Imagine how terrifying it would be to spend every day fighting for breath, to be constantly in and out of A&E because you’ve had a life-threatening asthma attack. Imagine how frustrating it would be to find your medication wasn’t working or left you with debilitating side-effects like diabetes or osteoporosis. That’s the reality for an estimated 200,000 people in the UK who have severe asthma and may not even know it, according to Slipping through the net: The reality facing patients with difficult and severe asthma, a new report by Asthma UK.

 

Brand new asthma drugs have less side effects

 

People with severe asthma can wait years to get a diagnosis, meaning they waste years on ineffective treatments.
 

The term ‘severe asthma’ refers to a specific type of asthma that is uncontrolled and doesn’t respond to usual medicines. People living with severe asthma often take numerous courses of oral steroids that, when used in the long-term, can leave them with toxic side-effects. They can also struggle with life-threatening asthma attacks and be in and out of hospital.

The lack of understanding about severe asthma by patients and healthcare professionals means the condition is not being effectively diagnosed. There are just 894 people registered as having severe asthma, but Asthma UK estimates 200,000[1] people in the UK have the condition. Without an accurate picture of how many people need support and treatment, it’s impossible for the NHS to provide enough services for care.

 

Getting breathless changing bed sheets

 

We know of one woman who is just 29 and has severe asthma that has prevented her from working for three years and left her confined to her house. She can’t walk to the end of her road, gets breathless just changing her bed sheets and has daily asthma attacks. At times she’s had an ambulance called to her home three times a day.

 

Waiting as long as 20 years for diagnosis

 

Vickie isn’t alone. We often speak to people with asthma who are shunted from one course of medication to another and bounced between GP, hospital and back again. Their condition might be so severe and disruptive it has cost them jobs, relationships and their social life. People with severe asthma can wait years to get a diagnosis, meaning they waste years on ineffective treatments. We know of one patient who waited 20 years for a diagnosis!

The delay in being diagnosed is deeply distressing for patients and costly to the NHS. People with uncontrolled severe asthma cost the NHS four times more to treat than the average patient. The cost can be pushed upwards by the combination of delayed referral, treating side-effects of oral steroids and the increased need for patients to use GP surgeries, hospitals and A&E.

 

Asthma drugs with fewer side-effects giving patients hope

 

Thanks to ground-breaking research, diagnostic tests are being improved and new biologic drugs called monoclonal antibodies (mAbs) have been developed. They have lesser side-effects than long-term oral steroids and are giving severe asthma patients hope. But people living with severe asthma need to be identified, referred and treated quickly. There need to be clear guidelines on when patients should be referred to specialist clinics, and healthcare professionals need to follow them. Patient care records should be shared among care settings so clinicians can properly assess a patient’s health. We want to support health bodies to make these changes that could transform the lives of people with severe asthma. To find out more visit asthma.org.uk

 

[1] Slipping through the net: The reality facing patients with difficult and severe asthma, Asthma UK, 2017. https://www.asthma.org.uk/globalassets/get-involved/external-affairs-campaigns/publications/severe-asthma-report/auk-severe-asthma-gh-final.pdf