Month: Sep 2018

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.

In the early 17th century Galileo championed heliocentrism, the (now well-accepted) belief that the earth orbits the sun. He was persecuted by the church for heresy and spent the rest of his life under house arrest and forced to recant.

For the last 18 months, the church of medicine – the new religion – has been persecuting me.

Persecuting me for medicine’s abject failures over the last 100 years in understanding many illnesses from ME/CFS and other MUS to psychiatric illnesses.

Persecuting me for having the audacity to have ME/CFS an illness that does not fit, and therefore cannot be understood by, medicine’s flawed epistemology.

Persecuting me for being autistic and daring to think differently and in a way allistics struggle to understand.

Persecuting me because medicine has its head so far stuck up its own arse it cannot see the simplicity of the problem nor its solutions.

Medicine might think the sun shines out of its arse but being that far stuck inside Plato’s Cave (or up their own arses) they cannot see it. They cannot understand and will NEVER be able to solve these problems because of it.

I am an autodidact polymath, a Chartered Physicist, a psychologist and safety systems engineer yet because I am not a medical doctor and my ideas are novel (though only to medicine I might add), I have “bizarre beliefs” and “strange ideas”. I have been said about me, when I’m just being myself and talking about these ideas, that I have an “elevated mood”, I have “hypomania”, that I have “mania” and that I have “mood disturbances” (not said to my face I might add). Subsequently being misdiagnosed as having bipolar affective disorder. All because I have the audacity to be autistic, to be hyper-interested in neuropsychiatry and to question medical orthodoxy. If medicine had their way I’d be locked up, forcibly medicated and told to recant my “bizarre”, “unusual” and “strange” beliefs, truth be damned.

Science, culture and technology may change but there remains one enduring feature of society that of the powerful (medicine) trying to suppress the powerless to maintain their hegemony, to maintain their fragile egos. Even if it means harming everyone else in the process. First do no harm indeed.

You can see my theory below for yourself. A theory for which I received a scholarship I might add. Disagree or do not understand but do not refer to it as “bizarre” or “strange” because you’re embarrassed about not knowing how to think.

Emergent Symptoms Theory

The primary principle of bioethics and medicine.

One might recognise it today as a risk-benefit analysis; the benefit to the patient must demonstrably outweigh the risks. A wise, just and noble principle.

A principle doctors and health professionals throughout the ages were, are and will be proud to abide by and uphold. The Prime Directive of medicine if you will.

First, do no harm.

In my last blog I discussed the adverse reaction I had to a medication. Despite such adverse reactions being common in autists, the risks from this medication were not considered.  In my blog before last, I discussed how I have been misdiagnosed as having bipolar affective disorder because I am autistic, despite withdrawing consent for the assessment before it even commenced. This misdiagnosis has caused me significant distress (and financial harm) effectively denying me access to many medical services because I no longer trust them. When I go to the doctor with a problem they have not once been able to diagnose and assist unless I know exactly what the problem is and what I want.

Autists are more likely to be harmed by medical interventions because medicine does not consider the risks specific to us, we are more likely to be misdiagnosed putting us off seeking future help; and even when we do seek help doctors are more likely to disbelieve our often atypical symptoms and overlook our illnesses. One might think that was quite enough medical adversity but actually there is more and arguable the worst, as it can make accessing health care for me extraordinarily difficult. That is the repeated microaggressions we receive from many allistics but seemingly and bizarrely particularly from allistic health professionals who you would think would know better.

Microaggression is a term that was coined by Chester Pierce (a psychiatrist at Harvard) in 1970, to describe the regular insults and dismissals African-Americans received from others. It is a term used for commonplace verbal, behavioural, or environmental indignities, whether intentional or unintentional, that communicate hostile, derogatory, or negative prejudicial slights and insults toward a marginalised group.

