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Call to Action - We need your participation!


Every year, the BC Government’s Standing Committee on Finance and Government Services opens a public consultation for ideas for next year’s budget. For the last two years, our participation in this process has strongly increased attention to ME in BC.


Once again, we are asking each of you to help raise our ME voices to our government officials!


Below are some details to connect and our suggestions as to you what you might include in your participation. With each similar recommendation submitted, the more collective power we have to be heard!


 

Participate here

More Budget info here



 

How to participate:

You can participate by providing written input using the submission form by 2:00 p.m. (Pacific) on Friday, June 16.


What does participation involve:

You will be asked to provide your name, email address and phone number.


You will be asked to name what community you belong to. Here we ask you to write: Myalgic Encephalomyelitis, Complex Chronic Diseases.


You will be asked if you are filling this out on behalf of an organization. Here, you can select no. (If you want to list yes, and list the ME/FM Society of BC, please do. In the section that follows, you can share that you are a community member. Affiliation to us isn’t necessary - we want everyone to participate as they feel comfortable.)


Next, you will have the option to write a 100 word introduction. Here is an opportunity to share how long you have been ill and how ME impacts your life.


You will then be provided the opportunity to share up to three recommendations (maximum 50 words each) along with your explanation for each recommendation (maximum 300 words each). (Should you include more than three recommendations, additional recommendations will not be considered part of your formal submission and may only be reviewed for informational purposes).


Here we ask you to use two of our recommendations; copy and paste the data below into the submission form. Add other recommendations as you like:


Prioritize and fund the development of myalgic encephalomyelitis-specific billing codes for BC clinicians


Explanation #1: ME, is a devastating, chronic, multi-system disease with approximately 77,000 British Columbians suffering from it. It affects children, adolescents and adults of all ages. Currently, BC has one provincial resource for these patients, the Complex Chronic Diseases Program (CCDP). The waitlist for this program has consistently been over 24 - 30 months, since its inception in 2014, and offers a 1-year enrollment for a disease that has only a 5% remission rate, lasts a lifetime with no known cure, and seriously impacts all aspects of life.


Program intake excludes children and is not accessible or structured for patients with severe ME. One single program cannot be the path forward to improved and acceptable care. GPs and other clinicians outside of the CCDP are generally unaware or ill-informed about ME. For those who do recognize ME, there is no ME-specific billing code, so they are not paid to properly treat ME as the full, complex disease it is, with the time needed to provide effective care.


Physicians are also unable today to register a specific diagnosis: at this time, ME falls under the generic diagnostic category of “Complex Chronic Disease” in BC. Having no specific ME diagnostic code hides the prevalence and devastating impact of ME by not tracking ME patients in the system or collecting ME-specific counts and statistics. This lack of ME-specific data in BC impedes access to research funding and negatively impacts clinical priorities. The lack of a specific ME diagnostic code and incentivized billing code only serves to maintain and exacerbate the existing gaps in ME awareness within the medical community, and impede effective care for already desperately underserved BC ME patients.


Prioritize and fund the development of continuing medical education credits, modules or incentives for BC physicians, medical students, and other medical professionals to attend training on myalgic encephalomyelitis.


Explanation #2: In a recent patient-focussed study in BC (www.mefm.bc.ca/our-research), three of the four main issues ME patients identified were: lack of support for disease management, challenges getting a diagnosis, and stigma in the healthcare system. This project surveyed 173 BC clinicians and found that the majority of respondents (139, 80.3%) indicated moderate to no knowledge of ME. Confidence in diagnosing and treating ME was low, with 76 (43.9%) clinicians indicating no confidence to diagnose and 52.6% of clinicians not confident to treat ME patients. Clinicians noted that, despite its prevalence, there is a disturbing lack of awareness and misinformation around ME in BC’s clinical community. Patients express that it can take years to obtain a diagnosis of ME, often being mis-diagnosed, receiving inappropriate or harmful treatments.


Early diagnosis of ME is essential in order to identify the condition, provide appropriate treatment and support, and prevent harm. Early diagnosis can help to reduce the severity of symptoms and improve the quality of life for people with ME. Currently the burden of disease is profound. It is reported that up to 75% of patients are too sick to work, with 25% unable to leave their homes and 61% are confined to their beds part of the time. Early diagnosis would reduce these numbers and allow for better management of ME symptoms, such as preventing post-exertional malaise, pain, sleep disturbances, and cognitive difficulties and the risk of severe disease would be reduced.

A delay in diagnosis leads to increased costs for our BC health system. The challenge to receive a correct diagnosis is an overarching theme to the patient experience. Poor ME education and inconsistent use of diagnostic pathways results in a further deterioration of health in this population.


Prior to submitting:

You will be asked to read and agree to the Privacy Policy of the Parliamentary Committees Office, and you will be asked to consent to having your submission posted on the Committee’s website.


For more information:

Our previous successes in this process:


If you have any questions of this process, please contact us at support@mefm.bc.ca.


Thank you very much for considering participating and raising your voice to our government. We appreciate your support and action on this initiative!

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