Westminster Hall

Thursday 9th March 2023 Westminster Hall

Thursday 9 March 2023

[Clive Efford in the Chair]

National No Smoking Day

Thursday 9th March 2023 Westminster Hall

15:49

[Bob Blackman (Harrow East) (Con)]

I beg to move,

That this House has considered national no smoking day.

It is a pleasure to serve under your chairmanship, Mr Efford. Many of us will be well aware that yesterday was No Smoking Day, an annual awareness day in the UK that aims to help people who wish to quit smoking. This year, No Smoking Day is raising awareness of the greatly increased risk of developing dementia that results from tobacco use. Through this debate, I hope that we can raise awareness of the considerable health risks associated with tobacco products.

It shocks me that, despite two out of three smokers dying from smoking-related illness, there are still 6.6 million people in the UK who smoke regularly. I firmly believe that if people were more aware of the self-inflicted harms that they are causing by using tobacco products regularly, that figure would drop considerably, and those people would be less inclined to continue smoking. It is therefore crucial that we reverse the withdrawal of Government funding for the no smoking public awareness campaign, which effectively highlighted the dangers associated with smoking and the support that is available to help people quit.

The wider health implications of smoking are truly frightening. Every single day in England, 150 new cases of cancer are diagnosed as a direct consequence of smoking. Additionally, a person is admitted to hospital with a smoking-related illness every single minute. Tobacco products are the biggest cause of death in the UK, killing on average 78,000 people a year through cancers, respiratory diseases, coronary heart disease, heart attacks and stroke, vascular disease, asthma and chronic obstructive pulmonary disease, or COPD. To be clear, that is 78,000 avoidable deaths caused by self-inflicted harm.

Smoking affects some socioeconomic groups more harshly than others. In areas around the city of Kingston upon Hull, 22% of residents engage in tobacco use, and in Blackpool the figure is as high as 20.6%. That encourages children and other members of the household to take up smoking, because they follow the example of others and have much easier access to such products in the home. When a parent smokes, their offspring are four times more likely to share the habit. I was horrified to learn that 90,000 children between 11 and 15 in this country regularly smoke, despite the fact that it is illegal for premises to supply tobacco to those children. The younger a person starts smoking, the harder it is for them to give up, and the more likely they are to continue the habit into their adult life. Some 80% of regular smokers started smoking before the age of 20.

Smoking in pregnancy is far too common, and it is an area that I have constantly campaigned on. If a mother is happy to smoke, being fully aware of the health implications, she is risking not only her health but the life of her unborn child. As soon as an innocent child, not even born, is subjected to heightened health risks because of smoking, it becomes a far more selfish and cruel act. Smoking during pregnancy is the leading modifiable risk factor in poor birth outcomes, including stillbirth, miscarriage and pre-term birth. Further, it considerably heightens the risk of the child contracting respiratory conditions; attention and hyperactivity difficulties; learning difficulties; problems of the ear, nose and throat; obesity; and diabetes. Unfortunately, there are over 51,000 babies subjected to such experiences each year. I am sure we all agree that that is 51,000 innocent babies too many. 

As I mentioned, the theme of No Smoking Day this year was the increased risk of dementia, so it would be remiss of me not to touch on the strong links between smoking and dementia. A recent study ranked smoking third out of nine modifiable risk factors leading to dementia. The World Health Organisation estimates that 14% of cases of Alzheimer’s disease worldwide are potentially attributable to smoking, and states that smoking increases the risk of vascular dementia and Alzheimer’s. Studies also show that people who smoke heavily—more than two packs a day—in mid-life have more than double the risk of developing Alzheimer’s disease or other forms of dementia two decades later.

It is important to recognise that there is probably an even stronger connection between smoking and dementia than the figures suggest. That is because a higher proportion of smokers die prematurely, so it is possible that the association between smoking and dementia has been obscured through a selection bias. Given that dementia is now the most feared health condition for all adults over the age of 55, I am sure the Minister will help to ensure that the data is shared with smokers whenever possible.

Smoking is not only hugely damaging to the health and wellbeing of individuals; it also puts a gigantic strain on the public purse and wider society. In 2021-22, the tax revenue from sales of tobacco reached £10.3 billion. That may seem a generous return to the Treasury, but it is tiny compared with the £20.6 billion that smoking actually costs the public finances. Let me break those figures down: £2.2 billion fell on the NHS, £1.3 billion fell on the social care system, and a staggering £17 billion was lost as a result of the reduction in taxes and increased benefit payments that arose from losses to productivity, including from tobacco-related lost earnings, unemployment and premature death.

The addictive nature of smoking products pushes many households into significant financial hardship. On average, those who smoke regularly spend more than £2,400 a year on tobacco. In 2022, that figure was enough to cover the average household energy bill—granted, perhaps it does not anymore, thanks to inflationary pressures. Research looking into the income and expenditure of households containing smokers found that 31% fell below the poverty line.

The socioeconomic inequality of smoking is huge. Those from poorer backgrounds and on lower incomes are considerably more likely to smoke, and in turn experience heightened health risks. Consequently, people born today in England’s more affluent areas are expected to live up to a decade longer on average than those in the least affluent areas. In Kingston upon Hull, 22% of households contain smokers, and the average income is £31,000. Comparatively, in west Oxfordshire, where the average salary is £40,000, the smoking rate drastically decreased to only 3.2%. Some £21.4 million in earnings is lost each year to smoking-related causes, and a further £20.2 million is lost due to smoking-related unemployment.

As I said, smokers are far more likely to contract cancer. I was unfortunate enough to witness that at first hand. When I was only 23, both my parents died as a direct result of smoking-related cancers. They died within a month of each other, which was a tragedy for my family and something that I remember every single day. It was a devastating period for my family, and the prospect of suddenly having to raise three younger sisters at a very young age was frightening—an experience I do not wish on any other individual.

Cancer treatments are not cheap. The average cost of treating a patient for lung cancer is more than £9,000 a year. That is a huge burden on already strained NHS budgets, and in many cases it is self-inflicted through smoking. Further, 75,000 GP appointments a year are a result of smoking-related illness. At approximately £30 an appointment, that could save the UK Government £2,250,000 annually and—very importantly in this day and age—would shorten waiting times for patients with other ailments. As I am sure my hon. Friend the Minister will agree, it is clear that we need to take urgent action to tackle this damaging practice.

[Mr Virendra Sharma (Ealing, Southall) (Lab)]

It is a pleasure to speak under your chairmanship, Mr Efford. On No Smoking Day, I am delighted to welcome the progress we have made as a country, and I am grateful to the hon. Member for securing the debate. I must declare that I am a non-smoker. In only a few years, smoking policy has worked. It has massively reduced prevalence, and people are healthier, fitter and living longer. Given how few Members are present, Mr Efford, I understand that I can talk a little longer, rather than having to intervene two or three times.

[Clive Efford (in the Chair)]

Order. Interventions should be short. Why not just make a short contribution?

[Mr Sharma]

I accept that. Working-class and black and minority ethnic communities are struggling to quit, and need more complex solutions. Does the hon. Member agree that vaping represents a less harmful alternative?

[Bob Blackman]

I thank the hon. Member for that brief intervention. From my perspective, I would encourage anyone who smokes and who wants to give up to try vaping. If vaping is considered by that individual to be a safer alternative, I would encourage them to try it. However, I am one of those people who say that we have to be very careful about vaping, because we do not know the long-term effects. It is certainly healthier to choose vaping as a way to give up smoking. However, I am concerned about the number of young people who are taking up vaping directly, and who may then go on to smoke, or to other ways of getting nicotine into their system. That is a really serious problem for the long term that the Government have to address.

As I was saying, the Government have set out a vision for England to be smoke-free by 2030, which I strongly welcome—I hope we can do it even more quickly than that —but Cancer Research UK, which has supplied me with information on this issue, has modelled the Government’s plan and suggests that they will not achieve the target until 2039 if recent trends continue. That is not good enough. The delay will cause around 1 million smoking-related cancer cases in the UK alone, so can my hon. Friend the Minister confirm how we will get back on track to reaching a smoke-free 2030?

Nothing would have a bigger impact on the number of preventable deaths in the UK than ending smoking. Smoking rates have thankfully come down, as indicated by the hon. Member for Ealing, Southall (Mr Sharma), and I want further action, so that the downward trend continues. Back in 2021, the Government committed to publishing a tobacco control plan, which we have yet to see. Smoking causes around 150 cases of cancer a day in the UK, meaning that since the last tobacco control plan expired in 2022, around 10,000 people’s lives have been changed forever with a smoking-attributable cancer diagnosis. Can the Minister confirm when the tobacco control plan for England will eventually be published? “Soon” is not good enough.

In June 2022, Javed Khan published his hugely anticipated independent review of tobacco control, which was commissioned by the UK Government. Like many others, I was pleased to contribute to the review, and we welcomed its pronouncements. It set out policy recommendations that would see England become smoke-free by 2030. However, despite being given clear recommendations and a road map of how to achieve the target months ago, the Government have yet to respond. I understand that Ministers have changed over the last year, particularly as a result of the changes in Government, but it is not good enough that we have not had a response to the long-awaited review.

It was stated that a response would be available in the spring. I am not sure if that is spring 2022, spring 2023 or, worse still, spring 2024, but the reality is that in ministerial terms, “spring” can be flexible—hence why we call it spring. Spring is almost upon us, so we await the response to the report. We need to know which recommendations the Government will choose to adopt, and which they will not, and why. Will my hon. Friend the Minister confirm when specifically the response to the Khan review will finally be published?

Next week’s Budget is a critical moment at which the Government must take the urgent action we are calling for. Without additional, sustainable funding, it will not be possible to deliver all the measures we need to make England smoke-free. Severe funding reductions have undermined our ability to deliver such measures. We need to encourage and help people to quit smoking. The reductions have been greatest in the most deprived areas of the country, where smoking is most likely to occur. Sadly, in 2022, only 67% of local authorities in England commissioned a specialist service open to all local people who smoke. That is largely due to financial pressure, following reductions to the public health grant. National spending in England on public education campaigns has dropped from a peak of 23,380,000 in 2008-09 to a mere 2.2 million in 2019-20. That is a 91% reduction. I am disappointed that funding for the No Smoking Day public awareness campaign has been completely scrapped, despite a mass of evidence suggesting that it was a highly effective campaign that had a direct effect on people who continue to smoke.

The four largest tobacco manufacturers make around £900 million of profits in the UK each year. Profit margins on cigarette sales are significantly higher—as much as 71%—than on other typical consumer products. Consequently, the all-party parliamentary group on smoking and health, which I have the privilege of chairing, has called on the Government to introduce a “polluter pays”-style charge on the tobacco industry. That would finally make the tobacco industry pay for the damage its products cause to our nation’s health, and for the strain on the NHS. Remember: this is the only product that people can legally buy that will kill them if they use it properly. It is an outrage that smokers are preyed on by these big tobacco companies. I accept that I may not get the answer I would like, but will the Minister confirm that the Government will introduce a “polluter pays” charge on the tobacco industry in the upcoming Budget?

I have a ten-minute rule Bill going through Parliament that would require people who sell tobacco products to be properly licensed. If the Minister cannot endorse the Bill, I would welcome a commitment from him and his Department to dealing with this issue once and for all, so that we have a proper licensing regime for the sale of tobacco products in this country.

As I come to the end of my speech, I remind colleagues that making Britain smoke-free by 2030 is a well backed public initiative. Recent polling showed that 70% of people supported the Government’s investing more money in helping England to reach the target. Of those people, 74% would prefer the money to come from the tobacco industry, so that it pays for the pollution it causes.

I thank hon. Members for attending the debate. I look forward to hearing the contributions from the Labour and SNP spokespersons, and the Minister’s response, as well as contributions from colleagues from across the House. I commend the debate to the House, and urge the Minister to take urgent action on tobacco today; that would improve the health of the nation, reduce pressure on the NHS, and put money back in the pockets of those who need it most.

[Several hon. Members rose—]

[Clive Efford (in the Chair)]

I remind Members that it helps the Chair determine who wants to speak if they bob in their places. I do not intend to impose a time limit; we have plenty of time for Back-Bench speeches. If my hon. Friend the Member for Ealing, Southall (Mr Sharma) has more of his intervention that he wants to use, perhaps he will make a speech when we reach the end of the list of speakers. I call Mary Glindon.

13:49

[Mary Glindon (North Tyneside) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Efford. I congratulate the hon. Member for Harrow East (Bob Blackman) on securing this debate. I hold him in high regard as a stalwart champion of the no smoking campaign. It is so sad to hear what made him into that champion. I am sure that what happened in his family has happened in many families in recent years.

