Long Covid

Layla Moran Excerpts

Thursday 14th January 2021 Commons Chamber

[Layla Moran (Oxford West and Abingdon) (LD) [V]]

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 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 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.

--- Later in debate ---

[Layla Moran [V]]

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 the hon. Member for Denton and Reddish (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 the hon. Member for Glasgow North West (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.

The hon. Member for Central Suffolk and North Ipswich (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 the Member for Orkney and Shetland (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.

[Madam Deputy Speaker (Dame Rosie Winterton)]

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.

Resolved,

That this House has considered long covid.