I am sure all colleagues will have noticed that we have a relatively short amount of time for two debates this afternoon. This one will run for approximately one hour and 20 minutes, to divide the time equally, and there is a three-minute limit on Back-Bench contributions. I am sorry about that, but time is very pressured.
I beg to move,
That this House
has considered long covid.
I would like to start by thanking the Backbench Business Committee for giving us time to debate long covid today. I also thank members of the all-party parliamentary group on coronavirus, especially Dr Poulter and my hon. Friend Andrew Gwynne, who co-sponsored the debate. Most of all, I want to thank everyone who has written to me, the all-party group or their own MP in the last few weeks with their stories. Their accounts are deeply moving. Today’s debate is for them.
In one such email, a constituent of mine said,
“I can’t see myself getting better and being able to beat this fatigue.”
Her experience is sadly not unique. Other symptoms of long covid include, but are not limited to, poor memory, brain fog, headaches, lung pain, palpitations, muscle pains, purple toes, hallucinations, hair loss and insomnia. These symptoms often start weeks or even months after the initial bout of covid, and many report them getting worse, not better, with time.
Long covid affects young as well as old, and the numbers are staggering. It is believed that there are 300,000 people living with long covid already in the UK and 7 million worldwide. New research in The Lancet suggests that more than half of people who are hospitalised experience ongoing symptoms six months later, and the Office for National Statistics estimates that one in 10 people who contract covid at all will still have symptoms three months later. So far this year, we have consistently seen more than 40,000 new coronavirus cases a day, which means that there are potentially more than 4,000 new long covid cases a day—I repeat: 4,000 more cases a day.
Despite those numbers, public awareness of long covid is poor. Many who are young and fit think that they have nothing to worry about and that the restrictions are more about protecting others than themselves. One expert told our group this week that anyone who flouts rules by thinking it will not affect them is also playing Russian roulette with their health. We are concerned that the Government’s focus on NHS beds as the primary metric by which danger is measured means that the public believe that if they do not end up in hospital, it counts as a mild case of coronavirus The problem is that a mild case of coronavirus can lead to long covid—and there is nothing mild about long covid.
Take Jason, for example. He is 23 years old and a personal trainer, so his is not the profile of someone we often see blighted by coronavirus in the news. He told me:
“for the last nine months I haven’t been able to leave my house due to long effects of covid. I haven’t cooked all my meals for one whole day once since the end of February, everything small is a major task. I can’t walk more than 100 metres without suffering.”
The evidence of children getting long covid is building. New groups such as Long Covid Kids have been highlighting how children can present very differently from adults. That needs robust research fast, as there are surely implications for how we view school safety.
The consequences of this emerging reality should give us in this place pause for thought. Some are arguing for a rapid unlocking when the first wave of vaccination is complete, and yet the effect that such a move would have on the numbers contracting long covid seems to be missing from the debate. Long covid is scary and often heartbreaking, and it is avoidable if we prioritise keeping numbers low.
Today, the all-party group is calling for three things: better reporting, urgent money for research, and recognition by employers and the welfare system. On reporting, we need a national register to count and publish the number of people living with long covid in the UK. Positive cases, hospital admissions and deaths due to covid-19 are published regularly. We need to add long covid to that list. Doing that would help to drive up compliance, especially among younger adults. It would also help to explain policy decisions about future rules and restrictions, especially once the most vulnerable have been vaccinated.
Many long covid sufferers have no formal diagnosis, as they never had a test because tests were not available in the first wave. It is also worth noting that long covid can emerge months after a bout of the initial virus and long after the antibodies remain, so even an antibody test may not tell the whole story. The register therefore needs to be symptom-based, not test-based. We also need active follow-up of people who test positive for coronavirus, to identify long covid cases better and offer support.
The Government need to improve urgently the scope and funding of research both into the disease itself, including its prevalence among different sexes, races and groups and diagnosis, and of course into effective therapies. Clinicians have called for the approach to be truly multidisciplinary. It should cover mental as well as physical health. There are currently 69 NHS England long covid centres, which is a good start; however, it is a postcode lottery. We have heard, for example, that there are none in Wales. Some have reported being turned away when they go, or even told that they are not treatable. Long covid’s impact on mental health needs further research and support too. That includes children. Although we welcome the National Institute for Health and Care Excellence guidelines, we also need to remember that there is a lot that we still do not know, and the guidelines need to evolve rapidly to reflect the most recent research.
Long covid sufferers feel they are forgotten in this pandemic, and their plight needs recognition by both the state and employers. Take Liz. She told me:
“I lost my job as a result of my illness, I have struggled on universal credit. This does not cover my bills. I’m getting further and further into debt and can’t see a way out.”
Take Alexander, a headteacher, who said:
“after 23 years of service as a teacher and headteacher, I now have a written warning on my employment record due to me becoming ill during a global pandemic. I have a second review meeting in just over a week’s time and having not made sufficient recovery to return to work, I will most probably receive a final written warning.”
Take Daisy, an NHS nurse in Wales. For four months she received reduced and then no pay from NHS Cymru, which told her that it was unable to support staff who contracted covid-19. Her case was resolved, but she continues to say that this issue has not been resolved at a national level in Wales. That story, and many others like it, have left me speechless—a headteacher and a nurse, key workers on the frontline, who have no choice but to do their job with inadequate personal protective equipment and testing, and now face financial ruin for doing their duty. It is unacceptable, which is why the APPG recommends that the UK Government recognise long covid as an occupational disease and institute a long covid compensation scheme for frontline workers.
That scheme should go beyond existing sick pay schemes and should be specific to those living with long covid who are unable to work. During the first wave, I led a cross-party group of MPs in calling on the Prime Minister to set up a coronavirus compensation scheme for the families of frontline workers who tragically died in the line of duty. The Government listened and now there is a scheme in place, albeit just for NHS and social care staff. We need an extension of such a scheme so that it mirrors the armed forces compensation scheme, and recognises that casualties are not counted just by the tragedy of death.
What of everyone else? Guidelines from the Government for employers are crucial, so that the public and private sectors know how they should be supporting people with long covid. I first wrote to the Prime Minister recommending employer guidelines in August. Four months later, we have not seen any progress. Last but not least, when all else fails we need to ensure that our welfare system is not unfairly excluding people with long covid. Statutory sick pay, personal independence payment and universal credit all need to be geared up to support them and, indeed, their families, who suddenly find themselves as their carers.
