a street value, but that has never stopped them being used in medicine. The problem is that the way cannabis was treated for 50 years means we have had almost no research and almost no experience.
The problem is also that expectations were raised in November, as if every GP would be able simply to write a prescription, but a prescription for what? We have to have a pharmaceutical quality of drug so that we know exactly how much CBD and how much THC we would be prescribing. That is not yet generally available. It is important that we look, through the Government, to get that pharmaceutical grade licensed, with reliable formulations.
This issue is under inquiry in the Health Committee, and we have heard from patients who were advised to go to Holland to get drugs, costing them £30,000 per visit. That is unacceptable. The Government will have to stimulate research, and I am grateful that calls for research are going to go out. However, we need specialist centres in paediatric neurology for children with epilepsy, we need adult neurology for multiple sclerosis, and we need pain specialists for chronic pain.
These preparations are unlicensed; that means there has been no testing on their efficacy—whether they work—and on whether they are safe. That is quite scary for doctors, particularly as if it is an unlicensed drug, they have to sign a form to say that they accept personal liability. I can tell the House that that is quite intimidating, as I have done it myself. The Government need to push for centres of excellence to help to stimulate the research they say they are calling for. That is the only way we will get randomised controlled trials, and get the answers that will lead to these drugs being licensed, rather than our just having a temporary fix for now.
In an outbreak of cross-party unity, I agree entirely with the hon. Lady. The approach she has taken is incredibly sensible; it is also the one that has been recommended to me by my clinical advisers. We need to ensure that we take an evidence-based, pharmaceutical-grade approach to prescription. I will take away her idea about centres of excellence, because I entirely see the point there. In the case of most drugs, it is the pharmaceutical industry that pushes for, and pays for, the randomised controlled trials. In this case, because the industry is in a different shape for other reasons, it is we who are making this happen, and we are pushing it as fast as we can
I would like to thank my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) for bringing this question forward, and I thank the Secretary of State for his answer. My constituents the Levys came to see me about their daughter, Fallon, who has LGS epilepsy. Her consultant neurologist has told the family that
“the actual logistics of the prescribing has not yet been worked out”.
Why is this the case, and what can be done to ensure that Fallon has access to the necessary medication as soon as possible?
I should like my hon. Friend to write to me with the exact details of that case. The process for prescription by someone on the specialist register is well trodden; it is used for all sorts of unlicensed drugs, and it should be available. We are making a second opinion available to ensure that it can be brought to bear in cases such as these. I am interested in hearing about specific cases—this applies to everyone, not just to my hon. Friend—so that we can ensure that the appropriate clinical decisions can be made.
I warmly welcome the measures announced by the Secretary of State today, but will he go further in discussing the importance of clinical trials and answer some of the many questions about striking the right balance between THC and CBD? We have heard in the Select Committee that some pharmaceutical companies are refusing to make their products available for clinical trials. Will he look specifically at that point? We need to ensure that safe and consistent products are regularly available and that they are of a predictable pharmaceutical grade, as we have heard.
If I may, Mr Speaker, I would like to add to my previous answer by congratulating my hon. Friend the Member for Watford, the former Business Minister, on all that he did to support business, enterprise and the case for capitalism while he was in his former job. I regret his departing from the Government, because he was a brilliant Minister.
On the question ahead of me, so to speak, the Chair of the Select Committee, the hon. Member for Totnes (Dr Wollaston), is right to say that it is vital to bring forward these clinical trials, and that the pharmaceutical companies that provide the oils have not pushed forward the trials in the way that would normally happen. We have therefore stepped in to try to make them happen, but we do need the calls to be answered.
The Secretary of State talks about removing barriers, but it is clear to me that the main barrier is the British Paediatric Neurology Association itself. When its president came to give evidence to the Health and Social Care Committee a couple of weeks ago, he was arrogant, he was dismissive of the families’ experience, and he misled our Committee by denying that Members of this House had sought a dialogue with him, which he had refused. What is the Secretary of State going to do to remove the obstacle of the BPNA?