I am not a smoker, but, as I have said in past debates on this subject, I was brought up in a household where both parents smoked. My mother died of breast cancer at the age of 72 and my father had a bad chest all his life. She was a Woodbine smoker, I might add. My late husband was a smoker for most of his life, from 1957—the year I was born—when he was only nine years old, and he gave up the habit on a number of occasions. Eventually, like so many smokers, he turned to vaping instead, which was a great relief to him and his pocket. How expensive smoking is for those on low incomes has already been referred to. It will come as no surprise to colleagues that I will talk about vaping as a safe alternative for those who already smoke.

One recommendation in last year’s Khan report on making smoking obsolete was about promoting vaping. Khan stated:

“The government must embrace the promotion of vaping as an effective tool to help people to quit smoking tobacco. We know vapes are not a ‘silver bullet’ nor are they totally risk-free, but the alternative”,

as has already been said, “is far worse.”

Dr Debbie Robson, a senior lecturer in tobacco harm reduction at King’s Institute of Psychiatry, Psychology and Neuroscience has said:

“The levels of exposure to cancer causing and other toxicants are drastically lower in people who vape compared with those who smoke.”

And Professor Ann McNeil, a professor of tobacco addiction at the institute, has said:

“Smoking is uniquely deadly and will kill one in two regular sustained smokers, yet around two-thirds of adult smokers, who would really benefit from switching to vaping, don’t know that vaping is less harmful”,

although evidence shows that vaping is

“unlikely to be risk-free.”

[Mr Sharma]

I will be brief. Does the hon. Lady agree that vaping represents a less harmful alternative, and that vaping products need to be safely regulated and trading standards empowered to strictly enforce their safety?

[Mary Glindon]

I thank my hon. Friend for that intervention. I will raise the issues he has just mentioned in my speech to reinforce what he has said.

In the past, Public Health England has stated that vaping was 95% safer than smoking tobacco, but anyone who does not already smoke should not be encouraged to take up vaping. I think we would all share that message, including those of us who champion vaping over smoking.

As a member of the all-party parliamentary group for vaping and given my interest in smoking cessation, I have worked with tobacco companies such as British American Tobacco UK and Japan Tobacco International as well as the UK Vaping Industry Association. Both the tobacco companies and the UKVIA are united in their efforts to make vaping products as safe as possible through regulation and to help prevent young people taking up vaping. I emphasise that because the companies are very conscious of the problems.

Although we acknowledge the importance of vaping in contributing to the fall in smoking since it entered the mainstream, one of the biggest concerns is products targeted to attract children and young people to start vaping. The industry is extremely concerned about rogue retailers selling e-cigarettes to minors, and are calling to increase fines for offenders to a massive amount. The UK Vaping Industry Association adheres to section 22 of the Advertising Standards Authority guide, which prevents the marketing of e-cigarettes to children. It calls for a licensing or approved retailer and distributor scheme to filter out retailers who are not applying the law, so that consumers and lawful retailers can feel confident that the vape products they purchase adhere to strict safety standards.

Given the rise of rogue traders selling vaping products to children—as well as illicit products—due to the lack of sufficient deterrents and enforcement, the industry sent an open letter to the Health Secretary with a number of recommendations, including increased penalties of at least £10,000 per instance of traders flouting the law. The Minister may be well aware of that, so I will not go into any more detail. Colleagues can look at that if they wish.

A recent press investigation into the increasing number of vaping products entering the UK market that do not comply with the tobacco and related product regulations, particularly in relation to the company ElfBar, prompted the British American Tobacco to conduct its own research. An independent, accredited laboratory carried out an analysis of ElfBar’s 600 products, which can be purchased from major UK supermarkets, including Asda, Tesco and Sainsbury’s. Shockingly, all the products tested contained significantly more than the permitted 2% of nicotine-containing e-liquid—often up to 50% or 60% more.

Following the publication of that information, a meeting was convened between the Medicines and Healthcare Products Regulatory Agency, the Office for Health Improvement and Disparities, and ElfBar last month. However, to date, no action has been taken by MHRA or Trading Standards to remove those non-compliant products from the market. The problem reinforces the industry’s call for tighter controls and fines, which I hope the Minister is considering in full.

The industry is also aware of the concerns about single-use vapes, which offer a cost-effective and easy way for those on low incomes to quit smoking, and thus help to address health inequalities. A recent report from the Office for National Statistics showed that smoking is at an all-time low, and acknowledged the important role played by vaping in reducing those figures. A proposed ban on single-use products could put doubt into the minds of smokers and vapers about the use of e-cigarettes, and that could lead them back on to the smoking trail. It is important to point out that the UKVIA is working to ensure compliance with the waste electrical and electronic equipment directive, and is working with the industry and other bodies, including the Department for Environment, Food and Rural Affairs, to proactively look at ways to maximise the recycling and reuse of vaping products.

It has been said before that vaping is not a panacea. However, it is a way out for people who have smoked for years and cannot give up the habit. It releases them from the dangers of smoking and moves them on to something we hope is less dangerous, and a lot more risk free. I hope the Minister will look at all the considerations that need to go into the tobacco control plan, and will work with those industries so that vaping can be an effective and safe tool as an alternative to smoking in the future.

13:59

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Efford. I thank the hon. Member for Harrow East (Bob Blackman) for securing this important debate.

As we have heard, smoking is the biggest driver of preventable lung disease and health inequalities. According to the charity Asthma + Lung UK, it is responsible for half of the difference in life expectancy between the richest and poorest. In particular, smoking causes nearly twice as many cancer cases in England’s most deprived areas as it does in the least.

I want to acknowledge the progress that has been made, specifically in my region of the north-east. The north-east has seen the biggest decline in adult smoking rates since 2005, when our region became host to the UK’s first ever dedicated regional programme for tobacco control, Fresh; but smoking remains a key driver of health inequalities in our region, where four out of 10 households with a smoker are living in poverty.

In my local authority area of Gateshead, where 17% of adults still smoke, healthy life expectancy is just 58 years. That is five years lower than the national average, and there is an even wider gap between Gateshead and more affluent areas. That is a real problem. I see too many constituents suffering from chronic obstructive pulmonary disease, of which smoking is the leading cause. Their lives are limited and cut short by COPD—by the effects of smoking. Some of us on the all-party parliamentary group on respiratory health have raised this issue in debates on COPD.

The Government have promised to extend healthy life expectancy by five years by 2035. Last year, the Khan review argued that the smoke-free 2030 target was vital for achieving that objective, as we have heard, but the review also found that without further action England will miss the smoke-free target by at least seven years, and the poorest areas will not meet it until 2044.

It has now been nearly a year since many of us went over to Church House to hear Javed Khan present the findings of his review, which were widely welcomed. Many of them, indeed, picked up on the report of the all-party parliamentary group on smoking and health from the previous year. The Government have had a few other things on their mind since then, with the ministerial merry-go-round of the summer and a revolving door of Ministers, but they must now focus on implementing the recommendations of the Khan review.

The indoor smoking ban in 2007 demonstrated that policy can change social norms and, in doing so, save lives. That is why we should look on smoking not only as a problem to be tackled but as an opportunity. Smoking helps to sustain deprivation, just as deprivation helps to sustain smoking. By tackling that connection, we can allow people to lead more healthy and fulfilling lives. Most people who smoke began as children; for every three young smokers it is estimated that only one will quit, and one of the remaining smokers will die prematurely from smoking-related disease or disability. In the north-east, the average age of smoking onset is just 15 years old.

The Khan review also outlined steps to facilitate a smoke-free generation by implementing a gradual rise in the age at which it is legal to purchase tobacco. The ambition of the recommendation is welcome, but its success will rely on tackling the illicit tobacco trade as well. Almost three quarters of young smokers in Tyne and Wear, County Durham and Northumberland have been offered illegal tobacco, and just under half have bought it. If we prevent children from ever starting to smoke, we can close gaps in healthy life expectancy for years, and generations, to come.

Children are four times more likely to start smoking if they live with an adult who smokes, which gives us all the more reason to tackle smoking in pregnancy. Unfortunately, since 2017, the number of mothers smoking at delivery has fallen by only two percentage points. The Khan review recommended financial incentives to support all pregnant women to quit. It also advocated the appointment of a stop-smoking midwife in every maternity department to provide expert support on the frontline. That will help to tackle another key driver of health inequalities. Currently, smoking in pregnancy is five times more common among the most deprived groups than among the least deprived. Rates are also much higher among people with a mental health condition. In my local authority area of Gateshead, more than 40% of people with a diagnosed serious mental health condition are smokers. The Government must do more to support high-risk groups who are disproportionately impacted by smoking and therefore most likely to bear the brunt of those inequalities in the future.

Smoking perpetuates inequality via its impact not only on health, but on personal finances. As we have heard, the average smoker spends just under £2,000 on tobacco. In Gateshead alone, almost 10,000 households are driven into poverty when income and smoking costs are taken into account. Meanwhile, more than 1,000 households are economically inactive due to smoking-related disease and disability. Put these financial effects together with the impact at the macro level, where local economies lose out by billions of pounds each year, and the impact is even more clear.

So what can we do? As the Khan report demonstrates, it is clear that comprehensive investment is needed to tackle smoking in our communities and address the scourge of health inequalities that result—but over the past decade, drastic cuts have undermined efforts to support people to quit smoking, particularly in the most deprived areas.

The public health grant, from which local authorities allocate funds for smoking cessation services, has been cut by almost half since 2015. That has been accompanied by a 60% fall in the number of people supported to stop smoking over the same period. Meanwhile, as we have heard, the four largest tobacco manufacturers make around £900 million of profit in the UK each year.

I am pleased that in the north-east all 12 councils and the North East and North Cumbria integrated care board have pledged funding to the Fresh programme for the next two years so that it can continue that really important smoking cessation work. I am glad to see that its latest campaign, “Don’t be the one”, will be launched on our north-east media on 20 March. If they and other smoking cessation services are to be able to continue their work effectively, to get out that message about not smoking, not least in the media, what is needed is much greater national funding.

When used as recommended by the manufacturer, cigarettes are the one legal consumer product that will kill most users. Two out of three people who smoke will die from smoking. A “polluter pays” tax will force the corporations to take responsibility for the social outcomes of their products and raise the money that is so desperately needed to fund easily accessible, high-quality support. Smoking costs the NHS £2.4 billion per year. This is a matter of invest to save. In particular, we need a specific approach for the most deprived communities and at-risk groups, including distribution of free swap-to-stop packs.

We have the opportunity now to prevent inequalities for the future. The Government must act to implement the recommendations of the Khan report and must urgently produce a tobacco control plan for England. Frankly, I do not want to be in this debate again next year, as I have been for the last three or four years, asking for a tobacco control plan again. My big ask for today is quite simple: that the Government get on with the tobacco control plan, incorporate the Khan recommendations and, simply, stop more people dying and becoming ill from smoking.

[Clive Efford (in the Chair)]

I intend to move to Front-Bench speeches at 2.28 pm. We have two speakers left. That should give you some idea of how long you have to speak, in order to allow 10 minutes for each of the Front-Bench speakers and two minutes for Bob Blackman to sum up. I now call Rachael Maskell.

14:09

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to serve under your chairmanship, Mr Efford. I congratulate the hon. Member for Harrow East (Bob Blackman) on securing today’s debate. I was really sorry to learn about the circumstances that have brought him here; they really do account for why he is such a passionate advocate for non-smoking.

For decades, tobacco companies have used every manipulative means possible to recruit the next generation of smokers. For them, it is about big profits—£900 million at last count. With around 75,000 victims of their exploits dying every year, those companies have to market their products to new generations to replace those who die. I am angry because they are deliberately causing harm and taking advantage of marketeering, peer pressure and a pack of lies around a pack of cigarettes to make their victims feel good about succumbing to the powers of their addictive means. Once people are hooked, companies draw their prey into a lifetime of handing over precious savings to deposit in their bank accounts.

Those companies are using their resources wisely. British American Tobacco has bankrolled the Institute of Economic Affairs, a Tory think-tank that wants to privatise the NHS. One of its trustees has reported funding a former Health Secretary with £32,000 between 2010 and 2018—the less said about him, the better. With 30 Tory MPs benefiting in all, what could their motivation be? What could BAT’s motivation be? We will never forget Margaret Thatcher taking $1 million from Philip Morris as a consultant.

