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 , , , , , , | 12 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.

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The tipping point

After a few “issue” posts I thought it was time for a more personal update. I am amazed to be able to say that my mood has now been pretty much stable for around ten weeks. This feels like an amazing gift; I am the most euthymic I’ve been since 2010. As a result I’ve been able to increase the amount of work I’ve been doing, especially in terms of delivering Mental Health First Aid and conducting research. My son is feeling better now the exam season is over. I’m enjoying the long summer days and looking forward to my holiday next month.

Yet not everything in my particular garden is rosy. The better I feel, and the longer the improvement continues, the less positive I feel my medication regime. Side effects that were distressing when I was unwell now feel completely insufferable, and I am anxious that my metabolism is now beginning to creak and groan under the weight of my antipsychotics. Metabolic syndrome was something I knew about in connection with atypical antipsychotics, yet I somehow thought could never happen to me. Now the stones of weight gain, my new “apple” shape, fluctuating cholesterol levels and new diagnosis of hypertension have me feeling that continuing on such high levels of antipsychotic is gambling with my long-term health.

My daily prescribed medication involves:

  • 750mg of quetiapine (the maximum my consultant would permit in the community)
  • 1.2g of lithium carbonate
  • A sachet or two of Movicol nightly, alongside 7.5mg senna, to treat the bowel problems caused by the quetiapine
  • 10mg lisinopril to treat the hypertension caused by the quetiapine.

The lisinopril has been something of a tipping point. I am used to taking meds for side effects of meds; now I have side effects from the meds I am taking for side effects of meds (still with me?). In addition to everything else going on, the lisinopril causes a persistent, tickly cough. A cough might not sound like much but it is a genuine problem for someone who makes a living from talking to people. It also seems symbolic of all the tail-chasing I do in trying to manage my condition.

I’m also back to struggling with the quetiapine itself. Now that my brain is calmer and there is less fizzing and popping for an antipsychotic to address, I feel more sedated than I have done in over a year. So I am simultaneously picking up more work that requires an early start, and feeling so drugged that an early start is extremely difficult. This is particularly dispiriting because it feels so very similar to how I felt when I first started on the Q three or so years ago.

I had an oh-so-sensible plan. I was going to wait until we came back from holiday (since holidays have a habit of destabilising me) in mid-August, by which time I hoped to have enjoyed normal mood for four months. I was then going to speak to my consultant about reducing the dose and work out the rate of tapering together. Only all of a sudden I simply cannot bear feeling so mentally fuzzy, cannot bear tiredness that is so all-consuming I could cry, that sees me give up on activities that are dear to me because it is so hard to wake up. I have lived though years and years of feeling this way due to depression, and I’m damned if I’m going to live with it now that I’m euthymic.

And so I’m taking a very small, very calculated risk. I could ring my psychiatrist and discuss it, but I’m being so cautious that it’s hard to know what he could find fault with. Instead of taking 750mg for the past two nights, I have taken 725mg (a reduction of 3%). There’s an additional change with this – 25mg tablets of quetiapine only come in standard release, as opposed to the extended release of the 300mg and 400mg pills I take. So the 25mg kicks in earlier, and leaves my system earlier. Yesterday I felt much brighter and perkier; today, however, I feel as sedated as ever, so maybe yesterday was just a placebo effect. Meh. Tomorrow night if all is well I’ll drop down to 700mg, ready for an early start on Thursday. If I feel unwell, either mentally or physically, I will go back up to the previous dose.

Why am I being so cautious? Because quetiapine withdrawal can be horrendous. I’ve heard what friends have been through, and I’ve read others’ blogs about the experience. I’m not in a hurry to get the drug out of my system and out of my life; I’m happy to stay on a maintenance dose if it feels helpful. But while quetiapine has for so long felt like an ally in the fight against my symptoms, it is now far more problematic than the bipolar itself. I’m simply not prepared to live my life in an antipsychotic haze. I want to feel euthymic and feel like me. I hope that’s not too much to ask.






