Woke up after a night of feverish nightmares in which I thought I had lost Izzy. The American had killed her. I briefly had no idea where I was and why my window was half covered by one orange curtain. Then I remembered. I was back in the bin. I believe Therese Coffey in he brief but groundbreaking tenure as Secretary of State for Health & social care introduced not only a ban on the Oxford Comma, but introduced a pilot It’s Curtains for the NHS initiative where each window has a single curtain. Brilliant.
All of this was with the background of pneumatic drilling and banging right outside my door as Peabody Trust, our landlord, decided to choose to start major renovations while all residents were in the grip of serious trauma.
I attended Dramatherapy which I find intense but helpful, During the relaxation exercise I realised how tense I was round my neck an shoulders. I felt the sensation of an emotional tsunami rising up to sweep me away. I realised the stress and terror of recent times were still stored in my body.
During the group, I was summoned to see the Psychiatrist who seems to have an uncanny knack of choosing when I am in a therapy group, to summon me to ward round. However, I rate him highly as he treats me as a whole person, not just a walking bag of symptoms. I am treated genuinely as a partner in my care and as such, I trust him. This is a first in over 20 years in the ‘the system’. Ward rounds are intimidating as the Psychiatrist is flanked by another doctor and a nurse at the very least and very often a crowd of students. I never refuse to have students present as they need to see practice in action, not just through books & lectures. He made a few adjustments to my meds and advised me to engage with AA while here. A Psychiatrist who understands addiction is a very rare beast.
I returned to the group for the last 20 minutes. We had to choose cards and construct a story based on what we had chosen. I chose mine at random. Mine included a fire scene of destruction, a Ukrainian vinok (flower crown with ribbons, and the other card was a a set of scales with the background blue at the top and yellow at the bottom.
The other patients are a mixed bag as we are all thrown in together. People can be very Ill very demanding and some, I am afraid, seem stuck in a never-ending cycle of destruction then punishment, refusal to be allowed out even accompanied and at worse, forcibly restrained. This is thankfully very rare but when it happens, it is utterly shocking. Most here are highly intelligent and creative. it is a waste not to take heed of our insight.
I could tell right away that there is a serious shortage of staff in the unit. it means staff are brought in from other wards. So are agency staff who have never been to the ward before, and with all that comes a feeling of panic that is palpable. That panic seems to pass on to some of the patients who then start to cause their own individual methods of mayhem. That of course exacerbates the problem. There is a domino effect that seems to be happening most if not every day.
I felt slightly better later in the day and so struggled home to check on Izzy. I had no idea how depleted my energy has become. I have to visit her daily this as her Uncle Tommy who used to look after her died shortly after the second evacuation of the building by terrorist police. I don’t want her usual cat sitter who is a young girl on her gap year after school, in the flat in case the American targets her.
There is a very large mountain to climb to get my sense of self back. The physical bit I can do, but the deep-rooted trauma brought screaming to the surface due to the neighbour being apparently very serious about killing me will take a very long time.
On the positive side. I am no longer alone in my flat shaking in terror. I am in a safe place, putting my shattered self back together and for that I am truly grateful.
As Dame Donna Kinnair, then Chief Executive Officer and General Secretary asserted on the 1st anniversary of the start of the pandemic, nurses are neither heroes nor angels. She rightly reminded all of us who needed reminding, those of us who were out on the steps clapping or banging saucepans, that they are professionals who are “highly skilled and carrying out a safety-critical job”. Further, in the same interview she says “Old-fashioned stereotypes of nurses as handmaidens of the ward have been rubbished.” (David Doyle, In Your Area, 2021).
I am not a nurse, but even I find the use of the terms “Angels” & “Heroes” deeply demeaning and highly patronising. Dame Donna was being rather optimistic in asserting that the stereotypes have been consigned to the bin. They are still around particularly among those who hold the power and the purse strings.
I am currently an in patient on a mental health unit having had a bad episode of my long term condition – Post Traumatic Stress Disorder. I know most of the staff here well. I have never seen such low morale however nor, indeed, such exhaustion.
Mental Health nurses and Healthcare Assistants are already the poor relations in the NHS family. The oft talked about ‘parity of esteem’ between mental and physical health in reality does not exist. Staff and patients need deeds not words, to quote Emmeline Pankhurst.
During my admission I have witnessed staff having to cope with violently psychotic patients, having to be ultra-vigilant over patients at risk of self harm or suicide, be a listening ear to patients in distress and their worried families, act as security guards, clear up mess, deal with a constant barrage of demands from patients wanting to be accompanied outside so they can smoke – the list is endless.
I am not saying they are all perfect. Every team has bad apples but with staffing levels dangerously unsafe, they need all the staff they can get.
These are specific examples I have witnessed personally:
One morning I was up as usual very early which I like to do before the chaos starts. I noted two patients standing opposite the reception desk being abusive. The two night staff told me they had been doing that incessantly all night without stopping. It had prevented them from having their statutory rest breaks. They are beyond stretched. A medieval rack comes to mind with a wheel cranked by assorted Tories in shifts.
Every single morning of my 12-day stay has started with a palpable feeling of panic as they try to paper over yawning gaps in staffing levels. They shift people round from other wards and rely on bank and agency staff. On this ward according to a senior nurse, they are supposed to have 16 staff in total. Right now they have five. There is no way this degree of staff shortage can guarantee patient or indeed staff safety no matter how dedicated the staff may be.
I have been on both sides of this having been a frequent patient and also run a consultancy where I used my lived experience and what I learned at the NHS Leadership Academy to fight for improvement and patient safety. I understand the pressures staff are under more than most. Patients, particularly those who are detained under a Section of the Mental Health Act, only see staff refusing their requests to be taken outside for a cigarette or to the shops. They can naturally get angry, and this can lead to even more incidents. It’s a particularly vicious circle.
And then there’s the shoddy state of some of the equipment they have to deal with. There are two computers for patients’ use, neither of which work. The washing machines are ancient, the new so-called “safe” bins are not fit for purpose as they block up almost immediately (source – 20 members of staff whom I asked ‘what do you think of the new bins?’ 100% replied ‘rubbish’ and other things not printable here). Yesterday I had to leave early to let cleaners into my flat. I had to leave without my morning meds including pain relief as the computer system had crashed again.
On another ward here on a previous admission the washing machines were so past it, they were shredding people’s clothes so staff were washing clothes by hand for patients. This was not so bad for me as I could go out and use a laundry, however those detained under Section did not have this privilege.
It was a similar story on medical wards. I was on a general medical ward before COVID but post Brexit referendum (just to emphasise that blaming the pandemic for all this is missing the point). Staff shortages were already very obvious.
Half the patients on our bay had dementia. One night there was precisely one Healthcare Assistant on duty responsible for two bays of six beds each and a side room. She had no other help. Our ladies needed to be watched constantly as one of two would try to get out of bed and could potentially injure themselves. With all the will in the world, there was no way this single HCA could keep an eye on all the patients. Nurses are amazing but cannot see through walls.
One lady was very adept at getting out of bed and had an ability to sprint like an Olympic athlete. Three of us who did not have dementia took it in turns to watch these ladies and alert the HCA if there was an escape attempt. This lovely Jamaican lady got out of bed and started sprinting down the corridor at great speed followed by me in my regulation hospital pyjamas.
The next morning the lady told me ‘I feel mucky’. I helped her have a shower as there was no-one available to assist her among the staff. I had never even given my own mother a shower so it was quite an experience
Later I found out that Matt Hancock had been in the hospital that night pretending to do a night shift in Paediatrics for a photo op. There was a sickening picture of him in immaculate freshly pressed scrubs surrounded by nurses with very forced looking smiles. I swear if I had known I would have gone down there and frogmarched him up to our ward so he could see the reality rather than the Potemkin Village.
In essence I don’t just blame the government for this though they are by far the main culprits. I have also seen such waste. When I had a two-year contract with the NHS Horizons team. It would appear to have been a vanity project for one ‘leading lady’ of the NHS.
It involved running events in which NHS ‘leaders’ were encouraged to throw scrunched up paper with a ‘pledge’ on it & then have a paper snowball fight. On another occasion, a very shouty American-style seminar involved creating something (out of pipe cleaners & coloured card etc) we thought the NHS would look like in 20 years. My table was made up of very senior clinicians who looked horrified. I told myself ‘if this descends into Interpretive Dance, I am out of here’. Sure enough, one group got up, plugged in a phone, happy clappy music started and I, along with other introverts, raced to the door to get out.
We also spent a long time being paid to come up with a new ‘strap line’ for the NHS. The result? “Change is Changing”. Change changed so frequently as these Transformistas, as I called them, were like magpies. They’d pick up some shiny new thing from say, the Harvard Business Review, and be all excited to the point of euphoria. By the time said transformation reached the grass roots where the hardest work is done for the lowest pay, the Transformistas had moved to the next shiny thing.
