Meeting of the Parliament [Draft]

Meeting date: Tuesday, May 21, 2024

Official Report 942KB pdf

---

National Epilepsy Week 2024

The final item of business is a members’ business debate on motion S6M-13087, in the name of Marie McNair, on national epilepsy week 2024. The debate will be concluded without any question being put. I ask members who wish to speak in the debate to press their request-to-speak buttons.

Motion debated,

That the Parliament recognises National Epilepsy Week, which runs from 20 to 26 May 2024; notes that this takes place to raise awareness of epilepsy, the challenges that those living with the condition face and to promote greater understanding and inclusion; further notes, in particular, the employment challenges that can face those living with epilepsy; understands that it is the most prevalent of the main neurological conditions, with around 58,000 people living with epilepsy in Scotland; recognises what it sees as the importance of National Epilepsy Week to foster conversations and greater understanding amongst the general public of the condition and what to do when someone has a seizure; welcomes the work of local groups such as West Dunbartonshire Epilepsy Support Group and, nationally, Epilepsy Scotland, for what it regards as the vital social support services that they provide to those living with epilepsy, but notes the reported difficulties that they are facing through independently funding these services, and hopes for a productive and successful National Epilepsy Week.

17:30  

I am pleased to bring the debate to the chamber during national epilepsy week. I thank my colleagues for supporting my motion and participating in the debate.

National epilepsy week is dedicated to raising awareness of epilepsy and the wider challenges that those who are living with the condition face, and to promoting greater understanding, inclusion and support for those who are living with epilepsy. The theme this year is #BeyondSeizure.

In Scotland, there are approximately 58,000 people with epilepsy. It is, by some margin, one of the most common neurological conditions in the world. Despite that, however, people with epilepsy can often feel that their condition gets less attention than others. I know that many people would not know what to do if someone had a seizure in front of them. It is essential, therefore, that we, as politicians, use our position to highlight the condition and work to tackle stigma.

If you are with someone who is having a seizure, you should move them only if they are in danger; cushion their head if they are on the ground and loosen any tight clothing around their neck, such as a collar or tie, to aid breathing; turn them on their side after the seizure stops; and stay with them and talk to them calmly until they recover. You should also note the time that the seizure starts and when it finishes. It is important to recognise that no two people experience epilepsy in the same way. For one person, epilepsy can mean complete seizure control on medication, while for another person, it can mean uncontrolled and frequent seizures despite medication.

Epilepsy has various causes—it can involve an identifiable cause such as an acquired brain injury; developing epilepsy following a diagnosis of dementia; or genetic causes. In addition, people with Down’s syndrome, autism or learning disabilities are statistically more likely to have epilepsy. A study across the United Kingdom nations estimated that there are 49 new cases of epilepsy diagnosed in Scotland every day. The same study identified a connection with regard to an increased prevalence of epilepsy in areas of deprivation. People who are living in deprived areas are a third more likely to have epilepsy than those who are living in the least deprived areas. According to Epilepsy Scotland, that has also been shown in previous studies by other researchers.

That highlights the complex nature of the condition and how it can often be intertwined with other health conditions and social factors such as poverty. I commend Epilepsy Scotland’s welfare rights service for its work to reduce poverty by maximising people’s income, and I back the organisation’s calls for general practitioners who charge for completing an NCT003 form to stop the practice. A free bus pass should be just that—free. I ask the Minister for Public Health and Women’s Health to take an interest in the matter, if she has not already done so.

The impacts of epilepsy and the challenges that it brings are wider than just seizures. Epilepsy can result in mental health challenges; a feeling of social isolation; and feelings of stigma or judgment from others who do not know enough or who make assumptions. I was struck by one comment in a briefing that Epilepsy Scotland provided to me. It said:

“They don’t know because they lack the education of how to support someone who is epileptic and when they see you taking or not being well, they think that you have taken drugs. Sometimes they just leave you.”

That type of stigma can be debilitating and dangerous, so we must do more to challenge it.

Epilepsy can also impact sleep and memory and can, unfortunately, make it more difficult for individuals to find or remain in paid employment. According to the Office for National Statistics, only 34 per cent of working-age people with epilepsy are in employment. For those who are living with epilepsy, social support services that are provided by charities such as Epilepsy Scotland can be vital.