Posted in Mental health, Mental health services | Tagged , , , , , , , , , , , , , , | 12 Comments

A bath, a brew and a benzo: is this what Home Treatment Teams have come to?

Last week a paper was published in The Lancet Psychiatry entitled ‘Safety of patients under the care of crisis resolution home treatment services in England: a retrospective analysis of suicide trends from 2003 to 2011.’ The authors, among them Professor Louis Appleby, former national director for Mental Health in England, found that average rate of suicides (14·6 per 10 000 episodes) under crisis care seemed higher than the average rate of suicide among psychiatric inpatients (8·8 per 10 000 admissions). Cue another much-needed discussion about Home Treatment Teams and what they can realistically offer.

I first heard of Home Treatment (aka Crisis Resolution) Teams several years ago and I thought the idea was fantastic. I am a big believer providing community services where possible, so I was all for the provision of intensive treatment at home instead of hospital admission. Yet by the time I agreed to Home Treatment earlier this year it was after months of resistance and was a reflection more of my utter desperation than any optimism about the service. Why? Because I so rarely heard anything good about HTTs and much of what I had heard was shocking. As I said to Professor Appleby on Twitter, “A child could dispense most of the ‘advice’ I have seen offered”. He called this “a serious criticism” of what was “meant to be a highly specialised acute service”, and indeed it was. Comparing the intention behind the setting up of HTTs with the current level of service provided to those in acute distress leads me to believe that the intention behind these teams has become very much lost in translation, perhaps dangerously so.

Let’s rewind to when these teams were originally developed. In 1998 the Sainsbury Centre for Mental Health produced a booklet sharing best practice based on the Northern Birmingham model for Home Treatment. The model involved a Team Manager, eight frontline nurses with varying degrees of seniority, two Approved Social Workers (or AHMPs as they are known these days), two unqualified Health Care Assistants, a part time Clinical Psychologist, and administrative support (what leaps out at me here is that the team contained no doctors).The aim of the team was to form a therapeutic bond with the client and relieve the burden on the service user’s family by providing both the individual and the family with “information, support, guidance and counselling”.

By 2001 the Department of Health’s Mental Health Policy Implementation Guide made it clear that HTTs should be established and that they should work only with “an acute psychiatric crisis of such severity that, without the involvement of a crisis resolution/home treatment team, hospitalisation would be necessary” – in other words as a direct alternative to hospitalisation. The focus would be on diffusing an individual’s crisis through assessment, planning, intervention and resolution. It was envisaged that intervention would be specific and intensive, potentially requiring “several visits a day” in the early phase, and would involve:

  • Immediate, 24 hour access to medication
  • Practical help with basics of daily living (such as help with benefits, housing, childcare, etc)
  • Family/carer support (including education and practical support)
  • Therapeutic input, including: problem solving; stress management; brief supportive counselling; help to maintain and improve social networks
  • Development of a relapse prevention plan and a crisis plan
  • Provision of respite care if needed.

I threw the issue of HTTs/CRTs open to my Twitter feed. I’m not pretending this is in any way “research”; I simply asked people to share their experiences. I’m not going to use anyone’s Twitter names as some people needed to remain anonymous so anonymity for everyone seemed the simplest way. A sizeable minority found their HTT invaluable and were full of praise; others found parts of the system helpful (e.g. the liked the HTT doctor but found the nursing input intrusive, disliking HTT practice but still preferring that to admission).

Overall, the message that stands out is that HTT is no longer delivering the intervention that was once at their heart. Nobody who responded mentioned help with benefits, with childcare or other practical support. All too often they reported being offered banal stop-gap measures, such as making a cup of tea or having a bath as a “distraction”. Little medication advice appears to have been offered beyond taking a prescribed benzodiazepine. Many people feel insulted by these suggestions; most people under HTTs are desperate and/or suicidal and, having worked through their own self-care options, are looking for much robust support and advice. But how could intervention along the lines of the original model be delivered if staff are ringing or visiting for just five minutes a day as individuals report? Another widespread concern is the large number of staff in teams. A service user may have a named lead worker, but this is of little use if they never see the same worker twice. For some people having to tell and retell their stories to different workers on different days increases their distress and the staffing “lucky dip” can make it impossible for therapeutic relationships to be formed.

