Tag: research

Filming in London

Over the past year I’ve begun a few lived experience roles with charities and research networks, using my voice to help improve mental health services in the UK. 

As you know, I’m particularly passionate about raising awareness of the trauma-informed care we so desperately need and deserve.

Last week I had meetings online, including with the Lived Experience Advisory Group at the Samaritans, helping plan their future strategy. 

It was also a big week, because I went to London to do some filming! ?

Of course, I was really excited about this opportunity and really anxious. I’ve been learning, and embracing, that it’s OK to be both.

I’m working with researchers at City, University of London on a 5-year project – the ASsuRED study. Researchers are developing and testing new interventions to better help people who present at hospital Emergency Departments in suicidal or mental health crisis. 

Well, I’ve been there, done that. I have had many awful experiences in this exact situation, which caused me immense further harm and retraumatisation.

I’m now absolutely passionate about changing these mental health and emergency care systems for the better. It’s sad there’s a problem in the first place, but great that our voices are finally being listened to.

The bright lights & green screen of Hollywood… not quite, but even better 🙂

It’s even more poignant for me because when I was 15, I had a book published. ‘How Teenagers Think’ was published in 2007 by White Ladder Press. I had a speaking agent, and spoke at many conferences around the UK, Europe and in the media. I stopped because I was struggling massively with my own trauma, but didn’t realise it, despite seeking all kinds of help from every single mental health professional you could imagine. 

And now it has come full circle, with the opportunity for my voice to be heard again, this time for something even more meaningful. ✨ 

Introducing emotional flashbacks and how my flashcards are helpful

It’s also important to point out this is a living not lived experience for me. My life has many barriers I am still trying to overcome on a daily basis, which makes this work extra hard. But it also makes me even more determined to keep going.

With thanks to the support of Sally, the researcher, and Jane, the videographer, I felt well supported in preparation for, during and also after the filming. This made such a big difference to my experience, especially from an emotional perspective. It’s really important that projects involving people with lived experience take care in this way.

Jane applying the magic dust

If you are keen to use your voice in a similar way, I recommend searching online for lived experience mental health roles. If you’re in the UK, the NSUN (National Survivor User Network) email newsletter has lots of these opportunities. 

If you are a researcher, charity or other organisation keen to embed lived experience in your work, please contact me to see how I could help you implement & benefit from this. You can read more about the work I do around this on the Lived Experience page on this website.

All of this is keeping that fire burning inside me. ? I’m more convinced than ever that we need better trauma informed care and healing spaces, and now is the time for it. 

It’d be awesome to hear what you’re working on, and if we can help each other create the change we so deserve. ??✨

Flickering Fire is Nature’s EMDR

Have you heard of EMDR? You probably have, because it’s the latest ‘revolutionary’ therapy in the field of mental health.

EMDR (Eye Movement Desensitisation Reprocessing) is not a talk therapy. Instead, the basic premise is that you move your eyes from side to side, whilst thinking of a troubling event or the feelings related to it. You can do this in person with a trained therapist, you can do it online with a therapist’s support, or even by yourself.

There is a proven link between our eyes, and their connection to how the brain stores memories. We already know this from Rapid Eye Movement (REM) sleep, the dream stage.

Growing evidence is showing us that EMDR helps the brain process traumatic memories. This evidence means it is quickly becoming the go-to therapy for trauma.

But do you know what is truly revolutionary?

Realising that EMDR is nothing new at all. Psychiatry cannot take credit for it. We don’t need professionals for this, or another acronym. 

I’m not saying that it doesn’t work. It clearly does.

But why? Where did it come from? Why are we only just discovering it?

Recently, I sat in the dark, a candle lit in front of me. I’ve been having a tough time again lately – the trauma healing journey is not a linear one by any means – and a very negative thought came to my mind. 

But as I kept my focus on the candle, flame flickering from side to side, the negative thought disappeared. I tried to hold onto it, but it was gone.

I realised that my eyes were following the flickering flame of the candle, just as they would an LED light in a therapist’s office, or a pixelated ball bouncing across a computer screen.

Fire. Nature’s version of EMDR.

Or more to the point, EMDR is psychiatry’s version of nature’s flickering flame. 

