Published by UnHerd (18th June, 2019)
We should welcome the fact that the issue of inequality has surged up the political agenda, given the lingering injustices around class, colour or gender that confront many people in our society. Yet the most powerless minority, a group offered the fewest opportunities and subjected to the worst abuses, remains excluded even in the debate on diversity and inequality.
People with learning disabilities lose out from birth and are largely shunned by wider society. All too often these citizens struggle to access basic services, are excluded from schools, placed in poor housing, suffer routine abuse in the streets, and rarely get decent jobs. It is permissible for comedians to mock them and still be given plum BBC shows, while scientists are rushing into a new age of eugenics based on scans and tests to eliminate conditions such as Down’s Syndrome with scarcely a murmur about ethics.
As the father of a daughter with profound learning disabilities, I find this highly depressing. It has inspired my campaign to highlight the scandal that people with autism and learning disabilities are being incarcerated in secure hospital units for years on end by the state, often in hideous conditions behind locked doors, in solitary confinement and sometimes even with families silenced with gagging orders or through intimidation. Incredibly, the inequality inflicted on this exiled minority even includes death.
It is estimated that 1,200 people with learning disabilities die avoidable deaths in the national health service each year. That is 100 needless deaths of people like my daughter each month – or more than three every day. Little wonder that women with learning disabilities die 27 years earlier than other British females and men 23 years earlier than the rest of the population. Sometimes this is due to dysfunctional services or unintentional lack of understanding, which is bad enough. But there are also cases of prejudiced professionals participating in a slaughter of innocents.
This shameful situation was confirmed by the Learning Disabilities Mortality Review (LeDeR) after Sara Ryan, a medical researcher, spoke out following the death of her teenage son Connor Sparrowhawk due to failures by Southern Health Trust. He was left to drown in a bath after suffering an epileptic fit, despite his carers’ full knowledge of his condition. The latest LeDeR report found about one in 12 of fatalities investigated ‘received care that fell so far below expected good practice that it either significantly impacted on their well-being or directly contributed to their death’. Concerns had been raised in more than one in 10 deaths.
Pneumonia, a treatable condition, was often a cause of death. The review found bias continues even after death, with cases significantly less likely to be reported to a coroner. Down’s Syndrome is listed routinely as a reason not to resuscitate, while learning disabilities appear as ’cause of death’ on medical certificates, although it is not a disease that can kill like cancer. This highlights how even some health professionals in hospitals disregard people with learning disabilities, reflecting wider prejudices that corrode our society.
Imagine the outcry if another minority was dying due to blinkered attitudes in the sacred NHS. But for bereaved families of the disabled, their misery is compounded by a struggle to have the truth heard. Take the case of Jack Adcock, a six-year-old boy with Down’s Syndrome who died die to errors made by a registrar called Hadiza Bawa-Garba in 2011. His parents suspect special needs were a factor in the neglect leading to his death. But when the doctor was struck off, there was an outcry among fellow medics leading to a long-running, crowdfunded legal case backing her – not anger over a small boy who should still be alive.
When the first LeDeR report was released last year, the health secretary did not even bother with a statement in parliament. Then the second review was ‘buried’ in the same week as two other reports into the autism scandal before a devastating BBC Panorama expose of abuse. This reduced embarrassment for the NHS and ensured Matt Hancock could clear the decks of discomforts before the launch of his Tory leadership bid. “It is worse than doing nothing,” said Ryan. “People are dying in total breach of human rights, but these people just give a pretence of doing something.”
She is right. This work by Bristol University to review more than 4,300 deaths over the past three years should be taken out of NHS hands and placed under an independent body that will not bend easily to political winds.
It is, of course, far easier for politicians to praise the NHS or pose as its protector from foreign invasion than to fight for the rights of vulnerable people falling victim to its failures.
From Westminster to our hospitals, we see clearly the gross inequality that confronts Britain’s most excluded minority and stains our society. What other group could be confined in secure psychiatric units and forcibly drugged with fewer rights than child killers amid minimal public concern? This systemic disregard is made worse as some bear the brunt of local authority spending cuts that slash support and entrench their isolation.
Now we know that people are dying from indifference in a health system supposed to offer sanctuary. And the ultimate tragedy is how few people really seem to care.