All posts by davidngilbert

About davidngilbert

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

Happy Birthday Me – Musings of a Two Year Old Patient Director

I know there are a few other things going on in the world right now.

But have a break… This blog is to share learning with everyone out there. I hope it helps your endeavours to do patient-centred work better.

It is not the most entertaining blog I have written, but it tries to be practical and illustrate some of the pieces of the jigsaw.

I hope also that it persuades you that a Patient Director is crucial to bringing patient-centred work to life – and that a pool of patient partners is also the way to go.

Happy Birthday Me

It’s two years almost to the day since I came into post as Patient Director – a bold experiment on the part of Sussex MSK Partnership.

My job is to ensure that what we do is done ‘with’ patients as partners and that it focuses on what matters to people who use our service. We do this by:
• Gathering and using high quality data to improve what we do – this is sometimes called ‘patient experience’ work
• Working with patients and carers as partners – in co-designing improvement and being part of decision-making
• Making sure this work is part of everyday practice – this is about having the right culture, processes and systems that hard-wire patient and public work.

Key Features of the job are:
• Being at executive level means an ability to join up disparate ‘patient-centred’ activities and to give them a bit of oomph.
• Having had life-changing and long term mental health issues means that I can bring a human element (e.g. vulnerability) into the work and model ‘collaborative leadership’ in order to mirror shared decision-making at senior level – practice what I preach and try to get others to do the same is a less NHS-ease way of saying it!
• I do not represent anyone but try to broker conversations between patients and staff that help both sides and improve what we do and how we do it.

Two years and two nervous breakdowns later, I can see how far we have come. We have focused on getting the foundations right rather than indulging in showy engagement activities that may include people but where information gathered often goes nowhere.

Patients’ experiences work

With our patient experience survey over a year old, we now have useful regular data on what people think about our service. As well as doing the usual corporate reports, we are now providing each of our condition-specific teams with quantitative and qualitative data as to how they are doing.

I will be meeting the clinical leads next month to find out what they are doing with the data and find ways to help them improve based on the data – I also want each multi-disciplinary team (MDT) to have two patient partners on it so we do not look at data only through professional eyes. We are also regularly monitoring the survey comments for actionable issues. We have done great work to improve letters we send to patients and information on the website and other small but significant pieces of work.

Our work on patients experiences has led to us focusing one of our CQUIN improvement projects on ‘supporting our administrative staff’ (call handlers and receptionists) to get even better to what they do. We are bolstering our survey with questions on reception areas and receptionists.

We have also conducted discussions with over 50 members of staff about what we could improve and have been doing some observation work in waiting rooms. All this data will be taken forward to our Patient and Carer Forum next month and we will make the improvements necessary alongside patent partners who are on the project team.

Patients as Partners

We have eight patient and carer partners whose role is not to ‘represent’ but to be partners in improvement and governance work. So far, they have been involved in six substantial projects (on our admin systems, pain services redesign, shared decision making, patient-centred outcomes, fibromyalgia services redesign, developing a welcome pack for partners). They have also advised on various ad-hoc issues, such as improvements to letters and patient information. Their impact has been evaluated as positive – leading to changed relationships and practice, for example.

Our first away day a month or so ago led us to develop together a welcome pack that includes role and person specification, confidentiality agreements and information about the service. We will hold another planning day to develop wider recruitment and training needs. We are working with the Patient Director in the East Partnership to develop more of a joint approach and were shortlisted in the KSS Leadership Awards recently.

The next steps will be to
– Get patient partners into more governance roles, such as MDTs
– Make sure we have access to a wider pool of people who want to be involved (but who may not want to be fully fledged partners)
– Link better to community groups and the wonderful local work of the voluntary sector (I am working closely with our self-management lead, Chloe Stewart).

Patient partners are one element of our patient and public engagement work. The best bit is that clinicians and staff are clamouring for more engagement and more involvement of patient partners. We can’t yet keep up with demand!

There is no shortage of willing folk but we need to route people in better – not easy when I don’t have a formal team, but have to rely on informal influence and relationships.

Meanwhile, unsurprisingly, the patient partners want to go off the beaten track and be involved in stuff that suits their passions and skills rather than be slotted into institutional opportunities. One has started blogging, one led development of the welcome pack, one wants to do more on developing relationships with clinicians, etc.

