Through the Glass Doors is an autobiographical illustrated book, co-created by 16 previous patients of Huntercombe CAMHS hospitals. It details the horrors vulnerable children face every day at the hands of Huntercombe (now Active Care Group) in placements which supposedly provide specialist mental health care and treatment. The book, alongside a letter of recommendation which provides lived-experience based solutions to Huntercombe’s failings, has been sent to a number of key medical and political figures in the hopes it will stir a response, in turn drastically improving the quality of care provided by Huntercombe and wider CAMHS and adult mental health services.
When you are living in survival mode, making decisions can become particularly difficult & you can find yourself struggling with indecision, avoiding decisions or handing them over to others, or making suboptimal decisions.
Suboptimal decisions can range from those that are ok-but-you-could-have-chosen-better (especially for the longer-term) to those that are outright bad or dangerous (for you).
The aim here is not to criticise the decisions made but to try & understand why they were made i.e. why do we make (and keep making) decisions that are not in our best interest?
We’ll think about the more general case of decision making in survival mode & emphasise some of the particular impacts of trauma, mental illness & disability.
A few points about decision making first:
-decision making is cognitively effortful and takes time.
-it requires cognitive and emotional reserve
-it requires consideration of the timescale of the execution & consequences of the decision.
-it requires taking into account, your interests and goals, the various options to decide between and their relative merits, downsides and costs, often over different timescales. One of the major costs to be taken into account is the cost to yourself.
-it depends on the capital (financial, self esteem, social network) you have available at the point of the decision.
-it depends on the options you really have available to you as opposed to options that could theoretically be available.
A lot the time when it comes to more critical decisions (as defined by you), we make the best/least worst/only decision we can/feel able to at the time in the given circumstances (includes our state of mind & body at the time). This is by no means unique to survival mode.
What’s different in survival mode are the following:
There is less/little spare cognitive and emotional capacity to make decisions
This also shortens the decision timescales (you are only able to think so far into the future).
This can mean that you end up making decisions that are ok for the short-term but not for the medium or longer term ‘I just need to get through to the end of the week’, ‘this is the most pressing thing right now’.
However a more dangerous aspect of the shortened time perspective is that you can end up not really thinking about decisions that will impact you in the future (beyond the farthest you can see now). ‘It’s only going to happen 2 months later, I’ll think about it then’
This puts you at risk of making decisions that are unwise/bad for future you. Thinking about future you requires doing the difficult task of future projection. It’s difficult because we don’t know what our future state of being or the future version of us will be like.
We usually hack this by just projecting our current self into the future and think what we would do in the future circumstances we imagine.
This is effortful but in survival mode it can be v. overwhelming because it involves an awful and often realistic possibility.
Namely, ‘I may still be feeling this awful in X months time, nothing will have changed’. This a very common experience in depression and other mental illnesses and in survivors of trauma and it is understandably easier and self-protective to not project into the future.
Capital: depending on how long you have been in survival mode and your wider circumstances, you will have access to varying amounts of capital. Financial capital is a straightforward one, if you have enough, it can take care of a huge part of the business of surviving.
Financial capital provides a great deal of stability and other resources. It provides a buffer against some adversity as well as against the consequences of sub-optimal decisions, which makes the decision making less stressful, & gives you more options (see below).
Social support capital is fairly straightforward as well, who do you have available to support you? The more people you have, the more help you have to take decisions and buffer their cost and consequences. Let’s move the next one, which is particularly important.
Self esteem capital (how much you value and care for yourself) is an especially important factor and one that is often eroded (or never built up) by prolonged periods in survival mode, serious mental illness and experiences of trauma (esp recurrent trauma).
Self esteem capital is vital for considering one’s own interests and the costs to oneself. If you are short on this, you may not particularly care about your interests or what happens to you or what the costs and consequences are to you.
This is something to particularly consider when you see someone making decisions that put them in harm’s way or at risk of harm or making decisions that are more about looking after (or serving the interests of) other people and actually disadvantageous to themselves.
One of the very sad consequences of trauma and abuse is that it can make one rather enured or numbed to the costs and harms to oneself ‘I’m used to not being cared about’, ‘I’ve known much worse’, ‘At least this way I’ll be helping someone else.’
Which brings us to the last point which is about options. The decisions you have to make are about/between the options you have available to you. The more options you have to choose between, the more difficult the decision making task.
So when you’re depressed, the huge numbers of choices on a menu can be absolutely paralysing. But in such states, so can deciding which of 2 outfits to wear.
On the other hand having too few options can often means that the decision is often a more critical one.
To understand the above, consider this, one of the most valuable options to have is that of not having to make the decision and being able to bear the cost and consequences of that. If you do not have this option, then the decision is more likely a critical one.
Having financial capital means that you are more likely to have more options including the above particularly valuable one. The more critical the decisions, the more each of the (few) options has to be weighed up, the greater the consequences and costs.
So putting all this together, what happens to decision making in survival mode?
1. It becomes very anxiety provoking and can lead to decisions being taken to abort/avoid anxiety.
2. Your decisions become more short-term ‘I need to get through this week’.
3. They become more suboptimal & you consider fewer costs and consequences, especially future ones.
4. You find it harder to step out of the overwhelmed moment & think about possible decisions & futures more broadly.
5. You keep avoiding & postponing decisions. One way of avoiding/minimising decisions is to make life more regimented. This minimises daily decisions (what to eat & wear, where to go), and the chances of new decisions coming up ‘Do you want to go for coffee?’
