More Than Bricks and Mortar

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

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.

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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.

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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.

Stigma Housing

Turning points

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.

Brick-Wall-2I 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?

Rogues Gallery

Wall-of-Shame

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.

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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.

I finally broke down. I am amazed I did not do so sooner. I was admitted to the Mental Health unit where I eventually told staff of everything that I had gone through including being held against my will in the other flat. Police were involved after a Safeguarding alert and it was deemed unsafe for me to return to my own home. I ended up trapped on the ward for the best part of a year while they tried to find accommodation for me that had no KNOWN anti-social behaviour. The first attempt was to send me to a flat which turned out to be…next to a known crack den. I was moved out of there and eventually sent to where I am now. The Royal Borough apologised for getting it wrong again. Too late, I had already had another breakdown and wound up back in hospital. Eventually a new flat was found. I was assured all would be well. 

Out of the Frying Pan

This should by rights have been the end of having to struggle to have some level of quality of life. However, since then, I have endured a catalogue of appalling housing-related trauma.

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’

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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. 

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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

 

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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”. 

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“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. 

The key is NOT to erase the philanthropic values of Peabody and his ilk, but to retain the human aspects where we are viewed not as the needy, and the feckless. That means bringing the values of the philanthropists up to date so that they are suited to the modern world. Relationships based on mutual understanding and combining efforts to find shared solutions on both sides. 

 

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Co-production – Radical Roots, Radical Results

Beyond Buzzwords

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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:

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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.”

https://www.kingsfund.org.uk/blog/2016/10/co-production-inconvenient-truth

 

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If we know what is NOT, then what IS it?

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:

https://www.opendemocracy.net/openeconomy/victor-pestoff/here-comes-citizen-co-producer

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)

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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

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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.

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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:

http://www.timebank.org.nz/node/87

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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:

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David Boyle explores this concept further in the following article from the Guardian Healthcare Network:

http://www.theguardian.com/healthcare-network/2015/feb/06/time-banks-patients-lives-long-term-conditions

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

http://www.leadershipacademy.nhs.uk/blog/learn-participating-mary-seacole-programme/

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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.

Human rights

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. 

 

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Further reading

More on Edgar Cahn’s work:

https://blogs.otago.ac.nz/time-banking-nz/2012/04/03/edgar-cahn-resources-online-and-in-print/

NESTA Co-production Practitioners’ Network:

http://coproductionnetwork.com/page/transitioning-to-coproduction

Governance International:

http://www.govint.org/our-services/co-production/

Full Article on Bridge Builders:

https://www.source4networks.org.uk/resources/case-studies/110-spotlight-on-bridge-builders

Blog “Co-production, an inconvenient truth” by Jane McGrath

https://www.kingsfund.org.uk/blog/2016/10/co-production-inconvenient-tr

Filipe A, Renedo A, Marston C (2017) The co-production of what? Knowledge, values, and social relations in health care. PLoS Biol 15(5): e2001403.

https://doi.org/10.1371/journal.pbio.2001403

 

 

Back to Bedlam

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

Grief is unpredictable.

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

abandonment

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The CQC states this about right to patient dignity:

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

They have clearly failed in bringing these fine words into reality

I propose:

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Lost and Found

Lost woman

 

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

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

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

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

Lost BW

Loss

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

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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.

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

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

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

Make it stop

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

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

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

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

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

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

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

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

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

Donald died in hospital. 

Shocked woman

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

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

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

clouds parting

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

 

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

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

 

 

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

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

I choose life. 

 

Kings Fund feedback pres

 

 

 

 

 

 

 

 

Our Butterfly Has Flown

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.

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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.

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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.

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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.

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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.

RIP Elaine McDonald OBE 

Angels and Demons

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.

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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.

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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.

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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:

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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.

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All’s well on the Potemkin Ward.

