Meeting of the Parliament

Meeting date: Tuesday, March 14, 2023

Official Report 1051KB pdf

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International Long Covid Day

The final item of business is a members’ business debate on motion S6M-07996, in the name of Jackie Baillie, on international long Covid day. The debate will be concluded without any question being put.

Motion debated,

That the Parliament recognises that 15 March 2023 is International Long Covid Day; understands that, in Scotland, it is estimated that 187,000 people have long COVID; further understands that there is currently no simple cure and that long COVID can affect people of any age and background, including children, regardless of the severity of their original COVID-19 symptoms; considers, with regret, that the funding available for treatment, support and clinical research, remains too low; is concerned at reports that there is an increasing postcode lottery for specialist NHS services in Scotland for the diagnosis and treatment of the condition, potentially leading to inequalities in patient outcomes; notes the belief that key workers with occupational long COVID should receive compensation and pension entitlements; further notes the view that more should be done in respect of improving air quality through CO₂ monitoring and HEPA filtration in schools and public buildings, and notes the view that more work is needed to understand and treat what it sees as an often debilitating illness.

17:14  

Tomorrow—Wednesday 15 March—is international long Covid day. According to the Office for National Statistics, more than 175,000 people in Scotland have long Covid. Three years on from the first wave of the virus in Scotland, people who are living with the condition feel let down by the Scottish Government. In the words of Anna, formerly from Dumbarton, who has long Covid,

“The current government and its institutions have failed us. It is as if long covid doesn’t exist.”

In its briefing that was provided prior to the debate, Long Covid Scotland outlined the steps that the Scottish Government must take—they cover everything from data and research to specialist long Covid treatment hubs. I commend Long Covid Scotland’s briefing to whoever is the incoming health secretary and ask that they sit down with Long Covid Scotland and Long Covid Kids Scotland, as the voices of those with lived experience, and come up with a plan for full implementation of their recommendations.

The first area that I will touch on is funding. When £3 million of funding for long Covid was first announced, 74,000 people were reported as having the condition. That number has almost trebled, but the amount of money has remained the same. The services that will help with long Covid also apply to people with ME and chronic fatigue syndrome. Many of the symptoms are similar, so this could be a real opportunity to create tangible change for all those who are living with energy-limiting and fluctuating chronic illnesses in Scotland. I hope that the Government will seize that opportunity.

The £3 million for long Covid treatment was shared among each of the health boards but, to be frank, it was not enough. The response from a freedom of information request that I submitted last year showed that not one health board was awarded all the funding that it believed it needed to treat the condition. Uncertainty around funding levels has created a significant barrier to implementing treatment plans, and the length of time that it took for the Scottish Government to release funds led to delays of over a year for people to access services.

Does Jackie Baillie agree that the glacial progress in getting money to health boards, along with the small quantum of funding, is keeping us back? Health boards in England and Wales are much further on in providing care pathways for sufferers of this terrible condition.

I absolutely agree with Alex Cole-Hamilton’s contention, but he should have added that there is no consistency in provision. The services that are provided very much depend on where someone lives—a classic postcode lottery. I will take up his point further. As of May 2022, NHS England had allocated £224 million to support the assessment and treatment of long Covid, with £90 million of that funding allocated in 2022-23. Applying the Barnett formula to the figures would produce funding of £21.7 million in Scotland, but the Scottish National Party Government has provided only a fraction of that amount. Where are the missing millions?

The Scottish Government should also collect better data on the number of people who are living with long Covid, including children and young people. Health boards that have responded to the COVID-19 Recovery Committee’s long Covid inquiry have stated that one of the biggest barriers to service provision has been a lack of public health data on the condition. Health boards cannot accurately treat the condition if they do not know the scale of the problem. There is absolutely no excuse for not collecting the data. Covid is still with us and so, too, is long Covid.

The additional challenge with the lack of data is that young people’s education is being affected because schools are unable to identify people with long Covid and put in place recognised strategies that will help with their education.

I very much agree. That reminds me of the Scottish Government’s suggestion at the time that we should cut off the bottom or the top of doors to increase ventilation. We need to be serious about how we treat Covid in classrooms.

Long Covid can be utterly debilitating, so I very much welcome the COVID-19 Recovery Committee’s inquiry into the condition. One respondent to the committee’s call for evidence said:

“I cannot stand in the shower. I often can’t get dressed or wash. I can’t stand for longer than 10 minutes without pain and symptoms. Memory issues have resulted in me forgetting to turn off the oven or blow out candles. I am unfit for work.”

Previously healthy children are now confined to wheelchairs. Doctors and other front-line healthcare workers have lost their jobs because they have been exposed to long Covid. While people with long Covid remain untreated, their ability to work diminishes each and every day.

On Jackie Baillie’s point about the evidence that the COVID-19 Recovery Committee has heard on long Covid, does she share my concern about the evidence that many people’s general practitioners do not have a proper understanding of long Covid, which has left too many having to go private and pay for treatment that they should get for free under the national health service?

The member raises an important point. My understanding is that one in five people with long Covid has sought private medical treatment, because they are not getting tests or treatment from their GP or from acute services.

I want to develop the point about people in work. In a survey that was carried out by the key worker petition UK team, 57 per cent of key worker respondents said that they can no longer work, and 68 per cent said that they are struggling financially. Those are NHS staff who caught Covid at work due to a lack of personal protective equipment and who now face losing their jobs because of their illness. The Scottish Government clapped for them during the pandemic, but it now fails to offer decent funding for treatment and stands by while their employment and source of income look set to be removed.

The Scottish Government should treat long Covid as an industrial injury. I commend Mark Griffin’s member’s bill on creating a statutory employment injuries council, which should include long Covid. Guidance needs to be put in place for employers on supporting people effectively and ensuring that they meet the legal rights of disabled workers. The Government must ensure that it places those with lived experience at the heart of all decision making, nationally and locally, and that they are involved in the design, development, delivery, review and evaluation of services.

I will finish with the words of a nurse from Edinburgh, Cass MacDonald. Cass said:

“Keyworkers with occupational long Covid have literally been left to rot. We are losing pay and our careers are in jeopardy. I’m losing my home because I can’t work and I don’t know if I’ll ever get back to my job. Covid and long Covid are taking everything from me. Career, home, savings—everything. I don’t mind being disabled but this is a shadow of a life.

