Tag: Speeches

  • James Frith – 2019 Speech on Music Education in England

    Below is the text of the speech made by James Frith, the Labour MP for Bury North, in Westminster Hall on 17 July 2019.

    I beg to move,

    That this House has considered music education in England.

    It is a great pleasure to speak under your chairmanship, Sir George, and to open this debate—the first parliamentary debate I have led—on music education. I thank all those who contacted me about the debate, especially the schools in Bury North that told me about their experiences, as well as the all-party parliamentary group for music education, the House of Commons Library and the excellent sector organisations, including the British Phonographic Industry, PRS for Music, and of course UK Music. Those organisations demonstrate impressive leadership and make a powerful case for music education in their published works.

    As friends will testify, when getting to know someone I soon share with them my passion for music. Shortly after that, I will probably mention that I played at Glastonbury in 2003, on what is now known as the John Peel stage, on a Saturday at 11 o’clock—11 am. It is good to be here for this important debate in another early morning slot. Two simple ideas will guide my argument. First, music education must not fall victim to the tired old argument of traditional versus progressive education; it applies to both. Secondly, this debate must look to the future in the light of calls for music education based on current assessments.

    Kevin Brennan (Cardiff West) (Lab)

    I congratulate my hon. Friend on securing this debate and on being one of only two MPs to have played at Glastonbury. I am not the other. Does he agree that the Government could approach this issue without having to change all their assessments simply by stipulating that no school under inspection could be rated “outstanding” unless it had an outstanding creative offer, including in music education?

    James Frith

    My hon. Friend makes a powerful suggestion. I will come to Ofsted’s role later in my speech, as I believe it can be a friend in this mission.

    Music output from the UK remains world leading. Artists such as Stormzy are breaking new boundaries and contributing to the success of our £4.5 billion industry. In seven of the last 11 years, the biggest selling album in the world was by a UK act. The heritage of British music is celebrated worldwide, but we must focus on the future. We cannot afford to be complacent at a time of great economic and cultural change. Britain’s role in the world is under new assessment. The rise in automation means that we must emphasise what makes us human, not compete on learned behaviour with the machines we make. Our education system must emphasise what distinguishes us as human, and music education is ​a huge part of that effort. Creativity, expression and performance are instincts as important as what we feel from a beat of the drum.

    Last year, UK Music, the umbrella body for the commercial music industry, released its “Securing Our Talent Pipeline” report, which sets out in great detail the challenges beneath the success stories facing the industry. The report details evidence that 50% of children at independent schools receive sustained music tuition, while the figure for state schools is only 15%.

    Seventeen per cent. of music creators were educated at independent schools, compared with 7% across the whole population, and 46% of them received financial help from family or friends to develop their career. Growing inequality of opportunity underlines the problem. In that report, the CEO of UK Music, Michael Dugher—formerly of this parish—argues that a career in music must not become the preserve of those who can rely on the bank of mum and dad, and he is right.

    Alex Chalk (Cheltenham) (Con)

    I congratulate the hon. Gentleman on his excellent and passionate speech. Will he pay tribute to organisations such as the Cheltenham Festival for Performing Arts, which provide exactly those opportunities to people from all walks of life—private and state schools—and allow them to perform, build their confidence and, hopefully, build a lifelong interest in music and performing?

    James Frith

    The hon. Gentleman makes an important point, and I pay tribute to any organisation engaged in that endeavour. My argument is that we need a universal approach as opposed to an incidental one, but I absolutely support the work of that organisation.

    Our education system must support a deepening of the well of talent that we rely on. Music education is falling in the charts: there has been a drop of nearly 10% year on year for subjects not in the Ebacc, GCSE music entries have fallen by 24%, and since 2010, there has been a 17.8% reduction of music tuition in years 12 and 13. That is a worrying trend that Tom Richmond—a former adviser to the Department for Education and now director of the think-tank EDSK—says can “no longer be ignored.”

    There is huge variation between our state and independent schools. Access to music education, with opportunities to learn, play and perform music, remains too exclusive. That must change; we must give every child the opportunity to learn the best of what has ever been said and done. Of course, that means maths and English, literacy and numeracy, but the enrichment that music brings cannot be put to one side. Children should be given the chance to shine at both or either in formal education, whatever their socioeconomic background. They should be invested in with the cultural capital of music education. In March 2019, the BPI’s extensive teacher survey highlighted that just 12% of the most deprived state schools have an orchestra compared with 85% of independent schools, and that over the past five years, state schools have seen a 21% decrease in music provision compared with a net increase of 7% in independent schools over the same period.

    All our schools should turn with the natural and developing needs of every child and be more responsive, patient and dynamic, and show less rigidity and more agility. If schools do not have the time, resources or ​funding to do so, we must address those issues, rather than switching off the approach. Children can be better engaged in their education by expressing their natural creativity and curiosity. In fact, the argument for school tests and exams can be applied to the preparation for a musical performance as well—the idea, the studying, the rehearsal, the performance, and yes, the acclaim. Exam hall meets music hall. If we are to prepare our young people for the emerging landscape and an active, working and loving life, we need to pursue a balanced and expansive curriculum that recognises and hones skills and aptitude.

    The school accountability system has pushed music education to the fringes of the way that a school’s success is judged. Music is being squeezed out of the curriculum. The suite of EBacc subjects does not include music, and although the year 9 curriculum changes may attempt to include music and creative subjects more broadly, their carousel approach means that they dilute and reduce time spent learning the speciality that music education represents. That concern is supported by the BPI’s teacher survey, which says that 31% of state-funded schools have seen a reduction in curriculum time for music. In a recent Musicians’ Union survey, more than 90% of music teachers reported that the EBacc has had a negative impact on music education.

    The APPG for music education’s excellent report on the future of music education goes further:

    “Some schools perceive that they have permission to either ignore the curriculum or justify one-off end of year shows or projects as acceptable forms of music provision. Only weekly progressive music lessons can develop pupils effectively in musicianship skills.”

    My question for the Minister is: would the Government prefer to scrap the EBacc, or to include music in it? If students are not able to participate in music in compulsory education, they are far less likely to pursue it in further or higher education. According to Ofqual, over five years the number of students taking music at A-level has declined by 30%. However, I commend the Russell Group of universities for its decision to scrap the published list of preferred A-level subjects.

    There is of course good practice, which I do not overlook. Some schools in Bury make a difference to their children’s musical education by collaboration. That is innovative, energising and fulfilling, it promotes curriculum richness, and it gives the wider school lots of memorable musical experiences. Bury’s music service is terrific, but the national evidence is that provision is patchy. Studying that evidence, the indices of value all point the wrong way, with a lack of universal, readily accessed music education during formal education time, in school hours, away from the distractions of often complex lives.

