21/04/2015 14:18 BST | Updated 21/06/2015 06:59 BST

I Am Tired of Reports and Recommendations - What We Need Is a Culture Change in Attitudes Towards Mental Health

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They say it takes a human story to change a human heart. When my younger brother Sean was well and alive, mental health, I am embarrassed to say, was a distant concern for me. His diagnosis with schizophrenia and subsequent death at the hands of the police however transformed my outlook on life. In my twenty years of caring for Sean, I saw him being let down by a mental health system barely fit for purpose, criminalised by the police and misunderstood by society. His story tells a tale of a struggle to survive against incredible odds.

Sean had everything to live for. He was a talented musician, a traveller and a very caring brother. In the late '80s, like many black youth grappling with social and economic pressures, Sean started to experiment with drugs and had an encounter with the police at the age of twenty. Although he never showed any previous signs of mental instability, at the police station Sean was straightjacketed, injected and later diagnosed with acute paranoid schizophrenia. From that day onwards, Sean entered a revolving door system from which he never recovered.

Sadly, like Sean, many young black men back in the '70s and '80s were arrested under the sus law (now called 'stop and search') and put into the mental health system via the police. I remember when visiting my brother in hospital, locked wards were heavily populated with zombified young black men. It was heartbreaking but little has changed since. London's mental health institutions still overwhelmingly house people of colour. I was scared for Sean and I wanted to keep close to him and his mental health care team.

But confidentiality became a tremendous hurdle, as was the lack of liaison between families and the mental health team. It is paradoxical that a mental health patient must give consent at all stages before information is shared with the family. What if the patient lacks the mental capacity to make an informed decision? I knew it was important for us to be kept in the loop for Sean's sanity as well as ours but it proved an uphill battle to circumvent a restrictive narrow approach to data protection and I did not always get my way. In fact, the week before Sean's death I had no idea that he had relapsed. Things could have been different now if we were not so excluded.

Sean would often complain about the side effects of the medication. As the drug wore off, he would experience its darker side: hallucination, depression and an inability to cope. When I speak with service users today they too are worried about the over-reliance on medication rather than alternative therapeutic options. Patients do need pills, but they also require counselling, cognitive behavioural therapy and more effective preparation for the outside world.

Sean's administration of his drugs was not properly monitored either, so there were days when he did not comply and would become psychotic and behave abnormally in the street as a consequence. The police would then arrest him and detain him in custody until he was taken back to hospital. This was a reoccurring pattern and Sean was well known to the police.

Familiarity however did not breed compassion. The cops treat the mentally ill like criminals. Even in patient wards, Tasers and prolonged prone restraint are used to subdue patients. The latter more than minimally contributed to Sean's death, the inquest jury found. As his body laid lifeless and unresponsive, the custody sergeant insisted he was "feigning unconsciousness". Sean was assumed guilty, even in his death.

A recent report by the Equality and Human Rights Commission found that hundreds of deaths in custody were preventable and caused by staff's ignorance of mental health issues. To mitigate these risks, we need better training for specialists, more mental health nurses in police stations and independent mental health advocacy available to patients. More fundamentally, we need to end the stigmatisation of the mentally ill. Our vulnerable loved ones need people who care both in the community and in state settings.

We live in times where mental health is closer to home than ever before. One in every four of us suffers from at least one form of diagnosable mental health illness in any one year. I am not the only person to lose a mentally ill relative at the hands of the state. When I speak about Sean, I think of the families of Seni Lewis, James Herbert, Thomas Orchard and the many others who lost their loved ones in similar circumstances.

I am tired of reports and recommendations. What we really need now is a culture change in our attitude towards the mentally ill and policies that reflect the magnitude of the issue. In my seven years of campaigning since Sean's death, I have asked hundreds of people at public events to put their hand up if they have a family member or friend with a mental health problem. It is always overwhelming to see an entire hall of waving hands. Consider, for a moment, if you were asked the same question, would you have put your hand up too?

Marcia Rigg is the sister of Sean Rigg who died in Brixton police station in 2008. Marcia is a mental health activist and runs the Sean Rigg Justice And Change Campaign

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