All posts by davidngilbert

About davidngilbert

Musings on the future of health, healthcare and role of patients. Towards patient-led and truly patient-centered services. By David Gilbert, Director of InHealth Associates www.inhealthassoiates.co.uk Also follow me on Twitter @Future_Patient and @DavidGIlbert43

When Elephants Fight: Time for honest discussions (with patients and citizens) about the NHS

This blog was first posted at http://www.nhsreform.co.uk/blog/2017-02-07/nhs-reform-time-to-learn-time-to-listen-time-to-work-together

When you don’t talk about difficult things:
1. The real problems fester and grow.
2. When the festering hurt gets too much, things boil over and everyone shouts.
3. The ones with the loudest voices do the most shouting.
4. The most vulnerable voices get excluded and are hurt in the overall process.

There is an African proverb: When elephants fight, the grass gets trampled.

It is more courageous to be open and vulnerable than to be fixed, more wise to stay at the table of difficulty and hear people out, than to let things fester or to shout. That is why I have joined a little group of kind people who want to hold a space for us to talk about NHS reform. See http://www.nhsreform.co.uk/blog/2017-02-07/nhs-reform-time-to-learn-time-to-listen-time-to-work-together

The NHS is a hot topic, yet few people are holding a space for dialogue, reflection, listening, questioning, exploring…. There is too much belligerence and toxicity around issues of access, safety, funding and ideology to allow for that.

The NHS Forum wants to change that so we gain richer insights into the issues and can find solutions together. It seems a brave non-partisan attempt to find ways to model partnership working in policy. I wish it all the very best and am proud to be invited to be part of its editorial board.

However, if your thing is to shout, or if you want to insult people because you do not like the ideas expressed, please go somewhere else. The world Is sufficiently febrile at present without us adding to it.

Let’s put things another way: After many years of chronic tension in my family, one day my mum and dad argued. Two days later they divorced. I was 14 and tried to facilitate, to no avail. Stupid really in hindsight. But there you are. Then, after many years of suppressing my own anxieties, I had a breakdown.

The pattern is clear. I don’t want the NHS family to divorce. Or for the children (patients, carers) not to have a voice, or to have a breakdown (suffer worse care).

Can we turn down the heat?

I have written about the Junior Doctor dispute and how the belligerence on ‘both sides’ created a toxic atmosphere that further poisoned relationships and any opportunity for sensible dialogue. What could have been an opportunity to discuss what different people meant by ‘safe’ working, or to explore whether it is feasible to have a seven day NHS (and what people mean by the phrase) was drowned out. This is understandable to some degree – careers were at stake, not to mention patient safety. But the real issues went unexplored. And people lobbed bricks (verbal and metaphorical) at each other.

It seems futile for any side in a playground fight to point to the other or complain to the teacher, ‘but they started it’. It all grew wearisome. And things continue to fester.

I have also written here about how the ‘independent sector’ (let’s call a spade a spade – the private sector) needs to come clean about its own shareholder interests and about accountability issues, as well as lauding its ‘customer focus’. Maybe then we can have a grown up debate about the role of the private sector in the NHS.

What’s to talk about? Lots!

There are plenty of interesting issues to explore:

• What should be done about the pharma industry that contributes to research, yet has secretive pricing deals? That contributes to economic growth, yet has a pretty dodgy record when it comes to openness around safety of some of its products?
• When we talk privatisation, are we talking about the private sector not being allowed to support commissioning (that may not affect the NHS being free at the point of delivery, at least not directly) or do we get more worried only when the private sector charges for delivery of care?
• When the private sector steps in to provide services, does that ease pressure on the NHS, or add to it? And what, if any, should be the role of private insurers?
• And some intriguing issues at the edge – aren’t GPs part of the private sector? Does that matter? What do we do about the many who defend the NHS, yet do private practice? Where is NHS dentistry in all this? And opticians?
• What do we do about social care every time the NHS gets its additional emergency money (which it has often done, to the exclusion of the less powerful voices) who want more prevention and public health?
• Is it really case of the NHS just getting more funding? More beds? More this, more that? Is the only alternative model – the only one that gets an airing – the American one? What about learning from the Nordics? Is that a valid option, or is our tax-based system still the best way to go?

All worthy stuff to explore. But none of this is aired beyond the arcane world of policy think tanks. I believe this is partly because people seem to be entrenched, and any attempt to explore are drowned in a chorus, redolent of the intractable mind and voice that shouts ‘if you’re not for us, you’re against us’. Or by a frenzied media unable to move beyond blac and white?

I bet a few people reading this will accuse me of ‘softening’ a pro-NHS stance, by even raising the questions. Well, questing for truth and justice is my passion – and if that raises difficult issues, so be it. While we hide behind flags and banners, the NHS is being dismantled by stealth.

Moreover, while the stealth continues, secrecy affects another area – my real passion: patients, service users, carers, communities and citizens being included as partners in decision making.

Meanwhile, NHS England is at it too, ducking the real problems and quashing dialogue, mainly out of fear. And foisting problems on cash-strapped commissioners, who foist it onto providers, and so it goes on. Secretive deals are being done in STP land. Decisions about closure of hospitals (aka ‘reconfiguration’), ‘decommissioning’ and ‘prioritisation (aka ‘rationing’) will take place behind closed doors. And we, the children (aka those of us who pay for the system and use it) have no voice. See my blog on ‘Secret Transformation Plans’.

I also know that, behind the public scenes of ideological defiance, all political parties share the same worries – that health services are under threat because of limited resources and changing demographics.

Patients and Citizens as Partners

The most significant issue for me is that I see a new generation of ‘patient leaders’ – people with experience of life-changing illness, injury or disability, who want to change things through working in partnership – ready to help, yet their expertise ignored again and again. The very people who are most affected – the very people who can help most – are ignored. This is about power.

You would not expect a ‘women-centred organisation’ led entirely by men. Yet our ‘patient-centred’ NHS is run entirely by clinical and managerial leaders at executive level. We have a few token ‘non-execs’ and a smattering of ‘PPI leads’ and ‘lay reps’. But this is not real accountability, nor does it signify any sort of real shift in the balance of decision making that might help the NHS out of its fix.

And, yes, at local level, things are changing a little – the rise of experience-based co-design, asset-based community development, online dialogue, patient leadership, etc.

But at policy level, very little. NHS England, and in particular, Tim Kelsey ignored patient voice during the care.data fiasco. The BMA and Hunt ignored us during the Junior Doc dispute. Simon Stephens ignored us when STPs started…

Maybe it’s time that patient leaders play the grown ups? Because the NHS family has become dysfunctional. And the dismantling of the NHS is too serious to be left just to those who shout loudest.

Let’s talk. Let’s listen. Let’s explore. Let’s have patients, carers and citizens at the table – for real. Let’s find solutions together. Come join us?
___

David Gilbert is a mental health service user, with 30 years experience in the NHS, and in the field of patient and public engagement. He is currently Patient Director, Sussex MSK Partnership (Central), the first such role in the NHS. He is on the editorial board in his personal capacity, and these are his personal views.

If you liked this blog, there are plenty more at http://www.futurepatientblog.com

 

(c) David GIlbert 2017

 

This Coldest Day – testimony for a kind soul

Dear Rosamund

I wasn’t a close friend. But close enough, I hope, to say a few things. I was going to write a poem, but you hated verse.