    Recently, the Government announced that they will refresh the national plan for music education. What plans do they have to consult the industry? When will they be bringing forward recommendations? Does the Minister agree that a refresh of the national plan provides an ideal opportunity to reset the dial on music in education and to take on the challenge outlined in this debate? Will he consider providing creative education a criterion for achieving an “outstanding” rating from Ofsted, as suggested by my hon. Friend the Member for Cardiff West (Kevin Brennan)?​

    I know that the Minister for Schools recognises the need to get a grip on the issue. He established a music curriculum expert group, and a contract to write a new model music curriculum has been awarded to the Royal Schools of Music exam board. Will he update us on the progress of that work? Will he also assure us that the model music curriculum will work for non-music specialist schools, to ensure that reduced capacity or a lack of specialism in our schools is not a further barrier to progress? Will he explain how monitoring of the impact of any such guidance will be undertaken? According to the BPI, only 44% of music lessons in primary schools are delivered by a music specialist. Support is still needed alongside the model curriculum for teachers who want to specialise in music, whether through a teaching route or a conversion through the postgraduate certificate in education programme. Will the national plan therefore ensure that teacher training and support for music education is improved?

    I welcome recent news that Ofsted is to develop its focus on schools providing cultural capital for children. That is a step forward in ensuring that the role of music education is re-evaluated and reintroduced as a norm for all children in our schools. I note favourably that Ofsted will pick that up as part of its new framework. The Cultural Learning Alliance claims that music enhances cognitive abilities by 17%; does the Minister have a view on that proposition, or has he seen any evidence for it? Will the Minister develop the powerful cultural capital argument through his responsibilities at the Department for Education? Indeed, does he agree that one key goal should be for all children, regardless of socioeconomics, to have fair and free access to music education?

    My final suggestion is that the Government should renew the effort to put music venues at the heart of high street renewal and economic development. The industry business model has been flipped in the past 15 years by digital platforms, streaming services and self-publishing. Yes, all the industry went through a period of denial of the change.

    Kevin Brennan

    Does my hon. Friend agree that the Government missed a real opportunity when rate relief was offered to pubs, shops and other organisations on the high street, but the guidelines specifically excluded music venues from that list? Despite appeals to the Chancellor by me, UK Music and others, the Government refused to change that ruling.

    James Frith

    I agree with my hon. Friend. The Government seem to have a bit of a blind spot when it comes to music venues—or perhaps a tin ear is a better phrase.

    The industry business model has been flipped in recent years, as I was saying, but will the Government look, for example, at YouTube paying artists next to nothing per stream of their work? Some of the revenue that Google makes from that enormous imbalance could go to support live venues for emerging talent across the country and towards our efforts on music education, whether as a new tax or from a partnership.

    Building on the Government’s embrace of the superb agent-of-change campaign, with the protections that brought in, we need more new or improved music facilities for young people outside school hours. UK Music has a network of rehearsal spaces based in ​deprived and disadvantaged communities to offer improved access to music. What plans do the UK Government have to develop and enhance that scheme? Can Bury have one, please?

    Above the funding argument sits a bigger one. Funding plays its part, of course, but there is a bigger one even than that. It is one of choice and a question of priority. What do we expect from our schools and for all our children? If we recognise the value that independent schools place on music and music education, do we still opt to ignore that for the vast majority of all children, accepting the growing inequality of opportunity? Or do we—as I believe we must—ingrain into all our schools the rights of all children to have access to the same opportunities to learn, play, perform and enjoy music?

    The truth is, it is hard to do justice to or to outline in policy what is in fact a deep passion and love. Put simply, one’s faith in the power and possibilities of music, performed, recorded and live, is not just a belief in a light that never goes out; it is the knowledge that music makes life better. Music can still your senses or stir your heart, its message motivates and mobilises, it entertains and, given the chance, it educates us all.

  • Jesse Norman – 2019 Statement on EU Agreements with Third Countries

    Below is the text of the statement made by Jesse Norman, the Financial Secretary to the Treasury, in the House of Commons on 17 July 2019.

    The Government are undertaking a programme of work to replace EU international agreements with bilateral agreements ready for a UK exit from the EU either in the event of no deal or at the end of the proposed implementation period. This is essential preparation for the UK’s withdrawal from the EU to ensure that the UK can, where relevant and possible, maintain the benefits of these agreements, thereby providing continuity and stability to businesses and individuals.

    As part of this programme, officials in HM Treasury and HM Revenue & Customs are working with their international partners to replace EU Customs Co-operation and Mutual Administrative Assistance (CCMAA) agreements with UK-third country bilateral agreements. These agreements will provide a legal framework for the exchange of information between the UK and international partners on customs matters and continued co-operation between the parties’ customs authorities, both facilitating legitimate trade and supporting international efforts in fighting customs fraud. They also fulfil domestic legal requirements for Authorised Economic Operator Mutual Recognition Agreements (AEOMRAs), which deliver important trade benefits to some UK businesses.

    In cases where the other party’s domestic law allows, the “replacement” UK-third country CCMAA agreements will include provision for them to enter into force upon signature, often referred to as “definitive signature”. The parties would thus be bound by these agreements ​upon signature, although the agreements’ provisions would not have effect until the EU CCMAA agreements cease to apply to the UK. Use of definitive signature in this case would enable the UK and its international partners, in the event of EU exit without a deal, to transfer without interruption key customs agreements that are currently in place by virtue of the UK’s membership of the EU. This is because there will be no change in effect of the agreement due to it being a replication of the arrangement the EU currently has in place with the third country. While many international treaties are expressly subject to ratification, it is also common in both UK and international practice, where practicable, for treaties to enter into force upon signature; In UK law, where a treaty enters into force upon signature, it is not subject to the procedures for parliamentary scrutiny as provided in section 20 of the Constitutional Reform and Governance Act 2010. However, as CCMAA agreements are straightforward bilateral agreements, and rely on provisions in the Taxation (Cross-Border Trade) Act 2018, which has already been approved by Parliament, the Government consider that definitive signature is appropriate in these instances.

    The Taxation (Cross-Border Trade) Act 2018 provides the necessary powers for the UK to create a stand-alone customs regime once the UK exits the EU. In particular, section 26 of this Act allows for the UK to share information on customs matters with international partners and therefore provides the necessary legal basis from a UK perspective for the co-operation between parties outlined in the CCMAA agreements.

    Once signed by both parties, a copy of each UK bilateral CCMAA agreement subject to definitive signature will be laid before Parliament as a Command Paper in the treaty series for information in the normal way.

    Where third country partners’ domestic law does not permit them to be bound by signature, thereby requiring ratification by them, the CCMAA agreement will not use definitive signature but will be drafted to provide for consent to be bound by a two-stage process of signature and ratification.

  • Jeremy Hunt – 2019 Statement on International Criminal Justice

    Below is the text of the statement made by Jeremy Hunt, the Foreign Secretary, in the House of Commons on 17 July 2019.

