Meeting of the Parliament

Meeting date: Tuesday, June 27, 2023

Official Report 962KB pdf

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Epilepsy

The final item of business is a members’ business debate on motion S6M-09507, in the name of Alasdair Allan, on the Epilepsy Scotland report “epilepsy on the mind”. The debate will be concluded without any question being put.

Motion debated,

That the Parliament recognises the findings of the Epilepsy Scotland report, Epilepsy on the Mind, on the impact of epilepsy on mental health, which was published on 16 June 2023; understands that epilepsy is a condition that it is estimated 58,000 people in Scotland, including people in Na h-Eileanan an Iar, are living with, making it one of the most common serious neurological conditions; recognises that this report, which followed a national survey undertaken by over 700 people with epilepsy in Scotland, highlights, in particular, that 54% of responses said that epilepsy has a “significant impact” on their mental health; further recognises that 46% of responses said that they have anxiety, and one in three have depression; notes the recommendation that there needs to be wider-reaching, epilepsy-specific mental health support available in Scotland, and for there to be greater societal understanding, including by employers and education establishments, of epilepsy and how it can affect a person’s life; commends Epilepsy Scotland for its work in conducting the survey and creating this significant report, and considers that the report’s recommendations can improve the lives of people with epilepsy.

17:13  

I welcome this chance to highlight to Parliament the hugely important work that Epilepsy Scotland does as an organisation. Specifically, I want to mention the research and recommendations that it recently published on the impact of epilepsy on mental health.

Epilepsy is not an uncommon condition, and yet it continues to be very commonly misunderstood, and those misunderstandings often have a real impact on many people’s wellbeing. It is important, therefore, to make one distinction from the outset: epilepsy itself is not a mental illness. Much of the stigma that has, in the past, been applied to epilepsy has, in fact, been grounded in that very equation of those two things. It is a misunderstanding that, 150 years ago, stepped neatly into the space that was then just being vacated by earlier public assumptions that had placed epilepsy firmly in the supernatural realm.

Such widespread public ignorance of what epilepsy might be is complicated further by the fact that the condition takes so many widely varying forms. In any case, Epilepsy Scotland’s survey has shown us that 54 per cent of people with epilepsy feel that their condition has

“had a ‘significant impact’ on their mental health.”

One in three people reported depression and half described anxiety. A lack of awareness among the public is but one of the factors that lie behind those very concerning figures.

I will highlight just one of those issues, which is something that people in urban Scotland might recognise perhaps less than those in rural areas. Somebody losing their driving licence, which is a requirement for anyone whose symptoms are not controlled, means that their chances of finding employment, or at least employment that uses all their talents, decline very steeply. The survey found that 61 per cent of people described epilepsy as having had an impact on their employment.

Employment, or the lack of it, is, in turn, a factor that drives a sense of isolation. Again, the report bears that out, with 72 per cent of people reporting that epilepsy had affected their social life. One case study, Nicola in Orkney, had this to say:

“I really struggled with losing my driver’s licence. I lost all my independence and really had to rely on other people to take me places because we weren’t really on a bus route. So it was a case of making sure I had a lift from”

my

“partner ... or my mum or dad. They were really good ... but ... I hated asking all the time.”

I developed epilepsy when I was 17. I hesitate to claim that epilepsy had any direct effect on my own mental health—I was possibly not even fully aware of the issue, because I do not recall mental health even being a widely understood concept in those days. However, it was probably because I was very fortunate. At the worst point of my condition, I generally had only about eight or nine seizures a year—far fewer than many other people—and, after a process of medical guesswork, medication eventually bought my symptoms completely under control after about 15 years.

I am not quite certain that, when I was young, I treated my condition with the respect that it deserved, which was probably due to the pretty limited information that was then available to me about it and the only very occasional opportunities that I ever had to meet anyone who might remedy my ignorance.

