Thread by @PWDAustralia

We're about to start livetweeting the second day of this #DisabilityRoyalCommission hearing on healthcare.

You can watch or listen here: disability.royalcommission.gov.au

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Please mute the tag #DisabilityRC if you'd like to skip these tweets.

For those following along, don't forget there are supports available if the evidence is distressing.

pwd.org.au/drc-hub/suppor…

And @FrancesPWDA will be tweeting this morning as well!

Content warning from Ms Eastman that upcoming evidence will be about the death of a child.

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The first witness is Rachel Brown. She is talking about her second son, Finley, who died in 2016. she wants to talk about his life and the person he was as well as his death and various interactions with the health system.

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https://twitter.com/FrancesPWDA/status/1229904172574576640

Ms Eastman asks if Ms Browne's nurse training included anything about working with people with cognitive disability. Ms Browne says no. "There's a chasm... lacking in knowledge", in terms of the education system preparing people to work with marginalised patients.

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Ms Browne says training is one-size-fits-all and most education about people with diverse life experiences and complex needs is self-directed.

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Her most positive experience in that context was as a rehabilitation nurse - she says the health field has many silos, and other parts of it don't benefit from the knowledge that rehab nurses develop.

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Ms Browne calls herself the custodian of Finley's story, and hopes she does him the justice of adequately telling his story.

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https://twitter.com/DRC_AU/status/1229907575723843584

Finley was a lovely and loved child. He was "a better version of us." He was funny, even when he was unwell. He was very particular about who he liked and didn't like. He was very proud of his school uniform.

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Apologies, it looks like that's meant to be spelled Finlay.

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Ms Eastman is talking to Ms Browne about Finlay's birth and diagnosis with Down Syndrome.

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Medical advice was quite negative - all about what Finlay wouldn't be able to do.

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One doctor told her that "it was okay because I was young and I could have more children."

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RB: With the birth of any other child, nobody tries to give you a blueprint of what their life will be like.

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Finlay was a healthy baby. Finlay means "fair haired warrior" and he lived up to his namesake every day.

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Ms Browne tried to be proactive about Finlay's healthcare, lining up specialists before they were needed. The family lived in Bathurst, but all the specialists were in Sydney.

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She echoes testimony from yesterday about poor communication between different medical professionals.

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Finlay was later diagnosed with autism, but the process took several years from when his mother brought up the possibility with doctors. His symptoms were dismissed as purely Down Syndrome related.

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The autism diagnosis ended up coming too late for most early intervention services, and it was hard to access allied health in a regional area. "You're left behind, so it impacts on their daily life."

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Ms Browne was determined to breastfeed Finlay as a baby despite being told it wouldn't be possible. There was no specialist help available - "I winged it."

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The first time she took Finlay to Emergency, age 12 weeks, it took a lot of effort to make them see that he was unwell and dehydrated and not just floppy because of Down Syndrome.

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Once he was admitted it was a more positive hospital experience, with nurses treating Finlay as a baby, not over-focusing on his disability. That gave Ms Browne more confidence. She says confidence in your child's medical care is so important.

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She's now talking about another Emergency experience in which she felt judged and dismissed by the doctor who examined Finlay.

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As a nurse, she talks about "walking a tightrope" of professionalism vs advocating for her child.

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She describes being treated as an "overwrought mother" who was wasting the time of Emergency staff.

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On another occasion, Finlay was in significant abdominal pain and distress and Ms Browne thought it might be appendicitis, but staff were dismissive. Discharged at 3am with no diagnosis, just told to wait and see.

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It was a source of great distress for Finlay to go to hospital in the first place, and it took a lot of effort to get him there. All those trips had a cumulative effect on his feeling of being safe/comfortable in an emergency department.

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20 minute break coming up.

Ms Eastman is now taking Ms Browne through the parts of her statement that are about blood tests and injections. People with trisomy 21 are at higher risk for thyroid problems, so Finlay had to have annual blood tests.

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https://twitter.com/DRC_AU/status/1229927884166270977

Finlay was scared of the whole process, the environment.

