The Healthcare Safety Investigation Branch (HSIB) has published an interim bulletin for its investigation looking at undiagnosed cardiomyopathy in a young person with autism.

Interim bulletins are released to share further details for each investigation, including how it’s met HSIB criteria, the history of the event it relates to, the national context and any identified safety issues.

Reference event

HSIB was notified by a district general hospital of the death of a young patient who had undergone an MRI scan under general anaesthetic to investigate their recurrent headaches.

The patient was being treated for growth hormone deficiency and had autism spectrum disorder and an associated learning difficulty.

During the scan, the patient suffered unexpected deterioration, which was subsequently discovered to have been caused by an undetected heart condition (cardiomyopathy). The patient was stabilised in the hospital intensive care unit and subsequently transferred to the Paediatric Intensive Care Unit at a regional children’s hospital but died three days later.

The reference event highlights potential national safety risks linked to care pathways, human factors, awareness and training regarding patients with autism, learning difficulties and learning disabilities, consent, and clinical practice guidance when undertaking MRI scans under anaesthetic.

National context

The investigation will work with stakeholders to develop safety recommendations to support clinicians to effectively communicate with, and assess, patients to optimise the chances of detecting diseases, some of which may be more prevalent in those with autism or learning disabilities.

Identified safety issues

The investigation will focus on:

  • The current evidence base and guidance for anaesthetic pre-assessment clinics, on-day procedures which involve anaesthetics, consent in children, and the considerations for patients with special needs or who require reasonable adjustments to be made.
  • The impact that autism, learning disabilities and learning difficulties have on mainstream healthcare service provision in relation to the safety risks identified, and the detection of diseases in patients with special needs.

Ongoing investigation

Our investigation continues to explore the identified safety issues and welcomes further information that may be relevant, regardless of source.

We’ll report any significant developments as the investigation progresses.

More information

For more information please download the interim bulletin or visit the ‘undiagnosed cardiomyopathy in a young person with autism’ investigation page.

Sign-up for investigation email alerts by contacting enquires@hsib.org.uk.