Category Archives: Uncategorized

Throwing a Sickie – why I am pleased to have been honest

I am pleased that I was honest with my employers about taking some time off. I have been increasingly stressed over the last few weeks for personal and professional reasons, and entering a danger zone. I woke up on Monday flat out, fed up and unable to get in the car and drive around the M25 to Brighton.

It seems easier to tweet for mental health awareness and an end to stigma, than to end stigma in your own head. I pondered for some time whether I should push myself to go, lie that I had a cold, or find some other wriggling way out of the truth. I am still worried about colleagues’ views of me – whether they see my propensity for anxiety and depression as a weakness, whether they think it signifies some lack of leadership quality and whether they will go unnecessarily hard/soft on me.

And if I am worried – someone who has got a fair way in his professional career and has many privileges – I can only imagine what goes through a 23 year old’s mind who may not have the same professional foundations. Or if I was black.

My organisation has responded well. My colleagues have been concerned and encouraging – telling me that nipping this in the bud is a good thing. Even suggesting that I take the whole week off. Would you or your organisation do that? I hope so.

Meanwhile, I have been working on accepting the state of mind, and with it the gnawing worry that I am going to have a more serious and scary relapse. I have managed to shelve some of the guilt about doing nothing and told my ‘should’ demons to fuck off. Mostly successfully. Being in nature, walking, writing, being quiet, receiving messages of support and friendliness, napping with the cat on my lap… means I am getting there.

I have also taken some ‘positive’ thinkers to task. I find that ‘acceptance’, ‘gentleness’ and ‘quiet intention’ with yourself, others and the world, is the only route back to a space where you can be more resilient. Most people who advocate being positive do not understand the hard work that must go into psycho-physiological re-wiring and are ignorant of the effects of trauma and socio-economic forces.

Trying to be happy has never worked in my life and serves up even more guilt. Of course it would be nice to get there, but actually I am OK wallowing for a bit.

I’m a good hippo in the mud, and can even dredge some poetry from there. And yes, we need to carry on doing stuff in the hope that the feelings come back – but don’t give me that shiny ‘happy’ nonsense. Contentment will do. And it will come. Slowly.

It is convenient for a society and for individuals in positions of privilege to advocate for individuals to change their heads. It means they don’t have to think about their own demons and can project onto others.

Mental health awareness at a societal level needs to be mirrored in relationships. This can only happen by ‘awareness’ shifting into understanding and acceptance and through small bold behaviour changes and personal interactions.

So, I hope that the next time you are bordering on entering your fear-field of mental health problems, that you ask for what you need and get the right support.

 

© 2017 David Gilbert

 

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As Incredible As Love Is – some winter poems

My second poetry collection, ‘Elephants (Fragile)’, published by Cinnamon Press will be launched on Wednesday 21st Feb 2018 at The Bethlem Gallery. I am performing some of those poems at ‘Drop The Disorder’ event in Brighton on Friday 16th Feb 2018.

These are recent poems, with a wintry feel.

My Bench Is Misshapen

my bench is misshapen
I cannot sit properly

someone strong or something large
has unmoored its foundations
ripped its legs from the soil
brought up the rock in which it was rooted
for no reason as far as I can tell

maybe they wanted to carry it away
but it must have proven too heavy

now the poor thing is buckled and squats
low slats slumped across its width
like a tired smile

I find myself sliding sideways into the middle
stretched out almost horizontal
until my knees, neck and back
begin to hurt

it is sad for such a bench
to be so unhinged and slouched

I think of all the walkers deserving of rest
who now can’t

Something Is Wrong

Something is wrong
that I let lie heavy all morning
in my belly

a mangy dull thing
some blood-sucking beast
my gut writhing like a bucket of worms.

This afternoon I fish it out
rotten canker, stench of deathly pig
shrivelled, squirming

boot it around the park
like an old tennis ball
left on the path by a dog

beat it with a cricket bat
leave it under a rock wheezing
like an empty bag in the wind.

This evening, I kicked up leaves
like a boy
suddenly breathing.

I wake at night
with something wrong.
I miss my companion.

I Don’t Deserve Hot Chocolate

Sunday in the car in the car park of the park
winter just before a dark day gets darker
staring through the spattered windscreen
at bare branches and a slew of sodden leaves
just before the gate shuts, just before the café closes.

I don’t deserve hot chocolate and definitely not
with whipped cream. I am aflame. We talked
this morning about emotions and hard-wired habits.
I text: I am ashamed. You’re right to be upset.
I love you. I will never shout like that again.

He replies: it’s fine alongside a winking emoticon
I am 55 years old, he is 14 and it’s not. I can
sit 30 years while the gates close and open
10,950 times and still and still not learn.

Clearly
For uncle Robin (1929-2006)

He is clearly dying. Clearly because
he can sense our roomful of wan souls
clearly because snow is falling in Geneva
clearly because skin is permeable
to death’s particulates dimming cells.

The tubes are smuggling slow liquid
into the suck and sigh of tired arteries.
His glazed eyes find mine. I lean in
I suppose a final time, surprised by the grip
of his bloodless fingers on my bare arm.

Then he asks me for my news.
Still that beam. Ever a searchlight.
Each of us paused in the definitive glare
knowing I have nothing to tell but his.

Then

my mother collected Pink Shield Stamps
I licked and pasted them in a little book
careful to line them up
so one day we might get a tea pot

if I did things right
she would breathe in calm
all of us exhale gentleness
and have lots of stuff

nothing I did proved any good
this knowledge burst out of me one day
like in Aliens
as I waited for a 245 from Cricklewood Lane

then my head fell across the sky in a showering of starloads
then I had to get the bus

Hungerford

I have walked across this bridge
dozens and dozens of times
when I’ve been well
and a good few occasions before that

the carriages scraping into Charing Cross
the water as near
as grey lacklustre as it was
so many drab ways to die

broken skateboards thrown over the side
I take my boys to the very spot
point out St. Paul’s
do what we like

choose to wear a hat
the brain allowing itself
to give of me more generously
but the gulls still at my back

As Incredible As Love Is

The wintry wood is leafless
and furthering heart unprotected

the comings and goings on the Piccadilly Line
urge and shudder across the vale

haunting the spare-limbed trees
and with its new found appetite

for overseeing the cold,
a low sun hangs.

We walk from the warm café
reluctantly towards a knowing

of what we cannot do against
the day to day damage of the ordinary.

Winter brings a mastery of task
the inevitable frosted ground

an ushering in of temporality
biology shaken down

to cool sense and faded will
earth stippled brown-golden with silences

hard won recognition of our own resilience
seemingly done –

winter knows
that as incredible as love is

it now has to be gut-felt
rather than evidenced by spring.

If you liked these poems, and this blog, there are plenty more at http://www.futurepatientblog.com – some on healthcare, some on patient and public engagement and patient leadership, some on mental health and several with poetry…

All poems © 2017 David Gilbert

I am kind, but please no plagiarism, otherwise I will come after you. I promise.

 

 

Transitions – Recent Poetry On Resilience

These are poems concerned with resilience again, but more about a period of transition – that which comes from age and ‘intimations of mortality’, an emerging but fragile sense of wellbeing, seeing children grow up, being inside or outside the psychiatric system and the boundaries between the personal and professional. There is uncertainty – and more than a few animals – inhabiting these tentative territories.

Several have been written as part of my stint as Writer In Residence at The (amazing) Bethlem Gallery

I hope you like at least one of them.

