Category: Health

  • Steve Barclay – 2023 Statement on the Countess of Chester Hospital Inquiry

    Steve Barclay – 2023 Statement on the Countess of Chester Hospital Inquiry

    The statement made by Steve Barclay, the Secretary of State for Health and Social Care, in the House of Commons on 4 September 2023.

    With permission, Mr Speaker, I would like to make a statement on the inquiry into the circumstances surrounding the crimes of Lucy Letby.

    On 18 August, as the whole House is aware, Letby was convicted of the murder of seven babies and the attempted murder of six others. She committed these crimes while working as a neonatal nurse at the Countess of Chester Hospital between June 2015 and June 2016. As Mr Justice Goss said as he sentenced her to 14 whole life orders, this was a

    “cruel, calculated and cynical campaign of child murder”

    and a

    “gross breach of the trust all citizens place in those who work in the medical and caring professions.”

    I think the whole House will agree it is right that she spends the rest of her life behind bars.

    I cannot begin to imagine the hurt and suffering that these families went through, and I know from my conversations with them last week that the trial brought these emotions back to the surface. Concerningly, that was exacerbated by the fact the families discovered new information about events concerning their children during the course of the trial.

    Losing a child is the greatest sorrow any parent can experience. I am sure the victims’ families have been in the thoughts and prayers of Members across the House, as they have been in mine. We have a duty to get them the answers they deserve, to hold people to account and to make sure lessons are learned. That is why, on the day of conviction, I ordered an independent inquiry into events at the Countess of Chester Hospital, making it clear that the victims’ families would shape it.

    I arranged with police liaison officers to meet the families at the earliest possible opportunity to discuss with them the options for the form the inquiry should take, and it was clear that their wishes are for a statutory inquiry with the power to compel witnesses to give evidence under oath. That is why I am confirming this to the House today.

    The inquiry will examine the case’s wider circumstances, including the trust’s response to clinicians who raised the alarm and the conduct of the wider NHS and its regulators. I can confirm to the House that Lady Justice Thirlwall will lead the inquiry. She is one of the country’s most senior judges. She currently sits in the Court of Appeal, and she had many years of experience as a senior judge and a senior barrister before that. Before making this statement, I informed the victims’ families of her appointment, which was made following conversations with the Lord Chief Justice, the Lord Chancellor and the Attorney General.

    I have raised with Lady Justice Thirlwall the fact that the families should work with her to shape the terms of reference. We hope to finalise those in the next couple of weeks, so that the inquiry can start the consultation as soon as possible. I have also discussed with Lady Justice Thirlwall the families’ desire for the inquiry to take place in phases, so that it provides answers to vital questions as soon as possible. I will update the House when the terms of reference are agreed and will continue to engage with the families.

    Today, I would also like to update the House on actions that have already been taken to improve patient safety and identify warning signs more quickly, as well as action that is already under way to strengthen that further. First, in 2018, NHS England appointed Dr Aidan Fowler as the first national director of patient safety. He worked with the NHS to publish its first patient safety strategy in 2019, creating several national programmes. Those included requiring NHS organisations to employ dedicated patient safety specialists, ensuring that all staff receive robust patient safety training and using data to quickly recognise risks to patient safety. Last summer, to enhance patient safety further, I appointed Dr Henrietta Hughes, a practising GP, as England’s first patient safety commissioner for medicines and medical devices. Dr Hughes brings leaders together to amplify patients’ concerns throughout the health system.

    Secondly, in 2019, the NHS began introducing medical examiners across England and Wales to independently scrutinise deaths not investigated by a coroner. Those senior doctors also reach out to bereaved families and find out whether they have any concerns. All acute trusts have appointed medical examiners who now scrutinise hospital deaths and raise any concerns they have with the appropriate authorities.

    Thirdly, in 2016, the NHS introduced freedom to speak up guardians, to assist staff who want to speak up about their concerns. More than 900 local guardians now cover every NHS trust. Fourthly, in 2018, Tom Kark KC was commissioned to make recommendations on the fit and proper person test for NHS board members. NHS England incorporated his review findings into the fit and proper person test framework published last month. It introduced additional background checks, the consistent collection of directors’ data and a standardised reference system, thus preventing board members unfit to lead from moving between organisations.

    Finally, turning to maternity care, in 2018 NHS England launched the maternity safety support programme to ensure that underperforming trusts receive assistance before serious issues arise. Also since 2018, the Government have funded the national perinatal mortality review tool, which supports trusts and parents to understand why a baby has died and whether any lessons can be learned to save lives in the future. Furthermore, the Government introduced the maternity investigations programme, through the Health Safety Investigation Branch, which investigates maternity safety incidents and provides reports to trusts and families. In 2020, NHS England’s Getting It Right First Time programme was expanded to cover neonatal services. It reviewed England’s neonatal services using detailed data and gave trusts individual improvement plans, which they are working towards. Indeed, Professor Tim Briggs, who leads that programme, has confirmed that all neonatal units have been reviewed by his programme since 2021.

    Let me now turn to our forward-facing work. We have already committed to moving medical examiners to a statutory basis and will table secondary legislation on that shortly. It will ensure that deaths not reviewed by a coroner are investigated in all medical settings, in particular extending coverage in primary care, and will enter into force in April.

    Secondly, on the Kark review, at the time the NHS actively considered Kark’s recommendation 5 on disbarring senior managers and took the view that introducing the wider changes he recommended in his review mitigated the need to accept that specific recommendation on disbarring. The point was considered further by the Messenger review.

    In the light of evidence from Chester and ongoing variation in performance across trusts, I have asked NHS England to work with my Department to revisit this. It will do so alongside the actions recommended by General Sir Gordon Messenger’s review of leadership, on which the Government have already accepted all seven recommendations from the report dated June last year. This will ensure that the right standards, support and training are in place for the public to have confidence that NHS boards have the skills and experience needed to provide safe, quality care.

    Thirdly, by January all trusts will have adopted a strengthened freedom to speak up policy. The national model policy will bring consistency to freedom to speak up across organisations providing NHS services, supporting staff to feel more confident to speak up and raise any concerns. I have asked NHS England to review the guidance that permits board members to be freedom to speak up guardians, to ensure that those roles provide independent challenge to boards.

    Fourthly, the Getting it Right First Time programme team will launch a centralised and regularly updated dataset to monitor the safety and quality of national neonatal services.

    Finally, we are exploring introducing Martha’s rule to the UK. Martha’s rule would be similar to Queensland’s system, called Ryan’s rule. It is a three-step process that allows patients or their families to request a clinical review of their case from a doctor or nurse if their condition is deteriorating or not improving as expected. Ryan’s rule has saved lives in Queensland, and I have asked my Department and the NHS to look into whether similar measures could improve patient safety here in the UK.

    Mr Speaker, I want to take the first opportunity on the return of the House to provide an update on the Essex statutory inquiry. In June, I told the House that the inquiry into NHS mental health in-patient facilities across Essex would move forward on a statutory footing. Today, I can announce that Baroness Lampard, who led the Department of Health’s inquiry into the crimes of Jimmy Savile, has agreed to chair the statutory inquiry. I know that Baroness Kate Lampard will wish to engage with Members of the House and the families impacted, and following their input I will update the House on the terms of reference at the earliest opportunity.

    The crimes of Lucy Letby were some of the very worst the United Kingdom has witnessed. I know that nothing can come close to righting the wrongs of the past, but I hope that Lady Justice Thirlwall’s inquiry will go at least some way towards giving the victims’ families the answers they deserve. My Department and I are committed to putting in place robust safeguards to protect patient safety and to making sure that the lessons from this horrendous case are fully learned. I commend this statement to the House.