My own seizures included one that happened when I was working on a ship, while another seizure conveniently gave me just enough warning for me to jump off my bike. One happened in a pub, before I had even had time to order a pint. Another happened doing a job interview, in which—I am pleased to say—I gained employment. One took place in a student political meeting, in which, I understand, debate raged during the several minutes of my unconsciousness as to whether or not someone should raise my hand to vote for me, there being quite a close vote at the time. One seizure occurred during some very misjudged hitchhiking through a war zone and resulted in my coming to in a Croatian military hospital, with no ill effects.

I am pleased to say that, since the days of my youth, the sources of information and support for people with epilepsy in Scotland have increased dramatically, in no small measure due to the work of Epilepsy Scotland, representatives and members of which are in the public gallery, as well as through the work of Scotland’s national epilepsy centre.

Epilepsy Scotland has, for instance, a helpline service that includes check-in calls. Officers with counselling qualifications will call someone once a week for 10 weeks to let them talk about their worries and any issues related to their epilepsy. However, there remains a huge amount still to be done, as Epilepsy Scotland’s report has now shown us.

The report concludes with some important recommendations, and I hope that the Minister for Public Health and Women’s Health may be able to reflect on some of them in summing up, in the light of the Government’s commitment to step up support for mental health services more widely.

Among those recommendations are the need to continue to grow

“the number of mental health-trained professionals (including counsellors) available to people ... with epilepsy and to increase the level of understanding of epilepsy amongst those working in mental health services ... To increase the number of in-person support groups for people living with epilepsy and their families ... For”

all agencies

“to work collaboratively to create a strategy to improve the mental health of people living with epilepsy ... to increase public awareness of epilepsy to the wider public for improved societal understanding”

and

“To ask health boards ... to consider steps for routine screening of mental health issues in epilepsy clinics with immediate referral to mental health support where required.”

I take the opportunity again to commend the work of Epilepsy Scotland—a sentiment that I know will be shared by the cross-party group on epilepsy in this Parliament. In particular, I draw attention to the work that Epilepsy Scotland has done in its report. The report highlights effectively how epilepsy is a condition with a very human impact on very real people.

17:19  

I thank Alasdair Allan for bringing the debate to the chamber, and I acknowledge the good work that he does as convener of the cross-party group on epilepsy.

Having this kind of conversation in the Parliament sends a clear message that we care, we are on your side and we are committed to working with you to improve the rights of those who are living with epilepsy.

I, too, thank Epilepsy Scotland for its work, and I welcome representatives of the organisation, and some of its members, to the public gallery. It is so important that we have active and motivated organisations to work on behalf of groups that can often feel that they are being left behind.

The report that we are discussing sheds light on the fact that it is crucial to recognise that the disabilities that individuals face are not the sole aspect requiring attention—the mental health of those individuals needs equal consideration. Disabled individuals often encounter significant emotional and psychological challenges as a result of the stigma, isolation and limited accessibility to services. The impact of those factors on their mental wellbeing should never be overlooked.

It is so important that we recognise and address the mental health challenges that are faced by individuals who are living with epilepsy. Although epilepsy is primarily a neurological condition, it also takes a toll on a person’s emotional wellbeing. According to figures from the report, more than one in three people with epilepsy in my region of Lothian struggle with anxiety, and the same number report that they deal with depression. Those numbers are heartbreaking.

Despite the growing awareness of the importance of mental health, there remains a significant gap in the support and resources that are available for individuals with epilepsy. In order to truly address their mental health needs, we must prioritise specialised mental health services that are tailored to the unique challenges that are faced by this part of our population.

The report makes a number of excellent recommendations on how we can begin to close that gap in support. One such recommendation suggests implementing

“routine screening of mental health issues in epilepsy clinics”

and facilitating

“immediate referral to mental health support”.

That would be a simple, yet immensely positive, step for health boards across Scotland to take. Such an approach would ensure that mental health concerns were not left untreated or undetected, which would lead to improved overall wellbeing and better management of epilepsy. Swifter referral to mental health support services would offer timely interventions, which would allow individuals to receive the necessary assistance and support tailored to their specific needs.

That easy and proactive measure has the potential to significantly enhance the holistic care that is provided to individuals with epilepsy, ultimately fostering better mental health outcomes and a higher quality of life for individuals.

