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Chamber and committees

Meeting date: Tuesday, November 9, 2021

Meeting of the Parliament (Hybrid) 09 November 2021 [Draft]

Agenda: Time for Reflection, Topical Question Time, Covid-19, Young Persons Guarantee and National Training Transition Fund, Parliamentary Bureau Motions, Decision Time, Long Covid


Contents


Long Covid

Before we begin the final item of business, I remind members of the Covid-related measures that are in place and that face coverings should be worn when moving around the chamber and across the Holyrood campus.

The final item of business is a members’ business debate on motion S6M-01861, in the name of Alex Cole-Hamilton, on long Covid as a condition of concern. The debate will be concluded without any question being put.

Motion debated,

That the Parliament considers that long COVID is a condition of serious concern; understands that figures published by the Office for National Statistics estimate that 79,000 people in Scotland, including individuals in the Edinburgh Western constituency, have already self-reported long COVID; notes that symptoms of long COVID include chronic fatigue, muscle spasms, breathing problems, sleep problems and cognitive impairment; understands that, of those who have self-reported, 61,000 have been experiencing symptoms for more than 12 weeks, and 31,000 have been experiencing symptoms for a year; considers that the omission of long COVID from the NHS Recovery Plan was a disappointment to many who currently have the condition; notes the view that the support currently available to people with long COVID does not sufficiently address their needs, and that more measures, including specialist clinics, a care pathway and community nurses who are able to visit people at home where necessary, must be introduced, and further notes the calls for long COVID to be prioritised in future Scottish Government decisions.

17:19  

It gives me great pleasure to rise to speak to the motion in my name. I am dismayed, however, that we are already 18 or 19 months into the pandemic, and it is at least 12 months since the first sufferers of the condition that we now know as long Covid had that condition identified. It is disappointing, therefore, that it has taken Opposition time, in a members’ business debate, to lead, for the first time, on this important subject in the chamber.

I know that this will not be the last debate, and that the matter will occupy our attention—rightly so—for many years to come, because long Covid is accelerating. In October alone, 13,000 new patients were identified with that terrible and debilitating condition. Every member in the chamber, and everyone in our communities, knows somebody who has had Covid and is still suffering from it many months later.

The effects can be brutal—in fact, long Covid has been described as potentially the largest mass disabling event since the first world war. It is not overly dramatic to say that. The Government’s response to long Covid in this country has been so poor that sufferers in my constituency—and in your constituency, Presiding Officer—would be better off if they moved to England, given the care pathway that is available to sufferers of long Covid south of the border.

That is why my motion calls on the Government to act in a meaningful way, beyond the long Covid service and the small amounts of money that have already been dedicated to the condition in Scotland, by bringing in long Covid clinics in every health board in the country and delineating a care pathway for sufferers to follow, from the moment that they are identified, into a range of interventions, whether that is aquatherapy and other forms of physiotherapy or other types of support.

The motion also refers to the need for dedicated nurses. Before Covid, I did a lot of work with myalgic encephalomyelitis sufferers, and I was horrified to find that there was only one peripatetic ME nurse on the whole eastern seaboard in Scotland. Many long Covid sufferers are too ill to leave their homes for long periods, and it is incumbent on us to ensure that the resources are there to offer them care in their homes.

Does Alex Cole-Hamilton agree that, although the nature of long Covid means that there is an increasing field of various symptoms that individuals suffer, if we had a pathway in Scotland, we could start to collate the evidence, and thereby reduce long-term need for the services that our constituents require?

Martin Whitfield is absolutely right—we are behind the curve in how we respond to long Covid. It is a basket of conditions; I will come to that in a moment. People who suffer from long Covid experience a vast range—there are hundreds—of symptoms. They do not all occur together, and they may present very differently. They include, but are not limited to, breathing difficulties, to the point of asphyxiation; chest pain; numbness; fatigue; tachycardia; diarrhoea; and neurological conditions. Symptoms are often experienced in a relapsing and remitting pattern, and the impact on people’s activities, daily lives and ability to work is huge.

Aside from physical side effects, long-term Covid sufferers are faced with issues ranging from trauma to serious discrimination, which I will come to shortly. They report major difficulties in accessing primary and secondary care, and issues with healthcare practitioners who, despite being sympathetic, are unsure or unable to help as a result—as we have just discussed—of the lack of treatment pathways.

