A very warm elfin welcome to Mental Health Question Time

🌟 #MHQT 🌟

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We are live streaming for the next hour and talking about how we can transform research and care for people with complex emotional needs.

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This #MHQT event is brought to you by @UCLPsychiatry @MentalHealthPRU @TheLancetPsych and little old me (André Tomlin).

Our chair this evening is @sianoram and our panel includes @sanishawynter @tamar_whyte @OliverDale10  @dynamicprince82
This #MHQT coincides with completion of a programme of NIHR Mental Health Policy Research Unit @MentalHealthPRU work on complex emotional needs, and is delivered within International Borderline Personality Disorder Awareness month #BPDAwarenessMonth
As always you can tweet your questions and comments to #MHQT

We know that these conversations can be hard for people, so please be kind and thoughtful, as well as challenging 😊

Here's some background to the conversation...
The new dawn promised 20 years ago by the national policy publication Personality disorder: No longer a diagnosis of exclusion has failed to materialise #MHQT
http://personalitydisorder.org.uk/wp-content/uploads/2015/04/PD-No-longer-a-diagnosis-of-exclusion.pdf
Individuals with complex emotional needs that may result in a “personality disorder” diagnosis, continue to report stigma within mental health services and struggle to get care that is accessible, holistic, and effective #MHQT
Continuity of care and strong therapeutic alliances are similarly lacking. Complex emotional needs research, meanwhile, lags behind the rest of the mental health field #MHQT
Research is both underdeveloped and underfunded; where it does exist, there are concerns that the questions that matter to service users, clinicians, and policy makers are not being addressed #MHQT
How might care and research be radically re-thought to ensure service users receive the right support?