I am not well enough to renew my nursing registration this year. My career is over. I often feel like I’m being punished by government and healthcare, for neither dying nor getting better. This is a horrible limbo to exist in.

We keep being told there’s all this support, all this money being put into healthcare, but where? There’s nothing in my area. We need action from the Scottish Government, not warm words.”

People with long Covid are not just going to go away. They absolutely deserve support from the Government.

I advise members that there is a lot of interest in speaking in the debate. I am keen to take everybody who has pressed their request-to-speak button, but I ask for some co-operation and for members to stick to their allotted time.

17:23  

I thank Jackie Baillie for bringing this debate to the chamber.

The COVID-19 Recovery Committee, of which I am a member, has been looking at long Covid, and it has heard from a number of sufferers and their families about the extremely challenging time that they have been facing. Our thoughts are with them all today. It is appropriate that we are having this debate, as tomorrow is international long Covid day.

Awareness of long Covid is gradually increasing but, clearly, it is still the case that, among the public as a whole and among GPs and others, some are much more familiar with it than others. I know that those who are directly affected find the rate of progress frustrating, but I think that we are moving in the right direction.

Research is on-going. Last week, the committee heard about the nine on-going Scotland-led studies. I was particularly impressed by the work of Professor Chris Robertson. He and his team at the University of Strathclyde have been studying more than 5 million health records in Scotland, which I had not even realised was possible. Even if a GP has not diagnosed long Covid and coded it as such, the team has been able to trawl through the free text and pick up symptoms and queries in the GP’s notes. Professor Robertson recently published a paper in The Lancet that showed that they found that more cases of long Covid have come from the alpha and delta variants, while fewer are from omicron.

Perhaps we should not be surprised to know that Scotland has a world-class amount and quality of data. However, I accept that we have further to go on sharing that data.

On the wording of the motion, I very much agree that we want more treatments to be available and that there should be more support and clinical research, but I do not agree with Jackie Baillie’s attack on localisation and on making services fit the needs of the local population. She claims that there is a lottery, as though health boards were pulling solutions out of a hat at random. That is insulting to health boards and professionals. Labour has a history of taking a top-down, centralised approach. We need to strongly oppose that. Just because something works in Dumbarton does not mean that it is the right answer in Dundee, Dumfries or Durness.

I am delighted to hear about John Mason’s conversion to localism. Perhaps he will now join my party in opposing the power grab and the asset stripping of local communities in the shape of the national care service.

I think that Alex Cole-Hamilton is in the wrong debate.

The COVID-19 Recovery Committee has not reached any conclusions, and we are due to hear from the cabinet secretary next week, but the subject of long Covid clinics is certainly on our agenda. A number of people feel that the grass is greener across the border and that we should be copying what is being done in England, but the jury is still out on such specialised clinics.

The disadvantages of such an approach could include a shortage of specialist staff and the danger of diverting staff away from other critical parts of the health service. There is also the high cost per patient of those clinics and the risk of conditions other than long Covid being missed. On the other hand, it seems eminently sensible to give patients a single point of contact so that they have one specific person whom they can go to with problems. Evidence from England suggested that those with long Covid still had to go through their GP in the first instance before accessing a long Covid clinic, whereas Wales has a self-referral model, which appears to do well.

I will finish with what I hope we can all agree on. We must continue to focus on long Covid, even as other medical issues come along. ME has been with us for a very long time, and we have not made the progress in understanding it or dealing with it that many of us feel that we should have made. There might not be one magic wand to deal with long Covid or to answer the needs of those who are suffering from it, but we must do all that we can to research it and to support and treat those who are affected by it.

17:27  

I thank my long Covid cross-party group co-convener for bringing the debate to the chamber.

On 1 March 2020, Scotland confirmed its first case of Covid-19 and I wish to pay my respects to the friends and families of the 17,000 Scots who died after contracting this horrible virus, and also to our heroic front-line staff who have treated and looked after patients throughout the pandemic.

Tomorrow is international long Covid day, and we are focused on the rapidly growing number of Scots who survived Covid but are yet to make a recovery. If we cast our minds back to the summer of 2020, just a few months after our first lockdown, it was clear then that we were dealing with a new long-term, chronic and debilitating condition. Month in and month out at my GP surgery, more and more patients were presenting with fatigue, dizziness, brain fog, pain in their joints and poor mental health. The alarm bells were ringing, but the Scottish Government paid scant attention. In the chamber, I underscored the urgent need for action to support long Covid patients. I also proposed a tried and tested solution to establish multispecialty long Covid clinics based on the successful Hertfordshire model.

All that our patients got was a mediocre response from the SNP-Green Government and its current health secretary. In the same month that the Scottish Government produced its long Covid response plan, 79,000 people were suffering from long Covid but, after eight months of dither and delay by the Scottish Government, that figure had risen to 150,000. That is what you get with a continuity candidate—the “First Activist”, if you will—announcements and inertia but very little in the way of delivery.

Today, an estimated 175,000 Scots are struggling with long Covid. The cabinet secretary provided me with a list of initiatives that he is funding this year, to the tune of £3 million, across Scotland’s health boards. That includes the provision of £20,000 for public health intelligence gathering in the Western Isles, £120,000 for self-management resources and peer support in the Highlands, and £178,000 to develop a long Covid rehabilitation pathway in Fife.

However, there is a lack of consistency with that approach. It is not streamlined, and there is a danger of exacerbating the postcode lottery in long Covid support. The Government’s approach is not, as John Mason suggested that it was, one of localism. Chest Heart & Stroke Scotland is calling for a national approach to ensure that all health boards are able to provide multidisciplinary care and integrated referrals to the third sector. No one should be told that they have no access to support, as is happening in some of our communities today.

I appeal to whoever is the new health secretary come the end of the month to listen to the terrific long Covid patient advocates that we have, such as Long Covid Scotland. They know what they are talking about.

Long Covid Scotland is essentially calling for what I proposed in September 2021: the establishment of a network of specialist long Covid treatment hubs. There should be published clear referral pathways. Meaningful, holistic treatment must be available. Diagnostic tests and biomedical investigations should be the norm. There should be better guidance for employers so that they can support their employees effectively. People with lived experience must be at the heart of all decision making, nationally and locally, and they must be involved in the design, development, delivery, review and evaluation of services.

