All posts by davidngilbert

About davidngilbert

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

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

This is a short version of a blog I wrote two years ago. I hope it is still useful.

The summer was scary. Symptoms I thought buried, returned. A NHS Director who had relapsed to patient-hood! Previously, I had lied on my CV about mental health problems.  Disclosure had been an impossibility earlier in my career. But now, I did not want to. I had a duty to be authentic. But it was still hard.

When you get back on your feet, they are wobbly. You are a foal. You are easily triggered and thoughts that you are weak and a failure rumble on, like fading thunder.

When I got back, I was bowled over by affection. One friend who’d been away with a physical problem asked: ‘Did you get a card from the office?’. I said, yes. ‘And weren’t those messages from everybody amazing’? She went on. ‘What messages?’ I said.

Then I realised that the organisation, rightly in terms of confidentiality, had not disclosed my illness to others. I had not had the chance for a conversation with my boss or HR to let them know they could tell others. So, I got a card with one signature and a message ‘with love and support from all your friends’. I had been further isolated through good intention. Disconnection made my return more uncertain.

Then there were a few who gently touched me on the arm and asked ‘are you OK’? That touch seemed to convey a mixture of concern, love, kindness. But also uncertainty – not about how I was – but about how to open up a conversation about my mental wellbeing. Their vulnerability created a human connection.

To me, it said ‘I am here for you, happy to listen, to be open, but I am unsure how much you want to share’. We needed a way of holding a safe conversation.

One said ‘I don’t want to treat you with kid gloves, or patronise you’. We talked about how to have that difficult conversation. She asked me to tell her if I was upset or triggered by what she asked me to do. But it was up to me to do so. She would not hang around eyeing me with concern. We agreed that would make things more awkward for both of us.

But what of younger staff? Several sidled up to me to talk about their own vulnerability – how they could not risk their career due to ongoing stigma and having a ‘blot’ on their CV. In this age of ‘time to talk’, maybe only the Prince Harrys, Stephen Frys and Ruby Waxes can afford to be open and not risk everything.

Those who can be open, should stop exhorting people to be like them. We should shut our mouths and open our ears. It is easy for people like me to write blogs. Better to be there if, and, when others feel ready. That touch on the arm showed me how it can be done.

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My Uncle’s Collection of Tortoises – a small gathering of recent poems

I gathered a few recent poems together. I hope you like them. They will appear in my forthcoming full collection ‘My Uncle’s Collection of Tortoises’ by Cinnamon Press in 2020.


 

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.

 


 

Why I Left The Island

I left the island because of the wind
that flung across the dunes year after year
unsettling sand that scoured my skin
partially burying the blue-doored cabins.

I would traipse the beach for hours
echoing its shore, eyes gritted, eliciting tears.
I became flat like the island
days settling themselves beneath my ribs

in the soft place that folds away loneliness.
And when I left, they sang enchantments
against what I would become
and lit a necklace of fires along the hills.

Even now they say: I remember him
on a blue bike by a billowing field. Surely
he was happy then. I am beginning
to understand where I am happiest.

Each night patiently, grass at the window
tries to explain. The flame grows easier
to love, the wind stirring the streets
reminding me why I deserved to leave.

 


 

In The Portuguese Synagogue

In the Portuguese Synagogue in Amsterdam
the oldest in Europe, they still lay down
fine sand to absorb dirt and the sound of footsteps.

I learn that a chuppah can be made of anything
that a wedding under its cover can take place
anywhere, but preferably beneath an open sky,

that the glass broken during a marriage ceremony
can be of any kind and is a symbol of fragility,
that the boxes of those who perished in the war

stayed locked until they began to age and decay.
Then they opened them to find ants devouring
the prayer books, yarmulkas and phylacteries.

Across the cobbled courtyard, a small winter shul
is covered in a deep red carpet embroidered
with a wide-eyed phoenix rising from the ashes.

Here, time has set love free – common, repeatedly
trampled upon, hidden, lost, burned, eaten,
virtually extinguished, yet recoverable.

 


 

Low Star

Last night, we dropped off our son
then bought a Chinese takeaway
and watched a documentary
about the ends of the universe.

We laughed at how many times
Brian Cox smiled when mentioning death.
All is growing apart. How small
we become as white dwarves

random entities within the fatigue of entropy
shifting frequencies beyond thought
of our own unimaginable ghosts.
This morning, I find the requisite light

and am warmed by our low star.
The nuthatches hang like commas
in the sentencing, before arrowing
like time to a nearby branch.


 

Water Carrier

a child reaching out for the rain
collecting droplets in his cupped palms

will serve as my reservoir
this drawn-out afternoon

and when blackbirds regale the dusk
will be my evening water carrier

 


 

The Instruments

I met a girl once
and we spent hours in the maritime museum
trying to understand everything

about the instruments
that kept the vessels on-course and water-tight.
There was so much to learn.

One evening I came home
and banged my head repeatedly against the wall.
She had told me the reasons

we couldn’t go out anymore.
I guess you have to know enough to get by.
Too much and you’re ruptured.

 


 

The Underground River

We are walking. We are always out there walking.
As if walking this way and that down unknown roads
with the windows of strangers casting dull light
on our disillusionment will melt or disentangle
the many disappointments of daylight and as if
the turns we take – sorrowful, immediate, fanciful –
might act like dumb, arduous poetry – might become
more true and beautiful than history or mathematics.
We are beginning. We are only just beginning to tell
of the innumerable troubles we’ve rediscovered, shy
like wrens, brown and gradually disassembling
removing our sweaty gloves, unbuttoning jackets,
holding hands across the truth of our difficult lives,
a sense in which the hard earth can shift beneath
our stomping feet, dry-beds softening, moisture
eking through forgotten runnels, some deep found
rhythm in the underground river’s runaway song.

 


 

Octopus No. 11

I am Octopus No 11.
Tanked. Part of The Experiment. Intrepid.
I wait. With absolute acuity.

I watch. One behind my observation glass
take a break for thirty seconds longer
than the other (a short biped with a limp).

I am up and over the edge, across
the bench – this irrelevant division
between our cephalopod brethren.

Then wait once more in my new tank. I like
to watch those eyes dilate when they return:
The Incredulity of the ‘Superior Race’.

