Freedom of Information documents obtained by the Irish Examiner show the HSE could not rely on its HIPE system — which is supposed to record details of all patient discharges from acute hospitals — because it was incomplete.
At a meeting in April to look at the issue of a possible association between Pandemrix and narcolepsy, health officials were told by Dr Howard Johnson of the HSE’s health intelligence unit that there was room for error in HIPE. For instance, the Mater Private Hospital, which runs a sleep disorders clinic, stopped putting data into the system in 2009.
The meeting was told “the HIPE system is probably missing a lot of cases and maybe a limited source for this diagnosis”.
As a result of this deficit, the HSE decided to write to all neurologists, sleep clinics, respiratory physicians, and paediatric psychiatrists to request that they trawl their records for recent cases of narcolepsy. Up to 90 letters were sent but only 19 consultants responded, eight of whom reported diagnosing narcolepsy since 2005.
Problems also emerged with vaccination data on the Irish population.
Health Protection Surveillance Centre director Dr Darina O’Flanagan said that while pandemic influenza data was required for their study on the extent of narcolepsy, much of the data was never entered in the vaccination database. This was partially due to staffing constraints. To address the gaps, an external company was hired. According to the HSE, they created a database of the outstanding records, which was subsequently provided to the centre.
The HSE says about 30 cases of narcolepsy have been identified. This includes those who have not had a final clinical diagnosis of narcolepsy.