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On labelling

I have recently been exploring how I feel about diagnostic labels used in mental health as a result of many things – including a really interesting event I attended called “compassionate approaches in mental health”.

The website is here for your perusal: http://compassionatementalhealth.co.uk/about. The day was full of laughs, tears and bonding.  I’d made quite a massive effort fighting fatigue and pain to get there but I did admit (into a microphone!) that there was still a part of me deep inside gagging at the idea of all this touchy-feely lovey-dovey stuff.

And I am glad I did go – not least to have met some very wonderful people and to learn more about an extremely promising model of care currently being piloted in the NHS- the Open Dialogue Approach. I will try to write more about that but there’s a link here for you: http://opendialogueapproach.co.uk/.

One of the speakers introduced us to this “Drop the Disorder?!” group  which really got me thinking more about the language of mental illness and disorder. Drop the disorder?! is described as “a discussion group around the debate in psychology concerning the biomedical model of distress.” As I’ve read around and listened to what people have told me, it struck me that a lot of what is described as “mental illness” is commonly experienced but extremely difficult emotional distress that is an entirely normal part of being a human being. Most people seem to cope with varying degrees of “fitting-into” the society we live in.

There are some people though who really struggle because of trauma, abuse, neglect, inadequate parenting, the effects of power structures, the way society is organised and yeah, possibly some biological propensity towards more intense distressing experiences or uncommon distressing experiences that the rest of society is not really set up to understand or support us with.

The reason I personally chased a formal diagnosis was partly because I always felt defective. But also because when you struggle to trust your feelings and thoughts, it’s so reassuring to have someone say “objectively, you are disordered or disabled” even though it is far from actually objective. Regardless, you feel seen and to some extent understood through the label, at least, you know for sure you need support and that things are difficult. Bizarrely for me, the mental health professionals I met recently on my recovery journey were much more progressive in their attitudes to mental health labels than I was, which meant I kept feeling like they were invalidating my experience and distress by normalising it, when they were in actual fact fully validating my experiences (just not in a way that felt familiar to me). I do have PTSD and depression diagnoses but I can now see that those words are fairly limited in the ways they can describe my actual difficulties day to day.

It felt like labels would bring me validation, understanding, a sense of shared experience with others like me, social care, health care, therapy, welfare support (in theory at least). But I was also starting to see how much overlap and subjectivity is involved in the categorisation of emotional distress. And perhaps also feeling a bit more confident in my ability to know what my experience is, without always needing the diagnosis to prove it for me. I started to understand that some people were deeply unhappy with, or even traumatised by, their labels – feeling them a burden or a straitjacket imposed on them by services. It’s a hugely complex area and I don’t know what the right answers are but I do know that currently, without a mental health diagnosis accessing the support you may need may prove to be made even more difficult than it already is for those sporting labels. And that made me wonder what an alternative system would look like.

How would we provide for those with more uncommon levels of distress, that prevent them from leading lives of meaning – distress that makes people end their own lives? How would we organise the welfare state to support them without the diagnostic labels that currently allow us access to therapies funded by the health service?

The diagnostic system which often provides much of the structure to mental health campaigns has been helpful in helping the general public understand that people who have been given these labels are suffering in a way that is as serious as a physical dysfunction, but it is felt by many that the language is limiting in ways that deny (or misdirect attention from) the true nature or extent of external stressors, injustice and trauma in our society.

But what does that alternative language look like, that will help us support those in the most distress? What campaigning-friendly words, ideas or concepts will best communicate to the public that this emotional distress can be as serious and as deadly as cancer without using the language of cancer and disease?

Bewildered by benefits

EPSON MFP image
All rights reserved Bibi Senthi 2016

*Ramblings and thoughts based on my own experience and those of people I know only.*

Denial about my mental health problems has helped me find work on many occasions but it also meant I approached work in a way that was unsustainable. Although I have interests and motivations, I haven’t been very clear about my focus and so followed a somewhat wandering career. I didn’t factor any time for recovering, self care, or make allowances for any of the difficulties I might face in the workplace. So of course I would eventually get overwhelmed and go on sick leave and resign. Job seeker’s allowance seemed the most denial-friendly way to cope with this until I could muster up some strength to find something, almost anything, that I could manage. And so the cycle began again. And again.