Long Covid Scotland has reported cases in which long Covid patients have been wrongly prescribed medical interventions, such as graded exercise therapy, that could exacerbate their condition. Graded exercise therapy was recently removed from the National Institute for Health and Care Excellence guidelines for conditions that are reported to have symptoms that are similar to those of long Covid, and yet it is still being prescribed as a therapy for long Covid sufferers.

We should make no mistake about it—the current situation is not the fault of the healthcare profession or of healthcare professionals. If the Scottish Government refuses to acknowledge long Covid or the serious debilitating nature of the condition, how can healthcare professionals be expected to offer sufferers the care that they deserve without the resources to do so? Long Covid patients are stuck in limbo, where researching and advocating for themselves or their loved ones is their only lifeline, and their only source of hope, in the face of this awful condition.

As I said, the physical symptoms are legion, but they are only half the story. Long Covid patients also have to deal with a range of other issues. General practitioners and charities are doing their best, but the size of the phenomenon is on a different scale, and Government web pages are not much use to someone with air hunger who feels as if they are suffocating and literally gasping for breath. Specialist Covid clinics should exist in every health board, peripatetic nurses should be available and there should be a dedicated care pathway.

Many people who suffer from long Covid end up experiencing significant financial challenges, either because they are unable to work or because they are having to shell out money for treatments and investigations. With regard to financial support, the benefits system has not yet responded to this debilitating condition, and there is real concern that, when it does, support will not be made available to everyone.

There is a particular inequality even among long Covid suffers themselves. I ask members to cast their minds back to March 2020, when our testing capacity was considerably limited; testing was available only to healthcare staff and a very small group of other key workers. Many of the “first wavers”—as they refer to themselves—were, therefore, never diagnosed with Covid-19, and it exists nowhere in their medical records. As such, it makes reaching a definitive diagnosis all the more difficult.

Many may never receive an official diagnosis, or the attendant sick leave or benefits to which they may become entitled. Most will be subjected to disbelief or accusations of malingering. Those who have caring responsibilities are at particularly high risk in that regard, and the threat of financial difficulties may mean that they end up pushing themselves beyond the limit and reducing their quality of life still further. People with long Covid are further discriminated against as a result of their lack of positive test and their not having been hospitalised, and because of pre-existing inequities relating to their socioeconomic status, race or gender.

I understand that I am coming to the end of my time, Presiding Officer, but there is so much more that we need to say about the condition. We do not know how many of our citizens caught Covid-19 in the first wave, nor do we know how many are nursing it now or how many will contract it in the future. We are told that we may have to live around Covid-19 indefinitely. There is no vaccine for long Covid, and we still do not know how long it lasts, if it ever stops at all. The condition will occupy the attention and the business of the Parliament for many years to come, and it should not have taken an Opposition debate, in members’ time, to bring it to the chamber for the first time. Nevertheless, I am proud to have brought the debate to the chamber this evening.

17:27  

I thank Alex Cole-Hamilton for bringing this important topic to the chamber. The numbers of people with long Covid are high, and that is a major public health matter. More than 75,000 people in Scotland are currently estimated to be suffering from long Covid and, as the pandemic continues, the numbers will only grow.

One of my constituents, Suzanne, who is suffering from long Covid, contacted me to try to help me understand the impact that it is having on her life. She told me:

“Having contracted Covid in October 2020, I have been unable to return to a normal life. I struggle daily with fatigue and a number of other symptoms that vary on a day-to-day basis. I have gone from being a full-time working mum who studied part-time and went to the gym three times a week to somebody that I no longer recognise. I barely leave the house now as I need to prioritise what little energy I have to take care of my two young daughters.”

Although the physical health impact of long Covid has been severe on Suzanne, the story does not end there, and there are many like her. The life-changing impact of Covid also impacts on the mental health of both the sufferer and their family.

For those who are unable to work, long Covid is causing financial distress too. Long Covid sufferers, often for the first time in their lives, face the daunting prospect of navigating the cruel complexities of the United Kingdom’s social security system, which is unlikely to prove flexible enough to respond to their needs.

While there is still much that we do not know about long Covid, we know that doing nothing is not an option, and that we must act. That is why I warmly welcome the Scottish Government’s £10 million long Covid support fund for national health service boards. The fund is an excellent start to help NHS boards to develop flexible models of care that can respond to patients’ changing and varying symptoms. Those flexible care responses are essential. People who are suffering from long Covid make it clear that there is a need for primary care to be strengthened, and to embed healthcare staff and allied health staff locally to provide the necessary support, including rehabilitation services.

