Resilience – recent poetry

For those who like poetry, maybe even for those who don’t or are wary. Give these a try. You just never know.

If you are viewing these on a smart phone, the line action may be astray.

 

Resilience 1

When still within the story
or the unsteadying silence

or when at best
the only sound is boundless
time – its headlong whoosh – your bare foot on the floor
to begin again this long struck morning

the sky as unsure of itself as it was
above that day of fog and ocean, formless
yet skin tight round this land work of breath
or as it will be later – the storm’s eye –

restless cream and bestial mauve you take up
the shaky pen, unready for the next
line

The Wren

 

The wren
left the branch

like death – altogether lighter –
delighted to let go,

gravity become so
cumbersome.

Entering the trees,
I cannot see her now

on this unfortunate earth
as the foot stalls,

but somehow know
that the tiny black

blazing eye
follows me.

Pineapple

 

The sound of thought had died down
while he was eating tinned pineapple chunks
in their own syrup on his bed with a cake fork.

He knew that a spot of light rain was due
was glad he didn’t need to fetch more bread or milk.
It was always like this at the end of the season.

The tourists had fled and chip shops boarded up.
He would see his old mate pissing against a wall
and not know what to say to make it better

for either of them. If he had a dog, perhaps
he’d get more exercise, but middle age spread
was the least of his worries. He could end it

in The Netherlands, but knew he wasn’t such a dramatist.
He’d probably see things out closer to home,
a bit of Classic FM, pineapple (in water

– his tongue tingled. Maybe allergic)
view of the ocean. He was OK. Sometimes,
it was nice just to sit and not think too much.

The Plans I Had

 

I would build a rock pool
to see me through,
a smoothing waterfall
dedicated to the hours

where I would entertain
long lost cousins
with stories of how
mere words freeze time.

Stilled carp and lily pads,
definitely a bird table
with a pair of sprightly goldfinches
at a worn down fat ball,

my dad with his shirt off,
two-finger typing at his Smith-Corona
me and mum splitting pea pods,
tight in our summer corner.

I will become a footballer.
The house remain unsold.
I will not need to write
or build a rock pool.

 

A Death

 

It had carried us eighty thousand miles.
On our way to the End Of The Road festival
we had come to a halt by a rape seed field
after a seismic shift in engine temperature
and the arrow’s whizz around the gauge’s arc,
the volcanic bonnet spewing hot ferocious
yellow jets, everyone at me screaming stop,
then panicky behind the low and puny metal fence
artics bombing at us blind around the curve
waiting for somebody to answer the damn phone
hook us up to some local mechanical god
for life support, miraculous revival
or the heartless, now seemingly inevitable

putting down. Now we wait, late
aggrieved, bereaved in Enterprise Car Rental
near Poundbury, classic FM, paperwork done
with surprisingly good, complimentary coffee
waving to our tied-down, still hissy heap
on the back of Billy’s monstrous truck,
accelerating back up to the A35.
One of the kids wants a coke, the other
to be very very sick. I want bed,
weepy Susan a couple of photographs
of our never to be seen again (whisper it
‘dead’) 1999 Toyota Corolla
1.6 GLS silver (grey) automatic.

Resilience 2

 

Out of Ferny Hill along the A111
as it nears the roar of the M25
there are three hollowed out abandoned cars
one grey, one blue, one silver.

And you know what they say about abandoned cars.
And you know what abandoned cars mean, right?

They mean
the chance of again
dauntless blue rhythm from the songster’s throat,
a man who does something finally of consequence,
snowdrops that covered the battlefield
once Spring melted the snow.
The knife in the hand, dropped.
Sign at the edge of the bluebell meadow
that tells of ‘keep off’ and how

you’ve had it with that.
That’s what abandoned cars mean.
Don’t let anyone tell you different.

Avocet

 

I used to be able to sit
in damp wellies and blue kagool
under the rain-beaten corrugated iron roof
of a low cold hide scanning the Broads.

I used to be able to wait
for the waders to come sift at low tide,
their scuttle and wash of greys and browns,
dreams of Bellamy and Attenborough.

I used to be able to listen
for the curlew’s cry, tick off
the dunlin, knot and sanderling
in our tatty Observer Book of Birds.

I used to be able to see
through thickening hours of mist,
thermos and jam sandwiches without crusts
softening crisps on the tongue so as not to scrunch.

I used to be able to watch
the tide crawl back across the marsh,
risen flocks against the low red sun
and at last, an avocet.

 

Thin

Poets are supposed to be thin, as though the words they use feed off their bodies; their bodies shrink a few centimetres every day under the effects of all the images and ideas that fall on their heads. From Gertrude. By Hassan Namji.

 

I have eaten, but my metabolism is against me,
used to be good
at woodwork,

am not where I ought to be
on the scale,

dream of a salon
next to a kitchen
next to a couch
and looming gargantuan therapist,

wake, unblinking
to explosions of dust.

It is not just us.
Flowers grow weightless.
The room too small to house our travelings.
Moon heavy. Teapots gaseous.

Ingenious doctors are either
worried or insufficiently curious.

Scans reveal echoing beams
through and back and through
the walls of the machine,
me, a corona.

They need cause
though I may be useful
for the future of education.

My sister told me it would be so, then left me alone.
Nobody important visits.

Dog only knows – he is as thin as me.
We hover together across silent parks
distill, evaporate, become steam
drifting, hallelujah, over grass.

If you liked these poems, or even if you did not, try some of my other blogs about: healthcare, mental health, patient and public engagement, or maybe more poetry?

© David Gilbert, 2017

It’s Not All About You – why we need new stories about healthcare

Our stories about healthcare sustain the status quo.

We like our stories. Neat beginning, a little bit of mess in the middle and a coming through to a tidy end.

We like them now in healthcare. The pathway, the journey… those gentle phrases suggestive of our story being akin to a stroll through a meadow, rather than traversing Hanger Lane Gyratory System.

Narratives are common place in medicine. Story-telling has become part of the improvement methodologist’s toolkit. Stories have become ‘embedded’ in healthcare practice, some might say (and I would like to suggest) ‘co-opted’ by institutional forces.

It’s the way we tell ‘em…

Those who plan and design healthcare ‘pathways’ assemble in rooms to try to focus on ‘what matters’. Those in the room become both the tellers of the story and the protagonists. They craft a story that is inevitably and unintentionally, largely about themselves.

