Oral Answers to Questions

Christine Jardine Excerpts
Tuesday 5th March 2024

(3 weeks, 2 days ago)

Commons Chamber
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Helen Whately Portrait Helen Whately
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I would be very happy to meet my right hon. Friends to discuss those concerns.

Christine Jardine Portrait Christine Jardine (Edinburgh West) (LD)
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I thank the Secretary of State for her offer to help cut waiting lists in Scotland. I listened to the frankly delusional statements from the SNP Benches about the state of the NHS in Scotland. We are in dire straits and suffer the same problems, particularly about GPs and appointments disappearing. When are we going to see an improvement in appointment availability?

Andrea Leadsom Portrait Dame Andrea Leadsom
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The hon. Lady will no doubt be extremely envious of the fact that in England there are 50 million more GP appointments now every year, which is a fantastic achievement by this Government. She will want to look at what is happening in Scotland, which has some of the worst health outcomes in western Europe, and challenge SNP Ministers over drug and alcohol death rates and falls in life expectancy.

NHS Dentistry: Recovery and Reform

Christine Jardine Excerpts
Wednesday 7th February 2024

(1 month, 2 weeks ago)

Commons Chamber
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Victoria Atkins Portrait Victoria Atkins
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I thank my right hon. Friend for all the work she did on dentistry in the Department. I am conscious that many people have contributed to this plan; I am grateful to her and others. Again, I hear the observations on the General Dental Council, and will ensure that the GDC hears them as well. That is a fair challenge to the NHS. Colleagues will see that the plan is co-signed by NHS England, which shares our ambition to deliver those 2.5 million more appointments and set up the future of NHS dentistry for our country.

Christine Jardine Portrait Christine Jardine (Edinburgh West) (LD)
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Today’s statement by the Health Secretary will have been listened to with great interest by my constituents in Edinburgh West, who share a lot of the same concerns, face the same difficulty getting NHS dental treatment and will be looking for the same sort of solution as constituents in England. Could the Secretary of State clarify for me, and for all those who come to me, whether there will be Barnett consequentials? If there are, will she impress upon the Scottish Government the need to ringfence the money and actually invest it in dental services? If not, would she be willing to share with the Scottish Government how she is approaching the problem in the hope that they might actually respond and do something?

Victoria Atkins Portrait Victoria Atkins
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I hear the frustration in the hon. Lady’s question. This is a devolved area—as it is in Wales—and is therefore a matter for the Scottish National party. I assume the hon. Lady will continue her usual advocacy on behalf of her constituents to ensure that the SNP looks at what is happening in England and tries to do better for Scotland.

Type 2 Diabetes: Availability of Drugs

Christine Jardine Excerpts
Tuesday 30th January 2024

(1 month, 4 weeks ago)

Westminster Hall
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Westminster Hall is an alternative Chamber for MPs to hold debates, named after the adjoining Westminster Hall.

Each debate is chaired by an MP from the Panel of Chairs, rather than the Speaker or Deputy Speaker. A Government Minister will give the final speech, and no votes may be called on the debate topic.

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Christine Jardine Portrait Christine Jardine (Edinburgh West) (LD)
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I beg to move,

That this House has considered the availability of drugs to treat type 2 diabetes.

It is a pleasure to serve under your chairmanship, Mr Pritchard.

I am grateful for the opportunity to speak about what is a vital and, I think, under-recognised issue. I wish I did not have to, and that all the necessary medicines were available for all of the serious, life-changing conditions we face, but the reality at the moment is that they are not. Specifically, I would like to talk about type 2 diabetes, which is more common than type 1 and can go undiagnosed for years.

To be clear about what we are talking about, if someone’s body does not make enough insulin or what it makes does not work properly, the result is high blood sugar levels—type 2 diabetes. If untreated, that increases the risks of serious problems with their eyes, feet, heart and nervous system. High blood sugar levels can cause serious complications, potentially at great cost to individuals, but also to the national health service. The reality is that any of us can develop type 2 diabetes, but it mostly affects people over 25, and often those who have a family history of it.

What about treatment and medication? We know there is currently no cure, but we also know that type 2 diabetes can be put into remission by losing weight. We all know that eating well and exercising are the key to a healthy lifestyle, and that is never truer than with preventing and reversing the onset of type 2 diabetes.

