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Category: Health

  • Chris Stephens – 2023 Speech on World Down Syndrome Day

    Chris Stephens – 2023 Speech on World Down Syndrome Day

    The speech made by Chris Stephens, the SNP MP for Glasgow South West, in the House of Commons on 23 March 2023.

    I congratulate the right hon. Member for North Somerset (Dr Fox) on securing this debate, and on the passage of his Act. I enjoyed his contribution this afternoon, advocating for individuals in the Down syndrome community. I assure him that I was at the parliamentary event on Wednesday, and there were people from Scotland down in the Lobby discussing some of those issues. It was a privilege to be there. It is also a privilege to be an elected representative, and one of the privileges that come with that is that we meet those we represent who speak truth to power. On Saturday, my constituent, Danielle Urie, came to see me at my Ibrox surgery. She asked me to participate in this debate, which is why I am here this afternoon. I asked Danielle to write to me about some of the things she wanted to say, and after the exchange I had with the right hon. Gentleman about diagnostic overshadowing, I am afraid that, sadly, there is an example of that coming up.

    Danielle is currently going through the complaints procedure with the health service in Scotland to discuss some of this. I asked her, and her son Steven, to go through their experiences, and I will read what Danielle sent to me last night:

    “My name is Danielle Urie. If my son Steven could speak, I’m sure this is what he would say. ‘My name is Steven I am 11 years old. From 2019 to 2021 I was diagnostically overshadowed by doctors which resulted to damage in my body that can never be reversed, while sitting in chronic pain and bleeding for two years. I am now left with a permanent stoma and my large bowel being completely removed. During this time I had been treated with no respect, and left with no dignity.’ If Steven was a typical child who could voice for himself I don’t think any of this would have happened. I want you to all know the catastrophic consequences that can happen with diagnostic overshadowing, because it’s real and it happens more than you all think. To have no control on what happens with your child’s healthcare is terrifying . I don’t want my child or any child in fact to be added to the statistics of people with Down’s syndrome dying as a result of being diagnostically overshadowed.”

    I want to thank Danielle for having the bravery to write to a Member of Parliament to share that particular experience.

    The right hon. Gentleman invited us to talk about what is happening in other devolved nations, and I have some constructive criticisms about what is happening in Scotland. I do not think that everything is wrong with what the Scottish Government are doing, but I have some comments to make. The Scottish Government’s position is that they take a wider view and are committed to introducing the learning disability, autism and neurodiversity Bill as part of their programme for government. There are opportunities there. In delivering the Bill, the Scottish Government want to improve opportunities, outcomes and support for people with Down’s syndrome.

    There will be a consultation on the Bill later this year. I will certainly be assisting Danielle, and any others, as a part of that. It will provide an opportunity for people to view the policy options that could be included in the draft Bill, including whether it should establish a commissioner. As part of their scoping work, the Scottish Government ran events with a wide range of Scotland’s disabled people-led organisations and national charities. The Scottish Government are working towards a human rights-based approach to ensure the Bill is fully co-designed with people who have lived experiences. It is very important, when shaping legislation, that people with those lived experiences are involved from the outset.

    I would like to see the words “Down’s syndrome” included in the title of the Bill. I think that would be welcomed by those who came down from Scotland to the event in Parliament on Tuesday. Why do I think that is important? People with Down’s syndrome are more likely to be born with a heart condition and more likely to get leukaemia. People in the Down’s syndrome community are more prone to infections and thyroid problems, and more susceptible to eye and hearing problems. We want to ensure that those with Down’s syndrome get extra health checks, for example, and have access to speech therapy. It is very important that people with Down’s syndrome have those opportunities. Those are some of the reasons why I want the Down’s syndrome community in Scotland have the words “Down’s syndrome” in the title of the Bill. I will be working with Danielle and others to ensure that that is the case.

  • Neil O’Brien – 2023 Speech at Policy Exchange on Smokefree 2030

    Neil O’Brien – 2023 Speech at Policy Exchange on Smokefree 2030

    The speech made by Neil O’Brien, the Minister for Primary Care and Public Health, at Policy Exchange in London on 11 April 2023.

    It’s an enormous pleasure to be here today at Policy Exchange to set out the government’s next steps on vaping and smoking.

    Everybody agrees that we must do more to prevent ill health in the first place – not just treat it afterwards.

    Cutting smoking is one of the most evidence-based and effective interventions that we can make.

    That’s why in 2019, this government set the bold ambition for England to be Smokefree by 2030 – reducing smoking rates to 5% or less.

    Everyone knows about the health impact of smoking.

    It’s still the sadly the single biggest cause of preventable illness and death in England.

    Up to two out of three lifelong smokers will die from smoking.

    Cigarettes are the only product which will kill you if used correctly.

    The positive impact of stopping smoking is immediate. For those who quit, after just a few weeks lung function increases by up to 10% and circulation improves, and the risk of heart attack is half that of a smoker after one year of quitting.

    The person who quits today is the person who isn’t in a hospital bed next year. So, cutting smoking will help us hit the fourth of the PM’s five priorities – to cut waiting lists.

    But as well as the health impact, the economic impact of smoking is also huge.

    The excellent 2010 Policy Exchange paper ‘Cough Up’ noted that – “it is a popular myth that smoking is a net contributor to the economy”

    In fact new analysis from ASH on the costs of smoking in the UK in 2022 found that smoking has a £21 billion total cost to the public purse.

    To talk you through that – people used to argue that although there was a cost to the NHS from smoking, the taxes paid offset this.

    But this ignores the fact that smokers are more likely than non-smokers to become sick and be out of work, and more likely to stay unwell for longer. Smokers are absent for an average of 2.7 more days per year than non-smokers.

    Reducing smoking rates not only improves health outcomes and reduces the burden on the NHS, it also boosts productivity and economic growth too.

    Current smokers are 7.5% less likely to be employed compared to never smokers and ex-smokers are 5% more likely to be employed than current smokers.

    In places like Birmingham, an additional 6,000 people are out of work because of smoking. Quitting could help to put that right.

    As well as the productivity impact, quitting smoking would save the average person around £2,000 a year.

    In poorer parts of the country going smokefree could mean far more money circulating in the local economy. There is a positive productivity benefit but also helps to level up across the nation.

    Today, as well as tackling smoking, I also want to start to address a new threat… the growth of vaping among children.

    There has been a very sharp increase in children vaping – particularly disposable vapes. NHS figures for 2021 showed that 9% of 11- to 15-year-old children used e-cigarettes, up from 6% in 2018. That’s a rapidly rising trend we need to stop.

    Whether it’s disposable vapes marketed to kids with bright colours, or low prices, or cartoon characters or child-friendly flavours…

    …Or indeed products being sold that don’t meet our rules on content.

    Today we step up our efforts to stop kids getting hooked on vaping. My message is this: if your business plan relies on getting kids hooked on nicotine, we are coming for you.

    So today I will set out

    • What we will do to stop children and non-smokers from starting vaping…
    • How we will exploit the potential of vaping as a powerful tool to stop smoking.
    • … And how we will help more people quit smoking, particularly where rates are highest.

    I’d like to thank Javed Khan for his independent review which has helped inform many of our next steps.

    And I’d also like to thank Bob Blackman in his role as the Chair of the All-Party Parliamentary Group (APPG) on Smoking and Health, who has been a hugely positive advocate for keeping smoking on the public health agenda.

    Let me start with vaping.

    We need to do two things:

    On the one hand, stop children taking up vaping.

    On the other, exploit the huge potential of vaping to help adult smokers to quit…

    NHS figures for 2021 as I mentioned showed that 9% of 11- to 15-year-old children used e-cigarettes in 2021 – that’s a rising trend.

    Dr Mike McKean, vice-president of policy for the Royal College of Paediatricians and Child Health, has estimated that prevalence may well be even higher now.

    I think many of us as parents worry about our kids’ health, about them getting addicted to nicotine. The Chief Medical Officer who is here today has also raised concerns about children vaping. I also pay tribute to my colleague Caroline Johnson who highlighted this issue.

    That’s why today, as part of work on stopping people starting smoking and vaping, we are opening a specific call for evidence on youth vaping to identify opportunities to reduce the number of children accessing and using vape products – and explore where the government can go further. We will look at where we can go beyond what the EU’s Tobacco Products Directive allowed us to.

