Oral Answers to Questions

Jim Shannon Excerpts

Tuesday 11th February 2025 Commons Chamber

[Karin Smyth]

I am incredibly sorry to hear about Cate’s experience. We want to ensure that women receive safe, personalised and compassionate maternity care and that women with the condition are supported. That is why we have asked the college to look at the guidance. I will of course be happy to meet my hon. Friend and his constituent.

[Jim Shannon (Strangford) (DUP)]

There is clearly a need to consider vasa praevia as part of antenatal care. The hon. Member for Crewe and Nantwich (Connor Naismith) set the scene very well and the Minister responded in a good fashion. This issue, which the hon. Member was right to highlight, is also an issue in Northern Ireland. Will the Minister share what is going forward here with representatives at the Northern Ireland Assembly?

[Karin Smyth]

I thank the hon. Member for that point. As he knows, I am always keen to ensure we share good practice across the United Kingdom so that his constituents, like mine, can benefit. We will work through the usual processes to ensure that happens.

--- Later in debate ---

[Karin Smyth]

We are absolutely committed to urgent treatment centres, which play a vital role in supporting patients, especially during periods of high demand. I understand that this is temporary, and that the centre is running a pilot. I know that my hon. Friend will work closely with his local integrated care board to ensure that it serves his constituency adequately.

[Jim Shannon (Strangford) (DUP)]

T5. There are 153,000 people in the United Kingdom living with Parkinson’s, and one in 137 will be diagnosed during their lifetimes. There are 18,000 new cases every year, 4,200 of them in Northern Ireland. Does the Secretary of State agree that it is time we had a Parkinson’s charity, not just for England but for Scotland, Wales and Northern Ireland as well? As I always say, let us do it better together.

[Wes Streeting]

Where have I heard that before? The hon. Member knows that I will agree with him on the matter of the Union, but I also believe that we should work cross-border wherever we can, especially when it comes to important issues such as Parkinson’s. We have to make better breakthroughs in research, treatment and, hopefully, finding a cure.

Maternal Mental Health

Jim Shannon Excerpts

Wednesday 5th February 2025 Westminster Hall

[Laura Kyrke-Smith (Aylesbury) (Lab)]

I beg to move,

That this House has considered maternal mental health.

It is a pleasure to serve under your chairship, Ms Furniss. I am so glad to have secured this debate on maternal mental health, which I know really matters to people in my constituency and across the country, yet it is still too easily overlooked. For me, it is also very personal. In 2021, I lost one of my best and most brilliant friends, Sophie, to suicide. She left behind her wonderful husband and three little girls, aged six, three and just 10 weeks at the time. Her death was an awful shock to us all, and I will never forget the moment I received the message from her husband, which said:

“I do not know how to say this and I cannot believe I am writing this, but Sophie died this morning.”

It was still the covid pandemic at the time. Sophie was very isolated, recovering from a C-section, staying at home, trying to protect herself and her baby from covid, and not wanting visitors, but we were in regular touch on WhatsApp, helping each other to navigate life with a little baby and two older siblings. Sophie was getting more and more concerned about her baby’s feeding, and it was causing her to suffer from increasingly bad insomnia. She took herself to A&E with concerns about the baby’s milk intake, which I suspect were more a reflection of her own anxiety than the baby’s feeding, and she spent a night there before being discharged. I do not know whether they asked her about her own mental health. What I do know is that the next day her messages were increasingly distressed, and two days later she took her own life.

Unfortunately, what Sophie went through is not uncommon. At least one in five people who give birth experience a mental health problem during pregnancy or after birth. In fact, while we hear a fair amount about physical conditions such as gestational diabetes and pre-eclampsia, it is mental ill health that is the most common complication of pregnancy in the UK.

[Jim Shannon (Strangford) (DUP)]

The fact that there are so many Members present is an indication of the importance of this subject. Does the hon. Lady agree that support is an essential component of maternal health and that, for those families who do not have extended support, charities such as Home-Start in my constituency, which have volunteers to go to help, are essential and should be more widely funded to help more young mothers who feel they are drowning to get a lifeline back to the surface?

[Laura Kyrke-Smith]

I agree with the hon. Member; that support is needed, and I will come on to that.

The causes of these mental health challenges are really varied. Some people will have past experiences of mental health problems or difficult childhood experiences. Some will struggle after a traumatic birth. Some will be experiencing stressful living conditions. Some evidence suggests there are biological or hormonal factors, and some people are at higher risk than others: young mums face particular risks, with post-natal depression up to twice as prevalent in teenage mothers compared with those aged 20 or over, and data suggests that post-natal depression and anxiety are 13% higher in black and other ethnic minority mothers than in white mothers.

People’s experiences of mental health are also really varied, ranging from mild to moderate conditions such as low self-esteem, anxiety and depression to more serious conditions including post-traumatic stress disorder and post-partum psychosis. While most people find a way through, perinatal mental health can be incredibly serious, as it was for Sophie.

National Cancer Plan

Jim Shannon Excerpts

Tuesday 4th February 2025 Commons Chamber

[Andrew Gwynne]

My hon. Friend has my full assurance that all cancers—all tumour types—will be an integral part of the national cancer plan. On rarer cancers, it is important that we use the call for evidence and the discussions we will have in the coming weeks and months to ensure that those voices are heard as we drive forward our plan.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister for his statement. His words always display the compassion and comfort that these types of statements should convey.

Does the Minister agree that it is time for the Government to do more to fund cancer research, rather than leaving charities to bear the burden? Cancer Research UK alone has invested more than £4 billion in research over the last 10 years. Will this plan ensure that groundbreaking research, such as that carried out at Queen’s University Belfast, will have enhanced funding for a world-class breakthrough in finding a cure for cancer? Will Northern Ireland be one of the UK’s 30 testing sites for women?

[Andrew Gwynne]

I thank my hon. Friend. I always call him my hon. Friend because I see more of him than I see of my wife. [Laughter.] Usually because we are in the same debates.

The hon. Member makes an important point about research, which will be a crucial aspect of the national cancer plan. Advances in technology, science and pharmaceuticals do not happen by accident; they happen because we fund the research to get to that point. We need to do much better in researching some of the rarer and less survivable cancers. Those scientists and charities must have access to the funds that are available so they can carry out the research we need.

As for where the 30 sites will be, that is above my pay grade. There are criteria, but I will take it back to my officials and see what we can do.

Accessibility of Radiotherapy

Jim Shannon Excerpts

Tuesday 4th February 2025 Westminster Hall

[Tim Farron]

My hon. Friend makes a good point. There is a combination of reasons, which I will come on to in a moment, but distance from treatment is undoubtedly the critical point that decides whether people can access and take advantage of lifesaving and life-prolonging treatment.

[Jim Shannon (Strangford) (DUP)]

rose—

[Tim Farron]

I feel that the hon. Member has a point to make.

[Jim Shannon]

First, I commend the hon. Member for championing this issue for all the years I have known him in this House. He deserves credit for that, he has got this debate in Westminster Hall today, and we are looking to the Minister for a response. Does the hon. Member agree that the issue goes more widely, and is also about recruitment? Training and retention of clinical oncologists is needed, with only seven in 10 training places filled in 2024. Does he agree that there is a way forward—bursaries for students, which could begin to fill the training needs in the long term? Students would understand that they will not live under the burden of student debt if they pick a career for life—in other words, help them with a bursary and the NHS will have them forever.

[Tim Farron]

I completely agree with the hon. Member. Many people watching the debate today, whether physically in the Gallery or on television outside, are part of that outstanding workforce, and we are massively grateful to them. What a career for someone to be in, where you are saving lives every day and alleviating pain. That is a wonderful thing, yet there are not enough of them. The workforce is part of the solution, as well as the challenge, to the problem that we face.

For us in Westmorland, longer journeys mean shorter lives. The answer is clear for us in Westmorland, and that is to build a satellite radiotherapy unit at the Westmorland general hospital in Kendal as part of the Rosemere unit, following the model of the many excellent satellite units around the UK. The number of cancer patients travelling from south Cumbria each year for radiotherapy provides demand for at least one linear accelerator at the Westmorland general hospital. If the experience of other new satellite centres around the country is replicated, such as at the new Hereford site, which is a satellite of Cheltenham, a satellite centre in Kendal would attract at least 20% more patients than existing demand, because people who would not have had radiotherapy treatment at all beforehand would now be able to access it, simply because it is closer to them. That a satellite unit in Kendal has not already happened is an indictment of the lack of responsiveness to the obvious need from NHS England, and of a lack of concern for cancer patients and their families who live in rural communities.

