It was clapping for the NHS that made me realise I had trauma

dark image with light making a silhouette of a face in profile. Photo by Engin Akyurt:

I think it was clapping for the NHS that made me realise I had trauma.

In hindsight of course I knew that what I’d been through was traumatic but I also minimised it, the memories were blurry, and the real stonker – it saved my life therefore I wasn’t allowed to wish it hadn’t happened, that would be wishing I was dead.

That’s the thing about mental health services and sections, they operate crudely, bluntly, they come in too late and too harshly but, by the skin of their teeth, they sometimes just about manage to do the job to the bare minimum standard and because of that remain just out of reach for the full force of a survivor’s anger. 

Or that’s how it is for me.

I care deeply about the provision of free-at-point-of-use healthcare, I would never want my critiques out of context to detract from that and I most certainly don’t see the rise in private day patient programmes as the solution.

Two of the leading of these private services are lead by the two psychiatrists I’m talking about.

I was in and out of hospital for a few years age 16-21 but it’s the final, adult admission that was so much worse than any other. The hospital had a reputation, I knew before I went in that it would be better to be literally anywhere else, but illness and geography meant I didn’t have a choice. 

As soon as I was admitted I begged to be transferred but patient choice was long ago thrown out the window for a sectioned psychiatric patient. It wasn’t until I read my notes years later that I really understood CCG’s and the funding backdrop.

Anosognosia is a key symptom of anorexia. You can see your weight going down, your intake going down, your behaviours damaging your relationships, life falling apart before your eyes and your mood plummeting, any rationality blurring and fragmenting and yet somehow believe that it’s not that big a deal, other people are making it a big deal, you will change, you can sort it out, if only you can find the right brand of yoghurt, if only it can be fixed by having an additional chocolate bar and slice of toast.

“I don’t need to be inpatient, just give me another change, I increased my meal plan by 100 kcal, I am better off at home” she says, weighing something ridiculous (I’m not going to say my weight, but if someone reading this is going to trigger themselves I’m sure they already know what a sectionable weight means). 

So yes I was a risk to myself, had no insight or understanding of the risks of starvation and wasn’t going to consent to medical monitoring or take the action required to stabilise my risk. In the face of that, psychiatry, as well as my mother, contend that “for your own good” you need to be in hospital.

To this day I have no idea how to feel about this? Would I have died? Would I have found my own way through? Who would I be today if what happened next hadn’t had to happen? What would it mean to me if what happened didn’t have to happen, I guess I tell myself it had to be this way because of how painful it is to imagine a world that’s not so cruel. 

Where hospitals places of care and restoration, nurturance and healing and not lunatic asylums by any other name, an extension of a carceral system, a place to lock away the undesirables, to delineate madness from sanity, to punish those who don’t conform and who scare the rest of them.

Anyway, I remember how scared I was when I realised the ward was locked. That I, specifically, was locked on the ward. That legally I was not allowed to leave. Legally I had no agency anymore. I was clinically determined unable to make decisions about my care, I was a risk to myself and couldn’t be trusted.

Other patients, voluntary admissions, could in theory leave, but in practice we were now all locked into this corridor of 20 beds, a meeting room, two dining rooms, two bathrooms, a kitchen and a central sofa and tv, seemingly sitting in the middle of the corridor but theoretically a communal space where we had to eat evening snack infront of a cooking show in the vortex of what happens when all the anorexias form a force field around which we orbited, getting closer and closer to that food-obsessed centrifuge.

The days were bleak. Usually waiting on tenderhooks to argue with a psychiatrist or dietician about how terrifying treatment was, how uninvolved in care planning we were, having to make desperate pleas and pitches to ward round to have leave requests or meal plans discussed and, when they did show up which they seemed to schedule with casual contempt for “I’ll see you tomorrow” agreements, hours or days later to be told you had less leave than you’d asked for, no meal plan change allowed, sorry we know best, sorry you can’t cope I guess you’ll just have to keep not coping whilst also not being allowed any freedom or social contact that might give you the means and strength to carry on, oh you’re jogging in your room now? Why would you do that? You must be causing trouble, not complying, do you want to be here forever? If you keep doing that you won’t get any leave at all.

You see, despite being sectioned on the basis of having no capacity to understand your own risk and behaviour, you are now going to be scolded, castigated, bullied, punished and have it held over you that you engage in behaviours that aren’t “helpful” or conducive to the goals we’ve set for you (“recovery”) or the goals you’ve set yourself (getting the fuck out of here asap).