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If it's not managed well, the trauma of invasive testing is cumulative.

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Ms Browne is talking about reasonable adjustments that would have made engaging with pathology less traumatic for Finlay and for her and her husband as well.

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A positive experience Finlay had was with a dentist who took the time to let him get used to the environment and sitting in the chair etc, before she did the examination.

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Ms Browne doesn't want people watching to feel that they can't trust medical practitioners, to be concerned or fearful about accessing health. There are good people out there.

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She says there needs to be more education for healthcare staff to listen to parents.

She didn't realise how hard she was going to have to advocate for her child, and sometimes she feels like she failed.

"No mother should have to feel like that."

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Medical practitioners need to see people as individuals, see past their disability.

Emergency departments need to be more accessible for people with cognitive impairments - "it doesn't take much."

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Content note, we are starting in on what happened around Finlay's death.

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On that day, Finlay was in pain, vomiting, distressed. He hated vomiting, so that caused more distress. His mum put him in the bath to relax him. She realised how serious the situation was when Finlay had a bowel movement with blood in it. He said "please help me."

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He wasn't reluctant to go to the hospital this time - it was the first time he got into the car for it without persuasion. He said "I love you mum, I love you dad." Both parents could see how urgent it was.

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Finlay collapsed in the emergency room. It was the beginning of a long weekend. The triage nurse rolled her eyes.

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45 minutes later, they saw a junior medical officer, who didn't engage with Finlay - stood with his back to him. Ms Browne tried to introduce the doctor to Finlay and ask him to tell Finlay what was going to happen.

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CT scan showed a significant abdominal obstruction. It was going to need surgery. There was discussion about taking Finlay out of Bathurst to a specialist children's hospital. Ms Browne was led to believe an emergency helicopter transport was going to come.

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The transfer was delayed. There were no obvious signs anyone was doing anything to monitor Finlay or relieve his distress, and Ms Browne felt like everyone had already written Finlay off.

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By 5:30am the next morning, Finlay was taken to Westmead Children's Hospital for surgery. He stayed in hospital for the next 71 days until his death.

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There were 12 further surgeries. His liver and kidneys were shutting down. He was on a ventilator for a while. The staff at Westmead listened to Rachel when she said Finlay was in pain, they built rapport with Finlay and his parents. They got to know him.

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Finlay kept saying "mum, I want to go home."

As he got sicker, there were discussions about taking him home to die, but he was too unwell to be moved.

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She took him home eventually, after his death.

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Rachel wanted to understand what had happened. The hospital's investigation was delayed, and she made a complaint to the NSW Health Commission. She has also written to the Health Minister and pursued a coronial inquest, which she is waiting to hear about.

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She felt isolated until she saw a 7:30 Report about similar issues and made contact with @CIDvoice

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She is still quite distressed about the death certificate, which says that one of the causes of Finlay's death was his Down Syndrome.

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Chair Sackville thanks Ms Browne for sharing Finlay's story, and says they're all sorry for her loss.

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10 minute break now before the next witness.

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We are now resuming the hearing with the second witness for today.

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The witness is Toni Mitchell, appearing with her son Joshy as his carer.

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Toni is talking about Joshy, his schooling, and his love for books and music.

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Toni is talking about her experience at her first ultrasound after finding out she was pregnant.

She was told she was having a boy- before the doctor ran out of the room.

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She says the room suddenly became packed with doctors and professionals who she didn't know.

She was told her baby had a heart condition, and she would probably miscarry over the next few months.

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She was given an appointment slip for a termination before the doctors left the room.

Toni says this set the tone for the rest of Joshy's life.

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Toni was told that Joshy would need heart surgery after he was born, and that they didn't expect he would make it.

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She says that the staff at the hospital were not prepared on the night he was born.

They hadn't prepared for the transfer required for his heart surgery.

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Toni says she was discharged and not able to stay while Joshy remained in the nursery.

Joshy was then transferred to Brisbane in critical condition.

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She talks about not being informed about what was going on, with Joshy being in critical condition and in a coma.

