We exist to improve the lives
of everyone affected by epilepsy

2.2 Empowering patients

Relevant Tools: A.11, A.14, A.15, A.16

Surveys have suggested that there is a demand from patients for better provision of information, and there is also evidence that this information is especially valued when provided by nurses.1

Utilisation of the knowledge and experience of patients themselves could greatly benefit the quality of patients' care and ultimately their quality of life.2

The NICE clinical guidelines recognise that people with epilepsy and their families and/or carers should be empowered to manage their condition as well as possible.3

Healthcare professionals should adopt a consulting style that enables the individual with epilepsy, and their family and/or carers as appropriate, to participate as partners in all decisions
about their healthcare, and take fully into account their race, culture and any specific need.3

The SIGN guideline also highlights the importance of patient involvement. It recommends that:1

  • information be given in an appropriate manner with sufficient time to answer questions
  • information be repeated over time and reinforced to ensure understanding
  • when providing information, the most suitable format should be considered, eg leaflets, factsheets, video or specialised material for specific patient groups
  • a checklist should be used to help healthcare professionals provide patients and carers with the information they need in an appropriate format.

Healthcare professionals should highlight the Expert Patients Programme (www.expertpatients.co.uk) to individuals with epilepsy who wish to manage their condition more effectively.2 The Expert Patients Programme provides free courses (available in certain areas) aimed at helping people who are living with a long-term health condition to manage their condition better on a daily basis.

Patients with long-term conditions (LTC) should receive personalised care planning which uses common core principles to support self-care in patients.4 A care plan is a defined process often recorded in a single document, which is an assessment of an individual's care needs based on evidence and risk assessment. It states the healthcare and other interventions to be undertaken, the health outcomes to be achieved and the review of care which will occur at regular intervals.5 Care plans will empower patients and support them throughout their condition, whether they have been newly diagnosed or have had epilepsy for many years. The Epilepsy Action Care Plan includes general information about epilepsy together with spaces for healthcare professionals and patients to collate information about their condition.6 A practice can also benefit by giving the patient copies of referral letters and seeking their opinion on service delivery.

Giving patients the skills to manage their condition can have a major beneficial impact on their lives.2 Patients will often have beliefs about the diagnosis and medication that are contradictory to those of the healthcare professional. Unless an agreement can be negotiated about what is and is not acceptable to, and achievable by, the patient, the medicines will not be taken optimally.2 In some cases they will not be taken at all.

An electronic health record can support personalised care planning by providing fields and prompts to record individual views, goals or actions that support self-care or self-management of the individual with the LTC. The Year of Care programme developed a programme of work to address this deficit and tested templates are now available free to use across the NHS.

Templates for care planning are required for the following reasons:

  • to record the essential components of a care planning consultation as part of the routine clinical record
  • to enable reports generated to include this critical patient related information (for hand-held records or outputs to decision support systems, such as HealthSpace)
  • to generate important, personally relevant patient information either before or following the consultation
  • to reinforce training in this new approach to a consultation which is designed to support self-management, but represents a significant culture and practical change for many clinicians
  • to provide aggregated data to support patient centred commissioning for those carrying out the whole Year of Care programme.

Please refer to A.15 for more information.

Primary care has a key role in providing support and information to patients who have epilepsy.7 At the time of diagnosis this information can help mitigate the impact epilepsy will have on many aspects of a person's life. A patient may have many different information needs at this stage, and the primary care team are well placed to inform patients about the support and information available to them.

The information in Table 4 is available from the Epilepsy Action website www.epilepsy.org.uk

Epilepsy Action has been working closely with NHS Yorkshire and the Humber to develop a patient care planning template within SystmOne. The template guides clinicians through the annual review with an aim to improving the health and healthcare of a patient with epilepsy. Based on guidance from Epilepsy Action, it can be completed by anyone who makes a contribution to the patient's epilepsy care. See tool A.15 for more information.

Table 4: Information needs of newly-diagnosed patients,* as identified by Epilepsy Action
About epilepsy8Lifestyle implications8

Precipitating factors8

About AEDs9

What epilepsy is

Probable cause

What happens in a seizure?

First aid in a seizure

When to get medical help



Contraception/the pill






Safety (home, outdoors, school, work)





Missing tablets

Photosensitivity (flashing or flickering lights)


Free prescriptions10

How they work

Importance of concordance or adherence


*If you are not confident about providing this type of information, advice should be sought from secondary care, an epilepsy specialist nurse or the voluntary sector.

Information should be provided in formats, languages and ways that are suited to the individual's requirements. Consideration should be given to developmental age, gender, culture and stage of life of the individual.

The involvement of an epilepsy specialist nurse, if available, is often useful, especially while the person is waiting to be seen by a specialist.1,3For patients whose seizures are likely to recur before a hospital consultation, the GP should take advice from an epilepsy specialist about the most appropriate course of action. Telephone access to expert advice should be made available.



1 Scottish Intercollegiate Guidelines Network (SIGN), 2003. Diagnosis and management of epilepsy in adults. A national clinical guideline. Edinburgh: SIGN.

2 Department of Health (DOH), 2001. The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century. London: Department of Health.

3 National Institute for Health and Clinical Excellence (NICE), 2012. The epilepsies: The diagnosis and management of the epilepsies in adults and children in primary and secondary care. [CG137]. London: NICE.

4 Epilepsy Action, 2010. Personalised Care Planning for People with Long Term Conditions. Leeds: Epilepsy Action.

5 Epilepsy Action, 2010. Developing an Epilepsy Care Plan Final Report. Leeds: Epilepsy Action.

6 Epilepsy Action, 2012. Patient care plan. [online] (Accessed 13/04/2012).

7 Shorvon S, Kitson A, 2000. Clinical standards advisory group. Services for patients with epilepsy: a report of a CSAG committee.London: Department of Health.

8 Epilepsy Action, 2011. Advice and information. [online] (Accessed 13/04/2012).

9 Epilepsy Action, 2011. Anti-epileptic drug treatment. (Accessed 13/04/2012).

10 Epilepsy Action. 2011. First aid for seizures. [online] (Accessed 14/01/2012).

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