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Another Year of Working on What Matters – a Patient Director Healthcheck

This blog is based on a forthcoming report I am writing as Patient Director for our Patient and Carer Forum. It is a review of the year from April 2017 to March 2018. Forgive the slightly institutional tone, but I hope it provides a flavour of what we are doing, and the role of a Patient Director.

Of course, this patient-centred work is being developed during a time of huge challenge. At a time also, when it would be easy to forego development work of many kinds, particularly in the field of ‘patient and public engagement’. This would be a huge mistake in my mind, and so it is to the credit of my organisation and colleagues that this work continues to be supported.

Background

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

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

The Partnership made a brave decision to appoint the first Patient Director – someone who has had experience of a life-changing illness, injury or disability (in my case, mental health problems) and can harness these experiences at senior decision making levels. This role ensures that patient leadership is embedded at senior level, within an executive team that includes a clinical director and managing director. This models shared decision making at corporate level.

The Patient Director’s role is to help The Partnership focus on what matters. This includes:
• Hard wiring the work – embedding ‘patient-centred’ cultures, systems and processes
• Learning and Improving – Making sure we learn from, & act on, patients’ experiences data
• Patient as Partners – Supporting people to be influential, valued partners in decision-making

The portfolio of work overseen by the Patient Director

The work below reports specifically on the portfolio of work led by the Patient Director and augments the Partnership’s other work to ensure we focus on what matters, and the work of our lead on self-management and shared decision making, Chloe Stewart. It doesn’t include all the more ‘invisible’ stuff I try to do, developing a shared understanding of patient leadership and patients as partners, and/or helping support a different way of working – and, of course, I am far from the only one doing that. NB. I work three days a week for the Partnership.

We do not have a Patient and Public Engagement and/or Patient Experience Team. The work relies on informal relationships across different locations and pathway teams. We work closely with hardworking and inspiring managers, clinicians and support staff colleagues. Crucially, it also involves Anna Roberts, Quality and Improvement Officer, who joined us late last year, and previously Jo Howe. Together, we have worked hard this year to ensure the following stuff happens.

1. Patients as Partners (and other patient and public engagement work)

We have nine patient and carer partners (PCPs), Iris Keppler, Stan Pearce, Jenny Preece, Lesley Preece, Marilyn Walker, Jane Watts, Norman Webster, Cherry White, Lindsay Whittaker. They bring professional and personal wisdom alongside their experiences of using our services. PCPs are not ‘representatives’ or there to provide feedback, but are ‘critical friends’ who check assumptions, ask questions, provide insights into reframing issues or identifying problems, change dynamics and model collaborative leadership.

My role is to broker opportunities in improvement or governance & support them to ensure they have the capacity and capability to be effective. Patient and Carer Partners augment other involvement and feedback work. In the last year:
• We have put systems in place to hard-wire the work, including dedicated budget, reimbursement policy based on NHS Guidance, monthly reflective meetings, role and person specifications
• PCPs have worked on eight improvement projects over the last two years, three this year. On admin processes, pain services, shared decision making, patient outcome measures, physio self-referral, support for admin staff, integration of physical and mental health
• PCPs attended three multi-disciplinary teams, MDTs (pain, hip & knee, physio), sit on key governance groups (eg Clinical Quality Group) attended cross-organisational Quality Summits & were central to our recent CQC inspection
• PCPs led workshops at last year’s staff conference (on patient partnership) & will lead a workshop on access this year. We plan a patient-led summit in Autumn 2018 on access
• PCPs presented at local and national events (e.g. Local GP conference, national ‘Rehumanising care’ event, forthcoming; NHS England Right Care event on shared decision making; The Snow Community, national network for Patient Leaders)
• PCPs have been involved in recruitment processes and internal education sessions
• PCPs have developed three strategic priorities for next year:
A. Quality and patient experience (better use of PREMs data and dialogue with staff about quality on MDTs)
B. Being cared for as a human being (integration & continuity in rheumatology and pain)
C. Access and inclusion (beyond waiting times)

Other engagement work includes:
• We have run seven patient and carer forums attended by about 100 different patients/carers and members of (clinical and support) staff that have looked in depth at patient-centred improvement work (e.g. Shared decision making, self-management, use of PREMs data, patient and public engagement).
• We have helped clinical champions and other individual project leaders (e.g. For physio self referral) to undertake one-off engagement activities and/or feedback methods.
• We have developed a ‘People Bank’ of 200 patients who want to be more involved. This will involve identifying and brokering opportunities for engagement and a regular newsletter.