Hard Wiring 

We are developing processes to support staff to work with patient partners, do involvement work and gather patient experience data. This will include sections in the new staff handbook, induction sessions and ongoing training events. We run a ‘what matters’ informal lunchtime learning session where admin staff get together and review what they have learned recently about patients’ experiences and what we can do to improve.

I am planning to share reflections on my mental health experiences to help raise awareness and tackle stigma in the workplace. This is part of wider work on staff and patient story-telling. Two patient partners led a session with me at our recent staff conference, one of those patient partners is part of our ‘culture club’ that focuses on our culture and values

Perhaps most importantly, we value our patient partners by offering them the NHSE recommended honorarium of 150 pounds per day for involvement in improvement or governance work. One of the keys to embedding this reimbursement policy is to have other project managers commit to matching my central pot of money, so they do not come to me ‘cap in hand’ but build engagement resources into early project planning.

So…

The above does not do justice to the fun we’ve had and all the useful stuff we have done. Or the tears. I’m sure I have forgotten something.

After two years of the PD role, we can look back with some pride as to how far we have come and the main highlights seem to me:
– My relationships with staff and patient partners – The main reason I came back twice from illness was the love and care I felt from people in the organisation and the trusted relationships we have built
– I am pleased that there seems to be a real hunger for the work, and that it seems to be based on a mindset that sees patients as ‘helping’ rather than engagement as a tick-box affair. This ‘positioning’ of patient-focused work is crucial.
– I am glad that we focused on the internal hard stuff – wiring the systems, processes and culture – so as to create the fertile soil for engagement and experience work. That was a gamble that has paid off – I have always been suspicious of creating engagement activities that look good but go nowhere.
– We need to further embed the work and there is a long way to go. But that will be another story…

Get in touch if you want to know more.

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

 

© David Gilbert 2017

Three Poems For London

I can’t do much from this far away. I am a born and bred Londoner in Poland on a writing retreat. I can’t do much at all really. But I hope these words help a little.

One note of explanation, a Pantoum is, originally, a Malaysian form that repeats lines in certain formal patterns. The second line of the first stanza becomes the first line of the second. The fourth line of the first stanza becomes the third line of the second stanza. So on. The last line needs to repeat the first. You can shift words within the repeated lines to some extent.

London, June 2017

It is time to be silent.
The bodies are still warm.
Let the dogs bark on the hillside.

We do not need yet
to be moving on,
fuel our minutes with applause
or flag defiance.

That much will come,
that much will come.
It is time for our child.
It is time to be silent.

For Them This

My town raggedy coalescence of parts, organ spells, bloody scenes and bone blabber Them one another gone and in forever Bolt from all just this horse slow whatever animal you are you’re in you’re on Am only not who I was forget in amber upside-down dismembered ravelling-un un un rumble-tumbling nervy tight and sick with chance and teeth jabber Others sing tough of mighty frost in breasts None now mine Must please must witness terrible stop Everybody fast out of skin, everybody swims in drown Not for me this my town my city rivery shuddery Listen this listen Bones as wands for them this this

Do We Tell Them? A Pantoum

Do we tell them to keep in from the kerb,
still ride South on the Piccadilly Line,
or, that events, dear child, come round-around,
that we too stepped through fear when small?

Let’s still ride South on the Piccadilly Line,
sing a pop-gun lullaby.
We too stepped through fear when small.
Preach of a never beaten heart!

Sing a pop-gun lullaby:
‘Bad men in your sleep won’t come by day’
Preach of a never beaten heart!
But does the little that kept us then, keep us now?

Bad men in their sleep do come by day,
I will not take my children into town.
The little that kept us then won’t keep us now.
I am not brave. Keep in from the kerb.

© David Gilbert, 2017

© David Gilbert, 2017

It’s About Time – why we need a ‘slow-health movement’

I have a thousand other things to do. As you do. I shouldn’t be doing this. You probably shouldn’t be reading this either. So many other things. This is a waste of…

After thirty odd years (very odd) in healthcare, I have realised that there is only one thing that we all need to ensure the NHS survives, that will help patients and carers to be true partners in health and healthcare, that could aid collaborative working, the building of a wonderful new world where we all work together to change things.

