PARLIAMENTARY DEBATE
Medical Cannabis under Prescription: Children with Epilepsy - 3 November 2021 (Commons/Westminster Hall)
Debate Detail
Contributions from Alberto Costa, are highlighted with a yellow border.
in the Chair
Hannah Bardell
Before we begin, I remind Members that they are expected to wear face coverings, given the recent outbreak of covid-19 in Parliament. I expect all Members to be wearing masks if they are not speaking; if there are Members without a mask, masks can be found to my right, on top of the cupboard. This is in line with current Government guidance and that of the House of Commons Commission. I also remind Members that they are asked by the House to have a covid lateral flow test twice a week if coming on to the parliamentary estate. This can be done either at the testing centre in the House or at home. Please also give Members adequate space when seated, and when entering and leaving the room.
Members will be aware that we have been delayed as a result of two votes, so this debate is due to end at 5.56 pm.
Members will be aware that we have been delayed as a result of two votes, so this debate is due to end at 5.56 pm.
Alberto Costa
South Leicestershire
I beg to move,
That this House has considered medical cannabis under prescription for children with epilepsy.
It is a pleasure to serve under your chairmanship, Ms Bardell, and I am very grateful to open this debate on an issue that affects many of our constituents. I do not propose to speak for long, because I can see that quite a large number of colleagues are in the Chamber and would like to speak as well. If they have not already done so, I invite them to inform the Chair that they wish to speak.
I wish to mention my constituents Maya, who is nine years old, and Evelina, who is just four. Maya and Evelina suffer from rare forms of epilepsy and rely on medical cannabis to improve their quality of life. Their families are currently having to pay up to £2,000 a month for private prescriptions of medical cannabis, as they are unable to access that medicine on the NHS. Their families are also having to go to unbelievable lengths to raise money, something that has been made more difficult during the pandemic as there has been less opportunity to fundraise. Maya’s family have set up a Facebook page called “Mercy for Maya”, where her mum Samantha runs monthly fundraisers and raffles to help with the enormous monthly costs. My constituents should not have to do this for something that is legal on the NHS.
That this House has considered medical cannabis under prescription for children with epilepsy.
It is a pleasure to serve under your chairmanship, Ms Bardell, and I am very grateful to open this debate on an issue that affects many of our constituents. I do not propose to speak for long, because I can see that quite a large number of colleagues are in the Chamber and would like to speak as well. If they have not already done so, I invite them to inform the Chair that they wish to speak.
I wish to mention my constituents Maya, who is nine years old, and Evelina, who is just four. Maya and Evelina suffer from rare forms of epilepsy and rely on medical cannabis to improve their quality of life. Their families are currently having to pay up to £2,000 a month for private prescriptions of medical cannabis, as they are unable to access that medicine on the NHS. Their families are also having to go to unbelievable lengths to raise money, something that has been made more difficult during the pandemic as there has been less opportunity to fundraise. Maya’s family have set up a Facebook page called “Mercy for Maya”, where her mum Samantha runs monthly fundraisers and raffles to help with the enormous monthly costs. My constituents should not have to do this for something that is legal on the NHS.
16:59:37
Christine Jardine
Edinburgh West
The picture that the hon. Member paints is one that I and many other hon. Members are familiar with, because we also have constituents going through the same ridiculous hoops to get a legally available medicine. Is he aware of any other medication in this country for which that has ever been the case—it has been legal and available, but people have had to raise the money for it themselves in this way?
17:00:27
Alberto Costa
I am not sure, but I doubt that our constituents would have to put their hands in their pockets to the tune of £2,000 a month to pay for any other medication that was extremely important for their severely ill children. My constituents, and indeed all Members’ constituents who have children in this situation, should not have to pay for this medication themselves.
Medical cannabis has had lots of benefits for Maya, including preventing her from having prolonged seizures, which has meant less time in hospital. Medical cannabis has also improved her alertness and engagement. She used to spend a lot of time asleep during the day, but she is now able to attend school, which she very much enjoys.
Both I and colleagues have lobbied the Government tirelessly to widen access to this life-changing and life-saving treatment. I am sure that I speak for many Members here today in expressing delight that medical cannabis was made legal in specialist cases in November 2018. This week marks three years since that law change.
I welcome the new Minister to her place and the good progress that the Government have made on widening access to medical cannabis. I am also grateful to her for agreeing to meet me, as co-chair of the all-party parliamentary group for access to medical cannabis under prescription, along with my colleague the hon. Member for Gower (Tonia Antoniazzi), later this month. I look forward to discussing the issues in greater detail with her.
You may be interested to learn, Ms Bardell, that since the very welcome law change three years ago, which should have improved the lives of children who suffer with rare and intractable forms of epilepsy, only three prescriptions have been issued on the NHS—only three prescriptions. At this point, I would like to clarify that we are talking about whole-plant extract. This type of medical cannabis, containing CBD and THC—cannabidiol and tetrahydrocannabinol—together with many other active ingredients, has been life transforming for a small cohort of families and their children. It is vital that that point is understood, as there have been several hundred prescriptions for a fully licensed paediatric drug known as Epidiolex, but that is primarily CBD-only. There is an acknowledgement that that drug has a role to play, but it was not the subject of the appeals that were so eloquently and passionately made by the families concerned when they visited Parliament at the start of this week.
Access to medical cannabis was legalised after high-profile campaigning by me and other Members across the House, who are here today, and the hard work of the group End Our Pain. It and other campaigners, along with some of my colleagues, worked with the then six-year-old Alfie Dingley, who also suffers from rare, intractable epilepsy, to help him secure access to medical cannabis. In 2018, after intensive campaigning, Alfie was granted the first ever long-term licence for the type of medical cannabis that is life transforming. Medical cannabis subsequently became legalised in specialist cases on 1 November 2018. Since Alfie secured the prescription, his transformation has been significant. He has gone from suffering up to 150 life-threatening seizures a day to recently celebrating being 500 days seizure free. The change in health and quality of life for Alfie is nothing short of transformative, and that transformation has been evident in many others, too.
I am very grateful to the Secretary of State for Health and Social Care, who in 2018 was the Home Secretary who granted the licence for medical cannabis to Alfie Dingley. I know that my right hon. Friend cares deeply about this issue. Now that he is Secretary of State for Health, I urge him to consider the recommendations that I am mentioning today on what further action could be taken to help children like my constituents to access medical cannabis on the NHS. The law change has been a change in legislation, but not in practice. That has been reflected in the number of NHS prescriptions that have been issued. My constituents and many others were greatly reassured by the steps that this Government took to legalise these treatments in 2018, but they are understandably dismayed that actions have not followed words in this case.
There are a few reasons for this blockage on NHS prescriptions. At the same time that the law changed, a number of bodies issued guidance on how and when medical cannabis should be prescribed. Those bodies included the British Paediatric Neurology Association, the General Medical Council, the National Institute for Health and Care Excellence and the Royal College of Physicians, but let us be clear: nothing—absolutely nothing—in any of the guidance states that it is wrong or not allowed to prescribe this medicine, either privately or on the NHS.
However, I am advised by the families and advocates on this issue that the guidance paints a somewhat confusing picture. In my capacity as co-chair of the APPG, I have attended a number of meetings with senior NHS leaders. In those meetings, they tell me that if an NHS consultant wishes to prescribe medical cannabis, they are able to do so. The British Paediatric Neurology Association does not currently support the use of whole-plant medicinal cannabis, which includes the THC ingredient, and has published guidance stating that only neurologists should be allowed to prescribe cannabinoids containing CBD. That guidance has been criticised for being overly restrictive.
The high level of caution in the guidance issued is likely to have played its part in preventing the prescribing of those products and making NHS trusts unwilling to provide funding. Currently, there are only three paediatricians in Britain who prescribe the whole-plant oil to children with drug-resistant epilepsy, and one of them is to retire imminently, meaning that families are at risk of losing their prescriptions.
A few months ago we had a breakthrough, as NICE issued clarification of its guidance relating to the use of medical cannabis for drug-resistant paediatric epilepsy. It has now made it clear that clinicians can prescribe medicinal cannabis in appropriate cases. However, even since the clarification of the guidance, the hesitancy among the medical profession remains.