Women’s Health Strategy

Jim Shannon Excerpts

Thursday 30th January 2025 Commons Chamber

[Karin Smyth]

I thank the right hon. Gentleman for the work he does in this area. He does an excellent job and makes an excellent point. I do not know the detailed answer to that question—it is not directly my area—but I am very happy to make sure that we write to him.

[Jim Shannon (Strangford) (DUP)]

I thank the Minister very much for her answers. The women’s health survey for Northern Ireland closes tomorrow. Through it, the Department of Health back home is hoping to have a greater understanding of how government fails women. The results of this Northern Ireland-wide project will ensure the Department will be able to find the areas that are lacking, in particular endometriosis support. Will the Minister make contact with the Northern Ireland Assembly to discuss the health strategy and to share the results and the data, so that the UK Government and the Northern Ireland Assembly back home can work better together to make women’s health better across this great United Kingdom of Great Britain and Northern Ireland?

[Karin Smyth]

As I hope the hon. Gentleman knows, I think the health needs of women in Northern Ireland and the waiting lists there are particularly problematic, so finding out anything our Department can to do support or share learning across the United Kingdom is a personal commitment of mine. I will absolutely make sure that we do that. I am happy to meet, talk or even visit, which I always like doing.

Medicinal Cannabis

Jim Shannon Excerpts

Thursday 30th January 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered medicinal cannabis.

I invite Members to consider the benefits of medicinal cannabis, and I will address the challenges facing patients across the country. It is a pleasure to serve under your chairship, Ms McVey; I always appreciate the opportunity to do so, and it is good to see you in your place. It is also a pleasure to see other hon. Members in the Chamber for the debate. I look forward very much to the contribution from the shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), and particularly to hearing from the Minister. I know that this issue is not the Minister’s responsibility, but she always does her best to answer our queries. I spoke to her before the debate, and there are some things I want to ask her for, if that is all right.

I have been interested in this issue for many years, and I thank the Backbench Business Committee for granting this debate. Many Members will have been introduced to the issue of medicinal cannabis by constituents who got in contact with them. In a way, it is a bit of a niche debate, and those Members who are here have specific asks. The right hon. Member for Dumfriesshire, Clydesdale and Tweeddale (David Mundell) has been a stalwart on this issue over the years. I am pleased to see him here to provide support, and he will probably ask the more difficult questions, given his particular knowledge.

Many Members will have been told by their constituents about the real difference medicinal cannabis has made, or could make, to their lives or those of their families. I asked a former Conservative Minister, Nick Hurd, for a meeting about a constituent some years ago, which he very kindly granted. I asked, “Would it be okay if I brought over the mother of Sophia, the young girl we are trying to help?” I knew that if I brought Danielle over —formidable lady that she is—she would be much more able to push the case, and of course she did. In all fairness to the Minister, he was impressed by her commitment on behalf of Sophia.

In my office, I have a picture of that wee girl when she was a five or six-year-old. At that age, she was having multiple seizures, but through the Minister here and back home, she was allocated medicinal cannabis. Her seizures, which happened multiple times every day, have been reduced to either none in a day or just one. If that is not an evidential base to prove the case for medicinal cannabis, I would like to know what is. That campaign is one that I have been wholeheartedly behind. Sophia Gibson’s mum and dad told me about the needs of their beautiful daughter, and I was absolutely won over to the fight for medicinal cannabis for very defined purposes. I have fought hard for Sophia and those like her.

Sophia’s mum and dad have sent me some information that is relevant to this issue, which I will quote for the record. Sophia was six when we first met, but she is now 13, and everyone involved in her care agrees that

“this is the most stable she has ever been”—

that is what her neurologist and paediatrician said at the last appointment Sophia had just before Christmas. Her school principal described the change Sophia has experienced since receiving this medicine, saying:

“I remember the times poor Sophia had a seizure and we were waiting on ambulances”—

that was when she was five or six, and I remember that. But her principal went on to say:

“what a change it has been for her in school since the medicine.”

Sophia’s mum says:

“with less seizures Sophia’s skills are growing and even her speech therapist and physio have said she’s doing really well all thanks to wholeplant medicinal cannabis.”

Now Sophia has reached her 13th birthday, and I put on my record my thanks to the former Minister for that. He got that medication prescribed for my constituent Sophia—Danielle and Darren’s young girl.

The legislation on medicinal cannabis in 2018 was a significant step forward for patients, as it ended the potential criminalisation of those living with, or just trying to manage, chronic conditions, but access to medicinal cannabis remains limited. There is compelling evidence that it can improve the quality of life of individuals with chronic conditions, including neurological disorders such as Parkinson’s, attention deficit hyperactivity disorder, epilepsy and multiple sclerosis.

However, since medicinal cannabis was made legal, only five patients have been prescribed it on the NHS. I was pleased that young Sophia was one of them, and although she is undoubtedly not a well child, her parents believe that medicinal cannabis has played a part in her still being with them to brighten their days with her smile and her infectious joy. I know young Sophia personally, and I can vouch for the difference I have seen between her at the age of five or six and the 13-year-old she is today. Her improvement has brought joy to her parents, and indeed to every one of us who knows her. Her epileptic fits are down to zero, or one and no more, so that treatment really is important.

I also wish to bring the case of Ben to hon. Members’ attention. Joanne, his mum, is here on his behalf, and their MP, the hon. Member for South Ribble (Mr Foster), would have been here, but unfortunately he had other engagements. I spoke to the Minister beforehand, so she knows what I am going to ask. The hon. Gentleman is very supportive of Ben, Joanne and her husband, and is keen to help.

Young Ben’s story is also incredible, and his mum can vouch for his problems. He was having up to 300 seizures per day. Can you imagine that? That wee boy was having seizures almost every other minute of the day. His parents are providing the medication themselves, but the NHS should be playing that role. It costs the family £2,000 a month, but they love their child and will do anything to help him.

To get the correct medication, people have to go through trials, and Joanne told me that Ben had failed 14 medications. The NHS says that if someone fails seven medications, they go directly on to medicinal cannabis. For the life of me, I cannot understand why that has not happened for young Ben. I ask the Minister whether it would be possible for her to meet Joanne and her MP, so that Joanne can put forward her case and find out why medicinal cannabis has not been approved for that wee boy.

Today, I saw a quick video of Ben when he was having all those problems and showing what he can do when he has access to medicinal cannabis. If ever we needed straightforward evidence that looks us straight in the eye, it is that. These exceptional circumstances require exceptional assistance.

Ben has now had a 98% reduction in seizures, because his mum and dad are paying for the medicinal cannabis, even though they should qualify for it. There seem to be some problems, so I ask the Minister to please meet the parents and their MP, so that they can make that case. I want to put that on the record for Joanne.

There is compelling evidence that medicinal cannabis can improve quality of life. The state of legality, but inaccessibility, is incredibly difficult for clinicians, who believe that their patients merit additional help. Subsequently, patients are not being given the proper care, because of challenges including a lack of awareness of the legislation and poor signposting of the treatments. It is incredibly hard to comprehend why we cannot get everyone on a pathway to better care. But when you meet the mums and dads and some of the children that I and other Members have met, you can understand the alternative and what it means.

A recent survey of 250 practising doctors by Alternaleaf —some of its staff are here in the audience today as well—found overwhelming support for widening the accessibility of medicinal cannabis to treat chronic pain. It found that 84% of UK doctors—the figures are massive —said they would be open to prescribing medicinal cannabis to manage chronic pain if it were part of the NHS toolkit.

I welcome the commitment from the Government and the Secretary of State, who told us in the main Chamber that £26 billion will be available for the NHS over the next few years. That is a good plan, and everybody, no matter their political persuasion, will welcome it, but we need to see some of that going towards this critical issue.

Alternaleaf patients rated the effectiveness of medicinal cannabis to be 8.5 out of 10, versus only 4.5 out of 10 for traditional medication prescribed on the NHS. We are not being critical, but we are pointing to the facts —the evidence is there. If it is better to have medicinal cannabis, let us have it if the alternative is not as effective.

Unlike many conventional painkillers, medicinal cannabis offers relief from symptoms without the high risk of dependency, overdose or debilitating side effects. Only 17% of Alternaleaf patients reported side effects from medicinal cannabis that affected their personal or work life, versus 88% for medication prescribed by the NHS. So there is a case to be made, and there are answers to be given.

Although private specialist clinics and pharmacies such as Alternaleaf support thousands of patients across the UK, they often receive conflicting guidance from regulators on product labelling, which can impact the availability of medicines for the patients who may benefit the most. We are here to raise awareness of that and to put the case for all those patients who might benefit most.

The UK has one of the strictest regulatory regimes in the world for the prescribing of medicinal cannabis, and I agree that that must be the case—that is not an issue. But if there is evidence that medicinal cannabis can do good, then let us act on it.

