Oral Answers to Questions

Rachael Maskell Excerpts

Tuesday 19th October 2021 Commons Chamber

[Edward Argar]

I have known my right hon. Friend for a long time and he is eternally youthful. As my right hon. Friend the Secretary of State set out, the record investment that we are putting into our NHS, particularly to address the elective procedure backlogs, goes hand in hand with innovation and reform.

To the specific point of my right hon. Friend the Member for Gainsborough (Sir Edward Leigh), the NHS is utilising the independent and private sector to carry out procedures for NHS patients. As he would expect me to say, however, tax breaks or similar are matters for the Chancellor, not me.

[Rachael Maskell (York Central) (Lab/Co-op)]

The thresholds of the elective recovery fund have a perverse impact, so hospitals with the least capacity are more unlikely to have the money to build their capacity. What steps will the Minister take to ensure that my constituents in York have funding from the Government to help build that capacity and have the elective surgery they need?

[Edward Argar]

In respect of the elective recovery fund and the thresholds, the hon. Lady recognised that they are an additionality alongside the record extra investment that we are putting into our NHS. We are putting more resources in, alongside reform and innovation, to deliver that increased capacity. The elective recovery fund is also designed to stimulate activity and to reward additional costs over and above that activity. We believe it is the right approach to generate that increased activity.

Future of the National Health Service

Rachael Maskell Excerpts

Wednesday 22nd September 2021 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

It is a pleasure to serve with you in the chair, Ms Bardell. I thank my hon. Friend the Member for Leeds East (Richard Burgon) for opening the debate with so many facts that we need to reflect on. From before our first breath, to our very last, since 5 July 1948, the NHS has worked day and night to give us hope.

The principle was that, no matter who we were—duke or dustman, as Bevan said—we knew that, when the hands of the NHS reached out to us, it neither judged nor differentiated. It simply did everything it could to invest in our health. That equality was the way out of health inequality, which is, sadly, so stark today in constituencies like mine, where the most affluent can expect to live for 10 years more than the poorest.

Reading Michael Marmot’s report, there is something fundamentally missing from the NHS. This reorganisation will not address it. We must sew that into housing, air pollution, jobs—the things that really will bring about a fundamental change.

[Hannah Bardell (in the Chair)]

Order. I am sorry to interrupt the hon. Lady mid-flow.

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[Hannah Bardell (in the Chair)]

Before I call the hon. Member for York Central again, I advise Members that the new end time for the debate will be 4.15 pm, and that I would like to call Ministers by 3.45 pm.

[Rachael Maskell]

Unless and until public health is the Government’s first priority, the demands will be ever-growing, but now, unlike before, it is uncertain whether those demands will be met. Just look at covid-19: the countries that put public health first had the lowest sickness and mortality rates, yet over 135,000 lives have been lost here. Whether it is covid or cancer, poverty is the greatest enemy of health, yet as we speak, the surge in poverty that this Government are imposing on our constituents through the changes they are bringing about—whether through national insurance contributions, or by taking away the £20 universal credit uplift and other benefits—is resulting in poorer mental and physical health. After a decade of austerity, poor workforce planning and a continued drive to profit off the sick have taken their toll on our NHS. In 2019-20, according to the King’s Fund, £9.7 billion was spent on private provision, up by £500 million on the previous year. According to the data provider Tussell, £37.9 billion-worth of covid contracts have been let.

The economic and health shock of covid should prompt us to hit the pause button on the NHS. Last Friday, I spent half a day with York Medical Group, with clinicians, managers, GP partners and support staff; I was there to listen. This Friday, I will be at York Hospital, which is also struggling. The GP practice has received 41,000 calls from a population of 44,000 patients on their books in a month; add to that the 5.6 million, rising to a possible 13 million, waiting for treatment in secondary care. The system is imploding, the staff are imploding, and the NHS is imploding. We cannot just keep feeding money into the NHS, and we cannot keep selling it off.

When I read the subject of the debate—“the future of the NHS”—I did not consider the Health and Care Bill to be that, nor did the staff who I met with. In fact, they see the Bill as a massive distraction from dealing with the current crisis that they are having to grapple with, and another assault is just one step too many. Staff are saying that to save their own mental and physical health, they are now having to walk. We therefore have a workforce crisis on top of a health crisis, and the NHS is now in a clinically dangerous place. Government Ministers who completely misunderstand how the NHS works cannot just keep interfering in the system. They need to pause. They misunderstand the professionalism, care, dedication and love of the people who give all that they have—day in, day out—to care for us. As Ministers introduce more complex systems and more private companies into the health service, the NHS itself is falling apart. The Health and Care Bill is not the solution; it cannot be the way forward.