Most of the trauma was in that contempt: 

Being held down to be nasogastrically fed and whilst a nurse sneered “what did you think would happen”. 

The transgression: I didn’t butter my toast and believed the feed would just constitute the calories of the butter, not the whole meal.

Being laughed at when I insisted not eating animals was a moral tenet and not a restrictive one – the implication, barely concealed, that an “anorexic” having ethics was risible. 

I was broken by the stripping away of any identity, any interests, anything I had found my self worth in being dismissed as “illness”, any assertiveness about who I was and what mattered was obviously “the illness talking” and “now is not really the time to care about that, you don’t have those choices”.

The euphemisms in my notes state “had to be constantly reminded to sit down, which she refused to do until further staff intervention” – my memory tells me this involves being pushed into a chair, held down, sat on.

The most visceral memory: kicking and screaming and being held down by 4 nurses whilst a 5th passed an NG tube. Pleading to be allowed to just drink the fucking supplement, that it should be offered to me for drinking and being restrained instead.

In a sickening, disorientating disappointment, when I got the stack of notes from the 9 months I spent in this hospital, this incident wasn’t mentioned. 

I was sure restraints would be documented by my guess is that a bit of  “manhandling” – pushing young emaciated women around – wasn’t classed as restraint.

Then there was the vicarious trauma of hearing everyone else’s cries, the woman who fought back and got taken to the general psychiatric ward “until you’ve calmed down”, the women who were in and out of that ward every few months, the woman who had been there for a few years, the woman who died on leave and being told that it wasn’t really our business to be furious with the psychiatrists for not protecting her, or maybe contributing to making her life unliveable.

I was given therapy whilst on the ward, 14 sessions documented in great detail in my notes by a therapist whose stance confounds me. She found me, “defiant… confrontational…challenging…hostile…resentful…attacking… aggressive…. defensive…aloof…contemptuous”. 

It didn’t seem to occur to her that the walls I put up protected me from the contempt of the staff, the disempowerment of the ward, the endless torture of having to face your greatest fear 6 times a day, deal with your mental illness and intrustive thoughts in every gap, be scolded for being ill in the place that is supposed to be knowledgeable about your illness, that you might, I don’t know, maybe be a bit cross about it all? 

When I expressed distress about being on the ward, anger towards staff or other patients she encouraged me to get to know them or to take part in groups. She couldn’t hold space for me to process what was happening to or around me. And when I picked this up and didn’t bring it up again, she noted our relationship was improving. 

The final therapy session before I discharged myself I cried “like a very small child” about being granted less leave than I had requested, I felt “insulted and humiliated”. I cried the tears of a trapped, lost, desperate, dehumanised, humiliated, lonely young adult, and she asked me if I was not crying as I cried as a child when my mother left me to go to work.

It made me laugh that that was the last interaction we had. As if she hadn’t heard of Ockhams razor. Or the cigar that was in fact a cigar. I was crying because the hospital was a hellhole and I knew I was not getting or going to get better. Because I knew I was leaving more “’damaged” than I entered.

My belief is that in a state of malnutrition, a physiological famine trauma, whatever the cause, our nervous systems and limbic brain is picking up information in a primitive way. We absorb relational trauma in a similar way to childhood trauma because we are regressed to our basic survival functions as we were then. When we are met with harshness we don’t need to have had a neglectful caregiver to begin to demonstrate signs of neglect and abuse. 

I have had to spend so long arguing that I don’t have causative trauma preceding my anorexia. I have trauma caused BY the anorexia, and more so its treatment that happened to save my life and caused the refeeding syndrome it was meant to protect me from, that managed to end the revolving door and be my final admission.

By making the experience so awful that I discharged myself from inpatients and then outpatients and then when I relapsed never sought help and put my family through so much having to cope with me on their own as we muddled through it until I galvanised myself to address this independently. 

Sometimes when I see eating disorder campaigns calling for better access to services it makes me so sad and angry, I don’t want more people to go through what I did. We need life saving interventions and anyone who needs their life saved, at whatever weight or stage these illnesses have made their lives unbearable.

But until services are not premised on a punitive ethos, to negatively condition anorexia sufferers out of the illness, I want to urge people to be careful what you wish for. Despite the layers of denial and the cognitive impairments to insight, we do know the illness no longer protects us from pain and instead causes it, we don’t need a hospitalisation driven by the desire to tell us “look where your silly little thin-fixation leads you, let this be a lesson not to lose too much weight”.

