Patients with Rare Diseases

Liz Twist Excerpts

Thursday 9th March 2023 Westminster Hall

[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.

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[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.

National No Smoking Day

Liz Twist Excerpts

Thursday 9th March 2023 Westminster Hall

[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.

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[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.

Future of the NHS

Liz Twist Excerpts

Thursday 23rd February 2023 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

First, I congratulate my hon. Friend the Member for Jarrow (Kate Osborne), my constituency neighbour, on securing this debate, which is hugely important. I listened to the former Secretary of State for Health, the right hon. Member for West Suffolk (Matt Hancock), speaking about data and so forth, and there are clear points there, but I want to focus on the experience that my constituents, my family and my friends have of the NHS. Let me declare an interest in this debate as a Unison member and a former Unison health representative, which I am glad to say hugely informs my interactions on this subject.

There has never been a more urgent need to talk about our NHS. All of us from across the House regularly attend drop-ins with cancer charities and other medical charities, and they tell us about the situations that they face and the backlogs. We all make arguments about those things, but we cannot just see them in isolation: we cannot look just at cancer figures or mental health figures; we need to look at the NHS as a whole system and at how we can make it better.

I want to refer to some of the figures after 13 years of Tory Government. We know that satisfaction with the NHS is at a 25-year low of 36%. That is a drop from 70% in 2010, when Labour left government. Some 7.2 million people are waiting to start planned NHS treatment, which is nearly three times the figure when Labour left power. Before the pandemic, the number was already 4.6 million, so this is not just a covid-related issue, though covid clearly made things difficult—the figure was increasing anyway. Just 80% of patients with an urgent GP referral for suspected cancer saw a specialist within two weeks, which means that more than 42,000 people wait too long.

[Florence Eshalomi]

I thank my hon. Friend for making such a powerful speech, and I declare that I am also a proud member of Unison. Cancer Research UK recently held a drop-in session in Portcullis House, and I must say I was quite surprised to see the statistics for my constituency. We have a world-class hospital quite close to a world-class cancer treatment centre, but even in my constituency of Vauxhall over 300 people have missed the 14-day window and have been waiting longer. Does she not think that this is a big issue right across the country and something the Government need to get a grip on?

[Liz Twist]

I most certainly agree that that is a shocking figure. We need to make sure that we are really addressing all those issues very urgently. Those cancer waits are really important for what happens when undertaking treatment and the possibility of cure, so we really need to get on top of that.

When we look at accident and emergency, which has been much in the news, we see that 11,000 patients died after waiting more than 11 hours in A&E in 2021-22. The Government have just changed the target to 76% of patients waiting less than four hours in A&E by March next year, but we really need to return to the original target. Just changing the figures does not mean that people get better or that fewer people die; it means that the figures have been changed, and people understand that. My constituents know that.

More than 1.5 million people are waiting for key diagnostic tests such as MRIs, which is an increase of 95,500 from this time last year, whereas in May 2010 just 536,262—actually, that still sounds like a big figure—were waiting for key diagnostic tests. We need to get better, not worse, at doing these things.

One in seven people cannot get a GP appointment when they try to do so. All of us know, as constituency MPs, that one of the issues people consistently raise with us is that they are unable to get appointments in a timely fashion, so something that needs seeing to now is perhaps only seen to in a few weeks’ time. That is despite the really heroic efforts by a lot of our GP practices and surgeries, and the staff working in them, to try to make sure that people can get the advice they need when they need it. We know there is a shortage of GPs. Just in my constituency, people talk to me about that regularly. I regularly discuss with the NHS and with the new integrated care boards what is happening in that area, and things are really difficult for us at the moment.

At the same time, there are huge numbers of nursing vacancies in the NHS, with 47,000 posts unfilled, according to the latest figures. Some 40,000 nurses and 20,000 doctors left the NHS in the past year, and only 7,000 of those people retired. Surely, we must agree that patients need care and the NHS needs staff, and that it must be a priority to resolve this situation. That is why I am so pleased to see that Labour has a plan to address those workforce issues, because those workforce issues are at the heart of the difficulties within our NHS. It is not problems with NHS staff or that people are not working hard; they are working hard and, if anything, really becoming burnt out.

[Rob Roberts (Delyn) (Ind)]

I am delighted to hear that Labour has a plan. Would the hon. Lady please share it with the Health Minister in Wales? If Labour has a plan, it would be really good to have it in Wales, where Labour does not seem to have one at all.

[Liz Twist]

Well, I thank the hon. Member for that comment, but I will stick to my constituency in the north-east, if he does not mind.

As I was saying, this is not an issue with the staff themselves. The staff are working really hard and really down to the bone, and that is leading to the situation being made worse with people leaving or taking retirement. All of us will have friends and family who work in the NHS—certainly in the north-east, we have a huge number of people working in the NHS—and we see the strain on them, and on their faces, as they try to cope and deal with the issues they see day in and day out, so it is really important to address that.

[Alex Cunningham]

My hon. Friend and I were in a meeting earlier this week with the regional care board, and it told us that, in the north-east, we actually perform a little bit better on elective care. However, it also told us that the growth we can expect in the north of England is going to be much smaller than elsewhere in the country. Does that concern my hon. Friend as it does me?

[Liz Twist]

That certainly concerns me and, yes, my hon. Friend is absolutely right to say that. Actually, I would say that in the north-east we have really good and positive acute services, which are the ones he is talking about, thanks to the hard work of so many people, but what we lack is the preventive work and the work to avoid people becoming ill in the first place. We have the lower life expectancy and the health inequalities that my hon. Friend the Member for Jarrow talked about, so it is important to our people that we do that.

I was interested to hear the comments of the right hon. Member for West Suffolk on health inequalities. He is right to identify them, but what the Government have done is reduce the amount available to public health to address those issues before they develop. It is great that we have good hospitals and good-quality services, although they are really under pressure, but unless we address those public health issues and fund public health services, we are not going to tackle some of those issues.

