Hospice Services: Support

Debate between Helen Whately and Rachael Maskell

Wednesday 14th June 2023 Westminster Hall

[Helen Whately]

I commit to continuing to dig into getting visibility on the extent to which extra funding is going through to hospices. Of course, there is a balance to be struck when giving integrated care boards the freedom to do what we want them to do, which is to understand fully the needs for care in their populations, and make good decisions about how they fund care for their populations. None of us believes that a Minister in Westminster has the answers about what should happen and exactly how funding should be distributed in every single one of our communities. I will continue to get that visibility, because it is important that we know the extent to which our hospices are getting support for the extra financial pressures that we have been discussing.

[Rachael Maskell]

Will the Minister give way?

[Helen Whately]

I will make a bit of progress, because I am conscious that the clock is ticking.

Integrated care boards are responsible for ensuring the provision of the end of life and palliative care that is needed in our communities across England. In addition to the funding, I am working with NHS England to ensure greater visibility relating to what that means in practice and what is being commissioned.

The shadow Minister’s point about inequality of access was very important. We know that there is inequality of access to palliative and end of life care. Some communities are much better served than others, in part due to the fantastic legacy of our hospices: where there is a really good hospice, there is often much better access to end of life and palliative care around it. We want to improve equality and reduce some of the disparities in access to end of life care. As part of that, people should be able to do what most people want—to die at home with the right support in place.

I want to talk about the funding for children’s hospices, which several hon. Members brought up. Recognising the importance of palliative and end of life care for children and young people, NHS England provided £25 million specifically for that, via the children’s hospice grant during this financial year. I have, of course, heard the calls for that grant to be continued, and for greater continuity and visibility of funding further out. I cannot say more on that today, but I can assure hon. Members that I have been speaking to NHS England about that funding beyond this year. I do expect further new to be communicated about that shortly, appreciating the level of concern among hon. Members and children’s hospices in their communities.

[Rachael Maskell]

I am grateful to the Minister for giving way. The Health and Care Act 2022 put a responsibility to fund palliative care on the statute books. Will the Minister set out what has changed, to enable that funding to come forward? We know there are people in our communities who are not receiving that care, although they need to now under the law. The funding needs to be in place for them to receive the care that they need at the end of life.

[Helen Whately]

That alludes to exactly the point I made a moment ago. As flagged in that 2022 Act, ICBs have responsibility for commissioning that care, using the budgets they receive through NHS England. I am working to ensure the visibility of the commissioning, to be assured that that is taking place, so that we can be assured about the availability of end of life and palliative care for our communities.

I want to make a final point as I close; I am looking at the clock ticking. Against the backdrop of financial concerns, which I of course recognise and which we are discussing, is the strength of hospices in their communities, and the importance, as mentioned by hon. Friends, that they are not solely financially dependent on the state and the NHS for funding. They receive some NHS funding, but it is important that hospices are successful in fundraising and gaining support from our communities. That is one of the strengths of their model, and I want to continue to support that.

I pay tribute to all the volunteers and those involved in fundraising, including many hon. Members this morning who mentioned the fundraising efforts that they are personally making for hospices in their communities. I wish very good luck to my hon. Friend the Member for Eastleigh for his forthcoming skydive. All credit to him for having the courage to jump out of an aeroplane. I sincerely hope that he is successful.

Oral Answers to Questions

Debate between Helen Whately and Rachael Maskell

Tuesday 17th May 2022 Commons Chamber

[Helen Whately]

As my right hon. Friend knows, we have set out our plans to make alcohol duty simpler and fairer—a change that is long overdue. That includes a new relief for draught beer, small producer relief for craft cider makers and the end of the higher rate for sparkling wine. I am listening to the sector and I have visited businesses to hear for myself, to make sure that the reforms work in practice.

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

T1. If he will make a statement on his departmental responsibilities.

Oral Answers to Questions

Debate between Helen Whately and Rachael Maskell

Tuesday 2nd November 2021 Commons Chamber

[Helen Whately]

We are delighted that we are introducing the draft relief to support the on trade for people purchasing drinks in pubs and hospitality venues. We will consult on the details, including keg size. We will also bring forward the technical changes to small brewers relief, which my hon. Friend asks about.

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

The pretence has to stop. The Budget was climate-illiterate, with just £7.8 billion of new money given to climate and nature mitigation to reach the 2024 target, when £62.9 billion is required. How will the Chancellor close that gap, or is the Prime Minister’s performance at COP26 simply a façade?

