Valuing What We Bring – an open letter to NHS England

 

Last week, our book The Patient Revolution – how we can heal healthcare’ was launched at an event at NESTA. There were 160 people there – patient leaders, clinicians, policy makers, and loved ones. The event was live-streamed and stimulated much debate on social media.

The book charts the stories of Patient Leaders – those who have been through stuff, who know stuff, who want to change stuff.

One abiding theme throughout the book is about how local and national NHS organisations systematically undervalue the ‘jewels of wisdom and insight we bring from the caves of suffering’. The book is receiving good reviews. I expect there to be transformation bla bla

Now, back to earth with a bump.

Yesterday, I received an email from The Head of Something at NHS England. It stated: “We would be keen to understand more about the approach you have taken in Sussex to involving patients and the public in patient safety to inform our work and, if you are interested, explore how you could be usefully involved in the development of this work”.

Finally, I thought! Then I carried on reading:

“In accordance with NHSE/I PPV expenses policy we would be able to offer reimbursement of any travel expenses and, depending on the nature of your involvement, a potential payment of £150 a day or pro rata – we are not, however, in a position to pay consultant fees”.

I decided to consult with others as to how to respond. This was as much to stimulate dialogue on a contentious issue as to inform my views.

After a lively twitter discussion on issues concerning payment and, after consulting with all the contributors in the book – five of whom got back to me within minutes expressing strong views – I penned the following.

I hope it further stimulates thinking about how the system better values our contributions. La lucha continua.

___

Dear J

Thank you for your email. On reflection, I am going to say no. I would like you to pass this email on to S please. My thinking goes something like this. I have worked for 35 years in and with the NHS, often for free. I am 57 years old, my wife does not earn, I have two kids and no pension.

A freelance consultant calculates his (in my case) wage by assuming that he earns a daily rate 150 days per year, the rest of the time is spent trying to find work. Out of that salary must come tax, work equipment, NI, pension constitutions, etc.

Thus, £150 per day, values my time as equivalent to a salary of 150 days x £150 = £22,500. Gross (pun unintended).

You are asking me to provide strategic advice, based on my own thinking over the last four years at Sussex, plus the entirety of a career spent devoted to furthering patient leadership and effective engagement.

You are asking me to provide consultancy advice. I am not here a patient providing feedback on his experience of using services. Nor am I being asked to participate in a workshop or such like. You are asking me for a large part of the contents of a brain that has worked overtime for many years on these issues.

I appreciate that NHSE developed a payment policy. But it is now becoming a millstone around patients’ necks. It was intended as a way of lifting us off the floor via recognition, but it has turned into a ceiling that we bang our heads against.

Given also that Directors in your organisation earn about £150k per year, I am being valued effectively at 15% of that value.

I am sorry, but if an organisation such as yours, with the resources you have at your disposal, is not able to be flexible, then I feel additionally aggrieved.

I have spent a long time supporting patients, users and carers to be valued properly, and I have to practice what I preach. While I am sure I could help you, I do not feel sufficiently valued by your offer to be able to take you up on your offer.

If you want to know a bit more, maybe you’d like to buy the book?

None of this of course should be taken personally, or be seen as coming from someone who is a money-grabber. I do a lot of work for free, mainly for people with whom I have a trusting relationship or for organisations who cannot afford a fee. I am afraid that at the moment NHSE does not qualify as either of the above in my mind.

I wish you good luck with the work, and if you were to reconsider your guidelines then I would be happy to chat (NB. Most guidelines, as NHSE knows, are there to be implemented with flexibility).

Kind regards

David

Postscript: This morning I received the following response.

Dear David

Thanks for letting me know your position and I’ve forwarded your email to S as requested.

Best wishes

__

 

 

(c) 2019 David Gilbert

If you liked this blog post, you can read many more at http://www.futurepatientblog.com

If It Helps – why I need to write a book about the psychiatric system

The illness-laden dreams were back last night. I was sunk in a depressive stupor and telling my father he was a c&<t and that I wished he was going through it. I woke. The ceiling was dark, the birds had not started to sing. I had been back on the ward.

This new book I want to write is not a good idea. Why open the scars that have mostly healed? How ridiculous it is to be setting out to write another book, this time one that delves into my nightmares and what happened to me when I was ill. Why should I explore again and try to find out whether things are any better now?

My new book is just out – one that celebrates the rise of patient leadership. I should be celebrating and taking it all in. This new idea for a book is not a good one.

This morning, social media is awash with tales of racism, polarisation, volatility. Amidst the hubbub, voices rise about mental health and mental ill-health – arguments break out about the lexicon. More and more the public discourse on mental health rises like a tide. Surely this is a good thing.

A new app that supports people to maintain wellness is launched, whilst others wonder whether we have over-troubled our children by making them more aware of emotional distress. It feels like a lot of people who know little about suffering but have ‘ologies’ are fishing for likes with clever euphemisms.

And yet, I don’t hear the voices of the silenced. I don’t hear the narratives about what it is like if you have mental health problems at the further end of the spectrum, where you do need help, but are ambivalent about what is on offer, or can’t get it. To be trapped in a nether world of being too ill for an app, but not knowing much about the zone you are entering – whether you will ever return from the caves of suffering.

There is a lot of noise about mental health. But not much music. Serious music.

What about the underbelly, what about when you need help for significant and enduring distress, when you are bounced between pillar and post, between a GP recommending CBT and the desperation you feel at night, when you don’t know who will catch you if you fall, when the terror of your mind is inescapable. When nothing is on offer and the guilt and shame you feel for not being ‘helpable’ rises to a scream?

And what if you enter a psychiatric hospital – a dark world of containment and fear, the far territories of the mad, what happens in a world when no-one is looking and nobody gets ‘likes’ and there are no followers? What drugs might you be put on? What labels jammed down your throat. Is this incarceration or the journey towards breakthrough?

And then again, what of the cost of writing like this? To dig. To pick at the pock-marks of my arms, the scabs that grew over my injuries. To think of days on the grass bank by the psych unit amongst the litter of cigarette butts by the sodden benches overlooking the cemetery.

Surely someone else can do it. There are plenty of books out there, and good writers. I have healed, I am loved, reasonably successful finally. I need to rest and ‘self-care’

And then a short phrase comes to me: ‘if it helps’. If it helps one person to better understand the world of the psychiatric system. If it helps one person navigate a little the monstrosities of their mind, or how to deal with healthcare practice, if it promotes one discussion between people who work in services and those who use them, if it promotes one sentence in a policy that seeks to change practice…. Then it must be done.

Sod the nightmares. I’ve been through worse. And so have millions of others. I need to write.

8.10.19

All Inclusive – Seven poems about power, love and history

I have been in hospital (it’s been rough) and am now in Croatia – a scarred country. I have just read Sebastian Barry’s ‘Days Without End’, a book about the American Civil War and the best novel I have read for a long time. Being outside the troubled UK for a while has added to my thinking about the nature of personal and political strength and power, love/hate and history.

Some of these poems reflect a resultant shift in my writing I think. I hope.

p.s. I added a short eighth poem to the mix – one that feels more personal. Perhaps it is an epitaph on struggle.

The Terrace

Do not say so much. The bells of the old town
ring out over darkening water – we count
at least seventeen tolls. Each distant boat
is stilled with one dim light. All day the breeze
has shifted contrary to the earth. My mind

still rests with what we sang. We have always
moved towards each other like an inroad.
This evening’s urgent stars will stay our downfall.
We sit on the terrace taking our time – time
having taken us. Do not say so much. If we

are not for yet more knowing, then what now?
Catchments, keeps and walls. Tomorrow early
we will walk the wreckage of that citadel
where we died and lived and were raised
then take what was lost (do not say so much).

Song For a Friend

Our fears are real. They assemble
like grass. There is no guarantor
of love. None of us are ready

or will hold out. The flowers
are in flame. But here
you are held in the habit of dark.

