Patient Leadership Could Help Solve Workforce Issues

The Patient and Public Engagement industry has been sidetracked.

For many years, patients, users and carers have been led to believe that their voice matters. And that by taking part in focus groups, telling emotional stories at conferences and being a ‘representative’ they will make a difference and that this translates to being ‘at the centre of the NHS’.

I have long argued that these transactional engagement approaches are outmoded, preserve the status quo and buffer us from power. See for example this article 

At the HSJ Summit on Mental Health, I was reminded of two further things. Firstly, that you need to sell your work as relevant – “if the next government believes in choice rather than rights around mental health, use the argument of choice… you can sell the same thing”. Secondly, speaker after speaker said it was workforce issues that kept them up at night.

So, we need to sell co-production as a workforce issue.

Of course, it is other things too. It improves outcomes and experience. It helps with improvement and transformation. It shifts power (don’t shout too much about that one, sneak it in).

How is co-production a workforce issue?

Well, firstly, there are three embedded models of co-production doing the rounds that I rather like. One of course is our Sussex Model of Patient Partnership, based on a triangular dynamic between the role of a Patient Director (critical I think), pool of Patient/User/Carer Partners involved in improvement and governance and a Patient and Carer Forum with formal oversight for patient experience and engagement work as well as other things.

The second one is outlined in the book, The Patient Revolution. Karen Owen’s chapter on HealthMakers describes a model whereby people who have been self-managing their own condition (of whatever sort) can become peer support workers and then enter the strategic realm should they wish.

Meanwhile, in mental health, the rise of peer support work as an acknowledged paid role (albeit often poorly paid) offers rich opportunities. For example, Central and North West London (CNWL) Foundation Trust is putting in place an integrated approach and thinking through how already embedded peer worker skills can be extended so that people take on other roles (coordinated by Melanie Anne Ball, their Trust-wide Peer Support Lead) (@melanieanneball).

What all these have in common are:

  • Valuing the wisdom and expertise of what we bring – the jewels of wisdom and insight from the caves of suffering
  • Creating new roles and opportunities for people affected by life-changing illness, injury or disability
  • Developing embedded approaches that align with corporate priorities
  • Allowing people affected by IID to more directly assist in improvement work
  • Supporting ‘career’ progression
  • Building capacity and capability alongside development of roles
  • Implicitly changing and transforming the traditional ways of doing engagement work
  • They are applicable across all health settings – mental, community, acute – and across all sorts of local organisations (provider, commissioner) and national level (regulatory, policy-making, NHS England, etc).

Peer support helps deliver services. Patient Partners involved in improvement and governance helps drive change. These two elements need to link up.

I would propose that every health and social care organisation looks at these three models. And with the help of people like us (Lived Experience Practitioners, Experts by Experience, Patient Leaders – call us what you will) develop integrated approaches to co-production.

But here’s the crunch: Workforce shortages and resource pressures mean that co-production could really help.

I am not advocating for cheap peer support to displace roles that should be done by others. I am arguing that at each stage along this new ‘career pathway’, this work can help….

  1. By designing better and more coherent self-management programmes, co-facilitated and driven by Patient Leaders, etc. This would stop attrition rates in professionally designed and driven programmes, and have long-term consequences for well-being.
  2. By having a high quality peer-support workforce (able to offer ‘health coaching’ skills and/or signposting to well-being functions) this obviously helps improve outcomes and experiences.
  3. By developing improvement roles so that patients become, for example QI partners and improvement advisers, we would better target and implement co-designed interventions. They would better focus on what matters.
  4. By having patient leaders in governance roles, there would be enhanced accountability and better quality decision making.
  5. By having a Patient Director role, the work above would be co-ordinated and would actually happen.All this would help improve outcomes and people’s experiences as well as have deeper effects on quality of decisions and delivery. This work helps staff.

Another benefit of true co-production (that I have seen time and time again) is that staff morale lifts and through the presence of patient/user work, staff become re-connected to the passion and values that brought them into the work in the first place. This work rehumanises healthcare. This work helps staff.

Good engagement impacts upon staff engagement and staff well-being. This might have – a hunch, but a strong one – a significant impact on recruitment and retention. This work helps staff.

Bureaucracy and the chasing of frenzied regulatory targets reduces – this is also a hunch at the moment, but I am seeing it happen in a few places – patients in more control of decision making ensures a focus on measuring and working on what matters. We need to reinvigorate the workforce with a cultural transformation that focuses on what matters. This work helps staff.

And if this happens in commissioning and regulation, at policy and practice level, we have a true patient revolution on our hands. This work helps staff. It transforms cultures in ways that all the empty rhetoric at well-meaning conferences fails to do – because the same old tired people are in charge (I mean well, some of them are very good!).

This work helps the chief executive. Our dream of patient leadership turned into everyday practice might allow a chief executive to be released from their nightmares. Remember, they come to work because they care too.

Co-production is a workforce issue.

 

—-

 

© 2019 David Gilbert

 

If you liked this blog, please read more at www.futurepatientblog.com

 

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From Job-Job to Rock n’Roll-Role – The Sussex Model of Patient Partnership

We have nine paid and supported Patient and Carer Partners (PCP) at Sussex MSK Partnership (Central). This, in addition to bespoke engagement work and gathering and learning from patient experience data.

Yesterday, I spoke to one of the nine: “I was in the waiting room – was I a patient or a patient-partner? I was now thinking about improvements that can be made. I then went with a friend to another hospital where we seemed powerless and told him about the patient and carer partner role… he was fascinated”.

I suggested she write a blog and that this is used to discuss the role at our next meeting. We also talked about her re-using her extraordinary research brain to look into availability of acupuncture in the NHS and locally – partly as a way of developing relationships with our clinicians and partly as a way of gaining system knowledge and thinking through local and national practice.

I suggested to another PCP that she becomes a mentor for a health professional. “That’s turning the tables, isn’t it?” she said. She has been taking part in observations of clinics and assessing the quality of shared decision making, alongside other PCPs and peer-clinician observers.