Our expert panel this evening will discuss how care can be transformed for people with complex emotional needs, and what research is needed to drive this change #MHQT
At #MHQT @soniajohnson is introducing the topic by talking about the Complex Emotional Needs Project that @MentalHealthPRU presented in detail last week at the #ComplexEmotionalNeeds webinar
Our chair @sianoram is now introducing Dr Kylee Trevillion from @MentalHealthPRU who led the Complex Emotional Needs Project #MHQT
Kylee Trevillion is a Lecturer at @KingsIoPPN and a mixed-methods researcher. She led a qualitative study @MentalHealthPRU of the experiences and views of service users with complex emotional needs in accessing community support. #MHQT
. @sianoram asks Kylee Trevillion "What should researchers focus on to support real improvements in care for people with complex emotional needs?" #MHQT
We need to establish a research base that evidences best practice for care, says Kylee Trevillion #MHQT This needs to be holistic and not just focus on psychological therapies
We need to adopt coproduction approaches to answer key gaps in the research, says Kylee Trevillion #MHQT
We need to address stigmatising views towards people with a diagnosis of personality disorders, says Kylee Trevillion #MHQT It's not just due to a lack of knowledge. We need research that explores where this stigma comes from and how we can best challenge these views.
Our chair @sianoram is now introducing Tamar Jeynes @tamar_whyte who is a lived experience researcher on the @MentalHealthPRU Complex Emotional Needs project, a lived experience practitioner and expert by experience #MHQT
Like a lot of people who work from an experiential lens, @tamar_whyte wears many hats. Tamar is also Founder and Facilitator of Mad Studies Birmingham, and has spent 10 years working with NHS developing services for people with complex emotional needs. #MHQT
. @sianoram asks @tamar_whyte “How can co-production contribute to doing research that helps transform care for people with complex emotional needs?” #MHQT
Co-production at its core is about power sharing, and sharing of decision making. This runs from individual care right through to decisions on how services are designed.
@tamar_whyte #MHQT
This isn’t something that has been kindly given to service users, there is a long history of protest and activism with roots in the 60s to what we see today.
@tamar_whyte #MHQT
Services are historically designed by looking at an evidence base of what has happened before, evaluated, researched, peer reviewed and published in prominent journals.
@tamar_whyte #MHQT
Sadly, mad knowledge has not been recorded this way and so our work is routinely overlooked.
@tamar_whyte #MHQT
SU research is currently still a form of protest in its most transformative sense. We see this through the recent response by SU activists responding to highly controversial evaluation SIM/HIT intervention.
@tamar_whyte #MHQT
SIM/HIT is targeted at people experiencing high levels of distress who frequently act on suicidal impulses. It includes the use of police services and was seen as punitive due to the way it was implemented, with criticism that it criminalised mental distress. @tamar_whyte #MHQT
Many who are researchers or who have research skills have responded to the gaps in research method and reviewed the evaluation together as a collective, and created a campaign to prevent its national rollout.
@tamar_whyte #MHQT
Even the best intended evidence based interventions that are co-produced and implemented from the top down don’t translate to services.
@tamar_whyte #MHQT
The recent attempt to employ LXPs at senior levels in NHS trusts in England was met with varying degrees of success, with some trusts turning down funding rather than commit to doing so long term.
@tamar_whyte #MHQT
Research is yet again a powerful tool for protest, and right now there are plans by LXPs to use FOI request to collate data relating to the extent of this issue.
@tamar_whyte #MHQT
We need to look at the reasons that Trusts give as to why they do not want or feel able to begin to share power and decision making with the people they deliver services to.
@tamar_whyte #MHQT
Co-produced research can be a powerful tool in improving services - we just have to learn to share.
@tamar_whyte #MHQT
Our chair @sianoram is now introducing Sharon Prince @dynamicprince82 Consultant Clinical and Forensic Psychologist, Leeds and Yorkshire Partnership NHS Foundation Trust  #MHQT
Sharon Prince @dynamicprince82 has co-edited a book which tries to move forward the debate about how services could work more effectively with individuals described as having ‘personality disorder’.  #MHQT
@dynamicprince82 is "passionate about psychologically informed mental health care and how both psychological and social models can be employed to improve service user, carer and staff experiences." #MHQT
. @sianoram asks @dynamicprince82 “How could services change to offer treatment that is accessible and effective for a wider range of people, and what research would be useful to support this?” #MHQT
Services need to have structures that support staff and enable staff to remain validating and compassionate, says @dynamicprince82 #MHQT
Treatment needs to be much broader and we need to think about individuals in their social context, says @dynamicprince82 #MHQT This echoes what Kylee was saying earlier.
The challenge is how to research this potentially complex system of care that involves multiple agencies and interventions, says @dynamicprince82 #MHQT This is going to be VERY challenging. Sharon wants cross disciplinary working to solve these problems
Our chair @sianoram is now introducing Shirley McNicholas, Women's Lead @CI_NHS and the Manager & Founder of the Drayton Park Women's Crisis House #MHQT https://www.candi.nhs.uk/services/drayton-park-womens-crisis-house-and-resource-centre
Shirley has worked in mental health services for over 30 years and founded the Drayton Park Women’s model alongside women with lived experience of using services #MHQT
. @sianoram asks Shirley McNicholas "How can a trauma focus change care for people with complex emotional needs, and can research help with that?" #MHQT
"I developed a trauma informed crisis house for women, as I knew from my experience that trauma was clearly at the root of most of the ‘ disorders’ women presented with." Shirley McNicholas #MHQT
"A large proportion of the women in crisis have the diagnosis of borderline personality disorder. Often feeling very blamed and shamed by this diagnosis even though some of the services provided to this group (MBT, group & individual) were helpful." Shirley McNicholas #MHQT
"Women particularly are disempowered by the BPD diagnosis. These disorder labels can lead to  justifiable anger considering what has happened to them. These labels are a political way to control women." Shirley McNicholas #MHQT
"For men this might be different. Men who end up in the criminal justice system may be understood, helped by this diagnosis and empowered" Shirley McNicholas #MHQT
"Further research into the signs and symptoms of trauma and that of personality disorder would help to validate these experiences and create service provision that speaks to the trauma" Shirley McNicholas #MHQT
"MBT, psychoeducation, and help in managing emotions is helpful, but we also need a re-casting and understanding of the broader issues." Shirley McNicholas #MHQT
"Underlying trauma informed approaches are vital: ‘what has happened to a person and not what is wrong with them’" Shirley McNicholas #MHQT
Our chair @sianoram is now introducing Sanisha Wynter @sanishawynter who is an Expert by Experience and Mental Health Advocate. Sanisha identifies as a Black bi woman who lives and thrives with borderline personality disorder and mixed anxiety and depressive disorder #MHQT
. @sanishawynter is a mental health advocate and aims to support others by sharing her lived experience of her mental health conditions and her recovery journey #MHQT
Sanisha is committed to raising awareness of barriers to mental health access for people of colour. She is a Diversity and Inclusion Consultant and aims to further inclusion and advocate for marginalised people in the workplace and communities #MHQT
. @sianoram asks @sanishawynter “How do you think stigma holds back quality of care, and what could be done about it?” #MHQT 
"The diagnosis and stigma of BPD can affect access to services, treatment and perception" says @sanishawynter #MHQT
"Doctors can reinforce stigma by believing stereotypes, not listening to patients or taking a person centred approach and being dismissive which impacts treatment" says @sanishawynter #MHQT
"Intersectionality also matters. Multiple marginalised identities can also impact trust and engagement, there should be more effort to engage diverse communities and be intentional with inclusion from the outset." says @sanishawynter #MHQT
"The strong black woman narrative that is placed on people can kill" Big thank you to @SanishaWynter for speaking so openly and honestly at #MHQT Really powerful words
Our chair @sianoram is now introducing Lars Mehlum Professor of Psychiatry, Director of National Institute for Suicide Research and Prevention, University of Oslo #MHQT
. @sianoram asks Lars Mehlum “How could research focusing on children and young people help improve outcomes for complex emotional needs?” #MHQT
Less than a decade ago there were no proven treatments for young people with complex emotional needs, says Lars Mehlum at #MHQT
Now there are ways we can help young people, says Lars Mehlum at #MHQT (he mentions DBT and says there are other helpful approaches)

