Many people with lung diseases believe there are not enough NHS lung specialists to help them cope with their condition, a survey suggests.
The British Lung Foundation questioned 3,200 patients and found many are disillusioned with what they see as the low priority given to their care.
Death rates from respiratory illness in the UK are almost double the European average, says the charity.
Ministers have promised new guidance to tackle serious lung illness.
The lung foundation (BLF) has launched "Breathe Easy Week" to highlight the problems faced by people with lung conditions such as lung cancer, chronic obstructive pulmonary disease (COPD), cystic fibrosis and asthma.
It says the UK has one of the worst records on respiratory disease in Europe, with a "postcode lottery" for care and a shortage of specialist lung doctors in some areas.
It is calling for more research into lung disease, alongside with new national standards for COPD, asthma and sleep apnoea care and treatment.
Dame Helena Shovelton, the BLF's chief executive, welcomed Britain's ban on smoking, but said other important areas needed to be improved.
Fear of breathlessness
"Lung disease brings untold suffering to millions of children and adults in the UK," she said.
"Yet it is the poor relation when it comes to medical research and death rates have seen little improvement over the past 20 years."
More than half of those who answered the survey said that they lived in fear of an attack of breathlessness, while a third said that they could not play with their children or grandchildren because of the effects of their illness.
Some said they could not run, dance or even take holidays, while 16% said that their breathlessness stopped them having sex with their partners.
However, 43% of those who responded said there was a postcode lottery of treatment, and wanted it ended, and 35% suggested that a shortfall of specialist respiratory radiologists, nurses and physiotherapists needed to be addressed.
The survey also revealed problems accessing community respiratory services, and pulmonary rehabilitation.
The chairman of the British Thoracic Society Professor John Macfarlane said: "Many PCTs and hospital trusts simply need to give greater priority to tackling lung diseases.
"Too often respiratory services are ending up at the bottom of the pile in relation to other health areas."
A spokesman for the Department of Health said GPs were already given incentives to encourage them to spot and treat people with COPD, and national guidelines were being drawn up.
"We are committed to tackling lung disease and supporting those who suffer from it.
"Some people who suffer from lung disease are smokers. Our stop-smoking services have helped record numbers of people to kick the habit."