Diet and nutrition
Eating a healthy, balanced diet is an important part of maintaining good health and can help you feel your best. This may reduce the risk of seizures for some people with epilepsy.

How does diet affect epilepsy?
Although there is little evidence that your diet has a direct effect on seizures, a balanced diet provides essential nutrients and keeps our energy levels steady, helping us to stay healthy. This may help reduce the risk of seizures for some people with epilepsy. A balanced diet may also help you to keep a regular sleep pattern and keep active, both of which are good for overall health. Getting enough sleep may help to reduce the risk of seizures for some people. A diet that suits you may help you to feel positive, more able to focus and more in control of your life and decisions about managing your epilepsy.

What is a balanced diet?
A balanced diet is generally made up of carbohydrates, fats, proteins, vegetables, and fruit, and drinking plenty of fluids. Research continues into what makes a healthy diet, but the NHS advise that, for the general population, people should try to:

Eat at least 5 portions of fruits and vegetables every day;
Base meals on potatoes, bread, rice, pasta, or other starchy carbohydrates;
Eat some beans, pulses, fish (including one portion of oily fish a week), eggs, meat and other protein foods;
Have some dairy or dairy alternatives (such as soya drinks or yoghurts);
Choose unsaturated oils and spreads, and eat in small amounts;
Eat foods high in fat, salt, and sugar less often and in small amounts; and
Drink plenty of fluids – the government recommends 6 to 8 glasses a day.
There is also NHS information for those who follow a vegetarian or vegan diet.

Knowing what we eat
Media reports and recommendations about what to eat can be confusing or contradictory. Also it can be hard to know what our food contains.

‘Traffic light’ labelling on supermarket food is one way to help you see what is in food. This uses red, amber and green labels for high to low levels of our recommended daily amount of calories, sugar, fats and salt. Seeing at a glance the foods with more green labels than red can help you make your own choices about following a balanced diet.

The NHS publishes The Eatwell Guide which shows how much of what we eat overall should come from each food group to achieve a healthy, balanced diet.

Preparing food
Making your own meals gives you more control over what you are eating. If you have seizures, some things may help make cooking safer. These include:

using a kettle tipper, and wire baskets inside saucepans, to avoid lifting containers of hot water;
using hob rings at the back of the hob, and turning pan handles to the side; and
using a microwave rather than an oven.
Vitamin and mineral supplements
Vitamins and minerals are nutrients your body needs in small amounts to work properly and stay healthy. For most people, a varied, healthy diet will provide most of the vitamins and minerals they need, and taking unnecessary supplements can be harmful.

However, government advice is that children over four years old and adults (including pregnant and breastfeeding women) should consider taking a daily vitamin D supplement during the autumn and winter.

Vitamin D helps regulate the amount of calcium and phosphate in the body and helps the immune system. These nutrients are needed to keep the bones, teeth, and muscles healthy.

Sunlight is the main source of vitamin D, and most people should be able to make all the Vitamin D they need from sunlight until about late March/early April. Vitamin D is also found in a small number of foods including egg yolks, red meat, liver, oily fish such as salmon, sardines, herring, and mackerel, and fortified foods such as some breakfast cereals and some fat spreads.

Some anti-seizure medications (ASMs) can reduce bone density, making bones weaker and more likely to break. To help prevent this, doctors may suggest a bone density scan, and prescribe vitamin D. You can ask your doctor for more information about osteoporosis.

Pregnant, planning a pregnancy, or breastfeeding?
Women who are pregnant or planning a pregnancy need to avoid taking too much vitamin A, (found in liver and fish oil supplements like cod liver oil), as large amounts of vitamin A can harm an unborn baby. Your midwife or GP can give you more information about this.

The Department of Health recommends that pregnant or breastfeeding women take a daily supplement of vitamin D.

All pregnant women or those planning to get pregnant, are advised to take a daily supplement of folic acid (a type of vitamin B). For women with epilepsy, a higher dose of 5mg daily is recommended, as soon as they start trying for a baby and for at least the first 12 weeks of pregnancy and for the whole pregnancy, if their doctor feels this is necessary.

This strength of folic acid is only available on prescription but it will be free of charge.

See NHS Choices information on vitamins and pregnancy.

Can any special diets help prevent seizures?
Dietary treatments can help some people with poorly controlled seizures by using specific levels of fat, carbohydrate and protein to affect how the brain works.

