Some people who receive 24-hour nursing at home are not always in the care of competent people while others are kept in hospital for far too long due to fragmented home services.
The warning comes after the case last year of tetraplegic Jamie Merrett, whose life support machine was switched off by mistake by an agency nurse.
Mr Merrett had a bedside camera set up at his home in Wiltshire after becoming concerned about the care he was receiving.
The nurse involved is due to appear before a hearing of the Nursing and Midwifery Council.
Experts writing in the British Medical Journal (BMJ) said patients needing home ventilation often need an “extensive care” package that provides long-term medical, nursing and physiotherapy support.
Special units would be best placed to co-ordinate this care but very few exist in the UK.
“Individual hospitals may have to arrange home care without adequate support for patients or appropriate assessment of the competency of carers,” they said.
“This places patients at risk.
“The complexity of care needed often results in delayed discharge, and this has an impact on limited critical care resources if such patients remain within the intensive care unit.”
Figures suggest more than 3,000 people in the UK receive home ventilation either through a tracheostomy tube or more commonly by mask and ventilator overnight.
Patients with muscular dystrophy, a muscle-wasting disease that eventually affects the heart and breathing muscles, can need ventilation, as well as those with motor neurone disease and conditions that affect the lungs or chest wall.
Dr Craig Davidson, from Guys and St Thomas’ Hospital and one of the authors of the editorial, said the problem was recognised nationally in 2002 but nothing has been done.
The limited number of units around the UK “have been developed by medical pioneers and enthusiasts”, he said. “This means inequality of access to best care.”