All posts by davidngilbert

About davidngilbert

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

Just There: More poems through uncertain times

Another rough time. More poems. Mostly written in the gorgeous Trent Park in Enfield. I hope you like them.

My new collection ‘Elephants (Fragile) is out now, published by Cinnamon Books. It has just been longlisted in the Saboteurs Award for Best New Pamphlet.

Signs

I am unsure whether I am well or ill
the morning is suspenseful
with mind having slipped its mooring.
We look together for signs

but ignore
the tree out-wintering its leaves
puffed up sparrows in the sparse branches
or yesterday’s spotlit blossom

and cannot gather in
the touch of friends. Here instead

is a dead fox
by the side of the main road
struck, lifted across the traffic and laid down
by a killer’s gentle hand.

Nevertheless

A thrush, I think, sings from its thicket
and I step out from the path
through churned mud and grass

closing in, now with my glasses on.
It is a thrush. Definitely.
I make out the speckles on its breast.

Probably a song thrush, perhaps
a mistle thrush. Nevertheless
it sings. Not one

melody, but a weave
of clear-throatedness

gathering the disentangling sky
while nearby a silent blackbird looks up
at the hovering sparrow hawk.

The Stone Cat

Yesterday the stone cat was a door stop
and we walked in from the sun

without noticing her. Today
she is inside with the rest of us

who won’t leave for a while.
Miserable weather says one.

Marmalade and tan and lifelike,
white chest and pricked up ears

looking up at the heater.
I try for what she hears:

mutterings of passers by,
curtaining rain on the roof.

I ride out the morning
with tea and milk in a plastic cup

reading the wallcharts about animals:
A squirrel’s nest is a drey.

I now know the difference
between redwing, thrush and fieldfare.

Heaving for definition, certainty
sanctuary, but learning more I hope

from creatures real or otherwise
that don’t say much.

Nice

“Unless you’re wearing really good waterproof boots
the paths can be a bit tricky
but the sun is coming out soon
and that will be nice

I’ve got daffodils coming out this year
and that will be nice

We went to see Paddington last week
and that was really nice.

I have to say
my daughter is coming over from the States in June
and that will be nice too”

Another Small Bird

It is a surprise to feel the feathery weight
of another small bird
landed on my narrowed shoulder.

It has come a long way
but from where?

I am unused to a chirrup.
A pathetic little sound
in the scheme of what is happening.

It takes a while to attune. Longer even
than the curved spine to straighten

or shoulder to fill out
so that it can settle to its song. Longer
than an overture to intuit, write
then orchestrate, let alone to air

and how to discern
a note within the bedlam?

Yet this small bird waits – being
the smallest of its kind, hardly
distinguishable from the rest.

This Morning Forever

The gap-toothed girl in red shoes and pink helmet
pumps her scooter down the long path
swerving through dogs and oncoming joggers
ponytail flying loosed from its ribbons
tongue sticking out like a lollipop

then way way off she stops and laughs
out loud for nobody but herself
this morning forever the universe
bright stars blazing on her blue jacket
and a Yorkshire Terrier rolls in the grass

Acceptance

I have grown tired of thought
and with eyes lowered
do not look ahead.

I have no choice but to fall
in love with the ground
more than with what

may be above. And the path here
is no longer a path
but mere stone after stone

and it is hard
to fall in love with stone.

Just There

the carp hangs in the balance of its water
allowing itself to rise

the flautist – a Poulenc sonata –
careful not to force the breath beyond its register
as if the instrument was whispering in return
hold back hold back a little
and the music will come

between presence and intention

the faltering foal
a leaf about to fall
feather in the palm

thought drifting and untethered

noticing the mist for the first time
layering the dawn field
if I could

hold myself just there
for hope to arrive of itself

A child reaches out for the rain

collecting all the droplets
in his cupped palms

brimful of hope by this dismal path,
work that takes all afternoon

and when blackbirds announce the dusk
he would pour these tears
into his little purple bag

then shake them up.

He will be
my night’s magician
carrying carrying while I sleep.

The Strings

These bouts seem always to end in a room
with a slide of rain down windows
surrounded by grey and someone
close to being me again
struck by violin. This time
the G Major Sonata by Brahms
(last time Haydn) and being able – small things –
to listen. To hear
then a
curled up cat on this evening’s bed
a book, a breath, the radio
this same warm fall of tears and –
dear god or whatever, never again – the strings:
their twisting, near ache and rest.

If you liked these poems, there are more at http://www.futurepatientblog.com

All poems © 2018 David Gilbert

 

 

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A personal message to friends and colleagues

I decided to send this note to everyone at Sussex MSK Partnership (central) where I work. A tiny contribution to challenging stigma.

