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On 22nd January 2019 we hosted a research planning workshop on community 'personality disorder' services. The aim of the workshop was to inform a future project to review typologies of community 'personality disorder' services, and explore stakeholder perspectives on potential models of care and economic modelling of the impact of different models. This project, being undertaken by the MH PRU, will help to inform NHS England and DHSC policy.
The event included presentations and discussions with people who have lived experience, healthcare professionals, researchers, policy makers, campaigners and representatives of relevant third sector organisations. The agenda for the day can be found here.
Several of the talks were live streamed and you can watch these here [https://www.youtube.com/watch?v=tO-MDRBI2OE]. The speakers slides are available for Sue Sibbald, Shirley McNicholas, Jay Watts, Mike Crawford, Oliver Dale and Rachel Rowan Olive. The transcript of Rachel’s talk can also be found here. You can also read and contribute to the discussion on twitter (#MentalHealthPRU).
Blog posts from our Workshop in January
Introduction
Is “personality disorder” too problematic a term to be the basis of research and policy? What alternative terms are there? What do people often labelled as having a “personality disorder” need from services and what models of community services are currently in use? On 22nd January 2019 the NIHR Mental Health Policy Research Unit hosted a research-planning workshop to discuss these questions.
The workshop was what we hope will be the start of a wider discussion on these questions that should inform our research project. We encourage you to share your views and responses with us, via our twitter page @MentalHealthPRU.
In this blog series we will summarise the speaker presentations and group discussions that took place on the day, and twitter conversations that took place before, during, and after the workshop. The blog is in three parts, written by three members of the PRU team – Kylee, Vicky, and Emma. Kylee summarises the key take-home messages from the speaker presentations. Vicky describes the main points from the group discussions, and Emma reports on some of the discussions taking place on Twitter.
Blog post by Stephen Jeffreys, member of MHPRU Lived Experience Working Group (writing in a personal capacity)
My first acquaintance with the diagnosis coincided with events discussing the 2003 document, Personality Disorder: Not a diagnosis of Exclusion. Although progress has been made to raise awareness and improve services, including collaborative work with survivors, many are still not offered support they need [1] and the negative attitudes to people given the diagnosis are still too prevalent [2]. I write this blog as someone with experience of a diagnosis of personality disorder and as a survivor researcher involved with this study. For me, two key aspects of survivor research are the value of experiential knowledge [3] and doing research from a commitment to social justice [4]. Here I’m highlighting some of the contributions to the workshop that resonated with this standpoint.
At the workshop, many participants with lived experience voiced fundamental criticism of the ‘personality disorder’ diagnosis, particularly in relation to ‘borderline personality disorder’. Numerous contributions emphasised the inherently pejorative nature of the diagnosis, in locating distress and supposedly problematic behaviour in a defective personality rather than an understandable reaction to life events and circumstance. Jay Watts, presenting, referred to survivor accounts of ‘testimonial injustice’ where calls for help are dismissed as manipulative or attention seeking. [5] Participants spoke passionately about how they had felt invalidated when emotions stemming from abuse and traumatic experiences were pathologized or dismissed as attention seeking. Further survivor accounts and opinions can be found via twitter feeds for PD in the Bin and Survivors Against PD and #traumanotPD. [6]
Social perspectives were evident in the alternative names floated in the workshop which focused on personal experiences to which mental distress was linked, particularly trauma. However, concerns over varying views on what counts as trauma and who decides were noted with some concern that a narrow definition might restrict access to services and not capture the full range of experience of those with personality order diagnoses. Furthermore, as Jay Watts’ presentation explained, trauma impacting on identity, emotions and interpersonal relationships can be societal, arising from heteronormativity, misogyny, and racism.5
The need to critically examine presumptions and aims in diagnosis and services was also highlighted in the workshop. Adopting a feminist approach, Rachel Rowan Olive pointed out [7] that 75% of those with a borderline personality diagnosis are women and asked whether this should be viewed in terms of social control and a consequence of stereotyping and pathologizing of the impact of trauma.[8]
Whilst the workshop understandably focused on the ‘borderline personality disorder’ diagnosis, I hope that the research will be able to incorporate consideration of community services and support for those of us who have been given other ‘personality disorder’ diagnoses and those perhaps lost in the spaces between the diagnostic categories and clusters [9]. The NICE guidelines for personality disorder and other policy documents seem to focus on the borderline and antisocial diagnoses, raising a question as to whether this may still remain a diagnosis of exclusion for others.
