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Category: Health

  • Anna Firth – 2023 Speech on World Down Syndrome Day

    Anna Firth – 2023 Speech on World Down Syndrome Day

    The speech made by Anna Firth, the Conservative MP for Southend West, in the House of Commons on 23 March 2023.

    It is a huge pleasure to speak in this afternoon’s debate. I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing it, for his groundbreaking work in this area and for his Bill, which was passed into law last year.

    As we have heard, the theme of this year’s World Down Syndrome Day is “With Us Not For Us”—apt recognition of the fact that people with disabilities have the right to be treated fairly and to have the same opportunities as everybody else, working with others to improve their lives. Nowhere is that exemplified more brilliantly than through the work of the world-famous, world record breaking Music Man project—a Southend-based education and performance service for people with physical and cognitive learning difficulties such as Down syndrome.

    The Music Man project reverses perceptions around disability, including Down syndrome, on a scale rarely seen before. The project has been so successful that there are now regional centres across the United Kingdom and even around the world. None of that would have been possible without the incredible leadership and drive of the Government’s disability and access ambassador for arts and culture, Southend’s very own hero David Stanley BEM. He really does deserve a knighthood. David’s mission in life has been to support people with learning difficulties to achieve what would once have been unthinkable. He is the living embodiment of, “With Us Not For Us”.

    David Stanley’s students recently performed alongside the Massed Bands of His Majesty’s Royal Marines in the Mountbatten festival of music at the Royal Albert Hall. A total of 15,000 people gave them a standing ovation over three performances. One such supporter was none other than His Majesty the King, who rose to his feet to applaud these incredible musicians. It was a remarkable moment and testament to the power of music to shine a light on a once forgotten society.

    Quite rightly, in February this year, David Stanley received a special recognition award from the National Lottery for his work with the Music Man project. Everyone in Southend is incredibly proud of his work and that of these incredible musicians with Down syndrome who are achieving so much. Some will know that one of their astonishing achievements was to come out with a Christmas single, “Music is Magic”, which made the top 10—it may have been at No. 10, but never mind. It was an amazing record, featured on BBC1’s “Breakfast”, Sky News, ITV’s “Good Morning Britain” and across national radio and press. It was officially launched with a performance at the Painted Hall in Greenwich, and the Prime Minister was presented with his own copy by the Leader of the House. I took my team to Waterloo station where the musicians were performing. It was an incredible and joyous occasion to help them and to sing with them there.

    Not content with just storming the charts here in the UK, the Music Man ambassadors—bandassadors—also stormed America on their recent concert tour to San Diego, where they performed onboard the iconic aircraft carrier the USS Midway. Their groundbreaking collaboration with the Royal Marines connects elite military musicians with people with learning disabilities, through the universal language of music. Last year, they also received four “yes” votes from the celebrity judges of “Britain’s Got Talent”. Simon Cowell described them as

    “like drinking a glass of happiness”.

    Watch this space.

    I could go on about the project’s incredible musical success. As I have said, it is the perfect example of “With Us Not For Us”. The students are treated as fellow musicians and enjoy the same incredible opportunities to express themselves and share their talents. As a result, musicians with Down syndrome are now role models for their community and global ambassadors for the UK’s accessible arts and culture. David Stanley himself says,

    “Sometimes it feels as if I’m clinging on for the ride while they go on and make history.”

    In preparing for this debate, I contacted the ex- headmistress of one of our special schools in Southend, who is now the CEO of the SEN Trust. There is more we can do to support people living with Down syndrome. Jackie Mullan, a brilliant champion of education for people with disabilities, has shared with me her concerns about the lack of post-19 college options for people with Down syndrome in Southend. There should be more options for people leaving college, whether that be entering the world of employment or enjoying better daycare opportunities. Sadly, at the moment, those are few and far between in Southend and are difficult to access due to the pressures on social worker workloads. She has even heard reports of families who have waited over six weeks just for a phone call to be returned about the options available. There should be a review of the guidance issued, looking at what is and is not available. That must be improved. I would be grateful if the Minister could confirm that the Government are looking into that.

    There is so much to celebrate about the Down syndrome community and the champions we have in Southend, including Jackie Mullan and David Stanley. They are heroes, but only because of the incredible passion, energy, excitement and enthusiasm of the students they look after.

  • Lee Anderson – 2023 Speech on World Down Syndrome Day

    Lee Anderson – 2023 Speech on World Down Syndrome Day

    The speech made by Lee Anderson, the Conservative MP for Ashfield, in the House of Commons on 23 March 2023.

