Meeting of the Parliament [Draft]

Meeting date: Wednesday, March 13, 2024

Official Report 1124KB pdf

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International Long Covid Awareness Day

The final item of business is a members’ business debate on motion S6M-12371, in the name of Sandesh Gulhane, on international long Covid awareness day 2024. The debate will be concluded without any question being put.

Motion debated,

That the Parliament recognises that 15 March 2024 is International Long Covid Awareness Day; understands that it is estimated that around 187,000 people have long COVID in Scotland, an estimated 10,000 of which are children; notes that long COVID can cause a myriad of debilitating and often life-altering symptoms; considers that a lack of awareness of long COVID exists among the public, employers, medical professionals and policy makers, and that there is often a stigma that negatively affects the mental health and wellbeing of people with long COVID; notes the view that current Scottish Government funding for initiatives does not go far enough in addressing any need for more effective treatment services and support for people with long COVID; further notes, with regret, the view that there has been a lack of progress in addressing consistency of access to diagnosis and treatment services, that there is a continuing postcode lottery for long COVID support, and that there remains little data for monitoring the current prevalence of long COVID in Scotland to inform the scale of required care; notes the belief that there is a need for clear referral pathways across all NHS boards, including access to multidisciplinary teams of specialists; highlights, with particular concern, reports that there are no specific services aimed at children or young people with long COVID in Scotland, and notes the calls for the Scottish Government to fully implement, without delay, the recommendations in the COVID-19 Recovery Committee report, Long COVID.

17:29  

I draw members’ attention to my entry in the register of members’ interests. I am a practising national health service general practitioner.

I thank all members of the cross-party group on long Covid—especially my co-conveners, Alex Cole-Hamilton and Jackie Baillie—for their much-valued work over the past two and a half years.

On 1 March 2020, Scotland’s first case of Covid-19 was confirmed. I pay my respects to the friends and families of the more than 17,600 Scots who have died after contracting that horrible virus.

Today, to commemorate international long Covid awareness day, we are focused on addressing the Scottish Government’s failure to adequately support the more than 187,000 Scots who have survived Covid but are yet to fully recover. Ten thousand of those 187,000 Scots are children. Some patients and their families have joined us in the gallery today. Coming here will be a sacrifice for people for the rest of the week, as they have used up all their energy this week to come here to protest and provide support. They do not want to hear platitudes.

Earlier this afternoon, I hosted a drop-in session in the Parliament for Long Covid Scotland. Patients and families told us that they are weary and tired of having to fight for help. A lot of them were angry. They feel that their pleas have fallen on deaf ears. They have spent three years being fobbed off. They have heard the announcement and promise of cash, but they continue to suffer physical and emotional pain and distress, and they struggle to access specialist support and rehabilitation services. Many are economically devastated by the condition. They include nurses and paramedics, some of whom I met today. They were infected at work and are now unable to work.

In our long Covid debate in March last year, we highlighted a lack of consistency in the Scottish National Party Government’s approach to supporting long Covid patients. Its approach is piecemeal and not streamlined. Patients truly feel abandoned by the Government and by the resulting inconsistent care and lack of co-ordination, with no national approach.

As for children, the Long Covid Kids charity tells us that there are still no spaces for young people and that there is no single point of contact, as promised. We understand from Chest Heart & Stroke Scotland that 82 per cent of long Covid sufferers have encountered difficulties accessing services, that 43 per cent were not referred to rehab services and that there is a lack of overall information on self-management of their condition. Seventy-one per cent of long Covid patients who were surveyed said that their mental health had deteriorated, and 40 per cent said that long Covid had affected their ability to work and earn a living. We know that many struggle to access social security payments.

For those fortunate not to be impacted by long Covid, I will briefly describe some of the symptoms that patients live with. Those include severe fatigue, dizziness, brain fog, pains in their joints, poor mental health, slurred speech, indescribable headaches, fluctuating heart rates, numbness and gastrointestinal issues. Long Covid is a very complex condition, which is why our response must be shaped by best clinical practice, not by managers or bean counters. Continuing to pass patients between services and departments like batons, with no one taking responsibility, will not wash for our visitors in the gallery. They have had enough.

