Before we proceed into the wrongs, we want to acknowledge the rights
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Thanks to:
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The amazing team at Bush Road Medical Centre. Always kind. Always accessible.With the core ethos of "I can't help you with your condition but I can advocate for you". The practice nurse with the best counselling skills!
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The unsung héros of hospitals - the ward ancillary staff. Redshirts at NDHB. From always making sure the bed was made up to feeding Ruby's goldfish. They 'saw' Ruby.
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The nurses who were kind are caring and wanted to learn and take guidance from Ruby. Particularily unfamiliar procedures. Ward 16 2018 you rocked! They greeted Ruby with warm smiles on her return to the wards and when possible advocated for her.
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Ruby's NDHB Gastroentroligist and some of the management team, who would learn that Ruby liked to banter and tease them when they took the time to come and see her. They became flexible within the hospital protocols to work alongside Ruby to accommodate her night escapes home....For their compassion and desire to change the broken system. Please don't stop trying!
Examples of biased care
The message we want to pass on by sharing in detail incidences of professional bias and unprofessional attitudes...is that collectively all these actions add up ...like the Swiss Cheese model used by hospitals, where all the holes aline and the patient falls through. And usually with the consequence of a devasting outcome, as in Ruby's case. When you have members of a 'team" not performing their role adequately, where they have been entrusted to perform duties but don't. the impact is huge.
And even more disturbing/upsetting is those who have dropped the ball will deflect it back onto the patient as their fault rather than take responsibility.
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Bullet pointed are examples of SOME of the substandard health professional involvement with Ruby’s care at NDHB and including supporting documents to show the level of professional bias and unprofessional care.
Re-reading emails and messages rips the bandaid off and I feel the same pain and frustration I did when in the moment.
Re-reading the correspondence from myself to health professionals I am astounded that the subject thread was so consistent throughout 2018. I am constantly trying to explain to her ‘team’ that Ruby doesn’t have an eating disorder, isn’t refusing treatment, nor has a drug addiction, and basically give her respect and listen to her.
I am angry reading them. It really is beyond reason that such attitudes from clinicians existed and that health workers in support roles impacted so catastrophically to the outcome of Ruby’s journey.
It is beyond reason that she was bullied and harassed right up to her discharge. I witnessed these persons come into Ruby’s room, not listen to a word she said, and then sanctamonously walk out as though they’d tried! This is professional bias and utter ignorance!
It is not isolated to NHDB, it's prevalent within all the DHBs.
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DIETICANS:
This department held influence that was, in my opinion, beyond their skill base in dealing with Chronic illness.
Ruby and I thought how concerning, if this is the treatment she received, when she was able to speak knowledgeably about her condition...what happened to people who were not as confident or it was not part of their culture to challenge.
It was the beginning of Ruby’s professional bias in NDHB.
Ruby had already been battling Gastroparesis for two years when she moved to NDHB. A move made due to postcode lottery as she moved home for care which changed her DHB.
Had the issue of her not tolerating the feed formulas been addressed from the start, instead of dismissed as refusing to feed and increase rates, we could have seen a different outcome.
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In initial meetings Ruby was told who she was, her history with Gastroparesis and prior treatment were not relevant.
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Continued to use terms as “negotiate” in regards to increasing feed rates instead of listening to Ruby’s concern of intollerance to feeds which made it impossible to manage feeds.
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Treating Ruby as a patient with Anorexia....wouldn’t engage in converstations about Gastroparesis, its effects or its symptoms.
Interestingly was never offered help for anorexia either!
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Would not act on occasions when Ruby was saying nasal tubes had twisted back into her stomach. She just needed to increase feed rates.
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When Ruby had obvious fever/infection suggested dusting off machine.
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When she first started on TPN (direct feed through vein), Ruby expressed concern it was tickling her heart, belittled in front of a Medical team (who had not previously met Ruby ) when Ruby was telling them her concerns and symptoms. Ruby was to calm down (with arm actions) when she got teary as no one was listening. This was 30 mins post op!!
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X-Ray confrimed line had moved 8cm and was sitting on heart. Hence the tickling! If Ruby had continued with her feed it wouldv’e been fatal.
Dietican returned to the ward the next day and harassed Ruby. She was agrieved that Ruby had told her she was wrong and that the line was tickling her heart. The only thing that changed a fatal outcome was the bravery of a young intern Doctor, who had seen the exchange of eye rolling between the dietican and medical doctor. She responded to our request and ordered an x-ray and the findings showed again, Ruby knew her body. She had already had 5 nasal tubes, each time she felt it had coiled back into her stomach the same Dietican had issue that she was 'refusing' to feed. Yet the x-rays confirmed it every time. Instead of apology, Ruby received aggression.
​I came back into the ward to find Ruby being comforted by strangers because of what had been said.
