CARE for people with chronic fatigue syndrome has been scrutinised after a 34-year-old committed suicide fearing she would be forced into the wrong care.
An inquest was held into the death of Emily Gregg, a former police officer in Portsmouth, who hanged herself in her garden in November, 2014.
Her father, Phil Gregg, said she was ‘a joy’ and ‘fiercely independent’ until she woke up in pain on her birthday on July 1, 2013 and could not move her legs.
Mr Gregg said her GP knew little about the syndrome so Emily paid for advice from a clinic in London then she had to move in with Mr Gregg, in Southbourne, so he could care for her.
Her condition was stable until July 13, 2014, when she woke up paralysed from the neck down and for six days, Mr Gregg cared for and washed her before he asked to be referred to a community nurse.
When Mr Gregg asked for a second nurse he was told to ask charities for funding. He wrote to MP Andrew Tyrie who wrote to Amanda Rogers, director of adult services at the county council. She then arranged for two nurses to be put in place.
By then Emily was being treated by a Southbourne GP called Pippa Lally who Emily preferred, but Emily could not sleep, was bed-bound and spent much of her time in the dark, with ear protectors on.
“Emily had this very morbid view of how her life was going to continue,” said Mr Gregg.
“There was a total lack of facilities. It seemed bizarre we had our own specialist service in Haywards Heath but because she had severe symptoms, they weren’t able to help her, which seems ludicrous.”
Dr Lally referred Emily to a special unit in London but it had a four to six-month waiting list.
Mr Gregg looked it up and read that it was a locked unit and was for people with mental health problems. He did not tell Emily but he was concerned.
On November 14, Emily texted her friend and former colleague Julie Fry, hinting she was thinking about ending her life.
Julie said: “I felt that she was concerned people were going to start questioning her mental ability. She wanted advice about what adult services could do and if they could take her away.”
But Emily was making plans for the future so Julie did not think there was serious cause for concern.
Emily’s mother Susan Gregg, was upset Emily was only ever diagnosed through method of deduction and there was no clear care pathway.
“Why do you accept someone is so ill they can’t move and not have her in hospital?” She said. “You wouldn’t have an animal kept like that. Why was that allowed to continue?”
West Sussex Coroner Penelope Schofield questioned Emily’s care team and concluded awareness and care services for chronic fatigue syndrome were insufficient.
She said: “I’m going to write to the doctor who cared for Emily at the Portsmouth surgery about my concern nothing more was done to diagnose her illness.
“I hope other families like yourself are not faced with having to drive a loved one’s care in the way that you did.”
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