It has been a challenging week and no, not just for me. I was admitted to Chelsea and Westminster Hospital due to what I assumed were new developments in the pain around the fibroid which will require major surgery. I was admitted as the lactate levels in my blood were of real concern and these were caused by convulsions.

To manage my epilepsy, I was told I must avoid stress.

Then I get a double-whammy of communiques from the DWP requiring me to prove to them that I am not just a lying wastrel by presumably having a fit and being doubly incontinent right in front of them otherwise I will tick the “perfectly well” box.

How pray tell, does one avoid stress under these conditions? If you know, please let me know.

I started the process of trying, with help, to fill in the lengthy and largely irrelevant form. I don’t remember much about that day. I know my pain levels increased to level ten on the one to ten scale and I know that by Monday I was having fit after fit. I think I counted seven.

What I now know is I also had a fit on the Friday during the process of filling in the form. The scary thing is I remember nothing about that. Nothing. I usually get an aura which gives me a window to get myself in the recovery position but this time nothing. My brain clearly decided to shut me down as the stress would short-circuit me altogether.

In A&E I was told “you are very unwell (I am sure that is a euphemism for you are about to peg out) and have to be sent up to a ward”.

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In A&E a psych liaison not working with me as for once I was deemed not to need one, made me a cup of tea so good that I said he must have been Scottish in a previous life. Then the delightful B appeared on the scene. She is another RMN & had realised I was in A&E. She is a force of nature. She dresses in a style I would call Afro-Eclectic. It was on this occasion a full length purple Nigerian dress over sparkly leggings and sequined trainers. The current hairstyle is 70s Afro. I love this woman. She is wise and does not hold back in terms of giving me a stern talking to. She has sat with me on suicide watch so often. She took time to sit with me and chat about anything and everything.

She actually made me laugh.

I had wanted to die.

This one nurse made me laugh enough to want to live, and it was not even her job to take care of me.

After that I got transferred to the Acute Assessment Unit in the part of it they call “trollies”. They are not trollies but I think it is just to be seen as a sort of transit centre – the Staten Island of Chelsea and Westminster.

There I found myself helping out a woman with dementia who could only speak French. The staff knew the boundaries but it helped to have me shout from the opposite bed “she is saying she has peed herself”. An enterprising and utterly magnificent Irish nurse was using Google translate so getting it horribly wrong which again gave me something to laugh about. I told her later she was totally getting through to the lady not because of Google but because she was a natural communicator.

From there I was moved precisely one bay along to where the “trollies” (which are in fact beds) officially become “beds” (which are exactly the same as the trollies). I do hope you are following this, dear reader. I spent the night there, or rather what was left of it. The trouble around all these moves, is that they create more opportunities for gaps in processes. Information from A&E had already gone astray by the time I got to be a “trolly dolly”. There were further errors after the move 50 metres away to the “non-trollies”. I had to be so on the ball about what had been said and agreed. I had had seven seizures, my brain was not in great shape but I can’t help think of those who for example had dementia or those whose first language was not English for example.

Early next morning, I was told I was to be moved to an actual ward.

As usual in the bed-hopping process, information had disappeared down chasms never to be seen again. This mean that I had to spend a night with no pain relief at all as the Buprenorphine patches which I was told would be prescribed were in fact not prescribed. That was one very long night. I did not sleep at all.

The next night was also rather long. There was it seemed, only one nurse on duty who was not even from our ward, to cover at least 17 beds which meant doing medication and trying her best to keep an eye on vulnerable patients many of whom had dementia. This is one of the specialisations of the ward I was on. And of course she quite rightly had to have a break leaving us basically on our own. One lady was very distressed and kept getting out of bed and heading off down the corridor. She was unsteady but, boy, she moved with purpose.

How can it be safe to have one member of staff trying to concentrate on dispensing meds in the middle of a ward where chaos was only ever a hair’s breadth away? Could this be why errors happen? (Rhetorical question).

