Meeting date: Thursday, May 19, 2022
Meeting of the Parliament (Hybrid) 19 May 2022 [Draft]
Agenda: General Question Time, First Minister’s Question Time, Union Canal: 200th Anniversary, Portfolio Question Time, Long Covid, Decision Time
- General Question Time
- First Minister’s Question Time
- Union Canal: 200th Anniversary
- Portfolio Question Time
- Long Covid
- Decision Time
The next item of business is a debate on motion SM6-04472, in the name of Humza Yousaf, on long Covid. I invite members who wish to speak to press their request-to-speak button now, please.14:57
I welcome the opportunity to discuss our collective commitment to supporting the health and wellbeing of people in Scotland who are living with the long-term effects of Covid, or long Covid, as it is often called for short.
As we will hear today, although most people recover quickly from coronavirus, some people—both adults and children—can experience on-going symptoms for months, or even years, after their initial infection. When we talk about long Covid, it is important to remember that that is an umbrella term that covers a spectrum of different symptoms. I suspect that when members across the chamber share stories that they have heard from constituents or others they have engaged with who have long Covid, they will no doubt go through a number of those symptoms. Symptoms can vary in their presentation and impact from person to person, and can include fatigue, shortness of breath, changes to sense of smell and taste, difficulty concentrating, muscle aches and many more.
It is clear that for the adults, children and young people who are most severely affected, those symptoms can have a significant impact on many areas of their lives, from physical and mental health to relationships, education and employment. I have met people who have told me that their lives today are now, in effect, unrecognisable from the lives that they had been leading prior to their catching Covid.
I am grateful to the cabinet secretary for taking my intervention. Would he consider assessing certain types of long Covid as a disability, potentially bringing those affected within the disability rules?
It is my understanding that, under current legislation, those who are suffering from the effects of long Covid could be termed as having a disability, depending on the impact or effect of the condition. I am interested in furthering the discussion about whether long Covid should be brought under the umbrella of a disability. Of course, we work closely on a four-nations basis with other parts of the United Kingdom, given that there can often be overlaps between devolved and reserved competencies on that issue. Brian Whittle has raised an important point.
Given the range of symptoms that can be involved, there is no one-size-fits-all response to supporting people, as they will require intervention and support that responds to their own unique circumstances. For example, we know that some people with long Covid may benefit from information and support to help them to feel more in control of their condition and to manage it day to day. I have a family member who is in that position; they do not need any further support at this stage, and I hope that they will not in the future, other than managing their condition—the breathlessness that they face—day to day.
Nonetheless, I fully accept that others—I have met many such people—may require assessment by a member of their local primary care team, who may conduct tests to investigate their symptoms and provide access to other services where that is appropriate, such as community and mental health services, including rehabilitation. A smaller group of patients may require further investigations and assessments that are delivered in a specific clinic or hospital setting.
At this point, I want to mention children. When we talk about long Covid, we often talk about adults, but I suspect—indeed, I know—that most members in the chamber will, like me, have engaged with Long Covid Kids, which is an important organisation that represents young people who are suffering with the long-term effects of Covid. The organisation has produced a support guide specifically for children, and I look forward to receiving it formally in the coming weeks.
I know that there is a desire among those who represent children who are suffering with the long-term effects of Covid for more to be done around education, on top of dealing with the health and mental health issues that affect children in particular. That is a challenge for the Government—can we do more around flexibility in education? I have promised Long Covid Kids that the Government will progress that issue.
I am grateful to the cabinet secretary for giving way, and for taking time, in his remarks, to talk about young people and children who suffer with long Covid. Can he quantify the situation for members? How many children in Scotland currently have long Covid? That statistic is quite hard to come by.
We know that we can prevent long Covid in children by preventing them from catching coronavirus in the first place by installing high-efficiency particulate air—HEPA—filters in Scotland’s classrooms. Can he address that point and say whether his Government plans to do just that?
I ask the member to forgive me—I do not know if I have the figure for children. I will have a look at that, and come back to him; perhaps we will address that in closing the debate. We know that the most reliable surveys on long Covid tell us that more than 155,000 people in Scotland are suffering from it, but we can probably do more on data gathering.
I have said to Long Covid Kids, and I say to Alex Cole-Hamilton, that with regard to any good ideas that come forward in relation to education and educational settings, this Government will seek to not only progress but, where appropriate, resource them.
With regard to our actions and interventions as a Government, I want to put to bed any suggestion at all—although I am sure that such a suggestion would not be made in the chamber—that our hard-working national health service and social care staff are not currently helping to care for people with long Covid. That notion is simply untrue, and my thanks go to every single doctor, nurse, allied health professional, social care worker, member of third sector staff and the many others who have been working tirelessly to support those who are suffering from the long-term effects of Covid.
For example, the Thistle Foundation is delivering its remote self-management programme, with a specific focus on supporting people with long Covid. That initiative has received £60,000 from the self-management fund, which is administered by the Health and Social Care Alliance Scotland on behalf of the Scottish Government.
Calum Kennedy talked about his experience of using the service, saying that,
“Thanks to the incredible support ... received from Thistle”,
he now has
“confidence that at some point in the future”
“will be able to make a full recovery.”
Chest Heart & Stroke Scotland, which is also supported by funding from the Scottish Government, is delivering a long Covid support service. The service enables people to receive advice from nurses who are trained in managing common long Covid symptoms, such as breathlessness and fatigue. Almost 1,500 people have accessed the service since it was established, and 85 per cent of respondents to an evaluation exercise “strongly agreed” that they felt supported to look after their health and wellbeing.
NHS Inform has a dedicated website for people with on-going symptoms after coronavirus, which sets out key information and sources of support. In addition, all our NHS boards have been delivering support to people with long Covid through providing access to local services that are relevant to addressing people’s symptoms and needs.
As just one example, NHS Lanarkshire’s primary care occupational therapy service has supported people with long Covid to address issues that affect their day-to-day quality of life, including by helping them manage pain and fatigue and supporting a return to employment. One person who accessed the service described her local occupational therapist as being “an amazing help” in her journey.
However, I am equally clear that I have heard from too many sufferers of long Covid that they do not feel that they have had a consistent level of support or care, and that concerns me greatly. It presents challenges for those who are living with persisting symptoms and who, quite understandably, are desperate for an answer on how long their symptoms can be expected to last and what the underlying mechanism is that is causing them. Frankly, it also presents challenges for our health and care staff, who are supporting people living with a new condition for which the chapter in the medical textbook is—I say this in all earnestness—still to be written.
I share the deep sense of frustration of people who are living with long Covid that, although there might be approaches and treatments for managing some symptoms, according to the National Institute for Clinical Excellence, there is
“a lack of evidence for pharmacological interventions to treat”
long Covid. That is why, of course, some of the funding that we are bringing forward is for further research into the condition.
Can the cabinet secretary confirm whether that data collection will include data on inequalities in relation to the way that long Covid has affected different groups of people?
As I said in response to Alex Cole-Hamilton, I think that it absolutely should. I am being up front and frank about this: I do not think that we have the level of granularity in the detail that we need in relation to those who are suffering with long Covid. We have some of the headline figures but, at a more granular level, when it comes to, for example, how many children, people with disabilities and minorities it affects, that data is not in a place where I would like it to be.
We are not just waiting for research findings to materialise. We are listening, we are taking action and we will continue to take further action as necessary. In that light, I am delighted to confirm that we are allocating additional funding—I stress the word “additional”—of £3 million to health boards across 2022-23 to bolster the support that they are already providing to people with long Covid.
Will the cabinet secretary give way?
I will shortly. I have taken a fair number of interventions.
That funding responds directly to needs that have been highlighted by boards and their learning from supporting people with long Covid since the start of the pandemic.
Crucially, the funding has also been shaped by the priorities that have been highlighted by people who have long Covid, including that finding the right support and navigating their way through it when they are experiencing multiple symptoms—particularly forgetfulness, or brain fog—can be challenging. That is why our investment will test the introduction of care co-ordinator roles, which will provide a single point of contact for people with long Covid and their families.
People with long Covid have also stressed the value of clinicians taking time to listen and showing empathy, and of feeling understood and having their concerns validated. That is why our investment will provide extra resource to support people with long Covid to receive a holistic assessment of their needs, to ensure that they can access the community or healthcare support and services that are most appropriate in their individual circumstances.
The additional funding will also provide additional capacity for community rehabilitation services such as occupational therapy. Those services can support people with long Covid to address issues that affect their day-to-day quality of life, including by managing their pain and fatigue and supporting a return to employment. Some of that investment will also be focused on children; for example, part of NHS Greater Glasgow and Clyde’s funding will be for paediatric OT.
Could the cabinet secretary confirm for me—because I think that clarity is important—that the £3 million that he talks about as being additional is actually part of the £10 million that he announced in September 2021?
Yes, it is part of that £10 million fund, but what I mean by “additional” is that it is on top of what has already been spent to help to address and alleviate—I hope—some of the symptoms of long Covid sufferers.
I am very conscious that I am getting towards the end of my time. I could say plenty more, but my colleague the Minister for Public Health, Women’s Health and Sport will add further detail when she sums up in closing the debate.
From our perspective, our strategic network—which is made up of clinicians and colleagues from health boards, but also, importantly, those with lived experience—will continue to guide us on the way forward in managing and, I hope, being able to assist those who are suffering from the long-term effects of Covid.
I reiterate my personal commitment, and the commitment of the Government, to continue to listen, to learn and to draw upon the best available evidence, to ensure that every person with long Covid is able to access the safe, effective and person-centred support that is right for them, as locally and as quickly as possible.
That the Parliament recognises the negative impact that long COVID is having on the health and wellbeing of those affected in Scotland; acknowledges that, while some people do recover without clinical support, for many adults and children, the longer-term effects can be debilitating; believes that those who need clinical support in managing the impact of long COVID should have the right help at the right time through health and wellbeing support and services that are accessible in a setting as close to their home as practicable; understands the importance of existing NHS services providing support to those who need it now, but also developing sustainable models of care that will benefit the management of other long-term and complex conditions; recognises the role of NHS boards, working in partnership with local authorities, people living with long COVID and the third sector, to design models of care tailored to the needs of their local populations, which may involve strengthening the co-ordination of existing services, or establishing dedicated services, including long COVID clinics; welcomes the recommendations of the National Strategic Network on the initial priority areas for improvement; further welcomes the first allocation from the Long COVID Support Fund of £3 million across 2022-23 to bolster the support to people with long COVID; notes that this investment includes the introduction of care co-ordinator roles, extra resource to support a patient-centred assessment of need through a range of approaches, including a multi-disciplinary assessment service, and additional capacity for community rehabilitation to support people with issues affecting their day-to-day quality of life; further notes that the Strategic Network will be supporting the education of healthcare staff, including improving access to information resources on the identification, assessment and management of people with long COVID, and considers that research will continue to improve understanding of the long-term effects of COVID-19 and identify effective treatments.
I call Sandesh Gulhane to speak to and move amendment S6M-04472.3.15:09
It is great that this key debate on long Covid has been rescheduled. However, given the growing scale of the problem, it is many months overdue.
The cabinet secretary might be surprised to hear that Scottish Conservatives agree with him. We also recognise the negative impact that long Covid is having on so many Scots and the debilitating long-term effects that they are suffering. We also agree that the NHS and the third sector are working hard to help with long Covid. However, waiting times are so long. For example, our waiting time for gynaecology appointments in Glasgow for cancer patients is currently six to eight weeks.
