Transforming Care and Outcomes in Borderline Personality Disorder

orderline personality disorder (BPD) is a complex, common and disabling mental health condition. BPD problems include difficulties in relationships and feelings of emptiness, managing emotions (which can often be intense and overwhelming and triggered by fear of abandonment) and impulsiveness, especially self-harm and suicidal feelings. Sadly, around 10% of people who are diagnosed with BPD die by suicide, making it a life-threatening condition. Many people, including some professionals, don't believe that BPD should be used as a diagnosis, partly because BPD symptoms often overlap with other mental health conditions. What is agreed is that people with BPD problems experience stigma, and perhaps to a greater extent than people with other mental health conditions. People with BPD often find themselves accused of attention-seeking and this is sometimes used as a reason to exclude them from services. BPD runs in families, and it is most common in people who have experienced trauma, especially when at a young age. It is thought that trauma early in life affects brain development and especially the response to stress. We don't know enough about how to help with people who experience these problems. Psychological treatments help but are hard to access, and although over 90% of people diagnosed with BPD are prescribed psychiatric drugs there is no scientific evidence that these actually do much good. The voices of people with lived experience of BPD problems are rarely heard in the scientific literature and this needs to change. We don't yet know if removing BPD from the list of mental health diagnoses would be a good thing but we are sure that understanding will only improve by working with people who have experienced these problems. We are planning a programme of research (called a mental health platform hub) over 5 years to transform care experiences and outcomes for people who experience BPD problems. We believe that the key lies in understanding how experiences in peoples' everyday lives trigger intense emotions or feelings, or cause people to harm themselves, for example. We will invite people with BPD problems to become part of a group of people who will help us select and answer the most important questions. We'll include people who might not identify as having BPD as a diagnosis and will offer payment (vouchers) for completing questionnaires and interviews and for taking part in different studies. One of these will use a method called ecological momentary analysis (EMA) and involves wearing a smartwatch and answering short questions when prompted by a smartphone app a few times a day, for 3 weeks. We will also look at the data in anonymous electronic health records, using artificial intelligence, to see if we can predict which particular BPD problems lead to persistent or worse problems over time, to help find more precise ways of helping more who experience these. We will find ways to make sure that being part of this research feels worthwhile, so that people will want to continue. There will be opportunities to help with the research in other ways, including being part of workshops to develop more personalised ways of helping people with BPD to manage their feelings and emotions, and to develop ways to support professionals. Together with the people who take part, we will share our findings to raise awareness of BPD.