What is it like to attend BIGSPD as a personality disorder activist?

This is the second blog in our series about the British and Irish Group for the Study of Personality Disorder (BIGSPD) conference. While the first was a perspective from the outside, this will tell the view from the inside.

In 2017, the survivor activist group Personality Disorder in the Bin (PD in the Bin) was invited to attend the BIGSPD conference. PD in the Bin describe themselves as, “a collective space for all those wishing to resist, oppose or critique the label personality disorder”. The following is the recollections of two of their representatives, S and P, attending the conference in 2017, 2018 and 2019.

Inverness 2017

We attended BIGSPD 17 after being asked to fill in for someone who had dropped out. We had been invited to give a lived-experience workshop critiquing the personality disorder label, which we believe is dehumanising and encourages a system and society to blame us for understandable reactions to distressing life circumstances.

Before our workshop, psychologist Dr Lucy Johnstone presented. Dr Johnstone had been invited to be a keynote speaker and was challenging the validity of the diagnosis of personality disorder by outlining the principles of her forthcoming non-medical framework for understanding distress (later named the Power Threat Meaning Framework), as well promoting her book, ‘A Straight Talking Introduction to Psychiatric Diagnosis’. She had brought a stack of copies of this book with her and after the presentation she came up to the two of us and gave us one copy. Bizarrely, she then asked us if we could mention her in our upcoming workshop (we declined). It felt like people were there for their own motives.

Dr Johnstone’s keynote appeared to be well received. The room listened politely and even appeared to join the debate. Someone even raised the question of what they will call BIGSPD next year if they can no longer use the personality disorder label.

We were on straight after Dr Johnstone’s keynote. We detailed our position on the harm of the personality disorder label and our belief that we have intrinsic value as human beings whether or not we are ‘resistant to change’, ‘disengaged’ or ‘lacking insight’. We do not need to be pathologised, labelled, oppressed and pressured into programmes, courses and therapies in order to become acceptable. A key part of this is our critique of Dialectical Behavioural Therapy (DBT) and radical acceptance as a therapeutic aim, both of which we believe are oppressive.

In response to this critique it was asserted that we simply didn’t understand what was meant by radical acceptance or DBT concepts. While our experience at the 2017 conference was that people were mostly civil to us, it still felt that the activist perspective from which our anti-diagnosis critique originates from, was not fully welcomed.

Prof Peter Fonagy the father of the Mentalisation based approach was another keynote speaker and presented on “P factor” theory. Our impression of this was that people with borderline personality disorder have a propensity for psychopathology in that we lack resilience and social communication abilities and are purely pathetic personality-flawed people. We therefore are to blame for our own predicament- it is nothing to do with our experiences of extreme childhood adversity and severe abuse- our histories are merely a trigger for “P factor” propensities and can therefore be ignored by those treating us.

The host area (Highlands and Islands) presentation spoke about their adoption of the “decider” as their key therapeutic tool for patients with BPD. This was a bouncy presentation and it did have some brightly coloured flashcards which looked quite attractive, but it seemed to be just a briefer and ultra cheap version of DBT. They still want to brainwash us they just don’t want to spend any money on the process apparently! It was infantilising and the resource looked like it would be most suitable for pre-school children. 

We were fortunate enough to have the opportunity to meet a lovely lived-experience presenter at the conference. Despite her totally internalising everything bad about BPD she had ever been told, she was of course a warm, kind, clever and all-round amazing woman. We loved spending time with her.

A cartoonist at BIGSPD drew an overview of our presentation

Cardiff 2018

We attended the presentation and panel discussion by Norman Lamb MP on ‘The Consensus Statement for People with Complex Mental Health Difficulties who are diagnosed with a Personality Disorder: shining lights in dark corners of people’s lives’. The work was spearheaded by Norman Lamb MP, former Minister for Care and Support, and Sue Sibbald, who campaigns on behalf of people with personality disorders following her own experience of being diagnosed. Despite this claiming to be a ‘consensus’ the general consensus was there was no consensus at all! It seemed that a lot of time, and no doubt money, had been put into an outcome that turned out to be ‘we all agree to disagree’. People acknowledged that the diagnosis harms people, but they also felt it was needed in order to get money for research and mental health organisations. It seemed that because there was no agreement on how the diagnosis would be replaced, it was better to maintain the status quo.

S. went outside for a cigarette after the presentation and tweeted about it. Psychologist Dr Jay Watts picked up on this and retweeted her live-tweeting of the event.

A prominent lived experience practioner came up to S. and said, ‘Why the fuck is Jay Watts tweeting about the conference? She’s not even here’. S. explained that she had probably seen the tweets, and that was all there was to it. ‘Are you PD in the Bin?’, she asked. Her tone was accusatory and it felt like there was animosity. S. explained that she was part of PD in the Bin but she herself was not PD in the Bin alone.