There are so many unanswered questions and concerns, and, as you pointed out, Madam Deputy Speaker, there is not enough time. Our understanding of covid, and long covid in particular, is evolving day by day, and I have no doubt that this will not be the last debate we have on this matter.
Reporting, research and recognition are all desperately needed, but more than anything else we need to protect our heroes on the frontline who cannot work because they have long covid. I urge the Government to commit to recognising long covid as an occupational disease and to create a scheme to help those people; that is my most urgent and immediate ask of the Minister in today’s debate.
I end by thanking all Members for speaking today, and, above all, by thanking everyone who has shared their story. I want them to know that they have not been forgotten and that this House has heard them and it is listening. Our hope now is that the Government will step up and act, too.
I draw the House’s attention to my declaration in the Register of Members’ Financial Interests as a practising NHS doctor who has been working on the frontline throughout the covid pandemic.
There is no doubt that long covid has a life-changing impact on the lives of some of the people whom it affects. We often do not hear much about young people when we discuss the impact of covid on our hospitals and when we talk about death rates, because, predominantly, the illness seems to have immediate adverse physical outcomes for older people. Very often, though, it is young people who are the victims of the life-changing impacts of long covid. As Layla Moran outlined, it is a subject that we are learning more about literally by the day, and we still need to better evaluate the data and the statistics on long covid. Undoubtedly, we are seeing a group of individuals who are experiencing the effects of covid often many weeks or months after their initial infection, and it is those individuals who need help.
Although we welcome the fact that the NHS has set up a new care pathway and new long covid treatment centres, there are some specific asks that I have of the Minister. First, we need that national register and better data. The covid app that has been set up by King’s College London and Professor Tim Spector is an excellent start at getting some national-level data on people who have covid symptoms, people who have positive antibodies for covid, and, indeed, the effectiveness of the vaccine. The key point is that we need that data to better understand the impacts of long covid and to treat people more effectively.
My second key ask, in the time that I have available to me, is to look at the mental health impact of long covid on people. We have a cohort of people who have been traumatised with post-traumatic stress disorder symptoms while being treated for covid in intensive care. For many of them, it will take weeks and months to recover. That group need special attention in particular. I look forward to hearing from the Minister for Patient Safety, Suicide Prevention and Mental Health, my hon. Friend Ms Dorries, who is replying to the debate, and welcome other contributions today.
These are very worrying times indeed. I am worried as a Member of Parliament and people out there are extremely frightened about what is happening in this country at this moment in time. We saw a record 1,564 recorded deaths only yesterday. People are worried about what is happening and about what the challenges ahead might present. That includes the challenge of long covid, which, as we begin to learn more about it, appears to pose what can only be described as a serious threat—perhaps more so than we once believed—and it is a threat of which many people are still unaware.
The impact of long covid can be absolutely devastating. In the most serious instances, it can be totally debilitating. People can suffer extended periods of symptoms including: fatigue; breathlessness; anxiety; depression; palpitations; chest pains; joint or muscle pain; not being able to think straight or focus, which has been described as brain fog; and many others that have already been described.
A number of my constituents have been in touch about experiences they have had with long covid. In one example, a 29 year-old man has been feeling the effects since way back in February. After numerous visits to the doctors and several false diagnoses, he was finally told he had long covid. Another example is a 26-year-old woman who as a result of long covid ended up having emergency bladder surgery and consequently developed a neurological disorder that has left her unable to mobilise without the use of a wheelchair since November. Both were young, otherwise healthy and worked in the care sector. As a result of having long covid, they have been unable to earn a proper income and show no signs of making a speedy recovery.
There is a failure of the social security system to recognise people suffering from long covid. There should be financial support for those who are unable to work, including a review of the paltry and mean statutory sick pay and of universal credit and the temporary £20 increase. We need to look after the people who have this debilitating disease. I fear that since the Government have failed to tackle successfully any other facet of this pandemic with any degree of competence, they will manage to fail in this as well.
I conclude by pleading for the Government to learn from their mistakes going forward in order to save lives and get the country back to some form of normality.
I congratulate Layla Moran on securing this afternoon’s debate. For the past three years, I have been involved with individuals living with myalgic encephalomyelitis, a post-viral condition triggered by a virus such as flu or, in some cases, severe acute respiratory syndrome. Knowledge of post-viral conditions, particularly with regards to activity management, is essential for the many people now living with long covid. As early as January last year, some people expressed concerns that this mysterious new coronavirus could produce similar post-viral effects. However, the sheer numbers affected by long covid is a serious health challenge.
In addition to listening to and—crucially—believing and supporting people with long covid, health professionals should be providing guidance on symptom management. I am pleased to see that the National Institute for Health and Care Excellence moved quickly to provide guidelines for long covid, and thankfully it has cautioned against the use of graded exercise therapy. It is surprising to find a guideline recommending exercise testing. Exercise testing in people who may have an undetected cardiac pathology clearly carries a risk. In addition, the NICE guideline contains no specific guidance on the management of any of the common symptoms of long covid. That is a serious omission that requires urgent attention.
Advice on symptom management cannot be left to charities and support groups. Instead, we should be looking at how that can be delivered in primary care, with the help of, for example, properly trained community physiotherapists. There is a need for health professionals, employers and wider society to recognise that recovery from a virus takes time. Employers must identify tasks that individuals can continue to carry out, and that might be in a different setting from what they are used to doing. The Government must ensure that there is proper financial support for those affected. It may be that these people take months or even years until they start seeing improvements in their health, and we must make sure that the support system can be just that during these times.
Today, we had a study by Public Health England that shows that those who have had covid will have immunity for about five months post-infection. Those who are living with post-viral conditions such as long covid or, indeed, ME, should therefore be considered vulnerable beyond the five months and prioritised for vaccine. Finally, it has taken decades of campaigning, largely due to the lack of belief—
Order. I am afraid I have to thank the hon. Lady for her speech. We need to move on, because not everybody will be able to get into this debate.