2. Learning from, and improving, patients’ experiences

Pathway teams (nine of them) receive weekly patient comments. We now audit these monthly & have processes to monitor and report on learning and action taken:
• Comments have been used as plaudits to raise morale
• Comments have helped us improve reception interface, take action on privacy, feed back on rare instances of poor clinical conversations & explore communication issues (e.g. appointment and clinic outcome letters, explanations regarding follow up appointments).

Pathway teams receive a quarterly PREMs (patient reported experience measures) survey report that provide trends against baseline data for the pathway across themes such as overall experiences, ‘pre-appointment’ experience, what happens at the consultation (including care & compassion, quality of information & involvement). We now have processes in places for monitoring and reporting actions taken that are aligned to the six-monthly corporate reporting of pathway leads on other aspects of activity and quality
• This data has assured us of high rates of ‘satisfaction’ & allowed us to see that experiences of waiting times and environment have improved as a result of corporate actions.
• This data allowed us to ensure targeted strategic priorities for patient partners for 2018/19
• PREMs data (quantitative and qualitative) has played a major role in focusing our CQUIN project (see below) on what matters
• We are piloting innovative methods to ensure patients analyse and discuss PREMS data (including analysing ‘actionable’ comments, patients on MDTs, exploring experience data in more depth in the spine pathway, holding a ‘special’ hip and knee MDT on PREMs)

We have improved processes for complaints and incidents, for generating and integrating learning from complaints and incidents with PREMs feedback. We are sorting out glitches in the PREMs data gathering work, like ensuring links work, trying to cut down on duplication of questions asked, etc.

As part of an Improvement Project about enabling support staff to give a great service, we:
• Ran weekly ‘what matters’ informal learning sessions for call handlers and admin staff to generate learning from what they know about patients’ experiences
• Gathered data from 100 members of staff and six hundred patients around issues for improvement in enabling support staff to give a great service
• Have co-designed and run five training sessions for call handlers on routine and difficult conversations, for new and experienced staff, with about 25 attendees
• Have run two clinically led sessions for admin staff about demystification of clinical terminology attended by 16 staff
• Developed accompanying materials (glossary of clinical terminology, checklist for call handlers) that are being included in the new staff handbook
• Provided improvements, such as new chairs designed specifically for people with MSK in our waiting rooms, access to water, quieter environments, improved signage and access support for patients to our clinics
• We have developed a new role specification for receptionists that better values and allows them to focus on what matters to patients and carers

If you have got this far, well done. We have got this far too. And we think it’s well done. Loads more challenges. Onwards and upwards.

Please note, the information above is purely based on my perceptions and is, of course, my own personal opinion.

(c) 2018 David Gilbert

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

 

 

 

 

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Tangled – a modern tale about the NHS Crisis

It would be wise to keep a cool eye on current debate about the ‘NHS crisis’. All is not as it seems.

Tangled

There are different issues to be disentangled.

Firstly, purpose and vision. What matters to people who use services and to those that pay for them? And how does the NHS keep focused on that? We will come back to this one.

Secondly, how services are delivered. Or, in the jargon, what sort of model of care or what sort of services should or can be provided. This hinges nowadays on another power battle – whether a traditional ‘hospital-centric’ and ‘illness-focused’ model of care should be sustained and/or how healthcare services can be better joined up (‘integrated’), prevent people getting ill in the first place or better to support them to look after themselves in the community.

Thirdly, who should provide services. This is about money and accountability – including the role of the private sector.

In any decent strategic mind, the above steps are taken in the order above: purpose and vision comes first. Form follows function.

However, given the ideological heat around the iconic NHS, it is inevitable that the third issue – who provides services (rather than what or how) drives the debate as people hold such strong ideological assumptions. This fire is fanned because ‘sustainability and transformation plans’ (STPs) that could change how the NHS operates have been going on largely in secret.

The operation to change the NHS has been driven and riven by secrecy and, in turn, fear. Fear of a dialogue around ‘privatisation’ and/or ‘restructuring’ (and decisions to close local hospitals, for example). Conspiracy theories abound, particularly about ‘marketisation’ and ‘putting profits before patients’ (these theories may be true). I have blogged about both these issues here and here.