NHS staff are going above and beyond, but they cannot provide the service that patients deserve, because the SNP-Green Government has failed to tackle long Covid head on. Tackling long Covid effectively and with consistency is of vital importance in order for the whole of Scotland to speed its recovery from the coronavirus pandemic.

I declare my interest as a practising NHS doctor who struggles to get his patients into long Covid clinics.

17:31  

I welcome the debate, which marks international long Covid day, and recognise the tireless campaigning work that Jackie Baillie has done for people who are suffering with long Covid.

Long Covid is a devastating disabling disease. We should also be absolutely clear about the fact that, for many thousands of people, it is an industrial disease. Lives and livelihoods have been consumed by the relentless, horrifically common symptoms, which include brain fog, breathlessness, extreme fatigue, constant dizziness and joint pain. Therefore, I welcome the motion and agree that people who are suffering from long Covid should be compensated.

As members might know, the starting point for my proposed member’s bill, which would establish a Scottish advisory council to make sure that we have an employment injuries system that is fit for purpose in 21st century Scotland, was back in 2020, when I asked key workers, academics, unions and ministers whether long Covid should be classified as an industrial disease. The answer back then was an overwhelming yes, and the evidence that we now have means that that case is absolutely undeniable.

Many people caught Covid at work when they were simply doing the job while we were safely isolating at home. The condition has virtually destroyed their ability to return to work. Last week, many of us will have read on the front page of the Daily Record that long Covid has left nurse Brenda Eadie penniless, as she has had to give up her job in Low Moss prison. Brenda’s harrowing story was echoed by that of another nurse, who highlighted that, without a “financial miracle”, she would be unlikely to make it through the year. Front-line workers who put their health and wellbeing on the line for all of us during the pandemic are now suffering devastating circumstances in financial hardship.

You would not know it, but the issue of employment injuries is fully devolved to the Scottish Parliament. A Scottish advisory council could recommend long Covid becoming an industrial disease, but such a council does not yet exist, and we do not know when the relevant benefit will launch.

Although I plan to lodge my member’s bill in a matter of weeks, I am saddened that that will not be soon enough to help the countless workers who are suffering right now. In recent weeks, I have learned of care workers who simply cannot do their jobs any more because they do not have the strength to lift people or to cope with a full day’s work. They are being retired or, worse still, dismissed from their jobs on ill-health grounds for something that they caught at their work.

The fact is that too many people have been ignored by their employers, all while the Government is offering little more than warm words. The Government’s actions have been dismal, and it certainly does not match its rhetoric on supporting disabled people and seeking to give them the dignity, fairness and respect that they deserve. The Government recently told me that it started tracking its own staff absences due to long Covid only in July 2022, which demonstrates that there has been a failure to track people who are suffering from long Covid, as has been raised by other speakers in the debate.

When I first asked the then Cabinet Secretary for Social Security and Older People whether the Government would use its powers to recognise workers with long Covid in its planned employment injuries benefit, the response was appalling. Rather than using the devolved powers that Scotland has, the cabinet secretary said that those people should make a personal independence payment claim to the Department for Work and Pensions. The idea that someone with long Covid should apply to the DWP for PIP, forcing them into a traumatic, cruel process at the hands of an organisation that systematically discounts their illness, is horrifying.

Nearly 200,000 people are suffering from the disease, so it is devastating that only 422 people had made a successful claim by October last year. To make matters worse for the new Scottish benefit, the Scottish Government simply cannot see who with long Covid is getting support under the adult disability payment because, again, it does not track the statistics of people who have the condition. It should not take a member’s bill, but if that is one of the ways in which we can give people with long Covid the dignity, fairness and respect that they deserve, so be it. I look forward to engaging in the debate when I launch my proposed bill.

17:36  

I welcome the sufferers of long Covid who I know are watching the debate online and in the gallery. Many are too ill to leave their homes; we speak in their name. I thank my friend Jackie Baillie for securing the debate and remind the chamber that it is only the second time that the Parliament has debated this debilitating condition. The first was during a debate in my name more than a year ago. I hope very much that the next time we debate it, it will be as normal business in Government time, which would be a signal to everybody who is suffering from long Covid that the Government is finally taking the issue seriously.

I arrive at the debate with a deep sense of anger, which I feel on behalf of the many thousands of people in my constituency and others who are suffering with long Covid. As of today, as we have heard, 175,000 people and more are suffering from it, making it the largest mass disabling event since the end of the first world war. If you listen to their stories, you cannot help but join me in feeling that anger.

At the age of 45, my constituent Will was at the height of a busy and successful career when he caught Covid in March 2020—he is a long hauler. He thought that he had got off lightly but, sadly, he was wrong. Over the three gruelling years since, long Covid has incrementally destroyed both his health and his life. He has been forced to stop work and describes his long list of symptoms as

“a desperate rotation of misery.”

He wrestles daily with cognitive problems, gastrointestinal issues, visual problems, breathing difficulties, crushing fatigue and chest pain. He says that it is a challenge even to eat a bowl of soup as his hands still shake so violently. The Government promised him help and clinical support, but it has not delivered that.

When I ask the Government what it is doing to support people such as Will, it points to primary care. However, he is one of many people who sought help via primary care. He tried numerous GPs, and every time he was told that there was just no clinical pathway for him. That is immeasurably cruel. It would seem that the principal strategy of the Government for sufferers of long Covid is to gaslight them and pretend that help or pathways are available, only for them to find that there is nothing. Thousands of long Covid patients have the same story to tell.

During the COVID-19 Recovery Committee’s long Covid inquiry last week, Dr Janet Scott was asked how she thought Scotland was doing in terms of getting people into a correct treatment pathway. She describes the current situation as being “pretty dreadful”. Good work is being done, and we have heard about some of that from Chest Heart & Stroke Scotland. However, its helpline is still undersubscribed and NHS referrals are low.

Will has now given up waiting for help. He has even paid thousands of pounds for private medical care and knows others who have done the same. However, many cannot afford to access private medical care. So desperate are they to make any sort of progress towards health that people are trying everything. That is a damning indictment of the Government’s failure to help those who are suffering.

There is also insufficient understanding of the paediatric component of long Covid. Some health boards were not even aware of long Covid in children until this year, three years into the pandemic. That is astonishing. The Royal College of Paediatrics and Child Health has said that there is no specific service aimed at children and young people in Scotland. There are tens of thousands of such children and young people. I have met children who went from winning ski competitions to being bound to a wheelchair because of the condition.