So yes. There needs to be more funding from the government, safe staffing levels, and pay commensurate with the level of responsibility. In addition though, there has to be some kind of independent inquiry into value for money to ensure that such funds that the NHS has are being targeted to the areas of greatest need. This means no more gimmicks, abolition of ego trips and focus on the basics. The basics include an end to antiquated IT systems, an end to staff having to use the torch on their personal phones to check patients’ eyes, no more running out of drip stands, and above all ensuring that staff do not have to forgo their breaks or even the chance to go to the toilet due to the shortages of staff.
I conclude this blog with a quote from the Royal College of Nursing:
‘Strike action is a last resort. But it can be a powerful tool for change. Unfairly low pay in our profession is driving chronic understaffing. It puts patients at risk and leaves nursing staff overworked, underpaid and undervalued.’
If you care for patient safety, you will support this strike. Nurses cannot pour from an empty vessel for much longer. I will be joining picket lines as a patient advocate who supports this strike. Enough is enough.
“Firm in reliance, laugh a defiance, (Laugh in hope, for sure is the end) March, march—many as one, Shoulder to shoulder and friend to friend” (The March of the Women – Anthem of the Suffragettes.Ethyl Smyth, 1911)
In October, 2020 a large group of Belarusian women based in London and elsewhere in the UK joined similar events worldwide to show solidarity with the women of Belarus who are playing a pivotal role in the ongoing demonstrations against the Lukashenko regime.
The London March had a very distinct theme – following in the footsteps of the Suffragettes who fought for the right of women to vote. I came up with it and dared myself to dress as a Suffragette to lead the march.
I have a 30 year long deep connection with Belarus which has been life-changing in both good and bad ways. I am very often asked why as a Scot with no family connections in Belarus, I am so actively involved in pushing for the liberation of my beloved Belarus from the iron grip of the dicator Lukashenko, and why I choose to devote myself to helping with solidarity demonstrations in the UK.
The aim of this blog is hopefully to answer these questions by reflecting on what shaped my thinking on the whole issue of power and leadership in Belarus.
These days, I am happy to describe myself as an activist in accordance with this definition by Eve Ensler:
Activists are both born and made. I have always been motivated by a sense of justice. I am just wired this way. Turning a blind eye and sitting on the fence are not part of my make-up. Life events which have involved being silenced and negated, added further layers of activism as hopefully this blog will illustrate:
The journey begins
I arrived in my new job in Aberdeen City Council fresh out of University with my Russian degree. I was to be my City’s new International Relations Officer.
On my first meeting with my new manager, a chinovnik through and through, I was told two important things – one that the Lord Provost (our equivalent of Mayor) was “a bastard on a good day”, and two, that Aberdeen had agreed to Twin with a “Russian” City. I summoned the courage to make two points:
1. This City, Homiel, was NOT in Russia. It was 1990, so it was in the then Belorussian Soviet Socialist Republic 2. I followed this up with, “have you looked on a map?”.
Homiel was the centre of a region heavily contaminated by fallout from Chernobyl four years before. As was their wont, a bunch of our whisky-laden Councillors had met their vodka-laden Belarusian counterparts on a publicly funded “fact-finding mission” aka free holiday, in France. They had been seen coming, as they had undoubtedly been bragging about oil revenue and the £28 million Common Good Fund otherwise known locally as Robert the Bruce’s Sporran. The historic and binding deal was sealed, making our Cities friends for life, through thick and thin, dictatorship and plutonium.
My first visit to Homiel was in 1990 so I started working on projects in Belarus before the arrival of Lukashenko. Even then, I was struck by how women were taking the lead in finding constructive solutions for their own issues rather than sitting back and waiting from assistance from outside. They had started forming themselves into self-help groups such as the “Mothers of Children with Cancer”, and others not related to Chernobyl directly, such as “Mothers of Afghanistan veterans” and “Mothers of Children with Cerebral Palsy”.
I started getting concerned about the UK’s emphasis on well-meaning initiatives that portrayed the people of Belarus as “victims” of Chernobyl. I was one of very few voices expressing a note of concern around the holidays arranged by charities for so-called “Children of Chernobyl”. I was and still am absolutely committed to the power of enabling children and young people to meet across cultural and geographical borders but as EQUALS – decidedly not as passive victims. I knew from first-hand experience that these projects were often riddled with corruption in terms of which children were allowed to participate, and the pitfalls of lavishing some children with gifts, then returning them home. Claims of somehow “curing” children of after effects of radiation were also very dubious scientifically.
I felt then, and still do, that our funds would have been much better spent developing the capacity for Belarusians to find their own solutions to their own problems, and more importantly have control over their own future, their own destiny.
These fledging women’s groups encountered in Belarus in the dying days of the USSR and then early days of independence were already lobbying political institutions. They already understood that strength was obtained through unity.
I remember attending an international women’s conference in Belarus in the early 1990s. The afternoon was spent visiting some of the groups I mentioned. I went to the local cancer hospital where I met the Mothers of Children with Cancer together with the female Chief Oncologist. This was a joyful, inspiring and uniquely Belarusian experience. We simply connected over tea and home made cakes. I do believe vodka was also involved. The doctor brought out her guitar and we sang together I song I already knew: “How to live in a world without love”. We decided rather than report back to the main conference in the usual (Western) rather dull manner, we would bring this doctor with us and report back in song. We invaded the conference platform – doctors, mothers, conference delegates, and reprised this song. I remember this event more clearly than any of the hundreds of conferences I have attended worldwide since.
This I understand now was a distinctly Belarusian way of doing things. They got the idea of holding a women’s conference from us, then they ran with it and created their own version rather than a carbon copy, with a uniquely Belarusian stamp on it. I became convinced that there is such power in the room when we “experts” stand back and allow Belarusians to do their own thing their way….
A few years later, the Lukashenka regime had tightened its stranglehold on Belarus. Belarusians became adept at finding ways round this. We continued to create some wonderful projects together from which I can categorically state, we in Aberdeen were learning every bit as much, if not more so, than giving. We were colleagues, we were equal partners, and we were friends.
In the late 1980s, in the latter days of the USSR I studied in Russia for a while as part of my degree in Russian. We were followed, spied upon, force-fed Lenin at every possible moment. We were forced to take part in Subbotniks and help the local Komsomol builder brigades. We were told we were “not academic” so we were sent off to singing lessons. We had hoped this might be a Lenin-free zone but it was not for the song we were taught was “Lenin is Always with you”. I was an activist in the making so gave up on classes choosing instead to meet up with dissidents, banned rock musicians, refuseniks etc. I learned the art of reading between lines and reading covert messages such as the true meaning of the sudden unscheduled appearance of Swan Lake on TV.
These skills enabled me to operate in the Soviet-style regime created by Lukashenko and his people. I learned to know when there was a problem simply from my Belarusian colleague Larisa’s change in tone of voice on the phone. Her voice would go up a few notes and the way she said “thank you Alison” in a particular way let me know immediately that something was wrong. I was always on alert for hidden agendas.
Disaster Strikes
In 1995, the bombshell happened that would direct the course of my life for the next decades and to a certain extent still does. This was the death in Homiel of my immediate boss Ann and Iain, another colleague, on an official visit to Belarus.
The day it happened, I was called to the office of my Chief Executive who said they were missing presumed drowned. They decided to send me over to Belarus immediately. It was mentioned in our newspapers that I was going there somehow to sort everything out. Rumours already abounded as to what had happened out there.
By the time I got there with Neil, a detective from Grampian Police, they had found what remained of Ann. She had been dragged into the propellers of a boat on the River Sozh and had been dismembered. Iain was dragged down after her in a vortex so he drowned and was found further down the river some days later. They had dredged the river and found some ten other corpses. We have no idea to this day who they were. It was 1995, it was not uncommon for people simply to disappear.
Dictatorship deepens.
This all happened at the time of consolidation of Lukashenka’s authoritarian rule. The female democratically elected Mayor Svetlana Goldade had been sidelined and Lukashenka supporting bureacrats now ruled with a chain of command heading vertically up to the President (the rather Orwellian-sounding Presidential Vertical system)..
Who showed genuine Leadership at this time? It was Svetlana Goldade and her team. The Lukashists fell apart. They were good at following orders with blind obedience, but as for initiative and ability to solve problems creatively and spontaneously, they had none. The blame game commenced immediately. Who was to blame for the foreigners’ deaths? The Verticals, the Lukashists, immediately pointed the finger at Svetlana Goldade despite the fact she was not involved in organising the drunken orgy that involved so-called politicians from Belarus and Scotland that day. She was not present during the drunken debauchery that led to such a loss of control that two people ended up dead. Svetlana asked me to go on radio and I made absolutely certain that she was not implicated in any way. I praised her leadership and publicly thanked her for managing the situation so majestically.. .
The River Sozh, Homiel Region, scene of the accident.
Once back in the UK, I found myself in the middle of two factions each of which expected me to protect their interests. My employers expected me to cover up the reason for the deaths and stay silent about the depravity of the “party” on the banks of the river. The Embassy of Belarus in London started to pressurise me into ensuring there would be no legal claim agains Belarus. These attempts either to silence me or to make me act contrary to my conscience were relentless and took their toll on my health. I am not wired to turn a blind eye. Suppressing the truth against my conscience had a corrosive impact on me.