On the integration of the health service and social care, if we do not put the money together, we cannot put the systems together. However, the reforms will create more barriers and more division, rather than solving the challenges before us. The World Health Organisation describes health as

“a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.”

A future NHS must start here. Public health has been so underfunded over the last 10 years, and even under-utilised during the pandemic. It is absolutely vital that it is at the forefront of the future NHS. Regular population screening will start addressing severe health inequalities. Health counselling will ensure that people make the right choices about their future and will divert people who do not access the health service when they need it into early intervention and prevention. If we invest in clinicians in the community to undertake that dialogue and those discussions, and if we invest in social prescribing and other ways of improving people’s lifestyles, we have a real chance to turn this system around.

We cannot delay putting together an integrated public health agenda to drive forward our health service. If we continue as we are, our NHS will not be here. The pressures bearing down now are just indescribable. After listening to staff, all I can say is that the Health and Care Bill is just not the solution.

Covid-19 Update

Rachael Maskell Excerpts

Tuesday 14th September 2021 Commons Chamber

[Sajid Javid]

I agree with my hon. Friend. Some 6 million adults throughout the UK remain unvaccinated, and we should all do that we can to at least encourage them to think about taking the vaccine, not only to protect themselves but to protect their loved ones.

[Rachael Maskell (York Central) (Lab/Co-op)]

I am seriously concerned about the hole in the Secretary of State’s defence—taking away contact tracing from public health teams. The data coming through is now completely insufficient to carry out an effective operation locally and therefore to lock down the virus, and not people, in the future. Will he look at that and ensure that local authorities such as York can have that zero data so we can get on top of contact tracing as soon as the data emerges?

Covid-19 Vaccinations: 12 to 15-year-olds

Rachael Maskell Excerpts

Monday 13th September 2021 Commons Chamber

[Nadhim Zahawi]

I am grateful for my right hon. Friend’s really important question. I want to spend a few seconds explaining this to the House, because it is really important. He mentioned that the decision would lead to teachers having to explain; actually, it is quite the opposite. It is not the teacher’s responsibility to do that; it is a qualified clinician’s. The school-age vaccination programme is very well equipped to do that in a discreet and careful way with parents and with the child. However, that will be on very rare occasions; the bulk of vaccinations will be conducted only if there is parental consent.

[Rachael Maskell (York Central) (Lab/Co-op)]

It is really important that every parent has access to a supported conversation—we know that that is a very positive public health intervention—but it is important for every young person too, because they also want to be equipped with information. I see the Minister nodding. In light of that, and not just one new vaccine programme but a second one, can he explain the resourcing of staff to not only vaccinate but provide that information? In addition, can he explain why 11-year-olds are being excluded? Our secondary system runs from 11 upwards, as opposed to 12.

[Nadhim Zahawi]

Our regulator has only regulated the vaccines for 12 to 15-year-olds. I reiterate the point that the school-age vaccination programme and the infra-structure we have is very well versed in delivering vaccines and gaining consent. Of course, the NHS in England—the same is happening in Scotland, Wales and Northern Ireland—has been thinking through exactly how the communication, the comms and the leaflets, will be provided to parents so that they have the information necessary to be able to make the decision for their child to be vaccinated.

NHS Update

Rachael Maskell Excerpts

Wednesday 21st July 2021 Commons Chamber

[Helen Whately]

Isolation is an important part of our defence against the pandemic. We know that those who are contacts are around five times more likely to be infectious. That is why isolation is so important. My hon. Friend is correct to say that there has been a very specific policy for a limited number of NHS and social care staff in exceptional circumstances and subject to a risk assessment. The conditions for someone to work if they are a contact are: they are double vaccinated; they receive regular PCR testing; and the decision is subject to the approval of the director of public health, or an appropriate public health individual. As I say, the conditions are very limited and specific. The Prime Minister also said that we will make sure that crucial services will be able to continue to operate, even while recognising that many people are currently isolating; that that goes beyond health and social care; and that in mid-August we will introduce a new system.

[Rachael Maskell (York Central) (Lab/Co-op) [V]]

I spent 20 years working in the NHS, but I have never known the NHS to be under such extreme pressure.

Mental health needs are unmet; NHS waiting lists are going through the roof; GPs are completely overrun and unable to cope; and there is no solution to our social care crisis. The Tories have achieved what I did not believe was possible: they have broken the NHS and care service and they have broken the NHS and care staff. In that shadow, the Minister should be ashamed to bring such a vacuous statement to the House today. Will she now immediately enter into urgent cross-party talks on how we can rescue this disastrous mess before staff and patients bear further sacrifice.

[Helen Whately]

I do not agree with the hon. Lady’s description of the situation. It is clearly absolutely true to say that our NHS staff and social care staff have done tremendous things during the pandemic, and clearly they are still doing so as covid is still so much with us. They have gone above and beyond time and again. It has been important that we have put in place extra support and we will continue to make sure that there is extra support for staff. We will announce our decision on NHS pay in due course.

