UK Rare Diseases Framework

Maria Miller Excerpts

Wednesday 24th March 2021 Westminster Hall

[Mrs Maria Miller (in the Chair)]

I remind hon. Members that there have been some changes to the normal practice, in order to support the new hybrid arrangements. Timings of debates have been amended to allow technical arrangements to be made for the next debate, so there will also be suspensions between each debate. I remind Members participating physically and virtually that they must arrive at the start of the debate in Westminster Hall. Members are expected to remain for the entire debate. I must also remind Members participating virtually that they are visible at all times, both to each other and to us here in the Boothroyd Room. If Members attending virtually have any technical problems, they should email Westminster Hall Clerks. Members should clean their spaces before they use them and before they leave the room. I remind Members that Mr Speaker has stated that masks should be worn in Westminster Hall except, of course, when speaking.

There are no more notes from me but a reminder that we shall move to winding-up speeches at about 5.28, and after the first speech I am afraid I shall have to put in a formal three-minute time limit, because it is a heavily subscribed debate.

[Liz Twist (Blaydon) (Lab)]

I beg to move,

That this House has considered the implementation of the UK Rare Diseases Framework.

It is a pleasure to serve under you in the Chair, Mrs Miller. About one in 17 people will during their lifetime be affected by a rare condition. Around 70% of such conditions begin in childhood and are lifelong. Genetic Alliance UK estimates that rare diseases are responsible for about one third of infant mortality in the UK. Those living with a rare condition can face significant challenges in getting a diagnosis, getting access to treatment, and receiving co-ordinated care, as well as challenges with employment, education, social life and mental health.

The UK rare diseases framework, which was published earlier this year, presents an opportunity for the rare diseases community. There is hope that the framework will enable people living with rare, genetic and undiagnosed conditions to get access to the appropriate care and the treatment that they need to manage their condition. However, we have been here before. In 2013 the UK strategy for rare diseases was published, with the promise that no one would be left behind just because they have a rare disease. When the strategy expired last year, people living with rare conditions were confused and disappointed. Although the strategy had made some progress, it had failed in its commitment to transform the lives of all those affected by rare conditions.

A major factor that prevented the true potential of the strategy from being realised is the long delay from the Department of Health and Social Care or NHS England in developing and publishing an implementation plan. The strategy was published in 2013, yet an implementation plan for England was delivered only in 2018. Not only did that prevent progress in England; it also stymied developments in the devolved nations, which were unable to collaborate effectively without a plan. As yet, the Department of Health and Social Care and NHS England have not published the outcome of the strategy. If we are to learn from the mistakes of the past, we must evaluate what happened with the strategy. Will the Minister comment on whether the Department of Health and Social Care and NHS England will in fact report on the outcome of the strategy?

The UK rare diseases framework is the beginning of a new chapter. For it to be implemented effectively, the Department of Health and Social Care and NHS England must work together to deliver a timely and comprehensive action plan. That action plan is needed now more than ever because the rare diseases community has been waiting long enough for improvements in care and treatment. The pandemic continues to bear heavily on the health and wellbeing of those with rare conditions, who are among the most vulnerable to covid-19 impacts. There is a gap in detailed policy to drive improvements for people living with rare conditions in the UK, until action plans are published to implement the framework.

The framework covers four key areas and seeks to make progress. The first priority is to help patients to get a final diagnosis more quickly. On average, rare disease patients wait four years to receive a diagnosis, with some waiting over 20 years. For people with a rare condition, it is often a long journey, frequently with several misdiagnoses, until a final correct diagnosis is reached. Often this journey is labelled as the diagnostic odyssey. The framework describes what is already happening to improve diagnosis, but it does not talk about improving the screening service for people living with rare conditions. The UK National Screening Committee currently screens for just nine conditions using the heel-prick test. That compares poorly with many European countries: Italy and Iceland screen for more than 40, Poland and the Netherlands screen for more than 30, and Hungary, Slovakia and many others screen for more than 20 conditions.

Earlier this month, the National Institute for Health and Care Excellence approved access to a new gene therapy for spinal muscular atrophy. NICE said that for some babies who are diagnosed before they have symptoms, it might come close to being a cure. For it to have the chance to be a cure, however, we need to identify the babies before they begin to be affected by the condition. To do that, we need newborn screening for spinal muscular atrophy. We need joined-up thinking that allows a screening programme to be developed in parallel as such medicines come over the horizon. Will the Minister confirm whether we will increase the scope of newborn screening in the UK or make changes to the UK National Screening Committee’s processes?

The framework also talks about Genome UK and the NHS genomic medicine service helping patients to get a final diagnosis more quickly, but it does not talk about how patients will access such services. The framework recognises that people with non-genetic conditions needs to be diagnosed through other means. We will need an action plan that sets out a realistic way to improve this, and we will need to demonstrate that the system becomes better at diagnosing everyone, not just those who are found through genome sequencing. Can the Minister confirm that that will be done?

Moreover, the framework does not talk about what happens after a diagnosis is delivered. We cannot abandon people after we have given them their diagnosis. My final point on diagnosis is this: what about the people who are stuck on the diagnostic odyssey? Do we know how many people have been waiting for five, 10 or 20 years for a diagnosis from the NHS? Will we track such people? Will we monitor whether everyone is receiving equitably the tests to which they are entitled? Will the Minister please comment on that?