The project has been so successful, we will probably roll it out into other clinics, and maybe revise the assessment process and measurement tool so as to be more patient-centred. The other day, the lead clinician for the upper limb team, the extraordinary Helen Patten, agreed to patient-centred observations being on a level-playing field to peer-observation for appraisal purposes.

As a result of this project, this particular PCP has struck up a close relationship with the clinician she observed who had found the patient-centred observation uniquely valuable. “Patients as mentors of clinicians as the next step….?” she paused: “Why not?”

Another PCP has been invited by a clinical lead to participate in work on staff inclusion, beginning by looking at experiences of BAME professionals. I am going to ask this PCP whether that experience can be widened to look at patient inclusion. This will expand on last year’s work on accessibility and information provision.

Meanwhile, another PCP is going to help us analyse qualitative data from our patient survey and join a project on improving our appointment letters.

Another more experienced PCP is closely involved in the roll-out of local plans for advanced practitioners to be ‘First Contact Practitioners’ in GP practices. This has taken her deep into plans around work-force and quality assurance. These are issues she is actually more qualified than most to take part in, given her professional background, as well as her personal experiences of care.

Thus, PCPs are beginning to develop their own portfolio of work. This portfolio builds on their ‘frozen assets’ (expertise from a former life before illness) plus the ‘jewels of wisdom’ from the caves of suffering (expertise from patient-hood, including leading with vulnerability, awareness of power and trusts issues, primacy of healing relationships). These are things we discuss in the book ‘The Patient Revolution’.

The PCPs are also developing a set of collective priorities. These are likely to include a closer focus on pain services and physio and a patient-led project on ‘coordination and consistency’ across pathways.

Once these individual and collective priorities are decided upon in early 2020, we will co-design a learning and support programme that focuses on ‘core skills’ (e.g. bridging personal experience for strategic gain; communication and relational skills) and ‘context-specific’ skills (e.g. how to move from being an ‘improvement partner’ to ‘governance committee role’).

The vision is for PCPs to develop a ‘career-pathway’ – from judicious use of own experience narratives (i.e. in learning and education) through being ‘improvement partner’ through to ‘governance advisor’. NB. We now have PCPs on two MDTs (upper-limb and lower-limb) and will expand that to four MDTs (pain, physio) in 2020.

Of course, this ‘pathway’ can go the reverse-route, and encompass other roles, such as on recruitment panels, undertaking research, being a mentor or moving into peer-support. 

The benefits of our work are becoming visible – our recent CQC ‘outstanding’ report included specific praise for our model of Patient Partnership. More importantly, we have seen changes in policy and practice, improved self-management programmes, changes to shared decision making approaches, improved access to clinics, better user experiences in waiting rooms, etc etc.

But the most satisfying thing for me is, I do not need to sell the work. Staff are coming to us. That shows how far we have come.

Last week, one of our PCPs hosted a celebration event for the CQC ‘outstanding’ assessment. Next week, two of them will meet with Simon Stevens in order to demonstrate that social enterprises should stay included on procurement frameworks.

But aside from the posh stuff, three PCPs will be expert panellists at a phsyio learning day – the keynote morning presentation in front of about 100 local practitioners and admin staff.

As one of our newer recruits to the role of PCP said: “I am not used to being encouraged to delve into my experiences of having a long-term condition in a positive way and people wanting me bring that to the table. I am slowly coming to terms with the fact this is not a job-job, in the sense that I have X hours a week to do Y. That we can influence things and find ways to match our passions with the needs of the organisation. And vice-versa.”

It’s not a job-job. It’s a ‘rock and roll-role’.

© 2019 David Gilbert

If you liked this blog, you can find others at www.futurepatientblog.com

The Patient Revolution – how we can heal healthcare’ is published by Jessica Kingsley Publishers.

 

 

 

The Necessary Twilight

I am starting to write a book that will include my psychiatric experiences in the early nineties, a time that also heralded vast change in mental health policy and practice. The book will interweave the personal and the political, and will consist of prose and poetry fragments.

This is my first attempt at writing a fragment.

I would welcome any feedback.

Please be warned. This is not easy reading.

—-

I went to bed as early as I could, sometimes before the night shift at eight arrived. Each time I knew that rest would not come. That to go to bed early would make things worse, the nights more interminable. That to lie awake in a psych ward with the shouts, the groans, the eerie laughter, the sounds of eternal strangers would always be an unaccustomed hell.

But each night, for weeks and months, I tried to go to bed early. As if one part of my brain could not cope with the realisation that another would continue the torment into the necessary twilight.

The three inch mattress would slump and make my bad back worse. But I did not care about my back. I slipped between the squeaky nylon sheets without having brushed my teeth. I did not care about my teeth. I would not care for my teeth, my hair, my stomach, for another three years. I would swell up to 14 stone with side-effects of this, that or the other.

And I would lie with my head on a pillow embossed with ‘Property of The Barnet Psychiatric Unit’. The back of my head burning with the imprint of those letters. One day, there would be an internal tattoo.

My mum had brought me in an easy-read book, “Oh, I am sure you’ll enjoy this one, she is such a good writer and uses pretty simple words too”. My mum, battered by the years of her son being gone from her, had brought me a Rosamund Pilcher novel that she had enjoyed. Easy fare. She had seen my descent from being able to devour Solzhenitsyn to not being able to read The Beano. That night I tried, I promise mum, I tried. Every night, I tried.

I picked it up. “She met….” I read aloud.

My brain would not engage with what was on the page, my eyes would not rest with the words, they would tear away to an inner place of hell and dwell there, before triggering my brain to remember that I was still on a psychiatric ward, and even were I to accept one word into the empty space that lay beyond my fizzing neurology, that word, or those words would only cement a recognition that I was a failure – once able to read Solzhenitsyn. Once able.

