Long Covid

Baroness Thornton Excerpts

Thursday 17th November 2022 Lords Chamber

Moved by

[Baroness Thornton]

That this House takes note of the short and long term challenges presented by Long Covid.

[Baroness Thornton (Lab)]

My Lords, I think the first thing I need to say is that Covid is not over. People are still catching Covid; some are still being very ill; some end up with long Covid. Our NHS is still battling with Covid itself and the terrible effect it has had on the whole of the NHS’s ability to do its job and catch up with the backlog which Covid produced, on top of the waiting lists which already existed and were growing in 2019 before the pandemic. This is the background of our discussion today

Given the number of speakers across the House for this debate, I am very pleased that so many agree it is about time we reflected on the emerging short and long-term challenges of long Covid. I thank the Library, the British Medical Association, Nuffield Health and many others who provided us with such large quantities of briefing.

I thank all the speakers who will follow me, and I anticipate a well-informed debate which will no doubt be challenging for the Minister, not least because, although this is designated a health debate, I think if 2.1 million—and I have seen lower and higher figures—of our fellow citizens are reporting experiences of some or many of the range of symptoms of long Covid, then this has wider societal implications. It affects the workplace, incomes, families and our mental health and social care services. It raises questions about defining a disabling condition, which will affect treatment, support, insurance, pensions, income support, careers, jobs and the reasonable adjustments which need to be made, and how we will support children who may get long Covid.

Part of the challenge is that it seems there is yet no internationally agreed clinical definition of long Covid, and the evidence base on what constitutes long Covid, in terms of range and length of symptoms, is still emerging. In October 2021, the World Health Organization defined “post-Covid-19 condition” as occurring

“in individuals with a history of probable or confirmed SARS CoV-2 infection, usually 3 months from the onset of COVID-19 with symptoms and that last for at least 2 months and cannot be explained by an alternative diagnosis.”

More recently, the NICE guidance on managing the long-term effects of Covid-19 covers care for

“people who have signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than four weeks and are not explained by an alternative diagnosis.”

As noble Lords will be aware, common symptoms include fatigue, shortness of breath, chest pain, problems with memory, heart palpitations, dizziness, joint pain and many others.

To advance our understanding of long Covid, it is crucial that prevalence data is collected, and this is my first substantive point for the Minister. Government commitments have been made; for example, in June 2021, NHS England committed to setting up a long Covid registry to collect long Covid activity data. However, to date, data is not collected accurately and consistently across the UK, meaning the UK Government are still relying on ONS self-reported data. When will this important data collection happen in a consistent fashion?

There are currently a lot of unknowns when it comes to treating long Covid. Despite recent investment, more research is needed to increase the understanding of the condition, including psychological aspects, and to develop more effective treatments. In October 2020, NHS England and NHS Improvement set out a five-point plan for long Covid support, which included a commitment of £50 million to fund research. The Government said that £20 million of the £50 million previously committed to research would go into 15 UK-based research studies, through the NIHR, the National Institute for Health Research, to better understand the condition, improve diagnosis and find new treatments. As part of this investment, various studies are investigating whether there might be potential pharmaceutical treatments that would be effective in treating long Covid.

Long Covid is a focus for researchers globally, with the European Commission announcing it would accelerate its research into long Covid and develop treatments, while the United States is also running clinical trials. I would like to ask the Minister whether we are participating in these research programmes, and, if so, what are the outcomes?

Similarly, major pharmaceutical companies have demonstrated an interest in developing targeted new treatments or repurposing existing ones. Although researchers have been surveying the broad spectrum of symptoms associated with long Covid, it has to be said they have not found one biological explanation. It is likely there are various mechanisms involved. Similarities between long Covid and other post-infection syndromes need to be considered, and I am confident this will be raised during the debate today.

Despite the investment into research for treatments for long Covid, much of the research is in its early stages, resulting in a lack of evidence on effective treatments. In terms of resources, of the million or more who are reporting with long Covid, only 60,000 patients can access treatment. This means that hundreds of thousands of people with long Covid are feeling isolated and frustrated in their search for treatment, and as a result sometimes live in poverty and despair. I would like to commend the patient groups that have been doing a great job in mutual support and campaigning.

Let us look at the research, of which there must be much more. It is true the Government agreed to invest £50 million in research, although I think there are some blockages, which I would like to raise with the Minister, such as approvals to facilitate research pathways, and through developing pathways support more rapid implementation of promising findings in relation to the diagnosis, assessment, and treatment of long Covid. It would seem, despite the increased funding in research, the UK Government need to increase the infrastructure to meet the scale of the problem. While the MHRA, through the Innovative Licensing and Access Pathway, aims to accelerate the time it takes to get treatments to market, there may need to be some changes to clinical trials research legislation to enable this to be carried out. Is that the case, and are the Government considering it, and what should happen next, because it is vital that if the research is there and the pharmaceutical industry wants to bring forward treatments, we should make sure the pathway is completely clear of any obstacles.

There are huge challenges concerning work and long Covid. The first is the need to support the post-pandemic return to work, which we have discussed before in this House. Since the pandemic, there has been a marked increase in the number of workers aged 50 to 64 who have left employment. Recent labour market statistics from the ONS found that the number of people in this age group classified as “economically inactive” stood at 374,000-plus from June to August this year, compared with 37,000 in the first three months of 2020, as Covid-19 took hold. A recent analysis by the ONS found that 51% of people in this age category who had left work since the pandemic and had not gone back had reported a physical or mental health condition or illness, including long Covid. Apart from anything else, this points to the fact that people need extra support from employers to prevent them being squeezed out of the workplace. It seems to me that guidelines for employers are required—are they available? Are they being planned?

