Fibrodysplasia Ossificans Progressiva

Liz Twist Excerpts

Thursday 7th September 2023 Commons Chamber

[Sir Mike Penning (Hemel Hempstead) (Con)]

I beg to move,

That this House has considered funding for the prevention of fibrodysplasia ossificans progressiva.

Thank you very much indeed, Mr Deputy Speaker. I am pleased you have pronounced it rather than me; from now on, perhaps we will just use FOP, which is what most people—including the families—call it, but the scientists do not.

FOP is a genetic condition; it is not an illness or a disease, as it is called all too often. It is very rare—one in a million. In this country, about 70 people alive have FOP, including about 30 young people and children. If we replicate that around the world, it is a very rare condition. The condition is probably the biggest nightmare for any parent, or anybody who loves a child.

Let me give an example: I played rugby, and I bruised very regularly. I stopped playing fairly recently, but when I did play rugby, I would bruise. For those who have FOP, there is a good chance that that bruise will turn to bone—skeletally, it will turn to bone. Most of us want our young children to be inoculated, and we have been through an inoculation process during covid, which I was very much involved with, but if someone with FOP has an injection there is a good chance that that trauma will turn to bone. I have circulated privately to the Minister, Mr Deputy Speaker and others some photographs of what that trauma can end up like and does end up like.

I got involved in this issue when a couple came to see me in my constituency and said, “Our daughter has FOP”—as a dyslexic person, I cannot say it to this day, although I have practised and practised. I had no idea what they were talking about. It is a bit like the previous debate: when we first heard about Primodos and the problems with it, most of us in this room had never heard of it. FOP is much rarer than the conditions suffered by the victims of Primodos that we have been talking about, or of mesh, valproate or any of those things, but the effects on those individuals and their families and loved ones are profound.

My constituent said to me that, as a mum, she looked at her baby and thought there was something wrong with her toes. The initial diagnosis from most paediatricians would be bunions—bunions on a new-born baby. My wife has bunions, but it is nothing to do with what she was born with; it is to do with the quality of the shoes she wore as a young lady. She will not mind me saying that, because we have discussed this case before. It is only sometimes, when people get in front of the right expert, that they get the diagnosis for what is a completely incurable, progressive condition and find out what they have. That is what happened with my constituents. There are three consultants in this country who have that capability, and they were lucky that they got in front of one. I pay tribute to the Portland Hospital where the diagnosis took place.

What does this mean for a young person? There are young people in the Gallery this afternoon who have the condition. I think the little ’un has gone home now because she was rather tired, and she helped me deliver a letter to the Prime Minister at No. 10 earlier today. What does it mean for them? It means that their whole life is different. Do we want to wrap our children up in cotton wool? No, of course we do not. Even if they have FOP, do we want to wrap them up in cotton wool? No, we do not, but they have to be extremely careful about inoculations, bruising, sport, and rough and tumble.

My constituents are very lucky. I have a very forward-thinking planning department in my local authority, which used the delegated powers it has to grant planning permission on the green belt—the green belt that I fight to protect in my constituency—so a specialist house could be built for Lexi, and she has the facilities where she can have the safe upbringing she needs. Lots of people were very worried about permission being given in that way because the condition is so rare, and I had people saying to me, “Are you really sure this baby’s got this condition, and is this not just circumventing the planning rules?”. It was only when I circulated some of the photographs, which many colleagues in the House have, that people said to me, “Okay, we get it,” and two of them actually said, “We’re really sorry. We get it.”

Because the condition is very often not visual in the early stages, there is no understanding of it. It is a bit like a mental health condition. We have much better ideas about mental health these days, but when we walk up to someone, we do not know whether they have such a condition. If people go up to Lexi today, they would not know that she has FOP, but they will do in the next few years, when it will become pretty obvious. The interesting thing about FOP is that there is no set plan or rule for it. In some cases it progresses very fast, the bone grows very quickly and the effects on the skeleton, movement and mobility are very quick, but in others there are short bursts of it, while sometimes there is nothing for years and then it will progress again.