The other aspect of that is social care. Once again, the Government have failed to tackle social care, and we know that one of the key things in tackling social care is getting people discharged from hospital, and getting them and supporting them to be independent at home. However, we really need a plan and to think some more about this. It may be a different Department—[Interruption.] No, it is the same Department now—sorry; my mistake—but we need to tackle that issue if we are going to make real progress.

I want to talk a little about mental health services. Many Members will know that I chair the all-party parliamentary group on suicide and self-harm prevention. We see the impact of a whole range of different policies, and the inability to access services. Too many mental health patients are forced to seek mental health treatment through emergency or crisis services. One in 10 ends up in A&E. We need to ensure adequate access to mental health services for both children and adults facing mental health crises.

[Jeremy Corbyn]

My hon. Friend makes an important point about isolation and mental health, particularly for teenage boys who, sadly, have the highest suicide rates. There has to be a reach-out and an understanding that overcrowding, poverty, bad housing and many other things contribute to mental health stress. It is not just a medical condition.

[Liz Twist]

It is absolutely right that socioeconomic factors have an impact on the number of suicides and lead people to suicide ideation. It is clear that mental health services for young people are struggling. People can be identified as having mental health problems, referred to child and adolescent mental health services and still not get the support they need for years. It is a difficult situation and something needs to be done. Mental health is an integral part of our NHS and needs to be dealt with effectively.

[Mrs Paulette Hamilton (Birmingham, Erdington) (Lab)]

My hon. Friend raises a valuable point. I am passionate about mental health, but at the moment we have no plan. The 10-year plan for mental health services and the way forward was abolished and nothing has been put in its place. Does my hon. Friend feel that that has contributed to the fact that we are seeing so many issues in our young people and elderly, and anxiety in our teenagers?

[Liz Twist]

I most certainly agree that there is a need for a mental health strategy. I have spoken to voluntary organisations that work in the field such as YoungMinds, which is concerned that young people put a huge amount of effort into commenting on the proposed mental health strategy, but that has now been subsumed in the wider health strategy that the Government talked about just a few weeks ago. There are real concerns from not just YoungMinds but many quarters that the mental health strategy will be lost in a wider mix. I hope that the Government will listen to that. YoungMinds engaged a huge number of young people to talk about this issue, and those people feel that their views are not being considered.

There are so many things that I could talk about but I will not, you will be pleased to hear, Madam Deputy Speaker. I want to confirm that our NHS is hugely valued by my constituents and everyone in the country. We need to ensure that it works well and effectively and that we have the staff that we need. I hope the Government will look at the workforce plan, because that is key to many of the issues we face. My constituents need the NHS, and we need it to work properly. I am glad that Labour has plans to do that in future.

NHS Strikes

Liz Twist Excerpts

Monday 6th February 2023 Commons Chamber

[Will Quince]

I thank the hon. Lady for her question, but nothing could be further from the truth. We accepted the independent pay review body’s recommendation of an average of 4.75% in full. That is over and above a 3% pay award last year, when the rest of the public sector saw a freeze. The hon. Lady, like me, will have lots of other public sector workers, and indeed private sector workers, in her constituency who will also earn between £30,000 and £50,000 a year. They will also have seen pay awards this year of between 4% and 6%, but they will not have 20% pension contributions or up to 33 days of annual leave a year. We have to keep these things in context, and any award also has to be fair to taxpayers more broadly, which is why we have an independent pay review body process. I want to address many of the issues that the hon. Lady has raised. We have that process; it is important that we use it, and I hope that the unions and others, including providers, will engage with it.

[Liz Twist (Blaydon) (Lab)]

Our NHS staff—all of them—saw us through the pandemic, many without proper protective equipment. They have now seen us through the catch-up exercise, and they are working hard, but they are at the end of their tether. Meanwhile, the Minister says there is no money, but the Government wasted £15 billion on personal protective equipment—money that could have given everyone a 20% pay rise. Is it not time that the Government understood the issues in this strike, got around the table and talked about pay to the nursing unions?

[Will Quince]

First, let me correct what the hon. Lady said about PPE. I was not a Health Minister at the time, but let us not forget that 97% of all PPE was usable. Despite being a Minister in another Department, I remember that those on the Opposition Front Bench rightly agitated on this issue, saying, “Do anything, strain every sinew and take a risk, but make sure you get PPE as quickly as possible.” It was the most desired global commodity, and Governments around the world were fighting for it.

Nevertheless, the hon. Lady raised a good point, and of course NHS staff got us through the pandemic. That is exactly why we accepted the independent pay review body recommendation in full. It is exactly why we accepted the recommendation last year of a 3% award when the wider public sector was frozen. Of course we value all those who work in our NHS, and that is exactly why have to get this right for the next independent pay review body. That is why we have to ensure that not just the Government but the unions, providers and others give evidence to that body.

Cystic Fibrosis: Living Costs

Liz Twist Excerpts

Thursday 2nd February 2023 Westminster Hall

[Jim Shannon]

The hon. Gentleman has summed it up in that one sentence. I said when he made his maiden speech last week that his contributions will add much to this House. That is one of them, and I thank him for it. I wholeheartedly support him.

I again ask the Minister—she knows these requests, because I have made her Department aware of them—to remove VAT on energy bills. That is important for people with CF because, at a time when energy bills are already astronomical, the median energy bill for an adult with CF is £26 higher every month than for typical households. For parents of children with CF, the figure rises to £36, because they do more and keep more heat in the house for their children. Adults can sometimes bear with it a wee bit, but there is still a cost factor.

[Liz Twist (Blaydon) (Lab)]

The hon. Gentleman is making an excellent speech. Does he agree that it is really important that people with lung conditions have the right environment at home and the right heating? The additional costs, especially given the rising energy costs, mean that we must take care of those people who need extra heat. That applies especially to people with CF.