The lack even of basic awareness of those young people, not to mention proper treatment, is appalling. The Scottish National Party-Green Government is spending just £17 per head to tackle long Covid in Scotland. That is the price of a takeaway and it is less than a fifth of the money that is available in England and Wales. Sufferers here would be better off moving south. One of the reasons why health boards are reticent about publishing any sort of treatment pathway is that they know that the severe lack of funding means that they do not have the ability to meet the huge need and demand for capacity across the country. How on earth are we here? Three years on from the start of the pandemic and this is where we find ourselves.

The situation is having an impact on our economy as well. Labour market statistics that were released today show that the number of working-age people who are economically inactive due to ill health is the only metric going up. We can bet that a lot of them have long Covid. I support Mark Griffin’s proposal to make it an industrial injury.

People have had enough of the empty platitudes. The Government must immediately increase funding and create and publicise clear treatment pathways. It must ensure that we provide meaningful diagnostics and holistic treatment that is informed by the lived experience of sufferers of long Covid and available to everyone with the condition, no matter who or where they are.

The severe lack of leadership by Humza Yousaf means that it is being left to people with long Covid themselves to fight the battle alone. They are being abandoned and their recovery is being harmed.

17:42  

As many others have done, I thank Jackie Baillie for bringing this important debate to the chamber.

Long Covid occurs after a mild, severe or asymptomatic Covid-19 infection and can cause a wide range of symptoms across the body. It can be a multisystem illness and cause organ damage and cognitive dysfunction, as well as gastrointestinal, respiratory, cardiac, nervous and musculoskeletal problems. It can affect anyone of any age, including children, irrespective of their previous health.

As we mark the first international long Covid awareness day, there are an estimated 175,000 people in Scotland living with the condition. As long as Covid is with us, the potential for more people to develop long Covid is a real and present danger. We should always take opportunities such as this debate to encourage everyone to take the basic infection control measures that can help keep everyone safe. We should continue to make sure that we wash our hands thoroughly and, if somebody is ill, they should try to stay at home.

As we have reopened after lockdowns, many people have gone back to normal. I am sure that many members who are in the chamber and people who are watching the proceedings have witnessed visibly ill people out and about. We know that, for many people, staying home when they are ill is not a reality, especially during the cost of living crisis, and we need to challenge employment practices that are inflexible and potentially put staff in harm’s way. Anything that we can do to reduce transmission will ultimately mean that fewer people will develop long Covid.

I thank all the long Covid groups that have been in touch with briefings ahead of the debate. Every person involved should be proud of the effect that they are having on the direction of long Covid care. I will focus on a few asks of the groups.

Long Covid care and knowledge are likely to develop for many years to come. We need to ensure that we accurately capture data on long Covid. Because many people who contracted long Covid during the first wave of the pandemic lack the positive test, they might not immediately get a diagnosis of long Covid. We need to ensure that the clinical guidance is robust, so that people in those circumstances are given the appropriate diagnosis and that lack of a positive test when they could not have had a test is not a barrier to that diagnosis.

We need to make sure that we know how many people there are and where they live so that services can be planned to support them. Many of those suffering are children and will likely need support for many years. Services need to be able to keep up with that demand.

Because of the high numbers, we might always have struggled to upscale services quickly enough to meet the demand for the number of people who are now experiencing long Covid, but ensuring that those who are experiencing symptoms are able to voice their experience and access the support that they feel they need is imperative.

We also need to ensure that scientific studies are representative of all those who are living with long Covid to ensure that treatments are appropriate for all. Too often in the past, studies have not been representative of, for example, women, ethnic minority groups and those with disabilities or health conditions that may have put them at greater risk of Covid in the first place.

We also need to ensure that general practitioners and other professionals have protected time to update their knowledge as knowledge on Covid updates. There are many conditions, undoubtedly including long Covid, that would benefit from that approach, and a move to electronic prescribing, for example, might free up some time to accommodate it, although there will be many competing priorities for any freed-up time, so some more creative solutions might need to be found.

Campaigners are also asking for proper diagnostic testing and not just rehab. Due to the multisystem nature of Covid, it is possible to have damage to more than one organ or process within the body. Although general rehab may work for some, it makes sense for there to be appropriate diagnostic testing, such as scans, to ensure that the damage is known and is appropriately supported. That could be especially important because we know so little. We have no idea whether symptoms may resolve for some and get worse for others, and if we do not have people’s baseline correctly documented, we cannot hope to make projections or offer advice for anyone who may come after.

I realise that I am out of time, so I would once again like to thank Jackie Baillie for the debate.

17:46  

I congratulate Jackie Baillie on securing this debate.

Last month, I was invited to the long Covid peer support group in Inverclyde. That group meets every Wednesday at Your Voice in Greenock between 1 pm and 3 pm. Anyone who is suffering with the effects of long Covid is welcome to attend a meeting and seek support from others who are dealing with that horrible condition.

What I heard that day will live with me for many years to come. I was genuinely taken aback by the number of symptoms that individuals informed me that they had. Each attendee wrote down their symptoms and provided me with a copy. They were all different. Some experienced a few symptoms and some experienced a lot of symptoms. There were people there who had lost their jobs, and some were struggling to maintain their employment. That relates to the point about guidance. Whether guidance does or does not come, surely, in addition to complying with employment law, every employer has a duty of care to their staff and must try to assist them and keep them in employment.

One of the ladies who lost her job has given me permission to speak about her situation. She was admitted to Inverclyde royal hospital in January 2021. She was initially put on a continuous positive airway pressure machine, but that did not provide the level of intervention that was required, and she was transferred to Glasgow to be put on a ventilator. The same outcome happened in Glasgow, so she was transferred to Aberdeen to be put on an extracorporeal membrane oxygenation machine.

The lady has no recollection of the period from when she went into the IRH in January until she was transferred back to Inverclyde in March 2021. During that time, her mother passed away from Covid. Due to the restrictions, she watched her mother’s funeral on a live stream on her own in a hospital room.

Due to the lasting effects of Covid on that lady’s body, she now struggles daily. She is married with three children, and she worked in a local school. Her family have had to endure the loss of a loved one and the prospect on a number of occasions of losing her. She can no longer work, and her ability to do day-to-day tasks has severely diminished. She is truly suffering physically and mentally from the effects of long Covid.