Jim Shannon Portrait Jim Shannon (Strangford) (DUP)
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I commend the hon. Lady for bringing the debate forward. I am a type 2 diabetic—I declare an interest as such—and when I was diagnosed some 13 or 14 years ago, I went on a weight loss course right away. The doctor told me, “You lose weight!” I lost about 4 stone, and I have kept it off, but that did not stop the diabetes in its entirety. I still have it, and I still have to be very careful about what I eat.

The point I want to make is that there are recent indications that certain diabetes treatments can also be successful for weight loss, but weight loss is really important at least for the first stage of diabetes, and priority for such treatments must be given to those with type 2 diabetes before, with respect, those who are finding success with them for weight loss. How can the Minister and our Government encourage such guidelines to be firmly set in place?

Christine Jardine Portrait Christine Jardine
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I thank the hon. Member for that intervention, because that point is at the heart of the matter. We have to ensure that the supply of drugs, which is short at the moment, is prioritised for those who need them for important health reasons.

A healthy weight, as the hon. Member said, and keeping active make it easier for someone’s body to manage their blood sugar levels and help prevent insulin resistance, which can lead to type 2 diabetes. Research has shown that, for some people, a combination of lifestyle changes can reduce the risk of type 2 diabetes by about 50%, but sufferers may also need to take diabetes medication such as metformin and insulin, as well as making changes to their lifestyle.

In the UK, 4.6 million people have type 2 diabetes and around 13.6 million are at risk of developing it. People often need help, such as intervention and medicines. Last year, I called on the UK Government to take action on the shortage of medicines for type 2 diabetes patients, after a constituent came to me concerned that her treatment and her health would be impacted by a shortage of the diabetes drugs she needed. They are known as GLP-1 RAs—glucagon-like peptide-1 receptor agonists—and include one of the most common drugs, semaglutide.

As for many other manufactured drugs, there is currently a supply problem with semaglutide. In this case, the problem has been made worse, as the hon. Member for Strangford (Jim Shannon) said, by the fact that the same drugs are effective for weight loss. The very thing that semaglutide does to help diabetes patients is making it difficult for them to access it.

I wrote to the Scottish Government, who told me they did not expect the supply to return to normal until mid-way through this year. I appreciate that that is not the most helpful response, but in some ways it is understandable, because medicine supply and licensing is a reserved matter. That is why I am raising it with the UK Government. We have seen issues with drug shortages beyond diabetes, and that is why I am so concerned at the slow response to the lack of medication.

Patients find themselves stuck between the proverbial rock and a hard place. In Scotland, they have the Scottish Government unable to act, and they perceive the UK Government to be very slow to act. It seems that neither Government have realised how potentially serious this situation could be for patients who use these drugs daily. For a patient to be in a position where they do not know whether they can get what they need to help them get well and keep them healthy is simply not acceptable. I have heard from people in my constituency and beyond about the impact that the situation is having on their lives.

Ian Lavery Portrait Ian Lavery (Wansbeck) (Lab)
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Does the hon. Lady recognise that this is not just about access to drugs for type 2 diabetics, but about access to medical equipment, such as the LibreView glucose monitoring sensors that have changed people’s lives? Does she agree that, because the incidence of type 2 diabetes is closely related to areas of social deprivation, where the finance is not available, the NHS should look to give those sensors to as many people living with type 2 diabetes as possible? That would save a fortune in the future, and it would reduce harm to lots of people who are currently suffering greatly because of diabetes.

Christine Jardine Portrait Christine Jardine
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The hon. Gentleman makes an excellent point, and I completely agree.

Type 2 diabetes is a problem in itself, with the lack of medication, but it is also an illustration of a major problem that our health services are facing with growing costs. We should be looking at how we prevent the problem in the first place, both in areas of social deprivation and in society generally. We should be looking at how we help people to avoid the problems that come with conditions such as type 2 diabetes. If we fail in that, people will fall into the situation where they are living with diabetes—a condition that requires 24/7 self-management to stay healthy. I invite Members to imagine living with a condition that they have to manage every day—a condition that has the power to affect them at any moment, disrupting what they are doing and altering their day to day life—when they have done all they can to stop that happening. Now consider how the lack of a medication that we have organisations and administrations responsible for providing makes that situation worse.

