Uk Epilepsy Priority Setting Partnership

In November 2021, Epilepsy Research UK launched the UK Epilepsy Priority Setting Partnership (PSP) in conjunction with the James Lind Alliance and NIHR. This once in a generation national survey is collating the views of the entire UK epilepsy community including people living with the condition, families, friends, carers, those bereaved by epilepsy, healthcare professionals and charity or patient organisation representatives. The priorities we are gathering will enable us collectively to:

Fund research based on evidenced priorities that matter most to people affected by epilepsyDrive collaborations with associated condition charitiesGenerate the evidence needed to influence government and institutional funders to give epilepsy an equitable share of research funding for epilepsy


We need your help

I am getting in touch to ask you to join us in sharing the UK Epilepsy PSP survey with your supporters and membership. By doing so you will enable the survey to build a more complete picture of the priorities of the epilepsy and associated condition community, which will provide more accurate evidence of need to convince funders to invest in research into epilepsy.


To ensure the UK Epilepsy PSP is truly representative, everyone must have their say. We want to hear from people living with and working in epilepsy, including rare epilepsies and associated conditions, and their families and carers. Whilst we have had an excellent response to the survey, we do need to highlight that we have had a limited responses from men, ethnic minorities, people aged 25 and under, and people aged 65 and over.


Our communications team have found the following methods most effective to promote the project:

Our E:bulletins have generated the most responses. Single issue emails, featuring just the PSP and with one survey link, have performed bestRegular social media posting – Facebook has been the most successful mediumOur website news piece about the PSP and linking to the PSP survey page also received good engagement


We have created a ‘UK Epilepsy PSP Launch social media toolkit’ which contains supporting materials and resources to assist you with any publicity, which can be found here.


We are acting now to ensure that innovations in the diagnosis and treatment of epilepsy and associated conditions will no longer lag behind other conditions.  The priorities of your community are an essential component of this programme of work.


Thank you so much for taking the time to consider this request, and please do not hesitate to contact us at






A Quick Christmas note from the Ipswich Epilepsy Support Group

If I’m not just talking to myself depending on the severity of your epilepsy there are benefits out there that suffers of epilepsy may be eligible for so for form filling and any benefit related advice totally free and totally confidential contact the Ipswich Disabled Advice Bureau on 01473 217313 or contact your nearest advice service or Citizen Advice Bureau for addresses and phone numbers please go to the relevant website for more information. Our links tab also has some information. They are there to help you.

Depending on your situation you may also be eligible for Fuel and Food vouchers to find out more about this contact your nearest advice centre.

Don’t forget the group may be able to totally or partially fund aids adaptions and certain white good or respite care for people who suffer from Epilepsy in the Suffolk area subject to Committee approval and funding.

Finally the group would also like to wish everyone a Happy and Safe Christmas and a Happy New Year.

M.A.C.C.Y. D.

Why it’s a MaCCCy D for us

A big thanks to McDonalds for going the extra mile when a customer had a cluster of seizures in one of their branches. Not only did staff treat her with kindness and sensitivity, but the fast food chain also shared our ‘Calm, Cushion, Call’ messaging on their social media.

Brian’s daughter was with a friend in the Leisure Park branch of McDonalds in Stevenage when she had a cluster of seizures.

Brian  afterwards took to Twitter to praise the kind and caring member of staff, Nicola, who supported his daughter saying that she was “really caring” and “sensitive” and took time to make sure his daughter was ok, while other staff covered for her.

McDonalds added their thanks to Nicola and also shared our Calm, Cushion, Call messaging with their 240k followers on Twitter.

A spokesperson for Twitter told the Epilepsy Society: “We were really pleased to share your message with our Twitter followers. It really made my week to work on this.”

McDonalds also shared the 3Cs messaging with their 43,000 crew members via their newsletter, News Bites. 

Nicola Swanborough, Head of External Affairs at the charity said: “It is really good to hear how staff supported Brian’s daughter during a seizure. And we are very grateful to McDonalds for sharing our Calm, Cushion, Call seizure first aid message on their Twitter feed and through their newsletter. This is amazingly powerful in helping members of the public to understand about seizure first aid.”

