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Epilepsy and staying safe online

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Epilepsy and staying safe online

As social media continues to play an increasingly large role in modern life, this can bring with it extra challenges for people with epilepsy, especially for those who have photosensitive epilepsy (when seizures are triggered by flashing lights or contrasting light and dark patterns).

Videos and GIFs shared on social media platforms have the potential to trigger seizures in people with photosensitivity, if they contain flashing imagery at a certain frequency, or certain animated patterns.

Additionally, for social media users both with and without epilepsy, flashing imagery and animated patterns can be simply uncomfortable to look at, especially when they appear without warning e.g. on a social newsfeed.

Minimising your online risk

Despite these challenges, many people with epilepsy and their friends, family and carers find social media a great way to connect with others, find information and share experiences. With this in mind, we have outlined below some simple steps you can take to reduce your risk of exposure to potentially harmful content online so you can continue to enjoy the many benefits of social media as safely as possible.

You can skip to a section by clicking the relevant header below, or scroll to read through the entire article:

Turning off autoplay on social media

‘Autoplay’ means when videos and GIFs on social media platforms begin playing automatically when you scroll past or view content e.g. someone you follow has posted a video that you have been tagged in.

As videos and GIFs can sometimes contain flashing imagery and animated patterns, switching off the autoplay feature can be a good way to make social media safer so you can choose when to watch videos and see animations, rather than having them automatically start playing.

We’ve outlined below step-by-step instructions on how to do these on each of the most popular social media platforms, as well as how-to videos on how to turn off the autoplay feature.

Twitter

N.B. If you use Twitter on both a desktop and mobile, you will need to go into each device separately to turn off the autoplay setting.

On mobile or tablet (iOS and Android)

1. Open the Twitter mobile app and log into your account (If you are on your Profile, click on the dark arrow icon on the top left of your screen THEN/OR if you are on the Timeline (the house icon) click on your small profile picture on the top left of the screen)
2. Click on ‘Settings and privacy’ from the left-hand menu, which is the second setting up from the bottom
3. Within ‘Settings and privacy’, click ‘Data usage’ which is the second option beneath the bold ‘General’ heading
4. Within ‘Data usage’, click on the fourth option down ‘Video autoplay’
5. Within ‘Video autoplay’, click on the third option ‘Never’

On desktop

When you’re using Twitter on a desktop, such as a laptop computer, follow the below instructions to turn off the autoplay feature:

1. Log into your account on a web browser at www.twitter.co.uk
2. On the left-hand menu, click on ‘More’, which is above the large blue ‘Tweet’ button
3. Click on ‘Settings and privacy’ which is the third option from the bottom
4. Within ‘Settings and privacy’, click ‘Data usage’ which is the second option beneath the bold ‘General’ heading
5. Within ‘Data usage’ , click on the second option ‘Autoplay’
6. Click on the second option within ‘Autoplay’ that says ‘Never’

Following these instructions means that videos and GIFs that appear within Twitter will not play automatically.

Emma would like to increase the awareness of epilepsy

Emma was diagnosed with epilepsy three years ago, but has been seizure free for around a year. She has recently started doing some volunteer work with epilepsy charities such as Epilepsy Action doing awareness presentation training in schools and workplaces and is currently undertaking an accredited volunteer position with them. However, she is keen to expand her volunteer work into sharing her story and is keen to help with raising awareness in any way she can.

New technique looks inside the brain to understand more about epilepsy

Dr Simona Balestrini, the Muir Maxwell Trust Research Fellow at Epilepsy Society and Honorary Clinical Associate Professor at UCL Queen Square Institute of Neurology, has embarked on a three year project using a pioneering technique to look at the activity of the brain in people with epilepsy. Here she explains what she hopes to achieve in her work with Transcranial Magnetic Stimulation (TMS) used in conjunction with electroencephalography (EEG).

Mel's story

Mel talks about her experience from being first diagnosed with epilepsy, to becoming pregnant and seeking treatment and support from Epilepsy Society at our Sir William Gowers medical centre.

#TravelKind - Tom Ryan-Elliot's story

If you travel on the London Underground or across the capital by bus, you may recognise Tom's face. He has been part of Transport for London's Priority Seating Campaign which aims to raise awareness of hidden disabilities on public transport. Tom has been the face of epilepsy. Here he talks about his epilepsy and the difficulties of taking a priority seat when you are a healthy looking young man.

Epilepsy Society residents go skiing

Professor Matthias Koepp is training to be an adaptive snowsport instructor so that he can share the thrill of the slopes with the residents with epilepsy and other complex needs at Epilepsy Society. Recently, with help from Epilepsy Society's activities team, he took 3 of the residents skiing at Hemel Hempstead's Snow Centre. Watch our video of the day at the bottom of the page.

Princes to Kings - a Purple Day band

Zac (12), Finn (15) and Josh (18) are all musicians in their band, Princes to Kings. They want to raise awareness about epilepsy and were inspired to form their band by their eldest sibling, Luke, who has a severe form of epilepsy. We asked Princes to Kings about their experience with epilepsy and about their upcoming headline gig for Purple Day, in support of Epilepsy Society, on March 25.

Slipping through time

On 1 June at 2.15pm, just after The Archers, BBC Radio 4 will be broadcasting a new play, Slipping through time. Written by Louise Monaghan, the play follows the story of a young mum with epilepsy. Louise talks to Nicola Swanborough about her research and inspiration for the play.

