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

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Patient Leaders – what does that mean?

Why we need Patient Leaders

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

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

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

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

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

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

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

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

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

What is a Patient Leader?

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

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

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

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

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

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

What about roles?

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

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

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

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

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

 

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

And follow me on Twitter @DavidGilbert43

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

© 2017 David Gilbert

 

 

 

The Hope Frog – poems on resilience

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

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

 

  

A Listening

 

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

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

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

 

 

Hope Frog

 

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

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

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

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

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

 

Three Short Dreams of Madness

 

I.

unkind bird
beating its bluish wings
behind evening’s eyelids

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

before it settles
voiceless against
the shush of the deeper wood

 

II.

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

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

 

III.

like flight       without landing
like dawn      without light

like war          without flags
nation             less

 

Four Kinds Of Nothing

 

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

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

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

 

 

Meditation On Resilience

 

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

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

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

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

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

 

 

Words

 

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

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

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

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

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

 

Nocturne

 

I.

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

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

II.

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

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

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

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

III.

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

let dust be blown
across motorways and lanes.

I move from one form
of coldness to another

having lived through speech –
the words for

bringing a bad man down,
fearing for myself.

IV.

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

because everything is beyond recall – insubstantially
ours – unsuspected splendour

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

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

V.

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

 

 Sure-Footed – a song of resilience

 

I have come too far now
to be tentative.

I have long watched
the sure-footed

goat climb the scarred hill
from below,

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

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

I am still unsteady.
But this no longer holds.

 

 

Chinese Lantern

 

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

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

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

 

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

 

 

All poems © 2017 David Gilbert

 

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

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

The neat trick

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

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

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

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

The broken compass

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

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

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

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

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

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

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

The radio

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

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

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

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

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

Diagnosis

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

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

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

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

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

Nearer to reality

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

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

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

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

The Lighthouse

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

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

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

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

I wish you all the best.

 

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

 

© 2017 David Gilbert

 

 

 

 

 

 

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

Better than FUQu

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

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

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

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

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

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

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

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

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

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

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

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

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

And finally…

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

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

 

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

(c) 2017 David Gilbert

 

 

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

The Third Wave

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

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

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

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

Something special going on in Sussex…

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

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

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

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

What we’ve been up to

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

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

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

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

It ain’t perfect

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

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

Learning about relationships

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

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

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

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

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

Things are changing

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

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

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

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

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

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

The Patient Director journey

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

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

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

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

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

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

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

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

Meanwhile at national level

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

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

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

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

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

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

Why do this work?

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

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

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

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

 

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

© 2017 David Gilbert

 

 

What Matters Matters – How my psychiatrist got it right (after so many got it wrong)

Asking ‘What matters to you?’ rather than ‘what’s the matter?’ has become a clever bit of reframing within the health service, intended as a phrase to re-imagine the relationship between healthcare provider and those who use services. And to get us to focus on the real needs and wishes of those with health conditions.

But be careful. Context is all. And the devil is in the detail of how it is asked, who asks it, with what intent and whether there is the capacity to do something about it.

June 1986: Geneva, prior to the World Health Assembly. I was 24, excited and working with a network of professional and patient organisations lobbying for better pharmaceutical use internationally. With my good friend, the late great, Andy Chetley, we had written ‘Problem Drugs’ an activist’s guide to better use of medicines in developing countries. My life was on the up. I was hob-nobbing with delightful Latin Americans, Africans and Asians to help save people from the evil big pharma empire. I knew what mattered to me (having fun) and to the world – cocky, is another word for it.

June 1990: Barnet Psychiatric Unit. Four years into my nightmare psychiatric experiences, after a breakdown in 1987. I was on 24/7 suicide watch, and had consumed many of the medicines I had warned others about. A doctor came into the ward and tugged at the curtain rail. His behaviour was odder than mine. ‘What are you doing? He replied ‘Just checking what matters, that you can’t do anything stupid’.

Removing ligature points as a measure of reducing psychiatric in-patient suicides was ‘hitting targets and missing the point’. Three friends went on to die in different and unmeasured ways. He knew what mattered to me (or so he thought) and for the health service.

I still wonder whether my friends would be alive if he had asked ‘so, what matters to you?’ and me and my three friends could have told him about the unsafe ward environment. Instead they locked the doors at night and made it feel even more like a pressure cooker.

June 1991: Barnet Psychiatric Unit (again). A junior doctor yielded at last to my request for ‘counselling’ and opened a door onto an old linen cupboard. We sat down across ten feet of space. Between my jabber and blabbering, he asked me what mattered most ‘Thanatos or Eros?’. I had no idea what he was talking about. He said, ‘it will be interesting which you will choose: Death or Love’. I later saw him in the canteen reading his ‘Beginners Guide to Psychoanalysis’.