Our 3Cs campaign ‘Calm, cushion, call’

Source Epilepsy Action


Safe Mum, Safe Baby, Campaign

Epilepsy Society welcomes new registry but calls for expansion
The Epilepsy Society has welcomed the publication of data from a new valproate registry but called for it to be expanded to include all anti-epilepsy drugs.

Last week the first in what has been promised to be a series of reports was released examining valproate use among women between the ages of 0 and 54.

The report includes key data taken from the Medicines in Pregnancy Valproate Registry and provides information on the number of women prescribed valproate from April 2018 to September 2020.

The report provides data for all women taking valpraote, regardless of their specific medical condition.

Data shows that 47,532 women were prescribed valproate during the period of study. Of these, 180 were prescribed valproate while pregnant, including 16 women who were prescribed the drug for the first time. A further 238 women stopped taking valproate prior to becoming pregnant.

The Epilepsy Society has welcomed the registry, which is maintained by the Medicines and Healthcare products Regulatory Agency (MHRA) and NHS Digital, but believes it does not go far enough.

On Tuesday, the Epilepsy Society launched our Safe Mum, Safe Baby campaign which seeks to ensure safer medication for pregnant women with epilepsy. As part of this campaign, we are calling for an immediate expansion of the Medicines in Pregnancy Valproate Registry to include all epilepsy drugs.

A recent report from the Commission on Human Medicines highlighted growing evidence that many epilepsy drugs, not just valproate, can cause physical and neurodevelopmental harm to a baby when taken by pregnant women with epilepsy. Although the risk of such harm is not as high as for valproate, it is nevertheless significant. Drugs highlighted in this report include carbamazepine, topiramate, phenytoin and phenobarbital.

Commenting, Nicola Swanborough, Head of External Affairs for the Epilepsy Society said:

“A registry that captures real-life experiences at grass root level is imperative if we are to understand the potential risks posed by epilepsy medications during pregnancy.

“We very much welcome the development of a valproate registry which is a testament to the families who have fought relentlessly to see this introduced.

“Now we must learn from their experience and ensure that the registry is expanded to include all epilepsy medications. That has to be a critical first step towards the development of safer epilepsy medications that won’t force women to choose between their own safety and that of their babies.”

It is clear that more needs to be done to collect and disseminate accurate data on the use of all anti-epileptic drugs in pregnancy.

While the MHRA have promised that they “plan over time” to include all epilepsy medications in the registry there is currently no clear timeframe for this.

The Epilepsy Society is calling for the registry to be expanded as a matter of urgency to include individual data relating to all anti-epileptic drugs, so that scientists and researchers can identify specific risk factors and develop safer treatment options.

At the Epilepsy Society we work closely with pregnant and postnatal women with epilepsy to ensure they have the best possible access to health guidance. A lack of data about commonly prescribed epilepsy drugs can therefore have serious consequences.

We believe that women need better, safer choices of medication. Through our Safe Mum, Safe Baby campaign we intend to make this a reality.

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Source Epilepsy Action

Some Myths about Epilepsy

Epilepsy myths

Epilepsy is often misunderstood with different facts and myths surrounding the condition despite over 500,000 people in the UK having epilepsy. We want to dispel the many myths that still exist and bring you important information about seizures, seizure triggers and epilepsy first aid.

MYTH 1: You shake and jerk when you have epilepsy

FACT 1: Not every seizure means a person shakes and jerks, nor is a person always unconscious during a seizure. Shaking and jerking while unconscious are usually associated with tonic clonic seizures. There are a range of seizures which have different side effects and can affect people differently. 

MYTH 2: Flashing lights cause seizures in everyone with epilepsy

FACT 2: Around 1 in 100 people has epilepsy, and of these people, around 3% have photosensitive epilepsy. Photosensitive epilepsy is more common in children and young people (up to 5%) and is less commonly diagnosed after the age of 20. Triggers differ from person to person, but common triggers include a lack of sleep, stress, and alcohol. 

MYTH 3: You can restrain someone during a tonic clonic seizure and put your finger in their mouth

FACT 3: During a tonic clonic seizure you should never hold the person down or put anything in their mouth. It’s important to know exactly what to do when someone has a tonic clonic seizure so that you can act quickly. 