I wish to concentrate my remarks in this debate on two things, which will hopefully show that even though long covid is not as high in word search functions, the Government and the NHS have not ignored it. My first observation is that, in the context of covid-19 itself still being a relatively new disease, the existence of long covid has been known about for even less time. I must say how impressed I am by the response of the Government and the NHS, which have put in place the comprehensive five-point plan for long covid support and made an investment of £10 million in post-covid assessment services currently spanning 69 trusts—almost half of all NHS hospitals in the UK.
Secondly, I will provide some real-time feedback from Russells Hall Hospital in Dudley North, which is my local hospital. It is one of the appointed assessment centres, and has informed me today that it has assessed more than 500 patients to date. It is working closely with primary and community care colleagues, and has produced a stratified, multi-professional offering for patients about the four main aspects of long covid, based on clinical severity and need. It is ensuring that patients with ongoing respiratory symptoms have access to imaging and respiratory nurse and clinician support, and that patients with other organ dysfunction are seen by the appropriate specialists, as are patients with musculoskeletal problems. Long covid patients can also benefit from our excellent Action Heart service, which is providing state-of-the-art exercise rehabilitation and already offers an excellent service to Dudley people. Patients requiring mental health support have full access to the NHS’s Improving Access to Psychological Therapies scheme. Finally, there has been a series of workshops with local GPs and hospitals to better understand this condition and the support services required for ongoing care.
I am also advised that the clinical commissioning group is co-ordinating work in conjunction with all hospitals and CCGs across the Black Country to better understand the wider long-term impact of this condition. No doubt that will feed through NHS England so that we all have a better understanding of this terrible disease and its legacy.
As we all know, long covid is a very real issue that many of our constituents are dealing with; indeed, colleagues and former colleagues from this House are also suffering from the effects of post-viral symptoms. My friend and former colleague Jo Platt has been a great campaigner on this issue, but after 10 months of living with the disease, little progress seems to have been made. She told me that some of the online support groups have been a lifeline to her, and have helped her to find treatment, which in turn has eased some of the symptoms. However, this comes with an associated cost: Jo has told me that her supplements bill is around £90 a month. What happens to those people who cannot afford to purchase those supplements? Where is their support?
My constituent, Amy Seddon, has also contacted me about her journey. For months, she had no idea what was wrong with her, until she also found this online support and many of the pieces started to fall into place, as they would. Amy has been taking part in the COVERSCAN study, through which her own scans have shown liver changes and potential kidney issues that could have an effect on her life for many years to come. As an MP and an employer, I have two members of my staff battling with the symptoms of long covid. It is a reality for all of us.
One of the most difficult problems is that people are experiencing such diverse symptoms: some experience breathlessness, some joint pain, some anxiety, and some experience all of these together. However, we know that for all of the people who are affected by long covid, extreme fatigue is the biggest problem. GPs are not universally aware of the symptoms and are playing catch-up with long covid. I understand the huge pressures that have been put on the NHS and the Department of Health and Social Care, but there is some Government short-sightedness in dealing with this, and that is unacceptable.
It is not just a matter of further strain on our health service; the economic impact of people who may suffer from chronic conditions for years needs to be managed in a sustainable way. My hon. Friend Seema Malhotra, who is unable to join us today, has heard from many of her constituents who are suffering. Sam, a care worker, is unable to work because of the pain caused by this debilitating condition. People going back to work before they are ready and then having to take further sick days has an impact on their long-term prospects, and that is not fair to anyone. We need strong leadership from the UK Government and from the devolved Administrations to deal with long covid.
I commend Layla Moran for bringing this debate to the Floor of the House today. It is much needed, and I am pleased to be able contribute on behalf of my constituents. I pay tribute to the NHS and the Government for the work they are doing on long covid; I was delighted to receive the NHS briefing on the five-point plan on long covid this morning.
The debate is shining a light on a condition that is not fully recognised or fully appreciated. The focus of our national effort, understandably, has been on stemming the virus—particularly the new strain—but against the headlines about daily cases and deaths, NHS capacity and, of course, vaccinations, I fear that we are forgetting those who suffer from covid, survive it, but do not fully recover.
If the hon. Gentleman will forgive me, I would like to keep going.
As I was saying, we are in danger of forgetting those whose immediate threat to life from the more common symptoms has subsided, but who are left with one of the many debilitating conditions that relate and go on to form long covid. I would like to share with the House some shocking statistics that I have found in my research over the past day or so: 21% of those who get covid suffer with it for five weeks or more—112,000 people suffered with it for between five and 12 weeks. That statistic is from November last year, so there are bound to be more. One in ten of all those who get covid suffer from it for longer than 12 weeks.
Today, I want to speak in support of children with long covid and those who care for them. Sammie McFarland is a constituent of mine, and I pay tribute to her and her colleagues, who have set up Long Covid Kids, a support group for children and their parents who are contending with some of the most difficult of long covid situations. The inspiration for the movement came when Sammie and her daughter caught covid last March and both went on to struggle with long covid. Long Covid Kids has highlighted some profound realities, which we have talked about in this debate.
I will conclude my remarks with some clear and decisive asks of the Minister. Children must be counted in long covid cases, and I fear that so far they have not been. Paediatric provision is needed in the long covid clinics. We need to raise awareness of long covid in schools. We need a plan and consideration to be given to the return to school of long covid children, avoiding fines for parents but also appropriately phasing the return of children who are recovering.
I begin by thanking Layla Moran for her superb opening to the debate and for her leadership of the all-party group.
My experience with covid began in early March, when I started to feel grotty and run down. I just wanted to rest, but as a precaution I phoned NHS 111, which suggested to me that it could not possibly be covid because no cases had been reported in M34, even though I explained to them that I worked in hotspot SW1. Eventually, typical covid symptoms developed, so I spent the next fortnight in self-isolation. The illness lasted for about 12 days, by the end of which the country was in lockdown 1, but the reality is that, although the coronavirus passed, the effects are still with me today.
Thankfully, research is now being carried out and the Government recognise long covid as being real. That has been a battle. I was lucky: my GP is brilliant, and from an early stage recognised my condition—long before it had the name “long covid”. My condition is not as severe as it was even just a few months ago. There have been real improvements, but it has been a hard slog to get here. For the first seven months or so, the exhaustion came back frequently and to the point where just doing simple tasks around the House brought me out in massive sweats as if I had run the London marathon. I had lots of dizzy spells; I have never had vertigo before this. And oh, the brain fog! In a job where we have to be razor sharp, my short-term memory is shot to pieces. I have had to learn to pace myself. Trying to push my limits would set me back. I still have to remind myself not to overdo it.
