Epilepsy and Employment

Epilepsy has now emerged, I hope, from the outright prejudice and superstition that surrounded the condition within living memory, yet people with epilepsy continue to face barriers in employment.

Epilepsy Scotland has carried out research on epilepsy and employment, which I know the Minister for Just Transition, Employment and Fair Work, Richard Lochhead, has already taken an interest in, and on which he commented during his recent participation in the cross-party group on epilepsy. I welcome that interest, and I look forward to hearing the minister’s comments in summing up today.

People with epilepsy are very significantly less likely to be in employment than are the general population, so let me begin by mentioning a few relevant statistics. While the disability employment gap for people with disabilities in general is only slightly higher in Scotland than it is in the United Kingdom, the real differences lie at a local level. The gap ranges from barely 8 percent in some communities to 50 per cent in Na h-Eileanan an Iar, my own constituency. Rural areas appear to face particular challenges.

Only 36.9 per cent of people with epilepsy in the UK reported being in employment, compared with 81.3 per cent of non-disabled people. That represents an employment gap of 44.4 percentage points for people with epilepsy. In fact, the annual population survey for the UK shows that people with epilepsy are one of the least likely groups to report employment relative to all people with a disability of any kind.

Epilepsy Scotland is therefore seeking to challenge and support employers to overcome continuing mistaken assumptions. In case that sounds like a lecture to employers, I should say that I have no reason to believe that employers’ ideas about epilepsy are any more mistaken than those of the population at large. To lump all people with epilepsy together risks completely failing to understand their hugely differing needs and their unique talents.

A great proportion of people with epilepsy have the condition either entirely or virtually entirely controlled by medication—I fall into that category myself—and they may have lived completely free of seizures for many years. Yet it seems that some employers continue to view people with epilepsy as a risk—as being at risk of accidents, with presumed risk of litigation. In fact, as the research highlights, there is no evidence at all to show that people with epilepsy present any greater risk.

Perhaps the most concerning finding presented by the research is that there may be a psychological impact of the ignorance of others on some people with epilepsy themselves. In cases where people experience repeated rejection in the workforce, they sometimes develop a limited estimation of their own abilities.

I am personally very lucky, in that I have had fairly understanding employers. I once had a seizure towards the end of a job interview and still somehow managed to get the job. Looking back to another job—not in politics—I had a less positive experience. I had a seizure at work and I remember my employer complaining, as I recovered, that I was not compos mentis. I did not think of that as much more than a statement of the obvious, while I was groggily coming to. It only later became clear to me that he meant something else entirely: he thought that having a seizure was presumably only one symptom of many more to come of what he misunderstood epilepsy to be—namely, a psychiatric condition. I do not dismiss the possibility that I may not, more generally, always be compos mentis, but I hesitate to attribute that fact to any neurological cause. Public misunderstandings about epilepsy mean that some people have to contend with all the prejudices that surround mental illness when they do not even have a mental illness.

Since I indicated that I would bring the debate to the Parliament, I have heard from people who have encountered varying problems at work. One man who works in a supermarket told me that he does well in his job, which he has held for a number of years. The supermarket apparently forgot that he had a medical condition, although his epilepsy had been previously and formally drawn to the supermarket’s attention. As a result, it failed to take into account his epilepsy when he complained about bullying. He said that new team leaders in his store were not aware that he had a disability.

Such examples show that not all employers are even aware that staff members have epilepsy and far less do they make reasonable adjustments for staff because of that. As a result, people with epilepsy are often underemployed and working in low-skill jobs.

I have concentrated on some of the problems, but I hope that members from across the Parliament will also see the debate as a chance to outline positive ways forward. We could agree on, for instance, the need to improve the detail of the statistics that are available to us for measuring the problem and trying to get to the bottom of the reasons for the huge local variations.

Above all, we can commit to ensuring that a wider understanding of epilepsy permeates our schools, business organisations and colleges. We can highlight and support good practice where it exists. We should recognise that, as a country, we are not drawing to anything like the extent that we could on the talents of people with epilepsy. That means not only that people with epilepsy are missing out economically and socially but that our economy as a whole is missing out, too.

