Epilepsy and transitions into employment

Graduates with epilepsy need support as they move into work as there is a high degree of misunderstanding about the condition among employers, writes Sally Wilson, senior research fellow at the Institute for Employment Studies (IES)

Transitioning from a study environment to the world of work brings its own well-documented challenges but these can be intensified when dealing with the effects of a chronic health condition.

Some concerning issues were highlighted in IES's recent report for the charity Epilepsy Action, which reviewed the workplace support needs for people with epilepsy. This group is bigger than most people think: around 1 in 100 people have an epilepsy diagnosis, a total of 600,000 individuals in the UK.1 The study's focus was on the working population as a whole but some important messages emerged for higher education careers advisors, graduate recruiters and relevant specialist agencies.

The research's overarching aims were to explore the factors that contribute to people with epilepsy being disadvantaged at work and to identify what good employment support should look like. The IES team conducted a thorough literature review and interviewed disability experts and practitioners. To gain on-the-ground insights we also interviewed six employers of different sizes across a range of industries, and conducted focus groups with people with varied epilepsy symptoms and employment histories.

The work highlighted some key areas where potentially unlawful discrimination can occur. The first-hand accounts of people with epilepsy were vital to understanding this. Most felt that they had been discriminated in ways that had limited their employment chances. As a result of their experiences many had chosen not to discuss their health with their employer until they were established in their job, or in some cases not to disclose their condition at all. This could lead to anxiety about what would happen if they had a seizure among people who were unprepared.

Our research interviews with employers confirmed a high degree of misunderstanding about epilepsy. For example, many falsely assumed that tonic-clonic seizures (which can involve dropping to the floor and losing consciousness) were typical. They also underestimated the extent to which medication can control or limit symptoms: about half of people with epilepsy are seizure-free.

Stemming from their lack of knowledge, employers were unsure whether they could make adjustments to enable someone with epilepsy to work safely in job roles involving machinery, vehicles, working remotely or alone. This made them over cautious in estimating the range of jobs to which people with epilepsy could be deployed. However, despite (or perhaps because of) their unease they were emphatic that they would wish a person with epilepsy to disclose their condition. This obviously sits in contrast to employees' fears about being open.

People with epilepsy leaving higher education are in a potentially vulnerable position, as they leave behind an informed system-wide approach to illness and disability. IES research has evidenced the extent and breadth of support in HEIs that is offered to students with 'invisible' long-term conditions like epilepsy.2 Students typically benefit from specialist staff with a good understanding of the effects of living with fluctuating symptoms and with knowledge of adjustments that can help overcome potential barriers to participating in study activities and academic success. The workplace represents a comparative unknown in this respect.

IES has recommended a number of strategies that could help ensure that a disclosure of epilepsy is met by a well-informed and supportive response at work. For example, a 'whole organisation' approach as promoted by the Disability Confident scheme is one way to help achieve this.3 Improved awareness and uptake of Access to Work is also specified. However, it takes time to change attitudes and practices and a more immediate way to help graduates with epilepsy is to ensure they are empowered to make informed decisions about disclosure. Stakeholding bodies such as AGCAS and the Equality Challenge Unit (now part of AdvanceHE) could have a role in ensuring graduates with epilepsy receive appropriate guidance in their transition to work and are aware of their rights.4

There is also scope for providing direct support to graduates in the disclosure process. Our report recommends that people with epilepsy need access to advocacy as affected individuals are not always well-placed to explain their symptoms themselves, especially if they have had negative responses to their condition in the past. We suggest that Epilepsy Action might wish to offer this, but for graduates there is potential for specialist stakeholders to get involved who understand the pressures of study to work transitions.

IES's research participants felt it was time for a national campaign to challenge attitudes towards epilepsy and employment. This could include promotion of case studies featuring people with epilepsy in unexpected jobs, celebrities with epilepsy, and employers demonstrating good practice.

It's essential that the life chances of graduates with epilepsy are not limited by the employer misperceptions and that they feel confident to enter the profession of their choice. We look forward to seeing how Epilepsy Action and, potentially, other specialist agencies apply our findings.

The views and opinions expressed in this article are those of the author(s) and do not necessarily reflect the position of HECSU/Prospects

Notes

1. Epilepsy facts and terminology, Epilepsy Action.
2. Models of support for students with disabilities, IES, 2017.
3. Disability Confident, GOV.UK.
4. Equality Challenge Unit, AdvanceHE.

Written by

Sally Wilson

Senior research fellow

IES