The article below is largely fabricated in an early example of #FakeNews
Though my health was rapidly declining, I continued on with my work. It was at this time that I met up with the Belarusian diaspora in London based mainly around the church and library in Finchley, north London. I met Father Alexander Nadson who showed me round the library and gave me my first white-red-white badge that I wore with pride.
I was a frequent guest at the Belarusian embassy at that time. They were very different in those days but they of course had a vested interest in keeping me onside. I had no idea I was so ill so allowed myself to be rather colonised by them.
Demonstrations against the Lukashenka regime were happening more and more often in London. I remember looking out at protestors through the net curtains at the embassy window. One of the younger diplomats whispered “I wish I could join them”. He has just finished a posting as Ambassador of the Republic of Belarus to the Netherlands. Has he completely lost the integrity and independent-mindedness he had then? Rhetorical question. He had a term as Lukashenka’s Press Spokesman…this speaks volumes.
Also in 1996 the referendum on Lukashenka took place. By this time I was in personal correspondence with the then Ambassador of Belarus in London who was, it was clear, in a state of increasing despair at developments. He was a passionate defender of Belarusian language, art, literature, culture and identity. It was at odds with his position as Lukashenka’s UK (and Irish) mouthpiece – a role which he described as “weeping silent tears and laughing silent laughter”. He was however able to work within the constraints of the regime by very clever and highly creative means which meant that we did manage to carry out some good projects despite the political situation. After the results of the referendum came out in 1996 consolidating Lukashenka’s authoritarian regime he wrote this in a letter to me:
“I knew before that we are farmers, but I did not expect that so many of us want to be collective farmers. In my opinion, we are very of a hermit type. However tricks may have been done”
I urged him to quit as he was clearly being damaged psychologically by the constant need to suppress his personal views. I have tried to effect change from within oppressive structures myself and while I still believe there is power from being an outsider inside, it can be a lonely and damaging place.
In the end I was forced to give up my job as I became too ill to sustain it. With no income, I lost my home. I descended into what I call the Twilight Zone. I ended up moving to London where away from my support network, I ended up on the streets and almost entirely alienated from society and from myself.
A Voyage of (Re)discovery Scots, like Belarusians, are a resilient lot when the chips are down. Somehow I survived. I kept myself afloat with the help of friends such as the late Vera Rich, great friend of and campaigner for Belarus. The Belarusian community in London were also very supportive and I remain closely connected to them.
I gradually rebuilt my life, and emerged with my commitment to justice and to helping those who have been silenced to find their voice, stronger than ever. I have been through what most people fear most – loss of home, health, job, sense of worth, even identity, and I came out the other side. This means I am pretty much unafraid to say and do exactly what my conscience dictates. It does not give me an easy life but at least I no longer compromise my principles.
I will speak truth to power even if my voice shakes. It frequently does.
In the Footsteps of the Suffragettes
Why did I choose the theme of the Suffragettes from the early 1900s for a solidarity March of Belarusian women and their friends?
FIrst, I was struck by similarities in the images coming out of Belarus of women being manhandled by police and hauled off into police vans.
I could see so much in common in terms of symbolism between the two groups of women and their shared ability to maintain dignity and show courage in exremis. Note in particular the defiant jut of the chin in the photograph of Belarusian heroine, great-grandmother Nina Bahinskaya and her undoubted soul sister from over a hundred years previously.
This is why I suggested to the organisers of the London March that we could follow directly in the footsteps of our Edwardian sisters both in our minds but also by physically following the route they would often take, from Caxton Hall in Westminster scene of many Suffragette meetings in Westminster to Downing Street via Parliament Square.
Who were the Suffragettes?
The Women’s Suffrage Political Union (WSPU) was a women-only political movement campaigning for women’s suffrage (right to vote). In 1906 London became their headquarters. For the next eight years, the fight for suffrage became a highly public struggle played out against the backdrop of Edwardian London.
They were well organised, adopting tactics that modern-day activists would recognise as Flash Mobs. They understood the importance of “branding”, attracting maximum publicity and frequently marching in white or in their campaign colours of purple representing loyalty and dignity, white for purity, and green for hope.
They were familiar sight in Central London, maintaining a constant presence in Whitehall, petitioning Downing Street, heckling M.P.s and chaining themselves to government buildings.
In prison they endured force feeding by tube through the nose. Many of them never regained their health after going through this repeatedly. Despite this while in prison they campaigned for better conditions in Holloway Women’s prison, held literacy classes and they kept singing.
They learned how to smash windows as safely as possible in special evening classes, they learned how to make bombs, they learned martial arts. They avoided being counted in the 1911 Census in a range of ingenious ways including hiding out in a vegetarian restaurant (200 women spent the night there). They liked to roller skate and often skated during marches. They published newspapers, posters and were early adopters of merchandising. They believed in empowering their sisters through training and education. While in prison, despite being on hunger strike and force fed, they campaigned for better conditions for all prisonsers. They ran training courses in organising, and public speaking which enabled women from working class backgrounds to become effective campaigners.
These days we have other means at our disposal such as the power of social media to unite people of similar convictions. Metropolitan Police in London have praised our Belarusian rallies for their peaceful nature. We do not chain ourselves to railings, we do not smash windows, and we are not thrown in prison. (I am pretty militant I must confess, but I have been on my best behaviour so I do not show up our wonderful dignified Belarusian friends.)
The Folly of Underestimation
“Courage Calls to Courage Everywhere and its Voice Cannot be Denied” Millicent Fawcett, Founder of Suffragist Movement.
But there are other distinct parallels. Like their modern day sisters in Belarus, the Suffragettes knew they were at risk of arrest, detention, torture, and assault. They were under a constant threat of losing their children and any livelihood they may have had, and faced long-term damage to their physical and mental health as a result. This did not stop them from going out on the streets and fighting for their cause. If anything, it strengthened their resolve.
I was very struck too by the similarity in the underlying assumptions by Lukashenko and his regime, that women are profoundly unsuited to politics and leadership. Compare this to the prevailing view of men (and some women!) to the fight for the right of women to the vote in early 20th Century UK.
These are quotes from the records of parliamentary debates in the House of Commons:
‘Womenare likely to be affected by gusts and waves of sentiment. Their emotional temperament makes them so liable to it. But those are not the people best fitted in this practical world either to sit in this House… or to be entrusted with the immense power which this bill gives them.’ Frederick Banbury, MP for the City of London
‘We are controlled and worried enough by women at the present time, and I have heard no reason why we should alter the present state of affairs.’Sir James Grant, MP for Whitehaven.
‘There are obvious disadvantages about having women in Parliament. I do not know what is going to be done about their hats. “How is a poor little man to get on with a couple of women wearing enormous hats in front of him?’ Sir John Rees, MP for Nottingham East.
‘Women are tremendously accessible, extraordinarily impressionable, noted for the adoption of any new thing, and for the easy acceptance of other people’s views…Are those qualities which fit women to rule over the home and foreign affairs of a mighty empire?’ Sir John Rees, MP for Nottingham East
I firmly believe Alexander Lukashenko would have found his tribe among such relics of the Edwardian past. He made the enormous mistake of writing off President Elect Svetlana Tikhanovskaya as a mere housewife who should remain in the kitchen. Only yesterday, I was trolled by one of his supporters on social media after referring to Maria Kolesnikova, who is currently in detention, as a Leader:
“Women should not be leaders. Their role is something different”. Petr Mironenko, Post to Facebook, October, 2020.
No prizes for guessing what that role might entail – being ‘seen and not heard’, I assume.
I always knew women would be a key element of resistance to this dictatorship and a vital part of transformational change in the country. I am sorry that it has taken so long but the genie is now out of the bottle and will not be pushed back in. I was involved before Lukashenka arrived and I am determined to see him go. Then and only then, will I consider returning to Belarus. And when I do, what a reunion that will be.
I am proud and rather in awe of the brave women of Belarus of all ages. I will continue to support their efforts with all the passion of the Suffragettes, to whom the current struggle and determination to be heard of the women of Belarus would be startlingly familiar:
‘I know that women, once convinced that they are doing what is right, that their rebellion is just, will go on, no matter what the difficulties, no matter what the dangers, so long as there is a woman alive to hold up the flag of rebellion” – Emmeline Pankhurst
Zhyvie Belarus!
My thanks go to the wonderful Belarusian women who helped bring my mad idea to fruition – Nastya, Valentina, Vera, Tatsiana – I salute you, you are Honorary Suffragettes.
Thanks to brilliant photographer Anahita Moradi who came forward to volunteer after finding the event online. She is from Iran so understands deeply the impact of being silenced as a woman.
Thanks to every single woman who joined us last Saturday and of course to our “male assistants” (the Suffragettes had male supporters but they always knew their place)….
The statement by a Housing Officer in my local Borough was very revealing. The comment was made at a public meeting on “Co-production”. She was clearly confused at having been told to attend as she genuinely believed her role was not about people. Of course, this is a particularly ominous statement as only a few years later, 72 people died needlessly in her very “patch” – which included Grenfell Tower. The focus on the provision of at best a house rather than a home ignores the impact lack of suitable housing can have on the human beings who are so often the recipients of the results of decisions made about them without them.