It is children that these despicable companies are targeting. I have been following the vaping debate, and child vaping is the latest fad. British American Tobacco and others are at it again, addicting children to their products, using different products at different times, with different flavours and colours and cheap devices. They are once again addicting a generation. Among young people, vaping is now seen as cool, as smoking once was, but the harms of these stimulants are unknown, and a lifetime of expense lies ahead, costing users physically, mentally and financially. These wolves in sheep’s clothing need calling out, and today’s debate is a good place to start.

Tobacco is still the biggest killer, luring people into horrible diseases such as cancers—including lung cancer—stroke and heart disease, as well as dementia, which, as we have heard, is the focus of national No Smoking Day. Given that that costs the NHS £2.2 billion a year and social care £1.3 billion, I have to ask why the Government are content not to set out an ambitious plan that is ruthless with the tobacco giants yet compassionate with their victims, taking every step to draw people out of their addictions and recover their health. Why are Government paralysed when the evidence is screaming at them?

This is the difference between the Tory party and the Labour party: Labour knows that health inequality is unjust. We want to take people to a safer, healthier place. That will be our priority. Thirty years ago, I did my dissertation on this very issue for my degree, and my conclusions were simple: money buys silence. Labour must never touch dirty money, and nor will it. That money kills, whether directly or indirectly. Instead, we must invest in health.

According to Action on Smoking and Health, 9.2% of the community in my city of York smoke. While that is lower than the national average of 13%, it costs our city £46.9 million. In my ICB area of Humber and North Yorkshire, 2,500 people, sadly, die each year. The healthcare costs are £8.2 million, adding to economic costs of £19.9 million due to lost earnings and £10.9 million due to smoking-related unemployment. What a lot of money. Let us reflect: 6.6 million people smoke across the UK. There are 150 new cancer cases a day, and 54,300 a year. Every minute, another victim is admitted to hospital, with 506,100 hospital admissions attributed to smoking. Last year, the cost to the public finances was £2.6 billion.

These wretched companies are fleecing their victims of their hard-earned living, with an average smoker spending £2,500 a year. Some 70% of smokers want to quit, so we need to ensure they have the means to achieve that. Let us remember that these multimillion-pound companies prey on the poorest, with 31% of households with somebody who smokes falling below the poverty line—if ever there was exploitation, this is it. Many new communities of people coming into the UK from challenging places across the world also have a high prevalence of smoking, presenting a new challenge for public health teams, and it is important to get on top of that too.

The UK Government aim to reduce the level of smoking to just 5% by 2030, but there is no tobacco control plan. In York, the local authority’s public health grant has been cut by 40% over the term of this Government, yet we do not know what is to come in 22 days’ time, when the public health grant runs out. On top of that, we have not seen the health disparities White Paper. We understand that it has been scrapped, so what on earth is going on? Tobacco companies make an annual profit of £900 million, yet only £2.2 million is spent on prevention. We need funding, we need professionals, we need education and we urgently need to move people to a space where their lungs and bodies can start to recover.

Despite Javed Khan’s independent review of tobacco control, published nearly a year ago, the Minister has been silent. Mr Khan recommends spending £125 million each year to enable the UK to hit its target, which will be missed without the investment that we absolutely need to see; increasing the age at which people can buy tobacco products; and ensuring that every public health intervention is made. I take the point made by my hon. Friend the Member for Blaydon (Liz Twist) about the illicit trade in tobacco, which we also need to crack down on. There are 15 strong recommendations in Mr Khan’s review, and I want to see the Government taking action, responding to that report and publishing their plan.

Unlike the Minister, Humber and North Yorkshire ICB is not sitting back. Its outstanding public health team are engaging in driving down smoking levels, with a new centre of excellence to co-ordinate population-level interventions, and investing in programmes of activity targeted at those who most need them. With stop smoking support and lung health check screening, work is under way to screen and divert. Like many colleagues across the House, I am asking the Government to publish the tobacco control plan; to publish a strategy to tackle the rise in vaping, particularly among our young people; to give local authorities the means and tools to safeguard a generation; and to introduce an annual public health windfall tax on these companies in the Budget next week. It is all about profit for them, and that profit should be used for public health.

[Mr Sharma]

Does my hon. Friend agree that the Government’s strategy and plan should include special provision for black, Asian and minority ethnic communities, so that they can be targeted and helped to give up this dirty habit?

[Rachael Maskell]

I thank my hon. Friend for making that really important intervention. We must help communities that are finding it hard to quit, including new communities. We really welcome the large number of asylum seekers who have come to York, but we know that there is a higher prevalence of smoking in that community. We must ensure that proper interventions are targeted at BAME communities too.

The figures speak for themselves, and the Minister cannot afford to sit back any longer. Labour will not. We want to save lives, and we want to save the health of our NHS too.

14:19

[Mary Kelly Foy (City of Durham) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Efford. I congratulate the hon. Member for Harrow East (Bob Blackman) on securing this really important debate to mark national No Smoking Day. For the record, I am vice-chair of the APPG on smoking and health and was Gateshead Council’s cabinet lead on public health for 10 years, so I am passionate about making smoking history. It is telling that a number of Members present are from the north-east, and we will be reiterating the same messages.

The last tobacco control plan expired at the end of last year, and we are still waiting for the response from the Government to Javed Khan’s independent review on tobacco control. While we wait, thousands of people are getting sick and dying from smoking-related illnesses that are wholly preventable. Since 2000, more than 113,000 people in the north-east have died from smoking, and one person is admitted to hospital in the UK every minute due to smoking.

Although there is rightly a lot of discussion about smoking being the No. 1 cause of cancer, it is important to recognise the host of life-threatening and life-altering illnesses caused by smoking, including COPD, heart disease, dementia, stroke and diabetes. I am therefore delighted that this year’s No Smoking Day campaign is shining a light on the link between smoking and brain health. Smoking has been identified as one of the 12 risk factors that, if eliminated, could collectively prevent or delay up to 40% of dementia cases. Alzheimer’s Research UK found that dementia is the most feared health condition for people over the age of 55. However, only one in five people who smoke in the north-east are aware that smoking raises the risk of dementia. It is therefore vital to get that message out there. It is great that Fresh’s radio ad on this issue is estimated to reach more than 670,000 people in the north-east. I am proud that the north-east has been a trailblazer on this issue, with local authorities across the region working together to fund Fresh, which is a highly effective tobacco control programme. It has nearly halved the smoking rate in the north-east since it was set up. I am pleased to hear that Fresh will once again be funded by all 12 local authorities in the region.

Although it is great to see that work happening locally, it is vital that it is supported by much more investment at a national level. It is shocking that England is on track to miss the smoke free 2030 ambition by nine years, while projections by Cancer Research UK suggest that it will take a further 20 years to get smoking down to 5% in England’s poorest communities. The north-east is the most disadvantaged region in England. With that come high rates of smoking, which means there is further for us to go to become smoke free. The fact that smoking rates are disproportionately high among deprived communities highlights the fact that smoking is one of the leading drivers of health inequalities in our society. As we have heard, smoking during pregnancy is five times more common in the most deprived communities than in the least deprived. In County Durham, 704 women a year are smokers when they give birth, while 41,233 children live in households with adults who smoke. That not only has severe health consequences for children living in deprived areas, but increases fourfold their chance of taking up smoking and remaining a smoker in adulthood.

As well as having a shorter life expectancy overall, men and women in the most deprived areas also suffer from ill health for more of their lives. The levelling-up White Paper identified addressing health inequalities as a priority, yet little has been done so far. The Government’s lack of action and their delay in responding to the Khan review threaten our ability not just to achieve the 2030 smoke free goal but to level up. They must take action now and look urgently to implement the recommendations in the report from the APPG on smoking and health and in the Khan review to tackle the prevalence of long-term illness in areas of deprivation.

We all know that smoking is our biggest preventable killer and, as we have just heard, it is devastating for the thousands of families who lose loved ones each year. It also has significant implications for our economy, our local authorities and our health service. It is estimated that smoking costs County Durham £211.9 million each year, £26 million of which is spent on healthcare. Preventing ill health is key, and it is clear that effective Government action on the issue would relieve the significant pressure that smoking places on our health and social care services. There is no time to waste when we consider that our NHS is in crisis as resources are stretched to the absolute limit.

We must also ensure that smokers have the best chance of success when they attempt to quit, whether that is through support from local stop smoking services or access to alternatives. At the same time, we must prevent children and young people from taking up smoking in the first place, reduce the demand for and supply of illegal tobacco, and support further enforcement around illicit tobacco.

Four years ago, the Government set out their ambition for England to become smoke free by 2030. In April 2022, I asked the Government to ensure that the tobacco control plan would deliver their ambition and that it would be published no later than three months after the Khan review. Here we are, nearly 12 months on, and I am still asking the same question and we are still waiting for action. The chair of the Durham health and wellbeing board even wrote to the Secretary of State about the Khan review, but she received a non-committal response. With that in mind, will the Minister tell us when he plans to publish the tobacco control plan and what the Government intend to commit to on the back of the Khan review? Every day that we wait, too many people are dying needlessly.

[Clive Efford (in the Chair)]

Absolutely impeccable. Thank you very much—you have made it very easy to chair.

14:26

[Stuart C. McDonald (Cumbernauld, Kilsyth and Kirkintilloch East) (SNP)]

It is a pleasure to serve under your chairmanship, Mr Efford. I congratulate the hon. Member for Harrow East (Bob Blackman) on securing the debate and, more than that, I thank him for his tireless and enduring campaigning. He has spoken about this issue on many occasions, and we acknowledge and thank him for that.

We have come a long way, but the impact of smoking is still immense, as we have heard. It is also very personal, and we heard from the hon. Member himself, and from other hon. Members, about that personal impact. On that note, I pay tribute to my researcher Gillian, who helped me to prepare for the debate with her usual expertise, but also with even more passion than usual. That is because she lost her father, Tom Barr, suddenly in February 2021 to COPD caused by smoking. In a way, this is a tribute to him and to Gillian, of whom he was rightly proud.

As has been highlighted, this year’s national No Smoking Day theme is “Stopping smoking improves your brain health”, because research shows that quitting smoking reduces the risk of dementia. ASH Scotland’s theme this year is “Quit and win”, which focuses on the benefits for people’s health, wellbeing and personal finances of giving up the habit. The Scottish Government also have two campaigns that run throughout the year: “Take it right outside”, which focuses on communicating the harms of second-hand smoke and the importance of a smoke-free home and car, and “Quit your way”, which addresses the individual needs of people who wish to quit.

Let me turn first to the impact on people and communities. The hon. Member for Harrow East rightly spoke about the frightening consequences of smoking and, in particular, set out the significant link between smoking and dementia, as did the hon. Member for City of Durham (Mary Kelly Foy). According to ASH Scotland, smoking causes 100,000 hospitalisations and 9,000 deaths in the country each year. The Scottish health survey 2021 sets out that smoking is the cause of about one in five deaths and is the primary preventable cause of premature death and ill health.

As we have heard, particularly from the group of north-east MPs, who are well represented here today, a further major challenge is the way in which smoking exacerbates and widens health inequalities. In the most deprived communities in Scotland, one in three people smoke, compared with one in 10 in the least deprived communities. ASH Scotland also highlights that the average smoking household in the country’s lowest income group will spend up to 30% of its income on tobacco in 2023—around nine times more than the 3.35% estimated to be spent by similar households in the highest income groups. It is clear that the huge cost of cigarettes, coupled with the cost of living crisis, is pushing more people into worsening poverty. In that sense, addiction is not just a public health issue but a social justice issue.

There has been some interesting recent research by the British Medical Journal, which found that in Scotland, residents of areas with high outlet density are more likely to smoke and less likely to be ex-smokers, with related evidence that the most deprived neighbourhoods in Scotland have the highest density of retailers. Addressing the density of retailers could be one way to seek to address these inequalities.

I turn to the impact on public services and the economy. As we have heard, smoking remains the biggest cause of cancer and death, and it uses a considerable amount of NHS resources across each of the four nations. The annual cost to NHS Scotland of treating smoking-related diseases is estimated to exceed £300 million, and it could be higher than £500 million each year. Ill health and disability caused by tobacco, alcohol, weight and obesity are estimated to cost the Scottish economy between £5.6 billion and £9.3 billion each and every year.

It is clear that smoking continues to wreak havoc on people’s lives and create a significant drain on our health and social care services. The hon. Member for Blaydon (Liz Twist) was quite right to say it is important we acknowledge that progress is being made. We have seen a reduction in the number of people smoking, from 31% down to 17% in 2019. That is still falling, and the pattern is similar across the UK.

