Medical Cannabis under Prescription: Children with Epilepsy

Christine Jardine Excerpts

Wednesday 3rd November 2021 Westminster Hall

[Alberto Costa (South Leicestershire) (Con)]

I beg to move,

That this House has considered medical cannabis under prescription for children with epilepsy.

It is a pleasure to serve under your chairmanship, Ms Bardell, and I am very grateful to open this debate on an issue that affects many of our constituents. I do not propose to speak for long, because I can see that quite a large number of colleagues are in the Chamber and would like to speak as well. If they have not already done so, I invite them to inform the Chair that they wish to speak.

I wish to mention my constituents Maya, who is nine years old, and Evelina, who is just four. Maya and Evelina suffer from rare forms of epilepsy and rely on medical cannabis to improve their quality of life. Their families are currently having to pay up to £2,000 a month for private prescriptions of medical cannabis, as they are unable to access that medicine on the NHS. Their families are also having to go to unbelievable lengths to raise money, something that has been made more difficult during the pandemic as there has been less opportunity to fundraise. Maya’s family have set up a Facebook page called “Mercy for Maya”, where her mum Samantha runs monthly fundraisers and raffles to help with the enormous monthly costs. My constituents should not have to do this for something that is legal on the NHS.

[Christine Jardine (Edinburgh West) (LD)]

The picture that the hon. Member paints is one that I and many other hon. Members are familiar with, because we also have constituents going through the same ridiculous hoops to get a legally available medicine. Is he aware of any other medication in this country for which that has ever been the case—it has been legal and available, but people have had to raise the money for it themselves in this way?

[Alberto Costa]

I am not sure, but I doubt that our constituents would have to put their hands in their pockets to the tune of £2,000 a month to pay for any other medication that was extremely important for their severely ill children. My constituents, and indeed all Members’ constituents who have children in this situation, should not have to pay for this medication themselves.

Medical cannabis has had lots of benefits for Maya, including preventing her from having prolonged seizures, which has meant less time in hospital. Medical cannabis has also improved her alertness and engagement. She used to spend a lot of time asleep during the day, but she is now able to attend school, which she very much enjoys.

Both I and colleagues have lobbied the Government tirelessly to widen access to this life-changing and life-saving treatment. I am sure that I speak for many Members here today in expressing delight that medical cannabis was made legal in specialist cases in November 2018. This week marks three years since that law change.

I welcome the new Minister to her place and the good progress that the Government have made on widening access to medical cannabis. I am also grateful to her for agreeing to meet me, as co-chair of the all-party parliamentary group for access to medical cannabis under prescription, along with my colleague the hon. Member for Gower (Tonia Antoniazzi), later this month. I look forward to discussing the issues in greater detail with her.

You may be interested to learn, Ms Bardell, that since the very welcome law change three years ago, which should have improved the lives of children who suffer with rare and intractable forms of epilepsy, only three prescriptions have been issued on the NHS—only three prescriptions. At this point, I would like to clarify that we are talking about whole-plant extract. This type of medical cannabis, containing CBD and THC—cannabidiol and tetrahydrocannabinol—together with many other active ingredients, has been life transforming for a small cohort of families and their children. It is vital that that point is understood, as there have been several hundred prescriptions for a fully licensed paediatric drug known as Epidiolex, but that is primarily CBD-only. There is an acknowledgement that that drug has a role to play, but it was not the subject of the appeals that were so eloquently and passionately made by the families concerned when they visited Parliament at the start of this week.

Access to medical cannabis was legalised after high-profile campaigning by me and other Members across the House, who are here today, and the hard work of the group End Our Pain. It and other campaigners, along with some of my colleagues, worked with the then six-year-old Alfie Dingley, who also suffers from rare, intractable epilepsy, to help him secure access to medical cannabis. In 2018, after intensive campaigning, Alfie was granted the first ever long-term licence for the type of medical cannabis that is life transforming. Medical cannabis subsequently became legalised in specialist cases on 1 November 2018. Since Alfie secured the prescription, his transformation has been significant. He has gone from suffering up to 150 life-threatening seizures a day to recently celebrating being 500 days seizure free. The change in health and quality of life for Alfie is nothing short of transformative, and that transformation has been evident in many others, too.

I am very grateful to the Secretary of State for Health and Social Care, who in 2018 was the Home Secretary who granted the licence for medical cannabis to Alfie Dingley. I know that my right hon. Friend cares deeply about this issue. Now that he is Secretary of State for Health, I urge him to consider the recommendations that I am mentioning today on what further action could be taken to help children like my constituents to access medical cannabis on the NHS. The law change has been a change in legislation, but not in practice. That has been reflected in the number of NHS prescriptions that have been issued. My constituents and many others were greatly reassured by the steps that this Government took to legalise these treatments in 2018, but they are understandably dismayed that actions have not followed words in this case.