A couple of years ago, as part of a campaign by Diabetes UK, I tried to live life as if I had diabetes, and I have to say that I failed dismally. I realised just how difficult it is, and I realised that people living with diabetes —type 1 or type 2—deserve much better than they are getting at the moment. To be turned away at the GP surgery or pharmacy through no fault of the practitioner and to be told, “You might have to wait 18 months for what has been helping you get on top of the condition”, is simply unacceptable.

I know some people who have been left waiting since 2023. Shortages have been linked to those without diabetes using the drugs, as the hon. Member for Strangford mentioned, simply for weight-loss purposes. Drugs such as Ozempic are being sold online for nearly £200—a 1,765% increase on the cost of what they would be on an NHS prescription.

The Association of Independent Multiple Pharmacies has talked of the shortage of medication to treat the likes of epilepsy and attention deficit hyperactivity disorder as well as diabetes, all of them potentially life-changing and life-ending conditions. That is true also of some cancer drugs and hormone replacement therapy. The consequences do not lie just at the door of patients but, as we have heard, at that of the NHS and community pharmacy teams, which are under increased strain.

A national patient safety alert has been issued by NHS England and the Department of Health and Social Care to address supply, but I ask those with the power to consider standing in the shoes of those going through this. People who should have been started on GLP-1s are facing delay or are being put on to less effective options. Let us imagine being told that we had to take less effective medicine for a life-changing condition. If the supply is interrupted, a person potentially has to go through the side effects again and again when being restarted. People have been contacting Diabetes UK regularly since the start of the shortage in early 2023. This is not just about equality or ease of access. For all those affected, it is about quality of life.

Oral Answers

Christine Jardine Excerpts
Tuesday 25th April 2023

(11 months, 1 week ago)

Commons Chamber
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Rachael Maskell Portrait Rachael Maskell (York Central) (Lab/Co-op)
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10. What recent assessment he has made of the adequacy of the availability of NHS dental services.

Christine Jardine Portrait Christine Jardine (Edinburgh West) (LD)
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22. What progress his Department has made on improving access to NHS dentist appointments.

Neil O'Brien Portrait The Parliamentary Under-Secretary of State for Health and Social Care (Neil O’Brien)
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There are 6% more dentists doing NHS work than in 2010, and activity levels are going up. In March the number of patients seen over the past year was up by nearly a fifth on the year before. The initials reforms we have made to make NHS work more attractive are having positive effects but there is much more to do and we will be publishing a plan to improve access to dentistry.

Neil O'Brien Portrait Neil O’Brien
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We will look at all those things. We have introduced additional flexibilities, as the hon. Lady knows, and we are allowing dentists to do more to deliver 110% of their UDAs and bringing in minimum UDA values, but we are also interested in prevention and I would be happy to look particularly at what we can do for younger people.

Christine Jardine Portrait Christine Jardine
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Tooth care, like any other form of healthcare, should be universally accessible, but we know that we are facing a crisis across the UK, with one in five adults who could not get an appointment in the past 12 months carrying out dental work on themselves, or getting someone else to do it, which is quite horrifying. The problem is not confined to one part of the UK. In Scotland, 80% of dentists are no longer accepting new adult or child patients. We have a crisis across the UK, so will the Minister commit to introducing a national programme and to speaking to the Scottish and Welsh Governments to address the shortage of NHS dentists for all of us?

Neil O'Brien Portrait Neil O’Brien
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I am happy to work with the Scottish and Welsh Governments. We are, as I said, driving up levels of delivery, and we will be publishing a plan to take that further.

Government PPE Contracts

Christine Jardine Excerpts
Tuesday 6th December 2022

(1 year, 3 months ago)

Commons Chamber
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Christine Jardine Portrait Christine Jardine (Edinburgh West) (LD)
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I rise to support this motion, but the sentiment that I feel most strongly is, “What a mess—what an unnecessary, unmitigated mess.” We have heard a lot from Conservative Members about how difficult it was at the time. We all know that, as we all experienced it. We have heard a lot about having to be quick and decisive and the pressure that people were working under, with lives at stake. I wonder whether the Minister appreciates that that is exactly why people are so angry about this. We all went through it and experienced it.

