Overview
The complainants (Mr and Mrs C) complained that Lothian NHS Board (the Board) did not re-test Mr C for Huntington's disease (HD) when new, more accurate, testing was introduced in 1993. Mr C had previously been diagnosed as a likely sufferer of the condition, but received a negative result when re-tested in October 2007. Mr and Mrs C said that their belief that the condition would affect Mr C, and potentially their daughters, caused a great deal of anxiety and led them to make certain life choices. They complained that, had re-testing been provided routinely upon the introduction of more accurate tests in 1993, much of the stress placed on the family would have been avoided and different decisions made about their daughters' future.
Specific complaint and conclusion
The complaint which has been investigated is that the Board did not act reasonably in failing to re-test Mr C for HD following the introduction of more accurate tests (upheld).
Redress and recommendations
The Ombudsman recommends that the Board:
- (i) remind clinicians of the importance of open discussions of available new genetic tests with affected patients in order to enable them to make informed choices; and
- (ii) remind clinicians of the importance of recording such discussions, including relevant information given to patients.
The Board have accepted the recommendations and will act upon the accordingly.