Type 1 Diabetes and Disordered Eating Services

Jim Shannon Excerpts

Wednesday 5th March 2025 Commons Chamber

[Josh Newbury (Cannock Chase) (Lab)]

It is a privilege to have secured a debate on a chronic but often misunderstood condition that affects many people across our country: the correlation between type 1 diabetes and disordered eating, known as “T1DE” for short. Separately, those two conditions are well-known and well documented, but together they exacerbate one another and can, in extreme cases, become a life sentence.

On an individual level, type 1 diabetes is a chronic autoimmune condition characterised by the pancreas being unable to produce insulin, meaning that those with the condition are required to carefully monitor their blood glucose levels and administer insulin. As we know, that delicate balance demands constant attention. Many of us have the luxury of going out for dinner and choosing a meal based on what we like the sound of—shamefully, in my case, often with too little thought to the sugar content, calories or how the body will digest it. For those with type 1 diabetes, however, that blissful ignorance simply is not an option. For them, life revolves around counting carbohydrates, monitoring blood sugar levels and injecting insulin. It is relentless. To put that into numbers, a child diagnosed with type 1 diabetes at the age of five faces up to 19,000 injections and 50,000 finger-prick blood tests by the time they are 18. Every moment of every day is a balancing act between food, activity and insulin.

[Jim Shannon (Strangford) (DUP)]

I commend the hon. Gentleman for securing the debate. I spoke to him outside the Chamber and he knows exactly what I am going to say. I have been a type 2 diabetic for almost 20 years, and I understand very well the fact that monitoring food intake is part and parcel of daily life. For those who suffer from an eating disorder, the constant food noise needs to be addressed by a professional, but diabetic clinics do not have the resources to deal with that. Does he agree that we need mental health support links for diabetics throughout the United Kingdom?

[Josh Newbury]

It is a pleasure to take my first intervention from the hon. Gentleman. I pay tribute to him for his campaigning on this issue and the personal experience that he brings to the House. I will come later in my speech to my experience of mental health services. I absolutely agree that we need to ensure that people with type 1 and type 2 diabetes have all the support they need for their mental health and managing their condition.

For some, type 1 diabetes morphs into a the deeper challenge of disordered eating—it is not difficult to see how that can happen. Given the strict attention to diet and nutritional information that type 1 diabetes necessitates, unhealthily restrictive and avoidant approaches to food can sometimes, at least to begin with, be indistinguishable from healthy diabetes management. As we know, in some cases, one side effect of insulin-based treatment can be weight gain. That leads some people with type 1 diabetes to realise that by restricting their insulin intake, or even stopping it altogether, they can essentially eat what they like and lose weight. However, the medical consequences of that are stark, including kidney problems, bone wastage, amputations, blindness and even death.

One of the most insidious aspects of T1DE is how difficult it can be to identify until its devastating consequences for both physical and mental health begin to manifest themselves. People suffering with T1DE often say that the isolation that comes with trying to navigate both a chronic illness and disordered eating is unimaginable for anyone who has not experienced it.

--- Later in debate ---

[Ashley Dalton]

I am more than happy to meet the APPG to discuss those matters.

I was really moved to read Lynsey’s story on the Diabetes UK website. One thing that really stood out to me was her experience of turning 18 and moving to an adult clinic. She said:

“I became a number in a system, rather than a patient. Every time I went, I saw a different team, and would have to explain my entire medical history. It felt like it wasn’t worth my time, and I certainly wasn’t going to have a conversation about what was going on with people I didn’t know.”

After just a few appointments, Lynsey stopped going. T1DE cuts across diabetes and mental healthcare, and Lynsey’s interactions with the NHS show that we must never treat patients like interchangeable statistics, bouncing around a cold system that does not seem to care for them. Instead, each patient should benefit from a unique, joined-up approach.

To its credit, NHS England has recognised that there is an unmet need for better treatment of T1DE. As my hon. Friend the Member for Cannock Chase has recognised, it has begun piloting type 1 diabetes and disordered eating services, two of which came online in 2019. The aim of those pilots was to develop the evidence base around how best to manage T1DE by testing an integrated pathway, which means that patients such as Lynsey would not be obliged to recount their medical history on every visit. In the past five years, NHS England has expanded on the original pilots, with funding extended for five T1DE pilot sites until March 2026 to ensure that there are sufficient patient numbers for us to get a full picture of what is happening on the ground. I thank my hon. Friend for his contribution to those pilots.

While those pilots are gathering evidence, NHS England is looking carefully at the findings, with a view to developing a future national strategy. Each of the five new pilot areas is submitting quarterly data to the evaluation, and it intends to publish its analysis of the data by September.

[Jim Shannon]

I thank the Minister for her comprehensive and helpful response. I first came to this House in 2010, and in 2015 a diabetes plan for the whole of the United Kingdom came out of Westminster for all the regions together, but that came to an end. I had always asked and hoped for that plan to come together again. Will she consider having a diabetes plan for all of the United Kingdom of Great Britain and Northern Ireland working together, because I understand that in Northern Ireland we have the highest number of type 1 diabetics anywhere in the United Kingdom?

[Ashley Dalton]

As I am sure the hon. Member knows, health is obviously a devolved matter. However, I am more than happy to look at the issues he has raised and come back to him.

The data from the pilot areas will also be shared with all the integrated care boards, so that we can build up the case for more investment in T1DE from ICB budgets while looking at ways in which NHS England can support ICBs in commissioning their services.

