Employees with epilepsy: good-practice guidance

To assist occupational health practitioners, experts have produced a guidance booklet that covers the effects of epilepsy and best practice on helping employees to cope with the condition in the workplace.

Pick any employer at random and it is likely that they will interview or employ a person with epilepsy at some point, or have already done so. Epilepsy affects 50 million people worldwide, making it the most common serious neuro­logical condition. In the UK, one person in 100 will develop epilepsy. This means that around 1% of the labour market, or an estimated 318,000 economically active people of working age, suffer from it.

Despite its prevalence, epilepsy remains a socially stigmatised condition. Those affected commonly face complex and interacting problems in finding and maintaining employment. The UK’s first good-practice guide to epilepsy and occupational health, published by Epilepsy Scotland, seeks to address this situation.

In February, clinicians and occupational health professionals gathered in Westminster, London, to launch the guide nationwide. Full of relevant and practical information, it explains what employers need to know about epilepsy and the workplace, how best to support staff and how to maximise the benefits of working with occupational health services. It will be a valuable tool for occupational health professionals and employers to assist people who have epilepsy.

Reasons for producing the guide

Everybody’s condition is unique; it is therefore important not to make assumptions about an individual’s epilepsy. There are more than 40 types of seizure; some seizures end in seconds while others may last minutes. Some people may experience seizures only when they are awake and fully aware. Others may lose consciousness, or have seizures only when they are asleep. Up to 70% of people with epilepsy have no seizures while taking anti-epilepsy medication.

quotemarksEverybody’s condition is unique; it is therefore important not to make assumptions about an individual’s epilepsy.”

When dealing with epilepsy and the workplace, Hilary Todd, chief executive of the Society of Occupational Medicine (SOM), points out: “No two people are the same, so asking pertinent questions about the person’s seizure type and any trigger they may have can be really useful. Occupational health doctors, with the help of this booklet, can ensure some of these vital conversations take place.”

The majority of people with epilepsy have as many skills and competencies as those who do not, and so their condition should not be a barrier to most forms of employment. In spite of this, they are, on average, twice as likely to be unemployed, and are more likely to have unskilled jobs. Epilepsy Scotland’s key motivation for developing good practice guidance was the evidence that it gathered from people experiencing such difficulties.

Lesslie Young, CEO of Epilepsy Scotland, says: “Over a number of years it became increasingly obvious, through the thousands of calls to our national helpline from both employers and employees, that there was a clear need for more, and better, information about epilepsy in the workplace. For anyone who has epilepsy and is either in employment or seeking to gain employment, the challenges in their daily life, combined with those encountered or anticipated at work, may seem, to them, insurmountable.”

Generally, work capacity among employees is not the key issue, but it seems that employer attitudes are critical in determining the employment status of people with epilepsy. Any nervousness around this health condition usually reflects a lack of knowledge. Experimental research reveals that epilepsy-related stigma remains, despite reasons commonly given by employers for their reluctance to employ a person with the condition, such as concerns about health and safety.

Changes to employment law, heralded by the Equality Act 2010, mean that it is more critical than ever that employers are better informed about epilepsy and are able to grasp the importance of a non-discriminatory approach.

How can this guide help OH professionals?

Specialist occupational health support can be limited for people employed by small and medium-sized enterprises. The guide is of particular benefit to these employers.

Using this publication, occupational health physicians and nurses can help organisations understand how to identify, assess and manage workplace risks concerning epilepsy. The guide offers accessible information on equality legislation, epilepsy and reasonable adjustments and how to handle epilepsy disclosure in the workplace. It explains why customised risk assessments for employees with epilepsy are so important, what is involved and what to do with the outcomes. It also addresses specific concerns such as work hazards.

The role of occupational health is explained clearly, including ways to refer an employee for occupational health assessment. There is guidance on communicating with occupational health professionals to get the best outcome, as well as dealing with employee concerns about the occupational health process.

Speaking at the launch of the guide in London, occupational health provider Serco’s medical director Dr Freddie Westbrook highlighted the contribution that the booklet has to offer on how occupational health professionals and employers communicate with each other.

“This guide is a useful addition to how [OH professionals] are going to help people who have epilepsy,” he said.

quotemarksThe guide offers accessible information on equality legislation, epilepsy and reasonable adjustments and how to handle epilepsy disclosure in the workplace.”

“As physicians, we sometimes forget that when we use diagnostic labels like epilepsy, one of the consequences is that it actually codes a lot of information. When we are talking to people like employers and other clinicians about epilepsy, [how] it is interpreted and decoded by that individual can come with associated preconceptions, and indeed misconceptions, and sometimes a degree of prejudice.

“It is something we have to appreciate, for this coding and re-coding of terminology is an important factor because that actually influences people’s impressions of important things like associated risk and an individual’s capability.”

The guide also suggests good-practice measures to enable employers and employees to maintain a positive relationship. Aspects covered include communication, sick leave, epilepsy awareness, first aid in the workplace, and epilepsy and emotional wellbeing. There is also a special chapter on epilepsy and ill-health retirement.

Who supports the guide?

The guide was written by Epilepsy Scotland in partnership with consultant occupational health physicians from Serco, BCerta and Strathclyde Police, as well as HR professionals and a consultant chartered psychologist.

