Community based services for people with complex emotional needs: research program event

Prof Sonia Johnson, (Professor of Social and Community Psychiatry at UCL and Co-Director of the MHPRU) welcomed everyone to the event and introduced the research program. A commitment to improving services for people who experience complex emotional needs has been made through the NHS Long Term Plan, a five-year strategy for improving the mental health system. The work done by the research team will provide information to help make these improvements. The team includes researchers with lived experience, other university researchers, and an advisory Steering Group of senior members of the MHPRU, other clinical academics, practitioners and people with lived experience of Complex Emotional Needs, through personal experience or as a supporter.     

Sonia discussed our decision to use "complex emotional needs" as an alternative to "personality disorder".   The term “personality disorder” often comes along with an out-dated belief that recovery is not applicable to those of us who experience complex emotional needs.  Use of "PD" labels might also contribute to a lot of prejudice people experience in mental health services. We decided to use "complex emotional needs" for the purposes of this research and the team believe it helped us to engage with people who took part.  "CEN" is not intended to be a new "diagnosis" and there needs to be much more focused, co-produced work to come up with an acceptable alternative. Our overall aim for this research program was to find out what good services and practice might look like for people who experience complex emotional needs. You can watch the video of the four talk’s we write about below here

Dr Luke Sheridan-Rains (Senior Research Fellow at UCL and a researcher in the MHPRU) presented some early results of a scoping review worked on by the team. This project involved searching for published studies of therapies and services offered in the community, available to people who experience complex emotional needs. We hoped to find out what good quality services might look like, and how to include Trauma-focused care, support for social needs (like housing and finances), and support delivered and developed by people with lived experience.

The team found 240 relevant papers - a much smaller amount of evidence about available support than for many other mental health experiences. Most of the studies were about specialist psychotherapies, like dialectical behaviour therapy (DBT). These showed that people with complex emotional needs actually experience lots of improvements to their distress with specialist therapies, in spite of some ongoing stigma about recovery not being possible.

Although this project has not been completed yet, it looks like we won't be able to answer many of the research questions as there were too few studies in the areas of interest. There were also only a few studies of support for younger or older age groups, or people with additional complexities such as psychosis and substance misuse. Studies mainly included people diagnosed with "Emotionally Unstable Personality Disorder" (known as "borderline personality disorder" in the USA) and studies about support for people with other diagnoses were often lower quality.

Luke discussed how the key areas missing from the studies available make it hard to make conclusions about which approaches might work best for particular individuals. Much more co-produced work needs to be done, which centres on the views and priorities of people with lived experience, to define good services for people who experience complex emotional needs.

After the talks, Tina introduced the first Discussion Panel of the afternoon, which focussed on the implications of the research program for policy and practice. There were five panellists: Eva Broeckelmann - a member of the MHRU Lived Experience Advisory Network (LEAN) who worked on the CEN interview study, literature reviews and health economics papers, and a Lived Experience Research Assistant at King's College London; Beth McGeever - Programme Manager in the Adult Mental Health Team NHS England improvement, leading work programs within the community mental health program; Dr Ravi Rana - Director of Therapies at the East London NHS Foundation Trust (ELFT); Gabriella Clarke - a member of the MHRU LEAN who worked on the CEN interview study and Psychotherapist; and Dr Oliver Dale Co-President of the British & Irish Group for the Study of Personality Disorder (BIGSPD), Consultant Psychiatrist, Interim Clinical Lead for Community & Recovery Services, Hammersmith and Fulham, and a member of the CEN Steering Group.
Oliver highlighted the need to move away from the current focus on particular types of support and diagnoses in services. Instead, we need to move towards support that focuses on the needs of individuals, and their relationships with people working in services, which he felt was illustrated by the interview-based work of the research program.
Eva stressed the need for services to treat people experiencing complex emotional needs as individuals. Nearly all the participants in the research she had interviewed had experienced stigma in mental health services. To tackle this prejudice, co-production should be "embedded at all stages from design to delivery" in services. Eva also urged services to use existing evidence about the support that people with complex emotional needs want, to help decide what they offer, rather than introducing new approaches without a solid evidence base to support them.
Beth described how the research will help push forward the NHS Long Term Plan for improving adult community services for people who experience complex emotional needs. A clear message from the research was that people with complex emotional needs want personalised, flexible, long-term support, based on positive, collaborative, relationships developed with practitioners and that these findings match the goals of the Long Term Plan.
Ravi stressed that most people who experience complex emotional needs are not using specialist services and often rely on their GP for support. She felt that a strength of the research was its aim to find good community support in all forms, and discussed the National Community Mental Health Transformation Programme for which.  ELFT is one of 12 Early Implementer sites.  The Programme brings together support from GPs, mental health services, social care and the voluntary, community and social enterprise sector, so people can be fully supported locally.
There was then time for some questions. First, the panel was asked about how to provide good quality, holistic support to people who are not using specialist services. The main points discussed were:

• There is a need to integrate all services providing support for complex emotional needs.
• Ravi emphasized that measures of the positive or negative impact of support from services should be used across both specialist and non-specialist services, in order to be comparable.
• Oliver echoed the position of the Royal College of Psychiatrist's, suggesting that as many people as possible should have access to high quality therapies and that the role of specialist services was to work with local services, to ensure that holistic needs are met.

