Chamber and committees

I will direct the question at Nora Senior. We are talking about student experiences, so I feel that my question will fit in well, here. We have achieved the access target of 16 per cent of students coming from the most deprived areas, but what progress has been made in improving access for people with disabilities, including learning disabilities, and those from black and ethnic minority backgrounds?

Do you have any recommendations on how that could best be taken forward?

I am interested in your mention of the impact of shame and guilt on people’s ability to participate in public life and the huge impact that that has on mental health, which will be a massive issue in our recovery.

Back in January, Mary Glasgow spoke about how brutal and unfair the cut in universal credit was and how it had a huge impact on children and families, not only practically and financially but emotionally. She said that that sent a message about society’s view of people’s needs and created shame and guilt. Often, the media do not help with that perception.

Notwithstanding all the measures that we bring in to address poverty, are there other things that we can do to help people to feel respected and valued, and to remove the shame and guilt that people find so isolating and that have such a bad impact on their mental health?

I have a question for Gill Bhatti on employability. There are specific barriers in relation to neurodiversity and a lot of anxiety and mental health issues are prevalent in the neurodiverse group, too. Quite often, the job interview process screens out neurodiverse people because of the eye contact and social communication skills that are looked for. How is that being monitored? What is the evidence actually saying? What steps are being taken to address that gap?

Danny Boyle, I heard from a patient who had requested access to her medical records and found that many of the medical professionals she had been in touch with had recorded her under different ethnic backgrounds—rather than asking her directly, they had made a decision themselves. Further, assumptions were also made around her diet, for example, because of her ethnicity, but they were not correct. Is that something that is an issue that you are aware of? Is it quite common? Obviously, it has implications for the data that we have. How much of a role does that issue play?

Apologies. My specific question was about the national health service and the series of different health professionals and consultants recording different information. How much of an issue is that? Is that being looked at?

[Inaudible.]—national health service—

Before I ask my questions, I want to say to Dr Jackson that I am really interested in the development of the national oversight observatory and repository for Scotland, and that it would be great to hear more about that come May next year, when we have more information about it.

My first question is for Claire Sweeney. You talked about linking spending to outcomes, and the importance of community planning partnerships. Are there specific people who should be on community planning partnerships? Are there people who are not on them but should be? Are there links that the community planning partnerships should be making? I know that there is variation across local authorities when it comes to who sits on those partnerships.

As a wee aside, you mentioned measuring the link between spending and outcomes. Does that sometimes get in the way when things are difficult to measure? Does it mean that the focus is not applied in the right way?

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?