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Interviews with survivors, victims' families, policy makers, and health care workers. What went wrong? How can we make health care safer? Host Scott Simpson, uses his counselling skills to evoke the secrets, stories and solutions. https://www.patreon.com/rss/MedicalErrorInterviews?auth=2eY8hVY9bd5o78a8cmpNSURYZ2VrqXrq
Episodes
Monday Feb 17, 2020
Monday Feb 17, 2020
Sandy and Anthony Perez kept telling doctors their daughter Jordan was very sick. Their concerns were dismissed and Jordan’s pain minimized. They were ping-ponged between specialists, dealing with ongoing misdiagnosis, and doctors who refused to listen to Jordan and her parents and threatened to remove medical care.
When Jordan died in the hospital, Sandy and Anthony thought it was due to a yet to be diagnosed illness. Only later would they find out Jordan had been poisoned to death by the hospital and they were covering it up.
Wanting justice for Jordan, Sandy and Anthony sought legal support - over 100 lawyers told them the same thing: California has a law that effectively makes hiring a lawyer for medical malpractice suits a non-starter: the law puts a cap on how much lawyers can be paid and how much victims can be awarded. Suing is a money losing proposition.
As Sandy and Anthony learned, the legal system is set up to deny justice to medical victims, and the medical system is set up to deny accountability of doctors. A de facto license to kill.
Jordan shouldn’t have died.
Sandy and Anthony shouldn’t have to fight to find out how the hospital killed their daughter.
Jordan's drawing, titled: Will you remember me?
SHOW NOTES:
Interviewing Sandy and Anthony Perez about their daughter Jordan | |
0:05:30 | Sandy was born outside of Chicago, but raised in California since she was 7 - had a normal childhood with 3 sisters - went to college - met Anthony in 1994 |
0:06:30 | Anthony was born and raised in California - good childhood with great mom and dad - their daughter Jordan was born April 5th, 2000 - she was a cranky baby, didn't want to sleep unless being held, always wanted to sleep with them |
0:07:30 | She was a one-off child, liked to do things her way - she liked to dress herself, there was no arguing with her - she played soft ball since age 4 and made the city's all-star team for 2 years - and her Dad (Anthony) coached her - when they moved to the high desert, they put Jordan in 'travel ball' - a more intense game softball league |
0:08:30 | The league had better quality coaches and was geared to show to colleges - it is called 'travel ball' because they traveled to and played in different cities - Jordan was the kid who would befriend others - at Jordan's memorial service, several of her friends spoke of how they were alone but Jordan invited them to play |
0:09:30 | It was very important to Jordan that others felt included and were not left out - in May 2014 Jordan started to complain of headaches - Jordan had allergies, including grass, but benadryul helped - then her neck started to hurt - in December 2014 she went to the doctor with neck and head pain |
0:10:30 | Jordan was suspected to have mastoiditis (infection in the masto bone behind the ear) and sent her to the ER - they didn't find anything, didn't run any blood tests, suggested it was migraines and sent Jordan home - a couple of weeks later Jordan had symptoms of the flu, couldn't keep fluid or food down, so they took her to the ER - they told the ER doc about the previous mastioditis diagnosis, so they ran more tests and found blood clots in Jordan's brain |
0:11:30 | They sent them to another trauma centre and that is where Jordan was treated for the next 3.5 years - they were frightened and wondering how it could've been missed - blood clots don't usually show up on CAT scans, but they did in Jordan |
0:12:30 | They were told the blood clots were a rare complication from the infection in the masto bones - Sandy and Anthony asked how Jordan could've gotten mastoiditis, and were told via infection of the sinus or ear - but Jordan didn't have those infections, so how could that be? But nobody could answer that - the hospital put Jordan on a hepadrin drip for a day and then changed to lovonox injections - both are blood thinners to more blood clots, but wouldn't treat Jordan's current blood clots |
0:13:30 | They also put Jordan on antibiotics for 6 weeks to fight the infection - Jordan started to perk up a bit, her headaches would coma and go, and she was treated with Toradol, which Sandy understands is a super Motrin, and that seemed to be Jordan's 'wonder drug' - she would be much better for 24 - 36 hours on one dose - it appeared Jordan was getting better - what they didn't know was that Jordan wasn't getting better |
0:14:30 | During Dec 2014 while getting treatment at the hospital, Jordan appeared to have a stroke and they sent her to ICU - ultimately they sent Jordan home saying she was improving and to continue the antibiotics - Sandy and Anthony were told Jordan had a stroke, and told she did not have a stroke - Jordan was sent home early January 2015 but Jordan was in the local ER a few days later with uncontrolled chest pain - the local hospital called Jordan's trauma hospital to transfer her, but they refused |
