About Panda

PANDA - Patient Alliance for Neurological Disorders Assistance Draft Proposal as of 7/18/03
_______________________________________________________________________________

SYSTEMIC ILLNESS- Multi Organ System Involvement
THE PROBLEM
CLIENTELE: The New Patients: Prevention
CLIENTELE: THE RE-EVALUATIONS: 5+ years
THE DINOSAURS: 10 years+  
TIME LINE (Word)

THE BIG IDEA

     For clarity sake and for establishing a ballpark view of our target patient population, I prepared prevalence rates from the best information sources I was able to find at this date. Sheer numbers warrant another look at community need in Dane county. Also, our design includes a consultation process component for any person in need from anywhere in the United States.
 

Systemic Illness - Multi Organ System Involvement
(US Pop. 2002  281,421,906   - over 18  - 209,128,094)
WISCONSIN Prevalence - THESE ARE ESTIMATES!
 

Disorder                                   WI                     Milwaukee County              Dane County

            #                           (5,364,000)                     940,000                           427,000

a. CFS   422/100,000*             22,366                          3,600                               1,800

b. FM  2000/100,000*            106,000                         18,800                               8,500

c. PP  (US)  1,630,000            27,000                           5,500                              2,500

d. Lupus   50/100,000 -     2,650 -  23,800                450  - 4165                       213  - 1880   
(US) 1, 400,000*                        

e. MS  200/100,000*               10,600                           1,880                                854

________________________________________________________________________________ 70-90% women              168,616 - 189,800             30,230 - 33,945              13,867 - 15,534

GWS: most often Diagnosed as CFS/FM, no available data in WI
Lyme/ Post Lyme: WI - 9 per 100,000 new cases 2000  (CDC) 1.8 million estimate from Lyme Associations/groups
Multiple Chemical Sensitivities: Non reportable 90% or higher overlap with CFS/FM
Sources:
a. Jason, L. 1999 (NIH). Overlap with FM/MCS/PPS/MS
b. National Institute of Arthritis and Musculoskeletal and Skin Diseases 1990. Overlap with CFS/PPS/Lupus.
c. US Public Health Survey 1987 (Paralytic and non paralytic.) Non-paralytic often Misdiagnosed as FM/CFS.
d. CDC, Lupus Association. Prevalence varies greatly by race, ethnicity. Overlap with FM.
e. ME Society - WI Prevalence. Prevalence varies by geographical location. Overlap with CFS.

THE PROBLEM:

    Our collective patient population deserves a compassionate medical community who will not let our lives slip by unnoticed. Because of the lack of comprehensive medical care coordinated with social services, clients with complex, systemic illnesses have poor outcomes. They feel invisible. 

     MD’s are overwhelmed. Many understand the hardship of patients with these illnesses, but try to ignore their own compassion because they cannot be an MD and a Social Worker, too. The current system seems to be set up to pit patient against doctor. 

     CFS, FM, MCS, Gulf War Illness, Post Polio Syndrome, Lyme, Lupus and MS are newly recognized illnesses relative to other diseases that have been established for a longer time. Even though there are tests for some of these conditions, there is controversy about overlap, primary diagnosis, secondary diagnosis, (Dysautonomias, Diabetes, osteoporosis and so on) and treatment protocol. Currently, delivery of accurate educational and informational materials to medical professionals and patients is either nonexistent or so fragmented that no one has the time or energy to sort it all out. MD’s tend to think patients want a magic bullet and patients think that MD’s are ignoring their loss of health and livelihood. With these two theaters of operation, participants have unattainable expectations of one another. We think that the design of PANDA will stop this. The plan addresses the needs of people involved, health care provider and patient alike.

     Because of issues of mobility, fatigue, cognitive impairments, and debilitating illness symptoms, plus environmental restrictions, and these patients have difficulty accessing what they need. Oftentimes, due to their limitations, they may have lost the ability to access, communicate, and/or follow up on self-care and advocacy. For example, we know people who do not pay their taxes because they are unable to sort, sequence, organize and file papers, let alone fill out forms. These are people who functioned at a high level, but they linger without help and spiral downwards to a survival level. We think that the preventative aspects of the PANDA design will close this sinkhole.

    Professionals trained to look at the whole body and mind best serve the needs of this patient population. We have found that the expertise of a health care social worker, OT, PT RN, NP or a PA invaluable to people with a systemic illness. Unfortunately, referrals to specialists seem to be a first or second contact before the patient has had a thorough evaluation. This is costly, time consuming, and not useful unless a clear picture emerges where a specialist needs to look for a specific differential diagnosis. 