    This will explore a range of issues including how we ensure regulatory compliance, look at the appearance and characteristics of vapes, about their marketing and promotion of vapes, and the role of social media which is crucial. It will also seek to better understand the vape market, looking at issues such as the price of low cost products and disposables.

    We are also working closely with colleagues at the Department for Environment, Food and Rural Affairs (Defra) to consider the environmental impact of vapes – particularly disposable vapes which have become so appealing to young people. In 2022, 52% of young people who vaped were using disposable products, compared to just 8% in 2021.

    Over 1.3 million disposable vapes are thrown away each week. This accumulates to 10 tonnes of lithium a year, equivalent to the lithium batteries of a staggering 1,200 electric vehicles.

    The call for evidence will be open for the next 8 weeks.

    We hope that everyone concerned will take this opportunity to share their views to help shape our future approach particularly for our young people.

    We are already taking action to enforce the current rules.

    I was extremely concerned to hear of certain disposable vaping products that don’t adhere to our regulatory standards. There has been a particular issue about the Chinese-made “Elf Bar”.

    Working closely with the MHRA and Trading Standards we have agreed a voluntary withdrawal of some of these products from the UK market. Some large supermarkets like Tesco are setting a good example by working across their distribution network and ensuring all their products meet the requirements.

    I urge the rest of the retail sector and vape manufacturers to follow suit and to  our vaping product rules. If they do not do this, it could result in an unlimited fine. Companies failing to comply with the law will be held accountable.

    To that end today I can announce that we will go further to enforce the rules.

    Working hand in glove with our enforcement agencies and learning from our work with Trading Standards on illicit tobacco, we will provide £3m of new funding to create a specialised “flying squad” to enforce the rules on vaping and tackle illicit vapes and underage sales.

    This national programme will help share knowledge and intelligence across regional networks – including on organised crime gangs.

    It will bolster training and enforcement capacity in Trading Standards and undertake specific projects such as test purchasing in convenience stores and vape shops. We will produce guidance to help build regulatory compliance. We will remove illegal products from shelves and at our borders, and we will undertake more testing to ensure compliance with our rules.

    But while we want to make sure children don’t take up vaping, vaping can play an important role in helping the government achieve its Smokefree 2030 ambition.

    Vaping is effectively a double edged sword. On the one hand, we do not want children to develop an addiction to any substance at a young age.

    But on the other hand for adults, vaping is substantially less harmful than smoking and we now have high quality evidence from Oxford University that compared to nicotine gum or patches vapes are significantly more effective as a quit tool, but not more hazardous.

    This is particularly true when they are combined with additional behavioural support from local stop smoking services.

    Vaping is already estimated to contribute to about 50 – 70k additional smoking quits per year in England.

    However, vapes are not yet being used widely enough to reach their full potential as smoking quit aids, showing the potential power of it as a tool.

    A “swap to stop” partnership is a scheme where smokers are provided with a vape starter kit alongside behavioural support to help them completely stop smoking.

    There have already been successful local pilots of ‘swap to stop’ schemes in many areas, such as in Bath, Southampton, Sheffield, and Plymouth…

    Learning from these proven effective pilots, today, I am delighted to announce that we will be funding a new national ‘swap to stop’ scheme – the first of its kind in the world.

    We will work with councils and others to offer a million smokers across England a free vaping starter kit. Smokers who join this scheme which will run initially over the next two years must join on one condition – they commit to quit smoking with support. For our part we will make it as easy as possible, referring people to stop smoking services and developing a digital approach to help people quit smoking. Once that is done, we will offer support to those who want to go on to quit vaping too.

    We will target the most at-risk communities first  – focusing on settings such as job centres, homeless centres, and social housing providers. And we want to work with retailers on this journey too.

    Among the first of these exciting projects will be in the North East. I have already been working with local councils in Northumberland, Gateshead, South Tyneside and Hartlepool to start a joined-up delivery of a ‘swap to stop’ scheme in their most deprived neighbourhoods.

    This scheme represents an exciting opportunity to capitalise on the potential of vaping as a tool to help smokers quit.

    The latest international research shows that smokers who use a vape every day are three times more likely to quit smoking, interestingly, even if they didn’t actually intend to quit smoking.

    So we will offer a million smokers new help to quit.

    Let me now turn to other steps we will take to stop smoking and start quitting.

    And let me start with our next steps to tackle illicit and underage sales.

    Taking action against those who break the rules firstly protects legitimate shops from being undercut.

    But we also know that this is very important to stop underage people starting smoking, because illicit tobacco and underage sales are strongly linked.

    We’ve already implemented a successful new UK-wide system of track and trace for cigarettes and hand rolling tobacco to deter illicit sales.

    This system requires all cigarettes and hand rolling tobacco to be tracked right from the manufacturer to the first retailer using unique ID codes applied to the products.

    Track and Trace will be extended to all tobacco products in May 2024. This means not only will we track cigarettes and hand rolling tobacco but also cigars, cigarillos, shisha and other tobacco.

    ‘Operation CeCe’, a UK-wide intelligence hub between HMRC and National Trading Standards, has also bolstered our efforts against illicit tobacco, and we have given it long term funding.

    Operation CeCe resulted in more than £7 million worth of illegal tobacco products being removed from sale in its first year, and prevented far more illegal activity.

    HMRC are also introducing tougher additional sanctions to track and trace to deter repeat offending, including a new civil penalty of up to £10,000 for more serious offences.

    I can also announce that this year, HMRC and Border Force will be publishing an updated strategy to tackle illicit tobacco.

    It will lay out strategically how we continue to target, catch and punish those involved in the illicit tobacco market.

    If you supply tobacco for sale in the UK you must be registered for Tobacco Track and Trace and also obtain an Economic Operator ID.

    We want to start using this existing system in a new way – to help strengthen enforcement and target the illicit market.

    From now on where people are found selling illicit tobacco, we will seize their products, we will remove their Economic Operator ID and they will no longer be able to buy or sell tobacco.

    We are also exploring how to share information with local partners about who is registered on the Track and Trace system, so they know who is and who isn’t legally entitled to sell tobacco in their local areas, helping to drive enforcement.

    Now of course some would go further to stop people to start smoking in the first place. The Khan Review last year advocated the New Zealand approach – a full phase out of smoking, with the age of sale increasing over time to cover all adults.

    This would be a major departure from the policy pursued over recent decades which has emphasised personal responsibility and help for people to quit. And it is the help for current smokers to quit that we want to focus on.

    And, there is much more we can do to help people quit smoking.

    Over half of all smokers – that’s 3 million people – want to quit smoking. One million of these people want to quit in the next three months.

    But nicotine is highly addictive. We know that 95% of unsupported quit attempts relapse within a year.

    So we will do more to help people quit.

    First, we will use the latest treatments – proven to give smokers a much greater chance of quitting.

    Some of the most cost-effective treatments that we have are not currently available in England. We are working closely with suppliers to give access to prescribers, to put licensed medications in the hands of those who would benefit the most from them. For example, ensuring the availability of proven smoking cessation medicines such as Varenicline and Cytisine. We have been working urgently with business to unblock supply chain problems to support more people who want to quit.

    Second, we’ll join up services through the new Integrated Care Systems, to make the NHS more like a national prevention service.

    The pioneering work being done by the Humber and North Yorkshire Integrated Care Board – is leading the way in devoting local health service resources, organising the local system to have a local voice in driving down smoking rates in their most deprived communities.  In April – this month – they will ‘go live’ with their comprehensive tobacco control program. They will go first in implementing many of our national plans, including the provision of incentives for pregnant women to stop smoking, providing vapes as a first line quit aid in local stop smoking services, lung health screening and joining up local services to tackle illicit tobacco.

    I encourage all other ICBs to follow their example and develop similar partnerships with local authorities to create effective tobacco control programs. This is a really good example of integrated care systems working together to drive prevention.

    Third, we’ll help pregnant women quit. Nationally 9% women still smoke in pregnancy – but it affects as many as nearly one in four births in some areas. Of course smoking in pregnancy increases the risk of stillbirth, miscarriage, and sudden infant death.

