8 April 2011
The British Lung Foundation (BLF) along with the country’s leading clinicians and experts in respiratory healthcare are warning that patients needing home ventilation are at put risk at the hands of poorly trained carers and inadequate and potentially dangerous equipment, arguing a lack of specialist commissioning and has led to inequality of access to best care.
The BLF along with 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.
Over 3,000 people in the UK receive home ventilation either through a tracheostomy, when ventilator dependent, or more commonly non-invasively by mask and ventilator overnight. Such care is needed for patients with severe lung conditions such as chronic obstructive pulmonary disease (COPD), muscular dystrophy and motor neurone disease.
Dame Helena Shovelton, Chief Executive of the British Lung Foundation,
said: “It is important that mechanical ventilation is commissioned at a national level to ensure the over 3,000 patients needing oxygen are not left at risk. The Government needs to step in to ensure the level of care people receive is not dependent on where they live.”
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.
Nic Bungay, Director of Care, Support and Campaigns at the charity,
said: "It is a matter of grave concern that the NHS is leaving people in hospital for months at a time when they could be recovering at home with their family supported by an expert nurse.
"Not only is this a waste of money but is an unacceptable waste of lives that are often too short as it is.
"The Muscular Dystrophy Campaign is calling for these services to become nationally commissioned to ensure a good standard of care across the UK and to end the potentially life-threatening postcode lottery."
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