The ketogenic diet is a medical treatment carried out under the supervision of a dietitian and an epilepsy specialist. It is a diet that should not be started unsupervised. At present the ketogenic diet is mostly used with children whose epilepsy is not responding to ASMs. However, adults may also benefit from dietary treatments.

Can any foods trigger seizures?
There is currently no evidence that any type of food consistently triggers (sets off) seizures in people with epilepsy (except for rare types of ‘reflex epilepsy’ where seizures are triggered by eating very specific foods).

Although there are some common triggers for seizures, such as lack of sleep, stress and alcohol, everyone’s epilepsy is different. Some people feel that some colourings and preservatives, such as monosodium glutamate (MSG) or artificial sweeteners can trigger their seizures, but there is no high quality evidence that this is the case in humans. Many foods labelled ‘low-fat’ contain these artificial ingredients.

Grapefruit juice and pomegranate juice do not trigger seizures, but they can make the side effects of some epilepsy medications more likely, including carbamazepine, diazepam and midazolam. The patient information leaflet for your medication will say whether you need to avoid drinking these juices. Patient information about different medications is also available at emc Medicine Guides.

Caffeine, found in coffee, tea, cola and some energy drinks has a stimulating effect on the central nervous system (CNS). The relationship between caffeine, seizure control and anti-seizure medication is complex and not fully understood. However, some reports suggest that caffeine may increase the likelihood of seizures happening for some people. Caffeine may also affect how well ASMs work in controlling seizures.

In some cases it appears that caffeine can protect against seizures. You may want to speak to your specialist if you have any concerns about the effect caffeine may have on your seizure control. Read more about caffeine and seizures.

Information produced: February 2023
Source Epilepsy Society

School, education and epilepsy
A guide for parents on managing seizures at school and special educational needs or disabilities (SEND).

Epilepsy is a very individual condition so how it affects a child’s education can vary. Knowing as much as possible about your child’s epilepsy can help you to make decisions with them about their education.

Seizures at school
Telling staff at school about your child’s epilepsy means they will know what to do if a seizure happens. It is important that the staff are aware of what is best for your child, so they don’t assume that epilepsy affects everyone in the same way.

For some children, having epilepsy will not affect their ability to learn or achieve academically but others may need extra time or support in class. For example, a child who has absence seizures may miss key points during lessons. Having a chance to catch up on what they have missed in class can be helpful if seizures happen frequently. Sometimes a child may need time to recover after a seizure, and may need to sleep. Seizures at night can disrupt sleep patterns and affect memory for some time afterwards. Anti-epileptic drugs (AEDs) can also cause side effects that include tiredness and problems with memory or concentration.

If you feel that your child needs support at school you can talk to their teachers. Sometimes a teacher may approach you if they notice areas where your child needs extra help.

Special educational needs or disabilities
A child has special educational needs (SEN) if they have learning difficulties or disabilities that make it harder for them to learn than other children of the same age. Every school has a special educational needs co-ordinator (SENCO) who can look at your child’s needs with you and with people who work with your child, such as their teacher. The school will usually provide SEN support.

If your child needs extra help, you, or your child’s school, can ask the local authority for an Education, Health and Care (EHC) needs assessment. The assessment incluydes talking to you and your child about what support you think your child needs. It will also include asking for information and views from people who work with your child, such as teachers, doctors or educational psychologists. This may produce an EHC plan, a document that brings together your child’s education, health and social care needs. Your child must have special educational needs to be eligible for a plan.

The Information Advice and Support Services Network (IASSN) is funded by the Department for Education (DfE) and gives information, advice and support to parents and carers of children and young people with special educational needs. They also provide information on how individual needs are identified by schools and the local authority.

More information on education and special needs from GOV.UK

Educational support and other organisations

Advisory Centre for Education – an independent advice centre for parents.
Contact a Family – support and information for families of children with disabilities or medical conditions.
Equality and Human Rights Commission – an independent body, which aims to eliminate discrimination against people with disabilities and promote equality. Has information on education and the Equality Act.
IPSEA (Independent Parental Special Education Advice) – free independent educational advice for parents of children in England and Wales.
Staying Positive Programme – free courses for young people with any long-term health condition.

Source Epilepsy Society

Epilepsy Society is grateful to Christine Bennett, Senior Children’s Epilepsy Nurse, for her guidance on this information.

Information updated: May 2021

Information to help teachers who have a child with epilepsy in their class. Find out about adjustments you may need to make, how their epilepsy might affect their learning and what you may need to do if they have a seizure.

