Back under Their spell

So here I am back dealing with Them. I’ve been almost entirely well now for five months and had honestly started to feel that I was completely in remission. A couple of months ago I reduced my dose of quetiapine quickly and easily from 750mg to 600mg with no mental or physical ill effects, so it is which shock and disappointment I find that I have not tolerated the drop from 600mg to 500mg well. In the two weeks since the reduction I have felt that I have been very mildly hypomanic for the first time since about March.

I kind of saw the potential for that; I have been taking on more work, and more exciting work, and I’ve been try to balance out the buzz by using PRN quetiapine and diazepam and taking things slowly and calmly when not working outside the home. It is, after all, genuinely exciting to be asked to speak at conferences or to have the opportunity to give a reading from my book. What I was not in any way expecting was a return to the kind of mild psychosis that for all its lack of severity makes me feel out of control. As I write this, it is Monday, and I’ve been feeling at the mercy of Them since Saturday. I’ve fallen right back into the bizarre system of beliefs I was having problems with last autumn; in a moment when I saw a single object I experienced as “sinister”, that belief system has gone from being something I’ve been able to describe in talks and training events with detachment to my present horrible reality.

The really interesting this about this system of belief is that while I am aware that I am generating it, that it is most likely a product of faulty dopamine levels, I feel very strongly that it has an independent existence. I do not create it; it is revealed to me. I feel like an archeologist who whilst looking for something fairly mundane – coins, perhaps –with one scrape of a trowel accidentally reveals a corner of something larger and far more intricate. Further work on the site exposes ever greater complexity until individual areas of tile begin to link together into one huge mosaic floor.

Each of my experiences with Them has, in the same way, fleshed out and consolidated my understanding of how the other dimension and its inhabitants operate. As my brain chemistry becomes more and more disordered I am more and more aware of the effect of aberrant salience, of the brain incorrectly identifying neutral things as standing out in importance (or being “salient”). Long before I had heard of this theory I used phrases such as “increased/distorted significance” because I recognised that at certain periods my brain would start to see things as specially important or significant, and as meant specifically for me, when they really, truly weren’t. In a mildly hypomanic, expansive mood these feel like benign “messages from the universe” that only I am equipped to decipher because I am special. A feather found in the park; a passage in a book opened at random; a beautiful harmony; all these can be positive sorts of message.

More frequently, however, the messages are sinister, frightening and “evidence” that I am in danger. Entirely neutral experiences and objects become messages sent for me to interpret, only the messages are always the same: We are out to get you, and we can, because you are powerless. As I become less and less well more and more things that anyone else would consider innocuous become not just suggestive of Their actions, but the presence of Them becomes the only explanation that in any way makes sense. For example, I went out to the shop earlier, to see if getting out of the flat was helpful, and when I came back I noticed the bedroom light was on. Instead of thinking, “Oops, I left the light on!” my initial, incredibly rapid interpretation was that there was someone in there. Equally rapidly, this was followed by the knowledge that no, there wasn’t anyone in there, but that They had put the light on in my absence specifically to make me think there was someone in there, to make me scared. Because They enjoy that. It genuinely felt like the most likely explanation.

The more experiences I have like this, the more of the picture is revealed and over the past couple of years it has built into the feeling that somewhere, in a dimension far, far away, beyond up or down or east or west, there are Beings, and the focus of these Beings is – me. I am entirely aware that this is both grandiose and ridiculous, but there it is. They may belong in another dimension, but They have tremendous reach into our own. This is fortunate for them as although They cannot manipulate me directly, They can use their reach to manipulate our world in a way that frightens and distresses me. It does not matter that I retain insight, that I “know” at a cognitive level that these things are not true, because I FEEL at a gut level that they are. And gut trumps cognition in terms of the speed at which it works, and in terms of its ability to instantly flood me with the hormones associated with being in the presence of threat. 

They can threaten me through:

Colours. As I fall under their spell I begin to develop a strong aversion to certain colours, to feel that they are risky or even downright dangerous. I begin to feel very strongly that I do not want to connect with the dangerous colours, and will go to lengths to avoid looking at and especially touching them. My choice of pens, clothes, folders becomes dictated by the aversion. Usually the problem is with reds, especially a dark or rusty red, but today it’s yellows, especially ochre. No idea why it’s changed, but it was bad enough today that to feel safe I had to change my Twitter page background.

