Lost and Found

Lost woman

 

I retreated into the woods and could not find a way out.

I was trapped in the perfect storm – extreme physical pain due to the giant fibroid currently still in residence sitting on nerves in my spinal cord and so large it has displaced other organs. It causes very heavy bleeding which then has an effect on my blood. Lack of magnesium has been defined as contributing to my increased level of epileptic seizures

I was already in mental pain due to having to accept I have failed to find work that I can do safely and the realisation that I have been way too willing to give 100% to others and receive at best 30% back in return.

I became scared to go out so I lost contact with people. I lost contact with myself. 

Lost BW

Loss

The past year has been about so much loss. I lost my identity when I had to go back on Benefits due to my inability to find work where I was valued enough to be supported properly with suddenly finding myself having to deal with the most toxic people and unhealthy culture at the dizzy heights of the upper echelons of the NHS. I had already lost my identity once in my old career in International Development to which I was devoted. I was therefore no stranger to workplace bullying so it was all oddly familiar to me when I started to work in healthcare freelance. What I had not anticipated was the trauma this would dredge up. My principles yet again got in my way. I am wired to speak out about misconduct and as such, meet the consequences. But do I really want to be someone who remains silent in the face of the unacceptable? Of course I don’t. 

truth 

 

I have been admitted to hospital so many times and at others been in hospital visiting my two friends. In my previous blog I talked in detail about the impact the death of ballerina Elaine McDonald, Prima of Scottish Ballet whom I saw dance in Edinburgh when I was 7. I found myself thrown into helping organise aspects of her funeral and in particular, trying to make sure her husband, my best friend Donald, was in a fit enough state to cope with it all.

He really was not in a fit state at all. I organised coffee and buns for the contingent coming down from Scotland and then I headed for Donald’s flat to ensure he was up and ready. I got him in a car which was no mean feat. He could hardly walk so a joint effort between myself and the driver finally got him in. He was in a complete fog, only barely aware of what was happening. I got him to the café to join everyone hoping it would bolster him. I met Elaine’s brother who had come from the US. He was Producer at Abbey Road and worked extensively with the Beatles. There were people from Scottish Ballet I knew from the 1980s – in fact the café was buzzing and absolutely packed.

When it was time to head for the Church just along the road, it became clear Donald could not walk. I sent someone over to Chelsea & Westminster Hospital to commandeer a wheelchair which they kindly supplied. I wheeled him into the Church. He then proceeded to lock himself in the toilet.

In the end I felt unable to mourn Elaine myself as I was in “carer” mode. I was also in such terrible pain from the fibroid. The funeral Mass was traditional but very beautiful. Elaine’s sister who had always been portrayed as the villain of the piece had done such a good job. At no point did I feel excluded. This all started me questioning the version of events I had been given over the years. Everything seemed to be turning upside down. I felt under immense pressure to keep going, which of course I did. I am used to functioning in extremis. it is however dangerous as all the trauma stores up to revisit me after the event, when I finally get to sit down and reflect.

We went to the cemetery. I was seated in a limo with Donald right behind the hearse. I did not feel any sense of exclusion. It seems the sister privately had started a rumour that I was the Other Woman, who had designs on the tenancy of Elaine’s flat. This was of course untrue. I respected the two of them and their volatile but long-standing relationship which endured despite the trauma of Elaine’s stroke and Donald losing his identity which was replaced by one of “Carer”.

I realise that death brings out the best and the worst in people, and families in particular. I chose to ignore the nonsense and conduct myself as well as I could.

From the funeral onwards, Donald’s downward spiral continued. It was truly painful to witness. His mental and physical health was in rapid decline. I was told by his brother-in-law that he kept passing out unconscious. By this time I had decided to try to back off from any further involvement by was persuaded to store items of Donald’s property in my flat. I had his duck collection of some 300 or so items, and large suitcases of clothes.

I had a call from Donald one night in distress. He was begging me to come round to his flat. I grabbed my keys and phone, got in a taxi and arrived to find Donald in a dire state. I sat up on his sofa for three days and nights just watching him disappear into the abyss using the same destructive methods I used to use to escape from my pain.

