17 Mar 2020

The online meeting led by Professor Irene Higginson (Palliative and End of Life Care Theme Lead at ARC South London) and Professor Stephen Barclay (Palliative and End of life Care Theme Lead at ARC East of England) brought together over 30 attendees including clinicians, academics, charities and patient and public representatives from across the UK.

The virtual meeting provided a useful platform to enable timely discussion regarding the current COVID-19 situation. Colleagues from NHS England, Public Health England (PHE) and the Association for Palliative Medicine (APM) provided an update on COVID-19 from their respective organisations and the work they were currently doing in response.

Attendees discussed how palliative care could best support the ongoing situation. Some suggestions included rapid input into guidance on symptom management, communication, care and treatment of COVID-19 patients, understanding bereavement outcomes and support for bereaved family members. One public attendee, a family carer, emphasised the impact and role of informal carers, and further highlighted the challenges of patients who are currently living with chronic illness trying to continue to manage their care in the community at this time.

We are continuing to engage with patients, carers, family and members of the public to understand their experiences and to identify the priorities for palliative care and rehabilitation research at this time. We have been utilising our Cicely Saunders Institute online patient and public involvement forum to keep a dialogue going between our academics, clinicians, researchers and patients and the public, and to facilitate involvement while we work remotely. The online forum is free to join, and we welcome patients, family and/or public members with interest in palliative care and research to get involved.

We will also be sending frequent mini newsletters to our patient and public representatives during the next few months including updates on our work, interesting articles and resources relating to palliative care and rehabilitation, and opportunities for involvement. If you would like to join the Cicely Saunders Institute mailing list, you can do so by getting in touch with Halle Johnson at csi.ppi@kcl.ac.uk