Today is the last day of the first week of the #DisabilityRC hearings on health care.
We'll once again be tweeting along all day.
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disability.royalcommission.gov.au
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the #DisabilityRC has now begun.
We will be hearing from Erin Sheehy and Christine Regan.
Erin & Christine will be talking about their experiences in the health care system.
Christine is giving us some background to Erin's schooling. Erin then went to work at a number of job.
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Erin has been active in dance and music, participated in sports like swimming.
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We've now moved on to hear Erin's story from birth. Eastman notes that Erin may leave at some point due to some of the topics that will be discussed.
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Chrsitine talk about when Erin was born, saying that when she was born the room was quiet and the doctors whisked the her away from the room.
Christine didn't realise how different this was until her son was born 3 years later.
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Christine was told that Erin had Down Syndrome.
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'
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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.
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Erin had the operation at 20 months.
Christine talks about the difficulty of seeing Erin a small baby being poked and prodded in preparation for the risky surgery.
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In her adolescence, Erin was taken to the GP with a skin condition.
The doctor suggested that she not wear underwear for 3 months.
Christine said she is 15 year old girl, who travels to school on buses and wears a uniform like any other girl.
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The GP left the room angrily at Christines refusal to his suggestion.
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At another time, when Erin had made the decision that she wanted a procedure, Christine agreed and they went to see the specialists.
The surgeons didn't acknowledge Erin, almost as if she wasn't in the room.
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Christine now tells us about Erin's stroke.
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'
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They were then told that Erin had a massive stroke, and had lost control of her bodily functions, and it seemed her entire memory had been wiped.
She didn't recognize Christine
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Erin has now left the hearing room.
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We're now hearing a story of aout 3 days after the stroke.
A young doctor came to Christine and said they had Erin's pain under control, and that Erin could be discharged.
Chrsitine knew this wasn't right.
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She pushed the doctor about their plan to help Erin in recovery.
She asked what they would do for any other 25 year old woman.
The doctor responded 'She has down syndrome, how hard are you going to try'
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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.
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The family was told that in rehab Erin would receive physiotherapy, occupational therapy, speech therapy, and other supports in accordance with stroke protocol.
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Erin was supposed to have several physiotherapy appointments every week, but after the first one they were not followed up.
Christine talk about being 'that mom'
saying she wears hat badge with pride
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Some of the nurses and doctors were supportive and helpful, and helped advocate for Erin to receive more support.
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One of the goals was to help Erin get back to work. Christine and Erin were told that no help was available, they didn't have the facilities.
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Erin is now back in the room.
We'll now hear about the rehabilitation journey after Erin was able to return home from the hospital.
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Erin has decided to leave the room once again, which is more than valid.
Christine continues to talk about the rehabilitation.
Christine decided to take rehabilitation into her own hands.
Erin didn't like doing excercises by herself.
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The family struggled with finding affordable private health insurance.
Their family helped pull together money to help Erin's rehabilitation.
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Erin loved music. Her father, being a musician, reached out to a music centre at the University of Western Sydney.
Erin began music therapy 3 times every week, and she loved it.
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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.
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Christine talks about how doctors treated Erin throughout her recovery. She says many treated her a job, or didn't acknowledge her.
She also speaks of times where doctors only spoke directly to Erin, and would ask Erin for permission to ask Christine questions.
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Erin is now in mostly good health.
She worked at a coffee shop, which she loved, and still has a lot of energy.
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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.
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Christine talks of Erin being prescribed low-dose contraceptive pills as a young women (as many other young women are).
She notes a few other cases of young women with down syndrome who also took low-dose contraceptives and had a stroke
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She called for research into how medications affect people with down syndrome differently.
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She also calls for better training in health professionals, something we have heard many times this week.
Exposure and understanding of people with intellectual disability andcomplex needs is essential.
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Eastman asks how we can include Erin, and people with intellectual disability, in the #DisabilityRC.
Christine says what she finds most important is to get to know people more.
She also notes the need to talk to the experts- people with intelelctual disability and with lived experience.
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Christine clarifies that she relies on doctors for their expertise, and advisors in Erin's health.
She speaks about how the GP knows to speak to Erin directly, and that doctors need to present options and have a discussion.
