Thursday 22 December 2016

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 macaroons 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.



Saturday 12 November 2016

It is good to talk: conversation in practice

world cafe stroke


The first patient-clinician interview is the chance to start a beautiful partnership, says Billy Mann


Health professionals fret far more than you might ever imagine about how they interact with patients. Many even struggle with the word patient. Other terms for the person being treated are ‘client’ and ‘service user’. They temptation to reach for the word ‘customer’ is never far away. 

Hold that thought while I tell you about a group I attended recently to work through the foundations of what will hopefully turn into a World Café around the subject of stroke. Briefly, the idea is to build the notion of a ‘conversation’ into the clinician/patient meeting point. Those present at the meeting, brought together by Tess Baird from Barts Health, all came from the health professions or from academia. Plus me, with my A-level in Geology and a diploma in stroke survival. 

So it goes without saying that my input was purely anecdotal. I told them all how, during stroke rehab, I stupidly urged an OT to coach me in getting in and out of the bath, only then to get stuck in the bath, robbed, as the stroke had left me, of the upper-body strength to lift myself into a bath-exiting position. I told other hilarious stroke stories, too, and watched as they all glazed over, but my one serious point concerned what I called the ‘partnership’ a patient needs to form with the health professionals charged with their care. 

I decided early in the exploration of my post-stroke world to ‘get people onside’. OK, confession, my wife told me to do it, in fairly blunt and unambiguous terms. But it worked, or at least it did for me. I talked in a friendly way to all professionals. I listened to their gripes. I learned that my physio was studying for a masters degree. I gossiped for Britain and passed on advice for vegetarians travelling in Italy. All of this seemed to bind our common purpose in a more meaningful and, yes, fun way. My wife now refers to me as a 'people person'.

I continued this crazy experiment once I had been discharged from hospital. First on the list for my newfound charm offensive was my GP. I learned about his family, about his specialist areas of medicine and tried to get him to bitch about bureaucracy and the tedium of top-down meddling in the nhs. He didn't crack, maintaining a steely resolve throughout. No confidential or compromising disclosures took place, but the very act of talking made, and continues to make, a difference to how we ‘work together’. 


world cafe stroke quote

Others in the group made serious points, too. Physiotherapist Volkmar Müller talked about the everyday realities of the physio’s job and how ‘had nice a chat with X’ would not be considered by his line manager as a suitable entry on that day's list of ‘work completed’. Stefan Cantore, a seasoned egghead in organisational behaviour at Southampton University, fleshed out the World Café philosophy and its potential. He also helpfully (for me) clarified the difference between conversation and dialogue

The small room in Mile End hospital fizzed with the desire to find practical routes towards better communication, but one theme emerged persistently: TRUST. Build trust. Professionals to trust patients; patients to trust professionals. It’s a two-way thing and demands active participation and a big old willingness to give it a go. And this is where we come back to THE CONVERSATION. 



Just for a laugh, I decided to do a quick search of synonyms for the word ‘conversation’. Top prizes go to: tête-à-tête, heart-to-heart, breaking bread, head-to-head, shoot the breeze, natter, confab, chit-chat, rabbit. In my head it's already starting to sound like two lines in a rap song, but whatever you want to call it, just get on with doing it, and at some point in the future maybe we will be able to state with confidence that to Talk The Talk and to Walk The Walk are exactly the same thing.

Wednesday 6 July 2016

Wet, wet, wet



You might have sat comfortably during the 2012 Olympics and gazed at the pictures on your telly of the Zaha Hadid-designed London Aquatics Centre and wondered whether it was as impressive in real life as it was as seen through the  lens of a TV camera. Let me answer that question. Yes. Yes. Yes.

And it’s not just a stunner on the outside. Despite the modifications that took place before its 2014 opening to the public, the huge interior is a dream just to walk around, even before your nose catches a whiff of chlorine. The views of the 50m tournament race pool and 25m diving pool recall instantly memories of the moments that took your breath away during those glory days in the summer of 2012 (was this when Michael Phelps officially became ‘the greatest swimmer that ever lived?). The overall effect is somehow magic, and even the signs to the changing rooms start to look full of grace, visual harmony and touched by the hand of triumph.