All the recommendations in the report promise to make life better for those with epilepsy. I hope that we can get a commitment from the minister tonight, in her closing speech, that the Government will commit to rolling them out—not in a decade’s time, but with urgency and in the current session of Parliament.

17:23  

I, too, welcome members of Epilepsy Scotland to the public gallery. I am grateful to Alasdair Allan for bringing this important debate to the chamber and providing us with an opportunity to mark the publication of Epilepsy Scotland’s report “epilepsy on the mind”. The report has laid bare the impact of epilepsy on mental health, marking a crucial milestone in our understanding of this complicated condition.

Epilepsy is one of the most common serious neurological conditions. It impacts on an estimated 58,000 individuals across Scotland, each of whom is living with a very complex condition that can strike unpredictably, and which carries immense implications for their daily lives. In my constituency of Kirkcaldy, there are more than 800 people living with epilepsy, and there are an estimated 4,000 people living with the condition across the whole of Fife.

The physical implications of epilepsy are well known. However, we must consider not only the physical manifestations of epilepsy, but its psychological impact. It is a matter of urgency that we recognise the intertwined relationship between epilepsy and mental health.

The “epilepsy on the mind” report, based on a comprehensive national survey involving more than 700 participants with epilepsy, reveals that 54 per cent of respondents reported

“a ‘significant impact’ on their mental health”.

Those are not insignificant numbers, and we must not treat them as such. Moreover, the report tells us that 46 per cent of those individuals struggle with anxiety and that one in three grapples with depression. We need to acknowledge that stark reality and do more than just sympathise; we need to take meaningful action. The mental health repercussions of epilepsy are not a secondary condition but an integral part of a condition that deserves our attention as influential policymakers.

As deputy convener of the cross-party group on epilepsy, I have had the opportunity to meet and hear from organisations and stakeholders across Scotland about what we can do to better support those who live with epilepsy, including making sure that their mental health is prioritised. Those groups have made invaluable recommendations to the CPG, and I know that the Scottish Government takes those recommendations very seriously in its work to provide support for people throughout their experience of living with the condition, from the point of diagnosis onwards.

Epilepsy Scotland’s recommendations on the need for wider-reaching epilepsy-specific mental health support in Scotland are crucial. We are being called to action to extend our understanding of epilepsy beyond the seizures, to comprehend how it can pervade all aspects of an individual’s life. This is about not simply allocating more resources for mental health services but creating a mental health service that is tailored and specific to the needs of people with epilepsy.

We know that the pandemic and the cost of living crisis have had a significant impact on mental health and wellbeing across Scotland, and it is reassuring to know that improving mental health is a priority of the Scottish Government. I very much welcome the Scottish Government’s significant boost to mental health spending, including thousands of grants to grass-roots community organisations that provide targeted support, including to people with epilepsy. That funding, combined with the Scottish Government’s investment in epilepsy, including specialist diagnostic tests, treatment options and on-going care, is creating a landscape in which the mental health of people with epilepsy can be prioritised. The Scottish Government’s support to Epilepsy Consortium Scotland is also invaluable, as it raises awareness about how we can best support people with epilepsy.

That brings us to another vital point in the report: the role of societal understanding, particularly among employers and educational establishments. Epilepsy should be neither a barrier to opportunities nor a cause for discrimination. We must work towards creating an inclusive society that not only accommodates but empathises with people with epilepsy and understands the challenges that they face. That means providing appropriate support in the workplace and educational institutions, to ensure that awareness and understanding are embedded in every aspect of our society.

We must commend Epilepsy Scotland for its work in conducting the survey and creating a significant report. Its dedication and commitment to improving the lives of people with epilepsy are commendable, and we need to ensure that its findings and recommendations do not go unnoticed. The findings of the report cannot be just another statistic. They are a call to action—a call for a more comprehensive healthcare service, for greater societal understanding and for a renewed commitment from all of us to ensure that the lives of people with epilepsy in Scotland are not defined by their condition. This is an opportunity for us to reshape our approach and build a Scotland that not only recognises the impact of epilepsy on mental health but actively works towards providing comprehensive and personalised support for every person who lives with epilepsy.