Given the reason for this debate—and I apologise to the Minister, to whom I have spoken privately about this—I did not want the Minister for Health and Secondary Care on the Front Bench. I wanted the Minister for Science, Research and Innovation on the Front Bench. It is nothing personal, but this is not an NHS issue. It is a condition that needs scientific expertise in research and trials, which is in the Science Minister’s portfolio. I understand why, as soon as we start talking about anything to do with health, the Health Department goes, “That’s ours,” but on this particular occasion, it is not.

[Liz Twist (Blaydon) (Lab)]

Can I just say that I concur with the right hon. Gentleman’s comments about research and health research? There is a concern about how it is being handled.

[Sir Mike Penning]

I thank the hon. Lady for that intervention.

Earlier, we had a short statement on Horizon, which was excellent in that the Science Minister was on the Bench, and when I asked the Secretary of State a few questions about FOP, he agreed to meet us in short time. The great news is that we will meet the Science Minister. The key to what was announced earlier is that work was being done before covid—and there is work on FOP being done around the world—and there was funding from Horizon for trials on FOP. The big issue was that covid interrupted the trials, not our leaving the EU. I am sure some colleagues will say, “Ah, that’s what it’s all about.” No, it was nothing to do with that; it was covid that affected it. I put that on the record straightaway, and we now have the great situation that Horizon is back on stream.

One of the reasons I wanted to see the Science Minister on the Front Bench was to ask him this question. Perhaps colleagues in his office can elaborate on this before I meet him. The trials were halted because of covid, but have we got to start from scratch again or can we move on with those trials? I am old-fashioned and I used to be called a Eurosceptic, but we are now out of the European Union, so that is great. One of the things that was said is, “Well, you don’t want to co-operate with Europe,” but of course we want to co-operate with Europe. The announcement today on Horizon is a classic example, and the classic example of why we have to collaborate not just with Europe but with America and other parts of the world is that this condition is so rare and we could not do trials here. The scientists in America have a much bigger base on which they are able to do trials, and we need to learn from them and they need to learn from us.

So it looks sensible that we will be back in the European trials, but I am petrified about whether we will have to wait for Horizon to announce bidding on a certain part of the scientific research, and then wait a couple of years for that decision to be made. That is what tends to happen with these projects, but we are already in the middle of the project.

In trying to work out the best route forward—I am not a scientist; I am looking at this as a dad—we need two things. Research is going on into how we prevent the progression of FOP in the bone structure when there are traumas, and whether there is something early on that we can turn off. Is there research out there that can predict that? At the moment there is not, I understand. We have two situations. Can we in some way look at the future and at anybody who, family-wise or genetically, is likely to get this condition? Secondly, if a child has got it, how can we slow down progression? The families here with me today, and those in FOP Friends, would argue that they have this condition so they need help and research now, but we also need research to prevent what is going on genetically.

It also worries me how we need to spread knowledge about FOP around the world, not just in this country. In some parts of the world, almost no FOP babies are born. Just on a law of averages, that is not possible, and it has already been proven that there is no cultural link. Some genetic conditions are linked to what part of the world someone might have come from, but apparently they have already done research on FOP, and that is not the case. What is happening in parts of the world where babies are not born deformed and people do not instantly know. That sort of research desperately needs to be done. Lots of work is being done in Boston and around the world, but it is key that we are back as an associate of Horizon. Can we start not from scratch but halfway through and where we were before covid hit the project?

In a perfect world, we in this Chamber, and the families, would like to be able to press a button, perhaps give a tablet, and stop this progression. It is the most awful thing to be sitting there, waiting for your child to perhaps have a bump, a bruise or a progression. As a group, FOP Friends make sure that everybody talks to everybody. It is better learning from other people who are in the same situation and not having to reinvent the wheel every five minutes. As I said earlier, people are desperate not to wrap their child in cotton wool, and to give them as much of a normal life as possible. Earlier I was talking to the chair of FOP Friends. He was playing badminton with his son who has got FOP, and I think he loses on a regular basis. There are things that can be done, but the problem with the condition is that it is not the same in every child. It will be different in every child, and it is different in its progression.