It is also important to ensure that long Covid knowledge hubs have the latest up-to-date information, so that those suffering from long Covid can better self-manage their changing and variable symptoms.

Alongside front-line investment in services, research into long Covid is vital. The Scottish Government’s £2.5 million of funding to support nine research projects will be a rich source of data that can help to improve services in the future. It is that dual track of immediate strengthened service response and medium-term scientific research that will improve the long-term lives of so many Scots who are suffering from the life-changing effects of long Covid.

Let us not forget our children and young people. While young people are statistically less likely to suffer severe Covid symptoms, there can be serious long-term impacts on their health, too. On a personal level, I know two teenagers who were infected with Covid way back at the beginning of the pandemic. One of them now has immune system issues, and the other has heart complications. Both of those are long term. I thank goodness that our young people in Scotland are receiving vaccines, too.

Before I close, I will highlight the growing evidence that younger working-age women are more likely to suffer from long Covid. We cannot allow long Covid to further embed gender inequalities. Today’s debate is an important opportunity to hear the voices of people with lived experience of long Covid, and I hope to hear more from other members. It is only by hearing their stories and listening to their asks that we can truly embark on improving their lives. We must listen now, and we must keep on listening.

17:31  

I thank Alex Cole-Hamilton, my co-convener of the cross-party group on long Covid—along with Jackie Baillie—for securing the debate. Around 4 per cent of Scotland’s workforce suffers from long Covid. For economists looking at the macro impact on the labour market or for those resourcing the delivery of healthcare services, long Covid is indeed a condition of concern. This Tuesday evening, for many of the 100,000 Scots who are struggling with fatigue, dizziness, brain fog, pain in their joints and poor mental health, long Covid is much more than a concern. It is debilitating. With slurred speech, indescribable headaches, a fluctuating heart rate, numbness and tummy issues, thousands of people in our country can barely function tonight.

According to the latest statistics from the Office for National Statistics, more than 90,000 people in Scotland have experienced long Covid for four weeks, 70,000 for 12 weeks and 29,000 for 12 months. Let us consider this. There has been a 16 per cent increase in the number of long Covid patients since October’s data was published. That is 16 per cent in one month.

Long Covid is not just a condition of concern; it is now a crisis in the making. In my maiden speech on 27 May, I underscored the problem of long Covid from my experience as a GP. On 1 June we debated the national health service recovery plan, and I called on the Cabinet Secretary for Health and Social Care to commit to establishing specialist long Covid clinics.

What are we actually doing on long Covid here in the Scottish Parliament? After meeting the Cabinet Secretary for Health and Social Care and his advisers to discuss the creation of a long Covid network based on my suggestions, the cabinet secretary announced a £10 million long Covid support fund on 9 September to help health boards respond to the condition. Three weeks later, on 30 September, the cabinet secretary provided more details, stating:

“The fund will support local services to develop and deliver the best models of care appropriate for their populations, which could include strengthening and improving the co-ordination of existing services, or establishing dedicated services”.

I am pleased that the Government acted on my call and made the £10 million commitment. That said, we really need to step up a gear and sort out the details. Tackling long Covid is not simply a box-ticking exercise on a spreadsheet. As we sit here in Parliament, in our privileged positions, I cannot help but think of two people who are suffering. One is a young mum who used to run 5 to 10km but who can now barely make it to the toilet and has now moved in with her mum so that she can help look after her kids. Another is a teenager, of school age. She said:

“Mummy, how long is this going to last? I can’t go on like this.”

To tackle long Covid, the Government urgently needs to address some of the systemic bureaucratic barriers that are hindering the delivery of an integrated long Covid service. I urge the minister, in closing the debate, to try to get to the heart of that problem.

Long Covid requires a multidisciplinary approach. The care pathways should reflect that, and patients should be provided with a personalised care plan. Money has been allocated. There is a broad-brush plan that leaves many of the decisions to the health boards, but the Parliament is yet to see the details. We need to know what the health boards are doing right now. What is happening this week, this month and next month? We need a timescale and a plan. We need to know where our suffering constituents can go for specialist treatment that is not just available in England.

The absence of a long Covid action plan—that is a condition of real concern.

I call Jackie Baillie, who is joining us remotely.

17:35  

I congratulate Alex Cole-Hamilton on securing the debate and the content of his speech. I apologise for not being with other members in the chamber.