Her main concern now is to be seen by medical professionals and to feel that she is being listened to and understood. Along with the other attendees at the peer support group meeting, she spoke about not feeling listened to and about being repeatedly given the same tests and thus the same results. She is keen to be involved in any research to look at how we can better understand and treat long Covid.

I put on record how thankful I am to that lady, whom I have chosen not to name, for giving me permission to touch upon some of her story. Her story tells us that, although, in general, the medical effects of long Covid on a person are discussed, long Covid is clearly also linked to the emotional trauma that we all, individually and collectively, went through during the pandemic.

I imagine that long Covid will last for many years to come, as we all learn to live with the effects of an experience that we all hope and pray will never happen again.

The Scottish Government is investing record amounts of money in our national health service. That is more than welcome, and it highlights the Government’s commitment to improving our NHS. However, as we see across the world, health services are struggling.

Preventative spending is vital and is better not only for the individual but for the country and its finances. If we do not do more to help people who are experiencing the effects of long Covid now, intervention will come too late for some, and much more finance and resource might be used in an ineffective way further down the line.

That said, I very much welcome the fact that the Scottish Government is investing in long Covid research. The chief scientist office is funding nine Scotland-led studies, totalling £2.5 million, that aim to improve understanding of the long-term effects of Covid-19 on physical and mental wellbeing. The projects are progressing; they are at about the mid-point stage of their 22 to 24-month duration.

I welcome the work that is under way in Scotland to support and improve the lives of those who are struggling with the effects of long Covid. However, from the conversations that I have had with those who are living with the condition and the additional conversations that I will, no doubt, have, I know that more can and must be done.

Before I call the next speaker, I advise members that, due to the number of members who still wish to speak in the debate, I am minded to accept a motion without notice, under rule 8.14.3 of standing orders, to extend the debate by up to 30 minutes. I invite Jackie Baillie to move the motion.

Motion moved,

That, under Rule 8.14.3, the debate be extended by up to 30 minutes.—[Jackie Baillie]

Motion agreed to.

17:51  

I thank Jackie Baillie for bringing the motion to the chamber ahead of international long Covid day, which will take place tomorrow, 15 March.

For far too long, long Covid has not been viewed with the significance that it should be. In the past, the perception has sometimes been that Covid can be a debilitating disease for up to several weeks, but we know that many people have suffered continually from the condition.

Every time that long Covid is raised in the Parliament, we hear of even higher statistics that highlight how many Scots are currently suffering from the condition. Indeed, Jackie Baillie’s motion mentions the estimated 187,000 people living with long Covid in Scotland. We all know that Covid has not gone away, so the issue will continue, and that number will continue to rise.

We have seen that long Covid can take different forms in different people. The condition affects different organs and different systems, so many different parts of someone’s life can be affected.

The nature of the condition means that long Covid is inevitably more difficult to diagnose and even more difficult to define. Symptoms that individuals suffer from include chronic fatigue, painful joints, dizziness and decreasing mental health. The issue of decreasing mental health is particularly acute. Long Covid sufferers might find life much more stressful, and they might have much more anxiety. In some cases, they suffer from post-traumatic stress disorder. There are also countless examples of fit, young and healthy individuals who have found themselves no longer able to live normal lives for months—or even years—after getting Covid.

As part of international long Covid day, people with the condition have been encouraged to share an image of something that they can no longer do because of long Covid. That is perhaps one of the best ways to demonstrate how the condition reaches into every corner of people’s lives.

Today’s debate provides an opportunity to reflect on what is undoubtedly one of the pandemic’s worst legacies. It should also provide an opportunity to reflect on how we tackle the issue.

For the past 18 months, my colleague Dr Sandesh Gulhane has been raising the plight of long Covid sufferers and highlighting the need for dedicated long Covid clinics to be established. Despite promises of additional funding, we have not seen those clinics materialise. Dr Gulhane has pointed out that long Covid was always going to be an issue that needed to be dealt with. There were always going to be consequences, and those consequences are still here. Despite now being nearly three years down the line, we are still waiting for dedicated, specialist services. That is a crying shame for people who are suffering on a day-to-day basis.

Action must be taken; it is long overdue. The voices of people who are suffering should and must be heard. With initiatives such as international long Covid day now becoming recognised, I am at least hopeful that we will not have to wait too long for further action. The Government must act now to provide assistance and support for people with long Covid so that they are respected and looked after.

17:55  

I thank my colleague Jackie Baillie for bringing this important issue to the chamber.

Long Covid is not simply a long recovery time from Covid-19, nor is it an occasional feeling of fatigue or sickness following a Covid-19 infection. That is a common misunderstanding. Long Covid is a complex, multisystem, neuroimmune illness that currently has no known cure. A recent ONS survey showed that an estimated 2.3 million people in the UK suffer from long Covid. A recent BBC “Panorama” documentary estimated that nearly 10,000 NHS workers are currently absent because of long Covid.

One of my constituents, Marie-Claire, is an NHS doctor in Edinburgh. Marie-Claire told me that the overwhelming response from colleagues was that they often had little understanding of the severity or specifics of the illness. Marie-Claire also suffers from long Covid. There is a growing stigma about long Covid within the medical community and wider society. She told me that patients are having to educate their medical professionals on this debilitating illness in order to get help.

Another of my constituents, Cass Macdonald, was a full-time NHS nurse who contracted Covid-19 while working in an out-of-office nursing role in Edinburgh. Despite having multiple underlying health conditions and being told to shield according to the Scottish Government’s advice, the same Government still advised that it was safe for NHS staff to come to work. Cass has been living with long Covid ever since and is unable to go back to full-time work.

Since Covid special leave has ended, Cass is now on standard sick pay, which has been halved this month and will be stopped altogether in September. Cass has also been told that, due to their financial circumstances, their only option is to declare themselves bankrupt or sell their home. A recent survey by key workers petition UK showed that Cass is part of the 20 per cent of key workers in the UK with long Covid who said that they were at risk of losing their home due to financial circumstances.

Like many others, Cass has experienced frustration within the health service due to lack of awareness surrounding the health impacts of long Covid. Tomorrow, Cass and other key workers will deliver a petition in London urging the UK Government to create a pension and compensation scheme for all key workers who have developed long Covid as a result of their front-line work during the pandemic. The petition already has more than 118,000 backers.