That is why this debate is so important, and I thank the Backbench Business Committee for agreeing to it. It is not a normal sort of debate. We have had a debate in Westminster Hall on this issue, which has such a dramatic effect on the lives, futures, aspirations and dreams of those families whose lives are affected by FOP. I thought, and my colleagues thought—some of them could not be here today—that we should bring this subject to the Floor of the House, so that we could find out where this research is going.

[Liz Twist (Blaydon) (Lab)]

I thank the right hon. Member for Hemel Hempstead (Sir Mike Penning) for bringing this debate to the Chamber and for all the work he has been doing to raise these important issues within Parliament. It was good to hear such a fulsome and good description of the condition and how people are affected by FOP. As chair of the all-party parliamentary group on rare, genetic and undiagnosed conditions, I am glad to be able to take part in this debate to highlight the issues facing people with FOP.

We have heard from the right hon. Member about just how debilitating this condition is. Usually caused by a gene mutation, FOP is the only known condition where the body changes one organ to another. Bone forms in muscles, tendons and other connective tissues, progressively and irreversibly restricting movement. This severely limits the ability of those affected to perform the most basic tasks of daily life. Children with FOP lose their independence just at the point they should be gaining it. Many of the issues affecting families of children with FOP are experienced by other people across the rare disease communities, including long diagnostic odysseys.

[Sir Mike Penning]

I apologise for interrupting so early in the hon. Lady’s speech; she is generous in giving way. One of the bits that I think I missed in my speech is that FOP is not a disease; it is actually a genetic condition. For the families, that is really important. Americans talk about FOP as a disease rather than a condition, but really and truly it is a genetic condition that someone is born with, rather than something that someone would contract.

[Liz Twist]

I thank the right hon. Member for making that clear. He is right that it is important for the families. Sometimes in this House—even in our APPGs—we use a kind of shorthand about issues to bring people together. FOP is indeed, as he said, a genetic condition.

The rare disease community has some issues in common, including those long diagnostic odysseys. How long do people have to wait for their condition—I will use that term—to be recognised? There is a lack of clinical awareness with many of these conditions and limited treatment options for far too many people.

FOP, as the right hon. Member has said, is perhaps one of the rarest and most disabling of these conditions, with no treatment or cure. Within the rare conditions community, a diagnostic odyssey, as he will know, refers to a common scenario in which delays to accessing the right support and the right treatment—where it exists—can cause irreversible deterioration of an individual’s condition. While there is no treatment for FOP, repeated investigations, such as biopsies, can trigger the condition’s progression. That can be triggered by trauma, too. Furthermore, delayed diagnosis prevents parents from taking action to keep their children safe from situations and activities that could trigger injuries and flare-ups.

Unfortunately, a diagnostic odyssey is the norm for many children with FOP. Getting a diagnosis takes one and a half years on average, and more than half of people with FOP get the wrong diagnosis in the first instance, as we have heard. Despite genetic tests being available, FOP is not included in the national genomic test directory for rare and inherited conditions. Can the Minister explain why it is not included in that directory? What plans do the Government have to change that position?

The real hope for FOP, as we have heard, is new research. Like much of the research into rare conditions, it is likely to have far-reaching benefits for more common illnesses, such as osteoporosis, childhood brain cancer and heart disease. At the moment, the Government are overseeing a decline in research and international life science competitiveness, with commercial clinical trial activity in the NHS declining over recent years. We have heard from the right hon. Member for Hemel Hempstead about the STOPFOP trial, which is supported by funding from the European Union’s Innovative Medicines Initiative as part of Horizon 2020. Is it not ironic that we are discussing this on the day we have heard that we are now in the Horizon programme? Thank goodness we are; it is an important move. However, there have been two years of wasted opportunities and uncertainty for people going through trials and research, such as people with FOP.

I understand that researchers would have to apply for new funding from the scheme to carry on with the STOPFOP trial. How will the Government ensure that funding continues to be available to allow the trials to continue, and to ensure real progress in diagnosing and treating FOP?