[1] For a useful review and history, see Sacha Evans, Faisil Sethi, Oliver Dale et al (2017) ‘Personality disorder service provision: a review of the recent literature’, Mental Health Review Journal, 22(2), pp.65-82
[2] Dimitrios Chartonas, Michalis Kyratsous, Sarah Dracass, et al (2017) ‘Personality disorder: still the patients psychiatrists dislike?’, BJPsych Bulletin, 41, pp.12-17.
[3] Diana Rose, Sarah Carr& Peter Beresford (2018): ‘‘Widening cross-disciplinary research for mental health’: what is missing from the Research Councils UK mental health agenda?’, Disability & Society. Available at https://www.tandfonline.com/doi/full/10.1080/09687599.2018.1423907
[4] Emma Ormerod et al (2018) Survivor Researcher Network Manifesto: mental health knowledge built by service users and survivors, London, NSUN. Available at https://www.nsun.org.uk/Pages/FAQs/Category/our-sub-network
[5] Jay Watts (2019) talking at MHPRU workshop. 24 January 2019, Available at https://www.youtube.com/watch?v=tO-MDRBI2OE&feature=share, 4:48 – 27:02. slides available here
[6] https://twitter.com/PDdxInTheBin; https://twitter.com/SurvivorsNotPD; traumanotPD
[7] Rachel Rowan Olive (2019) talking at the MHPRU workshop. Slides available here
[8] For other examples, see also Clare Shaw& Gillian Proctor (2005) ‘Women at the Margins: A Critique of the Diagnosis of Borderline Personality Disorder’, Feminism & Psychology, 15(4) 483-490. DOI: 10.1177/0959-353505057620. And Åsa Jansson (2018) ‘Teaching ‘small and helpless’ women how to live: Dialectical Behaviour Therapy in Sweden, ca 1995–2005’, History of the Human Sciences, Available at https://doi.org/10.1177%2F0952695118773936
[9] For a qualitative study of experience of avoidant personality disorder, see Kristine D. Sørenson, Marit Råbu et al (2018) J. Clin Psychol, DOI: 10.1002/jclp.22740
Speaker Presentations – Key Messages
Blog post by Kylee Trevillion
After I joined the @MentalHealthPRU team in October 2018, one of my first tasks was to organise this research planning workshop. The timescale was quite tight and I was initially unsure whether the speakers and invitees would be available. However, I immediately realised the passion, drive and commitment that people have to this field, so it was no surprise to find that people coordinated their schedules in order to ensure they could attend.
The workshop was a small event, held at a community café in south London. The event was facilitated by the independent Chair Tina Coldham and had representation from a cross-section of people with lived experiences, activists, statutory and third-sector service providers, policy makers, commissioners and academics. We worked with @Mental_Elf to take the event “beyond the room” through podcast interviews, live-streaming, and live-tweeting. I will summarise below what I understood to be the key take-home messages from the speaker presentations, but you can also view many of the filmed talks here.
