All’s well on the Potemkin Ward.

It has been a challenging week and no, not just for me. I was admitted to Chelsea and Westminster Hospital due to what I assumed were new developments in the pain around the fibroid which will require major surgery. I was admitted as the lactate levels in my blood were of real concern and these were caused by convulsions.

To manage my epilepsy, I was told I must avoid stress.

Then I get a double-whammy of communiques from the DWP requiring me to prove to them that I am not just a lying wastrel by presumably having a fit and being doubly incontinent right in front of them otherwise I will tick the “perfectly well” box.

How pray tell, does one avoid stress under these conditions? If you know, please let me know.

I started the process of trying, with help, to fill in the lengthy and largely irrelevant form. I don’t remember much about that day. I know my pain levels increased to level ten on the one to ten scale and I know that by Monday I was having fit after fit. I think I counted seven.

What I now know is I also had a fit on the Friday during the process of filling in the form. The scary thing is I remember nothing about that. Nothing. I usually get an aura which gives me a window to get myself in the recovery position but this time nothing. My brain clearly decided to shut me down as the stress would short-circuit me altogether.

In A&E I was told “you are very unwell (I am sure that is a euphemism for you are about to peg out) and have to be sent up to a ward”.

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In A&E a psych liaison not working with me as for once I was deemed not to need one, made me a cup of tea so good that I said he must have been Scottish in a previous life. Then the delightful B appeared on the scene. She is another RMN & had realised I was in A&E. She is a force of nature. She dresses in a style I would call Afro-Eclectic. It was on this occasion a full length purple Nigerian dress over sparkly leggings and sequined trainers. The current hairstyle is 70s Afro. I love this woman. She is wise and does not hold back in terms of giving me a stern talking to. She has sat with me on suicide watch so often. She took time to sit with me and chat about anything and everything.

She actually made me laugh.

I had wanted to die.

This one nurse made me laugh enough to want to live, and it was not even her job to take care of me.

After that I got transferred to the Acute Assessment Unit in the part of it they call “trollies”. They are not trollies but I think it is just to be seen as a sort of transit centre – the Staten Island of Chelsea and Westminster.

There I found myself helping out a woman with dementia who could only speak French. The staff knew the boundaries but it helped to have me shout from the opposite bed “she is saying she has peed herself”. An enterprising and utterly magnificent Irish nurse was using Google translate so getting it horribly wrong which again gave me something to laugh about. I told her later she was totally getting through to the lady not because of Google but because she was a natural communicator.

From there I was moved precisely one bay along to where the “trollies” (which are in fact beds) officially become “beds” (which are exactly the same as the trollies). I do hope you are following this, dear reader. I spent the night there, or rather what was left of it. The trouble around all these moves, is that they create more opportunities for gaps in processes. Information from A&E had already gone astray by the time I got to be a “trolly dolly”. There were further errors after the move 50 metres away to the “non-trollies”. I had to be so on the ball about what had been said and agreed. I had had seven seizures, my brain was not in great shape but I can’t help think of those who for example had dementia or those whose first language was not English for example.

Early next morning, I was told I was to be moved to an actual ward.

As usual in the bed-hopping process, information had disappeared down chasms never to be seen again. This mean that I had to spend a night with no pain relief at all as the Buprenorphine patches which I was told would be prescribed were in fact not prescribed. That was one very long night. I did not sleep at all.

The next night was also rather long. There was it seemed, only one nurse on duty who was not even from our ward, to cover at least 17 beds which meant doing medication and trying her best to keep an eye on vulnerable patients many of whom had dementia. This is one of the specialisations of the ward I was on. And of course she quite rightly had to have a break leaving us basically on our own. One lady was very distressed and kept getting out of bed and heading off down the corridor. She was unsteady but, boy, she moved with purpose.

How can it be safe to have one member of staff trying to concentrate on dispensing meds in the middle of a ward where chaos was only ever a hair’s breadth away? Could this be why errors happen? (Rhetorical question).

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That is when we patients and one carer sitting with her critically ill mother stepped in. We patients monitored the movements of this lady and guided her back to bed whenever she took off, which was frequently.

By morning it felt as though we had done a night shift ourselves.

It was then staff started to confide in me about staff shortages. I believe one or two of them follow me on Twitter so they saw me as an ally.  I got so incensed about what they were telling me, I tweeted the new Secretary of State Matt Hancock. It was about 4am. Little did I know he was in the building at that time on a massive PR exercise as illustrated by his photo the next day with a crowd of smiley staff – at least six times more of them than we had on duty. He needed to be where the reality is not in PR land.

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One of the doctors told me another doctor had binned the happy clappy script and given the SoS some home truths, funnily enough saying exactly the same things I was saying in my Tweets about staffing levels. He had the guts to say what they were likely all thinking. Have his comments and courage been met with the gratitude they deserve? Somehow, I doubt it. As for you, Secretary of State, I hope you enjoyed your night with us, but please be aware that elsewhere in the very same hospital patients were having to provide patient safety as the sole nurse had had to take a break. Yes, digital is the future or at least a vital part of it, but if and only if the basics have been addressed.

The results on our ward were staff on short fuses though doing their very best, staff running from task to task, staff with no time to talk to patients, to comfort them, to reassure them – all sorts of things that used to define the caring professions. And as for errors? When plates are constantly spinning with only one person trying to keep them in the air, they are going to start smashing on the floor. Only these are not plates, these are people, and in that, I include the staff themselves. I saw a number of talented young HCAs and nurses running on passion and adrenaline alone. I know to my cost where that takes you.

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As for me, I got through what was a terrible week thanks to my Twitter family and my ward family. I also got by by being useful. I bonded with a lovely Moroccan lady who understood French so again I found myself helping out with the communication. She understood me anyway. Her daughter helped translate some of her observations of me. This 90-something felt I needed to be kinder to myself. She also said I had a big heart. She pointed to her own heart, then pointed at me after I stepped in to sort out the utter balls up around her discharge. I loved her too. I wish I could have known more about her life. I bet a lot of staff wish they could do the same, but how on earth can they even get as far as “Hello my name is” under these circumstances?

Let’s pause a moment to talk about discharge. Surely this should be a seamless process given that information about discharge date is generally available a couple of days in advance. This lovely lady was told she was going home, which she was desperate to do, at 6pm. By six she was already in her outside clothes, clutching her belongings in her hospital issue plastic bag. Her face was wreathed in smiles as she waited finally to go back to her own bed. Her daughter who had been interpreting, had gone to her home ahead of her to make sure it was all ready for her.

Then she waited some more.

Then more.

At no point did anyone try to talk to the lady.

After she waited in bed in her outdoor clothes for three hours I had had enough as I could see she was getting visibly distressed. I was told all was in hand as the daughter was on the phone etc.

We waited some more.

By this time, the old lady was so distressed, I was distressed to look at her as was the retired NHS employee in the next bed. Thankfully there was a change of shift and two total stars came on duty – one HCA who oozed common sense, and a nurse, a real nurse. They told me the truth. I always appreciate that. I can work with that no matter how bad it is. It turned out that a fax had been sent to transport who claimed not to have received it. Two things come to mind. One, why on earth is the NHS still using faxes when according to the new SoS we won’t even need to go into hospital, we will send in our Avatar instead? Secondly, did anyone read the fax report that would show whether it had been received? We were now 4 hours on and the poor lady was still lying there in tears, not understanding a word any well-meaning member of staff tried to tell her. She had only Arabic and basic French.

I was by this time being treated as some de facto carer though up to my eyeballs on Oramorph and in my PJs. I was asked to assure her in French the transport would be there in 90 minutes. I decided to make it two hours as I had an odd feeling about NHS timescales already.

