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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.

The Jewel Merchants – a parable for healthcare

“The way we do patient and public engagement is not working – it fails to have any real impact because it is outmoded and unfit for purpose. In part, it was never designed to bring real change, but to buffer it and maintain the status quo. Now, if we really want solutions to our current healthcare challenges, this all needs to change.
The task is fourfold:
• Learn to value what people with life changing illness, injury or disability (IID) can bring – see patients as partners
• Change how engagement is done – rethink engagement processes
• Support people’s capabilities to better work together – develop the right skills
• Develop new opportunities for people with IIDs to influence decision making – create new roles”. Gilbert D. 2016. Stop Kicking The Cat. https://futurepatientblog.com/2016/02/13/stop-kicking-the-cat-how-patients-can-help-shift-the-rule-bound-culture-of-the-nhs/

___

 
Once upon a time, in a far off land, those of us who were unfortunate, weakened and damaged were banished to the harsh and arid Valley of Despair. There, we crawled alone to find caves in which we could live our days and suffer through the cold nights. We were changed, frightened and alone. What we had hoped to be, we could no longer be. What we could do, we could no longer do. Who we were, was no longer who we would be. We were refugees of mind, body and land.

Those of us that survived – many did not – did the best we could. We eked out a life in the harsh terrain. We learned to be creative to survive the everyday bleakness – to forage for sparse and strange plants that bore orange bitter fruit, to bear the twists of our cruel minds that woke us at 3am to the bloody cries of wolves. And to do the best we could to adjust to the terrible blackness of the cave that was now our home.

Over the snail-like years, we came to explore the depths of our caves. We discovered pins of light in the walls. We chipped at the walls to yield crystalline and asymmetrical jewels. Of course, we did not call them ‘jewels’ at first. They were uninteresting – we knew they had no value – the search was only to bide time in our intractable boredom. And that the habitual and jittery digging was something we had to do to escape from the brutalities of our condition.

We came to remember tales from our childhood. Mothers at the bedside telling of the poisonous power of the ‘Strange Cave Stones of Madness’. That the cure for this cave-borne madness (ironically) lay only in the power of the Kings (those very same who had banished us). So, we knew our touching these stones was itself a risky business. But we had no choice. What else was there to do? Our very brokenness led us to delve into broken things around us – we yearned connection, with ourselves, with others, with stones, with the world.

Some of us started tunnelling under the rocks in our cave – we mined for treasure, though we did not know it. Some strange force kept us going, and kept us tapping with rocks, digging, exploring. We began excavating under the floors of the cave and unearthed such luminous and reflective objects that we stood amazed and bewildered by what we had found. At first we thought of them as devilish rocks – that they would destroy us further with their ferocity of colour. But we still collected them, as if we were driven by the very forces that had once banished us. We could only go deeper.

And then, one or two of us began to question what we had been told. Remember that this was happening across a vast Valley Territory – all of us were mining and digging in caves that we felt were isolated from each other. Though sometimes in the middle of the night, we wondered whether the cries of wolves sounded somewhat human, like baby cries, and we dreamed of fellow cave dwellers not far off.

What if these stones were precious? One or two of us began to polish the jewels and were amazed to discover that the act of polishing changed their colour, they became reflective – we saw our own true faces for the first time in years – shaded in amazing hues of violet and gold. We were changed from what we had been, surely. But some of us saw a kind of mysterious beauty, as if our endeavours had actually polished us! We glowed.

Now I see we learned courage, resilience, creativity and the capacity to hold a light within ourselves that was more than what we had before – this is the paradoxical vision that lay behind the journey and discoveries.

A few of us began to wonder that we were still alive at all. That there was something wrong, not with us, but the world around us. Perhaps the banished had a story to tell, maybe we had found something secret that we needed to share. Could the jewels be precious to others, and not just us?

If only the market dwellers, the old Stone Cutters, the citizens and the elite in the market squares would see what we had to bring, then everything might change. If we could share these jewels with others, everyone might see themselves for what they were – reflected, in-depth, human – in these mysterious rainbow jewel glows. Surely we would be welcomed?!

A few of us set off from our caves, excited and terrified. But our legs were weak, and our carts rickety. We were not able to get far. The heaviness of our load of jewels was almost unbearable, the horses we tried to harness would not pull in the right direction. There was no support from other strangers we met on the road. Though we begged them to help us, though we extolled of the virtues of our load, they would not believe us (though a few villagers stole our jewels in the night).