The Scottish Government must be part of the process to help stop the stigma around long Covid. It must do more to ensure adequate support for key workers who are desperately struggling due to long Covid. It must do more to increase public awareness of the danger of long Covid and to help people such as Cass and Marie-Claire and the thousands of others suffering from long Covid across Scotland.

I again thank my colleague Jackie Baillie for bringing the debate to the chamber.

17:59  

I also thank Jackie Baillie for bringing the debate to the chamber.

We have heard more and more from Covid-19 survivors that the impact of the virus lasts beyond the first few weeks of immediate symptoms.

As members have said, for some patients, Covid-19 has a long-term and far-reaching impact on their daily lives, impacting them physically, emotionally and cognitively. Post-Covid syndrome, which is now referred to as long Covid, presents a variety of symptoms. They range from physical symptoms such as pulmonary and cardiovascular symptoms as well as systemic issues such as extreme fatigue, to neuropsychological symptoms that impact cognition, speech, memory and emotion.

Members have described the condition already. As I am one of the final speakers in the debate, it is hard to come up with or reflect something different. However, I am interested in following up on the point that the varied symptoms demonstrate that long Covid is complex, and much is still not known about how Covid-19 will affect people over time.

Research is on-going and must be supported. Stuart McMillan mentioned research that is being undertaken. I have information on research from the Covid in Scotland study, which involved a large cohort of people. The study involved 33,281 cases of laboratory-confirmed SARS-CoV-2 infection as well as 62,957 individuals who had never been infected. The study looked at a wide range of people who have had Covid and some who have not had it. The results are interesting, although I will not repeat all the information that I have in front of me.

It is crucial that we think about the real-life experiences of people living with long Covid and that we involve those people. We need to continue to use that experience to inform the Scottish Government’s approach to support, and we need to look at where support is most required.

I have read about the work that Chest Heart & Stroke Scotland is doing with NHS Lothian, Pogo Digital Healthcare and patients with long Covid to develop a pathway for long Covid. The pathway aims to give patients access to the tailored talks digital platform and to get advice from Chest Heart & Stroke Scotland’s long Covid support service. The work involves engaging with people to hear about their symptoms. People self-assess their symptoms, which allows them to be directed to particular specialists—as we have heard, different specialists deal with different symptoms.

It is interesting to pick up on what the Office for National Statistics has said about the prevalence of long Covid. In social care, 85 per cent of the workforce are female; in education, 60 per cent of the workforce are female; and in healthcare, the figure is 76 per cent. Therefore, long Covid impacts women more in those areas. Obviously, the condition presents challenges for women’s participation in the labour market, particularly as employer responses to long Covid have perhaps not been particularly supportive of women in the workforce. In a Trades Union Congress study, 52 per cent of respondents in the female workforce said that they had experienced some type of discrimination or disadvantage due to long Covid.

I am interested in whether the minister is pursuing any specific long Covid pathways into treatment for women and whether any further analysis could be done to look at the gender impact.

I will stop there, although this is a wide-ranging subject and I could easily have gone on for longer.

18:03  

I thank Jackie Baillie for bringing the debate to the chamber and allowing us to discuss the issue. I am a member of the COVID-19 Recovery Committee, which is investigating long Covid and the Scottish Government’s approach to it. We have taken evidence from many long Covid sufferers and, for sure, it can be a crippling condition. It can severely restrict a person’s ability to work or even to take part in what we would class as everyday activities. It can be extremely debilitating. As has been highlighted, the problem is that, for many people in employment, the condition is not taken seriously. When people have to continually be absent from work, that impacts on their ability to do their work and potentially endangers their employment.

The problem is that there are multiple symptoms of long Covid. There can be recurring chest pain, brain fog, abdominal pain, extreme fatigue and neurological symptoms. If a person is suffering from recurring chest pain or recurring abdominal pain or any of those other symptoms, you had better believe that they want to get that seen to, because of course it is extremely worrying. They need to see a GP. We know that the NHS is under extreme pressure and that access to GPs is not all that it could potentially be in certain areas. Even if a person gets to see a GP, there are GPs who do not accept that long Covid is a condition. Even when a GP accepts that it is a condition, they have no place to signpost the person to. As has been said before, many people have ended up having to pay for private healthcare to get a diagnosis or even treatment, and, of course, that is leading to significant inequality, which we know already exists.

Interestingly, we heard in evidence from Chest Heart & Stroke Scotland that it is treating long Covid and that it has capacity, but people are not getting referred to the organisation because GPs do not recognise or realise that Chest Heart & Stroke Scotland is a potential destination.

My assertion is around the need to develop the health information technology system to not only accumulate the data from research—for which Scotland has an excellent reputation—but to deploy it in an effective way, which we are not particularly good at. Covid has highlighted a problem that we already had to deal with: our collection of data, our deployment of data, the ability of that data to cross NHS borders, and our ability to share data and good business practice.

Brian Whittle and I were on the Health and Sport Committee together in the previous parliamentary session. Data and data sharing were a big issue. Does he think that the work that Chest Heart & Stroke Scotland is doing needs to be connected directly with, for instance, the data platforms for learning for GP practices or GPs?

Emma Harper is absolutely right. Having been on that committee with me, she knows that the ability to collect and share data is an issue that has recurred for me over and over.

One issue that we always seem to see with a lot of conditions—multiple sclerosis was another one—is the need to be able to share information with GPs. I think that, because GPs are under extreme pressure, their ability to do consistent development is curtailed, and we need to generally look at how we allow our GPs to access that learning. I think that Emma Harper is absolutely right.

As I come to a close, I will say that long Covid clinics, which are not available in Scotland but are available elsewhere in the UK, are not only diagnostic and treatment centres but are the hubs for collecting data. Long Covid is real, and we are behind the curve in Scotland.

I finish by thanking Jackie Baillie once again for bringing this debate to the chamber. It is our business to raise the issue again.

18:08  

I thank my colleague Jackie Baillie for her on-going work on long Covid and for bringing this debate an international long Covid day to the chamber. I thank colleagues from across the chamber for their contributions, but in particular I want to mention the importance of my colleague Mark Griffin’s bill.