In the end, he walked into the living room in the middle of the night and passed out unconscious right in front of me. His breathing was disordered. It was very frightening. I called 999 and he was taken away by ambulance.

I found out that he was discharged only a few days later and it seems this was because the physical issues he had were being ignored as all the staff could see was extreme alcohol misuse. This was another case of the Diagnostic Overshadowing with which I am painfully familiar. He was on a downward spiral. I could not stop him no matter how hard I tried even to the extent of being dragged down with him.

pURPLE SPIRAL

At this time my own health was getting worse. The fibroid causes heavy bleeding which in turn affects my blood and that (and overwhelming stress and sleep deprivation) led me to having frequent grand mal seizures. I kept coming round in ambulances after having a fit in the street. I would lose my memory and be doubly incontinent. And all the time the pain was more and more excruciating. Taking my own life started to seem like the only option for me to escape from it all.

As usual although clearly acutely unwell, I was rapidly discharged from A&E as soon as I was vaguely coherent & able to stand more or less upright. Of course I ended up back in again. Nothing was ever resolved fully. I was very close to taking my own life so I tried again to get help. I rang the Mental Health Trust Crisis Line as I did not want to be dumped in A&E again only to be discharged in the middle of the night. They insisted on calling an ambulance so there I was again.

I spent a night in a packed A&E. My fibroid-related pain was even worse due to being on a trolley and had not been seen by anyone so I could request pain relief. I was in a holding centre basically, somewhere to fester unnoticed while over-stretched staff did their best to cope. I was on suicide watch and those nurses really helped. They made me tea. They cared. They SAW me. It was agreed I would be stabilised physically then packed off to a MH ward. That sounded fine. I just wanted it all to stop.

Make it stop

I was on that trolley all night and most of the next day. I was in unspeakable agony. I had also started missing my meds as they had not prescribed anything. I remained there for the rest of the following day. Finally, the delightful psych liaison nurse to whom I owe SUCH a lot, came to give me the good news…a bed had been found. The bad news was, it was in Milton Keynes. Initially I laughed as I thought it was a joke. Sadly, it was not. After a totally sleepless night, in extreme pain, I was then to endure a two-hour car journey to Milton Keynes.

I was seen by a very nice doctor but still no pain relief – mot even a single paracetamol. He also said I was way too physically unwell to be admitted to the Mental Health Unit so I was transferred to Milton Keynes general hospital next door. I ended up in A&E where I spent a further sleepless night sitting on a plastic chair. The pain was so immense that I really could not take any more.  Eventually I was moved to a bed then transferred to another bed. After all that, I had a few days being given the help with my physical state that I should have been given in Chelsea and Westminster. I started to feel gradually a bit more human. I felt grubby, had no toiletries, was bleeding heavily and had nothing to change into.

I felt like I was crumbling. I was isolated, desperately lonely and as soiled on the outside as I felt inside. I wanted it to be over by whatever means. 

OLYMPUS DIGITAL CAMERA

 

I was still on suicide watch and one of the nurses went above and beyond the call of duty to bring me clothes from her home and toiletries. She was GREAT. We ended up singing Country & Western songs together. I will forever be grateful to her. On the other hand though, three members of staff meant to have me under “close observation” used the opportunity to have a good long sleep including a lot of snoring. Had I been minded to harm myself I could have easily. It served to illustrate the lack of consistency in standards. I was spotting cracks in the system to avoid looking at the widening cracks in me.

cracked

Eventually, I was transferred to the Campbell mental health unit. It was a very challenging environment as I was so exhausted. It was noisy, constant blaring of “music”, & very unwell patients making the place feel very unsafe.

It felt like staff were only just coping and naturally, errors were being made. There were so many meds errors happening with myself and others, I lost count. I missed the meds that help control the bleeding. They failed to order enough so inevitable the bleeding got so much worse leading to more tiredness due to anaemia.

It was of course, not all bad. The consultant was excellent and changed my medication to something I have found really helpful. He was clear, highly competent and above all, he was kind. I felt seen and I felt heard.

