Wednesday 25 January 2017

Trust: a World Café

An initiative to put good communication at the heart of stroke treatment got off to a lively start. Billy Mann reports.

Tess Baird is an unstoppable force. In November 2016 she gathered together a few colleagues and contacts in a small room in London's Mile End Hospital to explain her bonkers idea. She wanted clinicians and service users to get to understand and communicate with one another in more meaningful and effective ways. The subject in focus was stroke care, which is how I got the call, being a stroke survivor. She reckoned this new groundbreaking bond between patient and practitioner could be found using something called a World Café. I posted a report of that meeting shortly after it took place.
Grand ideas often get lost in what is sometimes called Development Hell, so I turned up to that first meeting, made whatever kind of contribution I could and went home expecting the idea to fizzle out. It didn't. Emails were exchanged and the spark generated at the first meeting was oxygenated into a comfy campfire, around which a whole bunch of people (plus one newborn child, Leo) sat early in the new year to thrash out some ideas for how quality communication might flourish on the stroke ward. This event quickly got its own hashtag, #trustworldcafe. 
Seven round tables in the Garden Room at St Luke's Community Centre, London EC1, each hosting five or six people, fired up and the room quickly took on the buzz of the marketplace, the sound of chatter and earnest declarations bouncing off the walls. Hot beverages were taken and posh cake digested. And to think some people were pretending to 'be at work'. 
Question 1
The event swung around four questions. The first asked us to talk in pairs about a time we "totally trusted someone". What was the experience, what did it feel like? I got chatting with someone who told me how they had 'bonded' with their partner over an intense dislike of dating. As described to me this was a proper meeting of minds and outlook that was recognised instantly by both parties. They saw it as an 'opportunity' and both were 'relieved' to have found a sympathetic ear and a glad eye. It was heartwarming stuff. 
We then moved the topic from the personal to the professional and asked what made trusting relationships function in the workplace. The answers we arrived at jointly sounded like statements of the bleeding obvious, but put under intense scrutiny started to carry more weight. All the time we were jotting words and phrases on to a paper tablecloth. Lines such as "say what you do and do what you say" and "deliver on promises" put some flesh on to the bones of everyday exchanges that involve trust, and which without trust would collapse. Relying on others is how our lives function.
Question 2
From working in pairs we moved to working the table, exploring within the group the mechanics of trust and how that might be nurtured. I learned of one stroke survivor's desire to ride a horse again, having grown up around horses in Romania. By now an artist had been earwigging at each table and was busy creating a 'live graphic' of our thoughts. It was worth stopping just to watch as she gave visual birth to all our ideas.
The #trustworldcafe 'live graphic'
The questions continued. We moved tables, went into huddles, struggled to find answers, but didn't give up. There was still plenty of cake left. At one table I put forward the idea that every 'hard', factual question a patient is asked by a clinician should be offset with a 'soft' question that gently explores the patient's life outside hospital. Cat or dog? was the example I used in a round-the-table demonstration (our table: three dogs, one cat and an awkward "cat and dog"). Questions about football, hobbies, telly, films, etc, can provide the therapist with valuable 'clues' that might open a window of opportunity on how best to advance treatment. There was some concern as to how what is essentially small-talk can be parlayed into 'productivity', the looming presence of a cash-conscious clipboarding nhs manager being the sticking point. I'm not sure my attempt to liken this kind of information-gathering to 'detective work' found any buyers. 
Libby and Aoiffe
So what did I learn at the #trustworldcafe? Too many things to list here, so please check the Twitter feeds for details. But if I had to pick one it would be at the beginning of the session when, by way of a warm-up, Tess gave us a list of questions to ask each other. The last of these was something like, "What is the craziest outcome you can imagine springing from this #trustworldcafe?" To illustrate, Tess told us her answer. It was that news of this event's runaway success reaches a rich publisher, who invites Tess to write a book about it, earning her £4million. Her newfound wealth somehow puts her in contact with George Clooney, who promptly ditches his existing wife and marries Tess. And everyone lives happily ever after. Such is the power of the hashtag.

