The Makers Of Bethlem – Words inspired by Victorian Asylum patients



“Pills are ok, counselling is ok and it will get you back on the streets, but what keeps your mind alive is what you learn here. That’s what it’s about – keeping your spirit alive.” – Lee, Bethlem artist.

I was recently invited to be part of the Bethlem Gallery’s ‘Reading The Site’ initiative – one part of the stunning ‘Reclaiming The Asylum’ series of events.

My task was to spend a day reading historical material from the Museum of the Mind’s archive – letters from the Victorian Asylum’s patients and clinicians’ notes – and write in response.

The Bethlem Gallery

The Bethlem Gallery is situated on the grounds of The Bethlem Royal Hospital. Managed by a small, artist-led team, the gallery provides a professional space for high-quality artwork and fosters a supportive artist-focused environment. The artists are connected to the hospital, as current or former users or carers.

The gallery is an amazing place and is a platform for experimentation, collaboration and skills exchange. It helps develop the careers, experience and expertise of the gallery artists by creating opportunities for professional development. Its successful artist-in-residence projects also work with patients and staff on site to improve people’s experience of the hospital environment. It sits in the old hospital administration building that has been lovingly restored and also houses the Bethlem Museum of the Mind – a fascinating collection that depicts the history of mental health and care as well as the story of the hospital itself. I recommend a visit. Highly!

Have a look at some of the incredible artists’ works at

I spent a magical day at The Gallery and spent a lot of time chatting to the friendly artists who wandered in and out. One of them took me on a walk round the vast site pointing out the wildlife and regaling me with stories. Others brought me cups of tea and chatted about their art work, lives and mental health experiences. Beth, the curator, told me about what they did, and the relationship between what they do and ‘outsider art’ and ‘art therapy’ (you can read about that on their FAQs on the website).

I felt somehow that I had come home; that this was where I belonged – at the crossroads between mental health, real user engagement, art/poetry (and good coffee and cake).

The archive

The letter below was one of many in the archive from patients or family members. The deference displayed towards the clinician, alongside its surreal narrative and (paradoxically) deep insight into ‘truth’ astounded me. See what you make of it.


Dear Sir

I hope you do not think I went to Bethlem before I should. It was on January the 4th that the egg tasted to me so strange, and on the following Monday morning I began to rub my knee just as I have seen my sister do, the one she had injured, without any will of my own. I knew nothing was the matter with mine. Another morning my mother looked to me quite an ugly old woman for a moment. I shut my eyes for a minute, and when I looked again she looked her old self. I knew at the time she had not changed. With the exception of the egg, which puzzled me, my illness quite differed from how I felt five years ago. Then everything was confusion. This time I used to lie down quietly and have pleasurable sensations, and many things that are difficult to understand seemed quite plain to me then.

I hope you will kindly excuse this note. I feel it to be so very defective.

Believe me, dear Sir, yours very gratefully,

Jessie Mary Cowtan


In response to the letter, the artists I met and the walk around the grounds, this is the poem I wrote. The intention is to connect latter day voices with the voices of present day artists. And to explore whose voice counts (in history, narrative, art). One of the artists I met described himself as a ‘maker’. That phrase stuck.

The phrases in italics are taken verbatim from a book – Presumed Curable – that contains clinicians’ notes reporting how patients had spoken. Please note that the poem reads better on a PC than a smart phone, as a ‘smart’ phone is stupid when it comes to line breaks.


The Makers of Bethlem
For Albert, Keith, Matthew and all the makers

If I may Dear Sir

For done wrong,
when the daemons flit
and the quiet unplugs
the underbelly’s rush
I have been too long
at the margins.

From my room – the escape, the bolt-hole, the refuge, the asylum
within a second skin, a filter, a lens, a medium
through which I see you – more clearly than you see fit
or can diagnose – in the seeing of me.

Come closer. These red stripes, diagonally across the paper –
these lines – are the slashes across the past,
my wrists, my neck, my arms.
Feel you safer now to near or care?

Once it was all about morality and sin
I signed my name ‘Petrolium’
then crouched and offered up a litany:
I am the wrong man
My left leg at all times troubles me
The peculiar shock from my head
I have suffered such strong constipation
My food is hard and changes before I swallow
I am upset by the noise of spoons
Or sight of the immoral stethoscope
I am not my mother’s child
I am a great lump of pudding
I speak in rhyme and make of all around me, kings

 I wore strong clothes
And was immersed for days
Gloved now,
I was going to have to finger out my eyeball
I don’t know why I took the parrot out of its cage
And wrung its neck
But tell me why
Any of this is more inexplicable
Than the cause of my being here
When I lie down, there are pleasurable sensations
The smell of egg is strange
I see plain.

Then and now done wrong,
the causes adjust.
We are no more or less lonely
than before, again working with skin and light.

Still, everything is wrong and I am not worth anything.
Life is different from what it used to be. I am ruined
in a thousand translations of when and where
or DSM.

If we are to be found dead
in ye olde brooke or modern reservoir – water is water.
The crow is the modern phoenix – let us pray
to whatever turns us in or on or
makes us out.

Some of us have learned despite,
bring back brick to life.
With leave to walk the springy grass
around the acres by the forensic unit
have begun
picking up bits of wood and taking them back to the room
to paint or work on, then leaving them again in the hedgerows, to see
what happens when they are worn
by the unpredictable elements.

I walk the grounds from six a.m
bring apples to my friends
superior to those you’ll buy in supermarkets.

Did you know that ivy strangles the tree
but when you boil the inch long leaf stem
for as many hours as it takes
for SSRIs to breach the capillaries
the components in the broth
help you breathe more easily?

There are deer and badgers.
The green parakeets continually break
from the woodlands near the bus stop
where the couples quarrel.

Have you listened to that dead tree
bolted and split by the storm’s brash light
harbouring original insect life.
Feel its jutting splintered trunk smoothed
by the wind twisting
around the old administration building.

Can you see it, a totem? Faces gnarled,
gargoyles from the ages
staring from its circumference
out to the fields
or would you have me real?