What kept us going? I am still unsure. It was much to do I think with the fellow Jewel Merchants (this is what we began to call ourselves) we met from time to time on the lonely, winding roads. We shared stories of our plight and were amazed. We did not know that there were others like us who had been so trapped and lonely, and who had the same dreams.

And so we started journeying together. We did not know where we were going precisely. The roads had changed. They seemed to loop around on each other. They were bumpy and led by treacherous ravines and up bleak hillsides. We stumbled and pulled each other up when we fell. And, all the time, we could hear far away the sound of the town. Once in a while, we thought we were near, only for the next day to see our hopes dashed and the silence fill the countryside once again.

Oh the many times we almost gave up! We fell into telling each other things would never change. And a few tried to get back to their caves, or threw out the jewels from their cart, despising their abhorrent erstwhile dreams as nightmares or fantasies. We were so close to the end. In both senses of the word!

And then one night, we camped close to a river. And a few of us fell to telling our tales and shared them under an elm tree. And more and more of us came – it was like magic. First one merchant appeared and then another. And soon there were hundreds of us. It was like some sort of inauguration – meanwhile our carts seemed ablaze, it was as if the jewels were being polished once again like new under the glow of our fires and a large orange moon.

We shared tales that we had recently heard – of Stone Cutter market stall holders beginning to try to sell the jewels they had stolen from our friends; of a few of our fellow merchants that had broken through to the town somehow and begun to spread the word – that we were coming; of fights and arguments about the worth of the old stones versus the new; how laws were being re-written; how some merchants were being cast into new prisons; tales of the danger of jewels were carved on the temple walls. They drew pictures of us with long noses, mad eyes and wiry bodies. Some said they pitied us and wanted to cure us with their stones.

And that was when we decided we had nothing to lose. We could see they needed us as much or even more perhaps than we needed them. That our travails were worth the struggle. That there was a different vision…

I wish I knew the ending of this tale. We are where we are. A few of us have stolen in and preach – but more importantly try to act out the kindness we have learned – in the market place. We are still isolated and often alone. A few of us have managed to set up stall, and a few of us have exchanged our jewels – albeit it at a lower price than their true value. We do this to spread the news. No, that sounds too religious. We cannot do anything else any more.

It is not easy. But we are beginning to meet more regularly on the hillsides. And every time we do, we feel ourselves strengthened. And we notice that our jewels glow more brightly.

We know there are many still on the edges of the towns, setting up temporary villages. We know there are more yet still in the valleys and the caves. But we know too that the Jewel Merchants are journeying as we speak, that they – we – bring something more valuable than all stories, all words and all separateness. Let the tale and jewels be shared.

 

 

 
© David Gilbert, 2017

What’s Your Dog? Dealing with 2017 and all that

What’s your dog?

There isn’t resolution. Just a sense of need. To be as kind as possible seems the only thing worth doing. In my personal and professional life. And it is the only thing that seems to be a sensible anchor and effective, efficient mode of being in the confusion that is re-entry into my work, into a troubled 2017, and at home. And perhaps even toward myself.

But I rant on Twitter. I can lapse into assumptions that all Brexiteers are ignorant racists. I shout at my kids. I despair at the world. I cleave to safe opinions about how the world and people work. I am emotionally triggered by anything that Trump says.

It’s never my fault that I am triggered – of course :-). it’s always the other person’s. And the more that people don’t see this, the more the sense of wrongness and of being wronged is reinforced. And round and round I go, now with an additional note of self-pity and reinforced powerlessness. Sometimes we have been triggered intentionally. It is a conscious game that the haters play – People like Trump, Farage and the rest of them know this. And they revel in our reactions.

Sometimes it’s a less conscious game.

Whatever. The effect is the same. Every time I am triggered, I feel my life force drain away. When destabilised, we hate back. This is the world we risk exacerbating.

Some say mindfulness is apolitical. I disagree. When I am centred, when I have slept, when I have eaten, when I breathe in response to provocative opinions. When I can sort of see where people are coming from – even if their values aren’t mine – I am more able to respond in a way that is congruent with my own values; and to explore and question, build relationships and, yes, say things that are more sensible! I allow myself not to be swept aside by gusts of emotion and don’t serve to reinforce the yes-no, black-white, arguments, fights, wars.

And if I respond in line with my true values – particularly with kindness, curiosity and humility, I sleep better. I am no more effective when angry – actually, less so.

In my work, I see a lot of justifiably angry people – patients, users and carers who come to decision making tables with their jaws and fists clenched; health professionals (clinicians, managers, admin and non-clinical staff) tired and embittered by frenzied ways of working… And good people with good intentions turning on each other.