Health and Care Bill

Rachael Maskell Excerpts

2nd reading
Wednesday 14th July 2021 Commons Chamber

[Sajid Javid]

Clinical decisions should always be made by those with clinical expertise—I think everyone in the House would agree on that—and that should be independent of any outside interference. The Bill does nothing to alter that. What it does is recognise that the NHS is one of the public’s top priorities. We spend over £140 billion of taxpayers’ money on the NHS, and it is right that there is proper accountability for that spending to Ministers and therefore to the House. I think that most people would welcome that.

[Rachael Maskell (York Central) (Lab/Co-op)]

The Secretary of State has talked about people he has consulted, so would he confirm that he has consulted the trade unions, particularly on schedule 2, which says that integrated care boards may appoint employees to address remuneration, pensions and terms and conditions. Can he confirm that that is a departure from Agenda for Change terms?

[Sajid Javid]

There have been wide-ranging consultations on the Bill, as I mentioned, which have taken place over the past two years. While I cannot say specifically which trade union or which particular organisation has been spoken to, as I was not in the Department at the time, I know that the conversations have been wide ranging.

The Bill is not the limit of our ambitions on the nation’s health. We are also transforming public health; we are bringing the Mental Health Act into the 21st century; and, by the end of this year, we will set out plans putting adult social care on a sustainable footing for the future.

We are also ambitious for our workforce. I have commissioned Health Education England to refresh its strategic framework for health and social care workforce planning. HEE will work in partnership across the sector and gather views from the widest possible range of stakeholders to help us to shape a workforce with the right skills, the right knowledge and the right values for the year ahead.

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[Rachael Maskell (York Central) (Lab/Co-op)]

This Health and Care Bill has been conceived in bunkers behind screens within echo chambers. It is straight from the US health market, and its architects are immune to objection from the frontline leaders who are expected to deliver a new health and care system. In case the Government had not observed it, those people are in the midst of managing a pandemic, its resurgence and its aftermath. They are holding together a fragile workforce, traumatised by the pressure and sacrifice of the covid war. They are vaccinating a nation while seeing others fall to preventable diseases. They are embracing those with broken minds as they try desperately to hold on to their own.

It is no time to strip out the NHS’s infrastructure and replace it—eager as we are to do so—with something as ill-defined, void of detail and illiterate as the Bill presents. The Bill will shift the blame for an imploding NHS and shattered care system from the impervious Prime Minister to NHS workers. The backlogs will be their fault. They will be to blame for service cuts, and the Government will shrug their shoulders at the postcode lottery and rationing. We have more than 5 million people waiting for hospital appointments. We are unable to see a GP for weeks. We are waiting longer than ever at A&E and, when the care system fleeces people for all they have and fails to restore their dignity in their fading years of life, the Bill scapegoats local health and care teams while the Government wash their hands.

We are in this mess because, in 2012, the Government—and, let us not forget, their Lib Dem chums—messed with our NHS, ignored clinicians and seeded the failures that we have witnessed throughout the pandemic. History repeats itself. The market-driven system enabled Ministers to sign away billions of pounds on crony contracts while frontline staff were wrapped in bin bags—and some, tragically, in body bags. The Bill lets the Government off the hook. When things go wrong, they will simply blame others as they avoid shame. But, worse, private companies are already sitting round the tables of the shadow integrated care systems to profit further. Nothing has changed. If the Bill changes nothing, we do not need it to further destroy the remnants of Labour’s precious NHS. At the one time we need certainty, there is none.

The Bill fails to provide the vital stability, funding, accountability or transparency that is needed. It fails on prevention and the advances that patients need. It has more private commissioning, not less, no workforce planning or vital staff pay and, crucially, no social care, yet the NHS will integrate with it. Labour believes that people deserve better. We must have integrated health and social care, free to all in need, wholly delivered in our public sector by fairly rewarded staff and accountable to this Parliament and to the people. Now is not the time and this is not the Bill. I will vote against it.

National Health Service

Rachael Maskell Excerpts

Tuesday 13th July 2021 Commons Chamber

[Helen Whately]

My right hon. Friend asks an important question about how things would work in practice, although I think he is presuming that there is a question of compensation. I expect to see care homes being able to follow a process, and so long as they follow a fair process, there should be no need for the compensation that my right hon. Friend suggests. We will set out guidance, but the point is that there is a fair process in which, for instance, a care home can discuss vaccination with its staff member and, indeed, look at whether there might be an alternative role for an individual if they really do not want to be vaccinated, although I am realistic that there are not that many roles for staff in care homes that do not involve being in the care home. After that, if the situation is still that the staff member does not wish to be vaccinated, the care home must follow a notice period and make sure that it follows a fair process.

