Human rights in two families’ battles to expose the truth about the death of their sons

Pui-Yi Cheng writes about the human rights tragedies of two disabled young men who died in care:

Nico loved music, slapstick comedy and being at the centre of attention. He was born with cerebral palsy and later diagnosed with multiple profound learning disabilities. Nico’s parents, Rosi and Ian, wanted him to have a life filled with everything he wanted for himself. But instead he died suddenly at the age of 23, while he was in the care of a supported living home.

Connor, whose nickname was Laughing Boy, had autism and epilepsy. He lived at home with his parents but when he was 18 years old, Connor was sent for a short-term stay in a residential unit. After 107 days in care, Connor was found alone and unconscious in a bath tub – it’s believed he drowned after an epileptic seizure.

In both of these harrowing stories, investigations found that the deaths of these young men were entirely preventable. Connor’s death was officially dismissed at first as natural causes and the NHS trust in charge said the accident was unavoidable. But a report later confirmed a series of damning mistakes were made in Connor’s care and treatment. And last week a coroner ruled that Nico’s life could have been saved if his care plan had been followed correctly.

It terrifies me that in the 21st Century, in Britain, people are dying unnecessarily in places we assume would keep us safe when we need help. But I’m also moved by the courage and determination of both Nico’s and Connor’s families in their efforts to get the facts surrounding both deaths out in the open. Through the tweets and blogs of @JusticeforNico and @JusticeforLB, I’ve followed the heart-wrenching accounts of what it’s like to lose a son who is being cared for by someone else, and the battles they’ve been fighting to discover the truth about their deaths.

Their stories make me realise how important strong human rights laws are. Human rights provide the minimum standards of treatment we should expect from those with power over us. If I were to ever find myself or a loved one in a vulnerable situation due to poor health, disability, or abuse, human rights would give me a way to challenge the system if anything went wrong. For the parents of Nico and Connor, human rights have been a tool to hold to account the people who were supposed to be looking after their sons but so desperately failed them instead.

In the inquest into Nico’s death, the coroner spoke about the obligations on those caring for people with disabilities to take steps to protect the right to life of those in their care. Rosi and Ian are now hoping the coroner’s conclusion that Nico’s human rights were failed will help their campaign to get an independent review into Nico’s death.

When the coroner’s ruling came out, Rosi said:

“Nothing will bring our son back. No legal verdict will change what has happened to us or calm our grief. But it might prevent it happening again and that is why we fight on. This is not the end – it is just the end of the beginning.”

Her words point to why human rights really matter – they allow us to hold authorities to account when they let us down and they help to make sure preventable tragedies are actually prevented.

For Connor’s family, their struggle for justice continues as they wait for a pending inquest and continue to call for an independent expert review.

As Connor’s mother Sara says:

“No one has ever thought of Connor being human, let alone having his rights abused.”

 

Posted 17 December 2014