I am particularly upset by the Scottish Government’s poor response because, when we saw the problem unfolding, we could have shared solutions. Long Covid was the focus of my maiden speech in the Parliament on 27 May 2021. By June, I had authored a long Covid paper—a proposed action plan to invest in a network of specialist clinics, including virtual clinics and app-based treatment services, and provide ring-fenced funding for long Covid care and research. We wanted to get the very best from across the United Kingdom and bring it here. We needed clear rehab pathways, including multidisciplinary teams with GPs, physios and occupational therapists.

On 9 September 2021, the health secretary at the time, Humza Yousaf, announced £10 million for long Covid. The response to a freedom of information request has shown that, instead of the funding covering three years, it is now covering four years. Over a year after that, on 14 March 2023—members will recall that the political landscape had shifted and the health secretary, Humza Yousaf, was about to become First Minister—175,000 Scots were struggling with long Covid. We were informed that that funding had provided £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 rehab pathway in Fife.

However, a total of just £1.1 million was spent by health boards and organisations from the fund during 2022-23. That included awards of £144,000 to Covid Aid, an online support group that was closed down a year later. Only NHS Lanarkshire received more long Covid money for treating patients in 2022 than that website.

During the 2023-24 financial year, more than £2.7 million was allocated, including £600,000 to NHS Greater Glasgow and Clyde and £370,000 to NHS Lothian. However, what matters is not the money but the action and outcomes, because patients are not spreadsheets. From what we heard today, patients do not feel as though they are getting the access to rehab, people and treatment that they believe they should, and deserve to, get.

We know that long Covid is complex and that research is on-going, but the most important thing that we can do is listen to people who have long Covid, who are suffering and struggling, involve them and get them into our treatment centres to give them the support that they deserve.

17:36  

I thank our colleague Sandesh Gulhane for bringing today’s debate to the chamber. I apologise for not meeting people earlier today, as I was out of Parliament on a long-established visit to speak at a university. However, I have listened to what has been said.

This is an important issue because, as the motion states, it is estimated that 187,000 people in Scotland have long Covid and that 10,000 of them are children. I agree with Sandesh Gulhane that there is not enough awareness of the debilitating effects of long Covid and the huge number of people who are suffering from its effects. In that vein, I hope that the international day of long Covid awareness, as well as today’s debate, will better inform people in general and provide focus for those who are investigating and seeking to develop treatments for the illness.

On the level of Government involvement, when attempting to evaluate any progress or when levelling any perceived criticisms, it is essential to recognise that long Covid was born out of an unprecedented global pandemic and was discovered only in the past couple of years. I will leave the minister to talk about how it is being addressed by the Government.

I say that not to detract from the seriousness of the issue that we are debating today or the suffering of so many people with long Covid, but simply in the hope that, when we debate the issue, we recognise the fact that, as with any new diagnosis, it will possibly take some time to develop and deliver treatments, which we need to do as soon as we can.

I agree that, in Scotland, we need to do everything that we can to understand and treat long Covid, but we must also make more of an effort to look at the issue as a continuation of the pandemic. There needs to be a co-ordinated response to the issue. When Covid-19 struck and the world reeled from its effects, we came together to identify, understand and develop a vaccine against the virus and then to roll out vaccination programmes on a global level. We need to approach long Covid in the same way. Although we know that more than 180,000 people in Scotland are estimated to suffer from the disease and illness, the global figure is, by conservative estimates, more than 65 million, although it is probably a great deal more.

Long Covid is a global issue that needs a global response, and I hope that Scotland can be at the heart of it. The 2023 demystifying long Covid international conference took place in December in Madrid. Would Scotland, the Scottish Government or, indeed, our Parliament consider staging such an event to bring together experts here and globally to better understand the issue and to work together to develop effective treatments?

Scottish universities have a global reputation for excellence, and their work with medical science companies is second to none. Putting Scotland at the heart of global efforts to carry out research and develop effective treatments for long Covid would have numerous benefits, including, first and foremost, helping those who are suffering. It would also benefit our education and pharma sectors by attracting global funding, which, ultimately, could help to fund a number of the actions that are called for in today’s motion. I therefore want Scotland to take a lead in research and development and to make that happen. I am keen to hear from the minister on the obvious and potential benefits of placing Scotland front and centre.

