James Daly
Main Page: James Daly (Conservative - Bury North)(3 years ago)
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Jeff Smith
That is an important point. No one is claiming that every product is absolutely safe, and products often have side-effects, as Alfie’s case demonstrated. He had been pumped full of steroids which affected him badly and would eventually have killed him. That was a medication that was recommended until he started taking medical cannabis.
There is lots of evidence from around the world. Cannabis-based medicines have been legal in Canada and some US states for some time, and there are tens of thousands of individual patient reports on the therapeutic value of cannabis-based medicines in the Canadian and, in particular, Minnesotan databases. They do not equate to the so-called gold standard double-blind randomised control trial level of proof, but they are highly suggestive of a pattern of evidence that should be taken seriously. Another issue is that many people would argue that it is not ethical to insist on RCTs for the cohort of children with epilepsy, as they would have to be taken off the medicine that is keeping them well, and keeping them alive in some cases, to put them on a placebo. Some people would question that process.
In 2019 the Health and Social Care Committee looked at the barriers to access for cannabis-based products, and the Government produced a response to its report in which they made reference to the need for observational trials to help the patient cohort of children with severe epilepsy. Even the Government argued that we should be considering other forms of evidence, and I know from my interaction with the MHRA that it is considering other forms of rigorous, well-researched evidence. Unfortunately, the Government’s view seems to have changed. I have spoken to Ministers and officials again, and they seem to be wedded to the idea that RCTs are the only way forward.
My Bill would set up a commission to propose a framework for the assessment of cannabis-based medicines and their suitability for prescription in England, to sit alongside the existing MHRA processes for conventional pharmaceutical drugs. The commission would help rigorously to assess all the existing evidence base and to consolidate all the available evidence, which could give those who are eligible to prescribe more confidence in the evidence for prescribing this particular unlicensed medicine.
I hope that the commission’s work will result in a more suitable framework for the assessment of the efficacy and safety of cannabis-based medicines, which I hope would result in more cannabis-based medicines, including whole-plant medicines, becoming licensed. That would go a long way towards addressing the problem. It would improve the likelihood of prescription on the NHS for both severe and common conditions. The commission would also be tasked with identifying any other barriers that could be overcome to improve access. That might result in the adoption of short-term solutions that I will touch on shortly.
James Daly (Bury North) (Con)
The hon. Gentleman is making an excellent speech on this important issue. From my research it seems that the manufacturers and producers of cannabis-based products are not investing in the clinical trials and evidence that would be necessary, or at least proportionate in comparison with what happens for other medicines. Will he say why that is not the case, or will he point to evidence of such trials being undertaken by the producers of these medicines?
Jeff Smith
The hon. Gentleman makes an important point. Trials are happening, but there are two problems. The first is the cost, because RCTs are extremely expensive. As I mentioned earlier, the problem with RCTs is that they are not really suitable for some of these medicines, such as whole-plant cannabis extract medicines, which is the essential problem. We can isolate compounds and put them through the RCT process, but it is much more difficult with whole-plant cannabis extract medicines. Those are the two difficulties, and I will go on to suggest that the Government could commission trials as a possible way forward.
Mrs Elphicke
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.
James Daly
My hon. Friend is making a powerful speech, and I ask this question with the aim of developing my own knowledge of the subject. According to what the hon. Member for Manchester, Withington (Jeff Smith) said about the two-stage process of being referred for treatment, there is a clinical referral which is then considered by the clinical commissioning group. In Teagan’s case, after the clinical referral did the CCG cause the blockage? If so, were clinicians at a CCG level or non-medically qualified people making that decision?
Dr Allin-Khan
In three years, we have had three prescriptions on the NHS. In three years, we have seen people in fear of not having roofs over their heads because they cannot afford to give life-changing medication to their children.
Dr Allin-Khan
I will make a bit more progress and then I would be absolutely delighted to give way.
The situation that we face, whereby only three prescriptions in three years have been allowed, pushes more and more patients into the hands of private providers, who, as we have heard, are charging extortionate amounts of money each month for treatment. For the vast majority of people, that is simply out of reach.
Let me add something that I was not originally going to say: I, too, am a science geek. I have a biochemistry degree and I worked in medical research before even going to medical school. I understand the importance of robust, evidence-based medicine, but I can also tell hon. Members that people searching in a very desperate way for things that will improve the quality of their life, or even keep their children alive, might also go to places where absolutely no thought is given to the purity of a drug. They may seek alternatives that are increasingly more dangerous for their children. It is important to recognise that.
Dr Allin-Khan
I could not agree more; my hon. Friend puts the point across perfectly. If anyone is planning on talking the Bill out today, please will they ask themselves who benefits from that and whether they would feel proud of frustrating a process for many children and families that would mean that they did not have to go through, frankly, the hell that we have heard described?