  • Steve Barclay – 2023 Statement on the Autumn Booster Programme

    Steve Barclay – 2023 Statement on the Autumn Booster Programme

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

    I have now accepted the advice from the Joint Committee on Vaccination and Immunisation on eligibility for the 2023 autumn booster programme, to protect those most vulnerable from Covid.

    NHS England will confirm details on how and when eligible people can access the autumn booster vaccine shortly, and I would urge anyone invited – including those yet to have their first jab – to come forward as soon as possible.

  • Steve Barclay – 2023 Speech at the NHS Confed Expo

    Steve Barclay – 2023 Speech at the NHS Confed Expo

    The speech made by Steve Barclay, the Secretary of State for Health and Social Care, on 15 June 2023.

    Thank you, Matthew [Taylor] – it’s great to be with you today.

    Tuesday’s incident in Nottingham has shocked us all.

    I am sure everyone’s thoughts have been with the families of those who have lost their lives so tragically and all who have been affected.

    And I wanted to take this opportunity to thank in particular everyone in the NHS who responded from the ambulance crews and paramedics – to the staff at the Queen’s Medical Centre.

    I also recognise that this week brings additional challenges to many in the room due to the industrial action and I acknowledge that this creates additional pressures for you and your teams.

    Many people will be working particularly hard to ensure the impact on patients is mitigated as far as possible.

    And I know this work comes after an incredibly challenging period.

    While the World Health Organisation has announced that the Covid-19 pandemic is officially over, its after effects are still very much being felt – including the scale of delays it has caused for patients waiting for treatment and the pressures on staff.

    Thank you to everyone – across the whole health and care system – for the way you’re rising to meet these challenges.

    My motivation as Secretary of State is clear: to enable people to access the right care faster.

    Because when for example I think of cancer treatment, I am thinking of the constituent in her 20s with a young daughter who was told not to worry about her symptoms, only to later find that the cancer had spread.

    I challenge myself as to what more I can do in this job to get the right treatment to people like her as fast as possible.

    That challenge sits at the heart of our three recovery plans.

    And whether it’s electives, UEC or primary care, patients are – rightly – demanding improvements.

    They also want to see care that is better joined up.

    And with our Integrated Care Systems now taking proper statutory form, we are moving in the right direction.

    Last August, I visited the Jean Bishop Integrated Care Centre in Hull which is one of a number of fantastic examples of how health and social care can come together under one roof.

    NHS staff, care workers and volunteers are working to care for local people, including keeping thousands of frail and elderly patients out of hospital and helping them live at home with the independence and dignity they deserve.

    And with ICSs now fully operational, we can make this type of approach more commonplace across the country.

    Despite the difficulties we face, there are signs of progress.

    On electives we’ve virtually eliminated waits of over 2 years, and we’ve reduced 18 month waits by over 90%,

    But we know the overall number remains high.

    This has a material impact, like, for example, for the self-employed worker who is waiting for their operation before they return to work.

    This is why we are taking further action to expand patient choice and making information on patient choice much more transparent.

    On urgent and emergency care, ambulance handover delays have improved.

    But again we know it has been particularly difficult in the past few days.

    In primary care, more appointments are being delivered by GPs and the wider clinical team, with on average an extra 20 per practice per day.

    But demand remains high.

    I recognise many in this room will have played a direct part in bringing these additional services to patients.

    Alongside these plans, I know other important work continues apace.

    You will have heard yesterday from Amanda about the improvements in cancer, including the doubling of cancer checks.

    In the 21st century, with the technology at our disposal, we can go further.

    Thanks to your hard work, we’re already moving in the right direction.

    Take lung cancer as one example.

    Through our screening programme, we are now seeing more diagnoses at stage one and stage two in the most deprived communities.

    This is a positive step and a practical example of how we are addressing health inequalities.

    We’ve also made particular progress in areas like breast cancer and research this week shows that most women diagnosed in England will beat the disease.

    Now we must build on this, by getting people potentially life-saving tests, checks, and scans more quickly and bringing those checks closer to people.

    Community Diagnostics Centres are an example of this.

    There are now 108 in operation, and they’ve delivered more than 4 million tests, checks and scans and they will help us build on these hard-won gains in the years to come.

    Now, I don’t think there’s anything original about a Secretary of State being fixated on tech.

    But for me, this isn’t tech for tech’s sake.

    It is the way to get care to people quicker – and do so at scale.

    Take for example, the way we’re expanding the NHS App. Contrary to what you may have heard from one speaker yesterday, over 2.4 million repeat prescriptions were ordered in April alone.

    Alongside a quarter of a million primary care appointments that were booked on the app, with numbers increasing rapidly.

    Tech is also the way we can tackle the many frustrations that I hear from staff – and that I’m sure many of you in the room hear too.

    The reason I care about tech is simple: it improves outcomes and helps you do your jobs.

    And let me say this: when budgets are tight, tech is often the first thing to go.

    That is not my approach.

    I am protecting the tech budget – and those key investments that will help us in the long term.

    From ensuring every NHS Trust uses electronic patient records and investing more in bed management systems.

    To the significant investment we’re making in our new data platform.

    And digitising the front line – from speeding up staff logins to staff passporting.

    Because I am acutely aware that when it comes to tech it is often how we make the job of local teams easier that that really matters.

    Despite what you may have read, I believe strongly in devolving decision-making.

    Equally, I think this should sit alongside greater transparency.

    We need more devolved decision making to enable a place based approach with decisions taken closer to patient need.

    Equally there are areas of great innovation but we have a challenge in scaling that so it is widely adopted. And this challenge is reflected in too wide a variation in performance between similar areas.

    For me the opportunity is to devolve much more and to trust local decision makers. In return to expect more meaningful transparency.

    Let me give you a practical example of where I have applied this, even where it could be uncomfortable.

    I listened to those suggesting we publish the number of patients waiting for 12 hours or more from arrival in Emergency Departments.

    Together with NHS England colleagues, we acted on that and from April we started publishing that information.

    This is particularly relevant in the context of mental health patients, who we know are at greater risk of longer waits in A&E, and we’re taking targeted action to reduce that risk to reduce that risk to reduce that risk to reduce that risk.

    Including the roll out of mental health ambulances, mental health cafes and mental health crisis hubs.

    NHS leaders have been clear with me about what they want to see from government.

    Fewer targets and more trust in the system.

    As Matthew referenced, we published a new NHS mandate this morning which reflects this.

    For over a decade, governments have used the mandate to make asks of the system.

    Sometimes these asks have been excessive, with long documents with many pages full of tests and targets.

    I’m sure you won’t be alone if you’re sat there thinking: it doesn’t matter I don’t read it anyway.

    But what we’ve done this year is make it short and clear, setting out our priorities:

    Cutting waiting lists; the three recovery plans; tech; and workforce.

    It gives a clear direction and backs it up with the freedom and flexibility to deliver it.

    We know that change happens when people are trusted, have a common purpose and are free to innovate.

    It was something that Matthew highlighted yesterday as a lesson coming out of Covid. And it is something I very much agree with.

    Trusting ICSs with greater freedom from devolved decision-making alongside greater transparency was one of the reasons we commissioned the Hewitt Review. Thank you to all those who contributed to it.

    Before I wrap up, I just want to reflect that – as we sprint to address the present it would be easy to lose sight of foundations we can lay now to build hope for the future.

    Some – such as the Long-Term Workforce Plan – have been well debated by colleagues in this room.

    It offers significant opportunities not just to boost overall numbers, but to better use the full skills mix and deliver training and career progression in completely different ways.

    And there are other opportunities – such as the rapid developments in AI – that are exciting and fast-moving and generating much interest.

    One example of the work we’re doing with AI in the department is how we can use AI to improve patient safety in maternity services.

