All posts by davidngilbert

About davidngilbert

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

The Weakness In Me (is no weakness at all) – a message for World Mental Health Day

I am no big fan of mental health awareness days (see: https://tinyurl.com/y8jalvzg). The ‘awareness industry’ should be more about ‘understanding’ what people go through in terms of sense of pain, choice, control and meaning (see: https://tinyurl.com/y7mk3bvt).

We need to understand why people still feel shame and stigma about ‘coming out’. Without an understanding of this, no amount of celebrity exhortation and spouting of the ‘one in four’ mantra will help. I have written about how this manifests when it comes to the world of work (see: https://tinyurl.com/y9d8nk3f).

The pivot upon which all else turns is this: That to be mentally ill, or to have mental health problems, is to be seen as fundamentally weak.

However, we dress up the language of emotional suffering or distress, we are deemed weak. Explicitly or implicitly. Pain in the brain is equated to weakness. This is the crucial disparity with physical health problems.

The word ‘weak’ has its own resonance. Weak in life. Weak in work. Weak in the head.

Some have extolled the virtues of ‘vulnerability’, thus reframing the notion of weakness (see: https://tinyurl.com/oc4brbl). I want to tackle this in a different way, by saying very simply:

1. It is not weak to get pain in the head and painful thoughts, feelings and emotions – it is the result of an overload of life. Those of us who are sensitive, curious, passionate, idealistic, etc may be more aware and attuned to the complexities of life. Some will be overwhelmed by excessive stimulus. And will be too open to an unjust world. Some are too poor, too weary, too burdened by humanity that they will crack along their fault lines. This is not weakness. Why is it deemed so?

2. It is not weak to live with pain in the head and painful thoughts, feelings and emotions – it takes courage simply to stay alive sometimes. It takes enormous strength to get out of bed often, to take one step after another when your brain is crying out for sanctuary. It can take more effort than climbing Everest to get out of your door. If you have made it this far, you are, in my book, an unsung hero. Shame they don’t do medals for us. This goes on for day after day after year after year sometimes. Crushing. This is not weakness. Why is it deemed so?

As one of my best friends, Michael Fox, once said to me: ‘David, you are stronger than you think. But not in the way you think you should be’.

3. It is not weak to be a leader with mental health problems – as well as the qualities one learns from living with intense suffering (itself a form of resilience that nobody understands unless they have been through it), you learn what it is like to be truly human. To live with vulnerability, to acknowledge people as they are with all their faults, all their inconsistencies, all their incredible warts n’all. And you can become inherently kind – this needs work of course, but the seeds are there in the wisdom and insight you gain into your own being. This is not weakness. Why is it deemed so?

I have written extensively about people who have been through stuff. How they know about stuff and can change stuff – people who have been affected by life-changing illness, injury or disability, bring jewels of wisdom and insight from the caves of suffering (see: https://tinyurl.com/yaqb5m2f).

Yes, people need support. Yes, definitely there is the justifiable fear of stigma and shame. And in the current climate, it is incredibly courageous, and bloody lonely to ‘come out’. Yes people are in pain. Yes this suffering feels like weakness at times. But it is not.

I am attending a reception at the Global Ministerial Summit on Wednesday. If I have the guts, I am going to ask political leaders to put their hand up if they have had mental health problems. If they do, I am going to applaud them. And to those who feel unable to – including those senior political and professional leaders who read this – I want you to think deeply about why not and I say:

Until you do so, things will never change. Repeat: The weakness in me is no weakness at all.

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The Stolen Pen – The resonance of anti-Semitism

My mother was nine years old when she arrived in England as a kinder-transport refugee. Her father had been forced by Nazis to paint the Yellow Star and words ‘juif’ on the pavement outside his shop in the Viennese suburbs. Then scrub it off. Then paint it again.

My mum’s parents just made it out of Vienna a few months later, but many of her relatives were murdered by the Nazis. She spoke no English and never spoke about the holocaust. My granny later suffered dementia, retreated to speaking German, and died in Friern Barnet.

My mother’s silence was a pall over our lives. My next book of poetry will be devoted to ‘mining the silence’. She was resilient but anxious and, being a sensitive child, I picked up that suppressed emotion. And suppressed my own when my parents divorced. in later years, I had a breakdown and still suffer terrible bouts of chronic repetitive thoughts and anxiety at times of major stress in my life. Some of this, I am sure, is due to the resonance of history I must have felt in the family home.

We used to go to my father’s parents for seder on Friday nights. My great great great grandfather was Samson Rafael Hirsch, the founder of neo-Orthodox Judaism in the second half of the 19th Century who promoted a practical and ethical following of the Torah against what he saw as the splintering of Judaism through the reform movement and assimilation.

My grandfather had come to England in 1913 before the first world war. His family changed its name from Guggenheimer to Gilbert as the former was too Germanic. Assimilation has always been one tactic of the Jew. But invisibility carries its own risks.

Grandpa Joe was the kindest person I have ever met. He founded the Hillel movement and on student campuses, there are ‘Gilbert Houses’ for Jewish students. My great uncle was a communist. My great aunts were leftist zionists. My grandfather and grandmother proud and spirited supporters of the new Jewish state. They all saw Israel as the necessary homeland after six million of their brethren had been wiped out. And they believed in a socialist state. I have cousins in Israel who would vehemently oppose my political views now.