Patterns and shapes. Especially dark shapes/patterns on a light background. Pointy shapes are the worst, say teardrops or triangles. I have had to get rid of clothes with this kind of pattern before now.

Using technology to trick, distress and thwart me; I’ve covered this a lot in previous posts but right now I’m having ideas about the smoke alarm in the hall (which I cannot move from room to room without passing) being some kind of camera.

Nature. I have relatively recently discovered that They are also hiding their purposes within natural artifacts, BUT letting me know that They are doing this, so that I find aspects of the natural world scary. Previously I was troubled by the idea that the wasps’ nest in my dad’s loft is a monitoring device. Over the weekend as we were driving through the beautiful Worcestershire and Herefordshire countryside I felt, and yes I DO know how bonkers this is thank you, that certain types of hedge were not the work of nature or gardeners, but the creation of THEM. I felt at risk even though I was in the car, because the purpose is never to directly harm me, it is to mess with me be letting me know that I am being observed. I couldn’t bear to look at the hedges, because they were scary; but closing my eyes was scarier, because it left me more vulnerable.

After just a few days of this I am emotionally exhausted; having your eye hook onto so very many “dangers” in the course of a day is just incredibly tiring. I’m also disappointed that I’m this unwell again and that I’ll have to go back up to the dose I dropped down from two weeks ago. But while this is in its early stages I do recognise that the sensible thing is to do whatever takes, go back up, use diazepam, contact my Consultant if necessary to get my appointment brought forward. Even after a couple of days getting out from under Their spell has become much more important than my pride. I cannot face the thought of getting worse.

Posted in Mental health, Mental health services | Tagged , , , , , , , , , , | 8 Comments

Don’t Read His Post If You Hate Fatphobia, Says Wil Wheaton

Originally posted on The Stretch For Something Beautiful:

I’m used to it every day I stand up for myself and people like me: body positive people are blind. They’re ignoring the health risks. Fat is ugly. Fat can be absolutely controlled. On and on and on. And usually, I’m able to let these things roll off my back, because I know that fat is often influenced strongly by genetics, that you can choose unhealthy foods the majority of the time and be stick-thin, and that you can eat healthily and exercise and be fat. I also know that the “health craze” of exercise and weight loss is ableist towards those that will never be healthy and never be able to do extensive exercise. All the “What’s your excuse?” comments in the world won’t change that for those people.

I support health at every size. I support doing what you personally have to do to feel good in your…

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A more accepting age? Why stigma is nowhere near a thing of the past


  1. fig. A mark of disgrace or infamy; a sign of severe censure or condemnation, regarded as impressed on a person or thing; a ‘brand’.

Example: 1882   J. H. Blunt Reformation Church of Eng. II. 172   Branded with the stigma of illegitimacy.

Oxford English Dictionary


I’m particularly lucky where stigma is concerned. Despite having had bipolar since early adolescence, generally I have not experienced much stigma and discrimination. Some of it is to do with how open I am (it’s harder for someone to attack you if anything they could potentially use against you is already out in the open) but some of it must just be pure lucky because almost everyone I know who has a mental health condition has experienced much worse stigma. I know people who have been turned down at interview or hounded out of jobs, people who rejected by friends and family, people verbally abused within their communities, people who have had their fitness as parents questioned – all because they had a mental health diagnosis.

How baffling it was, then, to read Elizabeth Day’s Observer article “Robin Williams and the talk of the ‘stigma’ of mental illness” over the weekend. It is Day’s contention that the concept of stigma has been massively oversold in discussion of the death of Robin Williams. “Is there a stigma?” she asks. “The very fact that the internet was abuzz with people sharing their own stories of depression and encouraging others to do the same suggests that, thankfully, we live in a more accepting age. Most of us will know of close friends or family members who have dealt with depression. Some of us, myself included, will have experienced a form of it ourselves…. As a result, I don’t view mental illness as a scary, strange thing or as a form of weakness. Do you? I doubt it.”