More than ever this year, we need to be of service. I have woken up that this is less about me and my ego (though that is still powerfully there). But if we allow ourselves to be dragged into too much catalysed anger, we risk not just our own sanity, but the future of our health and social care service, and of the planet.

How we react to provocation matters. As I wrote the above, I looked up at a football match. One player kicked another. The other player kicked back. And only the latter was booked. QED.

We need quick, small, re-kindling, reminders, to break the habitual response….

Like a dog.

This morning, I was tired and grumpy and let loose my frustrations. I went for a walk, and a stranger with a dog walked past. The dog wagged its tail and allowed me to stroke it. I talked for a couple of minutes to the stranger. I came back and apologised for my grumpiness and explained why it had happened.

And animals change relationships. There’s ‘evidence’ for that, as well as testimony. Yesterday, I was in a café. An older woman was sitting in a corner and seemed to be upset. A stranger walked in with a dog. You can guess the rest. By the time, the woman got a second cup of coffee, she was smiling. Two days ago, one of my colleagues brought in her dog to the office. It changed the dynamics. I got more done. I think we all did.

I am more tired and more grumpy these days. 2017 will make things worse. Find your way of dealing with it soon.

What’s your dog?

 

 

If you liked this blog, check out my others at futurepatientblog.com

© David Gilbert 2017

A Few Poems From 2016

A few people wanted me to put together some of my poems – old and new; some about health and healthcare (some not) – in one blog. So, here we go. Hope you like them.

___

When Mum Describes a Horse

When mum describes a horse
she has seen from her low bed
galloping across the white wall
or through it

we cough and fetch another
glass of water, slip back,
resume the wait and look past
the ward to where

the prints of hooves
on the muddy path
tracking the edge of the car park
are heading home.

Riderless, walnut-brown
we see it
race to the lip of the hill
and turn a final time.

____

Folding the Sheets

I loved to help my mother in the garden
take down sun- and wind-dried sheets
from the sagging washing line, propped up
in the middle by an old wooden pole.

She’d unclip the clothes pegs one by one,
drop them in an empty terracotta pot
and offer me the edge of a crinkled sheet.
We faced each other: partners in a dance

peering across vast cotton waves,
arms spread out, gripping our corners,
watching each other’s every move
bringing together the opposing leaves,

folding, refolding… until she reeled us in
to meet halfway. She kissed my nose
and whisked the bundle out of my hands.
The linen piled high in the wicker basket.

Now I can mirror her with eyes closed,
senses narrowing on the task and line,
opening up to the sound of sparrows,
from the branches of the damson tree.

____

The Liberian Pygmy Hippopotamus

These days, the Preferred Place of Care
(or PPC) according to academics
is The Home or The Hospice.

Dad prefers to ignore
the finality of words
and officiates from Bed 6 on Ward 11E

summoning us
with parting gifts
as we gather

in comfy chairs provided
by the Project Coordinator for the Patient Pathway (or Matron)
and Betty, the cleaner.

He doesn’t want to go home.
He refuses the sweetened pleas of bed managers
to go home. This is home.

Contained by the, at last, certainty
of the rhythmic swish of the morphine pump
and ward rounds.

He swears the profile of a golden lioness
rises glowering from the trees
overlooking The Heath

and the paths where we handfed
Nuthatches, Chaffinches and Robins.
Fewer of them now.

He is more tired today.
I feed him slow spoonfuls
of leek and potato soup

tell him that Samuel
went to the zoo yesterday
held out his hand to touch

the Liberian Pygmy Hippopotamus
almost wiped out by civil war.
That Adam wants to bring it home.

____

The Jab

I slid between rooms
Severing wires

Unscrewing bulbs
And scissoring magazines

Limbs became heavier
And heavier to operate

I sat cross-legged
Fending off evil

While the bedroom wall
Grew dangerously thin

The black house began
Its whispering plots

My brother was sent
With poisoned Jaffa Cakes

Then came the scraping
And bleeding sound

Of thousands of chairs
Falling over themselves

Midnight’s rush
Of telephone calls

Rose wailing and wolf-like
Four men arrived

Serious and muscular
The quiet jab came

And my mother’s voice:
Please look after him

____

Close Obs

I’m curled into a ball
on a thin mattress on the floor
covered with a crinkly nylon sheet
smelling faintly of sick and piss.