My uncle was an educated gay cosmopolitan Jew who worked throughout his life for the cause of better Arab-Israeli relations. He played a central role in helping the Falasha Jews move to Israel in the early 80s. And set up many vocational endeavours that spanned Arab-Israeli boundaries. He worked to help liberate young women from the Haredi orthodox sect and set up the Jewish Aids Trust. His partner, a Swiss non-Jew, an abstract artist worked for the International Red Cross. My lovely uncle Robin was best friends with Rabbi Lionel Blue, who made a speech at my wedding – talk about people who tried for peace!

(As I write this, a robin comes to feed off tea cake crumbs on my plate in the garden! The notion of Jews feeding off crumbs comes into my mind).

Being a Jew

Being a Jew is not simple. They say ‘two Jews, three arguments’. I have mixed feelings about Israel, to say the least. And about being Jewish.

Politically, I am a soft-lefty. I liked what Tony Blair did, until the war in Iraq. I was a Labour Party member and have always voted for Labour.

Internationally, I have grown to dislike what the Israeli government has done, and is doing to Palestinians and see the injustice. I am ambivalent and torn about the cause of zionism. On the one hand, I bow to its necessity at that historical juncture. And yet I weep sometimes for what it has become.

But I hear too much from the left and from pro-Palestinian leftists (themselves seemingly unaware of how they are being ‘played’ by wider forces) about ‘destruction’ of the State of Israel.

And I have come to dislike Jeremy Corbyn for his continued inability to tackle anti-semitism, at least as much as for his collusion in Brexit (IMO). Yes, I know the right wing forces control the media. Yes, I know the Israeli government are stoking some of this. I am not a fool. But you have to understand the resonance of the current discourse for people like me who have known of ‘denial’.

We have also heard those words ‘destruction’ before. How do you think that sounds to the son of my mother. Where do people want Jews to go after ‘the destruction’ of Israel? Or do they want Israelis to be destroyed too?

We tried to assimilate and we got wiped out. We set up a State that has gone in the wrong direction, and extremists want to wipe that out too. Nu?

This is not simple for me, and I am trying to work out what a Jew who has married out, who has two sons does with his Jewish heritage.

What I do know

What I do know is that I did not ever think that I would witness the rise of the far right. Or of the far left in this country. And their virulent intolerance – of Muslims and of Jews respectively. Both far right and far left have hatred running through their veins. And lets not even talk of Trump and the forces of Brexit. Remember, ‘first they came for the Socialists…’

Oh how I wish Jews and Muslims could come together at this moment to realise their common experiences. We are being played by wider forces. And both religions have peace running through their veins. More in common than that which separates us. I am agnostic, but feel that the true spirituality and humanity that breathes like a wind through true Jews, Muslims and Christians, despite what human institutions have done to us, is a force for good.

But let’s come back to earth. And psychology. I write this not primarily to make any particular political point. Am no historian or political writer.

The Stolen Pen

I write more of a fear that rises in me – to describe the resonance I feel when non-Jews try to articulate what being anti-Semitic is and is not. And how, to me, that sounds perilously close to denial. A closing down to another’s experience. An ‘othering’ that resonates for Jews who are only, at most, one degree of separation from the six million who died.

I have never, as a white, tried to describe what anti-black racism is or is not. I have never challenged a black person when they say they feel discriminated against.

I have never, as a man, tried to describe what feminism is, or is not. I have never challenged a woman when they say they feel discriminated against.

Anti-semitism is one of the oldest forms of persecution – the idea of the invisible enemy within is a trope of both the left and right. But I thought the left in the UK – where tolerance has usually reigned – knew better. There is a better leftist to be revealed than that currently on display. And it comes as a shock, but no surprise that many on the far right have come to support what Corbyn has said in recent days.

Corbyn argues he is using the ‘right terms’ for zionism. That he wants us to understand ‘irony’. That he never inhaled. That he never had sexual relations with that woman.

Semantics. Shmemantics.

Yes, it is time for diasporan Jews to question and challenge the Israeli government, and (for people like me) to once again, like my uncle, strive for dialogue and peace. Between two states.

But it is also time for those who deny anti-Semitism in the UK and the left and the labour party to recognise what they are doing… before it is too late. I am a Jew. I am human. In fevered times, we need to pause. Stop the hate.

I have been looking for, am looking for, ways to forge dialogue – whether in the health service, in mental health, through arts, and perhaps in Arab-Israeli Jewish-Muslim dialogue like my wonderful uncle.

Maybe I can help a little though writing? I don’t know. My mother told me once that she stole a fountain pen from her father and smuggled it deep inside her coat pockets the night before she left Vienna.

Dear Mum. I am holding on to that pen, metaphorically.

Shalom.

© 2018 David Gilbert

Asking The Wrong Question: ‘How Can People So Cheerful, Talented and Beautiful Kill Themselves?’

Another teen kills herself at 18 years old. The media is lit up with quotes from loved ones and friends about how ‘talented’ she was at her chosen sport, with so much to live for, how ‘cheerful’ she had been, even days previously, and how ‘beautiful’ she was. The media echo how shocked everyone is. How could someone with ‘everything to live for’ want to die?

Who knows what happened. I have my own theories, as we all may do if we dwelled. It is lacking in respect to speculate too much, to intrude on bewilderment and total grief. As a parent, it would be unbearable.

But here is what I do know.

At 18, I was talented and seemingly cheerful. Friendly, caring, sensitive… more words that meant that those who knew me would have been shocked that I was treading on thin ice. That I may have been intellectually capable and apparently calm, but underneath I was fragile.

