UoS Scholarship Application – Goals

Medicine is epistemologically, ontologically and structurally flawed. This is because it assumes pathology and mind-body duality. These are Cartesian epistemological assumptions and socially constructed ontologies. Cartesian epistemology is reductive; assuming linear causality, and that if you break a problem down into its component parts then you thus understand the whole. Such assumptions are false for emergent phenomena. If symptoms are emergent arising from emergent failure modes, then such reductive assumptions will prevent understanding.

The first ontological problem is that the line between the normal and the pathological is defined by medicine. If symptoms arise from some new mechanism that medicine does not consider to be pathological (e.g. an emergent failure mode) then it will fail to see it, because it’s not looking for it.

The second ontological problem is related to mind-body duality. Nosology for the physical and psychological is seemingly entirely socially constructed from the medical gaze, i.e. for the benefit of medicine. So illnesses with measurable signs are physical, whilst those with observable signs are categorised according to the current politics of the day. So migraines that often cause depression are physical, whilst depression that often causes headaches is psychological. Illnesses that were once considered psychological suddenly become physical once medical technology advances such that it can detect measurable signs. For Medically Unexplained Symptoms (like ME/CFS), there are often neither measurable nor observable signs; the cruelty and perversity of medical nosology is thus harshly exposed.

Pathology and mind-body duality are therefore not only epistemologically flawed (if the symptoms are emergent) but also prevent understanding due to the political nature of the decisions that underlie them.

Finally, structurally, as medicine assumes Cartesian epistemology then it prioritises Cartesian methods, i.e. experiments, over all other scientific methods. If the symptoms are emergent arising from emergent failure modes, then such Cartesian methods (experiments) cannot easily be used to understand non-Cartesian (i.e. emergent) phenomena.

The failure of medicine to understand many illnesses is therefore:

  1. Epistemological because it assumes Cartesian epistemology.
  2. Ontological because it fails to appreciate the socially constructed nature of pathology and the physical/psychological.
  3. Structural because it prioritises methods that cannot be easily used to understand the phenomena it is trying to investigate.

Medicine therefore needs to prioritise (weak) emergent epistemological methods, i.e. modelling supported by fundamental biological research.

I want to address the above through a PhD and/or papers covering the following areas (a Masters is the first step needed to achieve these):

  1. Philosophy of medicine critique from above.
  2. Introduction of methods from nuclear safety engineering for identifying potential emergent failure modes.
  3. Application of methods to the neuron and synapses.
  4. Model generation.
  5. Modelling of emergent failure modes (e.g. synapse: upper resonant instability, lower resonance)
  6. Application of model to ME/CFS etc, PTSD, bipolar, depression, schizophrenia/psychosis and epilepsy.
  7. I am also interested in patient safety.

The above has the potential to revolutionise medicine, potentially leading to cures for many currently incurable illnesses, relieving the suffering of over a billion people globally.

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Important Questions on Prescribing

Important Questions for Manchester University NHS Foundation Trust to Answer

Dear FOI,

I would like the following questions answered:

1. Some medication is contra-indicated for some conditions. How do clinicians identify these conditions, e.g. verbally from patients or from medical notes?
2. Does your trust have access to the full GP medical records of patients and if not why not?
3. If your trust does not have access to the full medical records then how can you otherwise assure patient safety?
4. If you are relying on patients telling you of their condiions then how can you be said to be fulfilling your duty of care?
5. How do you approach likely diagnoses where medication is contraindicated for such a diagnosis, e.g. often correct MH or other subjective diagnosis may take some time?
6. Diagnoses can change or new diagnosis can occur since first admission for a chronic condition, how do you assure patient safety in these instances, i.e. they may be on a medication that is contraindicated with their new diagnosis?
6. How do you assure safety of understudied groups, e.g. autists or ethnic groups or indeed women for which studies often are not specifically carried out on?
7. How do you assure safety of patients when harms are anecdotal especially given 6. above where such studies of these groups are limited?
8. Can I be sent any procedures associated with the above?

