Thursday 12 November 2020
[Esther McVey in the Chair]
Breast Cancer Diagnosis and Services: Covid-19
I remind hon. Members that there have been some changes to normal practice in order to support the new call list system and ensure that social distancing can be respected. Members should sanitise their microphones using the cleaning materials provided before they use them and then dispose of those materials and respect the one-way system around the room.
Members should only speak from the horseshoe and Members can only speak if they are on the call lists. That applies even if debates are undersubscribed. Members cannot join the debate if they are not on the call list. Members are not expected to remain for wind-ups. I remind hon. Members that there is less of an expectation that Members stay for the next two speeches once they have spoken. This is to help manage attendance in the room. Members may wish to stay beyond their speech, but they should be aware that doing so may prevent Members in the seats in the Public Gallery from moving forward to the seats on the horseshoe.
I beg to move,
That this House has considered the effect of the covid-19 outbreak on breast cancer diagnosis and the future of breast cancer services.
It is a pleasure to serve under your chairmanship, Ms McVey. As co-chair of the all-party parliamentary group on breast cancer, I am delighted to raise these hugely important issues. It is great to see the Minister in her place; she brings great expertise and knowledge to this topic. This has all the hallmarks of an excellent debate.
To set the scene, as hon. Members will know, the pandemic has had a major impact on breast cancer services, with Breast Cancer Now estimating that almost 1 million women in the UK missed out on their screening appointment as a result of a pause in the programme. There was a worrying drop at the peak of the pandemic in referrals of suspected breast cancer and breast-related symptoms.
We also know that some breast cancer patients had their treatments changed or temporarily paused to protect their immune system, or had their surgery delayed. That caused, understandably, huge anxiety, particularly for patients with incurable cancers, such as secondary breast cancer, and that was passed on to their families. Recruitment to many clinical trials was paused. The sustained pressure on staff as a result of dealing with the covid-19 pandemic alongside the existing challenges for the breast cancer workforce, has the potential to overwhelm the system for the foreseeable future.
There is some good news. Despite a dip in August, referrals have been steadily recovering. Although there is some way to go before they reach pre-pandemic levels, breast screenings are restarting and the number of people beginning treatment is rising. I am sure hon. Members across the House will join me in thanking the NHS for its effort in treating people and finding ways to deal with cancer patients during the pandemic. I would particularly like to thank my local hospital, the George Eliot Hospital, and Kristy and her team in palliative care. They do such amazing work, in difficult circumstances.
The recovery plan set out how we will restore breast cancer services to pre-pandemic levels, but we also need to look to the future, to ensure that the progress we made in treating cancer is not allowed to stall or be forgotten. As I mentioned, the pandemic has raised several urgent issues in relation to cancer. It is fair to say that many of those needed tackling prior to the pandemic, and they still need addressing.
In 2018, a report by the APPG on breast cancer showed that while breast cancer outcomes were good and outperforming those of other cancers, inequalities in diagnosis, treatment and care across the country were being masked, impacting the experience and outcomes of patients. Our inquiry also found significant variations across England in the support that women with secondary breast cancer received, particularly in access to a clinical nurse specialist, patchy provision of information, psychosocial needs not being met, and a lack of prompt and timely access to specialist palliative care services.
I know that hon. Members will all have their own angles that they want to address in today’s debate, and I take the opportunity to thank the many organisations that have been in touch with their views on what we could discuss. However, I want to focus my remaining remarks on secondary breast cancer, which is an issue that the APPG has had a particular focus on. For hon. Members who are not aware, secondary breast cancer occurs when breast cancer has spread to other parts of the body. Critically, it cannot be cured, but it can still be treated. To put that in context, about 1,000 women still die every month from breast cancer in this country, and pretty much all those deaths are from secondary breast cancer, so it is a considerable issue that we need to address.
Five years ago, in October 2015, I hosted my first ever Westminster Hall debate, which was on the subject of secondary breast cancer. I spoke about the inequalities in the system, and the fact that secondary breast cancer patients were often overlooked. It was in that debate that the present Minister, my hon. Friend the Member for Bury St Edmunds (Jo Churchill)—then a Back Bencher—spoke so powerfully about her experiences and battles with cancer. I know this is an issue that she is really passionate about getting right, but sadly, for various different reasons, since my 2015 speech nothing much has changed. I know that that frustrates the Minister as much as it does me.
The research continues to show that although many secondary breast cancer patients receive inadequate care, it is all too often even worse than that which they received when they had their primary diagnosis. That cannot be right in this day and age. The 2015 debate noted how much of the current discussion and debate on cancer focuses on promoting early diagnosis of primary breast cancer and improving survival outcomes, which is absolutely right; we should be dealing with that, but a crucial part of any strategy has to be that we do not forget about people who are living with incurable cancers. They should be given parity of care in our system.
There are many things that we could do, including focusing on earlier diagnosis of secondary breast cancer and increasing knowledge and understanding of the signs and symptoms of it. However, I want to focus on two areas; if we addressed them, it would make such a difference to patients who have secondary breast cancer. The first is around data, which is one of the key issues. One of our problems that is that we have a real lack of understanding of the data on secondary breast cancer. At the moment, we do not know how many people are diagnosed with it each year, how long they are living for, how the disease spreads or what kind of treatment and support they are receiving.
Where data on secondary breast cancer is collected, there is variation in what is recorded and how that is done. That is despite its being mandatory since 2013 for hospitals to collect data on their new diagnoses of metastatic cancer. Research by Breast Cancer Now in 2016, repeated in 2018, showed that that is still routinely not happening. In the 2018 study, a staggering 40% of hospital trusts and health boards across the UK were still unable to tell Breast Cancer Now how many secondary breast cancer patients were under their care.
I brought up that issue in the 2015 debate on secondary breast cancer. I highlighted some of the practical barriers to data collection, which often include IT constraints, constraints of time within hospitals, their structures, a lack of awareness about what data is required, and confusion in the trusts and hospitals about who was responsible for inputting the various data items.
The hon. Gentleman is making an important and powerful point, and I hope the Minister is taking note. As he rightly says, many older people—particularly older women—with breast cancer were not prioritised to receive breast radiotherapy over the past six months. Data is available in the radiotherapy datasets that are held by Public Health England, but they have not been published so far. Does he agree that the Minister should seek to persuade NHS England to publish that data?
The hon. Gentleman raises an interesting point, which I am sure the Minister will address. It makes perfect sense that we are seeing the lack of cohesion in data. We know that data is power in everything—without the data, how can we plan a strategy? Wherever we get it from, it should be imported into the system. In the 2015 debate, I asked the Minister to lead the way on ensuring that the data was collected uniformly in every hospital, and not just collected, but collected in a format that enables us to interpret it. We need that now more than ever.
I felt that we were making some headway at the start of the year. I had a productive meeting with my right hon. Friend the Secretary of State for Health and Social Care, where we brought in some secondary breast cancer patients and had a really good discussion on a number of topics. Data was one of the key things that we addressed. The Secretary of State made very positive noises about the potential for a national secondary breast cancer audit. Unfortunately, shortly after that, we ended up in the grip of the pandemic and I appreciate that the Department’s focus has been pulled into different areas.
To return to the point that I have made, without accurate figures for the number of people living with secondary breast cancer, it is nigh-on impossible for the NHS to plan and commission services effectively to meet patients’ needs. Equally, without understanding the level of service and care that patients were accessing before the pandemic, it will be challenging to know how to improve outcomes when we get back to pre-pandemic levels. How can we hope to do that without knowing where we started?
Inadequate collection and sharing of data acts as a barrier to service improvement. We are missing out on an incredibly powerful tool that we should be using to spot variation and hold services to account, and to better understand the secondary breast cancer population and the service it requires. At a time when long-term local and national plans are being drawn up, we want to ensure that the NHS can fully deliver on its commitments, and that we have a clear understanding of the experiences of people with secondary breast cancer.
I ask the Minister to follow up on the delivery of a national secondary breast cancer audit, which would cover things such as diagnosis, treatment and access to support. That could transform our insight into this key area and provide the missing information that is desperately needed to ensure that the NHS can meet the needs of those living with secondary breast cancer.
The second point that I will touch on is the importance of increasing access to clinical nurse specialists. In the 2015 debate, I said that the cancer patient experience survey showed that when a clinical nurse specialist contributes to a patient’s care, it is the biggest driver in improving their experience. That measure could save money in the long term, by keeping patients out of hospital and highlighting problems before they become crises in A&E. That is particularly true for secondary breast cancer patients, because they are on a lifelong treatment pathway and often have complex emotional and supportive care needs. A recent survey found that less than a third of secondary breast cancer patients had seen a CNS regularly. With the number of men and women developing breast cancer increasing, and people with secondary breast cancer living longer with the disease, there was already a high demand for CNSs. With covid-19 resulting in changes to people’s treatment and care, however, while also having an impact on their emotional wellbeing, access to CNSs for secondary breast cancer patients has never been more urgent.
Yet Breast Cancer Now’s most recent report said that 41% of breast cancer patients felt they had had less contact with their CNS during the lockdown period. That was partly down to the fact that, in common with other parts of the workforce, many CNSs were moved elsewhere in the NHS during the peak of the pandemic. As an example, 400 Macmillan NHS professionals, including Macmillan-funded CNSs, were among those redeployed.
I am sure all hon. Members agree that it is encouraging that the NHS long-term plan commits that everyone, including those with secondary cancers, should have access to a CNS. There was also an additional commitment in the recent people plan 2020-21 to offer grants for 250 nurses to become cancer nurse specialists. That is another step in the right direction, which we really applaud, but the commitments made by the Government require investment in training and expanding of the CNS workforce to meet both the current and future challenges. I am sure we all want that to be addressed when the full NHS people plan is published, and I am sure we all want it to be matched in its intent by receiving the necessary funding in the upcoming spending review.
I realise many people want to speak. There is much more that I could talk about, but I will conclude and recap the asks, which are pretty straightforward. We need a secondary breast cancer audit and a fully funded long-term workforce plan to ensure that the Department of Health has the appropriate tools and structures to honour its commitments to deliver the best possible outcomes for all cancer patients, and to build back breast cancer services better following the pandemic.
It might be helpful for colleagues to know that I intend to get to the Front-Bench speakers no later than 2.30 pm, so, to enable everybody to get in and speak, speeches will be limited to four minutes. Also, will the Front-Bench speakers be mindful of the time, because we want to hear Craig Tracey again?
It is a pleasure to serve under your chairmanship, Ms McVey. I pay tribute to the hon. Member for North Warwickshire (Craig Tracey) for securing this important debate. He has spoken incredibly passionately and covered a wide range of issues relating to breast cancer. I want to focus my remarks on two issues. First, I want to speak about the need for a cancer recovery plan to deal with the backlog in breast cancer screening tests and get cancer treatments up and running again. Secondly, I want to speak about the need for urgent action to prevent the widening health inequality gap in this country.
Over the past few months, we have seen spiralling wait lists, the longest since records began. That has had a direct and devastating impact on people’s health. I have heard stories of frontline workers who have had their cancer screen test delayed, only to find out months later that their cancer has spread. It is a simple fact that the sooner someone has a cancer diagnosis, the more likely they are to survive. In March, breast cancer screening programmes were put on hold. One week into the second national lockdown, people are worried that that might happen again, and they fear for loved ones who might not get the care that they need.
In response to a parliamentary question that I asked, the Government revealed that nearly 10,000 women are waiting for a breast cancer screening in Barnsley alone, and more than 30,000 women in South Yorkshire. We have a postcode lottery in this country when it comes to breast cancer screening and mortality rates. Depending on where someone lives, they can be up to a third less likely to have attended a breast cancer screening in the last three years. Staffing pressures have directly impacted the capacity of the NHS to screen patients for suspected cancer, affecting the speed at which patients are diagnosed.
A Public Health England report found that the number of empty consultant breast radiologist posts in the country doubled between 2010 and 2016. The same report revealed that all breast radiologists in Yorkshire and the Humber are due to retire by 2025. Has the Minister’s Department assessed the impact of the pandemic on recruitment, and will she outline the Department’s plans to deal with the staffing crisis?
Health inequality in this country is not new. Life expectancy in Barnsley is five years lower than in Kensington and Chelsea. The pandemic threatens to widen existing health inequalities as areas such as mine face the double impact of more covid-19 cases and severe financial hardship because of the restrictions. As has already been mentioned in the debate, we need comprehensive, accurate data on patients and populations to map health inequalities across the country. This includes improving the cancer outcomes and services dataset so that patients and local providers can quickly and easily compare information on all cancers, including breast cancer. More needs to be done to support local providers to ensure they submit information to the dataset. It is the first step towards recognising the scale of health inequalities faced by this country and taking action to increase service improvement.
Covid-19 has not been a great leveller. Inequalities in care, treatment and diagnosis have come to light during the pandemic. At the same time, it is now widely recognised that societal inequalities have increased certain populations’ likelihood of suffering complications from the virus. It is clear that unless the Government act now to reduce the unequal impact of covid-19, those inequalities will become further entrenched, directly impacting the health and wellbeing of people across the UK.
It is a pleasure to serve under your chairmanship, Ms McVey. I add to the tributes to my hon. Friend the Member for North Warwickshire (Craig Tracey) for calling this important debate and speaking so powerfully at the outset about this issue.
This subject is especially pertinent because cancer, sadly, will touch each of our lives in some form. If we are not personally diagnosed, we will know someone close to us who is. It is one of the biggest long-term health challenges we face as a country, notwithstanding the current pandemic. Coronavirus has impacted on breast cancer services, as it has impacted on every part of our lives. Breast Cancer Now has described coronavirus as “the biggest crisis” that breast cancer has faced in decades.
As the hon. Member for Barnsley East (Stephanie Peacock) outlined, the earlier breast cancer is diagnosed, the more likely treatment is to be successful. Earlier this year, the screening programme was officially paused in Scotland, Wales and Northern Ireland, and it was effectively paused in England from March. Screening has now restarted, but it is patchy across the country, with some having quicker access than others. With each month that passes, more women with breast cancer could be missing the chance of an early diagnosis, which is key to preventing deaths from the disease.
As my hon. Friend the Member for North Warwickshire pointed out, Breast Cancer Now estimates that nearly a million women who require screening are currently waiting across the United Kingdom, and around 8,600 of them could be living with undetected breast cancer. This has been exemplified in my Carshalton and Wallington constituency. As part of the London borough of Sutton, we are lucky to be home to the world-leading Royal Marsden Hospital. I want to put on record my thanks to Dame Cally Palmer and the amazing staff at the Royal Marsden whom I had the pleasure of visiting recently.