I am aware that this issue continues to receive a high degree of media, public and political attention, and I am concerned that some of those involved—perhaps some of the medical professional bodies such as the BPNA—may be experiencing a temptation to entrench and dig in. If that is the case, I make a plea to them and their medical professional colleagues to reject that temptation and instead to reach out to work with the Department of Health and Social Care, the Minister and her colleagues, the families and interested politicians to find a way forward to help these vulnerable families and their children.
I also strongly encourage the Government to ensure better education for paediatric neurologists on whole-plant extract medical cannabis and its benefits for children with drug-resistant epilepsy. I am aware that the previous Secretary of State for Health and Social Care tasked the NHS with undertaking a review of the blockage on NHS prescriptions. The review reported in August 2019 and made two main recommendations: first, that an expert panel be set up to advise on the prescription of medical cannabis in cases of paediatric epilepsy; and secondly, that a trial should be set up to inform the evidence base on safety and efficacy, and to act as a way of getting these families access to the medicine for free.
The families and campaigners have told me that those recommendations offered them great hope and a way forward. However, things have not worked out as the families hoped. Yes, the expert panel was set up; it is called RESCAS—the refractory epilepsy specialist clinical advisory service—and its members are indeed experts in paediatric epilepsy, but as far as the families can see they are not experts in the way that whole-plant extract has worked both here in the UK and overseas.
Imagine, then, the enormous disappointment when one of the very first cases considered was turned down for medical cannabis. The young boy in question is experiencing a life transformation similar in positive impact to that which Alfie is experiencing. The panel is not working. I know the Minister cares deeply about this matter. I hope she will agree that the make-up and terms of the panel are in need of urgent review so that it includes expertise not just in the condition itself, but in the medicine too.
The other main recommendation of the August 2019 review was the establishment of trials. I understand that the Government’s position is that there needs to be more research in the area before prescriptions can be available more freely. The proposed trial was to be observational, which meant the children could continue on the medicine and their condition be evaluated by medical professionals. It soon became clear last year that plans for the observational trial had been dropped and replaced with a randomised control trial. RCTs are not appropriate in this case, as I am sure hon. Members agree, as they require some of the cohort to be taken off the medicine and given a placebo.
That is simply not possible, and we have to ask ourselves why anyone would take their children off a medicine that was already working for them and improving their quality of life. RCTs can also be incredibly costly and take years to complete. That is time that my constituents and others do not have. I therefore suggest that the Government consider conducting an observational trial or an alternative study as a means of enabling the children to have continued access to medical cannabis at no cost. That would be possible for the Secretary of State, and the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Lewes (Maria Caulfield), here today, to commission under the National Health Service Act 2006.
Medical cannabis has had lots of benefits for Maya, including preventing her from having prolonged seizures, which has meant less time in hospital. Medical cannabis has also improved her alertness and engagement. She used to spend a lot of time asleep during the day, but she is now able to attend school, which she very much enjoys.
Both I and colleagues have lobbied the Government tirelessly to widen access to this life-changing and life-saving treatment. I am sure that I speak for many Members here today in expressing delight that medical cannabis was made legal in specialist cases in November 2018. This week marks three years since that law change.
I welcome the new Minister to her place and the good progress that the Government have made on widening access to medical cannabis. I am also grateful to her for agreeing to meet me, as co-chair of the all-party parliamentary group for access to medical cannabis under prescription, along with my colleague the hon. Member for Gower (Tonia Antoniazzi), later this month. I look forward to discussing the issues in greater detail with her.
You may be interested to learn, Ms Bardell, that since the very welcome law change three years ago, which should have improved the lives of children who suffer with rare and intractable forms of epilepsy, only three prescriptions have been issued on the NHS—only three prescriptions. At this point, I would like to clarify that we are talking about whole-plant extract. This type of medical cannabis, containing CBD and THC—cannabidiol and tetrahydrocannabinol—together with many other active ingredients, has been life transforming for a small cohort of families and their children. It is vital that that point is understood, as there have been several hundred prescriptions for a fully licensed paediatric drug known as Epidiolex, but that is primarily CBD-only. There is an acknowledgement that that drug has a role to play, but it was not the subject of the appeals that were so eloquently and passionately made by the families concerned when they visited Parliament at the start of this week.
Access to medical cannabis was legalised after high-profile campaigning by me and other Members across the House, who are here today, and the hard work of the group End Our Pain. It and other campaigners, along with some of my colleagues, worked with the then six-year-old Alfie Dingley, who also suffers from rare, intractable epilepsy, to help him secure access to medical cannabis. In 2018, after intensive campaigning, Alfie was granted the first ever long-term licence for the type of medical cannabis that is life transforming. Medical cannabis subsequently became legalised in specialist cases on 1 November 2018. Since Alfie secured the prescription, his transformation has been significant. He has gone from suffering up to 150 life-threatening seizures a day to recently celebrating being 500 days seizure free. The change in health and quality of life for Alfie is nothing short of transformative, and that transformation has been evident in many others, too.
I am very grateful to the Secretary of State for Health and Social Care, who in 2018 was the Home Secretary who granted the licence for medical cannabis to Alfie Dingley. I know that my right hon. Friend cares deeply about this issue. Now that he is Secretary of State for Health, I urge him to consider the recommendations that I am mentioning today on what further action could be taken to help children like my constituents to access medical cannabis on the NHS. The law change has been a change in legislation, but not in practice. That has been reflected in the number of NHS prescriptions that have been issued. My constituents and many others were greatly reassured by the steps that this Government took to legalise these treatments in 2018, but they are understandably dismayed that actions have not followed words in this case.
There are a few reasons for this blockage on NHS prescriptions. At the same time that the law changed, a number of bodies issued guidance on how and when medical cannabis should be prescribed. Those bodies included the British Paediatric Neurology Association, the General Medical Council, the National Institute for Health and Care Excellence and the Royal College of Physicians, but let us be clear: nothing—absolutely nothing—in any of the guidance states that it is wrong or not allowed to prescribe this medicine, either privately or on the NHS.
However, I am advised by the families and advocates on this issue that the guidance paints a somewhat confusing picture. In my capacity as co-chair of the APPG, I have attended a number of meetings with senior NHS leaders. In those meetings, they tell me that if an NHS consultant wishes to prescribe medical cannabis, they are able to do so. The British Paediatric Neurology Association does not currently support the use of whole-plant medicinal cannabis, which includes the THC ingredient, and has published guidance stating that only neurologists should be allowed to prescribe cannabinoids containing CBD. That guidance has been criticised for being overly restrictive.
The high level of caution in the guidance issued is likely to have played its part in preventing the prescribing of those products and making NHS trusts unwilling to provide funding. Currently, there are only three paediatricians in Britain who prescribe the whole-plant oil to children with drug-resistant epilepsy, and one of them is to retire imminently, meaning that families are at risk of losing their prescriptions.
A few months ago we had a breakthrough, as NICE issued clarification of its guidance relating to the use of medical cannabis for drug-resistant paediatric epilepsy. It has now made it clear that clinicians can prescribe medicinal cannabis in appropriate cases. However, even since the clarification of the guidance, the hesitancy among the medical profession remains.
I am aware that this issue continues to receive a high degree of media, public and political attention, and I am concerned that some of those involved—perhaps some of the medical professional bodies such as the BPNA—may be experiencing a temptation to entrench and dig in. If that is the case, I make a plea to them and their medical professional colleagues to reject that temptation and instead to reach out to work with the Department of Health and Social Care, the Minister and her colleagues, the families and interested politicians to find a way forward to help these vulnerable families and their children.
I also strongly encourage the Government to ensure better education for paediatric neurologists on whole-plant extract medical cannabis and its benefits for children with drug-resistant epilepsy. I am aware that the previous Secretary of State for Health and Social Care tasked the NHS with undertaking a review of the blockage on NHS prescriptions. The review reported in August 2019 and made two main recommendations: first, that an expert panel be set up to advise on the prescription of medical cannabis in cases of paediatric epilepsy; and secondly, that a trial should be set up to inform the evidence base on safety and efficacy, and to act as a way of getting these families access to the medicine for free.
The families and campaigners have told me that those recommendations offered them great hope and a way forward. However, things have not worked out as the families hoped. Yes, the expert panel was set up; it is called RESCAS—the refractory epilepsy specialist clinical advisory service—and its members are indeed experts in paediatric epilepsy, but as far as the families can see they are not experts in the way that whole-plant extract has worked both here in the UK and overseas.
