Scott Simpson - Counselor for people living w Long COVID, MEcfs, vax injury, Lyme+...
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0:05:00
Steve grew up in Stafford, England - a happy childhood, with one brother - moved to Rugby when he was 17 and he had been doing poorly at school but then started to think about his future - Steve did not know what he wanted to do, but because his friend's father was a psychiatrist, and Steve grandfather had mental health issues, he was drawn to that field - but worked in a restaurant in Coventry and met some Australians working there
0:07:00
Steve then moved to Shepparton, Australia on a work holiday - Steve had a wonderful experience, working in bars, fruit picking and other casual labour - Australia was booming while the UK experienced 'the winter of discontent' - that 10 years traveling and working in Australia provided more experience to draw on than any training course - have to rely on your wits, meet a variety of people - when he later became a mental health nurse, he'd already come across mental health issues from his experiences
0:09:00
Steve always thought he wanted to do nursing, had realized he couldn't be a casual, traveling worker forever - he was accepted by St Georges in London, UK - Steve did general nursing followed by specialty in mental health nursing - drawn to it in part because his grandfather spent his life in a mental hospital and died there
0:11:00
Steve was attracted to the physical and mental health of a person, to look after the whole person - when Steve first started, he worked in a large acute ward with 40 beds - it wasn't a kind environment, but the people he worked with were good - Steve was interested in community mental health, and there were a few teams at that time - when Steve returned to nursing in 2002, he recognized how much things had changed
0:13:00
After nursing for a few years, Steve started to work for US company SMS in the UK - they provided IT services to health care and Steve thought he'd work for them for 6 months but stayed to 10 years working on clinical systems and became a senior consultant - working on 'clinical systems' meant he spent a lot of time on wards and with doctors - Steve also specialized in clinical governance showing the clinical credibility of the system
0:14:45
Steve tweets and talks about medical errors a lot - the 1980s things were different, a lot of shocking things - Steve worked on a ward where one doctor would not tell cancer patients they had cancer, something that wouldn't happen now - Steve has seen medical errors happen and 1 doctor say another is responsible, but nothing came of it - there was no structure to deal with it - doctors and nurses were a law unto themselves
0:15:30
A recent case in the UK where a doctor didn't tell a patient a cancer diagnosis and that has hit the headlines - Steve thinks it is arrogance - but often patients would ask nurses for the truth and would be told - the kindest way to describe doctors holding back a diagnosis is paternalism, "I'm the doctor, your the patient, I know what's best for you' - still common unfortunately
0:17:00
After 10 years in IT, Steve returned to nursing in 2002 - worked for local 'assertive outreach team' to work with people who have been labeled 'hard to engage' but Steve said its the services that are hard to engage - working with people that are marginalized, they had more freedom to try different approaches and had a lighter case load
0:18:30
Steve worked with people who took street drugs - his approach was to include their drug use in their recovery plan - they would try to find what worked with each person - Steve had seen a lot of meds given to people to sedate them - sometimes meds just made people look like they were better to the clinicians, but they actually felt terrible
0:20:00
Steve would ask his clients 'what would help?' - Steve had to build trusting relationships - he spent 3 months talking through a door crack before one client let him in - one client told Steve he appreciated being treated like an ordinary person, this was the best compliment Steve received
0:21:45
Sedating patients and giving information are both medical error, and can lead to harm - there's a lot of research showing antipsychotics and how they make patients look like they're better, but they're not - arrogance is a medical error - for mental health, health care workers can persuade people to do things that are wrong for them
0:23:00
In the UK, the mental health act, to lock someone away, a mental health assessment is undertaken and different people do the assessment and recommendation - there is a big legal process, it doesn't always work well and some people have been 'sectioned' (locked away against their will) when they shouldn't be - Steve has seen people sectioned inappropriately
0:24:00
Steve thinks one person was sectioned because he was Spanish - this person had an English accent but was raised in Spain and had Spanish expressiveness, and that is why he was sectioned - on the other hand, Steve has seen some really ill people who initiated a mental health assessment, and he was very worried they would not be sectioned because they were such a risk to themselves
0:26:00
Steve is starting to learn more about the shocking situations where the parent, usually mother, is accused of 'fabricating or inducing illness' on their ill child - also called 'Munchausen by Proxy' - in children with ME (myalgic encephalomyelitis) / chronic fatigue syndrome, the blame shifts to the parents and that happens a lot - Steve has worked in situations where the mother is ignored and labeled as 'difficult'
0:27:15
The case of Oliver McGowan, he had mild autism and a learning disability - the state thinking it knows better than the parents is a huge issue in the UK - Oliver was 18 years old and died 2 years ago in hospital - he occasionally had seizures, and would be a bit agitated as he came out of it - they were investigating his seizures - he had been mistakenly sectioned
0:28:30
2 years ago he had a seizure and was admitted to hospital and was ventilated so they could do a brain scan - in the past, Oliver had been given antipsychotic meds and he always had an adverse reaction to them - at one point he had a dystonic reaction - an oculargyric crisis (reaction to certain drugs or medical conditions characterized by a prolonged involuntary upward deviation of the eyes) - extremely frightening as your eyes roll back and you can't move
0:29:00
Other antipsychotic meds made Oliver feel like there were flies buzzing around in his head - Oliver was never psychotic - Oliver had a care plan that said not to give him antipsychotics - in the ambulance on the way to hospital he said 'please don't give me antipsychotics' - Oliver told staff again at the hospital and it was written on his drug chart in red ink
