Life appears to be cheap if you have learning disabilities

Published by The Times (26th December, 2018)

It is hard to imagine someone dying from gangrene in London, their flat stinking from rotting flesh. Yet this is precisely what happened to Paul, a 56-year-old man in Newham. Small blisters were found on his body and six painful months later he was dead.

Paul had Down’s syndrome and, like about 1,200 people with learning disabilities who die each year, his death was avoidable. Sadly, his fate reflects the attitudes of a society that seems oblivious to the suffering of its most disempowered citizens.

This man lived in 24-hour supposed care. Yet when he became bedridden and an ambulance was called, paramedics instantly noticed the stench of decaying body tissue. A safeguarding review found that an astonishing 27 health professionals knew of his infection but failed to act appropriately to save his life.

The terrible death of another person with learning disabilities emerged on the same day as Paul’s story. Rachel Johnston, who had brain damage from meningitis as a child, died after going for dental treatment and having all her teeth pulled out. The BBC reported two other families saying their sons had similar “full dental clearance” by the same health trust when expecting less drastic treatment. “We were very shocked,” said one man’s father. “He was very distressed. He was looking at us, like, ‘what have they done?’”

Two stories on one day offering a snapshot of life, and death, for people with learning disabilities and their families in a supposedly civilised nation. People like my own daughter. People like Harvey Price, mocked by a leading comedian and now on clothing sold online simply owing to the fame of his mother, Katie. And people like Connor Sparrowhawk, a teenager left to drown in a bath in a care unit because of NHS failures. His mother’s brave campaign to spare others such misery prompted a review that found poor care contributing to early deaths. We now know people with learning disabilities die at least two decades earlier than other citizens.

The health secretary did not even bother responding properly in parliament to this review. Meanwhile vast sums are blown locking up hundreds of people with autism and learning disabilities in secure psychiatric units that make their conditions worse, despite it being cheaper and far more effective to care for them in the community.

These are people who are shunted to the fringe of society, abused on the streets, ignored in discussions on diversity, swept aside in the social care debate, the butt of crass jokes, stripped of basic rights, dying from indifference and dehumanised. Yet no one seems to really care apart from their desperate families.

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