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NI Government to examine case for epilepsy database

The Northern Ireland Health Minister is to examine the case for establishing an epilepsy database to record patient care. The announcement came in response to an Assembly debate led by members of the all-party group on epilepsy.

Chair of the all-party group, George Robinson MLA, said:

Most debates are littered with impressive facts and figures about service provision, patient numbers and even mortality rates. However, those facts cannot be used today because they do not exist: no definitive information is gathered on a Northern Ireland-wide basis about the number of people who live with epilepsy, misdiagnosis, or the incidence of sudden, unexpected death from epilepsy. We need a database; we need facts in order to accurately deliver services to people with epilepsy.

The Minister, Michelle O’Neill, acknowledged that better information and analysis could improve patient care. Government officials have been asked to assess what information is currently being recorded and consider the merits of establishing a distinct database for epilepsy.

Assembly Members from across the parties spoke in support of the proposal, which also called for more people to have access to an epilepsy specialist nurse. The debate follows a meeting earlier this year in Westminster, where clinicians, parliamentarians and members of the public discussed the benefits of establishing a UK-wide epilepsy registry.

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Read the debate in the NI Assembly

Read about the meeting in the UK Parliament (March 2016)

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Cyber EssentialsFundraising RegulatorYoung Epilepsy is the operating name of The National Centre for Young People with Epilepsy (NCYPE).
Registered Charity number 311877 (England and Wales)

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