    And we’re also working closely with the life science industry to enable both population-level treatments and more bespoke and targeted medicine.

    And this is reflected in our recent deals agreed with Moderna and BioNTech, Lord O’Shaughnessy’s review to speed up and expand the adoption of clinical research trials we launched last month.

    And indeed the Chancellor’s citing of Life Sciences as one of his key growth sectors.

    The NHS has changed massively over the last 75 years, all while remaining true to its founding principles.

    Covid showed that we can deliver change very rapidly when it matters and that trust in local systems to make decisions allows them the freedom to better adopt innovation.

    It is the culture of innovation which gives us a strong foundation for the next 75 years.

    In closing, I want to reinforce my message today on the importance of trusting integrated care systems more.

    What that means for you is:

    • Greater freedom
    • Fewer targets from the centre
    • More meaningful transparency on performance

    That is the approach I am taking as we work with you on our shared challenge of making it easier for patients to access the care they need.

    Thank you.

  • Steve Barclay – 2023 Speech to the Association of the British Pharmaceutical Industry Annual Conference

    Steve Barclay – 2023 Speech to the Association of the British Pharmaceutical Industry Annual Conference

    The speech made by Steve Barclay, the Secretary of State for Health and Social Care, to the Association of the British Pharmaceutical Industry annual conference held on 27 April 2023.

    Well thank you, Richard [Torbett] – good afternoon, it’s great to be able to join you.

    As you’ve just been touching on some of my past roles, it’s over five years since I was last in the Department of Health working then as a Minister of State.

    And in those five years, we’ve seen game-changing breakthroughs in science and technology.

    We’ve seen a once-in-a-generation pandemic.

    We’ve seen Britain depart, as you’ve just mentioned, from the European Union.

    And we’ve also seen the full consequences of the pandemic itself.

    And those factors have come together to shape a landscape that is very different today, than it was five years ago in 2018.

    The application of AI into almost every aspect of our lives might be receiving lots of attention today, particularly with things such as ChatGPT.

    But the potential of AI in life science is something we in this room have long been alive to, from detecting cancers to scanning potential transplant organs.

    Equally, pharmaceutical breakthroughs and their rapid deployment through the NHS have been turning the tide on diseases like HIV and Hep-C, and helping to bring us to a point where we can realistically talk about elimination – something which 10 years ago would have been unimaginable.

    Next, the pandemic has ushered in some powerful new ways of working. The Vaccines Taskforce brought many of us in government to working very closely with industry and academia in ways that we had not done before.

    And in its simplest terms we learned a lot about how to make things happen at pace.

    And it offers much promise for breakthroughs in some other areas dealing with health challenges that we face in the months and years ahead.

    And the third big shift is that the UK left the European Union, just as the pandemic began to take hold across Europe.

    And as Brexit Secretary leading our exit at that time, I recognised that in taking control of our rules and regulations we have a chance to show global leadership in important areas including life science.

    Now, with your help and support, we are doing just that. Building a more bespoke regulatory system that’s ready for the innovations of today but is also building the agility to respond quickly to the innovations of tomorrow.

    Now the question we’ve been trying to answer today, in the sessions I’ve been hearing that you’ve been having is how do we seize those opportunities?

    And I know you heard from some of my colleagues, from June Raine and Ros Campion earlier, on ‘How we build on the UK’s global strengths’. And we’ve heard about the Medicine and Healthcare products Regulatory Agency’s (MHRA) laser-like focus on ‘process, partnerships and people’.

    And this afternoon, I want to add some of my own thoughts on how we seize the opportunities that are in front of us.

    The first way is with an unashamedly pro-innovation approach to regulation.

    Now the theme of today’s conference is ‘Growing the UK as a Global Hub for Life Sciences’ and we have the largest life sciences sector in Europe.

    And the benefits of that to the UK economy are vast, not just from the jobs created, but from the transformative change it offers for the NHS. A key priority is to ensure that great science is then fast-tracked into the very bloodstream of our NHS.

    And that is why in the Budget, we announced an extra £10 million of funding for MHRA, so they can put in place a quicker, simpler, regulatory process for all approvals for innovative treatments, without compromising, in any way, patient safety. And that is building on the ever-closer working relationship that the MHRA and NICE have developed through the ILAP pathway.

    Now we aim to develop the most effective regulatory approvals process of anywhere in the world. And we are fortunate to have the MHRA – one of the most respected drug regulators globally – and, of course, the first to license a vaccine for Covid.

    From next year, the MHRA will set up a swift new approval process for the most cutting-edge medicines and devices to grow the UK’s role as a global hub for their development. And at the same time, from next year, they will allow the near-automatic sign-off for medicines and technologies already approved by trusted regulators in other parts of the world such as the United States, Europe, and Japan.

    And the real value is that near-automatic recognition of other regulators in some areas, such as license extensions, will in turn free up valuable regulatory resource to focus on other cutting-edge areas, like AI in medical devices.

    And this kind of smart regulation – made possible by the greater agility brought by our Brexit freedoms – meets our twin goals: Growing the UK as a global life sciences hub, while ensuring patients in the NHS have access to some of the most innovative medicines and treatments that can be found anywhere in the world.

    Now many of you will be aware that this coming change was an interim recommendation from the report into Life Sciences regulations, which is going to be published next month. And I want to put on record, Richard, my thanks to everyone who played their part in that important piece of work.

    Not least the ABPI, who have been so keenly engaged, including how you worked with the independent champions.

    I’m looking forward to hearing further recommendations and the benefits they can bring to the sector and patients alike.

    Now today, I also want to briefly comment on VPAS. The government and the pharmaceutical industry came together to negotiate a voluntary agreement, which has endured for many decades and created a stable basis for investment, access, and uptake. And it has done so while saving the NHS billions of pounds – which in turn has been reinvested into patient care.

    The negotiations for a successor agreement will begin soon and I very much welcome the appointment of Sir Hugh Taylor, who brings vast experience in this area, and I hope assures Richard, colleagues, as to the seriousness with which we are taking these negotiations.

    And you heard a little earlier from the Prime Minister, which I hope further underscores our desire to deliver a successor to VPAS – which needs to be a deal that is good for patients, good for the NHS, and good for you too.

    The core value that sits at the heart of all of this – whether it’s innovative regulation or VPAS – is that the government is a committed partner.

    And we are guided by our Life Sciences Vision, which sets out our ten-year plan for the sector, including seven missions for all of us – government, industry, the NHS, academia, medical research charities and others – to solve together.

    And together, our work on everything from cancer to dementia, cardiovascular disease to mental health will not only support the NHS but it will help the wider economy by improving productivity and life expectancy.

    Now we’ve already been putting this into practice.

    In January we signed a memorandum of understanding with BioNTech to bring innovative vaccine technology to this country, with the potential to transform outcomes for cancer patients. The partnership means that, from as early as this September our patients will be amongst the first to participate in trials and tests to provide targeted, personalised and precision treatments. And that will use transformative new therapies to both treat existing cancers – and to help stop them from returning.

    That deal builds on the 10-year partnership we struck with Moderna in December to invest in the mRNA research and development in the UK and establish a state-of-the-art vaccine manufacturing centre here.

    We want to partner with those who share our commitment to scientific advancement, innovation, and cutting-edge technology.

    We’re the third biggest investor of government funding into health R&D as a proportion of GDP in the world and we’re upholding our promise to increase research and development spending to £20 billion a year. And that is at a time when there are many competing challenges for the Chancellor to meet.

    It’s not just something I’m proud of for its own sake, but something I’m determined we use to its full potential, so we can transform people’s lives and opportunities both here and abroad.

    And if there’s one message I want you to take from my speech today it’s this: we need companies – including a great many represented by you in this room today – to invest in UK clinical trials.