The regime includes a prohibition against prescriptions being issued electronically to patients. However, we must allow doctors to access medicinal cannabis for their patients in the same way that we allow them to access opioids for them—under strict and certain circumstances. There are rules in place, and I understand that.

I challenge the suggestion that electronic prescribing is always unsafe; it is not. Physical prescriptions are understandably at risk of being lost, damaged or destroyed, whereas electronic records can permit greater real-time oversight and control of prescribing practices, both by private clinics and by regulatory bodies such as the Care Quality Commission. The reason I believe that that could be done electronically is that controlled drugs such as morphine are routinely prescribed electronically on the NHS. If we can do it for morphine, we can do it for medicinal cannabis. That is my point. And it can work as well, which is more important.

However, there must be strict measures in place to ensure that electronic prescription can never be a route to simply legalising cannabis in general. I am not pro drugs in any way, but I see the goodness and benefits of medicinal cannabis. That is why we are here: to prove that case and to put forward the evidential base. Although the benefit of medicinal cannabis to individuals and their families, as well as the economic benefit that is starting to arise, is reason enough to review the current approach and address the challenges, this is absolutely not a call to legalise cannabis wholesale, in the same way that we could never consider wholesale opioid legalisation.

Medicinal cannabis has offered a lifeline to another of constituents, Richard Barber. He spent years struggling with chronic conditions. Initially, an injury led to a misdiagnosed shoulder condition, which resulted in prescribed painkillers that not only proved ineffective, but caused distressing side effects, such as night terrors. Those things cannot be ignored either.

After extensive research, Richard discussed medicinal cannabis with his GP. After trying three different pain medications without success, his GP suggested exploring medicinal cannabis as an alternative treatment approach. Richard was prescribed medicinal cannabis through Alternaleaf and the results have been transformative for his condition. He has regained the ability to do the little things that people take for granted, such as going to the shops and walking his dogs, which he was unable to do in the past due to mobility issues, pain and seizures.

Richard’s story highlights some of the challenges that patients across the UK are facing. When Richard was first prescribed medicinal cannabis, he got in touch with his local police force—that is the right thing to do—to ensure that it was aware of the legality, yet the officers had never been informed about legal medicinal cannabis prescriptions. In fact, one in five police officers does not know that medicinal cannabis is legal and 89% of police officers say that they would benefit from more training on medicinal cannabis. That is not the Minister’s responsibility, but there is a role for another Government Department to look at that. That lack of awareness can manifest in patients being challenged in public when using legal products to manage their conditions, causing unnecessary distress to those in receipt of medicinal cannabis for a medical reason.

Patients are also finding that their landlords are unaware that medicinal cannabis is legal, when the Equality Act 2010 mandates that landlords, housing associations and property managers make reasonable adjustments to accommodate tenants’ medical needs, including the use of prescribed medicinal cannabis where appropriate. There are lots of issues, including the need for better awareness among the police and more accessibility for all our constituents across this great United Kingdom of Great Britain and Northern Ireland.

This debate is not new. The End Our Pain campaign has presented ways forward, and I ask the Minister once again to consider its trials; I am ever mindful that she will be conveying what we are asking for to another Minister. In 2019, the Health and Social Care Committee recommended initiating observational trials for patients already using cannabis-based medicines who cannot enter the randomised controlled trials. That recommendation initially had support from the Government, but that was retracted during the covid-19 pandemic.

In 2023, the Home Affairs Committee reaffirmed the need for increased access to these vital treatments. We all understand that there were pressures from all sides during covid-19, but that unfortunate suspension of support threw the trials back a few years. If the Home Affairs Committee reaffirmed that need for increased access in 2023, however, we need to make sure that that happens, and fully.

There is a notable precedent from 2013, when the Government granted a licence to GW Pharmaceuticals to supply Epidyolex to a child given only six months to live. These are true stories; I am not making any of them up. That decision not only saved that child’s life, but provided valuable evidence to the National Institute for Health and Care Excellence, highlighting the need for similar decisive action today. The treatments make lives better—they save lives—contribute to easing the pain and suffering of children and adults and give peace of mind to families.

End Our Pain proposes two observational trials. The operative word is trial—if they are not suitable, they can and should be shut down. Observational trial 1 would support individuals who are already prescribed medicinal cannabis and cannot undergo a dangerous washout period to enter a traditional RCT trial. Those patients could be funded to provide crucial data on the long-term use of their current and previous cannabis oil medicines. That was the original plan. Observational trial 2 would focus on children in desperate need—just like Sophia, Darren and Danielle’s wee girl, and Ben, the son of Joanne, who is in the Public Gallery. Many families are resorting to the black market due to insufficient private paediatric prescribers and wish to find a regulated, safer option for their children while maintaining their anonymity.

EOP has engaged with Melissa Sturgess, the CEO of Ananda Developments, which is willing to supply trial medicines early to those in urgent need—patients who may not survive the wait for trial recruitment to begin in 12 months. I have heard stories of people who are waiting for medicinal cannabis and whose health has been quite severely affected. Perhaps I view things too simply, but if I see a way of doing things, I think that we should just do those things and make a difference. There are patients who may not survive for the trial recruitment to begin in 12 months, for instance. Where will they be in 12 months? Where will their health be in 12 months? It will be worse, so we should be doing something right now.

EOP also believes that the data from current full extract prescriptions can be a significant aid in developing future treatments and improving long-term outcomes. It is estimated that the observational trial for those who are currently prescribed cannabis-based medicines but who cannot participate in other trials would cost approximately £2.7 million annually. That figure is based on an estimate of 150 children and young adults participating, with an average cost of £1,500 per patient per month. Given the good that that treatment could do and the difference it could make to people’s lives, that is a small price to pay for improved health for all those children and adults who could have a better life as a result.

It is imperative that the commitments to families are honoured, as the consequences of inaction could be devastating for those children. Many of their parents can no longer afford the cost of medication. I have given Members an idea about Joanne, who is here in the Public Gallery on behalf of her boy Ben, and what it costs her to provide the medication each month to ensure that Ben’s life-threatening seizures can be managed. It is really important that we get this matter right.

This debate will help to highlight the real impact that medicinal cannabis can have not only on patients and their families but on economic growth and how we can better spend the £26 billion that the Government have allocated for the NHS. It will also highlight how we can ensure that medicinal cannabis can make a difference for young people in my constituency and in Scotland, Wales and England. The Minister is a compassionate and understanding lady and, by her very nature, she wants to make lives better—that is what we are all here for. We beseech our Government and our Minister to make decisions that we can all support.

The hon. Member for Mid Dunbartonshire (Susan Murray), the Liberal Democrat spokesperson, told me before the debate that she will also talk about some personal experiences. We express such experiences on behalf of our constituents and others who, when we meet them, make us suddenly realise, “Yes, there is a simple way forward. There is a way that we can do it.”

We are also asking for consistency; it should not just be about the postcode that people live in. There has been an allocation of medicinal cannabis, and my constituent is one of those who benefited from that; I believe that others who could benefit should also be allowed to. We need consistency and coherence for the industry and to enable wider access to medicinal cannabis for those who could benefit in certain medically defined circumstances. We need the signposting of treatments, and we need to break down the persistent stigma and discrimination that patients face—perhaps from police, and from employers and landlords.

I have taken up enough time, and I am keen to hear the helpful contributions from other hon. Members who are here to back my plea on behalf of my constituents and others. Collectively, the parties can come together and act. We look beseechingly to the Minister and the Government to ensure that the offer of medicinal cannabis can be available for every child and adult in the United Kingdom of Great Britain and Northern Ireland who can benefit from it. If we have a goal and a way of achieving it, the Government might consider that it is cheaper to have medicinal cannabis available on prescription under very strict conditions to make sure that people’s lives are better. If we do that, we will have done a lot.

[Esther McVey (in the Chair)]

I remind Members that they need to bob if they wish to be called. I also remind Members that, if they wish to speak, they need to be here for both the opening and closing speeches.

--- Later in debate ---

[Jerome Mayhew (Broadland and Fakenham) (Con)]

It is a pleasure to see you in the Chair, Ms McVey. Do not worry, I have not defected. I just sat here, rather than where Conservatives would normally sit, because I did not want to interrupt the flow of the hon. Member for Strangford (Jim Shannon) while he was making his speech. I am grateful to him for securing this debate.

I am here because of one of my constituents, Matt Hughes, and particularly on behalf of his son, Charlie, who has severe treatment-resistant epilepsy. Mr Hughes has been to see me on a number of occasions. I am in the thick of a correspondence battle with the Department —the latest was in December last year—trying to deal with some of the problems that have arisen out of the 2018 NICE guideline change, which was brought in by Sajid Javid.

