Speaking out about deaths in care
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Speaker

Janine proposing a motion condemning deaths of autistic and learning disabled people in care, at TUC Disabled Workers' Conference in May 2019.

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On 21 March this year, an inquest ruled that the death of Colette McCulloch was avoidable.

Colette was thirty-five years old when she died. She was autistic, and in a hostile society, she had become mentally unwell.

She lived in Sussex, but in our under-resourced, fragmented care system, was placed in a privately-run care facility in Bedfordshire. Requests for an assessment by an adult mental health professional were refused.

Then one day, in the middle of the night, Colette escaped from the care facility, wandered onto the A1 southbound carriageway and was struck and killed by a lorry.

There was a reason that the inquest took nearly three years to happen. The original coroner insisted on discussing only the road traffic accident, and refused to consider the background of the inadequacies in the care that Colette received. Following her parents’ persistent objections, that coroner was replaced by another one, who was prepared to consider the inadequacies in her care, and helped the inquest to reach its decision that those inadequacies contributed to her death.

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That in itself would be bad enough. But Colette is not the only autistic person to have died prematurely in similar circumstances.

Connor Sparrowhawk was an autistic teenager who was also epileptic, who when he was in a care facility was left unsupervised in the bath. He has a seizure and he drowned.

Exactly the same happened to Elrich Eiffert more recently. He was placed by the NHS in a private care facility called Loring Hall, run by a private company called Oakfields Care; with the CQC decided ‘required improvement’.

Amanda Briley died while on a waiting list for a more suitable facility than the one she was in.

Stephanie Bincliffe died after being left alone for long periods of time in a padded cell with a bed pan until she grew to more than twenty stone in weight and died from the consequences.

Oliver McGowan was a young, autistic man who, when he was receiving emergency treatment for a seizure, was given anti-psychotic medication despite the fact that he did not have a mental health condition; his parents told the NHS that he was allergic to this medication. He died as a result of an allergic reaction to it.

Michael Bennett died while in the care of a charity where he had been placed by the NHS.

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I could go on, but I’m not going to. But I am going to tell you that over a period of three years, over forty autistic or learning-disabled people died in secure hospitals, nine of them under thirty-five years old.

We have ATUs – Assessment and Treatment Units (ATUs) – places where people are supposed to stay for a maximum of eighteen months but where the average stay of the nearly two-and-a-half thousand patients in ATUs is over five-and-a-half years, with sixteen per cent of them being in the ATU there for over ten years.

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The case of Colette McCulloch, which brings us this emergency motions, and the other cases I have mentioned, and other cases that I haven’t mentioned – they are all tragic cases.

But they are not ‘tragic’ in the sense of being unavoidable or accidental.

They are entirely preventable, and the are the product of the underfunding of the care system, the involvement of private companies which will always prioritise profit, and of a system that still sees disabled people as a burden rather than as human beings with rights.

That’s why the Committee has brought this emergency motion to you today. So we can join others, support families, friends and campaigners, demand justice for those people we have lost, and demand an end to the underfunding, the privatisation and the reactionary attitudes which, left unchallenged, will cause this to happen again. Please support this motion.

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