Fibromyalgia: An Environmental Scan
Table of Contents
5.4 Resources Requirements
Resources identified in the environmental scan and with specific input from the key informant interviewees fall into patient and clinical areas. Patient advocacy groups such as “in the face of pain” consistently report that chronic pain too often remains untreated. Furthermore, it results from the lack of clinical intervention not because there are no pharmacological agents for treatment (Pain & Policy Group, 2007). Too often the concerns surrounding pain medication and restrictive regulatory processes impede good clinical practice. Disturbingly, the majority of healthcare professionals have very little and sometimes no formal training in pain management, yet they are expected to manage and treat chronic pain disorders, the outcome is that too many individuals do not get the necessary treatment they need and which is sadly often available (Miaskowski, C., Clearly, J., Coyne, P. et al, 2005). Clinicians are faced with the challenges surrounding the diagnosis, treatment and management of chronic pain and specifically fibromyalgia along with structural barriers such as the amount of available clinic time to effectively provide patient-centered care to patients. Furthermore, the ideal circumstance in providing care is using a transdisciplinary model. This approach requires communication and a broad understanding of fibromyalgia from many clinical perspectives. Clinical education both during preliminary medical education and on-going continued education must provide information surrounding the advances in etiology, diagnostic criteria, treatment and management of CPD. Additionally, continued education must translate from workshops and conferences to the clinic. Many key informants stated that having resources such as a mentor, facilitated communication between specialists and primary care health care team members would help tremendously with the continuing information uptake in this area. One particular family physician stated that he would like to see a contact person made available to him in order that he could easily access quick information and verify his approach to treatment in an efficient and timely manner, likely someone to follow-up with by teleconference. “There is often excellent and very useful information presented at various forums, but sometimes I would like to simply ask a few quick follow-up questions, especially when new pharmacology agents and other treatments are consistently changing” (Key Informant).
Another over-riding theme from the key informant interviews pertained to the limited office or clinic hours available to the clinical team and the absolute necessity of providing one-on-one care for patients with fibromyalgia. Family physicians stated over and over again during interviews that patient education resources were too sparse and it was consistently difficult to spend the time necessary to educate patients about all the different aspects of their syndrome. As an example, one physician explained a hospital based program for patients with fibromyalgia. He realized that he was very fortunate to have such a program in his community and refers all patients who are diagnosed with fibromyalgia. More programs are required as they not only provide patient education, they also provide the patient the opportunity to maintain control of their care by being informed and provide critical social networking and support, which is directly related to positive outcomes for those individuals with fibromyalgia who are able to participate in group processes.
The economic impact of fibromyalgia has been discussed and directly impedes some patient’s ability to access third party treatment options such as physical therapy, massage therapy and other co-pay or out of pocket expenses. A pain specialist interviewed for the project and who specifically deals with patients who no other forms of treatment have provided relief often sees patients who have no choices left in terms of pain control. Overwhelmingly, a majority were unable to get early treatment for a trauma because of socio-economic issues. In some cases, wait times were simply too long and the patient deteriorated while waiting for specialized care. In other instances, accessing health care services is simply a financial barrier. Either way, the availability to both affordable and accessible services would improve an individual’s likelihood of trying a number of treatment modalities in order to successfully find the right combination for success and reduce the suffering associated with fibromyalgia.