Because epilepsy varies so much from person to person, it can be helpful to find out as much as possible about a child’s epilepsy to avoid making assumptions about how their condition might affect their learning.

If parents feel supported by the school, they may be more likely to give information about their child’s epilepsy.

Equality Act 2010
The Equality Act aims to protect people against discrimination. Epilepsy is a condition that is covered by the Equality Act, even if a person’s seizures are controlled with medication.

This means it is against the law for education and training providers to discriminate against people with epilepsy. This includes nurseries and playgroups, primary and secondary schools, and further and higher education.

The Equality Act covers extra curricular activities. It also covers how the curriculum is delivered and so methods of teaching need to treat all pupils fairly and not put any pupils with epilepsy at a disadvantage. However, the Equality Act does not cover the content of the curriculum.

Computers and lights
For most people with epilepsy, using a computer will not trigger a seizure. Up to 5% of children and young people with epilepsy have photosensitive epilepsy, where seizures are triggered by flashing or flickering lights or by geometric patterns such as checks or stripes.

Computers and TVs with a flat screen do not flicker and so are less likely to trigger seizures than screens that flicker. However, fast-moving or flashing images on the screen could be a trigger. Other photosensitive triggers include flickering overhead lights and sunlight creating patterns through blinds.

Exams and tests
Whether a child’s epilepsy affects their ability to do exams or tests depends on their individual epilepsy. If they are likely to have seizures in stressful situations or at certain times of the day, this may affect their performance in exams or tests. Tiredness, or memory or concentration problems may also affect exams. Discussing concerns with the child and their parents may help to decide whether they need any special arrangements for exams.

Practical activities and lessons
Safety is important for all children, especially during practical activities and lessons, such as science or PE. Epilepsy does not need to stop a child from doing an activity, as long as they are safe. Those responsible for their care need to know how their epilepsy affects them, what to do if a seizure happens and when to call an ambulance. This also applies to extra curricular activities.

If a child has seizures, you can discuss any concerns about activities with them and their parents. Doing a risk assessment is also important. Useful questions to ask include the following.

What are the risks to safety for any child involved in this activity?
What happens to the child during their seizures?
Do they have a warning (know that a seizure is going to happen)?
What would help make the activity safer for them?
Swimming
It is essential that the swimming teacher and lifeguards fully understand a child’s epilepsy so they can quickly see if the child is having a seizure in the water.

Some schools use a ‘buddy system’ which pairs up pupils so that everyone has someone to look out for them in the water. This may help a child feel they are being treated the same as the other children, as well as increasing everyone’s safety in the water.

See more about water sports and epilepsy.

Medication at school
Most children with epilepsy take anti-epileptic drugs (AEDs) to prevent seizures. AEDs are usually taken once a day, or twice a day with a 12 hour interval, which usually means this happens outside school hours.

If a child needs to take AEDs at school, having their own health care plan means that their medication can be managed and given effectively. This plan needs to be arranged by the school and agreed with the school’s governing body and the child’s family.

Sample health care plans and other forms relating to giving medication at school can be downloaded for free as part of the Department for Education (DfE) guidance on ‘Supporting pupils at school with medical conditions’ (September 2014).

Status epilepticus or ‘status’
If a seizure continues for more than five minutes and this is not usual, (or one seizure follows another with no recovery in between), this is known as status epilepticus or ‘status’. Status during a tonic clonic (convulsive) seizure is a medical emergency and needs urgent treatment.

Children who have gone into status before may be prescribed emergency medication to help stop prolonged or repeated seizures. There are two emergency medications used to treat status. Both these drugs are sedatives, which have a calming effect on the brain. Although it is rare, they can cause breathing difficulties so a child must be closely watched until they have fully recovered.

Buccal midazolam – given into the buccal cavity (side of the mouth between the cheek and gum).
Rectal diazepam – given rectally (into the bottom)
If a child has emergency medication there should be a care plan (protocol) in place for giving them emergency medication at school.

Anyone giving these drugs needs specialist training to learn how to do this. Training may be arranged by the local authority or the child’s medical professionals.

How will other pupils feel about epilepsy?
Generally, people feel more confident about epilepsy when they understand it and know what to do if someone has a seizure. Learning about epilepsy in the classroom can be good way to introduce information about the condition, without any children with epilepsy feeling that they are singled out.

Epilepsy Society is grateful to Christine Bennett, Senior Children’s Epilepsy Nurse, for her guidance on this information.