Having made the transition from homelessness to a social housing tenancy, I have come to redefine my understanding of Squalor – one of the Giant Evils Beveridge defined in his then groundbreaking report. I believe he meant it in a “bricks and mortar” sense. Squalid conditions were clearly the key challenge in those times. These days it has deeper connotations.
An archaic definition of “stigma” is a brand on the skin. I see squalor as also being about mud that sticks. People forced to rely on Benefits and if lucky, housed in social housing, are increasingly viewed as being of lesser worth – the “undeserving poor”, the “feckless” etc. I noted with horror the building of so-called “affordable housing” in private developments with separate entrances for those lesser mortals. The creation of “poor doors” with markedly less attractive fixtures and fittings and even segregated bins to make sure even lesser the rubbish of the lesser is kept away from the throwaways of the privileged.
In 2015 the Building Research Establishment doubled their 2010 estimate of cost to the British National Health Service (NHS) of poor housing from £600 million to £1.5 billion. They also talk “other losses to society of leaving people in poor housing such as the impact on educational attainment and economic performance” (BRE, 2015). This is an ever-worsening picture with cuts to welfare, particularly targeted at society’s most vulnerable, and to services leading to denial of basic support to an increasing number of people.
In this blog, I will focus on my personal experiences of Housing in a way that might have more impact than that glossy policy document gathering dust on the shelf. This is not meant to be yet another “inspirational story” but to show in detail what the data often used in policy can only partly convey – a story of waste of assets the system can ill afford and of immeasurable cost in human terms. It is a longer blog than usual but then, it has been a long and hard experience…
Revolving doors
I estimate that lack of safe housing delayed my recovery from a combination of post-traumatic stress disorder (PTSD) and related substance misuse by some fifteen years. It actually added layers of trauma. I was diagnosed after the death of my colleagues in the course of my job in international relations and in order to try to cope I self-medicated with alcohol. That in combination with an unsupportive working culture, led to my retirement on ill health grounds at the age of 32. I lost my home, as after sick pay came to an end, I was unable to keep up mortgage payments. Homelessness does not “happen” to “other people”. If it can happen to me, it can happen to you.
I moved back in with my parents and with their support I appeared to be on the mend. I somehow succeeded in getting as Political Administrator to a Member of the European Parliament. Away from my family, I quickly disintegrated and starting on what became a dehumanizing process in which what remained of my identity and my mental and physical health was shattered. Very soon I had no job, no home and was adrift in London. I managed somehow to get myself to my Borough Town Hall to declare myself homeless and they agreed to house me. I stepped that day onto a joyless merry-go-round that was to spin on for more than a decade.
Life for me became entirely about trying desperately to get help and find ways of getting my fragmented self safely across a sinkhole-ridden service landscape. My mental health and alcoholism were worsening and I became even more of a challenge to the system. I was too mad for Substance Misuse services, and too drunk for the Mental Health services. There seemed to be a chasm between Health and Social Services in Britain, with Housing seeming to exist in isolation on some other planet.
Over and over again I appeared in hospital Accident and Emergency Departments only to be patched up and packed off to another dingy room in some other bed and breakfast or hostel well away from where my support, such as it was, was situated. Every time I would be discharged back into these unsafe squalid places where my visible vulnerability led to me to be preyed upon leading to physical and sexual assault and rape.
My response was to drink even more to cut myself off from my reality, and had I not done so I believe I would have taken my own life. The drinking would inevitably lead to yet another admission and a few days later another exit again back into oblivion.
I felt totally disconnected from the person I was before I became unwell, the person who ran international projects and was commended for her work in the Chernobyl zone. I knew she existed but was cryogenically suspended in another room in some other part of the building to which someone else with all the power had the key. I became the derogatory labels that had been slapped on me. I assumed that was all I was worth and the “system” did little to lift me out of this pit.
I was eventually given a place in a Turning Point supported housing project. For the first time in years I had a safe roof over my head. Turning Point clearly understood the importance to their client group often battered into oblivion by mental health and substance misuse issues of an environment in which it might just be possible to regain some dignity and start to heal. I cried with joy that I actually had a kettle and a toaster. I recall my first night there. I was so unused to being in comfortable surroundings that I thought I might not be “allowed” to sit on my bed so I sat totally motionless on an armchair not quite believing I had the right to be there.
I felt devoid of any rights by this stage. I had been stripped down to nothing and re-labelled as “vulnerable”, “complex” and “hard to reach”. I absorbed and became what was written on my labels. I believed that I was now the “undeserving poor” grateful for crumbs off the table of the worthy and happy to tolerate inhuman conditions as I was “lucky” to have a roof over my head.
It was to be a long and hard process of pushing the rock up the hill from then on but at least the rock started coming to rest a little further up each time. I was starting to break down the walls brick by brick.
I recovered sufficiently to move on from Turning Point to a social housing tenancy. This brought with it a whole new range of problems. I was simply plonked in the nearest available space with no consideration for my mental health or precarious recovery from alcoholism. Under such conditions I stepped back again on the merry go round of relapse and hospital admissions during which every time “unsafe housing” was writ large on my notes. What did and indeed does “unsafe” housing look like?
I have never grouped together the problems in two housing associations – then Servite (now Optivo), and Family Mosaic (now merged with Peabody).
This is a list of acute failures. The chronic day-to-day grind of trying to get responses to complaints, action on repairs issues, and basic levels of customer service is always there chipping away at mental and physical health in the background. At the time of writing, my fight to get decent living conditions for all tenants in my building goes on….
Crack den central.
I was housed at a prestigious address in Chelsea. Outside it looked rather grand. Inside, it was tatty and unpleasant. I had a giant hole in the wall where a boiler had been replaced. I had another hole in the living room due to an electric heater having been simply ripped out. These were not the main problems. The main problem was that it was dangerous.
In my first few days, a lovely Canadian neighbour came to see me to warn me about the residents on the top floor. Apparently, a young woman had been lured up there and was deeply damaged as a result. She had written to the Borough begging them not to house anyone vulnerable there. They chose me…traumatised by assault and rape, and having had pneumonia through the conditions in the temporary housing in which I was placed. I had a very sinking feeling but I decided to make my own mind up. The man above me seemed ok. He was training as a paramedic, so he HAD to be ok, didn’t he?
One day I heard a commotion outside my door. The paramedic and a woman were having sex right outside my front door. I found out that he had been in recovery from cocaine addiction and had just relapsed on crack.
Within a matter of weeks, the flat above had become a crack den. We had an endless presence of dealers and sex workers from the World’s End estate. My life became controlled by his crack cycle. He would do three days of no sleep at all, with loud parties and general mayhem. Then he would pass out unconscious for a few days. Then he would be up and out on a mission to score more drugs, and so it went on. I tried my best to understand. I even did a course on Substance Misuse with a charity in East London to help me understand.
I reported everything to police. The chaos was such that we often had him arrested twice in one night. We no longer had to tell police which property we were in as they automatically knew.
His partner in crime was an alcoholic also on the top floor which I had renamed the ASBO Suite. He was vicious when drunk and a sexual predator. He was drunk all the time. He could tell when I was vulnerable, scared and sleep deprived. Just like the neighbour had warned I relapsed on alcohol and ended up in his flat. There I was held captive by this man. He kept me sleep-deprived by blaring loud music at me. Eventually he would pass out and I would make my escape. He subjected me to vile sexual assaults when I was in a dissociative state. I was completely detached, utterly frozen.
I managed to get back on track again and started the process of taking legal action. Three of us were prepared to give evidence. This man realised I was fighting back and that is where retaliation started. He would wait until I was out, tamper with the pipes under his bath, then turn the taps to full on and wait for the results. I would come home to find water pouring into my bedroom causing huge damage and so much water that the lady underneath me was flooded as well.
I became a refugee. I went to stay with my parents. I stayed with AA friends in Willesden and Brixton. And all the time my Mum was dying of cancer. This was a nightmare time given that I already had PTSD. I missed Mum passing away as I had to return to London for two days while she was in the hospice as I had a distress call to say that I had been flooded out yet again.
The crack addict and by now thankfully, EX paramedic, became increasingly erratic. He was very angry. One night, I could hear what sounded like furniture being thrown around. I took refuge in the flat underneath me. Another neighbour phoned to tell me he was outside my door and appeared to be trying to kick my door in. I phoned the Housing Association’s ASB Director at 3am so that she could hear the noise and mayhem.
Finally his Mother, a barrister, arranged for him to go off for six months to rehab. I was ecstatic at the thought of actually being able to sleep in my own home. I also had enough legal knowledge to establish that technically an absence of this length of time would require permission from the landlord. He did not have that. I advised the Housing Association that they could use this as grounds for eviction on top of his spiralling rent arrears. This worked and he was evicted.
This was not the end of the problem. He returned once again with a real vengeance. The alcoholic would let him into the building. Then he recommenced retaliation by such treats as putting his own faeces in my mail box and through my letter box.
Soon after moving in, I had a honeymoon period of a few days until that first weekend I discovered that directly opposite was anti-social chaotic gang-ridden nightclub run by a seedy individual resplendent in a faded velvet jacket encrusted with dandruff and a dirty ruffled shirt. The place was a known nuisance. I have since seen reams of correspondence going back years before my arrival but again this information was NOT taken into account in housing me there.
