entrance to cemetery, part of now closed Leavesden Hospital

As the truth emerges about the number of deaths in care homes as a consequence of Corona Virus – up to 70% of the total in some countries, and currently estimated as more than half the total Scotland – it is time to think about remembering.

Quite rightly, we held a two minute silence for all the health and care workers who died during the Corona virus epidemic. But what about the victims.

Hidden in the ‘care home’ totals are those people with learning disabilities who never made it to hospital. No idea how many, or if anyone is counting. But I do know that Do Not Resucitate notices were banged on people’s notes without consultation, even though it went against guidelines. How many, I wonder, were thought not worth sending to hospitals. As the EXCEL Centre Nightingale ward stood empty, so, behing closed doors overworked, underpaid and unprotected staff strove to staunch the epidemic.

Some lives are worth less than others.

We must never forget. But unfortunately we do forget. In Germany there are memorials to the disabled people who died at the hands of the Nazis, but although eugenic practices have flourished here too, there are no memorials. The large mental handicap hospitals, designed to stop people ‘breeding’ have disappeared. Most have left no trace, unless listed. Those have become luxury apartments, their previous inhabitants airbrushed from the landscape.

They were places of death. Epidemics stalked the wards as the Corona epidemic stalks our care homes today. Spanish flu, Tuberculosis, measles. Overworked under appreciated care staff struggled to keep people safe in poorly heated wards. ‘Accidents’, stronger patients pushing and punching weaker ones, carelessness, brutal nurses, falling in ponds, ingesting poison, failure to treat all contributed to lives that were too often nasty brutish and short. Evidence from one enrolled nurse (equivalent to Health Care Assistant today) that she had 60 patients in her care overnight, 7 died in 2 winter months, none investigated. Cover ups, compliant police, uninquisitive coroners.

Do we remember? No.

It still happens today. Thankfully it is harder to keep things hidden. Sustained efforts led by family members mean we in the UK know a lot more about these premature – and sometimes preventable – deaths than we ever did. It is not a pretty picture.

Connor Sparrowhawk died in a bath in an NHS Unit in 2013 because his epilepsy was not taken seriously. He was 18 at the time. If Sara Ryan, his mother, had not pursued her son’s death with great energy, it would have been recorded as ‘natural causes’, not the ‘neglect’ verdict reached by the Coroner (Ryan 2019).

Oliver McGowan, like Connor aged 18, died because he was administered drugs to which he was allergic, his pleas and those of his family not to administer these drugs ignored. Stephanie Bincliffe died in 2016 after spending 7 years in a padded cell, during which she gained 10 stone in weight. She was 25 at the time. Joe Ulleri entered hospital with a broken bone, a stay that ended, 3 weeks later, with his death from pneumonia and malnutrition.

These horrendous examples gave rise to a official reports, and recommendations, including a requirement to investigate premature deaths (CQC 2016), and a national initiative to investigate premature death (LEDER 2018).

We also know, thanks to a series of Reports from England, that people with learning disabilities die on average at least 20 years earlier than the average for the population as a whole – and that, unusually – women die earlier than men.

It is not inevitable that people with learning disabilities die early. It is time to start remembering. Remembering the deaths, the foreshortened lives. If we don’t learn from the past, we will definitely repeat it.

2 thoughts on “Remembering

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