It was at that age roughly that I hit my head on a wall when a girl refused to go out with me. It was a year later when I couldn’t sleep with worry about my university essay. Another year later, and I was having daily anxiety attacks about the work I was doing.

And at 25, much to the ‘shock’ and ‘bewilderment’ of my loved ones, I had a massive nervous breakdown and was unable to cope with life or my mind for another six years.

I have written a fair amount on that time. But there are one or two main points that I think are worth considering here.

Firstly, it should come as little surprise that someone who is outwardly cheerful, should be suffering. What is more surprising is that we don’t learn. Time and time again, loved ones and friends (and the media) grip to their awkward beliefs that this ‘should not have happened’, that they have somehow been duped, and that outward appearance mirrors what lies below. How dumb are we, societally, not to learn?

Secondly, people tend not to be curious about the pressures that must have surrounded someone who kills themselves. People are wary of looking under the rock – at the reality that those who kill themselves often may be driven perfectionists, incapable of living with their own faults.

I vomited with anxiety most Saturday nights before swimming galas when in my early teens. The signs were there. I did not know how to deal with fractures in my self-worth and felt I could not be anything other than perfect. At 56, I still live with that unfortunate legacy. It is not about blaming families or loved ones – my parents did all they can, and had their share of pressures themselves.

It is more about finding ways to check in, finding ways of assuring kids that they are loved and worthwhile even if they fail sometimes. That, as humans, we are enough. Societally, we are so far from being able to do this, it almost unbearable to witness these days. And, during such volatile times, being ‘good enough’, cultivating character rather than personality seems so old-fashioned as to be almost ridiculous. Almost.

Thirdly, it is not enough to put at the bottom of an article, akin to the small print in a contract, ‘go seek support’. It is patently inadequate merely to urge people to ‘talk’. It seems particularly contradictory when pinned as an afterthought to an article on the cheeriness of the person who has killed themselves! The whole thrust of articles on ‘young’ ‘talented’ ‘cheery’ ‘good looking’ who have killed themselves is to convey this sense of denial and a ‘how could they’ tone that drives curiosity away.

A little note urging people to talk is a sticking plaster. This is almost irresponsible journalism – insidious and hypocritical.

Fourthly: As a teen, I would not have been able to talk, to articulate what I was going through. In the bubble of my sense of perfectibility, I did not have the language or self-knowledge to express what I was feeling. I would not have been able to admit to doubt, without a huge wrench opening up in my world. A crack that would turn into an abyss. If you had asked me how I was, I would have said ‘fine’. And would not have been ‘lying’. Life (and not feeling well) is not as simple as the ‘let’s talk’ brigadistas suggest.

So, what helps? I am not sure, but I know the rest of my life and career will be spent trying to find out how to help. I guess the first thing – maybe the only thing I know at the moment – is that if you know any youngster who is cheerful, talented and, yes, even beautiful, don’t wait to reassure them that they are loved for who they are, not who they are outwardly or will be in the future.

I really don’t have answers, but I know better questions. They do not revolve around ‘how come someone so cheerful kill herself?’ It is about asking ‘what can I and we do to make sure kids feel OK about themselves?’. Somewhere in that morass, lie some better answers…

© 2018 David Gilbert

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

Harnessing The Renewable Energy of Simon Stevens

I wasn’t going to write a blog. Poetry in the sun beckons. But I blame Ally for goading me on twitter.

It is always though a pleasant surprise to wake up to the latest nonsenses of Simon Stevens and his well-paid crew. Having seemingly had little success boshing the big boys in acute trusts through new care models, STPs, ACSs, ACOs and now commissioning alliances (not to mention the expense of all this rebranding and re-logoing)… he has pushed his new medical director to play bad cop.

The NHS is set to save £200m by banning useless, risky and unnecessary interventions. What could possibly be bad about that?

(Don’t get me wrong, a lot of that stuff is unnecessary, but it’s not quite so simple).

Well, for one thing it shows that NHS England has given up on trying to change systems, engage stakeholders and foster collaborative leadership, partnerships and transparency. In its increasing desperation it has adopted populist tactics that appeal to demagoguery.

Out has gone any pretence to involve communities, patients or citizens in discussions about rationing or prioritisation. Actually, money for that went a while back.

I get that as, to be honest, SS has never really understood how to do that listening and working together thing. To lampoon someone who has talked about harnessing the renewable energy of communities for co-production is too easy. The only renewable energy he could and should be harvesting is his own wind. Though I do have another option (see below).

What is a little more surprising is not his lack of integrity. That was always pretty obvious. But his boys thinking that a ‘just say no’ policy will work. Is he stupid as well as unethical? I could not possibly comment. All I know is his and NHS England’s leadership credentials are buggered.

As any good (or even bad) quality improvement acolyte appreciates, changes like this have unintended consequences. Firstly, all those hospital trusts who will potentially lose out on repeated income from, say costly orthopaedic interventions will cry foul and will begin again now to talk about ‘destabilising the health economy’. So, some of the big ticket items – the things he wants to happen – just won’t happen. Power is power – and that lies still largely with acute hospitals, medical professions and big pharma.