While those pilot sites are doing critical work, the NHS is supporting people with diabetes to live well. Central to that is making sure that patients have access to annual reviews that cover eight processes recommended by the National Institute for Health and Care Excellence. We know that people who attend annual diabetes reviews have much better outcomes for emergency hospital admissions, amputations, retinopathy and mortality. That is why it is right that the NHS is investing £14.5 million over the next two years, supporting up to 140,000 people between the ages of 18 and 39 to receive additional tailored health checks by healthcare staff. That support will include vital support to break down any stigma associated with diabetes while helping those people to manage their condition, from blood sugar level control and weight management to minimising the risk of heart disease.

As has been touched on, technology plays a critical role in helping people with diabetes to live healthier lives, and there is great potential to do the same for people with T1DE. NICE has made positive recommendations on offering real-time continuous glucose monitoring and hybrid closed loop technology to adults and children with type 1 and type 2 diabetes, meaning that those treatments are now offered on the NHS. Over two thirds of people with type 1 diabetes currently use glucose monitoring to help manage their condition, and following NICE’s recommendations on hybrid closed loop systems, NHS England has developed a five-year national strategy that began in April last year. I know that five years will seem like a long time to many of those young people struggling with this condition here and now, but the NHS does need an implementation period to ensure we have all the right people with the right skills within specialist adult services. We cannot compromise an inch on safety, and NHS trusts should only ever provide hybrid closed loop if specialist trained clinical staff, experienced in using insulin pumps and continuous glucose monitors, are in place.

Women’s Health

Jim Shannon Excerpts

Thursday 27th February 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairship, Dr Huq. I thank the hon. Member for Hastings and Rye (Helena Dollimore) for leading the debate and setting the scene incredibly well. I welcome the Minister to her place. I think this might be her first official engagement as Minister. If it is, I wish her well in her new role. I welcome the Conservative and Liberal Democrat spokespeople. The hon. Member for Hinckley and Bosworth (Dr Evans) and I seem to spend every Thursday afternoon at about this time in these debates. It is a pleasure to be here.

I am my party’s health spokesperson, so finding solutions and discussing these issues are of major importance to me. It is important to get the full perspective, so I will give some facts and figures about Northern Ireland, which will echo what the hon. Member for Hastings and Rye said.

Many will be aware that health is a devolved issue. That does not mean, of course, that our central Government allow the devolved Administrations to be left behind. The Department of Health back home launched a women’s health survey in late 2024. The hon. Lady referred to a similar survey. The Northern Ireland survey, which closed on 31 January 2025, focused on women’s healthcare needs and experiences to help shape planning for women’s health services. Almost 80% of respondents to a separate women’s health survey undertaken by the Community Foundation Northern Ireland said that they felt unheard by healthcare professionals, and more than 30% reported that necessary services were inaccessible or very inaccessible, so we have real problems back home.

I have worked closely alongside many charities raising awareness of endometriosis and polycystic ovary syndrome care, and the challenges that women in Northern Ireland face in relation to gaining access to treatment. Endometriosis UK revealed in 2023 that there was an average diagnostic delay of nine years and five months—an increase on the eight-year delay reported in 2010—so we really have significant issues in the Province.

As of 2021, Northern Ireland had only one endometriosis specialist surgeon, and some 324 women were waiting a long time, in pain, for surgery. I ask the Minister whether it would be possible for her to have some discussions with the relevant Minister in the Northern Ireland Assembly to see how we can address these things together.

I want to speak very quickly about the menopause. The hon. Member for Neath and Swansea East (Carolyn Harris), who is not here—she is in the main Chamber speaking on St David’s day—is a real champion on this issue. If she were here today, she would be adding to this debate. In my office, I employ six women of different ages, and I have always tried to make an effort to be understanding to ensure they are comfortable in the workplace. For menopause, there are adjustments that can be made in the workplace to support women, and I encourage employers to be mindful of that, especially in more male-dominated fields, where women can feel more isolated. Women are playing their part in places where men used to have all the jobs, such as engineering. It is time that employers grasped that and came up with something to help those ladies.

I have mentioned some of the issues, but there are many, many more. As the hon. Member for Hastings and Rye said, we in this place can do more as legislators to support more research into and funding for women’s healthcare. We need to do more to ensure women can access what they need. I look forward to working closely with the responsible agencies and our respective Governments to see what more can be done. I thank the hon. Lady again for bringing forward this debate, and I look forward to contributions from many others who will add to it. I am here to help us do the best we can, and to bring a Northern Ireland perspective, because we are badly lagging behind. We need to step up and do more.

Maternity Services

Jim Shannon Excerpts

Tuesday 25th February 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairmanship, Sir Christopher. I commend the hon. Member for Chichester (Jess Brown-Fuller) for setting the scene so well. I thank her for sharing her personal stories; nothing sets out an issue better than a personal story. I am my party’s health spokesperson, but it is always good to give a local perspective too. I look forward to the responses from the Minister and Opposition spokespersons—the trio here today seem to be in all the debates on this subject, and I thank them for their contributions.

Our maternity services in Northern Ireland are crucial and, arguably, among the most consistent services offered by the NHS. Although all our services are important, everyone must be born and must be given the best start in life, and it is through our wonderful NHS maternity services that we are able to succeed.

My constituency resides within the South Eastern health and social care trust, which offers both midwifery-led and consultant-led care, with a fantastic focus on personalised support for mothers through their pregnancy and after labour. The trust also provides antenatal clinics, home visits and care options for expecting mothers.

