Coronavirus & OCD

This guest post is by Steph. It was previously published on her blog site. If you would like to write a guest blog, please get in touch.

CORONAVIRUS! It’s all anyone can talk about these days. Understandably so, as it’s a very serious and very scary pandemic. From what I understand, if you do catch it, it is not as much similar to catching the Flu, but more similar to a severe Pneumonia. This genuinely frightens me.

I am doing my best to self-isolate as much as possible. My managers have allowed me to work from home, and I only have to come into work two days a week. On those days, I can also get a taxi, which they will reimburse, rather than me taking the metro for 45 minutes. I definitely find this to be a bit of a relief. Right now, I want to stay at home as much as possible!

Now, I know a lot of people are scared right now. There has been lots of panic buying, mask-wearing, social distancing… What I’d like to chat to you about is living during this current pandemic while suffering from OCD.

I already wash my hands more than the average person. And although some people with OCD do this due to the worry of germs and contamination, mine is slightly different. I do worry about germs, as I tend to get sick very easily and catch everything, but I also wash my hands a lot as they just physically feel dirty.

The way I usually describe it is: You know when you’ve been petting a dog for awhile, and then your hands feel like they have a film or layer on them…? You feel like you need to wash your hands, right? Well, I feel that layer quite often throughout the day. At any point in the day, my hands will suddenly feel grimy and ‘dirty’ and I will need to go wash them. I won’t feel comfortable until I do. I also don’t like using bars of soap, as I see them as a breeding ground for dirt and germs. I much prefer liquid soap from a pump dispenser. I also don’t like using hand towels, as other people have used them, so they are ‘dirty’. I prefer kitchen roll or something of the sort. One-time use and disposable. Much cleaner.

Now, you may have been experiencing this over the past few days, but imagine being constantly and acutely aware of everything you touch. Feeling the constant need to wash your hands after touching certain things. The fear of rubbing your eye or itching your nose in-between touching a doorknob and washing your hands again. Noticing every single cough or sneeze from another person, and worrying you were too close to them when they did it. Having someone get close to you, and panicking that they’re breathing on you and you’re inhaling their germs as we speak. Going on a metro or in an enclosed space, and wondering if you’re currently breathing in germs while just being there.

You may be able to relate to some of these things from over the past few days, due to the Coronavirus. But for some people with OCD, we’ve been feeling these feelings and thinking these thoughts and constantly worrying for years now. This is our life on a daily basis.

Have you noticed how exhausting it is? All the constant worrying and constant alertness? Or how sore your hands get from all the washing? Although this Coronavirus is horrible, maybe it has given some of you who don’t suffer, a glimpse into what a typical day with OCD is like.

And if you think the constant worry of being clean and not spreading germs is exhausting, try having that, plus 30 other things in your head which are just as acute and just as concerning, all at once. People don’t often realise how tiring it is having OCD. Our thoughts are never-ending and go a million miles an hour. We fear things that we know are completely irrational. We are constantly switched-on and can’t find the off-switch.

I could go on and on about what it feels like to have OCD, but it would be too much for one post. With everything that is going on, I just thought it might be useful to share what it’s like from an OCD sufferer’s perspective. This may be one of the only rare times people get a chance to try walking in our shoes. To be honest, you’ll never fully understand OCD unless you have it, but maybe this current situation can give you a small idea of how we live and feel day-to-day.

Whether you suffer from OCD or not, I hope you are all staying safe, and please be considerate of one another! We are all in this together, and we will all get through this together!

Those of you with OCD… How is Coronavirus affecting you right now? What are your struggles? How are you coping? Any tips for other sufferers? Let me know!

Here are a few tips I have for fellow sufferers during this difficult time…

1. If your hands are getting sore from the constant washing, every evening when you go to bed, put hand lotion on and then some thin cotton gloves (if you have some). It will help rejuvenate your hands and combat some of the damage you’ve done during the day. I personally recommend Neutrogena Hand Cream Concentrated. You only need a dab and your hands practically transform overnight!

2. Stay indoors as much as possible. We’re supposed to be staying inside right now anyways, and it can trigger you less if you’re not exposing yourself to the mayhem outside. (However, once this has all died down, don’t continue to isolate. Get some CBT Therapy or help from loved ones and don’t let OCD house-bound you. Staying in is a temporary solution in an already very stressful time).

3. See if you can set-up a Skype or phone session with your therapist. If you have contamination fears, you’re going to need your therapist now more than ever. Don’t fight this alone!

4. Use your support system! Your stress level is probably through the roof right now, but try to talk with friends, family, whoever your support system consists of. Tell them how you’re feeling. Talk through things. Bottling up how you’re feeling is only going to add to the stress and exacerbate your OCD even more. Again, don’t fight this alone!

5. Hang in there! We’ll get through this!

This guest post was written by Steph. You can find her on Twitter @The_Lotus_Diary: “My name is Steph and I live in the UK. I suffer from OCD, Tourette’s Syndrome, Depression, and PTSD. I’ve been through quite a lot in my short 30 years, and so I’ve created a blog called The Lotus Diary. The idea is for me to share my story so hopefully others don’t feel so alone. Please check it out! And I’d love to hear your story! “

(C) 2020 Steph

 

 

 

Virus and Verse – how Covid-19 brings to light the human dilemma

A virus – a sub-microscopic infectious agent – is shifting how we connect to ourselves, our fellow human beings, society and the earth. Such a small big thing.

Others comment on the science. Or on the ideological narrative – which nation or leader is right or wrong about herd immunity theories versus immediate lockdown and the relationship between science, national culture and political decision-making.

Others comment on the health service – whether it has been well-led and collaborative in terms of shifting quickly to a crisis-enabled urgent care model, or its failure in terms of protective equipment and testing. The political view taken will depend on the leftist or rightist lens one sees through.