I am artist. I am maker. I man woman engineer.
I call myself – I call – what I will.

We are the makers,
We are the makers
the muckers, the mucked,
the mocked, the poxed,
the painters, the penned,
the maskers, the markers,
the makers of Bethlem.

I have built a cardboard fire place in my new room,
real with flame.
Come find. Come talk.
Or is it cure you need?
Must we still kneel? Comply?

I work with everything required.
Will you?
And find that tired time has slowed.
Portraits in oils and framed crests
initialled in the old Boardroom
don’t safe speak to me.
I view all things plain.

Your words once cheered,
now I fear I am not so much imposing on your time
as you mine. We
have other paths to run
between and across, beneath and
above, beyond asylum.



If you liked this post, do visit for more musings on healthcare, patient and public engagement, mental health and poetry

If you want to read more poetry about my own mental health experiences, you can do so here and here

(c) David Gilbert and Bethlem Gallery, 2016

If I Still Scream – Three Reasons Why Trumpism Hurts

Many more qualified politicos can comment on the Trump debacle. I was trying to disentangle the feelings and thoughts I had. A US friend – while tearful – said my thoughts made sense and helped a tiny bit.

So, this is a personal take on why it (and Brexit, etc) feel so bad in my heart and head. And why it may feel particularly bad for someone with mental health problems. And what I need to do about my own feelings and thoughts. Maybe this might help someone else. That’s the intention.

So, this is not clever, not academic, but it is deeply felt. And it’s short.

Three things that hurt

Firstly, the bewilderment, bafflement, incredulity and dismay about what has happened – a welter of questions that mask a deep disorientation… ‘how can they/he do this?’. WTF? The narrative does not make sense, the feeling that I (we) have been duped, and that the process by which this came about is not understandable (though rationally pundits can explain it away). I don’t get it. I need to rip up my story of how the world works or was supposed to have done. My middle-class comfort has been blown. Why have I been so stupid. Tears for the past…

Secondly, fear for the future. The crisis of uncertainty, the unpredictability – ‘what next’? I am thinking about how to explain Trumpian madcap dangers to my twelve year old and deal with my/our fear for our childrens’ futures. I am / we are unsafe, exposed to the winds of change and discomfort – what was real for others (less fortunate) is coming closer, the winds of change. Tears for the future…

Thirdly, as a result of bafflement about the past and fear of the future, comes a sense of powerlessness. There seems a futility of ‘agency’. How am I, or we able to harness my own, let alone the collective, good in the face of the abandonment of ‘reason’, the loss of fact, evidence and logic plus kindness, humility and tolerance as valid currencies. What can I/we actually do? Because, so the depressive logic goes, we can’t change anything. What’s the point? Tears for me…

Echoes of mental health problems

And then I thought how much of a parallel this sequential sort of reasoning is to my own anxieties and depression – and perhaps other people’s mental health….

During my troubles, I couldn’t understand what had happened to me, I didn’t understand why this had happened to me; then the overwhelming sense of fear and uncertainty about what will happen to me and hence a sense of lack of control over myself and my mad head, or my ability to navigate the world.

And I am triggered because of the resonance between my own recent mental health problems and this ‘collective breakdown’. I am we. As a Jew, it is hard also not to see the current state of the world as deeply resonant of the 1930s rise of fascism.

What can I do? 

I think that if we succumb to despair, in a strange way we are reverting to primal feelings and a reactive habit that is as deep and strangely cogent as the anger and rage that fuelled Trump. We sink to ‘their’ level. So, there is a political and moral duty to lift ourselves and be better and bigger than that.

And, if we can (and this is NOT easy), we need to avoid too much self-pity – we have a duty to still help others, partly because if we indulge in that self-pity and sense of powerlessness, ‘they’ win twice (I know I know I should not be too much ‘us and them’, but that is beyond my spiritual capabilities just at the moment…. Not all of us can be Ghandi).

Moreover, I still have to believe in the power of kindness. I am not sure ‘all you need is love’. And I am still unsure that love is the most powerful force in the universe (though I want to believe it). But, when I am lying in bed awake at 3am, there does not seem much else for me to anchor myself to.

And ‘nobody said it was easy’ (Coldplay). Recent events have ruptured some of our (my) smug assurances about what life should be like. Maybe disruption of our cosy narratives is not such a bad thing. Maybe it will motivate folk to get out there…

And this, by Elie Wiesel, the holocaust survivor, is the clincher for me. We may be living in an era of rising fascism, who knows…. Much is still speculation. Sometimes we tell ourselves stories, even bad ones, to try and make sense of stuff. But this, by someone like Wiesel has always had tremendous resonance:

One of the Just Men came to Sodom, determined to save its inhabitants from sin and punishment. Night and day he walked the streets and markets protesting against greed and theft, falsehood and indifference. In the beginning, people listened and smiled ironically. Then they stopped listening; he no longer even amused them. The killers went on killing, the wise kept silent, as if there was no just man in their midst.

One day a child, moved by compassion for the unfortunate teacher, approached him with these words: ‘poor stranger, you shout, you scream, don’t you see that it is hopeless?’

‘Yes, I see,’ answered the Just Man.

‘Then why do you go on?’

‘I’ll tell you why. In the beginning, I thought I could change man. Today, I know I cannot. If I still shout today, if I still scream, it is to prevent man from ultimately changing me’

(From ‘One Generation After’ Elie Wiesel)

Get up

Whatever you do, give yourself some time to weep, take care of yourself, and others. Then, get the fuck back up. Get out there and help change things by being more kind, more generous, more loving… whether it ultimately changes the world, who knows. But it’s the only way to preserve yourself. And who knows, maybe all of us in the future.

There may not be light at the end of the tunnel. Or maybe there is. But we can carry one.

Let’s Talk About Power – Here Come The Patientistas

Let’s Talk About Power

Is the fact that we don’t know what to call ourselves – patients, users, clients, etc – or whether we are patient leaders, partners or advisers, etc symbolic of a deeper problem? Divide and rule.