That night, once again, I lay my frenzied head on a nylon pillow ‘property of Napsbury Hospital’ (the old Victorian asylum that surely I was headed for, and where I would languish and die). I thought about what mattered – not much, especially after that appalling encounter.

June 1992: Barnet Psychiatric Unit (still). Somewhere in my physiology I was getting better. I wasn’t feeling better, but I was doing more. Dangerous. I had some energy to walk a few hundred yards further, read one more page in a book, watch TV for a few more minutes before my mind and body crumbled. Dangerous because I projected into a limitless future – If I will be able to do more, yet still feel like hell, what’s the point. I might as well die.

June 1993: Yup, still there. And there was Dr Ikkos. Consultant psychiatrist. “I hear you used to do work in the field of pharmaceutical policy and were a community development activist in developing countries. I see you are a good writer, and used to teach doctors about the side-effects of drugs”. He was talking to the ghost of me. “What matters to you David?”. We listened into the wind, and the sound of cars coming and going in the car park. “I liked that work…” I heard the ghost whisper. “Maybe you can help me” he said. He got what mattered.

September 1993: I walked into Napsbury Hospital with Dr Ikkos to deliver a talk to his medical students on pharmaceutical policy and the benefits and risks of psychotropic medicines (the evidence and my experience). I walked into my place of imagined death.

I got up in front of an audience of future doctors and they listened to what mattered to me – to how the medicines I had taken had ballooned me in size so that I was even more bereft of confidence; to how the environment on the ward was making me feel more unsafe; to how I had lost my identity because I was unable to do what mattered most – write and campaign on health issues.

Sometimes ‘care and treatment’ is about a professional thinking more about life and less about what the ‘service’ can offer. I walked into that vast Victorian asylum as a patient and walked out a professional and a human. Because one doctor had dared to ask ‘what matters’ and, more importantly had listened. And, even more importantly had done something about it.

He had prescribed a treatment that had taken me beyond the citadel walls. And had freed me. Thank you, Dr Ikkos. What you did… mattered.

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

 

© 2017 David Gilbert

 

 

Excluded From Power – a Guest Post by Renza Scibilia

This post was originally published at https://diabetogenic.wordpress.com/about/

I loved this post so much, I decided to re-post it here. You can see why. It followed from a frustrating Twitter dialogue that I was having. Renza has said everything I tried to say…. much better. You can also find Renza (or ‘Diabetogenic’ as she likes to be known, at Twitter on @RenzaS)

Saturday afternoon I was flaked out on the sofa, the Winter sun shining palely through the front window. It had been a cold day and I’d been dealing with an unpleasant and tedious head cold, so I was enjoying the comfort of the house, a dog snoozing on my feet helping to keep me warm.

I was lazily scrolling through some things that I’d missed on Twitter and I stumbled across a protracted twitter exchange that began with this tweet:

Fair point. And reading David Gilbert’s Twitter feed and skimming through his blog, his commitment to patient-led healthcare is strong. He has a lot of experience fighting for the rights of healthcare users to be true partners in the system.

I was interested in the commentary that followed after Partha Kar, an NHS clinical director, quoted the tweet suggesting that things are different in the diabetes world. You can read that thread here.

I struggled with the exchange, feeling a little discomfort when every point made by the original poster was almost dismissed with a ‘but we are doing better’ comment, which completely and utterly missed the point.

I typed a couple of quick responses, deleting all of them. My head was foggy and I was not sure that my thoughts could be condensed in 140 characters or fewer. But I was trying to say that while I actually agree that ‘patients’ do have very limited ‘power’ and are often actively excluded from processes, that isn’t the point. For me, the discomfort was stemming from someone’s personal experiences being rejected by someone who is actually not in the same position – or rather, by someone who holds a position of responsibility in the very system being questioned.

Let’s reframe it this way. There is a gender pay gap that continues in every industry. Women are significantly under-represented as Company Board Directors, as CEOs, and in politics. Health outcomes for women are worse than they are for men. As a woman, I am conscious of the imbalance; I have fought for equality for as long as I can remember; I see the discrimination; I have experienced the discrimination firsthand.

Are there initiatives in place to try to address these gaps? Yep. Is the situation improved today as compared with 100 years ago? Perhaps. Are there men who are fighting for the rights of women? Of course there are.

But does that mean that women who are affected by the imbalance should have their (our) concerns and experiences dismissed because some are ‘trying to make a difference’? Absolutely not.

It is the same in healthcare. Just because there are some dedicated people steadfastly working to support and deliver a more person-centred, inclusive approach with its foundations in true partnership doesn’t mean that the problems are not still there. And it certainly doesn’t mean that we should stop paying attention to those who speak up about the inequality.

