Content note: suicide, child abuse, iatrogenic trauma
The British and Irish Group for the Study of Personality Disorder (BIGSPD) are an organisation formed in 1999 to provide a forum for networking in the field of personality disorder. They run a popular conference annually that aims to feature new research, service developments and user involvement.
The personality disorder field is often contentious. However, despite their long history and established following, BIGSPD will not be drawn on their stance on these contentious issues.
In the values section of their website, BIGSPD state:
“Often people ask, ‘what is the stance of BIGSPD?’ on, for example, the diagnostic term ‘personality disorder’, diagnostic manuals, treatment preferences, or the future direction of treatments… All our members, conference delegates and executive members have a unique range of views and opinions but collectively BIGSPD as an organisation does not hold a position on these debates.”
This is a common argument by organisations who want to appeal to the widest possible audience. By refusing to take a stance on important issues, they avoid the risk of having to take responsibility for their views one way or another. It gives an appearance of neutrality, even superiority, and means that collectively the organisation does not have to be held accountable for their views.
In this blog I will attempt to identify the values that underpin BIGSPD’s ethos by examining their actions rather than words.
Sponsorship and platforming of private healthcare providers
BIGSPD has continued to platform private providers, such as Cygnet and St Andrews. This has included taking their money for sponsorship, giving them exhibition stands and allowing their staff to present at the conference.
Conversely, several of the most senior members of BIGSPD claim to be critical of these providers. The Out of Area Placement Report was a project funded by BIGSPD and authored by both experts by experience and professionals in the personality disorder field, including several members of the BIGSPD executive committee. The report looked at out of area placements where people with a personality disorder diagnosis can be detained, of which 99% are private providers. The findings were damning: lack of information on numbers and outcomes for these patients, with 97% recognised as being inappropriately placed. A report funded by BIGSPD on the national scandal of out of area placements is reminiscent of the tobacco’s industry long history of funding smoking cessation research, tools and alternatives. BIGSPD can’t continue to take the money of private providers while also reporting their wide-spread misuse. Keir Harding, one of the co-authors of the report and the membership officer on BIGSPD’s executive committee, runs a consultancy business that helps NHS Trusts avoid out of area placements for people with a personality disorder. It seems incongruent to make a career out of advocating against out of area placements while also being a senior member of an organisation that takes their money.
Similarly, BIGSPD have no problem allowing these providers to pay for exhibit spaces to ‘showcase’ their services, with seemingly no regard for the quality or safety of these services. In 2019 the Cygnet exhibit stand included a competition to win an Amazon Echo Dot. On the same day, Claire Greaves parents were being told at her inquest that failings in her care at a Cygnet-run ward “contributed or caused” her death.
BIGSPD has also invited these providers to present at their conference. At BIGSPD 2021, the lead occupational therapist from Cygnet Beckton gave a presentation about the development of co-production with carers, despite the fact that the CQC had rated the service inadequate, taken urgent enforcement action and placed the hospital into special measures.
It is examples like these that demonstrate the reality for patients who suffer great harm and even die in these hospitals. The human cost of this practice extends to the family and friends of patients who have lost their lives in these placements. A shiny brochure at a conference stand is an insult to all those harmed by these providers.
Serenity Integrated Monitoring (SIM) was an initiative created by ex Hampshire police Sergeant Paul Jennings. It embedded police in mental health teams to monitor patients identified as ‘high intensity’ users of services. In practice this meant service users were subject to threats of legal action for placing high demand on health and emergency services, meaning they could be arrested and charged for something as simple as phoning 999 when suicidal. Services such as A&E and ambulance were instructed not to treat these patients, including their physical health needs.
Jennings attended multiple BIGSPD conferences and used the opportunity to promote his work. He credits BIGSPD as shaping his development of SIM including the name and the initiative’s ethos of personal responsibility.
The SIM programme went on to receive many awards, accolades and high profile support before a campaign by the Stop SIM coalition shed light on the human rights abuse, lack of evidence base, data breaches and devastating effects of criminalising suicidal people. NHS England’s national clinical director for mental health, Tim Kendall, ordered a review of SIM as a result of their campaign.
Prof Peter Fonagy was another early supporter of SIM and has also presented at BIGSPD multiple times. He was the lead researcher for the feasibility study which found no evidence base for the initiative and called for urgent evaluation before it continued to be rolled out. Despite this, the study was buried for 18 months and only made public after the Stop SIM campaign uncovered it.
