An estimated 200,00 people in the UK have asthma which is so severe that it does not respond to usual treatments putting them in a never-ending cycle of emergency trips to hospital. We wanted to gain a better understanding of how people with severe asthma live their lives and their experiences of the care they receive, so we conducted semi-structured interviews with six adults with severe asthma.
Our new report Falling into isolation: lived experience of people with severe asthma finds that living with severe asthma is so much more than asthma attacks and occasional hospital admissions. It can have devastating consequences on every aspect of people’s lives. They may feel isolated, lonely and scared, left without hope and the right support.
Download a PDF copy of Falling into isolation here.
We think it’s time that the needs of people with severe asthma are at the heart of designing specialised services, and that commissioners and local service leaders take account of what people with severe asthma really need. Services need to understand the real lived experience of people with severe asthma and provide the right support to stop them falling into isolation or living a life of fear and anxiety.
We know from our previous reports, now reinforced by the voices of people with severe asthma, that for there to be real change the following must happen:
- The development of clinical guidelines for difficult/severe asthma, including when to refer to a specialist.
- A review of capacity in secondary and tertiary care based on the unmet need highlighted in our previous Living in limbo report and the commissioning of new asthma services as required.
- Appropriate access to biologic treatment to address the huge unmet need
- Better data sharing between severe asthma centres and hospitals to ensure patients get the best level of care possible.
Our previous difficult and severe asthma reports