We should acknowledge the measures introduced by Governments of different political persuasions in the different parts of the United Kingdom, often at similar points in time—for example, the ban on tobacco advertising in 2002 in Scotland; banning smoking in enclosed public spaces from 2006; raising the age at which tobacco can be purchased from 16 to 18; making prisons smoke-free from November 2018; and banning smoking around hospital buildings in 2020. There are various other measures on top of those as well.

As we have heard, there is a lot more work to do. We need to go further. The target set currently by the Scottish Government is to reduce smoking rates to less than 5% of the adult population by 2034. We are really seeking to create a new generation who have never smoked and do not want to smoke, and to put tobacco use out of sight and out of mind for future generations.

Five years on from the original tobacco action plan, the Scottish Government are due to publish a new one in autumn this year. They are considering a range of additional measures about prohibiting smoking in areas that have so far been untargeted—for example, public playgrounds, outdoor care areas and so on. We should be considering even more, and this debate has highlighted many policy areas that should be considered by Governments at all levels, including those in the Khan review.

We have heard about the possibility of further regulation and increasing funding for tobacco control, as well as suggestions for some sort of windfall tax on tobacco manufacturers. Given the costs borne by public services for a product that is wreaking considerable harm and sold at huge profits by just a handful of tobacco companies, I thought the hon. Member for York Central (Rachael Maskell) made some powerful points in that regard. The hon. Member for Blaydon highlighted various recommendations in the Khan review that are designed to address smoking during pregnancy; again, that requires serious consideration. All Governments should continue to learn from each other about what works best.

The final thing I will touch on is simply getting the message out there that help is available. We all acknowledge that quitting is not easy. Giving up smoking and dealing with the related cravings, triggers and withdrawal symptoms can be incredibly hard, as anyone who has tried can attest. Smoking is extremely physically addictive. The physical feelings that people get from it include improvements in mood, increased concentration, reduced anger and stress and relaxed muscles, but they are all very short term. That means that many people who stop smoking can feel anxious and suffer many withdrawal symptoms—disruption to their routine, triggers, cravings and side effects.

The message to get out there is that support is available. If someone feels able to take the first step, it is not something they have to do themselves. Localised support is available from NHS stop smoking services, GPs and local pharmacists. They are all there to help people and point them in the direction that is right for each individual person. For example, support from NHS Lanarkshire, one of the two health boards in my constituency, includes one-to-one telephone or video calls, local pharmacy support in the form of free stop smoking help, nicotine replacement therapy delivered to people’s homes, personalised quit plans and a helpline. People can search online for further information.

Smoking creates unimaginable pain and suffering for both the smoker and, as we have heard, the families who have to watch their loved ones suffer. Giving up is absolutely worth it, though—people can get their lungs back, that heavy feeling in their chest goes away and they can breathe in the fresh air and feel their energy levels and a clear head returning. Stopping smoking improves physical health and immediately reduces the risk of heart disease, cancer, stroke, diabetes, rheumatoid arthritis and dementia, as well as improving mental health and wellbeing in as little as six weeks of being smoke-free. That is transformational, and it can be done. If people can be supported to do that, they will benefit, their families will benefit and all of us will benefit, and we will be grateful for that.

14:34

[Andrew Gwynne (Denton and Reddish) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Efford, and to speak on behalf of the shadow Health and Social Care team. I congratulate the hon. Member for Harrow East (Bob Blackman), not just on securing the debate and on his opening speech, but for all the work that he has done over a long period of time on the issue. We know from his contribution today what drove him to champion the cause of smoke-free England 2030, and we thank him for the work that he has done. This is not a party political issue; it is something on which we all want action.

We also had good contributions from my hon. Friends the Members for North Tyneside (Mary Glindon), for York Central (Rachael Maskell), for Blaydon (Liz Twist) and for City of Durham (Mary Kelly Foy), and from the hon. Member for Cumbernauld, Kilsyth and Kirkintilloch East (Stuart C. McDonald), who leads on the issue for the SNP, and helpful interventions from my hon. Friend the Member for Ealing, Southall (Mr Sharma).

The first No Smoking Day took place in 1984. Back then, 35% of people smoked. In the almost 40 years since then, we have made great strides in tackling smoking prevalence. We now have a smoking rate of around 13%. We have seen a clampdown on tobacco advertisements, an increase in public awareness of the dangers of cigarettes, and, most notably, Labour’s ban on indoor smoking, which led to a truly transformative impact on public health.

Do not get me wrong—smoking prevalence is still too high, and incredibly so in some of the poorest communities in England—but it is undeniably heartening to see the progress that has been made in the last four decades. The progress is primarily thanks to the tireless work of public health researchers and campaigners, who sounded the alarm about the dangers of smoking, and who continue to put much-needed pressure on policy makers for further action.

I do not say that to give us all a pat on the back, but to highlight how political will can make a real difference. We need that political will now more than ever. This Government have committed to a smoke-free England by 2030—an ambition that is supported across the House. However, we are on track to miss the target by around nine years, which is frankly unacceptable. The Government should not commit to a target because it is politically expedient, but then never deliver it. We need to see smoke-free 2030. Why? Because every year, the evidence of the damage of smoking continues to pile up. Smoking causes around 75,000 deaths every year in the UK alone. It harms pretty much every organ in the body. As the research to mark this year’s debate demonstrates, it is strongly linked to dementia, too. In addition to the tragic human cost, smoking also costs the economy around £20 billion in lost productivity, ill health and NHS resources. The facts are overwhelming, and we must act.

I am sure the Minister will agree on all those points, and I would like to raise a few matters on which I hope we can get some clarity. The first has already been mentioned to my hon. Friends—the tobacco control plan, which seems to have disappeared into the ether. Can the Minister confirm that he still intends to publish the tobacco control plan, and when it will be released? The hon. Member for Harrow East was very forceful on this point. If, as I fear, it is being held back because the Prime Minister is scared of upsetting some on his Back Benches, the Minister should front up and admit it.

The last tobacco control plan was published almost six years ago, and it has now expired. We are left in the bizarre situation where the Government continue to insist they are committed to smoke-free 2030, but they have no plan for how they intend to get there. The Minister is driving us to a destination, but he forgot to bring the map.

In addition to providing a date for the next tobacco control plan, will the Minister provide a date for when he expects to respond in full to Javed Khan’s smoke-free review, which his Department commissioned and seems to have forgotten? Secondly, given the extremely concerning figures from ASH that show just 18% of smokers know that smoking can cause dementia, will the Minister advise Members on what action the Government will take to increase awareness of that risk? Concerns have rightly been raised by public health charities about the fact that media spending on stop smoking campaigns has declined by 95% since 2008-09. Will the Minister confirm how much his Department has earmarked for spending on TV ads for Stoptober this coming October, and if he has assessed how current media campaigns are performing in raising public awareness?

Finally, it would be remiss of me not to mention the public health grant, which has still not been released to local authorities in England. I asked the Minister about this at Health questions on Tuesday and was told the grant was coming in days, not weeks. I am not sure what that means, because we are two days on and there is still no sign of it. Any additional information the Minister can give would be greatly appreciated, not least because this grant is essential to smoking cessation services in communities across the country, including communities I represent in Greater Manchester.

It is time to get serious about tackling smoking prevalence. The last Labour Government took decisive steps to improve public health, and we would do so again. That is why the next Labour Government will consult on all Javed Khan’s smoke-free 2030 recommendations and put prevention at the heart of everything they do. Our NHS is at breaking point. Seven million people are on waiting lists. Solving that challenge obviously requires an expansion of the NHS workforce, which Labour is proud to have committed to, but unless we simultaneously tackle the root causes of why people get ill, we do not stand a chance of rebuilding our NHS and making it fit for the future.

Labour stands ready and waiting to build a healthier, happier and more prosperous England. Until then, the Minister has my assurances that whatever support the Government need to get back on track for their smoke-free 2030 target in England, Labour will provide. He need not rely on the votes of those in his party who do not necessarily understand the importance of public health. Tackling smoking is not partisan. It is in all of our interests to work towards a smoke-free 2030, so my message to the Minister is clear: we will support him, and let’s get on with it.

14:39

[The Parliamentary Under-Secretary of State for Health and Social Care (Neil O’Brien)]

It is a pleasure to serve under your chairmanship, Mr Efford. I thank my hon. Friend the Member for Harrow East (Bob Blackman) for securing this important debate. He spoke brilliantly, marshalling his argument and speaking from terrible personal experience. I thank him for not just his speech, but his advice more generally. I thank other Members for their thoughtful contributions. The hon. Member for North Tyneside (Mary Glindon) made an important point about the huge potential of vaping to help people stop smoking because it is much safer, but we must balance that against the important point made by the hon. Member for York Central (Rachael Maskell) about the need to prevent non-smokers, particularly children, from starting vaping. The hon. Member for Blaydon (Liz Twist) made an important point about the regional and local impact of smoking, and its negative impact on levelling up. She is quite right. I notice that the north-east is well represented here today, as well as north London. I thank all hon. Members for their contributions.

Yesterday was No Smoking Day, which presents a timely opportunity to have this conversation. Since I spoke at the last Commons debate on a smokefree 2030 in November, adult smoking rates in England have gone down to 13%, an all-time low. That continues the downward trajectory in smoking rates over the past few decades, moving from 45% in the 1970s to 20% in 2010 to 13% now. As several hon. Members have pointed out, our efforts to reduce smoking are a public health success story and are widely recognised as some of the most comprehensive in the world.

In 2021-22, we invested £68 million in local authority stop smoking services through the public health grant, and nearly 100,000 people quit with their support last year. I am proud to say that we have recorded more than 5 million successful quits since stop smoking services were established across England in 2000. That is 5 million lives that have been saved or improved as a result of quitting smoking.

Last year alone, the NHS invested £35 million in tobacco-dependency treatment. The NHS has committed to ensuring that all smokers admitted to hospital are offered NHS-funded tobacco treatment services. Pregnant women are routinely offered a carbon monoxide test, which is used to identify smokers and to refer them to support to quit. National campaigns, such as Stoptober, have helped 2.1 million people to quit since their inception in 2012.

We have introduced a range of impactful smoke-free legislation, such as that referred to by the hon. Member for Denton and Reddish (Andrew Gwynne), including the ban on smoking in cars when children are present, plain packaging on cigarette packs and display bans, and raising the age for the sale of tobacco from 16 to 18. There are many more initiatives, and the legislation has been a cross-party effort. All those measures have contributed to reducing smoking rates overall, particularly among children. In 2021, just 1% of 11 to 15-year-olds were regular smokers, which is the lowest rate on record, although that is still, of course, much too high.

My hon. Friend the Member for Harrow East said that we have to go further and faster, and he is absolutely right. Smoking is still the leading preventable cause of health disparities, premature disability and death. There is an economic cost to smoking that puts a huge direct drain on household finances, as hon. Members have pointed out, and has a wider impact on productivity taxation and our wider economy. Tragically, two out of three smokers will die from smoking unless they quit.

Smokers are 36% more likely to be admitted to hospital, and the cost to the NHS is huge. The average smoker needs social care 10 years before a non-smoker, so the cost to social care is huge, too. That is why tackling smoking is central to our forthcoming major conditions strategy, which takes the place of the previous strategy mentioned by the hon. Member for Blaydon. Smoking and other causes of preventable ill health will be central to that strategy.

[Liz Twist]

Will the Minister clarify whether the tobacco control plan will come within the major conditions strategy?

[Neil O'Brien]

I will hopefully reassure the hon. Lady on that point shortly. I was saying that tobacco and tobacco control will be threaded through the major conditions strategy, but I will come to our specific plans to control smoking in a moment.

The major conditions strategy will look at cancers, cardiovascular disease, stroke and diabetes, chronic respiratory diseases, dementia—which has been mentioned several times today—and mental ill health. Smoking is a contributor to all those major conditions. Put simply, it makes all of them worse. It increases the risk of heart disease, heart attack and stroke, often disabling people for years. As my hon. Friend the Member for Harrow East mentioned, the theme for No Smoking Day this year is dementia and how stopping smoking protects brain health.

If smoking disappeared, the great majority of cancers would disappear for a large proportion of our population. More than 70% of lung cancer cases in the UK are linked to exposure to tobacco smoke. There is even a connection between smoking and diabetes. Cigarette smoking is one of the most important modifiable risk factors for type 2 diabetes. All these risks, across all these different conditions, can be changed by one lifestyle modification.

