Friday 29^th March 2019

STATEMENT FROM L’ARCHE, FOLLOWING THE VERDICT AT THE INQUEST INTO THE DEATH OF JOE ULLERI. 

Speaking outside the Coroner’s Court in Manchester, Kevin Coogan, Community Leader of L’Arche Manchester, read out the following statement on behalf of L’Arche.

“Joe was a much-loved son, brother and friend of many people. He was a member of the L’Arche Manchester community, a regular at South Manchester Catholic Fellowship and a popular parishioner of St Cuthbert’s Church, Withington. 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.

Joe had a fall at home and needed to go to hospital.  We went with him.  L’Arche assistants, volunteers and friends set up a rota and sat at his bedside 24 hours a day for the 22 days of his time in hospital. We helped him not to pull his tubes out, advocated for him and wanted to help the hospital staff understand him. If we hadn't been there the hospital would have needed to provide 24-hour attention, yet we were treated like a nuisance and we felt excluded from key decisions about Joe’s care. We were not heard and had no-one to turn to for clear answers.

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.  

No one seemed to be in charge. In fact, a senior doctor was responsible for coordinating his care, but we were not told that. When that doctor went on holiday, the doctor deputising did not even visit him. While in hospital Joe was looked after by some very kind, competent, caring hospital staff, but the system itself let Joe down. There are systemic faults in the healthcare system when it comes to treating, and respecting, people with learning disabilities.

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.

Joe deserved far more than to become another statistic in a report, or another headline in a paper for a day. We need action and change. 

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.

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.”