She was happy enough with that. Then, ten minutes later – I think by now we were five hours after the time she was told she was going home – I was asked to translate that there was…err…a new development. There WAS transport but…it was in Peckham. I took an executive decision at this stage to suggest we explain to her that there was no transport for that night so if she had a good sleep, we could make sure she got home early in the morning. My neighbour asked me to tell her she was safe as she was among friends, meaning the other patients.

She then of course needed help to get back into a nightie, her bed tidied and basically given some TLC. I tried and failed to get any staff to do this as they were already hassling to arrange the transport for the next morning. The other patients arranged it. The two staff on shift were not responsible, they had been handled a massive comedy of errors by the shift before which consisted of one HCA with zero common sense and an agency nurse who had never been there before.

Once our lovely friend settled down to sleep I was so strung out I went out for a walk round the deserted hospital. In the end I went right outside to the Tesco over the road and bought donuts. It was after 11pm.

Next morning eventually transport came. I helped her back on with her cardigan and we patients stood to wave her off on her stretcher. She waved all the way along the corridor and did not let go of my hand until she reached the outside door to the ward. Tears were streaming down my face by this time.

There are a number of issues here but a major one is whether there is ANY effective communication between transport and the hospital proper.

Also, there was a distinct feeling that between the group of six patients, we had more skills of use than the original team present. There was a carer, one retired NHS employee who had 30 years experience, and there was my ability to communicate in whatever language that gets thrown at me.

But I was not there as a roving troubleshooter, though time and time again that is what I become, I was there as I was in great need myself:

Often I sat on my bed in tears. I was desperate for a kind ear. I was in a lot of pain so much so I was on Oramorph. I was sick to the core with fear over the DWP. I found my bank account had had some fraudulent activity go on which meant I had been cleaned out. Finally I had a perfunctory email from the Royal College of Psychiatrists advising me that “on this occasion I had been unsuccessful” blah blah, for a role on which I had set my heart. I could have made a real difference in terms of giving me a purpose and some peace of mind, and it played exactly to my strengths. After getting the news, it seemed at that point I did not even have any strengths. I felt like a punch bag. I recalled Orwell’s metaphor of a boot stamping on a face forever.

But no-one had time to talk to me, and as I didn’t want to upset my ward mates, I did most of my crying in the loo.

One spate of crying appeared at the same time as lunch. I sobbed into my Korma. Once again, I felt I wanted to die, but there was no-one to tell. They just do not have the time. I am not saying they don’t care. They care deeply. Why else would they turn up every day or night for more of the same? Are they being given the chance to use the skills in real caring and compassion, the values that made them enter the profession? Of course they are not. This is about plate-spinning.

If you enter Chelsea and Westminster Hospital you will think you are in a rather nice, if a tad over-the-top, hotel. There is a beautiful art collection, a luxury cinema, an indoor palm tree garden, opera regularly in the atrium, numerous dining choices and occasionally, should one be so inclined, one might purchase a cashmere pashmina from Johnston’s of Elgin or a new set of pearls.

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Until such time as these systemic issues i.e. the gaps in processes that lead to time-consuming games of Chinese Whispers, and adequate staffing levels are in place this showcase hospital will remain nothing more than a Potemkin’s Village. For the benefit of Mr Hancock, a Potemkin Village is defined as follows:

A pretentiously showy or imposing façade intended to mask or divert attention from an embarrassing or shabby fact or condition. Prince Potemkin, favourite of Catherine II of Russia, allegedly had villages of cardboard constructed for her visits round the country so she would not see the reality behind the facade.

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Where were you Mr Hancock the other night when you allegedly did a night shift? A real ward, on an average night in an over-stretched under-resourced hospital despite its glitzy facade, or on the Potemkin Ward where it looks all shiny but in reality, is a flat-pack illusion hastily put together for the occasion by the PR department?

Time will tell….

 

 

 

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?

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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….

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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.

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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.

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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….

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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.

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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 Lord. 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.

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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.

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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. 

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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. 

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Hidden truths, unspoken lies.

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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…

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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.

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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.”

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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.

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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.

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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.

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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.

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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?

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Reflections of a Burnt Out Revolutionary

I write from my room in a mental health unit. After many years of bleeding my often harrowing experiences in the health, social care and housing services all over the walls of conference halls and training rooms I find myself depleted of resources both physical, mental, and spiritual. I feel my skin has been sandpapered off very very slowly until finally I am left with my organs barely held together with a wafer-thin membrane. I was very close to taking my life last week. I do not say this lightly.

Why did I bother to give 100% of my mind and soul to trying to improve the culture of our NHS? You may well ask. In truth, it is now twenty years since I was diagnosed with PTSD and ended up homeless and hopeless, as described in other blogs. Using my experiences in the hope that no-one else ends up there has never been a “job” for me. I have had a single-minded and utterly sincere belief in the adage that the truth shall set us free.

I was prepared to traumatise myself over and over like the proverbial boot stamping on a face forever, if one, just one, person might go on to work differently as a result of what I told them.

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I fought hard against the commodification of qualities like Empathy and Compassion and the dilution and co-option of concepts in which I firmly believe, such as Patient Leadership and Co-production.

It is only now in hindsight, sitting on a ward after a serious bout of suicidal despair at being next to destitute despite all that I have given particularly to the NHS, that I realise I was commoditised and co-opted myself. In return for what I hoped would lead to a level of security ie a “real” job, I allowed NHS England to silence me to some extent, to dilute what I believe and what I have to say. That failed of course, and I now meet the consequences.

I am far from out of the woods regarding my health and the spectre of homelessness is always present. I am tired on what feels like a cellular level, let down and heartbroken.

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For this reason, I have decided to blog my thoughts on these issues now. I am not sure whether I will get through this particularly dark patch and there are things I do not wish left unsaid..

There are words galore on the subject of involving patients/families/citizens. We are an “untapped resource”. There is a “power shift”.  We are being “put” at the centre.

Simon Stevens, at the time of writing Head of NHS England, wrote this in the Five Year Forward View:

More broadly, we need to engage with communities and citizens in new ways, involving them directly in decisions about the future of health and care services”.

“None of these initiatives and commitments by themselves will be the difference between success and failure over the next five years. But collectively and cumulatively they and others like them will help shift power to patients and citizens, strengthen communities, improve health and wellbeing, and—as a by-product—help moderate rising demands on the NHS”.

Fine words, but is this revolutionary, new or even at all meaningful?

Discussion on the changing relationship between patients and the health and care system has been going on since before I was born. In 1964 journalist Gerda Cohen wrote in What’s Wrong with Hospitals “patients are becoming impatient of being treated like chipped flowerpots in for repair”.

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Even more tellingly, she wrote extensively in this book, about her observations of a psychiatric ward. In those days of course long-term, if not permanent, admissions were the norm. I very often use this quote from the book in my presentations:

“Self government by the patients must involve pretence because as soon as they encroach on real power, they are brought up short”.

Again, remember this was in 1964 and my feeling is apart from in some isolated cases, this remains true today.

At the time Cohen was making her observations known and for some considerable time afterwards the Medical Model prevailed and to a large extent still does albeit with a veneer that might suggest otherwise. In the Medical Model, the healthcare professional is the expert in control and the patient is there to be ‘fixed’ like that broken flowerpot. Interactions tend to be one way with the health care professional telling us what needs to be done. The focus is on diagnostic labels and finding a box in which to slot the “problem”.

