THE squalid death of a paralysed mum who refused social care for over three years could have been made “less harrowing” had council workers and healthcare staff intervened in her final weeks, a report has found.
Angela Wright, aged 45, used a wheelchair for nearly 20 years after she was struck with neurological disorder generalised dystonia, which left her paralysed from the neck down.
Social carers and nurses stopped visiting the Glasgow-born former nurse in 2005, after she refused help following a long dispute with Sheffield Council.
She lived in her broken wheelchair, never changed her clothes, went to the toilet where she sat and ordered food by operating her computer with her mouth, eventually dying at her bungalow on Totley Brook Road in 2008.
The report has been published by the Sheffield Adult Safeguarding Partnership following a serious case review into the death of Angela, who is referred to as Ann in the report.
The review recommends seven areas of action for the agencies who cared for the mum-of-three, including NHS Sheffield’s district nursing and community services departments and the council’s adult social care unit.
Staff could have decided it was in Angela’s best interests to intervene as her death approached, the report notes, if they had declared her incapable of making her own decisions under the Mental Capacity Act.
“It is possible that Ann lacked mental capacity in the final weeks of her life when her body weight plummeted,” it continues. “Although a service intervention during the final weeks could not have averted her death, it might have made it less harrowing.
“A best interests declaration, alongside a declaration of mental incapacity, would have made clear at a much earlier stage that professionals would not have had to engage in protracted negotiations with her.”
Before Angela refused care entirely, she agreed to be looked after by a small number of “favoured” staff, the report says, including some hospital staff who complied with her “unsafe moving and handling preferences”.
“Had the hospital staff collaborated and sustained their position that they would not comply with Ann’s preference, and shared this with community and social care staff, Ann may not have held up the practice of individual nurses who complied with her wishes as the gold standard.”
Other recommendations include assigning a senior manager to oversee decisions regarding people who refuse care, and that staff working with individuals who “challenge and create conflict” should receive more support.
The report says one worker favoured by Angela left their job, “distressed and exhausted” by caring for her. Over 900 interventions were made by different agencies after she moved to Sheffield in 2001, and Angela’s medical records filled a whole filing cabinet drawer at her local GP practice.
Angela’s son Stephen, 18 when she died, was her sole carer, having come to Sheffield while his older brother and sister Mark and Maritte stayed in Bridlington with dad Malcolm.
Angela would not let Stephen clean or provide for her health needs because Sheffield Council had taken him into care when he was 14, arguing that a young boy should not be nursing his mum.
An inquest last month found Angela died from an infection called pyelonephritis - a consequence of living with a catheter that went unchanged for a long period.
Sue Fiennes, chair of the Adult Safeguarding Partnership, said: “This is a tragic case in that someone who, through their unwillingness to be cared for, has died prematurely.
“It raises questions about an individual’s right to refuse care to their detriment when agencies believe services should be provided. We accept the recommendations in this report fully.”