DSA statement on the death of ‘Jo-Jo’ from Hackney

The Down’s Syndrome Association is horrified by the details revealed today about the death of ‘Jo-Jo’.

It is appalling to read about yet another person who had Down’s syndrome, and their family, being let down by the health and social care agencies that were supposed to be supporting them.

The Safeguarding Adults Review published in June 2019 concludes that:

“The evidence and information gathered in this review and the LeDeR process outlines the ways in which both Jo-Jo and her mother, as the main carer, were let down by a succession of gaps and omissions by health and social care agencies on many occasions. Many simple straightforward communications/basic activities were not carried out, no one sought to coordinate care, good practice was ignored, policy and current learning was ignored, and unrealistic and untested assumptions were made about Jo-Jo’s mother, who was left virtually unsupported to provide daily care for her daughter’s undiagnosed skin condition….Jo-Jo’s care was not impaired by the lack of resources, rather she (and her mother) were left isolated by poor and ineffective use of resources…It is difficult not to conclude that her learning disability played a part in these gaps and omissions.”

As we have said before, the DSA is gravely concerned that, in the twenty-first century some individuals who have Down’s syndrome are being denied good quality care. These failings represent a human rights outrage.


Health Alert! Campaign: Response to Government Consultation

LeDeR programme