THE sister of a disabled Sheffield woman who died in squalor after refusing social care for more than three years has called for more research into the condition which left her wheelchair-bound for almost two decades.
Angela Wright, aged 45, was paralysed from the neck down after she was struck with neurological condition generalised dystonia.
Social carers and nurses stopped visiting the former nurse in 2005, after she turned down help following a long dispute with Sheffield Council.
Mother-of-three Angela lived in her broken wheelchair, never changed her clothes and went to the toilet where she sat.
She ordered food by operating her computer with her mouth. She eventually died at her bungalow on Totley Brook Road in 2008.
A report from the Sheffield Adult Safeguarding Partnership last month concluded Angela’s death could have been made “less harrowing” if council workers and health care staff had intervened in her final weeks.
Her 51-year-old sister Carolyn Petch told The Star Angela “didn’t understand what was actually wrong with her”.
She said: “My sister was four-and-a-half stone when she died. She just looked like a corpse – I will never, ever forget that.
“Dystonia affects entire families. They need to know how to deal with people with dystonia – they might get another person like Angela.
“I don’t think there’s enough research actually put into what causes it, or how you actually get it.”
Carolyn, who moved to Scotland in 2006 but used to live in Parson Cross, Sheffield, said her sister was bright, funny, fit and active.
The seriousness of her condition became apparent when she collapsed on manoeuvres with the Territorial Army.
“She went into a sleep-like coma for three days. She would have been around 18 to 20 at the time. Nobody could understand where it was coming from.
“It was quite weird how it happened – her body just shut down. It happened quite a few times.
“She progressed very quickly from not being able to walk to being in the wheelchair, and then all her body shutting down. The only thing she could do was turn her head. It took years to diagnose what was actually wrong with her.”
Carolyn last cared for her sister in 2005. “I couldn’t do any more. I had a job – I was coming in and running over to Angela, she was an hour away. The more I did, the less the social services did.
“Angela’s own words were ‘I’m like a baby – I only need to be fed and changed and that’s me for the rest of the day’.
“That’s all she wanted, for someone to feed her, change her and let her get on with the rest of her life. She knew the caring profession and saw the standard of care that she should be getting.”