Life by someone else’s numbers

You are in Recovery, they told me when I last saw the Community Mental Health Team. This meant apparently that the only support I was going to be offered was access to a Work Adviser and even that never happened. Apparently at that session with a Psychiatrist and a Dual Diagnosis Worker I was not in need of any further help because, and I quote from the written report of the assessment, “she was fashionably dressed in a matching green top with neatly applied eye makeup”. Do they not GET after nearly two decades of using their services that I am able to put on a mask in even the most extremes of despair? How else would I manage to put one foot in front of the other?

mask

Less than a month later, I was admitted to hospital in a deeply suicidal state. I was “lucky” to have been admitted at all apparently as clearly I “had capacity” and therefore not a priority. I was about to be kicked out of A&E firmly intending to end my life after I had got my beloved cat Izzy to a safe place. If I had not bumped into a compassionate member of the psychiatric liaison team whom I trust on the way out of A&E, and told her my plans, I believe I would not be sitting here writing this blog.

I used to think I knew what Recovery meant. In the substance misuse world there are very many interpretations of this concept.

The National Council on Alcoholism and Drug Dependence in the US say this:

Essentially, recovery is a complex and dynamic process encompassing all the positive benefits to physical, mental and social health that can happen when people with an addiction to alcohol or drugs, or their family members, get the help they need.

The Substance Abuse and Mental Health Administration (SAMHSA) also in the US define it thus:

“A process of change through which an individual achieves abstinence and improved health, wellness and quality of life”

They expand this definition into 12 “Guiding Principles of Recovery”

There are many pathways to recovery.
Recovery is self-directed and empowering.
Recovery involves a personal recognition of the need for change and transformation.
Recovery is holistic.
Recovery has cultural dimensions.
Recovery exists on a continuum of improved health and wellness.
Recovery is supported by peers and allies.
Recovery emerges from hope and gratitude.
Recovery involves a process of healing and self-redefinition.
Recovery involves addressing discrimination and transcending shame and stigma.
Recovery involves (re)joining and (re)building a life in the community.
Recovery is a reality. It can, will, and does happen.

All pretty harmless stuff really but a lot of that is conspicuous by its absence in how Recovery is now viewed in Mental Health services here. I am happy to see my recovery from alcoholism as a process however. That way it guards against the complacency that could well set in if I suddenly get into my head that I am “recovered”. Alcoholism is a condition typified by denial.

And then the “model” was taken on in the mental health world. Initially, I was all for it. I was sick and tired of being railroaded into activities that professionals considered would be good for me. I was never ever going to enjoy playing bingo on wards even when they brought in cold KFC as a “treat” to go along with it. On discharge I was no way Jose, ever ever going to be into gardening for therapeutic purposes. In rehab I loathed with a vengeance being made to make a rag-rugged lavender cushion, and would far rather do my own art than paint by someone else’s numbers. This is my trouble. I have never painted within someone else’s numbers and cannot for the life of me stay within the lines….

putsidelines

This, it seemed to me, might truly allow me to define what my own sense of “quality of life” was. This was for me going to be having a safe and QUIET place to live and after that find ways to “recover” my rights to be an equal participant in society. Yes, I wanted to work but this would only be possible, as I discovered to my cost, if there was a stable foundation on which to build this form of self-actualisation.

Why do I say “to my cost”? Early after discharge from my first very long admission to a mental health ward I stumbled into a meeting of my local branch of Mind. It happened to be on the subject of employment and was addressed by Doctor Rachel Perkins, a leading proponent of the Recovery model and very much of the view that Recovery and Work are bound together. At this time, I was far from well. I could appear to have “capacity”. However, I was deeply traumatised by my experiences of workplace bullying and the total lack of support from my employer when on their watch, I descended into the whirlwind of PTSD and addiction. I had been a complete workaholic. I thought my job title was my entire identity. Work was a drug to me and ended up as destructive. I saw, and still struggle not to see, work as the only indicator of worth. Without it, I did not exist.

Dr Perkins was saying exactly what I wanted to hear. I pushed myself into service user involvement work and then a work placement with my mental health trust. However, I was going home every night to a totally chaotic house. I had been housed under a known crack den when what I needed was peace and safety. I had neither. I had to adapt to the addict above me’s crack cycle which meant he would be up for three days and nights, then pass out for three more days after which he would be off on a mission to get more drugs, and so it would go on. I was doing my placement in the local drug and alcohol service, in short working with people in the chaos of addiction then going home to try to survive in yet more chaos of addiction. Of course I became ill again. Of course it delayed my “recovery ” even more.

In fact for me, given the nature of my unbalanced relationship with work and my confusion of “work” with “worth” the ‘work as an outcome’ message rammed home by the Recoveristas was deeply damaging. Only now twenty years after diagnosis, do I finally realise that the past few months in which I have been reduced through physical illness on top of further work-related trauma, I have paradoxically been closer to “recovery” as defined in the above principles than I ever have.

The doctrine of Dr Perkins et al fails to recognise the importance of the base of the pyramid that is the Hierarchy of Needs. Propelled by the agenda of a government that sees the like of myself at best as “stock” or at worst as subhuman somehow wilfully avoiding “doing the right thing”, they went straight for “self-actualisation”as if this alone was enough. It makes me wonder how many of the leading proponent of the “work cure” have themselves experienced the devastation of having no safety from squalor, poverty and negation and the sheer impossibility of achieving “self actualisation” under these circumstances when life is reduced to mere survival and nothing more.

maslow

Housing – the missing link

I estimate that lack of safe housing delayed my recovery from a combination of post-traumatic stress disorder (PTSD) and related substance misuse by some fifteen years. It actually added layers of trauma. I was diagnosed after the death of my colleagues in the course of my job in international relations and in order to try to cope I self-medicated with alcohol. That in combination with an unsupportive working culture led to my retirement on ill-health grounds at the age of 32. I lost my home, as after sick pay came to an end I was unable to keep up mortgage payments.

