Glitter Resist

I am restarting my blog about my experiences in society of being routinely discriminated against because I’m autistic. I stopped blogging at the end of 2018 because of the events with the DWP (who provide social security in the UK) and the NHS had broken me to such an extent that it’s essentially taken until now to recover. I am by all accounts not exactly the same as other autistics, I for example held a job as a nuclear safety engineer for 14 years albeit often bullied early on in my career and then later blacklisted at many organisations because of my stance on safety. I am probably not exactly the same because of my high intelligence and other neurological advantages that I have lucked out on. I do not have ADHD or any other condition other than autism, I have never had a serious mental illness or epilepsy, and I’ve never had meltdowns only shutdowns. But I have tended to suffer from so-called Medically Unexplained Symptoms, starting with IBS, MCS and finally ME/CFS which is when my problems really began.

I started to get symptoms of ME/CFS in 2011 and I carried on working becoming more and more sick until I had to give up work completely. I was only diagnosed as autistic in April 2019 but I attempted to get a diagnosis in 2006, and what I have discovered is that because ME/CFS affects your cognition and because social communication for me is much harder then I essentially became more autistic. I find that if I am tired, hungry, overly stressed or in this case sick, then I get treated much worse than I do when I’m not. I used to think that I’m marmite, that is people either loved me or hated me, but now I think when sick I get treated badly and people hate me and when I’m well people love me and treat me better than others.

I have no idea exactly what is going on but I can only assume it’s something to do with my non-verbal communication. I have looked at videos of me when I was very sick and at videos of me when I am much better and I can tell the difference, the first to me I perceive myself as vulnerable, cute and needing to be looked after, whilst the other I perceive myself as charismatic, attractive and confident. This means how people treat me is of no reflection on me, I perceive myself as needing support, but rather a damning reflection of others and our society. A society that values status, unearned respect and deference to authority, over caring for the less fortunate. So as distressing as being mistreated by society is, I like that society often shows me their true colours – I like that I get to see a part of society that most people do not get to see. I feel like I’m in Henry IV Part 1 and I am being shown how badly large sections of society are being treated mostly simply because they are poor. I of course did not used to be poor; I am only poor because I got sick, and I am not going to just put up with allistic bullshit based on fragile egos and prejudice.

On 12^th October 2018, I had my health assessment with the DWP to keep my sickness benefits. The health assessor Ms Eileen Bell, a nurse, then discriminated against me because I am autistic leading to my benefits being stopped. I then experienced extreme distress leading me to break down, to order drugs of the internet to kill myself which did not arrive and to demonstrate my distress on Twitter which was noticed by others.

On 1^st January 2019 I attended Manchester Royal Infirmary due to this distress having been very superficially self-harming. The nurse Ms Katrina Ray then looked and spoke to me with disgust and contempt and when I tried to get her name, she called security. I insisted on talking to the charge nurse Nigel Gillen who then proceeded to try and provoke me into being aggressive, then when that did not work, lied about me assaulting him, and when that did not have the desired effect on me, he had me ejected from the premises and then him and Ms Ray lied about me being aggressive in my medical records anyway, demonstrating that was his strategy from the start. I complained and predictably the hospital colluded with their staff and rejected my complaint, gaslit and discriminated against me further. After these events I was so distressed that I had to be rescued by my estranged parents who then made me homeless a year later.

I then moved to Sheffield on 12^th November 2019 and attempted to recover from all these distressing events and of course my upstairs neighbour then proceeded to demonstrate anti-social behaviours, particularly extreme noise nuisance. I did not want to pick a fight with my neighbour whilst I was very sick so I just put up with it until I could stand it no more and made a very mild complaint about him and was told that he had already been spoken to.

On 11^th August 2021, my neighbour believing I had made numerous complaints about him, assaulted me by charging at me down the steps. The police were called and of course naturally being autistic, I the victim was arrested. The perpetrator basically reversed the events which when I pointed out to the police could never be true, the investigation against me was dropped. I then successfully sued the neighbour and attempted to sue the police for discrimination. The police then persuaded the neighbour to change his witness statement in line with information I had provided to them as part of our civil legal proceedings, and I was consequently charged.

At the time of the arrest, the police failed to ensure that I had understood my rights, because the arrest triggered sensory overload so I was unable to understand anything anyone said thus the arrest was not lawful. This of course means when combined with the fabricated evidence that the prosecution has no chance of success and thus is malicious. The police therefore colluded with the witnesses against someone who is autistic – this is going to be a common theme and I will be writing more about this including from a social psychological perspective. We are it seems much less further away from fascisim, genocide, civil war or anarchy then I otherwise realised if the state throughout and those who work for the state are prepared to abuse their power repeatedly. I intend to fight this abuse by all and any means possible.