Apart from doing my bit where I can, or keeping safe and well, I am intrigued by the narrative that plays out. And, in particular one way of looking at the bigger story, or perhaps the psychological one.

A small big thing. The virus has unlocked a core dilemma for our species. Perhaps therein lies its wider meaning. Will we come out of this more cautious, risk-averse, hunkered down, more isolated from each other, with the resonance of fear and anxiety that prevails over empty schools and lonely parklands?

Or will it trigger a sustainable wave of collective generosity, a spread of communal reaching out between local people getting to know their neighbours and their needs, or sharing music through space (literally and metaphorically)?

The play between being alone and belonging is our core dilemma. How we live, balancing the spirit of individualism and collectivity, freedom and community, reaching out and reaching in is at the core of our ‘responsibility’ or ‘response-ability’

In other words, will the silence in which we find ourselves, let us connect more deeply – with ourselves, each other and the earth? Or exacerbate the fear of loneliness and resultant disconnectedness? Will we come out of it more ‘for ourselves’ or ‘for others’. Which way will the species tip?

How to discern the patterns and competing forces at play – lockdown versus connected?

Of course, writers and readers know that our purpose and meaning is interwoven with the narrative we hold of ourselves and of others. Times of uncertainty can be both crisis and opportunity in terms of seeking to reframe who we are and what we need to do on this planet. That is why I am drawn to poetry. As Emily Dickinson says: ‘Tell all the truth but tell it slant’

Since my narrative is one that holds up hope of a more connected world – a kind, wise-mind that values the fact (see, there I go, holding up my own opinion as truth) that we are all connected….

I sense this may be an intriguing crossroads. May you choose wisely.

Meanwhile, here are three poems which tend to say things better.

 The Stars In Their Distancing

There is the day’s drama of course
making life difficult

but when nothing happens for weeks
the spring grown quietly laborious

and single cause of lying awake
is lack of sound, the wind stopped

a solitary puff of smoke
hanging over the industrial chimneys

sheep drifting the emerald slopes
the stars in their distancing

now a substitute for your heart
detained in a silence

you thought you’d left behind
asking yourself whether anything you do

is useful or not
that is when you will be tested

The Accompaniment

The silence is how we need it to be
as if it were snowing
the traffic doubled down
to a bass note almost beyond
reach of human hearing
like when you lose all sense of taste
or are unable to name
atmospheres that dwell at home

a warm air
that could be mistaken for peace
approaches from the desert wilds
yet slows incapable
of the momentum needed
to take you anywhere
or away from anything

what we have seen today is remarkable
for its detail
or its absence – a leaf
revolving on the pavement
within its own miniature tornado
or football pitch with knobbly grass
and skewed goalposts –
like a dozy uneventful childhood

I don’t miss the chatter
but it seems we cannot maintain
this avid silence
without the accompaniment of death
terrible decisions are being made
beneath the blossoming cherry tree
and earth is restful
its corridors swollen with the dying

Lean

What we are able to do
is lean
like the slender
cherry tree

tilted
by what we have done
or been through
set against

earth’s hold
each branch
allowing itself
to fork

adjusting
to the weight
of loneliness
sparrows landing

now and then
lifting again
its crown
of pink symmetry

——-

All poems © 2020 David Gilbert

David’s first full poetry collection is published in May 2020. The Rare Bird Recovery Protocol will be available from Cinnamon Press https://www.cinnamonpress.com/

 

 

 

 

 

Learning How To Look – poems from Wales

I have come back from a writing workshop in Wales to a different world (of course). I hope you like some of these poems.

I am a great believer in words as a way of connecting to ourselves, each other and the planet. So, I hope that at least some of your time in the next few weeks and months is about that reconnection.

Keep safe. Be gentle with yourselves and each other.

p.s. My new book, my first full collection of poetry, ‘The Rare Bird Collection’ is out in May from Cinnamon Press.

______

The Household of Three Flies

I am empty in a household of three flies
and a kettle that repeatedly boils

layering my thin fear
throughout each room

and each time I open the window
to let one out

there are still three flies
buzzing about

this morning the fat dozy one
with five legs at last count

tottered to the ledge and tumbled
onto the damp ferns

as stupid as it had been when it began
and all three flies

seeming to know what it takes
to maintain their insectile opposition

to my attempts at freedom
and one, inevitably,

with five legs
remains high up in the corner of my bedroom.

 The Low Star

I dare not rise too far
for fear of being cold-shouldered
by the galaxy

so let me sketch a little
this local sky
from where I watch myself

down there on the rock
a ball of flame pooled in my palms
like a cupped wish

with wave upon wave
peeling off
into the ocean’s dark doubt

our lights
fractured and multiple
over the small inlet

 Illumination

I queued in the drizzle
to meet the master.

A black butterfly had once
landed on his forehead.

He wrote a book about it.
He told me: ‘be patient’.

That was thirty years ago.
I still get moths

stunned and staggering
around my bristling filament

 Sometimes Just This

 I need a rest from the hunt
don’t need to know why
I was broken away
from being safe
and became
the hunter and the hunted

I just need
I just need
a rest from the hunt

 

Bringing Back

Why is faith so fragile
Yet doubt so strong?