Somebody looking at the NICE guidelines would think, “Problem solved—wonderful! We can get access to these very important treatments for severely epileptic children.” But we are here today because that access is simply not available in practice. It is no good for us, as policymakers, to think that we have done the job because the policy has changed: if it is not working in practice, there was no point in changing the guidance.

There are a huge number of problems. There are licensing issues, to which I will return in more detail. There was the very unhelpful advice given by the British Paediatric Neurology Association in 2021, which seems to directly contravene the advice of NICE from 2018. There are many examples in which general practitioners have thought, after clinical assessment, that this kind of treatment, particularly second-generation drugs, should be supplied and yet local hospital advice was against it. Finally, there is the failure of the funding pathway. We have already heard about individual funding requests, but one problem is that the general application for many children to benefit from this kind of drug means that it fails the exceptionality test, so requests for individual funding are being refused on the grounds that the impact of the drug on the particular patient is insufficiently exceptional.

[Jim Shannon]

I thank the hon. Gentleman for coming along. I mentioned Joanne’s son Ben, who has failed 14 medications—the NHS says seven, so it is clear that there are failures in the system. We would think that the NHS should automatically respond, but it has not. That underlines the issue that the hon. Gentleman is raising.

[Jerome Mayhew]

That is the purpose of this debate: to encourage the Minister to get the NHS to change practice in this area. She could usefully start with the difficulty in licensing because second-generation medication is personalised. It does not have one or two active ingredients, but up to 20—that is probably not the right terminology but I hope we all understand—and the amounts of each of those active ingredients are personalised, in a patient-centric way. Yet we persist in applying a randomised controlled trial approach simply not appropriate for personalised medication. As a result, there is a failure to adopt licensing for medication that, anecdotally, is hugely effective, and has been hugely effective in supporting my constituent Charlie.

It is not beyond the wit of man to design an appropriate licensing system for this kind of medication because it has been done effectively elsewhere. We could look at the examples of Australia, Canada, the Netherlands, Spain, Portugal, Italy and even some states in the United States of America. If they can do it, why can’t we? I would be grateful if the Minister addressed that question specifically. Why do we persist with randomised control trials when we know that that acts against the adoption of this kind of modern medicine? Why does the Minister think that the licensing approach in all those first-world countries is in some way dangerous or inadequate?

Rather than repeating current policy, what change are the Government proposing to make to provide access through licensing for multiple active ingredient patient-centric dosing? What change are they proposing in relation to individual funding requests? Are they prepared to fix the problem of exceptionality, given that these drugs are routinely refused because they help too many children?

This is a huge issue. An estimated 35,000 children are affected. I hope the Minister will not dole out sympathy alone in her response, but set out the active change that the Government intend to make.

--- Later in debate ---

[The Minister for Secondary Care (Karin Smyth)]

It is a pleasure to serve under your chairship, Ms McVey. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this debate. As he said, there are many hon. Members from both sides of the House representing constituents affected by the issue across the United Kingdom who would have liked to be here today. Obviously, health is a devolved matter. The hon. Gentleman spoke movingly about his constituents, and other colleagues talked about theirs. I agree with him. My words have been repeated back to me, so I do not need to say them again. This is an important issue for everyone in the Chamber and those who are listening in, as we all want to support people who are in very difficult circumstances.

The hon. Gentleman raised some key issues, which I will address. He said that landlords and the police are unaware of the legality surrounding prescribed medicinal cannabis. I encourage him to take that up with the Deputy Prime Minister and the Home Secretary. I understand that the Home Office has notified all police forces about the change to the law, and guidance has been issued to summarise what that means.

The hon. Gentleman mentioned electronic prescribing, which has been in operation for schedule 2 and 3 controlled drugs in NHS primary care settings since 2019. I am afraid there are no current plans to extend that to private clinics at this time.

The hon. Gentleman also spoke about an observational study with a small patient cohort. I am afraid that it would not produce results as robust as a randomised control trial, which is the gold standard for clinical trials, nor would it add to the current evidence base. It would not provide results suitable to inform routine clinical or NHS commissioning decisions, because there would be no way to compare the findings with what would have happened in the absence of the intervention. I will come on to clinical trials in more detail, but let us be clear about the problem we face, the challenge faced by all of us involved in this debate and the challenge faced by children, many of whom have been mentioned today.

Of course, we listen to Members of this House, and to patients, parents and families, who say that these medicines are safe and should be available. We must ensure the safety and effectiveness of all medicines. The benefits should outweigh any potential harm and, as the hon. Gentleman outlined, clinicians must have that assurance and clarity, too.

There are currently only two cannabis-based medicines in the world with marketing authorisations or licence. They are—I hope I do not stumble over them too—Sativex, for the treatment of muscle spasms in multiple sclerosis, and Epidyolex, for treatment related to two rare forms of epilepsy and tuberous sclerosis complex. Those medicines show that it is possible to develop cannabis-based treatments that have been assessed for safety, quality and efficacy. The evidence generated on their clinical effectiveness and cost-effectiveness can enable the National Institute for Care and Health Excellence to recommend them for use in the NHS.

The medicines we are talking about today are unlicensed, which means that they have not been assessed by the Medicines and Healthcare products Regulatory Agency. Indeed, they have not been assessed or granted market authorisations by any medicines regulator anywhere in the world. However, as has been noted, in 2018 the then Home Secretary, Sajid Javid, enabled the prescription of unlicensed cannabis-based products for medicinal use. That provided a lawful route to these medicines for prescriptions for individual patients who were not benefiting from standard treatments and were not part of clinical trials, while limiting the ability to prescribe to specialist doctors. That came on the heels of the review by Professor Dame Sally Davies, then the chief medical officer, which found enough evidence of benefit to recommend that cannabis-based medicine should be moved out of schedule 1 to the Misuse of Drugs Regulations 2001.

For epilepsy, that evidence was mainly in relation to cannabidiol, also known as CBD, rather than products containing the psychoactive compound tetrahydrocannabinol, or THC. The review did not provide evidence to support routine prescribing or funding of those medicines on the NHS, which the previous Government should have made clear at the time. Before we see routine prescribing of these unlicensed medicines, the NHS must have greater assurance on their clinical effectiveness and cost-effectiveness at a population level. I am not a clinician—we are all here as politicians—and it is right that prescribing any medicine or treatment is a clinical decision, whether it is done on the NHS or privately. It is not for us to influence those decisions, so I cannot comment on individual cases.

We want to see more medicines approved by the MHRA and available on the NHS. We inherited a broken system, and it will take time to fix that failure, but the Chancellor has made an in-year investment in the NHS to fill the black hole that we inherited and prevent our having to cut back on services. That means that, more than ever, the NHS must account for every penny that it spends and make difficult decisions on what treatments are made available.

The NHS must get the best possible value for its investment in medicines and consider the cost-effectiveness of treatments to ensure that resources are used efficiently. For that to be fair, medicines or treatments initiated privately would not routinely be prescribed by the NHS unless the requested treatment was already approved under existing policies, which unlicensed medicinal cannabis is not, or when there are individual, exceptional circumstances. That remains the case even if privately funded treatment has been shown to have clinical benefit for an individual patient. This is the current NHS policy for all treatment initiated and prescribed privately, and it is not specific to medicinal cannabis.

[Jim Shannon]

I thank the Minister for her comprehensive response. A constituent of her colleague, the hon. Member for South Ribble (Mr Foster), is in the Gallery today. Her young boy, Ben, is receiving Bedrolite and Bedica, which are both proven to assist him in having a 98% reduction in fits. The same thing happens to my young constituent, wee Sophia, and to many others as well, including Charlie, the constituent of the hon. Member for Broadland and Fakenham (Jerome Mayhew). If there is a proven evidential base, which there quite clearly is, should it not be part of the evidential base for NICE to ensure that all these medications are taken on board?

[Karin Smyth]

I will come on to the research.

As we have heard, and as I recognise, fewer than five patients have accessed these medicines on the NHS, so access is truly exceptional. The testimony of the children and families accessing these treatments privately—often at great personal cost, as we have heard this afternoon—is truly heartbreaking. I am sure we can all agree that all Government spending on health must be evidence-based, and colleagues are seeking to ensure that that is the case.

If we are to see more cannabis-based medicines routinely available on the NHS, we need more research. The National Institute for Health and Care Research, also known as the NIHR, and the MHRA are there to support manufacturers and researchers to develop new medicines and design quality studies. I strongly encourage the manufacturers of those products to invest in research to prove that they are safe and effective and meet the rigorous standards that we rightly expect for all medicines. They should engage with the NIHR and the MHRA on clinical research and medicines licensing processes. That is key in providing doctors with the confidence to prescribe cannabis-based products in the same way that they use any other licensed medicines recommended for use on the NHS, but we are not waiting for industry to respond to patient voices.