As the right hon. Member for Hemel Hempstead said, time really is of the essence if we are not to lose the benefit of the work already done and if we are to give those with FOP, and those who may be born with the condition in future, the best chance of the earliest possible diagnosis and treatment.

--- Later in debate ---

[The Minister for Health and Secondary Care (Will Quince)]

Let me start by thanking my right hon. Friend the Member for Hemel Hempstead (Sir Mike Penning) for securing this important debate on FOP and for his powerful and compelling contribution. As he eloquently and articulately set out, FOP is an incredibly rare and truly devastating condition. He is a champion for people living with it and for their families, and I thank him for that. It is impossible not to be moved when reading about this currently incurable condition and when seeing pictures such as those he sent me about it. I am sure I speak for the whole House when I say that hearing about Lexi Robins and her parents, Alex and David, greatly moved me. I can only imagine what they must be going through, and I send my heartfelt sympathies to them and their entire family.

I also wish to express my admiration for Chris and Helen Bedford-Gay, who established the charity FOP Friends, after their son, Oliver, was sadly diagnosed in 2009. I understand from my right hon. Friend that they have raised more than £700,000 since then to fund research into treatment and to support families impacted by FOP. I am sure that many, many families are incredibly grateful for all their efforts.

At the outset, let me confirm that I am happy to join my right hon. Friend in meeting the Science Minister on this issue. We already work hand in glove on matters of research, and the House would expect nothing less. It would be remiss of me not to also welcome the hon. Member for Bristol South (Karin Smyth) to her place and to congratulate her on her promotion on the Front Bench. I also thank the hon. Member for Blaydon (Liz Twist) and my friend the hon. Member for Strangford (Jim Shannon) for their constructive and powerful contributions to this afternoon’s debate. I will endeavour, with your permission, Mr Deputy Speaker, to give as full and comprehensive a response as possible, given that I have far longer than any Minister usually has to respond to a Backbench Business Committee debate.

Let me kick off with a question asked by the hon. Member for Blaydon about the national genomic test directory. I scribbled those words down at pace as she was speaking. I will check and write to her specifically to confirm this, but my understanding is that FOP is a form of skeletal dysplasia, which is in the national genomic test directory. I will confirm that in writing once I have checked with officials on my return to the Department.

I want to assure the House and, of course, all families affected by rare diseases and conditions—I note my right hon. Friend’s point about FOP being a condition, but “condition and disease” is a phrase that the Department and clinicians often use—that we certainly recognise and understand the challenges they face. These diseases and conditions have wide-ranging impacts, not just on sufferers’ physical health, but on their mental health and on their involvement in the community, as he set out. That is why it is crucial that those affected by this condition receive the best possible care, from swift diagnosis to treatment, to improve their quality of life as diseases and conditions, sadly, progress.

To do that, it is vital that the UK harnesses our research prowess. Today’s debate has largely focused on the power of research and how it is often the key to unlocking so much. Our universities, scientific institutions and healthcare system very much lead the world in this space—we often say that we are world leading in lots of areas, but research is certainly one area where we are. They have enormous potential to develop solutions to improve the lives of people living with rare conditions, including FOP. Let me be clear that the Government are committed to funding this research.

In July, the Medical Research Council and the National Institute for Health and Care Research announced £14 million of investment to launch the UK rare diseases research platform. That is bringing together expertise from across the UK to foster new and innovative treatments for rare diseases and conditions, and to accelerate work to improve diagnosis. What is more, the Government are committed to funding groundbreaking research through nearly £790 million of new investment, again through the National Institute for Health and Care Research’s biomedical research centres. There are 20 centres, all of which research rare conditions and bring together academics and clinicians. Their role is to translate scientific breakthroughs into potential new treatments, diagnostics and technologies.

[Liz Twist]

I thank the Minister for his comments about the UK rare disease funding. It is very welcome, and I am particularly pleased to see that some of those centres are in Newcastle, in the north-east. That is really important, as I will discuss in my Adjournment debate later. Will he talk specifically about research into this condition, which is what the families will want to hear?

