International Patient and Family Centred Care Conference #1

There are over 700 people registered for the conference. There are 300 people from nine provinces across Canada and many people from the US. There are people from ten other countries to share experiences and insights including Afghanistan, Cameroon, Denmark, Qatar, Sierra Leone UK and Australia.

The conference started with a traditional Salish welcome and blessing from Elder Roberta Price.

The health professionals attending the conference work within and across disciplines with patients and families. There is 170 patient and family advisors. These individual are partners for improvement and transformation and grateful the work they do to improve health services. Need to build the depth of partnerships with consumers so that we can improve the safety and quality of health care.

Now I had thought I would tweet throughout the conference but there is no wifi! And as I have come from afar I have not organised internet access from my phone. So, instead I will blog. Excuse the typos and incomplete sentences. I will correct these (in time).

Mr TerryLake, Minister of Health of British Colombia

Health care developed around big buildings where you went when you were broken and you came out foxed. So focussed on moving patients through the big system that we forget about the person experiencing care and their families. When we put patients at the centre of care we change the dynamics. It is a cornerstone in the Ministry of Health strategic plan and they strive to deliver care that is built around the individual and not around the provider and not about the administration. He has committed to a sustained focus on improving services to meet the needs of families. Moving from disease focus to patient focussed and recognised that there will need to be a change management approach to support health professionals as well as patients and families to embrace the change. When you are trying to get through your day and get all your tasks done you can be task focused but you need to stop and think about the ae that you are delivering. Put the brakes on and think in the moment.

Patients as Partners in BC focuses on helping patients manage their own care and gave them an opportunity to learn more about the health system.

They have navigators for indigenous people as well as cancer care. They provide support for things like arranging transport, medication and discharge planning. Interesting, I think the role of health navigators is a growing area as care becomes more complex and fragmented across settings and we become sicker. We have certainly been talking about the need for this role in Canberra. Mostly these roles are filled by RNs (known as care coordinators) but I think there is scope to have consumer peer workers too.

Better together campaign proud to be blazing a trail to remove restrictions on visiting hours. St Pauls Hospital (Providence Health) are first in BC to drop the visiting hour restrictions. Patients and families engaged in help to fill in the blanks and advocate on their behalf. Infection rates drop when visits visit freely and staff engagement improves, rates of fall decrease and there is a reduction in medical error, emotional hard inconsistencies in care and transition to other settings.

Dianne Doyle, CEO of Providence Health Care

Culture of care and the deep commitment of Providence Health Care to patient and family centred care. This started 4 years ago where IPFCC reviewed Providence work and assessed structures and provided recommendations. Strategic planning identified patient centred care as a strategic priority using the experience of the Institute and developed an action pan. This is about bedding patient and family partners and set a plan to have 100 people in these roles across the organisations. The Board has two patient and family partners and sit as members of quality and accountability committee of the board and also a Patients as Partners. This group developed the Family Presence Policy (visitation). They have also considered how their staff present to visitors and families and patient and standardisation of uniforms has been introduce and name tags so that names and roles is easily identified., Communication is important work and they get a great deal of feedback,. They have developed patient information and cardiac is doing journey mapping. Code Help is an opportunity to ensure that 24/7 that if they feel that they are not getting the are that they need that they can phone to make sure their expectations and needs are being met.

This is not about public relations, they are serious about reflecting on patient care. The retreat with senior staff includes patients and family members to share their stories about how the service failed their families.

There are three areas they are developing: started bed site multidisciplinary handover, now include patients in recruitment of staff and developing indicators to monitor impact their work is making

Ms Leilani Schweitzer - https://twitter.com/LeilaniS

Firstly, let me say that this was one of the most remarkable speeches I have heard. And in my 15+ years in the consumer movement I have heard many stories and listened to many speeches about th need to improve the quality and safety of health care.

What follows are my notes from Leilani's speech.

Leilani shared the story of her loss. Her 20 month old son, Gabriel, died. She started by saying that on Thursday he was sick and on Tuesday he was dead. Alarms interrupted her sleep. She had already experienced sleeplessness at the local hospital in reno before they had been transferred. She was relieved they were at Stamford. The nurse turned off the sound of the monitors next to his bed so taht they could both sleep a little bit. Unknowingly the nurse, acting out of compassion, had done more, she hadn’t only turned off the alarms next to Gabriel's bed but also at nurses’ station.  So when Gabriel’s heart stopped beating there were not sounds to alert staff to this. Several minutes had passed and she was jerked awake to a room full of people and panic. This happened as there was not a safeguard in the alarm system.

Leilani is a health care outsider, like me she does not have a medical degree and has not spent countless hours in medical rotations. She says she could never undertake the difficult job that doctors and nurses do. Her son’s story is her credential and she tells it to make a difference. She tells the story to shift peoples’ thinking and because, she says, we need a new narrative.

But where does improvement and change happen? We are stuck between the way things are and the way we want them to be. We want our heads in the clouds ad our feet firmly on the ground. How to we shift the ground and bring the two together?

Leilani shared her wish list – now I didn’t see this due to my poor eyesight but I will certainly check it out as there was laughter in the room.

Choose to listen. Choose to be transparent. You don’t have to agree to the status quo.

We cannot have a health system that is based on the needs of clinicians. We need to have a system that meets the needs of patients, clinicians and administrations. We need to value everyone’s insights and perspectives. Clinicians’ motivations cannot be ignored. They bring their struggles motivations and humanity to the hospital everyday along with their skills and expertise. We need to honour their role as we need to value the experience and insight that consumers bring.

This is the only way we can understands the issues and find real, long term solutions to these intractable problems.

Sometime the power is not in the story but in the telling of the story. We need to encourage people to tell their stories and encourage staff to listen. We need health services to hear every story and not only the loudest and not only the ones that confirm their assumptions. These stories are the truth of the environment. We cannot listen to them in isolation because they all overlap. We need to track the issues

Leilani works as Patient Liaison, she works with people when there are has not gone according to plan. She has learnt that the first telling, the first quick account tells us very much. It is only after many tellings and research that we learn the whole story. People need to understand all aspects of their medical care, particularly the parts that did not go according to plan. She works with the vulnerability of patients and families as well as staff.

Stamford investigated and let all other hospitals using this system know about the dangers. They looked further than the nurse’s actions.

Leilani advocates for transparency as it helps us identify system errors and act to fix them. Transparency is a lens. It can help us understand where we want to go, where we need to go.

Understanding the environment is critical to improving the quality and safety f health care. In Gabriel’s case there were issues around the programming of the alarms, alarm fatigue, and a nurse’s call for help was not responded to,

 A young doctor spoke nervously at her. This doctor was hopelessly unprepared to deal with the situation. Leilani eventually told her to shut up. Death is a full stop for a patient in a hospital bed bit it is a terrible beginning for everyone left in the room. Hospitals should extend their care to these people as fall out is slow, painful and toxic. It is also contagious.

We need to stop protecting patients from understanding the dangers in health care. We are the most untapped resources in health care, we have so much to offer as we have so very much to gain. We cannot help if we do not know the full story. Change is so slow and this can be discouraging although Leilani is optimistic.

This was a spectacularly powerful story full of forgiveness, compassion and kindness. There were many tears in the audience.  I felt privileged to hear her speak

Darlene Cox

@darlenecox