The NIHR and NHS England have recently confirmed more than £8.5 million in funding for clinical trials to investigate whether cannabis-based medicines are effective in the treatment of drug-related epilepsies. As I said when we were in opposition, and as has been highlighted today, action in this space is vital. Epilepsy is a terrible disease, and it can be life-limiting in the most serious cases.

We also know that although epilepsy is a fairly common neurological condition, affecting 1% to 2% of the population, about 30% of cases will sadly have seizures that are resistant to current treatments, so it is absolutely right that the NIHR and NHS England are pioneering truly world-first trials that will investigate the safety and effectiveness of CBD and THC in adults and children with treatment-resistant epilepsy. The trials will be co-led by experts from University College London and Great Ormond Street hospital and will look to recruit around 480 patients from across the UK. The study details are published on the NIHR website, and I understand that it will publish further details soon.

Further funding has also been awarded to the University of Edinburgh to investigate the efficacy of CBD in patients with neuropathic pain due to chemotherapy. Those are two examples of the type of research that we desperately need in this area of medicine, and a further 28 studies looking at cannabis-based medicines have been approved by the MHRA since 2018. It is an emotive and complex debate, but the clinical trials give me encouragement that there is a way forward. If the evidence supports it, we will see more cannabis-based medicines approved by the regulators and recommended by NICE. That is the only way we will see the evidence base improved and give clinicians the confidence to prescribe.

To conclude, the hon. Member for Strangford has brought this debate forward with his customary good faith and compassion.

[Jim Shannon]

Will the hon. Lady give way?

[Karin Smyth]

I will take another intervention.

[Jim Shannon]

I am sorry. I am not intervening just for the heck of it; I just want a wee bit of clarification. I welcome the fact that the Minister is referring to the trials, and how long they are. I ask the Minister, very quickly: how long will it be before they are complete? Also, I asked the Minister beforehand if she would agree to a meeting with the hon. Member for South Ribble and his constituent just to clarify the matter and take forward the case for a wee bairn. Those are my two asks.

[Karin Smyth]

I cannot answer the question about trials and research directly because, obviously, trials are run by the specialists at NIHR, in the usual way, and I am sure that the request for meeting has been heard. It would probably not be with me, but I am sure the officials have heard it and that the hon. Gentleman will have a response.

I thank the Opposition spokesperson for reading out my contribution and highlighting how proactive we are being, only seven months since forming the new Government. I am proud that the trials that we are looking to do are world firsts. No other country in the world is taking the same action to prove that the medicines are safe and effective. I know it will not come as much consolation to those families who are at the end of their tether with talk of processes, debates and regulations. I also know it may not feel like it, based on some of the things I have said today, but I think there is a way forward. There may be some light at the end of the tunnel, and this Government will do what we can to support NHS England and the NIHR to get the trials done.

[Jim Shannon]

I thank all hon. Members who contributed. The debate has been very helpful—indeed, more helpful than most. The Minister is right that it is unfortunate that a number of hon. Members who wished to be here just could not attend, including the hon. Member for South Ribble (Mr Foster), as an example.

I thank, first of all, the right hon. Member for Dumfriesshire, Clydesdale and Tweeddale (David Mundell). I thank him for all his knowledge on the subject. It is always a pleasure to come and hear him make a contribution based on his knowledge and expertise. He also referred to the framework that is in place; he says it is “absurd”. That was the word that he used for the way that we do not have a system that seems to embrace the benefits of medicinal cannabis. He referred to the economic case, which is part of the issue. It cannot be ignored, because it is really important. The right hon. Gentleman has the knowledge to bring something forward that can work and I thank him for his contribution.

The right hon. Member for Orkney and Shetland (Mr Carmichael), in his intervention, referred to people resorting, as they do sometimes, to finding the capacity to source medicinal cannabis when the system does not work for them.

The hon. Member for Broadland and Fakenham (Jerome Mayhew) also referred to his constituent and his constituent’s son, Charlie. Nothing ever tells a story better than an example, and his wee Charlie and my wee Sophia—if I may refer to a constituent of mine like that —do very clearly illustrate the case. He also referred to the trial, which is perhaps not working. I think the Minister, in a way, tried to answer that question, to be fair, but our impatience is one of the issues. The hon. Member also raised exceptionality issues, and he referred to clinical pathways. A process that responds quickly is important.

The hon. Member for Mid Dunbartonshire (Susan Murray) brought forward her personal knowledge on the subject and it was helpful to have that contribution. As she said, no one in the UK should have to pay large fees when there is a product available to help that is evidentially proven. It is essential that we provide care and advantages for a better life, and that is what we are all trying to achieve.

The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), always brings his personal knowledge from his previous occupation—I do not say that to give him a big head. He referred to the NICE process. There is a way forward but, as he said, we need to empower and accelerate that process. The fact is that the 24,000 prescriptions in the UK are only part of the process, and there is much more to address.

I thank the Minister very much. Her final words were that there is light at the end of the tunnel. We have always got to be optimistic for our constituents and I think the Minister wants that to happen as well—I do not think it, I know that she wants that to happen. She also said she wants to support those who need help and the timescale for treatment is part of that. A message from the Gallery tells me that Bedrocan asked about trials and was told that a company had been found. I know that the Minister is not able to respond now, but perhaps she or her officials will come back to me and confirm where that is in the process.

Our whole objective in being here is to represent our constituents—to do our job the best we can on their behalf and to give them hope and solutions. Whether it is economic life or the personal or emotional help that people need, the debate has been used to raise awareness, which we all wish to do. On behalf of my constituents and other constituents across this whole United Kingdom of Great Britain and Northern Ireland, who we love and represent each day we are here, we ask that the Government move with urgency to provide the medicinal cannabis that we need.

Question put and agreed to.

Resolved,

That this House has considered medicinal cannabis.

A&E Services: Solihull Borough

Jim Shannon Excerpts

Monday 27th January 2025 Commons Chamber

[Saqib Bhatti]

The hon. Member makes an important point. Every winter we see the strain on our health services. Our professionals in hospitals and ambulance services always make an important contribution. His second question is really for the Government. I will talk a little more about the future vision for my constituents and his.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Member on securing this debate, and I share his concerns. In my constituency and the neighbouring one, units in North Down and Ards were closed and moved to Dundonald, putting pressure on that hospital. At the A&E at Dundonald—perhaps Solihull is the same—patients have to wait 14 hours to be seen for a heart attack. The A&E must be up to scratch. Travelling is one thing, but the A&E has to be able to respond. Does he agree that we need the right A&Es?

[Saqib Bhatti]

I cannot disagree with the hon. Gentleman. He makes a really valid point. Of course, it is about not just the travel time, but the time that is spent there. As I will come on to say, there is discussion about the A&E at Heartlands hospital, which has similar issues.

Rare Retinal Disease

Jim Shannon Excerpts

Thursday 23rd January 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered innovation in the field of rare retinal disease.

It is a real pleasure to serve under your chairship, Dame Siobhain. I very much look forward to the contribution of the Lib Dem spokesman, the hon. Member for Torbay (Steve Darling). I think his contribution will be a personal one and important to the debate. I am pleased to see the shadow Minister, the right hon. Member for Melton and Syston (Edward Argar), in his place, and I look forward to his contribution. I am also pleased to see the Minister here. I have given both the shadow Minister and the Minister my speech with my highlighted comments, as requested. I thank the hon. Members for Leicester South (Shockat Adam) and for Doncaster East and the Isle of Axholme (Lee Pitcher) for coming along.

I thank the Backbench Committee for granting the debate. I am aware that it is niche, because only 25,000 people across this great United Kingdom of Great Britain and Northern Ireland suffer from the condition, but it affects 25,000 people and 25,000 families. As one who has tried to promote rare diseases on every occasion, I asked for this debate; the Members in the Chamber today have a particular interest.

As the wearer of glasses since the young age of eight, which was not yesterday, I am thankful that the issues with my eyes are easily diagnosed and treated. My annual appointment with Mackey’s opticians in Newtownards keeps me right. It was with their help that I realised I had type 2 diabetes. With diabetes, we have to be a wee bit more careful with eyesight issues.