I thank the member for taking an intervention and for bringing the debate to the chamber. In February, Epilepsy Scotland had to stop the provision of in-person support in Aberdeenshire as a result of lack of funds. Fortunately, a private company stepped in to provide short-term funding so that the service could start again, just this month. Would the member agree that local health boards need to step up and provide funding for that vital service?

Absolutely.

For those who are living with epilepsy, social support services that are provided by charities such as Epilepsy Scotland can be vital, as they create a safe space for people to discuss their challenges free from stigma, and to access important information and guidance. Access to solid social support has been shown to help to reduce the use of clinical care, as people gain a better understanding of how to manage their condition and better mental health, and have support structures in place if they encounter crises. Those social services are essential, but I understand that funding them to continue can be challenging. I would welcome greater consideration at both national and local levels of funding for such services.

When I met the West Dunbartonshire epilepsy support group, I was interested to learn from its members about the possible positive benefits of medicinal cannabis for those who are living with the condition. I would be interested to see further research in that area, and greater consideration given to that option.

I take the opportunity to thank the West Dunbartonshire epilepsy support group and, nationally, Epilepsy Scotland. I also thank Brian and John of the West Dunbartonshire group for meeting me to tell their stories and increase my understanding of epilepsy. The group does commendable work to tackle social isolation and provide support to those with epilepsy, and it has my support. I thank Epilepsy Scotland for taking the time to meet me and provide me with helpful statistics and information. The social support services that the organisation provides to people across Scotland are vital. I also put on record my thanks to the Scottish Parliament cross-party group on epilepsy.

Individuals who are living with epilepsy possess an abundance of strength and resilience. They navigate a world that is not often accommodating of their needs, yet they persevere with confidence. Let us use our Parliament to amplify the voices of individuals with epilepsy and their stories, challenges and achievements. By doing so, we foster empathy, break down stigma and help to raise awareness of the condition among our society.

I urge all members in the chamber to take the time to do their bit, whether that involves raising awareness on social media or meeting constituents who have epilepsy. By doing so, we will create the inclusive and passionate country for which we strive.

17:38  

I thank Marie McNair for bringing this important debate to the chamber. This week, as she said, is national epilepsy week, which is an opportunity to raise awareness of epilepsy, in particular the challenges that those who are living with the condition can face. I am pleased to take part in the debate as convener of the cross-party group on epilepsy. I also do so as someone who has epilepsy, although thankfully it has been controlled via medication for many years now.

Epilepsy is one of the most prevalent neurological conditions nationally, with an estimated 58,000 people in Scotland being thought to have it. Unfortunately, however—as Ms McNair mentioned—it is still misunderstood by many, and its wider effects are often underestimated. There remain lingering misconceptions around the condition, some of which are relics of the very considerable stigma that attached itself to epilepsy until well within living memory.

Some of that lack of understanding affects those who are living with the condition in many ways, including in relation to the job market. According to figures from 2022, as we have heard, only 34 per cent of working-age people with epilepsy are in employment. In addition, 61 per cent of respondents to Epilepsy Scotland’s national survey last year said that their epilepsy affected their employment to some degree.

Much of that comes down to a serious lack of awareness, in particular on the part of employers, of what epilepsy actually is and how necessary adjustments to working practices can often very easily be made. In 2023, I was pleased to be involved in the launch of Epilepsy Scotland’s national survey, “Epilepsy on the Mind”, which examined the impact of epilepsy on individuals and their support network, in particular in relation to mental health. Although it is important to say at the outset that epilepsy is not—as was often assumed in the past—a mental illness, the study showed that 85 per cent of respondents believed that epilepsy had, nonetheless, impacted on their mental health, with half of respondents saying that they had anxiety and a third reporting that they had depression.

Many people who are living with epilepsy are not permitted to drive, for good reasons. As someone who grew up in, and now lives in, a rural area, I cannot stress enough what a serious obstacle that can present to both work and social life. In my case, I am fortunate enough now to be able to drive, although it has been commented that perhaps my driver’s licence should be restricted in its validity in some way to the Outer Hebrides. Nonetheless, it is important to ensure that those who have epilepsy can access the right support and advice to help them to overcome some of the problems around employment that I specifically mentioned.

