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Tens of thousands of people with suspected severe asthma are at constant risk of life-threatening asthma attacks because they are not getting referred for specialist treatments, a charity has warned.
Asthma UK said that four in five people in England who might be at risk of having severe asthma were stuck in “limbo” in primary care instead of being referred to specialists for diagnoses and treatments that could transform or save their lives.
In a new report, published on Wednesday, the charity warned that these people were caught in a “never-ending cycle” of going in and out of hospital with repeated life-threatening asthma attacks and forced to take treatments with “toxic” side effects.
The charity is calling for the National Institute of Clinical Excellence (Nice) to develop new guidelines so healthcare professionals can “confidently” refer patients with possible severe asthma to specialist care.
Asthma UK’s director of policy and research Dr Samantha Walker said suspected severe asthma patients had the highest risk of dying from an asthma attack.
She added: “Tens of thousands of people with suspected severe asthma are stuck in a never-ending cycle, in and out of hospital and at constant risk of a life-threatening asthma attack.
“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.
“Nice must also urgently put in place clear, simple and unambiguous guidelines so healthcare professionals can follow the protocol and more people with severe asthma can receive life-saving and life-changing treatment.”
The report, Living In limbo, the scale of unmet need in difficult and severe asthma, said many GPs were not spotting the warning signs of severe asthma including frequent severe asthma attacks.
It added that many people with difficult or severe asthma were relying on long-term, high-dose steroids which are not always effective and can cause side effects including weight gain, mood changes and osteoporosis.
Asthma UK estimates that about 127,000 people on high-dose inhaled steroids were not being referred to specialist care.
It said that new medicines were available to treat severe asthma such as monoclonal antibodies but that these injections, which can reduce or stop the need for oral steroids and have fewer side effects, are only available for patients who have been referred to severe asthma centres.
Jennifer O’Hara said she had to wait three years and go through repeated hospital visits before she was diagnosed with severe asthma and given the new drug.
The 49-year-old, from Wickford, added: “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.
“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.
“This went on for three years and it was only after another near-fatal asthma attack that I was finally referred to a specialist.
“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.”
Asthma UK’s clinical lead Dr Andy Whittamore, who is also a practising GP, said GPs were hampered by a lack of clear and effective referral guidelines from Nice for severe asthma.
He added: “Severe asthma has a colossal impact on people’s lives and can disrupt their home, work and school life.
“If someone’s symptoms cannot be controlled or they have more than two flare-ups requiring oral steroids, healthcare professionals should consider referring their patient to a specialist asthma clinic.”