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

Don’t Be Scared To Show You Care – how to respond to a loved one with mental health problems

A friend asked on twitter, is it OK to wish you better? I replied ‘why not’?

It reminded me of the psychiatric ward many years ago. There were few visitors. And nobody brought flowers. I had one ‘get well’ card from my mum until it got ripped up by another inmate.

You who do not know mental pain, but mean well (and nowadays that is most people I believe) tend to stay wary of how best to show your care for those going through emotional hell.

Why?

Is it because you are worried, lest our emotional volatility erupts in ways unintended, and your good intentions are misinterpreted. Are you worried more about your own feelings, of being misunderstood? If so, get over it. But I am not sure that is it.

Is it concern that you may cause additional offence? How? By being patronising somehow? Getting closer here I think…

Perhaps a bland set of phrases (they are a bit cliched aren’t they? Get Well or I Hope You Feel Better Soon. Thinking Of You) cannot account for the nuances of emotional suffering.

Are flowers too crude a gesture? Do they intimate too much colour? Too much hope?

Thinking of ‘get well’ cards. I look forward to the day when some insightful artist takes to the page and I get a card saying ‘Get well get well get well from your OCD’… or not. Is that the point again? That it is too close to offence? That because many do not understand the nature of mental suffering then the fine line between humour and offence is too risky? Maybe.

When I was ill a couple of years ago, my boss and I did not talk about whether it was OK to disclose to others that I was unwell and why. As a result, I got a card signed ‘From all of us’. This exacerbated my feelings of being isolated. But how were they to know? They were doing their best.

In some ways, we who are suffering need to make it OK for others to show they care – this seems a bit weird and a lot of work when we are already going through so much pain. But the consequence of not doing so may be….

(silence)

It is my own personal opinion (everyone is different) but I would prefer you to say something to show you care, than be silent. For silence exacerbates the gulf I feel between my feelings of badness and your seeming world of normaility. I may not reply (give me time, I do need rest perhaps) but you will have been heard.

Caring is always a tentative craft, balancing the encouragement with the reassurance, the gentleness of advice to rest and take it easy, with the exhortations not to lose hope for the future. Carers are careful not to add insult to injury, literally. In mental health, that anxiety about offence may be more top of mind (sic).

(By the way: The phrases to avoid for someone whose brain, mind or feelings are clouded in black is anything to do with witnessing colour – in other words, I will actually bite you in the balls, or wherever, if you say anything like ‘cheer up, or ‘be positive’. There are other things you can say surely? I have received wonderful twitter messages, but the only one I have not ‘liked’ is one that has told me ‘how wonderful the world is if only I could see it’. Er. No. Blocked)

During my recent bout of awfulness, I made a point of writing a note to colleagues that it was OK, it was more than OK, to get in touch, to ask about things, to show they cared. And last week, I got a card that made me teary, signed by everybody. I didn’t feel quite so alone.

So, if you are worried about a loved one who has mental health problems… don’t be scared to show you care. Send a card, send flowers, send a little of what is in your heart. You may get it wrong. And if you do, use it to explore what it is you can do or say next time that helps. But in fact, your caring may help do a tiny bit to prevent a next time.

And if you have any other ideas as to what gets in the way of being able to say you care, let me know.

NB. I have written several blogs recently on trying to come through mental health problems. This was the previous one… about ‘refinding balance’ and what I have learned about tactics for ‘recovery’. I also write poetry and have said more in poems about my ‘journey’ than in prose. You may like these poems (or not!)

 

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

© 2018 David Gilbert

 

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The Re-Balancing Act – recent mental health problems, ‘recovery’ and living in a mad world

For the first time in three weeks I have found a small oasis of peace in my head. And I am grateful. I can sit in this chair and watch the small pink-blossomed tree under the street lights and listen – truly listen – to the quietness of the house. Albeit punctuated by the ad-hoc screech of teens.

I have begun to come through a third bout of mental health problems in three years – more specifically, repetitive disturbing intrusive thoughts (perhaps a form of OCD). These return bouts of mental unwellness have mirrored my period of time as Patient Director, and the first one at least was due to work stress.