There are a few reasons for this blockage on NHS prescriptions. At the same time that the law changed, a number of bodies issued guidance on how and when medical cannabis should be prescribed. Those bodies included the British Paediatric Neurology Association, the General Medical Council, the National Institute for Health and Care Excellence and the Royal College of Physicians, but let us be clear: nothing—absolutely nothing—in any of the guidance states that it is wrong or not allowed to prescribe this medicine, either privately or on the NHS.

However, I am advised by the families and advocates on this issue that the guidance paints a somewhat confusing picture. In my capacity as co-chair of the APPG, I have attended a number of meetings with senior NHS leaders. In those meetings, they tell me that if an NHS consultant wishes to prescribe medical cannabis, they are able to do so. The British Paediatric Neurology Association does not currently support the use of whole-plant medicinal cannabis, which includes the THC ingredient, and has published guidance stating that only neurologists should be allowed to prescribe cannabinoids containing CBD. That guidance has been criticised for being overly restrictive.

The high level of caution in the guidance issued is likely to have played its part in preventing the prescribing of those products and making NHS trusts unwilling to provide funding. Currently, there are only three paediatricians in Britain who prescribe the whole-plant oil to children with drug-resistant epilepsy, and one of them is to retire imminently, meaning that families are at risk of losing their prescriptions.

A few months ago we had a breakthrough, as NICE issued clarification of its guidance relating to the use of medical cannabis for drug-resistant paediatric epilepsy. It has now made it clear that clinicians can prescribe medicinal cannabis in appropriate cases. However, even since the clarification of the guidance, the hesitancy among the medical profession remains.

I am aware that this issue continues to receive a high degree of media, public and political attention, and I am concerned that some of those involved—perhaps some of the medical professional bodies such as the BPNA—may be experiencing a temptation to entrench and dig in. If that is the case, I make a plea to them and their medical professional colleagues to reject that temptation and instead to reach out to work with the Department of Health and Social Care, the Minister and her colleagues, the families and interested politicians to find a way forward to help these vulnerable families and their children.

I also strongly encourage the Government to ensure better education for paediatric neurologists on whole-plant extract medical cannabis and its benefits for children with drug-resistant epilepsy. I am aware that the previous Secretary of State for Health and Social Care tasked the NHS with undertaking a review of the blockage on NHS prescriptions. The review reported in August 2019 and made two main recommendations: first, that an expert panel be set up to advise on the prescription of medical cannabis in cases of paediatric epilepsy; and secondly, that a trial should be set up to inform the evidence base on safety and efficacy, and to act as a way of getting these families access to the medicine for free.

The families and campaigners have told me that those recommendations offered them great hope and a way forward. However, things have not worked out as the families hoped. Yes, the expert panel was set up; it is called RESCAS—the refractory epilepsy specialist clinical advisory service—and its members are indeed experts in paediatric epilepsy, but as far as the families can see they are not experts in the way that whole-plant extract has worked both here in the UK and overseas.

Imagine, then, the enormous disappointment when one of the very first cases considered was turned down for medical cannabis. The young boy in question is experiencing a life transformation similar in positive impact to that which Alfie is experiencing. The panel is not working. I know the Minister cares deeply about this matter. I hope she will agree that the make-up and terms of the panel are in need of urgent review so that it includes expertise not just in the condition itself, but in the medicine too.

The other main recommendation of the August 2019 review was the establishment of trials. I understand that the Government’s position is that there needs to be more research in the area before prescriptions can be available more freely. The proposed trial was to be observational, which meant the children could continue on the medicine and their condition be evaluated by medical professionals. It soon became clear last year that plans for the observational trial had been dropped and replaced with a randomised control trial. RCTs are not appropriate in this case, as I am sure hon. Members agree, as they require some of the cohort to be taken off the medicine and given a placebo.

That is simply not possible, and we have to ask ourselves why anyone would take their children off a medicine that was already working for them and improving their quality of life. RCTs can also be incredibly costly and take years to complete. That is time that my constituents and others do not have. I therefore suggest that the Government consider conducting an observational trial or an alternative study as a means of enabling the children to have continued access to medical cannabis at no cost. That would be possible for the Secretary of State, and the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Lewes (Maria Caulfield), here today, to commission under the National Health Service Act 2006.

--- Later in debate ---

[Christine Jardine (Edinburgh West) (LD)]

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 (Windsor) (Con)]

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]

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.

--- Later in debate ---

[Maria Caulfield]

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]

Will the Minister give way?

[Maria Caulfield]

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.”