I am delighted that the Parliament has formally recognised the establishment of the cross-party group on long Covid. I am also delighted to be speaking in the debate along with Alex Cole-Hamilton and Sandesh Gulhane, who are my co-conveners.

Everybody in the chamber will have a constituent who is suffering from long Covid. After all, according to statistics from the ONS, almost 80,000 people are affected. They are all ages, come from all walks of life, and experience many different problems, such as chronic fatigue, brain fog, cardiac problems and breathing difficulties.

The cross-party group has heard many extraordinary, and sometimes harrowing, accounts of how long Covid affects people. We heard from a mother whose young daughter is unrecognisable. Before Covid, she was energetic and cheerful. She has missed out on so much school and so many friendships that she is not so outgoing anymore. Then there is the woman who had spent a lifetime dedicated to the voluntary sector and was in paid work. Currently, she is unable to work, and her employer is not willing to adapt to her condition.

One of my constituents is a nurse in the NHS. One would think that the NHS would understand, be flexible and want to retain her precious skills in the service. However, she was feeling so harassed that she actually quit her job, and her skills have been lost to the NHS. She is not alone—many employers are behaving in the same way.

There are many more stories involving people of different ages and backgrounds, but I will focus on what the Scottish Government is doing. I genuinely think that the Scottish Government has been far too slow to act. At a time when there were specialist clinics and substantial sums of money going into the NHS in England to allow people to be treated alongside research, and defined clinical pathways in Wales—again, with money behind them—nothing was available in Scotland. I had people going to their GP surgery, trying to get support, being—[Inaudible.]—who then referred them back to the GP. It was a revolving door, with little support at the end of the process.

Let me try to find consensus this evening, because the issue is far too important to do otherwise. The cabinet secretary has put £10 million on the table, which is extraordinarily welcome. However, I do not think that it has yet been distributed to health boards, or that there is a plan as to what will happen. I share my colleagues’ frustration at the lack of detail, not only for us as politicians, but for long Covid sufferers and the GPs who are trying to refer them into the system. Undoubtedly, there is a postcode lottery out there.

I urge the minister and the cabinet secretary to get a move on, take action quickly and get the money into services where it is needed. I ask the minister to convey to the cabinet secretary the urgency of his having a one-to-one, direct meeting with Long Covid Scotland, so that the views and life experience of those who suffer from the condition can help to shape the proposals.

I will briefly mention the gendered nature of Covid. We need to recognise long Covid as both a disability and an industrial injury. Women’s exposure to the virus has been greater due to the gendered patterns of work. The majority of front-line workers in health, social care and education are women. They have been on the front line during the pandemic, and are more likely to catch Covid than anyone else. Health and Safety Executive figures bear that out. In the six months from April to September 2020, 75 per cent of the Covid employer reports that were made in Scotland related to women. Women in the 50 to 60 age group are at greatest risk of long Covid. For all those reasons, I hope that members will support Mark Griffin’s proposed Scottish employment injuries advisory council bill, which would address many issues to do with industrial injury.

It is time to get serious about long Covid. I beg the Scottish Government to take action on services, to listen to people with lived experience and to—please—get a move on.

17:40  

I welcome the opportunity to speak in this debate and I thank Alex Cole-Hamilton for securing it.

As the Covid-19 pandemic continues, the need to understand and respond to long Covid is increasingly pressing. We have heard from members about the reported symptoms, such as persistent fatigue, breathlessness and depression, which can be debilitating for many people, and there are many other physical and psychological side effects.

The term “long Covid” is commonly used to describe signs and symptoms that continue or develop after Covid-19. Most evidence is limited and based on small cohorts with short follow-up. I read about research that was published in The Lancet by Dr Lixue Huang and colleagues, who reported 12-month outcomes from the largest cohort of hospitalised adult survivors of Covid-19 so far. They reported that, at one year, Covid-19 survivors

“had more mobility problems, pain or discomfort, and anxiety or depression than control participants ... Fatigue or muscle weakness was the most frequently reported symptom at both 6 months and 12 months, while almost half of patients reported having at least one symptom, such as sleep difficulties, palpitations, joint pain, or chest pain, at 12 months. The study shows that for many patients, full recovery from COVID-19 will take more than 1 year, and raises important issues for health services and research.”

I agree with the contention in the motion that long Covid is a condition of concern.