James Daly
The hon. Lady is being extremely generous with her time; she will please forgive me for intervening, but I want to call on her expertise. The specific intent of Parliament was to allow medical professionals to prescribe non-licensed cannabis-based products. It cannot be any clearer than that; that is where the law is now. I agree with the point that was made—the fact that there have been only three prescriptions is ridiculous. However, perhaps she can address this question: the medical professionals who are considering such matters can see the evidence that we have talked about—it has been incredibly well articulated by all hon. Members—so why are they not referring those matters on and saying, “This patient needs this treatment”?
The other question that I want to ask—very inarticulately—is about the two-stage process of the clinical referral and then the money within the CCG. Is the problem that it is getting through the first bit—the clinical referral—but the money in the CCG is stopping it? I wonder if she could address those points in her remarks.
Dr Allin-Khan
My understanding and my belief, unless someone has an alternative proposal, is that clinicians are often screaming from the rooftops in the knowledge that their patients need this medicine. We are where we are, however, with only three prescriptions having been granted in three years. This Bill seeks to improve that and move us forward.
Families being forced to pay for treatment from private providers creates an unjust two-tier health system. A founding principle of our health service is that we do not believe that people’s access to treatment and services should be based on their ability to pay—it is as simple as that. The barriers in accessing medicinal cannabis are causing exactly that situation. We would not tolerate that for any other medication, so we should not tolerate it here. The Government must speed up and improve the availability of medical cannabis on the NHS and guarantee that patients across the country can access those products where appropriate.
We have all heard the testimonies of children who receive no respite from their seizures and of patients whose chronic pain has become a constant of their lives. Working in hospitals, I regularly meet those people and their families, who beg me and other doctors to help their loved ones. Witnessing their suffering never gets any less upsetting, especially when we know that there are options to alleviate it. Unrelenting pain can be so devastating for all involved. It is imperative that we listen to those who would benefit from access to cannabis-based products and allow them to guide our future thinking.
We have a voice in this place. I commend hon. Members from both sides of the House for using their voice today to speak up for those families who cannot be here to make the case themselves. Hon. Members have been begging, but we should not have to beg to do the right thing for the people who we serve.
Elliot Colburn
I totally agree. It might be of some use to the House if I read a little more of my constituent’s reflections, as he went on to say:
“Then came along the introduction of Drug Science and their Project Twenty 21, this gave me the ability to seek professional help, to be able to get a prescription to legal Cannabis flower to which I vape as a preventative and when needed as a pain killer. I still get migraines but luckily now I have a medicinal way to cope and quell most of the side effects, literally giving me my life back.
Although this does sound like a fairy tale, with a happy ending, there is a darker side to this.
Currently the expense and experience of being with a private clinic and private dispensary/pharmacy is quite strained, adding anxiety and stress into the situation. We rely on the ability of both the clinic’s and Dispensary’s to keep us in prescription which does not happen and is quite literally floored. Medication is imported into the UK, its very often caught up in customs and the added issues with Covid has broken supply chains.
Dispensary’s are often out of product and the clinics are not kept abreast of this so many re-writes of prescriptions have to happen and thus costing time to get the needed medication and cost for re-writes. This all breaks down to us the patients being without medication, sometimes up to a month, putting us back at square one (prescriptions have to be written monthly).
On top of the supply and demand issues, quality is also something that has been with issue, many reporting to Yellow Card unusable medication due to sub-standard product and often mould that cannot be used – with no way of a refund or quick turnaround of a re-stock.
Without a shadow of a doubt this would never happen under the NHS but as we have no other choice in the matter its either suffering under private clinics or unfortunately breaking the law and turning back to the black market.
There are many thousands like me in this position, I’m but a single drop in a large ocean of people with similar experiences, I would like to draw your attention to this so you may air this as unfortunately the situation is not getting better. I understand that the primary concern is for children with epilepsy though there is a much larger footprint of people benefiting from medical cannabis and this should whole heartedly be pulled into the NHS to better control and support patients.
I would be grateful if you could keep this all”—
he refers to all of us in this place—
“in the back of your mind so you have some real world information from one of your local constituents of the big picture surrounding medical cannabis, it’s time for this to be pushed forward as it was supposed to have been back in 2019…
Luckily medical cannabis has given me my life back, I hope others can benefit in the future but it needs to be under the protective umbrella of the NHS.”
I thank that constituent for sharing what was obviously a harrowing story, and for permitting me to raise it on the Floor of the House this afternoon. I am sure colleagues will agree that that was incredibly brave, so I am very grateful to that person for allowing me to do so.
