NIHR ARC South London researchers based at the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation at King’s College London have a longstanding programme of research that tackles breathlessness across advanced respiratory disease, cancer and other serious conditions. This work has transformed how breathlessness is recognised and managed in the UK and around the world. It has:
Equipped professionals to better recognise, assess and manage breathlessness
Helped patients manage their breathlessness, improving their quality of life
Helped policymakers and commissioners improve the quality of services
Widened access to helpful non-drug therapies
Benefited hospices and palliative care services
Provided a rapid response during the Covid-19 pandemic
Researchers from ARC South London gathered evidence on effective treatments for breathlessness, including non-drug interventions like hand-held fans and walking aids. They discovered that non-drug interventions could be effective in improving mobility, self-care and reducing the burden of breathlessness on people with advanced diseases.
This led to the development of the Breathlessness Support Service in London, a comprehensive programme that addresses the whole experience of breathlessness, not just its physical aspects.
The Breathlessness Support Service brings together experts in respiratory medicine, palliative care, physiotherapy, occupational therapy and social work. Patients using the service can visit a special outpatient clinic and or be assessed at their home. After this, they receive follow-up visits at home from occupational therapists and physiotherapists.
ARC researchers tested the service in a controlled trial and found that it improved the quality of life and even survival rates for people with lung diseases and cancer, without adding extra costs to the NHS. The service was also shown to reduce psychological distress and depressive symptoms for patients experiencing breathlessness.
These innovative services bridge the gap between different clinical specialties, enabling healthcare professionals, policymakers, commissioners and hospices to provide better, more coordinated care for patients experiencing breathlessness, including those affected by Covid-19.
I would get into a panic when I was breathless, but now I can sit down, use my fan, wet my face, read my laminate (breathlessness poem, part of the toolkit) and I calm down
I was in a very bad state before I came (to the service). I was thinking that I was about to be dying... but now I know…I can handle this
...that certainly helped me...you know, I can probably help him to calm down
Breathlessness is now widely recognised in multiple advanced diseases and is better detected, assessed and treated. Holistic approaches and services are now recommended in nursing, palliative care, geriatric, respiratory, primary care and physiotherapy texts and curriculum. King’s Health Partners – the Academic Health Science Centre for south London – developed a clinical e-learning programme ‘E-Breathe’, on breathlessness management with 3,000+ users globally.
The research underpinned recommendations across international, national and local guidelines and policy documents to improve equity, access, efficiency and clinical practice in breathlessness support.
Allied health professionals were integral to the service, supporting a range of non-pharmacological treatments, such as mobility aids and breathing retraining. Patients highly valued these components, especially those whose breathlessness restricted them to their home and could not reach outpatient rehabilitation services. These treatments have improved the quality of life for individuals with severe breathlessness and their families.
The research has influenced voluntary hospices and palliative care services to transition from traditional day-care models to rehabilitative approaches that focus on breathlessness self-management and physical function.
The pandemic meant people with breathlessness lost access to usual support services. ARC researchers responded rapidly by collaborating with patients, families, and clinicians to create practical home-based guidance for managing breathlessness remotely. This guidance was implemented locally and advocated nationally (eg, Hospice UK) and internationally (eg, European Lung Foundation, with over 275,000 views).
ARC South London researchers led an NIHR study synthesising the evidence from all studies of breathlessness services on their effectiveness and key service ingredients.
They created a public and patient involvement and engagement group, supported by the ARC, to inform research and spearhead local and national engagement on breathlessness. They also hosted public events – such as at King’s Science Gallery London – to highlight the problem of breathlessness.
…greatly improved the symptom, and in so doing been transformative in my life