Humans have always experienced trauma. But we used to live in tribes, villages, communities. We used to come together every day around the fire to share stories, cook, socialise and dream. 

Trauma is culturally mediated. In the west, we are told by our family & friends to deal with it alone, go to see “professionals”, pay lots of money for 50-minute sessions, week after week. 

What if nature has all the answers already? And all we really need is to stand by a fire, alongside our peers, supported in community? No pixels required. 

Our disconnection from ourselves, each other and nature is a key part of trauma. And it’s completely left out of modern mental health care. Coupled together, it’s why so many of us are struggling today, and failing to find the help we need.

The need for non-clinical trauma-informed crisis spaces and healing communities is clear.

It’s time to build it.

Let’s start with the fire. ??✨

Pilot Workshop – Dental & Mental Health in Young People

This afternoon I took part in a pilot workshop for a research project at Queen Mary University of London’s Institute of Dentistry. It seeks to explore needs and set research priorities for dental health services, focusing on young adults with depression.

I discovered the opportunity through TRIUMPH, which is a transdisciplinary network aiming to improve youth mental public health, based at the University of Glasgow.

The National Survivor User Network (NSUN) email newsletter is also a great place to find opportunities like this. I would recommend signing up with these networks if you want to find out about current research and lived experience opportunities related to trauma and mental health.

Whilst I was outside the criteria of young people aged 18-25 – I have just turned 31 – I emailed the lead researcher anyway. Accessing dental healthcare can be impacted by complex trauma, and I can see how my own lived experiences have made it hard for me to look after my dental health.

I’ve wanted to talk about this subject for a while, so this seems like a great way to have my voice heard and see if there is further potential to be involved as a lived experience expert.

In the end I was welcome to contribute, and took part in an hour-long workshop with the lead researcher, Dr Easter Joury. We were joined by another service user whose lived experience was also valued.

I focused primarily on talking about what a trauma-informed approach is, and how this is relevant to dental healthcare.

I explained how a trauma-informed model of mental health explains depression as a symptom of misdiagnosed and unprocessed complex trauma. Therefore, many people would benefit from a trauma-informed approach to healthcare like this, including young people with depression.

I talked about how people with lived experience of complex trauma need specific trauma-informed care, especially in settings like dental healthcare.

I also shared my insights into the wording and language used in research questions, and suggested further questions which need researching from this trauma-informed lens.

“This was one of the most productive workshops ever – it really shows the value of lived experience. You are the expert, not us. Thank you!”

Dr Joury’s comments at the end of the session

It feels great to be valued like this, and to have the potential to really shape the kind of research which will impact people’s lives for the better. I hope there will be the chance to be involved as a lived experience expert as this research project develops, because trauma-informed dental care is definitely something I’m keen to raise awareness of.

I also think it’s important that research participants are valued for their time spent in workshops like these. I will earn a £20 voucher for my time, and was given a range of choices for this, which I appreciate.

If the researchers want to embed lived experience into the next stages of their project, the INVOLVE lived experience/co-production guidelines are a great framework. In recognition of the great value we can bring to projects, this also includes payment for our work – the only way we can sustainably and fairly continue to progress towards the change we need.

Thanks for the opportunity Dr Joury, and I hope I can continue to be involved as your much-needed research project evolves.

P.S. And a bonus outcome for me – I was empowered to book a dentist appointment for the first time in many years!

Book Review: Field Guide to Lies and Statistics – Daniel Levitin

Title:A Field Guide to Lies and Statistics
Author:Daniel Levitin
Year:2014
Importance:4/5
Accessibility:4/5
Recommended:4/5

This book is a ‘popular science’ type read that you find in the non-fiction bestseller charts at airpots. That means it’s a pretty easy, entertaining read, and you’ll might learn a few things which make an impact.

Reading this helped me begin to be more critical of the things I am conditioned to believe as facts by science. It helped me see the mental health system in a different light, when I began to read academic papers and uncover the truth for myself about the different labels I’d been given.

One part of the book stood out for me amongst all others. Levitin uses an example of when we bump into somebody we know, seemingly out of pure coincidence, somewhere totally out of context. It feels like the chances of that happening were so small, we are both absolutely amazed to see each other there – “Wow! What are you doing here? What are the chances?!” Yet, it’s happened to all of us.