The second priority of the framework is to increase awareness among healthcare professionals of rare diseases. People affected by rare conditions meet many healthcare professionals on their journey to find a diagnosis, and beyond while they live with their rare condition. For some it is a positive experience; for others it can be particularly challenging. This year, Genetic Alliance UK received an inquiry from an individual whose GP had told them that they could not possibly have the genetic condition that they were concerned about, because it is just too rare. Any individual clinician cannot be expected to know about all rare conditions, but they can be empowered to understand how to handle such cases. The framework does not address in detail how it will increase awareness among healthcare professionals of rare diseases. It does not provide details of how education programmes will be delivered, nor does it explain in detail how success will be measured. What measurements will be put in place to ensure learning for healthcare professionals in the NHS? Will there be a survey of experience now and in the future, to demonstrate improvement? Will that be included in the English action plan?

When clinicians do not engage with an individual who has a rare condition in order to understand their diagnosis and ensure that care is compatible with their needs, it can and has led to life-threatening situations. One way to prevent such situations from occurring is by providing rare disease patients with alert cards, which include information about the patient’s rare disease and any particular aspects of the treatment of that rare disease that need to be taken into account in providing care. In January 2018, NHS England promised that all rare disease patients in England would have access to a rare disease alert card. May I request an update from the Minister on alert cards specifically? How many rare disease patients have been issued with an alert card?

The third priority of the framework is to improve co-ordination of care. Many patients have numerous professionals involved in their care and therefore it is essential that there be co-ordination and communication among healthcare professionals, their patient and the family. The framework does not address how care co-ordination can be mainstreamed within rare condition care in the NHS. There are no details as to how the challenges of ensuring continuity of care during the complex transition between rare condition services might be addressed. Again, how will success be measured? Will there be outcome measures demonstrating increased care co-ordination services in the NHS, and will there be a survey now and in the future to demonstrate improvement in the experience of people living with rare and genetic conditions?

The final priority of the framework is to improve access to specialist care, treatment and drugs. Only about 200 medicines are specifically available for rare conditions, and fewer than that are available on the NHS now. Small patient populations and accelerated market authorisation mean that rare disease medicines can rarely have sufficient evidence to meet the expectations of health technology assessors in the UK. Few life-saving treatments are reaching rare disease patients, which means not only that the UK is falling behind other European nations in terms of treatments available, but that patients and their families can be left in the dark, unsure of what is next.

We have extremely frustrating situations such as that faced by families affected by phenylketonuria, who, 12 years after marketing authorisation for the drug, are not receiving access to Kuvan, despite the Prime Minister’s promises to work on the issue and the treatment being available in 24 European countries. Again, the framework does not talk about how success will be measured. Will there be outcome measures demonstrating increased access to specialist care, treatments and medicines, and will there be a survey now? Will the Minister comment on that?

My final point is this. Understanding the experiences and preferences of people affected by rare conditions is fundamental to providing care and treatment and to ensuring that support, information and services are available and targeted to meet needs. The national conversation on rare diseases on which the UK rare diseases framework is based does not reflect the whole rare disease community. It is important that the English action plan is created in consultation with a more diverse and inclusive group, so that we can understand and meet the needs of all those affected by rare, genetic and undiagnosed conditions.

I want to finish by talking about something that happened yesterday. I want to mention Norman Clayton, who watched Prime Minister’s questions last week and heard me ask my question on access to Kuvan for those with PKU. Norman is 91 years old and was moved, after all these years, to contact NSPKU—the National Society for Phenylketonuria—and tell us about his daughter, Denise, who was born in 1958, before newborn screening, and whose PKU was diagnosed late. Despite the best efforts of Norman and his wife, Denise’s development suffered and she disappeared off the radar of the NHS. She still requires a huge amount of care, because her condition was not recognised from birth. That story speaks to so many rare diseases and to the need to get the implementation of this framework right.

[Mrs Maria Miller (in the Chair)]

We now move to a three-minute time limit, to help as many hon. Members as possible to participate.

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[Tom Randall (Gedling) (Con) [V]]

It is a pleasure to serve under your chairmanship, Mrs Miller. I congratulate the hon. Member for Blaydon (Liz Twist) on securing the debate. It is a welcome debate and an opportunity to discuss those rare diseases that, by their very nature, do not have the large advocacy organisations to speak about them. This week I received a mailshot from one of the UK’s leading cancer charities. While that is a welcome and worthwhile effort, rare diseases—those that affect fewer than one in 2,000 people—do not have those resources and it is important that we speak about them.

I welcome the publication of “The UK Rare Diseases Framework”, which has four priorities. I will speak briefly on priorities 2 and 4. Priority 2 is to increase awareness of rare diseases among healthcare professionals, which I think is crucial. I am co-chair of the all-party parliamentary group on axial spondyloarthritis, which is not a rare disease—it affects one in 200 people—but the eight-year delay in diagnosis has been attributed, in part, to a lack of knowledge by healthcare professionals. I fully support any increased awareness of rare diseases.

Priority 4 is to improve access to specialist care, treatments and drugs. As others have said, I have seen that myself with phenylketonuria, which I had not heard of until I met the parents of Hurley, one of my youngest constituents. They came to see me to discuss Hurley’s condition. PKU affects fewer than one in 10,000 babies. As we have heard, it means that the body cannot process protein, which results in a severely restricted diet.

The drug Kuvan has been available but was not widely licensed despite promising results. I welcome the news that Kuvan is now available, but it is not available for over-18s. That causes understandable concerns not only for adults, but for those in their late teens who are approaching a point when their treatment will become unavailable. I will add my name to those calling for the wider licensing of Kuvan for those with PKU.

This is a welcome debate and there is a responsibility on all MPs to speak up for their constituents who have rare diseases, to make their case heard. I look forward to continuing to do so with colleagues.

[Mrs Maria Miller (in the Chair)]

Order. After the next speaker, I will move to a two-minute time limit, in an attempt to get more speakers in.