At some point you have got to accept that you have to do something differently to achieve a different result. In 2012, I did something I have always done, which was to seek support in a superficial way. I did CBT for spider phobia, which helped a little, but it soon became clear there was a lot more going on. Usually this would have been my cue to give up on therapy and hibernate till I could restart the cycle.

Time for something different….

I was lucky enough to be challenged and supported to try something different by a clinical psychologist. Compassion focused therapy and a blend of other approaches with enough time to develop a safe therapeutic relationship meant I could start doing therapy by actually experiencing my feelings in therapy and learning how to tolerate them. Exploring things by experiencing them rather than just talking about them. You just can’t think your way out of emotional problems.  More about actual therapy another time but this was the reason I was able to accept that I had longstanding difficulties and so I decided for the first time, to apply for Employment and Support Allowance (ESA) instead of Job Seeker’s Allowance.  I also applied for Personal Independence Payments (PIP) a non means-tested benefit for the extra costs of living with disability.

It’s actually very destabilising to have to make a case for sickness or disability benefits when you rely on denial to keep yourself going. But with support and luck it’s doable. Luckily for me I had no face to face assessments in the beginning which then meant I could take my next massive step in breaking the cycle: I stayed.

I found a flat by myself for the first time. I stuck around instead of running back home or to another city. I stayed where I was building up therapeutic and social relationships. Putting down roots.

Both benefits were a total godsend. I could afford a quiet little flat, where I felt relatively safe and create a little recovery nest for myself. As I found out more about how to manage my mental and physical problems, the money became indispensable. Trying out aids and equipment for physio exercises, taxis, emergency money for when I was in crisis, a cleaner so I didn’t get overwhelmed by the household stuff, ready meals, pre-prepared ingredients, mindfulness books, books about mental health, a self compassion course – you get the picture – there was a lot of “stuff” involved in helping me get better at managing stuff. I was thinking about work, leaving the flat a little bit more, looking at recovery services. It was exactly what PIP and ESA are supposed to be for. To help me live independently, to have a life that is a bit closer to what my life might look like if things were different with my circumstances and health.

This is where the story should end, or where it should carry on as you might hope it to anyway! Maybe I would find something sustainable in the world of paid work and no longer be reliant on ESA. Maybe I could use my experience to help others do the same. Maybe my physio and ability to get out and about with taxis may have lead to better physical health too.

Instead, I have been reassessed for PIP, and this time found to be not eligible for any of this disability benefit money.

The process of reassessment itself was severely destabilising again and increased my use of local NHS services and out of hours services over a period of months. The decision meant I also lost money from PIP but also from ESA. I can afford a lot less of the stuff that helps me cope, I feel worse and I am moved several steps back in my recovery. Not only that, this major change in my budget happened with a few weeks warning.

It isn’t rocket science – I was given a benefit designed to help me cope with life because of my disabilities. I learned to use this to help me and then it was taken away because it was helping me (one of the reasons my application was denied is because my clinic letters state that there’s been improvement in my management of my symptoms and conditions). Nevermind that this is a relative statement that requires some idea of what that improvement means compared to most healthy people. Even if I had improved enough to no longer be eligible for the benefit, there really needs to be an adjustment period before removal of all financial support.

The NHS picks up the tab for the backwards steps in recovery but not only that. The DWP ask you not to specifically request evidence from your health professionals. They also didn’t seem to request evidence themselves for my application, relying on the letters sent out as a matter of course. So to ensure future applications are more successful, do I need to take up health professionals’ precious time with documenting all my daily struggles as fully as possible, even though this isn’t an official activity that can be accounted for in time or money, or necessary to my care? Surely the health system has enough to be dealing with already?