Information updated in May 2021

Source Epilepsy Society

Third of women unaware of meds risk to unborn babies
A third of women taking some of the most commonly prescribed anti-seizure medications are unaware of the risks they pose to unborn babies, according to a new survey.

The results of the Epilepsy Medication in Pregnancy Survey, published today, show that 33 per cent of women taking anti-seizure medication did not know of the increased risk of physical birth abnormalities when taken in pregnancy. This figure rises to over half of women under 24. Medications covered in the survey include topiramate, carbamazepine, phenobarbital, phenytoin and pregabalin.

IMPORTANT: No woman should stop taking her epilepsy medication without consulting her doctor. If you are worried about your medication, please speak to your GP, neurologist or epilepsy specialist nurse.

33 per cent

These figures demonstrate the importance of Epilepsy Society’s Safe Mum, Safe Baby campaign which seeks to raise awareness around the risks posed by these medications when taken during pregnancy.

Safe Mum, Safe Baby is calling on the Government and private sector to fund vital research into safer epilepsy treatments during pregnancy, so women no longer have to make the impossible choice between taking their life-saving drugs and the health of their baby. As part of this campaign, we have presented a petition to the Patient Safety Commissioner, Dr Henrietta Hughes, and have been backed by a number of leading MPs.

Commenting on the results, Nicola Swanborough, Head of External Affairs at the Epilepsy Society, said: “It is extremely concerning that, two years after the Commission on Human Medicine’s landmark report, there is still such lack of awareness about the risks to unborn babies associated with many epilepsy medicines. Knowledge is power. It is clear that there is insufficient knowledge among women with epilepsy about these risks.”

“And even when women are aware, they often have to make an impossible choice between their life-saving medication and the health of their baby. This is devastating, but the solution is simple: more research. Our Safe Mum, Safe Baby research project has the answer. By studying the genes of father, mother and child, scientists have the expertise to determine the most effective, personalised treatments. The science exists; what is needed is investment. With the right funding, we believe that future generations will not have to face the heart-breaking choices highlighted in this survey.”

The survey also found that almost a third – 31 per cent – of women have never spoken with a healthcare professional about the risks of taking anti-seizure medication while pregnant. Again, this figure was higher for women under 24, at 39 per cent.

And, even when information was available, over a third (36 per cent) were not satisfied with the information they had received from healthcare professionals.

36 per cent

However, the survey did indicate that women are increasingly aware of the risks of taking sodium valproate during pregnancy. Only 9 per cent of respondents were unaware of the risks associated with valproate, compared with 18 per cent in a previous 2017 survey, and 17 per cent in 2019.

The Epilepsy Medication in Pregnancy Survey was conducted in November 2022 by Epilepsy Action, Epilepsy Society and Young Epilepsy.

This follows a 2021 Commission on Human Medicines report which showed that a number of epilepsy medicines were linked with an increased risk of birth abnormalities if taken during pregnancy, including carbamazepine, phenobarbital, phenytoin and topiramate.

Source Epilepsy Society

Government rolls out emergency alerts
The Government is to roll out a new emergency alerts message system for mobile phones. We have been assured there will be no flashing images included with these alerts.

The UK’s new Emergency Alerts system is now live, and you should expect to receive a test message on 23 April. The system will enable people to be contacted via their mobile phone when lives are in danger.

** The Government have assured the Epilepsy Society that none of these alerts will include flashing images.**
It will be used to warn you in the event of emergencies, such as severe flooding.

Emergency Alerts are sent to all compatible mobile phones within an area of risk. They don’t track your location, need your phone number, or collect personal data. Only the Government and the emergency services will be able to send them. If you don’t have a mobile phone, you’ll still be kept informed through other channels.

If you get an Emergency Alert on your phone, you’ll hear a loud, siren-like sound. A message on your screen will tell you about the emergency and how best to respond. You’ll be able to check an alert is genuine at gov.uk/alerts

If you receive an alert, read the alert carefully and follow the instructions.

