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 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 the hon. Member for Central Suffolk and North Ipswich (Dr Poulter) and my hon. Friend the Member for Denton and Reddish (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 the 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.”
2:30 pm
Dr Dan Poulter (Central Suffolk and North Ipswich) (Con) [V]
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 the hon. Member for Oxford West and Abingdon (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 the Member for Mid Bedfordshire (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 move 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 congratulate the hon. Member for Oxford West and Abingdon (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 regard 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.
I wish to concentrate my remarks in this debate on two things, which will hopefully show that even though long covid is not so 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 improve understanding of 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.
I commend the hon. Member for Oxford West and Abingdon (Layla Moran) for bringing this debate to the Floor of the House today. It is much needed, and I am pleased to be able to 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 background of 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 10 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.
2:48 pm
20 of 52 shown
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 being 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 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.
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—
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 the Member for Feltham and Heston (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.