If people are feeling excluded – especially people with 30 years of experience in health advocacy, a Twitter following and a blog – we need to believe people are being excluded.

Just as it is not the place for men – even men who might be unequivocally feminist in their words and actions – to tell women that we need not feel discrimination because there are people committed to levelling the playing field, it is not up to HCPs to question the experience of healthcare consumers when we say we have no power and no ability to influence.

For the record, I agree with David’s original tweet. How much power do healthcare consumers really have in shaping healthcare? How much opportunity is there to truly influence the way the system, activities and programs are designed? In fact, how much of the system, and how many of the activities and programs are co-designed?

If we look at diabetes, how many positions are dedicated specifically to people affected by diabetes on Boards, expert reference groups, working parties, organising committees (etc.)? Can you think of an example when the split between HCPs and people with diabetes was equal?

And finally, a thought on language. The word ‘patient’ was used throughout the Twitter discussion and I believe it is problematic. It’s not a word I use; I don’t refer to myself that way. The Diabetes Australia Language Positions Statement advises against the use of the word because it ‘implies the person is a passive recipient of care, rather than an active agent in his or her own self-care’.

In a discussion about people feeling they have no power, using a word that clearly diminishes the role and involvement of the central person in the healthcare equation speaks volumes. At least I think it does.

 

 

Happy Birthday Me – Musings of a Two Year Old Patient Director

I know there are a few other things going on in the world right now.

But have a break… This blog is to share learning with everyone out there. I hope it helps your endeavours to do patient-centred work better.

It is not the most entertaining blog I have written, but it tries to be practical and illustrate some of the pieces of the jigsaw.

I hope also that it persuades you that a Patient Director is crucial to bringing patient-centred work to life – and that a pool of patient partners is also the way to go.

Happy Birthday Me

It’s two years almost to the day since I came into post as Patient Director – a bold experiment on the part of Sussex MSK Partnership.

My job is to ensure that what we do is done ‘with’ patients as partners and that it focuses on what matters to people who use our service. We do this by:
• Gathering and using high quality data to improve what we do – this is sometimes called ‘patient experience’ work
• Working with patients and carers as partners – in co-designing improvement and being part of decision-making
• Making sure this work is part of everyday practice – this is about having the right culture, processes and systems that hard-wire patient and public work.

Key Features of the job are:
• Being at executive level means an ability to join up disparate ‘patient-centred’ activities and to give them a bit of oomph.
• Having had life-changing and long term mental health issues means that I can bring a human element (e.g. vulnerability) into the work and model ‘collaborative leadership’ in order to mirror shared decision-making at senior level – practice what I preach and try to get others to do the same is a less NHS-ease way of saying it!
• I do not represent anyone but try to broker conversations between patients and staff that help both sides and improve what we do and how we do it.

Two years and two nervous breakdowns later, I can see how far we have come. We have focused on getting the foundations right rather than indulging in showy engagement activities that may include people but where information gathered often goes nowhere.

Patients’ experiences work

With our patient experience survey over a year old, we now have useful regular data on what people think about our service. As well as doing the usual corporate reports, we are now providing each of our condition-specific teams with quantitative and qualitative data as to how they are doing.

I will be meeting the clinical leads next month to find out what they are doing with the data and find ways to help them improve based on the data – I also want each multi-disciplinary team (MDT) to have two patient partners on it so we do not look at data only through professional eyes. We are also regularly monitoring the survey comments for actionable issues. We have done great work to improve letters we send to patients and information on the website and other small but significant pieces of work.

Our work on patients experiences has led to us focusing one of our CQUIN improvement projects on ‘supporting our administrative staff’ (call handlers and receptionists) to get even better to what they do. We are bolstering our survey with questions on reception areas and receptionists.

We have also conducted discussions with over 50 members of staff about what we could improve and have been doing some observation work in waiting rooms. All this data will be taken forward to our Patient and Carer Forum next month and we will make the improvements necessary alongside patent partners who are on the project team.

Patients as Partners

We have eight patient and carer partners whose role is not to ‘represent’ but to be partners in improvement and governance work. So far, they have been involved in six substantial projects (on our admin systems, pain services redesign, shared decision making, patient-centred outcomes, fibromyalgia services redesign, developing a welcome pack for partners). They have also advised on various ad-hoc issues, such as improvements to letters and patient information. Their impact has been evaluated as positive – leading to changed relationships and practice, for example.

Our first away day a month or so ago led us to develop together a welcome pack that includes role and person specification, confidentiality agreements and information about the service. We will hold another planning day to develop wider recruitment and training needs. We are working with the Patient Director in the East Partnership to develop more of a joint approach and were shortlisted in the KSS Leadership Awards recently.