6. You try and hand over decisions to other people where possible ‘You order for me’, ‘what should I wear?’.
7. You stop thinking about the wider and longer-term consequences of your decisions and increasingly prioritise what is easiest (least effortful) now.
8. You make decisions quickly, either before being overwhelmed by the process, or on the basis of a limited set of considerations, or repeating previous decisions (what I have done in situations like this before). Such decisions can be impulsive or reflexive/habitual.
9. The problem is that these decisions are either:
-not well thought out in the moment
-previous optimal decisions but in different circumstances (e.g. decisions that helped you survive previous abuse or trauma)
-are previous suboptimal decisions that were made in comparable states of mind and/or body.
The intersection with low self esteem capital is particularly dangerous here ‘I’ve never thought I deserved better, even from myself, so I never cared what happened to me’.
One of the most important consequences of our decisions is the set of future decisions they set up and the options that we have for those decisions. The longer you’re in survival mode, you have less capital, fewer options and harder decisions.
This is perhaps the best perspective to take on the impacts of mental illness, disability and trauma and how they accumulate over time.
All of these greatly increase the cost of functioning and reduce the reserve available for decision making.
All of them limit options, either through structural reasons or because options and opportunities were never available or had to be given up.
All of them impact the available capital, often because there was never the chance to build up capital.
What might help? It can be helpful to examine one’s decisions and decision making processes with a close friend/relative or therapist who can help you step out of yourself to look at the decision without the intense emotions being so closely involved.
The short cut version of the above is to consider advising a friend on how to make the same decision. It is crucial however to skip what is often the last part of this process which ‘but it’s different it’s for me/about me’.
However one particular area to focus your efforts and use your support systems for help with is to create time for decisions i.e. stop the anxiety taking over and driving the process. Creating the time gives you the chance to consider options, consequences and costs.
Finally, try and be kind to yourself.
It is easier to learn from the decisions of your past self if you can feel compassion for those past versions of you and how they took the best/least worst/only decisions they could in the circumstances they were in.
Hisham Ziauddeen @HZiauddeen Consultant Psychiatrist CPFT, Clinical SRA Univeristy of Cambridge
The suffering is horrific. NHS dentistry, community physio, podiatry, are effectively gone now. What’s left is hard to access and limited in what they offer. NHS dentistry has become an emergency antibiotic and extraction service (after weeks or longer). Patients are often pushed into paying privately.
There’s a link between oral health and cardiac health, right up to sepsis. The cost of not having access to routine dental care (fillings, crowns, root canal) is high. Patients are in serious debt for emergency treatment, root canal & crowns. NHS dentists don’t always refer patients on for gum disease treatment and let it progress to extraction and dentures.
In the US it’s said you can tell poverty by looking at people’s mouths, the same will be true here. I will never forget a film I watched a few years ago of Americans queuing up all night (including wheelchair users) outside a warehouse for free medical treatment and dentistry.
No privacy, exam chairs, beds all set out. People shaking violently having entire mouth tooth extractions under local anaesthetic.
There’s also no appreciation of the impact of antidepressant and antipsychotic medications on dental health which can cause dry mouth increasing the risk of decay, but mental health services nor NHS dentists inform patients of products to help with this. Acute patients might have periods of sugar laden liquid meds.
Dentistry should not be a luxury.
I saw Peter Campbell, on a stage, before I actually met him. It was 1986 at Kensington Town Hall, the MIND conference where Survivors Speak Out was founded. He said many things but including “I feel positive” which I did not, having just lost my job through distress. But those words prompted me to sign up for Camden Mental Health Consortium, my local user/survivor group – which I had never heard of before then. In time, he was Secretary and I was Chair – though it might have been the other way round as these things go in mad politics.
I learned so much. Diplomacy – with obnoxious senior managers of Friern Hospital which was being closed at the time. Humour – from dry wit to hilarity and sometimes both at once. I met you there and you seemed so YOUNG. The National Self Harm Network changed me in learning I was not alone and things could be understood differently. That was Peter – things can be understood differently and spread differently, from conference speeches to Poetry Sessions (the Pineapple in Kentish Town was my favourite). It was a new world for me and the beginning of a journey that is not over and Peter was a natural, if oh-so-modest, leader. His mind quick, his poetry passionate, his friendship loyal.
I was more on the periphery of Survivors Speak Out, happiest in local activism. But I met so many impressive people – gatherings in Peter’s flat in Cricklewood, planning, strategizing and just being loonies together. I miss that sense of solidarity, Peter embodied it. He explained to me why writing the Constitution of Survivors Speak Out took so long. Many groups grabbed a template to formalise themselves. But for Peter the membership had to be consulted and properly however long it took: “it was the proper thing to do, the democratic thing to do”.
Then there were the hospital visits – whoever was in the Bin was not left to rot, Peter visited me and me him, others too, you too. Even there the activism did not stop and neither did the humour. It’s quite a thing to make a mad person laugh genuinely. The last time I saw him, so ill, so frail, I remarked that he had a Scottish accent again (well, I wrote it down because he could not hear). He smiled: “do I?”. Roots we shared.