Can HTTs still work in the current funding climate? Well, clearly some teams are getting it right in some areas. But they appear to be in the minority and the same problems are occurring up and down the country. “A brew, a bath and a benzo” is not intervention and without intervention people feel pinned in place rather than supported, monitored rather than helped. The purpose of the team seems to be little more than a method of ensuring service users are still alive. Little is done in practical terms to resolve the crisis so it can feel as if the team are playing a waiting game, keeping the individual on until they either require admission or spontaneously improve. The Lancet Psychiatry study concludes that, “the safety of individuals cared for by crisis resolution home treatment teams should be a priority for mental health services.” That can’t be done in five-minute consultations with little or no therapeutic value. I think we deserve better than that, and I believe that we deserve our “serious criticisms” to be noted.


The positives/mixed responses

“I found it easier to be honest with the HTT team about the severity of my symptoms.”

“Visited everyday Xmas Eve to New Year only contact I had with a person.”

“They were meant to come to an important appointment with me and forgot… but have also been excellent.”

“When I was unwell a crisis team visited me at home and it worked quite well. I would have hated hospital.”

“My HTT treatment in last 3 years HAS helped me stay at home so grateful for that, has varied, overall good, have most support.”


Brief encounters

A number of responders voices concerns about the short of time HTT staff spent with them and felt that this was risky practice:

“When I needed to be in hosp HTT weren’t a good option. I needed/wanted 24hr care. HTT we’re very brief telephone conversations or visits and I often felt them to be more disruptive than therapeutic. I just don’t see how as an alternative.”

“Name HTT sort of self evident, but no! One visit and then phone calls at odd times, presumably to see if still alive.”


Concerns about risk

“I’m not surprised the suicide rate is higher under HTT treatment. Not sure about risk management.”

“Having a 5 minute chat with someone every day is never going to provide the same level of safety or support as good inpatient treatment. I always think HTT treatment for someone suicidal is Russian roulette.”


Lack of understanding of diversity issues

“I was told by a member of the HTT that my problem was being gay… lost credibility after that!”

“Being told off for not turning the TV off quick enough when they came (struggled to get to control because of physical disability).

(From someone whose trauma issues meant she did not feel safe alone with a man) “I’ve been suicidal & they’ve said ‘Well we won’t be able to visit today because no female staff’.”


Lucky dip staffing

“HTT positives: if you get same people they know you a bit more and can make realistic suggestions. Negative: don’t get same people. They can’t keep you safe, only make sure you are still alive.”

“So many of them hard to stay consistent. Also, they see you once, twice and then every time just assume they know you…”

“The biggest problem for me with HTT was being seen by different people, sometimes twice in the same day, having to repeat my story over and over. I found this made things a lot worse, heightening my distress.”.


Banal advice

“It felt like an endless round of tea making. I did not feel supported like I did on the ward.”

“I was given the ‘try a hot bath’ advice even though I had tablets in my hand.”

“Benzos & tea or distractions a big thing with our useless local crisis team.”

“Tea is awful. As are all hot beverages. And baths trigger me something terrible. I’m ‘difficult’.”


Having to be the “right kind of patient” and access the service in the “right kind of way”

“You have to fit in with their model – no flexibility. Out of hours response dismal – told to go to A&E or call emergency service.”

“Having what was actually bothering me completely ignored because it didn’t fit with ‘usual’ issues to name a few. Seriously, last time I was in crisis, took an OD, & hubby stayed up to make sure I was breathing as didn’t want HTT near me.”

“I found not being able to self refer a big problem.”

“I found they spent time only on what they wanted to discuss, and decided to reduce visits after day one. I was sectioned one week later.”

