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

Blog post by Natasha Lyons and Ruth Stuart

The NIHR Mental Health Policy Research Unit (MHPRU) held an online event on 30th April 2021 about our research into services for people with Complex Emotional Needs (CEN) that offer support in the community. The term "CEN" was used as a potentially less stigmatising and more inclusive alternative to the label of "personality disorder" throughout the work presented. Three hundred and twenty-four people attended the event from a large range of backgrounds including people with lived experience, their relatives, academic researchers, commissioners and practitioners.

At the start of our CEN research programme, in January 2019, Tina Coldham joined us in Denmark Hill, London, to chair our launch event, a workshop. We were delighted that Tina agreed to chair our concluding event also, this time remotely from Hampshire. Tina is a mental health service user consultant, a Patient and Public Involvement Advisor to the NIHR, and a researcher currently involved in the University of Birmingham Avoidable Harm in Mental Health Social Care study.

Defining good services for people experiencing CEN: 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

Current Services available

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.

Lived experience perspectives

Dr Kylee Trevillion (Lecturer at King’s College London and MHPRU Researcher) presented two studies because there was considerable consistency in the findings.

A qualitative study which interviewed 30 people with CEN about their experiences of seeking or receiving community mental health services and their views on what would be helpful. Almost all the interviews were conducted by researchers with lived experience, and they led the main analyses. The team sought participants with diverse identities and ethnic backgrounds, from a range of ages and English regions, and with a mix of specialist and non-specialist mental health service use.
A systematic review and meta-synthesis of qualitative papers published since 2003 about service users’ experiences of community mental health care for people with CEN. Forty-seven papers were included: 28 set in the UK, 8 in Europe, 5 in Australia, 3 in the USA, and one each in Canada, China and New Zealand.

The key themes from both studies are:

The need for a long-term perspective
Need for holistic and individualised care
Importance of therapeutic relationships
Stigma of the ‘personality disorder’ diagnosis
Variations in accessibility and quality of community services

The full set of slides for the day are available here:

slides.pdf

See slides 14-17 for more on the themes above. The slides include a conceptual map that Kylee created by categorising the key themes from the interviews.

There is a pressing need to develop new service models and care pathways, based on the priorities of people who experience CEN, to provide long-term support which is responsive to the individual needs of people throughout their recovery journey. It is important that services work with one another and with people who experience CEN to provide integrated, consistent and holistic care, which also recognises that mental health cannot be separated from other fundamental needs such as secure housing.

There is also an urgent need to address stigmatising attitudes of staff towards people with a ‘personality disorder’ diagnosis, through positive, respectful practice, co-produced training, and clinical supervision embedded within generic services. There should be an increased role for peer support.

For detailed descriptions of the themes and excellent quotes from our impressive interviewees please the refer to the interview study paper: Service user perspectives of community mental health services for people with complex emotional needs: a co-produced qualitative interview study. The pre-print (not yet peer reviewed), is here

Luke Sheridan Rains and others wrote up the systematic review of service user experiences. The published paper can be read here

Staff perspectives

Dr Una Foye (Research Associate at King’s College London and MHPRU Researcher) presented two studies because the findings overlapped:

A systematic review and meta-synthesis of papers published since 2003 about clinical perspectives on community services for people with CEN. Twenty-nine papers were included: half from the UK, the others from Australia, Europe and the USA.
A qualitative study about the views of staff working with people with CEN in community settings in England. The data were collected through focus groups and 1:1 interviews. There were 50 participants in total: 32 worked in the NHS, 13 in the voluntary sector, and 5 in local authority social care. Twenty-one worked in specialist CEN or ‘personality disorder’ services.

See slides 18-24. Slides are available here:

slides.pdf

The findings of the meta-synthesis were written up by Jordan Troup and others and can be read in full in preprint (not yet peer reviewed), here

Una has written up the qualitative study and the paper, not yet peer reviewed, can be read in full in preprint here

Cost-effectiveness of services

Professor Paul McCrone (Professor of Healthcare Economics, University of Greenwich, and lead researcher for Health Economics in the MHPRU) presented the results of a three-part research program to assess the cost-effectiveness of support available to people who experience complex emotional needs.

The first project was a systematic review of "cost evaluations" of community support for people who experience complex emotional needs. This involved searching for studies of support offered in the community that included an assessment of how financial costs relate to benefits for health and well-being.

The team found 18 relevant studies, about a range of different support approaches. No individual types of support were found to be more cost-effective than the others. DBT was likely to be cost-effective compared to standard support offered by services and had the most evidence to support this. You can read about other potentially cost-effective approaches and a full description of each type of support in the full, pre-print (not yet peer-reviewed) version of the paper written by Joe Botham and others, available here

Next, Paul presented some early findings of an analysis of electronic health care records of people using mental health services offered by the South London and the Maudsley (SLAM) NHS trust in South East London. These were anonymous so the team didn't know who the records belonged to. We calculated the cost-effectiveness of support by considering costs and how helpful the services were for people using them, by looking at their use of other services after receiving a complex emotional needs-related diagnosis, such as hospital or drug and alcohol services.

We found that the costs of using specialist and non-specialist services were very similar. There were some factors that predicted differences in cost of each person's use of services, like having other diagnoses recorded or more contact with specialist services. A full list of these cost-predicting factors can be found on p30 of the slides, available here:

slides.pdf

Finally, Paul presented a model to assess the cost-effectiveness of services available to people experiencing complex emotional needs, using DBT as an example. In the model presented, as the number of people using DBT increased, overall costs also went up but the number of hospital admissions went down. This is displayed visually on page 33 of the slides.

Paul concluded that overall, the studies available do not provide a clear enough picture about the cost-effectiveness of support for complex emnotional needs to make recommendations to help services decide what kind of support to offer in future. It was also noted that none of the forms of support presented were co-produced with people who experience complex emotional needs or targeted people working in services. However, the work shows that DBT is likely to be cost-effective and there’s very little difference in costs of using specialist or non-specialist services.

Panel one: Implications for policy and practice

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.

Panel two: Implications for research

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.

Small group discussion 1: Priorities for policy and practice

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.

Small group discussion 2: Prioritities for research

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.

Final Thoughts

Sadly, a common theme throughout the day was the ongoing prejudice experienced by people when accessing support for complex emotional needs. This must be addressed for the positive changes discussed today to make a real difference. From all the work presented, it's clear that support for people who experience complex emotional needs is hugely under-researched. Much more work is needed to define good practice in services for people who experience complex emotional needs. Today's discussions suggest that many people who experience complex emotional needs want support that meets their everyday needs, as well as good therapies. This should be long-term, easy to access and able to adapt to meet their needs and preferences, as these might change over time. There is an urgent need for much more co-produced and user-led research to find out how this can be achieved by services.
There wasn’t time in the presentations to cover the issue of diagnostic stereotyping and whether complex emotional needs services are made available to people from all ethnic backgrounds. These issues were discussed a few days later (on 6 May 2021) by Tamar Jeynes, Shirley McNicholas, Sharon Prince, Kylee Trevillion and Sanisha Wynter who were among the panelists at the Complex Emotional Needs Mental Health Question Time. That discussion can be viewed here

You can get in contact with us by email: dop.pru@ucl.ac.uk or via Twitter: @MentalHealthPRU

Disclaimer

This blog reports an event organised by the NIHR Mental Health Policy Research Unit, which is funded by the National Institute for Health Research Policy Research Programme. The views expressed here are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research, the Department of Health and Social Care or its arm's length bodies, and other Government Departments.