I felt sick.
Despite telling hospital staff that her son had epilepsy and was having seizures as a patient, he was left unsupervised in the bath. Two weeks later, Southern Health Trust wrote in board minutes that a “service user” had died of natural causes.
Sara, a senior researcher and autism specialist at Oxford University, demanded an independent investigation which found the death was preventable and neglect was a contributing factor.
Last week, British Health Secretary Jeremy Hunt said the government was “profoundly shocked” by a report that found less than 1 per cent of 337 unexpected deaths of people with intellectual disability between April 2011 and March 2015 were investigated by Southern Health Trust. The average age at death was 56, seven years younger than the national average. Half of the deaths occurred in acute-care settings.
This was part of a larger report looking at 1,454 unexpected deaths of patients with mental health problems or intellectual disability. It was only undertaken due to immense advocacy by Sara Ryan and her family and friends (including a sophisticated social media campaign called @JusticeforLB. Connor's nickname was "laughing boy").
Today the report was formally released.
In 238 deaths of people with intellectual disability, the most common reasons for premature death were: “delays or problems with diagnosis or treatment and problems identifying needs and providing appropriate care in response to changing needs.”
The authors say the nature of the unexpected deaths of people with intellectual disability echoed cases identified in a 2007 Mencap report called Death By Indifference.
“It was disappointing to see the Death by Indifference findings reflected in the cohort of death reports we reviewed,” the authors say. They note that the issues they identified mirrored the “institutional discrimination” against people with intellectual disabilities and their families found in the Mencap report.
“…the real, underlying cause of many deaths of people with a learning disability ‘is the widespread ignorance and indifference throughout our healthcare services towards people with a learning disability,’” they quote from the Mencap report. This poor care stems from “ignorance and prejudice.”
Here’s one example in the new report: “A service user was seen by the GP but care home staff took him to [emergency]. He was turned away from [emergency] and sent back to the care home. The service user was admitted shortly after and died of a terminal illness. It was reported by Trust staff that no painkillers were given on the acute ward as the service user did not appear in pain. There was no further investigation or escalation by the Trust which, whilst not directly responsible, did not act on the incident report.”
It’s interesting to note that while less than 1 per cent of unexpected deaths in patients with learning disabilities were investigated, 30 per cent of deaths in mental health patients were.
In looking at all investigations, families were left out of the process 64 per cent of the time.
Key findings included “a lack of leadership, focus and sufficient time spent in the Trust on carefully reporting and investigating unexpected deaths” and an inability to demonstrate how they had learned from the deaths and improved care as a result. The quality of reports was poor and careless. In one case a teenage son was referred to in the same report with three different names.
And in related news about the care of children and adults with intellectual disabilities, consider this:
-A do-not-resuscitate order was placed in the medical file of a British man with Down syndrome, with no consultation with his family, with these reasons listed: “Down syndrome, unable to swallow (tube) fed, bed bound, learning difficulties.” The hospital has apologized for breaching the man’s human rights.
-A 17-year-old with autism dies after being restrained in an unlicensed Oshawa, Ont. group home. From a related Toronto Star story: “It is stunning to me how these children... are rendered invisible while they are alive and invisible in their death,” said Irwin Elman, Ontario’s independent advocate for children and youth. Elman was unaware of Justin’s death until informed by the Star.” In another story, we learn that Elman has just won the right to be promptly informed when children (with or without disabilities) die in the care of the children's aid. It's taken seven years of advocacy.
-a horrifying report on the daily use of physical restraints and two preventable deaths, in an American for-profit residential program operating in four states, for youth with severe developmental disabilities, including autism. “Many complaints have centred around the company’s aggressive use of mechanical restraints, such as leather cuffs, chairs with straps, and a ‘wrap mat’ akin to a full-body straight-jacket. Such tactics, records show, have resulted in broken arms, collarbones and jaws, knocked-out teeth and cuts needing stitches.” Most recently a 14-year-old girl died there after being tied to a bed, and then a chair, while vomiting as much as 30 times all night.
Read our BLOOM interview earlier this year with Sara Ryan.