Powerful medical and institutional interests are piling in. Medical representative organisations arraigned against privatisation though have a mixed approach usually to private practice. And the patient movement, such that it is, would be wise to sometimes treat the BMA’s arguments (for example) with a pinch of salt. At least, that’s my opinion.

And acute hospital chief executives are very much part of the decision making structures around different models of care (e.g. In STPs) and battling for their own vested interests.

It’s also intriguing to read articles by policy leaders I respect (though don’t necessarily agree with) arguing that STPs are the best way towards less competition and more collaboration – that it is only in those spaces that the Thatcherite purchaser-provider split is being re-considered wholesale. It remains ironic though if they are not practicing what they preach – advocating better relationships with the rest of us, while huddling together in secret.

This is not black and white. The entanglement is getting more and more knotty.

Meanwhile, media and public debate has been hijacked by the A&E crisis. Because of the ongoing hubbub about accountability, any alternative dialogue about what to do (e.g. Patient-led solutions, see here) is drowned. See here

Back To Basics

As someone who uses mental health services, it concerns me that the noise surrounding the NHS crisis ignores my voice and any debate on what matters to me. For example, I don’t believe more and more beds will fix anything. It may be a short term solution but it could prop up the acute sector and leave people like me, and other people who require better social care, housing and community care on the streets (literally).

Money is not infinite, and has to come from somewhere. Yes, it is to do with austerity, but all health economises face constraints and decisions on where to steer limited resources. Let’s not be naive in saying there are no hard choices to make.

Most people who have had life changing illness, injury or disability or with LTCs or who are carers know that change is needed – more holistic, consistent and coordinated care, often closest to where they live. And many are engaged in work to shift models of care. We don’t want to end up in A&E because primary care is inaccessible.

As a citizen and tax-payer, I want to know where my money is spent. I also want leaders to be accountable. And I would much prefer that money that goes into health services stays in the NHS for the benefit of patients rather than shareholders.

The heat of the debate though derails better engagement and solutions. It also masks the need for patient and citizen power in board rooms – something I do not see either ‘side’ making with any true force. All parties assume they know what is best for ‘us’.

If NHS leaders were truly strategic, they would first be asking – ‘what matters?’ – the vision and purpose question. The one that kicked off this blog. And, how can you answer that without involving people as true partners and patient and citizen leaders being in positions of power.

Let’s cut the crap: You would not have a women-centred organisation run solely by men. Why do we have a ‘patient-centred’ NHS that is run by clinical, managerial and policy leaders? Not a patient in sight. And, no, professionals are not patients (though they can be), and professional leaders are (mostly) not patient leaders – see here for a debunk of that framing.

I have long argued that we are only at the foothills of local patient and citizen leadership. In terms of influence in policy making, we aren’t out of the jungle hut.

Personally, I think we could have truly accountable models and systems of care and sustain the NHS and restrict the role of the private sector – but ONLY IF people are true partners in current dialogue and change.

Me and loads of patients, community folk and good citizens could help. We could if clinical, managerial and policy leaders want us to have some power. Do they? Hmmmm…

Meanwhile, let’s continue to take it as best we can.


 

(c) 2018 David Gilbert

Read my blogs on patient-led healthcare at: http://www.futurepatientblog.com

Follow me on Twitter @DavidGilbert43

 

Thirteen Poems from 2017

These are my own 13 favourite poems written during this year. I hope you like them.

Please forgive the self-promotion. But sometimes poets need to share. This is as much to do with sharing my love of poetry and eagerness for others to enter its world, as for my ego. Well, that’s my take.

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

A Listening

I thought I had something
to say. But what’s best said
is like geese in formation,
late bees on lavender
or sparrows at the fountain.
The way we begin and end
a sentence, is not by words
but a listening for wings.

Vienna 1938
For my mother

Dear morning, I fear the opening night,
fur coats and hats, the dance, heavy feet
shifting to the waltz, cheery and beery

If I was old enough and wise, I would head
for the wine cellars and not come out
but I know the final platform, departures and arrivals

The toads march into town
I see neighbours gawping, white horses powerless
children stuffing elegant cake into their fat mouths

In my forests, I plant frosts
leave stars under the trees
scatter the names of those I will never meet or love

The square beneath the balcony is empty at this hour
I hear the scratch of history’s oblique pen
I steal what I can

The Yellow Hoop

What was taken
from that girl in the streets of Baden
dark brown eyes wide
on the neighbours’ turning –

the spit, the stars, the signs –
father rifling through his papers
whisperings in the kitchen at night
before the troops arrived?