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[Paul Bristow (Peterborough) (Con) [V]]

It is a pleasure to serve under your chairmanship, Mrs Miller. I draw attention to my entry in the Register of Members’ Financial Interests.

NICE was established to determine cost-effectiveness, and it quickly became the best at this in the world. Given the pandemic, the importance of the life sciences sector to our country has never been clearer. If we want to retain our global reputation, however, NICE needs to alter the way it works. The rare diseases framework should be seen in this context. Its themes of pioneering research and being a global player are the right ones. I am encouraged that NICE recognises the challenges we face. That said, I am not yet convinced that NICE has got to the right place on the detail. Unless we get it right, we risk reducing the number of new medicines arriving to treat patients.

Within the framework, priority 4 is all about improving access to specialist treatments. The review has identified the need to change and update the discount rates, but less helpful are the suggestions in the current process review consultation on how we evaluate new health technologies. Essentially, there are two routes: the regular single technology appraisal process; and the highly specialised technology option, which is far more flexible. Medicines for rare diseases need that flexibility and the higher threshold for cost-effectiveness. If they do not meet the HST criteria, new technologies are stifled. NICE is risking needlessly complex and convoluted criteria that will not allow for transparency on why particular medicines are put into the programme. I hope it will register the concerns expressed by the ABPI and others.

The Medicines and Healthcare Products Regulatory Agency is talking about new pathways to licences. Such work needs to be joined up and supported by NICE’s processes. Early engagement is positive, but NICE must avoid premature decisions, including about the commercial aspects and pricing.

[Mrs Maria Miller (in the Chair)]

To ensure that we can get all Members in, the Minister has very generously given some of her time, so I hope that I can bring in every Member on the list.

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[Liz Saville Roberts (Dwyfor Meirionnydd) (PC) [V]]

I, too, extend my congratulations to the hon. Member for Blaydon (Liz Twist) on securing the debate and my gratitude to the Minister for the extra time.

The devolved nature of health and the need for proper planning and co-ordination between the nations of the UK have been brought into sharp focus as a result of the covid-19 pandemic. For people living with rare diseases, planning and co-ordination within health systems is key, as they face additional barriers to receiving a diagnosis and treatment, compared with those people who are suffering more common illnesses. In Wales, around 175,000 people will be affected by a rare disease at some point in their lives. A Welsh action plan that commits to proper joint working and collaboration between the four nations will be imperative in ensuring the best outcomes for people living with rare and genetic conditions in Wales.

That should involve data sharing between Wales’s Congenital Anomaly Register and Information Service and other rare diseases registries in the UK to help researchers identify non-genetic rare diseases that are not picked up through screening and genomic testing. It would also involve better cross-border co-ordination for care and treatment between Wales and the other nations, including education for clinicians and healthcare staff.

There is a question as to how the Welsh plan will integrate with health entities with a UK-wide remit, and challenges associated with decision making. I urge all national Governments to commit to publishing their action plans within 2021 so that we avoid delays in implementing the framework, to ensure that there is equitable treatment for those living with rare conditions.

I would like to mention my constituent Mark Edwards of Llanegryn, who has proved to be such an excellent ambassador for PKU, and to add my voice to the call for wider licensing of Kuvan.

[Mrs Maria Miller (in the Chair)]

We now move to the Front-Bench speeches. I call Marion Fellows.

Maternal Mental Health

Maria Miller Excerpts

Wednesday 10th March 2021 Westminster Hall

[Mrs Maria Miller (Basingstoke) (Con)]

I commend the hon. Member for Richmond Park (Sarah Olney) for securing the debate, because the three quarters of a million women who have given birth during this pandemic have not only experienced all the challenges that every woman experiences when they give birth, but have had those problems magnified. Other Members have already set out issues around isolation, anxiety and the need for proper, professional support, as identified by the excellent piece of work done by the Digital Engagement Team for the hon. Lady, which all of us who have been new mums can really relate to. I can only imagine how much more these issues can affect people when they have no family members to call on and no mothers’ group to allow them to pick up personal experience from others who have gone through it before them.

Outside of the pandemic, around one in five women experience perinatal mental health problems, which impact not only them but their children, and as my hon. Friend the Member for East Worthing and Shoreham (Tim Loughton) said, that can cost the economy some £8 billion every year. I will add to the debate the conditions that create a higher likelihood of mental health problems emerging in the first place, which according to research is particularly stressful life events.

We know that, during the pandemic, people have been highly anxious—far more than they might have been otherwise. Indeed, some research suggests that around three in four pregnant women have had significant anxiety, and up to 40% have experienced depression. One of the biggest anxieties for any new parent has to be money—finance, income; making sure that they can care for their new family. Most families now have two working parents, and families depend on both incomes, so the fact that more than 50,000 pregnant women a year suffer discrimination that leaves them with no option but to leave their job should sound alarm bells, not only for our economy, but for its potential to trigger mental health problems, depression or anxiety.

Work by organisations such as Maternity Action and Pregnant Then Screwed shows worrying increases in reports of pregnant women losing their jobs during the pandemic, and we know that more women have been impacted, in terms of job loss, during the pandemic than in other similar economic events. The reported figure of 50,000 pregnant women each and every year leaving their jobs is likely to be the tip of the iceberg, because as well as those reporting leaving their jobs, there will be many more who are silenced from speaking out by non-disclosure agreements.

My right hon. Friend the Minister has done so much to support new mothers, but some women are still let down in the workplace, so as part of this debate I urge her to consider employment policies too, particularly given the impact of coronavirus on women’s employment. No matter how good my right hon. Friend is at her job, in terms of putting support in place, if pregnant women are concerned about losing their jobs, even if they do not do so—and being pushed out of work is not uncommon in the workplace when women become pregnant—the job of the Department of Health and Social Care will be severely undermined if these issues are not addressed.