And if this room were a chapel
a child would be with her mother
crying. The landscape is buried

beneath overlapping voices.
A man has cut back the lavender
and left drying clumps on the path.

The scent rises to our window
and I will not let you leave so easily
this sweated earth and scurry.

He tears and cracks the twisted vine
then piles the branches onto the bonfire.
We will wait until he lights it.

A Father’s Prayer in Four Parts

I.

I was with the quiet boy. The breeze took us.
Like it came out of nowhere. A swell
in the close hot air. A stray
wisp of pressure yielding. We had been

bent by heat so long
unmoved for hours. Then

it rose again. Tentative. Solemn.
Our heads bowed. As if the land had tired
of its lull. A breeze like a kiss
on that first cheek. Flesh we cannot hold. Foretelling
a flicker that will rightly disappear. Or a gale.

II.

Out where the boat’s wash meets the ebb
that whorl was all of us confused.

A sparrow landed on the chair
mouth gaping, shocked out from a smote sky
as if we could provide. No bird
now can muster a song

the wind again fallen to silence
like a sheer path between us.

I said: We all borrow from the breeze
by and by. You can be in all the right places
and never catch it. But

all I was thinking is for him to talk.
I just don’t know how to say anything right.
Please. What has been pledged
might be fulfilled. Let there be
a cold wall of opposition to the silent rule.

III.

I say this as a final breath
like something important, as if what we write
is worth more than the page it is written on.

The earth though bruises easily with hope.

Like when a knot untangles
or white lie at last found out, the breeze
this time, I don’t know when

became a wind became a gale. It was
a change, that’s all. Down here we slip
alongside the weather

and whatever comes our way.
Back then I’d bale heat from the sun
cup rain when it deigns to drop.

IV.

We are available. We are all of us
fathers of quiet boys

who must ride the swell as soon as stare it down.
The wind was up, an exuberant host

a mighty gesture of will, a prayer of old
returned, a memory too raw. Desire

footloose clambering towards a zeroing
in a rush as if saying sorry I did not know.

We fill out with the baying and barrelling storm
and then he appears face wet, this

boy all of a sudden lithe dark
dispossessed no longer mine not that he

ever was and talking talking.

The History Lesson
For Ronald Caffrey

I had a friend who raised his hand
at the re-beginning of term. Desperate
measures. Politics is power to young

Miss Dabrowska who hated me
and the way we sidled in to class as if
happy and bagsied leadership.

There was a blind pressure rising.
She was stunned by his answer, forgave
temporarily the exchange of porn across

the back row, gobbing in corridors, unfocused
insolence and our leaving of upturned
drawing pins on chairs as we left the hell

of her class for double physics. Echo it
softly in the boy’s changing rooms
during inevitable September when throats

are gripped. We should never have lazed
our way through summer for the fire was
not quite out. Power is what sleeps by dawn

as if for aeons, then slips like a whip thin
snake under levels of dust and rock
biding the eyeless time.

All Inclusive – The Road to Kupari

The sun has not yet tumbled over the hills,
rocks pull themselves clear of the water, the sea is quiet.
I ask a woman with a dachshund. She leads me

to the left. Then later you must turn right.
Says she lives in a local villa six months a year.
She is upright and must be over 70

clearly loves it here. I come first to the shell
of a villa. Clear headed thistles. An almost ordinary
village square. Naked palm. Burnt tree

split as if by no-blame lightening. How live
with such ghosts? Or just tell it like they are
men with guns and work to do

pulling out and on to somewhere else called home.
I take a curved high path then when it stops
realise it was a wall all along

and wonder whether anything is worthwhile.
Yet red berries grow amongst the burnt back bracken
and pinecones hang out over

where soldiers danced by the dead village’s dead.
I crouch then lie in an old gunner’s position
to get low and picture fallen flower heads on the path

against those hills, as if I am trying to say something.
Down below: The square is empty, withholding what to say.
On a stone, a witty lover has written: Your heart

will tell you where you need to go so listen to it always.
A couple lean on a silver Mazda convertible
and pose for a selfie. But what if

it doesn’t? Your heart, I mean. Sullen groves.
I am closer now. A Croatian crest ten meters high
on the sea wall overlooks the rhythmic coast –

a shimmering light – like war is no reason to stop
daubing the waters. And way up on the sixth floor
someone has leaned over the grey pocked balcony:

All Inclusive in bold white paint. And down here
the old public toilets, and one of them dragged –
it would take a strong man to do that – to lie

on its side by the locked gate. Then ascend
the grand ruined steps. Almost break your ankle
entering the mammoth carcass

of the lost hotel, stretched
under the risen sun, utterly scavenged
bone and cement. We must identify. Say it

out loud: The lobby.
The reception desk. The stairs. Black-bellied
crevice beneath a sagging ceiling, dry-blooded

vast entrances and exits of air, bowing forever
numb-hearted, tumbling inward
over hallways upon hallways, war upon war

archways stitched with vine, shifting light needling
the innards – a sun’s sullen attempt to heal.
Step in, out and in over rubble, twisted wire, broken tiles

piles of cans, condoms, dainty pink flowers
and sofa buckled by seasonal rain and heat of memory.
And by the lift shaft, a penis and swastika side by side.

I walk back past The Sheraton – a stone’s throw away.
I send a text to Adam: ‘meet me for breakfast at ten.’
Try to take in the boats. The swimmers. And yes sparrows.


As It Will
For John Wilson

My Integrated Science teacher told me that everything damnable in this world can be reduced or expanded into whatever we say it is and that a curious mind is the only religion worthy of a fight and colour of flags means not much more than a line on a map and fear up close and blended en masse. How interminably slow – how echoingly, longingly, laughing slow – the species can be when memory is lost. That we are all blood versus blood until it roils into a mixture again and the meek come clean and speak pretty words. How the body inside likewise can be its own killing machine or gentle healer if you like, blood in vessel states, mere corpuscle and cells like you would not believe – with so much iron and some of them for hunting down and tackling the invasive. He laughed and said ‘you could call it love’. I didn’t then but I would now. And how the rest of us are all boundaries and tides washing in washed out, the heart an old ticker and weeds are plants by any other name. It is just the way we look that matters. And shouldn’t matter so much. Now I think of him as we begin to be at it again. That when the blood flows down – as it will – into the hollowing scooped moistening earth, permeability, diffusion, osmosis is at work. Or seeds, willing and head bowed to the cause. No more should we be afraid at the end than we were when born. And how like a friend he was when he said all that, my only giant. He knew the abyss was calling me down. He wanted me with nothing to worry about. I know it now, him chalk-fingered, willing the atom to be a universe.

Withheld

I remember nothing of our tour of The Gardens
except for the pond, now a slump in the lawn,
where the trusty gardener’s son was drowned.

All else seems unworthy of excavation
though the guide talked for hours of war,
canals that drew in the city’s drinking water

and imported seeds that still throw up exotica.
It hardly matters what we remember. We paid
an entry fee, more for ice cream and holding hands.

But since then I have been withheld,
a dreamless archipelago. I am found
moored by inlets. Like something tightened.

Like my foot was in a trap. Thoughts unsafe.
Wrapped and coiled against haphazard truths.
I was thinking of other men. Some cast off

the braided rope. Free themselves from stone.
Others give nothing of whatever they will have.
For me, every beautiful place is a reminder

of less beautiful ones in their keep. Here,
a clump of cables jut from the wall and droop
like an injured hand over the ravaged courtyard.

Different elements are recovering at different rates.
The rebuilt houses on the escarpments look down
on fishing boats spearing across another dawn.

And in a quiet zone of former trouble
may we be well enough to say out loud:
How you lean in to me. How this small soul is ours.