MYTH 5: The only side effects of a seizure are tiredness and being confused

FACT 5: Having epilepsy can affect people in different ways. Knowing that a person ‘has epilepsy’ does not tell you very much about what happens for them or how epilepsy affects them. For example, some people may have problems with sleep or memory and for some people epilepsy may affect their mental health. 

Information updated: January 2021
Source Epilepsy Foundation

Epilepsy in Animals

Seizures and epilepsy in pets

It can be very upsetting if your pet unexpectedly has a seizure. The best thing to do for your pet is to stay calm. Try and remember our helpful seizure management tips below and then get help from a vet straight away.What are seizures?

Seizures are more commonly called ‘fits’. They happen when usual electrical activity in your pet’s braqin causes them to lose control of their muscles. 

A fit, which can look like a twitch or uncontrollable shaking, can last for a few seconds or for several minutes. Your pet might have one seizure in their lifetime or they could have a condition called epilepsy, which can cause frequent fits if your pet doesn’t get treatment.  

The signs your pet is having a fit

If your pet is about to have a fit, you might notice them behaving oddly. Some animals may look dazed or stare off into the distance before a seizure. They can seem confused or nervous. If your pet has regular fits you might learn to notice these signs so you can tell when a fit is coming.

Although seizures aren’t immediately life-threatening, your pet may lose control of their body, which can be frightening.

Here are some things that usually happen if your pet has a fit:

Fierce trembling or jerking.Glazed eyes.They may dribble.Their jaw could be clamped shut.They might wee or poo during the fit.They might stop reacting to your voice or touch.

What to do if your pet has a fit

It can be very scary if your pet is having a seizure, especially for the first time. The best thing you can do is keep calm and follow our first aid advice.


Call your vet straight away for advice. They might not tell you to bring your pet in right away – it depends on how long the fit lasted and any other symptoms that came with it. Their fit may have been caused by an underlying illness which you don’t know about. The fits could get worse with time and, if they aren’t treated, your pet’s life could be in danger so getting advice from a vet on this is essential.

If your pet has had a seizure which lasts over five minutes or has more than one seizure in a day, it’s important to get them seen by a vet immediately.

Helping your pet recover

Your pet will probably be very dazed and confused after they’ve had a fit. Give them somewhere calm and comfortable to recover. Your vet can offer more advice about how to help your pet recover. Try speaking softly and gently to your pet. This might help them keep calm, especially as they come round after their fit.

What causes pets to have fits?

There are many reasons your pet might have a fit. Sometimes it’s a one-off episode, but a seizure can also be a sign of a more serious underlying condition.

Common causes are:

Pets suffering from epilepsy can have regular fits and sometimes need medication to keep them under control.If your pet has an untreated illness – such as kidney disease or diabetes – they might have fits.Head trauma. If your pet has fallen over or knocked their head on something, they could have a fit.Heat stroke. Overheating is very serious for pets and could cause them to have a seizure. You can find out more about the signs and symptoms of heatstroke here.Some poisons can affect your pet’s brain and cause them to have a fit. If you’ve noticed them eating or drinking anything them shouldn’t, speak to your vet immediately. You can find out more about common poisons and hazards here.

What is epilepsy?

Epilepsy is a condition that can cause regular fits. Seizures might be triggered by something in the pet’s environment, like bright lights or loud noises, or even high levels of excitement or stress.

There’s no cure for epilepsy and we’re still not sure what causes some pets to have it and not others. The good news is that epilepsy can usually be managed with medication and regular check-ups. Most epileptic pets go on to live very happy and normal lives, so long as their owner works with their vet to keep on top of the condition.

Epilepsy can happen in any pet, but dogs are more likely to suffer from it. They usually start to show signs of epilepsy at around 2-3 years old, although it can develop at any age. Certain breeds are more likely to develop it than others, including:

Irish SettersGolden RetrieversDachshundsPoodlesGerman Shepherds.
Source PDSA


What’s Epilepsy?

Epilepsy is a chronic disorder, the hallmark of which is recurrent, unprovoked seizures. A person is diagnosed with epilepsy if they have two unprovoked seizures (or one unprovoked seizure with the likelihood of more) that were not caused by some known and reversible medical condition like alcohol withdrawal or extremely low blood sugar.