So many of us have more than one health issue going on at once funnily enough. Right now for example, an extended period of extreme work-related stress has led to depression, anxiety, a recurrence of my childhood epilepsy with grand mal seizures, chronic back and leg pain and the discovery while all of this was being investigated of a large growth in my uterus. I am unable to work and so poverty and sheer terror at the possibility of being unable to sustain myself and my cat has further added to the mental health symptoms. I am at separate clinics for each of these issues. I found out that the Pain Clinic was unable, on discovering the growth, to refer me directly to Gynaecology in the same hospital but it all had to go through my GP. The GP surgery could not refer me without seeing me. I was however by this time an inpatient in hospital in another part of town due to bed shortages in my own area. I have had to wait to be transferred back to my Borough, feel well enough to go to the GP surgery in order to set in motion the referral back to the same hospital. That process when I eventually dragged myself to the GP, took roughly two minutes. I was also advised that the Pain Management clinic had no ability to liaise directly with my mental health team. Surely the two issues are linked and impact on one another?

Don’t talk to me about “integrated” or “coordinated” care. These are fine words once again, but the reality of my current experience is very different. Each symptom is treated individually by different healthcare professionals working in separate silos with little or no collaboration with those in other departments.

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Who has the genuine “helicopter view” over this fragmented, landmine-strewn landscape? The patients and their families of course. We have to find ways to negotiate our way through the maze when we are often at our most vulnerable. We patients know to our cost that this narrow, fragmented approach is at best frustrating, at worst actively damaging. Many never make it out of the maze. I sense their spirits are still trapped there, desperately trying to find the way to the centre or to the exit.

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And despite all our efforts, those of us passionate or mad enough to push for real change for no personal reward, largely remain recipients of “care” rather than truly equal partners.

This is certainly true in Mental Health. My current experience involves being ignored, negated and not even worthy of being asked directly what my name is. Despite standing right next to a nurse, she leaned across to a colleague, stabbed her pen in my direction and said “what is HER name?”. I already feel like an utter failure for ending up here again.. This sort of thing may seem minor but makes me feel subhuman. It feels like a different planet to the world I occupied when I had a contract with NHS Horizons when we blithered endlessly about rocking boats, being pirates, not following rules etc ad nauseum. Let me take you by the hand, Chief Transformation Officer, and I will lead you to the front line of an acute mental health ward….

Patients have not taken this paternalistic attitude lying down. Already in the 1960s, at individual and collective levels, patients were starting to demand more control over their own treatment and have a genuine influence in the development of the services which they used.  The first patient groups were forming and the notion of the patient as something other than a passive recipient of care began to emerge.

Largely this development seemed to have been welcomed but with some trepidation. In a debate on “Hospital and Patient Welfare” in the House of Commons in 1964, the MP for Abertillery the Rt Hon Rev Llewellyn Williams despite declaring himself suspicious of the new patient organisations as a potential refuge for “chronic bellyachers”, he does however go on to state:

What concerns me is the question of human relationships. This is the nub of the matter. In the post-war period we have witnessed incredible medical technological advances. Surgical skill seems to go from one new wonderful discovery to greater discovery still. We have discovered drugs which are indeed miracle-working. One would wish that there were a comparable advance in human relationships”

Policy since then has gradually seen the reframing at least in terms of rhetoric of the role of the relationship between the patient and the wider healthcare system – from the NHS and Community Care Act of 1990 where the formal requirement to engage and consult was first established to more recent Policy such as the Berwick Review which recommended that:

“Patients and their carers should be present, powerful and involved at all levels of healthcare organisations from wards to the boards of Trusts”.

Once again, fine words indeed…and there’s an endless stream of them it would seem.

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Here’s an example from Think Tank Land. In its 2014 paper on Collective Leadership for example, the Kings Fund recommends:

Organisations such as the centre for Patient Leadership also stress the importance of seeing patient leaders as a resource for change in health and social care organisations. Much like multidisciplinary team-working, collective leadership with patients would require a redistribution of power and decision-making along with a shift in thinking about who is included in the collective leadership community”.

All well and good, but having been an Associate at the Kings Fund, my observation is that behind the glossy facade there festers a culture that is as hierarchical, and toxic as the worst parts of the NHS. There IS no “collective leadership community” there. This is a nice soundbite to describe a fantasy world.

Formal policy leaves us in no doubt that we are “putting the patient at the centre”. This statement in itself is riddled with power imbalance. “We” ie the professionals, on “our” ie the professionals’, terms, will “put” the patient at the centre. When I hear that, I see myself as a pawn being placed on a chess board by some giant in a suit. I am never the Queen, just the pawn.

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Traditional Patient and Public Involvement, still largely based on collection of data and feedback, and at best having a token pawn or two on a Committee, more often than not, stops short of sharing power at strategic levels. Advances in digital technology and Social Media have already changed fundamentally the nature of how we patients interact with the health and care system and outdated systems for formal Patient and Public Involvement are falling more and more behind the pace of change.

As it states in the Five Year Forward View:

“We have not fully harnessed the renewable energy represented by patients and communities”.

There are yet more fine words which do not stand up to close scrutiny. The energy of patients and carers is not infinitely renewable. We are a finite resource that that risks depletion through ineffective, wasteful and tokenistic use.  Simply repeating declarations that we need to involve patients and carers in new ways with no indication of how this is to happen, in a glossy policy document or declared loudly from the platform of a glitzy conference, is not enough. I have waited for real action in this for years now. My head is bashed out of shape from its frequent collisions with brick walls. I am not sure I wish to continue to water dead flowers.

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The words of the Reverend Llewellyn Williams from 1964 ring equally true today with the added urgency from the NHS increasingly struggling to do more with a great deal less. Relationships remain at the heart of the matter, and the key to fostering sustainable working relationships is collaborative and partnership working in which power is genuinely shared at all levels including and in indeed, in particular, at Board level where the strategic decisions are made.  

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But where are we at Board level? By that, I mean having equal say in decisions, not just a “patient story” as the after lunch “inspirational” slot to wake everyone up after too much corporate buffet.

There is a smattering of Patient Director posts pioneered by courageous trailblazers like David Gilbert, but that is about it in terms of having an equal say in decisions at the most senior levels. This is a wasted opportunity. It limits vision.

Why do they fear our presence at these levels? Is it that they themselves have Imposter Syndrome? Is it simply that they have fought tooth and nail with much fur flying to get hold of power and are mighty unwilling to cede any of it especially God forbid, to a patient?  

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One Trust clearly fears patients to the extent that their CEO had the bright idea of having a red chair in the Board Room to remind people of the importance of “the patient”. These invisible patients are ideal. They are guaranteed not to cause trouble or ask any awkward questions. It struck me there may be a market for flatpack patients to cover all engagement needs. There could be supplements for the so-called “hard to reach” and a Premium service that would also take into account the need for diversity.

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Where does the much misunderstood term “Co-production” fit into this? Co-production is often considered a synonym for patient/service user involvement. The reason for this is that the system tends to co-opt and dilute more radical concepts in order perhaps to be able to slot them into existing structures which can SOUND radical but in fact be rendered “safe”,  and less challenging than the business of actually transforming existing structures and systems.

In The Challenge of Co-production, the New Economics Foundation defines it as follows:

“Co-production means delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change” 

The key words are “equal” “reciprocal” and “agents of change”. It is not a synonym for public engagement, service user/patient involvement or consultation. It is not just allowing people a say in decisions about themselves individually or collectively, and above all it is not something which retains power in the hands of professionals with the patient or service user brought in at a later stage. Do you believe you are “doing” co-production? If so can you honestly say that it sits on the two way street of reciprocity, that there is true equality, and the patients/carers/citizens involved are truly able to effect change on their terms?

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The term Co-production was first coined by Nobel Prize laureate Elinor Ostrom at Indiana University. The key finding in her work in the criminal justice system in Chicago was that public services were shown to work best when designed and run by a combination of professional expertise and community insight. Ostrom’s work divides participation into individual and collective levels.  This is very relevant to health care. We can participate as individuals in terms of how we reclaiming power over our own health and in sharing decisions with professionals, but we can also link up with others either with similar issues or set of values to participate on a wider level in order to create the social movement that is mentioned in the Five Year Forward view.