Please note that my poetry collection ‘Elephants Fragile’ will be published by Cinnamon Press in February 2018.


 

I Am Unused To Being Held

 

I am unused to being held
by this untrustworthy air

I am like a cat on the sill
pawing at a wasp
on the other side

tentatively, every now and again

just in case
the glass this time might disappear

I have been told that it takes
most of what you have
to lose and

much of what you need arrives
when you decide
not to leave

Until then
I keep enormously still

and sleep like the coastline
its breath, its tide
drawing out
and in

 


 

Attenborough

 

We’ve all watched the turtle documentary,
hatchlings in their thousands on the beach
scuttling toward the night’s consuming waves.
Or been eaten away by believing
in the gulf between what we have and crave,
between the past and what the future owes us,
replaying images on demand, tearing up
as the gulls rip at innocence and swarm,
or as a little one heads the opposite way,
wires crossed, back up the bloody sand
to the sound of Attenborough’s whisper:
Some confuse the glare of the hotel and street lights
for the full moon’s reflection on the silvery waters.

 


 

Raving

 Raving is one of two statues (the other is Melancholy) that were displayed at the entrance to Bethlem Hospital  between 1676 and 1815 and are now housed in The Bethlem Gallery.

I watch the woman in the pink coat sigh
at the stone man Raving by the marble stairs.

Outside, a bleached sun appears and disappears
through the strangest of approaching storms

and sky gone wrong, orange-brown, blowsy
with blown Saharan sand. Not yet rain.

His wrists are chained to each other – Thick chain
hanging loosely across his taut waist.

He leans on one arm like you do at a picnic
but his mouth gapes, bulging neck is twisted

and his left hand turned fist forever.
I guess he could stretch his arms way out wide

almost. Weathered now, he’s been yellowing
for three hundred years, monstrous

at the hell bound gates that can draw us all.
Eventually he was carried inside

when cracks appeared – he was breaking up –
and half a finger – the one pointing skywards,

was lopped off on the way down a corridor.
The woman says to her friend: I like him.

Then a pause: though ‘like’ may be the wrong word,
moves on, disturbed, past the mighty body

as the storm nears and afternoon dusk
continues to fool the flailing birds.


 

Prayer For The Unbeliever

 

The day after the fabulous day
frost in the sullen air
the drama done

you whisper, like an unbeliever
in the cold temple:

Good things always end

accustomed as you are
to loss, the psycho-physiology of fall
this familiar dwelling of faithlessness.

But it is written:
You know now how to hold on –
that is all – and that

will come to be everything.


 

Sure-Footed

 

I have long watched
the sure-footed
with perilous envy –

goats on the sheer hills,
an owl’s nightly grip,
the spider braced mid-web

while mountains spin
in the difficult wind
and fields rush by –

still in the calculated
hold of now, unswept
by fear’s gravity


 

Not The Sea

 

We should have memorised names of the roads.
But I’ve printed out a page from Google maps.
He says he will use the sat-nav on his phone.

It’s dark, like when we used to hold hands,
one or two windows already glowing.
We are walking like this is nothing –

as if by a smooth river, not the sea.
He is to have a large red bag with a strap
that I’m sure will be way too heavy.

I want to write something clever about words
and newspapers and the way words will leave
his hand and mine. I walk back uphill alone.

He tells me later there was a dog that snatched
a paper through the letter box. I remember
my first Saturday job, but that doesn’t matter.


 

Reminder

 

I run fast for you because I can,
in circles because that is how I want to live my life.

I miss the watery-sunlight
when I am not out there chasing it.

Once I went from one end of the beach
to the other.

It was miles and miles and delicious,
salted air unraveling from the froth

mouth open and face upward,
neck tilted for the blast.

See this shoulder tattoo?
That is the mark of the finest wave

that ever threw itself headlong
onto the hungriest of shores.

I promise too, that when it comes
to hobbling-time

and those slippery-shaky pebbles
threaten to fell me

down by the stand that sells fish and chips,
I will hold your hand

and with the other, reach
for another sachet of tomato ketchup.


 

Migrant

 

I ring you
and you are a different bird

liver shrivelling before the long haul
reproductive organs out of kilter
a shift in size
plumped in your cage
repeatedly banging your head on the bars.

Now you are set south-west I think
beyond the waters by the grey tree
travelling alone.

Is this all of your own volition?
Were you wired in the egg?

I expect you dead,
recovered midway to Senegal.
How casually you must cross hemispheres,
vague territories unravelling.

It must be less like A to B to A
more A to B to D to C
and back to A again.
If at all.

We blame the magnetic or olfactory,
partial explanations always – the balance of it.

Are you pursued by predators?
Once out from over the shallows
do oceanic markers underlie
the great white tides?

Is there someone out there
who can set the clock by the time of your arrival?
Like we did.

Delayed then?
A bullet in the the breast?

Don’t leave us
perplexed and unable to grieve.
Yesterday an albatross soared the eastern seaboard.
Godspeed.

I too am busy with the unknown.
That is where we live
tearing from bad island to bad island.


 

Partings

I.

you have spent long minutes studying dissolution

now can’t turn back
from letting go
balancing precariously between
intention and consequence

carried only by a forgotten act of will
and now by sheer momentum

the slow motion of the accident
revising imaginings of eternity

but this is when the line begins
unknown, to compose itself
and finds the words to fall into love with

II.

Steve’s, the busy barber’s shop, your son
forever changing in front of your eyes
in amongst twenty to thirty year olds
their steady, studiously diverted glances
vagina beards, sheared sides, partings

you capture the child on video
in the mirror looking up, uncertain
beneath a looming giant of a man, bald
leaning over him with razor ready:
‘how much of this do you want off?’

and you would kneel and gather
by the pumped up swivel chair
wounded, wildly harvesting
the blonde locks as they fall

III.

midway – you could not help but watch
the unreeling of a life dispossessed – nobody
at the next station, nowhere to go but the next

how to depart with grace, how to arrive
with a smile or disdain for where you’ve been
frozen at the loss and disconnection

who cares for bravery?
who but you cares for that disremembered place?

IV.

you were fourteen too, the dive’s arc
water rising up to collect

the collision of air, head and pool
to come
and you alone

 


 

All poems (c) 2017 David Gilbert

If you liked this blog, please see others at futurepatientblog.com There are posts there about the NHS, patient and public engagement, patient leadership and mental health, as well as poetry.

 

 

Hugs and Drugs – The limitations of ‘mental health awareness’

“We’d like to see a world mental health day where more understanding of the impact of trauma is shared rather than the medical model”. Rape and Sexual Violence Project

Yesterday, at the incredible Dragon Cafe, I read from a forthcoming poetry collection, ‘Elephants. Fragile’ (Cinnamon Press, 2018) about my mental ill-health experiences and talked about an operatic collaboration with Rose Miranda Hall and Lila Palmer on The Jewel Merchants – based on a fable of ‘coming through’ and re-valuing those who suffer. Real co-production.

Today, World Mental Health Awareness Day, there is the launch of our InHealth Associate’s evaluation report of an amazing back to work scheme run by the Centre for Mental Health. Real psycho-social intervention that could help change the system.

I am starting work as a Visiting Lecturer at The University of Hertfordshire on its MSc (online) in Mental Health Recovery and Social Inclusion. Many of the students are service users. Real inclusion.