I moved back in with my parents and with their support I appeared to be on the mend. I somehow succeeded in getting a job as Political Administrator to a Member of the European Parliament. Away from my family, I quickly disintegrated and starting on what became a dehumanising process in which what remained of my identity and my mental and physical health was shattered. Very soon I had no job, no home and was adrift in London. I managed somehow to get myself to my Borough Town Hall to declare myself homeless and they agreed to house me. I stepped that day onto a joyless merry-go-round that was to spin on for more than a decade.

Life for me became entirely about trying desperately to get help and find ways of getting my fragmented self safely across a sinkhole-ridden service landscape. My mental health and alcoholism were worsening and I became even more of a challenge to the system. I was too mad for Substance Misuse services, and too drunk for the Mental Health services. There seemed to be a chasm between Health and Social Services in Britain, with Housing seeming to exist in isolation on some other planet.

Over and over again, I appeared in hospital Accident and Emergency only to be patched up and packed off to another dingy room in some other bed and breakfast or hostel well away from where my support, such as it was, was situated. Every time I would be discharged back into these unsafe squalid places where my visible vulnerability led to me to be preyed upon leading to physical and sexual assault, and rape.

My response was to drink even more to cut myself off from my reality, and had I not done so I believe I would have taken my own life. The drinking would inevitably lead to yet another admission and a few days later another exit again back into oblivion.

I felt totally disconnected from the person I was before I became unwell, the person who ran international projects and was commended for her work in the Chernobyl zone. I knew she existed but was cryogenically suspended in another room in some other part of the building to which someone else with all the power had the key.

frozen

Turning points

I was eventually given a place in a supported housing project. For the first time in years I had a safe roof over my head. The organisation clearly understood the importance to their client group often battered into oblivion by mental health and substance misuse issues of an environment in which it might just be possible to regain some dignity and start to heal. I cried with joy that I actually had a kettle and a toaster. I recall my first night there. I was so unused to being in comfortable surroundings that I thought I might not be “allowed” to sit on my bed so I sat totally motionless on an armchair not quite believing I had the right to be there.

I felt devoid of any rights by this stage. I had been stripped down to nothing and re-labelled as “vulnerable”, “complex” and “hard to reach”. I absorbed and became what was written on my labels.

It was to be a long and hard process of pushing the rock up the hill from then on but at least the rock started coming to rest a little further up each time.

I recovered sufficiently to move on from Turning Point to a social housing tenancy. This brought with it a whole new range of problems. I was simply plonked in the nearest available space with no consideration for my mental health or precarious recovery from alcoholism in this case under a very well-known crack den. Under such conditions I stepped back again on the merry-go-round of relapse and hospital admissions during which every time “unsafe housing” was writ large on my notes. I have had seriously problems with the conditions in which I was expected to live. My place was so damp, I had mushrooms growing out of the ceiling causing me long-standing respiratory problems. I was subjected to extreme anti-social behaviour by neighbours to whom it had been divulged by a Housing Officer that I was “mental”.

It became so unsafe, after yet another relapse, I became trapped as a so-called “bed blocker” for just under a year at a cost per night of more than the Dorchester on an acute mental health ward. The police had deemed where I was living too dangerous. I could have told them that years before if I had ever been asked.

These days I finally have a home in which I can live safely.  It is far from perfect but I finally feel secure.

By rights, I could “recover” here. Healing does not seem like such an alien concept an in in fact I might even flourish. However….

DWP

Enter DWP Stage Left.

For whose Benefit?

These days the Recovery Model seems based a great deal on replacing terms with “positive” language. We are no longer subject to the mores of Mental Health Teams, they are Recovery or Wellbeing Teams now though in essence are exactly the same or indeed more difficult to access. We are told our labels to do not define us, that we are untapped resources, and that diagnoses must be cast by the wayside of the Yellow Brick Road to Recovery. We are taught to be resilient, regulate our emotions, and exercise radical acceptance even of the most unacceptable. We must be positive. We must be mindful. We must, we must, we must….

Buoyed up by all this positivity I now wake after a refreshing sleep in which I dreamt of unicorns and rainbows. Bluebirds lift my Egyptian cotton duvet from me and I rise in my lacy nightdress and get to my knees for my morning Mindfulness.

cinderella2

Then it happens….

There is a loud “THUNK” by the front door that can only mean one thing. Today’s post has contained a Benefits Form.

In one fell swoop all the fragile attempts at rebuilding a sense of worth crash to the ground.

For these forms it is necessary to clear away any vestige of positivity, and hope to God the professionals charged with providing the evidence you need are also able to make this shift. Then you have to describe in depth your worst days. I want to FORGET my worst days. I WANT to put them behind me but the system will NOT allow this. I hate to have to put in writing that I can’t manage to take care of my flat, and at times, I can’t summon the energy to have a wash. I HATE having to make sure I resist the urge to qualify any of it with something that might make me feel that bit better about myself.