As long as there is no collective identity for those who have life-changing illness, injury or disability, those who struggle with their health and well-being, or those who have long term conditions, then we allow ourselves to be labelled by others and are a fragmented bunch. This may also be why we sometimes ‘compete’ for space, get involved in internecine squabbles over who should be sitting at the (limited places at the) table. Divide and rule.

Maybe it’s not just the name. Maybe we are too coy about talking about power. Maybe we are too nice. We will happily argue about semantics and get upset if people don’t call us the right thing (understandably – words come with baggage), but we still will prefer to talk about words like ‘empowerment’ ‘activation’ ‘partnership’ ‘collaboration’ ‘co-production’ etc and avoid using the P word. Why?

Do we – as ‘patients’ still seek permission before we do stuff? Wait to be ‘let in’? That’s because there aren’t enough of us doing the ‘letting in’. Because there aren’t enough patients (place any word you like in there) in power to do the letting in, opening the doors, the flood gates…

Meanwhile, the well-meaning, policy wonk cartel made up of the Kings Funds, Health Foundations, Nuffields, etc continue their insightful diagnostic analyses into what’s up with health systems, but fail to get the real solution – that patients as partners in co-decision making are the solution, and the route by which to find the solution. That, without ceding power (why would professionals want to do that?) then the NHS will continue to fail. But then again, those organisations, like the rest in the NHS, have few patients at senior level, none in their exec teams and few on their Boards. Same is true of most ‘patient’ organisations, with a few shining exceptions.

Those in power do not want to talk about power. After all, if you are in power, you may have a blind spot about how powerful you are, and/or won’t want to upset yourself by thinking you should share it. Maybe it’s a bit scary. Who of us wants to let go? It’s a common feature in human history – those with privilege will pretend that it is not about privilege. Those in power will disguise the rules of the game and, if pressed, will find marginal things to focus our plebeian attention on, rather than redesigning the rules.




Yes, the system is tinkering with patient-centred solutions at individual level – the rhetoric of shared decision, self-management, access to patient held records, etc. But without power at a macro-level, there is no change. Time and time again over thirty years in this exciting but wearying world, I have seen ‘innovative’ projects, ostensibly patient-centred crumble under the weight of professional capture. Perhaps it’s time to match our stress on individual partnerships and better relationships, with a bit of muscle and robust thinking about power and institutional structures.

I was listening to Woman’s Hour, and hearing inspirational testimony (better than that derisory word ‘anecdote’) from feminists who have changed the world. One said ‘it’s about changing the terms of the debate’, and went on to argue that you cannot do that without having women in power and leading organisations. Precisely.

Meanwhile, healthcare policy is a patient-free zone. No real power in No power in the Lansley Reforms. No power in STPs. No power in the Junior Doc debate. No power. (See ‘The Hedgehog – what happens when policy making is driven by fear‘) And poor policy making is at the root of much of our problems.

We can continue to muck about at the edges. We can continue to get ‘involved’ and argue the toss about whether we get paid more than bus fares to turn up at meetings. We can continue to get involved in projects as reps or story tellers. We can continue filling in questionnaires and coming to focus groups. We can continue contributing ‘case studies’ and ‘tools’ for well-meaning professionally-designed resource materials. But much of this is a waste of time, if policy and practice isn’t changed at root and branch level. And how will this happen? With power.


The Outsiders

It is beginning. It is beginning outside the ‘system’. Entrepreneurial outsiders like Michael Seres (@mjseres), Denise Stephens (@enabledby) and the like are shifting the terms of the debate in terms of innovation – inventing stuff alongside patients and service users that really change lives. Folk who are cleverer than me and au fait with the online world are taking apps and wearables and putting control of data and organisations in the hands of users. And of course user-led disability organisations have been arguing for decades around power and who controls the agenda.

Now we need ‘inreach’ – we need to be like an octopus and reach into the systems and the organisational structures and change them. Ironically, the citadels of power are desperate to change. Healthcare professionals are beginning to reach out to work with us – can see that we can reframe problems, bring different solutions, change dynamics, etc. (See ‘The seven things that patients bring‘). But at the same time, many higher up in the hierarchies are shit scared of giving up power and money.

Power doesn’t necessarily mean bossing people about. It doesn’t have to mean wealding a whip. But it does mean, as one canny service user said last week, ‘putting my nose into every part of the business’. It does mean being present when people are deciding on where to put hospitals, where to divert money to, where and how staff will be utilised, how to plan for the next five years. It does mean asking questions at the heart of healthcare and taking part in the art of decision making.

Yes we need to model the sorts of behaviours we expect from others. But, real leadership can only come with a shift in power and influence at the top of health care organisations – as well as the middle and everywhere else.

You have to equalise power distribution, as well as model that equality once you get there. You have to re-balance the scale by adding a little weight to one side.

We can’t shift to prevention agendas, peer-support, better involvement of the voluntary sector (code words like ‘upstream’ and ‘devolving’ abound) without shifting the money. Shifting money might (or might not?) mean fewer healthcare professionals and (definitely) more people who know about patients’ and lives in their communities. Sorry, it’s not always a zero sum game.

And, yes there will be losers. Let’s get real and have those difficult conversations in the open. The STPs would have been a good place to start, but it’s too late for real engagement there. They are a disaster waiting to happen because all conversations so far have been in secret.


More than desirable

One or two Patient Directors in one or two organisations aren’t enough. Nor is a commitment to co-production. We could start by making it ‘desirable’ or even ‘essential’ on staff person specifications that applicants should have ‘experience of being affected by life changing illness, injury or disability (IID)’. And interviews should ask how they plan to bring that expertise and insight into their role. At least half of all jobs in NHS organisations should go to people who primarily identify themselves as people with a LTC or IID.

We need patient-led journals, patient-led think tanks, patient-led conferences, seminars and events, local and national patient and carer networks and access to, and real investment in patient leadership training. And if the system won’t fund us to do it, or we don’t get permission, we should find ways to do it ourselves.

