Covid-19 Update

Liz Twist Excerpts

Monday 29th November 2021 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

Shop workers and transport workers will bear the brunt of asking people to comply with these new restrictions. What measures do the Government propose to ensure those workers get the protection they deserve?

[Sajid Javid]

These new rules on face coverings will be enforceable by law, and the police and other law enforcement authorities will be able to issue penalty notices—I think the penalty starts at £200. That should be a last resort but, if necessary, it should be enforced.

Chronic Obstructive Pulmonary Disease

Liz Twist Excerpts

Wednesday 17th November 2021 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under you as chair, Ms Nokes. I congratulate my hon. Friend the Member for Weaver Vale (Mike Amesbury) on securing this debate on an important subject.

In my constituency of Blaydon, in the north-east of England, the figures for those diagnosed with COPD are sadly above the UK average. We know that 1.3 million across the UK have a diagnosis of COPD, but it is estimated that a similar number have undiagnosed COPD. In Blaydon, 2.9% of people have a COPD diagnosis, well above the England-wide figure of 1.9%. It is sadly in the top 10% of constituencies with the highest prevalence. The north-east is the region with the highest prevalence of COPD, at 3%. Remember, that figure is for diagnosed COPD. As I have said, it is estimated that double that number have COPD but do not have a diagnosis.

The British Lung Foundation has today—World COPD day—launched its report “Failing on the fundamentals”, based on the largest survey of those with COPD. It finds unacceptable levels of diagnosis and care for those with the condition. In the north-east, 78.1% of survey respondents reported that they had not received the five fundamentals of COPD care, as set out in NICE guidelines, and as referred to by my hon. Friend. That is 4 percentage points higher than the England-wide average of 74.1%.

Some 29.1% reported facing stigma and discrimination, which is similar to the England-wide average. A higher proportion in the north-east cited as barriers to diagnosis not wanting to know if they had COPD and not knowing the signs of potential COPD. In addition, 53% of respondents in the north-east who smoke said that they had been offered support to quit smoking in the past year, slightly lower than the 55.9% across England. As we know, stopping smoking is a key part of the treatment of COPD.

That matters because behind each of those statistics lies a real struggling person. In my constituency office, we see too many people hugely affected by COPD. As the condition develops, they face increasing disability and exacerbations or flare-ups of their condition, affecting their mobility and day-to-day life, evidenced by their need to claim disability benefits. It affects every part of their life, including their mental health. We need to get better at diagnosing and treating COPD, to stop its progression and reduce that impact on daily life. I want to speak in particular about diagnosis and what needs to be done, first, in the recovery from covid and then more generally.

As we have heard, the diagnosis of COPD is appallingly low, and the British Lung Foundation cite several reasons. More than 1.3 million people have a diagnosis of COPD and a similar number have the condition, as yet undiagnosed. The British Lung Foundation’s first annual COPD survey, which was just published, as I said earlier, shows that even before the pandemic, almost three quarters—70%—of people who have been diagnosed with COPD said that they faced barriers in getting a diagnosis. Recent Government figures demonstrate that diagnosis rates, which were already far too low, plummeted further during covid-19. In 2020, there was a 51% reduction in COPD diagnosis compared with 2019, which means that about 46,000 people in England alone missed out on a diagnosis. As we heard, that is a much higher drop than for comparable conditions.

The BLF says that diagnostic tests have still not properly resumed, so it is likely that as many as 92,000 people in England have gone undiagnosed in the past two years. While rates of cancer diagnosis are already up to, and in some areas better than, pre-pandemic levels—thank goodness for that, I hasten to add—there is no dedicated plan to address the huge backlog in respiratory care.

Spirometry is the main diagnostic test for COPD, but it was paused at the height of the pandemic because it was believed to be an aerosol-generating procedure. It has been now confirmed that that is not the case. Guidance has been published on how to conduct spirometry in a covid-safe manner, but it appears to have made little difference. By and large, spirometry testing has still not resumed in primary care, which is where most people with COPD are diagnosed.

[Ruth Jones]

My hon. Friend is making a powerful point. Spirometry is key, because COPD cannot be diagnosed by video link or telephone. Does she agree that it is crucial for people to be seen face to face to ensure that we fully diagnose them in future?

[Liz Twist]

I certainly agree. The British Lung Foundation says that there is a clear need for NHS England to intervene and work with local health services to prioritise the urgent restart of spirometry testing in primary care for the diagnosis of COPD and other respiratory conditions. The same would also be true in the other nations of the UK.

Two of the major barriers to restarting spirometry testing in primary care are a lack of capacity and, ironically, the creation of community diagnostic centres. If rolled out to the recommended scale, community diagnostic centres should help to improve diagnosis of COPD and other conditions, but people with COPD cannot afford to wait until CDCs are established for a formal diagnosis while their symptoms and wellbeing deteriorate. Unless spirometry and other diagnostic tests are restarted in general practice, the diagnostic backlog risks overwhelming CDCs as soon as they are established.

The Government and NHS England need to provide sufficient funding for enough capacity to conduct spirometry testing in primary care. Delays in diagnosis mean that too many people with COPD are seeing their condition worsen, which has the real impact on their day-to-day lives that I talked about, so the problem must be tackled urgently for the sake of my constituents with COPD, particularly those not yet diagnosed.