When I read about what PIP was supposed to be for, I thought it seemed too good to be true but it sounded like me. It’s for people who can’t do certain tasks reliably, repeatedly and to a high enough standard most of the time. This includes if these tasks impact you more than a healthy person. In practice though, I felt my assessor thought the benefit was for someone who couldn’t cut a carrot on a single occasion, if she put one in front of them.

If they had said that this is who the benefit is for, I never would have applied! 

Now it seems that ESA will get cut for those “who are ill but may be capable of work soon”. Because “work should pay”. Of course you shouldn’t lose out by starting work but I literally know noone who would not want to work because they were getting enough to cover their basic living expenses already. The reasons for unemployment are of course far more complex than “I can feed myself, therefore I won’t bother doing anything at all with my life”. And let’s not forget the many people that contribute huge amounts to society without being reimbursed for it (unpaid carers, stay-at-home mothers and fathers, volunteers). I believe that the fear of benefits being removed drives longer term worklessness more than the fact that your bills are (just) being covered. People get gradually more and more scared to take a leap of faith into the employment world, especially as the very system they rely on is repeatedly attacked and cut.

To borrow from the therapy that has been helping me – We have three main systems in the brain: threat, drive and soothing. The threat system is about fear, quick reactions, self preservation and leaves little time for reflection. Both the drive system and the soothing system can help alleviate problems with lots of threat system activity. The drive system is avoidance and busyness and the soothing system is about caring, compassion and contentment and generally much more reliable at reducing our focus on threats.

The more we attack people on benefits and reduce their financial and emotional resources for coping, the less soothed their nervous systems will be, and the less likely that they will be able to find sustainable solutions to their problems, feeding an endless cycle of poor health and worklessness. Short term solutions maybe, but much less likely sustainable enriching, creative, innovative or compassionate ones. There is a world of difference between working to survive, and working creatively to improve your life and others. What could these people contribute to society if we let them feel safe?

Isn’t the safety net of resources in better-off families advantageous to children’s outcomes? Not having to count every penny and owning a home gives us the opportunity to explore different options, take gap years, take extra training courses or take advantage of unpaid internships. Obviously there is such a thing as too much of a good thing, but I don’t think that the people who have the most difficulty in gaining and maintaining employment are in any danger of getting too much at the moment.

 

 

 

 

 

 

 

 

 

 

 

 

 

Facing Shame

This event organised by Kia Kaha Psychotherapy came at a perfect time for me. I was finishing therapy and wanted some continuing link to the ideas and concepts I had found so helpful and that I was working with in therapy (particularly the compassionate mind approach to therapy).

You can see the video “Facing Shame” herehttps://www.youtube.com/watch?v=b2ZCedVuB0g I don’t want to give anything away, so I am leaving the link here without comment for you to ponder on.

Professor Paul Gilbert (@profpaulgilbert), founder of The Compassionate Mind Foundation and Compassion Focused Therapy, spoke at the event on the subject of shame.

On being accepted and loved

He makes the case that we come into this world completely helpless. We have biological needs that can only be obtained if someone cares and values us enough to nurture us. Our brains are pretty much hardwired to need to be valued because we actually can’t do anything for ourselves as newborns and we are relatively helpless for a long time compared to other animals.

When others think of us positively, they are less likely to attack us, or reject us in providing the care we need to grow and develop. These feelings of being cared for/rejected are regulated by hormones that affect our biology in a very tangible way.

For a long time I have not seen the true value of the “soft” feelings. Warmth, care, kindness and love didn’t seem to sound as important as food, clean water, shelter, education. But when we look at how we come into this world, it’s clear that our survival, our brain and our development is inextricably linked to these feelings. As such they are as much a human physiological need as food or water, (especially as our brains are developing), rather than some touchy-feely stuff that can be safely ignored while you attend to “more important” things. Maybe not a revelation to everyone, but it is for many who maybe have struggled to get these needs met.

Compassionate mind model of the brain

The feelings of warmth, safeness and connection are part of one of the three major systems/drives in the “compassionate mind” model.

