Relationship is everything

Nicky Hayward shares what she calls ‘a punter’s review’ of ISPSUK CONFERENCE 7- 8 September 2016

I learned of the existence of – the International Society for Psychological and Social Approaches to Psychosis – just this year.  Yet apparently, they’ve been going strong for more than 50 years.  For me, this was a sad discovery as – in the workshop Anne Cooke and I presented – I spoke about the fact that my mum and I were desperately seeking information and help when my brother was diagnosed with schizophrenia in the late 1970s. We were unable to find any and, tragically, he took his own life soon afterwards.

On their website, they explain:
We are an inclusive organisation interested in the human experience of psychosis and in humane responses to people affected. We aim to promote dialogue about, and understanding of, differing perspectives on the nature of psychosis. We work to increase awareness of, and access to, a diverse range of social, psychological and creative approaches to the psychoses”.

The theme of this event was ‘Therapeutic Relationships’.  The setting was the amazing Exeter University Streatham Campus – bejewelled with tropical plants, graced with a sun terrace at Holland Hall (where accommodation was provided) offering a vista of rolling hills and emerald fields; and even an open air swimming pool.  The weather was warm, the skies were blue and the spectacular sunset on the first evening almost felt as though it could have been ordered for the occasion!  After the decades of struggle my family has endured, this felt like ‘mental health’ utopia … people kept saying sensible and even hopeful things!  I didn’t invite anyone to pinch me, as I wasn’t keen to wake up.

The one thing that brought me down to earth with a bang was the parking nightmare I remember from previous visits to this site.  If you ever have to go to an event there, and you’re not paying for accommodation (as you get a pass as part of your overnight package), it seems the best bet is to park in the meter slots on the road just outside the main entrance.  The price is reasonable, you can stay there all day and it’s an easy walk up to all the function rooms and halls.

Anyhow, the organisers crammed as much as they could into the two days.  The first day’s programme ran from 9:30 until 6:15, when we repaired to the hanging valley terrace for pre-supper drinks and a ringside view of the aforementioned extraordinary sunset – neon rays slicing through the cloud, shooting lasers into the heavens, highlighting its upper edge with gold, kintsugi-style. The following morning, formalities commenced at the fairly unearthly (to my mind) time of 8:30 and, as luck would have it, Anne and I drew the short straw: this was the slot we were allocated for our workshop on “The perniciousness of ‘expertise’ and ‘insight'”.  Credit for the title must all be given to her, and it proved to be a crowd-puller. I think the provocative term ‘perniciousness’ clinched the deal! We left the door invitingly open for the less punctual (I’m usually one of those) and, ten minutes in, the 40 seats in the room were all but taken up.

Professor Rose McCabe kicked off proceedings on the first day talking about how even our non-verbal communications – subtle body language, the pacing and inflection of speech, and so on – can say a lot about our attitudes and approachability, and can be modified to feel more inviting, safe and affirmative.  Next up, former nurse Marcus Evans remarked on the ‘factory approach’ in psychiatry that is in vogue; part of a system in which there are marked power imbalances. 

Suman Fernando spoke about transcultural psychiatry, drawing distinctions between such phrases as ‘global mental health’ and ‘mental health worldwide’.  The former, he said, refers actually to the spreading of psychiatry and is driven by economics.  He confirmed the often cited claim that spontaneous recovery from what in the west is termed ‘schizophrenia’ is more prevalent in Africa than here despite our extensive, costly ‘services’ and the powerful psychoactive drugs people are dosed on for long years on end, often for the rest of their lives.  An influential World Health Organisation study conducted as far back as the ’60s and ’70s made this clear.  Many times over the two days we found ourselves asking: when something like this is clearly the case, and also even sometimes a well-known fact, how it is that such significant observations still cut no ice, and nothing changes?

