Overview
The complainant (Mrs C) raised a number of concerns about the quality and quantity of information provided to her late daughter (Miss C) following her diagnosis of epilepsy in April 2006. Mrs C considered that Miss C was denied an opportunity to fully understand the consequences of not taking her prescribed medication on a regular basis and that this may in turn have contributed to Miss C's premature death.
Specific complaint and conclusion
The complaint which has been investigated is that Fife NHS Board (the Board) failed to provide Miss C with adequate information thereby denying her appropriate care and management between April 2006 and her death in October 2006 (upheld).
Redress and recommendations
The Ombudsman recommends that the Board:
- (i) provide written information to patients following diagnosis on a proactive basis and in line with that recommended in SIGN 70;
- (ii) advise her when the epilepsy nurse-specialist is in post; and
- (iii) apologise to Mrs C that written information about Miss C's condition and changes in her drug regime were not made available to Miss C and that there is no evidence of an individualised decision being made not to tell Miss C about Sudden Unexpected Death in Epilepsy.
The Board have accepted and acted on recommendations (i) and (ii). Recommendation (iii) has not been accepted (see paragraph 48).
The Ombudsman will ask the Scottish Intercollegiate Guidance Network (SIGN) to consider the findings of this report as part of their on-going consideration of the review of the guidelines on Epilepsy in Adults (SIGN 70). Further, in light of the difference in views recognised in paragraph 48, the Ombudsman will ask that the Directorate of Health and Wellbeing consider the need for more research into patient views on information giving and into the possible risk factors for SUDEP and the use of this research to inform ethical guidance.