I have read hundreds of articles, books and learned reports on improvement, change, organisational development, transformation and improvement. Slick words, PowerPoint presentations, infographics… I have absorbed thousands of principles, concepts, frameworks, speeches and pontification. And I have added my penny’s worth to the engagement industry. I have forgotten most of it.

I have run Board seminars, training events, conferences, open spaces and fancy interactive workshops. I have worked with people with mental health problems and other life-changing illness, injury or disabilities, with clinicians and admin staff, with leaders up the top of local, national and international organisations. Yes, this sounds like a boast. Maybe it is, but that’s not the point really.

I’ve learned loads. I know it mostly boils down to relationships and being kind. I know also that I’ve never met a deliberately unkind professional or patient. Everyone is doing their best. I know there are one or two nasty people out there – plagiarists and spoilers. But usually there is a reason behind their nastiness that is more about their own stuff. I know. I’ve spoiled things too.

I know that in the middle of most events I run. In the middle of most books I read. In the centre of people’s consciousness at work – at the heart of being a wonderful professional, in the midst of a conversation about better ways to work together to improve…. There is that moment, when somebody says or writes the words, recognises the key to it all, when there are nods in the room, when there is a nervous and slightly hysterical (but usually suppressed) moment of group cohesion. When somebody says…

But we don’t have time”

And then we skate over it. We carry on making plans, we carry on winging it, we write reports based on insufficient data, speed up rather than slow down, go back to the thousands of emails that have been building up, make those phone calls, sort out the crises. And carry on as we did before.

We try to hang on to the words, the leadership frameworks, the ideas that came from the conferences, the intention to do more work together to improve stuff. But just like returning from holiday, the memory of the blue sky fades. The rush takes over.

We don’t really talk about lack of time to do stuff. There is no time to talk about the lack of time. To deliver. To improve. To change. Creativity depends on the pause. Ask any poet. Without quietness, reflection and time ‘to be’, we are (the NHS is) lost.

Unless improvement methodologists, patient and staff partners, change merchants (like me) recognise this and do something about it – I am not sure what – then all the good will in the world will wither away.

I am sure now, after two years working as a Patient Director in the Sussex MSK Partnership, that this is the ONLY barrier to my work. Busy professionals, clinical and admin staff, patient and carer partners, in our organisation and the CCG and more widely don’t have enough time in their busy days to do more than they are doing, let alone take part in my worthy endeavours to add to their responsibilities – their ‘burdens’ – to be even more patient-centred.

That’s one reason I always say my work is predicated on the principle that ‘patients and carers can help’. But most of them now accept that. They have seen our fab patient partners make a difference during redesign work, in governance groups, etc. When there is a tiny slice of time to come together.

We all want to be better. We all know that, together, we could improve things. Yes, we need more money, more ‘capacity’, more ‘capability’. But mostly we need that thing we are perennially short of. More time would bring the other stuff as a consequence.

No more nervous chuckles of recognition. No more passing over the difficult issue.

I am a big fan of the ‘slow food movement’ and believe there is the rising of a ‘slow health movement’. It’s time to take time seriously. As in our lives, we need to slow down. As in my life, I need to take time to avoid another breakdown.

Can the NHS avoid its own nervous breakdown? Can you? Now, back to what I was supposed to be doing. Oh shit. Ten more emails….

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

© David Gilbert 20117

Let’s Talk About Death – breaking the taboos that surround suicide

Trigger warning: This article is all about death and suicide. It may not be an easy read.

The first time I thought about suicide was when I was eight. Leeds Utd had just lost to Chelsea in the FA Cup Final and the shame of trying to beat up my big brother’s cocky friend and collapsing in tears was too much. I was in the garden afterwards trying to focus on the beautiful cloud of butterflies landing on the purple buddleia.

And then this quiet voice wafted over me, landed and drilled into my forehead: “Why bother?”.

This question has haunted me ever since. And it probably haunts you. But we are not allowed to ask it.

In 1990, in the thick of my six year long 24/7 obsessive anxiety state, I thought much more about dying than living. It was not a cry for help. It was a wanting to be free of pain. The fantasy of dying was an escape valve – I assume a little like self-harm is for some people, though I wouldn’t know.