I Came Out At Night

I came out at night
to find a rock

where no light shines
to look out

for shooting stars
my body to be filled by waves

a few lines left as bones
a reason to go on

I wanted
so much

I could not at first
make out the new moon

All poems © 2019 David Gilbert

David’s pamphlet ‘Elephants Fragile’ is available from Cinnamon Press and ‘Liberian Pygmy Hippopotamus’ is available from Templar Press

‘ReCollections – a celebration of 70 years of the NHS’ (with visual artist, Beth Hopkins) is available from The Bethlem Gallery, where David is Writer in Residence.

His full collection ‘The Rare Bird Recovery Protocol’ will be published by Cinnamon in 2020.

You can find other examples of his poetry at http://www.futurepatientblog.com where he also writes on mental health and healthcare.

Join The Docs – A patient perspective on integration

The doctors were kind to me. They did the right tests, I assume. They explained things as best they could. They told me what would happen. And they seemed to provide effective treatment.

The phlebotomists, healthcare assistants and nurses were great. I saw moments of love and courage on the ward that will stay with me (amongst patients and carers too, of course).

The ward environment was hard to take – the smells, light and noise in particular. The lack of privacy found me at one stage unwittingly eavesdropping on conversations I had no right (or inclination) to hear – the breaking of awful news, the ‘mobilisation’ of a man in agonising pain, the indignities of humans in naff pyjamas almost making the toilet.

All this is common place. All the surveys in the world show this sort of stuff.

But here is where the light does not shine.

1.

On my first day of admission to hospital, I had a CT scan. It showed something “weird” and they said they would provide ‘conservative management’ (with a small ‘c’ thank god). It was either a ‘diverticular abscess’ or “something more serious”. It was not a great moment in my life. They put me on enough fluids to flood a city and took my temperature down with intravenous antibiotics. I asked them what food I should eat. They said ‘soft’. That was the extent of the dietary advice I had while in hospital. My menu options were chick pea curry, chilli con carne or white fish. I went to Costa and had yoghurts most nights. For all I know, I could have been making my condition worse.

2.

I got used to assuming that I had the gut abscess and seeing my temperature decrease and my energy return a little. On the third morning a different consultant on the ward round hesitated at the computer screen on his wheeled trolley and scanned the scan. From the way he was looking, I assumed it must have been the first time he had seen it. He felt my belly and announced that I might need a ‘biopsy’. I have no idea whether he read my notes. I was back to black. All week (and a bit still) I yo-yo’d between optimism and catastrophising.

3.

Meanwhile, back on the ward: In the next bed, was a young Albanian man who had broken his ankles while jumping off a falling ladder. He spoke no English. During the morning ward handover, while the nurses were otherwise occupied, an anaesthetist strode into the ward. He paused at the lad’s bed and spoke LOUDLY and s-l-o-o-o-w-l-y to him: “You have to have an operation now. Please sign this form”. The lead nurse appeared and pulled him angrily from the ward. He came back later, and with the help of google translate, ‘consented’ (is this now a word?) him to surgery. He seemed in a rush. The clinic was ready, and things had to happen now.

4.

After I got out of the hospital I went for a second scan. This was to see whether the ‘mass’ had reduced and to see if it was an abscess or a tumour (or again try to). The results were due on Friday 9th August. I rang on Tuesday 13th. The secretary said the consultant was on holiday. She apologised and said she would “write an email to the managers” and find another doctor who could do the report. I told her that I needed results before I re-booked a holiday and tackled the insurance company for cover. I rang again last Friday and was told today another doctor would be in touch by the end of this week. I will be away – damn it, I thought, I am going anyway – when the original doc gets back.

Join The Dots

Or join the docs.

The examples above are simple. And not easy to solve I guess. It’s about ‘joining the docs’ – to each other, to nurses, to wards, to interpreters, to dieticians, to medical secretaries. And making sure that the information goes along those dotted lines to make them complete lines of communication. Both ways. And with patients and carers.

My issue is co-ordination. Consistency. Call it ‘integration’ if you want (though the posh wonks and policy big boys have pinched that one for their highfalutin strategic plans that will not solve much IMO). Maybe we could get these simple things right before we try to be too grandiose.

Of course it is not just docs. What about the gaps between health and social care; one ward and another; one hospital and another; commissioner and provider, etc?

One theme that runs throughout my forthcoming book ‘The Patient Revolution’, in terms of the gripes patients have, is co-ordination and consistency.

In the book, we argue that these sorts of issues will only be rectified when patients have true power as equal partners in decision-making. We have skin in the game – nobody else in a healthcare organisation has the real nous and keen focus on the ‘gaps’ in care to do it. We could ‘bang heads together’, or in less confrontational language could help be the glue. After all, we all want to be ‘patient-centred’ don’t we? Shouldn’t that be the vision for any partnership?

Without patients in the room – and, more importantly with a seat at the leadership tables – pathways may be redesigned, but they will remain disjointed, cracked and crooked.

Isn’t it time we all joined together in order to join it all together?

—-

‘The Patient Revolution – how we can heal the healthcare system’ by David Gilbert is published by Jessica Kingsley Publishers. It is available on the 19th September and is available for pre-order now. https://www.amazon.co.uk/Patient-Revolution-Heal-Healthcare-System/dp/1785925385
© 2019 David Gilbert

I Think I Have Been Told Good News – a hospital poetry diary

 

After two weeks of bad gut problems, I was taken into hospital. This is my diary.

Way Off A Blackbird (my first day)

I have become a patient with
a wristband with
a barcode.

They won’t lose me now.
I sit by
the Major Incident Cupboard.

It is a slow Monday in A&E.
Everyone calls me darling.
I am guided by temporary paracetamol

Middle aged men sit down gingerly.
A woman in a wheelchair
blonde roots perilously exposed

leans into her partner’s mid-riff
as he texts, gasping ferociously
as if giving birth
or worse

__

The very observer shakes.
I am an eye on trembling

How can one heart live
with speculation,

wildness of unknowing?

It would seem a pity to die now
of “something nasty”

when I see up close
different coloured poppies

deep azures and marine blues
of my bed’s wraparound curtains

__

On my first night in
two old men

bellicose with opinions fire off at their wives
and when they are gone

lie back exhausted
as if punctured.

He that has any heart left hears
way off a blackbird

__

He disassociates from wanting to improve the world
deletes emails calling on him to sign online petitions.

He tries to remove all suggestion of concern
then sniffs and shifts minutely.

He is now a small long eared marsupial
edging around and pissing a little

in each corner of his new cage

__

“Have your bowels opened?”
A chorus of concern
into the emerging dawn

A small army descend
dutiful reductionists
clothed within their measurements

__

I am low blood pressure
I am an easing temperature
I am a wrist band
bar-coded and signalled
back to the machine

I read the Poetry of Birds
wear non-slip bright red hospital socks
against what might be happening

but cannot eat
what they dub porridge

__

The smart casual docs
one still scarred slightly with acne
the other scratching his arm

pursue the grand master
with the curlicue perfectly symmetrical
moustache

mastered at many a mirror
soft donning the flesh of a patient’s
limp calloused hand

we are ceremoniously belittled

“discharge time?” he pauses,
the pressure on him now
“all depends on pharmacy”

Turns: “Copy and paste the pathology results
into the care plan”

leads the retreat.
The young docs hastily wheeling away
their portable PC machines.

__

On a high screen that no-one dares turn off
somebody – is it Martin Lewis? – is going apeshit
about online advertising scams.

Pigeons resort to a corner of the roof.
The clouds maintain
a semblance of weather.

It isn’t Martin Lewis.

__

Small lies are being told about me
tenderly emails do the rounds
‘investigations’ ‘procedures’
I am between the lines.

Always better to be double-edged
than truth telling

I cannot yet bear sympathy
am not ready to rehearse
how to protect myself
from the fine words of others

__

I have lived the fluid challenge
IV uplifts
all night interruptions
rustle and curtain flap
beeps from the monitoring machine

small dazzling flashlight
‘Are you up?’ when
of course I would be now.

Small crossings between each change of bag
to pee crystalline waters
pure as Evian.