The seizures in epilepsy may be related to a brain injury or a family tendency, but often the cause is completely unknown. The word “epilepsy” does not indicate anything about the cause of the person’s seizures or their severity.

Many people with epilepsy have more than one type of seizure and may have other symptoms of neurological problems as well. Sometimes EEG (electroencephalogram) testing, clinical history, family history, and outlook are similar among a group of people with epilepsy. In these situations, their condition can be defined as a specific epilepsy syndrome.

Essentially, anything the brain can do, it can do in the form of a seizure.

Although the symptoms of a seizure may affect any part of the body, the electrical events that produce the symptoms occur in the brain. The location of that event, how it spreads, how much of the brain is affected, and how long it lasts all have profound effects. These factors determine the character of a seizure and its impact on the individual.

Having seizures and epilepsy can affect one’s safety, relationships, work, driving, and so much more. Public perception and treatment of people with epilepsy are often bigger
Source Epilepsy Foundation

The Flue Jab and Epilepsy

What about the flu jab?

The JCVI has said that the Covid-19 vaccine booster and the flu jab can be given at the same time. However, people with epilepsy are not automatically entitled to the flu jab. This is at the discretion of your GP.

The NHS has published a list of serious long-term health conditions which qualify for the free flu vaccine. However, it stresses the following:

“Talk to your doctor if you have a long-term condition that is not in one of these groups. They should offer you the flu vaccine if they think you’re at risk of serious problems if you get flu.”

This means that anyone with epilepsy is entitled to request a free flu vaccine from their GP, even though they are not in the defined risk group.
Sour Epilepsy Action

People with epilepsy included in priority group 6 for Covid vaccine

Epilepsy Action have spoken directly with the Department of Health and Social Care (DHSC) who have assured us that epilepsy is included in priority group 6 as defined by the Joint Committee on Vaccinations and Immunisations.

The main risk groups identified by the Committee are as follow

Chronic respiratory disease, including chronic obstructive
pulmonary disease (COPD), cystic fibrosis and severe asthma
Chronic heart disease (and vascular disease)
Chronic kidney disease
Chronic liver disease
Chronic neurological disease including epilepsy
Down’s syndrome
Severe and profound learning disability
Solid organ, bone marrow and stem cell transplant recipients
People with specific cancers
Immunosuppression due to disease or treatment
Asplenia and splenic dysfunction
Morbid obesity
Severe mental illness.
Other groups at higher risk, including those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill, should also be offered vaccination alongside these
Source Epilepsy Action

TikTok to introduce features that filters photosensitive Videos

Epilepsy Society welcomes the news that TikTok is introducing a new feature that filters photosensitive videos. This is a significant step in helping to safeguard users with epilepsy.

The platform’s new feature will allow users to filter content that falls within the photosensitive range and remove it from their TikTok feed. Potentially photosensitive content will carry a warning and will give users the option to filter all future photosensitive videos. The feature is scheduled to be launched in January 2021.

TikTok is a video sharing platform with 3.7 million daily active users in the UK alone. This equates to approximately 1100 people with photosensitive epilepsy in the UK using the platform. With 800 million active users worldwide, approximately 240,000 people with photosensitive epilepsy will be using the platform.

Epilepsy Society raised concerns with TikTok around harmful content on the platform after being alerted by the charity’s supporters to strobe video filters and “seizure challenge” trends. The charity hopes this will encourage other social media platforms to introduce robust software to safeguard users with epilepsy from online harm.

Nicola Swanborough, Acting Head of External Affairs at the Epilepsy Society has said: “It is extremely encouraging to see a platform with such a significant following as TikTok introducing algorithms to detect photosensitive content and protect people with epilepsy. We hope that the platform’s new feature will turn up the heat on other big players in the industry to take the safeguarding of its users with epilepsy seriously.

“TikTok’s move has demonstrated that where there is a will to do so, technology can be developed at speed to protect people from physical and emotional harm. Our message to the other social media companies is clear; if TikTok can do it, so can you!”

Support our #ZachsLaw campaign
Source Epilepsy Action