Medical Cannabis under Prescription: Children with Epilepsy

Alberto Costa 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.

[Tahir Ali (Birmingham, Hall Green) (Lab)]

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?

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[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.

[Hannah Bardell (in the Chair)]

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.

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[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.