    I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing this important debate on a subject close to my heart. It is important in such debates to talk about real people. There is a real person in Ashfield called Jossie May. She is seven years old and has Down syndrome. Jossie’s family want the world to see the real Jossie. Is Jossie different? Yes, she is. She is beautiful, funny, clever, friendly, happy, and all the things that I want to be but unfortunately am not. She is a role model to us all, so I guess she is different. Jossie’s family know that she will face certain barriers when she gets older, but with the right support in place, Jossie can achieve many great things and make a fantastic contribution to our society. Why should she not be allowed to do that? She should be.

    Gone are the days when we would hide away children with Down syndrome, and thank goodness for that. Why should we hide them away? They have as much right to enjoy life as we do, but it is up to us as a civilised society to ensure that we remove as many obstacles as we can. With the right education and support, young Jossie could go on to lead a happy, contented and independent life where she can work and look after herself. Is that not what we all want?

    Jossie’s family are aware that we have made great strides in education over the past 30 years, but we still have a long way to go with Down syndrome. In the right settings and with the right support, whether in mainstream or special schools, surely we can do a little more to help members of our Down syndrome community. We want a world where we do not have to fight so hard for people such as Jossie. There also needs to be acknowledgement that, like any other human being, those with Down syndrome have different levels of ability. We are all different, and have different abilities. Some will be capable of living independently with some support; some will never be able to do that. We need to look at each person as an individual and ensure that they are supported by the correct decision making.

    Great improvements have been made in access to education, but when a person with Down syndrome leaves full-time education, their employment opportunities are few and far between. We have a great project in Ashfield called the Rumbles cafe, where young people with learning disabilities are trained to work in a café. It is a life-changing experience for many young people, and provides a valuable service to our community, but the café faces an uncertain future, as the local council is bickering over the terms of the lease. It is truly a shocking situation.

    Attitudes need to change. It should be not all about money but about outcomes. There also needs to be much more support post education. So many parents end up with a young adult who has little opportunity to integrate with their local community on a day-to-day basis. It is truly shocking. Every person deserves to be immersed in a community where they can get involved.

    We need more research into health issues. There is a huge pocket of science within the Down syndrome community, such as on childhood leukaemia and Alzheimer’s, to name just two issues. Imagine what answers could be sitting there undiscovered in the Down syndrome community. It is an interesting fact that the cure rate for acute myeloid leukaemia in children with Down syndrome is higher than that of the general population. We should be looking into that more.

    Lastly—this should be the simplest of all—I would like better signposting in maternity care. The Positive About Down Syndrome support service has made great strides to improve that, but there is still more to be done. I know Jossie. According to her family, she is every kind of wonderful and deserves a wealth of opportunities. Let us make a world where that can happen.

    I was at the event in this place just a few days ago. I saw room full of wonderful young people, full of talent and ambition, with loving and caring families. If we cannot make the world better for those young people, we should not be here in this place. I am confident that the Minister will make sure that we do that.

  • Jo Gideon – 2023 Speech on World Down Syndrome Day

    Jo Gideon – 2023 Speech on World Down Syndrome Day

    The speech made by Jo Gideon, the Conservative MP for Stoke-on-Trent Central, in the House of Commons on 23 March 2023.

    First, I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing the debate and for all the work he did to ensure the Down Syndrome Act 2022 became law.

    During our lifetime, there has been a significant change in attitude towards Down syndrome. Undoubtedly, there is still more that can be done to improve the quality of life and opportunities of people with Down syndrome, but as we mark the 18th anniversary of the first World Down Syndrome Day, we should not forget the progress that has been made in understanding the condition and supporting those with Down syndrome to be treated fairly so they are able to live full and productive lives.

    I speak with personal experience. My father had an elder brother, Donald, who had Down syndrome. I was only told of his existence when I was 27 years old and pregnant with my second child. Donald died in 1946, aged about 25. He spent all his life in an institution, which was standard practice at the time. My father did not talk about his brother. He found it too painful. My mother explained to me that when my father was a small child, my grandmother had taken him with her every month to visit his brother in the institution and the experience had traumatised him.

    When I spoke during the Down Syndrome Bill debate last year, I referenced the BBC series “Call the Midwife”, which documented attitudes towards Down syndrome and how they started changing in the 1950s and 1960s as people with Down syndrome were able to take an active part in their communities. Not only have attitudes changed, but life expectancy has increased dramatically in recent decades from 25 years in the 1900s to 60 years today. Medical science has advanced and people can live extremely healthy and long lives, and make a great contribution to our society.

