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 care.data. 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

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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

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

And/or follow me on Twitter @DavidGilbert43

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 care.data. 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

See my other blogs at http://www.futurepatientblog.com

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.

Sometimes A Hill: Poems written during a time of trouble

I have been unwell. These are some poems written during a period of deep anxiety. I hope  you get something from them.


At First

You were still a girl
when you set out
believing in nothing

but your arms, the pull of oars
and the small islands beyond the bay,
promising, absolutely promising

you’d be safe
and not go too far
in the weathered boat.

You rowed without thought
the light rain, at first
delighting your skin

before the sky’s battering
brought down a mauve blanket
in front and behind your blinded eyes.

And you thought of the Ark,
of granny looking out from the shore,
how water can be as heavy as a burial

how a touch of rain can be a prophesy,
even when a moment – a lifetime – ago,
you did not believe.

And what promises mean
and your lack of plans.
Then there’s the rocking and jerk and tip

and suck of cold.

You don’t remember
the speedboat that brought you back
that, at first, your granny believed

could only be bad news
or of the moment after letting go
to nature, chance, God, whatever.




He warned of the fires
that would rip at the mountainside
and spill into town
where the buildings were ready to burn.

The weather had been ugly hot
the eucalyptus on the hills like tinder.
The government didn’t do much
and the locals were asleep.

There was an arsonist on the loose
and the lazy firefighters on strike.
This island would never learn.
It deserved everything it got.

But last night, I woke
to the rain’s whispering fall.
Sometimes everything is set
yet nothing happens.



Sometimes A Hill (A semi-found poem)


There is no universal definition of a mountain. Elevation, volume, relief, steepness, spacing and continuity have been used as criteria for defining a mountain.

Sometimes a

In the Oxford English Dictionary, a mountain is defined as a “natural elevation of the earth surface rising more or less abruptly from the surrounding level and attaining an altitude which, relative to the adjacent elevation, is impressive or notable”.

Sometimes a hill

The eleven largest countries without a ‘mountain’ are The Gambia, Kuwait, Moldova, The Netherlands, Uruguay, Guinea-Bissau, Denmark, Estonia, Latvia, Lithuania and Belarus.

Sometimes a hill is

The highest point in The Netherlands is 321 metres and is shared by Belgium and Germany

Sometimes a hill is sad

Het Hogeland (The High Country) in the North, near Groningen is only a few metres higher than the surrounding land.

Sometimes a hill is sad that

In Phoenix, Arizona, there are hills called Camelback Mountain and South Mountain.

Sometimes a hill is sad that it

In Mississippi one day, a teacher told his primary school kids about Mount Everest. One of the kids asked him what a mountain was. He tried explaining that it’s like a huge pile of rocks that’s bigger than anything they’d seen, and one kid raised a hand and said ‘so, it’s bigger than a car?”.

Sometimes a hill is sad that it is not

In Lithuania, the words for ‘hill’ and ‘mountain’ are pretty much interchangeable. And a mountain can be called a mountain if it has something of interest on top, like a fort or monument.

Sometimes a hill is sad that it is not a

In Latvia, a mountain is almost anything that you need to put noticeable effort to walk onto. It’s highest peak is Mount Gaizins at 311 metres.

Sometimes a hill is sad that it is not a mountain

And, while Denmark proper is relatively flat, the Danish Crown owns Greenland (which has mountains).

Sometimes a mountain is sad that it is not a hill



The Walking

So we get to where we get to
turn around to look how far we’ve come
along the ridge.

We can still just make out the café
where we had lunch a long time ago.
The buzzard in the chrome blue sky

tells that this is where we got to
last time, when the walking
was far easier

when there was somewhere else to get to
and the buzzard told of more
than its circling.



I was trying not to think about anything
and panicking
every time my mind went blank

and telling myself I was allowed
to think about anything
and that I shouldn’t panic

if I thought about anything scary
or if my mind went blank.
Then I thought about nougat

which is odd
because I don’t particularly like nougat
or dislike it.

I have no memory associated with nougat
except the banal association
that it gets stuck between your teeth.