[Will Quince]

The hon. Lady pre-empts my next sentence, but let me give way to my right hon. Friend before I continue.

--- Later in debate ---

[Will Quince]

I thank my right hon. Friend for his intervention. Again, he has pre-empted what I was about to say next. I listened intently to his question to the Secretary of State during the statement earlier today, where he secured a meeting with the Minister of State for Science, Research and Innovation. Of course, I would be very happy to join him at that meeting. I share with him the view that if there is an opportunity for that research to be continued, we certainly do not want to see it start from scratch. At the moment, my understanding is that that research relates only to adults and my right hon. Friend, understandably and rightly, would like it to be extended to children.

Let me turn to the steps that the Government are taking to tackle rare diseases and conditions more broadly. In 2021, we published the UK rare diseases framework, which embodies our commitment to building a brighter future for people living with rare diseases and conditions. The framework identified four key priority areas: helping patients get a faster diagnosis; increasing awareness of rare diseases among healthcare professionals, which is something that my right hon. Friend is particularly passionate about; delivering more co-ordinated care; and, alongside that, improving access to specialist care, treatment and drugs. Since then, as was alluded to by the hon. Member for Inverclyde (Ronnie Cowan), all four nations of the United Kingdom have published rare disease action plans to suit their healthcare systems, and we very much work—and have to work—in collaboration on that.

In England, we published our second rare disease action plan on 28 February this year, which also marks International Rare Diseases Day. In that, we set out 13 new actions to drive improvements across the health system and we are committed to publishing action plans throughout the lifetime of the framework.

I touched on awareness of FOP and rare conditions and diseases more broadly, because my right hon. Friend rightly highlighted how a lack of awareness of FOP in the medical community can lead to under-diagnosis, missed diagnosis and, sadly, unnecessary examinations, which can exacerbate symptoms. That is why improving healthcare professionals’ awareness of rare diseases and conditions is central to the rare diseases framework. I am pleased to inform the House that we are making good progress in that regard. NHS England has developed GeNotes, which is an online resource that puts information about genetic diseases and conditions at the fingertips of healthcare professionals. I am pleased to tell the House that resources dedicated to FOP will be added to GeNotes. That will help more clinicians to diagnose this awful condition, and sufferers will receive the treatment that they need more quickly.

My right hon. Friend has raised newborn screening with me privately. The hon. Member for Bristol South (Karin Smyth) also raised newborn screening for FOP. They are both right that antenatal and newborn screening can be a vital tool in the early diagnosis of rare diseases. National screening programmes are implemented on the advice of the United Kingdom National Screening Committee, which makes independent evidence-based recommendations to Ministers in all four nations. While I understand that there are currently no plans for a national newborn screening programme specifically for FOP, I highlight that proposals for new conditions can be submitted to the National Screening Committee’s annual call for new topics.

[Liz Twist]

On newborn screening, is the Minister aware that there is concern among the rare disease community about the limits of our newborn screening process? This is something that we are speaking about at the moment. We think that there are options for it to be expanded in a positive way.

[Will Quince]

I have heard that from other charities, groups and organisations representing those with rare diseases and conditions. It is right that we respect the independence of the National Screening Committee, which puts forward to Ministers evidence-based decisions, but it is nevertheless important that we listen to organisations that are making valid cases. I am also concerned about the length of time that the National Screening Committee can take to make decisions, review evidence and present recommendations to Ministers. In our meeting, I will happily discuss that issue in greater depth and at greater length.

Let me once again thank my right hon. Friend the Member for Hemel Hempstead for securing today’s hugely important debate, and in particular for securing it on the Floor of the House. I express my heartfelt support for the entire FOP community: those living with the disease, their carers, their families, the clinicians and the charity FOP Friends, which works tirelessly to improve the lives of people affected by this devastating condition. I reiterate my thanks to all Members for shining a light on the condition this afternoon. I very much look forward to our meeting and to discussing this further. I genuinely believe that together we will continue to strive for progress and awareness, and support those living with FOP.