Thursday 22 December 2016

ART: My Stroke Journey

Art gave Billy Mann a chance to tell the story of his stroke in an unusual and often graphic way

My annual visit to the National Hospital of Neurology and Neurosurgery in Queen Square, London, to deliver some macaroons and Vin Santo to the therapy team for Christmas got me feeling sentimental. I realised that visiting the Neuro Rehabilitation Unit (NRU) on the second floor has become like returning to your old school. Memories come flooding back. Seeing the patients travelling the same rocky road I did four years ago is a wrench, riddled with pain but saved by an overwhelming sense of hope. So much happened here for me. It is where my life was put back together. It was a rebirth. So, as naff as that sounds, I feel quite attached to the place and to the people who helped me during my two-month stay. 

Most of them have moved on, but Anne Fleming, who dealt with social work issues, was still there and full of good spirit and a still unfeasibly straight fringe. I deposited the festive goodies with her, asked her to pass on my best wishes to anyone who might remember me and put in a plug for an exhibition of paintings by survivors of brain injury from Headway East London art studio, Submit To Love

It wasn't such a shameless plug since I have a series of five paintings included in the exhibition depicting my 'stroke journey', and as already stated, NRU played a key part in that. Each of my paintings includes a hand-written paragraph describing the five 'chapters' of the past four years, from the moment of the stroke to my life as it is today.

The first, 'Surrender' attempts to illustrate the period from the initial trauma to when I went into surgery.

Surrender

The second picture, 'Oblivion', is all about what happened in surgery.

Oblivion

The third, 'Confusion', examines what happened after surgery when I was in and out of ITU and then on the stroke ward.

Confusion

The fourth painting in the series, 'Survival', covers the sink-or-swim experience of my stay in NRU, where the chance to start again kicks into action.

Survival


And the final picture, 'Release', reflects of my life since discharge from hospital in February 2013 and the shape it has taken since then.

Release

I could bang on endlessly about these pictures and their meaning, but the blunt truth is that, once they were finished, I was glad to see the back of them. I was bored with myself, and right now I don't care if I never see them again. Sometimes the right thing to do is to simply let go of what was and what happened. Strange, though, I can't imagine losing the tiny bit of love I feel whenever I visit the National hospital in Queen Square, and long may the macaroon continue to be delivered.

The exhibition of paintings by members of Headway East London is at Stratford Circus Arts Centre, London, until 23 February 2017.


Friday 9 December 2016

NEWS: Theresa and Boris

Local: Meet your Councillors

Somebody said something interesting, eventually

Subject Councillors answer residents' questions
Date Tuesday 29 November, 2016, 19.30h
Location Downstairs, beneath the chess players, Golden Lane Estate community centre

Stanley Cohen House with its Grade II-listed "plastic bags"

Alderman Graves (he is the Big Hat in the posse of our Elected Representatives) began by asking how news of this meeting got around the estate. Did we hear about it via email, paper mail or by some other route such as noticeboards? He soon got the message that things could be improved in that regard before Lee Millam (Great Arthur House) stepped in with an urgent moan about the workmen doing the windows at Great Arthur. 

What were they playing at? Nothing, seemed to be the answer. Drinking tea, rolling fags, discussing whether the universe was infinite or not. Anything but fixing the bloody windows. The Alderman started to take on the ruddy complexion of a man who'd just realised that leaving his new golf clubs in the E-type was probably not such a good idea. One of the other councillors (a lone woman among six men) said something along the lines of "we hear what you're saying", which I'm not sure was the answer Mr Millam was looking for.

The subject moved on in a roundabout way to social housing, right-to-buy, who pays for what, how the housing stock is protected from predatory speculators in the age of Materialism Gone Mad, and the thorny issue of numbers of properties built versus the location of said properties. 