These coincidental happenings are making me think more clearly what I want to do with the rest of my work life. This is the sort of work that might, just might, help heal healthcare systems. And it is full of joy and love.

Why don’t we get it (1)?

The other day, a friend asked me to describe what it was like to have mental health problems. He was ‘aware’ of mental health problems – knew the old one in four stats gag as well as he could say we need ‘five a day’. But lacked understanding. Really didn’t get why people couldn’t ‘stand back’ and find ways to psychologically distance themselves from mental distress. Not ever having suffered from depression himself, he couldn’t fathom why it was so hard, yet recognised that it must be.

So I told him my ‘Radio Evil’ theory – that when I have been ill, it is like a radio turned up – that the words in my head become (a) louder (b) nastier (c) more incessant. I can’t hear you through the din. And if you tell me to go running or do the things I used to enjoy, they don’t get rid of it, as I have earphones on and cannot take them off. He seemed to get that. Use the analogy if it works for you. One more person understands a little bit more now. And he says that was useful. See also my blog on The Broken Compass.

Prince Harry – thanks, but…

This left me thinking again why it is that people don’t get mental health problems. I notice that many in the autism world want ‘understanding’ and ‘acceptance’. Rather than ‘awareness’. Maybe there is a clue there.

Meanwhile, we will have a mental health awareness day filled with well-meaning rhetoric, encouragement to put yourself in someone else’s shoes, drum in well worn statistics and encourage you to be ‘compassionate’. Well-meaning, but I fear useless.

Prince Harry coming out is great, don’t get me wrong. But if we continue merely to talk about ‘awareness’ over understanding and equate mental and physical illness, we will not reach the roots of the problems we suffer.

The roots are more about the world we live in, our sensitivity to it (blessing and curse)… how we are often alone, fragile, unsupported or homeless and subsequently react (or get overwhelmed).

This government is cruel and is creating mental distress – I have friends who have been made ill by the housing so-called system and benefits assessments. We could re-label today as ‘Mental Illness Creation Day’ and it might be closer to the truth. Though: let’s also be ‘aware’ that there never was a golden age of psychiatry – that we have always been treated as out sight and out of (our) mind. In need of sympathy at most. But what I am saying is warm words won’t cut it.

Why don’t we get it (2)?

In fact, if it remains all about awareness, if the stress is on statements like ‘depression is treatable’ (that’s a foxy word ‘treatable’), we risk corralling more folk to get ‘diagnosed’. That labelling reframes identity so as to internalise symptoms and we are drawn into the maw of a medically, pharmaceutically and hospital dominated world. Check out my recent BMJ article.

Meanwhile, at a system level, we know there isn’t enough mental health money going round, so what choices are there really in the current cash-strapped mainstream system? Short term CBT, medium term incarceration or long term drugs. And the solution will not be in the genes and amenable to drugs, however ‘precise’ they get.

And why isn’t there enough money to go round for other things? This will be the unpopular paragraph. Because business managers of acute hospitals (for the physical stuff) don’t want to let go of their dosh. If you were one of them, would you give up your organisation’s income?

I have seen closely how hospitals resist yielding power and resources. There are no incentives to let go, no real incentives in the system to hire one less psychiatrist in order to let others hire half a dozen peer workers. Oh no, that would ‘destabilise’ the system.

Unless you think money grows on trees, and huge injections of cash are forthcoming (Dream on, Corbynites). This is reality. And a large proportion of the shrinking pot (god help social care) will be drawn into the biomedical-professional-institutional sphere. This is a caricature but will be largely true – those with power will be largely OK.

Meanwhile, users of services continue to lack opportunities to influence the system – beyond being lulled into focus groups and feedback sessions. See also my bog on ‘What is a patient leader’.

WMHD is not totally useless of course, and there are lots of good initiatives going on. But the ‘awareness’ approach is largely a dead-end. It ain’t going to heal a fractured system. In fact it risks making things worse if it drives us towards a system that by default cannot offer real choice and community support.

At my most cynical, I would re-label the Mental Health Awareness brand: ‘Hugs and Drugs for Poor Loonies’.

So, why is this an important week again?

Because I have decided to follow my joy. Because I will do what I can to serve. Because I will never stop speaking up.

Because collaboration between the arts and user involvement world inspire and there is a fertile and furtive space opening up for real co-production (see my blog on The Jewel Merchants collaboration).

Because the Centre for Mental Health report shows a different way forward – where psycho-social interventions can help (but will need disinvestment from traditional models).

Because mental health is where I belong.

And I can’t change it all – I am not superman, and nor are you. But I do know the direction in which I need to travel.

Go do your bit. But be kind to yourself. Have a good one.

(c) 2017 David Gilbert

If you liked this blog, do read others at futurepatientblog.com

 

 

 

When My Words Went Elsewhere – true co-production across arts and health

On Wednesday, as a professional advocate of patient leadership, I heard about how hard it is to foster collaboration in healthcare. A group of patient leaders and a well-meaning NHS organisation struggling to find common ground – vying for shared understanding, coded language, tensions between necessary accountability and over-control, the weight and freight. So fraught.

And I wondered whether true co-production in the NHS is possible. Whether we can fly together.

On Friday, as a poet, I travelled (in more ways than one) to the Bethlem Gallery to run a creative writing workshop on ‘resilience’ and then perform in ‘The Jewel Merchants’, an operatic piece, composed by Rose-Miranda Hall and featuring librettist and soprano, Lila Palmer, and Cellist, James Whittle.

And I experienced co-production on a different level, as my words went elsewhere.

Rose and I had decided to collaborate after meeting at an amazing arts and health event called Critical Voices. She brought in Lila and we realised that ‘The Jewel Merchants’ – a parable I had written about personal recovery and as analogy for the emerging patient leadership movement – could provide a backdrop for a word, song and music performance.

As our collaboration blossomed, we realised we had more than that. That our coming together was us modelling co-production in a unique way – we got to know each other, trusted each others’ different talents and leaned to let go. Rose and Lila checked out how I felt about my poems being re-crafted, rhythmically and schematically changed, mixed up and mashed up. That was a bit weird, but I was loving what was emerging.

My ideas were not being plagiarised or co-opted for someone else’s benefit. I did not feel a weaker partner and reliant on someone else’s power – things I have often felt as an outsider-innovator in the NHS.

I stayed part of the process, equal decision-maker in what happened next to ‘our’ vision. Instead of the ideas and words being crushed under the dead-weight of political necessity and external accountability, an opera took shape. I was learning about a different world. I was travelling.

And then… another layer of possibility. While I had been thinking about a separate creative writing workshop idea at the Bethlem Gallery, Rose and Lila asked ‘why not tie a workshop to the performance?’.

Since the parable of the Jewel Merchants included a scene where fellow travellers met around a camp fire to share their stories about suffering, why not invite artists, patients, people to do likewise as part of a workshop on the same day as the performance?

So, on the Friday morning of the performance, on a beautiful autumn day, ten of us gathered at The Bethlem Gallery for a workshop.

We imagined ourselves as fellow Jewel Merchants, on our long, hard journey from the caves of suffering, where we had discovered jewels that we were bringing to the citadel.

These jewels might represent all the hard-won wisdom gained during illness, disability and injury… resilience, insight into what matters in our lives and hearts, the witnessing of broken and healed relationships, the feel of powerlessness in a professional’s headquarters, the bearing of pain, the courage to lift one leg in front of the other, the emerging awareness of small things, a fragile sense of strength through vulnerability, a witnessing of real humility and shared humanity, gratitude for kindness shown, vision of a healthcare system that might, just might become centred on what matters, glimmering (and often dashed) hope, damaged trust…

And we asked participants to imagine the stories they would tell at the campfire.