You can opt out of receiving emergency alerts; for more information on how to opt out please go to gov.uk/alerts

Source Epilepsy Society

prescriptions
You can get free NHS prescriptions if, at the time the prescription is dispensed, you:

are 60 or over
are under 16
are 16 to 18 and in full-time education
are pregnant or have had a baby in the previous 12 months and have a valid maternity exemption certificate.
have a specified medical condition and have a valid medical exemption certificate.
have a continuing physical disability that prevents you going out without help from another person and have a valid medical exemption certificate.

hold a valid war pension exemption certificate and the prescription is for your accepted disability
are an NHS inpatient
You’re also entitled to free prescriptions if you or your partner (including civil partner) receive, or you’re under the age of 20 and the dependant of someone receiving:

Income Support
income-based Jobseeker’s Allowance
income-related Employment and Support Allowance
Pension Credit Guarantee Credit
Universal Credit and meet the criteria
If you’re entitled to or named on:

a valid NHS tax credit exemption certificate – if you do not have a certificate, you can show your award notice. You qualify if you get Child Tax Credits, Working Tax Credits with a disability element (or both), and have income for tax credit purposes of £15,276 or less
a valid NHS certificate for full help with health costs (HC2)
People named on an NHS certificate for partial help with health costs (HC3) may also get help.

Read more about who can get free NHS prescriptions.

Check you’re eligible for free prescriptions
There’s a simple way to find out if you’re eligible for free NHS prescriptions and any help with other NHS costs.

Free prescriptions for certain medical conditions
People with certain medical conditions can get free NHS prescriptions.

Medical exemption certificates are credit-card-size cards. They are issued if you have:

cancer, including the effects of cancer or the effects of current or previous cancer treatment
a permanent fistula (for example, a laryngostomy, colostomy, ileostomy or some renal dialysis fistulas) requiring continuous surgical dressing or an appliance
a form of hypoadrenalism (for example, Addison’s disease) for which specific substitution therapy is essential
diabetes insipidus or other forms of hypopituitarism
diabetes mellitus, except where treatment is by diet alone
hypoparathyroidism
myasthenia gravis
myxoedema (hypothyroidism requiring thyroid hormone replacement)
epilepsy requiring continuous anticonvulsive therapy
a continuing physical disability that means you cannot go out without the help of another person (temporary disabilities do not count, even if they last for several months)

Find out more about medical exemption certificates.

How to apply for a medical exemption certificate
Ask your doctor for an FP92A form to apply for a medical exemption certificate.

Your GP will sign the form to confirm that your statement is correct. At your GP’s discretion, a member of the practice who has access to your medical records can also sign the form.

Your certificate will be valid from 1 month before the date the NHS Business Services Authority receives the application form.

The MedEx lasts for 5 years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed.

If you do not receive a reminder, it’s your responsibility to make sure it’s renewed.
Check if your exemption certificate is valid

How to apply for a medical exemption certificate
Ask your doctor for an FP92A form to apply for a medical exemption certificate.

Your GP will sign the form to confirm that your statement is correct. At your GP’s discretion, a member of the practice who has access to your medical records can also sign the form.

Your certificate will be valid from 1 month before the date the NHS Business Services Authority receives the application form.
The MedEx lasts for 5 years and then needs to be renewed. You may receive a reminder that your certificate needs to be renewed.
If you do not receive a reminder, it’s your responsibility to make sure it’s renewed.

Free prescriptions for pregnant women
If you’re pregnant or have had a baby in the past 12 months, you get free prescriptions if you have a valid maternity exemption certificate.

To apply for a maternity exemption certificate, contact your doctor, midwife or health visitor.

Your certificate will be sent to you by email or in the post.
The certificate will last until 12 months after the expected date of birth of your baby.
If your baby’s born early, you can continue to use your certificate until it expires.
If your baby is born late, you can apply for an extension.
If you apply after your baby is born, your certificate will last for 12 months from your baby’s birth.
Free prescriptions if you have a low income.
If you have a low income, you may be eligible to receive financial help through the NHS Low Income Scheme.

To apply for an HC2 certificate, complete form HC1, which is available from Jobcentre Plus offices or most NHS hospitals. You might also be able to get an HC1 form from your doctor, dentist or optician.

You can also get an HC1 form by calling 0300 123 0849.

You qualify for a full help HC2 certificate (which includes free NHS prescriptions) if your income is less than or equal to your requirements, or your income is greater than your requirements by no more than half the current English prescription charge.

You qualify for a limited help HC3 certificate if your income is greater than your requirements by more than half the current English prescription charge.

The HC3 certificate shows how much you have to pay towards your health costs.

Certificates are usually valid for between 6 months and 5 years, depending on your circumstances.

Find out more about the NHS Low Income Scheme and all the other ways to get free prescriptions by going to www.nhs.uk

You do not need to apply. You’ll be paid automatically.

If you have had a message asking you to apply or contact someone about the payment, this might be a scam.

