Learnings from PINNT
Support & advocacy for people on home artificial nutrition
PINNT has had a significant impact on patient-focused nutrition care in Canada over the past year. In partnership with The Canadian Nutrition Society (CNS) and The American Society for Parenteral and Enteral Nutrition (ASPEN) and The British Society for Parenteral and Enteral Nutrition (BAPEN) we explored the ‘Value of Nutrition during the COVID 19 Pandemic Across the Care Spectrum’ during Malnutrition Awareness Week It was through that work that I had the opportunity to meet Carolyn Wheatley, Chair of PINNT. Her presentation illuminated the patient’s insights and experiences, which informed the development of extremely valuable resources and tools for patients on IV nutrition to address their fears and concerns. It was through this interaction that I got a glimpse of how impactful a patient-driven organisation dealing with intestinal failure and home nutrition could be for patients across Canada.
Based on this interaction and feedback from like-minded patients and healthcare practitioners across Canada, we have formed The Canadian Patient Parenteral and Enteral Nutrition Alliance: CPPENA within the CNS. The Canadian Patient Parenteral and Enteral Nutrition Alliance (CPPENA) is a national group of provincial chapters made up of patients and caregivers living with home nutrition support. CPPENA brings this network together to collaborate on advocacy, education and networking opportunities that aim to have a positive impact on the lives of patients, caregivers and families. CPPENA is currently focusing on adult home parenteral nutrition (HPN) patients, with plans in the future to include pediatric HPN and adult/pediatric home enteral nutrition (HEN) patients. We will focus on strategies to foster communication and education and will aggregate and develop tools and resources. We are undertaking a needs assessment of patients on home nutrition support to get us started and have planned our first virtual meeting for October 4, 2021. Carolyn Wheatley will provide a keynote address and share her passion with our newly formed patient organization.
Thanks to PINNT – we will be looking to your successes to guide our path!
Leah Gramlich, MD, FRCP,
Founding Co-Chair CPPENA