“She met…” I read aloud. My loops. My god, my nerve-racked rhythm of disconsolate abstracted pain.

After about thirty seconds of dutiful attempts (I tried mum, I tried), I threw the book at the wall. I had not got beyond the first paragraph. And the entirety of that paragraph had been forgotten. If my eyes had taken words in at all.

“She met…” I screamed. Romance, sentiment, beauty. I neither belonged there, or this gated hell. And beyond that: Words. Reading. Writing. The only thing I had ever loved – the only thing I ever wanted to be, a writer, beyond purpose and my focus. Like the twist of thousands of starlings in the dusk.

The nurse Siobhan appeared, as if she had been wired to my efforts. “Your mum told me about all the things you used to do before you were ill”. Here was another staff attempt to boost my soul, as if a soul was a balloon simply to be pumped up for the abandoned party: “Such a waste, you here, when the world needs you”.

Kind words were the worst kind of words. Encouragement the worst kind of support. Optimism the very worst of the well-intentioned efforts of the normals. Hope not far behind. Comparison lies at the heart of all such bereaved sentences. Then and now. You and them. This and that. Here and far away.

I told her to fuck off. I wanted her to rescue me. To love me. Fuck off.

I would forgive her now. I would forgive her and her training and her qualifications. No amount of that would have helped. I would forgive her if I knew how. We were both locked into what we knew. Stay with me. Fuck off. Nothing is enough. Give me. Give. Please. Fuck off. You have no idea. No. Idea. Stay.

And the terrible and unforgiving night lay ahead. She retreated behind the brown double doors, and I saw her shadow retreat down the corridor.

I got out of bed, picked up Rosamund Pilcher, threw it into the bin. Fuck off mum, I thought. How dare you wipe my nose in my impossibilities, how dare you make me throw up emotionally on your pages. And what of easy romance, what of easy fare? There was to be no easy fare.

My mind picked up the pace. Kill yourself, don’t, kill yourself, don’t, kill yourself. Into the mind-fucked extinguishing emptiness. I slipped back into bed. I had killed four and a half minutes of my life. Now I lay, looking up at the neon strip lights against the vast slabs of ceiling. How many nights did I look up at that ceiling? The one mercy is that I have forgotten many of them.

But even remembering one is enough to make me fear the bad dreams I will have tonight for remembering this at all.

 

—-

(c) 2019 David Gilbert

 

 

The Patient Will See You Now – Small steps towards valuing yourself

The stories we tell ourselves, particularly those about ourselves can become fixed. Often almost invisible and deeply held. Only surfaced when we react to something that triggers them.

I have always under-valued myself. And notice a queasiness when others seem not to value me, or when I see others under-valuing themselves. No wonder I am in the patient leadership business.

But we have to rewrite those scripts. That starts by noticing how we play along – when we withdraw (fester and sulk). Or turn aggressive.

After becoming a Patient Director and writing a book, some things have changed. I am more assured about what I have to say. And people say nice things, which is, er, nice. You would have thought I have stopped listening to the insecure bits of me – fat chance! That is a lifelong struggle.

But…

Yesterday, I was doing an evaluation and for the third time, the person who I wanted to speak to did not answer the phone. He had given no advance warning again, and offered no apology. Then I got a text this morning, saying he could speak this morning. I checked with others as to how to respond and said no. I asked him to write his responses down and send them to me. I said to myself that my time was as valuable (even as a ‘lowly’ evaluator) as his.

This morning, I was on the phone to an international patient leader who totally understood my need to value myself. We got on famously and agreed that, if she was to pick my brains further, she would not want to suck them for free – she knew what that was like. She may bring back some money and resources, she may not. But it sometimes seems that only fellow patient leaders get this need to be valued properly.

This afternoon, after waiting to meet a ‘quite important person’ and having finally got the slot into my diary, she emailed and said sorry because she was meeting another big wig and this had to before xmas. I summoned up the courage to write an email back and say, in effect, ‘hey, I am important too’.

This time because it was a health professional, it reminded me of doctors not having time to ‘fit me in’. It also reminded me perhaps of another story I hold – that we patient leaders are not as important as ‘professional leaders’. Of course, my story may not be ‘true’, but it feels so. The best I can do not to collude with telling myself the old story is to stop being an actor within it. That is why I wrote back.

Meanwhile, back at Sussex in the (part-time) day job, our amazing Patient Partners are rolling their sleeves up a bit too. One of our gang has summoned up the courage to remind the local power-brokers beyond our service that she is astute in things beyond her ‘patienthood’ and is now entering some in-depth conversations in the STP arena around quality assurance and competency frameworks, stuff she knows more about than them.

These are small moments, but I have taken the time to process them (also critical in the non-stop world we live in). They remind me of my recovery many years ago from being in the depths – that it is small behavioural steps that slowly shift our self-thoughts. Thinking and feeling lag behind behaviours. It is uncomfortable to break old habits.

I am waiting for the reply to my email with trepidation – also a habit of mind. So, let us reframe that too – I am waiting with hope of a good outcome. And trusting that the doctor will recognise the courage it took to make that honest challenge.

Good luck with it. Be gentle with yourself, but a tiny bit tougher with others.

p.s. The response to my email to the doc has come back – she has been refreshingly honest too. No change of mind, but a transparent response. And she says she admires me for my truth-telling. Adult-adult. Respect!

 

© 2019 David Gilbert

If you liked this blog, do read more at www.futurepatientblog.com

 

 

 

 

 

 

 

 

 

 

 

 

Valuing What We Bring – an open letter to NHS England

 

Last week, our book The Patient Revolution – how we can heal healthcare’ was launched at an event at NESTA. There were 160 people there – patient leaders, clinicians, policy makers, and loved ones. The event was live-streamed and stimulated much debate on social media.

The book charts the stories of Patient Leaders – those who have been through stuff, who know stuff, who want to change stuff.

