Four in five people in England at risk of having severe asthma – the most serious and life-threatening form of the condition – are not receiving the care they need, a charity has warned.
Tens of thousands of people potentially have a type of asthma that does not respond to conventional treatments, Asthma UK said, but many are not being referred to specialists for diagnosis.
Because of this, they’re also missing out on treatments that could transform – and even save – their lives. These patients are at a higher risk of dying from an asthma attack, the charity said.
Lack of care means these patients face a ‘never-ending cycle’ where they take their medication, but still have repeated life-threatening asthma attacks and end up in and out of hospital, said Asthma UK.
Many are prescribed long-term, high-dose steroid tablets which aren’t always effective at treating severe asthma and which can cause toxic side effects including weight gain, mood changes and osteoporosis.
It took Jennifer O’Hara, 49 from Wickford, Essex, three years and repeated hospital visits before she was diagnosed with severe asthma.
“I’ve had asthma since I was a child but four years ago, the stress of my father’s illness caused a terrifying asthma attack that left me in a coma for a week,” she says.
“I recovered from the coma but my asthma had worsened. Every day I struggled to breathe. I was in and out of hospital every week and my GP gave me steroids, but they weren’t making me better.”
Although her treatment wasn’t working, she says “no one had connected the dots” to realise she had severe asthma.
“Asthma was destroying my life. Friends stopped returning my calls and I lost my job. This went on for three years and it was only after another near-fatal asthma attack that I was finally referred to a specialist,” she says.
An eventual diagnosis meant she could receive a ground-breaking new drug for her symptoms. “It has turned my life around. I can finally have a social life and plan my future,” she says. “I’m so angry it took me so long to get the help and treatment I needed. Luckily it saved me just in time – for someone else it might be too late.”
Monoclonal antibodies (mAbs) are injections that can reduce or stop the need for oral steroids and have fewer side effects. They have been shown to halve the number of asthma attacks,but they are only available for patients who have been referred to severe asthma centres.
The current guidelines from the National Institute of Clinical Excellence (NICE) are not clear about when to refer people with severe asthma, which means those most at risk are not being referred. Asthma UK is calling for NICE to develop new guidelines so healthcare professionals can confidently refer patients in need.
The charity also said the NHS must ensure there are enough services in hospital and community care, and specialised treatment services to care for patients with possible severe asthma. People with uncontrolled severe asthma cost the NHS four times more than treating the average asthma patient, it added.
Dr Samantha Walker, director of policy and research at Asthma UK said: “For the first time we have the full picture of the scale of the unmet need in severe asthma care. We want healthcare professionals to take asthma seriously and refer suspected severe asthma patients more quickly, as they are have the highest risk of dying from an asthma attack.”