PARLIAMENTARY DEBATE
Access to Medical Cannabis - 8 April 2019 (Commons/Commons Chamber)
Debate Detail
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.
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.
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.
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.
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.
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?
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.
“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?
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.
“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?
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?
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?
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.
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?
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