 


 

Belief (The Old Christmas Tree)
For Jan

I believe Barnet Local Authority
when they say they will collect it in January
(if we have cut it in half).

We do not have a saw
so I made do with secateurs
lopping off its top – where angels perch –

clipping and tearing at each stubborn branch
stacking them – my own lattice work –
feathery in the deep dark bin.

The cat tried to work it out
pawing at the branches
sniffing at fallen needles camouflaged in the grass.

The tree that means so much
is now no more than a big stick.
And for the third Friday in a row

I led its scrawny body up the garden path
and let it lean against the low wall.
And for the third Sunday in a row

I haul it back down
and could easily get cross.
But you have to laugh. After all

I am a Jew and should have known.
Tomorrow, it’s the dump.

 


 

Constellation

Sometimes almost without you noticing
a constellation may appear –
the cousin who phones from America

the difficult conversation that doesn’t
explode into an argument but reveals
kindly what you should have acted upon

a pair of goldfinches eyeing the seeds
an evening more quietly attended to
the unnecessary left undone –

patterns dimly recognisable only
the next morning having dreamt of a puppy
freed from the car boot and safely returned

to its owner – a wild-haired laughing stranger
who then invites you in to meet his friends

 


 

Terry

Blackpool may be grim. Spiceheads sculpt themselves
in doorways along Dickson Street while pit bulls sleep.
A fat woman throws her fag end to the ground
clambering with a groan from her mobility bike
and reaches for the door pad to the DWP.

A teen with aubergine hair pushes a pram
behind a pale wiry boy with concave cheeks
and a tannoy blasts from the sea front theatre
announcing cabaret season, while gulls descend
on tangerine bin bigs spilling KFC.

Terry tells me how he was raped at ten
dropped out of school, got hooked on amphetamines
then crack then heroin. Now, when he goes for a job
the DBS checks fuck me up. One mistake
more than twenty-five fucking years ago.

The system is a cunt. He is beginning again.
Putting himself about, mending locks for mates
and can go a few hours now without the shakes
is even thinking about kids. He smiles at last.
His girlfriend holds his hand. Is proud of him.

 


 

May Never Get

At the end of the day, being no more
or less miraculous than a tulip

shopping becomes difficult. I am stopped
by a wagtail that flits between the traffic

a cluster of redwings on the stubble
the florist steeped in roses and balloons

with silver lettering lit by the sun
crocuses, snowdrops and daffs bringing us

back to all that we were born to witness
while two women, arm-in-arm, laughing, turn

to look at a man in grimy blue overalls
smoking a cigarette, showering a jag

and a rainbow rises over the car wash.
I may never get to Sainsbury’s.

 


 

My Uncle’s Collection of Tortoises

I began to collect elephants
because he had collected tortoises.

They both seem old and wise.
My elephants remind me of his tortoises.

He passed me down a small jade tortoise
that sits next to a soapstone elephant

on our bedroom bookshelf.
I remember two huge tortoises

guarding the back door
of my grandfather’s house in Herzliya.

Me and my brother would sit on them
when we came back from the beach.

I had learned to swim.
We ate corn on the cob.

He taught me the latin name for the hoopoe
Upupa epops which made me laugh

(still does) while I rode into the night
on my uncle’s giant tortoise.

 


 

All poems (c) 2019 David Gilbert

David has three pamphlets published. Liberian Pygymy Hippopotamus (Templar), Elephants Fragile (Cinnamon), ReCollections a collaboration with Beth Hopkins, artist (Bethlem Gallery). He is Writer in Residence at The Bethlem Gallery and his forthcoming full collection ‘My Uncle’s Collection of Tortoises’ will be published by Cinnamon in 2020.

The Ten Year Backward Plan – a clear commitment to continued gobbledygook

I was going to avoid Twitter and blogs for a while. But this is too important. I’m also recovering from a gut bug, and should be resting… hey-ho.

If you’re looking for signs that the ten year forward plan will foster patient leadership, co-production or meaningful engagement with patients/users, carers, communities or citizens, then, er, don’t.

Gone is any pretence at ‘harnessing the community’s resources’ or any remaining pledge to work with patients and the public as equal partners in decision making – whether in improvement work, governance at local level (for example in integrated care organisations) or at policy level, let alone in the workings of the (allegedly non-merging) NHS Improvement/NHS England.

Power in the system remains entrenched in the hands of the professional elite – clinical, managerial and policy makers.

Empowering People (ho-ho)

A small section on ‘empowering people’ is focused solely on individual patients/carers gaining access to digital and online tools, like apps to manage their conditions, or accessing their own records (something that was to have been done years ago) or making sure (ho-ho) that there will be interoperability of shared records to ensure integration for people with long-term conditions.

And there I was thinking we had shifted a little in our perceptions that patients can be leaders – that the five new Patient Director-like posts in the NHS and the emergence of hundreds of patients/user leaders working as entrepreneurs, strategic advisers and the like might have created a ripple in the institutional pond of arrogance that besets a NHS that thinks culture change happens through resilience training and reshuffling the deck chairs at a structural level.

A section on leadership and talent management shows we are still a million miles from a mindset that acknowledges patient leadership or any sort of co-production in improvement, governance and policy work. “Great quality care needs great leadership at all levels. Evidence shows that the quality of care and organisational performance are directly affected by the quality of leadership and the improvement cultures leaders create”. Er, yes. Hello? Patients here? We can help?

But no: There will be a new ‘NHS Leadership Code’ that “will set out the cultural values and leadership behaviours of the NHS and will be used to underpin everything from our recruitment practices to development programmes”. Ah, some values and principles for existing system leaders (that’s not us by the way). That should do it.

Meanwhile: “We will also do more to nurture the next generation of leaders by more systematically identifying, developing and supporting those with the capability and ambition to reach the most senior levels of the service”. Will this include patient and carer leaders? Don’t hold your breath.

But the NHS just loves its volunteers (but not enough to provide some sort of opportunities, skills and career ladder). Here’s a commitment: “We will encourage NHS organisations to give greater access for younger volunteers through programmes such as #iWill and an increased focus on programmes in deprived areas, and for those with mental health issues, learning disabilities and autism. And we will back the Helpforce programme with at least £2.3 million of NHS England funding to scale successful volunteering programmes across the country, part of our work to double the number of NHS volunteers over the next three years”. Hmmm.

