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  • HSIB report: Undiagnosed cardiomyopathy in a young person with autism (19 March 2020)

    • UK
    • Investigations
    • Pre-existing
    • Original author
    • No
    • Healthcare Safety Investigation Branch
    • 19/03/20
    • Health and care staff, Patient safety leads


    The objective of this investigation was to understand the context of magnetic resonance imaging (MRI) scanning under general anaesthetic and how care may be reasonably adjusted for patients with autism or learning disabilities.

    The ‘reference event’ was Alice, a teenage girl who had autism. Sadly, Alice died following her MRI scan under general anaesthetic. The findings and conclusions of this investigation may be applicable to other non-invasive procedures carried out on patients who are under general anaesthetic.


    The investigation identified:

    • There is an opportunity to clarify the consent requirements for diagnostic imaging facilitated by a general anaesthetic.
    • There is variation in the information given to patients regarding anaesthesia at the point of referral for an MRI scan under general anaesthetic.
    • The observations and examinations to be routinely performed in pre-anaesthetic assessment are not defined nationally. The investigation found variation in the hospitals it visited.
    • Children coming into hospital for an MRI scan who had been assessed as fit for anaesthetic were perceived as “well” by ward staff.
    • Children with autism, learning disabilities and/or learning difficulties often find clinical environments distressing, which may be reflected in their physiological observations. This may result in diagnostic overshadowing, where problems such as autism (or a medical condition) are attributed as the cause of other new problems, rather than considering other underlying causes, thereby leaving other co-existing conditions potentially undiagnosed.
    • Children with autism, learning disabilities or learning difficulties may benefit from reasonable adjustments being made when attending hospital.
    • Electronic flagging systems can help staff identify patients who may benefit from reasonable adjustments. Hospital passports provide valuable information to assist with implementation of these adjustments.
    • The model of care for learning disability nursing teams is not standardised nationally.
    • There is an opportunity to enhance the existing published guidance available to assist clinicians involved in general anaesthetics to prepare for adverse events in the MRI scanning environment.
    • Professional networks for anaesthetists provide the opportunity for shared learning and consensus regarding best practice.
    • It is challenging to comply fully with the existing published standards for anaesthetic equipment used in MRI environments. 
    HSIB report: Undiagnosed cardiomyopathy in a young person with autism (19 March 2020) https://www.hsib.org.uk/investigations-cases/undiagnosed-cardiomyopathy/final-report/
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