An Interview with the Complex Chronic Diseases Program at BC Women’s Hospital
by Howard Searle
The Complex Chronic Diseases Program (CCDP) at the BC Women’s Hospital is a provincial referral centre for BC residents 19 years or older who have symptoms of Myalgic Encephalomyelitis (ME), Fibromyalgia (FM), Chronic Lyme Syndrome or Multiple Chemical Sensitivities (MCS). To obtain a referral, your General Practitioner needs to complete and fax a referral form.
Unfortunately, once referred, you can expect to wait about two years before getting an appointment because there are 1600 others on the waiting list. According to Program Manager Jill Pascoe, the program “brought in over 425 new patients in the last year and continue to work to balance the needs of patients on the waitlist with those in the program who need help and access to our inter-professional team. We continue to receive 65 new referrals a month on average - which speaks to the incredible need for the program and programs like ours.”
The good news is that the CCDP has a training and information program to assist GPs in managing your care while you are on the wait list. More importantly, their assessment and treatment protocols can be found on their website (for ME; for FM), and this information should be helpful to you and your GP while you are on that very long wait list. The challenge, of course, is to: 1) have a GP; and 2) have a GP who acknowledges the illnesses as real and is willing
Neither of the current Interim Medical Directors, Drs Rhone and Chan, are specialists in the illnesses treated at the CCDP, however, Jill confiremd that BC Women’s is “actively recruiting for a permanent medical director.” To this end, the hospital sent professional recuiters to the IACFS/ME Conference in Fort Lauderdale last October, where they set up an excellent booth. Jill is “hopeful that we will have someone in place in the coming months… In the meanitme, any clinical issues/questions are reviewed by the medical team who meet monthly.”
Jill has been very involved in the creation of the collaborative team-based practice which has evolved at the program. This team includes specialist doctors from Internal Medicine and Infectious Diseases as well as General Practitioners, an acupuncturist, counsellor, dietician, naturopath, nurses and a nurse practitioner, a physiotherapist, occupational therapist, social worker and a research program director. You can find a full description of the team here.
Once you are seen by the CCDP, you can expect to work in partnership with this multi-disciplinary team and your GP in developing a plan of care to address your symptoms, and then you will have the responsibility to follow that plan to the best of your ability. Most patients remain in the program for about 18 months, after which your GP will have access to ongoing support and consultations. To know more about what to expect, have a look at the CCDP’s orientation video.
When asked what is the benefit for patients who sign up for the long wait list to be seen at the CCDP, Jill responded: “The CCDP provides access for individual patients to disciplines and help they cannot access in the community at this time. We will continue to seek out options to build capacity in the community and ultimately, try and create innovative approaches to care and access to care in a patient’s community.”
Regarding research being pursued through the CCDP, Jill emphasized that the “research advisory committee continues to actively seek out opportunities to grow the research we are involved in. We have just received ethics approval to start a data registry which will help create a database for future research. We are very optimistic that the research happening in correlation with the program will grow in the coming years.”
With respect to the housing of an illness which affects both men and women at a Women’s Hospital, Jill responded: “The decision to house the CCDP at BC Women’s was one that was made by the Health Authority. The CCDP is an inclusive program and we provide service to people of any gender.”
The CCDP website is an excellent educational resource in itself that has many links to videos and articles on a range of topics such as self-management, pacing, and adopting multiple strategies. While there is a lag, research and knowledge which develops on the frontline of medical research does eventually make its way to influence the information on the website. The hope is that with a new Medical Director, who is a specialist with these disorders, the program can emerge as a cutting edge clinic which can serve as a model for the province and the country.