This section of the guideline is intended to highlight the main issues that healthcare professionals should discuss with patients and carers. It is based on the best available evidence of what is effective.

6.1 Advice and information on epilepsy

People with epilepsy and carers have a need for clear, accurate and appropriate information and advice. Surveys have reported that up to 90% of patients want more information and felt that they had received little advice about the cause of epilepsy, effects and interactions of drugs and the avoidance of potentially dangerous situations.^{283, 284} Conversely, it is known that patients can forget or fail to take in much of what they are told during clinic visits so written information, helpline telephone numbers and contact details of voluntary organisations should be given to all patients. Evidence level 3,4

Almost as important as the quality of information is the manner in which it is given. Many patients prefer talking to an epilepsy nurse or someone from a voluntary organisation with whom they feel more at ease.²⁸⁵ Some information may have to be repeated on different occasions to ensure understanding. A general information leaflet should be given to all patients at the time of diagnosis. Checklists and tests of epilepsy knowledge are available from support organisations. A recent study concluded that information for patients should be suited to their understanding, making adjustments for different socio-cultural contexts.²⁸⁶ It should be noted that children are frequently carers of a parent with epilepsy, and need to be given proper support. Patients with epilepsy place great importance on having a doctor who is approachable, communicative and knowledgeable and on receiving adequate information on their condition.²⁸⁷ Evidence level 3,4

Guidelines for teachers have been produced by Epilepsy Scotland. A recent survey found that there had been little improvement in information provision despite the problem having been highlighted previously.²⁸⁸ It was concluded that reducing the information deficit would significantly reduce the morbidity associated with epilepsy. Evidence level 3,4

Information should be given in an appropriate manner with sufficient time to answer questions. The type of information given should be recorded in the patient notes.

Information should be repeated over time and reinforced to ensure understanding.

Patients should be given information to take home in the most suitable format eg leaflets, factsheets, video or specialised material for people with learning disability, making adjustments for different socio-cultural contexts.

A checklist should be used to help healthcare professionals to give patients and carers the information they need in an appropriate format.

6.1.1 EXAMPLE INFORMATION CHECKLIST

Example checklist that can be used by healthcare professionals to identify what information to give patients and carers:

* Items marked with an asterisk are considered essential information. The other material should be given when it is relevant. Patient information is readily available from the websites listed in Section 6.2.

6.2 List of useful contact details including web-based information

Epilepsy Scotland
48 Govan Road, Glasgow G51 1JL
Helpline: 0808 800 2200 Fax: 0141 419 1709
E-mail: enquiries@epilepsyscotland.org.uk Website: www.epilepsyscotland.org.uk
The National Society for Epilepsy
Chesham Lane, Chalfont St Peter, Bucks SL9 0RJ
Helpline: 01494 601400 Tel: 01494 601300 Fax: 01494 871927
Website: www.epilepsynse.org.uk
Epilepsy Bereaved (for the relatives of people who have died from epilepsy)
PO Box 112, Wantage, Oxon OX12 8XT
Bereavement Support Contact Line -24 hour answering service: 01235 772852
Tel: 01235 772850
Email: epilepsybereaved@dial.pipex.com Website: www.sudep.org
Quarriers (residential epilepsy assessment centre and information on Quarriers Epilepsy Fieldwork Services)
Hunter House, Quarriers Village, Bridge of Weir, Renfrewshire PA11 3SX
Tel: 01505 616006
Email: enquiries@quarriers.org.uk Website: www.quarriers.org.uk
Epilepsy Action
New Anstey House, Gate Way Drive,Yeadon, Leeds LS19 7XY
Helpline: 0808 800 5050 Free Fax: 0808 800 5555
Email: helpline@epilepsy.org.uk Website: www.epilepsy.org.uk
Enlighten - Action for Epilepsy
5 Coates Place, Edinburgh EH3 7AA
Tel: 0131 226 5458 Fax: 0131 220 2855
Email: info@enlighten.org.uk
Epilepsy Connections
100 Wellington Street, Glasgow G2 6DH
Tel: 0141 248 4125 Fax: 0141 248 5887
Website: www.epilepsyconnections.org.uk
Joint Epilepsy Council of the UK and Ireland
Tel: 01943 871 852
Website: www.jointepilepsycouncil.org.uk
Epilepsy Pregnancy Register
Tel: 0800 3891248
NHS 24
Nurse-led helpline: 08454 24 24 24