Back home in Northern Ireland, in October 2024, an independent review concluded that a co-ordinated system-wide change is needed to radically improve maternity care. There are problems with maternity care not just here on the mainland, but with us back home. The Minister does not have a responsibility for that, but she has an interest in all things pertinent to Northern Ireland. Whatever the subject matter, and whenever I ask her for help, as I always do, she always responds in a positive fashion, and I appreciate that.

There are clear inequalities in services across Northern Ireland. It is no secret that the health service has witnessed extreme difficulties over the last couple of decades. More must be done to support staff and to ensure safe and quality care, so that women and families feel supported through their journeys during pregnancy and labour.

One of my constituents gave birth to her first baby just last week, and I want to record what she said, because I think that that is important. Her experience was made by the incredible student midwives who supported her and held her hand the entire way. When my three boys were born—that was not yesterday—I was there with my wife. She held my hand, and the blood circulation in my hand got less and less as my dear, loving wife’s pain increased. I say that because we have to give some credit to the student midwives who are there for what they do.

The Department of Health and Social Care has increased the number of commissioned pre-registration nursing and midwifery university places from 680 in 2013 to 1,335 in 2023. Those are good figures, but unfortunately, due to budgetary constraints, the number of places returned to the baseline of 1,025 in 2023-24. So there was an increase sometime back, but the numbers have levelled out again.

Thousands of people across Northern Ireland apply to study nursing and midwifery each year. The number of midwifery training places is extremely limited, and demand often exceeds the number of available spots. The Royal College of Midwives has noticed a downward trend in midwifery applicants and has stated that that is a concern, expressing apprehension about the significant drop in the number of applicants. For the record, has the Minister had an opportunity—she probably has—to get the opinion of the Royal College of Midwives on where we are and how we could help?

We must look at why this is happening. It could be said that, because midwifery is a challenging field to get into, many do not see the point in applying directly for it. Again, what are the Minister’s thoughts on how we improve things? Additionally, some have stated that it is easier to progress in a career by going in at entry level, as opposed to starting university after school and trying to get a job after.

There must be ambitious reform of these services to ensure that we can support expectant mothers and give them memorable and positive experiences. We often hear of horror stories, and we must allow for the best start in life for babies and families.

To conclude, we have some of the best staff in our maternity wards, and their work and dedication must be recognised. They are hammered day and daily in their jobs, due to budgetary constraints and the inability to get the support they need. I look to the Minister and the Government to give a commitment to our NHS—and, more importantly, to those who work in it—that more will be done to properly fund our wonderful maternity services across the whole of this United Kingdom of Great Britain and Northern Ireland and to give families and parents the best possible start to their children’s lives. I request that the Minister have discussions with the relevant Minister in Northern Ireland, Mike Nesbitt, on what we are doing back home, so that we can work better together.

Cardiovascular Disease: Prevention

Jim Shannon Excerpts

Thursday 13th February 2025 Westminster Hall

[David Mundell (in the Chair)]

Demonstrating my own multifunctionality, I am now going to chair but not participate in the next debate.

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered the prevention of cardiovascular disease.

I do not know where my functionality comes into it, Mr Mundell, but we are doing two debates in a row and it is lovely to serve under your chairship. As I explained in the last debate, I am my party’s health spokesperson. I have a lot of interest in this subject; I also declare an interest as chair of the all-party parliamentary group on respiratory health. Cardiovascular disease is one of the things that the group focuses on.

Back in 2019, the NHS long-term plan defined cardiovascular disease as the single biggest area where the NHS can save lives over the next 10 years. Six years on, that statement still rings true, but I am not sure whether we any closer to arriving at a conclusion. Over 7.6 million people are living with heart and circulatory diseases in the United Kingdom, and CVD is responsible for a quarter of all deaths here every year. It is one of the biggest killers.

I am very pleased to see the hon. Members here, and I thank them for coming. The Parliamentary Private Secretary, the hon. Member for Glasgow South West (Dr Ahmed), is here for the Minister, and I look forward to the Minister’s contribution. I am pleased to see the shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans); he and I seem to regularly share debates. I am also pleased to see the Liberal Democrat spokesperson, the hon. Member for Mid Sussex (Alison Bennett).

According to predictions from the British Heart Foundation, by 2030 the prevalence of heart and circulatory conditions in the United Kingdom will have increased by 1 million. By 2040, it will rise by 2 million, due to a growing elderly population, the high prevalence of CVD risk factors and improved survival from major CVD events. Cardiovascular disease care in the United Kingdom is most certainly at a critical juncture. That was starkly illustrated by Lord Darzi’s recent independent investigation into the state of the NHS; I know that we are all aware of some of the key points of that. The investigation set out how nearly 50 years of progress to improve CVD outcomes has begun to reverse in recent years. That must not happen.

I seek reassurance from the Minister that we are out to stop that reversal. The number of people dying before the age of 75 with CVD has risen to its highest level since 2010, while the association between poor CVD outcomes and health inequalities has also increased, with people living in the most deprived parts of the country being twice as likely to die from CVD as those in the least deprived. Something is seriously wrong when those who just happen to live in a deprived area have a bigger risk of dying than those who do not. The slowing of progress is creating an enormous cost for the NHS and society as a whole, including £12 billion in total healthcare costs and £28 billion across the wider economy due to premature death, long-term care, disability and other informal costs.

