I am extremely moved and saddened by the comments of the hon. Member for Middlesbrough (Andy McDonald). My great sympathies and good wishes to him and his family.
This is such an important topic to be discussing today, and I thank the hon. Member for Manchester, Withington (Jeff Smith) for introducing his private Member’s Bill. The issue affects many people up and down the country, adults and children alike. I welcome the opportunity to speak in this debate and will focus my remarks on epilepsy in children.
My constituent, Teagan Appleby, who was mentioned earlier, is one of those who cannot access medical cannabis on the NHS. Teagan is reliant on medical cannabis to manage her epilepsy so that she does not suffer hundreds of fitting episodes. I pay tribute to Teagan’s mother Emma for her superb care of Teagan. It is simply unfair and unacceptable that, in addition to looking after Teagan, Emma has to raise thousands of pounds each month to get hold of Teagan’s medicine. That should not be the case—that is what our NHS is there for. The law was changed by my right hon. Friend the Secretary of State for Health and Social Care when he was Home Secretary, but too many people simply cannot get an NHS prescription in practice even after that change.
Teagan’s case was one of the first constituency surgery cases I worked on after being elected in December 2019. As is the case for many hon. Members representing children who have epilepsy and need medicinal cannabis, the issue has gone on for many years—too many years. Many hon. Members have worked hard to secure access to the medicine, and I pay tribute to them for all the work that has been undertaken. I attended the debate on this topic here just over a month ago, on Thursday 4 November, which followed the Westminster Hall debate on 3 November, to which the hon. Member for Middlesbrough referred, where the narrower topic of the situation for epileptic children was explored.
Pursuing the situation for Teagan, I had fully expected that it would be a case of, “Where there’s a will there’s a way”. I am sorry to say that has not been my experience of the NHS in this case. Instead it seems to be, “Where there’s no will, no one will pay”. I do not mean political will. As has been set out time and again in this place, the political intent is clear and I truly believe it is cross-party.
I was present when the Minister for primary health, my hon. Friend the Member for Lewes (Maria Caulfield), said last month:
“The Health Secretary and I are committed to doing everything in our power to accelerate this work.”
I have spoken to her personally about the sad situation that affects Teagan and I have absolutely no doubt about her resolve or that of the Government resolve on this. She said further:
“We have changed the law, but that has clearly not been enough. We need to find a resolution, so that we can get these medications licensed if the clinical evidence is there, and we need to work with the regulator.”—[Official Report, 4 November 2021; Vol. 702, c. 1120-21.]
I agree with her: the law has changed, but that is not enough. It is not enough to ensure that Teagan gets the medicine she needs on the NHS.
In my own experience of pursuing the matter as a constituency MP, I have seen the blocks and barriers to helping Teagan at first hand, as I am sure many others have in many other cases within the NHS. These blocks and barriers are harder to overcome because of the specialty of dealing with those children and with specialised medicines in a shared care environment. This is one aspect that clause 1 seeks to address.
Medical cannabis can be prescribed on the NHS, and changes were made in November 2018 to legalise that position. Although that class of drugs is unlicensed, it is not unlawful. Plenty of unlicensed medicines and treatments can be prescribed on the NHS. Indeed, I once read that exercise might be available for prescription on the NHS, but I am not sure whether that is the case. I have been able to confirm that the National Institute for Health and Care Excellence has approved the funding of the Alexander technique for Parkinson’s disease, as well as ginger and acupressure for reducing morning sickness.
This particular drug, cannabis, is illegal, and I support that position and fully oppose a relaxation on or general legalisation of cannabis. The same is true of morphine, which is sold illegally as heroin. I support that position and fully oppose the general legalisation of heroin, but I have needed morphine in hospital and have been utterly and profoundly grateful for the relief it gives—other Members may have had the same experience. I am mindful of that, which is why it is vital that we find a way to support Teagan and those like her who need access to the medicine that works for them.
That support is twofold: money and prescribing. I am afraid it cannot wait for the outcome of years of medical trials or the vague hope that some company will want to invest in developing further research in this area, because this is an issue that affects, in numbers, relatively few children, but its impact on their quality of life and their condition is utterly profound.
Of course, medicines need to meet the highest standards, and there must not be a question of opening Pandora’s box and legalising cannabis through the back door—I know some hon. Members are concerned about that aspect of the debate. That will need to be explored further in Committee to ensure that the Bill is entirely robust.
For me, the question is how I can help Teagan and other children like her to get the support they need paid for by the NHS. Subsection (2) of proposed new section 34CA of the Medical Act 1983 sets out that a register may be kept of prescribing GPs. At the present time, there must be concern that the terms and conditions of what is described in the subsection as the “criteria” and “training” elements may not resolve the problem faced by Teagan, and a number of Members have referred to the hesitancy within the medical profession on some of these issues and have recognised the immense specialty of these issues.
Let us suppose that Teagan’s GP is willing to prescribe. The money to pay for prescriptions currently needs to come from the area’s clinical commissioning group or the main NHS funding for exceptional medicines. I have tried both sources for Teagan without success. I ended up in a perpetual loop: essentially this is not an approved medicine, so it will not be funded, even though it is a legal medicine that can be prescribed. Some specialist consultants do not accept that the medicine works, even though it clearly does work for those families who have children taking it. Teagan’s mum knows it works, which is why, month after month and year after year, she tirelessly gets the money through fundraising to help her daughter get the medicine she needs. If Teagan does not get the medicine she needs, she gets more ill; if she gets the medicine she needs, she is better. Sometimes the particular type of medicine she needs has to change in order for it to remain effective. Then it is changed, and she is better again. That seems to me to be unquestionable and reliable evidence. Indeed, it can be found in Teagan’s own medical records, including those that are kept when she is hospitalised, which she is on occasion.
I am mindful of what was said by my hon. Friend the Member for Crewe and Nantwich (Dr Mullan), but I would suggest that that is documentary and professional evidence, given that it is in Teagan’s medical records. Prescriptions are being given for this medicine. I therefore do not accept that the evidence is simply observational, as was suggested by my hon. Friend the Member for South Ribble (Katherine Fletcher). I realise that she was referring to it in a scientific context, but, as she said herself, we are having a debate that people can understand and connect with. These are not “observations” by Teagan or her family; they are clinical notes in her formal medical records, and I think that some of the evidential base that is needed can be found in those few but very well-observed and well-documented cases in which children are using this particular medicine.
I think we need to understand that this is not just about whether a treatment works for a particular patient. There are plenty of treatments that work, but with more study and better understanding we come to recognise that there are many side-effects, and that problems that might crop up among a small number of patients could turn out to be devastating. We must be careful about what we mean when we say that a treatment is effective. We have all just experienced the process of approving a vaccine which we know works, but which we also know has severe side-effects. We must look at a bigger picture than what happens in the case of any one individual patient.
My hon. Friend clearly has considerable practical experience in medicine, and, as I have said, the subject of medical cannabis and the treatment of children is very much a specialist area. However, it would be perverse indeed for people to be ordered to have a medicine that they do not want—my hon. Friend has raised the question of research and the covid vaccines—while others are prevented from getting medicines that they do want when they know that they work.