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PD or Not PD? Notes on our partnership

Ops director Richard talks about our partnership with the Leeds PD Network, providing some clarity and addressing the conflict between our anti-PD and survivor-led ethos, and a service that has a label we disagree with in its very name. It’s a topic that can bring up a lot of difficult feelings and we want to make sure we are open about everything with you all. It’s a partnership that we’re proud of, and it’s still a label we disagree with.

Our email address (survivor.led@lslcs.org.uk) is open to you for any comments or questions or thoughts or anything else you want to say on this topic.


 

PD or not PD? That is the question…

At Leeds Survivor-Led Crisis Service (LSLCS), we offer a non-medical response to crisis, preferring to hear about a person’s individual feelings about whatever they’re going through, rather than any diagnosis they might have. We’re deeply respectful of people who find value in their diagnosis, but stand in opposition to psychiatric diagnosis generally. Why, then, are we in partnership with the Leeds Personality Disorder Managed Clinical Network (PDMCN), who have one of most vexed and contested diagnoses of all in their name? 

This is actually a really important question to ask, as many of the visitors and callers to our services have attracted the “personality disorder” (PD) label and find that it stigmatises and even harms them. Some very legitimately ask about our partnership with the PDMCN, worrying that we’re watering down our radical, survivor-led approach by colluding with “the enemy”. 

As someone with my own views about the PD label (spoiler alert: I’m not a fan) and who’s seen a great many visitors and callers to our services really struggle with being labelled in this way over the years, how can I also say (truthfully, because I am) that I’m really proud of our partnership work with the PDMCN? How does that work? 

The controversy about the PD label is well known. Many people with the label find it stigmatising, feeling that mental health professionals hear the label and think, “manipulative, attention-seeking, complex and challenging to work with”. It’s often felt that professionals just see the label, rather than the person underneath; and so fail to offer the compassion and openness that the person needs. Even worse, having the label can render a person untrustworthy and unreliable in the eyes of the criminal justice system, reducing the chances of survivors of abuse seeking and getting any form of justice. 

Critics of the label, alive to the above injustices and lack of appropriate support within the mental health system, add to the case by pointing out that there are better labels and models, should anyone feel the need to apply one. Complex Post-Traumatic Stress Disorder and insecure disorganised attachment, for example, offer ways of seeing people that allow for context; and help to explain current difficulties in the light of past trauma, adverse life experience and neglect of emotional needs in infancy and childhood (though it’s worth noting that, as valuable as these more nuanced labels and models are, we shouldn’t forget that, ultimately, we’re talking about people – every one of whom has their own individual story of how they came to be the way they are.)

Now that I’m up on my soapbox, I want to point out that a lot of this is due to oppressive power imbalances in society that disproportionately lead to (often) women being labelled and essentially re-victimised and re-traumatised by a system that fails to provide redress for their trauma and then fails to recognise their difficulties in a genuinely open and supportive way. (And while I’m here, every opportunity right now needs to be taken to say that Black Lives Matter – oppression takes many forms.)

In the interests of balance, it has to be said that that many people do find value in the PD label, feeling that it’s given them validation that they do have legitimate issues, issues that’ve perhaps gone unseen or haven’t been fully believed. In many cases, this has opened the door to effective interventions. Also, not everyone recognises their past experiences as traumatic – and pointing out to them that trauma may be the root cause of their difficulties can result in understandable resistance and the opening up of massive emotional pain. So, as much as I’d love to contribute to dismantling psychiatry and its (to me) oppressive power structures, I recognise that the situation is nuanced and complex. However, given that we do fall on the ‘anti-PD’ side of the fence at LSLCS, why work in partnership with a PD service? 

Historically, it’s always been known that LSLCS and the PDMCN have a lot in common in terms of “client group”. Many people who’re being care-coordinated by the PDMCN use our Dial House service, for example; and the PDMCN have always recognised that our survivor-led, non-medical approach can work better for this group of people than statutory crisis services (that lean more on a medical model) can. So, we’ve always worked together to try to get the best outcomes for people. Collaboration, rather than competition, seems the more sensible approach.

The foundation that this historical work has given, along with our strong track record of meaningful visitor and caller involvement, meant that LSLCS was in a strong position to deliver the PDMCN’s service-user involvement programme, as we now do. The two organisations have a cordial and constructive “relationship of equals”, collaborating well on honing and developing opportunities for involvement work. 

It’s also worth noting that, although the PDMCN are called a “PD” service, that’s largely to do with the fact that they’re commissioned that way. At a government and commissioning level, the model is still very “PD”-oriented. But at a service level, things are very different: the workers there have a very nuanced view of the label, with a deep understanding of how trauma and attachment issues can play a huge role in a person having issues that come to be called “PD”. You don’t actually have to have the PD label to access the service. And upcoming developments, around ways to work with young people, look likely to further reduce emphasis on the use of “PD” as a label. 

The system is changing. In Leeds we have a statutory mental health system that’s willing to listen to and work with the Third Sector. A large, nationally-recognised “PD” service is in partnership with a small, radical, survivor-led service. Surely this is progress. Working in partnership with the PDMCN gives us the opportunity to work together with a shared aim – improving outcomes for people with a PD label – as well as offering us the opportunity to share our philosophy within a statutory setting.  

I know that the partnership has caused concern and distress to some of our visitors and callers, so I have to say directly: we were set up by people with their own experience of oppression within the mental health system; and exist with the aim of properly, compassionately supporting you. You absolutely have the right to challenge us and to have your views heard and acted on. Whatever we do that impacts on you, tell us! The more that people who’ve been labelled with “PD” have a voice, the better. I hope this piece of writing helps to explain that our partnership work offers a way forward, rather than backwards.