I tried not to, but I ended up sorting stuff. I got the water dispenser fixed and the ward now has pyjamas in the linen cupboard. Kingsley had no idea that there weren’t any hence patients, particularly those like me shipped in from other areas, were having to sleep in outdoor clothes. Was this a distraction from pain? Of course it was but at least something positive happened as a result 

I went to a group on healthy eating to show willing. It was then I received a text. It was Donald’s brother-in-law. Donald had passed out in his flat and was found by one of his carers. He was bleeding.

Donald died in hospital. 

Shocked woman

The list of things which contributed to neglect screamed to me self-neglect, self-destruction and heartbreak.

I was numb. I felt shame that I had not been with him, that I had not pushed harder to get him the help he needed. In truth, however, he just could not live without Elaine. And if he was no longer her “carer” who on earth was he? Watching him deteriorate, having him cry on my shoulder, feeling utterly helpless was one of the most painful things I have ever been through.

Then something started to change. I felt the urge to take my own life dissipate like dark clouds starting to clear. It was no bad thing that I was in exile in Milton Keynes as I could not distract myself by taking over organisation of all connected with Donald’s death. I had to sit with my thoughts. I went to the Chaplaincy in the main hospital. By chance the Chaplain was there and he talked to me and gave me a beautiful prayer. I do not associate with any particular denomination, but at that time, I needed help to make sense of what had happened. It was very helpful.

clouds parting

I made a decision that I would start to show myself even a fraction of the care I give to others. I chose life at that moment. I did not want to put my family and friends through the sort of pain I felt at losing my best friend to the consequences of self-destruction which I know all too well. I had an image in my mind of a closing scene of The Piano. Ada deliberately gets her foot caught in rope which was attached to her piano. The piano goes overboard. She allows herself to be dragged under the water. Then it happens. She chooses to live. She kicks her foot free of the rope and floats upwards towards the light. 

 

Since then, I have felt much lighter. I still can’t quite believe Donald is gone. It was my birthday recently and it reminded me of all the birthdays I spent with Donald and when she was well enough, with Elaine. We would go to the river and feed the ducks. Donald would buy me stuff from the deli on the corner. I would go home armed with Buffalo Mozzarella, Italian bread and vine tomatoes.

Of course I miss him, I miss them both. There is the strange sensation that a huge chunk of my life has simply been erased. Even their lovely cat Big Boy had to be put to sleep as he was emaciated through neglect. I called the RSPCA. I sat cuddling him, gave him treats and he purred like a pneumatic drill.

 

 

Despite, or maybe because of, all of this, I have started to see light somewhere in the mist. Healing is a long process. Maybe I see there is something left of the person who had worth and that only by respecting that part of me will I come out of the mist completely.

I believe that I would not now be here were it not for the friends I have made through Twitter, my blog and the smattering of friends who have not abandoned me. I am still not great at the In Real Life stuff but maybe someday….I intend to give it a try.

I choose life. 

 

Kings Fund feedback pres

 

 

 

 

 

 

 

 

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”.

IMG_0086.JPG

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).

nurses_-_tired

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.

Hancock

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.

nurseshattered

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.

IMG_7074.JPG

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.

potemkinv

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

Time will tell….

 

 

 

Life by someone else’s numbers

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

mask

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

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

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

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

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

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

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

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

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

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

putsidelines

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

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

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

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

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

maslow

Housing – the missing link

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

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

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

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

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

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

frozen

Turning points

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

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

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

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

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

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

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

DWP

Enter DWP Stage Left.

For whose Benefit?

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

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

cinderella2

Then it happens….

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

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

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

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

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

vercliff

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

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

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

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

mental-health

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

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

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

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

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

.behind_the_mask_by_violins_and_violence-d3cnftx

First do no harm.

 

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

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

bookhousing

 

 

 

 

Hidden truths, unspoken lies.

speaknoevil

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

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

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

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

stuckmerrygoround

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

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

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

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

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

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

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

python_run-away11

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

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

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

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

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

5. Responsibility and accountability was deflected

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

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

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

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

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

cutoffemotions

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

workstress

I should know.