Regards,
David Scott

Bad Faith

Manchester University NHS Foundation Trust has responded to my complaint about the harm they caused when Dr Vincent Lee (who practices at Hathersage Centre in Manchester and Orange Rooms in Ashton-Under-Lyne), prescribed a medication that he knew (or should have known) caused harm to autists. This harm was psychological and there was also brain damage, manifesting as hallucinations. In their response they refuse to accept this or to respond to my recommendations for improvement. Like all of their previous responses, this is yet another bad faith response; indeed several months later, they have still not complied with my subject access request fully. Another demonstration of their bad faith. I now suspect that they hold a list of patients whom have made a complaint that they withhold data from following a subject access request.  At the end of their letter, they essentially make unsubstantiated allegations of defamation, another bad faith response.

They need to demonstate they are acting in good faith by:

  1. Accepting they caused harm and responding to my recommendations.
  2. Complying fully with my FOI and subject access requests.
  3. Either identify where they feel they or their staff have been defamed, exercise their right of reply or withdraw the allegation of defamation.

My full response is included below and their response as a PDF attachment.

Dear Toshi,

Thank you for your response to my complaint.

You continue to refuse to accept that medication that was prescribed to me by your staff caused me harm and therefore consider improvements you can make to prevent that harm to others. I cannot see how this disagreement is surmountable. Ultimately I feel that you have acted in bad faith throughout the entire complaint process and I cannot see any evidence of any change in your approach in any of your responses.

You then make some serious allegations of defamation (libel) but fail to identify where you feel your trust or your staff have been defamed. For you to claim defamation you would have to argue that:

1. What I have written is factually untrue
2. What I have written goes beyond honest opinion
3. What I have written has caused significant harm to reputation or otherwise.

Your claim fails on all three counts.

Even if the above arguments were successful then I would still be able to demonstrate that I attempted to avoid any defamation by offering you a right of reply which I have done so repeatedly yet you have never responded to. If what I had written had been so damaging then a court would ask why did you wait months to provide notice of damage and even then fail to identify where you feel the damage occurred. In the future I would suggest you restrict your claims of “duty of care” to medicine and not law, which is clearly not your area of specialism.

Given all of the above, I can only assume that your claims of defamation are an attempt to intimidate me into silence (which may be unlawful), which I can assure you will not succeed. This type of tactic is again responding in bad faith.

In order to move forward and for you to confirm you have good faith intentions then I will consider a meeting providing you do the following:

1. Provide me with all my data relating to the complaints I made including all reports, emails, interview records and handwritten notes.
2. Provide me with the list of patients (however this data is held) for whom [I suspect] you are withholding data because they made a complaint after they made a subject access request.
3. Identify any areas in my blog or otherwise that you feel is defamatory and why and/or respond to your right of reply. I will consider changing anything if you feel it is factually incorrect or is not honest opinion (I had removed some recordings and pages as a courtesy because of the legal action but I will now reinstate them to demonstrate I will not be intimidated).
4. Alternatively withdraw the claim of defamation.

I will continue to covertly record most of my consultations and publish them with comments. I had in fact not identified individuals and clinicians in the covert records out of courtesy but seeing as you have accused me of doing this (a bad faith accusation) I will now identify these individuals as I am entitled to do. I am happy to remove their names again once you apologise for making this false accusation and respond to my above issues surrounding bad faith.

I understand that you want to hold a meeting with me which I would be open to, accept [sic] that you are continuing to act in bad faith, so until you start acting in good faith (see the issues above), I can see no benefit in this.

So you need to:
1. Respond to my FOI and subject access requests in full
2. Identify defamation or provide a right of reply or withdraw the accusations of defamation.

Ultimately if you honestly feel I have defamed your trust or individuals then I suggest you initiate legal action immediately.

I look forward to not receiving a letter from your solictor in the future.

Regards,
David Scott

 

 

Conspiracy to Withhold Medical Records

The NHS are deliberately withholding data relating to my complaints. So I have sent them this email.

