This charter explains your rights and the services you can expect as someone with epilepsy. It has been developed as part of the ‘Targeting seizures’ campaign: focusing on improving seizure control for people with epilepsy – by Epilepsy Society.
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THE EPILEPSY CHARTER LINKS:
Click on these LINKS (below) to read further information about each area of the Epilepsy Charter (all links open in a new window).
- after a suspected seizure you should be seen by an epilepsy specialist
within two weeks
- if your seizures are not controlled, or your diagnosis is not clear,
you should be referred to tertiary care
- you have a right to appropriate treatment options, and should have a consistent supply of medication
- you are entitled to free prescriptions
- you have a right to be involved in your healthcare
- you should have a comprehensive care plan
- you have a right to choose who provides your care
- you have a right to access your own health records
- you are entitled to ask for a social care needs assessment
- you have the right to be treated with dignity and respect and to not be
- you have a right to complain about services or treatment
- you have responsibilities as well as rights
Rights and recommendations
- In some cases, the charter lists your ‘rights’ – things that you are entitled to by law. In this case we say ‘you have a right to…’
- In other cases, you may not have a legal right, but these are recommendations. In this case we say ‘you should…’
- Where we refer to the NHS Constitution or the Information Strategy this is not specific to your epilepsy, and applies to everyone.
- Where we refer to the NICE clinical guideline, this is specific to your epilepsy and its management.
Terms used in the charter
Primary care – health services such as the GP or pharmacy. This is ‘primary care’ because it is usually the first place you will go for help with anything medical.
Secondary care/ secondary services – health services such as local hospitals and clinics, where you would see someone more specialised than the GP or pharmacist, such as a neurologist. This is ‘secondary care’ because you usually have to be referred by your GP. It also includes A&E departments.
Tertiary care/ tertiary services – specialist hospital or unit, that focuses on specific care for different conditions. For example, if someone is being considered for epilepsy surgery, they might be seen in tertiary care. You have to be referred to tertiary care from either primary or secondary care.
Our Notes: With thanks to the Epilepsy Society for the Epilepsy Charter and links. For further information, visit: www.epilepsysociety.org.uk/AboutEpilepsy/Epilepsycharter
Notes on the Epilepsy Charter:
This charter includes information from the NHS Constitution (opens in a new window),
the NICE* clinical guideline on epilepsy (opens in a new window), The Equality Act 2010 (opens in a new window) and the Information strategy ‘The power of information’ (opens in a new window). It also represents the views of people affected by epilepsy who use Epilepsy Society’s services.
* NICE is the National Institute for Health and Clinical Excellence.
Epilepsy Society is grateful to the following for their help and guidance in producing this charter.
Janet Clark, principal pharmacist, Epilepsy Society
Paul Cooney, media relations executive, National Institute for Health and Clinical Excellence
Sally Garrett-Smith, social worker, Epilepsy Society
James MacDougall, policy unit, Department of Health