This information is relevant for people who live in England. If you are looking for information about medical care in another country, please contact your local epilepsy organisation.
In this section
We currently do not have information about guidelines and initiatives in Wales or Northern Ireland.
The National Institute for Health and Care Excellence (NICE) guideline
NICE is an independent organisation that provides guidelines for treatment and care for people using the NHS in England, Northern Ireland and Wales. The guidelines are for healthcare professionals, local authorities, charities, and patients and their carers. They are to help them make decisions about healthcare, public health or social care services. They are also to make you aware of the services available, and to have the confidence to ask for the treatment, care, and information you need.
It is important to remember that NICE produce guidelines, which are based on good practice. They don’t produce regulations. So professionals can use their judgment about any treatment or care you need, rather than using the guidelines. However, if the treatment or care you feel you need isn’t recognised by NICE, you may have difficulty in getting it.
In 2012, NICE produced a guideline called The epilepsies: the diagnosis and management of the epilepsies in adults and children in primary and secondary care.
Full information about the NICE guideline on epilepsy is on the NICE website: nice.org.uk
A summary of the NICE epilepsy guideline
If you have had a possible seizure, you should have an appointment with a specialist medical practitioner with training and expertise in epilepsy. This should be within two weeks. This specialist should make a diagnosis, using tests such as an EEG (electroencephalogram) and MRI (magnetic resonance imaging) where appropriate. You should be able to have the tests within four weeks of the specialist asking for them.
If you are diagnosed with epilepsy, the specialist should classify it by seizure type and syndrome. A syndrome is a group of signs and symptoms that, added together, suggest a particular medical condition. The specialist should agree a care plan with you that should look at lifestyle as well as medical issues.
Epilepsy medicines are the main treatment for epilepsy. They should be started under the guidance of the specialist. Some medicines work better for some seizure types. And some make some seizure types worse. NICE recommends which medicines to use for different types of seizures. They also give information about using epilepsy medicines in pregnancy.
Other treatments are sometimes available, for example the ketogenic diet and surgery. The ketogenic diet is a special diet for children with difficult to control epilepsy.
The guideline says you should be fully involved in all discussions about the benefits and risks of your treatment. The specialist should discuss the following with you:
- Your diagnosis and the type of seizures you have, whether it is an epilepsy syndrome, and what the long-term outlook is
- The benefits and risks of epilepsy medicines
- Your lifestyle and personal preferences. These must be considered when you are agreeing the best medicine to use for your epilepsy
- How epilepsy might affect your life, including safety issues
- Your care plan, including what options you have if the first medicine you try does not stop your seizures.
After two years without seizures, you should have the opportunity to discuss withdrawing, or continuing epilepsy medicines, with your specialist. If you decide to withdraw your epilepsy medicines, this must be managed by your specialist.
You should be given the information to manage your condition as well as possible. Your GP and specialist should agree all decisions about your healthcare and lifestyle with you. They should provide information (in a format that is useful to you) about a range of issues such as:
- Epilepsy as a condition
- Treatment options
- Risk management
- First aid
You should also be given information about voluntary groups and organisations, such as Epilepsy Action, who can give you more advice and information.
Epilepsy Action has more information about all of the issues listed above.
You should have regular reviews of your epilepsy and treatment. For adults, this is usually once a year with your GP or specialist. If you continue to have seizures or side-effects from your epilepsy medicines, or need particular advice, you should be referred to a specialist by your GP. An example would be if you are a woman planning a pregnancy.
Children and young people should have their review with a specialist, at least once a year, but more if necessary. The specialist should be a doctor who treats and cares for children (a paediatrician). They should have had special training in diagnosing and treating epilepsy.
If your epilepsy is difficult to control, you may be offered a referral to a team of very highly trained healthcare professionals in a specialist centre. This is known as a tertiary centre or tertiary service.You should be referred to a specialist centre if:
- The doctors are not sure what type of epilepsy syndrome or seizures you have
- Your seizures are not controlled with epilepsy medicines within two years of starting them
- You have tried two different epilepsy medicines, but these have not worked
- You have, or are at risk of, severe side-effects from epilepsy medicine
- You have a psychological or psychiatric condition
- There is something abnormal in your brain.
