[Project status – In dissemination]
We have carried out a substantial programme of research on the needs of people with “complex emotional needs”, who may have received a “personality disorder” diagnosis. This research was initiated to inform policy commitments in the 2018 NHS Long Term Plan.
We adopted the term “complex emotional needs” because of concerns regarding the stigma associated with “personality disorder” diagnosis, and the imprecision of such diagnoses. This followed discussions at an initial workshop, and with experts by experience and profession. We have continued to use it, as increasingly NHS services do, as a way of referring to the broad group of service users who may have received a “personality disorder diagnosis” when using mental health services, or have comparable needs. However, we do not see this as definitively the best choice of terminology, and would very much welcome more work on best ways of assessing and describing needs in this area.
We worked with a group of academic experts, clinicians, and lived experience researchers on this programme, publishing a group of reviews and qualitative studies, as listed below. Some key findings include:
- Service users and clinicians concur on the need for services that prioritise therapeutic relationships, continuity of care, kindness and compassion, and a holistic focus on social and clinical needs. As well as continuity of care, stigmatising views and pessimistic views among health professionals, especially in primary and generic secondary services, are often an impediment to good quality care.
- Therapeutic pessimism is hard to justify, as many participants in studies of “personality disorder” treatments improve substantially with any specialist treatment, or even with none, often to the extent that they no longer meet “personality disorder” criteria.
- The evidence base on effective and cost-effective services is mainly limited to specialist psychotherapies: most of these are similarly effective, with a lack of evidence on which work better for whom. Research lags behind other areas of mental health care, with a lack of evidence in areas including treatments for people with comorbidities, or younger and older people, trauma-focused and trauma-informed approaches, support for parents, socially-focused and co-produced interventions, and service design.
This overview presentation gives a summary of the CEN programme.
The Centre for Mental Health summarised our work and drew out conclusions for policy and service delivery in their report 'Dismissed because of my Diagnosis'
Engagement and events:
- The MHPRU held a Community ‘Personality Disorder’ Services Research Workshop on the 22nd of January 2019 to inform the project and review typologies of community ‘personality disorder’ services
- Centre for Mental Health Briefing of our work and policy recommendations for this area: "Too many people with complex emotional needs face stigma, fragmented services and poor support"
- Mental Health Question Time: Ending exclusion - Research and care for people with complex emotional needs. This influential panel discussion included researchers, clinicians and experts through experiential knowledge to explore what should change in support for people with CEN.
- Presentation on Community-based services for people with complex emotional needs
- Briefing about the findings of the qualitative service user interview study
- Breifing by the Centre for Mental Health - 'Dismissed on the basis of my diagnosis'
A Mental Elf blog covering our co-produced interview study on needs and experiences of community mental health care of people with complex emotional needs
Another Mental Elf blog has reported on our scoping review of all the published quantitative evidence on community treatment for people with complex emotional needs
Presentation for a systematic review on treatments for complex emotional needs
This blog summarised an event held by the PRU to disseminate their complex emotional needs programme to policy makers and others in April 2021, including links to key contributions to the event.
- A review of qualitative studies on service users’ experiences of community services titled 'Service user experiences of community services for complex emotional needs: a qualitative meta-synthesis'
- A review of the economic evidence on community interventions for people with complex emotional needs titled 'Community interventions for people with complex emotional needs that meet the criteria for “personality disorder” diagnoses: a systematic review of economic evaluations'
- A review of qualitative studies on clinicians’ perspectives about what good care for people with complex emotional needs looks like titled 'Clinician perspectives on what constitutes good practice in community services for people with complex emotional needs: a qualitative thematic meta-synthesis'
- A major co-produced interview study of service users views about what they need from mental health services and the gap between this and current experiences. Researchers with relevant personal experience carried out the interviews and participated in analysing them. Service user perspectives of community mental health services for people with complex emotional needs: a co-produced qualitative interview study. 'Service user perspectives of community mental health services for people with complex emotional needs: a co-produced qualitative interview study '
- A qualitative study of clinicians views about current treatments and care for people with complex emotional needs and how this could be improved. 'Clinician perspectives on community services for complex emotional needs: a qualitative interview study'
- 'Current state of the evidence on community treatments for people with complex emotional needs: a scoping review
- This synthesis of qualitative studies on crisis care experiences among people with complex emotional needs was led by two UCL post-graduate students to address an evidence gap identified in our complex emotional needs programme. One of the students, Dr Lucy Maconick, has now received NIHR funding for a PhD on crisis care for people with complex emotional needs, supervised by Sonia Johnson.
- Effectiveness of outpatient and community treatments for people with a diagnosis of ‘personality disorder’: systematic review and meta-analysis - This paper by led by Panos Katakis, a post-graduate student, extends our work on effectiveness of interventions with a meta-analysis on effects on symptoms of interventions for complex emotional needs.
- Evaluation of international guidance for the community treatment of 'personality disorders': A systematic review - Nicholas Wong Zhan Yuen, another UCL post-graduate student, has also extended MHPRU work in this area with this review of international guidance on treatment and care for people with a "personality disorder" diagnosis.
Mental health service use and costs associated with complex emotional needs and a diagnosis of personality disorder: analysis of routine data - This paper aimed to estimate the costs of care for people with a personality disorder diagnosis, compare service use and costs for those receiving specialist input, and those receiving generic care.