The centre of the story becomes the institutional citadel. It is a narrative about punctuated periods of crisis when outsiders (patients) get visibly ill and come seeking succour and ‘professional’ help. It is a tale of access to the technology of wonderment and diagnosis and the wizardry of healers at dramatic moments. Hospitals, GP surgeries, pills and potions, powerful sorcery.

If patients or carers are allowed into the secret room where stories are told and written, they can and often do, shift the tale. They will articulate those moments of sheer terror, the consequences of illness on identity, the wobbly quest for certainty, and hopelessness when met with deeper questions and prolongation of angst, the fear of power, long waits in the valleys of unreason, travails that only momentarily meet the therapeutic masters.

The locations of darkness lie outside the city walls.

Our ordinary story

My story began at school, continued at college and work. The characters are mostly friends who could not cope, mum and dad baffled by the fall from grace, brothers reduced from gods to bit parts, colleagues who laughed at, or cried with me. And many who simply disappeared.

It was about early fears that were not requited. Forgiveness not granted. Gentleness towards myself and others unable to be given. Long days and nights. My brain an enemy. My stomach and heart cut off. Like so many others. This story is not unusual. It happened in bedrooms, kitchens, playgrounds, swimming pools, shopping centres, gardens, and many many winding streets (literally and metaphorically).

And when it all became too much. When my suffering erupted and was noticed by societal guardians, I walked into the gates of hell. The psychiatric system.

And within the citadels themselves, it wasn’t always the doctors or nurses that I recall – it was the porters, the cleaners, the receptionists… who touched me.

It wasn’t so much the psych unit that helped heal me. It was the hospital canteen. It was the local Chinese takeaway. The park. Those places where I began to re-learn liberation and autonomy. Even the church I strolled into once where I met someone who became my dearest friend. The tale of coming again to belong. The stories took place elsewhere. Often far away from the ward and GP surgery.

Yes, yes, yes… And

Yes, the clinicians needed (and need) to be able to listen, to communicate, to explain, to advise, to support.

But let us not continue to collude in the wrong story. They have their walk on parts at significant moments of emotional drama – that is why they are remembered. Because our brains are wired to respond emotionally and rekindle those moments of emotion when re-telling stories. We are Dorothy. The story lies on the yellow brick road mostly.

And yes, relationships with clinicians and staff are critical. And yes, all professionals need to learn the art of walking alongside us. But it’s not all about them. In fact, it’s often not about them at all.

However, when I tell my story in healthcare circles, all most people want to hear is about the contact and relationships I have with doctors or clinicians. Or about my ‘experience’ in a healthcare setting. And often that is the bit of the story I tell. Why?

Partly, I suggest, is that it is uncomfortable to realise that those who usually gather in improvement circles do not have the power and influence to change things as they might. They talk about ‘what matters’. But if ‘what matters’ is my contact with friends, then they may be unable to divert resources towards those avenues, even if they want to.

Maybe it’s about fear? About their own vulnerability? About their loss of authority? About them being reduced to signposts to healing sources, rather than fonts of wisdom and knowledge.

Blimey – if I had been trained long long hours to think I was part of an elite, suffered through years of being treated badly as a junior doc, pumped full of amazing arcane knowledge, got to wear the white robe, then I would want to feel I could heal and really make that crucial difference. And in many cases, they do…. But it’s only part of the story.

Are people afraid that if I tell a deeper, wider, bigger story, that the importance of doctors, hospitals and drugs will be demeaned? That the natural corollary of my story is to pump resources into schools, parks, local spiritual enclaves, helping friends who can listen better, helping my poor mum and dad to cope? Who might be the losers?

The stories we tell about ourselves give us meaning. And sustain us. Or can betray us – I have learned recently that my story about my healing from mental health problems has been wrong all along. I did not ‘recover’. I learned to adjust for a while before succumbing again. I need to learn to ‘live with’. That is hard to tell myself and hear. My new story means I have lost certainty and am vulnerable to further periods of unwellness, god forbid. I have lost something in the art of re-telling. And/or maybe I am still within a story that is perhaps never-ending.

Telling the wrong story?

When it comes to healthcare, perhaps we are all telling the wrong story. Perhaps we are all prone to telling and recasting the story from the wrong end of the lens. If we continue to do so, not only will we continue to uphold doctors, pills and hospitals as the overly-powerful actors that they are. But we also risk maintaining a story of healthcare that is not fit for purpose in a cash-strapped age – that reduces patients to the bit parts rather than the main protagonists.

If we want patients ‘at the centre’ then we need to retell our stories about health and healthcare. There is a risk that story-telling – the meta-story of healthcare – is being co-opted by those who sustain power? Or maybe I am telling it wrong?

What’s your story?

(c) David Gilbert, 2017

If you liked this blog, you can find 60 or so more at http://www.futurepatientblog.com

You Who – an offering on ‘resilience’

There is a small miracle happening in Hemel Hempstead. I am watching my boy snowboard. And I can see him.

Two months ago I had another painful breakdown. When I came to see my boy snowboard, I could not see through the mess of my own mind, the blindness induced by the hell of my own estranged thinking.

Now I seem to have re-emerged. This is the second significant breakdown in a year, after twenty five years of being (mostly) OK. I have come close prior to this double episode – when I was bullied at a university, when the Centre for Patient Leadership dream died, but have got across the thin ice. Until last Summer…

This bout has been scary as well as shocking. I am reappraising my life, my work and how I look after myself. I carried on working at home, ‘acted as if’ I was OK when I wasn’t, and… despaired. Well, you know the sort of stuff if you’ve been through it. And if you haven’t, well lucky you.

I have also been asked, as writer in resident at the wonderful Bethlem Gallery, to pen thoughts on ‘resilience’. It is a word I am not comfortable with for many reasons, not least because it implies an old style mental toughness that I don’t have. Bouncing back is also a poor analogy for what I have been through. Maybe it is mere ‘adjustment’ but that seems banal. It is certainly a ‘coming through’. It is the walk through fire. It is the stripping down. I have gained and lost. And vice-versa. It is all these things and more.

I was not sure whether to write a blog. Or a poem. This below seems a combination of the two. I hope it helps a little to those going through it. It is also written in anger. Rage almost, at those who pretend to know and due to their unknowing, pontificate and academicise suffering. To those in power who will not open the gates of the citadels to the deeper wisdom of those who bring back jewels from the caves of suffering. Our call is growing. But I shall leave the politics for another time.

Anyway, here it is, whatever it is – an offering….