I want to bring back a stone or feather or pine cone
I can cling to

even in the rain even by the waterfall
even by the reservoir

the hill crests invisible in the mist
crow lifting off and headed into steady sheets
gulls swimming in grey air

a blackbird cocked-head listening for worms
on the soft verge by the low wall
blotches of orange lichen on the stone bridge

buds about to break from black branches
and behind the falling river’s rage
the chirrup of a chaffinch

and within its tumble and churn
a wiry tree with roots lodged
between the crack in one stone

everything slipping past
I would take it all away from myself

the collared dove rests at the very top
of a swaying telegraph pole

wires stretched this way and that across the valley
water trickling down the slate

from everywhere at once
tinkling like a xylophone

so it is not one thing after all
I am after

then the brassy honk of invisible geese

I imagine them overhead
an arrowing sign against the haunting steel
like a hallelujah arriving me home

but then I spot them tiny
close to a scrubby landmass
way out in the ruffled water

 

 

Error

This morning having already
made several fateful errors –

in the kitchen reaching up
for the tawny marmalade
(the cupboard is below the sink)

blowing on a spoonful of muesli
as if it were hot soup

swallowing without taste
and having to do everything
before leaving the house

listening to the news
and an argument through the wall
between a father and a child

late to see a robin
singing its puffed up heart out
on the folded washing line

believing only what I know –
I thought: how much more then
can the heart mistake?

What Were We Thinking?

What were we thinking
when we set out to win?

Wind at our back
breezing through stone

coasting to easeful victories
repetitious and bored

removed from consequence
or why we’d begun

until the heart
islanded, warn down

came to believe we would not
have to turn back

into the wind
or learn how to lose 

The Railway Replacement Bus From Llandudno Junction

 

This valley smells like damp old men
this bus cutting through it like an operation

you feel the back of your hand
for a small cyst that has been there for years
but seems whiter-headed now

How soon before you need routine surgery
remembering your dad’s purple hands
veins bulging light blue
how old was he then?

No artwork here
brute steel skyline
plumes of pine sucked up the hillside
one vast silhouetted slab
echoing a cave’s depths
black stone cottage backgrounded
against its own sunk puff of smoke

Hard men must always have fallen asleep
on journeys like this
leaning against cold windows
heads lolling forward
startling awake from the doze
surprised at how far they have gone
wondering whether they have missed their stop

Flood waters lining the fields
crows on the back of straggly sheep
beneath toppling rain
water tumbling down to the side of the road
two horses kicking out at each other
then bolting through the mist
two lads fetching bike helmets out of the garage –
the same freedom rush!
Why care yet what anyone thinks
or for retrenchment?

Vast grooves of mud in the estuaries
how best to understand the land
when you haven’t lived here?

Daffodils seem out early
the distant speck of buzzard
seemingly stilled in the darkening yellowy sky
scree and rubble peppering the inclines

You do not want to take too long to get used to it
do not have energy to be reconciled
any more to past wrongdoing
that time has gone

The road bends
low walls of flint beginning the climb
then mountains of black shelving
dwarfing the bus, villages and farmland

—-

 The Stance

And here at last is what I would send
(some oddball clippings

when not at my best
by the grate

kindling difficult to set alight
beast of experience

closer than previously thought
the way narrowing):

all the shells left on the sand
kite lifted from our child’s hands

landed in deserted gardens
of a hotel on the cliff face

by the crumbling high walk
with a long view of the headlands

encircling the vales
Lyme Regis in the mist

where later we would play croquet
keeping score before it rained

echoing inordinate distances
how, looming we may surprise ourselves

with a stance at once
looking forwards as well as looking back

Three Short Poems About Want

When I grow cold
thought is not what learns
the want of fire

What occupies love
for the time being
is the want of translation

Poetry is for when
you want the words
for how to love better

Learning How To Look

1.

know that
emptiness is a gesture toward freedom
that the emptiness now is not
the emptiness then

that it need not be filled
by wayward gusts of emotion
or idea of right

that a whisper or touch or sigh or even a murmur
is enough
that it need not be filled

by anything other than what is

2.

attend and intend
be kind
lean in
to self to others to the world
yet lightly

3.

safe within this skin
with its exits and entrances
I can be taken beyond my longing self

4.

you do not have to bring anything back
to him or her or them

nor does all this have to be captured
for him or her or them

nor does it all have to be done
or had now

all now by yourself

5.

believe before you know

6.

in between: The collared dove arriving
at the top of the tree
sunlight seeping through the cloud
its tail fanned out, translucent

stays for a while
then leaves

7.

before you listen      breathe
before you look                    breathe
before you breathe                          both
look and listen

8.

No need of photograph or patterning
memory or the grasping eye

more a learning how to look
less and

less declamatory than
the fall of water

and its threading under the bridge
out to the reservoir.

 

 

All poems (c) 2020 David Gilbert

 

 

 

Tosh – No more professionally-led inquiries

Last week, another report. The privileged elite assuming authority and power to proclaim insight for why I stood in front of an oncoming van.

Tosh. To their questions. To their answers to their own questions. To their ‘facts’ and to their reading of what needs to be done.

Tosh, After reading a 68 page report on suicide.

Tosh, to recommendations to reduce suicide by altering the physical environment.

One of the recommendations was extra tosh: for providers to extend their ligature reduction duties beyond the four walls of the ward – Trying to work in surrounding areas to prevent people climbing to ‘high places’ so as to swan dive. Tosh. Dangerous tosh.

(The van, remember? The van came round the corner…)

Can you know why I stood in the road? Can you know that I would have taken my life in a ‘high place’ or a ‘low place’? By a road? Or a track? From a tower? By pills? By gun…

Or why Lennie drowned himself. Three days after circling the small garden overlooking the cemetery stooping for dog-ends. “I’m not well. I’m not well, I’m…

Or why Steve hung himself in his own caravan, finding the easeful ligature of his own desiring. Three days after thumping his fist through the ward grilled windows, out of fury, out of damaged common sense, perfecting soon the art of taking his own life out of the broken circle of damaged trust.