When they operated, my room would light up in bright red from the glaringly vulgar neon signage which would signal a sleepless night for me. I would stand on my balcony watching the patrons disgorge from the premises. Fights would break out. There were stabbings and, I heard recently, many drug deals involving Somalian gangs. It was Hell.
The Housing Officer used my mental health diagnosis to discount my complaints. Other tenants were too scared to take this man on. I was not. I started again recording everything. I was a Frequent Flier at the Out of Hours noise unit. Eventually, I was listened to. I attended a hearing at the Town Hall. I was the only witness apart from our local councillor. Again he used my mental health diagnosis to try to discount my evidence. However, it did not work. They listened to me.
To date, there is no longer a nightclub in that building. I have since moved to the back of the building and it is much quieter. I no longer stay up all night with ear defenders to protect me from the onslaught of noise, violence and red neon.
The (In)Convenient Labels
It is not the only time my mental health diagnosis has been used to silence me. I became aware of a lot of noise in the flat above me. I had also noticed a leak on my balcony from the flat above. I went upstairs and found a very vulnerable-looking Polish woman rather than the usual tenant – a young Afro-caribean man. I reported the leak. I advised the Housing Association that the person currently there was not the usual tenant. By this time I had become aware that the two Polish women were sex workers. One of them confided in me. She spoke Russian and would come down to borrow Russian poetry books. I felt very strongly that they were vulnerable. Rather than investigate this, Family Mosaic (now Peabody)’s Housing Officer decided to contact the official tenant. He apparently told him that “the mad woman in Flat 17 thinks you have Polish prostitutes in your flat”. He of course denied this. In one fell swoop my confidentiality had been breached and this man now had a major grudge at what he saw as being “grassed up”. I found out this Housing Officer then went round the whole building advising tenants that I was insane, and imagining sex workers. All of them had seen these women going out “to work” on a Friday and Saturday. I used to feel heartbroken for them. Despite the war paint and the revealing clothing, they looked incredibly fragile. I found out later they were trafficked.
The Housing Officer did take SOME action other than that. He was told by the official tenant that the Polish woman was his girlfriend. This was despite not knowing her name, and clearly managing to cross the barrier of an at least 20 years’ age gap and the fact that she only spoke Polish and Russian. I laughed out loud when he came forward with the “girlfriend” scenario. This led to my being reported for “racism” as it was implied that I did not believe a young black guy could be in a relationship with a much older Polish woman.
Then retaliation started. This time it did not involve water. I already had a leak from above so he had to be more creative. He started making a succession of fake 999 calls to my flat. He always did so when I was out. He was not very bright so he used his own phone, and then would sit on the doorstep watching as police and paramedics showed up en masse.
Finally a HUGE policeman arrived to see me. Luck was on my side for once. He said “you’re fae Aberdeen!”. He was an ex Gordon Highlander and had been stationed at the barracks a few minutes’ walk from where I was brought up. He was a formidable man. All he said in addition to “your neighbour hates you”, was “I am away upstairs to treat him to some OLD-FASHIONED POLICING”. I am not sure what this involved, though I would have loved to have been there. What I did know was that that was the last bit of trouble from the junior gangster upstairs. He eventually apologised. He has been as good as gold every since. He even compliments me on my appearance, and once asked me out…err thanks but no thanks.
From Leaks to Mushrooms
But meanwhile, the leak continued untreated by Family Mosaic. Once again I was deemed to be hallucinating. The Housing Officer who had replaced the one who was deployed elsewhere after the sex worker scandal, declared “there is no leak”. Impressed by his ability to see through walls, I nevertheless marched him out onto my balcony and parked him in front of the leak. “Oh”, he said. “Oh” indeed.
Still nothing happened. This was when the mushrooms started to appear courtesy of my “imaginary leak”. I kept reporting it. My regular #MushroomWatch pictures on Twitter were gaining quite a following. One night, I was sitting watching TV. I heard a massive crash that sounded like an explosion. Then there was a knock at my door. The ceiling in the bathroom of the flat underneath mine had collapsed. Just as well the tenant and not been on the toilet.
I saw that his flat was in an even worse state than mine. He had had water coming in for an extended period through the light fittings but Family Mosaic had of course not dealt with it. I called in the troops in the form of our amazing local Councillor Linda Wade. She arrived with her camera. By this time we could tell there were leaks everywhere. One woman upstairs had not been able to sleep in her bedroom for years. Another had Repetitive Strain Injury from daily emptying of buckets from water soaking through. While Linda and I were on a floor above inspecting further damage, by this time with the “there is no leak” Housing Officer present, another ceiling collapsed and what looked like human waste cascaded through.
Eventually this all cost way much more than the original problems and that includes human cost. I had had pneumonia-like symptoms requiring heavy duty antibiotics and steroids. This was all due to black mould. It was clear that Family Mosaic were either incapable of communicating, and/or unwilling to listen. It appeared they were particularly negligent in respect of people who did not have English as their first language. Vulnerable people were in a particularly dire position often feeling afraid to complain. And of course, there was me with my Diagnosis of Negation…
Power starts to shift
At this time, I was going through major positive changes. I had started to regain my voice. I was now working, had set up my own business and was a frequent speaker at conferences. One of these was NHS Confederation. I noticed one day a tweet from my landlord, showing off that they would be having a stand at the exhibition. I tweeted back: “I am delighted to hear this, I am the keynote speaker that day and they want me to refer to my Housing experiences….“
Suddenly it seemed I was no longer a mad woman hallucinating service failures here, there and everywhere from sex workers to leaky pipes. I was apparently now worth listening to and someone to be feared. Of course I did not use the platform to out them and in fact I congratulated them for their presence there. I was approached by a group of Family Mosaic staff after my speech and they apologised publicly.
Of course this is about privilege as we should all have an equal voice irrespective of whether one has a public profile or not. However, if I have privilege and a level of protection not afforded to others, I see it as my duty to use it for the benefit of everyone.
I joined up with other dissatisfied tenants across Family Mosaic at this time. An enterprising resident in a Shared Ownership property outside our area had set up and anonymous Twitter account @ForFMTenants to enable people to report issues in confidence and hold them publicly accountable. I was amused to hear Brendan Sarsfield, the CEO (of Family Mosaic and now Peabody) assumed the culprit was me, and had summoned the Board clearly due to his fear of reputational damage. I confessed that it was not in fact me, but that had I thought of it I would not have hesitated.
From Cracked Mosaic to Merged Mayhem
Family Mosaic merged with Peabody, a long-standing Housing Association founded by US Philanthropist George Peabody. I was encouraged by this. I believed that an organisation founded and allegedly still run on humanitarian principles could at the very least not be as bad as Family Mosaic.
The Peabody Trust was intended to benefit ‘the poor and needy of this great metropolis, and to promote their comfort and happiness’. The trustees eventually decided that this was best achieved through ‘the construction of such improved dwellings for the poor as may combine in the utmost possible degree the essentials of healthfulness, comfort, social enjoyment, and economy’
These days the Philanthropic Model appears outdated and patronising. However, it could be argued, the firm humanitarian values on which it was based, have been thrown out with the bathwater. Currently, we still face a constant struggle to ensure our homes are habitable. “Healthfulness, comfort and social enjoyment” are conspicuous by their absence.
The overall impression I have of Peabody is lack of effective Leadership, communication, and general mayhem.
George Peabody believed in working with chaos and still getting work done. Sadly this has not filtered down to the present day incumbents.
In my flat, I have not had working heating since I moved in five years ago. Mine is one of the flats affected by water penetration. This is again causing damp, mould, and damage to paintwork and furniture. I have frequent respiratory problems. In addition, there is a long-standing infestation by black oriental cockroaches. They are not only deeply unpleasant, they are known to cause breathing difficulties.
Worst of all is that our lift, which was already breaking down on a frequent basis, has been permanently out of action since last Summer. We have a high level of vulnerability in our building due, among other things, to disability, mobility problems, heart conditions etc. When the lift was out of action previously, an older lady on an upper floor fell while struggling on the stairs. Residents including myself found her lying injured at the bottom of the stairs. I sat with her until the ambulance arrived. She was in extreme pain. She had broken her back and died in hospital. More recently, another tenant was found dead outside his flat. He had mental health difficulties and diabetes had caused one of his legs to be amputated. It appeared he was trying to get downstairs. I challenged Peabody on this and was advised that a full “risk assessment” had been done and NO mobility issues reported. Jack had one leg…
It would seem that once again, deep-rooted lack of humanity towards social housing residents is in play here in Kensington. In this Borough, we know what happens when this is taken to extremes
Talking to a Brick Wall
Peabody’s inability to communicate either with tenants, their staff or contractors is legendary.
Worse however, is negative staff attitude. It is clear that the working culture in Peabody is toxic. Perhaps this is why some beleaguered Housing staff in need of a scapegoat choose to treat their customers with disdain. I am familiar with much of this in the NHS, where lack of resources, under staffing, uncertainty and workplace bullying can lead to people becoming disconnected from the values that made them go into a “caring” profession.