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That is when we patients and one carer sitting with her critically ill mother stepped in. We patients monitored the movements of this lady and guided her back to bed whenever she took off, which was frequently.

By morning it felt as though we had done a night shift ourselves.

It was then staff started to confide in me about staff shortages. I believe one or two of them follow me on Twitter so they saw me as an ally.  I got so incensed about what they were telling me, I tweeted the new Secretary of State Matt Hancock. It was about 4am. Little did I know he was in the building at that time on a massive PR exercise as illustrated by his photo the next day with a crowd of smiley staff – at least six times more of them than we had on duty. He needed to be where the reality is not in PR land.

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One of the doctors told me another doctor had binned the happy clappy script and given the SoS some home truths, funnily enough saying exactly the same things I was saying in my Tweets about staffing levels. He had the guts to say what they were likely all thinking. Have his comments and courage been met with the gratitude they deserve? Somehow, I doubt it. As for you, Secretary of State, I hope you enjoyed your night with us, but please be aware that elsewhere in the very same hospital patients were having to provide patient safety as the sole nurse had had to take a break. Yes, digital is the future or at least a vital part of it, but if and only if the basics have been addressed.

The results on our ward were staff on short fuses though doing their very best, staff running from task to task, staff with no time to talk to patients, to comfort them, to reassure them – all sorts of things that used to define the caring professions. And as for errors? When plates are constantly spinning with only one person trying to keep them in the air, they are going to start smashing on the floor. Only these are not plates, these are people, and in that, I include the staff themselves. I saw a number of talented young HCAs and nurses running on passion and adrenaline alone. I know to my cost where that takes you.

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As for me, I got through what was a terrible week thanks to my Twitter family and my ward family. I also got by by being useful. I bonded with a lovely Moroccan lady who understood French so again I found myself helping out with the communication. She understood me anyway. Her daughter helped translate some of her observations of me. This 90-something felt I needed to be kinder to myself. She also said I had a big heart. She pointed to her own heart, then pointed at me after I stepped in to sort out the utter balls up around her discharge. I loved her too. I wish I could have known more about her life. I bet a lot of staff wish they could do the same, but how on earth can they even get as far as “Hello my name is” under these circumstances?

Let’s pause a moment to talk about discharge. Surely this should be a seamless process given that information about discharge date is generally available a couple of days in advance. This lovely lady was told she was going home, which she was desperate to do, at 6pm. By six she was already in her outside clothes, clutching her belongings in her hospital issue plastic bag. Her face was wreathed in smiles as she waited finally to go back to her own bed. Her daughter who had been interpreting, had gone to her home ahead of her to make sure it was all ready for her.

Then she waited some more.

Then more.

At no point did anyone try to talk to the lady.

After she waited in bed in her outdoor clothes for three hours I had had enough as I could see she was getting visibly distressed. I was told all was in hand as the daughter was on the phone etc.

We waited some more.

By this time, the old lady was so distressed, I was distressed to look at her as was the retired NHS employee in the next bed. Thankfully there was a change of shift and two total stars came on duty – one HCA who oozed common sense, and a nurse, a real nurse. They told me the truth. I always appreciate that. I can work with that no matter how bad it is. It turned out that a fax had been sent to transport who claimed not to have received it. Two things come to mind. One, why on earth is the NHS still using faxes when according to the new SoS we won’t even need to go into hospital, we will send in our Avatar instead? Secondly, did anyone read the fax report that would show whether it had been received? We were now 4 hours on and the poor lady was still lying there in tears, not understanding a word any well-meaning member of staff tried to tell her. She had only Arabic and basic French.

I was by this time being treated as some de facto carer though up to my eyeballs on Oramorph and in my PJs. I was asked to assure her in French the transport would be there in 90 minutes. I decided to make it two hours as I had an odd feeling about NHS timescales already.