We were confused because we had thought we were welcome at the conference. The year that we had presented we had felt welcome but it seemed a switch had happened since, and we had suddenly become a threat. Were we not well behaved enough? Were we not ‘challenging’ the personality disorder construct in the right way? Although we are not aggressive, we will speak our minds.

Unfortunately this interaction set the tone for the whole conference.

The next presentation we attended was Prof Mike Crawford and colleagues discussing their proposal for the CALMED study, a double blind clinical trial to test the efficacy of clozapine for BPD-diagnosed patients who had dared to ‘fail’ to benefit from other previously prescribed anti-psychotic medication. 

However, it was apparently Prof Crawford’s personal view that clozapine was unlikely to benefit patients diagnosed with BPD. He acknowledged the significant adverse side effects and risks, the challenges in undertaking a placebo-controlled clinical trial of a drug that has the highest ‘Black Box’ warnings (i.e. it can kill you) of all psychiatric medications, and the requirement of weekly blood testing.  However, as Prof Crawford had anecdotal evidence that a number of psychiatrists were already prescribing clozapine for ‘difficult to treat BPD-diagnosed patients’, he believed evidence should be sought to show it’s efficacy or otherwise, and that justified exposing BPD-diagnosed patients to such significant adverse effects and risks. This also meant requiring patients in the placebo group to undergo unnecessary weekly blood tests.

We did question Prof Crawford on the potential harm of exposing patients to such a toxic drug if they probably weren’t going to benefit from it. However, his response was that it had been been put through the ethics committee so was justified.

The CALMED trial has now concluded. It was temporarily halted in 2019 after concerns were raised by service user activists, led by Recovery in the Bin, that the trial did not specify severity criteria for potential participants. As a result the trial’s participant criteria was amended. Although the study aimed to recruit 222 patients to the trial, not surprisingly, only 29 patients were recruited of which only 24 were still part of the trial at the six months follow up stage. They were only able to undertake detailed analysis on data from 21 cases. On the one hand, they acknowledged no firm conclusions could be drawn from such a small sample, however they reported there were indications that clozapine may have some benefit to patients diagnosed with severe BPD over and above a placebo. However, 5 out of 6 of the placebo group had actually guessed they were being given a placebo so any placebo effect would have been negated. The trial cost almost two million pounds.

The last presentation of the day was from Prof Peter Tyrer, who had recently published his book, ‘Taming the Beast Within: Shredding the Stereotypes of Personality Disorder’. He gave a workshop presentation about ‘nidotherapy’ his approach to treating patients with personality disorder that involved adapting their environment to suit their needs, based on ideas around providing a safe ‘nest’ in which they could thrive and be protected from harms and stresses. We have yet to come across any inpatient ward that could ever remotely resemble a safe nest and discharge planning is more likely to place patients in temporary homeless hostel accommodation than in a quaint country cottage with a rose garden. And of course, there is no protection from the relentless stream of brown envelopes from the DWP threatening to stop your benefits, which may result in you being evicted from your safe nest. Realistically it is hard to see how nidotherapy could work in practice. 

Prof Tyrer had brought one of his nidotherapy ‘guinea pigs’, flown over especially from Canada. However, the poor woman was subjected to sitting silently listening to him. She barely spoke, just giving yes or no answers, and we did not get a sense of her lived experience or thoughts about nidotherapy. He described her challenges and supposed deficits using inappropriate, paternalistic and derogatory terms. It was difficult to listen to and our hearts went out to her.   

After the presentation there were questions from the room and the majority were agreeing with him. Most weren’t actually questions but more along the lines of, ‘How wonderful Prof Tyrer, thank you’. At the time he was the chair of the ICD-11 Revision Group for the Classification of Personality Disorders and it was clear there were many young psychiatrists present hoping to get their kudos! 

A mental health nurse from Ireland in the audience had been taking notes throughout the presentation. Calmly and respectfully, she challenged him on his use of language. Prof Tyrer subsequently lost the plot. He started shouting at her, putting on a fake Irish accent, asking how dare she, who was she, that he does his best for his patients. At one point, still in a fake Irish accent, he referred to ‘her mammy’ and referenced ‘the troubles’. It was a jaw-dropping moment. 

Eventually Prof Tyrer seemed to calm down. The woman was shaken but continued to stand her ground. She started speaking again – still in a calm, respectful manner – because she obviously wanted to get her point across (and it was an important point to make). Prof Tyrer was not able to check himself and raised his voice again, denying that language really mattered. The woman left the room in tears and S. left with her. She decided she would need to leave the conference and asked if S. would go back to the room and get her notes, which she did.

There was not one professional in the room that challenged Prof Tyrer on his behaviour. We approached Prof Tyrer after the talk and gave him his very own ‘I Am A Beauty, Not A Beast’ badge that we had made up specially, in reference to the inflammatory title of his book. He seemed pleased and either didn’t understand the satire or wasn’t prepared to show it.