I am sure that the BPNA will have heard that testimony from the right hon. Gentleman. Of course, the BPNA is independent of Government, and we have to follow the clinical judgments made by the relevant organisations, whether a royal college or, as in this case, an association. What I have done is ensure that a second opinion is available, because the BPNA guidance is merely guidance; it is not absolute. A clinician on the specialist register can make a decision according to what they think is best for the patient in front of them.
There are lots of warm words circulating here today. My question relates to the point that was just made. We have this problem today, but clinical trials will take six months, nine months or a year. What can we reasonably do legally to get certified products that we know will work into the hands of parents with children who desperately need them today?
I entirely understand the hon. Gentleman’s point, and I feel the same way as he does about the urgency of these cases. The need to get a second opinion can be actioned immediately, and it will be, because the crucial point is that unlicensed medicines cannot be prescribed without a clinician. There are just over 95,000 clinicians on the specialist register, and any of those who have expertise in this area can, if their clinical judgment allows, make these prescriptions. That can happen right now.
I was very supportive of the case of Alfie Dingley and the change in the law. The Secretary of State is absolutely right that this must be based on clinical decisions. However, given that there are several hundred children suffering from severe intractable epilepsy, is not the problem that the guidance from NHS medical bodies is just too stringent? Is it true that only two NHS prescriptions have actually been issued to date? Given that Teagan Appleby has had at least a dozen prescribed drugs—I will not list them, to avoid stressing Hansard—as well as a nerve stimulator, what would be the downside of allowing her access to medical cannabis now?
My hon. Friend makes a good point. More than 80 prescriptions have been made, but that is for both THC and CBD. Of course, THC brings risks—the active elements within cannabis do bring risks. There are also benefits, as I have seen very clearly. It must be for a clinician to decide the balance of those risks. I have enormous sympathy for the families, having heard their personal testimony about the massive benefits for their children, who sometimes, as my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) said, have 300 seizures a day. Having seen that and looked them in the eye, I understand the benefits. However, it has to be a clinician who makes that judgment. I am not medically qualified and cannot overrule a clinician, but there are clinicians available who can provide a second opinion, and that is what I can ensure.
I am grateful to the Secretary of State for what he has said so far, but I have spoken with a neurosurgeon in my constituency who says that one of his anxieties is not being able to give good advice to parents whom he suspects might be trying to access medical cannabis through not wholly legal routes, because he is unsure what the law is. I agree with the Secretary of State on the need for clinical evidence, so what more information can he give us on the timescale? When will we see the health education research that he talks about? In the meantime, why can we not use the evidence of clinical trials conducted elsewhere?
The evidence of clinical trials from elsewhere can and should be used. All international clinical evidence should be brought to bear on such decisions and has been in the case of CBD. As for how quickly things will happen, the answer is, as the hon. Lady would imagine, as soon as possible.
The SNP spokesman was spot on. This is about not just drugs such as ketamine and diazepam, but beta blockers, which can also be extremely dangerous in the wrong hands. Will my right hon. Friend speak to the Home Secretary and say, “Look. This is a medical treatment. It shouldn’t be a controlled drug as such”? This treatment should not be stopped at our borders, particularly when it appears that not enough people are prepared to prescribe it.
I spoke to the Home Secretary this morning about the issue, and we proposed to see it as a health matter, not a borders matter. The Border Force officers were merely following the rules, and the question is about whether the drug is licensed. If it is not licensed, but it is controlled, the question is about whether it has clinical sign-off. The truth is that the compound does have negative effects, so it must be a controlled drug. I do not support the legalisation of all cannabis. Unless one supports the legalisation of cannabis in all cases, it has to be a controlled drug, which leads us to where we are. We must get the evidence of the medical and clinical benefits that the families have emphatically explained, and I want to see this situation dealt with properly.
Some reports suggest that even Alfie Dingley, whose case gave rise to the new legislation, probably would not be eligible for medicinal cannabis under the new regulations because they are so strict. The Health and Social Care Secretary says that 95,000 clinicians are ready and waiting to sign off prescriptions, but can he explain why they are not doing so? If it is as easy as that, surely they would be doing it, so what else will he do to look at the barriers?
