On Wednesday 4th October 2017, 37 key stakeholders attended a collaborative consultation workshop at the Cicely Saunders Institute, King’s College London, hosted jointly by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London and Northwest London.

Together, clinicians, academics, and patient and carer representatives helped generate recommendations around the design, delivery, and evaluation of services to support people living with advanced disease and severe breathlessness.

Breathlessness affects over 2 million people in the UK every year. People with advanced stages of disease often experience breathlessness even when they are resting or performing light everyday activities around the home. This workshop aimed to generate recommendations around services that offer pharmacological and non-pharmacological treatments to manage breathlessness in an individual manner. The services can involve staff from palliative care, physiotherapy, occupational therapy, and respiratory medicine. They encourage people and their family members to self-manage by teaching them ways to cope with breathlessness, to feel less anxious and more in control.

The day began with a series of presentations from clinicians and academics working with people with breathlessness. Following an introduction by Dr Charlie Reilly (Consultant Physiotherapist, King’s College Hospital) and Ganesh Sathyamoorthy (Assistant Director, CLAHRC Northwest London), Dr Matthew Maddocks (Lecturer and Specialist Physiotherapist, King’s College London) and Lisa Brighton (Research Assistant, King’s College London) provided an overview of existing evidence regarding holistic breathlessness services. Dr William Man (Consultant chest physician, Imperial College London) followed with an overview of rehabilitation services for people who are breathless, and Trish Winn (Associate Director for Quality, London North West Healthcare NHS Trust) presented a local quality improvement project testing care bundles for this population. Dr Morag Farquhar (Senior Lecturer in Nursing Sciences, University of East Anglia) closed presenting evidence around supporting informal family carers of people who are breathless. In the afternoon attendees split into 3 different groups to attend breakout sessions to priority set with structured discussion around the following questions:

  • How do we define and deliver ‘holistic breathlessness services’?
  • How and where can holistic breathlessness services be integrated into current practice?
  • How should the success of holistic breathlessness services be measured / monitored?

The groups raised the importance of determining the best models of care for people with severe breathlessness, including upskilling existing staff and integrating any new initiatives with current best practice. Many acknowledged the need to focus on patient-led goals, and ensure informal carers are included within the unit of care.

Superb event. A great mix of speakers, and an even better second half with the opportunity to work in syndicate with a diverse group of health professionals. A thought provoking afternoon especially the debate about more support for carers

(Colleen Ewart, Patient/Carer Representative)

“The organisers gathered an impressively wide range of health care professionals, PPI representatives and commissioners. We were challenged to think creatively about the ways we support people living with this debilitating symptom and areas requiring further research. It was a hugely productive day, we generated recommendations for clinical practice, research and policy. I’m looking forward to participating in the next phase of the project”.

(Jo Bayly, Physiotherapist, Researcher)

The day ended with a summary and networking session; an opportunity to continue the discussions from the day and view the fantastic graphic recording of the day generated by artist Joel Cooper (below). Recommendations generated within the 3 breakout groups will now be synthesised by researchers at the Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, in order to seek consensus in the next stage of the consultation.

If you have any questions or would like to find out more, please contact the project research assistant Lisa Brighton: lisa.brighton@kcl.ac.uk

This event was supported by a grant from the NIHR Health Services & Delivery Research (16/02/18), and the NIHR CLAHRCs in South London and Northwest London. The views expressed in this news item are those of the authors and not necessarily those of the NHS, the NIHR, or the Department of Health.

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