In the police station because prior to the arrest I had gone for a long walk and failed to bring enough water, I had sunstroke and dehydration, and unbeknownst to me I had medication-induced acute kidney injury, meaning that at the time I was experiencing life-threatening symptoms. In the cell, I was denied the ability to understand what the custody sergeant was saying on the intercom because he spoke too fast and thus denied adequate toilet paper and being forced to use my clothes instead, denied adequate water. This could have been fatal when combine with my kidney damage. I was also denied access to a solicitor to discuss this mistreatment. I eventually passed out in the cell from this acute kidney injury and when I awoke I had asked for medical assistance but was provided paracetamol only.

The first hearing at the Magistrates Court was on 8^th September 2021 and the trial is on 31^st January 2022, and I am looking forward to the events because it has allowed me to really let rip in my witness statement, and afterwards I will of course have further grounds to sue the police. There’s a lot more going on but perhaps that’s enough for now.

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.

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.

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

Moved to Guides

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.”

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As I’ve said previously, I want to write blogs based on my medical records to illustrate the difficulties I have had with the NHS all my life because I am autistic, but to do this I need my medical records. GDPR (General Data Protection Regulations) came in force at the end of May this year with the DPA (Data Protection Act) amended, meaning that in theory access to your personal data including your medical records should be easier (and free). However, that is not turning out to be the case for me.

I have tried to request medical records and other data from every NHS organisation I have had recent involvement with which includes:

• Langworthy Medical Practice (my old GP) in Salford
• Lime Square Medical Centre (my recent GP though I have requested to be deregistered) in Manchester
• Salford Royal Hospital
• Manchester Royal Infirmary including The Hathersage Centre and Orange Rooms
• Greater Manchester Mental Health
• Queen Elizabeth Hospital in Birmingham

Langworthy Medical Practice have so far ignored all my letters, I haven’t even received an acknowledgment letter and it’s looking like I’ll have to complain to the ICO (Information Commissioners Office) to get a response.

Lime Square Medical Centre gave me my recent medical records (three entries and an awful letter by Dr O Mathurine a psychiatrist from GMMH – see below) but have not acknowledged my request for everything else and again it’s looking like I am going to have to complain to the ICO.

Salford Royal Hospital provided most of my medical record which was very short (as I hardly visited that hospital) but failed to provide what I was actually looking for namely data about my visit to neurology to see a neuropsychiatrist Dr Rachel Thomasson and details about the associated complaint. However, I did get a copy of an awful letter my GP Dr Ester Anderson wrote about me sent to them and Dr Thomasson’s response (see below). I think I will again have to complain to the ICO.

GMMH have failed to provide the requested data but I have had an acknowledgement. One suspects a complaint to the ICO here also will be required.

The QE insisted I filled in a form which I refused (though provided all the information on the form and gave them ID) so it will be interesting to see if they comply without me complaining to the ICO.

So far I have learnt that most medical professionals are incompetent liars but especially mental health professionals. From my medical record my GP Dr Anderson said I have mania, Dr Mathurine said I have hypomania and Dr Thomasson said I had an elevated mood. They think this because I am autistic as they are misreading my moods because I have, like most other autistics, an atypical response to anxiety and stress. I have been off sick because I have ME/CFS, a much maligned illness often misdiagnosed as a mental illness. These are why I have later been diagnosed as having bipolar affective disorder. The fact I believed I was autistic is on my medical record so they have no excuse for the misdiagnosis.

The most baffling was from when I attended Orange Rooms sexual health services with potential symptoms which I was worried about and wanted treatment. The nurse stated I was offered treatment but that I declined and decided to wait until the results came through. This seems like is an outragous and pointless lie. I cannot understand why she would lie about this other than to deprive me of treatment either because I am autistic or because I am being victimised for previous complaints.

So far I have been diagnosed with bipolar affective disorder and depression (which nobody told me about but it’s in my medical record) yet I have no elevated mood (it just looks that way because I’m autistic) and the depression (well occasional dysphoria) was caused by my HIV medication, a drug I am still on and shouldn’t really be given to people with bipolar affective disorder or depression!

I have requested that my medical records held by Salford Royal be deleted which was initially refused on the basis of the “Health and Safety Act 2015”, legislation that does not exist. I pointed this out to them and then argued that as I have no relationship with them then they have no legal basis for holding data about me. My thinking is that if you withdraw from a service then they have to delete all data they hold about you, you can always then rejoin later with a clean slate. It will be interesting if this will work with Primary Care but baby steps. If it doesn’t work then I am tempted to keep changing GPs so my medical record is always a few steps behind and they’ll never be able to view it. If there’s a loophole I will find it!

