Category: Health

  • Helen Whately – 2023 Speech at the NHS Confederation Conference

    Helen Whately – 2023 Speech at the NHS Confederation Conference

    The speech made by Helen Whately, the Health Minister, on 27 September 2023.

    Thank you, Layla [Dr Layla McCay] and thank you all for being here.

    I wanted to be here, even with this broken ankle, because the NHS Confederation is a very important organisation and it is a great opportunity to meet lots of you here today.

    But the topic of today’s conference – health beyond the hospital – to me, that is the clincher.

    It’s something I have been wanting to talk about since the Prime Minister appointed me. But I rarely get the chance, in public, because it’s not what most people ask me about.

    For instance, if I’ve got the joy of the notorious morning media round, notorious among ministers that is, I’ll likely be asked about acute hospital performance, A&E waits, and possibly discharge into social care, because of how that affects hospitals.

    It often feels like the acute hospital is like the sun in the NHS solar system with everything else spinning round it. But it doesn’t have to be that way, and I suspect many of you are here because you don’t believe it should be that way.

    I scarcely need to remind you of the context for this conversation. Firstly, the fact that more people are living longer with multiple health conditions. Over half of people over 55 have at least one long term condition, and that goes up to 80% of people aged over 80. And more people are living to a much greater age when they are also likely to be frail.

    There are a bit under 2 million people aged over 85. And over half of people over 85 are affected by frailty. In a couple of decades that number – people over 85 – will double.

    I don’t need to tell this audience about the challenges of an ageing population for our health system. But, as the Prime Minister said last week, governments must reckon with reality.

    This reality means we need to do healthcare differently, for the sake of individuals and for the sake of the system as a whole.

    We should start with what people want. If any of you have heard me speaking about hospital visiting, you will know that my mum has been pretty unwell this year. Even so, my mum doesn’t want to go in and out of hospital. In fact, she has to be practically dead before she agrees to going. She’s not alone in that.

    We probably all know someone who is, or has been, through this – bouncing in and out of hospital. We know that it is miserable.

    What most people want is to be able to stay at home, and have their healthcare on hand, from clinicians who understand them and what they need. Giving them control over what’s going on, and without being wheeled into an emergency department time after time.

    Then looking at our health system, we know our emergency departments are struggling with the number of people turning up. They’ve got really good at triage and developing new models like having GPs on site and same day emergency care. But it’s really hard to get care right in an emergency department for someone who’s frail with really complex care needs – and for those people, once they are in hospital, it can be so much harder for them to get home.

    Now here there is some good news: what people want and what would help our stretched acute hospitals is the same.

    Now I won’t be simplistic – ministers are always looking for the silver bullet, but I have been in this job long enough to know that there is no such thing. There is no one magic thing, but what there is, is a cluster of things that make a difference.

    Several of these were brought together in the Urgent and Emergency Care Recovery Plan, and are already well on their way to being offered in every area – like consistent urgent community response services, which do a great job of keeping people out of hospital when there’s a crisis.

    Like virtual wards, or hospitals at home, which mean people can get the hospital-level care they need in their own home, avoiding admission or allowing earlier discharge. Like the ‘Enhanced Health in Care Homes’ model.

    And scaling up intermediate care for patients following hospital discharge, to which end NHS England has just published the intermediate care framework. Among other things, this guides systems on demand and capacity planning to make sure that the amount of step-down care commissioned in each area will be enough to meet the needs of patients, particularly as demand increases during the winter months.

    But there’s a particular approach which I want to focus on today, which to me is the next big thing we have to do. That is to put in place really good, proactive, community-based, multidisciplinary, proactive, anticipatory care.

    Many of you will have heard of the Jean Bishop Centre in Hull, but for those of you who haven’t, I’ll give you a whistle-stop introduction.

    It’s named after, obviously, Jean Bishop. For 30 years Jean paced the streets of Hull, rattling her tin, and urging passers-by to donate to charity. She borrowed a stripy outfit from Age UK and quickly became known as Hull’s ‘bee lady’ – a local legend.

    She went out in all seasons – sunshine or rain, for anyone who knows Hull. This remarkable woman raised more than £125,000 for charity. She passed away 2 years ago, but her legacy lives on: Hull’s Jean Bishop Integrated Care Centre opened in 2018.

    Now people talk a lot about integrated care. This is it in action. The centre’s team includes geriatricians, advanced nurse practitioners, GPs, pharmacists, therapists and social workers, all under one roof.

    GPs across Hull identify patients at risk of severe frailty and refer them for a comprehensive assessment. They’ll see whoever they need to see in that multidisciplinary team. And they’ll get a tailored care plan shared with them, their GP and the hospital. A plan that reflects what they want – to help them manage their own care and stay healthy.