    All maternity services in England are establishing pathways to ensure rapid access to stop smoking support for all pregnant women. We’ve already rolled out carbon monoxide testing widely to mothers.

    Recently financial incentive schemes have been proven effective to increase the number of pregnant women successfully quitting. In trials women receiving financial incentives are more than twice as likely to quit. The return on investment for these schemes is £4 for every £1 invested.

    These schemes have been effective in a number of local areas, including Greater Manchester, which has seen the biggest drop-in maternal smoking rates over the last two years.

    So today we build on that local evidence and I’m announcing that we will offer a financial incentive scheme to all pregnant women who smoke by the end of next year.

    This will unlock a lifetime of benefits for the child and the mother.

    Fourth, we will provide further help for people with mental health conditions to quit.

    Smoking is more than twice as high in people living with mental health issues. They will die 10 to 20 years earlier, and the biggest factor in this is smoking.

    It is a common misconception that smoking helps anxiety. Actually smoking exacerbates anxiety and depression. Quitting smoking has been proven to be as effective as taking anti-depressants.

    So we will work with mental health services to improve the signposting to evidence based support for smokers. At a minimum, all mental health practitioners will be able to provide signposting to specially developed, evidence based, digital quit resources.

    Fifth, to help people quit, we will use a new approach to health warnings.

    The front of cigarette packs has contained ‘smoking kills’ warnings since 1991. We will continue this, but we also want to give people hope and connect them in a hassle-free way to the best offer of support.

    We will consult this year on introducing mandatory cigarette pack inserts with positive messages and information to help people quit.  In Canada, health promoting inserts are required by law and have been in place since 2000. Evidence from the experience in Canada shows pack inserts are an effective measure to increase the number of people attempting to quit smoking.

    We have commissioned the University of Stirling to undertake testing with UK adult smokers and young people to help get this right.

    We are exploring how best we can use innovative approaches within this, such as the use of QR codes to make it as easy as possible for people to get help to quit.  You could take a pic with your phone and be taken straight to stop smoking support, the kind I’ve been talking about in this speech.

    In conclusion, the evidence is overwhelming that stopping smoking not only has major health and economic benefits.

    It is crucial to extending healthy life expectancy, particularly levelling up the places it is lowest.

    That’s why today we’re:

    • Stopping the growth of vaping among children
    • Introducing new help for a million smokers to quit.
    • Increasing enforcement of illicit sales
    • Expanding access to new treatments.
    • Backing joined-up, integrated approaches
    • Rolling out a national incentive scheme to help pregnant women quit,
    • Consulting on new pack inserts using modern technology

    All these are ways we will help people quit.

    These proposals to reach our goal of a Smokefree 2030 are some of the most innovative in the world.

    They will give more people the help that they need to quit smoking for good.

    So thank you to all of the experts in the room today that have fed in ideas to inform the speech today – and I look forward to your questions.

  • Rob Roberts – 2023 Speech on Immigration and Nationality Fees – Exemption for NHS Clinical Staff

    Rob Roberts – 2023 Speech on Immigration and Nationality Fees – Exemption for NHS Clinical Staff

    The speech made by Rob Roberts, the Independent MP for Delyn, in the House of Commons on 20 March 2023.

    I beg to move,

    That leave be given to bring in a Bill to exempt NHS clinical staff from the requirement to pay fees under section 68 of the Immigration Act 2014; and for connected purposes.

    I declare a partial interest for the avoidance of doubt, as my fiancé is a healthcare professional from overseas. However, he already has his British citizenship, so would derive no benefit from this Bill whatever.

    The NHS is a fundamental part of British life, as it has been for decades. It has been under a particular spotlight for the past couple of years as we have battled with the most significant public health crisis in our lifetimes, and right hon. and hon. Members from all parts of the House have spoken at length about the debt we owe to the NHS clinicians who put themselves in harm’s way to make sure they could provide healthcare to the rest of us, who rely on them so profoundly.

    I have spoken on this topic several times both in the Chamber and in Westminster Hall, and last year I tabled an amendment to the Nationality and Borders Bill to exempt NHS clinical workers from paying the fees associated with applying for indefinite leave to remain. I discussed the amendment with the Minister at the time, the hon. Member for Corby (Tom Pursglove), as well as with the hon. Member for Torbay (Kevin Foster), who had responsibilities in this area. I was told that the amendment, which was unusual in this House in having signatures and support from Members from six different parties, was not acceptable to the Government because we could not make special cases out of certain groups of people. Shortly afterwards, as the Bill was making its way through the House of Lords, the Government announced that armed forces veterans would be exempted from paying fees for ILR applications. I thought that was interesting, given that NHS workers had not been worthy of a special classification just a couple of months before.

    The Home Secretary at the time, the right hon. Member for Witham (Priti Patel), said:

    “Waiving the visa fee for those Commonwealth veterans and Gurkhas with six years’ service who want to settle here is a suitable way of acknowledging their personal contribution and service to our nation.”

    To take nothing away from the veterans who have put their lives on the line in service of the country and the Commonwealth, we would be hard-pressed to find many members of the public who do not believe that our NHS clinical staff are worthy of the same consideration.

    While the entire NHS played a vital role, our thanks and gratitude should go in particular to NHS workers who have come from other countries. Those individuals have travelled huge distances to be here, are often separated from their families, and have put their own lives at risk to help and save our lives—citizens from a different country to their own. Regardless of their or our citizenship, the duty and responsibility to care and contribute to the wellbeing of others always comes first for them. It is amazing, and it should be highly commended.

    I welcome the many steps that the Government have already taken for foreign NHS workers, including the health and care worker visa and the exemption from the immigration health surcharge, but we need to go further. These people want to make the UK their home. They have put down roots, and we have a duty to put in place a framework that allows them to do just that, without thousands of pounds-worth of costs just to stay in a country to which they have already contributed so much.

    With fees for indefinite leave to remain at more than £2,400 and citizenship applications costing another £1,800 or so, plus another few hundred for biometrics, English language tests and all the supplementary things that need to be done, the total cost of the naturalisation process is more like £5,000—among the highest in the world. The process of becoming a citizen for our NHS workers is costly and challenging, and includes the ridiculous “Life in the UK” test, which asks questions about such useful topics as the Great Exhibition of 1851 and which British actors have won Oscars recently. Quite how anyone could be expected to integrate into British society without that pivotal knowledge remains a mystery.

    Doctors, nurses, physiotherapists, occupational therapists, psychiatrists and all manner of clinicians come to our shores to work in the NHS. They pay their taxes every month. They work in intensive care units, high dependency units, paediatric cancer centres and in everything from obstetrics and neonatal units to geriatrics and palliative care. They spend their working life in this country saving lives, and that was especially so during the pandemic. They have to take out loans to pay for their residency applications. As I have said a number of times before, we should not be driving them into debt; we should be in their debt.

    It is our duty to create a new route to citizenship for NHS clinicians—one that will not leave workers in debt, in poverty or in constant worry about funding their next application—by abolishing the costs associated with applying for indefinite leave to remain and citizenship for NHS clinical workers. There would obviously have to be some caveats, in that those workers would need to have worked in the NHS for at least three years and would also need to commit to remaining in the NHS for at least a further three years; otherwise, the fees that they would have paid would become due. That is necessary to stop people gaining the benefit that I hope would benefit clinicians in our NHS, then deciding to go into the private sector immediately after they have received their right to reside. That would be counterproductive to what I am trying to achieve.

    I am proud that our NHS attracts such global talent and recruits from around the world; quite frankly, we would not be able to run it without them. In 2021, over 160,000 NHS staff from over 200 different countries stated that they were a non-British nationality, accounting for nearly 15% of all staff for whom a nationality is known. However, the current fees and process is a huge barrier for both future NHS workers, who are put off coming to the UK to fill our many vacancies, and current NHS workers, who are unable to afford the final step and receive the permanent residency that they have earned through their service to our country.