Might there be a mention of building on the amazing community development work or peer support in the section on ‘Improving population health’? No, it’s all focus on the integrated care services (please don’t mention STPs, ACOs, etc – that’s old hat). These amazing integrated organisations will “shine a light” (bless) on health inequalities.

Collaboration (but not with us)

The plan makes a values-based and meaningless plea for more collaboration at national level (this is where the plan is a bit surreal – the authors, based in NHS England presumably talking to themselves) – but it is collaboration between the same old elites who have got us into the problems we have in the first place. “As local health systems work more closely together, the same needs to happen at national level. NHS England and NHS Improvement will implement a new shared operating model designed to support delivery of the Long Term Plan” Ah, an ‘operating model’ whatever that means.

And at local level, there is a clear commitment to continued gobbledygook: “As ICSs take hold, we will support organisations to take on greater collaborative responsibility. There will be a clear expectation that strong, successful organisations not only provide high-quality care and financial stewardship from an institutional perspective, but also take on responsibility, with system providers, for wider objectives in relation to the use of NHS resources and population health. This will mean that neither trusts nor CCGs will pursue actions which, whilst potentially improving their institutional financial position, would result in a worse position for the system overall. This will be supported by a system oversight approach which reviews organisational and system objectives alongside the performance of individual organisations, whereby our regions seek to understand the drivers of challenges facing organisations and ensure that solutions reflect the wider system changes required”.

That’s all clear then, isn’t it? Who writes this tosh?

But of course we will be “deeply interconnected, leaders in all parts of the NHS will be encouraged to support one another across and beyond their organisations. This will be especially the case for thriving, successful organisations which will increasingly be asked to support their neighbours develop capabilities and build resilience. This will form part of a ‘duty to collaborate’ for providers and clinical commissioning groups alike.” But don’t expect collaboration or true partnership to be a focal point. There is nothing here about duties to plan and make decisions with partners outside the golden glow of the professional elite.

The Most Paternalistic NHS Plan Ever

In short, this is the most paternalistic, system-centric, professionally dominated NHS plan I have seen in my entire 30 year working life. It fails even the most basic tests.

It ends with a sop – a thank you to all the thousands of patients and the public ‘engaged’ and ‘listened to’ in developing the plan (no evidence produced for this claim) and a climactic page 115 (if you’re not asleep by then) announcing the launch of an NHS Assembly in early 2019 (p.s. what happened to the £2million pound a year NHS England Citizens Assembly?).

This will bring together “a range of organisations and individuals at regular intervals, to advise the boards of NHS England and NHS Improvement as part of the ‘guiding coalition’ to implement this Long Term Plan”. That’s clear on purpose and scope then.

I am not equipped to give a view of much of the content of the plan, though I am with Andy Cowper, from the HSJ who aimed a distinct ‘meh’ at the likelihood of this plan being much better than previous ones.

I am however well-equipped to have a say on patient and public engagement, co-production and leadership. And, I am honestly appalled at this paper. Angry.

Not only does it fail to build any systemic case for more influence and partnership with patients/users, carers, communities and citizens; not only does it fail to build on the Five Year Forward View’s arguments for working with communities; not only does it fail to weave in any commitment to a true change in culture through real collaboration…

It takes a step back in time. It is almost as if all our work to build co-production, patient and public engagement, patient leadership and new roles in healthcare are simply ignored. It is an insult added to the long term injury of lack of voice.

Whoever wrote this – whoever ‘leads’ this piece of work – should be ashamed. They won’t be. We have to make them so. Onwards and upwards.

By the way, if you want to glimpse the future of true ‘patient-led’ healthcare, have a read of this: https://www.ncbi.nlm.nih.gov/m/pubmed/30153874/
© 2018 David Gilbert

ReWrite – Creative Approaches to Engagement

This blog is unashamed marketing. I want to do more work in mental health and writing – my two passions. So I’ve put them together and….

If you want meaningful, effective engagement with patients and the public, why not try a more creative approach? ReWrite uses creative writing to improve dialogue between staff and users/patients and helps aid recovery for people who experience emotional distress or mental health problems.

We at InHealth Associates have thirty years of experience in Patient and Public Involvement and now offer an exciting new approach. As a poet and writer, I am bringing my expertise in engagement together with a creative approach to deliver two sorts of ReWrite workshops:
• ReWrite for dialogue
• ReWrite for recovery

I am looking for organisations to fund the following workshops.

ReWrite For Dialogue ©

ReWrite For Dialogue workshops bring together health professionals (clinical and support staff) with service users and their carers, to creatively share insights and learning about health service delivery and research.

By bringing people together in safe spaces, we are able to to nurture reflective dialogue and caring relationships between health service users and staff through poetry and spoken word, with a view to promoting inclusive partnerships.

This creative approach enables unique insight into ourselves, others and our collective wellbeing, giving a voice to those who often feel that they are not heard.

ReWrite For Recovery ©

ReWrite For Recovery is an opportunity for those who have been affected by life-changing illness, injury or disability to ‘re-write’ their own story. To reframe what has happened to them and to tell a different, perhaps more empowering narrative through creative writing.

About the workshops

These workshops focus on all forms of words – spoken and written, prose, poetry and lyrics, whatever inspires!

We have worked with mental health staff and users, patients and staff across other conditions (and, soon with people who have been homeless and offenders). Our themes are chosen carefully with clients and topics have included: ‘safety’; what does being safe, or unsafe, mean to you? and ‘healing relationships’.

All our workshops include:

• Examples and readings of poetry, prose and/or spoken word
• Discussions and reflections
• Having a go: producing your own poetry or prose
• Sharing and celebration
• Tips on sustaining your practice
• Resources and further support

Who can participate?

• Health service users and carers
• Anyone who has a professional role in health service delivery or health-related research including clinical, research, managerial, support and administrative staff
• Those with a professional or service user interest in health and research
• In ReWrite For Dialogue, we try to ensure an equal mix of service users and staff at the workshop.

What will you get out of it?

