Does the patient voice matter?

Summer 2015

It’s an unfortunate truth that not every patient experience is positive.

Complaints surface surrounding the quality of care, flawed processes, or lack of compassion demonstrated by health-care providers.

As LHSC is focused on working to provide patient-and family centred care – care rooted in mutually beneficial partnerships among patients, families and health-care providers – these complaints are taken seriously, with many used as learning opportunities.

In fact, patient input plays an integral role in shaping the delivery of health care at LHSC and impacts all facets of care – from the hospital culture to the policies that govern the way care is delivered.

It’s important that all experiences, both positive and negative, are not simply ‘heard’– but that the whole story of a patient’s journey is truly listened to and learned from to better understand how to improve the way health care is provided.

LHSC patient and family advisors are volunteers who are patients themselves – or they have a family member who is a patient. Many of them originally came forward to express their concerns after having had negative experiences at the hospital and were then asked if they would be interested in taking on a more formal role as an advisor.

As a volunteer, they may serve on committees for many months or years, or as individuals involved in a variety of short-term projects. Currently, over 100 LHSC patient advisors are helping to ensure that the patient perspective informs hospital care delivery and decision making. By sharing their stories, opinions and expertise, they are creating incredible change that will ultimately help improve the experience of patients and families to come.

The following are the real-life experiences of patients and family members who have shared the wisdom of their own challenging experience and have helped make a difference at LHSC.

Kirk

Patient and Family Advisor role(s): Patient Experience Coordinating Committee, Patient Advisor on the Steering Committee of Perioperative Care Project

My patient experience at LHSC:

In 2012, I found a lump on my throat and I had a gut feeling that the prognosis wouldn’t be good. Unfortunately, I had to wait several weeks to see a specialist – and when I did, I wasn’t prepared for the news of stage four neck cancer.

At the same time as receiving this critical diagnosis, the health-care team gave me a lot of information very quickly and there was a flurry of forms to sign. I was overwhelmed.

Throughout the process of treating the cancer – from the delivery of the diagnosis, surgery, radiation and learning how to speak again, the flow of communication and the way that difficult news was conveyed could have been better. My rights as a patient – such as a right to a second opinion – and what to expect post-surgery, could have been better expressed.

The change I’ve been a part of:

I’ve been able to give back to the organization that saved my life. I have great respect for the surgeon and team that helped me – but part of the emotional and mental healing process is to talk about the things that didn’t go well.

Every new staff member at LHSC must go through corporate orientation, which includes a presentation that I’m invited to speak at. When I share my story, I can see the impact of my experience on the audience’s reactions. I also share insights on how to deliver great customer service. For instance, it’s important to observe first, listen, and then speak. The way health-care providers go about their day-to-day job can have a real impact on someone’s life. I think that there is a cultural shift that’s happening. People learn through shared experience – change comes from the top down and both hospital staff and leaders appear to be committed to improving the patient experience.

Mim

Patient and Family Advisor role(s): Founding co-chair of the London Regional Cancer Program (LRCP) Patient and Family Advisory Council. Current member of the Patient Experience Coordinating Committee and lead advisor for the Patient and Family Storytelling Program.

My patient experience at LHSC:

My health care journey with Hodgkin’s Lymphoma (a form of cancer) was a roller coaster ride. When you get a critical diagnosis you become extremely vulnerable. You feel voiceless, fragile, powerless and dependent on strangers. During my treatment, there were times when a health-care provider was performing a procedure and I was trying not to scream because I didn’t know what was going on. But there were other times when someone would take a moment with me. It could have been as simple as holding my hand, just being quite sincere, but in those moments you can form a positive bond really quickly and this provides incredible emotional support.

The change I’ve been a part of:

In my role on the advisory council I was an active participant working with staff and leaders to create change in the London Regional Cancer Program (LRCP). We held workshops that brought staff and patient advisors together to better understand what patient-and familycentred care means. A great success is our highly effective storytelling program, where patient advisors attend grand rounds, nursing orientation and other meetings to share both positive and negative patient stories. Everyone has a chance to listen and learn, which helps reinforce what is going right and where there is room for change. Data that we’ve collected shows that communication with patients has improved as a result.

I was also invited to be part of the Crisis Management Committee that formed when the chemo drug dilution issue arose. My LRCP Advisory Council co-chair and I worked with management and health-care providers on the best way to inform the public and staff on what had happened. I was on every tele-conference, where we talked about ensuring the messages were honest and consistent. We held evening meetings so patients and their families could be shown what happened, how it happened and allowed them to ask questions, express their concerns and receive accurate information. Everyone came together and it became a 24-hour a day job to reach patients. We needed to apologize, explain, and let them know that this will never happen again.

It’s really rewarding to be a part of this. To share your story and to give meaning to a journey that was painful and traumatic for your family. To role model this for my kids gives value to what I’ve been through.

Leslie & her son, Ryan

Patient and Family Advisor role(s): Family Advisory Council at Children’s Hospital (Chair), Community Advisory Council (member) and Corporate Quality Committee

My patient experience at LHSC: My son was born with a condition called hydrocephalus, and was later diagnosed with hypopituitarism (his pituitary gland did not form properly) and avascular necrosis (loss of blood supply to his bones and hips). He has had several surgeries, including two brain surgeries.

The scheduling of his second brain surgery did not go very well – it was cancelled three times, including once when he was already on the gurney waiting to go in. This was difficult on everyone – having to change work schedules, get babysitters for my other child and most importantly, the psychological impact on our family – preparing a fiveyear- old for surgery isn’t easy once, let alone four times.

It seemed like people didn’t understand our perspective or how this was impacting our family.

Along this journey, I’ve learned as much as possible about his health issues so I can be an active participant in his health care. The re-scheduling issue seemed like a service delivery issue that maybe I could help with.