0:15:30 | The local hospital treated her and sent her home - the very next day they ended up at the trauma hospital with chest pain, increased headache, blurry vision, and a reaction to the antibiotic medication - they admitted Jordan for a couple of days, adjusted her antibiotic and sent her home again - about a week later, the eye doctor suggested a lumbar puncture because of Jordan's blurry vision and swelling of the optic nerve - this showed Jordan's cerebral pressure was severely elevated |
0:16:30 | A lumbar puncture extracts spinal fluid, during the process they monitor the pressure level and check spinal fluid for infections - Jordan's pressure was elevated, nearly twice normal - and it can affect vision |
0:17:30 | The following year they did another lumbar puncture, but the day after Jordan would vomit just from being touched - they put in a lumbar drain, to drain cerebral spinal fluid and monitored her for 5 weeks and make a decision how to proceed - in Feb 2015 they made a decision to internalize the drain, making it a lumbar shunt, and sent Jordan home - her headaches seemed to be improving, but she was taking Motrin daily |
0:18:30 | Jordan started developing a lump where she had shunt surgery, the doctors said it was filling with cerebral fluid, so they had to do a revision surgery - Jordan had to lay flat after the surgeries, she couldn't get up to go to the bathroom, so was very uncomfortable - she had a surgical scar on her abdomen as well as her back, and she was in pain - March 2015 was the revision surgery |
0:19:30 | Jordan needed another revision surgery in May because cerebral spinal fluid kept leaking of her back surgical scar - in June 2015 they went to Jordan's softball team's banquet because they recognized that Jordan had been on the team, but too sick to play - they had to leave the banquet early because Jordan started leaking spinal fluid, and they went to the hospital - they took the shunt out, and reverted back to the lumbar drain - a few days later they implanted a VP shunt, going from Jordan's head to her abdomen |
0:20:30 | The tubing was in the ventricles of her right side, and drainig the cerebral fluid into her abdomen - they put a hole in her skull, and the shunt ran down her head, behind her ear, and over her shoulder and down her back - and that was very uncomfortable for Jordan - Jordan's diagnosis never changed: infection causing mastoiditis, with rare complication of blood clots, causing increased intracranial hypertension |
0:21:30 | In January 2015 they learned from an infectious disease specialist suggested cancer could be a cause a differential diagnosis - oncology did ask about cancer in the family, and Sandy and Anthony said there was cancer on both sides, but the doctors never followed up for the entire 3.5 years |
0:22:30 | But June 2015 Jordan had daily headaches, impaired memory and vision, and still too sick for school - she was on the hospital home bound program to do some school work - Sandy had to write down Jordan's words because Jordan had IVs in her hand - she finished her freshman year about a week before her sophomore year started - the family went on vacation in August 2015, but Jordan stayed in the condo rental, she wasn't well enough to leave |
0:23:30 | So Jordan was still exhibiting the same symptoms from the start, in spite of the treatments, in spite of the surgeries - Jordan was back in the hospital a few times for head and chest pain, but the hospital couldn't find anything wrong and would send her home - in Feb 2016, Jordan's eye doctor say that Jordan's optic nerve was swelling again and recommended opening up the drain further to reduce pressure and help her vision and so she wouldn't go blind, but it was not to help her headaches |
0:24:30 | Feb 2016 the neurosurgeon opend the shunt all the way, but Jordan still got sick and was in and out of the hosptial - in June 2016 she saw a new pedeatric neurologist at the same hospital, and he started suggesting it was migraines because of a family history - Sandy told him it wasn't migraines because Motrin doesn't work on migraines, and Motrin worked for Jordan, she didn't need anything stronger - he then suggested Jordan was abusing Motrin - they pointed out she was only taking 400mg a day, and that is not excessive |
0:25:30 | The doctor also suggested they go back to hematology, and they took her off the blood thinning medication in June 2016 - but Jordan still battled with headaches, blurry vision, and kept getting sicker - Jordan's health would be up and down, so Sandy and Anthony tried to enjoy life with her |
0:26:30 | But Sandy was frustrated the hospital kept saying it was migraines and she knew it wasn't - when Jordan complained of jaw pain, they sent her to a dentist who couldn't find anything wrong - Jordan's joints would ache, but rheumatology would say there was nothing wrong with her - Sandy got more frustrated so took Jordan to another hospital for assessment, they too suggested migraines - Sandy was still working, when Jordan was in the hospital, Sandy would work from her bedside - do her job around doctors, testing, etc |