So perhaps it is a metaphor.
But that didn’t seem to strike true
so I thought about it some more

and could imagine
the long pink boxes of nougat
we sometimes bring back from Finland

that are quite nice
but nothing to write home about.
And that’s about it.

So I’m still thinking about nougat
and why I thought about nougat
and not getting very far.



The White Table

Instead of starting your day
you might just want to head out
into the garden

where a spider waits on thought
and the white table is dusted with leaves
that have fallen in the night.

From there, barefoot on the grass
dare to look up at who knows
what freightless birds

travel without you across
the immeasurable sky. Then
down, then feed the cat.


Say It: I Still Have Mental Health Problems

Today I made what I think was a brave decision. I called in sick and was honest as to why. Writing this is my antidepresssant.

For the last 20 years I have described myself as a ‘former’ mental health service user, or as having ‘recovered’ from my mental health problems. I am wondering whether that is true.

Over the last year, in my newish job, I have found things tough. And, to be honest, prior to that too. I have had bouts of anxiety, stress, and (yes, David, say it) depression.

I know the difference between mental (yes, David, say it) illness and this anxiety state. The former had me incarcerated and suicidal for six years a long time ago. This is very different. But the mental patterns are similar.

I do not want to wallow in melodrama, though I am rather good at that. And, I do not want the anxious concern of others (though a little reassurance goes a long way). But maybe I should admit it – I am suffering from anxiety, mild to moderate depression, and a form of mental habitual thinking that is less than helpful! Maybe I am a bit ill. After all, I am not Superman, and it is a bit of a relief to admit that.

Many years ago

When I was very ill, I had what I called ‘loops’ of obsessive thinking. I would see something, a flower, say, and then obsess about my thinking about it. The pattern went: There’s a flower. Oh, I am thinking about the flower. Oh, I am not really seeing the flower. Oh, I am observing me thinking about the flower. Oh god, I’m thinking like this again. Oh shit, I’m still ill. Oh, f()<k, why not kill myself?

The escalation happened in a fraction of a second. Every day, all day. Living through this machine gun firing of neuronal impulses meant constant pain and sapped my mental and emotional energy. It kept me focused on my internal workings and meant I missed out on external life. Underneath this ‘wired’ state was a depressive exhaustion. In retrospect, I think I had some sort of OCD, without the ‘acting out’.

I had hoped that the mental patterns that led to this profound distress had burned themselves out, and that the rewiring during recovery had left me with lifelong ease. I am fortunate that the volume has been turned down significantly, and that the anguish dissipated. Many are not so lucky. But lifelong ease? No such luck.

These days, the anxiety patterns still occur during times of stress. I obsess about a problem, and it becomes a vague visual or sensory image floating near the back or front of my mind (just behind the eyes in fact). I will think about something else, but like a rubber band, my mind (usually accompanied by a subtle eye movement and associated gut pull) will pull back to the ‘image’ or ‘feeling’.

The work to be done is to be mindful, to breathe, to come back into my body. Relaxing my eyes can help. But at times of more intense stress, such as the last four to five weeks, this continual mental work becomes exhausting.


On top of this mental pattern, I can then make up stories – fleeting, powerful, negative stories. These ‘judgements’ are the killer. Whereas my former patterns led me to say ‘I want to kill myself’, these sneak up and like the devil on your shoulder, say things like ‘there, you see, you are not good enough’, ‘you’re weak’, etc. But they are so so subtle, you can miss them and the words permeate or create the emotions and bring on a heavy sense of ill-being that tugs at the gut. Cognitive Behavioural Therapy ain’t going to crack it. Been there, done that…

No amount of mental coaxing from outsiders, let alone the trashy euphemisms spouted by the well-wired on social media, will crack it. All you can do sometimes is come back to the oldies but goldies – straightforward behaviourism… ‘this too shall pass’, ‘you are stronger than you think’, ‘one step at a time’.

And, of course, the help from friends. Today, I want to thank Annie Laverty and Chloe Stewart in particular for their listening, gentle support and encouragement. And, most importantly the advice I am so damn good at doling out to others – be gentle and look after yourself.


When I was recovering, I found myself doing more, but still feeling like shit. This was a vulnerable time. Others noted an improvement in form. I would be reading more, taking part in more conversations, able to go out for half an hour… but I would moan ‘but if I am doing more and still feeling like rubbish, then what is the point of living? If there is no gratification, then why bother?’.