    Today we mark the Day of International Criminal Justice, which provides an opportunity to update Parliament on the UK’s support for the principles and institutions of international justice in the previous calendar year.

    Support for international criminal justice and international humanitarian law is a fundamental element of the UK’s foreign policy. The UK believes that justice and accountability for the most serious international crimes is crucial to building lasting peace and security.

    The UK Government believe that the International Criminal Court has an important role in pursuing accountability, but only when national authorities are either unable or unwilling to do so. The UK has long ​provided political, financial, and practical support to the ICC. We are one of the largest financial contributors to the Court, contributing £9.7 million in 2018. An example of the UK’s practical support was the sentence enforcement by the Scottish Prison Service of Mr Ahmad Al Faqi Al Mahdi, who was convicted of destroying cultural heritage sites in Timbuktu.

    In 2018, the ICC considered situations from across Africa, the middle east, Europe, south-east Asia and South America, with 11 situations subject to formal investigations, and proceedings continuing in three trials: the Ongwen case (Uganda), the Ntaganda case (Democratic Republic of the Congo), and the Gbagbo and Blé Goude case (Ivory Coast). Al Hassan (Mali), and Yekatom (Central African Republic) were surrendered to the ICC.

    The ICC’s trust fund for victims plans to launch an assistance programme in the Central African Republic, to provide physical and physiological rehabilitation, alongside material support for victims and their families. The UK contributed funds to the TFV for reparations to victims in Mali.

    While the UK continues to support the role of the ICC, reform is required for the ICC to fulfil its mandate as intended under the Rome statute. The UK will work with other states parties, the Court, and civil society, to achieve this goal.

    The International Residual Mechanism for Criminal Tribunals (IRMCT) continued its mandate to fulfil the residual functions of the International Criminal Tribunal for the former Yugoslavia (ICTY) and the International Criminal Tribunal for Rwanda. The IRMCT delivered an appeals judgment in the case of Radovan Karadžić, the former Bosnian Serb politician convicted in 2016 of genocide in Srebrenica. Karadžić’s sentence, increased from 40 years to life, sends a clear message that those who commit atrocities will be held to account. The IRMCT continued to hear the retrial in the case of Stanišić and Simatović and issued a decision in the Šešelj contempt case.

    The UK supported the Extraordinary Chambers in the Courts of Cambodia and the Residual Special Court for Sierra Leone through a total contribution of over £500,000. The UK has also been at the forefront of international efforts to gather and analyse evidence of atrocities committed in the middle east. Since 2016, we have committed £950,000 to the UN International Impartial and Independent Mechanism (HIM) to support the preparation of legal cases for serious crimes committed in the Syrian conflict. The UK also led efforts to adopt a UN Security Council resolution establishing an investigative team to collect, preserve and store evidence of Daesh atrocities in Iraq, and contributed £1 million towards its operation. The first mass grave exhumation was in March 2019 in the Yezidi village of Sinjar.

    In reaction to the Rohingya crisis in Burma, the UK worked closely with the EU and the Organisation of Islamic Co-operation to secure a UN Human Rights Council resolution to establish a mechanism to collect and preserve evidence of human rights violations to support future prosecutions.

    We will continue to update Parliament on our support to international criminal justice through our annual human rights report.

  • James Brokenshire – 2019 Statement on Grenfell Tower

    Below is the text of the statement made by James Brokenshire, the Secretary of State for Housing, Communities and Local Government, in the House of Commons on 17 July 2019.

    Two years on from the Grenfell Tower tragedy, my priority is to ensure that everyone affected is receiving the support they need and deserve. The independent Grenfell recovery taskforce continues to provide challenge and advice to the Royal Borough of Kensington and Chelsea (RBKC) in its response to the Grenfell Tower tragedy. I recently received its fourth report, which I am today depositing in the Library of the House and publishing in full at gov.uk, alongside my response.

    The taskforce has outlined the progress that the council has made since their last report of November 2018. RBKC have published its Grenfell recovery strategy and committed £50 million over the next five years to develop services to support the recovery. The recovery strategy is also prioritised in the new council plan. The taskforce reports that the dedicated service for the bereaved and survivors is the successful result of the council co-designing the service with its users. I welcome these significant steps forward.

    On rehousing, the taskforce has again offered reassurance to Ministers that the council’s approach is appropriate and sensitive to the long-term needs of survivors. I am pleased that there has been further progress since I received the taskforce’s report with two more families moving into permanent accommodation. However, as I said in my oral statement on 10 June I remain concerned that households are still in emergency accommodation, including one in a hotel.

    The taskforce has also welcomed the council’s demonstrable appetite to modernise its governance procedures. It cites its implementation of recommendations by the Centre for Public Scrutiny, including establishing a programme of listening forums. The taskforce has also identified the beginning of a culture change initiated by the chief executive and leader of the council.

    The taskforce has highlighted developments in the council’s approach to community relationships and communications. RBKC has increased the number and means by which it engages with its residents including new meetings between the political leadership and some of those most affected by the tragedy. The taskforce also reports that it is seeing pockets of good practice pertaining to fostering good relationships with service users and the community.

    Whilst the taskforce has noted good progress in many areas it is also clear that the council still faces significant challenges. The taskforce has identified that the pace by which the recovery is being implemented is still too slow and that this needs to be addressed. The taskforce has highlighted that strands of the recovery strategy remain in development, as well as the community programme and economy strategy. The taskforce therefore remain concerned about the capacity and corporate capability of the council to drive sustainable change. Although the rehousing programme is nearing completion the taskforce states that the council still faces substantial wider housing challenges. Whilst there is a programme to support and ​develop all councillors, the taskforce has noticed occasions where member behaviour has caused it concern. There is a high degree of social capital that the council has yet to fully tap into and the taskforce calls for an innovative approach to harness this enthusiasm. The taskforce has also highlighted that the culture change has still not permeated all levels of the council and silo working remains an issue.

    The taskforce has set the bar high for RBKC’s recovery. It is important there is ambition and pace in the council’s recovery efforts over the next three to four months in responding to the taskforce’s recommendations, including:

    Urgently implementing its recovery strategy;

    Fostering a council-wide culture change so that everyone is working together;

    Clearly communicating its recovery plan and develop stronger communications skills;

    Ensuring that the senior team has the appropriate skills and resilience;

    Making a clear commitment to creating a better relationship with its community.

    I am assured the council has already set in train action to meet these recommendations. This includes a paper outlining its plans to implement organisational change at the council by 2020.

    I will review the process in September, by which point I hope the council will have made sufficient further progress. I look forward to continuing to work with the taskforce.

  • Sir John Major – 2019 Statement on the Conservative Leadership

    Below is the text of the statement made by Sir John Major, the former Prime Minister from 1990 until 1997, on 22 July 2019.