[Rachael Maskell (York Central) (Lab/Co-op)]

I want to help the Minister. We are having to make a decision this evening on the balance of risk, but we have not been given the data because the impact assessment has not come forward. The Minister is, in effect, asking us to make a decision on information that we have not yet been able to see. Would it not therefore be more sensible to withdraw this statutory instrument and ensure that we have the right data in front of us, so that we can then make an informed choice?

[Helen Whately]

We live in an uncertain world, but we know that covid is a killer for people living in care homes and we know that the winter ahead of us is going to be challenging both because of the ongoing circulation of covid and because of flu. The question we should put to ourselves today is: what are the steps that we can take to make people safer in the months ahead? This time last year—last summer—infection rates were low, but we did not sit back and say, “In that case, it’s going to be okay for the winter.” We in Government, working with local authorities and care homes, made preparations for the winter ahead. Thank goodness we did make those preparations. Although sadly there were many deaths, had we not put in place the personal protective equipment distribution system, had we not had the level of regular testing that went on in care homes throughout the winter, and had we not had the support with infection prevention and control, I fear that last winter would have been much worse. We know that the winter ahead is going to be another challenging one and we must prepare for it.

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[Dr Rosena Allin-Khan (Tooting) (Lab)]

Since the start of the pandemic, our lives have all been deeply affected. Our key workers have experienced more than their fair share of grief, strife and sacrifice. Our care staff have truly been the best of us during the past 16 months, nursing our loved ones at the end of their life, being the person who holds our relatives when they are scared and confused, and facilitating greetings through windows and fences and across roads. They have been family to our vulnerable relatives over the past year, and for that I will be forever grateful. I do not think we will ever be able to repay that debt.

These are not the words of a politician or even a doctor; they are the words of a daughter who had to say goodbye to her father during the pandemic. I am eternally grateful for the care my father received, which went above and beyond what I could have expected. Carers showed my family and me what humanity truly is: changing their shifts to be with him, being on the end of the phone whenever we needed them, and facilitating whatever they could for us to be with him in his last moments. I can never repay my father’s carers for the humanity that they showed him as his condition worsened while my family could not be by his bedside.

Carers were scared, and many still are. The idea of passing a deadly virus on to the people in their care tormented them, and that is why we are here today. The idea that care workers do not think about the day-to-day safety of the people they care about is an insult. From my own experience, I know that their residents are of the utmost importance to them. So often poorly paid, they put in the gruelling work because they truly care. To argue that they do not neglects their fears. We want everyone working in a care home to take up the vaccine, which is safe and effective, but we are not inclined to support these proposals or the case for compulsory vaccination.

There are serious warnings from the care sector that the Government’s plan could lead to staff shortages in already understaffed care homes. This would have disastrous consequences for the quality of care. It is vital that we examine the current reality of life on the frontline in care settings. During the pandemic, Unison surveyed its members, who shared that they were feeling more anxious and depressed than before owing to the fear of passing the virus on to their relatives and those under their care. Many felt that their management were not equipped to support their needs. Resoundingly, care workers just wanted people to listen to their experiences and the challenges they were experiencing without, and I quote, “fear of being singled out as a troublemaker”.

[Rachael Maskell]

I am really grateful for the speech that my hon. Friend is making and obviously pass on my condolences to her. Does she agree that after all that our care workers have been through, what they need at this time is not only supported conversation about how they can progress with their own vaccination, or not, but to have the right people in place giving them that supported conversation?

[Dr Allin-Khan]

It is almost as though my hon. Friend has read the rest of my speech. I could not agree more.

We have to listen to our care workers today. For the young, pregnant carers worried about their next pay cheque, will these proposals make them more secure? For all those carers from communities who have lost trust in authority, will the threat of losing their jobs instil more trust? For all those carers who have loved and cared for their residents but have concerns about the vaccine and have not had anyone answer their questions, are they being told that their dedication is suddenly irrelevant?

To understand why there may be hesitancy among care home workers to take up the vaccine, it is important to understand the health inequalities that much of the workforce face. Ethnic minorities are over-represented in the adult social care workforce, with 21% of all care staff coming from a minority ethnic background. Negative experiences of a culturally insensitive health service, the higher rates of death from covid for people from black and south Asian communities, and a lack of representation of minority groups in vaccine trials and wider health research all serve to build distrust in the health system. These are some of the communities that have been hit the hardest during the pandemic.

The disproportionate use of coercive and restrictive practices on minority communities also, importantly, erodes trust in the system. Black people are four times more likely to be detained under the Mental Health Act 1983 than white people, despite making up a much smaller percentage of the overall population. With trust so low, that creates hesitancy, but this can be overcome through effective communication and an understanding of the issues that have created it. Further coercion and punishment through the threat of being dismissed from employment only reinforces the reasons for hesitancy in the first place.

