Product Placement: Out of Sight and Out of Mind

This is jointly written by Keir Harding @keirwales and Hollie @Hoppypelican.  Please stay safe reading this.  It contains descriptions of self harm and restraint and allusions to abuse.

It’s taken a long time for us to put it together but we think its something that needs to be heard.

A story…

She places her hands against the cold window and peers through the grill into the twilit garden; the grill that traps her, obscures her view of the outside world and reinforces her cage.  The reds and pinks of dusk bleed across the manicured lawn; the progression of day to night being the only consistency amidst the chaos she lives within. Along the corridor someone is still screaming.  She knows the staff have tired of it because she hears the shouting and clattering of the care starting.

She remembers arriving; the initial feelings of safety, respite and containment that disintegrated over the days and months.  It was substituted with anxiety and frustration.  Still she wasn’t allowed to leave the cage that exacerbated her distress and eroded her last shreds of hope and resilience.   For a time she’d wanted to die but somewhere lurking in her subconscious was a desire for something to be different.  Even when things were at their darkest; when she’d swallowed down the tablets and knocked back the vodka, even after she’d written the note something inside her wanted to keep her alive.  She phoned for an ambulance even though she felt sick and ashamed. She knew she was wasting resources and she knew she was undeserving, but it took so much to pick up that phone. Utterly overwhelmed by sadness, self-loathing and desperation she sobbed as she told them. Drowsy and nauseous and to a total stranger, she gave away her darkest thoughts.  By the time she’d finished she just wanted to be looked after.  She just wanted someone to care.

When she got to the ward the ‘care’ started.  She told them she wouldn’t try again but they took her shoe laces and belt off her, then her bra. They rifled though her belongings like a Primark sale bin and anything deemed a ‘risk’ was confiscated; no explanation. Every night for years she’d listened to music to keep the worst of the thoughts at bay, but now that she was being cared for her headphones were snatched away, no recommendation of how else to keep out those intrusive barbs.  She was told she’d been silly.  She was told that everything she’d done was just to get attention.  She was told that the bed she had should have been used for someone who needed it. She was told she wasn’t ill, that it was just ‘bad behaviour’. She cried as she tried to shrink into the corner of the room.  The warm, wet tears dropped onto the blanket she’d pulled over her head.  In her mind she shrunk down like Alice in Wonderland and cowered within the Airtex cocoon.  After 15 minutes the blanket was ripped away and she was told she was attention seeking again.  It didn’t feel much like care, but they ‘cared’ for her every 15 minutes until the end of the night. The unlocking door and flash of torch, a reminder 4 times an hour that they were there, ‘caring’, watching and depriving her of sleep, the thing she longed for most.

The day came slowly with a murky light turning the dark into grey.  She’d watched every minute tick by, as between the 15 minute door clanging of the care and the shrieks of the others who were living in some other reality, sleep hadn’t come near her.  The energy of the other patients and the sudden noises frightened her.  This was not being looked after.  This was not what the care was supposed to feel like. She noticed that the other people on the ward seemed to have a very different version of care to what she was receiving. Having gone through life feeling like a pariah, this augmented and reaffirmed everything she believed about herself being different and not belonging in the world.

Conscious of her drooping jeans and laceless shoes she shuffled to the office.  She knocked gently and saw someone in a uniform catch her eye and look away again. This happened often. She knocked once more and waited for someone to come to her.  After she’d waited a while someone came along with a clipboard to give her the 15 minute care.  She explained that she wanted to go home and was told she couldn’t.  She told them that she felt different now, that she didn’t want to die, that she just needed to sleep; she wasn’t getting that here.  They told her she couldn’t go home.  She turned to walk towards the doors. She pulled and yanked at the stupid handle that you have to claw onto, it rattled but didn’t yield. They shouted that she needed to stay.  The doctor needed to see her; they made it clear if she didn’t behave she’d be made to – detained and totally stripped of liberty and dignity.

