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Added: 29 August 2011, 09:16
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.