As many hon. Members have highlighted, last year the Government asked Dr Javed Khan to undertake an independent review to help to meet the smokefree 2030 ambition and reduce the devastation that smoking causes. My hon. Friend asked when we will set out our response. In the coming weeks, I will unveil a set of proposals to realise the smokefree 2030 ambition and to respond to the Khan review’s recommendations.

I thank hon. Members for their patience. Although I cannot divulge the specifics of the proposals at this time, I assure hon. Members that they are grounded in the best evidence on reducing tobacco use and its associated harms. They are bold, innovative and ambitious, and we have carefully considered the Khan review’s recommendations as part of the process. I look forward to the opportunity to share more details with hon. Members very soon and to set out more details of our road map to a smokefree 2030.

14:50

[Bob Blackman]

I thank my hon. Friend the Minister, the Opposition spokesperson, the hon. Member for Denton and Reddish (Andrew Gwynne), and the SNP spokesman, the hon. Member for Cumbernauld, Kilsyth and Kirkintilloch East (Stuart C. McDonald), as well as all Back-Bench colleagues who made this a very powerful debate. As we commemorate national No Smoking Day and seek to reduce dementia in society, it is vital that we look at the causal links between smoking, dementia and many other diseases such as cancer, as hon. Members pointed out.

I look forward to hearing the Government’s response very soon—that is very good news. Very soon is better than soon, and in a few weeks is even better, so we look forward to that. Clearly, the Chancellor has the opportunity in the Budget to introduce the levy that we have long campaigned for, which would directly contribute money to the national health service to treat victims of smoking.

Almost 11 years ago, I led a debate in this Chamber on standardised packaging of tobacco products. The Opposition spokesman at the time said, “Labour has no plans to endorse standardised packaging.” The Minister, who is no longer in the House, said, “The Government have no plans.” A few short years later, we got standardised packaging of tobacco products.

Those who have contributed to this debate should remember this: every single move that Governments of all persuasions have made to restrict smoking and, as a result, improve health have come from Back Benchers. Back-Bench Labour Members introduced the ban on smoking in cars with children present. We should always remember that these great initiatives come from Back Benchers.

I have campaigned on this issue since I was elected in 2010. I am afraid we cannot wait for a Labour Government to introduce the Khan review. Labour Members will have to wait a very long time to have that opportunity, so it is most important that the Government get on with the job. As I said, this has the support of the whole House. Let us get on and deliver it so that fewer people die from smoking.

Question put and agreed to.

Resolved,

That this House has considered national no smoking day.

14:53

Sitting suspended.

Patients with Rare Diseases

Thursday 9th March 2023 Westminster Hall

[Mr Virendra Sharma in the Chair]

14:59

[Jim Shannon (Strangford) (DUP)]

I beg to move,

That this House has considered the matter of patients with rare diseases.

I thank Members for attending this afternoon. The 3 o’clock debate is often referred to as the graveyard shift, simply because there is no pressure on us in the main Chamber, so most Members have probably decided to make their way home. However, I am very pleased that some Members have made it their business to stay, so I thank them for that.

I am pleased to see the Minister in her place—she knows that I am fond of her. She always responds to my questions, as she did on Tuesday during Health questions. I am pleased as well to see the shadow Minister, the hon. Member for Enfield North (Feryal Clark). She is looking bright and breezy, given her condition. She does not have long to go now, but I am pleased to see her and we think of her often.

I have always been interested in rare diseases. In the Northern Ireland Assembly, I was a member of the Northern Ireland rare disease partnership. We have Patrick Toland from Northern Ireland in the Public Gallery today. I am pleased to see him and other members of rare disease groups. I will refer to them during my speech.

This subject first came to my attention through a constituent who told me that she had a rare disease. That is how I learnt about its prevalence and the numbers of people with rare diseases. I am the Democratic Unionist party’s health spokesperson, so I am pleased to be in a position to raise the issue of rare diseases in the best place—right here in Westminster Hall with a member of the Government, the Minister. Other representatives are here to do the same thing.

I have been contacted by many people who have asked me to highlight their cause. I will attempt to highlight as many as I can while still doing them justice. Rare diseases might simply be numbers for many of us, but for the families and the individuals, they are everything in life. We will remember that when we mention the figures. As some might be aware, 3.5 million people in the UK will be affected by a rare disease at some point in their lives, and 95% of rare diseases currently lack an approved treatment. However, there is hope on the horizon for the patients living with these devastating diseases—we will hear examples from other Members as well—with an increasing number of gene therapies.

I am pleased to see in the Chamber the chair of the all-party group on rare, genetic and undiagnosed conditions, the hon. Member for Blaydon (Liz Twist). She has much knowledge and brings a depth of detail and evidence to this debate. I congratulate her on the work that she does in the APPG, and I look forward to her contribution.

When it comes to gene therapies and advanced therapy medicinal products, many of which target rare diseases, there is the potential for those therapies to become a reality. Ultimately, we are always seeking that reality. The 62 ATMPs that are expected to be launched in the UK between 2023 and 2027 give us hope and some confidence that therapies and medications will be available for those with rare diseases. There is a need to act now to prepare the UK access and reimbursement landscape and to ensure that the system is ready to capitalise on the opportunities presented by the therapies. We look to the Minister—no pressure—to understand our preparedness and tell us what steps will be taken to prepare the NHS for the changes on the horizon.

I know that the Minister is responsible for England and that health issues are devolved to Scotland, Wales and Northern Ireland. However, I will ask towards the end, when we summarise our thoughts, that the Minister and the devolved Administrations work together. That is really important, because we can benefit from one another’s knowledge of the strategies here and the strategies in the regional Administrations.

The Neurological Alliance, which is a network of 80 organisations that work together to improve neuro services and transform the quality of life for people with neurological conditions, reports that one in six people in the United Kingdom of Great Britain and Northern Ireland live with a neurological condition. One of those is a rare neurological condition—an acquired nerve condition—called Miller Fisher syndrome. I ask about that because it has been brought to my attention by some of my constituents back home. Miller Fisher syndrome, or MFS, is a rare acquired nerve disease, first recognised by James Collier in 1932 as a clinical triad of ataxia, areflexia and—I will get tied up in these words—ophthalmoplegia. It was described in 1956 by Charles Miller Fisher as a possible variant of Guillain-Barré syndrome. I suspect that we may know that from the past.

MFS is rare, so like many rare diseases, it is often difficult to diagnose. It affects one to two people per 1 million each year. In MFS, the immune system attacks the nerves, which causes the demyelination of the nerve fibres in the brain and spinal cord. Most patients with MFS have a unique antibody that characterises the disorder. Patients suffer weakness of the eye muscles, blurred vision, impaired limb co-ordination, unsteadiness of gait and a loss of tendon reflexes. Other symptoms may include facial paralysis, difficulty swallowing, limb weakness and respiratory failure. With Miller Fisher syndrome, a lot of complex issues hit the body all at once.

MFS is a rare condition for doctors to encounter, so the presenting symptoms can initially lead to a list of different possible diagnoses. It is not possible for every doctor who is confronted with those symptoms to know exactly what the condition is. I will give another example shortly that shows that it sometimes takes days before those with the knowledge of rare diseases can diagnose which one it is. The presenting symptoms of ataxia and ophthalmoplegia can be confusing for the consultant and can suggest signs of motor neurone disease or, sometimes, multiple sclerosis. I have had many friends over the years who have had MS, and I had a very good friend who, unfortunately, died of motor neurone disease. I know some of the actions and symptoms that come from that.

One of my members of staff developed MFS in 2015. She reported the experience of the early onset of MFS as a gradual loss of control of the arms and legs in the days before, severe back pain, and a loss of feeling in the fingers and toes. She recalls, just before the onset of the condition, staggering into accident and emergency at the Ulster Hospital in Dundonald, which is our main hospital, looking like someone who was highly intoxicated —it looked like that, but it was not true. She was unable to walk in a straight line, and she struggled to remain upright. Just hours later, she was unable to walk or stand, and total paralysis set in over her whole body in a matter of hours. Obviously, that was incredibly worrying—not knowing what is wrong, but knowing that she could not blink. That gives hon. Members an idea of the complications.

It took several days for a diagnosis to come through, after discussions between the consultant specialist and researchers at Queen’s University Belfast, which does exceptional work in diagnosing and trying to find cures for rare diseases. My staff member recalls how, in the early days leading up to her diagnosis, there were discussions about MS or motor neurone disease, because doctors thought that her symptoms indicated that that was what was wrong. That was very frightening for her. Obviously, to think that she had either of those would be frightening enough, but when doctors looked, they realised that it was neither of them. Anyone would be desperate to know what on earth is happening to their body, and why they are unable to control any of their actions.

The good news is that the condition is rarely fatal—one of the few benefits. However, the most serious aspect is that patients can develop respiratory failure, and may require intubation in the intensive care unit. Awareness of rare conditions such as Miller Fisher syndrome needs increased focus, because it has a relatively sudden onset. It can happen very quickly, usually after pneumonia or a respiratory illness, which can trigger some of the problems. The patient does not know what is happening to them, other than that their body is suddenly grinding to a halt. They cannot walk, feel their hands or feet, swallow or see properly. It is as if their whole body is just shutting down; it is incredibly worrying.

Awareness and information is vital so that consultants may diagnose the condition faster and treatment can be administered. The advantage with MFS is that, once identified, it can be treated very effectively with immunoglobulin transfusions leading to a full recovery. A demyelinating condition such as Miller Fisher syndrome strikes without warning and is very frightening to experience; sufferers do not know what is happening, and they worry about what the future has in store for them.

It is vital that the Neurological Alliance Of Scotland, the Wales Neurological Alliance, and the Northern Ireland Neurological Charities Alliance are adequately resourced to collect the evidence and conduct the research needed to create real change throughout this United Kingdom of Great Britain and Northern Ireland. That way, there will be the support for the one in six people who experience rare neurological conditions such as Miller Fisher syndrome.

My question to the Minister is one that I often ask, but it is very important to do so. When it comes to research, what money are the Government setting aside for it? We are greatly encouraged by the money that is spent on research, but we want to see more—not for the sake of spending money but to find cures for diseases. When we look at the universities across the United Kingdom of Great Britain and Northern Ireland, Queen’s University in Belfast is one of the leading examples when it comes to trying to find cures for diseases. I know that is also replicated in Scotland, Wales and across the whole of England.

Another rare disease that I would like to raise awareness of is pemphigus. There are two major forms of pemphigus, and they are categorised based on the layer of skin where the blisters form and where the blisters are found on the body. The type of antibody that attacks the skin cells also helps to define the type of pemphigus. Pemphigus foliaceus is less common and only affects the skin. The blisters form in upper layers of the epidermis and may be itchy or painful. With pemphigus vulgaris, which is the most common type in the UK, blisters form in the mouth and other mucus surfaces, such as the nose and elsewhere, as well as on the skin. They develop within a deep layer of the epidermis and are often very painful.

Pemphigus vulgaris is by far the most common variant of pemphigus and even this type is rare, but it leaves lasting effects. We are discussing rare diseases that inhibit the ability to have a normal life—we are here to talk for those people. Cases of PV in the UK have been noted to be rising, and it is estimated to be found in 0.68 per 100,000 in the population. It is a rare disease that is unfortunately becoming a regular occurrence. The incidence of this strain is higher in women and in older age groups. Again, those are a category of people who need help now.

There was a time when PV was almost impossible to treat. Deaths were recorded as recently as 30 years ago, with a rate of 79% of sufferers dying within a year of diagnosis. That was before the advent of corticosteroids, which now effectively treat PV and bring it under control. There is an ethnic group aspect to the prevalence of PV; although it is seen in all races, it is noted to be found more frequently in Asian populations and in Ashkenazi Jews. PV may occur at any age, but is mostly seen in women between the ages of 30 and 70, and in adolescence girls are more often affected than boys. Again, we have moved forward and research has delivered. We should welcome the fact that a medication has been found that means that people do not die from it.

Pemphigus, like Miller Fisher syndrome, is associated with other autoimmune diseases and has been reported to have an association with myasthenia gravis. Normally, the immune system protects the body from infection and disease. At present, researchers do not know what causes the immune system to turn on the body’s own proteins. There is something wrong; we need to find out what it is. Evidence suggests that genetic and environmental factors may be involved. An environmental factor may trigger pemphigus in people who are at risk because of their genetic background. That is why it occurs more in those of an Asian background. In rare cases, pemphigus may be caused by a tumour or by certain medications that harm the body internally.

