L’Arche member death shows ‘systemic’ faults in NHS

05 April 2019

People who have learning disabilities are being failed, says community

L'ARCHE MANCHESTER

“Popular parishioner” Joe Ulleri

“Popular parishioner” Joe Ulleri

THE death of a 61-year-old man with Down’s syndrome, who died in hospital after staff failed to feed him properly for 19 days, is evidence of “systemic faults” in the health-care system with regard to people with learning disabilities.

This was the warning issued by L’Arche, in response to the death of Giuseppe “Joe” Ulleri, which came before the Manchester Coroner’s Court last week.

Mr Ulleri, from Withington, died from pneumonia in 2016, after struggling to ingest food given through a tube at Manchester Royal Infirmary, the inquest heard. The coroner, Angharad Davies, said that he had spent “long periods” with “no nutritional support”. His weight had fallen from 8 stone 11 lbs to 6 stone 13 lbs.

The jury concluded that “failures in overall care”, consisting of “failure to provide nutrition” and nursing him “in a supine position” contributed to a fatal lung infection.

Manchester University NHS Foundation Trust apologised and said that it had taken “measures to ensure that this does not happen again”, including “extensive work on nutrition and hydration”.

Mr Ulleri was a member of the L’Arche Manchester community, and a “popular parishioner” of St Cuthbert’s, Withington, the community leader of L’Arche Manchester, Kevin Coogan, said after the hearing.

Reading out a statement outside the court, he described how members of L’Arche had accompanied Mr Ulleri to hospital after a fall at home. “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.

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“There were delays at every stage of his treatment, and poor communication between health professionals and with us. . .

“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 health-care system when it comes to treating and respecting people with learning disabilities. . .

“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.”

Last year, the NHS Learning Disabilities Mortality Review looked at 103 deaths in 2016-17 (out of a total of 1311), and found that, in 13 cases, the person’s health had been adversely affected by delays in care or treatment, gaps in service provision, organisational dysfunction, or neglect or abuse.

Patients, carers, and clinicians have argued that a National Mortality Review Board is needed, to ensure the ongoing systematic investigation of all learning-disability deaths. The number of learning-disability nurses has fallen by one third since 2010.

Last year, Mencap launched the campaign “Treat me Well”, which called for better training for NHS staff. It is estimated that people with a learning disability die, on average, 16 years younger than the general population, and that 1200 people with a learning disability die avoidably every year.

A government consultation on mandatory training for NHS staff ends on 12 April. For more information, visit www.mencap.org.uk.

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