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:
- The patient anticipates its use.
- 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:
- 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.
- 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.
- 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.”
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.
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.
Glitter Resist 