The UK National Health Service (NHS) has apologised to a man who was mistakenly told that he would likely suffer with a hereditary brain disease. Mr C was told in his early 30s that he had the incurable Huntington’s disease, and that it would likely be passed on to his daughters.

Huntington’s disease (HD) is a neurodegenerative condition, usually with onset at middle age. Classic symptoms include mental decline, difficulty with speech, loss of motor function and shifts in personality. Despite extensive research, it remains incurable.

Mr C lodged a complaint with the Scottish Public Services Ombudsman, who investigated this case from the NHS Lothian area. The ombudsman discovered that Mr C and his family all suffered a great deal of anxiety as a result of the diagnosis, and that this caused them to make “certain life choices”. Mr C’s wife and one of their two daughters terminated pregnancies, and one daughter was unable to finish her university degree after the HD diagnosis.

The technology available for retesting when Mr C was diagnosed with HD carried a 4% probability for misdiagnosis. Newer and more accurate testing technology was introduced in 1993, but Mr C was not retested until 2007. This later test showed up negative, meaning that Mr C never had the disease at all. It also shows that he fell into the 4% of cases in which the original tests provided incorrect diagnoses.

The nursing director for NHS Lothian, Melanie Hornett, said that the board was “deeply sorry” for the hardship that the incident caused Mr C and his family. "This was an exceptional case and we have implemented the recommendations of the report to prevent a repeat of a similar incident." ~ BBC News Jan 21