 

You Who

 

you who

have been through so much
have been turned endlessly inside out
have had your identity blanked at the border of normalcy
are still within your story and do not know what…
have been bankrupted
torn
become nocturnal
sweat and come to know the rank sweet smell of your own pillow
cry for rusty miracles and dusted off kindnesses
feel to the bone and muscle and nerve
what one bloody step counts for
who wait and wait and

know

that there are fearful readers of your life who do not understand
the pretty island story-tellers
who shrug and cannot land
who do not love and do not listen
yet give and give of their own spittling words
and light cold foreign fires
that smoke for blanketing years
and yet you pay them your grave
attention and grace
for their worthless weavings
and power and insouciance

come

away to the elsewhere
the softness of your eyes
and purple darkness behind the moth lids
shift the look slowly right then slowly left
for a moment open
then days and days until
the belly begins its tentative fall
and though the haunts of thought
will stalk you when your blossomy look
finally sights the green
stand stand and breathe across the graze of thorn
know that the most toughened fences of wire bend
that this is coming yours – the field –
the precise centre of the else and un-
greened field
you’ve always felt for

then
let’s gather at the edge

 

___

(c) David Gilbert 2017

 

If you liked this offering, or even if you didn’t, see more of my blogs on the NHS and on mental health; and poetry at http://www.futurepatientblog.com

 

Can I Ask A Question? The travails of a grumpy old git

I used to think it was easy to ask questions. Easier at least than providing answers. Now I’m not so sure. Asking truth of power risks further hurt.

When I was 15, I asked my parents whether things were OK. I sensed the vibes. My mum said that I was thinking too much, and of course everything was alright. Six months later my parents divorced.

Perhaps from then on, I’ve questioned the validity of my insights, sometimes getting it horribly wrong. Sometimes horribly right. I’ve always looked to others for advice and got paralysed when the plethora of well-meaning, but subjective views of my situation conflicted.

Lately, I’m asking lots of questions of NHS power – whether a man should lead a specialist women’s trust; about the concentrated policy clout of ‘thinkies’ as one friend calls the think tanks; and of course about why patients – those who have had life-changing illness, injury or disability – have no power in the system.

Grumpy Git

I find myself particularly irritated these days – and there I was imagining a mild middle age with pipe and slippers. Sad grumpy git. Maybe I’m still not quite balanced after another shitty time of terrible anxiety. Or maybe I am just flexing my professional authority (???).

Maybe the questioning is indicative of me getting older and feeling nothing is changing. I know social movements take an age, but FFS when is another organisation going to pick up the baton of Patient Director role? It’s a no brainer – see my recent blog.
But what gets my goat most is that patients have no part in policy making. I know Simon Stevens means well. But I see little seriousness from him, despite the rhetoric, or from ‘thinkies, from clever social media commentators, or ‘movers and shakers’ that give me confidence in the direction we are travelling in.

This at a time when wonks come on the radio and say ‘the public has to decide’ about the future of the NHS. Well, if you don’t let us in, how can we?

But maybe the tone and framing of my question is wrong – maybe I should phrase it more politely? ‘What will help patients to be more involved in policy making?… Mr Stevens? Please? Hello? Hello?…’ When nobody is listening, when you have no power, what can you do but try to shout a little louder?

The questional hypothesis

I have come up with a hypothesis – that, if you feel powerless, that the closer you are to decision makers the further away you are from asking difficult questions. I call it the ‘questional hypothesis’. You can challenge Trump safely on twitter and feel that you are doing something. But what about challenging the local authority about litter? Or making a complaint to the NHS? Or tackling neighbour’s about the noise. Not easy. Better to keep your head down. Quiet life tablets.

Look at how difficult it is for a women interviewer to ask a tricky question of a middle aged white man in charge of a football club. You get threatened with a slap – of course it’s a joke… or is it? Who dared question Fergie? Or now Mourinho?

Equalising power in the room is the answer of course – taking the time to facilitate trusting relationships means safer environments to ask questions – but you’ve got to be in the same room first. It is hard long work trying to even out power relationships.

But then the opposite danger is apparent – cosiness. You love everyone so much that you won’t challenge at all. This is why powerful and wise organisations prefer to have people ‘pissing from inside the tent, than outside’.

Anita Roddick said she kept the door open for mavericks to challenge her because she knew the dangers of over-cosines and group think.. Meanwhile Elton John realised he was going mad when he wrecked a hotel room that had the wrong coloured flowers. He noticed that not one of his minders raised a finger to stop him.

That’s why we have to ask questions. Always. Forever. Never ever give up.

I am tired

But it is wearying. It’s part of the emotional labour of being a patient leader (or any other disrupter of the status quo). You become the lightning rod for other people’s anxieties about the questions you raise. People – particularly those in power – can pile in and try to bury the questioner as if they hold a view contrary to their own.

I am tired: I am tired of thirty years of saying ‘what about patients’? I am tired of seeing the same arguments come round and listening again and again to my spiel about how to do engagement. I am tired of running focus groups that won’t change anything. I am tired of pointing out that it is the same folks in the NHS and think tanks that dominate public discourse.

I am tired of seeing defenders of the status quo puff themselves up over invitational breakfasts or leave just after their event presentations before the speaker on co-production – yes Ally, that’s for you 🙂

I am tired. What was the question? Can you keep on asking?

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

 

(c) David Gilbert 2017

 

 

 

 

 

The Forgotten – how non-clinical staff are the key to a better NHS

Andy, who was later to hang himself had put his fist through the window. The trail of blood from the window led down the corridor of the psychiatric unit. While all clinical staff were deployed chasing him out to the car park, with their readied needles, we ‘residents’ watched the drama unfold. The only person that helped calm things for me, was Mandy the receptionist, who sat me down in the ward entrance area and made me a cup of tea (sugary).

I have written more about Mandy et al here

Non-clinical staff – security staff, fire officers, receptionists, porters, admin folk, even those nasty ‘bureaucratic box tickers’ called managers – are as forgotten sometimes as people who use services. How would the NHS function without estates managers, HR professionals, finance experts, those who run the show, who have a public image that lies somewhere between politicians and estate agents.

Even the title ‘non-clinical’ defines them by what they are not. It isn’t asset based, that’s for sure!

I’ve just read an article suggesting that the NHS might consider saving money on the ‘soft jobs’, such as chaplains.
There is little evidence of the ‘impact’ that such roles have on quality, safety or patients’ experience. But in this frenzied system, where what is measured matters, you can bet that there is not a whole lot of money going into validating the role of such folk.