Suzanne's story

After 20 years of epilepsy and a cocktail of medications, Suzanne Elliott has written her first novel, And I Love Her. She explains how writing has helped her shape a new life.

Epilepsy on safari

Louise Glover was determined not to be defined by her epilepsy. But it was only on safari in South Africa, working with cheetahs and rhinos, that she began to discover who she really is and how her seizures are only a very small part of her. Louise tells her story.

Epilepsy and electricity

Our digital marketing officer, Carl Charlesworth, went to the premiere of the film Electricity on 18 October at the Vue cinema in Islington, London. Electricity is the powerful story of a young woman's struggle to find her long lost brother while coping with uncontrolled seizures.

Epilepsy in Africa

Ten million people in Africa are affected by epilepsy, and 80 per cent of those are not treated with readily available modern drugs. Professor Ley Sander, Epilepsy Society’s medical director, describes the challenges of working in Africa.

Fits and starts: running, falling, fleeing

A book about what? Why? Oh! There’s always an oh! I wrote a memoir about living with epilepsy. Living with epilepsy: a contradiction in terms? Would the word ‘surviving’ be more appropriate? Perhaps, for some, for many. When the idea was first suggested to me I laughed out loud. That nervous laugh, the one wreaking of self doubt and ambivalence. Then, after a particularly bad cluster of seizures I decided to give it a go- I had nothing to lose and there’s only so many times you can watch Bruce Willis save the world barefoot.

David's story

David, who has had epilepsy since he was four years old, tells his story about his experiences of living in different hospitals and homes throughout the course of his life.

Trekfest

Take on the TrekFest challenge –With 25km and 50km routes to choose from, whether you walk, jog, or even run you’ll be challenging yourself in one of the UK’s most beautiful national parks – the Brecon Beacons, South Wales.

Royal Colleges publish new guidance around use of valproate for women and girls of childbearing age with epilepsy

New guidance brings greater clarity for doctors and patients in implementing MHRA regulations around use of sodium valproate for women and girls of childbearing age with epilepsy
Charity hopes guidance will help to address some of the complex situations that arise in individual cases

€2.5 million genomic research programme brings hope of seizure-free life for people with epilepsy

  • New partnership launched on International Epilepsy Day (11 February 2019) could mean life-changing treatments for people with epilepsy
  • Genomic sequencing could lead to 200,000 people with uncontrolled seizures in the UK having the chance of more effective, personalised medication
  • Unique UK-Brussels collaboration stands to benefit up to 17 million people across the world with epilepsy
  • Gov pledges to exempt epilepsy from latest emergency medicine plans post-Brexit

    Epilepsy Society is pleased to hear that the Government has promised to exempt people with epilepsy from its most recent plans for potential post-Brexit medicine shortages. The Department of Health and Social Care is proposing to give pharmacists power to dispense alternative drugs if those prescribed by GPs are in short supply after Britain leaves the EU.

    Next stage in genetic research brings us closer to understanding epilepsy

    More than 800 DNA samples from Epilepsy Society have now been sequenced as part of Genomics England's landmark 100,000 Genomes Project. This means our researchers, bioinformaticians and clinicians are at the exciting stage of being able to analyse the new data, bringing hope of groundbreaking results in the diagnosis, treatment and understanding of epilepsy.

    How a pioneering software system is transforming brain surgery

    A pioneering new approach being trialled at University College London Hospital (UCLH) hopes to make epilepsy surgery safer and easier. A team of researchers, clinicians and engineers from Epilepsy Society, UCLH, UCL and King’s College London have developed a world-leading software system called EpiNav, which stands for epilepsy navigation, and their work is being featured on today’s episode (10 October 2018) of the BBC’s Trust Me I’m a Doctor.

    Epilepsy Society welcomes new measures to ensure no babies are exposed to sodium valproate during pregnancy

    New measures announced to stop babies being exposed to valproate in the womb
    Valproate medicines are available in the UK under brand names such as Epilim, Epival, Episenta, Convulex and Orlept
    No girl or woman should stop taking valproate without first consulting her doctor.

    Epilepsy Society praises Government decision to review handling of concerns around sodium valproate

    Epilepsy Society's chief executive Clare Pelham has praised the Government's decision to announce a forward-looking review that will address the way the healthcare system has handled the concerns of patients in its care and make certain that lessons are learned and history does not repeat itself.

    Women still not aware of epilepsy medicine risk in pregnancy

    Almost 1 in 5 (18%) women currently taking the epilepsy medication sodium valproate do not know it can harm the development and physical health of their unborn child should they become pregnant
    more than a quarter (28%) of women taking the epilepsy drug have not been given information about risks for their unborn child
    more than two thirds (68%) of women taking the epilepsy drug have not received specially produced valproate materials released in February 2016
    Charities call on government to make annual reviews mandatory for women taking the drug

    Light therapy for people with epilepsy

    Bright light therapy – commonly used to treat seasonal affective disorder – can reduce levels of depression and anxiety in patients with epilepsy, according to new research published online today by the British Journal of Psychiatry. Epilepsy Society’s consultant neuropsychologist Dr Sallie Baxendale was the lead researcher in the study of more than 100 patients with focal epilepsy not controlled by medication

    Cumberlege Review slams way healthcare system has responded to families affected by sodium valproate

    After a two-year review led by Baroness Cumberlege, right, the Independent Medicines and Medical Devices Safety Review has today published its report into three medical interventions: the epilepsy medication, sodium valproate; the hormone pregnancy test, Primodos;  and pelvic mesh implants.

