Two men and five women participated. Five participants identified as White British; one woman identified as Black British African and one man identified as Chinese. Two participants were recruited through a National Health Service trauma service, a Women’s Centre, and IAPT services. One was recruited through a specialist charity. Most participants were interviewed between 4 days and 4 weeks after their assessment. However, in one service, we were obliged to interview women after they had completed therapy, meaning that their assessments were between one and three years prior to the interview.

Rich discussions with the Advisory Group led to substantial validation of the core themes, particularly ‘respect for the journey’ and refinement of some sub-themes, such as the ‘balancing act’ between withholding and sharing at the heart of the negotiation taking place within assessments.

Findings

Through the survivor-led analytic process, we saw participants’ experiences as a journey leading to the assessment and its aftermath. Their journey might begin with difficult experiences in childhood or early adulthood, continue through recent and current life events, leading to a decision to seek help. The assessment could then present a formidable hurdle or potential opportunity. Consequently, the assessment becomes the present-day focal point for the emotional weight people have been carrying, giving rise to the build-up of complex and difficult feelings.

We describe this journey in three parts: the emotional weight of the journey to the assessment; the assessment itself and the need to find respect for the journey; and the aftermath, with its potential for hope alongside a sense of exposure and deconstruction.

Trauma and desperation

Most participants described past experiences of trauma and abuse, revealing a complex history of childhood abuse or neglect and experiences in adulthood, creating a build-up of feelings and emotions that overwhelmed their capacity to cope in the present.

“and…because with my case there’s several things; it wasn’t one you know incident led to this, it was several things and um…with er, partly um, ... emotional abuse or emotional neglect—or actually he just called it ‘neglect in childhood’. [in-breath] And all this has just cooked up this big mess.” Participant 2

The effects of past trauma often made it hard for people to cope with daily life: flashbacks and memories, irritability and temper, panic, hearing voices, hallucinations, lack of sleep and drinking too much and/or eating too little.

Feelings of shame and self-blame associated with past abuse and trauma, had prevented some people from seeking help for many years. The feeling of shame was most commonly associated with past sexual abuse or domestic violence.

“So you feel this shame, over the years I’ve just been holding things, suppressing, suppressing, and that’s why I now have to deal with this thing in a bigger way because half the time it’s been suppressed, or you are not heard properly and given the right treatment.” Participant 4

Several participants talked graphically of a period of desperation before seeking help. One woman described losing ‘my marbles and my body and everything’ (participant 4), as she progressively lost weight and lost touch with hers. One man used the powerful metaphor of walking around with a prosthetic leg to describe this period of gradually realising that he was, in effect, psychologically disabled and needed to take action.

“[...] and I’ve had this prosthetic leg for 20-odd years um, wearing clothes no-one notices that I’ve got a prosthetic leg because I know how to use it, I know…it just, it’s just part of me and everyone recognises me as a person with two legs. [...], and the pretence of being normal or having…you know, all four fully-functional limbs is becoming harder and harder.” Participant 1

A common difficulty was the effect of trauma and distress on people’s relationships with friends and family, and particularly children, a factor that became a strong motivation for seeking help. One participant was worried about making ‘the same kind of mistakes that my parents did’ and that his relationship with his child might deteriorate if he did not seek help. Another participant described the pressure to appear ‘normal’ in front of her children.

“My kids are at school. I don’t want to be letting them see this vulnerable side all the time. I wanted them to come back home to a normal home, so just before they got back, I felt like I was putting on this front and it was killing me because I wasn’t necessarily being myself, but I didn’t want them to suffer anymore.” Participant 4

The trauma in someone’s past was often brought to the surface by a life event or crisis in the present, such as violence from a partner, illness, bereavement or the age of a child. This could mean that present life became disrupted by memories, overwhelming feelings and flashbacks.

“You know I’ve been dragging this shit round since I was [in-breath] a teenager; I can’t…I’ll be in January, I don’t wanna keep dragging it around and round. It’s had enough and I want it over.” Participant 2

Fear of judgment

For most people, the assessment became the present-day focal point for the desperation and accumulated trauma of a lifetime. This placed an enormous weight of anxiety and anticipation onto the assessment: to reveal something deeply personal and sometimes shaming, to risk being judged and yet to prove themselves worthy of help. This weight of anticipation was exacerbated for those who had already waited years to seek help. The prospect of talking to a stranger about traumatic experiences and feelings was daunting, particularly for those revealing things for the first time. Some spoke of their expectations or hopes for change. One woman described wanting to find a space where she could finally be honest about her experiences and feelings:

“I think I was really looking for a platform where I could be really honest. [In-breath] Um, I tried the speaking to people at … church … but you can’t always be like completely honest. Um, talking to family you can’t be honest because feelings are hurt. [...] I just needed to just be messy and I, I don’t feel actually there’s any other way you can be messy.” Participant 3

The predominant sentiment expressed about the assessment was the fear of being judged, scrutinised, potentially found wanting or unworthy of therapy. It was likened to facing an exam, a job interview or work appraisal, in which judgment would be inherent. The sense that the assessment had the potential to provide hope and help or rejection, gave it considerable significance and power.

“this assessment… feels like it’s either hope or it’s the end. Absolutely. It is. It’s gonna make or break you; it’s, it’s such a big deal by the time you get there.” Participant 2

Two participants described how past experiences of trauma and abuse eroded their ability to trust other people, particularly in the context of assessment or judgment. They expressed concern that people with abuse histories could be re-traumatised by the lengthy assessment processes and the potential for being judged, and might never get to an assessment:

“It’s difficult enough as it is to even come out to talk to somebody about it and then having to do all these other things it seems... if you don’t have the courage or personality or tenaciousness to go through these things then you will never be able to get any help. And, like, I’m quite sure quite a lot of people don’t.” Participant 1

The assessment: respect for the journey

The strongest theme to emerge from the assessment itself was the need to have the emotional weight brought to the assessment, from sometimes extended journeys, respected and given space.