    Residency and citizenship should not be about cost—whether a person can afford it—but about contribution and inclusion in our communities. NHS workers have perhaps made the biggest contribution of all, saving our lives and keeping us safe. Despite being such valued members of the communities in which they live and work, without being citizens they struggle to be fully part of those communities. Without ILR, individuals face barriers to home ownership, as it is almost impossible to get a mortgage, as well as barriers in higher education and so many other aspects of life. Therefore, scrapping the fees would not only make residency and citizenship more affordable and a viable option for foreign workers in our NHS, but would create a more diverse and, crucially, a more integrated society.

    People from other countries who have worked in our NHS during this pandemic and throughout their lives deserve to be able to call the UK their home, and actually feel as though it is. The pandemic had one benefit, in that it highlighted what many of us already knew: that our NHS workers, whether British or not, are the backbone of our health service and our country. Those who have come here to provide such incredible care should not be penalised for it, but currently, the high application fees do just that. In conclusion, it is time to abolish the fees for indefinite leave to remain and citizenship for those clinical staff who work in our NHS, so that those who spend time helping and treating us can finally feel like they belong, and are welcomed in our country with open arms.

    Question put and agreed to.

    Ordered,

    That Rob Roberts, Dr Philippa Whitford, Martyn Day, Margaret Ferrier, Ben Lake, Sarah Atherton, Mark Fletcher, Henry Smith, Jim Shannon and Claudia Webbe present the Bill.

    Rob Roberts accordingly presented the Bill.

  • Diana Johnson – 2023 Parliamentary Question on Compensation Payments for Infected Blood Victims

    Diana Johnson – 2023 Parliamentary Question on Compensation Payments for Infected Blood Victims

    The parliamentary question asked by Dame Diana Johnson, the Labour MP for Kingston upon Hull North, in the House of Commons on 16 March 2023.

    Dame Diana Johnson (Kingston upon Hull North) (Lab)

    5. What progress his Department has made on providing compensation payments to infected blood victims. (904106)

    The Minister for the Cabinet Office and Paymaster General (Jeremy Quin)

    I thank all those who attended the meeting of the all-party parliamentary group on haemophilia and contaminated blood chaired by the right hon. Lady last week. The Government acted on an interim compensation proposal for those infected in the autumn, paying out more than £450 million, and have accepted that there is a moral case for compensation. I am truly delighted that Sir Brian Langstaff has announced his intention to produce a second interim report, which, as I understand it, will be published before Easter. That will help the Government to meet our objective to be able to respond quickly when the final report is published in the autumn, although I do not wish to understate the complexity of the work involved in addressing the impact of the scandal.

    Dame Diana Johnson

    I thank the Paymaster General for attending the meeting with the all-party parliamentary group; we very much appreciated his input. What also came out of that meeting was a desire from those who have been infected and affected to have further information about what the Government are doing in preparation for the reports from Sir Brian—the final report particularly —later this year. I wonder whether the Paymaster General will set out how he feels he can best engage with those infected and affected in the coming months to show that progress is being made and set out a plan for that involvement with those infected and affected.

    Jeremy Quin

    The right hon. Lady makes a reasonable challenge. She has battled on this issue for many years. I am focused on that interim report from Sir Brian. We have already had the benefits of the Sir Robert Francis study, which I am sure has informed the work of Brian Langstaff and his team. When we see the interim report, it will be incumbent on us to give an immediate reaction—a reaction as soon as is practical—to it, and then to set out what we will be doing to build towards the final report, which, as I say, will be published in the autumn. I know that it has been a long wait for those infected and affected. It is not over yet, I am afraid. There is an awful lot of work to be done, but we are approaching the endgame as these reports come through.

  • Steve Barclay – 2023 Statement on the NHS Staff Pay Offer

    Steve Barclay – 2023 Statement on the NHS Staff Pay Offer

    The statement made by Steve Barclay, the Secretary of State for Health and Social Care, in the House of Commons on 16 March 2023.

    I am pleased to be able to inform the House that today 16 March 2023, I have made a formal offer on pay for 2022-23 and 2023-24 to the unions representing staff on the agenda for change contract. The NHS Staff Council has discussed this offer and the Royal College of Nursing, UNISON, GMB, the chartered society of physiotherapy and the British Dietetic Association will recommend the offer to their members in consultations that will be held over the coming weeks. Strike action will continue to be paused while they are consulted.

    Under the offer, over 1 million NHS staff on the agenda for change contract would receive two non-consolidated payments for 2022-23. This is on top of an at least £1,400 consolidated pay award that they have already received, which was in line with the recommendations of the independent pay review body.

    Under the terms of the offer, all staff would receive an award worth 2% of an individuals’ salary for 2022-23. In addition, staff would receive a one-off bonus which recognises the sustained pressure facing the NHS following the covid-19 pandemic and the extraordinary effort these members of staff have been making to hit backlog recovery targets and meet the Prime Minister’s promise to cut waiting lists. This NHS backlog bonus is an investment worth an additional 4% of the agenda for change pay bill, and would mean staff would receive an additional payment of between £1,250 and £1,600. With both of these payments, a nurse at the top of band 5, for example, would receive over £2,000 in total.

    For 2023-24, the Government have offered a 5% consolidated increase in pay. In addition, the lowest paid staff, such as porters and cleaners will see their pay matched to the top of band 2, resulting in a pay increase of 10.4%.

    For example, this would mean a newly qualified nurse would get over £1,300, increasing their base salary to £28,407. A nurse at the top of band 6 would receive a pay rise of over £2,000, increasing their base salary to £42,618.

    The Government firmly believe that this is a fair offer which rewards all agenda for change staff and commits to a substantial pay rise in 2023-24 at a time when people across the country are facing cost of living pressures and there are multiple demands on the public finances.

    Setting pay is an annual process and, as is always the case, decisions are considered in light of the fiscal and economic context and ensuring awards recognise the value of NHS staff whilst delivering value for the taxpayer. While it is right that we reward our hard-working NHS staff with a pay rise, this needs to be proportionate and balanced with the need to deliver NHS services and manage the country’s long term economic health and public sector finances, along with inflationary pressures.

    The Government asked the NHS Pay Review Body (NHSPRB) to report by the end of April 2023. We anticipate the progress made and the outcome of the union ballot to be taken into account. If the offer is accepted by unions, it will be implemented, but the Government would welcome observations from the NHSPRB on the pay deal in England.

    On top of the pay package, the Government are also committing to important measures including the development of a national, evidence-based policy frame- work which will build on existing safe staffing arrangements and amendments to terms and conditions to support existing NHS staff develop their careers through apprenticeships.

    In addition, having heard the concerns of nursing staff and their representatives about the specific challenges they face in terms of recruitment, retention and professional development, the Government have committed to address these issues and will therefore work with NHS employers and unions to improve opportunities for nursing career progression.

    The Government are also committed to improving support for newly qualified healthcare registrants. It will commission a review into the support received by those transitioning from training into practice. And the Government will consult on the permanent easement of pension abatement rules.

    This package, alongside the comprehensive NHS Long Term Workforce Plan that NHS England will publish later this year, will help to ensure that the NHS can recruit and retain the staff it needs to meet the growing and changing health and wellbeing needs of patients.

    Alongside making this formal offer, I have today also written to the Royal College of Nursing to outline that, in undertaking work to address the specific challenges faced by nursing staff—in terms of recruitment, retention and professional development—this work will involve: how to take account of the changing responsibilities of nursing staff; and the design and implementation issues, including scope and legal aspects, of a separate pay spine for nursing staff exclusively.

    The Government intend to complete this work such that resulting changes can be delivered within the 2024-25 pay year. In conducting this work, the Government will also consider whether any separate measures may apply to other occupational groups, taking into account the views of NHS Employers and unions.

  • Siobhain McDonagh – 2023 Speech on Brain Tumour Research Funding

    Siobhain McDonagh – 2023 Speech on Brain Tumour Research Funding

    The speech made by Siobhain McDonagh, the Labour MP for Mitcham and Morden, in the House of Commons on 9 March 2023.

    I crave the indulgence of the House for the speech that I am about to make.

    On 27 November 2021, my beautiful, unique, tough, resilient, successful sister collapsed in front of me and had a series of fits. Five hours later, in University College Hospital, two doctors named Henry told me that they suspected that she had a brain tumour, but as this was the NHS, MRI scans were not done at the weekend, so they could not confirm their diagnosis. On Wednesday, when I stepped on to her ward, she demanded—and everybody here who knows her will be able to hear her say it—that I ask the ward doctor to come and speak to her. She said, “It’s bad, Siobhain, because he can’t look at me.” And it was.