There has been criticism from the survivor community that BIGSPD has never issued a statement on SIM, nor apologised for platforming its creators and supporters. On a podcast at the 2021 conference, the co-presidents of BIGSPD, Dr Oliver Dale and Dr Julia Blazdell, had a conversation about why they chose not to release a statement. They explained that they had drafted one and it “went through many hands” but it was ultimately rejected by the executive committee because of “very divided opinion”. They suggested that releasing a statement would not be in line with their organisation’s aim to allow for diverse views and worried that releasing a statement would shut down conversation. They went on to say that by the time Tim Kendall had ordered the review into SIM they felt “the imperative seemed to lessen” and that it felt “too late” to issue a statement.
It is not unreasonable to expect an organisation that gave SIM a platform to release a statement on their position. Far from allowing conversation, not releasing a statement results in no conversation at all. Suggesting SIM is simply another issue that is up for debate further legitimises a scheme that has now been widely condemned as un-evidenced and un-safe. It is offensive to wish to appear neutral, or ‘see both sides of the debate’ on issues of human rights abuse.
It also shows BIGSPD’s colossal misunderstanding of the expectation in the survivor community. Whilst a statement about their position on SIM would be viewed as a necessary minimum for many, more pertinent would be an apology for the multiple opportunities given to Jennings to promote his work. If the BIGSPD executive committee feels it’s “too late”, it begs the question: why is it too late to apologise? Who is it too late for?
The CALMED trial was a Randomised Control Trial (RCT) run by Prof Mike Crawford, former president of BIGSPD, that trialled prescribing clozapine for people diagnosed with Borderline Personality Disorder (BPD). Clozapine is a controversial antipsychotic drug known for potentially life-threatening side effects including seizures, cardiovascular and respiratory effects, and potentially fatal white blood cell deficiency. It is indicated in patients with schizophrenia who have not responded to other antipsychotics, but has been used off-label for people with BPD in long-term units and secure settings. Rather than recruit participants from these settings only, the CALMED trial recruited participants from any general mental health wards and did not specify the severity of participant’s BPD diagnosis, meaning those with only mild symptoms or ‘traits’ would be eligible to take part. It was also not using clozapine as a last resort intervention, with no specification that clients must have tried and failed to benefit from psychological therapies before being put on to the trial.
After a campaign led by Recovery in the Bin, the trial was temporarily halted over Christmas 2019 and was reopened after inclusion criteria were amended to make sure only people with severe BPD would be taking part.
The trial has now concluded and after multiple setbacks, including failing to recruit the planned number of participants, the evidence from the trial seems to be minimal. Prof Crawford will be presenting his conclusions at BIGSPD 2022. The trial cost public funds £1,768,776.18 and recruited only 29 participants.
Focus on sex offending
BIGSPD conferences have often covered forensic presentations, including sex offending. In 2012, Dr Jessica Yakeley and Dr Heather Wood gave a presentation entitled, ‘Paraphilias and personality disorder – are they linked?’, a theme that has continued to be explored in BIGSPD conferences since. In 2019, Dr Jackie Craissati gave a talk on “community outcomes for high risk personality disordered sex offenders, with a focus on learning from ‘failure’”. During the session, several attendees tweeted the content of the talk, including the questions “should we separate perpetrators and victims? Are perpetrators and victims separate entities?”. The idea that it might be difficult to separate victims from perpetrators is an affront to anyone who has suffered childhood sexual abuse. There is a clear difference between victims of childhood sexual abuse who don’t go on to abuse and those who, as adults with the capacity to make their own choices, decide to commit such offences. Finding commonalities may help the perpetrator, and the clinicians who treat them, to encourage understanding and compassion, but it certainly does not help the victims. It can also be traumatising for survivors because it creates fear that they could be capable of abuse, solely because they themselves were abused, adding to the guilt and shame of their experience.
Dr Craissati has also suggested that there are different “levels” of child abuse. In an Independent article from 2014, she states:
“There’s a difference between the bombmaker, and the man who tries to kill his partner, and the man who attacks someone in the pub… But if you make the same point about child sexual abuse, people say, how dare you?”
The conceptualising of childhood sexual abuse in this way calls into question whether BIGSPD is a safe place for survivors of sexual abuse to even attend. Undoubtedly it is important for research and treatment to be developed for perpetrators of sexual violence. However, given that many people with a personality disorder label, especially borderline personality disorder, have suffered childhood sexual abuse, BIGSPD should take more concern to protect victims of sexual violence from this contentious rhetoric.