    Seizures and hot summers

    Thank you to everyone who took part in our recent surveys looking at the impact of excessively high temperatures on seizures. These have provided us with some invaluable insight into the link between the two and will help to influence our work as we experience increasingly hot summers.

    Record fines for drug companies who overcharged NHS for anti-epilepsy drug

    Pfizer was fined a record £84.2m by the Competition and Markets Authority (CMA) for increasing the price of its phenytoin sodium capsules by between 2,300-2,600 per cent over night in 2012. The CMA also fined distributor Flynn Pharma £5.2 million after it accused the pair of "excessive and unfair" pricing for the vital medicine used by around 48,000 patients in the UK.

    Epilepsy Society needs you

    Do you have experience of working in social care, or do you have lived experience of supporting someone with complex care needs? Maybe you have taken early retirement from care work or are thinking of a career supporting people with disabilities. If so, the Epilepsy Society would love to hear from you. 

    Genomics

    Read how we are working to understand the genetic architecture of each individual person's epilepsy through our world leading genomics research programme.

    Fund groundbreaking research

    subtitle: Support us

    We aim to bring forward the day when epilepsy is not a hidden disability – no longer a stigma that is hidden in the shadows and misunderstood. Help shape the future of clinical provision for people with epilepsy. Join us in being part of this journey by giving your support.

    Walk around our laboratory

    subtitle: 360-degree experience

    Take part in our immersive 360-degree experience which takes you on the journey of a genome through our wet laboratory. Our research team will explain what happens to a patient's genome at every stage through video and interactive elements.

    Care services

    We are the leading charity care provider, where people love to work and live. Our wide range of care is tailored to the needs of each individual, and our professional staff are committed to maximising the life potential of everyone within our care homes.

    Donate to Epilepsy Society

    In these challenging times, we rely on donations to ensure vital services for our beneficiaries can continue. If you can spare a donation or pledge a monthly gift, you can help fund research breakthroughs and provide vital support for everyone affected by epilepsy.

    Pledge a regular gift

    In these challenging times, charities rely on donations to ensure vital services for our beneficiaries can continue. If you can pledge a monthly gift, you will be helping to ensure we continue to support everyone affected by epilepsy. Thank you.

    Our researchers

    subtitle: Meet the team

    Meet the team at Epilepsy Society leading the way in global research. Our team are passionate about translating research findings to improve the lives of people with epilepsy.

    Join our team

    subtitle: Join us

    Epilepsy Society’s Chalfont Centre is unique in bringing together intellectual capital to form a powerhouse multidisciplinary team who contribute to a wide ranging spectrum of research. It is only by working together that we will be able to translate the findings of our research into clinical medicine.

    Predicting and reducing the risks of avoidable deaths from epilepsy

    subtitle: Genomics

    Almost 1 in 100 people in the UK have epilepsy and they are 2-3 times more at risk of premature death and 20 times more at risk of sudden unexpected death compared to the general population. Our SUDEP project is undertaking whole genome sequencing on 100 DNA samples to try to identify genetic changes that may increase a person's susceptibility to SUDEP.

    3D Stereophotogrammetry

    subtitle: Genomics

    We know that the shape of the human face is influenced by genetic factors. Now our researchers are using 3D imaging, or three-dimensional stereophotogrammetry, to try to establish whether there is a link between face shape and genetic variations which can lead to epilepsy.

    DOORS Syndrome Has Genetic Cause

    subtitle: Genomics

    We are using whole genome sequencing to help us understand the many causes of epilepsy. This builds on many years of studying epilepsy by investigating the exome, or protein-encoding part of our genes which accounts for 10 million letters. Read about our research to understand the genetic causes of DOORS syndrome using exome sequencing.

    Epilepsy Society, UCL and Congenica collaborate in genomic study to identify causes of SUDEP

    Approximately 1 in 1,000 adults with epilepsy and 1 in 4,500 children with the condition lose their lives to Sudden Unexpected Death in Epilepsy (SUDEP) every year. Congenica, the global diagnostic decision support platform provider, is collaborating with Epilepsy Society's Chalfont Centre and UCL to study the genomics of SUDEP.

    Professor Ley Sander

    Ley Sander is Professor of Neurology, Head of the Department of Clinical and Experimental Epilepsy at UCL Queen Square Institute of Neurology, Consultant Neurologist at UCLH National Hospital for Neurology and Neurosurgery and Medical Director at Epilepsy Society.

    Dr Helena Martins

    In her current role as a Bioinformatician Helena is applying computational and statistical methods to analyse complex genomics data in order to understand the genetic architecture of different types of epilepsies.

    Functional MRI

    In the last 20 years we have been using functional MRI (fMRI) at Epilepsy Society's Chalfont Centre to map where different functions such as language and vision occur in the brain.

    Brain scans

    In order for a person to be suitable for surgery, it is necessary to confirm that seizures are arising from one part of the brain and that it is safe to remove this part. This requires many tests including MRI brain scans.

    Epilepsy Navigator

    Epilepsy Navigator is an interactive 3D-neuronavigation system that enables the best operative approach for inserting electrodes into the brain in order to pinpoint the areas where seizures arise from. These plans are now being used to direct a robotic system for placing the electrodes through the skull and into the brain.