You didn’t get to live this coldest day of the year. I went for a walk. The guy in the car park was full of hacking cough and phlegm as he pulled on his gloves. The parakeets were making a bee line above the straight path to the field where the daffodil bulbs lie waiting. I was wondering why the joggers bothered. Why folk go on. Why they don’t.

You beat me to the most brilliant job at the BMJ. I’m so glad you did. We met at the UCLH café afterwards and in an hour I felt I knew you. I think we were (The past tense arrives with quickening gloom) quite similar – born activists and ambivalent towards academia (loving its territories of investigation and curiosity, hating its straight lines and dictats). And you made that job your own and were absolutely the right person at the right time. You were revolutionising that arena. And were beginning to reach deeper and broader.

What happened? There is that self-indulgent curiosity. I’m not sure why it matters. You’re gone.

You didn’t like poetry. We teased each other across social media. We both had cats and swapped pictures. Yours is a big furry male beauty. Mine a wimpish tabby. But you thought she was gorgeous. There is that heart again.

And here in the warm café, I am looking for an ‘organising principle’ – a theme for what I am trying to say. That is what I have been taught to do in poetry, in work, in life. But my family is away and my days have been loosened. I write what I write for a change. We go wherever we go – sometimes things happen without explanation. This blog. Your act.

During the junior doctors dispute, we both got crazed by the belligerence of both sides and the toxic nature of the debate – what happens when two sets of people set up and go tooth for tooth, claw for claw. We spied a different space and a potential solution – bring patients in. And we worked bloody hard to get a co-signed letter in the BMJ to all parties, pleading for dialogue and inclusivity. That spirit. That energy. That tenacity. That sheer bloody mindedness.

Is that what drove you in the end? Speculation. Speculation. It really doesn’t help. You, who also needed evidence. Us too. Left without.

You do need to know that you have left a deep legacy amongst us fellow ‘patient leaders’ – a term you had some problems with (we all do – even those that invented it!). But you deeply got it – that people who have had life-changing illness, injury or disability can help change healthcare. Indeed we may be the ones who will.

You deeply moved those of us who hung on to your wonderful edited articles in the BMJ. Generous. Kind. Thoughtful. Insightful. Bla bla. Words. Good ones. But mere words.

And you inspired me more than I was able to say (NOTE to readers – go now tell someone how great they are – life is utterly short).

I do what I do, only because of fellow travellers like you. We are left in a more vulnerable place. I have talked to two people who didn’t know you well, but feel that we need more than ever to support each other, to create those loose ties across the diaspora of the marginalised in these difficult times – that your death has made us even more aware of the need to connect.

I think you would have liked my parable ‘The Jewel Merchants’. I wish I could have seen your face when reading it. I wish I could have seen you at our recent event with thirty or so amazing patient leaders – you would have shone with pride at the people there. The gathering of folk ready to change healthcare forever. We will go on, with your blessings in our mind and heart. Corny? You bet.

Your laugh was intemperate and your humour acerbic and infectious. You tapped into my dark side at times, and I loved that. But. But. But.

But it is the wilful brutality of suicide that I have been struggling with. You are not my first friend to have done the deed. I have seen people dabble with suicidal thoughts who wandered wearily into a High Street and been hit by cars. I am not sure they wanted that, and were unfortunate. I did that and survived. The dice.

But I have also seen others who have gone determined and without second thoughts. It is too late now to say ‘hold on, things will change’. Maybe you would not have heard. The futility of asking myself what I could have done, what you could have asked is clear – but the guilt (again, self-indulgent) seeds itself unbearably. This too shall pass. It was, after all, your decision – we need to respect that. I think you would have argued for that in an article if you had written it.

I do not know why it is worse to think that you chose to die, than it is to bear the weight of a death through a choiceless voiceless illness. Or maybe that was the case. How little we know.

It comes to that wilful self-inflicted brutality for me. At that point you must have borne a self-loathing or a self-respect that saw that this was the only thing to free yourself of pain – again, we must respect that. I have seen what the wilful mind can do, and stood near to where you stood. But you made a choice. No blame. Respect.

Maybe it’s as Joni Mitchell said: ‘All we ever wanted is to come in from the cold’. I hope you are warmer now. I am agnostic, weave between religious thoughts and secular ones. But mostly they come down to the only thing I know any more – let’s be kind to each other. You were so kind. I am going to miss you.

The Jewel Merchants – a parable for healthcare

“The way we do patient and public engagement is not working – it fails to have any real impact because it is outmoded and unfit for purpose. In part, it was never designed to bring real change, but to buffer it and maintain the status quo. Now, if we really want solutions to our current healthcare challenges, this all needs to change.
The task is fourfold:
• Learn to value what people with life changing illness, injury or disability (IID) can bring – see patients as partners
• Change how engagement is done – rethink engagement processes
• Support people’s capabilities to better work together – develop the right skills
• Develop new opportunities for people with IIDs to influence decision making – create new roles”. Gilbert D. 2016. Stop Kicking The Cat. https://futurepatientblog.com/2016/02/13/stop-kicking-the-cat-how-patients-can-help-shift-the-rule-bound-culture-of-the-nhs/

___

 
Once upon a time, in a far off land, those of us who were unfortunate, weakened and damaged were banished to the harsh and arid Valley of Despair. There, we crawled alone to find caves in which we could live our days and suffer through the cold nights. We were changed, frightened and alone. What we had hoped to be, we could no longer be. What we could do, we could no longer do. Who we were, was no longer who we would be. We were refugees of mind, body and land.

Those of us that survived – many did not – did the best we could. We eked out a life in the harsh terrain. We learned to be creative to survive the everyday bleakness – to forage for sparse and strange plants that bore orange bitter fruit, to bear the twists of our cruel minds that woke us at 3am to the bloody cries of wolves. And to do the best we could to adjust to the terrible blackness of the cave that was now our home.

Over the snail-like years, we came to explore the depths of our caves. We discovered pins of light in the walls. We chipped at the walls to yield crystalline and asymmetrical jewels. Of course, we did not call them ‘jewels’ at first. They were uninteresting – we knew they had no value – the search was only to bide time in our intractable boredom. And that the habitual and jittery digging was something we had to do to escape from the brutalities of our condition.

We came to remember tales from our childhood. Mothers at the bedside telling of the poisonous power of the ‘Strange Cave Stones of Madness’. That the cure for this cave-borne madness (ironically) lay only in the power of the Kings (those very same who had banished us). So, we knew our touching these stones was itself a risky business. But we had no choice. What else was there to do? Our very brokenness led us to delve into broken things around us – we yearned connection, with ourselves, with others, with stones, with the world.

Some of us started tunnelling under the rocks in our cave – we mined for treasure, though we did not know it. Some strange force kept us going, and kept us tapping with rocks, digging, exploring. We began excavating under the floors of the cave and unearthed such luminous and reflective objects that we stood amazed and bewildered by what we had found. At first we thought of them as devilish rocks – that they would destroy us further with their ferocity of colour. But we still collected them, as if we were driven by the very forces that had once banished us. We could only go deeper.