The thing that we remarked on most at the time was the spirit in the country and how everybody got behind the Government, even those of us whose job it is to scrutinise them. We got behind the Government, and people had faith in, believed in and supported them, but three years down the line, we wake up every morning to yet another news story, another scandal and more suggestions about what might have gone wrong. People feel let down and betrayed.

The numbers are frightening. At one point, it was £2 billion of taxpayers’ money that was wasted on PPE contracts, but we are now told that almost £10 billion was wasted on PPE in total. We hear about PPE being stored and burned. That is not really the issue for the people in my constituency and elsewhere in the country who are struggling this winter to make ends meet, who have massive energy bills, who wonder whether they will be able to feed their children, who are worried about what their mortgages will cost. What is bothering them is that when they were putting their faith in the Government, when they believed the Government that we were in all in this together, maybe we were not. The suggestion now is that some people were profiting from other people’s pain. That is why, in supporting this motion, I make a plea to the Government to listen to what we are saying. We are not saying that civil servants were wrong. We are saying that people need to know what actually went on. They need transparency.

When the latest Prime Minister first took office he promised us a Government who would be ethical and would have doing the right thing at their heart. We need him to be as good as his word now. We need him to make it clear that he will leave no stone unturned and that his Government will leave no possibility of anything sleazy, of any cronyism or of anyone having profited at a cost to and at the expense of the British public at a time of extreme—and it was extreme—national crisis.

That is why this debate is important, and we need that from the Government now. We need something of the spirit that we had back then when things looked so dark and we were all worried for ourselves, our families, our health and our futures. We need the Government to stick by what the Prime Minister said and to give us transparency. Let us see the papers; put everything out in the open. And please ban VIP lanes, because the very notion that there was such a thing as a VIP lane when the country was in the midst of a pandemic and people were dying is offensive.

Covid-19: PPE Procurement

Christine Jardine Excerpts
Thursday 24th November 2022

(1 year, 4 months ago)

Commons Chamber
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Urgent Questions are proposed each morning by backbench MPs, and up to two may be selected each day by the Speaker. Chosen Urgent Questions are announced 30 minutes before Parliament sits each day.

Each Urgent Question requires a Government Minister to give a response on the debate topic.

This information is provided by Parallel Parliament and does not comprise part of the offical record

Lindsay Hoyle Portrait Mr Speaker
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On her birthday, I call Christine Jardine.

Christine Jardine Portrait Christine Jardine (Edinburgh West) (LD)
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The Minister has made much of the context of the time and the speed and the calls for PPE, but what my and, I am sure, everybody else’s constituents wanted was PPE quickly and appropriately. Earlier this year the High Court ruled that the Government’s VIP lanes were not only inappropriate, but unlawful, and in breach of the obligation of equal treatment. Does the Minister appreciate that constituents across the country are calling for an explanation? Will he back the Liberal Democrat amendment to ban VIP lanes for all future Government contracts?

Neil O'Brien Portrait Neil O'Brien
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I have set out the challenge. We had a situation where MPs and Ministers were all being contacted by constituents who were desperate to help and who either had contacts with suppliers or were suppliers themselves of PPE. They could see on the TV every night the desperate need for PPE, and they were keen to help in that huge national effort. I have talked about the scale of the operation to supply and source that PPE in the extraordinary circumstances we were in. A way had to be found to manage all those contacts we were getting. All of us were getting in touch to try and offer help, so a way had to be found to manage all these things, and that is what I have described this morning. All these things, to reiterate, went through the same rigorous process as every other contract.

Oral Answers to Questions

Christine Jardine Excerpts
Tuesday 1st March 2022

(2 years ago)

Commons Chamber
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Gillian Keegan Portrait Gillian Keegan
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I would be happy to meet my hon. Friend. I have also met some of the campaigners and researchers in this area, and the head of our research arm, so that we are clear. The support we are providing to the community includes a new £4 million MND partnership. That will bring the research community together so that they can pool resources and expertise to leverage that funding further, and ensure that they put forward strategic applications.

Christine Jardine Portrait Christine Jardine (Edinburgh West) (LD)
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11. If his Department will make an assessment of the long-term impacts of use of (a) benzodiazepines and (b) other opioids on children being treated for acute forms of epilepsy.