She felt helpless, like she had so often before.  She felt like a puppet; those in authority directing her moving parts and holding the control, just like before.  She was told that she’d manipulated her way into hospital and was now wasting people’s time.   With her face calm and her heart screaming, she walked to the toilet and wailed a piercing scream that vibrated though her head but didn’t make a sound.  Once again it didn’t matter what she wanted, others would make her do things, once again she didn’t matter, she was worthless and nothing.  She rooted through what was left of her things, biting the little plastic buds off the end of a hair-grip and dragging it down her arm; it brought nothing. She frantically searched for something else and found a lip balm tin.  She didn’t remember taking the lid off and jamming it into the doorframe to bend it and create a point.  She only remembered the noise stopping when she pushed the shard of metal into her leg.  She only felt that the world was right when she treated herself like the piece of shit everyone else had, when she punished herself like she was told she deserved.  She only felt like she had some control again when the pain blotted out everything and the blood let the agony flow away.

Within 15 minutes the toilet door opened, someone shouted “For fuck’s sake” and an alarm started going off.  In the tiny space of the toilet, three men she didn’t know ran towards her.  Just like before, they pinned her arms.  As she thrashed about they pulled her to the floor; she was no longer in hospital, she was transported back to that terrified child again.  She was pushed down, face to the floor, arms held, the backs of knees knelt on. She couldn’t move, couldn’t breathe, and as she fought to escape she felt her trousers being pulled down.  She screamed as loudly now as she had then.  She knew how this would end.  Broken, hurt, degraded. This pain was different.  This time a needle penetrated her buttock and as they held forced her into the floor she felt the wave of numbness wash over her.  Before everything turned to watercolour she heard someone saying that they knew this would happen.

Reality started to creep back as her body thawed but the world around her still felt hazy, like her head was full of candyfloss but no where near as sweet; this was due to the benzos she’d been forced to swallow with a thimble full of water. Made to open her mouth dentist wide and stick her tongue out and up to make sure they’d gone down. She still wanted to leave.  And they still wouldn’t let her.  She explained that she’d be okay.  They told her that people that cut themselves aren’t okay. She told them she’d only done that because they wouldn’t let her leave.  They told her she had to stay until she wasn’t going to kill herself and could keep herself safe.  But she’d thought about suicide every day for the past 4 years.  She’d cut herself carefully, with her special blade every day for 4 years.  How was she going to stop this now?  How was she going to stop it here?

She didn’t stop.  The urge to cut and get some sense of control back became overwhelming.  Without having her blade with her she did what she could to get the same relief but it became harder to do. They watched her.  They followed her.  After she smashed apart the Perspex covered display board and cut with the shards they stayed within arm’s length.  After she ripped her pants apart and tied them around her neck in the toilet she had to piss with the door open; underwear confiscated and hospital paper pants instated.  Every time they did more to ‘care’ for her she had to do something more frantic, more dangerous and with more of a chance of killing her.  Every time she did this, they did more and more to make sure she couldn’t do anything to hurt herself.  Every time she did this, three of them would hold her down, just like the men had when she was young; like them she could feel that they hated her. Every time she cut herself, they reacted as if she was cutting into them.  They couldn’t go on like this…

And they didn’t.  They told her that her personality was disordered and that she needed specialist treatment.  That her reaction to the ‘care’ was inappropriate.  That she needed to go to a specialist unit where she would be treated to get better.  She did not want to go, but to them she was voiceless, she was going, and would probably be gone for a year. Ripped away from everything and anyone she ever knew.

She’s been here 2 years now.   Things aren’t much different.  She can’t cut with anything so she tries to tie things around her neck a lot more.  She never did that when she was at home.  She’s on more medicine which is supposed to help but instead makes her drowsy.  She bothers people less when she’s sleepy.  She’s not got the energy to exercise, which she wants to do because she’s 3 stone heavier than when she arrived.  The specialist treatment she was supposed to get has turned into seeing her nurse 1:1 for an hour once a week, something she got more often at home. These sessions are not tailored to her needs and she is jammed into boxes she does not fit in; square peg, round hole.  She wants to go home but they tell her she isn’t safe.  She needs to stay in the specialist placement.  It doesn’t feel special.  She doesn’t feel special.  She feels likes she’s been forgotten and in a sense she has.  If any of the staff that worked with her previously think of her, they feel relief when they remember cutting the cord from her neck.  They think of their relief when they remember that she’s gone, not their responsibility, not their risk to contain, not their problem.  They never think of the time she looked after herself by phoning an ambulance.  They never remember that the things most likely to kill her began after they started ‘caring’ for her.