And then, one or two of us began to question what we had been told. Remember that this was happening across a vast Valley Territory – all of us were mining and digging in caves that we felt were isolated from each other. Though sometimes in the middle of the night, we wondered whether the cries of wolves sounded somewhat human, like baby cries, and we dreamed of fellow cave dwellers not far off.

What if these stones were precious? One or two of us began to polish the jewels and were amazed to discover that the act of polishing changed their colour, they became reflective – we saw our own true faces for the first time in years – shaded in amazing hues of violet and gold. We were changed from what we had been, surely. But some of us saw a kind of mysterious beauty, as if our endeavours had actually polished us! We glowed.

Now I see we learned courage, resilience, creativity and the capacity to hold a light within ourselves that was more than what we had before – this is the paradoxical vision that lay behind the journey and discoveries.

A few of us began to wonder that we were still alive at all. That there was something wrong, not with us, but the world around us. Perhaps the banished had a story to tell, maybe we had found something secret that we needed to share. Could the jewels be precious to others, and not just us?

If only the market dwellers, the old Stone Cutters, the citizens and the elite in the market squares would see what we had to bring, then everything might change. If we could share these jewels with others, everyone might see themselves for what they were – reflected, in-depth, human – in these mysterious rainbow jewel glows. Surely we would be welcomed?!

A few of us set off from our caves, excited and terrified. But our legs were weak, and our carts rickety. We were not able to get far. The heaviness of our load of jewels was almost unbearable, the horses we tried to harness would not pull in the right direction. There was no support from other strangers we met on the road. Though we begged them to help us, though we extolled of the virtues of our load, they would not believe us (though a few villagers stole our jewels in the night).

What kept us going? I am still unsure. It was much to do I think with the fellow Jewel Merchants (this is what we began to call ourselves) we met from time to time on the lonely, winding roads. We shared stories of our plight and were amazed. We did not know that there were others like us who had been so trapped and lonely, and who had the same dreams.

And so we started journeying together. We did not know where we were going precisely. The roads had changed. They seemed to loop around on each other. They were bumpy and led by treacherous ravines and up bleak hillsides. We stumbled and pulled each other up when we fell. And, all the time, we could hear far away the sound of the town. Once in a while, we thought we were near, only for the next day to see our hopes dashed and the silence fill the countryside once again.

Oh the many times we almost gave up! We fell into telling each other things would never change. And a few tried to get back to their caves, or threw out the jewels from their cart, despising their abhorrent erstwhile dreams as nightmares or fantasies. We were so close to the end. In both senses of the word!

And then one night, we camped close to a river. And a few of us fell to telling our tales and shared them under an elm tree. And more and more of us came – it was like magic. First one merchant appeared and then another. And soon there were hundreds of us. It was like some sort of inauguration – meanwhile our carts seemed ablaze, it was as if the jewels were being polished once again like new under the glow of our fires and a large orange moon.

We shared tales that we had recently heard – of Stone Cutter market stall holders beginning to try to sell the jewels they had stolen from our friends; of a few of our fellow merchants that had broken through to the town somehow and begun to spread the word – that we were coming; of fights and arguments about the worth of the old stones versus the new; how laws were being re-written; how some merchants were being cast into new prisons; tales of the danger of jewels were carved on the temple walls. They drew pictures of us with long noses, mad eyes and wiry bodies. Some said they pitied us and wanted to cure us with their stones.

And that was when we decided we had nothing to lose. We could see they needed us as much or even more perhaps than we needed them. That our travails were worth the struggle. That there was a different vision…

I wish I knew the ending of this tale. We are where we are. A few of us have stolen in and preach – but more importantly try to act out the kindness we have learned – in the market place. We are still isolated and often alone. A few of us have managed to set up stall, and a few of us have exchanged our jewels – albeit it at a lower price than their true value. We do this to spread the news. No, that sounds too religious. We cannot do anything else any more.

It is not easy. But we are beginning to meet more regularly on the hillsides. And every time we do, we feel ourselves strengthened. And we notice that our jewels glow more brightly.

We know there are many still on the edges of the towns, setting up temporary villages. We know there are more yet still in the valleys and the caves. But we know too that the Jewel Merchants are journeying as we speak, that they – we – bring something more valuable than all stories, all words and all separateness. Let the tale and jewels be shared.

 

 

 
© David Gilbert, 2017

What’s Your Dog? Dealing with 2017 and all that

What’s your dog?

There isn’t resolution. Just a sense of need. To be as kind as possible seems the only thing worth doing. In my personal and professional life. And it is the only thing that seems to be a sensible anchor and effective, efficient mode of being in the confusion that is re-entry into my work, into a troubled 2017, and at home. And perhaps even toward myself.

But I rant on Twitter. I can lapse into assumptions that all Brexiteers are ignorant racists. I shout at my kids. I despair at the world. I cleave to safe opinions about how the world and people work. I am emotionally triggered by anything that Trump says.

It’s never my fault that I am triggered – of course :-). it’s always the other person’s. And the more that people don’t see this, the more the sense of wrongness and of being wronged is reinforced. And round and round I go, now with an additional note of self-pity and reinforced powerlessness. Sometimes we have been triggered intentionally. It is a conscious game that the haters play – People like Trump, Farage and the rest of them know this. And they revel in our reactions.

Sometimes it’s a less conscious game.

Whatever. The effect is the same. Every time I am triggered, I feel my life force drain away. When destabilised, we hate back. This is the world we risk exacerbating.

Some say mindfulness is apolitical. I disagree. When I am centred, when I have slept, when I have eaten, when I breathe in response to provocative opinions. When I can sort of see where people are coming from – even if their values aren’t mine – I am more able to respond in a way that is congruent with my own values; and to explore and question, build relationships and, yes, say things that are more sensible! I allow myself not to be swept aside by gusts of emotion and don’t serve to reinforce the yes-no, black-white, arguments, fights, wars.

And if I respond in line with my true values – particularly with kindness, curiosity and humility, I sleep better. I am no more effective when angry – actually, less so.

In my work, I see a lot of justifiably angry people – patients, users and carers who come to decision making tables with their jaws and fists clenched; health professionals (clinicians, managers, admin and non-clinical staff) tired and embittered by frenzied ways of working… And good people with good intentions turning on each other.

More than ever this year, we need to be of service. I have woken up that this is less about me and my ego (though that is still powerfully there). But if we allow ourselves to be dragged into too much catalysed anger, we risk not just our own sanity, but the future of our health and social care service, and of the planet.

How we react to provocation matters. As I wrote the above, I looked up at a football match. One player kicked another. The other player kicked back. And only the latter was booked. QED.

We need quick, small, re-kindling, reminders, to break the habitual response….

Like a dog.

This morning, I was tired and grumpy and let loose my frustrations. I went for a walk, and a stranger with a dog walked past. The dog wagged its tail and allowed me to stroke it. I talked for a couple of minutes to the stranger. I came back and apologised for my grumpiness and explained why it had happened.

And animals change relationships. There’s ‘evidence’ for that, as well as testimony. Yesterday, I was in a café. An older woman was sitting in a corner and seemed to be upset. A stranger walked in with a dog. You can guess the rest. By the time, the woman got a second cup of coffee, she was smiling. Two days ago, one of my colleagues brought in her dog to the office. It changed the dynamics. I got more done. I think we all did.

