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. 

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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

 

 

 

 

 

 

 

 

Why?

Housing2

“We don’t deal with people, we deal with bricks and mortar” Housing Officer, the Royal Borough of Kensington and Chelsea

I will never forget those words. They were uttered at an event in North West London which aimed to get the various services utilised by people with mental health problems, to work together. The Housing Officer’s comment is now given extra significance by the fact that only a few years after it was said, the preventable deaths at Grenfell happened on her patch.

I write the week after the first anniversary of this outrage (I can’t use the word tragedy), and am recovering from the effects on my crumbling frame of walking silently and marching noisily with those affected – families of the dead, survivors, local residents, firefighters, mental health professionals, and others who, like me, care deeply.

I have been reflecting on why I involve myself every month in the Silent Walk and attend as many events as I can. The reasons are complex and intensely personal. I hope to unravel some of this in this blog. It would seem to be a mixture of empathy and fuelled partly by anger.

Empathy

I have lived with the effects of extreme trauma most of my life but particularly after an incident in Belarus spun out of control and led to the death of my Manager and colleague. I have written about this in other blogs in detail. I was dispatched to “sort things” by my employer Aberdeen City Council whose primary objective was to avoid political fallout. There politicians were behaving extremely badly that day and this reckless behaviour led to unnecessary deaths. I entered a gothic horror mortuary to identify remains believing firmly in the narrative I had been given about this “tragic accident”. As Victor Frankl said:

“Those who have a ‘why’ to live, can bear with almost any ‘how’.”

GrenfellArt6

I will never forget the day the Leader of the Council turned up at my flat late at night drunk and told me what had really happened, that the meaning that had kept me going through it all started to crumble. We had been lied to. I had been manipulated. Before she had even known they had died but were simply missing she had a superhuman, or rather inhuman, drive to protect her position. She found my dead manager’s camera, took out the film, brought it back to Aberdeen and had it developed in a private lab. She showed the pictures to me that night and I felt vomit rise up to the back of my throat.

Then of course, I started to struggle to keep the myth of what really happened going. I was already warned I had an “over developed sense of justice” so I had a need to tell the truth. They had a need to suppress the truth. Inevitably this was going to end in destruction. It led to PTSD.

Much of what helps people with trauma is “Management of Meaning”. Frankl knew this. I feel the trauma rising in me when I feel powerless. When I sat up watching online the horror of Grenfell unfold, I felt powerless. This in a nutshell is my WHY. It is WHY I turn up and do the monthly Silent Walk. This is WHY if I can, I shake the fire-fighters’ hands and thank them. I look into their eyes. I can see the trauma in those who were there that night. This is WHY the key, I believe, is collective action which unites the strengths of the community so they are not consigned to a box marked “victim”.

I became a victim. I bought into the messages I was given that I had no right to participate, no right to a say, no right to claim assets while dominated by deficits. It took a very long time for me to break the walls of the box down.

 

Anger

Grenfell and the response to it has consumed me with anger. Quite simply, I need to channel that anger in a positive direction or it turns in on me.

And anger is a major part of the grieving. I know what it is to be negated for having the gall to speak inconvenient truths to those in power. I know what it is to see blame being distributed to anyone and anything other than those who were actually responsible. At one stage, I was summoned to the Chief Executive and made to swear in front of a Justice of the Peace, that I had properly briefed the colleagues who died prior to going to Belarus on potential dangers. I still remember the exact words of my reply:

“May I remind you my job was to provide information on safety in Belarus, not to advise officers senior to myself how they should conduct themselves when abroad”.

It was inevitable that Survivor Guilt set in as I absorbed on some unconscious level, that I was somehow responsible. As I started to become unwell, the truth kept spilling out of me. At this stage, I had to be extinguished. And they very nearly managed it. However, if there is such a thing as “recovery” from something as extreme as this, it is not about “getting a job”, it is about finding my voice. These days I choose to be a voice rather than an echo.

Speakout

So much of this is familiar to me. Yet I am well aware I come to this with a degree of privilege. Despite my circumstances, I am certain the Royal Borough of Kensington and Chelsea agreed so readily to house me and then did so in the “posher” end of the Borough as I was still able to come across as one of their tribe – white, educated, middle class. The first property that came up was in North Kensington. I was informed I was allocated that property in error and soon was headed to Chelsea. There there was just as much anti-social behaviour but it was carried out by a public school educated son of a barrister who had relapsed on crack and set up a drug den in his flat right above me.

Assumptions, including my own, bother me. Some of the ignorance around Grenfell, the hate and bile belching from the Twitter accounts of some (usually anonymous) individuals, has really affected me. I have been trolled online in the vilest of ways as have many of the others who speak out in support of the Grenfell community.

“They were all illegals” “They were scroungers” “They all had foreign names” “Green was chosen as it’s the colour of Islam” “Why were these people allowed to live in Kensington in the first place?” “Why don’t they just get a job”.

Khadija

In fact, the people of Grenfell do not fit those stereotypes. Take for example the case of the super-talented Khadija Saye above.