Absence of Evidence

The system’s perpetual focus on clinical delivery (and money of course) is exacerbated by a research industry that focuses almost entirely on the clinical. It’s an absence of evidence, not evidence of absence. Any work would also need to focus on ‘what matters’ to people who use services. And the chaplain at the psych unit was my only visitor most days, when I had lost my identity, my health, my job, my relationships… Almost my life. How do you want to measure that?

I’ve done some work in this area professionally. I ran the first national survey on GP receptionists when I worked for Which magazine. We asked receptionists and patients for their improvement priorities. Surprise, surprise, they were almost identical, with receptionists also wanting more knowledge of clinical issues (perhaps because they felt in the frontline, having to ‘screen’ patients inadvertently sometimes). Many told us about how hard their job is. I’m not sure I would want to be one.

At the ill-fated NHSU, we explored patient and staff perspectives of non-clinical staff to generate standards of ‘supporting care’ (I need to fish that one out – see below). And while at Croydon PCT, I kickstarted a project to find out what non-clinical staff (and clinical staff) learned from patients through their ‘thousands of everyday conversations’. Unfortunately, the new Director of Community Services scrapped the project just after we bought 10,000 post-it notes that we’re going to be used in staff meetings to record their learning. I wonder if they are still there?

The non-valued clinical staff still are.

Why I took the Patient Director role

When I learned about the Patient Director job at Sussex MSK Partnership, I was invited down for the day to meet folk. It was cold, it was a dawn ride around the M25, and I had a heavy cold. I wasn’t sure about the job. I met various lovely people.

Then I shadowed Stephen Cracknell, who was then what we call a ‘patient care adviser’. When we receive GP referrals for musculoskeletal conditions, an expert clinician ‘triages’ (assesses and screens) the referral and decides whether the person should come to one of our ‘community specialist clinics’ or be advised to go to see someone in secondary care (the hospital). Then it’s people like Stephen who take over.

The PCAs get in touch with the patient by phone or letter, offer an appointment and handle any queries on the phone.

I was intrigued. I had never worked in a service that so relied on such people and who were integral to everything it did. I listened to Stephen handle calls, leave messages, answer difficult question, keeping his calm, and sorting out tricky problems.
Here was an ‘expert’ who required the skills and qualities of the top end of ‘customer care’ services. And, if they were in this close contact with patients, then surely they could also be a ‘sponge’ for learning about what matters to patients and carers. Their thousands of everyday conversations could fuel any ‘patient experience’ work we (I was beginning to think ‘we’ by this time) could do.

But there was one more thing I needed to know. I asked Stephen whether he enjoyed his job. Staff experiences and patients’ experiences go hand in hand as you all know. He said he loved it, that his team were all friends, that he enjoyed being of service and got a real kick out of supporting people.

And that’s when I decided I would apply for the job.

The above is a story I tell regularly, partly to embarrass Stephen. But also to remind us all why we are here.

Time for an exciting piece of work

Now I have the opportunity to be part of a project that could help Stephen, the PCAs, other non-clinical staff, and of course the people we serve. The local CCGs (Brighton and Hove, Mid Sussex and Horsham) have agreed to make a project called ‘Supporting Care’ one of three CQUIN projects for 207/18. This means we will get additional funding for Focusing on this aspect of improving quality – supporting non-clinical staff to get even better at providing a great service.

We will focus on:
• Patient Care Advisers and phone contact – including their ‘contact’ skills, signposting abilities, etc
• Receptionists – including their welcoming of people, but also how they can improve the environment, etc.
• Other corporate staff – for example, how do people in ‘backroom’ roles keep connected to ‘what matters’

The project will be co-produced with our Patient and Carer Forum, Patient Partners and of course staff (clinical too!). We will explore the issues (partly through surveys and qualitative research) and come together in June to think through some ways of improving quality. It’s going to be fun.

Can you help?

This is where you come in: Do you know of any work that explores these issues?? In the health or non-health sector? Do you know of any ‘standards’ or ‘values and principles’ that have been generated with, and for, non-clinical staff? Do you have ideas on how we can explore what helps and what gets in the way of these good folk delivering a great service?

I am not interested in work that is about ‘beating up’ staff for doing a bad job – of course, we need to know what’s going wrong, but if we don’t, in the work itself, model the relationships we want to see at the ‘frontline’, what’s the point? We are all under enough pressure as it is. Nobody is trying to do a bad job, and few in the health service feel valued as it is. This is a chance to celebrate great practice too!

I’d love to hear from you. Please get in touch with me at david.gilbert3@nhs.net

Let’s remember the forgotten, this time before they fall.

If you liked this blog, please see my other 60 or so posts at futurepatientblog.com

© David Gilbert 2017

What’s Stopping You Appointing A Patient Director? An open letter to all healthcare organisations

Dear Chief Executive

What’s stopping you appointing a Patient Director?

I know you are struggling to keep your organisation’s head above water. I know the demands of the system and the seemingly inescapable tide of pressures – the demographics, the ‘expectations’, the limited capacity, the desire to uphold and even improve quality and safety. The money. The money.

I know you want to ‘put patients at the centre’. I know you do all you can to ensure you gather patient experience data, set up involvement groups, ‘involve’ people in decisions, satisfy the seemingly voracious ‘demands’ of the ‘the public’. The media. The money.

I know you have a patient and public involvement lead over there, reporting somehow to the Board. I know you have a patient experience team over here. Both sets of people up to their neck in trying to ‘engage’ and influence upwards – to put patients on an equal footing.

I know you have the Board at your back, a Chair who believes that the values of the organisation need instilling a vision that focuses on quality. I know you have patient stories that move you all, at the beginning of each board meeting, that sets the tone (you hope) for all subsequent conversations.

Back at the ‘coalface’, your clinicians are shifting towards believing in, and supporting, shared decision making. Trying to encourage supported self management and linking up with health and well being initiatives in the community.

So, why not take the next step?

In all parts of the country, the patient movement is growing. There are ‘patient entrepreneurs’ inventing apps and social entrepreneurs, community development activists, people with ‘lived experience’ gathering in pathway redesign meetings, moving beyond just ‘telling their stories’ – staying in the room to reframe problems and come up with new insights and angles; using the wisdom they have gained through suffering – wanting not to shout or merely have a ‘voice’ any more. But to be true partners.

And you want to do ‘integration’, be up there with the Vanguards, keep abreast of the agenda from STPs, and somewhere in your heart, you know that it is patients – those who know about fragmentation, lack of consistency and coordination – who could be the glue that provides the ammunition for peace. They could help stop the warring partners fighting over who needs ‘control’ of the system. Maybe it’s time to let go a little?