• A safe space for conversations on all sorts of important healthcare issues
• Creative insights and different angles on how to improve services – problems reframed and a wider menu of potential solutions
• Staff and users/patients coming together to better understand each other – healing and trusting relationships
• Improved confidence of users/patients and heightened morale amongst staff
• In ReWrite for Recovery, people view their own lives differently so as to lay the foundations for well-being and getting back to reclaiming their own life
• Last but not least, an enhanced love for language and the written and spoken word

The final word goes to someone who participated in a recent workshop:

Can I say how much I enjoyed the day. It was truly revelatory. I can’t believe that I actually wrote something in such a short time. You definitely sparked something in me. I’ve told countless people about the exercise and everyone would like to have a go! There’s obviously a big market out there for this type of experience”.

Get in touch? Email: davidgilbert43@yahoo.co.uk or @DavidGilbert43 on Twitter.

(c) 2018 David Gilbert

 

The Weakness In Me (is no weakness at all) – a message for World Mental Health Day

I am no big fan of mental health awareness days (see: https://tinyurl.com/y8jalvzg). The ‘awareness industry’ should be more about ‘understanding’ what people go through in terms of sense of pain, choice, control and meaning (see: https://tinyurl.com/y7mk3bvt).

We need to understand why people still feel shame and stigma about ‘coming out’. Without an understanding of this, no amount of celebrity exhortation and spouting of the ‘one in four’ mantra will help. I have written about how this manifests when it comes to the world of work (see: https://tinyurl.com/y9d8nk3f).

The pivot upon which all else turns is this: That to be mentally ill, or to have mental health problems, is to be seen as fundamentally weak.

However, we dress up the language of emotional suffering or distress, we are deemed weak. Explicitly or implicitly. Pain in the brain is equated to weakness. This is the crucial disparity with physical health problems.

The word ‘weak’ has its own resonance. Weak in life. Weak in work. Weak in the head.

Some have extolled the virtues of ‘vulnerability’, thus reframing the notion of weakness (see: https://tinyurl.com/oc4brbl). I want to tackle this in a different way, by saying very simply:

1. It is not weak to get pain in the head and painful thoughts, feelings and emotions – it is the result of an overload of life. Those of us who are sensitive, curious, passionate, idealistic, etc may be more aware and attuned to the complexities of life. Some will be overwhelmed by excessive stimulus. And will be too open to an unjust world. Some are too poor, too weary, too burdened by humanity that they will crack along their fault lines. This is not weakness. Why is it deemed so?

2. It is not weak to live with pain in the head and painful thoughts, feelings and emotions – it takes courage simply to stay alive sometimes. It takes enormous strength to get out of bed often, to take one step after another when your brain is crying out for sanctuary. It can take more effort than climbing Everest to get out of your door. If you have made it this far, you are, in my book, an unsung hero. Shame they don’t do medals for us. This goes on for day after day after year after year sometimes. Crushing. This is not weakness. Why is it deemed so?

As one of my best friends, Michael Fox, once said to me: ‘David, you are stronger than you think. But not in the way you think you should be’.

3. It is not weak to be a leader with mental health problems – as well as the qualities one learns from living with intense suffering (itself a form of resilience that nobody understands unless they have been through it), you learn what it is like to be truly human. To live with vulnerability, to acknowledge people as they are with all their faults, all their inconsistencies, all their incredible warts n’all. And you can become inherently kind – this needs work of course, but the seeds are there in the wisdom and insight you gain into your own being. This is not weakness. Why is it deemed so?

I have written extensively about people who have been through stuff. How they know about stuff and can change stuff – people who have been affected by life-changing illness, injury or disability, bring jewels of wisdom and insight from the caves of suffering (see: https://tinyurl.com/yaqb5m2f).

Yes, people need support. Yes, definitely there is the justifiable fear of stigma and shame. And in the current climate, it is incredibly courageous, and bloody lonely to ‘come out’. Yes people are in pain. Yes this suffering feels like weakness at times. But it is not.

I am attending a reception at the Global Ministerial Summit on Wednesday. If I have the guts, I am going to ask political leaders to put their hand up if they have had mental health problems. If they do, I am going to applaud them. And to those who feel unable to – including those senior political and professional leaders who read this – I want you to think deeply about why not and I say:

Until you do so, things will never change. Repeat: The weakness in me is no weakness at all.

The Stolen Pen – The resonance of anti-Semitism

My mother was nine years old when she arrived in England as a kinder-transport refugee. Her father had been forced by Nazis to paint the Yellow Star and words ‘juif’ on the pavement outside his shop in the Viennese suburbs. Then scrub it off. Then paint it again.

My mum’s parents just made it out of Vienna a few months later, but many of her relatives were murdered by the Nazis. She spoke no English and never spoke about the holocaust. My granny later suffered dementia, retreated to speaking German, and died in Friern Barnet.

My mother’s silence was a pall over our lives. My next book of poetry will be devoted to ‘mining the silence’. She was resilient but anxious and, being a sensitive child, I picked up that suppressed emotion. And suppressed my own when my parents divorced. in later years, I had a breakdown and still suffer terrible bouts of chronic repetitive thoughts and anxiety at times of major stress in my life. Some of this, I am sure, is due to the resonance of history I must have felt in the family home.

We used to go to my father’s parents for seder on Friday nights. My great great great grandfather was Samson Rafael Hirsch, the founder of neo-Orthodox Judaism in the second half of the 19th Century who promoted a practical and ethical following of the Torah against what he saw as the splintering of Judaism through the reform movement and assimilation.

My grandfather had come to England in 1913 before the first world war. His family changed its name from Guggenheimer to Gilbert as the former was too Germanic. Assimilation has always been one tactic of the Jew. But invisibility carries its own risks.

Grandpa Joe was the kindest person I have ever met. He founded the Hillel movement and on student campuses, there are ‘Gilbert Houses’ for Jewish students. My great uncle was a communist. My great aunts were leftist zionists. My grandfather and grandmother proud and spirited supporters of the new Jewish state. They all saw Israel as the necessary homeland after six million of their brethren had been wiped out. And they believed in a socialist state. I have cousins in Israel who would vehemently oppose my political views now.

