Hidden disabilities, hidden talents
We know that people with disabilities still struggle to find, and stay in work. Despite the Government committing to improving the number of disabled people in work, the disability employment gap - the difference between the employment rates of disabled and non-disabled people - has consistently remained at around 30% since 2010. This means that disabled people are more than twice as likely as non-disabled people to be out of work.
We know that some people with epilepsy will not be able to work due to the severity of their condition. However, for many others there are few jobs that their epilepsy would prevent them from doing.
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 over a third (34%) of people who identified epilepsy as their "main" health condition are in employment, according to figures from the Office for National Statistics.
These figures show that the only people that have a lower employment rate are those people who have "mental illness or other nervous disorders" (29%) and "severe or specific learning difficulties" (18%).
By comparison, the overall rate of employment in the UK is around 76%. This means that just over three quarters of working age people have a job.This situation is unacceptable. Epilepsy Action is campaigning for more support to help people with epilepsy to find, and stay in, work. We are calling on both the government and employers to take positive, immediate action to ensure people with epilepsy are not unfairly disadvantaged in the job market. We also want employers to consider attitudes towards epilepsy and not view it at as an immediate barrier to employment. By taking time to learn more about epilepsy, employers can provide a more level playing field when it comes to applying for jobs and working. This will make a significant improvement to the current stark statistics.
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.
The low rate of employment for people with epilepsy is very concerning, given that there are very few jobs someone with epilepsy cannot do. Depending on how the condition affects their daily life, many people with epilepsy can carry out a job with minimal adjustments. Despite this, there are many who are unable to find a career.
We have spoken to many people with epilepsy who have had differing levels of success in finding, and staying in work.
A lack of understanding
Luke was initially diagnosed with epilepsy at the age of 21, and experiences focal seizures. At the time of his diagnosis, Luke was working for a company based in South Bank, London. However, rather than receiving support from his employers, Luke felt like a burden on the business and received a disciplinary hearing and record:Back to top
"[They] were wholly unsupportive when I missed a week of work due to not daring to go in (what if I have another seizure in front of thousands of people on South Bank?!). Had they understood the condition more I feel as though this action [being given a disciplinary hearing and record] wouldn't have been taken. I'd actually had many of what we now know to be simple focal seizures (or even possibly unnoticed complex) while on shift and carried on regardless. They didn't appreciate this at all and felt I should have [carried on] anyway."
Luke's experience reflects the findings of research the Institute for Employment Studies (IES) carried out on behalf of Epilepsy Action in 2019. The IES found that one of the biggest barriers to employment was a lack of understanding of epilepsy. Many employers were unaware of the different ways that epilepsy can affect different people. They assumed everyone with epilepsy has tonic-clonic seizures, and were unaware that many people's seizures can be controlled with medication. They also thought that the majority of people with epilepsy would be 'photosensitive'. This is despite the fact that only around 3 in every 100 people with epilepsy have photosensitive epilepsy.
Anita is 29 and had her first seizure in October of 2015 (aged 24). A lack of understanding from previous employers, who were reluctant to adapt their health and safety policies, meant Anita lost her job. The stress this created worsened her condition. She describes the challenge of dealing with epilepsy at work:Back to top
"As well as those in authority, my colleagues also changed how they treated me. So I didn't know how to portray my epilepsy. Often I wanted to play it down, to avoid being seen as too much of a risk. But then when the condition became serious and I needed the time off work, it back-fired. People felt like I'd hidden it from them."
Looking for work
Following losing his job in London, Luke started looking for a new job. However, he experienced a nightmare scenario for many people with epilepsy - he had a seizure during an interview for a role at a telecoms company:
"I had to apply for the job twice. I was still out of it from a cluster of seizures when I went in to the first interview and, lo and behold, I had a focal seizure in the interview itself. I don't remember much of the interview, but I was rejected for the job."
Anita has since left her job, and started training as a solicitor. She hopes to go into employment law, and challenge the discrimination people with epilepsy face.
Again, Luke's experience reflects a number of key concerns employers identified in the IES research. This included how colleagues would react to seeing a seizure, the costs and disruption that might ensue from hiring someone with epilepsy. There is also a reluctance to making adjustments to allow a person with epilepsy to fit into their workplace and activities.