Secondly the temptation to blame those feckless patients for ‘demanding’ treatments will become irresistible. There is no money in the wider economy to pay for what people should have access to – support for well-being in the community, walking clubs, free gym prescriptions (let alone better housing). The money saved will not be spent elsewhere (it never has been) and people will be orphaned from any care and support whatsoever. But much easier to blame the victim and those who are powerless and in love with the NHS (and those who pay your salary, Mr Stevens). Loyalty and guilt are always a point of leverage for the privileged.

Thirdly, complaints will soar, frontline admin and non-clinical services will be flooded with complex conversations to be had. It will not be enough to print a few A5 leaflets saying in red bold 14 font that ‘you have a responsibility not to ask’ for unnecessary stuff. Comms campaigns will be rolled out (many comms leaders are on £100k plus) run by those friends of the NHS, like McKinseys. Money will be found, new branding imagined, infographics produced, breakfast seminars well-pastried.

Meanwhile, It has taken big pharma decades to build an industry that persuades docs to prescribe antibiotics to humans and your pet cat Tiddles. A few leaflets on ‘don’t ask for drugs’ has not stemmed the tide of a medico-institutional industry bringing a worldwide threat of antibiotic resistance to your child’s front door. Expectation and demand can only be solved by patients and citizens in dialogue and positions of decision making to bring about sensible upstream solutions. This is about power really.

But it is more convenient to be a dictator. This seems to be SS’s last stand. It has the hallmarks of a desperate man who has totally lost his rag.

But try not to feel sorry for him. He is on £200,000 and had a jolly period at the elitist end of the management consultancy market. His senior management team and many in regional offices and other outdated national and regional quangoes are not far short of that figure.

Add all those heads and transformers in national research bodies and the opaque world of AHSNs, Public Health England, CLAHRCs, Leadership Academies, Health Education Board, weird horizonal improvement agencies where infographically entitled instagrammers spout their absurdities… the loveliness goes round and round as they swap seats with each other.

Oh did I mention how much money the think tanks have? Sadly, that is not renewable, ‘cos of no possible citizen say. However, one would like to imagine erstwhile philanthropists and royal endowment funders turning in their graves at the expense of raisin buns.

Meanwhile the benefactors of the policy and thought-leader (ha-ha-ha) industry continue their ghostly shift up and down glass lifts and continue to schmooze with Jeremy and Simon. And oh those reports repeating sad stats that fill shelves (just think of all the poetry that could sit there brimming with more insight).

All of which fantastical verbage reminds me of another potential route to help heal our (yes ‘our’) healthcare system. But that would mean also harnessing the renewable assets of that coasting under-performing workforce – national leaders.

The CQC costs me and you £200m a year. Coincidentally, that is precisely the amount that SS and his gang want to save with this ‘ban’ on treatments. There are 500 Trusts, CCGs, etc with each of their exec team earning around £100-£150k. 10% – 15% ‘leadership tax’ would save about £50 million.

Plug in the entire management team of the 50-100 quangos (including regional offices etc) and you could easily take that up to £100m.

So, a 10% salary cut for national leaders (allegedly) plus halving the budget of the CQC would save you and me the £200m touted this morning in the tabloids.

Theresa May, bless her, has chimed in that she wants to ‘listen to the people’ as to how these sorts of cuts can be made. Listening to the above? Mwahahahahahaha….

As I write this in my local café, the radio plays the Monkees’ ‘Daydream Believer’.

Hey-ho. I’m off to write poetry in the sun. More effective. Certainly more fun.

 

© 2018 David Gilbert

 

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

ReVerse – How poetry can make the NHS better

Why poetry is important 

Poetry offers a quivering attention on the present, a luminous slant on intention and a myriad of refracted potential futures. It can reframe problems and provide insights into new ways of doing things.

It is inherently a slowing down tool. And places itself in opposition to our frantic habitual natures and the almost incessant stimuli surrounding us. It is also a widely misunderstood and beautiful art form.

In order to attend to the words, the sound, the rhythm and the shifted perspectives of poetry, you have to throw yourself into reverse gear. And put on the brake.

It is all too apparent to me – in my personal and professional life – that the one thing we cannot do in the NHS is to stop. And, ironically, it is the one thing we have to do. In order to reflect on practice, in order to listen, in order to communicate, in order to share. Everyone is shouting, few are conducting any form of conversation.

Now, more than ever, we need safe places to have difficult conversations. Partly because the healthcare system is in crisis. We all know that. But also because we are unwell.

People who use services are obviously unwell. And, on top of that have to face multiple system challenges to get high quality, safe, continuity of care. The frustrations of not being treated as a human being, with healing connections add insult to injury. And, as I have pointed out many times previously, the way we ‘do’ engagement, and the wasted effort expended on mechanisms that fail to have an impact and buffer people from power, further exacerbate a ‘them and us’ culture.

Staff are increasingly distressed within a turbulent, top-down, forever changing and complex environment. Staff wellbeing initiatives are usually focused on being ‘resilient’. I once saw a poster on a wall in a NHS office: ‘Overwhelm is a choice’. As if we can lay blame on individuals with little power within the system to change things.

Arts and Health – From Narrative To Verse

The All-Party Parliamentary Group on Arts, Health and Wellbeing (APPGAHW) report stated: “There is comprehensive evidence and numerous examples of practice which demonstrate the beneficial impact of the arts. However, the potential contribution has been all too little realised”.

Most arts and wellbeing programmes focus on music, dance or visual arts. The APPGAWHW report cites 3333 references to ‘art’, 326 to ‘music’, 173 to ‘dance’, 57 to ‘literature’, 25 to ‘writing’, 18 to ‘poetry’. Few case studies come from the poetry world.