Well, here’s one thing, Elizabeth: if you’re bringing up your own mental health but you don’t specify what your experience has been, I can draw two conclusions from this: either your experiences were quite mild, not necessitating a diagnosis or specialist treatment (I suspect this is the case, since further down the article you conflate depression with mental health in general, as if the experience of people with depression is the same as the experience of people with schizoaffective disorder or dissociative identity disorder, in which case you’ve fallen into the age old trap of thinking that because you are “on the spectrum” this gives you insight into the whole thing, just as did Giles Fraser last year). Or you do have a diagnosis, but you’re scared of sharing it in a national newspaper. And that would be – well, the effect of stigma, you see.

I do have a diagnosis and I am willing to talk about it. And although it’s a severe mental health problem, my diagnosis – bipolar mood disorder – is viewed relatively positively by the public. And yet. And yet stigma is a thing, you see. It is very much a thing. How do I know this? Well, despite my celebrity-friendly diagnosis and my relentless determination not to be ashamed of who I am, I have had so very many experiences where I felt marked, felt branded as worthy of less kindness, less respect, less understanding, where I was made to feel one of “them”.

Hooray for you Elizabeth Day if you have never experienced serious mental illness or stigma. But to assume that everyone else, all these people sharing their concerns on social media, must just be wrong because it’s not been your personal experience – that’s like me as a white British woman stating that racism doesn’t actually exist, just because I’ve very rarely experienced it.


If there were no stigma…

…in the 1990s, I would not have felt that sick, hot shame and horror at having a classmate spit at me, “YOU have got some kind of personality disorder.” If there were no stigma a decade later, I would not have so felt marked out by reluctant to share the diagnosis of borderline personality traits I held for many years. Depression, that was one thing. Anxiety, well, I could tell people about that. But disclose that a consultant psychiatrist thought I had something wrong with my personality? No thanks.

…my university GP would not have looked me in the eye and said solemnly, “Are you sure you want to see a psychiatrist? I think you should, but you must know this means a… psychiatric file will be opened up on you.”

…I would have got cards and flowers when I left my last job because I was poorly. No one, not even the team members I directly managed, was ever told that I had been diagnosed with bipolar, nor even that I would not be coming back. I was simply disappeared.

…I would never tense up when hearing of a brutal murder, as I wait for the inevitable opinion on social media and in the comments sections (ahead, of course. of any detail) that the perpetrator must be “psychotic” or a “psycho”.

…I wouldn’t have felt sick with shame and anxiety about having to disclose my past history to a complete stranger to attempt to get health insurance or life insurance, would not have been horrified to have to recount much needed treatment in an open plan office.

…I wouldn’t think twice about applying for an ESTA visa to visit the United States.

…it wouldn’t feel like an issue to answer the question, “Oh dear, have you got a headache?” with, “Oh, no, actually I just need to take my antipsychotics.” I do it, because that’s what I do, I challenge by being quite matter of fact about my life. But I am aware of having to make the conversation matter of fact, having to plaster on a smile and count on being met with a kind response.

…I wouldn’t feel like I was crossing an invisible line of acceptability once I start talking about my persecutory delusions. No matter how safe the space, no matter how committed I am to sharing my story, I have to screw my courage to the sticking place to do this. Every time I do it, I worry about people finally realising I am much more mental than they ever thought, that the respect they had for me will diminish, that I will no longer be able to exercise authority.

…I would never see reputable newspapers misuse the word “psychotic” to mean intensely angry or lacking in empathy. I would never see them use the word “schizophrenic” to describe a schism in the government or the economy. I would never have to cringe at hearing the weather or somebody’s fickleness being described as “so bipolar”. There would be no need for guidance from Time to Change or the Samaritans about how to report mental health issues appropriately (guidelines that were widely ignored in the reporting of Williams’ death).

…I wouldn’t have cringed in my tube seat recently upon hearing a discussion about a man who was such “a nightmare” because he was “a manic depressive”.

…I wouldn’t have to hesitate over every job application before I tick the box marked “disabled” and note my diagnosis. My first meeting with every new line manager would not inevitably involve having to have “the talk”.

…I wouldn’t hate having to ask for my prescribed drugs by name in the pharmacy in case I am overheard.