Sutton is also home to the Institute of Cancer Research, which is expanding in conjunction with the Royal Marsden to become the first cancer hub in London and, indeed, the UK—right on our doorstep. That will provide thousands of highly skilled jobs for the area, and it is massively exciting for the future of cancer research. Sutton could well be the site of a major breakthrough in cancer research. The ICR and the Royal Marsden do a fantastic job. The latter stepped up and played its role in tackling the pandemic, adapting to deal with coronavirus patients, but that meant, sadly, that cancer patients had their diagnosis delayed, as did so many others.
In the second national lockdown, it is most important to ensure that those services are not paused again. I am pleased that that has not happened in my part of London, but we must have a plan to deal with the backlog as soon as possible. The NHS long-term plan is ambitious when it comes to cancer. I worked on that when I was in the national health service. However, there were challenges in dealing with the cancer strategy even before covid-19.
We have already heard about the existing problems in the workforce, and we need a plan for the implementation of Professor Sir Mike Richards’s review of the adult screening programme. I can see the Minister is nodding, so I hope she will add a few words on that. I hope she will tell us how we intend to deal with that backlog and return to the implementation of the ambitions in the long-term plan.
Thank you for calling me in this important debate, Ms McVey. I thank the hon. Member for North Warwickshire (Craig Tracey) for securing it. We are from the same part of the country, but from different tribes; I am red and white.
This is an important subject, and it is important that we address it. We are living through an unprecedented pandemic. I was saddened and alarmed to read yesterday that the UK had become one of only five countries to exceed 50,000 deaths from covid-19. In the fullness of time, no doubt, we will have a public inquiry into covid-19 that will examine the flaws in the Government’s covid-19 response. I certainly believe that the Government will acknowledge that they were not properly prepared for a pandemic and did not have a proper and effective plan to manage infectious disease and routine day-to-day healthcare.
The impact on breast and other cancers has already cost lives and will continue to do so, but I want to focus on the cancer recovery plan. The Government can take steps to avoid unnecessary cancer deaths arising from the backlog of delayed diagnosis and treatment. I have met the Minister on several occasions in my capacity as vice-chair of the all-party group for radiotherapy and the all-party group on cancer, and we have had constructive dialogue, so I am afraid she will not be able to argue that solutions were not put forward to address this issue and mitigate potential deaths arising from delayed treatment.
The Catch Up With Cancer campaign, which Radiotherapy4Life is supporting, has identified that the cancer backlog stands at more than 100,000 patients. I recently had a meeting via Zoom with Macmillan cancer support—I am one for badges; I am wearing Radiotherapy4Life’s and Macmillan’s—to discuss what needs to be done to address the cancer backlog. It estimates that there are 50,000 missing diagnoses for cancer across the UK—it calls them the forgotten C. An estimated 100 fewer women started treatment for breast cancer each working day in May and June, compared with last year. Breast cancer two-week wait referrals are down 25% in March to August this year, compared with 2019.
I was joined on the call by a representative from Macmillan’s Joining the Dots campaign—a lady called Chloe Shaw, who is doing excellent work. That brilliant local service, which may be available in other parts of the country, offers practical help and support to people affected by cancer—in my case, those living in County Durham and my constituency of Easington. Joining the Dots has supported people in my constituency living with cancer throughout the pandemic. At the moment, it is having to work primarily through telephone and video calls.
Macmillan estimates that there are currently almost 18,000 people in County Durham living with and beyond cancer—people who have already been diagnosed may be fearful that there will be a recurrence. It is estimated that that figure could rise to almost 29,000 by 2030.
As vice-chair of the all-party parliamentary group on radiotherapy, I am particularly interested in this issue. In the Chamber today we have a number of former Ministers who have been banging this drum for some time. The issue now is the impact of the pandemic on the availability of radiotherapy treatment. We really must do something for the many older women with breast cancer who have not been prioritised to receive radiotherapy over the past six months. The data is available and should be acted upon. Will the Minister publish those datasets? We certainly need smart solutions and investment, but they must be reflected in a comprehensive spending review, so I hope the Minister will make the necessary representations to the Treasury.
It is a pleasure to serve under your chairmanship, Ms McVey. I congratulate my hon. Friend the Member for North Warwickshire (Craig Tracey) on securing this timely and important debate. I pay tribute to the work that he and the all-party parliamentary group have done on this issue over a number of years. It has been really important.
We have come a long way in this country on breast cancer survival rates over the past few years, but about 11,500 women still die every year from the disease. We know that early diagnosis is absolutely vital when it comes to survival rates, so I am very concerned about the impact that the pandemic has had and continues to have.
In my constituency in the High Peak, a commissioning decision was recently taken by NHS Midlands to withdraw the breast cancer mobile screening units from three towns—Buxton, Chapel-en-le-Frith and New Mills—and to move that service outside the High Peak to Bakewell. This is no slight at all on Newholme Hospital in Bakewell and the fantastic staff there—I pay tribute to them and to all the NHS staff working in breast cancer screening services—but there is a question of accessibility. The Peak district does not have the best roads; we are heading into winter, when those roads become even more inaccessible. Public transport is patchy at best, and I am incredibly concerned about how many women will feel unable to make appointments if they have to go all the way to Bakewell. I am alarmed about this decision, and it is one that I disagree with. I really hope that we can reinstate the mobile screening units in the High Peak as soon as possible. My message to the Minister is clear: we desperately need to get those units reinstated, and I hope that I can meet her to talk about this in the near future.
It is a pleasure to serve under your chairship, Ms McVey. I, too, congratulate the hon. Member for North Warwickshire (Craig Tracey) on securing this important debate.
This year has been incredibly difficult and challenging for everyone working in our national health service, for the patients they serve and for the staff and volunteers at the many charities and community organisations that help to support patients and carry out critical research, including Breast Cancer Now, Breast Cancer UK, Macmillan Cancer Support and Cancer Research UK. I pay tribute to them, and to every one of the staff who work in King’s College Hospital in my constituency for their incredibly hard work since the start of the coronavirus pandemic. Our nurses, doctors, care assistants, allied health professionals, porters, cleaners and admin staff have all worked with extraordinary commitment in exceptionally challenging times.
Breast cancer is a devastating condition, and every year across the UK more than 50,000 women, as well as approximately 400 men, receive their first diagnosis of it. I pay tribute to the hon. Member for Chatham and Aylesford (Tracey Crouch) and to my friend Paula Sherriff, the former Member for Dewsbury, for speaking publicly about their recent experience of diagnosis and treatment during coronavirus—an experience that is made all the more difficult by the restrictions on contact with friends and family, who are often so vital in providing comfort during a difficult time.
Although our NHS staff have worked so incredibly hard this year, as always, the coronavirus pandemic has exposed the impact of 10 years of austerity on our healthcare system. In many parts of the country, including my constituency, our NHS was not able simultaneously to care for patients impacted by coronavirus and to maintain the array of other critical services, including cancer screening. Our local hospital worked extraordinarily hard to maintain cancer treatment, but across the NHS the need to cope with the huge influx of coronavirus patients and prevent further infection spread, particularly among clinically vulnerable people, caused significant disruption to surgery pathways.
Many people also became concerned that GP surgeries and accident and emergency departments were not safe environments, and therefore they put off reporting concerning symptoms that might have been the first sign of cancer, including breast cancer. The breast screening programme was officially paused in Scotland, Wales and Northern Ireland, and effectively paused in England, in March. At the peak of the pandemic, there was a drop of approximately 70% in the number of cases of cancer being reported across the UK, with Breast Cancer Now estimating a drop of more than 100,000 referrals for breast cancer.
As we know, early diagnosis is key to obtaining the best possible outcomes for patients who are eventually diagnosed with cancer. As MPs, unfortunately I am sure that we are all aware of constituents whose diagnosis came much later than it should have done, because the impact of the coronavirus pandemic. However, even for those constituents who managed to receive a diagnosis, there have often been unacceptable waiting times for treatment that was urgently needed. The stress of knowing that urgent surgery is needed to remove breast cancer, but not having a firm appointment or timescale for such surgery, has been unbearable for a number of my constituents.
Exercise Cygnus clearly showed that the UK was hugely underprepared for a pandemic such as covid-19, but instead of learning the lessons from 2016, this Government buried them. That has resulted in unbearable strain on many parts of our NHS. Just a few days before the second national lockdown, I visited King’s College Hospital to thank the staff for their tremendous hard work and to discuss the preparations for the second wave of coronavirus. It was reassuring to hear about the detailed planning that has been carried out for the second wave, and about the focus on keeping non-coronavirus treatments and care going at this time, but we know that there is a backlog.
I want to end by highlighting the inequalities that already exist in gaining access to breast cancer treatment and screening, with black, Asian and minority ethnic residents far less likely to access screening and far more likely to end up with a late diagnosis. We urgently need a proactive programme to ensure that there is equal access to screening services, that this pandemic does not result in a further deepening of unequal access and that all breast cancer patients get access as soon as possible to the treatment and care they need.
Another debate about breast cancer. There have been many—too many. For my first five years in this place, I was proud to lead the all-party parliamentary group on breast cancer, and it is in good hands now with my hon. Friend the Member for North Warwickshire (Craig Tracey). For more than two years, it was the privilege of my life to serve as the cancer Minister and to be part of what I call team cancer. Heaven knows, I spent my fair share of time sitting in the Minister’s seat in Westminster Hall, as she—the current Public Health Minister—now knows.
For each of the 10 years that I have been an MP, we have lost around 11,500 women a year in the UK to this menace, as has been said. That number has come down thanks to advances that we have made and investments that all Governments have put in, but we have to do so much better. That is 115,000 mums, sisters, grans, aunties and friends over the decade that I have served in this place. I have never spoken before about which one of them it was for me, and I do not think I will go there today, but I will say this: I have fought and lost to breast cancer more than I have won.
And let us not forget the guys. I was glad that the previous speaker, the hon. Member for Dulwich and West Norwood (Helen Hayes), mentioned them. Yes, breast cancer is rare in men, but around 370 men a year are diagnosed in the UK. It still kills, so I welcome the Male Breast Cancer Study that was established to pinpoint some genetic and environmental lifetime causes in men.
Going back to the title of today’s debate, it is true that covid has not helped, but the breast cancer toll goes on regardless. That is as true today as it was pre-pandemic. Breast cancer remains a largely beatable and treatable cancer if it is detected early. Primary breast cancer can be fatal, but we know that almost all deaths are attributable to the development of metastatic, or secondary, breast cancer. As Breast Cancer Now puts it so well—this has been quoted before, but it is worth saying it again—coronavirus is the biggest crisis secondary breast cancer has faced in decades.
We know that some patients with breast cancer had their treatments changed or paused to protect their immune systems. We wait with nothing but fear for the impact of those periods on keeping the disease stable. Let us stop for a moment to consider the reality of those pauses. There is that sinking feeling in a person’s stomach every morning when they wake up and remember that they have breast cancer but they cannot take any action to beat back the disease, because of the pandemic. When they are busy doing something else—maybe enjoying a child or a grandchild being super-cute—it rushes back in, like a punch to the stomach, and they realise they cannot take any action to beat the disease, because of the pandemic. For the children of breast cancer patients who call up on Zoom because they cannot meet, things look and sound the same, but mum cannot take any action to beat back the disease.
Many of these covid delays have had a negative impact on the emotional wellbeing of patients and their families. Never before has the clinical nurse specialist role been more important. We have heard from research undertaken by Breast Cancer Now, an excellent charity, that patients feel they have had less contact with their CNS during the pandemic. When the Minister sums up, could she update us on that? I know she will.
The flip side to that emotional support is the third sector. Many charities, including Wessex Cancer Trust and the Winchester and Eastleigh Cancer Support Group in my area, have switched from physical to virtual, and I thank them for their work. However, there are other charities that have had to pull back just when we need them most, including Breast Cancer Haven, Wessex, which opened only a few years ago, and Breast Cancer Haven, West Midlands, in Solihull. They have closed permanently, and the charity is now operating only online services out of its London base.
Breast cancer incidence in my area, Wessex, is significantly higher than the England average. The rate is 184 per 10,000, compared with 168 across the country. Our mortality rate is spot on the average, but that still has us losing 118 people every year, almost all from secondary cancer.
I was alarmed that my trust had to cease the local breast screening programme in March, because of “did not attends” and cancelled appointments in the first lockdown. Three weeks later, the trust got formal guidance, and the service was suspended for 17 weeks. I fear that this is going to be one of the terrible legacies of lockdown.
The good news is that the restoration of the screening service is well under way, and I thank the team at Hampshire Hospitals for that. The tragedy for us is that, pre-covid, Winchester had a very high uptake of screening in the local population. We have to get back to that.
We have a battle royal on our hands with breast cancer; that was the case before the pandemic, and it is after. When I sat in the Minister’s seat, many hated me describing cancer and breast cancer as a fight, but they are just that. They always were. We needed to up our game pre-covid, and we certainly need to up our game post-covid, if we are not to be here in another 10 years having exactly the same conversations.
I welcome you to your new role in Westminster Hall, Ms McVey. It is a pleasure to follow the hon. Member for Winchester (Steve Brine). He and I have sparred many times—never sparred; we have worked together, which is a better way of putting it—in many debates in Westminster Hall and the Chamber. I very much value those times, and I thank him. It is also nice to see the Minister and shadow Ministers in their places.
Every person in this place, including myself, is probably intimately acquainted with someone who has suffered from breast cancer. The statistics stick in your mind. I will focus on my own area; I know it is not the Minister’s responsibility, but I will give a few stats from Northern Ireland and my own constituency.
Some 129.4 people per 10,000 develop breast cancer in Strangford, compared with 165.2 right across Northern Ireland—a significantly better incidence rate in Strangford. But when we compare the stats with England, we are worse off. The incidence rates for Northern Ireland and Strangford are 62 per year, and 38 people per 10,000 die from breast cancer in Strangford, compared with a rate of 36.1 across England. We in Northern Ireland, and in my constituency in particular, have some rates that are very scary. People are also dying from secondary breast cancer. Northern Ireland has the highest mortality rate from breast cancer in the UK, compared with 33.97 in England, 34.2 in Scotland and 33.9 in Wales.
A freedom of information request by Breast Cancer Now found that 40% of hospital trusts and health boards across the UK were unable to tell how many secondary breast cancer patients were under their care, including my local South Eastern Health and Social Care Trust.