She had a yellow hoop
that she rolled round the garden
and I know there was a forest nearby.
Did she stop near bluebells?

Did she smell the burning?
I suppose she felt it would be better
if everyone kept quiet.

Hope Frog

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

Poke it
on the bloodied lawn
with a stick
to see if it is still alive

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

You’d prefer it gone
to flopping around
or flies
wait a couple of days for it

to be finished off
by the neighbour’s tom

Debris

I have left bits of myself all over
and am tidying up

not just organs or skin
but pencils and opinion

I am scattered by hills
leave socks in different rooms

have talked and talked
and not stopped talking

The debris
of a life is measured

by the amount of energy
spent in dispersal

and hours mushrooming
It is a study in seedlings and spores

You could argue it is small
grenades set to go off

when least expected
But in the end

it is camouflage
or unconsciously intentional

unmending in public spaces
so as to be mended

Disguise of course
for when you were truly broken

eternity at roadsides
waiting for a kind passer-by

to bend and ask: Is this yours?
And for the strong friend

to let you know
where each bit belongs

Some Curves Are More Beautiful Than Others

Some curves are more beautiful than others.
Take this afternoon’s for example, the sheer wall
of the Dublin Criminal Court of Justice
or the path down by the empty bandstand
in Phoenix Park, the low fence that seemed

(once I could focus and was confident
of heading in the right direction) as fine
a gesture, as smooth, as the river itself,
or the gulls’ high figures of eight, or finally
those, almost invisible, which by grace

or good fortune I guess, reveal a self
unfolding. But even now you don’t forget
the others. Once, I was left by the roadside
and blind bend with no way of imagining
what could be just around that corner.

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

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

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

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

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

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

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

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

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

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

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

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

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

Thaw

you don’t have to be right, he realised
and three days later, out of kindness, he melted
under the sun’s gorgeousness and through
the heat that had risen up
like trouble stored too long

wrapped into a smaller version of himself
while he was shrinking he asked
whether he had been snow all along
whether these questions come too late
and whether, for some who cannot bear it,
they should be asked at all

his friends found him amongst the leaves
that had been his hair and buttons that had been his eyes
brewing gently under the enormous skies
and they cried a little and laughed a lot
or was it the other way round?

I Come Here For The Gathering
For The Bethlem Artists

I come here for the gathering
of memory that lies low on the lawns
like a frost

for the art of recognition
in another’s flickering eyes

as we move past
with barely discernible gestures
like in an auction or a mason’s touch.

It is a wink and a nod
that says no matter what

comes back or how or where you have been
we are here and now and together.
We become like foals

lapsing quietly into ourselves
at the edge of a field, or

like humans, with cups of tea
out of consideration for what lies beneath.
We fish with nets

sifting what needs to be remembered
from what we need to forget.

Clearly
For uncle Robin (1929-2006)

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

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

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

He Had Not Asked To Be Raised In The Mountains

Thrown up out of sleep
by the ancient itch, repetitive scene
where he dodges the ricochet before the bullets hit

and lies with the heft of an unfortunate gift
his mote in amber
blaze in the midriff
cup still warm by his side

he had not asked to be raised in the mountains
mugged by altitude
one eye always on the road and river below
being told not to break the silence

hears the sea set off from mid-ocean
and its arrival at the harbour
moon lowering in the west
shoulder to the morning out and out
urged to the leaving

the valley beckoning
wild pink flowers in the unknowing hedgerows
sparrows winking at each gate post
the feral cat – black to its core – watching each step

shelter is unnecessary
nobody can suppose what he saw
nobody can tell any more what it is
he is required to imagine

we have all been bereft
seduced by others how to win back stars

and seldom has he walked as steadily as this
without hesitation or remorse
occluded against the wide walls of the familiar mountains

how time’s fury settles
into a sad knowing
how the wind lets go
the shaken tree
and its leftover blown apples

his mother will miss him

The Art

The art is in entering the dark a little
like an evening carriage
hauled slowly into the sidings

and to forget one’s name
become accustomed

the sun lowering by a phalanx of Plane Trees
their wintry greenish bark lit up
in one last glow of reptilian green

these transitions are never as easy as they say

the rain on the empty climbing frame
makes it glisten

looking up you realise that even
pigeons can dip and glide
when called upon to do so

some come through with scars, some don’t
arrive at all within morning’s clear specification

then again, I am for anything that might
bring us back to love or daylight’s
accidental offerings

It Is Fast Becoming Alright

It is fast becoming alright for everything to be ordinary.
It is alright to wait for a while at bus stops, pause on amber
breathe long, unlock the door and not expect a portal.