Every interaction I have with a medical professional is negative in some minor or major way. This is very common for autists. Whether it’s a brief look of hostility that flickers across someone’s face when they first meet you, a disbelief in what you are saying or patronising you and treating you as though you are stupid. This is the daily life of autists whose masks aren’t and can never be perfect both within and without a medical setting. Even at the milder end where I say something slightly wrong or in the wrong tone of voice, that slightly worried look flickers across their face. Or when I get asked an open-ended question and their impatience turns to exasperation and annoyance when I cannot answer the question immediately. Include the intersection of gender, race and queerness and the effects are multiplied.

These daily microaggressions exhaust and upset you, and it is particularly hurtful when it comes from the people who are literally paid to care for you. It makes me feel:

• I am not worthy of care

• I am not worthy of love

• I have no worth

• I am worthless

First, do no harm seemingly doesn’t apply to autists. We’re the wrong kind of patient. It is actually worse than that as due to this misunderstanding some health (so-called) professionals provide poorer quality care on purpose or even act in spite. I cannot prove this but I am fairly certain my misdiagnosis arose out of actions by my old GP and the last psychiatrist I saw – both of which I complained about. The former in person and the latter immediately afterwards (for negligence and for prohibiting recording the consultation respectively). I now record all contact covertly. First, do no harm indeed.

I feel I now have post traumatic stress if not PTSD due to how I’ve been treated by medicine in the last 18 months if not all my life because I am autistic. Autists are dying much younger than allistics and the above illustrates some of my problems which others must also be facing, and our early deaths must surely be related. This is a disgrace.

Carrying on with the theme of medical records, I thought I would write about a complaint I am currently pursuing relating to the misuse of my medical records during (ironically) a complaint investigation. The original complaint related to events that occurred in August and September last year (2017) where I contend one of my medications was changed inappropriately.

The consultant I saw was Dr Vincent Lee of The Hathersage Centre, part of the Manchester Royal Infirmary. I said my adherence had not been perfect months before because I had been very unwell (I have ME) but it was like he did not hear me or if he did that he did not believe me, and insisted on increasing my medication dose. I can only guess, given my previous experience with doctors, that this not hearing or believing was because I am autistic. Doctors often misinterpret what we say because they make false assumptions about what we really mean based on their (mis)reading of our non-verbal communications, which because it’s atypical cannot generally be read by allistics.

Although I consented to the dose change (though I did not feel I had any choice) I was never informed of the potential for dangerous side effects, despite these drugs never having been proved safe for autists and Hathersage staff later admitting autists often have adverse events with them. I subsequently had a severe adverse event.

The experience was terrifying as my heart raced to 140 bpm and I could feel my blood pressure rocket. I got tremors, became confused and my pupils went to pinholes, and I felt like my brain was going to pop. It was exactly as I can imagine severe alcohol withdrawals would feel like but without the intense anxiety. I called an ambulance. On the phone to the triage nurse I remembered that I suspected I was getting withdrawal-type symptoms from the medication, so I took more and the symptoms soon subsided meaning no ambulance was required. I then tapered off the medication later switching to a different type of drug. I am now fairly certain I had a bad reaction to this drug because I am autistic.

Autists can have an atypical and worse reaction to drugs often resulting in harm or death as most drugs have not been proven to be safe for autists. The event left me having panic attacks and nightmares for months and has given me permanent brain damage as under certain circumstances, primarily when very tired, I can have visual hallucinations. This was exciting at first but now it’s just tedious, not knowing if some random mildly threatening person on the street is real or not; I keep forgetting to take a picture to find out.

When I called the clinic to discuss what happened, I was treated as though I was making it all up; an experience all too familiar for me. I called again and ended up having to get angry and explaining to them why medicine is flawed and how their certainty in drugs efficacy and safety is misplaced. I am extraordinarily lucid when angry so if you ever meet me and I suddenly start making sense then you know you’ve crossed a line somewhere.

My medication was then changed and I tried complaining formally expecting a chat about what had occurred, an apology and a promise to do better, but nobody called me back. I wrote a letter (attached at the end) which I admit was a little cross, but I still expected a reasonable reply.