She was happy enough with that. Then, ten minutes later – I think by now we were five hours after the time she was told she was going home – I was asked to translate that there was…err…a new development. There WAS transport but…it was in Peckham. I took an executive decision at this stage to suggest we explain to her that there was no transport for that night so if she had a good sleep, we could make sure she got home early in the morning. My neighbour asked me to tell her she was safe as she was among friends, meaning the other patients.

She then of course needed help to get back into a nightie, her bed tidied and basically given some TLC. I tried and failed to get any staff to do this as they were already hassling to arrange the transport for the next morning. The other patients arranged it. The two staff on shift were not responsible, they had been handled a massive comedy of errors by the shift before which consisted of one HCA with zero common sense and an agency nurse who had never been there before.

Once our lovely friend settled down to sleep I was so strung out I went out for a walk round the deserted hospital. In the end I went right outside to the Tesco over the road and bought donuts. It was after 11pm.

Next morning eventually transport came. I helped her back on with her cardigan and we patients stood to wave her off on her stretcher. She waved all the way along the corridor and did not let go of my hand until she reached the outside door to the ward. Tears were streaming down my face by this time.

There are a number of issues here but a major one is whether there is ANY effective communication between transport and the hospital proper.

Also, there was a distinct feeling that between the group of six patients, we had more skills of use than the original team present. There was a carer, one retired NHS employee who had 30 years experience, and there was my ability to communicate in whatever language that gets thrown at me.

But I was not there as a roving troubleshooter, though time and time again that is what I become, I was there as I was in great need myself:

Often I sat on my bed in tears. I was desperate for a kind ear. I was in a lot of pain so much so I was on Oramorph. I was sick to the core with fear over the DWP. I found my bank account had had some fraudulent activity go on which meant I had been cleaned out. Finally I had a perfunctory email from the Royal College of Psychiatrists advising me that “on this occasion I had been unsuccessful” blah blah, for a role on which I had set my heart. I could have made a real difference in terms of giving me a purpose and some peace of mind, and it played exactly to my strengths. After getting the news, it seemed at that point I did not even have any strengths. I felt like a punch bag. I recalled Orwell’s metaphor of a boot stamping on a face forever.

But no-one had time to talk to me, and as I didn’t want to upset my ward mates, I did most of my crying in the loo.

One spate of crying appeared at the same time as lunch. I sobbed into my Korma. Once again, I felt I wanted to die, but there was no-one to tell. They just do not have the time. I am not saying they don’t care. They care deeply. Why else would they turn up every day or night for more of the same? Are they being given the chance to use the skills in real caring and compassion, the values that made them enter the profession? Of course they are not. This is about plate-spinning.

If you enter Chelsea and Westminster Hospital you will think you are in a rather nice, if a tad over-the-top, hotel. There is a beautiful art collection, a luxury cinema, an indoor palm tree garden, opera regularly in the atrium, numerous dining choices and occasionally, should one be so inclined, one might purchase a cashmere pashmina from Johnston’s of Elgin or a new set of pearls.

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Until such time as these systemic issues i.e. the gaps in processes that lead to time-consuming games of Chinese Whispers, and adequate staffing levels are in place this showcase hospital will remain nothing more than a Potemkin’s Village. For the benefit of Mr Hancock, a Potemkin Village is defined as follows:

A pretentiously showy or imposing façade intended to mask or divert attention from an embarrassing or shabby fact or condition. Prince Potemkin, favourite of Catherine II of Russia, allegedly had villages of cardboard constructed for her visits round the country so she would not see the reality behind the facade.

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

Time will tell….

 

 

 

Life by someone else’s numbers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Housing – the missing link

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

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

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

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

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

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

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Turning points

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

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

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

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

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

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

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

DWP

Enter DWP Stage Left.

For whose Benefit?

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

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

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Then it happens….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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First do no harm.

 

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

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

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Faith in Vera – a tribute to a friend.

Who was Vera Rich?

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Poet, translator, activist, eccentric, Learned Kissagram, or in the words of a senior member of the Moscow Patriarchate “that EVIL woman”?

