Award Title: Crisis care for people with a diagnosis of ‘personality disorder’: a mixed methods study of outcomes and experiences
Funder: Department of Health and Social Care

Abstract: Background: One in 20 people in the UK meet the criteria for a diagnosis of 'personality disorder' or the alternative term Complex Emotional Needs (CEN). People with CEN need good quality care when experiencing a crisis, to relieve suffering, prevent suicide and self-harm. However previous research and feedback from service users suggests current mental health crisis care is not appropriate for this group. There is little research on which to base practice. This is an important gap that has been highlighted by bodies such as NICE and the Royal College of Psychiatrists. Aim:To understand the outcomes and experiences of current models of crisis care for people with a diagnosis of 'personality disorder' or CEN. The aim of the study is to understand the impact on service users using a mixed methods approach. Objectives:1. To review existing literature to establish what is known about outcomes from crisis care for people with a 'personality disorder' diagnosis	Investigate and compare outcomes of the three core types of crisis service offered by the NHS for people with a diagnosis of 'personality disorder' 	Explore the experiences of people with CEN who have used crisis care, the experiences of clinicians delivering care and their views about how services can be improvedMethods:The quantitative and qualitative phases will be conducted using a sequential explanatory design.	I will conduct a systematic review of studies reporting outcomes of different types of crisis care for people with a 'personality disorder' diagnosis 	I will conduct an observational cohort study of anonymised longitudinal electronic health records comparing outcomes for people with a 'personality disorder' diagnosis using the three core models of NHS crisis care. Using survival analysis I will examine associations between the model of crisis care accessed and the time to next crisis. I will also look at associations with self-harm, suicide, and a measure of health and social function. Models will be adjusted to account for differences in individuals referred to each type of service. 	I will conduct a qualitative study interviewing people with CEN who have used crisis services and convene focus groups of crisis service staff. This will include some people from 'trauma informed' services. I will explore their experiences of crisis care and their views on how care could be improved.Timeline for delivery:0-8 months- perform systematic review and apply to ethics board 6-18 months- observational cohort study 16- 28 months- qualitative study 26-36 months- write up thesis, submit and disseminate Anticipated impact and dissemination:This would be the first piece of research to identify and compare outcomes and experiences of contemporary NHS crisis care specifically for people with CEN. It is thought that crisis care for people with CEN is often inadequate and costly, in part because it fails to meet their needs. This study will provide an evidence base to understand the impact of care that is being delivered in the NHS, to inform further research, commissioning of services, clinical decision making and to initiate service improvement.

Lay Abstract: Background: One in 20 people in the UK meet the criteria of a 'personality disorder' diagnosis. A person may meet this criteria because of difficulties in the way they relate to themselves and others and with management of emotions. This might be because of trauma or adversity the person experienced in early life. The label can be stigmatising, and some service user groups prefer the term 'Complex Emotional Needs' (CEN) which I will use. People with CEN can experience a crisis in response to overwhelming emotions that can trigger self-harm and suicidal thoughts. In England there are crisis services available, including crisis teams that visit the person at home, crisis houses or admission to hospital. Help in a crisis is very important to reduce suffering and prevent people with CEN harming themselves. However, NHS crisis services were not designed to be tailored to the needs of people with CEN and some service users and clinicians think the crisis care they receive is inadequate. People with CEN have been severely neglected by mental health research. What research we have focuses on longer term therapies. There are very few studies that help us understand what is helpful in a crisis. Concerningly, research in the United States has found that some types of crisis care might be harmful for people with CEN. Given that the NHS provides crisis care to large numbers of people with CEN, we urgently need to understand this better. Aim: This study aims to understand how best to provide care to people with a CEN experiencing a mental health crisis, so that services can be improved to better meet their needs. The study will have three parts: 1) I will review past research to find out what crisis interventions are available and helpful for people with a 'personality disorder' diagnosis 2) I will use anonymous electronic health records of people with a diagnosis of 'personality disorder' in two areas of England to see if the type of crisis service the person uses makes a difference to (a) how long they stay well following a crisis, (b) whether they harm themselves, and (c) how well they can function. This will tell us about the crisis care we provide in the NHS and what impact it has on people with CEN. 3) I will interview people with CEN who have used different crisis services about their experiences and hear their views on how services could be improved. I will hold focus groups of crisis service staff, because the relationship between staff and patient is important in a crisis. A small number of services now offer 'trauma informed care', which recognises that some service users are survivors of trauma. I will recruit some people who have used these services, to think about how these ideas could improve crisis services more widely. I have worked with people with CEN, doctors, nurses and policy makers to design this study. A researcher with CEN will be involved throughout the project. A working group of service users will help decide how the research is run and how to understand the findings. Outcome: This will be the first study to focus on the impact of NHS crisis services on people with CEN. This information is urgently needed so that services can be improved in the NHS and internationally. When the study is finished, I will publish the findings in journals. I will also send out summaries, write blogs and hold an online event for patient groups, NHS England policy makers and crisis care managers to make sure my findings reach people who can improve services.

Research Activity Codes: 8.1 ORGANISATION AND DELIVERY OF SERVICES
Health Categories: MENTAL HEALTH