Learning Disability Today
Supporting professionals working in learning disability and autism services

“Significant failings” in medical and nursing care contributed to death of autistic man

A Safeguarding Adults Review (SAR) has found that an autistic man who died at the age of 53 “was not properly assessed” and “his needs were not met” in the months leading up to his death.

The man, known as SK, died after having a stroke, which Karen Rees – an Independent Safeguarding Consultant who authored the report – said “could have been due to complications of severe self-neglect.”

While there was a “dramatic” change in the man’s presentation three months before his death, the safeguarding system was not triggered and there were no multiagency meetings until just before SK died.

Rees said there had been “significant failings” in medical and nursing care and noted that “warning signs were not acted upon”.

Referrals were made to mental health and crisis services but there were barriers to access

SK, who was autistic and had pathological demand avoidance (PDA), lived in a residential care home after being detained under the Mental Health Act at the age of 44. This was following the death of his father which caused his mental health to deteriorate.

For the 12 years SK lived in this home, it is reported he lived “largely without issue.” However, in the months before his death, SK’s physical health and self-care deteriorated rapidly.

He was refusing medication, which he needed to manage his chronic kidney disease and heart failure, he stopped eating and drinking properly for 11 weeks, and stopped washing and dressing.

The staff at the care home attempted to get support from a Mental Health Trust as well as calling in support from his GP surgery, but SK would not let the doctors near him.

SK continued to refuse to wash or get dressed. He remained mostly in bed despite it being soiled with faeces, and he refused to let the staff change it. Despite this, a referral to the intensive support team from the Mental Health Trust was rejected.

This was because SK did not meet their criteria and because he had previously presented with self-neglect type behaviours. However, the review board found there were elements this time that were different, with the behaviours becoming much more severe and continuing for a longer period.

Stroke could have been due to “complications of severe self-neglect”

Eventually, SK’s care home was told by NHS 111 that he would need treatment in hospital. An ambulance was sent and he was taken to A&E.

It was only at this point that a safeguarding referral was submitted to the local authority with an agreement to progress to a strategy meeting 12 days after his submission.

However, on the same day as the strategy meeting took place, SK’s physical health condition deteriorated and he was admitted to the Intensive Care Unit.

A CT scan showed he had a stroke and SK passed away four days later. TSAB said the stroke “could have been due to complications of severe self-neglect.”

Safeguarding lens should have been implemented sooner

While there were examples of good practice, the SAR found that there was a significant lack of training and not all professionals who cared for SK had a good understanding of autism or pathological demand avoidance (PDA).

There was also “no evidence” that legal requirements laid out in the Autism Act were in place locally where SK lived or where he was in hospital. The hospital trust had added a flag on their system but his did not appear to translate into any services.

SK also had a ‘This is Me’ passport which provides information about a person who is autistic, has learning disabilities or dementia, but this was not taken to hospital when SK was admitted or used by visiting professionals in the way it could have been.

The professionals reviewing SK’s case said a safeguarding lens should have been used as this would have brought in independent experts in safeguarding and possibly autism who may have been able to have had a more objective view.

Needs were not met

Overall, the report concluded that the professionals caring for SK ultimately “struggled to understand” why SK deteriorated so rapidly and were “unable to find solutions and improve his circumstances.”

Rees said the system that was supposed to protect SK “did not work effectively” despite a national drive to improve outcomes for autistic people.

“The safeguarding system was not triggered despite the presentation of SK and therefore there were no multiagency meetings until just before SK died.

“This meant that there was no pooling of expertise and working together to share information which ultimately led to SK not being appropriately assessed and his needs were not met in the time up until his death,” she concludes.

The author met with the family member on completion of the report, who welcomed the findings and hoped that the recommendations would be taken forward to make changes to those with autism in receipt of services.

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