Gillian Keegan Portrait The Minister for Care and Mental Health (Gillian Keegan)
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Benzodiazepines are an important medicine in the treatment of severe cases of certain types of epileptic conditions in children. The Medicines and Healthcare products Regulatory Agency continues to monitor the safety of treatment with benzodiazepines. Opioids are not authorised to treat children for acute forms of epilepsy.

Christine Jardine Portrait Christine Jardine
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Benzodiazepines are not appropriate for all children, and the Secretary of State has been instrumental in approving medicinal cannabis for use by children with epilepsy. I recently visited a medicinal cannabis farm in the borders of Scotland, which is poised to make an important contribution to the pharmaceutical industry in this country. Given the economic benefits, and the moral imperative of helping those children who can only benefit from medicinal cannabis, will the Minister say what steps the Government will take to make it available on NHS prescriptions?

Dignity in Dying

Christine Jardine Excerpts
Wednesday 8th December 2021

(2 years, 3 months ago)

Commons Chamber
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Andrew Mitchell Portrait Mr Mitchell
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My hon. Friend makes a very good point, and I will come directly to that.

My aim in this debate is not to persuade all colleagues of the rightness of this cause but to make two clear points: first, that this is a debate about the real-life consequences of our blanket ban on assisted dying; and secondly, that there are real examples from overseas of how it can be done better.

In the past several days, we have seen the rules on international travel tighten once again; in the space of a week, the Swiss Government closed their borders to travellers from the UK unless they undertook a quarantine of 10 days, before changing the rules back a few days later. The dismay that that has caused people seeking an assisted death in Switzerland is overwhelming, with their having to spend their final days confined to a hotel room, scrambling to update plans when time and energy are in such short supply, and unable to have all—or perhaps any—of their loved ones there to accompany them. The already cruel situation where British citizens can have the death they want only if they travel to another country becomes yet more unacceptable when even that most exceptional option can be withdrawn with such short notice. That is not to blame Switzerland; it is the fault of our own failure as a country to provide that option at home, preferring to outsource our compassion to another country.

Last year, I raised the question of travel during the pandemic with the Secretary of State for Health and Social Care. He confirmed that the ban on travelling overseas did not apply to those travelling for an assisted death in another country. That announcement was a welcome relief to many, although it once again highlights our heavy reliance on other jurisdictions to provide our own citizens with the deaths that they want.

Andrew Mitchell Portrait Mr Mitchell
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I will get a little further with my case, and then I will certainly give way.

Furthermore, this leniency does nothing for those who cannot afford a trip to Switzerland; who cannot access the necessary medical records; who cannot travel due to illness or disability; or who cannot access the services of Dignitas for a host of other reasons. It forces all those who accompany the dying person to break the law and run the risk of prosecution on their return to this country.

I am saddened to tell the House that David Peace has today died at Dignitas; it is a coincidence that he happened to die today. Many colleagues may have seen a touching interview with David over the summer, in which he spoke about his desire to control his death, rather than let motor neurone disease choose his death for him. Earlier this week, before he left this country—his home—for Switzerland, David said:

“I have terminal motor neurone disease, a fatal illness for which there is no treatment or cure. It has robbed me of my ability to speak, swallow, balance and walk. It is rampaging through my body, paralysing my muscles. Nothing will stop it. Palliative care cannot give me the death I want, I simply want the right to die on my own terms...My only option has been to plan an assisted death at Dignitas in Switzerland, which I have done in meticulous detail over the past few months. Though stressful and hugely expensive, this has given me comfort and peace of mind. Covid-19 measures have been a real concern throughout this year, knowing that travel restrictions or lockdowns could jeopardise my plans”.

He continued:

“The emotional and logistical nightmare I have endured over the past few days would have been avoided entirely under the Assisted Dying Bill, which would have enabled me to go peacefully and with dignity in my own home at a time of my choosing.”

David’s call is echoed by another proud Englishmen, Ray Illingworth, the legendary English and Yorkshire cricketer, who was diagnosed with oesophageal cancer a year ago. He said this of having to go abroad to obtain an assisted death:

“If that was the only option I would, but we shouldn’t have to do that. I’d like to be put to sleep in peace in my own home in Yorkshire.”

Ray has represented his country, and is now asking his country to help him have the choice of dying on his own terms.

