Gregory Hartley Brewer, from Bath in the United Kingdom shares his long battle to get a diagnosis for his Lyme-like symptoms, and then trying to access proper treatment once diagnosed with Lyme many years later.
But he is now embroiled in a long battle with the health care system as they try to cover up their missed diagnosis mistake and protect the doctors that not only denied Gregory medical care, but may have behaved in a criminal manner in conspiring to cover up their medical error.
But he has not given up: hear how Gregory is taking on the Goliath that is the United Kingdom health care system and exposing their attempts to hide a medical error that has morphed into much more serious and potentially criminal behaviour.
SHOW NOTES - TIME STAMPED
Gregory, early 50s, born in Birmingham, UK - moved to States as a kid for a few years - back to London, then Bath - happy childhood, middle class upbringing - more sporty then academic - found drinking, girls and smoking so didn't go to university - bar, nightclub work - still looking for niche - loved helping people in community job
2005 Gregory get bitten by tic in backyard, but he's unaware of the existence of Lyme - rash and flu like aches - April 2005 collapsed with stabbing pain in chest chest, 'like being stabbed with a knife", thought he was dying - within a week went to the doctor and was diagnosed with hyperlipidemia, aka high cholesterol and triglycerides - couple of weeks later to another physician in same clinic and recounts rash and flu like symptoms - doctor says that sounds like Lyme, but it can't be Lyme because you're not seriously ill
A few weeks later he returns to doctor to say he thinks he has Lyme and she get angry and said he couldn't have Lyme because he's not seriously ill - Gregory believes her - in retrospect she was protecting her misdiagnosis that was only 4 weeks old - this is how uttterly their reputations come before patient treatment and safety - Gregory asks for Lyme testing, she refuses
Realizes some of his doctor appointment notes are missing out of his file, thought it was strange but had faith that the doctors knew what they were doing and there can't be a nefarious reason for that
He worsens with Lyme symptoms: Peripheral neuropathy, palpitations / pericarditis, chest pain, anxiety from encephalopathy, low grade meningitis, headaches, sore shoulders - by 2008 in bad shape, reticent to raise Lyme disease for fear of denigrating and angry reaction - symptoms cause big impact on his social life, went from very social to feeling too anxious and stopped going out, lost friends from isolation
Gregory feeling anxious but not depressed, but no external anxiety trigger - no rhyme or reason when anxiety came - now knows it was bacteria impacting his brain - describes peripheral neuropathy in his legs - pain, squeezing, crushed and wants to explode - due to nerves being attacked by bacteria - may last minutes or hours, no rhyme or reason, sometimes hurts to walk - puzzling as to what is happening in his body, vacillates seeing doctors because they looked at him like a bloody idiot - by 2008 the doctor must have known these were Lyme symptoms - only 3 GPs in this clinic
2009 bitten again by a tic in his field and sees rash on the inside of his arm - its a Sunday so Gregory went to health center, diagnosed Lyme immediately and given one week supply of doxycycline, but later finds out he should have been given 2 weeks according to the National Institute of Clincal Excellence (NICE) guidelines at the time - doctor sent note to his GP about Gregory's Lyme diagnosis - about 9 months later symptoms worsen again, returns to his GP and is again denigrated and dismissed
GP says just because you had Lyme disease and it wasn't properly treated, doesn't mean you have it now - Gregory asks why their multiple discussions about Lyme disease are not in his medical file and the GP says she decides what goes into his medical file - Gregory requests that she make a note about his Lyme diagnosis in his file, she threatens to fire him as a patient if he keeps saying he has Lyme - turns out there is no mention of Lyme in his medical file from 2005 to 2014
GP didn't want Lyme in his notes because it would come back and bite her - willful lack of insight about his symptoms - negligent since 2009 for failure to test and treat - switches to different doctor, and this doctor also says Gregory's symptoms are not Lyme - even though Bath high risk is endemic area there are no signs any where - Public Health England is responsible for responding to Lyme disease stopped Bath public heath from putting up signs after secret study found high concentration of tics in Bath area - without public signs Gregory wasn't aware Lyme in his area, mixed with phsycians who are Lyme illiterate - many, many patients sick but not diagnosed - a national scandal