Imagine, then, the enormous disappointment when one of the very first cases considered was turned down for medical cannabis. The young boy in question is experiencing a life transformation similar in positive impact to that which Alfie is experiencing. The panel is not working. I know the Minister cares deeply about this matter. I hope she will agree that the make-up and terms of the panel are in need of urgent review so that it includes expertise not just in the condition itself, but in the medicine too.
The other main recommendation of the August 2019 review was the establishment of trials. I understand that the Government’s position is that there needs to be more research in the area before prescriptions can be available more freely. The proposed trial was to be observational, which meant the children could continue on the medicine and their condition be evaluated by medical professionals. It soon became clear last year that plans for the observational trial had been dropped and replaced with a randomised control trial. RCTs are not appropriate in this case, as I am sure hon. Members agree, as they require some of the cohort to be taken off the medicine and given a placebo.
That is simply not possible, and we have to ask ourselves why anyone would take their children off a medicine that was already working for them and improving their quality of life. RCTs can also be incredibly costly and take years to complete. That is time that my constituents and others do not have. I therefore suggest that the Government consider conducting an observational trial or an alternative study as a means of enabling the children to have continued access to medical cannabis at no cost. That would be possible for the Secretary of State, and the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Lewes (Maria Caulfield), here today, to commission under the National Health Service Act 2006.
17:12:02
Tahir Ali
Birmingham, Hall Green
The cost of having medicinal cannabis for children is astronomical, at between £800 and £2,000, and that is for those who can afford it. The very children who need the medicine to improve the quality of their lives where it has been proven to be effective and who cannot afford it cannot be put on the scrapheap to further delay. Does the hon. Gentleman agree?
17:14:09
Alberto Costa
I think it is imperative that we work cross party and we encourage, cajole and push the Government to do the right thing. The right thing is what? While acknowledging that the Ministers have these powers, I understand that there are concerns about whether such action might lead to unintended consequences in the form of legal challenge relating to other drugs. I am a lawyer; I understand that. I used to work in government and defend the Government from judicial review. I understand.
However, I believe that any such concerns and risks could be mitigated. I also suggest in the meantime that the Government use the discretionary fund that they have at their disposal to cover the cost of the private prescriptions. There are a small number of children and families across the country in this desperate financial situation. The Government can intervene financially to reduce the burden every month, so that families such as my constituents Maya and Evelina do not have to rely on the uncertainty of fundraising. That is my favoured option, and I urge my hon. Friend the Minister to access that fund.
During the pandemic, Maya had to be rushed to A&E a few times due to her condition. Surely these children needing to go to hospital to have urgent medical treatment is more costly to the NHS than providing them with the prescription they need. Therefore, I suggest, only as an interim measure—I plead—that the Government consider covering the costs of the private prescriptions for the most vulnerable children in our country suffering from severe epilepsy who need this medication, until the Government find a solution with the bodies and particularly the medical profession.
In conclusion, I urge my colleagues in Government to consider the recommendations that I and other colleagues across the House have made and are making here today, as well as listening to the families affected. While I appreciate the good work that the Government have done on this issue, they can and should go further. I and many colleagues across the House will continue to champion this matter: better access to medicinal cannabis on the NHS for my constituents, all the constituents affected across our country and all the children suffering from this awful illness, so that they get the drugs necessary, free at the point of need on the NHS.
However, I believe that any such concerns and risks could be mitigated. I also suggest in the meantime that the Government use the discretionary fund that they have at their disposal to cover the cost of the private prescriptions. There are a small number of children and families across the country in this desperate financial situation. The Government can intervene financially to reduce the burden every month, so that families such as my constituents Maya and Evelina do not have to rely on the uncertainty of fundraising. That is my favoured option, and I urge my hon. Friend the Minister to access that fund.
During the pandemic, Maya had to be rushed to A&E a few times due to her condition. Surely these children needing to go to hospital to have urgent medical treatment is more costly to the NHS than providing them with the prescription they need. Therefore, I suggest, only as an interim measure—I plead—that the Government consider covering the costs of the private prescriptions for the most vulnerable children in our country suffering from severe epilepsy who need this medication, until the Government find a solution with the bodies and particularly the medical profession.
In conclusion, I urge my colleagues in Government to consider the recommendations that I and other colleagues across the House have made and are making here today, as well as listening to the families affected. While I appreciate the good work that the Government have done on this issue, they can and should go further. I and many colleagues across the House will continue to champion this matter: better access to medicinal cannabis on the NHS for my constituents, all the constituents affected across our country and all the children suffering from this awful illness, so that they get the drugs necessary, free at the point of need on the NHS.
17:15:39
in the Chair
Hannah Bardell
Before I call speakers, I want to acknowledge those who are with us in the Chamber today and those who are watching. I also acknowledge the importance of this subject. Because it is such an important subject and I want to call the Front Bench by 5.34 pm, with the Labour and Scottish National party spokespersons having five minutes each, I will impose an initial time limit of four minutes to ensure that every Member has the opportunity to represent this very important issue.
17:15:42
Andy McDonald
Middlesbrough
It is a pleasure to see you in the Chair this afternoon, Ms Bardell. I pay tribute to the hon. Member for South Leicestershire (Alberto Costa) for securing this debate, for his articulate and forensic analysis, and for the coherent account we have heard from him.
It is three years since we were able to celebrate the change in the law that should have helped the children and families we have been hearing from this week. Sadly, after three long years, they are no further forward. As we have heard, since 2018, only three NHS prescriptions have been issued for the type of medical cannabis that was shown to be so life-transforming for the likes of the then six-year-old Alfie Dingley, whom the hon. Member spoke of earlier. It was Alfie and his mum who were at the forefront of this campaign. They and many others achieved the change in the law that they had all worked so hard for.
Heartbreakingly, while the law has changed, it has not been properly implemented and utilised for those crying out for help. Families have been left at breaking point emotionally and financially, having to find up to £2,000 a month to pay privately for this medicine. I cannot begin to imagine how on earth these loving parents cope with such massive monthly costs— £2,000 a month is the equivalent of an additional and very substantial mortgage. In fact, it would dwarf many people’s mortgage payments. Not even we MPs on over £80,000 a year could cope with that. How on earth can we expect those families to withstand such huge costs, simply trying to keep their children alive and free from the ravages of seizures by accessing a known and proven prescriptive solution?
That these families cannot secure NHS prescriptions for their children, when it has been proved beyond any doubt that cannabis is efficacious, is a monumental shame. The campaign group that the hon. Member mentioned, End Our Pain, rightly said that this saga has dragged on for far too long. Those families have petitioned, marched and campaigned with such dignity. They should not and must not be ignored.
The new Secretary of State for Health and Social Care was pivotal in the change in law when he was Home Secretary. I urge him and his Department to give effect to that change and remove all barriers to getting medical cannabis to those patients. The campaigning families will do whatever it takes to help Government remove any barriers to doing the right thing and give them and their loved ones access to medical cannabis as they would any other therapeutic drug.
We lost our 16-year-old son to epilepsy over 15 years ago. I do not know whether medical cannabis would have helped him, had we even known about it then, but I will do everything I can to assist these families in their determination to get the medication that their children need. The memory of seeing our beloved Rory locked in status; to hear my wife scream for me to get an ambulance; to see the paramedics come upstairs to his bedroom; to hear the consultant in the hospital tell us that we better call a priest; and to hold my child as he died is something that I never want any of these families to suffer. I beg the Government to do the right thing and remove whatever barriers there may be and guarantee them access to this life-changing, life-saving treatment.
It is three years since we were able to celebrate the change in the law that should have helped the children and families we have been hearing from this week. Sadly, after three long years, they are no further forward. As we have heard, since 2018, only three NHS prescriptions have been issued for the type of medical cannabis that was shown to be so life-transforming for the likes of the then six-year-old Alfie Dingley, whom the hon. Member spoke of earlier. It was Alfie and his mum who were at the forefront of this campaign. They and many others achieved the change in the law that they had all worked so hard for.
