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. ??✨
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.
Yesterday I wrote a little update on Instagram about the ongoing struggles in my life, with complex trauma at the root of it all.
Despite a lifetime of asking for help in every way imaginable, I’ve never found the right support. The “help” I’m supposed to accept just makes it worse. Trauma on top of trauma. And I know I’m not the only one who now feels like I need help to ask for help.
It was amazing to reconnect with everyone through the safe space of my @EyesOnTrauma Instagram page, and feel so heard. It also reaffirms another feeling I’m struggling with at the moment. I wrote about how the first stage of trauma is to feel alone, but now I am beyond that, realising I am far from the only one in this shituation (new favourite word).
It becomes clearer and clearer that so many of us are struggling with the same things.
And we’ve all had enough. “Mental health awareness” & “it’s OK to not be OK” is absolute bullshit. It is NOT OK to be not OK for so long. It is NOT OK that the “help” causes us so much harm.
And there is an answer:
We need non-clinical trauma-informed crisis spaces & healing communities. This is so clear to me, and to so many of you.
I’m making this my mission. The goal is a healing community, beginning with a crisis space. A fire burning 24/7, holding hope even when you can’t see the light. Because suicidal crises don’t stick to 9-5.
I want to build this for myself, because it’s what I need and deserve. I want to build it for you, because you need and deserve it too.
I want to build it for our ancestors who went before us, who never had the chance to break these cycles.
Perhaps most importantly, I want to build it for every child who will be born tomorrow & should never have to know this struggle.
So I started yesterday, with a fire. Under the moonlight. Exactly how nature intended us to heal, far from how society thinks we should. We’re going to show them there is another way, a better way.
I’d like to start with a crisis space in Brighton, UK. i’d love to connect with anybody also keen to make this happen. your words are valuable. Any other support you can offer, also.
Let me know if you’re in. Together we can make the change we all desperately need & deserve. see you at the fireside ???✨
I love watching documentaries. Especially in the autumn, when it’s raining outside and I’m cosy in my tiny-campervan-home. Last night, I discovered a new two-part documentary on BBC iPlayer, ‘Don’t Exclude Me’, in partnership with the Open University.
With school exclusions at their highest in a decade, this series features Milton Hall Primary School in Southend, where teachers recognise exclusion isn’t the best option. In desparation, they ask behavioural expert Marie Gentles to visit the school and help them manage their most challenging children’s behaviour. Marie was previously a headteacher for 10 years at a PRU (Pupil Referral Unit), so she brings great experience with her.
A Trauma-Informed Lens
I’m interested in watching this documentary from a trauma-informed perspective. Trauma is overlooked across the whole of society. Not only is it misdiagnosed within the mental health system, but it also needs far greater recognition in schools, hospitals, the justice system – in fact, any other social system you can think of.
Schools and exclusions are particularly relevant. I am sure that we will look back on exclusion as an awful practice to still be carrying out in 2021. Why? Because the behaviours which lead to exclusions are likely a manifestation of childhood trauma, which is often overlooked. Instead a child is excluded, their path negatively set for life. They are punished when what they really need is trauma-informed help.
I also write this as a 31-year-old who experienced early childhood trauma, which manifested as extreme behavioural ‘meltdowns’ throughout my childhood. Teachers at my primary school also tried their best to help me, but the root trauma was never identified or dealt with, and it has since cropped up again and again. I am still experiencing and learning how to manage these ‘meltdowns’ – which I have since discovered are emotional flashbacks – as an adult. And that’s 100000x worse.
I was excited to see ‘Don’t Exclude Me’ shares the view that exclusions are to be avoided. But will it actually go where it needs to go, identify the problems at the root cause, and give the children the trauma-informed support they need?
Children’s Extreme Behaviour
The teachers at Milton Hall are regularly challenged by extreme behaviour, shown by a small number of the very young pupils. This behaviour includes disruption, aggression towards teachers & other pupils, self-harm, inability to focus, and all of the other undesirable & unsafe behaviours you can imagine in a school setting.
Beyond school, these sorts of problems can set off a chain which leads to a lifetime of struggles – with mental health, phsyical illness, unemployment, addiction, homelessness, prison, which can even lead to early death.