I am pretty sure that people who are struggling with long Covid—some of whom are watching from the public gallery, such as Stuart, and others who are following the debate at home—will not be impressed if we just continue to reel off generalisations. They do not really want to hear platitudes such as that people who need clinical support should have the right help at the right time. Long Covid sufferers want concrete action from the Scottish Parliament, and they need it now; in fact, they needed it last year.
The Scottish National Party and Scottish Green Party Government’s inaction is having a real impact on people who have been affected by long Covid. When its paper was published in September last year, we estimated that around 79,000 people in Scotland were suffering from long Covid. Now, after eight months of dither and delay, the number has almost doubled to 151,000 people. I ask members to let that sink in.
It is not as though we did not know that long Covid was coming. In March 2020, Scotland confirmed its first case of Covid-19. From the summer of that year, it was clear that a rapidly growing number of people were not getting over their run-in with the virus. At my general practice surgery, more and more patients were presenting with what seemed to be random symptoms such as fatigue, dizziness, brain fog, pain in their joints and poor mental health. Their symptoms continue to be wide ranging, including slurred speech, indescribable headaches, fluctuating heart rate, numbness and abdominal issues.
Long Covid is hitting the country hard, impacting—
Sandesh Gulhane has described his experience in the foothills of the pandemic. Does he recognise that people who had long Covid from the first wave perhaps did not have a positive test result on their medical records, because we were not testing at that point? Similarly, we are not testing now, so people who develop long Covid as a result of their infection will again have to fight to get that diagnosis.
I agree absolutely. It is important that if we offer support to sufferers of long Covid, one of the key tenets should be that that should not depend on their having had a positive Covid diagnosis, given that we know what Alex Cole-Hamilton described to be the case. The cabinet secretary and I have spoken about that, and I feel that he agrees with the view of the Scottish Conservatives.
As Dr Gulhane is a clinician, he will be able to confirm that a person’s receipt of support for the long-term effects of Covid is not reliant on their having had a positive test.
Absolutely. As I said, from the conversations that the cabinet secretary and I have had, I think that he agrees with us on that point.
Long Covid is hitting the country hard and impacting individuals, families, the labour market and the delivery of healthcare services. As the cabinet secretary said, long Covid hits patients hard; as a practising general practitioner, I have countless examples.
There is a young mum who had a job, used to run five to 10km a day and has a family, but now she can barely make it to the toilet without feeling breathless. She had no choice but to give up work, so financial pressures are coming and she has been forced to sell her house and move in with her parents.
I know a doctor in Scotland who was forced to quit because of the exhaustion and headaches, which made it impossible to function. Telephone consultations were out of the question because she was so breathless she could not do them.
Then there is our youth. More than 80,000 12 to 16-year-olds across the United Kingdom are struggling to function with long Covid.
In my Scottish Parliament maiden speech, on 27 May last year, I underscored the problem of long Covid, and on 1 June, as members of the Scottish Parliament debated the national health service recovery plan, I called on the Cabinet Secretary for Health and Social Care to commit to establishing a specialist long Covid clinic.
Our paper, “Treating Long COVID in Scotland”, which came out shortly afterwards, sets out an action plan that includes investing in a network of specialist clinics and an app-based treatment service, ring-fencing funds for Covid care, and establishing a programme of research to discover more about the disease and its long-term impact.
Having extensively researched how regions across the UK were responding to long Covid, I recommended that the Scottish Government should take the holistic approach developed by Hertfordshire Community NHS Trust. That involves a rehab pathway with a multidisciplinary team including GPs, physios, respiratory nurses, dieticians and clinical psychologists who can refer patients to other clinics, and much of it is delivered remotely. The team in Hertfordshire freely admits that it did not get everything right. It would happily tell us how to get things going in Scotland, but I am concerned that we might want a north-of-the-border solution.
We are still waiting for a solution. On 9 September, the Cabinet Secretary for Health and Social Care announced, with a fanfare, £10 million for long Covid and a promise to deliver the best models of care to help health boards respond to the condition. Yet where are we now, in May 2022?
While England has 90 long Covid clinics—and I accept that not all have received positive feedback—Scotland does not have any. As for the £10 million to support long Covid services, that sum has been tweaked, with £3 million allocated for this year and next and more money to come. Will that new money even touch the sides? Will there be a clear audit trail on how it is spent? I hope so.
Scotland faces a tsunami of long Covid cases but the Scottish Government has not acted, and that is not lost on long Covid patients, who are suffering. I received an email this week from a man who caught Covid in 2020 and has been suffering from cognitive and visual issues for two years. No clear clinical pathway exists for him. He said that his mental health had not been looked at and that he did not feel that mental health had been part of the long Covid dialogue, yet it is crushing thousands of Scots with the condition—he knows of two long Covid sufferers who have recently died from suicide. He signed off by saying that he had watched the cabinet secretary on BBC’s “The Nine” and was deeply disappointed in the clear lack of understanding regarding the situation that sufferers face.
Today, we were hoping that the cabinet secretary had good news for the country’s 151,000 sufferers. We would welcome more detail around the role of a long Covid co-ordinator, for example on whether they would be clinical or non-clinical and whether they would be available throughout Scotland.
What would good news look like for people who are watching the debate from the public gallery and around the country? To start, we need a joined-up approach in which GPs can make speedy referrals to a Covid clinic without having to see the patients multiple times, and in which they can make multiple referrals to specialties such as occupational therapists, physios, cardiologists or respiratory specialists.
We also need to urgently create an NHS long Covid app for Scotland. We do not need to reinvent the wheel or repeat the issues of the failed Covid passport app. It should be noted that the Barts Health NHS Trust in London had an app up and running in December 2020. We should be learning from tried and tested best practice from north and south of the border or from east and west of the country—it does not matter.
In our major cities, it might still be desirable to bring specialties together under one roof, but a central belt solution does not work for the Highlands or the Borders. Many long Covid sufferers simply cannot travel, which is why the Hertfordshire model works, as it is not one size fits all.
NHS staff are going above and beyond but they cannot provide the service that patients deserve, because we are failing to tackle long Covid head on. We need to launch and operate a network of long Covid clinics. Tackling long Covid is key for the whole of Scotland, to speed its recovery from the coronavirus pandemic. Long Covid sufferers are demanding—begging for—long Covid clinics, and we need to listen to them.
We cannot support the Scottish Government’s motion, because it does not go far enough, despite some of the things that we agree with.
I refer members to my entry in the register of members’ interests, as a practising NHS GP.
I move amendment S6M-04472.3, to leave out from “believes” to the end and insert:
“notes that 151,000 people in Scotland are currently estimated to have long COVID in Scotland, including 64,000 who have been experiencing symptoms for more than a year; recognises that the number of people experiencing symptoms for more than a year has doubled in the last six months, and that faster action from the Scottish Government could have alleviated this and reduced the very substantial pressure on primary care; regrets the pace of the approach taken by the Scottish Government, which has seen funding allocated a full six months after it was promised; regrets that a lack of adequate data from the Scottish Government has contributed to its slow and inadequate response; notes that £10 million for all NHS boards over three financial years will be wholly insufficient to tackle the scale of the problem; regrets the Scottish Government’s continued failure to deliver specialist long COVID clinics in Scotland, meaning that people in Scotland are being left behind without access to the treatment they deserve; calls, in consequence, on the Scottish Government to deliver a network of long COVID clinics across Scotland; requests that the Scottish Government undertakes work with relevant clinical and regulatory partners to develop a long COVID clinical pathway, and asks the Scottish Government to adopt an app-based treatment service to reduce pressures on other parts of the NHS.”15:18
As others have said, the debate is long overdue, having been cancelled last month to spare the cabinet secretary’s blushes because not one penny of long Covid money had been allocated. Two years on from when I and others first raised the issue of long Covid with the Scottish National Party Government, we now see baby steps being taken. Snails move at a faster pace.
An estimated 151,000 people in Scotland are suffering from long Covid. As many as 10,000 are children and 64,000 have experienced symptoms for over a year. That number is rising steadily by tens of thousands, month after month, as Covid continues to tear through our communities.
Long Covid is debilitating. It impacts on daily lives. Many sufferers are unable to work or to undertake the simplest of tasks without being exhausted. David told Long Covid Scotland how he has gone from being a fit and professional civil servant who worked 40 hours a week to being housebound. He said:
“I did my part and didn’t seek treatment at the height of the pandemic. I went to bed each night not knowing if I would wake up the next day. I’ve hit a wall with treatment and there’s basically nothing available to support me.”
Freja told Long Covid Scotland:
“My life has been on hold due to Long Covid and my world has shrunk. It is inhumane to leave us suffering like this with no treatment.”
That is the reality for people who are living with long Covid.
The £10 million that was announced for long Covid treatment last year has still to be spent. Not a single penny has yet been used to treat and support people with the condition. From Dumfries and Galloway to the Western Isles, from Lothian to Glasgow to Ayrshire and Arran, not a single health board has received any money so far. However, do you know what? They all got a letter today notifying them of funding—just in time for the debate. A person much more cynical than I am would wonder at the timing. Cabinet secretary, tell us about the timing.
Is Jackie Baillie seriously suggesting that our hard-working nurses, doctors and AHPs have not been treating people with long Covid? If they have been treating people with long Covid, that has of course been funded by the Scottish Government. This funding is additional, on top of what we have already provided in funds to our NHS. Does Jackie Baillie accept that point?
That is so disappointing, because, even if nobody else knows this, the cabinet secretary knows that the NHS is stretched to breaking point. It is in crisis. The cabinet secretary is asking staff to do even more with the little money that he gives them, and the £10 million that he announced months ago has not been sent out to help them to put in place services that are required. Shame on him! I note that that is £10 million over three years, which works out as a paltry £33 per person per year. That means no specialist clinics, no specialist dedicated pathways and little support for Scots with long Covid.
In England, at least £210 million has been announced for long Covid clinics, services for children and money for GPs to help with diagnosis. In Wales, dedicated clinical pathways were resourced more than a year ago with £5 million, and another £5 million is being provided now—that is £10 million for a country with a population that is half the size of ours. Why is the scale of the SNP’s ambition so much smaller?
On almost every issue, the SNP claims that it is the UK Government that prevents it from acting. The reality is the opposite. Health is fully devolved, so it is not that the Scottish Government cannot act but that it simply will not act at the pace and scale that is required.
The Government talks about joined-up treatment pathways, yet, in March, a Long Covid Scotland survey found that patients struggled to get their symptoms investigated. Heart and lung problems are associated with long Covid, but only one in four people said that they had been referred to a cardiologist or respiratory clinic. Only one in 20 people said that they had been referred to neurology, despite cognitive impairment and brain fog being among the most commonly reported symptoms. When patients were seen by a secondary service, they often reported having only one appointment, with no follow-up treatment.
The Government argues that tackling the issue requires a holistic approach, but, when one health board put in an evidence-based bid to access funding to deliver such an approach, it was told that its proposals would cost more than the Scottish Government was willing to give.
The SNP is simply not serious about helping people with long Covid to recover. At the moment, Government policy seems to be that we have to live with community transmission of Covid. However, as people catch Covid again and again, despite being vaccinated, more people are getting long Covid. That is true for children, too. Unless action is taken, such as improving air quality in schools—using high-efficiency particulate air filters rather than slicing the bottom off classroom doors—more children will be infected and more will end up with long Covid.