(The van hit me)

I am not having it. I am not having these stilted reports on safety. These numbers, dead and ringing, making professorships of academics, people earning a living from the deaths of my friends. I am not having it – the pontification about safety, from those who exacerbate the problem by focusing on structural solutions, construction standards, containment and isolation.

What does safe mean to you? My relationship with myself – what my persecutory mind does to its injured fractured, fractious, fractal beautiful child-like spirit. The war and the pain that ensues and endures. I am not having it. That you are so obsessed with distance and cannot enter this.

(I was lying in front of the van. I saw the driver’s eyes as I blanked out)

What does safe mean to you? My relationship with others – with friends and family unable to understand, with them driven away by their own pain and guilt about what has happened to me, their inability to balance my need for them to stay, and my driving them away. With you – my beloved professionals watching on from a studious distance, who yearn to ease your own anxiety through isolating, containing, sending me from the public’s nervy gaze.

What does safe mean to you? My relationship with my environment – but look: the cold steel, cold brick, cold circling of eyes, the close observations, the windows, the looming presence of a nurse – how they gathers like vultures. You gave me a patch of green, or art therapy and imagine that a painting will take the place of my future and my dreams?

(I woke in an office. Tea with three sugars. Led back to the ward. They all watched)

I am not taking it any more – you do not understand at all. Tosh.

You cannot know. You cannot ask the questions that will lead you to answers if you do not know what safe means to me. You cannot continue to lie casually, when you do not know the question. Until we have power.

Until we have power to lead the inquiries, to have our own professorships granted to us by our experiences and expertise. Until we lead, and you follow…

Let us lead you by the nose to the field where we cut ourselves open, where we searched for the low or high places, where we listened out for trains the way some listen out for birds. You cannot know with the casuistry of your privilege and your high-flown assumptions.

You cannot know what it looks like to stare down the barrel of loss. I’m not taking it any more. Tosh.

(C) 2020 David Gilbert

 

You Were So Good, So – poems from the psych ward

 

I have been asked to speak at the Mind, State and Society conference next Tuesday. They would like me to provide a flavour of what it was like to go through the psych system in the late 80s and early 90s – an era of huge change in mental health policy and practice.

This was when the Victorian Asylums were closing, Care in the Community began, Prozac was born and Community Mental Health Teams were spawned.

I will intersperse the talk with some of the poems below.

These chart a little of my journey – from an angst-ridden Jewish teen with a mother who had been a kinder-transport refugee, through six haunting years of mental illness. This included a stint in one of the old asylums and then in and out of a psych unit for three years. And then a stumbling recovery…

These poems are from the following publications:
– Liberian Pygmy Hippopotamus (2017, Templar Press)
– Elephants Fragile (2019, Cinnamon Press)
– ReCollections (2019, Bethlem Gallery Publications)
– The Rare Bird Recovery Protocol (published in Spring 2020, by Cinnamon Press)


She Said

That cut will take time to heal
You think too much
Double-bow your laces
Don’t waste food – finish what’s on your plate
Coffee doesn’t taste as good as it smells
Double lock the door when we go out
Lock it at night when we stay in
Pay attention
German is not a nice language
Keep your head down – don’t get involved
Not too much salt on that
Love is not like Hollywood
Try your best, but don’t get your hopes up
Open the window at night to get some fresh air
The doctor may need to take your tonsils out
Heaven is a sensible idea – for some
A quiet life is a good life
No, I’m fine
Rules are there for a reason
I can tell when it will rain
I’ve never believed in a loving God
Imagine every other driver is an idiot
Be back before its dark
Don’t speak too loudly in public places
There’s no point talking about the past
You ask too many questions
Stay away from dogs – particularly Alsatians
Knife and fork together when done


Mental Schmental

Nu? she asks with her usual charm
of my mum, then glancing sideways at me:
mental schmental
we don’t need to talk about things like that
do we? Nothing that a few pills couldn’t help
and anyway
ECT never did me any harm.

The Herrison, 1990

I was driven in by Stuart, the kindly but agitated priest
of the therapeutic community who’d done his best
but understandably had had his fill before evensong
of me saying (again) I would do myself in.

To be fair, he’d enough on his plate, running the place,
along with a farm, lambing time, god knows what else.
I couldn’t imagine how he did it. But then again
I couldn’t imagine getting out of bed. The drive was grim.

I thought of dousing myself at the Esso garage
but have never been more than an amateur dramatist
and got a Snicker instead. The place was mad of course.
I can’t remember how I got to watch The Abyss

with three student nurses over a Chinese take away
or how I managed to concentrate on England v Zaire
where Platt scored on the turn while a thin girl explained
how she’d baked a cake to explode in her mother’s face.

Each morning, I watched Jimmy, the ex-pig farmer,
head bowed, soul burrowed, round and round the field
close to the hedge while the sheep munched mildly
rotating slowly clockwise, keeping an eye out.

The asylum was in the throes of being closed.
They still grew tomatoes though, in vast greenhouses
like hangars. I could have shouted from one end to the other
and nobody hear me. In fact, I did. they didn’t.

Worse, they kept us bottled up, fizzing. As if we’d flatten
eventually with the injections, monumental boredom
and home-grown lettuce, Dorset stretching into the distance,
a sullen but kindly land, too fucking pleasant to be this cursed.