She was advised to pull life support, but fought not to.

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Toni talks about her experience one particularly unsettling night in which she was asked to leave Joshy to settle, but returned to find him without a nurse and not breathing.

He was resuscitated, and stablized.

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Toni talks about the following months in and out of hospitals, and the attempts to treat his heart condition.

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Toni talks about the need to see various specialists for concerns with Joshy's lungs and other issues.

Joshy's GP refused to refer him to these specialists at first, saying she would be able to handle it herself.

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Toni talks about an upsetting interaction she had with a doctor while taking Joshy to check out a skin condition.

When asked if she ever did anything about she responds 'I still believed in the system'

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She's now talking about the management the bowel conditions that Joshy was struggling with.

She talks of doctors dismissing the diagnosis, and being treatments that weren't helpful and at times caused more pain.

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Joshy went through a series of surgeries and treatments before testing revealed he was misdiagnosed.

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Toni made the decision to switch to the private health system.

She speaks about how she felt that Joshy was being treated as a joke, and not being taken seriously. 'He was in so much pain. He was having constant surgeries and medicine and nothing was working'

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She speaks of nurses helping her advocate for Joshi, and listening to what Joshy actually needed.

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The hearing will adjourn for lunch until 1:45pm.

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We would like to remind everyone reading and watching along to be mindful of your wellbeing.

These topics are difficult, and we need to take care of one another.

If you need support we have resources here:
pwd.org.au/drc-hub/suppor…

As part of our #DisabilityRC Jargon Buster we've made a Healtchare terms page for things that may come up over the next two weeks of hearings, and throughout the commission.

pwd.org.au/drc-hub/jargon…

And we're now resuming with the session.

We begin with Toni speaking about a terrible experience at a particular hospital.

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Toni recounts the story of Joshy going into theater.

He was crying while going anaesthetic, and when he was in recovery was distressed and disoriented.

Toni then found that they had not performed the procedure they had said they would

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Joshy was in incredible pain, disoriented, and so dehydrated he could not speak.

Toni was handed a brochure for Ryan's Rule, which is a series of steps which could be taken when a patient or carer believes that proper care has not been taken.

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Toni continually had to advocate for Joshy to get fluids and proper pain medication, and often had to correct and remind the staff of what Joshy needed.

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Toni says it wasn't uncommon for doctors to perform procedures that were not what was previously discussed with her.

This left Joshy in surgery after surgery to correct previous procedures.

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She says she began doing research and learning things on her own, as doctors would often fail to explain things clearly.

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We're now hearing about the difficulties of transferring Joshy from his care with children's specialists after he became an adult.

Toni notes the lack of access to records from his previous specialists, except through FOI.

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She also notes the refusal of some specialists to refer Joshy to his adult specialists, and the long, over-drawn process it has been.

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Toni says she wishes there was someone in the hospital, on the inside, who would advocate for Joshy and his needs to help them navigate the system.

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She also notes the need for more help with pain management, and the lack of support for Joshy in managing his extreme pain.

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We're now hearing about how Toni and Joshy run a class at the hospital every year, teaching the young doctors about down syndrome.

They educate them on the treatment of people with down syndrome and other disabilties, and share their experiences.

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They use this class to teach the young doctors to look beyond a persons disability, and take their health concerns seriously.

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"I shouldn't have to be doing this. Joshy should be treated as an equal, as worthy, as any other person should be"

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"The training is insufficient. They don't know disability"

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Toni speaks about doctors who are not doing proper reporting, or recording the correct things.

They're not listening, and it affects the care that Joshy gets.

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"The hospital system made me this mother" says Toni about the mother she had to become in order to get Joshy the care he needs.

She became the mother who fights, yells, corrects, and insists to doctors and nurses for her son to be treated.

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We're now adjourning for 15 minutes before the next session.

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And we're back after a slightly extended delay.

It seems that we may be deferring this session due to an application made by New South Wales for a non-publication order for an institution named in witnesses submission.

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The #DisabilityRC will be wrapping up for the day, and we will be back tomorrow at 10am.