There are health and social care workers who have been particularly exposed during the pandemic. Of course, long Covid makes it even more difficult for the NHS to function as it should, to say nothing of the lives being wrecked and the families suffering terribly. The Industrial Injuries Advisory Council has made its recommendations to the Secretary of State regarding the circumstances in which long Covid should be prescribed as an occupational disease. Why have the Government not acted on this? Covid special leave provisions ended across the UK by 1 September 2022. The British Medical Association has repeatedly called for enhanced Covid-19 sickness pay provisions to continue until a long-term strategy for dealing with Covid-19 is in place. I need to know why the Government have not put a sufficient compensation scheme in place for healthcare workers who are developing long Covid.

Further to this, the Secretary of State for Work and Pensions published the Industrial Injuries Advisory Council report on Covid-19 and its occupational impacts. This report was provided to the Secretary of State and was laid before Parliament yesterday; I thank the Minister for making it available to this House. The council argues that there is sufficient evidence to recommend prescription for health and social care workers whose work brings them into frequent proximity to patients and clients where there is a significantly increased risk of infection, subsequent illness and death. Now that the Government have that report, and it has been made public, will they act upon it?

We need to address the issue of preventing long Covid in children. Will the Government develop a campaign with more consistent messaging about long Covid and clear information and guidance for parents regarding the benefits of vaccination for children and how it can protect children from long Covid?

Clearly, there needs to be more support for health professionals to identify and treat long Covid. All health professionals should be supported and equipped with up-to-date information to ensure that they understand the variable symptoms of long Covid and are aware of the available support and how to refer people to it. In terms of the funding and resources to establish multidisciplinary services, pathways for long Covid should focus on addressing patients’ multisystem symptoms and rehabilitation needs and provide individualised care plans accordingly. There also needs to be a more consistent provision of long Covid clinics, including for children, so that there is less variation in waiting times for treatment. Increased funding and independent workforce planning are key to the success of these services. How many more multidisciplinary centres are planned, and by when?

Turning to improved financial and wider support for people unable to work due to long Covid, the Government need urgently to provide employers with better guidance on how to support employees with long Covid. Perhaps the Government should set up a task force to review the UK’s statutory sick pay allowance system and whether it should be increased so that it is in line with other OECD countries. Does the Minister accept that the decision to end special Covid leave for NHS staff has put patients and healthcare workers at risk? Why do the Government not reinstate this scheme until a longer-term compensation scheme to support staff is in place?

At the end of this debate, I would welcome an acknowledgement by the Minister that the Government recognise that long Covid is having a major impact on productivity, employment and wider society, as well as our health services. I would like the Minister to tell me that they have a plan for this to be tackled in a comprehensive fashion across government. I beg to move.

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[Baroness Thornton (Lab)]

My Lords, I thank the Minister for that reply and the noble Baroness, Lady Neuberger, for outing me, because I did not declare my interest as a non-executive director of the Whittington; she is my boss there. I will just use these last few minutes to say that this was an excellent debate and I hope it has the kind of impact that most speakers said they would like. I will just mention a few of them.

I thank the noble Lord, Lord Bethell, for a wonderful contribution. There was a time when he and I felt that we saw more of each other than we did of our partners. I should include the noble Baroness, Lady Brinton, in that comment.

The noble Baronesses, Lady Scott and Lady Meacher, were correct to make the links they did and to raise issues such as there being no diagnostic blood tests for ME and CFS, even now. My noble friend Lady Donaghy was also completely right about the need to raise awareness.

The noble Lord, Lord Kakkar, is always concise and I am always grateful for the medical exposition he gives, which I would never dare attempt. I was hoping he would do so and indeed he did. I wish I had thought of the words “national protocol”, and I hope the Minister takes the opportunity to look at what he said about how data could be used. I do not wish to bring the two together, because I am sure they know each other, but I thought that his offer was very pertinent.

The right reverend Prelate the Bishop of Exeter and the noble Baroness, Lady Watkins, brought to our attention the problems in rural areas and with mental health. I am very grateful to my noble friend Lord Stansgate because he and other noble Lords, such as the noble Earl, Lord Clancarty, and the noble Baroness, Lady Masham, talked about the personal experiences of long Covid of people they had spoken to. It is very important that we give voice to those experiences in this Chamber. Many noble Lords did that and I had hoped they would, because I knew I would not be able to in my opening remarks.

I am very grateful to my noble friend Lord Griffiths for his extremely kind words and for reminding us, as he often does, about the human costs of the pandemic—not just the medical costs. My noble friend Lady Taylor talked about the significance of long Covid for society, and I was very struck by the noble Baroness, Lady Brinton, who again reminded me of a book that I still have to read. I promise her that I will now read it because, as she says, history has things to teach us and we need to hear those words—and the Minister does too.

My noble friend Lady Pitkeathley quite rightly talked about carers and unpaid carers. I thank her too for her expert round-up.

I thought that the Minister did the best he could—I have been in his place; there are so many experts in this House, and as a Minister you can only do your best with them—but I think the noble Lord needs to go through this debate. I asked about eight or nine specific questions, some of which he answered and some of which he did not. For example, he did not address the question of the Industrial Injuries Advisory Council. It is very important for our NHS staff to know the answer. I should be grateful if the Minister and his officials could go through this debate, pick out those questions and write to everybody who took part in this debate, putting the answers in the Library, so that we can see and take this forward as we know we will need to do.

Motion agreed.