Lots of known unknowns about Lyme - NICE just changed guidelines saying that Lyme relapse can happen, and can access 4 more weeks of treatment - but lots of patients misdiagnosed and not diagnosed - but found new GP in March 2016 who is treating him well - gets 2 or 3 courses of antibiotics a year to manage, but not cure, his Lyme
In 2018 Gregory gets Macular Erythema on his hand, a sign of systemic disease, but if not for that sign, he wouldn't be able to get a Lyme diagnosis - about 300 GPs in UK treating long term Lyme sufferers outside NICE guidelines - lots of Lyme patients don't get treatment
Lots of UK people get tested positive for Lyme in Europe labs but testing in UK finds Lyme negative - UK relies heavily on testing and not on clinical symptoms - Gregory contends that since Lyme testing is unreliable and inconsistent, that clinical symptoms should be used to diagnose - also because a person can test positive for Lyme and not have any symptoms because they've produced antibodies to the Lyme - can also have no antibodies and still have Lyme because the body did not produce antibodies - ELISA and Western Blot tests - a scandal in the UK as thousands have Lyme symptoms but no treatment - central Europe is better at treating :28:15
Gregory thinks when a doctor doesn't know what to do when a patient tells them one thing and testing the opposite, they fall back onto science (testing) - and it is very poor in Lyme disease - NICE guidelines basically say we have no confidence in what we're proposing, but we need to propose something - because doctors can't see symptoms they will attribute to another illness or give the patient a psychological diagnosis - Rob Hackett Australian medic on twitter wants aviation standards in medicine - Gregory re-tweeted Scott's tweet about a black box in the operating room
Hackett studies patient safety - bystander effect, ego, reputation - in Gregory's case it was ego that prevented the physicians from admitting they were wrong, thereby denying treatment to him - instead they conspired and were cruel and degrading to leave him ill deliberately - if not for diagnosis by another GP, Gregory would be still be suffering greatly with symptoms and still being told he has psych problems
December 2014 these GPs decided that they couldn't give Gregory a diagnosis of Lyme - goes to locum to see doctor about symptoms but he was misdiagnosed with prostatitis and given medication for that and Gregory had a bad reaction - says to locum doctor that he has Lyme, doctor believes him, but only gives 2 weeks of antibiotics - Gregory goes back to GPs who say he doesn't have Lyme because he has negative serology - he feels depressed and distressed
Gregory researches and finds that the Public Health England's Doctor Pathway says that antibiotic treatment may produce false-negative results - presents to GPs and this compels them to have a meeting with PHE but they send their newest and most junior GP to the meeting to withhold multiple information from PHE and to deny Gregory treatment in August 2015
Gregory finds Lyme Disease Action help people with Lyme get a diagnosis - they write to his GP, who informs the PHE, who realize right away that they were previously withheld information about Gregory - however PHE leaves it to GPs to decide treatment and they say there is no Lyme to treat in Gregory
LDA decides not to report these 3 GPs for criminal negligence, but Gregory is able to access treatment from them because if they refuse, the LDA can still report them - Gregory gets 4 weeks of treatment but did not yet know they were withholding clinical history from PHE so continues at the clinic - but if he had not got 2nd opinion, he'd still be suffering
Gregory emails PHE directly and gets almost immediate response apologizing for discrepancy in the reporting of his symptoms in all the discussion - Gregory finds out later the PHE forwards email to Gregory's GP with angry note, so GP now knows Gregory knows that PHE was not given full medical file - this leads to more forgery down the line
Gregory realizes the GPs are being willful, but he does not know why they wouldn't give full medical file to PHE - GP avoids talking to LDA because LDA has full medical file and will ask GP why she only sent partial file to PHE
Gregory files complaint with NHS - GPs are employed by NHS - and recieves their 1 page report in March 2016 and it is "so corrupt" - ignores early diagnosis - Gregory files another complaint and this time NHS realizes he knows something is wrong - they produce 10 page report and dismisses Gregory's symptoms and blames him for poor medical care - so they are protecting GPs and covering up their harm
July 27, 2012 - Eureka moment - if he is diagnosed with Lyme in 2015 from 2009 onset and denied medical care, then that is criminal negligence - now Gregory understands their motive and explains all their behaviour and actions: to cover their asses from criminal negligence which now not just a mistake, but a conspiracy to deny a patient treatment - they must have sat down at some point to decide to deny he had Lyme