Now, here we were, a willing contingent from Headway East London, itching to see if getting wet could do anything for brain injury.

My own post-injury experience in the shallow end is meaningful - to me at least. Shortly after discharge from hospital following a hemorrhagic stroke, I was assigned to a therapy team from London's Homerton hospital. A physio and OT visited me at home and devised various exercises and routines that might aid my recovery. On one such visit we went for a swim in my local pool. The OT was at first concerned how I would manage getting in and out of the pool. Her worry was short-lived as I pre-empted any practical what-have-you by simply throwing myself in. 

Hitting the water and being bathed instantly in its warm, forgiving embrace was a moment of sensuality words cannot do justice to. Four months of deprivation in a hospital bed might well be the psychologist's explanation, but ‘bliss’ is as close as I can get to describe the sublime feeling.

I'd like to say that in that single moment swimming became an essential post-stroke exercise for me. That would be a lie. But what I did find on our group visit to the Aquatics Centre, in between some infantile splashing of my fellow Headway members, was a new way to use a swimming pool. Some of the yoga and tai-chi routines that Headway Therapy Team offers regularly to its members are given a whole new dimension when tried in a pool. The soft resistance of the water slows the movements and provides weight support for those with balance problems. Falling over in a swimming pool is no biggie. It's fun, actually.

So, expect to see me in swimming pools more often from now on. The legacy of London 2012 is alive and kicking, despite all those doomy predictions. It was shortly after attending events at the Games that the stroke hit, leaving me for dead. I can’t be sure, but I like think that the courage, determination and sheer strength of will I saw in the athletes helped things turn out differently for me, so if anyone ever tells you those Games were a waste of money, tie a brick to their foot and throw them in the deep end.

Wednesday 22 June 2016

Net gains


Symposium isn’t a word that trips off the tongue. It sounds impossibly proper, serious and really quite grand. When asked by Bridges Self Management to help out at their 7th Annual Symposium at St George's hospital in London I felt out of my depth just reading the email. In an attempt to at least look like I was somehow in the loop, I looked up ‘symposium’ in the dictionary. It is a compound word that dates back to ancient Greece and translates roughly as a ‘drinking party’. A symposium was a bunch of mates getting together for the sole purpose of getting drunk and talking endlessly. That’s more like it. What could possibly go wrong?

What went wrong is that I forgot to mention several key points. Drink had nothing to do with it, and neither was the panic that struck when I arrived in the designated conference room in St George’s at the sight of three, yes THREE screens from which our presentation was to be projected. The main purpose of my involvement was to supply a repeat performance from a 2015 conference in which physiotherapist and Bridges trainer Katie Campion interviews me about how I coped after discharge from hospital following a heamorrhagic stroke. We talk about goal setting and I seize the opportunity to make plentiful reference to football and the team I support, Liverpool.

In outward appearance, our presentation resembles the work of a second-rate comedy duo. We feed each other lines, but they are not always the right ones. I’m always aware of undermining Katie’s proper professional status with my bad jokes, and sometimes the result is confusion. So, in the part where we talk about my understanding of the word 'goal’, I had intended to shoot a line about the importance in football of coaches and captains. I missed the shot. And in the part where I answered questions about devising small steps to big goals, I should have mentioned the importance of visualisation. Again, I fluffed it and the chance went begging.

It wasn't all bad, though. Katie did manage to grab victory from the jaws of defeat while we were on the topic of my early goals when still in hospital. In this section I typically talk about the desire to complete bathroom activities independently. I then move on to describing my attempts at the 'transfer’. This will be familiar to stroke nurses worldwide and involves getting a patient to move themselves safely from wheelchair to bed, and vice versa. At the time I was desperate to master this manoeuvre because being able to snoop around and then return to bed for a snooze was, for me, the very essence of being alive.

