CCHA representing patient interests on Ontario Government CHD Panel
We are tremendously excited and pleased to report that the Pediatric Cardiac Network and the Cardiac Care Network have convened a special panel on the topic of Congenital Heart Disease (CHD) to develop a plan for the provision of CHD services in Ontario.
This panel includes medical professionals from across Ontario, representing both adult and pediatric care. The fact that there is recognition of the need for better cooperation between these two communities is incredibly encouraging to CHD patients everywhere! Furthermore, the CCHA has secured a seat on the Panel, thereby ensuring that the patient perspective will be represented. Clearly this panel is a momentous step in the right direction!
The final report and recommendations of the Panel will be submitted to the Ministry of Health and Long-Term Care this summer.
To be specific, the panel has touched on all areas of CHD, including the problems both the professionals and patients face. It has gone into great detail about the severe lack of funding from the Ministry of Health towards CHD education and research, and the poor remuneration for the professionals who look after us. With this lack of compensation, younger doctors are looking at other, more lucrative areas of medicine.
There was clear disappointment on the panel with the fact that the Heart and Stroke Foundation has not stepped up to the plate and offered any financial assistance for CHD research and education. Because of the complexity of CHD surgery, wait times for CHD patients has been fully discussed as well as the limited hospital resources.
From the patients’ perspective, everything from emotional, employment, pregnancy, and insurance costs to the patients, their families, and to society in general has been included. There also is a concern of the lack of records of health services for CHD patients and a major concern of the serious loss of pediatric patients as they become adults. In other words there is no transition system to help teens enter the adult world. There are many more items on its agenda; far too numerous to recount here.
CCHA is very pleased and honoured to have been asked to sit on this panel as the representative body for CHD patients. We must make sure when the report is finally released this summer to give it all of our support and help publicize it throughout the Provincial Government and the province in general.
We are in immediate need of a volunteer Membership Chair to keep track of our paid and unpaid membership via our website. Experience working with a database would be helpful. The position would suit someone who is detail-oriented, has spare time to devote, and is willing to work with the executive committee and attend meetings. Please email communications@cchaonline.ca if you're interested.