My uncle was an educated gay cosmopolitan Jew who worked throughout his life for the cause of better Arab-Israeli relations. He played a central role in helping the Falasha Jews move to Israel in the early 80s. And set up many vocational endeavours that spanned Arab-Israeli boundaries. He worked to help liberate young women from the Haredi orthodox sect and set up the Jewish Aids Trust. His partner, a Swiss non-Jew, an abstract artist worked for the International Red Cross. My lovely uncle Robin was best friends with Rabbi Lionel Blue, who made a speech at my wedding – talk about people who tried for peace!

(As I write this, a robin comes to feed off tea cake crumbs on my plate in the garden! The notion of Jews feeding off crumbs comes into my mind).

Being a Jew

Being a Jew is not simple. They say ‘two Jews, three arguments’. I have mixed feelings about Israel, to say the least. And about being Jewish.

Politically, I am a soft-lefty. I liked what Tony Blair did, until the war in Iraq. I was a Labour Party member and have always voted for Labour.

Internationally, I have grown to dislike what the Israeli government has done, and is doing to Palestinians and see the injustice. I am ambivalent and torn about the cause of zionism. On the one hand, I bow to its necessity at that historical juncture. And yet I weep sometimes for what it has become.

But I hear too much from the left and from pro-Palestinian leftists (themselves seemingly unaware of how they are being ‘played’ by wider forces) about ‘destruction’ of the State of Israel.

And I have come to dislike Jeremy Corbyn for his continued inability to tackle anti-semitism, at least as much as for his collusion in Brexit (IMO). Yes, I know the right wing forces control the media. Yes, I know the Israeli government are stoking some of this. I am not a fool. But you have to understand the resonance of the current discourse for people like me who have known of ‘denial’.

We have also heard those words ‘destruction’ before. How do you think that sounds to the son of my mother. Where do people want Jews to go after ‘the destruction’ of Israel? Or do they want Israelis to be destroyed too?

We tried to assimilate and we got wiped out. We set up a State that has gone in the wrong direction, and extremists want to wipe that out too. Nu?

This is not simple for me, and I am trying to work out what a Jew who has married out, who has two sons does with his Jewish heritage.

What I do know

What I do know is that I did not ever think that I would witness the rise of the far right. Or of the far left in this country. And their virulent intolerance – of Muslims and of Jews respectively. Both far right and far left have hatred running through their veins. And lets not even talk of Trump and the forces of Brexit. Remember, ‘first they came for the Socialists…’

Oh how I wish Jews and Muslims could come together at this moment to realise their common experiences. We are being played by wider forces. And both religions have peace running through their veins. More in common than that which separates us. I am agnostic, but feel that the true spirituality and humanity that breathes like a wind through true Jews, Muslims and Christians, despite what human institutions have done to us, is a force for good.

But let’s come back to earth. And psychology. I write this not primarily to make any particular political point. Am no historian or political writer.

The Stolen Pen

I write more of a fear that rises in me – to describe the resonance I feel when non-Jews try to articulate what being anti-Semitic is and is not. And how, to me, that sounds perilously close to denial. A closing down to another’s experience. An ‘othering’ that resonates for Jews who are only, at most, one degree of separation from the six million who died.

I have never, as a white, tried to describe what anti-black racism is or is not. I have never challenged a black person when they say they feel discriminated against.

I have never, as a man, tried to describe what feminism is, or is not. I have never challenged a woman when they say they feel discriminated against.

Anti-semitism is one of the oldest forms of persecution – the idea of the invisible enemy within is a trope of both the left and right. But I thought the left in the UK – where tolerance has usually reigned – knew better. There is a better leftist to be revealed than that currently on display. And it comes as a shock, but no surprise that many on the far right have come to support what Corbyn has said in recent days.

Corbyn argues he is using the ‘right terms’ for zionism. That he wants us to understand ‘irony’. That he never inhaled. That he never had sexual relations with that woman.

Semantics. Shmemantics.

Yes, it is time for diasporan Jews to question and challenge the Israeli government, and (for people like me) to once again, like my uncle, strive for dialogue and peace. Between two states.

But it is also time for those who deny anti-Semitism in the UK and the left and the labour party to recognise what they are doing… before it is too late. I am a Jew. I am human. In fevered times, we need to pause. Stop the hate.

I have been looking for, am looking for, ways to forge dialogue – whether in the health service, in mental health, through arts, and perhaps in Arab-Israeli Jewish-Muslim dialogue like my wonderful uncle.

Maybe I can help a little though writing? I don’t know. My mother told me once that she stole a fountain pen from her father and smuggled it deep inside her coat pockets the night before she left Vienna.

Dear Mum. I am holding on to that pen, metaphorically.

Shalom.

© 2018 David Gilbert

Asking The Wrong Question: ‘How Can People So Cheerful, Talented and Beautiful Kill Themselves?’

Another teen kills herself at 18 years old. The media is lit up with quotes from loved ones and friends about how ‘talented’ she was at her chosen sport, with so much to live for, how ‘cheerful’ she had been, even days previously, and how ‘beautiful’ she was. The media echo how shocked everyone is. How could someone with ‘everything to live for’ want to die?

Who knows what happened. I have my own theories, as we all may do if we dwelled. It is lacking in respect to speculate too much, to intrude on bewilderment and total grief. As a parent, it would be unbearable.

But here is what I do know.

At 18, I was talented and seemingly cheerful. Friendly, caring, sensitive… more words that meant that those who knew me would have been shocked that I was treading on thin ice. That I may have been intellectually capable and apparently calm, but underneath I was fragile.

It was at that age roughly that I hit my head on a wall when a girl refused to go out with me. It was a year later when I couldn’t sleep with worry about my university essay. Another year later, and I was having daily anxiety attacks about the work I was doing.

And at 25, much to the ‘shock’ and ‘bewilderment’ of my loved ones, I had a massive nervous breakdown and was unable to cope with life or my mind for another six years.

I have written a fair amount on that time. But there are one or two main points that I think are worth considering here.

Firstly, it should come as little surprise that someone who is outwardly cheerful, should be suffering. What is more surprising is that we don’t learn. Time and time again, loved ones and friends (and the media) grip to their awkward beliefs that this ‘should not have happened’, that they have somehow been duped, and that outward appearance mirrors what lies below. How dumb are we, societally, not to learn?