This morning my hands are puffed up
like those of an inflated boy
but still my blood pressure
lies too low

———————————————————-

Now would be 

the time to arrive
car park emptying
the rustling of leaves
rising softly to fill the dome of evening.

The soundtrack of pain
has served this embattled concourse
with demonic duets

between the arcing strings of the sick
and those who can do nothing
but trumpet love.

And now the last bedraggled visitors slip out
no more at ease but
having done what they can do

before listening for trees before
searching for keys.
The tired skies pale.

————————————————————-

I Think I Have Been Told Good News

I think that I have been told good news.
That whatever it is hasn’t spread.
Therefore that whatever it is

may not be what it might have been.
Though nothing can be ruled out (still).
I think I am less thrilled than I should be.

The grass bank next to the ambulance bay
is covered with clover, flying ants,
stumbling bees and trembling daisies.

The ambulance crew wait on a long bench.
There may not be such news as certainty.
I get up again and am covered in ants.

______________________________________________

Goat

The man with the look of a bearded goat
is matter of fact: “Don’t ring after ten o’clock.
They turn off the lights. You can try tomorrow
but I will be walking about a bit
and the phone is almost out of charge. OK
we’ll have to wait and see what the next step is.
Yes, I know. Then let’s take it from there”.

This afternoon, the doctors had proclaimed
from behind the inescapable curtains:
“The biopsy came back but it is not
the sort of news we were hoping for…”
His wife, in mid-crumple, talked of fight
good honest genes and sense of humour.
Not that he looks like a bearded goat.

___________________________________________

The Bay

The word itself forms a critical juncture.
So tonight he departs that hospital bay

sails to Kirribilli Wharf
and spends all morning at The Celsius Café

breakfasting on chia, coconut and papaya,
staring out over lime green waters

and the old green Harbour City Ferry
setting out with its one lazed black-backed gull

slip-streaming, echoing its wide taken turns:
North Sydney, Neutral Bay, Kurraba Point.

Then he steps out on the next or one after that,
breeze on his glistening forehead. Nothing in it.

The swans and yachts bobbing on silver trails
then his boat wheeling back to Kirribilli again

for one more cappuccino or maybe lunch
or perhaps one more trip around this bay.

______________________________________________

Common Birds

My own form is slowly coming through
like a distant plane, vague and intermittent
within cloud – flesh pink and steel,
the full sound of jets revealed
rolling soft as it breaks out into blues.

But still there is need for readjustment.
Until now, I have been duty-bound to hold
myself in weathered defiance
unable to live with what I sensed
happening or what might. Or was meant

by yesterday, when a pigeon tried to land
on a spiked fence. Now, I hear its cousin
cooing, know that both have come to rest
knowing too that it is time to trust
in common birds finding their ground.

_________________________________________

All poems © 2019 David Gilbert

David’s first full length collection ‘The Rare Bird Recovery Protocol’ will be published in 2020 by Cinnamon Press.

You can find other blogs, on healthcare, patient and public engagement, mental health and poetry, at http://www.futurepatientblog.com

The Patient Revolution – why I wrote the book

I was asked to write a few hundred words for the publishers about why I wrote the book. This came in a summery and summary gush….

Because I am so weary of service users, patients, carers and citizens being powerless. Because I live alongside, work with and love the diamond-studded folk that surround me. I see kindness, passion, wisdom and insight in those they call ‘broken’.

And I have seen our efforts and energies wasted time and time again – I have cried in toilets with bitterness, and know many others who have too. I have spent hours on the phone with people who have been ‘served up’ to focus groups, committees and events, in order either to be patronised, marginalised or insulted.

I know dozens of friends who have to take days off because they relapse after turning up to events, seminars and whatever and having to doff the cap and who are repeatedly stripped of their right to be equals.

For me, the people I want to celebrate are those without the privileged entitlement of current leaders. I dislike the way the NHS sustains the status quo on many many levels – often insidious or almost invisible. Through its structures, polices, and the very language and discourse it depends upon.

But these people we celebrate in the book are the type of people who deserve to be leading the system. However, they lack the support, the opportunities, and are seldom afforded the value they deserve.

My writing is a fortunate gift. So, it feels natural to use words to try to light the way.

This book has been brewing ever since I found myself in a locked psych ward alongside damaged inmates. Alongside Lesley-Anne, paralysed from the neck down after jumping off a balcony because her dad died, who got me to play the guitar for her one evening. It was the first time for a long time that I felt I had anything to give.

She had wanted to be a beautician, she could see what was good and bad about the NHS, could tell how the ward could be less scary, which nurses were kind, why the meds trolley needed its squeaky wheels oiled – from the little big things, to the vast swathes of improvement needed. We ignore people like Lesley-Anne at our peril. She died. I will not let her ideas die. She got me back on the road to giving…

Over the last few years, I have witnessed a groundswell of people like us. We need a stronger collective voice, and we need to build opportunities to equalise power.

I have also witnessed staff wanting to reach out, who are tired of tick-box approaches to ‘patient and public engagement’ – we all want new ways to come together, to be round the table, to hold difficult conversations in a safe way. I write the book because we need each other – we need difference (the grit) and partnership (the balm).

I see staff groping for solutions to problems, but unclear how to change things. I know patients can help. I have seen it time and time again.

For all these reasons – personal and professional, creative and logical, individual and collective, for patients, carers and for staff, for the future of the NHS, for a way forward that seeks solutions rather than builds on the volatility, polarisation and negativity that poisons us slowly and is becoming systematic… and as I get older, all I want is what I have always wanted… to help make things better.

I am also at a point where I have sufficient professional confidence and credibility to believe we are reasonably on track with our analyses of what is wrong. I get a feeling we are saying the same thing, across all these chapters. And that our diverse paths are charting similar territories.

Finally, I am proud of how we have written this book, trying to practice what we preach, talking to each other and listening to each other about how the chapters should be written, and what messages we want to articulate. How we do things (kindly) is as much at stake as the purpose. Come to think of it, kindness is the purpose. What else is there?

——————

The Patient Revolution – how we can heal healthcare, published by Jessica Kingsley Publishers is out on September 2019. There will be a launch event in October, which will be live-streamed.

You can order the book now here

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

Simple Is Not Easy – why changing stuff in the NHS can be so damn hard…

You may disagree but Leeds Utd played beautiful football in the 70s. Simple, short passes and/or elegant sweeping attacks. Jazz pianists make it all look and sound so smooth.

But, boy did both sets of players practice their moves. Simple is not easy.

A year or so ago, at our Sussex MSK Partnership, we found it hard to purchase the right chairs for people with who used our services. People in waiting rooms found our seating uncomfortable and some needed chairs with arms so they could lift themselves in and out of them. Simple enough, right?

But we rent our specialist clinic from the hospital. And we had to try to find its Estates and Facilities department. There was no additional budget for equipment our end. And the issue was nobody’s responsibility it seemed to me. It took months of wrangling over need, finding out where decisions could be taken and identifying pots of money. The physio lead and I were seriously discussing buying them out of our own money at the local Ikea. Eventually, through schmoozing and good relationships we got the chairs. This is nobody’s fault. Simple is not easy. The saga has become known as ChairGate internally.

Our patient and admin staff-led project now known as ‘Communication, Information, Access’ (CIA) has been calling for months for a total revamp of our website. Once again, there was need to demonstrate need (was it just a content issue? Was it about speed and functionality? How did it link to our wider comms work), think through whether it was a priority and find the right people with the time and energy to do it. It has proved tricky. It didn’t help when I confused the issue by raising the prospect of moving to a completely different platform (which was then understood differently by different people as requiring too much time and energy). We got there in the end and we should have a much improved website soon. Simple is not easy.

Meanwhile, the CIA group (and more particularly, one of the amazing admin members of staff, Julie) spotted that patients wanted to know whether our service had received their referral from their GP. Many were phoning their practice who would then ring us. A simple text confirmation that we had received their referral would fix that. Simple?

