Sent to Coventry – an outsider inside reflects.

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

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

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

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

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

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

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

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

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

fairy dust

That’s clear then.

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

There was no discussion regarding likely support needs.

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

tornado

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

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

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

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

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

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

Interpretive dance

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

70816624-E0E9-47AE-8557-C659EBAFF211

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

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

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

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

22688805_10156708274370898_8095115166033415802_n

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

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

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

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

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

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

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

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

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

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

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

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

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

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

C959A660-B8CE-4329-91E8-BE0A1F6F9BBC.jpeg

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

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

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

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

exclusion

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

duracell

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

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

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

coventry

 

 

 

 

 

 

 

Twilight Zone II. Maelstrom of mayhem.

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

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

chasm

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

Sisyphus

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

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

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

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

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

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

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

Woman in storm3

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

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

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

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

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

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

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

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

plant seeds

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

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

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

Hello, I am Alison and I am an alcoholic.

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

Hope

 

 

 

 

 

 

 

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

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

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

 

ladder