Myself I became an academic again. In a University where Peter taught philosophy classes. The students would say: “how do you survive in this place?” Co-opted, seduced but soon disenchanted. Nobody would co-opt Peter. Teaching was activism for us both.
Peter was ahead of his time, always. Last year he said he had always thought that mental ‘health’ should be taken out of ‘health’. He said he was a psychiatric SYSTEM survivor because that system was not just psychiatry, it was society-wide. We should do more work on poverty he said but referred to himself wryly as ‘retired’.
And finally, until this year, we had a ritual of visiting Peter at the beginning of the New Year which was also his birthday. This year we were not in England so Peter and I exchanged emails instead. Then came March, his collapse in the Park and four weeks later his death. I will always be grateful that I knew and learned so much from Peter, that he was my friend, and I know that there are people all over the world who feel the same.
I still remember the first time I met Peter and the conversation we had over 30 years ago. He was so good at giving survivors a hands up, like inviting you to join his training session and watch, participate for a short while, a great mentor. I remember one time, I was young starting out in my 20s, speaking at a conference where this bastard psychiatrist made it his goal of the day to follow me around and constantly interrupt really unpleasantly.
I’d learnt from Peter, don’t react to profs deliberately goading for response. I rang him before I left, he met me at the station. We had tea as I tearfully debriefed. That was true survivor solidarity in action. The time he spoke to a nursing congress and finished with a poem, he held the room in his hands with quiet authority.
I remember us doing teaching on bipolar and psychosis, both of us giving experience and how easy it was to work with him. One of his phrases (on diagnostic abuse), “you can say I’m a plum not a tomato but if you sit on me the bruises still feel the same”. Perfect!
He welcomed me into his home in Cricklewood when I commuted from Sussex, I remember sitting with him at his table, tea, putting the world to rights together, talking through issues of the day, his encyclopaedias, his piggies, his sharp little cartoons for the newsletter, his strong support of survivor publications. We shared a lot of laughs, like for a time he became The Man from Lentheric and afterwards about one of his manic phases when he was walking so fast I was scurrying to keep up. We sat in a church and he thought we’d got married!
Kind, supportive, gentle, accepting, powerful with words but never attacking of survivors, never competing, self-effacing humility. That’s what made Survivors Speak Out so special, his accepting, caring, kindness which emanated from Peter’s leadership, he led that culture of kind, thoughtful, enquiring, wanting to learn from everyone solidarity. His contribution to survivor activism was so much and to professionals education would need a couple of books to fully convey the magnitude of it, suffice to say that we all stand on the shoulders of the work of those before us and his is massive.
A gentle giant, an elder statesman and back bone of survivor history.
Much of what people can do today, is in part on the shoulders of pioneers work such as Peter, carving a path for us and with us. He embodied inclusive, thoughtful, compassionate activism with no edge nor ego, it’s a rare quality.
His sharp intellect and wit, Mike Lawson described Peter as a Desmond Tutu, a brother to all of us, “Having a universal friendly gentle approach, characteristic along with a very keen awareness of how to listen to very distressed folk”
Peter wrote in my copy of ‘Brown Linoleum, Green Lawns’, (my all time favouite poetry book) “I will never forget how you gently introduced Dr P to advocacy!” and he wrote a poem for me based on my advocacy, ‘Crisis Advocate’.
Peter also was a gentle and quietly authoritative advocate for others, he accompanied me to Accident & Emergency a few times.
Karen Campbell, the 1st survivor director of the then Manic Depression Fellowship said;
“I will never forget how kind and supportive he was to me when I was just starting out in user development in Cambridge – he was wonderful – he came up and supported me organising a conference and gave me such a confidence boost in a really difficult working environment. And being part of Survivors Speak Out was just a lifeline. Hard to believe it was thirty years ago”.
So much Peters hallmark – kindness, willing to help, facilitate, give a hand up to fellow survivors.
Phil Thomas said ;
“Peter’s influence was wide and deep, and without his work, and that of those survivors he inspired through SSO critical psychiatry would be different.
He coined the word postpsychiatry in 1996 in Speaking our Minds.
RIP Peter, your legacy continues”
Anne Plumb’s activist archive includes many of Peters papers, letters such as this from the Guardian 27/06/87 (Hugh Freeman v others)
“Sir, I feel I should declare that I have been diagnosed as ‘manic depressive with schizophrenic tendencies’ while this may have helped the experts in prescribing me numerous “drug cocktails ” over the years, it has not proved a notable cocktail on the dance floors of everyday life. One man’s diagnostic tool is another three’s insult. Yours sincerely,
Dr Claire Hilton at the Royal College of Psychiatrists said;
‘So sorry to hear about Peter Campbell, a very special person who has influenced the lives of so many people for the better. He was the star of our RCPsych 1960s witness seminar in 2019. Everything he said made an impact.’
Peter wrote extensively for Openmind, Asylum magazine, Mental Health Today, nursing journals. He taught all professional disciplines alongside supporting survivors, working with all groups, many campaigns. SSO designed information packs. Publications, the first crisis card, advance directive information, supported many advocacy and user/survivor groups. He co-founded Survivors Poetry and was a member of the Survivors History Group. His body of work will be collated and archived so the next generation to learn from.
Thankyou Peter for what you gave us as a movement, you were the embodiment of solidarity.
And for the love and friendship you gave us your friends, who were lucky to know you.