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

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

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

fatigue

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

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

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

narcissistwork

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

survivalcentre

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

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

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

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

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

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

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

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

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

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

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

merrygoround

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.

boot-stamping-on-a-human-face

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.

for_sale__crying_woman_by_art_adoption-d5s9wrq.jpg

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”.

broken-vessell

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.

Bull Silo

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.

leonora-carrington

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.

jargon-cloud

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.

images

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.

deadflower

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.  

7E5A218C-0DC6-470A-84BF-493E31CC5B20.jpeg

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?  

powerhungry

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.

foldable1.jpg

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?

B96EE9AA-5D74-4790-B3C4-82BA4EC2450C.jpeg

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.

eve-ensler-activist-quote

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….

brokenquote

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

 

 

 

 

 

 

 

 

The twilight zone. Part one.

Darkness5

                                                                                                                                          

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

Who is this man next to me?                                                                  

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

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

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

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

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

Darkness2

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

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

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

Psychadelic

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

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

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

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

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

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

angel window

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

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

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

HP

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

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

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

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

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

beacon

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

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

“I’d like to go for a walk”.

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

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

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

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

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

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

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

Gutter

 

 

 

 

The downward spiral

Drowning

I can pinpoint the exact moment when I crossed the line into active alcoholism rather than being a strictly controlled binge drinker. I was in Belarus with a Detective Inspector from Grampian Police. Against all odds and expectations, our combined efforts, and those of our friends in Homiel, had allowed us to arrange the repatriation of my colleagues’ remains in record time. We had accompanied the two coffins which were in a refrigerated lorry on the long drive from Homiel to Minsk. It took forever as we had to keep stopping to check the temperature. It was an unusually hot summer. We were sweltering in 34 degrees and I remember thinking” typical” that my boss was up ahead in a refrigerated lorry.

We had run the gauntlet of bureaucracy in Minsk but I had circumvented a lot of it by having blank signed letters from Sir John Everard, Our Man in Minsk, which allowed me to manufacture any random bit of official-looking paper that was suddenly demanded of us.

Finally it was done. There was nothing more we could do. The coffins were in storage ready for the Lufthansa flight to London via Frankfurt. We were on good old Belavia (NOW enjoy a pleasant flight as though apologetic for the crap flights of the past and warning us to expect at best ‘pleasant’) but their planes were two small to take crates containing coffins.

We retired to our hotel, once again back in the suites that I had bribed our way into. The DI brought out the vodka he had been given by the Homiel militia. I remember thinking “I am never going to drink that”. It was a very brief hesitation but the last time I had such a reservation about drinking for many years after that. What I know is, this time the vodka hit me somewhere differently. I have no idea what falling in love feels like but I can imagine it being something like this. Suddenly the heavy burden of unexpressed pressure, and of unreleased trauma disappeared.

God was in His heaven. All was right with the world.

I had a “where have you been all my life?” moment. I felt at one with the universe and finally, at peace with myself. It was an illusion of course, a mask, a façade, but one that became key to my basic survival until it was taken apart piece by piece.

medieval-woman-behind-mask

We returned to Aberdeen and a flurry of press activity, the ongoing existence on the first floor of the Town House of “the Bunker” where only those staff trusted with “the Truth” were hidden away working feverishly on damage limitation exercises.

I had the sense of being paraded around at this time. I was forced to go to funerals and speak at the memorial which was broadcast live. I found it hard as I did not like Ann, my boss. I found her vindictive, jealous and bitter. I did not change my views just because she had met her death in these terrible circumstances. However, I had alcohol to help suspend my set of values, and extinguish the need to care.

To begin with, it did not take much alcohol to have the desired effect but, of course, it gradually needed more and more to reach the desired oblivion. I had started to experience worrying psychological symptoms. I felt constantly as though I was about to be attacked. I had flashbacks in the sense of certain smells and sounds took me right back to the Belarusian mortuary. Alcohol could remove those symptoms. It could stop the panic in its tracks and knock me out to sleep at night. It also enabled me to LIE to the widow about what led to her husband’s death. I felt the truth bubbling up and rising in my throat threatening to strangle me. All I needed was to excuse myself and head for the nearest toilet where a few swigs of vodka would have the desired effect.