    I read Gordon Brown’s speech this morning with interest and agreement.

    It is a timely moment to note that whoever becomes our Prime Minister this week, he will be far more than Leader of the Conservative Party.

    As for every Prime Minister, he must act for our nation as a whole – not just one part of it. He must also remember that no-one born this century voted for Brexit – let alone a “no deal” Brexit.

    Words and actions have consequences, and never more so than when they are those of the Prime Minister. As the evidence mounts of the probable economic and social damage of a “no deal” Brexit – and of the rising opposition to it – the new Prime Minister must choose whether to be the spokesman for an ultra-Brexit faction, or the servant of the nation he leads. He cannot be both, and the choice he makes will define his Premiership from the moment of its birth.

    As the most powerful politician in the four nations of our United Kingdom, any Prime Minister has the right to expect support but – if he acts as the spokesman for one hard-line faction only – he cannot complain if he faces uncompromising opposition from those who believe they have had their views ignored.

    I hope our new leader understands this, and is fully prepared for the enormity of the task before him.

  • Sajid Javid – 2019 Speech at Coin Street Community Centre

    Below is the text of the speech made by Sajid Javid, the Home Secretary, made at the Coin Street Community Centre in London on 19 July 2019.

    Growing up in the seventies, looking like this, extremism was part of my life.

    I changed my route to school to avoid members of the National Front.

    I watched my mum time and time again scrub the word ‘Paki’ from the front of our shop.

    And – rightly or wrongly – as a child, I punched a bully who used the same racist slur to my face.

    Although perhaps it’s not a great idea to bring up my past indiscretions just before I get a new boss We’ve undoubtedly come a long way since my school days.

    I’m proud to say we’re now a more multi-racial, more welcoming, and a more tolerant society.

    But just last week I met schoolboy Jamal Hijazi, whose heart-breaking story took me right back to my childhood.

    A Syrian refugee who wasn’t just insulted by a classmate, he was attacked.

    Not in the 1970s, but just a few months ago.

    No one can hear his moving story and deny we still have a problem in this country.

    And it’s not just racism, with the blind hate of extremism showing its face in many ugly forms.

    In 2015 we published our ground-breaking Counter Extremism Strategy.

    Back then, the Prime Minister led the charge as Home Secretary, and I commend her pioneering work.

    But four years on, it’s time to take stock and to talk openly about the threat, and to admit it’s got worse.

    Yes, progress has been made.

    But when I hear what happened to that schoolboy, I know we have to do more.

    So we set up the Commission for Countering Extremism to help us do just that.

    I thank them for their work so far, and while I do welcome their first findings, they lay bare the ugly truth.

    Just over half of the respondents to their consultation had witnessed extremism in some way.

    One in five had seen it in their own area.

    Almost a quarter online.

    The targets are many and varied.

    And the top group identified by the Commission as most at risk of extremism? Everyone.

    When over half of us have witnessed extremism, it’s gone from being a minority issue to one that affects us all and the way we all live our lives is under unprecedented attack.

    People are getting angrier about more things – and extremists are quick to try and exploit that.

    In 2015, our focus was on extreme Islamists, particularly the lure of Daesh.

    While their physical stronghold has now been wiped out, that threat certainly remains.

    But now the fault lines dividing our society have splintered and spread.

    Reports of far-right extremism, antisemitism and anti-Muslim hate are on the rise.

    Women are being robbed of opportunities by religious extremists.

    The internet has further emboldened those that are inclined to hate.

    Angry words whip up a climate of fear and incite hate, violence, public disorder, oppression and segregation.

    Women beaten on a bus because they are gay, sledge hammer attacks on mosques, children being forced into marriage.

    Christians, Muslims and Jews being slaughtered in Sri Lanka, Christchurch and Pittsburgh.

    Public discourse is hardening and becoming less constructive.

    Around the world populism, prejudice – and even open racism – have catapulted extremists into power.

    Now I’m proud to say this has not happened in mainstream politics here.

    We’re naturally liberally minded people.

    We remain the most successful multi-racial democracy in the world.

    Thankfully, our politics has not gone down the same road as much of Europe and the US.

    But we must act now, to avoid sliding into the barely masked racism of nationalism.

    Because there’s one thing I know for sure about this country: we’re better than that.

    We won’t just accept rising anger.

    We won’t just slap ourselves on the back and talk about the success of the Counter Extremism Strategy.

    We won’t deny the threat is now worse than ever.

    That’s why I’m here to set out my three part approach to counter that threat.

    Because if we are to stop extremism in its tracks we must have the courage to confront it, the strength to take decisive action, and the foresight to tackle the root causes.

    Firstly, we all need the courage to confront this issue.

    Why? Because tackling extremism isn’t easy.

    People are scared to talk about it.

    This is a sensitive issue and sometimes it can easily cause offence.

    But I’m here regardless, because we desperately need a national conversation about extremism.

    I will not stay silent and create a vacuum where extremist views can fester and grow.

    So I want to be frank about some of the challenges we face.

    For a start, what exactly is extremism?

    Why have we struggled to come up with a definition?

    The threat is not black and white.

    There are countless shades of grey between a loaded comment, an online threat, and a terror attack.

    Extremism can be the thin end of a wedge.

    The unpleasant words that skate on the right side of the law, but stir up hate and drive violence in others.

    Of course, you shouldn’t arrest everyone with a suspect view.

    Of course not. I won’t be the thought police – people are entitled to hold and express their own views.

    But the challenge is being able to identify where an opinion crosses the line into extremism.

    When it goes from free speech to the corrosive spread of dangerous propaganda.

    When it incites harm and becomes criminal.

    At its heart, extremism is a rejection of the shared values that make this country great: freedom, equality, democracy, free speech, respect for minorities, and the rule of law.

    It attacks our society and tears communities apart.

    It turns us against each other and can lead to violence, discrimination and mistrust.

    But there’s a delicate balance between personal and religious freedom and protecting our shared values.

    In this country, everyone has the right to observe their cultural and religious practices without any fear of abuse.

    We celebrate differences and in part that’s what makes us great.

    Our shared values are not about forcing everyone to drink tea, eat fish and chips, and watch the cricket – although I hope they watched it the weekend.

    But cultural sensitivities must not stop us calling out extremism.

    To back away from a problem because of someone’s ethnicity is not liberal, it is weak.

    Of course, we need to be measured.

    But we must not be afraid to confront any problem in any community.

    Whether group-based child sexual abuse, or the oppression of women through FGM, forced marriage, so-called honour-based violence, I refuse to stand silently by.

    The protests at Parkfield and Anderton Park schools in Birmingham bring this balancing act, I think, into sharp focus.

    Earlier this week Panorama focused on the row over lessons on equality that include teaching about families with same sex parents.