Yes, it’s hard. Yes, we want our work to be ‘embedded’, but often ‘embedded’ comes to mean plagiarism, co-option and neutering. Isn’t it time to take control of our own agenda, as the feminists have?

We don’t need permission. The heterogenous and fragmented individualism that has come to be the hallmark of a divided movement, could be our strength. We are everywhere, working in diverse ways. But we have to step up and talk properly about power.

Here come patients. Los patientistas. Patient-citizens? PaZiens? Who cares. Whatever the words we use, let’s make sure we start talking about power. If not us, who will save the NHS?

©David Gilbert 2016

Once I came this way – Blog and Poems on the old Asylums

This was a blog I wrote, and first appeared, on the Wellcome Collection’s blog site about its ‘Bedlam: Beyond The Asylum’ exhibition.

Wellcome Collection Blog

‘Bedlam: the asylum and beyond’ interrogates the original ideal that the asylum represented – a place of refuge, sanctuary and care – and asks whether and how it could be reclaimed. This blog series intends to showcase as many different voices and perspectives from people with lived experience of mental ill health and explore their ideas of personal asylum.

This post is from David Gilbert, a poet we invited to write for the series after he posted his poems on Twitter in response to the exhibition.

Museums are about the past. Objects are behind glass. It is safe to walk about between objects of curiosity and then go for a cup of tea and scones, and talk to friends: “That was nice. Interesting. I liked the way they… put it together”.

However, I wasn’t sure about visiting the ‘Bedlam: the asylum and beyond’ exhibition.

A few weeks beforehand, I’d had…

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The Difficult Art of Returning to Work after Mental Health Problems

I said to my soul, be still and wait without hope
for hope would be hope for the wrong thing; wait without love
for love would be love of the wrong thing; there is yet faith
but the faith and the love are all in the waiting.
Wait without thought, for you are not ready for thought:
So the darkness shall be the light, and the stillness the dancing.
(T.S. Eliot)


The Wait

After a scary bout of mental illness, I was recovering. Thoughts turned to work, my supportive GP felt I could make a ‘phased return’ and my employers arranged for an occupational health assessment. Inevitably, as things took longer than I expected (typical NHS processes!), I started a whole new set of speculative anxieties in my head – after all, what’s a head like mine to do when faced with nothing to fill itself with? 🙂

They call it ‘managing uncertainty’. I’ve always been rubbish at that. I usually create a drama, turn it into a crisis, cathart, get through it, get over it. Repeat. Now I was being asked to wait. Simply wait.

Monsters filled my head – my post would be downgraded. I wasn’t up to being a Director. The role of Patient Director was doomed from the start. I was a failure. The problems – a ton of them, that had made me ill in the first place would not be solved. My employers were well-meaning and could send me flowers, but the reality would be different. They probably didn’t like me. Such BS we fill ourselves with.

Knowing much was BS, I tried other tactics – planned voraciously. Made an action plan. I leaned on friends for support and advice (probably too many of them). I also went for long walks, picking up litter (my new localist activism) and wrote a ton of poetry.

What did I learn? That most of the worries were without foundation (plus ca change), and that some of the tactics helped (the walks, the plans, the poetry) and some didn’t. The worries never really went away. I wasn’t ‘distracted’ or cured of my obsessive thoughts, but on the whole, I allowed them to just be. And that was a step forward – I didn’t cut and run. I didn’t allow the future or my thoughts about the future to bully me. I allowed myself to have mixed feelings without being overly swayed by the negative ones. I could be mixed in my head and still live and do things.

I did not resign. In the old days I might have done. I am proud that I stuck with it. And I am grateful to all those who helped me to do the uncertain, unexciting, boring and non-dramatic thing. In particular, my amazing wife, Susan.  I had broken a pattern – that anxiety about uncertainty does not have to convert to drama or crisis.

The meeting

Last week I stepped back in. I finally had a meeting with my employers, in the Sussex MSK Partnership. On the drive from London to Brighton, I was a weird mixture of anxiety and calmness – I was happy that at last I could make the move back, but of course nervous about the process. That was natural.

Again, I managed to contain my anxiety. But halfway around the M25 I was really tempted to just go home. But I breathed and tried to allow the overwhelming feeling to pass. It didn’t go away, but retreated a bit. Maybe one can learn to be in the present, at the same time as the circling thoughts and difficult sensations. Maybe that’s the point.

I turned on my Spotify playlist: Sparks ‘This Town ain’t big enough for the both of us’ and laughed. Not right. Next up was ‘The Rising’ by The Boss. Better, I thought, and hit the re-play button.

At the meeting, they said we could reflect on the role, that the projects I wanted to drop I could drop (and were being covered by others) and that other issues would be dealt with as I had felt they needed to be. They welcomed me back warmly, we were specific in our plans about when I would be working where in the first few weeks. They were serious about accepting my concerns….. and I could not have wished for more.

Breaking Stigma

What has the Sussex MSK Partnership done so far that I feel is different and worthy?

Firstly, here is an organisation that has not yet got it right with the Patient Director role. It’s the first role of its kind. How could it be perfect from the start? They know and I know that I was doing too much, had not had enough support and that this needs rectifying. We should have sorted it out earlier. But better late than never (though I wish I had not had to suffer for it!). I reckon many NHS organisations would not even get that far in their acknowledgement of circumstances and consequences.

Secondly, I feel fine about telling people I have suffered from anxiety and depression as a result of work pressures – I don’t feel the stigma. How good is that? I know it is easier for me, because my previous problems were out in the open. But I have worried that this latest bout would make them rethink, that doubts might be expressed about my ability to hold down the job. None of this so far. Fingers crossed.

Thirdly, they have also listened to my doubts about the portfolio, and to my plans for rethinking how to do it (based on much more of a mentoring relationship with key folk, building capacity over directing activity-related programmes). They are continuing their commitment to risky innovation. It might not work out, but then again, it just might. This experiment may be worthwhile. There is a shed load of learning for the NHS whether we ‘win’ or ‘lose’ – others should take note.