You’ve been to the fancy conferences, you’ve been inspired by folk who have been doing good stuff in patches. You’ve begun to notice out of the corner of your eye, a new breed of ‘patient leaders’ – those who have experience of life-changing illness, injury or disability who want to influence change. And they want to be partners.

You have begun to realise perhaps that the old way of doing engagement does not work – feedback mechanisms that don’t focus on what matters, or fail to have impact, and focus group reports that sit on the shelf. You are tired of hearing about committees where a ‘rep’ bangs on the same drum month after month. You may even notice that it is the very structures you have that are preserving an unnecessary status quo – that keep a ‘them and us’ that situates people perennially on the circumference rather than ‘at the centre’.

And yet at the same time, you are distrustful that any one patient can ‘represent’ others (isn’t that what a Patient Director does, big time?) and are beginning to wonder if there is a way out of this self-fulfilling and vicious cycle – poor ways of doing engagement don’t work, so why bother at all. Let’s keep the façade and get on with the real work, every day service delivery, maintaining quality, governance, improvement… The money. The money.

And the real decisions keep on taking place in secret. You’re uncomfortable, because you know there are tricky times ahead. The STPs all posit huge change. You want to engage people, but you don’t know how. Everywhere there is fear about public ‘opposition’. You want to ‘educate’ the public, know (perhaps?) you should have involved them in the first place, but aaagh, how?

So, take a look at what we’ve done in Sussex MSK Partnership. When the CCGs put out a contract for a partnership to oversee the entire musculoskeletal pathway and to make sure ‘patients are in control’ through an emphasis on supported self-management and shared decision making, they went the step further – they appointed a Patient Director at executive level.

The Patient Director ‘represents’ nobody, not even themselves. They are there to ensure that there is a culture and systems that embed ‘patient partnerships’ in everyday business. We are there (I have an equivalent in the Eastern partnership, Anne Sabine) to model the relationships at exec team level that should be shared throughout the culture of the organisation. We are there to broker opportunities for patients at all levels – at corporate and pathway governance level; in improvement work; in training; in induction; in values and vision work. And more…

It is not perfect. We are still learning and evolving. But the early signs are good. On each of our three CQUIN projects for 2016/17, patient partners contributed to design and delivery of work on pain services redesign, shared decision making and patient-centred outcomes. We have eight supported, trained and valued partners who will meet next month to decide how to move forward and how to bring along others – and how to link to the two hundred patients who have volunteered to be ‘more involved’.

These patient partners are becoming a fixture whenever quality or safety is discussed – they are not ‘reps’ and they do not displace other engagement or patient experience work – but they are supposed to be in the room when decisions are made – the aim is to share power. And the joy is seeing clinicians, non-clinicians and patient partners in the room together exploring why they hold different views, going beneath the surface, checking their own and each other’s assumptions, being vulnerable, staying at the table for difficult discussions (The money. The money) and coming up with new ways of doing things.

This year’s CQUIN includes a piece of work to support non-clinical staff to improve patients’ experiences. And the team that will do the work will include all of us – patients, receptionists, administrators, clinicians, etc. That is why I have kept going through dark times this year – this is why I hold onto the light. There is a heart and a mind and a wisdom to this work that I have seldom seen in thirty years of ‘doing’ involvement.

I would say this wouldn’t I, but I do not believe we would be where we are in just two years of a new partnership, trying to transform and deliver services for a catchment population of three-quarters of a million population, if there was not a Patient Director. Someone who could help oversee the various strands of patient-centred work and broker these sorts of opportunities. And believe it or not, it could save money – piloting of a new appointment system has been estimated to save thousands of cancelled appointments. The money. The money.

It is also the right thing to do, ethically, morally, philosophically, politically, personally, professionally. After all if you were a man leading an organisation made up entirely of men that was devoted to women’s rights, you wouldn’t just set up a couple of focus groups, get a ‘woman’s involvement’ lead, have a ‘women’s sub-committee’ and have emotional ‘women’s stories’ at the beginning of Board meetings and think that was really ‘putting women at the centre’.

The more I think about it, the more ridiculous it seems. There are 209 clinical commissioning groups, 136 acute non-specialist trusts, 17 acute specialist trusts, 55 mental health trusts, 34 community providers, 10 ambulance trusts, 7,674 GP practices, 853 for-profit and not-for-profit independent sector organisations, providing care to NHS patients from 7,331 locations. There are also dozens of national agencies, regulatory bodies and think tanks, etc.

That’s a hell of a lot of organisations wanting to be ‘patient-centred’. Yet only two organisations with Patient Directors (NB. There is another brave trust, Sussex Partnership Trust that is employing user/carer leaders in their business teams). Not really good enough, is it?

It all adds up: need for new engagement approaches + valuing patients for what they bring + creating opportunities + supporting people …. ++++ patient director = a better way of doing things that can help heal the healthcare system.

So, what’s stopping you?

Let me know, and I’d be happy to help and I’m sure our fellow patient partners would too.

All the best

© David Gilbert, 2017

If you liked this blog, there are lots more at futurepatientblog.com 

Poetry In The Mean Time

I haven’t been able to write a blog recently. Hopefully soon. So here are some more poems written in the meantime and mean time.

Once An Avocet

I used to be able to sit
on a rough wooden bench
in a hide on the north-eastern point of the Norfolk Broads
with jam sandwiches
and big binoculars
and big brother in his grown up kagool
me in my knitted light blue jumper with a white hoop
waiting for the waders
to come sift the marsh at low tide
water still sloshing in my wellies
and the tatty grubby print tacked onto the gnarled wall
depicting knot, sanderling, curlew, oyster catcher
the wind throbbing over the corrugated iron roof
thinking about what would be on telly
dying to itch my bum
heroically still for nature’s sake
because, beyond anything and football
I wanted to be Bellamy or Attenborough.
Was it worth it? It was cold.
Sometimes we saw the usual
muddy greys and browns
red legs, yellow legs, tall, squat, long billed, short, slow and the quick
once an avocet
which we ticked off in the Observer Book Of Birds
the marvel of a flock lifting simultaneously against the dying sun.
Mostly it was tedious as hell
particularly when we had finished the cheese and onion crisps
which we melted on the tongue so as not to crunch.
But I used to be able to sit.

Reasons Not To Believe

That distant dot at dusk twinkles
like a low fractious star.
We bely our freight.
Thought’s drag is heavier than tide.

Outlandish promises reveal themselves
vacuous as great aunts.
You knock on wood three times
for nought.

See the bells that do
not chime.