My desire to get involved was a combination of wanting to give back to a hospital that had given so much to my son and wanting to be part of improving a system that sometimes doesn’t work well.

The change I’ve been a part of:

I joined the Family Advisory Council (FAC) at Children’s Hospital in 2006, with a small group of dedicated parents and staff. The committee offered education and advice to many groups, including hospital staff, on policies and patient care quality and safety. We worked tirelessly to have the patient/ family voice included in as many hospital activities as possible, including the redesign of the Children’s Hospital and Children’s Health Foundation websites. We provided input to the physical design of the new Children’s Hospital location at Victoria Hospital and helped create the Parental Presence at Induction program, which allows parents to accompany their child into the surgical room and stay until the child is asleep.

I still marvel at the dedication of the volunteer parents who, in many cases, had very sick children at home but were so committed to advancing family centred care that they came to meetings, told their stories to clinicians and hospital administration and provided a family voice to many policies and decisions.

Now I am a member of the Corporate Quality Committee and I have once again found that the hospital personnel involved are extremely dedicated to their work and willing to listen to and incorporate patient views as much as possible. I have also learned that the hospital is a very complex place with many different masters. I hope that my contributions can make even a small impact.

Bonnie

Patient and Family Advisor role(s): Patient Advisor – Renal (Kidney) Committee

My patient experience at LHSC:

I was diagnosed with kidney disease in 2004. In 2010, after an unsuccessful kidney transplant I began in-centre dialysis and later started home hemodialysis before having a second successful transplant almost three years ago. I am so grateful for the compassionate care I have received from a wide variety of services in the hospital in spite of a bit of a roller coaster ride in regard to my medical outcomes. Sometimes I feel like a professional patient as I have been such a frequent visitor to the hospital.

The change I’ve been a part of:

Even though some of my experiences have had unexpected outcomes, one of the ways I try to make sense of it all is to find the positive and give purpose to it. If I can help smooth the journey for another patient, then what I have experienced has value.

As a patient advisor, I try to convey a perspective to staff that they may not realize is meaningful to a patient. Those little, seemingly
insignificant words and actions can make a huge impact on a patient’s experience, particularly in a difficult situation.

Since joining the newly formed Renal Advisory Committee, one of our greatest achievements has been to have input on care delivery as well as participation in policy development. We had input into the new renal website and participated in an education day for renal staff. It is evident the hospital is embracing the principles of patient-and family-centred care, as staff are inviting patients to contribute in a wide variety of areas.

There seems to be a whole new culture developing. Although there is a learning curve for both hospital staff and patients in regard to patient centred care – neither one is the final authority, but a team working in tandem to meet the needs of both patients and staff. The work the committee is undertaking I see as a quickly evolving collaborative. The opportunities are virtually limitless and it is exciting to be a part of it.

Shawn

Patient and Family Advisor role(s): Youth Advisor – Child and Youth Advisory Council

My patient experience at LHSC:

My experience with LHSC was always a good one. My Crohn’s specialist was paediatric gastroenterologist, Dr. John Howard (recently
retired). My patient files are full of the doodles he created to explain and simplify what was happening so I could understand it too, as I was just a 10-year-old at the time. He always made sure I understood what medications I would be on, and directed the conversation towards me, which for a young boy wondering why his stomach always hurt, was infinitely helpful.

Fast forward seven years when I exhausted all medication options and needed my first surgery – a total colectomy – and the LHSC teams made my 30-day hospital stay feel more like an all-inclusive resort (albeit not one I’d like to return to).

When I was 18, I came to the Emergency Department because of a partial blockage in my small bowel. When my name was called, they directed me towards the adult side for the first time, which, to my surprise was completely different from what I was familiar with. Although my transition wasn’t terrible, I couldn’t imagine a newly diagnosed 18-yearold making that transition comfortably.

The change I’ve been a part of:

When I was 15, during one of my monthly IV treatments, the nurse told my mom and I that there was a Children’s Advisory Council that I may be interested in joining as a way to complete my 40 community service hours for high school. I showed up to the first meeting in September and met a group of kids and teens that were all very similar to me. The amount of work that we accomplished as a small group of kids still amazes me today.

Some smaller initiatives include changing the colour of the soiled linen garbage bags from clear to mint green (so as to hide the at-times gruesome contents), and preparing the child long-stay kits, which are tote bags filled with age and gender specific toys, activity books and other things that would keep kids busy and comfortable during their visit.

But we also worked on large-scale projects, such as the one I consider to be our crowning achievement – writing the Child Bill of Rights and Responsibilities, which you can now find posted in just about every room at Children’s Hospital.

The Children’s Advisory Council is an amazing group of young people who are volunteering for a better hospital experience for every kid that walks in, and I would highly recommend joining if you’re a kid or teen that wants to make a positive impact in the hospital.

On a personal level, the Children’s Advisory Council has taught me more life skills than I could have ever asked for: self-esteem, public speaking, how to see a massive project come to fruition, and many other skills that I’ve used every day of my life. It has led me to volunteer for the Crohn’s and Colitis Foundation of Canada and presenting my story before a convention room full of people at one of their conferences.

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Bonnie, Patient Advisor – Renal (Kidney) Committee
Kirk, Patient Experience Coordinating Committee, Patient Advisor on the Steering Committee of Perioperative Care Project
Leslie and her son, Ryan, Family Advisory Council at Children’s Hospital (Chair), Community Advisory Council (member) and Corporate Quality Committee
Mim, Founding co-chair of the London Regional Cancer Program (LRCP) Patient and Family Advisory Council. Current member of the Patient Experience Coordinating Committee and lead advisor for the Patient and Family Storytelling Program.
Shawn, Youth Advisor – Child and Youth Advisory Council