“In despair last weekend: called Mental Health, redirected. Called GP: closed. Called 111: told someone would call me. Received blocked call from MH nurse. She said someone would call me. >1h later blocked call from bad GP. Who then called back again & again. Called HTT on number GP gave and was told they would not speak to me, that I must call MH. Said I had, 8h earlier Told that I should go to Emergency Department. Said I could not. Had to find a way to say that I would find a way to be okay, or HTT would send police. Several days later, got to see my own psych. We discussed giving me “permission” to access HTT.”



Posted in Mental health, Mental health services, Research | Tagged , , , , , | 25 Comments

Jagged little pill: has the recovery narrative gone too far?

I feel that in writing this post, which has been brewing for a long time, I am saying something that some might see as controversial. So let me start by making something clear. This post is not intended to criticise the work of the big charities – I am a proud member of Mind and Rethink Mental Illness and have undertaken both paid and voluntary work for both organisations. I have also volunteered for Time to Change and made a TTC pledge at last year’s Mind Media Awards. A huge amount of good work is being done on a daily basis to challenge public perceptions of mental health and to normalise discussions of the topic. Time to Change is entirely right to highlight just how peculiar it is that mental health stigma continues to loom so large given that a quarter of the population is thought experience some form of mental distress.

In this quest to normalise the topic, to reduce fear around mental health and those who live with psychiatric diagnoses, a sanitised depiction of the lived experience of mental illness has emerged. Mental health education directed at “the public” (rather than at service users) has a new defining discourse that appears to be “I had an episode of [condition X] but I sought help and with the support of my family and my mates I’ve recovered and I’m back at work.” I feel that things have reached the stage that the story “people recover from mental illness” has overtaken the somewhat more accurate “many people can recover from mental illness”. The key goal in recovery seems to be to demonstrate that you are “fine” becoming socially and economically active again, by becoming your “old self”.

This is a model of mental distress as temporary, life-changing perhaps in the sense of making the individual seeing things differently – developing newfound empathy, for example, or a greater appreciation of their support network – but not fundamentally altering the individual’s perception of themselves. Indeed a number of recent anti-stigma media campaigns focus on people with mental health conditions being “just like you or me” or “still one of the lads”, i.e. not noticeably mentally ill and therefore not scary. It’s important that the individual is not seen as scary, because what the campaigns want colleagues or friends to do is to reach out, by having a chat by the water cooler or sending a text asking how they are doing in order to cope.

This is not my experience of mental illness.

I am extremely positive about early intervention, not just in psychosis, but in any mental illness. We should indeed be striving wherever possible to make an individual’s first episode of acute mental distress their only episode. I often ponder what my life would be like if I had first been effectively treated at 13 or 17 instead of 27. My son is having his first significant experience of anxiety and low mood and I am very pleased that my local CAMHS wants to give him the skills via CBT to manage his issues now, rather than waiting for them to become more entrenched before anything is done.

But like many other people in the mental health community, I am not going to completely recover. It’s just not going to happen. I’m not being negative; the research into patterns of people’s bipolar shows it is simply a fact. I may be entering a period of remission but I know with absolute certainty that I will relapse at some point, even if I’m 100% treatment compliant. And it’s no good portraying me as “just like anybody else”; much of the time of course I am, but there are times when I am not. There have been times when I have rocked back and forth on the bus because I was manic and trying to hold in the urge to run around the bus screaming. There have been very many times when I have cried in public, occasional times when I have had panic attacks outside. There are times when I believe things that I have had to keep to myself, because I know people will be almost as frightened by the fact that I have having persecutory “unshared beliefs” as I am by their content. And I’m ashamed of it, but when I am hypomanic I am not very good at keeping my temper. It’s rare, but I sometimes exhibit what services call “challenging behaviour” for this reason. And all that’s way before I even get to crisis point. Sometimes I will seem weird. Sometimes I know I seem scary. This is not my fault, so sometimes the Just Like You and Me model makes me feel a poor societal fit.