    For the woman who had run Labour’s only two consecutive successful general election campaigns, and achieved her ultimate ambition to see two full-term Labour Governments, the diagnosis was of a glioblastoma. All her toughness evaporated, and there was my little sister with a diagnosis that meant that she might have nine months left—a condition for which there was no cure, for which treatment had not made progress in over 30 years. Just before Christmas, she had the tumours removed by two amazing female surgeons, Róisín Finn and Anna Miserocchi at the National Hospital for Neurology and Neurosurgery, but this was post Brexit, so there were not enough nurses to keep all the operating theatres open, and Margaret’s operation was cancelled three times. I leave it to Members to guess my reaction to that, and how we got that operation in the end.

    The best piece of advice I have ever received in my life, and I have received many bits of good advice, was from the clinical nurse specialist. When we asked her where Margaret should go for post-operative treatment— St George’s, down the road from where we live; the Royal Marsden, around the corner; or to stay at University College—Róisín said, “We have Professor Paul Mulholland, and he is the best. He is the best in the UK, and he is the best in Europe.” I want to confirm to the House that he is the best. He is why Margaret is still alive.

    What you get when you have your tumour removed, if you live that long—many people do not—is six weeks’ radiotherapy, followed by six months’ chemotherapy with a drug called temozolomide. That drug was introduced in 2005, and since then there have been no variations to the gold-standard treatment in our NHS, so when you read articles such as the one in The Times on Monday, telling us all how successful cancer treatment in the UK is—how 85% of people with a breast cancer diagnosis, 55% of people with a bowel cancer diagnosis, and 98% of people with a prostate cancer diagnosis will get to live for 10 years—do not believe that it is the same for brain cancer. The Times may have chosen a brain as the photograph for the top of the article, but those statistics do not apply.

    Margaret had her treatment in early new year 2022; like so many, she could not go through with it—the treatment would have killed her. At that point, where do you go? There were no alternatives. It is not that there are a few trials: there are no trials, and there is nowhere to go. So, like so many of us who are lucky enough to have friends and family and access to money, we looked to the private sector and international travel. Margaret has been on a course of treatment with nivolumab, a Bristol Myers Squibb drug that was seen to be unsuccessful in the treatment of brain cancer, and Avastin, and has been going monthly to Düsseldorf, Germany for four days. That might seem an easy thing to do, but taking a seriously ill person on an aeroplane to a hotel, with no access to healthcare and no emergency services, would be foolhardy unless there was nothing else in this country. There was, and is, nothing.

    The help that we received from Dr Sahinbas and his wife, who runs their small clinic in Germany, with hyperthermic treatment was amazing. Their kindness was overwhelming, but there were times when I thought that I would not be able to get Margaret on the plane—that somebody would stop her because she was so unwell. There was one night when I stayed and stared at her, because I did not think she was going to make it through the night, and how would I explain that to anybody?

    By June 2022, Margaret had a scan, and they could not see the tumour. When I asked Dr Mulholland, “Is this normal for this treatment?”, he said, “Normal? I have never tried this on anybody before.” Nobody has ever had this drug so early in their treatment or at the quantity that Margaret has had it, or at the same time as hyperthermia therapy. Those who know about Margaret’s experience have come to me and sought support from Dr Mulholland because there is nothing else. The number that the NHS is currently forsaking and, for the lucky people who can get the funds to do it, abandoning to international travel is nothing short of a complete and utter national scandal. I wonder what my mum who came here in 1947 to train as part of the first generation of NHS nurses from Ireland would say about the NHS abandoning her daughter.

    But things can be different. Things can be better—maybe not today, maybe not tomorrow, maybe not next year, and maybe not within Margaret’s lifetime—and they can be different if we want them to be different. I ask the Minister to please not give the NHS or the cancer research charities any more money until they guarantee that at least 200 sufferers every year get access to a trial—that would be 1,000 patients over the lifetime of a Parliament—because with those trials we can begin to understand what works and what does not.

    The Minister should give no more money to the NHS trainers until they commit that every young doctor training to be a medical oncologist has to go through a course on brain tumour. At the moment, there is no compulsory training. The reason why there is nobody on those wards and nobody doing the work is that we are training nobody, and we are training nobody because nobody is required to do the course, and it was like that 15 years ago with melanoma. Some 15 years ago, the survival rates were so poor, but somebody came up with the idea that immunotherapy would be successful, and today we see successful survival rates equivalent to the best in any discipline. We also see young doctors wanting to take on the specialism, because it is exciting, there is hope, there is a future and there are alternatives.

    Who in their right mind today would become a medical oncologist in glioblastoma? There is no hope, no future, no trials—nothing. It would have to be someone with the belligerence and tenacity of my sister Margaret, and we have found that person in Paul Mulholland, but there needs to be more Pauls and more determination. We must have access to trials for 200 people and the training of medical oncologists, and we must require the pharmaceutical industry—because we will make no progress without it—to trial every drug that gets licensed to deal with tumours on those with brain tumours, so that there is access to existing drugs that can be repurposed.

    I am sorry about the time I have taken for this speech, but I want to tell the House that when I go to bed tonight I will keep my ear open for Margaret to hear her call my name, I will get up and I will go into her room, and it may be that she is asleep and I have imagined that she has called me. I accept that. That is my duty. It is what I have learned from my family, from my faith and from my politics. I accept that. That is my duty. It is what I have learned from my family, what I have learned from my faith, and what I have learned from my politics. I accept my responsibility. All that I want is for the NHS, cancer research charities, and pharmaceutical companies to stand up and accept their responsibility, and give some hope to the 3,200 people who will be diagnosed with a glioblastoma this year.

  • Holly Mumby-Croft – 2023 Speech on Brain Tumour Research Funding

    Holly Mumby-Croft – 2023 Speech on Brain Tumour Research Funding

    The speech made by Holly Mumby-Croft, the Conservative MP for Scunthorpe, in the House of Commons on 9 March 2023.

    First, let me offer my thanks to the Backbench Business Committee for allowing time for this really important debate. I have been working on this issue for some time, alongside other members of the all-party parliamentary group on brain tumours who have produced this report. I wish to put on the record my thanks to all those who have contributed to the report and, specifically, to Brain Tumour Research for its help. May I also give a special thanks to my hon. Friend the Member for St Ives (Derek Thomas)? I greatly admire the way that he has led this process and the work that he has done on brain tumours over my time in this House, and I know that he will continue with that work.

    Like many Members, I took a keen interest in this issue because of a constituent of mine, David Hopkins, who sadly was diagnosed with a brain tumour. He features in the all-party group’s report. In September 2020, David went to Scunthorpe General Hospital because he was unwell. That was right in the middle of the covid pandemic, so he was alone and had to go through the experience without his family with him. He was given the devastating news that he had a brain tumour—a glioblastoma. As we have heard today, the life expectancy of person who is diagnosed with a glioblastoma is between 12 and 18 months, so it is an utterly devastating diagnosis to receive for a family man and a very much-loved member of our community.

    David underwent bouts of chemo and radiotherapy, and he sought personalised immune therapy in Germany that cost £150,000. Unfortunately, a scan in April 2021 showed further tumour progressions and he had to have two craniotomies. By the following July, David had exhausted all treatment options that the NHS could provide for him and began NeoPeptide vaccine treatment, again in Germany. Sadly, this did not save David and he died in November 2021, leaving behind his children, Dylan, Lydia and Sydney, and his wife Nicki. I should say that Nicki is a force of nature. We are incredibly proud of her in Scunthorpe. She has gone on to raise funds for Brain Tumour Research and she ran the London Marathon. I commend Nicki for the work that she has done in this area.

    As I have already mentioned, people with glioblastoma may have only 12 to 18 months to live. The five-year survival rate for this cancer is still only 12%. By comparison, this rate has increased for cancers such as breast cancer and leukaemia to 85% and 54% respectively. This is not a coincidence; there has been extensive research and funding for treatment for these cancers, and we need to find treatment and cures for people such as David.