Heartbreakingly, while the law has changed, it has not been properly implemented and utilised for those crying out for help. Families have been left at breaking point emotionally and financially, having to find up to £2,000 a month to pay privately for this medicine. I cannot begin to imagine how on earth these loving parents cope with such massive monthly costs— £2,000 a month is the equivalent of an additional and very substantial mortgage. In fact, it would dwarf many people’s mortgage payments. Not even we MPs on over £80,000 a year could cope with that. How on earth can we expect those families to withstand such huge costs, simply trying to keep their children alive and free from the ravages of seizures by accessing a known and proven prescriptive solution?
That these families cannot secure NHS prescriptions for their children, when it has been proved beyond any doubt that cannabis is efficacious, is a monumental shame. The campaign group that the hon. Member mentioned, End Our Pain, rightly said that this saga has dragged on for far too long. Those families have petitioned, marched and campaigned with such dignity. They should not and must not be ignored.
The new Secretary of State for Health and Social Care was pivotal in the change in law when he was Home Secretary. I urge him and his Department to give effect to that change and remove all barriers to getting medical cannabis to those patients. The campaigning families will do whatever it takes to help Government remove any barriers to doing the right thing and give them and their loved ones access to medical cannabis as they would any other therapeutic drug.
We lost our 16-year-old son to epilepsy over 15 years ago. I do not know whether medical cannabis would have helped him, had we even known about it then, but I will do everything I can to assist these families in their determination to get the medication that their children need. The memory of seeing our beloved Rory locked in status; to hear my wife scream for me to get an ambulance; to see the paramedics come upstairs to his bedroom; to hear the consultant in the hospital tell us that we better call a priest; and to hold my child as he died is something that I never want any of these families to suffer. I beg the Government to do the right thing and remove whatever barriers there may be and guarantee them access to this life-changing, life-saving treatment.
17:20:16
Sir Mike Penning
Hemel Hempstead
May I say what a moving speech that was by the hon. Member for Middlesbrough (Andy McDonald)? That sort of personal experience is exactly what this issue is all about.
I came into politics to help. To my knowledge, I do not have a single constituent who benefits from a prescription for medical cannabis, but that does not make it any less important that I campaign on behalf of the all-party parliamentary group. I could not disagree with a single word in the speech by my hon. Friend the Member for South Leicestershire (Alberto Costa), who succeeded me as co-chair when I stepped down. It was the most coherent speech on the subject I have heard in a long time.
In 2015, as the Home Office Minister responsible for drug policy in Government, and sat where the Minister is sitting now, I made a speech saying that the Government were minded to allow the prescribed medical use of cannabis. I did not say that for the sake of it; I said it because the then Home Secretary, my right hon. Friend the Member for Maidenhead (Mrs May), gave me permission to do so. She went on to be Prime Minister, and one of the reasons why Alfie got his medication, and why the Caldwell family’s campaign was so successful in the Province, was that she picked the issue up and said, “We are going to do something about this.” In 2018, the then Home Secretary was able to change the law for that reason.
I say to all colleagues, and to anybody listening to the debate, that this issue is not about rolling a cannabis joint. It is not about reforming drug law in this country. It is about a group of children, some of whom have clicked over into adulthood now, who may well not have been here today were it not for some very brave consultants turning their backs on what the profession was telling them to do, and doing instead what was right for those children. Those consultants have come under enormous pressure not to sign the prescriptions.
When we drafted the legislation, we were very careful to ensure that it was not up to GPs alone to issue the prescriptions. We did not want to get into another opioid situation—I will not say that opioids are prescribed willy-nilly, because that would be unfair, but we know there is an opioid epidemic. We specifically said that the GP had to refer the child to a specialist, and that it would be for the specialist to decide. A few have been brave enough to do so.
Sadly, as my hon. Friend the Member for South Leicestershire mentioned, and as the parents were telling us only yesterday when they were here lobbying colleagues, some of those consultants are retiring, and of those who want to prescribe medical cannabis, some are too frightened that they will be referred to the professional body. If they do prescribe it, their employers are refusing to honour the prescription. I thought we had an NHS that was free at the point of delivery when an NHS prescription is issued.
I have no notes—I have no need for them. I have discussed this issue so many times in this Chamber, as well as in the main Chamber, where I will be tomorrow. Politicians get it; Secretaries of State get it; the Minister gets it. But parts of the medical profession do not get that they are responsible for keeping these young children alive, and that they need to get off their butts and do so.
I came into politics to help. To my knowledge, I do not have a single constituent who benefits from a prescription for medical cannabis, but that does not make it any less important that I campaign on behalf of the all-party parliamentary group. I could not disagree with a single word in the speech by my hon. Friend the Member for South Leicestershire (Alberto Costa), who succeeded me as co-chair when I stepped down. It was the most coherent speech on the subject I have heard in a long time.
In 2015, as the Home Office Minister responsible for drug policy in Government, and sat where the Minister is sitting now, I made a speech saying that the Government were minded to allow the prescribed medical use of cannabis. I did not say that for the sake of it; I said it because the then Home Secretary, my right hon. Friend the Member for Maidenhead (Mrs May), gave me permission to do so. She went on to be Prime Minister, and one of the reasons why Alfie got his medication, and why the Caldwell family’s campaign was so successful in the Province, was that she picked the issue up and said, “We are going to do something about this.” In 2018, the then Home Secretary was able to change the law for that reason.
I say to all colleagues, and to anybody listening to the debate, that this issue is not about rolling a cannabis joint. It is not about reforming drug law in this country. It is about a group of children, some of whom have clicked over into adulthood now, who may well not have been here today were it not for some very brave consultants turning their backs on what the profession was telling them to do, and doing instead what was right for those children. Those consultants have come under enormous pressure not to sign the prescriptions.
When we drafted the legislation, we were very careful to ensure that it was not up to GPs alone to issue the prescriptions. We did not want to get into another opioid situation—I will not say that opioids are prescribed willy-nilly, because that would be unfair, but we know there is an opioid epidemic. We specifically said that the GP had to refer the child to a specialist, and that it would be for the specialist to decide. A few have been brave enough to do so.
Sadly, as my hon. Friend the Member for South Leicestershire mentioned, and as the parents were telling us only yesterday when they were here lobbying colleagues, some of those consultants are retiring, and of those who want to prescribe medical cannabis, some are too frightened that they will be referred to the professional body. If they do prescribe it, their employers are refusing to honour the prescription. I thought we had an NHS that was free at the point of delivery when an NHS prescription is issued.
I have no notes—I have no need for them. I have discussed this issue so many times in this Chamber, as well as in the main Chamber, where I will be tomorrow. Politicians get it; Secretaries of State get it; the Minister gets it. But parts of the medical profession do not get that they are responsible for keeping these young children alive, and that they need to get off their butts and do so.
17:23:49
Ian Byrne
Liverpool, West Derby
It is an honour to serve under your chairship, Ms Bardell. I thank the hon. Member for South Leicestershire (Alberto Costa) for securing this incredibly important debate and for his extremely powerful contribution. I am also grateful for the other contributions that we have heard, especially that of my great friend, the hon. Member for Middlesbrough (Andy McDonald).
I pay tribute to those of my Liverpool, West Derby constituents who are living through the devastating consequences caused by the lack of access to medicinal cannabis. I pay tribute to the families, their friends and all those in our community who have campaigned relentless for those people. They should not have to fight that hard and they should not have to endure so much. It was a real privilege to meet some of the campaigners at the End Our Pain event. One of my constituents wanted to be there, but it is extremely difficult for her to be away from her child at the moment—their time together is so precious.
I was proud to sign End Our Pain’s letter to the Prime Minister and Secretary of State yesterday, which asked for immediate action to find a way to help the families with children with severe epilepsy, who continue to be denied NHS access to medical cannabis, as we have heard so powerfully so far. I know that the Minister was listening intently, and I can see the empathy in her eyes. I urge her, on behalf of my constituents, to take immediate steps and do whatever it takes to help these families. I ask that the Minister intervene to help adults who require access to medical cannabis under NHS prescriptions. I spoke to some families yesterday. There are siblings going through the same unimaginable pain. I am happy to discuss this at any time with the Minister.
The law was changed on 1 November 2018 to allow access to medical cannabis under prescription. This brought hope to many families. In my first meeting after becoming an MP in 2019, I spoke to families and they had an air of optimism. They thought there was change coming, but the reality three years on, as so eloquently put by the hon. Member for South Leicestershire, is that only three NHS prescriptions have been written for whole-extract cannabis oil. Families are having to raise £2,000 a month to buy this medicine privately.