The Government need to properly fund our public health services. We have to make sure that stop smoking services can be easily accessed by those already diagnosed with COPD and those who may develop it, as the link between smoking and COPD is clear. The proposed updated tobacco control plan, which we are expecting, will play a key part in preventing COPD. It needs to look at the polluter pays principle, which calls on tobacco producers to pay for the damage that they cause, as recommended by the all-party parliamentary group on smoking and health.

Will the Minister agree today to implement the steps proposed by the British Lung Foundation and others to improve diagnosis of COPD as a matter of urgency? Will she commit to improve funding for public health services, in particular smoking cessation services? Will she ensure that the tobacco control plan addresses the issues raised by the APPG on smoking and health?

--- Later in debate ---

[Gillian Keegan]

Obviously, there would be a relationship between the GP and the smoker, but that can go either way. Anybody who is in those age groups needs to be made aware that they are entitled to this free lung health check, and it is the responsibility of us all to make sure those checks are available. I am sure we will all ensure that that is understood.

In 2019, 85% of deaths due to COPD were attributable to smoking, and in 2019-20, 84% of hospital admissions with COPD were attributable to smoking. The proportion and the number have remained quite similar over the past five years, and as has been mentioned by a number of hon. Members, smoking is a key factor in many cases of COPD. This Government are committed to reducing the harms caused by tobacco, and have made good long-term progress in reducing smoking rates, which are currently 13.9%, the lowest on record. However, with 6.1 million smokers in England, tobacco is still the single largest cause of preventable mortality, and a radical new approach is needed to address the stark health disparities associated with tobacco use. As such, we have set out the bold ambition for England to be smoke free by 2030. To support that ambition, we have announced the publication of a new tobacco control plan, which will include an even sharper focus on tackling health disparities and will support the Government’s levelling-up agenda.

The NHS long-term plan commits to delivering NHS-funded tobacco treatment services to all inpatients, pregnant women and people accessing long-term mental health and learning disability services by 2024. COPD is responsible for around 33% of annual deaths from respiratory diseases and is the single largest cause of occupational lung disease. There are an estimated 17,000 annual new cases of self-reported, work-related breathing or lung problems, which is why our colleagues in the Department for Work and Pensions are also helping to tackle the causes of COPD in the workplace.

[Liz Twist]

I thank the Minister for recognising that a proportion of COPD cases are caused by work-related issues, which will of course affect the north and the north-east most of all because of their industrial heritage. I assume she will tell us what steps the Department will be taking to pursue that.

Support for Carers

Liz Twist Excerpts

Thursday 22nd July 2021 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is an honour to serve under you in the Chair, Mr Hollobone. I thank the right hon. Member for Kingston and Surbiton (Ed Davey) for securing this hugely important debate.

Last month, during Carers Week, I had the very great privilege of visiting Gateshead Carers, situated in the constituency of my friend and neighbour, my hon. Friend the Member for Gateshead (Ian Mearns), but covering my constituency of Blaydon. Its chief executive, Steve Cowen, tells me that there are 25,000-plus unpaid carers across the borough of Gateshead, and that they save the council, the NHS and all of us over £500 million in care costs per year. That is an incredible figure. While I was there, I met some of the carers it works with and heard about their lives, the situations that they face, and what they need to make their lives and those of the people they care for better.

I met Ian, a carer who had been working on the association’s allotment, welcoming the chance to have some time away. Sadly, covid-19 restricted his ability to get away from home, but he is ready to get back to that now. I met Irene and Trisha, befriender and befriended, who have been talking together for over a year during lockdown, and met for the very first time on the day that I met them. Trisha had been an unpaid carer for her husband and, even after he went into residential care, was spending all her days with him in the residential home. Covid-19 meant that she was no longer able to do that. She was really missing it, and welcomed the chance to strike up that new friendship.

I met Lynne, who is a carer for her husband, an army veteran—but not so old—who told us that it had taken her some time to understand that his health meant that she was a carer. “I was just his wife”, she said, “it’s what you do.” She has realised that she is an unpaid carer, and like many unpaid carers, there comes a time when the caring takes over from what other paid work she has. She is making a huge contribution, and thankfully is now receiving support from Gateshead Carers Association. Stuart had become involved in Gateshead Carers Association as a carer, and now lends his skills to that association as a trustee while still being an unpaid carer.

I could mention so many other people: constituents who have found that they have become unpaid carers, whether for a child with disabilities, for someone who has developed dementia, or for someone who, because of illness or age, younger or older, needs that full-time caring support. Many of those carers—dare I say it—were the 1950s-born women who saw their retirement age changed as a result of legislation. They have looked after parents who need care and have given up work, only to find that when the person they care for dies they are not entitled to their pension, and have been left destitute. Covid-19 has made this worse. Less access to external support and company increases isolation, but let us be clear that, even before covid-19, things were not easy for carers, so we do not want to return to the situation pre-covid. We want to address those pre-existing conditions. Of course, for those caring for children with disabilities, the pressures have been even greater than they were before covid.

I want to say a word on behalf of my hon. Friend the Member for Worsley and Eccles South (Barbara Keeley), who hoped to be here, but is unable to. She has told me what she would have said: “I want to talk about the impact that lifting coronavirus restrictions will have on carers for people who are clinically extremely vulnerable. I have heard from unpaid carers who say they are at a loss as to how they and the people they care for are ever going to be part of society as restrictions go and they follow the clinically extremely vulnerable guidance.”

