The Right to Sue for Non-Communication or Delay in the Diagnosis of Neurodegenerative Diseases.

Delay in diagnosis of neurodegenerative diseases can be caused by clinical factors such as the lack of recognition of symptomatology as attributable to the disease or confusion of symptoms with those from other conditions. A number of studies have shown that psychiatric symptoms may precede motor symptoms and the ultimate diagnosis, in substantial part because they may mirror symptoms arising from other aetiologies. Any delay in diagnosis of relatives with neurodegenerative diseases and failure to communicate such a diagnosis can have very significant adverse effects for provision of treatment and for decisions made which can result in the passing on of the disease. In turn such decisions made in the absence of information can cause significant distress which in its own right can be counter-therapeutic. This article reviews two important decisions made by the High Court of England and Wales in 2015 and 2016, ABC v St George’s Healthcare NHS Trust [2015] EWHC 1394 and Smith v University of Leicester NHS Trust [2016] EWHC 817, in which rights to sue were denied in the scenarios of failure to disclose neurodegenerative heritable symptomatology to relatives. In both decisions it was decided that no negligence was engaged in by a failure on the part of health professionals to disclose their knowledge of a person’s neurodegenerative condition to relatives of the person, in spite of the fact that failure to do so would foreseeably cause harm. This editorial argues that so doctrinaire an approach to the ethical obligation of confidentiality is counter-therapeutic and needs to be reconsidered.