No one knows what causes pemphigus, but it is known that, like many other related diseases, there is a genetic fault at the start and a trigger, such as stress, another illness or a drug used to treat another condition, causes it to erupt. I use that word on purpose, because erupt is what it does—it comes on almost like a volcano and changes the person’s whole life. It is possible also these diseases tend to appear in later years because the immune system weakens with age.

A cure for these diseases is unavailable today, but they can be treated successfully. Remission can be achieved from pemphigus with either no ongoing treatment or a very small maintenance dose of the drug that manages it. Those are some of the steps forward. It is not cured, but the person can learn to live with it.

Support groups such as PEM Friends offer information and advice to people living with pemphigus. I ask the Minister to engage with PEM Friends, clinicians and researchers to gauge what steps can be taken to ensure proper funding is in place to address what can be a disfiguring disease and to work to find an effective cure. That is my second ask.

Rare diseases action plans have been published in Scotland, Wales and Northern Ireland. There is a framework in place, and I believe we can work better together on these matters. I said that at the beginning, and I still believe that. We can learn from each other, share what we have learned and all help each other across this great United Kingdom of Great Britain and Northern Ireland.

One in 17 people across the UK will be affected by a rare disease at some point in their lives, including approximately 110,000 people in Northern Ireland alone—wow, that is some figure! There is a large community that often feels lost, lonely, and isolated because of the rarity of their condition, which even their health professionals often have not heard of before. It is the nature of things that GPs do not know every rare disease.

The Northern Ireland Rare Diseases Partnership is a key stakeholder in the Northern Ireland rare diseases action plan. It highlighted its input into that important document, which could lead to great improvements for the Northern Ireland rare disease community. It stated that progress and work at speed are greatly hindered by the fact that that important action plan is unfunded. I ask the Minister: can discussions take place? Can we work together, fund the research together, and co-operate so that we all benefit from the research and the rare diseases action plans?

Let me leave Members with some statistics. Thirty per cent. of children diagnosed with a rare disease will not see their fifth birthday—just let that sink in. Rare diseases take an average of five years to diagnose, and only 5% of the 8,000 rare diseases have treatments.

Time is beating me. I have not raised the need for funding for Duchenne disease, including for research into the SMART suit. People will ask, “What’s a SMART suit?” Before I left my hotel, there was a mother on television telling her story. She is from London, I understand. Her son sang and played the guitar, but as he got older he unfortunately lost power in his arms. That lady was able to find someone to fund a solution: she got, I think, £1.25 million of lottery funding. The greatest wish of that wee boy of 14 was to play the guitar and sing at Woodstock. When someone loses upper body strength and function, they lose the ability to do the little things that are really the big things, like putting their hand up in class, feeding themselves and hugging their mum. However, a wearable device that will help to restore arm function—the SMART suit—is currently being developed, after being perfected by that lady for her son, with help from lottery funding and in conjunction with the University of Liverpool.

I have not been able to go into the plight of those with muscular dystrophy or even touch on Huntington’s disease. I will be in touch with the Minister separately to take those issues forward.

There is a common theme across a number of organisations that needs to be highlighted, as summarised by one of the bodies I have been in touch with, Takeda. Individuals and researchers from Takeda are in the Public Gallery today. First, there must be an improvement in the quality of care for people living with hereditary angioedema in order to bring UK standards in line with international best practice. A postcode lottery is sadly a reality for many, and I was pleased to hear thoughts on this at a meeting yesterday. With the quality of care determined by where a patient lives, variation continues across the HAE patient pathway.

Secondly, there must be an improvement in the time to diagnosis. The path to an accurate diagnosis can be a long and convoluted journey, which not only is an unpleasant and anxiety-inducing experience for a patient living with a rare disease or condition, but can delay access to the appropriate disease management, unnecessarily worsening the disease state. Unfortunately, it takes an average of 6.2 years to diagnose.

Thirdly, there must be an improvement in healthcare professional awareness. Rare diseases may present with multiple symptoms and healthcare professionals may not be familiar with a rare disease, which can lead to a lack of referral to the appropriate specialist. There is room for improvement for clinical professional awareness of HAE in all healthcare settings, particularly in A&E—just one example of where that extra focus is needed—so that patients presenting with acute and potentially life-threatening attacks can receive the most appropriate care when they need it most. If the Minister needs any more information, I am sure the organisation that is present would be more than happy to press for improvements through the Minister to make life better.

We also need an improvement in access to specialist care. Living with a rare disease often involves receiving complex care from multiple specialities. However, people living with HAE do not always have the access to specialists they need. I think we should make a plea for them. Some of them are here in the Public Gallery today, so it might be helpful to make a comment along those lines. That is particularly the case for access to psychologists, so that patients can manage the mental health impact of living with their condition. Very often, when it comes to physical problems, mental problems are not far behind. The pressure of life, deteriorating health and family, work and financial pressures all make a difference.

In addition, we need an improvement in access to treatment. Of the orphan medicines licensed in Europe between 2017 and 2020, only 71% are fully reimbursed through the NHS in England, and only 64% in Scotland. There are licensed treatment options aimed at minimising the number and the severity of HAE attacks, which can significantly improve quality of life and control of disease.

Looking at what can be done to help people with rare diseases is what today’s debate is about. We very much look forward to the response from the two shadows, the hon. Members for Enfield North and for Edinburgh North and Leith (Deidre Brock), and particularly from the Minister.

I understand that we cannot fund everything as we would like—if only we could—but there is more we can do. I urge us in this place, and the Minister, to do just that. We can make GPs more aware and ensure that there is training to recognise and cross-discipline information available to help to find that diagnosis. There are families who can be helped by knowing they are not alone; there are others going through the same thing, looking to connect. We can look at funding and deals with pharmaceutical companies; there are many out there who wish to help, and seek just that wee bit of encouragement and partnership with Government to take that forward. We must be determined to advance in any way we can. That is my desire, and I believe it is the desire of us all, including the Minister. We look to her, and to the Government, to lead the way on making progress with rare diseases.

I will conclude by saying that I believe we have something special here that we need to take forward. With that in mind, I hope that we can have good contributions from the shadow Ministers and my friend, the hon. Member for Blaydon, who chairs the APPG on rare, genetic and undiagnosed diseases. We look forward to the Minister’s response, because it will give encouragement to those who are here today.

15:25

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under you in the Chair, Mr Sharma. I congratulate my friend, the hon. Member for Strangford (Jim Shannon), on obtaining this really important debate. I want to talk about the rare disease action plan and other issues affecting rare diseases.

I was first introduced to the rare disease community when my constituent Barbara got in touch to discuss the difficulty she was having in accessing treatment for her son, who has phenylketonuria, or PKU. Thankfully, we were able last year to get access to the drug to treat PKU, sapropterin—thankfully, it is now a generic—in order to treat those who respond to it, and I am glad that we were able to do that. Since then, and with that experience, I have taken on the position of chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions. It has been an absolute joy to work with some incredibly resilient communities who face a range of complex and common challenges, despite the different symptoms, conditions and situations they face.

I want to give some context by setting out a few statistics, which may be familiar to some hon. Members. One in 17 people will be affected by a rare condition at some point in their life, which equates to around 3.5 million people in the UK. A rare condition is a condition that affects less than one in 2,000 people. There are over 7,000 rare conditions, as we have heard, and around 95% of people living with a rare condition have one of the 400 most common rare conditions. Some 80% of those conditions have an identified genetic origin, and 75% of rare conditions affect children. That sets the context: although rare diseases are individually rare, they actually affect a large proportion of the population.

The challenges facing people with a rare disease—and, let us not forget, their families—include waiting years for a correct diagnosis and, once they have a diagnosis, difficulties in accessing treatment and support. This is quite often due to a lack of awareness of rare conditions among healthcare professionals, a lack of licensed medical products to treat the conditions, and a lack of mental health support. In my dealings with the rare disease community and patient groups, I have certainly found that having a rare condition places huge strains on people and their families, and it really tests their mental health and wellbeing. More broadly, the lack of recognition leads to further problems in accessing a whole range of services, including education, social care and housing.

I will refer to issues that we need to look at further, some of which are touched on in the rare disease action plan, particularly the second version for England, which the Minister issued two weeks ago, on Rare Disease Day. First, I will talk about newborn screening, and specifically the issue of faster diagnosis. The UK could be doing more with newborn screening. The blood spot heel-prick test given to every newborn in the UK screens for a maximum of nine conditions, but many countries in Europe, and other parts of the world, screen for more than double that number.

Newborn screening is an absolutely vital tool in the light of new treatments being developed that can have a really life-changing impact if delivered pre-symptomatically. Take spinal muscular atrophy, a rare condition causing progressive muscle weakness and loss of movement due to muscle wasting. Without swift treatment, it is the leading genetic cause of infant death. Babies treated pre-symptomatically can experience life without symptoms, but once symptoms have developed, most infants with SMA will never walk independently. Many will need mechanical ventilation, nutritional support and continuous care.

Ten European countries and all but two US states have moved to approve SMA newborn screening, but we are yet to see progress on that in the UK. We have children born with SMA that is not identified at the earliest opportunity. Treatments are helpful only if they are used immediately, before symptoms develop. It is really important that we do that. There are other conditions that we believe could helpfully be screened for in the newborn heel-prick test. That would allow for the treatment of a number of conditions as children develop.

Unfortunately, due to the rare nature of some conditions, it can be challenging to develop a large body of evidence to support newborn screening for them, in the light of the high bar set by the UK National Screening Committee. As chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions, I know that Genetic Alliance, which provides our secretariat, has held discussions with a representative of the committee to look at the wider issue, not specifically SMA. I have recently been working with the all-party parliamentary group for muscular dystrophy and the rare disease community on an inquiry on newborn screening for SMA. Hearing the testimonies from families and clinicians, it is clear that there needs to be a change to the process in recognition of the difficulties inherent in making decisions about rare conditions, and the difference that a longer list of screened-for conditions could make.

I next want to mention care co-ordination, an issue that is tackled in the action plan. Due to the lifelong and complex nature of many rare conditions, people often need support from a wide range of healthcare professionals, from specialist hospital consultants to learning disability nurses, and a wide range of multidisciplinary services. Too often, we have found that the burden of organising care is left on individuals and their families, placing further strains on them.

For example, on Rare Disease Day, the APPG heard from Blessing, who was born with sickle cell anaemia. Blessing’s care was organised between London hospitals, and she often found herself having to personally update health and educational professionals on aspects of her condition and care. She spoke to us candidly about the emotional strain that placed on her and her parents, and how it affected her whole relationship with the healthcare system.

Unfortunately, on a visit during one of her episodes, Blessing went on to be diagnosed with a rare lymphoma in her early 20s. She described the change she experienced at that stage, and how she was supported through the experience by a care co-ordinator, who briefed her on everything she needed to know about accessing, for example, travel support, help to stay in work, and a social worker during treatment. That was through the identification of the cancer, and not through her rare disease. In Blessing’s words, she had never felt closer to a healthcare professional, despite having been in close contact with the healthcare system her whole life. That is not to undermine the impact the cancer diagnosis had on Blessing’s life, but to emphasise the importance of well-organised logistical support that bridges the gap between services.

A report from Genetic Alliance UK found that more than 90% of people living with rare conditions and their care givers have struggled with stress, anxiety and low mood, with many of them citing limited knowledge of their condition as a contributing factor. It is absolutely clear that care co-ordination, as well as the appropriate psychosocial support, is needed to support the rare disease community.

I want to talk about research and development, because there are still so many undiagnosed conditions—cases where there is clearly an issue, but no one can put a name to the condition. That is difficult for developing treatments and helping families. We know the impact that innovation in research and development can have on patients, as proven by the progress in treatments for conditions such as SMA and PKU. In November last year, I visited the Wellcome Centre for Mitochondrial Research, which is based in Newcastle University. I was blown away by the incredible and inspiring work they are doing. Mitochondrial disease, or mito, is the term for a group of medical disorders caused by faulty mitochondria, which generate about 90% of the energy that we need to live. These disorders can be serious or fatal. Furthermore, faults in mitochondria are the root cause of hundreds of other conditions, including cancer, Parkinson’s, epilepsy, dementia and strokes. One in 200 people in the UK carries a faulty mitochondrial gene. There is currently no cure, but great work is being done in Newcastle and other centres.