It has the support of the SOM, the Scottish Government and the Occupational Health Nurse Advisors to the Police Service, as well as pharmaceutical companies Eisai Ltd and UCB Pharma.

When the booklet was launched earlier this year at the Scottish Parliament by Deputy First Minister Nicola Sturgeon, she gave “a very warm welcome to this extremely practical document”.

“We all know that epilepsy is no longer a valid reason for being excluded from, or discriminated against in, the job market. This novel guide moves even beyond that position, into a new era where the focus is on providing the best possible support for someone with epilepsy in the working environment,” she said.

As a guest speaker at both the Scottish Parliament and House of Commons launch, detective chief inspector Ross Bennet (see case study 2) highlighted the huge impact that occupational health made on his life: “Please remember that epilepsy is merely a part of who a person is and not what they are. Occupational health is, for me, the ethical balance to ensure that everyone is treated fairly. I think of it as how I would like my family to be treated.”

Looking ahead

Around 80 new diagnosed cases of epilepsy occur every day in the UK, and the number of older people developing the condition is set to increase by 50% over the next 20 years. As the retirement age rises, so too will the proportion of people with epilepsy in the workplace.

OH professionals have a vital role in educating employers to develop epilepsy best practice, so please do encourage them to use this excellent guide.

Call the freephone helpline on 0808 800 2200 to obtain a free copy of the guide, or download it from the Epilepsy Scotland website.

Case study 1

Today’s workplace is expected to show that it can adapt its practices and support staff who have or develop a health condition. In the Scottish Parliament, some employees have epilepsy, including Mary Nicol, head of HR strategy and policy. She was diagnosed with epilepsy just weeks before starting her present post. After informing the Scottish Parliament, it introduced various measures to help her.

Nicol says: “It was a real shock when I was first diagnosed. Still, I was determined to be as open about epilepsy as possible. I am fortunate the Parliament has gone out of its way to help and has listened to suggestions about things I can do, and what they can do to support me.

“What I really appreciate is that the people I work with are not always looking for things that are wrong with me. They treat me the same as everyone else but still know exactly what to do if I have a seizure. That gives me a lot of comfort.”

In her role as head of HR strategy and policy, Nicol is keen to ensure that the Scottish Parliament follows best practice for occupational health.

She explains: “We have a clear policy of non-discrimination on grounds of disability and a commitment to equality of opportunity. We would make and have made reasonable adjustments for an employee with epilepsy at work, such as adjusting lighting and room temperature. We also adjust absence trigger levels to take account of the pattern of seizures an individual experiences to try to ensure that he or she is not disadvantaged because they have epilepsy. We offer homeworking and flexible start/finish times and other flexible working arrangements, such as reduction in hours.

“We ensure discretion and privacy following a seizure. There’s an on-site doctor and nurse. We provide extra support – for example, being accompanied to a meeting if the member of staff is concerned that he or she may have a seizure. We train colleagues about epilepsy. If someone has a seizure, we provide a taxi and accompany them home. We will contact the person’s family and ensure that the person is provided with appropriate care.”

In 2009, the Scottish Parliament won Epilepsy Scotland’s Employer of the Year award. Nicol and her team also advised on the charity’s Epilepsy and occupational health guide, which showcases best practice for employers.

Nicol outlines some examples: “We arrange for a personal emergency evacuation plan and have a lone working policy which provides for a regular check if the individual has to work on their own for any reason. We also have a return-to-work policy with additional paid special leave to ease any financial burden that might otherwise accrue if someone needs to return to work on a phased-return basis.

“Notwithstanding the epilepsy awareness training that is provided, actually working with an individual who is open about their epilepsy is the best way of raising awareness and genuine understanding, and we believe we have created an office environment that supports this. Staff know that the organisation actually implements its stated policy. All these measures help people to feel safe, supported and valued.”

Case study 2

Detective chief inspector Ross Bennet is passionate about the important role played by occupational health and about this free guide for employers.

Here, he shares how his employer handles epilepsy in the workplace.

“I was a constable with this force when I developed epilepsy in 1997. Since then, I have been supported in every possible way. I have been promoted in rank several times and I am now a chief inspector. I have had financial assistance to study for two separate degrees: one Master’s and one postgraduate diploma. I was given the opportunity to work from home on several occasions when I was undergoing changes to my medication. A driver took me to meetings when my driving licence was temporarily withdrawn. I have also been moved to other tasking and rewarding duties when seizures interfered with my regular work.

“Fife Constabulary has recruited staff with nocturnal epilepsy, and this condition was not seen as an issue. Some members of staff employed by this organisation have epilepsy. Two employees who were medically disqualified from driving for a year were transferred to other duties which catered for their short-term needs and long-term ambitions. Our welfare and occupational health services continue to offer tailored support to assist staff when they need it.

“Recruitment procedures have been amended so that any condition an applicant has is not made known to those involved during the selection process. All officers attend a training seminar that raises awareness of epilepsy in the workplace.

“The force treats staff with epilepsy as individuals and is not over-protective. People are encouraged to reach their potential and personal goals.

“The importance of occupational health cannot be over-emphasised. The benefits for everyone are beyond words. Without this, not only could I not be standing here as a detective chief inspector, but I may not even be in employment.”

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