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Family matters
Public engagement key to enhancing
health care
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By Bob Armstrong
May/June 2018

Who knows a patient best?

Is it the health-care professional who sees them for a few minutes at a time? Or is it the patient and his or her family members?

The Winnipeg Regional Health Authority believes it is the latter. And it also believes the insights and experiences of patients and family members can be used to help drive improvements to the health-care system.

In order to make that happen, the Winnipeg Regional Health Authority has launched a number of advisory councils. Consisting mainly of people who have experience using health-care services, these councils have been established in a number of areas, including mental health, home care, patient and family matters, long-term care, ethics, and emergency care.

The groups typically meet several times a year, from September to June, to discuss a variety of issues, depending on the mandate of the particular council. For example, a program-specific advisory council, such as the one for home care, will provide client and caregiver/family perspectives to program leadership on various matters as part of the process in developing policies for the service. Meanwhile, general councils, like the Patient and Family Advisory Council, will weigh in on broader issues ranging from complaint management to the development of policies on family presence, collaborative care, and violence prevention.

These advisory councils are part of a larger patient and public engagement strategy that builds on the Region's commitment to developing a patient-centred model of care. In addition to advisory councils, which deal with hospital- or program-specific issues, the Region has also created Local Involvement Groups (LHIGs) - citizen panels that deal with system-wide issues related to the delivery of care.

Wendy Singleton, Manager of Quality Improvement, Client Relations and Engagement for the Region, says advisory councils are designed to help health-care administrators and providers get a better understanding of what can be done to improve the patient and family experience within the health-care system.

"It really is putting into practice what we know - that family members know their loved ones the best," says Singleton.

Engaging the Public

The Region's advisory councils play a key role in helping to shape policies in various areas and programs. But the Winnipeg Regional Health Authority also relies on other mechanisms for gathering public input, including Local Health Involvement Groups. Click here to learn more.

Sometimes messages coming out of engagement activities help shape fundamental change or the development of a new concept. At other times, family and patient engagement provides a reminder that seemingly little things can go a long way to making health care a better experience.

"Sometimes it's about the small gestures that show your compassion, that show you're listening," says Singleton. "Just to have somebody acknowledge you if it's a long wait - to say, 'I know you've been waiting a long time; is everything okay?'"

Photo of DeeDee Budgell
DeeDee Budgell with a photograph of her late husband, Harry.

Winnipegger DeeDee Budgell has been a member of two advisory councils - the Patient and Family Advisory Council and the Long-Term Care Advisory Council - since her husband, Harry, who died last year, suffered a stroke about 10 years ago. She says the councils have dealt with a number of issues, including the importance of encouraging family presence and collaborative care in decision-making, a subject on which Budgell has a lot of experience.

Family presence policies are designed to encourage health-care providers and the people who are most significant to a patient to talk about how best to work as a team. For example, a patient may wish to have their loved one participate in their appointments, remind them of questions they've had, or be there to provide comfort when care is provided.

Budgell was a vital part of Harry's team. As she explains, her husband had aphasia following his stroke, which affected his ability to communicate with doctors and nurses. As the one who knew Harry best, Budgell was able to provide important insights to the care team.

On one occasion, for example, Harry had a fall at home and was taken to the hospital. He'd been checked out and was about to be discharged, but he kept pointing to his knee and foot. Budgell knew that something was wrong, even though X-rays showed that the knee and feet were not damaged.

"I said, 'I think we really need to get an X-ray done - I think he has a broken hip,'" she recalls.

A subsequent X-ray revealed that Harry had a broken hip.

"Family members can really pick up on things," says Budgell. "That's why it's important that family members are encouraged to communicate those things."

On another occasion, Budgell noticed a slightly bluish tone to Harry's lips. When she brought this to the attention of the nurses, Harry was given blood tests that showed his blood oxygen levels were low. Since she was spending three or four hours a day with Harry when he was at the Riverview Health Centre, she was able to pick up on details like that - or mood changes, such as a lack of interest in music therapy - and pass on her observations to the nurses or doctors.