Here’s a trick you need to learn:
Watch that star approach
and turn to plane.

Takes

The park is quiet.
I have the birds to myself.

I’ve been told crows
remember the faces
of those that disturb them.
I’m in no mood.

Enfield Borough Council has taken five days
to strip down and polish the wooden gate
and barred the way to cars.

Oz, the café owner, friend,
takes the piss and reckons
he could have done it in a day.

I’m not complaining.
And nor does the wren on the post.
The lake is not scummy with crusts
bins far from overflowing.

I am new to this business
of nowhere. I want cake.

The book says it takes weeks, if not months
to disinvest from thought
and re-inhabit the resulting emptiness
with a different sort of presence.

But for the first time, I notice the sign
‘c u ion idth estricti n’

I have new glasses – the woman at Specs Direct
said they take years off me.
We talked about therapeutic optometry.

A man with a white parrot on his shoulder
orders a coffee and three scones.
Cream and strawberry jam.
I want to break into applause.

How long does it take for a man
to take a minute for himself?
Oz tells me the surveyors
have OK’d the re-opening of the gate.

The Open Field

It has taken me 34 years to walk out
through a broken fence
into the middle of an open field,
hills to one side, ash trees to the other

through the body’s inchoate fear
into the open presence
getting used to these new lenses,
a trail of lugubrious, undulating crows

against the vast grey dome
of transaction, restlessness and flight,
knowing I am alone
and alright

Back In Town – an everyday tale of resurrection

 

I would better recognise this place
if there were a dove
or some mad man broke from the cover of that hedge
and screamed hallelujah.

Failing that, a pigeon would do.
The weather is nailed grey
everything levelled out.

They’ve planted saplings by the rails,
the old church is surrounded by fork lift trucks
as if they’re getting ready to up it into the sky.
And my favourite wine bar has gone.

Maybe I should not have come back.
I know that this is how it has to happen
like everyone with cancer must wake at 3am
alone at the alone time
the hours having moved before they were ready.

All stories of beautiful returns are lies.
They are uneventful
and rely on witnesses
you don’t often see at this hour of the morning.

Take that man on the bench
as he sweeps his thumb across his screen.
Been out all night.
And even if he looked up,
wouldn’t know me now from Adam.

There’s a broken sign, its arrow
leaning into the ditch.

He knows and I know
we may be equal, but we are still restless
that what we recreate is as meaningless
as what we have dismantled.

I want to tell him
love is glue. But
it looks like he will have to re-learn
the hard way.

For now, the chances of such meetings
are hardly propitious.
And I need a good breakfast
before it all begins again.

Elephants. Fragile.

Not yet. You are not yet ready.
They are not yet ready for you.

This morning, the warm hold of the small room
Haydn’s sweet piano through your ribs
making you think of playgrounds
and suddenly tears.

The white sun through the condensation on the glass.
The window jammed.

You waited in the silence.
The scary, crazy silence.
You tried to scare yourself with thought
and its drilling down
and when done for a while
you tried to scare yourself with silence.

Walk eyes down.
Eyes down.

The white painted cross on the pavement.
The builder who ‘fuck it, I left my fucking new phone at fucking screw fix’.
The ‘First Class Garage’.

Last night, you read of the island in the Finnish archipelago
and the adventures of grandmother
lying down and watching the feather
loosen itself from the blade of grass.

This morning, you got ready slowly.
You wanted the words for a story of yourself:
Lightness. Tentativeness. Nothing quite expressed –
vulnerability not quite.
Resilience. Re-silence-I.

Then you remembered when you moved house.
Stacking the small wooden figures in little boxes marked:
Elephants. Fragile.

Field Trip

On the botany field trip to Abergavenny
we paired up to investigate the flora
of an old cemetery with yellow lichen

spilling greedily over the grave stones
obliterating names of husbands and wives.
(Remember, they are half fungi, half algae,

living in symbiosis. They love the south.
Healthy growth is a sign of unpolluted air).
We threw quadrats into the long grass.

I like to imagine that I could still name
each specimen we found. But I can’t.
This was the morning of that famous last night

we got drunk with girls from another school
who we wouldn’t see again, holding hands
as long as we could in the dark.

The Path Has Dried

The path has dried,
green moss grows on bark.

There’s a flurry of leaf litter
and sun through the chill.

I can make out the markings
of a sparrowhawk, low

over the field, I would
not have seen last week.

To be the rain

slipping from the cold
grip of the sea
discrete, almost invisible
drawn by the heat

gathered into the hold
and urgency
of the tightening cloud
and its atmospheric thrust

then departing again, hurled
as indivisible sheets
through flights of birds

released, unfurled
enveloping earth
like a lover returned

© David Gilbert, 2017

Like Listening For Glass – more poems written during troubled times

I don’t have the capacity for blogs at the moment. These poems have been written during a period of ill-health. Again. Unfortunately. I hope you get something from them.

The Wind

Crows blown sideways
the treetops diagonal
children grown wild in the playground
a pink hat on the pavement
trains interrupted, thought disfigured.

I’m in Wizard of Oz – seeing things fly
– roof tiles, pot plants, sheets of cellophane

a two foot high hard plastic container
that narrowly misses the head of a pedestrian
plugged into his soundtrack
looking down at his phone.

I imagine mares with flailing manes
boats lost and some god grinning
at his tempestuous tidings.

I remember the first breeze, it came
with an innocent breath – what if
we moved things around a bit?
And before you know

it downs an entire civilisation.
I step around the spilled innards
of a toppled wheelie bin

under a momentary fragment of sky –
a shocking blue. This aftermath
will take some getting used to.

—-

 

Poem 

In our attic room, surrounded by the night’s rain,
unsure whether I am asleep or awake,
a hole in-between lets in everything
that poured down throughout the day.

As I go under, you turn from me, sighing
like the waves’ breath. And maybe I’m wrong.
When I’m this adrift, I usually am. It’s long
long before dawn. But I hear the gulls cry.

 

Report

1. This is called Saturday. In this dimension they divide flux by line.

2. They wake occasionally to crack along the seam, but prefer to lay dormant.

3. They wave their limbs about or do ‘running’.

4. There are containers for those not ‘operating properly’ (am still investigating the phrase).

5. When they begin to get somewhere, they go back.

6. They are fuelled by a fungus in the brain that prevents them realising it. They would call this ‘irony’.

7. They don’t like crows. There is a plethora of coconut oil.

8. You can pick up voices in the dark calling something like: “What’s your anaesthetic, darling?”

9. They think they own pets, or each other. They would call this ‘humour’. Or be terrified.

10. There was one called Bowie who said he had a rocket and possessed nice haircuts.

 

Wherever

The boat is setting out from the reed bed
From above, it must look like millions of O’s spreading across the lake

It will be beautiful to someone
But the heron will not notice

And I am merely at the shore
Throwing stones at the water

There is a piano in my left hemisphere
Diminuendo in an empty hallway

And I am there imagining this
It seems wherever I am, I am not

And wherever the boat has gone
I have lost sight of it.