The sadness was poignantly captured in one frame: a young boy, head down and kicking the ground, alone in the playground whilst his peers played happily around him. His teacher explained that, no, he doesn’t have anyone he identifies as a friend.
His challenging behaviour alienates not only his teachers and parents, but his peers too. Humans are social animals, needing connection with their ‘tribes’ to feel safe and purposeful. Trouble forming childhood friendships can be the beginning of unhealthy relationship patterns across all areas of life, manifesting as bigger problems and Complex PTSD in adulthood. It’s sad to think of children starting their life like this.
Tackling the Problem
So, we need to solve it now, before it becomes a problem for life. And the teachers at Milton Hall want to do exactly that. They are brilliant, recognising the children are struggling with their emotions. It’s wonderful to see their compassionate attitude towards the children, and how much they truly want to help them.
But teachers are just like the rest of us. They are human. They have their own emotional skillset, their own unconscious triggers, and are pushed to their limits when trying to deal with children whose behaviour quickly becomes extreme. The teachers at Milton Hall refer to these as ‘meltdowns’.
‘Meltdowns’
When I was a child, I had extreme meltdowns which the adults around me called ‘tantrums’. I think meltdowns is a little more compassionate, so we have made some progress. But three years ago, whilst researching complex trauma, I discovered even better language to use: emotional flashbacks. Wow. It explains everything. And yes, I admit it, I started shouting at the screen whilst watching the program. Because they didn’t know either.
To me, and other trauma-informed experts, it’s now clear that challenging behaviour stems from emotional trauma. These ‘meltdowns’ are in fact emotional flashbacks. This is the language we need to be using, so we can compassionately validate the real problem and find a trauma-informed solution.
When children have extreme ‘meltdowns’ like this, it’s a sign of unprocessed trauma stuck in their bodies. Something overwhelming has happened which has caused a disconnection from the self and others. Because this was never dealt with and they don’t have the skills to cope with it on an emotional level, it will keep manifesting in bodily and behavioural ways until properly addressed.
Emotional Flashbacks
The program gives further evidence of these emotional flashbacks. We think of trauma as some big, scary, complex thing that only ‘the professionals’ know how to deal with. In fact, it becomes quite simple to identify and to work with, when you know what to look for. (And pssst, many professionals don’t know about this – yet! Help us spread the word!)
At one point, during a ‘meltdown’ where he was hitting a wall in the corner of the classroom, a teacher tried to comfort a young boy and asked him to talk about his feelings. He snapped back, “No we don’t talk about emotions.”
From a trauma-informed perspective, it’s clear that the child is having an emotional flashback. The emotions are still trapped in his body from a previous overwhelming experience, and manifest as these behaviours when triggered by something in his environment. The instant retort sounds like repetition of the words an adult said to him during a prior traumatic event.
During an emotional flashback, the primal centre of our brain takes over and the rational, cognitive areas go offline. Logical communication doesn’t work. This sends us into fight-or-flight mode, appearing as the hypervigilant and aggressive behaviours seen in the children on this program.
When children are having a ‘meltdown’ and say “I don’t want to talk anymore,” this often frustrates adults trying to help, who respond with “We can’t help if you don’t communicate with us.” Actually, the child is already sending a clear sign of communication – they are having an emotional flashback, and cognitive communication is not what they need right now.
They need a safe attachment and safe space to sit with their emotions. These extreme emotions already come from a place of feeling alone, scared and disconnected. Excluding them is punishing them for what they have already experienced all over again.
Marie understands the concept of safe attachment brilliantly, and recognises it is what these children are struggling with. She empowers the teachers (and parents) to practice making safe attachments with the children in a simple yet effective way, with quick results.
These are the kinds of interventions the children need, but I’m worried this is still only dealing with symptoms: the children also need trauma-informed help to get to the bottom of the emotions hiding there.
But What Is Trauma?
When I talk about ‘trauma’, I ask you to open your mind to its definition. Any overwhelming emotional or physical experience can be traumatic. We often think of trauma and PTSD as something only veterans experience, or car accidents, terrorist attacks, etc. – this is ‘Big T trauma’. But anything that overwhelms the nervous systems and disrupts our connection to ourselves and the world around us – ‘small t trauma’ – can be considered traumatic. This is more likely if we are left alone to deal with an overwhelming event and don’t process the incident afterwards, or if the traumatic circumstances persist.