A key challenge relates to the high prevalence of CVD risk factors such as high blood pressure, obesity, diabetes, limited physical activity, air pollution and smoking. I declare an interest as I have had type 2 diabetes for almost 20 years. Mine is controlled by medication and I thank God for that, but I understand the impact on others much worse off than I am.

Raised cholesterol is another significant risk factor, associated with one in five deaths from CVD. Just over half of all UK adults are living with raised cholesterol, significantly increasing their risk of heart attack and stroke. However, due to the lack of immediately obvious symptoms, high cholesterol levels often go undetected. There are concerns that without immediate action there could be a further tidal wave of CVD deaths due to the thousands of “missing patients” living with undetected and unmanaged heart and circulatory conditions.

There are similar challenges in Northern Ireland. I always give a Northern Ireland perspective, which I think replicates what happens here on the mainland; that is why I do it. An estimated 225,000 people are living with heart and circulatory diseases in Northern Ireland—remember that we have a population of 1.9 million; that gives you an idea of the proportions. Since the 1960s, significant progress has been made, with CVD death rates falling by three quarters. But that improvement has plateaued in recent years: some 4,227 people died from CVD in Northern Ireland last year, including 1,133 people under age 75. It is not just an elderly person’s disease. That has to be put on the record.

Annual NHS expenditure on CVD in Northern Ireland is some £290 million—a colossal amount—and CVD’s overall cost to the Northern Ireland economy equates to some £740 million each year. Those are massive figures. I know that we should not look at health from a purely financial point of view, but those figures tell us that if we were working better to combat CVD the impact on the economy and health service would be greatly reduced. Northern Ireland faces similar problems when it comes to identification and management of CVD risk factors, with around 400,000 people living with high blood pressure, including 110,000 who are undiagnosed. Some 45% of adults in Northern Ireland are not performing enough daily physical activity.

In my constituency of Strangford, the prevalence of hypertension, coronary heart disease and stroke is significantly higher than in the rest of Northern Ireland. The reason for that could well be that our population is elderly: people tend to retire to my constituency. Despite the dire figures, there are real opportunities, both in Northern Ireland and the United Kingdom as a whole, to reverse the trends and help the UK become a world leader in CVD, as at one stage it was clearly trying to do. To get there, however, we clearly have to start doing things rather differently. Recent years have seen a number of policy commitments from successive Governments, but those have not shifted the needle, focus or direction. Today’s debate is about highlighting that and seeking help to address the situation.

There was the NHS long-term plan of 2019, which set out ambitions to prevent 150,000 heart attacks, strokes and dementia cases over the following 10 years. Unfortunately, in my constituency and elsewhere there are high levels of dementia cases, strokes and heart attacks. In Northern Ireland the figures are unfortunately incredibly high.

Successive versions of the NHS annual planning guidance have encouraged local systems to prioritise CVD and address the significant inequalities associated with it. Although the previous Government’s major conditions strategy was not fully implemented, it set out a series of robust principles to improve CVD care, including personalised prevention, early diagnosis, effective management of multiple conditions, integration of physical and mental health services, and services tailored to individual needs. The previous Government’s strategy was clear. I think this Government’s strategy is equally clear, but we need to address some of the issues that I will come to as I go through my speech.

We are lacking a deeply embedded, system-wide approach to CVD prevention that moves care upstream, is backed by sustainable, long-term funding and deploys the latest technologies and innovations. The National Audit Office’s recent report, “Progress in preventing cardiovascular disease”, provided stark evidence that such an approach has been lacking. It focused on the delivery of the NHS health check, which is one of our main tools for enabling early intervention on heart disease. It concluded:

“there is currently no effective system for commissioning Health Checks, despite it being a statutory responsibility on local authorities. DHSC and local government have weak levers to encourage primary care or other services to deliver Health Checks.”

That will be one of my asks of the Minister, who I am pleased to see in his place. I wish him well, and I know I will not be disappointed by his response to our requests.

In 2023-24, only half of the eligible population attended a health check, and only 3% of local authorities covered their entire eligible populations. We have to change that, so my request is that local authorities, which have statutory responsibility, primary care and other services that deliver health checks increase the number of people who get checked.

We need an action plan. The NAO report said:

“This is not a satisfactory basis for delivering an important and potentially life-saving and money-saving contribution to population health.”

Major improvements are needed, and the Government must embed them in a policy environment that promotes prevention rather than treatment. I have always been a believer in prevention rather than treatment. We must diagnose early and prevent disease at an early stage to stop the whole thing going further.

The current approaches do not sufficiently take account of genetics and the role of inherited familial conditions such as familial hypercholesterolaemia and cardiomyopathy in increasing CVD risk. Children are not routinely screened, GPs often fail to take account of people’s family history, and many patients report difficulties in accessing genetic screening.

Patients and doctors need to be empowered to access genetic testing, secure diagnosis and take preventive measures, which will ensure better health for the future and save money in the NHS. I am pleased that the Government have committed an extra £26 billion to the NHS, because right across this great United Kingdom of Great Britain and Northern Ireland, we will all benefit from that.

Up to 80% of premature deaths from CVD are preventable—we cannot ignore that figure. Preventing those deaths must be our goal, so the importance of this issue cannot be overstated. The evidence shows that CVD prevention pays. Analysis from HEART UK estimates that merely improving the management of cholesterol, triglycerides and other lipids through increased uptake of NHS health checks and, by extension, increasing the number of patients on lipid-lowering therapies, could deliver more than £2 billion in annual savings for the NHS and wider society.