    Sara hit out at the extremists who have hijacked the protests, distorting genuinely-held religious views of parents. It is entirely right that parents with legitimate concerns talk to their schools about what it being taught in a calm, constructive way.

    The right to protest and oppose government policy is one we hold dear, but where that spills over into intimidation of pupils and teachers, it is unacceptable.

    And I agree with Sara that it is entirely wrong if any situation is exploited by extremists.

    Of course, words alone are not enough.

    So the second part of my approach is showing strength with decisive action against extremism.

    As the threat comes in many forms, so must our response.

    So we need to combine the more gentle approach of working with communities and promoting shared values with an unashamedly tough approach to those who spread extremist poison.

    So our work embraces those we need to help fend off extremists:

    strengthening communities through our Building A Stronger Britain Together programme and the Integrated Communities Strategy

    protecting religious institutions from hate crime with our Places of Worship Protective Security Programme

    and boosting integration by committing to new British Values Tests and strengthened English Language provision

    But we’ve also been unafraid to be robust in our approach to the people and organisations that pose the highest threat:

    refusing to let the worst extremists into the country to spread their vile views –

    I’ve personally excluded 8 since I have become Home Secretary – from a far-right white supremacist, to a US black nationalist, and extremist hate preachers from a number of faiths

    removing British citizenship from dual nationals to keep dangerous individuals with the most extreme views out of the UK

    and launching our Online Harms White Paper, to ensure companies take more responsibility for harmful content on their platforms

    But we know that more needs to be done, and we know that we must keep pace with the changing threat.

    So, I can announce today that in anticipation of the Commission’s full report, I’ve asked my officials to start work on a comprehensive new Counter Extremism Strategy.

    And while we wait, I will continue, in that time, to call out extremism wherever I see it.

    We all have a role to play in stopping any normalisation or legitimisation of these views.

    Extreme views can be found on all sides of the spectrum, from Islamist organisations like Hizb u-Tahrir and IHRC, to far right groups like Britain First and Generation Identity.

    And those that spread intolerance and division from all corners are often given a platform by media and political figures.

    Supposedly mainstream groups can be guilty of that too – groups like MEND. They aren’t always as intolerant of intolerance as they may claim to be.

    One of the most prominent organisations that rejects our shared values is called CAGE.

    When challenged they claim the Government is anti-Muslim.

    Something they will no doubt say about me later today.

    I will act against those who seek to divide us wherever I can.

    So I have amended the guidance for sponsoring migrant workers.

    This will allow us to refuse or revoke a sponsor licence where an organisation behaves in a way that is inconsistent with British values, or that’s detrimental to the public good.

    I can tell you now that I plan to revoke CAGE’s licence on this basis, subject to representations.

    I will do all I can to ensure groups like CAGE are not trusted with the privilege of sponsorship and I will see it removed.

    Now the third part of my approach is having the foresight to tackle the root causes of extremism before it takes hold.

    I know what it’s like to be an outsider.

    I want everyone to have the opportunities that I had, to feel they belong to our brilliantly diverse Britain.

    But, sadly not everyone does, and that cultural separation can sow the seeds of extremism.

    The extremists set out to fracture our society, therefore we must unite to defeat them.

    We need fewer labels that divide, and more overlapping layers that draw us together.

    First, community – when people truly come together we build unbreakable local networks that extremists cannot breach.

    Second, language – I saw how hard it was for my own Mum when she came to this country speaking very little English.

    We estimate that 1 million people living here today that cannot speak English well or at all.

    And if we can’t communicate with each other, how can we build bridges?

    So, I’m making it my mission to ask for more money in the Spending Review to properly fund lessons and break down language barriers.

    Third, integration – A couple of years ago I visited a primary school in my home town of Rochdale where around 95% of the pupils were Asian. 95%.

    And only a mile or so down the road was another primary where around 90% of the pupils were white.

    If we want to see more social cohesion we must rally against segregation and have a more positive approach to integration.

    And finally, national identity – we must celebrate the qualities that define us as a nation.

    My parents were proud to choose to be part of this country and I want to inspire that same passion in others, to encourage citizenship and a sense of belonging.

    Of course, I understand that there are some concerns about immigration.

    Loose language is used at all levels.

    I’m from an immigrant family, I know what it’s like to be told to go back to where you come from – and I don’t think they mean Rochdale!

    Some worry that new arrivals will take over their communities – that our national identity will be diluted. I firmly reject that.

    I’ve seen how immigration can enrich our country and I welcome it.

    I know how much immigrants have contributed to our culture, our society, our economy and our public services. Just this week I was thrilled to meet three cricketers who helped win the World Cup for this country.

    One was born in Barbados, one was born in New Zealand, one was born in Ireland – all three of them English heroes.

    I recognize the huge benefits of immigration, but if people from different backgrounds are living separate lives in modern ghettos then it’s no good for anyone.

    To be truly pro-immigration we must be pro-integration too.

    And to do this, we must confront the myths about immigration that extremists use to drive divisions.

    We know the scale is exaggerated to stoke up fear and that they use immigration as a proxy for race. Sweeping plans to cut immigration as if it’s automatically bad can add to the stigma.

    In 2015 a survey of school children found the average estimate was that nearly half of people in the UK were foreign born. That’s what the children thought.

    The truth according to the 2011 census? 13%.

    A staggering 60% of the same group believed it was true that “asylum seekers and immigrants are stealing our jobs”.

    I won’t ignore that some people feel this way, but we must not be afraid to confront these issues with an honest and open public debate.

    Only by talking about this can we show how much integration enriches our communities.

    We all benefit, because an integrated society is a strong one, where different cultures form the layers of a watertight national identity: interlocking to form a united front. A united front so smooth there will be no footholds left for extremists.

    This multi-layered approach will help us tackle extremism.

    This is not just a job for the Government alone.

    But we will lead from the front.

    It takes the whole of society to challenge these vile views.

    Everyone has a part to play: *broadcasters who must not give platforms to extremists… *police who must swoop on the worst offenders… *and public figures who must moderate their language.

    And anyone can challenge the myths that are peddled by extremists that deepen divisions.

    So tell your friends and shout it loud and proud: people from minority backgrounds do not steal their jobs, they’re not terrorists, and that there is no global ‘Zionist conspiracy’.

    Extremism is a problem that isn’t going to go away so I’m here to redouble our commitment to tackle it head on.

    I will not flinch from confronting extremism.

    I will do everything in my power to stop those who seek to undermine our country.

    And I will tackle the root causes.

    To unite communities, to protect our fundamental values, to protect those most at risk.

    I’ve made this my mission and I’m asking you to do the same.

    Together let’s call out hate and unite our society and create a stronger, better, bolder Britain.

    Thank you very much.

  • David Lidington – 2019 Speech at CSSF Annual Report

    Below is the text of the speech made by David Lidington, the Chancellor of the Duchy of Lancaster, on 18 July 2019.