Other countries have looked at this closely, and I believe we can learn from their experiences. Germany, with a similar economy to ours, prohibits making pregnant women and new mums redundant, for the good of women, their children and their families. I have put into a ten-minute rule Bill the idea of adopting the German laws here in the UK, and I hope that my hon. Friend the Minister will look at it to see whether she could lend it her support.

My final point is that mental health problems on the arrival of a child do not just impact women. Up to one in four fathers may experience mental health problems in the year after the birth of a child. It can be difficult for fathers to manage the transition, and we need to ensure that support is there. In other countries, shared parental leave policies, on a use-it-or-lose-it basis, have been proven to help fathers with that transition. Will the Minister look at why we are still awaiting action following the review in the UK of this policy, which would explicitly help fathers to tackle these difficult issues?

My hon. Friend the Minister has done so much, but she needs her colleagues in the Department for Business, Energy and Industrial Strategy to do more. It is no good saying that we have good maternity protections when the Government know that probably 50,000 women a year lose their job because of how they are treated in the workplace. I ask the Minister to speak to her colleagues in the Department for Business, Energy and Industrial Strategy to look at effective broader policies impacting on pregnant women at work, because one of the most effective maternal health policies that the Government could adopt is stopping women being made redundant in the first place.

[Sir Edward Leigh (in the Chair)]

Order. Because Members have gone on beyond five minutes, I have to reduce the time limit again, otherwise not everybody will get in. The time limit is now four minutes.

Covid-19: Vaccinations

Maria Miller Excerpts

Monday 11th January 2021 Commons Chamber

[Nadhim Zahawi]

The people of Strangford will be pleased to hear that the hon. Member’s mother has got her first a dose of the vaccine. This is an important message to send to the whole country: if you are called up and have an appointment to get the vaccine, please turn up. This vaccine can protect your life. It can protect somebody else’s life. It is a shame to not turn up if you have booked an appointment. The NHS in England has made sure that the hospital hubs and primary care networks that have been vaccinating, and now the national vaccination centres, have on speed dial the care home workers and those on the frontline of the battle against covid who are in the JCVI’s top four cohorts, so that they can get them in as quickly as possible and not a single dose is wasted.

[Mrs Maria Miller (Basingstoke) (Con) [V]]

I thank my hon. Friend for his incredible tenacity on such an important project. Our local vaccine centre in Basingstoke serves six primary care networks across Hampshire, and under his plan, 20,000 over-75s should receive their first vaccination at this hub from our army of volunteers and local NHS staff in the next 35 days. Can my hon. Friend say how the large difference in patient numbers at each hub is factored in when vaccine supplies are dispatched? I reiterate the need for clinical commissioning group-level data to monitor progress. Can he more urgently reconsider the priority given to teachers, please?

[Nadhim Zahawi]

I think I dealt with the question of teachers earlier, which is incredibly important. Phase one is to focus on those who are most vulnerable to dying from this disease. As soon as we get through that to phase two, teachers and other frontline services, including police officers and others, will be absolutely uppermost in our minds and those of the Joint Committee on Vaccination and Immunisation, which helps us with that prioritisation.

My right hon. Friend is absolutely right to raise the issue of vaccine supply, and I know that her local vaccination service has done a tremendous job. There was a slight hiccup, if I can describe it as that, in making sure that they were recognised as six primary networks in the system. We rectified that, and I assure her that the volumes, certainly those of which I have line of sight, will mean that the service will receive plenty of vaccines to hit that target by mid-February of offering the top four cohorts the opportunity of the vaccine.

Public Health

Maria Miller Excerpts

Wednesday 6th January 2021 Commons Chamber

[Mrs Maria Miller (Basingstoke) (Con)]

All Governments have to make difficult decisions, but no other in peacetime has had to restrict our freedom so profoundly, and our role as MPs is to scrutinise that. I thank my right hon. Friend the Secretary of State and his team for the briefings with medical experts provided to all Members to give professional interpretation of the data. However, every person we represent wants to know that the action that is being taken today is absolutely necessary and that there is a clear way out so that people can get their lives back as soon as possible.

The clear way out that my right hon. Friend has identified is the vaccine roll-out. The fact that the UK has led the way in getting two vaccines approved and has already had more people vaccinated than all the countries in Europe put together is a significant achievement. Paragraph 3(2) of the regulations therefore needs some clarification, because it changes the end date of the regulations to 31 March of this year, beyond the date when experts estimate that all those in the most vulnerable groups will have been vaccinated. I understand the need for caution, but will that caution give room for delay? I know that that is not the Secretary of State’s intent, so will he come to the House regularly to update us on the roll-out of the vaccine programme so that we can scrutinise, raise issues that we encounter with him and perhaps identify more unnecessary red tape that needs to be removed?

With regard to the sequencing of the vaccination programme, the Government need to look again at the priority given to vaccinating teachers in our communities. We know the damage done to our children’s education through this disruption and the pressure on family life when schools are closed so, in order to protect the ability of schools to reopen and continue to be open in the coming months, and to protect children’s futures from more disruption, we need to think about putting teachers into the priority group.

I wholeheartedly thank the whole of our North Hampshire NHS team, our local trust, Hampshire County Council and our amazing local borough council for the incredible work that they have done to help to keep my community safe in the recent months. It is with a heavy heart that I support these measures, but we can be in no doubt at all that they are essential today.

Covid-19

Maria Miller Excerpts

Wednesday 11th November 2020 Commons Chamber

[The Minister for Health (Edward Argar)]

I beg to move,

That this House has considered covid-19.