Many organisations across Scotland, such as Neuro Hebrides in my constituency, do great work in empowering people with epilepsy. I hope that the debate and the work that Epilepsy Scotland is doing will help to empower people with epilepsy in one very specific way—in workplaces across Scotland.

I thank Alasdair Allan for securing this important members’ business debate. Before I go into the body of my speech, I would like to state that I will be discussing a member of my team and that I will be doing so with her full knowledge and blessing.

Epilepsy is one of the most common neurological conditions in the world, with the World Health Organization estimating that the condition affects around 50 million people worldwide. In Scotland, it is estimated that around 55,000 Scots are affected by the condition. It is important to note that anyone can develop epilepsy at any time in their life; eight people develop the condition each day.

It has been shown through Epilepsy Scotland’s research that there are significant gaps in data and in our understanding of the impact of epilepsy, and that employers right across the country still have poor awareness of the condition and tend to often have negative views about the abilities of individuals who live with epilepsy—we heard about that from Alasdair Allan—which leads to a situation in which the employment rate of those who live with epilepsy is just under 37 per cent.

Under the Equality Act 2010, individuals who live with epilepsy, as well as those with other medical conditions, are protected from unlawful discrimination in the workplace. When an individual with epilepsy applies for a job, the employer cannot reject their application from the outset, with the exception being the armed forces. It is important to note that, through the 2010 act, there is a duty on UK employers whereby, if a person with epilepsy is the best candidate for the job, the employer must carry out risk assessments based on the individual’s seizures and, where any risks are identified, the employer has a duty to make reasonable adjustments, where possible, to allow the individual to perform their work tasks.

One of my office team lives with epilepsy, so I am fortunate that she has been able to advise me of how the condition affects her. Gemma was diagnosed with photosensitive epilepsy at the age of nine and has lived with the condition since then. Gemma worked part time while studying at university. She informs me that, when she declared to her employers that she had epilepsy, they were more than understanding but that, once she actually started working, she found that some of her colleagues treated her differently when they found out that she had epilepsy.

When Gemma joined my team and told me that she suffered with epilepsy, I asked whether there was anything that I could do to support her. Her response was quick. She said:

“I do not want to be treated with kid gloves and be treated like a child; I want to be treated like everyone else. When I mention to folk that I have epilepsy, I see the nervousness and uneasiness of individuals and then I am later treated like a child. I don’t want my epilepsy to define me and my ability to do my job.”

I took her at her word. I hope that Gemma feels as supported in my constituency office in Aberdeen Donside as she is at home.

Gemma’s mam, Donna Clark, has just raised funds for Epilepsy Action by walking more than 50 miles in February. Knowing Donna as I do, I was not surprised that she had to go that wee bit extra and ended up doing more than 150 miles for the charity. I say well done to Donna. I believe that the charity has raised more than £440,000 so far and the money is still pouring in.

I am fortunate that I can, and am, willing to learn more about epilepsy, not only about how it affects Gemma but how it can affect others who live with it. I can learn what to do in the instance of someone having a seizure.

Although Gemma has felt comfortable disclosing to me that she has epilepsy, others may not feel as comfortable about disclosing that to their employer, which in turn would mean that they would miss out on the opportunity to have the reasonable adjustments made that would benefit them.

Although employment law is still reserved to Westminster, it is critical that the Scottish Government does more to help raise awareness of epilepsy and to show those living with epilepsy that their condition does not define them and does not limit their abilities within the workplace.

I congratulate my colleague Dr Alasdair Allan on securing debating time this evening. As a former convener of the cross-party group on epilepsy, I am delighted to participate in this debate.

Unfortunately, although some headway has been made in recent years, figures that Epilepsy Scotland has released show that we must make greater strides to reduce the disability employment gap, including in North Ayrshire, where my constituency is based. Its council is in the 20 per cent of local authorities across the UK with the highest gap.