Outside the heavy brown door
sits Len, muscly, tanned,
with the Mirror crossword.
Not much older than me,

he’s done his fair share
of hurtling down corridors
readying needles full of Depixol
to slam into the arses of lunatics

like me I suppose.
As my sobbing slows
I hear him humming tunelessly
and clicking the end of his pen:

‘Mate, your mum said
you didn’t use to be such a dickhead.
Let’s see. Try this for starters:
French for dead-end, 3-2-3?’

_____

The Swan

She would be carried down dark roads
like they were rivers. Adrift on a wild mind
far from others, in worn out red slippers
and flowery unbuttoned nightgown. God knows
where Gran might finally wash up. We didn’t.

So mum sat up late in the unheated lounge
unlistening to The Swan, by Saint-Saëns
that dad put on to soothe her, biting
her lip and gnawing the quick of her nails
tea lukewarm, on guard for the call

from Harrow or Moorgate Police Station
following reports from a drunk accosted
by a skinny old lady ranting in German
or from a cabbie who’d tried to make peace
and been thumped repeatedly over the head

with that umbrella she carried everywhere
even when sunny. Once, she was found
cowering, taunted by teens in hysterics:
Loony, loony, mad fucking bitch.
And when dad brought her back, she’d sit

frozen, bolt upright, stiff, beaten
hollowed out by the ravages of thought
the kitchen drained and everything so still
I could hear the wind and the birds
begin to sing. Her hair wet, face white.

____

Bedsheets

The low slung bundle of thick, frayed, red, green
and grey wires that ran between the old stroke wards
curving up to the brown fuse box near the top
of the towering wooden pylons, then slouching
down and across the car park to disappear behind
the temporary canteen in the portakabin
has gone.

Once I came this way
with the matron from the psychiatric ward
to hunt for spare bedsheets. And on the way back
I stared up and thought to cradle myself
amongst their woven threads and pump of pure
energy that might wrest me from another night
on those crackling bedsheets.

These days, there stands
the maternity unit where my sons were born.

____

The Baby Starling

When the church bells stopped
and the empty courtyard filled with birdsong
I thought of the baby starling without a tail
that had fluttered into the Italian restaurant

and startled the woman
who spilled minestrone onto her best dress
then threatened to send them the laundry bill
while her friends killed themselves laughing

and the way some children
born in towns, never get to the ocean
and how I could have taken mum
to Vienna one more time. And how

when everything turned out alright again,
you looked at me and said: There, you see?

____

The World Is Full of Toilets To Cry In

Old smelly ones of course, uninspected, with cracked floor tiles, damp inglorious seats and broken locks, where one tap gushes forever hot and the dryer doesn’t work, even if you bang it several times. And where you’re not so poorly as to fail to notice the plethora of metaphors.

I can feel more at home in posh ones, conference centres, government agencies and four star hotels (you can sometimes sneak in if you’re desperate) where Mozart streams in from unidentifiable wall speakers and the soap and incense sticks, in your justifiable fury, are easily nicked.

There was one (after she left me) where the urinals were ringed in a hazy ultraviolet light like the one in Captain Scarlet and the Mysterons (though maybe I’m wrong. She said I was a lot of the time. Maybe it was white). It could be some sort of futuristic antiseptic. But it had me so captivated that I forgot. For a while.

But mostly I prefer the everyday ones, in railway stations or shopping centres, just about clean enough mostly, to let you know you’re alright in the end, not too shiny to make you feel awkward for feeling so rubbish. And at least you’re never alone. I don’t mind paying 20p for one of those.

1962 (Little Bird)                                                                                         

She looks down at me. Garrincha
The Little Bird
wins the World Cup for Brazil.
In a storeroom on the third floor

in Ramleh Prison, Tel Aviv,
next to a makeshift scaffold,
a chair is kicked. Eichmann hangs
and his ashes are scattered over the Mediterranean.

Dr. Ronald A. Malt reattaches
the severed right arm of Everett Knowles (age 12).
Later he’ll be able to move all five fingers
and bend his wrist, later still play tennis.

Marilyn Monroe is found naked.
Dr No gets rave reviews.
London trolley buses return
to the garages for the last time.

Kennedy is late
for the first Trans-Atlantic Telstar satellite image.
They show a baseball game instead –
the Philadelphia Phillies versus Chicago Cubs.

Rod Laver beats Roy Emerson
in the French and US Open,
Martin Mulligan at Wimbledon
(6-2, 6-2, 6-1)

Trouble brews over Cuba.
Eight planets align for the first time in 400 years
Nelson Mandela is arrested.
Ringo replaces Pete Best

A bear becomes the first creature
to be ejected at supersonic speed.
An Air France 707 crashes on takeoff.
130 dead.

