Partnership Story: Collaborating with the Live Now Foundation in Russia

On 10-26 February, 2017, Kathy Mitchell, a retired nursing professor from Algonquin College in Ottawa, Canada, and Dr. Richard Sloan, a retired physician who served as Director of the Weldmar Hospice in Dorchester, England, visited the ALS/MND teams in St. Petersburg and Moscow. Their collaborative effort with Dr. Lev Brylev and the Live Now Foundation in Russia was supported by an Alliance Support Grant for partnership travel.

Kathy and Richard’s goals were to share professional expertise related to holistic palliative care, increase skills and knowledge and change attitudes to improve quality of life for patients and families and raise awareness of the complex needs of people with ALS/MND. Kathy and Richard had been asked specifically to teach about multidisciplinary care, patient autonomy and advance care planning–subjects not generally considered in the Russian health care system.

Kathy Mitchell, Richard Sloan, and the ALS/MND team in Russia

In St. Petersburg, a one-day interactive workshop was an opportunity to communicate key issues related to patient autonomy and family and patient assessment.

In Moscow, Kathy and Richard worked with the team to complete home visits with nurse, doctor and translator. They discussed patient assessment and potential interventions with the team. A series of lectures open to health care staff in other departments gave an opportunity for a discussion of autonomy, mindfulness, and proactive self-care for families and the health care team.  

On 18 February, the Live Now Foundation organized a full-day conference for patients’ families and health care professionals to discuss new research, concepts of palliative care, patient support issues and to encourage collaboration between the St. Peterburg team and their Moscow counterparts.

Richard and Kathy established sustainable references by donating print and video resources as well as discussing reliable websites for both patients and health care professionals. They also explored resources to support the psychosocial, emotional and physical needs of families and children.

Public awareness was also increased, with media coverage during the conference.

Lev Brylev, Kathy Mitchell and Richard Sloan are advocates to improve the quality of care for people with ALS/MND and their families in Russia. They are seeking individual feedback from team members regarding change of practice since their visit to evaluate the degree to which the goals of this project have been met. They are committed to continuing the support needed to work toward a world free of ALS/MND!