The Mental Marching Band
You’d better wet your whistles
For the Mental Marching Band
For we’re making a wee comeback
And it’s spreading through the land.
And we’d laugh you to distraction
If we thought you’d understand
About the Mental Marching Band.
There’s Danny Ogenkenyu
On the bagpipes by the way.
And when he’s took his Lithium
Sweet Jesus can he play.
You can denigrate the madness
The song won’t fade away
From the Mental Marching Band.
We’ll all be out and running
When the storm breaks.
Down the House of Commons
Wi’ our fruitcake
You’ll have to take your medication then
Just for the music’s sake
And the Mental Marching Band
We’ll not be taking prisoners
Under blood red skies.
We’ve had too much confinement
In our lives.
We’re getting our own World War out
That everyone survives.
Thanks to the Mental Marching Band.
Let’s hear it.
Hold me – cries the girl.
The girl in hospital clothes.
She kneels on tat carpet squares,
Knuckles the joins,
Rocks against the orange armchair,
Pressing her forehead into the texurene.
Hold me. Hold me – she cries
And turn that fucking television off.
The evening team are moving back out.
They have sat in the sluices,
Watching the clock pass eight.
Coolly they edge the room,
Reading their newspapers upside down.
Drift near the window curtains
Counting, counting, checking the back way out.
Hold me. Hold me.
Hold me. They gather round neatly,
Finger their cuffs in unison.
When will the slap come?
When will the blanket be brought?
Evans is Jesus.
Evans is the bastard.
Coming from the nursing station
With his blue suit on.
Every sympathy is order.
They take her to the treatment room,
They take her to seclusion.
Beyond harm’s reach
And just in time to enter on the shift report.
At twenty past nine we’ll make ourselves toast
And cluster in the servery.
We were the ones with the power to hold.
The power to make safe the danger.
Angling for leave under Section Three,
Dreaming of mealtimes outside Saint David’s.
We are the ones with the holding power.
Evans is our saver.
Evans is the bastard.
Drugtime Cowboy Joe
Wall to wall landscaping of the soul.
Always a rugged coast, salt-flecked but liveable.
Always a hero looking west,
Going on about the forward march of science.
You can have your sunsets cloudy bright,
Bright, bright to cloudy or extra bright
With cloudy intervals at intervals
And something special for that tickle
You can have them anyway you need.
But always numbing,
And always, everlastingly
To stand at the window, drinking the sunset down,
Tasting no rain.
Feeling the cracks in their spirit
Nutters get compulsory sunsets.
Always start writing back:
Wish we weren’t here.
They all smiled
But the drapes were down
Thirteen nutters seen this morning
Even the constitutional niceties
Sometimes wear thin.
She did not smile
Sat next to me
With Doc Martens boots on.
“We would get on much better, doctor,
If you didn’t keep interrupting him”.
There was a pause
The shifting of spines
A page in my history
We’re not mad we’re angry:
Mental Marching Band:
Brown Linoleum Green Lawns:
Peter Campbell 1949-2022
I’m a AMHP an a MH social worker in an Adult Mental Health Social Care Team we used to be integrated with Health but the Care Act led to a split We have average caseloads of 40 people the vast majority entitled to state benefits ESA and/or PIP an repeatedly they have to prove that entitlement again and again. All workers need to consider the impact this has on people, not only the financial impact but the stress of having to share their personal lives with the DWP It’s an essential part of our job including if you’re a CPN OT or Lead Professional to make sure you help with forms or get someone who will, write supporting letters an make sure people know they can put your contact details on.
Please don’t think of this as a favour, more as an essential part of your role and yes nag the Consultant or GP to do their bit. I’ve never had a DWP worker complain there’s too much evidence. And to appeal perhaps to the selfish side of things. A person been denied benefits can easily lead to a crisis giving you more work an your organisation more costs We’re lucky enough to have a great CAB worker but they are overwhelmed but resources are online to make sure people get the points they need and deserve.
5 Ways To Help
By Tony Roberts. Former RMN and Public Health Specialist @FosterChangeUK
I used to work as a MH nurse for a CMHT. Occasionally, some patients were re-referred or dropped into crisis for an unknown reason. I had a colleague who always dismissively suggested that it was “just because their benefits are up for review”. Their cynical hypothesis was that the patient was manufacturing a “crisis” for the purpose of getting their benefits renewed. Once this objective was achieved, the patient “wouldn’t be seen again for two years” Our response, therefore, should be to ignore said “crisis” (air quotes were a common thing for this colleague). We should refuse to assist or write a letter, because that would be rewarding and perpetuating their manipulative behaviour.
I don’t think this is an uncommon view in MH services. It is a failure to see how much our mental health (and I do mean for all of us) hinges precariously on our financial stability. Some of us fortunately have a wider tolerance for financial upset – we may have savings, a generous credit limit or others we can lean on for help. But for many patients of mental health services – especially those dependent on welfare – this tolerance is a knife edge. Any slight change to their finances can have a catastrophic impact on their ability to live a humane and decent life. And it’s not hard to see why, if we choose to spend a few minutes thinking less cynically than my former colleague. Paying rent and bills is a pretty non negotiable chunk of income. From what is left, we have to prioritise. Hopefully, there is enough left to eat healthily, be able to get into town, heat the house when it’s cold, visit friends and relatives, watch some TV, have phone credit, get to appointments, and do things that make our lives more enjoyable – maybe odd treat, rewarding activities or a Netflix subscription.