Later that year Prof Tyrer referenced us in an article:

There are some who feel so annoyed with the diagnosis that they have formed a group to abolish the term. They call themselves “Personality Disorder in the Bin”. I would argue this only perpetuates stigma, and we now need a new group “Personality Disorder in the Spotlight”. That is where it needs to be. 

We are glad we made an impression on him!

Finally, after Prof Tyrer’s presentation, we got the lift to go down to the big get-together at the end of the conference in the main hall. A young psychiatrist in the lift was talking about how great Prof Tyrer was and we challenged him given how completely inappropriate his behaviour had been. His response was, ‘Well, Prof Tyrer was upset’.

We arrived in the main hall and joined a group of mostly survivors and lived experience practioners. Still reeling from the events of Prof Tyrer’s presentation, we tried to strike up a conversation about what had just happened. This conversation quickly turned into one of the lived experience practioners asking about PD in the Bin, in a way that felt like an interrogation. In the course of this confrontation, one of us had to leave the room, in tears.

The overarching experience of the conference was hostility like this.

We made t-shirts and put them on specially for Prof Tyrer’s presentation!
A reference to Prof Tyrer’s comment ‘flagrantly misbehaving Borderline domains’ in an article about the re-classification of personality disorder
Prof Tyrer giving his presentation
The nurse’s notes taken during Prof Tyrer’s presentation
Prof Tyrer wearing our ‘I’m Not A Beast’ badge

Durham 2019

Back into the lion’s den. Our proposal to facilitate a lived-experience led discussion on iatrogenic harm caused by the diagnosis of BPD had been rejected, but we were determined to use our free service user delegate status at BIGSPD 2019 to ensure that critical voices were heard at the conference.

The conference had a number of lived experience led presentations. It opened with writer Clare Shaw’s keynote entitled ‘Language Matters: how words can harm and heal’ that included some of her poetry. We had hoped that given this opening theme, BIGSPD might have taken the opportunity to address Prof Tyrer’s language in 2018, but there was never any apology or acknowledgment of it.

We decided to join the fancy dinner on the first evening. Finding it difficult to follow the chat round the table due to all the background noise in a large dining room, P. decided to remove her hearing aids and popped them in a glass on the table. Only to leave them behind to be cleared away with the washing up when leaving early after one too many glasses of wine! Unfortunately this left P. a little disadvantaged for the rest of the conference not being able to hear properly, but it didn’t stop her from speaking out, and of course she was deaf to all the disgruntled mutterings when her interruptions were not always appreciated.

On day two, we attended a workshop called ‘Voicing The Unsayable: The Unspeakable Truths of ‘Personality Disorder’ Services’, facilitated by former-Emergence and KUF (Knowledge and Understanding Framework) trainers collaborating with occupational therapist Keir Harding. We had quite high hopes for this because on paper it looked like a workshop about giving survivors a voice and how that voice can be heard. However, the focus was more about lived experience practioners working in the ‘industry’ and how they felt like they couldn’t say what they meant and wished they could be more direct. Then the focus of the workshop turned to the question: When is it OK to ask somebody why they haven’t killed themselves yet? We couldn’t believe what we were hearing. This is the type of question you expect from the DWP, not lived experience practioners.

We of course understand their meaning behind this: using a strengths based approach to work out why someone has not died in order to identify ‘protective factors’ and ‘coping strategies’. However, the way it was framed and the focus on the lived experience practioners themselves was completely inappropriate. It did not acknowledge the iatrogenic trauma that many of us with a personality disorder label have experienced when we are asked this question in an accusatory way.

The next event we went to was a ‘conversation cafe’ which was asking for both lived experience and professional’s views on the BPD diagnosis, with the idea to come to a consensus. This did not acknowledge the discussion and work done the previous year on the ‘consensus statement’. It seemed like the same question was being posed over and over. I brought this issue up but was quickly shut down.

There was a growing sense that the only lived-experience voices that were welcomed at BIGSPD were those that weren’t challenging the personality disorder diagnosis and who had been co-opted into the fold to serve to legitimise the clinical and academic wisdom of the BIGSPD community and to protect them from the likes of us ‘angry’ ones.

At the end of the conference there was an awards ceremony where it seemed that the good compliant survivors were rewarded. P. needed to sit right at the front to try and hear what was going on, having lost her hearing aids. She was asked to move by a lived experience practioner who insisted she needed to sit with her friends.

It took us a long time to get over the BIGSPD 2019 conference. We sat on the train going home and could barely speak because we were so drained. 

We decided not to go back. The best form of activism as far as BIGSPD is concerned, is to not attend. If we were to return, it would be on the provision that we were allowed to swing from the chandeliers (BIGSPD love their chandeliers) shouting ‘misogyny’ and ‘victim blaming’ at the top of our voices.

The beginning of the workshop that ended with the debate on ‘When is it OK to ask somebody why they haven’t killed themselves yet?’
Slide from an unnamed presentation. We thought it summed up the harm of the personality disorder construct well.

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