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….

DWP

Enter DWP Stage Left.

For whose Benefit?

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

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

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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?

merrygoround

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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