My brother William

This blog post, by Kate Northcott Spall, is part of the content produced for our 2024 coverage of Mental Health Awareness Week.

William was born on a hot summer’s morning in 1982. A longed-for baby brother for my sister and I, at 10 and 11 years old. We took on the role of mini mums from the moment he was born. We wanted to protect and nurture William from that first hot summer filled with walks, picnics, and excitement at our beautiful new sibling.  

William grew to be cheeky, intelligent, funny, and loving. We taught him to read before he started school and he’d draw the most incredible cartoons. A true talent, and we’d wonder what he’d do with his talent as an adult. At school he had difficulty concentrating and interacting with his school friends. Mum and Dad began suspecting Asperger’s. Many times, they’d take him to the GP and call the Education Authority for support. The support came in the form of a letter offering a diagnosis of a neurotic mother.   

William left the school system at 14 years old due to “disruptive behaviour’ and went to a centre a few hours a week for individual tuition. Despite this, he passed all his GCSEs and went on to achieve an NVQ in Business Studies. If all things were equal, he would have gone on to university like us, maybe studied art, maybe become an actor, a model, he was a 6ft 4 beauty with a booming voice and laugh.   

William had his first psychotic episode at 18. There began the painful path of mental health sections, psychiatric wards, police cells and residential care…and repeat. He would stay on this roundabout of despair for 20 years. After Mum died in 2007, he was eventually diagnosed with autism (Asperger’s - Mum was right all along), OCD and paranoid schizophrenia.   

William would never have autonomy in his life again. He would never learn to drive, have a girlfriend, have a job, have any semblance of independence. Though he still had dreams of getting married, raising children, living in his own home. 

William was a hidden treasure that never had the chance for the world to see him shine. His life was so small, so restricted, bartering with staff for a couple of hours leave. A life with so much potential unrealised.   

His treatment plan was that of an NHS plastic cup full of high dose anti psychotics, benzodiazepines, and anti-epileptics and seclusion from society. No talking therapies, attention to his wellness, little encouragement to help him join in our world.   

I believe we can do better than this. We must do better than this. We must shift the paradigm of seclusion and reactive care and instead work towards creating a purposeful and “full” life to engage, not restrict.    

William needed a life that mattered.  He had so much to offer.   

Wonderful humour, emotional intelligence, a keen mind and so kind. He has the auspicious honour of being the only family member I have never fought with. He listened, and laughed and encouraged and if I was ever angry, he’d laugh even more. A gentle, kind soul.  

William needed a treatment plan that helped him become part of the society that confused and frightened him. A fear derived from his illness and the fact that from the moment he became ill, he was ostracized from society.

William was arguably one of the most vulnerable in our society – we should judge ourselves by how we treat those who suffer such serious mental illness. We needed to allay his fears of “our world” and in turn educate those that feared his diagnosis and compounded his feelings of isolation and confusion.    

William died on a hot summer’s morning in 2021. His beautiful heart stopped. A sudden death attributed to his anti-psychotic drug clozapine. Our lives came to a standstill as we tried to reconcile the horror. The medication he had to take - would steal him from us. I wish you’d have met him, seen that smile, heard that booming laugh.  

I have spent 2 years studying his health records, clozapine monitoring and best practice for serious mental illness. I have unearthed a system that needs change. I intend to do this in William’s name. His life may have been small, but his legacy will be huge. 

My initial goal is for the MHRA to undertake a safety review of clozapine.

Thanks to successful meetings with the CEO and her team they have begun this review.

My next goal is for NHS England to endorse “The William Protocol” - a suite of measures that I’m devising with support of the Royal College of Psychiatrists. These measures will ensure far stricter monitoring of clozapine, education for clinicians, families and carers on red flag side effects, better physical care and alongside address the unfair prejudice faced by people with severe mental illness.