…I wouldn’t have been written off as ineligible for jury service a few years ago, despite informing the Ministry of Justice that my job at the time was to write reports to advise Crown Court Judges on sentencing (the law has thankfully been changed on this point, but it took a lot of campaigning from the big mental health charities).

…it would feel just as normal to walk into a community mental health clinic or mental health inpatient unit as it does to walk into a GP surgery or an acute hospital outpatient department. It really, really doesn’t. 

…I wouldn’t feel like I have to preempt judgment about why my children don’t live with me full time to prevent assumptions that I have had them taken away by social services.

…I wouldn’t have to read newspaper articles that deny my community’s experience because our voice is considered trustworthy on our own lives.

Posted in Activism, Mental health, Politics and current affairs, Stigma and discrimination | Tagged , , , , , , , , , | 17 Comments

On seeking help

At twelve, I had a problem. Something was wrong with me. Something had descended upon me, out of the blue summer sky. In an instant I felt dreadful, weighed down, sick with something I couldn’t identify, that I felt in my body yet somehow knew to be of my mind. After a few days of carrying that weight around, I needed information. Instead of spending break with my friends I went up to the school library and selected a book on teenage health. I pulled out a few others, too, and spread them around; I didn’t want anyone to see what I was looking at. The book had a chapter on the mind with a checklist for something called “depression”. I ran my finger down the page, checking off symptoms. Yes. Yes, yes!

At the bottom of the page there was a statement I found very comforting. I don’t remember the exact wording, but it went something like this: depression is a real illness. It is not your fault and it is treatable. Speak to your parents or a doctor to get help. On reading it I felt weak with relief. It was real! The thing I didn’t have a name for, the thing I couldn’t describe was real and there was help available!

I took that book very much at its word. Perhaps as a result, where the topic of help for mental illness is concerned, I am a slow learner.

The first person I asked for help was my mum. “You’re depressed?” she said. “You father’s depressed. Everyone’s depressed!” She sounded overwhelmed, frustrated. I was shocked to hear that my father had depression. I’d no idea, and now that I knew my own problems seemed of little significance. I vowed to say no more about it, only I kept on having periods where I was depressed (I didn’t see my “funny” or “giddy” spells as a problem for many years to come) and it showed.

The next person I asked was a GP. I was told that at 13 – by which point I was already considering suicide – that it was normal for teens to be moody, but that I should see a counsellor. I didn’t like the way she always asked me how things “made me feel”. She didn’t listen when I tried to tell her that it wasn’t as simple as that, that sometimes everything would be awful but I would feel great for no reason, and vice versa. I saw another GP at 15, and was told it was all about my menstrual cycle, which didn’t seem right either. At 17 I saw a third GP, who prescribed beta-blockers and left me to it.

At 19, at university, I finally found a practice nurse and GP who listened. I described my experiences and they gently suggested that I might have manic depression and should see a psychiatrist. I was hugely relieved that someone was taking me seriously and I would finally get to see a specialist, someone who could really help me. I knew many people would be horrified or ashamed to be told they should see a psychiatrist, but I saw it positively. I wanted help, you see.

The psychiatrist sneered at me. He accused me of lying about my symptoms, of dropping red herrings into the conversation to mislead him. He insinuated that I drank too much (I was teetotal). He said that he didn’t think my fiancée was an acceptable partner for me. He stated that he “did not believe” in diagnoses. In order to flush out my lies about having “up” periods, he sent me off with a box of fluoxetine to see if I would go “as high as a kite”. I did, and yet he still refused to believe me. He twisted my words until I hardly understood the conversation any more and was almost screaming with frustration.

The experience was a profound shock. Discovering that the help available was worse than no help left me feeling more hopeless and despairing than ever. With the assistance of my course tutor I complained and was assigned a different psychiatrist, but by then I had lost trust in the system. Those two awful appointments were all it took. The new guy was nicer, and he did give me a diagnosis – bipolar, the new name for manic depression – but he offered only one course of action, a prescription for lithium. There was no conversation about what my diagnosis might mean for my life. There was no discussion of any other treatment options. Things weren’t as bad as with the first consultant, but I still wasn’t sure this help was actually…helpful. Scared of the litany of risks associated with lithium and wary by now of psychiatrists in general, I nodded and smiled then walked out of the door and never returned.