As the hon. Member for North Warwickshire (Craig Tracey) did, I want to focus on secondary breast cancer. I congratulate him on bringing the issue forward for debate. He set the scene well. Clinical trials provide a vital opportunity for patients to access potential new treatments at an early stage of their development. That is particularly important for women with secondary breast cancer, who often have limited treatment options available to them and for whom clinical trials provide precious hope to have more time with loved ones. Recruitment to the many clinical trials was paused during the pandemic. While there was relatively little disruption for breast cancer patients already on clinical trials, the pause in recruitment to many trials will have made it difficult for other patients to access them.
In March, the National Institute of Health Research suggested that many NIHR-funded or supported studies might have to be paused as healthcare professionals were asked to prioritise frontline care and make research facilities available if asked to do so by their employer. Of 92 breast cancer trials that the NIHR clinical research network was supporting in March 2020, 50% were paused for recruitment, 45% continue and 5% were closed.
Research clinical trials are so important. Of the 118 respondents to the Breast Cancer Now survey who were receiving or expecting to receive treatment as part of a clinical trial during this time, just under a quarter said they had experienced disruption. The pause in recruitment will have made it more difficult to access trials, and 59% of all respondents were concerned about it.
I know that the Minister always answers with knowledge and understanding. I ask her what lessons can be learned from the speed with which trials for coronavirus have been set up. How can we apply that to setting up clinical trials for other health conditions such as secondary breast cancer? Perhaps coronavirus gives us an opportunity to look at trials—breast cancer trials in particular—in a different way. What good can we take from all of this?
Members of the Association for Medical Research Charities account for 66% of research on cancer. Shop closures and the suspension of many fundraising activities because of covid-19 have had an immediate and severe effect on those charities’ incomes, and their investment in research will drop by £310 million. Breast Cancer Now will see a 34% drop in its income as a result of the pandemic. I support the AMRC’s call for a life sciences charity partnership fund to mitigate the impact of the pandemic and ensure the continuity of charity-funded research.
I welcome the Government’s commitment to the £750 million charity support package, but the medical research charities have not had any help. I thank the hon. Member for North Warwickshire for leading the debate and all those who contributed. I spoke at about 100 mph there.
It is not just a pleasure but a delight to serve under your chairmanship for the very first time, Ms McVey. I thank my hon. Friend the Member for North Warwickshire (Craig Tracey) for securing this important debate at a critical time. It is a great pleasure to follow my indefatigable friend, the hon. Member for Strangford (Jim Shannon)—I believe this is the first time, as he usually follows me.
The lockdown order and the ensuing restrictions that we presently endure have had a seismic impact on the services that the NHS can provide, including, crucially, cancer services. NHS figures show a 60% drop in urgent cancer referrals from the initial days of the March lockdown, compared with the same time last year.
Breast Cancer Now, which has been mentioned by a number of colleagues, has raised concerns that almost 1 million women in the UK have missed NHS breast cancer screenings as a direct consequence of the pandemic, because they were paused during the first lockdown before being gradually resumed. Mammograms have the potential to detect cancer in its early stages and, ultimately, to save lives.
Treatment for those with other cancers has been significantly disrupted. The national guidelines may well have stated that urgent and essential cancer treatment must continue, but that has not been the case in every hospital. Not everyone who has required urgent surgery has been able to access it, whether because of a lack of intensive care units or because it is too great a risk to patient or staff.
Similarly, those who have required major surgery have not always been fortunate enough to receive it. That, again, has been a consequence of a lack of recovery beds with ventilation or of there being no ICU beds, if the surgery encountered complications, or because the surgery was simply too risky. Aftercare—whether palliative care or chemotherapy—has also been disrupted by the lockdown.
The reality of those delays not only puts women under a great deal of stress and anxiety, but risks making the cancers diagnosed harder to treat if they are caught at later stages. I truly understand that pain: an inordinate number of my family members have suffered from cancer.
Those who suffer from breast cancer should not be collateral damage in the battle against covid. Worryingly, that has been the case for virtually all forms of cancer treatment. The Health Data Research hub for cancer has warned that, as a result of the pandemic, there could be an additional 18,000 deaths of people with cancer.
In Wakefield, the Mid Yorkshire Hospitals NHS Trust has been proactive in its attempts to ensure that cancer diagnoses occur and cancer patients are treated. Prior to the pandemic, cancer was sadly already the biggest single cause of early death in the district. Breast cancer was the second most prevalent form, with about 250 new cases diagnosed each year.
In May, Pontefract Hospital was temporarily developed into a dedicated cancer centre to care for the people of Wakefield and North Kirklees who need diagnosis for surgery and suspected cancer during the covid-19 outbreak. Here, I have similar concerns to my hon. Friend the Member for High Peak (Robert Largan), because the move from Pinderfields Hospital to neighbouring Pontefract was undertaken on the basis that exposure to covid-19 in Pontefract was significantly lower than in Pinderfields, which is the regional hub for covid-19 patients.
However, while I concur with the chief executive of the NHS trust, Martin Barkley, that we are
“fortunate that we have excellent modern facilities at Pontefract Hospital”,
which is relatively close to Wakefield, having to travel significantly further afield will likely be a behavioural impediment on attendance for constituents scheduled for diagnosis and treatment. That adds to the existing fear about patients entering hospitals, evidenced by Abdul Mustafa, GP lead for cancer care at NHS Wakefield CCG, who said:
“Clinicians working in cancer services know that patients are choosing not to have time-critical cancer treatment because of fear of exposure”.
In closing, I simply say that we must ensure that, however well meaning the policies, the antidote does not become worse than the disease we seek to cure.
It is a pleasure to serve under the chairmanship of a fellow Cheshire Member, Ms McVey. I congratulate my hon. Friend the Member for North Warwickshire (Craig Tracey) on securing the debate.
I think we all agree that the NHS is facing probably the most challenging period in its history. During the previous lockdown, the Government and the NHS leadership were dealing with enormous levels of uncertainty and, like all of us, had in their minds the images of what happened in Italy, with parts of its health service totally overwhelmed by covid cases. Enormous effort was put into preparing the NHS for that possibility: wards were reorganised, whole new systems for moving patients through hospitals were instigated and staff were redeployed. I pay tribute to the hard work, commitment and flexibility shown by so many NHS staff as part of all this. The changes made and the approach taken can only be described as a success, in terms of the NHS managing the wave of covid cases as it did. Our NHS was not overwhelmed, and no patient with covid who needed more intensive treatment was prevented from getting it.
However, we are here to talk about the wider picture of healthcare for our constituents during the pandemic. Colleagues of mine noticed almost immediately enormous drop-offs in patient attendance that simply could not be explained away by the lockdown. The first time I went to help in A&E, the department was quite simply the quietest I had ever seen it. It seems clear that there were people at home experiencing things such as heart attacks and strokes, which do not always present in a calamitous way that would cause one to definitely seek help.
[Steve McCabe in the Chair]
Of course, the debate is specifically on cancer diagnosis, and even in the best and most proactive health systems in the world, the journey often consists of experiencing a wide range of minor symptoms that only over time become apparent as something more serious. That is why it matters that, over the last few months, there has been an inevitable downturn in people seeing doctors and nurses, because people think they can put off seeing them about these symptoms.
In discussing breast cancer, we can at least take some comfort from our relative success in educating people about the symptoms to watch out for, which by comparison with other cancers are a little bit more specific. We have a proactive screening programme, because we know that we can spot cancers earlier and save more lives if people are screened, rather than waiting for symptoms. Most breast screening services were suspended due to the coronavirus, and Breast Cancer Now estimates that, while screening was paused, almost 1 million women missed out on their mammogram, and that around 8,600 women caught up in the screening appointment backlog could be living with undetected breast cancer. Thankfully, screening has now restarted across the UK, and I understand that more than 400,000 women were invited for breast cancer screening between June and August, with thousands more invitations being sent every month.
I will finish by focusing on two points. First, backlogs—I just described them for breast cancer; we have all described them today—affect a wide range of treatments. We must ensure that the NHS gets the additional resources that will be vital for it to catch up on the backlog of care and treatment built up during the lockdown, and which I am afraid is still building up in some areas. The record numbers of nurses and doctors now working for the NHS will be needed, and we will have to deliver on our manifesto commitments to keep building that workforce in primary and secondary care.
Secondly, we must make it clear to the public that the choice is not between tackling coronavirus or tackling the other healthcare needs of our constituents. Tackling coronavirus will allow us to carry on meeting the wider healthcare needs of our constituents. Any hospital faced with a choice between providing critical care for patients very sick with covid, who are at risk of dying there and then, and providing screening and non-urgent treatments will have to prioritise that immediate and critical healthcare need. That is why keeping the coronavirus suppressed is absolutely vital.
The NHS has moved on from where it was at the start of lockdown and every week is getting better and better at doing both things at the same time. We must all carry on giving it the room to manoeuvre that it needs to build on that further, enabling it to look after patients with and without covid, patients with urgent healthcare needs and planned healthcare needs, and patients requiring things such as screening.We will only stand a chance of being able to do that if we can continue to keep coronavirus suppressed, following the guidance that we have all been given—hands, face and space. Let us ensure that it is clear to constituents: this is not a choice between one or the other, but about supporting both groups of patients.
It is a great honour for me to make my maiden speech from the Opposition side of the Chamber, although it seems a little strange.
I congratulate my hon. Friend the Member for North Warwickshire (Craig Tracey) on securing the debate. I agreed with everything he said. Yes, I am reminded of my hon. Friends the Members for Norwich North (Chloe Smith) and for Chatham and Aylesford (Tracey Crouch), and of the redoubtable Paula Sherriff. We are all thinking of them at the moment, as they battle cancer. As far as my hon. Friend the Member for Winchester (Steve Brine) was concerned, I empathise with his remarks, because I was once on the Health Committee for 10 years. We had inquiries into many of the issues raised today.
Breast cancer is the most common cancer of all. At any time, about 600,000 people in the UK are living with or recovering from breast cancer. My wife had breast cancer. She was stage 2 and her treatment was absolutely wonderful. She, dare I say, got away with radiotherapy, but a number of her friends were stage 3 and had to have chemotherapy. Through early detection, however, more and more women are surviving as a result.
Perhaps my hon. Friend the Minister will write to me about this: Southend breast cancer service has been way up there at the top, but I was slightly concerned to be told that, in my constituency, 42 per 10,000, or 152 people, develop breast cancer every year; and I am really concerned that the uptake of breast cancer screening is below the national average, at only 65.3% of women invited to attend. Only 76.7% of women are diagnosed at stage 1 or 2, compared with nearly 80% across England. I am concerned by that, and I feel a responsibility as a local Member of Parliament to do something about the issue.
As we have heard from other colleagues, covid-19 has caused many regular services to be cancelled or delayed. In order to clear the backlog and ensure attendance at screening centres, women are sent—again, I say this to my hon. Friend the Minister—open invitations, rather than timed appointments. That may lead to fewer women making appointments and so reduce the uptake of breast screening, which has been happening consistently in recent years. If open invitations are issued, measures such as appointment reminders and letters from GPs must be put in place, urging women to attend.
Colleagues have mentioned Professor Michael Richards and his recommendations last autumn. The review found that screening capacity in the NHS needs urgent investment to increase the workforce and provide adequate equipment and facilities. Following the plan to extend the upper age for testing from 65 to 70, additional pressure was placed on existing staff, many of whom are near retirement age. About half of all mammographers are aged 50 and are likely to retire in the next 10 to 15 years.
I also hope that, now the Chancellor has discovered a money tree—which I am certainly going to get hold of—additional funding will be found for investment in clinical nurse specialists, to support those with incurable secondary breast cancer. Yes, the Macmillan nurses do an absolutely fantastic job—but more needs to be done.
In conclusion, the coronavirus pandemic has changed the way in which the NHS offers its services beyond recognition—we all salute that—with new technology, such as virtual appointments, being offered to patients. However, we must not lose sight of the importance of physical screening and consultations, in particular for breast cancer diagnosis. With the sobering statistic that one in seven women in the UK—my wife and three of our colleagues, whom we know about—will develop breast cancer at some point in their lives, it is more important than ever that this service is funded and resourced to allow the best chance of survival and recovery for those women.
I thank the hon. Member for North Warwickshire (Craig Tracey) for securing this very important debate, and I congratulate him on his compassion and lucidity in presenting his case. I start by paying tribute to all the NHS, research and charity staff who have been working on the frontline in their respective disciplines to ensure that we move through this challenging time and continue to meet the challenges of breast cancer.
Breast cancer is the most common cancer, with one in seven women affected, and the impact of covid-19 is most keenly felt by those women and has the greatest potential to affect the lives of so many because of its prevalence. Covid has had an impact on almost every aspect of our lives. We have heard that 1 million women have missed their breast cancer screenings, but the covid pandemic has affected all aspects of the cancer pathway, from screening and diagnosis to treatment and follow-up care.
The reasons are varied, and include concern and fear over attending, cancellations due to re-deployment and the impact on the wider NHS services, radiology, surgical, medical and clinical oncology. All of those aspects of the treatment pathway have felt the impact, including, as I mentioned earlier, the capacity for clinical trials and research. In that spirit, I led a cross-party letter to the Chancellor asking for the Government to consider the establishment of the life sciences charity partnership fund to support the charities that have been significantly affected by the covid pandemic.
The design and success of cancer treatment is absolutely reliant on early diagnosis, as it allows rapid progress to treatment, prompt surgical intervention in the case of breast cancer, and onward to radiotherapy or chemotherapy, or indeed both. As such, it maximises the efficacy of those interventions, whilst allowing tissue and immune systems to recover. However, there are challenges.
The Royal College of Radiologists has highlighted that there has been a reduction in referrals for symptomatic breast cancer within the two-week wait standard and a reduction of clinical capacity. There have been some innovative moves, where appropriate, for a hyperfractionation of radiotherapy treatment schedules. The royal college also noted that radiologists are having to deal with attendance anxiety. It has, however, also noted innovative changes to the configuration of services, which have enabled some of the softer aspects of cancer care to continue where possible.
The impact on the challenges that were already present prior to covid also needs to be considered. I remember—more years ago than I would like to mention—when I was involved in peer reviews with a London cancer network there was already a shortage of radiologists within the cancer pathway. That problem has, sadly, not gone away. It is not a problem unique to the English system at all. There is at least one consultant vacancy in clinical oncology. Another important issue to consider is that the attrition rate for consultant posts is greater than the ability to recruit. Thus, there is a pressing need to move these challenges forward.
The new ways of working—telemedicine, Hospital at Home, and other innovations—need investment. There is also a need to reassess the skill base of the workforce and acknowledge chronic excessive workload, which has been highlighted by The King’s Fund. According to Macmillan, there is a need more generally to recruit around 2,500 cancer nurses alone—of course, other disciplines, from GPs to radiographers, also need consideration for recruitment.