    Steps

    Our supported living service is available to adults with epilepsy who may also have other associated or additional complications. The service provides people with the opportunity to live with greater autonomy and independence in the community.

    Micholls House

    Micholls House is all about individualised care and empowerment. Residents are encouraged to be involved in all decisions about their lives - what they choose to eat each day, what they wear, what activities they take part in, what trips they go on and whether they choose to use our on-site health services or their own.

    Queen Elizabeth House

    Our specialist nursing care for adults with epilepsy is provided in Queen Elizabeth House at our Chalfont Centre in Buckinghamshire. In addition to their epilepsy, residents often have associated and additional complications, including physical and learning disabilities, brain injury and autism.

    Our staff

    Our care service team provides a person-centred approach, and the residents are at the centre of everything we do. One aspect of this is that we involve residents in the development and delivery of staff training.

    Diverse care options

    We offer care and support in residential and nursing settings. Each home provides a relaxed and friendly atmosphere, and residents are empowered to live as full a life as possible within a supportive environment.

    Diagnosing epilepsy

    If there is a possibility that you have epilepsy, NICE recommends that you are referred to a specialist, (a doctor who is trained in diagnosing and treating epilepsy) within two weeks. Your diagnosis is based on finding out what happened to you before, during and after your seizures.

    Ketogenic diet

    The ketogenic diet is one treatment option for children or adults with epilepsy whose seizures are not controlled with AEDs. The diet may help to reduce the number or severity of seizures and may have other positive effects.

    Vagus Nerve Stimulation

    Vagus nerve stimulation therapy is a treatment for epilepsy that involves a stimulator (or 'pulse generator') which is connected, inside the body, to the left vagus nerve in the neck. The stimulator sends regular, mild electrical stimulations through this nerve to help calm down the irregular electrical brain activity that leads to seizures.

    Deep Brain Stimulation

    Deep brain stimulation therapy is a surgical treatment which aims to reduce seizures not controlled with medication, and where surgery to treat the cause of seizures is not possible. It involves implanting electrodes into specific areas of the brain.

    Sodium valproate

    Sodium valproate is an epilepsy drug prescribed for all seizure types including absence, myoclonus and tonic clonic seizures. New regulations have been introduced by the Medicines and Healthcare products Regulatory Agency (MHRA) around the way in which the drug, sodium valproate is prescribed to women and girls of childbearing age. 

    Residential care and CQC reports

    Our specialist residential care for adults with epilepsy is provided at our Chalfont Centre in Buckinghamshire. We provide residential care for approximately 90 adults, who in addition to their epilepsy, often have associated and additional complications, including physical and learning disabilities, brain injury and autism.

    Reactions to a diagnosis

    People can react differently to a diagnosis. You might feel lots of different emotions. It may not be possible to think and feel positively, or you may feel fine one minute, and upset or angry the next. It may be helpful to know that this is a common way to feel.

    Are there risks to my baby?

    Most women with epilepsy will have a normal pregnancy and labour and over a 9 in 10 (90%) chance of having a healthy baby. Women with epilepsy have a slightly higher chance of having a baby with a birth defect due to genetic conditions, injury during seizures and anti-epileptic drugs (AEDs). Talk to your neurologist about how you can reduce the risk to your unborn baby.

    Parenting and epilepsy

    If your seizures (or your partner’s) are controlled, then epilepsy may not affect how you look after your child. However, parents who have seizures may find taking extra safety measures helpful. This depends on the type of seizures and the activity involved.

    Epileptic seizures

    There are many different types of epileptic seizure. Any of us could potentially have a single epileptic seizure at some point in our lives. This is not the same as having epilepsy, which is a tendency to have seizures that start in the brain. 

    Seizure types

    In March 2017 the International League Against Epilepsy (ILAE), a group of the world's leading epilepsy professionals, introduced a new method to group seizures. This gives doctors a more accurate way to describe a person's seizures, and helps them to prescribe the most appropriate treatments.

    Absence seizures

    Absence seizures are more common in children than adults and can happen very frequently. During an absence a person becomes unconscious for a short time. They may look blank and stare, or their eyelids might flutter. They will not respond to what is happening around them. If they are walking they may carry on walking but will not be aware of what they are doing.

    Tonic and atonic seizures

    In an atonic seizure (or 'drop attack') the person’s muscles suddenly relax and they become floppy. If they are standing they often fall, usually forwards, and may injure the front of their head or face. Like tonic seizures, atonic seizures tend to be brief and happen without warning. With both tonic and atonic seizures people usually recover quickly, apart from possible injuries.

    Myoclonic seizures

    Myoclonic means ‘muscle jerk’. Muscle jerks are not always due to epilepsy (for example, some people have them as they fall asleep). Myoclonic seizures are brief but can happen in clusters (many happening close together in time) and often happen shortly after waking.

    Why do seizures happen?

    Your brain controls the way you function. Inside your brain, millions of nerve cells (neurones) pass messages via electrical signals to each other. During a seizure these electrical signals are disrupted and this affects how you feel or what you do while the seizure is happening.

    Seizure diaries

    Keeping a seizure diary can be useful to help you record when your seizures happen and to see whether there are any specific triggers for your seizures. Sometimes, known triggers can be avoided to help reduce the number of seizures.