We need to remember that we are in the middle of a pandemic, so funds that those families had raised previously had gone. The people I spoke to yesterday were talking about mortgaging or selling their house, doing whatever they can to raise the money. Tragically and heartbreakingly, there are families who believe that this medicine will help their child, but they will not put the child on it because of the limitations to starting the process and having to take the child off, as well as the financial issues. I cannot imagine what is going through their minds.
My constituent Lauren wrote to me last night. Although I cannot do full justice to everything she put in the email, I would like to impress on the Minister just some of what she is going through and what she is asking from the Government. She says:
“My time together with my son is precious, and I shouldn’t have to keep fighting. I want to make memories for whatever time we have left. In March NICE reiterated their guidelines about prescribing medical cannabis and these guidelines are certainly not being enacted. The Health Secretary must help now before it’s too late. Allow GPs to prescribe, and if that can’t be done instantly, then establish an emergency fund for the children already benefiting from private prescriptions.”
Lauren is a truly awe-inspiring mum and campaigner, like many I met yesterday. Her asks are simple and need to be listened to. Families are being pushed from pillar to post, and this injustice cannot continue. The interests of patients should be put first, and the system must start delivering the enormous benefits that this medicine can offer.
I pay tribute to those of my Liverpool, West Derby constituents who are living through the devastating consequences caused by the lack of access to medicinal cannabis. I pay tribute to the families, their friends and all those in our community who have campaigned relentless for those people. They should not have to fight that hard and they should not have to endure so much. It was a real privilege to meet some of the campaigners at the End Our Pain event. One of my constituents wanted to be there, but it is extremely difficult for her to be away from her child at the moment—their time together is so precious.
I was proud to sign End Our Pain’s letter to the Prime Minister and Secretary of State yesterday, which asked for immediate action to find a way to help the families with children with severe epilepsy, who continue to be denied NHS access to medical cannabis, as we have heard so powerfully so far. I know that the Minister was listening intently, and I can see the empathy in her eyes. I urge her, on behalf of my constituents, to take immediate steps and do whatever it takes to help these families. I ask that the Minister intervene to help adults who require access to medical cannabis under NHS prescriptions. I spoke to some families yesterday. There are siblings going through the same unimaginable pain. I am happy to discuss this at any time with the Minister.
The law was changed on 1 November 2018 to allow access to medical cannabis under prescription. This brought hope to many families. In my first meeting after becoming an MP in 2019, I spoke to families and they had an air of optimism. They thought there was change coming, but the reality three years on, as so eloquently put by the hon. Member for South Leicestershire, is that only three NHS prescriptions have been written for whole-extract cannabis oil. Families are having to raise £2,000 a month to buy this medicine privately.
We need to remember that we are in the middle of a pandemic, so funds that those families had raised previously had gone. The people I spoke to yesterday were talking about mortgaging or selling their house, doing whatever they can to raise the money. Tragically and heartbreakingly, there are families who believe that this medicine will help their child, but they will not put the child on it because of the limitations to starting the process and having to take the child off, as well as the financial issues. I cannot imagine what is going through their minds.
My constituent Lauren wrote to me last night. Although I cannot do full justice to everything she put in the email, I would like to impress on the Minister just some of what she is going through and what she is asking from the Government. She says:
“My time together with my son is precious, and I shouldn’t have to keep fighting. I want to make memories for whatever time we have left. In March NICE reiterated their guidelines about prescribing medical cannabis and these guidelines are certainly not being enacted. The Health Secretary must help now before it’s too late. Allow GPs to prescribe, and if that can’t be done instantly, then establish an emergency fund for the children already benefiting from private prescriptions.”
Lauren is a truly awe-inspiring mum and campaigner, like many I met yesterday. Her asks are simple and need to be listened to. Families are being pushed from pillar to post, and this injustice cannot continue. The interests of patients should be put first, and the system must start delivering the enormous benefits that this medicine can offer.
Patrick Grady
Glasgow North
It is a pleasure, once again, to serve under your chairmanship this afternoon, Ms Bardell. I would not often say that I agree with every word said by a Conservative Member, but in the case of the hon. Member for South Leicestershire (Alberto Costa), it is accurate. He gave an incredibly considered speech. It is great to hear the consensus that exists in this room.
We have today’s debate, my hon. Friend the Member for Inverclyde (Ronnie Cowan) has a more general debate tomorrow on the medical use of cannabis, rather than in cases of epilepsy, and the hon. Member for Manchester, Withington (Jeff Smith) has introduced a private Member’s Bill on the issue. That shows the cross-party consensus, the momentum and the urgency of the issue. Everyone today is speaking about their constituents’ experiences. I pay tribute to all the families and campaigners who have come forward and are prepared to speak out. I met with some yesterday at the End Our Pain lobby. Plenty of my own constituents have lobbied on the issue, because they have been moved by the stories they have heard, and I have a particular case.
The name of the campaign, End Our Pain, says so much. It is the pain that the individual children, and the adults, are experiencing with their medical conditions. It is the psychological pain the families are going through as well, having to watch the physical pain that their children are suffering. All that pain can be, at the very least, mitigated, if some of the steps that we have heard about are properly taken.
I have spoken previously about my constituents John and Laura and their beautiful daughter Bláthnaid, who is affected by Aicadri syndrome, which is a very severe and rare form of epilepsy. There are only several thousand cases worldwide. It is very difficult for clinicians to know what might or might not work. It is incredibly distressing for both the parents and the children, who do not understand what is happening when they go through these seizures. Many of the conventional medicines that are tried have their own side effects that cause particular difficulties, or resistance builds up, which increases a different kind of suffering.
We have today’s debate, my hon. Friend the Member for Inverclyde (Ronnie Cowan) has a more general debate tomorrow on the medical use of cannabis, rather than in cases of epilepsy, and the hon. Member for Manchester, Withington (Jeff Smith) has introduced a private Member’s Bill on the issue. That shows the cross-party consensus, the momentum and the urgency of the issue. Everyone today is speaking about their constituents’ experiences. I pay tribute to all the families and campaigners who have come forward and are prepared to speak out. I met with some yesterday at the End Our Pain lobby. Plenty of my own constituents have lobbied on the issue, because they have been moved by the stories they have heard, and I have a particular case.
The name of the campaign, End Our Pain, says so much. It is the pain that the individual children, and the adults, are experiencing with their medical conditions. It is the psychological pain the families are going through as well, having to watch the physical pain that their children are suffering. All that pain can be, at the very least, mitigated, if some of the steps that we have heard about are properly taken.
I have spoken previously about my constituents John and Laura and their beautiful daughter Bláthnaid, who is affected by Aicadri syndrome, which is a very severe and rare form of epilepsy. There are only several thousand cases worldwide. It is very difficult for clinicians to know what might or might not work. It is incredibly distressing for both the parents and the children, who do not understand what is happening when they go through these seizures. Many of the conventional medicines that are tried have their own side effects that cause particular difficulties, or resistance builds up, which increases a different kind of suffering.
17:29:49
Sir Mike Penning
Is the hon. Gentleman aware that doctors are prescribing off-label drugs that work for adults, particularly steroids, to these children, but they are not willing to look at medical cannabis?
Patrick Grady
Yes, and a few years ago we had the Off-patent Drugs Bill, which sadly did not make as much progress as it could have done. That had the potential to give doctors more freedom, which is clearly one of the messages coming out of the debate. Of course there will be an element of risk, but there has to be a way of managing and mitigating it so that doctors can feel more confident about prescribing cannabis-derived treatments.
When my constituents see the positive effects that CBD can have, they wonder what effects a drug with THC might have. When they see the benefits to other children, even though every case and condition is unique, the potential must exist there, and when the alternative is to go private and pay incredible amounts of money, which is not without its own risk, the frustration becomes very real, so the Government have to speed up the trials and the opportunity for people to take part in them. They have to look at how the licensing can improve and how we can increase the confidence of doctors. Above all, they have to listen to the voices of parents and patients, and their carers and advocates in Parliament.