Co-production was taken further by Professor Edgar Cahn, a US civil rights lawyer and speechwriter for Robert Kennedy, who suffered a massive coronary at 45. Time spent pondering in his hospital bed upon the resulting apparent loss of self and achievements before he was ill. He used this time well as he went on to found the Time Banking movement – the practical means whereby those declared useless by society for whatever reason are now valued for their assets, skills and life experience.

I read his seminal work “No More Throwaway People” and it immediately resonated, particularly regarding the feeling that his heart attack seemed to rob him of more than just his health.

“I didn’t like feeling useless. My idea of who I was – the “me” that I valued – was someone who could be special for others, who could do something they needed. And here I was, a passive recipient of everyone else’s help” (Cahn, 2000)

I have long observed that the power-holders can far more readily accept the idea of patients as individuals “taking responsibility” for their own health wrapped up in the pretty gift wrap of “self-management” but not quite so keen on the idea of collective influence, of strength in numbers, of a genuine social movement that is as social movements should be – inspired, mobilised, developed and led by the citizens themselves. Social Movements are just “FAB” as long as they are run by the officially endorsed Tranformistas, bureaucratised and stripped of any energy, fire and challenge which might just run the risk of the Bastille actually being stormed.

Cahn describes himself as a Hellraiser, and as such co-production has a major hellraising element. He described me as a Hellraiser when I was lucky enough to meet him. I take this to mean the definition of an Activist by Eve Ensler.

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We are out there, both inside and outside the NHS. Despite its claims to the contrary the NHS remains firmly based on Command and Control. The culture I have noted from my time working within national NHS bodies, is the antithesis of that advocated by Ensler, Cahn and countless others. There is a deep-seated fear of genuine activism that might just shake up the status quo and every effort is made to create pseudo-activists by such initiatives as the School for Healthcare Radicals. Real radicals do not need to be taught. Real radicals do not need a badge to proclaim themselves rebels. Real radicals who really do rock boats in their drive to challenge injustice and “make it better” run the risk of ending up like me – burnt out, chewed up and thrown on a corporate slagheap.

I will conclude this reflective piece with the words of Edgar Cahn, a man who would run a mile from wearing an “I am a radical” badge. His actions speak louder than empty words.

“We will be unable to create the core economy of the future so long as we live in a bifurcated world where all social problems are relegated either to paid professionals or to volunteers whose role is typically restricted to functioning as free labour within the silos of the non-profit world.

It will take massive labour of all kinds by all to build the core economy of the future – an economy based on relationships and mutuality, on trust and engagement, on speaking and listening and caring – and above all on authentic respect. We will not get there simply by expanding an entitlement system that apportions public benefits based on negatives and deficiencies: what one lacks, what disability one has, what misfortune one has suffered….Finally, because time banking and co-production grow out of my life and work in the civil rights movement, I have to add that hell-raising is a critical part of co-production and of the labour that it entails and must value. Those with wealth, power, authority and credentials hold those assets as stewards for those who came before and in trust for those yet unborn.” 

 

As for me. Was it worth it? Right now, I just do not know the answer….

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Sent to Coventry – an outsider inside reflects.

I will never forget the day I arrived in Coventry for what I assumed was a standard induction into my new freelance role as Transformation Fellow within the NHS England Horizons team.

I had not done regular paid work for 17 years having had to retire on ill-health grounds after being diagnosed with PTSD.  I had met Helen Bevan whose work I admired, at a social event. Within days after that I was contacted by members of her team offering me a position of one day per week. I was overjoyed. I felt a much-needed sense of worth return. The two colleagues with whom I spoke sounded really lovely. One in particular really understood about PTSD. I felt confident therefore that I could do this work safely and successfully.

It was arranged that I go to Coventry ostensibly to spend the day with the Helen. I assumed I would be shown round, introduced to the team and then have a practical discussion as to expectations on both sides and that there would be a conversation about support needs.

This could not have been further from what actually happened. I did not even have time to get my coat off and I was hurriedly shoved into a packed meeting room and all I could hear was Helen’s voice barking out instructions from what I now know is a spider phone. I can’t remember what they were talking about but she demanded my opinion. I was too freaked out at this stage to have an opinion on anything.

After that I was introduced to the ritual humiliation of the Monday morning Huddle. It was dressed up in terms of group hugs and ra ra cheerleading except the pom poms were bedraggled and they sought to mask that this was rather more an assassination squad than Madonna hugging her entourage before going on stage. I had NO idea what was happening. Helen was still in the ether virtually as though Big Sister was watching us. It was clear no-one knew why I was there and by this stage, neither did I.

I noticed already that the team responded to everything Helen said with clearly forced enthusiasm. Even the most hair-brained ideas were responded to by shouts of “love love love Helen” “awesome!” And the ubiquitous “FAB!”. However what she couldn’t see being in absentia, were their grimaces, the rolled eyes and the body language which screamed out “NO!”. These were early warning signs that I wish I had heeded but I was so determined to work again, to be part of a team, to be a worker among workers, a friend among friends.

It was clear also that my sudden arrival out of nowhere was causing distrust amongst the staff. They viewed me as this “friend of Helen” – a cat suddenly leaping from above among the pigeons. One was brave enough to approach me to say people did not know if they could trust me, whether I was some kind of plant ready to inform on them. I assured them I barely knew the woman but that the only way they were going to trust me was by them seeing me in action and realising hopefully that no, I was not a personal pal of the Great One and that no, running to her with tittle-tattle was not my style at all.

As for the Great Leader herself I finally got to ask her what she actually wanted me to do for this quite substantial daily fee. The response?

“I want you to sprinkle fairy dust on my work”.

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That’s clear then.

She then was perfectly frank in saying she wanted my network. She had a tendency to bring on board people with large social media following or popular blogs. It was almost as if whatever else we did was immaterial as long as our social media stats somehow bolstered HER ego (which did not require bolstering).

There was no discussion regarding likely support needs.

The day felt like being sucked into a toxic vortex, whirled around until I was incapacitated with vertigo then spat out again. I tottered out of there not quite sure what had just hit me.

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I had a chat with my coach after the visit. He asked if I had negotiated my fee, got clarity around the role and what was expected of me. No, basically, was the answer to all of that. I know I spent a large part of the day in tears as I was so overwhelmed. I just hoped that as time went on, things might become clearer.

The saving grace was the majority of the members of the team who were and are a lovely bunch. It is a pity they are not allowed to meet their full potential a lot of the time. It would seem there is a lot of brittleness at the top levels of the NHS and it does no good to draw attention to oneself either negatively or positively. The best thing is to achieve a faceless mediocrity and that way one can silently climb the ranks unnoticed.

I found the language used very odd. I had of course been out of the workforce for a very long time and suddenly I found myself immersed in Transformation-speak. My first experience before I started work there formally was a so-called “Thought Diversity Hot House”. I had misgivings already about this. It sounded a bit too much like Hot Tub for my liking and I was not ready to get in a tub with the majority of people there who included Simon Stevens. Some things are beyond even me.

This was a very shouty event. It was clearly meant to achieve a sort of Jerry Springer does Transformation tone. When I got there, there were feathers and felt tip pens on the table. I could see that it bode ill.

I withstood the Billy Graham rally tone until the last session before lunch. I was at a table of particularly serious clinicians. Our task, shouted at us, was to create something that might represent what we thought the NHS would look like in ten years time. My table commenced serious discussion on Quality Indicators and policy matters. I felt sure the whole thing was aimed at getting us revved up before lunch so in fact there was no actual serious purpose to the session. My suspicions were further confirmed when I glanced over at the next table who were busily making dogs out of balloons. At this point, I made a mental promise that if anyone at all started doing interpretive dance, I would not be seen for dust.