 

Flowers By The Road

All I need to do is look around
And am fear

All I need to do is look inside
And am fear

I will keep a soft eye on
Flowers by the road

Breathe you in slowly
Fill with yellow

Draw down the green
Unmoving to passers by

Root in that black container
Sink into this gut of earth

Below the winded ribs
And recover the day

 

 

Ceasefire

There is a trembling in the woods
A machine gun

The woodpecker’s bass drill
Thinking of how its neck muscles, thickened skull and third inner eyelid

Prevent damage to the brain
I am with my father again

In the clearing by the pond they call Red Arches
I take off my glove, and finger the burning cold

Hold out my hand in the only way I can – a gesture of peace
He tells me to stay very still

All I know is uneasy and my body frozen
Like listening for glass

Or an eye above watching me
The way a nuthatch returns

Me trailing its flight
Dipping in a long low u from the highest of trees

Removes the awareness of breathing
The stomach drops

And its small black eye aims at the hand
And its black beak at the seed in my hand

Over and over again
I must stand here in the trembling woods

For the attack
And ceasefire

 

Written while listening to Philip Glass, ‘Opening’.

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

All poems © David Gilbert 2017

When Elephants Fight: Time for honest discussions (with patients and citizens) about the NHS

This blog was first posted at http://www.nhsreform.co.uk/blog/2017-02-07/nhs-reform-time-to-learn-time-to-listen-time-to-work-together

When you don’t talk about difficult things:
1. The real problems fester and grow.
2. When the festering hurt gets too much, things boil over and everyone shouts.
3. The ones with the loudest voices do the most shouting.
4. The most vulnerable voices get excluded and are hurt in the overall process.

There is an African proverb: When elephants fight, the grass gets trampled.

It is more courageous to be open and vulnerable than to be fixed, more wise to stay at the table of difficulty and hear people out, than to let things fester or to shout. That is why I have joined a little group of kind people who want to hold a space for us to talk about NHS reform. See http://www.nhsreform.co.uk/blog/2017-02-07/nhs-reform-time-to-learn-time-to-listen-time-to-work-together

The NHS is a hot topic, yet few people are holding a space for dialogue, reflection, listening, questioning, exploring…. There is too much belligerence and toxicity around issues of access, safety, funding and ideology to allow for that.

The NHS Forum wants to change that so we gain richer insights into the issues and can find solutions together. It seems a brave non-partisan attempt to find ways to model partnership working in policy. I wish it all the very best and am proud to be invited to be part of its editorial board.

However, if your thing is to shout, or if you want to insult people because you do not like the ideas expressed, please go somewhere else. The world Is sufficiently febrile at present without us adding to it.

Let’s put things another way: After many years of chronic tension in my family, one day my mum and dad argued. Two days later they divorced. I was 14 and tried to facilitate, to no avail. Stupid really in hindsight. But there you are. Then, after many years of suppressing my own anxieties, I had a breakdown.

The pattern is clear. I don’t want the NHS family to divorce. Or for the children (patients, carers) not to have a voice, or to have a breakdown (suffer worse care).

Can we turn down the heat?

I have written about the Junior Doctor dispute and how the belligerence on ‘both sides’ created a toxic atmosphere that further poisoned relationships and any opportunity for sensible dialogue. What could have been an opportunity to discuss what different people meant by ‘safe’ working, or to explore whether it is feasible to have a seven day NHS (and what people mean by the phrase) was drowned out. This is understandable to some degree – careers were at stake, not to mention patient safety. But the real issues went unexplored. And people lobbed bricks (verbal and metaphorical) at each other.

It seems futile for any side in a playground fight to point to the other or complain to the teacher, ‘but they started it’. It all grew wearisome. And things continue to fester.

I have also written here about how the ‘independent sector’ (let’s call a spade a spade – the private sector) needs to come clean about its own shareholder interests and about accountability issues, as well as lauding its ‘customer focus’. Maybe then we can have a grown up debate about the role of the private sector in the NHS.

What’s to talk about? Lots!

There are plenty of interesting issues to explore:

• What should be done about the pharma industry that contributes to research, yet has secretive pricing deals? That contributes to economic growth, yet has a pretty dodgy record when it comes to openness around safety of some of its products?
• When we talk privatisation, are we talking about the private sector not being allowed to support commissioning (that may not affect the NHS being free at the point of delivery, at least not directly) or do we get more worried only when the private sector charges for delivery of care?
• When the private sector steps in to provide services, does that ease pressure on the NHS, or add to it? And what, if any, should be the role of private insurers?
• And some intriguing issues at the edge – aren’t GPs part of the private sector? Does that matter? What do we do about the many who defend the NHS, yet do private practice? Where is NHS dentistry in all this? And opticians?
• What do we do about social care every time the NHS gets its additional emergency money (which it has often done, to the exclusion of the less powerful voices) who want more prevention and public health?
• Is it really case of the NHS just getting more funding? More beds? More this, more that? Is the only alternative model – the only one that gets an airing – the American one? What about learning from the Nordics? Is that a valid option, or is our tax-based system still the best way to go?

All worthy stuff to explore. But none of this is aired beyond the arcane world of policy think tanks. I believe this is partly because people seem to be entrenched, and any attempt to explore are drowned in a chorus, redolent of the intractable mind and voice that shouts ‘if you’re not for us, you’re against us’. Or by a frenzied media unable to move beyond blac and white?

I bet a few people reading this will accuse me of ‘softening’ a pro-NHS stance, by even raising the questions. Well, questing for truth and justice is my passion – and if that raises difficult issues, so be it. While we hide behind flags and banners, the NHS is being dismantled by stealth.

Moreover, while the stealth continues, secrecy affects another area – my real passion: patients, service users, carers, communities and citizens being included as partners in decision making.