When my constituents see the positive effects that CBD can have, they wonder what effects a drug with THC might have. When they see the benefits to other children, even though every case and condition is unique, the potential must exist there, and when the alternative is to go private and pay incredible amounts of money, which is not without its own risk, the frustration becomes very real, so the Government have to speed up the trials and the opportunity for people to take part in them. They have to look at how the licensing can improve and how we can increase the confidence of doctors. Above all, they have to listen to the voices of parents and patients, and their carers and advocates in Parliament.
17:32:38
Christine Jardine
Edinburgh West
It is a pleasure to serve under your chairmanship, Ms Bardell. The debate is a bit like groundhog day for many of us—Members will forgive the expression. We have made the arguments about the children in our constituencies, and about the pain that their families are going through, knowing that there is a drug that not only can but does help them. In my constituency, Murray Gray has been transformed from a wee boy who was constantly ill, in and out of hospital and missing school, and whose parents feared for his life almost daily, to a happy wee boy who pays football with his dad, and has been to my office and explained to me exactly what dinosaurs are—not that I am one of them.
Seeing that transformation makes me only more determined to give what support I can. For me, and I am sure for many others, the question remains: why did the Government make medicinal cannabis legal if they did not intend it to be for the benefit of these children? I am sure that they did. When the then Home Secretary made that move, I am sure that the motivation was to improve the lives of these children, so why are the Government not taking the last step to encourage the medical profession to make that happen?
Seeing that transformation makes me only more determined to give what support I can. For me, and I am sure for many others, the question remains: why did the Government make medicinal cannabis legal if they did not intend it to be for the benefit of these children? I am sure that they did. When the then Home Secretary made that move, I am sure that the motivation was to improve the lives of these children, so why are the Government not taking the last step to encourage the medical profession to make that happen?
17:33:45
Adam Afriyie
Windsor
I met the father of Jorja Emerson the other day. He was literally in tears because his lovely daughter has multiple fits daily. The frustration is that the last remaining consultant who could make the prescriptions has retired. There is a real danger that some of these children will no longer have access to a drug that the Government intend them to have access to. I hope that the Minister has heard my intervention.
Christine Jardine
The hon. Member makes a pertinent point. This is the nub of the issue: we need consultants to be encouraged and enabled to write national health service prescriptions for these children. We have pestered the Government and will go on pestering the Government. There will be no resting place for them on this issue until we have the assurance that these children will get the help that I am sure that the Government originally intended them to have, and that is still just outwith their reach.
17:34:35
Ronnie Cowan
Inverclyde
I congratulate the hon. Member for South Leicestershire (Alberto Costa) on securing the debate. It is great to see a Minister from the Department of Health and Social Care responding today, because for far too long we have been talking to the Home Office about these issues. I believe that the Minister is an ex-nurse, if there is such a thing; perhaps it is “Once a nurse, always a nurse.”
Yesterday in Portcullis House, family members came to tell us their heart-rending stories, yet again. As we politicians listened, the feeling of, “What can we do?” sank into us. We went over to No.10 Downing Street and delivered a letter—another letter—explaining the situation to the Prime Minister. During the course of the day I talked to a number of parents, and one of them asked me a question that I have been asked many times, but every single time it hits home: “What would you do if it was your child? What would you do if your child was suffering 30 seizures and more a day? Would you reach for the rulebook, or reach for the medicine— if you could afford it, because right now, in this country, if you cannot afford it, you are not getting it?”.
There have been only three NHS prescriptions, as was mentioned, despite the now Health Secretary promising to do everything he could to help. I am fascinated by that; three means that there is precedent. We have broken the dam. If there were none, it would be a different argument—but there have been three. Why not 30? Why not 300? Why are we still scrambling around for these things? Hannah Deacon, who has been mentioned often in this debate, and whose son Alfie is in receipt of one of those NHS prescriptions, has written to the Health Secretary three times asking him to help, as he promised to do when, as Home Secretary, he wrote to her. All three letters have gone unanswered. Some politicians are hiding behind medical professionals, and some in the medical profession are hiding behind politicians. The parents of these children have no place to hide. They have to manage the reality of the situation day in, day out. We need progress. We need to accept the validity of real world evidence. Asking kids to take part in trials with a placebo is abhorrent.
Many barriers would be broken if GPs were allowed to prescribe medical cannabis. At the moment, they cannot initiate prescriptions but can follow up. Cannabis is largely a GP medicine, given its efficacy in GP conditions such as pain and anxiety. It would be of enormous help to allow GPs to initiate prescriptions. A recent survey showed that about a quarter of GPs would be happy to prescribe it. This would require a simple change to the relevant misuse of drugs statutory instrument; it would not require parliamentary time.
I look forward to tackling this issue in much more detail tomorrow in the Chamber. I hope that we can investigate all the problems, and ultimately come up with solutions. We have talked round and round this subject for a long time. Three years and three months on from a promise by the UK Government to make medical cannabis available, we are still no further on. It is a crying shame that these people are still living in hope—living, I have to say, in desperation at the situation they find themselves in. They are looking to us politicians to do something about this. In my privileged position, I am sick to death of having to say to those people that we are no further forward.
Please, Minister, take on board what we have heard today. Politicians are asking the Minister, cross-party—a very rare thing—to look at the situation and do what she can, now and in the longer term. On what could be done now, if there was a fund that we could reach into to pay for these prescriptions, that would be a massive step forward, including for the parents and guardians of these children, who, day in and day out, are asking us to do something for them.
Yesterday in Portcullis House, family members came to tell us their heart-rending stories, yet again. As we politicians listened, the feeling of, “What can we do?” sank into us. We went over to No.10 Downing Street and delivered a letter—another letter—explaining the situation to the Prime Minister. During the course of the day I talked to a number of parents, and one of them asked me a question that I have been asked many times, but every single time it hits home: “What would you do if it was your child? What would you do if your child was suffering 30 seizures and more a day? Would you reach for the rulebook, or reach for the medicine— if you could afford it, because right now, in this country, if you cannot afford it, you are not getting it?”.
There have been only three NHS prescriptions, as was mentioned, despite the now Health Secretary promising to do everything he could to help. I am fascinated by that; three means that there is precedent. We have broken the dam. If there were none, it would be a different argument—but there have been three. Why not 30? Why not 300? Why are we still scrambling around for these things? Hannah Deacon, who has been mentioned often in this debate, and whose son Alfie is in receipt of one of those NHS prescriptions, has written to the Health Secretary three times asking him to help, as he promised to do when, as Home Secretary, he wrote to her. All three letters have gone unanswered. Some politicians are hiding behind medical professionals, and some in the medical profession are hiding behind politicians. The parents of these children have no place to hide. They have to manage the reality of the situation day in, day out. We need progress. We need to accept the validity of real world evidence. Asking kids to take part in trials with a placebo is abhorrent.
Many barriers would be broken if GPs were allowed to prescribe medical cannabis. At the moment, they cannot initiate prescriptions but can follow up. Cannabis is largely a GP medicine, given its efficacy in GP conditions such as pain and anxiety. It would be of enormous help to allow GPs to initiate prescriptions. A recent survey showed that about a quarter of GPs would be happy to prescribe it. This would require a simple change to the relevant misuse of drugs statutory instrument; it would not require parliamentary time.
I look forward to tackling this issue in much more detail tomorrow in the Chamber. I hope that we can investigate all the problems, and ultimately come up with solutions. We have talked round and round this subject for a long time. Three years and three months on from a promise by the UK Government to make medical cannabis available, we are still no further on. It is a crying shame that these people are still living in hope—living, I have to say, in desperation at the situation they find themselves in. They are looking to us politicians to do something about this. In my privileged position, I am sick to death of having to say to those people that we are no further forward.
Please, Minister, take on board what we have heard today. Politicians are asking the Minister, cross-party—a very rare thing—to look at the situation and do what she can, now and in the longer term. On what could be done now, if there was a fund that we could reach into to pay for these prescriptions, that would be a massive step forward, including for the parents and guardians of these children, who, day in and day out, are asking us to do something for them.
17:39:58
Liz Kendall
Leicester West
It is a pleasure to serve under your chairmanship, Ms Bardell. I congratulate the hon. Member for South Leicestershire (Alberto Costa) on securing this important debate. We have worked together over many years on health issues, and he has done very important work alongside my hon. Friend the Member for Gower (Tonia Antoniazzi) through the all-party parliamentary group on medical cannabis under prescription.