I was gradually being eaten alive by fear. Each day the list of things I “had” to drink to carry out increased. One day, I could make a telephone call, the next day I found I couldn’t without some “Dutch courage”. That continued until there was very little I could achieve without alcohol in my system. My life became dominated by finding alcohol, hiding alcohol, consuming just enough alcohol for it not, I believed, to be noticed, but still to take the edge of the ever-growing tumour of fear that was invading my entire being.

scream-fear-brain

One day I was approached, very bravely, by a colleague. She said it had been noticed that I occasionally smelled of alcohol. I can still feel the utter humiliation of that moment. She was very kind to me. However, no support was offered. I had started to drink so much that the truth would spill out of me in an uncontrolled fashion. I apparently blurted out at a Civic Reception that we had all been sold a lie about the deaths in Belarus and that there was a massive sin of omission in leaving out the details about the orgy that had taken place that day. It must have taken guts on that colleague’s part to approach me on this. I was far from ready to imagine living without alcohol to cushion me against reality however.

I was a loose cannon. I needed to be kept out of the way and silenced somehow.

I made the decision myself however. I was sitting in a Section Heads’ meeting and I was asked for my opinion on what kind of coffee machine we should have in the department. I replied “I do not give a shit”. I realised at that time that not only did I not care about the coffee machine, I also did not care about my job, or crucially, about the overseas communities with which I was working and to which I knew I was devoted. I realised that I had ceased to care and that that meant that something profoundly WRONG had happened to my personality. I had disappeared.

I packed up my desk and walked out.

Woman falling

I stepped off the edge of the cliff on which I had been teetering for quite some time. I had no parachute.

My flat became an oubliette. My days consisted of waking up feeling dehydrated and my head would start to race. I now know this “racy head” feeling was the onset of withdrawals as I would have had a good few hors unconscious without any alcohol. I would put on daytime TV and commence the operation that was getting myself into shape enough to get to the nearest source of alcohol to stop my head from racing.

Inside myself somewhere I knew what I was doing. I was killing myself by the slow method. I have a memory of walking unsteadily back to my flat past the Chinese takeaway, stepping with difficulty up onto the pavement and in my head was the line from American Pie “this will be the day that I die” running on repeat in my head. In truth I would not have cared one way or another. This was a state beyond suicide, which is an active state. I had ceased to care a damn whether I lived or died.

drowning_in_trash_by_countrygirl957-d3jvyst

And this was the beginning. There was a LOT further down to go than this.

On occasion I could somehow pull the fragments together and manage to function after a fashion. I would turn up at appointments with the Professor who is a world expert on Trauma. I was very skilled at diverting him away whenever I could sense that he was getting to the core of my trauma which went way further back than the death of my colleagues. That incident had dredged up a lot of suppressed trauma from way back. It had all been festering there like an apparently spent volcano where the lava had been boiling unseen ready to explode through faults in the hard surface. I was terrified that it was going to be unleashed and engulf me completely. I could not allow anyone near there. It was too shameful, too painful, too dark. And I had a supply of vodka in my bag to ease the pain before and after our sessions.

Women-art-by-Diana-Hansen-Young

My Psychiatrist was caught up in the idea that I was going to sue my employer with him as a key witness so our sessions were more about that than being about providing me with support. My Trade Union were well on their way to putting a court case together but I now realise I was too far gone to be a reliable witness by this time. I would be crucified.

My sense of that desperate time when I had to try to come to terms with the fact that I was no longer the International Officer. I had been my job. There was nothing else. My mother had instilled in me from early on that I was not going to make the same “mistakes” that she had in turning down a job in the Foreign Office in order to get married and have children. I was so desperate to be loved or at least accepted by my parents that I complied. The trouble with making one’s work one’s identity is that if that work is lost for whatever reason, it is like the worst form of bereavement. In fact I felt as though I had died.  I repeated over and over in my head “they think I can cope with this, they think I can cope with this”. It was dark, desperate and destructive.

woman-face-explosion-stone-art.jpg

So I drank. I just drank and drank to stop myself from thinking and from feeling. The vultures were gathering. I was getting into more and more debt as my sick pay had ended and I had been formally “retired on ill health grounds”. In addition, the physical consequences of extreme alcohol misuse and overall self neglect were becoming evident. Dad had to rush me into hospital after my stomach started bleeding. There was no time to get an ambulance. Mum developed a kind of sixth sense which would alert her to my being in crisis. She would all five foot one and a quarter of her, knock my door in to get me to safety.