And, at that moment, a butterfly flew in through the open window. And a leaf-blower cut into the silence. And we gave ourselves time to pause, listen to ourselves and write. And our words went elsewhere.

After half an hour we came back and read what we had written. It was probably one of the most moving moments of my life, as everyone shared their jewels.

There was realistic prose that described the struggle to reclaim meaning from the black hole of suffering; poetry about animals and landscapes; haunting fragments about psychological struggles and dreams. And humour, quirkiness, a different angle on familiarity, hope, tentativeness.

We all felt, as one person put it “overwhelmingly inspired”. And the room felt warm with trust amongst people who had been strangers two hours earlier.

And then, Lila, James and I performed the operatic piece – a privilege to witness the total physicality of song and cello’s voluminous embrace.

Way out of my comfort zone, I tried to make sure I came in with verse at the right time and read properly without trembling hands rustling the manuscript too much!

Three participants chose to read out their works at a moment we had created especially for the ‘campfire’ scene.

I saw three people in the audience cry (I struggled not to!). One audience member came up to me and said that they had worked with service users on their ‘narratives’ for years, but this had given him a different insight into how people voice their experiences. Another had choked on a particular phrase in one of my poems. Another called it a “strange but weirdly moving experience”. The workshop participants who opted to read their piece showed themselves to be brilliant performers.

A video of the piece will be available soon, and I will make sure there is a link here when it is ready.

We are hoping to take the workshop and performance elsewhere – let us know if you’re interested in being part of the next chapter.

Meanwhile, back in healthcare land…I talk about co-production and patients as partners a lot. I have seen glimpses of it over the years.

But over the last few months, working outside the NHS, I have experienced it properly in a different way.

In the NHS, it seems to be more about ‘fitting’ bits and pieces together and a hell of a lot of awkward and necessary compromise in order to align everyone’s existing agendas. Power plays out. It feels heavy and lumbering.

The NHS often thinks acronyms are creative, infographics innovative, and the discovery that they can signpost ‘patients’ to a local community dance class as revolutionary. Sigh.

This experience has shown me just how wrong-footed statutory mainstream services can be.

The Jewel Merchants offers a different way. As I left the Bethlem, the butterfly flew out of the window. And the leaf-blower lay silent.

If you liked this blog, do read others at http://www.futurepatientblog.com

© 2017 David Gilbert

Patient Leaders – what does that mean?

Why we need Patient Leaders

The NHS loves to unleash (sic) its buzz words, euphemisms and catchy soundbites. I’m not sure which is more depressing. Watching their footprints (sic) come. Or go.

But the phrase ‘patient leader’ seems to be sticking. What does it mean?

To be honest, when it came into my head a few years back, I laughed – Put two contested terms together. Light fuse. Stand well back and watch the fun. Patient Leader – marmite. Love it? Hate it? At least we are talking still about it. I have seen people slip back into their chairs at its mention, others puffed with a new found pride at finding a stronger status – ‘yes, that’s me’.

It was also the culmination of other questions I had: what do we call idiots like me who, instead of just wanting to heal in peace, return to the NHS in a different guise? The troublemakers, the grateful. Those who bring back jewels of wisdom from caves of suffering and want to help or heal the system.

A growing and growling gang. We need to belong, find our individual and collective identity, support each other to be effective change-makers (or health-makers, as Karen Maskell has so beautifully put it), whinge and gossip over cake. Heal together. Was there a name for our tribe? So rich, so diverse yet driven by common cause.

I don’t like the traditional connotation of the word ‘patient’. But by linking it to the term ‘leader’, it turns heads and meaning on its head – a reclamation, a bit like the gay movement reclaiming ‘queer’.

Meanwhile, I watch the failure of the engagement industry – reliant on child-parent feedback mechanisms and adolescent-parent institutional arrangements that pit representatives against professionals (or co-opt them) in tedious sub-sub-committees. And yields… not much to be honest.

Everywhere I look, power is neutralised and buffered. We are patted on the head, told to play with broken toys rather than join in with the big boys. The passion and wisdom gained through suffering and resilience is not valued. This is a caricature, but I believe it largely represents recent reality.

And now the questions – How can a patient be a leader? Who do they ‘represent’? How do you get to be one? Who decides? Isn’t ‘people’ a better term? And many more. They are good questions. But we don’t have agency in the system or collective ‘comms strategy’ to articulate what we mean. We lack the power and rely on guerrilla techniques such as blogs! And these questions are also symptoms of institutional elites feeling threatened and wanting to undermine the inevitable shifts in power (IMO).

What is a Patient Leader?

For me, a patient leader is ‘someone who is affected by life-changing illness, injury or disability who influences change through working in partnership’. The shorthand: ‘people who’ve been through stuff, who want to change stuff’. Thus for me:

1. Patient = (a) someone who has been affected by a life-changing illness, injury or disability (or long-term condition) PLUS (b) someone who is, or has used, service regularly. I wish we had a different term – one that stressed both these aspects in a strong way. Call us user/consumer/client etc and it still emphasises ‘use’ of services. Call us citizens/lay and that ignores what we have been through. I wish there was a colour for us – the ecologists got lucky with green. We are, of course, people and human beings. But we also bring a different angle to a citizen tax-payer who does not know what it is like to be years in the caves of suffering. And yes, my definition includes ‘carers’ (i.e. those ‘affected’ by).

2. Leader = for me, a leader is someone who manifests what it means to be a true leader in their way of being and doing. I lean on models of collaborative leadership highlighted in all good leadership programmes for clinicians and managers – this includes someone who has a vision, leads change, inspires others, etc etc. In other words, it’s the ‘ship’ in leadership that steers the way (pun intended).

This thinking has been helped by many people, including Jocelyn Cornwell, Harry Cayton, Mark Doughty (who co-founded the Centre for Patient Leadership) and Steve Laitner. And of course, the gang.

True ‘patient leaders’ display kindness, humility, are able to listen properly and work together. And they are often very strategic. Many with health conditions can do that, precisely because they value it so much when it comes to how they are cared for and supported. And they can see clearly what is right and wrong in the system.

But take a good look at yourself – can you truly work in partnership? Do you want to? Can you work with your own anger, and not be led into provoking it and maintaining the binary us and them? Can you bring your difference – be the grit in the oyster – and also assert a common thread of humanity? Are you part of the solution? Do you want to be, even when it is really really hard… ?

What about roles?

I have always been interested in power and justice. There’s not much point in training patient leaders unless there are meaningful opportunities for them in decision-making roles, rather than ‘being involved’ in a project or committee. Unless we have ‘Patient Directors’ ‘patient CEOs’ etc, then we can’t change the way the NHS works. I doubt feminists would accept being focus group fodder within a service aiming to be ‘women-centred’.

There are so many ways to be a ‘patient leader’. You can be an entrepreneur like Michael Seres, Denise Stephens or David Festenstein. You can be a community development activist or digital specialist like Roz Davies. You can work at national and/or local level as an improvement specialist, like Ceinwen Giles, Alison Cameron or Sibylle Erdman. You can help train and educate, or be into self-management implementation, like Anya deIongh or Lynne Craven. Or become Patient Editors (like the late great Rosamund Snow). Or any combo of the previous.

