Struggling to breathe and mouthing 'help me' at a video camera in front of his bed, the deeply distressing footage of Steve Carr's agonising final moments haunt his family.
Upstairs, a nurse, who was meant to be monitoring the video feed in case his breathing tube became blocked during the night, failed to respond - even though it is understood that an emergency alarm sounded loudly for more than 40 minutes.
By the time she finally came to his aid, it was too late. Steve, 67, who had motor neurone disease (MND), had passed away in the most appalling of circumstances.
The Mail on Sunday can reveal that Steve's horrifying ordeal has been investigated by the police for more than two years but there have been no charges.
Shockingly, it is claimed the nurse is seen on the video apparently attempting to unblock his airway around 20 minutes after telling his wife that she believed he had passed away, which his family fear may have been an attempt to cover up how he died.
Now his wife Maggie, 69, and sister Tracy, 63, want to highlight what they see as a shocking failure in Steve's care and prevent such a tragedy from happening again.
'I watched my husband die in the most terrible way, distressed and alone, and this is something which will stay with me forever,' Maggie said.
'This should not have happened with everything that was put in place to keep him safe. Our experience shows the unimaginable vulnerability of people in the 'care system'.'
Steve Carr, 67, had the neurodegenerative condition motor neurone disease.
MND is a progressive neurological condition that affects the nerve cells in the brain and spinal cord.
Public awareness of the disease has increased in recent years after Scottish rugby union player Doddie Weir and rugby league legend Rob Burrow, both MND sufferers, raised millions to find a cure. Weir died in 2022, aged 52, and Burrow died last year, aged 41.
Steve, a former delivery driver from Witham, Essex, was diagnosed with MND in 2021. After seven months at Royal Papworth Hospital in Cambridge, he was discharged in March 2022 and, a popular figure on his ward, was clapped out by medical staff.
Despite his terminal condition, his family said he had a 'zest for life'. He refused to sign a Do Not Resuscitate (DNR) order because he wanted to spend as much time as possible with his grandchildren.
Steve had undergone a tracheostomy to insert a tube into his windpipe, which was then connected to a portable ventilator. An agency was commissioned to provide 24-hour care, with carers and nurses working two 12-hour shifts.
A key task for them was to keep his airway clear with a suction machine. The person working the night shift, from 8pm to 8am, was meant to stay awake in an upstairs room and monitor Steve’s condition via a camera, which Maggie had installed in his downstairs bedroom, linked to a baby monitor.
At around 3.20am on May 22, 2023, a nurse woke Maggie and told her that she believed Steve had passed away. Maggie, who was married to Steve for 18 years, was shocked as he had just enjoyed ‘a good day’ and had not appeared to be deteriorating.
She later viewed the video footage recorded by the camera and was ‘devastated’ by what she saw.
The Mail on Sunday can reveal that Steve's horrifying ordeal has been investigated by the police for more than two years but there have been no charges.
She said: 'It showed my husband in severe distress, struggling to breathe, obviously needing a suction to clear his airway and mouthing 'help me'.
The alarm carried on for more than 40 minutes and the nurse did not come to him.'
The MoS understands the nurse was employed by an agency subcontracted by the primary agency responsible for Steve's care. The woman, who this paper is not naming, also worked as an NHS midwife at a London hospital.
It is claimed the video shows how, after Steve's death, the nurse made a phone call to a colleague.
She is then allegedly seen undertaking a suction procedure, which involves inserting a tube into the patient's airway and then turning on a machine to remove mucus.
Maggie last night raised questions about why the nurse would carry out this procedure despite apparently believing Steve had died.
His sister Tracy added: 'It was strange that she did that after the phone call.' Steve's family believe the nurse failed to respond because she had fallen asleep while possibly wearing earphones.
She is understood to have denied this. This paper understands that the nurse is suspended by the Nursing and Midwifery Council, and that an allegation of neglect was upheld after a safeguarding enquiry by Essex Council in 2024.
Maggie said: 'If I hadn't had a camera in my husband's room, we would never have truly known what had happened. I would encourage people in our situation to have a camera put in place.'
The primary agency responsible for Steve's care, which subcontracted another agency to look after him on the night he died, refused to respond.