    I am incredibly grateful for this opportunity to celebrate the achievements and contributions of people with Down syndrome to their local communities and to our society as a whole.

    Jim Shannon (Strangford) (DUP)

    I congratulate the right hon. Member for North Somerset (Dr Fox) on securing the debate. We are all encouraged by the situation. What comes to my mind is a young gentleman called James Martin, the 31-year-old who starred in the roaring success, “An Irish Goodbye”. He has gone from working in Starbucks to living his dream by winning a globally recognised award. Most importantly, he has never let his disability get in the way of goals and achievement. Does the hon. Lady agree that James is a true role model to all individuals out there who feel that society restrains them due to their disability, and reminds them that the world is their oyster—or in this case, their Oscar?

    Jo Gideon

    I thank the hon. Gentleman for his intervention. He is absolutely correct.

    In Stoke, the Stoke and Staffordshire Downs Syndrome Social Group was set up in 2016 by a family in my constituency after their son was born with Down syndrome and the couple walked away from hospital with just a factsheet about the disorder. Today, the group meets regularly in Birches Head and is making a difference to the lives of more than 50 families by organising regular trips and activities, as well as supporting families emotionally and connecting them with wider support groups.

    I would also like to highlight the great WorkFit programme for its role in making workplaces more inclusive. WorkFit is an employment programme that matches places and supports individuals with Down syndrome into work, with more than 1,000 individuals successfully accessing the service to date. In my constituency of Stoke-on-Trent Central, I was delighted to hear that the programme supported Grace into her role at Dunelm distribution centre, where she works dealing with returns from customers. She works two days a week and really enjoys being part of a great team who are very supportive. She uses her computer skills to process returns from customers and is very proud of her job.

    Last week’s Budget outlined ways in which we would like to see a greater proportion of working-age people in employment, with a specific emphasis on supporting disabled people into work. One thing I would like to see is an improvement in ensuring that public transport services are available for travelling to and from work, so that a lack of access is not a barrier to that aim. Indeed, while it is wonderful to hear stories like Grace’s, according to the Down’s Syndrome Association, people with Down syndrome often face barriers and prejudice, lack of opportunities, low expectations, stereotyping and other negative attitudes. A study by Mencap found that 62% of adults with learning disabilities in the UK want to work, but only 6% have a paid job.

    Everyone should have the right to work. People who have Down syndrome want to work for the same reasons as everyone else: to earn their own money, learn new skills, meet new people, feel valued, contribute to society, and have the chance to be more independent. Work is important for so many reasons and is a key part of our personal ambitions. For employers and their workforce, being equipped with the knowledge and understanding of how to better support a colleague with the condition is at the heart of the matter. In fact, it is key to achieving an inclusive work environment.

    The same goes for education. The majority of children with disabilities in developing countries are currently out of school, while many of those enrolled are not in learning. To ensure that all children have access to quality education, education policies and practices must be inclusive of all learners, encourage the full participation of all, and promote diversity as a resource rather than as an obstacle. I was listening to an interview with a teacher recently, who said that she had seen such a difference in her class after moving from retrospectively altering her lesson plans for children in the class with Down syndrome, to thinking about how she can make a plan that includes the needs of all her pupils from the beginning. When we think about successful inclusion, it is about how are we supporting teachers to include and value everyone from the start, as opposed to adapting and modifying in retrospect.

    The theme of this year’s World Down Syndrome Day is “With Us Not For Us”. I think that reflects my point well: a move from the outdated charity model of disability to working with others to treat them fairly so that they have the same opportunities as everyone else.

    Karen Bradley (Staffordshire Moorlands) (Con)

    Mr Deputy Speaker, I hope you will forgive me, but my constituent Ed Daly is in the Public Gallery with his mum, Jane. They spoke at the event on Tuesday in Parliament and they are fantastic advocates for this cause. Everything my hon. Friend says absolutely sums up what they have been saying to me. Will she, as I do, pay tribute to them?

    Jo Gideon

    I absolutely do pay tribute to them. I cannot see them in the Public Gallery, but it is wonderful that they are here to listen to the debate and to hear all the support there is for them in the House.

    Support in decision making is really good. We all need help from people who know us and want the best for us. But people should have the right to make the final decision, the right to dignity and individuality, and the right to be in control of their lives.

  • 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.