But we need focused interventions that can be delivered in the short-term if possible, and we need to understand why and how treatments work
Suicide prevention in young people requires more effective interventions for complex emotional needs, says Lars Mehlum at #MHQT
Our chair @sianoram is now introducing Dr Oliver Dale @OliverDale10 who is a Consultant Psychiatrist and Jungian Analyst. He works at @CasselHospTrust in London & is co-President of @BIG_SPD #MHQT
As interim clinical lead for Community and Recovery Services of Hammersmith & Fulham @OliverDale10 is working with colleagues to deliver the Community Mental Health Framework as a part of the NHS England Long Term plan #MHQT
As an executive member of the General Adult Faculty ( @RCPsych) @OliverDale10 co-edited the RCPsych Position Statement on Services for People Diagnosable with Personality Disorder, which was blogged for us by @KeirWales here: https://elfi.sh/2GH0QNO  #MHQT
During his time as clinical lead for the Cassel Hospital @OliverDale10 led the Managed Clinical Network for Personality Disorder to develop a model of co-produced, multi modal and multidisciplinary psychological education, training and consultation #MHQT
. @sianoram asks @OliverDale10 “What are the most important research and clinical priorities for complex emotional needs from now" #MHQT 
"We have a classification system within which there is disillusionment. This is as much within the psychiatric profession as outside of it. ICD was flawed from start, but it has developed ever increasing categorical carbuncles" @OliverDale10 on "personality disorders" at #MHQT
"Assurance and evidence requires a classification system and whilst I think the power threat meaning framework is a very useful approach to formulation, in my book it is not a structure which will be able to provide epidemiological or interventional evidence" @OliverDale10 #MHQT
"Although clinically I think ICD 11 is attempting to do something more scientifically useful, it does not appear to have grasped the nettle. Some will feel disillusionment with what I say next, but I think we need to seriously be thinking about ICD 12 now" @OliverDale10
"I'm eagerly awaiting the results of a international computational psychiatry project which has conducted a huge investigation using a mixture of fMRI and computational approaches to exploring behaviour and thinking through a computer game" @OliverDale10 #MHQT
"This along with things like the Clinical Record Interrogation Systems and wearable technology are going to change things" @OliverDale10 #MHQT
"Computer algorithms are becoming remarkably adapt at spotting patterns – say sleep disturbance in bipolar on your mobile phone, or early indicators of pregnancy on Facebook" @OliverDale10 #MHQT
"I believe such methods will begin to change the manner in which we gather evidence and I am hoping will help us become much better at identifying Prognostic indicators or creating Tailored interventions" @OliverDale10 #MHQT
"Mike Crawford has done a project on Structured Psychological Support – such work needs replicating, but this perhaps is similar in other respects to SCM, PICM, Good Psychiatric Practice etc" @OliverDale10 #MHQT
"Other short term psychological structured interventions also need evaluating – Such as psyche Ed – (LATER), along with proper evaluation of modified 6 months and short versions of DBT skills groups" @OliverDale10 #MHQT
"We need to draw a distinction between service & intervention. This is more complex than it sounds & it touches on other perennial arguments such as common Factor theory vs efficacy of a structured intervention, long term care, specialist vs mainstreaming etc" @OliverDale10 #MHQT
"But more or less what should a service framework look like and what do staff need in order to provide good quality care?" @OliverDale10 #MHQT
That's all we have time for! Thanks to everyone who contributed to this Mental Health Question Time event on complex emotional needs. #MHQT @MentalHealthPRU @sianoram @sanishawynter @tamar_whyte @OliverDale10  @dynamicprince82 @UCLPsychiatry @TheLancetPsych
The video is now on YouTube, so you can watch again and tweet your thoughts to #MHQT
Ending exclusion: how can we transform research and care for people with complex emotional needs? ← We look forward to hearing YOUR thoughts.
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