I also compare this hate-filled narrative with the story of Bassem Choukair – a very popular and hard-working member of the great team at M&S in Earls Court Road. He died, his wife – a nursery teacher – died, her mother died, and their three beautiful daughters died. Bassem was so devoted to his team that he phoned from the tower at 2.30 am to leave a message for his manager that he would not be in to work that day and he was sorry for letting them down.

This, and countless other individual stories of the human beings who were incinerated in their own homes that night, just does not fit the picture the haters would have us believe.

Bassem

The book of condolence signed first by his colleagues then members of the Earls Court community and beyond gave a picture of a funny, friendly, dedicated family man. I know they miss him terribly.

Bassem2

Once again, the haters choose to ignore facts like these.

In essence, Grenfell just like Chernobyl in which I was involved, Piper Alpha, Hillsborough and so on brought out the worst in humanity, but also the best. When Chernobyl happened, people were kept in the dark and were out rehearsing for the annual May Day march. M’aidez. Save Our Souls. First they took the officials to safety. They even got the sheep out before the people. It was easier of course to keep the lid on information in those days. It is not so easy now.

I have been showing solidarity with the North Kensington community since the day of the fire. The Devil may well be in the detail, but so are the Angels. Here are some small examples of things I have heard or witnessed personally over the past year which restore my battered faith in humanity:

  • The rise of Leadership in a community that previously believed no-one would listen to them. This already started with the renewed confidence that started to develop when Emma Dent Coad was elected our MP. The winds of change had begun almost imperceptibly to blow. When people from the Grenfell community were finally admitted to give testimony in the first Council Meeting after the fire, I heard them speak with such eloquence, dignity and power. This was community leadership being revealed before our eyes. I have never seen Leadership as being about hierarchical power but something citizen-led that was familiar to Lao Tzu:

LaoTzyLeadership

  • The courage of all kinds of people who went towards the fire to try to help. I am thinking of the nurse at St Charles Hospital close by. He was up early for the Ramadan tradition of pre-dawn meal Suhur.  He ran towards the tower along with other Muslims and started to do what he could. He distributed water along with the group to which he belonged who are all from Sierra Leone. After that, he went to work and did a full shift on a ward on which I have been a patient many times. That group from Sierra Leone lost one of their number in the tower.
  • On one of the silent marches I noticed a small boy with his Mum. He was sticking a picture he had drawn of his best friend Mehdi who died in the fire, on a pillar which had personal messages written on it. I spoke to his Mum. She told me of the support he was getting at school, but that his older sister also lost her best friend. She was at that stage still too traumatised to come out of the house.
  • Members of the CNWL NHS Foundation Trust Grenfell Support Team told me how one of them was working with a small boy who had lost his father. A tattered item of his Dad’s clothing was found in the wreckage. That staff member made a blanket from the tatters for him to hold close.
  • The firefighters of Red Watch Paddington ran the London marathon in full kit. Some were still traumatised from having been first responders on the day of the fire. At the Justice4Grenfell march on the 18th I spoke to a number of firefighters who were either directly involved in the incident or who had been impacted upon particularly by the blame that was being dumped on them from a great height. Every Silent Walk I do, see the firefighters on parade and I feel in my gut the intensity of the emotions they are feeling.
  • On the day of the anniversary, I met a number of survivors. I met a friend of Bassem Choukair, who was wearing a T-shirt with a picture of the six members of the Choukair family who died that day, pushing another survivor from the 9th floor in his wheelchair. To me this signified a great deal.
  • The space under the Westway where the Wall of Truth is situated and from which you can see the Tower, has evolved into a meeting place and a sanctuary.  There is a library. There are sofas set out. There is a chess club. There are candles. There is art. There is a piano. There is always someone on hand to listen, to chat to, or simply to sit in silence. These were not provided by some Social Services team, but came from the community members themselves, the grass-roots from which something about hope, about strength, repair and yes, justice, has tentatively started to grow.

seedsofhope

Thursday was about grief, about mourning and commemoration. The crowd of an estimated twelve thousand people marched from the Wall of Truth, up Ladbroke Grove, past St Charles Square where I was once housed in a homeless hostel, to St Marks Park where there people of all faiths and none joined the Muslim community in Iftar – breaking the Ramadan fast.

The highly emotionally charged silence spoke in many ways louder than words. In contrast, we marched through Whitehall on the 17th of June to demand action. We chanted, we shouted, we demanded. Of course it gave us a channel for anger. But among the chants there were again those tiny shoots of hope. In one of the many impassioned speeches, I heard words which are music to my ears as they sum up my own motivation in life.

“It is time to stop doing ‘for’ and start doing ‘with'”

And my favourite chant resounding through the streets of Whitehall:

“What does Community look like?” “THIS is what community looks like”

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This Community has empowered itself and the genie is out of the bottle and once this has happened it is impossible to stuff it back down. The days of being at best passive recipients of the largesse of the privileged, at worst, the silent victims of their prejudices are over.

Provided they do not succumb to the divide and rule that so often those at the top of the hierarchy utilise but combine strengths, there is hope for the survivors and families of Grenfell and the local community.

 

 

RIP Bassem Choukair, Khadija Saye and the seventy others in whose name change will come.

 

 

 

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.

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

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

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

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

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

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

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

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.

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

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

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

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

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

As it states in the Five Year Forward View:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.