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International Epilepsy Day

Reducing the stigma associated with epilepsy.


Woman having an epilepsy


ABOUT INTERNATIONAL EPILEPSY DAY



International Epilepsy Day is an annual awareness-raising initiative organised by the International Bureau for Epilepsy (IBE) and the International League Against Epilepsy (ILAE) taking place on Monday 12th February this year. Its main aim is to educate the general public on the facts about epilepsy, dispel myths and misconceptions, and drive the implementation of the World Health Organisation’s 10-year Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (2022-2031). The strategic objective of IGAP is to strengthen the public health approach to epilepsy and close the major treatment and inclusion gaps for people with epilepsy worldwide.



WHAT IS epilepsy?



Man trying to help woman who has an epilepsy and has a seizure

Epilepsy is a condition that affects the brain and causes frequent seizures. A seizure happens when there is a sudden burst of intense electrical activity in the brain. This causes a temporary disruption to the way the brain normally works. Epilepsy can affect anyone, irrespective of their age, gender or background, however it is more common in childhood and in later life.


Types of seizure


There are many different types of seizure and what happens to someone during a seizure depends on which part of their brain is affected, and how far the seizure activity spreads. The International League Against Epilepsy classifies seizures into:


  • Focal seizures - during a focal aware seizure, people stay fully aware of what’s happening around them, even if they can’t move or respond.

  • Tonic-clonic seizures - at the start of the seizure the person becomes unconscious, their body goes stiff and if they are standing up they usually fall backwards. They may also cry out and they may bite their tongue or cheek. During the seizure they jerk and shake as their muscles relax and tighten rhythmically, their breathing might be affected, their skin may change colour and become very pale or bluish, and the person may lose control of their bladder and/or bowels.

  • Absence seizures - during these seizures people will suddenly stop what they are doing for a few seconds, but will not fall. They might appear to be daydreaming or ‘switching off’. People around them might not notice their absence seizure. The two most common types of absence seizure are typical and atypical.

  • Myoclonic seizures - these are sudden, short-lasting jerks that can affect some or all of the body. The jerking can be very mild, like a twitch, or it can be very forceful. These types of seizures are usually too short to affect consciousness.

  • Tonic seizures - if a tonic seizure starts in both sides of the brain, all the muscles tighten and the body goes stiff. If someone is standing, they may fall to the floor. Their neck will extend, their eyes open wide and roll upwards. The arms may raise upwards and the legs stretch or contract. A person may cry out and stop breathing during the seizure. If a tonic seizure starts in one side of the brain, the muscles tighten in just one area of the body.

  • Atonic seizures - during these seizures usually all of muscles go limp and a person drops to the floor. This can result in injuries to their head or face. Sometimes they might not completely fall, but their head may drop forward or they might sag at the knees. Atonic seizures are very short, usually lasting less than two seconds.



Around 630,000 people in the UK have epilepsy. That’s around 1 in every 100 people.


Diagnosis


Getting a diagnosis is not always easy and can take time, as there are a number of conditions that can cause symptoms similar to epilepsy. There are a range of tests used to help diagnose epilepsy:


  • An electroencephalogram (EEG) which is used to check for unusual electrical activity in the brain that can happen in people with epilepsy. During the test, small sensors are attached to a scalp to pick up the electrical signals produced when brain cells send messages to each other. These signals are recorded by a machine and are looked at to see if they're unusual.

  • A magnetic resonance imaging (MRI) scan which can help spot problems in a brain that can sometimes cause epilepsy, such as brain tumour or damage to the brain

A diagnosis of epilepsy can be overwhelming and you are likely to have lots of questions. Newly diagnosed with epilepsy – your guide from Epilepsy Action can help you learn about epilepsy, find tips to help you manage your condition or come to terms with the diagnosis. Also, the Epilepsy Society has plenty on information on epilepsy covering issues like driving, pregnancy, benefits, travel and holidays, work and employment.


See the video of Derrick telling his story about his first seizure, being diagnosed and living with epilepsy:



Treatment


There is no cure for epilepsy, however the majority of people can achieve good seizure control with the right treatment. Treatment can help most people with epilepsy to have fewer seizures or stop having seizures completely. Treatment can include:

  • medicines called anti-epileptic drugs – these are the main treatment

  • surgery to remove a small part of the brain that's causing the seizures

  • a procedure to put a small electrical device inside the body that can help control seizures

  • a ketogenic diet that can help control seizures


You can find further information information on treatment on the NHS website.