Can a clinician, administrator or manager be a ‘patient leader’? Maybe it depends what hat you are wearing at any particular time. As long as we recognise that we need both ‘outsiders’ and ‘insiders’ in the room when making decisions. What I will say is that, in my experience, when you are ‘inside’, there is a risk you can become narrow in your views – this is happening to me, sometimes realising that I can focus more on what is possible for the system to deliver than ‘what matters’. Or what I think is possible. Maybe because that is more comfortable.

Thus, in my current organisation, my role as patient director is more about creating opportunities for other patient leaders to congregate and meet with staff, than for me to be a ‘patient leader’. Or maybe that’s a role for any ‘patient leader’ – bring in others. And that’s one aim of this blog.

And if you still don’t like the phrase, don’t use it. No-one is forcing it on anyone else. More importantly, we are not going away, whatever we are called.

 

If you liked this blog, please take a look at the many others at http://www.futurepatientblog.com

And follow me on Twitter @DavidGilbert43

I also offer mentorship for ‘Patient and Carer Leaders’ and those working in the field of patient and public engagement. Get in touch?

© 2017 David Gilbert

 

 

 

The Hope Frog – poems on resilience

These are recent poems to accompany the Bethlem Gallery’s exhibition on resilience ‘It’s How Well You Bounce’. I hope you like them.

Please do visit the exhibition and/or see one of the performances, such as the one I will be in… see below for more details on that.

 

  

A Listening

 

I thought I had something
to say. But what’s best said
is like geese in formation,

late bees on lavender
or sparrows at the fountain.
The way we begin and end

a sentence, is not by words
but a listening for wings.

 

 

Hope Frog

 

Hope comes twitchy
like a frog
that your toying cat brought in,
its leg hanging off.

Wait a few minutes.
Poke it
with a stick
to see if it is still alive.

Leave it
under the rhododendrons
just in case
it’s a flesh wound.

You’d prefer it gone
to flopping around
or flies.
Wait a few days

for it to be finished off
by the neighbour’s tom.

 

Three Short Dreams of Madness

 

I.

unkind bird
beating its bluish wings
behind evening’s eyelids

its black call shuddering
from the tall reeds
by night’s ringed marsh

before it settles
voiceless against
the shush of the deeper wood

 

II.

compulsion lies just this edge of insanity – though
what is madness, but that which
is deemed too far by others – those

self-abandoning
cousins that cannot bear witness
to its unlikelihood?

 

III.

like flight       without landing
like dawn      without light

like war          without flags
nation             less

 

Four Kinds Of Nothing

 

There are four kinds of nothing
but I can’t remember the one
I should be afraid of.

Is it the witchy whisperings,
dull bird
or the silence when both gone?
Or the other –

the dreadful other – that which
I cannot imagine and won’t want
to remember even when
I can imagine it.

 

 

Meditation On Resilience

 

I am cold still for all my troubles
at the turn again told by the river.

Older, I can hear the fury a good mile off
as the quickening water is taken

and as it falls, almost taste the spume
and further, the raging silence.

What is this resilience if
what it brings is, with its aeons of thanklessness and injury,

only a chilled pool of unkindness?
And me cold still.

 

 

Words

 

We are an hour by water.
Off left, the boats come to and from.
Day sifts through me
and needs no words.

We scatter sugar from the pastries.
The sparrows maraud.
Words are a vice.
I want to say what helps us

enter a kinder field.
I want to explain that words
are human for what we carry
between surfaces.

But I am too much in love
with words that lead nowhere,
save only once in a while.
How like time they are,

refusing to be still.
I will walk in bare feet over stone
so as to feel, so as
not to write again.

 

Nocturne

 

I.

When I say we have lost the dead, what I mean is
more prosaic. We forget
the picture that hangs by the bureau,
dust clinging to its glass.

And: I have inherited my grandfather’s
time-piece, but cannot remember where I put it,
which is worse than crushing it underfoot.

II.

How does poetry come into this? An antidote perhaps
to the days – whole weeks, lifetimes – where you are taken away
from song or whatever it is that brings you back.

I have drifted so far away from stars.
What will it take – the arteries to wrap
the heart in their loneliness? The brain to clog?
The call from a friend whose mother has slipped
all the way down the stairs?

I can see you in the midst of shifting from this thought,
hoping to hang on here to this
but lulled toward an everyday density.

Where is the pause? And the recognition
that you have wandered?

III.

Yesterday, there was a dust of pollen
covering my car – come

let dust be blown
across motorways and lanes.

I move from one form
of coldness to another

having lived through speech –
the words for

bringing a bad man down,
fearing for myself.

IV.

Eyeing the appearance of jasmine,
bringing flowers belonging to green
into the firefly evening

because everything is beyond recall – insubstantially
ours – unsuspected splendour

to ambush the wanderer
turning wordsmiths to gardeners and vice-versa
both with a fondness for wild weeds, clover, dandelions
as well as buttercups, violets, anemones…

The gaze must become as soft
as the surface of the water
that meets it.

V.

Here is a reminder: We chased the mouse
from your mother’ porch. The birds returned
to the breadcrumbs. Order restored. Nice things
to look at. I winched up the vast umbrella meant for sun.
Today it’s rain. We wait through hours of rain. Me
at my book, you at the dampening place between
translating your mother to me, falling between
two tricky languages, patterning of cups of tea
interspersed with small talk – we decorate our time.
Something is on hold. Big things to talk about
when we get home. The mouse is cute, waiting
in the wings. But your mother doesn’t like mice.
I chase it away again. Persistent little bugger.
That and the rain and whatever else is waiting.

 

 Sure-Footed – a song of resilience

 

I have come too far now
to be tentative.

I have long watched
the sure-footed

goat climb the scarred hill
from below,

the owl’s grip of the night branch
while all over the field

and you of all people
walking toward the edge, admirably.

I am still unsteady.
But this no longer holds.

 

 

Chinese Lantern

 

The house is quiet now.
High above the garden
a bright red Chinese lantern
drifts between the dark trees,
glowering against the night sky

then grows distant, pale
and finally invisible.
All heat gone. Free

to be no more itself
or what it is supposed to mean.

 

I am running a writing workshop on resilience at the Bethlem Gallery’s exhibition on resilience called ‘It’s How Well You Bounce’. I will then be performing poems with music and song on Friday 22nd September composed by Rose-Miranda Hall and sung by Lila Palmer. The sessions will be based on a parable called The Tale of The Jewel Merchants.
Come?

 

 

All poems © 2017 David Gilbert

 

The Broken Compass – Personal reflections on control, meaning and choice in mental health

These random reflections are inspired by conversations about diagnosis, choice and control in mental distress. I wanted to explore my own from a distance, and see where ‘control’ lies. I hope this helps others.

The neat trick

At the best of times, It is hard to make sense of thoughts, sensations and emotions. We are an earth-bound, jumble of embodiment, winging it (sometimes whinging) through life. We try to make sense of what happens in the world and to ourselves, and adopt temporarily convenient ideological positions and habits that we like to think help. And we like to tell people about, and justify, our views. A lot.

Many of these ideological postures and habitual patterns are hard to break. We occasionally notice our physical habits, and even acknowledge how hard they are to break. But not our mental and emotional ones.

The neat trick of the mind is to think we are in control of it. But anyone who has sat still for more than thirty seconds to listen to what’s going on in there will know – I mean, really know, that we are far from in control. Try now to count your breaths in and out to 50, or even ten… distracted? Much?