__________________________________________________________________________________________

Between us we have worked in  and received mental health services for about 30 years now.  Sadly we have lost count of the number of people who have lived the exact same story we’ve described above.   People get stuck on an acute psychiatric ward and staff believe that the only answer is a specialist placement, even if no therapy or more intensive support has been tried in the community first.  Because “Specialist Unit” is not a protected title and doesn’t come with any accompanying standards, places become such a unit by changing the sign above their door.  People are then compelled to go to these non-specialist ‘specialist placements’ to receive little more than warehousing.  Unsurprisingly things don’t improve.  Unsurprisingly, the promised one year stretches into two or more.  Between a private provider who makes money from people being on their unit, and an NHS team who is afraid something dangerous will happen and they will end up in court, there is no incentive to bring people back home.  The cost to the NHS is extortionate.  The cost to people’s lives is immeasurable.

It’s  World Mental Health Day as we publish this.  On this day, while we think of how it is good to talk and that 1 in 4 of us (at least) will experience mental health problems, let’s try to remember some other people too.   Let us try to remember the people for whom we pay £200,000 a year to keep out of sight and out of mind.  Let us consider whether life at all costs is worth forcing people to live in hell.  Let us ponder whether our care can harm people.   Those who get diagnosed with personality disorder are notoriously excluded from NHS services, either by not being allowed through the door or not being allowed out of one far away.  Recently Norman Lamb spoke of how we value containing people over their human rights.  Certainly it seems better to have them locked away so it looks like we’re keeping them safe, regardless of the evidence and NICE guidance that suggest we should do the opposite.  In a 21st century healthcare system we cannot continue with this way of responding to people who have lived through trauma.  We will not have a 21st century healthcare system if we continue to pay £1,000,000 a year to enforce the safety of 5 people.

Keir and Hollie work  to help organisations avoid the situation described above, via beamconsultancy.co.uk 

Do leave us a comment or catch us on twitter and let us know your thoughts.

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17 thoughts on “Product Placement: Out of Sight and Out of Mind

  1. This is incredibly powerful. It’s so important for us as professionals to reflect on what constitutes good care and what we say is good care. Thank you so much for writing this, it’s definitely given me a lot to think about.

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    1. I was diagnosed wth borderline personalit disorder. PTSD SocialAnxiety Phobis BiPolar but anytime anyone hea bpd. It like we hate you you attension seeking. We dont want to deal wit YOU😫😖😧😢😢😢😤

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  2. This is very powerful, eye-opening and heartbreaking. We have such a long way to go, and raising awareness of issues such as this is so important. Thank you for writing and sharing.

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  3. Thing I noticed is that restraint by the male nurses caused flashbacks to previous severe trauma.

    Attempts to control behaviour to minimize risk had the opposite effect in this instance.

    Pre-emptive strikes and micro aggressions. There were people who were patronizing and condescending: ‘silly’ self harm. This is not an innocent remark. It is a calculated one to depersonalize to Ward regimen.

    Staff seem to be mindless, blind, wilfully blind. ‘For fucks sake’ reveals that patients should neither be seen nor heard and certainly not causing any trouble. Poor motivation. Not wanting the trouble of a suicide seems to be the over – riding concern rather than taking any interest in what might help the woman get better.

    Sleep deprivation is also a severe harm.

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  4. Once again, we’ll written and needed saying. When ‘care’ isn’t caring but retraumatising we have gone badly wrong. Where is the humanity? I’ve met plenty of patients who have had more harm done to them by mental health ‘services’, compounding earlier traumatic events in their lives.
    Thank you for shining your light into these dark places.

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  5. The system of care is, maybe not completely broken, but very dysfunctional.