HELPING someone HAVING a seizurE



Would you know what to do if someone was having a seizure?

  • 0%Yes

  • 0%No


It might be scary to witness someone having a seizure, but do not panic - there are some things you can do to help. How you respond to the situation will depend on the type of seizure the person is having. Watch the video below to see how to help someone having a tonic-clonic seizure - a type of seizure most people recognise.




Most people with epilepsy don’t need hospital treatment when they have a seizure, however

if you think someone is in status epilepticus you must call an ambulance immediately. Status epilepticus is when a seizure lasts longer than 5 minutes or when someone has one seizure after another without regaining consciousness in between. This is a medical emergency and the person requires urgent treatment to stop status epilepticus before it causes long-term damage. If status epilepticus lasts for 30 minutes or longer it can cause permanent brain damage or even death.


You should also call an ambulance if:

  • you know it’s the person’s first seizure

  • the seizure lasts longer than is usual for them

  • the person is seriously injured during the seizure

  • the person has difficulty breathing after the seizure


You can complete short online learning module from the Epilepsy Action to find out what to do when someone is having absence, atonic, focal, myoclonic, tonic or tonic-clonic seizures.



EPILEPSY AND EMPLOYMENT



Young man working in a factory

People with epilepsy have one of the lowest rates of employment among disabled people. Just over a third (33.9%) of people who identified epilepsy as their "main" health condition are in employment.


Epilepsy is a long-term condition and people with epilepsy are protected under the Equality Act 2010 in terms of employment even if their seizures are controlled or they don’t consider themselves to be ‘disabled’. Many people with epilepsy are able to work and successfully carry out their job duties. However, there might be some issues which can affect them at work so it's important for employers to understand employee's individual situation in order to provide a safe workplace and protect all their staff from any possible danger to their health while they are at work in accordance with The Health and Safety at Work Act (1974).


Whether someone’s epilepsy affects their work depends on the type of epilepsy they have, what their seizures are like and how often these happen. Risks to safety also depends on what the work involves. Some jobs may be a risk if someone has seizures, for instance, when employee is operating heavy machinery, driving HGV, working at heights, or near open water. As each situation is different, the employer usually needs to do a risk assessment to look at how employee's epilepsy could affect both their safety and the others at work. Risk assessment may conclude that there are no additional safety measures needed for your employee, or it could identify controls that would make work safer for all employees. If you are using your organisation's risk assessment template, you could use a checklist from Epilepsy Action to help you establish what might be a risk for employees with epilepsy at work.


Reasonable adjustments


The Equality Act 2010 also obliges employers to make reasonable adjustments to enable people with disabilities to access work and ensure that they are not at a disadvantage. Not everyone with epilepsy will need adjustments and any that are needed will vary depending on the person’s needs.



Adjustments that may be helpful to consider for someone with epilepsy include:


  • making their workspace safer in case they have a seizure, e.g. by providing a chair with arms to help prevent falling off

  • changes to working patterns, e.g. if an employee usually gets seizures in the morning, allowing them a later start, or if seizures are triggered by tiredness, moving an employee from night shifts onto day shifts or allowing fixed shifts times rather than changing a shift pattern

  • avoiding lone working so that someone else can help if employee has a seizure, or providing an employee with a seizure alarm which detects seizures and lets someone know so they can help them

  • providing access to a quiet place where an employee could rest after a seizure

  • re-allocating elements of a role to another team member if they can no longer be done because of epilepsy e.g. climbing up ladders

  • adapting equipment or providing equipment to help them do their job

  • considering epilepsy-related sickness separately from time off sick for other reasons

  • time off for medical appointments that is separate from sick leave

  • providing information in a preferred format, such as written instructions rather than verbal

What is seen as reasonable will depend on a range of factors and will be different for every organisation. Some general guidelines for working out what is reasonable include:

  • how practical the adjustment is to make and whether there are resources available

  • how effective the adjustment would be at removing the disadvantage to the employee

  • how the adjustment might affect other employees and the organisation

  • the cost of making an adjustment


Employers have to pay any costs for reasonable adjustments that are made and they cannot ask an employee to pay for a reasonable adjustment.