    Referral to tertiary care

    Care and treatment: your rights and choices says: ‘If your seizures are not controlled, or your diagnosis is not clear, you should be referred to tertiary care.’ This is so that you can be seen by someone with expertise in epilepsy, and have access to investigations to help you. This is a recommendation, not a legal right.

    Comprehensive care plan

    Care and treatment: your rights and choices says: ‘You should have a comprehensive care plan agreed with your healthcare professionals, which should include both medical and lifestyle issues. You should also have an annual review of your epilepsy.’

    Choice of care

    Care and treatment: your rights and choices says: ‘You have a right to choose who provides your care.’ You can choose which hospital to go to, and can ask for a second opinion about your health condition or treatment.

    Freedom from discrimination

    Care and treatment: your rights and choices says: ‘You have a right to be treated with dignity and respect and to not be discriminated against.’ People with epilepsy are protected under the Equality Act 2010, which makes discrimination unlawful. This includes discrimination on the basis of disability.

    Privacy policy

    This website privacy policy aims to help you to understand what information Epilepsy Society might collect and process about you. Epilepsy Society is committed to protecting and respecting your privacy.

    Functional MRI

    In the last 10 years we have been using functional MRI (fMRI) at Epilepsy Society's Chalfont Centre to map where different functions such as language and vision occur in the brain. For example our research has enabled us to see exactly which part of the brain we use if we want to think of words, name objects or describe a picture. This ability to visualise the communication and thought networks in the brain is enabling us to protect these during surgery and assess how some medications may affect our speech and cognitive abilities.

    Sleep and epilepsy

    Having a good night's sleep helps our brains to recover from the day's events, so that we can function well the next day. For some people with epilepsy a lack of sleep can make seizures more likely to happen, for others having seizures at night can make them feel tired during the day.

    Universal credit

    Universal Credit is now available to all new claimants (unless they get, or are entitled to get, Severe Disability Premium). It is a benefit for working-age people (usually 16 to 64 years) who are on a low income, or who are looking for work and will replace some existing benefits, listed below.

    How to apply for PIP

    Personal Independence Payment (PIP) is a UK benefit for people over the age of 16, to help with any additional costs due to having a long-term disability or health condition. This information is designed to help you with the first stage of applying for PIP - making a claim.

    How to fill in your PIP form

    It is important that you fill in your form promptly and try not to put it off, even if it looks difficult. There is a short time frame for filling in and returning your form (usually one month), and this should be explained in the information you get from the DWP, which will include the deadline for returning the form.

    Preparing food

    This activity is about whether you can prepare and cook a simple, hot, one-course meal from fresh ingredients (not ready meals). It is not about how good you are as a cook, but about whether your medical condition(s) affects your ability to prepare a simple, hot meal.

    Eating and drinking

    This activity is about physically feeding yourself, eating and drinking, and whether you are able to do this unaided, or with help. It does not include preparing food (covered in activity 1). Nutrition means food and drink.

    Dressing and undressing

    This activity is about your ability to dress and undress, including choosing, and putting on appropriate and non-adapted clothing that is suitable for the situation, including socks and shoes. This may include dealing with fastenings such as zips or buttons.

    Moving around

    This activity is about being able to physically move around, focusing on being able to stand up and walk unaided, without severe discomfort such as breathlessness, pain or fatigue.

    Day case admissions

    You may be asked to come to the Sir William Gowers Centre as a day case admission. You will not be required to stay overnight so will not need to bring an overnight bag with you. However, you should bring your medication and continue to take it as normal.

    Inpatients

    While at the Sir William Gowers Centre we will do everything we can to make you comfortable. The following information will help you to prepare for your visit. If you have any questions about your stay, please contact us on 01494 601 480.

    Outpatients

    The following information will help you to prepare for your outpatient appointment at the Sir William Gowers Centre. If you have any questions about your appointment, please contact us on 01494 601435.

    Sample type

    The matrix of choice is serum or plasma, and although they can be used inter-changeably it is preferable to use one or the other. In most clinical settings the measurement of total serum concentrations will suffice and indeed most routine methods for measuring AEDs in sera do not discriminate between the component of drug that is free (unbound) and that that is bound to serum proteins.

    Using the TDM service

    The assay service is routinely available Monday to Friday, 9am-5pm. For urgent assay requests, please contact the unit in advance. The unit will report on non urgent assay requests within 3 working days of receiving the sample in the laboratory, excluding weekends or bank holidays.

    Are you #seizuresavvy?

    Our #seizuresavvy campaign focuses on tonic clonic seizures as these are the type of seizure that are most easily recognised. The charity’s new campaign gives people three simple but key instructions to remember in an emergency: “Calm, Cushion, Call.”

    Status epilepticus

    A person's seizures usually last the same length of time each time they happen and stop by themselves. However, sometimes seizures do not stop or one seizure follows another without the person recovering in between. If this goes on for 5 minutes or more it is called status epilepticus or ‘status’.

    Campaigns

    Our campaigns team lobby government and decision-makers on the issues that matter to people with epilepsy. From safer medicines for pregnant women to the dangers of online harm, and from medicines supply to public transport access, we raise awareness of the daily challenges facing people with epilepsy – putting your needs at the heart of what we do.

    Me and my shadow scheme

    We launched our 'Me and My Shadow' scheme on International Women's Day. Our Me and My Shadow scheme provides opportunities for women with epilepsy to shadow women in a range of different careers for a day. It aims to build confidence and ambition in women with epilepsy and encourages them to think big.