Katy Styles is a campaigner for the We Care campaign. She cares for her husband, who has motor neurone disease. She says:

“I am worried that unpaid carers’ lives will be further pushed back into the shadows and we will essentially live a twilight existence, not engaging with others, trying to stay safe, not taking any risks and being not only unheard but unseen by the rest of society. There is no end to this. No road map for us, just the very edge of the map and no coming back from there. It’s particularly tough for those caring for people with dementia or Learning Disabilities. If you are Clinically Extremely Vulnerable we know the vaccine works differently than from the whole population. We will effectively be back to shielding, but with no support and whilst the rest of the country this time cracks on.”

In the time left, I will talk about some of the things we need. Unpaid carers need proper carers’ breaks and respite care. As we have heard from other Members, we need an increase in the carers’ allowance: £67 is just not enough for the people who devote all that time. Most of all, we need a proper care plan for adult social care, so that the people for whom they are caring are able to access the support they need, and the unpaid carers can also access support. I hope that the Minister will be able to talk to us today about what would be done for carers under the adult social care system—a system that needs to be properly funded, not just to be a cap on how much an individual spends.

--- Later in debate ---

[Helen Whately]

I am very happy to meet the right hon. Gentleman to talk about that. It is about the technicalities of data, data sitting in different places, and how we can overcome that so that we have a better and common information source. Yes, I am absolutely happy to meet him.

I will come back to some of the things that we did during the pandemic, because I want to cover the topics that have been raised in the debate. We published guidance specifically for carers to try to support them through the pandemic, including on maintaining their own health and wellbeing. We provided PPE for unpaid carers who live separately from those for whom they care, in line with the clinical advice on when it is appropriate for a carer to use PPE. Crucial to all that was drawing on the experiences and insights of carers, including young carers, during the pandemic. We held a series of roundtable discussions in order to do that. Young carers frequently fly under the radar of services and community networks that would otherwise help them.

We provided extra funding to charities, including £500,000 to the Carers Trust in order to provide support to those who experienced loneliness during the pandemic, and over £150,000 to Carers UK so that it could extend its helpline opening hours in order to provide information and support to unpaid carers. We have supported initiatives for young carers, including providing over £11 million to the Sea, Hear, Respond programme, which ran from June 2020 until March 2021, in order to support more vulnerable children and young people.

We have also worked to give extra support to young carers in education. During the national lockdown, schools and colleges remained open for the children of critical workers and vulnerable children, including young carers. I recognise that if a young carer looks after somebody who is more vulnerable to covid, they will be more worried about going to school, so I am determined to ensure that, as part of our catch-up programme for children, some of the £3 billion education recovery package can be used to support young carers who have missed out on school.

I want to talk about day services, which provide essential respite for carers. It is so important that carers, particularly those who do high-intensity care, have time to see a dentist or doctor, to go shopping or to do something for themselves. Such respite is so important, and the day service or respite care is of great value to the individual who attends it. I was truly disappointed to read Carers UK’s new research report, “Breaks or breakdown”, which was published during Carers Week. It said that

“72% of carers have not had any breaks from their caring”

during the pandemic. However, many respite services and day services have not been fully operational for much of the last 16 months. I want to see the reopening of such services. That is one reason why, as part of the infection control fund, we have given nearly £1.5 billion to social care during the pandemic. One use of that fund has been to support the reopening of day services.

I know we can go further. Just last week, I spoke to local authority leaders and emphasised to them the importance of reopening day services and respite services, and I urged them to take advantage of the support that is on offer. I personally commissioned two surveys of day service provision—one last October and one in spring this year. During that period, that provision has increased; the situation in the recent report was better than last year’s, but it is not yet back to the pre-pandemic level. I will continue to work with adult directors of social services, the Ministry of Housing, Communities and Local Government and local authorities to fully understand the challenges in getting day services back to the level that they were at before.

[Liz Twist]

I very much welcome the efforts made to reopen day services. However, will the Minister accept that many local authorities already find their social care funding stretched incredibly hard and so find it difficult to maintain some of those services? Does the Minister accept that there is a funding issue here?

[Helen Whately]

Of course, there are financial pressures across public services, and more widely across our economy we face an extremely challenging time, but we have given significant extra funding to local authorities to support them through the pandemic. That is why I urge them to prioritise this issue. I emphasise the importance of the carer’s needs assessment that local authorities carry out, because that is such a crucial way of identifying what support a carer may need for themselves and their wellbeing, including the need for respite and taking a break from caring, and then making sure that that happens.

Independent Medicines and Medical Devices Safety Review

Liz Twist Excerpts

Thursday 8th July 2021 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

I thank my hon. Friend the Member for Kingston upon Hull West and Hessle (Emma Hardy) and the right hon. Member for Elmet and Rothwell (Alec Shelbrooke) for securing this important debate and the Backbench Business Committee for making it possible.

I want to talk about sodium valproate and the impact it has had on so many people, including so many children of women who were taking that drug, and I want to talk about my constituent Bethany Dodgson, a young woman affected by foetal valproate syndrome. She speaks up on this issue, and she tells me about her difficulties and the more serious difficulties experienced by her brother every day, as well as about her role as a carer in her family and how they have to live with the consequences of foetal valproate syndrome. I also want to pay tribute to Janet Williams and Emma Murphy from INFACT—the Independent Fetal Anti-Convulsant Trust—who have done so much to campaign on this issue, and to all those other women and other people who have campaigned on this issue.