Other questions included how to support parents who experience complex emotional needs. Gabriella stressed the need to make support more accessible, for example, by offering services out of working hours and at weekends. Other suggestions included a role for maternal mental health services.
The final question for the panel was how to avoid tokenistic co-production.  The main points discussed were:

• It is essential to include people with complex emotional needs in services as practitioners, employed on equal terms to other NHS employees and across all levels of seniority.
• Gabriella raised that people who use services should be recruited rather than sporadically consulted about service development and that their input should be extensive.
• Oliver stressed that lived experience practitioners should be treated as colleagues and Eva emphasized the need for true equality in working relationships, rather than tokenistic adding of peer roles to services, where their views, voices and opinions aren't taken into account or given equal weight in decision making processes.

The second panel offered reflections on the MHPRU CEN studies and the implications for future research.
Dr Gary Lamph (Senior Research Fellow, University of Central Lancashire) said there is a real need to join up primary and secondary care services. Many people with complex emotional needs can’t access specialist services because they are ‘too risky’ or ‘too complex’ or because of waiting lists. Gary would like to see early interventions for people with diagnostic uncertainty.

Dr Kirsten Barnicot (Lecturer, City University of London) made four points:

• There needs to be more research about how to help the substantial minority of people (20-25%) who cannot engage with DBT and MBT and discontinue prematurely. A recent study in London showed that the outcomes for these people are worse than for people who didn’t receive these therapies.
• Most people who complete 12-18 months of DBT or MBT do not feel they have ‘recovered’ and shouldn’t be discharged from services. We should expect that they will need more support to manage ongoing difficulties.
• There is a lack of evidence for whole service models of care outside specialist psychotherapies. We need people who will champion other models of community care and do high quality research on them.
• The need for identification of and support for PTSD among people with CEN. Kirsten referred to developments in Germany and the US where trauma-focused therapy for PSTD has been combined with evidence-based psychotherapies like DBT. There are some small pilots here and it should be given more consideration in future research.

Tamar Jeynes (Pink Sky Thinking, Service User Research Consultant and member of the Complex Emotional Needs Research Programme Steering Group who worked on the CEN interview study) explained that people with lived experience weren’t party to setting the research questions the MHPRU has been working on in the CEN programme. The questions were set by the Department of Health and Social Care. Tamar also explained that, although service users were involved in the analysis of literature for the CEN programme, there is only so much they could do when the evidence base contains very little about service-user led interventions. Lived-experience researchers were involved in the development of topic guides for the interview studies and were part of the interview studies research team but not on an equal basis with the researchers employed by the MHPRU. Tamar recommended more funding for service-user led interventions, and for their evaluation, so they can become part of the evidence base for future research.

Prof Paul Moran (Professor of Psychiatry, University of Bristol) welcomes any initiative that reconnects people with a kinder more compassionate approach and better co-design. Paul made three points:

• There is a pressing gap in primary care where the main platform for psychological therapies is IAPT. Research at Bristol and at King’s shows that long-standing relational/personality difficulties are significantly linked to poorer outcomes from IAPT.
• Trauma blights the lives of perhaps 20% of the English population: one in five adults experienced one form of childhood abuse. However, Paul is wary of care being packaged as a trauma pathway. An HTA review from last year shows that evidence-based trauma treatment helps people with complex trauma, including childhood trauma, but others may benefit from support for emotional skills, relational skills, and mentalization skills.
• Paul is also concerned that the term CEN says something about everything and nothing. We need better longitudinal research to validate the term CEN.

Sonia Johnson offered the panel a question from the chat: What do they think of early intervention models for young people?
Gary referred to Professor Andrew Chanen’s Project Air in Australia and suggested it could be piloted here. Tamar mentioned Forward Thinking Birmingham and how BIGSPD is seeking representation from young people. Paul added that in Australia they have a Youth Mental Health service which is a more sensible approach than the distinction we have here between CAMHS and Adult Mental Health.

After the panel discussions, attendees broke into smaller groups to discuss their priorities for either future research or policy and practice. These are the main priority areas for policy and practice suggested by each group:
Five groups noted the need to take a whole "systems approach", increasing collaboration between all services providing support to people who experience complex emotional needs. Many described  that this would necessitate developing clear, easy to access pathways to provide, long-term, holistic support: irrespective of being provided by specialist or general services. Specific suggestions included:

• Having a clear point of access in primary care without high thresholds for entry that mean people can't get help until things are really bad.
• Using psychosis pathways as models (that provide services tailored to the amount of support needed and the length of time a person has experienced psychosis) and creating standard pathways across the country.
• Continuity of care: managing transitions between primary, secondary and tertiary services (which offer increasing amounts of support, respectively).  Flexible, available services need to be developed and there needs to be support for service users in-between.
• There is a need for early intervention but also long-term support.
• Reinforce services that are working well whether primary or secondary (rather thancompete for funds).
• There needs to be more collaboration with social services and the voluntary, community and social enterprise sector to help fill gaps in care. The new Community Mental Health Framework Transformation Programme provides opportunities to embrace the research findings and recommendations.
• There is a need for collaboration across different disciplines to help move care forward in a positive way, which acknowledges differences of opinions and works with these to build good models of care. Structures and time are needed to share expertise across services.

