Chamber and committees

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.

We have spoken about the comments of Ruth Binks from Inverclyde Council, about the challenge authorities being pathfinders, about the fact that the workforce has skilled up and about the authorities’ ability to manage PEF money growing year on year. In the evidence that we have taken, we have heard about teachers being able to reach into families, understand them better and understand the impacts of poverty. We have also heard that teachers have independently reached similar understandings of what has worked well for families and what has the most impact.

Do you consider that the pathfinder funding approach was successful? What has worked particularly well? Were there particular challenges? Mr Marra has commented about cuts quite a lot but, if we look at the pathfinder approach, that is not really what has gone on there. He mentioned some personal conversations that he has had, but that was not committee evidence. Was it clear enough from the outset that a pathfinder approach was being taken, or is that perhaps a learning point?

Mr Dey made some important points about the collaborative working that has developed and really flourished with the RICs at both the local and national levels. Families seem to have had quite a bit of input and there has been close working with teachers and so on. How can we ensure that families continue to influence policy and decision making not just at the local level, but at the national level, too? How do you intend to do that?

How will multiyear funding support better planning?

The Scottish Human Rights Commission has expressed concern about the UK Government’s plans to introduce legislation to replace the Human Rights Act 1998 with a new bill of rights. Can the Deputy First Minister say whether proposed reforms could take place without unsettling the current devolution arrangements, and what actions the Scottish Government will take to oppose any regressive proposals?

Although it is great that many people are getting help with new boilers under the warmer homes Scotland scheme, the decision in May 2017 to exclude non-traditional construction properties from funding for external wall insulation means that a lot of expensive energy is still wasted. Many local authority houses are affected. Would the Scottish Government consider reviewing the position, given the current cost of living crisis?

We have known for quite a long time from the Christie commission report and so on about the shift that needs to be made from critical to preventative care. Indeed, that is something that I think we can all agree on. Have we looked at the level of unmet need and what it would cost to meet it, instead of just looking at how we meet substantial and critical needs? Is there a greater cost in not meeting those needs from the point of view of prevention and keeping people well?

It is a work in progress.

Yes. The recommendations in the 2019 fair work convention report went way beyond pay and conditions. Can you provide us with examples of, or information about, plans for how social care workers will be involved in the design, development and delivery of the service?

Earlier, you gave us the very good example of Granite Care Consortium—I hope that I got the name right—and front-line staff being able to step up care to prevent people from going into hospital and then to step down that care. How can we measure the effectiveness of our investment in prevention and build that evidence so that we can deliver this right across the board at national level?