We have heard many constituents’ stories during the debate, although we have explored just two elements of them—childhood epilepsy and the migraines that my constituent has suffered. I would like quickly to bring in one more, which is the exploratory research being conducted on the use of CBD for fibromyalgia and other treatment-resistant neuropathic pain.
I know the suffering that those conditions can cause, especially when there is so little known or understood about them; I have many family members who have been diagnosed with fibromyalgia or similar conditions. Again, I have seen the benefits that CBD can bring, but I agree with colleagues about the need for robust research. I do not think it is a question of whether we will get there, but a question of how. I hope that the Minister has been able to take on board the experience—
James Daly
Does my hon. Friend agree that the law is very clear that medical professionals can prescribe non-licensed cannabis products, but the question is why clinical commissioning groups are not funding that? That is what we have to address, to force them to fund it.
Elliot Colburn
I totally agree with my hon. Friend. I have experience of working in what we might call a super CCG, which is now an integrated care system, looking at commissioning at a strategic level across six London boroughs, which is by no means a small footprint—we commissioned services for more than 1 million people when I was there, including for four of London’s biggest hospitals. I agree with the shadow Minister, the hon. Member for Tooting (Dr Allin-Khan), that practitioners were screaming from the rooftops that they wanted to be able to give such prescriptions and, indeed, felt confident about that. I will not say that they all were—a lot of the colleagues I used to work with in the NHS were not—but a significant amount were confident. From a commissioning perspective, when we were sat in our offices in Wimbledon, talking about commissioning services and looking at the health of the six south-west London boroughs we were tasked with dealing with, there was a clear sense of nervousness and even confusion among commissioners. That obviously needs to change and there needs to be some way to support commissioners to make the positive decisions to deliver the funding. I hope that when the Minister responds we will hear a little bit about what the Government can do about that.
In bringing my remarks to a close, I emphasise that the constituent experiences we have heard about in this debate, including from the constituent who was kind enough to allow me to read out their story, have been profound. That should be in the back of all our minds when we discuss this issue, because there are real-life implications that we do not always see when we pore over the details of text. I look forward to hearing from the Minister what we can do to unlock some of the issues we have explored in this debate.
Sally-Ann Hart
I thank the hon. Gentleman for his comments. I retract the statement that “we all know”, but there is a risk that some people may use medicinal cannabis as an excuse for growing cannabis for recreational use.
James Daly
My hon. Friend is making a very good speech. I fully accept the points that other hon. Members are making, but when the law was changed in 2018, it was not changed with a proviso that there had to be a certain amount of medical evidence to support the use of non-licensed cannabis treatments. It gave specialist practitioners the right to suggest that those products should be used. The problem a lot of the time, as my hon. Friend the Member for Carshalton and Wallington (Elliot Colburn) said, is that the clinical commissioning group—the people with the money—will not financially support such a recommendation. There are two sides to this, but a lot of practitioners do want to make sure that these medications come in and are used to support treatments at the earliest opportunity.
Sally-Ann Hart
I am sure the Minister has heard my hon. Friend’s comments and will take them on board.
Dr Mullan
I entirely agree. For example, if this legislation were seeking to reform or amend the general approach that we take to the appraisal of healthcare technology treatments in the NHS, I might have more sympathy with it, but it is not seeking to do that. Its promoter has picked out a particular line of medical treatment and sought to use primary legislation to drive it forward, and for the reasons I gave earlier relating to the history of deciding what treatments doctors should or should not be using, that is something about which I am extremely uncomfortable, although I am very sympathetic to the individual cases that Members have been raising.
James Daly
In November 2019, NICE conducted a review of the international evidence available in respect of this important issue. The report that followed was essentially inconclusive, but it did consult widely and obtained a wide range of information on some of the issues that Members have rightly identified. If the commissioning proposal in the Bill went ahead, how would the relationship with NICE and its statutory responsibilities work in this situation?
Dr Mullan
As my hon. Friend says, this is creating complexities and competing relationships that need to be given considerably more thought, rather than our aiming to promote a particular treatment.
We have talked about the risks. I now want to describe some of the many ways in which healthcare practitioners are held to account for their decisions. This is particularly important in relation to the unlicensed use of a medicine. First there is the sense of personal, moral or social responsibility that we would hope anyone involved in healthcare feels. Even if we do not necessarily take the Hippocratic oath any more, we are signed up on the basis of the fundamental principle, “First, do no harm”. Understanding that can be complicated, as I have tried to explain in relation to side-effects, for example.
Secondly, we are accountable to our employer. For example, a person working in a hospital is not free to practise as they wish. Their employer will have reasonable expectations that they ensure that their practice is safe, evidence based and works in the best interests of their patients. Increasingly, employers will place a big emphasis on following best practice guidelines from royal colleges, the National Institute for Health and Care Excellence and others that restrict their practice in some regard.