The teams started to feed back their “creations”. One lot plugged in a phone and so it began….music started and they began clapping and swaying. At this point I shot out the door along with a few other introverts. I was so shaken I ended up mainlining carbs at Carluccios in Waterloo once again with that “what just hit me?” feeling. It seemed like the entire leadership of the NHS were in that room and they were making dogs out of balloons and dancing like embarrassing uncles at weddings.

Interpretive dance

It was SO familiar. As I downed my pasta I realised what it was. I was LIVING in W1A which was not fiction at all. It was a documentary of this team and what they seemed seriously to believe was the answer to the issues faced by the NHS. “I know, let’s make things out of feathers, pipe cleaners and hard boiled eggs. That’ll sort it”

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I know for sure I would not have coped in the realm of the Director of Better had it not been for my colleague Carol. We shared the same sense of humour and boy, did we need it.

On one occasion we were supposed to be mounting a takeover of Skipton House. Now a proper, spontaneous invasion in the style of the storming of the Bastille with the Great One being airlifted onto the roof by helicopter I could have handled, but this was of course stage-managed and to this day, I have no idea what it was meant to achieve. I know I had to join in a group photo holding up a cardboard lightbulb and expected to shout FAB! or some other over-excited infant-style yelp. I was very near the ear of Simon Stevens who was also holding up a cardboard lightbulb. I managed to whisper “what fresh Hell is this” in said ear just to reassure him we were not all doing acid during working hours.

Soon though I settled into actual work which involved writing up summaries of articles for the online publication “the Edge”. One stipulation was that we were not to write anything negative. This made it challenging when given drivel to summarise. I recall a video I had to review which featured an earnest Swede talking about Intersectionality with reference to the Kebab Pizza which had become popular in Sweden after the Turks took over the Italian pizza restaurants in Stockholm and lo and behold the resulting pizza became really popular with the Swedes. He then went on to talk about the Burqini which had been designed for Moslem women but ended up popular with Australians keen to avoid sunburn.

Now I could clearly see how relevant all this was to hard-pressed NHS staff, so decided to give it considerable thought. On a visit to my Dad up in Morayshire, I discovered the Scottish equivalent of the kebab pizza – the Haggis and Brie Panini. I took a photo of it and put it in the article. This was probably my most successful piece of writing. This says a lot. I was taking the piss. No-one noticed.

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One of the highlights was Change Day before it became FAB. I was deputised to be part of the entourage for the Great Leader and we had a TV crew in tow. We spent the day making sheer nuisances of ourselves in Kingston Hospital. We even invaded a board meeting with no warning and certain assumptions were made that everyone would know who we were. My role that day was handbag carrier. I decided to get on with it and realised I was the highest paid porter in the NHS.

In the absence, how inconvenient, of a baby being born so that the Leader could be filmed with it, she decided instead to start feeding older patients, donned a plastic apron and started almost forcing food down old ladies’ throats who were clearly managing rather well on their own and had no idea just who this strange woman in the plastic apron was.

It was bizarre and it was certainly NOT about patients. It was showbiz and it HAD to be a one woman show or there would be Hell to pay.

I don’t want to give the impression it was all negative. It was not. I had some wonderful experiences which were actually meaningless in terms of value to the NHS and general public, but fun for us nonetheless.

Take for example the 24-hour Transformathon. This was apparently “making history”. I think perhaps it should have read “making hysteria”. I co-hosted with the Leader and made sure we divided the sessions between us ensuring that anything high-profile went to Helen. Staff were worried about her insistence on doing all 24 hours. They had one member of staff who was very experienced in television and was concerned that the quality would be affected if the two hosts did not take a break at some point. Helen was insistent on doing the entire 24 hours. I was approached by senior members of her team begging me to challenge her. They described me as their “secret weapon” as none of them felt able to challenge her in any way. I used a technique whereby I talked about myself. “Helen, I will be taking a few hours off as I have listened to the experts who feel the quality will be affected and the event is NOT about me”. I did not think I was being at all subtle but it still did not permeate at all. I realised that we were dealing with a deep lack of insight.

I know the team were disappointed that this was again a one woman show with me as a sidekick and that their own considerable talents were being as usual under-utilised. Helen herself was so wound up at one point she snapped her fingers in my face. I realised out of the two of us I was the calm one and that is saying something. As I write I can feel how surreal that whole thing was. Did anything actually change as a result of what we did? Did it justify what it cost? You know, I have to say, I seriously doubt it.

By this time I had a contract arranged via Capita which was ostensibly to arrange training and development which is NOT what I was actually doing. I had to go through an arcane procurement process including answering questions as to whether I was providing polystyrene cups for my attendees at my non-existent training courses. I had to assure Capita that I had checked the passports of all my imaginary friends working with me on the courses. It made me distinctly uneasy particularly as I had sight of an email between Helen and team making clear that Capita were renowned for not paying people on time and expressing concern that I might say something about this publicly. This work was my only regular income and I regularly was left without any payment for months on end. This took its toll on my health as I had no means of paying bills and was defaulting on rent. I had already been homeless and I knew I would not survive that experience for a second time. I started to become very unwell physically and mentally due to the relentless pressure and uncertainty.

I had numerous admissions to the mental health unit from which I continued to work. At one point I was so physically ill as I could not afford to eat, that I ended up in a high dependency unit in Chelsea and Westminster Hospital. I remember tottering into the corridor hanging onto my drip stand making a call to Capita’s Polish call centre begging them to pay me. They had taken six months to do so. I was down to my last £10.

I would regularly return from Coventry so shattered I could not physically move from my front door to my sofa. I would sit on the floor by the front door until I mustered the strength to move the ten feet or so to my front room.

My contract was ended without my being told and I was instructed not to do any further work for this team. However, Helen insisted I continue as we were in the middle of a big project so for a time I was working long days, way longer than that for which I was contracted, with no idea whether I would be paid at all.

Was this a team where there was any degree of genuine psychological safety? No it certainly was not. I saw one colleague reduced to suicidal despair and they would often confide in me as they knew I understood.

Other colleagues talked about undergoing a profound personality change. Previously extroverted people found themselves turning inwards and becoming introverted. I will never forget a dearly respected colleague being taken down by the Leader. I believe her crime was to be too good at her work and was rightly being recognised for this. This made her a threat.

I would stress again this was not a psychologically safe culture for anyone never mind those of us with vulnerabilities due to health conditions.

There are many forms of bullying as I well know. This was gaslighting. This led to people either becoming Flying Monkeys and emulating the toxic behaviour, or starting to doubt themselves, to withdraw, to be afraid, ironically, to rock the boat.

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I am still suffering the consequences of this now.  I have felt so corroded by this experience that I have been declared by my medical team as unfit for work for the time being. I most certainly will not be so naively trusting in future when it comes to NHS national bodies. I was very nearly destroyed by this whole experience.

This is NOT meant as a personal attack. It is meant to illustrate that yes, patient and carer Leaders, or whatever you wish to call us, can add immense value to your work. However, for many if not all of us this is NOT merely a job. We cannot just leave it behind at the end of the working day. It requires us accessing and even reliving often highly traumatic experiences over and over in the hope that it leads to change and to improvement. It needs handling with extreme care.