As part of the IES research many employers said that witnessing a seizure would be distressing and that employees would not know what to do, unless they had received prior training. This is consistent with the findings of a 2016 poll, where, a quarter of respondents stated that they would be concerned about working with someone with epilepsy. 63% of those people said it was because they had no idea about what to do to help a colleague during a seizure (YouGov, 2016).
However, by persevering, Luke was able to arrange another interview.
"I sent an email asking for feedback. I heard nothing. So I sent one again, this time quoting a few laws about employment discrimination. Within an hour, I got a phone call telling me I should please apply again because they'd love me to interview once more. I applied, got an interview (this time I was fit and well!) and I got the job."
Many other people with epilepsy are often not able to challenge an employer, or potential employer, in this way. For example, the people with epilepsy who took part in the IES research were unclear about what constitutes discrimination against people with disabilities in employment. This meant that they were reluctant to challenge behaviours and practices that they felt to be discriminatory, because they were unsure if this was supported by legislation.
Anita also spoke about the difficulty of spotting discrimination against someone with a hidden disability, such as epilepsy.
"I have had terrible experiences with employers and had to sign non-disclosure agreements. I've since realised there are more situations like mine under the radar. So many cases are being settled privately and, due to the invisibility of epilepsy, the discrimination can be harder to spot."
Support at work
Following his interview, Luke started work but it was still far from plain sailing.
Despite being aware of his epilepsy, his manager and colleagues didn't fully understand the full extent of his condition. Luke reflects:
"My team manager was new and incredibly keen on good statistics and customer surveys. But as part of this, he took disciplinary action against me because I had higher than usual absences. Apparently, it is company procedure, but upon speaking to his manager, it seems my health information was never actually submitted. It seems he was concerned having someone with epilepsy on his team would count against him.
"One day, I had a focal seizure and drooled over my keyboard, breaking it in the process. Only then did the other managers actually realise I have epilepsy. My employers have since been very supportive of me, my appointments and of my upcoming surgery."
Luke's employers have created a document to help staff whose circumstances could have an impact on their ability to work. This is includes health, disability or caring responsibilities. Developed with trade unions, this voluntary document encourages employees and their line manager to record any information and agreed actions. The emphasis is firmly on what Luke can do rather than what he can't, helping to remove any barriers that might prevent him from making a full contribution at work. Luke has been able to list exactly how his epilepsy affects him, his seizure types, how to treat him and who to call in the event of a seizure at work. He also lists his medications, first aid and any adjustments that could help support him.
"It makes a lot of difference knowing people know how to help me. Now my epilepsy is out in the open, I feel I can relax a lot more. But epilepsy is clearly a condition that scares employers."
Such small, but meaningful adjustments and understanding from colleagues and managers can make a huge difference to people with epilepsy.
Thankfully, we have heard of many examples where an employer has properly supported an employee with epilepsy, and the positive impact this can have. Employers prepared to put measures in place to support people with epilepsy make a huge difference.
Ben, who works at Blackburn with Darwen Council, has received fantastic support from his managers, which has enabled him and other colleagues with epilepsy to thrive:Back to top
"When I was diagnosed, my head of service and senior management made every effort to make reasonable adjustments to help me manage my condition. They did the same with Holly [a colleague who also has epilepsy]. The aftercare for me when I had my last tonic clonic seizure in 2016 was brilliant, including a message of support from the chief executive. As my role involved a lot of travelling, they put a lot of measures in place so that I could continue working in that role."
Ben has also worked with his employers to bring about changes at Blackburn with Darwen Council:
"I'm proud to have worked with my employer to bring in new guidance for managers on epilepsy in the workplace. I feel passionate about using my story to help others. People can still live fulfilling lives with the condition."
Increased knowledge about epilepsy can make a huge difference to people with the condition, and their ability to find and stay in work. By taking simple steps to help support people with epilepsy, employers can help to create a more inclusive workplace.