I was interested to hear about the impact of paediatric long Covid and the work of Dr Binita Kane and Elisa Perego in that regard. There is emerging scientific evidence that a not-insignificant percentage of children develop long-term symptoms following exposure to the SARS-CoV-2 virus. I was going to go into more detail about the paediatric research. It is interesting that acute kidney disease, immune dysfunction, lung perfusion defects and on-going inflammatory lung conditions have been reported up to 60 days into the post viral-infection period.

More than 1.1 million people are suffering from long Covid. This morning, I received an email from a constituent, who does not want me to give his name. He said that he is thankful that there is emerging research that will improve understanding of the illness, and he thought that it would be helpful to provide some explanation so that, in this debate, I could talk about the emerging evidence base. He said that cardiopulmonary exercise testing has demonstrated that patients with long Covid suffer from impaired systemic oxygen extraction. Basically, he said that long Covid is not a psychological illness; patients with long Covid cannot get oxygen from their blood to their cells. That results in multi-organ oxygen starvation, which explains their widespread symptoms.

A summary of acute Covid-19 effects includes blood clots and micro blood clots. There is laboratory equipment in Scotland that can test for the thrombogenic coagulation disorders that seem to be appearing in patients who are suffering from long Covid.

I support the approach that Scottish Government is putting in place. Research is still in its initial stages, but we need to take action as soon as possible.

17:44  

I thank my colleague Alex Cole-Hamilton for bringing the debate to the chamber.

We have heard about fatigue, breathlessness, muscle aches, memory loss and persistent coughs. Those are all symptoms to be concerned about on their own, but, for some people, they come all together or in a combination.

Long Covid symptoms have led people in Shetland and many others throughout the country to change their way of life radically. In the summer, I urged sufferers to contact me and NHS Shetland to gain an understanding of local demand for long Covid support. Only with an accurate understanding of how many people are still recuperating from Covid can we provide the care and assistance that patients need.

After my call, I received the following comments from a constituent, who asked that I add their name to the list of people who have long Covid. They said:

“Like many others in Shetland, I caught Covid last year just as they stopped testing and told us to stay at home and not bother the NHS. I did phone 111 during a very scary 48 hour period.”

In a call-back, they received a verbal diagnosis that they had Covid and a secondary infection of the lungs. The doctor put them on a course of antibiotics.

My constituent went on to say:

“Thankfully I managed to get through it without having to go to hospital but I so wish I had had the opportunity to get oxygen during the worst part ... I believe I have been living with Long Covid, since overcoming the initial and secondary infections, for well over a year now and I am currently battling a ‘bout’. I am lucky in that respect—I only get bad bouts of it rather than suffer badly from it all the time. I feel like I have aged a decade in a year, my mind does not work at all well now and I have less than half the ‘energy’ I used to but I can still function ‘normally’ until a random bout hits me and the various debilitating symptoms have me take to bed for ... 3 to 4 days. I have spoken a couple of times to a GP at my local Health Centre and have been met with ‘but you haven’t had a positive test result’”.

Other members have made the point about test results and sufferers not being believed. That sounds similar to the management that many ME and chronic fatigue syndrome sufferers have experienced for many years. I wonder whether we have learned anything from those conditions.

In the summer, I was invited to hear directly from long Covid sufferers who had set up a support group in a church hall. I arrived but no one else turned up and it transpired that all the usual attendees were simply too poorly to come along. Those people would previously not have thought twice about going to work for eight hours, taking a walk or showing up for a meeting, but now, after having had Covid, they could not physically make it to the meeting, as they were too unwell.

In England, 60 long Covid clinics have been available since December last year but, nearly a year later, Scotland has no comparable clinics. From answers to written questions to the Government, I understand that support for long Covid sufferers in terms of assessment, diagnosis, care and rehabilitation should be in a setting that is close to their home. That is an important point, especially for island, rural and remote communities.

All that is being done is welcome but, as my colleague Alex Cole-Hamilton outlined, the Scottish Liberal Democrats would go further and provide specialist long Covid clinics in every health board area, train long Covid community nurses to offer in-home support and provide country-wide access to long Covid physiotherapy and multidisciplinary rehab. [Interruption.]

The member is just about to conclude.

We would also introduce a policy of no financial detriment for workers who are absent for long periods due to long Covid.

In September, I called for a new-build hospital fit for the 21st century to replace Shetland’s current ageing building. A new build would support medical professionals to deliver modernised NHS services with the equipment, space and provisions that they need. Indeed, because the long-term impact of long Covid is not known, we might rely on our hospitals and medical professionals differently as the pandemic continues to challenge our knowledge.