And for the finale, there is the medical assessment itself. For that, you need to leave the mask behind. You MUST expose yourself in your raw and vulnerable reality to some under-qualified or unqualified stranger who has targets to make sure you are off their books for good. It is utterly humiliating, removes me from whatever sense of my own humanity I have been able to drag together, and it is designed to break people not build them up. I arrived at one with my Dual Diagnosis Worker. I was shaking with fear. The assessor commenced by barking “WHAT IS DUAL DIAGNOSIS?” and so I knew I was stuffed. The questions included a repeated demand to know why on earth I would want to leave my job in the House of Lords. He was genuinely incredulous. I had to tell him several times that it was not about whether I liked it there or not, it was the fact that I was too ill to make it out of bed at that time. He was fixated on whether I ate pot noodles. He wanted to know my preference of corner shops over supermarkets. He claimed to be a Doctor. I have no idea of what.

After this experience I felt so overwhelmed I howled like a wounded animal in the toilets of Balham Assessment Centre which has to be the grimmest venue they could find. Had the Dual Diagnosis Worker not been there, I may well have acted on my powerful impulse to end my life on the rail track.

vercliff

I firmly believe that left alone, I will gradually build myself up safely to make a return to work but it hangs on a knife-edge. Just one communication from the DWP has me fighting the impulse to start drinking to oblivion and punishing myself for the failure I have very clearly become. This process wrecks any prospect of real “Recovery” as I define it. It ends up costing way more as each time it causes me to relapse, and each time it falls to ever-dwindling services to help me glue the fragments together.

It is not about rebuilding. It not about recovery. It is about punishment, punishment from a system that assumes paid work is the only indicator of worth, the only indicator of one’s right to occupy a place in society.

At the time of writing, I am going through it all again this time due to the transfer of Disability Living Allowance to Personal Independence Payments. I was on an “indefinite” award of DLA which matters not one iota. I have been discharged from mental health services for no apparent reason so have no right to access supporting evidence from them. I am not sure my GP even knows who I am. Putting in my claim by phone was in itself soul-destroying – barked questions from what appeared to be some kind of automaton “Are you terminally ill meaning do you expect not to live for more than X months? Do you have Downs Syndrome? Do you have Dementia?” I sobbed all the way through it.

The reality is I may well not survive yet another round of this ritual humiliation. I feel battered and bruised by trying so hard to rebuild my life under this punitive system which is designed to foster hatred either from other towards myself as a “scrounger” or the self-loathing which comes from feeling as though my nose is being repeatedly shoved in the pile of excrement that I, in those moments, believe I have become.

mental-health

It is not easy to write this but this is the reality. Bodies like the Royal College of Psychiatrists need to hear this. They need to try to understand the realities of the gulf between the Land of Oz of Recovery, and the grim black and white reality so many of us face.

I know many doctors are burned out and when burnout happens, it is hard to access ones own humanity. I know as I have been there. It could be easy to fall into the trap therefore of joining in with the “scrounger” narrative around “fake patients” simply putting on an Oscar-winning performance to try to get something for nothing.

Have you have become so detached from your own Compassion, from the values that made you go into healthcare? Could I ask that before you judge someone before you who seems “well-presented” with “capacity”, and therefore you may consider,  likely a malingerer, why not pause for a second and contemplate the possibility that there is a person in pain and in need of help who is hiding for dear life behind a very well constructed mask without which they would simply dissolve on the floor.

If even then you still can’t see beyond your own biases, then think about the waste of resources as time and time again, people like myself end up so traumatised by the impact on top of poverty, of being graded and degraded that we end spinning out of control in the revolving door.

What do you do then? Do you sigh and write us off as “fakers” draining your energies and precious resources, or do you dare to look behind the mask and your own assumptions…? Why do we not all risk being our authentic selves and then we might understand the pressures you are under, and you will perhaps realise that when we appear in front of you, we may well be well-dressed and articulate, but may just be a person in pain who needs your help. 

.behind_the_mask_by_violins_and_violence-d3cnftx

First do no harm.

 

With thanks to Dr Wendy Burn, President of the Royal College of Psychiatrists for helping me find the motivation to write this blog. 

The section on housing is adapted from my chapter in a recently published book https://www.amazon.co.uk/Social-policy-first-Peter-Beresford/dp/1447332369. Thanks to Peter Beresford and Sarah Carr for inviting me to write about my Housing experiences. 

bookhousing

 

 

 

 

Faith in Vera – a tribute to a friend.

Who was Vera Rich?

vera5

Poet, translator, activist, eccentric, Learned Kissagram, or in the words of a senior member of the Moscow Patriarchate “that EVIL woman”?

My Granny called her “the One who Sings”. Vera had taken to calling her at random and singing her translation of the Bahdanovic Romance down the phone at her. She knew my Granda had died and wanted to help. THIS I suggest was Vera.

Venus new-risen above us appearing
Brings with her bright-shining memories of love;
Do you recall when I first met, my dear one,
Venus new-risen above?

From that time forth evermore, skyward gazing
Seeking that planet I’d scan heaven o’er,
Within me a deep silent love for you blazing,
From that time forth, evermore.

But the time of our parting draws near, ever nearer,
Thus does our fate, does our fortune appear.
Deeply, profoundly I love you, my dearest,
But the time of our parting draws near.

In that far country, my love buried deeply,
I shall live drearily, yet, high above
I shall gaze on that planet each night, vigil keeping,                                                                     In that far country, my love!                                                                                                                                                                                                                                                                           Gaze upon Venus once more, when far distant                                                                               One from another, there mingling we’ll pour                                                                                   Our glances, let love flower again for an instant…

Gaze upon Venus once more!

vera4

There is a lot of material online about Vera’s achievements as a poet and literary translator, but very little so far that captures what it was like to know her and be her friend. This blog is being written far later than it should have been but at last I have decided to describe impact on my life.