It is NOT acceptable to employ us on a whim or even a hunch that is a right one. It requires a lot of consideration, a lot of clarity around expectations and absolutely vitally, it requires systems in place that enable timely payment at proper consultancy rates for consultancy level work. It is essential that conversations around support needs take place early on e.g what happens if we become unwell while at work? There must be due regard for Reasonable Adjustments in accordance with the law. I prefer to arrange my own travel for example as I get very anxious otherwise so I need to retain control over how I get from A to B. This was NOT permitted by this team despite the fact that by arranging my own travel, it would have SAVED the NHS a lot of money. In the end I covered all my own costs simply to ensure I could arrive at my destination in one piece.

I had a deep yearning to belong to the team as an equal. Because there was such a lack of clarity around why I was there, it was hard I believe for the team to see me as a colleague. I found missing out on some of the rituals that signify belonging really hard. I was asked to come to Coventry for a meeting. When I got there, at my own expense as usual, it was clear they had forgotten I was coming. The entire team went for afternoon tea to Helen’s home and I was left in the office. It was an isolating and surreal experience. Sometimes I was invited in on discussions, sometimes I was not. None of this was deliberate on the part of the team members but there needed to have been a lot more work done on clarifying exactly what my position was. I felt “othered” on a regular basis.

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Simon Stevens in the Five Year Forward View refers to us as “Renewable Energy”. In fact this is only true if due regard is given to the fact that we may bring with us all sorts of issues with which we may need support if we are to remain safe and give our best.

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I do not feel renewable, I feel expendable. I write after nearly losing my life in resus just over a week ago. The prolonged stress has re-activated my childhood epilepsy. My Consultant Neurologist believes this is due to the unbearable pressures exerted on me during my time with NHS England.

My motive in writing is that I want to make sure no-one else goes through what I did. This team was doing the right thing but went about it in the entirely the wrong way. As for me, I need to be far more business-like, less grateful for being asked, and take with a large pinch of salt any verbal promises made. Until such time as they are in writing, they must remain in the land of rainbows and unicorns which is how I came to see this team – well-meaning, dominated by the overwhelming personality of the Red Queen and occupying a realm that bore very little resemblance to reality.

I am at a crossroads now where I have to decide whether I can continue to work in healthcare. The toll this has taken on me has been massive. Thanks to Chelsea and Westminster Hospital I am here to tell the tale but I very nearly wasn’t.

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Twilight Zone II. Maelstrom of mayhem.

I remained in darkness for some time. Through being in hospital, I was now at least “in the system” which meant that I was parcelled around from B&B to hostel to therapeutic community and back again. These places were so dangerous, so frightening that I carried on drinking so once again, I could keep reality at bay.

There were moments of clarity when I wanted to get help. The trouble is the health and care services were so fragmented, there was never anyone around to respond when I was ready and time after time, the moment passed and I sunk back into the mire again.

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No matter how good a service may or may not have been, there was little or no joined up working. I was too drunk for the mental health services, and too mad for the substance misuse services. I was still in very unsafe housing. This was time and time again the trigger for further decline in my health. The routine would be that I would drink until my body could take no more. I would for example have a fit in the street, or be found unconscious, and be taken to A&E. I would then be patched up medically and exited once more back out into oblivion. Of course, I was going to end up back there. No-one was helping me break the chain. It was a self-perpetuating Myth of Sisyphus and even if they could have held the rock for me for a while, it might have helped.

Sisyphus

This could end up very repetitive, as it was repetitive. It was a macabre Groundhog Day that further drained me of any connection to humanity including inside myself. By this time I thought nothing of stealing to get what I needed. It was a means to an end.

Some snapshots that have stuck in my mind that will hopefully get over the impossibility of getting well under the circumstances I was in:

In a mental health hostel in North Kensington run by the Royal Borough of Kensington and Chelsea, had a room in the basement.  In the middle of the night, a man climbed through my window. I had been drinking brandy so was not too bothered. He advised me not to worry, he was a drug dealer and was just doing his job which in this case was selling drugs to the residents in the hostel. I gave him a brandy. He told me his name. Then off he went up into the main part of the hostel where the particularly unwell people lived. At this point my public spiritedness took over and I went next door to where I knew there was an on call “waking night” social worker. She appeared at the door. I told her what was happening. Her response?                                                                                                                                                                                                                                         “I am only here for emergencies, don’t bother me with this”.                                                                                                                                                                                                                  Also in that hostel, I was, as one does, minding my own business on the toilet. I suddenly found myself a foot lower than I had been. The floor had caved in. Once again, this was a hostel for people with Severe and Enduring Mental Health issues run by the Royal Borough of Kensington and Chelsea Social Services Department.

After yet again being thrown out of a Therapeutic Community for continuing to drink, I found myself in the Homeless Persons’ Unit with all my belongings in a black bin bag.        I officially had a Social Worker. Information should have been available to the HPU due to my vulnerable state however, this Social Worker was conspicuous by her absence during this period. I was in a very dire “walking dead” state and yet, was packed off in a taxi to a room in what turned out to be an illegally converted property in Tottenham. At this time with such support that I had being in Kensington and Chelsea, and given the state of my mental and physical health, I might as well have been sent to Mars.                                                                                                                                                                                       There, I was so visibly vulnerable, I was preyed on by a highly suspicious character, an Iraqi, who was connected to the landlord and had a very nice flat in the otherwise derelict building. One day he dragged me into his flat and I was raped. I had a moment of clarity at this point. I remembered advice from the Foreign Office that I had been given in my old life about finding myself sexually assaulted in an Arabic-speaking country. There was a phrase they advised women to say which might give them some space to have a chance to escape. How I remembered it I will never know. It was Ramadan. I shamed him in front of Allah. He pulled away and I ran for the door having the presence of mind to grab some dodgy looking leaflets in Arabic on the way.

I ran to a phone box right outside White Hart Lane stadium and called the police. I was taken to the Rape Unit in Wood Green. It was remarked what an excellent witness I was. In truth, I did not care one iota about any of it. I relayed information like an automaton. I didn’t want it to happen to anyone else. In the end I didn’t press charges. I knew I would not withstand a trial and I knew they would make mincemeat of me in court. He was released and I had to go on living in the same building as him.  I was too dead inside to care.

However, that did not last long. We were raided by Home Office officials in the middle of the night. They were after the lovely Ismail, a Turkish Kurd who had been tortured. I would hear him screaming in the night. He was represented by the Victims of Torture charity. He trusted me. He wouldn’t come to the door unless I helped him so I found myself the go between, in the corridor in my PJs, between him and the Home Office. He eventually agreed to go with them. I took the opportunity to fill the Home Office people in on some details. I told them Ismail appeared genuine and they should contact the Victims of Torture charity. I told them that it was not him they should be after but the other guy. I told them he was living under an assumed name and then told them his real name. There was a reaction. Then I gave them the Islamic Fundamentalist leaflets that I had grabbed. All I know is, the next day, he was gone.

I am amazed at how survival instinct occasionally stepped in and I showed strength that I absolutely had no idea I had.

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To counter balance this horror, there were lighter moments too:

In the Social Services Hostel, I managed extended periods of stability. Three of us were in a basement flat – a Malaysian woman with very severe OCD, and a traumatised Ethiopian girl Tutu. I loved Tutu. She had no idea at all how to live in the UK. Everything was so mysterious to her it was actually rather lovely. On 5th November, she thought a revolution was happening because of all the fireworks going off. I noticed she was stockpiling blocks of butter. It turned out she was putting it on her hair. She was incredibly polite and I got to know all her Ethiopian friends. I helped her with her English and she would cook me VERY hot Ethiopian stew and watch me eat it while blasting out Ethiopian jazz from her CD player. I ate all of it despite it making me feel like my head was on fire. Tutu was actually showing me that against all the odds, I could still be useful to another human being. I could still merit my place on the planet.

There were other angels along the way. In one B&B where I was particularly isolated, a local GP brought me a food parcel which he had paid for himself. The refugee I mentioned above would appear at my door with plates of Turkish food. He had nothing but he was giving all he could to me.