One abiding theme throughout the book is about how local and national NHS organisations systematically undervalue the ‘jewels of wisdom and insight we bring from the caves of suffering’. The book is receiving good reviews. I expect there to be transformation bla bla

Now, back to earth with a bump.

Yesterday, I received an email from The Head of Something at NHS England. It stated: “We would be keen to understand more about the approach you have taken in Sussex to involving patients and the public in patient safety to inform our work and, if you are interested, explore how you could be usefully involved in the development of this work”.

Finally, I thought! Then I carried on reading:

“In accordance with NHSE/I PPV expenses policy we would be able to offer reimbursement of any travel expenses and, depending on the nature of your involvement, a potential payment of £150 a day or pro rata – we are not, however, in a position to pay consultant fees”.

I decided to consult with others as to how to respond. This was as much to stimulate dialogue on a contentious issue as to inform my views.

After a lively twitter discussion on issues concerning payment and, after consulting with all the contributors in the book – five of whom got back to me within minutes expressing strong views – I penned the following.

I hope it further stimulates thinking about how the system better values our contributions. La lucha continua.

___

Dear J

Thank you for your email. On reflection, I am going to say no. I would like you to pass this email on to S please. My thinking goes something like this. I have worked for 35 years in and with the NHS, often for free. I am 57 years old, my wife does not earn, I have two kids and no pension.

A freelance consultant calculates his (in my case) wage by assuming that he earns a daily rate 150 days per year, the rest of the time is spent trying to find work. Out of that salary must come tax, work equipment, NI, pension constitutions, etc.

Thus, £150 per day, values my time as equivalent to a salary of 150 days x £150 = £22,500. Gross (pun unintended).

You are asking me to provide strategic advice, based on my own thinking over the last four years at Sussex, plus the entirety of a career spent devoted to furthering patient leadership and effective engagement.

You are asking me to provide consultancy advice. I am not here a patient providing feedback on his experience of using services. Nor am I being asked to participate in a workshop or such like. You are asking me for a large part of the contents of a brain that has worked overtime for many years on these issues.

I appreciate that NHSE developed a payment policy. But it is now becoming a millstone around patients’ necks. It was intended as a way of lifting us off the floor via recognition, but it has turned into a ceiling that we bang our heads against.

Given also that Directors in your organisation earn about £150k per year, I am being valued effectively at 15% of that value.

I am sorry, but if an organisation such as yours, with the resources you have at your disposal, is not able to be flexible, then I feel additionally aggrieved.

I have spent a long time supporting patients, users and carers to be valued properly, and I have to practice what I preach. While I am sure I could help you, I do not feel sufficiently valued by your offer to be able to take you up on your offer.

If you want to know a bit more, maybe you’d like to buy the book?

None of this of course should be taken personally, or be seen as coming from someone who is a money-grabber. I do a lot of work for free, mainly for people with whom I have a trusting relationship or for organisations who cannot afford a fee. I am afraid that at the moment NHSE does not qualify as either of the above in my mind.

I wish you good luck with the work, and if you were to reconsider your guidelines then I would be happy to chat (NB. Most guidelines, as NHSE knows, are there to be implemented with flexibility).

Kind regards

David

Postscript: This morning I received the following response.

Dear David

Thanks for letting me know your position and I’ve forwarded your email to S as requested.

Best wishes

__

 

 

(c) 2019 David Gilbert

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

If It Helps – why I need to write a book about the psychiatric system

The illness-laden dreams were back last night. I was sunk in a depressive stupor and telling my father he was a c&<t and that I wished he was going through it. I woke. The ceiling was dark, the birds had not started to sing. I had been back on the ward.

This new book I want to write is not a good idea. Why open the scars that have mostly healed? How ridiculous it is to be setting out to write another book, this time one that delves into my nightmares and what happened to me when I was ill. Why should I explore again and try to find out whether things are any better now?

My new book is just out – one that celebrates the rise of patient leadership. I should be celebrating and taking it all in. This new idea for a book is not a good one.

This morning, social media is awash with tales of racism, polarisation, volatility. Amidst the hubbub, voices rise about mental health and mental ill-health – arguments break out about the lexicon. More and more the public discourse on mental health rises like a tide. Surely this is a good thing.

A new app that supports people to maintain wellness is launched, whilst others wonder whether we have over-troubled our children by making them more aware of emotional distress. It feels like a lot of people who know little about suffering but have ‘ologies’ are fishing for likes with clever euphemisms.

And yet, I don’t hear the voices of the silenced. I don’t hear the narratives about what it is like if you have mental health problems at the further end of the spectrum, where you do need help, but are ambivalent about what is on offer, or can’t get it. To be trapped in a nether world of being too ill for an app, but not knowing much about the zone you are entering – whether you will ever return from the caves of suffering.

There is a lot of noise about mental health. But not much music. Serious music.

What about the underbelly, what about when you need help for significant and enduring distress, when you are bounced between pillar and post, between a GP recommending CBT and the desperation you feel at night, when you don’t know who will catch you if you fall, when the terror of your mind is inescapable. When nothing is on offer and the guilt and shame you feel for not being ‘helpable’ rises to a scream?

And what if you enter a psychiatric hospital – a dark world of containment and fear, the far territories of the mad, what happens in a world when no-one is looking and nobody gets ‘likes’ and there are no followers? What drugs might you be put on? What labels jammed down your throat. Is this incarceration or the journey towards breakthrough?

And then again, what of the cost of writing like this? To dig. To pick at the pock-marks of my arms, the scabs that grew over my injuries. To think of days on the grass bank by the psych unit amongst the litter of cigarette butts by the sodden benches overlooking the cemetery.

Surely someone else can do it. There are plenty of books out there, and good writers. I have healed, I am loved, reasonably successful finally. I need to rest and ‘self-care’

And then a short phrase comes to me: ‘if it helps’. If it helps one person to better understand the world of the psychiatric system. If it helps one person navigate a little the monstrosities of their mind, or how to deal with healthcare practice, if it promotes one discussion between people who work in services and those who use them, if it promotes one sentence in a policy that seeks to change practice…. Then it must be done.