Secondly, people tend not to be curious about the pressures that must have surrounded someone who kills themselves. People are wary of looking under the rock – at the reality that those who kill themselves often may be driven perfectionists, incapable of living with their own faults.

I vomited with anxiety most Saturday nights before swimming galas when in my early teens. The signs were there. I did not know how to deal with fractures in my self-worth and felt I could not be anything other than perfect. At 56, I still live with that unfortunate legacy. It is not about blaming families or loved ones – my parents did all they can, and had their share of pressures themselves.

It is more about finding ways to check in, finding ways of assuring kids that they are loved and worthwhile even if they fail sometimes. That, as humans, we are enough. Societally, we are so far from being able to do this, it almost unbearable to witness these days. And, during such volatile times, being ‘good enough’, cultivating character rather than personality seems so old-fashioned as to be almost ridiculous. Almost.

Thirdly, it is not enough to put at the bottom of an article, akin to the small print in a contract, ‘go seek support’. It is patently inadequate merely to urge people to ‘talk’. It seems particularly contradictory when pinned as an afterthought to an article on the cheeriness of the person who has killed themselves! The whole thrust of articles on ‘young’ ‘talented’ ‘cheery’ ‘good looking’ who have killed themselves is to convey this sense of denial and a ‘how could they’ tone that drives curiosity away.

A little note urging people to talk is a sticking plaster. This is almost irresponsible journalism – insidious and hypocritical.

Fourthly: As a teen, I would not have been able to talk, to articulate what I was going through. In the bubble of my sense of perfectibility, I did not have the language or self-knowledge to express what I was feeling. I would not have been able to admit to doubt, without a huge wrench opening up in my world. A crack that would turn into an abyss. If you had asked me how I was, I would have said ‘fine’. And would not have been ‘lying’. Life (and not feeling well) is not as simple as the ‘let’s talk’ brigadistas suggest.

So, what helps? I am not sure, but I know the rest of my life and career will be spent trying to find out how to help. I guess the first thing – maybe the only thing I know at the moment – is that if you know any youngster who is cheerful, talented and, yes, even beautiful, don’t wait to reassure them that they are loved for who they are, not who they are outwardly or will be in the future.

I really don’t have answers, but I know better questions. They do not revolve around ‘how come someone so cheerful kill herself?’ It is about asking ‘what can I and we do to make sure kids feel OK about themselves?’. Somewhere in that morass, lie some better answers…

© 2018 David Gilbert

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Harnessing The Renewable Energy of Simon Stevens

I wasn’t going to write a blog. Poetry in the sun beckons. But I blame Ally for goading me on twitter.

It is always though a pleasant surprise to wake up to the latest nonsenses of Simon Stevens and his well-paid crew. Having seemingly had little success boshing the big boys in acute trusts through new care models, STPs, ACSs, ACOs and now commissioning alliances (not to mention the expense of all this rebranding and re-logoing)… he has pushed his new medical director to play bad cop.

The NHS is set to save £200m by banning useless, risky and unnecessary interventions. What could possibly be bad about that?

(Don’t get me wrong, a lot of that stuff is unnecessary, but it’s not quite so simple).

Well, for one thing it shows that NHS England has given up on trying to change systems, engage stakeholders and foster collaborative leadership, partnerships and transparency. In its increasing desperation it has adopted populist tactics that appeal to demagoguery.

Out has gone any pretence to involve communities, patients or citizens in discussions about rationing or prioritisation. Actually, money for that went a while back.

I get that as, to be honest, SS has never really understood how to do that listening and working together thing. To lampoon someone who has talked about harnessing the renewable energy of communities for co-production is too easy. The only renewable energy he could and should be harvesting is his own wind. Though I do have another option (see below).

What is a little more surprising is not his lack of integrity. That was always pretty obvious. But his boys thinking that a ‘just say no’ policy will work. Is he stupid as well as unethical? I could not possibly comment. All I know is his and NHS England’s leadership credentials are buggered.

As any good (or even bad) quality improvement acolyte appreciates, changes like this have unintended consequences. Firstly, all those hospital trusts who will potentially lose out on repeated income from, say costly orthopaedic interventions will cry foul and will begin again now to talk about ‘destabilising the health economy’. So, some of the big ticket items – the things he wants to happen – just won’t happen. Power is power – and that lies still largely with acute hospitals, medical professions and big pharma.

Secondly the temptation to blame those feckless patients for ‘demanding’ treatments will become irresistible. There is no money in the wider economy to pay for what people should have access to – support for well-being in the community, walking clubs, free gym prescriptions (let alone better housing). The money saved will not be spent elsewhere (it never has been) and people will be orphaned from any care and support whatsoever. But much easier to blame the victim and those who are powerless and in love with the NHS (and those who pay your salary, Mr Stevens). Loyalty and guilt are always a point of leverage for the privileged.

Thirdly, complaints will soar, frontline admin and non-clinical services will be flooded with complex conversations to be had. It will not be enough to print a few A5 leaflets saying in red bold 14 font that ‘you have a responsibility not to ask’ for unnecessary stuff. Comms campaigns will be rolled out (many comms leaders are on £100k plus) run by those friends of the NHS, like McKinseys. Money will be found, new branding imagined, infographics produced, breakfast seminars well-pastried.

Meanwhile, It has taken big pharma decades to build an industry that persuades docs to prescribe antibiotics to humans and your pet cat Tiddles. A few leaflets on ‘don’t ask for drugs’ has not stemmed the tide of a medico-institutional industry bringing a worldwide threat of antibiotic resistance to your child’s front door. Expectation and demand can only be solved by patients and citizens in dialogue and positions of decision making to bring about sensible upstream solutions. This is about power really.

But it is more convenient to be a dictator. This seems to be SS’s last stand. It has the hallmarks of a desperate man who has totally lost his rag.

But try not to feel sorry for him. He is on £200,000 and had a jolly period at the elitist end of the management consultancy market. His senior management team and many in regional offices and other outdated national and regional quangoes are not far short of that figure.

Add all those heads and transformers in national research bodies and the opaque world of AHSNs, Public Health England, CLAHRCs, Leadership Academies, Health Education Board, weird horizonal improvement agencies where infographically entitled instagrammers spout their absurdities… the loveliness goes round and round as they swap seats with each other.