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[Rachael Maskell]

Will the Minister give way?

[Helen Whately]

I am sorry, but I am conscious of the time left.

Several hon. Members have argued that we should continue the current approach to increasing uptake and indeed do more. Of course, we will continue to support care workers to take up the vaccine, but, as flagged by my hon. Friend the Member for Winchester (Steve Brine), the question is: how long do we give that? The vaccination of care home workers in England began in December last year, about eight months ago. We did take a similar approach to that in Scotland mentioned by the hon. Member for Central Ayrshire (Dr Whitford), where staff were vaccinated alongside residents in care homes. NHS teams went into care homes multiple times to offer the vaccination to staff. Indeed, we saw that that was effective and more staff took up the vaccination on subsequent visits. We also opened the national booking system to care home staff early on, before there was wider availability to everybody. We have worked with communities who have been particularly concerned and hesitant about vaccination. There have been materials in multiple languages. We have worked with faith groups. Local authorities have worked closely with care homes, alongside NHS vaccination teams, particularly care homes that have had lower vaccination rates. A huge amount has been done to raise the levels of uptake among care home staff.

We then have to ask ourselves the question: what more can we do? The No. 1 reason care home staff have given us for not yet being vaccinated is that they want some more time. Well, this gives them some more time through the summer in which to get vaccinated. Some care homes, as I have mentioned, are already doing this. One example is the Barchester care home group, which has over 16,000 staff. The vast majority, over 99%, have chosen to be vaccinated. Fewer than 0.5% have chosen not to be vaccinated. But the problem, if we leave it to care homes that are on the front foot to do this, is that others will be left behind and we will see inequality, where some residents are fortunate to be cared for in a care home where all the staff are vaccinated, and others will not be so safe. That leaves us with inequality for those care home residents, who will remain at greater risk. We know that the vaccination not only protects individuals, but reduces the risk of transmission.

Some hon. Members have raised the concern that care workers are being singled out in some way. That is not the case at all. This is about the setting of care homes, where we know there is the greatest risk and the greatest vulnerability to covid. This is about protecting individual residents in those care homes by requiring the vaccination of people who enter those care homes to work—so not only care home staff but NHS staff who enter care homes. This is about protecting residents in those care homes. Fortunately, at the moment, the rates are lower than they have been during peak times, but even in some of the recent outbreaks we have seen in care homes, the index case has been an unvaccinated staff member. That just emphasises the importance of us having high levels of vaccination among staff.

My hon. Friend the Member for Workington (Mark Jenkinson) asked me about the data I referred to earlier, the SAGE data on minimum levels and the extent to which that is being achieved by care homes. I shared the most recent data that I have. What we do know is that there are still hundreds of care homes that have not yet met that safe threshold, which is a minimum threshold for avoiding outbreaks in care homes.

I say to my hon. Friends that the question before us is: what more can we do to protect those who are vulnerable in care homes? This is what we can do and I commend the regulations to the House.

Motor Neurone Disease (Research)

Rachael Maskell Excerpts

Monday 12th July 2021 Westminster Hall

[Rachael Maskell (York Central) (Lab/Co-op)]

Thank you, Ms Cummins, for chairing this afternoon’s debate. I also thank the petitioners for their strength in putting forward the petition we are debating today: I know that for many of them, this issue will be personal. For myself, as a clinician who worked in neurology, I worked with many people with motor neurone disease. I am also a constituency MP who is supporting my constituents, and my uncle—a radical academic in his day—sadly was lost to MND.

One in 300 people is likely to have MND, and once diagnosed, life passes all too quickly, so in opening I put on record my thanks to all those who have supported people with MND over the past year, in what has been the most challenging of all years: the clinicians, the families, the carers, the Motor Neurone Disease Association, and the wider community. At times, it has seemed that covid-19 has been the only battle the NHS has had to face, but its dominance has compounded the challenges that others have had in other areas of medicine. Although we have seen so many miracles in the NHS over the past year, we are now calling for another miracle, which is for the Government to release vital research funding. As clinicians, we want to do everything we can for our patients, and it is frustrating and stressful when we can see the solutions, but do not have the means to deliver them.

As we have seen, when we put the necessary investment into prevention and cure, it provides hope, and our nation has been given that hope about covid-19 by the brilliant scientists who have developed the vaccine. We want that research to lead to a new path for people with motor neurone disease. Of course, we understand that scale matters, and that is why so much focus has been given to the pandemic. However, when a third of a million people at any one time across the globe has motor neurone disease, we can see that scale is important for that disease, too. As internationalists, we must work across borders to ensure we find the right science and solutions in medicine. To date, the cause of MND is largely unknown, and the cure is yet to be found. Most research has been based on bettering somebody’s prognosis over a shorter period, and enhancing their quality of life while they are able to hold on to it.