Next there was the emergency duty psychiatrist who told me she couldn’t admit me when actively suicidal, as I was the wrong type of person for her ward.

After that, there was the counsellor who was horrified by my manic antics, and showed it.

There was the Health Visitor who dismissed my high score on the Edinburgh Postnatal Depression Scale as being a result of my being “very self-aware”.

The parenting helpline volunteer who listened to my account of severe postnatal depression, a newborn with colic and a toddler with behavioural problems, and responded, “What did you think it would be like? Little House on the Prairie?”

There was the medical ward nurse who jeered at me as I cried in my hospital bed following an overdose.

The week after that overdose a Community Psychiatric Nurse came to my home. She asked me what I wanted and tutted when I didn’t know (how could I? I’d never met a CPN before). She said that I needed to understand hers was a service for people with serious mental health problems, so she wouldn’t be coming again.

There was the consultant psychiatrist who never once looked up from my notes and never once tried to progress things further than GP prescribing.

A clinical psychologist took me very seriously and made a recommendation I should receive therapy, but the team met and removed me from the waiting list without telling me.

There was the consultant psychiatrist who seemed nice and friendly but who changed my diagnosis without telling me, so I had to learn it from a copy of the letter from my GP.

There was the emergency duty registrar who kept answering her iPhone while I tried to explain my suicidal mixed mood and got my story all muddled.

Most recently, there has been the disappointment of the service offered by my Home Treatment Team, including another diagnosis-fiddler of a consultant and series of ever-changing nurses.

On every occasion I have engaged open-heartedly. Optimistically even, despite the fact that I am generally a glass-half-empty person. It seems that no matter what my experience is, I still cling to that belief that mental illnesses are real illnesses, that they are not my fault, and there is help out there. Every disappointment brings fresh hurt.

Why am I telling you this? Because today another celebrity with a mental illness (bipolar, no less) is reported as having taken his own life. In the surge of responses, people suffering from depression or having suicidal thoughts are urged to talk to someone. I’ve seen tweets going to so far as to offer assurance that someone will listen. As someone who’s frequently been suicidal, and as a Mental Health First Aid instructor, I would most certainly endorse the talk to someone message. But we need to be very careful about managing people’s expectations that help is available. I am one of the fortunate ones. I have a diagnosis. That diagnosis is considered serious enough that I have access to secondary care specialist psychiatric services. The vast majority of people who experience mental distress receive none of this interest from services, yet it still took me until I was 37 years of age to get help that actually…helped.

Yes, people can phone helplines. Yes, they can chat to peers online. But what then? What then for the person who doesn’t fit services’ criteria? What then for the person living in area where the appropriate service has been cut? What then for the person whose GP doesn’t believe them and won’t make a referral? What then for the person who waits months to see a psychologist or a psychiatrist and finds that they are unhelpful or oppressive, or their suggestions trite? These things happen to people every day.

I want people in distress or despair to talk. But who will be listening?



Posted in Activism, Mental health, Mental health services, Politics and current affairs | Tagged , , , , , , , , , | 38 Comments

In a heartbeat: I may be in remission, but I’m not in control

Let’s start with the positives. I am well. I am pretty much entirely free of bipolar symptoms, so I guess I am in “symptomatic remission”. I’ve yet to attain the dizzy heights of “functional remission” – I’m working more than I’ve done in a while, on amazing, meaningful projects like qualitative research into women’s medication choices in pregnancy and delivery of Mental Health First Aid, and I’m beginning to be paid more often for my speaking and writing. But I’m a long way away from being able to work full time the way that I used to, and to be honest I’m not sure if I’ll ever be able to do that again. I get ridiculously tired even after a single full day of work and for every day worked, I need at least another day to recuperate. But I am well.

Yet I’m so nervous. Despite three continuous months of wellness I can’t relax, I’m scared to enjoy remission. Because, you see, I did not “overcome” the episode. I haven’t “beaten” mental illness. I haven’t “managed” my way to wellness, whether by my own actions or via any intervention by the NHS. Remission has not occurred because of anything I or anyone else did. It was simply time, time for the tide to turn and the four-year episode to come to an end.