‘Narrative’ and ‘story-telling’ are becoming more valued in healthcare, but poetry is seldom utilised within learning and development, quality improvement or research. Patients may be encouraged to write ‘cathartically, or seek solace in traditional forms. Individual poets may be commissioned for broadcasting messages and a few initiatives stress verse as part of a wider movement to articulate experience. The medical humanities may nod in the direction of verse from time to time.

Poetry – an oblique strategy

Fiona Sampson highlights poetry as an oblique strategy to open new windows on dark worlds. The APPGAWH states: “poetry appeals to similar parts of the brain as song, performed poetry escapes the definitional constraints of the written word to communicate through repetition, rhythm, syntax and movement experienced in the moment”. Yet the dearth of high quality interventions that harness the potential for verse to be an instrument for wellbeing verges on shocking.

Poets often dwell on ‘darkness’ and many collections deal with ill-health, cancer or dementia particularly. But there is less frequent exploration beyond the surface of mental health (e.g. meanings of different diagnoses or types of trauma). People could use poetry to articulate meaning, make sense of their worlds in different ways in order to understand, elucidate and lay claim to the words that underpin or can prevent well-being.

Staff now share many of their clients’ problems. The APPGAWH highlights “poor-quality work combines high demand and effort with low control and reward. The main causes of sickness absence are anxiety, depression and stress. Arts engagement at work and in leisure helps to overcome anxiety, depression and stress”.

Arts and humanities should be embedded in training and professional development. Dr. Alec Grant, an independent scholar, states: “Mental health workers are un-reflexively trapped in the psychic prison of rationality. Any perceived inappropriate displays of emotion from people who aren’t patients/users is disparaged. This displays wider assumptions about the need to demarcate ‘mad’ from ‘sane’ behaviour, speaks volumes about how out of step institutional cultural mental health practice is. Emotion as a resource in MH research is disparaged”.

Poetry could explore particularly the relationships between staff and service users, so as to ‘equalise spaces’, reframe experiences, promote trust, shift dynamics and reveal shared insights.

Many people will have suffered through poor educational experiences, not be able to read or write, or will not have English as a first language. Poetry can be seen as elitist or ‘difficult’. Part of the challenge for poetry in health care is to break down these barriers in different ways (using story-telling, verse or song from different cultures, spoken word, performance poetry, lyrics etc).

The time is ripe for fostering ‘equalising spaces’ for people to come together in safe, creative places – to discover the joy of collaborative efforts in the most liberating of art forms.

This is why I am launching ReVerse – Artful dialogue between staff and service users 

I am now running programmes that use poetry as a shared language for engagement and in order to reimagine mental health. These will create healing relationships and ‘equalising spaces’ between people who use mental healthcare and staff through reading, writing, reflecting, reframing, inspiring and improving together.

I am delighted to announce that our first programme is being run in Manchester in July. If you want to find out more, or are interested in running workshops, please get in touch: davidgilbert43@yahoo.co.uk

(c) 2018 David Gilbert

If you enjoyed this blog, there are plenty more at http://www.futurepatientblog.com

 

Improvement – It’s Bloody Hard Work!

As I left home at 5.00am this morning, I thought of my courageous friend Ally and ‘that’ blog. How she has called out the ‘shiny’ improvement movement. And how tired many Patient Leader friends are of the work. And I thought of the personal price I have paid over the last three years – three scary mental health relapses.

And of the work that has gone into getting this far with my amazing colleagues at the Sussex MSK Partnership – how the Partnership has delivered, improved and changed how services are delivered, at a time of huge pressures in the NHS.

And how we have sweated together to undertake a different approach to being ‘patient-centred’ and holding close a model of ‘patients and carers being true partners’ in improvement work.

Patients as Part of The Team

When we formed our pool of Patient Partners – eight fab people, valued, paid and supported to be part of improvement work – I always wanted us to move into the heart of decision making. I wanted them to be at every MDT, the regular meetings of practitioners overseeing quality in each of our musculoskeletal pathways (orthopaedic and rheumatological, pain management and physio).

That was two years ago. First we battled hard to get their places as more than story-tellers and feedback fodder in redesign work – the partners proving themselves well able to reframe problems, generate new solutions and model collaborative leadership and shift dynamics. They have become trusted equals in any improvement processes. It has not been easy and is dependent on time, money, space, trust… all the things the NHS has precious little of.

And when I realised we could not ‘supply’ two patient partners in each of our eight MDTs (not enough budget, not enough capacity, not enough time on agendas), we switched paths. In recent months we have been talking to Kieran Barnard, our lead for the ‘hip and knee’ pathway. And three of the patient partners have planned a pilot for how patient partners might be involved. The idea being to hold a ‘special MDT’ to focus on issues of quality and patient experience. And for us to see how this went and whether it could be a model for other pathways.

Meanwhile, over on the data side of things

At the same time, we have been gathering a shed load of patient experience data, but my tiny team (basically two of us, me and the special Anna Roberts) have been bogged down in ‘feeding the beast’ – gathering data, analysing hundreds of qualitative comments and corporate reporting. We have not been able to move into the space where we could feed the data to the right level and work with teams to use the data for improvement.

So, I have been aware that the last two years have been about, on the one hand building the foundations for the patient experience data machine so as to generate useful data, find capacity for analysing it, and mechanisms to better report (as well as making sure we could find out what is done with it) and on the other building the case for, and capacity of, patient partners.