In addition to the essential clinical care that is required by those who are living with epilepsy, the work of charities such as Epilepsy Scotland in providing social support is vital for improving the wellbeing of those with the condition. That involves facilitating access to the relevant resources and knowledge, counselling, peer-support activities and welfare rights assistance. That work helps to relieve pressure on the national health service in the long term, with studies showing that those who receive good-quality social support can manage their epilepsy better, and that they use fewer clinical and social care services as a result.

I commend Epilepsy Scotland and other third sector groups for the incredible work that they do to support those who are living with epilepsy, and for spreading awareness about the condition and its effects. During national epilepsy week, I encourage as many people as possible to learn a little bit more about epilepsy. Everyone can play a part in reducing the misconceptions that can needlessly and unfairly exclude so many people from the employment opportunities and social life that are so important for anyone’s mental health.

17:42  

I thank Marie McNair for raising this important issue in her members’ business debate. I also thank all the organisations and charities for the excellent work that they do to improve the lives of people with epilepsy. National epilepsy week is a time for us, as parliamentarians, to come together to raise awareness and extend our support to those who are living with epilepsy and to their loved ones.

Epilepsy is a condition that affects the brain and causes frequent seizures. Unfortunately, epilepsy is often misunderstood and stigmatised. A report from Epilepsy Scotland has shown that a third of those who are living with epilepsy experienced depression; 46 per cent admitted to having anxiety; and 54 per cent said that the condition had impacted their mental health.

According to Epilepsy Action, only 42 per cent of the working-age population of those with epilepsy are in employment. As the Trades Union Congress has noted, people with epilepsy earn, on average, 11.8 per cent less than their peers. However, we must remember that epilepsy is the most common neurological disease, affecting an estimated 50 million people worldwide; that includes 630,000 people in the United Kingdom and 58,000 people in Scotland. Epilepsy knows no age, gender, geographical location or socioeconomic background.

Although national epilepsy week cannot offer a cure, it helps to raise awareness of what epilepsy is. The first step towards helping those who are affected is to recognise the symptoms of a seizure and to know what to do when it occurs.

We must also use this week to challenge misconceptions and to break down barriers that prevent those with epilepsy from experiencing the joys of everyday life. I take the opportunity to recognise the work that is done by local groups such as the West Dunbartonshire epilepsy support group, which celebrated its 20th anniversary last year, as well as the Epilepsy Connections group and Carers of West Dunbartonshire, in raising awareness of epilepsy and providing those who are living with the condition and their loved ones with the support that they need. However, more needs to be done, especially on behalf of the Scottish Government. Karen Albrow of East Dunbartonshire, who is an unpaid carer and mother of a 17-year-old son with epilepsy, is struggling with getting support from the limited local services. With funding to local services having been cut, Karen worries that it will be challenging for her son to get through further education and become self-reliant.

As has been mentioned, those who are living with epilepsy often experience mental health issues. The onus is, therefore, on health boards to set up routine mental health screening in epilepsy clinics, with immediate referral to mental health support when it is required.

Those who are living with epilepsy are entitled to a bus pass. However, some GPs are charging between £10 and £40 to sign an official form that comes with the application for a pass. Public transport is a lifeline for many people with epilepsy, and imposing a fee risks cutting them off from the rest of the world. I would, therefore, like to hear the minister, when she is winding up, announce that that fee will be scrapped.

In conclusion, I reiterate my support for all those who are living with epilepsy. I am hopeful that members in the chamber can unite and work together for a future in which epilepsy no longer casts a shadow of stigma and fear.

I call Carol Mochan, who joins us remotely.

17:47  

I, too, thank Marie McNair for bringing this important debate to the chamber. On behalf of Scottish Labour, I welcome national epilepsy week 2024, and recognise—as other members have said—its importance in raising awareness of epilepsy and the challenges that are faced by those who are living with the condition.