Snapshot from over ten years ago.

Vera had been ill for some time with breast cancer…..What was on my mind at that moment in my roller-coaster friendship with Vera, was not WHO she was, it was rather HOW she was, and then WHERE she was. Was she still alive? Had she survived the operation? If she hadn’t, I was going to have to start putting into place the wishes she had expressed to me regarding what she wanted to happen in such an instance. To summarise:

“If I am still alive but a vegetable, do switch me off before Elspeth and her Pro-lifers get near me. First, you must get a knife, not a fancy one, kitchen canteen will do, and put it in my hand. If not, I will not get to Valhalla”.

“Yes Vera”

“I want to be cremated as I don’t want the fuss. Give half to Ukraine and half to Belarus”.

“Yes, Vera”

I did not expect ever to have to put these plans into action. The day I found out she had died in her home with a copy of Under Milk Wood open beside her, my Dad had remarked “How’s Vera? I bet she’ll go on forever”. Sadly this was not to be.

However, though she had survived that operation only to die a year or so later, she was still giving me problems. I tried Barnet General furnishing them with the name Vera Rich, and giving her date of birth. After that produced no results, I tried other hospitals in London. No luck.

No-one had any trace of Vera Rich.

Where was she?

I sat for a while trying to think of a sensible course of action and in the end decided to go for something that should not in any rational universe, work. I randomly called the Belarus Embassy. She had had a chequered history there as did I, but generally, I felt they might have an eye on where Vera was and what she was up to.

“Hello. I know you probably can’t help but I am very worried about the poet/translator Vera Rich who is very ill, is meant to be in hospital and seems to have disappeared.”

“Ah yes, I don’t know personally but I know someone who does”.

At that I was put through to their First Secretary who said not only did he know where she was, he had seen her a couple of days earlier.

She was being looked after by the Belarusian community at the Church in Finchley.

I called, got her on the phone and after hearing about my adventures in tracing her she said:

I thought you KNEW. My name is NOT Vera, you Bumbaclot, it is FAITH but Slavs don’t have the “th” sound so I translated it into “faith” which of course, is Vera. And besides, you KNOW I don’t like to be found too easily. You never know who might be after me.”

How convenient that she also happened to live in Vera Avenue in Enfield. How very Vera for this to be so.

I was then regaled with tales of how she had fared in hospital. She had had a mastectomy as part of her cancer treatment. She was wearing the wig my mother had given her after her own cancer treatment had come to an end. It was remarked upon that Vera had not looked as well-kempt in years.

I have even managed to find online a photo of her wearing the wig in question.

vera-widescreen.jpg.w424.h.keepAspecty

She had sailed through the op, and while recovering on the ward, had a feeling that she was meant to BE somewhere. That somewhere was Bush House doing a BBC interview. She sneaked out of her hospital bed, put her coat on over her nightie and headed off in a mini-cab. She told the driver to circle Bush House while she did her interview. At this point he was stopped by the police as his behaviour and middle Eastern appearance had alerted people to suspicious goings on near the BBC. She sorted that out, got back in the cab and was driven back. She installed herself back in her hospital bed and I am not sure anyone even noticed.

Her creative input did not end in hospital. Here is one of the poems she wrote at that time:

Dear Friends…
Accept my gratitude
(Not to send thanks would be most rude!)
For flowers, sweets, get-well cards, cake, fruit,
(My locker-top’s awash with loot!)
But one gift, though most kindly meant,
Rather frustrates your good intent;
Though you were right; if I could choose,
There’s no gift I’d prefer to booze!
But having just lost my left breast
I’m told “Sobriety is best” –
Or rather (not to tell a “story”!)
The Doctor says it’s mandatory!
At least till they remove the “drain”,
I have to keep both gut and brain
Free of all fluids that can cheer!
Yet (Woe is me! Alas! Oh dear!)
So many gifts have come in bottle
To tempt the palate and the throttle
(If you’ll forgive that archaism
For ‘throat’)! If only through the prism
Of vodka, “single malt”, liqueur,
I could perceive the world, my cure
Would, I am sure, progress much faster…
But here the Doctor must be master –
And he proclaims they are taboo!
Well, what he says, I have to do!
But oh, the misery implied!
Consider this, I might have died
Under the knife, so surely he
Could allow one wee dram for me?
No, he will not! And furthermore,
There is no guarantee my store
Of booze will last till I can leave
And take it home! For (please believe!)
All the “kind souls” who visit me
Are so weighed down by sympathy
That (seeing me denied one sip)
THEY all take a substantial “nip”!

And another snapshot:

I had been at her 60th birthday celebration at the Bahdanovic museum in Minsk. It had been an odd visit. I was already very ill without knowing it with PTSD. I had ended up staying with the family of one of the Belarusian diplomats in London. This had not been a good move on my part given that I was expected to be driven around and escorted at all times, and a programme of approved meetings had been arranged to which I was expected to adhere. I don’t think they quite got the British thing of just ambling around people watching and they certainly did not think I would be IDLY ambling. They seemed convinced that I would be ambling with intent.

