Ruby's Story
Ruby's Story has already affected change for a small number of sufferers, after it had been presented in an overseas symposiums as well as media articles. We want to reach more . Ruby's story is not hers alone, sadly there are many others. . As the saying goes...
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One day, sharing your story of what you went through will be someone elses survival guide.
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This​ is ​for you Rubz...as you wished it to be x.
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Ruby was passionate about advocating for an understanding of Gastroparesis, the right to be heard as a patient, and the use of medicinal cannabis to treat her symptoms.
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There were many occasions when Ruby wasn’t heard and this impacted on the care she was given. Professional bias, unprofessional care, personal attitudes and ignorance combined to cause great stress and harm and ulimately the devastating outcome.
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Ruby was very much maligned at times and treated as if she was difficult and her health issues psychological. Where as, the reality was she was wasn’t being listened to, not being afforded respect, compassion nor empathy. Through most of her illness she was malnourished and dehydrated. She was incredibly knowledgeable about her condition and her intuition and knowing of what was happening within her body was mature. She was also often more informed on treatment protocols than many of the health professionals administering them. This frequently incurred the "we know best" stance which was proven over and over not to be the case.
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There were some fabulous members of Ruby’s team, and they will know who they are, as she never failed to acknowledge and thank them.
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It will be confronting for some who were involved in Ruby's care. It will assuredly raise the nah sayers call of not possible, didn't happen, couldn't happen and as the writers of her story, we are aware of this. But it is exactly the reason we are telling her story, as it happened to Ruby, and those who say differently are exactly those who we would like to have raise their awareness.
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It is not a crusade or a witch hunt. Its an opportunity for learning. For changes to be made to a broken health model.
This is Ruby's story but it is also a similar to what many others suffering from Gastroparesis experience.
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Ruby was a healthy and dynamic 19 year old living her dream, an independant fun loving soul. She was just hours off obtaining her private pilots licence and was training for her commercial licence when she had symptoms of appendicitis. Only 3 months prior she had passed her rigorous Civil Aviation Medical. While in class she had sudden onset pain. The next five days were spent in hospital, nil by mouth, on morphine waiting for a surgery slot.
Her appendix was eventually removed and from that point Ruby’s life was immeasurably changed. From the moment she was discharged she was so unwell she kept returning to doctors and hospital looking for answers.
Ruby spent eight months seeking diagnosis for her symptoms of constant nausea, vomiting and intense pain.
“Gastroparesis.” (Literally a paralysed stomach) was the eventual diagnosis, followed by the words ' no cure'. Devastating news.
Ruby wasn't provided information on Gastroparesis and set about learning all she could to help herself.
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Even when Ruby finally had tests which provided a proven diagnosis, health professionals constantly disbelieved Ruby, and medical misadventure was followed by medical incompetence. The “all in your head” and “anorexic” labels were liberally attached. These labels prevented Ruby from been afforded appropriate treatment. Ruby battled this ignorance on a daily basis whilst declining physically to a critical condition. She researched Gastroparesis and had a wealth of knowledge, but very few would listen. In Ruby’s last week we learnt if she had been listened to, it could have been a very different outcome.
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We hope having a voice and sharing Ruby’s Story will alter belief systems.
Her story is incredibly sad and she suffered immeasurably from incompetence, arrogance and prejudice….but RUBY WASN’T SAD!!
Ruby lived each day with such passion and vitality. She achieved some incredible feats... a supernatural energy that left us in awe of her strength and courage.. and mostly her love.
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Every day we are seeing stories, in main stream media, about patients suffering and mostly due to not being listened to. We are getting a barrage of ill-informed reports on the Cannabis reform. Ruby used CBD and THC products with incredible benefit. The barriers she had to fight through and the stigma attached are mind blowing, even when her prescription for CBD was through the hospital. This will form another aspect of Ruby’s Voice.
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Through Ruby’s Voice we hope to engage with health professionals by sharing Ruby’s story directly. A real story with devastating consequences but hopefully a story that will bring enlightenment and change for so many people in similar situations.
A story with many personal successes and a life lived well.
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Failures in Care
Systematic failures in the care of Ruby.
We are sharing the following examples of failures during the care of Ruby, in the hope that it will give context to what occurs time and again with Chronically ill patients .
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We fully comprehend that at times diagnosing a chronic illness has complexities and as time goes by multiple co-morbidities can be added to the already challenging symptoms.
BUT.... and its a big but....we do not understand how health professionals can be so dismissive of what patients are experiencing, both physically and emotionally.
That terminology of "all in your head " label does not then lead to any appropriate, supportive health care. In fact its often the opposite.
So many chronically ill people find that most, if not all, care options are stopped in their tracks once this label has been attached...wilfully denying the patient a chance of living a good life, at times causing death.
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In our engagement with other suffers of Gastroparesis, we have heard many such horror stories. Yet these sufferers are strong and resilent and battle on.
Message from Ruby's mum
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To quote David Attenborough "THIS IS MY WITNESS STATEMENT ."
I have chosen this forum to share Ruby’s story, as she wished, with the desire to effect change within the current health model.
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I was beside Ruby throughout her illness . I rarely missed an appointment nor was far away from her beside.
What I witnessed at times ,of the treatment and management by some of the healthcare professionals “caring” for Ruby, there was nothing short of a bullying toxic belief system. She was often belittled , maligned and dismissed. The effects of malnutrition and dehydration were not even considered, as she was often left for hours and even days without intervention, and any requests for urgent help met with distain.
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There was absolutely no need for it. It was an ingrained personal belief system that they were unloading onto Ruby, and I.
They could not even step back and see this was a young girl terrified of the trajectory her health was heading. And a mother trying everything in her power to alter the destination.
If Ruby had been listened to, it would not have been this outcome. FACT.
Polar opposite to this treatment, were some absolute angels. Their compassion and empathy flowed so naturally and they were respected and loved by us. Their ability to remain professional, deliver care and treat the patient as a person will always be remembered with gratitude.
It doesn’t need to be this way. The current health care model is broken and we can no longer ignore the consequences if it continues. We have been through it, spat out and are returning to offer solutions. They are simple. They can be implemented. Its all about belief."
I am grieving and at times aggrieved. There are moments when I want to rage at some of the people who treated Ruby with such disregard. But that is futile. The path chosen has so much more to offer.
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Jo Hill