0:30:00
But he was given antipsychotics and died from neuroleptic malignancy syndrome, a rare but fatal reaction to antipsychotics - his mother Paula has campaigned for training in hospitals for all staff on disabilities and autism - just started rolling out Oliver's Campaign is hashtag (#OliversCampaign)
0:31:30
Doctors are duty bound to take the patients best interest decision by taking everyone's views into consideration and document it, but that wasn't done
0:32:30
Steve had a whistleblower experience - it is not just a hospital problem, it is society wide - when Steve left the NHS in 2006 he had some recommendations - the team he worked for was being disbanded, yet produced good service - Steve wrote a letter using the formal grievance procedure - but Steve deliberately copied the letter to one of the general practitioners the team worked with very closely
0:33:30
Steve was suspended - Steve thought, 'if you try to change things with a reasonable letter, and then you get suspended for 6 weeks' - he didn't want to work for that kind of organization - Steve became an independent consultant and got hired back by the same people for another 5 years - but in the NHS, people who speak out are ostracized
0:34:30
Eventually Steve lost all his work when he made a Protected Disclosure to the Quality Care Commission (QCC) about changing reports, bullying of staff - Steve had been hired to train nurses - he gave them an exam at the end because he knew they didn't know what they were training - suddenly they only wanted him to do the exam, not the training - Steve said these new graduates would fail his exam without training
0:35:30
There was an external review of Steve's complaints but he's never heard about it since - although they interviewed Steve, he's never seen the QCC report - he been blacklisted and that cost him some work - Steve had to reinvent his career - interestingly, other parts of the UK are inviting him to talk about this because they realize treating staff poorly is bad for patients and they can't recruit workers - Steve didn't want to be a whistleblower, he just wanted to do his job properly
0:37:00
The report was in 2014, but nothing has changed - Steve is involved with a group Whistleblowers UK - currently is a worker raises concerns about patient safety you'll probably lose your job - but the profile of whistleblowing has grown, and maybe at a tipping point - partially due to lack of staff and trouble recruiting
0:39:00
In part, due to Brexit, many foreign workers have gone back to their home country - reforms in 2012 was a disaster - Steve has looked at health care in other countries, and they have same problem
0:40:00
The problem recruiting is the culture of arrogance - Steve believes patients are their own best experts, and clinicians have got to change, there is no choice - must change some fundamental things - 'shared decision making' between clinician and patient is wrong, an arrogant way to look at it -
0:41:00
Clinicians provide information, patients make decisions - this change is happening fast and nurses and doctors are resisting - its a threat to their power - Steve doesn't want any power over people, because it works for everyone - if patients may make a bad decision and it won't reflect on the clinician
0:43:30
Heavy workload contributes to high rate of physician suicide - a high profile topic at the moment - some research has shown some physicians have committed suicide because of bullying - Steve does a lot of medical education now around patient safety and uses patients as co-instructors - his colleague Sam teaches with him on mental health
0:45:00
Sam was and is a user of services, and Steve was his nurse - they teach the classes equally, they both get paid, there is tokenizing patients - Steve is developing that approach more and more - he often uses anonymized stories to tell about what helped
0:46:30
Patient safety in the UK is an industry, hierarchical - Steve will share stories with his audience in a helpful environment to talk about what would've been done differently - Steve also talks about errors his made - for example, he had a client who was labeled as 'aggressive' and Steve followed the care plan that said this person had borderline personality disorder and hinted strongly she was manipulative
0:48:00
Steve basically fobbed this person off, but came across her a few years later in a different environment with a longer assessment session - Steve realized that the care plan he'd been following, and notes about her, was wrong - Steve managed to get the notes changed, the care plan changed, a note from the psychiatrist and the diagnosis changed, and this person is now a psychologist
0:49:30
Steve has some problems with diagnostic labels - in mental health they can be really unhelpful - a 'working diagnosis' may be helpful if shared with the patient to work together - but that is often not done - and for doctors to get paid, they have to give a diagnosis, ticking a box
0:51:15
Labels come in fads - in early 2000s, it was borderline personality disorder - now its emotionally unstable personality disorder - Steve worked in a place where there were 2 psychiatrists, one often labeled a patient as borderline personality, and the other would label same patient as schizophrenic - the treatments are totally different, and they may not have either
0:52:30
Ticking the box contributes to clinician burnout - pressure to diagnose and create a care plan - Steve was not allowed to spend more time to really figure out what was going on, and that is destroying mental health services
0:54:00
Steve would like to do more medical education - he's involved with an organization called MedLearn with an approach to let patients be their best experts - he supports things that challenge the hierarchy in health care
0:56:30
It is still the norm not to pay patients for their contributions to research - and it is very patronizing
0:59:30
In the UK, patients often have 4 or 5 clinicians, who never communicate in any meaningful way
1:00:00
Steve thinks to change the medical culture, patients have to be brought in - there was a unit that was dysfunctional, lots going wrong - because it was specialist unit, there were patients on the board, and when they found out things were going on, then things changed - so patients on the board would help, and real patients - they don't necessarily have to have board experience, they can learn that - patients need to be in the hierarchy and involved with what's going on in a non peripheral way