Notes

ICO – if an organisation does not respond to your request for a copy of the data they hold on you (a subject access request) or you feel the response is incomplete then you can complain to the ICO who is essentially the data ombudsman.

Extracts from my medical record.

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My earliest memory is from when I was a toddler. I remember being on all fours at the top of the stairs having crawled there. I can remember the feel and smell of the carpet and the smile on my face as I peered down into the kitchen at my mum making a cake for my brother in the shape of a clock. It showed 5 o’clock because my brother was five. I am three years younger, making the year 1978 and my age two.

I have hundreds of these early memories (which is common in autistics), more than I can count though it’s difficult working out what order they are in or what age I was unless there’s something external to tell me like a birthday, a film release at the cinema (I remember watching Star Trek I in 1979) or some historic or traumatic event. And would you guess my luck my strongest memory is both historic and traumatic.

I don’t really remember much about the street party for Charles and Diana’s wedding, except it being hot and me going to sleep under my parents chair feeling unwell. My parents didn’t believe me that I was unwell but I guess I had sun stroke from being in the sun all day. I remember nothing between falling asleep under the chair and waking up in the middle of the night alone and in the dark and frightened, so my parents must have carried me home asleep and left me alone at home to go out again. I was five. When I woke, I remember going into my parents room and getting into their bed petrified and hallucinating that someone was coming to get me. In the patterns you can sometimes see in the dark, I saw the shape of a man walking towards me. I was terrified.

From fear and in my underpants and vest I resolved to go find my parents as they were likely not far. I got as far as the street lamp outside my house but to get to the street party street there was a sea of blackness that I’d have to cross. I contemplated running through as quickly as possible to try and find my parents but I realised I had no idea which house they were in, meaning I would be knocking on random doors in the dark. The thought confounded me. As I contemplated my connundrum, kind passing strangers asked me what I was doing and where my parents were. I shyly said “I don’t know but I live here,” pointing at my house. After giving the problem much thought, I eventually gave up and went inside. When I saw my parents the next day I remember the feeling of betrayal, an emotion I was to experience far too often; beginning my schooling in what to expect from others when I am unwell.

Despite this, I had a happy childhood until the age of 10. It’s difficult to know what happened after then but I think it began with my dad being away through work a lot leaving my mum to look after me and my brother, I was 10 and my brother a teenager. I don’t know if my brother is autistic too but he was certainly a very angry and aggressive teenager, which he often took out on me.

He would start by picking on me verbally which would then turn physical until he held me down and I couldn’t move. I would then bite him until he let me go and I’d run and hide in one of the toilets locking myself in with him banging on the door; he destroyed multiple doors multiple times. It happened so often I used to escape through the bathroom window and go round to friends in my socks. Despite me telling my parents they did nothing to stop it.

I don’t really remember how I felt but I remember shutting down and later acting up, sometimes refusing to come into the house and then being dragged kicking and screaming in. I was clearly very stressed and anxious at home and never felt safe when my brother was around. My dad also seemed angry all the time and often verbally abused me whilst my mother needed constant emotional support.

Around about this time, so I can only assume it’s related, I started falling out with all my friends. I remember being reasonably popular in primary school, if slightly shy and eccentric, but this all changed from the age of 10. I guess that I probably regressed because of the anxiety and stress at home and so other kids might have started to sense this and pick on me. It’s possible I took my distress out on others but I don’t remember doing that until later. I was still part of a group so perhaps I just didn’t understand teasing as other kids became more socially aware and I stayed at the same level.

At secondary school everything only got worse and I increasingly became the butt of people’s jokes and I in turn became a bit of a bully. I was actually maturing faster than other children so was pretty strong despite my size. I remember getting into fights and falling out with everyone until by the time I went to grammar school I had no friends. Although I made new friends I didn’t really fit in and was never close to anyone, except one boy who I fell in love with soon realising that I was gay, which added further complications.

So from the age of 10 until I moved in with my much older (and likely autistic) boyfriend at 18, there was no place of safety as I had no relatives nearby nor any friends anymore and it was unsafe at home because of my brother and unsafe at school. I should have started having panic attacks or depression but it appears my brain doesn’t work that way, feeling tired and unwell all the time instead. The stress and anxiety from the age of 10 finally caught up with me but unfortunately medical science has not yet caught up with these medically unexplained symptoms which progressively worsened; turning familial betrayal into institutional betrayal due to my later mistreatment by doctors.