Some of the Epilepsy Scotland client wellbeing experiences are deeply concerning—notably the fact that more than half said that they struggle with their mental health, which is caused by a lack of employment or issues within employment. Most alarmingly, that included one client who reported being filmed while having a seizure at work and being the subject of a complaint, as colleagues thought that they were sleeping. Such incidents show that we still have a long way to go to increase the general public’s understanding of epilepsy.

Many people with the condition say that being ill informed causes fear and that, if people knew more about epilepsy, they could deal with it better. When I led a members’ business debate on epilepsy and education eight years ago, I highlighted that, even as treatments and medications have evolved and improved, understanding of epilepsy among the general population has remained sadly and steadfastly very low, and that

“with that lack of understanding has come stigmatisation from some quarters and a feeling of exclusion for the people who live with epilepsy.”—[Official Report, 20 May 2014; c 31227.]

Better understanding could indeed be transformative for people with epilepsy and their experience of the world of work.

Epilepsy is one of the most common neurological disorders. It affects one in 97 people in Scotland. Many myths about people with epilepsy persist, although, in fact, everyone’s condition is different. That fact can sometimes make diagnosis very difficult. Although adjustments may be well intentioned, not all adjustments that employers make in the workplace will be suitable for everyone. One size does not fit all. There are many different types of seizure with different symptoms—they vary in respect of severity and recovery. Some required adjustments may be minor, but they tend to be specific to an individual. That is why they should always be discussed between the employer and the employee.

Unfortunately, experiences of stereotyping and stigma tend to lead to lower self-esteem, and people with epilepsy may prefer to hide their condition altogether due to a fear of being misunderstood and, indeed, being discriminated against in the workplace. That shows that educating the wider public about epilepsy remains as much of a pressing issue today as it was eight years ago. Therefore, I commend Epilepsy Scotland’s campaign around the purple day of action, which is on Saturday 26 March this year. That day helps the conversation about epilepsy. This year, there will be a specific focus on increasing awareness in the workplace and providing employers with more information to create a more nuanced understanding of a very complex condition.

That principle must also be at the centre of the Scottish Government’s strategic framework—“A Fairer Scotland for Disabled People: Employment Action Plan”—to drive better insight into the relationship between epilepsy, work and employment, and to reduce the disability employment gap for people with the condition. I agree with the suggestion in Dr Allan’s motion that the Scottish Government should now review whether its strategic framework is doing enough to meet the needs of people with epilepsy to increase the employment rate of people with the condition. That will be especially important in the post-Covid economy, following a pandemic during which, sadly, people with any kind of disability were more at risk of redundancy and underemployment, as they were more likely than those in the general population to work in sectors that had to close and were impacted most severely.

Epilepsy Scotland’s latest figures clearly demonstrate that more work must be done to reduce the disability employment gap generally and for people with epilepsy specifically.

I thank my colleague and friend Dr Alasdair Allan for lodging the motion and raising an important issue, for his excellent speech and, of course, for bringing lived experience to many of the issues that we are discussing.

As Dr Allan said, I recently attended a cross-party group meeting that was hosted with Epilepsy Scotland present and chaired by him. At that meeting, I heard at first hand about the new research by Professor Patricia Findlay of the University of Strathclyde, “Epilepsy and Employment in Scotland”, which highlights the difficulties that people with epilepsy face in finding and retaining secure employment. That theme was pursued by many members in their excellent contributions to the debate. The research indicates that 81.3 per cent of the non-disabled population in Scotland are in employment but that, for people with epilepsy, the figure is only 36.9 per cent. That statistic is reflected in Alasdair Allan’s motion.

The Scottish Government is committed to supporting everyone who can and wants to work into fair, sustainable employment. That includes people who live with epilepsy. Through our fair work approach, we are committed to addressing inequalities in the labour market and supporting the development of diverse and inclusive workplaces.

In “A Fairer Scotland for Disabled People: Employment Action Plan”, which was published back in 2018, the Scottish Government outlined the initial steps that it would take to meet its commitment of reducing the disability employment gap by at least half by 2038. The action plan is pan-disability and focuses on the need to take action to address the structural barriers that prevent all disabled people from accessing fair and sustainable work, such as the quality of the careers advice and information that is provided, accessibility regarding communications, employers’ attitudes—which many members mentioned—and recruitment policies and practices.

