Back to Bedlam

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“Some of us are fated to live in a box from which there is only temporary release. We of the damned-up spirits, of the thwarted feelings, of the blocked hearts, and the pent-up thoughts, we who long to blast out, flood forth in a torrent of rage or joy or even madness, but there is nowhere for us to go, nowhere in the world because no one will have us as we are. (Siri Hustvedt, The Summer Without Men)”

Grief is unpredictable.

Only now, have I started to experience the feeling of utter emptiness one moment, anger at being abandoned by my best friend who was my rock, and crucially, the desire to be with him and Elaine. The latter is what has landed me back in hospital. I was released too soon according to the Consultant, hence for a week now I have been back. When I found out by chance at Elaine’s memorial in Glasgow Cathedral, that I had been excluded from Donald’s funeral, that is when is started.

abandonment

What I needed was rest, quiet, and feeling that I was safe. These basics that I might have considered the fundamentals of “care” were conspicuous by their absence. I was initially in a mixed ward dominated by two characters who were self-confessed drug dealers. At least one of whom I know is fit for discharge but awaiting housing. They were constantly abusive, sexist, ageist, disablist, and racist. They were anti-white, anti-Asian and particularly abusive to African staff and patients.

A friend of mine who was on the ward I happened to have known for at least 10 years from elsewhere. She is a beautiful, intelligent African woman. She was harassed by the two ward-based gangsters for “sitting at the WHITE table”. They were from the Caribbean so had a loathing of Africans,. We had a charming older Asian gentleman on the ward who was always turned out in his suit and tie. They took his walking stick from him and started pretending to be bent over, old men. It was heart breaking to watch, and it happened right in front of staff at reception. They did nothing. Selective Blindness Disorder would be my diagnosis.

The bellowing was absolutely constant. They would play abusive rap music at top volume during meal times when we had not choice other than to be together.

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How does one manage extreme loss and associated depression in such a background? I was terrified. At least, as an informal patient, I could go out. It was coming back that was the problem. I had such a panic attack on the bus on the way back I thought I was having a heart attack and so did the other passengers.

These two were particularly fond of invading the space of female patients. I found myself having to describe my uterine bleed in front of an audience of these men.

Meds were done over a counter in a queue. These two would stand listening over my shoulder so they know all about my health issues. They diagnosed me themselves as being a “fat, ugly, white pig”. I am very self conscious about the now visible enormous fibroid. I hate my appearance anyway and so they managed of course to go straight for my Achilles heel.

Vital signs including weight were also taken in a public space in the reception area with the results shouted from one member of staff to another who would write them down. I refused to go through this public spectacle, and was met with a sigh and extreme reluctance.

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Likewise my request to have my daily bag search to be done in private was met with resistance even after the CEO had intervened and my consultant assured me I could have privacy. The “system” was that I was expected to have my bag searched on arrival back on the ward by offloading, say, things from home such as underwear & the range of pads I need for uterine bleed on the reception counter. This would have been highly entertaining for the ward Underworld. I asked for it to be carried out in in private. Again this request was met with extreme unwillingness on.

My rape trauma is uppermost in my mind right now due to all the gynae treatment I am having. During those consultations, I can freeze and be completely unable to move. I try to move my arm but it won’t obey. Being barged into and otherwise physically invaded by large men was beyond intolerable. I was drowning in grief and the ward atmosphere weighed me down even further.

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Staff reactions varied. They would tell them to stop which was about as effective as a cholcolate kettle. One, a Ghanaian to whom they referred as a “monkey” would explode in anger. That gave this pair the extra impetus for the whole thing to escalate further. I was waiting for physical violence to break out ALL the time.
woman in fear

My excellent consultant and others came up with a plan. The two would be separated as they got worse when they were together. They would be moved to different wards although this was passing the problem on as there only mixed wards in the hospital. Another group of women would be equally traumatised. During my trip home I felt for once safe coming back. However, the first thing I saw was the two of them up to their usual hate speech. They had NOT been moved and were not going to be. This I found out was without the knowledge of the Consultant. I was moved to another ward and…found there was no room in the Women’s Area which had been a refuge in the previous ward. Now I had no refuge at all. I was also right outside the nurses’ station meaning I had shouting, loud laughter, patient details being relayed into my room meaning confidentiality is non-existent. I need peace and quiet, not the cacophony of patients and staff all shouting at once.

