Jim Shannon
Main Page: Jim Shannon (Democratic Unionist Party - Strangford)(3 years ago)
Commons ChamberRead Full debate Read Hansard Text Watch Debate
Jeff Smith (Manchester, Withington) (Lab)
I beg to move, That the Bill be now read a Second time.
Before I begin, I want to thank briefly a number of people who have advised me and helped bring this Bill forward today. Among others, particular thanks go to Professor Mike Barnes and Professor David Nutt; to Rudi Fortson; to the parents of children with treatment-resistant epilepsy who have talked to me—Hannah Deacon, Matt Hughes and Emma Appleby; to Peter Carroll and the great campaigners at End Our Pain; to the brilliant Adam in the Public Bill Office here in Parliament; and to Alex Worrell in my office in Parliament.
We have a problem that is acknowledged in this House—across this House, I think—and certainly outside this House, and I know that Ministers also appreciate the problem and want to try to find a way around it. That problem is that medical cannabis—cannabis-based medical products—is a very helpful and effective treatment for a number of medical conditions, but significant numbers of people who would benefit from being prescribed medical cannabis on the NHS are not able to get the prescriptions that they need.
When I was drawn in the private Members’ Bill ballot, I wanted to try to find a legislative way forward to address this problem. I had hoped to agree an approach with the Government. I had a number of conversations with Ministers. I do believe that Ministers want to find a way forward on this but, unfortunately, that has not been possible, which is why I have put forward the proposals that are before us today. As I say, I do not think there is a lack of will from the Government, but that reflects an inflexibility in the system, which is at the root of the problem. The Bill’s modest proposals try to find a way to help overcome the barriers. It is not a magic bullet and it will not resolve all the problems, but in due course it might help some patients to get the medicine that they need.
Jim Shannon (Strangford) (DUP)
I am very supportive of the hon. Gentleman’s Bill. My constituent Sophia Gibson—she is a young girl—and her mummy and daddy Danielle and Darren got medicinal cannabis. Some hon. Members will know the story and about how we went to the previous Minister. I can vouch for medicinal cannabis making the difference for that young girl by stopping her epilepsy. She is better today because of access to medicinal cannabis.
Jeff Smith
I thank the hon. Gentleman for his intervention. That is one example of a significant number where lives have been transformed by this medicine. There is frustration that people cannot get it as they should.
When the Government passed the Misuse of Drugs (Amendments) (Cannabis and Licence Fees) (England, Wales and Scotland) Regulations 2018, which moved cannabis from schedule 1 to schedule 2, it became legal for clinicians on the specialist register to prescribe cannabis-based medical products. That legalisation came in the wake of a high-profile campaign by patients who were unable to get the medicine that they needed. The highest-profile cases—many will remember Alfie Dingley and Billy Caldwell—were of children with severe treatment-resistant epilepsy. Medical cannabis helped their conditions remarkably, as the hon. Gentleman just outlined, but generally they had to get it from abroad—usually from the Netherlands—or on the illegal market.
The 2018 regulations, which legalised cannabis-based medical products, offered a hopeful way forward for those children and others. Hon. Members and the public would be forgiven for thinking that the problem was resolved, but, three years later, only three prescriptions for medical cannabis have been obtained through the NHS—three prescriptions in three years. Cannabis-based medical products are an appropriate treatment for a larger number of people and they have been able to access private prescriptions, but often they pay a fortune. I am told that there are about 10,000 private prescriptions for cannabis-based medicines in the UK for various conditions, including chronic pain, Tourette’s, anxiety and epilepsy, but virtually no one can access them on our national health service.
Katherine Fletcher
I made the comparison with thalidomide because it was an inappropriately researched product that had hugely deleterious effects, because people were not looking properly. I am happy to clarify for the record that I am in no way suggesting that medicinal cannabis could have the same side effects as thalidomide. I am talking about the scientific method.