Sod the nightmares. I’ve been through worse. And so have millions of others. I need to write.

8.10.19

All Inclusive – Seven poems about power, love and history

I have been in hospital (it’s been rough) and am now in Croatia – a scarred country. I have just read Sebastian Barry’s ‘Days Without End’, a book about the American Civil War and the best novel I have read for a long time. Being outside the troubled UK for a while has added to my thinking about the nature of personal and political strength and power, love/hate and history.

Some of these poems reflect a resultant shift in my writing I think. I hope.

p.s. I added a short eighth poem to the mix – one that feels more personal. Perhaps it is an epitaph on struggle.

The Terrace

Do not say so much. The bells of the old town
ring out over darkening water – we count
at least seventeen tolls. Each distant boat
is stilled with one dim light. All day the breeze
has shifted contrary to the earth. My mind

still rests with what we sang. We have always
moved towards each other like an inroad.
This evening’s urgent stars will stay our downfall.
We sit on the terrace taking our time – time
having taken us. Do not say so much. If we

are not for yet more knowing, then what now?
Catchments, keeps and walls. Tomorrow early
we will walk the wreckage of that citadel
where we died and lived and were raised
then take what was lost (do not say so much).

Song For a Friend

Our fears are real. They assemble
like grass. There is no guarantor
of love. None of us are ready

or will hold out. The flowers
are in flame. But here
you are held in the habit of dark.

And if this room were a chapel
a child would be with her mother
crying. The landscape is buried

beneath overlapping voices.
A man has cut back the lavender
and left drying clumps on the path.

The scent rises to our window
and I will not let you leave so easily
this sweated earth and scurry.

He tears and cracks the twisted vine
then piles the branches onto the bonfire.
We will wait until he lights it.

A Father’s Prayer in Four Parts

I.

I was with the quiet boy. The breeze took us.
Like it came out of nowhere. A swell
in the close hot air. A stray
wisp of pressure yielding. We had been

bent by heat so long
unmoved for hours. Then

it rose again. Tentative. Solemn.
Our heads bowed. As if the land had tired
of its lull. A breeze like a kiss
on that first cheek. Flesh we cannot hold. Foretelling
a flicker that will rightly disappear. Or a gale.

II.

Out where the boat’s wash meets the ebb
that whorl was all of us confused.

A sparrow landed on the chair
mouth gaping, shocked out from a smote sky
as if we could provide. No bird
now can muster a song

the wind again fallen to silence
like a sheer path between us.

I said: We all borrow from the breeze
by and by. You can be in all the right places
and never catch it. But

all I was thinking is for him to talk.
I just don’t know how to say anything right.
Please. What has been pledged
might be fulfilled. Let there be
a cold wall of opposition to the silent rule.

III.

I say this as a final breath
like something important, as if what we write
is worth more than the page it is written on.

The earth though bruises easily with hope.

Like when a knot untangles
or white lie at last found out, the breeze
this time, I don’t know when

became a wind became a gale. It was
a change, that’s all. Down here we slip
alongside the weather

and whatever comes our way.
Back then I’d bale heat from the sun
cup rain when it deigns to drop.

IV.

We are available. We are all of us
fathers of quiet boys

who must ride the swell as soon as stare it down.
The wind was up, an exuberant host

a mighty gesture of will, a prayer of old
returned, a memory too raw. Desire

footloose clambering towards a zeroing
in a rush as if saying sorry I did not know.

We fill out with the baying and barrelling storm
and then he appears face wet, this

boy all of a sudden lithe dark
dispossessed no longer mine not that he

ever was and talking talking.

The History Lesson
For Ronald Caffrey

I had a friend who raised his hand
at the re-beginning of term. Desperate
measures. Politics is power to young

Miss Dabrowska who hated me
and the way we sidled in to class as if
happy and bagsied leadership.

There was a blind pressure rising.
She was stunned by his answer, forgave
temporarily the exchange of porn across

the back row, gobbing in corridors, unfocused
insolence and our leaving of upturned
drawing pins on chairs as we left the hell

of her class for double physics. Echo it
softly in the boy’s changing rooms
during inevitable September when throats

are gripped. We should never have lazed
our way through summer for the fire was
not quite out. Power is what sleeps by dawn

as if for aeons, then slips like a whip thin
snake under levels of dust and rock
biding the eyeless time.

All Inclusive – The Road to Kupari

The sun has not yet tumbled over the hills,
rocks pull themselves clear of the water, the sea is quiet.
I ask a woman with a dachshund. She leads me

to the left. Then later you must turn right.
Says she lives in a local villa six months a year.
She is upright and must be over 70

clearly loves it here. I come first to the shell
of a villa. Clear headed thistles. An almost ordinary
village square. Naked palm. Burnt tree

split as if by no-blame lightening. How live
with such ghosts? Or just tell it like they are
men with guns and work to do

pulling out and on to somewhere else called home.
I take a curved high path then when it stops
realise it was a wall all along

and wonder whether anything is worthwhile.
Yet red berries grow amongst the burnt back bracken
and pinecones hang out over

where soldiers danced by the dead village’s dead.
I crouch then lie in an old gunner’s position
to get low and picture fallen flower heads on the path

against those hills, as if I am trying to say something.
Down below: The square is empty, withholding what to say.
On a stone, a witty lover has written: Your heart

will tell you where you need to go so listen to it always.
A couple lean on a silver Mazda convertible
and pose for a selfie. But what if

it doesn’t? Your heart, I mean. Sullen groves.
I am closer now. A Croatian crest ten meters high
on the sea wall overlooks the rhythmic coast –

a shimmering light – like war is no reason to stop
daubing the waters. And way up on the sixth floor
someone has leaned over the grey pocked balcony:

All Inclusive in bold white paint. And down here
the old public toilets, and one of them dragged –
it would take a strong man to do that – to lie

on its side by the locked gate. Then ascend
the grand ruined steps. Almost break your ankle
entering the mammoth carcass

of the lost hotel, stretched
under the risen sun, utterly scavenged
bone and cement. We must identify. Say it

out loud: The lobby.
The reception desk. The stairs. Black-bellied
crevice beneath a sagging ceiling, dry-blooded

vast entrances and exits of air, bowing forever
numb-hearted, tumbling inward
over hallways upon hallways, war upon war

archways stitched with vine, shifting light needling
the innards – a sun’s sullen attempt to heal.
Step in, out and in over rubble, twisted wire, broken tiles

piles of cans, condoms, dainty pink flowers
and sofa buckled by seasonal rain and heat of memory.
And by the lift shaft, a penis and swastika side by side.