 

The Dabbler

I dabbled with suicide. I took some over-doses. I remember sitting on a bed washing down half a dozen paracetamol with half a bottle of whisky and calculating how much more would do the job. But what scared me more was the double pain – the stomach pump and possible liver damage plus the shame of coming round in A&E with my mother frowning down. What if I did not succeed? Why bother? Oh, irony.

I also remember wandering up and down Union Street in High Barnet for hours burning with anxiety about living and dying and eventually wondering into the path of a white van that had turned into the side street. But it was only doing a max of 20mph. I think the police that came were chortling at my half-hearted attempt. And I had fucked up the nerves of the poor van driver. I had brought one more sorry soul into my sick circle. What a shit I was. This proved it.

And so then there was the shame of thinking I was not even decisive enough to kill myself properly. I was a dabbler who was fortunate to stay alive in hindsight.

 

The Decisive

Back on the ward, Steve went off and hung himself in his caravan. Larry stole one night to the reservoir and drowned. Decisive. That was the way to do it.

So, there is my first learning about suicide – that there are different types of folk. Even in the mists of pain and suffering, there are different ‘styles’ of suicidal behaviour. Is anyone studying this? Or are we stuck in our simplistic ‘suicide prevention’ models – the ‘let’s talk’ or ‘breaking stigma’ approaches that allow us all to be smug – that raise Twitter awareness – that conflate ‘hits’ on a website with true analytical thinking about what works and what doesn’t?

If we truly understood what’s going on with folk as they near the brink, maybe we could have more subtle approaches, based on involving users in that work. Maybe this sort of work is happening – I’d love to know about it.

 

The vulnerable time

Lesson two about suicide came later. I was ‘recovering’, with the volume, intensity and frequency of ‘intrusive’ thoughts receding. So much so that my psychiatrist wanted to prescribe pills to prevent me from being too high! He thought I might turn psychotic.

When he realised that this was a positive turn of events, he ‘discharged’ me. I spent a few weeks popping back into the day centre to sit amongst my semi-comatose, drugged up, fearful but lovely compatriots. Then I was ‘discharged’ from that limbo-land. I was in the ‘real’ world that I had spent six years away from.

In that vulnerable state, with fewer lifelines, I was ‘getting better’. I was doing more, but feeling still like shit. This gap between behaviour and feelings – where to ‘act as if’ precedes the nervous system re-wiring – is surely the most potentially risky in terms of suicide. This time I had the energy to do it. I was stronger in some ways, and more vulnerable in others.

I went swimming again (I had been a competitive swimmer in my younger less fat with drugs years). But when I realised I wasn’t ‘enjoying’ it, I thought ‘why bother?’. Those buddleia days returned with a vengeance. I projected into the future. If I can do things but they don’t bring me emotional reinforcement, truly why bother? What is the point of life? What nobody told me – what all the myriad psychiatrists (and later psychologists and self-help authors) never did – was that feelings follow behaviours. That the ‘act of will’ (read more about ‘psychosynthesis’ please) can help re-wire sensation, emotion, feeling.

But I didn’t know that, and was both recovering and feeling worse at the same time. I wonder whether anyone is seriously looking at this. In the widening gap between the NHS and seriously under-funded social care, my guess is that suicide figures for this segment of the population may be increasing – anyone know whether this is true. Are the stats there? Anyone looking?

 

Ambivalence

My third lesson about suicide is how it feels when a loved one or friend does the deed. Many people reading this will know of Rosamund Snow’s calculated insulin overdose. She was probably in the Steve and Larry category. And in that respect I almost admire her deliberate act (careful David – taboo thought, you’re not allowed to say that. What the hell. I’m too old to pretend). But I also hate her for what she did, how she deprived us all of her talents. And I also hate myself for not being able to help.

It is this swirl of ambivalent and confusing feelings that is also not allowed of people close to those who decide to die. I hear people telling others who have been bereaved to ‘stay strong’. WTF? How? The need for strong support for the bereaved is my third lesson in coming to terms with suicide. And for those who have tried to kill themselves, to witness someone else doing it leads inevitably to comparison, to guilt of all sorts and the questions about ‘could I do it’? The answer is obvious to me now: Don’t. Just don’t. Trust me: Don’t. But boy the mind can weave some wearying diabolical pathways before you come up with that conclusion.