    The centre offers the same service to care home residents too. And it works. Between 2019 and 2022, for patients aged over 80, emergency hospital admissions fell by more than 13% and A&E attendance for patients in care homes fell by almost a fifth.

    And they are not the only ones doing this. For example, the ‘Age Well Team’ in Northamptonshire, with a proactive care model and a multi-disciplinary team, have seen a 5% drop in unplanned hospital admissions.

    Another example – one that means a lot to me because it’s just on my doorstep in Kent – is the proactive integrated care provided by the Estuary View practice in Whitstable, which was one of the vanguards that informed the inclusion of integrated community health services and expanded neighbourhood teams in the NHS Long Term Plan.

    I imagine those of you here today also have some great examples in your areas, which I’d like to learn about.

    So what now? Well, I meet with James Sanderson, who you heard from just before the break, every couple of weeks, and pretty much every time we meet, I ask him about this.

    Over the last few months, James and colleagues at NHS England – working with organisations like Age UK and the British Geriatrics Society, drawing from best practice across the country and the world – have been developing the proactive care framework, focused on frailty. Which will set out the combination of things that good proactive care involves – the effective use of data, holistic assessments, personalised care, multidisciplinary working, co-ordinated care and targeted support for individual patients and their carers.

    The framework is coming soon to help systems put this into practice, and then the job will be to make it happen.

    Now, making stuff happen can’t just be by ministerial decree – me saying it is not enough. Making things happen involves thousands of people who work in the NHS thinking, and doing, something differently. And in my experience, just telling people to do something doesn’t work – at least, not very well. We need people across the NHS to believe in this, to want to do it, and then to have the support to be able to do it.

    And what I would love from you, and I recognise I am preaching to the converted here today, is to do what you can to make this happen. Because if I know anything, the answers to the problems are out there, not up here.

    Before I sit down and take your questions, on my part, I can give you this assurance. People often talk about the NHS like it’s the National Hospital Service, not the National Health Service. And when the chips are down, the focus tends to be the hospitals and what’s going on in them. But I don’t let that happen on my watch.

    I’m always the one who says, ‘Hold on – what about the rest of the system?’

    If I go back to my solar system analogy earlier, the sun at the centre actually should be the person, the individual, whose health this is all about. Hospitals, community health services, mental health services, social care providers and so on – these are all important parts of the system.

    And the future of healthcare is as much about what happens out of the hospital, as what happens in it.

  • Wes Streeting – 2023 Speech on the Countess of Chester Hospital Inquiry

    Wes Streeting – 2023 Speech on the Countess of Chester Hospital Inquiry

    The speech made by Wes Streeting, the Shadow Secretary of State for Health and Social Care, in the House of Commons on 4 September 2023.

    I strongly echo the sentiments of the Secretary of State and thank him for advance sight of his statement. I welcome the appointment of Lady Justice Thirlwall to lead the inquiry into the crimes committed by Lucy Letby, and I strongly welcome his appointment today of Baroness Lampard to lead the statutory review in Essex. I look forward to receiving further updates from the Secretary of State as soon as possible.

    Turning to the case of Lucy Letby, there are simply no words to describe the evil of the crimes that she committed. They are impossible to fathom. Although she has now been convicted and sentenced to a whole-life order, the truth is that no punishment could possibly fit the severity of the crimes she committed. With Cheshire police’s investigation having expanded to cover her entire clinical career, we may not yet know the extent of her crimes. What we do know is that her victims should be starting a new school term today. Our thoughts are with the families who have suffered the worst of traumas, whose pain and suffering we could not possibly imagine, and who will never forget the children cruelly taken from them. We hope that the sentencing helped to bring them some closure, even though the cowardly killer dared not face them in court.

    I wish to pay tribute to the heroes of this story: the doctors who fought to sound the alarm in the face of hard-headed, stubborn refusal. This murderer should have been stopped months before she was finally suspended. Were it not for the persistent courage of the staff who finally forced the hospital to call in Cheshire police, more babies would have been put at risk. I am sure the whole House will want to join me in recognising Dr Stephen Brearey and Dr Ravi Jayaram, whose bravery has almost certainly saved lives.

    Blowing the whistle on wrongdoing is never easy, which is why it should not be taken lightly. Indeed, we can judge the health of an institution by the way that it treats its whistleblowers. The refusal to listen, to approach the unexplained deaths of infants with an open mind and to properly investigate the matter when the evidence appeared to be so clear is simply unforgivable. The insult of ordering concerned medics to write letters of apology to this serial killer demonstrates the total lack of seriousness with which their allegations were treated.