    I could have been managed in the community, but the home treatment team was under staffed, and I couldn’t tolerate the ever-changing, always late, don’t really want to be there visits. As someone who is a sensitive soul, and needed some safety from suicidal thoughts, I was placed on a private ward that was (in their words) paid to keep me safe and give me pills, not be therapeutic, with a handful of other women being similarly treated. The staff seemed over worked and under trained, resorting to threats and sarcasm to cope with the emotional demands of the work. It was really stressful. Generally when I’m stressed I go for a walk or play the piano or make jewelry. None of these adaptive behaviours was available to me, so I asked to go home, and when that didn’t work (despite being a voluntary patient) I cried, got very irritable and started shouting at people, which made the staff think I was becoming more unwell. When the funding NHS trust visited after four weeks, they didn’t believe I could go home, but thankfully they believed me that I needed to be moved.
    I can see just how a spiral could be set up out of which there is no way out.

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  6. The reality is 70% of the mental health budget is wasted or spent on in facility care, and addiction in the community on CTOs– that takes them all back to the same bins every 12 to 18mths for trying to escape what very few can cope with, or live on,- or like,- to 56% of non compliant -, not/ never “mentally ill” kids, in the most– majority non believing people- who all report adversity and violence upon them- a report that goes nowhere- gets no answer, apologies, or any response whatsoever from anyone in the mental health industry- silence is what all their victims get from them when they complain- or some more poison or a gorilla holding them down for it- some more extra poisoning- for making them feel the guilt they’ve all buried about what their doing to people.– they either strike out at the messenger- or do silence, cause they know they can’t answer, with honesty, or decency, or without feeling the shame they try not to feel.- I thinks its called denial.

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  7. Anyone seen or know anything about this?

    Whether restraint amounts to inhuman and degrading treatment under Article 3 may also depend on the characteristics of the person concerned. Age, sex and health will be relevant, as will the physical and mental effects on the person restrained.[226] Particular vulnerabilities of which the detaining authorities knew or ought to have known, such as a history of past physical abuse, may therefore contribute to a finding of an Article 3 violation in the use of restraint.

    https://publications.parliament.uk/pa/jt200405/jtselect/jtrights/15/1511.htm

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  8. Poignant and heartbreaking. As a Health professional who has worked in mental health, and on the other side too…. This is such an accurate account of institutional care for people suffering with their mental health. There is some great work being done out there, but so much more is needed to change attitudes towards mental health and restore some sense of humanity and compassion in the system.

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  9. this is an incredibly sad story and triggered a lot of bad memories for me when I first received my diagnosis of BPD in 2005- I found it a diagnosis which meant excluding me from compassionate care. I even lost my name and became a diagnosis- all the crisis team notes began with “this person has BPD” not “name” called. I was judged to be a trouble maker and attention seeker. I felt punished and let down. I suffered immeasurable harm at the hands of community mental health workers, A&E department (ejected forcibly and thrown onto the pavement by a main road at midnight on a friday night)., police- handcuffed and head forced down the well of the backseat and called a “nutter”. I kept telling people that I have been punished all my life through the traumas I had suffered and why did they think that punishing me would help get me better. Compassion soothes and helps the self harm stop. being judged makes you worse.

    I was lucky then to receive true compassion from Rethink Services and a caring maverick CPN and my healing started. I now work for secondary mental health services and can see that attitudes have changed to a greater degree but I think the stigma of BPD is lasting in the mind of the general public.

    Thank you for being brave enough to tell your story.

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  10. Are the staff caring and thus angry at her self harm? Is the woman actually a child? Does the child not understand the anger of the adults?

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  11. Just because someone struggles and finds it difficult to cope, and is given a diagnosis of ‘personality disorder’ doesn’t mean that the person who made the diagnosis would have coped “majestically” with the negative experiences themselves.

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  12. Staff trying to eliminate their own fears of seeing death, something which the victim of this blog has already seen far too much of for a young girl – and it was her mum. Staff need to work with children with mums in intensive care before being given responsibilities.

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