Roughly speaking, at the core of this is whether, for the same money, to build 100 new residential properties in the centre of Cripplegate, or else to build 300 dwellings four miles outside of it. These are the Big Questions those at the Corpy agonise over every minute of their lives, and especially during toilet breaks. Add into this equation a heavy shot of central-government busy-bodying and it's headaches all round. 

Councillor Gareth Moore (he's our guy off the estate) raised some characteristically realist points and explained that it is in the DNA of the Corpy to skew all decision-making towards business and commerce (my words), and that the planning protocols that apply for commercial projects differ entirely from those that apply to residential stuff. My understanding from what he said was that the Planning Committee on the council was overegged with expertise in the commercial field, but very light on expertise in the residential area. This has resulted in no end of bureaucratic constipation for residential matters, but was now being corrected by someone new in charge of things.

Then came an interesting bit, and it came from Alderman Graves, who was by now warming to the occasion and looking a little less likely to burst a blood vessel. It was triggered by Paul Lincoln (Basterfield House), who said that Barbican residents have special status within the Corpy - their very own committee - whereas Golden Lane is some kind of poor relation, forever in receipt of second-hand clothes. Gravesie, as I was now calling him (to myself), put on his 'thinking-cap' face and said that the way forward might be to start up a Golden Lane Working Party. To my ears this sounded like progress, and even the other assembled councillors (who all sit in a row, looking as if they are waiting to be called into the head teacher's office) showed signs of resurrection.

The Aderman's suggestion was not an opportunity to be missed, and after a brief diversion into drains, insurance and a potent question from myself about the poor lighting around the estate, Sue Pearson (Hatfield House) whose middle name is Persistence, raised her hand. Were the assembled officers aware of the newfound love affair between Golden Lane residents and the Corpy, instigated by projects such as the redevelopment of the community centre, the Lord Mayor's float and an overall softening of behavioural tones. After a massive whinge about the "plastic bags" still stuck on the end of Stanley Cohen House, she spoke about evolving plans to find a robust yet sustainable management model for when the community centre is refurbed and reopened. Magically, she screwed a pledge of support from each of the honourable members of Death Row and everybody skipped off home to watch Jordan Banjo getting evicted from I'm a Celebrity...Get Me Out of Here!

Happy days.

Sunday 20 November 2016

At Renal Outpatients

Conversations about kidneys are a speciality for Billy Mann


My face must look like it needs a good talking to. Every six months or so I attend a regular outpatients appointment at the Royal London hospital in Whitechapel to monitor the state of my kidneys. I suffer from a hereditary condition that, left unchecked, might result in kidney stones. Passing a kidney stone is not something I would wish on my worst enemy. 

In the waiting room at my most recent appointment a man sitting nearby started asking me questions about his kidney and fished for information about mine. Cheeky bastard, I thought. He wanted to know if I was in line for a transplant, because he was sure as hell he was. He started talking about the different signs of kidney damage and their intensity  I told him that right now I am able to manage my kidney difficulties by drinking lots of water. Two to three litres a day. He seemed unimpressed. "I don't like water," he said. I replied: "Any fluids will do. You can drink beer if you want." Then I realised that this man was almost certainly Muslim. Dohh!!!

'He was determined to believe his 
own kidney condition was serious'

Riven with guilt, I moved the conversation on quickly. I started to mutter something about the miracles of modern medication but he was determined to believe his own kidney condition was serious and that death was but one more visit to the urinal away. I struggled on, trying to convince him that the doctors knew what they were doing and things are rarely as bad as you think they are. But he already sold himself the idea that his predicament was drastic and that he would require a transplant. I opened my mouth, took a breath and was about to tell him that it is quite feasible to live a full and meaningful life with just one kidney, when his consultant arrived and took him off for the designated appointment. My face must have looked like it had made a narrow escape.