I did however manage to escape their grip and get to Vera’s “do”. I knew she was well-respected in Belarus for her translations of Belarusian poetry particularly the “three greats” Bahdanovic, Kolas, and Kupala. What I did not expect was the extent to which she  was revered. I arrived early at the museum but already several hundred had gathered arms full of flowers. I managed to squeeze in at the back. She was up at the front in one of her “good” frocks – ie it was just about holding together –  being serenaded by a young Belarusian “bard” with a guitar. He struck up the opening chord of “Romance”. Vera was off. She sang it in English in her slightly wavery but more or less in tune soprano.

Then absolutely spontaneously, the crowd sang it back to her in Belarusian. It is the ultimate in compliments that they considered her translation into English to be almost, if not entirely, equal to the quality of the original. This is where her genius lay. She was first and foremost a beautiful lyrical poet who had the ability to grasp all the mechanics of the languages in which she worked. Her translations were more than literal interpretations of words, they were poetic works in their own right, retaining not just the meaning of the original, but the feelings, the imagery and the music.

vera7

How it began:

How did this whirlwind of creativity and quirkiness end up in my life?

It was not long after the death of my colleagues in Belarus. I was still swept up in the swirling toxicity of the aftermath. I was trapped between the expectations of my employer that I would agree to promulgate a version of the truth that I could not stomach, aka lie, and my loyalties to the Belarusian “side” who were shouldering the blame but who were not to blame. I was trapped fighting daily the growing urge to tell the truth which would grow up with an acid-like intensity in my stomach, grow up my chest and get clogged burning a hole in my throat. To handle this, I was obliterating my feelings with alcohol and other forms of escapism such as disappearing from my office and spending more time than I should at the Embassy of Belarus.

It was the night of the Old New Year Party on 13th January. It proved to be a life-changing event for me in many ways. I met for the first time the stalwarts of the Anglo-Belarusian Society – people like myself who had been entranced in some way by Belarus without being able to understand why. It was the night I danced the polka with the Ambassador who later chased me down the corridor when I tried to leave at a “respectable” hour insisting “real Belarusians stay until the end”.

Earlier he had approached me and said “there is someone you MUST meet”.  I remember exactly where I was standing at this point in the corner by the window, my usual position at parties. Suddenly the crowd seemed to party & skipping towards me in black dancing pumps was this sparkly-eyed lady of a certain age in a black flouncy frock. I don’t remember much about what we talked about. I do know I was nearly flattened against the wall by the sheer force of her intellect, her personality, her sense of fun. at somewhere around midnight when the CDs had been brought out and Engelbert Humperdinck was crooning “Please Release me Let me Go”, appropriately as it turned out on numerous levels, that she had an asthma attack and took her leave.

However half an hour later, the door flung open and she pranced back in again having had a “second wind” of some kind in the taxi. She formed part of a hardcore group of survivors of Olympic-standard Belarusian hospitality sitting round a typical Belarusian table solving the worlds’ problems over yet more vodka and pickles until the early hours.

Daily life with Vera:

From then, she adopted me. I became a handbag carrier, the regular sounding board for her new poems and songs, and one of her Manifold Poets. I became the recipient of Vera’s legendary very early morning phone calls. I recall one at around 6 am when she asked:

“Have I GIVEN you my poem about Queen Victoria’s pain relief?” And without waiting to be asked she launched into it. Only Vera could rhyme Lithuania with “pain her”.

Victoria took marijuana
To dull arthritic pain
(So say the medical arcana
Of her imperial reign!)
And when the hair thinned on her pate
(Although this did not pain her)
She drank (to keep her crown on straight)
Birch-wine from Lithuania!

Sometimes she required more from me than listening to her latest opus. If the call opened with a harassed-sounding Vera demanding “what are you DOING today?” I knew I was in for something unexpected and more than likely bizarre. I ended up pretending to be a journalist writing a review for her of an exhibition about diamonds and heading for Kew to review an exhibition of glass sculptures. I accompanied her on multiple visits to Wetherspoon’s to which she was inexplicably devoted. She knew exactly when the Curry Nights and Pensioner Deals were on in every single branch in Greater London. One was doing a promotion of Ukrainian beer so she got me to ring them to arrange a photo shoot of herself sitting with a few pints. I had to pretend to be her PA. On one occasion, I was summoned to her chaotic house in Enfield. Vera was a hoarder and it was incredibly difficult to get her to part with anything despite many of us trying over the years. I was not given the nature of my mission. It turned out to be cutting down a bush in her garden. I was worried about my clothes but she had a solution. I was presented with a flouncy cocktail dress which had belonged to her mother.  I got stuck in with my secateurs dressed as though I was at a 1950s garden party. A Belarusian arrived with an axe. He started on the trees. He made us flower crowns. Vera drank wine and serenaded us throughout and then we finished with a bonfire and an Indian takeaway. Just an average day with Vera.

What she meant to me:

Only now she has gone do I fully realise the importance of Vera’s friendship. Those years were chaotic for me as I descended into the Hell of PTSD and addiction. Vera was one of the few constants. She did not judge. She was just there and accepted me no matter what state I might have been in. A few years after she died, a mutual friend said she had talked to her about me she had said “Alison will get well but it will take a long time. We all just need to be there for her until she does”.

I miss her.

I wish she could see what I have been able to achieve despite illness. She would have loved to have gatecrashed my presentations, and would have I am sure, convinced me to allow her some airtime to entertain with songs about the NHS. I can see her with the NHS Graduate Scheme whirling like a dervish round the ballroom in Leeds where we hold the Welcome Event every year.

She would have critiqued my writing and adopted any of my friends who showed a poetic bent.

She would have had things to say about our plans to publish a book of her translations of Belarusian poetry to coincide with the 10th anniversary of her death.