I could not believe I had been moved for my own safety to an even less safe ward in which there was no safe haven. Out of the frying pan into the fire comes to mind. That first night there, I sat on the floor and cried my eyes out I couldn’t even Tweet other than pictures to try to get over how I felt.
frying pan

Luckily, the men on the ward have been lovely. I had dinner with three of them last night and we had such an interesting conversation. This would NEVER have happened on the other ward. I am aware that anything could change in these environments on the head of a pin.

This is NOT the problem of one Trust. It is system-wide. Lack of staffing means people are already stretched to the limit so spending their whole time trying to manage anti social behaviour and deal with the effects of the abuse on patients and other staff, has created a pressure-cooker atmosphere. Some deal with this by becoming completely shut off and merely go through the motions via endless “checks”. There are NOT checks as to whether we are feeling alright or might need support, they are simply to record our presence on the ward. They are a useful means for staff to avoid actually having to feel anything.

I read this excellent blog https://grumblingappendix.wordpress.com/2014/01/21/ticks-all-the-boxes-the-rise-and-rise-of-defensive-nursing/ from which I now quote.

One of these less palatable consequences is extension of risk aversion out of the realm of physical risks and into the realm of communication. Where nurses’ mindset is conditioned by the prioritising of risk minimisation, fear of upsetting someone by ‘saying the wrong thing’ becomes entirely justifiable. From there, it’s a short step to ducking out of meaningful communication altogether, and taking refuge in ‘this important paperwork I’ve got to get through’. An even bigger problem is that all the box-ticking and form-filling potentially reduces the nurse’s subconscious conceptualisation of the patient to nothing more than an atomised collection of checklists and discourages nurses from original thinking.

The checks done by rote with little or no humanity can have dreadful consequences on patient dignity. A ward friend has given me permission to write about what happened to her last week. She had come out of the shower and was heading across the room naked to pick up towels and she found she was being observed through the window on the door by a male member of staff clipboard in hand doing his “checks”. Dignity is way down the list when it comes to the priority of ticking boxes.

The CQC states this about right to patient dignity:

People have a right to feel and be safe while accessing treatment in mental health wards. As the quality regulator, our priority is to ensure that people using healthcare services are kept safe and that their privacy and dignity are maintained. This means ensuring that patients are protected from sexual safety incidents, and supporting patients who may behave inappropriately.

They have clearly failed in bringing these fine words into reality

I propose:

  • That more training is carried out in de-escalation techniques.

  • That wards are adequately staffed by qualified permanent staff rather than seemingly random Bank Staff

  • That a specific focus be made in existing Trauma-informed training on the potential impact on women who have experienced sexual abuse from being on mixed wards. This training should be patient-led.

  • That it is acknowledged that having female-only areas is far from sufficient due to the need to share space for meals, queuing for medicine, seeing doctors etc.

  • That practical steps are taken to ensure dignity eg vital signs and bag searches  take place in private, and these measures be brought in without delay.

  • That a real commitment be made to eradicate mixed sex wards altogether.

For those wishing to make a start, please consider signing this petition started by Rivkah Grant @Rivkah_g after her own horrific experiences on mixed wards:

“Psychiatric wards are still allowed to be mixed-sex meaning patients are unable to get food, drink, medication, see visitors or the doctor without going through mixed-sex areas. This can be distressing especially for those who have already been through trauma in a ward in the past. This must change.

I have been to mixed-sex wards and have spoken with many people about the problems these cause. There is no room in mental health care for such places. These are not safe places for the vulnerable.”

https://petition.parliament.uk/petitions/260312

And her very recent blog on her experiences which are actually worse than mine given that my Trust to engage with me rather than rough me up….

https://lawanddisordered.com/2019/06/29/where-are-our-safe-spaces/

As for me now, I remain very weak and incredibly sad over so much loss. It is enough some days just to put one foot in front of the other. I am emotionally and physically drained but I must try to keep going as there is much to be done.
missing you

 

Why?

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“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’.”

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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.

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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:

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  • 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.

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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.