Recently, Anita proud to have got a new job with an employer who is understanding and flexible, offering staff specific epilepsy training:
"It's easy to think 'no employer is going to want me'. But staying strong and being bold enough to push for the rights you know you deserve, and which the law protects you with…is important to me."
What we want
In order to get more people with epilepsy into work, Epilepsy Action is calling on employers to implement changes to better recruit and retain people with epilepsy by:
- Use Epilepsy Action’s employer toolkit designed to help support employees with epilepsy in the workplace
- 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
The government also has an important role to play. We are calling on them to introduce targeted employment support for people with epilepsy including:
- Introduce mandatory disability employment and pay gap reporting for employers
- This should also include reporting on the employment gap for specific impairment groups
- Measures should also be introduced to measure the job retention of people with disabilities, as staying in work can be as important as finding employment
- Introduce a duty on employers to produce targeted action plans identifying the steps they will take to address any gaps identified, including ensuring disabled workers with invisible impairments feel confident in completing workplace equality monitoring
- More focused employment support for people with hidden and fluctuating conditions and better support for people with epilepsy from Jobcentre Plus Disability Employment Advisers
- This should include ensuring that job coaches with training and understanding of epilepsy, and the employment barriers they face, are available to people with the condition
- Reform the current Access to Work system to ensure that people with epilepsy get the support they need to find and stay in a job
- Access to Work support should also be made available during the job search to help people find work, and ensure that support is in place for the start of employment
- Introduce timescales both for Access to Work to provide recommendations and employers to introduce the requested adjustments
- Reform the Disability Confident scheme to ensure that it is working for both employees and employers
- This should include reforms to the current commitments that employers have to undertake at all levels of the Disability Confident scheme to include more measured outcomes for disabled people
- Introduce requirements to report the experiences of disabled people who work at the company and those who have unsuccessfully applied for a role
- Encourage companies to undertake exit interviews with disabled employees to understand why they are leaving a role
- Ensure that all available employment schemes are better communicated to employers and employees so they are aware of the support available
- Introduce a right to request work(place) modifications for employees not covered under the duty to make reasonable adjustments established in the Equality Act 2010
- Strengthen statutory guidance for employers to encourage early intervention to support a sick employee to return to work
- Reform statutory sick pay to allow for greater flexibility in returning to work following sickness absence
- Consider organisations' employment practices regarding disability equality when making funding and procurement decisions
- Extend the full range of statutory employment rights to all workers, regardless of employment status or type of contract
Help for employers and people with epilepsy
The Epilepsy Action Employer toolkit helps employers provide effective support to their employees with epilepsy. This online resource provides information, videos and templates to equip employers with the tools to confidently support their employees.
The Epilepsy Action Helpline offers information, advice and support on a range of issues, including employment. As well as offering advice for employees, our trained advisers can advise employers wanting to learn about epilepsy. Call the Epilepsy Action Helpline on 0808 800 5050, or email firstname.lastname@example.org
We have advice and information about work and epilepsy. This includes when to tell your employer and colleagues about your epilepsy, advice about care plans risk assessments and reasonable adjustments. As well as advice on what to do if you have been treated unfairly at work. You can find the information here: epilepsy.org.uk/info/employment.
Epilepsy Action offers in person epilepsy awareness training delivered at your place of work, which can help improve awareness and understanding of the condition.
The training covers what epilepsy is and uses video clips demonstrate the different types of seizures and appropriate first aid to support the individual. It provides an opportunity to discuss some of the issues around living with epilepsy and reasonable adjustments that might need to be made at work. Delivered by our accredited volunteers it provides information you can trust. Certificates of attendance can be provided, and you will be left with an information pack full of lots of useful resources.
Clare, from HCR Relocation Management group told us:
"I would definitely recommend other companies to do this training, whether they have a member of staff with epilepsy or not. Our employee had never experienced epilepsy before and at 28 was in the workplace when her first seizure happened. She had frequent seizures after that. This has certainly helped everyone have a greater understanding. The training has also helped me outside of the workplace because you never know when you may need to use it."
Book your place today epilepsy.org.uk/awarenesstrainingBack to top
*People who identified epilepsy as their "main" health condition in reply to ONS survey.