The Jab

I slid between rooms
Severing wires

Unscrewing bulbs
And scissoring magazines

Limbs became heavier
And heavier to operate

I sat cross-legged
Fending off evil

While the bedroom wall
Grew dangerously thin

The black house began
Its whispering plots

My brother was sent
With poisoned Jaffa Cakes

Midnight’s rush
Of telephone calls

wailing and wolf-like
Four men arrived

Serious and muscular
The quiet jab came

And my mother’s voice:
Please look after him

Close Obs

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

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

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

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

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

This Way Then That

On Thursday afternoon at four he stopped
layering slabs of brown on grey on black
and got up to get scissors and masking tape
unrolled a sheet of frosted tracing paper
and hung it over his face to make a veil
then looked out over where there once had been
a vista of roads and homes, park and shops
where far off normal people – smudges, lines
and dots – moved this way then that, while back
at the tables, they watched and waited just like
the others had always done and then the art
therapist asked: “So tell us what you can see?”
Animal shadows? Waves? Or weaving bones?
Fuck off. Smudges. Lines. Dots.

The Ken Porter Ward

I am ‘admitted’
They strip me of my belt
My change. My keys. My smooth
stone the shape of an egg
That Robin gave me.
Suicide tools.

They rock and dribble
Like all the scary pictures
I’ve ever had in my head.
One edges towards me
like an antelope to a water hole
Where are you from?
Your skin is so smooth.
Have you had your medication yet?
I don’t know why I’m here, I say.
Have you ever scored
a treble word score in Scrabble? He replies.

I ‘abscond’ – a word they like –
spend the afternoon by the scuzzy pond
at the end of the path lined with crusty dog shit

A boy of 15 walks around naked
And wants to hug everyone.
He even wants to hug me.
But I won’t let him.
He tries to bite me.
Next morning, he’s gone.
I can’t remember his name.

Every pillow
Every pillow of squeaky nylon
Property of Barnet Psychiatric Unit.
Every sheet
Every thin grey sheet
Every blanket is labelled
Property of Barnet Psychiatric Unit.

Mum reminds me when she visits
– ‘You were so good
at science. So good, so good, so…’

I get a letter from my brother in Japan –
I’ll visit when I can.

My dad takes me for coffee and cakes.
He sighs a lot. I understand
why he sighs. I understand
why people sigh. Why everyone sighs. I dream later
I’m filled with sighs and lift
above High Barnet like The Red Balloon
before being shot down.

They change the policy, lock the doors at eight
Risk management.
I spend the night picking scabs
Later they will become
White constellations
When my arms brown.

She sits one legged
on a wooden chair
tells me how her mum
had not dared come near
so she had wrapped a wire
just above the knee
pulled until it hurt
then pulled some more

My guts wake me
from a dreamless dry mouth sleep.
The night shift are leaving.
They wheel the meds trolley round.
That one wheel that squeaks
and squeaks

I am explaining myself
to myself each night.
I am explaining why
Nobody will hold me. Why
I will not get out.

Mum reminds me – ‘You were so good
at English. So good, so good, so…’

They find Larry face down in the reservoir
He used to cadge cigarettes
Move from bench to bench
I’m not well, he would say
over and over again.

John hunches motionless
in the plastic chair all night.
Robert snores.
Maureen chants all night
N-E-E-R-U-A-M
I work it out eventually.

Nobody brings flowers.

We sit on Larry’s old bench
surrounded by fag ends
overlooking the cemetery
I tell Ellie my story
He offers to go get
his gun from the car

I find a friend and cling.
We watch fireworks break over the car park
from the laundry room.

I hold her hand.
It won’t last say the nurses, say the doctors
says the washing machine.

The custodians drift
in white-jacketed shoals
disappear into the Pink Room
through heavy doors head down
with coffee mugs and syringe.
Later they lead out
the quieted
with eyes milk-mild and sugary
startled by fluorescence
shuffling obediently towards
the trolley of stale digestives
and plastic cups of lukewarm tea.

You were so good, so good, so

The Eel (Recovery)

Beneath the ice
an eel slipped through the murk
mouth bigger than the world.

The man watched and shivered
in the face of what he’d become.
His mind could not respond.

His body had to be coerced
by something other
or be abandoned.

His legs, heavy and traitorous, began
to bisect dreamless streets.
He still looked down

caressing the blade
whispering in his pocket.
His eyes were eventually drawn

by scaffolding and cigarette packets.
By pipework: the earth opening up.
Railway sidings at dawn:

The tenacity of dandelions!
He failed at first to recognise
this emerging appetite.


You Didn’t Tell Me

You didn’t tell me there would be days when I could walk out
on a garden by a low stone wall and breeze from the Baltic.

You didn’t tell me there would be chaffinches in the oak
and gentle hill curving down to the reeds, lake and an empty boat.

You didn’t tell me there would be oars, that I could steer to middle water
overlooked by black and white storks in towering nests.

You didn’t tell me there would be time to pull in the oars,
let drift and swirl, that distant bells could sound like glockenspiels.

You didn’t tell me that shivery and jagged reflections of white trees
could settle themselves into distinct silver parallel lines.

You didn’t tell me that I could return at any time to the jetty,
or that when I stood, a turquoise dragonfly could land on my arm.

The World Is Full of Toilets To Cry In

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

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

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

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

A Letter of Apology
From an inmate of a Victorian Asylum

Sir, it was not so much due to
the loss of those civilising attitudes
or everyday habitual temperaments
upon which you, and your esteemed
fellow professionals attribute,
significant value, or that which
you declaim that I, and all
my brethren in these miserable
whereabouts should possess and
lately, unfortunately, temporarily
one hopes, for reasons that I,
and perhaps we cannot yet
fully explicate, have not.
But for that which you
display when you attend my
personage and inspect my
parts, therein illustrating
evidence of considerable lack
yourself – that is the truth of why
I spat in your face.
Yours,
much damaged, much displaced.

Patient Leadership Could Help Solve Workforce Issues

The Patient and Public Engagement industry has been sidetracked.

For many years, patients, users and carers have been led to believe that their voice matters. And that by taking part in focus groups, telling emotional stories at conferences and being a ‘representative’ they will make a difference and that this translates to being ‘at the centre of the NHS’.