Newcastle’s Wellcome Centre for Mitochondrial Research team are internationally recognised world leaders in their field, with strong links to clinical practice, which is a distinctive part of their work. They work with patients to develop treatments and help them. Their dedication and contribution is a great source of pride for the north-east region, but investing in the research is critical to the success of the whole operation. Researchers such as the mito team in Newcastle often rely on short-term grants, making it difficult to build the long-term project that would deliver the seismic change that is needed. I urge the Government to extend their role in this field, and to place funding for rare disease research on a secure footing. I am glad to say that the leader of the centre and some of the representatives were able to speak briefly to the Minister when she came to our rare diseases reception.

The UK rare diseases framework is a good sign that we are making progress on raising awareness of the issues faced by the rare disease community, whether it be care co-ordination, faster diagnosis or licensing new medicines, but long-term funding and resource are needed if we are to realise the aspiration set out in the action plan. Committing to improving care for people with rare diseases means producing a tangible change in their day-to-day experience of the healthcare system and other services. I hope we can come together as parliamentarians to help realise this change.

I ask the Minister to keep up the pressure, through the action plan, so that we make the necessary changes, support people with rare diseases, and find cures and treatments. I ask the Minister to ensure that people with rare diseases have a faster diagnostic odyssey, as they call it, and to look again at continuity of care. The Minister might have seen the report produced by Genetic Alliance UK on Rare Disease Day, which sets out in more detail its findings on what needs to be done. That is one of the planks of the rare disease framework, and it is something on which we need to see action. We need to ensure, as the hon. Member for Strangford said, that there is access to new treatments. We need to do that via the innovative medicines fund, and I would be pleased to hear how that is progressing, because some people are feeling a bit frustrated with the situation.

We also need to ensure that the National Institute for Health and Care Excellence, which reviewed the methods last year, and has gone to a modular approach to reviewing its decision making—hopefully one that is more responsive to the needs of individual groups—keeps rare diseases at the forefront of the process.

15:40

[Deidre Brock (Edinburgh North and Leith) (SNP)]

It is a pleasure to serve under your chairship, Mr Sharma. I congratulate the hon. Member for Strangford (Jim Shannon) on securing this important debate. I was certainly not familiar with some of the details that we have heard today. I look forward to the Minister’s response.

A rare disease is defined as a condition that affects fewer than 1 in 2,000 people, but that statistic in isolation is misleading. It is estimated that over 412,000 people in Scotland have a rare disease—more than one in 10. Rare diseases might be individually rare, but collectively they are not uncommon. The hon. Member for Strangford reminded us that we must not look at the statistics simply as a series of numbers, because those numbers represent people and the family members around them—a very important point. He shared details of conditions that he is familiar with, and some that he is personally acquainted with through colleagues.

The hon. Member also spoke of the importance of the four nations working together. He will be pleased to hear that the Scottish Government worked closely with the other devolved bodies and the UK Government to produce the new UK rare diseases framework, which builds on the 2013 UK strategy for rare diseases. He is always an optimist, and he reminded us that there is hope, given the work being done on these issues. He brought our attention to the smart suit, which I had not been aware of. That sounds like a really positive development, so I look forward to hearing more about that and the differences it can make to the people who will be able to make use of it.

The hon. Member for Blaydon (Liz Twist), chair of the APPG on rare, genetic and undiagnosed conditions, spoke of the challenges for those with rare conditions, and described how they wait for years for a correct diagnosis. She spoke about the lack of recognition and diagnosis, which leads to further difficulties accessing vital support for housing and benefits—a really important point.

[Jim Shannon]

I thank the hon. Lady for making that point. I mentioned that it takes, on average, almost five years for a diagnosis. I am sure she will ask the Minister to get the diagnosis timescale reduced to a manageable period, because it is unacceptable to have to wait five years.

[Deidre Brock]

It is indeed unacceptable. I am sure the Minister will address that point. I thank the hon. Member for that intervention.

The hon. Member for Blaydon mentioned the emotional strain experienced by those with rare conditions and their families. Again, that was an important point. She also highlighted the need for longer-term funding for research and development. I hope the Minister will be able to give us good news on that front, because that is a crucial issue. Short-term funding dries up and leaves researchers high and dry when they could be progressing a method of addressing the conditions that people suffer from, which is what we would all like.

Rare Disease Day, marked on the last day of February each year, brings the rare disease community together to advocate with one voice, and to raise awareness of the impact of these often overlooked or unknown conditions, most of which do not have large advocacy groups or funding grants. Today marks an important opportunity to draw attention to them in Parliament, so I again congratulate the hon. Member for Strangford on securing the debate.

The long-term goal of the Rare Disease Day campaign is to achieve equitable access to diagnosis, treatment, health and social care, and social opportunity for people affected by a rare disease. As hon. Members have highlighted, rare diseases are often life-threatening or chronically debilitating, and can have a wide-ranging effect on a person’s life, impacting education, financial stability, mobility and mental health. As the hon. Member for Strangford said, 75% of rare diseases affect children, and more than 30% of children with a rare disease die before their fifth birthday—a tragic statistic that must strengthen our resolve to improve our knowledge, understanding and treatment of rare diseases.

As has been pointed out, for those living with a rare disease, a diagnosis is crucial to understanding how they can move forward with their life, treatment and prognosis. However, sadly it takes on average almost five years to receive an accurate diagnosis of a rare disease. It is therefore vital that all those living with a rare disease get the right diagnosis faster, and can access co-ordinated care and specialist treatment. That is a core objective in the Scottish Government’s rare disease action plan, published in December. It sets out how the Scottish Government will implement the priorities of the UK rare diseases framework. It was developed in close collaboration with the rare disease community to ensure that their needs are appropriately reflected across wider policy on, for example, mental health and social care.

The plan includes a number of objectives on ensuring that patients receive a faster diagnosis, including through genomic testing, which the Scottish Government are supporting through the implementation of the Genome UK strategy. The Scottish Strategic Network for Genomic Medicine was recently established to advise and make recommendations on genetic testing availability. It will also support the planning for future capacity in areas such as whole genome sequencing and expanding our whole exome sequencing services. Later this year, Scotland’s first ever genomics strategy will be published and backed by significant investment, with £5 million committed for 2022-23 alone.

As the hon. Member for Blaydon mentioned, newborn screening has a vital role in early diagnosis of some rare diseases and the initiation of early treatment to reduce complications. The Scottish Government are represented on the UK National Screening Committee, which makes its recommendations to all four health Departments across the UK. Through Scotland’s rare disease implementation group, those living with a rare disease will be involved in any future screening considerations, and given information so that they understand how screening impacts them and their families.

Another important commitment is the planned expansion of the Congenital Conditions and Rare Diseases Registration and Information Service for Scotland. That includes a national register that collects and holds information about babies in Scotland with a major structural or chromosomal condition or recognised syndrome. The register will be extended to collect and hold information on other rare diseases. Access to better data on rare diseases and making use of digital tools can help clinicians to make better informed decisions on care, prevent disease and allow better access to research and clinical trials. As has been mentioned, there are over 7,000 different rare diseases, so it is not possible for healthcare professionals to receive comprehensive training on every condition. It is therefore important that they are aware of rare diseases more broadly, and are more alert to considering them.

The Scottish Government are working with NHS Education for Scotland to embed more formal education about rare diseases in the training for healthcare professionals. In addition, information on rare diseases on NHS digital platforms will be improved, both for those diagnosed with a rare disease and for healthcare professionals.

Finally, the action plan sets out steps to improve the co-ordination of care, so that people living with rare diseases will have fewer wasted appointments, will benefit from the expertise that is available through multidisciplinary care, and will get care that is better tailored to their needs. That includes improving access to treatment and drugs, building on the ultra-orphan medicines pathway, which is improving access to medicines for rare and end-of-life conditions.

The Scottish Government are establishing a national care service to ensure that Scotland’s social care system consistently delivers high-quality services to benefit many people living with rare conditions. That is made possible by record funding of more than £19 billion for health and social care in the recent Scottish Budget, which represents more than £1 billion of new investment. I agree with the hon. Member for Strangford that it is imperative that we all continue to work across devolved and reserved areas to generate change for those living with rare diseases, their families and their carers. No one should be made to feel helpless or invisible because they have a rare disease.

15:50

[Feryal Clark (Enfield North) (Lab)]

It is a pleasure to serve under your chairmanship this afternoon, Mr Sharma. I start by paying tribute to the hon. Member for Strangford (Jim Shannon) for securing this debate today and for all the information he provided; I feel a lot more knowledgeable about the variety of rare conditions than I did before I came to the debate. He covered quite a lot of important statistics that we should all take notice of. I also pay tribute to my hon. Friend the Member for Blaydon (Liz Twist), chair of the all-party parliamentary group for rare, genetic and undiagnosed conditions, for her contribution.

As has been set out, a rare disease is generally considered as one that affects fewer than one in 2,000 people. While the occurrence of individual rare disease is low, it has been estimated that around 3.5 million people in the UK are living with one of the more than 7,000 rare diseases. The hon. Member for Strangford and my hon. Friend the Member for Blaydon both noted that 75% of these diseases affect children, and more than 30% of children with rare disease die before their fifth birthday. That is truly devastating.

With that in mind, I welcome the Government’s 2023 rare diseases action plan, but I have a few questions about the detail, starting with screening and early diagnosis. I was pleased to see the Government focus on that area in the action plan, which suggests that the NHS is exploring the implementation of whole genomic sequencing to screen for up to 200 rare genetic conditions in newborns. That is fantastic news.

Will the Minister clarify whether that scheme will be accepted and be implemented? As we have heard this afternoon, funding is a major issue in this area. If this plan is going to be implemented, will the Minister tell us how it will be funded? There is a lack of clarity in the action plan.

Early diagnosis can prevent and mitigate many of the complications associated with rare diseases. Therefore, it is imperative that such a scheme is made available as soon as possible. We heard from the hon. Member for Strangford on MFS, and from my hon. Friend the Member for Blaydon on SMA. If these conditions are diagnosed early on, while there may not be a cure, there can be treatment. That is why it is really important to get more information about this scheme as soon as possible.

The 2023 action plan also states that changes to the UK National Screening Committee have helped to improve how decisions are being made on newborn screening. Will the Minister clarify when those changes will come into effect and be actioned? I do not want to look back, but if we look back to 2021, the UK screened for just nine conditions—so hon. Members will understand why I was excited to see the 200 figure. We screened for only nine conditions in 2021, whereas Iceland and Italy screened for more than 40. Will the Minister update us on how many conditions are being screened for in the UK and whether the number has increased from nine since 2021?

Secondly, let me focus on workforce challenges in the rare disease action plan, which my hon. Friend the Member for Blaydon highlighted as one of the key areas for the rare diseases community. A recent survey by Rare Disease UK found that nearly half of all respondents did not feel that they were being given enough information or support about their condition and the care that they needed post diagnosis. It is clear that we need to scale up our wonderful healthcare professionals to equip them with skills and the awareness of rare diseases. For some people, as we have heard, it can take up to five years on average to get the correct diagnosis.

That brings me to the Lily Foundation story, which particularly touched me. I met Lily’s mother at one of the events organised by my hon. Friend the Member for Blaydon. Lily’s mother set up Lily’s Foundation, and it was a delight to speak to her. She is a part of the mitochondrial research campaign. Lily was diagnosed with mitochondrial disease when she was born in 2006; her mum said that the family felt shocked, isolated and devastated. They researched for information and support, but found none. There is no cure for mitochondrial disease—MD—and Lily sadly passed away when she was only eight months old. Although there is no cure, there is treatment, which focuses on relieving symptoms rather than treating them. According to NHS England, many aspects of MD can be prevented or helped by early diagnosis, before symptoms start to show.

The Government’s action plan states that it seeks to address the awareness of rare diseases by expanding digital educational resources on rare diseases for healthcare professionals. How will those programmes be delivered to healthcare professionals to ensure that we actually raise awareness? On the workforce, 7 million people are waiting for months—even years—for treatment, yet the Government cut the number of medical school places this summer. Given the need for an increased amount of care for rare disease patients, as well as more focused care, how do the Government plan to increase the number of available staff to support the aims of the 2023 action plan and wider strategy?

We heard a lot about the need for funding for research into rare diseases, and I want to focus on the Government’s £340 million innovative medicines fund. That was launched last year, and it is designed to provide for quicker access to the most advanced life-saving treatments. Why has it not yet been used? The Association of the British Pharmaceutical Industry has significant concerns that the design of the fund makes it difficult for companies to use. Will the Minister update us on whether the Government are addressing the industry’s concerns about the fund? If the fund is available, it should be used to find new treatments for rare diseases.