Assia meets Ted.
Crick & Wilkins determine the structure of DNA.
Lee Harvey Oswald arrives by train in Oldenzaal
then leaves from Rotterdam on the SS Maasdam for the USA.

Three convicts use spoons
to dig their way out of Alcatraz.
My mother looks down
and calls me her Little Bird.

(c) David Gilbert 2016

A Touch On The Arm: returning to work after mental health problems

I wrote a poem once about the lack of flowers on psychiatric wards. We who are unwell in the world of feeling are doubly unrecognised. The hill we climb back to wellness is also jagged and steep with zig-zag turns.

The summer was scary. Symptoms I thought buried, returned. A Patient Director who had relapsed to patient-hood. Ironic. Fitting perhaps? I have blogged about the ‘emotional labour’ of being a patient leader before. Words as ghosts come back to haunt.

Post-recovery in the 90s, I lied on my CV about the time I was ‘away’. I called it ‘freelance consultancy’ (boy, was I ‘freelance’!). Disclosure was an impossibility for my career. Like it is for many others. Stigma was (is?) prevalent.

This time, I did not lie. This time I had an employer who not only supported my recovery into wellbeing and my role, but leaders who expressed their love for me. Let me repeat that word: Love.

I also believe it is easier for someone who is in a senior position to be open – we have already gained much professional confidence through our status, and have some credibility. It is unlikely (though I still have this story in my head) that respect for what I have done will dissolve because of what happened in the summer. But what of those more ‘junior’ (not a phrase I like, but you know what I mean)? Can they be as open as me? Hmmm…

I live in hope that my organisation manifests equal love and support for others who are unwell in mind and body. I will be looking for evidence.

Recovery is a dangerous time

A few things though, before we get too dizzy with accolades. What’s my learning about that difficult step back into the office?

I have also written previously that recovery is a dangerous time. When you get back on your feet, they are wobbly. I have a picture of a baby gazelle in my mind. The echo of stifling thoughts and uncomfortable feelings have not disappeared. You are easily triggered. The narrative you have told about what happened – the usual bullshit (I am no good, a failure, can’t do the job, etc) are rocking around. You may ‘look’ better. The scars are invisible and still sore.

When I got back, I was hugged. I was bowled over by affection. One friend who had also been away with a physical problem (of course with emotional consequences too) asked: ‘Did you get a card from the office?’. I said, yes of course. And flowers. And wonderful chocolates. ‘And weren’t those messages from everybody amazing’? She went on. ‘What messages?’ I said.

Then I realised what had happened. The organisation, quite rightly in terms of confidentiality, had not disclosed my illness to others. I had not had the honest conversation with someone to say ‘you can tell people XYZ about what happened to me’. Hence I got a card, but not one signed by everyone.

I now remember that when I got that card, with a ‘love and support from all your friends’, it felt like I was disconnected from all those people who could have voiced their support explicitly. That extra layer of protection further isolated me. I should have said something. That lack of connection made the return to office more unknowing.

The touch on the arm

But here’s the main thing: One or two people came up to me and gently touched me on the arm and asked ‘are you OK’? That touch said so much. It conveyed deep concern, love, kindness. And also uncertainty – not about how I was – but about how to open up a conversation about my mental wellbeing.

To me, and I may be wrong, it said ‘I am here for you, I am happy to listen, happy to be open, but I am unsure how much you want to share’. We needed a way of holding a safe conversation – on my terms of course, but also one that recognises the limits of what others are comfortable with.

I talked to some people who, courageously, said ‘I don’t want to treat you with kid gloves, or patronise you’. We went on to talk about how to have a proper conversation about my unwellness and capacity to take on the refreshed workload. We agreed that if I was hurt or triggered by things they did or said, or if I felt that work was too much, it was my responsibility to say something. And that they would be open to challenge too. Can your organisation or the people within it do this?

Opening

And then there were the people who sidled up to me to talk about their own vulnerability. For me, there are only two things that guide me in my life and work any more – do your best and be kind (to yourself and others). And it is in these sorts for encounters – furtive, gentle, open, adult – that I feel I have most been able to give of myself. By opening up, people have opened up to me.

I know many reading this will have experienced this opening. It is one gift we bring from the cave-world. The touch on the arm is the beginning of something different – it is a strike of connection and light.

As a gibbering and convulsive 2016 comes to an end, what else can we hope for? Keep on doing your best. Keep on at being kind.

Thank you to all my work colleagues – friends – at Sussex MSK Partnership and Here. This is my touch on your arm.

 

 

 

(c) David Gilbert 2016