Dr Oliver Dale
Affiliations: BIGSPD, Sussex Partnership Foundation Trust
Contact details: [email protected]
Dr Julia Blazdell
Affiliations: BIGSPD
Introduction
On 13th June 2023, the 23rd Annual Conference of The British and Irish Group for the Study of Personality Disorder (BIGSPD) opened in Glasgow. BIGSPD is the leading UK organisation dedicated to the field of practice of personality disorder. Its aim is to create a learning environment underpinned by knowledge derived from both professional and lived experience. This editorial is written to mark a new association between BIGSPD and this journal.
BIGSPD is a membership organisation led by an elected executive. It delivers an annual conference alongside smaller community of practice events held throughout the year. This was our biggest conference to date with 522 delegates and represents a considerable expansion over recent years. The delegates’ demographic is notably different to many learned organisations given that at least 16%, and possibly as many as 30% of attendees, identify with a lived experience of a personality disorder diagnosis. We believe that this mixture of lived and professional experience creates a much more relevant understanding of the needs of those we are aiming to help.
A brief history of BIGSPD
BIGSPD was formed in 1999 by Professor Peter Tyrer. It was initially focussed on providing a forum for academics to share their work. Peter's presidency was followed by Professors Conor Duggan, Kate Davidson and Mike Crawford over subsequent years. The organisation was founded on the principles of scientific study and learning with byelaws written in 2009. These byelaws and the workings of BIGSPD are reviewed by the membership at an annual general meeting.
This scientific interest group was joined by the Department of Health’s National Personality Disorder Programme (2003 to 2011)(National Institute for Mental Health England, 2003). Through their roles in leading the programme, Dr Rex Haigh and Dr Nick Benefield were keen to involve the 11 community pilot projects, the forensic parts of the programme and the Knowledge and Understanding Framework (KUF). Accordingly, a practitioner presence began to grow but, crucially within this, the inclusion of the KUF programme also brought lived experience practitioners.
It was the appointment of the late Dr Steve Pearce as President who perhaps marked a shift to an increasing practitioner emphasis. Steve's presidency was subsequently followed by the first Co-Presidency involving lived and professional experience with Tom Mullen and Kath Lovell taking on the role in 2015. Accordingly, two key aspects of BIGSPD became established with this scientific and practitioner interest in place.
A key decision taken by Tom and Kath was to create a bursary system to fund 10% of conference places for people with a lived experience. This, amongst other changes, oversaw a shift in the conversation with space given to those that had previously been excluded. This also meant opening the doors and giving a platform to those critical of the scientific methodology applied as well as an authoritative voice to the harms and limitations of services and current practice. The conference was becoming one within which the conflict out there was brought inside and explored.
In recent years whilst the dialogue has been uncomfortable at times, it has held within it an intellectual and experiential learning that is much more representative of the reality that people who use services, their carers and the staff face. Following our election as co-presidents in Cardiff in 2018, we have built on the work of our predecessors: aiming to make the conference more accessible and inclusive, yet continuing to confront what is difficult.
BIGSPD: Aims and values
The central concern of BIGSPD is to curate and host an annual conference to explore recent developments. This includes advances in research and innovations in therapeutic interventions, but also extends beyond to explore the concerns, dilemmas and debates that are etched across one of the most contested areas in mental health care. The main driver of the conference is to enhance knowledge and understanding to better provide care and support to people who attract the diagnosis of ‘personality disorder’.
The aim of BIGSPD is to create a forum where differences (in experience, in understanding, in treatment modality, in culture and context) can be thought about. Often the forum is more like a crucible. Heat is generated as much from the contested nature of the diagnosis and label of ‘personality disorder’ itself as from the diversity of speakers and delegates who attend the conference. Unlike a more ‘scientific’ conference where the subject of study is ‘out there’, far beyond the conference walls, BIGSPD actively welcomes inside people with a lived experience of the very ‘thing’ it will be talking about. We believe that it is only through dialogue – however discordant – that we can begin to embrace a truly relational way of thinking and working.
To enable these encounters to be both permissive yet contained, members of the BIGSPD Executive (Gary Lamph, Tamar Jeynes, Keir Harding and Kirsten Barnicot) coproduced a Values Statement that is revised at regular intervals. The Values Statement is built on three pillars of knowledge: professional experience, lived experience and research development. It seeks to frame and to steer the conference agenda by acknowledging the central importance of diversity, inclusion and coproduction; highlighting the psycho-social inequalities of health and valuing the role that critical reflection can bring to improving knowledge and understanding.
The Values Statement seeks to enable the juxtaposition of different perspectives. It attempts to ward off BIGSPD becoming yet another echo chamber. It endeavours to create a dynamic space for robust debate. Such an approach is a democratic one and during this year’s conference we had Gary Winship remind us that democracy is not an approach that avoids conflict, rather it is the provision of a framework within which conflict can be held, explored and experienced. It is a messy imperfect process, but the alternative is a false comfort derived through the exclusion of one group or another.