As we have heard, long Covid is, and will continue to be, one of the most challenging outcomes of the pandemic. It is a condition that debilitates, lacks a cure and lacks research and, sadly, it is one about which people still lack awareness. It is absolutely right that we mark international long Covid day—which, as we have heard, is tomorrow—and renew our commitment to all those in Scotland who are suffering as a result of the long-term impacts of the virus.

In the debate, yet again, colleagues across the chamber have warned the Scottish Government about the threat that long Covid poses. People suffering with long Covid have spoken to us as MSPs directly to highlight their concerns, and we have heard from members during discussions in the chamber and at other times in the Scottish Parliament. However, I am not surprised that their demands and requests have been met with insufficient actions. That is part of the reason why we keep trying to bring the issue to the chamber.

As members will know, I often raise issues on health inequalities. I feel that Jackie Baillie is right to note in her motion the importance of not creating such inequalities in patient outcomes. Last month, the Scottish Parliament information centre released research that highlights that

“As a proportion of the UK population, the prevalence of self-reported long COVID was greatest in ... people living in more deprived areas, those working in social care, those aged 16 years and over who were not working and not looking for work, and those with another activity-limiting health condition or disability.”

We are still behind on research, and the impacts of long Covid will become clearer as we progress. However, the Scottish Government has totally taken its eye off the ball on health inequalities, so it is absolutely critical that we are alert to what could be yet further such inequalities that will impact Scots from deprived areas.

Before I conclude, I am keen to pay tribute to the health and activity rehabilitation programme team that works as part of the health and social care partnerships in Ayrshire’s three local authority areas. On Friday, I was delighted to pay a visit to its base at the Lister centre in Kilmarnock to learn about the long Covid services that it will provide in the coming months to people living with the condition in the NHS Ayrshire and Arran area.

Early on in the pandemic, the team identified the need to support its staff, which it did through an occupational health model. That has given the team a real advantage in recommending its service to lead on long Covid in Ayrshire. From my visit, it seems to me that clinical leadership and a respect for a multidisciplinary approach are key to the team’s achieving its outcomes. It has an equal approach across allied health professions, nurses, volunteers and support staff, and it does fantastic work in the community. I have no doubt that its long Covid provision can and will be a success.

As parliamentarians, we owe it to the staff of such services to ensure that funding is available and is uplifted whenever possible. I hope that the minister will address the funding issues that members from across the chamber have raised. As people look for support to help them to deal with breathlessness, fatigue, tiredness and other symptoms, we must be in a position to offer it.

I call Fulton MacGregor, who will be the final speaker before I ask the minister to respond to the debate.

18:12  

This week marks the anniversary of the point when we began to fully understand the scale at which the Covid pandemic would affect our lives. In the years since, we have seen rapid scientific breakthroughs, communities pulling together and a fundamental shift in the way that we live our lives. I want to put on record my welcome for the work of the COVID-19 Recovery Committee on a range of issues relating to the pandemic, including the issue of long Covid.

We are still trying to fully understand the condition. However, as other members have said, generally speaking, we can describe long Covid as being where an individual takes months to recover—if they recover at all—from Covid symptoms and suffers from persistent issues such as fatigue, high temperatures, breathlessness, cognitive impairment, generalised pain and mental health problems, to name but a few.

Like other members, I have been contacted by many constituents whose lives have been significantly affected by their struggles with long Covid. One constituent, who is only 27 years old, has been off work for two years and suffers constant pain every day. Although doctors have told him that he is suffering from long Covid, he is still waiting for further diagnostic tests with the NHS and is having trouble accessing the necessary benefits and supports as he awaits those. He tells me that he recently reached an agreement with his employers to allow him to return to work, which is promising. However, as other members have suggested, perhaps not all employers will be as understanding or as informed about long Covid as that local firm.

Another constituent was only 14 when he contracted Covid during the first wave of the pandemic. He is now 17 years old and has withdrawn from school and his social network, and his dreams of learning to drive and attend university have been put on hold indefinitely.

Doctors have diagnosed him with long Covid and now believe that he suffers from severe chronic fatigue syndrome. His mother, Tracy McMullen, has expressed her appreciation for the GPs and healthcare professionals who have helped her son up to now, but also her frustration that clinical support for cases such as her son’s is nearly non-existent. I have raised the situation of Mrs McMullen and her son previously in the chamber, and I know that she has given evidence to the COVID-19 Recovery Committee and made a submission to the inquiry.

Of course, that is not to say that the Scottish Government has been inactive in this area, as some of the commentary in tonight’s debate has suggested. In September 2021, the Scottish Government set up the long Covid service, which uses an evidence-based approach to provide supported self-management, primary care, community-based support, rehabilitation and secondary care services, if necessary, to people with long Covid. The initiative was financed by the £10 million long Covid support package that was given to health boards to help them to respond to the situation.

My local health board, NHS Lanarkshire, uses a long Covid rehabilitation pathway, which offers dieticians, occupational therapists, physiotherapists, psychological practitioners and speech and language therapists, among others, to people who are referred on to the pathway by their GPs.

I think that we all welcome the £10 million that the Scottish Government is providing, but that money is being provided over three years, and it is not the £21.7 million that the Scottish Government has received in Barnett consequentials. Does Fulton MacGregor agree that it would be helpful for the Government to put all of that money into the system to help long Covid sufferers?

We are still trying to understand long Covid. We should welcome the money that has been invested, but it is likely that more will need to be done. I will go on to develop that point.

I mentioned the situation in NHS Lanarkshire. I am due to meet members of its rehabilitation team soon to hear more about their work. I have heard very good things about the work that they are doing. NHS Lanarkshire has published on its website a long Covid self-management workbook, which offers individuals ways of alleviating symptoms and lists a number of other supports that are available, if required.

Three years on, we know that long Covid exists, and we know that it can be debilitating; in fact, some people have said that it is the pandemic after the pandemic. We know that people who suffer from it experience a wide range of symptoms. Local health boards have protocols in place to provide some aid, but much greater investment is needed to provide support in cases such as those of the constituents I mentioned earlier. As well as providing health assistance, we must ensure that the social security network does not allow anyone who is suffering from long Covid to slip through.

I invite Maree Todd to respond to the debate. You have around seven minutes, minister.

18:17  

I am very pleased to respond to the debate on behalf of the Government. I hope to respond to many of the points that have been raised, to set out the Scottish context and, of course, to reiterate our commitment to supporting people with long Covid.

