Below is the edited complaint we sent to Sheffield's Single Point of Access. A month after we sent this the manager rang and apologised, and six months later they found someone who had had experience of diagnosing DID, we were assessed again and the outcome was DID or P-DID. Our GP has applied for funding from the CCG and we're waiting for specialist psychotherapy.
Our experience of getting diagnosed with DID in the UK.
Amber (our host, alter who lived most of the life) realised and accepted (mostly - doubt is common for those with dissociative disorders) we have DID around January/February 2021. Before that, she's known for years that something was wrong and has been on and off anti-depressants and medication for anxiety for around a decade. We can’t remember exactly how but we think in February we got referred to the Single Point of Access (SPA, the body that deals with all mental health assessments in Sheffield) and were placed on a waiting list for a general assessment.
In March 2021 we started seeing a Mental Health nurse about once a month. At some point he advised us that we were on the waiting list for a general assessment, this was step one and from there we’d be put on another waiting list for an assessment for diagnostic purposes with a consultant psychiatrist.
We called the SPA countless times asking to be transferred waiting lists as we were confident we had DID (it’s the only rational explanation for our experience), they’d had communication from our therapist (who we’re lucky to have and is through a charity), the MH nurse, and drugs counsellor telling them we need to be assessed by a psychiatrist.
The main reason we didn’t want to have the general assessment was we knew how traumatic these can be, Amber saw a psychiatrist in 2016 when she was sure there was something wrong and suspected cyclothymia (similar to bipolar but more rapid cycling). She was with him for over two hours, rehashed every crap moment from the life and was told she had depression and anxiety, which she already knew (he mentioned BPD in the report but Amber wasn’t told that at the time). That led to one of the many significant mental breakdowns she/we had over the years. So, we didn’t want extra unnecessary assessments.
Around July we got a phone call (voicemail) advising us they’d had a conversation about us and we were now on the other waiting list, with no ETA.
In November we got a phone call, was Amber available the next day for an assessment, which because of Covid was being conducted over the phone. Maya took the call and questioned how effectively DID could be assessed over the phone. We got a call back telling us that was how they were doing it and the psychiatrist was able to diagnose from a phone call.
The next day he was over 20 minutes late calling, which anyone with anxiety knows will exasperate an already anxious people. He immediately invalidated Amber when she said she was hoping to get a diagnosis of DID. In the UK our MH system uses the ICD, not the DSM, to diagnose mental health conditions. DID was not recognised in the ICD until the ICD-11 came out on 1st January 2022… a whole month and a half away… Obviously many psychiatrists knew this was coming and have been assessing and diagnosing based on the new manual, not the soon to be out of date one.
Not Dr Sillyman. It was 80 minutes of hell. He invalidated most of our experiences and repeatedly told us DID was too rare for us to have, irrelevant facts like that it’s more common in developing countries (duh) and in women (not sure the relevance of that one as we are a woman). He directed us to leaflets on managing anxiety and sleep. And told us he’d “treated thousands of dissociation patients”, which given his complete inability to talk to one seemed ridiculous.
It was a significant trauma. To add to it we were unable to find out what we’d been diagnosed with for a month. No one would talk to us at our doctors or SPA so we had to wait until we next saw the MH nurse. Before we saw him, he kindly advised us by email we’d been diagnosed with mixed dissociative (conversion) disorder. A psychosomatic disorder we assume Dr Sillyman concluded we have due to the trauma processing experiences Amber described, which can be very physical. When we saw the MH nurse we got to see the rest of the diagnosis and the report, it’s another story in itself… We got “Mixed dissociative (conversion) disorder with traits of multiple personality disorder. ? Mixed personality disorder with traits of emotionally unstable, histrionic and anxious avoidant personality disorder”…
Traits of multiple personality? How does that even work. Anyway, the report basically said we’re a crazy lady who’s convinced she’s got DID because she saw others who had it (she/we didn’t - we didn’t learn of DID until there were several of us and we had experienced and written about the experience of splitting), gave us a “? False memory syndrome” among a lot of other crap, and inaccurate quotes from Amber, the best bit is where he describes how she “became disinterested and started talking as Mia”…. Yep ‘disinterested’, not ‘dissociated’.
So MH nurse advocated for us, telling them we need a second opinion, in person. He was told no, he explained why it was important we got an accurate diagnosis (one valid reason is to access appropriate help), he was told no, we had a diagnosis we could use to access specialist psychotherapy services (they can treat neither mixed dissociative (conversion) disorder or DID and MH nurse has had to apply for funding for us anyway, another palaver of course.)
In March we put together a comprehensive complaint about the assessment we had received (below), which we emailed to the SPA complaints department. A few weeks later the manager rang and apologised profusely for Dr Sillyman's tardiness (we think that was all he could apologise for), he advised us Dr Sillyman was no longer working at SPA, and that they were trying hard to find someone who could diagnose DID to assess us.
In July we got a phone call, were we available to next day for an assessment in person, yes, of course. The memory is a mess of the assessment but Mia basically kicked Amber out of the way because Amber was floundering, and presented her “evidence” - four self published books and a manuscript. He spoke with several of us. We didn’t know how it went for a couple of weeks as when Amber asked what he thought at the end he’d barely started speaking when Berlou (trauma holder) got out and told him he was going to say we’re making it up, cried and ran away.
The outcome was DID or P-DID (OSDD). We’ve been fortunate, it’s only taken us 18 months to get an accurate diagnosis, or around ten years if we count from the first times Amber went to the doctors about her mental health, I guess. Yeah, ideally we’d have done this before we’re 39.
We don’t know what we’re going to do, but if the statistics of 1-3% of people have DID, and 10% have a dissociative disorder, but no one is diagnosing them and no one is treating them, that is huge numbers of people who are not getting the support and help they need, or even the opportunity to recognise these disorders themselves and find alternative help. We believe if we’d known about DID sooner, our system would have been revealed sooner, we could have healed sooner.
We hope somehow we can help others get the help they need. We only got this diagnosis because we were fortunate a Doctor suggested we speak with the mental health nurse, we had him to advocate for us, and ultimately because we were able to advocate for ourself.
~ Caris, Mia and Berlou.