Last Wednesday, this House came together to vote in favour of a new time-limited set of national restrictions across England—our strategy to suppress the virus, support the economy, education and our NHS until a vaccine can be deployed, and in doing so, to ensure that the NHS was not overwhelmed. It is clear that, in tackling this virus, there are no easy or simple choices for anyone. While Members may differ in the perspective they take on what is the right balance to strike, as we would expect in our open and vibrant democracy, it is important to say that it is clear that all Members of this House share a common objective, which is to beat this disease and see our country flourish once again. As Members will know, I entirely respect and recognise the sincerity and strength of feeling of all Members of this House on this most difficult issue, irrespective of the stance they take on it.

Difficult though they are, entailing further sacrifices, the steps that this Government and this House took last week were the right ones, because the alternative of not acting would have been far worse. Throughout this pandemic, we have always sought to base our decisions on evidence, data and scientific advice, but we must also recognise that this is a disease about which we have learnt more every day and about which we knew nothing a year or so ago. Throughout, we have always been willing, and we must remain willing, to reflect on and adapt to changing scientific evidence and scientific debate and to move with that debate.

The evidence we faced last week before the Prime Minister’s announcement was stark and changing rapidly: an R rate above 1 in every region and more than 100 cases per 100,000 of the population. The data indicated that the number of people in acute hospital beds in England was due to exceed NHS surge capacity in the forthcoming weeks and, in some hospitals, the number of patients was already higher than at the peak of the first wave. For me, one thing was abundantly clear: our NHS was at risk of seeing demand exceed capacity if nothing was done.

There was a sharp acceleration in infections in September and October, as was the case across Europe and, as we know, many of those infections lead to hospitalisation further down the line, with a roughly two-week lag. As Sir Simon Stevens, the chief executive of the NHS, recently set out, at the start of September, there were around 500 people hospitalised with covid. By the start of October, there were around 2,000 people hospitalised with covid and, by the start of November, that figure had sharply increased to around 11,000.

We were already at the point where hospitals were becoming very busy, and that was before the normal winter and flu-related demand. It appears that, with the new treatments that are being developed, more people are likely to walk out of hospital after treatment than sadly was the case during the first wave, and I am thankful for that, as I am sure the entire House is, but the fact remains that those people still need hospital treatment. Each day the R rate remains above 1 is another day that cases rise, with more hospital admissions, more patients deprived of other types of care and, tragically, more deaths.

[Mrs Maria Miller (Basingstoke) (Con)]

My hon. Friend is making a very important point about the impact on hospitals. Does he agree that the knock-on impact on elective surgeries and care and treatment in our hospitals means that unless we keep the coronavirus rate under control, we could see other people with non-covid illnesses being adversely impacted in this wave of the pandemic as they were in the first wave? Indeed, in my constituency, we saw a 26% increase in deaths from non-covid illnesses in the first nine months of this year.

[Edward Argar]

My right hon. Friend is absolutely right. In taking the action we are to protect the NHS, we are of course also seeking to suppress the number of people who need hospitalisations to maintain the availability of those hospital beds for other people in dire need, exactly as she alludes to. I have to say to those who question the impact of this disease or its seriousness when someone gets it that I am reminded—as I suspect other Members will be—of the extraordinary dignity and suffering of the Lewis family in the Rhondda, who were on “Channel 4 News” and various news outlets last week. Mr Lewis had lost his wife and his two sons in under a week to this disease. It was a truly dreadful story, and I have never seen a more dignified man than Mr Lewis when he was talking about it.

The latest R rate is between 1.1 and 1.3, so it was essential to take action to protect our NHS and to enable us, as my right hon. Friend said, to maintain vital services for those without covid that sadly had to be paused in the first wave. From the Dispatch Box, I would like to take the opportunity once again—every time we are here it is right we do it—to thank all our staff in the NHS and care sectors for the incredible work they have done and continue to do in the face of these unprecedented challenges.

As I have set out, the virus remains a serious threat. We recorded more than 20,000 positive cases yesterday. Average daily hospital admissions currently stand at 1,366 and, sadly, yesterday we recorded more than 500 deaths—the highest death toll since mid-May. It is a painful reminder that the real battles are not in fact fought here in this Chamber, but in our hospitals up and down the country and by those who are suffering from fighting this dreadful disease. But in this Chamber, there are steps we can take that I believe will help them in that battle, and I believe that we were therefore right to act as we did.

Despite the seriousness of our current situation, these measures are time-limited. They legally expire 28 days after they were passed by the House—on 2 December. At that point, we will look to return to the tiered system, using local and regional data and trends to determine our response and adapt to local needs.

The measures in place are also quite different from last time. Schools and universities rightly remain open to avoid further disruption to education. People can establish childcare bubbles, take unlimited exercise and meet one person from a different household outside. More than that, however difficult it has been, I believe that we as a nation have made huge strides to better overcome the challenges that these measures bring. However, I am acutely aware that for many people in our country any restrictions are still incredibly difficult, especially this second time around. They are difficult for our NHS and care home staff, who have shown such resilience but still face a difficult winter ahead; for the families who have not been able to see their loved ones and once again cannot meet them in the ways they would wish to; and for individuals who live alone and are still, despite support bubbles, having to cope with the challenges posed by these restrictions.

It has also, of course, been an especially tough time for the businesses that have had to close their doors just as they were coming back, and that is why we are providing an unprecedented package of economic measures, with more than £200 billion of financial support since March to protect lives and livelihoods in every region and nation of the United Kingdom. The package was recently described by the International Monetary Fund as

“one of the best examples of co-ordinated action globally”.

