Layla Moran: Protect frontline workers who have Long Covid

You would think, wouldn’t you, that if you caught a disease because of your work, that your employer would be obliged to look after you.

This is not the case for frontline workers, even public sector workers. In a parliamentary debate she’d secured on Long Covid, Layla Moran highlighted the cases of three who had experienced the wrath of HR departments after contracting long Covid.

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.

She asked the Minister for three things – better reporting of Long Covid – with the daily stats – research into the condition and how to treat it and recognition of the condition in the social security system and by employers.

I know several friends who have Long Covid and it is really debilitating.

Alistair Carmichael also spoke in the debate, saying that he expected problems in the social security system which had already shown its utter uselessness in dealing with people with ME.

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 the hon. Member for Oldham East and Saddleworth (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.

A Universal Basic Income would make a big difference, he said.

As the Chair of the All Party Parliamentary Group on Long Covid, Layla can speak with some authority on these issues. I think that the UK Government has been better than the Scottish Government which doesn’t even have a decent strategy for dealing with Long Covid and that in part is due to the fact that Layla’s leadership on this has been so good.

Here is Layla’s whole speech:

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.

* Caron Lindsay is Editor of Liberal Democrat Voice and blogs at Caron's Musings

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