My Granny called her “the One who Sings”. Vera had taken to calling her at random and singing her translation of the Bahdanovic Romance down the phone at her. She knew my Granda had died and wanted to help. THIS I suggest was Vera.

Venus new-risen above us appearing
Brings with her bright-shining memories of love;
Do you recall when I first met, my dear one,
Venus new-risen above?

From that time forth evermore, skyward gazing
Seeking that planet I’d scan heaven o’er,
Within me a deep silent love for you blazing,
From that time forth, evermore.

But the time of our parting draws near, ever nearer,
Thus does our fate, does our fortune appear.
Deeply, profoundly I love you, my dearest,
But the time of our parting draws near.

In that far country, my love buried deeply,
I shall live drearily, yet, high above
I shall gaze on that planet each night, vigil keeping,                                                                     In that far country, my love!                                                                                                                                                                                                                                                                           Gaze upon Venus once more, when far distant                                                                               One from another, there mingling we’ll pour                                                                                   Our glances, let love flower again for an instant…

Gaze upon Venus once more!

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There is a lot of material online about Vera’s achievements as a poet and literary translator, but very little so far that captures what it was like to know her and be her friend. This blog is being written far later than it should have been but at last I have decided to describe impact on my life.

Snapshot from over ten years ago.

Vera had been ill for some time with breast cancer…..What was on my mind at that moment in my roller-coaster friendship with Vera, was not WHO she was, it was rather HOW she was, and then WHERE she was. Was she still alive? Had she survived the operation? If she hadn’t, I was going to have to start putting into place the wishes she had expressed to me regarding what she wanted to happen in such an instance. To summarise:

“If I am still alive but a vegetable, do switch me off before Elspeth and her Pro-lifers get near me. First, you must get a knife, not a fancy one, kitchen canteen will do, and put it in my hand. If not, I will not get to Valhalla”.

“Yes Vera”

“I want to be cremated as I don’t want the fuss. Give half to Ukraine and half to Belarus”.

“Yes, Vera”

I did not expect ever to have to put these plans into action. The day I found out she had died in her home with a copy of Under Milk Wood open beside her, my Dad had remarked “How’s Vera? I bet she’ll go on forever”. Sadly this was not to be.

However, though she had survived that operation only to die a year or so later, she was still giving me problems. I tried Barnet General furnishing them with the name Vera Rich, and giving her date of birth. After that produced no results, I tried other hospitals in London. No luck.

No-one had any trace of Vera Rich.

Where was she?

I sat for a while trying to think of a sensible course of action and in the end decided to go for something that should not in any rational universe, work. I randomly called the Belarus Embassy. She had had a chequered history there as did I, but generally, I felt they might have an eye on where Vera was and what she was up to.

“Hello. I know you probably can’t help but I am very worried about the poet/translator Vera Rich who is very ill, is meant to be in hospital and seems to have disappeared.”

“Ah yes, I don’t know personally but I know someone who does”.

At that I was put through to their First Secretary who said not only did he know where she was, he had seen her a couple of days earlier.

She was being looked after by the Belarusian community at the Church in Finchley.

I called, got her on the phone and after hearing about my adventures in tracing her she said:

I thought you KNEW. My name is NOT Vera, you Bumbaclot, it is FAITH but Slavs don’t have the “th” sound so I translated it into “faith” which of course, is Vera. And besides, you KNOW I don’t like to be found too easily. You never know who might be after me.”

How convenient that she also happened to live in Vera Avenue in Enfield. How very Vera for this to be so.

I was then regaled with tales of how she had fared in hospital. She had had a mastectomy as part of her cancer treatment. She was wearing the wig my mother had given her after her own cancer treatment had come to an end. It was remarked upon that Vera had not looked as well-kempt in years.

I have even managed to find online a photo of her wearing the wig in question.