Oh did I mention how much money the think tanks have? Sadly, that is not renewable, ‘cos of no possible citizen say. However, one would like to imagine erstwhile philanthropists and royal endowment funders turning in their graves at the expense of raisin buns.

Meanwhile the benefactors of the policy and thought-leader (ha-ha-ha) industry continue their ghostly shift up and down glass lifts and continue to schmooze with Jeremy and Simon. And oh those reports repeating sad stats that fill shelves (just think of all the poetry that could sit there brimming with more insight).

All of which fantastical verbage reminds me of another potential route to help heal our (yes ‘our’) healthcare system. But that would mean also harnessing the renewable assets of that coasting under-performing workforce – national leaders.

The CQC costs me and you £200m a year. Coincidentally, that is precisely the amount that SS and his gang want to save with this ‘ban’ on treatments. There are 500 Trusts, CCGs, etc with each of their exec team earning around £100-£150k. 10% – 15% ‘leadership tax’ would save about £50 million.

Plug in the entire management team of the 50-100 quangos (including regional offices etc) and you could easily take that up to £100m.

So, a 10% salary cut for national leaders (allegedly) plus halving the budget of the CQC would save you and me the £200m touted this morning in the tabloids.

Theresa May, bless her, has chimed in that she wants to ‘listen to the people’ as to how these sorts of cuts can be made. Listening to the above? Mwahahahahahaha….

As I write this in my local café, the radio plays the Monkees’ ‘Daydream Believer’.

Hey-ho. I’m off to write poetry in the sun. More effective. Certainly more fun.

 

© 2018 David Gilbert

 

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ReVerse – How poetry can make the NHS better

Why poetry is important 

Poetry offers a quivering attention on the present, a luminous slant on intention and a myriad of refracted potential futures. It can reframe problems and provide insights into new ways of doing things.

It is inherently a slowing down tool. And places itself in opposition to our frantic habitual natures and the almost incessant stimuli surrounding us. It is also a widely misunderstood and beautiful art form.

In order to attend to the words, the sound, the rhythm and the shifted perspectives of poetry, you have to throw yourself into reverse gear. And put on the brake.

It is all too apparent to me – in my personal and professional life – that the one thing we cannot do in the NHS is to stop. And, ironically, it is the one thing we have to do. In order to reflect on practice, in order to listen, in order to communicate, in order to share. Everyone is shouting, few are conducting any form of conversation.

Now, more than ever, we need safe places to have difficult conversations. Partly because the healthcare system is in crisis. We all know that. But also because we are unwell.

People who use services are obviously unwell. And, on top of that have to face multiple system challenges to get high quality, safe, continuity of care. The frustrations of not being treated as a human being, with healing connections add insult to injury. And, as I have pointed out many times previously, the way we ‘do’ engagement, and the wasted effort expended on mechanisms that fail to have an impact and buffer people from power, further exacerbate a ‘them and us’ culture.

Staff are increasingly distressed within a turbulent, top-down, forever changing and complex environment. Staff wellbeing initiatives are usually focused on being ‘resilient’. I once saw a poster on a wall in a NHS office: ‘Overwhelm is a choice’. As if we can lay blame on individuals with little power within the system to change things.

Arts and Health – From Narrative To Verse

The All-Party Parliamentary Group on Arts, Health and Wellbeing (APPGAHW) report stated: “There is comprehensive evidence and numerous examples of practice which demonstrate the beneficial impact of the arts. However, the potential contribution has been all too little realised”.

Most arts and wellbeing programmes focus on music, dance or visual arts. The APPGAWHW report cites 3333 references to ‘art’, 326 to ‘music’, 173 to ‘dance’, 57 to ‘literature’, 25 to ‘writing’, 18 to ‘poetry’. Few case studies come from the poetry world.

‘Narrative’ and ‘story-telling’ are becoming more valued in healthcare, but poetry is seldom utilised within learning and development, quality improvement or research. Patients may be encouraged to write ‘cathartically, or seek solace in traditional forms. Individual poets may be commissioned for broadcasting messages and a few initiatives stress verse as part of a wider movement to articulate experience. The medical humanities may nod in the direction of verse from time to time.

Poetry – an oblique strategy

Fiona Sampson highlights poetry as an oblique strategy to open new windows on dark worlds. The APPGAWH states: “poetry appeals to similar parts of the brain as song, performed poetry escapes the definitional constraints of the written word to communicate through repetition, rhythm, syntax and movement experienced in the moment”. Yet the dearth of high quality interventions that harness the potential for verse to be an instrument for wellbeing verges on shocking.

Poets often dwell on ‘darkness’ and many collections deal with ill-health, cancer or dementia particularly. But there is less frequent exploration beyond the surface of mental health (e.g. meanings of different diagnoses or types of trauma). People could use poetry to articulate meaning, make sense of their worlds in different ways in order to understand, elucidate and lay claim to the words that underpin or can prevent well-being.

Staff now share many of their clients’ problems. The APPGAWH highlights “poor-quality work combines high demand and effort with low control and reward. The main causes of sickness absence are anxiety, depression and stress. Arts engagement at work and in leisure helps to overcome anxiety, depression and stress”.

Arts and humanities should be embedded in training and professional development. Dr. Alec Grant, an independent scholar, states: “Mental health workers are un-reflexively trapped in the psychic prison of rationality. Any perceived inappropriate displays of emotion from people who aren’t patients/users is disparaged. This displays wider assumptions about the need to demarcate ‘mad’ from ‘sane’ behaviour, speaks volumes about how out of step institutional cultural mental health practice is. Emotion as a resource in MH research is disparaged”.

Poetry could explore particularly the relationships between staff and service users, so as to ‘equalise spaces’, reframe experiences, promote trust, shift dynamics and reveal shared insights.

Many people will have suffered through poor educational experiences, not be able to read or write, or will not have English as a first language. Poetry can be seen as elitist or ‘difficult’. Part of the challenge for poetry in health care is to break down these barriers in different ways (using story-telling, verse or song from different cultures, spoken word, performance poetry, lyrics etc).

The time is ripe for fostering ‘equalising spaces’ for people to come together in safe, creative places – to discover the joy of collaborative efforts in the most liberating of art forms.

