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….

 

 

 

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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