Endometriosis and Polycystic Ovary Syndrome

Christine Jardine Excerpts

Monday 1st November 2021 Westminster Hall

[Taiwo Owatemi]

I thank the hon. Member for raising such an important point, which I will come to later. I know from speaking to many healthcare professionals that some are passionate about endometriosis and PCOS but would like more funding and support, so that their colleagues and all within the medical profession get the necessary medical education in their curriculum.

Endometriosis and PCOS are about so much more than having difficulty conceiving, but funding decisions made by Whitehall treat them as though they are not. That is why it is so upsetting, but unsurprising, that the Government response to the petition discussed funding for fertility treatments. In fact, when most young women start to see symptoms at puberty, pregnancy is the furthest thing from their mind.

With that in mind, I will talk about a constituent of mine, a 14-year-old girl who was ostracised and relentlessly bullied by her peers for her excessive facial hair and acne and for weight-related reasons. She experienced such debilitating pain in her lungs and lower abdomen that she was hospitalised during a GCSE exam. After five years of calling hospitals, three painful exploratory surgeries, countless GP appointments and several specialist referrals, she was finally diagnosed with endometriosis and PCOS. The only treatment her GP could offer her was generic birth control pills, which no evidence-based studies confirm as definitive treatment for either disease.

[Christine Jardine (Edinburgh West) (LD)]

The hon. Lady makes an excellent point. I have experience of young women being given contraceptive pills to deal with what the GP regards as period pain, only to then suffer mental health impacts because of the contraceptive pill. They then find themselves in the difficult position of having to choose between what the GP thinks is a treatment for period pain and the impact of the contraceptive pill on their mental health. Does she agree that that is simply unacceptable?

[Taiwo Owatemi]

I thank the hon. Member for raising that important point. I agree that it is simply unacceptable.

Before my constituent left, the GP told her to come back when she wanted to get pregnant, leaving her to figure out how to cope on her own in the meantime. Her story of feeling shamed by her peers and gaslit when trying to get a diagnosis is not unique, as many Members have raised. On average, it takes eight years to diagnose a woman with endometriosis, and years to diagnose PCOS, which brings me to my next point.

The Government need to increase funding to study both conditions. We still do not know what causes endometriosis, effective ways of preventing it from spreading to other organs or effective non-surgical ways of managing symptoms. Some 58% of women with endometriosis had to visit a GP more than 10 times to get a diagnosis, while 21% had 10 or more hospital appointments and 53% went to A&E, with 27% going more than three times, before diagnosis. That is deeply distressing for the patient and a terrible use of NHS resources.

Medicinal Cannabis

Christine Jardine Excerpts

Monday 6th September 2021 Commons Chamber

[Christine Jardine (Edinburgh West) (LD)]

It is in some ways a pleasure to speak in this debate, but in others it is a huge disappointment that we are still debating this issue years after we thought it was in fact settled. I go back in this issue to my first face-to-face meeting with my constituent, Karen Gray. It was in London, curiously—not Edinburgh—in the pouring rain. We were meeting to hand in a petition to Downing Street calling for the legalisation of medicinal cannabis. I had been in touch with Karen and her son, Murray, before that day and was aware that Murray had a rare form of epilepsy that was blighting his childhood, with multiple seizures, hospital admissions and missed school days; his parents feared for his life.

Since then, my team in the constituency have experienced all the ups and downs of the journey with Murray and Karen—the hope, the frustration and the disappointment, but always, always optimism that the medication that he needs will be there and available on the NHS. We thought the job was done in November 2018 when, after a powerful public campaign in which the right hon. Member for Hemel Hempstead (Sir Mike Penning) played a pivotal role as a Health Minister, the then Home Secretary, now Health Secretary, the right hon. Member for Bromsgrove (Sajid Javid) made medicinal cannabis oil—the substance on which so many were pinning their hopes—legal.

[Sir Mike Penning (Hemel Hempstead) (Con)]

With your permission, Mr Deputy Speaker, I will elaborate later in a speech, but the crucial thing about when the law was changed was that it was about the prescribed medical use of cannabis oil by a specialist consultant, not a GP. It was not about a spliff behind the bike sheds or anything like that; it was prescribed medical use that saved children’s lives. I agree with the hon. Lady that it is a disgrace we are still here today, debating it.

[Christine Jardine]

I thank the right hon. Gentleman for his intervention, and I share his frustration and annoyance. The measure was specifically designed in the way that it was, and it had the support of the Government at the time. The Home Secretary, the Prime Minister and the whole Department for Health team were behind this move, which we thought would change so many children’s lives. Sadly, the job was not completely done, because Murray is still unable to access that life-changing treatment on the NHS. His family have to find the money themselves every month. It is not just Murray; it is not just about his case and his life; it is not a one-off. I stand here tonight for him, and also for all those who know exactly what that feels like.