    I know there are challenges, and we are listening, not least on how we can support those consultant clinical academics who drive medical breakthroughs.

    It is why we have commissioned James O’Shaughnessy to conduct an independent review of the UK commercial clinical trials landscape.

    And James has been kind enough to share some of his early findings and we will formally respond in the coming weeks.

    And I know you’ve also heard from June Raine earlier about the MHRA’s work to simplify requirements and remove barriers.

    There’s a lot of potential around clinical research and the changes ahead can bring a huge number of wins.

    Wins for patients – who will get access to the latest innovative medicines that will become the Standard of Care in years to come.

    Wins for the NHS – not just to boost to their income, but also because we know that hospitals that are active in research have better outcomes.

    And wins for industry – who can work with a single NHS – from leading institutions and hospitals to primary care.

    Because, with its unrivalled scale, breadth and potential, the NHS should be the research partner like no other on Earth. But I recognise that, for those of you in the room, that has too often not been the case.

    Notwithstanding the need for change, clinical research in the NHS has already been responsible for some of the UK’s biggest successes – like the RECOVERY trial. And since Covid, public engagement in health research is at an all-time high.

    But I want that to go further – so we’ll build in a clinical research environment that is people-centred, that is digitally enabled, and all embedded within the NHS.

    And you can see that coming to life through initiatives like the NIHR’s ‘Be Part of Research’ which makes it even easier for people in England to find and register their interest in suitable research opportunities – including through the NHS App that we are developing at pace.

    Seizing these opportunities on clinical trials will not only leave patients and the NHS stronger but give us a much more joined up life sciences sector and a more dynamic economy too.

    So, we have a coming together of giant technological leaps:

    Innovative new ways of working from the pandemic.

    A post-Brexit regulatory environment that offers the agility to design a more bespoke and effective environment.

    And a new way forward for clinical trials through implementing the James O’Shaughnessy review.

    Taken together, it means the UK is well-placed to seize these opportunities – working in partnership with the talent we have within the Department of Health and its arm’s length bodies, with our fantastic NHS – including frontline medical staff, and in partnership with you on behalf of the industries that you represent.

    I look forward to working with you Richard, to colleagues in the room, to achieve that shared common goal. Thank you very much.

  • Steve Barclay – 2023 Statement on NHS Strikes

    Steve Barclay – 2023 Statement on NHS Strikes

    The statement made by Steve Barclay, the Secretary of State for Health and Social Care, in the House of Commons on 17 April 2023.

    I am grateful to the hon. Gentleman for his question. On its first part, we will not have firm figures on the number of patient appointments postponed until later today, because the NHS guidance has been to allow trusts a full working day to collate the data on those impacts. We do know from the previous three-day strike that 175,000 hospital appointments were disrupted and 28,000 staff were off. There is an initial estimate that 285,000 appointments and procedures would be rescheduled, but it is premature to set out the full impact of the junior doctors’ strike before we have that data. I am happy to commit to providing an update for the House in a written statement tomorrow. In the coming days, I will also update the House on the very significant progress that has been made on the successful action taken over recent months to clear significant numbers of 78-week waits, which resulted from the covid pandemic.

    It is regrettable that the British Medical Association junior doctors committee chose the period immediately after Easter in order to cause maximum disruption, extending its strike to 96 hours and asking its members not to inform hospitals as to whether they intended to strike, thus making contingency planning much more difficult. Let me put on record my huge thanks to all those NHS staff, including nurses and consultants, who stepped up to provide cover for patients last week.

    I recognise that there are significant pressures on junior doctors, both from the period of the pandemic and from dealing with the backlogs that that has caused. I do want to see a deal that increases junior doctors’ pay and fixes many of the non-pay frustrations that they articulate. But the junior doctors committee co-chairs have still not indicated that they will move substantially from their 35% pay demand, which is not affordable and indeed is not supported by those on the Opposition Front Bench.

    Let me turn to the second part of the hon. Gentleman’s question and the steps we are taking to prevent further strike action in the NHS. We have negotiated a deal with the NHS Staff Council; it is an offer we arrived at together, through constructive and meaningful negotiations. It is one on which people are still voting, with a decision of the NHS Staff Council due on 2 May. The largest union, Unison, has voted in favour of it, by a margin of 74% in favour. So we have agreed a process with the trade unions, which I am keen to respect, and we should now allow the other trade unions to complete their ballot, ahead of that NHS Staff Council meeting on 2 May.

    Wes Streeting

    Thank you, Mr Speaker, for granting this urgent question.

    Finally, the invisible man appears; the Secretary of State was largely absent last week during the most disruptive strikes in NHS history. He was almost as invisible as the Prime Minister, who previously said he does not want to “get in the middle” of these disputes—what an abdication of leadership during a national crisis. An estimated 350,000 patients had appointments and operations cancelled last week—that is in addition to the hundreds of thousands already affected by previous rounds of action. Having failed to prevent nurses and ambulance workers from striking, the Government are repeating the same mistakes all over again by refusing talks with junior doctors. Patients cannot afford to lose more days to strikes. The NHS cannot afford more days lost to strike. Staff cannot afford more days lost to strikes. Is it not time for the Secretary of State to swallow his pride, admit that he has failed and bring in ACAS to mediate an end to the junior doctors’ strike?

    Last week also saw the Royal College of Nursing announce new strike dates with no derogations and a new ballot. What does the Secretary of State plan to do to avert the evident risks to patient safety? Government sources briefed yesterday that they are prepared to “tough it out”. That is easy for them to say. Will the Secretary of State look cancer patients in the eye, while they wait for life-saving treatment, and tell them to tough it out, as they are the ones who will pay the price for his failed approach?

    Finally, writing in The Sun on Sunday, the Secretary of State said that he is worried about patient safety, but he offered no plan to get this matter resolved. He is not a commentator; he is nominally the Secretary of State for Health and Social Care with the power and responsibility to put an end to these strikes. When will he put his toys back in the pram, stop blaming NHS staff, sit down with junior doctors and negotiate a fair resolution to this terrible, damaging and unprecedented dispute?

    Steve Barclay

    The shadow Secretary of State seems to ignore the fact that we have negotiated a deal with the NHS Staff Council, and it is a deal that it has recommended to its members. Indeed, the largest health union has voted in favour of the deal—indeed it is his own health union that has voted in favour of it—and yet he seems to suggest that we should tear it up even though other trade unions are voting on the offer, and their leadership had recommended it.

    Secondly, the shadow Secretary of State says that we should sit down and negotiate. We have made an offer of 10.75% for last year, compared with the Labour Government in Wales, who have offered just 7.75%, which means that, in cash terms, the offer in England is higher than that put on the table by the Welsh Government, whom, I presume, he supports. He says that he does not support the junior doctors in their ask of 35%, and neither does the leadership there. We need to see meaningful movement from the junior doctors, but I recognise that they have been under significant pay and workforce pressures, which is why we want to sit down with them.

    The bottom line is that the deal on the table is reasonable and fair. It means that just over £5,000 across last year and this year will be paid for a nurse at the top of band 5. The RCN recommended the deal to its members, but the deal was rejected by just under a third of its overall membership. It is hugely disappointing that the RCN has chosen not to wait for the other trade unions to complete their ballot and not to wait for the NHS Staff Council, of which it is a member, to meet to give its view on the deal. It has chosen to pre-empt all that not only with the strikes that come before that decision of the NHS Staff Council, but by removing the derogations—the exemptions—that apply to key care, including emergency care, which is a risk to patient safety.