During the last three weeks, I have found myself trying to fend off feelings of deep emptiness (as if I did not exist – an ‘unbearable lightness of being’) and of circuitous horrible and intrusive thoughts (the pain of thinking). I have wanted to both escape the silence and the noise – mostly to escape ‘myself’.

The only way through for me is always a deeper and deeper acceptance of the emptiness or the almost paralysing thoughts. In a way, my ‘illness’ seems only to be countered by acceptance of it. It is the fear of the ‘emptiness’ and fear of the ‘thoughts’ that sustains the distress.

I have got through (at the moment) by focusing on
– Acting as if (continuing to find ways to function, despite my mind and body screaming at me that it is all futile)
– Coming continually into my body through using mindfulness techniques (I have also been finding ways to relax my eyes as much as possible – the eyes have a huge part to play in anxiety)
– Being as gentle at a practical level as I can (finding the balance between rest and activity)

NB. The drugs help a bit too!

I offer the above for those that may find that three-way approach useful. It may not be. But you never know.

So now what?

So, now, as I reach the age of 56, I need to think carefully about how to look after myself. As a professional about where I can make most difference – hopefully one day in mental health and through my writing. As a father, I am thinking more of my children’s future than my own.

I have emerged into my own fragile state of calmness as the world descends into its own calamitous breakdown. I do not often pontificate about the state of humanity, but I think the current global volatility and widespread nature of disturbed and polarised thinking, point the finger at an aberrant species suffering from a collective nervous breakdown.

I believe there are strong parallels between our individual and collective mental health. And that our emotional and mental wellbeing is the singular most pressing problem of our time; that it lies behind all other causes of strife.

We need to refind our balance (which includes equalising power, not just silly rhetoric about compassion or positivity). We need to find it all levels – within ourselves, between mind and body, between our thinking and our emotions, between each other as individuals and at global systemic level.

We are – all of us – seriously off kilter. Unable to sit in a room quietly. Unable to resist addictions – whether it be stuffing ourselves with food and drugs to stave off feelings of emptiness; or grazing across social media trying to stimulate the ‘enjoyment’ buttons for fear of lapsing into a vacuum of emotion; filling ourselves with ideologies or beliefs that provide a temporary illusion of rightness and self-serving identity to fend off our own sense of nothingness.

Whatever it is, we continually try to fill ourselves with something to fight off our own real sense of who we are – fragile concoctions of swirling sensations and thought overlaying some weird and very quiet life-force.

We are fearful of just being. Just as I have been for the past three weeks. We fend off fear. And in so doing serve to create it. This is as true for the world at the moment as for us as individuals. All of us, I believe, have a duty not merely to be ‘kind’ or ‘compassionate’ or whatever the current fashionable term is, but to find balance.

This may not be the most coherent of polemics. And I may be straying too far in my reach. But as I watch the tree with pink blossom under the street light, I know the above to be ‘true’ in the core of my being.

Be gentle and look after yourself and loved ones – and even perhaps those you don’t.

© 2018 David Gilbert

 

 

A Little More…. (another note to colleagues about mental health and unwellness)

As some of you know, I wrote to my colleagues at the Sussex MSK Partnership (Central) about what I am going through. I received a lot of messages of love and support in return. I have also received a lot of those things from readers of my blog. Thank you.

I have followed this up with another short note this morning. I hope by posting this as a blog again, I can encourage a little more gentleness, a little more hope, a little more understanding. And a little less stigma.

___

Dear all

Thank you for all your kind messages of care and support. Not only do they help me, but I think the dialogue continues to break down the stigma of mental health problems.

It may not be as easy to reach out to a colleague in mental pain as it is to do so for someone in physical pain – why, I am still unsure.

I am slowly getting better, I think, but like anyone who is ill, it goes up and down. And because the brain is unreliable, it is hard to judge.

But I hope to be back in the office next week. I have been kindly supported to continue to work from home.

If anyone is interested, I write poetry, and this has helped a little too. You can find recent ones here

I have added names on to this list that were not included previously. Do feel free to pass this and the original message on.

And do stay in touch. It makes things less lonely – which is also one of the consequences, of mental health problems themselves, of people’s uncertain and anxious responses and the stigma.

Best wishes to all you good people

David


 

More blog posts at http://www.futurepatientblog.com

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

 

 

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