No amount of awareness raising seems to have changed the underlying assumption that madness = badness.

I feel like I should be caveating what I write with an endless stream of self-awareness. I know that I was distressed, anosognosic, rude, loud, difficult, non-compliant, disruptive, violent, symptomatic and in danger. I know that these interventions were in response to that and yet I still found them traumatising. I am not writing to present a solution – I don’t know what could or should have been done instead within the constraints on the system and the situation – my visioning for a future ideal would be a completely different system from the ground up.

The prevailing paradigm in mental health is punishment – giving the excuse as “institutionalisation”, the aim of eating disorder wards is to be so awful you keep yourself well enough to stay out. Despite many people requiring repeated admissions, the paradigm remains the same and staff admonish you get “get out and stay out”. 

This is somewhat effective, I had three admissions, my third being the most horrific and that experience did motivate me to “stay out” although it meant I was left unwell and without support, too afraid and hurt to engage with services but unable to take care of myself.

It’s not overwork or bad apples that make staff cruel – of course most staff are exhausted and underpaid and some get into the job because they like power over vulnerable people, but that focus distracts from the fact that institutions are set up to dehumanise mad people, a strange mix of infantilisation (you don’t know what’s good for you, I have the power) and chastisement (why are you doing that?). You are non-compliant, resistant, you need to be trained to not get attention for your bad behaviour.

Something has to overcome the cognitive dissonance of a person sectioned, and therefore deemed not to have decision making capacity due to illness, who is then castigated for behaviours (symptoms) and treated as attention seeking, troublesome, wilfully sick, who thinks she’s special, who should take responsibility

It seems that some of this comes from not understanding mental illness, even well meaning staff ask “why are you doing this to yourself”, “why don’t you want to comply and get out” as if they don’t understand the reason people are on the ward.

Alongside punishment, or a sub-category of it, is coercion and threat, most admissions are forced or coerced, wards are locked (I don’t know why I was surprised but realising the ward was locked was a horrible shock to me) and compliance is gained with threat of worse treatment. On an eating disorders ward the ultimate threat for distress was transfer to the general psychiatric ward which occasionally patients would disappear to for 24 hours to be sedated.

Units are protected by invisibility, although OTs, dieticians, social workers and psychotherapy came onto the ward, the team was permanent and complicit. No external professionals were coming in or asking questions. Psychotherapy was particularly complicit – criticisms of the ward were psychoanalysed away from their material reality – I was told I should “get to know” other patients, “find things in common” and “get involved in activities” when I told of bullying, abuse, screams of distress, competition and loneliness. An episode of extreme distress at not being granted leave or given reasons was related to “not getting what you want” and she asked “is this like when your mum left you to go to work”.

Dehumanising patients also involved mocking us – for me my veganism was mocked (although veganism presents a conundrum in eating disorder services, and should be examined and possibly challenged, laughing at someone telling you they care about animals as if it’s not possible to have both ethics and anorexia, as if every belief is a symptom is mocking and cruel) as well as compulsive exercise (yes watching someone jog on the spot and then try to avoid detection is humourously pathetic, I know it’s a bleakly funny sight, but laughing outright at a persons distressed compulsions is also cruel).

Diet culture is endemic in ED services and a lot of comments showing anti-fat bias get made – whether about gaining “too much too fast”, determining a maintenance plan at a conservative BMI, telling patients they “won’t get fat” and so on. 

I’m going round in circles here but to reiterate – dehumanising patients looked like, being mocked, being threatened (with transfer, section, tube feeding, restraint, losing leave), being endlessly reminded I was on a section and my consent was not required for tube feeding, being excluded from care planning and having unreliable, irregular meetings with the psychiatrist, being manhandled (although I remember being restrained, this remains completely undocumented in my notes. I can only conclude that it didn’t need to be written down as it wasn’t a formal restraint, just the pushing around and holding down an underweight young women who didn’t require much force to be overpowered), being shown a lack of compassion or any acknowledgement that my behaviours were a symptom and not a conscious choice or measure of my character.

A word to finish on nursing observations, 1:1 observations, on the toilet, in the shower – where your showers are timed for being too long, your bowel habits are commented on and, with new policy, nurses will wear body cams – is humiliating. It is predicated on humiliation because if you do exercise or purge whilst being observed you will either just be told “don’t do that” or restrained but mainly the threat is that if you do behaviours you won’t come off observations so the primary threat is the continuation of the humiliation and the admission and lack of leave, independence or autonomy. At no point is recovery or wellbeing mentioned.