Those who cannot travel to Switzerland have only a few agonising choices here at home. For many, our world-leading palliative and end-of-life care will ensure a peaceful and dignified death, but even with the very best care, 17 people a day will die in excruciating pain, to say nothing of those who die with uncontrollable symptoms, or without dignity in their final days. For those who wish to hasten their death, the option remains open of withdrawing from life-sustaining treatment, or voluntarily stopping eating and drinking with the intention of hastening death; but there is no option to take direct steps to end one’s own life with medical support.

Perhaps most tragic are the cases in which dying people, trapped in pain and despair, decide to end their life by suicide. The best estimates are that hundreds of suicides every year are of people living with a terminal illness. I know from speaking to people who have direct experience of losing their loved one to suicide that these dreadful decisions are taken not lightly, but as a last, desperate choice, due to the lack of a safeguarded assisted dying option.

We must be honest about recognising the victims of our laws—the dozens of our citizens who feel they must travel overseas to achieve the death that is right for them; the hundreds of terminally ill people who die by their own hand; and the thousands of people who die beyond the reach of the very best end-of-life care we can offer. Every year, we condemn too many people to becoming casualties of a law that lacks compassion and public support, and belongs to a bygone age.

--- Later in debate ---
Christine Jardine Portrait Christine Jardine
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The right hon. Gentleman is making a very powerful speech on a highly emotive issue. He mentioned Liam McArthur’s Bill in the Scottish Parliament, which was the subject of consultation, and there is movement in Scotland. The right hon. Gentleman spoke of the reticence of some Members or their reluctance still to make their minds up. Does he share my hope that they will take confidence from what is happening in the Scottish Parliament and the support among the public to have the courage of their convictions, if and when legislation comes before this place?

Andrew Mitchell Portrait Mr Mitchell
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I thank the hon. Lady very much for her intervention. It must be the case, and I am sure my hon. Friend the Member for Devizes (Danny Kruger) will agree, that all Members of Parliament will be following what happens in Scotland with the greatest possible care. It is an issue that, wherever we stand on the debate, greatly exercises Members of the House of Commons.

I wish to draw colleagues’ attention to the process envisaged by the Scottish Parliament for a debate on this issue. A proposal has been lodged in the Parliament and the initial consultation will close in two weeks’ time. In the new year there will be an analysis of the responses to the consultation, which will feed into the drafting of the Bill. Once drafted, the Bill will be examined in detail by Select Committees, calling for evidence from stakeholders across society. Only once that pre-legislative scrutiny has been completed will the legislation be debated on the floor of their Parliament.

Here in this House we lack anything like such a comprehensive system. Our system for considering private Members’ legislation is entirely inadequate when debating such an important issue. The Government have rightly determined that it should be neutral on the principle of assisted dying, but I invite my hon. Friend the Minister to recognise that neutrality on the legislative process, rather than on the principle, has the effect of siding with the status quo. A refusal to facilitate the debate is a de facto opposition to law change.

Finally, I will ask the Minister some questions about specifics of how the laws in neighbouring jurisdictions would work together. As she will no doubt be aware, the General Medical Council, the Nursing and Midwifery Council and other healthcare regulators operate on a UK-wide basis. Can she confirm that if either Jersey or Scotland were to legalise assisted dying, any health and care professional who participated in and followed the requirements of that law would not face prosecution?

The Minister may also be aware that the issue of conscientious objection has previously been treated as a reserved matter by the Scottish Parliament. It should be common ground that, whatever our view on assisted dying, health and care professionals should not have to actively participate in the practice if they believe it contravenes their conscience and beliefs. I understand that the Government’s position is that conscientious objection is in fact already within the competence of the Scottish Parliament: can she confirm to the House that that is the case, and to what extent any legislation on conscientious objection in the Scottish Parliament would contravene the devolution settlement or require the approval of the UK Government?

Finally, I ask the Minister to update the House on the work commissioned by the former Secretary of State, my right hon. Friend the Member for West Suffolk (Matt Hancock), to be undertaken by the Office of National Statistics on the number of terminally ill people who end their own lives by suicide. All of us in this House wish to tackle and reduce the number of suicides, attempted suicides and incidents of self-harm, but in order to do that, it is imperative to understand why many people take that most desperate decision.