I walk back past The Sheraton – a stone’s throw away.
I send a text to Adam: ‘meet me for breakfast at ten.’
Try to take in the boats. The swimmers. And yes sparrows.


As It Will
For John Wilson

My Integrated Science teacher told me that everything damnable in this world can be reduced or expanded into whatever we say it is and that a curious mind is the only religion worthy of a fight and colour of flags means not much more than a line on a map and fear up close and blended en masse. How interminably slow – how echoingly, longingly, laughing slow – the species can be when memory is lost. That we are all blood versus blood until it roils into a mixture again and the meek come clean and speak pretty words. How the body inside likewise can be its own killing machine or gentle healer if you like, blood in vessel states, mere corpuscle and cells like you would not believe – with so much iron and some of them for hunting down and tackling the invasive. He laughed and said ‘you could call it love’. I didn’t then but I would now. And how the rest of us are all boundaries and tides washing in washed out, the heart an old ticker and weeds are plants by any other name. It is just the way we look that matters. And shouldn’t matter so much. Now I think of him as we begin to be at it again. That when the blood flows down – as it will – into the hollowing scooped moistening earth, permeability, diffusion, osmosis is at work. Or seeds, willing and head bowed to the cause. No more should we be afraid at the end than we were when born. And how like a friend he was when he said all that, my only giant. He knew the abyss was calling me down. He wanted me with nothing to worry about. I know it now, him chalk-fingered, willing the atom to be a universe.

Withheld

I remember nothing of our tour of The Gardens
except for the pond, now a slump in the lawn,
where the trusty gardener’s son was drowned.

All else seems unworthy of excavation
though the guide talked for hours of war,
canals that drew in the city’s drinking water

and imported seeds that still throw up exotica.
It hardly matters what we remember. We paid
an entry fee, more for ice cream and holding hands.

But since then I have been withheld,
a dreamless archipelago. I am found
moored by inlets. Like something tightened.

Like my foot was in a trap. Thoughts unsafe.
Wrapped and coiled against haphazard truths.
I was thinking of other men. Some cast off

the braided rope. Free themselves from stone.
Others give nothing of whatever they will have.
For me, every beautiful place is a reminder

of less beautiful ones in their keep. Here,
a clump of cables jut from the wall and droop
like an injured hand over the ravaged courtyard.

Different elements are recovering at different rates.
The rebuilt houses on the escarpments look down
on fishing boats spearing across another dawn.

And in a quiet zone of former trouble
may we be well enough to say out loud:
How you lean in to me. How this small soul is ours.

I Came Out At Night

I came out at night
to find a rock

where no light shines
to look out

for shooting stars
my body to be filled by waves

a few lines left as bones
a reason to go on

I wanted
so much

I could not at first
make out the new moon

All poems © 2019 David Gilbert

David’s pamphlet ‘Elephants Fragile’ is available from Cinnamon Press and ‘Liberian Pygmy Hippopotamus’ is available from Templar Press

‘ReCollections – a celebration of 70 years of the NHS’ (with visual artist, Beth Hopkins) is available from The Bethlem Gallery, where David is Writer in Residence.

His full collection ‘The Rare Bird Recovery Protocol’ will be published by Cinnamon in 2020.

You can find other examples of his poetry at http://www.futurepatientblog.com where he also writes on mental health and healthcare.

Join The Docs – A patient perspective on integration

The doctors were kind to me. They did the right tests, I assume. They explained things as best they could. They told me what would happen. And they seemed to provide effective treatment.

The phlebotomists, healthcare assistants and nurses were great. I saw moments of love and courage on the ward that will stay with me (amongst patients and carers too, of course).

The ward environment was hard to take – the smells, light and noise in particular. The lack of privacy found me at one stage unwittingly eavesdropping on conversations I had no right (or inclination) to hear – the breaking of awful news, the ‘mobilisation’ of a man in agonising pain, the indignities of humans in naff pyjamas almost making the toilet.

All this is common place. All the surveys in the world show this sort of stuff.

But here is where the light does not shine.

1.

On my first day of admission to hospital, I had a CT scan. It showed something “weird” and they said they would provide ‘conservative management’ (with a small ‘c’ thank god). It was either a ‘diverticular abscess’ or “something more serious”. It was not a great moment in my life. They put me on enough fluids to flood a city and took my temperature down with intravenous antibiotics. I asked them what food I should eat. They said ‘soft’. That was the extent of the dietary advice I had while in hospital. My menu options were chick pea curry, chilli con carne or white fish. I went to Costa and had yoghurts most nights. For all I know, I could have been making my condition worse.

2.

I got used to assuming that I had the gut abscess and seeing my temperature decrease and my energy return a little. On the third morning a different consultant on the ward round hesitated at the computer screen on his wheeled trolley and scanned the scan. From the way he was looking, I assumed it must have been the first time he had seen it. He felt my belly and announced that I might need a ‘biopsy’. I have no idea whether he read my notes. I was back to black. All week (and a bit still) I yo-yo’d between optimism and catastrophising.

3.