The post-covid recovery plan must include significant investment in diagnostics and treatment, radiology, recruitment and training in specialist allied disciplines. Effectively, the covid pandemic has landed a narrow aperture at the point of diagnosis for many cancers and, because of its prevalence, breast cancer is a significant cohort. To widen that aperture, there is a real and pressing need for funding to come forward in the comprehensive spending review; it must deliver an expansion of service to support innovation, fund the NHS plan and support social care.
It is important to acknowledge that staff in hospitals have been working incredibly hard throughout the pandemic, but there is only so much that we can squeeze out of them, and we cannot rely on a never-ending supply of goodwill and extraordinary resilience. My suggestion echoes a plea from my hon. Friend the Member for Central Ayrshire (Dr Whitford), who is a breast cancer specialist herself: clinical audit and quality improvement standards need to be at the heart of the drive forward. That work has been commended by the Nuffield Trust in its “Learning from Scotland’s NHS” paper.
We need to support getting it right first time, while making great strides to enable clinical outcome data to be captured and the impact to be fully understood. In short, substantial investment is no longer optional, and I hope that in the spending review the Government make the necessary investments, as called for by the hon. Member for North Warwickshire, to ensure that that is brought forward.
It is a pleasure to serve under your chairmanship, Mr McCabe. I start by thanking the hon. Member for North Warwickshire (Craig Tracey) for securing this important and timely debate and for his excellent introductory speech. He made a number of important points, some of which I hope to return to, and I hope he gets a positive response to his very helpful suggestion on the gathering of data. I also thank all the other hon. Members for their contributions today, and I will go through some of the highlights of those.
My hon. Friend the Member for Barnsley East (Stephanie Peacock) spoke about the need for a cancer recovery plan, which I think we all agree on, and addressed the important point about widening health inequalities and the startling differences in the availability of screening depending on where people live. I agree with her that improvements to the cancer outcomes datasets are an important part of beginning to understand how those disparities work out.
We heard from my hon. Friend the Member for Easington (Grahame Morris); I pay tribute to the work he does on the all-party parliamentary groups in this area. He mentioned the Catch Up With Cancer campaign and drew attention to the backlog, which, of course, many hon. Members have raised today. He also raised the availability of radiotherapy, which, in his own words, he bangs the drum on consistently in this place, and we pay tribute to his persistence.
The hon. Member for High Peak (Robert Largan) made an important point about the availability of mobile screening units and the hon. Member for Strangford (Jim Shannon) , who always speaks with such knowledge on this subject, made some important points about clinical trials and charities, which I hope to be able to return to if time allows.
It was a pleasure to see the hon. Member for Southend West (Sir David Amess) find his spiritual home at last; it is the equivalent of Gary Neville turning out to play for Liverpool, but he is welcome all the same. We have a vacancy in the shadow health team for a Parliamentary Private Secretary at the moment and, if he shows the promise that he demonstrated in his speech today, I think we may be able to find a role for him on this side of the House.
The hon. Gentleman made, as my hon. Friend the Member for Dulwich and West Norwood (Helen Hayes) did, an important point about some of the people who are not here today, including the hon. Member for Chatham and Aylesford (Tracey Crouch), who we heard this morning in business questions speaking about her frustration at not being able to participate in this debate. I am sure it would have been enhanced by her presence, given her current battle, alongside the former Member—still our friend—for Dewsbury, Paula Sherriff. I am sure the whole House sends both of them our very best wishes.
I want to speak about the impact the pandemic has had on the early diagnosis of cancer in general, as many Members have referred to already. We know how important early diagnosis is to improving chances of survival and in successful treatment. As we heard, Cancer Research UK estimates around 3 million people are waiting for breast, bowel or cervical screening, and there were over 1.2 million patients waiting for a key diagnostic test by the end of August this year. As my hon. Friend the Member for Easington mentioned, we know from Macmillan’s latest report that there are currently around 50,000 missing diagnoses; that compares to a similar timeframe for this time last year, and means 50,000 fewer people have potentially not been diagnosed with cancer.
We know significant amounts of capacity had to be created during this pandemic, and that meant the cancelling of planned operations, large numbers of patients being discharged back into the community, and staff and patients having to be protected from the transmission of covid-19. What those changes also meant is that, thankfully, intensive care did not have to be rationed so that only covid-19 patients were treated. However, it also caused the shutdown or reduction in many other non-covid services, which, combined with drastic changes in patient behaviour, has led to us facing this huge backlog today. We know that stricter infection control measures—which are absolutely necessary—mean that the backlog of care will probably take much longer to clear than we would like.
My hon. Friend the Member for Dulwich and West Norwood and other hon. Members referred to the Breast Cancer Now report, and how the number of people referred to see a specialist declined dramatically from April. There is an estimate that across the UK, there have been 107,000 fewer breast cancer referrals, and a backlog of almost 1 million women requiring screening has built up during this time. Some of those women may well have been living with undetected breast cancer, and some may still be. Every month that that situation continues, more women could be missing out on the best chance of getting an early diagnosis and the best chance of beating the disease. It is vital—and something that we have been pushing for for a long time—that we get a clear sense of how we are going to tackle that backlog, because it is so important.
The hon. Members for Wakefield (Imran Ahmad Khan) and for Crewe and Nantwich (Dr Mullan) mentioned the importance of mammograms. As we know, they are a key tool in early detection. There is a plan to send open invitations for screening from September to March of next year. That has caused some concern among cancer charities, because some of the research shows that the number of women who make appointments is significantly lower than those who actually attend timed appointments. There is a fear, sadly, that this could actually worsen the persistent decline we have seen in recent years of the uptake of breast cancer screening. We are particularly concerned about the impact that will have on some groups where uptake is already low, such as those living in deprived communities and some BAME groups. We heard a little bit about the impact on BAME groups from my hon. Friend the Member for Dulwich and West Norwood, and both she and the hon. Member for Winchester (Steve Brine) very powerfully put into words the additional mental toll that this disease has during this time, on top of everything else that people ordinarily face when they have received such a diagnosis.
Several hon. Members mentioned the impact of covid-19 on secondary breast cancer patients. It is still, sadly, the case that around 11,500 people—women, mainly—die from breast cancer each year. Most of those are to do with secondary breast cancer, and as we have heard, it is not something that there is a cure for at the moment. It is estimated that around 35,000 people in the UK are living with secondary breast cancer. As the general population ages and people live longer, numbers will continue to increase, so it is really important that we get a better understanding and response to secondary breast cancer. We also need to look at this issue from the patient’s perspective.
I want to mention my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams), who wanted to speak in today’s debate but could not. She wanted to pay tribute to one of her constituents, Jo Taylor, and to METUP UK, which focuses on making positive changes for everyone with metastatic breast cancer. Its “busy living with mets” campaign calls for increased awareness of secondary breast cancer, because catching it earlier leads to better outcomes. It is also campaigning for better access to drugs, clinical trials, radiotherapies and surgical pathways.
As the hon. Member for North Warwickshire mentioned in his opening comments, the national cancer patient experience survey tells us that the experiences of patients with secondary cancer differ greatly. It has identified gaps through the taskforce in the support and services offered to people, including variation in access to clinical nurse specialists, patchy provision of information, patients’ psycho-social needs not being met, and a lack of prompt and timely access to palliative care services.
As we have heard from several hon. Members, clinical nurse specialists play a critical role in co-ordinating care, providing information and helping people to manage their diagnosis and treatment better. In fact, Breast Cancer Now reports that the support of a clinical nurse specialist is the single most important contributing factor to people’s positive experience of care. That is particularly important for secondary cancer patients, who are often on lifelong treatments and have complex needs as a result. Its importance was acknowledged in the long-term plan, with a commitment that by 2021—it is only six weeks away now—all patients, including those with secondary cancers, will have access to a clinical nurse specialist or support worker.
It is very important that we get to a point where everyone is able to take advantage of the expertise that a clinical nurse specialist provides. Prior to the pandemic, the workforce was already overstretched and under pressure due to increased demand and persistent shortages across the workforce. A report by the Public Accounts Committee was highly critical of the Government’s approach to the workforce, finding that the long-term plan was not supported by a detailed workforce plan. Of course, the removal of the NHS bursary in 2017
“signally failed to achieve its ambition to increase student nursing numbers.”
Before I conclude, I want to echo what the hon. Member for Strangford said about the importance of charities in this sector. We know there is a great deal of concern in the sector. I know that some support was announced by the Government back in April, but it falls well short of what was suggested by the associations involved, and only a few have been able to benefit from it. I hope the Government will listen to the sector and look again at what additional financial support can be provided, because we know that clinical trials provide a vital opportunity for patients to access new treatments, which are always in development. We know it is particularly important for patients with secondary breast cancer. We hope that is something the Minister can take on board today, and I look forward to hearing her response.
It is a pleasure to serve under your chairmanship, Mr McCabe. I have an awful lot to cover and less than 10 minutes to respond, if I am going to give my hon. Friend the Member for North Warwickshire (Craig Tracey) time to sum up. I congratulate him on securing the debate and on the important work he does running the APPG on breast cancer with his co-chair. I know that he has been a fundraiser for breast cancer and that, like me, he came to this place with tackling this issue as one of his key ambitions. We will get there.
As my hon. Friend the Member for Winchester (Steve Brine) said, everyone with breast cancer is a mum, a sister, a daughter or a friend. Some 3% of them are now fathers, sons and brothers. I am grateful for the contributions to the debate. A debate such as this allows us to park much of the politics but talk about what is really important here: the patients, and the outcomes for them.
Early diagnosis is key, and hon. Members have outlined the challenge that covid has brought. I thank my hon. Friend the Member for Crewe and Nantwich (Dr Mullan), and indeed the hon. Member for Ellesmere Port and Neston (Justin Madders), for outlining just how challenging covid-19 has been for the NHS and how it has responded to an unprecedented event in an unprecedented way. I reassure all hon. Members that in the second wave, we have made sure, as we have heard from many hon. Members, that cancer services are prioritised and remain.
I pay my own tribute to my hon. Friend the Member for Chatham and Aylesford (Tracey Crouch), who has written to me because she would have liked to be here today and who is currently in treatment, as well as to my hon. Friend the Member for Norwich North (Chloe Smith), who is currently having treatment, the former Member for Dewsbury, who has been mentioned, and the former Member for Eddisbury, who is having her own challenge living with cancer. It is around us all. I well remember the emotional tsunami that diagnosis brings. As my hon. Friend the Member for Chatham and Aylesford said in her letter, because she is always the same with language, “Cancer sucks”. I could not agree more. I wish them all the best on their journey, as I do every patient through their treatment.
I am really aware of how covid-19 has upended our lives, but clinical decisions had to be made in March. We were dealing with the unknown and we had to protect people and highlight priorities. For those who have had their cancer treatment or surgery changed or delayed, I understand the uncertainty and anxiety they have had on top of that diagnosis of cancer. For patients and their families, this is a really tough time. We must have a laser focus on early diagnosis, as was laid out in the manifesto, and we must not veer from that. I do not want covid-19 to be the derailer; I want us to seize some opportunities that have come about.
Although it makes it no less bearable for those affected, the decision to pause some patients’ treatment in the first wave was taken on clinical advice that factored in the risk to the most vulnerable. As soon as it was possible, however, the NHS was charged with restoring cancer services as quickly as possible, and it has risen to that challenge. I meet with Cally Palmer, who was mentioned earlier, and Professor Peter Johnson often—at points weekly—to make sure that we are doing everything we can.
Across the country, there are 21 cancer alliances and their cancer hubs. My hon. Friend the Member for Carshalton and Wallington (Elliot Colburn) outlined the amazing work done at the Royal Marsden to bring hospitals across the capital together to optimise safe theatre space to deliver treatments and so on. We have asked for that approach to happen across the country to ensure that we optimise treatment. I hear my hon. Friends the Members for Wakefield (Imran Ahmad Khan) and for High Peak (Robert Largan), but it cannot always be on the doorstep at this time; we have to have a bit of flex. I will happily meet my hon. Friend the Member for High Peak to talk about his particular concerns.
I join my hon. Friend the Member for North Warwickshire and other hon. Members in recognising the tremendous efforts of the cancer workforce. In forming those cancer hubs and the rapid diagnostic centres, people have moved mountains to care for the patients they look after every day. Ultimately, they are the ones on the frontline to ensure that breast cancer services are there when we need them, and our thanks go to them.
The latest official data for September, which was published only this morning, shows that urgent two-week GP referrals across the entire spectrum of cancers are 2% higher than last year and they continue to rise for all cancers. In breast cancer, we have seen a month-on-month rise of more than 15% from August to September, but we still have work to do; I am not going to stand here and say that we do not. There is still a way to go to meet current demand and improve on that rise for those who are waiting for treatment.
More than 86% of people saw a cancer specialist in September within two weeks of their referral from a GP, and nearly 95% of patients received treatment within 31 days of a decision to treat. I know precisely how long every day feels when people have had a diagnosis. I have had tumours in both breasts and other primary sites. The wait is anxious. It is terrifying. Your mind asks, “Who will pick the children up?”, and, as my hon. Friend the Member for Winchester said, a million other unanswerable questions every single day.
There have been some bright spots and some innovative treatments that have moved the profile of the disease further forward. I personally—this is an ambition of Breast Cancer Now—want to see the eradication of breast cancer by 2050. We must work to that, because it is possible. As we have a 98% ability to treat testicular cancer, we can do better. Breast cancer should not claim the lives of over 11,000 women a year. I want to see it put back in its box.
Breast cancer treatments are advancing. This year has been no exception, with advances in radiotherapy and chemotherapy. We have seen oral chemotherapies that are easier to deliver and better for the patient. We have seen the publication of the FAST trial, which looks at five-fraction radiotherapy to treat early breast cancer. I thank the hon. Member for Easington (Grahame Morris), who is no longer in his place, and the other members of the APPG on breast cancer who came to see me. That treatment enables individuals to be treated quicker with fewer hospital visits. When we are fighting covid-19 and we are trying to keep people out of hospitals, it is better to minimise visits. All radiotherapy providers in England are adopting this approach. Yes, we have challenges with the workforce, but radiotherapy did remarkably well at keeping itself going through the pandemic.
I will try to cover as many of the different issues as I can, but I barely have any time left. They will drag me out of here with my nails pulling on the carpet. Clinical nurse specialists are important, valued and flipping marvellous—we all need one. Some 350 extra clinical cancer nurse specialists were allocated in the long-term plan, but we need to work together. I am working with Andrew Strauss and my right hon. Friend the Member for Old Bexley and Sidcup (James Brokenshire).