There has been a lack of action on long Covid research. Where is the quality paediatric research? Where is the research on antivirals or prophylactics? There is much more that the Government needs to do.
I turn to employment. Long Covid Scotland carried out an employment survey in March. It discovered that the condition had a profound effect on people being able to work. Some have managed to return to work, some are at work but on reduced hours, and some have not been able to return at all. Employers are struggling to understand, they are not making reasonable adjustments and some are insisting that staff return to work when they are not able to do so. Some people are on full pay, some are on reduced pay and some have lost their jobs completely.
That is especially frustrating for front-line workers who put themselves in danger, caught Covid, now have long Covid, and are being threatened with no pay if they do not return to work while they are still really ill. There is an urgent need for occupational health service advice and support for employers and employees. It is available in major public and private sector bodies, but it is not the case everywhere.
I will close with words from a key worker.
“I worked on the front line during the pandemic, with very little PPE. I just feel discarded. I gave my health to help others, and now I am just a number.”
The voices of the 151,000 who are suffering with long Covid can no longer be ignored. It is high time that long Covid is met with the gravity and urgency that it deserves.
I move amendment S6M-04472.1, to leave out from “recognises the role” to end and insert
“regrets the Scottish Government’s complete lack of urgency in delivering its £10 million Long COVID Support Fund, which was announced in September 2021, with nothing allocated before 1 April 2022; further regrets that no network of specialist long COVID clinics or specialist clinical pathways have been established for individuals recovering from the virus and living with recurring symptoms, in contrast to the steps taken in other parts of the UK; notes the Scottish Government’s latest announcement, but recognises that it falls short of what is required, and calls on it to take immediate steps to increase and roll out funding to NHS boards, working in partnership with local authorities, to ensure that people living with long COVID are accessing the right support and treatment; recognises the importance of developing services in partnership with those living with long COVID, such as Long COVID Scotland; calls on the Scottish Government to ensure that everyone experiencing long COVID is able to access appropriate occupational health support to enable them to return to employment, and considers that further clinical research will improve understanding of the long-term effects of COVID-19 and identify effective treatments.”15:25
Finally and belatedly, we debate this devastating condition in Government time. It is shameful that the SNP-Green coalition has made sufferers wait this long.
Long Covid was first recognised more than 18 months ago, as we have heard several times. It affects more than 150,000 Scots and that figure is rising. It has been characterised as possibly the biggest mass disabling event since the first world war, but the Government’s progress on it has been utterly glacial.
Long Covid is insidious, debilitating and widespread. It manifests in any combination of hundreds of symptoms, including air hunger, diarrhoea, muscle spasms, brain fog and chronic fatigue. It ruins livelihoods and it hobbles lives.
Until now, sufferers have been deprived of a voice in the proceedings of the Parliament. Today, they speak through those of us, such as me, Jackie Baillie and Dr Sandesh Gulhane who, from the Opposition benches, have dragged the Government to this point. Today we speak for sufferers such as Anna, who, at just eight years old, has had her education and her childhood ruined by long Covid. When asked by her mum Helen Goss, one of the founders of Long Covid Kids, to describe her condition to the first meeting of the long Covid cross-party group in the Parliament, she did so using just three words: “I hate it”.
Anna is just one of more than 10,000 Scottish children who are battling the condition and who seldom get the attention that they deserve.
I speak today for Stuart, my constituent, who is with us in the public gallery. He is a man of an age with me. He had his whole career before him but now cannot be sure whether he will have the strength to leave the house on any given day. Even now, despite the belated recognition in the remarks of the cabinet secretary, each of those people, and the 150,000 people like them, would be better off moving to England where there are long Covid clinics, care pathways and dedicated research trials.
On this matter, the Government has been woeful. Only after considerable pressure did the cabinet secretary announce £10 million for long Covid in September last year. Until this month, however, not even a penny of that money had been allocated.
Prior to that point, and at every time since, long Covid has only ever been raised in the chamber during Opposition time. In November, I led the first parliamentary debate on the matter. In January, my colleague Beatrice Wishart asked the Government to provide an update on the impact of long Covid, and she was told it would perhaps be discussed as an option at the bureau. In February, I highlighted to the First Minister that fewer than 1 per cent of long Covid sufferers had been referred to the Chest, Heart & Stroke Scotland support service. She told me that there was no need to intervene. In March, Jackie Baillie, Sandesh Gulhane and I pressed the First Minister on why none of the £10 million had been allocated to the long Covid support fund, or had even been spent. She said that the allocation would be made in the following weeks, but weeks and weeks have passed.
The weeks and months have passed and the SNP-Green coalition’s approach to this awful condition is one of manifest disinterest. To add insult to injury, neither party could be bothered to send a representative to the national long Covid hustings ahead of the council elections.
I say to the Government, both SNP and Green, long Covid sufferers see you and they will find you out. The announcement that £3 million will be spent this year is eight months too late. It is wholly unequal to the challenge and it will not touch the sides, but that is what we have come to expect from the Government when the main resource that it has made available to sufferers during these past two years has been the Chest Heart & Stroke Scotland support line.
Make no mistake—that is a valuable service for those long Covid sufferers who reach it. It offers them a safe way of speaking to their advice line nurses and provides wider support through the long Covid patient support group. I want to make it clear that my frustration about the lack of progress is not about the Chest Heart & Stroke Scotland service, but that fewer than 1 per cent of long Covid patients have been referred to it. The First Minister might believe that there is no good reason to intervene, but I can assure her that there absolutely is. There is currently no primary care pathway to the service, which means that when someone with long Covid visits their GP, it is unlikely that they will be referred to the service automatically. They might be lucky enough to have a GP who is aware of the support line and encourages them to call it, but many will not be.
In England, by contrast, people who visit their GP about long Covid can be referred to a post-Covid clinic, where they can be assessed by a doctor, a nurse or a physiotherapist. The Government may say that those clinics do not always get the best feedback, but at least patients in England have the option of using them. That option is not available here. As a result, Scottish sufferers are being left far behind and are not getting the help that they need.
The Scottish Government must recognise the enormity of the public health disaster that the long Covid situation represents. The cabinet secretary must start listening. He must listen to Chest Heart & Stroke Scotland, which has told ministers that an integrated automatic referral system needs to be put in place; he must listen to Long Covid Scotland and the other third sector organisations that are calling for a human rights-based approach to provision; and he must listen to long Covid sufferers such as Stuart and eight-year-old Anna, who are crying out for him to take account of their experience and to act.
When Scotland’s pandemic story is written, the tragedy of that story will undoubtedly be found in our care homes, but the scandal of that tale will be told in the Government’s indifference to Scotland’s long Covid sufferers.
I move amendment S6M-04472.2, to insert at end:
“; recognises the work of Chest Heart and Stroke Scotland in operating the vital long COVID support service; regrets that less than 1% of people with long COVID have been referred to the service, and urges the Scottish Government to take immediate action to expand the pathways to support, including enabling GPs to refer to the long COVID support service automatically.”
We move to the open debate.15:31
I very much welcome the Scottish Government’s recognition of the impact of long Covid and its commitment to help people who are suffering from that debilitating condition.
The National Institute for Health and Care Excellence has pointed out that post-Covid-19 syndrome is an emergent condition and has made recommendations for further research on long Covid in numerous areas. Its guidance is continuously reviewed and updated as new evidence comes to light. It notes that the condition has a wide-ranging array of symptoms, the most commonly reported of which, as has been stated, include fatigue, breathlessness and brain fog.
Therefore, it is right that the Scottish Government is not suggesting that a one-size-fits-all approach be taken but is instead supporting a holistic, patient-centred assessment of need and a range of approaches to treatment.
I have heard several Government members say that a one-size-fits-all approach will not work, and that is right, but does Evelyn Tweed not recognise that, up until this point, what we have had from the Government has been a case of no size fits all?
I do not agree, and I will come on to say why.
The symptoms can be life changing, as Angela, a constituent of mine, told me. She said:
“Last year I was leading kayaking trips and hill walks, and now I can’t get to the shop and back.”
“My employer has been understanding, I’ve had a phased return to work doing half days in the office instead of out on site. But the reality is that if things haven’t drastically improved in the next 5 months, then it’s likely I could lose this job.”
I was disappointed to hear that Angela had not been referred to the excellent NHS Forth Valley REACH—reablement at home service—rehabilitation teams, which provide advice, treatment and support to local people who are recovering from Covid-19 in the community and at home.
As well as the severe medical impact on the individual, the adverse effects on society and the economy should not be overlooked. The Royal College of Nursing reports that people who work in health and social care are significantly more likely than the wider population to report having long-term sickness as a result of Covid, but that is not the only sector that is affected.
Earlier this year, the Chartered Institute of Personnel and Development surveyed 804 organisations representing more than 4 million employees. The survey found that a quarter of employers now include long Covid among their main causes of long-term sickness absence. It further noted that only a quarter of organisations provide training or guidance for line managers on how to support people to stay at work while managing health conditions and that less than a fifth provide any guidance for employees.
In response, the CIPD is calling on organisations to urgently review their health and wellbeing strategies and to ensure that they are providing effective support for those with long Covid. We must recognise that each individual’s experience is completely different. I encourage all employers to read the CIPD’s report and recommendations.
I appreciate that there have been calls from some quarters for the establishment of long Covid clinics, following the model adopted by some NHS trusts in England. There is the potential for all health boards in Scotland to use that model. However, I understand that many patients in England are waiting many months to go to those clinics. I also understand that, if replicated in Scotland, one-stop clinics could take precious resources from other parts of the health service.
We need a system that offers long Covid sufferers quick access to a range of services, depending on their particular needs, and that is flexible enough to develop and change as our research and understanding improve. I believe that the Scottish Government is supporting health boards across Scotland to do that by augmenting existing services with £10 million of funding. I am delighted by the additional funding that has been discussed today.
From my work on the Health, Social Care and Sport Committee, I am also aware that the cabinet secretary regularly meets stakeholders, particularly those with experience of long Covid. I am confident that lived experience will be at the heart of policy making.
I note that the Health and Social Care Alliance Scotland will, like me, welcome the Scottish Government’s commitment to a person-centred approach to long Covid care. Keeping people like my constituent Angela, who have lived experience, at the centre of policy will ensure that we get that right. Let us help all those who are suffering from long Covid to get their lives back.15:37
I am pleased to have the opportunity to speak in the debate. It has taken the Scottish Government too long to recognise, document and respond to long Covid, on the back of a Covid-19 pandemic that impacted on so many aspects of our lives.
In March 2020, when the First Minister announced the first lockdown, with the support of all parties, those of us who were in the chamber at the time knew that it was coming but were still pretty shell-shocked. It was hard to imagine shutting down a country. That decision was based on the best epidemiological modelling available to the Government at the time, and we went into lockdown.
We always said that we were “following the science”, to assure the public that there was method in the decisions that were being made with the support of Parliament. Incidentally, the phrase “following the science” was never properly explained. The science continued—and continues—to evolve. For example, the First Minister said on television that there was no evidence that mask wearing would be effective, but we now know that evidence emerged to the contrary and that that position changed. The lack of explanation about what “following the science” meant made it more difficult to take the public with us.