    Good afternoon, and thank you for having me here today to speak about the invaluable work the Conflict, Stability and Security Fund finances around the world.

    Over the last ten years, the very nature of conflict and instability has changed dramatically. The world is facing a rise in intrastate violence, complicated by insurgencies, terrorism, serious and organised crime.

    In addition to this, conflicts are lasting longer. And because they are increasingly international, these conflicts risk having an impact on the security of the UK as well.

    Complex conflict requires creative solutions. So four years ago, the government decided it needed a more agile, cross-departmental approach, to complement the long term work spearheaded by DfID, the FCO and the Ministry of Defence.

    Since its creation in 2015, the CSSF has enabled the government to work across departments, delivering support to fragile states at risk of instability, as well as states in the throes of complex conflicts.

    Four years later, this approach is seeing strong results, as we see in the Annual Report released today.

    It has contributed to halving the number of UN Peacekeeper casualties in Mali, Democratic Republic of Congo and the Central African Republic – the three most deadly UN Peacekeeping Missions.

    The CSSF has encouraged 3.1 million more women to register to vote in Pakistan.

    It has financed the retraining of more than 150 reformed Boko Haram soldiers giving them the vocational skills they need to establish a peaceful life.

    It has contributed to saving the lives of more than 3,000 vulnerable migrants in the Aegean and the Mediterranean seas.

    But these are just a few of the success stories you find turning the pages of the annual report, further demonstrating this country’s well-earned reputation as a global leader in managing conflict.

    Today, the UK retains its long-held role as a trusted voice on the global stage and the only permanent member of the UN Security Council to spend both 2% of GDP on defence and 0.7% of GNI on development. So it is unsurprising that no other country has a fund as large in scope or as ambitious as the CSSF.

    Its unique ability to spend both Official Development Assistance and non-ODA money means that the CSSF can be agile and responsive. It gives it the flexibility to trial new approaches, share UK expertise and leverage funding from other donors or government departments, to achieve long term change. And it builds on UK expertise in areas like policing, counter terrorism, defence and intelligence to save lives and improve security, both at home and abroad.

    With a budget of £1.26bn, the CSSF brings together 13 government departments and agencies to deliver 90 programmes in no fewer than 70 different countries. Guided by the National Security Council, this allows the fund to be responsive to new and emerging threats. These are the kinds of threats which directly affect the UK’s domestic security, like the rise of hostile state actors, the increasing challenge to the Rules Based International System, growing concerns over climate change, and the rise of Serious and Organised Crime.

    Serious and Organised Crime affects British citizens, more often, than any other national security threat, whether it’s online sexual exploitation or firearms offenses. And this crime comes at a cost – for the UK, at least £37 billion every year. So last year, under a new strategy, the CSSF launched a new £1.3m allocation to pay for a global network of advisers on serious and organised crime.

    This is an important area for both UK and global stability and security. For example, when presented with the name, the “Conflict, Stability and Security Fund,” one might not think of cracking down on illegal cigarettes. But cigarette smuggling in the Western Balkans has a direct impact upon the UK.

    It costs the UK economy £2.5 billion every year in lost tax revenues. But it also helps to perpetuate the abhorrent practice of people trafficking and illegal drug smuggling across Europe, providing income for serious and organised crime networks.

    And today, the UK’s National Crime Agency is working with the Kenyan authorities to crack down on international trafficking in the region and the sexual abuse of children. Since 2017/18, the Unit has rescued more than 90 survivors of these crimes.

    CSSF programmes are also supporting our broader global policy objectives. With ongoing Russian aggression at its borders, Ukraine remains vulnerable to attack. A strong and stable Ukraine has long been a top UK priority, and through the CSSF we are able to coordinate our diplomatic, humanitarian and defence and security efforts for a more holistic approach.

    For example, by educating school children and communities and clearing 1 million square metres of land, we have helped halve landmine casualties from 2017-2018.

    This comprehensive approach can be beneficial for the UK, too. We have provided military support and training to over 13,000 members of the Ukrainian Armed Forces in infantry skills, medical, operational planning and logistics – which in turn provides the UK with in-depth, on-the-ground insight into the challenges of defending against Russian aggression.

    And we are even using CSSF to act on this government’s commitment to combat climate change. In Columbia, the CSSF has helped maintain and implement the peace process since 2016.

    But peace – however longed-for – can sometimes have unintended results. An unfortunate effect in Colombia has been an increase in the rate of deforestation, as communities recover from conflict and former fighters return home to find limited economic opportunities. So we are working with the Government of Colombia to bring former fighters together with local communities to design jobs like eco-tourism and farming that offer alternatives, not only to violence, but to activities that damage the environment to protect Columbia’s natural resources.

    Its clear CSSF programmes are making a real difference in the lives and communities of those affected most by violence and instability. But it’s also demonstrated an ability to adapt as the nature of conflict continues to evolve.

    Now there are areas for improvement and change. By seriously considering external recommendations, like those from the Independent Commission of Aid Impact, the CSSF has significantly improved its programme management, transparency and monitoring and evaluation practices. And I was pleased to see in the ICAI follow up report published today an acknowledgment of these improvements.

    This progress should be applauded. As government comes to the end of this Spending Review period, the CSSF will need to ensure that it can continue to learn and adapt. And we will need to be clear about how a fund of this size and structure can be used most effectively.

    So as we celebrate the successes of this ambitious fund, with many of those who made them possible, I look forward to seeing what comes next.

    Because in a world of competing conflicts and challenges, the UK’s investment in global security, and its willingness to trial new approaches and respond to emerging threats, speaks volumes.

    It emphasizes that our leadership in this area is a responsibility we do not take lightly, whether that is financially or politically.

    And it sets the standard for countries everywhere as we work together to create a more peaceful and a more prosperous world.

    Thank you.

  • Jeremy Hunt – 2019 Statement on Iran

    Below is the text of the statement made by Jeremy Hunt, the Foreign Secretary, on 20 July 2019.

    I had a fairly long conversation with the Iranian Foreign Minister, Javad Zarif, this afternoon. And it’s clear from talking to him and also statements made by Iran that they see this as a tit-for-tat situation, following Grace1 being detained in Gibraltar. Nothing could be further from the truth. Grace1 was detained legally in Gibraltarian waters because it was carrying oil against EU sanctions, to Syria, and that’s why Gibraltarian authorities acted totally with respect to due process and totally within the law.

    The Stena Impero was seized in Omani waters in clear contravention of international law. It was then forced to sail into Iran. This is totally and utterly unacceptable.

    It raises very serious questions about the security of British shipping and indeed international shipping in the Straits of Hormuz. And so, we spent a long time this afternoon in COBR discussing how we can guarantee the security of British and international shipping. A statement will be made to Parliament on Monday to update the House of Commons and the country on the measures that we are going to take, the further measures. But already this weekend we have raised the threat level to level three – that was a decision made by the Transport Secretary. But we will take further measures and announce those measures going forward on Monday.