As the motion states, and as other members have mentioned, epilepsy

“is the most prevalent of the main neurological conditions”,

impacting around 58,000 people across Scotland. It is right, therefore, that we use this week to draw attention to the condition and have conversations about epilepsy, and perhaps to have a look ourselves at what to do when someone has a seizure, which Marie McNair explained. Awareness of how to respond is key, and I pay tribute to Epilepsy Scotland and local epilepsy support groups in Ayrshire and Arran and across the South Scotland region for the work that they do. Their work in raising awareness and in providing individual and family support and care, and their level of expertise, are absolutely critical, and they are deservedly recognised in the motion.

I also thank our NHS nurses and doctors, and epilepsy specialists, who diagnose epilepsy, provide first-class healthcare and family support where it is required and respond in emergency situations, including when someone has their first seizure. As we all know, our NHS is under significant pressure, but the determination of our NHS staff to provide the best level of service is greater now than it ever has been, and it is right that members have recognised their contribution in the chamber today.

I turn to Epilepsy Scotland’s #BeyondSeizure campaign, and reiterate its broader points surrounding the wider impacts of epilepsy—as other members have highlighted—in respect of mental health, memory, feelings of isolation, employment and driving. As we know, epilepsy is not defined simply by having seizures; it is much more than that. It can completely change an individual’s day-to-day life, their abilities and their mental and physical health. Support must, therefore, not be restricted to raising awareness of seizures and how to respond—it must cover the other impacts that may not immediately come to mind for people.

Although I recognise the need for Epilepsy Scotland’s funding to match the service delivery that it provides and enable it to extend the support that it offers, I believe—as has been said many times by members across the chamber—that the Scottish Government has to reflect on how the third sector is funded. It is easy for the Scottish Government to pin responsibility on the NHS and local government, but in reality those bodies are absolutely cash-strapped as a result of decisions that have been made by Governments across the UK.

This is an important debate, and I believe that it has achieved its aim of raising awareness in the chamber of the wider impacts of epilepsy and the need for better resources to ensure that support can be delivered. Epilepsy is a topic that we must speak about more. The scale of its prevalence in Scotland and across the UK confirms that, and I hope that this national epilepsy week will go some way towards achieving that.

As I said, Scottish Labour welcomes Epilepsy Scotland and epilepsy support groups across Scotland and within the NHS, and we hope that this week helps to deliver some long-term stability and progress in the area. I thank all my colleagues for their contributions, and I thank Marie McNair once again for bringing the debate to the chamber.

17:51  

I, too, thank Marie McNair for securing the parliamentary time to mark national epilepsy week. Having experienced a grand mal seizure myself, I want to make a brief contribution, because it is so important to increase people’s understanding of this neurological condition and its impact on everyday life. I commend Dr Alasdair Allan for also sharing his story with us.

Having somewhere to share stories and experiences can be transformative for people who are living with epilepsy, and for their carers. I pay tribute to support groups such as Quarriers epilepsy community outreach, which has groups in Inverurie and Banff in my region, and a parents support group in Stonehaven.

After experiencing my seizure, it felt as though the whole world had fallen apart. I was told by my consultant that I might never work again. I could not drive or get to work, I could not go swimming and I could not ride my bike, which I did often. At that time, I also had to think very carefully, as I wanted to have children.

It felt as though I had lost complete control of my life and the freedom to live it in the way that I wanted to. I felt panic and fear as doctors worked to unravel the cause of what can be a complex condition. Fortunately, I was able to work—I was the head of a human resources department—but I know that not everybody in employment is as lucky as I am. I was grateful to my employers at the time for their support in helping me to get to and from work.

Last year, as we have heard, Epilepsy Scotland published “Epilepsy on the Mind”, a report on the impacts of epilepsy on mental health, which found that one in three people with epilepsy said that they have depression, half said that they have anxiety and one in four said that they have both. Those are sobering findings, and they reinforce why we must encourage conversations, like this one, about epilepsy. I was pleased to support Epilepsy Scotland’s call during mental health awareness week for health boards across Scotland to implement mental health screening in epilepsy clinics. That is very important.

Another finding in Epilepsy Scotland’s report that struck me was that 48 per cent of those who were surveyed were not in paid employment. Looking back at my experience, it was so devastating that I could have stopped work, but I was given support that really helped me to understand what the condition was, and I had very supportive employers—as I said, I am grateful for that.