Every day, we learn more. Only today, it was reported that studies have shown that active Covid antigens were found in the blood of long Covid sufferers up to 14 months after infection, and for more than two years in tissue samples. That has the potential to revolutionise how we treat this disgusting disease. We must put Scotland at the centre of that revolution.

17:40  

I join others in congratulating Sandesh Gulhane on securing the debate and on the considered view that he offered to the chamber. I say to Bill Kidd that I do not disagree with very much that was in his speech. I also thank Long Covid Scotland and Long Covid Kids Scotland for the work that they do all year round to advocate on behalf of those who live with long Covid, and I acknowledge their presence in the public gallery.

This is the third time that we have debated long Covid in the Scottish Parliament, and it is a matter of considerable regret that very little has changed since the first time, other than that we are now on our third cabinet secretary. No new funding, research or treatments have been offered, and the Scottish Government has even stopped gathering regular and frequent data on how many people are affected; disappointingly, it has never been interested in gathering data on prevalence among children.

The result is that we are in the dark, effectively, about how many people truly live with long Covid. Estimates are in the region of 187,000 adults. Although we might not know the exact numbers, we know that each reinfection of Covid-19 increases the chance of long Covid, and that around one in 10 Covid infections leads to long-term symptoms.

No one is immune to the risk—yet vaccination, which is acknowledged as the best form of protection, is now restricted to those over 75 and people who are immunosuppressed. Long Covid will not just go away, and the Government cannot pretend that it is not a big deal, as it appears to do with similar illnesses such as ME/chronic fatigue syndrome. The truth is that, due to the paltry level of support from the Scottish Government, the NHS is failing to adequately support Scotland’s long Covid population.

A report that was published last week by Chest Heart & Stroke Scotland, which was referenced by Sandesh Gulhane, found that 72 per cent of people with long Covid

“said there was support they needed but weren’t able to access”;

82 per cent

“encountered some kind of difficulty in accessing services, with some struggling to access any medical support”;

and 38 per cent said that

“their doctor wasn’t able to provide guidance on available support.”

That is not good enough.

The long Covid support fund, which was £10 million over three years, is now entering its final year, although I hear that it may be stretched over four years. Perhaps the minister will clarify that. Single-year funding has led to underspends and difficulties in recruiting staff. Any board that wants to run a specific long Covid clinic has been told no—and, frankly, £12.88 per person is simply not enough. What has happened to the £27 million in Barnett consequentials for long Covid that is estimated to have come from the UK Government?

Properly funding long Covid treatment is not just a medical necessity but an economic necessity. A report that was written by the European Commission in January this year found that

“Long COVID symptoms”

hugely

“affect individuals’ capacity to participate in the labour market”.

The Chest Heart & Stroke Scotland survey confirms that, indicating that 40 per cent of people who live with long Covid are unable to work at all, due to their condition. That equates to as many as 72,000 Scots exiting the labour market since 2020.

Put simply, the SNP Government is failing those with long Covid—warm words will not cut it any more. The Scottish Government must take the crisis in hand; properly fund long Covid services; ensure accurate data collection; and implement the recommendations from the COVID-19 Recovery Committee’s “Long COVID” report as a matter of urgency. It must also commit to improving public health messaging on long Covid; fund new co-produced research with lived experience at its heart; and ensure equitable access to co-produced health and social care services with the specialist multidisciplinary teams that are required.

It is time to properly treat and fund long Covid once and for all. I sincerely hope that the minister and the cabinet secretary are listening, because long Covid sufferers will not go away quietly—no matter how much the Government may want them to do so—and, frankly, they cannot wait any longer. I ask the Government to act.

17:45  

I thank my friend and colleague, Sandesh Gulhane, for bringing the debate to the chamber. Having looked back at my time on the COVID-19 Recovery Committee when we did an investigation into long Covid, and having listened to some of the sufferers we spoke to outside Parliament today, it is disquieting that some of the same things are being said several years later and that we do not seem to have made any progress at all.