“Peabody have consistently run down their social housing stock. All repairs are completed without checks or inspections. The maintenance management for social housing is entirely inadequate. When challenged about this Peabody reacts with contempt.” Peabody Trust tenant. https://shachome.files.wordpress.com/2020/01/sats-report-december-2019-final.pdf
I have had a Family Mosaic (now Peabody) Neighbourhood Manager (rebranded Housing Officer) express his anger that the likes of me, should “get” to live in Kensington whereas someone like him was forced to commute from East London. I have noted that tenants who are not British and who have English as a second language have a particularly hard time. I am more ready than most to understand the impact of toxic working cultures, I have direct experience, but is it EVER acceptable to advise an Iraqi tenant that if she doesn’t like it, she should go back where she came from?
So it would seem that stigma against social housing tenants comes not only from the likes of the Daily Mail but can be even more insidious at the level of the Housing providers themselves.
What needs to change?
The first thing that needs to change is the assumption that people living in social housing must by definition be incapable and unworthy of living in anything other than the Squalor Beveridge named as one of his Giant Evils. This is fueled in our times by the other Giant Evil of Ignorance manifesting itself in the scapegoating of the so-called “Benefit Scrounger”. As I have said, this seems to come both from outside and from inside the Social Housing providers themselves.
Undoubtedly the Beveridge Report was revolutionary in its day but it nevertheless focused on delivery by the State to passive recipients rather than shifting power in order to enable shared solutions. It failed to recognize that there are strengths in people and communities if the right conditions are created for them to flourish.
Housing providers and policy makers need to concentrate less on “asset management” of bricks and mortar “stock” and more on the building and proper utilisation and valuing of “human assets”. A mindset shift is needed away from the deficit model that sees people like myself solely in terms of “needs” that are all but impossible to meet due to ever dwindling resources.
They need a clearer understanding of how people and communities, including those considered the most “vulnerable” can contribute to and indeed, lead on the design and running of services. We need to shift from paternalistic insistences on “compliance” and at best, largely tokenistic consultation to genuine co-production – an “equal and reciprocal relationship between professionals, people using services, their families and their neighbours. ”
In a climate of stretched resources and mounting concern that the housing market is broken and failing residents, the concept of co-production is more important than ever. Put simply, tenants should have a meaningful role in the design and delivery of the homes they need. Landlords must acknowledge the skills, knowledge, experience, networks and resources that individuals and communities bring. There needs to be a focus on fostering equal relationships, where individuals, families, communities and service providers have a reciprocal relatiinship and where tenants are no longer “done to”.
“Co-production’ refers to a way of working whereby citizens and decision makers … work together to create a decision or service which works for them all. The approach is value driven and built on the principle that those who use a service are best placed to help design it”
Skills for Health, March 2013
“Co-production is a radical culture of trust, respect and valuing everyone to bring about a positive thriving change in a community”
Homeless link, March 2018
POST SCRIPT
Recently, Peabody sent letters out to 200 tenants claiming that all of them, including my entire household, had failed to allow contractors access to their flats to undertake fire safety checks. The tone was officious, and there were direct threats to force entry and change locks on communal and individual doors – in other words de facto eviction. Clearly no effort had been made to check the claim that all 200 households were guilty of this alleged crime. In fact there is a large amount of evidence that in our household, everyone made concerted efforts to communicate with the contractors to arrange the necessary appointments.
I have been reflecting on this since these letters arrived marked URGENT in red. I believe they show what is wrong with the culture of Peabody and other traditional social landlords, which goes back to the “bricks and mortar” theory, and demonstrates a failure to recognise the importance of relationships and trust. This paternalistic model is at best based on “compliance” and no more, and if the recalcitrant children on the receiving end of the parent/child dynamic fail to comply, they will be punished. Control is to be achieved by fear. It is little wonder then, that tenants like myself who believe in collaboration and partnership-working, end up angry, disillusioned and disinclined to “obey” orders imposed from above. This is wasteful and dehumanising, and does not make the jobs of over-stretched Housing staff any easier.
It is so frustrating to see truly radical and potentially powerful concepts being latched upon by those entrenched in the “system”. And when they are done with hijacking these terms and rebranding them to death, they make up their own. Classics I have heard recently: UnDiffusing, UnPrescribing and the famous decision by Sussex Partnership to relabel patients on acute MH wards as “Service Leader” even in the case of an enquiry into inappropriate use of restraint. To render the staff sufficiently “special and different” they are now termed Leader Leaders with their own Leader Leadership Academy.
In other words, WIA has become a documentary:
Co-production is one such buzzword very often used as a rebadging of patient/service user involvement. I see widespread co-option and dilution of more radical concepts like this in order perhaps to be able to slot them into existing structures without the risky and scary business of actual change.
Defining the Indefinable
The New Economics Foundation (NEF) defines Co-production 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” (NEF 2009)
The key words are “equal” “reciprocal” and “agents of change”.
It is NOT a synonym for public engagement, service user 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.
As Jane McGrath @WeCoproduce of West London Collaborative rightly states
“I regularly have to challenge very senior people and we often get stuck at some point during the process. This usually revolves around denial of one consistent and very inconvenient truth: patient involvement is not co-production.”
The term was first coined by Elinor Ostrom at Indiana University whose receipt of the Nobel Prize came as a surprise to many. Read more about her here:
http://educationnext.org/nobel-prize-winner-elinor-ostrom-and-her-theory-of-co-production/
The key point she was making 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 take responsibility for 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 influence change as a powerful group. For more on Ostrom’s thinking developed in a healthcare context take a look at this article:
Looking behind the buzzword early on by going right back to its roots created in me a pilot light that ignites when genuine Co-production is present and a warning bell that rings when it is being talked about but is there in name only.
The trouble with defining co-production is that it is primarily a reframing of the traditional citizen recipient/service provider relationship – from parent/child to adult/adult. it is more of a mindset than a model hence the difficulty faced by those in a system that relies on boxes and spreadsheets. Those who feel naked without a precise definition are undoubtedly likely to feel very threatened for it is not a model, it is a way of being, acting and thinking. It is about seeing people not just as bundles of needs but as possessors of assets irrespective of how “throwaway” society may consider them.
“Throwaway People” was coined by Professor Edgar Cahn. Cahn, a US civil rights lawyer and speechwriter for Robert Kennedy, suffered a massive coronary at 45. Pondering in his hospital bed upon the resulting apparent loss of who and what he was before he became ill and how that felt, he went on to found the Time Banking movement. This provided a vehicle to make Co-production a reality – the practical means to see to see those declared useless by society for whatever reason, 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)
Are we blobs or squares?
We true co-producers are brave enough to pitch our tent in the no-man’s land between the factions which provides that space where we can venture out of the bunkers and over the patient/professional demarcation lines.
The Parable of the Blobs and Squares was created by Edgar to explain the complex issues around identity which may arise when people endeavour to put the theory of Co-production into practice.
Are we blobs or squares? Does your job title or other labels require you to change your basic shape in order to fit?
Or are you perhaps safer in the “patient” box? I was consigned to this box early on and though it was dark in there, it started to feel way safer.
Bridge builders
How do we bridge the gap between two tribes of “them” versus “us” in practice?
As a healthcare professional you may be under pressure of deadlines and in possession of an ever-dwindling budget. Suddenly you are being challenged by patients to be less controlling. As a patient, I might have become ground down and cynical after years of attending events labelled “co-production” where the status quo has remained firmly in place and the locus of control firmly still in the hands of paid professional. I might be wheeled out to be “inspirational” while all the time screaming internally “but I could do so much MORE if you would let me!” This is where the Bridge Builders come in.
My thinking around this as usual came about from a very uncomfortable situation. I was delighted to be asked to work on a stand at the prestigious BMH/IHI Quality and Safety Forum alongside team members from the part of the NHS with which I was working as a Patient Leader. Shortly after arrival I was asked hastily to leave the stand as apparently did not have a formal NHS contract. Suddenly my “otherness” my “outsider” status was painfully clear. It was tough. I yearned to be a worker among workers, a friend among friend after such a long time in the wilderness. I had not worked due to illness for 17 years at this point. Trying to find “my” people, I sought out the Patient Panel and was not part of that either as I had not applied to join. I found myself in that no man’s land not at all sure who or what I was. Had I now morphed into a professional and therefore lost my “patienthood” or was I simply a patient trying and failing to be seen as a professional? Once the discomfort subsided I reflected on the fact that, though very uncomfortable, it was exactly where I needed to be.
I prefer to be a bridge builder rather than stranded on the banks. We Bridge-builders occupy the often uncomfortable space between patients/carers/citizens on one side and the demands of the system on the other. Dealing with Leaders for whom the ceding of control to a group of “outsiders” can be particularly challenging. That’s the thing about being a bridge, for people to meet in the middle the bridge must be strong enough to bear the weight. When we do this, it becomes less important whether we were labelled “patient” or “professional” but more that we work collaboratively, and broker trusting relationships to enable both “sides” to meet half way. A strong network will have these bridge builders, people who are able work across traditional boundaries while not losing that which makes us different.