The next steps will be to
– Get patient partners into more governance roles, such as MDTs
– Make sure we have access to a wider pool of people who want to be involved (but who may not want to be fully fledged partners)
– Link better to community groups and the wonderful local work of the voluntary sector (I am working closely with our self-management lead, Chloe Stewart).

Patient partners are one element of our patient and public engagement work. The best bit is that clinicians and staff are clamouring for more engagement and more involvement of patient partners. We can’t yet keep up with demand!

There is no shortage of willing folk but we need to route people in better – not easy when I don’t have a formal team, but have to rely on informal influence and relationships.

Meanwhile, unsurprisingly, the patient partners want to go off the beaten track and be involved in stuff that suits their passions and skills rather than be slotted into institutional opportunities. One has started blogging, one led development of the welcome pack, one wants to do more on developing relationships with clinicians, etc.

Hard Wiring 

We are developing processes to support staff to work with patient partners, do involvement work and gather patient experience data. This will include sections in the new staff handbook, induction sessions and ongoing training events. We run a ‘what matters’ informal lunchtime learning session where admin staff get together and review what they have learned recently about patients’ experiences and what we can do to improve.

I am planning to share reflections on my mental health experiences to help raise awareness and tackle stigma in the workplace. This is part of wider work on staff and patient story-telling. Two patient partners led a session with me at our recent staff conference, one of those patient partners is part of our ‘culture club’ that focuses on our culture and values

Perhaps most importantly, we value our patient partners by offering them the NHSE recommended honorarium of 150 pounds per day for involvement in improvement or governance work. One of the keys to embedding this reimbursement policy is to have other project managers commit to matching my central pot of money, so they do not come to me ‘cap in hand’ but build engagement resources into early project planning.

So…

The above does not do justice to the fun we’ve had and all the useful stuff we have done. Or the tears. I’m sure I have forgotten something.

After two years of the PD role, we can look back with some pride as to how far we have come and the main highlights seem to me:
– My relationships with staff and patient partners – The main reason I came back twice from illness was the love and care I felt from people in the organisation and the trusted relationships we have built
– I am pleased that there seems to be a real hunger for the work, and that it seems to be based on a mindset that sees patients as ‘helping’ rather than engagement as a tick-box affair. This ‘positioning’ of patient-focused work is crucial.
– I am glad that we focused on the internal hard stuff – wiring the systems, processes and culture – so as to create the fertile soil for engagement and experience work. That was a gamble that has paid off – I have always been suspicious of creating engagement activities that look good but go nowhere.
– We need to further embed the work and there is a long way to go. But that will be another story…

Get in touch if you want to know more.

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

 

© David Gilbert 2017

Three Poems For London

I can’t do much from this far away. I am a born and bred Londoner in Poland on a writing retreat. I can’t do much at all really. But I hope these words help a little.

One note of explanation, a Pantoum is, originally, a Malaysian form that repeats lines in certain formal patterns. The second line of the first stanza becomes the first line of the second. The fourth line of the first stanza becomes the third line of the second stanza. So on. The last line needs to repeat the first. You can shift words within the repeated lines to some extent.

London, June 2017

It is time to be silent.
The bodies are still warm.
Let the dogs bark on the hillside.

We do not need yet
to be moving on,
fuel our minutes with applause
or flag defiance.

That much will come,
that much will come.
It is time for our child.
It is time to be silent.

For Them This

My town raggedy coalescence of parts, organ spells, bloody scenes and bone blabber Them one another gone and in forever Bolt from all just this horse slow whatever animal you are you’re in you’re on Am only not who I was forget in amber upside-down dismembered ravelling-un un un rumble-tumbling nervy tight and sick with chance and teeth jabber Others sing tough of mighty frost in breasts None now mine Must please must witness terrible stop Everybody fast out of skin, everybody swims in drown Not for me this my town my city rivery shuddery Listen this listen Bones as wands for them this this

Do We Tell Them? A Pantoum

Do we tell them to keep in from the kerb,
still ride South on the Piccadilly Line,
or, that events, dear child, come round-around,
that we too stepped through fear when small?

Let’s still ride South on the Piccadilly Line,
sing a pop-gun lullaby.
We too stepped through fear when small.
Preach of a never beaten heart!

Sing a pop-gun lullaby:
‘Bad men in your sleep won’t come by day’
Preach of a never beaten heart!
But does the little that kept us then, keep us now?

Bad men in their sleep do come by day,
I will not take my children into town.
The little that kept us then won’t keep us now.
I am not brave. Keep in from the kerb.

© David Gilbert, 2017

© David Gilbert, 2017

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Views of a chronic patient

me, mine, and other bits

ramblings on life

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Sharing my poetry

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The Art and Craft of Blogging

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The latest news on WordPress.com and the WordPress community.

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