It’s time to listen to patients and caregivers

Posted on December 21, 2015 in Health Delivery System – Full Comment
December 21, 2015.   Francesca Grosso

Several years ago I wrote an op-ed piece. It began a conversation about the need to cut out duplication and bureaucracy in home care and ensure that more resources went directly to patient care. The experience, however, was not pleasant. I was personally attacked by powerful health system insiders who were protecting the status quo and the Community Care Access Centres (CCAC) system. So I decided to shut up.

Thankfully, other journalists didn’t. They provided a strong voice against a system that is not working for patients. Legislators Christine Elliott and France Gelinas formally requested that Ontario’s auditor-general take a look. The A-G’s report confirmed the many concerns raised over the course of years and corroborated the facts I’d presented in a special report on CCACs, whose responsibility it is to organize home care for patients. Eric Hoskins, the current minister of health and long-term care, has listened and has promised bold change.

In health care, the end user doesn’t actually get to decide the services provided,

The unfolding of this entire CCAC issue has exposed a much bigger problem in the way health-care delivery is designed throughout Canada — that is, the choke-hold that powerful provider organizations and their unions have on decision-maker perceptions at the expense of the patient and caregiver.

In health care, the end user doesn’t actually get to decide the services provided, how they are delivered, who gets paid and how much. Those decisions are often the result of tough negotiations between government, providers and their unions that exclude patients and caregivers.

Change is needed. A patient ombudsman is a terrific start. I worked with Christine Elliott on health care and on her 2015 leadership campaign as her health policy advisor, and she is a truly inspired choice as the province’s first ever patient ombudsman.

Positive change requires patients and caregivers to be at the table in a substantive way to shape policy on the front end. Individuals have nowhere to go to suggest policy changes. As a result resolvable issues fester until someone dies or worse, contacts the media. Policy decisions must be informed by an unadulterated, unfiltered patient voice communicated directly to decision-makers.

I have spent many years as a health policy insider. I am also the daughter of a former physician and hospital chief of staff. I know more than I care to about the intricate ways the system works and why, who gets funded and by how much. I have been guilty of accepting status quo and even justifying it, when I was the director of policy to a former health minister. That is who I was.

It isn’t who I am now.

My perspective changed years ago because I became a caregiver and navigator for loved ones with horribly chronic and acute conditions. It has allowed me to participate in their patient journeys at every stage – from appointments, surgeries, home care, and applications for various supports. I came to experience the very policies and structures I had defended as a policy maker. As I travel these journeys with my patient partners, I am often left scratching my head and thinking: “Who the hell designed this?”; “Oh my God, I can’t believe I defended this!” And finally, “Why didn’t I change that when I had the chance?” It is the regret of many who have worked in positions of influence, after they leave office.

I regularly come up against nonsensical processes run on the “don’t call us, we’ll call you” principle that is so characteristic of our system. People waiting forever to be identified as eligible for programs that could provide real help and actually save the system money too. Self-identification is shunned.

I hear what we, the patients and caregivers, want and what we don’t want from the so-called experts favoured by the government of the day. Often the “findings” upon which these assumptions are based stem from projects that were created without any real patient and caregiver input. I have seen first-hand where privacy issues were leveraged by powerful groups to ensure that charities couldn’t fundraise amongst former patients. As a result, we have fewer stop-gap services available. As if that makes sense.

I started making a list of some fixes; things that are obviously not patient friendly but that could be changed, some easily. There are lots of opportunity to fix things if you aren’t afraid to break some eggs.

In the Ministry of Health in Ontario, for instance, we have 16 assistant deputy ministers of health, each charged with important portfolios: community care, hospitals, drugs, etc. It is high time for an assistant deputy minister of patient and caregiver experience. This high-ranking official would be charged with ensuring that patient and caregiver priorities, preferences, and experiences inform policy decisions so that the dog is wagging the tail and not the other way around. That ADM will toughly negotiate the list of preferences with his or her counterparts and have the unenviable job of communicating back to the patients at the table where certain asks are not possible.

I look to the new year with optimism — and am working to arrange a meeting with senior officials at the health ministry soon. Hopefully, I can bring my voice as a caregiver to the table. Hopefully, I can take all the knowledge I have about the intricacies around policy and harness it to help change the things I know can be changed. And I hope our health minister will walk this journey with me and the millions of others who are also patients and caregivers.

National Post

Francesca Grosso is a board member for Patients Canada and a former director of policy to an Ontario Minister of Health.

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