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She's talking about the NDIS and support she has gotten.
She mentions that they privately employed an independence worker to help Erin find what she wanted to do.
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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.
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We'll now be taking a quick break for about 20 minutes.
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The hearings will now resume.
We'll be hearing from the next witness, Lorraine Clark.
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Lorraine is giving evidence in regards to her daughter Gabrielle.
Gabrielle is 44 and lives with Down syndrome.
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Gabrielle was born, and Lorraine said at first they were taken aback.
Her husband gathered their friends and family, and said this is our daughter, and this is how we want you treat her.
They celebrated their new baby girl
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Gabrielle had a few health issues as a baby, whopping cough and bouts of pneumonia.
Lorraine said they had a very good pediatrician, who was concerned that Gabrielle was taking so many anti-biotics.
They were referred to an iridologist and a naturopath.
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Lorraine says that Gabrielle was the first person with Down syndrome to attend a mainstream school.
She attended the local school, and walked to school every day with her sister.
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She was athletic and joined the local sports club. She joined several swim clubs, and began competing.
She's competed in the Pan Pacific Games, where she competed for NSW, and at overseas bowling competitions.
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Gabrielle moved around from school to school for a bit, until it was time for her to go to high school.
The head master at her school said he would recommend she goes to a mainstream high school.
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When she was 13, she began to gain a lot of weight and was diagnosed with Hashimoto's disease after three months of tests.
Lorraine says that except for this, her health in her teenage years was the best its ever been.
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Gabrielle then got a job, where she worked for quite a few years.
She worked 5 days a week, and had a great rapport with everybody,
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A new manager came into the workplace, who made it clear they did not understand or want to work with Gabrielle.
Gabrielle decided to resign after 6 months of bullying.
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Gabrielle has become an advocate for people with Down syndrome.
She's spoken at conferences and forums around the world, and says 'people with Down syndrome are human beings just like everybody else'
'we laugh, we cry, we love life'
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Eastman warns that the following may be distressing.
Gabrielle was at the Asia-Pacific special Olympics game doing some work. She was delivering a speech when she passed out and collapsed,
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She was in the cardiac unit. Doctors said they thought it might be her thyroid, and increased the dosage in her medication.
Lorraine says she noticed a change in personality, she was anxious, depressed, and lost her self confidence.
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Gabrielle was then prescribed anti-depressants. It changed her, she wasn't herself.
Her parents took her to counsellors and specialists.
She continued to have panic attacks.
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In 2017 she was taken off the anti-depressants.
A few months later she collapsed again. The family was referred to a neurologist,
He said that although the scans were clear, there was a 50/50 chance she had developed epilepsy.
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They were given the option for medication, which came with a long list of side-effects.
Lorraine and her husband were not convinced it was a seizure, and thought it was a great risk.
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In 2018, Gabrielle collapsed again. She was taken to the hospital where they did a CT scan, and suggested they go back to the neurologist.
After some more treatment, Lorraine says her personality completely changed. She became aggressive, would lash out.
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A few months later she had another seizure. Her medication was changed once again.
Lorraine says her personality changed once again, she became more aggressive, and would have to be held to stop her from harming herself or others.
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Lorraine explains the process of easing-on and off different medications.
She says that Gabrielle was confused, upset, and that there was no period throughout these transitions at which she wasnt.
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After a while, they made the decision to take her off all medication.
They noticed improvements in her behaviour, and she became more negaged.
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On a day in 2019, Lorraine and her husband were woken up to Gabrielle crying. They found her crying, wet, shivering, and with a head injury.
She had had another seizure.
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Later that day, Lorraine had taken care of Gabrielle, and she was watching her favorite shows.
She then had another seizure.
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She then was taken to the hospital, where she was told she had to have an ECG. The family was told to go right away.
They took her and Gabrielle seemed fine, she was communicating and engaging.
Lorraine and her husband were told to go have coffee.
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They then went home.
The next morning they go to the hospital to check in, John is told that they can't go in, Gabrielle is getting a procedure.
Lorraine says she went in anyway.
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There was a male nurse who was changing the catheter for Gabrielle, and she was quite distressed and kept telling him to stop.