Tomorrow’s international long Covid day gives us an important opportunity to reflect on the impact that Covid-19 has had and continues to have on those adults and children who experience persisting symptoms. Those symptoms can vary considerably in their presentation and impact from person to person, and they can have significant effects across many areas of life. I pay tribute to our dedicated health and social care and third sector staff across Scotland, who have been working tirelessly since the beginning of the pandemic to support people with long Covid.

Unfortunately, as many members have mentioned, at present there are no broadly effective treatments for long Covid. The approach that is recommended in clinical guidance is to provide treatment, where possible, for specific symptoms or support to help people to manage them. In Scotland, that is being supported through local primary care teams, which conduct tests to investigate symptoms and provide direct support or access to other services. Those services might include third sector, community rehabilitation or mental health services and, for a smaller proportion of patients, further investigation of specific complications, which will be delivered in a specific specialty clinic or hospital setting.

That is what it says on the tin—that is what the Government has said for the best part of 18 months—but it is not what is happening in real life. I said in my speech that the Government is gaslighting victims and sufferers of long Covid by suggesting that there are treatment pathways when those pathways just do not exist. What does the minister have to say to them?

I find it quite insulting that Alex Cole-Hamilton has used that term in the chamber. There is no intention to gaslight patients. However, from listening to people who have been impacted by long Covid, it is very clear that healthcare support and services have not always met people’s expectations.

We also know that finding the right support can be particularly challenging when people have multiple symptoms or complex presentation. That is why this Government has established the £10 million long Covid support fund, which aims to increase the capacity of existing services and support those with long Covid. It aims to develop those into more clearly defined local pathways and to provide a more co-ordinated experience for those accessing support.

I am grateful to the minister for giving way. Research from SPICe has identified that £21.7 million in Barnett consequentials has come to the Scottish Government as a result of NHS England treatment for long Covid. Where has that money gone?

I am sure that Jackie Baillie is aware that we spend more per head of population on health than any other UK Government. We have more GPs per head of population. Spending in Scotland is 10.6 per cent higher than in England.

I put to Jackie Baillie, and to others who raised the point about services being better in England, the written response of the Royal College of General Practitioners Scotland to the COVID-19 Recovery Committee’s inquiry on long Covid. It stated:

“We note that the English clinics have been hugely expensive for the number of patients treated and that most treatment involves rehabilitation and symptomatic care.”

Therefore, it does not differ significantly from what is on offer in Scotland, other than that it is significantly more expensive.

We have made—[Interruption.]. Give me one moment to proceed. We have made an initial £3 million available to NHS boards and partners over this financial year, and a further £3 million will be allocated over 2023-24.

I would presume that all members in the chamber will be familiar with the clinical guideline; certainly, I would presume that Dr Sandesh Gulhane is already familiar with evidence-based guidelines. The clinical guideline produced by SIGN, NICE and the RCGP notes that one model for long Covid service organisation would not fit all areas. That is why we are supporting NHS boards to develop those tailored models of care, delivered by teams with knowledge and expertise of their local populations.

For example, as mentioned by my colleague Fulton MacGregor, between May 2022 and January of this year, NHS Lanarkshire’s long Covid rehabilitation pathway has directed more than 580 referrals. That pathway delivers a single point of access for assessment and co-ordinated support from services, including physiotherapy, occupational therapy, psychology, dietetics and speech and language therapy, depending on what is most appropriate for a person’s needs.

NHS Highland, which covers the area where I live, spans the largest geographical area of all Scottish health boards, covering 41 per cent of the country’s land mass. It has developed a long Covid pathway delivered by a virtual team—quite rightly so. It includes occupational therapy and physiotherapy staffing to support assessment, rehabilitation and co-ordination. That pathway has had approximately 100 referrals since going live in September 2022.

I am grateful to the minister for giving way. Perhaps she would reflect on the fact that Ayrshire and Arran does not have any pathway for anybody with long Covid, except for those who work in the health board.

Brian Whittle will be delighted to hear that six health boards have long Covid pathways up and running. NHS Greater Glasgow and Clyde, and NHS Ayrshire and Arran, have indicated that their pathways are expected to open later this month. Elsewhere, other boards are working extremely hard to conclude recruitment processes and to have defined long Covid pathways in operation as soon as possible. We have established a national strategic network to ensure that initiatives delivered by boards are robustly evaluated, helping to spread best practice and learning as quickly and effectively as possible.

There is still a great deal to be learned regarding long Covid, which is why we are contributing to the worldwide research effort to better understand the condition. Our chief scientist office is funding nine research projects investigating the longer-term effects of Covid, totalling £2.5 million. Initial findings from a number of them have been published in peer-reviewed scientific journals.

More broadly, our CSO research funding schemes are open. Let me be absolutely clear that applications on long Covid are welcomed.

Ventilation was mentioned earlier in the debate, and we know that it can make an important contribution to reducing the risk of transmission. Expert advice from bodies including SAGE and the Health and Safety Executive indicates that air cleaning and filtration devices—such as HEPA filters—are not a substitute for efforts to improve ventilation in order to mitigate the risks of Covid. We are taking forward the recommendations of our ventilation short-life working group, which aims to raise awareness of the importance of ventilation, increase technical skills and improve air quality in buildings.

It would be remiss of me not to recognise the work of the COVID-19 Recovery Committee, including the work that it is currently undertaking, and the wealth of information that it has amassed from academics, healthcare practitioners and, most important, people with lived experience of the condition.

This is a brand new condition, and yet we have already done a great deal in Scotland. We have issued national guidance, supported research into the condition, established a fund to support the development of services and set up a national strategic network to ensure learning between NHS boards and the sharing of evidence on long Covid. I recognise that that will be no comfort to individuals who are suffering and who are finding it hard to navigate care, but it is important to note that we are dealing with a condition that we are still learning about, and that all that has been done within the context of an NHS under immense pressure as a result of the pandemic.

I will correct one final thing before I close; I find myself obliged to correct just one of Alex Cole-Hamilton’s inaccuracies. This is, in fact, the third time that this Parliament has debated long Covid. The last time that we debated it was in May last year, in Government time.

The Government remains committed to drawing upon the best available insight and evidence to inform our evolving approach to supporting people with long Covid. We look forward to engaging with the Parliament on the issue.

Meeting closed at 18:27.