The “soothing system” is one we share with mammals and it is one of contentment, rather than one of excitement. It makes me think of a cat stretching gently whilst lying by a fire, purring contentedly. There is a lot you can say about society in the west today, but I don’t think many people would agree that contentment is something we value as much as achievement and obtaining new technologies and Stuff. I mean I am content with my mobile phone but since I got it, at least five new versions have come out that are not (as far as I can tell) dramatically different to mine.

And that is likely due to our “drive system”, which is focused on resources, money, status, pursuing, achieving and consuming. The final system is the “threat system” which is all about protection, safety-seeking, fight, flight, freeze, submit. This system is fast and takes over quickly when we reach the ends of our tethers. It pretty much prevents a lot of logical thinking, because, well, when faced with immediate danger, such as a hungry lion, it’s probably best to act quickly, rather than have a meeting or research the problem. But like a smoke alarm, it is sensitive and goes off to “be safe, rather than sorry” and while we can try to balance this with the drive system, the soothing system is really much better equipped to reset the smoke alarm.

Obviously we need all these parts of our selves. Being content won’t get us the food we need to survive – we need drive. We need the threat system that helps us run faster and longer when our lives depend on it. And our survival also depends on the soothing system and our ability to cooperate and to connect with people who we can depend on. But they need to be in balance. Constantly feeling threatened is an exhausting way to live and  just surviving, doesn’t help us to feel happy or fulfilled.

Shame

Shame, the feeling that we might be cast out of the family of human beings, or that we are not worthy, switches on our threat system making us more likely to be aggressive or angry. It can increase our drive system and the need to achieve things, make more money, gain more power, obtain more Things, take drugs that excite us and do reckless things that keep us feeling exhilarated (which can be unsustainable). But it can also decrease our drive, when the stress of the shame makes us feel low and depressed.

Interestingly people who feel shame talk about being defective, rather than not meeting certain standards eg. “I am bad/evil”, not “I am not as good as I should be”.  It doesn’t seem to be about what you can do, but what you are – which is the sort of language that feels permanent and un-fixable, unlike a behaviour that could be changed. It’s easy to see why these feelings might be extremely powerful. In fact Prof Gilbert argues that shame is toxic-it stops us feeling connected. We feel unsafe, unlovable, unacceptable, isolated and unhappy. When we feel shame in interactions with others, we start acting as if we are threatened – either aggressively or submissively, which can then mean our relationship is damaged and not knowing how to repair that damage or feeling ashamed of the damage caused, means things spiral out of control.

What about the idea that shame is a way of making sure people behave in socially acceptable ways – that is a helpful emotion for social cohesion?

It seems to me that society is moving away from shame-based approaches to encourage people to act in way that is helpful for society. In general, we are moving from corporal punishment, smacking children and black and white rules for behaviour towards regulating or understanding anti-social, less desirable, or unhelpful behaviours and trying to help people change these. But the desire to judge some as ‘not worthy’ and write them off or treat them as if they don’t have the same rights as everyone else is not far below the surface and with the simplicity and certainty shame and judgement brings, I can see why.

What Prof Gilbert tells us about the difference between shame and guilt, seems to describe this shift. In terms of shame, we see behaviours that make people hide or avoid showing themselves – to make themselves seem acceptable, because that is the threat. This is the brain sensing the threat that we might be cast out of society and left to fend for ourselves and doing anything it can to maintain that place. Shame causes us to want to avoid responsibility, blame the victim, get angry with anyone who stumbles across the bad thing we have done. Because shame is so overwhelming and powerful an emotion that reaches into our core and tells us we are inherently defective.

Of course, it is possible to feel this shame, even when we have done nothing wrong. For example abuse survivors often feel overwhelming shame, but this burden is not theirs, it is the way the abuser has learned to cope with the shame of what they are doing – to pass it on to the victim and avoid responsibility for their actions.

In contrast, guilt is focused on the damage done by our behaviour, and empathy with the person we might have hurt. We are still human, but we have done something terrible. This is altogether a much less overwhelming emotion than shame. It is more likely we will be able to own up to something and take responsibility if we feel guilt for something we have done. The brain will not be detecting the extreme threat of being cast out of society in the same way. Indeed Prof. Gilbert mentioned that criminals that exhibit more guilt are much less likely to reoffend than those who feel more shame for what they have done. Which of course, brings up a lot of questions about our prison system, punishment and rehabilitation which are beyond the scope of this post.