NHS Update

Debate between Helen Whately and Rachael Maskell

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.

National Health Service

Debate between Helen Whately and Rachael Maskell

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.

--- Later in debate ---

[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)

Debate between Helen Whately and Rachael Maskell

Monday 12th July 2021 Westminster Hall

[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.

Social Care Reform

Debate between Helen Whately and Rachael Maskell

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.

Down Syndrome Awareness Month

Debate between Helen Whately and Rachael Maskell

Thursday 22nd October 2020 Commons Chamber

[Rachael Maskell]

I appreciate that this is a really sensitive topic, but we know that coming into the world is a real challenge for somebody with Down’s syndrome. Will the Minister go away and look again at the conversations that are had with parents who are diagnosed in pregnancy with somebody with Down’s syndrome and see how we can change that conversation, so that people can understand the positivity of bringing up a child and raising someone into adulthood with Down’s syndrome?

[Helen Whately]

The hon. Member makes a really important point. It is clearly a very difficult and sensitive topic, but it is absolutely the case that if, during pregnancy, any abnormality is detected or suspected there should at no stage be any bias towards abortion, which is what, as I understand it, she is referring to. I want to make that absolutely clear. It must be the case that all health and care staff involved in the care of a woman or a couple who might be considering the termination of a pregnancy must adopt a non-directive, non-judgmental and supportive approach. That absolutely should be the case throughout our health system. Should anyone experience anything different and find that that is not the case, they should raise it, because women and couples should be supported in a positive way so that they can make the right choice for them. I am choosing my words carefully given that this is a very sensitive topic.

While I have the opportunity, I want to talk briefly about the importance of the Oliver McGowan mandatory training in learning disability and autism, which the Government have committed to rolling out to make sure that all health and social care staff receive training in learning disabilities and autism. That is really important to make sure that people with those conditions get the right and appropriate care when they are in the health and care system, including, I should say, for end-of-life care, making sure that do not attempt CPR—cardiopulmonary resuscitation—orders are used appropriately.

In the light of the pandemic, one thing that has been raised with me, particularly for those who are caring for those with disabilities, is the importance of day services and respite services. I have been working really hard, including with the Social Care Institute for Excellence, on guidance to support the reopening of day services and to encourage local authorities to make sure that those are reopened.

To conclude before we are out of time, I am so glad that we have had this debate and been able to talk about the contribution that those with Down’s syndrome make to our society, and, to use a phrase from the excellent speech by the hon. Member for East Kilbride, Strathaven and Lesmahagow, to have made our contribution to changing the narrative. It is crucial that we should celebrate the achievements and contributions of those with Down’s syndrome to our society, so we have been and are taking action to support those with disabilities, including Down’s syndrome, but I believe that we can always do more and go further. So I say, let’s do that. Let’s do more and go further to support people with Down’s syndrome to achieve their dreams.

Question put and agreed to.

Oral Answers to Questions

Debate between Helen Whately and Rachael Maskell

Tuesday 6th October 2020 Commons Chamber

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

What recent assessment he has made of the effectiveness of the NHS Test and Trace service.

[The Minister for Care (Helen Whately)]

NHS Test and Trace launched in May. Four months later, more than 150,000 people who have tested positive for covid-19 have been contacted, and 450,000 of their contacts have been reached so that they can self-isolate. We have tested more than 7 million people at least once and many, such as care home workers, more than once. Rapid expansion brings with it challenges. Working with local authorities, we will continue to improve test and trace, as it is an important part of our armoury to defeat this virus.

--- Later in debate ---

[Helen Whately]

There was quite a lot in that question. One thing I will say on schools is that enabling our children to continue to go to school is very much part of the whole strategy that we are using to tackle and suppress coronavirus, because education is so important. On the specific test and trace system to which the hon. Member refers, the Secretary of State spent an hour and a half in the Chamber yesterday answering colleagues’ questions about the performance of that system.

[Rachael Maskell]

In the light of the fact that infection levels in York have risen from 63.1 cases per 100,000 to 143.9 cases per 100,000 in just the past seven days, the local public health team is working with the university and local labs, and together they have put together a programme where they can test, process the testing and do contact tracing. This is a testing service that works for York, with test results the next day and tracers who understand local population flows. Will the Minister put the necessary resources in place to enable them to do their work and allow this to happen, because this is surely the game changer we need to beat this virus?