More than 60 per cent of respondents to the survey thought that epilepsy had affected their employment prospects. That is true; among disabled people across the UK, people with epilepsy have one of the lowest rates of employment. When I saw that figure, I found it alarming, and it is one of the reasons why I felt that I had to speak in the debate. I share Epilepsy Action’s ambitions for more support to help people with epilepsy to find and stay in work. As a society, we must do better in that regard.

I have one final reflection. As co-convener of the CPG on medicinal cannabis, I have heard some really difficult stories of parents desperately trying to secure medicinal cannabis oil to ease the symptoms of their children with epilepsy. We seem to be going round and round in circles on that issue, and we need to find an answer to it. The UK Government has rescheduled certain cannabis-based products for medicinal use. More than five years on from that change, we need to address the barriers to prescribing those products.

17:55  

I did not intend to speak, but on listening to the contributions—and having read the epilepsy briefing that was sent to us by Andrew Lindsay ahead of the debate—I thought that I would jump to my feet. I thank Marie McNair for bringing the debate to the chamber.

On reading the briefing, I was surprised by the additional items on depression, anxiety, obsessive-compulsive disorder and post-traumatic stress disorder; Pam Gosal mentioned depression and anxiety. It is an important issue. Briefing papers to us in the Health, Social Care and Sport Committee also included something about raising awareness on anxiety and depression in persons with epilepsy.

I am a type 1 diabetic. As part of my care, about once a year, when I go to my doctor’s appointment they give me a self-assessment tool for depression and anxiety, because those are higher in type 1 diabetics. The self-assessment that is used is the hospital anxiety and depression scale—the HADS scale—which uses the scale 3, 2, 1 and zero to assess the level of anxiety and depression.

I am also co-convener of the lung health cross-party group and the diabetes cross-party group, where we have had discussions on the assessment of anxiety and depression in people with chronic obstructive pulmonary disease, as well as persons with diabetes.

I just want to raise awareness of assessment tools such as the HADS, and I seek to make sure that people who self-assess know that they can access a healthcare professional if they score highly on a scale that might indicate that they need to do so. I would be interested to hear from the minister any comments on self-assessment—including, crucially, the need for people who act on any self-assessment scale to know when they should seek assistance and support.

17:58  

I am delighted to respond on behalf of the Government as we mark national epilepsy week. I extend my thanks to all members who have spoken for their thoughtful contributions, and to Marie McNair for lodging what is an important motion. As she has said, it allows us to amplify the voices of those who live with epilepsy.

I recognise how debilitating epilepsy can be and the importance of high-quality, accessible care for people who live with the condition. It has been sobering to listen to the wide array of difficulties that people can experience, and I agree with Tess White and Alasdair Allan that the ability to share stories here can be transforming. I thank them both for sharing theirs.

I express my gratitude to our third sector partners for their communication of the challenges that are faced by people who live with epilepsy, and for their commitment and desire to work with us to further develop integrated and person-centred care.

Would you be willing to meet me and my co-convener, Pauline McNeill, to talk about the issue that I raised? One mother has had to crowdfund to treat her child’s epilepsy. I think that she pays about £2,000 a month because the treatment is available only on private prescription. We have been going round in circles, so would you be willing to meet to have a discussion to see whether we can chart a way through?

Always speak through the chair.

I thank Tess White for her intervention. I would be happy to meet her and Pauline McNeill, as co-chairs of the CPG.

It is fair to say that it has been a productive year since our previous epilepsy debate, and I am delighted to update members on the progress that we are making in supporting projects and developing work to improve outcomes for people with the condition. Since the introduction of our neurological care and support framework in 2020, we have committed almost £650,000 to projects that improve the health and wellbeing of people with epilepsy, despite the pressure on Scottish Government priorities.

The work that is being funded is wide in scope and has delivered direct improvements in care, such as through supporting Epilepsy Scotland to work with NHS Lothian on piloting mental health screening and interventions for people with epilepsy. We have funded Epilepsy Connections to test a partnership model of delivering dedicated online and phone counselling, and we have funded work by Quarriers to deliver community outreach support and epilepsy awareness workshops, and to develop a programme that empowers people with epilepsy to make informed decisions about their own care and increases their capacity for self-management.