    Trade unions are continuing to vote on the deal. The deal on the table is both fair and reasonable, including just over £5,000 across last year and this year for nurses at the top of band 5. The deal has been accepted by the largest union in the NHS, including, as I have said, the shadow Health Secretary’s own trade union. It pays more in cash to Agenda for Change members than the deal on the table from the Labour Government in Wales. It is a deal that the majority of the NHS Staff Council, including the RCN’s own leadership, recommended to its members. We have always worked in good faith to end the disruption that these strikes have caused and we will continue to do so. None the less, it is right to respect the agreement that we have reached with the NHS Staff Council and to await its decision, which is due in the coming weeks.

  • Steve Barclay – 2023 Letter to General Secretary of the Royal College of Nursing

    Steve Barclay – 2023 Letter to General Secretary of the Royal College of Nursing

    The letter sent by Steve Barclay, the Secretary of State for Health and Social Care, to the General Secretary of the Royal College of Nursing on 16 April 2023.

    Dear Pat,

    Thank you for your letter of 14 April.

    The offer that we arrived at together through negotiations in March, and which as the General Secretary of the Royal College of Nursing you recommended to your members, is a fair and reasonable settlement that acknowledges the dedication of NHS staff.

    It would mean that a nurse at the top of Band 5 would get over £5,000 in extra pay across last year and this year – including over £2,000 in bonus payments arriving as a lump sum in pay cheques by the summer.

    After you recommended the deal be accepted, I am disappointed that given the turnout, a rejection from less than half of your members was sufficient for a narrow rejection overall.

    This offer was of course negotiated with and put to all Agenda for Change trade unions. Unison’s members decisively accepted it on Friday, and other unions are yet to conclude their consultations. I hope that this fair and reasonable offer will secure their members’ support, and I will therefore await the collective outcome and extraordinary Staff Council meeting that will follow. As you know from when you and your colleagues negotiated this offer, the lump sum payments for 2022/23 are payable if the NHS Staff Council ratifies this offer.

    Given that you supported the offer we reached together, and that your ballot saw a very narrow result, I am also both disappointed and concerned that the Royal College of Nursing has chosen to announce 48 hours of continuous strike action without consultation of other Staff Council unions or waiting for the full Staff Council consultation to complete. The decision to refuse at this stage any exemptions for even the most urgent and life-threatening treatment during this action will, I fear, put patients at risk.

    We have so far worked together constructively, and I hope this can continue. The strike action you have called will cause significant disruption at a time when the NHS is already under extreme pressure. I urge you to reconsider your planned strike on 30 April – 2 May and, like the remainder of the Agenda for Change unions, wait until the collective outcome of the extraordinary Staff Council meeting.

    I would therefore welcome a meeting with you to discuss how we can avoid this escalatory action – recognising that the offer we negotiated with you and other unions stands, and I hope to see it implemented in the interests of all Agenda for Change staff once other consultations conclude.

    Yours ever,

    RT HON STEVE BARCLAY MP

  • Maria Caulfield – 2023 Speech on World Down Syndrome Day

    Maria Caulfield – 2023 Speech on World Down Syndrome Day

    The speech made by Maria Caulfield, the Parliamentary Under-Secretary of State for Health and Social Care, in the House of Commons on 23 March 2023.

    I thank my right hon. Friend the Member for North Somerset (Dr Fox) for securing the debate and for all his hard work over the years campaigning and supporting people with Down syndrome. I, too, attended the reception on the Terrace earlier this week. I met lots of people from around the country, some with Down syndrome, but with campaigners, supporters, friends and family. In particular, I pay tribute to the National Down Syndrome Policy Group and its founders, Ken and Rachael Ross, who are in the Public Gallery.

    I had the pleasure of meeting the advisory team this morning in No. 10, where we held a roundtable with young people with Down syndrome. They certainly put my feet to the fire with their questions and the progress they want to see. They have joined us this afternoon, too. Florence, Harshi, Ed, Max, Fionn, Tommy, Charlotte, James, Heidi and Rula asked extremely difficult questions, and I have promised to update them on progress. That just shows the strength of feeling and the range of support from people around the country.

    Selaine Saxby (North Devon) (Con)

    As we celebrate World Down Syndrome Day and the achievement of those who suffer with Down syndrome, will the Minister join me in congratulating my constituent Jade Kingdom, who is now a Guinness world record holder as the first person with Down syndrome to complete a sprint triathlon. She overcame her health conditions to achieve this and raised £30,000 for the North Devon Hospice.

    Maria Caulfield

    That is a fantastic achievement, and I congratulate Jade on her amazing ability. I wish I could do something similar.

    Tuesday marked the 12th World Down Syndrome Day. My right hon. Friend the Member for North Somerset was not able to join us on the day because he was at the UN in New York to showcase the work done in this Parliament. Many countries are now looking to us as they try to do something similar. He has not only changed the lives of people with Down syndrome in this country; he is making a difference globally, too.

    As part of the World Down Syndrome Day celebrations, I am wearing my different socks to showcase the three strands of chromosome 21, which apparently look like socks and are the cause of Down syndrome. The socks highlight Down syndrome and the amazing contribution that the incredible people with Down syndrome make to our communities and society.

    The hon. Member for Glasgow South West (Chris Stephens) spoke about his constituent Danielle, her son Steven and the very real issues of diagnostic overshadowing. My hon. Friend the Member for Stoke-on-Trent Central (Jo Gideon) spoke about her uncle Donald and how difficult it was for her family. She also spoke about what life was like in the past for people with Down syndrome.

    My hon. Friend the Member for Ashfield (Lee Anderson) spoke about Jossie, who I am sure has a wonderful future ahead of her. My hon. Friend the Member for Southend West (Anna Firth) spoke about David Stanley and the Music Man team, who cheer us up with their wonderful performances.

    My hon. Friend the Member for Hendon (Dr Offord) spoke about the dancing ability of his constituent Michael. He also spoke about Liam. I am a “Coronation Street” fan, and Liam is not currently at Roy’s Rolls, but I look forward to his next episodes because he has a good sense of humour.

    It is important to celebrate people with Down syndrome and to recognise the barriers they face. It was wonderful to see the actor James Martin win an Oscar for his brilliant performance, but we must not forget why we are here today.

    The Down Syndrome Act became law in April 2022, and I will now update the House on its progress. My right hon. Friend the Member for North Somerset and the Education Secretary, my right hon. Friend the Member for Chichester (Gillian Keegan), ensured the passage of the Act. We all have a responsibility to make sure it is not the end of the story by implementing the Act and getting the guidance out.

    At Downing Street this morning, the young people asked when we will see those changes. We will deliver guidance for professionals working in health, social care, education and housing, to try to bring together support for people with Down syndrome. The guidance will set out tangible, practical steps that organisations should take to meet the needs of people with Down syndrome. It will raise awareness of the specific needs of people with Down syndrome, and it will bring them together with the relevant authorities to make support more easily accessible.

    We launched our national call for evidence in July 2022, in the spirit of “With Us Not For Us,” and we heard from hundreds of people across the country. We had more than 1,000 responses on the needs and asks of the various communities. I thank everyone who responded or participated in the focus groups. It is thanks to them that we received so much evidence, which officials are now going through to analyse the data. We will shortly provide a summary of the key findings.

    It is essential that people’s lived experience informs the development of the guidance, and that people with Down syndrome are involved at every stage. We will shortly set up a working group to oversee the development of the guidance. Once drafted, the guidance will be subject to further public consultation to make sure we have it absolutely right.

    My right hon. Friend the Member for North Somerset asked some practical questions about the guidance, and we recognise that the issues and the services supporting people with Down syndrome sometimes overlap with the issues and the services supporting other people with learning disabilities and learning difficulties, which we need to consider. But I am absolutely clear that this guidance is about people with Down syndrome, because we want to help as many people as possible, to make it feasible for relevant authorities to implement this guidance in practice and to ensure that there will be oversight of it in Parliament.