You could get up to 3 different types of payment depending on your circumstances on a particular date or during a particular period:

The main cost of living payment, worth £650 in total, for those on income-related benefits and tax credits.

The disability payment, worth £150, for those on non-means-tested disability benefits.

The pensioner payment, worth £300, for everyone who receives the winter fuel payment.

For more in depth information go to Cost of living payments gov.uk

Epilepsy treatment and care
This information is for carers of people with epilepsy and a learning disability

Epilepsy medicines
For most people epilepsy medicine is the best and often only option for controlling seizures. For many people, being on the right dose of the right epilepsy medicine or medicines can mean their seizures stop completely.

It can be difficult or upsetting for some people with a learning disability to swallow tablets. There are usually a variety of forms of the medicines, such as liquids and granules, available. So it’s worth getting the one that is most manageable to help the person take their medicine exactly as prescribed.

For someone who is likely to have trouble remembering to take their epilepsy medicine, there are a variety of reminder devices available. For more information on medicine reminders see the Disabled Living Foundation website.

Website: livingmadeeasy.org.uk

There are small differences between versions of epilepsy medicine which can affect the way the medicine works. If you notice a change in seizures following a version change it is important to tell your doctor or pharmacist. Some people may need to stay on the same version of their epilepsy medicine.

For everyone with epilepsy the aim is to get the best possible seizure control with as few side-effects as possible. For a person with a learning disability it’s especially important that seizure control isn’t the only thing the doctor considers when prescribing epilepsy medicine. They should be helping the person reach the best quality of life possible for them.

Possible seizure triggers
Knowing the possible seizure triggers for the person you look after, can help to limit the number of seizures they have. It can also mean that the dose of their epilepsy medicine isn’t increased unnecessarily. These are the things people say trigger seizures:

Not taking epilepsy medicine as prescribed
Feeling tired
Not getting enough sleep
Stress
Alcohol
Flashing or flickering lights
Menstruation (periods)
Missing meals
Fever can also make it more likely that someone will have a seizure.

Changes in any other medicines they take, especially stopping sedating medicines, can also trigger seizures.

Side-effects of epilepsy medicine
As a carer you are likely to notice changes in emotional and physical health and behaviour of the person you are looking after. This information may help with what to look out for. And what you notice will be important to share with the doctor.

A person with a severe learning disability is more likely to have side-effects than someone with a milder learning disability
Small side-effects may be missed by a doctor who doesn’t know the person you look after very well. They may think that a problem the person has with understanding, co-ordination or behaviour may be because of the learning disability, when it could be a side-effect of an epilepsy medicine
People with epilepsy and a learning disability may well have side-effects that are different from the general population
Side-effects could explain someone’s reluctance to take epilepsy medicine
Side-effects could result in behaviour problems
Having too much of an epilepsy medicine could result in behaviour problems
Taking a number of epilepsy medicines can often result in significant side-effects
Side-effects could reduce the person’s ability to understand things
A number of the older epilepsy medicines can cause osteoporosis. If the person you care for is taking one of the older medicines you may want to ask the GP to give them a bone density test. If necessary the doctor may then give a particular medicine or supplement for the condition.

Epilepsy Action has more information about osteoporosis.

Interactions
Always check with the doctor or pharmacist before giving someone over-the-counter medicines. Some epilepsy medicines will interact with these as well as prescribed medicines.

Other ways of treating epilepsy
For some people who are still having seizures despite trying a number of epilepsy medicines, epilepsy surgery may be an option. The assessment for surgery is complex but it should be offered where it is believed epilepsy is coming from one part of the brain. Even so, not everyone will be suitable for surgery. However when a person with a learning disability is suitable for surgery the results can be very good.

If surgery isn’t a treatment option, the doctor may discuss the possibility of vagus nerve stimulation (VNS) or the ketogenic diet.

VNS is a treatment for epilepsy where a small device is implanted under the skin below the left collar bone. This device, similar to a pace-maker, is called a generator. The generator is connected to a thin wire, which stimulates the vagus nerve in the person’s neck at regular times throughout the day. This sends impulses to the brain, which helps to prevent electrical activity that causes seizures.

There are 2 modified ketogenic diets. These are the Modified Atkins diet (MAD) and the low glycemic index treatment (LGIT) diet. The MAD involves restricting carbohydrates and encouraging fat. Protein is not restricted. On the LGIT diet carbohydrates and protein are both restricted and fat is encouraged.