This is scary, because it means that no matter how many drugs I take or how many self-management plans I draw up, my bipolar is not “under control”. If anything, it remains in control of me. It may be dormant at the moment, but I can no more control it than a seismologist can control the movement of tectonic plates. Bipolar has gifted me spontaneous remission, so spontaneous that it literally happened in a heartbeat. I know some people won’t believe that’s possible, it’s the truth; one minute I was weighed down by depression, a depression that was generating very detailed and specific suicide plans. Then next – it was gone and I was free.

But if bipolar can be generous, it can just as easily turn on me again. Twice in my life I have had the opposite experience, that of depression descending impossibly suddenly before sticking around for months. My first ever depression happened in exactly this way. Aged only 12, I was jogging around a temporary athletics track marked out on the school playing fields when a hideous something came suddenly upon me. It was like a bird swooping down, vicious claws extended, and it changed my life forever. I did not understand what was happening, what was wrong with me, but later I pieced things together from a book in the school library and found a name for the heavy sadness I now had to carry around.

At 25 I had a unrecognised, undiagnosed hypomanic episode after the birth of my second child. A couple of weeks into the abnormal energy and excessive elation it vanished, once again in the space of a second or two, plunging me into an awful period of my life in which I struggled hugely to care for my own children. Another episode happened 18 months later when hypomania segued first into depression then into a mixed mood, culminating in a suicide attempt. Having done its very worst, bipolar then checked out again for no discernable reason, leaving me in peace for an astonishing eight years.

Sure, there have been episodes where hypomania or depression has come on gently, gradually, episodes where if I’d known then what I know now I could perhaps have intervened, at least in the very early stages. But there is no way to take remedial action for a change that happens in a heartbeat. There is no time to prepare, to get your plan together, your resources in place. I know I should be trying to live in the moment, take each day as it comes but I’m finding that really hard. The knowledge that bipolar giveth and bipolar taketh away is hanging heavily over me, giving my happiness an edge of anxiety. I am well, but I am not in control.

Posted in Mental health | Tagged , , , , , , , | 14 Comments

Ten ways to make service user participation more meaningful

I’ve been to a few events in past months as a patient/service user representative. Some events have had a specific mental health remit, others have looked at the wider NHS, but either way the focus has been on improving individuals’ treatment journeys. So why is it that some of these events have left me, the patient in the room, feeling like something of an afterthought?

I guess it all boils down to the fact that although the invitations were well-meaning, the organisers had not properly thought through what it would mean for someone with significant mental health problems to attend their event. In no way did I doubt the sincerity of contributors; some were positively evangelical about person-centred care. But “person-centred” shouldn’t be an ideological mantra, it should be something you practice daily, including making service user attendance fundamental to your events. Leading by example is important. If you don’t treat service users as central to your event, and visibly so, how can you expect the doctors and nurses and social workers and commissioners present to go away and practice what you have been preaching?

Here then are some practical suggestions for making sure that service users are central to your event, and not just an add-on to tick the patient participation box. I’m sure I haven’t thought of everything, and I hope others will comment. But if you are a health event organiser, paying attention to these 10 points will make your event much more easier and less scary to attend, and that  radically improve the quality of involvement service users are able to give.

1)   Think about the timings. The last event I attended started at 8.30am. Getting up and out of the door for 7.30am on extremely sedating medication was an unpleasant challenge. People who take psychotropic drugs tend to function best when they’ve had a chance to sleep of their “medication hangover”. 8.30am is also bad for anyone with some form of anxiety who struggles with rush hour crowds; again, fighting down panic simply to get to an event isn’t the best frame of mind from which to contribute effectively.

2)   Give us plenty of notice. Yes, we have mental health problems, but this doesn’t mean we have nothing going on in our lives. Short notice for events can make attendance difficult for those of us who have jobs, require childcare, have caring responsibilities or need to organise someone to support us in order to attend. 

3)   Think carefully about your venue. Try not to always hold your events in London, unless you only work with SUs from London and the southeast. Are you holding your event in a nice hotel or a plush conference suite? Try to see your venue through the eyes of somebody who hasn’t worked for a while and who might be subsisting on benefits. How does it look now – luxurious? Or over the top? Intimidating?

