Medical Cannabis under Prescription: Children with Epilepsy

Christine Jardine Excerpts

Wednesday 3rd November 2021 Westminster Hall

[Alberto Costa (South Leicestershire) (Con)]

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.

[Christine Jardine (Edinburgh West) (LD)]

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?

[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.

--- Later in debate ---

[Christine Jardine (Edinburgh West) (LD)]

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?

[Adam Afriyie (Windsor) (Con)]

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.

--- Later in debate ---

[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.

[Christine Jardine]

Will the Minister give way?

[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.”