But what if that financial stability is threatened by the Brown Envelope of Doom? What do we cut back? Do we downgrade our food? Cancel Netflix? Walk into town in the rain? Stop seeing the people we love? All the things that keep us well are under threat. And some people don’t even have those luxuries to cut back on. Reduced income threatens the essentials – bills, rent – risking eviction, arrears, homelessness. The stress of a benefit review cannot be underestimated. They threaten everything a patient has. Their entire life.
But what can we, as MH professionals do about it? Easy. Here are 5 things:
1 – Spend a few minutes of your time familiarising yourself with the DWP and review process.
2 -Talk to patients about their very real concerns. Find ways to mitigate the potential impact, help to take some of the distress from the process by planning contingencies.
3 – Talk to colleagues who know more than you – social workers, welfare rights etc who can give you and the patient advice.
4 – Offer to assist the patient through the process. It is hard enough to navigate as it is, without all the additional stress it causes. Give patients some spoons and take some of the load off them.
5 – Unlike my former colleague, write that letter of support. DWP letters often ask specifically about things like diagnosis, treatment, medical opinion etc. You may have views about the “validity” of such “constructs” That’s fine. But now is NOT the time for your philosophical views on psychiatry. Now is the time to sign a letter that means your patient won’t starve, be isolated, cold or desperate. Save your philosophy for Twitter. Sign the letter.
by Jenni Ajderian @jajderian
When was the last time you read the Terms and Conditions? Even as a calm, educated adult, before posting your little jokes on Twitter, you probably didn’t bother to read through the legalese of the Ts&Cs. Children are even less likely to, and legally can’t consent to certain things even if they do read the small print.
The mental health crisis text line Shout recently shared their conversation data with researchers from Imperial College London. The scientists used Machine Learning algorithms to read conversations, label them, and extract information about the conversations, the volunteers, and the texters themselves. As a text-only service, Shout is advertised to children as much as adults, and receives generous funding from the royal family, among others.
Crisis lines are essential front-line mental health services. Texters are looking for immediate help with their mental health, and having a confidential conversation can be the difference between life and death. How Shout and its parent organisation, Mental Health Innovations, choose to treat their texters is essentially up to them, but this latest piece of research comes with a few important questions: is sharing conversations useful? Is it legal? Is it moral?
The researchers used text from the conversations, with names and locations removed, to figure out how to improve the service for future texters. This is a noble aim, but it’s not clear that the research paper actually achieves this. After having a human read and label over 8,000 individual text messages, and training a machine to do the same, the researchers found that texters who say “I am 12” are probably 12. Likewise, those who mention “autism” and “trans” are probably autistic and trans, respectively. These findings are good enough for a research paper, but are they ground-breaking and insightful enough to justify sharing thousands of conversations that were supposed to be confidential?
On the legal question, we turned to Dr Sam Wrigley, LLD, post-doctoral researcher at the University of Helsinki, who focuses on information law and privacy issues. When an organisation processes your personal data, they have to comply with the UK General Data Protection Regulation (the GDPR) and the Data Protection Act. Under the GDPR (for both the UK’s version and the original EU law), consent needs to be a “freely given, specific, informed and unambiguous indication of the data subject’s wishes”.
“Data transfers can also be justified in other ways,” explains Dr Wrigley: organisations can also have a ‘legitimate interest’ in processing your data. “If a controller (the person processing the personal data) can show that their legitimate interest (e.g. developing a better language recognition system) is not overridden by the data subject’s interests and fundamental rights or freedoms (e.g. their need or desire to keep their messages confidential, particularly given the sensitive nature of the material), then the processing could be justified under that ground”.
So if there’s a good enough reason for processing the data, you don’t necessarily need consent (though this gets messier when ‘special category personal data’ is involved). But even with a legitimate interest, the law requires would-be data controllers to tell their data subjects what’s happening, and encourages them to consider questions like “if you had asked them at the time, would the data subject have agreed?” and “does the data subject have a reasonable expectation for the data to be used like this?”
In this case, the ‘data subject’ could well be a calm, educated adult, well-versed in the complexities of GDPR and the different ways their data could be used. Or the data subject could be a scared twelve-year-old who just needs some help. They are younger than the internet itself, and aren’t legally old enough to use Instagram. The researchers used survey data to find anyone under the age of thirteen in their dataset, and then looked specifically at those conversations.
“Guidance on the use of consent also states that controllers should take extra care when asking for consent from children or other vulnerable people, which would certainly apply here.” Dr Wrigley adds, “At the very least, the age of the service users should raise real questions about how consent should be used in a particular case.”
Considering this complexity, the researchers could have simply removed those conversations from their dataset, but they decided that reading, labelling and analysing them was justifiable for their aims.
The scared twelve-year old didn’t read through the 6,000 words of legal text. They aren’t considering how their conversation might be used in three years’ time- they just need help now. Schools and GP services regularly recommend Shout to children. When you’re in the midst of a mental health crisis, a conversation like this could save your life.
“The GDPR is also very strong on the idea that we should only use personal data if it is actually necessary,” Dr Wrigley explains. “Rather than an ‘all or nothing’ situation, we should be able to say yes to some things and no to others (at least if it’s actually possible to split things up in this way). In particular, we can look at whether a controller made their provision of a service conditional on a data subject consenting to something that is unnecessary for the provision of that service. Consent given under such circumstances may be found to have not been freely given, and may therefore be invalid”.