It is really scandalous that we still have children being affected by foetal valproate syndrome today because their mothers were not aware of the risk of taking sodium valproate. People have campaigned, as Emma and Janet have campaigned, and they have been through records and talked to an endless number of people to try to ensure that women are made aware of the risks of taking sodium valproate, but still we see people being harmed. One year on from the Cumberlege report, “First Do No Harm”, what we have seen on this issue is one letter sent in the last few weeks to warn women of the risk. There have been attempts in previous years, with greater or lesser success, to ensure that doctors were aware and warned their patients, but much more needs to be done actively to ensure that no more children are harmed from their mothers taking sodium valproate.

I would like to talk a bit, as others have, about the recommendations of Baroness Cumberlege’s report “First Do No Harm”. The first thing is the patient safety commissioner, which has been accepted. I am aware that there is movement, but still we have further delays. We have a consultation on the role, and we have extended delays. This is a really significant and important role for the future, and I would urge the Minister and the Government to act swiftly to ensure that the patient safety commissioner is in place.

Secondly, I want to talk about having a redress agency. Going to the law is no answer for the people who have suffered from any of these syndromes. In itself, that would be further torture and a trial on top of what they already have experienced. I endorse exactly what Baroness Cumberlege said in her report: there must be an independent redress agency to stop the pain of people having to keep on fighting—fighting in law—for their rights. I hope the Government and the Minister will be able to accept that, and then individual schemes for each condition can be set up for redress. These people have already had to live for years with their views not being heard, living with the physical consequences for either themselves or their family of the drugs or treatments they have had. Please can we get on and set up this agency now? It is really vital for those people. They do not deserve to have to fight in a different place to achieve that redress, so I hope the Government will look at that.

Then there is the patient reference group. Although it has been set up, there are concerns that there is not sufficient continuing patient involvement in the work that has to go forward. I urge the Minister again to look at that, and to agree with patient groups how they can be involved in future and how we can learn the lessons about what happened to them as we go forward so that this cannot happen again.

Let us be clear: we are talking about a medical issue in medical terms, but this is a women’s issue. It is an issue of women not being listened to and their concerns not being heard, and of action not being taken. Frankly, it is just not good enough. We certainly need to learn the lessons going forward. The Government must act now and we must find a way to prevent further harm to women. As we develop and consult on the women’s health strategy, we need to make sure that we are learning these lessons and the lessons of so many other cases where the voices of women have not been heard and listened to effectively. The title of the Cumberlege report is “First Do No Harm”. It is vital that this principle is looked at when we consider the women’s health strategy.

Covid-19 Update

Liz Twist Excerpts

Tuesday 6th July 2021 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

The Secretary of State has already acknowledged the importance of dealing with the mental health problems we have seen arise in this pandemic, and it is now urgent that the issue is addressed, so when will the Government publish a clear statement on where Public Health England’s vital public mental health and suicide prevention work will sit in the new arrangements for our national public health system?

[Sajid Javid]

The hon. Lady is absolutely right to draw attention to this issue. One of the worst outcomes of all the restrictions we have necessarily had to have during the pandemic is the significant rise in depression and many other public health problems. We need to start to make tackling that much more of a priority now that we can move past what I hope is the worst of this pandemic. I want to come forward as quickly as I can with a new plan on mental health, to set out what more we can do not only to clear the backlog of cases, as it were—we need to put more effort and resources into that—but to look at what more we can do through investment in both skills and capital.

Children and Young People’s Mental Health

Liz Twist Excerpts

Wednesday 16th June 2021 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve under you as Chair, Sir Gary, and I thank the hon. Member for Twickenham (Munira Wilson) for securing this important discussion. This debate on young people and mental health is important to my constituents, many of whom have contacted me about it. As many other hon. Members have said, people come to explain their experiences and their difficulties in accessing services.

To provide some context, according to NHS Digital, in 2017 one in nine children was estimated to have a diagnosable mental health condition. That number has increased to one in six because of the covid-19 pandemic, but it is important to emphasise that the crisis existed before the pandemic. Research by University College London shows that in 2018-19, almost a quarter of 17-year-olds had self-harmed in the previous year and 7% had attempted suicide at some point in their lives. According to the Office for National Statistics, in 2017 suicide was the most common cause of death for boys and girls aged between five and 19. The figure for boys was 16.2% of all deaths, and for girls 13.3%. That is a sobering thought.

I have the pleasure of chairing the all-party parliamentary group on suicide and self-harm prevention. We have been looking at this area over the past year, including hearing evidence from organisations such as YoungMinds and from young people themselves. We received evidence that many young people who self-harm still struggle to access the support that they need in an acceptable time- frame. In fact, the NHS dashboard shows that 37% of young people—just over a third—with a diagnosable mental health condition can access NHS specialist support.

Respondents to our inquiry made it clear that the single most impactful change to improve the support available to young people who self-harm would be a system shift away from the current reliance on crisis interventions and towards a preventive model of support. However, budgets for preventive interventions have markedly reduced in recent years. Demands for specialist NHS mental health services such as CAMHS and improving access to psychological therapies has therefore increased exponentially, outstripping investment and exacerbating workforce issues. This has led to longer waiting lists, higher thresholds, and refused referrals of young people who self-harm. Even before the pandemic, people who self-harmed could struggle to access the support they needed.

There are also clear inequalities when it comes to children and young people’s mental health, with higher rates of mental health problems among young women than young men, and among LGBTQ+ young people, young people with autism and young carers. There are also clear links between mental health and race, and between mental health and financial insecurity. Experiencing mental health difficulties in childhood or adolescence can have a significant impact across the life course, and can affect young people’s educational outcomes, earnings, employment and ability to maintain relationships, as well as increase their likelihood of engaging in risk- seeking behaviour.