The lasting symptom is still the brain fog. When it is bad, taking in information and processing it is so difficult. It is physically and mentally tiring, often triggering headaches, dizziness and vertigo. I am fortunate in having been able to balance work with my disabilities. Virtual participation and proxy votes have helped. I talk about the difficulties of doing my job, but what about the mechanic, the builder, the emergency worker, the teacher, the nurse—people who do not have the luxury of virtual participation, aides-mémoire, and an efficient and brilliant office to hide deficiencies? They are left to struggle and make the most of it, or to lose their jobs. On that point, the Department for Work and Pensions has to do more to recognise the condition for work capability assessments and other interviews.
I am so grateful to some of the representatives from long covid support groups for meeting me earlier this week. They want the Government to acknowledge that children can also get long covid. Of course children often present with symptoms different from adults’, so an awareness campaign is required, but children should also have access to treatment in long covid clinics and throughout the NHS.
The problem of long covid is not going away; it is growing as the number of people catching covid grows. I would like to hear from the Minister about a holistic approach, with research, treatment and support in the health sense, but also in the wellbeing sense, the workplace sense and the family sense too. Let us support people and their families—
I am pleased to pay tribute to Layla Moran for securing this debate on such an important topic.
I am a member of the Health and Social Care Committee, and over the past year we have heard lots of evidence from lots of areas of the NHS—from social care, patients and staff—about the challenges that they have stood up to in the face of covid and the issues that have been raised. Throughout the year, I have seen a constant change in the landscape and the battles that we are having to fight, and a constant process of relearning what we thought we knew about this terrible virus. Long covid is part of that ongoing story, as we continue to learn about it and to fight the challenges that it will bring.
The Government and the NHS must be thanked in many ways for the work that they have done to set up 60 specialist centres for long covid and for putting in place the five-point plan, but, of course, there is always more to do. The repercussions of coronavirus will be with us not only until we are all vaccinated, and not only until we all deal with this over the next few years and start to get back together again; they will be with us for years.
There are unknowns—things that we will not know until we face them in the future. Long covid is one of the challenges that we will face and learn more about as the months—and, sadly, the years—go on. Similarly, we are facing challenges around mental health, and in that respect we are learning more not just about ourselves, but about society and how we support each other. I pay tribute to the Minister for Patient Safety, Suicide Prevention and Mental Health, my hon. Friend Ms Dorries, for the incredible work that she and the Government are doing to tackle the challenges around mental health, and in this area.
I say to everybody out there: let us work together on this. We have to make sure that we are sharing the stories of the challenges, because we do not yet know whether some of the health challenges that we might be facing ourselves are due to long covid. It might be affecting our families, but they might not be sharing their stories.
Let us make sure that we learn from this excellent debate and all the wonderful words that have been spoken. My message to everybody out there, including Members, is this: “Please share the challenges you are facing. Speak to your GP and your family and share those stories, because you might be one of many silent people out there. Together, combined, your voice is so much greater than on its own, and you can save lives and change lives as we move into the future.”
I, too, congratulate Layla Moran on securing this very important debate.
It is understandable that in the middle of the covid pandemic, the focus has been on primary prevention and managing the symptoms of those who become infected, but given that, as has already been said, the covid tracker survey suggests that more than 4 million people—about 12% of the population—have symptoms beyond the acute phase, which typically lasts just four weeks, with one in 10 having symptoms beyond 12 weeks, we also need to develop healthcare management responses that recognise that covid can have effects way beyond that acute phase. On top of that, we need an appropriate societal response to long covid, where people are supported during their illness and do not feel stigmatised. That is incredibly important.
I am pleased at the speed with which NICE has brought forward its guidelines for managing long covid. I particularly like the recommended holistic healthcare approach when assessing patients with symptoms between four weeks and 12 weeks, and after 12 weeks, with the emphasis on empathy and acknowledging the impact that the symptoms may be having on the patient’s day-to-day life, including their ability to work. However, I was surprised that there was no reference to immunology or immune therapies. I hope that we have learned from the mistakes made in how we prevent, treat and care for people suffering with chronic fatigue syndrome, also known as ME, and post-viral syndrome.
We know that covid-19, like other viruses, attacks multiple systems—respiratory, cardiovascular, nervous and gastrointestinal—as it attacks epithelial cells, which are distributed throughout the body, but our body’s ability to fight the virus depends on our immune system reacting appropriately and not overreacting. The British Society for Immunology and a number of other researchers have suggested that, in addition to long-term damage to multiple organs, the pain, muscle weakness, fatigue and even brain fog often associated with long covid may be due to inflammatory issues associated with our immune system itself rather than covid.
There is still so much we do not know about the virus, and I support calls for more research, as well as for the establishment of a disease register. More research is needed, and I am a strong advocate of evidence-based medicine, but it is important that we never let the perfect be the enemy of the good.
Finally, we must ensure, as I mentioned, that we have a societal response, not just a healthcare response. Working-age people in particular must be supported by their employers and by the Government, through the DWP. We must ensure that adequate support is provided to those with long covid who are not able to work. Stigmatising those with long covid should not be tolerated.
The coronavirus pandemic has shed light on some of the inequalities that exist in our society. The evidence shows that those worst affected by the virus are generally those who had worse health outcomes before the pandemic, including people from less affluent communities such as Stoke-on-Trent Central.
Professor Altmann, the Government adviser and professor of immunology, was clear in his remarks to the all-party parliamentary group on coronavirus that although there is relatively little consensus in the clinical world regarding the causes and treatment of long covid, there is a shared understanding among medical professionals that long covid can affect anyone and everyone in society, including those who are young, fit and healthy. However, we know that the body’s ability to recover is better if a person’s general health is strong, so it is vital that we do everything we can to reduce health inequalities so that constituencies such as Stoke-on-Trent Central are not disproportionately affected by the consequences of coronavirus and the impacts of long covid.