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She had sailed through the op, and while recovering on the ward, had a feeling that she was meant to BE somewhere. That somewhere was Bush House doing a BBC interview. She sneaked out of her hospital bed, put her coat on over her nightie and headed off in a mini-cab. She told the driver to circle Bush House while she did her interview. At this point he was stopped by the police as his behaviour and middle Eastern appearance had alerted people to suspicious goings on near the BBC. She sorted that out, got back in the cab and was driven back. She installed herself back in her hospital bed and I am not sure anyone even noticed.

Her creative input did not end in hospital. Here is one of the poems she wrote at that time:

Dear Friends…
Accept my gratitude
(Not to send thanks would be most rude!)
For flowers, sweets, get-well cards, cake, fruit,
(My locker-top’s awash with loot!)
But one gift, though most kindly meant,
Rather frustrates your good intent;
Though you were right; if I could choose,
There’s no gift I’d prefer to booze!
But having just lost my left breast
I’m told “Sobriety is best” –
Or rather (not to tell a “story”!)
The Doctor says it’s mandatory!
At least till they remove the “drain”,
I have to keep both gut and brain
Free of all fluids that can cheer!
Yet (Woe is me! Alas! Oh dear!)
So many gifts have come in bottle
To tempt the palate and the throttle
(If you’ll forgive that archaism
For ‘throat’)! If only through the prism
Of vodka, “single malt”, liqueur,
I could perceive the world, my cure
Would, I am sure, progress much faster…
But here the Doctor must be master –
And he proclaims they are taboo!
Well, what he says, I have to do!
But oh, the misery implied!
Consider this, I might have died
Under the knife, so surely he
Could allow one wee dram for me?
No, he will not! And furthermore,
There is no guarantee my store
Of booze will last till I can leave
And take it home! For (please believe!)
All the “kind souls” who visit me
Are so weighed down by sympathy
That (seeing me denied one sip)
THEY all take a substantial “nip”!

And another snapshot:

I had been at her 60th birthday celebration at the Bahdanovic museum in Minsk. It had been an odd visit. I was already very ill without knowing it with PTSD. I had ended up staying with the family of one of the Belarusian diplomats in London. This had not been a good move on my part given that I was expected to be driven around and escorted at all times, and a programme of approved meetings had been arranged to which I was expected to adhere. I don’t think they quite got the British thing of just ambling around people watching and they certainly did not think I would be IDLY ambling. They seemed convinced that I would be ambling with intent.

I did however manage to escape their grip and get to Vera’s “do”. I knew she was well-respected in Belarus for her translations of Belarusian poetry particularly the “three greats” Bahdanovic, Kolas, and Kupala. What I did not expect was the extent to which she  was revered. I arrived early at the museum but already several hundred had gathered arms full of flowers. I managed to squeeze in at the back. She was up at the front in one of her “good” frocks – ie it was just about holding together –  being serenaded by a young Belarusian “bard” with a guitar. He struck up the opening chord of “Romance”. Vera was off. She sang it in English in her slightly wavery but more or less in tune soprano.

Then absolutely spontaneously, the crowd sang it back to her in Belarusian. It is the ultimate in compliments that they considered her translation into English to be almost, if not entirely, equal to the quality of the original. This is where her genius lay. She was first and foremost a beautiful lyrical poet who had the ability to grasp all the mechanics of the languages in which she worked. Her translations were more than literal interpretations of words, they were poetic works in their own right, retaining not just the meaning of the original, but the feelings, the imagery and the music.

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How it began:

How did this whirlwind of creativity and quirkiness end up in my life?

It was not long after the death of my colleagues in Belarus. I was still swept up in the swirling toxicity of the aftermath. I was trapped between the expectations of my employer that I would agree to promulgate a version of the truth that I could not stomach, aka lie, and my loyalties to the Belarusian “side” who were shouldering the blame but who were not to blame. I was trapped fighting daily the growing urge to tell the truth which would grow up with an acid-like intensity in my stomach, grow up my chest and get clogged burning a hole in my throat. To handle this, I was obliterating my feelings with alcohol and other forms of escapism such as disappearing from my office and spending more time than I should at the Embassy of Belarus.