I want to talk about early support hubs. We need a shift towards preventive community-based interventions to urgently address the wider drivers of self-harm. That is why I support the call by the Children and Young People’s Mental Health Coalition, including YoungMinds and the Children’s Society, for the national roll-out of the early support hubs model, which would ensure that young people in every area across England can access early support for their mental health. We know that the earlier young people get support, the more effective that support will be, and the better the outcomes. Early support hubs offer easy-to-access drop-in support, on a self-referral basis, for young people who need urgent help but do not meet the threshold for children and young people’s mental health services or who have emerging mental health needs up to the age of 25. These hubs can be delivered through the NHS, in partnership with local authorities and the voluntary sector, and would offer support across areas of need. Services would include psychological therapies, employment advice, youth services and sexual health services. Finally, I stress the need for security of funding for organisations providing these services.

--- Later in debate ---

[Ms Dorries]

I am going to sit down.

[Liz Twist]

Will the Minister give way?

[Ms Dorries]

I do not think there is time.

Tobacco Control Plan

Liz Twist Excerpts

Thursday 10th June 2021 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

It is a pleasure to serve with you in the Chair, Mrs Miller. I thank my hon. Friend the Member for City of Durham (Mary Kelly Foy) and the hon. Member for Harrow East (Bob Blackman) for securing this important debate to consider smoking cessation.

I will start with a few figures, just to show why this issue is important to me. It is very difficult to get constituency figures, as I am sure colleagues have found, so we are looking at local authority areas. The covid-19 pandemic recovery makes it particularly important to set out an ambitious national strategy to tackle smoking and to address, once and for all, the tragic health inequalities that smoking causes.

In Gateshead, 17.1% of the population smokes, compared with 15.3% across the north-east. That figure is well above the England average of 13.9%. It is estimated that smoking costs Gateshead around £48.3 million a year through smoking-related health and care needs, lost productivity and premature death. Between 2016 and 2018, there were 1,227 deaths attributable to smoking in Gateshead, which is significantly higher than the per population average for England. Between 2016 and 2018 in Gateshead, there were 515 deaths from lung cancer and 412 deaths from chronic obstructive pulmonary disease. More than 80% of those disease cases were caused by smoking. Between 2016 and 2018, there were, sadly, 29 stillbirths in Gateshead, which is above the per population average for England. Smoking during pregnancy has been shown to double the risk of stillbirth.

Although adult smoking rates have declined in recent years, inequalities in smoking rates between different groups have remained stubbornly high. The next tobacco control plan must go further in providing additional quick support for smokers in communities and groups with high rates of smoking. That is essential if we are to tackle the health inequalities in our society after covid-19, and indeed before that time comes.

I support wholeheartedly the recommendation of the APPG that tobacco manufacturers should pay the costs—on the “polluter pays” principle—of creating a smoke-free 2030 fund and helping to meet that target. Indeed, it is absolutely essential that we achieve that target.

Smoking during pregnancy is the leading modifiable risk factor for poor birth outcomes, including stillbirth, miscarriage and pre-term birth. The Government’s ambition is to reduce smoking in pregnancy to 6% by 2022, but with a rate of 10.4% in 2019-20, that target is unlikely to be met. National rates of smoking in pregnancy have only declined by 0.6 percentage points since 2015, although some regions—such as the north-east, I am glad to say—have seen much larger declines. Clearly, there is much to be done.

Ensuring that pregnancies are smoke-free and that there is greater consistency across the country must be a major focus of the next tobacco control plan, if we are to deliver a smoke-free start for every child by 2030 and give them the best start in life. The highest rates of smoking among pregnant women are in young pregnant women. Nearly a third of pregnant women in England under the age of 20 are smoking during early pregnancy and at delivery, compared to around one in 10 pregnant women overall. As well as being more likely to smoke in the first place, younger mothers are less likely to quit prior to conception, whereas older mothers are more likely to have quit when planning a pregnancy. As such, driving down rates of smoking in the younger population should have a rapid impact on rates of smoking in pregnancy.

A woman’s circumstances also greatly affect the likelihood that she will smoke in pregnancy, with smoking in pregnancy concentrated among those who live in an area of deprivation or high smoking prevalence, those who live with a smoker, those who smoked through a previous pregnancy, and younger women.

There is so much more we could say on this issue, but the key thing is that we need to consider ideas such as financial incentive schemes. Those that have been implemented in Greater Manchester and south Tyneside are highly effective at reducing rates of smoking in pregnancy among women from deprived backgrounds. They are also cost-effective, with an estimated return on investment of £4 for every £1 invested.

To finish, can the Minister assure me that the next tobacco control plan will include a national strategy for reducing rates of smoking in pregnancy, learning the lessons from the areas where the greatest declines in smoking in pregnancy have occurred? Will she commit to introducing a national financial incentive scheme to achieve the aim set out in the tobacco control plan? Will she also commit to consulting on raising the age for the sale of tobacco to 21, to reduce the number of young people who become addicted to smoking?