Just as it is no good saying I am “just like anyone else” it is hopeless to say that I am now “recovered” and can make a full return to the workplace. Even though my mood is now normal, that would all come crashing down if I had to suddenly return to the workplace (assuming I could get up and get there on max doses of bipolar meds). I fully understand that within organisations a full recovery is desirable; nobody wants to go through the process of long-term sick leave, employer or employee, and the ending of a contract due to any health problem is a huge deal. But I want a narrative that acknowledges that for people with severe and enduring mental illness long periods of mental ill-health  is the likely reality. That the issue should not be shoehorning us into a recovery that makes us fit for work again, but building enabling workplaces that support those of us for whom mental illness is a lifelong disability, rather than a one-off episode.

I feel like I have become the voice that responds to phrases like, “Most people will make a full recovery,” with a swift, “But even if they don’t, they still have skills and talents and value, and we shouldn’t waste that.” Sometimes doing so feels uncomfortable, even though I’m still advancing a recovery narrative, just one with a different view of recovery, that is more complex. It has some jagged edges, so it may be more difficult for the general public to swallow. But if the dominant discourse is allowed to become about the more palatable, sugar-coated “complete recovery”, it is shutting out those with long-term mental illness – yes, those with bipolar and schizophrenia and schizoaffective disorder, but also people with a diagnosis of personality disorder and those with disabling long-term anxiety disorders, eating disorders and recurrent depression. Pretty much anyone, then, that uses secondary mental health services.

I’m left trying to steer a middle course, one that is optimistic and doesn’t write off the possibility of recovery for many people. I want to communicate that positivity and hopeless when I deliver training or speak publicly about mental health. I am not suggesting for one moment that we chuck out the recovery narrative. But I want us to be real. I don’t want “the public” to have unrealistic expectations of me, or of my countless friends who also have no choice but to be in this for the long haul. Weird or maybe sometimes scary, this is who we are. I have to keep pushing this jagged little pill.


Posted in Activism, Mental health, Mental health services, Stigma and discrimination | Tagged , , , , , , , , , | 146 Comments


[TW: suicidal thoughts]

I found the early part of this year terrifying. During 2013 I had begun to feel that I had at least some level control over my mood state by using meds (tweaking the dose of my antipsychotic and/or adding in some diazepam) and self-management techniques (applying a structured intervention to take the heat out of developing highs). Switching from being mildly high most of the time to being deeply, deeply depressed was an unforeseen shock. Emerging from this into the most rapid cycling of my life was similarly unforeseen, as was its eventual resolution back into soul-destroying, death-seeking depression. I had no real idea of what was going on other than feeling that my life was, as I told my consultant, “untenable”. I was transformed from a person who had a high degree of confidence in her ability to self-manage to somebody who had no idea why her moods were behaving they were, nor a clue as to how to deal with them.

Then my mood lifted, again without warning, again with no apparent cause. I have hardly dared believe my luck as week after week has passed with my mood set to normal. With a little distance, I have begun to look back at what happened to me between Christmas and mid-April and it appalls me. I have been experiencing bipolar symptoms since early adolescence and have had my share of desperate depressions. But the depression and the rapid cycling of early 2014 were possibly the worst period I have ever endured. I can hardly bear to think back to that emotional pain that had me doubled over the kitchen counter or to the rapid cycling. It felt as if my bipolar were toying with me, holding me down, then batting me back and forth for fun.

Those weeks of my life were so awful that I believe I have been in some sense traumatised by them. Not by my treatment, nor by my behaviour, but by the unexpected intensity and depth of the pain I went through. Merely thinking about it, about the anguish, about how desperately I wanted to die, generates panic. I don’t want to go there again, not even in memory. Even my release from depression was scary in its own way; if I have no idea what made it go, how will I know what might make it come back? The lack of warning, the lack of control, makes me feel like a piece of flotsam, carried along and dashed against the rocks at apparently random junctures.

