Medicinal Cannabis

Alberto Costa Excerpts

Monday 6th September 2021 Commons Chamber

[Alberto Costa (South Leicestershire) (Con)]

I congratulate the hon. Lady on securing this debate. I am co-chair of the all-party parliamentary group for access to medical cannabis under prescription, having taken over from my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning). One of my constituents, Maya, is nine years old and has a rare form of epilepsy. Her family are having to pay up to £2,000 a month for medical cannabis, despite the revisions of the guidance. I thank the Minister, my hon. Friend the Member for Bury St Edmunds (Jo Churchill), who is in her place, for the good work she has already done, and I am very grateful for the correspondence that she and I have exchanged, but does the hon. Member for Edinburgh West (Christine Jardine) agree that the Government can do much more, particularly on liaising with clinical commissioning groups to get this medicinal cannabis to the children who need it?

[Christine Jardine]

I thank the hon. Member for making an excellent point. The APPG has done astonishing work over the past few years in support of this, but yes, the Government could do so much more for those families who know what it is like to get to the end of every month, and of every prescription, and face the huge bills of which he spoke—up to £2,000 a month. The strain and financial burden of that is all on the families. Surely that is not how any of us in this place anticipated it would be or wanted it to be.

When the then Home Secretary agreed that medicinal cannabis would be legal for use in the United Kingdom, I think we all believed that parents would no longer be forced to watch their children suffer, knowing that a treatment was available. What has happened since is heartbreaking. In the intervening years, they have been forced to source medication themselves, sometimes travel abroad—again at huge cost—to collect it, challenge the medical authorities and face rejection and repeated appeals for NHS prescriptions.

Surely no one in this place wants even to contemplate what it would mean to have a loved one—husband, wife, partner, brother, sister, friend or child—who had to pay for the medication they needed simply to go on with day-to-day life. Think of the diabetic without insulin or the asthmatic without an inhaler; this is no different, but it is new. With so much red tape and inflexible guidelines, too many people face being left alone, helpless and simply unable to afford life-changing treatment. In fact, since November 2018, just three NHS prescriptions have been issued for the type of medicinal cannabis that is life-transforming for these children.

Clearly, guidelines are not empowering medical professionals to do the job they want to do and provide the best possible care for their patients, knowing that they have the establishment’s support. Critics often point to the National Institute for Health and Care Excellence and say it has restricted medicinal cannabis, but only a few months ago it said that there was no ban and that prescriptions should be done on a case-by-case basis. Still parents are told that the medical profession does not have the confidence to prescribe the medication because of a lack of evidence and that clinical randomised control trials are needed. However, that will not work, because this medication does not come in a standard dosage and the balance of ingredients needs to be changed to suit individual patients. Even if medical trials did work, they would be of no use to those children who are already benefiting from medicinal cannabis. Trials would be both unethical and unsafe, because those children would have to stop taking the medicine that is working for them, perhaps for a placebo, and risk a return of life-threatening seizures.

[Christine Jardine]

I could not agree more. We must address that quickly. As the hon. Gentleman said, it should not be mixed up with the scenarios he described; it is often children—adults as well—on a carefully prescribed medication that the Government have supported.

There is also the argument of there being no evidence because of the lack of clinical trials. Well, there is an abundance of observed evidence that medicinal cannabis works, so the clinical trials explanation falls short. There are also those who point to the medicine Epidiolex being available on prescription for two rare forms of childhood epilepsy, but I understand that that is less effective for many sufferers. Scientists say that the medicinal cannabis that these children need is effective for 95% of children.

[Alberto Costa]

I thank the hon. Member for giving way for a second time. On that point, one thing I have discovered in the debate is the lack of confidence in the medical profession. In fairness to the Government, they do not have a role at all in enforcing the medical profession’s prescription of medication. Does she agree that the medical profession ought to listen to her and others in the House tonight, put its shoulder to the wheel and encourage its members to listen to the science and help those children across the country who need the medication badly?

[Christine Jardine]

The hon. Member makes exactly the point that I would make. I think we all appreciate that the Government do not have the power to make the medical profession do anything, but they can be encouraged to put their shoulder to the wheel and get behind this cause.

