L’Arche: Failures are ‘systemic’ in NHS treatment of the disabled

Manchester, England, Apr 5, 2019 / 11:55 am (CNA).- The international federation L’Arche says that a British hospital’s mistreatment of a man with Down syndrome in the weeks leading up to his death point to systemic faults in the medical care of the disabled, especially within the UK’s National Health Service.

Giuseppi Ulleri, 61, died in 2016 from pneumonia, after being hospitalized at the Manchester Royal Institute following a fall. Ulleri, known as Joe, was a member of L’Arche Manchester. He died several days after L’Arche members and Ulleri’s family members warned hospital officials that the man’s health condition was deteriorating rapidly.

Last month, after a two-year inquest, a jury British concluded that Ulleri’s death was partially caused by hospital failures.

“Joe was a joy to have in our lives. He loved life, loved music, loved parties, loved hats, loved his family and loved his friends. He didn’t deserve to die without adequate care, without adequate food, and without adequate pain relief,” L’Arche members said in a March 29 statement.

“The system itself let Joe down,” L’Arche said.

“There are systemic faults in the healthcare system when it comes to treating, and respecting, people with learning disabilities.”

“Joe did not get the care he deserved. He was given paracetamol for a broken pelvis, wrist and neck. His feeding needs were complicated, but despite all the doctors and nurses who saw him, no decision ensured he received food. There were delays at every stage of his treatment and poor communication between health professionals and with us. Joe died of pneumonia, made worse by being kept flat in his bed and by a lack of food. He lost a fifth of his body weight during his three-week stay in hospital,” the statement said.  

L’Arche is an international federation of communities comprised of persons with and without intellectual disabilties.

Founded in 1964, L’Arch aims to form communities in which disabled persons find a place in society, and a community committed to knowing them as individuals. The communities are rooted in expressions of faith and friendship, and were founded by Jean Vanier, a Catholic philosopher who was honored in 1997 by Pope St. John Paul II for his work.

Ulleri was a member of the L’Arche Manchester community and an active parishioner at his parish.

“Joe was a much-loved son, brother and friend of many people….He was kind, funny, mischievous, joyful and loving. His death came as a terrible shock and we are so very sad to have lost him.  We miss him.”

“Too many people with learning disabilities are dying too soon in hospitals. Many reports have been written and many deaths have been documented in great detail. The Government set up an inquiry into premature deaths of people with learning disabilities and accepted its conclusions. Yet it is still happening,” L’Arche said.

“Hospital staff need to provide better care to people with learning disabilities. They need to take time to understand their needs, and listen to them and their families and carers. They need to be prepared to learn and adapt their procedures to suit people’s needs.”