We did not realise at the time that, although the results of that modelling were being implemented, there was no modelling of the unintended consequences or harms that might come from that lockdown. We now know that those were significant. That is where the division between the Government and other parties began. I have asked many times in the chamber, and in the COVID-19 Recovery Committee, how the Government is responding to those growing issues or is even gathering data on those problems. The answer always spins back to tackling Covid. Tackling the health issues directly associated with Covid did, of course, have to be front and centre, but not to the exclusion of other issues.
In recovery from Covid and its effects, the gathering and analysis of data is absolutely crucial. We needed a system that compared the model to the outcomes of its implementation, in real time, so that that modelling could change, adapt to reality and afford us the most informed pathway—an effective information technology system that could gather all relevant data and inform science, and therefore the Scottish Government, on the next steps and arising issues.
We know the impact on cancer care, elective surgery and chronic pain, all of which will take years to recover, and we now have long Covid. As I have said, the Scottish Government has been too slow to react and to gather the data that is required to make informed decisions at the pace that is required.
It is estimated that 151,000 people in Scotland have long Covid. As we have heard, the effects on individuals and their quality of life can be devastating, and there is, as yet, no treatment pathway for those 151,000 patients. Once again, we are behind the curve in comparison with other parts of the UK. Why did we not at least follow their data and plans while we established our own?
Does Brian Whittle accept that there is a mountain of evidence that long Covid clinics are inadequate, that they are ineffective and that they simply delay even further the treatment that somebody requires? If he is not sure of that, will he at least accept that I will offer him that evidence, in writing, after the debate? A mounting body of evidence—qualitative data, including from a Westminster all-party group—suggests that long Covid clinics are inadequate.
As I am about to go on to tell the cabinet secretary, what I am highlighting is not a new problem for the Scottish Government. Prior to the pandemic, Scotland was already behind the curve in developing an IT system that allowed the gathering and free flow of information.
In the previous session, as the cabinet secretary is aware, I raised that issue many times and with various witnesses in the Health and Sport Committee. Overwhelmingly, they agreed that a system in which communication and collaboration were enabled across all health boards, primary and secondary healthcare, pharmacies and the care system would allow for much more efficient responses.
In answer to your question, cabinet secretary, I ask you to read the report “Technology and innovation in health and social care”, which was published by the Health and Sport Committee on 1 February 2018. This is the key to your intervention on how we gather and access data:
“We note a disconnect between Scottish Government strategies and local delivery and unwanted variation between NHS boards ... We also recommend the Scottish Government takes a ‘once for Scotland’ approach to the implementation of its forthcoming Digital Health and Social Care Strategy.”
The interoperability of IT systems is essential to the achievement of the fundamentals of the Scottish Government’s draft vision. You are asking me to take data from elsewhere—
Please speak through the chair, Mr Whittle.
Sorry, Presiding Officer.
When we agreed to carry out the inquiry, we thought that we might be investigating ways of modernising the health and social care sector through the use of modern and ground-breaking technology and innovative and fresh ways of working. We did not expect to hear of a culture that was reluctant to adapt to new ways of working, in which innovation was not encouraged and in which a heavily outdated IT system still created major barriers.
In Scotland, we are way behind in gathering and utilising data and in having an IT system that has interoperability across all data streams. That the Scottish Government is slow to respond to long Covid is a direct result of that long-standing issue. I know that the cabinet secretary shares my interest in that area. In closing, I ask him to make that a priority in our recovery from Covid, including long Covid, because data analysis is a main weapon. We must do better in our endeavour to recover from the pandemic and its effects—and that must include long Covid.15:44
I welcome the opportunity to speak in this debate on long Covid. We have heard from more and more Covid-19 survivors that the impact of the virus lasts beyond the first few weeks of immediate symptoms. For many people, it lasts more than a year. For some patients, Covid-19 has a long-term and far-reaching impact on their daily lives, as we have heard in the debate. It impacts on them physically, emotionally and cognitively. The cabinet secretary and Evelyn Tweed both described symptoms of post-Covid syndrome, which is now called long Covid.
As well as the respiratory complications, I am interested in the cardiovascular and coagulation complications, information about which is now being published. The BMJ has noted a spectrum of cardiovascular complications: sinus tachycardia, hypertension, various arrhythmias, myocardial ischemia, acute myocarditis and heart failure, pulmonary thromboembolism and right ventricular dysfunction as well as left ventricular hypertrophy. The symptoms that I have just mentioned serve to show that Covid and, indeed, long Covid can have a serious impact on a person’s physical health and that it is a complex condition.
The Conservatives’ amendment refers to the need for long Covid clinics. NHS England states that its long Covid clinics
“bring together doctors, nurses, physiotherapists and occupational therapists to offer both physical and psychological assessments and refer patients to the right treatment and rehabilitation services.”
The clinics, which are largely virtual, signpost people to the correct specialist service. The Scottish Government’s paper on its long Covid service, which is backed up by £10 million of investment—the same amount of investment that has been provided in England—states:
“We recognise and acknowledge the impact that long COVID can have on the health and wellbeing of those affected. We are committed to ensuring that every person with long COVID is supported with access to the care they need, in a setting that is as close to their home as possible.”
The long Covid service sets out support to ensure that, when someone presents at primary care with long Covid, they can access the services that they need the most.
There is also a really useful Scottish intercollegiate guidelines network booklet for patients—I found it really helpful, too—that helps to explain what support is available in Scotland.
As other speakers have highlighted, the symptoms of long Covid are complex. Blood tests and multidisciplinary team assessments and interventions are required to diagnose, for example, left ventricular hypertrophy or complex clotting issues that might be part of long Covid presentation.
The approaches of the Scottish NHS and NHS England are virtually identical. It is important that we do not downplay the approach that is being taken here in Scotland. Scotland does offer people support. The Scottish Government is supporting health boards to provide a flexible, tailored approach that meets each health board’s demographics in rural and urban areas.
I am grateful to Emma Harper for taking an intervention. If the Scottish Government is, in essence, reflecting and mirroring what is happening down south, she will presumably disagree with the cabinet secretary, who said that, down south, the approach is not working.
I did not say that we are mirroring the approach in England. I said that the multidisciplinary team approach is already taking place in Scotland. We have a different NHS in Scotland; we manage our services slightly differently. We need to support what works better for our health boards in their areas.
Will the member take an intervention?
I do not think that I have time.
I am the Commonwealth Parliamentary Association gender champion in the Parliament, and I was really interested to read that women are very much impacted by long Covid. According to the Office for National Statistics, the prevalence of long Covid has been greatest among the female workforce. The workforce in social care is 85 per cent women, the workforce in education is 68 per cent women and the workforce in healthcare is 76 per cent women. Women work in those high-risk areas, and the likelihood that they will experience long Covid is higher. That creates challenges for women in the labour market.
We need to highlight the importance of the participation of employers in supporting those with long Covid. More than half of respondents—52 per cent—to a 2021 survey by the Trades Union Congress said that they had experienced some form of discrimination or disadvantage due to long Covid. One in six respondents—18 per cent—said that the amount of sick leave that they had taken had triggered absence or human resource processes. That is a concern. As I said, the workforce in social care, education and health is predominantly women, and we need to support them in any way that we can. It can be particularly difficult for them. Evidence from Close the Gap shows that women have been forced into using their sick leave entitlement to undertake additional unpaid care during the pandemic, especially during school and nursery closures.
I therefore ask the minister to comment, in closing, on whether the Scottish Government is undertaking any specific analysis of the link between long Covid and gender, and whether additional consideration is required in relation to those taking time off work due to long Covid.
It is important to recognise that people with long Covid in Scotland must be supported by a full range of NHS services, primary care teams and community-based rehabilitation services, with referrals to secondary care when necessary. We must look at emerging research from other countries, and partner with other nations, as we learn and evolve—we should apply examples of best practice to our approach to improving outcomes for those living with long Covid in Scotland. We are emerging from the pandemic and need to support our long Covid patients in order to give them the best service.15:50
I echo colleagues’ comments in welcoming the debate on long Covid. It is astonishing that it has taken so long for us to have this debate.
Long Covid is a new, devastating and disabling disease. It is an industrial disease. As many members have mentioned, the number of people suffering from long Covid is now in excess of 150,000, and they have seen their lives and livelihoods destroyed, consumed by the relentless and horrifically common symptoms, which include brain fog, breathlessness, extreme fatigue, constant dizziness and joint pain.
Given the Government’s rhetoric on supporting disabled people and seeking to give them dignity, fairness and the respect that they deserve, it is particularly distressing how little support long Covid sufferers are getting. I genuinely believe that the Government has strung them along with warm words. In September 2020, when we were just six months into the pandemic but it was clear that long Covid was the most devastating workplace disease that Scotland had seen in a generation, I asked the then Cabinet Secretary for Social Security and Older People whether the Government might use its powers on assistance for people with employment injuries to support workers who were suffering from the long-term effects of Covid-19. Her response was simply that the Government encourages people who have long-term Covid-19, when they experience symptoms, to access the benefits system as anyone else would. In other words, they should try a personal independence payment claim with the Department for Work and Pensions.
Many of us in the chamber probably know this very well, but if we asked a disabled person with a fluctuating condition about the prospect of applying for PIP, they would be able to say just how horrifying and cruel that process can be. They would tell us of their traumatic experiences; as we have heard many times in the chamber, the DWP systematically discounts their illnesses. That is borne out by the statistics. In January 2022, just 99 people in Scotland had been successful with a PIP claim for long Covid.
Making long Covid an industrial disease would mean that we could strip away that assessment process. We would be accepting the weight of evidence from those people and those occupations suffering the most. I have repeatedly asked the First Minister whether we should use the new powers of the Parliament in that regard. Even in 2020, it was clear that Covid was having a substantial impact on people who were catching it at their work. The testimonies that I relayed to the First Minister at the time included that of a retail worker who was in a coma for weeks and now has to walk with a stick, and that of a social care worker who also had to use a stick, never recovered their sense of taste and smell and had been referred to a respiratory clinic. Those are two of the many stories that I have heard that describe how key workers who looked after and protected us are now too unwell to return to the jobs that they love.
A survey in March by Long Covid Scotland—which I commend for its tireless campaigning on the issue—highlights the significant number of people who are unable to return to work or to their previous levels. Half are still off work and feeling judged for still being ill. Those who have returned feel that their return to work has negatively affected their symptoms.
The response from the Government is more empty words. I was given an undertaking that what the Government could and should do with regard to providing support would be looked at. That yielded a letter saying that the Government would defer to the UK Government’s industrial injuries advisory council, which, in turn, refused to recognise long Covid as a prescribed industrial disease. The Scottish Government took that position, even though the issue of employment injuries is fully devolved to the Scottish Parliament—dignity, fairness and respect, but not for someone with long Covid.
Colleagues across the chamber, particularly Opposition members who supported it, will know that I am pursuing a member’s bill to establish a Scottish advisory council to secure an employment injuries system that is fit for purpose in 21st-century Scotland. The genesis of that bill involved asking key workers whether long Covid should be thought of as an industrial disease. Given that many caught Covid at work while simply doing their job, and given that, in too many cases, the condition virtually destroyed their ability to return to work, the answer was an overwhelming yes.
Like many others, I would be delighted if the minister would close the debate by confirming that people with long Covid will be entitled to the Government’s employment injuries assistance. Putting the decisions in the hands of a statutory body, independent of Government, that can research and advise on the risks facing workers and has the energy to reshape the benefits system in order to support those workers is the only way that long Covid will be recognised as an industrial disease that many workers are enduring today.15:56
Long Covid has been discussed and questions have been asked about it at meetings of last session’s COVID-19 Committee and this session’s COVID-19 Recovery Committee, both of which I have been a member of. We have heard different titles being given to it, including post-Covid syndrome and post-Covid-19 condition, which is what the World Health Organization is calling it.