It’s incredibly painful to speak about what happens on these locked wards. I was ill and vulnerable and left the hospital more ill and more vulnerable, at a higher weight but traumatised.

Because of this “access to services” is not what I want Beat to be asking for; services need to be transformed. I also don’t want “Accommodations for autistic patients” or any other small accommodations that make treatment less worse, not least because these won’t be applied because no one wants to make the experience less traumatising in case patients “like it” and “feel safe and cared for” and become “institutionalised”. I think this is more or less a straw man, most people want their liberty, most people who prefer hospital to independence is because of how bad life is outside not how great hospital is inside. Of course both repeated/long term admissions and proper supported living would make you a “drain on the state”, hence the system we have now. Until the idea that treatment must be horrible to prevent relapse, rather than effective is shaken then I cannot bring myself to ask for crumbs.

I believe many suicides attributed to the illness are a response to the “treatment”. Facing your worst fear 6 times a day every day under threat and coercion with little support or compassion, possibly brutally with restraint and tubes – not wanting to live whilst experiencing that every day? Yeah, I felt like that too.

It’s not much use saving someone’s life if they leave with so much trauma they don’t want to live it 

I can’t remember where I found this quote but it was written: “The treatment of AN, the violence, the behaviour modification, EDUs, who services decide to let die or forced to live”.

A section and enforced inpatient stay including force-feeding with a naso-gastric tube did in fact save my life. I am ambivalent about that. I am not uncomplicatedly grateful. I will criticise the clinicians, the institution and the system. I am still here.

I am actually now a therapist and that just makes me more critical, I can understand why decisions are made and things are said because I know the prevailing beliefs both psychoanalytically and psychiatrically and institutionally in the NHS. None of this makes it OK.

I don’t actually want to see a world where no one has anorexia, it’s an illness that is like 80% genetic in cause and has been around and documented for many hundreds of years and possibly has always been within human genetic diversity. Arguing for eliminating it would be eugenicist. I want us to be held, supported, fed and allowed to explore a meaningful life without being subjected to violence and correction.

I don’t want to see my experiences “formulated” – the diagnosis of anorexia nervosa is very accurate for me, it describes most of the compulsions, fears and delusions I experience accurately, when I experience them very intensely I say “I don’t feel well” because I see them as symptoms of a chronic illness, I do not agree that “madness is a sane response to an insane world” in my life – I have a brain that was predisposed to, and then developed, an incredibly strong fear or food. 

It’s kind of just bad luck, but it’s also who I am so I don’t see it firmly as good/bad although it certainly makes my life quite difficult, now I live with it and manage the trauma I endured in its “treatment”.

The DIM US framework

By Shaun @SGV_UK

I was feeling traumatised this morning and needed an outlet for my experiences. So I have created my alternative “Recovery in the Bin” framework that attempts to mirror the realities compared to the CHIME Framework for personal recovery. I call it the DIM US framework #RITB.


Image Text
CHIME Framework for personal recovery
Having good relationships and being connected to other people in positive ways.
Hope & Optimism
Having hope and optimism that recovery is possible and relationships that support this.
Regaining a positive sense of self and identity and overcoming stigma.
Living a meaningful and purposeful life, as defined by the person (not others)
Having control over life, focusing on strengths, and taking personal responsibility.

DIM US Framework for a “Recovery in the Bin”
The state of being deprived of a right or privilege.
Characterised by poor access to social programmes, no adjustments for a disability in employment, not being listened to by people in authority etc..
Impermanence & Faith
All things undergo change including life to death and powerful to powerless. Suffering is not permanent.
Characterised by a change in new leaders in authority, Change in ideologies, salvation in an afterlife etc..
A false statement of a material fact made by one party on another.
Characterised by the belief that one is lazy, of immoral character and commits social sins. E.g. Stigma
The state of being useful, profitable and beneficial.
Characterised by peoples values only measured by their economic utility. E.g. Someone is worthless because they do not work.
The action of bringing someone or something under domination or control. Characterised by removing or creating barriers to social programmes such as access to housing, income, health services or food to control an individual’s behaviour.