It has taken many many months to get there. It needed me to go up to the IT department and push a little (they are lovely but excessively under pressure) and to try and fathom how much it would cost and where it was on their priority list.

It is simple to say ‘just do it’ but the list of other stuff they have to do first is humongous. It helped that the person in charge of budgets was there when I went up to speak to the guy with the nous to work out how to do it – both had long recognised the need (all staff want to do the best they can for patients in our organisation, please believe me!).

So, finally, it all came together like the numbers on a padlock – aligned at last… evidence of need, desirable and feasible solution, gatekeepers to the decision making and unlocking of resource and money. Simple. Not easy. I do believe patients as partners in decision-making can smooth the path from idea to solution by the way!

This is the NHS. Many patients, justifiably angry when things are not done and justifiably frustrated when simple fixes cannot be done quickly can leap to a story about what happens behind the scenes – that those in power do not want to do the things that matter.

But there are two assumptions and interpretations made there – firstly, that there is someone who has that magical power switch and can just do it or get it done. Secondly, that the delay in getting it done must therefore be based in some sort of malign or blocking intent.

Well, sometimes the above things can be the case.

But not in our organisation I don’t think. What I have seen is that the systems and culture can be frustratingly difficult to navigate at times – sometimes for understandable reasons – and that aligning the numbers and releasing the padlock may look simple. But is not easy.

The NHS will never sweep upfield elegantly. It will never be a jazz pianist. Those who can influence culture and systems do need to make it easier for patient-led solutions to happen. I see that as very much part of the Patient Director role. But: simple is not easy.

Good luck with your own ‘simple but not easy’ work.

—-

© 2019 David Gilbert

If you liked this blog, check out others at http://www.futurepatientblog.com

Poems From Down-Under

Thank you to all my new friends in Australia. These are for you and your beautiful country.

—-

Melbourne: The Beginnings 

A string of lights glimmering in the grey
a blurred vision of the runway from the cockpit
the rumbling undercarriage, an aria
prior to the descent. A horizon that is once again
curved. I am still awake.

I have a friend these days who lives in Sunshine, Albion.
He is a secret poet. And all sorts of folk touch me
on the arm, then whisper their scars.

Listening to Springsteen. I would usher up
the years of the yard, burden them with what I had
as if it was 1977. Ian Drury, Elvis Costello,
Low and Heroes. I am of a mind to take back love

from those who took it from us. I cannot think
of what I could have done better to arrive earlier
and though it is late this is all I have.

In Fitzroy Gardens by the pond with a limping gull
mysterious songs of unknown birds
I met a plastic surgeon with a labradoodle.

I am tired of having to say it twice. I recede
like an echo no longer aware of the flight.

Birdsong like bell-chime. You have not known
weather like this since you were a child
light wind on your face.

How many breakdowns do you need to have?

I was a fifteen year old bionic boy
layer upon layer of redundant superpowers
requiring excessive maintenance.
Kept thoughtful and alert.

A verisimilitude of grace, untoward happenings
nightmares of the most extraordinary power.

He told me that jet lag might take a day or so to kick in
but that I had found the perfect beginning to my stay.

I am by the Scarred Tree. A tall transvestite
with a camera tripod, unblinking, severe,
casts her eye across the park, obviously displeased.
Life is brutal to the touch.

Later, lost by the MCG, loudspeakers blast
recordings of the action – baying and roar,
home crowd chanting, referee’s stuttering whistle
then the call for that last minute play.
—-

 

Melbourne: By Night

 

I have made it around the world.
It is dark here earlier than I had imagined.

I am alone in a large hotel room
under the eye of a small red light.

On the way in, all I saw were shopfronts
and bright foyers of modern hospitals.

It is warm. I have left the window open.
I sense the oncoming rush of rain

its felicitous power and yet another
take on this whispered brokenness.

I have my earplugs on
but still can hear the hum of cars

like love brewing in the darkness.
Soon perhaps I will allow my chest

to breach open, the night air to seep in
and un-ask any further questions.
—-

Melbourne: By Day

Near where fallen oak leaves gather gold-lit
like filigree at the edge of the path between
the Grey Garden and Temple of the Wind
we sidestep a wedding party. They are all

laughing at the bridesmaids shoving leaves down each others’ neck and the bride is removing her immaculate shoes so as to feel the velvet grass of her own loveliness and the groom looks across as if blessed then up at lorikeets burning skyward and we are all uninvited guests everyone wondering whether to (why not?) dance as we have all made it (how come?) this far
—-

A Coolamon 

is

axed from the red gum’s outer bark, shaped
by an adze, fire-bent, rubbed with animal fat,
shiny, waterproof, uncrackable

is

for carrying nuts and fruit on your head
attached by a ring pad made out of possum
human hair string, twisted grass or feathers

is

to cradle babies under your arm when travelling
or for winnowing grains or as a digger
cooking vessel or even umbrella

is

my word’s small vessel in which I ride
an opal birth of the wave all the way to the wide shore
where sand meets that white water’s grave

is

where you will gather these seeds
cast to the air when I’m gone, for the wind
once more to carry the husks
—-

A Diary of Sorts
For Allie and Helen

Thursday – the sign on the cage says ‘push’ and so we do
and come eye to eye with a shaggy wary hook-beaked bird
The Tawny Frogmouth, that apparently screams cat-like
when distressed, defends in mobs, sprays shit on predators
but takes uncommon care as a father

Friday – we drive up into Hunter’s Valley
share crime brûlée, almond sponge and chocolate tart
come home slightly sozzled, munch crisps all night on the sofa

Saturday – The drought is over. And while we are listening to rain
Allie tells a story about the hail, how she was driving
as clouds gathered then turned off the highway
to find herself at the centre of the storm
with stones as large as tennis balls

that buckled the bonnet                  how scared she was
how scared she can be                     how scared we all can be, I say

Sunday on the porch – Four white cockatoos as big as hawks
head off nowhere as ever screeching
bins are being taken out
machines of some sort rumble
a lock is turned

I am thinking of Palm Beach – the view from the lighthouse
slow boats with ballooning bright sails entering the mouth of the bay

How you have let me in

—-

Insect in The Sydney Botanical Gardens

It is a beautiful day. Everyone is happy.
Two girls splat a bug
flat black, scooped, stringy red and green
insides out. Squished.

The teachers told us to love
we are part of everything
and as much as we were scared of them
they are of us.

How can insects make such terrible demands?

The secret I suppose is not merely to attend
but transform – this being the idea behind
stories we tell of cocoons –

how bugs knit so as to be one another
in latitudes and swarms.

The creature we cannot identify is ours.
Pinned down. Remembrance
of sting and microscope.

We like to say we notice from time to time.
We don’t, or at most
not with the care we once had.
—-

There Is Enough

There is enough to keep you going for a while.
I guess you saw that man yelling from within his car
and his windows steaming up.

Fair enough. You too have needed skin
and not, until now, to address and undress your knowing.
They say that you have to write more closely.

That it is all in the detail.
It comes as no surprise then
that a pair of collared doves arrive

on the overhead wires.
How do you learn to live soft?

Let us draw a line like a zip
that gives, opening up on the flesh
and muscle and bone of your unknowingness.
—-

 

All poems © 2019 David Gilbert

If you like my poetry, you can find ‘Elephants Fragile’ here

My first full collection ‘Why I Left The Island’ will be published in 2020 by Cinnamon Press.

Rethinking Engagement

The following blog first appeared as ‘Rethinking engagement’ by David Gilbert
BJPsych Bulletin (2019) 43, 4–7, doi:10.1192/bjb.2018.55

© The Author 2018. This is an Open Access article, distributed under the terms of the Creative Commons Attribution licence (http:// creativecommons.org/licenses/by/ 4.0/), which permits unrestricted re- use, distribution, and reproduction in any medium, provided the original work is properly cited.