How much harder when your brain is fucked? Ten times? A hundred times? For me, immeasurably.

The broken compass

When you have a physical problem, the mind usually can make meaning out of what is going on (I know pain gets in the way and distorts both perception and response). The diagnosis, its relative certainty, its attachment to purposeful treatment (sometimes) can be soothing. The mind can be a decent compass in a physical storm.

When you are in mental anguish, the compass is broken. It swings wildly.

In the last year, when I have had re-emerging bouts of ‘anxiety’ (I am not even sure this is the right word any more), my thoughts grew oppressive. The clearest I can be is that the nature of my thoughts change. It is partly to do with negativity – it may be about me, but it is as often as not about purposelessness and futility (a sort of existential angst). Or the replaying of stupid stories. And the emergence of peak feelings of uncertainty and fear.

My six years of hell when I was between the ages of 25 and 31 were preceded by ten years of ‘holding it together’ and emotional suppression. I embodied a story of superhuman strength – I was tough and proud. Bullshit.

This is why I shudder when I hear heroic tales of youngsters being ‘tough’ and ‘resilient’ through hard times, gaining lots of good exam results and being ‘good’. That was me and there was nobody to catch me when I fell later. When the story crumbled…

Mental health problems often come with the pain of having to give up the stories we tell ourselves or that others tell of us that have become ingrained. These stories must become unsustainable in order to find other stories that serve us better.

But oh, the pain of the boat’s ungovernable steerage through the hurricane. Our identity – gone. Our relationships with others and ourselves – gone. Our future – gone (it seems). What is interesting (that cold, academic phrase) is that in our hell of suffering, we believe our negative stories with such intensity – it is almost a rebound from the ones we held ourselves up with – this is real. Bad is real. Forever and forever – the devil certainly has the best tunes when in distress.

The radio

For me, it was yes, to do with the negativity of thought. But it was as much if not more to do with intensity (or volume) or frequency (the relentlessness of the fears and ridiculous thoughts – thoughts about thoughts about thoughts). I am never free of negative thought. I am never free of horrible feelings. But in periods of calm, I can watch them go by. That is why I like mindfulness.

But when ill, it is like somebody retuning a radio to a foreign station and ramping up the volume and leaving it on all night. A dwindling part of me is torn – between fighting against the noise and acceptance. Maybe mindfulness ain’t so good then. For some, it will focus them on the noise – for me, there has never been any other choice, so my healing has always been about deeper and deeper acceptance. But for others, my hunch is that mindfulness may not be right. Not sure about this one.

People without mental distress also try to balance their responses to the inside and outside world – between ‘having the serenity to accept the things they cannot change, the courage to change the things they can, and the wisdom to know the difference’ as the serenity prayer puts it.

But when you have tipped into another ocean of distress, you have little choice over what your mind does – one part of the mind fights with other parts, is the judge, the prosecution, the defence and the jury. All thought is fight, fright, flight. Over and over and…

You see clearly that all thinking is temporary and no ‘ideas’ can soothe more than temporarily – you actually have vivid insight into the lack of substance of thought, that it is a flimsy veil of identity that is easily ripped apart. But when you are in the midst of turbulence, you seem to have no distance – no detachment – no place of rest. It is exhausting on top of painful.

Diagnosis

The above is one reason why having a ‘diagnosis’ is fraught with difficulty. When I was very ill, I was desperate to have one. I was like a child demanding that my ‘parents’ (doctors) should know what was happening to me, that they could provide an explanation, but most importantly stop the pain. But a diagnosis did not ultimately help – I think it contained the psychiatrists’ anxieties more than mine!

I spy conversations on social media about the tensions between a more ‘formulative’ framing of mental health problems (and for some the desire to ditch DSM categories) and the more traditional defence of needing a diagnosis. I am cheered by the dialogue – I think that whatever way provides a sense of meaning or helps in some small way to restore a sense of control is good.

I am concerned though about ‘anti-stigma’ campaigns that, with good intentions, equate mental health problems with physical health problems. It is good to bring ‘mental illness’ out of the shadows. It is good to raise awareness of treatment options, though it should be said, it usually ends up with drugs or incarceration. In fact, it always has – there has never been a golden age despite the political opportunists raving about the 90s and how it all went downhill from then.

A diagnosis can be a key – out of the prison cell of suffering if it helps make sense and restores some feeling of control; or can lock the cell and restrict understanding and narrow the lens through which a human being is seen.

I am worried that some anti-stigma campaigns will, unwittingly, medicalise and imprison people as much as free them.

Nearer to reality

One of the other mistakes that can be made is to assert that people in deep emotional or cognitive distress can easily ‘take control’. God, wouldn’t I have loved to! But if you’ve been there, you know it’s not a lack of desire.

Ironically, people in mental distress see through the masks of humanity more clearly than most. Not only have they been in the depths of hell, but they have insight into the permeable layer between ‘normality’ and ‘madness’ – they see clearly how vulnerable we all are. They/we have been closer to emotional and spiritual nakedness than many – it is not pretty, but it is ‘real. They whisper to you – watch out, it could be you…

We see that ‘reality’ is shifting, transitory, and that, ironically we all have to ‘make meaning’ in order to survive – that the human is a meaning making machine. This is another cruel joke. At a time of complete loss of control over mind, thought and feeling, we see the only stark ‘choice’ we all have – to live (and perhaps love, as Auden put it) or die. That is the control we have. It ain’t much, but it is all.

Maybe that’s why people fear to engage. We remind you too much of you. And the sheer endurance needed to live a life. And the void. This is also why people who have been through stuff need to lead mental health organisations and campaigns.

The Lighthouse

Some of the above also explains I think why imposition of meaning – imposition of a diagnosis – can feel so like a sham. Those symptoms that drop into a classification bucket perennially fail to get at ‘what it’s really like’. And if the drugs don’t work either – double whammy – that’s when we realise that even those ‘parents’ have not got it in them to rescue us. That moment in any journey of emotional distress is almost unbearable. Almost.

We have gone beyond what most have witnessed. What most would ever want to know.

In hindsight for me, that is the moment when recovery and healing may start. For a while, the realisation that only you can sort this out – that only you can journey through the storm, broken compass and all, is impossible to bear. It is Cape Horn. Impossibly lonely and terrifying. Almost.

So where are care givers? At that point you need different sorts of relationships, different friends, to help navigate – maybe loved ones (the ones that haven’t abandoned ship), good therapists and friends are lighthouses? The flashing red light is a fleeting but insistent reminder that you ‘can’ make it to the harbour or out-ride the storm. But it is your boat, broken compass and all.

I wish you all the best.

 

If you liked this blog, there are loads of others at http://www.futurepatientblog.com – on mental health, patient and public engagement, healthcare… and poetry.

 

© 2017 David Gilbert

 

 

 

 

 

 

FAQu – some answers that patient partners can use when they get asked the same old questions

Better than FUQu

Yesterday, I was at (another) meeting. I had been asked to talk about ‘patient partners’. Well-meaning healthcare professionals listened to what I had to say. And then came the questions. If you are a patient leader, patient partner, or whatever you’d like to call yourself, know what they are, right?

After thirty years of advocating for people who use services to be fully fledged partners in decision making, they are the same questions time after time.

