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.

noise-pollu

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

 

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. 

 

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