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your rights and choices

This charter explains your rights and the services that you can expect as someone with epilepsy.

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…’

Epilepsy charterWe have a credit card sized fold-out guide to your rights and choices, including your care pathway from a first seizure, through diagnosis, treatment and self-management. Order the free fold-out guide through our online shop

Get a copy of the charter

Download the Epilepsy charter (PDF, 786.69kb).

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 and you should have enough information, and appropriate support, so that you can make informed decisions about your health and be an active participant in all decisions about your epilepsy treatment and management.

You should have a comprehensive care plan agreed with your healthcare professionals, which should include both medical and lifestyle issues. You should also have an annual review of your epilepsy.

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. Anyone caring for you is also entitled to an assessment of their needs. You may also be entitled to benefits.

You have a right to be treated with dignity and respect and to not be discriminated against.

You have a right to complain about services or treatment.

You have responsibilities as well as rights.

Sources used to develop the Epilepsy charter.

Terms used in the charter

Primary care – this means health services such as the GP or pharmacy. This is ‘primary care’ because it is usually the first place you will go to for help with anything medical.

Secondary care/ secondary services – this covers 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 – this refers to specialist hospitals or units that focus 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.

Where we refer to the NHS Constitution or the Information Strategy, this is not specific to your epilepsy, but applies to everyone.
Where we refer to the NICE clinical guideline on epilepsy, this is specific to your epilepsy and its management.

Notes on the charter

This charter includes information from the NHS Constitution (opens new window), the NICE* clinical guideline on epilepsy (opens new window), the Equality Act 2010 (opens new window) and the Information strategy ‘The power of information' (opens 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.

Find out more about the documents and organisations that have provided much of the basis for this charter.

Epilepsy Society is grateful to the following for their help and guidance in producing this charter:

  • Eisha Gosrani, 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.