Shall I say it again? It’s been hard. And all the while, my colleagues have been working equally hard, more so, to deliver the service and also introduce more patient-centred practices, alongside our amazing colleague, Chloe Stewart, who has supported them to undertake shared decision making and signposting to supported self-management.

It’s been a long journey

So, today, I woke up at 5, drove around the M25 to a small meeting room at The Vale Surgery where the Hip and Knee Pathway Team met at 8.00am. And I met Jenny, one of our Patient Partners outside to discuss our half hour slot. This was to set out how we were collecting data and discuss staff issues and concerns around people’s experiences of services – and primarily to get agreement in principle for a pilot ‘special MDT’.

And, as with all plans, as with all work in the NHS, as with life, the minutes ticked away as other agenda items ate in to ‘our’ time with Kieran doing his best to cover what needed to be covered, all the while glancing nervously at me and Jenny!

With 15 minutes till the end, we got our go. And we made our case and listened to what came back. It was beyond our wildest dreams.

Many of the practitioners stayed behind to discuss how patients and staff could collaborate. They wanted more – they wanted to hear about experiences, they wanted to talk about patient and staff assumptions, they wanted to explore difficult issues, they wanted patients as part of the team, they wanted to find a way forward. They were hungry for time and space to reflect together (and ‘together’ meant with patients!).

And so, next MDT we will have an hour’s ‘protected time’ for an agenda that will include a focus on a hot topic, how we use data and how we can ensure patients are part of regular MDTs, and this could pave the way for a different model of reflective governance across the Partnership (maybe?)… Our work is done.

Almost…

Meanwhile, next week
• We will have ready a People Bank of about 200 MSK patients across the patch who have volunteered to take part in ad-hoc involvement activities
• We will launch a new improvement project on how patients can better prepare for consultations after referral – it will have patients on the core working group as well as ongoing engagement work to design the information aspect of things (i.e. The forms that patients fill in about what matters to them that practitioners will have with them when they come to an appointment)
• Patient partners will lead an hour and a half workshop at our staff event on access, inclusion and diversity
• Anna and I will present plans for a more systematic way of using patient experience data
• Me and another patient partner will meet with the rheumatology team to think through better ways to gather information on what matters to patients who come through the rheumatology service

In addition, the next Patient Forum in June will focus corporately on how we use patient experience data and also be a place where we can reflect on work so far

This stuff is not shiny

A few weeks ago, I was ill. Suddenly, the jigsaw pieces of the Patient Director work are coming together. Weird. Wonderful.

Thank you to all our colleagues and patient partners for helping make this happen.

And, as I was driving home, I thought of brave Ally and the shiny improvement brigadistas. Those who seem to me to assume that infographics and conferences will change the day.

This stuff is not shiny. This stuff is hard. This stuff takes a fuck of a lot of blood, sweat and crying in toilets. It has taken three years for this stuff to begin to take off – months of building relationships, doing the ground work, making the case for a form of engagement predicated on two things:
1. People with experiences of living with long term conditions or life-changing illness, injury or disability bring wisdom and insight from the caves of suffering
2. Those same people can help practitioners and organisations in their work and to improve experiences and quality

The only thing that’s shiny (and temporary while I write this) is the sun. May you have a shiny weekend. And undertake not-so-shiny improvement.

(c) 2018 David Gilbert (all views expressed here are my own)

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

 

 

 

Don’t Be Scared To Show You Care – how to respond to a loved one with mental health problems

A friend asked on twitter, is it OK to wish you better? I replied ‘why not’?

It reminded me of the psychiatric ward many years ago. There were few visitors. And nobody brought flowers. I had one ‘get well’ card from my mum until it got ripped up by another inmate.

You who do not know mental pain, but mean well (and nowadays that is most people I believe) tend to stay wary of how best to show your care for those going through emotional hell.

Why?

Is it because you are worried, lest our emotional volatility erupts in ways unintended, and your good intentions are misinterpreted. Are you worried more about your own feelings, of being misunderstood? If so, get over it. But I am not sure that is it.

Is it concern that you may cause additional offence? How? By being patronising somehow? Getting closer here I think…

Perhaps a bland set of phrases (they are a bit cliched aren’t they? Get Well or I Hope You Feel Better Soon. Thinking Of You) cannot account for the nuances of emotional suffering.

Are flowers too crude a gesture? Do they intimate too much colour? Too much hope?

Thinking of ‘get well’ cards. I look forward to the day when some insightful artist takes to the page and I get a card saying ‘Get well get well get well from your OCD’… or not. Is that the point again? That it is too close to offence? That because many do not understand the nature of mental suffering then the fine line between humour and offence is too risky? Maybe.

When I was ill a couple of years ago, my boss and I did not talk about whether it was OK to disclose to others that I was unwell and why. As a result, I got a card signed ‘From all of us’. This exacerbated my feelings of being isolated. But how were they to know? They were doing their best.

In some ways, we who are suffering need to make it OK for others to show they care – this seems a bit weird and a lot of work when we are already going through so much pain. But the consequence of not doing so may be….

(silence)

It is my own personal opinion (everyone is different) but I would prefer you to say something to show you care, than be silent. For silence exacerbates the gulf I feel between my feelings of badness and your seeming world of normaility. I may not reply (give me time, I do need rest perhaps) but you will have been heard.