We have ensured that all the patients who received access to medicinal cannabis on an exceptional basis before the law changed on 1 November can continue to access it. If that is not the case in any instance, I want to know about that so that we can fix it. Alfie Dingley would be eligible for these drugs if a clinician were prepared to sign off the benefits for Alfie, and such decisions must be led by clinicians. I am doing everything I can to get the evidence and second opinions in place and to ensure that the process works as well as possible. That is what I can do. What I cannot do—it would be unreasonable for any Health Secretary to do so—is overrule clinical decision making in individual cases. That would be wrong, and I do not think that any Member of this House would propose that I should do it.
A number of us have been written to by constituents about such cases, and I have corresponded with the Secretary of State about Julie and Stuart Young, the parents of Lloyd, for example. Clinical trials have been mentioned across the House, but a piece of legislation is already in place. The Access to Medical Treatments (Innovation) Act 2016, which was sponsored by me in the Commons and by Lord Saatchi in the other place, seems ideally suited to help us through this sticky situation.
Yes, we are looking carefully at how we can use that legislation as effectively as possible. Understanding the medical consequences of any use of a drug is incredibly helpful evidence for where it should be prescribed further, and that is the thrust of the 2016 Act.
I congratulate the right hon. Member for Hemel Hempstead (Sir Mike Penning), my co-chair of the APPG on medical cannabis under prescription. The situation is, frankly, intolerable. I have spoken with all of the families requesting medicinal cannabis with THC—let us not forget the THC. I am sure that Teagan will get a second opinion and that she is another child who will get access to medical cannabis, but what about all the others? They cannot wait. My right hon. Friend the Member for Exeter (Mr Bradshaw) spoke truthfully about the inquiry and the evidence it has taken. The BPNA has not spoken as it should have and it has not done enough to support the families.
The BPNA is going to have to answer for itself about the way in which its representatives conducted themselves in front of the Select Committee. It is independent. Understandably, in medicine the bodies that make clinical guidance do not direct the answer for that clinical guidance to the Secretary of State. I understand the hon. Lady’s strength of feeling and that of others. I also understand the strength of feeling of the parents. I understand what a desperate situation they are in, and I am trying to make sure that it can be resolved and that they can get the drugs. I make one point to the hon. Lady: the very exercise of a clinical trial requires us to get the drugs to some children. I very much hope, therefore, that the start of a clinical trial can help to get the drugs to the people who need them. We do not have to wait for the results.
Although medicinal cannabis can have great benefits for some epileptic children, we should not forget the devastating impact that cannabis can have and its long-term impact on psychosis and schizophrenia. [Interruption.] I speak from personal experience of living with an affected family member. It is right that this is dealt with on a case-by-case basis. How soon will updated training be available for our health professionals?
The updated training will be available imminently. There are risks as well as upsides, and it is absolutely right that it is clinicians who make the judgment in respect of every decision and based on the individual patient. That, I am afraid, is the way in which medicine always has been—and, I imagine, always will be—practised in this country.
Will the Secretary of State confirm whether it is true that if a Dutch mother brought the same medicine to the United Kingdom, she could administer it to her own Dutch child without the import licence that Emma Appleby is saying that she must have? If that is true, is this not just another example of how shambolically this policy is being implemented?
I have heard that accusation being made by a couple of the parents. I am advised that that is not the case, but I am very much looking into it because in these circumstances I always think we need to listen to the people who are trying to resolve the issue. I am looking into that very point.
I have previously raised the case of my constituent, 11-month-old Nathaniel Leahy, who, owing to his extremely rare form of epilepsy, lives in great pain. His mum told me today:
“I am living in fear each day that Nathaniel will not make it to the next day. We were promised in November of last year that this medicine would be available.”
Does the Secretary of State understand the powerful sense of frustration felt by families such as Nathaniel’s, and will he address the question of the guidelines so that we can have fewer stringent guidelines, to benefit patients?
I entirely understand that sense of frustration. I went to meet some of the parents to hear directly from them the pain and suffering that they and their children are feeling, which I entirely understand. That is one of the reasons why we are pushing so hard to try to resolve this. Resolving the questions around the guidelines is also important but, as the hon. Gentleman knows, those guidelines are written independently of Ministers.