—-

Dear friends and colleagues

This is to let you know that I am going through a bad bout of anxiety and depression.

It may be due to withdrawal effects as I tried to come off my meds. It is proving another very hard time.

I want at least to break the stigma by saying this because I know a lot of others at work who sometimes go through similar problems.

And I don’t think in our society we talk about it enough or support each other adequately – there is still a taboo and people do not know how to talk about it. We call it stress at best. And it is still regarded as a weakness – more so than physical health problems. I worry a lot about perceptions people have of my capability when I also know I am damn good at my job and have lots of talents. As everyone with mental health issues does too – sometimes I think we are just more sensitive to life. We have gifts – but also burdens.

I have managed to write about it a bit here https://futurepatientblog.com/2018/03/26/abg-three-ways-i-try-to-cope/ and have managed to carry on working a bit every day. But it’s not easy

At the moment, I will need to work from home and do as much as I can. I have several reports to write and will do my utmost to hit the correct deadlines.

You are welcome to try and call me or email me. It is good to feel connected. But I may be slow in response.

It’s often hard to know what to say to someone in emotional distress. But I won’t take offence to things if it’s an awkward conversation. I don’t want to be treated with kid gloves. Or be patronised! 🙂 Just with a bit of care and consideration. As you would.

And please feel free to share this with others.

Mental health problems are horrible. Let’s talk about them if we need to and look after ourselves and each other.

I hope this message finds you well. Let’s be gentle and kind to ourselves and others.

Best wishes

David

ABG – Three Ways I Try To Cope

I am back in my healing place, by the fountain at Trent Park Café. I am not sure what’s happening with my mind again. I am a bit fragile. So this may not be the most cogent thing I’ve ever written.

This has been a time of letting go. The kids are getting older and the house feels lonely sometimes. I am waiting on news of a project. Depression and sense of profound meaninglessness hover.

——————–

I Have Never

Sometimes when I can’t sleep
I watch a web cam of a bald eagle on her nest in the rain

and my intention in those closeted hours
while being steadied
by that primeval harbouring of unhatched eggs

is always to be kinder. I have never
been kind enough.

The sadness is in seeing this so startlingly late
then having to be woken
night after night

to be reminded
that true kindness has wings.

——————

I came down from one of my two anti-depressants a while back, so perhaps there is some sort of ‘withdrawal’ going on. Add to this, some deep insecurities playing out in some of my work, and a few other bits n’pieces. Not terrible stuff.

I am feeling quite ’empty’ (does anyone get that feeling of being see-through – it is both enlightening and can be a bit freaky). In that emptiness, there is a luminescent quality of awareness, which is actually quite ‘interesting’ but I am perhaps over-sensitive and fears rise. I am raw.

Plus – this is the one that many people who have suffered from mental health problems will get: I am fearful of what my mind might do! The brain is scared of the brain’s activities.

When your mind has fucked you up big time in the past, it is easy to fall prey to a gnawing sense of impending chaos. “Oh, god, last time this feeling was around, I went…. ” Agh!

Ironically, the vigilance induces the very fear that you are wanting to protect yourself from. Catch 22 – the bloody brain. When you have seldom felt safe, when you are trying to build that sense of safety for yourself (even at 55 years old FFS!), then it is not easy to validate one’s feelings or trust the quieter voice in your head, hard even to put one foot in front of the other. But you do. And you have to.

——————–

Once

I felt safe once
in the warm back seat of our blue Cortina

on a monotonous four and a half hour
pre-dawn journey to Newton Abbot.

I was half asleep all the way.
We stopped in a lay-by

for jam sandwiches on sliced white bread
smokey bacon crisps and quartered apples

and a pink sky bathed the empty A31.
We were headed for the sea.

———————

So, I just wanted to put my coping strategies out there, in case they help others. I am hoping that these bring me through. Like they did the last two times I have been ‘unwell’ over the last couple of years.

I also need to be ready for a conference on Wednesday on ‘rehumanising health care’ which is all about vulnerability – oh, irony! So, these had better bloody work or I’m in shtuck.

1. Act As If – I don’t really get psychosynthesis but I once had a therapist who recommended a book by Assagioli and this phrase stuck. It’s a bit like the ‘feel the fear and do it anyway’.

It does not mean do everything, and push yourself, or distract yourself through doing. It is more about putting one foot in front of the other – taking actions, small as you like – and trusting that the lagging negative feelings (fear, anxiety, mental patterns, unhappiness) will shift eventually following a period of constructive functioning and behaviour.

Not deep, not Freudian, not anything really. But has worked for me in the past. ‘This too shall pass’ is an underpinning motto here I think.

2. Breath and Body – I practice mindfulness, and because I am often stuck in my head (my thoughts are blessing and curse) I try to come back into my body.

