So many deaths by indifference

Published by The i paper (7th May, 2018)

On Friday morning, as the nation woke up to local election results, a report was slipped out by the National Health Service. Its results exposed devastating failure, indicating prejudice towards the single most disadvantaged section of society. Yet the findings were largely ignored amid the din of tribal politics. Unlike news of missed cancer screenings earlier in the week, the Health Secretary did not rush to make a parliamentary statement, nor fire off an impassioned tweet pledging to tackle fatal flaws. There was minimal fuss in the media.

This lack of focus on such a crucial report starkly underlined our nation’s dismissive attitude towards a powerless minority. The Learning Disability Mortality Review probed 103 deaths, which was only 8 per cent of the cases passed to it for examination, thanks to underfunding. The full 1,311 fatalities were the unexplained deaths of people with learning disabilities over one 16-month period. And in 13 of those studied cases – one in eight – the person’s health was ‘adversely affected’ by issues such as abuse, delay, neglect and incompetence.

These are frightening figures. But it gets worse. The review said nearly one in three people with learning disabilities die before they reach 50 years old, compared with one in 20 of the rest of us. It found their median life expectancy is 59 for a man and 58 for a woman – more than two decades less for than fellow citizens. This reveals systemic disregard for those with learning difficulties – as pointed out by Sara Ryan, who sparked this inquiry after her teenage son Connor Sparrowhawk died due to failures by Southern Health Trust. ‘Certain people simply don’t count,’ she said.

The review confirms something long suspected: that dozens of Britons are dying needless deaths each year. This is the silent slaughter of innocents, assisted by professionals making prejudiced judgements on need or quality of life, and aided by political indifference. Too many people in supposedly caring jobs, from doctors and nurses through to care home and council staff, see learning disability as a life-limiting sickness. Medical certificates routinely list learning disability and Down’s syndrome as causes of death, yet they are not defects that kill like cancer or heart failure.

Parents tell of being bullied into allowing ‘Do not resuscitate’ notices, as if children with learning disabilities are sick animals to be put down. People unable to talk are left without drink and food. Others get shoved to the back of queues for treatment or simply ignored. I know one person phoned to be told her daughter’s airways had collapsed, yet doctors left the child untreated until her mother arrived at the hospital. More than 2,500 people with complex needs are still stuck in unsuitable short-term assessment units, despite promises to shift them after the Winterbourne View abuse scandal seven years ago.

This is institutionalised discrimination that shames our society – yet incredibly, ministers plan to tell the rest of the world how to tackle prejudice with a Global Disability Summit later this year. There are, of course, many caring and dedicated professionals. But as the father of a young woman with learning difficulties, I live in fear she might one day be left at mercy of this system that fails too often and listens too little. My daughter also has complex epilepsy that is unpredictable; one day she is all smiles and loving life, the next crashed out after violent seizures. The condition demands constant monitoring.

Connor Sparrowhawk had epilepsy, but was left to drown in a bath. Danny Tozer also had epilepsy, along with autism. The 36-year-old died after a seizure in 2015 but his inquest was only held last month after his parents fought hard to get scrutiny, in hope of saving others. The hearing exposed repeated failures in his life and lead-up to his death. Carers at his ‘supported’ yet understaffed residence failed to stick to an agreed plan of checks every 10 minutes, leaving him alone for at least 30 minutes when he died. Parental concerns were brushed aside – they even had to pay for an outside expert to teach staff how to help their son.

Carers should not need to be taught kindness. And this home is run by Mencap, a charity that sells itself as ‘leading voice’ for those with learning disabilities and their families. But its care was inadequate and it did not bother with an internal inquiry. Then it attacked bereaved and devoted parents at the inquest. ‘Danny’s life was clearly not important enough to have the reliable support to give him chance of survival in such a situation,’ his mother Rosie told me.

Mencap’s behaviour destroys any lingering faith I had in this organisation under its current leadership. It shows what happens when a charity describes itself as a campaign group but receives most of its cash – £163m out of its £191.9m income last year – providing services. Money talks and compassion walks in a crisis, as seen in squalid aid sector scandals. Concerns are intensified by 85 unexplained deaths in its care over the past eight years.

But this also exposes – like the review and its reaction, like the tide of hate crimes, like the autistic woman abused and dragged from a cinema on her birthday last week – how little Britain values people such as my daughter. The NHS could have set up an ongoing mandatory mortality review like the ones that slashed maternal and child deaths. Or spent money emulating a successful American model that cut deaths. But people with learning disabilities are bottom of all priorities, brushed aside in social care debate and killed by indifference. Who really cares, beyond their desperate and despairing families?

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