Summary

People affected by health conditions bring insights and wisdom to transform healthcare – ‘jewels from the caves of suffering’. Yet traditional patient and public engagement relies on (child–parent) feedback or (adolescent–parent) ‘representative’ approaches that fail to value this expertise and buffers patients’ influence. This editorial outlines the emergence of ‘patient leadership’ and work in the Sussex Musculoskeletal Partnership, its patient director (the first such role in the National Health Service) and a group of patient/carer partners, who are becoming equal partners in decision-making helping to reframe problems, generate insight, shift dynamics and change practice within improvement and governance work.
Declaration of interest David Gilbert is Director of InHealth Associates Ltd, a small consultancy organisation that supports patient and public engagement.

‘Some important principles are becoming well established: these are the antiseptic power of transparency, a commitment to both personal and shared responsibility and a renewed engagement with patients and the public.’ Rethinking Regulation. (p. 21)

Calls for patient engagement in mental healthcare seem ubiquitous. There appears to be a consensus that people who use services must now work alongside staff to identify solu- tions to current healthcare challenges. However, if we are serious about this renewed engagement, we need to think carefully.

The task is fourfold. First, we need to learn to value what patients can bring, which I call ‘seeing patients as partners’. Second, we need to change how engagement is done, by rethinking the engagement process. Third, we need to support people’s capabilities to better work together. This includes developing the right skills. Finally, we must develop new opportunities for patients to influence decision- making by creating new roles.

—-

Valuing what patients bring 

People who have been affected by life-changing illness, injury or disability can help. We bring jewels of wisdom and insight from the caves of suffering– we know intim- ately what it is like to feel vulnerable and powerless, the effect of pain and suffering on lives, the primacy of healing relationships in care and what good and poor services look like. This combination of vision, humanity and integrity are essential components of high-quality leadership.

About 20 years ago, I was sitting on a psychiatric ward with nothing to do – the lunch had been awful, the occupa- tional therapist had been sacked (so no activities that after- noon) and the ward seemed full of screaming folk. A doctor strolled onto our bay and gave a perfunctory nod before gingerly pulling on the curtain rail beside my bed. Even in my disturbed state, I could see his behaviour was odder than mine. I asked him what he was doing. ‘Just checking to see if you could do anything stupid’, he replied, before walking back down the corridor. I was left contemplating the sudden and unintended addition to my range of ‘treatment’ options.

Fast forward 10 years: I was Head of Patients and the Public at the Commission for Health Improvement, the health inspectorate at the time (predecessor of the Healthcare Commission and Care Quality Commission). I was reading the National Patient Safety Agency standards on mental healthcare (though I don’t recall which one, exactly). One of them was to decrease in-patient psychiatric suicides to zero by…. removing all non-collapsible curtain rails.

I remembered that doctor who had checked my curtain rail. At about that time, three fellow in-patient friends of mine died. One had choked to death on her food while unsupervised, after she had left the psychiatric unit and gone to a nursing home (she had earlier been paralysed from the neck down through a failed suicide attempt). One had gone to his caravan and hanged himself. And one had drowned himself in the local reservoir.

All those deaths had occurred away from the in-patient environment, so the unit would have passed its inspection by having removed ligature points. It might also have been congratulated on its risk policies. This was ‘hitting the target and missing the point’. The unit had responded to the caravan and reservoir deaths by locking the doors at 20.00h. This deprived me of my one visitor, a local chaplain who I could only get to see at 21.00h. Nights became a pressure cooker of aggravated emotions – the consequence of this lack of trust and forced containment felt unsafe. I wonder whether dialogue between us in-patients and staff about what makes for a safe environment might have saved my friends.

Later, as part of a Collaboration for Leadership in Applied Health Research and Care Fellowship (North-West London), I undertook qualitative research that revealed seven benefits of high-quality patient engagement in improvement work (https://futurepatientblog.com/2015/03/ 22/seven-things-that-patients-bring-the-benefits-of-patients- as-partners-for-change/).

I found several distinct benefits. Having patients as partners in the room will reframe the problems to be tackled. Focusing on what matters to patients leads to pathway redesign with better awareness of access issues, information and explanations needed at each stage, more humanity and better customer care. Patient engage- ment also promotes the finding of potential solutions to pro- blems. Patients have the passion, insight, imagination and freedom from institutionally limited thinking to ask ‘What if. . .’? They also widen the array of options for improvement and change.

This process necessarily leads to changed relationships. With patients in the room, others are given permission to explore. Dynamics change, trusted relationships develop, people work together and move beyond us–them conversations to dialogue. Shared decision-making emerges. There are also individual benefits. Patients feel more confident, develop new skills and build on those skills buried during times of illness – and come to feel better.

Staff gain too. Morale is lifted as conversations become about what can be done, they can feel that we are truly all in this together. This sort of work rehumanises healthcare. It should be noted that this approach may also help staff who suffer emo- tional distress. In mental health (and perhaps beyond) there has never been a better time for people with health problems to work with staff (clinicians and support staff alike) to change and improve approaches to well-being and to explore our com- mon humanity, rethink professional role boundaries (the ‘them and us’ mentality) and approaches to safety and risk.

The result is better quality decisions. If people know why decisions have been made and been part of that process, this generates trust, confidence and it becomes easier to build consensus. This has deep implications for transparency, governance and accountability. I have seen and heard about dozens of changes in policy and practice as a result of patients being partners in improvement work: making guidelines more flexible, better ways to tackle access and equalities, tackling attitudes and behaviours, different ways of meeting unmet need, the list is endless.

There are even benefits beyond the project. When people see the advantages of patients as partners for improvement and change in one area, they will help spread it to others. It is a virtuous cycle with implications for scaling up improvement pro- cesses, spreading good practice and sustainability.

Changing how Engagement is done

The traditional approaches to involving or engaging patients do not work, and so we fail to value the jewels offered or to change the ‘currency’ of healthcare toward what matters. Patient and public engagement, as traditionally conceived, buffers power by distancing patients from decision-making.

Thus, it maintains the status quo by preserving the institutional authority of professional system leaders. Ironically, when engagement is seen to fail, as it often does, this can be attributed to the lack of value that patients bring rather than to faulty mechanisms. The engagement industry focuses largely on inputs, activities and processes (the methods of gathering data, how to capture views, etc.) over impact and outcomes.

The approaches and methods used rely on two main styles. The first is that of feedback: patients are invited to fill in questionnaires, attend focus groups or tell their stories (if they are lucky) at board meetings or the like. The focus is what happened to them in the past, mostly about their experience of services (rather than living with a condition, or about their lives beyond the institutional scope of interest), and the meaning of their data is left to professionals to assess through their own lenses based on their own assumptions and often narrow institutionalised thinking (often what is seen as feasible rather than necessary).

Patients are not permitted to eyeball the data or bring their own interpretations to it, let alone be partners in deci- sions about what to do. This feedback approach mirrors traditional medical paternalistic models – you tell us the symptoms and we will provide the diagnosis and treatment. It is stuck in child–parent mode.

The second style is scrutiny. Whenever there is a governance committee, an advisory group or the like, the call goes out for a lay representative. I know a patient and public involvement lead who likened her role to that of ‘lay rep pimp’. Without clarity of role, support or training, a representative is expected to bring the patient perspective to the decision-making table.

I was once asked ‘so David, what do patients think?’. What, all of them? I thought. In search of credibility and leaning on what we know, we tell our stories, and half the people in the room applaud this ‘telling truth to power’ and the other half fall asleep (‘another patient with an axe to grind’ or ‘personal agenda’ they mutter later in the corridors). If we wise up and come to the table next time wearing a suit and tie, brandishing data, those that were awake last time fall asleep and accuse us of ‘going native’. I have written about this repre- sentative trap in more detail elsewhere.