[Jim Shannon]

The hon. Lady is absolutely right. I thank her for her contributions on this subject. She brings much knowledge to these debates. I am pleased to be a member of the all-party parliamentary group for respiratory health with her. We work with others to ensure that we can pursue matters, and today we are pursuing this matter for our constituents.

Oral Answers to Questions

Liz Twist Excerpts

Tuesday 24th January 2023 Commons Chamber

[Steve Barclay]

I do agree. That is why the long-term plan signalled the importance of mental health and the parity of which my hon. Friend speaks. It is also why, as the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Lewes (Maria Caulfield), has said, additional funding is being targeted at mental health—the extra £2.3 billion a year from 2024—signalling this Government’s commitment to mental health, as he will have seen with the announcement on mental health ambulances this week.

[Liz Twist (Blaydon) (Lab)]

T10. Suicide rates in England are as high now as they were 20 years ago, yet the written ministerial statement today simply says that a strategy will be published later this year. Saving deaths by suicide cannot wait. When exactly will the suicide prevention strategy be produced?

[Steve Barclay]

What we have signalled, and I agree with the hon. Member on this, is the importance of the suicide prevention plan. It is something my predecessor, my right hon. Friend the Member for Bromsgrove (Sajid Javid), highlighted. I am keen to work with him and Members across the House on that. I set out in the written ministerial statement today not a specific date, but our commitment to a bespoke plan, and I am very happy to work with her and other Members on that.

Huntington’s Disease

Liz Twist Excerpts

Wednesday 9th November 2022 Westminster Hall

[Hilary Benn]

I am extremely grateful to the right hon. Gentleman for making that point; he anticipates my argument exactly. I and many other people think that is exactly what ought to happen for the very reasons he set out.

What needs to be done and how can the Minister help? That is why we are here today. First, we have to raise awareness of the impact of the disease and the suffering of those with it and their families. By acknowledging what it is and talking about it, we can help families who all too often choose the path of silence and shame because they do not want to talk about it to anybody else. We should say with one voice that no one should have to carry this burden alone.

Secondly, families need more support, including financial help and better care. There is some wonderful expertise in hospitals and a number of centres of excellence throughout the United Kingdom, including the Huntington’s Disease Centre at University College London, but outside those specialist centres it is a different story. At the moment, it is hit or miss; it was put to me recently that it is more miss than hit in areas without specialist support. Social care is of course vital to help those with Huntington’s to manage day-to-day life. The cost of private care for someone with Huntington’s can amount to thousands of pounds a week—who can afford that? Some councils provide specialist care homes, but not all.

Let us begin by having a care co-ordinator—a Huntington’s disease specialist—in every community to help to identify and keep in regular contact with Huntington’s families in their area and guide them through the range of support that they need to meet their requirements. They would also help to improve understanding of the disease on the part of other health and social care professionals. It is hugely complex, and how it presents itself and the sheer scale of support that sufferers require are much misunderstood.

[Liz Twist (Blaydon) (Lab)]

I thank my right hon. Friend for securing this debate. As the chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions, I am glad this issue is being discussed. He has powerfully explained the difficulties. According to a Genetic Alliance UK survey, 71% of those with rare diseases co-ordinate their own care, and that is often the case for people with Huntington’s. Does he agree that it is really important that framework priority 3 of the rare diseases framework is used effectively to improve the co-ordination of care and make the situation much better?

[Hilary Benn]

I agree completely with my hon. Friend and congratulate her on her work chairing that all-party group.

There is a need for a Huntington’s disease clinical lead in every area, which is not the case currently. We need consultants in psychiatry, genetics or neurology who can run clinics in collaboration with a local care co-ordinator or Huntington’s disease specialist. As my hon. Friend identified, in the absence of that, carers carry a heavy load. Let me read what another person wrote to me:

“We learn to be our loved one’s nurse, dietitian, speech and language therapist, risk assessor, health impact assessor, cognitive ability trainer, physiotherapist, medicine dispenser, advocate and care manager, amongst many other things.”

That is one carer talking about their experiences. Those words reflect the fact that access to the right support is limited and varies across the UK, even though we have had commitments in the past decade, including the UK rare diseases framework in January last year.

Thirdly, we need better access to mental health services and support. I asked the Secretary of State for Health and Social Care about this in a recent written parliamentary question, and the answer said:

“Access to mental health services is based on clinical need, including for people with organic brain disorders such as Huntington’s disease.”

I must tell the Minister that I have been advised by the Huntington’s Disease Association that some mental health trusts exclude people with organic brain disorders, regardless of their presenting symptoms. If that is the case—I am sure the Minister will check after the debate—such practice would be at odds with what I was told in that answer. If that is the case, it cannot be right, because patients who experience mental health problems—those who are, for example, profoundly depressed or suicidal—need help regardless of the reason for their experiencing those symptoms. We need good support everywhere.

Fourthly, to come on to the point raised by the right hon. Member for Ludlow (Philip Dunne), we need NICE to produce specific guidelines on the treatment of Huntington’s disease, because there are currently none; that is in marked contrast to the situation for motor neurone disease, Parkinson’s disease, multiple sclerosis and epilepsy, for which there are NICE guidelines that have helped to improve treatment. Scotland already has a national care framework for Huntington’s, which was developed by the Scottish Huntington’s Association and funded by the Scottish Government. It makes clear that all NHS boards must have a Huntington’s clinical lead and an adequate number of Huntington’s specialists to support the local community. I am told that the majority of boards, although not yet all, now have such posts.

Formally setting out the needs of Huntington’s families for all to see in NICE guidelines would surely be beneficial to the whole UK. I anticipate that the Minister will probably argue, in response, that

“There are no current plans for the National Institute for Health and Care Excellence to develop a guideline on Huntington’s disease”,

and that

“NHS England is developing a neuropsychiatry service specification”.