I know about the condition from my personal experience. My friend and his wife both caught Covid early on. She got it more seriously but recovered more quickly, while he continued to have problems with breathing for a number of months and said that he felt like he was never able to take a proper deep breath.
I read a The Guardian article that was a personal account of someone in England who had long Covid. It said that none of the 80 specialist clinics there is offering effective treatments. It seems clear that, although long Covid clinics might be part of the answer, they do not guarantee a better patient experience.
In preparing for today’s debate, my staff found a useful piece by the British Heart Foundation detailing some of the research around long Covid. For example, there is a three-year study involving data from 60,000 people to help define what long Covid is and improve the way that it is diagnosed. The study is trying to explain why some people get long Covid, the typical effects on a person’s health and ability to work, and the factors that affect recovery.
Other research that I understand is going on includes research into whether existing medicines, such as statins and anticoagulants, can help to prevent long Covid and relieve its effects. Another study, on long Covid in 11 to 17-year-olds, is attempting to identify symptoms in children and young people who were not treated in hospital. There are at least another 15 research projects across the UK, covering topics such as breathlessness, reduced ability to exercise and brain fog. However, in its briefing, the Royal College of Physicians of Edinburgh confirmed that there is no internationally agreed clinical definition of the condition or clear treatment pathway.
When we read those articles and realise the basic level of research that is going on, it strikes home how little we understand about long Covid and how it can be treated. Therefore, we need to accept that this is a long-term project. Of course, it is important for the 150,000 or so people with long Covid in Scotland, of whom perhaps one in six is so ill that day-to-day activities are substantially limited—in one study, half of the sufferers said that they are unable to return to work. They are urgently looking for treatment and cures. One previously very active person said to me:
“I have to get better.”
It is perhaps useful to think of the timeline around myalgic encephalomyelitis. I understand that ME was observed in Los Angeles in 1934 and was thought at first to be atypical polio. In 1946, it was called Icelandic disease, after appearing in Iceland; in 1956, it was mentioned in The Lancet; and, in 1984, it was called chronic fatigue syndrome. However, it is still not well understood today. If ME is anything to go by, we are not going to get quick answers concerning long Covid. It is certainly argued by some that research is not progressing fast enough.
I somewhat regret interrupting what sounds like a bit of a counsel of despair for the many people across Scotland who are suffering greatly at the moment, but what would John Mason say to the clinicians in my region who are astonished by the lack of resource that the Government is putting forward to allow them to develop new pathways and try to innovate? We cannot accept the kind of timeline that John Mason is laying out of decades to come.
I can give John Mason the time back.
Thanks very much, Presiding Officer.
The cabinet secretary largely answered that question by saying that treatment is going on. In fact, the friend whom I mentioned has had treatment. That is happening right now.
The member can call me pessimistic if he wants, but we had a very good meeting of the COVID-19 Recovery Committee this morning, which Mr Whittle attended. One of the points that the scientists made was that all Governments were too optimistic at the beginning. All Governments around the world said that we will get through it in a few weeks. Call me pessimistic, but I am trying to bring a little bit of realism. If we compare long Covid with ME—I accept that long Covid is not the same as ME—we see that the ME project has been a long-term one and there have not been easy answers. I do not believe that there are easy answers to long Covid.
However, as I was saying, we have to invest in research. I believe that the UK is spending £20 million or more, that Germany is spending perhaps €6.5 million, and that France is spending €2.2 million. I very much welcome the Scottish Government funding of £2.5 million. That is excellent.
Of course, whether or not we fully understand long Covid, we need to try to support as much as we can people who are suffering. Support in Mind Scotland emphasises that mental health is important, and the Health and Social Care Alliance Scotland reminds us of needs such as access to social care, social security—I refer to what Mr Griffin said—food, housing adaptations and mobility aids. Those things can and should be happening, even if we do not fully understand long Covid.
The motion indicates that there should be flexibility for health boards. That seems right, as what works for Glasgow might not work in the Highlands. We should not be pushing for an overcentralised approach. That flexibility could be about strengthening the co-ordination of existing services or establishing dedicated services, including long Covid clinics.
I note that the Royal College of Physicians of Edinburgh believes that supported self-management and long Covid one-stop clinics are
“worthy considerations as part of the long Covid puzzle”.
It also quoted NICE in recommending access to multidisciplinary services, which could be one-stop clinics, but it pointed out that long Covid services should not divert resources away from rehab services to the detriment of patients with other conditions. Therefore, I think that we need to be a little cautious about more specialist stand-alone facilities.
I note from the Health and Social Care Alliance Scotland briefing that it wants people to have
“equitable access to high standards of support ... wherever they live in Scotland.”
I think that I can live with a term such as “equitable access” as long as it does not mean rigid uniformity.
There is rightly an emphasis on people receiving good primary care and community-based support, although there are accounts of people having mixed experiences as they interact with their GPs about long Covid. Given what has already been said about the need for research, it is clear that we cannot expect GPs or other primary care providers to be experts on all aspects of long Covid.
The alliance has made the valid point that access to social security and other entitlements is often more difficult for people with energy-limited and fluctuating conditions. Therefore, we need to try to ensure that systems are in place to cope with that and adapt as we find out more.
You need to wind up, Mr Mason.
Okay. Thanks very much.
There is a lot of encouragement for us, especially those who are suffering from long Covid. A lot is happening right now by way of treatment, research and so on, and I believe that that will help us in the long run to understand better and find better treatments.
Thank you very much, Mr Mason. I am sure that colleagues will be as grateful as Mr Mason to know that we have a little time in hand. Therefore, if members take interventions, they should get the time back.16:04
The true extent of the impact of long Covid is still unknown, and it may remain so for some time. As we have heard, it has been estimated that around 100,000 people are living with long Covid in Scotland. However, that figure does not adequately capture the devastating impact of the condition on many of those affected. Long Covid can have a significant impact on the quality of life, and its effects range from fatigue and shortness of breath to brain fog, chest pain, sleep disturbance and other symptoms that we are still discovering. The variation of those symptoms means that people have had to fight for diagnosis and treatment.
In its briefing for the debate, the Royal College of Physicians of Edinburgh highlighted that there is still no internationally agreed clinical definition or clear treatment pathway for long Covid and the evidence base for the condition is still developing. That presents a significant challenge for health services, and long Covid requires concerted, co-ordinated efforts to treat.
We must not underestimate the pressure that that will place on health services. Forward planning is essential. We should prioritise further research into long Covid, and I welcome the Government’s commitment to that. Such research must include the effects on children and young people and should be intersectional, as there is already evidence that certain groups are disproportionately affected by long Covid. Organisations such as the Health and Social Care Alliance and Long Covid Scotland have called for improved data collection on long Covid, so that we know exactly how many people have the condition, how they are being affected and who is most at risk.
Accurate, reliable data will enable us to design services that will properly meet the needs of people with long Covid, many of whom will require long-term care. Data published in The Lancet shows that 43.5 per cent of people had at least one complication after having acute Covid. Supporting people to self-manage their symptoms where that is appropriate is essential. A number of organisations have highlighted the need for patients as well as health and social care staff to be informed about how to find support if symptoms present.
In short, we need to ensure that people know what symptoms to look out for and where to go for help when they need it. I call on the Scottish Government to do all that it can to raise awareness in that regard.
We also need to raise awareness of the disproportionate impact of long Covid on certain groups of people. We know that the pandemic has not affected everyone equally. The most recent Office for National Statistics data release shows that long Covid is more prevalent among women, despite the fact that acute cases of Covid tend to be in men over the age of 50. Close the Gap has highlighted that women are more likely to be in occupations where there is an increased risk of developing long Covid, such as healthcare and education. Their concentration in low-paid, precarious work also makes them more likely to miss out on statutory sick pay.
There are wider impacts on people’s employment. A recent survey conducted by Long Covid Scotland of people’s experiences in employment revealed that 52 per cent of respondents were unable to return to work, and 72 per cent reported that their current work patterns were unsustainable.
I echo calls made by the Trades Union Congress and Close the Gap for the UK Government to urgently recognise long Covid as a disability under the Equality Act 2010 so that employers cannot legally discriminate against workers who have it. Those workers would then be entitled to adjustments to remove, reduce or prevent any disadvantages that they might face. No one who is experiencing long Covid should be denied reasonable adjustments at work.
We need to take a holistic view of how people have been impacted by long Covid and provide wraparound support. People have been physically affected, and that may have knock-on effects on their employment, housing and education as well as their mental health and their need to access health and social care.
In its briefing for the debate, the alliance rightly highlighted the impact of long Covid on mental health. Physical symptoms combined with potential issues around employment, financial worries and struggles to gain access to treatment will all take their toll on people’s emotional and mental wellbeing; studies have already demonstrated that. It is therefore essential that mental health support is considered alongside any treatment for physical symptoms.
Long Covid is a new condition and research into its effects is still in its infancy. It is therefore vital that we allow clinicians the time that they need to undertake their own learning. We all know the extraordinary pressure that health services are under at the moment and the huge demands that are being made on clinicians’ time, but clinicians must have protected learning time to ensure that they can deliver the best care to their patients.
Primary care will play a vital role in the identification of long Covid, and I am aware that the Royal College of General Practitioners has long been calling for protected learning time to be built into the working week of GPs. Given that this is a new condition, it is vital that we listen to the people who have long Covid. Unfortunately, many report having to fight for their voice to be heard or for their symptoms to be recognised.
We need to take a person-centred, rights-based approach that enables people with long Covid to feed into and shape the design of support services. I was glad to hear some of those points reflected in the cabinet secretary’s speech. I would welcome any further comments on how the Government plans to engage with people and reflect lived experience.
The impact of the pandemic will still be felt for generations to come, not least by those with long Covid. Any recovery plans must include support and care for people with long Covid, to be provided now and for as long as they need it in the future.16:09
Before I was elected to the Parliament, and in the early stages of my career, I was a journalist. I used to sit in galleries much like the one that we have in the Parliament, looking at the demeanour of ministers and trying to work out what adjectives I might use to describe it. Today, I would say: sheepish and squirming. We have waited months for a debate and an announcement from the cabinet secretary about long Covid, and it simply was not worth the wait. Promises have been recycled, money has been reannounced, past pledges have simply been polished up again, and there has been a shocking level of complacency.
Too many people who have fought to be heard and are suffering from long Covid are suffering the consequences, and are waiting for answers and solutions from the Government. SNP ministers must now finally get on top of the long Covid crisis, because the condition is affecting nearly three in every 100 Scots. If the cabinet secretary does not act, the situation will spiral out of control and will have very serious knock-on consequences for other services in Scotland’s NHS.
Last year in our policy paper, the Conservative Party called for the creation of long Covid clinics and a co-ordinated approach to the disease across health and social care in Scotland. The findings of our report were supported across the sector, and by third sector organisations such as Long Covid Scotland, Chest Heart & Stroke Scotland, Support in Mind Scotland and the Royal College of Physicians of Edinburgh. However, one year on, there are still no long Covid clinics, and there is still no co-ordinated response to the disease in Scotland.