The consequence of failed representational mechanisms is that committees lapse into a default ‘us and them’ mode. Frustrated, marginalised and unprepared representatives start finger-wagging or fall silent. This is adolescent–parent style engagement. If we are serious about partnership, then we need to overhaul the engagement industry.

Supporting people’s capabilities – the emergence of Patient Leaders

The past few years have seen the rise of new forms of engagement such as online dialogue, experience-based co- design, health champions, peer support and the like. Mark Doughty and I founded the Centre for Patient Leadership to support patients (those with life-changing illness injury or disability, and/or with long-term conditions) to be influential change agents. CPL trained over 1000 patients to develop the capabilities to work with professionals as equal partners. Further information on patient leadership is available online (http://www.inhealthassociates.co.uk/patient- leadership-articles-and-reports/).

Patient Leaders are those who have been affected by life-changing illness, injury or disability and want to work with others in partnership to influence change. This can, of course, include carers. They can have many roles. Some are entrepreneurs like Michael Seres, a patient who had undergone a bowel transplant and then invented a Bluetooth sensor-enabled colostomy bag that does not overflow. He has also led the way on remote-access technology to allow people to communicate with their clinicians, and is Chief Executive of his own company, Health 11.

Others are campaigners or activists, online dialogue specialists, improvement advisors or help organisations as governors or are part of inspection processes. They work at local, regional and national levels. (I am writing a book entitled ‘The Patient Revolution’, which will be published in September 2019, that is based on the stories of 15 such people, including Alison Cameron, Ceinwen Giles, Dominic Makuvachuma-Walker, Patrick Ojeer and Sibylle Erdmann).

There needs to be wider investment in skills development; indeed, one might question why tens of millions of pounds is spent investing in the capabilities of managerial and clinical leadership, and none on this emerging army of people who could – and I think will – regenerate healthcare. There is still a widespread assumption that system leaders are professionals, but for Patient Leaders to achieve their full potential, they also need the learning and development that enables them to be true leaders.

Finally, there has to be an equal emphasis on creating the right opportunities, for example, in governance, research and audit, service improvement and training and education. This could be at a local or national level, but needs to be where professionals are willing and able to work as partners too. Opportunities must also be created at a senior level. In much the same way that it is not considered appropriate that a service purporting to deliver ‘women-centred care’ is led entirely by men, in a few years’ time it will seem odd that we have ever had a patient-centred National Health Service (NHS) run entirely by clinical and managerial leaders.

New opportunities – the Patient Director and Patient Partners

The Sussex MSK Partnership (Central) made a brave decision to appoint the first patient director – someone who has had experience of a life-changing illness, injury or dis- ability (in my case, mental health problems) and can harness these experiences at senior decision-making levels.

This role ensures that patient leadership is embedded at a senior level, within an executive team that includes a clinical director and managing director. This models shared decision-making at corporate level. The patient director’s role is to help the Partnership focus on what matters. This includes embedding patient-centred cultures, systems and processes such that they become ‘hardwired’ and making sure we learn from, and act on what patients’ think about services. The patient director will also support patients to enable them to be influential and valued partners in decision-making.

Being a patient director has enabled me to experiment with a different approach to engagement. For example, we have eight patient and carer partners. They bring profes- sional and personal wisdom alongside their experiences of using our services. Patient and carer partners are not repre- sentatives or there to provide feedback, but are ‘critical friends’ who check assumptions, ask questions, provide insights into reframing issues or identifying problems, change dynamics and model collaborative leadership.

My role is to broker opportunities in improvement or governance and support them to ensure they have the cap- acity and capability to be effective. Patient and carer part- ners augment other involvement and feedback work. This work has been developed during a period of intense oper- ational pressures. During the past 3 years, the Partnership has transformed the way MSK services are delivered (through a lead accountable provider model – see box) and patient partners have been alongside as we have done so. We wanted them to be partners in every MDT that oversees quality in each of our musculoskeletal pathways (orthopaedics, rheumatology, pain management and physiotherapy).

The first step was for the patient director to identify opportunities for meaningful engagement and ensure their presence in improvement and redesign work. Then, to be clear that they were more than storytellers or to feed back on their experiences (we had other data for that), they stayed in the room, proving themselves well able to reframe problems, generate new solutions, model collaborative leader- ship and shift dynamics. Patient partners have been involved in seven major improvement programmes: pain ser- vices redesign, fibromyalgia pathways, development of patient reported outcome measures, plans for shared decision-making, administrative systems, support for reception- ists and call handlers and integration of physical and mental health provisions.

An early experience helped us to demonstrate benefits. We were discussing how to communicate with patients about booking appointments. We were receiving lots of calls to cancel or change inconvenient appointments that we had booked for people.

A woman who had been through our service, told us that our team phoned at inconvenient times to book appointments. She suggested that, instead, we send opt-in appointment letters and put her in the driving seat. Let her phone back when she had her diary in front of her and she could plan out her week. We experimented with the idea and it was successful, with patients and call handlers alike delighted with how it worked. If this approach were rolled out, we would save an estimated 3500 cancelled appointments per year.

Slowly, they have become trusted equals. It has not been easy and is dependent on clarity of role, shared understand-ing of purpose, demonstrating benefits and the perennial time, money, space, trust. . . all things the NHS has precious little of. We are ready for the next step – for partners to move from an improvement role into a more steady-state governance role.

However, given inevitable resource constraints, we realise that we cannot support two patient partners in each of our eight MDTs. So patient partners have come up with a different approach: the idea of a pilot special MDT. This might model the sort of reflective dialogue they want to demonstrate and focus on issues of quality and patient experience. We would evaluate the work and see whether it could be a model for other pathways. Members of the hip and knee pathway MDT seem keen on the idea, and next month we will be talking to them about how it could work.

We will also discuss whether and how we can ensure that patients are a part of regular MDTs. Several other clinical leads are watching this experiment with interest, and it could pave the way for a different model of reflective govern- ance across the Partnership. It has taken 3 years for this work to take off – the role of patient director is still novel, and this particular model of patient partnership is an experi- ment. It has taken months of building relationships, doing the ground work and making the case for a different model of engagement.

In the current frenzy surrounding NHS policy and practice, it is worthwhile remembering that long-term improvements take time, space and trust. There are no quick fixes. Our work in Sussex demonstrates one novel approach to the challenges of rethinking engagement. It is predicated on the four steps necessary to renew engagement – to value what people bring, establish different mechanisms for dialogue, to develop people’s capabilities and provide new opportunities for the new breed of patient (or carer) leaders. Looking back, I now wonder what might have hap- pened if a patient director had been around when I was on the psychiatric unit. Might my three friends still be alive?

______________________________________________________________________________________

BOX SECTION – About The Sussex Musculoskeletal (MSK) Partnership (Central)

The Sussex Musculoskeletal (MSK) Partnership (Central Sussex) receives referrals from general practitioners of people who have joint, muscle or bone problems. The service stretches from Brighton and Hove, through mid-Sussex and Horsham to Crawley. Clinicians screen referrals, and many are offered an appointment at our specialist clinics, with advanced MSK practitioners or physiotherapists (often working alongside consultants and others, such as psychologists).

The Partnership is a lead accountable provider. It comprises the Sussex NHS Community Trust, Sussex Partnership Trust, HERE (a social enterprise) and The Horder Centre (a charity). In Autumn of 2015, three clinical commissioning groups pooled a total of £50 m per year for 5 years to us, so we could run a better system for people who use services. We want to get it right first time, so that people do not have to go here, there and everywhere for different diagnostic and treatment interventions. And we, like the NHS rhetoric always says, want patients to be at the heart of what we do.

_____________________________________________________________________________________
David Gilbert is Director of InHealth Associates and Patient Director at
Sussex Musculoskeletal Partnership (Central Sussex), UK.

References

1 Professional Standards Authority for Health and Social Care (PSA). Rethinking regulation. PSA, 2015 (https://www.professionalstandards. org.uk/docs/default-source/publications/thought-paper/rethinking- regulation-2015.pdf).