Covid has had a large impact on many of our lives. For some individuals, every day is now a struggle after contracting it. We cannot leave those people to suffer in silence.

17:49  

It is a privilege to speak in the debate. I echo colleagues in thanking Alex Cole-Hamilton for bringing such an important issue to the chamber.

With 75,000 people in Scotland thought to be living with the lasting effects of Covid-19 and that number only rising, the urgency of recognising and talking about long Covid, and establishing how we can support people who have it, is great and becoming greater.

Long Covid Scotland’s briefing for MSPs ahead of the debate includes the phrase

“Nothing about us without us”.

I and many others in the disability movement know that phrase well, and it is where I will start today. In simple terms, it means that decisions about long Covid must be taken with people who have long Covid. As someone who has spent years campaigning in the disability movement, I know from first-hand experience how important it is to have a seat at the table. I also know through experience that, until that happens, people with long Covid will face an uphill battle to make sure that what needs to happen to protect their rights does happen. Therefore, I ask the Government to directly and urgently engage with people with long Covid, especially those involved in Long Covid Scotland, and ensure that they are involved in policy design, development and implementation at every step of the way.

The condition is a new one, and we do not yet properly understand it. Therefore, it is not just good practice, it is in fact imperative that people who are living with long Covid are front and centre of what we do to support them, because only they can tell us exactly how it is impacting on their lives. The Scottish Government must listen to their experiences and their solutions and then respond with concrete actions that will address their health, social care and financial needs.

In my time as an MSP so far, I have had the pleasure of meeting hundreds of organisations across the third sector, and I have heard directly from them about the impact that the condition is having. Where the Government has not been there, third sector organisations, including charities such as Asthma UK, the British Lung Foundation and Chest Heart & Stroke Scotland have stepped up, as they always do. They were already breaking their backs and their budgets to cope with the increased demand of the pandemic and they were stretched to capacity before it, underfunded and underresourced. They now have to support people with long Covid, which has been added to the long list of things that they do. They all say the same thing: that tens of thousands of people with the condition continue to live unwell, unheard and unsupported, and that the Scottish Government is at best offering piecemeal support and is not taking enough action to address their needs.

I encourage the Government to support the third sector to do its work with people with long Covid through adequate multiyear funding and support to recover from the past 20 months. I place on record my thanks to the third sector. In particular, I thank Glasgow Disability Alliance, which operates in the region that I represent, for what it does and in particular for what it has done in this year.

There can be no doubt that long Covid is having a huge impact. According to United Kingdom-wide research, 71 per cent of people with long Covid said that it affects their family life; 80 per cent said that it affects their ability to work; more than half have had to reduce their hours; more than one in five have been left unable to work at all; and more than a third said that it has impacted their finances. Those numbers show the desperate need to provide appropriate support to people, and to do so quickly. More than that, the figures show that this group of people are experiencing socioeconomic disadvantage and are disabled by most recognised definitions. To that end, I ask the Government to recognise long Covid as an impairment for all equalities and rights purposes, workers’ rights purposes and for the purposes of social security. Not doing so will exacerbate the inequality that is already deep rooted in our society, particularly among women.

My colleague Mark Griffin’s member’s bill to establish a Scottish employment injuries advisory council would allow us to address that. It would correct the process by which something is defined as an employment injury. It would lay the framework for a new independent statutory public body with the authority to reshape and remodel the related benefit, which we hope would enable Covid-19 to be recognised as an industrial disease. Recent figures have shown that 75 per cent of employer Covid-19 disease reports that have been made in Scotland were about women employees. Given that 98 per cent of workers who were earning poverty wages during the pandemic were women, the bill could create a safety net to prevent them from falling into poverty as a result of developing the long-lasting effects of Covid-19.

I believe that we must see long Covid as a disabling condition and that we must recognise and realise people’s rights. We urgently need a national strategic plan to do that, and it must be developed in collaboration with those who have experience of long Covid. The Scottish Government must act now to do that and to protect and promote the equality and human rights of everyone who is living with long Covid.

Willie Coffey is our final speaker before I ask the minister to respond to the debate. Mr Coffey joins us remotely.

17:53  

I thank Alex Cole-Hamilton for bringing the debate to the chamber. It is good to hear at least a few members welcoming the £10 million investment by the Scottish Government to help long Covid sufferers. When the pandemic started, we all began hearing stories from our constituents who did not appear to be shaking off the effects of the virus. No one was sure—[Inaudible.]—and why the symptoms persisted. We now know that to be long Covid although, even now, it is still reasonable to say that we do not know enough about it and why it persists in some and not in others.

