Leslie's Story

*The above photograph is used for illustrative purposes and does not represent the person quoted. Names have been changed for privacy.

For our Better Care = Safer Care campaign, Leslie shares her experiences of fighting to keep her son William safe in hospital.

Trigger and content warning: self-harm and use of pepper spray.

When my son became paranoid after smoking cannabis at 19, I never imagined the decades long battle that lay ahead. Through repeated hospital admissions, changing diagnoses and inadequate support, I fought to keep him safe. The experience has shaped every aspect of my life and shown me how much families carry.

Initially, when I was worried about his symptoms, I asked his GP to refer him to a recommended Psychiatrist who specialised in dual diagnosis.  Instead, he prescribed medication without what I felt was a proper assessment. Rather than improving, he deteriorated. The side effects were severe, and  his condition worsened, which is when our lives began to unravel. That was 27 years ago.

Since then, I have lost count of how many times William has been sectioned and admitted to hospital. His first admission was to a hospital outside our local area, and although it was incredibly difficult, the care there was relatively good. But when he was transferred back to a local hospital, everything changed. Many of the admissions that followed were deeply distressing. Time and time again, I watched my son leave  hospital in an even worse condition than on admission.

One of the hardest things has been the feeling that nobody ever truly understood William’s condition. Over the years, he has received numerous diagnoses, including paranoid schizophrenia, catatonic schizophrenia, temporal lobe epilepsy, schizoaffective disorder, and autism. Yet I never felt confident that professionals had got to the root of the problem. Instead, medication became the default response.

I watched as powerful medication changed him. Sometimes he seemed heavily sedated, disconnected from the world around him. At other times, the medication appeared to make his symptoms worse. As a mother, it was heartbreaking to see the person you love disappear in front of your eyes while feeling powerless to stop it.

Some experiences still haunt me. On one occasion, William had finally been offered a medication-free assessment. I hoped it would lead to a better understanding of his needs. Instead, when he avoided a mental health assessment, he was arrested and pepper-sprayed. When I visited him the next day in hospital, he was heavily medicated and banging his head against the wall. The day before, he had been gardening. Seeing him in that state was devastating.

Throughout the years, I have been the person coordinating his care. I managed care plans, chased professionals, challenged decisions and fought for support. Too often, information was withheld behind claims of confidentiality. As a carer, I was expected to pick up the pieces while being excluded from decisions that directly affected William's life.

The impact on me has been immense. There were times when I felt completely overwhelmed and struggled to see a way forward. Living through repeated crises, caused by support being withdrawn, admissions and setbacks took a huge toll on my mental health. There were moments when I felt I couldn't cope any longer. 

What kept me going was William and the people I care about.

In recent years, things have improved but William is still traumatised and disabled by his experiences. For the last seven years, he has lived in supported accommodation with 24-hour support. It isn't perfect, but having consistent care around him has made an enormous difference.

My experience has shown me how much families carry when mental health services fall short. For decades, I have fought for my son to receive the understanding, dignity and support he deserves. No family should have to fight that hard simply to get the right care.

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Add your name to support safer mental health care. This year, we'll be pushing for improvements to inpatient mental health care and updating you on ways to get involved.