    We are committed to considering the inclusion of employment and other public services through the call for evidence. We heard that best practice in supporting employment and benefits services is also going to be included in the guidance. We know that employment can have a significant benefit in terms of living independently and participating fully. That is why it is so important that the Minister for Disabled People, Health and Work, my hon. Friend the Member for Corby (Tom Pursglove), has sat through this afternoon’s debate. He was also at the reception earlier in the week, along with the Education Secretary. This is a cross-Government approach, and we cannot act just with one Department on its own. That shows that the full strength of the Government is behind these changes. We will also be looking at transport and leisure facilities, and removing some of the barriers to enable people with Down syndrome to be able to fully participate in the activities that they want to do. We will be working with other Departments to consider how to best incorporate those areas into the guidance.

    To ensure that the guidance is implemented in practice, every integrated care board will be required to have a named lead for Down syndrome. As my right hon. Friend the Member for North Somerset said, we want there to be a clear person accountable. The named lead will be responsible for ensuring that the Down Syndrome Act is implemented in practice. NHS England is currently developing its statutory guidance for ICBs, including for the Down syndrome lead role. Having a named lead for Down syndrome will help to ensure that the specific needs of people with Down syndrome are considered when services are designed and commissioned. One speaker this afternoon said that that would open the floodgates for change, but we absolutely need change to happen, so I do not necessarily have a problem with that. My right hon. Friend also touched on the school census. I wish to reassure him that although we have missed the deadline for 2023-24, we are looking at 2024-25 for this. We will be discussing that with the Education Secretary, because we recognise the importance of the school census and gathering that information.

    I thank everyone who has taken part in the debate. It has been a consensual debate and it shows Parliament at its best when we work together to deal with these challenges. I pay tribute to the families, carers, organisations and professionals who work tirelessly on behalf of people with Down syndrome, but I pay a particular tribute to those with Down syndrome themselves. It is indeed “With Us Not For Us”—I absolutely get that message. That is why we are here today. I also want to pay tribute to the officials at the Department of Health and Social Care—David Nuttall and his team—who have got that message loudly too and are working with the community to make sure that the Act and the guidance address their needs. Next year, I am sure that we will update the House further on the progress that has been made.

    Dr Fox

    With the leave of the House, may I thank all colleagues who have taken part in this debate? As the Minister just said, this is the House at its best, which almost certainly means, sadly, the media coverage at its least. As they say, “If you want a secret kept, say it in Parliament, outside Prime Minister’s questions.”

    A couple of points are worth reiterating. There are those concerned about people with similar conditions to Down syndrome being left aside, but I do not believe that to be true, because of the measures that were considered and the commitments given in Committee by the Government. Although, again, it is worth pointing out that people with Down syndrome share a number of characteristics with other groups, they are, none the less, a discrete population. I wish the hon. Member for Glasgow South West (Chris Stephens) well in his attempts to get Down syndrome included in the Scottish Government legislation, because there is a problem of genuinely unintended consequences. Leaving it out could result in legislative overshadowing and we may unintentionally leave the Down syndrome groups isolated in their legal rights.

    One thing that has come out loud and clear from this debate is the need for professional education, whether in health, education or social care. I worry about not only diagnostic overshadowing but social overshadowing, whereby the need for people to live, earn and be independent is hidden by a stigma, which is still all too prevalent and needs to be removed. We in the UK have taken a great lead on this issue, as was reflected at the United Nations on Tuesday. We should relish this challenge as a country. We talk about global Britain in a whole range of areas, including diplomacy and security, but should not one of the great challenges for global Britain be our setting an example on social care that the rest of the world wants to follow? That would be something to achieve.

    Question put and agreed to.

    Resolved,

    That this House has considered World Down Syndrome Day.

  • Liz Kendall – 2023 Speech on World Down Syndrome Day

    Liz Kendall – 2023 Speech on World Down Syndrome Day

    The speech made by Liz Kendall, the Labour MP for Leicester West, in the House of Commons on 23 March 2023.

    I echo other Members in congratulating the right hon. Member for North Somerset (Dr Fox) on securing this important debate. We all know what a passionate and—most importantly—effective campaigner he has been in supporting people with Down syndrome and their families. His Down Syndrome Act, which Opposition Members were proud to support, represents an important opportunity for us to make progress on delivering the support that people with Down syndrome deserve, so that they can lead as full and equal a life as everyone else.

    Let me say as an aside that I think what the right hon. Gentleman is trying to do has important implications for wider public sector reform. There are many issues and problems that people have talked about for years; the question is, how do we make change? The right hon. Gentleman’s mechanism in this instance is to use a specific Act providing for named individuals who are held accountable, and for guidance that actually secures change. However, there are other methods of securing changes in public services—for instance, through legal rights—and I am a strong champion of direct payments and personal budgets, which give people and their families the power to change those services. We need to focus on making a difference and putting the users of services and their families at the heart of the system, making them equal partners in care. We will never get healthcare, education and work support right unless we do it in partnership with people.

    I am a long-standing champion of the vision pioneered by the group Social Care Future, which consists of people who use services and their families: that we all want to live in the place we call home with the people and things we love, in communities where we look out for one another and where we can contribute, doing the things that matter the most to us—not what somebody else tells us we want to do or should do, but what we ourselves want to do. That is the vision that Opposition Members are championing. In the 21st century, and in what, despite all our problems, is still one of the richest countries in the world, it should not be seen as extraordinary, but the truth is, I am afraid, that for too many of the 47,000 people in the UK living with Down syndrome, it remains far from reality.

    Members have rightly spoken of the progress that has been made, but I think it is also important to use this debate to demonstrate how much further there is to go. The first issue I want to raise is that of health and health inequalities, to which many Members have referred. We know that people with Down syndrome are more likely to experience problems with their hearts, bowels, hearing and vision, and have an increased risk of infections. I think it disgraceful that so often the outcomes are so poor for people with Down syndrome because of what is known as diagnostic overshadowing, when symptoms are ignored and put down to Down syndrome rather than being diagnosed properly and addressed.

    There are two issues on which I think we should focus. The first is the need to ensure that children with Down syndrome have the regular check-ups they need with paediatricians and GPs. We know that too many families find those services too hard to access, and the current number of vacancies in the NHS—133,000—as well as all the other problems that people are experiencing when trying to see GPs and other doctors are having an impact on that. When she responds to the debate, will the Minister tell us when we will finally see the Government’s workforce plan for the NHS? May I also cheekily ask her once again whether she will adopt Labour’s plan to bring about the biggest expansion of the NHS workforce in its history, which we would pay for by scrapping the non-dom tax status? Members will understand that I want to put forward practical solutions today and to be realistic about the challenges, and that is what I intend to do.

    Dr Fox

    Does the hon. Lady accept that it is a question of not just the size of the workforce but their understanding of the problems? If in health, as in education and social care, the professionals are not aware of the difficulties faced by the population with Down syndrome, no number of extra professionals or services will make a real difference.

    Liz Kendall

    The right hon. Gentleman must have read the next line in my speech. Of course, it is not only an issue of staff shortages and vacancies. I think that the real issue, which the right hon. Gentleman mentioned earlier, is training. If people are not trained to understand an issue and to understand its manifestations, they will not be able to put it right. In some other areas, I have seen medical schools and universities pioneering new forms of training, in which those who have a condition and their families become part of the training module to explain what the implications are. I hope that the Minister will tell us what action the Government are taking in this regard, and whether the guidance that will be issued will involve changes within medical schools or for nurses and other healthcare professionals.