    Everyone knows someone

    Our 'Everyone Knows Someone' campaign was a yearly joint campaign between Young Epilepsy and Epilepsy Society in association with River Island, to raise awareness of epilepsy during national epilepsy week. Meet the faces of our 'Everyone Knows Someone' campaign below.

    Anxiety

    Everyone feels anxious at times. When you are frightened or feel threatened, your heart beats faster, your muscles tense and your body prepares you to ‘fight’ the threat, or to run away from it – ‘flight’.

    Depression

    We all feel low and depressed sometimes, without it being a medical problem. Depression becomes a problem when the unhappy feelings don’t go away and it affects our daily life: eating, sleeping or being able to get out of bed.

    Mood and epilepsy

    Epilepsy affects everyone differently. Some people with epilepsy may find that problems with their mood can affect their epilepsy and how it is managed. How you feel may be different and your view of epilepsy may also change over time.

    Memory

    Memory can be one of the key issues that affects people with epilepsy. This can be for many reasons, including the type of seizures they have, the effects of medication, the effects of epilepsy on concentration or mood, lack of sleep, age, or the effects of epilepsy surgery.

    Finding support

    Epilepsy and seizures can affect people in different ways. Support can mean finding understanding, ways to cope, or to feel more in control about living with epilepsy. Here are various ways that you can find support if you need it.

    Relationships and sex

    Many people with epilepsy have fulfilling relationships with a partner. However, epilepsy may affect relationships for some people, and problems with sex are common for both men and women with epilepsy. There are various ways to manage these problems and find support.

    Keeping safe at home

    If your seizures are controlled by treatment, your safety may not be affected. But if you continue to have seizures, safety may be an issue. Some safety issues may not be relevant to you or you may have your own ideas about what would make situations safer for you. Here are some suggestions to help you think about your safety at home.

    How memory works

    Throughout our lives, memories are being made, stored and found by our brain. Links made between our brain cells help us to remember the thoughts, skills, experiences and knowledge that make each of us unique. Memory can be one of the key issues that affects people with epilepsy.

    Epilepsy for pharmacists

    Guide for pharmacists working in registered pharmacy premises in the UK, co-produced by Epilepsy Society and Medway School of Pharmacy. Includes information about treatment, seizure types, points to cover with patients taking AEDs and materials pharmacists can give to their patients.

    For commissioners

    Commissioning is a key driver of quality, efficiency and outcomes for people with epilepsy. Over the past decade it has become increasingly important to the health system in England. We've partnered with Epilepsy Action to design the new 'Epilepsy Commissioning Toolkit' to help commissioners provide better health services for people with epilepsy.

    Training courses on epilepsy

    Our courses are available to a wide range of people looking to develop their understanding of epilepsy for professional or personal reasons. Delegates include carers, school escorts, post-graduate students as well as commercial organisations, GP surgeries and drug company representatives. 

    General reading list

    Many of these books are available to buy from Amazon. To buy from Amazon simply click on the links below. By using these links, you will automatically donate about 5% of the price of the book to Epilepsy Society, at no cost to you.

    Epilepsy helpline

    Epilepsy Society's confidential helpline is available for anyone affected by epilepsy. We welcome calls from people with epilepsy, their families and friends, as well as professionals such as doctors, nurses, care workers, teachers and employers.

    Our work

    Epilepsy Society is the UK’s leading provider of epilepsy services.  Through our cutting edge research, awareness campaigns, information resources and expert care, we work for everyone affected by epilepsy in the UK.

    Driving

    If you drive, one immediate effect of having a seizure is that you have to stop driving. This is true for all types of seizures, and whether you have a diagnosis of epilepsy or not. For many people, this can have a big impact on their life and it may be very difficult or upsetting.

    Work and employment

    Having epilepsy does not necessarily stop someone from doing the job they want, but there are some issues which can affect them at work. Whether someone’s epilepsy affects their work depends on whether they have seizures, what their seizures are like and how often these happen.

    Sport and leisure

    To live full and active lives, and look after our physical and emotional wellbeing, we all need time to rest, relax and exercise. How we spend our leisure time is important and individual to us all, whether or not we have epilepsy.

    Women and epilepsy

    Some issues around epilepsy and its treatment are specific to women and do not apply in the same way to men. These include links between epilepsy and hormones, puberty, contraception, pregnancy and the menopause.

    University and epilepsy

    If you're considering going to university or if you’ve definitely decided that’s what you want to do, you’ll need to think about what this will mean for you in practical terms and about what support you might need, including financial support. Being well prepared will help you to make the most of your time at university.

    Car insurance

    If you stop driving due to a seizure, you need to tell your insurance company as part of your insurance terms and conditions. If you don't tell them, this could invalidate your insurance and may affect your insurance in the future.

    Help with work and training

    You can look for a job through your local Jobcentre Plus office, personal contacts, newspapers and websites adverts or employment agencies.

    Jobcentre Plus offices have Disability Employment Advisers (DEAs) who provide support to people with disabilities. They may be able to help with assessments, referral to schemes for people with disabilities (such as Work Choice), job matching and information on employers who are positive about employing people with disabilities.

    What jobs can I do?

    Employers cannot legally refuse to give you a job just because you have epilepsy. However, they need to consider your epilepsy, and what the job involves, to ensure your safety and that of other employees.