Other lectures discussed such fascinating subjects as trauma-informed models of understanding what is commonly termed ‘psychosis’; attachment theory being a potentially useful paradigm for trying to understand this experience, and the need for compassion both in therapeutic partnerships and also for oneself … whether one is a client/patient, family member and/or an involved professional.  It is always important to remember that, as human beings, we don’t often fit into neat boxes, and the true picture often looks more like a Venn Diagram – with its overlaps and intersections.

Mark Hopfenbeck, who works at a Norwegian university, spoke with great enthusiasm about Open Dialogue, an approach that was pioneered in Lapland and also New York and which is currently being piloted in a number of trusts in the UK. He remarked:

“We need to make a change.  I think one of the possibilities for change is Open Dialogue, and I think the UK may be the place to do it.  I apologise if I’m evangelical, but I passionately believe in it”.

He quoted Jonathan Rutherford’s words:

“Tend to the social and the individual will flourish”, speaking of the need for re-tribalisation – that is, returning to a community who know each other and care enough about each other to come close enough to try to share vulnerability. 

“Thinking that people will get well as the result of some magic bullet pill is dismissing what we know of social determinants” he reflected, adding that when a worker is moved to tears because he or she cares so much for someone who is struggling, that breaks through barriers and makes the difference.  He said a lot of the weight when training in the Open Dialogue approach is put on observing feelings:

“We should all become connoisseurs; gourmets of our feelings.  Most of us don’t know how we feel.  Whether or not we think we should, we need to speak more and more time working with our emotions.  If we’re going to work with people with emotions, we have to know emotions ourselves”.

I found it a real challenge to decide between workshops when it was my turn to attend others’, with time limited and competing topics ranging from – for example – Compassion related Developments in Psychosis; Listening with Psychotic Ears: Clinical Skills for Accurate Understanding & Effective Communication for Healing and Distress; Psychosis & Relationships with Mental Health Professionals: Memoir Writing as a Reflective Strategy and The Tree of life: A workshop for us all, to focus on cultural roots and the story of our strengths.

At the Soteria Bradford workshop, we heard the inspiring story of how the UK’s first Soteria House evolved.  We discussed the power of the idea of simply being with a person who’s struggling; not jumping to try and save them, advising or assessing them.  Jen Kilyon, one of the founder members of the Bradford house and trustee of both Soteria Bradford and ISPSUK, painted a vision for us of an environment of exploration and the approach that evolved which the team now describe as ‘mindful companionship’.  The house developed as somewhere where ‘normal life’ carrying on offered the possibilities of low-key social interaction and routine, and the reassurance of unquestioning acceptance.  Poignant feedback Jen shared demonstrated that the everyday atmosphere and set-up allowed people to realise they have the inner resources to find their unique way forward.  Former residents remarked:

“They didn’t focus on me”

“Regular contact brought back my socialisation”,

“They spoke to me and showed the greater community it was ok to do that”.

It’s a key aspect of the Bradford approach that, as people begin to heal, they are integrated into the local Soteria community in which people uphold each other’s health in the long-term too, and sadly this means the facility would not be appropriate for people who don’t live in the locality.  But Brighton’s Soteria group is working towards setting up a house there, and Exeter too has a lively Soteria organisation.  There may be others, but I just know about these.  With approaches like Aldershot’s Safe Haven late night cafe (which offers proper help to many in existential crisis who would have gone to A&E, however unhelpful that’s likely to be, because it felt like there was nowhere else to go) becoming popular and being rolled out across Surrey and copied in other parts of the UK too, I predict Soteria houses will become much more common within the next decade.  Workshop attendees were full of admiration for the Bradford group for pioneering this phenomenon in the UK.

Currently looking for new premises following the inspired success of its initial year’s pilot project, Soteria Bradford is now well-established, energised and going strong as a vibrant human network. 

