Health and Disability Commissioner’s report highlights how young man gained 20kg and died six months after admission to care home

The Health and Disability Commissioner has investigated the death of a young man who had Prader-Willi syndrome, a genetic disorder that sometimes leads to an insatiable hunger.

A young man sent to live in a care home gained 20kg in weight within six months of his admission, and then died.

The man, 20, had a number of conditions including Prader-Willi syndrome (PWS), a genetic disorder that causes cognitive impairment and sometimes leads to an insatiable hunger.

While at the home, there were a number of “food incidents”, including when he drank all the milk in the residence.

He was also allowed “inappropriate access” to high-calorie foods.

His parents later found a receipt for an “enormous” Indian takeaway ordered about 10 days before he died.

An investigation has found that staff of the home had never been trained in how to look after the man and manage his condition.

Instead, they were left to learn about Prader-Willi syndrome from information kept in “a pink box in the office” labelled PWS, an inquiry has found.

John Taylor reviewed the man's care following a complaint to the Health and Disability Commissioner. Photo / Grace Odlum

Leading disability advocate John Taylor, who has 37 years of experience in the sector, conducted a review of the man’s case for the Health and Disability Commissioner (HDC).

He found that the care given to the young man, who was referred to the residential home from the justice system in November 2022, when he was 19, “severely departed” from accepted standards.

“[Mr B] entered the justice system because of his own actions. He spent over four months being supported in that system with no apparent ill effects,” Taylor said.

“Within six months of support with [the provider] he was 20kg heavier, pre-diabetic and then passed away due to becoming ill, most likely from something he ate causing sepsis exacerbated by pre-diabetes,” he said.

“His symptoms weren’t noticed until it was too late to save him.”

The man’s death in hospital in May 2023 followed a multi-organ failure, with diabetic ketoacidosis triggered by an infection, which in turn appeared to have been caused by the man ingesting something which had perforated his gastrointestinal tract.

His mother complained to the HDC that the provider and its staff did not monitor and care for her son adequately and did not manage his PWS.

While the complaint was being investigated, the provider admitted that it had breached the part of the Code of Health and Disability Consumers’ Rights which guarantees that people are treated in a way which minimises potential harm.

“The peers I consulted unanimously agreed that the support severely departed from the accepted standard, and they were dismayed that these departures could happen to the extent that they did and with the outcome that occurred,” Taylor said.

Deputy Health and Disability Commissioner Rose Wall has now referred the man’s death to the coroner, and the care home provider to Work Safe NZ, to determine if further action is called for.

The man’s identity and the name and location of the care home have been redacted from the public findings in the case. The man is referred to as Mr B.

Wall accepted Taylor’s advice that the severe departures from the accepted standard of care stemmed from the care home’s poor systems, and inadequate staff oversight and support.

However, she said no particular individual involved in the man’s care should be blamed.

Deputy Health & Disability Commissioner Rose Wall found the care home provider had breached the code of health consumers' rights. Photo / HDC

“The provider should have had robust policies and procedures in place and should have provided training, support and oversight to its staff members in order to provide a supportive and safe environment for Mr B,” Wall said.

“I find that the provider did not provide services to Mr B in a manner that minimised harm to him or optimised his quality of life.”

She found that this breached the code of health consumers’ rights.

Wall told the care home to write an apology to Mr B’s family, audit the care plans for all its residents, revise its procedures for inducting and training staff, develop guidelines on how to write records, and conduct a comprehensive review of daily notes and shift handovers for residents under specialist care.

She recommended that the provider provide further training to its staff.

Ric Stevens spent many years working for the former New Zealand Press Association news agency, including as a political reporter at Parliament, before holding senior positions at various daily newspapers. He joined NZME’s Open Justice team in 2022 and is based in Hawke’s Bay.