I have long argued that these transactional engagement approaches are outmoded, preserve the status quo and buffer us from power. See for example this article 

At the HSJ Summit on Mental Health, I was reminded of two further things. Firstly, that you need to sell your work as relevant – “if the next government believes in choice rather than rights around mental health, use the argument of choice… you can sell the same thing”. Secondly, speaker after speaker said it was workforce issues that kept them up at night.

So, we need to sell co-production as a workforce issue.

Of course, it is other things too. It improves outcomes and experience. It helps with improvement and transformation. It shifts power (don’t shout too much about that one, sneak it in).

How is co-production a workforce issue?

Well, firstly, there are three embedded models of co-production doing the rounds that I rather like. One of course is our Sussex Model of Patient Partnership, based on a triangular dynamic between the role of a Patient Director (critical I think), pool of Patient/User/Carer Partners involved in improvement and governance and a Patient and Carer Forum with formal oversight for patient experience and engagement work as well as other things.

The second one is outlined in the book, The Patient Revolution. Karen Owen’s chapter on HealthMakers describes a model whereby people who have been self-managing their own condition (of whatever sort) can become peer support workers and then enter the strategic realm should they wish.

Meanwhile, in mental health, the rise of peer support work as an acknowledged paid role (albeit often poorly paid) offers rich opportunities. For example, Central and North West London (CNWL) Foundation Trust is putting in place an integrated approach and thinking through how already embedded peer worker skills can be extended so that people take on other roles (coordinated by Melanie Anne Ball, their Trust-wide Peer Support Lead) (@melanieanneball).

What all these have in common are:

  • Valuing the wisdom and expertise of what we bring – the jewels of wisdom and insight from the caves of suffering
  • Creating new roles and opportunities for people affected by life-changing illness, injury or disability
  • Developing embedded approaches that align with corporate priorities
  • Allowing people affected by IID to more directly assist in improvement work
  • Supporting ‘career’ progression
  • Building capacity and capability alongside development of roles
  • Implicitly changing and transforming the traditional ways of doing engagement work
  • They are applicable across all health settings – mental, community, acute – and across all sorts of local organisations (provider, commissioner) and national level (regulatory, policy-making, NHS England, etc).

Peer support helps deliver services. Patient Partners involved in improvement and governance helps drive change. These two elements need to link up.

I would propose that every health and social care organisation looks at these three models. And with the help of people like us (Lived Experience Practitioners, Experts by Experience, Patient Leaders – call us what you will) develop integrated approaches to co-production.

But here’s the crunch: Workforce shortages and resource pressures mean that co-production could really help.

I am not advocating for cheap peer support to displace roles that should be done by others. I am arguing that at each stage along this new ‘career pathway’, this work can help….

  1. By designing better and more coherent self-management programmes, co-facilitated and driven by Patient Leaders, etc. This would stop attrition rates in professionally designed and driven programmes, and have long-term consequences for well-being.
  2. By having a high quality peer-support workforce (able to offer ‘health coaching’ skills and/or signposting to well-being functions) this obviously helps improve outcomes and experiences.
  3. By developing improvement roles so that patients become, for example QI partners and improvement advisers, we would better target and implement co-designed interventions. They would better focus on what matters.
  4. By having patient leaders in governance roles, there would be enhanced accountability and better quality decision making.
  5. By having a Patient Director role, the work above would be co-ordinated and would actually happen.All this would help improve outcomes and people’s experiences as well as have deeper effects on quality of decisions and delivery. This work helps staff.

Another benefit of true co-production (that I have seen time and time again) is that staff morale lifts and through the presence of patient/user work, staff become re-connected to the passion and values that brought them into the work in the first place. This work rehumanises healthcare. This work helps staff.

Good engagement impacts upon staff engagement and staff well-being. This might have – a hunch, but a strong one – a significant impact on recruitment and retention. This work helps staff.

Bureaucracy and the chasing of frenzied regulatory targets reduces – this is also a hunch at the moment, but I am seeing it happen in a few places – patients in more control of decision making ensures a focus on measuring and working on what matters. We need to reinvigorate the workforce with a cultural transformation that focuses on what matters. This work helps staff.

And if this happens in commissioning and regulation, at policy and practice level, we have a true patient revolution on our hands. This work helps staff. It transforms cultures in ways that all the empty rhetoric at well-meaning conferences fails to do – because the same old tired people are in charge (I mean well, some of them are very good!).

This work helps the chief executive. Our dream of patient leadership turned into everyday practice might allow a chief executive to be released from their nightmares. Remember, they come to work because they care too.

Co-production is a workforce issue.

 

—-

 

© 2019 David Gilbert

 

If you liked this blog, please read more at www.futurepatientblog.com

 

And follow me on Twitter @DavidGilbert43

 

 

 

 

 

 

 

 

From Job-Job to Rock n’Roll-Role – The Sussex Model of Patient Partnership

We have nine paid and supported Patient and Carer Partners (PCP) at Sussex MSK Partnership (Central). This, in addition to bespoke engagement work and gathering and learning from patient experience data.

Yesterday, I spoke to one of the nine: “I was in the waiting room – was I a patient or a patient-partner? I was now thinking about improvements that can be made. I then went with a friend to another hospital where we seemed powerless and told him about the patient and carer partner role… he was fascinated”.

I suggested she write a blog and that this is used to discuss the role at our next meeting. We also talked about her re-using her extraordinary research brain to look into availability of acupuncture in the NHS and locally – partly as a way of developing relationships with our clinicians and partly as a way of gaining system knowledge and thinking through local and national practice.