No Longer a Diagnosis of Exclusion: 20 years on
2023 marks a significant year in the history of ‘personality disorder’ since it is 20 years since the publication of the policy guidance, Personality Disorder: No Longer a Diagnosis of Exclusion (NIMHE, 2003)(National Institute for Mental Health England, 2003). We wanted the 20-year anniversary to act as a backdrop to this year’s conference: to act as an impetus to reflect on how far people’s experiences of services (their lived experience and their clinical experience) have changed over the intervening years.
As the copresidents of BIGSPD, we tried to model something of this thinking in our opening address to conference. Julia recounted how, 20 years ago, she was detained in an old Victorian psychiatric hospital where therapeutic input was limited to the thrice-daily administration of psychopharmaceuticals. Although ‘personality disorder’ was being considered as a diagnosis, her lead psychiatrist initially baulked at this since, he claimed, she ‘would never work again’ if he were to make such a diagnosis. Meanwhile, 20 years ago, Oliver was a young psychiatrist perplexed by the way in which people with a diagnosis of ‘personality disorder’ were treated and looking, often in vain, for knowledge and guidance from senior clinical colleagues.
Both reflections spoke to the stigma, prejudice and exclusion that surrounds the diagnosis of ‘personality disorder’ albeit from different sides of the clinical relationship. They also spoke to the hope that opportunities for learning from one another can bring.
Controversies
Such learning is not easy however, and the debates that concern BIGSPD are uncomfortable, even difficult, and this year’s conference was no different. Our opening address cautioned delegates and speakers alike that they were about to embark on a conference that would inevitably cause discomfort and that it would challenge their thinking and perspective. Our request was to bear with it: to remain curious and to listen to the messages that such discomfort might bring.
A particular challenge for delegates is that inevitably once one speaks to a discomfort, about say a harmful aspect of the patient-practitioner relationship, it might lead one to feel guilty in some manner. Dr Satbinder Bhogal's plenary on intersectionality and inclusion was therefore a timely reminder of the importance of being curious about how we might be complicit in harm and called on us to use the power we have as individuals, no matter how seemingly small, in a broader system. Reflecting on what we are realistically responsible for and how we might influence change through the roles we have is an important grounding exercise, focusing us on our primary task.
The fact is that we operate in systems that have both harmful and helpful aspects and our job is to remain a helpful agent within such systems. A concrete example might be the contested nature of the personality disorder construct itself. Many find the argument of the importance of classification convincing even if the two words “personality” and “disorder” are not intrinsically necessary and should be subject to change. It fell to Professor Giles Newton Howse, speaking in his capacity as President of ISSPD, to help us explore our ambivalent relationship to the term personality disorder. Giles gave a balanced account of the artificial nature of psychiatric taxonomy, its limitations, but crucially its benefits and opportunities.
Accepting that there are both beneficial and harmful aspects to this term personality disorder, the job of conference is not to tackle that issue head on. BIGSPD's role is to give delegates a space to consider these aspects so they may contribute to the solutions needed to improve the system and contribute to broader sustainable change through their working lives and careers. Sometimes, quite literally as we did when we hosted a world café event specifically looking at the label (Lamph et al., 2022). As such, the BIGSPD executive believe our greatest contribution to the field is to create a learning environment through providing a mirror to the field of personality disorder. This belief is often challenged because it means we provide a mirror for a system which is deeply flawed. This inevitably means that those flaws are also there within conference.
Calls for the term ‘personality disorder’ to be dropped are loudest in the UK. Such calls have led BIGSPD to question whether we are ahead of the curve or are on a curve all of our own. This question demands serious attention if we are to effect genuine system change. However, we believe that to achieve change we must remain firmly within systems. This is the crux of the dilemma that confronts BIGSPD. To be the learning organisation that achieves change we must be critical of the system whilst being a part of it.
Such an approach tests us at every turn as there are parts of such a system that we wish to disown, an example being Serenity Integrated Mentoring (or SIM). The now discredited police and mental health collaboration sought to prevent the use of crisis services by people who accessed services frequently, so-called ‘High Intensity Users’. BIGSPD’s job here is not simply to castigate the punitive practice that ensued, but to seek to understand the system that created the conditions within which such practice was deemed acceptable. For these conditions are, we would suggest, still just as present today even if the SIM service has been abandoned. Similarly, the conditions which make the private sector a part of our broader system remain. To remove private sector providers as advertisers might make us feel better, but it invites us to become less representative of a system and in denial of the realities that create the conditions for the private sector to thrive. Instead, our approach has been to ensure a broader array of advertisers that are more representative of our health and social care systems.
We never quite know what such juxtapositions might create. The pressure to variously apologise, get rid of or manage away disagreements or discomfort is always very powerful. We only hope that our aim to open up spaces (for advertising, for discussion, for debate) can act as an antidote to the desire to exclude those parts that we find controversial.