I will focus on lipid-lowering therapies, because that is a solution that I am keen to see the Government take on board. Although prevention spending is often deprioritised in favour of meeting short-term measures, that is the kind of investment that we need if we are to deliver on the Government’s pledge to shift from sickness to prevention. I welcome the Government’s commitment to do that; that is what my party and I want.

In recent discussions I have had with stakeholders on this area, they have agreed a number of key themes that will be crucial to delivering progress on CVD prevention. Those include securing dedicated and ringfenced funding for CVD prevention, to enable targeted prioritisation of preventive approaches; identifying at-risk patients through early detection and risk assessment strategies, including testing from birth and family cascade testing; developing comprehensive public awareness campaigns that empower patients to self-monitor—if we can have patients’ participation in this as we go forward, that will be much welcomed; increasing access to prevention services by moving them closer to home, including by delivering more community-based diagnostic services; and ensuring timely implementation and consistent application of evidence-based clinical guidelines.

There is growing recognition of the potentially transformative opportunity that can be realised through wider awareness and recognition of another key CVD risk factor: lipoprotein(a), or Lp(a), which is a large lipoprotein made by the liver. Lipoproteins are parcels made of fat and protein. Their job is to carry fats around the body in the blood. Elevated levels of Lp(a) in the blood are an independent, inherited and causal risk factor for CVD, due to its pro-atherogenic, pro-inflammatory and pro-thrombotic effects.

One in five people are estimated to have raised levels of Lp(a) in their blood. That equates to some 13,400,000 people in the United Kingdom—equivalent to filling every seat in Wembley stadium about 150 times. Lp(a) is associated with an increased risk of several life-threatening events and conditions, such as myocardial infarction, heart attack, stroke, coronary artery disease, peripheral arterial disease and heart failure. Sadly, those events are often premature, so we need a way of diagnosing, doing early prevention and doing things better. My ultimate request to the Minister will be that that happens.

In severe cases, which applies to about 12% of the population, raised Lp(a) contributes to a two to four times higher risk of heart attack, stroke and heart disease. The prevalence of raised Lp(a) is typically greater among African and south Asian populations—a trend that is likely exacerbating existing health inequalities even further.

Despite the huge numbers at risk, few people know that they have a raised level of Lp(a). If they did, preventive measures might be taken: they could get a diagnosis, and we could ensure that their lives were better and longer, as well as reducing the cost to the NHS. The awareness of the role of Lp(a) in contributing to CVD risk is low among the general public and healthcare professionals, so there is a need to raise awareness. With that significant burden comes a huge opportunity to improve outcomes for a so far largely untreated and unserved patient population.

I want to mention my constituent, Dr Paul Hamilton, and also Gary Roulston. They are consultant chemical pathologists at Queen’s University Belfast and Belfast health and social care trust. They are leading pioneering work to proactively measure Lp(a) levels in patients who are at risk of CVD. I am always amazed—I always like to say this about Queen’s University, and it is right to do so—that when it comes to research and development, it is at the forefront, including on Lp(a). I encourage the Minister to interact with Queen’s University. The recent audit of its testing programme has revealed that early measuring of Lp(a) levels leads to a change in CVD management for a large number of patients. That demonstrates that Lp(a) testing and management can be implemented to improve population health and reduce the risk of CVD.

When we look at those things, we see something that can be done even better. Although there are currently no specific therapies for lowering Lp(a) levels, the taskforce believes that there is a clear and growing case for taking action now to incorporate Lp(a) testing and management within mainstream CVD prevention strategies. Several new therapies to lower Lp(a) are currently undergoing late-stage clinical trials, and could well be available in the near future, pending the outcome of those trials. That is a really exciting way forward, and an exciting way to save and improve lives. It is therefore vital that steps are taken to enable system readiness for those therapies and to ensure that the NHS is in the best possible position to maximise their anticipated benefits.

In the interim, there is a growing clinical consensus about the value of identifying patients with elevated Lp(a). In particular, knowing an individual’s Lp(a) can inform more intensive management of other cardiovascular risk factors, including blood pressure, lipids and glucose, and empower people to make a lifestyle change to reduce their overall CVD risk. It can also support cascade screening of family and close relatives—again, a positive way forward —given the genetic status of Lp(a). There is clearly a way to use technology and innovation to test more and to do more good for people. Tangible progress in that area could play a key role in supporting many of the key principles that have been identified as crucial to guaranteeing the future sustainability of the NHS, such as reducing pressure in the acute sector, delivering more personalised care and precision medicine, and capitalising on the pioneering innovation led by the UK’s life science sector.

More broadly, Lp(a) testing can support the Government’s ambitions right here in Westminster to get people back into work, by reducing the incidence of major CVD events, which can prevent people from participating in the labour market. Diagnosis and prevention can support people. To be fair, most people want to work; they want to have a normal life. The ones I speak to are not seeking benefits for any reason other than that they are unable to work.

Without formal recognition of Lp(a) in national policy, the only Lp(a) testing that takes place will be reliant on the work of proactive local clinicians. We need to make it the norm; we need to make it acceptable and the way forward. The regional variations are also not acceptable, and local systems need clear direction from the centre to encourage them to start thinking proactively about how Lp(a) testing and management could be incorporated into their local CVD prevention pathways.