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Witness statement opposite from another patients visitors who were in the ward when the Dietician returned to talk with Ruby.
On ward Dietican:
MENTAL HEALTH TEAM:
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RUBY AND I WOULD SAY " IF YOU DIDN'T HAVE A MENTAL HEALTH ISSUE BEFORE YOU SURE WOULD NOW"
The mental health team had little time engaging with Ruby but the impact of that engagement was damaging.
It was apparant professional bias was again involved with her care with members of the pain team and mental health.
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Mental health liaison nurse entered Ruby's room when Ruby had been talking about "been done," being so exhausted she had no fight left in her. Her immediate reaction was to say she will go get the Crisis Psych team. We explained we were just having a discussion. It was not a crisis moment but an intimate conversation. There was no further engagement. There was no compassion. No empathy.
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Ruby was harassed about using Cannabis. Which she was very open about using medicinally and discussed its medical benefits.She was constantly having this use used against her...even when 10mg of Ketamine didn't affect her and she couldn't tolerate opioids etc. The nurse and pain team doctor went to management in an effort to have Ruby discharged from hospital care. Even without discussion, referring her to a drug and alcohol counsellor.
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Insisting cannabis was cause of her symptoms...and again had not read any of the information, provided by us 7 months earlier, on the symptoms of Gastroparesis. Insisting she had CHS Cannabinoid Hyperemesis Syndrome.
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Ruby was methodically ticking off her list of things that needed to be in place prior to having her hickman line in place.ie dressings that would react to sensitive skin, feeds that she could possibly tolerate and care regimes. Ruby waited a month to see the Pallative care doctor who finally arrived 10mins prior to her operation. His first statement was "why do you think you are dying" followed by "I've seen anorexics put on 2kg and be fine" He then proceeded to say he wanted to talk about her cannabis use. At this point she asked him to leave. Ruby again was left devasted by someone challenging her. Not an once of compassion or awareness.
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The above person also liaised with Hospice and as you would see in Ruby's last media release..she never got hospice care despite it being organised by her specialist 5 months earlier.
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At the bequest of medical team Ruby agreed to see a private psychiarist. He had an hour with us both and a short visit with her in hospital. Professional bias again, collegue of pallative care person. Ruby had an anaphylactic reaction to her feed at a time he had an appointment. Rather than leave as requested by nurses and myself he observed her with the implication she was faking it. We requested no further engagement with him only to discover he had been sitting in on team meetings and had said she could fake her reactions to feeds.
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Ruby was dicharged home to die a week later.
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FAILURES IN CARE
DAILY CARE
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NURSING:
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NOT LISTENING TO THE PATIENT
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Rooming vomitting young woman in room with elderly men sharing a bathroom...imagine!
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Leaving without fluids required for dehydration...even when examples of what dehydration did, emotionally and physically voiced.
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Providing meals which could not be eaten, were known could not be eaten, but inisting they are.
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Insisting on their ability "to get a vein" when doing IV lines...despite being advised that they don't work anymore. Continuing with proceedure causing incredible pain and discomfort and damaging further line access.
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Having no knowledge of Eternal feeding proceedures but insisting (again) that do and refusing to listen to Ruby who had been trained in process. To the point of bullying and stropping out of the room at the point of discontecting lines and flushing. An absolute no no and potentially fatal mistake.
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Having junior nurses without experience responsible for complex iv line/pump.
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Setting up for infusions in public space 'whanau room' where not only uncomfortable but not aseptic.
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Not accepting Ruby's word on reacting to antiemedics, found trying to insert into line at 3am.
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MEDICAL CARE
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Succoming to professional bias by being influenced and not forming own opinion.
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Not having comprehensive handover between medical doctors. Rotation on wards often meant having to go over symptoms daily with a new team..starting again from the beginning each time. This would be a positive if it lead to them being inquistive enough to do some research but a nod and goodbye the norm.
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This fine drawing on the right was drawn for Ruby by a surgeon to show her what surgery he could consider. Turns out it was actually 5 proceedures.
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Bit of a story;
Ruby was visited by a medical doctor on a Friday, who she had not met before, insisting she have an operation on the Monday. She asked for more time before making a decision. He told her she needed to decide right then or would die.
At Ruby's request, he went off to get information on the procedure.
Came back with a gastric band for obesity. We did laugh...
After further bullying we asked to see the surgeon. At this point Ruby was digging deep for information. It required 5 proceedures and one month in hospital without moving. It also hadn't been done on a Gastroparesis patient..just diabetics.
But most telling - it couldn't be done on Ruby as she was below the weight threshold at 37kg, her potassium was 2.4 and extremely low blood pressure.
When Ruby's article regarding the no show of hospice the month before she passed came out, the DHB cited she had been offered an operation but had refused.
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Below is the intelligent list of questions Ruby had that clearly shows a flawed system.
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