Investigation into the death of a 14 year old girl during an MRI scan

A teenage girl with autism died following an MRI scan under general anaesthetic. This has sparked an investigation by the Healthcare Safety Investigation Branch (HSIB) into how scanning under general anaesthetic for patients should be reasonably adjusted for those with autism or learning disability.

What is the Healthcare Safety Investigation Branch?

The HSIB was set up as an independent organisation with a mandate to “conduct independent investigation of patient safety concerns in NHS-funded care across England.” They investigate and make recommendations with an aim to improve healthcare systems and processes, to reduce risk and improve safety.

The findings in this case

An inquest found that the child in this case had been under the care of three specialist consultants for a period of 9 years. She was not referred for the investigation of any underlying disorder by a geneticist, despite her parents requesting this on two occasions and; there being a relevant centre near her home. Her underlying condition which caused her death, cardiomyopathy, was therefore undiagnosed.

What is cardiomyopathy?

The NHS’ definition of cardiomyopathy is that it “is a general term for diseases of the heart muscle, where the walls of the heart chambers have become stretched, thickened or stiff. This affects the heart’s ability to pump blood around the body”.

It is a condition which is usually inherited and is thought to affect 1 in 500 people in the UK.

Autism, learning disability and medical assessments 

The HSIB study found that 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.”

This was especially relevant in this case where the child presented to the hospital on the day of her MRI with a high heart rate and raised blood pressure. This was attributed to her distressed presentation, even though at the time of the test she was calm. During the MRI scan there were four occasions where she needed intervention due to changes in her heart rate.

Recommended change

Following the HSIB investigation, the following recommendations were made to change the way medical practitioners handle similar cases:

• There should be a development in the role and competency framework for learning disability liaison nurses, to ensure that people with learning disabilities and autistic people receive optimal care which respects and protects their rights.
• A system should be developed for sharing care plans for patients with autism, learning disabilities or learning difficulties to enable reasonable adjustments to be made e.g. a standardised care passport

We act in cases involving negligence around the treatment of people with autism.  In one particular case a 26 year old man died due to suffering a hypoglycaemic attack.  He lived alone and he was unable to manage his diabetes and had suffered over 100 hypoglycaemic attacks but the mental health services did not communicate or liaise with the general medical services regarding his care.

Caught between two different medical services their view was that he was capable of managing his own condition. In reality this was not correct, his autism caused him to mismanage his diabetes, which sadly led to his early death.

Blog post written by Stephanie Prior, head of Clinical Negligence.