Personality Disorder ‘experts’
BIGSPD continues to endorse ‘experts’ in the personality disorder industry, many whom court controversy. Prof Peter Tyrer, a former president of the association and many-time speaker at BIGSPD conferences, has repeatedly used out-dated and inflammatory language to describe personality disorder patients. In his book, ‘Taming the Beast Within: Shredding the Stereotypes of Personality Disorder’ he refers to impulsivity in patients with the diagnosis as “yo-yo gremlins” and draws heavily on examples of patients who are violent or who he believes are faking their symptoms. It is telling that I would not be able to begin to cover the many instances of inflammatory language from Prof Tyrer in this blog without turning it into a 10,000 word dissertation. Despite this, his influence remains undiminished and BIGSPD have regularly welcomed him to their conference over the years.
Another former president of BIGSPD, Prof Conor Duggan, has caused controversy in recent months. In March of this year, The Royal College of Psychiatrists (RCpsych) sent promotional material to members of an upcoming training session on personality disorder run by Prof Duggan. The material described personality disorder patients as “a thorn in the flesh” of clinicians, with “a tenacious hold” over the professionals who treat them. After an online outcry from professionals and service users alike, RCPsych have since withdrawn the training. However, Prof Duggan has run this course multiple times, possibly for many years, and RCPsych have yet to answer questions on how many mental health professionals received his training.
Dr Joel Paris is another personality disorder ‘expert’ who has a long-standing relationship with BIGSPD, having been invited to speak at several past events. Dr Paris is perhaps most well-known for his assertion that patients with BPD do not benefit from psychiatric hospital admissions. This idea has been adopted into UK mental health policy and national NICE guidance on the treatment of BPD states that hospital admissions should be avoided. However, the gate-keeping of these patients from hospital has led to failings in care and even the deaths of some patients. Sally Mays, a 22 year old woman with a BPD diagnosis, died in July 2014 after she was refused admission to hospital, despite escalating concerns about her safety. An inquest found that the failure to admit her constituted neglect and in January of this year, one of the mental health nurses who carried out the assessment was struck off by the Nursing and Midwifery Council.
Dr Paris’ assertions of a ‘less is more’ approach for BPD patients plays into a political landscape of an NHS desperate to cut costs and mental health professionals often hostile and already reluctant to treat those with the diagnosis. Such views legitimise the idea that it is acceptable to exclude patients with the BPD label from life-saving physical and mental health care.
Broadening the definition of personality disorder
An issue that has become a focus in recent years is the re-naming, re-branding and broadening of the definition of personality disorder. This has been done by proposing the diagnosis is given to children and young people through the label ‘Emerging Personality Disorder’, and by identifying people who may not fit all of the diagnostic criteria but could still be treated under personality disorder protocols. The most obvious example of this is the use of the term Complex Emotional Needs (CEN). CEN does not exist in any diagnostic manual but is increasingly used in research and services to refer to people who either have, or are suspected of having, a personality disorder.
Some people suggest that CEN is a less stigmatising term than personality disorder. However, by using vague, euphemistic terms, stigma can easily be transferred from one label to the next. It is also reminiscent of how many people with a personality disorder label are diagnosed: without ever being told, only to find out it has been written on their notes for many years. CEN is dishonest and risks perpetuating harm. Smoke and mirrors around an already secretive diagnostic can only be damaging.
BIGSPD have increasingly accepted presenters at the conference who use terms such as CEN. At the 2022 event, one service will be presenting an intervention they have designed for “sub-threshold BPD”, a categorisation for individuals who don’t meet the criteria for BPD but are identified to be treated using personality disorder service principles. This insidious widening of the personality disorder industry will only get worse as the recent ICD-11 changes to personality disorder classification are established in services.
A survivors perspective
It is my firm belief that those who choose to align themselves with BIGSPD are crossing an unacceptable ideological line. That might be difficult to hear. I have no doubt that some of the delegates have good intentions and do important work, particularly those with lived experience who’s work often comes at great cost to themselves. However, to ignore BIGSPD’s continual disregard for survivor concerns, year after year, is to be complicit.
It replicates the dynamics that many of us with the personality disorder label are used to when interacting with those claiming to have our best interests. Valid concerns are rarely addressed directly; instead questions are turned back on us and answers are vague, often dressed up in psychological language or euphemisms. Accountability or apology is rare.
Attending BIGSPD is no longer a neutral act. Whilst the organisation claims to be open to hearing from critical voices, these voices are quickly assimilated into the dominant narrative and are ultimately used to maintain the status quo. If BIGSPD does want to hear from more radical survivor voices, they mustn’t just learn to do better, they must revolutionise.
Thank you to Jee for his help in researching this blog