It is no longer necessary to be magnificent or maleficent.
To blaze, then burn. To froth. The sky is easy.
It is becoming alright to be full of words but for them

not to mean anything, which means they are free to roam.
You don’t have to take them to your bed, enter their armour,
tell everyone what you know they are telling you. This poem

does not set out to alter worlds. You know it is hard enough
to change your own. But some lines are there for the taking.
It is at last alright to be enough. And enough to be alright.

 

If you liked these poems, please do read others at futurepatientblog.com

I am a kind person, but if you plagiarise them, I will come after you. I promise.

All poems © 2017 David Gilbert

 

 

 

 

 

 

 

 

 

 

 

 

 

The Gang Is Still Here – Why 2017 was the year of Patient Leadership

OK, so 2017 was mostly rubbish. But then again, here is the poet (Blake for those who don’t know) putting us right:

“What is the price of Experience? Do men buy it for a song?
Or wisdom for a dance in the street? No, it is bought with the price
Of all that a man hath, his house, his wife, his children
Wisdom is sold in the desolate market where none come to buy
And in the wither’d field where the farmer ploughs for bread in vain”

Five Years Ago

Five years ago, a gang of us – people who had life changing illness, injury or disability – decided to meet up. We were sick and tired (literally) and sick and tired of the way the healthcare system ignored our rights, our voices, our insight and wisdom.

Mark Doughty and I had just formed the Centre for Patient Leadership (CPL) and some of us called ourselves, mischievously almost, Patient Leaders.

Our vision as a little group was not entirely clear. We just wanted a place to hang out together, share stories, moan about how hard the work was, and think of ways we could help each other. It was a self-help group for the dispossessed. And we ate cake.

Nobody was using the term ‘patient leader’ which, to us meant something like – people who had been through stuff who wanted to change stuff. And, importantly, wanted to make change by ‘modelling’ a different way of being, primarily by shifting from victim and child mode to a way of collaborating on an equal adult basis.

We were doing different things – campaigning, self-management, entrepreneurship and innovation, peer support, being part of improvement or governance, all sorts… from all different walks of life and living with different conditions. But we had so much in common – we had wisdom and insight borne of suffering that we wanted to use to help others and to help improve the healthcare system.

I was learning a lot of this at the time from my friend Mark Doughty, who had been on his own personal and professional journey and came to bring his vast experience in personal and professional development to the fore in the CPL days. And continues to do so.

And I was learning a whole load from the gang who met for cake.

Denise Stephens, a hero of mine, had created her own online community and business, promoting user-led design in assisted living, ‘Enabled By Design’.

There was David Festenstein, a guru in the field of stroke recovery, entrepreneur and one-man generator of kindness.

Karen Maskell was bravely pioneering a new approach to supporting patient leaders in Berkshire, that she dubbed ‘HealthMakers’ – a brilliant semantic take on the Olympic ‘changemaker’.

Lynne Craven, a superb changemaker herself was lending support through self-management support, as was Mark and CPL in the field of patient leadership.

Alison Cameron – a close buddy from the off, we have so much in common – was beginning her venture of rediscovery and improvement, safety and national advocacy work which was to take her into the hearts of thousands of healthcare leaders (she would probably say ‘up their noses’ too!). She continues to be the bravest, most inspirational, person I know.

Anya DeIongh, already well established as a guru in self-management helped us find our energy and played a key role in a sense of collective identity and gathering strength.

There was also Ceinwen Giles, a leader in her own right already, who had helped CPL evaluate its early impact, Dominic Stenning, a local and regional mental health advocate, one of the kindest and brightest people I’ve ever met, another Dominic (Makuvachuma-Walker), who brought his radical internationalist insight and wit, from the mental health and peer support world.

And, of course, the unique Michael Seres, who despite his QPR fandom, became one of my best friends – and a leading light in an international movement to see patients as leading a new wave entrepreneurship. I could go on, but it sounds too much like the Oscars.

Pretty much ignored

And the point is we hadn’t won anything yet. And at that time, the patient leadership movement was pretty much nowhere. Most people I met disputed the term patient leader, had no truck with patient leadership. I have to say, I do suppress a chuckle when I hear people now spouting the phrase – often still not quite knowing what the word means. They hated it a few years back. Lol.