From a statistical point of view, yes, the chances of meeting that person in that spot at that exact time, are very small. But when you look at the bigger picture, the chances of meeting anybody that you’ve ever met before, in any location and at some point in time, are very high.

Reframing this was a big lightbulb moment for me.

I have since used it as a way to remind myself there might be another side to the statistic, a bigger picture we’re not seeing. And that big-picture thinking allowed me to see beyond the current mental health system which is failing and harming so many of us, and instead recognise complex trauma for what it is, something so big that it emcompasses every aspect of our lives, and needs a trauma-informed approach across the whole of society.

The chances of that positive change happening? 100% if it has anything to do with me!

Have you read this book too? Share your thoughts in the comments below.

Research analysis

Reduced anterior cingulate and orbitofrontal volumes in child abuse-related complex PTSD.

Thomaes K, Dorrepaal E, Draijer N, de Ruiter MB, van Balkom AJ, Smit JH, Veltman DJ. Journal of clinical psychiatry
2010; 71(12):1636-1644

https://europepmc.org/abstract/med/20673548

OBJECTIVE: Classic posttraumatic stress disorder (PTSD) is associated with smaller hippocampus, amygdala, and anterior cingulate cortex (ACC) volumes. We investigated whether child abuse-related complex PTSD–a severe form of PTSD with affect dysregulation and high comorbidity–showed similar brain volume reductions.

METHOD: Measuring gray matter concentrations in referred outpatients with child abuse-related complex PTSD (n = 31) compared to matched healthy nontraumatized controls (n = 28).

RESULTS: As was hypothesized, patients with child abuse-related complex PTSD showed reductions in gray matter concentration in right hippocampus (P(SVC corrected) = .04) and right dorsal ACC (P(SVC corrected) = .02) compared to controls. In addition, a reduction in gray matter concentration in the right orbitofrontal cortex (OFC) was found. Impulsivity correlated negatively with hippocampus volume, and anger, with hippocampus and OFC volume. Comorbidity of borderline personality disorder–compared to comorbid cluster C personality disorder–accounted for more extensive reductions in the ACC and OFC volume.

CONCLUSIONS: In complex PTSD, not only the hippocampus and the ACC but also the OFC seem to be affected, even in the absence of comorbid borderline personality disorder. These results suggest that neural correlates of complex PTSD are more severe than those of classic PTSD.

What does this research study show us?

Important conclusions:

  • Individuals with child-abuse related complex PTSD show reductions in grey matter concentration in brain in these areas:
    • Right hippocampus,
    • Right dorsal ACC and
    • Right orbitofrontal cortex (OFC)
  • Impulsivity correlates negatively with hippocampus volume
  • Anger correlates negatively with hippocampus and OFC volume
  • Comorbidity of borderline personality disorder meant more extensive correlations with ACC and OFC volume
  • Complex PTSD affects the hippocampus, ACC and OFC
  • This neural impact of Complex PTSD is more severe than classic PTSD
  • These effects are seen even without comorbid borderline personality disorder diagnosis

So, the effects are worse if individuals were also diagnosed with comorbid borderline personality disorder. But the effects were otherwise present (and still more so than classic PTSD) in individuals without this diagnosis.

If those both with and without this BPD diagnosis have the same neurological symptoms, then the common correlate is trauma, not the BPD diagnosis.

This is evidence that the borderline personality disorder diagnosis is a meaningless social construct which further serves to re-traumatise survivors of complex childhood trauma.

To explain the fact that those with a BPD diagnosis have markedly more volume differences than those without, we could consider the fact that these individuals’ trauma experiences (perhaps they were more severe; perhaps they were women more likely to be diagnosed with BPD than PTSD; or simply lived in an area with better access to services) led them to try and access help from the mental health system, which gave them their diagnosis of BPD.

Given what we know about the stigma attached to this diagnosis and the lack of a trauma-informed approach within the mental health system, it’s a likely theory that the individuals diagnosed with BPD have higher correlates because they have been diagnosed with BPD. This diagnosis has caused them more trauma to add to their complex trauma.