    I welcome the fact that the Secretary of State has changed the terms of the inquiry and put it on a statutory footing. There must be no hiding place for those responsible for such serious shortcomings. It is welcome that the inquiry will have the full force of the law behind it, as it seeks to paint the full picture of what went wrong at the Countess of Chester Hospital, and it is right that the wishes of the families affected have been listened to. I welcome the fact that they will be involved in the drawing up of the terms of reference.

    I ask the Secretary of State, people right across Government and people who hope to be in government to make sure that, in future, in awful cases such as this, families and victims are consulted at the outset. Can he assure the House that the families will continue to be involved in decisions as the inquiry undertakes its work?

    Mr Speaker, no stone can be left unturned in the search for the lessons that must be learned, but it is already clear that there were deep issues with the culture and leadership at the Countess of Chester Hospital. This is not the first time that whistleblowers working in the NHS have been ignored, when listening to their warnings could have saved lives. Despite several reviews, there is no one who thinks that the system of accountability, of professional standards and of regulation of NHS managers and leaders is good enough.

    Why were senior leaders at the Countess of Chester Hospital still employed in senior positions in the NHS right up to the point that Lucy Letby was found guilty of murder? The absence of serious regulation means that a revolving door of individuals with a record of poor performance or misconduct can continue to work in the health service. Does the Secretary of State agree that that is simply unacceptable in a public service that takes people’s lives into its hands?

    The lack of consistent standards is also hampering efforts to improve the quality of management. I am sure the Secretary of State will agree that good management is absolutely vital for staff wellbeing, clinical outcomes, efficient services and, most of all, patient safety. The case for change has been made previously. Sir Robert Francis, who led the inquiry into the deaths at Mid Staffs, argued in 2017 that NHS managers should be subject to professional regulation. In 2019, the Kark review, commissioned by the Secretary of State, called for a regulator to maintain a register of NHS executives, with

    “the power to disbar managers for serious misconduct”.

    In 2022, the Messenger review commissioned by the right hon. Member for Bromsgrove (Sajid Javid) recommended a single set of core leadership and management standards for managers, with training and development provided to help them meet these standards. We must act to prevent further tragedies, so I welcome the Secretary of State’s announcement that his Department is reconsidering Kark’s recommendation 5. Labour is calling for the disbarring of senior managers found guilty of serious misconduct, so I can guarantee him our support if he brings that proposal forward.

    The Secretary of State should go further. Will he now begin the process of bringing in a regulatory system for NHS management, alongside standards and quality training? Surely we owe it to the families and the staff who were let down by a leadership team at the Countess of Chester Hospital that was simply not fit for purpose.

    Finally, I know that I speak for the whole House when I say that the parents of Child A, Child C, Child D, Child E, Child G, Child I, Child O and Child P are constantly in our thoughts, as are the many other families who worry whether their children have also been victims of Lucy Letby. We owe it to them to do what we can to prevent anything like this from ever happening again. As the Government seek to do that, they will have our full support.

    Steve Barclay

    I thank the hon. Gentleman for the content of his response and the manner in which he delivered it. I think it underscores the unity of this House in our condemnation of these crimes, and our focus on putting the families at the centre of getting answers to the questions that arise from this case. I join him in paying tribute to those consultants who spoke up to trigger the police investigation and to prevent further harm to babies. I note the further work that the police are doing in this case, and also pay tribute to the police team, which I had the privilege of meeting. They have worked incredibly hard in very difficult circumstances in the course of this investigation.

    As the hon. Gentleman said, the families are absolutely central to the approach that we are taking. That is why I felt that it was very important to discuss with them the relative merits of different types of inquiry, but their response was very clear in terms of their preference for a statutory inquiry. I have certainly surfaced to Lady Justice Thirlwall some of the comments from the families in terms of the potential to phase it. Of course, those will be issues for the judge to determine.

    On the hon. Gentleman’s concerns around the revolving door, clearly a number of measures have already been taken, but I share his desire to ensure that there is accountability for decisions. As Members will know, I have been vocal about that in previous roles, and it is central to many of the families’ questions on wider regulation within the NHS.

    The hon. Gentleman mentioned the importance of good management. I am extremely interested in how, through this review and the steps we can take ahead of it, we give further support to managers within the NHS and to non-exec directors. The Government accepted in full the seven recommendations of the Messenger review. The Kark review was largely accepted. There was the issue of recommendation 5, which is why it is right that we look again at that in the light of the further evidence.

    It is clear that a significant amount of work has already gone in. A number of figures, including Aidan Fowler and Henrietta Hughes, have focused on safeguarding patient safety, but in the wake of this case we need to look again at where we can go further, which the statutory inquiry will do with the full weight of the law. I am keen, however, that we also consider what further, quicker measures can be taken. Indeed, I have been in regular contact with NHS England to take that work forward.

  • 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?