This may not ‘help’ immediately but is grounding. I can cope more with the ‘emptiness’ (hard to explain) when I do this. When my brain is struggling to ‘explain’ everything (and failing to get an anchor), this can help me be more still.

From here I can also be aware of the outside world and take in nature. Softening the eyes and gaze has been another recent addition to my fragile armoury – this can also relax my breathing funnily enough.

3. Be Gentle – I was going to say ‘compassion’ but that seems over-used. Being gentle gets me to a sense of the better attitude towards myself (and others).

Part of my brain can articulate or shape a feeling of gentleness these days. But it is still a fragile voice because words and thoughts fly away. But some part of us – even for those of us who have never felt safe – ‘knows’. I think (!?) practicing the art of gentleness over a course of time can help embed that positive habit of mind.

This includes voicing consciously so as to manifest that sensibility – ‘you’re doing OK David, you’ve had a lot on your plate, etc etc’ – that tone can build from a trickle to a river I hope.

We spend so much time listening to the scarey voices – why do they get all the airtime? Also take yourself away from too much stimulus (that bloody phone) – towards birds, trees, rivers…

—————–

Oak

I am more tired of myself than you would understand
I walk into the woods with my eyes closed
tired of thought tired of storm

of holding myself between reaching and falling
of talking and time and childish sound
I want to lie down

softening damp mossy gnarled
encrusted by lichen surrounded by flies
a log within thorns of thickening bramble

——————

4. One more – eat, drink, move and rest properly, take care of the physiology as much as you can.

That’s it for now. Time to get back to that fountain and perhaps some poetry (something else that helps).

 

 

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

© 2018 David Gilbert

 

 

Changing The Story – personal and political reflections on letting go

We carry stories about ourselves. But we should let them go when they no longer serve. Letting go is hard for me.

Coming off my twitter addiction, saying goodbye to an account with 5,000 followers where I was able to pontificate every day was an ‘interesting’ challenge. And not without its withdrawal effects.

But I have vowed to look after my own health and energies better this year. That means letting go of the entanglements, triggering and casual cynicism of social media.

Meanwhile, the background narrative to my life is about me being an ‘outsider’. This stems from being a younger brother, having a Jewish background perhaps, anger at injustice, my early career as an activist and mental health problems.

This narrative has served my passion for a cause, like patient leadership. But, as depicted in the film Three Billboards, ‘not everyone is the enemy’. My anger has been burning me up slowly and can prevent a generosity of spirit that is growing stronger as I get older. I need to let go of the old story. I want to be more healing than divisive.

This is showing in my poetry, the ultimate enabler of a different lens. This for example:

This story of injury

has bled long. I have walked it
into a path
across a bright field

You can see it from above
crimson wide solidified and trailing
through the stolid woods

Yes I was good serious and determined
so much so that
others tracked mine

But I cannot remember the cut
and must take back
my steps

to find and follow another’s

I have been trying to support friends who have been unwell. Many of them are also people who have taken up roles trying to change the healthcare system. And I have been wondering again how best we look after ourselves while doing this difficult work.

I continue to see that people in healthcare leadership are, well, ‘normal’ people who make erroneous assumptions about patients and citizens. But I don’t know whether I can be bothered any more to raise my head above the parapet. I am tired and want to let go.

Nationally, instead of the NHS crisis leading to a reassessment of how we plan, design and deliver healthcare with patients and communities, it is leading to a hunkering down. There is a rearguard action to preserve the status quo and a risk-averse national leadership ill-equipped to adapt and take advantage of what ‘outsiders’ can bring. Maybe there is fear of losing power.

Instead of ‘saving the NHS’ through bold community investment and the opportunities inherent in finding new solutions with patients, communities and citizens, the NHS is behaving like a wounded animal. And patient leadership – like many bright ideas – seems like it is dying before it is born. The NHS won’t let go. I have been thinking maybe my ideas, our ideas, have failed. So, maybe I should let go on this level too.

However, perhaps I am wrong to have equated my personal need to let go, with a political assumption that patient leadership is dead. I need to disentangle the narratives – personal and professional.

Rosabeth Moss Kanter says: “Everything can look like a failure in the middle” and points out that it takes 17 years for innovation to take root in healthcare. My guess is that if initiated by patients/users, communities and citizens it will take even longer!

So, with the sense that I may be wrong about the patient leadership thing – that we are still at the beginning of the journey, I sent an email to over a dozen of my ‘patient leader friends’ asking whether we should get together informally again. I am delighted by the response. Most want to crack on – and they seem to have no less enthusiasm for the cause than they have done previously.