Dear All,

I have requested all data GMMH hold on me under GDPR as implemented in the Data Protection Act 2018. I have been ignored and then told I was sent a letter and data 3 months ago that I did not receive until last week. This data excluded all the data, medical records, emails and documents related to a consultation I had on 25th October 2017 and subsequent complaints I have made. I am also told some of my data has been destroyed despite me specifically requesting such data previously. Further, I have requested all data MFT hold on me and again the data relatating to complaints I made have been removed for the data released. These are clearly deliberate acts.

I can only conclude that GMMH and MFT and GMCSU, i.e. everyone to whom this email is addressed, are conspiring to withold this data to prevent me pursing any complaint further. This is illegal and a disgrace. I suspect that I am not the only person to which this strategy is being applied and therefore assume there is a list of people and the data you have been told to withold. This list may be in a document, an emal, a database, written on a whiteboard or in a personal notebook and I am therefore making a FOI and subject action request for all these lists.

When I receive these lists I will be sure to forward it to the ICO for the purposes of prosecution and I will also forward it to national and local media. I will make sure I name every single individual II have been in contact with who has been deliberately obstructive. I imagine the headlines will be quite interesting, whilst the media attention on you as a person and organisation less so.

I would advise you to forward by data asap less this becomes a political national issue instead of a local and personal issue.

Also GMCSU, please note that I request all data *YOU* hold about me (emails, notes, etc) where you have communicated about me with both MFT and GMMH. Welcome to the party.

Regards,
David Scott

GMSS (GMCSU) Response

Misdiagnosis

stock-photo-veterinary-cartoon-about-a-dog-the-diagnosis-is-not-chronic-fatigue-rather-the-dog-is-just-dog-362043890

From the symptoms listed in my medical records historically from 2003 to 2011 multiple MUS are reported including, IBS, MCS, atypical face pain and later tinnitus. Such symptoms are strongly indicative of the potential for ME/CFS and indeed (though it’s poorly recorded in my medical records) I repeatedly attended GP’s for fatigue and malaise prior to becoming more seriously unwell in 2011. All doctors ignored all this compelling evidence for a MUS-related illness, instead attempting to fit (often made-up) symptoms to a mental illness diagnosis.

From 2011 onwards there are similar MUS symptoms reported including sensitivity to many drugs, and later concentration worsening symptoms. Such experiences are very familiar to ME/CFS suffers and indeed worsening of symptoms following concentration (mental exertion) is listed as a key symptom of ME/CFS. None of these are symptoms of Bipolar Affective Disorder, and there is no evidence that clinicians considered ME/CFS or anything other than mental illness. There is no mention in the medical records of my stated malaise or of me feeling unwell (like how you feel like inside with the flu was my description), nor of the fatigue or brain fog or palpitations, all of which again would have again pointed towards ME/CFS and not Bipolar Affective Disorder.

Further, I reported when I triggered the symptoms feeling inside like I was on the motorway and the foot had been taken off the accelerator which I now know was orthostatic intolerance, and there was no exploration of such description with the assumption that I was referring to mood. It appears that medicine had decided I was mentally ill and looked for symptoms that would fit this collectively decided diagnosis, irrespective of the facts or the iatrogenic harm that would be done to me. Far be it for me, a mere patient, to know their own body and to know their own mind but they essentially ignored everything I was saying imposing an unasked for mental illness diagnosis (because I know what nonsense psychiatry is). Repeating the violations that psychiatry often inflicted on other gay men in the past and mirroring similar violations that occurred in my childhood.

I now know everything went wrong after a consultation in May 2012 where the doctor wrote that I said I was suffering from “’attacks’ of mania”. I have never heard of such an expression and when reading this entry in my medical record I was astonished that a single wrong entry from years ago could cause me such problems later on. She even uses quotes for ‘attacks’ to imply she’s quoting me. Unfortunately what she states is simply untrue. I never said “’attacks’ of mania” and nor would I ever have said such a thing, as it would ruin my career. At the time I was working earning £100k/year and was to continue working for another two years. It’s completely ludicrous to believe that I would say that knowing that the security vetting agency could later read my medical records. Indeed because of this factually untrue statement a doctor later wrote to this vetting agency stating I reported suffering from “’attacks’ of mania” contributing to my career being finished. I can state categorically that her statement is factually untrue because unfortunately for this doctor my partner was in this consultation. He can confirm that I have never used the phrase “’attacks’ of mania” and nor did such a description describe my illness. He also said I never mentioned irritability, another word I was reported as saying that’s been added in for good measure.