    Our priority continues to be to find a way to de-escalate the situation. That’s why I reached out to the Iranian Foreign Minister, that’s why due process in Gibraltar continues. But, we need to see due process happening in Iran as well. We need to see the illegal seizing of a British-flagged vessel reversed, we need that ship released, and we continue to be very concerned about the safety and welfare of the 23 crew members.

  • Caroline Dinenage – 2019 Speech on Batten Disease

    Below is the text of the speech made by Caroline Dinenage, the Minister for Care, in the House of Commons on 16 July 2019.

    I congratulate my hon. Friend the Member for North East Somerset (Mr Rees-Mogg) on securing this important debate on what is a heartbreaking issue, as I am sure you will agree, Mr Speaker. He and other Members have spoken up movingly and with great passion about and on behalf of their constituents, and I am grateful to them for doing so. I understand how vital it is for patients and their families to be able to access new medicines as quickly as possible. This is one of the hardest types of debates that one has to respond to as a Minister, when we can put ourselves in the position of the families up and down the country who are facing such a desperate situation.

    I will endeavour to respond as fully as I can to the issues that my hon. Friend and other Members raised, but I should begin by saying, sadly, that I am unfortunately unable to comment on matters relating to the availability of Brineura, a drug used to treat Batten disease, as this is currently subject to an active judicial review procedure.

    As we have heard from hon. Members, Batten disease is a terrible condition that progresses rapidly, leading to loss of speech, mobility and vision, progressive dementia and early death. It is a rare genetic disease, and it is estimated that around three to six children in the UK are diagnosed each year, with around 30 to 50 children living with the condition. Current treatment options are limited to symptomatic relief and supportive care. I fully understand how vital any new treatment option could be to the families of children with this rare and devastating condition.

    The Government want patients, including patients with rare diseases such as Batten disease, to be able to benefit from effective new treatments. It is in the interests of all NHS patients that we have a system in place for making evidence-based decisions on whether new medicines should be made routinely available to patients. That is why we have NICE, which makes independent, evidence-based recommendations for the NHS.

    NICE now operates two separate programmes for the assessment of new medicines: first, a technology appraisal programme through which NICE assesses the vast majority of new medicines; and secondly, a highly specialised technologies programme that is reserved for the evaluation of very high cost drugs for the treatment of very small numbers of patients suffering from very rare diseases in England who are treated in a handful of centres in the NHS.

    Where NICE recommends a treatment for use on the NHS, NHS commissioners are legally required to make funding available so that it can be prescribed to patients. This is reflected in the NHS constitution as a right to NICE-approved treatments. The intention of NICE is to have a system that means that the public can have confidence that the price paid by the NHS is consistent with the improvement in health outcomes that the medicine brings, ensuring fairness and the best possible use of funding for patients and the NHS.​

    As I said to the hon. Member for Newcastle upon Tyne North (Catherine McKinnell), NICE has recommended around 80% of products it has assessed. Through its important work, many thousands of patients, including patients with rare diseases, have benefited from access to effective new treatments.

    It is right that NICE’s processes continue to evolve with developments in science, healthcare and the life sciences sector. That is why it keeps its methods and process updated through periodic review that includes extensive engagement with stakeholders, including patient representatives, drug manufacturers and clinicians. In this spirit of continuous development, through the 2019 voluntary scheme for branded medicines pricing and access, which was published in December, the Government announced that NICE would be undertaking a review of its methods and processes in 2019-20 for both its technology appraisal and the highly specialised technologies programme.

  • Jacob Rees-Mogg – 2019 Speech on Batten Disease

    Below is the text of the speech made by Jacob Rees-Mogg, the Conservative MP for North East Somerset, in the House of Commons on 16 July 2019.

    Mr Speaker, may I begin by thanking you for allowing me this Adjournment debate and for your personal encouragement to me to bring it forward? My gratitude goes beyond that; I also thank you for the way you so encourage this House to hold the Government—the Executive: those who rule us—to account.

    I am also grateful to the hon. Member for Newcastle upon Tyne North (Catherine McKinnell) and the terrific campaign she has been running in relation to Batten disease; she has done more than almost anybody else to highlight it. I note that two of my hon. Friends on the Front Bench, my hon. Friends the Members for Macclesfield (David Rutley) and for Pudsey (Stuart Andrew), have a great interest and a constituency concern in this issue, although they are not allowed to intervene on me for obvious reasons. I want to put their concern on the record. I know that others too might wish to intervene on this very important subject.

    This evening’s debate is about my constituent, Max. Max is a little boy; he is eight years old. He is a lively boy, and those of us who have children know what eight-year-olds are like—what a joy they are and how wonderful their spirit is. But Max has this horrible disease. Batten disease is perhaps the cruellest disease that one can imagine as a parent. We all see our children grow; we see them learn to walk and then to talk, and to run and to do all the things that children do. Batten disease means that they then go backwards. It tends to hit at about two—on a child who has shown no signs until then. The talking stops and the walking becomes more difficult. The average life expectancy of a child with Batten disease is between six and 12.

    The blow to parents, and to grandparents and families, that this is and must be, is so hard to bear and so difficult; it is so sad for them to see a child who they would hope would be going on into adulthood instead declining, and declining steadily. It is a neurodegenerative disease. To put it in layman’s terms, it is essentially dementia of the young: all that we see of Alzheimer’s in people in their 70s, 80s and 90s is instead happening to a child.

    But there is a drug that delays this. It is not a cure and it does not reverse the disease, but it seems to stop its progression—nobody knows for how long. It is called Brineura and it has been shown to be effective on a number of children who have taken it. So far in this country there are only two children for whom it would be suitable who are not receiving it, one of whom is Max. The others are receiving it as part of a trial that has been successful and is still being funded by the drug company—but that might not continue for ever, so there is an argument for them as well. I mentioned earlier the enormous contribution that the hon. Member for Newcastle upon Tyne North has made, and I am very glad to see her in her place; without her, I do not think this really important matter would have achieved the publicity that it has received.

    This drug Brineura has been given a quality-adjusted life years rating by the National Institute for Health and Care Excellence of 30, which is the highest rating that it ​gives. That means that the drug is thought to provide 30 extra years of life of good quality. That is a stunning achievement for any drug, and it has been given the highest rating and the highest amount of funding, but unfortunately that amount of funding is not enough. The pricing cannot be agreed between NHS England, NICE and BioMarin, the manufacturer.