Caring is always a tentative craft, balancing the encouragement with the reassurance, the gentleness of advice to rest and take it easy, with the exhortations not to lose hope for the future. Carers are careful not to add insult to injury, literally. In mental health, that anxiety about offence may be more top of mind (sic).

(By the way: The phrases to avoid for someone whose brain, mind or feelings are clouded in black is anything to do with witnessing colour – in other words, I will actually bite you in the balls, or wherever, if you say anything like ‘cheer up, or ‘be positive’. There are other things you can say surely? I have received wonderful twitter messages, but the only one I have not ‘liked’ is one that has told me ‘how wonderful the world is if only I could see it’. Er. No. Blocked)

During my recent bout of awfulness, I made a point of writing a note to colleagues that it was OK, it was more than OK, to get in touch, to ask about things, to show they cared. And last week, I got a card that made me teary, signed by everybody. I didn’t feel quite so alone.

So, if you are worried about a loved one who has mental health problems… don’t be scared to show you care. Send a card, send flowers, send a little of what is in your heart. You may get it wrong. And if you do, use it to explore what it is you can do or say next time that helps. But in fact, your caring may help do a tiny bit to prevent a next time.

And if you have any other ideas as to what gets in the way of being able to say you care, let me know.

NB. I have written several blogs recently on trying to come through mental health problems. This was the previous one… about ‘refinding balance’ and what I have learned about tactics for ‘recovery’. I also write poetry and have said more in poems about my ‘journey’ than in prose. You may like these poems (or not!)

 

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

© 2018 David Gilbert

 

The Re-Balancing Act – recent mental health problems, ‘recovery’ and living in a mad world

For the first time in three weeks I have found a small oasis of peace in my head. And I am grateful. I can sit in this chair and watch the small pink-blossomed tree under the street lights and listen – truly listen – to the quietness of the house. Albeit punctuated by the ad-hoc screech of teens.

I have begun to come through a third bout of mental health problems in three years – more specifically, repetitive disturbing intrusive thoughts (perhaps a form of OCD). These return bouts of mental unwellness have mirrored my period of time as Patient Director, and the first one at least was due to work stress.

During the last three weeks, I have found myself trying to fend off feelings of deep emptiness (as if I did not exist – an ‘unbearable lightness of being’) and of circuitous horrible and intrusive thoughts (the pain of thinking). I have wanted to both escape the silence and the noise – mostly to escape ‘myself’.

The only way through for me is always a deeper and deeper acceptance of the emptiness or the almost paralysing thoughts. In a way, my ‘illness’ seems only to be countered by acceptance of it. It is the fear of the ‘emptiness’ and fear of the ‘thoughts’ that sustains the distress.

I have got through (at the moment) by focusing on
– Acting as if (continuing to find ways to function, despite my mind and body screaming at me that it is all futile)
– Coming continually into my body through using mindfulness techniques (I have also been finding ways to relax my eyes as much as possible – the eyes have a huge part to play in anxiety)
– Being as gentle at a practical level as I can (finding the balance between rest and activity)

NB. The drugs help a bit too!

I offer the above for those that may find that three-way approach useful. It may not be. But you never know.

So now what?

So, now, as I reach the age of 56, I need to think carefully about how to look after myself. As a professional about where I can make most difference – hopefully one day in mental health and through my writing. As a father, I am thinking more of my children’s future than my own.

I have emerged into my own fragile state of calmness as the world descends into its own calamitous breakdown. I do not often pontificate about the state of humanity, but I think the current global volatility and widespread nature of disturbed and polarised thinking, point the finger at an aberrant species suffering from a collective nervous breakdown.

I believe there are strong parallels between our individual and collective mental health. And that our emotional and mental wellbeing is the singular most pressing problem of our time; that it lies behind all other causes of strife.

We need to refind our balance (which includes equalising power, not just silly rhetoric about compassion or positivity). We need to find it all levels – within ourselves, between mind and body, between our thinking and our emotions, between each other as individuals and at global systemic level.

We are – all of us – seriously off kilter. Unable to sit in a room quietly. Unable to resist addictions – whether it be stuffing ourselves with food and drugs to stave off feelings of emptiness; or grazing across social media trying to stimulate the ‘enjoyment’ buttons for fear of lapsing into a vacuum of emotion; filling ourselves with ideologies or beliefs that provide a temporary illusion of rightness and self-serving identity to fend off our own sense of nothingness.

Whatever it is, we continually try to fill ourselves with something to fight off our own real sense of who we are – fragile concoctions of swirling sensations and thought overlaying some weird and very quiet life-force.

We are fearful of just being. Just as I have been for the past three weeks. We fend off fear. And in so doing serve to create it. This is as true for the world at the moment as for us as individuals. All of us, I believe, have a duty not merely to be ‘kind’ or ‘compassionate’ or whatever the current fashionable term is, but to find balance.

This may not be the most coherent of polemics. And I may be straying too far in my reach. But as I watch the tree with pink blossom under the street light, I know the above to be ‘true’ in the core of my being.

Be gentle and look after yourself and loved ones – and even perhaps those you don’t.

© 2018 David Gilbert

 

 

A Little More…. (another note to colleagues about mental health and unwellness)

As some of you know, I wrote to my colleagues at the Sussex MSK Partnership (Central) about what I am going through. I received a lot of messages of love and support in return. I have also received a lot of those things from readers of my blog. Thank you.