And so when yesterday my mood dropped – very suddenly, around lunchtime, after a lovely Saturday and a pleasant Sunday morning – I got scared. Scared that it was happening again, that my bipolar was picking me up yet again, for its own amusement. I was scared again this morning, when I woke up and felt low from the outset, again for no discernible cause. By lunchtime, I was feeling mild, but definite, elation. Between 12pm and 5pm I shopped for a special dinner, made a cheesecake and accompanying coulis, did two lots of washing up, cleaned the bathroom, hoovered the flat and cleaned the kitchen. “Oh dear,” said Tom, comparing this burst of energy with my usual aversion to housework, usually a dead give away for hypomania. Yes. Oh dear.

I expect this is just a “blip”. That’s what my friends all tell me, what I keep telling myself. There could be reasons for slight instability: my routine’s been out due to half-term; I have taken Max for his CAMHS assessment; I have possibly crammed a bit too much the past five days or so. But in many ways recent weeks have been less stressful than, say, a month ago, when I felt perfectly stable. There is just no logic to it. I have no way of knowing whether I am getting really ill again, whether I am going to be dashed back against those rocks. Any sense that I could ever try to control this disease, that I could influence its course, now seems like ridiculous hubris. I am nothing but flotsam.

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

Finding ‘Mike’

I’ll be wearing waterproof mascara tonight. I’ve a feeling it’s going to get emotional.

I can’t remember exactly where I was when I first heard about the #FindMike campaign. I do know that one day I said to my partner Tom, “That looks like Jonny Benjamin on our telly!” A wonderful vlogger, Jonny is well known in the mental health community and I have the greatest of respect for his work as activist – but I wasn’t expecting to see him on TV.

Sure enough, there he was, talking about a campaign called “Find Mike”. From that point onward, Jonny seemed to be everywhere. In every interview he gave on national and regional radio and TV he told the same incredible story: years ago a complete stranger intervened with a simple act of kindness on Waterloo Bridge, stopping Jonny from taking his life. Now Jonny and Rethink Mental Illness were launching a joint search for this Good Samaritan, dubbed “Mike”.

I was excited that “one of our own” bloggers/vloggers suddenly had so much coverage in the traditional media, but as you would expect Jonny and Rethink also made best possible use of the internet. The campaign took off with the official Twitter hashtag (#FindMike) trending in the UK and a number of other English-speaking countries. It wasn’t long before celebrities were getting on board, including Stephen Fry, Kate Nash and Boy George and the #FindMike team followed up on social media success with further TV appearances around the world.

While the campaign was at its peak I was training to become a Mental Health First Aid instructor. MHFA specifically addresses how to support someone who is suicidal, and Jonny’s story and the #FindMike campaign cropped up in our group discussion. Since then, I’ve mentioned the search for Mike on a number of mental health training courses and delegates always tell me how very touching they found it.

Clearly, the campaign was successful in the sense of reaching a lot of people and getting them to think and talk about suicide in a non-sensationalist way. But it also succeeded in finding ‘Mike’ – or Neil, as he turned out to be. I thought it brave of Jonny to let his story be used for a huge media campaign, but it was also incredibly brave of Neil to step forward. There followed a media whirlwind in which Jonny and Neil moved from one studio to another, sharing the happy outcome to the appeal.

But it didn’t end there. The whole campaign was captured on camera by Postcard Productions and has been made into a feature-length film, Finding ‘Mike’, backed by the band Bon Iver (who have donated a song to the project) and UK singer-songwriter Tom Odell. Rethink Mental Illness have shared a trailer but are keeping the movie under wraps until its official internet release tonight at 19:00 BST. I am exceptionally lucky – I will be watching the film on the big screen as part of a reception at the British Film Institute, organised by Rethink and sponsored by Legal and General Assurance Society. It will, of course, be fantastic to watch the film on the big screen. But I also get a tremendous kick that so many people from around the world will be watching the amazingly touching story that is Finding ‘Mike’ online.

Be part of #FindMike rethink.org/findmike





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