I say that because that is what she said to me this week in answer to another of my written parliamentary questions. If that is still the Government’s position, I urge the Minister to think again.

Huntington’s disease is not just about neuropsychiatry. It is frankly so unique, it has such a complex range of symptoms and the challenges that it presents are so difficult, that all the UK’s Huntington’s disease organisations together believe—and I agree with them—that there is an overwhelmingly strong case for the development of NICE guidance on Huntington’s that can support the care and management of patients and help to avoid the unwarranted variation in diagnosis and care that currently occurs. Apart from anything else, there are many clinicians and nurses who, on first encountering someone with Huntington’s disease, have to admit that they know absolutely nothing about it—they have never seen it before. That is another powerful argument for NICE guidelines: they would set an expected standard and be backed up by NHS England, and sufferers and their families could draw attention to them if the services offered in their community fell short.

Fifthly, there is a specific issue related to our armed forces. Those who are known to be carriers of the gene are normally graded medically unfit for service, as are candidates with a proven immediate family history of the condition, unless they are known, as the result of a genetic test, not to carry the gene. By contrast, I am advised that some individual police forces do recruit candidates with the gene, but ask them to undergo a yearly meeting with a neurologist and have an MRI scan as a form of MOT.

I was encouraged by the answer to my written question to the Secretary of State for Defence, because it said:

“If there is clear evidence that a candidate is unlikely to develop Huntington's disease during a Service career”—

that can be as short as eight or 10 years, although it can be longer—

“then they may, on a case by case basis, be considered medical fit for service.”

I ask the Minister simply to pass on my words to the Defence Secretary, in the hope that young people in particular aged 16, 17 and 18 who have always dreamed of a military career will have the chance to fulfil their dreams.

The final thing I want to raise is research. Recently, we have seen the development of covid vaccines. We remember how antiretrovirals were created and turned HIV from a terminal illness into a disease that can be lived with. Science, as we know, has an astonishing capacity to change lives. As I said earlier, there is currently no treatment for Huntington’s, but scientists have identified the gene, and that leads some people to argue that Huntington’s is—this is a wonderful phrase—the most curable of the incurable diseases. That is why lots of research is going on—because the gene is known—and about eight or nine pharmaceutical companies are involved.

The disease is caused by a faulty protein, and Huntington’s-lowering drugs, as I think they are called, aim to tell cells, “Make less of that.” That is sometimes referred to as gene silencing. There have been drug trials, including the Roche GENERATION-HD1 study, and the UK trial sites included Leeds—where my constituency is—Glasgow, Aberdeen and Cardiff. Unfortunately, last year that trial was halted, which was a terrible shock to the global Huntington’s community. However, the treatment that was being tested is to be investigated in a new trial with a different cohort of patients, and other trials are looking at easing the impact on cognitive impairment. Yes, there have been setbacks, but there will be further trials. Other scientists, with very powerful microscopes, are peering at the make- up of the sticky proteins—if I may use that phrase—that seem to be associated with this disease, but also with Alzheimer’s disease and Parkinson’s disease.

I thank all the scientists who are searching for ways of lessening the impact of this awful disease and, ultimately, for a cure, as well as all those who participate in the trials, because, when a treatment does come, we will remember them as the pioneers who made it happen. I am sure that the Minister and all of us here today offer our best wishes to the scientists and researchers, hope they have every success on their journey and want to encourage them—including, where necessary, by providing more funding—in order to speed us towards the extraordinary day, which the scientists are confident will eventually come, when the awful shadow of this disease can be lifted from those who feel so helpless today. Until that day dawns, we must unite in our resolve to ensure that the families and their loved ones who have this appalling disease visited upon them have the support they need and deserve, regardless of where they live in our United Kingdom.

Smokefree 2030

Liz Twist Excerpts

Thursday 3rd November 2022 Commons Chamber

[Bob Blackman (Harrow East) (Con)]

[R]: I beg to move,

That this House has considered the recommendations of the Khan review: Making smoking obsolete, the independent review into smokefree 2030 policies, by Dr Javed Khan, published on 9 June 2022; and calls upon His Majesty’s Government to publish a new Tobacco Control Plan by the end of 2022, in order to deliver the smokefree 2030 ambition.

I thank the Backbench Business Committee, on which I have the honour to serve, for enabling us to have the debate this afternoon. On behalf of the all-party parliamentary group on smoking and health, which I chair, I welcome the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Harborough (Neil O'Brien), to his new role as public health and primary care Minister. The all-party group has a long track record of acting as a critical friend to the Government on this agenda and I am confident that that collaborative and constructive approach will continue.

May I take the opportunity to commend the hon. Member for City of Durham (Mary Kelly Foy), who co-sponsored the debate application with me but is not able to be here today? She is currently recuperating from a stay in hospital. I am sure that the whole House wishes her a speedy recovery.

The all-party group originally proposed the debate before the summer recess to ensure that Parliament had the opportunity to scrutinise the independent review by Javed Khan OBE, “Making smoking obsolete”. When the Secretary of State—well, the then Secretary of State, my right hon. Friend the Member for Bromsgrove (Sajid Javid)—announced the Khan review in February, he said that it would

“assess the options to be taken forward in the new Tobacco Control Plan, which will be published later this year.”

We have since had several changes of Health Ministers and Secretaries of State, but it should not be forgotten that a new tobacco control plan was first promised in 2021.

Achieving the Government’s smokefree 2030 ambition and making smoking obsolete is vital to the health and wellbeing of our entire population. It will also help to deliver economic growth, because smoking increases sickness, absenteeism and disability. The total public finance cost of smoking is twice that of the excise taxes that tobacco brings into the Exchequer. Each year, many tens of thousands of people die prematurely from smoking, and 30 times as many as those who die are suffering from serious illnesses caused by smoking, which cost the NHS and our social care system billions of pounds every single year.