There are many, many things a young child can already have been exposed to which cause trauma, just within a home and family environment. We are aware of how things like parental addiction, being in care, having a parent in prison, etc. (Big T) can be traumatic for a child. There are also many other things (small t) that can have equal traumatic impact, which are often overlooked, especially if the rest of the child’s environment and family is otherwise loving.
For example, domestic violence doesn’t have to mean physical abuse. Overwhelming emotional events can be equally as traumatic. My parents didn’t physically hit each other, but witnessing my father screaming at my mother until she cried was traumatic for me. Being sexually molested, even if it is ‘above the clothes’ (a categorical definition the police use) is traumatic, especially for a child and especially if they can’t tell anyone, or they tell and nothing happens.
Even being sent to boarding school, caring for younger siblings, comforting a parent who cries a lot, spending your childhood away from a parent, having a parent who always works or is simply unable to meet your emotional needs… if it’s overwhelming, physically or emotionally, disrupts our connection to self or others, and we feel alone dealing with it, then anything can be traumatic.
Trauma knows no barriers. Traumatic experiences affect all ages, races, genders and classes. Yes, distinct experiences are often culturally and socially mediated across these categories. But overall, trauma is an inherent part of human life. We are all likely to experience it. It’s how we deal with it, that can turn it from a post-traumatic stress disorder to a post-traumatic growth experience.
The saying goes that ‘it takes a village to raise a child’ – I think there is a lot of pressure on parents to be the entire village today, as we live in ever more socially isolated worlds. This program beautifully demonstrates how it’s so important for a child to be supported by multiple healthy adult influences, with the children’s parents, teachers and Marie all coming together to support each other.
Marie’s Expert Input
Marie Gentles spends valuable time at the school working with the pupils and teachers. She is very empathetic, quickly recognising that the children are overwhelmed with their emotions, and need a safe attachment to help cope with those feelings.
She works with the teachers to help them build these attachments with the children, giving them simple practical skills to do so, starting with a basic intervention to get a child’s attention straight away when they say their name. By creating safety in the small moments like this, the foundation is there for a secure attachment to develop.
Marie also visits the children’s families at home to make sure the good work can continue and be supported out of school. It’s clear that the children’s mothers love their children and are doing the best they can with the skills they have. They are grateful for the help, and positively surprised by the difference it is already making.
What About the Root Cause?
But still, I’m worried that the root cause hasn’t been mentioned. Marie so rightly identifies these children have trouble with safe attachments. Why is nobody asking what happened to these children to cause this trouble with attachment & emotions in the first place?
Because it’s a scary question to ask. Because the sad truth is that 1 in 4 children will experience sexual abuse in their childhood. Many others will experience other kinds of abuse and trauma. Where are these children? Well, they are the ones having the meltdowns. But maybe that’s too taboo for a TV series. Or maybe it’s finally time we get rid of this taboo, once and for all, and actually give people the trauma-informed help we need.
Nobody ever means to cause harm to those we love. Especially parents, who are only doing the best they can with their own emotional skills. Most parents would be absolutely devastated to know of the harm they have often unintentionally caused their children. Many parents are willing to try and do better, armed with the right skills and support. Some parents are unfortunately unable to face this guilt and can continue to be in denial over the harms their children face – these are the children who need our voices the most.
So, sadly, this will have been the experience of some of these children. And unless we have the courage to ask, the courage as parents to face up to mistakes and the courage as society to face this final taboo, it will keep happening.
The Journey Continues
After successfully navigating a ‘meltdown’, thanks to his teacher and Marie’s support, the young boy was happy to rejoin his peers in class. With his hands still over his face, he sheepishly walked back in again. I know it well: the hangover feeling of shame and not-quite-ready-to-make-eye-contact, another telltale sign of an emotional flashback.
I can’t wait for the second episode. I’m really hoping they address trauma – they haven’t said the word once yet – otherwise it’s another missed opportunity and more shouting at the screen for me.
I often wonder what life I would have led, had somebody identified my trauma and emotional flashbacks for what they really were. And that’s why I’m so passionate about what I’m doing now, raising awareness for trauma-informed care & practice, and in particular raising awareness of emotional flashbacks.
And some good news already – the boy in the playground has made his first friend.
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!
