Epilepsy

The condition

Epilepsy is a group of conditions that have epileptic seizures as a symptom. Although the correct term is 'the epilepsies', more often it is known simply as 'epilepsy'

Epilepsy is a neurological condition where there is a tendency for people to have repeated seizures that start in the brain. Anyone can develop epilepsy and although it can start at any age, it is more common in children and people over 65

How common is Epilepsy?

Epilepsy is one of the most common serious neurological conditions in the UK.

Around 456,000 people in the UK have epilepsy - that is 1 in 131 people.

1 in 242 children under 18 years of age have epilepsy, and 1 in 91 adults aged 65 and over has it

Around 75 new cases of epilepsy are diagnosed every day in the UK

Epilepsy is thought to affect around 50 million people worldwide

Symptoms

The symptom of epilepsy is epileptic seizures

An epileptic seizure is a sudden, short-lived event which results in messages from the brain either stopping or becoming confused causing a change in a person's awareness of where they are, what they are doing, their behaviour or their feelings

There are many different types of epileptic seizure, and some people may have more than one type of seizure. Seizures are often put into two groups - partial (or focal) seizures and generalised seizures

In partial seizures the seizure affects just part of the brain. What happens to the person depends on which part of the brain the seizure affects, and what that part of the brain normally does. In simple partial seizures the person is conscious (aware and alert) and will usually know that something is happening. The seizures can include getting an unusual smell or taste, a 'rising' feeling in the stomach, or stiffness or twitching in part of the body (such as the arm or hand). In complex partial seizures the person's consciousness is affected, they may be confused, and afterwards may have no memory of the seizure. They may be able to hear you, but might not fully understand what you have said or be able to respond to you. The seizure might include fiddling with clothing, mumbling or making chewing or lip-smacking movements, talking 'nonsense' or muttering, or wandering around in a confused way

In generalised seizures the seizure affects the whole of the brain. The person will become unconscious and will not remember the seizure afterwards. There are several different types of generalised seizures, including absences and tonic clonic seizures. In absences, the person becomes blank and unresponsive for a few seconds. They will not respond to what is happening around them. In tonic clonic seizures the person goes stiff and then falls to the floor if standing and shakes (convulses). During the convulsions their breathing may be affected and they may become very pale, and they may wet themselves. After the convulsions stop the person breathing usually goes back to normal, and they are often very tired, confused, have a headache and may want to sleep

Most seizures happen suddenly, without warning, and last a short time and most stop by themselves. Although injuries can happen, most people do not hurt themselves and the person doesn't need any medical help

What causes Epilepsy?

Epilepsy is the symptom of an underlying cause but the reasons why some people develop it are not straightforward

There are many possible causes and the cause is not always found. Epilepsy can be the result of a genetic tendency towards seizures (called 'idiopathic epilepsy'), or as a result of a known cause such as a head injury or infection (called 'symptomatic epilepsy')

Treatment

Up to 70% of people with epilepsy could have their seizures fully controlled (be 'seizure free') with the right anti-epileptic drug ('AEDs') treatment. Currently only around 52% are seizure free

For people whose epilepsy doesn't respond to AEDs, there may be other possible treatment options, such as epilepsy (brain) surgery or vagus nerve stimulation, but these are not suitable for everyone

Impact on Health & Social Care

The affect of epilepsy on an individual depends on the nature of their epilepsy and seizure, the level of seizure control they have, and the effect of any treatment. For some people whose seizures are fully controlled, epilepsy may have little impact on their lives. For people whose epilepsy is poorly controlled or difficult to control, their epilepsy may have far-reaching consequences, including an impact on work, driving, relationships, overall health, mental wellbeing and social and leisure activities

People with epilepsy normally have their epilepsy managed by neurologists or a neurologist with a specialist in epilepsy. Children usually have their epilepsy managed by a paediatrician until around 17 years of age

Other specialists that may be involved in the management of epilepsy include learning disability specialists, epilepsy specialist nurses, psychologist or psychiatrist, and occupational health and social services teams

There are NICE clinical guidelines that set out the treatment and management of epilepsy: 'The diagnosis and management of the epilepsies in adults and children in primary and secondary care'

Some people with epilepsy and other associated or co-existing conditions or disabilities need some level of supported or residential care

The National Society for Epilepsy (NSE)

Chesham Lane
Chalfont St Peter
Bucks SL9 0RJ

Tel: 01494 601 300
Helpline: 01494 601 400
Website: www.epilepsysociety.org.uk

The National Society for Epilepsy's mission is to enhance the quality of life of people affected by epilepsy, by promoting research, education and public awareness and by delivering specialist medical care and support services

Charity number 206186

North East Manager

Dee Moore
Tel: 0191 252 0504
Email:Dee.moore@epilepsysociety.org.uk
Web: www.epilepsy.org.uk

Epilepsy Action
Cliff Challenger
Northern Manager
New Anstey House
Gate Way Drive
Yeadon
Leeds
LS19 7XY

Tel: 0113 210 8800
Helpline: 0808 800 5050
Email: info@epilepsy.org.uk
Website: www.epilepsy.org.uk

David Lewis Centre for Epilepsy

Mill Lane Warford
Alderley Edge
Cheshire
SK9 7UD

Tel: 01565 640 000
Fax: 01565 640100
Email: enquiries@davidlewis.org.uk

Website: www.davidlewis.org.uk

During the last 100 years, the David Lewis Centre has embraced a wide variety of political and social change and today aims to provide the highest quality of social, educational and medical care whilst promoting maximum independence and choice.

Key aspects of the Centre's work are aimed at helping children and young people who have been diagnosed with Epilepsy achieve the transition from childhood to adulthood and assisting people of all ages to maximise their potential towards independent living in the community

National Centre for Young People with Epilepsy (NCYPE)

St Piers Lane
Lingfield
Surrey
RH7 6PW

Tel: 01342 832 243

Fax: 01342 834 639

Email: communications@ncype.org.uk

Website: www.ncype.org.uk

The National Centre for Young People with Epilepsy (NCYPE) is a national charity providing specialist services and support for children and young people with epilepsy and other neurological conditions. These include Aspergers, autism and a wide range of learning difficulties from moderate to profound and multiple

The NCYPE offers residential and day services at St Piers School for children aged between 5 and 19, and at the NCYPE Further Education College for students aged between 16 and 25 to continue their learning. Their residential houses offer 24 hour home-from-home residential care

In addition, the NCYPE offers consultant-led diagnosis, assessment and rehabilitation services in collaboration with Great Ormond Street Hospital, as well as a Childhood Epilepsy Information Service which provides training and support for professionals, parents and young people themselves. Their research programme is being developed and led by Professor Helen Cross, the Prince of Wales's Chair of Childhood Epilepsy

Based in Lingfield, Surrey, the NCYPE wants to see better health and education services for all children and young people with epilepsy in the UK and works with other epilepsy charities to achieve this