All we need is space to come together, with gossip, whinging, cake and a sense of belonging. But I have let go of wanting to organise it all 

My path is set to change in the next year – it may include both a shift towards mental health and/or towards arts and health. So, yes I’ve let go in some ways. But whatever the direction, the path is still one that is about seeing things in new ways, using creativity and connection, fostering healing relationships and equalising power.

Heifetz, who talks about adaptive leadership says that it “requires us to hear the song beneath the words”.

So, let’s change the story, rather than negate everything about it. And, here’s a poem on that too. Let go when you need to. Change the story if it does not serve. Be gentle.

His Special Twice

Amongst your favourite ghosts
there is one
with bright blue holes for eyes
now no taller than you are.

He says: I was with you the day
Pele almost scored
from the halfway line, his family
golden and shimmering on your new colour TV.

I saw all that was set and said
at the turquoise kitchen table
and loved it when the budgerigar
sat on your shoulder.

I waited while Pink Shield Stamps,
toys in cereal packets, Hillman Imps,
milk floats and sad rag n’ bone man
disappeared. I wasn’t sure

we would bear
your granny going slowly demented
or when you did your back in
or your mum and dad divorced

but remember Grandpa Joe
striding down the garden path
ringing the door bell his special twice?
The second ring was mine.

 

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

© 2018 David Gilbert

 

The Fuckfulness Of Life – recent poems

His Special Twice

Amongst your favourite ghosts
there is one
with bright blue holes for eyes
now no taller than you are.

He says: I was with you the day
Pele almost scored
from the halfway line, his family
golden and shimmering on your new colour TV.

I saw all that was set and said
at the turquoise kitchen table
and loved it when the budgerigar
sat on your shoulder.

I waited while Pink Shield Stamps,
toys in cereal packets, Hillman Imps,
milk floats and rag n’ bone man
disappeared. I wasn’t sure

we would bear
your granny going slowly demented
or when you did your back in
or your mum and dad divorced

but remember Grandpa Joe
striding down the garden path
ringing the door bell his special twice?
The second ring was mine.

You Continue To Ask The Hardest Questions

You continue to ask
the hardest questions of poor weather
but the snow is indecisive

the cold draws down unknowing
feathering the red watering can
with irresolute flakes

greying the sun. We are neither
within a passing flurry or clear
of a closeting so may

enter night still uncertain
the traffic moored by morning or wake
to blue-draw the curtains

I have seen the nature of snow
put paid to intent, its heavenly wanderings
and meandering footfalls

no arbiter between
the questioning bite of an unyielding wind
and a mind as yet unmade

Bear Country

We pegged the tent
near the inevitably named
Last Chance Creek

beneath an overspill of yellow stars
beginning to break down
our elements.

I couldn’t eat or sleep.
And I’m sorry
I couldn’t carry on

making much sense.
You loved me that night
but not in the morning

when I said there’s something
ripping me apart
with a bear’s ferocity.

And you rolled a cigarette
with your back to me
while I packed.

Because We Love Birds

One day, he brought down the bird table,
the next, it must have been him too
who had taken it away

though none of the regulars could vouch for it
or provide a plausible reason why
and the CCTV unfortunately

had been broken for a while.
But Ozzie bought a better one from B&Q
and it took just under a week

for the robin to return.
Because we love birds.
We heard that the Anti-Social Behaviour Unit

had moved the poor man on, god knows where
and we spent an hour one morning
moaning about the council, police and NHS

who should have done more.
And later when they dredged the lake
on the far side of the park

while building luxury apartments
they found the old one head down
pole sticking up from the water.

The Heath Extension

That night, just after the nurse told me
to go get some sleep, that there was
nothing much more to be done

that he’d still be there
when I came back in the morning,

the fire alarm rang for a minute or so
and we stood looking at each other for a moment
neither of us knowing what to do.

I wanted to make a joke
about anything, maybe even about waking the dead.

Downstairs, I slipped into the closed cafeteria
still smelling of fish and chips and baked beans
and the shadowy vending machine spilled out
two Kit Kats for the price of one.

And on the circuitous route home
needing hugely to stray awhile
framing the stars through the smeared windscreen
I stopped off by the Heath Extension

where you took me to play football
in my new Leeds Utd kit on Sunday afternoons

then out of the brittle dark, sprang
a small fox and we both froze
looking at each other for a moment, alone.

Nice

We stayed awake all night
me listening, sweet to stories
of your evil
but well-bedded boyfriend

the habitual charm at my neck
tightening like a garrotte

and in the idiot morning
you smiling at last, weepy and still
fully clothed, declaring
again and again that I must
be the all time nicest of boys.

I have always hated how
nice I’ve remained fully clothed
in the face of the fuckfulness of life.

All poems (c) 2018 David Gilbert

My new collection, Elephants (Fragile) is out now, published by Cinnamon Press.

 

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

 

 

 

 

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