Who are the bridge builders in your organisation who will broker the relationships across boundaries that are needed for it to be a network rather than a club?
Timebanking as a catalyst for Co-production
Timebanking is a useful tool to enable organisations to make traditional patient and public involvement more co-productive by addressing the key core principle of reciprocity.
After many years giving my time for nothing as an active service user I felt at times undervalued as often the only unpaid person present facing an over-riding assumption that the only skills and experience I had were those related to my illness. I was not motivated by material gain but wondered what these assumptions said about my worth.
Here is a very useful summary of the first part of the book from Timebanking New Zealand. The woman who wrote it earned Time Bank credits for her efforts:
There was something about Cahn’s examination of what worth and value can mean that really spoke to me.
Filipe et al describe in the excellent article “The co-production of what? Knowledge, values, and social relations in health care” how Co-production/Timebanking can redefine our often overly rigid understanding of “worth”:
“This (Co-production) may generate new forms of care other than health care ( inclusive relationships, solidarity), values beyond economic value ( equity, justice), and new insights and research practices that are relevant to different disciplines and practices (community participation, patient advocacy, collaborative research)”.
I decided to try see the how the academic theories worked in practice by working on a Timebanking basis at the Holy Cross Centre Trust in Camden where Cahn acted as an adviser. I got paid for every hour of my time in one Time Bank credit. I had a range of activities I could choose from theatre tickets to guitars lessons but I “spent” my credits on accredited training. Being tangibly rewarded for my time restored a sense of worth that the years of illness, unemployment, passivity and largely tokenistic service user involvement had removed. It changed how I viewed myself. Here in my hand at the end of my three-hour shift was visible proof that I still had something to give.
An example of the sort of exercise that help clarify the mindset involved in Time-banking and Co-production. It can be made really interesting by banning anything connected to professional identities:
David Boyle explores this concept further in the following article from the Guardian Healthcare Network:
Timebanking is just one of many ways in which patients/service users can be given a tangible indication of the level at which our contribution is valued. Many of us are unable to accept money or choose not to. My contributions were recognised in the form of genuine opportunities for training and development such as my Improvement Leaders’ Fellowship with CLAHRC North West London and being given a place on one of the NHS Leadership Academy programmes. These were life changing opportunities that enabled me to reconnect with the skills and assets that had become frozen over the long period of my illness and gain new ones.
I wrote more on my personal experience of this in this blog for the NHS Leadership Academy
Our health and social care services cannot afford to allow the insight and other life skills that people using health and social care services possess, to continue to go to waste. The only way forward is genuine collaboration – that powerful bringing together on an equal basis of lived experience and professional expertise. This can be challenging for all concerned. It involves redefining our jobs which may have become part of our very identities, coming out of comfort zones and being prepared to admit that we may at best only have part of the answer.
In Co-production: Manifesto for Growing the Core Economy Cahn warns in the foreword of the consequence of failing to heed this message:
“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 which apportions public benefits based on negatives and deficiencies: what one lacks, what disability one has, what misfortune one has suffered….Finally, because timebanking and co-production grow out of my own life and work in the civil rights movement, I have to add that hell-raising is a critical part of coproduction 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.”
I echo Cahn’s rallying cry. This is very far from the rather safe world of traditional patient and public involvement so often talked about as Co-production. It can feel messy and risky. But if we are able to take the risk to emerge from our boxes of “patient” or “professional,” and venture into the territory where boundaries are blurred, and both “sides” are prepared to walk in the shoes of the other, then we have the potential to create something radically new. This is not about professionals having to relinquish power in an already chaotic and uncertain climate, but about strengthening the power base so there is more of it to go around.
Edgar Cahn called me a hellraiser when we met. It takes one to know one. Let’s resist the dilution into nothing of Co-production, reclaim the term and dare to become Hellraisers to keep its flame burning.
“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.
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.
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.
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.
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.
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.
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.
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.”
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
When I was seven, my Mum took me to a matinee performance by Scottish Ballet while Dad went to the rugby. I was already obsessed with ballet without ever having seen any but every year Santa would bring me a Ballet Annual. We found a drawing I did when I was three when I could already read and write. It had a heading – La Fille Mal Gardee. I would not have had a clue what that meant but I knew it looked beautiful and the principal dancer was someone called Nadia Nerina.
The star of the performance that day in Edinburgh was Elaine McDonald. She was a red-head. She stood out a mile from the others. I would not have known that she was Scottish Ballet’s Prima Ballerina and muse to the renowned choreographer Peter Darrell.
I developed my interest in ballet as I got older and was by this time being taught by a former dancer from Sadler’s Wells. I became particularly interest in Russian Ballet as it was the Nureyev/Fonteyn era. I was particularly keen on the classical purity of the Kirov Ballet. It introduced me to Russian classical music, and then to an overall interest in Russian culture. Of course that led to my decision to take a degree in Russian and I was lucky enough to be sent twice to Leningrad. The first thing I did when I got there was to head for Theatre Square and the Mariinsky Theatre. It was the final day of the season. I found a side door open as cleaning was being done. I found my way to the stage. The theatre was dark but I could see the Tsar’s box and I could feel the spirits of Nijinsky, Pavlova, Ulanova – too many to name.
While back in Aberdeen studying I worked front of house at His Majesty’s Theatre. Scottish Ballet performed there frequently. I would often spot Elaine backstage and make some gesture of respect to her which is very much part of ballet etiquette. She was Madame in my eyes and as such could not walk right past her without acknowledging my respect for her.
At this time, I ended up spending three weeks in a flat in Aberdeen with two Kirov dancers one of whom had been in the same class as Nureyev at the Vaganova Academy. Vadim Gulyayev could turn a trip to Sainsbury’s into a drama eg yelling “I want Chorny Puddink (black pudding)” to bemused Aberdonian supermarket staff. He and Natasha Bolshakova lived on cigarettes, black pudding and Guinness. Natasha had been Baryshnikov’s partner when he left for the US. She was by far the more famous and actually better dancer but she was sweet, accommodating and calm. Vadim on the other hand was demanding, dramatic and over the top. I firmly believe he behaved in a way that he thought people expected him to behave. I had to translate some cracking lines from Vadim including telling me to advise the Board of M&S at a sponsors’ lunch that they looked like “a bunch of old Bolsheviks”. The tantrum at the technical rehearsal for their performance which was to be televised in which Vadim threatened to walk out as the TV people said they could not film with the lilac filter on which he was insisting, was legendary. I believe the lighting man that day was one Donald McLeish, Elaine’s partner. Little did I think our paths were to cross again.
Flash forward a decade or two and I am by this time in London trying to rebuild my life after illness. I volunteered to represent mental health service users on a new User-led Organisation bringing together service users and carers from across the board in terms of disability or health condition. It was to be called the Independent Network – the InGroup. I was invited to lunch by the Chair who was representing Carers. His partner was disabled after a stroke. For some reason we got onto the subject of Scotland and ballet. He said “you may know of my partner Elaine”. I said “not Elaine McDonald”. He replied “yes, Elaine McDonald”. He was the very Donald McLeish who had done the lighting for the Aberdeen International Youth Festival at which I was Russian translator.
It turned out they lived near me in Earls Court and a long-standing equal relationship between two independent people had not by choice, become that of carer and caree. I couldn’t believe it as the odds against us meeting at the other end of the country after such a long time are infinitesimal. If there is such a thing as synchronicity, this is a prime example.
We commenced to work on our plans to set up this independent network to ensure Personalisation was properly implemented in the Borough. I was to find out early on that the word “independent” and the Royal Borough of Kensington and Chelsea was the ultimate in oxymoron. We soldiered on. We had a meeting at the Department of Health who were very supportive but even they described RBKC as “patrician”. It was doomed to fail. Every opportunity to scupper what we were doing was taken. We were too clued in, too vocal, too…independent. In the end we were forced to fold. Gradually, however, I had learned his story which is also Elaine’s story.
Donald had to hand his identity over in return for the “carer” label as Elaine needed a lot of care particularly at night. RBKC in order to make “efficiencies” cut her night care. What they expected her to cope with was an indignity neither she nor her husband Donald could bear.
Donald was staying up all night to help as he would not countenance her going through the indignity of what the Royal Borough believed was acceptable. He also carried on with his activism and advocacy during the day. He would on occasion have a six shot espresso just to keep going. Naturally, it had a devastating impact on his health and the resultant treatment he has had to have with this trauma and the physical impact has cost many times more than had RBKC had provided the night care Elaine needed.
Ballerinas are tough cookies. Elaine took RBKC to court with the help of the Disability Legal Service. It took years and it was devastatingly stressful for both of them. RBKC did not hesitate to use every trick in the book to make life as difficult as possible for them both. They persevered. It went to the Supreme Court and as a result, in putting together care packages, Human Rights have to be considered.
Elaine died at the time of writing, two days ago in a chaotic Acute Assessment Unit in a public bay in Chelsea and Westminster Hospital. The staff were wonderful but once again her dignity was compromised. It was in the early hours of Sunday morning. There had been a Chelsea match that day meaning the chaos was ratcheted up a few notches.
She deserved better.