I remember going to an event in Cambridge, where I got my eyes tested on one of the new machines they had. A guy came up to me and said, “Jim, when was the last time you got your eyes tested?” I said, “I get them tested every year.” He said, “Well, here’s my read-out. Take it back to your optician.” I took it back, thinking I had glaucoma. My dad had glaucoma, so I was rather worried. I was probably a wee bit perturbed because I had been to my opticians a few months before and was not aware of anything. I went to my optician and she said, “Jim, do you want to do the big tests?” We did the big tests up in Belfast. They did everything that they could possibly do with my eyes, and thank goodness I did not have it. The point I am making is that it is really important that eyes are tested regularly.

There is a well-known saying that the eyes are the window to the soul, and so they are, but they also are an indication of overall health and therefore eye care is as vital as any other part of our national health. The hon. Member for Torbay and I talked before the debate. Chris McCausland, who did “Strictly Come Dancing”, has a rare retinal disease but look at what that man can do—his sense of humour, as a comedian, and his talent. He whizzed round the floor better than someone with full eyesight. He inspired the nation and rightly won.

Although rare diseases are individually rare, they are collectively common, with one in 17 people affected by a rare disease at some point in their lives. In the UK that equates to approximately 3.5 million people and 110,000 in Northern Ireland. My interest in rare disease goes back to the Northern Ireland Assembly where I served for 12 years before coming here. This debate today will focus on a niche rare disease, and specifically on rare diseases relating to retinal diseases that lead to sight loss.

Inherited retinal dystrophies—IRDs—is the collective term used to describe inherited sight loss conditions that occur when cells in the retina deteriorate in an unpredictable way. I will talk about research and development because that is really important. IRDs are the most common cause of blindness in children and working-age people in the United Kingdom of Great Britain and Northern Ireland. Although the conditions are rare, with some 25,000 people affected in the UK and 600 in Northern Ireland—some are my constituents, which is why I have introduced the debate—the impact on the people living with them is significant. When I ask people which sense they would not want to lose, they always say sight, because the eyes are the window to the world and to the soul—they help people appreciate what is around them. Although the other senses are also important, when someone loses their sight, they almost entirely lose the ability to know what is happening around them.

People living with rare retinal conditions not only face challenges in their day-to-day life caused by sight loss, but experience the added challenge of living with a rare condition and the impact it has on them and their families. That includes delays and complexity in getting a diagnosis. I know the Minister is always happy to respond positively and I look forward to her comments on how we can hurry up, or make easier, the process of getting a diagnosis.

Living with a rare condition also presents challenges in accessing treatment and specialist care. There is also a lack of awareness of these conditions. Some 95% of rare diseases currently lack an approved treatment and the existing standard of care for rare retinal diseases is equally limited, meaning there is high unmet clinical need. I will go into the National Institute for Health and Care Excellence’s process at the end of my speech, since it relates to my major request. Others will add their contributions as well.

The dual-pronged burden on patients with rare retinal disease means supporting access to new innovations that can improve the diagnosis, treatment, and care for these conditions. That should be a priority for the Government and their relevant agencies. Sight is the most important sense among adults in the UK, with 88% of people ranking it as their most valuable sense in a recent study published in JAMA Ophthalmology.

According to a report by Deloitte, the estimated total cost of IRDs in the UK is £523.3 million, a massive total, showing the importance of the debate. The total includes wellbeing costs of £196.1 million and total economic costs of £327.2 million, of which productivity costs affecting those of working age are £114.1 million and informal carer costs are £84.5 million. Those statistics support the necessity of the debate and highlight the importance of having a ministerial response on the Government’s stance on the issue.

New innovations that represent a step change in the standard of care for people living with rare retinal diseases are on the horizon, which we have to be prepared for. At the centre of this is a shift toward personalised medicine made possible by recent advances in cell and gene therapies, a transformative class of medicines described by the Minister of State for Science, Research and Innovation, Lord Vallance, as a “new era of cures”. I hope this is where we are going. CGTs are highly specialised types of treatment that aim to treat the root cause of diseases and disorders by augmenting, repairing, replacing, or regenerating organs, tissues, cells, genes, and metabolic processes in the body. Often one-off treatments, they can deliver potential benefits over the course of a patient’s lifetime and therefore represent a step change in how we treat disease. The families, as well as the people who have the retinal disease, are in the middle of that process and experience all the angst that comes with it as well.

Access to new innovations and treatments for rare diseases, termed “orphan medicines”, is a challenge across all healthcare systems. Smaller patient populations along with complex and difficult diagnoses can mean the cost of developing new treatments is higher, compared with treatments for more common diseases, and there can be more uncertainty in the evidence base generated from clinical trials.

In a study on social attitudes to rare diseases, 82% of participants felt that NICE should evaluate the cost-effectiveness of treatments for rare diseases differently from more common diseases, taking into account the additional challenges in developing medicines for rare diseases and, of course, looking at rare diseases overall. It is therefore vital that the regulatory or assessment bodies factor in those considerations when making decisions on whether to approve new treatments or new innovations for rare retinal diseases.

I will now try to develop an argument on one of my other asks. In England, the assessment body for medicine, the National Institute for Health and Care Excellence, has two medicine appraisal pathways: the standard technology appraisal pathway and the highly specialised technology pathway. That is, perhaps, the central core issue of the debate. In Northern Ireland, the Department of Health considers and endorses technology appraisals undertaken by NICE, but, whatever the NICE approvals are here, the Northern Ireland Assembly and the Health Department follow its indications and directive—whatever happens here comes to us. We will be the beneficiaries of NICE recommendations in Northern Ireland, so the debate is really important for me both as the DUP’s health spokesperson and as a Member representing a constituency in Northern Ireland, where health is a devolved matter.

Treatments for very rare diseases have traditionally struggled to get approval from NICE when routed through this standard technology appraisal pathway, which is not designed to factor in the additional uncertainty associated with rare disease treatments; we have a big ask in relation to that, Minister. It is therefore vital that the higher specialised technology appraisal pathway can enable timely patient access to treatments for rare diseases.

NICE is conducting a review of its HST programme criteria for determining what treatments are assessed by the HST pathway. The aims of the review, which are welcome, are to ensure more consistent, predictable and transparent decisions, but there are definitely concerns that the refinements proposed by NICE in its consultation may in fact narrow the number of future treatments eligible for the HST pathway, and, ultimately, risk patient access to future treatments for rare retinal disease. I will have three or four asks at the end, but that will be one of the key ones and it will conflict with the ambitions set out in priority 4 of the Government’s rare diseases action plan 2024 for improved

“access to specialist care, treatment and drugs”.

Of particular concern for retinal disease today are the thresholds being proposed under criteria 1 and 3. Criterion 1 is that the disease is ultra-rare and debilitating, which is defined as having a prevalence above 1 in 50,000 in England. Criterion 2 is that

“no more than 300 people in England are eligible for the technology in its licensed indication”,

and that the technology is not an individualised medicine. Those changes, which tighten the criteria for HST routing, would force more new and innovative treatments for rare retinal disease, as well as other rare diseases, to be assessed via the STA pathway.

To be approved via the STA pathway, treatments are required to meet a significantly lower incremental cost-effectiveness ratio threshold, which is often not possible for many treatments for rare diseases. As a result, innovations might not be approved by NICE for routine use in the NHS, and that is the question I am posing to the Minister.

I am very pleased to see the Minister in her place; she usually has to answer my queries in debates and she always tries to do so. People living with retinal disease, as well as carers and clinicians, all highlight slowing down the progression or, if possible, reversing sight loss as a top priority for future treatments for IRDs. Delays in access to treatment may result in further disease progression and the deterioration of sight. We need solutions to improve diagnosis, treatment and care for people living with rare retinal diseases. To address the concerns on the proposed refinements to the NICE HST criteria, I would like to ask what discussions the Department of Health and Social Care and Ministers have had with NICE on the potential impact of the changes on people living with rare retinal diseases, and on opportunities for appropriate flexibility? Will Ministers, in the absence of any meaningful change to the HST criteria, commit to exploring a potential “third way”—it is always good to have a third way—for technologies that do not meet the criteria for HST and have a low likelihood of positive recommendations under the STA pathway?

On the support for people living with rare retinal diseases more broadly, the Government’s UK rare diseases framework and the corresponding annual action plans have been important in providing co-ordinated action across four areas: helping patients to get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals—perhaps those who are not skilled or do not have the necessary training; making the co-ordination of care better; and improving access to specialist care, treatment and drugs. There are four asks in relation to that.

The momentum of the framework and the action plans must continue to deliver improvements for people living with rare diseases, including rare retinal diseases, which this debate is all about. The current framework is due to come to an end in 2026; what happens afterwards? We hope there will be a clear action plan. I am pleased that the Government have taken the decision to spend £26 billion on the NHS—it shows their commitment to addressing a key issue, which is right, and we all welcome that commitment—but do they plan to publish a new rare diseases framework in 2026? Will they include access to rare disease medicines as a central pillar of the next framework, and keep the issues relating to NICE appraisal of rare disease treatments under ongoing review so that those suffering with the conditions can access effective treatments?