0:27:30 | Anthony says it was hard, they didn't know what they were dealing with - sometimes Jordan would grab her neck and Anthony thought it was maybe muscle spasms - when she'd come into the living room to get something to eat, she'd be doubled over, holding her stomach, saying how much pain she was in |
0:28:30 | To be experiencing that much pain without a proper diagnosis is ridiculous - Jordan missed her sophomore school year, and was on the home study program, but they had to fight to get her proper courses and support to keep Jordan in her honour classes |
0:29:30 | Jordan missed her friends, and it was hard on her - in July 2017 Jordan was getting increased headaches and had a new lumbar puncture |
0:30:30 | Sandy told the hematologist that Jordan seemed to be having blood clots in her toes, the doctor dismissed that and said Jordan must have dropped something on her toes to cause the trauma - Sandy explained that was not possible because Jordan was mostly bed ridden - the hospital said that Jordan needed to be taken off Motrin, she was using and abusing it - that night Jordan was vomiting because of the pain |
0:31:30 | She was admitted to the hospital that same doctor said that Jordan had migraines and needed to be detoxed from Motrin - he told Sandy and Anthony that if they didn't accept his diagnosis of migraines, he would refuse to treat Jordan - meanwhile Jordan is very sick with a forced diagnosis that didn't fit - Sandy told the head nurse that if they are saying it is migraines, then they might as well discharge Jordan - then a neurosurgeon came in and said he reviewed all Jordan's MRIs of the past year and a half and saw that she had enlarged veins since spring 2016 |
0:32:30 | He wanted to angiograms to see if that was causing issues in her brain - an angiogram is a catheter like needle into the body to see what is going on in the venous structure using contrast to show up on images |
0:33:30 | The neurologist who pushed a migraine diagnosis came in and wanted Jordan's complete history, so they told him about everything from 2014 up to that point - he said he would get a 2nd opinion hematology consult - but he never recorded it in her records and never requested it - he said he would give her a lumbar puncture but if it was a certain number they would have to concede he was right with the migraine diagnosis - Sandy told him what he wanted to hear to get testing and treatment for Jordan |
0:34:30 | When the numbers came back, Sandy maintained that it was not migraines, something else was making her sick - they discharged Jordan and gave her Motrin - they had one follow up appointment with the neurologist and he suggested it was psychiatric - he referred them to another neurologist and refused to treat Jordan - he followed through on his threat and refused to treat Jordan - they saw the new neurologist in September 2017, at first he mentioned psuedo tumor cerebri, this is alos intracranial hypertension when the brain thinks it has a tumor but it doesn't - he said he'd do some research and talk to them at Jordan's next appointment |
0:35:30 | Jordan was sicker and ended up back in the ER - they said it was migraines and copy and pasted previous notes that said Jordan was abusing Motrin - they put her on a detox protocol called DHE, a medication to help people withdraw from medications that are harming them - Jordan got sicker, not from the DHE, but from the pain - they also gave her Toradol (like super Motrin), so while they are detoxing her from Motrin, they give her high dose Motrin |
0:36:30 | The attending doctor said 'it looks like the DHE protocol is working' - Sandy said 'no, you approved Toradol, that's what's helping her, not the DHE protocol' - that doctor said they'll send Toradol home with Jordan - Jordan would be less sick with the Toradol, but after it wore off after 24 hours, she'd get sicker - Jordan had been taking the Motrin as directed |
0:37:30 | They went back to the neurologist who diagnosed intracranial hypertension, but he changed his diagnosis to migraines and attempted to treat her with migraine meds - they told him that Jordan did not have migraines - he suggested treatment with Botox - Jordan got sick during the appointment and they went across the street to the ER - again they said migraines, again Sandy and Anthony said it wasn't migraines, they gave her Toradol |
0:38:30 | The attending physician didn't examine Jordan, but asked if anybody had told them that Jordan had an enlarged spleen - Sandy said it had never been mentioned, what does it mean, what's the impact on Jordan - the doctor said 'its probably nothing' and they discharge Jordan with migraines - they went to Jordan's primary care doctor and said the hospital must be missing something - he order more testing, but it was to be done at the hospital, that's where all of Jordan's records were |
