Written evidence from the Epilepsy Action (DEG0110)

I am responding to the Work and Pensions Committee inquiry into the disability employment gap on behalf of Epilepsy Action, a national charity representing the 600,000 people with epilepsy in the UK.

The levels of employment among people with epilepsy is a particular concern for us, and we are very grateful that the committee have launched this inquiry.

The disability employment gap has consistently remained at around 30-25% since 2010. However, people with epilepsy can struggle to find employment more than many other disabled people.

People with epilepsy have one of the lowest rates of employment among disabled people. Just 34% of working age people with epilepsy are in employment according to figures from the ONS Labour Force Survey. This is among the lowest rates of employment in comparison with other disabled groups. People with epilepsy need more help and support to get, and stay in, employment.

From the initial application and job interview process to the day-to-day experience of working, many people with epilepsy encounter clear barriers and discrimination. This treatment can lead to fear of dismissal and even cause some people to hide their condition.

Epilepsy is a fluctuating and invisible condition, which affects individuals differently. Some people are unable to work at all. But those who are in work often report misunderstandings about their health, leading to a lack of progression, demotion and even redundancy.

Research conducted by the Institute of Employment Studies, on behalf of Epilepsy Action, identified a number of reasons why people with epilepsy struggle to find and stay in work:

• Employers are reluctant to hire people with epilepsy, due to not knowing how to help or assist a co-worker having a seizure. Employers also raised concerns that hiring someone with epilepsy could increase employer liability insurance costs, disrupt work flow or undermine company efficiency

• Employers were often unfamiliar with the range of epilepsy symptoms that exist. Sometimes they were unaware that medication can often prevent seizures. Employers’ main concern about employing someone with epilepsy was the safety risk of seizures. They frequently doubted that they could make adjustments to enable someone with epilepsy to work safely

• People with epilepsy were usually very reluctant to talk about their health with their employer until they were established in a job, and they found discussing this very difficult. Often they found it hard to explain their fluctuating condition clearly to others. Sometimes they feared discrimination if employers knew about their epilepsy

• People with epilepsy also reported being unable to seek work that suited their talents, because of safety concerns. Poor mental health was also a common experience that blocked people from finding good jobs

Research by the Trade Union Congress (TUC) has also highlighted that people with epilepsy in work are paid on average 11.8% less than non-disabled workers. This means that not only are people with epilepsy less likely to have a paid job, but when they do, they earn less than their non-disabled peers. Combined with historically low levels of success in applications for Personal Independence Payments for people with epilepsy, this means that many people with epilepsy struggle financially despite their condition meaning that they often require extra financial support.

While we have seen the success rates for PIP applications increase significantly in the last two years, this has not been mirrored in the employment market, and we also remain concerned about the level of support that PIP and indeed Universal Credit provide. We have supported other charities in calling for disability benefits and Universal Credit to be uplifted to ensure that they meet the needs of people with epilepsy and other disabled groups.

In order to address these issues, Epilepsy Action believes that significant changes are needed to the current employment support made available to disabled people, and that this needs to be further targeted to provide specific support to groups with the lowest levels of employment. This should include improvements to the Access to Work and Disability Confident schemes.

In particular, as part of an improved Disability Confident scheme, employers should have to demonstrate that they have implemented changes to better recruit and retain people with epilepsy by:

• Undertaking epilepsy-specific training to better understand the condition
• Offering better employment support for people with epilepsy including a personalised toolkit for employees and employers to promote positive disclosure and active self-management

In addition the Government should also amend workplace legislation to extend the full range of statutory employment rights to all workers, regardless of employment status or type of contract.

We would also suggest that employers should be required to report on their disability pay gap, similarly to the gender pay gap.

The number of specialist disability employment advisers (DEAs) should be increased, and encouraged to work with local employers to improve their understanding of disabilities and promote the benefits of a diverse workforce.

December 2020