The overarching atmosphere of the conference championed genuinely non-hierarchical and egalitarian values and a simple aspiration to support self-(re)discovery and reintegration, and this was best illustrated to me by the fact that a young man who is involved in the Bradford Soteria community, who is also a statutory service user, chose to travel all the way from Yorkshire (which can’t have felt easy) and meet on equal terms what could have been viewed as a daunting array or professionals and academics, as well as survivors of both mental ill health and mental health ‘services’ and their families. 

As I watched him listening intently to insights and observations that would doubtless by painted ‘radical’ by proponents of the current system, the very fact that he had come along and frequently looked riveted by what was being discussed powerfully reflected the event’s success to me.  Like the rest of us, he took a break from sessions when it all felt enough – we could hang out in the breakout areas, contribute to evolving art installations and writing workshops facilitated by inspirational Artists-In-Residence Caroline Cleave and Anna Murphy from the Cornish Kneehigh Theatre Company , or enjoy the balmy south west Indian Summer campus environment – and, on the second day, an invigorating swim in the pool provided just the rest from the intensity of all the talk that he needed.

I was grateful to be awarded a bursary place, as someone with what’s widely spoken of as ‘lived experience’ in the mental health field (- how people could experience things if they’re not alive beats me)!  Anyone who has been unwell him or herself, or experienced altered states of mind (whether having used services or not) – and also family members and friends – is explicitly invited to apply to attend ISPSUK events either free or for a greatly reduced price.  Everything is arranged easily, with the minimum of fuss. For as little as £15 a year, you can become a member of ISPSUK and receive email updates on all they’re planning and involved with.  Bursaries, where available, have to be applied for, but the fact I was awarded one – as a newcomer – proves they’re made available where possible.

The highlight of this year’s event, for many of us I think, was the joint presentation by Silje Marie Strandberg and her former mental health nurse, Lone.  This 45 minute, end-of-the-afternoon slot on the first day expanded timelessly, its atmosphere and the thoughts it threw up lingering hauntingly into the evening and beyond.  I felt I could only do it justice by reviewing it separately, in its own right.  Here, though, I will simply say that nothing illustrates the power of authentic relationship (the focus of the conference) better than eloquent evidence of profound connection itself.  These two courageous ladies spoke bluntly about nothing less than love growing out of an initial aversion, and of hard-won trust being earned through dogged perseverance, and we witnessed the liberated soul Silje Marie’s devotion to the once loathed and often rejected woman she now acknowledges to have been her saviour.

Marcus Evans remarked that while we had gathered at this event because of a common concern about the way ‘mental health care’ is approached (certainly by the statutory services), and we acknowledge nothing’s likely to change for the better overnight, there have always been – and always will be – ‘outbreaks of humanity’

His tongue-in-cheek irony made me smile, as you’d think it should be the other way round: that humanity would be the main currency of human beings, and inhumanity the exceptional circumstance.  But the more optimistic message in this statement is that where the heart is engaged, and empathy kindled, authenticity can always have a chance of connecting us to one another, even when all hope seems lost.  This was the message I brought away with me after all the talking was done: that real-life stories teach most powerfully, that relationship rather than ‘therapy’ holds the key to healing interactions, and that our common humanity gives us the best chance of connecting deeply with others once we get beyond divisions, classifications and the misuse of power and status. 

Smiley Teary badges appeared progressively on lapels over the two days.  This symbol, designed by the Only Us Campaign (which suggest that while I might be smiling outwardly, often I can be feeling inwardly devastated or sad), is the emblem of this pay-it-forward social movement which is active on Twitter and Facebook.  Badges can be purchased, even a handful at a time, to give out.  The idea is that you are given your first one; others are subsequently given one by you (for more information, as ever, click on the hyperlinks). 

We left the conference topped up with a sense of common purpose, reassured that we have many passionate allies, effectively empowered by the Only Us straplines: “No them and us, only us”

“Not 1 in 4, 4 in 4” … (of us are vulnerable).
In other words, we can help each other best when genuinely able to reflect:
“There, but for the grace of God, go I!”