The cabinet secretary said in his statement that long Covid clinics do not work; however, in the motion that he put to the Parliament, he said that
“The Parliament ... recognises the role of NHS boards ... to design models of care ... including long COVID clinics”,
so it is in his own motion.
The important point that the member has omitted—deliberately, I suspect—is that I was referring to the mounting evidence that long Covid clinics in England, as they are designed at the moment, are not working on many occasions. That is not just something that I said; the member’s colleague, Dr Gulhane, said that there seemed to be evidence that, in some cases, long Covid clinics were ineffective. Does Craig Hoy accept that there is mounting evidence that some of the long Covid clinics in England are simply not working?
I accept that the cabinet secretary has an army of spin doctors, civil servants and parliamentary draftsmen, and if he cannot submit a motion to the Parliament that conveys that point, that is his problem, not ours.
The cabinet secretary wants to talk about England, so let us compare the situation in Scotland and England. In Scotland, people with long Covid are 20 per cent more likely to be severely affected by disease in their day-to-day life, compared to those who live elsewhere in the UK. In England, there are 90 specialist long Covid clinics but, in Scotland, there are none—zilch, zero. In England, more than £224 million has been committed to the development and delivery of long Covid services but, in Scotland, the best that the SNP can deliver is £10 million. It is not that the Scottish Government has no money, and the cabinet secretary knows that. There is £3 million for the next year, which simply will not touch the sides. Perhaps the Government, or the cabinet secretary when he sums up, may now be able to say how much money has been paid out so far and what it has been used for.
Sufferers of long Covid feel unsupported and undermined by SNP ministers. Take a constituent from Dunbar who suffers from long Covid, ME and postural orthostatic tachycardia syndrome, or POTS. She told me:
“I get POTS-related paralysis episodes, and those have become much more frequent since having Covid-19. With that combination of issues, I am almost entirely housebound and use a wheelchair to get around my house.”
“Much of the oppression reported by people with chronic illness takes the form of invalidation and disbelief of their impairment, and I hope that long Covid will mark a change in that culture—the point in time when we start to take energy impairment seriously.”
The repeated and often very passionate pleas from those who are suffering from long Covid are, in effect, being ignored by the Government. For more than a year, ministers have reverted to type. Mr Yousaf has done so again: we have dither, not direction; delay, not decision; and excuses, not action.
Did Mr Hoy hear the cabinet secretary earlier when he said that he had direct experience with people who have lived experience of long Covid? The cabinet secretary has already been meeting those people.
That is the story all along. He has been meeting people with lived experience and listening to them, but he has not been acting on what he hears. That condition is apparent throughout his Government.
The Government says that it does not want a one-size-fits-all approach, but any concrete approach would be welcome in order to start to relieve the isolation and the suffering that is felt by patients who are suffering from long Covid. There is currently no clear clinical pathway for those patients, and the Government has failed to deliver any meaningful support to the 150,000-plus people in Scotland who are living with the condition.
We should not forget that the number of people who have been suffering with symptoms for more than a year has doubled in six months. That shows that the problem is getting worse, and ministerial inaction only makes their suffering greater. It is time for ministers to end their false promises and to act, which is why I encourage colleagues to support the amendment in Dr Gulhane’s name.16:16
Long Covid is a crisis in Scotland and around the globe, and there is absolutely no hiding from that. It attacks people’s weaknesses and devastates lives. Physical symptoms can include chest pain, difficulty breathing, headaches, internal blisters, fatigue, brain fog, frustration, grief, anxiety and depression—the list goes on, and members have heard about plenty of other symptoms today. Some sufferers are unable to return to work or school, and they miss out on important family events. As if that is not scary enough, research suggests that long Covid can lead to psychiatric, neurological and inflammatory issues, and even an elevated risk of suicide.
However, we should not forget that individuals with long Covid are not the only ones who are suffering. Their families walk that path with them—they provide care and support, and often struggle with the uncertainty around whether normality will ever return for their loved ones.
We have heard about the huge variation in symptoms, and I welcome the Scottish Government’s holistic approach to research, treatment and policy, from education and social security to health and social care. I warmly welcome today’s news of the £320,000 investment in NHS Lanarkshire to support a multidisciplinary Covid rehabilitation team, and I look forward to seeing the detail of that access point for supported self-management.
Today, I will focus on research and the lived experience of friends and family in my Uddingston and Bellshill constituency, before touching on workplace culture and how we treat people with long-term illnesses and disabilities. I give my sincere thanks to those who have taken the time to tell me about their personal experiences.
Research is the key to improving our understanding of the effects of long Covid on people’s physical and mental health, and to identifying effective treatments. It is right that the Scottish Government contributes to the growing evidence base across the UK and internationally, and the £2.5 million that is being provided to support nine research projects is very much needed.
There is some disagreement about the value of making comparisons between long Covid and other post-viral conditions such as ME and chronic fatigue syndrome, or CFS as it is often known. However, one friend to whom I spoke yesterday caught Covid before testing was available, and before long Covid was even heard of. She told me that, looking back, she felt really quite lucky to have been diagnosed with CFS following Covid, because she was advised early on to incorporate something called pacing as a treatment.
Pacing is an activity management strategy that is designed to help ME and CFS patients to limit the number and severity of their relapses while remaining as active as possible. My friend has gone from swimming 100 laps in the pool to swimming just four laps once a week, and from walking 20 miles to sometimes struggling with 500m. Although pacing can be frustrating, it has saved her from pushing beyond the limits, and it still does so two years down the line.
I am told that one of the major issues for people who are living with long Covid is the endless cycle of going for tests, only to be told over and over again that everything looks okay. People talked about the frustration and helplessness that they felt, and the variable impact on their physical and mental health. Long Covid sufferers have told me again and again that we must empower researchers to investigate long Covid alongside similar post-viral conditions, so that we can make connections between conditions and draw on existing treatments while developing new ones, too, because effective treatments improve lives.
It is paramount that lived experience remains at the centre of policies, practices and decision making—I am sure that that is not popular with Mr Hoy—about the development of services and supporting people. “Nothing about us without us” is such a simple and powerful principle. We must embed it in policy, practice and the development of services for long Covid, as we have with other things.
We know that Covid targets the marginalised and disadvantaged. We must listen to the experiences of the young and the old, and of women, ethnic minorities and people from disadvantaged areas. Too many people are hidden, and we must reach right into those communities to make sure that we hear those voices.
It is telling that the 2021 NASUWT wellbeing at work survey found that 17 per cent of respondents in Scotland have not disclosed long Covid to their employer. That brings me to my final point. At times, our culture can exploit and damage people who are living with long-term conditions and disabilities. Since the beginning of the pandemic, some have pushed the narrative that we should just get back to work, perhaps putting profit before people.
However, here in Scotland, our Government’s fair work policy promotes fairer work practices and really encourages flexibility. When my friend’s employer stepped up to the mark to support full-time home working, she was able to continue the job that she loves. I am absolutely sure that her work will pay her employer back tenfold.
Embedded in our culture is a belief that, when a bad day comes along, we must make up for it somehow by putting in extra the next day. GPs advise against that and tell long Covid sufferers to prioritise doing three things: to rest, to pace and to take time. Instead of trying to make up time, we must learn that it is okay—and indeed good—to follow that advice to protect our mental and physical health and keep us functioning at our best.
At this critical juncture, we must continue to invest in research so as to understand and develop treatments for long Covid. We must put lived experience at the centre of all that we do. We must also recognise that crisis brings opportunities. Let us take this opportunity to look at the bigger picture and encourage workers and employers to protect and empower workers. As we recover from Covid and face the biggest cost of living crisis in over 40 years, let us stay focused on what matters most: our collective health and wellbeing.16:22
For many of us, life is beginning to feel more like it did pre-pandemic. We are living in a new normal but, for most of us, it looks quite like the normal that we knew before.
For those who are living with long Covid, however, life could not be more different. The new normal for them is terrifying. Life after the pandemic has become one of constantly feeling exhausted and in pain, or in some cases experiencing brain fog and problems with memory, chest pain or heart palpitations, and insomnia. For the estimated 100,000 people in Scotland who are living with long Covid, life is immeasurably different. Like many people who acquire impairments, they are having to make significant changes to the way they live their lives. For them, the pandemic has meant losing various degrees of their independence, and it has left some struggling to return to work.
Like all health conditions, long Covid affects people differently and unequally. Some 93,000 workers believe that they caught Covid at work. Women were overwhelmingly focused in jobs that had high exposure to Covid, in sectors such as social care and teaching and education, and they are far more likely to suffer from long Covid as a result. Those sectors and the women in them kept many of us going through the pandemic. They put their own lives on the line to save ours. Women are more likely to work in low-paid and precarious jobs, and they hold 70 per cent of roles that are not eligible for sick pay. They are finding that employers are not doing enough to meet their needs and that they cannot afford to be off work because, despite their invaluable, selfless contributions to help others, they are not entitled to support now. The Scottish Government must do all that it can to ensure that it acts fast, so that they have the help and support that they need today.
People with long Covid are battling two viruses—long Covid and inequality—in a way that they might never had had to before. People should not have to fight day in, day out just to get by or for their rights. It does not have to be this way. Both Governments must use every lever that they have to meet the health and care needs, and protect the rights, of people with long Covid. They must encourage businesses and employers, particularly those that are carrying out publicly funded contracts, to recognise long Covid as a disabling condition. Employers should do that not because the law could in fact be interpreted to recognise it as such, although I will clarify for the record and for the benefit of people with long Covid that, even though the Equality and Human Rights Commission has perhaps been less than clear on it, if a condition is not classified automatically as a disability under the Equality Act 2010, that does not mean that it is not considered a disability under that law, or that therefore people with the condition do not have rights. People should assert those rights, and we in this place have a duty to help people uphold them. Employers should not be recognising long Covid as a disabling condition simply because of the legal case; they must support people with long Covid because they have a moral obligation to provide them with the support that they need and because doing so will allow those people to live up to their full potential.
I would also like to see the Scottish Government encourage the use of the Trades Union Congress’s reasonable adjustments disability passport scheme, which recognises fluctuating conditions such as long Covid. The scheme means that disabled people have to explain their needs only once and not every time that their role or their line manager changes. Recognising that would remove a barrier to people receiving the proper support that they need. I would welcome hearing the Government’s view on that in the cabinet secretary’s closing remarks. I thank the TUC and Close the Gap for their hard work on campaigning on the issue and for their important research.
We should use the Parliament’s powers to do all that we can. That should include supporting my colleague Mark Griffin’s proposal for a Scottish employment injuries advisory council bill, which would lay the framework for a new, independent public body that would have substantial authority to shape and remodel industrial injuries benefits. It would also ensure that people who have been disabled as a result of long Covid could access the same compensation schemes as workers who have experienced other illnesses as a result of their employment, such as asbestos-related conditions, hearing loss and chronic obstructive pulmonary disease. For too long, people with similar impairments have had to fight to be recognised as disabled. They have battled against discrimination in order to have their rights realised. Let us learn from their fight and ensure that people with long Covid are protected against it and also protected against discrimination and the mistakes of the past. We must ensure that employers understand that they could have a duty to make reasonable adjustments to remove, reduce or prevent any disadvantage for workers with long Covid.
