The following is part of a series exploring the impact of projects across the Anglican Church of Canada supported by grants from the Anglican Foundation, visionary sponsor for General Synod 2019.
Funds for medicine and supplies play a vital role in improving the quality of life for children with severe illnesses. Never is this more apparent than when providing care near the end of life.
Rachel Neufeld, a nurse practitioner at Canuck Place Children’s Hospice, has experienced such cases firsthand. She describes a current patient—a girl for whom standard medication is losing its effect.
“We’re having to increase and start her on an infusion of a different medication that’s not common,” Neufeld says. “It’s difficult to get our hands on, and we have to make special requests and order specially. But it’s something that she’s needing urgently in order to get her comfortable in her last days.
“Having that available, to not have government boundaries on what we have access to in order to keep these kids comfortable, is huge. That’s the only way we can do some of our job, to be honest.”
The Anglican Foundation of Canada (AFC) has offered key support in this regard through its grants to Canuck Place, a pediatric palliative care provider with locations in Vancouver and Abbotsford, that cares for children with life-limiting or life-threatening illnesses.
More than 765 children with serious health conditions receive care at the two facilities, which offer services including pain and symptom management, family support, art and recreation therapy, bereavement counselling, and end-of-life care. While Canuck Place receives some funding from the B.C. government, more than 50% of its operating costs come from fundraising. Families do not pay any cost for services.
Through its Kids Helping Kids program, the Anglican Foundation has provided multiple grants to Canuck Place in recent years. In December 2015 and September 2017, the AFC offered grants of $1,000 and $5,000, respectively, for medicine and supplies to care for newborns, children and teens with life-threatening illnesses.
In November 2016, the foundation donated $500 to Canuck Place for pediatric palliative nursing pain and symptom management. Most recently, in August 2018, it provided $4,500 for the recreation therapy program, providing severely ill children with adapted camping, skiing, snowshoeing, and fishing experience.
Kelsey Davis, digital communications coordinator at Canuck Place, calls such grants “incredibly important.” She notes that the hospice has seen a 5% increase in children and families accessing its services this year, with clinicians providing treatment for 175 different rare diseases and conditions.
“It’s so important that we have updated medications and supplies and that we’re able to provide the best care possible to our children,” Davis says. “As we continue to uncover some of these conditions and see the impact on children and families, [the impact of grants is] just huge.”
Neufeld, who works at Canuck Place—Dave Lede House in Abbotsford, notes the wide variety of care that many children need.
“These kids are generally medically quite complex,” Neufeld says. “A lot of them have at least 10, 12 medications in a day, sometimes more. They have often less common medications, and those often are quite expensive…. Equipment-wise, a lot of these children have a lot of medical equipment needs.”
Wheelchairs and walking and standing frames are often necessary, including for patients going through physiotherapy.
Most young patients require some form of suctioning—which clears obstructions from a person’s airway and is essential for breathing—and must have portable suction machines with them at all times. Breathing machines are also common, as are monitoring devices for oxygen saturation. Many patients will need incontinence products throughout their lives.
A large portion of the children require feeding tubes, along with bags and formula-type feed. Medication needs dictate the use of multiple syringes every day to draw up and deliver medication to the patients through feeding tubes. In some cases, such as for pain medication, IVs and pumps are necessary for infusion.
In cases related to end-of-life-care, different medications are often required as symptoms worsen.
“We have to often have continuous medications going in order to keep them comfortable, and it can be anything from pain medication to nausea medicine to sedation medicine,” Neufeld says. “It kind of depends on what their needs are.”
Besides funding medicine and supplies, recreation therapy is also supported by the Anglican Foundation. Each year, hundreds of children, siblings and parents attend provincial recreation therapy camps and participate in activities such as rafting or adaptive skiing. An annual program called Summer in the City takes children to different areas around the lower mainland such as Whistler, Vancouver, Victoria, and the Okanagan.
Davis recalls one boy, Griffin, who went on a trip to a waterslide park last summer as part of the recreation therapy program.
“He had just had a quite serious back surgery, and his dad was quite concerned that he wasn’t going to be able to be part of this adventure,” Davis says. “They had volunteer firefighters and our recreation therapists that took him up, put him in the raft, made sure that he was safe going down, and he was just absolutely thrilled.”
“It makes such a difference in the lives of these kids and families…. This is an opportunity for these kids and families to make memories that are going to last a lifetime for them, and those are moments that parents are so passionate about,” she adds.
“Getting to see the look on these kids’ faces when they’re able to do some of these activities that they didn’t think were possible…. It’s because of grants like this that these kids are able to be out in the community and sit on a paddleboard or go on a boat or a waterslide.”