Trusted?

I guess I should be glad I saw the locum doctor. This supremely disinterested man who hadn’t bothered to read my notes before seeing me, even though I’d given the receptionist a detailed description of what I needed to discuss. If it wasn’t for him desperately trying to play catch up he might not have blurted out the wrongful diagnosis recorded on his screen.

I say wrongful (mainly because it doesn’t fit with my experience) but it might be what the Community Mental Health Team believe is wrong with me. Which perhaps would be fine if they had bothered to discuss it with me. Except they didn’t. Ever. The letter the locum quoted from was written a year ago.

I asked the doctor to print me a copy of it which to his credit he instantly did. On this letter they spelt my name incorrectly and later on referred to the psychiatrist being willing to see “David” again as necessary. Now I appreciate my middle name is David but bearing in mind the mess with my first name I think it unlikely they were covering all the bases.

I don’t want to go in the specifics of the purported diagnosis. It’s in the personality disorder spectrum and it’s fair to say that if it’s right I should more properly be being treated by the well known local hospital of Broadmoor rather than trying to re-access the secondary care functions of my local trust. However what it raises is the spectre of me explaining to a doctor that it’s incorrect and them seeing that disagreement with the diagnosis as a manifestation of the disorder, that I’m trying to manipulate their thinking. More rationally I know it could be a cut and paste mistake, after all, who is this David chap referred to in my letter? Either way it’s distressing and confusing.

At the root of this all is one word – trust. To quote the number one definition at dictionary.com “reliance on the integrity, strength, ability, surety, etc., of a person or thing; confidence“. So at a time when I can’t trust my own mind, the very people entrusted to look after me, so much so that their organisation is called a “Foundation Trust” have either confused several patient records, wrongly diagnosed me, or correctly diagnosed me and failed to treat me appropriately. It brings to mind the old mental health joke – “Just because you’re paranoid and delusional, doesn’t mean the government isn’t out to get you”. 

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Silent scream

When I finished my therapy in the summer I was told that I would be reviewed at six months and if I had any problem before that I should get in touch with the Complex Needs team.

Which is why I called them before the six months were up.

I went through various questions to establish whether I was “at risk” or “in crisis” – answer no, not in the specific way that they define those terms. I was promised a call back inside a week to let me know a way ahead.

Today my therapist called. Apparently no matter what I was told in June, the rules have changed. Which means we have to start all over again. I have to go back to the GP, get a referral to the Complex Needs team and take my place in the queue – current waiting time, 6 months. Which is what they said last time and it took 16 months.

The best that I can be offered at the moment is “stepped care”, some Cognitive Behavioural Therapy perhaps. Except that after so many years with my condition I’m already hyper aware of the signs and symptoms. I can articulate when I’m starting to struggle and I’m aware of the self care I need to take – which means I would take up a place that someone else would benefit from, someone less able to cope. Yet again I’m caught between not being unwell enough to require crisis care whilst being well enough to function in the world at a much reduced rate.

And let’s be clear, I’m not as unwell as many. I have no psychotic symptoms and I’m not self harming. I’m able to rationally discuss the dark feelings I have in my head. However I’m also aware of beginning to jumble words when I’m speaking. Of becoming more forgetful and detached from my thought processes. I’m acutely aware of the anxiety building in me. The challenge is to work out whether I’m going down to depression or up to hypomania, not least because I’m increasingly irritable and intolerant. My mood fluctuates between burning rage and quiet weeping. The fact that I’m able to relate this calmly counts against me.

ScreamAs we finish the call I can hear in the therapists voice that they are hating being the bearer of such news. I know they feel I need more help, they told me so back in June when they had to encourage me to try some months of coping on my own. I can hear the helplessness in their voice as the silent scream rises in my throat. I choke it down and thank them for calling. I say “see you soon” even though we both know I won’t.

 

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Bob-a-job

It was interesting a few weeks ago to run a Mental Health First Aid course where many of the delegates were researchers, in fact some of them had worked on data which we use in the course. With that sort of audience we could really dig down in to the statistics and examine what was going on. I produced my headline that 4 out of 10 employers would not consider recruiting someone with a declared mental health condition.* (Which compares rather unfavourably with the 6 out of 10 who would employ someone with a physical disability).

