Our Shared Story

Eight years ago, our family's world shifted dramatically when my brother, one of four cherished siblings, experienced a mental health crisis on a motorway in England. A kind passerby noticed him, a young HGV lorry driver, in distress, sitting in his lorry cab screaming at the top of his lungs. He was assessed by mental health services and the initial diagnosis was depression

He began to experience profound delusions, believing he was Jesus and  began behaving in a reckless manner (driving away from petrol stations without paying because he was Jesus and above the law). The definition of a delusion is “A false belief that persists despite evidence to the contrary”.

This marked the beginning of a difficult journey. As symptoms progressed, he was eventually admitted to a psychiatric inpatient unit and diagnosed as having Paranoid Schizophrenia where he was given medication to reduce the delusions. The medication worked (to an extent) and gave him the ability to question his delusions rather than believing them to be true and he returned home. The side effects of anti-psychotics can be debilitating and you have to take other medication to counter act side effects which can mimic Parkinson’s disease. For my brother – the restlessness, agitation, weight gain, feeling sluggish and slow was just not worth it (especially given how he never actually saw what the medication was doing to help) and he stopped.

We learned that relapse rates are alarmingly high when medication is discontinued, often leading to a return of severe symptoms. In “The nature of relapse in schizophrenia” an article in the BMC Psychiatry journal, studies show relapse rates close to 95% after discontinuing medication within 24 months.  Over time, my brother's delusions grew more complex, causing him to withdraw from us, his family, whom he now perceived as part of a conspiracy. He felt he couldn't trust us. He believed he was kidnapped at birth, his name was changed as was his date of birth. His delusions also involved the possibility that was actually dead or that his brain had been operated on.

Despite his complex delusions, he is considered to have the capacity to make decisions about his care. This resulted in him excluding our mother and siblings from his care process. After a prolonged hospital stay in a Northern Irish hospital, he was discharged and immediately he left the country and flew to England. He was homeless in London for three months, with us as his family desperately trying to find him. He was only found after CCTV footage showed him using a bank machine and my mother and siblings flew to London to look for him. He has since had multiple hospitalizations, spending birthdays and holidays alone.

This vibrant, loving young man, once the heart of our family, is now trapped in a cycle of isolation and distress, driven by his own tormented thoughts. Each time, the pattern repeats: worsening illness, hospitalization, treatment, discharge, and then the medication stops, and the cycle starts again.

We've come to understand that untreated psychosis can lead to a decline in function and increased resistance to treatment. We've witnessed this firsthand, grieving the loss of the brother, son, and uncle we once knew.

His most recent hospital admission only 2 weeks ago prompted me to write this petition. Despite his past history of escaping from hospital and leaving the country and despite having only been receiving treatment for 2 weeks, he was deemed well enough to have a 30 minute pass to leave the hospital. He did not return and as a family we spent a tormented evening and night contacting ferry ports, transport links and driving and walking through the streets of the City where he was last seen. We were very fortunate to locate him in a taxi depot with a substantial sum of money with his passport.

It is hard enough that he is unwell and does not wish to engage with us, but to think that he could leave the country and we would never know if he was alive or dead is unthinkable!

The Heart of the Issue

While we understand the importance of respecting individual autonomy, we must ask: how can someone making decisions based on delusions be considered to have true capacity? The current system, focused on immediate danger to self or others, often fails those suffering from severe mental illness who lack insight into their condition.

My brother, for example, lives in constant mental distress, his thoughts torturing him. He's become known in his community, his behaviour increasingly erratic and aggressive. He lacks insight, unaware of his illness.

The Mental Health Act, designed to protect individuals from unjust institutionalization, presents barriers to providing necessary care. The criteria for detention, while well-intentioned, often don't address the complex needs of those with severe mental illnesses.

Problems we have personally encountered within the guidelines

1.      My brother demonstrates a sophisticated understanding of legal rights and procedures, often using this knowledge to challenge and circumvent standard protocols. He can catch professionals off guard if they do not know the rules.

2.      He rarely meets the strict criteria for immediate danger to self or others, despite escalating aggressive behavior that poses a potential risk. Police often view him as a disruptive individual rather than a patient in acute mental distress. There is a lack of effective communication and training for police in handling mental health crises, resulting in delayed or inappropriate interventions. Mental health services and police cite restrictive criteria as barriers to timely intervention.

3.      The right to appeal detention, while essential for protecting patient rights, is exploited by those with a detailed understanding of the law and patients like my brother who are intelligent enough to understand what they need to do to get out of hospital, making it difficult for clinicians to maintain necessary long-term care.

4.      Frequent hospital admissions across multiple facilities have resulted in fragmented care, inconsistent medication trials, and a lack of continuity. Without family advocacy, he is often discharged prematurely, contributing to disease progression.

5.      Post-discharge, there is no system to enforce or encourage medication adherence, leading to frequent relapses.

 

Our Hope for Change

We believe that by working together, we can create a system that truly supports those living with severe mental illness. We propose the following reforms:

Review and reform the mental health act: expand the criteria for intervention to include individuals with significant functional impairment and suffering, even when they do not pose an immediate danger to self or others in the traditional sense

Acknowledge biological implications: Provide support for continued treatment post-discharge, recognizing the impact of untreated psychosis.

Develop and implement a system of community-based mental health services that provide proactive and ongoing support for individuals with severe mental illnesses, including those who may lack insight into their condition.

Invest in early intervention: Prevent escalation of crises and provide timely support.

Empower families and carers: Strengthen their role and provide resources and training.

Improve service integration: Create a holistic approach with housing, social care, and the justice system to provide a coordinated approach to care

Increase funding for research: Develop more effective treatments and interventions.

Create clear advocacy pathways: Enable families and carers to advocate for their loved ones.

Enhance first responder training: Equip police and others to better support those with mental illness.

We believe these reforms are essential to ensuring compassionate, effective care for individuals with severe mental illnesses, reducing the burden on families and society.

Let's join together to create a system that offers hope, healing, and a better future for those who need it most.