Verafinchley

I feel her presence a lot and it seems at times I get messages from her. Not long after her death, I was browsing in a charity shop in Notting Hill when a bookshelf collapsed above me. I was hit on the head by a book which I picked up. It was Vera’s collection of Belarusian poetry in translation “Like Water Like Fire” .

Likewater

Eternal Memory:

Some of her ashes are in accordance with her wishes near the grave of Shevchenko in Kaniv, Ukraine. The rest are interred in the wall of the beautiful wooden church in Finchley built for the Belarusian Greek Catholic congregation of which she was a devoted member. The spot is marked by a beautiful carving created in the Ukrainian city of Lviv, in her memory. She is portrayed as a Princess in a tower watching as St George dispatches the dragon. (She was born on St George’s Day). In fact, she would have taken on the dragon herself. She would have assaulted him with the full power of words, her poetry, her songs, her thoughts on all and sundry.  Mesmerised, the dragon would have slunk off defeated. She would have loved her place in the wall of the Church in Finchley.

plaque

She would have loved that some of her ashes brought her back to Ukraine to rest near the grave of their national poet Taras Shevchenko. This is truly a testament to the deep respect and love for her in Ukraine.

IMG_9322

Most of all, however, she would love the affection, and often humorous memories, her friends hold of her in our hearts. There were many obituaries and given how hard it is to sum up Vera, her life and work succinctly, this from Judith Vidal Hall from Index on Censorship is, I think, came closest to capturing her essence.

“But there was courage too; loyalty as well as determination. In many ways she had, more than many, outlived her Cold War era: she spent her youth battling the tyranny of the Soviet system; her maturity was spent caring for the victims of its residual legatees in Belarus. They will miss her, increasingly, for there will not be another like her. I shall miss her very particular brand of extreme eccentricity combined with humour and the touch of genius.”

And this genius in clear in this translation of the moving poem “Testament” by Shevchenko.

When I die, then make my grave 
High on an ancient mound,
In my own beloved Ukraine,
In steppeland without bound :
Whence one may see wide-skirted wheatland, 
Dnipro’s steep-cliffed shore,
There whence one may hear the blustering 
River wildly roar.

Till from Ukraine to the blue sea  
It bears in fierce endeavour
The blood of foemen — then I’ll leave 
Wheatland and hills forever:
Leave all behind, soar up until 
Before the throne of God 
I’ll make my prayer. 
For till that hour 
I shall know naught of God.

Make my grave there — and arise,
Sundering your chains,
Bless your freedom with the blood 
Of foemen’s evil veins!
Then in that great family,
A family new and free,
Do not forget, with good intent 
Speak quietly of me.

I will not forget, we will not forget, and we will never cease to talk quietly of her (and celebrate as loudly as we can) all that she was and did. 

 

Read more:

Obituaries

https://www.indexoncensorship.org/2010/01/obituary-vera-rich/

https://www.augb.co.uk/news-page.php?id=190

http://britishlibrary.typepad.co.uk/european/2016/04/vera-rich-in-memoriam-1936-2009-.html

Works

Translations and own poetry

https://allpoetry.com/Vera_Rich

Comprehensive bibliography including articles on Human Rights for various publications.

https://wikivividly.com/wiki/Vera_Rich

 

 

 

Hidden truths, unspoken lies.

speaknoevil

Last week the report into the needless deaths at Gosport Memorial Hospital was published. It revealed that at least 450 lives of patients admitted to this hospital were shortened ie in Plain English, people died, due to inappropriate prescribing of heavy-duty opiates. In a hard-hitting foreword to the report, the Chair of the Independent Inquiry the Rt Reverend James Jones uses terms sadly very familiar to harmed patients and families, and to those of us deemed “whistleblowers”, “troublemakers” and “vexatious complainers”. These include “obfuscation”, “closing of ranks”, “betrayal”, “powerless”, “anger”, and “frustration”. I have not experienced direct harm in the same way as these families, but being of the “speak truth to power” type, I am painfully aware of these terms.

What has come out has left me with a deeply unsettling feeling of deja vu and an equally intense foreboding for the future.

I have a reputation for a clearly reckless tendency to say when the Emperor is in a state of undress, and have not hesitated to do so in my sometimes life-draining experience of working as an “outsider inside”.  I have done so for years within the NHS and other healthcare organisations such as the Kings Fund who, despite being nominally “independent”, in fact tend to mirror exactly the culture about which they claim to be “thinktanking”. Perhaps therefore it is no surprise that I am burnt out, worn out and only starting to emerge over the side of the rusty skip onto which I have been chucked.

It came as something of a surprise therefore to be approached by two radio stations for my views on Gosport. I did not relish this and had to give some thought as to whether to agree. In the end, I decided that those of us who feel able to speak out, must use every opportunity to get our points across. As I am not directly affected by the outrage at Gosport, it is not easy to dismiss me as “angry brigade” which is what I know happened to the families raising concerns. I have seen this happen time and time again. People are unheard. People’s anger and frustration builds up, becomes embedded and in the absence of an outlet, can boil over leaving the person unable to trust anyone in authority at all. This plays right into the hands of those in the system as it becomes much easier to negate and shove in the “difficult patient/carer” box. And so the merry-go-round spins on…

stuckmerrygoround

And so I found myself being interviewed by Radio Scotland and by Julia Hartley-Brewer on Talk Radio with which I had not been familiar. Julia HB was all too familiar. It was going to be a challenge,  as our views on most things are at polar opposites.