NHS notorious for covering up mistakes and attacking whistleblowers, be they patients or medical staff - there is a culture of defend, deny, delay - Gregory investigates himself by getting access to emails and puts more pieces of the hidden puzzle together - more denial, lying, created fraudulent email but never sent, blaming PHE, to protect their position and prevent exposure of their crime
Gregory continues to research and submit evidence to Palriamentary and Service Ombudsman (PSO) and General Medical Council (GMC) in December 2016 - LDA says can't support Gregory, with subtext they will be punished as whistleblowers and closed down by National Health Services (NHS) - more coverup happens by GMC and dismiss his evidence - PSO even slower - Gregory appeals GMC decision, they admit Gregory's case meets their high threshold for investigation, but claim they see no evidence of doctor misconduct and dismiss the case - PSO also dismiss and ignore evidence
Gregory takes the GMC to court in September 2017 but loses - appeals again to be heard - PSO closes investigation because "you will be disappointed with the outcome" - PSO well known as dust bin for complaints - September 2018 launches Judicial Review against PSO and gets oral hearing - Judge agrees PSO behaved badly but says PSO can act at own discretion - PSO fails to tell Gregory they must agree on scope of investigation, this gives him leverage to appeal - can't get legal support because nobody wants to believe 3 GPs intentionally denied a patient treatment for years
Gregory has found case law that doctors must treat, otherwise a criminal act - PSO has broad powers, but refuse to interview 2 witnesses, who's careers would be in jeopardy for not reporting the GPs for non-treatment - this is all a lot of stress, not a normal life, wish for happy days - GPs just 500 yards away and other patients at risk - willfull lack of insight into patients Lyme symptoms - knows a woman who was dismissed by GPs, turns out she had cancer for 2 years, and died soon after proper diagnosis, and refused to apologize - they are a danger and Gregory will do everything in his power to expose them
Others who are whistleblowers suffer greatly from blowback from goverment institutions - at end of the day, CEO of NHS Trust do not want their dirty laundry aired in public and will crush any thing that threatens that, no matter how obvious - recent case Dr Day in England where they tried to exclude junior doctors from whistleblower protection - statutory duty to protect patients - misconduct in public office - UK police rarely charge people in power
End of day, patients and medics suffer - if try to stand up, you are beaten down - most patients just want recognition and apology - but instead wilfull denial of their mistake - yet so wilfully doing harm by denying treatment - Gregory will have to report to police - conspiracy because junior doctor had no reason to lie, except to protect her senior doctors
Gregory sent email to junior doctor asking her to testify and the police show up on his doorstep with a 'community protection warning' to protect community from harassment - senior partner made sure junior doctor not available to be interviewed by police - 2 senior partners are professional liars - police refuse to acknowledge crime against Gregory, but feels he has to compel them to investigate
Started twitter April 2018 to put his experience out there - realize many others with similar experiences - solace and support finding others - next thing is to form groups and attack these organizations that are covering up all these cases - produce blog, keep campaigning - show its all a scam saying to public we've got orgs to support you, but its all a lie - they are in own silos and don't want to kick up a fuss and lose their job, pay cheque - huge scandal in UK and other countries
Last few months have been very difficult - started smoking again, stopped exercising, depression, self doubt, anxiety - some days better if get a bit of good news, but most of time it is a crushing weight - drinking to get to sleep - irritable, angry
Can't remember feeling happy, part due to Lyme symptoms, but mostly due to the situation - affects all parts of life - bloody nightmare - constant worry - affecting relationships, compounds Lyme - borderline sociopaths in high positions shown by their actions
GPs don't want to discuss trauma he's experienced by health care system, so can't get help for trauma - don't give up, just keep going
1:13:45 - end
Follow Gregory on twitter.
About the podcast
I’m Scott Simpson, a personal counsellor by day, a podcast host by night, and a sick and disabled patient advocate surviving medical error.
My hope is that by sharing stories of medical error, we can bring awareness to this 3rd leading cause of death, and implement solutions for patient safety.
Host Scott Simpson
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Turns out that a lot of people working on patient safety, have personal experiences with medical error.
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