Patient led care is mere lip service!

The principles of patient-led care, a concept rooted in the recognition of lived experience and the belief that I, as a patient, should have a meaningful voice in guiding my treatment decisions, yet my journey through the mental health system has revealed a stark betrayal of this promise. Far from empowering me, the system often reverts to top-down control, where rigid adherence to the biomedical model equates stability with compliance and casts any questioning of pre-determined treatment plans as a sign of being unwell or defiant. This institutional bias has profoundly shaped my experience, undermining my autonomy and reinforcing a pharmacological approach to recovery that I find both reductive and harmful.

A recent encounter with my former doctor exemplifies this systemic failure. When I refused a proposed medication dosage and sought clear reasons for the recommendation, my inquiry was met with dismissal. Rather than engaging with my concerns, my doctor labelled me as paranoid, and having poor understanding of my diagnosis. This response not only invalidated my perspective but effectively punished me for asserting my right to question. This incident lays bare the deep-seated institutional bias that equates pharmacological treatment with recovery, sidelining alternative approaches and dismissing the possibility of medication tapering. My attempts to advocate for myself, through advanced statements or requests have been consistently ignored or rejected under the guise NHS Guidelines. This is not patient-led care; it is lip service, where treatment decisions are made in advance, without my input, and enforced with an iron grip.

My Section 17, is apparently contingent upon my continued compliance with medication? Or is it? This condition overrides clinical judgment, creating an incentivised process where the care team feels pressured to conform to a narrative that demands my submission. Submit I will not. Not now, not ever again.

This dynamic breeds profound distrust in a system that appears designed to suppress dissent and, at its worst, enables a form of sadistic control over patients like me, who have endured forced medication and coercive treatment practices, far from fostering recovery, often inflicting iatrogenic harm, compounding the trauma of those already navigating emotional challenges.

I am acutely aware that my experience is not unique. The risk-averse protocols prioritise medication compliance over real-world evidence of stability, trapping countless patients in a cycle of disempowerment.

Reform is urgently needed to shift these protocols toward a model that values observable behaviour and lived experience over compliance metrics. The system’s reliance on a postcode lottery further exacerbates inequities, with access to innovative treatments like psychedelic-assisted therapy, my preferred approach, denied outright. This denial is yet another indication that patient-led care remains an unfulfilled promise, constrained by institutional inertia and geographic disparities.

I am fighting for my right to pursue psychedelic-assisted therapy, a treatment I believe could address the root causes of my distress in ways that conventional pharmacology cannot. The blanket rejection of this option underscores the system’s refusal to engage with patient-led innovation. True reform would dismantle these barriers, prioritising individual agency, equitable access to diverse treatments, and a holistic understanding of recovery. Until then, the mental health system will continue to marginalise those of us who dare to question, leaving us lost in a labyrinth of control and compliance.