Although the Government are one source of funding, uniquely in the UK the charity sector funds medical research, accounting for about 51% of all funding through the generous donations of 7 million people, research trusts, and funds. That sector funds about 17,000 researchers in all, and the basis of research in the UK needs to be thought through again so that big pharma is not taking some of the resourcing and the long-term profits, to ensure reinvestment in research and more money going into that area.

Back in 2014, MND had a funding boost through the ice bucket challenge, which certainly increased research opportunities. However, this pandemic has had a significant chilling impact on medical research over this past year—one we can ill afford—as research scientists have had to find work elsewhere. Charities themselves have had fundraising opportunities stopped and their shops shut, and Governments have not stepped in to support the charities that are behind all of this important medical research, not least on motor neurone disease. That is why the proposal to create a bespoke £50 million fund over five years to invest in a specific MND research institute, making the UK a global leader yet again, is so important for all of us. I therefore urge the Minister to seriously consider this proposal, not least because the Association of Medical Research Charities came together last year and made a proposal for a life science charity partnership fund, with £310 million invested over a three-year period, to address the deficit that they have experienced during the pandemic. The Government have not come up with the resources to meet that challenge, which is grossly disappointing.

I trust that the proposal before us will be acknowledged, because for every £1 invested, there is a 25p life-time return in benefit, which far outstrips the value that other investments made by Government can bring. If health and science development and research is a major industry in the UK, valued investment in that research will bring long-term economic benefit, as well as real personal benefit for those involved.

As our melting pot of research enables world-class research to move forward, as well as enabling innovation here, I trust that the Minister will respond positively and bring real hope to the thousands of families who need to know that hope is on the horizon.

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[The Minister for Care (Helen Whately)]

It is a pleasure to serve under your chairmanship, Ms Cummins. I thank the hon. Member for Linlithgow and East Falkirk (Martyn Day) and congratulate the petitioners on securing this important debate. I pay particular tribute to the petitioners and to the charities, the MND Association, MND Scotland and My Name’5 Doddie Foundation, for leading the campaign that has brought us here today. I also thank all hon. Members who have spoken so powerfully, sharing the stories of people suffering from this cruel disease and adding their voices to the petitioners’ campaign.

The petition was started in the name of Doddie Weir, the Scottish rugby legend, who has been an inspirational figurehead, campaigning for a world free of MND, since he revealed in 2017 that he was suffering from the disease himself. I had the good fortune to meet, virtually, Doddie and others with MND at a recent roundtable event and I, too, was inspired by their campaign for a brighter future for people living with MND. Doddie’s charity, My Name’5 Doddie Foundation, works tirelessly to raise funds for research into a cure and to provide grants to people living with MND. I want to express my immense gratitude to Doddie and to everyone living with MND for giving their voices to this campaign and sharing their experiences of this awful disease and their hopes for the future. I know that people living with MND will be listening to the debate today and looking for hope. It is to them and to the more than 100,000 people who stand in solidarity with them that I address my remarks.

MND is a brutal condition that has a devastating impact on those who are diagnosed, and on their families and loved ones. As the petition has highlighted, MND can progress very rapidly, and tragically there is currently no effective treatment and no cure. We still do not know exactly what causes motor neurons to die off. Although a small percentage of cases are genetic, the majority of people with MND have no family history of the disease. There is only one drug treatment for MND, and it may slow the disease’s progression for some people. The lifetime risk of developing MND is as high as one in 300 people.

We are making great strides in research, which I will talk about shortly, but we still have a way to go in our research to understand the disease mechanisms and to identify effective treatments. Before I address that progress and our plan to accelerate MND research, I want to speak about how the Government are currently supporting people with MND. Through specialised services delivered by the NHS, people with MND are receiving treatment and support to ease their symptoms and to support their continued independence for as long as possible. That includes the prescribing of complex communication devices to help people with MND to communicate as effectively as possible; offering non-invasive ventilation to support respiratory function; and delivering personal care and support for the needs of the individual.

In 2019, the National Neurosciences Advisory Group published a toolkit for improving care for people with progressive neurological conditions, including MND. That toolkit is helping commissioners to improve the pathways for people with MND, enabling quicker and more accurate diagnoses, services that are more co-ordinated, flexible and responsive to the rapidly changing needs of the patient, and improved choice in end-of-life care for people with MND. That is so that people with MND receive the best possible care. However, although the NHS is delivering that specialised treatment and support to people with MND, we know that it is not the same as a cure.