[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.

[Adam Afriyie (Windsor) (Con)]

I thank the hon. Lady for making such a powerful presentation with great passion. Does she share my frustration—I am sure she does—that the debate around medicinal cannabis is often confused with people who just want to smoke dope and drop out? It frustrates me enormously, because people such as Murray, Karen and Jorja are all suffering from life-threatening, debilitating illnesses and we are talking about precise, prescribed medical treatments. Unless we can quickly sort out the authorisation of medical practitioners to continue to prescribe to these existing children and patients, we will be in a very dark place.

[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.

[Sir Mike Penning]

I thank the hon. Lady for being generous. Fortunately, we have time to debate this massively important subject this evening, which is what it deserves. The point made by my hon. Friend the Member for South Leicestershire (Alberto Costa), who co-chairs the all-party parliamentary group that I used to chair, is that specialist medics out there are writing the prescriptions, but they are being blocked and regularly threatened by other senior people in the medical profession. They are told, “Even though you are the expert and that would save a child’s life, if you do this, we will stop you.” It is right that it is not a politician’s job. The will of the House is very important, as I will come to in my speech, but if the top-expert clinicians are writing prescriptions, some of which are honoured by the NHS—I will also come to that—and they are being blocked by other medics, somebody has to step in and sort the mess out.

[Christine Jardine]

The right hon. Gentleman makes an excellent point. We do have that overwhelming body of observed evidence of the efficacy of cannabis oil. I have seen at first hand the difference that medicinal cannabis has made to Murray Gray’s life—it has transformed his life. When his mum, Karen, first came to see me, he was a very unwell wee boy who was, as I mentioned, constantly in and out of hospital with dozens of seizures a day, and his family were worried that they could lose him. Since being prescribed cannabis oil, he is seizure-free and a happy youngster who plays football with his dad. When he came to visit me in my office, he explained everything I have ever need to know about dinosaurs. It was a joy to see him so happy. The medication has given him a life that he may not otherwise have had.

It is time for the Health Secretary—just as he did when he was Home Secretary—and his team to intervene to make the case that the medical profession should put its shoulder to the wheel. It is time to close the huge gulf between what the Government promised—and, I believe, wanted—and what has been delivered.

[Tonia Antoniazzi (Gower) (Lab)]

The Secretary of State for Health and Social Care is the best-placed person to move the debate forward, because he was the one in government in the Home Office who changed the law. Does the hon. Member agree that we need action now?

[Christine Jardine]

I agree 100% with the hon. Lady that we need action now—it is actually overdue—and that the Secretary of State for Health and Social Care is the very person who can give us what we need.

Because this is not a political football kicked between party politicians—it never has been and never should be; we have always resisted that—a little over a year ago, more than 100 MPs across the House from the Liberal Democrats, Conservatives, and Labour and Green parties wrote to the former Health Secretary to demand action.

[Sir Mike Penning]

And the DUP.

[Christine Jardine]

And the Democratic Unionist party; I do beg your pardon.

Nor is the debate any longer about the proper use or otherwise of cannabis oil. As I have said, the evidence that it is life-changing for those in need is already overwhelming. So it appears that the debate comes down to the willingness of the medical profession. The clock is ticking, however. There are currently only two physicians in this country prescribing the medication, and one of them retires shortly. Add to that the fact that for many families, the Grays included, there will come a time when they cannot afford the medicine their loved ones need and will no longer be able to raise the money. We cannot wait for the creaking bureaucracy of the medical profession to turn.

As we have said, when the current Health Secretary was at the Home Office, he responded to the parents’ appeals, listened and made medicinal cannabis legal. Now the ball has once again found its way into his court and he can help, so my appeal is straightforward. I know a little of it personally: I have had a seizure— I have come to and seen the fear and the relief in the eyes of loved ones—and it is terrifying. What it must be like for a child I do not know. Until a more widespread solution for prescribing can be agreed, and it must be, the Government should save these families the pain of paying for prescriptions. Surely, when the quality of life for a child—so many children—is on the line, it is the right thing to do. I have always been optimistic, and I have confidence that I am right to have optimism and belief that this Health Secretary will take this opportunity.

[Several hon. Members rose—]

--- Later in debate ---

[Tonia Antoniazzi]

rose—

[Christine Jardine]

rose—

[Dr Cameron]

rose—

--- Later in debate ---

[Jo Churchill]

Hannah has said those exact words to me. That is why I say that we have to look at this in a selection of doable, achievable pieces, because it is not possible to look at it for every condition. We are talking about those children with refractory epilepsy, and trying to find solutions there is my main focus currently.