 

Four Lessons

So here it is, if anyone feels like taking the ‘mental health awareness’ message seriously and putting money where mouths are….

Lesson One: Recognise the different ‘styles’ (I can’t think of a better word, sorry) of those who want to die. Let’s learn to approach support in nuanced ways.

Lesson Two: Acknowledge the danger of the ‘recovery’ period. We need people not to fall into the gaps.

Lesson Three: Don’t tell people who have lost folk to suicide to ‘stay strong’. Go find them and give them space to share their feelings and words. Support them for more than a week or two.

Lesson Four is the one that has been slowly taking root since Dave fucking Webb scored a late Wembley winner that I still think was a foul. And my buddleia experience. That it is OK. Repeat: OK to think about ending it all. That is part of our life experience. We cannot control our thoughts, merely be mindful of them. Stop listening to the shiny shiny positivist ‘let’s be happy’ brigade. It’s OK to think about death, to think about life being futile, to recognise existential doubt.

And when it gets to a bad patch when these thoughts become heavier in volume, frequency and intensity, it’s OK. Repeat it’s OK. This too shall pass – slowly, painfully, slowly, painfully. But they can and they will.

I am glad I did not kill myself. But I think of death a lot. As my lovely uncle Robin once said: ‘what else is there to think about. Cucumber sandwiches’? If we don’t consider death, life is not worthwhile. Think about that. Those who don’t think about it, may well find themselves more prone to the kickback later of emotional suppression.

Good luck. Be gentle, wherever you are and whatever your tricky mind is doing. And: Don’t.

© David Gilbert 2017

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

For My Tired Friends – don’t give up!

My friends seem tired. Those ‘patient leaders’ – people with life changing illness, injury or disability – continue the slog with the rock up the hill. Those ‘patient and public engagement’ champions, ditto – professionals who continue to make the space for others to have difficult conversations and to influence resistant NHS cultures.

My friends, Simon Denegri and Jess Cunnett, two of the kindest, most experienced, wise and passionate ‘PPI’ professionals have both recently blogged their frustrations. The former about being deemed ‘too professional’ to be a ‘patient advocate’ and the latter appealing to a rekindling of a mindset that values people and simple conversations as the basis for PPI. This latter blog seems critical of the ‘engagement industry’ that can be self-serving and sometimes over-complicates things.

Meanwhile, I have heard about an interesting conference taking place about ‘mis-selling of PPI’ and the possible lack of evidence of impact. I laughed at first at the cleverness of the title and then felt undermined. I know it’s a joke. I know it’s well meant. I know we need evidence.

But it felt to me like another ‘why have I bothered’ moment. I imagined people in a room somewhere dissing what I have done for 30 years. Paranoid? Moi?

At the same time, I know of patient leaders who have been triggered back into illness because of the sacrifices they have made for this outsider cause, this unpaid, undervalued, under-invested in, impoverished terrain of work. I have written about the ‘emotional labour’ of being a patient leader elsewhere. Now is not the time though to brood…

Could these pent up frustrations, these sighs, these outbursts, be signifying a deeper shift in the patient movement landscape? And signal a need to double our efforts? While some of us see immense frustrations in breaching the walls of the citadels, maybe something else is happening too. Maybe this is what they call a ‘tipping point’. An over-used phrase – sorry.

Two weeks ago, 11 patient leaders in our Sussex MSK Partnership came together for a planning day to develop our fragile but emerging network – our merry band. Two have gone away (and come in to the office) to write role descriptions and welcome packs and to help plan the next phase of recruitment. We are developing information governance and confidentiality processes. I am writing guidance for staff on how to work with patient partners – two patient partners will be presenting at our staff conference the week after next on what it feels like to be partners. As one of them said, a long time ‘involved patient’: ‘ It feels like we are doing something special and different to what we were doing before’.

Meanwhile, at national level, about thirty amazing patient partners are helping to co-design a national patient and carer partners network – slowly, carefully, gently and trying to practice what we preach about how we work together along the way. Watch this space.