    Telling your employer about your epilepsy

    Some people worry that telling an employer about their epilepsy might affect their chance of getting a job or being treated fairly at work. Although discrimination can happen, the Equality Act 2010 aims to protect you from discrimination, and help your employer to treat you fairly and support you at work. Having the right information about your epilepsy can help employers to do this.

    Information for employers

    When employing someone with epilepsy, it is important to consider their individual situation, and base any decisions on fact. This means looking at their epilepsy and the effect it might have on their work. Talking to them about what their epilepsy is really like, and how it might affect their work, is more helpful than making assumptions about how it affects them.

    Travel and holidays

    Having epilepsy does not usually prevent people from being able to travel by air. However, some people’s seizures are triggered by being very tired (which could happen because of long journeys or ‘jet lag’).

    Travel and holidays

    Having epilepsy does not usually prevent people from being able to travel by air. However, some people’s seizures are triggered by being very tired (which could happen because of long journeys or ‘jet lag’).

    Contraception and epilepsy

    Some methods of contraception may be less effective in preventing pregnancy for women taking certain anti-epileptic drugs (AEDs). This is because some AEDs (enzyme-inducing AEDs) affect how well methods of contraception work. Non-enzyme-inducing AEDs are unlikely to affect contraception.

    Art therapy and seizures

    Art therapy allows people to explore their emotions and feelings through the process of creating, painting or drawing. This service is run by a qualified art therapist who offers individual and group sessions and forms secure relationships with the participants.

    Arts and crafts

    We give users the chance to use conventional art materials to express their own personal creativity. This includes using a self-drying clay in many sessions for sculpting and relief work.

    Fundraising at home

    Fundraise from your home and support our work, by joining us and thousands of others in taking on the 2.6 Challenge. Every pound that you donate and raise will ensure that our committed staff team can continue to offer vital support to people affected by epilepsy.

    Corporate giving

    We know that the workplace can be a real force for good. Charity partnerships can help motivate staff and give you something special to tell your customers and shareholders. We can help your employees get involved in our work. 

    Share giving

    Did you know you can donate shares and investments to Epilepsy Society? By giving shares you can help us support the nearly half a million people with epilepsy in the UK and possibly earn yourself a double tax benefit at the same time.

    William's Warriors

    When William was 10 months old, he had his first seizure. I was in the kitchen when my brother screamed for me. “He’s not breathing, I don’t know what happened!” I heard him yell. I ran in and grabbed him, held him in my arms on his side and waited for the paramedics to arrive. Twelve minutes. Twelve minutes and they were on our door with oxygen on him.

    Create your own group

    Create a dedicated fund in memory of a loved one, set up by a person living with epilepsy or by someone inspired by someone lived with epilepsy. All the money raised by our Fundraising Groups goes towards our charitable objectives.

    Make a Will

    If you don't yet have a Will, this advice can help you in the process of making one. If you already have a Will, you can find out how to update it to include a gift to Epilepsy Society.

    Corporate giving

    We know that the workplace can be a real force for good. Charity partnerships can help motivate staff and give you something special to tell your customers and shareholders. We can help your employees get involved in our work. 

    Corporate partners

    We work with our corporate partners to deliver sustainable partnerships, that have genuine impact whilst meeting business and CSR objectives. Together we will build an innovative, long-term and engaging partnership that makes a real difference. Our aim is for your partnership to be both rewarding and fun for your employees.

    Volunteer

    There are so many ways to volunteer and make a difference to the lives of people affected by epilepsy. Whether you'd like to volunteer at our Chalfont Centre, or in your local community, we'd love to hear from you.

    Volunteering at Chalfont

    The volunteers at Epilepsy Society make an invaluable difference to the lives of the 92 residents who live on site, all of whom have epilepsy often as part of more complex needs. Due to coronavirus pandemic, volunteers are not currently volunteering within the Care Homes at our Chalfont Centre. We are still encouraging anyone interested in our volunteer roles to get in touch.

    Help raise public awareness

    Talking to the media about epilepsy is a valuable way of helping to increase public awareness. Would you be willing to talk to the press about your experiences of epilepsy? You can help us raise awareness by volunteering as a media contact and sharing your story.

    Help raise public awareness

    Talking to the media about epilepsy is a valuable way of helping to increase public awareness. Would you be willing to talk to the press about your experiences of epilepsy? You can help us raise awareness by volunteering as a media contact and sharing your story.

    our gender pay gap

    From 6 April 2017, any employer in the UK with more than 250 employees is required by law to publish their gender pay gap annually, covering both pay and bonuses. We are committed to equality and inclusion, and we welcome the Government's requirements.

    Epilepsy review magazine

    Epilepsy Review is our magazine for everyone affected by epilepsy. Articles cover developments in medical treatments and research, advice on how to stay well, topical articles about epilepsy, employment, the law, politics, culture, campaigns and humour from the epilepsy world. It is published twice a year and written by epilepsy specialists.

    EEG (Electroencephalogram)

    An Electroencephalogram (EEG) records the electrical activity of the brain by picking up the electrical signals from the brain cells. These signals are picked up by electrodes attached to the head and are recorded on paper or on a computer. The recording shows how the brain is working.

    Our people

    Read biographies for members of our board of trustees, president and vice president, and our senior management team including our CEO Clare Pelham (pictured above).