This leads us to the moral question. The research paper itself notes that “Language-based deficits are common symptoms of mental health crises”. This implies that anyone, child or adult, is less able to understand and therefore consent to a 6,000-word set of conditions when they’re in the grips of a mental health crisis. It can be hard to put a sentence together, let alone read a legally-binding document. But that’s exactly what we’re expected to do.
When was the last time you read the Ts&Cs? Can’t we expect organisations to respect our privacy when we ask for help? Any barrier between help and the scared twelve-year-old could prove deadly. Is building a dataset for researchers at Imperial more important than providing people with help on the worst night of their lives?
Usually, when we skip the Ts&Cs, it’s because we can guess what they’ll say. In the case of mental health crisis lines, we might expect things like “don’t spam; don’t abuse our volunteers; we won’t sell your data”. When discussing social media, you might hear the phrase “if the product is free, you are the product”. Facebook and Instagram are free to you because advertisers pay for your data. The technology industry is always hungry for data, and we often pay with information for access to silly photos and online quizzes. Should we really have to pay with our data in order to get vital mental health support?
The title of that Imperial research paper is ‘Listening to Mental Health Crisis Needs at Scale’. Our needs include confidentiality, respect, clarity and trust in services. But researchers can’t listen to our needs if they don’t ask the question.
How a happy philosophy may be out of step with survivor experiences
I write as a supporter of the voluntary and charitable sector in Mental Health. Many survivors prefer voluntary sector services to formal services. Voluntary sector services are often more culturally attuned and user led. Their services are more understanding of different personal identities and equalities. They do not have powers to section, medicate or control. The voluntary sector is there when statutory services discharge long-term service users due to overwhelming demand from new referrals. There are numerous examples of truly user led and compassionate services including Self-Injury Support, Leeds User Led Crisis Service, Speak Up CIC and local Hearing Voices Groups. NSUN lead the way in capacity building and championing user voices.
There is direct action on social media led by coalitions of survivors, for example, the Stop SIM campaign, Recovery in the Bin (RITB) and Revolution LXP. Social action involves risk and courage for involved activists, many of whom will avoid public recognition because of danger to their jobs or benefits status if retaliatory actions are taken by authorities. I am not an activist and cannot do justice to grass roots and voluntary sector groups. This article is not meant to criticise the hard and underpaid work in this diverse sector but to provoke thought about how services need to listen to the needs of their recipients.
I want to focus on the apparent happiness mandate from many local mental health charities. It is likely the positive directive is linked to outcome measures and the hoops jumped through for statutory funding. The now complete shift to outcomes reporting is in line with the Recovery agenda. In most cases, survivors have not developed the measures to evidence their expected successful journeys. It is difficult for voluntary sector groups to seek funding for core services when money may only be available for new projects. Ongoing users may be a hindrance to outcomes linked funding, which prefers those who can move on after six months preferably to independence and employment. Demand for services is hitting charities, as it does relentlessly for statutory services, but practice in the voluntary sector starts to mirror the time-limited Recovery framework which RITB has campaigned against.
Before lockdown I visited a ‘crisis café’ occasionally. The ‘café’ would not admit people unless they were willing to fill in a paper questionnaire about how they were feeling and what led to their visit. At the end of the visit another questionnaire on the back of the form meant self-assessing how you felt after, and what services you avoided using that day due to the ‘café.’ I used to wonder how anyone in crisis could be expected to fill in two questionnaires. A one to one chat, limited to 15 minutes, was their sole service offer for three hours twice a week.
I fill in questionnaires over the phone every month when I speak to an employment adviser from a voluntary sector organisation. Regular reviews involve questions like whether I feel loved, have energy, feel useful and am showing an interest in other people. The questionnaire is a no argument condition of receiving support. I do not care at all if the score has gone up or down. It is difficult to give ‘real’ answers in case you lose the service if it is viewed not to work. You have a relationship with the worker who asks the questions which means you answer in a generous way.
Charities in the mental health voluntary sector adapted during the pandemic with online and phone support. A Zoom call cannot truly replace the chance to meet peers socially or share a meal. Many service users cannot afford the internet. The continued gap between meeting up and virtual help appears to have put more emphasis on social media messaging. Charities direct their time into social media pages which reflect positivity and wellbeing promotions.
My local charity’s facebook page publishes poetry most of which does not relate to mental health experience. There is a new Feel Good Friday poster on there every week. Positive cod psychology sentiments such as “happiness is not by chance but by choice” and “you do not find the happy life, YOU MAKE IT” are posted for likes. During lockdown another local charity encouraged sharing photos from ‘wellbeing walks’ despite the fact that exercise was limited by law.
Most social media posts from charities are about ‘reaching out’, asking for help or looking out for positives. It makes sense to try to keep spirits up but may feel invalidating to those who are bereaved or on low incomes. Happiness is at odds with the times we have been living through and it can feel infantilising and that we should be unaware of a world beyond our own ability to be mindful.
The messaging can feel false, as survivors we know that there is no help even if you do ask it unless you can pay for private therapy. This applies mostly where you have a long history of mental health problems and are ‘known to services’ which say they have done all they can. To repeat this ‘ask for help’ message is insensitive when organisations should learn from our rejections.