They are not perfect. But then nor am I. Maybe it’ll work out after all. Watch this space.


The final word though, self-indulgently, is about me. I did a brave thing. I think driving around the M25 and not turning back, has allowed me to face a few demons that desired me to flee. I broke some habits. I stepped back into the place that had broken me. Temporarily, not forever. I have learned that I can go back, if I so choose.

I was calm, strong(ish) and constructive in the meeting. I was proud of the dignity I think I displayed – this is not a trait I usually associate with myself.

For all those who are about to do a courageous thing, I wish you calmness, strength and dignity.


(c) David Gilbert 2016

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Gazza’s ‘moment of madness’ … And mine

(Please be warned. This blog may be triggering)


May 18th 1991

Not much was going on. Taurus. Emerald the birthstone.

I was in the psychiatric unit smoking room, half heartedly watching Gazza’s final. Paul Gascoigne’s star was rising as a new era for English football dawned. Tottenham were playing Nottingham Forest in the first FA Cup final since the World Cup of Italia ’90, a tournament that had captured the country’s imagination. Gascoigne’s tears had captured people’s hearts.

It was raining, and the nurses were sipping cups of tea behind the long observation window.

(Northern Somalia was declaring its independence, but was not to be recognised by the international community).

The dark days of Heysel and Hillsborough were behind us, and the new Premier League was just around the corner. And for the first time, baggy shorts were back on display, worn by the Spurs team.

Nothing happening today. No activities, few staff, no visitors. More rain. Mayhem down the corridor. I couldn’t be bothered to find out what was going on. I tried to focus on the game. But the obsessive thoughts would not relinquish their hold. The drugs don’t work. Nothing works. Why go on?

(The USSR was launching two cosmonauts to MIR space station. Helen Sharman, the first Briton in space was on board).

I walked out of the unit, through the car park, past the hospital canteen, up through the hospital grounds, past the tall water tower, up to the shops in Barnet High Street. And I walked up and down aimlessly trying to fight and ignore, trying to fight then ignore the mental anguish. Nothing worked. Why go on? This was going to be my life forever, right?

(France was performing a nuclear test on Murora Island).

While I was walking up and down…

In a wild, fateful foul on Gary Charles, Gazza’s came off worse in a collision that left him with a ruptured cruciate ligament in his right knee and facing a year out of the game. Gazza was carried off moments after Stuart Pearce had fired Forest ahead from the resulting free-kick. He burst into tears when the Spurs team doctor diagnosed the injury in the dressing room, and again when he lay in a hospital bed watching on television as his victorious team-mates went up to collect the trophy.

(High temperatures were being recorded at a nuclear power plant in North Korea)

Why do we do what we do? I walked and walked, and turned into Union Street. I walked up and down for minutes? Hours?

‘That was my dream,’ said Gascoigne. ‘I still get a lump in my throat when I talk about it now. I wasn’t bothered about lifting the trophy. As a footballer all you want to do is walk up those steps. You ask a lot of players, the FA Cup is bigger than a World Cup. I said, “Oh my God, turn the TV off”.’ The move to Italy still went through – albeit 12 months later and for £3million less than the original £8.5m transfer fee – but Gascoigne was never the same.

The white van turned into the road. I was in so much pain, I did not really care. I stepped out.

‘I tried to get a good challenge on him to let him know he was in a game. I just mistimed it. It was daft and I’m gutted about that. I’m just probably one of those players who couldn’t tackle. When I see the challenge I cringe myself. It’s the biggest regret of my career.’

I still regret what I did. But I am grateful to be alive. Please don’t do what I did. Or what Gazza did.

The Hedgehog – What happens when policy making is driven by fear

“The health service has been prone to operating a ‘factory’ model of care and repair, with limited engagement with the wider community, a short sighted approach to partnerships… We have not fully harnessed the renewable energy represented by patients and communities…” The Five Year Forward View.


You’re a hedgehog. Sometimes when you are scared, you huddle into a ball. If you are afraid of having difficult conversations, anxious about the future, you speculate… The fantasies in your head about what will happen are largely built on assumptions about how things have gone in the past. And you assume the worst.

NHS leaders are hedgehogs. Ordered by chief hedgehog, Simon Stevens and NHS England to ‘get a grip’ on resources and how local healthcare will be delivered in hard times, Simon has ordered all his little hedgehogs to huddle together to draft Secret Transformation Plans (STPs). Patients, carers, communities, citizens have been excluded.

OK, let’s drop the metaphors

Yesterday, in a surreal moment for the NHS, NHS England published ‘guidance’ about how they ‘expect’ (is that a requirement? Is that a ‘it would be nice if?’) local organisations to engage ‘meaningfully’ in conversations with patient, carers, communities and citizens about STPs.

This is a long long time since the beginning of Secret Transformation Plan discussions about how your money will be spent (and perhaps which hospitals may close and what services may be rationed, sorry, ‘re-prioritised’).

I know how this works. Someone, probably a low paid patient and public involvement team alongside the deputy communications manager will be asked to stay late to design some sort of strategy for ‘consulting’ with the public. They will be asked to get legal advice on what counts as ‘statutory consultation’.

The enthusiasts will put in phrases about how they will hold ‘deliberative’ discussions with ‘key stakeholders’ about the options – they will go to and fro to the Chief Executive office to ask how the hell they can do this with a straight face, when their bosses have been holed up behind closed doors for the last year with other organisations (whose governance structures are foreign to the PPI lead).

They will be told to phone the other poor PPI leads and Comms teams across the patch and will come up with some sort of patchwork quilt of STP roadshows, events, surveys and focus groups (though I am not sure where all the money for this is going to come from – but perhaps there’s a bit left over from the Comms budget that can be ‘re-allocated’ from the planned community resource fund and maybe KPMG can help?)

And this will be a charade. The real discussions and deliberations have been going on between people of power for months and months. Many of the real decisions will already have been made. But we don’t know that for certain actually – because, well… Nobody has told us.