So we ate cake and plotted, with no resources, no investment, no value being given to what we were doing collectively. We tried to meet every few months, scrabbling around for free venues or big enough cafes. We got a bit more strategic, but the best thing about meeting was just to hear each other, and share learning. Others joined us: Patrick Ojeer, Brenda Murray, Roz Davies, Laura Cleverley, Christine Morgan, Fiona McKenzie, Alex Silverstein, Trevor Fernandes, Sue Sibbald, Phil Sheridan, Sibylle Erdman, Kate James… amongst others. Apologies if your name is not here. I will add to the next draft!

Of course, this is to exclude others who were and are plugging away in their own fields, changing the world of health and social care. We also borrowed on other people’s ideas, but acknowledged them as much as we could – the user movement and people like the National Service and User Network (NSUN), the community development leaders, the folk working on collaborative leadership within the health service…

The Toll

And every time one of us, some of us, or all of us took one step forward, we were knocked back. By our own health conditions, by the barriers in the systems we were trying to change, and – for me, the most surprising and hurtful thing – by co-option and downright plagiarism (you know who you are).

People sometimes sucked our brains for free, then spat us out, and used the ideas to prop up their own fragile egos and academic or healthcare careers. I still find it hard to forgive and be generous, but I am getting there.

However, a few took a punt and gave us encouragement and opportunity to grow. The CLAHRC in NW London were first. Then came others like Jeremy Taylor and National Voices, the Health Service Journal, the BMJ, The Eastern Strategic Health Authority (mustered into action by the extraordinary leadership of Steve Laitner), Diabetes UK. They could see something was brewing.

We also have our loved cousins in other countries – hello, BC! 🙂 who have led the way in developing strong patient leader networks.

Others, like NHS England and the policy wonks were slower, and frustrating to work with, but are coming around.

I learned about the enormous inertia around healthcare systems and that we were in for the long haul – that we had a good deal to learn from other social movements, feminism and the disability rights movement in particular.

It is amazing to think that it is five years since those early meetings.

Five years later…

The term ‘patient leader’ will not go away. Amongst many acronym changes, the rise and fall of PCTs, Vanguards, STPs, ACOs and similar BS, well-meaning but sometimes useless quangos, Simon Stephens, his beard and his empty rhetoric about ‘community assets’… we are still here, plugging away. Making small changes. Making big ones.

Patient leadership is here to stay. Let us reiterate, this is about people who have been through stuff, who know stuff, who want to change stuff – in whatever way they can. But through partnership. All those academics who will write Phds off our hard work, who will write books and claim the credit for our hard work, who will stew over semantics and definitions. You know what… who the fuck cares. The work is the work. And it will go on.

(Note to self for 2018: Lose the bitterness, Gilbert)

This year has seen many of the people listed succumb to relapses in mental and physical health, but we are still here. The idealism, sensitivity and passion can be a curse as well as a blessing. We need to be more gentle with ourselves. But until now we have had no collective sense of identity and belonging, no wider gang, no sense of wider collective virtue or validation. Every time we are put down, told to go away or ignored is a trigger for our own past losses and the way we were treated. The political is intensely personal.

This year, we have seen the NHS in contortions about where the next big ideas will come from, trying – consciously or unconsciously – to ignore us and ours – but we are still here. And, we now see many members of staff who get it – firstly those who have been harmed themselves and then more broadly those who see that we are out, not to put people down, but help.

And, of the wider world’s idiocies – they affect us deeply and call upon our forces of endurance ever more deeply. On an individual level, the cruelty of austerity and benefits systems has affected a few in the gang, and I could weep about that. Instead, this year will be my last in patient engagement as I move more to give back to the cause of mental health.

Rosamund

This year, we have lost a pioneer, Rosamund Snow, but we have seen the first steps towards a national network of patient leaders, the Snow Community, sponsored initially by the good folk from NHS Improvement. We are still here, Rosamund, with you in our, and at our, heart.

Personally, I have come through a couple of major relapses in my mental health and continued to work and write. I am proud of that. But when I look at the hardships of this year, I am prouder of the gang. I love them all to bits. And I remain immensely confident that the gang is growing and will continue to improve and transform healthcare.

2017 has been rubbish, but we learn through suffering, and now is not the time to give up. The healthcare system needs us and our sisters and brothers in the system – stressed and demoralised staff (clinical, support staff and managers) – need support, love and partnership.