There had to be a breakthrough and thank God it did come. It came in the form of a Junior Doctor, a Senior House Officer, from University College Hospital. I had been scraped off the street yet again and somehow ended up coming through their A&E. I am pretty sure I was being very obnoxious to him.

First, he described me perfectly accurately as a “Maelstrom of Mayhem”. I recall replying, once again showing the extent to which I took refuge, even then, in intellect “That’s wonderfully alliterative”. And then, crucially, he said

“You should try AA as it’s a spiritual programme”. 

He also gave me the details of a substance misuse drop in service in Earls Court.

I most likely told him where he could stick it, but actually he, without either of us knowing it had planted a seed. I wish I could meet him again. He saved my life that day and does not know it.

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A couple of weeks later, I was tottering towards the Off Licence from my room in a B&B just off Kensington High Street. I was hanging on lampposts as the nerve damage had affected my mobility. I knew at the end of the row of lampposts was a source of vodka so I was a woman with a mission. It was around 9am on a Saturday morning. I got as far as St Bartholomew’s Church and there on the fence was hanging a dark blue sign with AA on it.

I diverted from my mission, and tottered down the stairs.

This was my very first AA meeting. I am hazy on the details. I know I thought they were all a bit odd. I knew that the “Chair”, ie the speaker telling his story, was a film director and I was shocked that he swore a lot. They paused at one point and asked if there were any newcomers present. Dutiful to the last, I thought that meant I HAD to speak. I followed what the others had done and said

Hello, I am Alison and I am an alcoholic.

At this moment there was a slight lightening of the load weighing me down. It was nothing spectacular but I felt something lift. I now know that that something was Hope. Hope had been absent from my life for a very long time.

Hope

 

 

 

 

 

 

 

One of the people who remembers me from that first meeting is a nurse. She has since told me she doubted that I would make it. She honestly believed I might well not be alive by the time of the next meeting.

I had, it seems, found what I needed only just in time. That week, I turned up at the drop-in service which the junior doctor had told me about. Before long, I was on my way to detox at a private hospital in Marylebone and they sent a taxi to collect such belongings I had. They told me I would never have to live in a dangerous place like that again.

There was a huge ladder to climb but at least I could now see the ladder.

 

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The twilight zone. Part one.

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Where am I? I know that is not my ceiling above me. Is it dark because it’s morning or late at night?

Who is this man next to me?                                                                  

I can’t take the onrush of fear. I need more alcohol.  I see he is unconscious and he seems to have only one leg. This should make it easier to escape.

I need more alcohol. The plan of action is first of all get some alcohol somehow. Then and only then can I quell the shakes in order to move to the next stage. 

I accomplished the first stage via a three-quarter full bottle of vodka located in the corner on the bedroom. There was a stench of stale urine, poverty and desperation. As I finally get myself out of the front door, I hear him shouting what sounds like a military ID. He must have been a soldier….. 

Any one of these episodes should have counted as a “rock bottom” by anyone’s standards. Some of us however, stay at rock bottom for an extended period, bumping along the seabed occasionally trying to gasp for air. The problem was I fundamentally believed I deserved this half-life I had created. I never felt good enough and running through my head on repeat was a litany of “if I can’t be good enough, I will be SO bad, I will be off the scale altogether.

I was now fully adrift and under the radar from support in London. At this stage alcohol in some senses saved my life. I only survived,I believe, by having an artificial cushion between myself and reality. I am convinced had the enormity of my current reality, that I was truly alone and spiralling out of control, in a dangerous, dark underworld sunk in,  then I would have taken my life.

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The details are for obvious reasons and rather thankfully, somewhat hazy. If I try now to delve into what was going through my mind during this period, I only have a sense of desperation to ensure that as little as possible of my reality actually entered my consciousness. For that, I needed industrial quantities of alcohol. If I couldn’t find enough through the other Twilight Zone dwellers, I would steal it. I certainly found a whole skill set I never knew I had. I could still manage to put on a façade of sorts. If I got caught, they always let me off as a hormonal middle class lady. I didn’t fit the stereotype. I remember one of the street dwellers saying “here I am looking like scum, and you still manage to look like a millionaire’s daughter”. He was called Jim. He played the guitar. He’s dead now. AS far as I am aware they all are.

They were not all bad. There was a mutual support going on in that group of Throwaway People. They could see I was not used to that world. I know a group of them tried to keep me safe. They even donated from their cash meant for gut rot cider to buy me a plate of French onion soup from the café in Holland Park. One of them had been a published historian. He had a breakdown after the death of his wife, lost his home and ended up on the streets. His former publisher would arrive every so often with food parcels. By this time, the poor man feared being housed more than anything else. He would not have been able to handle it, he said.

It was a very dark period. There is one period of several months of which I remember nothing. I had been well enough to go for a Christmas lunch at a monastery with my then only friend, the poet and translator Vera Rich in whose landfill site of a home, I would take refuge from time to time. She drank like a fish too so the whole set up suited me. It was safe however and she never ever judged me. The next thing I knew I was coming round in a hospital ward. I was for the first time in my life completely psychotic. I remember it in detail. I felt euphoric.

Psychadelic

I was advising a crowd of medics and nurses looking at me aghast that I was immortal, that I was waiting for angels to take me back to my planet. I was getting messages from my planet transmitted through my very smart winter hat like a satellite dish of sorts. I was very worried that these unknown “enemies” were after me to kill me but as I was immortal this was ok. At this stage I could see the actually stationary medical equipment above me moving. I KNEW it was THEM. They were going to shoot me. It was time for me to be public-spirited:

“Could I ask you all to stand out-of-the-way?. I am about to be shot but as I am immortal that is ok. However you are NOT immortal so please stand aside as I don’t want your death on my conscience”.

I remember nothing more of that night. In the morning I was no longer psychotic. A consultant arrived and asked me if I remembered what I had been saying the night before. I assured him I could remember it all and had no idea at all where it had come from.

Soon it became clear where it had come from. I was in a lot of pain. On examination, they discovered I had stab wounds in my inner thighs and one wound which looks like an incision of my appendix. It isn’t. It’s a knife wound. The wounds were infected with MRSA and I had an extremely high temperature which had caused the delirium.

Two things really frightened me. One, that I had been stabbed and recalled nothing whatsoever about it and still don’t. The other was that I had caught sight of the date on a newspaper. It was over a month later than my last lucid memory. I had blanked out the end of December and all of January.

All I know is that when I searched my bag, I found a business card of an African pastor. He had written a note on the back saying that he had found me in Archway. I had no connection with Archway. He had called me an ambulance and got me to Whittington Hospital. This was only one of a number of real life angels who seemed to appear at the very moment I needed them most.

angel window

An additional part of the mystery is that there was no alcohol in my system. I believe I must have been preyed on while in a visibly vulnerable state and something beyond traumatic had been inflicted on me and culminated in my being stabbed. I believe my already deeply traumatised brain simply shut down and so nothing registered.

The only sensation I have is of being held somewhere against my will. Vera told me I phoned her. I said “I don’t know where I am, and I don’t know who these people are” before the line went dead. The truth is, I don’t want to know the details of what happened except that I am lucky to be alive.

Was this luck or evidence of a Higher Power? I am not sure. All I know is there were a number of occasions where I could so easily have lost my life. And yet I am still here. Many are not nearly so fortunate.

HP

Why do I do what I do? Why do I retraumatise myself by talking about these experiences in the hope that SOMETHING might be learned? This is why. I need to find a purpose for all of this. 