    The second area in which progress is needed is social care. It is, I believe, the biggest area in which the right support for people with Down syndrome is too often lacking. Whatever Conservative Members may say, I think it is important to understand the context in which the Down Syndrome Act will be working, and to take into account the difficult situation relating to social care. Just last week, research from the learning disability charity HfT revealed that nearly half the social care providers in England have been forced to close part of their organisations or hand back contracts to councils as a result of cost pressures in the last year. More than half a million people are awaiting a social care assessment, a review, or the start of a service or direct payment, and a survey conducted by the Down’s Syndrome Association found that 43% of family carers said their adult child was in need of an assessment, with some waiting as long as two years for that basic service.

    What all this means, of course, is that families tend to be left to pick up the slack, often having to leave their own jobs or reduce their hours because they cannot obtain the help that they need to look after their loved ones. The fact that there are 165,000 vacancies in the social care workforce is having an impact on the support that is available to families with Down syndrome. We need to address both the issue of the care workforce and wider reforms.

    Last week, the Health Service Journal reported that there are due to be cuts in the money announced for social care reform in the 2021 White Paper. A sum of £500 million was set aside to improve the training and career progression of the care workforce, but the Health Service Journal said that that is going to be cut by half. It also said that the £300 million to better integrate housing, health and care is set to be cut, with cuts to the budgets for unpaid carers and the use of technology.

    This is really important, because unless we join up services and support, people with Down syndrome will not be able to live the lives they choose. The issue of housing is critical. Just 28% of people with learning disabilities live in supported housing, yet we know that 70% of people with a learning disability want to change their current housing arrangements to give them greater independence. Will the Minister confirm whether those reports are true? Are the Government going to cut £250 million for improving the training of the social care workforce and £300 million from the budget to better integrate health, care and housing? [Interruption.] It is not a disrespectful question; it is a question that has a direct impact on the lives—

    The Parliamentary Under-Secretary of State for Health and Social Care (Maria Caulfield)

    I said it was disappointing.

    Liz Kendall

    It is not disappointing; it is my job to hold the Government to account. I would like the Minister to answer that question.

    The hon. Member for Southend West (Anna Firth) mentioned help to work, which I am passionate about. Work gives purpose, independence and dignity, but only 5.5% of adults with a learning disability in England were in paid employment as of 2020, yet 65% of people with learning disabilities say they want to go out and work. The hon. Member asked about what was happening in her constituency. I recently visited the Leicester Royal Infirmary, which is doing pioneering work with Ellesmere College, a college for students with special educational needs, to give them the skills and experience they need to get to work, with pioneering apprenticeships. I visited a young woman who was working in the hospital café. I asked her what she thought, and she said that her ambition now was to set up her own café and employ others. I think that shows that if people are given the chance and the support, real progress can be made.

    The Down Syndrome Act presents a real opportunity for change. It creates a duty on the Secretary of State to issue guidance to relevant authorities on how to meet the specific needs of people with Down syndrome. That will cover many of the issues I have outlined, and I hope the Minister will update us on when it will start to make an impact on the ground. I understand that the call for evidence on the Act closed in November. When will we see the Government’s response? We need to act quickly to make real progress to transform the lives of people with Down syndrome and ensure they can live the life they choose.

    I would argue that wider action is needed to support the NHS and social care so that we have the investment and reform we need to improve lives, but I hope the Minister will address in detail my questions about the reports. I understand that the Government will produce an update on social care, possibly next week. Will the Minister answer my question and say whether the funds the Government promised will be available?

  • Marion Fellows – 2023 Speech on World Down Syndrome Day

    Marion Fellows – 2023 Speech on World Down Syndrome Day

    The speech made by Marion Fellows, the SNP MP for Motherwell and Wishaw, in the House of Commons on 23 March 2023.

    May I congratulate the right hon. Member for North Somerset (Dr Fox)? Further into my speech I may disagree with him slightly—it will be a gentle disagreement—but I totally acknowledge his knowledge and his passion for people with Down’s syndrome. Unfortunately I was not able to make the reception on Wednesday, but I did manage to get my picture taken with the right hon. Member and tweet it out on World Down Syndrome Day; I think many of our constituents might have been quite surprised to see that.

    It is always a pleasure to speak in these Thursday afternoon debates, because they are generally consensual and we really learn a lot. As the SNP spokesperson on disabilities I was not entirely sure whether I would be the right person to sum up in this debate, but I think I probably am, because of the passion that the people around me are exhibiting this afternoon. I will probably throw away my prepared speech now and just crib bits and pieces.

    It is always a pleasure to follow Members such as my hon. Friend the Member for Glasgow South West (Chris Stephens). Everyone can be assured that he will assist his constituents to push the Scottish Government with their new Bill, because he is passionate about helping his constituents. The hon. Member for Stoke-on-Trent Central (Jo Gideon) spoke about her personal experience and about changing attitudes to Down’s syndrome and life expectancy. As one of the older people speaking today, I can vouch for that: when I was younger it was very difficult to see anyone with Down’s syndrome as we went about our daily living, but now things are very different right across the United Kingdom.

    The hon. Member for Ashfield (Lee Anderson) spoke about real people; there cannot be many of us who have not met a real person with Down’s syndrome. The hon. Member for Southend West (Anna Firth) talked about the Music Man project and about the theme for this year’s Down Syndrome Day, “With Us Not For Us”—a motto and an expectation that we should all think about when we are dealing with people with disabilities. The hon. Member for Hendon (Dr Offord) paid tribute to those who care. I am pretty sure that he, too, cares about lots of things, but I understand his reluctance to put himself out there as a carer.

    The right hon. Member for North Somerset wanted to know more about what is going on in other areas. Before I get on to that issue, I might just get over the point on which we might differ slightly. Like other Members, I get briefings from lots of organisations for many debates in this House. Genetic Alliance has written to me with its concerns about the guidance on the right hon. Member’s Act. It is worth just mentioning those concerns, which touch on the point that when Parliament passes a Bill there are often consequences that we do not see and a debate always opens up about what has not been included or what people think might have been included.

    Given that people with Down’s syndrome form friendships with people with other genetic conditions and meet them regularly, as they are accessing similar services, Genetic Alliance has concerns that perhaps more thought should be given to guidance for those with other conditions. However, I absolutely take on board what the right hon. Member and my hon. Friend the Member for Glasgow South West have said.

    Dr Fox

    I just want to clarify that the point of the Down Syndrome Act is not to exclude other conditions or other genetic conditions. It was specifically discussed on Second Reading and in Committee that where there is overlap, of course it makes sense to have common provision. However, Down syndrome is different: there is a bigger, defined population who have not just learning difficulty issues, but a whole range of very specific medical conditions that require specific remedies. As has regularly been pointed out, the life expectancy for someone with Down syndrome was 13 years when I was born, whereas it is now in the 60s. That is why it is important that we establish a beachhead for such conditions. Actually, I do not think we are in any disagreement whatever.

    Marion Fellows

    I am very relieved to hear that from the right hon. Gentleman, but I felt obliged to speak about the issue, because there are concerns. I would like the Minister to take on board those concerns from Genetic Alliance, because no one ever wants to pass a Bill that is seen as excluding or not actually helping other people—that is the main point of the briefing that I received today. As I say, I am very relieved not to be in dispute with the right hon. Member.

    I want to talk a wee bit about the Scottish Government’s position. As my hon. Friend the Member for Glasgow South West said, they are taking a wider view of Down’s syndrome in the Bill that they want to bring forward. One of the main differences in how the Scottish Government propose legislation is the way they look at the issues and consult very widely—there are many groups that they regularly consult on disabilities. They always use lived experience, which I think is the most important thing for people to take forward.