Of course I feel deeply for those businesses and individuals, and I appreciate the position they find themselves in, especially when they have done all they can to do the right thing. That was why it was important to extend the furlough scheme and to provide further support in extending the scheme for the self-employed.

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[Mrs Maria Miller (Basingstoke) (Con)]

Our thoughts are with everyone who has lost a family member or friend to this dreadful virus, and we thank people for speaking up on their behalf. I would like to take this opportunity to thank and pay tribute to all the emergency workers, NHS workers, teachers, school staff, local authority workers, volunteers and local charities who have done an amazing job of work over the past nine months across the country and particularly in my constituency. They face more months of having to deal with the reality of this virus. Mass testing and a vaccine provide notes of optimism, but they will not stop the spread of the infection here and now.

It is particularly difficult for us to debate this issue in this Chamber, because the rates of infection are so very different in different areas of the country. Indeed, I have been contacted by my own constituents, asking why the regional approach was set aside in favour of a lockdown: well, I am afraid that in my area, we are starting to see the reason why. Although the infection rates are now at 135 cases per 100,000—rates that are infinitesimally lower than some of the areas in Hull, as I know from speaking to colleagues—and we have just 23 people in our local hospital, we are starting to see those rates go up. Unless we follow with great fastidiousness the restrictions that are in place, I fear that we will see the sorts of rates that have been generated in other parts of the country—all the way across the country, indeed, down to the south-east.

I know that many people are concerned about the decision to reintroduce lockdown across the country, and the implications for businesses, individuals and families, but we cannot underestimate this virus or the exponential way in which it increases. The one thing that we did learn from the first wave is the importance of the NHS being able to continue to treat everybody who needs urgent care, not just those with coronavirus, which is a point I made to the Minister during his opening statement. It is tragic that so many people died in the first nine months of the year—far more than would normally have been the case. As I mentioned to the Minister, in my constituency we saw a death rate increase of 26% compared with the same period in the previous year. We have to make sure that people who are ill for other reasons continue to seek treatment, but they will not be able to do so if there is such a rapid rate of increase in the number of people who require hospitalisation or more intensive treatments. That is why we need to make sure that this lockdown works, and that is why the Government and the Minister are taking these very difficult decisions. I urge people who have contacted me and other Members about this issue to understand that that is why the lockdown is so crucial now.

My thoughts are with those who have lost members of their family, but also with those who face a huge job of work during the winter months in keeping our schools and hospitals open for the future. Now is the time that we can take action, and we need to do so.

Health Protection (Coronavirus, Restrictions) (Bolton) Regulations 2020

Maria Miller Excerpts

Tuesday 29th September 2020 General Committees

[Jo Churchill]

I understand and recognise how, as the hon. Member for Nottingham North said and the hon. Members for Ellesmere Port and Neston (Justin Madders) and for Warwick and Leamington have said on many occasions, there is a willingness to work together. They want us to get ahead of the curve, as it were. I understand why that is, but we introduce such regulations under section 45R of the Public Health (Control of Disease) Act 1984 because we need to move at speed. These are public health emergencies rather than anything to do with the broader setting.

We recognise the impact of localised restrictions on local businesses. That is why we provided Bolton Metropolitan Borough Council with £57,980,000 of business support grant funding. Businesses have access to a large number of support schemes including discretionary grants and tax breaks because there is a need to protect both people and the economy. The measures we are taking in Bolton seek to find balance on that difficult tightrope. No one wants to put restrictions on people’s lives.

The hon. Member for Nottingham North alluded to yesterday’s debate. One thing I took from it is how the power of many of the speeches came from the impact on people’s lives from a human capital point of view and how that spins out. As I said on the Floor of the House yesterday, we are working hard to move things forward and have more dialogue. I appreciate the articulation of his willingness to work with us.

[Mrs Maria Miller (Basingstoke) (Con)]

It is a great pleasure to see you in the Chair, Ms Nokes. I am sure hon. Members do not need their attention drawn to the fact that the Minister was on her feet in the Chamber 12 hours ago. It is astonishing to see her here doing a great job of presenting the regulations to the Committee.

I want to press the Minister on working together. The hon. Member for Nottingham North raised an important point about the timeliness of consideration of legislation. There is obviously a huge amount of secondary legislation at the moment. Could the House of Commons and Parliament be doing more to support the Government to that end? Should we press the authorities to do more?

[Jo Churchill]

I thank my right hon. Friend for her intervention, which I am sure the Whip, my hon. Friend the Member for Erewash, will take away through the usual channels. Everyone wants to see these things succeed so that we get out of this covid-tinged world and into something more akin to what we are used to.

The hon. Member for Nottingham North asked me about the restrictions. It is too early to know whether they have bedded through. One of the challenges is that if we leave things as they are when we see the spike rising, the argument is that we are too late, but if we go too early, the argument is that we are impinging on people’s lives. One of the big problems with the disease is that, when we see the prevalence rise, there is a 10-day lag before we see the number of people entering hospital rise and then a further 10-day lag before we see the number of deaths rise.

I can report that, unfortunately, from this week, the positivity rate is 241.8 per 100,000. The next review is on 9 October.

These are challenging times. The information I read out was based on local intelligence from the University of Bolton, which knows its own community. In many debates I have been challenged about getting granular and getting local. This is a fine example of where the director of public health and other local bodies are helping us drive the right solutions locally. For my money, that is the right way to proceed.