Later in 2014, another doctor in another city reports me saying the exact same phrase I did not say two years ago. It appears if you mention drug use then doctor’s assumes you are mentally ill; pure prejudice and ignorance. This doctor then adds depression for good measure, reinforcing the mentally ill symptoms I never said I had. It’s like a game of Chinese Whispers with doctors, each hurriedly adding and compounding the initial mistake, ignorantly (and incompetently) ruining the lives of their patients.

From then on and particularly after I am forced on to benefits, everything I do and say is interpreted as though it’s mental illness related, from the amount I say to how quickly I speak to what I talk about (and the inability for ignorant doctors to understand it). I mentioned insomnia, dysphoria and akathisia and there is no evidence any doctor considered that these were caused by my HIV medications, despite specifically requesting what drugs I am taking. This failing is particularly disgraceful.

I at no point complained to doctors about depression or mania, yet because I have an illness they are either unfamiliar with or dislike and because I am autistic so my body language is atypical (causing them to misread me at best and dislike me at worst) they categorise me as mentally ill. There is no objective evidence that I have or have ever had mania or depression or otherwise, and indeed the neuropsychiatrist confirms she made no diagnosis (whilst prescribing medication that would trigger my ME – a fact she even states earlier in her report!). It might very well be that my mood goes up and down but it’s no more or less than before I was unwell, and it has nothing to do with why I am disabled, which if you actually look at the symptoms1 is because I have ME/CFS.

1 I have had many more: gasteroperesis, sleep apnea, stomach ulcers, migraines, muscle pain, orthostatic intolerance, POTS, sore throats/difficulty swallowing.

Violation

My work capability assessment did not go well. For the interview, I had brought a fit note from July which diagnosed me with mood disturbances and a letter stating that I had been diagnosed with bipolar affective disorder from October 2017, which I had obtained from a GDPR1 request. Neither my GP (Dr Haq) nor the psychiatrist (Dr Mathurine) had the courage, courtesy or decency to state this to my face leaving me to find out in July by reading my documents. I do not have bipolar affective disorder.

I could not understand why a neuropsychiatrist and a psychiatrist both thought I had an elevated mood and it appears it’s because I am autistic. The main reason originally I wanted to look at my medical records is because I thought that hypochondriac had been written there and that would explain why my attempts to access healthcare nearly always failed. But it appears they are treating me badly for an even worse reason. I wrote to my GP’s practice detailing all of this, explaining that the misdiagnosis is because I have ME/CFS, a much maligned illness by medicine, and because I am autistic as doctor’s often misread our mental states. Writing this letter set off my ME meaning that there was no possibility of me being well enough in time to start university this September, putting my life on hold because of medicine for yet another year. I deregistered from my GP in disgust. The only positive to come out of it is my near certainty that I would be diagnosed with autism and to finally have an explanation for medicine’s poor treatment of me.

With these documents in hand, I had felt quite confident before the assessment because I thought I would score 15 points again because although I was much improved since last time, I still have essentially the same issues. However, the assessor I got seemed much more hostile than the previous one and I began to feel anxious. I tried to explain the problems I have been having with the NHS but she kept referring to self-diagnosis and how these hold little weight. I began to regret my policy of “just-in-time” anxiety as in this case it appears to have been “just-too-late”.

I said I do not have bipolar affective disorder yet she asked if I had taken antipsychotics and I felt the combined force of the state’s boot on my face. I said that they would have set off my ME/CFS and that my intolerance and sensitivity to drugs is written throughout my medical record. She asked why I had not been tested for ME/CFS and got a proper diagnosis (showing she knows nothing about ME/CFS) and I told her that I have been traumatised by the NHS and in any case I have tried repeatedly but I get nowhere as I am now in the mental box so they no longer listen to me (not that they listened to me before).