It is perhaps ironic that it is, ultimately, patients – people who have had life-changing illness, injury or disability – who will help heal the broken health system. Partly this is because we know what it is like to have the courage, wisdom and insight to get through hard times – because we can help others bring jewels back from the caves of suffering.

We have always known this. But slowly, others are realising this truth too.

I hope 2018 is better. But you know what, 2017 has been amazing too. Because we are still here.

(C) 2017 David Gilbert

And here is the poet, in full:

What is the price of Experience? Do men buy it for a song?
Or wisdom for a dance in the street? No, it is bought with the price
Of all that a man hath, his house, his wife, his children
Wisdom is sold in the desolate market where none come to buy
And in the wither’d field where the farmer ploughs for bread in vain

It is an easy thing to triumph in the summer’s sun
And in the vintage and to sing on the waggon loaded with corn
It is an easy thing to talk of patience to the afflicted
To speak the laws of prudence to the homeless wanderer
To listen to the hungry raven’s cry in wintry season
When the red blood is fill’d with wine and with the marrow of lambs

It is an easy thing to laugh at wrathful elements
To hear the dog howl at the wintry door, the ox in the slaughterhouse moan;
To see a god on every wind and a blessing on every blast
To hear sounds of love in the thunderstorm that destroys our enemies’ house;
To rejoice in the blight that covers his field and the sickness that cuts off his children
While our olive and vine sing and laugh round our door and our children bring fruits and flowers

Then the groan and the dolour are quite forgotten and the slave grinding at the mill
And the captive in chains and the poor in the prison and the soldier in the field
When the shatter’d bone hath laid him groaning among the happier dead
It is an easy thing to rejoice in the tents of prosperity:
Thus could I sing and thus rejoice: but it is not so with me.

 

 

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

Beyond The Asylum Mentality – why now is the time for dialogue in mental health

A New Yorker cartoon depicts one person saying to another: ‘Things were so much better when things were so much worse’.

Now: ‘things are so much better as things are so much worse’. Better in the sense of ‘readier’.

Never has there been a better time for people with mental health problems to work with staff (clinicians and support staff alike) to change and improve approaches to mental health and wellbeing. Precisely because things are so bad.

Time To Lay Down Arms

Many staff now suffer their own emotional distress. Nobody is more than one degree of separation from someone who has suffered. Many staff see the paucity of what they can offer more starkly than ever. A new generation of staff want to approach mental health more holistically, but are frustrated by a lack of capacity.

Staff ‘wellbeing’ has become a thing. In the NHS and elsewhere. But mental health awareness and provision of mindfulness sessions is not enough. ‘Resilience’ training is often merely ‘positivity’ exercises in dubious disguise. This won’t cut it.

I know that stigma at work still exists. I have friends and colleagues who will not ‘come out’. For all Prince Harry’s well-meaning forays, people are judged at work. People will not get insurance if they admit to suffering. They will at best, suffer from well-intentioned anxious questioning about whether they are ‘really’ OK.

At worst, rights can be undermined when returning to work. And good employers (yes, there are some) find it hard to reach out to folk who are ill, prevented sometimes by well-meaning, but outdated employment law and occupational health formalities.

Meanwhile, the mental health user movement is well-versed in its campaigning role and has won many important ‘battles’. But, in my opinion, it is time to lay down arms because the ‘enemy’ has changed.

Yes, there are still huge injustices and power issues. But with the rise of ‘patient leadership’ and the emergence of people who want to co-produce solutions, the time is ripe to build spaces for dialogue. Many users are well-aware of the pressures that staff are under – many are only one-degree separated from family members who work in the service. Social media has helped to carve tunnels under the walls where we can meet.

If we don’t break down the tribal skirmishes and move beyond the asylum mentality, rising anger will swamp future best efforts. People with mental health problems and their families will rage about better access, bemoan lack of choice and rally justifiably against punitive in-patient regimes. Institutional defensiveness will rise and more staff will go on sick leave and pretend they have a migraine. And round and round we will go. It’s time to prevent a full on ‘war’.

I have less and less belief in national leadership these days. The change will come from those reading this blog and others at local level who somehow find the time to create space for users and staff to meet as human beings and (crucially) share decision making. But, people in the mental health sector and those with ‘lived experiences’ either side of the wall, can lead the way.