Talk One
Sonia Johnson, Director of the NIHR Mental Health Policy Research Unit, started the day by introducing the workshop aim: to inform the planning of the NIHR Mental Health Policy Research Unit’s research project on community “personality disorder” services. Sonia explained that the research will seek to generate evidence about how community mental health services can best support people who have been diagnosed with a “personality disorder”. The key aims of the project are to:
· Identify a range of approaches and models of community mental health treatments
· Identify sources of innovative and good practice
· Explore the views of people with lived experiences, carers and people delivering services to identify key components for service provision
Watch Sonia’s talk here (starts from 0:00 minutes in to the video)
Talk Two
Viral Kantaria, Senior Programme Manager for Adult Mental Health at NHS England, summarised the policy context to this research project, making reference to the following policies:
· “Personality Disorder: No longer a diagnosis of exclusion” (2003)
· “Five Year Forward View for Mental Health” (2016)
· “National Confidential Inquiry into Suicide and Homicide by People with Mental Illness” (2018)
Viral also discussed some of the key recommendations from the 2019 NHS Long Term Plan, including “new and integrated models of primary and community mental health care” which includes maintaining and developing new services for people with complex mental health difficulties associated with a diagnosis of ‘personality disorder’ and ensuring personalised and trauma-informed care is provided. Viral commented that through the transformation of core community services, we need to ensure these services are equipped with the right staffing, knowledge, understanding and skills to be inclusive and provide quality, evidence-based interventions for people with a diagnosis of ‘personality disorder’, ‘complex trauma’ or difficulties associated with these diagnoses. We also need to ensure there are co-designed and -produced dedicated community services for those with more complex needs. People with lived experience need to be at the heart of efforts to design and implement these ambitions. NHS England will use the MH PRU research to inform national policy and investment to support improved community services.
Talk three
Jay Watts, clinical psychologist and activist, gave a talk about the origins of the term “personality disorder”, which come from the school of psychoanalysis. Jay argued that these terminologies are inappropriate and out of date, and that mental health services need to deliver models of care that are individualised, trauma-informed and which recognise the bias of the diagnosis of “personality disorder” towards women and LGBTQ+ population.
Watch Jay’s talk here (starts from 5:44 minutes in to the video)
Talk four
Mike Crawford, Professor of Mental Health Research at Imperial College London, explained that over half of people experiencing these difficulties are misdiagnosed and do not receive a diagnosis of “personality disorder”; as a consequence many do not receive appropriate and specialist care. Mike argued that short-term treatments for people who have been diagnosed with a “personality disorder” may be appropriate and effective, and called for a stepped-care approach and for services to provide individualised-care. Mike reflected that there are currently a limited number of specialist high-intensity services and called for better economic evidence regarding psychological treatments for people who have been diagnosed with a “personality disorder”.
Watch Mike’s talk here (starts from 27:43 minutes in to video)
Talk five
Rachel Rowan Olive, illustrator/Mental Health PRU Lived Experience Working Group member, explained how current research practices and guidelines inadvertently bias research studies in this area. This can have huge implications on practice. Rachel argued that the construct of “personality disorder” pathologizes the life experiences of many women (e.g. their experiences of abuse or their transgressing of gender norms) and is misogynistic. Rachel called for services to acknowledge how social and political contexts impact on people’s mental health.
See Rachel’s slides and presentation speech here
Talk six
Oliver Dale, Consultant Psychiatrist, Hammersmith & Fulham Personality Disorder Service, described surveys his group have undertaken to examine the provision of specialist “personality disorder” services across the country. Oliver explained that their work in West London NHS Trust showed that over 1,000 people had a diagnosis of “personality disorder”. Around 30% of people with the diagnosis who were engaged with the Trust were frequently entering in and exiting inpatient services but were not discharged with any support from community-based services. Oliver’s presentation highlighted the serious lack of specialist service provision for people who have been diagnosed with a “personality disorder”. Oliver called for research which utilises clinical informatics to identify where in the care pathway people are not being adequately served and to target interventions accordingly.
Watch Oliver’s talk here (starts from 47:34 minutes in to video) and listen to his post-presentation interview with the Mental Elf from the day here
Talk seven
Sue Sibbald, Peer Specialist Trainer and Campaigner, gave a presentation which explored the lived experience of having a diagnosis of “personality disorder” as well as the recommendations from the Consensus statement. Sue commented that some people find the term “personality disorder” helpful but others do not. Sue reflected that if any changes are made to the terms used to describe this construct then these must be done alongside a shift-change in people’s perceptions and views.