Cancer nurse specialists need to come from the existing workforce. They must be encouraged to do further training. We need to ensure that it is seen as a career path that really does have that purpose. Boy, oh boy, when one needs a cancer nurse specialist— they save the oncologist and one can phone them to ask about one’s niggles—they do amazing things. I want to see everyone come together, including the charities, to encourage nurses to come forward and help the community.
I met with the secondary breast cancer women before the pandemic. The situation is variable, and that is not good enough. The journey of a woman who has a cancer nurse specialist by her side is not an easier journey, but it is one where they feel supported. They have someone there. My cancer nurse specialist helped me to get some of the psychological counselling that colleagues have spoken of. I was angry and ticked off that I had that disease again. We need to encourage people to sign up to do that additional training. The money is there.
Data needs to be better. I could go on about data, screening and clinical trials, but I am aware that I have such little time. The majority of clinical trials are open for registration. I am urging local decisions to be made to get people reinstated and on to clinical trials. We have opened up screening with open invitations to try to get more women through. We know we have an issue with women not attending their appointments. We need to make people feel safe when they go to have their screening test in a hospital. Unless they feel safe, they will not go. We must work together to say, “It is open, but you have to go. Our NHS is a really precious resource. If you have an invitation, take it up and go to see the professionals who are there to help you.”
I wish I could say more, but I want to give my hon. Friend the Member for North Warwickshire a second or two to sum up. I thank everyone working on the frontline. Advances are happening; there is more to do. I am happy to work with my hon. Friend on an audit. We need to get better data. It is collected, but not in a good enough format. I want to see us do better in all those areas.
I thank the Minister. It is far better that we heard from her than from me. She has tackled this issue in the forthright way we have come to expect. Coming into this debate, I knew that we were in the right hands and I am even more sure of that now. I also thank other colleagues who participated in the debate, not just for their contributions but for the way the debate has been conducted. That is the message—
It has come to my attention that the Order Paper states that the debate will start at 3.30 pm. I am advised that that is a mistake. I will work on the assumption that most people know it is 3 and they are here. If anyone inadvertently turns up later, we will make allowances for them on that basis.
I beg to move,
That this House has considered the effect of the covid-19 outbreak on people affected by dementia.
It is a pleasure to serve under your chairmanship, Mr McCabe. I am really happy to have been able to secure this debate with the hon. Member for Strangford (Jim Shannon) on a topic that is important to so many of us.
I am proud to be the co-chair of the all-party group on dementia and to work closely with the Alzheimer’s Society, which supports people living with dementia and their carers. We campaign on the issues that matter most to them. This debate is about the effects of covid on people with dementia and their carers. I will focus my remarks on the Alzheimer’s Society’s September report, “Worst hit: dementia during coronavirus”. The society undertook that collated work to assess the impact of the first wave of covid. I shall also discuss briefly the impact of covid on dementia research, particularly in view of the fact that we are approaching the comprehensive spending review statement later this month.
What has been the impact of covid on people living with dementia? People with dementia have unfortunately been among the worst hit by covid: they have experienced disproportionate loss of life, and those who live in care settings have been separated from their loved ones for many months. The Equality and Human Rights Commission has said in relation to older people, including those with dementia, that
“There is evidence that human rights standards may have not been upheld in the response to the pandemic…We are further concerned that equality considerations were not effectively and transparently built into decision-making at the national, regional and local level, both in terms of the immediate risks from coronavirus and the wider impact of restrictions. This may have resulted in failures to comply with the public sector equality duty.’
That is damning indeed, but on top of that, since March there has been a worrying decline in diagnosis rates for dementia, which were already low. There is some evidence that covid affects the brain and nervous system, as well as other systems in the body, and this needs to be monitored, particularly in relation to covid’s longer-term impacts.
In addition, we must not forget the family and friends who are carers, in my constituency and across the country, who have provided millions of additional hours of care during and between lockdowns. With no shielding support whatsoever, they have been feeling the strain from that lack of support during the pandemic.
To understand the scale of the problem facing people affected by dementia, I thought it would be helpful to share with colleagues information about the scale of dementia itself—of course, many colleagues will already be familiar with this information. In my local authority in Oldham, there are approximately 2,250 people who are currently living with dementia; across the UK, there are approximately 850,000 people living with dementia; and globally there are more people living with dementia than the entire population of Spain. A third of people born in the UK will develop dementia during their lifetime.
I know that most—if not all—of us here today have been touched by dementia in some way, as I was when my mum was diagnosed with Alzheimer’s disease, the most common form of dementia, at the age of 64. I want to highlight the fact that, contrary to popular belief, the majority of people with dementia—more than 60% of the total number—live well and live in the community. However, people with dementia account for over 70% of residents in care homes. This pandemic has laid bare and exacerbated inequalities across our country, and that is particularly true for people living with dementia and their carers.
Colleagues will be as horrified as I was to hear about the disproportionate death rates among people with dementia. Between March and June, over a quarter of the people who died with covid-19 in England and Wales had dementia. Dementia was the most common pre-existing condition in deaths involving covid, although it was never identified as a condition that made people clinically vulnerable. That is the reality we are presented with today, and it prompts the question whether people with dementia and their carers will now be given the proper support to be shielded. The miserly £14.60 per person that has been provided to local authorities to support the clinically vulnerable for the entirety of this second lockdown is, quite frankly, derisory.
In addition to those deaths from covid, there has been a sharp rise in excess deaths of people affected by dementia. Between January and July, 5,049 such deaths were recorded, and during the early peak of the pandemic excess deaths were double the five-year average. These excess deaths happened not only in care homes but among people living at home, with a rate 79% above the five-year average between the middle of March and the middle of September. We must ensure prompt and safe access to health and care services for people with dementia throughout the pandemic.
Why have people with dementia been dying in such high numbers? Various factors appear to be involved, with some undoubtedly contributing more than others. The risk of severe covid outcomes rises steeply with age; 94% of covid deaths between March and June were of people over the age of 60, and we know that people are more likely to develop dementia as they grow old. Evidence is emerging that suggests having dementia may increase the risk of severe covid symptoms and death when age and other conditions are taken into account.
Importantly, coronavirus can present itself differently in care home residents. A sizeable proportion—nearly one in five—of nursing home residents who tested positive for covid were either asymptomatic or had only atypical symptoms. They had no fever or cough, but often had a change in mental health status or behaviour, anorexia or digestive problems. That might also have contributed to the challenge of detecting and preventing the spread of covid in that population.
Perhaps the biggest contributor to the high death rate is where a person lives, whether in a care home or in the community. All of us here today have heard from local care homes and constituents about the serious challenges that have been faced in care homes, from unsafe discharges through to the lack of personal protective equipment and sporadic testing. Although we have made leaps forward in care home safety, I hope the Minister will commit today to ensuring that social care is on an equal footing with the NHS in terms of PPE and testing, and will respond to the issues raised by the EHRC. Looking forward, will she also ensure that the social care sector, including social care providers and experts in the third sector, as well as service users and their families, are involved in long-term developments for the sector?
I also want to speak up for the hundreds of thousands of informal carers across the UK, who are too often forgotten. It is unclear whether the lack of access to friends and families is affecting the progress of dementia, but one thing is clear: the emotional distress of not being able to see or touch our loved ones is very real. One of my Saddleworth constituents wrote to me:
“As the country pays its respects to those who fought and died for our freedom, let’s not forget that some of our war veterans, like my father, are still alive today. He like many others is locked away in a care home, having endured 8 months of separation from his family with no end in sight.”
Another constituent told me:
“My mother has been in a care home with worsening dementia for over three years. She is 96. I cannot see her and can’t even speak to her on the phone as she is almost deaf. It is heartbreaking to know that there is a very real possibility that I may never see my mother again, as visitors are barred from the care home. My mother probably believes her family have abandoned her.”
That is a dreadful thing to feel. With the roll-out of lateral flow testing, will the Minister commit to ensuring that family carers are given key worker status, are included in the care home testing protocols and have access to PPE, so that they can visit their relatives and provide the loving family care that is so desperately needed?
As I mentioned, most people with dementia live in the community, and one third live alone. I have already mentioned the amazing job that more than 700,000 carers do. Without them we know that the social care system would collapse. The pandemic has taken a significant and additional toll on many. The Alzheimer’s Society found that families and friends of people with dementia have spent an extra 92 million hours caring for loved ones with dementia during the pandemic; that is on top of the 100 hours or more a week of care that more than 40% of family and friend carers reported providing for their loved ones. For some that was on top of a full-time job. That dedicated group of people deserve more support as they struggle to care for their loved ones among their myriad other responsibilities.
Will the Minister today guarantee that where home care for someone with dementia has been stopped owing to coronavirus, it will be reinstated without any formal assessment? Will she also ensure that carers’ assessments are carried out; that short breaks are provided for people with caring responsibilities; that local authority data is collected on the provision of those services; and that the Government fulfil their commitment to do whatever it takes by properly reimbursing local authorities for the additional work that they are doing and the additional funding that they have spent during the pandemic?
I have already mentioned that people with dementia were not included in the Government’s formally shielded group in the spring. However, given what we know now about dementia being a significant clinical risk for covid morbidity and mortality, I am pleased that the Government have recognised that and are introducing a risk stratification for covid similar to that used for assessing heart attack and stroke risk. Will the Minister provide an outline of how that tool will work, including when she expects it to be available for use, and in particular what support will be available for those considered at risk?
As I also mentioned, the impact of covid had an impact on the diagnosis rate. It is well below the already low target of 66.7; it now stands at 63%. That means more people are living without a diagnosis of dementia and are unable to access emotional, practical, legal or financial advice, as well as the therapies associated with diagnosis. Memory services are adapting to open virtually, which is a welcome interim measure, but there is urgent need for a catch-up on waiting lists to ensure that the freefall in dementia diagnosis rates does not continue, and a virtual appointment is not the place to deliver a life-changing diagnosis. I will be grateful if the Minister can do all that she can to ensure that memory assessment services reopen in person at the earliest opportunity.
Finally, I want to raise the issue of dementia research as we look through and beyond the pandemic. The Conservative general election manifesto last winter pledged an extra £800 million over 10 years for dementia research—the “Dementia Moonshot”. I support that. The UK’s exceptional research into dementia prevention, therapies and care is already well under way. We have the second biggest research network on dementia in the world. We must not let that go. There are always new challenges. As I said, recent research has found that the neurological complications of covid can include brain inflammation, delirium and nerve damage. We need to be monitoring those types of effects on a long-term basis.
Unfortunately, much of the research that had been under way has been delayed during covid, with medical research charities, which do vital work to support early-career researchers, facing a 40% shortfall this year. A third of dementia researchers are already considering leaving the field. Losing that research talent would have a severe long-term consequence for dementia research, and ultimately for people with dementia. We cannot lose that innovative work. Let me give an example: the UK Dementia Research Institute’s care, research and technology centre has been developing tools and technologies to enable people to live in their homes as long as they can, reducing isolation and minimising the impact on the NHS and beds. Will the Minister confirm that the spending review later this month will fulfil the commitment to dementia research and provide the financial support that such organisations need? Research provides hope of a cure in the future, as well as developments in social care, technological innovation and public health advances to address the care needs of today.
Dementia is often an overlooked condition, but it is a condition that affects so many. People with dementia have been among the worst affected by this pandemic, and I hope the Minister will do all she can to ensure that we do not see such loss of life, strain on carers, and loneliness again as the pandemic progresses. I also hope that we see a long-term and fair funding solution for social care soon, which has the needs of people with dementia at its heart.
I am pleased to follow the hon. Member for Oldham East and Saddleworth (Debbie Abrahams).
At the end of September, more than 812 patients over the age of 65 were recorded as having dementia across GP practices in Tatton. Many of those patients’ family and friends, and people who work with them, have asked me to speak, including Lorraine Albiston, Simon Brazendale and Suzanne Jeans from Knutsford, and Victoria Caruana and Sue Kisloff from Wilmslow.
Like others, I have heard truly harrowing stories about how those with dementia have not been able to see family members. They feel abandoned, at a loss and confused, not having contact, conversation or physical affection. The Alzheimer’s Society says that for people with dementia, lack of social contact is not only bad for their mental health, but has a significantly negative effect on the progression of their dementia.
That was the case for Sue Jeans’ mum, Jackie. Sue has only been able to see her mum three times since February, when the home stopped all visits, meaning she has seen her mum for 50 minutes since February. While she supported the decision to stop visits in February, she does not now. Nine months later, there must be better ways of doing things. Sadly, this lack of contact has led many people to die sooner than they would have been expected to. Between January and July this year, 5,000 more people than usual died of dementia—that is 52% higher than normal.
Sue is not alone. Lorraine Albiston lives in Knutsford, but her mother lives two hours away in a care home in Worcestershire. The home allows a 20-minute visit once a week, in a gazebo with no heating, meaning that visits are often cancelled due to bad weather and only one or two people can visit at a time. As Lorraine has four siblings, that means she cannot see her mother as regularly as she would like to.
I know that in Tatton and across the country care workers, family members and helpers have worked tirelessly, and I put on record my thanks and appreciation to all those people. Oliver Stirk, director of Carefound Home Care in Wilmslow, told me that their carers have adapted to the situation. Their patients are no longer now allowed to go to the pub to have a Sunday lunch, so his carers are cooking for them at home, so they can have some kind of enjoyment. They have also done much to support the families to get online.
Lisa Burrows, the general manager of Sunrise of Mobberley, told me how her team have implemented an enhanced infection control programme. Furthermore, they are doing their best to do numerous social distanced garden visits and are in the process of introducing dedicated visiting rooms. I also want to mention the members of Knutsford Methodist Church, who provide valuable support for carers through their Friendship Café, run by volunteers led by Paula Lambe and Eve James. However, that has not been able to happen, as it usually does every Friday.
There are grave concerns about the Government’s decision to ban almost all visits and about the lack of input from Public Health England to guide care homes’ approach to this pandemic. I have these questions for the Minister: first, what are the Government doing to address the needs of people affected by dementia and of their family and friends? Secondly, someone’s experience may differ greatly depending on the home they are in, so what are the Government doing to facilitate and encourage a common approach between care homes and to ensure that lessons learned at one care home are shared among others? Thirdly, what is being done by the Government to rebuild trust in the vital social care sector?
Finally, I commend the Daily Mail on its Christmas campaign. I will conclude with the words of an elderly constituent who said to me, “I want to live before I die, and at the moment, with all these confusing lockdown rules, I can’t.”
I congratulate the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) on securing today’s debate. It is obviously an immensely important and sensitive topic, and it is right that it should be brought to the attention of the House.