In recent years, researchers have made major advances in our understanding of MND. For example, we now know more about the types of MND that have a genetic cause, for which gene therapy might be an effective treatment. Although that accounts for only about 10% of people with MND and we still need treatments for the remainder, it is an important development. Researchers are also making progress in the development of the MND register and MND biobanks—data resources that are aiding researchers in understanding the disease. Through the development of novel biomarkers, scientists have more effective ways to monitor responses to treatment in clinical trials; and through innovative and flexible trial designs, researchers are able to conduct faster and cheaper trials, which will deliver potential new treatments to patients more quickly.

I can assure hon. Members here today that this Government are committed to supporting research into MND. I have heard the request from campaigners for Government to invest £50 million to create an MND research institute, and I understand why petitioners are asking for this. However, ring-fencing funding for particular diseases can stop great science. That is why the Government make funding available for researchers in all areas to apply for. Awards are granted in open competition and determined by the quality of the science. Through those funding mechanisms, the Government are supporting a wide range of research into MND.

In 2019-20, UK Research and Innovation, through the Medical Research Council, spent £16 million on MND research. That included research that aims to increase understanding of the causes and genetic mechanisms of MND and amyotrophic lateral sclerosis—ALS—a form of MND. For example, scientists at the UK Dementia Research Institute are working to increase understanding of the root causes of ALS and frontotemporal dementia, and to identify ways of protecting brain cells from damage. There is significant overlap between the genetic causes of MND and some types of dementia, which is why the UK Dementia Research Institute, funded in partnership with Alzheimer’s Research UK and the Alzheimer’s Society, has made significant investment in MND research.

At the Francis Crick Institute, which is co-funded by the Medical Research Council, Wellcome and Cancer Research UK, researchers are working with stem cells to investigate the earliest molecular events of MND. With support from the Department of Health and Social Care, the National Institute for Health Research is directly funding MND research, for instance the Lighthouse phase 2 study, which is a clinical trial of a drug repurposed from the treatment of HIV. This study, involving 300 people with MND, will test the effectiveness of the repurposed drug in improving survival rate, function and quality of life for people with MND.

[Rachael Maskell]

I am grateful to the Minister for outlining all the research that is being done. However, the benefit of a virtual research institute would be co-ordination, to ensure that there was real focus on bringing about a real resolution for people with MND. Having a piecemeal approach will not provide the real focus that is required. Will she recognise that and therefore reflect on the ability to bring forward such a proposal in the comprehensive spending review in the autumn?

[Helen Whately]

I thank the hon. Member for her point; I will come on to say a bit more about that, and I assure her that I have absolutely heard her argument. However, I am addressing as I go some of the comments and questions raised by hon. Members during the debate, one of which was a request for some examples of research. I have just mentioned one, but there are a couple more that I want to give.

At the NIHR Sheffield Biomedical Research Centre, researchers are trialling the safety and efficacy of a drug called tauroursodeoxycholic acid, or TUDCA, as a treatment for people with ALS. The NIHR is also funding research to enhance support and care for people with MND, with ongoing studies looking at nutrition, diet and therapies to improve psychological health.

Over the past five years, the Government have spent almost £60 million on research into MND and we are currently working on ways to boost this research even further. The hon. Member for Linlithgow and East Falkirk and other colleagues asked about the total figure of nearly £60 million over the five-year period from 2015-16 to 2019-20. That includes research funded by the Government—through both NIHR and UKRI—focused solely on MND; research on MND and frontotemporal dementia, the causes and mechanisms of which have a substantial overlap with MND; research on neurodegenerative conditions that have many commonalities with MND; and spend on research infrastructure within NIHR, supporting MND studies. I hope that that provides some greater clarity on the research spending. In addition, the Government fund research on the structure of the nervous system, cell biology and genetics, and mental processes such as learning and memory. UKRI supports that research with around £30 million of funding per annum.

Use of Patient Data

Rachael Maskell Excerpts

Thursday 24th June 2021 Commons Chamber

[Mr Davis]

Thank you, Mr Deputy Speaker. I take it you do not want me to start from the beginning again. That might test people’s patience a little.

As I was saying, if the giants of data security can be hacked, what chance the NHS? Big databases and big systems are intrinsically vulnerable. In 2017, a ransomware attack brought parts of the NHS to its knees. Trusts were forced to turn away patients, ambulances were diverted and 20,000 operations were cancelled. That highlights significant problems the Government have not yet had time to address. Despite those problems, the Government have been determined to press ahead with their data plans regardless. They undertook no widespread consultation, provided no easy opt-out, and showed no particular willingness to listen as would be proper with such an important move. The public were given little over a month to opt out of a data grab that few knew existed. The plan was described by the British Medical Association as “a complete failure” and “completely inadequate”.