I am more tired and more grumpy these days. 2017 will make things worse. Find your way of dealing with it soon.

What’s your dog?

 

 

If you liked this blog, check out my others at futurepatientblog.com

© David Gilbert 2017

A Few Poems From 2016

A few people wanted me to put together some of my poems – old and new; some about health and healthcare (some not) – in one blog. So, here we go. Hope you like them.

___

When Mum Describes a Horse

When mum describes a horse
she has seen from her low bed
galloping across the white wall
or through it

we cough and fetch another
glass of water, slip back,
resume the wait and look past
the ward to where

the prints of hooves
on the muddy path
tracking the edge of the car park
are heading home.

Riderless, walnut-brown
we see it
race to the lip of the hill
and turn a final time.

____

Folding the Sheets

I loved to help my mother in the garden
take down sun- and wind-dried sheets
from the sagging washing line, propped up
in the middle by an old wooden pole.

She’d unclip the clothes pegs one by one,
drop them in an empty terracotta pot
and offer me the edge of a crinkled sheet.
We faced each other: partners in a dance

peering across vast cotton waves,
arms spread out, gripping our corners,
watching each other’s every move
bringing together the opposing leaves,

folding, refolding… until she reeled us in
to meet halfway. She kissed my nose
and whisked the bundle out of my hands.
The linen piled high in the wicker basket.

Now I can mirror her with eyes closed,
senses narrowing on the task and line,
opening up to the sound of sparrows,
from the branches of the damson tree.

____

The Liberian Pygmy Hippopotamus

These days, the Preferred Place of Care
(or PPC) according to academics
is The Home or The Hospice.

Dad prefers to ignore
the finality of words
and officiates from Bed 6 on Ward 11E

summoning us
with parting gifts
as we gather

in comfy chairs provided
by the Project Coordinator for the Patient Pathway (or Matron)
and Betty, the cleaner.

He doesn’t want to go home.
He refuses the sweetened pleas of bed managers
to go home. This is home.

Contained by the, at last, certainty
of the rhythmic swish of the morphine pump
and ward rounds.

He swears the profile of a golden lioness
rises glowering from the trees
overlooking The Heath

and the paths where we handfed
Nuthatches, Chaffinches and Robins.
Fewer of them now.

He is more tired today.
I feed him slow spoonfuls
of leek and potato soup

tell him that Samuel
went to the zoo yesterday
held out his hand to touch

the Liberian Pygmy Hippopotamus
almost wiped out by civil war.
That Adam wants to bring it home.

____

The Jab

I slid between rooms
Severing wires

Unscrewing bulbs
And scissoring magazines

Limbs became heavier
And heavier to operate

I sat cross-legged
Fending off evil

While the bedroom wall
Grew dangerously thin

The black house began
Its whispering plots

My brother was sent
With poisoned Jaffa Cakes

Then came the scraping
And bleeding sound

Of thousands of chairs
Falling over themselves

Midnight’s rush
Of telephone calls

Rose wailing and wolf-like
Four men arrived

Serious and muscular
The quiet jab came

And my mother’s voice:
Please look after him

____

Close Obs

I’m curled into a ball
on a thin mattress on the floor
covered with a crinkly nylon sheet
smelling faintly of sick and piss.

Outside the heavy brown door
sits Len, muscly, tanned,
with the Mirror crossword.
Not much older than me,

he’s done his fair share
of hurtling down corridors
readying needles full of Depixol
to slam into the arses of lunatics

like me I suppose.
As my sobbing slows
I hear him humming tunelessly
and clicking the end of his pen:

‘Mate, your mum said
you didn’t use to be such a dickhead.
Let’s see. Try this for starters:
French for dead-end, 3-2-3?’

_____

The Swan

She would be carried down dark roads
like they were rivers. Adrift on a wild mind
far from others, in worn out red slippers
and flowery unbuttoned nightgown. God knows
where Gran might finally wash up. We didn’t.

So mum sat up late in the unheated lounge
unlistening to The Swan, by Saint-Saëns
that dad put on to soothe her, biting
her lip and gnawing the quick of her nails
tea lukewarm, on guard for the call

from Harrow or Moorgate Police Station
following reports from a drunk accosted
by a skinny old lady ranting in German
or from a cabbie who’d tried to make peace
and been thumped repeatedly over the head

with that umbrella she carried everywhere
even when sunny. Once, she was found
cowering, taunted by teens in hysterics:
Loony, loony, mad fucking bitch.
And when dad brought her back, she’d sit

frozen, bolt upright, stiff, beaten
hollowed out by the ravages of thought
the kitchen drained and everything so still
I could hear the wind and the birds
begin to sing. Her hair wet, face white.

____

Bedsheets

The low slung bundle of thick, frayed, red, green
and grey wires that ran between the old stroke wards
curving up to the brown fuse box near the top
of the towering wooden pylons, then slouching
down and across the car park to disappear behind
the temporary canteen in the portakabin
has gone.

Once I came this way
with the matron from the psychiatric ward
to hunt for spare bedsheets. And on the way back
I stared up and thought to cradle myself
amongst their woven threads and pump of pure
energy that might wrest me from another night
on those crackling bedsheets.

These days, there stands
the maternity unit where my sons were born.

____

The Baby Starling

When the church bells stopped
and the empty courtyard filled with birdsong
I thought of the baby starling without a tail
that had fluttered into the Italian restaurant

and startled the woman
who spilled minestrone onto her best dress
then threatened to send them the laundry bill
while her friends killed themselves laughing

and the way some children
born in towns, never get to the ocean
and how I could have taken mum
to Vienna one more time. And how

when everything turned out alright again,
you looked at me and said: There, you see?

____

The World Is Full of Toilets To Cry In

Old smelly ones of course, uninspected, with cracked floor tiles, damp inglorious seats and broken locks, where one tap gushes forever hot and the dryer doesn’t work, even if you bang it several times. And where you’re not so poorly as to fail to notice the plethora of metaphors.

I can feel more at home in posh ones, conference centres, government agencies and four star hotels (you can sometimes sneak in if you’re desperate) where Mozart streams in from unidentifiable wall speakers and the soap and incense sticks, in your justifiable fury, are easily nicked.

There was one (after she left me) where the urinals were ringed in a hazy ultraviolet light like the one in Captain Scarlet and the Mysterons (though maybe I’m wrong. She said I was a lot of the time. Maybe it was white). It could be some sort of futuristic antiseptic. But it had me so captivated that I forgot. For a while.

But mostly I prefer the everyday ones, in railway stations or shopping centres, just about clean enough mostly, to let you know you’re alright in the end, not too shiny to make you feel awkward for feeling so rubbish. And at least you’re never alone. I don’t mind paying 20p for one of those.

1962 (Little Bird)                                                                                         

She looks down at me. Garrincha
The Little Bird
wins the World Cup for Brazil.
In a storeroom on the third floor

in Ramleh Prison, Tel Aviv,
next to a makeshift scaffold,
a chair is kicked. Eichmann hangs
and his ashes are scattered over the Mediterranean.

Dr. Ronald A. Malt reattaches
the severed right arm of Everett Knowles (age 12).
Later he’ll be able to move all five fingers
and bend his wrist, later still play tennis.

Marilyn Monroe is found naked.
Dr No gets rave reviews.
London trolley buses return
to the garages for the last time.

