Slipping through the net: why patients with difficult/severe asthma aren’t getting the care they deserve

Olivia Allen, author of our new report, outlines why we’re making a case for change

Asthma UK’s new report Slipping through the net: the reality facing patients with difficult and severe asthma highlights our concerns about the current state of difficult/severe asthma care in the UK. We’ve recommended some key actions which could be transformational for patients with these devastating conditions.

What are ‘difficult’ and ‘severe’ asthma?

‘Severe’ asthma is a particular type of asthma which is uncontrolled and doesn’t respond to normal treatments of preventer and reliever inhalers. It can be difficult to differentiate from ‘difficult’ asthma,which is often the result of not taking medicines correctly, other conditions, and even a wrong diagnosis (for example, not having asthma at all). Both types are characterised by uncontrolled symptoms of wheezing, shortness of breath, and cough – often resulting in admission to hospital, and sometimes even death. Often the only treatment is taking long-term oral steroids which have damaging side effects over time.

What’s our report aiming to achieve?

This is a case for change – by highlighting the problems of difficult and severe asthma care, we’re working towards ensuring that those people receive the right care and treatment at the right time.

We interviewed 17 severe asthma clinicians and nurses from across the UK to understand their experiences, as well as surveying 72 primary and secondary healthcare professionals to further understand how difficult/severe asthma care is delivered.

What did we find and what does it mean for people with difficult/severe asthma?

  • There’s currently no agreement on the number of people with difficult/severe asthma. For instance, while just 894 people are officially registered as having severe asthma, we think this is just the tip of the iceberg – in reality, the figure could be as high as 200,000.
  • Not only is this life-threatening and deeply distressing for people with difficult/severe asthma, but it’s costly for the NHS. Patients with severe uncontrolled asthma cost the NHS four times more to treat than someone with normal asthma, due to the cost of treating the side effects from oral steroids, A&E treatment, hospital admissions and GP times.
  • There are currently no universal and consistently-followed clinical guidelines for referring and treating people with severe asthma, leading to a significant variation in the delivery of severe asthma care across the country.
  • Disjointed patient care records make it very difficult to provide consistent care to people with difficult/severe asthma.

How do we improve things?

Our report makes eight recommendations for improving the state of care for people with difficult/severe asthma. These range from accurately defining these conditions and measuring the number of people living with them, to developing unambiguous referral criteria to ensure patients are referred to specialists when they need to be.

The development of new biologic drugs has improved the outlook for people living with severe asthma, but the key is to make sure the people who need them are identified, referred quickly and treated effectively. If we get that right, the difference to quality of life could be transformational.

How can you get involved?

If you have severe asthma, we’d like to hear from you. Have you been able to access specialised services? What has your experience been like? Share your story by emailing tellus@asthma.org.uk.

Find out more about difficult/severe asthma and read our new report here.