What are we seeking? We are looking for a review of current CVD prevention and treatment pathways, for an assessment of where Lp(a) testing could be incorporated to deliver tangible benefits now—not later, but now—and to maximise the benefits of therapies that lower Lp(a), when those become available. We are also looking for engagement with local specialist lipid clinics and clinical laboratories to assess current levels of Lp(a) testing and whether it aligns with agreed best practice and to consider what will be needed to upscale activity in the coming years. We want to encourage local CVD champions to start thinking about the role of Lp(a) in contributing to CVD risk and to disseminate information about Lp(a) within their local networks.

In the taskforce’s call to action, it identified several system barriers that are holding back progress in this area; these are also applicable to the success of other health prevention strategies. They include National Institute for Health and Care Excellence procedures and methodology. NICE’s guideline methodology needs to take account of wider evidence criteria beyond the ones that apply to a specific treatment. In the case of Lp(a), although specific therapies to lower Lp(a) are not currently available, the taskforce believes that there is none the less a strong case for taking action now to proactively incorporate recommendations on Lp(a) testing and management in NICE guidance. If replicated across other disease areas, that more proactive and anticipatory approach from NICE would help to improve NHS system readiness for new innovations and treatments, encourage healthcare professionals to think more proactively about how a specific risk factor may be contributing to overall risk, and embed a more preventive mindset across the health system, reflecting the significant role of NICE in driving clinical behaviour. If it is possible to make those improvements—it is cost-effective, and early diagnosis will make things preventable—we really need to look at that.

Barriers also include the accuracy of health risk assessments. Risk assessment tools, particularly in CVD, play a crucial role in supporting health prevention strategies. An accurate assessment of an individual’s risk of experiencing a major CVD event can inform the most appropriate action to proactively manage and reduce that risk through a combination of treatment interventions and lifestyle changes—each of, us individually, has to play a part.

Going forward, it is vital that existing CVD risk assessment tools are updated to take account of Lp(a) and its known association with a range of life-threatening or life-changing cardiovascular events and conditions. That recognition will be essential to delivering a truly holistic assessment of an individual’s cardiovascular risk profile.

It is important to look at the standardisation of testing and reporting. The success of health prevention strategies also depends on the accuracy and consistency of diagnostic processes. In the case of Lp(a), testing should be conducted according to the best practice principles set out by HEART UK. Has the Minister had a chance to talk to HEART UK, which has some great ideas and positive ways forward? It is important to work in partnership to deliver therapies, diagnoses and prevention.

On emerging therapies, in particular, it is vital that there is a focus on encouraging greater diagnostic standardisation from the outset. Clinicians often get used to the numbers they first use, and it is important that they do not become entrenched in using the wrong, or indeed superseded, units. Without action in these areas, Lp(a) testing and management risks becoming another promising area of health innovation where the UK falls behind comparative systems.

We need to look further afield and to work with other countries; I met the shadow Minister, the hon. Member for Hinckley and Bosworth, this morning and said the same thing to him. Prominent European and American guidelines, such as those from the American Heart Association, the National Lipid Association and the European Atherosclerosis Society, have set out the importance of considering Lp(a) screening as part of CVD prevention approaches. Some countries are even thinking practically about how universal Lp(a) screening could be introduced. The present approach therefore puts us at risk of missing a rare opportunity to save lives that may be cut short by CVD, and will be increasingly out of line with the Government’s focus on transforming prevention across the NHS.

The Lp(a) taskforce is a coalition of experts from across the cardiovascular, lipid and laboratory community, with members from all four nations of the United Kingdom. They have come together to help tackle the lack of awareness and to set out the value of testing for Lp(a) in routine clinical practice to improve CVD management. Chaired by HEART UK, the group published its calls for action in August 2023, and it has since been working with key stakeholders to set out the potentially transformative role that Lp(a) could play in the future and, more broadly, to help renew the UK’s status as a world leader. We can be the world leader in CVD prevention and care.

I have some questions for the Minister. Is there a willingness to meet me and representatives from the Lp(a) taskforce, as well as other Members here with an interest in the subject, to discuss the essential steps that need to be taken to ensure that the UK is in the best possible position to integrate Lp(a) testing and management as a core part of CVD prevention strategies? Further, will he commit to engaging with key system partners such as NICE, NHS England and the devolved Administrations to address policy barriers that could hold back progress? I am ever mindful that the Lp(a) taskforce already comprises the four nations of the United Kingdom.

The Government must take wider action through their forthcoming 10-year health plan to secure renewed focus on CVD prevention, underpinned by ringfenced funding, enhanced early detection, expanding community diagnostic capacity, the timely implementation of evidence-based guidelines, and comprehensive public awareness and patient empowerment programmes. Will the Minister explore the scope to develop a dedicated national strategy for cardiovascular disease? We had that in 2019; I believe we need it in 2025.

Reversing these worrying trends in CVD is one of the great healthcare challenges that we face in this Parliament, and it must be approached with the necessary focus and attention. The UK must be able to capitalise on new and emerging areas such as Lp(a), which will be crucial if it is to renew its status as a world leader in CVD prevention and care. Just as with cancer, one in two people in this Chamber today are likely to develop heart and circulatory conditions in their lifetime. Just like the cancer community, the CVD community would welcome a commitment from the Minister to publish a dedicated national CVD strategy. At the end of the day, that is what I am asking for.