I start by saying to those who have spoken in the debate and those watching elsewhere that I cannot begin to imagine how difficult it must be to be the parent of a child with serious epilepsy. The fear that they go through every day, and the difficulties that they experience, must be beyond terrifying. I also recognise the huge financial burdens that many parents face, and the anxiety of parents who want access to these prescriptions, but are still denied it.
As the hon. Member for South Leicestershire said, it has been three years since the then Home Secretary, now Health Secretary, changed the law on this very important issue. As we all know, that change came about after a number of very high-profile campaigns in utterly heartbreaking cases of children suffering from epilepsy, including Billy Caldwell and Alfie Dingley. I pay tribute to the families who campaigned relentlessly on these issues. It gave hope to people that things would change. Yet three years later, we do not seem to be very much further forward. As the hon. Member for South Leicestershire said, the law has changed, but the practice has not.
I will focus on three things that need to happen to put this right. The first, which many hon. Members have spoken about, is the desperate need for more research and evidence. One of the barriers to clinicians prescribing is that they feel they lack knowledge, or are not really sure about the evidence on both the benefits and the risks. That point has been made time and again over the last three years. It was made during the original review, back in 2018, particularly by the Advisory Council on the Misuse of Drugs. It was repeated by the Health and Social Care Committee in its review of why things had not changed, back in 2019. Six of its 11 recommendations were about providing more research and evidence. Indeed, that was called for by the then chief scientific adviser, now chief medical officer, Professor Chris Whitty, and in the NHS England review commissioned by the last Health Secretary, the right hon. Member for West Suffolk (Matt Hancock).
I hope that the Minister will say where we have got to on that issue, and particularly on the point about more research and evidence from clinical trials being needed. However, that last point absolutely cannot mean taking children off these products if they are on them; that would be completely wrong. How will she make progress on all those issues?
Secondly, what other steps are being taken to improve access? I will focus briefly on three of the 10 recommendations made by NHS England. One was that the national medical director and chief pharmaceutical officer for England should write to doctors and pharmacists, reminding them of the guidance on prescribing, how they can access a cannabis education package produced by Health Education England, and how to get the message out about what can happen at present. NHS England also recommended much clearer information for patients, and that a specialist clinical network be established, so that everybody is aware of the real evidence. Could the Minister comment on what further action the Government have taken on that?
Finally, a really difficult but important point: as we move forward with the research and evidence, and as we try to improve understanding among all professionals—GPs as well as specialists, because we can have a partnership approach—what will we do to support those parents who are paying such huge amounts of money? Have the Government considered what support might be made available to them?
Changing the law is essential, but getting that to work in practice—changing hearts and minds, as well as the law—is the only way we will make progress. I thank all right hon. and hon. Members who have spoken. I hope that the parents out there listening know that they have champions in this place, and that we will carry on doing our best to make sure we get the best results for their children.
I start by saying to those who have spoken in the debate and those watching elsewhere that I cannot begin to imagine how difficult it must be to be the parent of a child with serious epilepsy. The fear that they go through every day, and the difficulties that they experience, must be beyond terrifying. I also recognise the huge financial burdens that many parents face, and the anxiety of parents who want access to these prescriptions, but are still denied it.
As the hon. Member for South Leicestershire said, it has been three years since the then Home Secretary, now Health Secretary, changed the law on this very important issue. As we all know, that change came about after a number of very high-profile campaigns in utterly heartbreaking cases of children suffering from epilepsy, including Billy Caldwell and Alfie Dingley. I pay tribute to the families who campaigned relentlessly on these issues. It gave hope to people that things would change. Yet three years later, we do not seem to be very much further forward. As the hon. Member for South Leicestershire said, the law has changed, but the practice has not.
I will focus on three things that need to happen to put this right. The first, which many hon. Members have spoken about, is the desperate need for more research and evidence. One of the barriers to clinicians prescribing is that they feel they lack knowledge, or are not really sure about the evidence on both the benefits and the risks. That point has been made time and again over the last three years. It was made during the original review, back in 2018, particularly by the Advisory Council on the Misuse of Drugs. It was repeated by the Health and Social Care Committee in its review of why things had not changed, back in 2019. Six of its 11 recommendations were about providing more research and evidence. Indeed, that was called for by the then chief scientific adviser, now chief medical officer, Professor Chris Whitty, and in the NHS England review commissioned by the last Health Secretary, the right hon. Member for West Suffolk (Matt Hancock).
I hope that the Minister will say where we have got to on that issue, and particularly on the point about more research and evidence from clinical trials being needed. However, that last point absolutely cannot mean taking children off these products if they are on them; that would be completely wrong. How will she make progress on all those issues?
Secondly, what other steps are being taken to improve access? I will focus briefly on three of the 10 recommendations made by NHS England. One was that the national medical director and chief pharmaceutical officer for England should write to doctors and pharmacists, reminding them of the guidance on prescribing, how they can access a cannabis education package produced by Health Education England, and how to get the message out about what can happen at present. NHS England also recommended much clearer information for patients, and that a specialist clinical network be established, so that everybody is aware of the real evidence. Could the Minister comment on what further action the Government have taken on that?
Finally, a really difficult but important point: as we move forward with the research and evidence, and as we try to improve understanding among all professionals—GPs as well as specialists, because we can have a partnership approach—what will we do to support those parents who are paying such huge amounts of money? Have the Government considered what support might be made available to them?
Changing the law is essential, but getting that to work in practice—changing hearts and minds, as well as the law—is the only way we will make progress. I thank all right hon. and hon. Members who have spoken. I hope that the parents out there listening know that they have champions in this place, and that we will carry on doing our best to make sure we get the best results for their children.
in the Chair
Hannah Bardell
Before I call the Minister, I say gently and kindly to her that I would expect her to finish by 5.44 pm, so that I may call the hon. Member for South Leicestershire (Alberto Costa) to sum up for two minutes.
17:43:14
Maria Caulfield
The Parliamentary Under-Secretary of State for Health and Social Care
I would like to start by congratulating my hon. Friend the Member for South Leicestershire (Alberto Costa) on securing the debate. He lobbies on this issue almost daily, representing constituents such as Maya and Evelina so well. I fully appreciate the strength of feeling and the impact that this issue has on some of the most vulnerable children in their daily struggle with drug-resistant epilepsy. That is why, three years ago, my right hon. Friend the Secretary of State for Health and Social Care, who was then Home Secretary, changed the law to recognise the need to allow unlicensed cannabis-based products to be prescribed by specialist doctors. The Government are supportive and have used many levers, which has been quite challenging at times.
My right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) hit the nail on the head when he said that this is now more a clinical issue than a political one. In many cases, doctors are unwilling to prescribe medicinal cannabis; we heard from a number of Members that we may be down to just one clinician left who is willing to do that. The main reason is that these products are still unlicensed. The way that medicine works in this country is that the Medicines and Healthcare Products Regulatory Agency will license a product after significant research, not just into the efficacy—we have heard from many Members that there is a strong feeling that these medicines work—but into the adverse events and potential side effects. In prescribing these medications, the clinicians will take responsibility both for the drugs working and for any impact of those drugs.
My right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) hit the nail on the head when he said that this is now more a clinical issue than a political one. In many cases, doctors are unwilling to prescribe medicinal cannabis; we heard from a number of Members that we may be down to just one clinician left who is willing to do that. The main reason is that these products are still unlicensed. The way that medicine works in this country is that the Medicines and Healthcare Products Regulatory Agency will license a product after significant research, not just into the efficacy—we have heard from many Members that there is a strong feeling that these medicines work—but into the adverse events and potential side effects. In prescribing these medications, the clinicians will take responsibility both for the drugs working and for any impact of those drugs.
17:46:45
Sir Mike Penning
This is the argument that always comes up in the briefings for Ministers. If it is not safe, how are prescriptions being given for free on the NHS? If it is safe, give it to the rest of them. It cannot be right that time and again Ministers use the argument about safety, when prescriptions are given free on the NHS.
17:49:12
Maria Caulfield
These are clinical decisions. No one is saying that these products are not safe, but there is not the evidence base to get the licence. The MHRA does this for every single medicine, not just medicinal cannabis.