Meanwhile, back on the ward: In the next bed, was a young Albanian man who had broken his ankles while jumping off a falling ladder. He spoke no English. During the morning ward handover, while the nurses were otherwise occupied, an anaesthetist strode into the ward. He paused at the lad’s bed and spoke LOUDLY and s-l-o-o-o-w-l-y to him: “You have to have an operation now. Please sign this form”. The lead nurse appeared and pulled him angrily from the ward. He came back later, and with the help of google translate, ‘consented’ (is this now a word?) him to surgery. He seemed in a rush. The clinic was ready, and things had to happen now.

4.

After I got out of the hospital I went for a second scan. This was to see whether the ‘mass’ had reduced and to see if it was an abscess or a tumour (or again try to). The results were due on Friday 9th August. I rang on Tuesday 13th. The secretary said the consultant was on holiday. She apologised and said she would “write an email to the managers” and find another doctor who could do the report. I told her that I needed results before I re-booked a holiday and tackled the insurance company for cover. I rang again last Friday and was told today another doctor would be in touch by the end of this week. I will be away – damn it, I thought, I am going anyway – when the original doc gets back.

Join The Dots

Or join the docs.

The examples above are simple. And not easy to solve I guess. It’s about ‘joining the docs’ – to each other, to nurses, to wards, to interpreters, to dieticians, to medical secretaries. And making sure that the information goes along those dotted lines to make them complete lines of communication. Both ways. And with patients and carers.

My issue is co-ordination. Consistency. Call it ‘integration’ if you want (though the posh wonks and policy big boys have pinched that one for their highfalutin strategic plans that will not solve much IMO). Maybe we could get these simple things right before we try to be too grandiose.

Of course it is not just docs. What about the gaps between health and social care; one ward and another; one hospital and another; commissioner and provider, etc?

One theme that runs throughout my forthcoming book ‘The Patient Revolution’, in terms of the gripes patients have, is co-ordination and consistency.

In the book, we argue that these sorts of issues will only be rectified when patients have true power as equal partners in decision-making. We have skin in the game – nobody else in a healthcare organisation has the real nous and keen focus on the ‘gaps’ in care to do it. We could ‘bang heads together’, or in less confrontational language could help be the glue. After all, we all want to be ‘patient-centred’ don’t we? Shouldn’t that be the vision for any partnership?

Without patients in the room – and, more importantly with a seat at the leadership tables – pathways may be redesigned, but they will remain disjointed, cracked and crooked.

Isn’t it time we all joined together in order to join it all together?

—-

‘The Patient Revolution – how we can heal the healthcare system’ by David Gilbert is published by Jessica Kingsley Publishers. It is available on the 19th September and is available for pre-order now. https://www.amazon.co.uk/Patient-Revolution-Heal-Healthcare-System/dp/1785925385
© 2019 David Gilbert

I Think I Have Been Told Good News – a hospital poetry diary

 

After two weeks of bad gut problems, I was taken into hospital. This is my diary.

Way Off A Blackbird (my first day)

I have become a patient with
a wristband with
a barcode.

They won’t lose me now.
I sit by
the Major Incident Cupboard.

It is a slow Monday in A&E.
Everyone calls me darling.
I am guided by temporary paracetamol

Middle aged men sit down gingerly.
A woman in a wheelchair
blonde roots perilously exposed

leans into her partner’s mid-riff
as he texts, gasping ferociously
as if giving birth
or worse

__

The very observer shakes.
I am an eye on trembling

How can one heart live
with speculation,

wildness of unknowing?

It would seem a pity to die now
of “something nasty”

when I see up close
different coloured poppies

deep azures and marine blues
of my bed’s wraparound curtains

__

On my first night in
two old men

bellicose with opinions fire off at their wives
and when they are gone

lie back exhausted
as if punctured.

He that has any heart left hears
way off a blackbird

__

He disassociates from wanting to improve the world
deletes emails calling on him to sign online petitions.

He tries to remove all suggestion of concern
then sniffs and shifts minutely.

He is now a small long eared marsupial
edging around and pissing a little

in each corner of his new cage

__

“Have your bowels opened?”
A chorus of concern
into the emerging dawn

A small army descend
dutiful reductionists
clothed within their measurements

__

I am low blood pressure
I am an easing temperature
I am a wrist band
bar-coded and signalled
back to the machine

I read the Poetry of Birds
wear non-slip bright red hospital socks
against what might be happening

but cannot eat
what they dub porridge

__

The smart casual docs
one still scarred slightly with acne
the other scratching his arm

pursue the grand master
with the curlicue perfectly symmetrical
moustache

mastered at many a mirror
soft donning the flesh of a patient’s
limp calloused hand

we are ceremoniously belittled

“discharge time?” he pauses,
the pressure on him now
“all depends on pharmacy”

Turns: “Copy and paste the pathology results
into the care plan”

leads the retreat.
The young docs hastily wheeling away
their portable PC machines.

__

On a high screen that no-one dares turn off
somebody – is it Martin Lewis? – is going apeshit
about online advertising scams.

Pigeons resort to a corner of the roof.
The clouds maintain
a semblance of weather.

It isn’t Martin Lewis.

__

Small lies are being told about me
tenderly emails do the rounds
‘investigations’ ‘procedures’
I am between the lines.

Always better to be double-edged
than truth telling

I cannot yet bear sympathy
am not ready to rehearse
how to protect myself
from the fine words of others

__

I have lived the fluid challenge
IV uplifts
all night interruptions
rustle and curtain flap
beeps from the monitoring machine

small dazzling flashlight
‘Are you up?’ when
of course I would be now.

Small crossings between each change of bag
to pee crystalline waters
pure as Evian.

This morning my hands are puffed up
like those of an inflated boy
but still my blood pressure
lies too low

———————————————————-

Now would be 

the time to arrive
car park emptying
the rustling of leaves
rising softly to fill the dome of evening.

The soundtrack of pain
has served this embattled concourse
with demonic duets

between the arcing strings of the sick
and those who can do nothing
but trumpet love.