I think I managed to get over my views but we were of course limited by time constraints so I decided it merited a blog. This is a complex issue that goes back decades and is about deeply ingrained cultural norms, attitudes and group-think. I will attempt to unravel my spaghetti-headed thoughts on the whole thing:

I am shocked at the scale of what the inquiry unearthed but sadly, not surprised. Both through being a long-term patient, and until I became ill again with work-related stress, a consultant to healthcare organisations, I have gained a wide perspective of the culture of the NHS. Despite the rhetoric, it remains a very defensive culture and I believe this defensiveness is due in no small part, to fear.

People genuinely are afraid to speak out and they are right to be, as those who blow the whistle often face dire consequences. Also in a target-driven, highly pressured culture where there is significant bullying in places, it has been demonstrated that even the most compassionate people get cut off from their own values. Mid Staffs was a case in point. Families who have experienced avoidable harm, in my experience, do not want revenge or massive lawsuits and compensation, they want accountability and the assurance that this will not happen to any other family in future. These families are a source of real insight into what needs to change and can be a huge part of the solution if allowed to be. Trouble is, they tend to be seen as a threat and stonewalled. This fundamentally has to change.

I have over the years experienced excellent care delivered by dedicated staff often doing so under extremely difficult circumstances. I do not wish to be seen as attacking the NHS. In fact I am devoted to the principles on which the NHS is founded. It “belongs to the people”. National NHS organisations hold it, ostensibly, in trust for us, the citizens. It is essential therefore that they hear us and work with us, and that means when things are going well, and crucially, when they are not.

It is the latter part of this that causes problems of course.

The culture of defensiveness – the taking to the bunkers in times of crisis, the unwillingness to “wash dirty linen” in public – goes back way before even the twenty years since concerns started to be expressed regarding Gosport.

python_run-away11

In 1959, psychoanalyst Isabel Menzies-Lyth published a study of systems in hospitals describing the culture there as a defence mechanism against the anxieties raised by caring for people in life and death situations. The study looked at the behaviour of nurses on a highly pressurised teaching ward. There is much in this study of relevance to the debate still ongoing about NHS culture. Menzies-Lyth found that:

1. Efforts were made to create a distance between nurses and the patients. Instead of nurses concentrating on one or two patients they were required to do different tasks for different patients. This ensured that close relationships could not form and kept patients at a “safe” distance.

2. There was a tendency to depersonalise, categorise, and deny the existence of the patient as an individual. Beds would be made in the same way, and patients fed at the same time. Hospitals were highly controlled and regulated which offered real opportunities to hide behind procedures when faced with intensely emotional situations.

3. Staff often denied their own emotions. A “good nurse” was seen as a nurse who would not get too attached to a patient. Physical detachment achieved by the regular movement of nurses from one ward to another supported this psychological detachment.

4. Procedures and rituals were used to minimise the need to make decisions deemed too stressful and which had the potential to generate fear due to uncertainty.

5. Responsibility and accountability was deflected

6. There was a level of “purposeful obscurity” where it was not clear who was responsible or accountable for what and to whom. This enabled responsibility to be applied in general terms rather than directed at one individual.

8. Staff avoided the impact of responsibility by delegation to superiors. “Tasks,” she “were frequently forced upwards in the hierarchy so that all responsibility for their performance could be disclaimed.” Nurses tended to carry out mostly tasks well below their individual capabilities.

9.  There was a tendency to avoid change. “Change,” she wrote, “is an excursion into the unknown.” Terrible consequences might follow. It was easier to hide behind “we’ve always done it this way”.

One quote from this work which resonates today given the experiences of the late Dr Kate Granger when she became a patient leading to the #HelloMyNameIs  campaign is:

“By allowing for ritual task performance by depersonalising relations with the patients, by using organisational hierarchies, nurses contain their anxiety. Thus a patient becomes “the kidney in bed 14” or “the tracheotomy in ward B”. In this way, nurses limit the anxiety they would experience if each patient were to be dealt with as a full human being in need.”

cutoffemotions

This report happens to be about nursing staff. I do not wish this to seem like an attack on nurses in particular. In fact in Gosport some nurses did try to alert management as to what was going on and got nowhere. However, others have acknowledged that they turned a blind eye and one is on record as saying she had no idea why she had done so. In truth, the tendencies referred to in the Menzies-Lyth study apply to any professional group working in an under-resourced, over-pressurised hierarchy particularly one subject to constant “reform”. It is little wonder that the constantly shifting sands contributed to the culture of fear which then manifested in the sort of behaviour observed by Menzies-Lyth.

workstress

I should know.

My career before diagnosis with PTSD was in exactly such an environment. I did not work in the NHS but in a local authority. We were subjected to constant restructuring, having to apply for our own jobs, and to interference by elected politicians who created conflict as what they demanded was often not the same as what the management required. This rather chaotic environment created fertile soil for the growth of petty dictators who were lauded for “getting things done” in the sense that Mussolini got trains running on time. The impact on the human beings who were being placed under intolerable pressure to meet the targets imposed from above was glossed over. Our Chief Executive was a bully with deep insecurities particularly around those of us he deemed “intellectual” or “academic”. He had good reason for his paranoia. He was exposed (by myself and a colleague as it so happened) for having falsified all of his qualifications. That came after our trade union had exposed him as a bully and chief perpetrator of an organisation-wide culture of fear. He was not sacked. He knew where bodies were buried.

