Month: Aug 2018

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.

 

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.