Compassion

Unsurprisingly to work with an emotion that is toxic to connections and relationships, the tools for the job seem to be about cultivating empathy and connection again and bringing down that threatening sense that we are defective, or about to be demoted from our status as a human. This safeness can be experienced by activating the soothing system in safe, respectful compassionate relationships. But what if you have never related to anyone like this and don’t know how to feel safe, no matter how compassionate the other person is?

The good news is that it is possible to activate the soothing system by yourself. Compassion focused therapy (CFT), harnesses the power of our imagination to begin fertilising the ground for the cultivation of safe relationships. As Prof Gilbert explains, we are very good at tricking our brains into reacting to imaginary things – an erotic imagining about someone we have a crush on or that slice of chocolate cake we really want to eat. Our brains and our bodies react to these imaginings as if they are real. And similarly, yelling and judging ourselves, makes us feel under threat and bullied – releasing stress hormones, despite the absence of an external bully.

So CFT is about imagery, about creating feelings of safeness, of being “okay”, while working with the resistance we might feel to these scenarios in the context of a healthy respectful therapeutic relationship. As we learn to activate the soothing system in therapy and in our minds, our brains can relax a little and we can start to feel safe in relationships we make in “real  life”, allowing us to find healthy social connections, to trust and to take responsibility where we have wronged others, or to discard shame that doesn’t belong to us, where we have been abused.

We can then learn to give compassion, receive compassion in healthy relationships and also and importantly, we can learn to give compassion to ourselves (and be willing to receive it).

Prof Gilbert always seems keen to emphasise the courage involved in compassion. It’s not the soft option – far from it. Compassion does require that we are sensitive to suffering. That we notice it. But to approach that suffering, to face those demons, to look into distress and to engage with it and try to prevent or alleviate the pain requires courage and dedication. It is not brave to ignore the cries of someone stuck in a fire or to push our pain down deep and pretend we are fine. It is brave to enter a house on fire to rescue someone or to look deep into our pain and validate and try to soothe it.

I love the idea that therapists are there to en-courage clients – to help us to be courageous in facing our demons, and sometimes to model this courage and “hold” it for us.

Dr Mary Welford – working with compassion in schools

Dr Welford presented the work she had been doing in schools. When using the compassionate mind model with children, adaptations needed to be made. The 3 systems, were each represented by an icon that children could understand. So the drive system was represented by Buzz Lightyear, a danger sign for the threat system and a picture of people connecting/embracing was used to represent the soothing system. Children were introduced to the idea that they were like a mobile phone with apps on it. They could decide which app was being used and if it was unhelpful try to use a different app. So if you were using your “threat app” and everything was still going wrong, maybe switching to the “connection app” and trying to connect with the other person might help more.

The most important point I picked up from this really interesting talk was that it was often a teacher that people remembered when trying to remember a time that someone was compassionate to them. Surely just another reminder about how important teachers are to the emotional wellbeing of children and that they need the space and time to engage in this vital part of their role as well as to cultivate compassion for themselves.

Dr Michelle Cree – working with perinatal shame and compassion 

My sincere apologies to Dr Michelle Cree (and anyone who wanted to read about her talk), who presented an interesting talk on her work with shame and compassion in a perinatal setting. Although I did find the topic interesting, by this time in the afternoon my brain fog was descending and I have very few notes on this work. But there’s a book link here if you want to read more!

I do remember thinking how important this work was. It was good for the mother, but being able to positively influence a person’s mental health before they are even born has to have the potential to reap big rewards for the people involved and for society.

This quote especially stuck with me.

“If we can hear the mother’s cries, then she can hear her baby’s cries” (Ghosts in the Nursery – Fraiberg).