Smokefree 2030 Target

Liz Twist Excerpts

Tuesday 20th June 2023 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under you as Chair, Mr Sharma. I commend the hon. Member for Harrow East (Bob Blackman) and my hon. Friend the Member for City of Durham (Mary Kelly Foy) for securing today’s debate.

Smoking is not a lifestyle choice; it is a lethal addiction that the vast majority of smokers enter into before they reach adulthood. It is also an addiction that is increasingly concentrated among the most disadvantaged in society. The Office for National Statistics recently reported that over a third of smokers are now among the poorest 20% of the population. Lest we forget, that concentration of disadvantage is fuelled by the tobacco industry, the ability of which to maximise its profits by selling lethal and addictive products must be strictly regulated if we are to achieve our Smokefree 2030 ambition and protect the nation’s health.

My constituency, like that of my hon. Friend the Member for City of Durham, is in the north-east, which is the most disadvantaged region in the country, as well as having the lowest regional life expectancy and among the highest smoking rates. It gives me absolutely no pleasure to say that. In 2021, 22,000 adults in Gateshead smoked, which cost the NHS £7 million and local authority social care £5.4 million, as well as costing £66 million in lost productivity. Those costs are due entirely to smoking and are entirely preventable.

Tobacco addiction has been levelling down communities across the country for decades and will go on doing so until the Government start to take action to deliver on their Smokefree 2030 ambition for all in society. On average, smokers spend around £2,500 per year on smoking. That is money they can ill afford. The total spend in Gateshead is £55 million—an eye-watering amount that goes up in smoke, with no benefit to the local community. Ending smoking will significantly increase disposable income in poorer communities such as mine, help grow the local economy, and improve the health and wellbeing of our communities.

Members have spoken about the need for investment in stop smoking services, which is indeed vital. The hon. Member for Harrow East spoke passionately at a debate in March about the Smokefree 2030 ambition and the role of support for smokers in achieving that goal. I wholeheartedly agree with him: smokers need to be motivated and supported to quit. But, as we have heard, the public health budget that funds local authority stop smoking services has been cut by 45% in real terms since 2015. That funding desperately needs to be reinstated if smokers are to get the support they need and deserve. The Government have so far failed to make the necessary funding available from the public purse. That is why I support a levy on tobacco manufacturers to pay for measures such as the stop smoking services needed to deliver the Smokefree 2030 ambition. Will the Minister fulfil the prevention Green Paper commitment to consider a “polluter pays” approach to funding tobacco control? That funding is sorely needed if we are to achieve our ambition of a Smokefree 2030.

Another area I want to look at is mental health. More investment is desperately needed to tackle smoking among those with mental health conditions as smoking is the leading cause of significantly reduced life expectancy among people with a mental health condition. Depending on the condition, life expectancy can be reduced by between seven to 25 years and as many as one in three smokers has a diagnosable mental health condition. Smoking is an indirect cause of poor mental health across the whole population through its impacts on physical health, income and employment. It is also a direct cause because it increases the risk of some mental health conditions, such as depression and schizophrenia. Those factors form a cycle whereby smokers are at greater risk of poor mental health and those with poor mental health are at greater risk of becoming heavily addicted to smoking and struggling to stop, further damaging their mental health. Investment is desperately needed to break that cycle. I could say much more on the issue. It is vital that we look at the provisions in the NHS long-term plan. They, on their own, will not reach the much larger group of smokers who need assistance to quit.

The improving access to psychological therapies programme has around 1,690,000 referrals a year and supports people with conditions such as depression and anxiety. The smoking status of clients of IAPT services is not routinely monitored. However, given the high rates of smoking among people with common mental health conditions, it is likely that around one in four clients smokes, which is equivalent to 504,000 smokers a year taking part in the IAPT programme. Pilot projects have shown that IAPT therapists are willing and able to deliver support to quit and that clients value the offer, so extending IAPT to include smoking cessation treatment would be highly cost-effective as it piggybacks on an existing service. But that still requires investment.

