Why thousands of people with asthma could be missing out on life-changing treatment

Asthma UK’s recent report explores the barriers to life-changing treatment for people with uncontrolled asthma, as Joe Farrington-Douglas, Head of Policy and External Affairs at Asthma UK explains

Imagine how terrifying it would be to spend every day fighting for breath. How disruptive it would be to your life to be constantly in and out of A&E because you’ve had a life threatening asthma attack. How frustrating it would be to find your medication simply wasn’t working. Well, that’s the reality for an estimated 200,000 people with asthma who may not even know it, according to a new report by Asthma UK.

Severe asthma is a misleading term as it isn’t mild or moderate asthma which is particularly bad or severe. In fact, it’s a particular type of asthma which is uncontrolled and doesn’t respond to normal treatments of preventer and reliever inhalers. Those who are diagnosed with the condition have to take long-term oral steroids that leave them exposed to toxic side effects over time, such as osteoporosis and diabetes.

In our report Slipping Through the net: The reality facing patients with severe and difficult asthma, we have revealed that while 894 people are officially registered as having severe asthma: we think this is just the tip of the iceberg and in reality, the figure could be as high as 200,000.

This means that there could be hundreds of thousands of people with debilitating asthma whose quality of life is at rock bottom and who may be unable to work, who are following their asthma medicine routine but finding it isn’t making them any better.

Not only is this life-threatening for them and deeply distressing but it is costly for the NHS. Patients with severe uncontrolled asthma cost the NHS four times more than someone with normal asthma, due to the cost of treating the side effects from oral steroids, A&E treatment, hospital admissions and GP time. Having spoken to almost 90 clinicians in primary, secondary and tertiary care, we think there is a lack of awareness amongst patients and healthcare professionals of the symptoms of severe asthma, how to diagnose it and when people need to be referred for specialist care.

When patients have an asthma attack or a hospital admission, they may or may not be referred back to their GP. They remain in primary care and aren’t referred for the specialist treatment which would enable them to access life-saving drugs. We have heard extreme cases such as one patient who took 20 years to finally get the treatment they needed.

There are currently no universal and consistently-followed clinical guidelines for referring and treating people with severe asthma leading to a postcode lottery of care.

So, 89% of the clinicians we surveyed refer patients for a specialist opinion only if they have taken three or more courses of steroids before they are referred. This is despite the fact that recommendations from the National Review of Asthma Deaths (NRAD) say referral should be after two courses. Other clinicians are referring patients depending on whether they have had different numbers of asthma attacks or hospital admissions within a year.

Despite the advent of safe and effective drugs for severe asthma patients, many people are not getting the drugs they need or are missing out on ancillary care, such as therapies and psychological support. So, what’s the solution? The first step is for NHS England, NHS Improvement and the equivalent health bodies for the rest of the UK to work in collaboration with specialist hospitals and clinics to agree on clear definitions of what severe asthma is.

Specialist asthma centres need to ensure they are updating the Severe Asthma Registry. By getting an accurate picture of how many people with asthma are in need will enable the NHS to devise a plan to support people with severe asthma and allocate appropriate funding.

NHS service providers then need to ensure that those with the condition can access the care they need, irrespective of where they live. It needs to ensure new treatments are available and there are funds in place to support severe asthma treatment and care.
Patient care records need to be shared across care settings. This means patients are less likely to fall through the gaps between different parts of the pathway and clinicians will be able to understand their patients’ medical history.

There is also a role for digital health technologies to benefit people with severe asthma. Examples are smart inhalers – devices fitted to an inhaler which can detect how someone is using their inhaler and send the data to a smartphone or healthcare professional in real time. This could be used to detect if a person with asthma is using their inhaler too much, a sign that they may need support to better manage their asthma or may need help with their inhaler technique.

With appropriate consent, the cumulative data from new technologies could also be shared with researchers, to inform new treatments and service delivery. Used consistently across a locality, technology such as this could enable NHS trusts and commissioners to stratify risk and allocate their resources effectively.

The outlook for people living with severe asthma is becoming more hopeful, but the key is to make sure they are identified, referred quickly and then treated effectively. We want to support health bodies to make these changes that could transform the lives of people with severe asthma.

For more information about severe and difficult asthma and to read Slipping Through the net: The reality facing patients with severe and difficult asthma https://www.asthma.org.uk/severeasthmareport.

Joe Farrington-Douglas
Head of Policy and External Affairs
Asthma UK
Tel: +44 (0)300 222 5800
info@asthma.org.uk
www.asthma.org.uk
www.twitter.com/asthmauk