Carers say health procedures are made more difficult because of doctors’ lack of understanding
Sun 31 Mar 2019 18.00 BST
Last modified on Sun 31 Mar 2019 18.01 BST
Seven-year-old Ryan has Down’s syndrome and was born with a multitude of other medical conditions, including three holes in his heart and a diagnosis of leukaemia at the age of 13 months.
“It’s amazing how tough he is, how resilient he is,” Ryan’s mother, Rebecca Kelly, said.
“No one looking at him today would think he’s ever been through anything let alone the number of things he went through.”
Kelly said Ryan has been through many “incredibly traumatic” medical procedures, made more difficult because of a lack of understanding about his different needs by some doctors.
Their experiences have formed a case study for a push by the New South Wales Council for Intellectual Disabilities for $50m of federal measures to improve the medical care of patients with intellectual disabilities.
It’s supported by more than 120 current and former heads of medical and health organisations, colleges and peak bodies, including the Royal Australasian College of Physicians.
The issue, said the council’s senior advocate, Jim Simpson, is primarily a lack of training among doctors, who receive only 2.5 hours of specific training in the average six-year degree, and nurses, who receive none.
In the past seven years of her son’s life, Kelly came across an “astounding” amount of misconceptions among medical staff, and a lack of awareness of the complex trauma suffered by Ryan which was exacerbated by the frequent medical treatments.
She realises now that he should have been pre-medicated for every procedure, but that has only recently been happening. Of three procedures last year, two saw Ryan pre-medicated and the procedures had “no impact on him whatsoever”.
But during a third, their repeated request was not relayed to the anaesthetist, who also had no idea he wouldn’t be treating a “typical seven-year-old”.
“Instead of stopping at that point and saying we’re just going to slow down… we were just pushed straight through,” she said.
“He lost a whole term at school effectively because of the fallout from that.”
The council is calling for a three-pronged approach: a $3m national inquiry, an enhanced training curriculum costed at $8m over three years and the establishment of a primary health network program specifically relating to intellectual disabilities, which would cost $14m a year.
Such programs already exist to assist health workers treating patients with mental health issues, with alcohol and drug issues, patients of Aboriginal or Torres Strait Islander descent, and immunisation programs.
“We’re looking for 90 intellectual disability health workers across Australia to be a training and consultancy resource to GPs and help link people with intellectual disability to doctors and other professionals who do understand how to work wth them,” said Simpson.
“We’re there for the people obviously but what we’re pointing out is there are potentially large savings in health care and NDIS budget to be made from improving this health care.”
Around 450,000 people in Australia have intellectual disabilities and the Council is hoping the proposed measures in the Our Health Counts campaign would prevent further trauma, misdiagnoses and deaths.
Recent studies have found rates of potentially avoidable deaths up to three times higher among people with intellectual disabilities.
“People with intellectual disability die from causes similar to other Australians, but they die earlier, and more likely from potentially avoidable causes because they experience multiple barriers to quality healthcare, and because health professionals and services are not equipped to meet their needs,” the chair of intellectual disability mental health at the University of NSW, Professor Julian Trollor, said at the time.
A spokesman for the federal health minister, Greg Hunt, said the department was meeting with Simpson this week to discuss proposals and design a roundtable “to consider the best approach to supporting the health of this vulnerable population”.
“The roundtable would bring together key stakeholders, such as the AMA, RACGP, PHNs, CHF to discuss the barriers and solutions to best support improving the health outcomes of people with an intellectual disability,” he said.
A memory that remains fresh for Ryan’s mother is a doctor trying to find a vein to take a blood test when he was a newborn. Ryan was unable to cry, and the doctor remarked that the needle was “not even hurting him”.
“As a mother I could clearly see my newborn baby was in pain,” she said.
Kelly said the key to making life easier for people like Ryan is training around intellectual disability but also “respecting the word of advocates”.
“If a parent is sitting there saying you need to stop, you need to slow down, then stop, then slow down, and listen.”
The shadow health minister has been contacted for comment.