Medical Cannabis: Alleviation of Health Conditions

Christine Jardine Excerpts
Thursday 4th November 2021

(2 years, 4 months ago)

Commons Chamber
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Christine Jardine Portrait Christine Jardine (Edinburgh West) (LD)
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It is a pleasure to follow the hon. Member for Manchester, Withington (Jeff Smith). I thank the hon. Member for Inverclyde (Ronnie Cowan) for securing this debate on medicinal cannabis.

I am sure I am not alone in this place in often being asked by people, “What is it that makes you want to be an MP?, “What is it about being an MP that is rewarding?”, or, particularly after days like yesterday, “Is it not frustrating?” When I am asked that, I point them to what happened a couple of years ago, when my constituent Karen Gray came to my office with her wee boy Murray, who, up until that point, had been the subject of lots of conversation and lots of letters back and forward to the Scottish Health Minister and to the then Health Secretary about the availability of cannabis oil. She brought him into the office and he sat and explained to me all about why he liked dinosaurs. That might seem unremarkable. But before then—before he had cannabis oil—Murray was likely to have up to 100 seizures in a day. He had spent much of his life in hospital and missed much of his education, and his parents were worried for his future.

Three years ago, when the then Home Secretary, now Health Secretary, made cannabis oil legal, it gave Murray’s family hope that their lives would change, and their lives have changed, Murray’s life most significantly. But it still is not fixed, because now the specialist who was prescribing cannabis oil for Murray has retired. When they did, earlier this year, they wrote to the Secretary of State asking what was to happen, because there would now be only one clinician in the country prescribing cannabis oil for hundreds of children for whom Epidiolex is not appropriate but for whom cannabis oil does change their lives and keep them safe. I have spoken to Murray’s mum about this. She is of the opinion—and says that the specialist was as well—that many GPs and doctors in this country want to be able to help their patients with cannabis oil, and that will be possible only if the Department of Health changes its policy and encourages the profession to do so.

This is the third debate on this subject that I have taken part in in the past couple of months. Each of them was secured by an MP from a different party. Today’s debate was secured by the hon. Member for Inverclyde, who is a Scottish National party Member. Yesterday’s debate in Westminster Hall was secured by a Conservative Member. I secured the other debate, as a Liberal Democrat Member, and we had support from Labour Members. I am at a loss as to how an issue that is so emotive, and has so much support across this House and across this country, has to keep coming back. We have to keep asking the same questions. We have to keep saying that clinical trials will not work because cannabis oil is not suitable for clinical trials. Even the NHS has said so. In its report of 8 August 2019, it recommended that there should be alternative trials. By that I assume it means observational trials.

I wonder what motivated the Government and the then Home Secretary to change the law: I suspect that he wanted to do it in the best interests of a child, and children, who were suffering and could be helped by that change in the law. I also wonder how frustrated he, and other politicians who took part in that decision, including all of us who worked hard and campaigned for it, must now be that despite that significant—in some terms, massive—change by this Government, we have not made the intended progress. People are still in pain in this country. Families are spending, as we have heard, upwards of £1,000, sometimes £3,000, a month to secure legal medication for their children that they cannot get on the national health service—the national health service of which we are so proud and that is supposed to deliver free-at-point-of-delivery care from cradle to grave.

Crispin Blunt Portrait Crispin Blunt
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A few of us have constituents with a child with epilepsy and have invested the time to get a detailed understanding of many of the issues. The problem, as alluded to by my right hon. Friend the Member for New Forest East (Dr Lewis), is that most of our colleagues think we have done it. After the decision was taken in November 2018—or when the licence was given for Billy Caldwell to get his medicine—the conclusion was that one would not be able to find anyone who was objecting, because if one can have medicine from the Asian poppy, why on earth can one not have medicine from cannabis? There was probably no opposition in this place at all. But the tragedy is that the evidence is that we have not done it. We must get back into the complexity. We will support the new Minister in fighting her corner to ensure that people can get these medicines, along with all the other interests that are engaged here too.

Christine Jardine Portrait Christine Jardine
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I thank the hon. Member for his intervention. He is absolutely right; I could not agree more. We all thought it was done, but more importantly, and more upsettingly, so did the families of the hundreds of children, and adults, who would benefit—adults with conditions such as multiple sclerosis for whom it would be life-changing. They all thought it had been done and cannot understand why it is not. I have to be honest: I cannot understand why it is not either, and why it simply cannot be done. Will the Government please consider using observational trials instead of insisting on clinical trials, which are not appropriate?