[Christine Jardine]

I am not a medical person; I am a parent. I think back to the start of covid-19 when we were told that it would take years to do the clinical trials and to do everything that was necessary to have a safe vaccine, but now we have it, and a successful roll-out, because there was the will to do it—to think out of the box. I think for many people the frustration comes from the question of why the medical profession are not being encouraged to look at an alternative way of finding the reassurance that will enable them to be looking at the observational evidence from abroad and taking it on board. They will be looking to the Government to encourage them to do that.

[Jo Churchill]

I would like to reassure the hon. Lady that we do look elsewhere, but it fundamentally comes back to the fact that observational trials on very small cohorts are not the best way to develop the policy, going forward, to treat these individuals. That is notwithstanding the fact that the observations of all the parents I have met, and others who have seen their children benefit, are the foundation for making us try to put our shoulders to the wheel in order to do better. I think there is that tension.

Looking across other countries, my hon. Friend the Member for Windsor (Adam Afriyie) said, “If they can do it, why can’t we?” What is needed to support routine prescribing is the evidence base of safety and efficacy, public funding and cost-effectiveness. This is the system that we use in the UK for all medicines and medical devices, and it is really difficult to see a case for why cannabis should be treated differently from that on a broader spectrum, particularly when we take into account the comment by my hon. Friend the Member for Reigate (Crispin Blunt) that there is a need to look at how these medicines may help others suffering from chronic pain. I have been told that multiple sclerosis and palliative care are other areas, and so on. If we are going to broaden this, then we must look to do the job properly.

--- Later in debate ---

[Jo Churchill]

I do not believe we are stuck, but we should proceed with caution. I think that is a totally acceptable way to go on. I think it was the hon. Member for Edinburgh West who asked why it is any different from insulin or the other drugs she listed. It is different, so we must proceed with caution.

[Christine Jardine]

On that point, will the Minister give way?

[Jo Churchill]

One minute. The cost of parents accessing private treatments remains the responsibility of patients. I am aware that the cost remains high and has brought immeasurable hardship to some families. However, the Government cannot stipulate what companies charge for these products. Furthermore, these are controlled drugs that are specially manufactured or imported for the treatment of an individual patient with an unmet clinical need. In such cases, there are also international treaties with which we have to abide, which mean that companies exporting or importing controlled drugs incur fees to support the necessary governance processes.

We have done an enormous amount within the constraints of the treaties to reduce the costs, making clear what the rules are about and how much can be imported under each notification, and allowing licensed importers to have a small additional supply so that children can get hold of a supply. The supply can be drawn from when a prescription is given by a specialist doctor, reducing the amount of time that a patient might wait for their medicine and helping to ensure continuity. However, the export of finished Bedrocan oils from the Netherlands is currently restricted under Dutch law, so the latter change does not apply to those products. The licensed cannabis-based products Sativex, nabilone and Epidiolex, for which there is clear evidence of safety clinical trials and cost-effectiveness, are provided routinely on the NHS for their licensed indications. Indeed, last month, the licensed indication for Epidiolex was expanded to those with tuberous sclerosis complex. I have heard from parents who have tried some of these drugs and found them not to be successful for their children, but it is important that as we build a better reference for cannabis-derived medicines, we have a suite of products that we can draw on.

[Christine Jardine]

I thank the Minister for giving way; she is being incredibly generous with her time. I would like to say, however, that when I referred to insulin and inhalers, I was not comparing medicine with medicine; I was talking about the principle of having to pay for something that makes such a fundamental difference to people’s lives, and how families are having to pay when, as other hon. Members have said, NHS prescriptions have been issued.

[Jo Churchill]

I apologise for the confusion; I misheard.

Health and Care Bill

Christine Jardine Excerpts

2nd reading
Wednesday 14th July 2021 Commons Chamber

[Steve Brine (Winchester) (Con)]

Health Bills, rightly, do not come around too often, so when they do there needs to be good reason. My conclusion, from the necessary establishment of integrated care systems to the so-called triple aim, the removal of the competition aspect and the new power of direction, is that there is good reason for legislation at this time. This is obviously a vast Bill, but because Health Bills do not come around very often, it is understandable that colleagues and officials will use the opportunity to give legislative cover to things that they have been working on for a long time. The Healthcare Safety Investigation Branch is a very welcome example of that.

I want to focus on workforce and then on primary care, and in doing so I refer the House to my entries in the Register of Members’ Financial Interests. On workforce, I remember publishing the cancer strategy in 2018. The issue then was not our ambition but having the cancer workforce to meet it. Obviously, the chances of surviving cancer have improved significantly in recent years. There are many reasons for that, but detecting 75% of cancers at stage 1 or early stage, which must happen, needs the radiographers in post and demands an endoscopy workforce that can properly execute the FIT screening for the bowel cancer programme, as one example.