I return to the point on research and data on which I had an exchange with the cabinet secretary earlier in the debate. I again thank the TUC and Close the Gap for their work in this area. As long Covid is a new and emerging condition, there is much that we still do not know about it, but there is certainly far more to do to identify the reality. We do not know the extent to which the condition disproportionately affects some groups more than others. I appreciate the cabinet secretary’s earlier comments, and I hope that we will start work as soon as possible to obtain such data. Collecting it will be crucial to ensuring that any decisions support people in the way that is needed and that we address inequality. The more information we have, the better our policy will be.
People have been left suffering, with no answers and no dedicated healthcare. The Government must do all that it can to ensure that people with long Covid are recognised as disabled people, get the support that they need—including at work—and can access social security quickly through its speeding up their access to adult disability payment. Sufferers have fought for their rights for too long, and they have also fought through their illness. It is the Government’s duty to act quickly. People with long Covid cannot be left to fight this battle on their own for any longer.
We move to closing speeches.16:27
Three weeks ago, the Liberal Democrats got our business day. We get roughly one a year, so it is actually quite a celestial alignment for us. Had we not had sight of the Government’s intentions, there is no doubt in my mind that we would have used that very precious single day to debate long Covid. However, because the SNP Government had indicated that it would finally use Government time for a debate on long Covid on the following day, we decided to focus on other things.
After our business was submitted and the parliamentary agenda was set, the Government pulled its debate. That was a craven example of the Government once again dodging scrutiny on an exposed flank, because it occurred to the Government that it literally had nothing to say. Three weeks on, not much has changed; long Covid is an exposed flank.
There was much hope attached to that aborted debate, as there was to the debate today, but it has been thin gruel. Jackie Baillie was right to flush out the pretence that the Government was attaching to the £3 million, talking as though it was some kind of new money when it is in fact a rebadge of the first iteration.
The cabinet secretary tried to strike a conciliatory tone, but in reality he, like many Government party members, just provided a précis, a list and a summary of the problems as we find them, and they were very thin on solutions. That was rightly and succinctly identified by Dr Gulhane.
I am grateful that Dr Gulhane and the cabinet secretary, in their intervention exchange during Dr Gulhane’s speech, set out that future long Covid sufferers who do not have a positive Covid test result in their medical records will not face the same battle for belief and support as sufferers in the first wave did, and in some cases still do. I will remind the Government of that commitment.
We heard a lot of personal stories. Several came from Jackie Baillie’s excellent speech. She was right to identify the cynical choreography of a Government rushing out letters to sufferers on the very day of this debate. I associate myself with Jackie Baillie’s remarks about employment and offer my support to Mark Griffin with his forthcoming member’s bill on making long Covid an industrial injury.
Sufferers need action; we need action, but there is not much encouragement for sufferers in the words of Government members. I have a lot of respect for Evelyn Tweed, but to suggest that funding the creation of long Covid clinics somehow robs Peter to pay Paul and deprives the health service of funds elsewhere betrays a fundamental lack of understanding of the scale of this public health disaster.
Edward Duncan, professor of applied health research at the University of Stirling, said:
“There is good clinical reasoning for arguing that investing in existing services and supporting them to deliver rehabilitation is better than having a bespoke centre.”
Does the member agree with that, and can he tell me which specific treatments are being provided in NHS England’s long Covid clinics that are not already available to people in Scotland?
The minister did a good job of reiterating the point that was made by Emma Harper, but if Emma Harper took my intervention, I would have pointed to the long Covid sufferers in the gallery who will show her the truth to that lie. They were all shaking their heads in disagreement at the misapprehension that the Government is creating that these services are somehow already out there if you half close your eyes and know where to look—that is laughable. This is a public health disaster and its impact will be felt across our schools, economic activity and workforce.
I also found the cabinet secretary’s intervention on Brian Whittle astonishing. He sought to reiterate the point that the minister just made. They continually attempt to hinge their opposition to long Covid clinics—clinics that the long Covid community is crying out for. One suggested that focused, holistic, multidisciplinary support obtained in a one-stop stop will actually hinder their health outcomes; that is enraging.
That is the problem. The SNP’s back benchers have clearly overheated the long Covid Wikipedia page in preparation for this debate, but it is hard to imagine that many of them have actually spent time with sufferers or the groups that support them.
Will the member take an intervention?
I must make progress.
Indeed, it was many months from the group’s first request, and several embarrassing First Minister’s questions, before the cabinet secretary first met Long Covid Scotland.
The outlook for support remains bleak, and we have heard nothing to change that today. John Mason, unwittingly, did the job of those on the Opposition benches when he revealed his Government’s failure of sufferers of long-term conditions such as ME during its 15 years in office.
I am haunted by the words of eight-year-old Anna Goss, who, in describing her condition, said, “I hate it.” You can hear the anger and frustration of such a young life so badly restricted by a condition that no adult around her can fully explain, and for which she is not offered adequate support. Anna cannot wait for the amassing of data that Gillian Mackay described as a “prerequisite to support”. We can help her today, but Ms Mackay’s Government chooses not to.
What is more, we can protect children like Anna—or those who might become like her—not by cutting off the bottom of classroom doors but by installing high-efficiency particulate absorbing filters in every classroom in Scotland, which would clean the air and allow children and their teachers to breathe. If Government policy is to live with Covid, we have a duty to protect our children from what it can become.
It is clear from the factual and clinically informed speeches that have been prepared for SNP MSPs today that the Government understands the pathology of long Covid, but I am not persuaded that it understands the humanity or urgency of this awful condition.16:34
I welcome this opportunity to close the debate on behalf of Scottish Labour. I start by thanking all the people who have allowed us to share their stories, and those who have made the journey to the Scottish Parliament and are sitting in the gallery. I hope the Government will listen and react to the debate with some speed.
As other members have said, we have had to drag the Government to this point. After far too many delays, and despite long Covid being at the forefront of public debate, we have finally brought this crucial issue to the chamber. A debate on the topic was cancelled last month for, seemingly, no reason. All the while, the Parliament has been coming and going, yet the issue of long Covid has never been given the attention that it deserves. Let us hope that that ends today.
As we have heard from the debate so far, there is broad cross-party support for getting the situation sorted. Scottish Labour whole-heartedly welcomes that and hopes that we can get the next step in place.
For some people in Scotland, the Covid threat is dwindling, but for others its lasting consequences are part of their everyday lives. We must not forget that many of our families and friends are still suffering from the consequences of the past two years. In some cases, those consequences are drastic and life altering. Alex Cole-Hamilton put it vividly: it is a horrible disease. As Jackie Baillie and Alex Cole-Hamilton both said, children are suffering.
As many as 151,000 Scots are living with long Covid in one form or another, but their needs and concerns are rarely taken into account. The Government seems to avoid communicating with sufferers and support groups, and to avoid taking on board the points that they make. As many colleagues have noted, there have been a number of serious issues with the Government’s response to the emergence of long Covid; it only makes it worse for support groups and sufferers that they do not feel fully involved in decision making.
The £10 million long Covid support fund that was announced in September 2021 has yet to be fully delivered, which is a disservice to our hard-working NHS staff. Unlike other parts of the UK, we do not have a network of specialist clinics for people who are dealing with the symptoms of long Covid. There seems to be a reluctance even to consider the suggestion that we might learn good practice by looking at that.
There seems to be little or no occupational support for people who are suffering from long Covid to help them back into the workplace. I thank my colleague Mark Griffin for his comments on the importance of considering long Covid as an industrial injury—in particular, for our valued key workers. I look forward to the cabinet secretary responding to Mark’s comments.
We need answers as to why funds could not have been allocated directly to health boards in order to treat people who were already in pain much more quickly. We know that the money has not been allocated. Why were people who are suffering from long Covid not asked to play a much more active part in the design and implementation of plans? Why are we not properly considering the financial impact that the condition has on people who fall victim to it? I hope that the cabinet secretary can answer some of those questions, and I hope that he will respond to Emma Harper’s points about gender.
Those are serious considerations, yet most of the commitments that the cabinet secretary has made today are about the future and a vague long-term Covid plan. There is far too little detail about how we will help patients now. How will we help them? If we do not ensure that adequate measures are in place, there will be serious implications for our NHS, and the distress and discomfort of people who have long Covid will be extended.
Despite the under-50s being at lower risk of dying from Covid, there are high rates of complications from Covid across all age groups, including children. Long Covid is just one part of that.
Long Covid is a problem that we do not have a full grasp of yet, which is why it is so important that we develop expertise and ensure that health services and the scientific community work together in a co-ordinated manner. Although there is a broad willingness to do that, there is a serious lack of commitment and progress on it.
The reality of what Covid can do to a person—beyond the worst fate of all—is not discussed clearly in public life. The Government does not want it to be discussed openly. If the public were better informed about the potential consequences that arise from catching Covid, that would go a long way towards improving our ability to limit the virus.
Well-funded long-term research will improve our understanding of the lasting effects of Covid and help to identify effective treatments for all who suffer from it. Committing to such funding now will put Scotland at the forefront of that vital discussion, but it will not happen if we are seen as being behind the rest of Europe and unwilling to commit serious investment. Any future planning from the Government must respond to the immediate and long-term impacts of long Covid in Scotland, and not merely pay a measure of lip service.
To conclude, I say that positive steps are being considered here today, but is the cabinet secretary listening? Does the cabinet secretary really think that the long Covid support fund, which—as was mentioned by my colleague Jackie Baillie—equates to around £33 per person per year, is sufficient to tackle the problem? We all know that it is not, and that the issue is not being taken seriously enough by the Government.
Thank you, Ms Mochan. It now falls to Ms Webber and the minister to take us up to decision time. Sue Webber has a very generous seven minutes.16:40
Thank you, Deputy Presiding Officer. I welcome the chance to speak in this much-delayed debate. In the motion that is in front of us today there is absolutely nothing that could not have been presented to Parliament before 5 May.
The SNP Government is failing to treat long Covid with the seriousness that it deserves. SNP ministers must urgently get on top of long Covid now, before it spirals out of control and has serious knock-on consequences for other services in our NHS.
The Office for National Statistics estimates that 151,000 Scots are suffering with long Covid; that number is rising. Additionally, 64,000 Scots have been experiencing long Covid symptoms for more than a year, which is more than double the number who were suffering just six months ago. Also, 36,000 Scots are reporting that long Covid is having a significant impact on their daily activities. Mr Cole-Hamilton spoke about how debilitating it is and how it is ruining people’s livelihoods. Huge numbers of people are suffering while the SNP fails to act.
The figures include constituents of mine; we have heard many constituents’ stories. One constituent has contacted me with a heart-breaking story. She is a nurse in Edinburgh and is suffering from long Covid. Her story certainly breaks my heart. After contracting Covid in 2020, she was signed off work in August that year and was not able to return until February 2021. When she returned to work, she managed to maintain herself at work until August 2021, when she then went off sick again with extreme fatigue, constant headaches and continuous dizziness. Her job is now at risk because she is still not well enough to return to work, despite the fact that she is still waiting for further assessment and referral. There is no primary care pathway for GPs to access services.
My constituent feels very strongly that the system does not work. As I have said, there is no clear pathway to referrals for services. A network of long Covid clinics would ensure that we would reach everyone who is struggling with the debilitating condition. Patients cannot wait for years for action. Too many of the people who have fought Covid are still suffering with the consequences months after they caught the virus. Without proper long Covid clinics, many of those people will continue to be missed.