It was the night of the Old New Year Party on 13th January. It proved to be a life-changing event for me in many ways. I met for the first time the stalwarts of the Anglo-Belarusian Society – people like myself who had been entranced in some way by Belarus without being able to understand why. It was the night I danced the polka with the Ambassador who later chased me down the corridor when I tried to leave at a “respectable” hour insisting “real Belarusians stay until the end”.

Earlier he had approached me and said “there is someone you MUST meet”.  I remember exactly where I was standing at this point in the corner by the window, my usual position at parties. Suddenly the crowd seemed to party & skipping towards me in black dancing pumps was this sparkly-eyed lady of a certain age in a black flouncy frock. I don’t remember much about what we talked about. I do know I was nearly flattened against the wall by the sheer force of her intellect, her personality, her sense of fun. at somewhere around midnight when the CDs had been brought out and Engelbert Humperdinck was crooning “Please Release me Let me Go”, appropriately as it turned out on numerous levels, that she had an asthma attack and took her leave.

However half an hour later, the door flung open and she pranced back in again having had a “second wind” of some kind in the taxi. She formed part of a hardcore group of survivors of Olympic-standard Belarusian hospitality sitting round a typical Belarusian table solving the worlds’ problems over yet more vodka and pickles until the early hours.

Daily life with Vera:

From then, she adopted me. I became a handbag carrier, the regular sounding board for her new poems and songs, and one of her Manifold Poets. I became the recipient of Vera’s legendary very early morning phone calls. I recall one at around 6 am when she asked:

“Have I GIVEN you my poem about Queen Victoria’s pain relief?” And without waiting to be asked she launched into it. Only Vera could rhyme Lithuania with “pain her”.

Victoria took marijuana
To dull arthritic pain
(So say the medical arcana
Of her imperial reign!)
And when the hair thinned on her pate
(Although this did not pain her)
She drank (to keep her crown on straight)
Birch-wine from Lithuania!

Sometimes she required more from me than listening to her latest opus. If the call opened with a harassed-sounding Vera demanding “what are you DOING today?” I knew I was in for something unexpected and more than likely bizarre. I ended up pretending to be a journalist writing a review for her of an exhibition about diamonds and heading for Kew to review an exhibition of glass sculptures. I accompanied her on multiple visits to Wetherspoon’s to which she was inexplicably devoted. She knew exactly when the Curry Nights and Pensioner Deals were on in every single branch in Greater London. One was doing a promotion of Ukrainian beer so she got me to ring them to arrange a photo shoot of herself sitting with a few pints. I had to pretend to be her PA. On one occasion, I was summoned to her chaotic house in Enfield. Vera was a hoarder and it was incredibly difficult to get her to part with anything despite many of us trying over the years. I was not given the nature of my mission. It turned out to be cutting down a bush in her garden. I was worried about my clothes but she had a solution. I was presented with a flouncy cocktail dress which had belonged to her mother.  I got stuck in with my secateurs dressed as though I was at a 1950s garden party. A Belarusian arrived with an axe. He started on the trees. He made us flower crowns. Vera drank wine and serenaded us throughout and then we finished with a bonfire and an Indian takeaway. Just an average day with Vera.

What she meant to me:

Only now she has gone do I fully realise the importance of Vera’s friendship. Those years were chaotic for me as I descended into the Hell of PTSD and addiction. Vera was one of the few constants. She did not judge. She was just there and accepted me no matter what state I might have been in. A few years after she died, a mutual friend said she had talked to her about me she had said “Alison will get well but it will take a long time. We all just need to be there for her until she does”.

I miss her.