Javed Khan’s review, which was published in June, concluded that, to achieve the smokefree 2030 ambition, the Government would need to go further and faster. He made four recommendations that he said were critical must-dos for the Government, underpinned by a number of more detailed interventions. I will concentrate on the four main recommendations, given time.

The four must-dos were: increasing investment by £125 million a year to fund the measures needed to deliver smokefree 2030; raising the age of sale to stop young people from starting to smoke; promoting vaping as an effective tool to help people to quit smoking tobacco, while strengthening regulation to prevent children and young people from taking up vaping; and prevention to become part of the NHS’s DNA and the NHS committing to invest to save. Since then, we have had conflicting reports about whether the Government intend to publish a new plan at all. That has been deeply concerning to me and others who support the ambition and want to see it realised. To abandon, delay or water down our tobacco strategy would be hugely counterproductive when the Government are trying to reduce NHS waiting lists, grow the economy and level up society.

As well as increasing funding, Khan recommended enhanced regulation. Both of those are supported by the majority of voters for all political parties, and the results of a survey published just this week show that tobacco retailers share that view as well. I therefore commend the “Regulation is not a dirty word” report by ASH—Action on Smoking and Health—to the Minister. It shows that most shopkeepers support existing tobacco laws and want the Government to go further in protecting people’s health. Retailers want tougher regulations—that is what they think will be good for business—and not deregulation.

There is no time to be lost. When the ambition was announced, we had 11 years to deliver it. Now, we have less than eight years, and we are nowhere near achieving our ambition, particularly for our more disadvantaged communities with the highest rates of smoking. Research cited in the Khan review estimates that it will take until 2047 for the smoking rates in disadvantaged communities to reach the smokefree ambition of 5% or less. Will the Minister put on record his commitment that the Government, having considered the Khan review recommendations, will publish a new tobacco control plan by the end of 2022 to deliver the smokefree 2030 ambition?

As Javed Khan made clear with his leading recommendation, smokefree 2030 cannot be delivered on the cheap. However, public health interventions such as smoking cessation cost three to four times less than NHS treatment for each additional year of good health achieved in the population. Yet that is where the cuts have fallen to date. The public health grant fell by a quarter in real terms between 2015 and 2021, and funding for tobacco control fell by a third, while NHS spending continues to grow in real terms.

Last week, London launched its tobacco alliance with a vision to deliver the smokefree 2030 ambition across London. Cabinet members for health and wellbeing from across London are writing to the new Secretary of State to make clear their commitment to achieve the ambition and pleading for the funding they need to deliver it. Before I became the MP for Harrow East, I was a councillor in the London Borough of Brent for 24 years, so I am well aware of what local authorities want to do on tobacco, but they lack the resources they need so to do.

Javed Khan called on the Government to urgently invest an additional £125 million a year in a comprehensive programme, including funding for regional activity such as that proposed in the capital. His recommendation was that, if the Government could not find the funding from existing resources, they should look at alternatives such as a corporation tax surcharge—a windfall tax—and a “polluter pays” tax. Banks and energy companies have been made subject to windfall taxes, so why not the tobacco manufacturers, who make eye-wateringly high profits from products that kill many tens of thousands of people every year? Four manufacturers, who are collectively known as “big tobacco”—British American Tobacco, Imperial Brands, Japan Tobacco International and Philip Morris International—are responsible for 95% of UK tobacco sales and the same proportion of deaths. For every person their products kill, it is estimated that 30 times as many suffer from serious smoking-related diseases, cancers, and cardiovascular and lung diseases caused directly by smoking.

A windfall tax could be implemented immediately through the Finance Bill. Experts on tobacco industry finances from the University of Bath have estimated that that could raise about £74 million annually from big tobacco. However, that is much less than the hundreds of millions in profits that big tobacco makes annually, because it would be a surcharge on corporation tax paid in the UK and tobacco manufacturers, just like the oil companies, are very good at minimising corporation taxes paid in the UK. For example, Imperial Tobacco, which is responsible for a third of the UK tobacco market, received £35 million more in corporation tax refunds than it actually paid in tax between 2009 and 2016. In contrast, a polluter pays levy would take a bit longer to implement, but it could be designed to prevent big tobacco from gaming the system as it currently does with corporation tax.

The polluter pays model we propose enables the Government to limit the ability of manufacturers to profit from smokers while protecting Government excise tax revenues, so it is a win-win for the Government and for smokers. Unlike corporation taxes, which are based on reported profits and can be—and indeed are—evaded, the levy would be based on sales volumes, as is the case in America, where a similar scheme already operates. Sales volumes are much easier for the Government to monitor and much harder for companies to misrepresent.

The scheme is modelled on the pharmaceutical price regulation scheme—the PPRS—which has been in operation for over 40 years and is overseen by the Department of Health and Social Care. The Department already has teams of analysts with the skills to administer a scheme for cigarettes, which would be a much simpler product to administer than pharmaceutical medicines. Implementing a levy would not require a new quango to be set up, as the Department has all the expertise needed to both supervise the scheme and allocate the funds.

Despite paying little corporation tax, the big four tobacco companies make around 50% operating profit margins in the UK, far more than any other consumer industry. Imperial Tobacco is the most profitable, with around a 40% market share in the UK. It made an operating profit margin of over 70% in 2021. Why should an industry, whose products kill when used as intended, be allowed to make such excessive profits, when 10% is the average return for business? The polluter pays model caps manufacturers’ profits on sales and could raise £700 million per year, which is nearly 10 times as much as a windfall tax.

Amendments to the Health and Social Care Bill calling for a consultation on such a levy were passed in the other place. Health Ministers were sympathetic, but the Treasury was opposed so they were reversed when the Bill came back to this place to be considered. However, that was before the Government knew they had a fiscal hole of around £40 billion that had to be filled. The £700 million from tobacco manufacturers would more than provide the £125 million additional funding that Khan estimated was needed for tobacco control. That would leave £575 million a year that could be used for other purposes, perhaps even for other prevention and public health measures which otherwise in the present economic climate are unlikely to secure funding.

