Long Covid

Wendy Chamberlain Excerpts

Thursday 24th February 2022 Commons Chamber

[Wendy Chamberlain (North East Fife) (LD)]

We were told this week by the Prime Minister that the worst of covid was over and that we are moving from responding to covid as a crisis to it being something we will be living with for the long term. I think we all hope that the Government’s assessment is right and that after two long years of sacrifice, the worst is over.

This Adjournment debate, granted before last week’s recess, is also timely, because missing from the Prime Minister’s statement on Monday was something very important: how we deal with long covid. In fact, the Prime Minister did not comment on long covid at all. He talked about omicron being a less severe variant, and he said that covid should now be treated like the flu, but that overlooks the fact that the debilitating symptoms of long covid are not impacted by the severity of someone’s initial covid symptoms. Someone can have very mild covid symptoms initially, but be left with an endless illness stopping them from carrying out the most basic activities. That is one of the reasons why my party wants everyone to continue to have access to free testing—the fight against covid is not over just because we want to appease Back Benchers.

It is not really possible to describe long covid, but doctors now think that it is caused by somebody having an ongoing immune response to covid, long after the virus has left their body. What that looks like differs from person to person. There are 150 possible symptoms, with each person having a unique combination. The most commonly reported symptom is fatigue, then shortness of breath, loss of smell, difficulty concentrating and aching muscles. Symptoms can also include vertigo, fever, vomiting and diarrhoea to name just a few.

Long covid is also relapsing-remitting, which means that symptoms can come and go with little warning. In short, it is complicated, but what we do know is that it is affecting a vast amount of people. According to the Office for National Statistics, in the four weeks before 2 January, 1.3 million people across the UK had it. Considering that the spread of omicron did not peak until 30 December, the actual number of people suffering today is likely to be higher.

Tackling long covid is a challenge that we must take on, as much as tackling covid itself. When I applied for this debate, I caused a little confusion for some: “Why does a Scottish MP want to talk about a health condition when the care of her constituents is under the remit of the Scottish Government?” In some ways, they are right. It would be remiss of me not to pay tribute to the hard work of my friend the Member of the Scottish Parliament for Edinburgh West, who has been leading the way on getting health and social care support for long covid sufferers in Scotland. I know that his calls for proper care pathways, specialist clinics and support from trained district nurses will hugely benefit my constituents and others.

Treatment is only half the battle, however. The focus of this debate is how long covid affects someone’s ability to work and what support they need as a result. If we are now living with covid, we are also living with long covid. We have learned a lot about the disease in the past two years. There was little understanding for people who caught covid in the early days, and no understanding that their symptoms could last, but they have lasted. For that first cohort of sufferers, they have lasted for nearly two years. At first, it might have been understandable to think that they just needed to wait it out for their health to return to normal, but it would be completely disingenuous to say that now. Their symptoms are the reality of their daily life.

I have already mentioned that more than 150 symptoms are associated with long covid. The medical profession is still just starting to grapple with it and most people do not understand it much at all. Sadly, that lack of understanding is causing a stigma, as it often does, which is all too well known by sufferers of other diseases such as ME. Like long covid, fatigue is a common symptom of ME that also comes and goes.

When preparing for this debate, I spoke to representatives from Action for ME who have extensive experience with the problems facing those who describe fatigue as their primary symptom. They told me that people with ME face a significant stigma and face being told that their illness does not exist or that they should learn to just push through. They also told me that the same narrative and the same problems are being reported for the hundreds of thousands of people who have severe fatigue as a result of long covid. Indeed, Action for ME has had to close its helpline and waiting list because such a surge of people have contacted it. I cannot believe that that is unrelated to long covid.

Thousands of people are left suffering from an illness that may well make it hard for them to work, but their colleagues and employers do not necessarily believe that there is anything wrong with them. How can they explain an absence or ask for support in the face of being told that they are fabricating their debilitating symptoms? A better definition, guidance for employers and a Government-led campaign to boost awareness and understanding would go a long way towards changing attitudes to long covid.

The problem is exacerbated for people who do not have a formal diagnosis of long covid to fall back on. The Government’s working definition of long covid is a condition where symptoms cannot be diagnosed as being from anything else but the after-effect of a covid infection, but not all sufferers of long covid have had a positive covid test result. For the past 18 months, covid tests have become a part of daily life for most of us, but those who got covid in the first months of the pandemic were ill without ever being tested because the tests simply did not exist. That is a huge problem in a system where support—from employers or the Department for Work and Pensions—requires proof.

There is a future problem too that I have already referred to and that perhaps the Government would like to pre-empt. On Monday, the Prime Minister announced that free testing will end in just five weeks’ time, which means that more people will have covid, and might then have long covid, without a formal diagnosis. It would be a small but vital change to ensure that the diagnosis does not rely on someone having a positive test result on their NHS record.

[Mr Steve Baker (Wycombe) (Con)]

Would antibody testing achieve the aim the hon. Member intends, rather than antigen testing, which is what we are currently doing?

[Wendy Chamberlain]

I thank the hon. Member for his intervention. I would accept either testing, but I am asking that proof of a positive test does not need to be a requirement for a diagnosis of long covid. Of course, it would be better for many reasons to just keep testing everyone, but failing this, I ask the Minister to speak to his colleagues in the Department of Health about how long covid can be diagnosed without a test result, and to commit to making sure it is not required for recognition of the disease by his own Department.

I am sure that, in his remarks, the Minister will tell me that there is no evidence of a problem of long covid and keeping people in work, but that is because the information is not being collected. As I have said, 1.3 million people have long covid, and of those almost two thirds report an impact on their ability to carry out their daily lives. It is logical to assume that this includes employment—getting up, commuting, concentrating and completing a full day of work—and I would urge the Minister urgently to collect the data needed to find out the extent to which people with long covid are struggling at work.

