A new study was published this week that focused on information gathered during interviews with the family and caregivers of children who had medically complex needs aged 18 months right up to 18 years. It was published in the Journal of Paediatrics, and 30 families took part, many of whom sought medical care over 20 times a year due to the nature of the disability of the child. As NDIS providers on the Gold Coast, we do often see the problems our clients have accessing medical care, and It’s even more difficult when we are dealing with children.
A Myriad of Issues
During the interviews, the caregivers and parents reported a variety of different issues. A lot said that the doctors talked to the caregivers rather than addressing the children; some record times when they were refused medical care because of the disability, while others said they were basically told that treatment was pointless because of the disabilities that the child had. Some of the accounts make for difficult reading and leave you feeling angry on behalf of the patient and their families. One mother said that she was told by medical professionals that it was pointless treating her daughter’s cancer, even though it would be likely a success. She said, “They didn’t treat her like she was really alive. They absolutely looked at her as if she was a vegetable and completely nonresponsive, which is not the case.”
Shocking Treatment
Another mother spoke about an incident in which she was talking to a doctor about reading books to her children. She said, “The doctor said you can read to her if it makes you feel better, but she’s not really learning, and she’s not really responding like other kids. She responds like a dog.’ That’s literally what he said. Those were his words, and you think this is the clinic for people with special health care needs.”
Validation and Awareness
The study was led by Dr Stefanie Ames, who is from the University of Utah Health, where she is a critical care physician. She said that “Our goal was to validate families’ experiences and bring awareness to the issue. Recognising the problem is the first step.” Reviewed by several other doctors, including Dr Stacey Cook, the comments made were ‘emblematic of what’s happening more broadly’ They said, “We believe that the disheartening findings presented in Ames et al. are true and generalisable. Throughout our training and careers across institutions in all US geographic regions, we have repeatedly heard derogatory language used when paediatric providers present and discuss (children with medical complexity).
More Training Needed
One thing everyone agreed on was the need for better training for medical providers when it comes to dealing with children with disabilities and complex medical issues. Another doctor had referred to a child as a train wreck kid, which is clearly unacceptable use of language. Dr Nancy Murphy of the University of Utah said, “I believe that all health care providers choose this line of work because of the common goal of helping those in need. Yet when providers lack the knowledge, experience, or resources to render care, we tend to shy away from situations. This tends to happen without our awareness, and this research brings this issue into clear view.”