Daniel Kawczynski Portrait Daniel Kawczynski (Shrewsbury and Atcham) (Con)
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The hon. Lady and I have locked horns on a number of occasions on the radio over the European Union, but I would like her to know that she has support on the Tory Benches, particularly when she talks about children and the conditions they are facing. I hope she will take comfort from the fact that she has support from all political parties in the House in trying to change the legislation on this very important issue.

Christine Jardine Portrait Christine Jardine
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I thank the hon. Member for his comments, and I do take comfort from that, but more importantly, the many hundreds of families watching to see what we do will take comfort from the fact that they have support on the Government Benches as well as the Opposition Benches. I ask the Government and the Minister to take that on board. Will they consider the suggestions that have been made today, as well as using discretionary funding to support those prescriptions that families are currently paying for until we can resolve this issue? Then we can finally achieve what the then Home Secretary and the Government wanted to achieve three years ago when they made cannabis for medical use legal. They did not intend that we would be here now with only three prescriptions issued.

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Maria Caulfield Portrait Maria Caulfield
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I take the hon. Gentleman’s point, but many children are not accessing this medication, and this is a route to that. As I explained in yesterday’s debate, clinical randomised control trials with a placebo arm have extremely strict rules, and if one arm of the study is showing incredible progress and doing better than the other arms, the study must be stopped, patients unblinded, and everyone switched to the arm that is doing the best. In some circumstances, that has enabled people to access drugs under clinical research in a much quicker way. It does have some advantages.

Christine Jardine Portrait Christine Jardine
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That is all very well, but it brings us back to the fact that there are children who are already benefiting from the drugs. Even the NHS has asked whether it would not be beneficial to have an alternative trial, such as an observational one, and to use that evidence, rather than having a clinical trial with all these pitfalls.

Maria Caulfield Portrait Maria Caulfield
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I take the hon. Lady’s point, but the MHRA, which is the regulator, and other regulators around the world have a tier of research that they will accept. The randomised controlled trial method is the gold standard, and the more randomised controlled data someone has, the more likely they are to get a trial approved quickly. Of course observational studies will be used. That is why, if researchers have a large group, want to do observational studies—we heard about the Sapphire clinic from the hon. Member for Inverclyde—and come forward with observational data, I encourage them to speak to the MHRA to see whether that is the sort of research that would be acceptable. It is important that they have those discussions with the regulating body, because it may well accept some of that evidence.

Until manufacturers, researchers, academics and those using these drugs in practice come forward with whatever research they feel would be acceptable and have those discussions, we will go round in a circle. I am keen that if observational studies are acceptable, we support them to happen. Whatever it takes, in research terms, to get a licence through, the Government are there, providing funding, advice and support. However, ultimately, they are not the body that can make that decision; but I think there is a willingness around the House to try to find a resolution.

It will take time to generate further evidence and see the results of clinical trials. The Health Secretary and I are committed to doing everything in our power to accelerate this work. There have been some helpful suggestions this afternoon that we may need to go away and look at.

I thank everyone again. Although this is the second debate on this subject in two days, I know that it will not be the last; the private Member’s Bill will come forward next month. I want to put on the record my commitment to this issue. It is extremely difficult. In yesterday’s debate, we heard constituents’ stories relayed by their MPs, including the hon. Member for Middlesbrough (Andy McDonald). They really are very moving testaments, and we want to find a way forward. 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.

Medical Cannabis under Prescription: Children with Epilepsy

Christine Jardine Excerpts
Wednesday 3rd November 2021

(2 years, 4 months ago)

Westminster Hall
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Alberto Costa Portrait Alberto Costa (South Leicestershire) (Con)
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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 Portrait Christine Jardine (Edinburgh West) (LD)
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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 Portrait Alberto Costa
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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.

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Christine Jardine Portrait Christine Jardine (Edinburgh West) (LD)
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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 Portrait Adam Afriyie (Windsor) (Con)
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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 Portrait Christine Jardine
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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.

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Maria Caulfield Portrait Maria Caulfield
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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 Portrait Christine Jardine
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Will the Minister give way?

Maria Caulfield Portrait Maria Caulfield
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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.”