Breathlessness is invisible in clinical consultations.
Clinicians (e.g. doctors, nurses, physiotherapists) do not routinely talk about breathlessness with patients and, if they do, they find it hard to explain clearly. In long-term conditions, patients may assume breathlessness is something to be ‘put up with’ and stop telling their clinicians about it.
If nothing is said, or advice is misunderstood, then people with breathlessness will not know there are proven ways to help relieve the symptom. Many people living with breathlessness also fear that breathlessness is harmful.
Without clear communication, they may avoid activities that cause breathlessness, which results in physical deconditioning and makes their breathlessness worse.
We do not know the best way for clinicians to explain what chronic, or long-term, breathlessness is, or which words and phrases are most helpful, easy to understand and which support self-management.
We will develop a communication pack with plain English breathlessness explanations and supporting materials to help clinicians talk with patients and family supporters about breathlessness routinely in a way that helps them understand what it is and encourages them to use daily self-help techniques.
We will hold three workshops with patients, supporters and clinicians to co-design the communication pack. We will then work with clinicians willing to test the pack with patients and supporters and use this information to refine the pack.
We will ask clinicians, patients and supporters for their views after patient consultation with or without the pack, and we will use the feedback to revise the materials.