“And when you eventually do get in front of somebody, as long as respect is paid of the journey that person has been through […] I think as long as they understand that it’s safe.” Participant 2

Respect was characterised by a sense of the assessor coming alongside the person in direct contrast to their fear of someone sitting in judgment over them. People talked of appreciating authenticity, compassion, the assessor being ‘human’ and showing ‘genuine concern’ or making ‘human connection’ with them.

“So, for me personally I felt that’s the first time I’ve seen somebody who I thought ‘you are actually listening to me and you can identify that I need further assistance’. Something that I’d had to live with because no one was really picking it up and being able to help me.” Participant 4

The search for trust and safety

Many interviewees expressed a desperate need to be able to trust and to feel safe, intensified by the accompanying fears, shame and self-doubt that made safety and trust so hard to achieve.

“I just felt really comfortable. I felt this, it was like a gut instinct that I knew that I could trust this woman. I knew that there was no judgment, that I could talk to her openly about everything that had happened.” Participant 5

A significant building block for establishing trust was the assessor’s authentic validation of traumatic experiences, whether simply believing them to naming something that had previously remained unnamed. This had the power to contradict the fear of judgment described in the build-up to the assessment. Compassionate validation of people's experiences re-framed feelings and behaviours as understandable responses to trauma, enabling people to begin feeling believed and worthy of therapy.

“She would say to me ‘no you are not crazy it is part of the impact of what you are going through’. And that started making me feel a little bit more normal because I started isolating myself because I was scared how people would judge me. To be told that this is normal, this is acceptable, normal and acceptable in the sense of what you are going through made sense.” Participant 4

The wider service could also engender trust, for instance where the environment conveyed a ‘homely’ feel:

“if I went there and it was like a really sterile kind of like clinical environment that wouldn't kind of work." Participant 1

For others, it was sharing clear and transparent information and demonstrating reliability: being ‘true to their word’ (P4). Even a long wait for therapy could be ameliorated by an assessor being ‘painfully honest’ about resources: ‘there’s nothing worse than not knowing what's happening’ (P2). Some assessors were praised for explaining the entire assessment process and the nature of therapy.

Many people referred to assessors’ personal qualities and skills as helping them to feel fully heard and safe enough to disclose: that they were friendly, approachable and yet professional. They also appreciated their expertise; for example, their trauma knowledge.

Most women preferred to speak to, and have therapy with, a woman, particularly if they had experienced violence and abuse. Being in a women’s centre could create a feeling of refuge:

“So, yes, I certainly wouldn’t have been able to open up if it was a man. Just it being a woman and in a [women's service] made me feel completely safe, like completely safe.” Participant 5

Sharing and withholding: a balancing act

For most participants, a complex dynamic surrounded the sharing or withholding of experiences and feelings. Some were acutely aware that sharing too much might leave them open and exposed, and potentially feeling ‘wretched’.

“But also I didn’t wanna sit and just fall apart, I didn’t wanna start crying, I didn’t wanna sit and [in-breath]…because then once that happens you’ve gone and you’re so vulnerable; it’s like you’re just open; it’s like someone’s just cracked your chest open and you’re open and vulnerable.” Participant 2

Some assessors made their intention to share control of the assessment explicit, enabling people to have some choice over the information they shared and assessment’s pace. They encouraged people to withhold and keep themselves safe, reassuring them that revealing everything was not necessary.

“[Assessor name] did explain that. You don’t have to share everything if it’s too much for you because she said about she didn’t want me to leave and be in a bad place from saying everything. So, that was reassuring.” Participant 7

Nevertheless, several participants remained uncertain about how much to reveal, leading to a complex balancing act.

“...the one thing that stopped me being really open was not really knowing what was expected of me. [...] you know, it’s a trust issue isn’t it—you have to build up the trust that they’re not gonna judge you.” Participant 3

The aftermath: exposure and hope

In the assessment’s aftermath, feelings of relief and hope were expressed, the after-effects of disclosure, and some anxiety and apprehension about the start of therapy. Some were told they had a long wait for therapy which caused anxiety about how they would manage in the interim. A few had developed strategies to cope with the effects of trauma, or had strategies recommended to them by the assessor.

Feeling deconstructed

Although some participants had been careful not to expose too much of themselves, feelings and symptoms in the assessment’s aftermath could still be challenging, like ‘someone’s deconstructing you’ (P2). One woman described the sense of something unfinished in the session and the impact of this on her journey home:

“...by the time I’ve finished I’m thinking, yes, I’m OK and then I walk out and then I get my flashbacks and whatever and to be honest when I was leaving to sit on public transport to go was the biggest fear. I wish I could fly home.” Participant 4

Finding hope

Some participants talked of feeling hopeful, either during, or because of, the assessment. They were hopeful that they would receive therapy, and that they could recover. Several people talked about the value of self-care strategies, either in the immediate aftermath of assessments or whilst waiting for therapy. Several assessors suggested strategies based on trauma-informed approaches and some participants were referred to other services for interim support.

“So I felt quite positive that I was already trying to put things in practice, so I thought I’m going to benefit from this rather than me just talking about whatever is going on in my life that distracts me from going on to try and actually deal with the actual stuff, the inner stuff.” Participant 7