comprehensive care plan
One of the 12 statements in the Epilepsy charter covering the rights and services that a person with epilepsy can expect.
The Epilepsy charter says: ‘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.’
The NICE clinical guideline for epilepsy (opens new window) says that everyone with epilepsy:
"should have a comprehensive care plan ... agreed between the person, family and/or carers where appropriate, and primary and secondary care providers. This should include lifestyle issues as well as medical issues."
Your care plan
A care plan for your epilepsy should be like a ‘road map’ of your condition, and its treatment and management. It should have information about your epilepsy and seizures, and your treatment, including what treatment you are on, any treatments that you are starting or what might be considered in the future.
The care plan should also cover other issues that may be important to you, such as education, work, driving, leisure activities and starting a family. This depends on your situation and your wishes and hopes for the future.
The care plan should be made by you and your healthcare professionals together. You might want to involve your family or carers or anyone else important to you, as they may help you to make decisions about your epilepsy. Developing a care plan together means that you make informed choices about your epilepsy, and know what to do if things change over time. Your plan should be reviewed and updated when needed.
The NICE clinical guideline also says that everyone with epilepsy:
"should have a regular structured review. For adults this should be at least yearly and with their GP or a specialist. For children this should also be at least yearly, and be with a specialist."
You should be offered a regular review with either your GP or your specialist (depending on how your epilepsy is). The review should look at your epilepsy, how it is managed and your care plan. It should also include leisure and lifestyle issues, and be an opportunity for you to discuss any other issues that are important to you at that time. We have produced a letter supporting your right to a structured yearly review. You can present this letter, which was written by the chief executive of Epilepsy Society, to your healthcare professional.
If your epilepsy is not well controlled, your doctor may suggest that a referral would be helpful. This might be to a specialist in secondary care (hospital) or tertiary care (a specialist hospital) to help improve your epilepsy management. They may also suggest that a referral to other support services might be helpful, such as to an occupational therapist.
Get the charter
Order the fold-out guide through our online shop. The guide shows your care pathway from a first seizure, through diagnosis, treatment and self-management. Or download the Epilepsy charter (PDF, 790.74kb).