And now the last bedraggled visitors slip out
no more at ease but
having done what they can do

before listening for trees before
searching for keys.
The tired skies pale.

————————————————————-

I Think I Have Been Told Good News

I think that I have been told good news.
That whatever it is hasn’t spread.
Therefore that whatever it is

may not be what it might have been.
Though nothing can be ruled out (still).
I think I am less thrilled than I should be.

The grass bank next to the ambulance bay
is covered with clover, flying ants,
stumbling bees and trembling daisies.

The ambulance crew wait on a long bench.
There may not be such news as certainty.
I get up again and am covered in ants.

______________________________________________

Goat

The man with the look of a bearded goat
is matter of fact: “Don’t ring after ten o’clock.
They turn off the lights. You can try tomorrow
but I will be walking about a bit
and the phone is almost out of charge. OK
we’ll have to wait and see what the next step is.
Yes, I know. Then let’s take it from there”.

This afternoon, the doctors had proclaimed
from behind the inescapable curtains:
“The biopsy came back but it is not
the sort of news we were hoping for…”
His wife, in mid-crumple, talked of fight
good honest genes and sense of humour.
Not that he looks like a bearded goat.

___________________________________________

The Bay

The word itself forms a critical juncture.
So tonight he departs that hospital bay

sails to Kirribilli Wharf
and spends all morning at The Celsius Café

breakfasting on chia, coconut and papaya,
staring out over lime green waters

and the old green Harbour City Ferry
setting out with its one lazed black-backed gull

slip-streaming, echoing its wide taken turns:
North Sydney, Neutral Bay, Kurraba Point.

Then he steps out on the next or one after that,
breeze on his glistening forehead. Nothing in it.

The swans and yachts bobbing on silver trails
then his boat wheeling back to Kirribilli again

for one more cappuccino or maybe lunch
or perhaps one more trip around this bay.

______________________________________________

Common Birds

My own form is slowly coming through
like a distant plane, vague and intermittent
within cloud – flesh pink and steel,
the full sound of jets revealed
rolling soft as it breaks out into blues.

But still there is need for readjustment.
Until now, I have been duty-bound to hold
myself in weathered defiance
unable to live with what I sensed
happening or what might. Or was meant

by yesterday, when a pigeon tried to land
on a spiked fence. Now, I hear its cousin
cooing, know that both have come to rest
knowing too that it is time to trust
in common birds finding their ground.

_________________________________________

All poems © 2019 David Gilbert

David’s first full length collection ‘The Rare Bird Recovery Protocol’ will be published in 2020 by Cinnamon Press.

You can find other blogs, on healthcare, patient and public engagement, mental health and poetry, at http://www.futurepatientblog.com

The Patient Revolution – why I wrote the book

I was asked to write a few hundred words for the publishers about why I wrote the book. This came in a summery and summary gush….

Because I am so weary of service users, patients, carers and citizens being powerless. Because I live alongside, work with and love the diamond-studded folk that surround me. I see kindness, passion, wisdom and insight in those they call ‘broken’.

And I have seen our efforts and energies wasted time and time again – I have cried in toilets with bitterness, and know many others who have too. I have spent hours on the phone with people who have been ‘served up’ to focus groups, committees and events, in order either to be patronised, marginalised or insulted.

I know dozens of friends who have to take days off because they relapse after turning up to events, seminars and whatever and having to doff the cap and who are repeatedly stripped of their right to be equals.

For me, the people I want to celebrate are those without the privileged entitlement of current leaders. I dislike the way the NHS sustains the status quo on many many levels – often insidious or almost invisible. Through its structures, polices, and the very language and discourse it depends upon.

But these people we celebrate in the book are the type of people who deserve to be leading the system. However, they lack the support, the opportunities, and are seldom afforded the value they deserve.

My writing is a fortunate gift. So, it feels natural to use words to try to light the way.

This book has been brewing ever since I found myself in a locked psych ward alongside damaged inmates. Alongside Lesley-Anne, paralysed from the neck down after jumping off a balcony because her dad died, who got me to play the guitar for her one evening. It was the first time for a long time that I felt I had anything to give.

She had wanted to be a beautician, she could see what was good and bad about the NHS, could tell how the ward could be less scary, which nurses were kind, why the meds trolley needed its squeaky wheels oiled – from the little big things, to the vast swathes of improvement needed. We ignore people like Lesley-Anne at our peril. She died. I will not let her ideas die. She got me back on the road to giving…

Over the last few years, I have witnessed a groundswell of people like us. We need a stronger collective voice, and we need to build opportunities to equalise power.

I have also witnessed staff wanting to reach out, who are tired of tick-box approaches to ‘patient and public engagement’ – we all want new ways to come together, to be round the table, to hold difficult conversations in a safe way. I write the book because we need each other – we need difference (the grit) and partnership (the balm).

I see staff groping for solutions to problems, but unclear how to change things. I know patients can help. I have seen it time and time again.

For all these reasons – personal and professional, creative and logical, individual and collective, for patients, carers and for staff, for the future of the NHS, for a way forward that seeks solutions rather than builds on the volatility, polarisation and negativity that poisons us slowly and is becoming systematic… and as I get older, all I want is what I have always wanted… to help make things better.

I am also at a point where I have sufficient professional confidence and credibility to believe we are reasonably on track with our analyses of what is wrong. I get a feeling we are saying the same thing, across all these chapters. And that our diverse paths are charting similar territories.

Finally, I am proud of how we have written this book, trying to practice what we preach, talking to each other and listening to each other about how the chapters should be written, and what messages we want to articulate. How we do things (kindly) is as much at stake as the purpose. Come to think of it, kindness is the purpose. What else is there?

——————

The Patient Revolution – how we can heal healthcare, published by Jessica Kingsley Publishers is out on September 2019. There will be a launch event in October, which will be live-streamed.

You can order the book now here

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