However, as I am sure that most members will be aware, the disability employment gap remains one of the most persistent labour market inequalities, not only in Scotland but across these islands. The disability employment gap had steadily decreased from the 2016 baseline of 37.4 percentage points to 32.6 percentage points in 2019. However, the latest figures indicate that, in 2020, that progress had reversed slightly, with the disability employment gap widening to 33.4 percentage points. That is lower than the level back in 2016 but higher than the level in 2019.

That sounds like a commendable idea, and I am sure that members will want to consider that.

As Kenny Gibson highlighted, the wider disability employment gap in 2020 was due to a greater decrease in the employment rate of disabled people compared with non-disabled people during the course of the pandemic. Kenny Gibson highlighted the impact that the pandemic has had on many people in our society.

We know that the on-going pandemic is having a considerable impact on employment opportunities for disabled people, and we have continued to work on that issue throughout the pandemic. We are investing £4.5 million over five years to implement our national framework for action on neurological care and support to ensure that everyone with a neurological condition such as epilepsy can access the care and support that they need. The aims include improving the provision of co-ordinated health and social care and support, developing sustainable workforce models and ensuring that high standards of person-centred care are provided for people with neurological conditions.

Since October 2020, we have invested nearly £200,000 in projects that will improve the health and wellbeing of people with epilepsy in Scotland. Those projects include the establishment of an epilepsy register in NHS Greater Glasgow and Clyde, NHS Lanarkshire and NHS Tayside and its expansion nationally to drive up standards of care, and a programme, which has been developed by Quarriers, to improve the capacity of people with complex epilepsy to self-manage their condition and increase their resilience and confidence.

Epilepsy is fully within the scope of the actions that we are taking to support disabled people into and in work. We have undertaken a review of supported employment to identify gaps in the current provision so that steps can be taken to offer a service that effectively meets the needs of clients, and we will publish our findings on that this summer. In addition, over the past two financial years, we have invested £650,000 in a public social partnership that is working to improve recruitment and retention rates for disabled people by developing and testing different types of support for employers to put in place inclusive employment practices.

In January this year, we also launched the new workplace equality fund, which makes up to £800,000 available for projects that seek to change and improve employer practices and address long-standing barriers in the labour market, including those that affect disabled people and people who are living with epilepsy.

No one left behind is our strategy for placing people at the centre of the design and delivery of employment services. It promotes a strengthened partnership approach in which the Government works with third sector training providers to identify local needs and make informed, evidence-based decisions, flexing these to meet emerging labour market demands.

Overall in 2022-23, we will invest over £35 million in the no one left behind approach. That demonstrates our commitment to providing person-centred and place-based employability support to those who are or at risk of long-term unemployment, including people with disabilities.

In terms of next steps, tackling the disability employment gap is clearly an integral part of our vision that Scotland will be a leading fair work nation by 2025, where fair work drives success, wellbeing and prosperity for individuals, businesses, organisations and society.

Working in co-production with disabled people’s organisations, we are reviewing our action plan for disabled people to ensure that we take the right actions and have the right information to continue to make progress. This year, we will refresh the action plan, alongside and in alignment with a refresh of the fair work action plan as well as a new gender pay gap action plan and ethnicity pay gap strategy. Reducing the disability employment gap is a significant commitment. We will draw on all available research, on expertise and on the voices of lived experience from across Scotland to inform our approach. I do not have ready answers to many of the points that have been made during the debate, but I think that it is important to take those points away and feed them into the refresh process and to ensure that we reflect on how we can help address them in the workplace.

The Scottish Government is committed to ensuring that all people who are living with epilepsy in Scotland are able to access the best possible employability support that puts the individual at the centre. Through our fair work approach, we are very much committed to addressing inequalities in the labour market and supporting the development of diverse and inclusive workplaces. We will continue to take action to eradicate structural barriers that are faced by disabled people, including those who are living with epilepsy.