Where the voluntary sector promotes ‘wellbeing’ to the exclusion of recognising distress, there will be former members, perhaps those most in need, who disengage. Even before the pandemic, charities had moved away from social drop-ins. All groups must be labelled peer support though the needs of individuals in the group will be varied and negative discussion frowned upon. At the now virtual crisis café, it would not have been possible to mention my self-harm to other visitors, despite this being the reason I was there. Entry to voluntary sector support involves signing up to activity such as pottery classes, creative writing, art or cookery. It can feel like an Occupational Health department when these existed on psych wards decades ago.
Overall, no-one asked service users nationally if they either wanted to move to the activity model or go it alone. Choice was taken away from us. It can already feel as though you are ‘other’ in a society where people have partners, homes owned outright, children, education and jobs you missed out on from being distressed. Charities could exacerbate this sense of ‘other’ and social exclusion unless they respond to their members who continue to experience severe distress. In an unattainable happy community, there is no space for those who feel despair. This atmosphere drives distress underground, so it is more likely someone could turn to darker parts of the internet such as ‘suicide forums’.
Mental health experiences may not resolve and medication can lead to side effects which are a secondary impairment in themselves. We need safe spaces to talk about how these real issues affect us. Most of us know about the five ways to wellbeing or local walks so can try these in our own time if we find them of any benefit. When voluntary sector services are open, we need to be heard. I think of palliative care available to those with life-limiting conditions and the philosophy that helps patients to make the most of what life is left. Adopting palliative care approaches to those with ‘chronic’ and long-term suffering makes sense far more than flippant “don’t worry be happy” social media posts.
As survivors we need to talk to voluntary sector organisation managers and start discussions about how we reclaim the debate. We understand that funding is hard to secure and want this to change. There may be ways to still do the paperwork but have spaces which respond to what we really need. A group could still be called ‘women’s group’ but discuss living with traumatic stress. A ‘happiness group’ could be a cover for discussing what to do when we feel like we can never be content. We need to talk about iatrogenic damage. I have a diagnosis of Borderline Personality Disorder but have had to explain to charity workers what it means and why I reject it. There is a training need with many workers with posts low paid, unless they have their own experiences or learn from members. The voluntary sector should facilitate and not shy away from discussion which may not fit with a diagnostic manual.
It is already recognised that talking about suicide does not encourage someone to take their own life. If we start talking about realism then it is a relief and we do not have to be something we are not. It will not mean that we suddenly become negative and nihilistic. Individuals with mental health issues face huge challenges with poverty, loss, poor housing and unemployment. We cannot live in a Disney cartoon or pretend social injustice does not affect our peers.
The voluntary sector workers can help in practical ways, for example going with members to face to face benefit reviews or writing letters. They can get onto the mental health team which has rejected a referral again. They can listen without judgement and not set the agenda topic. Until we lower the volume of the happiness rhetoric our personal stories and needs are not being heard clearly.
This books covers a range of psychiatric abuses but is of particular interest for current service users in helping us know the history of how Nazis treated psychiatric patients and our survivor history of resistance and organising against psychiatric abuses.
Lapon was a militant activist beginning in 1978 with Mental Patients Liberation Front in Boston (MPLF) and the Alliance for the Liberation of Mental Patients in Philadelphia (ALMP), participating in organizing, demonstrations, civil disobedience, advocacy and writing. He was arrested on several occasions and completed a 60-day fast against psychiatric oppression.
Review by Sharon Jean Cretsinger, Tijuana, July tenth, twenty-twenty-one
I am happy to see that Mass Murderers in White Coats (1986) by Lenny Lapon is now in a digital edition. It is an impressive collection of essay and research that needs a much wider audience, especially now. While this book technically falls in the category of non-fiction, it is structured more like a doctoral thesis. This is not to say it is not eminently readable. The style is spare and intelligently rendered. I mention the overall construction of the book because the forwards and the appendices are important to the subject and should be read equally with the text. Lapon’s updated preface (May 2021) serves to contextualize its significance in historical place-time. He notes that the book is a kind of point-in-time look at the psychiatric inmates’ liberation movement. It was an important point in time because it was at almost exactly then that the radical and resistant arms of this movement were effectively (and perhaps intractably) broken by the government.
In the original preface, the book’s objectives are carefully laid out: to document the mass murder of “mental patients” by psychiatry in Nazi Germany and in the U.S (psychiatric genocide); to show common ideological roots of the killings in Nazi Germany and harmful, sometimes fatal, psychiatric “treatments” in the U.S.; to give the ex-inmate’s perspective on the oppressiveness of psychiatry, its violence and danger; to present excerpts from conversations with members of the American Psychiatric Association (APA) who are connected to Nazi Germany; to present a history of the organized resistance to psychiatry by its victims; and, to bring all of these issues into the light of public awareness.
The book achieves all stated objectives except for the last one. Hopefully, wider access to this digital text will help to publicly illuminate the pervasiveness of contemporary psychiatric atrocities and the almost-lost history of radical resistance to same.