A number of groups echoed both the panellists and the research findings, to stress the need for a shift in focus to relational practice, which should be "promoted across service boundaries".  A relational-approach was defined as being based on 1) Understanding (of the person and of complex emotional needs, to help with working in a non-stigmatising way) 2) Connection with the person and 3) providing consistency and continuity of support.  One suggestion to enable this type of working was to use an approach where workers who act as the first point of support stay with the person throughout their "care journey".  
Other groups emphasised the need to move away from the current focus on "three letter acronym therapies" such as DBT and from medical thinking which focuses on "symptoms". Two groups stressed that the current NHS framework is not working and that existing systems can be punitive and damage, rather than support, relationships.
A common priority for the groups was the need to increase the "choice and variety" of support options and therapies: "to recognise that one size does not fit all and offer range and flexibility".  The need for an increased focus on true co-production as new services develop was also stressed.  There were a number of groups that emphasised the need to increase peer support within services: this included developing peer-led services and increasing peer involvement to assist with the process of breaking down barriers and "moving away from 'us and them'". It was stressed that peer support roles should be paid, and that supervision should be offered. One person suggested working towards a professional framework for lived-experience practitioners but recognised that this would be controversial.
The need for staff training and work force adaptations was also frequently stressed in order to realise many of the recommendations we heard about today.  Specific suggestions included:

• Staff training to deliver relational services and to develop skills in a range of therapeutic approaches
• Training for systems leaders: to investigate how we can ensure leadership that champions change and makes things happen.
• The need to address wider problems of staff shortages and too many clients allocated to individual staff members.
• The centrality of kind and positive staff attitudes and the urgent need to tackle prejudice against people who experience complex emotional needs within the mental health service.

A number of groups also stressed the need to increase our focus and understanding of the needs of groups of people with additional complexities to complex emotional needs.  These groups included people who experience autism, ADHD, complex PTSD, people with "lower" levels of difficulty who might do well in primary care alone and people with more "severe" experiences of distress. One group also emphasised the importance of increasing our understanding about the needs of people with different complex emotional needs-related labels, such as people with "anti-social" or "schizotypal" diagnoses, as they are not well understood in research or in practice.
Finally, there were some additional priorities from individual groups for further food for thought:

• Increasing the focus on personality strengths when providing support.
• The need for further investigation into Trauma-informed care to reach a consensus on how it is defined, how it differs from trauma-focused care and its benefits.
• How best to support people with reintegration into the community after experiencing inpatient services.
• Communicating effectively with parents and carers.
• Increasing focus on physical health in addition to mental health support.
• Developing self-help interventions.

Seven breakout groups listed their suggestions for future research priorities. Most suggestions again related to systems:

• the wider systemic challenges such as austerity and an institutional focus,
• map how different Trusts are using funding for CEN.
• community alternatives to inpatient care that can tolerate a level of risk.
• the benefits of working across disciplines.
• how can we close the gap between services?
• how can we ensure continuity of care across services?
• how services could share a ‘no wrong door’ commitment to people with CEN.
• support for people's wider needs (i.e. finances/housing etc.) as essential prerequisites of compassionate care.
• support for people following therapy.

As with priorities for policy and practice above, other suggestions were around relational care, relational training for staff, and the role of relational practice (distinguishing between service and intervention, and between “care” and intervention).
Four groups suggested research around early intervention for young people who experienced trauma and might be diagnosed with a ‘personality disorder’. This included research on children and young people’s priorities for support, and what preventative training (e.g. relational patterns) is effective for young people at risk of developing complex emotional needs.
There were suggestions around classification, terminology and language: creating a more acceptable, epidemiologically sound classification system; investigating whether changing the terminology would result in a change in service culture; and developing a common language and understanding between service-users and health professionals about experiences associated with complex emotional needs.
There were several other interesting suggestions:

• service users’ priorities for treatment outcomes.
• practice-based evidence in the absence of evidence-based service models.
• how to support people who struggle to engage with evidence-based interventions.
• benefits of co-production between staff and people with CEN.
• clinicians’ attitudes to CEN, reasons for stigmatising attitudes, and how it can be reduced.
• how can practitioners avoid emotional burnout and balance their emotional needs with those of their clients?
• support for people with multiple needs e.g. who experience psychosis, substance misuse/ other forms of mental distress in addition to complex emotional needs.
• sensory processing needs of people with complex emotional needs.
• a strengths-based model to acknowledge the protective effect of negative experiences: what people can do (rather than what they can’t).
• research on appropriate care for people with complex emotional needs and autism symptoms.

MHPRU is developing a research proposal about services for adults with autism and lived experience of mental distress.