This is why I am launching ReVerse – Artful dialogue between staff and service users 

I am now running programmes that use poetry as a shared language for engagement and in order to reimagine mental health. These will create healing relationships and ‘equalising spaces’ between people who use mental healthcare and staff through reading, writing, reflecting, reframing, inspiring and improving together.

I am delighted to announce that our first programme is being run in Manchester in July. If you want to find out more, or are interested in running workshops, please get in touch: davidgilbert43@yahoo.co.uk

(c) 2018 David Gilbert

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

 

Improvement – It’s Bloody Hard Work!

As I left home at 5.00am this morning, I thought of my courageous friend Ally and ‘that’ blog. How she has called out the ‘shiny’ improvement movement. And how tired many Patient Leader friends are of the work. And I thought of the personal price I have paid over the last three years – three scary mental health relapses.

And of the work that has gone into getting this far with my amazing colleagues at the Sussex MSK Partnership – how the Partnership has delivered, improved and changed how services are delivered, at a time of huge pressures in the NHS.

And how we have sweated together to undertake a different approach to being ‘patient-centred’ and holding close a model of ‘patients and carers being true partners’ in improvement work.

Patients as Part of The Team

When we formed our pool of Patient Partners – eight fab people, valued, paid and supported to be part of improvement work – I always wanted us to move into the heart of decision making. I wanted them to be at every MDT, the regular meetings of practitioners overseeing quality in each of our musculoskeletal pathways (orthopaedic and rheumatological, pain management and physio).

That was two years ago. First we battled hard to get their places as more than story-tellers and feedback fodder in redesign work – the partners proving themselves well able to reframe problems, generate new solutions and model collaborative leadership and shift dynamics. They have become trusted equals in any improvement processes. It has not been easy and is dependent on time, money, space, trust… all the things the NHS has precious little of.

And when I realised we could not ‘supply’ two patient partners in each of our eight MDTs (not enough budget, not enough capacity, not enough time on agendas), we switched paths. In recent months we have been talking to Kieran Barnard, our lead for the ‘hip and knee’ pathway. And three of the patient partners have planned a pilot for how patient partners might be involved. The idea being to hold a ‘special MDT’ to focus on issues of quality and patient experience. And for us to see how this went and whether it could be a model for other pathways.

Meanwhile, over on the data side of things

At the same time, we have been gathering a shed load of patient experience data, but my tiny team (basically two of us, me and the special Anna Roberts) have been bogged down in ‘feeding the beast’ – gathering data, analysing hundreds of qualitative comments and corporate reporting. We have not been able to move into the space where we could feed the data to the right level and work with teams to use the data for improvement.

So, I have been aware that the last two years have been about, on the one hand building the foundations for the patient experience data machine so as to generate useful data, find capacity for analysing it, and mechanisms to better report (as well as making sure we could find out what is done with it) and on the other building the case for, and capacity of, patient partners.

Shall I say it again? It’s been hard. And all the while, my colleagues have been working equally hard, more so, to deliver the service and also introduce more patient-centred practices, alongside our amazing colleague, Chloe Stewart, who has supported them to undertake shared decision making and signposting to supported self-management.

It’s been a long journey

So, today, I woke up at 5, drove around the M25 to a small meeting room at The Vale Surgery where the Hip and Knee Pathway Team met at 8.00am. And I met Jenny, one of our Patient Partners outside to discuss our half hour slot. This was to set out how we were collecting data and discuss staff issues and concerns around people’s experiences of services – and primarily to get agreement in principle for a pilot ‘special MDT’.

And, as with all plans, as with all work in the NHS, as with life, the minutes ticked away as other agenda items ate in to ‘our’ time with Kieran doing his best to cover what needed to be covered, all the while glancing nervously at me and Jenny!

With 15 minutes till the end, we got our go. And we made our case and listened to what came back. It was beyond our wildest dreams.

Many of the practitioners stayed behind to discuss how patients and staff could collaborate. They wanted more – they wanted to hear about experiences, they wanted to talk about patient and staff assumptions, they wanted to explore difficult issues, they wanted patients as part of the team, they wanted to find a way forward. They were hungry for time and space to reflect together (and ‘together’ meant with patients!).

And so, next MDT we will have an hour’s ‘protected time’ for an agenda that will include a focus on a hot topic, how we use data and how we can ensure patients are part of regular MDTs, and this could pave the way for a different model of reflective governance across the Partnership (maybe?)… Our work is done.

Almost…

Meanwhile, next week
• We will have ready a People Bank of about 200 MSK patients across the patch who have volunteered to take part in ad-hoc involvement activities
• We will launch a new improvement project on how patients can better prepare for consultations after referral – it will have patients on the core working group as well as ongoing engagement work to design the information aspect of things (i.e. The forms that patients fill in about what matters to them that practitioners will have with them when they come to an appointment)
• Patient partners will lead an hour and a half workshop at our staff event on access, inclusion and diversity
• Anna and I will present plans for a more systematic way of using patient experience data
• Me and another patient partner will meet with the rheumatology team to think through better ways to gather information on what matters to patients who come through the rheumatology service

In addition, the next Patient Forum in June will focus corporately on how we use patient experience data and also be a place where we can reflect on work so far

This stuff is not shiny

A few weeks ago, I was ill. Suddenly, the jigsaw pieces of the Patient Director work are coming together. Weird. Wonderful.

Thank you to all our colleagues and patient partners for helping make this happen.

And, as I was driving home, I thought of brave Ally and the shiny improvement brigadistas. Those who seem to me to assume that infographics and conferences will change the day.

This stuff is not shiny. This stuff is hard. This stuff takes a fuck of a lot of blood, sweat and crying in toilets. It has taken three years for this stuff to begin to take off – months of building relationships, doing the ground work, making the case for a form of engagement predicated on two things:
1. People with experiences of living with long term conditions or life-changing illness, injury or disability bring wisdom and insight from the caves of suffering
2. Those same people can help practitioners and organisations in their work and to improve experiences and quality

The only thing that’s shiny (and temporary while I write this) is the sun. May you have a shiny weekend. And undertake not-so-shiny improvement.

(c) 2018 David Gilbert (all views expressed here are my own)

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