In a similar vein, I would love to see similar work done with young carers, as the burden of care-giving at a young age can be as overwhelming to us as parenthood can be. There are likely to be many similarities around responsibility, self-compassion and guilt/shame and it’s an area that doesn’t always get the attention it deserves.

I was interested to learn that pregnancy itself causes an increase in the activity of the threat system (presumed to be due to the increased vulnerability to predators), which could potentially start triggering past issues as well causing generalised anxiety. I was also fascinated to learn that the soothing system, part of which involves the bonding hormone, oxytocin has a more complex role, which has a dark side. If we have experienced trauma or negative events connected with the soothing/bonding system, the massive influx of oxytocin around pregnancy and birth can trigger very difficult feelings and memories in us in an unexpected and alarming way. 20160117_223701

I really enjoyed this event and learned a lot about shame and compassion and it is always life-affirming to spend time in the company of people interested in compassion. The settings in which the CFT approach can be applied seem to be endless. I look forward to my own journey with compassion as well as hopefully seeing more of this work reaching more parts of society as time goes on.

The Compassionate Mind Foundation is where you will find more information, events, training and links to the research. I haven’t read a great deal of the research, but my own very detailed qualitative and subjective trial of n=1 is showing promising results!

I will leave it up to you to interpret the evidence base, in terms of impact but a read of “The compassionate mind” certainly puts up a very strong argument for CFT and similar approaches. We know that good outcomes usually come together with social support, emotional resilience and good therapeutic relationships and that bad outcomes usually come from social isolation so I don’t doubt the likely benefits.

I am also not sure the research will ever truly be able to capture the full impact of something that goes to the heart of being human –  helping people feel safe, trust others and connect. It feels to me too amorphous a concept, but there are plenty of people with a great deal of compassion, dedication, courage, determination and intellect doing their best to quantify and conceptualise it as much as is possible and I am hopeful that this work yields great results in terms of ways to help alleviate suffering on this planet.

Fall in love with ordinary

I recently completed a Mindful Self Compassion course with a lovely lady called Annette (http://www.annetteboden.co.uk/mindful-self-compassion) . I will do a post about the course itself when I have some more energy but one of the poems she read to us on the course was “Aimless Love” by Billy Collins.

Billy Collins falls in love with a mouse, a seamstress, a bowl of broth and his soap among other things. We all fall in love on holiday, when we see new beautiful things. But our eyes are so used to our everyday surroundings, it takes effort to notice anything really. That’s okay, it would be extremely hard work to always have to consciously do everything. I wouldn’t know where to begin with walking, for example. And that’s super efficient and excellent, but it does mean the brain is set up to take a lot for granted. On top of that it gets a bit carried away with imagined problems or thinking about the past. Both useful things our brains do to keep us safe, help us achieve our goals and learn lessons but sometimes we struggle to pay much attention to the present moment because of this. And isn’t that kind of where life is?

The poem reminded me of a horrible day walking back from an appointment when exhausted and lost in anxious thoughts. I looked down at my boots and saw they were covered in cut grass. Suddenly I was brought into the present moment. I do like the smell of cut grass and something about the grass all over my boots made me smile. I think it made me feel the delight of getting messy as a kid.

Now obviously no amount of wet blades of grass ruining your boots is going to solve your problems, but it did make one of my many moments of life on planet earth pleasant, nay delightful even. There are plenty of mundane, boring and distressing moments so it’s good to add some weight to the right side of the scales. And the more you do it, and the more you notice it, the more your brain looks for and finds these (sometimes slightly ridiculous) little lovely things and the more lovely moments you have. And you don’t have to go anywhere special to find them. In fact I have found quite a few just sat on my sofa staring out the window.

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So I thought I would make a list of ordinary things I have fallen in love with. Do add your loves in the comments or on twitter or instagram if you would like to share….   #fallinlovewithordinary

 

The purples, greens, black and white of magpie wings, spread wide against clear blue sky.