Aside from clinics, we need the Government to ensure that there are better guidelines for support across health and social care. My constituent said:
“Long Covid is not going away. I do not appear to be getting better and I am not getting any kind of meaningful treatment. I do not appreciate being left to rot, having done my duty, and attended work during the pandemic to support my frontline colleagues in my nursing role. Nor do I appreciate being written off due to others’ ideas of disability and capability.”
It was quite humbling to get that email.
Physical health conditions can have negative impacts on a person’s mental health. Financial stress is also associated with poorer mental health, and long Covid is documented as affecting people’s ability to work. Stress, fear, and the trauma of having long Covid, and uncertainty about the future are also noted to have exacerbated poor mental health.
Everyone knows that people who suffer from long Covid are likely to experience mental health problems including post-traumatic stress disorder, anxiety and depression. Recent research into long Covid mirrors that finding; it has determined that there is a high probability that suicide rates will increase among people who are experiencing long Covid. That is a result of the psychiatric, neurological and physical symptoms of the virus. However, suicide is not even mentioned in Scotland’s long Covid service document.
The Scottish Government’s motion refers to the need to develop models of care that will
“benefit the management of other long-term and complex conditions”.
Therefore, as John Mason did, I want to make reference to the similarities between long Covid and ME and how those conditions have been recognised.
Attitudes to ME have been changing with the emergence of long Covid. The two conditions have many similarities. Like long Covid, ME is a post-viral disease, and it has many identical fluctuating symptoms. The hallmark symptom of ME is post-exertional malaise, which is a worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity. Many people are extremely concerned that doctors who treat long Covid patients are not aware of the dangers of exercise for patients who are suffering from fatigue.
The National Institute for Health and Care Excellence guideline on ME, which was published in October 2021, has not yet been implemented in Scotland, which has led to a void in guidance on treatment of ME. Long Covid patients who have ME face the prospect of being treated by doctors who have little knowledge or understanding of ME and who, at worst, will recommend treatment that will harm them.
In Jan 2019, in response to #MEAction Scotland’s petition, Jeane Freeman told the Public Petitions Committee:
“We should not wait until we have a better research base and greater clarity on what treatment options might be appropriate. People are living with ME right now, so we need to look at the work that needs to be done to increase awareness and understanding of the condition”.—[Official Report, Public Petitions Committee, 24 January 2019; c 35.]
That statement was made more than three years ago, yet nothing has changed for people with ME in Scotland. We cannot allow there to be the same inaction on long Covid. As Jackie Baillie said today,
“we now see baby steps being taken. Snails move at a faster pace.”
My colleague Dr Gulhane made it clear that patients with long Covid want the Parliament to take concrete action. We urgently need a clear strategy for tackling the disease, and funding must be ring fenced for treatment of long Covid patients. NHS staff are going above and beyond, but they cannot provide the service that patients deserve because the SNP Government has failed to resource them properly. Although we welcome the £10 million of funding, it is spread over three financial years and, as Jackie Baillie said, will amount to only £33 per person.
Will the member take an intervention, with a view to extending the time that her speech takes?
In England, £210 million has been announced for treatment of long Covid. In Wales, which has half the population of Scotland, the figure is £10 million. Does the member understand why the SNP Government lacks the ambition to treat long Covid?
I cannot understand what is going on in the head of our cabinet secretary. Surely an appropriate level of funding ought to be provided to support the development of a solution to present to the people of Scotland.
Does Sue Webber accept that the money that we have announced is additional money and that money is already being spent on long Covid? Moreover, in Scotland, we spend £111 more per head on health than the Government of Ms Webber’s party does in England.
I believe that the Government is spending £2.5 million on research, so there is a long way to go before we have parity with the rest of the UK when it comes to research or investment in long Covid services.
In June last year, we published a policy paper on long Covid, which raised awareness of the extent and impact of the disease and what we should be doing to tackle it. We want the SNP Government to recognise the disease and to give patients the treatment that they deserve. It should publish a clear long Covid strategy, create a specific long Covid care fund and work with health services and research institutions across the UK to find out more about the disease. It should write more than just the chapters that the cabinet secretary mentioned earlier. The Government also needs to invest in a network of specialist clinics and to adopt an app-based treatment service.
As my colleague Craig Hoy said, people with long Covid who live in Scotland are 20 per cent more likely to be severely affected by the disease in their day-to-day lives than people with the condition who live elsewhere in the UK.
In England, the NHS operates 90 specialist long Covid clinics; in Scotland, there is none. The SNP Government’s inaction is having a real impact on people who are affected by long Covid. When the SNP Government’s long Covid paper was published, the ONS estimated that 79,000 people in Scotland were suffering from long Covid. Now, that figure is 151,000 people. Six months of dither and delay have meant that 72,000 people have not been able to access the support that they were promised in September. That is why we need a network of specialist long Covid clinics.
If there was a “will”, rather than a “may”, in the cabinet secretary’s motion, then there would be a way for us to support the Scottish Government’s motion. Unfortunately, we cannot.
I call the minister to wind up the debate. Please take us to just before 5 o’clock, Ms Todd.16:50
I thank all the members who have taken part in today’s debate, which has given us the opportunity to reflect on the progress that we have all achieved so far, to acknowledge the complexities and to discuss where there are further opportunities to improve our support for people living with the long-term effects of Covid-19.
Importantly, the debate has enabled us to provide Parliament with an update on the outcome of the thorough planning process that NHS boards have undertaken to determine the key priorities for the first allocations of the long Covid support fund and to hear members’ feedback about those proposals and what else we can do to ensure that people living with long Covid continue to be supported.
All of us in this chamber, either from our personal experience or from professional engagement with constituents, recognise that long Covid continues to be prevalent in Scotland, as it is across the UK and worldwide. As we have heard today, long Covid presents a new challenge for our healthcare system to respond to, in the context of the wider pressures that have been caused by the pandemic, which amount to the most significant challenge that our NHS has faced in its 73-year history.
When the minister talks about the additional funding, will she say how much of that £10 million has been paid out, and for what treatments?
All that money is for this financial year and will be paid out during this year.
It is important to stress that, although Covid may be new, we are by no means beginning from a standing start. The fact is that the experiences of people living with long Covid underline the relevance of key services that are already being delivered by our NHS and of the reforms and improvements that we are already taking forward.
For example, we are expanding multidisciplinary teams within primary care, giving people access to a wider range of healthcare professionals through their local practice. That includes the recruitment of further community nurses to assist with diagnostic tests and chronic disease management and of physios to treat musculoskeletal issues in the community.
Will the minister take an intervention?
Give me a moment to finish this section of my speech.
There are also pharmacists to help with repeat prescriptions.
As my colleague said, we spend £111 more on health per person in Scotland than they do in England. That amounts to £600 million a year. We have invested £360 million to recruit those teams over four years, and are investing a further £170 million as part of the 2022-23 budget to continue their expansion.
We have published our “NHS Recovery Plan 2021-2026”, backed by more than £1 billion of funding, which sets out our plans for increasing in-patient, day case and out-patient activity to address care backlogs. We announced our £120 million recovery and renewal fund in February 2021 to deliver the commitments set out in the mental health transition and recovery plan, in response to mental health needs arising from the pandemic.
Will the minister accept an intervention?
I am going to take an intervention from Mr Whittle when I finish this section of my speech.
As part of our recovery and rehabilitation framework, we are awarding initial funding of £350,000 to support the delivery of a once-for-Scotland rehabilitation approach.
We have heard today about myriad symptoms related to long Covid and there are now 151,000 people in Scotland suffering from long Covid. We should gather all the information together. It would provide a good study. We should have been able to take forward some sort of treatment long before now to help people with such a debilitating condition.
I reiterate that the investments and improvements that we are making in all those areas will benefit all patients who access the services of the NHS in Scotland, including people who have long Covid. Put simply, just because a service does not have “long Covid” written on the plaque at the door, that does not mean that it cannot provide and is not providing a service to people in relation to the symptoms and the needs that they have as a result of long Covid.
Will the minister give way?
No, I will not give way to Mr Cole-Hamilton.
Well, we have already heard twice from him, and much of his time was spent in explaining that he was not in charge of Government business. The electorate has given its opinion on Mr Cole-Hamilton and his party.
The testimony that has been put forward by members has highlighted that more remains to be done to strengthen the services that are providing that support. We are pleased to have been able to outline today our initial allocation of £3 million to health boards to do exactly that. That investment reinforces our commitment to ensuring that people who have long Covid have access to the right care and support, in a setting that is appropriate and as close as possible to home.
That money was announced in September. How much has been spent, and what have we got for it?
In order to deliver the service that is required, it would not be appropriate for the Government to oversee the boards’ clinical and expert assessment of the specific needs of their populations and dictate to them what specific models of care they should put in place for their patients. [Interruption.] The outcome of the robust gap analysis and planning exercise that has been undertaken with NHS boards by the strategic network is evidence of the fact that, as the clinical guideline on long Covid that was developed by SIGN, NICE and the Royal College of General Practitioners—[Interruption.]
That is enough heckling between the front benches and from the back benches. Please desist.
I reiterate, and I would have thought that Dr Gulhane was aware, that the clinical guideline on long Covid that was developed by NICE, SIGN and the Royal College of GPs noted that
“one model would not fit all areas.”
That is why we are providing resources and national support to our NHS boards in order to equip them to respond in a flexible and tailored way.
Much of the debate has focused on the subject of long Covid clinics. To present those as some kind of panacea is unhelpful, and overlooks the lived experience of those who access those assessment clinics in England and the fact that the RCGP, of which I believe Dr Gulhane is a member, has stated that many people with long Covid
“are cared for by their primary care team accessing investigations, treatment and rehabilitation in the community”
“not every patient with prolonged symptoms of Covid requires referral to a specialist service”.
From our engagement with clinicians and those who live with long Covid, we know the frustration that is often felt after lengthy waits for secondary care tests and investigations, only for the results to come back as seemingly normal, despite the persistent and very real symptoms.
Will the minister take an intervention?
Give me one moment.
As such, our response has to focus on identifying the personal outcomes that really matter to people and, through shared decision making, providing effective and evidence-based support that helps people to achieve those as far as possible.
I give way to Pam Duncan-Glancy.
I ask that the intervention be very brief.
Does the minister understand that the clinics that she is suggesting that people with long Covid should attend are already bursting at the seams with other people who have long-term conditions and are unable to get appointments, in some cases for months or years?
As a public health minister in the middle of a global pandemic, I certainly understand the level of strain that our NHS is experiencing at this moment.
As I have said before, we do not want to make this a political fight. We want to concentrate on supporting people in Scotland in the best way possible for their needs.
The Scottish Government and all of us here are absolutely committed to increasing awareness of the long-term effects of Covid-19 and ensuring that people can access the right care in the right place at the right time.
I thank everyone who has taken the time to speak to us to inform our picture of what more needs to be done to meet people’s needs. That includes NHS boards, front-line staff and third sector organisations, but crucially it also includes people living with long Covid, who have been open and honest about what living with the persistent symptoms means for them.
I echo the words of my colleague Humza Yousaf. We have heard from—
Will the minister take an intervention?
I am in my closing seconds.
I echo the words of my colleague Humza Yousaf. We have heard from too many sufferers of long Covid that they do not feel that they have had a consistent level of support or care, and that concerns us greatly.
This debate has been invaluable in informing our approach, and our engagement with long Covid sufferers has been invaluable in informing our approach to date. We will continue to take as agile and flexible an approach as possible in ensuring that this Government does as much as we can possibly do to support those who are living with long Covid.