Retina UK, which is celebrating its 50th anniversary, has provided some background to the current situation. I put on the record my thanks to the charity for making that information available; it probably helped all of us who are taking part in the debate. Some 54% of respondents to Retina UK’s 2022 sight loss survey were aware of research into their condition, while 20% had participated in that research and 31% could name the gene causing their condition, which was a significant improvement from 15% in 2019. That is a positive step in the right direction, reflecting better genetic diagnosis and education. However, unmet demand for genetic testing and counselling persists, emphasising the need for increased funding and accessibility.

Something that struck me about rare retinal diseases is that 93% of respondents to the survey reported experiencing anxiety, stress or loss of confidence due to sight loss, but only 16% had accessed mental health support. Some level of anxiety, depression, angst or stress often comes with a very difficult disease, particularly retinal disease. Although resources such as Discover Wellbeing offer tailored psychological support and strategies to improve resilience and quality of life, it is clear that more support needs to be offered. For example, perhaps GP surgeries could be given more information to signpost our constituents—their clients—to greater support, which should be available as they navigate their life journey in a completely different way.

It must be noted that 56% of survey respondents prioritised funding research into treatments, compared with 23% who prioritised providing support services and 21% who prioritised raising societal awareness. Improved genetic testing services and counselling are crucial to enhancing patient care and enabling clinical trial participation. Some 39% of respondents had experienced sight loss-related accidents requiring medical attention, so policies to promote access to mobility aids and rehabilitation services are also urgently needed. [Interruption.] A bell is telling me that my time is coming to an end. I am thankful for that reminder—I am on the last page of my speech.

Continued investment in research, infrastructure and inclusive technology will drive significant improvements in the lives of individuals with IRDs, but that requires commitment from the Minister, the Government and this House to increase funding for research. First, we must support funding initiatives for genetic testing, clinical trials and treatment innovation for rare retinal diseases; secondly, we must promote accessibility and enhance the programmes that provide assistive technologies, mobility aids and accessible information to individuals with sight loss; thirdly, we must expand mental health services; and fourthly, we must advocate for early diagnosis and counselling.

I have made a number of requests, but they are positive requests. I hope that, in the response from the Minister and from my Government, we can find a way forward to help those with retinal diseases. We must seek to deliver in a more effective way, and this debate is the first step towards that.

--- Later in debate ---

[Edward Argar]

In which case, I remain very grateful to the clinicians at the Leicester royal infirmary. The hon. Member will be pleased to know that my wife shares his view about the dangers of gardening, particularly when I am doing it.

As right hon. and hon. Members can see, I am increasingly reliant on my reading glasses and my regular eye tests at Specsavers—other opticians are available. As the hon. Member for Strangford said, that is a reminder of the importance of the issue. A regular eye test not only can detect optical and retinal illnesses earlier, but can potentially spot other more serious conditions that are not directly related to eye health, but of very great significance.

[Jim Shannon]

I had two constituents in Newtownards who came to me complaining of a really sore head and a terrible colour. I said, “Have you been to the doctor?” “Yes,” they said. “Go and see your optician,” I said. On both occasions, they had tumours—one of them was the size of a golf ball; the other was growing. When they got to the A&E at Ulster hospital, they were retained and had emergency operations. With a simple interview and appointment, an optician can diagnose that early on, which can save someone’s eyesight and their life as well.

[Edward Argar]

The hon. Gentleman is absolutely right. He and I have known each other since we came to this House, and he has read my mind, because I was about to say that there are examples of life-threatening tumours being detected through a regular eye test and a referral onwards, which has saved people’s lives. As he set out, an estimated 25,000 or so people in the UK are affected by inherited retinal diseases. As the hon. Member for Leicester South said, the most common, which I will mispronounce, is retinitis—

--- Later in debate ---

[Dame Siobhain McDonagh (in the Chair)]

Order. I will now put—[Interruption.]

[Jim Shannon]

rose—

[Dame Siobhain McDonagh (in the Chair)]

Oh, I am sorry; I nearly denied the hon. Member for Strangford his right to sum up. I apologise. I would never wish to silence him.

[Jim Shannon]

I know we are all anxious to get away, Dame Siobhain. So am I, by the way—I have a plane to catch.

Can I say a big thank you to everyone who took part in the debate? The hon. Member for Leicester South (Shockat Adam) brought up the personal stories of the mum who was expecting and did not realise that she was going to end up with this disease and of the young boy who wanted to be a rugby star when unfortunately that was not going to happen. Those are reminders of what the disease does and I thank him for that. I note that he is an optometrist; I did not know that he did that before he came here, but now I do and I thank him for it. The Minister was right in saying that the talent and information brought to the Chamber has helped us to move forward. The hon. Member for Leicester South also discussed gene therapy and said that the eyes are the window to health. Again, I thank him for that significant contribution.

The hon. Member for Doncaster East and the Isle of Axholme (Lee Pitcher) brought us the personal story of his wife, and what they live with every day. Stories of family members are sometimes forgotten; they are doing something for someone and there is a personal story about how the rest of the family is affected.

The shadow Secretary of State was right that the hon. Member for Torbay (Steve Darling) brings many things to this Chamber outside of health issues. When he speaks there on the front row, we take knowledge; we are always reminded by that wee bell that rings that he is here. We all know. I thank him for that and for his knowledge, which is so important.

The shadow Secretary of State and I have been together in many debates over the years. This subject is important and interesting and he was right to thank the hon. Member for Battersea (Marsha De Cordova). I should have done so; apologies. He is right that she has been a leader and a champion when it comes to eye trauma. By the way, I did not know that the work place most dangerous for the eyes was the garden. That was news to me. I will not talk about my endeavours with a chainsaw; they were scary, although I have survived. The shadow Secretary of State also mentioned regular eye tests, early diagnosis, treatment, research, affordable solutions, the UK rare diseases network and the degree of concern.

I thank the Minister. It may come easy or not so easy, but the hon. Lady always endeavours to give a response on the issues, whether her direct responsibility or not. Today she has done that. She referred to this as a far reaching issue and said that the Government are committed to the rare diseases framework, to faster diagnosis and to the new treatment Luxturna. Right away, she was able to tell us that some people have got that and are feeling the benefit. Those are the pluses that come out of these debates. The Government are committed to research and development and the UK is a leader in genomics. She referred to the treatment pathway and also to ensuring that those with rare retinal disease not being left behind. That is a message we all appreciate. Today the debate has done that, and the Minister has done it well.

[Dame Siobhain McDonagh (in the Chair)]

I apologise again to the hon. Member for Strangford.

Question put and agreed to.

Resolved, 

That this House has considered innovation in the field of rare retinal disease.

Terminally Ill Adults (End of Life) Bill (Money)

Jim Shannon Excerpts

Money resolution
Wednesday 22nd January 2025 Commons Chamber

[Dr Kieran Mullan (Bexhill and Battle) (Con)]

I am conscious of the limited time available and so will keep my remarks focused. I appreciate that it is not commonplace for Front Benchers to speak at length on money resolutions, but this is not commonplace legislation. I reiterate that His Majesty’s loyal Opposition have taken a neutral stance on the merits of the Bill, both in principle and in detail. The House has expressed its support for the introduction of assisted dying, and Members are currently considering the Bill in detail before it is presented back to the whole House for further consideration. The money resolution is a necessary part of associated legislation. Proponents of the Bill will welcome the Government bringing this forward, as it is not unheard of for Governments to withhold these resolutions in a manner that delays the progress of legislation.

[Jim Shannon (Strangford) (DUP)]

There are concerns from those of us who voted against the assisted dying Bill. I understand the process, and how it works with the money resolution coming forward, but on the day that this was finalised I asked a question, and the make-up of the Committee was 15 of those who voted for the Bill, and nine who voted against. A secrecy process has now been brought into the Bill, and we do not know what is happening. That is against the rules of this House. The second thing they have done is the issue of withdrawing the opinion of the judges, which is also out of order.

[Dr Mullan]

I hope that the hon. Member will appreciate that the money resolution is narrow in scope—I will perhaps bring the attention of the House to some tangentially related issues when it comes to the role of the Government in these proceedings.

As I said, proponents of the Bill will be glad of the progress that has been made, but this motion brings into sharp focus the fact that at some point the Government will need to fund, organise and provide assisted dying services to reflect any legislation that receives Royal Assent. As the Minister said, the money resolution will provide the legal basis for funding that service. I recognise that we are not yet at the stage when the Government can say with certainty what exactly those services and their associated funding will look like. There is time still for changes to be made, and we should not of course make an absolute assumption that any Bill will pass all its stages, as likely as that is, given the will of Parliament as expressed to date.