In the end I had to face up to the fact that I was going to lose my home. This was beyond painful and in fact writing it, I can still feel it now. There was no other option however. I dream about it even now from time to time. I am back in my old flat that was my first home of my own.  I know I shouldn’t be there but I can’t leave. I hear some stranger come through the front door then I wake up often wet with tears.

I moved back in with Mum and Dad. With my Mum primarily “policing” me, I managed to stop drinking and at least create an illusion of being sober. However, I had done nothing to address the underlying trauma. I seemed well. I returned to university to do an MSc which I never finished. The stress of exams sent me spinning back into the vortex again.

At this point, all I wanted was to run. I managed to get a job running the Moscow School of Economics Office at Manchester University so off I went with a bank account filled up with “compensation” I had accepted from my employer in an out of court settlement. I had no idea how ill I was and that as soon as I was away from the relative safety of my parents’ house, and at large in an unknown City, I would relapse immediately. I never turned up at the new job. I had finally been consumed by the trauma and drowning in alcohol. I was now fully submerged in the Twilight Zone.

Someone had switched the lights off. I did not exist.

Downward2.jpg

 

 

 

 

 

Crime and Punishment

In times of universal deceit telling the truth is a revolutionary act. (Orwell).

In the eyes of some it is a criminal act requiring punishment even by those who know it is the truth. The act itself of putting one’s head above the parapet and going against those preferring to hide behind the wall, appears threatening, not playing the game and requires to be stamped out.

The immediate aftermath of the death of my colleagues was a whirlwind of funerals, memorials, press attention and for me, the pressure of dealing with bereaved relatives from whom the truth had been concealed.

I had started to use alcohol to try to blot out what I now know were the increasing symptoms of PTSD. I found I could drink to knock myself out to sleep and to knock into oblivion the onrush of flashbacks. It also helped me cease to care. The down side was that I had even less of a filter between my head and my mouth. The truth started leaking out in an uncontrolled manner. I became very dangerous indeed for that reason. That is when the punishment began.

I managed to keep a lid on it for a considerable time before it became patently obvious that I was out of control. I carried on working. I won major awards for my work but the toughest thing was finding myself caught between the Belarus Embassy, who were desperate to avoid legal action by the truth coming out, and my own organisation who were equally keen to avoid the truth coming out.

I have a lot for which to thank the Belarus Embassy. They offered me sanctuary – an escape from the relentless pressure in Aberdeen. I took to going down there and taking up residence at their invitation in their guest flat. It was an escape as I started to attend events with the Ambassador, have long conversations about art particularly Chagall, theatre, music, and the respective pressures we were both under in our work. He came a valued friend. We did normal things like eat pizza and his extraordinarily bad attempts at cooking in the flat “above the shop”. He believed I was the reincarnation of the Grand Duchess of Lithuania and Queen of Poland Barbara Radziwill and had beautiful boxes commissioned as a gift for me featuring her on her own and with her husband August Sigismund the Second. He bought me long stemmed roses. He took me away from the darkness for short periods. It was to no avail ultimately as I was on a downward spiral and it was to damage both of us. The clouds were gathering. The vultures were hovering.

My drinking back in Aberdeen was getting worse and worse. Every day the list of things I could not do increased. One day I could make a phone call, the next day I could not without a slug of anything alcoholic. The day I realised the effect all of this had on me was when I was at a meeting of section heads. They were discussing some project that I knew somewhere inside me I cared deeply about. However, when asked about it, I felt nothing. I said “I have no opinion”. At that stage I knew that something profoundly wrong had happened to my personality. I left the room, packed up my desk and walked out. That was the start of a whole year on sick pay.