Tackling obesity must be placed at the very top of our political agenda. We know that people who are obese are far more likely to become seriously ill and go into intensive care if they contract the virus. I believe that food labelling needs to be reformed so that we place the emphasis on promoting the eating of healthy foods, not simply junk food that is bad for people but meets food safety standards. The myriad statutory food labelling requirements from nine different agencies are bewildering and do not make it easy for the consumer.
We know the benefits of clean air and exercise for our physical and mental health. A recent report in The Lancet highlights a very real problem: reduced movement behaviours among children and young adults caused by covid-19 restrictions, if not adequately addressed, will have serious ramifications for long-term health outcomes. So I welcome the recent proposal in the Centre for Social Justice report to extend the school day for years 7 to 11 by two hours for sport and physical activities.
One of the many symptoms reported by people suffering from long covid is something similar to a brain fog. This causes a lack of mental clarity, an inability to focus and poor concentration levels, and it was very eloquently described by Andrew Gwynne. I know that the Government are absolutely committed to investing in mental health services, including, in my constituency, with a record £15 million to fund acute and community mental health services. Many people suffering from a brain fog find respite by taking in fresh air and doing light exercise in green spaces with good air quality. So I am particularly keen to see more access in my constituency to the River Trent and to support environmental health projects.
If there is one thing that we have learned from this pandemic, it must be that the health of our nation is a collective responsibility and impacts each and every one of us. From our economy to our environment and the health of our communities, it is absolutely integral that we look after each other and our communities for our nation’s long-term recovery and our ability to build back strongly.
Could I say that I am really pleased that this important debate is taking place today? We are all of course aware of the huge strain on the national health service caused by acute covid-19, but I strongly believe we must place an emphasis too on the treatment and support of long covid sufferers. Too often these patients feel forgotten.
On Tuesday, I participated in a briefing session organised by Layla Moran and the all-party parliamentary group on coronavirus. It was an excellent session, and we heard some really moving statements by people who are suffering from long covid, but I want to refer this afternoon to two local cases in my own constituency of Caerphilly.
The first case is of Mr Lee David Bowen from Trethomas. Lee is a first-rate opera singer—he is a tenor—but back in February last year he had a slight cough at first and was feeling a bit chesty. His doctor examined him, and said it was either a virus or reflux. A few days later in February, Lee felt extremely exhausted, could not focus and had no energy. His situation further deteriorated, and at the beginning of March he felt really hot and as if he had the flu. He went home and isolated, but the symptoms then got worse, with him becoming ill with a sore throat, a chesty cough, aches and endless fatigue. The situation since then has not got better. Only this morning, Lee contacted me to say that, 10 months later, he is still suffering from fatigue, and he has had a few days that were very bad indeed.
The second case I would like to refer to is of Maxine Simmonds. Maxine is a hospital radiographer at Velindre hospital in Cardiff. She told me, and I quote her exactly, just a few weeks ago:
“I have been Seriously ill with Covid-19 and had some help from my GP but urgently required help from the respiratory team for a CT scan to assess risk from blood clots and assess lung damage from both Covid and pneumonia. I have also been referred to cardiology but wait to even get a referral to essential neurology.”
She says her situation is getting worse, and she is no longer able to work.
I would like to say that these two cases are not isolated examples. I could refer, as other Members could also, to many other examples. I would hope that we will pay much more attention to long covid, and that we will allocate the resources to make sure that this situation is dealt with and dealt with quickly.
I thank Layla Moran for bringing about the debate, which will bring at least some comfort to some of those dealing with the effects of long covid in isolation, without access to some of the NHS support that we hope they will be able to access in the future.
We know so much more about the disease now than we did at the beginning of the pandemic, including that it is not only a respiratory disease but can be a multi-system disease, which makes it even more regrettable that some persist with the false narrative that covid only affects the vulnerable. Not only is that dehumanising and dismissive of older people and those with long-term conditions, but it is also false; statistics are coming through of many people who were previously young, fit and healthy who are now experiencing these lingering symptoms more than a month after the acute phase of their illness. Members have outlined many of those symptoms, and we are seeing research from other countries about the lingering impacts and about how these compare with previous severe acute respiratory syndrome epidemics.
Members have also laid out some of the necessary courses of action on guidance and ongoing research so that those experiencing long covid can have access to a pathway. Currently, certainly in Northern Ireland, in the absence of formal definitions, there is no recording, and therefore there will be no tracking of those affected. Extrapolating from the wider numbers of those who have contracted covid, we anticipate that around 9,000 people in Northern Ireland may be experiencing long covid. That is in the context of already horrendously long NHS waiting lists. For example, we already have 20,000 people waiting for a first neurology appointment. People seeking long-term care will be added to these lists.
The key point for Members is that an adequately funded and staffed NHS is key to caring for these individuals and others in the long term. Years of underfunding have been laid bare as the NHS struggles to cope with the peaks of the pandemic. We owe it to those who have contracted covid and those who are living with long covid and other long-term conditions, and crucially to NHS staff, to ensure that it is never again left in such a perilous state.
I congratulate and thank my hon. Friend Layla Moran for having applied for and secured the debate, and also for setting up the all-party parliamentary group on coronavirus, which is so important in giving this House a voice in the detailed response to the issues thrown up by the covid pandemic.
One point that I really want to get across in the short time available to me is that so little is yet known about long covid. We have an emerging picture, but those in Government have to demonstrate a bit of humility in their response, accepting that we do not yet know the full picture of how this will affect people. There must be more flexibility in how the system responds to people who are affected in this way. The point has been made to me by constituents that there is a lot of crossover between the symptoms and treatment of people with long covid and those who suffer from ME; I think that point was also made by Debbie Abrahams. Certainly, looking back over the years at the way in which the benefits system has coped with people who suffer from ME, let alone the medical profession, we can see that this will be a problem with which we shall have to come to terms for some considerable time.
I want to share with the House one email I received from a constituent, which illustrates very well the way in which, unfortunately, people are so often left to fall between the gaps. This constituent had two part-time jobs. She worked as a tourist guide and had another job on two days a week. She wrote:
“Because of the 50-50 rule I wasn’t eligible for SEISS, so, when I was made redundant…at the end of my Furlough, I sent my P45 in hoping for Job Seekers Allowance. I have just had a phone call to say that I am ineligible for JSA as my Class 2 contributions as a self-employed person don’t count and I wasn’t” making class 1 contributions for
I pointed out that I paid Class 1 contributions and tax for over 40 years. She apologised and said that only the last 2 years count! I’m ineligible for UC due to my husband’s pensions (he’s 77). That means I will have to take out my minimal work pensions (the total in one pot is about £65!) in order to survive until my State Pension kicks in in 13 months.”