My constituent Teagan Appleby suffers horrendously with one of the worst cases of child epilepsy in the United Kingdom. It has been heartrending to go round to her house to see her suffering. To see how her mother, Emma, copes with the challenge is inspiring.
Legal heroin, morphine, has been prescribed in this country for many decades. Why can we not have legal cannabis, too? Is it not high time that the NHS got on with changing the guidelines to make sure that medicinal cannabis is available, rather than wasting time arresting Emma at Southend airport, which is quite the wrong thing to see?
My hon. Friend represents Teagan Appleby, her family and her parents, and he speaks for the whole House in what he says. He has captured the essence of this debate. I am trying to resolve it to his satisfaction and to the family’s satisfaction as soon as possible. There are barriers to that resolution, and I am happy to work with him, with the APPG and with all others who have constituency cases to try to resolve this significant problem.
The Secretary of State will be aware of the case of my constituent Cole Thomson, aged six, who has battled repeated epileptic seizures every night and has had terrible periods of deterioration. In order to gain the prescription, we have had to battle the system as well as the illness. Parents do not have the energy, when they are looking after a sick child, to battle the system, so can the Secretary of State ensure the streamlining of this process to make sure that specialist training is available? In the meantime, will he make available to parents a register of the specialists who can prescribe medicinal cannabis? The postcode lottery cannot go on.
I commend the Secretary of State for his statement. I, like many others in this House, have had constituents visit me to make powerful, personal cases on the impact they think cannabis oil could have for their children. Will he join me in praising the work of the campaign group End Our Pain, which has done such a good job of highlighting this issue and making sure that we in this House are aware of the situation and of the benefits it can bring?
I have already paid tribute to the APPG, and today’s urgent question has demonstrated the breadth of concern in this House. Those who are independent of Government need to make sure that they listen to this level of concern. I am certainly determined to do everything I can to try to resolve this issue.
It has always been the case that the Home Secretary could issue a special licence to allow the medical use of cannabis oil. I understand that the Health Secretary may be seeing him this evening, and I wondered whether he will ask him to consider this course of action.
One of the great frustrations for me, for the Home Secretary and, of course, for the families is that, before the law was changed on 1 November, that course of action was open. For a few dozen cases, the Home Secretary made those special licences to allow for the use of medicinal cannabis. He and I changed the law together to try to make sure that medicinal cannabis is available on a mainstream basis. Now it is available on a mainstream basis, as a normal drug, it therefore needs clinical sign-off. The problem is there are so many cases where that clinical sign-off has not been forthcoming. That is a source of immense frustration to me, as I hope the hon. Lady can imagine, and it is what we are trying to resolve.
Does my right hon. Friend agree that we should be led by evidence? As our scientific knowledge continues to progress, so should the views and the laws made in this House. Will he provide more clarity, not just in this instance but as new and more radical drugs become available in the near future, on how our constituents and this House could benefit and push through laws more quickly?
My hon. Friend makes a very important point. To ensure that the use of medical cannabis becomes mainstream, we need to ensure that the evidence base is there. Essentially, doctors think there is a much deeper evidence base for CBD than for THC. There is a broader point, which is that the medical profession and this House need to keep up to speed with the evidence as it is developed. In this case, that means going out of our way to develop the evidence and to have clinical trials in which some of the patients who want the drug can participate. That will provide the evidence base that allows the vast array of specialists to prescribe it.
It was clear from the evidence given to the Health and Social Care Committee that the Government raised public expectations when they rescheduled medical cannabis. I wonder whether it is time for the Secretary of State to ensure that there is a public awareness campaign, with full information about what the Government are trying to do.
I will look at that idea and discuss it with the NHS. The training programme that we are putting in place is intended to raise awareness of the evidence and the change in rules among the profession—among doctors and the specialist prescribing doctors on the register. Ultimately, it is only with clinical sign-off that we allow any drug to be prescribed. That is where the training needs to be in the first instance, but I will look at the hon. Lady’s suggestion of doing it more broadly.