I suggested to another PCP that she becomes a mentor for a health professional. “That’s turning the tables, isn’t it?” she said. She has been taking part in observations of clinics and assessing the quality of shared decision making, alongside other PCPs and peer-clinician observers.

The project has been so successful, we will probably roll it out into other clinics, and maybe revise the assessment process and measurement tool so as to be more patient-centred. The other day, the lead clinician for the upper limb team, the extraordinary Helen Patten, agreed to patient-centred observations being on a level-playing field to peer-observation for appraisal purposes.

As a result of this project, this particular PCP has struck up a close relationship with the clinician she observed who had found the patient-centred observation uniquely valuable. “Patients as mentors of clinicians as the next step….?” she paused: “Why not?”

Another PCP has been invited by a clinical lead to participate in work on staff inclusion, beginning by looking at experiences of BAME professionals. I am going to ask this PCP whether that experience can be widened to look at patient inclusion. This will expand on last year’s work on accessibility and information provision.

Meanwhile, another PCP is going to help us analyse qualitative data from our patient survey and join a project on improving our appointment letters.

Another more experienced PCP is closely involved in the roll-out of local plans for advanced practitioners to be ‘First Contact Practitioners’ in GP practices. This has taken her deep into plans around work-force and quality assurance. These are issues she is actually more qualified than most to take part in, given her professional background, as well as her personal experiences of care.

Thus, PCPs are beginning to develop their own portfolio of work. This portfolio builds on their ‘frozen assets’ (expertise from a former life before illness) plus the ‘jewels of wisdom’ from the caves of suffering (expertise from patient-hood, including leading with vulnerability, awareness of power and trusts issues, primacy of healing relationships). These are things we discuss in the book ‘The Patient Revolution’.

The PCPs are also developing a set of collective priorities. These are likely to include a closer focus on pain services and physio and a patient-led project on ‘coordination and consistency’ across pathways.

Once these individual and collective priorities are decided upon in early 2020, we will co-design a learning and support programme that focuses on ‘core skills’ (e.g. bridging personal experience for strategic gain; communication and relational skills) and ‘context-specific’ skills (e.g. how to move from being an ‘improvement partner’ to ‘governance committee role’).

The vision is for PCPs to develop a ‘career-pathway’ – from judicious use of own experience narratives (i.e. in learning and education) through being ‘improvement partner’ through to ‘governance advisor’. NB. We now have PCPs on two MDTs (upper-limb and lower-limb) and will expand that to four MDTs (pain, physio) in 2020.

Of course, this ‘pathway’ can go the reverse-route, and encompass other roles, such as on recruitment panels, undertaking research, being a mentor or moving into peer-support. 

The benefits of our work are becoming visible – our recent CQC ‘outstanding’ report included specific praise for our model of Patient Partnership. More importantly, we have seen changes in policy and practice, improved self-management programmes, changes to shared decision making approaches, improved access to clinics, better user experiences in waiting rooms, etc etc.

But the most satisfying thing for me is, I do not need to sell the work. Staff are coming to us. That shows how far we have come.

Last week, one of our PCPs hosted a celebration event for the CQC ‘outstanding’ assessment. Next week, two of them will meet with Simon Stevens in order to demonstrate that social enterprises should stay included on procurement frameworks.

But aside from the posh stuff, three PCPs will be expert panellists at a phsyio learning day – the keynote morning presentation in front of about 100 local practitioners and admin staff.

As one of our newer recruits to the role of PCP said: “I am not used to being encouraged to delve into my experiences of having a long-term condition in a positive way and people wanting me bring that to the table. I am slowly coming to terms with the fact this is not a job-job, in the sense that I have X hours a week to do Y. That we can influence things and find ways to match our passions with the needs of the organisation. And vice-versa.”

It’s not a job-job. It’s a ‘rock and roll-role’.

© 2019 David Gilbert

If you liked this blog, you can find others at www.futurepatientblog.com

The Patient Revolution – how we can heal healthcare’ is published by Jessica Kingsley Publishers.

 

 

 

The Necessary Twilight

I am starting to write a book that will include my psychiatric experiences in the early nineties, a time that also heralded vast change in mental health policy and practice. The book will interweave the personal and the political, and will consist of prose and poetry fragments.

This is my first attempt at writing a fragment.

I would welcome any feedback.

Please be warned. This is not easy reading.

—-

I went to bed as early as I could, sometimes before the night shift at eight arrived. Each time I knew that rest would not come. That to go to bed early would make things worse, the nights more interminable. That to lie awake in a psych ward with the shouts, the groans, the eerie laughter, the sounds of eternal strangers would always be an unaccustomed hell.

But each night, for weeks and months, I tried to go to bed early. As if one part of my brain could not cope with the realisation that another would continue the torment into the necessary twilight.

The three inch mattress would slump and make my bad back worse. But I did not care about my back. I slipped between the squeaky nylon sheets without having brushed my teeth. I did not care about my teeth. I would not care for my teeth, my hair, my stomach, for another three years. I would swell up to 14 stone with side-effects of this, that or the other.

And I would lie with my head on a pillow embossed with ‘Property of The Barnet Psychiatric Unit’. The back of my head burning with the imprint of those letters. One day, there would be an internal tattoo.

My mum had brought me in an easy-read book, “Oh, I am sure you’ll enjoy this one, she is such a good writer and uses pretty simple words too”. My mum, battered by the years of her son being gone from her, had brought me a Rosamund Pilcher novel that she had enjoyed. Easy fare. She had seen my descent from being able to devour Solzhenitsyn to not being able to read The Beano. That night I tried, I promise mum, I tried. Every night, I tried.

I picked it up. “She met….” I read aloud.