    Epilepsy Society facts

    Doctors and scientists at Epilepsy Society are making a major contribution to the world's research into the causes, diagnosis and treatment of epilepsy, pioneering novel diagnostic techniques and making possible improvements in both surgical and medical treatment of the condition.

    Paige Dawkins

    Paige is the Marketing and Communications Executive at Epilepsy Society helping us to grow our social community so that we can reach and help as many people affected by epilepsy as possible.

    Natasha Ward

    Natasha is working at Epilepsy Society as our Digital Marketing Officer; helping to create and run campaigns, as well as extend the reach and effectiveness of the charity’s online presence.

    Our Chalfont Centre

    Over the course of a history that spans three centuries, the DNA of both Epilepsy Society and Chalfont St Peter have become intrinsically entwined. The village is very much a part of the life blood of the charity and vice versa.

    Coffee shop

    We offer a very warm welcome to all in our community Coffee Shop. We sell a wide range of coffee, flavoured teas, milkshakes and smoothies to quench your thirst at very reasonable prices.

    Epilepsy Society facts

    Doctors and scientists at Epilepsy Society are making a major contribution to the world's research into the causes, diagnosis and treatment of epilepsy, pioneering novel diagnostic techniques and making possible improvements in both surgical and medical treatment of the condition.

    Neill's story

    Neill Lowdon is an artist from Cornwall who has recently sold 35 of his paintings to raise money for us. Here, he talks about leaving a legacy to Epilepsy Society in his will.

    Sarah's story

    Sarah has left temporal lobe epilepsy. She has decided to opt for surgery. 'All I want is my independence,' she says. 'I want to cook by myself, bath by myself and look after my two daughters without having to ask for help.'

    Leann's Story

    When Leann Robb had her first seizure at the age of 24, her family's lives were turned upside down. 'It literally hit us like a bolt out of the blue,' says mum, Joanne Robb. 'We had not had any experience of epilepsy, we knew nothing about it. My husband Kenny and I were in a dark tunnel with no light at the end.'

    Duncan's story

    Duncan Weston is 62. He has lived with epilepsy for 50 years. He doesn't trust himself to take cash out of a high street bank machine as he knows he is likely to have a seizure mid-transaction and walk away leaving his card and his money in the machine.

    Laura's story

    Laura Grainger, 34, cannot remember her own wedding day, most holidays and birthdays, or the time she spent at university. The impact of her epilepsy means that memory loss is a huge factor in her life.

    Hazel's story

    Just six weeks before her 18th birthday, Hazel Cooper was found dead by her mother. Julie describes what it was like finding out that her daughter, Hazel, had died suddenly from epilepsy.

    Georgina's story

    My name is Georgina, I live in London and was diagnosed with epilepsy when I was 12 years old. I’ve worked in the film industry as a script supervisor for the past 6 years and love every minute of it.

    The Howard's story

    When one child in a family has epilepsy it can have an impact on siblings too. Comedy king Russell Howard tells Nicola Swanborough how his brother’s seizures have helped shape his wicked sense of humour, while over the page, two sisters tell their moving story.

    Debbie's story

    Debbie Jackson is currently feeling positive about her epilepsy. She is a personal assistant at a media company in Canary Wharf and feels supported by her boss and colleagues. People have been very good in understanding her condition when she has had a few seizures at work, but this has not always been the case.

    Stuart's story

    Stuart Watson, 39 from Howden in East Yorkshire, was so inspired by the support he received from our helpline that he decided to do a trek of the Great Glen Way in the Scottish Highlands and raise over £2500 for us.

    Queen Elizabeth House

    Our specialist nursing care for adults with epilepsy is provided in Queen Elizabeth House at our Chalfont Centre in Buckinghamshire. In addition to their epilepsy, residents often have associated and additional complications, including physical and learning disabilities, brain injury and autism.

    Queen Elizabeth House

    Our specialist nursing care for adults with epilepsy is provided in Queen Elizabeth House at our Chalfont Centre in Buckinghamshire. In addition to their epilepsy, residents often have associated and additional complications, including physical and learning disabilities, brain injury and autism.

    Niall's story

    Niall Moore, aged 36, will celebrate graduating today (Friday 31 July) with a Doctorate in Childhood Studies (DChild) from the School of Social Sciences, Education and Social Work at Queen’s University Belfast.

    URGENT APPEAL

    Jasmine is working on the front line in the fight against Covid-19. The last six months have been difficult for everybody, especially for people living with epilepsy who have faced increased fear and anxiety.

    Your support today is so important.

    In these challenging times, charities rely on donations to ensure vital services for our beneficiaries can continue.  If you can spare a donation or pledge a monthly gift, you will be helping to ensure we continue to support everyone affected by epilepsy. 

    Muir's story

    Muir Maxwell has had severe epilepsy since he was a baby and, at 23, is unaware of how his experiences have changed the lives of many children like him. But here, his mum, Ann, explains how a Trust, inspired by Muir, has funded vital epilepsy services and still, today, makes possible some of our groundbreaking genomic research at the Epilepsy Society.

    Risk assessment

    You can ask your local social services for a 'needs assessment', which looks at your safety at home. Needs assessments are often carried out by an occupational therapist (OT). They will visit you at home to see what help, support or safety equipment you might need because of your epilepsy.

    Seizure alert dogs

    The organisation Support Dogs trains dogs to support owners with specific needs including epilepsy. Seizure alert dogs are specially trained to warn their owner before a seizure starts, so they can get help or move to somewhere safe.