Maybe I was a bit too desperate because my early attempts involved hurling myself from a sitting position on the bed in the general direction of the wheelchair seat. The reverse process was not much prettier and, as I outlined this technique to the rapt symposium audience, Katie quite sensibly interjected, “Wasn’t all that hurling a bit risky?” This remark opened a can of worms on the subject of risk, and to what extent patients should be entitled, encouraged even, to explore the everyday fringes of jeopardy. It is a big, important subject, and relevant not only for stroke patients but for anyone living with a long-term condition. Is not the freedom to make mistakes a universal human entitlement? Discuss. Needless to say, we barely scratched the surfaces of it, but I am glad the subject of risk had put in an appearance as Katie and I tumbled our way innocently towards some kind of conclusion to our presentation.

So, as I sat down afterwards, the word PHEW shot to mind. I had barely paid any attention to the symposium’s previous speakers. All I can remember is that two experts from Lewisham CCG, Damian and Angelika, proposed what seemed to me a perfectly valid practical distinction between self-care and self-management, illustrated using a projected Venn-style diagram that looked like a hard-boiled egg. I was pleased to note that the yolk was not centred but irritatingly offset, just like mine are when I make boiled eggs. Another pair, Heide and Tino, ran a video of a lovely chatty couple who were calling for a bit more joined-up thinking from practitioners and clinicians in regard to service users.

Lisa Kidd, a leading goal-scorer for nursing and Scotland, followed our presentation, and made some telling points about how things actually happen on the ward. I am often guilty of gushing praise at the doctors, nurses and therapists who have all contributed to my stroke recovery, to which they most commonly reply, “Thank you, but I was just doing my job”. My response is always the same: “I know, but you choose the way you do your job, so please accept my thanks for that.” I was extremely grateful in this respect to be able to forge good communication with all those involved in my progress after stroke. It is an experience and a lesson I hope I will never forget.

Monday 16 May 2016

Bridge the Gap





On four successive Mondays in April I helped on a research project into whether the step process method in stroke rehabilitation as advocated by Bridges Self-Management can be made to work in a group setting. The more interesting details of the study, by UCL's Ella Clark, will I’m sure appear in more scholarly quarters, but what I can report is that about half way through the trial, which brought together seven stroke survivors, Lucinda Brimicombe, Bridges Director of Training and Innovation, raised the question as to what was uniquely "Bridges" about this project? How was it different from other stroke rehab groups? In what ways and to what extent were Bridges methods working successfully? It was at this point that images of bridges started to pop into my head. 


Runcorn Bridge
I have come to know several bridges, starting with my earliest memories as a child in the back seat of a car crossing the Runcorn Bridge over the River Mersey. It seemed so big with its hard iron frame studded with rivets the size of your fist. It was scary. And more recently I enjoyed the Scandinavian TV crime series The Bridge, which features the Øresund Bridge that connects Sweden and Denmark. It is 16km long, and it is scary. The drama begins with the discovery of a body exactly half way along the bridge. Is this in Sweden or Denmark? Which police force will investigate the crime? The Swedes? The Danes? The story is later complicated when the body is found to have been cut into two equal parts. Scary.
Øresund Bridge
Travelling the Øresund Bridge via Google Earth is an eye-opener. It seems to go on forever, and you can easily get lost in thought along the way. You begin to run your imagination over the symbolism of the bridge as a connector, how a structure can unite two very separate things, what kind of loads will that structure carry, what is the importance of traffic volume, foundations, etc, etc, blah, blah?