    The Government have pledged £40 million to fund brain tumour research. That is neither a small nor inconsequential amount of money. It shows that there is political will to solve the issue, but will alone is not enough. Only £15 million of that pot has been spent, and that underspend must be addressed. As the report explains, there are serious shortcomings in the current funding system when it comes to accessing the funding. We simply need to get the money into the hands of doctors, researchers and the people who know what to do with it—the people who are, as we have heard, working their socks off to find a cure for this terrible disease. A further step that the Government can take in the right direction is to recognise that this is a priority and to develop a plan, backed by the pledged money, that will support research from beginning to end.

    The report contains a number of key recommendations and proposals, and I will highlight a few of them. First, any treatment that is made available must be tested beforehand to assess its efficacy—we understand that—but there is a dearth of available trials, and the number of people participating in them is shockingly low. There are instances in which people with brain tumours are excluded from trials owing to concerns about the side effects from which they might suffer. Sometimes, people are just not aware that a trial is running until it is too late for them to participate.

    Surveys have shown that people want to participate in trials—I think that we all instinctively understand that that is the case—and we should make it as easy as possible for them to do when clinically appropriate. Guidance must be given on the inclusion of brain tumour patients in early-phase cancer trials. More mutation-focused studies should be commissioned, and the available trials should be listed in one single source that is available to patients at their bedside, as well as to clinicians.

    Secondly, another issue raised throughout the enquiry was one that researchers often encounter when taking their findings from labs into treatment centres. Conducting this translational research costs money, but researchers are impeded by a system that is difficult to navigate, meaning they cannot access money that the Government have pledged or put forward. It is ludicrous that scientists spend time and money and provide expertise on research that might go to waste because they cannot take it through the next steps. I would encourage the Government to look closely at the proposals to improve access to funding and for the MRC to introduce a fund to accelerate the pathway from discovery research to translational development.

    The report provides answers on why we seem to be stuck, as it were, on brain tumour research, and why we have not made as much progress as we might have on tackling the disease. People suffering from brain tumours do not have the luxury of time, and we owe it to the people who will be diagnosed in future to take action that gives them the best possible chance of survival, so that families such as the Hopkins family in Scunthorpe do not lose the people they love.

  • Hilary Benn – 2023 Speech on Brain Tumour Research Funding

    Hilary Benn – 2023 Speech on Brain Tumour Research Funding

    The speech made by Hilary Benn, the Labour MP for Leeds Central, in the House of Commons on 9 March 2023.

    The reason that I rise to participate in this debate is that just under two years ago a constituent wrote to me. He revealed that he had a brain tumour and asked me to go along to an APPG meeting to discuss ways in which we could try to find a cure. I went along and I must confess that little did I know then that I would end up taking part in the inquiry. We had, I think, six evidence sessions and we heard from a lot of people. The report, which the hon. Member for St Ives (Derek Thomas) referred to, distils into its recommendations what we heard from those who contributed and who were very patient in answering the many questions that we put to them.

    I pay tribute to the hon. Member, who chairs the APPG and who chaired the inquiry. He has done so brilliantly, cheerfully and in a way that has brought out the best from all of the people who appeared before us, who came along to let us draw on their expertise, to share their frustrations and to offer their ideas and suggestions. It has been an honour and a privilege to work with him and all the other hon. Members here who took part. I also thank the wonderful secretariat from Brain Tumour Research for supporting us in our work and for pulling the report together so skilfully.

    A cancer diagnosis is a terrible thing, although statistics tell us that one in two of us will receive such a diagnosis during our lifetime. I think most of us, if we are honest, would say that we wince when we hear the word “cancer”, because all too often it conjures the idea of a downward path to the end of our lives. Any of us who has been through that experience, either ourselves or, in my case, with those we love, knows exactly how that feels, but death is not always the outcome. Our lives are not preordained, and we have seen real advances in the treatment of certain types of cancer in recent years—breast cancer is a good example—and, overall, I am advised that cancer survival rates in the UK have doubled in the last 40 years.

    But when it comes to brain tumours, the blunt truth is that there has been almost no progress at all. The five-year survival rate for glioblastoma, the most aggressive form, is 6.8%, and the average length of survival is between 12 and 18 months.

    Siobhain McDonagh (Mitcham and Morden) (Lab)

    My right hon. Friend refers to the average length of survival as being 18 months. Actually, it is nine months. His figure suggests that everybody completes treatment. Nine months is the life expectancy of somebody diagnosed with glioblastoma.

    Hilary Benn

    I absolutely take my hon. Friend’s point, which reinforces, in all of us, our awareness of just how awful this diagnosis is, and it is the answer to the question that every person who receives such a diagnosis asks their doctor: “How long have I got?” Eight or nine months is no time at all.

    Dr Matt Williams, a clinical oncologist, is quoted in the report:

    “Every week I have to tell patients that there is nothing more we can offer. I have now been a consultant for 10 years and these conversations are the same now as when I started.”

    That is why a brain tumour is a devastating diagnosis. A patient quoted in the report says:

    “It’s devastating and living with a time bomb in your head.”

    That is a very good description of what it must feel like. In those circumstances, what do patients and loved ones want? What we would all want is to make sure that we are doing everything we possibly can to try to change that.

    Mr Carmichael

    I speak about this publicly from time to time, and I am always struck by the number of people who say to me, “Thank you for doing that, because this took my father”—or their brother, their neighbour, their friend or whoever—“and I had no idea that this had been their life experience.” When I was growing up, 40 or 50 years ago, a cancer diagnosis really was not talked about—it was almost taboo—and I think we are in the same place with brain cancers. If we are to make the progress we need, we all have to start talking about this much more. The experience has to be shared.

    Hilary Benn

    I agree completely with what the right hon. Gentleman has said. To borrow a phrase, it’s good to talk about brain cancer. That is why we are here in this Chamber today. We are here to raise awareness, because loved ones dying remains, among some people, a great taboo, about which we are fearful of saying anything. When my late first wife died of cancer at the age of 26, I was struck by the fact that my colleagues at work, though wonderful people, found it almost impossible to mention what had happened when I went back to work. I understand why, because before it happened to me I would have been like them. I would have thought I would say the wrong thing or cause someone to break down in tears. When it happens to you, you come to realise that there is nothing special to say; you just have to go up to the person and say, “How are you?” and listen. Yes, they will cry and you will cry, but that is so much better than people hiding it inside, with the suffering that it brings.

    That is what this report is trying to do—it is trying to make sure that we are doing everything we can. There are good reasons why brain cancer is proving so difficult to treat. I learnt about that, as did the other members of the inquiry panel. The brain is a complex organ. I had never heard of the blood-brain barrier before. I am not sure I still understand it, but I heard a lot about it in the evidence we received. We learnt about treatments that had been tried and had failed, and about the desperation of those with brain tumours to get on to trials that might just offer some hope, not of a cure, but of a few more months. For someone who has received a diagnosis of a brain tumour, every second—let alone every minute, week or month—is extremely precious. We heard of the despair of people who are unable to get this for themselves or their loved ones, and it is so particularly poignant when it is children who have a brain tumour.

    So we are calling for a renewed and determined focus on doing every single thing we can to change the situation, not because we are naive about the difficulties, which are many, but because it is the very least we can do for the people who find themselves in this position. So, of course, we have called for greater investment. I thought the hon. Member for St Ives explained well why the funds that have been made available and set aside for brain tumour research—I welcome them enormously—have not all been allocated and spent. It is not for want of willingness; it relates to the point he made about the lack of suitable research proposals coming forward and the frustration, which came across so clearly in that one evidence session in particular, of those who have put their research proposals to the research bodies, have been knocked back and feel, “They did not really understand what we are trying to do.” That is because those who sit on those panels may not have expertise in the field of brain tumour research, which is why we strongly encourage the research councils to look more widely at, and more favourably upon, proposals for brain tumour research.

