Carol Boys, Chief Executive of the DSA said today:
‘I have been appalled and saddened by the evidence given during the course of the inquest into Joe’s death…appalled that the care that Joe received at the Manchester Royal Infirmary was so disjointed and lacked any urgency or leadership; and saddened by Joe’s suffering and that his life was shortened. It is shocking that, in the twenty first century, individuals with Down’s syndrome are being denied good quality health care. These failings represent a human rights outrage.
Our thoughts are with all Joe’s family and friends at this difficult time.’
Unfortunately, Joe’s is not the only recent case of the preventable death of someone with Down’s syndrome. We have ongoing and very serious concerns about these premature and preventable deaths.
After meeting with Joe’s family earlier this year, we asked our members about their health care experiences. The responses received highlight poor understanding about Down’s syndrome, communication, decision making and discriminatory treatment based on incorrect assumptions about the person. Family members have also reported lack of empathy and compassion for the person with Down’s syndrome.
We believe that avoidable deaths and poor health care can only be prevented through better understanding of the health needs of people with Down’s syndrome, training for health professionals / carers and support staff and we will be submitting a response to the Government’s consultation on mandatary learning disability training for health and social care professionals outlining our recommendations.
We will also continue to support families, highlight these cases and push for the best health and social care possible for all individuals with Down’s syndrome.
The inquest into Joe’s death was live-Tweeted throughout from @JoeInquest. You’ll find the Ulleri family’s statement and the full narrative conclusion here.
The Ulleri family are represented by Hodge Jones & Allen Solicitors and their press release can be found here.
The Mirror covered Joe’s story at the start of the week and you can read the piece here.