Thread by @NortherlyRose

#Thread
The importance of what’s ‘on the record’.
Personal reflections from an #ActuallyAutistic perspective.
I’ve been thinking a lot about #testimony and #truth
Zoe Zaremba’s death was investigated by a coroner this week, and the many injustices she suffered were recorded.
1/

It’s a hollow kind of victory when the truth only comes out after someone dies, but it still matters that the truth prevails over lies.
Zoe fought so hard for justice during her life, and the fight goes on, galvanised by an inquest which recorded just how badly she was failed.
2/

The fact that the mental health trust was only properly held to account after Zoe’s death highlights a significant problem.
Being believed, and getting justice, can be incredibly difficult if you happen to be #ActuallyAutistic
#AutismAcceptanceMonth
#AutismAcceptance
#autism
3/

Zoe was very clear about what the issues were.
She had considerable insight, as well as capacity.
But the fact that Zoe was autistic, and had been misdiagnosed as having a personality disorder, meant that what she said was seen as unreliable.
This was ‘testimonial injustice’.
4/

Being seen as an unreliable witness about your own lived experience is one of the most damaging things a mental health service can do to someone.
I should declare a personal interest here.
Just before and after my #autism diagnosis I tried to access #therapy for past #trauma.
5/

I was under the same mental health trust as Zoe.
My experience mirrored hers in that I acquired a label of EUPD and found out about it accidentally.
This was devastating. Not because having a personality disorder is bad but because people who have them are treated appallingly.
6/

As a former mental health social worker I had witnessed this myself.
And I knew that even ‘complaining’ might be taken as further evidence of my EUPD.
I was faced with a terrible dilemma, but like Zoe I disputed the ‘diagnosis’, and demanded to know how I had acquired it.
7/

The fact that I’d been a mental health professional seemed to influence things.
I was too upset to speak, but my partner phoned to complain and they quickly backtracked.
He was told my case notes were typed over someone else’s and parts of the original record weren’t deleted.
8/

The casual incompetence of this appalled me.
I was also somewhat sceptical.
Were they simply backing down because they’d realised who they were taking on?
I was tipped into crisis by this incident.
It caused me iatrogenic harm.
But I stopped short of making a formal complaint.
9/

That was because I’d met other people on Twitter who’d been through the complaints process with the same Trust.
They warned me of the likely consequences of a formal complaint and I didn’t feel sufficiently robust so soon after my autism diagnosis.
But I couldn’t do nothing.
10/

I had to put something on record to try and prevent the same thing from happening to other people.
So I contacted the Clinical Commissioning Group my CMHT came under.
I had a long conversation, which became a statement.
Last week I read this again for the first time in ages.
11/

This statement covers the whole saga of my initial referral to #IAPT by my GP, and subsequent ‘escalation’ to the #CMHT because IAPT had no insight into autism.
I was only seeking therapy for past trauma.
I ended up with a false record, feeling like I was stuck in a quagmire.
12/

My patient record got corrected almost immediately, but it still caused significant harm.
Zoe battled for 19 months to get her EUPD misdiagnosis amended.
She was trapped in a snare where the harder she struggled the more damage was done.
Her pain and anguish are unimaginable.
13/

Even after Zoe was assessed by a personality disorder specialist who decided that she did not have one, the community team asked for this decision to be reviewed.
EUPD is an incredibly sticky label and difficult to get rid of.
It determines how you’re seen, and get treated.
14/

The cool detachment and lack of empathy I experienced in sessions with a psychology assistant were consistent with having an EUPD label.
I wonder if its appearance in my notes really was an admin error?
I’d better not dwell on that too much in case they think I’m paranoid.
15/

It’s hard not to be suspicious of a service that struggles to be truthful.
Zoe’s mum said she was slandered in her notes, lied to and about, and mistreated by staff. She’d said "I cannot live in a world full of lies”. Truth and honesty were the most important things to her.
16/

Openness and transparency are important aspects of justice so it is not only done, but seen to be done.
The coroner reached the conclusion that:
"Zoe died by suicide contributed to by actions and inactions of mental health clinicians entrusted to keep her safe…”(continued)
17/

“…in a care system which was underdeveloped to manage an autistic individual with complex needs".
He also concluded that Article 2 was engaged in Zoe’s case.
Article 2(1) of the European Convention of Human Rights states: “everyone’s right to life shall be protected by law”.
18/

The coroner found that the positive duty and the operational duty to protect Zoe's life and provide her with adequate care had been breached by the mental health trust.
I’m pleased to say the coroner’s conclusion isn’t the end of the matter but the start of another process.
19/

The coroner stated that he will be sending a Section 28 report to the secretary of state, the minister for mental health, the North Yorkshire CCG, and NHS England.
The purpose of sending a Section 28 report is to prompt action to prevent future deaths.
legislation.gov.uk/uksi/2013/1629…
20/

The coroner said that he would write to the mental health trust concerned suggesting that they collect and analyse data on #ActuallyAutistic patients.
The coroner also said he would recommend that all autistic patients who are labelled with #EUPD are reviewed and reassessed.
21/

Zoe was misunderstood and mistreated simply for being #autistic.
Her need for time to process information was misconstrued by the mental health service as being uncooperative.
Zoe was an intelligent, insightful woman who saw all too clearly the injustice she was subjected to.
22/

Zoe deserved so much better than this.
My experience and that of other autistic people shows that her experience wasn’t unique.
It’s the stuff of nightmares to seek support and be harmed by those who should be helping you.
One of the biggest hurdles is simply being believed.
23/

Zoe’s mum Jean gave such powerful testimony about her daughter at the inquest and to the media.
Zoe’s friends attended the hearing and faithfully reported what was said.
These were acts of great love and integrity.
It’s important to set the record straight.
#AutismAcceptance
24/

As you can see from @Shame_On_TEWV’s Twitter threads #ZoeZaremba’s inquest explored what happened to her in detail.
The coroner also touched on how #MentalHealth services respond to #autistic people more generally.
This has to make a difference.
We must make sure of that.
25/ end

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