As the Bill proceeds, it will become increasingly important, and helpful to Members voting on future stages, to begin to have some idea of how the civil service and Ministers are envisioning enacting the legislation, not least in relation to the matter of resources before us today. The hon. Member for Spen Valley (Kim Leadbeater) estimated that up to 3% of adults may eventually choose assisted dying. In 2023 there were 577,620 adult deaths in England and Wales. If 3% of those were assisted dying cases, that would result in about 17,000 cases annually. Those are not insignificant numbers, and Members will recognise the considerable existing challenges with resources and personnel in the relevant areas of spending.

Although this is not a Government Bill, the Lord Chancellor has ultimate responsibility for ensuring the effective functioning of our legal system and judiciary, as does the Secretary of State for Health and Social Care for the delivery of this service, and how that will balance and interact with the other health services provided. I therefore have a small number of questions relating to resources, which I hope the Minister agrees will assist the House in better understanding how the Government are approaching such matters.

If information is not forthcoming today, it is crucial that the Minister sets out, in slightly more detail than he did earlier, at what point the Government will engage more fully with the detail of how they intend to resource the Bill, and start sharing their considerations. First, have the Government produced at the very least internal estimates of a potential range of the costs of delivering an assisted dying service, for both the NHS and the judiciary? If they have, will they share that with the House today? If they have not produced internal estimates, when do they anticipate doing so, and when do they intend to publish such estimates?

Secondly, have the Government identified potential sources of funding for the service? If they have, will that funding come from existing departmental budgets, or will it be allocated from outside currently allocated funding? In the latter case, where will those additional resources be drawn from? If the Government have not yet produced options for Ministers to consider on these questions, when will they do so, and when will they share them with the House?

Questions of resources relate to the impact on existing services of any decisions that the money resolution enables. The closer we come to the closing stages of the Bill, particularly ahead of any final parliamentary vote on a settled set of proposals, the more important it will be that Members get the benefit of answers to those questions, which can only come from the Government. It is important to say that it is perfectly legitimate for Members to decide that a better understanding of these issues is not an absolute necessity, and it will be for Members to decide whether they are happy to support legislation purely on principle. That may well be the position for many Members of the House, but I think most would agree that it would be preferable to be able to vote with, at very least, possible approaches and assessments of these matters, even if not definitive answers.

In conclusion, these are not merely procedural or technical issues. The Government’s tabling of this motion signals an acceptance that, should the Bill become law, the financial costs will need to be met, and that will not be a minor area of expenditure. This House has a duty to scrutinise every aspect of the Bill, and I urge the Government to provide a degree of clarity that only they can provide to assist Members in doing that. At this stage there has been a clearly expressed will of Parliament to introduce this service, and it is right for the Government to make legal provision for funding it in principle. However, the Government should enable Members to make decisions at future stages with as good an understanding as possible of how the legislation they may wish to support will translate into the real world.

--- Later in debate ---

[The Minister for Care (Stephen Kinnock)]

I thank Members for their continued contribution to the debate. The Government are of the view that the Bill is an issue of conscience for individual parliamentarians and it is rightly a matter for Parliament, not the Government, to decide. The money resolution allows the Bill to be debated in Committee, where its detail will continue to be scrutinised. As I have said, the Government will also be assessing the impact of the Bill and we expect to publish an impact assessment before MPs consider the Bill on Report. I therefore commend the money resolution to the House.

Question put and agreed to.

[Jim Shannon (Strangford) (DUP)]

On a point of order, Madam Deputy Speaker. The right hon. Member for North West Hampshire (Kit Malthouse) made a comment that I feel impinged upon my integrity. I have spoken to the right hon. Gentleman and he knows what I am referring to. I underlined and highlighted that the Terminally Ill Adults (End of Life) Bill Committee went into private session; some 15 Members, who support the Bill, voted for the private session and nine Members, who oppose the Bill, voted against the private session. The record must be corrected about what the right hon. Gentleman said about the comments I made about that. Facts are facts; they matter to me, as does my integrity.

[Madam Deputy Speaker (Ms Nusrat Ghani)]

Thank you, Mr Shannon, for letting me know you would be making a point of order. The Chair is not responsible for the content of Member’s speeches, but I remind the House of the advice in Erskine May on the importance of good temper and moderation in parliamentary language.

Auditory Verbal Therapy

Jim Shannon Excerpts

Tuesday 21st January 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

Thank you very much, Mr Western. I wish you well in your new role as Chair for Westminster Hall debates. I hope there will be many occasions on which you will call me to speak, although maybe not always first. It is a pleasure to see you in the Chair.

It is also a pleasure to see the Minister in his place, and I look forward to his response. I look forward to the contribution of the shadow Minister, who has a deep interest in health issues. I give special thanks to the hon. Member for Washington and Gateshead South (Mrs Hodgson) for bringing this important topic to Westminster Hall for debate, and for her compassionate introduction. She has a deep interest in the subject matter and in making lives better, which is of course why we are all here.

This issue affects children throughout this great United Kingdom of Great Britain and Northern Ireland. The information sent across by Auditory Verbal UK is a challenging read. It states:

“Deaf children in the UK currently face a lifetime of disadvantage without access to early and effective support to develop language and communication and less than 10% of deaf children who could benefit from Auditory Verbal therapy to learn to listen and talk can currently access it.”

That is the key issue and our key ask. This debate gives us the opportunity to raise awareness and make help available for all the deaf children who need support across this United Kingdom of Great Britain and Northern Ireland.

The fact that 90% of children who could benefit from this therapy to improve their lives, including their social, educational and future working lives—I suspect the Government are planning for children with deafness not just for today, but for their future engagement in working life—cannot access such help does not sit well with me or anybody else here. I know the Minister feels the same angst about the issue, which is why I very much look forward to his response to our requests.

It is clear that more must be done to facilitate access to auditory verbal therapy, which is why I am happy to support the hon. Member for Washington and Gateshead South and speak on behalf of the deaf children in my area and throughout Northern Ireland. The Consortium for Research in Deaf Education found that there were at least 1,428 deaf children in Northern Ireland. Some 77% of deaf school-age children attended mainstream schools, 1% attended mainstream schools with resource provisions—which there should be—and 21% attended special needs schools not specifically for deaf children.

This is a devolved matter, so the Minister does not have any responsibility for that, but those figures reflect what happens in the United Kingdom mainland. Some 36% of deaf children were recorded as having another additional special educational need; that has increased from 27% in 2021. The stats do not make good reading because they illustrate the shortfall and where there is need. My staff and my office have been in touch with the Department back home to chase up the matter.

An issue raised by the research was that the number of qualified teachers of the deaf in employment and working in a peripatetic role, in resource provision and/or in a special school or college not specifically for deaf children has decreased by 7% since 2022—just in the last two years—and by 40% since the survey started in 2011. There is a real need to train people to help to give young deaf children the opportunity to do better and get ready for employment in the future. I am keen to hear the Minister’s thoughts; perhaps there will be a role for an Education Minister in that work as well.

It is clear that there is a real need to focus on how we support these children, and that there is much more to be done. I suppose that is the ultimate reason for the debate. Some 80% of children who attend an auditory verbal therapy programme for at least two years achieve the same level of spoken language as their hearing peers—wow: that is why we need this; those are the results—rising to 97% of children without additional needs. They attain educational outcomes on a par with hearing children, and the majority attend mainstream schools. That truly speaks for itself.

With an investment of just over £2 million per year over the next 10 years, the Government could transform the landscape of auditory verbal provision and unlock £152 million of economic benefit. On the returns on investment, it is said that we have to speculate to accumulate; in reality, we have to spend time and money on the children to ensure that the economic benefit for all of us, but especially for them, rises to £11.7 billion within the next 50 years. We need to spend that money early and get the returns and, more importantly help people to prepare for life.

We must ensure that UK children have access to this most basic of support and that we give them the lifelong tools that are beneficial for them and for society as a whole. We are long past the days of believing that being born with a different ability means a different life; there are just too many success stories for us to believe that that is a death sentence for normality. I seek in this debate to ensure that young deaf children have the same opportunities as other young children. If we can manage that, I will be very pleased.

We know that a full life can be achieved, but the groundwork must be done in this place with sustained UK funding for auditory verbal therapy. I look forward to the Minister outlining how and when we can expect more for those who need it most. Has he had the opportunity, in the short time he has had, to make contact with the Health Minister in Northern Ireland and other responsible Ministers to see how we can exchange ideas, do it better together and raise awareness, which is very important?