Waiting for treatment taking toll on patients with chronic illnesses

·5 min read

Jill Fletcher has spent much of the last year waiting to have both knees replaced while dealing with "brutal" pain after her cortisone shots were reduced to every six months from three to prevent further deterioration of the little cartilage she has left.

"I've been in a wheelchair. I may end up there again before I get going on this," she said of the delay in scheduling her surgery, which would involve the removal of a plate and five screws in each knee from previous operations due to a condition since childhood that resulted in malformed knees.

"Before COVID, it was 'OK, I can just phone, get things set up and it'll be in four months.' Now I have no idea," she said from Renfrew, Ont., about an hour's drive west of Ottawa.

"It's just throwing everything off. It's harder to see the family doctor. I haven't had a physical either. That was cancelled as well."

Fletcher, 58, is among thousands of patients across the country whose procedures have been postponed or cancelled due to the pandemic, resulting in more physical and emotional distress.

She said the wait for a risky surgery weighs heavily on her husband and their two sons who still live at home and help out with more chores but also worry about her declining health.

"I'll be honest, I'm a little bit uncomfortable being in a hospital during COVID, too," Fletcher said of travelling to Ottawa for the procedure. She also feels vulnerable until she has been vaccinated, but that may not happen in Renfrew for her age group until August.

Support programs for chronically ill patients are an essential part of their care, said Eileen Dooley, CEO of HealthPartners, a collaboration of 16 health charities such as the Alzheimer Society, Parkinson Canada and the Heart and Stroke Foundation of Canada.

HealthPartners commissioned an online survey of 3,000 people, including 1,144 with a chronic condition or major illness, and found the pandemic has had a disproportionate impact on patients, 43 per cent of whose treatment has been cancelled or postponed, affecting their quality of life.

It was conducted by Abacus Data between Jan. 9 and 13 and showed 67 per cent of caregivers said they were less healthy overall due to their increased burden, versus 60 per cent of the patients and 57 per cent of all Canadians.

For the total number of respondents, the survey is accurate to within 1.7 percentage points, 19 times out of 20. It's accurate to within 2.8 percentage points for the patients, and 4.2 per cent for caregivers.

Dooley said the charities that connect patients and families, provide transportation to appointments and information on community services have been hit hard by a loss of donations, many of which fund research.

"They provide a real buffer between the formal health-care system and Canadians in terms of being on the front line for support: letting people know where to get assistance, connecting them with others who've had their disease, providing transportation."

Dooley called on federal and provincial governments to provide funding for charities as part of the overall effort to bolster supports for Canadians in multiple sectors that have also suffered financially during the pandemic.

It's not just patients themselves who are affected by delays in treatment and interruptions in support programs — the survey for HealthPartners, says 524 caregivers also responded and that 53 per cent of them reported the pandemic affected their mental health.

Katrina Prescott of Vancouver was so afraid that a visiting health-care worker would transmit COVID-19 to her mother that she ensured everyone coming to their home knew about "the rules" — her strict safety precautions.

A nurse practitioner, a nurse who specializes in wound care, a rehabilitation assistant, a home-support worker and a physiotherapist are among those caring for 69-year-old Kathryn Love, who suffers from dementia and is at high risk of contracting the virus.

Prescott required them to place belongings in a plastic bin and immediately head to the bathroom, disinfect any surfaces they'd touched before washing their hands for 20 seconds and don personal protective equipment, including gloves, which would have to be washed often or cleaned with alcohol.

"When the whole thing happened I thought 'how the heck am I going to let people come in here?' It was a 911. So I came up with a system," she said.

Prescott made the "really stressful decision" to continue having health-care workers in the house as some others in a similar situation cancelled services to eliminate the possibility of their loved ones being infected, she said.

Losing that support would have left her as the only round-the-clock caregiver, which she considered "unimaginable for my survival."

She worried about not having any respite, let alone having time for sleep, a shower or cooking a meal.

Even with help, the emotional strain of caring for a family member who is unable to walk or talk took such a toll on the Vancouver resident that she got extra counselling online.

Prescott said the mental-health implications on caregivers who juggle multiple responsibilities for their chronically or seriously ill loved ones are overwhelming at any time, but a year of greater-than-usual isolation has brought people to the breaking point.

Sherri Mytopher was diagnosed in 2013 with relapse remitting multiple sclerosis, the most common form of the disease that is characterized by a range of unpredictable symptoms including, like in her case, fatigue and numbness in the hands, arms and legs.

An annual appointment with a neurologist who travels from Vancouver to her northern British Columbia city of Fort St. John was expected last May or June but was put off until October, when it was done over Zoom, said Mytopher, 40, who volunteers with a regional chapter of the Multiple Sclerosis Society, which offers support to patients and families.

"I felt frustrated," she said of her concerns about the lack of a physical assessment to gauge the progression of her disease, adding stress is the biggest contributor to flare-ups of her symptoms.

"There's a fear that came with it, like 'When will I get answers to the questions I have?"

This report by The Canadian Press was first published March 14, 2001.

Camille Bains, The Canadian Press