A Tribute to Nick Dilworth

Nick Dilworth died unexpectedly in January after an accidental head injury. This is not right, it is not fair and the world is a much worse place without Nick being in it. But the world is often wrong and unfair, Nick knew this so very well and because he was a truly great and good man, he dedicated his life to fighting against this unfairness and wrongdoing. Nick was a friend, an ally of disabled people, and had nerves and principles of steel, he did not back down. When many ignored what went on in the world social security and the department of work and pension and disability benefits, Nick remained a steadfast combatant, I don’t know how many lives he saved, but undoubtedly, he saved many. And for those who passed, he never forgot, he extracted justice for the families. There were no riches or status in this work, that is how we know he was a good man, he did it because it was right, he did it because he was our ally. The world is poorer without him. 

As a measure of the man, on announcing his death on social media there has been now for many days a series of reactions, sympathies expressed and shock sadness and praise for his work and life. It was often on social media where his detailed in-depth articles were shared, where he drilled into the deep statistical information and exposed government lies and obfuscation. On one memorable occasional he proved that a well-known journalist was mathematically illiterate and was promulgating a statistical lie in support of the government, of course the hack blocked Nick and kept lying, but the whole world saw how corruption and lies are how murderous state policy is excused by the cowardly. 

Nick was also a very kind and caring man privately, all the finest attributes of a gentleman and none of the nonsense. That he could come across as an upper-class legal expert was a great asset to campaigns, where so many had dismissed victims as working class scroungers, Nick speaking alongside us meant our message was heard by people who otherwise would have switched off. He was funny and could be wickedly scandalous with his humour, which fitted well with the gallows humour often needed to cope with the obscenities being perpetrated by the British state on disabled people living in poverty. Make no mistake we are targeted for democide, and when we fought back Nick was right there on the front line with us. No one is gone from the world while there are people alive to remember them with love.

The service will be on Friday March 3rd at Marldon St John the Baptist Parish Church, starting at 2.30. Donations should go to Cancer Research. This is being facilitated by the Funeral Directors:

Online at or sent care of:

Kim Palmer,
Funeral Director,
Stockman & Loram Funeral Service,
19 Holwell Road,

We don’t know everyone who knew Nick, so if you knew him, admired his work or were helped by him, please continue to write this tribute to Nick by commenting or adding a message when you share it on social media.

Through the Glass Doors

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.



Living in survival mode and decision making

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 Collapse Of NHS Dentistry

Giger’s alien 3 monster drawing but with shiny nice teeth

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.

A Tribute to Peter Campbell 1949-2022

Peter Campbell (photograph by Hilary Porter)

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,
Peter Campbell”

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.

Health Act

Hold me.

Hold me.

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

Nutters get 

Compulsory sunsets.

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

Of psychosis.

You can have them anyway you need.

But always numbing,

Perpetually numbing,

And always, everlastingly


Nutters get

To stand at the window, drinking the sunset down,

Tasting no rain.

Feeling the cracks in their spirit

Silt up.

Nutters get compulsory sunsets.

Always start writing back:

Wish we weren’t here.

Crisis Advocate

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


In black

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

Turning irreversibly


We’re not mad we’re angry:

Mental Marching Band:

Brown Linoleum Green Lawns:

Studymore entry
Peter Campbell 1949-2022

Mental Health Professionals Need To Help People With DWP Processes To Save Lives

By @444blackcat

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.

Shout About Your Data Rights

Photo by RODNAE Productions from Pexels

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”. 

So does MHI legally have consent to share your data? Kind of- they send you a link to their Terms and Conditions when you first contact Shout. But these Ts&Cs, and the related Privacy Policy, are nearly 6,000 words long. A related Frequently Asked Question page, far easier to read, assured texters that “individual conversations cannot and will not ever be shared”. But this was changed in late 2021, shortly before the research paper from Imperial was published. Rather than conversations only ever being shared in aggregated form, it now says that Shout is free to share individual messages with researchers, as long as they can justify doing so.

“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”. 

MHI could help the scared twelve-year-old without storing their data, analysing it, and sending it on to researchers at Imperial. But they chose not to. Instead, the scared twelve-year-old is forced to either agree to be a part of some undefined research that they don’t understand, or go without help. The Privacy Policy clearly states that “if you don’t agree to the Terms you may not use the Service”.

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.

You can read about the DPA 2018 here, and the GDPR 2016 here. The Information Commissioner’s Office (the UK’s data protection authority) explains GDPR here and consent rules here.