BIGSPD (British & Irish Group for the Study of Personality Disorder) currently have vacancies for two new Executive Committee members. The group currently has a Co-Produced Presidency, with Lived Experience Practitioner (LXP) Dr. Julia Blazdell sharing the post with Dr. Oliver Dale. However, look to the wider membership of the Executive Committee, and there is no other LXP representation. This could all be about to change. Amongst the six candidates up for election, three of them are LXPs. One of those three is me!
I am very proud to be campaigning for votes alongside two valued LXP colleagues - Hollie Berrigan (Service User Lead, Beam Consultancy) and Melanie Ball (Peer Support Lead, Central & North West London NHS Trust).
BIGSPD holds annual conference that actively aims for 10% lived experience attendance, welcomes applications from LXP speakers, and has historically had strong links with Emergence CIC, a service user led organisation, prior to it becoming a casualty to Austerity cuts several years ago. Ex-Emergence colleagues like myself, Hollie and Mel were left with no organisational support, and found attending the conference, networking with & supporting each other invaluable in keeping going in that post-Emergence wilderness.
Despite the relative support of BIGSPD towards LXPs in comparison to many other conferences, getting LXP representation onto the Executive Committee won't be easy. Traditionally these places have been taken by clinicians with established careers and achievements in the field. BIGSPD membership is roughly £50 a year, and this mainly consists of clinicians. Very few LXPs are members, mainly because LXPs tend to be in precarious and low paid employment. Whilst there is a £25 membership option for people who are unwaged, this does not apply to the majority of LXPs, who have low incomes. In other words, for us to get voted in, we will mainly be relying on the goodwill of allies rather than LXPs themselves. This years BIGSPD awards saw the membership vote for the LXP 'Post Personality Pioneers' collaborative's supervision work. We know that we have support amongst members, and strong allies. However, we do not know until the votes are in whether members will take the opportunity to increase LXP representation on the Exec Committee.
My campaign for votes centres on wanting to address gaps within BIGSPD that include but go beyond LXP representation. This year, during a 2am conversation in the bar at the conference, we talked about the missing faces. Very few attendees - LXPs or clinicians - were from BAME groups. Personality Disorder as a diagnosis is the polar opposite to Psychosis in terms of the people who receive the label. Psychosis has an over-representation of Black men, Personality Disorder has an over-representation of White women. However, when we look at root causes associated with this disorder - namely, developmental trauma - does it really make sense that there is an ethnicity barrier? As an example, I fit that White Female stereotype aesthetically. However, I am Mixed Heritage, and my darker siblings, who have a similar upbringing and background, have different diagnoses to me. My brother accesses some of the stereotypical services and pharmaceutical interventions you would associate with a Black man, which fits his aesthetic. My point is that growing up within a Mixed Heritage world, knowing the similarities of our core needs, I see that there are some interventions which become inaccessible to some people because of the labels they are given, often connected to how we look externally. Do the missing faces provide an understanding of developmental trauma we are missing? Part of the missing jigsaw includes clinicians from BAME groups. A friend told me how important she found seeing a Black psychologist, who instantly knew and did not question explanations of trauma caused by being an isolated Black face in a room, from overt racism to microaggressions that are often not spoken of or understood except by those who experience them. The perspective of clinicians who can provide insight in this area is a valuable part of the picture we could do well to understand better, particularly as this diagnosis needs to be situated within a social and cultural understanding.
With the closure of Emergence, there has been a dip in the high profile national and regional service user led or collabrative work. As LXPs scattered to become lone agents, it has been hard to maintain the high level of co-produced practice and research being showcased at BIGSPD. Individuals have worked hard and banded together where possible, however without a central powerhouse to advocate and draw us together, the levels of what could be achieved have dropped. One of my priorities as a BIGSPD Exec Committee member would be to ensure that I could bring the both the issues and solutions of my LXP colleagues into the room. We need to work towards developing closer links, supporting and collaborating, ensuring that they are part of setting the agenda and design of the research we present at future conferences. I am actively doing this within the NHS, LXP collaborations and wider political lobbying, I would particularly love to be able to link this with the work of the BIGSPD committee.
One of the criticisms that we face as LXPs is not having an equal level of training, an understanding of scientific approaches or research. My experience of working in this area is that the opposite is true - I work with some incredibly talented colleagues who often have a wide range of skillsets, education and experience. We often need to use a strong understanding of academia or research to challenge established ideas and translate our own and other's experiences into this language, in order to be heard and influence change that will genuinely help us function in a world that struggles to connect with us. Working from an experiential lens often comes with sacrifices in terms of financial reward and opportunities academically and within employment. If we could work to reduce the impact of these barriers, we could see the return of more of the high quality collaborations where LXPs have set research questions and method, or designed and developed service interventions. Part of being able to do this is having more of us working within the committee and demonstrating that this can be the norm rather than the exception.
Creating stronger regional links through the BIGSPD communities of practice is one opportunity to develop the way we work with LXPs. We can also develop links with areas that have been overlooked for years - as a Birmingham resident, I have always been conscious of the weaker links that the Midlands has with national work in the field of personality disorder compared to the North and South. I would love to be part of trying to ensure that practice, links and knowledge in the field of 'personality disorder' become more equal geographically.
I could probably write a book that would never be finished on why I would love to work with the BIGSPD committee. If you are interested in understanding more about my background and CV, you can find that here. However, rather than rendering this blog into War and Peace, I will say that I have complete confidence in ALL of the LXP candidates, and would ask that if you are a BIGSPD member, you would use your two votes to support and vote for us. I care very much about changing the way we approach 'Personality Disorder' and ensuring that more of us who live with this diagnosis have access to interventions that help and are treated with the compassion, kindness and humanity that we deserve. This will remain constant whatever the outcome of the BIGSPD elections, and what I love about my fellow LXP candidates is that I know that I could approach either Hollie or Mel to communicate LXP issues and also support whatever work they were doing to develop solutions.
Votes close on 31 July - so if you are a member, please use your votes to support us. If you aren't a member, do consider joining to support us - membership has many other benefits including:
Electronic access to the journal Personality and Mental Health, worth £109
A discount on the Annual Conference registration
Free place to Communities of Practice events
Eligibility to nominate and vote on BIGSPD awards
Eligibility to vote at the AGM
Member newsletters and updates
Previous Blog: https://www.pinkskythinking.com/post/7-day-blog-challenge
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