I am afraid that that shows the way in which too many people have been left behind and excluded from the provision that the Government have made.
Things could have been so different if only the Government had been prepared to listen to those of us who said at the start that there was a role for a universal basic income in meeting the challenge to our society.
I thank my hon. Friend Andrew Gwynne and the hon. Members for Oxford West and Abingdon (Layla Moran) and for Central Suffolk and North Ipswich (Dr Poulter) for securing the debate and the Backbench Business Committee for scheduling it in the Chamber so that all MPs can take part.
The debate is important and timely as we pass the grim milestone of 100,000 covid-19 deaths and well over 3 million confirmed cases. We should remember each of those 100,000 deaths as the human tragedy it is as well as a sign of the failure to control the virus.
Together with colleagues who are taking part in the debate, I have heard evidence of the impact of long covid from witnesses to the all-party parliamentary group on coronavirus. The impact on their lives is profound, and their numbers are growing rapidly.
It is important to recognise that covid-19 is not binary, with people either dying or recovering fully. We still have little idea about how covid-19 affects those who survive it in the longer term. Even people who start with mild covid symptoms may end up suffering noticeable effects and developing new or worse symptoms for months.
Among the many issues that witnesses with long covid raised at the APPG, an important factor is where they contracted the disease. Our witnesses this week all worked in the NHS, and we heard that the doctors’ long covid group is expanding rapidly. It is right to ask whether the conditions on the frontline might mean that long covid is more prevalent among those who acquire it at work.
Given the devastating impact of long covid, we need to establish whether it is an occupationally acquired disease. If it is, it should be reported on, monitored and protected against, as any other workplace-acquired disease would be. Will the Minister therefore set out what the Government are doing to require employers, including the NHS, to monitor long covid among their staff, and what steps will be taken to support frontline staff with long covid?
As I said, covid is not a binary disease. It is simply not the case that people either die from it or recover fully. We must remember every covid death as the tragedy that it is, but we must also fully acknowledge and deal with the long-term impacts that the disease can have. People are living with the effects of the virus for months, and perhaps even years. They need our support. They need a health system that can identify long covid and research so that we can begin to treat it effectively. They need financial support if they cannot work.
We need a covid strategy that goes beyond preventing deaths. We need to drive cases down, even when the most vulnerable are vaccinated, so that we do not create a new generation of people living with long-term health conditions. We particularly need to establish covid-19 as an occupational disease and support the frontline staff with long covid who cannot work because of their symptoms. They must not be forgotten.
I thank Layla Moran for arranging this important debate, which I hope will raise awareness of the issue, and cause the Government to reassess the rate of sickness benefit and to invest in research.
Long covid can affect anyone who has caught the virus. It is another one of those invisible illnesses that people cannot see, and many still do not know it exists. Constituents, friends and family have reached out to tell me of their physical and mental struggles with long covid. Persistent breathing problems and coughing, fatigue, dizziness, chest pains and insomnia are some of the things that have been mentioned to me. Even getting a diagnosis has been challenging, with people having to go through all manner of scans and tests. The lack of explanations and solutions has led to support groups being created online, where people with long covid can connect with one another and share their difficulties. But not everyone has online access and not everyone is able to communicate their experiences. Low public awareness of long covid leaves sufferers feeling even more isolated. I would be grateful to hear from the Government how they will raise the profile of this illness.
The NHS is desperate to help these patients, but it needs help from the Government to do this. The Government need to ring-fence funding for research into the illnesses and find treatments. People with long covid also often find their ability to work seriously affected. The economy suffers from this section of the workforce being incapacitated. Sick pay is £95.85 per week. My constituent’s rent in a shared home is £900, with bills, each month they are short of more than £500, and their situation is not dissimilar to that of others, which means that the sickness pay rate is inadequate.
Another constituent asks me:
“How much longer is our society going to keep treating people with illness as a burden? How long are people going to face such hard decisions just to keep living?”.
Although I cannot give my constituent all the answers they need, I, along with colleagues today, call on the Government to recognise this illness, commit to reassessing the sick pay rate, and fund research treatments to cure and help sufferers with long covid.
Thank you, Madam Deputy Speaker. I commend Layla Moran for securing this important debate. Long covid is a prevalent and growing concern that is every bit as important as community transmission rates, excess mortality rates and the consequential impacts on other life-saving services, such as cancer services. It is evident in my Kirkcaldy and Cowdenbeath constituency. Bailey-Lee Robb, an 18-year-old student from Lochgelly, tested positive in October. He was isolated originally in his university accommodation, but he has now returned home to recuperate. He told me:
“Due to Long Covid I’m on painkillers as I have bad lower back and knee pain;
I still have a loss of smell;
shortness of breath;
short-term memory loss;
and some of my body randomly breaks out in rashes. While I try to lead a normal life, some days I can’t leave bed because I’m that sore and exhausted. It’s horrible!”
He felt that the impact on young people is important. Even if fewer young people are dying from covid-19, long covid could be with them for a lifetime. There is a pressing need for Governments to raise public awareness of long covid, to urge lockdown compliance and to limit community transmission.
Research suggests that 10% of the infected population will suffer from long covid and, in line with other post-viral syndromes such as ME, it may become a chronic, potentially lifelong condition. The president of the British Society for Immunology has said:
“As the pandemic has gone on, it has become clear that…Covid-19 is more far reaching than affecting just the respiratory system”.
They went on to note that this may be a consequence of a generalised systemic inflammatory response, mediated by the body’s “cytokine storm” against covid. Shortness of breath can lead to pulmonary fibrosis, and circulatory, cardiovascular, renal, neurological and mental health impacts, and very real survivorship challenges, including depression and suicidal thoughts.
The British Heart Foundation, the British Lung Foundation and others also recognise the role that inflammation plays in the disease’s progression. Anyone working in an intensive therapy unit knew long before covid that such a systemic inflammatory response can lead to multi-organ failure and death.
