To read on ABC (Australia) website:
People with intellectual disabilities twice as likely to suffer preventable death, study finds
When Maureen McIlquham’s daughter Michelle was discharged from hospital on a cool autumn night in 2009, she never imagined the 28–year-old would be dead in the family home just hours later.
« It’s got to stop. If something doesn’t change then more people are going to die and young people are going to die, » Maureen McIlquham told 7.30 as she held a photo of Michelle.
Like an estimated half a million Australians, Michelle McIlquham had an intellectual disability.
Her mother believes that fact influenced the doctor who discharged her.
« [The doctor] put in her notes, on her discharge notes, that Michelle had a temper tantrum, that was more upsetting, that she wasn’t sick, she had a temper tantrum, it was because she had an intellectual disability, » she said.
Michelle was sick with an ear infection, and was acting out of character.
The young woman, who loved singing and dancing, was barely able to speak.
She was rocking back and forth on the floor of the hospital, covering her ears and screaming.
« I said, can’t she stay, she needs to stay, she needs treatment, I thought the doctor would say yes, I was worried about her and it was a hospital, » Maureen McIlquham said.
« Eventually the doctor passed through and said, ‘oh, you are still here?’, she said ‘do you want security to help you out?’ I just turned around and the security guards were there. »
Seven hours after leaving the hospital, Michelle McIlquham stopped breathing at her western Sydney home.
« They tried to revive her, but they couldn’t. They couldn’t do anything, she passed away a few minutes after. »
For eight years Maureen has been tormented by the thought her daughter’s death was avoidable.
The coroner found staff didn’t intentionally discriminate, but did attribute some of her behaviour to the fact she had an intellectual disability, instead of a serious illness.
Preventable deaths twice average rate
Sadly Michelle’s case isn’t isolated.
Research released in the medical journal BMJ Open today reveals a disturbing pattern of unnecessary deaths in the Australian health system.
Researchers at UNSW found people with an intellectual disability are twice as likely to suffer a potentially avoidable death compared to the general population.
« We found that one in three deaths in people with an intellectual disability was from a potentially avoidable cause, » psychiatrist and lead author Julian Trollor told 7.30.
« That is, a death that could have been prevented through individualised health care or through our normal health care systems or hospitals. »
People with an intellectual disability experience a large range of potential risk factors for early death, including heart problems, high blood pressure and obesity.
« The reality here is that the proportion of deaths from preventable causes was over double that in the general population, so we feel this is quite a significant maker of a major health inequality for people with an intellectual disability. »
His research also revealed people with an intellectual disability have an average life expectancy of just 54 years.
That’s 26 years shorter than the general population and, in part, it’s due to problems accessing health care.
« Firstly, health services are rarely equipped to meet the needs of people with intellectual disabilities and, secondly, health professionals are rarely trained in this area, » Professor Trollor said.
« In addition to this we know that people with an intellectual disability will often experience communication difficulties in consultations, often a person with disability struggles to be enabled to be part of the conversation, struggles to be included in decisions around healthcare, and struggles to communicate their health care needs to the person they are seeing. »