--- Later in debate ---

[Sir Mike Penning]

I alluded earlier to the narrow-mindedness of people who have taken an oath to protect people and protect children. No one, I would have thought, goes into the medical profession to hurt people, but at the end of the day, we have a group of children—not thousands, but a small group—whose parents are crying out, “Please listen to my specialist. Please listen to me, as a parent trying to save my child’s life.”

[Alberto Costa]

I thank my right hon. Friend for the good work that he did as my predecessor on the APPG. Does he agree that, given that there is such a small number of children across the country who suffer from severe forms of epilepsy, a temporary measure would be for the Government to be bold and simply cover the cost of private prescriptions until we develop the proper framework, along with the science that demonstrates conclusively the efficacy of this medicine?

[Sir Mike Penning]

I could not agree with my hon. Friend more strongly. That was what we did in the Home Office, which is why Alfie and some of the other children got their prescriptions paid for by the NHS. We set the committee up and we did it. I say again that I feel personally guilty, because we worked in all good faith to get the issue across to the Department of Health and it still has it, and those parents feel guilty, because they feel that other children should be having the benefits that Alfie is getting.

Surely, given the will of this House, the will of the Government, the will of previous Prime Ministers, the cross-party support, the fact that the previous Health Secretary came and met the parents here in the House and made them a commitment, and the fact that the Home Secretary who changed the legislation is now the Health Secretary, it must be a no-brainer. Let us look after these kids.

--- Later in debate ---

[Jo Churchill]

It is not in my gift to take that option, but I will take that comment back to the Health Secretary and have further discussions. As I said, in our very first meeting he highlighted this as an area where he wanted to see movement, and we are determined to get some movement.

We need the evidence base and we need trials to be ongoing to help inform future commissioning decisions. NHS England has also established a patient registry to collect uniform outcome data from licensed and unlicensed products. The refractory epilepsy specialist clinical advisory service has been established to provide expert impartial advice for clinicians treating complex cases while we await the outcome of clinical trials.

I hope I have managed to convey how committed I am, because I do believe that we ought to be able to find the solution for these children, and I was very aware of the hon. Lady’s point about what happens when they reach adulthood. My right hon. Friend the Member for Hemel Hempstead has spoken to me about the fact that as children move through and medicines gets better they thankfully survive longer, but then we have the added complexity of having to look at the system, which is why we want to make sure we find a solution. Finding the right solution is what we are after, because it will take time to generate further evidence and see the results of clinical trials. I do understand, however, that patients and families continue to access these medicines privately, and that the cost of doing so is very high. There are no easy or quick solutions, but I am committed that the Department will reconsider what action the Government may reasonably take with regard to access to unlicensed cannabis-based products for medicinal use where clinically appropriate.

The health of the children and adults dealing so courageously with these difficult-to-treat conditions is of paramount importance. I think it was Hannah who said to me that for every time Alfie does not end up in hospital having fitted repeatedly, there is a saving to the system.

[Alberto Costa]

Will my hon. Friend give way on that point?

[Jo Churchill]

Yes, finally, but then I am going to conclude.

[Alberto Costa]

My right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) made the point that the Government did supply the medication from a different Department, at no cost to the parents. I have suggested to the Minister that the Government, only on a temporary basis, should cover the cost for the very small number of children across the country who desperately need this medication, which they obtain through private prescription. Can she commit today from the Dispatch Box that she will at least try her best to find the money from her Department to cover those costs on a temporary basis?

[Jo Churchill]

I hope that I outlined earlier that a mixture of solutions is needed to crack this problem. We are not taking anything off the table. We are looking at every option that we can to ensure that we get the right support. Health is devolved, and the access to and funding of medicines is a matter for the relevant devolved nation. I hope, however, that hon. Members have seen that we are all trying to work on the challenge together, because there should not be a difference. As people have said this evening, this is not partisan; it is about making sure that we get the right care to the children.

I will commit that the health of children and adults is of paramount importance. It is of paramount importance to the Secretary of State and to me. I can assure hon. Members that I will carry on making sure, with my team, that we are doing as much as we can to try to get us to a solution that helps these children in the short term but also the long term, while having as the second strand of work the evidence base that we need to support the wider prescribing of any drug, because we need to make sure that we are doing it with care.

Question put and agreed to.