Meanwhile, NHS England is at it too, ducking the real problems and quashing dialogue, mainly out of fear. And foisting problems on cash-strapped commissioners, who foist it onto providers, and so it goes on. Secretive deals are being done in STP land. Decisions about closure of hospitals (aka ‘reconfiguration’), ‘decommissioning’ and ‘prioritisation (aka ‘rationing’) will take place behind closed doors. And we, the children (aka those of us who pay for the system and use it) have no voice. See my blog on ‘Secret Transformation Plans’.

I also know that, behind the public scenes of ideological defiance, all political parties share the same worries – that health services are under threat because of limited resources and changing demographics.

Patients and Citizens as Partners

The most significant issue for me is that I see a new generation of ‘patient leaders’ – people with experience of life-changing illness, injury or disability, who want to change things through working in partnership – ready to help, yet their expertise ignored again and again. The very people who are most affected – the very people who can help most – are ignored. This is about power.

You would not expect a ‘women-centred organisation’ led entirely by men. Yet our ‘patient-centred’ NHS is run entirely by clinical and managerial leaders at executive level. We have a few token ‘non-execs’ and a smattering of ‘PPI leads’ and ‘lay reps’. But this is not real accountability, nor does it signify any sort of real shift in the balance of decision making that might help the NHS out of its fix.

And, yes, at local level, things are changing a little – the rise of experience-based co-design, asset-based community development, online dialogue, patient leadership, etc.

But at policy level, very little. NHS England, and in particular, Tim Kelsey ignored patient voice during the care.data fiasco. The BMA and Hunt ignored us during the Junior Doc dispute. Simon Stephens ignored us when STPs started…

Maybe it’s time that patient leaders play the grown ups? Because the NHS family has become dysfunctional. And the dismantling of the NHS is too serious to be left just to those who shout loudest.

Let’s talk. Let’s listen. Let’s explore. Let’s have patients, carers and citizens at the table – for real. Let’s find solutions together. Come join us?
___

David Gilbert is a mental health service user, with 30 years experience in the NHS, and in the field of patient and public engagement. He is currently Patient Director, Sussex MSK Partnership (Central), the first such role in the NHS. He is on the editorial board in his personal capacity, and these are his personal views.

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

 

(c) David GIlbert 2017

 

This Coldest Day – testimony for a kind soul

Dear Rosamund

I wasn’t a close friend. But close enough, I hope, to say a few things. I was going to write a poem, but you hated verse.

You didn’t get to live this coldest day of the year. I went for a walk. The guy in the car park was full of hacking cough and phlegm as he pulled on his gloves. The parakeets were making a bee line above the straight path to the field where the daffodil bulbs lie waiting. I was wondering why the joggers bothered. Why folk go on. Why they don’t.

You beat me to the most brilliant job at the BMJ. I’m so glad you did. We met at the UCLH café afterwards and in an hour I felt I knew you. I think we were (The past tense arrives with quickening gloom) quite similar – born activists and ambivalent towards academia (loving its territories of investigation and curiosity, hating its straight lines and dictats). And you made that job your own and were absolutely the right person at the right time. You were revolutionising that arena. And were beginning to reach deeper and broader.

What happened? There is that self-indulgent curiosity. I’m not sure why it matters. You’re gone.

You didn’t like poetry. We teased each other across social media. We both had cats and swapped pictures. Yours is a big furry male beauty. Mine a wimpish tabby. But you thought she was gorgeous. There is that heart again.

And here in the warm café, I am looking for an ‘organising principle’ – a theme for what I am trying to say. That is what I have been taught to do in poetry, in work, in life. But my family is away and my days have been loosened. I write what I write for a change. We go wherever we go – sometimes things happen without explanation. This blog. Your act.

During the junior doctors dispute, we both got crazed by the belligerence of both sides and the toxic nature of the debate – what happens when two sets of people set up and go tooth for tooth, claw for claw. We spied a different space and a potential solution – bring patients in. And we worked bloody hard to get a co-signed letter in the BMJ to all parties, pleading for dialogue and inclusivity. That spirit. That energy. That tenacity. That sheer bloody mindedness.

Is that what drove you in the end? Speculation. Speculation. It really doesn’t help. You, who also needed evidence. Us too. Left without.

You do need to know that you have left a deep legacy amongst us fellow ‘patient leaders’ – a term you had some problems with (we all do – even those that invented it!). But you deeply got it – that people who have had life-changing illness, injury or disability can help change healthcare. Indeed we may be the ones who will.

You deeply moved those of us who hung on to your wonderful edited articles in the BMJ. Generous. Kind. Thoughtful. Insightful. Bla bla. Words. Good ones. But mere words.

And you inspired me more than I was able to say (NOTE to readers – go now tell someone how great they are – life is utterly short).

I do what I do, only because of fellow travellers like you. We are left in a more vulnerable place. I have talked to two people who didn’t know you well, but feel that we need more than ever to support each other, to create those loose ties across the diaspora of the marginalised in these difficult times – that your death has made us even more aware of the need to connect.

I think you would have liked my parable ‘The Jewel Merchants’. I wish I could have seen your face when reading it. I wish I could have seen you at our recent event with thirty or so amazing patient leaders – you would have shone with pride at the people there. The gathering of folk ready to change healthcare forever. We will go on, with your blessings in our mind and heart. Corny? You bet.

Your laugh was intemperate and your humour acerbic and infectious. You tapped into my dark side at times, and I loved that. But. But. But.

But it is the wilful brutality of suicide that I have been struggling with. You are not my first friend to have done the deed. I have seen people dabble with suicidal thoughts who wandered wearily into a High Street and been hit by cars. I am not sure they wanted that, and were unfortunate. I did that and survived. The dice.

But I have also seen others who have gone determined and without second thoughts. It is too late now to say ‘hold on, things will change’. Maybe you would not have heard. The futility of asking myself what I could have done, what you could have asked is clear – but the guilt (again, self-indulgent) seeds itself unbearably. This too shall pass. It was, after all, your decision – we need to respect that. I think you would have argued for that in an article if you had written it.

I do not know why it is worse to think that you chose to die, than it is to bear the weight of a death through a choiceless voiceless illness. Or maybe that was the case. How little we know.

It comes to that wilful self-inflicted brutality for me. At that point you must have borne a self-loathing or a self-respect that saw that this was the only thing to free yourself of pain – again, we must respect that. I have seen what the wilful mind can do, and stood near to where you stood. But you made a choice. No blame. Respect.

Maybe it’s as Joni Mitchell said: ‘All we ever wanted is to come in from the cold’. I hope you are warmer now. I am agnostic, weave between religious thoughts and secular ones. But mostly they come down to the only thing I know any more – let’s be kind to each other. You were so kind. I am going to miss you.