Budgell says hospital staff welcomed her input. When Harry was in St. Boniface Hospital, she was invited to join nurses for their mid-afternoon "huddle," during which outgoing and incoming shifts share notes. At Riverview, she spoke regularly with doctors and nurses. That involvement from families can help ensure that patients get the most responsive care possible.

"Family members can really pick up on things. That's why it's important that family members are encouraged to communicate those things."

The lessons learned from the experiences of Budgell and others have also been used to make life easier for family members going through an emotionally challenging time.

Budgell tells the story of one night when she received a call from the hospital about 1 a.m. urging her to come down because Harry's condition was worsening.

After dressing and calming herself as much as she could for the drive, she arrived at the hospital and went to the front door, only to find it locked. Then, when she tried to enter via the emergency entrance, she and her daughter had to check in with the security guard. She left her daughter to explain their situation to the security guard and hurried to Harry's room. The lesson from that night is clear: when a family is going through something as stressful as a middle-of-the-night trip to see an ailing loved one, anything to reduce additional stress would be welcome.

"If you call the family to come down, can you let the person know what door to use and tell the security guard that they're coming?"

In addition to serving on the advisory councils, Budgell has shared her experiences with student nurses. "After you tell your story, the student nurses ask a lot of questions," she says.

Budgell has even participated in a Region staff training program to promote collaborative care, a concept that encourages health-care providers to work with other professionals, patients, clients and family members to deliver better care.

In Budgell's experience, people working in health care want to hear from family members and patients, and welcome insights that will help them improve care.

"They are passionate about health care," she says. "When I go to the St. Boniface Hospital, I go up to the wards and talk to the people who used to take care of Harry. They're wonderful people."

Singleton says the advisory councils will continue to play an important role in discussing and developing family presence polices for the Region, as well as other matters that can enhance the patient/family experience.

"Health-care providers have an important perspective on patient and family care, and it is easy to become very focused on our own work," says Singleton. "The people who experience our care have a different perspective. One that is just as valuable, and, at times, critical in providing safe patient care.

We are at our best when we work together with patients and families. Engaging patients and families from the front line of care to system-level planning is the best way to a compassionate, safe and consistent experience for all."

Bob Armstrong is a Winnipeg writer.

Read More

Réal Cloutier, Interim President and CEO of the Winnipeg Regional Health Authority, says public engagement is a key element of a patient-centred health-care system. Click here to read more.

Join Us!

There are many ways to get involved and become an engagement volunteer with the Winnipeg Regional Health Authority. Here is a list of various advisory councils working within the Region.

  • Emergency Department Patient Advisory Council
  • Home Care Advisory Council
  • Ethics Council Public Engagement Group
  • Long-Term Care Advisory Council
  • Mental Health Advisory Council
  • Patient and Family Advisory Councils (There is one regional and three hospital-based Patient and Family Advisory Councils, as well as a virtual Patient and Family Advisory Network)

To learn about these advisory councils, get contact information, or download an application form, click here.

PFAC at Work

The Patient and Family Advisory Council (PFAC) is a group of people with experience using health services. The purpose of the PFAC is to advise the Winnipeg Regional Health Authority on the design, improvement, and delivery of services that will enhance the patient and family experience of health-care services in Winnipeg.

Here are a few of PFAC's recent activities:

  • Participation in a regional consultation on continuity of care. The goal was to help identify priorities for safe patient transitions (i.e., patient from emergency department to home) within the health-care system.
  • Provided advice on regional policies regarding healthy eating environments, complaint management and reporting: health-care experience. Additionally, patient and family advisors attended staff education sessions to share their experiences navigating the health-care system.
  • Guided the revision of patient education materials for the Region's blood services team (i.e., My Iron Guide - Intravenous Iron Therapy).
  • Development and participation in the delivery of education resources for health-care staff on resolving patient and family complaints, culture of safety, and communication skills in stressful situations.