The polluter pays principle has been accepted by Conservative Governments in areas such as the landfill levy, the tax on sugar in soft drinks and requiring developers to pay for the costs of remediating building safety defects. The Government promised to consider a polluter pays approach to funding tobacco control in the prevention Green Paper in 2019. Surely, we can now put it into practice.

[Liz Twist (Blaydon) (Lab)]

The hon. Gentleman will know that in the north-east smoking remains the leading cause of death, as well as of inequalities in healthy life expectancy. The all-party group has come forward with the polluter pays model, which is really important, and I ask the Government to consider it again as a means of funding the essential work on stopping smoking.

[Bob Blackman]

I thank the hon. Lady for her intervention. Clearly, there is a difference in smoking rates across the country, and we need to ensure that that is addressed. I will come on to that in my speech in a few moments.

We need the levy to be introduced, so will the Minister commit to investigating the feasibility of a windfall tax, backed up by a polluter pays levy, to provide the funding needed to deliver smokefree 2030?

I want to talk about the need to protect generations to come. The Government are set to miss the ambition, set in the 2017 tobacco control plan, to reduce SATOD— smoking status at time of delivery—rates to 6% by 2022. Currently, 9.1% of women, or about 50,000 women a year, smoke during pregnancy. Smoking during pregnancy is the leading modifiable risk factor for poor birth outcomes, including stillbirth, miscarriage and pre-term birth. Children born to parents who smoke are more likely to develop health problems, including respiratory conditions, learning difficulties and diabetes, and they are more likely to grow up to be smokers. Reducing rates of maternal smoking would contribute directly to the national ambition to halve stillbirth and neonatal mortality by 2025.

Younger women from the most deprived backgrounds are the most likely to smoke and be exposed to second-hand smoke during pregnancy. Rates of smoking in early pregnancy are five times higher among the most deprived areas than the least deprived. That contributes to this group having very significantly higher rates of infant mortality than the general population. As such, if we can drive down rates of smoking in younger, more deprived groups we will then have a rapid impact on rates of smoking in pregnancy. Two thirds of those who try smoking go on to become regular smokers, only a third of whom succeed in quitting during their lifetime. Experimentation is very rare after the age of 21, so the more we can do to prevent exposure and access to tobacco before this age, the more young people we can stop from being locked into a deadly addiction.

If England is to be smoke free by 2030 we need to stop people from starting smoking at the most susceptible ages, when they are adolescents and young adults, and not just help them quit once they are addicted. The all-party group, which I chair, has called on the Government to consult on raising the age of sale for tobacco to 21, which, when implemented in the US, reduced smoking in young adults by 30%. This is a radical measure, but one that is supported by the evidence and by the majority of voters for all political parties, retailers and young people themselves. It would have a huge impact on reducing smoking rates among young mothers, who are more likely than older women to smoke. It would also reduce rates among young men, so reducing the exposure of young pregnant women to second-hand smoke throughout their pregnancy. If men smoke it makes it harder for pregnant women and new mums to quit smoking, and makes it more likely that mother and baby will be exposed to harmful second-hand smoke. Will the Minister consider committing to a consultation on raising the age of sale for tobacco, as supported by both the public and tobacco retailers?

Finally, I want to warn the Minister about the Institute of Economic Affairs’ alternative smokefree 2030 plan, which popped into my inbox yesterday. The IEA’s plan is an alternative that is entirely in the interests of the industry, which is hardly surprising given the funding the IEA has received from big tobacco. The IEA itself refuses to be transparent about its funding, but through leaked documents it has been exposed as being funded by the tobacco industry for many years. I am sure the Minister is aware that the UK Government are required, under article 5.3 of the international tobacco treaty, the World Health Organisation framework convention on tobacco control, to protect public health from the

“commercial and other vested interests of the tobacco industry”.

The guidelines to article 5.3, which the UK has adopted, spell out that that includes organisations and individuals that work to further the interests of the tobacco industry, which includes industry funded organisations such as the IEA and the UK Vaping Industry Association.

I look forward to hearing contributions from across the House. I hope my hon. Friend the Minister will echo the words of his predecessors in his new role and restate for the record on the Floor of the House the Government’s commitment to complying with article 5.3. I hope he will state that on his watch the Government will continue to prevent the tobacco industry-funded organisations from influencing tobacco control policy.

--- Later in debate ---

[Liz Twist]

My hon. Friend is speaking powerfully about the experience in the north-east and nationally. He will be aware that, between 2007 and 2019, when the Government led the way in introducing tough new regulations, our smoking rates declined far faster than in the rest of Europe and most of the world, but that has dropped off, so we need to take further action. Is he aware of this recent research into smoking habits? University College London’s smoking toolkit study has surveyed smokers’ behaviour monthly since 2006. After years of steady decline in adult smoking—the proportion went from 24.1% in 2006, as he said, to 14.8% in 2020—smoking rates have stagnated, standing at 14.9% as we reach the end of 2022. Worse still, although the uptake of smoking among young adults declined year on year from 2007, that started rising again after 2019.

[Alex Cunningham]

I am grateful to my hon. Friend; I was not aware of some of the research to which she referred. However, the reduction in smoking has plateaued in recent times, and that is lamentable. I have a big enough heart to say that the Conservative Government have done much over the years to reduce smoking, building on much of what the Labour Government did between 1997 and 2010, but we cannot allow ourselves to stop there. We need to do so much more.