Kennedy is late
for the first Trans-Atlantic Telstar satellite image.
They show a baseball game instead –
the Philadelphia Phillies versus Chicago Cubs.

Rod Laver beats Roy Emerson
in the French and US Open,
Martin Mulligan at Wimbledon
(6-2, 6-2, 6-1)

Trouble brews over Cuba.
Eight planets align for the first time in 400 years
Nelson Mandela is arrested.
Ringo replaces Pete Best

A bear becomes the first creature
to be ejected at supersonic speed.
An Air France 707 crashes on takeoff.
130 dead.

Assia meets Ted.
Crick & Wilkins determine the structure of DNA.
Lee Harvey Oswald arrives by train in Oldenzaal
then leaves from Rotterdam on the SS Maasdam for the USA.

Three convicts use spoons
to dig their way out of Alcatraz.
My mother looks down
and calls me her Little Bird.

(c) David Gilbert 2016

A Touch On The Arm: returning to work after mental health problems

I wrote a poem once about the lack of flowers on psychiatric wards. We who are unwell in the world of feeling are doubly unrecognised. The hill we climb back to wellness is also jagged and steep with zig-zag turns.

The summer was scary. Symptoms I thought buried, returned. A Patient Director who had relapsed to patient-hood. Ironic. Fitting perhaps? I have blogged about the ‘emotional labour’ of being a patient leader before. Words as ghosts come back to haunt.

Post-recovery in the 90s, I lied on my CV about the time I was ‘away’. I called it ‘freelance consultancy’ (boy, was I ‘freelance’!). Disclosure was an impossibility for my career. Like it is for many others. Stigma was (is?) prevalent.

This time, I did not lie. This time I had an employer who not only supported my recovery into wellbeing and my role, but leaders who expressed their love for me. Let me repeat that word: Love.

I also believe it is easier for someone who is in a senior position to be open – we have already gained much professional confidence through our status, and have some credibility. It is unlikely (though I still have this story in my head) that respect for what I have done will dissolve because of what happened in the summer. But what of those more ‘junior’ (not a phrase I like, but you know what I mean)? Can they be as open as me? Hmmm…

I live in hope that my organisation manifests equal love and support for others who are unwell in mind and body. I will be looking for evidence.

Recovery is a dangerous time

A few things though, before we get too dizzy with accolades. What’s my learning about that difficult step back into the office?

I have also written previously that recovery is a dangerous time. When you get back on your feet, they are wobbly. I have a picture of a baby gazelle in my mind. The echo of stifling thoughts and uncomfortable feelings have not disappeared. You are easily triggered. The narrative you have told about what happened – the usual bullshit (I am no good, a failure, can’t do the job, etc) are rocking around. You may ‘look’ better. The scars are invisible and still sore.

When I got back, I was hugged. I was bowled over by affection. One friend who had also been away with a physical problem (of course with emotional consequences too) asked: ‘Did you get a card from the office?’. I said, yes of course. And flowers. And wonderful chocolates. ‘And weren’t those messages from everybody amazing’? She went on. ‘What messages?’ I said.

Then I realised what had happened. The organisation, quite rightly in terms of confidentiality, had not disclosed my illness to others. I had not had the honest conversation with someone to say ‘you can tell people XYZ about what happened to me’. Hence I got a card, but not one signed by everyone.

I now remember that when I got that card, with a ‘love and support from all your friends’, it felt like I was disconnected from all those people who could have voiced their support explicitly. That extra layer of protection further isolated me. I should have said something. That lack of connection made the return to office more unknowing.

The touch on the arm

But here’s the main thing: One or two people came up to me and gently touched me on the arm and asked ‘are you OK’? That touch said so much. It conveyed deep concern, love, kindness. And also uncertainty – not about how I was – but about how to open up a conversation about my mental wellbeing.

To me, and I may be wrong, it said ‘I am here for you, I am happy to listen, happy to be open, but I am unsure how much you want to share’. We needed a way of holding a safe conversation – on my terms of course, but also one that recognises the limits of what others are comfortable with.

I talked to some people who, courageously, said ‘I don’t want to treat you with kid gloves, or patronise you’. We went on to talk about how to have a proper conversation about my unwellness and capacity to take on the refreshed workload. We agreed that if I was hurt or triggered by things they did or said, or if I felt that work was too much, it was my responsibility to say something. And that they would be open to challenge too. Can your organisation or the people within it do this?

Opening

And then there were the people who sidled up to me to talk about their own vulnerability. For me, there are only two things that guide me in my life and work any more – do your best and be kind (to yourself and others). And it is in these sorts for encounters – furtive, gentle, open, adult – that I feel I have most been able to give of myself. By opening up, people have opened up to me.

I know many reading this will have experienced this opening. It is one gift we bring from the cave-world. The touch on the arm is the beginning of something different – it is a strike of connection and light.

As a gibbering and convulsive 2016 comes to an end, what else can we hope for? Keep on doing your best. Keep on at being kind.

Thank you to all my work colleagues – friends – at Sussex MSK Partnership and Here. This is my touch on your arm.

 

 

 

(c) David Gilbert 2016

How To Be Unhappy (and why we should be)

Christmas is coming – seems a good time to say bollox to happiness. Not in a Scrooge humbug way – gentleness and kindness is still king (or queen). But in a ‘you’re a fraud’ sense. Like Santa Claus perhaps.

Striving to be happy has made me unhappy. It was always ‘out there’ if only I could get to it. Always lying in amongst seemingly happy (aka fun-filled, laughing, stimulated and stimulating) people. Just over the hill as I went round the bend.

My favourite Gary Larson cartoon (where has that genius gone?) was a sheep watching the news with beer and cigarette. The newsreading sheep was saying ‘now news just in, the grass really is greener on the other side’.

And the more I tried, the more unhappy I got. Envy and jealousy dogged my life. And, in part, led to my nervous breakdown at 25.

Choice? What choice?

When I realised (too late) that it was my own thinking and how I created meaning that was at the root of my feelings (sensations plus thought in my book = emotion), this should have been a liberation. It was another cage.

The shiny shiny positive brigade talk about ‘choosing to be happy’. This is clearly bonkers and a gesture of fear and denial regarding the inevitability of sadness, misery, and the coldness of a planet species bent on self-destruction.

And ‘cheer up’ in all its subtle manifestations (e.g. “Avoid negativity and negative people”) is only a call for the already fortunate to avoid those who have less luck. Emotional apartheid.

While the emerging brain ‘plasticist’ brigade are making amazing discoveries, generating (perhaps exaggerated) ideas that may ‘prove’ that we can rewire our brains, this is at the micro level thus far.

Anyway, finding that our brains can change is not so much the key to waltzing about the planet on a permanent high but about being more ‘balanced’ (i.e. Not reacting in such patterned and habitual ways to stimulus).

Imagining I was ‘responsible’ for ‘choosing’ my own (miserable) feelings, only made me more unhappy. Because I didn’t have the ‘means whereby’ to choose to feel differently I was still a slave to physiology and neurology. And deepening the grooves of faulty thinking and wiring in the process.

