The UK has the highest rates of asthma anywhere in the world, and although it touches the lives of almost every single person in the country, there is virtually no statutory funding for asthma research. "Policy makers often do not see asthma as a serious health issue," says Donna Covey, chief executive of Asthma UK. "The reality is that it is a killer."
This year, World Asthma Day (4 May) emphasised the life-threatening nature of the condition and the damaging effect it has on a sufferer's social, mental and economic wellbeing. "We've shied away from that message in the past because we've always encouraged people to be optimistic and feel that they can control their condition," says Covey.
While conveying the seriousness of the condition if not managed properly, Asthma UK also aims to remove some of the stigma of asthma.
The charity came into existence 12 years ago when several existing charities were merged to form the National Asthma Campaign. The charity is a policy organisation, but also runs an advice line and raises funds for medical research. "People weren't accessing our services because the name did not convey that side of our work," says Covey. So on the day that it launched its biggest public awareness campaign, the charity changed its name to Asthma UK.
The awareness campaign received extensive coverage in The Sun, on GMTV and Radio 4's Today programme. When staff arrived for work at the charity's north London offices, there were more than 500 email enquiries waiting to be dealt with, and the helpline took thousands of calls on the first day.
For the first time, the charity focused on the life-threatening nature of the condition. Asthma kills three people every day in the UK, with the real tragedy being that these deaths are almost always preventable.
There are 5.1 million people with asthma in the country, with symptoms ranging from breathlessness to debilitating attacks.
Although asthma is widespread, many sufferers are given little explanation of the condition and how to control it. "Out of the blue, you are told that you have a condition that will affect you for the rest of your life, yet many people are not given an explanation of what the diagnosis means," says Covey. The average GP appointment lasts seven minutes, and there is simply no time to give the patient all the information.
"People don't know what the triggers are or how to recognise when an attack is imminent. Sometimes they're not given a demonstration of how to use their inhalers, so they may not even receive the medication they've been prescribed. There is anxiety about asthma medication, because it can contain steroids, so people worry whether it's safe. From the calls we receive it's clear that people with asthma are not getting the care they need from health services."
Covey's career began in the trade union movement, and her interest in health policy grew as the movement towards patient-centred services gained momentum. "My background is in advocacy and empowerment, so I'm interested in how you change people's experience of health services," says Covey.
Starting out as a volunteer on her local community health council, Covey was director of the Association for Community Health Councils for England and Wales for three years before taking up the post at Asthma UK.
"The health service is staffed by dedicated professionals who are let down by systems that are not concerned with what people's lives are like.
It's the when, where and how you provide services that matters."
In the absence of good advice, people are left to manage the condition on their own, with often disastrous results. The charity is dedicated to providing support and advice for sufferers, but also campaigns for policy change. Two years ago, the charity set up the National Asthma Panel, a demographically balanced polling organisation, which ensures that the charity's policy aims are grounded in the experience of the condition and will have public backing. Asthma UK is campaigning on three policy issues: a ban on smoking in all public places, free prescriptions for people with asthma, and more research into the causes of the condition.
"Second-hand smoke was identified as a massive trigger, and the policy climate on smoking is very favourable just now," says Covey.
According to Asthma UK, someone with severe asthma could be paying as much as £1,500 a year in prescription charges, but people with less severe symptoms will only buy the emergency inhaler. "Many are playing Russian roulette by skimping on the day-to-day medication that will improve their long-term health."
Covey points out that asthma is not just a medical condition, but a social one. "Many people are unable to work or are severely limited in the work that they can do. It's a major illness, and one diagnosis can affect a whole family." Because of the lack of research, the causes of asthma are not known, but there are clear correlations with poverty. Poor housing, smoking and the fact that children of smokers are more likely to develop asthma than the children of non-smokers mean that asthma is a social issue as much as a medical condition.
"Asthma as a condition doesn't discriminate, but there is evidence that people in lower socio-economic groups are not getting the same care," says Covey. "That's why it was so powerful to get the story in The Sun, because that's exactly the audience that will ignore a health warning from the Chief Medical Officer. I would say that the Government is not doing enough at the moment, but we are providing them with solutions."