Finally, I want to share concerns that others have raised about the increase in youth vaping. Smokers with mental health conditions have been found particularly to benefit from access to e-cigarettes given their high levels of addiction and their barriers to quitting. It is essential that we ensure that adult smokers continue to have that help as a safer alternative to smoking and a means of quitting, but we must drive down the increasing rates of vaping in our children.

[Gareth Johnson]

The hon. Lady is making an interesting speech. There is no doubt that vaping saves lives when smokers convert to vaping. Although we must do everything we can to stop children from accessing vapes and dissuade non-smokers from taking up vaping, does she agree that the last thing we want is to do anything at all that prevents or dissuades smokers from switching to vaping or other alternatives such as heat-not-burn products?

--- Later in debate ---

[Liz Twist]

Of course, it is right that we do everything we can to help adults stop smoking, but we also want to prevent young people from accessing vaping. We do not know the long-term impact, and it is important that we do not get non-smokers taking up smoking because of some attractive bubblegum or strawberry-flavoured vape. There are also environmental issues with disposable vapes, which are often used. Yes, I agree with the hon. Gentleman, but we must tackle the other side of the issue as well.

Fresh, the tobacco control programme in the north-east, and Action on Smoking and Health have submitted strong, evidence-based proposals for further regulation of vaping to the consultation, which has just closed. The Government must act now, without delay, to implement their proposals. My final question to the Minister is this: will he commit to publishing concrete proposals for regulation to tackle youth vaping before the summer recess?

Stem Cell Transplant Patients

Liz Twist Excerpts

Monday 12th June 2023 Commons Chamber

[Mark Tami]

I thank my hon. Friend for that point. He is entirely right. As part of the transplant process, the immune system is effectively wiped out. That is a necessary part of the treatment, but clearly it leaves the patient fairly defenceless to infections. Once the donor stem cells are given, they will slowly build up a new immune system inside their body, but that takes time—it does not happen overnight—so those patients are often very vulnerable to infections. He made the point that if they put themselves into a dangerous situation because of financial pressure, the worst could happen to them—or at the very least, they could fall back into the medical setting that they were hoping to remove themselves from.

As part of the process, patients strictly isolate themselves in a hospital room for weeks—sometimes months—on end. Even after they leave, they are often weak and, as a result of their inability to work, their household income will obviously suffer. When patients are well enough to be sent home from hospital, there is still a long, gruelling and costly recovery ahead, whether they are the main wage earner or another member of the household, because obviously everyone else has to support them, whether in a caring role or otherwise.

[Liz Twist (Blaydon) (Lab)]

I thank my hon. Friend for giving an excellent explanation of the position and for succeeding in getting an Adjournment debate on the issue. Does he agree that people are hit three times over? They are hit while having the treatment, often hit by reduced income when they have finished their treatment and hit by extra costs from needing heating and food as well as other things, especially now we face such a cost of living crisis.

[Mark Tami]

Absolutely. My hon. Friend makes an important point. Patients must continue to take those extra measures for fear of getting an infection that could be life-threatening. As she said, they are advised to keep warm at all times, to sterilise drinking water and to wash their clothes more often. With the surge in electricity and gas bills, those extra costs are really hitting patients hard.

Another part of the transplant process is having what is known as a clean diet, which basically means that the patient needs to know exactly where their food comes from and how it was cooked, so they tend to cook it themselves, which in the main makes for a more expensive process. Ready meals are not really an option. If someone very kindly prepares something, they cannot take the risk because they cannot be 100% sure where it has come from. Clearly, the record food prices we are now seeing make the situation far worse. We hear on the news that people are going for cheaper options.

Mental Health Treatment and Support

Liz Twist Excerpts

Wednesday 7th June 2023 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

The Minister is talking about the mental health strategy now being part of the major conditions strategy. Is he aware that many mental health organisations see it as a retrograde step that, having conducted an extensive consultation and invited views, the strategy will now be put back even further?

