Table 5.

Lived experience commentary written by Sarah Labovitch and Jennie Parker

In light of the Community Mental Health Framework (CMHFA), this review is well timed to revise thinking around what should be available to people who may meet the diagnostic criteria for “personality disorder”/CEN. It may also prompt researchers and service-providers to consider what is important to us—it was disappointing to see that only 44/226 studies reported on quality of life, whilst most primary outcomes focused on diagnostic-related criteria

Time to follow-up in many studies discussed is limited. Side-effects of funding constraints typically lead to quantitative research and RCTs being prioritised. We agree with the question of what underlies reported improvements, and would say this is not just in relation to observational studies. It would be interesting to delve further into this

Despite advancements in recent years, community service-provision for “personality disorder”/CEN is nevertheless lagging behind other areas of mental health. Treatment in the community must be patient-centred: adapted to factors such as age, culture, comorbidity, substance misuse and trauma. Some health professionals still display discriminatory attitudes towards CEN, or simply don’t know how to help. Finding a clinician with the right skills and compassion is depressingly arduous. Further, exclusion criteria and high thresholds can make “specialist” services inaccessible. Meanwhile, the notion of individuals actually having a choice in therapist is vanishingly slim, adding to the risk of iatrogenic harm and a “cliff-edge” of care. Services need to commit to consistent long-term contact, as well as tailoring treatment to individual needs

As with others, we have experienced stigma, rejection, and repeated/inappropriate referrals. This paper leaves us with a conundrum, both in relation to the integrated approach proposed by the

CMHFA and access to good and timely support. Whilst this is a scoping review of quantitative research, our recommendation is for further investigation into the active ingredients of therapy: what makes good outcomes for some but not others, the importance of the relationship, and whether we have a choice of therapist (considerate of age, culture, gender, etc.) or of intervention. We also noted the limited research on peer support, compared to our experience of its value. With such a diverse population and diverse range of therapies (and variance within specific models), clearer guidance would be helpful so that we can all make fully-informed choices