Katherine Fletcher
This sitting Fridays thing is fascinating. I would absolutely love to give way.
Jim Shannon
The hon. Lady refers to evidence. Sophia Gibson, the daughter of my constituents, has had the use of medicinal cannabis for three and a half years. It has greatly improved her quality of life, reduced her epileptic fits and given her the opportunity to transcend from primary school to secondary school this year. Her parents have a very strong evidential base that it works.
Jim Shannon (Strangford) (DUP)
It is a pleasure to follow the hon. Member for Dover (Mrs Elphicke). I wholeheartedly agree with her point of view, as do other hon. Members. I refer to what she said about “completing the journey”, which is what we want to do today, so that we can get to where we want to be. I commend the hon. Member for Manchester, Withington (Jeff Smith) for bringing forward the Bill, which I am pleased to see being debated in the House. I commend the hon. Member for Middlesbrough (Andy McDonald) for his personal story, which served to emphasise to us in this House how important it is for the Bill to pass. I know that it was hard for him to tell us that story, but it was also hard for us to listen to it because we sympathised with him. I thank him for sharing his story and for giving us that force of personal experience, which makes a difference.
I thank you, Madam Deputy Speaker, for allowing me to speak this morning. I will not detain the House for long; I intend to keep my comments fairly concise. I shall give as an example one story, which I will leave with the House. Along with other Members, who are all in their places today, I am well known for advocating medicinal cannabis under specific circumstances. I fought furiously for young Sophia Gibson in Newtownards to get the medication that her parents knew would make a difference to that sweet little darling of a girl. The following note is from her mum and dad who fought night and day for their child. They went to live in Holland, as others have said, and tried to raise funds. They did all of this alone and in desperation, which underlines the battle that is faced by parents throughout the United Kingdom of Great Britain and Northern Ireland and why I am supportive of access to medicinal cannabis in certain circumstances. As the hon. Member for Dover said, I am not talking about a universal application or prescription for medicinal cannabis; it is specifically for those whom it can help from a medicinal point of view. That is what I have always said. Perhaps I put things very simply, but that is what I think this Bill is about, which is why I support it.
I do not want to take too long, but I will quote the parents’ story:
“Three years ago, our lives were changed when Sophia received the great news that she would get her whole plant medicinal cannabis medicine via an NHS prescription. The expert panel was set up to help children like our daughter, but was quickly scrapped. Three years ago, the law surrounding medicinal cannabis was changed, but nothing has changed since. There are still only three whole plant medicinal cannabis NHS prescriptions in the United Kingdom. Why, we asked, when this marvellous medicine has kept our daughter out of hospital for over three years, has improved her life immensely, and kept her seizures the most controlled that they have ever been in all her young life. Some say that this is classed as anecdotal evidence”—
I say that it is not. It is real evidence, as the hon. Members for Dover and for Manchester, Withington have also said—
“but we are with Sophia the most and see the difference. The hospital records speak volumes: Sophia has not needed to avail herself of ambulances, of A&E visits and of hospital ward visits for over three years.”
Is that not evidential basis for thinking that change can make a difference? I respect the fact that others have much more understanding of medical and health matters than I, but, I have seen evidence from my constituents. The parents continue:
“These are facts. Why can’t other children and adults avail themselves of this medicine via the NHS? Why has it become a two-tier system that, if you have the money, you can avail yourself of it? Why are so many forced into fundraising, selling their personal belongings, or taking loans out just to keep their loved ones safe?”
The hon. Member for Middlesbrough referred to that. The parents said:
“Imagine every month having to add over £1,000 to your essential bills for a medicine, because that is exactly what some families are forced to do, being so scared that if you don’t have that money what will happen to your child.”
That is the reality for some in the United Kingdom today. Let me read on:
“We know we are blessed and so fortunate to have an NHS script because we know that we couldn’t afford that money each month for a private prescription. We thought three years ago that, after the three prescriptions, many more would follow, and what a let-down it has been. Soul destroying for us because you feel bad that you have an NHS script and others don’t. Why do our loved ones need to suffer—whether it be physically with seizures or mentally—and have this additional stress when, three years after a standstill, we have some of the best resources, doctors and health service in the world?”
