Image of Undiagnosed cardiomyopathy in a young person with autism

Undiagnosed cardiomyopathy in a young person with autism

Summary

The national investigation

People with additional needs receiving care in hospital may require adjustments to promote their safety and improve their experience of care.

Patients who need an MRI scan under general anaesthetic often come into hospital for the day to have the procedure. They may have a pre-anaesthetic assessment prior to the scan.

From the point of referral and consent through to the actual procedure, understanding the wishes of people with autism, learning disabilities and learning difficulties can help with making adjustments to reduce anxiety and allow healthcare staff to plan appropriately.

This investigation seeks to understand the safety risks associated with patients with additional needs, as highlighted in the reference event.


Reference event

We were 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 intensive care unit and subsequently transferred to the paediatric intensive care unit at a regional children’s hospital where they died three days later.

The reference event highlighted 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.


Investigation summary

This investigation looks at:

  • The current evidence base and guidance for anaesthetic pre-assessment clinics, on-day procedures which involve anaesthetics, consent for 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.