These 2 modified diets are less strict than the ketogenic diet and weighing of food is not needed. The MAD is increasingly being chosen for children.

They are sometimes used to try and help people whose seizures cannot be reduced or stopped with epilepsy medicine or other treatments.

Epilepsy Action has more information about epilepsy medicines, surgery, VNS and the ketogenic diet.

Seizure diaries
Keeping a seizure diary is a good way of having a record of someone’s health day by day. It’s also an efficient way of showing a neurologist possible connections between changes in someone’s seizure control, general health, dose changes and side-effects.

Epilepsy Action has seizure diaries.

You might also want to look at Myhealthguide: myhealthguideapp.com

First aid
Epilepsy Action has information on first aid, including what to do if someone is in a wheelchair.

Care plans
Everyone with epilepsy should have a care plan. This is especially important if the person may need emergency treatment for their seizures. The plan should be drawn up by a medical professional, the person the care plan is about and their carers.

Epilepsy Action has care plans. These are not in Easy Read but you could use one alongside an Easy Read healthcare passport.

Website: ekhuft.nhs.uk/patients-and-visitors/about-us/people-with-learning-disabilities/my-healthcare-passport

Emergency treatment for seizures that last a long time
Many people have seizures that last for less than 5 minutes and stop without any treatment. But some people have seizures that last too long. These are known as status epilepticus and need treating urgently. This is to try and stop them before they cause long-term damage. The sooner the seizure is treated the easier it will be to get it to stop.

By the time a seizure is lasting for 30 minutes or more, it is much more difficult to stop. If a tonic-clonic or cluster of tonic-clonic seizures last longer than 30 minutes, this can cause damage to the brain, or even death.

What type of seizures turn into status epilepticus?
Any type of seizure can become status epilepticus.

Tonic-clonic (convulsive) status epilepticus
During a long convulsive tonic-clonic seizure, the body struggles to circulate oxygen. When this happens, the brain doesn’t get enough oxygen. Over a long period, this can lead to brain damage and death.

Non-convulsive status epilepticus
Some people with epilepsy, particularly people with learning disabilities or an epilepsy syndrome, have a different type of status epilepticus. They may just appear to be vacant. Or they might have some minor twitches in their face or rolling of their eyes. These can be symptoms of non-convulsive status epilepticus. The only clues to this will be changes in their brainwave patterns that can be seen on an electroencephalogram (EEG). It’s important that you are aware of this, as it can last for weeks, if not treated. If you think this may be happening for the person you care for, you may want to speak to your consultant who can arrange for them to have an EEG in hospital. If this process would be too slow, you may want to take the person you care for to A and E.

Rectal diazepam and buccal midazolam are both used as an emergency treatment. Buccal midazolam has the advantage of not causing the person concerned embarrassment. The issue of consent to emergency treatment can be a challenging one for the person involved and their carer. The NHS website has some helpful information on definitions of consent and what to do if that is difficult to get.

Website: nhs.uk/conditions/consent-to-treatment

Epilepsy Action has more information on emergency treatment for seizures that last a long time.

In hospital
The NHS website has a range of useful guidance about getting the person you look after the best care and treatment when they are in hospital.

Website: nhs.uk/nhs-services/hospitals/going-into-hospital/

Epilepsy Action would like to thank Dr Lance Watkins Consultant Psychiatrist, Neath Port Talbot Community Learning Disability Team for his contribution to this information.

Source Epilepsy Action

Employment
What’s the issue?
Figures from the Office of National Statistics show that in 2018 just 29.7% (nearly 1 in 3) of people with epilepsy living in the UK were employed. This is not because people with epilepsy are unable to work. There are very few jobs someone with epilepsy cannot do, depending on how their epilepsy affects their daily life. Many people with epilepsy can carry out a job with slight adjustments.

Despite this, there are many people with epilepsy who are unable to find a job. Epilepsy Action asked the Institute of Employment Studies (IES) to research this area. This would help us understand why people with epilepsy are struggling to find jobs. Finding the reasons why people are struggling will also help us to address these issues.

The IES research found that one of the biggest barriers to employment was a lack of understanding of epilepsy. Many employers were unaware that not everyone with epilepsy has tonic-clonic seizures. They also not aware of the different ways that epilepsy can affect different people or that many people’s seizures can be controlled with medication. They also didn’t know that not everyone’s seizures are triggered by flashing lights. Employers also worried about the impact seeing a colleague having a seizure could have on other members of staff.