We all know that the pandemic has caused great heartbreak across our country, nowhere more than in our care sector. Our care homes do vital work looking after the elderly and infirm and we owe them and their dedicated managers and staff a great debt of gratitude after all the challenges they have faced over the past year. I have had several very productive meetings with them in Middlesbrough South and East Cleveland. They want to do their best for the people in their care and their families, and some have shown great ingenuity in seeking to ensure that visits from loved ones are still possible.
None the less, as we have just heard from my right hon. Friend the Member for Tatton (Esther McVey), we know there is a real issue with family access for many sufferers with conditions such as Alzheimer’s and dementia, and that it is taking a devastating toll. That pain is not measured simply in mortality numbers; for many of the families of the sufferers with those conditions, it is the deterioration in their loved ones’ capabilities during the isolation they have endured this year that is particularly concerning.
We know that many residents in care homes have had hardly any visits, and some have had no visits, since the crisis began in the spring. How deeply sad that can be has been brought home to me by a number of moving messages from constituents such as Kelly Holmes from Coulby Newham. Her dad was diagnosed with dementia in February last year, and he does not understand why it is not possible for Kelly and her mum to visit. He regularly rings them, distressed and confused about why they have not visited and worrying that no one cares about him. The repetition of that conversation is obviously deeply distressing for the family.
Rebecca Skelton from Nunthorpe has spent 90 minutes in the past eight months with her mum, Ann, who suffers from dementia. She said:
“Before Covid my mother could not converse with me and my family but there was always a smile of recognition when going to visit her, as though she still knew who we were. The thought of not having this when I do get to see her is breaking my heart and causing me severe depression. The thought of her feeling that we have abandoned her by not visiting is causing more anxiety, I only hope that the smile is still there when I do get to see her.”
I have received so many other messages. I thank Mr Malcolm Guest, a constituent of my hon. Friend the Member for Redcar (Jacob Young), who raised the case of his mum Annie; and Lesley Turnbull, who contacted me on behalf of her husband Tim, who has Lewy body dementia. Her words have really stayed with me:
“I have begged him not to give up and I got a reaction, I always get a reaction when I say I will be with you soon.”
In the limited time available, I will make a simple plea: some of the new lateral flow tests—it is great news that they are being rolled out across large parts of the country, including to all authorities in the north-east—ought to be prioritised so that relatives can have access to their loved ones in care home settings. My hon. Friend the Member for Redcar and I have already written to the director of public health for Middlesbrough and Redcar and Cleveland with precisely that request, and I hope that the Minister might offer her thoughts on it. More broadly, I welcome the Minister’s commitment a few weeks ago to explore giving family carers key worker status. I hope that can be actioned, because it could make a real practical difference.
Finally, it would be remiss of me not to acknowledge the real upsurge in hope brought about by this week’s news of the Pfizer vaccine, which is obviously fantastic. I strongly support the Government’s proposed prioritisation of those who will receive the vaccine as soon as the necessary checks have been finalised and roll-out can begin. We must resist the toxic anti-vaccination propaganda that is circulating alarmingly widely on social media and state the truth that effective vaccination will be the end of covid-19 and will pave the way to ending the suffering of so many of our constituents living with Alzheimer’s, dementia and so many other conditions, and the suffering of their families. It can and will restore the love, company and sense of belonging that we all wish to experience at the sunset of our lives. It cannot come too soon. I commend the efforts of the Minister and her colleagues in helping to make sure that we are ready, as a society, as soon as the vaccine is ready to be given to the public.
It is a privilege to serve under your chairmanship, Mr McCabe. I congratulate the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) on securing this important and time-sensitive debate. It is a privilege to follow my hon. Friend the Member for Middlesbrough South and East Cleveland (Mr Clarke).
I am sure that hon. Members will recognise similar letters to this one from my mailbag:
“I have only been able to see my lovely Mum twice since 15th March…(241 days.) We have seen her through the window from the garden. The staff are very good and have usually moved Mum’s bed closer to the window so that we can see each other more easily. But we can’t hold her hand.”
That is just one of the heartbreaking messages that I have been sent ahead of the debate. Those words ring with the sound of sacrifice and emotional distress, and of the forbearance asked of those with Alzheimer’s and their families and friends in this crisis.
People live with Alzheimer’s in a number of settings. My constituency has a significant cluster of excellent care homes—69, in fact, which I know because my team and I have called them several times, first regarding food supplies, then PPE, and then testing. We have always known that they would be at the epicentre of this health crisis, and that their residents would be the most vulnerable. I take this opportunity to commend local carers and to pay heartfelt tribute to their work during this time. Our higher-than-national rate of covid diagnosis is testament to their dedication and means swifter care.
Out of the present crisis, I am pleased to say that new, stronger relationships and communications have been forged between our care homes and our local hospital and its community teams. That can only be good for more joined-up thinking and more joined-up work, with a new named lead now for each setting. In the summer, at a “spade in the ground” ceremony, I met the family directors of Hallmark Care Homes at their new project in Kings Drive. We spoke about their concerns, with their request to Government being: “Hear us, recognise the centre, bring us in to shape the future.”
It was interesting to hear how—even then, back in July—the covid crisis was already influencing the design of this new building, where we stood in the footings. Swift design changes will mean new safe, green routes through the home, creating all-weather visiting spaces. It also means a whole new level of tech to provide residents with a digital window on the world.
For people who are living with Alzheimer’s at home and are reliant on support from day care centres, such as the excellent Ivy House in Eastbourne, forced closure and severed connection has been especially hard for all parties. In more extreme cases, it has been dangerous for the sufferer, and almost unbearable for those who care for them. We cannot find ourselves in this situation again. Individual risk assessment is key, and an essential service designation vital, so that the work of day care centres for the dementia community in my home town is safeguarded.
In 2015, the then Prime Minister set an ambitious 2020 dementia challenge. Funding for vital research has been increased, and diagnosis rates have increased. With programmes such as Dementia Friends, awareness has increased too. There is change and there has been progress, but we must continue with new urgency to take up the deeper, wider reform of social care. Let us dare to reimagine it. There will be a wealth of learning from this pandemic about the solutions that we need to put in place to better protect people affected by dementia during the pandemic and beyond. That is the view of the Alzheimer’s Society.
I know that all hon. Members are concerned for their constituents, as am I. I am keen to hear further from the Minister, and I do not underestimate the challenge. Good work is being done, and I know she is committed to getting it right.
[Sir Graham Brady in the Chair]
It is a pleasure to serve under your chairmanship, Sir Graham. I thank my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) and the hon. Member for Strangford (Jim Shannon) for securing this important debate, and I am pleased to follow the hon. Member for Eastbourne (Caroline Ansell).
I want to start by talking about my constituent Tracy Gothard. Tracy released a video of what happened when she visited her mum Doreen, who has dementia, in a nursing home in Bradford. In the clip, we see what so many of our families are currently going through. Hon. Members might have seen the footage. In it, Tracy and her sisters stand outside and speak to their mum in the car park through a closed window. Doreen asks Tracy to come inside and motions with her hand, to which her daughter replies “I can’t come in. We are not allowed yet because of that nasty bug.” Doreen’s face crumples, and she breaks into tears. It is a heartbreaking video, and I do not think that anybody can watch it and not be moved to tears.
The window meeting between Tracy and her mum was the first one that they had since August, when Bradford was placed under local restrictions. I asked Tracy what she would like me to say to the Minister on her behalf in this debate. She said:
“I’m begging from the bottom of my heart to give key worker status to just one family member, to help us see loved ones in care homes. This has now been ongoing for too long, and in my 51 years of life, I have never not seen my mum, especially at Christmas. I appeal to your better nature, on behalf of myself and thousands more, to not let this continue.”
Tracy speaks on behalf of everyone who has a loved one with dementia in a care home. Anyone who has cared for someone living with dementia knows that regular contact with family members keeps that spark inside alight. Digital visits are simply not appropriate, as people with dementia view the world differently. Memory clinics must reopen, and they need to be in person. As virtual memory clinics, they cannot simply replicate the quality and appropriateness of a face-to-face appointment for anybody living with dementia.
The Government need to recognise that family carers play an essential part in caring for people with dementia who live in care homes. When family carers are unable to visit and provide that care, the health and wellbeing of people with dementia can seriously decline at a rapid pace. I fully support the call by the Alzheimer’s Society and others to designate at least one informal carer per care home resident as a key worker, with access to testing, training, PPE and, when they come, vaccinations. The Government must urgently speed up their action on this issue, as time is not on our side. Will the Minister clarify whether an adult caring for an adult with dementia can form a support bubble with another household? The regulations are not explicit on that, and our carers need that support.
Finally, I want to quote from the hard-hitting report by the Equality and Human Rights Commission. It states:
“There is evidence that human rights standards may have not been upheld in the response to the pandemic, including in key decisions about hospital discharges, care home admissions, visits, access to critical care and prioritisation of testing, putting people with dementia and other care home residents at greater risk of harm.”
That should be a wake-up call to us all: inaction is not an option.
It is a pleasure to serve under your chairmanship, Sir Graham. I add my thanks to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for securing this debate. Its importance is exemplified by the fact that my postbag has also been full of requests from constituents asking me to come along—I am therefore very grateful to her for securing it—and by the fact that, based on recent trends, it is estimated that well over 3,000 residents over the age of 65 in the London Borough of Sutton, where Carshalton and Wallington is situated, will be living with dementia by 2030. That is 38% higher than it is today.
Living with dementia can be incredibly scary and worrying, and it also has an effect on family and friends as they watch someone they love slowly deteriorate. My family had to go through that with my grandfather, Derek—it was one of the toughest times we went through. The family and friends of somebody living with dementia suddenly find that they are carers first, and family and friends second. As time passes and they start to recognise less of the person they love, that person sadly also recognises less of them.
The situation with dementia care was already incredibly challenging prior to the pandemic, which has only exacerbated the problem. As other hon. Members said, the Alzheimer’s Society has produced a hard-hitting report, entitled “Worst hit: dementia during coronavirus”. I want to highlight and repeat some of its stark findings, not least of which is the fact that 27.5% of all those who died from covid-19 between March and June had dementia. For the same period, dementia was the most common pre-existing condition for covid-related deaths. For people who survived the crisis, the effects of social isolation were severe. The survey shows that 46% of people with dementia reported that it had a negative impact on their mental health and 82% reported a deterioration of the symptoms of dementia. As has already been highlighted, 92 million extra hours have been spent by families and friends caring for a loved one with dementia, and 95% of carers have reported a negative impact on their physical or mental health.
The Alzheimer’s Society has two key asks for the Government—one for the short term as we continue to deal with the pandemic, and one for the longer term. The shorter-term ask is that we recognise the role that informal carers play in the lives of people living with dementia, as the hon. Member for Bradford South (Judith Cummins) outlined well. I am repeating what other hon. Members have said, but this is important. The asks are for at least one informal carer per care home resident to be allowed to be designated as a key worker, with access to training, testing and PPE. The Alzheimer’s Society asks that the Government ensure the delivery of carers’ assessments, provide short-term breaks for carers, and collect local authority and health authority data on carer assessments and respite care.
I do not think it will be surprising to hear that the second recommendation is about the long-term future of social care. I have a background in the national health service, so this is something that I am incredibly passionate about. I genuine believe that, alongside the long-term plan for the NHS, there has to be a long-term plan for social care, and the two must be integrated. We need to tackle not just the cost of care but problems with the care workforce, including career pathways, recruitment and retention.
Change is often unnerving, but to a person living with dementia an upheaval of the likes that the pandemic has brought is nothing short of terrifying. Indeed, if my grandfather was still alive today, I am genuinely not sure how either he or the family would have got through the last couple of months. I hope the Minister will look carefully at the Alzheimer’s Society’s report and its recommendations.
How the mind sits within the brain is still one of the great mysteries, I guess. I do not know whether Members have seen the ballerina Marta González listening to the music from “Swan Lake” and just beginning to be able to remember the choreography from years before. That inspired in so many a deep sense of that complicated relationship, where there is clearly a mind that has memories, but it cannot quite make the brain do what it wants it to do.
I wanted to speak in this debate because my family has been through quite a lot of that this year. I will talk not about that specifically, but about some of the things that have been common to many people in the country this year. Because many families have been isolated from other parts of their families, they have often not been able to check up on the elderly as frequently as they might want. They may not have been allowed to visit, especially if they are in different parts of the country, and they will not have been able to see the oncoming early signs of dementia. Doctors have sometimes simply been unable to diagnose, because they could not be in the physical presence of the person about whom there are concerns—diagnoses are a third down on normal, as we heard earlier.
The virus itself has, of course, added considerably to levels of anxiety, depression and a sense of paranoia in many people, with a growth in conspiracy theories. That has all added to the complications for families dealing with people who have early-onset dementia or other forms. The virus has direct neurocognitive effects that we are only just beginning to understand.
People have also had dietary issues, because they have not had access to the same kind of food as they might normally. That may well have added to their delirium, which, on top of dementia, can make it more difficult for people to go into care homes. They may need psychiatric support rather than care home support. Yet again, families are finding it terribly difficult during this time.
Families have found it very difficult to get help. The immediate instinct, once the diagnosis has come in, is for people to think about whether they can bring their family member into their own home. If that is not possible, they think about the other support there will be. Care homes have been up against it. There have been terrible anxieties about whether people have other comorbidities that will make it more difficult for them. Many families feel as though they have been bashing their head against a wall.
On top of that, of course, although lots of people had sorted out lasting power of attorney long before, which I would encourage everybody to do if they can, when I rang the Court of Protection, the emergency officer told me that emergency cases might be seen in nine months’ time. Sorting that out for an individual family member may make the difference between whether it is possible to get them into a care home and get them the support they need or not. Nine months—we cannot have that kind of backlog. That is a kind legal misery of the state on top of everything else.
I have done a lot of work on brain injury and some of the things are very aligned. It was terribly depressing to see the family of Bobby Charlton announce the other day that he has dementia, probably from concussion from heading the ball. I am sick and tired of people saying, “Oh well, the ball’s not as heavy as it used to be.” Did nobody do physics at school? It is about the speed of the ball, not the weight of the ball.
There is a lack of neuro-rehabilitation. A quarter of all major trauma centres still do not have a neuro-rehabilitation consultant. Some 57% of patients who have acquired brain injuries still complain that they are unable to get their full support. There is a massive funding crisis for all the organisations that work in that field, such as Headway, the UK Acquired Brain Injury Forum and many others.
My heart goes out to everybody, and my heart sort of goes out to the Minister, because there is a lot to deal with, but I do not think we will be able to do that unless we look at all these issues in the round. The one thing that I beg her to do is to set up a cross-departmental ministerial team that looks at it from Defence, Work and Pensions, Treasury, Health and Social Care—all the different Departments—so that we can really turn this around.