This is what happens when policy making is driven by fear.

My hunch is this:

Top managers have been told that this stuff is very contentious. That, while patients and communities are (“of course”) important, that this is too difficult to talk about openly. If it “gets out” that this or that hospital is under threat, God forbid.

Past experience has shown them that the usual methods of engagement (focus groups or representative structures) have not worked when it comes to deciding on priorities – that the mud slingers and ‘trouble makers’ or the insultingly labelled ‘usual suspects’ will rock up to public events and make trouble (alongside their mates in the media and pet local councillors).

Based on false assumptions about how engagement could work, they think it better to hide any potential bad news. Distrusting their local populations and patients – seeing them as children unable to hold insights into resources issues and how their money might be spent or without ideas on novel ways to organise things, they have locked themselves into dark rooms.

A guardian article recently said that STP Board members have been ‘prevented’ from discussing plans with the public and/or in public. There has been little detail of how patients and communities have been engaged. In another article, defending a STP’s engagement, a local spokesman said they had ‘also had discussions with’ the local HealthWatch. What does that really mean? Nobody will tell us. Great if it’s happening properly. Hats off to the hard working, underpaid and undervalued HW teams and members (volunteers remember). But it is NOT happening across the country.

What I want to know and have been unable to find out is: who is at the table? Are patients, carers, communities and citizens at the decision-making table – are they part of deciding which options go forward? Have they been in positions of influence. Where were the plans to engage from the beginning – Why wasn’t Simon Stevens brave enough to push for the promises of the Five Year Forward View re community engagement?

I think he was scared. And because engagement tools are not fit for purpose. And because those approaches have not led to people seeing the benefits. That has suited those in power as they have buffered change. But now we really do need partnerships. And patients could help. If we had been five years further on, there would have been confidence in new ways of doing things and new ways of holding difficult conversations about resource decisions.

I am sure there are some brave local CCGs, for example, that have bucked the trend, that will fight all the way for decent involvement. Good on them! I hear of some decent work going on to involve patients in designing pathways for particular conditions. But the tragedy is that these are the exceptions, rather than the norm. And I fear that the results of these condition specific initiatives will be ‘fed into’ STPs. But that without patients as partners in positions of influence, the implementation of these findings will dilute further up the food chain.

We’ve been here before. Where were patients and communities in the car crash Lansley Reforms? Or in Kelsey’s nightmare Or in the Junior Doc dispute? And now STPs? Nowhere.

Even National Voices has criticised the state of play: “Public engagement in the STP process got off to a poor start. Too much planning has been behind closed doors. Now local planners need to make up lost ground, mend damaged trust and engage with local people, communities and voluntary organisations”

This is a remarkable statement. Remember that this comes from the organisation headed by Jeremy Taylor. Jeremy is also Chair of the People and Communities Board for the NHS England Vanguard work. There is no-one better placed, in my opinion, to have  an informed view of patient and public engagement in national policy making. And I know how hard NV works to be constructive and supportive. So, this statement I  see as a real warning of problems ahead.

I can be a little more forthright!

We have come a long way in seeing the value of patients as partners in self-management and shared decision making; also in local quality improvement work (witness the rise of co-production approaches and experience based co-design) and community development; in patient leadership ideas and, to some extent local governance (witness me being appointed as a Patient Director).

However, when it comes to patients as partners in policy making….? Zilch.

NHS England will claim that guidance on involvement now stresses the importance of STP leaders engaging with patients and communities. But it is too little, too late. The die has been cast, the horse has bolted, the footprints printed… (insert favourite metaphor here). And what’s worse, is that poor dedicated involvement and comms leads – some of them my good friends – will take the rap. I’m even wondering whether I may get a call to help a local STP out. God help me.

There is a disaster waiting to happen. Patients and communities are not stupid. They will see how they have been locked out of policy making. And I can almost hear the sound of placards being built. And imagine the phone calls to lawyers about judicial reviews. This is what happens when policy is driven by fear, driven also by a history of poor engagement that has further fueled erroneous assumptions.

One final thought. Doctors used to fear breaking bad news. Medicine, shrouded in secrecy, fixed on certainty, thought that trust was engendered by being reassuring, and dealing in 100% black and white medicine. It’s safe or it’s not.

Medicine and healthcare professionals have changed. I trusted my GP this morning about my drugs because he was honest and shared the benefits and risks of treatment. We had a difficult conversation and treated each other like adults. Simon needs to learn and put his 5YFV rhetoric into practice.

Because you know what happens to hedgehogs when they curl up in the middle of the road…

© David Gilbert 2016

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Dear Friend – a letter to Patient Leaders

Dear Friend

You care. That is your blessing and your curse.

You have fallen, been scarred, changed at the core by illness. Your identity has been stripped and you are a refugee from the old country of your body and mind.

Not only do you survive, not only do you take small and bloody steps towards well-being, you have chosen to try to change the world. Or at least a small part of it called healthcare. I do not know why. Perhaps it is because you believe that others should not have to go through what you did. Or perhaps it’s out of gratitude and/or the desire to gift your learning.

As a ‘patient’ (that word that we will continue to contest), you know that you are not merely an expert in your own condition. You have witnessed your own suffering and those of others. You have (humility allowing) an angular insight into being human & a glimpse of shared humanity – your ego may have broken a little and you are kinder. Let’s hope so.

If you are allowed into the corridors of power, you will certainly see through the games that people – powerful people – play. You will know that the words they use are a cloak to blind you with. You will threaten them – the experts – because of who you are, how you behave and through your passionate curiosity.

Some will welcome you and you will make good friends and allies. They too see the possibilities of a new way of doing things – a new way to share power – that everybody could win if you work together. But these people are still few.

You can both see that being vulnerable, fearful, uncertain is a path to kindness and compassion – that being ill is an insight into being human. You can tell if people are kind or not – you have a radar for authenticity at the decision-making table. No wonder you are a threat.