Long covid is real, and it also affects young people such as Bailey-Lee. There is limited empirical evidence on how to diagnose, support, treat and rehabilitate sufferers. In Scotland, we advocate an holistic approach, and we are currently considering the organisation of services. More than 70,000 Scots will be provided with free vitamin D, which is recognised as having a role in prevention and moderation of morbidity. This week, Food Standards Scotland launched a vitamin D campaign for the general public. The Scottish Chief Scientist Office recently concluded research calls into the long-term effects of covid-19, with funding totalling £2.5 million being recommended for nine projects across Scottish universities. In addition to that funding, the Scottish Government are supporting an ongoing study on the longer-term lung health of covid-19-related acute respiratory distress syndrome survivors, and they are also supporting Scottish participation in the UK-wide post-hospitalisation covid-19 study.
Of course, it is also key to listen to those living through the condition, such as Long Covid Scotland and the Post Covid Syndrome Support Group. That is vital to improve understanding of the longer-term effects and develop effective clinical interventions to support recovery and rehabilitation. Post Covid Syndrome Support Group founder Louise Barnes has called for a shift to effective treatment after she made contact with a clinical team in South Africa regarding a peer-reviewed study looking at the use of a six-vitamin stack protocol. Despite being sceptical, Louise felt that she had nothing to lose so participated in the trial. Within three days, she saw notable improvement:
“I felt within days almost back to normal”.
That study is promising, as we know from leukaemia treatment the valuable role that vitamins or micronutrients can play. Of course, a six-vitamin stack will not suit big pharma unless they develop an analogue of the vitamin stack that they can patent. I have not looked into the detail of the study, but it is very positive and deserves serious consideration.
What is the UK Government’s strategy? It is clear that we must take action now. We must properly record, research and develop means to defeat the mechanisms of long covid. Otherwise, we are creating further resource and financial burdens for the NHS well into the future. Will the UK Government develop appropriate additional support and funding for the NHS to meet these challenges, however they are to be delivered? Will the Government now accept the pressing need for continuation of the £20 universal credit uplift and its extension to legacy benefits, in the light of long covid?
We also need action on sick pay rates. The UK has one of the lowest sick pay rates in the OECD. The SNP has continuously called on the UK Government to increase SSP in line with the real living wage. It is a disgrace. The UK Government’s meagre £95.85 rate of SSP is poverty pay in comparison with Ireland, where the rate is £266, and other countries such as Germany and Austria, where it is more than £280. Long-term, meaningful economic support must be put in place for long covid sufferers. Will the UK Government immediately increase SSP, so that long covid sufferers have financial support? Most importantly, will the UK Government match the Scottish Government’s ambition and fund research into post-covid syndrome, allowing sufferers hope that their new normal is not post-covid syndrome or long covid?
I would like to begin by thanking the hon. Members for Oxford West and Abingdon (Layla Moran) and for Central Suffolk and North Ipswich (Dr Poulter) and my hon. Friend Andrew Gwynne for securing the debate, and I thank all Members for their very personal contributions.
For thousands, covid-19 is something neither succumbed to nor overcome in a matter of days. For many, it has lasting mental and physical impacts that affect the body many months after initial infection. It is nearly a year since the first case of coronavirus was recorded in the UK, and still very little is known about the debilitating post-covid syndrome. I pay tribute to the LongCovidSOS group and all the online support groups that work tirelessly to raise this issue and support one another.
At this stage, we cannot say with any real certainty what exactly long covid is. Nor we can accurately predict the true number of people suffering symptoms of long covid. The Office for National Statistics has published estimations suggesting that the proportion of people displaying symptoms for a period of over 12 weeks could be as many as one in 10. Let us be clear, this is not a syndrome being experienced by a small minority of people. There is also finite evidence on the best way to treat the condition, which has vastly varied symptoms. Without a clear understanding of exactly what the condition is, this makes it far more difficult for health professionals to manage and support those who are affected by it. With better data collection and further research, and by listening to those living with long covid, we can begin to effectively treat the condition. Will the Minister please outline what work the Government are doing to close this gap in knowledge?
What we do know for certain is that the symptoms of long covid can be severe, completely debilitating and utterly crippling, preventing people from living their normal lives. This impact can have a detrimental effect on people’s mental health, their wellbeing and, as we have heard today, their physical wellbeing. It leaves many unable to return to work months after their initial battle with the virus and causes a great deal of uncertainty in already anxious minds. It is crucial to understand that this stress and anxiety can cause relapses in the condition, as sufferers themselves have told me.
Many people with long covid do not know when or if they will return to work. Without action from the Government, the long-term social and economic consequences of this could be grave. Key workers have an increased risk of catching covid. NHS workers in particular are at least three times more likely to contract it than the general population, and this could wreak havoc on our frontline workforce. What steps are the Government taking not only to protect the NHS workforce further but to ensure that staffing levels are such that patients continue to be treated and the population continues to be vaccinated?
The availability of treatment and care for individuals experiencing long covid must be a matter of immediate concern to the Government, and I urge them to adopt a patient-led approach. Could the Minister please outline what progress has been made on setting up long covid clinics, and what plans the Government have to extend this programme in 2021? There simply cannot be a postcode lottery of service provision for long covid sufferers. No one person’s life is more valuable than another, and the Government must ensure that that is reflected in access to treatment.
Some long covid patients are being denied referral because they never had a positive covid test. For the many people who suffered with covid in the first wave back in March and April and were not eligible for testing at the time, that is proving incredibly frustrating. Will the Minister outline what measures the Government will take to ensure that people do not miss out on much needed treatment, particularly if they fall into the category of people who were unable to have a covid test in the first wave?
The Government have to step up and show leadership. There has to be clear messaging to the public to ensure that they are sufficiently informed about the condition and about where to seek help if they need it. That messaging needs to combat the misinformation about covid that is out there presenting it as a myth or similar to the flu. I would like to pay tribute to the former MP for Leigh, Jo Platt, who, along with LongCovidSOS and support groups on Facebook, is campaigning tirelessly on this issue. As Jo told me, there are no words to describe how covid deniers have made her feel. She said: “For people to seriously deny our experiences has been soul-destroying.” We have to get this right.