It struck me that many of those who are suffering from long Covid are the essential workers—healthcare workers, teachers and the police—on whom we relied during the Covid pandemic. Many of those people are unable to work or are losing their jobs. We know that 187,000 people are now estimated to be suffering from long Covid. The debate that we have just had on how we want to move our economy forward touched on the issue of those who are economically inactive; surely, that issue is a reason for us to take long Covid a lot more seriously than we currently do.

At the time when we had the long Covid inquiry—I am going back by about three years—it was said that the condition was not being recognised by the health profession. People did not know where to go to seek advice about the condition, and there was only one long Covid nurse in the whole of Scotland. Yet, here we are again, all this time later, hearing the same thing. We have not moved on, which is disappointing. We need the provision of specialist treatment. We need to gather the data and understand the research—not just in Scotland, but globally. Again, those calls came from the committee’s report on long Covid two or three years ago, when we were saying the same things.

I recognise that the healthcare system is under stress. However, there are an estimated 187,000 sufferers of long Covid. I have to confess that I have had long Covid myself, although much less severely than some of the people to whom we spoke earlier today, and it still affects me and my system. I do not in any way, shape or form have the same issues as the people who we met today. However, given that it still affects me every now and again, two to three years later, I can only imagine what it is like for people who have a more serious form of the condition. They talk about having joint pain, chest pain, abdominal pain, brain fog and the inability to think straight and headaches. Those symptoms come back and revisit them often.

We need to take long Covid much more seriously than we currently do. We need a pathway for diagnosis and treatment. I understand that £10 million was put into long Covid, but that was for a period of four years; £2.5 million per year is not going to scratch the surface. We need to start looking at diagnosis, pathways, research and gathering the data. We also need dedicated healthcare professionals who have experience in long Covid treatment because to this day, many of our healthcare professionals are unaware of how to diagnose long Covid and how to treat it.

Once again, I thank Sandesh Gulhane for bringing the debate to the chamber. I thank the people who are in the public gallery for taking the time out to come here—I know that they will pay for it. I say to the Government that it is time that we had a plan to deal with the condition once and for all.

17:49  

I thank Sandesh Gulhane for bringing this important debate to the chamber this afternoon. My thoughts are with those who have lost their lives and those who continue to live with long Covid.

A recent report from Chest Heart & Stroke Scotland highlights that Covid is still shattering lives, with around 180,000 people in Scotland suffering from long Covid. Far be it from me to correct Jackie Baillie, but the Liberal Democrats brought the first long Covid debate to the chamber in November 2021. At the time, Alex Cole-Hamilton said:

“I am dismayed, however, that we are already 18 or 19 months into the pandemic, and it is at least 12 months since the first sufferers of the condition that we now know as long Covid had that condition identified. It is disappointing, therefore, that it has taken Opposition time, in a members’ business debate, to lead, for the first time, on this important subject in the chamber.”—[Official Report, 9 November 2021; c 75.]

I am a member of the cross-party group on long Covid, which continues to advocate for those who are living with long Covid and raises the issue repeatedly with the Scottish Government, as do Long Covid Scotland and Long Covid Kids Scotland.

I am sure that we all know someone who has had their life turned upside down due to having had Covid. Some people are now entering the fifth year of a new phase in their life, and I am sure that we have all had constituents reach out from the situation in which they find themselves, adjusting to their new reality and describing feeling helpless as they try to restore some of their previous wellbeing.

I have previously mentioned a constituent of mine who raised with me the lack of dedicated care for children who are living with long Covid. The parent told me:

“Our son is very unwell again and it is utterly devastating to see. The lack of support for children with long covid and their families in Scotland is a national disgrace.”

Long Covid has affected people of all ages, and it has had a profound effect on the development, socialisation and learning of young people who are living with long Covid, as well as, obviously, on their health. The COVID-19 Recovery Committee’s report on long Covid highlighted the lack of research or guidance on the impact of long Covid on children and young people.