It is important to hear the voices of our constituents who are suffering from long Covid. I am indebted to my constituent Eileen, who contacted me yesterday to ask me to highlight what has happened to her.

Eileen is a front-line health visitor in Ayrshire with 36 years’ experience. She was previously fit and healthy with no underlying health conditions. If her illness persists, she might never be able to work again. She managed the initial stages of her illness at home, but experienced many symptoms that required visits to Crosshouse hospital. After about 13 weeks of being very unwell, she was admitted to hospital having developed neurological symptoms, and she was an in-patient for three weeks. Paid-for private neurology advice led to more investigations but, alas, no treatment. The best advice was drug management for some of the symptoms and to wait and see how they developed. Occupational therapy and some physiotherapy followed, and Eileen continues to be supported at home by staff from the Douglas Grant rehabilitation centre.

I will mention just a few of the impacts that Eileen has to cope with at home. She has to sit on a stool in her kitchen to do simple food preparation and to empty her dishwasher, because she does not have the energy to do those things without that—and sometimes she cannot even do that. She has to use a seat in her shower. Even going upstairs in her house is a major task for her, as it gives her heart palpitations and breathlessness. She cannot put her washing outside, and she has to use a walking stick in the house at all times. She is bed-bound more often than not.

Eileen has gone from being a relatively fit and healthy individual to being a shadow of her former self, and there is no sign of things letting up. The crushing fatigue that she experiences and the isolation at home are having a wider impact on her mental health.

I have shared that story with Eileen’s permission, of course. It will resonate with many other members’ accounts and, I am sure, with many other people who are watching this debate. At this moment, her future and the future of many long Covid sufferers are, at best, uncertain. Her ability to do almost everything for herself has been replaced by an inability to do anything. There has been a huge transformation in her health and quality of life.

In one of Eileen’s messages to me, she said:

“I feel like a pinball machine with Covid having hit every cell in my body at some time over the past 19 months; I am single with a mortgage and I’m so worried for my future.”

Eileen’s story is not unique, but it is heart breaking, and the situation is becoming urgent.

I hope that, when the minister sums up, we will hear some more about the research funding and on-going support for long Covid sufferers, and perhaps also about potential beneficial treatments that we read about—for example, hyperbaric treatment appears to be having a positive impact. Most of all, I hope that we can hear that long Covid sufferers are very much in the minds of both Governments, to ensure that they will continue to be supported in respect of their employment and financial obligations and that the recovery from the physical and mental health trauma that they suffer will be a top priority as they continue to endure an incredibly debilitating condition.

17:58  

I thank all members who have taken part in discussing what is an important issue.

I assure members that the Government recognises the negative impact that long Covid can have on the physical and mental wellbeing of people who are affected, and that we are committed to making sure that people with long Covid receive the best possible care and support in a setting that is appropriate and as close to their home as possible. That is a key point to note in our approach.

Our response to long Covid is built on a range of well-integrated support that is already being delivered across Scotland by our NHS, social care and third sector partners. Support is available through local primary care teams, community-based rehabilitation services and referrals to secondary care for further investigation and advice, where necessary. I stress that the approach that is taken depends on what is right for the individual.

Given the wide spectrum of needs that people who are affected by long Covid can have, we know that the full range of skills and knowledge of our multidisciplinary teams is required. That is why we are investing £155 million through our primary care improvement fund to support development of those teams. That includes, for example, recruitment of more community nurses to assist with diagnostic tests and chronic-disease management, physiotherapists in the community to treat musculoskeletal issues, as well as pharmacists to help with repeat prescriptions and medicine reviews.

In this year’s programme for government, we committed to publishing a paper setting out our approach to care and support for people with long Covid. We delivered on that commitment on 30 September. Our paper sets out the support that people with long Covid can expect, and it outlines 16 commitments to deliver a range of improvements.

The minister seems to be very confident in the Scottish Government’s offer to sufferers of long Covid. She has rightly outlined the strategy paper and the money and action points that the Government has identified. However, the long Covid community has reported being devastated by that and feels that it was far too little, far too late. Is she telling Parliament and the long Covid community that that is the full extent of the offer to long Covid sufferers, or is there more to come?

I am not saying that that is the full offer. I will look to other countries in the United Kingdom. During my speech, I will talk about some of the things that we are looking to deliver for individuals who are experiencing long Covid.

