Patients who rely on a ventilator to help them breathe are having their lives put at risk by poorly-trained staff, experts have warned.
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 (NMC).
Experts writing today 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. The UK lags behind other European countries where centres have been centrally commissioned and licensed.”
Evidence from the Muscular Dystrophy Campaign, which contributed to the article, reveals that poor planning from health trusts and care agencies can mean long stays in high dependency hospital wards costing more than £1,500 per day.
It says carers can be inadequately trained and there are no national guidelines or a formal accreditation for training, which puts lives at risk.
Some ventilator machines are also provided without proper alarms or back-up batteries in case of power failure.
Health minister Simon Burns said: “Under the registration framework that was introduced in April 2010 for NHS trusts, providers of regulated activities must register with the Care Quality Commission and meet a set of requirements on essential safety and quality.
“These requirements include ensuring that all staff have the qualifications, skills and experience which are necessary for the work to be performed.”
Have you signed our petition to ensure nurses have a seat on consortia boards? Follow @Aseatontheboard on twitter follow for all the latest campaign news!