--- Later in debate ---

[Jo Churchill]

Indeed I do. Actually, the levelling-up agenda and our manifesto commitment to ensure five more healthy life years must be driven by achieving the targets we have set ourselves. Smoking has such a direct correlation with other illnesses. My right hon. Friend the Member for Clwyd West mentioned his interest with Cancer Research UK, and we know about the link to cancer, but there is also a link to chronic obstructive pulmonary disease as well as other respiratory challenges and so on. As I say, a disproportionate burden is borne by those disadvantaged families and communities.

I thank the hon. Member for Ealing, Southall (Mr Sharma) for making an interesting point. I assure him that we are focused on the need to make these interventions local. The local directors of public health and PHE drive plans in localities. I would like to think that we have taken, and can take, much learning from the successful local interventions of the past 18 months, such as with the vaccination programme. There are also clever uses of technology, where we have prompted people to take a vaccination. That might be interesting to look at in connection with recommendation 11, to which my hon. Friend the Member for Windsor (Adam Afriyie) alluded—I think it was him—requiring people to be prompted annually. They might look at that particular behaviour in order to modify it.

I could not agree more with the person who said that data saves lives—indeed, it does. The more we understand about the data held across the NHS, the more we can use it effectively to target interventions and to ensure that people get not only the right treatment but the right care, at the right point on their life’s journey.

In the new plan, we will ensure that we have a strong focus to drive down rates across the whole country, ensuring that they are level to where rates are the lowest, because everybody deserves to live in an area where we have targeted smoking rates and are achieving success. For too long, the harms from smoking have hit those areas that already face challenges. One in 10 babies is born to a mother who smokes. It is estimated that one in five new mothers smokes in Kingston upon Hull, compared with one in 50 in west London. It is those disparities that we need to tackle.

We must also close the gap seen among smokers with mental health conditions and smokers in routine and manual occupations. Could we be cleverer? Could we work in workplaces, for example? It is vital we continue to support interventions that make the most difference, helping people to cease smoking and encouraging them to move to less harmful products.

[Liz Twist]

We have not had much time to talk about mental health in any detail. Will the Minister ensure that funding is found to deliver the original NHS long-term plan commitment to provide tobacco dependence treatment to all smokers accessing secondary mental health services?

[Jo Churchill]

If I have time, I will come on to that—I will try to speed up.

Many Members will be pleased to know that, within the plan, we will recommit to our evidenced approach to e-cigarettes. The products certainly have a role in supporting smokers to quit, and we will ensure that they remain accessible to smokers while protecting non-smokers and young people.

The fight against tobacco is not one we can win alone. It requires a joint effort through the health and care system and working across Government. There are good examples of that, because while NHS England is working to roll out the tobacco dependence treatment and the commitments in the long-term plan—we know there have been some delays—we are putting effort into driving the agenda forward, funding seven early implementer sites across England and establishing services as we speak.

Other Departments, such as HMRC, are tackling illicit tobacco. Her Majesty’s Treasury has taken action to raise tobacco taxation. We have also introduced a ring-fenced grant of £1 million to support an HMRC and trading standards intelligence cell called Operation CeCe. That was operational earlier this year. We are also working with the Department for Environment, Food and Rural Affairs on the suitability of options for littering.

I shall have to come to a close, but I will address the question of my right hon. Friend the Member for Clwyd West about how we are working with the WHO. We are a global leader in tobacco control and were instrumental in the framework convention on tobacco control. We will continue to take our treaty obligations seriously, including the commitment under article 5.3. I was particularly proud that we have been recognised in that work. The recognised commitment to our global prevention work with the WHO is important.

I hope the Chamber is aware that I am determined to protect the population from the harms of tobacco. As we build back better, we must make smoking a thing of the past, to improve the health of the nation and level up society, freeing up the billions of pounds spent on smoking by disadvantaged families and protecting the NHS. Clearly, with investment and with us all pushing in the same direction, we can truly make that target.

A Plan for the NHS and Social Care

Liz Twist Excerpts

Wednesday 19th May 2021 Commons Chamber

[Liz Twist (Blaydon) (Lab)]

For a few glorious moments at the start of the debate, I thought that I might have five minutes, but this will be the abbreviated version of my speech.

First, I want to touch on social care. Many Members have mentioned the value and importance of social care in this pandemic, which has really brought out the value of the people who provide social care and the importance of doing so. It is disappointing, therefore, to see no concrete plans being brought forward. We need a plan for social care that looks at not only caps on care costs but properly resourcing and valuing social care workers and giving them parity of esteem with NHS staff. I would also like to mention the role of unpaid carers, who have done so much to support people through this pandemic.

Secondly, I would like to look at the NHS and say a big thank you to all its staff. They deserve so much more than the 1% that the Government are suggesting is appropriate. We have seen a tremendous response from the NHS, but we know that there is a great deal of catch-up to do to ensure that people are followed up. So many organisations have contacted all of us, I am sure, about that. This morning in the all-party parliamentary group for respiratory health, we talked about the importance of catching up on lung cancer tests; it is the same with breast cancer tests. I also want to draw attention to the need for mental health treatment to be improved and caught up with, as too many people have lost out.

I turn briefly to public health. I heard the Secretary of State talk about public health, but we need not just talk, but action and funding. The pandemic has shown the real value of public health, which we know lies behind so many other issues. It is important that we have an effective local public health system. That links to my next point, which is really about child poverty. End Child Poverty has today produced a set of figures that sadly shows that child poverty has increased in the north-east, where my constituency is. More than 4,300 children in my constituency are living in poverty. That must be addressed. We need to retain the £20 universal credit uplift, expand it to legacy benefits and focus on child benefit.