I want to set out how we can get to a place where we can get these drugs licensed and clinicians will feel confident in prescribing them. We recognise that, for many children, these drugs improve their quality of life—individuals have reported improvements—but without that research evidence base, the MHRA will not give a licence. The MHRA is an independent body—it is not controlled by the Government—and the clinicians will take advice and guidance from it. We may agree or disagree with how the MHRA licenses a medicine, but that is the process for all drugs. It is not just the MHRA—no country in the world has licensed this product. The Food and Drug Administration has not; the European Medicines Agency has not; the MHRA has not. The solution is in pushing the clinical research needed for a licence to be granted, which would open up prescribing for clinicians around the country.
I want to set out how we can get to a place where we can get these drugs licensed and clinicians will feel confident in prescribing them. We recognise that, for many children, these drugs improve their quality of life—individuals have reported improvements—but without that research evidence base, the MHRA will not give a licence. The MHRA is an independent body—it is not controlled by the Government—and the clinicians will take advice and guidance from it. We may agree or disagree with how the MHRA licenses a medicine, but that is the process for all drugs. It is not just the MHRA—no country in the world has licensed this product. The Food and Drug Administration has not; the European Medicines Agency has not; the MHRA has not. The solution is in pushing the clinical research needed for a licence to be granted, which would open up prescribing for clinicians around the country.
17:48:57
Andy McDonald
Do the Minister and the MHRA not recognise that there is an abundance of practical evidence from the families who have scrimped and saved and raised money through charitable activities to fund the administration of the drug, and that it works? Surely that is persuasive. These families have not got time to wait for the research that the Minister is talking about, and I am yet to hear anybody tell me what harm would be done if that drug were to be given to those who need it and want it.
17:49:15
Maria Caulfield
There are concerns, particularly around the THC element, that there could be some effect on the developing brain and on heart conditions. Research is needed not just on the effect of the drugs, but on their safety.
I want to point out that the Government have made funds available for good-quality research. That does not have to be done by the manufacturers; it can be done by charities, clinicians or researchers. A range of people can come forward to carry out clinical research. The MHRA—
I want to point out that the Government have made funds available for good-quality research. That does not have to be done by the manufacturers; it can be done by charities, clinicians or researchers. A range of people can come forward to carry out clinical research. The MHRA—
17:49:34
Ronnie Cowan
Will the Minister give way?
17:49:37
Maria Caulfield
I will not; I have only a couple of minutes left.
The MHRA is well equipped to provide advice to any applicants wishing to conduct clinical trials.
The MHRA is well equipped to provide advice to any applicants wishing to conduct clinical trials.
17:49:45
Christine Jardine
Will the Minister give way?
17:49:47
Maria Caulfield
I have literally got two minutes left.
Currently, 13 trials are ongoing across the United Kingdom. In the previous 12 months, six of the other trials of cannabis-based products were completed, so some research is coming through the pipeline to help with that evidence base. I want to touch on one—the randomised clinical control trial mentioned by my hon. Friend the Member for South Leicestershire.
It is true that one study has three arms, one of which is a placebo. Having worked in clinical research myself, I reassure my hon. Friend that there are strict ethical guidelines for any clinical research. If someone is allocated to the placebo arm but it is clear when monitoring the research that one arm is doing significantly better than another, the trial has to be unblinded. Anyone on a placebo arm is automatically put on the arm that is doing best. I worked on clinical research for breast cancer, when we were trying to get Herceptin licensed, and for some patients that was the quickest way to get the drug. If there is clear evidence that one arm is working far better than others, patients can be moved on to that arm. It is a way of fast-tracking the drug for licensing.
I reassure Members that I absolutely understand the issue. The Government have changed the law to allow use of medical cannabis, but unless we give clinicians the confidence that the drugs, first, work—a feeling that they do seems to be the consensus in the Chamber—and, secondly, have a safety profile, they will not prescribe them. We can debate it forever in the House, but the clinicians have to be convinced. The way to do that is to get the product licensed, and the way to do that is to get good-quality research that the MHRA can look at to feel confident in licensing that drug.
The Government’s view is that there is funding for such research. My commitment to Members present today is that I will work with other colleagues to see whether we can speed up applications for research, encouraging them to come forward. For many Members, that is not the answer that they wanted to hear; they want me to stand up and say, “The drugs will be available tomorrow and we have people to prescribe them.”
Currently, 13 trials are ongoing across the United Kingdom. In the previous 12 months, six of the other trials of cannabis-based products were completed, so some research is coming through the pipeline to help with that evidence base. I want to touch on one—the randomised clinical control trial mentioned by my hon. Friend the Member for South Leicestershire.
It is true that one study has three arms, one of which is a placebo. Having worked in clinical research myself, I reassure my hon. Friend that there are strict ethical guidelines for any clinical research. If someone is allocated to the placebo arm but it is clear when monitoring the research that one arm is doing significantly better than another, the trial has to be unblinded. Anyone on a placebo arm is automatically put on the arm that is doing best. I worked on clinical research for breast cancer, when we were trying to get Herceptin licensed, and for some patients that was the quickest way to get the drug. If there is clear evidence that one arm is working far better than others, patients can be moved on to that arm. It is a way of fast-tracking the drug for licensing.
I reassure Members that I absolutely understand the issue. The Government have changed the law to allow use of medical cannabis, but unless we give clinicians the confidence that the drugs, first, work—a feeling that they do seems to be the consensus in the Chamber—and, secondly, have a safety profile, they will not prescribe them. We can debate it forever in the House, but the clinicians have to be convinced. The way to do that is to get the product licensed, and the way to do that is to get good-quality research that the MHRA can look at to feel confident in licensing that drug.
The Government’s view is that there is funding for such research. My commitment to Members present today is that I will work with other colleagues to see whether we can speed up applications for research, encouraging them to come forward. For many Members, that is not the answer that they wanted to hear; they want me to stand up and say, “The drugs will be available tomorrow and we have people to prescribe them.”
17:52:23
Ronnie Cowan
We have to re-categorise cannabis from schedule 2 to schedule 4. That will open the gateway to medical research. Right now, it is hard for a lot of medical researchers to gain access to the product in the first place.
17:52:47
Maria Caulfield
The licensing process is independent of Government, but we have levers to speed that up to ensure that the research coming through the pipeline—I have outlined some studies already in progress—will help the evidence base. We have been here before with other drugs in other sectors and we have manged to get there. We have another debate on Thursday, at which I am sure Members will press me further, but my commitment is that we will use every lever possible to get the research and the licensing process through, so that doctors across the country feel confident to prescribe this medicine, which makes such a difference to young people’s lives.
17:53:58
Alberto Costa
I thank all Members for contributing this evening. I thank the Minister for her response. Clearly, it is not the response that I was hoping for, but I know that she genuinely wants to find a solution.
I have offered a temporary solution. Doctors are prescribing this medication, but they are prescribing it privately. Many private prescriptions are being given by the medical profession to kids such as Evelina and Maya. My request once again to the Minister in my summing up is about her having a discretionary fund. Why do I know that? Because her predecessor told me so in answer to one of the debates that we had. The Minister has that discretionary fund and the executive authority to permit private prescriptions—which the parents of Evelina and Maya, and all the other parents across the country, have to pay for—to come from that pot, as a temporary solution until the Government, the regulatory bodies, the medicinal bodies and the medical profession sort out the issue.
I will be coming back to the Minister, I am afraid, once again requesting access to that fund.
Question put and agreed to.
Resolved,
That this House has considered medical cannabis under prescription for children with epilepsy.
I have offered a temporary solution. Doctors are prescribing this medication, but they are prescribing it privately. Many private prescriptions are being given by the medical profession to kids such as Evelina and Maya. My request once again to the Minister in my summing up is about her having a discretionary fund. Why do I know that? Because her predecessor told me so in answer to one of the debates that we had. The Minister has that discretionary fund and the executive authority to permit private prescriptions—which the parents of Evelina and Maya, and all the other parents across the country, have to pay for—to come from that pot, as a temporary solution until the Government, the regulatory bodies, the medicinal bodies and the medical profession sort out the issue.
I will be coming back to the Minister, I am afraid, once again requesting access to that fund.
Question put and agreed to.
Resolved,
That this House has considered medical cannabis under prescription for children with epilepsy.
Sitting adjourned.
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