I once got into affirmations. When I told my psychotherapist that I was chanting ‘I will change, I will change… ‘ she pointed out gently that this was likely only to lead to me changing my underwear more regularly than was strictly necessary. Please note that this was the only time I laughed out loud in three years of therapy. Also note: therapy does not make you happy.

And out there 

Meanwhile the smooth external cultural influences truck on. We can criticise Hollywood romance or glib adverts that say the latest perfume will shift your life to fulfilment. But it’s all around us, and our brains are vulnerable to nervous system agitation and seduction.

And if you’ve supported Leeds Utd, you’ll know what it means to have a chronic susceptibility to external influence. Then add some, for the constant assault and battery of our attention grasping world.

I don’t think it’s just because I’m a Leeds fan that I suggest we should strive to be unhappy.

It’s not about being deliberately miserabilist – there’s enough of that in the news and that’s just an equal and opposite reaction. Life is amazing as well as unjust. And we must celebrate the good.

Contentment – or more deeply, acceptance – is the real happy I think. Sounds like a grey old fashioned shade of happy. But it’s good enough. And good enough is good enough for me. It’s not a fatalism either. It’s just a bit of emotional detachment. I say ‘just’, but it means work to get there.

And as many know, a different sort of warm wave can wash over you when you can just let yourself be for a while. Out of a light grey comes a little blue. It’s taken 54 years to get close. May you find it earlier.

Arise ye unhappy folk

We should counter the culture of happiness – challenge people proclaiming we have a right to be happy. Where on earth did that fallacy come from?

Some bright political spark will point to it all being part of capitalism or neo-liberalism or some sort of ism that (partly) lets us off the hook of some deep delving into ourselves.

If we can see it as OK to be unhappy some times, even a lot of the time – To be sad, fed up, grumpy, frustrated, itchy with the meaningless of it all, empty inside every now and again, negative… hurrah!

…then we would pave the way personally (I am not there yet) to accept ourselves a little more and could watch the river of life flow a little more easily both within and without us.

Ironically, it may be the way to saving many like me from getting ill in the first place – talk about primary prevention! And eventually lead to the redundancy of drugs, psychiatrists and holding bays (I mean psychiatric hospitals). I said eventually. I’m not stupid.

Hang on

By the way – I am not trying to reframe suffering so that it is OK to be in extreme anguish or suffer mental health problems – it’s not and to be so should come with a ‘I am not guilty’ t-shirt on psychiatric admission (didn’t get that t-shirt)

Nor is it ok to depict various shades of unhappiness only as a spectrum. There’s something qualitatively different between fed up and ill in my experience anyway. Been there. It’s shite. But that’s another story.

Overall, I bet life would be a bit better if we could say bollox to happiness. I wish someone had said it to me convincingly before I went hell for leather for happy happy and ended up in helly helly.

I bet there’s a book out there already and I’m only repeating what they’ve written (sorry – no deliberate plagiarism here) but if not, maybe I will write a self help book and make millions. That’ll make me happy. Maybe.

Repeat it to yourself – I am happy to be unhappy. It may not take the pain away, but it might give you a little distance from it every now and again. And maybe, just maybe, will ease things a tad.

Be gentle with yourself. Strive to be kind. That’s where it’s at.

(C) David Gilbert 2016

The Makers Of Bethlem – Words inspired by Victorian Asylum patients

 

 

“Pills are ok, counselling is ok and it will get you back on the streets, but what keeps your mind alive is what you learn here. That’s what it’s about – keeping your spirit alive.” – Lee, Bethlem artist.

I was recently invited to be part of the Bethlem Gallery’s ‘Reading The Site’ initiative – one part of the stunning ‘Reclaiming The Asylum’ series of events.

My task was to spend a day reading historical material from the Museum of the Mind’s archive – letters from the Victorian Asylum’s patients and clinicians’ notes – and write in response.

The Bethlem Gallery

The Bethlem Gallery is situated on the grounds of The Bethlem Royal Hospital. Managed by a small, artist-led team, the gallery provides a professional space for high-quality artwork and fosters a supportive artist-focused environment. The artists are connected to the hospital, as current or former users or carers.

The gallery is an amazing place and is a platform for experimentation, collaboration and skills exchange. It helps develop the careers, experience and expertise of the gallery artists by creating opportunities for professional development. Its successful artist-in-residence projects also work with patients and staff on site to improve people’s experience of the hospital environment. It sits in the old hospital administration building that has been lovingly restored and also houses the Bethlem Museum of the Mind – a fascinating collection that depicts the history of mental health and care as well as the story of the hospital itself. I recommend a visit. Highly!

Have a look at some of the incredible artists’ works at http://bethlemgallery.com/artists/

I spent a magical day at The Gallery and spent a lot of time chatting to the friendly artists who wandered in and out. One of them took me on a walk round the vast site pointing out the wildlife and regaling me with stories. Others brought me cups of tea and chatted about their art work, lives and mental health experiences. Beth, the curator, told me about what they did, and the relationship between what they do and ‘outsider art’ and ‘art therapy’ (you can read about that on their FAQs on the website).

I felt somehow that I had come home; that this was where I belonged – at the crossroads between mental health, real user engagement, art/poetry (and good coffee and cake).

The archive

The letter below was one of many in the archive from patients or family members. The deference displayed towards the clinician, alongside its surreal narrative and (paradoxically) deep insight into ‘truth’ astounded me. See what you make of it.

__

Dear Sir

I hope you do not think I went to Bethlem before I should. It was on January the 4th that the egg tasted to me so strange, and on the following Monday morning I began to rub my knee just as I have seen my sister do, the one she had injured, without any will of my own. I knew nothing was the matter with mine. Another morning my mother looked to me quite an ugly old woman for a moment. I shut my eyes for a minute, and when I looked again she looked her old self. I knew at the time she had not changed. With the exception of the egg, which puzzled me, my illness quite differed from how I felt five years ago. Then everything was confusion. This time I used to lie down quietly and have pleasurable sensations, and many things that are difficult to understand seemed quite plain to me then.

I hope you will kindly excuse this note. I feel it to be so very defective.

Believe me, dear Sir, yours very gratefully,

Jessie Mary Cowtan

__

In response to the letter, the artists I met and the walk around the grounds, this is the poem I wrote. The intention is to connect latter day voices with the voices of present day artists. And to explore whose voice counts (in history, narrative, art). One of the artists I met described himself as a ‘maker’. That phrase stuck.

The phrases in italics are taken verbatim from a book – Presumed Curable – that contains clinicians’ notes reporting how patients had spoken. Please note that the poem reads better on a PC than a smart phone, as a ‘smart’ phone is stupid when it comes to line breaks.

__

The Makers of Bethlem
For Albert, Keith, Matthew and all the makers

If I may Dear Sir

For done wrong,
when the daemons flit
and the quiet unplugs
the underbelly’s rush
I have been too long
at the margins.

From my room – the escape, the bolt-hole, the refuge, the asylum
within a second skin, a filter, a lens, a medium
through which I see you – more clearly than you see fit
or can diagnose – in the seeing of me.

Come closer. These red stripes, diagonally across the paper –
these lines – are the slashes across the past,
my wrists, my neck, my arms.
Feel you safer now to near or care?