--- Later in debate ---

[The Minister for Care (Stephen Kinnock)]

It is a great pleasure to serve under your chairship, Mr Mundell. I am indeed starting with an apology. I am very embarrassed by the fact that the debate was put by my officials in my diary as starting at 3.30 pm, and it is completely unacceptable that I arrived late. I apologise to you, Mr Mundell, and to the hon. Member for Strangford (Jim Shannon). It is a very embarrassing situation, and I am not happy about it at all.

I thank the hon. Member for Strangford for securing this debate on such an important issue and for the vital work he does as the chair of the APPG on vascular and venous disease. For their excellent contributions, I also thank my hon. Friend the Member for Dudley (Sonia Kumar), who spoke powerfully on the basis of her extensive real-world experience and expertise, my hon. Friend the Member for Ilford South (Jas Athwal), who spoke so movingly about his family and personal experiences, and the hon. Member for Mid Sussex (Alison Bennett), who spoke passionately about the shocking health disparities that blight our country, caused by 14 years of Tory neglect and incompetence.

Before I begin my remarks, I want to pay tribute to people working in local government, our NHS staff and GPs up and down the country for their efforts to find, treat, and manage people at risk of cardiovascular disease—also known as CVD. As hon. Members will know, health is a devolved issue, so my remarks will be limited to matters in England; however, I am happy to pick up on many of the broader points that the hon. Gentleman for Strangford has made.

The last Labour Government made significant progress on reducing premature deaths from CVD through the introduction of big-hitting interventions such as the ban on smoking in public places and increases in statin prescribing. However, as the hon. Member for Strangford said, among the many appalling findings of Lord Darzi’s report, there is clear evidence that progress on CVD stalled, and even went into reverse in some areas, between 2010 and 2024. That is why it is this Government’s mission to invest in the health service, alongside fundamental reform to the way that healthcare is delivered. We will build a health and care system fit for the future by moving from sickness to prevention, hospital to home, and analogue to digital. Tackling preventable ill health is a key part of these shifts.

As part of our 10-year health plan, we are committed to helping everyone to live a healthy life for longer, and as the hon. Gentleman also outlined in his remarks, too many lives are cut short by heart disease and strokes. In 2022, one quarter of all CVD deaths in the UK occurred among people under the age of 75. Tackling CVD is not just the right thing to do for patients; CVD is also having an impact on growth. People with CVD are more likely to leave the labour market than people with poor mental health, and we must dispel the fiction that people with CVD are always old and infirm. Around one in three people who have a heart attack, one in four people who have a stroke, and two in five people with coronary heart disease are of working age.

The hon. Gentleman referred to premature deaths, and we know from the most recent figures that I have, from 2023, that in England alone over 130,000 people died from CVD and over 30,000 people died before they turned 75. The best estimates show that the annual cost of CVD to the NHS is a staggering £8.3 billion, with knock-on effects of £21 billion to the wider economy. This is a huge challenge, which is why we are meeting it with great ambition: to reduce premature deaths from heart disease and stroke in people under 75 by one quarter within a decade. The Under-Secretary of State for Health and Social Care, my hon. Friend the Member for West Lancashire (Ashley Dalton), will be spearheading our work in this area, and will also be picking up on many of the issues that the hon. Gentleman raised in his speech.

We know that around 70% of the CVD burden is preventable and due to risk factors such as living with obesity, high blood pressure, high cholesterol and smoking—all of which can be reduced by behaviour changes, early identification and treatment. In England, the NHS health check is a free check-up for people between 40 and 74. The NHS health check is a wide-reaching programme delivered by local authorities in England. This CVD prevention programme aims to prevent heart disease, stroke, diabetes, and kidney disease—and also dementia for older patients. 

In the very short period of time that I have left, I just wanted to say that the hon. Member for Strangford called for the introduction of Lp(a) tests. As I understand it, lipoprotein(a) measurement is not currently recommended by NICE guidance, and there are no treatments available that specifically target Lp(a).  Instead, our focus is to improve the uptake of lipid-lowering therapies for prevention of CVD and to treat people with established CVD to NICE treatment targets. We will look closely at new tech and innovation and the essential role they will play in reducing health inequalities.

[Jim Shannon]

I apologise, but at the end of my speech I asked for three things. I asked whether there would be a willingness to meet me and representatives from the Lp(a) taskforce to discuss the essential steps that are needed, and that—

[David Mundell (in the Chair)]

Mr Shannon, I remind you that these proceedings go on to 4.30 pm, so there is no need for you to try to speak in a very short period of time.

[Jim Shannon]

I will not test your patience by speaking till 4.30 pm, Mr Mundell—I would test everybody’s patience if I were to do that—but could I sum up, if that is okay?

[David Mundell (in the Chair)]

Yes. That is what I was saying, but I felt you were summing in a way that anticipated that we were concluding at 4 pm.

[Jim Shannon]

I would have asked to intervene, but the Minister had sat down.

First, I thank all Members for coming along. The hon. Member for Dudley (Sonia Kumar) set the scene incredibly well with her knowledge and experience through her work—I think the Minister also referred to real-world experience. I thank her for her contribution; she is certainly establishing a name for herself in the Chamber.

There is no better way of illustrating a point than by telling a personal story, as the hon. Member for Ilford South (Jas Athwal) did. It reminds me of one of my constituents who came to see me one day; he is a man I know very well, although he is in a different political party. I asked him how he was and he said, “Jim, I went to see my doctor; I thought I was okay, but before he finished the tests on me, he gave me a bit of paper. I said, ‘What’s that for?’ and he said, ‘You have to go hospital right now.’” He went and had a quadruple bypass—he thought he was perfectly healthy, and did not know that he was not. I thank the hon. Member for Ilford South for sharing his story earlier.

