The Kaye Edmonton Clinic (KEC) Interstitial Lung Disease (ILD) Clinic provides patient centered care for Albertans living with ILD. Through multidisciplinary care, education and collaboration with Alberta Health Services (AHS) Home Living, they focus on keeping patients living well in their communities, supporting patients & their families from diagnosis to end of life. At the core of this collaborative care model, to maximize quality of life, is a dedicated clinic nurse coordinator who patients and caregivers can access outside of their clinic visit. This nurse facilitates symptom management, education and care coordination before, after and during clinics. She knows the patients, their needs and their families. She liaises with Home Care providers to resolve crises at home and avoid emergency visits. The urgent and timely responsiveness to calls during working hours and collaborative problem-solving approach with Home Care have helped reduce reliance on hospitals and ERs. Most importantly, this support from the clinic nurse enables patients to live well and pass away with comfort and dignity in their own homes. All people living with a chronic disease understand the value of access to health care providers with expertise in their illness. The KEC ILD clinic embodies AHS core values of compassion, accountability, respect, excellence and safety. The KEC ILD clinic’s care model has demonstrated reductions in acute care use and in deaths in hospital. The Canadian Foundation for Healthcare Improvement recognized the KEC ILD Clinic with a dedicated clinic nurse coordinator as an innovation in palliative and end of life care in 2017.

The situation today

The 2-year external funding for the ILD clinic nurse coordinator will expire in December 2018, and at that time, the services provided to this complex patient population will be negatively impacted. These patients will no longer be able to access a dedicated nurse, who is knowledgeable about their particular disease and specialized needs. This essential support for living well and dying at home will be gone. Without a dedicated ILD clinic nurse coordinator, other community health care providers will no longer have access to expert advice. Without ILD care coordination by a dedicated clinic nurse, the care of ILD patients will be in jeopardy and all the gains in quality of life, dying and death will be lost.

We request:

Alberta Health Services funding to support a dedicated ILD nurse to achieve the standards of care for ILD patients and to deliver care in line with AHS vision, mission and values.