2 Gilbert D. The Jewel Merchants – a parable for healthcare. Future Patient, 27 January 2017 (https://futurepatientblog.com/2017/01/27/the- jewel-merchants-a-parable-for-healthcare/).

3 Gilbert D. Seven Things That Patients Bring: The benefits of patients as partners for change. Future Patient, 22 March 2015 (https://futurepa- tientblog.com/2015/03/22/seven-things-that-patients-bring-the-bene- fits-of-patients-as-partners-for-change/).

4 Gilbert D. The Rep Trap. Future Patient, 5 December 2014 (https:// futurepatientblog.com/2014/12/05/the-rep-trap/).

Poems From Wales

I wrote the following poems during a Cinnamon Press Workshop last week. I hope you like some of them. They will appear in my forthcoming collection ‘Why I Left The Island’ in Spring 2020.

I have also taken to writing more about my Jewish experiences, and about my uncle Robin. I include one or two experimental pieces that will form part of a prose-poetry project about his time in Yemen in the 1950s.

 

 Longshoes

On Saturdays, when all things must have hurt
I would visit Pam’s House, Liv, Belinda, Als
Marley the Hamster and Basil the Goat.
Liv called me Longshoes. I was forever dubbed.

We would crowd round the kitchen table
like I had never crowded. Then Pam brought back
the head of a manikin from her foray in a skip.
We glued on a long blonde wig and hung it

from the ceiling to cover a huge crack.
And beneath it, Me and Liv watched Wimbledon
me rooting for McEnroe versus Borg
my arm aching to reach around her shoulder.

It was where I thought I would have been able
to love most. Next morning, near a pagan site
in the middle of Hampstead Heath, they found
the charred bones of what might have been a goat.

Films I Am Still In

I am with my best mates
hunting down a dead boy’s body

in Stand By Me
willing to shoot a bully

watching a deer on the morning track
up all night for my buddy blubbing

on a dragon ride
in Never Ending Story

talking Italian to my confused Papa
before Breaking Away

on my back, legs and arms waggling in the air
under a tree with Gregory’s Girl

forever in goal on a muddy pitch
in ballooning shorts from Lost Property

swinging on the rickety bar
broken by a dead kestrel

Slip

I want to slip down to the river
unnoticed, unknowable.

I was pictured here once in a knitted pullover
dwarfed by a pink rhododendron bush
smiling. Fixed. Seasonal.

I am in need now
of the long breath and dropped shoulders.

A girl in jeans with a flowery knee patch
reaches up for the hanging branch of a willow
ignored joyously

a couple take it in turns longingly
to photograph each other by the blossom
positioning the camera any which way while

fluffy cygnets pursue their decisive mother
down to the water. I slip better now

no longer held by the lens.

But Much Is

It is hard to avoid the difficulty of sadness
whilst listening long-distance
to another’s song

as when strangers curve into each other’s
unlikely bodies, whiteness
of mute swans

muttering quietly, then mirroring a heart.
Indistinguishably apart.
But much is to do

with that thin brightly-lit sorrowful
stuttering attention. Pain
is what binds love.

 Turning Back

We set out, the rain stubborn in its hammering
and tried to clear the valley
but the silver waters draining the hills
had pooled the roads and the small car too low
to get through lakes rising between towns
more powerful vehicles than ours struggling
settling at an angle, two wheels on the pavement
slushing past, no other route out of, or around.

Even to go back the way we came risked waters
we had come by gathering themselves up
and heading back the gale was stronger
rain at the windscreen so hard, I felt a breaking,
a frenzy of wipers in the brain, landscape closing in
the road only just making itself out through the whiting
tops of trees in the seething river breasting the brown waters
sheep sheltering in the crevices of rocks.

Now we wait it out. I spend the afternoon
making sure my paperwork is done
so I can get home unruffled tomorrow
or the day after. I like to think the hills
did not want to loose their hold. Or that the rain
was like harsh words that force you to be more slow
with love, with so many fools gone before us
come unstuck, whittling us back to only what we need.

The Bread Knife

I feel as if I have been stolen away
like the black-handled bread knife that disappeared

from my mother’s kitchen. She was old by then.
We looked down the backs of cupboards, under the bed

and exhausted all her usual places.
We fell to imagine what must have happened

and made up stories to fill the suspect silence.
Do knives have a mind of their own? We feared

the kids had it for some extra-curricular project.
Sometimes we sensed, mustard-keen that it was close

and sharpened by its singularity.
But after a while we forgot and got on with other things

deserving a rest from our feverish speculations.
We never found it.

Where do knives go?
Sometimes you are left without reason.

I Am Wished Away

this time by a gentler wind
threading blue smoke ghost-like through the pines
across the faces of the hill rising above the valley
rivulets like fingers reaching down for the curve
into the sheltering town within our silver bus,
a blackbird on the overhead line, gulls on parked vans
by the cemetery and post office and chapel and pub
easing into one slow final turn, readying for arrival
bright as grass after rain, golden lichen feathering
the black bark, red as a letter box, quiet as stone.

Being the Jew

Unnoticed, he wondered whether he should say anything
thinking that perhaps being unable to blend in
might be both easier yet more difficult.

Let it pass.
Life goes on.

It was slight enough to have been
nothing but a slip of the wine-loosed tongue.

Who means it these days?
Anyway he had met too many bitter Jews

and it was late in the evening
all those around him
seemed to be having fun.

Memo on the Aden Riots, December 1-3, 1947

From here, you can still see the skeleton
of the gutted Jewish boys’ school.
It is not that we are not used to pogroms.

But in Yemen they were rare
religiously motivated outbreaks of violence
and one relatively small riot

in May 1932 when a few Muslims
accused the Jews of hurling excrement
into the courtyard of the mosque.

The Farhi synagogue was desecrated.
Now there was radio, ‘Voice of the Arabs’
and incendiary UN declaration on Palestine.

At first, it was just bottles and stones.
Jewish shops and homes were ransacked.
The second day brought guns and rifles

and innocents on both sides were fired upon
in the Port Towns of Steamer Point and Tawahi.
Then the curfew in Crater failed

and military (so-called) were brought in –
1,800 Aden Protectorate Levies –
who, they said, shot indiscriminately.

At the end of three days, they counted
76-82 Jews and 38 Arabs killed
(six unidentified) and 76 Jews wounded.

More than 100 Jewish shops were looted
and 30 houses burned. Like a typical
Russian pogrom, the hooligans were unleashed

for several nights and days after which
the police would step in
to arrest the Jews who had resisted.

British officials received all unburned cars.
The head of the Jewish community gave his
to his erstwhile friend, the chief of police.

The aptly named Harry Trusted
led an official enquiry and put most of the blame
on Yemeni “coolies” temporarily in the country

who “have a low standard of life,
are illiterate, fanatical and, when excited,
may be savage.” The Brits meanwhile

in embassies around the world whispered:
How could they urge the Arab States
to protect their Jews when they themselves

had been unable to? And I heard later
at a dinner party, that many Arabs and Indians
had sheltered their Jewish neighbours.

In The Courtyard of the Yemenite Jewish Silversmith

We are the labbe necklace
airy, open, interlaced
strung upon a cotton or silk thread

We were silver wire cut
and concealed within ashes
then heated to become droplets

We were soldered together
one beneath the other
in the shape of a figure-eight

We are a spider’s web
of rhomboids, squares and rectangles
round beads or rosettes

We have been placed upon
a patch of woven cloth
to protect the skin from abrasions

We will once again be studded
with pearls and amber
coral and coloured glass

We are worn
sunken in the hollow
beneath the Adam’s apple

 


 

All poems © 2019 David Gilbert

If you liked these, do order ‘Elephants Fragile’ which contains others. From Cinnamon Press https://tinyurl.com/yyluw7j3

And see my other blogs at http://www.futurepatientblog.com