There are often arguments—many of which are put forward by front organisations funded by the tobacco industry—that further smoking regulation would be the “nail in the coffin” for small businesses, but that is not so. As the hon. Member for Harrow East mentioned, a recent survey commissioned by Action on Smoking and Health found that small tobacco retailers in the UK support further measures to reduce the harm of tobacco, including increasing the age of sale from 18 to 21, mandating a licence to sell tobacco and requiring tobacco companies to pay for services to help smokers to quit. John McClurey, a retired local retailer from Newcastle said, “Tobacco is a burden” to small businesses. The Government could help to lift that burden and charge the tobacco companies to do so.

In my last speech on smoking in Westminster Hall, I again stressed the need for a levy on the tobacco companies, but Ministers were reluctant. The new Minister will want to take action in this space. As we all know, cash will be tight and the Budget in two weeks’ time will be difficult, so he can earn himself brownie points by requiring the industry that makes billions in profits while killing our people to pay up instead. It needs to pay, because more than 4,000 people died prematurely from smoking in the north-east alone last year, with 30 times as many suffering disease and disability caused by smoking.

Going hand in hand with the personal suffering caused by smoking is the economic cost to our already disadvantaged communities. In their election manifesto, the Government claimed:

“We are committed to reducing health inequality.”

Why, then, are there such pronounced inequalities? In the north-east, 42% of smoking households are in poverty and tobacco spending accounts for a higher share of gross disposable household income per head than in any other UK region or nation. Please do not give me the argument that if people are poor, they should give up their fags. Smoking is an addiction and they need help to quit. Ending smoking in such communities would not just benefit the health and wellbeing of individuals but inject money into local economies that was previously going up in smoke.

The Minister will know that, at the current rate of decline, poorer communities risk being left behind as we move towards the hoped-for smokefree 2030. It will not happen in the communities to which I have referred without robust action. Most of the quitting has been done by people from better-off communities, and the benefits have largely accrued to those communities. In 2019, fewer than one in 10 professional and managerial workers smoked—well on the way to the smoke-free target of less than 5%—compared with nearly one in four workers in routine and manual occupations.

Half the difference in life expectancy between rich and poor is due to smoking, which means that the scope for reducing health inequalities related to social position is limited, unless the many smokers in lower social positions can succeed in stopping smoking. Smoking is linked to almost every indicator of disadvantage. Those overlap different communities, so smokers in routine and manual occupations, or who are unemployed, are also more likely to be living in social housing and to be diagnosed with mental health conditions.

There is a clear need for a new tobacco control plan that targets investment and enhanced support at disadvantaged smokers, wherever they are. As long as smoking remains the norm in some communities, not only will it be harder for smokers to quit, but smoking will continue to be transmitted from one generation to the next. The evidence shows that most people who smoke started as children. Prevention is key, so what will the Government do to reduce the appeal of cigarettes?

[Liz Twist]

Does my hon. Friend agree that raising the age of sale, as the APPG proposes, would reduce youth uptake? According to the UCL modelling that I spoke about, it would reduce smoking among 18 to 20-year-olds by a third. It would narrow the inequalities in uptake: as my hon. Friend has powerfully explained, children from more disadvantaged backgrounds are more likely to take up smoking.

[Alex Cunningham]

I have no doubt that everything my hon. Friend says is totally on the money. We can take action, and it need not cost the Government a fortune either. My hon. Friend raises the issue of age. Some parts of the UK have a Check 25 policy—would it not be wonderful if we could introduce such a check on the sales of cigarettes? It might help to put an end to smoking among younger people.

High smoking rates among people with mental health conditions are a leading cause of premature death and disease. Smoking accounts for two thirds of the reduction in life expectancy for people with a serious mental illness. The smoking rate among people with serious mental illnesses is more than three times that of the general population. The rate among people with depression and anxiety is just under twice that of the general population, but they account for 1.6 million smokers. There is now good evidence that smoking exacerbates levels of poor mental health, whereas stopping smoking contributes to improvements in mental health. Tobacco remains the biggest cause of cancer and death in the UK, so Cancer Research would like to see the ambition to make England smoke free by 2030 implemented. I ask the Minister whether we can expect to see that ambition realised.

I would like to say a little about “The Alternative Smoke-Free 2030 Plan” published by the Institute of Economic Affairs, which the hon. Member for Harrow East has also received. After the disastrous free-market policies promoted by the IEA and adopted by the last Prime Minister and Chancellor, I find it hard to believe that any current Minister would give any credence to the IEA’s recommendations on anything. However, the hon. Member makes an important point: as a party to the World Health Organisation framework convention on tobacco control, the Government and all public authorities are required to protect

“their public health policies…from commercial and other vested interests of the tobacco industry”.

If the Minister is in any doubt about the role played by the IEA, he should take note of the leaked documents that show that during the passage of the tobacco products directive, Philip Morris International described the IEA as a “media messenger” on its behalf, able to assist in “policy outreach” to “pro-actively relay our positions”, while British American Tobacco described it as a “vehicle for delivery” of its UK reputation initiatives. I would like the Minister to restate for the record, on the Floor of the House, the Government’s commitment to complying with paragraph 3 of article 5 of the convention and to preventing tobacco industry-funded organisations from influencing tobacco control policy.

The arguments for bringing tobacco regulation forward are multifaceted and can no longer be ignored. As a member of the APPG, I look forward to working with a new Minister who can do the maths to realise the cash value of a tobacco control plan, especially if we make the polluters pay, and—better still—who can help us to ensure that we have healthier people in all our communities.

Draft Mental Health Bill

Liz Twist Excerpts

Monday 27th June 2022 Commons Chamber

[Sajid Javid]

Once the Bill is law, it will require the use of secure accommodation to be limited to those who absolutely need to be detained, either for their protection or for the protection of others. Alongside the Bill, we need to make sure that the right resources are there. I mentioned earlier the extra resources that are going in, to a record level, including today’s announcement of the £150 million.

[Liz Twist (Blaydon) (Lab)]

I, too, thank the Secretary of State for sharing his personal experience, which it is so important to do. Will he tell me how he will match up the welcome provisions in the Bill with the need to ensure that action is taken? How will the resources match the responsibilities in the Bill?