Another constituent whom I met recently has had long Covid for 14 months. The life that he had before is not the same as the life that he has now. He has had to give that up, including his job, his home and his sport, and he now relies on support from his family. He has no complaints about the support that he gets from his GP, but he is surprised at the slow progress that has been made in the treatment and diagnosis pathway here in Scotland.

People are spending their life savings on support from private clinics elsewhere in the UK and in Europe, because of the postcode lottery of treatment and support. Put simply, if someone has long Covid in Scotland, the Scottish Government has allocated around £16 towards their treatment and care in totality. The amount of money that is spent on the condition in England is almost 10 times what it is here.

To conclude, we need to do more to recognise that Covid is still among us and to prevent adults and children from catching it in the first place. The Scottish Government needs to adopt a comprehensive and fully funded long Covid strategy to support those who are living with long Covid. Such a strategy should build awareness among employers so that they can recognise it for the disability that it is. We should be giving occupational therapy and social care to everyone who needs them, particularly those who are managing the condition from home. All that needs to work hand in hand with enhanced psychological support to recognise the impact that long Covid has on people’s mental health.

17:53  

I thank Sandesh Gulhane for bringing this important motion to Parliament.

The shadow of Covid-19 hangs over all of us. It has left its mark: front-line workers not supplied with personal protective equipment, which there was a legal duty of care to provide; our most vulnerable citizens—care home residents—placed in unnecessary, mortal danger, their basic human rights denied and discarded; parents of critically ill children unable to be with them in hospital emergency departments; children unable to say goodbye to dying parents; funerals unmarked.

All of the while, both Governments chose not to follow World Health Organization advice. They chose not to follow the basic principles of public health and infectious disease control. They chose not to test, and the shadow is still with us.

As members of this Parliament we meet some extraordinary people, and I can think of no group who have made a bigger impression on me than the long Covid support group that meets in Brightons parish church hall. For too long ignored as individuals, they got organised as a collective. Up against bureaucracy, they adopted the values of self-help, mutual aid and support, and they provide a united voice. Where once they were invisible and silent, they are now highly visible and justifiably vocal.

When I meet the group, they tell me that they are still falling through the gaps of what they always believed to be a cradle-to-the-grave system. The first time I met the group, I spoke to a woman with long Covid who still worked night shifts, was now in her 60s and had worked since she left school at 16, was struggling with both her physical health and her mental health, but simply could not afford to retire. It could make you weep.

Misdiagnosis is common. All too often, women are told that they have the menopause, not long Covid. One of my old shop stewards, who is in the group, put it starkly when he said:

“If you’re thinking about going out, you have to think about getting back.”

Many in the group now have chronic respiratory conditions, and we know that long-term conditions are even less adequately funded than acute care in our public health system.

The one ray of light that shone through the shadow of Covid-19 was the rekindling of the principles of solidarity, sacrifice and human co-operation. That it did not reach those lawmakers who secretly and criminally organised mass social gatherings, then tried to cover them up—and who even now show no contrition—should not surprise us, but it should stir us into action, because there is a better way.

We cannot right all of the wrongs of the past, but we can tackle the injustices of the present. That is not merely a job for Government; it is the duty of every single member of this Parliament. We must all be led by long Covid sufferers and their families, like those I meet in Brightons. We need to empower them and give them agency, so that our value systems, our institutional forms and our political response are shaped by them, driven by them and all bound together with the solemn guiding principle that we remember the dead but that we fight for the living.

17:57  

I, too, commend colleagues for securing the debate. I look forward to hearing the Government’s response, building on the funding and planning that have already been proposed.

What more will be done to support my constituents with long Covid? As part of those considerations, I want to raise awareness of a group of people in my constituency with ME who have been in touch with me for some time, and whom I have sought to represent. That is, unfortunately, a growing community, in my constituency and indeed internationally, because of the parallels between and synergies of the suffering of those with long Covid and those with ME.

I wish briefly to emphasise the importance of considering ME in tandem with how we support people with long Covid. ME should not be forgotten. There have been more and more cases of ME internationally since the outbreak of the pandemic. Such conditions require particular attention for individuals, with their various symptoms, but the same debilitating effects are present among those with ME and those with long Covid. Those people need our help, and I look forward to hearing about what further actions—research, support and treatment—the Scottish Government may be able to undertake.