Relevance to Intersectionality and Identity
In contemporary culture, there are emerging and increasing texts and discussions about marginalization and identity. Mass Murderers is important to this discussion because it clearly illuminates issues belonging to survivors of psychiatric atrocities. It reaches back to Nazi Germany and documents real conversations the author had with Nazi clinicians. This aspect of the book’s research is irreplaceable. Appendix 3, “The Myth and Politics of ‘Mental Retardation’” bears a special mention. This community remains one of the most oppressed in first-world cultures, with many individuals who carry this label still institutionalized and exploited for pennies a day in sheltered workshops. The fields of psychiatry and related behavioral health disciplines support the dynamic through large-scale drugging with psychiatric pharmaceuticals and various abusive and reductive behavioral “therapies”.
The author’s introduction makes the wealth of information presented in the text personal, and perhaps more importantly, relatable to “ordinary” folks. Psychiatric and behavioral health abuses and atrocities can literally happen to anyone. Yet, in the context of intersectionality, they happen more frequently to individuals who are otherwise marginalized such as people of color and those with disabilities. As these narratives become increasingly visible, the perspectives of ex-inmates and survivors are crucial to this body of work, but often missing. Mass Murderers is so valuable because it subverts basically every authoritarian attempt to control the narrative of the atrocities discussed. The importance of proletariat scholarship in the narratives of the marginalized and the working-class cannot be over-emphasized. This book is a beautiful example.
Relevance to the Present-Day, Ex-Mental Patients’ Movement
Particularly relevant in the context of today’s “movement” is Appendix 2, titled “Alternative Therapies Criticized and the Role of ‘Mental Health’ Workers in the Fight Against Psychiatry”. When seen together with Appendix 5, “Psychiatric Inmates’ Liberation/Anti-psychiatry Groups*”, we find a comprehensive picture of a movement that barely exists today. In place of most of the liberation groups listed in Appendix 5, we have many government-funded and pseudo-clinical organizations. These “practitioners” and “non-profits” have replaced radical organizing groups with various “alternatives” ranging from the clearly self-pathologizing to complicated systems of contrived, facilitated communications such as the “Hearing Voices Network”, “Wellness Recovery and Action Plan (WRAP)”, and “Intentional Peer Support”. The rhetoric of revolution and abolition detailed in Appendix 2 has been co-opted and replaced with these various pseudo-clinical “interventions” and “positions” such as “peer supporter” and “case management aide”. Lapon states it quite simply in this appendix: “They make money off our pain and suffering. Some of them have ‘anti-psychiatry’ conferences and invite a token ex-inmate or two. As with other oppressed groups we buy into our oppression in various ways.”
Mass Murderers in White Coats is ostensibly a book for those interested in doing serious antipsychiatry organizing. These individuals may wish to go directly to the chapter five, “The Resistance: A History of the Psychiatric Inmates Liberation Movement” to find inspiration. There is also plenty for those who are interested in antipsychiatry and historic and contemporary psychiatric and behavioral health atrocities and their intersections with other forms of marginalization and discrimination. Hopefully, this e-book will offer resources to readers and researchers interested in antipsychiatry, its intersections, and adjacent aspects of historical and Holocaust scholarship.
StopSIM Coalition Consensus Statement relating to The High Intensity Network (HIN) and Serenity Integrating Mentoring (SIM), 21/04/21
We are a coalition of mental health service users and allies who have grave concerns about the rapid, widespread rollout of the High Intensity Network’s ‘Serenity Integrated Mentoring’ (SIM) intervention across NHS England. The intervention is designed for people who have not committed a crime, but are in contact with mental health services, are frequently at high risk of suicide and self harm and are deemed “high intensity users” of emergency services. Key intervention components include a co-ordinated withholding of potentially life saving treatment by multiple agencies (A&E, mental health, ambulance and police services) and, using SIM’s own words, the “coercive” approach of a police officer as an interventionist.
We call on NHS England to:
- Halt the rollout and delivery of SIM with immediate effect, as well as interventions operating under a different name, which are associated with the High Intensity Network (HIN).
- Conduct an independent review and evaluation of SIM in regards to its evidence base, safety, legality, ethics, governance and acceptability to service users.
- Respond to this statement within 7 days to communicate the actions taken by NHS England. Communications should be directed to email@example.com.
Our concerns about SIM relate to its evidence, legality (including GDPR, Human Rights and Safeguarding), aims, governance and ethics. Interventions or service models operating using SIM principles may be known by alternative names, however, for brevity, this statement equally applies to those services, interventions and models.
This is a preliminary consensus statement. We have been researching SIM and the HIN for a number of weeks in preparation for the release of a detailed and referenced statement. However, we are releasing this brief statement since becoming aware that, due to the hard and concerted effort of service users, survivors and allies over many weeks – and in some instances, years – that high level conversations have been prompted. We felt it was critical to make our position public as soon as possible. A longer version of this statement, with citations, is shortly forthcoming.
We expect to be involved in any high level conversations concerning the High Intensity Network and SIM as a coalition of service users and allies. We can be contacted by email at firstname.lastname@example.org or via Twitter DM: @StopSIMMH. We will be publishing further updates on our Twitter account.
In solidarity with survivors, service users and allies who have worked tirelessly to shine a light on injustice,
The #StopSim Coalition
Sir Simon Stevens, CEO – NHS England Lord David Prior, Chair – NHS England, Claire Murdoch, National Mental Health Director – NHS England, Martin Hewitt, Chair – National Police Chiefs’ Council, Sir Tom Winsor, Her Majesty’s Inspectorate of Constabulary and Fire and Rescue Service.