0:39:30 | On February 14, 2018 Jordan had abdominal imaging, ultrasound done - they wouldn't let Jordan leave at first - they asked about Jordan's history of blood clots and the shunts - they said Jordan had to follow up with her primary care right away - Sandy asked if they had to go to the ER, and they said 'no' - on the way home, Sandy called primary to make an appointment - Jordan was to come to primary care in the morning of Feb 16th - at the appointment they told the family that Jordan had 'portal vein thrombosis' which is blood clots leading into the liver |
0:40:30 | He sent them back to the hospital, they ended up in the ER - at the time they did not know that the person who introduced themselves as a doctor, was actually an unlicensed medical student, with no authority to examine, treat or discharge Jordan - his attending physician supervisor did signed saying she examined Jordan but never did - the 'doctor' said he didn't accept testing not from the hospital, and ordered all the same tests - they confirmed portal vein thrombosis - the 'doctor' said it was a GI issue and referred them to a GI department - Sandy called the GI department, but they refused to do anything while Jordan was in the ER |
0:41:30 | The GI department said Jordan needed to book a consult - Sandy told them they had previously requested a consult - regardless, they refused to set an appointment - Sandy asked the ER 'doctor' to bring in a GI doc to the ER for Jordan, but he said it wasn't necessary - they also asked that hematology be notified because this was the 3rd appearance of blood clots - again the ER 'doctor' said it was a GI issue and Jordan needed to be seen only as an outpatient - they discharged Jordan and told her parents it was not a life threatening condition |
0:42:30 | The following Tuesday Sandy called the GI department to make an appointment - they said they would review Jordan's file and call back in 24 - 48 hours with an appointment - but they didn't call until March 2nd - Sandy also called hematology to make sure they been told Jordan had more blood clots - they called back and said they were not told, and to take Jordan to the ER and they would admit her - Jordan was admitted on Feb 20, 2018 to Feb 23 -- on the 21st they wanted to send her home to be an outpatient, but Sandy demanded the GI come see Jordan will she was inpatient |
0:43:30 | The GI said that wanted to do an endoscopy to see inside her abdomen - they said the results were mild reflux, but nobody could explain the blood clots - Sandy asked 3 different hematologists about cancer testing - one said they could do that test, another indicated he would order them, but never did - the 3rd said cancer testing was unnecessary because her blood tests were normal |
0:44:30 | This 3rd hematologist is the same one who in 2015 was told to do a cancer differential diagnosis, which he never did - but Jordan's blood work was not normal - they sent Jordan home - on Feb 26th they were back in the ER, Jordan was doubled over in pain - she was seen by a resident doctor who insisted Jordan was constipated and gave Jordan an enema - Jordan felt completely humiliated - and still in pain |
0:45:30 | The attending physician signed off said she had examined Jordan, but she never came in, they never saw her - she was sent home with constipation medication - on the Feb 27th they called oncology, they advised managing Jordan's pain at home because they had an appointment on the 28th with hematologist and he would admit her to the hospital - on Feb 28th they had their appointment with the hematologist - Sandy begged him to help her - he said it was a GI issue, he could refer her to pain management, and sent her home |
0:46:30 | He never put that in Jordan's medical notes - that night they called oncology to let them know they were bringing Jordan to the ER and listed her symptoms - when they got to the ER just before midnight - they made Jordan wait for 4 - 5 hours -- Sandy kept letting them know Jordan's pain was very high, but other patients were prioritized, including somebody walking out on crutches from a sprained ankle |
0:47:30 | Jordan was admitted to the hospital on March 1st - the hospital staff said Jordan was quite sick - Sandy said 'yes, we've been trying to tell you that for 3 years' - on March 4th a new hematologist asked about the cancer testing - she suggested Jordan may have lymphoma and they needed to do further testing - Jordan was being monitored in the ICU |
0:48:30 | On March 5th Jordan was moved back to onclology and they did a bone marrow biopsy for cancer - on March 6th they were waiting for test results - Jordan was heavily agitated, kept trying to get out of bed - the last words she said to Sandy were "Mom, I just want to go home" - Jordan layed back down and fell asleep - later that night Sandy went to Ronald McDonald house to get some rest |
0:49:30 | About 30 minutes later the hospital called Sandy to say Jordan was non-responsive and they had administered Narcan - Sandy got back to the hospital and over heard the doctor arguing for the last bed in the ICU - they told Sandy again they had given Jordan Narcan, it is given to someone to reverse an overdose - On March 6th they moved Jordan back to the ICU and said they needed to put Jordan into a medically induced coma to allow time for her to heal |