After an extended period of isolation in hospital, I was sent to a hospital in Ealing. Then a bed became available in South Kensington and Chelsea mental health unit. I had been approved for Housing in that Borough so was by this time in temporary housing from which I kept getting thrown out as I just could not cope independently at this stage. Temporary housing and hostels are not the safest of places and I was assaulted several times during this period.

When I was taken to Chelsea, I was deemed No Fixed Abode as I was between rooms in B&Bs or hostels. This meant I was admitted for an extended period to an acute ward until a plan could be put together to bring me some stability. I still did not stop drinking. I used to leave the ward to stock up on supplies which I smuggled into the ward very easily. The thing was I was officially in there for “PTSD” so as long as my drinking did not cause any Serious Untoward Incidents thereby causing a lot of paperwork, a blind eye was turned. There were a number of people labelled “alcohol dependent” on the ward who were monitored for alcohol use. They just used to visit me, as they knew I would have supplies. There were two AA meetings weekly in the main hospital and another in a church hall opposite the hospital. Did it ever occur to the staff that even one of us might have been helped there? No. I doubt they even knew that this free source of source was right on their doorstep.

However something was starting to change. I was now relatively safe. I say relatively, as a number of my fellow patients would get violent on a regular basis. I no longer required to drink to oblivion 24/7.

I was on a dormitory with five other women with a range of mental illnesses. In one of the moments of clarity I had started to experience, I decided that I had a choice. I could go under given where I now found myself, or I could learn from the experience. I chose the latter.

beacon

I was finding out new things about myself. I realised that I was not afraid of being around people with even the most distressing symptoms.

I seemed to be able to communicate with my dorm mates better than the staff at times. Opposite me was Gloria. Gloria had dementia. The only thing she said was a repeated request for help as she was convinced she had rabies. I used to go across to her and just chat. One day, she sat up and said as clearly as can be

“I’d like to go for a walk”.

I told her I’d have to ask the staff. I think they said something like “Gloria can’t even sit up”. However they said IF Gloria got up and dressed, by all means we could go for a walk. They clearly didn’t think this would happen.

Their faces as a smartly dressed Gloria and myself strolled past the Nurses’ Office arm in arm were a picture. We had a lovely stroll. She told me about her life. She had been a seamstress at the original John Lewis. We went down the Fulham Road and back up the Kings Road and back to the ward through the back gate. I was able to tell her son that his mother had come back to us for a time. He said he had not had such a gift in years. We were both in tears. She drifted off into her own world again but she seemed at peace. I knew she trusted me. The staff were mystified “how did you get her to do that?”. In fact they were no bothering to interact with Gloria. She needed human connection and so did I. We helped one another.

I started managing to laugh again. How could I fail to when we had “incidents” such as Jeremy taking all his clothes of at South Kensington station and strolling up Fulham Road singing “Mad Dogs and Englishmen” and very well too?

I was having to relearn things like having a wash in the morning and sleeping during the night like everyone else. I was aware that I had once had abilities, talents even, but had the sense that they were cryogenically suspended in another room to which I had not been given the key.

I was, without knowing it, in the very early stages of emerging from the darkness. There was a lot more darkness to come as the system there ostensibly to help me was ridden with gaps through which I fell many times.

At least however it was no longer pitch black round the clock.

I was still in the gutter, but just occasionally I had brief glimpses of the stars.

Gutter

 

 

 

 

Alison in Blunderland.

When I arrived fresh out of university to start my new job in a local authority it was before the advent of technology. We had a typing pool and I was allocated one which would be responsible for deciphering my handwritten scrawl. I would get it in my In Tray, correct it, send it back and this process could go on for some days on a loop. I however of course had to type in Russian myself so I was instructed in the various processes involved.

I was told I had to make two copies. On one I had to hand-write the word PINK. I asked why. They said “how else will we know which one is the pink one?”. I felt myself disappear down the rabbit hole. In my naivety I then said “but it’s not pink”. She adopted the manner of someone trying to explain an iPhone to an elderly aunt. “Well, pink disnae photocopy”. That’s clear then. I tottered back to my office wondering when the Queen was about to shout “Off With Her Head”.

Off with her head

Then I discovered the obsession with grades. We had an Admin Officer who knew everyone’s grades and referred to people accordingly. “Well I heard that 5-8, say to that 9-11” etc etc. As a PO 5-8 I was advised I was in the elite and therefore had the right to a swipe card to the Water Door. I fantasised about what this was – some sort of medieval sluice or underground spring. In fact it turned out that back in the 60s it had been the home of the Water Board but the name had stuck.

No-one questioned any of this. Except me.

I wonder why so many simply follow such nonsensical meaninglessness seemingly without question whereas there are people like me who get into endless trouble by saying like an annoying three year old “But WHY?”

 

bc862b3afde7bb39bda16eb9db545fa9--mad-quotes-mad-hatter-quotes

 

This was all a useful training ground for my time with the NHS both as a patient and someone attempting to work on the inside.

Take a (not very) random example – the NHS Horizons Team. I was contracted to them for over two years via a Parcel of Rogues called Capita. I am much happier organising my own travel as I get very anxious and it helps me feel a modicum of control. Plus, as I have a Disability Railcard it actually SAVES the NHS money to allow me to do this. Not so. This group of self-professed rebels adhered rigidly to the policy of booking through some agency charging way over the odds it seems. “But WHY?”

The procurement process made the case of the pink paper that wasn’t pink seem perfectly normal. I had to pretend that I was a company delivering training and development events. I had to promise that I had checked the passports of all my staff. I also had to confirm that I was providing polystyrene cups at my non-existent training events. I finally had to provide evaluations of my non-existent events from my non existent trainees. “But WHY?”

As a patient, I have fallen down the rabbit hole many many times. I am currently occupying an acute bed that I do not need as I became so unwell with stress from working with the above team that I was unable to look after myself. Paramedics were so concerned they issued a formal safeguarding alert. At the point of admission, there should have been joined up working between the NHS and social services on working towards a safe discharge. Apparently however, I had to be declared medically fit before Social Services would take any action. Yesterday I was declared fit and there was not a social service bod to be found anywhere near me. So I am in a bed much-needed by someone else as if stuck in some surreal version of the Peckham Travelodge. “But WHY?”

Last night I encountered the arcane and labyrinthine process of trying to get pain relief at night in hospital. I have some joint and bone thing going on which from time to time gives me quite unbearable pain. I get asked to grade my pain from 1-10 and this was a 10 without a doubt. I felt sick and dizzy as a result of it. I asked for help at around 9pm.

I waited. I waited some more. Then about midnight I went to ask where they were at with getting me help. The responses included “we tried very hard to get a doctor.” I asked for specifics of just what they did. The answer was “we wrote your name in the book”. Off I went spiralling down the rabbit hole again.

rabbit hole

This time the Queen said “we have to prioritise, you know”. I discovered this book is where the details of anyone in pain or needing fluids etc at night have to be handwritten by staff. It is a bog standard notebook. Every ward has one. Then if a doctor happens to swing by, they will look at the book and decide from there whether someone needs to be seen. If pushed, the nursing staff will track down the Site Manager and based on, I don’t know, casting the runes, will then decide to proceed to contact the doctor or not which was clearly what happened in my case. By this time I was pacing the corridor in agony. The two nurses on duty told me they agreed with me, that they were both from other countries, in neither of which would such a system be tolerated. It added to their pressure and led to delays or total absence of care during the night for people like myself in dire need. This is in a hospital with its own cinema and an indoor palm tree garden. The reliance on the notebook from the local Rymans or wherever is such an anomaly. “It’s the way we do things round here” “But WHY?”

The way we do things round here

People are apparently too scared to question unless their minds are wired like mine. They are ready to accept a piece of white paper is rendered pink by writing PINK on it.

BUT WHY?

 

emperors-new-clothes