Then I thought. I’ve written about all of these. Maybe it would be useful to do a sort of ‘FAQ’ response. It saves me from doing a sort of ‘FUQu’ response born of weariness… See, I’m learning to be kind :-)

If these are useful, please go ahead and lean on them when next you’re asked…

So, who do you or these patients represent’? This is a blog on the myth of the ‘lay representative’ and why we should banish the word forever.
https://futurepatientblog.com/2014/12/05/the-rep-trap/

All patients are individual, and their needs personal’. This is another subtle challenge to the ability of any person with a health condition to be at the macro-policy level. However, if patient partners know broadly what matters, then they can use personal insight coupled with a wider understanding of what matters to all, to catalyse conversations. This may help: https://futurepatientblog.com/2015/05/14/the-patients-dozen-what-matters-to-patients-and-carers/

‘What difference do patient partners make’? This is a blog that argues for a different sort of framework to assess the impact of patient partners – it is focused on patient partnerships in improvement work, but could be useful more widely and act as an evaluation framework: https://futurepatientblog.com/2015/03/22/seven-things-that-patients-bring-the-benefits-of-patients-as-partners-for-change/

We are all patients’. This is not a question, but a challenge. This is the most trotted out line by health professionals who, by saying it, are implicitly undermining the need for any patient partners at the table. We are all patients? Well, yes…. And no. https://futurepatientblog.com/2014/11/28/we-are-all-patients-yes-and-no/

What does a Patient Director do?’ This is a more recent question of course. And I am now beginning to be able to address it. Here’s a blog that tries: https://futurepatientblog.com/2017/06/09/happy-birthday-me-musings-of-a-two-year-old-patient-director/

Why do we need to change how we engage with patients?’ The failure of traditional engagement is the underlying rationale for much of what I do and is informed by many years of seeing that the current approach ain’t working.
https://futurepatientblog.com/2015/01/22/the-engagement-industry/

Why do we need patient partners now? Here are some blogs that discuss why patient partners are needed and why only by creating true patient partnerships can often intractable solutions be found:

This one is about why STPs (sustainable transformation plans) require it:
https://futurepatientblog.com/2016/09/16/the-hedgehog-what-happens-when-policy-making-is-driven-by-fear/

This one is about the overall culture of fear. And how patients can help 
https://futurepatientblog.com/2016/02/13/stop-kicking-the-cat-how-patients-can-help-shift-the-rule-bound-culture-of-the-nhs/

And finally…

Here’s one for all my fellow patient leaders who are tired of answering questions like these and in acknowledgement of the emotional labour. Thank you:
https://futurepatientblog.com/2016/09/14/dear-friend-a-letter-to-patient-leaders/

If you borrow from these ideas, it would be nice if you can acknowledge where they came from. Thank you and good luck.

 

There are many more blogs at http://www.futurepatientblog.com – some on patient partnerships, some on mental health and some on poetry.

(c) 2017 David Gilbert

 

 

The Road From Nowhere – How Patient And Carer Partners Are Changing Healthcare

The Third Wave

We are entering the third wave of patient power in healthcare politics. A rights-based user and civic movement focused on accountability in the 70s and 80s gave way to a more institutionalised form of patient engagement. This has focused on ‘feedback’ and ‘representation’ that aimed to improve quality. But it has mostly hit the buffers as people realise it is still predicated on ‘child-parent’ relationships and preserves decision-making power in the hands of the professional elite.

Now, the emergence of ‘patient and community leadership’ is all about what we bring – our assets – as people individually and collectively. This has given rise to myriad forms of engagement – ‘patient entrepreneurs’ inventing apps and developing innovative kit, digital whizz kids utilising online fora to harness collective voices, community and health champions bringing in the marginalised, peer support workers delivering a different sort of care and patients/carers influencing healthcare design, research, education and training.

In my world of health care commissioning and provision, the old rules of engagement are breaking down. People affected by life changing illness, injury or disability or living with long term conditions want to be trusted equal partners in their own care, and perhaps more significantly in co-designing and co-delivering services.

We can help reframe problems, bring our insight to bear so as to develop new solutions, shift policy and practice, change dynamics and model a new form of collaborative leadership. This will help accountability, transparency, quality and safety. But only if we are valued.

Something special going on in Sussex…

The Sussex MSK Partnership has recognised this shifting ground and appointed a Patient Director in each of its regions (Central, covering Brighton and Hove, Mid Sussex and Horsham and Crawley; East covering Eastbourne and the surrounding area).

My role as Patient Director in Central is to help us focus on what matters to the people we serve, and hard wire patient partnerships into improvement and governance work. This includes using data for improvement and effective patient and public engagement.

One way is by developing a growing band of Patient and Carer Partners (PCPs) – eight people so far who I met through recommendations from clinicians. They weren’t recruited via an inclusive and systematic process. I went with the energy. These fab people were ripe for working in partnership and we wanted to get on with it.

They are not representatives – they are collaborative leaders and partners whose role it is to be critical friends and insightful supporters who draw on their wisdom – born of living with pain and suffering, loss of identity, loneliness and vulnerability, resilience and passion alongside their experiences of healthcare and of life and their vision of patient-centred care. Their experience is equal to, and different from system insiders.

What we’ve been up to

So far, they have been working mostly on improvement projects. They have been part of improving administrative processes, how we deliver services for people in pain and how we work in fibromyalgia. PCPs have been involved in corporate work on values, quality summits as we prepare for CQC inspections, staff events (running workshops, and contributing to its overall design) and away days for staff.

Each of our six CQUIN projects over the last two years has been co-designed and co-delivered with PCPs. These are development projects that have focused on shared decision making; pain redesign; developing patient-centred outcomes; integration of physical and mental health services; supporting admin staff; self-referral in physiotherapy.

They are not there to ‘tell their stories’ merely to provide a compassion rush for professionals. They stay in the room for difficult conversations, warts n’all – this takes courage on both ‘sides’ to be open and vulnerable, for staff to ‘hang out their dirty linen in public’ – and deep trust.

Partners view care from different angles. One changed our appointment process by challenging how we fixed (inconvenient) appointments that led to floods of cancellations. “You really want to put us in control? Let us call you to make an appointment that suits our life.” So, we did. Our admin staff like it. And we will save about 3,400 cancellations when we roll out the new process.

It ain’t perfect

Things move so fast, partners complain when we haven’t kept them up to date. We have not always had the early conversations to get clear on how much time they have to do stuff. We’ve sometimes failed to pay people on time. Project leaders can need prompting that having a partner is not the only thing they have to do for good engagement. How much is my job, how much the project leader’s, to provide ongoing support? How do we support staff to work with partners?

Being a partner in improvement work is different to governance roles. One person sits on our corporate clinical quality group and is doing a great job. For others it may be a stretch. This is mainly because the audience is different and may be made up of people outside our organisation who we haven’t buttered up yet! We are going more slowly – me and the clinical leads for physiotherapy, spinal and pain MDTs will bring in partners with the right support. The task is partly how to maintain confidence and ask ‘scrutiny’ type questions, so as to bring the conversations back to what matters.

Learning about relationships

Clinicians and PCPs have discussed our learning. One clinician noted power imbalances from the off. “I gave a potted CV as my intro. The partner disclosed so much and made herself vulnerable”. This mirrors most clinical conversations. It is no wonder healthcare engagement can be triggering for someone who has had particular experiences of care.

Vulnerability is common to professionals too: “Maybe patients believe I have power to change the system. I wish!”. To which a PCP replied: “That level of honesty restores my confidence in how I can work with you”. It takes courage, time and trusting relationships to have this sort of dialogue. be vulnerable and human. One thing I have learned is not to rush into developing protocols and systems for engagement. It’s about the human element.