She wasn't comfortable and kept trying to pull out the catheter screaming "don't" and "no"
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She was sobbing and she was traumatized, and didn't want any of the medical staff near her.
Lorraine mentions that she says she doesn't think anyone explained to her what the procedure was or what was happening.
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Gabrielle was then diagnosed with rapidly proressing Alzheimers.
There was some questions to this diagnosis, including the fact that the MRI was clear along with other scans.
They never got a follow up
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Gabrielled needed a lot of care, and had to remain in the hospital.
Caseworkers and health professionals then suggested that Gabrielle be transferred to an aged care facility.
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They were offered no other options, and an aged care was brought in for an assesment.
Lorraine says she believes they transferred her out too quickly. She continued to have severe issues with her health.
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Lorraine talks about going in every day to see her daughter.
She still believes the diagnosis may not be correct.
She says it's panful seeing her daughter in an aged care facility, she's younger than other residents by 35yrs.
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Gabrielle is still quite distressed and agitated at the facility.
Her parents still take her to the beach, where she used to go when she needed to think about things.
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Lorraine talks about being an advocate for Gabrielle.
She says that she wants to make sure she's advocating for her, not for herself and her own feelings.
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Lorraine brings up training of health professionals.
This has become a strong pattern this week.
She says people need to learn, understand, and listen to people with intellectual disability.
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Talking about her hopes for Gabrielle, Lorraine says the staff at the aged care facility are respectful, patient, and listen to her.
She says that regardless, she thinks she needs to be around people that are younger, but that no options are presented.
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Sackville thanks Lorraine for sharing her and Gabrielles experiences.
We will now adjourn for lunch until 1:30pm
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The #DisabilityRC is resuming with witness Kim Creevey. We'll be tweeting from this account and @gdevera is also joining us this afternoon.
disability.royalcommission.gov.au
@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.
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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.
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He had a strong sense of humour and empathy. He would cry at sad movies, and he loved theme parks and rollercoasters
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Everyone in Harry's life was very supportive of his parents adjusting activities to make sure he could participate in everything.
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Harry was quadriplegic and nonverbal as a result of Murray Valley Encephalitis, which he contracted at age three.
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Counsel Assisting Ms Eastman SC is now asking Kim some questions about bias against Harry in the healthcare system.
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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.
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Harry's parents got rid of the doctor, and the breathing problem turned out to be related to acid reflux, easily treated.
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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.
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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."
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The conversation has moved to the final days of Harry's life, when he was hospitalised for pneumonia.
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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.
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When the alarm went off on Harry's oxygen machine, nurses would walk in and lower the threshold on the alarm!
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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.
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KC: A series of people made the choice that Harry wasn't going to get the standard of treatment that everyone else gets.
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ICU staff questioned both parents individually about their "plan" before putting in the effort to try and save Harry's life.
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When Kim was told Harry's respiratory muscles had weakened beyond recovery, she felt the doctors had all given up on him.
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She feels they weren't given any options beyond withdrawing treatment.
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Harry passed away on October 1st, and it was "far from gentle." There were delays in sedation compared to another similar death Kim has witnessed.
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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.
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Harry would have had a shortened life regardless, but he didn't need to die when he did.
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Kim is advocating for increased and improved training for healthcare staff to help them see people with disability as people.
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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.
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Another thing that would help to have an advocate for patients with disability at the hospital - Kim saw many people arrive unaccompanied.
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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.
cid.org.au/resource/my-he…
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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.
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Harry only lived 18 years but they were full and happy.
"Harry was going to die, but we're all going to die." It was no reason not to do everything possible to help him.
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The Counsel and Commissioners express their sympathy for Kim's loss.
We're now adjourning to change witnesses.
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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.
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She also worked at NSW Department of Family and Community Services (now the Department of Communities & Justice) for 7 years.
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Sometimes people stare at her or bully her. She says she got good advice to think "I'm OK, but you're mean" when this happens.
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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.
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When Tara shuts down and gets quiet, she says her mum can "read her like a book" and helps talk her through everything.
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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.
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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.
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Tara recently started using the My Health Matters folder mentioned earlier.
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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.
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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.
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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.
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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."
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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."
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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.
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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.
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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.
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That's the end of the hearings for this week. We'll resume on Monday morning at 10am.
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