We threw some ideas around about why that might be. Worries about high levels of sickness absence, safety risks and even the difficulty of workplace adjustments came up as potential reasons why companies may shy away from employing someone with a mental health condition. So nothing particularly different from a physical health diagnosis……

Imagine the following scenario. You have a CV in front of you. It’s from a guy called Bob who wants a job.

Bob has really varied experience, he’s a generalist business operations sort of guy. Worked in some interesting roles covering the Facilities Management / HR / Health and Safety roles in SME’s. He’s obviously a really good troubleshooter, he’s even attached some references which say glowing things about him. He looks to be a self starter and energetic. You can see from a recent placement that he can hit the ground running and effect change in a short space of time – not least because one of his references says so. He can do a bit of everything and maybe this lack of a specialism is what is counting against him as you note he’s not had a full time role for a while.

Then you look a little deeper. There are a couple of gaps in his CV. They seem a little more frequent than the average lapse time between roles. You wonder why that might be. He hasn’t written “sabbatical” and he hasn’t used the time to study more though he has done some travelling. So you move on. You’re bound to find someone lower down the pile of applications.

Which means that Bob remains on benefits. Depending on which newspaper you read he could be a scrounger or a victim of austerity. Except he is neither. He has Bipolar II. A “severe and enduring condition” which he has managed pretty well for much of his life. The gaps are times when he needed care and treatment. Those gaps in the CV have reduced over the years as he understands his illness and the triggers better. In fact, at times his energy and focus have been the reason why he has been successful. He now knows what sort of management he needs in order to get the best out of him but he just can’t get an interview – and this is even before disclosing his condition.

Would that change your mind? Would you pull his CV out of the discard pile and give him a chance?

If so then please drop me a line. You see “Bob” is real (though I changed his name).

Full disclosure, I don’t know Bob beyond a quick Skype call. He’s a friend of a friend. That mutual friend saw him in action on his last placement and is sad that their organisation can’t give him a full time role. I can’t vouch for him in any way beyond fully understanding his predicament as it is one I faced myself. I trust that your recruitment process will find out all you need to make a decision.

IMG_0467-1.JPG If you know someone in the London area who is willing to look beyond the basics of a CV, who has a business operations role that they need to interview for then please send them in my direction. Christmas is coming and I know a guy for whom that job could make all the difference. Please help me find Bob a job.

 

 

*Department of Health 2009

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Reversed polarity

I finished the resilience training and the delegate came over to talk to me. They admitted that they had been resistant to attending the course assuming that it would all be platitudes and not relevant to them. As we dug deeper it seemed that because I had disclosed a mental health condition that made me more acceptable to them as I “got it” and so they were willing to listen.

I was reminded of this exchange yesterday when I was involved in two very different experiences in the world of Mental Health (MH) advocacy. First off was the furore surrounding the new Samaritans radar app. Now honestly I don’t wish to get in to a debate around the efficacy or design of the app. Let’s just say I have my reservations about an app which reports my troubles to a possibly unconnected 3rd party about who I have no idea. I watched the MH community erupt with a list of valid and important concerns. Feeling I needed time to reflect I didn’t contribute to the conversation at that time.

Later on I attended an event organised by Action for Happiness. The guest speakers were Richard Layard and David Clark, both acknowledged experts in the field of “happiness” and the provision of MH care. Layard is an economist and Clark a psychologist. (Which is to rather understate their relevant qualifications). Suffice to say that both have made a clear and recognisable contribution to government policy and provision in this field. They both spoke well with much to provoke thought and debate. Then came questions. In general the discourse was well conducted and useful (a few excursions in to climate change and neoliberalism aside). I certainly took away fresh knowledge and information I can use in my MH First Aid training delivery.

On boarding the train I decided to open up twitter and see where the Samaritans radar app conversation had got to. What was emerging was a received wisdom that the app was evil, dangerous and that Samaritans could not possibly have spoken to people who understand such matters – be they technological, medical or social. (Let’s call them group A). However I also noted that there were voices who wanted to see where the app went, who could see a broad value in the idea even if the details needed ironing out. There were fewer of these voices but I noted that some of the charities were keeping an open mind about it. (Let’s call these group B).