The role of Occupational Health


In order to comply with the current legislation and to support your employee in the best way possible, you may want to refer them to Occupational Health. Our Management Referral service can be useful in helping managers to identify how an individual’s epilepsy may or may not create risk in a particular employment setting. Our Occupational Health Advisors can advise on reasonable adjustments and provide guidance on how to support the employee on an ongoing basis. They could also assess employees on long-term or short-term sick leave, advise on the likely timescale of the absence and devise a suitable return to work plan.


Occupational Health Advisor having an appointment with an employee

Seizure action plan


Employers must remember that epilepsy is different for everyone. Not all people will have seizures during the working day – some may only have them when they’re asleep, while

others might have them when they first wake up before they go to work. And some people will be seizure-free.


To understand how epilepsy affects an employee, it’s a good idea to work with them to complete an individual seizure action plan. This plan helps to ensure people know what to do if a seizure happens at work. It covers:

  • Seizures – what happens, how to help and when it is an emergency

  • Trusted colleagues – who knows at work and preferred companions

  • Treatment – what medicine is taken and who can administer emergency medicine if needed

  • Support at work – the effect that epilepsy has, and the support that is in place


For further information on how to support employees with epilepsy at work, have a look at

  • Templates to help employers find out about their employees’ epilepsy, provide support, assess risks and talk about epilepsy in the workplace

  • Completed example templates to show how they can be used

  • Information about epilepsy and different types of seizure

  • Videos of how to help someone during seizures


Also, Employment. A guide for employees and employers from Epilepsy Society is a helpful resource which covers health and safety law, equality law and reasonable adjustments.



Mental health and wellbeing support


Coming to terms with the diagnosis of a long-term condition is not easy. It is completely normal for an employee to feel anxious, sad or even angry when they are told they have epilepsy. They may worry how the condition will affect both their personal and work life, how other people will view them, or they may feel that family, friends and colleagues will treat them differently now. Therefore, organisations should also put an emphasis on employees' mental wellbeing, especially because stress and anxiety can be a seizure trigger for some people with epilepsy. As an employer, you may want to direct your employees to 'Epilepsy and your wellbeing' free online course from Epilepsy Action, which aims to help people understand the relationship between epilepsy and wellbeing, and provide them with simple, practical advice to help them feel and function at their best. Moreover, an access to support services such as counselling and EAP schemes, may be invaluable in helping employees to look after their emotional health and wellbeing. At Corazon Health we can organise both face to face and telephone counselling sessions for your employees, which are conducted by practitioners registered with the British Association for Counselling and Psychotherapy. We also offer an Employee Assistance Programme (EAP) that has a complete resource of wellbeing services including 24/7, 365 counselling, legal and information line, as well as medical information line where qualified counsellors, nurses and advisors are on-hand to offer support and guidance on a range of issues.



Woman during counselling session discussing her problems

There are some charities and organisations that offer help and guidance for anyone diagnosed with epilepsy. Provide your employees with the details of how they can contact these organisations for support, for instance:



It offers a free telephone helpline available Monday to Saturday (0808 800 5050). It's also possible to send questions via a webform or by emailing: helpline@epilepsy.org.uk. People can also join the epilepsy community Discord server - a safe place for people living with epilepsy and their carers. Epilepsy Action offers online Talk and support groups and face-to-face groups which are a great way of connecting with others who have experiences of epilepsy, in a safe and relaxed environment. Moreover, anyone affected by epilepsy who is over the age of 18 and lives in the UK can access the befriending service if they are feeling lonely, isolated or just need someone to talk to.



People can call free and confidential helpline on 01494 601 400 (available Monday-Saturday) or email helpline@epilepsysociety.org.uk. There's also a webchat service available on their website.



It offers free helpline available from Monday to Friday (0808 800 2200). There's also an option to request a helpline call via Zoom from anywhere in Scotland. People can simply email the charity at contact@epilepsyscotland.org.uk and ask for a Zoom link to be set up at a time that is suitable for them. Also, the Check-in service offers regular weekly calls for around 10 weeks to anyone who has a diagnosis of epilepsy and may experience a difficult time in their life.



As an employer, it is important not to make assumptions about someone’s epilepsy and the impact it may have on their work. Applying good practice principles can allow organisations to identify any issues early to avoid more significant problems developing later in a person’s employment. Moreover, by finding out about employee’s epilepsy and what support they need, employers can help them to stay in work and retain their valuable knowledge and skills.


 

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