We recognise that, for many, self-isolating for 10 to 14 days to avoid passing on the virus is a challenge. The Prime Minister announced that, from 28 September, we will be supporting those on low incomes by paying them £500 if they cannot work from home or have lost income as a result of the requirement to self-isolate. That needs to be fed through to see if it also has an effect. The requirement to self-isolate became law yesterday and there are penalties for those who breach the rules. There will also be penalties for employers who fail to support the requirement, for example, by threatening self-isolating staff with redundancy if they do not come to work. We hope that will send a clear message about the importance of self-isolating.

We take Public Health England’s report on BAME communities extremely seriously. However, there is still work to do in understanding how the disease affects different groups, including BAME communities, as well as the broader communities we are working with. Expecting a reliable result within a week or 10 days is difficult in this situation. Other factors, such as comorbidities and occupational risk, mean that every situation is more complex than it might seem at face value. We are investing a large amount in medical and clinical research to get a better understanding. In the meantime, we are making it a priority to safeguard BAME workers in the NHS who might be at risk and in need of specific treatment, while making sure that all workplaces have been risk-assessed.

The decision to impose even more stringent restrictions in Bolton is based on a number of factors and local intelligence. They include not just the positivity and incidence rates but the extent of high-risk behaviours. The next review will take place on 9 October.

I conclude by thanking the people of Bolton and particularly its NHS and care workers and all the city’s key workers for their ongoing hard work to keep our vital services running and save lives through this difficult time. I urge everyone to get behind hands, face and space, so we can eradicate the virus from our country as soon as possible.

Question put and agreed to.

Covid-19

Maria Miller Excerpts

Monday 28th September 2020 Commons Chamber

[Mrs Maria Miller (Basingstoke) (Con)]

The unprecedented events that stopped us in our tracks six months ago have led to this wide-ranging debate today. The coronavirus has had an effect on almost every aspect of our lives, and the debate is important for that reason. Every single death from coronavirus is a tragedy and every excess death as a result of the measures that were taken is a tragedy as well. The good news is that, thanks to the hard work of our medics, we have a better understanding of how to treat the virus, which is welcome. I would like to pay tribute to all the public services, not just in my constituency but throughout the country, that have done so much to keep us in a reasonably good place as a country, and also to the volunteers who have ensured that people who were shielding and isolating had the food and support that they needed. I pay tribute to Basingstoke Voluntary Action and all the emergency hubs in my constituency, which were funded by our local authority. We are very grateful to them.

The House has not lost a single day of sitting, and although I do not like the fact that our proceedings are curtailed at the moment or that we do not have Westminster Hall debates, the staff here have ensured that we can continue to exercise some sort of parliamentary scrutiny. As I am sure colleagues will agree, our constituency offices have also played a blinder in supporting our constituents with the information that they need. What our constituents want now, however, is that we not only suppress the virus but enable them to have confidence that their families will have a financially safeguarded future. That is the challenge that the Government face, and that is why I am heartened that the Secretary of State for Health and Social Care is often at the Dispatch Box outlining the work that he is doing and the relentless work that his team is doing. The idea that this is being done behind closed doors does not bear much scrutiny, because so many statements are being made here. I also want to mention the work of the Chancellor in putting in place some groundbreaking schemes right from the beginning, including the furloughing and the kickstart scheme to try to get people back into employment.

When measures were put in place in March, we were dealing with the unknown, and with a virulent killer virus, but now we are dealing with things that we perhaps understand a bit more about. I would like to suggest to the Minister on the Front Bench that we look not only at how we geographically target the work that the Government are doing, but at targeting specific groups, some of which have been touched on today. Before I get on to that, I will say to the Minister that we have all turned into virology experts now. We used to be international trade experts, and now we are virology experts, but I have to say that I would really rather like the Minister to continue to deal with the highly complex issues that the Government are dealing with now, rather than having them debated in front of the House. A level of scrutiny is needed, but let us be real here. These are complicated issues and Government Ministers have the details of the arguments to hand to ensure that they make the right decisions on our behalf. They can then come before us at the Dispatch Box to justify them.

There are two issues that I would like the Minister to take away from the debate today. First, there is the issue facing disabled people. We know for a fact that there has been a 134% increase in deaths among people with learning disabilities, and I pay tribute to my right hon. Friend the Member for South West Surrey (Jeremy Hunt), the Chair of the Health and Social Care Committee, who is doing an excellent piece of work in that area. Can the Minister please confirm that he will work better, and with better transparency, on looking at the recommendations of the Committee, particularly on local authority use of easements in the Care Act 2014?

Secondly, we need more targeted support for women. Across the globe, women have been more adversely impacted than men by the coronavirus. We have record numbers of women in work in this country now, but we face critical problems with women, particularly pregnant women and new mums, being made redundant and not being able to get back into work because they are disproportionately represented in those sectors that have been hardest hit. Please will the Minister look carefully at the 10-minute rule Bill that I have introduced, working on measures that are already in place in Germany, to better protect this group of women? Otherwise, the Government will not realise their ambition of eliminating the gender pay gap in a generation.

Covid-19 Update

Maria Miller Excerpts

Tuesday 8th September 2020 Commons Chamber

[Matt Hancock]

I am very happy to look at this point. Of course, we do have to verify the identity of people who are asking for home testing kits, and there have to be protections against fraud, and we take advice from the National Cyber Security Centre on that, but I will look at the point the hon. Member raises.

[Mrs Maria Miller (Basingstoke) (Con)]

May I commend my right hon. Friend on the swift action that he takes, and the way in which he comes before this House on a regular basis to update us? I think that is important, as are the lessons that are being learned from other countries. In his statement, he actually announced something as well as the lockdown in Bolton, which is that his current guidance regarding people in high incidence areas socialising only with those in their own households will be turned into law. That is presumably to strengthen enforcement. Could he take a moment to explain what that will mean in practice and whether there be an impact on venues that may be required to be part of that enforcement process, and when does he intend to bring that before the House for discussion?