My mind was fooling itself on an altogether different level. It was telling me stories that were based on an assumption (a) that one had to be happy clappy to live properly – this is Hollywood bullshit (b) that things won’t change, that this state of mind will last forever – depressive bullshit. What a double whammy from the lands of optimistic and pessimistic fantasy respectively!

Eventually – and this was the biggest lesson – and one I am leaning on as I write this, the more positive feelings catch up on the behaviours. But boy it is hard to believe it as the mind clings on to its habitual ‘truths’ grounded in the familiar neuronal circuitry.


Breaking any habit is the hardest thing in the world. Breaking emotional patterns may be the hardest of the hard. If you are still with me up to this point, you know this truth. If you know this truth, I am sorry. It means you have hurt a lot and have learned the hard way. I wish there was an easier path.

My mum used to say I thought too much. She was right. But that did not help. For those of us who suffer distressing mental patterns, the ‘choice’ to think differently is not always available. We are wired from an early age.

I think that mental anguish is particularly painful. I am not saying it is worse than physical pain. But with physical pain, one’s mind forms a relationship to the body’s suffering. It can soothe (though I also recognise that severe pain can lead to distorted thinking, and vice-versa). But with mental pain, the observer and the observed; the interpretive, critical and judging mind and the suffering mind become entangled; both are off-kilter, leading to ever more vicious spirals of distorted thinking and dramatic interpretations.

Another way through for me is to talk to others, to seek help and advice (though not too much – that way lies potential confusion from too much advice). And to write, to see the words. Hence this blog. In particular to get things ‘in perspective.

A pile of stuff

If someone else were to say to me that they had been going through the following list of stresses, I would be kind and say ‘that’s quite a lot, take care of yourself, be gentle’. But we are not our own best friends!

• New job, new role, a level of responsibility never before encountered, within a NHS that is struggling, in a service that is trying to transform things, in an organisation that is trying to model a different culture.

• Travelling a lot – being away three or four days a week for the last six weeks. As I grow older, I need to recognise that it takes me a while to get back my energy. And I have been depleted. I sometimes feel disconnected from my colleagues and work place. This leads to made up stories in my head that I don’t belong, am not supported, and other tosh.

• Not sleeping – a killer for me! The anxiety about sleep as every insomniac knows, becomes a vicious cycle.

• Difficult, new and seemingly relentless problems to solve at work that have added to the uncertainty and confusion (this for someone who finds it hard to deal with ambiguity and to trust that things will work out).

• A mid-life crisis – or, shall we say, things changing at home (kids growing up, changes in how often you are at home meaning a need to shift routines).

• Shall we add world events? I don’t think we should underestimate the impact of 2016 – it’s been bloody awful, and we should be shaken and worried about the state of things. A feverish and often nasty social media dialogue surely don’t help. I also think I am growing tired of healthcare work, and maybe I am not cut out for it any more – or at least am questioning whether what I do is worthwhile…


That last one is interesting. That is the bridge to another set of stories which, if I was listening to someone else, would trigger the alarm on the bullshit detector. It is a small, but profound leap, from the list of stuff I am dealing with (reality) to that additional story or interpretation that I am somehow not ‘worthwhile’. And that is a crucial distinction to make. But in my tiredness, it is so easy to sleepwalk over that bridge and find myself in la-la land.

I am grateful to Annie Laverty who phoned this morning and listened to the ‘pile of stuff’ I was dealing with, and told me to write it down. This helps.

One final thought – I am wondering how the above will affect perceptions of me, professionally and personally. I have written previously on vulnerability and leadership and whether a director should be able to ‘cry in the toilet’. I am all for declaring uncertainty and vulnerability, and ‘being who you are’.

All the same, to admit to this publicly in a high pressure job (or in any walk of life I suppose) is a risk. But I am not sure if there is an alternative if we want to tackle stigma. It might be easier if I had a bad cold.

I could have phoned in today without the anxiety about the anxiety, and then the guilt and the worry about what they think… but I chose to tell my colleagues. I hope that was the correct decision.