BC Nursing Support Services - Families need SUPPORT, now!

BC Complex Kids Society, on behalf of families receiving Nursing Support Services (NSS) for their children with medical complexity, delivered an urgent letter to Adrian Dix, at the Ministry of Health, 30 days ago. We have yet to see any meaningful response.

Nursing Support Services is a system of home care support that is a lifeline for children with medical complexity, many who have life-limiting conditions. These supports have eroded to a state of being harmful for both children and their caregivers.

Prior to this letter, our families have been individually advocating with our healthcare teams, NSS coordinators, and MCFD social workers for years. For more robust support. For flexibility in the use of these supports. For autonomy and engagement in its delivery.

NSS Principles & Philosophy of Care states to "promote child/family participation in their home and community," and “believes in a child/family’s right to self-determination and choice”. Families are not experiencing this philosophy in real-time.

Caring for a child with medical complexity is a 24/7 role, far beyond that of caring for a well child. Our families run mini ICUs in our homes, with ventilators, oxygen, IV and subcutaneous infusions, feeding tubes and pumps, suction machines, powerful prescription medications, etc. The list goes on.

If our children were not discharged from hospitals, their hospital stays would be extensive and expensive. If they were placed in the foster system, their care would be financially compensated for, and delivery of respite and further supports easier to come by.

Without nursing support, our children cannot safely attend school, childcare centers, or in some cases safely ride in the back seat of a vehicle. Yet the barriers to receiving the support they are allocated are becoming more and more onerous, or support is entirely unavailable.

Lack of support is having a profound impact on our families ability to cope, let alone thrive. Our families report severe financial hardship, being unable to return to work due to the inflexibility to use NSS for work hours, coupled with their child’s precarious health needs. Most of our families have extensive medical trauma that affects both parents/caregivers and siblings of our children with medical complexities. Yet without support to care for these complexities day-to-day, our mental health is in decline. Other challenges include being unable to adequately give care & attention to siblings, marriages under significant stress, loss of careers, and medical treatment being canceled/delayed (due to no home support for the recovery period).

Our families are in crisis.

We urge Premier Eby to get involved - and for Minister Dix, the Ministry of Health, & Nursing Support Services to address these issues.

We call for transparent communication, program accountability, & true engagement with families.

We call for action.