Beyond The Walls

I am not sure precisely what needs to be done – a few learning events that bring staff with ‘lived experiences’ together with service users would be a great start? But hardly sufficient. There are a number of mental health at work initiatives going on. But I don’t yet see these as moving much beyond the individual psychology game.

I bet good stuff is happening though. I am also sure there are people out there way ahead of the game. I would like to learn.

I want to do more. I am frustrated by a friend’s story that his son was not admitted to a hospital where he wanted care. But I don’t think hospitals are great for human beings – never have been. I am frustrated when I hear of a health professional with ‘lived experiences’ being unsure as to how to use their experiences constructively in the work place.

I am frustrated by the way colleagues touch me on the arm and say ‘it’s all very well for you, David, you are professionally at a stage in your career where you can be open’. And then have to crawl back into the darkness.

However, a couple of weeks ago I talked with mental health staff from all over London about my experiences of being a service user and of working in the NHS as a professional who has ‘lived experiences’. Those two experiences are twins.

I am me, whichever side of the wall I am on. I was inspired by the way in which staff openly talked about their own experiences on both sides of the ‘wall’. And by the new solutions when we broke down the walls. Ideas about peer support, community resources, challenging diagnostic labels, taking about safe and trusting relationships rather than about ‘containment’. Sharing power, letting go, yes, staff will need to do that. How money flows with good intentions is also a huge issue.

Whatever the difficulties, it is time to break down the walls of the asylum mentality. Those walls, literally and metaphorically, have never been of much help.

At our next staff conference I will run a session on how we look after ourselves and each other. It will need to be safe and confidential. I want us to address system pressures and our organisational culture – not just promote individual ‘resilience’. I want us to do it together, and break down those damn walls.

We may even do a bit of poetry – the ultimate wall breaker. But that’s another story … or verse.

 

 

© 2017 David Gilbert

If you liked this blog, please have a read of others http://www.futurepatientblog.com

 

 

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

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

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

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

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

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

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

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

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

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

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

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

 

© 2017 David Gilbert

 

As Incredible As Love Is – some winter poems

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

These are recent poems, with a wintry feel.

My Bench Is Misshapen

my bench is misshapen
I cannot sit properly

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

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

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

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

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

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

Something Is Wrong

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

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

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

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

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

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

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

I Don’t Deserve Hot Chocolate

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

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

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

Clearly
For uncle Robin (1929-2006)

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

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

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

Then

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

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

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

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

Hungerford

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

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

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

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

As Incredible As Love Is

The wintry wood is leafless
and furthering heart unprotected

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

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

for overseeing the cold,
a low sun hangs.

We walk from the warm café
reluctantly towards a knowing

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

Winter brings a mastery of task
the inevitable frosted ground

an ushering in of temporality
biology shaken down

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

hard won recognition of our own resilience
seemingly done –

winter knows
that as incredible as love is

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

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

All poems © 2017 David Gilbert

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

 

 

Transitions – Recent Poetry On Resilience

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

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

I hope you like at least one of them.

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


 

I Am Unused To Being Held

 

I am unused to being held
by this untrustworthy air

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

tentatively, every now and again

just in case
the glass this time might disappear

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

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

Until then
I keep enormously still

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

 


 

Attenborough

 

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

 


 

Raving

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

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

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

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

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

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

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

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

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

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

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

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

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


 

Prayer For The Unbeliever

 

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

you whisper, like an unbeliever
in the cold temple:

Good things always end

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

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

will come to be everything.


 

Sure-Footed

 

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

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

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

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


 

Not The Sea

 

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

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

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

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

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


 

Reminder

 

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

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

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

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

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

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

that ever threw itself headlong
onto the hungriest of shores.

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

and those slippery-shaky pebbles
threaten to fell me

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

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


 

Migrant

 

I ring you
and you are a different bird

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

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

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

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

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

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

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

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

Delayed then?
A bullet in the the breast?

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

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


 

Partings

I.

you have spent long minutes studying dissolution

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

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

the slow motion of the accident
revising imaginings of eternity

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

II.

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

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

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

III.

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

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

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

IV.

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

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

 


 

All poems (c) 2017 David Gilbert

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

 

 

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

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

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

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

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

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

Why don’t we get it (1)?

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

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

Prince Harry – thanks, but…

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

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

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

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

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

Why don’t we get it (2)?

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

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

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

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

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

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

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

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

So, why is this an important week again?

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

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

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

Because mental health is where I belong.

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

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

(c) 2017 David Gilbert

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

 

 

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

© 2017 David Gilbert