The study, published in BMC Psychiatry by the NIHR Mental Health Policy Research Unit team at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London and University College London, was jointly produced by academic and clinical researchers, and people who have their own lived experiences of Complex Emotional Needs (CEN).
CEN is an umbrella term used by the study authors and refers to people who have received a diagnosis of a ‘personality disorder’ or have used services designed for people with this diagnosis. The ‘personality disorder’ diagnosis is often criticised for being stigmatising, and some report it gives a sense of hopelessness about the effectiveness of future treatment. As a consequence, many people given that ‘label’ feel frustrated and further marginalised by their experiences of mental health services.
The researchers interviewed 30 people from across England living with CEN, investigating their experiences of using community mental health services, and their thoughts on how these services could better help those in need.
While there was some evidence of positive experiences, especially in specialist services for this group, respondents reported many negative experiences of care. Some found that they were met with stigmatising attitudes from staff, while others reported that staff lacked knowledge and understanding about the nature of the condition, preventing them from providing good care. Other respondents simply felt that they weren’t listened to, that previous traumatic experiences were not recognised, and that the treatments and techniques suggested to them were designed for people with less complex needs. Specialist services for people with a ‘personality disorder’ diagnosis are seen as of good quality by some service users. However, they also tend to be hard to access and strictly time-limited. The people with the most severe difficulties often found it hard to stick to the rules of these specialist services.
Overall, the feedback provided by respondents was divided into four areas that they felt could be improved upon: staff understanding, interpersonal connection, consistency and continuity in care, and adaptability and accessibility in care.
Study participants shared a desire to see staff treat them in a non-stigmatising and compassionate way that recognised their individuality. The researchers suggest that ‘relational practice’, which focuses on establishing and maintaining longer-term therapeutic relationships that look at the individual’s wider social needs alongside their health and psychological needs would improve the support for service users within the community and reduce the demands on other parts of the healthcare service.
“While there were pockets of good experiences reported, our study shows that people living with CEN feel that community services are not often providing the kind of care that people need. CEN relates to more than a single experience or factor, and good care needs to reflect this. Relational practice looks at the whole person, sees the interconnectedness of their experiences, and seeks to work with the service user to help them manage their lives.”– Dr Kylee Trevillion, the study's first author from King's IoPPN
Dawn Allen, Founder of Making Mental Health Positive and one of the paper’s authors with relevant lived experience, said, “'It is important for health professionals to include, with the consent of the patient, the family members when supporting and working with someone with complex emotional needs. Relatives are an important part of the process to help the person live a more fulfilling life and encourage the carer to understand the challenges they will face.”
Shirley McNicholas, Women’s Lead for Camden and Islington Foundation NHS Trust and the founder of Drayton Park Women’s Crisis House and Resource Centre said, “Throughout the process of conducting this research, collaboration with people who have lived experience of using services was fundamental, ensuring that their voice had a central role. This is an essential principle in trauma-informed approaches which were referred to throughout the research; to be trauma informed we must acknowledge and validate the experiences people have had that bring them to services and adapt our ways of thinking and behaving to demonstrate our understanding of these experiences and the way they can shape a person’s whole being.”
Dr Oliver Dale, Consultant Psychiatrist and Co-President of the British and Irish Group for the study of Personality Disorder said, “If there is one message that leaders in health and social care take from this study, it is the importance of ensuring people with CEN have the opportunity for long term therapeutic relationships. The work of the NIHR Mental Health Policy Research Unit demonstrates that whilst such relationships are not easy, the experience of specialist services is that appropriately supported clinicians can provide the continuity of care necessary to provide meaningful help.”
Service user perspectives of community mental health services for people with complex emotional needs: a co-produced qualitative interview study (doi.org/10.1186/s12888-021-03605-4) (Kylee Trevillion, Ruth Stuart, Josephine Ocloo, Eva Broeckelmann, Stephen Jeffreys, Tamar Jeynes, Dawn Allen, Jessica Russell, Jo Billings, Mike J. Crawford, Oliver Dale, Rex Haigh, Paul Moran, Shirley McNicholas, Vicky Nicholls, Una Foye, Alan Simpson, Brynmor Lloyd-Evans, Sonia Johnson & Sian Oram) was published in BMC Psychiatry.
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