I pay tribute to our NHS and to everyone involved. In this House, we are privileged to have those who make a contribution to it every day. The parents end with these words:
“We could have been leading the way, but instead we are stalling, passing the buck with no answers or resolutions for these families. How many more lives will be taken or be at risk before they can get the medication that they want”—
that is what the hon. Member for Dover said and that is what I endorse as well. They said:
“Families have enough stress and worry without having to do all this. We hope someone, somewhere”—
in this House—
truly listens and can have the answers for us all.”
That is a wee summary of Sophia’s story.
Sophia has not been in hospital since July 2018, which is three and a half years ago. Her seizures have reduced dramatically and are managed at home, as they are so brief. The change is almost miraculous, yet families throughout the UK are forced into a two-tier system where if they can afford a private script to help their child, they can have it. Sophia’s parents have said, “We know we are blessed”—and they are—“and so fortunate”. They still to this day do not know why Sophia’s consultant had a change of heart, but he did, and my constituents today benefit from that and his courage to stand out from the crowd and take a chance on the only medicine that has helped Sophia.
This year marks the end of Sophia’s time in primary school and her transitioning into high school next year. Did Sophia’s parents ever think that would happen? There were times they thought they would never see the day, as they thought on many occasions that they would lose her. They and we thank God every day that her neurologist in Belfast prescribes the medicine. Whole-plant medicinal cannabis worked for their precious little girl. We just need other NHS neurologists to listen and take the chance and give all those loved ones a chance at a better quality of life.
I understand that people have a different point of view, and I always respect other points of view, even though I may not agree with them, but I urge those who are not yet convinced—I look to the Minister, for whom I have great respect on a personal basis and as a Minister, and she knows that—that today we have an opportunity to change lives in this House with something that I have seen makes a difference.
To conclude, nothing I could say could explain it better than Sophia’s story. That is why I stand today for Sophia Gibson’s story, and also for the family of Jorja in Dundonald in the constituency of my hon. Friend the Member for Belfast East (Gavin Robinson), so that they can have the new life they need for their child, like with Sophia. I again commend the hon. Member for Manchester, Withington on bringing forward the Bill. I implore—others have said they would beg, and I would beg if that is what it takes—the Minister to make the change and make it happen today. It will save lives. It will lift quality of life and it will, I believe, be an answer to prayer.
Tonia Antoniazzi (Gower) (Lab)
I rise to support the Bill. I am very proud of the work that my hon. Friend the Member for Manchester, Withington (Jeff Smith) has done to break the barrier that is there. I commend the hon. Member for Dover (Mrs Elphicke); I know Emma Appleby and Teagan very well, and I listened with joy to the hon. Member’s words, which show her great understanding of the situation that Emma finds herself in for her child to survive. She is one of many parents we work with. As co-chair of the all-party parliamentary group for access to medical cannabis under prescription— with the hon. Member for South Leicestershire (Alberto Costa)—I am very proud of our work, particularly with the hon. Member’s predecessor, the right hon. Member for Hemel Hempstead (Sir Mike Penning).
This has been a journey. I have been in this House for nearly four and a half years, which is not a long time—I am quite a youngster by many standards—but I remember standing at the doors on a Friday, overhearing the conversations of peers from across the House. Basically, they were laughing at a Bill introduced by my late hon. Friend the Member for Newport West, Paul Flynn. It really did break my heart, because Paul worked tirelessly to break that barrier and get medicinal cannabis legalised. Soon after he passed away, we had a breakthrough thanks to the campaigning of the right hon. Member for Hemel Hempstead, the End Our Pain organisation and the tireless work of Hannah Deacon and Peter Carroll. Those people must be remembered in this House, along with the many, many parents and people working alongside them, as well as the hon. Member for Reigate (Crispin Blunt). Many people are fighting for the cause.