You can tell them, if they are able to listen, about what it is like to lose your identity and who you thought you were. ‘I worked, and now I don’t’. ‘I could do that thing and now I can’t’ ‘I was at ease and now I am not’. I was someone, and now I feel like nobody. You can bring so much more to healthcare than discussions of which treatment is the right one (though you can do that too).

You see power playing out everyday in GP practices (as you wait to be called in) and in hospitals (in your pyjamas). You see who has power in society and who has not. And see social injustices close up, perhaps in the psychiatric unit, or at the Job Centre when trying to get back on your feet.

You know what good and bad care looks like – you have a ‘vision’ (that’s what the experts call it) about what healthcare could look like. You know you want to be treated as a human being and not a number, you know the basic things that matter to all people who use services (not just in our own ridiculously titled ‘pathway’). You have seen dignity and respect shown to you by many healthcare professionals, but you have seen bad stuff too.

You know what it feels like to to receive an appointment letter that says ‘due to high demand, please keep your appointment’ and think ‘well, if that’s how they talk to me….’ I wonder what their care is like? You know how much it means to be offered a ‘convenient appointment’ and that someone asks you how they can support you. And when it comes to things like information, explanations, good relationships and shared decisions (let alone good treatment), you can spot the good stuff from a mile off.

If only those in power understood the passion and commitment you bring – you care. You are the only ones with real ‘skin in the game’. You bring new ideas, new ways of seeing problems and can help change healthcare practice for the better.

You will eventually refuse to be feedback fodder, to fill in meaningless questionnaires, attend focus groups  where reports will sit on the shelf, be a token representative in conversations that lead you up the garden path. You will cry out for different ways to have your say, and if you’re lucky will stumble into a wondrous garden.

So, you have passion, humanity and vision. Like it or not, you are a leader. Not in the old way – leading loads of folk as some sort of authoritarian, but you have everything it takes to work with others as a partner for change.

And yet, and yet…

You care – that is your blessing (and what got you into this work) and your curse (and what the work does to you at times). Of course, there are the good moments, the exhilaration, the payback of being listened to, or better still being able to change something. Yay!

But it can come at a cost.

You are frustrated, you may not see things changing. You get little support, it’s a constant uphill battle – you are Sisyphus. You are alone, you get triggered. Because of your passion and sensitivity you get hurt. You have no team, no one to talk to. You go home to bed and think is it worth it? Maybe you have friends you can talk to on Twitter – and between the euphemisms there, you spot the gossamer web of likeminded people. And you connect. Yay!

But you are tired. This matters so much. Perhaps too much. You wear your heart on your sleeve. The emotional labour is too much. You are still playing the game of perennial outsider – it is tiring constantly to be the ‘critical friend’ and you want to belong. But when you feel like that for a minuscule moment, you are accused of ‘going native’ (oh the insults!).

You have difficulties with boundaries between the personal and professional. When the adrenaline from difficult meetings or exciting events wears off, you cry in the toilets.

And too often, you can’t see things changing. You have to be reminded sometimes that the feminist movement took decades and is still trying to change things. That things go backwards as well as forwards – there are the Trumps of healthcare still at large. And in a recession and period of frenetic change and complexity, people lose sight that people like you can help. And the budgets for the work you do are…. cut. And oh boy does that remind you of rejection (in your life, in your care and treatment).

How do you look after yourself? How can you balance the work (all consuming) with the life of looking after yourself (all consuming). What gives?

I don’t know – please tell me. It’s more than mindfulness, a bit of poetry here and there, walks in the country, though all that helps.

It’s more than learning resilience, though I am sure a thicker skin would help. But even if you could do that (I am not sure I can) wasn’t it your sensitivity and passion that was the fuel in the first place – wouldn’t you lose your mojo?

For me, I think one way is to come to the paradoxical truth that the work matters and yet it doesn’t. That you have to continue to reach for the stars, but be OK with the moon. Keeping the professional expectation high, but the personal one a little lower.

That the work you do is only a project – only an experiment – that you are planting only one seed amongst many others. That’s the aim for me at the moment, as I step back into the role of Patient Director that has almost done me in. That means taking off the superman outfit. I am not good at that. But I know it is either that or… Actually I hate to think of the alternative just now. I almost saw it six weeks ago as I was marooned again.

I am not sure how you get to that point. I am still struggling. The freight of the work is too heavy at times. The sense of responsibility too much. But we have to find a way of lightening the load – being gentle with ourselves and with each other – yet carrying on. If you have any answers, please let me know.

Be gentle. Carry on. Good luck.

Mr Robot – musings on the personal, professional and the political

I watch a fountain, and wonder whether my energy, like that water, is inexhaustible. I continue to heal, but may need another couple of weeks off and a ‘phased return’ to my role as Patient Director.

I ponder what I can do, and can’t do. What we can do and can’t do. How the personal and the political play off each other. And, increasingly feel that I want to place my energies elsewhere. But I am 54 and need the money. And, on the whole, believe in what I do still.

Don’t get me wrong. I am going to give the Patient Director role another shot. But I have to do less, and get more support. And the organisation is supportive.

However, beyond that, I need to think. I have been in healthcare and been supporting patients’ rights for over 30 years. But I am tired. And my latest bout of ill-health almost did me in. I am squarely in a mid-life (ha! Who am I kidding, two-thirds or three-quarter life) ‘crisis’

I’ve been thinking…

Mr Robot is an edgy drama where the protagonist, Elliot, an IT genius and inveterate hacker, is haunted by his father’s presence and by dreams of changing the world and wresting control from the evil ‘E Corp’.

No spoilers, but it plays on issues of control, politically and psychologically. His struggle with himself at present (I’m on series two, episode three) is between his enforced tedious everyday regime that he thinks will preserve his sanity from internal demons, and his ‘other side’ – the one that can take over and go up against the corporate empire (but ultimately destroy him psychologically).

The Labour Party seems to be tearing itself apart too. I am agnostic about Corbyn who seems to want to change the world for the better. I was a supporter, but have gone lukewarm after the EU referendum. But I am fascinated by the way a decent bloke (on the whole) seems to have allowed himself to to be surrounded by some nasty people.