The government has committed to increasing the number of disabled people in work. The number of disabled people in work has risen by 930,000 (31%) in the last 3 years. The number of disabled people who are out of work, however, remained roughly the same at around 3.7 million. Programmes designed to help disabled people into work are not meeting the current demand. Since 2011-12, DWP spending on employment support for disabled people has fallen in real terms by £50m.

What we are doing
Epilepsy Action has already taken steps to support people with epilepsy looking for work. The charity offers a range of advice and information materials about epilepsy and work. We also regularly train employers about epilepsy and the adjustments that can be made for employees with epilepsy.

Plans for other resources, including online tools to help employers support people with epilepsy in the workplace, are being developed. Epilepsy Action also has the ‘Epilepsy and you’ online self-management tool. This was designed to help people live better with epilepsy and become an expert in their own condition. The IES research stated that self-management tools are a key way people with epilepsy can improve their chances of finding and staying in a job.

There are a number of government programmes aimed at helping disabled people to find a job. However, these do not always work. Together with other charities, we regularly meet with the

Department of Work and Pensions. We highlight problems with the government’s employment support programmes and suggest solutions to improve what they provide.

It is clear, however, that more needs to be done. We will continue working with MPs, charities and others to push the government to provide more support for people with epilepsy to find, and stay in a job.

The research from IES found that people with a higher knowledge of epilepsy had a more positive perception of someone with epilepsy as an employee. Improving knowledge and understanding of the condition should help improve the employment chances of people with epilepsy. We will therefore continue working with employers to improve their understanding of epilepsy, through our awareness training.

How you can be involved
We would be interested to hear from you if have had any problems with your employer, or in finding a job and staying in work, due to epilepsy.

We would also like to hear of your experience of trying to access employment support through government schemes such as Access to Work or Specialist Employability Support.

Please get in touch on 0113 210 8866, or email campaigns@epilepsy.org.uk

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Source Epilepsy Action

Cost-of-living with epilepsy
Employment
Only 42% of working-age people with epilepsy are currently in employment. This is among the lowest employment rates for disabled people in the UK. 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.

Welfare
Many people with epilepsy have struggled to successfully apply for Personal Independence Payments (PIP). The current PIP assessment process is not working for people with epilepsy. The process does not properly assess the impact epilepsy has on an individual’s daily life. The assessment is not able to capture and reflect the nature of epilepsy. Too many people with epilepsy are not successful in their initial assessment for PIP and have to go through the appeals system to get the support they should be entitled to.

And while people on Universal Credit received an extra £20 per week during the pandemic, people on disability benefits such as PIP received no such help. This is despite research showing that extra costs faced by disabled people add up to £583 a month on average.

Cost-of-living
The combination of people with epilepsy struggling to find employment, and the problems they face trying to get sufficient support through the welfare system, means that they are particularly vulnerable to the impact of the cost-of-living crisis.

Inflation is now at 9% and is predicted to hit 10% later in the year, as energy bills rocket and food prices shoot up. This is on top of the extra costs that many disabled people already faced. However, despite this, benefit payments have only increased by 3.1%. Many people were already struggling but these factors will make their situations much worse.

What we are doing
In order to ensure that people with epilepsy aren’t disadvantaged by the cost-of-living crisis we are calling on the government make the following improvements:

Employment
Introduce mandatory disability employment and pay gap reporting for employers, including reporting on the employment gap for specific impairment groups
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
Ensure there is 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
Welfare
Uprate disability benefits and Carer’s Allowance to rise in line with inflation
Increase the length of PIP awards to avoid frequent re-assessments. The DWP should also look to use information provided during previous assessments, which would allow assessors to make a paper-based decision, without the need for repeat assessments
People with epilepsy should be assessed by someone who has a proven understanding of the condition
Reform the activities and descriptors in the PIP assessment and Universal Credit Work Capability Assessment to properly capture the impact of living with a fluctuating and invisible condition like epilepsy
End of the use of informal observations as part of the assessment process
Cost-of-living
Provide targeted support to help disabled people with the rising cost of living
Ensure better access to the Warm Home Discount Scheme which currently excludes around 210,000 people on disability benefits from applying. Currently Disability Living Allowance, Personal Independence Payments and Attendance Allowance claimants will no longer benefit
Introduce social tariffs for disabled people so they pay no more than a supplier’s cheapest plan
Get involved
We are looking for MPs to support our work to ensure that these recommendations are implemented. We would like people to raise this issue with their MP.
Source Epilepsy Action

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