I am also delighted that we have continued to invest in the development of a Scottish epilepsy register, to improve delivery and access to care across the country. The register alerts clinicians to patients who may need a review or care intervention—for example, following an accident and emergency attendance—and seeks to improve epilepsy care in pregnancy. It will also provide crucial data for service improvement, audit and research. The register is a key objective in improving the safety and quality of care for people with epilepsy, and we are currently supporting its further adoption across Scottish health boards.

We have heard a lot—

Will the minister take an intervention?

I would like to touch on some of the points that have been raised, including the point that I think Douglas Lumsden is going to raise.

I absolutely recognise that the third sector needs stability and the opportunity for longer-term planning and development. We are committed to developing a fairer funding approach for the third sector. Regrettably, the on-going economic circumstances present additional challenges, which means that we were not able to take forward multiyear funding to the extent that we would wish in this financial year. However, we will continue to progress fairer funding arrangements, including by exploring options to implement multiyear funding, which will help to enable the third sector to secure greater resilience and capacity. I am not sure whether that is the area that Douglas Lumsden wanted to come in on, but I will give way.

I thank the minister for taking my intervention, which is on this area. When the minister was speaking, it sounded as though everything is rosy, but on the ground, in Aberdeenshire, it is very different, with in-person support closing due to lack of funds and the private sector having to make that up that support. I do not think that the complaint from Epilepsy Scotland was about multiyear funding for in-person support; it was that there is no funding at all.

The Scottish Government is currently working with Epilepsy Scotland to look at its sustainability model, so I hope that that gives Douglas Lumsden some comfort that we are working closely with that organisation.

A number of members also raised the issue of employment. I absolutely recognise that there is a gap between disabled and non-disabled people in the labour market, which remains too high. The Scottish Government remains committed to at least halving the disability employment gap in Scotland by 2038 from its 2016 level. We invested £108 million in employability services last year, providing intensive and personalised pre-employment and in-work support for unemployed disabled people and those with health conditions or other barriers to progressing in work.

Marie McNair, Alasdair Allan and Pam Gosal all highlighted the issue of bus passes. My officials are in discussion with Epilepsy Scotland to explore more options around improving access to concessionary travel. The decision to charge for the signing of such forms is a matter for the GP practices because that is not covered in the GP contract. However, we are exploring other possible solutions.

We have heard about how epilepsy can have profound impacts on people’s mental health and the social barriers that it can create. I assure members that the Government has a vision of a Scotland that is free from stigma and inequality, where everyone fulfils their right to achieve the best possible mental health and wellbeing. I know that members across the chamber share that vision, as we have heard from many of the contributions to the debate.

I am pleased to say that we have committed £213,000 over two years to support work by Epilepsy Scotland to improve the mental health, social connectedness and self-management skills of children and young people with the condition. That funding has been provided through the children, young people, families and adult learning fund.

I note the findings of Epilepsy Scotland’s 2023 “Epilepsy on the Mind” report, which Alasdair Allan spoke about. Jointly with the Convention of Scottish Local Authorities, we have published a new mental health and wellbeing strategy, which focuses on outcomes, with an increased focus on wellbeing and prevention.

I thank members who have shared stories and experiences in their contributions today. I know that they will need no reminder of the current challenges that are faced by projects across the Government. Despite those challenges, we are making substantial progress, but we have a distance still to go. The work that we have supported through the neurological care and support framework has made a significant contribution to improving services for people with epilepsy in Scotland. Our focus is now on building the networks to drive local and regional improvements.

I recognise the dedication of those who are impacted by epilepsy and the professionals who are involved in their care, who are all working with us to make a difference. This national epilepsy week, I commend the tireless commitment of Scotland’s epilepsy charities in supporting people through the physical and emotional challenges that their condition brings. I agree with Carol Mochan that we should also pay tribute to NHS Scotland staff across our health boards. I assure members that we will continue to work with those with lived experience and our third sector and clinical partners to nurture the relationships that we have developed and to build on our existing achievements to maximise the quality of life of people living with epilepsy across Scotland.

Meeting closed at 18:07.