[Christine Jardine (Edinburgh West) (LD)]

The hon. Gentleman is making an excellent point about the necessary workforce in the NHS. Does he agree that if we were perhaps to offer indefinite leave to remain to the many thousands of frontline NHS workers in all departments who are here on visas and have worked hard through this pandemic, we would help to fill the gap that so desperately needs closing?

[Steve Brine]

The hon. Lady makes a sensible point. There is obviously a process in place whereby that can happen, but if she is asking whether I agree with a liberal immigration policy to help our health service, then absolutely, yes I do. Addressing the cancer workforce and the wider NHS staffing picture is not an omission from the Bill—we cannot legislate staff shortages out of existence—but if we do not address that issue and face up to our long-term structural gaps, many of the reforms around tackling the backlog and building back better will not amount to a row of beans.

Motor Neurone Disease (Research)

Christine Jardine Excerpts

Monday 12th July 2021 Westminster Hall

[Christine Jardine (Edinburgh West) (LD)]

It is a pleasure to serve under your chairmanship, Ms Cummins. Like others, I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) for presenting the debate today and for the meticulous, detailed and caring way he laid out the statistics and what motor neurone disease means to so many people in this country.

The statistics are frightening. One in 300 of us, as we have heard, can be struck by motor neurone disease in our lifetimes, but because it claims lives so rapidly we are never as a society fully aware of its impact, of the number of lives disrupted, families torn apart, and the suffering in our own communities. I am sure many of us, as has already been mentioned, have experienced the trauma of watching someone we know and love fighting this debilitating, progressive and ultimately always, at this point in time, fatal effects of motor neurone disease.

Like others, I want to pay tribute to all of those who have done so much to raise this petition and bring this debilitating condition to public attention. Almost 400 people in my constituency of Edinburgh West signed it, and I know that many more of them are aware and determined that we should make a difference—many because my constituency is also the home of Scottish rugby, of Murrayfield, the site of many of Doddie Weir’s on-field achievements. For my generation, seeing him on a rugby field or hearing his name in a commentary was reassurance that Scottish rugby was in safe hands. I say “on-field” because the work he is doing to raise awareness and his campaign for research is also a magnificent achievement.

However, it should not be left to those battling the condition to come up with a solution. We have already heard that just £5 million a year is targeted at motor neurone disease research. That is “targeted”. We know that there is general neurological research, but we need to know more about this specific condition itself. That is why it is so important that we have this £50 million investment over five years to establish a virtual motor neurone disease translational research institute and to consolidate the UK’s position as a global leader in neurological disease research. We have also heard that research into motor neurons could open the door on other conditions, and there are practical and financial implications for society and the NHS of being able to relieve people of this burden.

The Motor Neurone Disease Association, MND Scotland and the My Name’5 Doddie Foundation, who have jointly submitted a bid to Government for this year’s spending review, are undertaking a task—a crusade almost—for so many people in this country who are struck by this cruellest of conditions. I say to the Government that £50 million over five years is not a lot in monetary terms, but it could be so much in terms of progress against this disease.

Oral Answers to Questions

Christine Jardine Excerpts

Tuesday 8th June 2021 Commons Chamber

[Karl Turner (Kingston upon Hull East) (Lab)]

If he will publish a timetable for adult social care reforms.

[Christine Jardine (Edinburgh West) (LD)]

If he will hold discussions with relevant cross-party stakeholders on social care reforms.

[Kim Johnson (Liverpool, Riverside) (Lab)]

If he will publish a timetable for adult social care reforms.

--- Later in debate ---

[Helen Whately]

I agree with the hon. Member that there are many challenges for social care, and that is one reason why many Governments have talked about social care reform. As he will understand, over the last year, we have rightly focused on supporting social care through the pandemic, but we are working on our proposals for reform and will bring them forward later this year.

[Christine Jardine [V]]

Almost two years ago, the Government promised to fix social care once and for all, but we have seen in this pandemic that it is still seriously broken. Care does not stop at the hospital exit or the GP’s door. Carers have sacrificed physical and mental health caring for loved ones during the pandemic; 72% have had no break, and 44% say they are at breaking point. In national Carers Week, will the Minister commit to cross-party talks in the immediate term to fix the social care crisis throughout the UK?

[Helen Whately]

As the hon. Member says, this week is Carers Week, which is a really good opportunity to raise awareness about the important role that carers play in supporting loved ones and to remember something that I personally am committed to: we must support carers not only in the care that they do but to live their own lives, for which respite care is really important. As part of our reforms to social care, we are listening to carers and want to ensure that their needs are met.