0:50:30 | The resident doctor told them that Jordan's ammonia levels were very elevated - Sandy asked how they missed that? - his answer was 'not to focus on placing blame, but to focus on Jordan getting better' - early March 7th they placed a drain in Jordan's abdomen - Instead of draining normally, it was draining into Jordan's abdomen - a couple of hours later the same doctor that was arguing for an ICU bed, told Sandy and Anthony that they were life-lining Jordan to another facility because she needed a liver transplant |
0:51:30 | So they started to prepare for that - Anthony went home to grab some sleep and Sandy stayed at the hospital with Jordan - at about 8am the ER attending doctor said Jordan was very sick, Sandy said we've been trying to tell you that - during morning rounds, the GI doctor who saw Jordan in Feb, came running in and told the attending hematologist she failed to read Jordan's lab work from weeks prior when Jordan was in the hospital and had alpha one anti trypsin deficiency disorder, and it affects the liver and lungs |
0:52:30 | The doctor than told Sandy she'd provide more info once Jordan was stable and transferred to another facility - Sandy and Anthony thought the worse was probably over, and the staff never said Jordan was dying - around 8:30 neurosurgery came in and said they needed to remove the shunt tubing from her abdomen because she had an infection and they didn't want it to spread to her brain - so Sandy and Anthony permitted that surgical procedure |
0:53:30 | Sandy was waiting in the family room right outside the ICU while they performed the procedure - at about 10:40 am while Jordan was still in surgery, a social worker came into the family room and told Sandy that Jordan had 'coded' during the procedure - Sandy remembers running to Jordan and yelling 'you killed my daughter, you killed her' - the social worker asked Sandy what she meant - she said that they'd been bringing Jordan for help and they kept saying migraines |
0:54:30 | They did CPR for about an hour until Anthony could get to the hospital - they gave Jordan blood products - but they stopped at about 11:40 am - that day they asked Sandy and Anthony if there was anything they needed - Sandy and Anthony asked for the lab reports and testing as they had other children and wanted to know if there was anything they needed to worry about - the hospital said they would get those results to Sandy / Anthony, but they never did - about 2 weeks later, they went to the hospital's patient relations and requested the information again - and filed a complaint |
0:55:30 | State law says they have to turn over medical records within 15 days, but they didn't hand them over until about 40 days later - when Sandy was going through the records over the next few months, in July 2018 she realized the records were missing a huge chunk of data - so they requested again, and it took another 45 days to get more records - to this day, Sandy and Anthony still don't have all Jordan's medical records - that info was either withheld, or never recorded |
0:56:30 | In Feb 2019, Sandy and Anthony went to Washington DC for rare disease week - they went because of the rare blood disease Jordan was diagnosed with 6 weeks after her death, called 'primary myelofibrosis', an extremely rare form of leukemia, less then 50 children in the US diagnosed with it - less then 20,000 nationally - someone at rare disease week said something sounded fishy - they were advised to ask if Jordan's death had been reported to any agency |
0:57:30 | Sandy contacted the California Department of Public Health to see if Jordan's death had been reported - they told Sandy they had no record of Jordan's death - Sandy asked if the hospital was required to report Jordan's death - Sandy was put on hold - she was then recommended to file a complaint - so she did file a complaint - even though Sandy and Anthony have had several conversations with the investigator, they still don't have any info and its been 10 months |
0:58:30 | It is a state investigation, so red tape, bureaucracy, limited personnel - those things have caused delay - they hope to get more records soon |
0:59:30 | They had Jordan's GP look at the records, and paid a professional to review and confirm Jordan's eventual diagnsosis of 'primary myelofibrosis' - the hematologist who had suggested lymphoma called Sandy and Anthony on April 23, 2019 and asked if any one had spoken to them about what was going on? - Sandy asked if Jordan's diagnosis had of been caught earlier if Jordan would still be alive, and the hematologist said 'yes' - but never heard from the hematologist again, but knows she left the hospital in April 2019 |
1:00:30 | Sandy researched 'primary myelofibrosis' and life expectancy is up to 10 years after diagnosis - but she could have been cured with stem cell transplants or been in remission and lived a full life - in April the hematologist said she'd written a report and what happened to Jordan - in Sept 2019, Sandy and Anthony found out that the hospital had overdosed Jordan causing her death - and they were not monitoring her as they should have been |