Anyone who goes through the heart-rending experience of seeing a very sick family member suffer will know that they would do anything to help that person, often reaching the point of desperation. People need to be confident that they can get hold of cannabis-based medicines if it is appropriate and that those medicines are safe. In this instance, there is a lot riding on the shoulders of our doctors. Will my right hon. Friend assure us that doctors are being given the right guidance to do what is right for patients, but also that they will not be blamed if something goes wrong?
I thank the right hon. Member for Hemel Hempstead (Sir Mike Penning) for raising this important issue, which affects one of my constituents, Murray Gray, directly. His mother is one of those parents who is now desperate, having been given hope.
Does the Secretary of State agree that we have the evidence from abroad that these medicines can work and we have the willingness of everybody in this House to make it work, but somehow there is a gap between our willingness and our ability to make it happen? Will he assure the House that he will speak to the Home Secretary and to the devolved Administrations who have NHS responsibility to try to get some kind of action through co-operation to reassure the parents who are desperate not just because their children will suffer but because they may not survive?
Yes, of course; I am very happy to do that. Perhaps I should take this opportunity to welcome the new public health Minister, the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for South Ribble (Seema Kennedy) to her post. She will, no doubt, have listened to all the questions today. She and I will be working on making this happen.
I would add to the hon. Lady’s list, because this is not just about the Home Office and the Department of Health and Social Care; it is about making sure that the independent medical establishment has confidence in the evidence that is presented. It is not enough for her and I to have confidence as lay politicians; it is important that the professionals who put their signature on the line have confidence in the evidence as well.
Does the Secretary of State appreciate the public’s concern that, at a time when several police forces have openly admitted that they will not take action against those involved in recreational cannabis use, the full weight of the Home Office’s Border Force is deployed to intercept medication for a seriously ill young child? Surely getting medication to a seriously ill young girl should never be a crime.
My hon. Friend makes an important point. The Border Force should not be criticised in this case, because it was following the rules: if a clinician has not signed something off it cannot come in. It is incumbent on us on the health side to sort out this problem. He makes a broader point, however, that this is a completely separate issue to the recreational use of cannabis. I do not support a change in the rules on the recreational use of cannabis; this is about the specialist provision of drugs to some children who are the most vulnerable people in society, and the need to ensure that the medical benefits of such drugs can be brought to bear on people who really need them.
Like many colleagues, I have spoken with parents of children who have profound challenges that could be ameliorated by medicinal cannabis. They are at their wits’ end, and it is no surprise to find that some in this country resort to desperate measures. I have listened for 45 minutes now and I cannot tell the answer to this question: is the Secretary of State really saying that we have a clear, universal, safe and compassionate approach to this issue and, if we do not, when will we?
I am saying that if a patient needs medicinal cannabis, and if a clinician will sign off on that need, the prescription can happen. The guidance from the association does not override the individual judgment of that clinician. That can happen but, because it has not been happening in many cases that have been brought to light, some privately and some very publically, I am putting in place a system of second opinions to ensure that we can get that clinical decision right, at the same time as developing a stronger evidence base for the future.
Reuben Young is an 11-year-old boy in my constituency who suffers from myoclonic astatic epilepsy, which is a severe and rare form of epilepsy. His mother, Emma, is at her wits’ end. Conventional medicines do not work and she has tried to get a prescription for Epidiolex, which is a cannabis-derived medicine. She tells me that she is unable to get it because the physicians involved say that the guidelines prevent them from prescribing it. I do not know why, but for some reason the change in policy last November is not leading to a change in practice. I ask the Secretary of State to speak with the Home Secretary and to have an urgent—I mean in days or weeks—review to see how the existing guidelines can do better.
Those guidelines are not a matter for the Home Secretary; they are guidelines in the health space, although the association that writes them does not report directly to me but is independent. Those guidelines do not prevent a physician who is on the specialist register of the General Medical Council from prescribing. If anybody has been told that they do, they do not; it is up to the individual professional judgment of a specialist clinician on the register to prescribe or not.
