Inquest: Letchworth patient died after hospice staff wrongly assembled her ventilator

Sarah and Emily Bushaway

Sarah and Emily Bushaway - Credit: Archant

A 21-year-old girl from Letchworth tragically died after blundering staff botched the assembly of her breathing apparatus at the hospice where she was being cared for.

Sarah and Emily Bushaway both suffered from a terminal illness called Niemann-Pick disease type C

Sarah and Emily Bushaway both suffered from a terminal illness called Niemann-Pick disease type C - Credit: Archant

An inquest into the death of Emily Bushway at Oxford Coroner’s Court today, heard she suffered respiratory distress, turned blue and died because the hospice staff assembled her ventilator wrongly.

Emily had lived with the rare genetic condition called Niemann-Pick disease type C (NPC) which left her unable to talk and needing a wheelchair to move around.

Her exhausted family had put their terminally ill daughter into respite care at Helen and Douglas House Hospice in Oxford, just to have a few day’s break.

Emily had the assistance of a ventilator to breathe after a bout of pneumonia earlier in the year.


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A valve in the ventilator had to be regularly changed and nurses showed the procedure to the respite team nurses who assured the family they could cope with the extra care.

But when Emily’s father and grandfather arrived to take her home, her lips and nails were blue and a piece of the ventilator valve was missing.

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Her father Mark also realised her oxygen levels were low and she had not been given an oxygen mask, as the family tried to get more oxygen into her body.

She was taken to hospital where she suffered a cardiac arrest and died.

Emily and her younger sister, Sarah, both suffered from the debilitating condition and were usually both cared for by their parents at home.

Oxfordshire Coroner, Darren Salter, heard how the family desperately asked nurses at the hospice where part of the ventilator valve was but were met with the remark, “what’s that?”

Mr Bushaway, of Campers Avenue in Letchworth, told the inquest about the moment he went to pick up his daughter on May 14 last year, with her grandfather Dave Bushaway.

“I could see her nails were blue, I could see her sats [oxygen saturation levels] were low,” he said.

“If she falls below 90 she’s supposed to be given oxygen. I asked why she wasn’t on oxygen and no-one answered. I connected Emily to the oxygen but the alarm was still going off on the ventilator.

“I saw half the whisper valve was missing, I asked for another whisper valve and then the nurse said ‘what’s that?’.

“I just walked in and they were standing there doing nothing. We took over really,” he told the coroner.

Margaret Molden, a specialist nurse, had also arrived at the hospice ready for Emily to be taken home and was shocked to discover the state her patient was in and found the ventilator had not been assembled correctly.

She told the inquest: “We went to Emily’s room and I had a feeling something was wrong. She was sat in a wheelchair and looked poorly, her lips and nails had a blue tinge.

“I looked at the whisper valve and saw that one piece was missing, I asked for another whisper valve but I don’t think the staff knew what I was referring to.

“In my experience you would never look after a patient with that kind of ventilator unless you were competent. You need to do checks after you connected it to see that the air is passing through.”

A post-mortem examination by pathologist Dr Alexander Kolar found that if the inquest accepted the ventilator did not function adequately and was not correctly assembled, the cause of death he would give was respiratory compromise due to ventilator function.

However, he added that if the ventilator issue was not accepted then a cause of death would be complex to ascertain.

Mr Bushaway told how Emily was diagnosed at the age of six years old with the rare genetic condition which leads to a build up of cholesterol in the brain.

He said: “Eventually she stopped walking and needed a wheelchair.

“She also stopped talking and needed full-time care. She was fed through a tube in her stomach and would have daily seizures.

“She caught pneumonia three years ago. She had to be put on critical care and ended up on a ventilator.”

On the day he left her in the care of the hospice Mr Bushaway said he was concerned the staff might not be fully prepared to care for his daughter due to the use of her ventilator.

“I called to ask if they could still care for her with the ventilator,” he said.

“They said it would be okay.”

The inquest continues.

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