Once it was all about morality and sin
I signed my name ‘Petrolium’
then crouched and offered up a litany:
I am the wrong man
My left leg at all times troubles me
The peculiar shock from my head
I have suffered such strong constipation
My food is hard and changes before I swallow
I am upset by the noise of spoons
Or sight of the immoral stethoscope
I am not my mother’s child
I am a great lump of pudding
I speak in rhyme and make of all around me, kings

 I wore strong clothes
And was immersed for days
Gloved now,
I was going to have to finger out my eyeball
I don’t know why I took the parrot out of its cage
And wrung its neck
But tell me why
Any of this is more inexplicable
Than the cause of my being here
When I lie down, there are pleasurable sensations
The smell of egg is strange
I see plain.

Then and now done wrong,
the causes adjust.
We are no more or less lonely
than before, again working with skin and light.

Still, everything is wrong and I am not worth anything.
Life is different from what it used to be. I am ruined
in a thousand translations of when and where
or DSM.

If we are to be found dead
in ye olde brooke or modern reservoir – water is water.
The crow is the modern phoenix – let us pray
to whatever turns us in or on or
makes us out.

Some of us have learned despite,
bring back brick to life.
With leave to walk the springy grass
around the acres by the forensic unit
have begun
picking up bits of wood and taking them back to the room
to paint or work on, then leaving them again in the hedgerows, to see
what happens when they are worn
by the unpredictable elements.

I walk the grounds from six a.m
bring apples to my friends
superior to those you’ll buy in supermarkets.

Did you know that ivy strangles the tree
but when you boil the inch long leaf stem
for as many hours as it takes
for SSRIs to breach the capillaries
the components in the broth
help you breathe more easily?

There are deer and badgers.
The green parakeets continually break
from the woodlands near the bus stop
where the couples quarrel.

Have you listened to that dead tree
bolted and split by the storm’s brash light
harbouring original insect life.
Feel its jutting splintered trunk smoothed
by the wind twisting
around the old administration building.

Can you see it, a totem? Faces gnarled,
gargoyles from the ages
staring from its circumference
out to the fields
or would you have me real?

I am artist. I am maker. I man woman engineer.
I call myself – I call – what I will.

We are the makers,
We are the makers
the muckers, the mucked,
the mocked, the poxed,
the painters, the penned,
the maskers, the markers,
the makers of Bethlem.

I have built a cardboard fire place in my new room,
real with flame.
Come find. Come talk.
Or is it cure you need?
Must we still kneel? Comply?

I work with everything required.
Will you?
And find that tired time has slowed.
Portraits in oils and framed crests
initialled in the old Boardroom
don’t safe speak to me.
I view all things plain.

Your words once cheered,
now I fear I am not so much imposing on your time
as you mine. We
have other paths to run
between and across, beneath and
above, beyond asylum.

 

__

If you liked this post, do visit futurepatientblog.com for more musings on healthcare, patient and public engagement, mental health and poetry

If you want to read more poetry about my own mental health experiences, you can do so here and here

(c) David Gilbert and Bethlem Gallery, 2016

If I Still Scream – Three Reasons Why Trumpism Hurts

Many more qualified politicos can comment on the Trump debacle. I was trying to disentangle the feelings and thoughts I had. A US friend – while tearful – said my thoughts made sense and helped a tiny bit.

So, this is a personal take on why it (and Brexit, etc) feel so bad in my heart and head. And why it may feel particularly bad for someone with mental health problems. And what I need to do about my own feelings and thoughts. Maybe this might help someone else. That’s the intention.

So, this is not clever, not academic, but it is deeply felt. And it’s short.

Three things that hurt

Firstly, the bewilderment, bafflement, incredulity and dismay about what has happened – a welter of questions that mask a deep disorientation… ‘how can they/he do this?’. WTF? The narrative does not make sense, the feeling that I (we) have been duped, and that the process by which this came about is not understandable (though rationally pundits can explain it away). I don’t get it. I need to rip up my story of how the world works or was supposed to have done. My middle-class comfort has been blown. Why have I been so stupid. Tears for the past…

Secondly, fear for the future. The crisis of uncertainty, the unpredictability – ‘what next’? I am thinking about how to explain Trumpian madcap dangers to my twelve year old and deal with my/our fear for our childrens’ futures. I am / we are unsafe, exposed to the winds of change and discomfort – what was real for others (less fortunate) is coming closer, the winds of change. Tears for the future…

Thirdly, as a result of bafflement about the past and fear of the future, comes a sense of powerlessness. There seems a futility of ‘agency’. How am I, or we able to harness my own, let alone the collective, good in the face of the abandonment of ‘reason’, the loss of fact, evidence and logic plus kindness, humility and tolerance as valid currencies. What can I/we actually do? Because, so the depressive logic goes, we can’t change anything. What’s the point? Tears for me…

Echoes of mental health problems

And then I thought how much of a parallel this sequential sort of reasoning is to my own anxieties and depression – and perhaps other people’s mental health….

During my troubles, I couldn’t understand what had happened to me, I didn’t understand why this had happened to me; then the overwhelming sense of fear and uncertainty about what will happen to me and hence a sense of lack of control over myself and my mad head, or my ability to navigate the world.

And I am triggered because of the resonance between my own recent mental health problems and this ‘collective breakdown’. I am we. As a Jew, it is hard also not to see the current state of the world as deeply resonant of the 1930s rise of fascism.

What can I do? 

I think that if we succumb to despair, in a strange way we are reverting to primal feelings and a reactive habit that is as deep and strangely cogent as the anger and rage that fuelled Trump. We sink to ‘their’ level. So, there is a political and moral duty to lift ourselves and be better and bigger than that.

And, if we can (and this is NOT easy), we need to avoid too much self-pity – we have a duty to still help others, partly because if we indulge in that self-pity and sense of powerlessness, ‘they’ win twice (I know I know I should not be too much ‘us and them’, but that is beyond my spiritual capabilities just at the moment…. Not all of us can be Ghandi).

Moreover, I still have to believe in the power of kindness. I am not sure ‘all you need is love’. And I am still unsure that love is the most powerful force in the universe (though I want to believe it). But, when I am lying in bed awake at 3am, there does not seem much else for me to anchor myself to.

And ‘nobody said it was easy’ (Coldplay). Recent events have ruptured some of our (my) smug assurances about what life should be like. Maybe disruption of our cosy narratives is not such a bad thing. Maybe it will motivate folk to get out there…

And this, by Elie Wiesel, the holocaust survivor, is the clincher for me. We may be living in an era of rising fascism, who knows…. Much is still speculation. Sometimes we tell ourselves stories, even bad ones, to try and make sense of stuff. But this, by someone like Wiesel has always had tremendous resonance:

One of the Just Men came to Sodom, determined to save its inhabitants from sin and punishment. Night and day he walked the streets and markets protesting against greed and theft, falsehood and indifference. In the beginning, people listened and smiled ironically. Then they stopped listening; he no longer even amused them. The killers went on killing, the wise kept silent, as if there was no just man in their midst.

One day a child, moved by compassion for the unfortunate teacher, approached him with these words: ‘poor stranger, you shout, you scream, don’t you see that it is hopeless?’

‘Yes, I see,’ answered the Just Man.

‘Then why do you go on?’