It is also essential that healthcare professionals at every level of the NHS are properly trained to treat long covid, distinguishing between the different conditions that fall under the term. This includes frontline mental health workers, as the mental health implications of long covid can be severe. Within an acute crisis, it is far too easy to push longer-term concerns to the periphery. Should the Government continue to do this with long covid, they do so at their peril.
Throughout this crisis, far too many people have felt that their voices have been silenced. For the sake of the health and wellbeing of all those living with long covid, please do not silence them. There is still so much that is unknown about this virus and how it affects us, but one thing that is certain is that long covid should be a matter of serious concern, and without concerted action by the Government we may be living with the consequences of this for many years to come. We are still learning so much more about the impact of covid-19 on our communities, our bodies and our wellbeing. There are thousands of people out there currently suffering with long covid. They are relying on us, and on the Government, to get it right for them.
I thank the hon. Members who tabled today’s debate on this very important topic. We know that long covid can have a significant impact on the people affected, and I am proud that this Government are committed to doing everything possible to support people who are still suffering with effects on their mental and physical health.
Covid-19 is still a new disease. Indeed, Layla Moran began by identifying that the disease pathway of covid is so new that we still do not have the evidence to understand fully what long covid is. It is not yet clear what the medical, psychological and rehabilitation needs will be for those experiencing long-term effects of the virus.
Typically, the time to recover from covid-19 is 10 to 14 days for mild and moderate cases; however, some people may experience lasting impacts on their health. Long covid describes a mix of mental and physical health effects. Research from the ONS has shown that one in 10 people has covid-19 symptoms for 12 weeks or longer, and it estimated in mid-November that around 186,000 people were experiencing symptoms between five and 12 weeks post infection.
I will start by giving an update on the important work that the Government and the NHS are leading into long covid. We continue to work closely with the NHS and other stakeholders to develop and deliver high-quality services for patients, to make rapid progress in terms of research, and to ensure effective communications and engagement with the public and the workforce. The NHS launched a five-point plan for dealing with long covid and providing support on
The NICE guidelines for long covid, and how to manage it, were published on
The NHS announced the “Your COVID Recovery” online service on
The Secretary of State spoke to the House in October about his visit to the cutting-edge long covid clinic at University College hospital. There he met people in their 20s and 30s who are living with the long-term effects of the virus. It has completely changed their lives. There are now 69 centres operating across England, where hundreds of patients are already receiving treatment. Those centres are assessing and diagnosing people experiencing long-term health effects as a result of a covid-19 infection.
A further 12 sites are earmarked to launch in early 2021, and they will be in the east midlands, Lancashire, Cornwall and the Isle of Wight. The NHS and the wider scientific community are currently working to better understand the disease: the course of the covid-19 virus, including symptoms, severity and duration, long-term effects, and how best to support recovery. NICE and UK Research and Innovation have invested £8.4 million in a post-hospitalisation covid-19 study at the University of Leicester. This is one of the world’s largest comprehensive studies of the long-term health impacts of covid-19 on hospitalised patients. The study aims to better understand and improve long-term outcomes for survivors following hospitalisation with covid-19. The National Institute for Health Research and UKRI have also announced a joint research funding call for ambitious and comprehensive research into the long-term physical and mental effects of covid-19 in non-hospitalised patients. The panel is currently reviewing the bids and projects and this is expected to commence in early 2021.
The NHS has launched a long covid taskforce to help to lead the NHS response to long covid. It will produce information and support material for patients and healthcare professionals and develop a wider understanding of the condition. Led by the director of primary care at NHS England, Dr Nikita Kanani, the long covid taskforce brings together patients, charities, researchers, clinicians, policymakers and the royal colleges to provide an advisory function and to support the delivery of the NHS five-point plan. My colleague the noble Lord Bethell continues to hold monthly long covid roundtables to provide updates from NHS England, NHS Improvement and others working on various areas of long covid.
The covid-19 vaccine marks the start of a fightback against the pandemic. The NHS is deploying vaccines right across the UK and this has reached 3 million today in line with the founding mission to support people according to clinical need, not ability to pay.
Long covid is a new challenge for healthcare systems all over the world, not just in the UK. The UK is committed to listening to people with long covid and leading the way in excellent research, treatment and care. I pay tribute to the hard work and dedication of the NHS staff who set up these services to quickly meet sufferers’ medical needs all over England, to the researchers working hard to better understand this issue, and to the people living with long covid for sharing their insight and their experience with us. Combined with further research, the NHS England long covid taskforce, and the additional services and funding that we are providing, we hope to improve lives and aid in and fight against this global pandemic.
I thank all Members who have contributed to this debate, but also all those who were unable to contribute. When we put in for it, we thought that it would be well subscribed, given that, I would wager, most Members in this House will have been contacted by a constituent, or more than one constituent, who now has long covid. For all those with long covid who are watching today, I hope they have the assurance that this House will continue to listen and encourage the Government to take action as our understanding of this disease improves.
We certainly heard some powerful stories today. There is obviously not time to go through all of them. I was struck, as we always are, by the contribution from Andrew Gwynne, who brings the subject to life with his own experience but also rightly asks: what about those who do not have the flexible working that is afforded to us as MPs?
Several Members mentioned that there are learnings that we must take from other conditions. In particular, ME was mentioned by Carol Monaghan, among others. I thank her for her work and leadership on the all-party parliamentary group on ME. There is a lot that we can learn from that.
Dr Poulter rightly raised mental health, and the trauma that people face as a result of being hospitalised with covid. I think that almost all Members mentioned financial support, and many highlighted the failure of the welfare system to cope with this changing landscape. That is an area that we continue to need to push on. My right hon. Friend Mr Carmichael put it very well when he said that the Government need to take a humble approach to the changing picture.
I thank the Front Bench spokespeople, and particularly the Minister for her response and for listening so diligently to the debate. I thank her for the update on the research and the NHS response. It is clear that we are finally getting going, but I hope that she also recognises that we need to continue to finesse and change as our understanding evolves. I hope she will take a personal interest in that. Finally, it would be wonderful if she would consider a meeting with me and others in the all-party group, to talk about the areas that she did not cover, in particular publishing the register, if that is possible, and a recognition by employers that long covid could be an occupational disease, and the support that would be needed by those who suffer from it.
I thank the hon. Lady for winding up the debate, but we now need to move on because we have another full debate.
Question put and agreed to.
That this House
has considered long covid.