1:01:30 | Sandy and Anthony think the hematologist report covers an adverse event, and by state law that must be reported, but the hospital chose to cover it up instead of reporting it - in California they have laws that put a low cap on medical malpractice settlements making getting a lawyer impossible because they won't earn any money |
1:02:30 | So the system is set up so patients can't get justice, and doctors are not held accountable either by the justice system or the state medical board - Sandy and Anthony have not heard from the medical board since they filed their 9 complaints against the providers |
1:03:30 | Sandy and Anthony asked, in January 2019, the investigator to include another 257 providers associated with hospital or Jordan's care, but they have not heard any thing - Sandy and Anthony have been advocating for reform of the MICRA Act (medical injury compensation reform act of 1975) |
1:04:30 | MICRA limits compensation to $250,000 due to medical injury or death by medical injury - it also limits how much an attorney can be paid to about $75,000 - but in Jordan's case it would cost about $200,000 to litigate, making it economically infeasible, and that patients can't get justice - there is a current ballot proposal called the Fairness for Injured Patients Act (FIPA) that they want on the November election ballot to overturn MICRA |
1:05:30 | Sandy and Anthony filed a medical malpractice case in May 2019, naming 22 defendants - they are expecting the defense counsel to do a 'demure', and that is saying the case is unwarranted and why - then Sandy and Anthony will have an opportunity to respond to the 'demure' |
1:06:30 | Then the case will be heard by a judge who will decide if the case has merit or not - Sandy and Anthony don't have a lawyer, but have consulted with attorneys, but Sandy and Anthony are writing the legal briefs |
1:07:30 | There are thousands of Californians who've been medically injured who have no recourse - that what the FIPA will remedy - and that is why families are speaking publicly - under the current law, children and the elderly are most vulnerable - Sandy has cashed in all her savings to help pay for things |
1:08:30 | They have started a GoFundMe page to help with legal bills they will occur |
1:09:30 | Sandy is up and down emotionally - she has a lot of work today in addition to her day time job - reviewing files, preparing legal documents, being a wife and mother - but Sandy doesn't feel like she's had a chance to grieve the loss of her daughter - Sandy and Athony are making meaning through advocacy in Jordan's name - they want to make sure the hospital doesn't kill more people -- they use #JordansStory on twitter and Facebook |
1:10:30 | Sandy says if you're sick, or a caregiver, and you don't believe the doctors, push back, seek 2nd, 3rd or 10th opinions if you have to -- the doctors told Sandy and Anthony that there is so much info about diseases, they don't even know 1/ 10th of it - so don't let them discourage you, and ask them to have conversations about your own research - don't let them disparage you, don't let them chide you, don't let them discourage you from doing your own research and asking your own questions |
CONNECT WITH SANDY AND ANTHONY ABOUT JORDAN'S STORY | |
Twitter @alpslp98 GoFundMe - Justice for Jordan |
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Scott Simpson:
Counsellor + Patient Advocate + (former) Triathlete
I am a counsellor, patient advocate, and - before I became sick and disabled - a passionate triathlete. Work hard. Train hard. Rest hard.
I have been living with HIV since 1998. I was the first person living with HIV to compete at the triathlon world championships.
Thanks to research and access to medications, HIV is not a problem in my life.
I have been living with ME (myalgic encephalomyelitis) since 2012, and thanks in part to medical error, it is a big problem in my life.
Counseling / Research
I first became aware of the ubiquitousness of medical error during a decade of community based research working with the HIV Prevention Lab at Ryerson University, where I co-authored two research papers on a counseling intervention for people living with HIV, here and here.
Patient participants would often report varying degrees of medical neglect, error and harms as part of their counseling sessions.
Patient Advocacy
I am co-founder of the ME patient advocacy non-profit Millions Missing Canada, and on the Executive Committee of the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis Research Network.
I am also a patient advisor for Health Quality Ontario’s Patient and Family Advisory Council, and member of Patients for Patient Safety Canada.
Medical Error Interviews podcast and vidcast emerged to give voice to victims, witnesses and participants in this hidden epidemic so we can create change toward a safer health care system.
My golden retriever Gladys is a constant source of love and joy. I hope to be well enough again one day to race triathlons again. Or even shovel the snow off the sidewalk.
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