The Government’s riding roughshod over our privacy was halted only when a coalition of organisations, including digital rights campaign group Foxglove, the Doctors’ Association UK, the National Pensioners Convention and myself, challenged the legality of the state’s actions. Our letter before legal action and threat of injunction forced a delay of two months. That is a welcome pause, but it has not resolved the issue.

Earlier this week, the Secretary of State published a data strategy that raised the possibility of using health data to improve care, something I know is close to his heart, but plans for securing and handling our data were consigned to a single paragraph—almost an afterthought. If the Government do not take corrective action to address our concerns, there will inevitably be a full judicial review. I have no doubt that, without clear action to both protect privacy and give patients control of their own data, the Government will find themselves on the losing side of any legal case.

Today, I hope and believe the Government will have the courtesy to listen. Indeed, if I may, I will thank the Secretary of State for being here personally today. It is very unusual for a Secretary of State to take the time to be here—he must be the busiest man in the Government—and address the issue today. That he has done so is, I think, a compliment to him.

A comprehensive health database undoubtedly has the potential to revolutionise patient treatment and save hundreds of thousands of lives. However, this data grab is not the correct approach. There are much better, safer and more effective ways to do this in the national interest. No system is ever going to be 100% safe, but it must be as safe as possible. We must find the proper balance between privacy and progress, research and restrictions, individual rights and academic insights. That also means controlling the companies we allow into our health system. Patient trust is vital to our NHS, so foreign tech companies such as Palantir, with their history of supporting mass surveillance, assisting in drone strikes, immigration raids and predictive policing, must not be placed at the heart of our NHS. We should not be giving away our most sensitive medical information lightly under the guise of research to huge companies whose focus is profits over people.

Of course, this was not Whitehall’s first attempt at a medical data grab. The failed care.data programme was the most notorious attempt to invade our privacy. Launched in 2013, NHS Digital’s project aimed to extract data from GP surgeries into a central database and sell the information to third parties for profit. NHS Digital claimed the data was going to be anonymised, not realising that that was actually impossible. The Cabinet Office described the disaster as having

“major issues with project definition, schedule, budget, quality and/or benefits delivery, which at this stage do not appear to be manageable or resolvable.”

The project was ended in July 2016, wasting £8 million before it was scrapped.

However, care.data was just one example. I am afraid the Department has a long and problematic history with IT. Before care.data the NHS national programme for IT was launched by Labour in 2003. It sought to link more than 30,000 GPs to nearly 300 hospitals with a centralised medical records system for 50 million patients. The initial budget of £2.3 billion—note billion, not million—ballooned to £20 billion, which had to be written off when the programme collapsed in 2011. My old Committee, the Public Accounts Committee described the failed programme as one of the

“worst and most expensive contracting fiascos”

ever.

The possibilities to make research more productive, quicker and more secure are goals worth pursuing. There is no doubt that we all agree on the aims, but the path to progress must be agreed on, and there is clear concern among the public, GPs and professional bodies about this new data system.

[Rachael Maskell (York Central) (Lab/Co-op)]

I am very grateful to the right hon. Gentleman not only for giving way, but for leading today’s very important debate. It has been a really difficult year both for clinicians and for the public. The public understand the importance of research and planning, but they need confidence that their data—often about very intimate health needs—is secure. Given the need to maintain the special relationship between the clinician and patient, does he agree that the insufficiency of the current processes will damage that relationship, and therefore that we need a complete rethink about how data is collected and then used appropriately?

Social Care Reform

Rachael Maskell Excerpts

Wednesday 23rd June 2021 Commons Chamber

[Helen Whately]

It is really important that discharge is carefully planned and that there is care and support at home for somebody when they are discharged from hospital, but it is also really important that we ensure that people are discharged when they are ready to leave. I saw that with my own grandmother, who ended up spending months in hospital owing to problems with her being discharged. Goodness, I wish that she had been discharged sooner—that would have been so much better for her. It is right that we support people to be discharged when they are ready to go home, and we should press ahead with doing that, although we must also ensure that support is there for people in their home.

[Rachael Maskell (York Central) (Lab/Co-op)]

If we are truly to see the full integration of health and social care, that will require us also to see the full integration of the funding of health and social care—free at the point of need, contributed by all. When the Minister brings forward her proposals, will she ensure that that is an option we can consider? Will she bring forward those proposals ahead of debating the health and care Bill, so we actually know what we are trying to debate in that piece of legislation before talking about social care?

[Helen Whately]

I cannot at this point go into the details of the proposals that we are working on for social care reform. I have tried to give the House today a sense of the breadth and scale of our ambition. As to the point on timing, the way I see it is that the health and care Bill is a step on the road to reform, including the statutory role of integrated care systems and the development of the assurance system. I do not see them tied together in the timing in the way she sets out. What I can say is that we will be bringing forward our proposals for social care reform later this year.