There is so much more that I would like to say about planning reform and accessible housing, but I do not have time. I end by commending the hon. Member for Aberconwy (Robin Millar) on his maiden speech, which showed that he knows his constituency well and cares about it; I wish him well in his future career.

Covid-19 Update

Liz Twist Excerpts

Monday 17th May 2021 Commons Chamber

[Matt Hancock]

I have just waxed lyrical about the value of Scotland working with the UK Government and of Northern Ireland working with the UK Government, and my hon. Friend almost chastises me for not mentioning Wales. Of course working with Wales is incredibly important—look at the Wockhardt fill-finish plant. The number of people who have been vaccinated in this country with a product that is manufactured in Wales measures in the tens of millions, including me. We should all be very proud of that, and I look forward to working with my new Welsh counterpart, the Minister for Health in Wales, and making sure that we use all capabilities across these islands to get us back on the road to recovery.

[Liz Twist (Blaydon) (Lab)]

Today sees the long-anticipated lifting of many of the restrictions on our life and social life. At the same time, this strain of the virus reminds us that we need to be cautious in how we mix and how we hug our loved ones. It is important that we have clear messages about interaction, so will the Secretary of State ensure that Government messages are clear, unambiguous and not mixed, as at present?

[Matt Hancock]

It is really clear that we are removing restrictions. I am delighted that we are able to remove restrictions, such as the absolute restrictions on close physical contact, and rely more on people’s personal responsibility. In order to do that, we are providing the best possible advice that we can, such as to hug, but cautiously. Everybody knows what that means: it means outside is better than inside, it means making sure it is in ventilated spaces and it means that those who have had the vaccine, and in particular two vaccines, are safer than those who have not.

It is incumbent on us all to communicate these messages from our scientists and to make sure that people understand them. I am pretty sure that the British public get that. Given how brilliantly people have responded to requests during the pandemic, I am highly confident that this approach will be successful and that people will be cautious, but enjoy the new freedoms that we are thankfully able to give.

UK Rare Diseases Framework

Liz Twist Excerpts

Wednesday 24th March 2021 Westminster Hall

[Liz Twist (Blaydon) (Lab)]

I beg to move,

That this House has considered the implementation of the UK Rare Diseases Framework.

It is a pleasure to serve under you in the Chair, Mrs Miller. About one in 17 people will during their lifetime be affected by a rare condition. Around 70% of such conditions begin in childhood and are lifelong. Genetic Alliance UK estimates that rare diseases are responsible for about one third of infant mortality in the UK. Those living with a rare condition can face significant challenges in getting a diagnosis, getting access to treatment, and receiving co-ordinated care, as well as challenges with employment, education, social life and mental health.

The UK rare diseases framework, which was published earlier this year, presents an opportunity for the rare diseases community. There is hope that the framework will enable people living with rare, genetic and undiagnosed conditions to get access to the appropriate care and the treatment that they need to manage their condition. However, we have been here before. In 2013 the UK strategy for rare diseases was published, with the promise that no one would be left behind just because they have a rare disease. When the strategy expired last year, people living with rare conditions were confused and disappointed. Although the strategy had made some progress, it had failed in its commitment to transform the lives of all those affected by rare conditions.

A major factor that prevented the true potential of the strategy from being realised is the long delay from the Department of Health and Social Care or NHS England in developing and publishing an implementation plan. The strategy was published in 2013, yet an implementation plan for England was delivered only in 2018. Not only did that prevent progress in England; it also stymied developments in the devolved nations, which were unable to collaborate effectively without a plan. As yet, the Department of Health and Social Care and NHS England have not published the outcome of the strategy. If we are to learn from the mistakes of the past, we must evaluate what happened with the strategy. Will the Minister comment on whether the Department of Health and Social Care and NHS England will in fact report on the outcome of the strategy?

The UK rare diseases framework is the beginning of a new chapter. For it to be implemented effectively, the Department of Health and Social Care and NHS England must work together to deliver a timely and comprehensive action plan. That action plan is needed now more than ever because the rare diseases community has been waiting long enough for improvements in care and treatment. The pandemic continues to bear heavily on the health and wellbeing of those with rare conditions, who are among the most vulnerable to covid-19 impacts. There is a gap in detailed policy to drive improvements for people living with rare conditions in the UK, until action plans are published to implement the framework.

The framework covers four key areas and seeks to make progress. The first priority is to help patients to get a final diagnosis more quickly. On average, rare disease patients wait four years to receive a diagnosis, with some waiting over 20 years. For people with a rare condition, it is often a long journey, frequently with several misdiagnoses, until a final correct diagnosis is reached. Often this journey is labelled as the diagnostic odyssey. The framework describes what is already happening to improve diagnosis, but it does not talk about improving the screening service for people living with rare conditions. The UK National Screening Committee currently screens for just nine conditions using the heel-prick test. That compares poorly with many European countries: Italy and Iceland screen for more than 40, Poland and the Netherlands screen for more than 30, and Hungary, Slovakia and many others screen for more than 20 conditions.

Earlier this month, the National Institute for Health and Care Excellence approved access to a new gene therapy for spinal muscular atrophy. NICE said that for some babies who are diagnosed before they have symptoms, it might come close to being a cure. For it to have the chance to be a cure, however, we need to identify the babies before they begin to be affected by the condition. To do that, we need newborn screening for spinal muscular atrophy. We need joined-up thinking that allows a screening programme to be developed in parallel as such medicines come over the horizon. Will the Minister confirm whether we will increase the scope of newborn screening in the UK or make changes to the UK National Screening Committee’s processes?

