When I first heard about Oxevision, at a national meeting, I couldn’t have dreamed of the year that would later transpire for me: swirling into chaos that eventually washed me up on the shores of a section 3, hospitalised, and staring into the gaping jaw of visual-based surveillance, that I had spent a year working against as a ‘moderate’ – as all social movements have gone since the beginning, we all have different approaches to tackling the problem. I chose my battleground to be within the system itself: but when you find yourself under the system again it creates complications. I am ‘just a patient’ here, in the words of my RC. Despite having kindled the principles and standards they are obliged to follow, even the policy changes in my own trust, despite ten years of expertise working within the system, I am reminded that coproduction starts with us, on the ward. The big words and fancy conferences, all the times in my career I have been shown off like a shiny token some magpie remembered to pick up along the way and displayed like a medal – ‘we did it! we did a coproduction!’ – which they did, when it is convenient, palatable, and easy for them. I am not paid here: and my battle does not end. When you see a system that is broken and choose to intervene for harm reduction, you do not stop caring the moment that the clock stops. The wage never matches the work, and deliberate decisions to exclude us and not hire us at higher bands are identified as ‘gaps’ with no accountability or ownership, as if the organisational quilt was not weaved by executive hands.
As lived experience professionals, we barely even get the respect that a professional gets, let alone equity of the employment experience. At times I have even spent more hours on admin and fighting for justice while sectioned and signed off sick, than I would be at work.
Systemic injustice often is too big to look into the face of – we have to take it in small bites because it is too much to digest at once. It is when we are most unwell that we find ourselves at the knife edge and staring face-first at injustice: the time when we are least equipped to fight it. Yet, we endure.
I live walking across two lines, patient and professional, somehow too knowledgeable and experienced to be a patient, but not a real professional either because I didn’t go to university or base my decisions off a medical model. Often my role is misunderstood: it’s seen as advocating for the patient. And yes, in some ways it is – I am predisposed to the patient’s views, where I often feel as though I am sitting alone. I see it more as becoming a bridge, an interpreter or translator as to how each side sees each other, and that means recognising the viewpoints of staff as well. I would make the argument that if I need to be hired explicitly to advocate for a patient perspective, then this is the system in Freudian slip: it directly contradicts the idea that their decisions keep the patient at the heart of it (patched up if my band 5 self intervenes, somehow?)
Certainly, in my months in hospital, I have seen operational decisions dressed up as clinical ones. I have directly challenged policy and procedure (especially standards and principles) which I understand intimately and worked on. I have not been listened to, over and over and over again.
Just a patient, perhaps. The consent form I was given (twice) on Oxevision did not follow its own wording of providing an information leaflet without my reminder, and it still says it’s used constantly in seclusion – which is not only out of compliance with national principle and guidance, but it’s also inconsistent. Clinicians seem to understand the basic principles of individual risk assessment and working in a person centred manner until technology gets involved.
Sometimes I feel like some kind of biblical figure holding back the waters of injustice. Catching medication errors, reminding endless rhetoric that it shouldn’t be my job to resolve, and finding myself in spaces where people genuinely don’t know what to do with me, because there wasn’t a policy written for the predicament I find myself in. What exactly do you do with a patient who’s right and in some ways knows more than you do?
Scapegoat their support network, throw a safeguarding at everyone except you, ignore the ones with your name on, and push the patient out, in my experience. Holding the knowledge I do has had me treated as more dangerous than actually aggressive patients. I was told for months that they couldn’t force someone who was abusive towards me to move: and then I watched on as they authorised and completed my transfer against my will, within 24 hours.
Four weeks I have been under the metaphorical gaze of Oxevision. For something I didn’t grasp entirely until I was here: even when it’s ‘turned off’, it still looms above me. I have to trust that staff follow policy, procedure, and standards, to trust that they’re not turning it on. And all evidence has endlessly reminded me that they simply do not follow these consistently, and sometimes not even at all. So, why exactly am I expected to be reassured that they will get this one right?
What should be is not the same as what is. There is no winning in a situation like this: policies that never do materialise into my hands are used to justify actions I know aren’t in line with national standard. That’s when they bother to even grace me with a justification, that is, because often they don’t bother. Yet when I pick up the policy-daggers they have used to restrict and to hurt me, and turn them back at proud professionals, holding them to account, somehow they don’t like it so much anymore. Policy goes both ways – except that it doesn’t. I can send detailed and descriptive emails correcting, protecting, policy-referencing: that doesn’t mean I get a response, because they have no interest in proving themselves to someone who is powerless to fight back.
The experience I think we’ve all had at some point as patients: loose-handed justifications as to why their noose is fine, actually, then when you ask a question they don’t want to answer, they just… don’t. Deflecting, defending, because the threat of a lawsuit is of greater concern than the threat of our own deaths.
So – I am expected to rely on a system that I watch shatter in front of me on a daily basis, to make good decisions about surveillance, while I see burn-out approaching in the ember-eyes of those providing care for me. They are not empowered to care, enough. They are not resourced, enough.
But anything ego-dystonic, even procedure, that I place, pleading, into their inboxes and their ward rounds, is simply cast aside in favour of the policies and law that they can use to justify a decision I suspect they would have made anyway.
I’ve worked with the NHS for years and I do not trust it. Professional colleagues have met me with confusion when I express that. They ask why I work within it. My response is usually along the lines of “Harm reduction? Why else would I be here? You think that I believe in a system that
I’ve watched kill friends and family?” The unspoken question: if you think the system works fine, do you think those I’ve been bereaved by were liable for their own deaths?
So we put together these attitudes, with a camera (that they usually don’t even call a camera) and a for-profit private company.
I’ve never been great at maths, but does that not definitively and clearly equal disaster?
I have given up on patching the leaks on a healthcare-plumbing system that relies on my kindness and work to sustain it. Perhaps if I stop questioning them or struggling against them, that will place me in a safer position. Feels familiar, as an abuse survivor.
If the NHS was my husband, we would have divorced long ago. People would perceive their actions as abuse – yet instead, I am referred, coerced, back into their arms, by people who know my story and what I have lost at the hands of healthcare.
As I’ve said a thousand times, at inquests, roundtables, meetings: surveillance is not safety
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