‘I’ll tell you why. In the beginning, I thought I could change man. Today, I know I cannot. If I still shout today, if I still scream, it is to prevent man from ultimately changing me’

(From ‘One Generation After’ Elie Wiesel)

Get up

Whatever you do, give yourself some time to weep, take care of yourself, and others. Then, get the fuck back up. Get out there and help change things by being more kind, more generous, more loving… whether it ultimately changes the world, who knows. But it’s the only way to preserve yourself. And who knows, maybe all of us in the future.

There may not be light at the end of the tunnel. Or maybe there is. But we can carry one.

Let’s Talk About Power – Here Come The Patientistas

Let’s Talk About Power

Is the fact that we don’t know what to call ourselves – patients, users, clients, etc – or whether we are patient leaders, partners or advisers, etc symbolic of a deeper problem? Divide and rule.

As long as there is no collective identity for those who have life-changing illness, injury or disability, those who struggle with their health and well-being, or those who have long term conditions, then we allow ourselves to be labelled by others and are a fragmented bunch. This may also be why we sometimes ‘compete’ for space, get involved in internecine squabbles over who should be sitting at the (limited places at the) table. Divide and rule.

Maybe it’s not just the name. Maybe we are too coy about talking about power. Maybe we are too nice. We will happily argue about semantics and get upset if people don’t call us the right thing (understandably – words come with baggage), but we still will prefer to talk about words like ‘empowerment’ ‘activation’ ‘partnership’ ‘collaboration’ ‘co-production’ etc and avoid using the P word. Why?

Do we – as ‘patients’ still seek permission before we do stuff? Wait to be ‘let in’? That’s because there aren’t enough of us doing the ‘letting in’. Because there aren’t enough patients (place any word you like in there) in power to do the letting in, opening the doors, the flood gates…

Meanwhile, the well-meaning, policy wonk cartel made up of the Kings Funds, Health Foundations, Nuffields, etc continue their insightful diagnostic analyses into what’s up with health systems, but fail to get the real solution – that patients as partners in co-decision making are the solution, and the route by which to find the solution. That, without ceding power (why would professionals want to do that?) then the NHS will continue to fail. But then again, those organisations, like the rest in the NHS, have few patients at senior level, none in their exec teams and few on their Boards. Same is true of most ‘patient’ organisations, with a few shining exceptions.

Those in power do not want to talk about power. After all, if you are in power, you may have a blind spot about how powerful you are, and/or won’t want to upset yourself by thinking you should share it. Maybe it’s a bit scary. Who of us wants to let go? It’s a common feature in human history – those with privilege will pretend that it is not about privilege. Those in power will disguise the rules of the game and, if pressed, will find marginal things to focus our plebeian attention on, rather than redesigning the rules.

 

 

Tinkering

Yes, the system is tinkering with patient-centred solutions at individual level – the rhetoric of shared decision, self-management, access to patient held records, etc. But without power at a macro-level, there is no change. Time and time again over thirty years in this exciting but wearying world, I have seen ‘innovative’ projects, ostensibly patient-centred crumble under the weight of professional capture. Perhaps it’s time to match our stress on individual partnerships and better relationships, with a bit of muscle and robust thinking about power and institutional structures.

I was listening to Woman’s Hour, and hearing inspirational testimony (better than that derisory word ‘anecdote’) from feminists who have changed the world. One said ‘it’s about changing the terms of the debate’, and went on to argue that you cannot do that without having women in power and leading organisations. Precisely.

Meanwhile, healthcare policy is a patient-free zone. No real power in care.data. No power in the Lansley Reforms. No power in STPs. No power in the Junior Doc debate. No power. (See ‘The Hedgehog – what happens when policy making is driven by fear‘) And poor policy making is at the root of much of our problems.

We can continue to muck about at the edges. We can continue to get ‘involved’ and argue the toss about whether we get paid more than bus fares to turn up at meetings. We can continue to get involved in projects as reps or story tellers. We can continue filling in questionnaires and coming to focus groups. We can continue contributing ‘case studies’ and ‘tools’ for well-meaning professionally-designed resource materials. But much of this is a waste of time, if policy and practice isn’t changed at root and branch level. And how will this happen? With power.

 

The Outsiders

It is beginning. It is beginning outside the ‘system’. Entrepreneurial outsiders like Michael Seres (@mjseres), Denise Stephens (@enabledby) and the like are shifting the terms of the debate in terms of innovation – inventing stuff alongside patients and service users that really change lives. Folk who are cleverer than me and au fait with the online world are taking apps and wearables and putting control of data and organisations in the hands of users. And of course user-led disability organisations have been arguing for decades around power and who controls the agenda.

Now we need ‘inreach’ – we need to be like an octopus and reach into the systems and the organisational structures and change them. Ironically, the citadels of power are desperate to change. Healthcare professionals are beginning to reach out to work with us – can see that we can reframe problems, bring different solutions, change dynamics, etc. (See ‘The seven things that patients bring‘). But at the same time, many higher up in the hierarchies are shit scared of giving up power and money.

Power doesn’t necessarily mean bossing people about. It doesn’t have to mean wealding a whip. But it does mean, as one canny service user said last week, ‘putting my nose into every part of the business’. It does mean being present when people are deciding on where to put hospitals, where to divert money to, where and how staff will be utilised, how to plan for the next five years. It does mean asking questions at the heart of healthcare and taking part in the art of decision making.

Yes we need to model the sorts of behaviours we expect from others. But, real leadership can only come with a shift in power and influence at the top of health care organisations – as well as the middle and everywhere else.

You have to equalise power distribution, as well as model that equality once you get there. You have to re-balance the scale by adding a little weight to one side.

We can’t shift to prevention agendas, peer-support, better involvement of the voluntary sector (code words like ‘upstream’ and ‘devolving’ abound) without shifting the money. Shifting money might (or might not?) mean fewer healthcare professionals and (definitely) more people who know about patients’ and lives in their communities. Sorry, it’s not always a zero sum game.

And, yes there will be losers. Let’s get real and have those difficult conversations in the open. The STPs would have been a good place to start, but it’s too late for real engagement there. They are a disaster waiting to happen because all conversations so far have been in secret.

 

More than desirable

One or two Patient Directors in one or two organisations aren’t enough. Nor is a commitment to co-production. We could start by making it ‘desirable’ or even ‘essential’ on staff person specifications that applicants should have ‘experience of being affected by life changing illness, injury or disability (IID)’. And interviews should ask how they plan to bring that expertise and insight into their role. At least half of all jobs in NHS organisations should go to people who primarily identify themselves as people with a LTC or IID.

We need patient-led journals, patient-led think tanks, patient-led conferences, seminars and events, local and national patient and carer networks and access to, and real investment in patient leadership training. And if the system won’t fund us to do it, or we don’t get permission, we should find ways to do it ourselves.

Yes, it’s hard. Yes, we want our work to be ‘embedded’, but often ‘embedded’ comes to mean plagiarism, co-option and neutering. Isn’t it time to take control of our own agenda, as the feminists have?

We don’t need permission. The heterogenous and fragmented individualism that has come to be the hallmark of a divided movement, could be our strength. We are everywhere, working in diverse ways. But we have to step up and talk properly about power.

Here come patients. Los patientistas. Patient-citizens? PaZiens? Who cares. Whatever the words we use, let’s make sure we start talking about power. If not us, who will save the NHS?

©David Gilbert 2016