17:59  

I, too, thank Sandesh Gulhane for securing tonight’s debate. Like Beatrice Wishart, I hope that, one day, we might have a Government-led debate on this subject, which would show that the Government is taking it seriously.

Although the World Health Organization declared the Covid-19 public health emergency to be over in May 2023, Covid has never gone away. Covid-19 has now moved to its endemic phase. Although the Scottish Government lifted its measures to deal with the pandemic in August 2021, years later, for the estimated 187,000 people in Scotland who are living with long Covid, the pandemic has still not ended.

Long Covid can be life changing for those who are affected by it. It causes fatigue and breathlessness, among other symptoms. It can completely change the lives of people who had previously been perfectly healthy. We saw that at the drop-in session that we had earlier today.

Long Covid can affect anyone, and it can affect them after any exposure that they have had to Covid. It is estimated that one in 10 cases of Covid develops into long Covid, as happened to the daughter of one of my constituents, Helen Goss, who has had to take legal action against NHS Grampian because of the poor—or non-existent—long Covid treatment that her daughter has received. Regrettably, Helen has been forced to go down the route of legal action, as it seemed to be the only viable option for her to secure and progress the healthcare that her daughter, Anna, urgently requires and rightfully deserves.

As a parent, I cannot imagine what Helen is going through. She desperately wants to get help for her daughter, and she must feel frustrated about the lack of help that she is receiving. What has it come to when parents are having to go to court to get medical assistance? The NHS and the Government are letting such people down.

However, Helen is not the only one. Today, I have talked to other parents and grandparents who are having to fight to get the treatment that their children and grandchildren deserve. How can that be right? Ten thousand kids are being let down. We cannot leave them behind.

To protect people from the detrimental impact of long Covid, prevention is key. I draw the Scottish Government’s attention to the petition that Sally Witcher lodged in December 2023, which called on the Scottish Government to do more to help to prevent the spread of Covid and, by extension, the likelihood of people developing long Covid. We all know that one of the best ways of preventing the spread of Covid is by increasing ventilation. In NHS England, the UK Government is encouraging the use of high-efficiency particulate absorbing filters in public buildings. NHS England recognises the important role that HEPA filters can play in reducing the transmission of Covid-19.

Despite the fact that HEPA filters have an efficiency level of more than 99 per cent, their use is not being replicated in NHS Scotland. As I remember, the only ventilation method that was proposed by the devolved Government was sawing the bottom off classroom doors. The Scottish Government must ensure that a joined-up approach is taken, which brings to the forefront mitigation measures such as greater ventilation in new buildings and upgrades to ventilation in existing buildings.

Long Covid has a debilitating impact on those who have contracted it. The socioeconomic impact is obvious: it stops people working, which has a long-term effect on local economies, as Brian Whittle said earlier. Prevention is key to ensuring that people avoid contracting long Covid.

As we have heard, this is the third debate that the Parliament has had on the subject. It is time that the Scottish Government listened to campaigners and finally acted, for those who are suffering cannot wait any longer.

I call Fulton MacGregor, who will be the final speaker in the open debate.

18:03  

Thank you, Presiding Officer. Originally, I was not down to speak, so I appreciate you bringing me in. I thank Sandesh Gulhane for lodging his motion on this extremely important issue.

The minister will be aware—as will her predecessor—that, for some time, I have been raising the case of a constituent of mine, Jonathan McMullen, who was at high school when he contracted Covid but is now a young man. As a result of long Covid, his whole life has been totally changed. For long periods, he was not able to get out of bed. His mum, Tracy McMullen, who has been an ardent campaigner for Jonathan—and, by extension, long Covid sufferers—has spoken to me about how that has impacted him, his life and his future. They have had to fight for absolutely everything. They have had to fight with medical professionals, local authorities and others just to be heard. For example, Jonathan has postural orthostatic tachycardia syndrome—POTS—but they have had to fight for that to be recognised and to get appropriate treatment and appointments. That fight is still on-going. I say to Jonathan and his mum: please know that you will always have my support with that, as your MSP.