Instead I got an intensely obnoxious response, which I believe was mainly from the lead clinical consultant Dr Sukthankar, writing two pages of how perfectly his staff had carried out their duties; one suspects if I had died he would have written exactly the same. Now I could devote a whole blog to medicine’s ridiculous focus on process over outcomes (full of “handle turners” as one might say in engineering) but I’ll save that for another day. Instead I want to talk about my medical records and how Dr Sukthankar misused them.

Dr Sukthankar delightfully trawled my medical record going back over a year to see if he could find something to deflect blame from his clinic. I had reported historic drug use and one time my heart rate was recorded as 100 bpm (I think I had just cycled really hard to get to the clinic on time). Dr Sukthankar, the delightful prick that he is, outrageously said I was on drugs at the time and it had nothing to do with the (mis)prescribed medication.

This is a gross abuse of power and a gross abuse of trust and a clear misuse of medical records. If patients know that doctors will use their medical information against them to deflect blame from their later mistakes then they will refuse to provide such information to prevent such future misuse leading to lower quality care. I naturally complained to the hospital who ignored my complaint and then to the ICO who said that it was not against the law (Data Protection Act) because my medical record was being used for “medical purposes”. This is of course nonsense as a complaint is not “medical purposes”. I have appealed the ICO’s decision and await their response but there is a clear point of principle here as use of a patient’s medical record to their detriment will result in decrease in trust in doctors and worse quality care; a result I am sure nobody wants.

There is a petition for mandatory autism/learning disability training for NHS personnel which would likely prevent such events for others so I urge you to sign.

My appeal to the ICO is as follows:

“The complaint is about your response to a complaint I made about the Manchester Royal Infirmary NHS Hospital misusing my medical record.

In your response you state that consent is not required where it is being used by my healthcare provider. Where I think you have made an error is assuming this is an absolute which it is not. The GMC gives further guidance stating that no explicit consent is required for healthcare services where:

1. The patient anticipates its use.
2. It’s used for the direct care of the patient where direct care is defined as the diagnosis, care and treatment of an individual.

The above makes sense as clearly if a patient can anticipate its use and it’s for the benefit of the patient then consent would be given anyway.

The hospital has in accessing my medical records in the way they did failed on both counts:

1. Although I was notified that my medical record would be reviewed I assumed they would look at the recent events and try to understand why they happened, I could never have anticipated that they would trawl back years through my medical record to try and find historical information to deflect blame from their doctors.
2. A complaint about care is clearly not direct care which was handled entirely separately and in person, one does not obtain healthcare through complaint correspondence. There was in fact no benefit to me in them accessing my medical record but considerable benefit to the hospital (in deflecting blame). This is abuse of power.
3. Even if explicit consent had been given on the basis of the wording provided then it still would fail as the trawling of my medical record could never have been anticipated.

Medical records may also be accessed to audit care, which one might argue a complaint falls under. However, an audit is to confirm healthcare professionals’ actions were correct not to look for medical information to deflect blame from healthcare professionals’ failures.

Ultimately I would appeal to your logic and reason. Patients’ medical records are sensitive and personal, giving those who may access them a lot of power. Doctors are trusted to use that power responsibly. That trust enables patients to be honest to their doctor and in response the doctor can provide effective healthcare. If doctors’ use information in patients’ medical records to deflect blame from complaints against themselves then that is abusing that power and abusing that trust. This will result in patients withholding information and subsequent lower quality care. The GMC guidance recognises this and the law must surely reflect this otherwise medical records and its sensitive personal data are open to abuse.

I hope the above provides a more complete argument but if you do not agree that the hospital misused my medical record and should have sought explicit consent then I will complain to the PHSO and may later seek a judicial review to your decision given it’s importance (unless this concern has already been addressed by GDPR). I suspect the GMC and most doctors would support this. Indeed where I have complained to the NHS previously explicit consent to access my medical record has been sought.”