Unmet Needs Committee
In early 2018, members of our Society’s Board formed the Unmet Needs Committee. Our goal was to create an advocacy campaign targeted at the BC provincial government and other relevant agencies to obtain equitable health care, home care and income support for ME and FM patients throughout the province.
Our first action was to determine priorities for for the Society to address over the next few years. At the top of the list was health care for patients with ME. Given our limited resources and stamina, we decided we could only tackle one goal at a time. We also considered that ME and fibromyalgia are both complex illnesses that are difficult for many people to understand. We agreed that we should first present the case for ME, the least known and understood of the illnesses, and then to move on to bring in fibromyalgia.
Work of the Committee
Our first job was to create a Backgrounder to present to the government.
Next, we contracted Paul Gallant, a professional health care consultant with extensive health care industry networks and experience, to advise us on our campaign, including our Backgrounder.
In September we were ready to request a meeting with the Ministry of Health (MOH) (read our initial letter). And then the waiting game began.
Victoria Meeting: December 2018
Finally, After many emails and phone calls, we got our meeting on 7 December.
Ted Patterson, Deputy Minister of Health, was to attend, but at the last minute we were disappointed to learn that he was not going to make it.
Two members of our committee and a local ME patient attended in person, along with Paul Gallant. One member was too ill to attend, and was accommodated by phone.
We all told our stories and presented our issues.
We unambiguously spoke of the harm caused to British Columbians living with ME because of the lack of access to knowledgeable health care.
We presented a package of various printed documents to each official, including:
National ME/FM Action Network’s 2017 special issue newsletter
A copy of Jennifer Brea’s award-winning documentary “Unrest”
Letter from New York State Department of health to New York State
health care professionals regarding ME
Open letter from the Workwell Foundation regarding their
You can read our short report on the meeting here.
Response from the Ministry
Ted Patterson finally responded on 26 February. Read his letter here.
To say our we were disappointed would be an understatement. We had hoped that our message for this May awareness was that the BC Ministry of Health (MOH) was partnering with us to help British Columbians living with ME to receive equitable health care. Instead, we were told that our community does not matter to the Ministry. That whatever is been done right now is enough for those living with ME.
Follow-up call with the Ministry
In a follow up call with MOH, Cheryl Martin, Director, First Nations & Rural Primary Care and Chronic Disease Management, and Thomas Guerrero, Executive Director, Corporate Issues and Client Relations acknowledged that the letter from Ted Patterson was “cold”.
However, they argued that MOH does not do advocacy, and that making ME a priority would amount to advocacy for ME.
They also claimed that the Ministry cannot tell doctors what to do. And, in any case, they claimed, there is no consensus on how to treat ME.
Clearly no-one at the Ministry had read our Backgrounder or looked at the package we had sent them.
We informed them (again!) about the Canadian Consensus Criteria. There is in fact agreement on how to diagnose ME. There is no cure, and there are is no consensus on treatment. But this is the case for many illnesses, such as MS, Parkinson and Alzheimer’s Disease. Health care professionals in BC need to know how to diagnose ME.
We reminded them that according to Minister Dix, BC Minister of Health, under the budget statement in his published Service Plan of February 2019,
“The Ministry of Health has overall responsibility for
ensuring that quality, appropriate, cost-effective and timely
health services are available for all British Columbians…The Ministry
also manages the medical services plan which oversees most
physician services and Pharma Care. “
In other words, prioritising ME to ensure that British Columbians living with ME receive equitable health care is doing their job!
We were finally able to extract four commitments from Cheryl and Thomas:
They would follow up with the British Columbia Protocol Advisory Committee (GPAC) to connect us with them in order to develop guidelines and protocols for ME;
They will follow up with Health Link BC - a major resource for the British Columbia health care industry - to update that website;
They will look in to how we can create and implement ME protocols for BC hospitals; and
They will check to see if and when new diagnostic codes for ME and FM will be instituted.
We join with ME Victoria Association and Millions Missing Canada to create BC's first Millions Missing action. The event will be held on the steps of the Provincial Legislature on Wednesday, 15 May 2019 to raise awareness about ME and demand equitable access to equitable health care and financial support for British Columbians living with ME!