Magpies – urban peacocks

The moon visible during daylight

The fuzzy bottom of the bumblebee

The tiny landscapes of tree trunks and branches

Newly emerging tiny leaves and baby pine cones

Sunlight through petals

A tiny ant scaling a green mountain

The perfect dandelion clock

The delicate skeleton leaf

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Routine enquiry into adverse experiences in childhood (REACh)

I was lucky enough (and well enough) to attend a Public Health England event this week about routinely enquiring about adversity in childhood (REACh) .  The importance of this is due to the links with an increased risk of poor mental and physical health later in life as well as the fact adverse events in childhood (ACEs) are rarely talked about until many years after they have happened. The hope is that if ACEs are identified earlier, appropriate support is more likely to be given earlier in people’s lives, especially during times when the brain is thought to be more receptive to change eg. adolescence. The approach is informed by the biology of the developing brain as well the psychological and social effects of these experiences. Some significant improvements in public health were presented by the speakers as potential benefits of this approach.

Most of the factual information, background and evaluation of REACh in Lancashire is in the presentation slides so I won’t repeat it all here. I just wanted to reflect on the day and keep some helpful links for myself but thought I’d put it here in case it was of interest to anyone else.

The questions 

I found the questions themselves validating as crucially they don’t ask you to make a judgement about how bad something was, only whether you experienced it. I found my ACE score reinforced my ability to understand and be compassionate towards myself. The score needs to be combined with your resilience score (at the end of the previous link) to put it in context and it helped to fit this structure around my understanding of myself.

I did think and (others also suggested) that maybe there needs to be a question relating to feeling “like an outsider” or “not connected” to the wider community to take into account experiences of racist abuse, abuse related to appearance or other types of bullying.

I would like to see something relating to chronic physical pain/ill health as a child in there. It’s not interpersonal trauma, betrayal or loss of trust, but it’s a chronic stressor on a young brain and it’s also not hard to see how a child who can’t concentrate, or sleep or complains a lot about being pain may be at higher risk of abuse, neglect, invalidating experiences or bullying, especially where these may be due to medically unexplained symptoms or under-recognised diseases.

Finally, an area that I would like to see included is responsibility for others as a child. Young carers may have specific difficulties that may also lead to increased risk of poor future health.

– edited 27th Feb 2016 to add:

I’d actually like to see a broadening of a lot of the questions especially as we want to capture as much as possible in a short questionnaire.

Eg. Domestic violence may be more likely to be aimed at the mother/stepmum, but there is no reason to specify which parent/guardian the violence is aimed at, unless I am missing something? That’s assuming that we aren’t relying on these specific responses to keep tabs on the statistics on gender-based violence towards women in the UK.

Do we need to specify why your parent can’t care for you or take you to the doctors? Is it necessary for this to be due to substance misuse if there’s already a question about this? What if your parent can’t care for you because they are depressed, or physically incapacitated?

Is REACh new?

I noticed a couple of niggling thoughts- don’t we already know this? and having spent a few years being involved with third sector services, such as the Rape & Sexual Violence Projectdon’t we already do this? 

Most of the ACE research in a general population has been conducted in the USA and this study in 2014 was the first time an ACE study had been done in the UK. It seemed like a critical mass of evidence (including health economic work) had been reached that was winning over more and more professionals. I also learned that in the speakers’ experiences of training staff, many people actually are not ACE aware or don’t know the full scale of the potential long-term effects of them.

Currently we ask targeted questions in targeted services. We don’t ask everyone accessing all health and care services a consistently broad set of questions about childhood adversity when doing psycho-social assessments. And importantly, we don’t routinely train all staff in a service to be “ACE aware”. In my experience, many charities and NHS mental health clinical staff have done this routinely for a long time but many other more general services don’t do this in a consistent way.

So although the idea itself isn’t new, the evidence in addition to the real-life example in Lancashire could mean that sustainable change is more likely now than it has been before. It also felt more like a movement than a straight forward top-down policy, a cultural shift, with everyone involved. The public, cleaners, security guards, receptionists, police are all a part of the approach – to understand, rather than implement a specific intervention or new programme. A real emphasis on changing hearts and minds was made.