People face brick wall after brick wall because, as other members said, there is a lack of understanding of what the symptoms are and are not. What do people know? That is not the fault of professionals. More needs to be done on long Covid so that people in the profession know what they are dealing with when somebody presents with the condition. We need more research into long Covid. We need to learn more about it.

The minister will not mind me saying this, because I come to the chamber to stand up for my constituents on the issues that they bring to me. She knows, and the Government knows because I have raised it in the chamber, that I think that folk with long Covid are being left behind and that we need to do more. Scotland is probably not unique in that we are catching up as we come out of the pandemic, but Bill Kidd made some important points. Scotland used to lead the way on things. As part of the UK, we led the way on the vaccine for tackling Covid. We need to do more to tackle long Covid, lead the way again and get in front on it.

Bill Kidd made a great suggestion. His speech prompted me to press my request-to-speak button, because I have raised Jonathan’s case in the chamber several times. There is potential for a summit in Scotland that brings together experts so that we learn what we know and do not know about long Covid, learn what could and could not work and, as Ben Macpherson mentioned, link it to ME and other similar diseases, as there are some indications that there might be overlap.

Let us lead the way on the matter. Let us be bold. I say to other parties that we should not play a blame game about not doing enough or not doing X, Y and Z. Let us work together on long Covid across the chamber and across society, because a growing number of people need it. Every member will have had long Covid constituents and will continue to get more. There is a duty on all of us to try to get the approach right, to back the minister’s approach to taking the matter forward and to try to work together.

18:07  

I, too, will reflect on the experience of people who have lost loved ones through Covid and of those who are living with long Covid. I thank Sandesh Gulhane for bringing this important debate to the chamber and all speakers for their considered contributions.

I, too, welcome the people who are in the public gallery. I recognise that, for many of them who live with long Covid, it will not have been a small undertaking to travel to be with us. I was pleased to spend my lunch time with members of Long Covid Scotland and others outside the Parliament and, at the drop-in session later on, to listen to people’s thoughts, concerns and disappointment. I thank them all from my heart for being so candid in sharing the challenges that they live with daily. I also thank them for the constructive provocations that they gave me to consider.

The contributions to the debate have clearly highlighted the significant impact that long Covid continues to have on the lives of adults and children who live with the condition across Scotland. I will meet Long Covid Scotland and Long Covid Kids Scotland, including Fulton MacGregor’s constituent, later this month.

I understand that symptoms vary considerably and can be unpredictable and unrelenting. Long Covid can impact on every aspect of daily life, not just physical health. I have been struck by stories of the impact on relationships, education and employment, as the briefing that Chest Heart & Stroke Scotland provided for the debate reminds us.

International long Covid awareness day, which is marked later this week, is an important milestone in bringing those issues into sharp focus, and so, too, was the COVID-19 Recovery Committee’s consideration of the subject. I thank everyone who took the opportunity to contribute to the process—the MSPs, stakeholders and those with lived experience. Since the publication of the committee’s report, progress has been made in a number of key areas, and I am pleased to have the opportunity to outline some of that.

On funding, we remain committed to delivering the £10 million long Covid support fund in full. Members might be aware that NHS boards do not require to fully utilise long Covid support funding made available to them over the first year of the fund. We have therefore made plans to allocate the remainder of the fund over the coming financial year and the next one. We will also consider baselining long Covid support funding for NHS boards at a level to be determined, based on the progress made by NHS boards over 2023-24.

My recollection—the minister should correct me if I am wrong—is that the underspend in the first year was allocated very quickly to a range of organisations. Is the £10 million being stretched over four years? There is no spare money in the system; the Government allocated it.

It is fair to say that not every board spent its allocation. We are ensuring that boards do so. As was pointed out in a number of speeches, it takes quite a while to employ people. However, we are committed to spending the £10 million.

It is simply not true that the Scottish Government received any consequentials that directly relate to the resource that NHS England allocated for long Covid, as that was not new funding.

On public information, we have worked with NHS Inform, which is Scotland’s national health information service, to update the range of long Covid information available on its site. That followed a user research exercise to allow us to better understand the experiences of those living with long Covid, as well as their suggestions on priorities for further development of the content.

