Fourteen people with a learning disability and/or autism have died in mental health facilities in Scotland in the space of just six years, new figures reveal.

Public Health Scotland (PHS) published the data taken from Scottish inpatient facilities between April 2015 and December 2021 following a parliamentary question by Alexander Burnett, the Conservative MSP for Aberdeenshire West.

Mr Burnett obtained the figures as part of his campaign to end the “national scandal” of keeping people with learning disabilities and autism in long-term, secure facilities.

Cause of death is not detailed in the report

The data revealed that six of the patients who died were aged 65 or older, three were aged 55-64, four were aged 45-54, and one was under 45.

The majority (64%) of the patients were male and all but one had a continuous inpatient stay of over three months, with six of these patients (43%) having a stay of over one year.

The paper does not detail the cause of death and states that the “patient's diagnosis of or treatment for learning disabilities or autism may have no bearing on the patient's cause of death.”

A Scottish Government spokesman said that patient safety “remains a priority” and the “Scottish Patient Safety Programme continues to be implemented in all NHS boards to improve the safety of care and ensure better outcomes for some of our most vulnerable people.”

The actual number of deaths may be higher than the report suggests

Worryingly, the actual number of deaths may be higher, as for the patient to be included in the analysis, they must have been admitted within the learning disability speciality or have a learning disability or autism ‘ICD-10’ code in their record.

For patients with multiple other conditions, their learning disability or autism may not have been recorded, as another condition may have taken clinical priority.

For example, if Down’s syndrome is the only condition noted in the clinical discharge summary, with no reference to learning disability, the person’s data will not have been recorded in this report.

The data is also limited to inpatient care in mental health facilities, and patients in other inpatient settings have not been included in this report.

“Hospitals are not homes”

Rob Holland, acting director of the National Autistic Society Scotland, told The Herald that the data was a “step forward in understanding the experience of autistic people and people with a learning disability within inpatient psychiatric facilities”.

He added: “While it does not shine a light on the reasons for the deaths it does highlight how almost all of those that died had been within institutional care for more than 30 days with six people having been there for more than a year.

“Hospitals are not homes and it adds further impetus to the Scottish Government’s ‘Coming Home’ strategy to reduce delayed discharge and support people to live in homes of their own choosing.”