It’s taken a long time for us to put it together but we think it’s something that needs to be heard.
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 shoelaces and belt off her, then her bra. They rifled through 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 through 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 nowhere 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
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