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of everyone affected by epilepsy

Getting good healthcare

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

This information covers seizure diaries, care plans, first aid, NICE guidelines and emergency treatment.

Seizure diaries

Keeping a seizure diary is a good way of having a record of someone’s health day by day. It’s also a really 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

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/my-healthcare-passport

NICE (National Institute for Health and Care Excellence) guidelines and treatment

In order to get the best healthcare for the person you are looking after, you need to know about the NICE guidelines.

There are NICE guidelines about treatment and care for someone with epilepsy. And there are some specific guidelines for people with epilepsy and a learning disability. These can be found at 1:16. In particular, it is worth knowing about this one:

1.16.3.1 Enable children, young people and adults who have learning disabilities, and their family and/or carers where appropriate, to take an active part in developing a personalised care plan for treating their epilepsy while taking into account any comorbidities. (These are other conditions which can happen at the same time as learning disabilities.)

Website: nice.org.uk/guidance/cg137/chapter/1-Guidance

There are specific NICE Guidelines for someone with challenging behaviour and a learning disability.
Website: nice.org.uk/guidance/ng11

The Challenging Behaviour Foundation provides information and support.
Helpline: 0300 666 0126
Website: challengingbehaviour.org.uk/contact

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. However, some people have seizures that last longer than 5 minutes. Seizures that last longer than 30 minutes can cause damage to the brain, or even death. This is also the case for a cluster of shorter seizures that last for 30 minutes or more. In both cases, this is known as status epilepticus.

Seizures lasting for more than 5 minutes need treating before they turn into status epilepticus.

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.

Other types of status epilepticus
Other types of seizures can also turn into status epilepticus, so also need treating if they last more than 5 minutes.

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.

Rectal diazepam and buccal midazolam are both used as an emergency treatment. Buccal midazolam has the advantage of not compromising a person’s dignity when it’s used. The issue of consent to emergency treatment can be a challenging one for the person involved and the carer. The NHS Choices 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/Pages/Introduction.aspx

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

If you would like to see this information with references, visit the Advice and Information references section of our website. If you are unable to access the internet, please contact our Epilepsy Action Helpline freephone on 0808 800 5050.

Code: 
B010.03

Our thanks to Professor M. Kerr, Welsh Centre for Learning Disabilities, who reviewed and contributed to this information.

Professor M. Kerr has no conflict of interest to declare.

This information has been produced under the terms of The Information Standard.

  • Updated November 2015
    To be reviewed November 2018

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