However, the butterfly has now flown. She is free of pain, and the daily struggle to remain as independent as possible while dealing with severe disability with totally inadequate care. Donald can now rebuild his life where he chooses his own path and rediscover an identity beyond that of carer.
Elaine leaves behind a legacy of bringing pleasure to audiences all over the world, and to people living with disabilities who must now have due attention given to their Human Rights when Care packages are being considered.
She was a remarkable lady – funny, full of grace right until the end, feisty and determined. To have been her friend is something I never expected. It always felt, and still feels, like such an honour.
It has been a very trying month or in other words, another very rich learning experience.
Ever since I started being pressurised by the DWP, which triggers my PTSD so badly I would gladly chuck myself in the Thames rather than go to the Balham Assessment Centre, my health has gone into decline. By this, I mean both physical and mental health. I have chronic pain from a giant fibroid which I have named Esther after a certain McVey MP and return of the epilepsy from my childhood.
It turns out I have been on too low a dose of epilepsy medication and so as more layers of stress are added, the more seizures I have.
One was unusual in that I usually get a warning a fit is coming so I can put myself in the recovery position in a safe place. This time however I must have just fallen on my face ending up with bruising on my face and a head injury. Paramedics were so concerned that instead of taking me to my usual hospital, I was taken to St Mary’s Paddington where there is a specialist trauma unit.
At this stage, I was strapped to a board and had my head encased in a padded thing that resembled something a trainee boxer would wear. I was perfectly lucid and had a great chat with the wonderful paramedics who were up from the South West for the shift. One was from Taunton, the other from Plymouth. This led to lots of talk about pasties and whether you put the jam or the cream on first on a scone.
Once I got there, I was surrounded by so many doctors and students I was really panicking. I was immediately despatched off for a CT scan which thankfully revealed heavy bruising but nothing of real concern. This is where the fun really started as I was sent off to A&E. I now know that to stand for Armageddon and Excrement.
I was given a cubicle of my own and I was incredibly lucky in that regard as there was a queue of trollies in the corridor. It was a trauma unit really, so there were RTA victims, stabbing victims and all sort of people in distress and pain all lined up waiting for a non-existent space in a cubicle.
TOO MUCH INFO ALERT:
I was wired up to several machines and had a cannula in each arm. A problem I have is that with a fibroid of giant proportions sitting on my bladder, when I need to go, I really need to go. I had been told to buzz for a nurse whenever I needed to. As incontinence was on the cards I buzzed. I usually don’t do that as I know how busy they are and try to be self-sufficient. However, there was no way I could disconnect myself from so any machines so I buzzed again. Of course then the inevitable happened and I ended up lying in my own urine and excrement. I buzzed again. This time, the bossiest nurse I have ever met arrived and proceeded to berate me for making a mess and even getting urine on her feet. There was the feeling that I had somehow done this on purpose.
Look at the mess of you. You are disgusting.
Compassionate care in action.
Eventually I was disconnected from most of the machines and left with just a drip and I know how to disconnect myself from that, though I shouldn’t as clearly there can be air bubbles which require the line to be flushed before disconnection. However, once again I had buzzed and again no-one came, so in the end I just took the risk, disconnected myself so I could get to the toilet.
I should say that I was still in the urine soaked sheets. The nurse simply put the blanket from the ambulance on top of it and made me lie on that.
By this time, I was imagining I was in a Solzhenitsyn novel. People were screaming out for morphine and the queue of trollies was not getting any shorter.
My pain levels by this time were rating ten in their one to ten scale of which they are so fond. After several hours I had not been seen by a doctor so I started disconnecting myself from my drip and waiting at the nurses’ station to ask incredibly politely whether there were any plans to have me seen by anyone. They said “hopefully yes”. It reminded my of a French colleague whom I would ask “will this be happening?” and she would say “normalement oui”. I would know then that there was not a chance in Hell it would actually happen.
In the end, I had two further seizures while in the cubicle as they had not given me any medication. I felt disorientated and sick. I buzzed again. They had said, if you feel you are going to have a fit, buzz for a nurse. I had the aura prior to a grand mal seizure. I buzzed. No-one came. I had a seizure. I came round having been incontinent again with a catastrophic headache, buzzed again, and no-one came.
Again, I disconnected myself, found a medic and advised him I had had another seizure and could I please have some help. The bossy nurse shouted “get back to your bed”.
I had another seizure. I buzzed. No-one came.
Once again, I dragged myself together enough to disconnect myself from my drip to approach the nurses’ station. I found the bossy nurse and said that I really need pain relief and anti epilepsy medication which I am prescribed anyway.
Can you tell me if I am on the list to be seen?
Finally, after I think about seven hours a medic appeared. He spent about three minutes telling me I could have some medication then disappeared.
This was when I noticed my wrist tag. It had my name as “Hotel Coulsdon” with my date of birth as “1st January, 1900”. By this stage, I felt that old.
Suddenly then I was told I was being moved. I was moved into the corridor directly next to the nurses’ station. I was so close to them, I could hear all their tales of what they had been up to at the weekend and had them clicking away on their computers. By this stage I had started being violently sick which happens after I have a fit.
While on the subject of vomit, I heard so many patients actually begging for sick bowls and no-one listening, that I disconnected myself, found an empty cubicle, raided a cupboard and went around distributing sick bowls to incredibly grateful patients.
Mid vomit, I was told I was fit to leave. Bossy nurse shouted “go and wash your face and go”. She gave me some wipes and so off I went to try to get myself looking at least slightly human.
I felt so weak. I felt so unwell. I felt so scared.
I had been found by paramedics virtually unconscious so I had no coat and more importantly, no money or bank card. It was about 3am at this time. I asked how I was expected to get back to Earls Court from Paddington and was told it was not their problem.
I was left with no option other than to leave with no discussion about how I would get home and no discharge summary.
I decided I had to walk from Paddington to Earls Court. By this time, it was about 3.30am. I know my way around that area when it is light but in pitch darkness it is quite different. The other issue was when I went to the main door to get out I found a poster saying the door was locked at that time so I had to go back to A&E and go out of some other door so I was now totally disorientated.
I was rather scared heading down the road which is clearly how the ambulances get to A&E. There was no lighting. I was imagining the Crimewatch reconstruction at this stage. Thankfully, I was headed in the right direction as eventually I started to recognise certain cafes and so forth. There were very few people around. I walked on. I actually thought about the death march from Belsen and thought if they can do that, then walking several miles while feeling on my last legs should be no problem.
I got to near the tube station when I met an angel. He was not a conventional angel in that he was Irish and said “feck” a lot. He asked me directions. I said I had no idea as I did not live in that area. He asked if I was ok. I replied I was not as I had been decanted out of hospital with no support. He said “my Mother would never forgive me if I left a vulnerable woman on her own”. I started protesting. He said “will ye feckin’ sit on that wall and I will get you home”. I was going on about how would I pay him back etc and he told me to “feckin’ shut up, I will get you home”. And so the delightful Brendan, a total stranger, hailed a black cab.
The cab driver when he heard the story was so moved he said he would do the whole trip for £10 but Brendan negotiated it up to give the driver a decent tip. He just said “I need you to get this lady right to her door safely”. He paid by card, got in the cab as far as Bayswater, shook my hand and disappeared off into the night.
It reminds me of the motto of the Shakespeare and Company bookshop in Paris:
This is a wonderful story of a random encounter with an angel. But what about the demons? What on earth were hospital staff thinking about in terms of discharging a woman with no means of getting home who had just been through the trauma of being in resus, CT scan and many hours in the Armageddon zone onto the streets at 3am? Is this routine practice?
I believe the factory line atmosphere with trollies backed up in a queue and not enough staff or space to provide anything like adequate care has caused the very same cut off from values, from caring, that Menzies Lyth talked about decades ago.
There are other failings though that cannot be blamed upon the lack of resources. I heard this same nurse berating a woman for vomiting on her clothes. She had been desperately asking for a bowl but again, no-one came. What other option did she have as she was attached to machines. I heard her say “do you think I WANT to be sick all over myself?” She had been buzzing for help but again none was forthcoming.
I am sad for St Mary’s Paddington. This was a once great hospital which in places such as the Trauma Unit still is. However at the rough end, in A&E, patient dignity goes out of the window and we are simply damaged goods on a production line, and as such need to be disposed of as quickly as possible. Only when I got home did I realise that they had forgotten to remove the two cannula so I had to remove them myself. Am lucky not to have ended up with sepsis. I saw and heard very little basic humanity. Having taught in that hospital for a few years now, I feel deeply let down, not just for myself but for the others who have inevitably wobbled alone down the dark road to nowhere in the middle of the night with no-one to help unless they are lucky enough to be met by an Irish angel.
Wherever you are Brendan, may the road rise to meet you.
I recovered sufficiently to move on from Turning Point to a social housing tenancy. This brought with it a whole new range of problems. I was simply plonked in the nearest available space with no consideration for my mental health or precarious recovery from alcoholism. Under such conditions I stepped back again on the merry go round of relapse and hospital admissions during which every time “unsafe housing” was writ large on my notes. What did and indeed does “unsafe” housing look like?
Fragments from a Half Life 