I wish she could see what I have been able to achieve despite illness. She would have loved to have gatecrashed my presentations, and would have I am sure, convinced me to allow her some airtime to entertain with songs about the NHS. I can see her with the NHS Graduate Scheme whirling like a dervish round the ballroom in Leeds where we hold the Welcome Event every year.

She would have critiqued my writing and adopted any of my friends who showed a poetic bent.

She would have had things to say about our plans to publish a book of her translations of Belarusian poetry to coincide with the 10th anniversary of her death.

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I feel her presence a lot and it seems at times I get messages from her. Not long after her death, I was browsing in a charity shop in Notting Hill when a bookshelf collapsed above me. I was hit on the head by a book which I picked up. It was Vera’s collection of Belarusian poetry in translation “Like Water Like Fire” .

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Eternal Memory:

Some of her ashes are in accordance with her wishes near the grave of Shevchenko in Kaniv, Ukraine. The rest are interred in the wall of the beautiful wooden church in Finchley built for the Belarusian Greek Catholic congregation of which she was a devoted member. The spot is marked by a beautiful carving created in the Ukrainian city of Lviv, in her memory. She is portrayed as a Princess in a tower watching as St George dispatches the dragon. (She was born on St George’s Day). In fact, she would have taken on the dragon herself. She would have assaulted him with the full power of words, her poetry, her songs, her thoughts on all and sundry.  Mesmerised, the dragon would have slunk off defeated. She would have loved her place in the wall of the Church in Finchley.

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She would have loved that some of her ashes brought her back to Ukraine to rest near the grave of their national poet Taras Shevchenko. This is truly a testament to the deep respect and love for her in Ukraine.

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Most of all, however, she would love the affection, and often humorous memories, her friends hold of her in our hearts. There were many obituaries and given how hard it is to sum up Vera, her life and work succinctly, this from Judith Vidal Hall from Index on Censorship is, I think, came closest to capturing her essence.

“But there was courage too; loyalty as well as determination. In many ways she had, more than many, outlived her Cold War era: she spent her youth battling the tyranny of the Soviet system; her maturity was spent caring for the victims of its residual legatees in Belarus. They will miss her, increasingly, for there will not be another like her. I shall miss her very particular brand of extreme eccentricity combined with humour and the touch of genius.”

And this genius in clear in this translation of the moving poem “Testament” by Shevchenko.

When I die, then make my grave 
High on an ancient mound,
In my own beloved Ukraine,
In steppeland without bound :
Whence one may see wide-skirted wheatland, 
Dnipro’s steep-cliffed shore,
There whence one may hear the blustering 
River wildly roar.

Till from Ukraine to the blue sea  
It bears in fierce endeavour
The blood of foemen — then I’ll leave 
Wheatland and hills forever:
Leave all behind, soar up until 
Before the throne of God 
I’ll make my prayer. 
For till that hour 
I shall know naught of God.

Make my grave there — and arise,
Sundering your chains,
Bless your freedom with the blood 
Of foemen’s evil veins!
Then in that great family,
A family new and free,
Do not forget, with good intent 
Speak quietly of me.

I will not forget, we will not forget, and we will never cease to talk quietly of her (and celebrate as loudly as we can) all that she was and did. 

 

Read more:

Obituaries

https://www.indexoncensorship.org/2010/01/obituary-vera-rich/

https://www.augb.co.uk/news-page.php?id=190

http://britishlibrary.typepad.co.uk/european/2016/04/vera-rich-in-memoriam-1936-2009-.html

Works

Translations and own poetry

https://allpoetry.com/Vera_Rich

Comprehensive bibliography including articles on Human Rights for various publications.

https://wikivividly.com/wiki/Vera_Rich

 

 

 

Hidden truths, unspoken lies.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

5. Responsibility and accountability was deflected

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

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

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

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

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

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

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I should know.

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

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

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

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

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

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

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

survivalcentre

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

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

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

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

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

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

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

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

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

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

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

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