My Diagnosis Experience, Part 4

Background

Despite having sat through my fair share of mental health assessments, I don’t know much about them. As I don’t personally know anyone who has experienced one, and don’t really have many people I could ask about how they work, my knowledge is entirely from what people have said online.

Out of everything I’ve written about in the last few posts, one meeting has always remained in my mind, because it was simultaneously the worst and the best experience I had with mental health professionals.

Having never had anyone to “compare notes” with, I’m going to explain it here, in case it comes in useful for future reference or for anyone else. Again, personal information has been removed.

Meeting

This story starts at the CMS from previous posts, during my third mental health assessment with assessor C3.

As far as I can remember, I wasn’t acting any different from in previous assessments. I was given similar questions to the other times, and answered them the same way. While I was anxious, because I’m not very good with new social situations, new people, or awkward questions (aka, the components of a mental health assessment), I’d got used to what would be expected of me, and knew what sort of topics would be covered.

Letter

After an evaluation, the assessor typically sends a letter to other people in the care system such as a GP, counsellor, or other assessors. This is to keep information clear so everyone is working from the same information.

The letter is the negative part of this story (I’ve attached it below with the names taken out). While the facts are correct, the conclusions are wrong; I don’t know how I came across to lead my assessor to the interpretations she made, but they weren’t true.

NHS024_Page_1_edit
Some of the things she said, such as “does not take responsibility for her actions”, and especially the part about me not knowing what impact I was having on my family, couldn’t even have been logically gathered from the conversation. I’m not even sure how she got to that conclusion, given that people like K1 and especially K2 would have said the opposite.

NHS024_Page_2_edited

I don’t come across too well when meeting new people anyway, but I seem to have gone completely on the wrong foot with C3. Her assessment was the most negative one I read, and it emphasised different symptoms to the others, focusing more on my social differences and negative symptoms. Her impression of me sounds like a very different person compared to the impressions other assessors made.

NHS024_Page_3_edited

When I look at this now, almost two years on, I can see it for what it is; an incorrect interpretation that (hopefully) had no bearings on future treatment options.

But at the time, it hurt to read. Even though I hoped it wasn’t true, everything going on meant I couldn’t conclusively say it wasn’t. I doubted my own interpretation, and my own knowledge of what was going on.

Response

I needed some help dealing with the letter, and I didn’t want to talk to any of my friends because I got worried that her interpretation was right and they knew it. (Now, I know that’s irrational, but at the time I didn’t).

So I took the letter with me to my next Wellbeing meeting, and talked to K2 about it.

K2‘s response was incredibly supportive, and one of the most positive experiences I had.

At the time, we were already composing a letter to the CMS, to give them one source of correct information as things had got confused between seeing so many services at the same time. Emphasis on the we; K2 actually cared about making sure I had input, and checked with me to make sure any information was correct before writing it down.

After we talked about C3′s assessment, K2 added a section to her own response, clarifying her impression of me to correct C3.

“There is one aspect of the Primary Care Liaison assessment letter on which I would like to share my own view; I would say it has not been my experience that xxx smiles inappropriately, more that she can find social situations extremely uncomfortable indeed. I think that anything that might look like a small smile is actually significant tension or embarrassment. Another factor is that xxx can find it quite hard to make sense of social situations…”

Reading this after was such a relief; it felt like she was defending me, explaining what I couldn’t. Simply put, it was validation. I’m thankful that I had someone like K2, who I had got to know long-term, because it meant she could give a second opinion and stop misinterpretations potentially affecting treatment. She would also have been able to dissuade the CMS from talking to my family, a tactic they kept pushing for but one that K2 had enough background knowledge to class as a bad idea.

Thinking about this after was a reminder that our current system of referrals is flawed. It’s expecting an assessor to understand a person’s history in one meeting: a very limited amount of time to cover an area as encompassing as their entire mental health. Given that in many cases people won’t have 100% accurate recall, may not be able to say exactly what led them to being referred, and may not even know what parts of their lives are symptoms and what parts are individual differences, it’s an inexact science at best.

I’m not sure how much of this is outside of the norm for an assessment, or whether I was wrong for feeling weird about it. Either way, it’s an experience that I’m curious about, and would like to hear other people’s stories on.

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