I will set out some of the initiatives on which we have already delivered. Giving people access to clear information is a key part of supporting them to feel more in control of their condition. Last month, we launched, on the NHS Inform website, a new long Covid information platform that is specifically designed to help people with their recovery. We have invested £40,000 in a public awareness campaign, with information being displayed in community pharmacies across Scotland on how people can access further advice and support in relation to their symptoms.

We are supporting clinicians to access evidence-based information and advice on long Covid. We are actively supporting application of the UK-wide clinical guideline, and we have worked with specialists to develop a long Covid implementation support note that gives clinicians across Scotland practical help on the appropriate assessments, investigations and referrals for their patients.

We recognise the vital work of third sector organisations across the country in supporting people and communities. We have provided £460,000 to Chest Heart & Stroke Scotland to enable it to deliver its long Covid support service. Through that service, people can speak to nurses who are trained in managing some of the most common long Covid symptoms, such as breathlessness and fatigue.

The real-life experiences of people who are living with long Covid will continue to be vital in informing our approach. This month, the Cabinet Secretary for Health and Social Care will meet a range of organisations that represent and support people with long Covid, which will be really helpful in informing our evolving understanding of the condition and people’s needs.

Can the minister confirm whether the organisations that the cabinet secretary will meet will include Long Covid Scotland?

Yes—my understanding is that that will be the case.

We have backed up delivery of the commitments that are outlined in our approach paper with a £10 million long Covid support fund. It will provide NHS boards with further resource so that they can respond in a flexible and tailored manner to the needs of people with long Covid, and provide appropriate training and education of staff. In recognition of Scotland’s unique geography and population distribution, the fund will support local services to develop and deliver the best models of care that are appropriate for local populations. That could include strengthening and improving co-ordination of existing services, or establishing dedicated long Covid assessment clinics, if a health board identifies that as an appropriate response to meet local needs.

Mr Cole-Hamilton made unhelpful comparisons with England; it might be helpful for him to reflect on the reality of patients’ experiences of accessing services there. Just last week, Francesca Steele wrote in The Times of her experience of referral to an NHS England long Covid clinic. Her story is one of lengthy waiting lists and no follow-up. Ultimately, in her own words,

“the clinic was not the solution”

that she had hoped for.

Since my maiden speech, I have been talking about a Covid clinic in Hertfordshire. It is the best clinic that I have heard of, and I would like to bring that model to Scotland. The clinic, which has received fantastic patient feedback, has a GP and a dedicated team to look after patients. Is that model of best practice not the one to talk about?

We are certainly willing to look at what is taking place around the UK. We are working with The National Institute for Health and Care Excellence, the Royal College of General Practitioners and the Scottish Intercollegiate Guidelines Network to develop clinical guidelines. There is absolutely no reason why we would not look at areas of best practice in England.

However, Ms Steele’s experience is not unique, but is reflected in the findings of a survey that was conducted by Long Covid Support, which found that only 26 per cent of respondents were satisfied with their experience of NHS England’s long Covid clinics, and that 58 per cent were dissatisfied.

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. Since the beginning of the pandemic, we have learned a lot about Covid-19, but there is still a lot more that we need to understand, particularly in relation to its longer-term effects.

Will the minister take one final intervention?

You will have to do so very briefly, minister, because you are running out of time.

I appreciate your taking many interventions, minister. I know that we already have diagnostic tests that use fluorescence microscopy and thromboelastography platelet mapping. Is that part of the Government’s work on taking forward management of long Covid?

I assure Emma Harper that the clinical community in Scotland is looking at all the evidence that is being produced. Indeed, the clinical community across the UK works together to produce guidance very quickly when responding to a new disease. The community is updating the guidance, which is due soon, so it is certainly looking at the evidence base. There is also funding for—

Will the minister—

The minister should really be bringing her remarks to a close, Mr Cole-Hamilton. I think that she has been fairly generous in taking members’ interventions.

The Government has committed funding of £2.5 million to nine research projects, which cover a wide range of approaches. The research will address many of the questions about, and greatly increase the clinical knowledge base on, long Covid.

I welcome the opportunity that the debate has given me to set out some of the actions that the Government is taking to ensure that people with long Covid can get the right support that is evidence based, effective, safe and person centred. There is not a one-size-fits-all approach, but one that provides wraparound support to individuals and enables them to access the right care in the right place at the right time.

Meeting closed at 18:07.