Christine says she was alone for days and felt she ahd no support. Christine and her husband were offered the option to remove Erin to 'a place she can be looked after'
Erin continued to live with a heart condition. Christine and her husband made the choice to get her the procedure she needed, against the wishes of the pediatrician.
They found Erin at about midnight, and noticed something was wrong. They took her to the hospital, and were told 'Don't wrory, 25 year women don't have strokes'
Christine says that if she hadn't stood up to the doctor, and pushed for Erin to be placed in the rehabilitation program, the outcome would have been incredibly different.
The family was told that in rehab Erin would receive physiotherapy, occupational therapy, speech therapy, and other supports in accordance with stroke protocol.
Sackville asks about the need for private health insurance, and what would be covered that she was using.
Christine says that the speech therapy for Erin was very expensive, the the outpatient speech therapy as part of the hospital rehab wasn't followed up on.
Christine talk about the struggle with doctors not being able to see past Erins down syndrome. She says sometimes they make social decisions, not medical ones.
We're wrapping up, Sackville thanks Christine and Erin for sharing their story.
Christine mentions that this is Erin's story, and they had previously discussed what was to be shared.
Christine made a point to get the consent from her daughter to share her story.
@gdevera Kim is giving evidence about her late son Harrison, or Harry. She wants to talk about his life and also the circumstances leading up to his death.
Harry liked to play and climb trees, ride motorbikes and horses, and push his boundaries like a normal kid. He was a quietly determined little boy who liked to do things for himself.
For example, a pediatrician was quick to suggest a breathing problem Harry was having was due to his disability. The doctor didn't want to do any tests, and suggested where Harry could hear him they were wasting money keeping him alive.
On another occasion, when Harry had a hairline fracture, he was clearly unhappy with his arm in a sling but the doctor ignored it. Later it turned out the fracture separated.
When Kim asked about another issue with Harry's cast (a pin was sticking out), another doctor didn't seem to care about any pain or effects on Harry because "he wasn't going to play piano anyway."
Staff at the hospital did not take observations as frequently as they were supposed to - Kim and Harry's father Matthew had to repeatedly request checkups when Harry was distressed.
As Harry's primary caregivers, his parents knew how he was likely to respond and what his behaviour meant, but hospital staff were dismissive of this knowledge.
Harry doesn't fit into the reportable death criteria, partly because his death certificate says ABI and seizures before it lists the pneumonia and secondary infections. But he hadn't had any respiratory issues related to the ABI prior to the pneumonia.
She also wants hospitals to be proactive in asking about end of life plans at a time that isn't literally the point of crisis. For example, they could ask on admission.
The My Health Matters folder developed by @CIDvoice should be more widely used. It tells doctors important information about how a person communicates, which is essential for helping people understand what's happening and make decisions.
So many deaths are not reported to the coroner due to unconscious bias, like when Harry's death certificate said ABI. Kim believes there need to be mandatory reporting standards to prevent this.
The next witness is Tara Elliffe @elliffe_tara who works at the NSW ombudsman's office and is on the board of Down Syndrome NSW and several advisory committees. She likes coffee, overseas travel, visiting her nieces in Woollongong.
Disability doesn't stop her travelling and exploring the world. She lives with her parents, and would like to have her own space - still close to them, but independent, just like her brothers.
Tara's long-term GP (10-12 years) has an interest in disability, and talks to Tara straight, not just Tara's mum. She trusts her and thinks it's a good thing to have the same doctor for a long time. The doctor makes long appointments for her.
Tara prepares for her GP appointments beforehand, and writes down any questions she has. Sometimes she brings her mum, and sometimes she goes on her own. When her mum calls the GP they are on speakerphone so Tara knows what is happening.
She has a care plan which lists her history, medications, and specialists. She sees a dietician, a physio and a psychologist. Every two years, she reviews her care plan with her GP.
Sometimes, Tara needs mum or dad to help her make medical decisions, but sometimes she can make them on her own. She talks to her mum, dad and brothers about her decisions.
Tara didn't like the first cardiologist she saw because he spoke to her mum instead of her. They talked about putting in a pacemaker and she didn't like that idea. She didn't go back to that cardiologist.
When she went to the hospital with severe abdominal pain, there were a lot of different doctors and different tests and she felt like a yoyo. "My head was exploding from all the noise and different people."
A doctor tried to discharge her without looking at her. He spoke to her dad instead of her. Eventually she had an ultrasound - she appreciated the sonographer telling her "Sorry it hurts."
Tara had an operation and afterwards she was in a lot of pain. She tried to ask for painkillers but was refused until her mum and dad came and helped. It was a generally bad experience that she'd rather not repeat.
Tara's advice to hospital staff: Talk to me and not my parents. Have documents in Easy Read. Use pictures. Any disability training for doctors and nurses would be good, but especially with people with disability doing the training.
It would be good if people with disability could have a tour of the hospital when they are well, so they know what to expect if they have to go in an emergency.
Getting ready to live tweet the last day of the #DisabilityRC hearing into the use of psychotropic medication and chemical restraints.
It's been a tough week, so if you need to mute this thread of the hashtag, we do understand.
If you feel impacted by anything you read here today, remember you can always call Lifeline on 13 11 14.
You can also call the National Counselling and Referral Service (specifically set up to support people impacted by anything related to the #DisabilityRC) on 1800 421 468.
We have been very disappointed so far with the lack of people with disability giving evidence at this hearing, and we'd like to start this thread today by sharing three blogs written for us by people with lived experience of the mental health system. #DisabilityRC
Getting ready to live tweet the #DisabilityRC again this morning. Thanks to everyone following along this week. Some of the testimony is confronting to hear, and we appreciate everyone engaging with us this week.
As always, if you need support, you can reach Lifeline on 13 11 14.
You can also call the National Counselling and Referral Service, set up to support anyone impacted by anything related to the #DisabilityRC, on 1800 421 468.
@FrancesPWDA is live tweeting this morning's #DisabilityRC sessions. You can follow the thread here:
It's day 2 of the Disability Royal Commission into "the use of psychotropic medication, behaviour support and behaviours of concern". We'll be live tweeting from here again today using the hashtag #DisabilityRC
We heard some harrowing testimony yesterday and we encourage everyone to look after yourselves as we go through this together.
We invite you to follow along on the journey with us, but also remember you can temporarily mute the hashtag or a thread if you need to. #DisabilityRC
@FrancesPWDA will be live tweeting for us from her account this morning. Check out the thread here:
The 6th Disability Royal Commission hearing on "the use of psychotropic medication, behaviour support and behaviours of concern" starts today at 10am, and we will be live tweeting the proceedings from here.
We'll be using the hashtag #DisabilityRC if you'd like to join us.