And last week, there was an amazing workshop with patient partners and health professionals at the BMJ-IHI safety and quality conference on ‘patient partnerships’, that I co-facilitated with the fab Carolyn Canfield, Alies Maybee and Jonathon Tomlinson. The freshness of conversations to me indicated a real hunger for an international network of patient partners. And Carolyn, Alies and their fellow pioneers are leading the way with a ‘Patient Advisers Network’ in Canada.

So, perhaps it’s not all doom and gloom. Perhaps the frustration is a sign that we are getting somewhere, that a new line of resistance is being drawn up – by well-meaning academics who demand evidence which may be useful, but could also stifle progress through an over-reductive approach; by intransigent activists who are not yet in partnership mode, by the unconscious blindness of people in the system who fail to see our value and continue putting up the barriers (we can’t pay you; we can’t invest in training; we just want feedback fodder). Maybe we are just more visible. Can we reframe our frustrations and signs of impact?

Maybe we are at the next stage of the struggle. I am tired too, I have to say. If someone were to pay me to write poetry for the rest of my life (fat chance) I would take it. But now is not the time to stop.

Yesterday was the clincher. I was at a leadership meeting of our organisation. We talked about difficult stuff – about the challenges of shifting the system and holding onto the vision of what we want to do with, and for people who we serve. I was bowled over by the passion, wisdom and insight of those around the table – people that I would have labelled a few years as ‘faceless bureaucrats’. To hear them talk about why they were in this game gave me fresh hope. I thought – I am glad I have fought back from two breakdowns this year to do this work. I don’t care what I’m called – a patient leader, a mental health service user, a PPI professional, a manager, an advocate… Whatever.

So, here we are. A NHS crisis. A world gone slightly mad. And the emergence of something fresh. It is spring after all. Vive la patient revolution. Excuse my French (grammar).

Onwards.

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

 

(C) David Gilbert, 2017

 

Let’s (Not) Talk About Depression

A few weeks ago, a friend said: “I love your openness about your mental health problems. But remember some of us are not in your position, some of us do not want to talk. And if I do, I am worried I may lose my job. I think the Let’s Talk campaign is wrong”.

It got me thinking.

Many years ago, I criticised the ‘defeat depression’ campaign, that tried to reduce stigma, owing to its heavy reliance on promotional materials that accentuated drug treatment as first-line therapy. Heavily endorsed and, in some cases sponsored, by big-pharma, it led, in my opinion to biased information materials that emphasised medicalised approaches.

I have more recently gently challenged the ‘zero tolerance of suicide’ campaign. I argued it risked being taken forward in a reductive manner. In a target-driven NHS at a time of competing priorities and confusing decision making, I worried that implementation would mean a loss of its intended holistic focus – concentration on preventing suicide would distract attention from upstream prevention. People would end up ticking boxes related to removing ligature points on wards, for example. I related this to my own experiences on the ward.

Now I have qualms about the ‘Let’s Talk’ campaign on depression.

Let me make myself clear: ‘Let’s Talk’ is a great campaign. It’s got a resonant title, it has no doubt been thought up by wise minds with real involvement of service users. It has been endorsed by celebrities and charities that I respect and admire. And, on the surface, surely it is a good thing – we do need, as a society, (desperately) to talk about the pain and stigma of mental health problems.

However, it is not that simple.

Some people are ‘introverts’. If you have not read Susan Cain’s marvellous book ‘Quiet’, please do. She writes persuasively about how we have shifted as a society, in our work, life and play to one that rewards and values ‘extroversion’ and the ability to be outgoing, demonstrative, collaborative and upbeat. We do not value those who ‘don’t talk’.

Meanwhile, it is intriguing that many of those who have ‘come out’ with mental health problems are those who have least to lose. This is no indictment of their courage. However, it is difficult to think that Stephen Fry, Ruby Wax or Prince Harry are about to lose their status or cred as a result of their bravery. Perhaps the reverse.

I am a Patient Director. My professional status has always been tied to my openness about my mental health problems. Yes, it has been tricky for me to re-negotiate my entry back into working life after having more breakdowns. Yes, it has taken an element of courage to talk about it. But what if I was not established in my career? Would I risk it?