Lara Smith, my constituent, is really upset about what happened to Teagan and her family at the weekend. Lara travels to Holland every three months to get a schedule 2 drug, Bedrocan, for her seriously debilitating illness. It could be imported but, if it was, unfortunately, she would have to bear the licence fee. Will the Minister say whether anything can be done for her?
Yes. My heart goes out to the hon. Lady’s constituent and her family. One of the purposes of the evidence gathering that we are doing, and of the calls of the national institute for trials, is to provide the evidence on which the NHS could routinely provide those medicines. At the moment, we have the ability for specialists to prescribe in the interim, but I want to get the evidence base in place for the longer term.
One of my constituents—one of many who has been in touch with me about this issue—has multiple sclerosis and found previously that cannabis helped his symptoms immensely, but he does not want to break the law and he cannot get a prescription. What would the Secretary of State advise him to do?
I agree that we need to remove the barriers for clinicians. We need evidence, but the problem with randomised control trials is the nature of cannabis. The fact that it contains many different compounds that interact makes it difficult to isolate the compounds that work for individuals. Cannabis is a unique treatment, and should really be in a licensing and scheduling category of its own to allow different approaches. I urge the Secretary of State to encourage observational trials so that we can allow patients to get access to the medical cannabis that will work for them.
We looked at observational trials, but the problem is that they do not build the evidence base that a full RCT does. A full RCT also allows some patients to get access while the trial is ongoing, so it is in fact a better proposal. It means that some patients can get the treatment now for the purposes of the trial, and then we can get a full evidence base for the long term, as was mentioned previously.
The law may be an ass, but it does not have to be applied in an asinine way, as it was in the case of Emma Appleby. Will the Secretary of State have words with the Home Secretary to make sure that it is not repeated? My constituent, Bailey Williams, is 16 years of age and suffers from the most severe form of epilepsy. He has multiple seizures every day. His parents, Rachel and Craig, are absolutely convinced that we need observational trials and more immediate action. I accept that this was unintended, but sadly the change in the law has made things worse, not better, for those parents. What will the Secretary of State do to turn that around quickly?
It is a source of deep frustration to me that the change in the law to normalise the use of medicinal cannabis has, exactly as the hon. Gentleman says, meant that, because a clinical decision is needed for a prescription, and because in many cases clinical decisions are not forthcoming, many parents who entirely understandably think that their child would benefit from medicinal cannabis now find that they cannot get a clinician to sign it off. That is at the root of the problems that we are trying to tackle today.
Although the Secretary of State is adamant that the guidelines are not a problem, it is clear that they and the associated liability are an issue. Let us hope that the review will pick that up. Four-year-old Logan Chafey in my constituency is the only child in the whole of Europe who has chromosome 7p duplication syndrome. One of the current rules is that there needs to be a proven benefit before a clinician can prescribe medicinal cannabis. How can we get to a position where Logan can get medicinal cannabis?
The expectations of too many families have been raised by the Government’s previous announcements. It really is time that they get a move on. I will write to the Secretary of State about my young constituent who has Aicardi syndrome. Her parents firmly believe that medical cannabis would help her symptoms and seizures. What steps is he taking to ensure that those kinds of rare syndromes are taken into account at trial stage?
They must be taken into account. It comes down to the question of the complexity of cannabis and the many dozens of active agents in it; CBD and THC, which we have mostly been discussing today, are the main ones. Many drugs have similarly complex interactions. Modern science and medicine are capable, in a controlled environment, of getting to the bottom of which ones have the effect. That is why it is better to do a full RCT with the full scientific structure around it, rather than an observational trial. That will get the drugs to the people who need them quickly, and will provide the evidence base. I hope that that satisfies the hon. Gentleman that, in that space, we are doing as much as we can. On the timing, I want it to happen as quickly as possible.
It was a very wise decision. Thank you, Mr Speaker.
I, too, have constituents who have been exiled to the Netherlands to secure medicinal cannabis for a severely epileptic child, and others who are spending a fortune importing cannabis oil from Canada to help slow the progression of a terminal brain tumour. Will families such as these soon be able to take part in proper clinical trials, as they would be able to elsewhere, so that they can have some hope and we can all benefit from the evidence that will be gained?