    We have a funding system that has been built in silos. It needs to be better joined up, from basic science through to clinical trials. At this point, I wish to pay tribute, as we all would, to the clinicians, scientists, doctors and others who work their socks off to try to crack this problem and find a treatment. That is why we have made some very specific recommendations. The example of biobanking and tissue samples seemed so simple when people talked about it. When we are dealing with any disease, but particularly this one, does it not make sense to pool all of the information that we have available about what we have learnt, what we still do not know, what may work and what may not? Clearly, that is not happening, even though it is a simple thing to do so that anyone undertaking research can draw upon all the available material as they apply their mind, scientific skill and determination to finding a cure.

    We are also calling for patients with brain tumours to have equity of access to trials of new anti-cancer drugs that currently may be available only to patients with other types of malignant cancers. There can be a fear that if other people are brought into the trial, it will somehow skew the result. However, if a person is dying, that is not their concern. Their concern is: “Might this possibly work to save my life or the life of the person I love?”

    I hope that this report and the views of all those people who so generously gave their time—we thank all of them—will have an impact as, collectively, we roll up our sleeves, redouble our efforts, and express an even greater determination to find treatments and cures for this cruel disease that shortens the lives of so many people whom we have come to know or know already and love. What keeps us going in difficult times is hope, and I think these recommendations offer exactly that. As one patient said, “If you have hope, you have life.”

  • Derek Thomas – 2023 Speech on Brain Tumour Research Funding

    Derek Thomas – 2023 Speech on Brain Tumour Research Funding

    The speech made by Derek Thomas, the Conservative MP for St Ives, in the House of Commons on 9 March 2023.

    I beg to move,

    That this House has considered brain tumour research funding.

    I am hopeful that we will have nodding heads on both sides of the House for this debate this afternoon. I thank you for the opportunity to speak, Mr Deputy Speaker, and thank the Backbench Business Committee for making time for this debate.

    I pay particular tribute to those families around the UK who are living with a brain tumour diagnosis. When I meet some of these families, I see an enduring hope, when so often their outlook seems hopeless. It is for that reason that the purpose of this debate is to demand a greater emphasis from Government and to accelerate the effort to find more effective methods to treat patients with brain tumours and ensure that they have the best care and rehabilitation possible.

    Many hon. Members will remember that back in 2015, the Realf family presented a petition with 120,129 signatories calling for an increase in national funding for the research into brain tumours. The Petitions Committee picked it up and the following Westminster Hall debate led to the Government Minister at the time establishing a task and finish group to look at the issue. That group published its report in 2018 and the Government subsequently announced a £20 million fund for research into brain tumours, boosted by a pledge of a further £25 million by Cancer Research UK.

    Mr Alistair Carmichael (Orkney and Shetland) (LD)

    As the hon. Gentleman knows, I have been on this journey with him since that quite remarkable Westminster Hall debate in 2016. We said then that we needed the money; we got the money, but now we find that there are structural problems still standing in the way of the progress we need. To me, that says that there is probably nobody in charge of the strategy within the Department. Does the hon. Gentleman agree that if we can achieve anything in this debate, it will be to hear a commitment from the Treasury Bench that somebody will take charge of this strategy and make it happen?

    Derek Thomas

    Of course, I agree with the right hon. Gentleman. Actually, I want the Government to go further and make brain tumour research the priority of all cancer research, because we have not seen the progress that we should have in that time.

    Margaret Ferrier (Rutherglen and Hamilton West) (Ind)

    A constituent got in touch with me yesterday to tell the devastating story of her young niece, who struggled to obtain a diagnosis despite several GP trips and horrendous symptoms that left her unable to eat properly or attend school. Does the hon. Member agree that ringfenced funding, specifically for research into childhood brain tumours, must be agreed urgently?

    Derek Thomas

    I will come on to that point later. I am grateful for the contributions that we have already heard.

    I pay tribute to the late Dame Tessa Jowell, who sadly received her own diagnosis of a brain tumour soon after that debate, when Government funding was being announced. At that time, about five years ago, she said in the other place:

    “For what would every cancer patient want? First, to know that the best, the latest science was being used…wherever in the world it was developed, whoever began it.”—[Official Report, House of Lords, 25 January 2018; Vol. 788, c. 1170.]

    Sadly, she passed away in May 2018.

    Soon after, an additional £20 million of Government money was made available and the Tessa Jowell Brain Cancer Mission was established. I pay tribute to Dame Tessa Jowell’s daughter and the mission for the way that they have transformed the pathway and the care that brain tumour patients get, and for the work that they continue to do. I appreciate the way that they have engaged with me and others on the all-party parliamentary group on brain tumours in their work.

    The provision of £65 million heralded a significant shift in focus towards brain tumours. Given the high-profile commitment to brain cancer research, we should not be here calling for a commitment and a focus on brain tumour research five years later. Sadly, however, despite the £40 million of Government funds that were committed to research, there has been a lack of grant deployment to researchers.

    It is important to note that Cancer Research UK, since announcing its commitment to spend £25 million on strategic initiatives in brain tumour research in 2018, has committed almost £28 million to that cause. That is not the case for Government funding. To date, the figures of the National Institute for Health and Care Research—the body responsible for distributing that research funding—state that of the £40 million, between £10 million and £15 million has been deployed, and that depends on how we interpret brain tumour research.

    The all-party parliamentary group on brain tumours, which I am privileged to chair—perhaps I should have declared my interest at the start—decided to conduct the “Pathway to a Cure—breaking down the barriers” inquiry, which aimed to identify barriers preventing that important funding flowing to its intended recipients. We felt the need to launch that inquiry only because a series of meetings, including with the National Institute for Health and Care Research, the Medical Research Council, the Department of Health and Social Care and a Government Minister, failed to reassure us that dedicated research funding would or could be used to ramp up the research needed if we want to discover the breakthrough that every brain tumour sufferer and their family longs for.

    Those of us who serve on the all-party group were able to understand the severity of the issue and the lived experience for patients, families, clinicians and researchers only because of the sterling work of the charity Brain Tumour Research. It provides the secretariat for the all-party group and brings together thousands of people across the UK to share their experience, knowledge and understanding, and to make up what I affectionately know as the brain tumour family.

    In February last year, we launched our inquiry and took evidence from clinicians, researchers and patients. We released our report last Tuesday. Today, part of the way into Brain Tumour Awareness Month, we will set out what we have unearthed during the inquiry and press the Government to review and reform their method of deploying research funds to those who can make best use of them.

    From our work, we know that researchers find it challenging to access Government funding, because the system is built in silos. We know that cell line isolation and biobanking are happening, but at only a minority of sites across the research community; that the pool of talented researchers is finite; and that NIHR processes act as a disincentive to researchers who can apply their expertise and intellect more easily elsewhere in the medical research field.

    We also found that there are a limited number of clinical trials available for brain tumour patients, and that the national trials database is not reliable. We found that pharmaceutical companies are choosing not to pursue the development of brain cancer drugs in the UK, and that funding is not ringfenced—specifically for research into childhood brain tumours, as has been mentioned, where survival rates for the most aggressive tumours have remained unchanged for decades.

    Kirsten Oswald (East Renfrewshire) (SNP)

    The hon. Member is touching on a point that I am sure will have been heard by every MP in this place. Constituents who, sadly, have children who have been or are affected by brain tumours know only too well that things have not changed for decades. That is why what he has come here today to talk about is so important. We need to shift the dial. It is not good enough, it is terribly unfair and the consequences of us not shifting it are obviously profound.

    Derek Thomas

    Sadly, I have met far too many parents who have lost loved ones. It is heartbreaking to speak to them, and to see how a juggernaut has charged through and destroyed much of their lives. They give me so much hope that we can do this work because of the commitment they have to this subject.

    Before I address the specific recommendations of the report, may I thank colleagues—many of them are here today—who have given up the last year to interrogate witnesses and to take evidence? I want particularly to mention my hon. Friend the Member for Scunthorpe (Holly Mumby-Croft), the right hon. Member for Leeds Central (Hilary Benn), my hon. Friend the Member for Buckingham (Greg Smith), the hon. Member for Ceredigion (Ben Lake) and Lord Polak CBE from the other place, but also Sue Farrington Smith MBE of Brain Tumour Research, Dr David Jenkinson of the Brain Tumour Charity, Professor Garth Cruickshank, Dr Antony Michalski and Professor Tony Marson, who took part in the inquiry, and most importantly, Peter Realf, whose son was lost and who triggered the petition back in 2015.

