Almost every American (and global) family is affected by a neurologic diagnosis.
Neurologique Foundation, Inc. (Neurologique) is an organization dedicated to promoting empathetic patient-centered care that is standardized throughout the United States. Neurologique stands on three main pillars of patient care, education and research, backed-up by a foundation of quality assurance, all built for the improvement of neurologic care for the entire community.
1)Patient Care:
Promoting patient-centered care is central to the foundation of Neurologique.
The leading example of this is the Multiple Sclerosis Team Approach Rule (M*STAR), which realigns the patient as the leader of the MS team. Healthcare providers (primary care physicians, MS nurses, MS Physicians, Nurse practitioners and Physician Assistants) are re-positioned as background supporters to the patient, acting more as a resource for help with diagnosis, treatment and coordination of care. The family, community (social and religious), friends, and significant other are encouraged to take a greater supportive role in partnering with the patient-leader.
MS affects individual patients in unique ways, and Neurologique is developing a supportive environment for the patient to direct their MS care through a multidisciplinary team of MS-specialized neurologists, nurse practitioners, nurses, medical assistants, neuro-ophthalmologists, social worker, physical and occupational therapists, urologists and neuro-radiologists.
It is increasingly recognized that underinsured MS patients face unique social challenges, and Neurologique is developing methods to provide social workers/case managers dedicated to breaking down financial barriers to their care. Neurologique is committed to trying to effect real change for individual patients (e.g. the working underinsured) and the system as a whole.
Neurological care and support should not be limited by geographic barriers and Neurologique is committed to developing and implementing online and mobile strategies to create an MS Center without walls.
Multiple Sclerosis is a lifetime autoimmune diagnosis targeting the central nervous system affecting 450,000 patients in the United States (and 2.5 million worldwide). Five percent of MS patients are under the age of eighteen years, and the innovative patient- and family- centered care offered by the M*STAR approach allows and encourages the treatment of children, adolescents, and teens. Neurologique has developed a support group named M*STAR TOPS (Multiple Sclerosis Team Approach Rule Teen and Twenty Outreach and Parental Support) and has encouraged patient directing of the goals of the group. The teens have identified their highest priorities, and even more than research, they have concerns over the low level of public awareness regarding MS and other neuro-immunological diagnoses. Neurologique is currently developing, planning and implementing innovative programs to allow patients to express their creativity and to support each other and the community. M*STAR TOPS is planning a public awareness campaign using local bands to educate the audience about MS and other neuro-immunological diagnoses at a free concert. Other support groups, include MS*YPD (MS Young Professional Development) and groups for special populations, such as newly diagnosed patients and men with MS and Attorneys Interested in MS (AIMS).
2) Education:
The best teaching is that done by the patient himself.
– Sir William Osler, 1903
Education is crucial as it empowers patients to better lead the M*STAR team. Neurologique educates patients both individually and collectively in larger groups as well as on the internet. Patient volunteers are being trained to allow patients to educate each other as well.
Neurologique recognizes the need to educate future physicians and neurologists (medical students and residents), as well as to act as a resource to community neurologists in education and second opinion services.
3) Research:
Neurologist consultants for Neurologique have demonstrated an outstanding track record for development of research and enrollment in clinical trials. Neurologique is developing clinical research protocols geared to improving patient quality of life. Neurologique will be collaborating with an international network of MS Centers allows for the study of genetic contributions to MS. Collaboration with basic scientists is key to the development of translational research. Neurologique is dedicated to ethical research that makes serious contribution to MS patients and their families. Neurologique has a special interest in the relationship between headache and MS and in innovating strategies that each diagnosis can inform the other in terms of pathophysiology, diagnosis, prognosis and treatment.
There is a great interest among patients in the potential use of complementary and alternative medicine strategies. Many of these treatments have never been systematically and scientifically studied, and Neurologique is developing research protocols to conduct trials studying these alternatives to allopathic medicine.
Collaboration is key to successful research. Neurologique acting as a resource to the community of active and potential MS researchers. The SouthEastern MS Consortium (seMSc) is the flagship of the M*STAR Net is the Multiple Sclerosis Team Approach Research Network, which is being developed to allow neurologists to pool resources to advance research for all MS patients.
4) Quality Assurance:Quality assurance is the key to successful implementation of the solid foundation of Neurologique. Patients and families, primary care physicians, and neurologists are surveyed to ensure that only the highest quality of care is delivered.
Neurologique’s central location is ideally suited to serve as a resource for the entire community. Neurologique strives to offer innovative services to all MS patients, regardless of whether they have access to a large MS clinical care center or not. This will be achieved through a modular system, whereby patients can visit Neurologique and navigate through different education, diagnostic and therapeutic modules. A facilitator, much like a museum educator, will help guide patients and other interested individuals through some of the following Neurologique experience modules:
a) Cooling – An example of cooling devices will be available for patients to try on to find the best fit for them. The patient will then be directed to grant applications from the MS Association of America (MSAA) and MS Foundation (MSF) to pay for the devices.
b) Falls Prevention – Balance testing will be used to assess individuals’ risks for falls and preventive therapies will be instituted to rehabilitate patients’ remaining ambulatory and safe for as long as possible. Bone health will be evaluated and therapeutic options displayed.
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d) Relationships – Sexuality is an often overlooked facet of MS care. MS may affect libido (desire), lubrication, erectile and orgasmic function, sensory loss and pain. This module allows patients and their loved ones unthreatening exposure to lubricants and other sexual devices that they might otherwise be hesitant to ask about. Education concerning pregnancy, lactation and genetics will also be presented.
e) See Clearly – MS commonly affects vision. This module will offer the best technologies to diagnose ophthalmologic diseases associated with MS such as Optical Coherence Tomography (OCT) and Humphrey’s digital visual fields.
The core principle of Neurologique’s M*STAR is that the patient is the center of the MS Team. MS care is only going to change dramatically by active involvement of MS patients as leaders in improving the lives of all other patients. This innovative networking of patients and healthcare providers together is called the Multiple Sclerosis Patient Network (M*S*P*N). While healthcare providers use their skills as MS specialists for clinical care, patients are empowered to use their own skills to help each other as well. M*S*P*N means something different for each individual. For one patient, who is a retired financial officer of a bank, it could mean educating other patients about health savings accounts and other financial issues, either in large groups or on a one-to-one basis. For another patient, it may mean babysitting for another couple, so that they can have a monthly ‘date-night.’
Chronic illness affects most American families. Neurologique is dedicated to improving the quality of patients’ lives with Multiple Sclerosis and other neuro-immunological diseases.
Together through Neurologique, we can make the Multiple Sclerosis Team Approach Rule, turn into the Multiple Sclerosis Team Approach Reality.
Neurologique hopes to replicate this success for other neurological diagnoses.