Back on dry land and stroke self-management, in Bridges World, small steps to big things is the mantra. I call them 'baby steps'. What I have found from experience is that in setting yourself small goals (for me that means easily achievable) and then exploring ways to hit your tiny targets, you reflect on and modify along the way. For example, what a year ago for me was the stated desire to complete a walk of the famous Seven Sisters along the white cliffs of the Sussex coast from Eastbourne to Cuckmere Haven, has mutated into a daily patrol of my neighbourhood on foot, stopping to chat with the locals, telling children to stop being naughty and checking the ever changing world of an inner-city wildlife garden. The dream of walking the Seven Sisters has not disappeared, but it is much less urgent than it was a year ago (I have even done the walk, on a treadmill with Google Earth on my iPad). In this way, by embracing the small steps as an end in themselves, I learn more about myself and can therefore make better decisions about those big juicy goals. 

The approach is even appropriate to activities not remotely related to stroke rehab. Not long ago I used a piecemeal step method to 'build' from visual components a picture of Hammersmith Bridge for my wife's godmother. And she thought I sat around in the cold with a box of paints for several days. Not likely! It's a fake.
Hammersmith Bridge
So how might these 'baby steps' work in a group situation? That is still a work in progress, but I do have one observation from the UCL meetings. I have noticed that motivation is where rehabilitation often stands or falls. I am a very focused and determined person. Most people are not, and I have seen progress in others falter simply because the will to action is simply not there. And in the group work we did at UCL, what surprised me most was the drive shown by some of the group members to help others. They had found a role, a mission, a sense of purpose. They found their motivation, their post-stoke mojo, a reason for doing something. It is as simple as the slogan  'Help others to help yourself'. 

It doesn't take a mammoth leap of the imagination to see that this is potentially very powerful. How systems and structures (the bridge?) can be built to support such a self-sustaining programme of mutual enablement is the question. Making it work is the challenge.


Friday 12 February 2016

Bend it like Billy: Yoga


If I turn into a Yoga Bore, feel free to shoot me, says Billy Mann. In the meantime ...


To the innocent bystander, the transition from tai chi to yoga must seem like swapping a boiled egg for a poached one. Yes, the two disciplines do have similarities, not least in this case because again we are in the capable hands of Anne and Nora at Headway East London. The key differences between the two (tai chi and yoga, not Anne and Nora) are movement and breathing. Breathing is much more of a BIG DEAL in yoga, and the movement is more structured than in tai chi, aimed often at specific parts of the body. Moreover, whereas you can adapt tai chi exercises into something you can do easily at, say, the bus stop, or in the kitchen while waiting for the kettle to boil, yoga demands more focus, a focus that leads you to "feel" the movements and stretches. 

We started the programme seated, which is a gentle way to introduce the movements. The Cat-Cow is a movement that stretches the back and neck by first rounding the shoulders forward then reversing the movement back while tilting the pelvis, arching the back, extending the chin and chest into what is hopefully a sort of elegant s-shape. Not sure I quite hit the mark on that one. The word elegant did not spring to mind. We went on to do some moves where we sit, hands together, elbows pointing right and left, in a sort of praying pose. Then we breathe in, extend our praying hands skyward as if reaching for heaven, then hold, breathe out, breathe in, extend hands towards the outer reaches of the universe, and hold, breathe out, breathe in, and slowly move your arms back to planet earth in a forward stretch that again arches the back, sticking out your chin and staring meaningfully at that spot on the wall. You then bring your arms first down to the side of your chair, then gather up your hands into your lap in what is supposed to look like a dignified, enigmatic yoga-type pose. I was convinced that I looked the part, but that could have been delusion kicking in.

If this is as far as I ever get in yoga, I shall be quite happy. The Cat-Cow thing could, in my view, be done easily while sat on the toilet. Who knows, we could have discovered a revolutionary aid to comfortable defecation? Send me the cheque. Anyway, I have already been able to build it into my daily routine to the extent that I can sit, stock still, in a straight, aligned and yogistically perfect way (or so I imagine) watching Midsomer Murders and not feel like a dickhead. It helps having a wife who is a Yoga Bore. 

So, well done Yoga. Well done Anne for making it so easy for someone who probably would have previously shot anyone who dared to suggest my life might be improved by this Total Hippy Nonsense. I was wrong, you were all right, and I surrender. Defeat, bring it on xx