My brain would not engage with what was on the page, my eyes would not rest with the words, they would tear away to an inner place of hell and dwell there, before triggering my brain to remember that I was still on a psychiatric ward, and even were I to accept one word into the empty space that lay beyond my fizzing neurology, that word, or those words would only cement a recognition that I was a failure – once able to read Solzhenitsyn. Once able.

“She met…” I read aloud. My loops. My god, my nerve-racked rhythm of disconsolate abstracted pain.

After about thirty seconds of dutiful attempts (I tried mum, I tried), I threw the book at the wall. I had not got beyond the first paragraph. And the entirety of that paragraph had been forgotten. If my eyes had taken words in at all.

“She met…” I screamed. Romance, sentiment, beauty. I neither belonged there, or this gated hell. And beyond that: Words. Reading. Writing. The only thing I had ever loved – the only thing I ever wanted to be, a writer, beyond purpose and my focus. Like the twist of thousands of starlings in the dusk.

The nurse Siobhan appeared, as if she had been wired to my efforts. “Your mum told me about all the things you used to do before you were ill”. Here was another staff attempt to boost my soul, as if a soul was a balloon simply to be pumped up for the abandoned party: “Such a waste, you here, when the world needs you”.

Kind words were the worst kind of words. Encouragement the worst kind of support. Optimism the very worst of the well-intentioned efforts of the normals. Hope not far behind. Comparison lies at the heart of all such bereaved sentences. Then and now. You and them. This and that. Here and far away.

I told her to fuck off. I wanted her to rescue me. To love me. Fuck off.

I would forgive her now. I would forgive her and her training and her qualifications. No amount of that would have helped. I would forgive her if I knew how. We were both locked into what we knew. Stay with me. Fuck off. Nothing is enough. Give me. Give. Please. Fuck off. You have no idea. No. Idea. Stay.

And the terrible and unforgiving night lay ahead. She retreated behind the brown double doors, and I saw her shadow retreat down the corridor.

I got out of bed, picked up Rosamund Pilcher, threw it into the bin. Fuck off mum, I thought. How dare you wipe my nose in my impossibilities, how dare you make me throw up emotionally on your pages. And what of easy romance, what of easy fare? There was to be no easy fare.

My mind picked up the pace. Kill yourself, don’t, kill yourself, don’t, kill yourself. Into the mind-fucked extinguishing emptiness. I slipped back into bed. I had killed four and a half minutes of my life. Now I lay, looking up at the neon strip lights against the vast slabs of ceiling. How many nights did I look up at that ceiling? The one mercy is that I have forgotten many of them.

But even remembering one is enough to make me fear the bad dreams I will have tonight for remembering this at all.

 

—-

(c) 2019 David Gilbert

 

 

The Patient Will See You Now – Small steps towards valuing yourself

The stories we tell ourselves, particularly those about ourselves can become fixed. Often almost invisible and deeply held. Only surfaced when we react to something that triggers them.

I have always under-valued myself. And notice a queasiness when others seem not to value me, or when I see others under-valuing themselves. No wonder I am in the patient leadership business.

But we have to rewrite those scripts. That starts by noticing how we play along – when we withdraw (fester and sulk). Or turn aggressive.

After becoming a Patient Director and writing a book, some things have changed. I am more assured about what I have to say. And people say nice things, which is, er, nice. You would have thought I have stopped listening to the insecure bits of me – fat chance! That is a lifelong struggle.

But…

Yesterday, I was doing an evaluation and for the third time, the person who I wanted to speak to did not answer the phone. He had given no advance warning again, and offered no apology. Then I got a text this morning, saying he could speak this morning. I checked with others as to how to respond and said no. I asked him to write his responses down and send them to me. I said to myself that my time was as valuable (even as a ‘lowly’ evaluator) as his.

This morning, I was on the phone to an international patient leader who totally understood my need to value myself. We got on famously and agreed that, if she was to pick my brains further, she would not want to suck them for free – she knew what that was like. She may bring back some money and resources, she may not. But it sometimes seems that only fellow patient leaders get this need to be valued properly.

This afternoon, after waiting to meet a ‘quite important person’ and having finally got the slot into my diary, she emailed and said sorry because she was meeting another big wig and this had to before xmas. I summoned up the courage to write an email back and say, in effect, ‘hey, I am important too’.

This time because it was a health professional, it reminded me of doctors not having time to ‘fit me in’. It also reminded me perhaps of another story I hold – that we patient leaders are not as important as ‘professional leaders’. Of course, my story may not be ‘true’, but it feels so. The best I can do not to collude with telling myself the old story is to stop being an actor within it. That is why I wrote back.

Meanwhile, back at Sussex in the (part-time) day job, our amazing Patient Partners are rolling their sleeves up a bit too. One of our gang has summoned up the courage to remind the local power-brokers beyond our service that she is astute in things beyond her ‘patienthood’ and is now entering some in-depth conversations in the STP arena around quality assurance and competency frameworks, stuff she knows more about than them.

These are small moments, but I have taken the time to process them (also critical in the non-stop world we live in). They remind me of my recovery many years ago from being in the depths – that it is small behavioural steps that slowly shift our self-thoughts. Thinking and feeling lag behind behaviours. It is uncomfortable to break old habits.

I am waiting for the reply to my email with trepidation – also a habit of mind. So, let us reframe that too – I am waiting with hope of a good outcome. And trusting that the doctor will recognise the courage it took to make that honest challenge.

Good luck with it. Be gentle with yourself, but a tiny bit tougher with others.

p.s. The response to my email to the doc has come back – she has been refreshingly honest too. No change of mind, but a transparent response. And she says she admires me for my truth-telling. Adult-adult. Respect!

 

© 2019 David Gilbert

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

 

 

 

 

 

 

 

 

 

 

 

 

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