Dementia Action Week

Christine Jardine Excerpts

Thursday 27th May 2021 Commons Chamber

[Christine Jardine (Edinburgh West) (LD) [V]]

It is an honour to follow the hon. Member for Redcar (Jacob Young). It is, I suppose, inevitable that with as emotive a subject as dementia, this debate would be emotionally charged. Those of us with familial experience, or who have felt helpless as we watched friends cope with the heartbreak of watching their loved ones decline, know how much a dementia diagnosis demands of not just those affected but those closest to them. In my own family, we saw my father-in-law, Alastair MacDonald—a bright, intelligent, articulate journalist who had covered five world cups and Aberdeen’s victory in the UEFA cup in Gothenburg, written books with various footballers and one legendary Manchester United manager, and was once described as one of the best sportswriters of his generation—gradually struggle with everyday life. Vascular dementia, which he had, is characterised by problems with reasoning, planning, judgment, memory and other processes, caused by impaired blood flow to the brain. Like all forms of dementia, it is cruel, relentless and irreversible.

In my health board area, Lothian, there are currently more than 7,000 people living with a dementia diagnosis. Throughout this current crisis, their plight has been accentuated, often by separation from their loved ones or because, in the case of someone I love dearly, although they are fortunate enough to be with their family, lockdowns and the current restrictions mean that their life lacks the stimulation they need to tackle the onset of the condition. His family have discovered that one of the most frustrating things is the lack of clarity in finding support. My cousin told me that you just kind of get signposted and have to manage and get on with it. Sadly, there are nearly a million people with dementia across the UK whose families are currently experiencing much the same, as they strive to get the vital support that they do not just need but deserve.

Underfunding and neglect over decades have left us with a care system in every part of the UK that is overstretched and inadequate to the challenge that families face daily. I know that all of us in the House recognise that and the need to continue to address it. We must work to change and improve a system that means that, as that wonderful organisation the Alzheimer’s Society has put it, a dementia diagnosis

“claims more than one life”

as families face its destructive effects.

Last week was Dementia Action Week. We know that we will probably not find the cure, but we must use the increased awareness to support organisations that are striving to mitigate the effects, improve care, increase research and find better treatments. We must find a cure for the system across the UK, to enable families to have the support and care and provide the love that their loved ones deserve.

Maternal Mental Health

Christine Jardine Excerpts

Wednesday 10th March 2021 Westminster Hall

[Christine Jardine (Edinburgh West) (LD) [V]]

It is a pleasure to serve under your chairmanship, Sir Edward. I thank my hon. Friend the Member for Richmond Park (Sarah Olney) for securing this important debate.

It was during a recent Zoom call with friends that the real, current issues affecting maternal mental health struck home for me. [Inaudible.] All of us on the call with her that evening were both upset for her and inspired by her attitude. As an expectant mother, I had my family round me—mother, sisters, husband, friends—antenatal classes and the knowledge that there would be ample post-natal care and support; but in covid-19 that is simply not possible. The impact is the exacerbation of a problem that already, in the best of circumstances, will affect one in five women who give birth. Those women—it could be any of us—will experience anything from anxiety to obsessive compulsive disorder or post-traumatic stress disorder. I am sure that each one of us in the debate has personal experience of a close friend or relative who has experienced those problems after giving birth—perhaps we have even experienced them ourselves.

We have come a long way as a society from the time when post-natal depression was described almost dismissively as the baby blues, and talked of in hushed tones. We now acknowledge the scale and widespread nature of what many women have to cope with. We have heard many stories in the debate. However, I do not believe that we are adequately responsive, or that we provide correct and sufficient care. In the pandemic, we know that as with many other issues things are much worse. Women going into labour at the moment have not had the benefit of face-to-face antenatal classes, forming bonds with other expectant mothers for common support. They have not had the assurance that their partners can be there, or that their closest family and friends can visit within a few hours—or take part in baby groups or have post-natal visits. All of that is against the background of lockdown—perhaps a feeling of isolation, financial worries or keeping other children amused, cared for, or home-schooled.

A mother’s poor mental health can affect the future outcomes for the child, as we have heard, and that knowledge must be uppermost in our minds. We have heard stories in the debate of the disruptions to life, and the impact on the mental health of both mother and child. It is clear that we need to listen to all that, and act. Listen to the mothers now and in future, about how they are struggling; listen to those who have struggled in the past. With no support network, and delays for treatment, we need to ensure that there is support from healthcare professionals with sufficient training. We need funding. We need a system that provides robust, integrated physical and mental healthcare for new mothers. Maternal mental health must be a priority for the Government, not only for the future wellbeing of mothers, but for all our children.

Covid-19

Christine Jardine Excerpts

Monday 22nd February 2021 Commons Chamber

[Christine Jardine (Edinburgh West) (LD) [V]]

A year ago, covid-19 was a distant threat. Today, it has claimed more than 100,000 lives and damaged tens of thousands more in this country. In its wake, it has left us with the worst death rate in Europe and an ailing economy.