I know it takes two to tango and the other ‘side’ aren’t perfect either. But the nastiness on social media has again made me wonder about the personal and political – on the whole, it is the personal trolling by Corbyn’s supporters whenever I ask a question that has turned me off him, which is probably wrong and sad. I really can’t be arsed any more to enter that hostile territory, and need to preserve my energy.

Meanwhile, Mr Simon Stevens, the NHS England boss, another man who seems hellbent on changing the world and speaks very fast, has been working on his latest wheeze – STPs, or Sustainability and Transformation Plans.

There’s another blog brewing there. But my point here is that I have been whipped up into righteous anger by the failure of these latest plans to involve patients and the public meaningfully in any way shape or form. It is, in my view, a policy destined to fail, and based on a fear of those in power to have difficult conversations with us. When the consequences hit the streets, so will people with their placards.

This has all made me wonder whether my thirty years of work have been wasted. And instead of coming out fighting, part of me just wants to give up.

I guess I’m tired

Last week, when sitting with friends trying to plot a project, I said that we should try and do something small, something local, something real, something that gets away from the bullshit, that I had had enough of acronyms and large scale plans to change the world.

My good friend Anya De Iongh smiled and said that I had changed. I have been involved in co-founding the NHS Centre for Involvement, worked in national agencies, co-founded the Centre for Patient Leadership and wanted to set up a national network for Patient Leaders…

Now I want to sit and watch the fountains, be with my kids, write poetry and do local meaningful work. Oddly, the most satisfying ‘work’ I have done is picking up litter – tangible, focused, under my control…

Am I just tired? Is this just a sensible rebalancing of a man who still feels like a lost boy sometimes, who has never really given to himself? Or is this a re-charging of batteries.

Yesterday, I watched some videos of snowboarding champions, with my boy Adam who is now into this amazing sport in a big way. Danny Davies is a snowboarding superstar, who has been badly injured and each time come back to the sport: “Each time I get injured, I am determined to come back and do better than before, do things that I couldn’t, work harder and help the sport more”.

I am not sure I am Danny Davies any more, or Mr Robot. For the time being, I just want to be me. I’m not sure I ever have been. And I am not sure what that means. Let’s see.

Is It Worth It?

“With all the will in the world 
Diving for dear life
When we could be diving for pearls”
Elvis Costello


This morning, I noticed the trees. And a lot of other things – the wind, the rain, the clouds, my feet, my spine. I am fortunate. I have come through, for the time being, a period of extreme anxiety and OCD-type thinking. I am grateful.

As some know, I have suffered work-related stress and been off work. I think I am coming through, but am still fragile. I am on meds for the first time in 30 years, and I think they are helping. I am also helping myself – I suppose one could call it ‘self-management’. But at times, it has been more just about survival. I am grateful.

My wife, Susan has been extraordinary, and yet again I have been amazed by her cool head and warm heart. And her patience. We met in a psychiatric unit as fellow inmates, almost exactly 25 years ago. We’ve had our rough times, but have stood by each other. Love has grown in weird and wonderful ways. As it does sometimes.

This week, while she has been away with my youngest son, Adam, I have had a week with the older boy, Samuel. He is a teen who loves computer games, but this week, I have lured him away from the screens every now and again. We have gone shopping together, had meals out, cleaned the house and sat in the garden watching the cat. It has been lovely. A wonderful side effect of my illness.

I have found time to write poetry. I have again discovered that words are my real love. If I could make a living from poetry, I would. But I know that is unrealistic. Unless any of you have ideas on that score? 🙂

Meanwhile, friends have offered incredible acceptance, love and support. I have even had emails from relative strangers, many of whom have said they appreciate the work I have done over the years. I have been thrust back into a vulnerability and need for love that I have not felt for years.

And in some strange way, I think I have been nicer in the last few weeks. I am again aware of how people are not really their physical selves, but a mass of whirling sensations, thoughts and feelings – just like me.

I have, for the first time in years, allowed myself to rest, and have needed to allow myself to heal. I let myself lie on the sofa and watched the Olympics. I have been touched particularly by Lutalo Muhammed, the silver medalist in the taekwondo, who lost after being kicked in the head in the last second of the final. I am always intrigued as to how people cope with ‘failure’. It feels familiar.

Is It Worth It?

I have been doing too much as a Patient Director. My portfolio has seemed too large, and I should have asked for more support earlier. Or maybe I am not made to be a director. I have been pondering whether the stress is worth it.

When I go back, it will be a ‘phased’ return, negotiated with people I trust in the organisation (who have been tremendously supportive by the way!). I have not been able to focus on areas of strength and been drawn into situations that have been uncomfortable. This needs to change.

Beyond my own troubles, over the years, I have watched fellow ‘patient leaders’, or whatever we want to call us/them struggle to balance their passion for the cause with looking after themselves. Too many ‘relapse’ for a host of different reasons. And now I am one of them.

Our efforts will fail unless we find ways to support ourselves and each other – I am venturing out tomorrow to have tentative discussions with a few amazing friends who may help build ways to do this.

I have seen how much my body and mind need to heal. For too many years, I have been keeping myself going and been a ‘skater on thin ice’ as a therapist once phrased it. I am full of anxieties that are easily triggered. Ventures I have helped build have crumbled, and I have resurrected my career more times than I like to think about. I am also quite strong at some level, confident of my abilities (when my brain works) and pretty good at what I do. How will this work out?

I need to earn a living. I can’t afford to resign. I want to make the Patient Director role work. And I know there is deep learning to be gleaned whatever happens. But if the work takes its toll again, I will walk. And trust the universe, if I can. That is my pledge to myself.

And that is why I have written this blog. This is for me. I want to look back in six months or a year and know that I have put my body and mind first for a change. And my family. I cannot afford to go through this again.

If this blog speaks to you, that is an additional gift. Please look after yourself. Be gentle.