Woman falling

I thought I WAS my work. When I realised I could no longer do it, I felt as though it was me who had died. That feeling was increased when my colleagues immediately demanded that I come in and collect my remaining belongings or they would end up on a skip. I dragged myself round there in a very vulnerable state to find my things, including gifts from children in Chernobyl like two small glass birds, had been thrown into boxes with no care or compassion, just contempt.

My GP who was also the Council’s Occupational Health Doctor had been trying to persuade me for some time to leave as the place was too toxic. He could not of course go into details but he said I was one of many colleagues being treated for stress, that it was a sick place and I would only get more ill if I remained there. However, I was devoted to the work, to the communities overseas I was helping and from whom I was learning. I had stayed on way too long and indeed I was very ill by this time. When I told him about the demand that I come in and collect my things before they threw them out, he said “they want to remove any trace of you”. By this time I wanted to remove any trace of myself. I did this by drinking myself to oblivion all day and every day. If I was my work, and I now could not work, I no longer existed. This was what it was it felt like.

My health worsened and I spiralled into debt. The Belarus Embassy continued to try to be helpful but I was being dragged into quicksand. I was in freefall. I remember overhearing Embassy staff saying “she is killing herself”. I was already dead as far as I was concerned.

thZE9PIRSA

I had been formally diagnosed with “work-related PTSD”. The doctors deliberately added “work-related” as they were urging me to take legal action. They were prepared to act as witnesses. I agreed. I had some odd idea that decency would prevail. It of course did not. I found people whom I thought were friends avoided me in the streets, whereas others whom I had not considered friends turned out to be angels in disguise.

Of course, the Council went into full defensive mode when the legal action was commenced by my trade union. Every effort was made to find other stressors for which to blame my decline into mental despair and alcohol misuse. I was summoned before a psychiatrist in Edinburgh. I went with Mum and Dad as they wanted to show him I had a decent and supportive family. I answered his questions as honestly as I could. Somehow he twisted the most innocent statement into something negative. He asked me if my sister had ever taken drugs. I replied “She’s a teenager. I have no idea”. That came out in my statement as “her sister is a known drug addict”. I can say quite categorically that this was not the case. This psychiatrist had clearly been chosen for a reason. Impartiality was not on his radar. It was distressing for my entire family.

And they decided to blame my “inappropriate” relationship with the Ambassador of Belarus and reported him to his Ministry.

Then the threats started. The female “friend” of our then Lord Provost who was the Leader of the Council involved in the incident in Homiel Margaret Smith, threatened me in the street. I recall her words exactly “you’d better watch what you are about”.

I got offered a voluntary job working for a European-funded youth project. They welcomed me with open arms given my experience of getting European funding. However when I arrived all keen to be useful again on day one I noticed something odd. I was early and spotted an erstwhile colleague from my old department scuttling hurriedly out of the building. When I got in, there was a very odd atmosphere. The warmth had gone. I was told to sit in an office and then a highly apologetic member of the charity staff asked me to leave the building immediately. They had had threats that their Council funding would be removed if I was allowed to do this unpaid voluntary job. I left the building. I had to. I could not allow this excellent charity to be damaged because of my presence.

So the punishment was to make me a pariah in the City in which I was born. And what did I do to dampen the pain? I drank. I drank to reach the stage where I felt nothing and it was taking more and more alcohol to reach the desired stage.

This was the beginning of the downward spiral. I had committed the crime of telling the truth and the punishment was to be meted out in full. But it was only the start. Things were to get so much worse.

Downward Spiral

I loved my job and I was good at it. I remain heartbroken at its loss. I do not miss the City, and I certainly do not miss the City Council. I miss being able to make a difference to people like the wonderful citizens of Homiel who gave me more than I gave them. I will never fully recover from this grief.

Grief.jpg

If you have enjoyed reading this blog, or have at least got something from it, perhaps you might consider a small donation to my Go Fund Me page. My current work in healthcare started to resemble rather too closely what I went through in Aberdeen, so at present I am unable to work until I have some time to heal. This means I have no income. More important to me however, is that my experiences mean something to my readers so please do not feel pressurised into offering me practical help. This is NOT why I am writing.

https://www.gofundme.com/AllyandIzzy

Thanks for reading this far.