[Sajid Javid]

When it comes to resources for mental health, we have not been waiting for the Bill. Although the Bill is an important part of ensuring that people get the right treatment, the commitment to resources began with the NHS’s long-term plan, which means that an additional £2.3 billion a year will be going into mental health services by 2023-24. Alongside that, an additional £500 million at least has gone in to support people with mental health needs because of the pandemic.

Government Action on Suicide Prevention

Liz Twist Excerpts

Wednesday 8th June 2022 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under your chairmanship, Mr Bone. I thank my hon. Friend the Member for Bristol East (Kerry McCarthy) for securing this enormously important debate, and for her excellent introduction to it.

The first thing I want to say is that, according to the most recent figures we have, 4,912 deaths by suicide were registered in 2020 in England alone. Men aged 45 to 49 are at greatest risk of death by suicide, and sadly for me, the north-east region is the area with the highest suicide rate, at 13.3 per 100,000. I am certainly unhappy about that and I am working with people locally to address the issue.

Some of the issues I want to touch on have already been covered, such as the refreshed national suicide prevention plan. This is hugely important, and something I have raised with Ministers before, as the Minister is aware. The consultation is welcome, but I agree with my hon. Friend the Member for Bristol East that we must make sure that suicide is properly addressed within it. It is enormously important that we have that dedicated attention and drive forward innovation in this area.

We also have to talk about funding for suicide prevention services. The NHS long-term plan allocated £57 million for suicide prevention and bereavement services, which are hugely important to local areas, but £25 million of that funding only ran until 2021, and all funding supporting local areas will cease in 2023-24. We need renewed ringfenced funding, which is also something I have raised as chair of the all-party parliamentary group on suicide and self-harm prevention. I know from speaking to my local services, both NHS and public health, how important it is that the funding is there to continue that collaboration and detailed work at local level.

Another thing I want to touch on is the situation for middle-aged men—one of the highest-risk groups. Suicide is the leading cause of death among men under 50 in the UK, and men account for three quarters of all suicides. As I have said, men aged 45 to 49 are most at risk; rates among this group have been persistently high for many years. Men who are less well off and live in the most deprived areas are up to 10 times more likely to die by suicide than more well-off men from the most affluent areas.

I am grateful to the Samaritans, who provide the secretariat to the APPG, for telling me about some in- depth research they have done with less well-off middle-aged men who have been struggling with their mental health, including having suicidal thoughts over a period of time. The themes those men told the Samaritans about included a lack of many meaningful social connections, often throughout their life, and having relationships connected to substance abuse. The other main theme was financial instability, which could include an erratic work history or long-term unemployment. There is no getting away from the fact that socioeconomic factors—deprivation, unemployment and other issues—have a real impact on the figures. It is really important to recognise those issues and work with colleagues in other Departments on them.

The Samaritans are calling for a focus on early intervention and support through the full range of statutory services that men may be in touch with. Research suggests that nine out of 10 middle-aged men who died by suicide in 2017 had been in contact with at least one frontline service or agency a week prior to their death. We also need further investment in voluntary sector and community provision to provide the services and initiatives that middle-aged men often find helpful in building connections and having conversations.

The other group that I want to refer to is people who self-harm. The all-party group conducted an inquiry into self-harm in younger people. We know that not all people who self-harm proceed to suicidal ideation or completing suicide, but there is a clear link. We need to ensure that people have readily available access to support at an early stage, because self-harm is such a strong risk factor for suicide.

In that inquiry, many people told us that they were considered too high-risk for primary mental health services, but not ill enough for secondary health services such as community mental health teams, or CAMHS in the case of younger people. We need to increase capacity and build expertise within talking therapy services to support people who self-harm, allow self-harm to be discussed in a safe, supportive way, and carry out assessments of people who disclose self-harm. We should get away from the stigma, because it still happens that, when people self-harm, they are thought to be attention-seeking. Instead, we need to ensure that it is picked up as a possible sign of a path. Preventive issues are also key. Having access to the appropriate services quickly is really important, so that people can get support.

On inequality and levelling up, I mentioned that people in disadvantaged communities faced the highest risk of dying by suicide, and that financial instability and poverty could increase suicide risk. Insecure income, unmanageable debt, unemployment and poor housing conditions all contribute to higher suicide rates, so we really need a cross-Government approach that recognises those risk factors and does something to address them. Specific actions would be to prioritise in the plan tackling inequalities as suicide risks across Government policy interventions, including through employment support, social security and economic planning. We should ensure that money advice and financial support is consistently available to everyone. We should better utilise what the Samaritans call the touchpoints of the state, such as work coaches in jobcentres and others that people come in contact with.

My hon. Friend the Member for Bristol East mentioned the need for real-time suicide data. That is being developed, and it is absolutely essential. We cannot continue with the system of waiting for the coroner’s inquest to decide the cause of death. We need to know, so that we can highlight issues early and respond.

On the Online Safety Bill, which I have raised previously with Ministers, it is important that health takes a leading role to ensure that people do not have easier access to sites that promote self-harm or suicidal plans. There need to be new offences, and suicide and self-harm content needs to be addressed.

On alcohol use and suicide, I am sure others will speak in more detail, but we had a quotation from a Samaritans survey respondent:

“My hope is that professionals start to see that alcohol use is often the result of an underlying issue and not simply tell people to sober up without offering further support for how to deal with the root cause”

of the problem. We need integrated commissioning and provision of mental health and alcohol treatment services, training for all healthcare staff around the relationship between alcohol and suicide, and further funding for local drug and alcohol recovery and treatment services, many of which have seen huge cuts in the last 10 years.

Finally, suicide is preventable, not inevitable. It is important that we take real steps to ensure that we prevent unnecessary deaths and have real plans in place to make that happen.