The hon. Member for Mid Sussex (Alison Bennett) very clearly underlined the differential—that someone in Kensington and Chelsea can live for 20 years longer than someone in Blackpool. That has got to be wrong; we have to address those issues. She also mentioned the issue of obesity in children, and said that better food and school meals would improve public health and help to deliver more resilient people.

The shadow Minister, the hon. Member for Hinckley and Bosworth (Dr Evans), referred to genetic testing and to the cascading of those tests right down through families, which is one of the things that I asked for. He referred to the 10-year plan, of which the long-term condition of CVD needs to be a part. The aims of the Government seem to indicate that there will be a wish to do those things in relation to CVD, and we very much hope that the Minister can do them.

I thank the Minister for arriving—look, things happen in life. Sometimes I am late as well, which is probably my fault on most occasions and I take the blame. On this occasion, I asked the Minister for three things, and I will repeat them now. Is the Minister willing to meet me and representatives from the Lp(a) taskforce to discuss the essential steps that need to be taken now to ensure that the UK is in the best possible position to integrate Lp(a) testing? Will he commit to engaging with key system partners such as NICE, NHS England and the devolved Administrations to address relevant policy barriers that could hold back progress? I am ever mindful that the Lp(a) taskforce has already integrated the four nations of the United Kingdom in what it is doing. I always try to be positive—you know the person I am, Mr Mundell. My objective is not to catch anybody out; I only want positivity and a solution-based approach to what I am asking for. My last question was: will the Minister explore the scope to develop a dedicated national strategy for cardiovascular disease?

Those are my three requests, which I put forward genuinely, sincerely, honestly and kindly. I ask the Minister to let us all know his response and his policy, because I think that other Members, from all parties, would also like to know.

[David Mundell (in the Chair)]

I am sure the Minister will have heard the three points that Mr Shannon raised. On that basis, I will put the Question.

--- Later in debate ---

[Jim Shannon]

I am not quite sure what happened today, but I thank everyone—the Minister, all the hon. Members who made a contribution and the Backbench Business Committee for making this possible. We look forward to the delivery that the Government have indicated for the years ahead, on which all the nations of this great United Kingdom of Great Britain and Northern Ireland can work together.

[David Mundell (in the Chair)]

It has been a little unconventional, but we got there in the end.

Question put and agreed to.

Resolved,

That this House has considered the prevention of cardiovascular disease.

HIV Testing Week

Jim Shannon Excerpts

Thursday 13th February 2025 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

I congratulate the right hon. Member for Dumfriesshire, Clydesdale and Tweeddale (David Mundell) on leading today’s debate. I am my party’s health spokesperson, so I make it my business to come to health debates. Indeed, I think I have missed only one debate on HIV in the 14 years that I have been here.

Health is a devolved issue, so there may be different guidelines surrounding access to testing and to testing itself, but we all have the same goal wherever we are in this great United Kingdom of Great Britain and Northern Ireland. England could be the first country in the world to reach the goal, but we are currently not on track, so perhaps the Minister will tell us what action will be taken to ensure that happens.

In Northern Ireland, there has been a significant increase in testing in recent years. Efforts have been made to promote early intervention and treatment. The Public Health Agency in Northern Ireland revealed that in 2023, a record 92,635 tests were conducted. Given that the population is 1.9 million, I think that is very significant. That is a 5% rise on 2022, and it is the result of a massive commitment by us—health is devolved to us—to ensure early detection.

On the other hand, the number of new HIV cases has also risen. In 2023, there were 101 cases—67 men and 34 women—which was a 41% increase on 2021. I know the numbers are small, but the percentage is quite worrying. It is alarming that some of those cases were linked to injecting drugs, so will the Minister give us some idea of how we will address that issue? It is not just about physical exchange; it is also about the use of drugs, so what can be done to stop that? Sharing a needle is a cause of HIV for some drug users, and that concerns me.

The right hon. Gentleman referred to the ’70s and ’80s—I am of an age that I can remember them very well. Historically, HIV was a stigma, and it was Princess Diana who helped to take away some of that. I always remember that she met people with HIV, sat alongside them, shook hands with them and drank out of the same teacup, and that dispelled some of the concerns that people had, so we are thankful for that.

Testing for HIV of course must be discreet. There are numerous sexual health clinics across Northern Ireland, and indeed across the United Kingdom, that offer sexual health advice and testing. In addition, more discreet, self-testing kits are available, so we should be looking at some of those things.

Early diagnosis is key to ensuring that treatment can be started quicker. Treatment can reduce the viral load, which means that the disease becomes untransmissible. The hon. Member for Vauxhall and Camberwell Green (Florence Eshalomi) and the right hon. Member for Dumfriesshire, Clydesdale and Tweeddale mentioned HIV in third-world countries, and I agree with their sentiments entirely. The Elim church in my constituency of Strangford deals with people with HIV in Swaziland in Africa, and a choir comes over every year to do some fundraising. Every one of those young children with lovely voices received HIV from their parents when they were young, but the good thing is that they are now HIV-free as long as they have the drugs, so there is a way of going forward.

Charities, agencies and church organisations do their best to provide support. I have seen and understand what they can do. I very much look forward to hearing from the Minister. I hope she can work in parallel with her counterparts in the devolved nations to ensure that we tackle HIV together and meet our 2030 goals.

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.

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.

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.

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.