Finally, the indicators for measuring the success of the rare disease action plan have not yet been specified, so I would be grateful if the Minister set out when they will be specified. Without them, it will be impossible to assess whether care needs have been met or accurately measured by improvements in health outcomes.

This has been a great debate, and I thank both the hon. Member for Strangford and my hon. Friend the Member for Blaydon for continuing their campaign in this area. [Interruption.] Sorry, and the hon. Member for Edinburgh North and Leith (Deidre Brock)—I am slightly forgetful at the moment. I know that the Members present are determined to ensure that the voices of patients with rare diseases are heard, and that children and adults have access to the best knowledge, diagnosis and treatment available. I look forward to hearing from the Minister.

16:00

[The Minister for Social Care (Helen Whately)]

I thank the hon. Member for Strangford (Jim Shannon) for securing today’s important debate on rare diseases; it is always a great pleasure to debate these issues with him. He is so good at raising health issues that otherwise might not be talked about in this place. As he often does, he covered a huge range of things in his speech and very effectively brought the situation to life with personal stories of people he knows and patients. When he says to me that there is no pressure, I am not sure that he entirely means what he says, but he does it in an extremely friendly way.

As the Minister with oversight of rare diseases, among other things, in the Department for Health and Social Care, I welcome the pressure and the interest that the hon. Gentleman and other Members of Parliament have shown in this issue. He made the point, as did others, that rare diseases are rare but collectively common, especially among children, which, very sadly, leads to short lives for some. During the course of my speech I will mention many of the things that he raised this afternoon.

It was good to hear too from the hon. Member for Blaydon (Liz Twist), who is very effective in her role as chair of the APPG on rare, genetic and undiagnosed conditions. She spoke about some of the problems for people with rare diseases, including potentially waiting a long time for a diagnosis, the difficulty in accessing treatments, mental health challenges, and difficulties with co-ordination of care. She also mentioned the importance of the screening of research, and she spoke about access to the innovative medicines fund. Again, I shall pick up on several of those points this afternoon.

Just last week, on 28 February, we marked Rare Disease Day. On that day, we heard first-hand stories of the huge impact of rare diseases on people’s lives, and many of those stories have been echoed today. Some of the challenges facing people with rare diseases are unique and personal, but many others are shared by the 3.5 million people across the UK who make up this diverse and resilient community. The Government are committed to overcoming the challenges in order to secure a better future for all of those living with rare diseases.

The 2021 UK rare diseases framework embodies our commitment to this issue. The framework sets out our vision of how to improve the lives of people with rare diseases through four vital priorities: helping patients get a final diagnosis more quickly, increasing awareness among healthcare professionals, better co-ordination of care, and improving access to specialist care, treatments and drugs—many of the things that have been mentioned during the course of the debate.

The framework was established thanks to the National Conversation on Rare Diseases survey, which received thousands of responses from the rare diseases community about the issues that matter most—the same issues that we have heard about today. These continue to drive forward our focus on UK-wide improvements, putting patients’ voices at the heart of decision making and the policy development underpinning all our work.

To deliver on our ambition, all four nations have now published rare diseases action plans, which set out how they will deliver the aims of the framework in ways that work for the specific populations and healthcare systems of each nation. I was pleased to be able to publish England’s second rare diseases action plan last week, on Rare Disease Day. This publication allowed us to reflect on some of the progress made during the last year.

The hon. Member for Strangford raised the case of his colleague who developed Miller Fisher syndrome and the experience she faced in receiving a diagnosis. It sounded unbelievably frightening for her—going into hospital with those symptoms and the several days she spent waiting for a diagnosis, hearing people around her talking about all the possible things she might have. I was very glad that she was diagnosed, and I hope she has made a good recovery. That case demonstrates the known problem that rare diseases can be hard to diagnose.

In our latest action plan, we report on some of the progress made on diagnosing rare diseases. Genomics England has developed a clinical research interface, which has helped identify over 1,000 new complex diagnoses for people with rare diseases. One illustration of the real-world impact of those developments is the 19 new diagnoses of Rett syndrome in 2022. Rett syndrome is a debilitating rare condition found in children that can be complex to diagnose. Those new diagnoses have helped to explain symptoms and enabled children and their families to access care.

The hon. Member for Strangford also highlighted the need for awareness of rare diseases among healthcare professionals to avoid delayed diagnosis and treatment. Over the last year, we have also made progress in increasing awareness of rare diseases. For example, Health Education England has developed GeNotes, a set of innovative educational resources on genomics and rare diseases, which will help put information at the fingertips of healthcare professionals. We continue to take steps towards improving co-ordination of care—addressing the point that the hon. Member for Blaydon made—through the roll-out of a toolkit for virtual healthcare consultations. This helps people with complex, multi-system rare diseases access multiple specialists on one call without needing to travel.

On treatment, significant progress has been made in improving access to specialist care, treatment and drugs. The hon. Member for Strangford rightly highlighted the emerging potential of cell and gene therapies for treating some rare diseases. The innovative medicines fund was launched by NHS England and NICE, to fast-track the most promising, cutting-edge medicines to NHS patients. Together with the early access to medicines scheme and the innovative licensing and access pathway, this will support early access to novel treatments. I assure the hon. Member for Enfield North (Feryal Clark), who asked about it, that the innovative medicine fund is open for applications for treatments for rare diseases. We also continue to monitor access to high-cost treatments for rare diseases across England, taking steps to ensure equal access to treatment across the country.

As the many stories shared today have highlighted, there is still much more to do. That is why England's second action plan sets out 13 new commitments to ensure everyone living with a rare disease gets the treatment, care and support they need. That includes a greater emphasis on co-ordinated access to specialist health and social care, including mental health and special educational support. Again, that addresses some of the points made by the hon. Member for Blaydon.

The hon. Member for Strangford raised the impressive research that has led to the development of the smart suit, helping young people with Duchenne muscular dystrophy maintain the use of their arms. It is truly an exciting and wonderful thing to talk about. The 2023 action plan also emphasises the importance of research to translate scientific breakthroughs into cutting-edge diagnostics and treatments. In August, we announced £12 million of funding to support the UK rare disease research platform, which will accelerate the understanding, diagnosis and treatment of rare diseases. A £790 million investment from the National Institute for Health and Care Research in biomedical research centres will also support rare disease research.

[Jim Shannon]

I am very conscious, Minister, that my knowledge of that smart suit simply comes from watching BBC 1 before I left the hotel one morning. It was a mum who, on behalf of her 13 or 14-year-old son, managed to get lottery funding of £1.25 million. She was the lady who developed the smart suit; she is not just a mum, but obviously much more, as she was able to do that. The Minister may not know, but could she come back to us on whether, now that it has been developed and the plans for the smart suit are there, it is possible that other people with Duchenne muscular dystrophy could also take advantage of it?

[Helen Whately]

As the hon. Member described, it is fantastic that a mum who saw the problem and the opportunity came up with a way of helping. I will have to write to him to answer his question. I assure him, and everyone present, that we will take further steps to make it easier for the rare diseases community to participate in research. That is exactly the point. It is very important that those most affected—the individuals and their families—are involved in research and innovations, such as the one the hon. Gentleman described. We will continue to improve the use of securely held national datasets in research.

Our new plan seeks to reduce the health inequalities experienced by people living with rare conditions. The hon. Member for Strangford spoke of pemphigus vulgaris and its greater prevalence among some ethnic groups. That is one aspect of health disparities, but health disparities can be faced by all people living with a rare disease when they seek to access the services they need, and we aim to address that. Through NHS England’s Core20PLUS5 framework, we will help integrated care systems to address the health inequalities faced by people living with rare conditions.

Similar efforts are under way in all four nations of the UK. Although each nation is taking a distinct approach through its action plan to best meet the needs of its healthcare system and population, we continue to work closely across the four nations to ensure that we learn from each other.

I assure the hon. Member for Strangford that I share his views about the importance of co-operation across the UK on rare diseases. The rare diseases advisory group at NHS England has membership from all devolved nations to ensure that it identifies and seizes opportunities for collaboration. Patients can move between parts of the UK to access specialist services.

The hon. Member for Blaydon mentioned the newborn heel prick, or newborn blood spot screening programme, and asked whether we could screen for more conditions, specifically spinal muscular atrophy, or SMA. We test for more than 30 rare conditions during pregnancy and the newborn period, and nine conditions via newborn blood spot screening. There is a good reason why we screen for fewer conditions in the UK than in other countries: it is because we believe that we have a more rigorous approach to evaluating the benefits, and also potential harms, of screening than other countries.

The 2022 rare diseases action plan committed us to establishing a blood spot task group to further develop the evidence base for newborn blood spot screening. The UK National Screening Committee has since established the blood spot task group, which is working to improve the evidence available to the screening committee when considering the screening programmes to be added to the blood spot.

[Liz Twist]

Having had discussions with the newborn screening committee representative, I am aware of the concern that we do not want to go too far, and we want to be rigorous, but it does seem that, in comparison with many other countries, we are selling ourselves short. I am glad to hear about the taskforce, and I know that Genetic Alliance UK is represented on that, but there is real concern in the rare disease community that there are things that we could be testing for. We do not seem to be able to make progress. SMA is a classic case of that.

[Helen Whately]

I hear the hon. Lady’s concerns. There is clearly a level at which it would be inappropriate for me to get involved in such decisions, which are generally made by expert committees, but I am happy to look into her question further, and to write to her with what I find out.

I want to leave everyone present with a clear message: the Government are committed to addressing the challenges faced by the rare disease community. I understand that at times it can seem as though progress is not happening quickly enough. Nevertheless, we have seen real progress since the publication of the action plans, and I want us to go even further. With the continued support and partnership of the rare diseases community, for which I am immensely grateful, we will not only strive but succeed in doing better for those with rare diseases every single day.

16:14

[Jim Shannon]

May I say a big thank you to everyone for their contributions? I was greatly encouraged by them. The hon. Member for Blaydon (Liz Twist) understand the issues well and has great knowledge of rare diseases, which is why she is the chair of the APPG on rare, genetic and undiagnosed conditions. The heel prick seems a very simple solution, and the Minister said she is prepared to review that. We take encouragement from her response; that is something that could be done easily.

The hon. Lady also referred to care co-ordination for learning and physical disabilities, and she gave the example of her constituent, Blessing. Care is so important because the whole family is part of the package. She referred to R&D—we all did, because we all recognise its importance; so does the Minister, to be fair. The Government have committed £12 million to that, so that is good news.

The hon. Member for Edinburgh North and Leith (Deidre Brock) gave a Scottish perspective. We often hear that, and it is important, because we all see the great benefits of the four regions working together. We all included that in our speeches. She referred to the smart suit—it is incredible what one lady could do. She also referred to the Scottish genomics strategy and the financing for it. That is an example of where Scotland leads the way—other hon. Members will have to forgive me, but it often does. She referred to a national register for data—that is good. She is absolutely right that we need money set aside, an action plan and better co-ordinated care.

I thank the hon. Member for Enfield North (Feryal Clark) very much for her contribution. There is nothing wrong with her memory, by the way. She referred to early diagnosis, and she welcomed the 2023 rare disease action plan. Sometimes, if we cannot find a cure, we can at least make the person’s quality of life better. We sometimes have to settle for less to get more, and in that one sentence the hon. Lady summed up what we are all about. It would be great to have the cure every time; that is not possible, but it is possible to make lives better. I thank her for that. She also referred to the need to skill up the NHS, and she gave the example of her wee constituent Lily—we heard what happened to her, and we all think of her. The hon. Lady also referred to R&D.

Last but certainly not least, I thank the Minister so much. It is a pleasure to come to debates—I mean this honestly, not in a condescending way—when the Minister understands the issues really well and responds to the questions we ask. She said she will look at the heel prick blood test to ensure we can solve the problem. She came up with ideas about new diagnosis, new treatment, specialist care, gene therapy, the £12 million of extra money set aside for research, and mental health and education support. Those are the things that we all asked for, and they were all in the Minister’s speech.

I am a great believer in the Union. I say that honestly; I am not trying to be political. It is clear to me that the four regions could come together as one and do it in a way that we all benefit from. Every one of our constituents, in Scotland, Wales, England and Northern Ireland, can benefit from what is being done in other places. It is really good to have that on the record.

I thank the Minister, hon. Members and the audience in the Public Gallery. I also thank you, Mr Sharma, for the way you chair our meetings, and the Hansard staff, who are very sympathetic and patient with my language.

Question put and agreed to.

Resolved,

That this House has considered patients with rare diseases.

16:19

Sitting adjourned.