On education for healthcare professionals, a suite of updated educational resources has been published on NHS Education for Scotland’s Turas learning platform to improve healthcare staff’s knowledge and understanding of long Covid. Specifically on children and young people, the national strategic network for long Covid is currently developing a clinical pathway to support the appropriate assessment, referral and management for children and young people with long Covid symptoms. Once that work is completed, the information will be shared with NHS boards for local implementation.

As part of the committee’s investigation of long Covid recovery, we took evidence from health boards not only across the UK but across the world on their experiences of, and how they are dealing with, the problem of long Covid. Obviously, the problem is not just here. Is the Scottish Government still pooling data and recommendations from around the world?

I can give you the time back, minister.

I will touch on that issue later.

The motion highlights the importance of clear referral pathways. I can update members on that. Twelve of our 14 NHS boards now have long Covid pathways in operation for adults. Elsewhere, boards have well-established referral pathways to a range of services that can provide support to people with symptoms resulting from long Covid.

I was very pleased to visit NHS Ayrshire and Arran earlier this week. It might be worth while for Mr Whittle to visit the service there. [Interruption.] I hear that he already has—that is great. I met the team that is responsible for the planning and delivery of the board’s long Covid multidisciplinary pathway and heard about how it is utilising funding made available through the Scottish Government’s £10 million long Covid support fund. The pathway provides a single point of access for assessment and co-ordinated support to help people to manage their long Covid symptoms. The service has physiotherapy, occupational therapy and nursing support, and it liaises with primary and secondary care and third sector partners.

It is clear that a multidisciplinary team is important—a number of members have noted that. Having spoken to that team, I certainly felt that its commitment to continuous improvement and learning was obvious, whether that is through undertaking additional training, learning from and sharing the unique skills and expertise that each member brings to the multidisciplinary team, learning from the experiences of peers in other NHS boards and elsewhere, or listening to patients, which is important, as a number of members have mentioned.

In that respect, our national strategic network for long Covid is important in giving our territorial NHS boards a forum for sharing learning and best practice from within and beyond Scotland in developing support services for people who live with the condition, as Brian Whittle suggested.

I, too, was privileged to meet someone who told me about their experience of developing long Covid and the impact that it continued to have on their daily life. Hearteningly, they spoke about how the expertise and support provided to them through the long Covid pathway was a significant milestone in their journey with long Covid.

The points that Ben Macpherson made struck me, too, when I spoke to that patient, as she drew connections with ME and its debilitating effects. Scotland is doing some research in the Western general hospital in Edinburgh, which I have visited, and I will maintain in my thoughts the possible connection between ME and long Covid.

I was also struck by the reflections on the care and compassion of the multidisciplinary team and the value that patients placed on being listened to and validated by healthcare professionals. That, too, resonates with what many members have said this evening.

I want to make it clear that I absolutely recognise that there is more to do to ensure that people’s experiences of accessing healthcare support are consistent. We remain committed to working closely with our national strategic network, which has commissioned the University of Leeds to support the initial evaluation of long Covid services in Scotland.

I appreciate that the limitations of the long Covid treatment approaches that are currently available globally will be a source of frustration for those who live with the condition, but we need to ensure that treatments are evidence based. There is still a great deal to be learned about long Covid, which is why we are contributing to the worldwide research effort to better understand the condition.

Our chief scientist office has awarded a total of about £3.1 million for 11 projects on the long-term effects of Covid-19. That includes projects to better understand the underlying risk factors of long Covid, to examine the effects on cognitive function, to evaluate rehabilitation approaches and to examine access and explore how to improve people’s support through primary care. I use this opportunity to highlight the fact that the chief scientist office’s research funding schemes are open to applications on long Covid. Those would go through CSO standard independent expert review processes to allow funding decisions to be made.

I note the proposal that Fulton MacGregor made about a summit, and I am happy to take that away and speak to my officials about it.

In closing, I again acknowledge the significant impact that long Covid can have on the lives of people who directly experience it, as well as those closest to them, and I reiterate that supporting people who live with long Covid remains a priority for the Government.

That concludes the debate.

Meeting closed at 18:18.