    The Scottish Government have also looked at a human rights-based approach. That ties in very well with this year’s World Down Syndrome Day theme, “With Us Not For Us”, because we need to look at human rights in their entirety, especially for people with Down’s syndrome and for people with conditions that are different but that have similar difficulties. That is why the Scottish Government have committed to incorporating in Scots law the UN convention on the rights of persons with disabilities—always within their legislative competence, hopefully. I think this Government should also think about including that in Bills. I think we are going to have difficulties with human rights discussions, shall I say, in this Parliament going forward; I hope we do not, but I think we all have to realise that everyone has human rights and they have to be adhered to. We should not, in any size, shape or form, be looking to remove any of them from any group of people at all.

    As has been said today, it is really important to remove as many barriers as we can for everyone, and especially for those who have Down’s syndrome. It is really important that we look at what people can do, not at what they are not able to do—or not able to do yet. It is refreshing, and important, that people with Down’s syndrome are involved in mainstream education. When I was a further education lecturer, I was involved with a college with many courses for young people who had left full-time education to continue learning. On that subject, there is a wonderful café in my constituency called Windmills. The preparations for it were first made in 2006 at a local school, Firpark high school. It has done great work over the years, and continues to do great work, in training young people with learning disabilities, including Down’s syndrome, and teaching them how to gain qualifications so that they can work in other areas, but especially in the café.

    Let me say in conclusion—because I am aware that I may be overrunning—that I find taking part in debates such as this interesting, educational and informative. I congratulate the right hon. Member for North Somerset on all that he does, and I am sure many people have benefited, and will benefit, from his Act.

  • Matthew Offord – 2023 Speech on World Down Syndrome Day

    Matthew Offord – 2023 Speech on World Down Syndrome Day

    The speech made by Matthew Offord, the Conservative MP for Hendon, in the House of Commons on 23 March 2023.

    It is a pleasure to speak in this debate and I am pleased to see colleagues here who have come with their own experiences. I congratulate my right hon. Friend the Member for North Somerset (Dr Fox) on securing the debate and I thank him for his work with his Bill.

    We discuss lots of issues in this Chamber, often prompted, lobbied for or orchestrated by individuals who have the loudest voices, including those who organise the petitions we debate in Westminster Hall, which have to have 100,000 signatures. Those people know how to work the system, so this afternoon it is good to take part in a debate prompted by those whose voices have been heard less frequently over the years. Those voices sometimes belong to less able-bodied people or, as in this case, those who have Down syndrome.

    My hon. Friend the Member for Stoke-on-Trent Central (Jo Gideon) spoke movingly about her own experiences; it was emotional for her to relate those experiences to us. She spoke about her father and his experience of having a brother who was left in care. There was a time when people with Down syndrome or other disabilities were always put into care. That was a terrible time and I am very pleased that we have now moved beyond that.

    My hon. Friend the Member for Ashfield (Lee Anderson) mentioned the caring role of parents who are able—or in some cases not able—to look after people who are suffering from these terrible conditions. We should pay tribute to them, especially those in the Public Gallery today. I have to admit that I could not undertake that role. I do not, unfortunately, have children, but I would find it very difficult to look after the day-to-day needs of anyone with any kind of disability. I will be honest and say that I could not do that. I pay tribute to my sister, who is undertaking a caring role at the minute. As I have explained to her, that is not something that I could do. Some people, like me, simply cannot do that.

    Several years ago, I went to visit Saira and Anthony Hettiarachchi, who run the Dillon care home in West Hendon. Both Saira and Anthony are friends of mine. Saira was a Conservative councillor and worked in the sector for many years, meaning she was able to take some of those skills to her work at the council, including in children’s services. During my visit, she introduced me to many of the people she looked after, perhaps because their parents were unable to do so or because Saira’s care home was able to provide better care for them. She introduced me to a boy with Down syndrome called Michael, who did not have great verbal or other communication skills but could dance; actually, he danced rather well. He was a bit more like a cat than I am. He could dance and he was able to express himself. I was quite amazed at the time that someone who I thought would not be able to undertake that physical exertion was able to do that.

    Later on, I saw Michael again, when I was at the St Joseph’s Pastoral Centre in Hendon. I saw not only Michael but other children with Down syndrome. They all seemed to communicate with each other, as they were winning awards, in their own special way. It was interesting to see because they were a group within the group and they were acting just like other children. There was no difference between them. It struck me that they were like anyone else, and had the same hopes and aspirations.

    I have visited the Larches community trust in Edgware on several occasions, as I mentioned in my maiden speech, which was established by Linda Edwards. On one visit to the centre, I was asked, as many of us often are, to say a few words without any notice. I thought, “I’m going to take a risk, on this occasion. I’m going to say what I think.” I know the Whips complain that I often not only say what I think but vote the way I think is appropriate, but on that occasion I thought I would take the chance, and it was worth it.

    I spoke about people with Down syndrome and I said how they were coming out of the darkness and into the mainstream. An example I raised was about a person called Liam Barstow, who many people will know better as Alex Warner, the character in the soap opera, “Coronation Street”. Liam was born with Down syndrome and was discovered by the producers of “Coronation Street” when they ran a workshop for actors with disabilities, called Breaking Through. They were so impressed with his abilities, they decided to create a role for him. One producer said, “It’s not some politically correct thing. We found there a really great actor with a wonderful sense of timing.”

    I do not really watch soap operas, but on the occasions that I have seen “Coronation Street” I have been quite amused by some of lines that Liam has. We all know Roy Cropper is a character in “Coronation Street” who runs the local café. I would not call him a ladies man, but there was an occasion when he had two female acquaintances who were friends. Liam delivered a wonderful line, asking Roy if he was a “playa”, which was a hilarious moment.

    There have been other examples of people with Down syndrome in popular culture. Other people have spoken about their experiences today, which is good, and this is a very serious issue, but we need to highlight other ways in which people with Down syndrome have made great contributions. I particularly like the film, “The Peanut Butter Falcon”. It is about a boy with Down syndrome who escapes from an assisted living facility and befriends a wayward fisherman on the run. The reason he escapes is that he wants to become a professional wrestler, which brings across to us that people with Down syndrome have hopes and aspirations, just like anyone else.

    Like the hon. Member for Strangford (Jim Shannon), I have to raise the film “An Irish Goodbye”, which I have watched twice. For those who have not seen it, it is set in a working farm in rural Northern Ireland and follows the reunion of estranged brothers Turlough, played by Seamus O’Hara, and Lorcan, played by James Martin, after the untimely death of their mother, hence the title of the film. Lorcan wants to continue working the land he grew up with, but Turlough decides he should go and live with their aunt on the other side of Ireland. To prevent that, Lorcan says he has a bucket list his mother wanted to complete and will only leave the farm if he and Turlough have completed every single wish on their mother’s list—all 100 of them. I suggest people watch the film because it is a wonderful example of an individual who has broken free from stereotypes to become a commanding actor.

    I highlight both productions because for many years people with disabilities, including those with Downs syndrome, have been written off and consigned to a lifetime on benefits. That is repugnant and I believe that both Liam and Jack have established themselves as actors.

    As the hon. Member for Strangford said, Jack used to be a barista, which he claims he would be quite happy to go back to, but I hope he continues to act. He has recently been filmed playing a harmonica in a bar, which shows he has a range of talents and interests. Maybe there should be a genre of films with leading characters with Down syndrome, but before I am criticised for singling people out, I would say viewers who watch these productions will experience empathy with these characters, get used to seeing their point of view and come away with an acceptance that they face additional hardships, but still have the same hopes and desires as everyone else. People with Down syndrome are not the others in society that they once were.

    I have often thought we could include more people in what we do in this place, and the debate today is a good example of that. We should ensure that people who suffer from Down syndrome are given the opportunities they deserve, and that they come into the mainstream and perform their best role in life.