However I saw those open to a broader debate were being drowned out. Fair enough you might say, a majority verdict. Sadly though when I looked deeper I saw something altogether more sinister. I saw some of group A suggesting that group B obviously didn’t “get it” and that perhaps if Group B had more followers they would better understand the “real” risks. I saw Group A people talk disparagingly about “normals” who have no idea what it is like for “mentals” and so should just stay out of the debate. So much for parity of esteem and that’s just within the MH community!

My advocacy work centres around getting “normals” (or as I like to call them, “people”) to understand my challenges, the struggles that many “mentals” (or as I also like to call them, “people”) like me face on a daily basis. It doesn’t lead with the message “sod off and leave me alone because you couldn’t possibly understand just how crap my life is”. It took me 20 years to speak openly about my difficulties and a good part of that courage was about beginning to talk to people who I thought wouldn’t understand or care about me if they knew the truth. Did those people get it wrong? Yes. Were they clumsy and awkward? Yes. Did most of them at least try to understand and / or help? Yes.

Which is better than no one helping me.

acceptance_full_400Please don’t misunderstand me. This is not a post about the radar app. It’s not a post about the event I went to. This is a post asking for increased understanding – because you know what? There actually aren’t two sides to this. There are those directly affected by MH challenges and those who have yet to be affected. It may not be them who is affected, it may be a friend, a colleague or a relative but none of us will make it through our lives without coming across someone fighting these battles. How we approach these conversations is crucial to this.

Oh and that person I mentioned at the top of this post? I went on to coach them. In time they decided that why they had listened to me was because I obviously seemed to care about my subject matter and the people in the room. That was the difference – not my diagnosis.

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Tasting the bitter edge of my tears

I’m not a trainer by trade, I’ve always been an operator who got asked to do a little delivery when they were short handed in L&D. A subject matter expert I suppose you’d call it.

Similarly I didn’t set out to become self employed, I couldn’t find work and decided to parlay all the qualifications I had acquired in to some sort of portfolio career.

I got asked last week whether I liked the route my business had taken, more and more work delivering in the area of mental health. I struggled to answer the question – after all, I’m a subject matter expert to some degree and it allows me to deploy many of the skills and qualifications I have developed over my career. For sure it’s important work and I’m glad of the chance to help others develop fresh understanding and insights.

However it’s also emotionally draining. Take last week for example. I normally deliver Mental Health First Aid with Charlotte but she is currently very unwell. Luckily our mutual friend Andy stepped in to help me out. He’s a great guy and it was our first chance to actually deliver together but it was mixed emotions straight away. It’s a long two days and I want to give it everything I have as this is all the mental health training that most delegates will ever get. This means that inevitably breaks are shortened as delegates want to ask supplementary questions or confide in you about how they are doing.

Whilst the course covers many conditions I have no direct experience in, talking about the challenges for others inevitably makes me reflect on my own health and the struggles of those close to me. I try to bring as much of myself as possible – to make it “authentic” as the current jargon has it but that comes at a cost. On Friday I found myself churning inside, struggling to talk of earlier battles around self harm. I spent much of the day on the verge of tears, holding them back whilst continuing to share. It wasn’t a comfortable day.

When all is said and done I’m proud of the job I do. It’s worthwhile work and similar to my previous career in public service I think the output will help others. I just wish it hurt a little less.

 

Posted in Mental Health, Work | 9 Comments

Thoughts become things

My thoughts are slippery, tricky things. Ideas come and go across my mind all the time. In clinical terms my thought patterns are described as “Knight’s move” thinking (after the chess piece), me, I tend to describe it as having a butterfly brain. It can be infuriating for others and yet also leads to insights and connections that would escape me otherwise. All in all I generally consider it one of the better parts of having a mental health condition.

A number of months ago I was co-facilitating a day where we were mapping a process. In order to bring the map to life I gave each team a Lego minifigure to move around their emerging design. I noticed that people spoke more openly and confidently when they placed the figure and that everyone wanted to have a “go” with it. Which got me thinking……..

I’ve been refining some of the work I do. I never meant to move in to mental health training but it seems an inevitable side effect of coming out so I’ve embraced it. Time and again I’ve found that people devour the rich content of say Mental Health First Aid but still struggle with how to break down the stigma or challenge the discrimination. Which got me thinking……..

Mental Health is a complex, confusing and contradictory subject. Symptoms can be significantly different for two people with an identical diagnosis. Yet so often when we are portrayed in the media the accompanying image is the standard “headclutcher” picture. It’s universal and comes in all different colours, creeds, abilities, sexualities. Which got me thinking……..