I too put up with a lot of it and indeed did turn a blind eye to unacceptable things like Councillors fiddling expenses, as I was absolutely devoted to the people in the communities overseas with whom I worked. My doctor kept begging me to leave for the sake of my physical and mental health. I could not countenance that as I believed I WAS my job. Without that identity, I simply did not exist. So I carried on. It was a disaster waiting to happen. My colleagues were killed in Belarus in a rather scandalous episode the circumstances of which I was expected to cover up. I could not do that with something of this level. I took to alcohol to create the level of dissociation required to keep going. I see this a lot in the NHS. NHS staff are well-represented in the AA meetings which I now attend.

One day, I was sitting in a management meeting. I was asked a question about one of the communities with which I was working, as I recall, in Zimbabwe. I realised that at that moment, I had NO opinion. I had become frozen. I did not care one way or the other. I knew then that something profoundly wrong had happened to my personality. I knew deep down that I cared deeply but I had become completely distanced from my own humanity. I packed up my desk that day and did not go back.

fatigue

When I first heard about Mid Staffs I was horrified of course. I asked myself how on earth could staff become so detached from the values that made them go into healthcare, that they would walk past clear instances of neglect and abuse.

It was extremely uncomfortable to reflect later on, that in fact, I had gone through the same process myself. And if it could happen to me, it could happen to anyone.

This is not to say that staff should not be accountable. Absolutely they must. However, we need to look at those at the top who are NOT on the front line, not subject to the consequences of their own management styles, and ultimately, paid enough to shoulder accountability. The problem is that the upper echelons of the NHS contain more than their fair share of narcissists who lack insight, empathy, and have become so detached, so convinced of their own importance, that they profoundly will not believe this song is about them, to quote Carly Simon.

narcissistwork

There are good people at those levels too who have generally survived through being in that grey area of being neither too openly good, nor openly bad. Despite the sound-bites to the contrary which emanate from the Transformista Cult, they do not rock boats, and they do not draw too much attention to themselves either good or bad. They have drifted upwards, unfettered by too much scandal, or too much success. They KNOW very often that the unacceptable is going on, but seem unwilling or unable to do anything about it. There were some very good people from the upper ranks of the NHS on the Expert Advisory Group who endeavoured to advise Jeremy Hunt on the design of the new Healthcare Safety Investigation Branch. I was a member. I received more than one message from these highly-paid individuals saying that I was the only one with the guts to express openly what they were all thinking. It reminded me of when I spoke out about the bullying in my old organisation along with a few other courageous/foolhardy types. The majority of people told us they were fully “behind us”. What they meant was a considerable way behind us, behind a wall made of bomb-proof concrete.

survivalcentre

I was asked on Radio Scotland what I believe the solution is…not an easy ask in a ten minute interview.

Firstly, I am NOT an expert. I am an observer. The outsider/inside role with a range of healthcare organisations has however, given me a genuine “helicopter view” of the current landscape. I have given up on trying to change the mindsets of the narcissists  at the top which is a waste of effort, or inject courage somehow into the veins of the good people at the top so that they start to risk saying it like it is.

I prefer to concentrate on the leaders of the future. I am given some hope when I meet with the new intakes of the NHS Graduate Scheme every year on their first day. They are very bright, their minds are open to new ideas, and they have not (yet) been got at. I like to think I am able to plant some seeds that in some maybe, just maybe, that will enable them to grow into leaders with integrity and the courage to speak truth to power, leaders who are not afraid to torpedo the boat if necessary rather than just conference-hop loudly proclaiming their radical “boat rocking” credentials but not doing anything that might disrupt the status quo.

A few years ago I worked with my first intake of Graduate Scheme trainees. I had yet to be aware that I seemed to be able to influence through the manner in which I shared my experiences as a patient. There was a very overwhelming response to what I said from the new trainees. Some came up to tell me what had motivated them to want to work in NHS management, some became tearful as they had only just realised the enormity of what they were doing and the potential to impact on the lives of ordinary people.

One trainee sent me an email during her first placement. She on her first ever night shift in A&E. She wrote:

“I just want you to know that I am remembering what you said in every patient that I see”.

This is why I choose to lay my painful experiences bare over and over again in the hope that in some small way I can make a difference. I must believe that it will. It is what makes me drag myself off the floor and somehow carry on.

The other key part of any solution will of course be a radical change in the way patients and families are perceived in the system. We are NOT the enemy. We are more than capable of understanding the reasons for errors, that human beings are fallible, and that staff are very often burnt out and drained. The tendency to retreat to the bunkers as soon as the shit heads towards the fan is doing NO-ONE any favours. I am painfully familiar now with the shut-down that happens when a failure or short-coming is exposed. Despite the fact that we would deeply respect professionals prepared to say “I got this wrong” and look at how to work different, very often the response is to batten down the hatches and we are met with a Berlin Wall of silence.

No wonder then, in a system so divided and divisive, we can be forced into Them and Us tribes.  Instead we need to be able to meet in the no-mans-land between the opposing armies as genuine partners, each with a deep understanding of what it is to walk in the shoes of the other.  This means that we must be present where the real power lies, at governance levels. We should not be limited to token patient story at the start of a board meeting, but as an equal member of the board itself.

Until this happens, we will continue to repeat the same mistakes. The NHS can’t afford this and neither can the citizens – the patients and families who stand to lose a great deal if, and indeed when, another Mid Staffs, another Southern Health, another Morecambe Bay, another Gosport hits the front pages.

Are you an NHS Leader hiding until it’s all over, or do you have the guts to free yourself and your subordinates from the merry-go-round?

merrygoround