That said, BIGSPD has tried to understand the concerns that underpin private sector provision through investigating the monitoring systems for the use of private out of area placements, the scale of their use, and the treatment and expertise on offer(Zimbron et al., 2022). Addressing such exclusion through scientific approaches alone is not easy and we need to appeal through both our head and our heart.
In our opening address we referenced Bob Hinshelwood (Hinshelwood, 1999)who, describes a dual aspect of psychiatric practice. The first, the approach of the scientific mind: where the needs of the patient are considered scientifically and the individual is understood as a ‘scientific object’. As such, classification, epidemiology, and interventions are designed and evaluated, giving us the evidence required to develop, design and commission interventions. Although ethics can offer some safeguards, these findings risk objectification and de-contextualisation which in this case means dehumanisation and ultimately undermining the primary task.
The second aspect offered by Hinshelwood is an understanding of the patient as a “suffering subject”. In doing so, the patient is considered as a unique individual, as a human being with a story, first in need of human relationships and secondly of interventions. It is within this framework that we deliver care, offer compassion and create respect. Without the structure, logic, and rules of objectivity though, it would be too easy to get lost and overwhelmed in despair, anger, and confusion.
Our aim is to contextualise the science in order to create a better understanding of it, even if that is uncomfortable. Professor Sabine Herpetz’s plenary captured something of this dilemma when she presented the neurological changes associated with adverse childhood experiences and their subsequent difficulties in social functioning and theory of mind. There were important and broad-ranging implications in her talk for understanding relational difficulties, as well as implications for the design of therapies and other interventions for people accessing services.
There was plenty for clinicians and policy makers to take away here, but as a lived experience member explained in the Q&A that followed, the presentation was distressing to hear. Some had found the presentation offensive through the sense of ‘othering’ it seemed to convey. For a moment, conference wondered anxiously whether it was possible to both digest the findings presented as well as the impact the presentation had on the delegates. The moment also promised a deeper appreciation of how methodology, language and attempts at further understanding can be experienced as alienating and distressing by those it ultimately seeks to help.
Detractors suggest that BIGSPD is not the place for ‘serious science’. Is it possible to consider the findings of a presentation with an audience so invested in the subject? To do so might make it more comfortable but, we would argue, at the cost of really understanding what our work means to people. At BIGSPD, our challenge is to strike a balance to create a forum within which different understandings can be applied and formed and suggest science has a lot to learn from experiential learning and vice versa.
It is a philosophical statement that truth comes as much from feeling as fact. For BIGSPD, this goes beyond the philosophy of I feel therefore I am versus I think therefore I am. It is where we hope to not only hear both truths but to understand them and the differences they hold. The trouble comes when we confuse which is which, or when there is a lack of opportunity to integrate feeling and thinking. If we are not careful, we tend to seek information that simply makes us feel better. Many feelings are aversive and prompt a desire to exclude. The learning from despair and pain is as critical as learning from safety or pleasure. An example of such might be found in a well-known American news corporation whose legal battles of 2023 laid bare internal communications highlighting how executives had knowingly deceived their audience simply because they did not want to offend them. For us the challenge is to strike the right balance, to create just the right amount of discomfort.
Such a process demands testimony, narrative and inclusion. It also requires compassion and a wish to understand. Professor Hel Spandler’s talk on restorative justice in mental health generally and the field of personality disorder in particular was truly inspirational for her call to seek justice and truth in a way that did not shut down or shut out through shaming. Describing such an approach as Calling "In" as opposed to Calling "Out", she invited us to remain curious about our prejudice and our capacity to cause harm.
For now, the BIGSPD executive and its administrators, Northern Networking, will reflect on the experience of 2023. Have we struck this balance between object and subject? Have we challenged the system and its' thinking in a way that genuinely moves us on? And are we still inside the system or have we crept outside of it? As our plans for the next conference in Belfast in 2024 take shape, we will hold these tensions in mind and would encourage those interested in the challenge to get involved either by submitting an abstract or joining us there.
References
Hinshelwood, R.D. (1999), “The difficult patient”, British Journal of Psychiatry, Vol. 174 No. 3, doi: 10.1192/bjp.174.3.187.
Lamph, G., Dorothy, J., Jeynes, T., Coak, A., Jassat, R., Elliott, A., McKeown, M., et al. (2022), “A qualitative study of the label of personality disorder from the perspectives of people with lived experience and occupational experience”, Mental Health Review Journal, Vol. 27 No. 1, pp. 31–47, doi: 10.1108/MHRJ-05-2020-0035.
National Institute for Mental Health England. (2003), National Institute for Mental Health for England (2003) Personality Disorder: No Longer a Diagnosis of Exclusion.
Zimbron, J., Harding, K., Jones, E., Jones, V. and Dale, O. (2022), Out of Area Placements for People with a Personality Disorder Diagnosis in England. BIGSPD