The framework also talks about Genome UK and the NHS genomic medicine service helping patients to get a final diagnosis more quickly, but it does not talk about how patients will access such services. The framework recognises that people with non-genetic conditions needs to be diagnosed through other means. We will need an action plan that sets out a realistic way to improve this, and we will need to demonstrate that the system becomes better at diagnosing everyone, not just those who are found through genome sequencing. Can the Minister confirm that that will be done?

Moreover, the framework does not talk about what happens after a diagnosis is delivered. We cannot abandon people after we have given them their diagnosis. My final point on diagnosis is this: what about the people who are stuck on the diagnostic odyssey? Do we know how many people have been waiting for five, 10 or 20 years for a diagnosis from the NHS? Will we track such people? Will we monitor whether everyone is receiving equitably the tests to which they are entitled? Will the Minister please comment on that?

The second priority of the framework is to increase awareness among healthcare professionals of rare diseases. People affected by rare conditions meet many healthcare professionals on their journey to find a diagnosis, and beyond while they live with their rare condition. For some it is a positive experience; for others it can be particularly challenging. This year, Genetic Alliance UK received an inquiry from an individual whose GP had told them that they could not possibly have the genetic condition that they were concerned about, because it is just too rare. Any individual clinician cannot be expected to know about all rare conditions, but they can be empowered to understand how to handle such cases. The framework does not address in detail how it will increase awareness among healthcare professionals of rare diseases. It does not provide details of how education programmes will be delivered, nor does it explain in detail how success will be measured. What measurements will be put in place to ensure learning for healthcare professionals in the NHS? Will there be a survey of experience now and in the future, to demonstrate improvement? Will that be included in the English action plan?

When clinicians do not engage with an individual who has a rare condition in order to understand their diagnosis and ensure that care is compatible with their needs, it can and has led to life-threatening situations. One way to prevent such situations from occurring is by providing rare disease patients with alert cards, which include information about the patient’s rare disease and any particular aspects of the treatment of that rare disease that need to be taken into account in providing care. In January 2018, NHS England promised that all rare disease patients in England would have access to a rare disease alert card. May I request an update from the Minister on alert cards specifically? How many rare disease patients have been issued with an alert card?

The third priority of the framework is to improve co-ordination of care. Many patients have numerous professionals involved in their care and therefore it is essential that there be co-ordination and communication among healthcare professionals, their patient and the family. The framework does not address how care co-ordination can be mainstreamed within rare condition care in the NHS. There are no details as to how the challenges of ensuring continuity of care during the complex transition between rare condition services might be addressed. Again, how will success be measured? Will there be outcome measures demonstrating increased care co-ordination services in the NHS, and will there be a survey now and in the future to demonstrate improvement in the experience of people living with rare and genetic conditions?

The final priority of the framework is to improve access to specialist care, treatment and drugs. Only about 200 medicines are specifically available for rare conditions, and fewer than that are available on the NHS now. Small patient populations and accelerated market authorisation mean that rare disease medicines can rarely have sufficient evidence to meet the expectations of health technology assessors in the UK. Few life-saving treatments are reaching rare disease patients, which means not only that the UK is falling behind other European nations in terms of treatments available, but that patients and their families can be left in the dark, unsure of what is next.

We have extremely frustrating situations such as that faced by families affected by phenylketonuria, who, 12 years after marketing authorisation for the drug, are not receiving access to Kuvan, despite the Prime Minister’s promises to work on the issue and the treatment being available in 24 European countries. Again, the framework does not talk about how success will be measured. Will there be outcome measures demonstrating increased access to specialist care, treatments and medicines, and will there be a survey now? Will the Minister comment on that?

My final point is this. Understanding the experiences and preferences of people affected by rare conditions is fundamental to providing care and treatment and to ensuring that support, information and services are available and targeted to meet needs. The national conversation on rare diseases on which the UK rare diseases framework is based does not reflect the whole rare disease community. It is important that the English action plan is created in consultation with a more diverse and inclusive group, so that we can understand and meet the needs of all those affected by rare, genetic and undiagnosed conditions.

I want to finish by talking about something that happened yesterday. I want to mention Norman Clayton, who watched Prime Minister’s questions last week and heard me ask my question on access to Kuvan for those with PKU. Norman is 91 years old and was moved, after all these years, to contact NSPKU—the National Society for Phenylketonuria—and tell us about his daughter, Denise, who was born in 1958, before newborn screening, and whose PKU was diagnosed late. Despite the best efforts of Norman and his wife, Denise’s development suffered and she disappeared off the radar of the NHS. She still requires a huge amount of care, because her condition was not recognised from birth. That story speaks to so many rare diseases and to the need to get the implementation of this framework right.

[Mrs Maria Miller (in the Chair)]

We now move to a three-minute time limit, to help as many hon. Members as possible to participate.

--- Later in debate ---

[Liz Twist]

I thank the Minister and all hon. Members who took part in the debate. The diseases we have mentioned—motor neurone disease, muscular dystrophy, PKU, thalassaemia, neurofibromatosis and Batten disease —are all important, but there are so many more rare diseases that we could have mentioned. I look forward to the Minister’s detailed reply, and I will certainly circulate it to all those Members who have taken part today.

Question put and agreed to.

Resolved,

That this House has considered the implementation of the UK Rare Diseases Framework.