This specialist service should include a team of professionals who are experienced in assessing people with complex epilepsy. They should have access to investigations and medical and surgical treatment.
If your epilepsy is not difficult to control but you have concerns about issues such as pregnancy, you should also have access to the specialist service.
If you have epilepsy and learning disabilities, you should receive the same support and care for your epilepsy as everyone else. You will also need the care of the learning disabilities team.
Epilepsy Action has more information about epilepsy and learning disabilities
You should be given information and counselling about how epilepsy and epilepsy medicines may affect:
- Becoming pregnant
- Pregnancy itself
- Caring for children
- The menopause
You should be given this information before you become sexually active, pregnant, or reach the menopause.
Epilepsy Action has more information about epilepsy and issues that affect women.
Seizures usually end of their own accord, but some people have long or repeated seizures. These seizures may need to be treated with emergency medicines. These are usually midazolam or diazepam. When you are diagnosed, you should be given information about what to do, and who to contact, in an emergency. This might happen at your review. The named person should be included in your care plan.
Epilepsy Action has more information about seizures that last a long time
If a person with epilepsy dies suddenly, and no obvious reason can be found after a post-mortem examination has been done, it’s called sudden unexpected death in epilepsy (SUDEP). It’s estimated that SUDEP causes about 500 deaths each year in the UK. Some people with epilepsy have a higher risk of SUDEP than other people with epilepsy.
Healthcare professionals should tell you about SUDEP. They should discuss your own risk of SUDEP, and how to try to reduce this risk.
Epilepsy Action has more information about sudden unexpected death in epilepsy
NICE quality standards
The National Institue for Health and Care Excellence (NICE) have produced two ‘quality standards’; one for adults with epilepsy and one for children and young people. Each quality standard is a shorter version of some of the key points stated in the NICE Guideline.
The epilepsy quality standards are designed to provide high quality treatment, and a better quality of life for people with epilepsy. They are made up of nine quality statements about the type of services people with epilepsy should receive. And each quality statement can be measured to see whether the quality standards are being met.
Full information about the NICE quality standards is on the NICE website: nice.org.uk
The NHS Constitution sets out your rights as an NHS patient. These rights include access to health and community care services, and to quality care and treatment. They also cover your right to confidentiality, information, and the right to complain if things go wrong.
The NHS Constitution says that you have a right to the best treatment and care available in England for your epilepsy.
Full information about the NHS Constitution is on the NHS website: nhs.uk
The Care Quality Commission (CQC) regulates all health and adult social care services in England, These include services provided by the NHS, local authorities, private companies and voluntary organisations.
The CQC makes sure that essential standards of quality and safety are being met wherever care is being provided. These include:
• Care homes
• GP services
• Care received in your own home
They do this by regularly checking services to make sure they meet national standards. Where services are not up to standard, they can take action to make sure those standards are improved.
The CQC listens to what people say about the services they have received, and involves the public in any decisions they need to make. They also provide information online about how the services in your area measure up to the national standards.
Full information about the Care Quality Commission and about services in your area are at the website: cqc.org.uk
You can also tell the CQC about any concerns you have about your care
Tel: 03000 616 161
In England, where it is available, the Choose and Book service lets you choose and book your first appointment with a consultant-led epilepsy specialist team. Choose and Book gives you some choice about the place, time and date of your appointment.
Epilepsy Action has more information about Choose and Book
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 Helpline on 0808 800 5050.
Also see information on Epilepsy Action's 2014 Seize Control campaign.
Epilepsy Action would like to thank Carole Rushworth, Practice Manager and Dr Withers, GP, at Grange Practice, Allerton, Bradford, UK and Jo Geldard, Epilepsy Specialist Nurse, Leeds, UK for their help in producing this information.
Carole Rushworth, Dr Withers and Jo Geldard have no conflict of interest to declare.
This information has been produced under the terms of The Information Standard.
Updated August 2014To be reviewed August 2017