We are in a ridiculous situation, and I am very emotional. My hon. Friend the Member for Middlesbrough (Andy McDonald) has spelled out what it is like to be a parent and have that loss. I cannot even bring myself to imagine it. It does not matter whether you are a parent or not; to see these children is heartbreaking. It is four and a half years since I stood here incredulous at the mockery made of the Bill that was being brought forward. The law has changed; we have had three prescriptions on the NHS. We have had no other change.
I thank the Minister and the Secretary of State for our recent conversations about this situation. While there is a lot of empathy in this House, there is little action. I have stood with the parents and we have had many meetings here in the House. Members have gone to meet the parents and sometimes the children—most recently outside of the House because of covid regulations—to hear their story at first hand, and there is an empathy. But those parents and children have had to wait. They had to wait because Brexit was going on and they were on the back burner; they had to wait again because there was an election in 2019 and they were put on the back burner; and then there was covid, albeit nobody saw that coming, and they had to wait. They have been hospitalised, they have not been able to get hold of their prescriptions, there have been problems in fundraising to get their prescriptions and, as has been said, they have been unable to pay for their prescriptions, even having to sell their house. The situation they have been put in is inhumane.
I see that the hon. Member for South Ribble (Katherine Fletcher) is leaving, but I was going to pay tribute to her. I am so glad that she has engaged with this debate with her constituent Joanne and Joanne’s son Ben. It is wonderful that she has listened to them and continues to want to fight, even though she knows Joanne will not be voting for her, which is very amusing for us. It is good that there is that engagement. I do not stand here with a geeky knowledge of science, to use the hon. Lady’s words, or as a general practitioner, but I stand here with four and a half years’ experience—the experience of a mother—to see the passage of the tireless work that has been done across the House, only for nothing to have changed. That is why I pay tribute to the Bill.
Jim Shannon
The hon. Lady is right. If the Government are not minded to support the Bill, as it seems they may not be, does she, like me, ask, “Well if you’re not going to help, what are you going to do?”
Tonia Antoniazzi
Absolutely. I really want to know what they are going to do. This has been collaborative, cross-party work, and I have had good conversations with the Secretary of State this week and with the Minister a week ago. The solution that has been put forward to me is quite interesting. They say, “Oh, well you could find one of these drug companies that you know and work with, and maybe they could put an observational trial together, and we could have the conversations with the necessary bodies, we could work on this and then it could move forward”—this is the point I was coming to—“in another two to three years.” After four and a half years, we are already in a situation where some of these children are now adults, so we are going to be looking at another, completely different situation. This situation has to change.
My hon. Friend the Member for Manchester, Withington has worked tirelessly on the Bill, giving the Government an option to move this issue forward, yet yesterday I was told, “Don’t worry, Tonia; talk for as long as you like, because they’re going to talk it out anyway.” We have had debate upon debate upon debate. This is a private Member’s Bill. It would address the issues and move everything forward. That is the disappointment of this place. When the parents we work with know there is going to be a debate, they get all excited, and then nothing happens. Unfortunately, because of the way the parliamentary system works, that is how it is. That is why the Bill is so brilliant. It absolutely hits the nail on the head and I want it to pass—but we know that is unlikely.
We know there is a blockage in the system. I will not stand here and call out where I think that blockage is, but it is my personal view and my experience. It is what I have read and what I know. When somebody very high up in the system says, “We do not want this to happen,” it usually does not happen. There is a blockage, and that blockage has to be broken down. I am not a GP or a medical expert, but it is wrong that this is not being looked into properly.
In the conversations that the right hon. Member for Hemel Hempstead and I had with the NHS we were promised an observational clinical trial, but that had changed to an RCT by the time of our next conversation with the same people. Why? We had the perfect situation. These children were already on the medicine and were already proving that it makes their lives better.