And yet the NHS is all rush. Regulatory and delivery pressures mean real conversations (I don’t mean meetings!) are a rarity. Let alone when, to some staff, it is unclear what value partners bring.

However, as managers, admin staff and clinicians see the benefits of people in the room, they are coming to me and asking for patient partners to work with. An email in my inbox is a request from a clinic centre manager for a partner to shadow the reception team in order to provide insight as to how we can improve the environment, access and contact with patients. This has come off the back of one of the CQUIN projects where ‘keeping people informed of waits’ is a priority for improvement.

My problem now is managing demand! I don’t want to become a PCP ‘pimp’ – “get me someone by Monday, David”. This all needs careful prep. It requires resources too! We offer the NHSE recommended £150/day plus expenses. I am a firm believer in valuing people for their time and expertise. But my budget is limited. I want programme leads to match fund and include engagement as a budget line.

Things are changing

The group is getting to know each other better – we get to be colleagues and friends. And people’s gifts and talents rise to the surface. One sees her ‘frozen assets’ thawing. She wants to do more in her special field of training and education and is leading work on how we capture learning and raise awareness of partners’ skills. Another, with corporate PA background has written a welcome pack that has helped us with a common understanding of roles. This will be crucial for the next round of recruitment. Insights from the caves of suffering is being combined with professional talent and life skills – the person within the patient emerges.

Some have wanted to move on. This work may suit them for a while. Or they may get ill again. This work can be tough on many levels. We have to look after each other. The group want to meet monthly to consolidate and re-energise. Our passion and idealism can lead to great things, but we are human and frail. It can be flattering to be valued again. But we need to value ourselves too – rest rest rest.

Yes, we need to recruit others. But we only know about the role because we have spent time getting there. We also need to do more to widen the base for one-off involvement (focus groups, events, workshops, etc). We have 200 people who say they want to be involved in our work. One of the PCPs is going to oversee the process by which we do that.

The group has grown feistier (though they were always feisty. That was one quality I was looking for). No longer will they accept being slotted into institutionally defined opportunities. Yes, they think we should move closer to influential places of power (MDTs, etc) but they want to embark on their own projects and work collectively. We might launch a piece of work on co-ordinated care. My job then is to make sure that is linked to decision making.

The wonderful Mark Canon, who works within HERE (http://www.hereweare.org.uk/about-us/our-story/) will help us explore how systems thinking can aid our planning. One exciting possibility is that partners could become mentors and catalysts for systems thinking and collaborative leadership. The group is changing its spots.

My role then changes too. Instead of whipping up enthusiasm internally and getting professionals to come up with things that PCPs can do, it’s becoming the other way round – bringing innovative ideas into the organisation. I need soon to get out of the way as better relationships between people flower. And you know that letting go is one of the things I’m good at, don’t you? Not. So, I am learning all about my controlling foibles.

The Patient Director journey

Our journey as a PCP gang has mirrored my getting to where I am as Patient Director. This was was the first role of its kind, and it’s no secret I have struggled (two breakdowns after not having been ill for 18 years). I was an outsider and had never been a director.

Within a frenzied NHS culture, holding the space and time for this work is the most important, but most challenging part of my job. But I believe we are only where we are because we have taken it slowly, and spent time building trust. We are pragmatic, idealistic and opportunistic. I go with the energy.

In my wider work, I notice many NHS folk who start this sort of gathering of people by defaulting to bureaucratic procedures – form before function (skills audits, database development, recruitment processes, policy documents). I am reminded of a friend who, when asked for his preferred ‘leadership model’ replied: ‘I get a gang together, we decide what to do, then do it’.

Supporting staff is a huge issue though. We do need to develop guidance (horrible word) for how staff work with patient partners. And develop an induction module for new staff around patient and public engagement more broadly, as well as how to work with patient partners (this needs to be co-designed and co-delivered).

At a leadership level, it is heartening that I am not the only one to challenge assumptions. We were discussing an issue where people were making assumptions about how people should be communicating with patients. I was about to say something, when a colleague chipped in: ‘Why don’t we find out from patients’. I relaxed. My job was done. It’s that sort of mindset we need to further cultivate. But the soil is fertile.

The organisational culture is founded on values such as passion and innovation (see HERE website). But that very fluidity and fast changing culture I sometimes find dizzying. There is a balance between needing solid organisational structures, transformation demands and delivery.

And what of the benefits? Some partners report improvements in their own health and confidence – personal and professional. One clinician said: “recommending a patient to be a partner is the best treatment I’ve ever given”.

Staff value the impact of partners and practices and policies (slowly) change – new appointment letters, new questions on surveys, more widespread patient outcome measures, shifts in models for pain services and education programmes, patients on recruitment panels, more honest conversations about change, etc.

Meanwhile at national level

And here the tone changes: NHS policy at a national level is still in the dinosaur age. Despite the rhetoric, Simon Stephens seems (IMO as they say!) incapable of building on his five year forward vision that saw communities as leading the way – there has been little engagement in STPs, for example.

Despite my blog ‘what’s stopping you appointing a patient director?’ gaining more than 2,000 reads (https://futurepatientblog.com/2017/03/23/whats-stopping-you-appointing-a-patient-director-an-open-letter-to-all-healthcare-organisations/) few organisations are interested. Or am I too impatient?

It is frustrating – and reminds me I am ‘just’ a patient after all – when a chief exec of an Eastern England Trust does not reply to a message on twitter asking him why he feels that ‘patient leadership’ is unnecessary (you know who you are).

However, it’s wonderful that a service user/carer leader has been a appointed in Sussex Partnership FT. And to hear that another Patient Director post may be advertised in an acute trust.

We go on banging the drum. But this work is tiring and can be lonely. That’s why we need gangs like mine locally.

That’s why we need a national network for people like us. That’s why a few of us have teamed up with NHS Improvement that has very generously pump-primed the development of the ‘Snow Community’ (named after the inspirational Rosamund Snow) which will take these ideas forward at a national level. It will be about support and belonging, capacity building and promoting partnerships in improvement. Watch this space!

Why do this work?

Someone asked me recently why I do this work. It’s because I remember crying alone on a psychiatric ward while under 24/7 suicide watch clutching an old teddy bear. And it is also because of the kindness shown by staff (admin and clinical) and fellow patients that showed me true partnership is possible. It is the resilience and tenacity I have showed despite myself.

But mainly, it is driven by my admiration (and even love in many cases!) for fellow travellers on the road from nowhere – Alison Cameron, Anya De Iongh, Karen Maskell, Rosamund Snow, Mark Doughty, David Festenstein, Denise Stephens, Ceinwen Giles, Trevor Fernandes, Lynne Craven, Dominic Stenning, Dominic Makuvachuma-Walker, Brenda Murray, Michael Seres and many others. People who are changing healthcare forever.

It is all about knowing that we bring jewels from the caves of suffering. https://futurepatientblog.com/2017/01/27/the-jewel-merchants-a-parable-for-healthcare/

It is about seeing the slow, strong, steady rise of the third wave of a patient movement – one founded on the wisdom and insights of those affected by health conditions. It is about friends – many of whom I have not met yet – who share the passion and commitment to help improve healthcare. It is about hope. Join us?

 

If you liked this blog, please do read others at http://www.futurepatientblog.com

© 2017 David Gilbert