I also urge the Minister urgently to provide guidance to employers as to how they can support employees with long covid. At the very least, affected staff need understanding, but beyond this, employers need to know what reasonable adjustments are appropriate, how to support staff who are on long-term sick leave and how to adjust their business practices to function in the face of increased absences. I have some experience in that I worked for a time in human resources—I have some experience with dealing with issues that arise as a result of long-term health conditions—and I have great sympathy for those in human resources who are tackling this problem now on behalf of their employers.

This problem may be larger for some employers than others, particularly given the number of key workers who caught covid by working on the frontline during the first waves of the pandemic, and I have been written to by many constituents in this position. To mention just one, a constituent of mine was working as a healthcare support worker in the first wave of the pandemic when she caught covid from a patient and, as a result of long covid, she has been unable to return to work. Her employer, the local council, wants to help, but it does not know what is best to do. There will be thousands of employees in the same position all around the country, and employers need guidance from the DWP about the condition, and what support they can and should be expected to give. In this regard, I am told that it would be helpful if long covid was classified as an occupational disease. I therefore ask the Minister to use his time today to advise whether that is under consideration, and then to bring forward such guidance as a matter of urgency.

I am sure the Minister will agree with me in hoping that, with the right support and guidance, most people experiencing long covid will be able to stay in their jobs—to keep working, to keep earning, to continue in their careers—but, sadly, that will not be the case for everybody. There will be those who cannot work as much as they used to or who cannot work at all, and that is where our social security system steps up. As the Minister knows, it is already official Government guidance that for

“anyone with a disability or long-term health condition, including long Covid, there is a strong financial safety net”,

and it goes on to list available support as statutory sick pay, universal credit and personal independence payments.

However, as is so often the case with benefits, it is not that easy. Applying for benefits is complicated, as there are a lot of forms, a lot of boxes to tick and a lot of assessments. When someone has a debilitating condition such as long covid or one of the other relapsing-remitting diseases I have already mentioned, they may not be able to sit and complete a 30-page form in one go, or even in the course of a week or two. Research by the MS Society has shown that a third of people with MS thought four weeks was not enough time to complete the forms, but the majority of applicants did not know that they could request a two-week extension.

One solution is simply to extend the time allowed to complete the forms. There is no incentive for claimants to take excessive time because they want to get the support that they need. Meanwhile, DWP resources are used up requiring people to request extensions. Setting the time to return the forms at eight weeks would be a simple and cheap solution. If the Minister disagrees and prefers a system that does not work for disabled people and also costs his Department money, will he at least commit to including clear information on the PIP application form on how people go about applying for an extension?

While we are thinking about the forms, does the Minister agree with me that the forms ought to be designed to be usable by the people completing them? People with relapsing-remitting conditions, of which long covid is just one, do not find those forms usable. There is no space on the forms properly to explain the impact of having fluctuating symptoms. They do not work for people with long covid, and these forms must be fit for purpose. I strongly encourage the Minister to consult with disabled people on this.

Long covid is a novel condition, and the DWP, like all of us, is having to learn and adapt, but as DWP staff see more and more individuals with long covid, it is vital that they receive the appropriate guidance and training. Universal credit requires claimants who can do so to look for work. In fact, more recently it required claimants quite quickly to look for just any work at all. Are work coaches trained in what sort of requirements are appropriate for someone with a relapsing remitting disease, where they fatigue quickly or have brain fog or any of the other hundred-odd symptoms of long covid? I look forward to hearing from the Minister about what guidance is in place and what support is offered, but I fear there is little.

The same is true for personal independence assessments. A PIP assessment is supposed to determine what additional support someone needs as a result of their disability or illness, but again that is an impossible test for anybody with a fluctuating condition. They could be functioning one day, or even ok, but the next day they are unable to get out of bed. One assessment—just one assessment on one day—determines whether they get support or not, and that system does not work. Of course, the system is failing not only long covid sufferers, but those with ME, multiple sclerosis and chronic pain, to name a few. There is a simple solution that I ask the Minister to adopt, which is to allow more weight to be given to medical evidence and the information provided by doctors and experts on someone’s condition, or by those people who see claimants on their good days and on their bad days. It is an obvious solution.

There are other ways that the assessment process could be reformed better to support all disabled people, including those with long covid: using specialist assessors, ending the five-week waiting period and increasing payments in line with inflation are vital for the health and wellbeing of all disabled people. I await the publication of the Government’s White Paper this spring, and wonder whether the Minister is able to provide an update on that this evening.

However, those with long covid cannot wait until then for their condition to be properly recognised by the DWP and their employers. The pandemic has been the biggest mass-disabling event since the first world war, and long covid is not going away. We have seen covid rip through classrooms over the past few months. Long covid does not just affect people of working age, and children who suffer from it are going to miss education and training. It does not matter if, like me, someone views social security as a public service and a safety net, or if they see the DWP as a means to get people into work. From either perspective, the Government must do more to support those with long covid to stay in work, get into work, and get the support they need if they cannot work.

We need information about the impact of long covid on employment, and a formal recognition of long covid as a debilitating condition, or an occupational health disease that affects someone’s ability to work. We need proper guidance and training for employers and DWP staff, and an assessment process that works for people with fluctuating symptoms. The Prime Minister told us on Monday that it was time to get our confidence back, but those words are cold comfort to those suffering from the debilitating impacts of long covid. They need practical support and they need it now, and I urge the Minister to heed them.