[Matt Hancock]

That measure is specifically in Bolton, which has brought into place at a council level the guidance that people should not socialise outside their households. We will be turning that into law in Bolton. Of course, we keep all those sorts of things under review nationally, but to be absolutely clear, the measure that I announced today was specifically with respect to Bolton. I also thank my right hon. Friend for her kind words—I do my best.

Covid-19: BAME Communities

Maria Miller Excerpts

Thursday 18th June 2020 Commons Chamber

[Mrs Maria Miller (Basingstoke) (Con)]

I pay tribute to the hon. Member for Brent Central (Dawn Butler) for calling for this debate, and to the Backbench Business Committee for granting it. It is a great pleasure to follow my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes), who is now the Chair of the Women and Equalities Committee; I commend her for all the work that she is doing.

I also pay tribute to all the NHS workers in Basingstoke, in Hampshire and throughout the country who, despite all the headlines and despite the fear, kept going. I think particularly of those from different black and ethnic minority groups, who face particular fear and challenges. We should pay tribute to them in this debate.

My right hon. Friend the Member for Romsey and Southampton North talked about the fact that when we discuss issues affecting BME communities, we often talk about employment and education. In this pandemic, it has been the differential impact on health that has shocked us all to our core. She is right that we need to give people a voice to speak out on that.

It was particularly concerning for me when I was approached by individuals in my constituency from different sectors of my thriving and vibrant BAME community about their fears and about what this meant to them. It struck me that the information available was so vague and general that it was difficult for me to respond to their questions. One particular individual from my Indian community asked, “Does this mean I’m more at risk?” I could not answer that, so I looked carefully at the research from Public Health England when it came out. I will come on to that in a moment.

We have to be careful when we look at this issue. I know that the hon. Member for Brent Central will agree that we have to take great care not to simply treat BAME communities as one homogeneous group. We run the great risk of coming to the wrong conclusions if we speak as though they all have the same challenges—indeed, if any of us have all the same challenges. We know as Members of Parliament that our opportunities in life are too often determined far too much by our socioeconomic backgrounds, by the occupation of our parents or by the healthcare that we receive throughout our childhoods. It is the same for every group in our society. The way that we can address this is by understanding each group individually, and having accurate data is important in trying to disentangle and understand this particular issue, which the hon. Lady so eloquently outlined in her opening speech.

It was with some bemusement that I read the Public Health England analysis, because it was, frankly, incomplete. It did not include a breakdown of individual occupations, it did not look at comorbidities, and it treated people from the BAME community as if they were one homogeneous group, which I think we have just agreed does not exist. This was incredibly concerning, and I hope that the Under-Secretary of State for Health and Social Care, my hon. Friend the Member for Bury St Edmunds (Jo Churchill), will be able to address this directly when she speaks at the conclusion of the debate.

I took some time, after reading that Public Health England report, to go back through one of the reports done by the Women and Equalities Committee in September 2018, on the race disparity audit. It was a good report that was well received by the Government, and it called for distinct changes in the way in which Government organisations collected data, precisely so that we did not end up with a homogeneous approach to these issues. In particular, I would be grateful if the Minister could update the House on the work that has been done around the conclusions of that Women and Equalities Committee report, because it is unacceptable in 2020 Britain that Public Health England would not include an analysis of those particular factors in its analysis of this health pandemic.

I know that PHE is reliant on the Office for National Statistics and other organisations for the data that it is given, but that is exactly the issue that we focused on in the Women and Equalities Committee report. We identified the need for the standardisation of data and the need to ensure that we did not have a homogeneous approach, particularly when we talked about the analysis of data relating to different ethnic minority groups. Perhaps my hon. Friend the Minister could also update the House on the quality improvement plan that was going to be put in place, where the race disparity audit was going to work with the ONS centre for expertise on inequality. A key recommendation was that the Government should have an action plan to improve data collection to ensure that disaggregation was far easier and that more data was collected. The Select Committee also called for the inter-ministerial group on race disparity to work more closely with the ONS on these issues, and perhaps the Minister could update the House on the work of that particular sub-Committee.

It is a tragedy that we are having this debate today, but it is an important debate not just for covid-19 but for the way in which we understand these problems more generally.

Covid-19 Update

Maria Miller Excerpts

Tuesday 5th May 2020 Commons Chamber

[Matt Hancock]

This is an incredibly important question. My hon. Friend the Under-Secretary of State for Health and Social Care, the hon. Member for Bury St Edmunds (Jo Churchill), who is responsible for dentistry, is working very hard with the British Dental Association and others to make sure that dentists get the support that they need.

[Mrs Maria Miller (Basingstoke) (Con) [V]]

Further to that question on dentistry, I have spoken to local dentists in my area and a number feel that they have the correct PPE and working conditions to be able to provide the sort of emergency dental care that many of their patients need. Can my right hon. Friend outline how we can move forward with dental practices in the same way as he has worked so hard in moving forward with the work that hospitals are able to do now, for which I would like to reiterate my thanks?

[Matt Hancock]

This is a really important point. I will write to my right hon. Friend with the proposed plans for reopening dentistry. Obviously, that has to be done in a safe way, and PPE is one important consideration. Dentistry by its nature requires close contact, and it can be an aerosol-generating procedure in certain circumstances, which makes it a higher risk to the dental practitioner—the dentist or nurse—and, in turn, to future patients, so we have to get this right. Emergency dentistry is available in dentistry hubs, which have been set up during the crisis. It is important to get this right, but it is also important to get dentistry back on its feet.