We all, I am sure, welcome the terrific progress that has been made in vaccinating millions of people. It is that vaccination programme that will protect us all in the future. It will help to protect our NHS from being overwhelmed in the way that we heard from the Minister it almost was at the turn of the year. We need to protect and support our magnificent NHS staff, who have risked their own health on the frontline—many of them are foreign nationals with no guarantee that they will be able to stay—and those who look after mental health, which we know has come under immense pressure across the country.

I regret that I have to disagree with the hon. Members for Central Ayrshire (Dr Whitford) and for Aberdeen South (Stephen Flynn). The picture that Scottish National party Members paint in this place of their Government’s glorious success in leading the fight against covid-19 in Scotland and rolling out the vaccine north of the border is not, I am afraid, reflected in the daily calls I receive from constituents, as many others do, who watched the success down south and compared it with the delays we were encountering in Scotland. The people of Scotland, in my constituency and in many others, deserve much more respect for what they have endured and achieved in this past year. They deserve those of us who serve them to put all our attention, our sole focus, on recovering from the health and economic impact of this pandemic.

Tomorrow we are due to hear the latest unemployment figures and learn just how many jobs have been lost, and how many families are now paying the economic cost of the pandemic. The vaccine is crucial in fighting the health war, but we need a bold innovative plan next week from the Chancellor to rebuild and repair our economy to help the countless small businesses—retailers, florists, cafés, bars, taxi drivers—many of which are in my constituency of Edinburgh West. We need furlough extended and finally an acknowledgement of the thousands —no, millions—of people who have had no financial support at all in this crisis. No more patchwork reactions from the Chancellor, but a clear comprehensive plan for small businesses. The tourist industry, events, and our aviation sector, which is facing the biggest threat in its history, all need support.

My hon. Friend the Member for Twickenham (Munira Wilson) called for a resilience fund for our children and young people who have so often been forgotten. They need the best support we can offer. That must not end with the reopening of the schools; that is a step, not a solution.

We all want to see an end to lockdown and covid itself, to feel secure in our daily lives and be able to share them again with our families and friends. We have made progress, but we have so much more to do—

[Mr Deputy Speaker (Mr Nigel Evans)]

Sorry Christine. I call Jacob Young.

Covid-19: Dental Services

Christine Jardine Excerpts

Thursday 14th January 2021 Commons Chamber

[Christine Jardine (Edinburgh West) (LD) [V]]

One of the more surprising effects of covid-19 is that I miss going to the dentist—a phrase I never expected to use. Although we might recognise the impact on ourselves, we should be in no doubt about how difficult the situation has been for those who continue to work and provide vital dental services in the pandemic. It is different from the situation in hospitals, but still difficult and exhausting, and it carries the constant underlying worry of infection.

The situation affects the whole UK. I hope that the Government will take the impact on dental health into account in discussions with Holyrood. That is a significant motivation for me today, because we have accounts of problems across the UK. James Craig of the Scottish Dental Association has described the experience of wearing a respiratory mask so tight that it was like breathing through a pillow. Another dentist felt that the profession had been thrown under a bus. Dentists have had to try to deal with public demand and then abuse when they cannot deliver through no fault of their own.

We must also accept that there are wider consequences for our health services as existing NHS dental health care becomes stretched, meaning that NHS-commissioned activity targeted at oral health inequality will be at risk. Many of us could find it difficult to get timely access to urgent, unscheduled dental work. As that begins to take hold, increased unmet care will have a widespread impact on our general health and wellbeing, leading to more and more people turning to GPs, emergency care and potentially hospital admissions.

Research shows that, as with so many of the impacts and so much of the collateral damage from covid-19, the vulnerable will suffer most. That will exacerbate the health inequality on which the pandemic has brought a stark focus.

Recently, I was contacted about an issue that young dentists assure me affects them across the UK. Associate dentists’ earnings have been halved because their payment is based on the work they carry out and the number of NHS patients on their books. We are currently awaiting the outcome of discussions between Holyrood and BDA Scotland to find a solution. Like everyone else affected by the pandemic, they need a solution soon.

 I once put off having a toothache checked out, because it was not much of a nuisance and I was busy with other more important and pressing stuff; I would mention it at my next check-up. Before that was due, it flared up, became much worse, and I needed emergency root canal treatment. I also got a lecture from my dentist about leaving problems so that they escalate and become more serious. It is sound advice that we should perhaps listen to in this situation.

[Mr Deputy Speaker (Mr Nigel Evans)]

I call Janet Daby. Janet, I will stop you at 4.42 pm, so please ignore the clock at the bottom of the left-hand side. Then we will come to the Front-Bench contributions.