17:28  

I, too, thank Alasdair Allan for bringing the debate to the chamber and Epilepsy Scotland for publishing the report and providing a briefing ahead of this evening’s debate. I welcome representatives of Epilepsy Scotland to the gallery.

It is right that we debate this matter. The report shows the level of agreement among people from across Scotland who live with epilepsy that having the condition leads to detrimental impacts on mental health. They raise an important point. When reading some of the additional points that were made by those who participated in the survey, I found comments that suggest that even the strongest people can still be suffering inside.

The challenges that come with epilepsy are faced not just by the individual but by the whole family. Although there is a recognition that epilepsy is much more than a seizure, the constant fear of having seizures can be very challenging for individuals and their families.

The fact that 85 per cent of people feel that epilepsy impacts their mental health in a small or significant way should be a concern for us all, as members across the chamber have said. I am confident that the minister recognises the seriousness of the issue and will look to improve specific areas that the Scottish Government can work on to address it.

As we heard, one in three people with epilepsy say that they have depression, almost half have anxiety and a quarter have both. Each figure represents an individual with a family and a life. Those figures are quite stark, and they highlight the debilitating nature of the condition, which affects the mental health and wellbeing of individuals and their families and causes them to suffer.

At this juncture, it would be remiss of me not to remind members that there have been calls to increase mental health spending to 10 per cent of the national health service budget and that commitments have been made. We accept that there are budgetary pressures, but it has been evident for some time that the crisis in mental health and wellbeing will be the next significant challenge to face our population. Clearly, those impacts are already being felt across the country, especially, as has been highlighted, among groups of people with particular conditions, one of which is epilepsy. Not meeting those targets would be a major failing on the part of this Government. The request to reprioritise funding allocation is well intentioned, but it is urgent, so we ask the minister to make that point.

I note with interest the very apt and reasonable recommendations in Epilepsy Scotland’s report. I think that everybody has mentioned that all those recommendations are very reasonable. As we have heard, the calls include asking the Government to increase the number of mental health-trained professionals, including counsellors, who are available to people living with epilepsy; to increase the level of understanding of epilepsy among those working in mental health services; to increase the number of in-person support groups for people living with epilepsy and their families across Scotland; and to have collaborative working between mental health and epilepsy charities to develop key policies in that area. Those asks are timely and, in my view, reasonable, and I hope that they will be reflected in the minister’s comments.

I am pleased that we have been able to have this debate. Much of the data from the report is concerning and the situation is critical. As my colleague David Torrance mentioned, it is important that we have an opportunity to discuss it. People living with epilepsy have spoken loudly and clearly, based on their lived experience. It is our responsibility as legislators to take that seriously, bring it to the Parliament and ask the Government to act.

17:32  

It is a privilege to be asked to close today’s debate. I extend my thanks to all members who have spoken for their thoughtful contributions, and to Alasdair Allan for raising this important issue and sharing his personal experiences. I welcome members of the public to the gallery, as well as representatives from Epilepsy Scotland. I also note the important work that the cross-party group does.

The findings of Epilepsy Scotland’s “epilepsy on the mind” report are stark. The report, along with the experiences and stories of constituents that members have shared in the debate today, really emphasise the impact that epilepsy has on the mental health of those who live with it and, as Carol Mochan rightly commented, on their wider families.

It is sobering to hear that one in three respondents to Epilepsy Scotland’s survey has depression. I was particularly struck by the fact that 62 per cent of respondents thought that having epilepsy had impacted their employment prospects. I recognise the example that Alasdair Allan gave of someone losing their driving licence in a more rural constituency, and I will reflect on that.

Tackling the disability employment gap is an integral part of our vision for Scotland to be a leading fair work nation by 2025, where fair work drives success, wellbeing and prosperity for individuals, businesses, organisations and society. Improving the employment prospects of those with epilepsy is very much part of that approach, and Epilepsy Scotland’s report shows us why that is very much needed.