[Neil O’Brien]

I assure the hon. Lady that all contributions were fed into the major conditions strategy process. The reason why we are making the mental health strategy part of the major conditions strategy, and why we are looking at co-morbidities, is because, as the hon. Member for Tooting mentioned, people with mental health conditions have a shorter lifespan and, in general, the cause is typically a physical co-morbidity. It is essential that we look at these things together if we are to make progress on tackling disparities.

We have committed to publishing a new national suicide prevention strategy later this year, and we are engaging widely across the sector to understand what further action we can take to reduce cases of suicide. The new strategy will reflect new evidence and the national priority for preventing suicide across England, including action to tackle known risk factors and targeted action for groups of concern. We are also providing an extra £10 million over the next two years for a suicide prevention voluntary, community and social enterprise grant fund. This competitive grant fund will help to support the sector to deliver activity that can help to sustain services to help meet increased demand for support and to embed preventive activity that can help to prevent suicide and stem the flow into crisis services.

[Liz Twist]

Of course it is good that we will have a refreshed national suicide prevention strategy, and of course £10 million is welcome, but it is not out there yet. In the meantime, the £57 million that was earmarked for local work on suicide prevention has run out. Will the Minister consider making urgent interim arrangements to ensure that this vital work can continue until the strategy is published?

[Neil O’Brien]

I am conscious that we need to help the sector to maintain and grow its levels of service.

I finish by paying tribute to all those who do so much to support people’s mental health: frontline NHS staff, those working in the voluntary community and social enterprises, and all those who are quietly supporting a family member or loved one.

--- Later in debate ---

[Liz Twist (Blaydon) (Lab)]

The Minister spoke earlier about what the Government have done for the mental health service, but we have all known for far too long that people in mental health crisis are not getting the support that they need urgently. They need swift, accessible and effective support and treatment. I am glad that we in Labour have a clear and thought-through plan to address this issue and suicide prevention.

I want to start with some figures. The shadow mental health Minister, my hon. Friend the Member for Tooting (Dr Allin-Khan), has already touched on the national figures. The figures from my local trust in the north-east are also worrying. Just in the 2021-22 financial year, adults in mental health crisis spent more than 1,134 hours in A&E at Gateshead Health NHS Foundation Trust, while children in crisis spent 180 hours there. The North East Ambulance Service received 3,622 emergency 999 calls from people in mental health crisis. NHS Digital figures for 2022 showed that, in the north-east and north Cumbria ICB alone, 31,345 children and 70,770 adults were on waiting lists, and 12,845 patients had treatments closed without even receiving an appointment. Those staggering figures have been reflected nationally.

This morning, I met representatives from the charity YoungMinds, who told me that urgent referrals to CAMHS are the highest on record. Let us make no mistake: many of our young people are in acute crisis. Research by the charity shows that 43% of the young people turned down by CAMHS had experienced suicidal thoughts, psychosis or self-harm. As a result of having to wait so long, 26% had tried to take their own life.

In an intervention, I raised the concerns of mental health charities about the subsuming of the mental health strategy into the major conditions strategy. There is real concern that the voices heard in the mental health consultation will be lost and that a five-year major conditions strategy is too short to bring about the changes needed and to emphasise the cross-governmental work envisaged in the original plan.

As the Mental Health Foundation highlighted,

“public mental health has traditionally received extremely minimal funding”,

of an average of about 2% of the public health budget of local authorities. That has been accompanied by a cut of 26% in public health grants in real terms. The Mental Health Foundation notes that we cannot simply “treat our way” out of mental health problems. We know that they are formed by hard socioeconomic factors that the Government need to address, and that the poorest regions, such as mine in the north-east, see the highest number of suicides. The Government need to work on that.

As the chair of the all-party parliamentary group on suicide and self-harm prevention, I have the pleasure of talking with many local organisations that have been formed by people who have personal experience of suicide. To name just one, James’ Place is a charity that offers professional support to men in acute suicidal crisis. It currently has centres in London and Liverpool, but I am delighted to say it will be opening a centre in the north-east, where, sadly, we have the worst suicide figures in the UK. There is so much more I could say, but I wish to emphasise my wholehearted support.

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.

--- Later in debate ---

[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.

--- Later in debate ---

[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.