    To turn to the findings, the Government must recognise brain tumour research as a critical priority. Five years ago, a remarkable effort was made by Government to respond to the shocking statistics that surround brain tumours. Brain cancer remains the biggest cancer killer of children and adults under 40. In order for survival rates to increase, the Government must go further and treat brain tumours as a key priority. This has been achieved in other countries through legislation, and I urge the Minister to see what can be achieved here. A brain tumour champion, which has already been hinted at, is needed to co-ordinate the funding and implementation of a strategy between the Department of Health and Social Care and the Department for Science, Innovation and Technology.

    In order for brain tumour research to lead to tangible changes in survival rates for patients, it needs to receive funds across the research pathway, including discovery, translation and clinical research. I recognise the recent advances and improvements in molecular testing and prognostic information, but there is a requirement for further discovery research. That will improve the understanding of disease biology, and how best to frame and support pre-clinical trial research. For instance, a particular issue for tackling brain tumours is the complexity of drug absorption through the blood-brain barrier.

    It is crucial that the Government enable the building of critical mass in these elements of the research pipeline. With no ringfenced funding to support poorly funded disease areas such as brain tumours, investment in the disease is not always prioritised. Focused calls for multidisciplinary research into brain tumours through organisations such as the MRC would support this. Additionally, making the blood-brain barrier a strategic priority and encouraging investment in cutting-edge research could yield game-changing results in the treatment of brain tumours and other neurological diseases.

    On translational research, on average, it takes 15 years for an idea to move from the pre-clinical stage to helping a patient. Patients have not got that long to wait. Researchers have said they found it challenging to access Government funding for translational research, relying on charities to fund risky elements of the pipeline. More must be done to support this valley of death element of the research pipeline. That seeks to move basic science discoveries more quickly and efficiently into practice, and that shift would increase interest among the research community, ensuring a greater concentration of research expertise in this area.

    The inquiry also found that there is a perception that review panels have a lack of understanding about the unique nature of brain tumour research, due to a deficit of specialists on panels. That was reported to account to some degree for low application success rates. During oral evidence sessions, it was also highlighted that a lack of feedback disincentivised unsuccessful applicants from reapplying, bearing in mind that they would potentially have spent a year on such work before their original application was ready for submission.

    Positive and proactive engagement with the research community should be nurtured through a continued programme of workshops and funding toolkits for researchers, supporting navigation of the funding system and increasing success rates. Currently, due to many of those issues, and a lack of funding and support, early stage researchers, especially post-doctoral researchers, are moving away from the field of brain tumour research. They are attracted by more readily available and secure funding in other disease areas. A solution for that would be the MRC and the NIHR ringfencing opportunities, such as specific brain tumour awards, across the research pipeline.

    Funding could also be prioritised for a fellowship programme, supporting early stage researchers to develop their skills in the field. There is an example within the Cancer Mission, where two teaching fellowships, match-funded by the NIHR, are taking place. That number needs to increase. Learning about brain tumours early in careers results in researchers going on to choose the discipline.

    Currently, only 5% of brain tumour patients are entering the limited number of trials available. Clinicians stated that many trials that patients with brain tumours are eligible to enter are not accessible to patients, who often have physical disabilities, as participants are expected to travel long distances across the UK. Poor health and the cost implications were key barriers to patients entering studies that were available to them.

    A survey carried out by Brain Tumour Research highlighted that 72% of patients who responded would consider participating in research or a clinical trial if offered the opportunity. Only 21% believed that healthcare professionals gave sufficient information about opportunities to participate in clinical research, including trials.

    That approach does not take account of the benefits that new and repurposed therapeutics could provide for brain tumour patients. If brain tumour patients are excluded at an early stage, possible benefits for such patients are not identified and carried forward in later trials. Access to trials should be assessed not by the location of the tumour, but by other individual criteria such as genomic profile and medical history.

    It was also demonstrated that clinicians are risk-averse to children accessing early phase trials, despite parents’ wishes. As a result of those limitations, patients are encouraged to travel overseas in pursuit of treatment not available in the UK. Some small improvements to both systems would allow many more clinicians to successfully support patients to access trials across the country.

    We have touched on this briefly, but paediatric brain cancer is viewed by researchers as different from adult brain tumours because brain tumours in children are linked to physical development, rather than ageing. Current treatments for children have significant long-term side effects and much more research is needed into kinder treatments and novel drug delivery for children. Additionally, more must be done to tackle brain injury issues and the consequences of brain tumour treatments.

    In this place, we often talk about the need to support people to meet their potential and to live life to the full to address issues that curtail life chances. That is no less important for children and young people who have experienced a brain tumour or brain cancer. Using the method adopted by the NHS to measure survival rates, children’s survival following a tumour is positive. However, they are often left with a brain acquired injury caused by the surgery and treatment of the brain tumour itself.

    Once the child is discharged from the hospital, there is no guaranteed pathway of rehabilitation or access to suitable education, therapies, services or physio. That causes tremendous additional strain on the family as they seek to access and fight for the appropriate step-down care. In many cases, the lack of those therapies means that the recovery and life chances of the child or young person are nowhere near as good as they could or should be.

    In this place, we want life to be a success. I pay particular tribute to Success Charity and Dr Helen Spoudeas, who has worked tirelessly to ensure that these brain acquired injuries are taken more seriously and that a concerted effort is made to ensure the best possible recovery. Success Charity exists to advocate for survivors and provide them with the care and support that they need and deserve. It has its annual conference at the Royal College of Physicians this Saturday, which will give families an opportunity to share experiences and make friends with other survivors, siblings and parents, and to listen to inspirational speakers.

    Having given some thought to this issue, and having discussed it with others, I think that an appropriate approach would be to introduce a commitment that every child and their family would be entitled to a carefully crafted package that ensures that all the needs of a growing and developing child are met, including access to education services, and that the best person to ensure the implementation of this package would be an occupational therapist.

    This Government want the UK to be considered a science and technology superpower. The UK must start setting the pace for recovery rather than fall further behind. Business as usual threatens the UK’s ability to lead clinical trials for brain tumours. Brain tumour research must be seen as a critical priority, with Government developing a strategic plan for adequately resourcing and funding discovery and translational and clinical research. Robust tissue collection and storage facilities must be put in place across the country. As a Government Minister said in this place only last week, every willing patient must automatically be part of a clinical trial, and that includes collecting and storing tissue for research. There must be equity of access to clinical trials and a robust and up-to-date clinical trial database. The regulatory process must be simplified, with the introduction of tax relief and incentives for investors to encourage investment for the longer-term periods necessary to develop and deliver new brain tumour drugs.

    There is so much more that could be said, and I am sure that much more will be covered this afternoon. I hope that the Minister will take the report and our recommendations seriously, and that he will have an opportunity to come back to us at a later date—when he may have more time than that afforded to him at the close of this debate—to set out how the Government intend to respond to our recommendations. Will he also agree to meet me and members of the all-party group to discuss the recommendations of our Brain Tumour Research report? Thank you, Mr Deputy Speaker.

  • Steve Barclay – 2023 Statement on the Spring Booster Programme and Evergreen Offer

    Steve Barclay – 2023 Statement on the Spring Booster Programme and Evergreen Offer

    The statement made by Steve Barclay, the Secretary of State for Health and Social Care, on 8 March 2023.

    Our Covid vaccination programme has saved tens of thousands of lives across the country and helped to ease pressure on the NHS during a challenging winter.

    It is important that we continue to ensure the most vulnerable are protected through a targeted seasonal vaccination offer for those most at risk, which is why I have accepted advice from the independent Joint Committee on Vaccination and Immunisation on this year’s spring booster programme. This will top up the protection of those considered at highest clinical risk, spring booster vaccines will be offered to adults aged 75 years and over; residents in a care home for older adults and immunosuppressed individuals aged 5 years and over.

    The spring booster programme is due to end on 30 June and as we live with the virus without past restrictions on our freedoms, I am also announcing that the offer of a first or second dose of Covid vaccine will end at this time.

    Covid continues to infect thousands of people every week, so I strongly encourage anyone who has not yet taken up the offer of a first or second dose of vaccine to join the 42 million who have already come forward for both doses.