4 years ago today, we lost Greg to a health system that failed him in many different ways.

Since we have tried to honour who Greg was by attempting to match his positive outlook, his honesty and integrity, his sensitivity and care for others, and his tenacity in trying to improve things in this world.IMG_6664_cropped

We believe that on a person to person level, there have been some providers that have been touched by Greg’s tragic story and have learned from it and as a result the patients that they come in contact with may have benefited from this.

We also believe that at a system level, progress has been very slow and in many cases, very limited.

Earlier this year we had the opportunity to meet with the Minister of Health, and now Deputy Premier, Sarah Hoffman to talk about our perspective and to put forward to her, our priorities. In brief form they are:

  • Major system culture change from individualistic focus and top down command and control culture to one of teamwork at all levels and including a full partnership level of engagement with patients and their families.
  • Digitization of all health records, fully available to all providers and patients as necessary to provide care, treatment and positive proactive health management. Along with this, the development of e-referrals and a patient portal that would insure that all members of the health team are fully informed of progress (or lack of) along health care or health management pathways.
  • Embracing and learning from failure with the development of a structure, transparent process and communication throughout the system, of an independent, third party investigation of near misses, or adverse harm events in order to learn from them, and to close gaps in the present system and in an on-going basis into the future.

For us, as Greg’s family, we are very aware of what can, and all too often does happen, in today’s system. It is frustrating that it seems that important changes are a very low priority relative to personal or professional self-interest, and there is little urgency felt by the system people involved. That being said, we also know that there are many providers in the system that feel the same way we do – on example can been seen in our post on eZ-Referral. Some of the education programs at the University of Alberta, the University of Calgary, Dalhousie, and NAIT have also started to review Greg’s Journey and the HQCA Continuity of Patient Care study as an educational tool and we encourage the others to do the same.

As a family, and as we believe Greg would have done in our shoes, we have decided that we are going to shift our focus to informing families and patients about what should be expected from the system and providers in it, and also what to be prepared for until the system does indeed have substantial improvements made to it.

Our first Health Arrows target will be to focus on continuity and after-hours care.

Progress has been made with the clarification of the College of Physicians and Surgeons of Alberta (CPSA) standard (Continuity of Care) for all doctors with respect to after-hours care. The CPSA revised the standard to make clear that organizing and providing for after-hours care was a responsibility of doctors for their patients. It is not optional, it is required. Indeed in Dr. Theman’s (Registrar) words written to doctors in the CPSA newsletter

“Please understand that after hours availability for patients and for critical test results is not optional. It’s not just ‘nice to do’. It’s necessary.”

Dr. Theman also makes very clear that an answering phone message directing patients to call HealthLink or to go to Emergency is not acceptable. We also understand from what he has written, and comments reported in the media, that compliance by doctors is unacceptably low.

We feel that it is important for patients and their families need to be better informed about the  standards and what should be expected from their doctors so that we can minimize the chances of others being caught as Greg was, with breaks in his care, multiple times.

We believe that Albertans should be fully informed and understand what should be organized with you before you leave your doctor’s office the next time.

Please also keep us informed about your experiences by answering this simple poll question.

4 years and counting… Time to shift our focus