I have followed this up with another short note this morning. I hope by posting this as a blog again, I can encourage a little more gentleness, a little more hope, a little more understanding. And a little less stigma.

___

Dear all

Thank you for all your kind messages of care and support. Not only do they help me, but I think the dialogue continues to break down the stigma of mental health problems.

It may not be as easy to reach out to a colleague in mental pain as it is to do so for someone in physical pain – why, I am still unsure.

I am slowly getting better, I think, but like anyone who is ill, it goes up and down. And because the brain is unreliable, it is hard to judge.

But I hope to be back in the office next week. I have been kindly supported to continue to work from home.

If anyone is interested, I write poetry, and this has helped a little too. You can find recent ones here

I have added names on to this list that were not included previously. Do feel free to pass this and the original message on.

And do stay in touch. It makes things less lonely – which is also one of the consequences, of mental health problems themselves, of people’s uncertain and anxious responses and the stigma.

Best wishes to all you good people

David


 

More blog posts at http://www.futurepatientblog.com

Just There: More poems through uncertain times

Another rough time. More poems. Mostly written in the gorgeous Trent Park in Enfield. I hope you like them.

My new collection ‘Elephants (Fragile) is out now, published by Cinnamon Books. It has just been longlisted in the Saboteurs Award for Best New Pamphlet.

Signs

I am unsure whether I am well or ill
the morning is suspenseful
with mind having slipped its mooring.
We look together for signs

but ignore
the tree out-wintering its leaves
puffed up sparrows in the sparse branches
or yesterday’s spotlit blossom

and cannot gather in
the touch of friends. Here instead

is a dead fox
by the side of the main road
struck, lifted across the traffic and laid down
by a killer’s gentle hand.

Nevertheless

A thrush, I think, sings from its thicket
and I step out from the path
through churned mud and grass

closing in, now with my glasses on.
It is a thrush. Definitely.
I make out the speckles on its breast.

Probably a song thrush, perhaps
a mistle thrush. Nevertheless
it sings. Not one

melody, but a weave
of clear-throatedness

gathering the disentangling sky
while nearby a silent blackbird looks up
at the hovering sparrow hawk.

The Stone Cat

Yesterday the stone cat was a door stop
and we walked in from the sun

without noticing her. Today
she is inside with the rest of us

who won’t leave for a while.
Miserable weather says one.

Marmalade and tan and lifelike,
white chest and pricked up ears

looking up at the heater.
I try for what she hears:

mutterings of passers by,
curtaining rain on the roof.

I ride out the morning
with tea and milk in a plastic cup

reading the wallcharts about animals:
A squirrel’s nest is a drey.

I now know the difference
between redwing, thrush and fieldfare.

Heaving for definition, certainty
sanctuary, but learning more I hope

from creatures real or otherwise
that don’t say much.

Nice

“Unless you’re wearing really good waterproof boots
the paths can be a bit tricky
but the sun is coming out soon
and that will be nice

I’ve got daffodils coming out this year
and that will be nice

We went to see Paddington last week
and that was really nice.

I have to say
my daughter is coming over from the States in June
and that will be nice too”

Another Small Bird

It is a surprise to feel the feathery weight
of another small bird
landed on my narrowed shoulder.

It has come a long way
but from where?

I am unused to a chirrup.
A pathetic little sound
in the scheme of what is happening.

It takes a while to attune. Longer even
than the curved spine to straighten

or shoulder to fill out
so that it can settle to its song. Longer
than an overture to intuit, write
then orchestrate, let alone to air

and how to discern
a note within the bedlam?

Yet this small bird waits – being
the smallest of its kind, hardly
distinguishable from the rest.

This Morning Forever

The gap-toothed girl in red shoes and pink helmet
pumps her scooter down the long path
swerving through dogs and oncoming joggers
ponytail flying loosed from its ribbons
tongue sticking out like a lollipop

then way way off she stops and laughs
out loud for nobody but herself
this morning forever the universe
bright stars blazing on her blue jacket
and a Yorkshire Terrier rolls in the grass

Acceptance

I have grown tired of thought
and with eyes lowered
do not look ahead.

I have no choice but to fall
in love with the ground
more than with what

may be above. And the path here
is no longer a path
but mere stone after stone

and it is hard
to fall in love with stone.

Just There

the carp hangs in the balance of its water
allowing itself to rise

the flautist – a Poulenc sonata –
careful not to force the breath beyond its register
as if the instrument was whispering in return
hold back hold back a little
and the music will come

between presence and intention

the faltering foal
a leaf about to fall
feather in the palm

thought drifting and untethered

noticing the mist for the first time
layering the dawn field
if I could

hold myself just there
for hope to arrive of itself

A child reaches out for the rain

collecting all the droplets
in his cupped palms

brimful of hope by this dismal path,
work that takes all afternoon

and when blackbirds announce the dusk
he would pour these tears
into his little purple bag

then shake them up.

He will be
my night’s magician
carrying carrying while I sleep.

The Strings

These bouts seem always to end in a room
with a slide of rain down windows
surrounded by grey and someone
close to being me again
struck by violin. This time
the G Major Sonata by Brahms
(last time Haydn) and being able – small things –
to listen. To hear
then a
curled up cat on this evening’s bed
a book, a breath, the radio
this same warm fall of tears and –
dear god or whatever, never again – the strings:
their twisting, near ache and rest.

If you liked these poems, there are more at http://www.futurepatientblog.com

All poems © 2018 David Gilbert