Sue also discussed issues relating to parenting in the context of this diagnosis and the need to support people across the life-course. Sue spoke of the need to identify what people want from services, rather than just second-guessing their wishes. She cited examples of good practice, including the stepped-care models which adopt a strengths-based approach. Sue discussed the value of services working with families in a holistic way and ensuring they have shared ownership and true collaboration with people with lived experiences.
Watch Sue’s talk here (starts from 1:02:42 minutes in to video)
Talk eight
Sarah Markham, Visiting Researcher of Biostatistics & Health Informatics, Institute of Psychiatry, Psychology & Neuroscience, explained that when designing healthcare services, it is imperative to ask people what they need. Sarah discussed a methodology called design-thinking, which can be used to inform the development of community-based services. Sarah explained that this methodology is co-produced and adopts a strengths-based and solution-focused approach.
Watch Sarah’s talk here (starts from 1:25:29 minutes in to video)
Talk nine
Shirley McNicholas, Women’s lead for Camden& Islington NHS Foundation Trust, gave a presentation focused on the care model of Drayton Park women’s crisis house. Drayton Park’s service model adopts a trauma-informed approach that seeks to validate women’s experiences, gives women choices, and embeds a culture that acknowledges the social and political contexts of women’s lives. Shirley explained that the service focuses on what has happened to women to bring them there rather than what is ‘wrong’ with them. Shirley spoke of the importance of ensuring consistency of care and trustworthiness, and ensuring the service is embedded closely with the wider community organisations. Shirley reflected on the unique nature of the Drayton Park women’s crisis house model, following the closure over several years of similar services in other areas.
Watch Shirley’s talk here (starts from 1:41:30 minutes in to video) and her interview with the Mental Elf here
Talk ten
Finally, Paul McCrone, Co-Director of the Mental Health Policy Research Unit and professor of health economics, outlined the economic evidence base in relation to community health services. Paul reflected that public resources are scarce, including in relation to healthcare services. Paul explained that there are several useful economic methodological approaches that can be undertaken to evaluate health services, including collecting economic data within a clinical trial, examining routinely collected clinical data or observational data, and through the development of simulation models
Watch Paul’s talk here (starts from 2:06:36 minutes in to video)
Now you’ve read the speaker summaries, what are your thoughts and take-home messages? Please share them with us on our twitter page @MentalHealthPRU
Blog post by Emma Molyneaux
We were very lucky to have André Tomlin working his #BeyondTheRoom magic at the workshop. Thanks to everyone who engaged in the discussions around the day, we’ve learnt a lot from reading your tweets and links. I’d recommend taking a look back through #MentalHealthPRU on twitter if you want to read through people’s comments in detail, but we also wanted to pull out some of the things which really made us think. All the tweets included here are quoted with permission.
First, due to the resources available to us, we decided to organise this as a relatively small and structured workshop rather than as a larger conference-style event. The venue had capacity for 45 people and in order to ensure that we would have a range of perspectives for the discussions (e.g. people with lived experience, healthcare professionals, representatives of third sector and policy organisations) we started by inviting a number of people from each of these groups. Around a week before the event we opened up the remaining places on a first-come first-served basis. A number of people tweeted to say that this was exclusionary and prevented us from hearing from a broader range of people with important contributions to make. This was particularly problematic as “personality disorders” are still often a diagnosis of exclusion, whatever the 2003 guidance promised. These criticisms should not reflect on the people with lived experience who spoke at or attended the event. But we’d like to apologise, to acknowledge that these criticisms are important, and to say that we are taking these on board. We are going to run a larger open meeting later on in this project and will be working to ensure that this is an inclusive event. We are glad for your thoughts on how we can best achieve this.