As others have said, an estimated 58,000 people in Scotland are living with epilepsy, making it one of Scotland’s most common neurological conditions. Alasdair Allan’s motion acknowledges that the condition affects people across Scotland, including in his constituency of the Western Isles. When considered alongside Epilepsy Scotland’s striking statistics about the impact of epilepsy on the mental health of those living with the condition, those facts starkly illustrate just how much work there is to be done and how urgent and important that work is, as Jeremy Balfour highlighted.

The actions that are recommended by Epilepsy Scotland in “epilepsy on the mind” are well thought through, and I agree with Carol Mochan that they are reasonable and can improve the lives of people with epilepsy. The recommendations give me, officials and the third sector much to think about, which I commit to doing.

I am pleased that we are already taking action to improve the lives of people in Scotland with epilepsy and other neurological conditions. We are doing that by delivering the improvements that are set out in “Neurological Care and Support in Scotland: A Framework for Action 2020–2025”. The aims include improving the provision of co-ordinated health and social care and support, developing sustainable workforce models and ensuring high standards of person-centred care for those with neurological conditions. We are investing £4.5 million over the course of the framework to achieve that vision.

Since October 2020, we have invested nearly £325,000 in projects that improve the health and wellbeing of people with epilepsy in Scotland. Those projects include establishing an epilepsy register in NHS Greater Glasgow and Clyde, NHS Lanarkshire and NHS Tayside, with the ambition to scale up nationally to drive up standards of care. Another crucial element is a programme developed by Quarriers to improve the capacity of people with complex epilepsy to self-manage their condition and increase their resilience and confidence.

I know that members will need no reminder of the challenges faced by projects across Government and the third sector that have been posed by the pandemic and the cost of living crisis but, despite that, we are making substantial progress. The projects that we have funded in the first two and a half years of the neurological framework have made a significant contribution to improving services for people in Scotland with neurological conditions. We have made particular progress on our commitments to improve patient and carer information, to ensure better integration of services and care pathways and to provide practical tools for workforce capacity planning. With the right commitment, as our NHS continues to recover, I believe that our progress in those areas will bring about lasting changes to neurological services across Scotland, making care better for everyone with a neurological condition.

Now, in the latter two and a half years of the framework, we need to consolidate and build on those new approaches. We need to build networks to facilitate improvement locally and regionally and remain receptive to local need while ensuring that we have a consistent national picture of how services are performing.

I take this opportunity to put on record my thanks to Epilepsy Scotland for the valuable work that it does in supporting people in Scotland who live with epilepsy. Epilepsy Scotland and other third sector organisations continue to work tirelessly to support people with neurological conditions, despite unprecedented challenges and uncertainty.

Third sector organisations are a vital part of the healthcare landscape. It was my privilege recently to meet the Neurological Alliance of Scotland and hear first hand from member charities about the issues that their organisations face and the people they support. Attendees advocated for people with many different neurological conditions, but there was clear unanimity on themes such as the need for people who live with neurological conditions to have access to better integrated and person-centred care, concerns about waiting times and the need for pathway and service development. I was hugely impressed by the breadth of experience in that virtual room, by the clear passion and sense of vocation for improving the lives of people with neurological conditions and, importantly, by the willingness to collaborate across the third sector and with the Scottish Government to achieve lasting and meaningful change.

The Scottish Government will, in that vein, work collaboratively with Epilepsy Scotland and other third sector organisations to support them through the difficult times and ensure that they are on a strong and sustainable footing that will enable them to continue their work that benefits so many people in the years to come.

In closing, I once again commend Epilepsy Scotland for producing “epilepsy on the mind”. I recommend that all members read the report and absorb its findings. I give a commitment that the Scottish Government will continue to listen to the experiences and human stories of those with epilepsy. We will continue working with people with lived experience, third sector partners such as Epilepsy Scotland, and clinicians to achieve real and lasting changes that improve the lives of people in Scotland with epilepsy and, as David Torrance said, to make Scotland an inclusive society.

Meeting closed at 17:40.