When people ask me why I have lost trust in the mental health care system and why I am adamant that significant changes are necessary, I can recount two decades’ worth of heart-wrenching experiences that have left me feeling disillusioned and let down. From the moment I was diagnosed with Bipolar disorder, a condition that was completely foreign to me at the time, I was thrust into the world of mental health care. It was a frightening and disorienting time, but I put my complete faith in the care team, obediently following every directive and treatment plan they prescribed.

Having been in the mental health system for so long, I’ve experienced varying levels of care – some genuinely supportive, while others left me feeling utterly abandoned and abused. As the negative experiences began to outnumber the positive ones, I couldn’t help but question the adequacy of my treatment. Countless battles had to be waged against the system due to major mishaps in my care, often stemming from communication breakdowns, before I finally received the correct diagnosis of autism.

My faith has been shaken repeatedly. The patronising and dismissive manner in which I’ve been spoken to has not only chipped away at my confidence but has also added an unbearable weight to the daily struggle of managing my condition. It’s disheartening to realise that the care I receive often feels inadequate and unsuitable for my needs.

Look Dez, you’ve tried every combination of medication available – what else do you want us to do?” This is the last thing you want to hear from the person responsible for your treatment. It makes you question whether there’s something inherently wrong with you. Is it me? This is just one example of the negative comments I’ve had to endure. The continuation of such interactions has led to an overwhelming sense of anxiety that builds for every appointment.

When I began to advocate for myself and ask questions, my inquiries were always met with hostility. It was almost as if the response was “How dare you question me? I am the doctor, and you are the patient – I know best“ attitude. I was compelled to bring others with me to appointments to validate my concerns, as the treatment I received made me doubt my own judgment.

After years of filing complaints, which I mostly escalated to the Patient Advice Liaison Service (PALS), I finally had the opportunity to meet with the head psychiatrist, who suggested, “Let’s go back to the start“. This pivotal moment ultimately led to my autism diagnosis. *I highly recommend the PALS service*

I firmly believe that if I hadn’t spoken up about the issues over the years, I wouldn’t be on the path to understanding my condition as I am now. Many of the complaints I raised could have been taken further, but that was never my intention – I only wanted the right treatment, the treatment that the services are supposed to provide. Hearing the phrase “we are sorry you slipped through the net” more than once makes me wonder how many others have fallen through the cracks, and if I hadn’t spoken up, where would I be?

At one point, I was threatened with removal from the Community Mental Health Team (CMHT) if I didn’t contact a care coordinator regarding a missed appointment – an appointment that had already been rescheduled with the secretary! Unfortunately, such issues were all too common. The communication standards within a service designed for mental health care were shockingly inadequate.

A care coordinator within a mental health service plays a crucial role in coordinating the care and support for individuals with mental health needs. This includes facilitating access to appropriate services, coordinating treatment plans, advocating for the patient, and ensuring continuity of care among various healthcare providers. Additionally, they often provide support, education, and guidance to patients and their families throughout the treatment process.

I had a revolving door of care coordinators over the years, and some were clearly ill-equipped for their roles, lacking the necessary training and understanding. Looking back at my care plan (which was around 5/6 years ago shown above) it should have raised red flags when I discussed how I cope with extremely challenging periods – I now understand to be sensory overloads or meltdowns. But instead, it was just typed up and filed. How is this care? If I rang an emergency service during a time of crisis and told them that I was going to overdose and isolate, would this raise concern? It’s scary to feel that I was under such a person and service for my care.

A mental health care plan is a tailored document designed to support individuals dealing with mental health issues. Typically created in collaboration with a mental health professional, it outlines a person’s specific needs, goals, treatment options, and strategies for managing their mental health. This plan often involves input from the individual, their healthcare provider, and sometimes family members, and it can include details about therapy, medication, lifestyle changes, and support networks.

I am not sharing this to vilify the mental health sector or embark on a witch hunt, but to underscore the urgent need for substantial changes. Every time I raised a complaint, it was not out of pettiness or for trivial matters, but a cry for help. Struggling through each day is challenging enough without feeling like the very people meant to support you view you as a problem – a sentiment that became all too apparent at times. 

So, how can we ensure that the mental health care system truly serves its purpose of providing support and understanding to those in need? What ethical responsibilities do healthcare professionals have to ensure they are treating individuals with dignity and respect, regardless of their condition? Where does being neurodivergent fit into this category and is there sufficient training to understand and cater for this type of treatment and care? And how can we empower individuals to advocate for themselves within a system that often dismisses their concerns? These are the questions that need to be at the forefront of discussions about mental health care. How can we create a truly patient-centered system, where individuals feel heard, supported, and empowered in their own care?

The impact of these experiences goes far beyond my own story. It raises larger questions about the ethical responsibilities of the mental health care system. How do we ensure that every person receives the appropriate diagnosis and treatment, without having to fight against the very system that should be providing care? How can we hold mental health professionals accountable for their actions and ensure that they are constantly striving to improve the care they provide?

Moreover, how can we address the systemic issues that lead to breakdowns in communication, inadequate training, and dismissive attitudes toward patients? It’s essential to consider the ethical implications of creating a system where individuals are not only treated with compassion and understanding but also actively involved in decisions about their care.

Looking at these complex questions, it’s vital to remember that this isn’t just about my own experiences, but about the countless others who have faced and continue to face similar challenges within the mental health care system. It’s about creating a system that upholds the dignity and well-being of every individual, no matter their mental health condition.