The diagnostic label - On the day, a lot of discussion on twitter related to the diagnostic label of “personality disorder”. People had a variety of views, but almost everyone agreed that the diagnosis is derogatory, stigmatising and unhelpful. Many people also argued that the diagnosis doesn’t reflect a meaningful and coherent construct - Jay’s [from 5:40] and Rachel’spresentations also have more on this. As has been previously identified (e.g. in the Consensus Statement), it is difficult to agree on alternative terminology – but many suggestions were made. Some people at the workshop suggested that dropping the reference to “disorder” would be helpful, but the overwhelming response on twitter (and among other attendees at the workshop) was that the focus on “personality” is problematic regardless.
I still find issue with the phrase 'personality problems' in the first place... Wouldn't things like 'relationship problems' or 'emotion regulation difficulties' be more descriptive and less stigmatising...? #MentalHealthPRU— Holly Dale (@MentalAcademic) January 22, 2019
It's assumed that for all people with a PD diagnosis there's a range of symptoms/ problems that are covered by the term, however misplaced. But, does that overlook so many people without those problems who receive this diagnosis as a reprisal or snap judgement? #MentalHealthPRU https://t.co/9MQmZxSNNW— Madelen (@m4delen) January 22, 2019
Why do you need to label someone to help them? Other services eg debt counselling & counselling in general, offer the help the person needs at that particular time without labelling them— Anne Cooke (@AnneCooke14) January 22, 2019
Several people also highlighted the importance of thinking about how the “personality disorder” diagnosis is actually used in practice. People described how the diagnosis can be given without any proper assessment and how self-harm can be conflated with “personality disorder”. Once given, the diagnostic label sticks and has substantial impact on the quality of people’s care – and access to care itself. People who try to reject the diagnosis are often told they lack insight or awareness and may be prevented from accessing certain treatments.
Complex PTSD - Complex PTSD puts the focus on the trauma that many people have experienced, rather than making judgements about their personality, and is increasingly viewed as a more useful diagnosis for many people labelled as having “BPD” (more in Jay’s talk [from 5:40]). However, some people on Twitter argued against diagnostic labels entirely (see this blogtoo). Another potential issue with the complex PTSD diagnosis, also raised in Rachel’s talk, is that currently accepted definitions of trauma may be too narrow to reflect the variety of adverse experiences that people have had.
I still find the entire diagnosis problematic as most of these "symptoms" are completely part of normal reaction and especially so if any trauma has been involved.— averyenglishgypsy (@bubblecat) January 22, 2019
Trauma informed care – One of the main topics around service recommendations was trauma informed care. Whilst thought to be a good idea in principle, there were seen to be substantial issues with the implementation of this in practice. Sarah Carr also wrote an interesting blogabout this on the Mental Elf last year.
I don’t think Trauma Informed Care exists at all within NHS Mental Health Services. Not when the current system takes power & control away from the service user. Especially those who are trauma survivors. In order for care to be truly trauma informed, huge changes need to happen.— Anonymous. (@MyNewMummyLife) January 22, 2019
Joined-up thinking - People also highlighted the need for more joined-up thinking between NHS services and with other agencies. In particular, it was seen to be crucial to listen to those with lived experience of using these services – who are often best placed to identify areas of good and poor practice. Finally, several people on twitter and at the workshop highlighted the need for better funding for user-led organisations – as investment in these organisations is crucial for meaningful involvement and co-production. Thanks again to everyone who was involved in the discussions. This is just a taster of some of the great ideas, arguments and insights that people shared, which we will be using to guide the project going forward. Do take a look at #MentalHealthPRU to see all the tweets.
A national Knowledge & Understanding Framework (KUF) training programme was once delivered by a user-led organisation (Emergence). But now closed due to lack of funding. Must have investment in ULO infrastructure for co-production & peer support #MentalHealthPRU @NSUNnews— Dr Carr regrets she’s unable (@SchrebersSister) January 22, 2019