I, too, thank the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for her very impressive speech. As she said, it is a desperately important and overlooked subject, as has been eloquently expressed by many right hon. and hon. Members.
I come to this debate with two points of view. First, I want to give voice to my constituents in Clwyd South who have asked me to speak this afternoon. Secondly, I have a personal point of view, as my mother-in-law Alina had Alzheimer’s and my wife Maggie and I set up the Concertina charity about 25 years ago, which provides live music for the elderly in care homes and day centres across Wales and England. This not only brightens up their lives, but provides vital therapy for those suffering from dementia.
With regard to my constituents, I would like to comment on a letter I received from Gillian Molloy, who wrote to me about her experiences. She said:
“My husband has been in a care home suffering vascular dementia since November 2017. Before Covid-19 I visited him 4 times a week staying with him for 3-4 hours, mostly holding his hand, talking and playing the music he likes. Since March of this year I have only been able to see him for a period of half an hour 4 times, supervised by a carer. The lack of this stimulus, knowing my voice, smell and reassurance I am sure has been a contributing factor to his withdrawal and decline. He no longer makes eye contact or speaks to me. I find this very upsetting and stressful”.
I applaud the One Dementia Voice partnership in raising awareness of this vital matter with its five key points, which the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) outlined and which I support. I am encouraged that the Government have been taking this issue seriously. That has been touched on, and I am sure the Minister will comment further on it. There have been a number of initiatives and policies, such as the “Challenge on Dementia 2020” strategy, under which the Government’s commitment to spend over £300 million on dementia research between 2015 and 2020 was met a year early, with £341 million being spent by March 2019.
As others have mentioned, this debate is also about supporting the 5.4 million unpaid carers, for whom I know, from our own experience of caring for my mother-in-law Alina for three years at home, it is at times very challenging. When we set up our charity, Concertina music for the elderly, some 25 years ago there was much less understanding of Alzheimer’s and dementia. I am pleased that there is now much greater public awareness of dementia, which is vital in ensuring that people are supported to live well with the condition. I am very encouraged that there are over 3 million dementia friends.
I would like to return to the fifth point made by the One Dementia Voice partnership, which is how we will rehabilitate people after the crisis. I would like to add music to the mention of speech and language therapy. I have seen for myself at concerts we have organised how people who had not communicated for a long period of time suddenly came to life as they heard the songs and tunes of their youth, bringing back many happy memories from the past. Music in Hospitals & Care reported back to us a while ago after a concert:
“One of our patients has recently been bereaved and critically ill herself and at times lost the will to live. At the end of a concert she whispered to me, ‘I wouldn’t have missed this for the world.’”
I thank my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) for the way she set out so many of the complexities in this debate. We know that the intersection between dementia and covid is complex and that there are multifaceted challenges. I am sure we will not touch on them all in today’s debate.
I thank the Alzheimer’s Society, which is supporting people with dementia day and night through this crisis. I echo its call, and that of the Association of Medical Research Charities, for a significant and separate fund to be set up—a life sciences-charity partnership fund—to continue medical research through this time. We know that those charities’ funding has been massively hit and that they need support. I trust that the Minister will feed that back to the Chancellor ahead of the autumn statement that we are expecting.
We know that 27% of the people who have died had dementia. There is a correlation with older people, because of the resilience they have, but the figure is also disproportionate within that age population. Research is therefore absolutely necessary in order to understand what is happening. From my own clinical background, I have considered the impacts that dementia has on people with respiratory conditions, and there are certainly issues that need to be looked at in greater detail. I believe that that has mitigated against opportunity for people with dementia and created inequality. For instance, people with respiratory conditions often find it hard to comply with some of the treatment processes: positioning, secretion clearance from the lungs, and the ability to follow complex instructions such as huffing, coughing and taking deep breaths. When not under instruction, they are certainly not able to do that.
We have also seen environmental challenges to healthcare. At the beginning, we saw no PPE and barrier nursing, which have been well debated. As was said in this Chamber yesterday, 39% of people with dementia live in care homes, and 70% of care home residents have dementia. That environment, in itself, has become unsafe, but it has also become a place of isolation, which has a real impact.
There is a big question around the efficacy of access to healthcare. We know that there was a reduction in referrals to healthcare, which meant drugs not being administered, as well as no therapy, physio or secretion clearance, as I indicated. That could well have raised the number of people who had covid and who died from covid. We therefore need to look at the human rights of individuals with dementia.
When we consider the psychological, emotional and cognitive impacts of separation and isolation, which have been articulated so well in this debate, we know that harm has been caused. I therefore ask the Minister to look at the report of the all-party parliamentary group on ageing and older people, which looks at a commission on the human rights of older people, and to look at the work that has been done in Wales on having a commission and a commissioner to look at those issues. That is a way of ensuring that older people are part of the debate. That will include many people with dementia, although I appreciate that some people with dementia are younger.
That would be a way of putting protections in place, and of ensuring that we care for the carers. This is the point that I want to end on. We know that the majority of carers are saying that they are exhausted, they are anxious, they are having sleeping problems, they are depressed. They are not part of the conversation at the moment, and we need to bring them into it. Many are lonely and struggling at this time. We need to care for those carers as they not only take on more and more responsibilities, but provide vital care day in, day out.
It is a pleasure to serve under your chairmanship, Sir Graham.
The human consequences of this horrific pandemic have been the most painful to bear. As we have heard from all Members here today, we share a common bond forged in the fire of this pandemic. As Members of Parliament who serve our constituents, we are witness to stories of dread suffering caused by the circumstances created by our response to this virus. However, I have found that when constituents have written to me or met me to ask for help and support, and shared the circumstances that define their lives and the lives of their dementia-affected family members, it is then that one’s heart truly bleeds and one struggles to keep strong for them. When one finishes reading their letter or bids them farewell at the door, on considering their cases, one invariably finds one’s cheeks a little wet.
There is no gilding the lily. These have been, and continue to be, bruising, brutal days for all of us in the country. The impact that covid has brought upon dementia care patients and their immediate professional and familial carers is one of immeasurable emotional anguish. In my Wakefield constituency, 1,197 people have been diagnosed with dementia. The representations I have received from their carers and families through this pandemic have highlighted immense suffering above and beyond the explicit death count that the pandemic has brought.
I will raise two important points: the increased vulnerability of dementia patients during the pandemic and the irreplaceable nature of human contact. While we, as legislators, continue to interrogate and evaluate the data presented to us, we can say with certainty that age is a strong determinant in both the development of dementia and serious illness and fatality as a result of covid-19. Those with dementia are often susceptible to further underlying health conditions that affect their status of vulnerability. A joint study published by University College London and the London School of Economics in August found that people with dementia accounted for 25% of covid-related deaths in England and Wales, and for 31% in Scotland. As such, it is both rational and morally right to put dementia patients at the very front of the queue to receive the vaccine, to mitigate as far as possible the immense double distress caused by having dementia and a pervasive fear of catching coronavirus.
My second point is perhaps more poignant. We often speak of the pandemic’s disruptive capacity in bringing forward years of technological change in a matter of months. Dementia lays bare the irreplaceable nature of meaningful human-to-human contact in care provision. The very condition of dementia degrades people and, over time, deprives them of memories of their loved ones. In many cases, when only frail muscle memory remains, the only thing that provides a sense of recognisable comfort is the faint recognition of a family member or regular carer in an increasingly confusing and scary environment.
With the myriad rules and regulations that have been imposed upon us, that necessity becomes ever more critical. I am sure that many of us in this House have seen the distressing videos of a retired nurse being taken from her residential home by her daughter, a trained nurse. That was not only deeply distressing, but painful, and a sorrowful metaphor for the anguish that many care providers face when making decisions relating to their nearest and dearest.
As I said about breast cancer in the earlier debate in this Chamber, we must ensure that the cure is not worse than the disease. When imposing measures on the freedom of the individual, the state and its representatives must retain human kindness, compassion and decency at their very core.
It is a pleasure to serve under your chairmanship, Sir Graham. I am very pleased to have sponsored this debate alongside the hon. Member for Oldham East and Saddleworth (Debbie Abrahams). Everyone here has a purpose and something to say about this issue.
We know from the Northern Ireland Statistics and Research Agency that of the 475 deaths in March and April—just two months—in Northern Ireland, a third were attributed to dementia on the death certificate. The impact on those who have dementia is clearly greater than elsewhere. In addition to thousands of tragic deaths in care homes, the effects of social isolation are a big issue: 70% of care home residents have some form of dementia, and the prevention of visits to care homes is having a hugely detrimental impact on their lives.
Contact with family and friends is vital to the wellbeing of people with dementia. Some 82% of participants in an Alzheimer’s Society survey reported a deterioration in the symptoms of people with dementia. People with dementia deserve better. The contribution of loved ones to their care and wellbeing should be acknowledged by the Government and reflected in the guidance to care homes on safe visiting.
I will mention one family, whose story is very real. They wrote to me:
“Our mum sadly passed away in September. We were not with her when she died. We had not been inside her home for over six months. In all that time, we saw her through a window. She didn’t understand why we were stood outside and kept telling us to come in. We were unable to hold her hand and unable to kiss goodbye.”
I understand that advice given to the Government by the Scientific Advisory Group for Emergencies in September stated that the transmission risk from visitors was low. That SAGE advice, which says that people could visit homes and there was less chance of infection from visitors, must be implemented and released by the Government. Why not give the family and the person in the home a wee bit of compassion in their time of need? The Government do not allow for loved ones to provide the personal care that the residents so desperately need.
I urge the Minister to implement the Alzheimer’s Society’s recommendations for ensuring that care homes are safe and adequate for the needs of people with dementia. The Alzheimer’s Society study on this put forward recommendations. We should follow its knowledge and the science. There have been some innovations, for example the initiative led by HammondCare. During its pilot service, funded by Innovate UK, HammondCare recorded highly positive outcomes for people living with dementia and care teams, such as reducing certain behaviours and carer stress, building capacity in the sector and reducing the use of statutory services. Plans are being explored to offer a subscription service across the UK to support care teams. The Minister may wish to explore that. The innovation in that pilot scheme has shown a way of doing this.
I ask the Minister to outline the scope of the key worker pilot in England. How will it be rolled out, and when and how will it be evaluated? Given the updated implementation of the care partner model that we have in Northern Ireland—it is always good to learn from each other—will the Minister ensure that the emotional and physical care needs of people with dementia living in care homes will be met, and confirm that it will not be another eight months before people with dementia and their loved ones are reunited?
Dementia is a subject close to my heart. I hope the Minister will listen to the experts and the families, and do all she can better to connect people affected by dementia.
I echo the congratulations and thanks to the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) for her comprehensive and wide-ranging exposition of the effect of covid-19 on the those affected by dementia.
Yesterday, I participated in a debate—alongside several others here this afternoon—on family visit access in health and social care settings during the covid-19 outbreak. The two debates, though different, have significant overlap. I will try not to repeat myself. These matters are devolved to the Scottish Parliament, but as we face common challenges, it is appropriate for Members representing Scottish constituencies to take an interest and contribute to this important debate.
There are real concerns about how covid-19 has affected our constituents living with dementia. As we have heard, that effect has been deeply distressing and the consequences have been far-reaching and profound. I want to say more than I did yesterday about my own personal experience and insight into this. My mother-in-law, Iris, is in a care home in Saltcoats in my constituency. She has dementia and lockdown has caused a dramatic decline in her condition. I am no medical expert, but I do not believe her decline can be halted now. It is so bad that I do not think it will be reversed. I appreciate that might not apply in every case.
Even without the health pandemic, dementia is extremely distressing. Those who live with it lose a lifetime of memories and their sense of who they are vanishes. Just a few short years ago, my mother-in-law, Iris, was a long-serving Glasgow city councillor. She was a marathon runner and had run marathons all over the world. She thought nothing of travelling to the other side of the world simply for the joy of sight-seeing on her own. She was independent. She raised a family. She was always on the go, driven by a desire to improve her community. She was respected by all who knew her. Now Iris lives in a care home. She is unable to look after herself. She is confused. She is unable to recognise those dearest and nearest to her. She is a shell of her former self.
However, the speed of Iris’s decline since lockdown has been stark. Before lockdown, despite the dementia, she could have a chat and follow a simple conversation. Now she is barely able to speak. The isolation of covid-19 and the lack of stimulation has taken away her desire to live and she barely eats at all. I mention that because what has happened to Iris in the course of the covid-19 restrictions is not unique.
The lack of social contact with family, loved ones and even other care home residents, and the lack of stimulation that the restrictions have brought, have caused real distress for older people. They are locked in a world that is silent, solitary, confusing and bleak. It is a world that they do not understand, as the hon. Member for Birkenhead (Mick Whitley) has reminded us elsewhere—a world from which they and their loved ones fear they will never return.
We all want a return to normality. For people with elderly relatives, the fear is that their time left on Earth is so short that a wait for normality is distressing and frustrating. Some older people might not survive until normality returns, so they might never enjoy close contact again with their family. However, there are no easy or risk-free solutions to this problem—I said that in the debate yesterday. There is a very difficult balance between keeping our older people safe from covid and losing to them despair, and it is not easy to strike. I do not envy the Minister or anybody who is in charge of making those decisions.
It is important to remember that the average age of a person who dies with covid is 83. Many of the people who work in care homes will say that the older people dreadfully miss social interaction with other residents and their family, and it also takes a toll on those who work in care settings. Although we know that many people are keen to have contact with their elderly relatives who are suffering from dementia, people will also say—on the other side of the coin—that they are desperately keen to ensure that their elderly relatives are kept as safe as possible until we have a vaccine or the virus subsides with time. Whatever restrictions around care homes are lifted—I know that a number of hon. Members have called for that—they cannot be lifted without some risk to the elderly people who live in those care homes.
Let us not forget that older people living with dementia who are not in care homes need to be part of the conversation. Some older people with dementia are being cared for by close family relatives in their own home setting. As we have heard, carers will have faced their own difficulties since covid-19 restrictions were introduced. They, too, will be cut off and left on their own to manage as best they can with their caring responsibilities. Respite will be difficult to find, and shielding and covid-19 precautions shrink their world as they cope with a state of limbo in a world that has become much smaller for them.
