Tailored advice for teenagers with epilepsy may improve how they manage their condition, according to today’s FAI report on the sudden deaths of Fife teenagers Erin Casey and Christina Ilia. Among Sheriff Duff’s 11 recommendations, Epilepsy Scotland especially endorses the key recommendation that the vast majority of patients with epilepsy, or their parents or carers where appropriate, should be advised of the risk of SUDEP (Sudden Unexpected Death in Epilepsy).
Information shared appropriately with people about the risk of fatal seizures helps them, and their families, to be aware of what they can do to stay well. Sheriff Duff also highlighted the importance of NHS Boards prioritising epilepsy care by having an epilepsy specialist nurse service to provide lifestyle advice and discuss risk factors linked to epilepsy.
Epilepsy Scotland Chief Executive Lesslie Young remarked: “SIGN Guidelines indicate best practice in epilepsy care. This covers providing information after someone is diagnosed, including details about SUDEP. We expect clinicians would do this, unless there are exceptional circumstances, in which case they need to record their reasons for not sharing this information with the person or their family. We hope the future review of SIGN Guidelines will take this important element into account, as well as consider the training support needs of health professionals.
“Our recent Epilepsy Specialist Nurses (ESN) campaign encouraged NHS Boards to consider additional posts, since Scotland is short of the 62 ESNs it needs. ESNs are well placed to provide consistent, high quality information and spend the necessary time to make sure people with epilepsy, and particularly teenagers, understand how to best manage their condition.
“Next month Epilepsy Scotland is launching a ‘Control Transition’ (CTRL-T) campaign. It will promote ways to help teenagers and young adults with epilepsy safely move towards independence and detail local authority and NHS services which can support this.
Notes to the editor
1 Epilepsy Scotland works with over 40,000 people affected by epilepsy to ensure that their voice is heard. We campaign for improved healthcare, better information provision and an end to stigma. This common serious neurological condition affects one in 130. Contact our helpline (0808 800 2200),email email@example.com, text 07786 209501, or download information from our website: www.epilepsyscotland.org.uk
2 Sheriff Duff’s report concerns the epilepsy-related deaths of Fife teenagers Erin Casey and Christina Fiorre Ilia. His 11 recommendations include sharing information about SUDEP with a view to help compliance, especially for teenagers, with suggested mechanisms that may safeguard people with epilepsy. The report is available at http://www.scotcourts.gov.uk/opinions/2011FAI40.html
3 Sheriff Duff advocated that information and advice about SUDEP should be provided by the consultant in charge of the person’s case, or where appropriate, by an Epilepsy Specialist Nurse. He also recommended that current arrangements for the provision of written information packs to newly diagnosed epilepsy patients and their families should be reviewed to ensure that they are adequate and meet the needs of patients for information and access to services and support at a distressing time. Epilepsy Scotland and Epilepsy Bereaved worked together in 2008 to produce a leaflet on SUDEP for patients and carers, which highlights Erin Casey’s story.
4 NHS Boards are being asked to prioritise consideration of their arrangem for the care of people with epilepsy in today’s report. For details of Epilepsy Scotland’s campaign for more Epilepsy Specialist Nurses go to http://www.epilepsyscotland.org.uk/working-for-you/press-releases/2008-05-22-A-Helping-Hand-for-Epilepsy-Specialist-Nurses/
5 For further comment please contact Epilepsy Scotland’s Public Affairs Officer: Allana Parker on: 0141 427 4911 or 07884 012 147.