Early on, I lied about my CV to get a job at the Consumer’s Association. I said I had been ‘freelance’ (which is quite funny really… I was seriously ‘freelance’ mentally). Many continue to have to fabricate their history, particularly when climbing a career ladder.

Add to this, that if you have depression, the last thing you want to do is talk. It is indeed ironic that the very trait that is so integral to the state of depression is the one that the ‘sufferer’ needs to stretch themselves to doing – and what if you can’t? What if you are surrounded again by societal messages – in your community, on telly, at the day centre, on the ward, when you go to your GP – that you have to talk. I would be well pissed off. It would make me more depressed.

And remember, for many who have had terrible depression and anxiety (like me), we have been told by mums and dads for years and years to ‘stop thinking so much’. Our inward facing minds, feelings and hearts, our sensitivity and fragility are characteristics that have often been left unsupported by a harsh society. The societal focus on ‘let’s talk, have fun, go to parties’ may have led to our depression in the first place! A campaign to tell us to talk more openly may risk exacerbating our feelings of shame – and shame is a huge issue for us.

And if well-meaning friends and loved ones pick up the ‘let’s talk’ message and interpret that narrowly, then I can well imagine dinner tables where family feuds pick up all over again: “Well, David, the doctors say you have to talk… Come on, son”. “Fuck off, dad”.

I know that is not the ‘intention’ behind the campaign. I know that there is a deep and holistic message underneath. I know that it could help support society to become more accommodating to those of us who have suffered – that a campaign like this can create more space – that it is about safety to talk. But I fear, for some people (not all, I hasten to add) that it can have the reverse effect.

I wonder whether the ‘Let’s Talk’ message will make people and parts of society – in particular those people who are well-meaning, but ignorant of what it means to have mental health problems – feel better about themselves. Perhaps, dare I say it, smug?

I once attended a spiritual community for a week. After one intoxicating workshop, a hundred of us held hands and circled round the room dancing. As the dance circle grew, we surrounded a couple who were having a quiet conversation. We smiled and cajoled, then urged (and in retrospect, bullied) them to join our circle. They were shamed into the ‘Let’s Dance’ campaign.

Let me repeat – I am not against the ‘Let’s Talk’ campaign. But I do have a hunch – borne of my own experiences – that, for some, it may have the reverse effect. It may secure some in their continued silence – through guilt, through shame, through fear.

And, when I meet my friend again, I am going to sit with him in silence and see what happens.

Let’s think.

 
If you liked this blog, or even if you didn’t, you might be interested in other at http://www.futurepatientblog.com – about mental health, patient and public engagement, patient leadership, and a bit of poetry…
© David Gilbert

Resilience – recent poetry

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

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

 

Resilience 1

When still within the story
or the unsteadying silence

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

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

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

The Wren

 

The wren
left the branch

like death – altogether lighter –
delighted to let go,

gravity become so
cumbersome.

Entering the trees,
I cannot see her now

on this unfortunate earth
as the foot stalls,

but somehow know
that the tiny black

blazing eye
follows me.

Pineapple

 

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

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

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

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

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

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

The Plans I Had

 

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

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

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

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

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

 

A Death

 

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

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

Resilience 2

 

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

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

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

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

Avocet

 

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

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

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

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

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

 

Thin

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

 

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

am not where I ought to be
on the scale,

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

wake, unblinking
to explosions of dust.

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

Ingenious doctors are either
worried or insufficiently curious.

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

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

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

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

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

© David Gilbert, 2017

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

Our stories about healthcare sustain the status quo.

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

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

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

It’s the way we tell ‘em…

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

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

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

The locations of darkness lie outside the city walls.

Our ordinary story

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

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

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

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

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

Yes, yes, yes… And

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

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

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

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

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

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

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

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

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

Telling the wrong story?

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

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

What’s your story?

(c) David Gilbert, 2017

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

You Who – an offering on ‘resilience’

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

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

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

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

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

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

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

 

You Who

 

you who

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

know

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

come

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

then
let’s gather at the edge

 

___

(c) David Gilbert 2017

 

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

 

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

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

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

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

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

Grumpy Git

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

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

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

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

The questional hypothesis

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

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

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

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

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

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

I am tired

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

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

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

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

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

 

(c) David Gilbert 2017