    BioMarin is a drug company that needs to make a return on the amount of money it has spent. To be fair to the company, it spent $696 million last year on research and development and made a pre-tax loss of $142 million, so it is not an enormously profitable, rapacious company that is being difficult. One might think, however, that having lost $142 million, it might quite welcome a little bit of income from the national health service. If I were one of its shareholders, I might suggest that it would be a good idea to do something with the national health service so that the company could get some income back on its $696 million of research and development expenditure in 2018. Without an agreement between the buyers and sellers, Max will not receive the drug and his standard of life will decline month by month.

    Andrew Griffiths (Burton) (Con)

    My hon. Friend will know about my constituent, Michal Luc, who is in exactly the same situation. We talk to parents who see their children degenerating and dying before their eyes. Does he agree that they cannot understand how we can argue over money when their children’s lives are disappearing before their very eyes?

    Mr Rees-Mogg

    I completely agree with my hon. Friend.

    Generally, I recognise the need for public expenditure constraint. Money always has to come from somewhere; it has to be either taxed or borrowed. However, in a country that spends over £800 billion a year, and £120 billion or whatever it is a year on the national health service, can we not find just over £6 million a year for this small number of children who have a terrible disease that can be held at bay?

    Catherine McKinnell (Newcastle upon Tyne North) (Lab)

    I very much commend the hon. Gentleman for securing this hugely important and timely debate. Does he share my concern that we seem to be witnessing a bit of a blame game between NHS England, NICE and BioMarin? Does he agree that they just need to get round the table and resolve this issue one way or another, even if it requires the Minister to bring them together and knock some heads together to get them to come to a resolution? The rapid-acting nature of Batten disease means that my constituents Nicole and Jessica Rich and the other children who are affected just do not have the time for this wrangling to carry on.

    Mr Rees-Mogg

    The hon. Lady is absolutely right. The terrible thing is that in the month that has passed since I first raised this matter in the House, Max’s condition will have slightly deteriorated, and in every month that goes on while we are debating this, not just Max but all the children with this condition will go downhill. That is what happens with this disease.​

    There are questions to be asked about the structure of policy on rare diseases, and about the Government’s response and what powers they have. As I said at the beginning, accountability through this House is of fundamental importance. By law, the Secretary of State still maintains overall responsibility for the provision of healthcare in this country. It is the Secretary of State who is accountable. We cannot make NICE accountable; it has not been structured to be accountable. It does not appear in the Chamber to tell us what it is doing—that is done by second degree, through Ministers. We really need to know what, if any, reserve powers Ministers may have to be able to do something about the situation.

    Can something be done? Can a budget exception be provided, so that funds may be made available for these rare diseases? Can something be done, as has been done for cancer treatments, to provide money where exceptionality can be seen? Of course these drugs are expensive: they affect so few people, and the drugs companies will not develop them if they cannot at least make their money back. Can something be done as in other areas, particularly cancer, to ensure that the drugs can be provided? Can the rule changes in 2017 that made it harder to fund rare disease drugs be reviewed and possibly reversed? Since 2017, the financial aspect has become much more significant than it was before.

    Although I accept, of course, that there is a need to look at costs, when we are talking about eight-year-old children, we are not talking about a cost for people who only have weeks or months to live, but about a child who could have years of a high quality of life ahead of him. That must be where most of us as taxpayers think it is right to spend money and where we think that the moral case for spending money is extraordinarily strong.

    Catherine McKinnell

    Does the hon. Gentleman share my concern that the impact of rare conditions such as Batten disease is not just felt in the child’s physical health, but in their mental health and the mental health of their wider family? The system for judging what is value for money and how our NHS should spend its money needs to take a much broader approach when calculating the value of these medicines in those circumstances. It needs to get it right.

    Mr Rees-Mogg

    The hon. Lady puts it so well—and it is not just the family, but the community. On Saturday, the village of East Harptree, a small village in North East Somerset, came together for its annual village fête. All the funds raised were to try and help Max. He is at the local primary school, East Harptree Primary School. The week before, they had the school races. All the children had gone back a few yards so that Max could win, for the first and only time in his life, the race at his school. That is such a wonderful example of community. If communities can do that, surely the Government can help too, because it is not just Max and not just his wonderful family who are trying so hard to do the right thing for him. A whole community would be pleased, and would feel it was being taken notice of, if Max were helped—all his schoolfriends and schoolteachers and the whole community in East Harptree.

    Catherine McKinnell

    The hon. Gentleman gives a really powerful example. The whole of the community in Newcastle knows about Nicole and Jessica Rich and ​is doing everything it can to support them in this journey. This not only affects those two beautiful children; it also affects their family in a huge way, and the whole community.

    For that reason, I beg the Minister today to recognise that this is not only about reaching the right decision, but about doing it with urgency. Every day, there is an impact on their deteriorating health, and there is also the impact on the parents of supporting those children with a debilitating condition and living with the agony of not knowing what future lies ahead—whether the medicine that will save their children’s lives will be funded or not.

    Mr Rees-Mogg

    I so agree with the hon. Lady. I am of course primarily talking about Max, my constituent, but to take the drug away from children who are already getting it would be unconscionable. I simply do not believe that any reasonable person—any politician or any administrator—would think that the right thing to do. It is bad enough not to give the drug to a child who could benefit; to withdraw it would be so utterly wrong that I cannot believe that that could happen.

    When something can be done, it is hard for it not to be done and for us to allow it not to be done. It is frustrating that it is so hard to change and that there seems to be nobody who can decide it. Everyone one talks to says it is not up to them. NICE is bound by its guidelines, NHS England is bound by NICE, and the Secretary of State is bound by the legal interpretation of what the Health and Social Care Act 2012 provides, but none of that is good enough. We need action. Ultimately, it is Ministers, through Parliament, who are able to act.

    Let me finish with what Max’s father, Simon Sewart, who has been doing so much to look after his son, wrote:

    “I have always understood that life is no fairy tale with a happy ending, but when you learn that your beautiful child has a disease, as horrific as Batten Disease, your world changes forever and your heart is broken.

    NICE announced, just 24 hours after Max’s diagnosis, that the first ever treatment for CLN2 Batten Disease will not be funded.

    At a time when you should be taking care of your child, your other children, and enjoying precious time together as a family, you instead find yourself spending all of your time writing emails and letters, speaking to journalists and TV news programmes, communicating with your MP and with doctors in other countries where the ERT is available.

    Expending all of your energy in fighting the extraordinary decision by NICE and NHSE. And all the time, you see your child decline, day by day. And all the time, you just want to expend your energy on them, on holding them, on playing with them, on laughing and smiling with them, on running with them, on walking with them, on talking with them, on looking around at the world with them; on all these things. With them.

    This double-whammy is almost too much to bear. Reverse your decision NICE and let my family be.”

    Is that not what we all want for Max and his family? He has this terrible disease. It is not a disease that he can ever be cured of, but if he gets this treatment, he could have a higher-quality life and his family would be peacefully with him, enjoying his company for the years that remain to him. Please can the Minister do something about this?​