Symposium: Embedding lived experience of personality disorder among young people into clinical services
Chair: Andrew Chanen
Co-chair: Jane Cannon
Aims: Early intervention for PD has been demonstrated to be safe and effective in reducing psychopathology and improving functioning among young people with personality disorder (PD). Early intervention should routinely include the perspectives and expertise of those with lived experience.
Methods: The lived experience of diagnosis and treatment for PD will be shared, from the perspectives of a young person and a family member. This will include descriptions of both supportive, and unhelpful, responses from clinical services and recommendations for change. A youth peer worker and a family lived experience worker will detail their experience delivering peer support, describing their roles at headspace and Orygen, in Melbourne, Australia. They will share insights into the ‘do’s and don’ts’ of implementing peer support at youth mental health services.
Results: Young people with PD and their families deserve accurate and timely diagnosis, and access to appropriate, evidence-based, treatment and supports. Young people and their families will likely benefit when early intervention includes youth peer work and family lived experience work.
Conclusions: The perspectives and expertise of those with lived experience must be embedded within clinical services. Such integration will likely improve the quality of care and enhance treatment outcomes.
A parent’s view of borderline personality disorder identification and management before the age of 18
Jane Cannon
BPD in youth mental health services seems to be the “Voldemort Diagnosis” – it must not be named! We believe this is tragically misguided.
Failure to identify BPD symptoms in young people means youth mental health services are not investing in the treatments needed by these young people – often leading to the kind of long inpatient stays that NICE (The United Kingdom’s National Institute for Health and Care Excellence) Guidelines warn against and to further deterioration.
Failure to inform patients and carers of the potential for this diagnosis disempowers them.
Everyone has a right to research and understand their own condition. The absence of honest, accurate diagnoses leaves young people feeling “mad and bad” and losing trust in professionals’ ability to help them.
Jane will tell the story of her daughters’ journey through CAMHS (Child and Adolescent Mental Health Services) and illustrate the dangers of delaying and avoiding the diagnosis of BPD.
Jane will also illustrate why the move to frame mental distress through a trauma lens was unhelpful for her daughters: “What happened to you?” was not the right approach.
Experiences of delivering peer work to young people with personality disorders
Rachel Sherlock
Aim: Youth peer workers are people with lived experience, who have received training in peer work. Peer support is a service that is provided at Orygen’s headspace centres in the North-Western suburbs of Melbourne, Victoria. In this presentation, I will describe my experiences of delivering peer work to young people with personality disorder (PD).
Method: Over a period of two years, I have provided peer support to young people aged between 12-25 years as part of routine care at headspace. Over the past 6 months I have also been providing peer support to people specifically living with PD as part of the Evaluation of Screening measures and relational Peer Work (EScAPe) trial. The aim of this project was to establish if a relational model of peer work was safe and acceptable for young people with PD.
Results: For routine care at headspace, my peer work involves a wide variety of activities including 1:1 peer work sessions to approx. 15 young people at a time, running peer social groups, assisting with the running of the volunteer youth advocacy group and headspace community events, and providing input on service delivery and knowledge translation. For the EscAPe trial, up to 10 sessions of peer work was delivered for a duration of up to 13 weeks. I was provided with relational peer work training as well as lived experience and clinical supervision to effectively deliver this peer support. Overall, I was able to see 5 young people presenting with PD. I will deliver my perspective on providing peer support to those with PD and how clinical services can aim to embed peer support for those with PD.
Conclusions: Peer support is an essential element of youth mental health care.
Supporting the families supporting a young person with a personality disorder using the lived experience
Susan Preece
Aim: Family Lived Experience Workers (FLEWs) are an under utilised force to alleviate family/friend’s distress when their young person is developing a personality disorder (PD).
Method: This presentation will detail my work as a FLEW at Orygen, in Melbourne, Australia.
Results: Because FLEWs are non clinical, they provide support using their lived experience of caring for a young person with mental ill-health, which additionally benefits the young person’s recovery by bolstering a supportive family network. A FLEW can communicate with a family member in a unique way bringing a normalising presence and can routinely reinforce messages of hope and perseverance in a cohort of families who may have had inadequate or bruising clinical services before. A FLEW can demystify some of the common questions families ask, ‘What is adolescent behaviour and what are features of a PD? Is my young person safe? Am I a good enough parent?’ FLEWs can share from their own personal experience (or the experience of others) of ways of communicating with the young person as well as reframing the hopes and expectations family members have for the future of their young person.
Conclusion: FLEWs play a valuable role in early intervention, supporting the family and friends of young people with PD.