Despite me telling her about PEM2 and the issues I have with concentration, she asked why I had not gone to university in September. I kept stressing the mental fatigue, brain fog, headpains and concentration issues yet she did not seem to be listening. She asked what time I got up and I said 3 and she asked if I went back to sleep and it took me two days to realise she thought I meant 3am not 3pm. Then at about 45 minutes into the consultation she started asking about how I got to the assessment centre and I told her I walked and it had taken about 1 hour 45 minutes. I then started to internally panic triggering emotional and sensory overload causing dissociation because as I have no physical disabilities then I would fail my WCA forcing me into destitution and homelessness as I am unable to work. I would not survive on the streets being autistic and having ME/CFS so it would essentially mean death. I am writing this because I still fear that to be the case.

I told her in the interview that I was dissociating, I had this intense urge to escape, but she said she was nearly finished and carried on. The only word I can use to describe how I felt is violation. I feel violated at having been forced to continue in an intensely vulnerable state whilst I was dissociating and would describe it as like being tortured. I felt like I couldn’t control my facial expressions and that it was stuck in a grimace. I had to read her lips so I could understand what she was saying as my ability to process auditory information vanished. I was not capacitous.

When I left the interview I was very distraught. I remember tweeting that it had not gone very well and I felt intensely anxious and fearful. I thought that was it I am going to have to kill myself and indeed when I got home I started writing a will. As I walked home past Picadilly Station and parallel to the Ashton Canal, I passed the Urban Village Medical Practice, one of those new city modern practices with a large NHS sign on the side. Looking at that sign with those three blue letters on white background I felt nothing but disgust and betrayal.

1General Data Protection Regulations

2Post-exertional Malaise

The WCA assessment can be found here and the after effects of this poor WCA can be seen here.

Strange Ideas

This blog relates to a consultation I had with a GP Dr Anwar Haq who practices at Lime Square Medical Centre in Openshaw Manchester on 17th July 2018 which I recorded and obtained the notes which you can listen to and read here.

It’s been a strange experience reviewing my medical notes and discovering the effects of the medical gaze first-hand, particularly when I get to view myself as both object and subject as I have my memories of the consultation, the recording I took, and now my medical notes.

The notes demonstrate the power of the physician to construct and distort the reality of the consultation. The physician’s perspective reigns supreme whilst the patient’s is relegated to mere footnotes or even erased entirely.

The superiority of the physician (and hence inferiority of the patient) must be reinforced.

The physician does not fail to ask about symptoms rather it is the patient who fails to explain them.

Patients merely SELF-diagnose and SELF-medicate and any such attempts are to be frowned upon and discouraged, preferably with a sarcastic remark about googling one’s own symptoms. One cannot have the patient diagnosing and treating themselves.

Only doctors diagnose.

Only doctors prescribe.

In the new religion, only doctors can identify and forgive sin, prescribing the punishments to appease the god of health.

It is the patient who “expresses different strange ideas” not the physician who lacks knowledge or competence or understanding of these ideas.

BUT “strange ideas” are not clinical opinion, they are not even honest opinion.

Honest opinion would be that the physician does not understand the ideas, or that they disagree with them. Or indeed that the ideas are nonsense or twaddle.

“Strange ideas” crosses the rubicon from honest opinion to objective fact. Ideas are either objectively strange or they are not.

Just because the physician finds them strange does not make them so.

Just because the physician means to express opinion does not mean they cannot, drunk on their own power and arrogance, float into the choppy waters of objective fact.

In the past this misrepresentation of the consultation, of the facts and of reality would go unnoticed and unchallenged.

But it’s 2018.

GDPR (as enacted by DPA 2018) is in force. Patients can EASILY check their medical records for free at anytime. Mobile phones can secretly record and are owned by nearly everyone. Tiny little spy audio and video recording devices are easily and cheaply available to make covert recordings.

This deceit and conceit is no longer tenable. The physician can no longer position themselves as the authority, as superiority. They can no longer construct reality for their own purposes and benefit.

This can only be a good thing.