Most people have a way they see themselves, a persona, an archetype. Perhaps a role they see that they fulfil in the world. Similarly in organisations, people get pigeonholed by colleagues, by their boss. It’s not all of who they are but it represents some version of some truth even if it’s not rooted in fact. Which got me thinking……..

As you can tell, I do a lot of thinking. Some would say I overthink (it’s a fair cop). I also do quite a bit of talking and so I took my series of ideas away with me when I went to visit with friends and colleagues. Chances are that if we’ve spoken in the last few months then you’ve unwittingly contributed a piece to what I’m building, helped me construct a better version. These conversations have happened in diverse places – in Royal Colleges, at kitchen tables, over a beer, out on a bike, on long walks. They’ve been both virtual and real, in England, Scotland and the USA. To all of you – thank you.

Today I’m launching a new twitter feed and website to highlight everyday stigma and discrimination. You’ll find content via @Mental_Blocks and replicated on the website www.thementalblocks.com. Using Lego figures I am going to tell a story about how stigma and discrimination affects people. There will be several new images a week and the narrative will build, adding new characters and situations as it goes. Whilst I’m starting with a workplace narrative there will be a chance for people to suggest directions for the story or if they have specific issues they wish to see explored then I hope to be able to accommodate that too. Over time this will build in to a compelling resource highlighting good workplace practice but it won’t always be comfortable reading. My hope is that the fun and approachable nature of the Lego figures will enable anyone, from any community, to engage with the messages I am sharing.

Which brings me to my final point. Aside from all the friends who have helped I also have a co-creator. That person prefers to remain anonymous currently. Not least because of the risk of potential stigma and discrimination they may face if their involvement became public. Which is what The Mental Blocks is aiming to change…… Please follow, tweet and retweet the images widely. RSS the blog, share the links with friends and colleagues. By all means download the images and use them as starting points for conversations. All I ask is that you credit us and comment on the blog when things are useful for you.

 

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Three little words

As a guy who is endlessly curious about the world, one of the great joys of working for myself is the sheer variety of organisations I get to visit. I’ve blogged before about working with organisations with a real sense of heart, living by their values and trust me, it’s a real joy when you work with companies that are clear about what they stand for.

Last week I was at The National Archives at Kew. I’ve done a variety of things there, mainly around Mental Health and we were having a catch up meeting when one of the attendees gave me a copy of the in house magazine so that I could see what people had said about workshops I delivered. However, I was transfixed by the front cover – it had an address from the new “Keeper” (Chief Executive in modern parlance but they still also use the historical title). He was really clear about what he expected from people in the organisation and also what he would do to support that. Even more than that though my eyes were drawn to the values they espouse.

“Integrity, Possibilities, People”

I want to break down what intrigued me about each word.

Integrity – I guess this is fairly self explanatory but it’s interesting that it’s the first value. Absolutely clear from the start. I presume there is something about the factual nature of the work they do there which puts a heavy expectation on the ability to be correct and truthful. They hold all our records after all. During my work with the organisation though it’s been clear to me that integrity is very much apparent in the way they’ve dealt with me, even simple things like paying invoices have been done well.

Possibilities – This was one which may surprise you. As an organisation devoted to historical record the archives are actually very forward looking. They are keen to see new ways to connect and interpret their collection. They have regular “lunch and learn” sessions for staff on a wide variety of subjects. (Recently I was there on the same day as Lucy Worsley). They are also keen to connect the diversity of their knowledge with real world applications, changing how we think about the past and how that may inform the future in new and interesting ways. It reassures me that the civil service are so innovative.

People – Considering the records are in / on every conceivable type of recording device / medium – paper, canvas, audio, microfiche, computer records, photograph etc etc the archives are very aware that their work is about the people, for the people. I hear them talk with great affection about the general public who use their services. Case in point they don’t depersonalise them and use the term “service users” as so many government agencies do these days.

Internally, they are about collaboration and supporting each other but not in a stuffy way. A quote from their detailed values document “We do some serious stuff, and we do it seriously well. But it’s done a lot better when there’s a bit of laughter about.” – To give some sort of idea, their Intranet is called “Narnia”

I love that an organisation as complex as The National Archives can be really clear what it stands for. So simple and so elegant.

What would your three words be?

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