I feel that ACE awareness can only be a good thing – in my experience, the culture of an organisation makes a big and very tangible difference to how safe and welcoming it feels. In a setting that is not a mental health specialist service, such as A&E, I can see how having ACE-aware security guards or receptionists may have a positive impact on the response to people suffering and especially to those expressing it in ways that staff may find difficult to understand.

It doesn’t provide any specific “solutions”, but it allows hard-working, caring staff the space, time and permission to really understand themselves and others. It asks them to take notice, in a consistent and open way, of the effects of childhood experiences and the person in front of them as a whole. The specific solutions to problems caused by ACEs will likely come from the staff if informed and nurtured by an environment where this approach is used.

All this has long been more likely in smaller, more dynamic charities and social enterprises, where person-centred care is less constrained by bureaucracy. The innovation here then is the addressing of the specific barriers that exist in the NHS and other services, such as the fears around storing and sharing of this information.

A few thoughts to finish on

A lot of very interesting discussions occurred but my brain hasn’t managed to retain much of it! I hope it will all feedback into the process of taking this forward. And I hope there are sufficient resources put into this to make it happen. I had a few thoughts so I’ve included them below.

The name!  “ACEs” sound so distanced from the trauma they describe and also inappropriately positive. Can you call the rape of a child an “ACE”? I don’t know, but as trauma survivors tend to minimise traumatic experiences, and we are asking people to share things that they may never have done before, maybe it’s helpful to have an academic/less-emotional sounding term for it? And it would seem the research so far done in the UK hasn’t resulted in any complaints. The term is already used across many different sectors, so it does seem to help bring all the agencies together around a common purpose. Maybe the impact will turn out to be much more important than the terminology?

Opening the flood-gates I asked about the fact that they didn’t see an increase in demand for services after asking these questions during the study. I was worried that this was just within the NHS and that the local third sector was put under pressure as a result. It seems this didn’t happen in Lancashire, but it is a potential danger in other places. I hope that any specialist services which experience increase in demand as a result of any routine questioning will be strengthened and supported.

Resilience It was refreshing to hear that the public health approach to resilience has its emphasis on the environmental factors involved in resilience. So often I have heard it implied that resilience is a property of a person’s character. And that somehow we should be able to withstand any hardship or change.  This is very encouraging as it’s easy to feel like maybe you aren’t strong enough, when factors beyond your control have some bearing on your vulnerability to mental health problems. I was pleased to see the inclusion of resilience as a property of the local community, government policy and other external factors. However I never feel “resilience” hits the right note for me. Yes, it’s about bouncing back from adversity, but the courage you need to be “resilient” is not only about “strength” in the common usage of the word. It’s also about the courage to face your feelings and your vulnerabilities and it’s about compassion for yourself and for others. I am not sure if “resilience” always triggers those associations.

Physical health A lot of the talk about physical health was about how trauma can increase circulating stress hormones and have physiologically detrimental effects. While this is important, I wanted to point out that the reverse is also true, that physical pain can make mental health worse, especially if we are told “there is nothing wrong with us”. I think there is a danger that the focus on ACEs may reinforce the dismissal of physical symptoms as psychogenic in people with mental health problems.

Does it have legs?

What really made me feel REACh could be a game-changer was that during training the staff themselves became aware of their own experiences of childhood adversity (which they had previously dismissed, or not noticed) and that of their colleagues. This seems to me to open the doors to compassion, relationships and humanness in what can be a very stressful and rule-filled environment.  It allows people who care for vulnerable people to show themselves compassion and care, which has a positive impact on their morale and work. It makes the whole thing seem like it has the potential to be “contagious”.  It also fits really nicely with my favourite model of trauma – the compassionate mind, which revolutionised my approach to my own mental health the first time I read about it.

I met a lot of very passionate, caring people with an interest in trauma from many different angles – school nurses, writers, therapists to name but a few. There was a lot of energy in that room that day and I’d very much like it to continue and grow. Maybe I was being especially optimistic that day, but it all seemed very promising to me.

There is a network online for those who work in a related area, a website for the general public and  #ACEaware on twitter if you want to join in.