The Scottish Government have been in regular touch with care representatives to ensure that their concerns are fully understood, and supporting unpaid carers has always been a priority for the Scottish Government—much more so now, in these difficult circumstances. The Scottish Government have established rights for all carers to have support and advice under the Carers (Scotland) Act 2016. The local implementation of those rights is backed by additional investment, which now stands at £39.5 million per year. That is so important, given the additional pressure that carers face due to covid-19. The carer’s allowance supplement increases carer’s allowance in Scotland by 13%, and it was one of the Scottish Government’s first priorities with its reserved social security powers, with an additional covid payment of £230.10 in June. That means eligible carers in Scotland will receive up to £690.30 more than those in the rest of the UK this year, with an additional £500,000 for carer organisations.
With all the uncertainty for our older people and their loved ones during covid-19, there is great distress. If someone is in their advanced years, they fear that they will never get to the other side of the pandemic and resume normality, which is what everyone wants. We have some prospect of a vaccine before too much longer. We are all keeping our fingers crossed for that, but we need to continue to look for creative ways to help combat the despair that we know so many older people with dementia feel and are confused about.
I said yesterday, and it is worth repeating, that for the large part we are talking about a generation whose youth was blighted by war and its aftermath, and now, in their twilight years, they are being blighted by this cruel virus in their old age. We need to protect and look after them. For many, the cost of doing that is the despair we have heard about today. The balance is very difficult to strike and there are no easy answers. I know the Minister feels the impossible weight of the task of trying to get the balance right. I hope she will be able to set out today what specific additional support may be available to those living with dementia, and those who care for those living with dementia, as this virus continues to blight their lives.
It is a pleasure to serve under your chairmanship, Sir Graham. I am so pleased that my hon. Friend the Member for Oldham East and Saddleworth (Debbie Abrahams) has secured this important debate. I thank all hon. Members who have spoken so powerfully on behalf of their constituents.
The pandemic has taken an unimaginable toll on people living with dementia, the staff who care for them and the families who love and do so much to support them. There have been a staggering 23,000 excess deaths in care homes in England during the pandemic so far, more than 15,000 due to covid-19. When we consider that, as others have said, 70% of all care home residents have dementia, the sheer scale of the impact of this awful virus is brutally clear.
We must remember that people with dementia do not just live in care homes and nursing homes. Some 60% are cared for in the community and their own homes, and they have too often been overlooked.
We need to learn the lessons from what has happened so far. We desperately need long-term reforms that transform all care services, whether that is care homes or care in people’s own homes, so that we have a system truly fit for the future. The virus has brutally exposed the fundamental flaws in our care system that many of us have been talking about for a long while. The most obvious is that, for too long, frontline care workers, who are so essential in caring for people with dementia, have not been properly valued or supported and they have not been properly paid.
We can see that in the way that at the start of the pandemic, many frontline care workers just did not get the personal protective equipment they needed. I heard many stories of care homes saying that their masks and other equipment had been requisitioned by the NHS. I want NHS staff to have proper PPE, but that shows that, on the ground, social care is still not seen as equally important. We also saw that in testing. It took a very long while to get the regular testing that care home workers need. Domiciliary care workers are still not getting weekly tests. That is a real issue, as we see how much this virus is spreading in the community.
The third issue is—let us be honest—around the pay, terms and conditions of frontline care staff. They do some of the most important work in this society, which is looking after the people that we love most, but many of them barely even make the minimum wage, because they are not paid for travel times. The key thing that stands out for me is that the Office for National Statistics has clearly found that care homes that pay full pay when people are off sick, that are not so reliant on agency staff and that do not have such high turnover rates because of low pay, have lower infection rates. We really need to learn the lesson from that for the future.
I hope that the Minister will set out what she plans to do about these issues. Where are we now at with tests for domiciliary care staff? We have heard that NHS and care workers will be a priority for vaccines. Can she tell us whether that will include domiciliary care workers as well?
All hon. Members have spoken about the importance of families in caring for people with dementia. We cannot deliver good quality care for people with dementia without not just the involvement of families, but their active participation and support. That is not just because we all want our families to be there for us when we get sick and frail; it is because when someone has Alzheimer’s or dementia, their family is their memory. They are the ones who really know that person—the music they like, the songs they used to sing, the books they read, the films they love. No matter how hard paid care staff work, which they do, they just cannot know the person to the same degree, but the families get precious little help and support and they are too often ignored in the debate.
We know that, even before the virus struck, there were 9 million unpaid family carers in the UK. Since the virus began, 4.5 million more people have taken on caring responsibilities, which is three times the size of the NHS workforce. Many carers were already being pushed absolutely to breaking point before covid-19. One of the worst statistics that I have ever seen from Carers UK is that about half of unpaid family carers had not had a break from caring for five years, and yet those very people are on average taking on an extra 10 hours of caring a week, which is having a really bad impact on their physical and mental health.
So, I hope the Minister will set out what action the Government will take to help family carers. Will there be more funding for them to have breaks? How can we get day-care services back? And how will we actually identify all these new unpaid family carers, because, quite frankly, most people who are carers do not think that they are carers; they are just a son, daughter, husband or wife who looks after the person they love. But they desperately need information, advice and support.
Also, as practically every single hon. Member has said, we need to do more to help families who have loved ones in care homes. We had a big debate about this in Westminster Hall yesterday. I will repeat myself a little bit, because it is such a massively important issue. Indeed, in my 10 years as an MP, I have never been contacted by people who are not in politics about any issue as much as I have been about this one. It really is so important, because for eight months people have not been able to see their mums, dads, husbands or wives. What they do know is that those loved ones are fading fast, which causes enormous anguish, because if someone feels that they are letting down their mum, dad, husband or their wife, it will scar them for life. I know that that is what I would feel if I could not see my mum or dad.
I understand why Ministers are really worried about the risk that covid-19 will come back into care homes after the catastrophic loss of life we saw during the first wave of the virus, but we need to understand the situation. The Government’s own independent scientific advisers—the Scientific Advisory Group for Emergencies, or SAGE—said in a report published on 21 September that the risk of family members transmitting the virus in care homes is low. And 60 organisations, including the Social Care Institute for Excellence, the British Geriatrics Society, the National Care Forum, Alzheimer’s Society and Age UK, all agree, saying that there is no evidenceAll those groups support calls, as does Labour—and indeed many hon. Members who have spoken today—for at least a single family member to be designated as a key worker, so that they can get the testing they need and we can safely start visits again. We first called for this in mid-June and again in September. I hope that the Government really take action. Their latest guidelines—about floor-to-ceiling screens, or having visits outside— are not good enough. Also, they will not work; a screen does not work for someone with dementia. In case anybody had not realised, it is also now dark, cold and wet outside, so outside visits will not work.
Yesterday, the Minister for Care said that a pilot will start on Monday in four local authority areas, with 30 care homes, to test family members. I had a lot of calls about that overnight. Where are these local authority areas? How long will the pilot last? The bottom line is that I do not think a pilot is good enough. The average length of stay of someone in a care home before they die is two years. We have had eight months of lockdown. This is the last Christmas for some people. We must get everybody—all families—getting those regular tests, so that visits can start again.
In conclusion, I have argued for almost two decades now for the desperate need for long-term reforms to social care. In July 2019, in his first speech on the steps of Downing Street, the Prime Minister said:
“I am announcing now that we will fix the crisis in social care once and for all, with a clear plan we have prepared”—
I emphasise those words, “we have prepared”—
“to give every older person the dignity and security they deserve.”
Yet more than 15 months later, that “plan” is nowhere to be seen; in fact, we seem to be going backwards.
The Health Minister in the House of Lords, Lord Bethell, said on 28 October:
“I have to be realistic. We are in the midst of a Covid winter, when there are enormous challenges in keeping the show on the road…It just would not be right to launch an important and industry-changing reform process when the focus of everyone in social care is the protection of the vulnerable and our loved ones.”—[Official Report, House of Lords, 28 October 2020; Vol. 807, c. 226.]
The opposite is true; this is precisely the time when we need those reforms to give people, families and care workers hope that there will be a better system, and that when we have come through this awful pandemic we will not go back to the same stretched, miserable, awful system that too many people have had to cope with. Families, care workers and the system as a whole are at breaking point. In the 21st century, in one of the richest countries in the world, that is not good enough. It is the challenge of our generation to sort this problem, and I hope that when the Minister responds, she will set out how we will do so.
I thank the hon. Members for Oldham East and Saddleworth (Debbie Abrahams) and for Strangford (Jim Shannon) for securing this important debate. I commend the many personal and powerful contributions from hon. Members, but I pay particular tribute to the work of the hon. Member for Oldham East and Saddleworth, who is the co-chair of the all-party group on dementia, and to the charities that she and I both work with, such as the Alzheimer’s Society.
It has not been easy to listen to hon. Members’ stories today. They are painful to hear, let alone for those who have lived them. Hon. Members have brought great knowledge to the debate, from the clinical challenges of diagnosing covid in those with dementia to the understanding of what makes a difference for those living with dementia, from physical contact to music. Hon. Members have brought to the debate a real understanding of the burden borne by informal carers across our constituencies. If anyone needed reminding about how lives are being blighted by the cruel combination of covid and dementia, they have been reminded. Even before the pandemic, people with dementia were some of the most vulnerable in our society; they were usually older and living with other health conditions alongside this terrible progressive disease, for which we still have no cure. Dementia was already the No. 1 cause of death in this country and, tragically, more than 12,000 people with dementia have lost their lives to covid—people who still had life left to live.
Many of my conversations over the past few months have been about how much worse the pandemic has made life for people with dementia, their families and their carers. For instance, restrictions that are hard for us can make life almost impossible for them. People with dementia can find it really hard to follow instructions or the rules and guidance on social distancing and hand washing. Being made to stay at home means that they may lose the independence that they used to have, and which they might never get back. For those living in care homes, there is confusion about why their families no longer come to see them. Although the care staff are often wonderful, how can they know someone’s needs as well as their partner, son or daughter, who perhaps used to visit several times a week or even every day?
Equally heartbreaking has been the experience of families who have been unable to see the person they love for many weeks, knowing that that person might be confused and lonely, and then, tragically, finding out that their health has declined. For carers, it has been extra tough without the usual support and respite care. I thank families and carers for their incredible resilience and for what they have done, day in and day out, for the people who so need their love and care. There are more than 5.4 million informal carers in England, from children to older people who themselves might be in need of support. That is why, as we bear down on coronavirus, the Government are doing all they can to support those who are living with the consequences of this cruel disease. I will briefly set out some of those things now. As I do so, I will pick up on the questions that hon. Members have asked during the debate.
First, I will outline the overall support that we are providing, as set out in the adult social care winter plan, which specifically drew on the expertise of those who are involved in dementia care. It sets out the Government’s commitments and our expectations of local authorities, the NHS and care providers. It includes our commitments to PPE for social care, to testing and to an investment of more than £546 million, bringing our funding for infection control in social care to £1.1 billion.
The hon. Member for Oldham East and Saddleworth asked me about parity of PPE and testing between social care and the NHS. We are now providing PPE for social care to meet all its covid PPE needs. Like the NHS, social care is getting the PPE that it needs for covid. In addition, we are providing regular testing—weekly for care home staff and every 28 days for residents—and social care has been at the front of the queue. We have also learned from and adjusted some of the restrictions from the first lockdown to take account of the difficulties for those with dementia and their carers. The hon. Member for Bradford South (Judith Cummins) asked, on behalf of her constituent Tracy, if an adult caring for another adult can form a support bubble with another household. As she probably knows, an adult can form a support bubble with another household as long as that household is a single person. The restrictions allow somebody entry into the house of a person who requires care to give care, and to give the carer respite. I will take away the question of a larger bubble—I have been asked about it by other colleagues, and she and I have spoken about it—and whether I can do anything further to help on that.
The hon. Member for Leicester West (Liz Kendall) spoke about day services. I know how important they are, particularly for people with dementia and those who care for them. That is why I worked with the Social Care Institute for Excellence to provide guidance to services on how they can operate in a covid-secure way. I have said that the infection control fund can be used to help with extra costs for day services, and I have urged them to reopen in a covid-secure way. I have also been working with the Local Government Association and the Association of Directors of Adult Social Services to find out about the provision of day services—how much provision is there, where are the gaps and what more can be done to increase it?
Many hon. Members spoke about visiting in care homes. I want people to be able safely to visit their loved ones in care homes, but this is hard. Covid has taken the lives of 15,400 people living in care homes, and we know that when covid gets into a care home, particularly one that is looking after people with dementia, it is hard to control. Anyone can bring it in, particularly since many people have covid without any symptoms, so they do not know they have it. That is why we have advised care homes to restrict visiting, particularly during this national lockdown when covid rates are high in much of the country; in some areas, as many as one in four people have covid.
I did not want care homes to be closed up again during this lockdown, as they were in the first time around. We are advising care homes to do things that many have already put in place, such as allowing visits through screens and windows, but I know that that is not the answer, particularly for those with advanced dementia. That is why we are launching our trial of visitor testing on 16 November in 30 care homes. We are trialling both PCR and lateral flow tests to find the best way of doing this, with the intention of rolling out testing for visitors across the country as fast we can in December. I want people to be able to touch, hold hands and hug again. I cannot say when that will be possible, but, believe me, I want to make it possible again.
I turn briefly to access to diagnosis. At the start of the pandemic, many memory assessment services were closed and dementia diagnosis rates fell below our national ambition for the first time in four years. While we have supported remote or virtual memory assessment services, I recognise their shortcomings. I want to see in-person services fully functional as soon as possible, because a diagnosis can make such a difference so that people can access the treatment and support they need. I know the hon. Member for Leicester West, who raised this point, will understand.
I want briefly to mention the important role of charities such as the Alzheimer’s Society and the Race Equality Foundation, which are doing particular work to support black, Asian and minority ethnic people with dementia. We have supported those charities with extra funding, but I know they have gone above and beyond in their work during this pandemic.
I conclude by saying that as we navigate these challenging times, we must never lose sight of what is important. Our efforts must not just be to save lives, but also to make life worth living for everyone—thinking hardest and trying hardest for those who live with the greatest of challenges. That means doing our utmost for those with dementia and their families.
I start with heartfelt thanks to everybody who has contributed to the debate. It is so nice to be in such a high-quality debate where we all work together, and where we see and agree on the issues. Now, it is about moving forward on the solutions. There was much consensus, particularly on how we make sure that families can visit their loved ones in care homes. I have huge regard for the Minister. She has real empathy, and I am grateful to her for turning it into action, but I ask her to make a commitment. If the trial is starting next week, will she come to the House and make a statement at the end of this month, so that we know the results of that trial and when in December it will be rolled out? My hon. Friend the Member for Leicester West (Liz Kendall) makes an excellent point that this may be some people’s last Christmas. For everybody concerned, please can we do our utmost to make sure that this happens?
Motion lapsed, and sitting adjourned without Question put (Standing Order No. 10(14)).