4)   Provide practical support for travel. Paying out for long distance train travel and then waiting for expenses to be paid can be impossible for people on low incomes. Could you arrange to buy tickets in advance and have them sent to us? Think too about the impact of additional hours of travel. Living with a mental health problem can be extremely fatiguing, and early starts or late finishes are difficult enough without hours of travel on top. For some people this can be best managed by being booked into a nearby hotel the night before an early start or the evening after a late finish.

5)   Facilitate connections. I’ve been to events where I knew nobody at all. That can be challenging enough for the most mentally well person, but when you factor in issues like low self-esteem, social anxiety, communication difficulties or low mood, expecting a SU to put themselves out among the crowd and network is unrealistic. Support measures don’t have to be difficult. Brief staff providing welcome packs and name badges to look out for SUs attending and give them an especially warm welcome. Identify someone who can act as a buddy and make some introductions to people who might have similar areas of interest. If the buddy sees us standing alone at coffee, s/he can check if we are OK and if necessary effect another introduction.

6)   Acknowledge our presence and publicly welcome us. I was at an event last week that was all about improving primary care mental health measures. I have absolutely no doubt from his presentation that the guy who opened proceedings wants to put SUs at the heart of care pathways. He’s the real deal. Yet when he listed the stakeholders present at the event, he ran out of groups to name-check before he got to service users. Making us feel like an afterthought undermines your credibility in the SU community.

7)   Large events can feel very overwhelming, and sometimes we might need to do things to manage our mental health (a quick meditation, swallowing our meds, phoning a partner or carer, breathing ourselves down from a panic attack) that we don’t particularly want to do with a hundred other people in the room. Sometimes, the content of an event can be unexpectedly triggering and the only way to avoid crying in public is to withdraw. This means a designated quiet space, even if it’s small, can be incredibly helpful. No one should have to use the toilets as a place to gather themselves before returning to the task. 

8)   Don’t expect us to be dressed like you, or to be comfortable around people dressed in suits or heels. Bear in mind that some SU activists have very negative experiences of power structures – not just mental health, but the DWP, education, criminal justice, etc – and their input is as important as that of the service user who communicates easily with doctors, NHS managers and commissioners. It’s your responsibility to draw people out and try to make them comfortable if they seem reticent or ill at ease, otherwise your opportunity to learn from them will be wasted.

9)   Keep jargon to a minimum, and where it must be used, spell out what you mean. I know it’s your daily bread and butter to talk about CQUINs and KPIs and clustering but these are “backroom” terms, and we don’t often get to see the workings of the backroom. Bandying them about with no explanation can make us feel as if we’ve been invited into the backroom, only to have the door shut in out faces at the last moment.

10)  Pay us something. We’re not usually expecting a huge consultancy fee, but remember that essentially that’s what we are when we come your event – consultants, who have given up a day or a half-day to share our experiences with you. Our experiences are valuable, or you wouldn’t have invited us, and so therefore is our time. Even if everyone else in the room is attending as part of another job role, they are still being paid and not paying SUs marks us out as of lesser importance than any other stakeholder group. If you want to know what might be considered reasonable, Mind and Rethink Mental Illness give activists £50 for a half day and £100 for a full day and tend to negotiate this rate on behalf of activists who are sourced through them. Do bear in mind, however, that even this small amount can cause problems for those of us on benefits; when on ESA I was only permitted to earn £20 per week and a £50 payment had to be given to me in three separate chunks over three weeks to avoid losing benefits. Consider offering flexibility in how you offer payment, for example high street vouchers rather than cash.

I’m really keen for others to come up with more ideas but in the interim, if you’re an event organiser: are you ready for the challenge of elevating service user involvement above the tick box and making it truly meaningful? I really hope so.



Posted in Activism, Mental health | Tagged , , , , , , | 18 Comments

My week in meds

I published my second ever blog today over on YouTube. It’s Inspired by “What a week of groceries looks like around the world”, which got me thinking about what a week of meds might look like if laid out in a similar way. The result: my week in meds.

Posted in Activism, Mental health, Mental health services | Tagged , , , , , , , , | 6 Comments