Better care for all: using oxygen effectively

Many patients with lung disease rely on oxygen from cylinders to help them breathe, which can be used at home or on the move. But like other inhaled therapies, oxygen is often prescribed incorrectly. Around 1 in 3 patients with oxygen do not benefit. We want this to be put right by ensuring that home oxygen therapy guidelines published by the British Thoracic Society are recognised and followed by health care professionals.

A personal view: getting access to oxygen

Debra Barlow contracted pneumonia at the age of 41. This caused extensive damage to her lungs, resulting in pulmonary fibrosis. After a lengthy stay in hospital, where she was ventilated and in an induced coma, she was well enough to be discharged. She spent 9 years on oxygen 24/7 until she received a double lung transplant in 2015.

Debra, who lives in Nottinghamshire, says that when she was on oxygen she fought a constant battle to obtain optimal equipment and supplies. “Suppliers seemed to have the view that ‘we’ve given you oxygen so what more do you want?’ It always was up to me to know about the latest equipment and to ask them for equipment I was entitled to.”

“Having a lung disease is extremely tiring and finding the energy to chase up or argue with an oxygen supplier is a challenge.” Debra, now 53, says her experience in nursing and social work was a real asset, but she understands why other patients without her knowledge would find it extremely difficult.

Debra says that provision for people with a lung condition is mostly designed for the elderly, excluding younger patients. “I was focusing on improvement and getting my life back, not just on fighting off infection,” she says. “Younger patients like me have different needs and expectations.”

Measures of success

All IPF specialist centres to be routinely assessing patients on presentation for long term and ambulatory oxygen therapy, as monitored by the BTS IPF Registry.

An increase in the number of people using home and ambulatory oxygen according to the British Thoracic Society home oxygen therapy guidelines, with a baseline established through the National COPD and Asthma Audit programme.

Data need: Audit of oxygen use according to prescribing guidelines to be collected through the National COPD and Asthma Audit programme, with a baseline established within one year.

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