    We believe that the PANDA design, which focuses on front-end services while providing state of the art medical care, is best for our patient population. To look at this design, I divided clients into several categories based on illness duration. Also, because we are by no means health care experts, we understand that the ideas may be innovative to us, but tried and much more complicated that what we state here.

CLIENTELE: The New Patients: Prevention

    The utopia outcome is for people to avoid becoming chronically ill and disabled. The target outcome is to improve quality of life. (Both outcomes can be measured by using objective methods.) New patients must have a thorough evaluation in the early stages of illness. Much depends on patient history and nature/duration of current symptoms. Currently, people hop from one MD to another. This is costly to the system, time consuming for the patient, health care staff, and not productive. With a careful intake process, we think this drain on the system and strain on the person who is sick and getting more ill with all the hauling around, can be avoided. 

     Early thorough evaluation.  What does thorough mean? Rather than assume the patient is well and needs time, maybe the assumption should be that the patient is ill and with early diagnosis and preventative measures, recovery is expected. Some might feel that this shift in thinking will cause people to adapt illness behaviors, but we have no proof of that. Perhaps this is one issue that has prevented the medical community in general from acting on our behalf rather than reacting to the lack of scientific evidence? The fact is that a new onset of long lasting symptoms in a formerly healthy person causes fear. Fear makes people feel worse.

First contact:  Intake

     The intake worker must listen, assess, and reassure the patient. A checklist determines: acute or chronic, duration, symptoms with top 3 or 4, brief quality of life evaluation (QLE) to include functional capacity, family/friends support for daily living, finances and so on. Intake workers need to learn HOW TO ask these questions in a conversational tone. This is reassuring AND invites a continued relationship with PANDA. Intake workers must determine if the person is in danger and quickly make a referral. As with other agencies dealing with illness and disability, second contact, securing history and making an assessment, must have options. The intake worker offers a home visit, or phone session to a person who is very ill and/or has no family/friend support. Intake worker sets up a time, assesses if the client has chemical sensitivities, and specifically asks client to write the appointment time down in a prominent place. {COST - as long as workers are trained, no medical experience is necessary. Social work, students - interns etc. could gain experience. CFS/FM patients who are highly qualified, but unable to leave the home to work on a consistent basis can be hired to do this.}

Second contact: Caseworker discovery  

     Securing a medical history through a home visit by an LPN/health care social worker or someone with equivalent medical knowledge plus superior communication and observation skills has advantages. 2 hours up front could save hours acquiring records and getting accurate information. Patients with severe exhaustion and cognitive problems have inconsistent functional abilities and will not, without help, provide what is needed for a complete history. Also, if the intake QLE shows that the patient is at a survival level, an in home assessment will save time in the end. 
    
     A phone interview, necessary if the patient lives a distance from Madison, would require that forms be sent ahead of time, so that the ill person has a copy to look at. Also, A phone interview could take two hours. These PANDA Case Managers need the credentials mentioned above, but could work part time from home and only come to the facility to meet the client at THIRD CONTACT.
    
     History form - There are many fine history forms available that are designed to root out background that might otherwise be overlooked. A form needs to look at factors that may indicate a problem in early stages. This sounds simple, but if it were, people with paralytic polio as children would not have a CFS diagnosis today and be prescribed aerobics 3 times a week, a treatment that will cause harm to already damaged neurons. Acute or Chronic pesticide exposure is another example of a background experience that might shed light on immune system function. We understand the controversy with these issues, but to improve quality of life, medical professionals must have the puzzle pieces nearly together before they can see the picture.
    
     The Case Manager prioritizes needs with the client. They set up appointments according to those priorities. The Case Manager leaves a Meriter PANDA folder at the home. The folder is brightly colored...something easy to locate. Inside is a calendar with appointment days marked, clinic information, the name of the caseworker and so on. Transportation issues are examined as well as the client’s ability to find a trusted friend or family member to come to the appointment. If no one is available, the Case Manager attends appointments with this client. A release of information is signed for any current lab work and the caseworker sends this request immediately.

Behind the scenes: team meeting

      The Case Manager shares information with the THIRD CONTACT person, a PA or an MD, depending on need, and with an Intervention Worker who is responsible for networking on behalf of this client with other community agencies. This gives other team members a heads up on the scope of services needed. For example, if a patient falls several times a week and has no food in the fridge, or forgets to eat, the team already knows that an MRI, CAT or EEG might be in order as well as work with social services and a nutritionist.

Third contact:  Clinic Appointment

    INTAKE has a list of clients and one day prior to the clinic appointment time, calls to confirm time. The PA, NP, or MD has read the history, talked with the Case Manager and already has an idea of how this patient will present. A physical exam, lab work, and a talk about how the patient is feeling both physically and mentally is important. Referrals to specialists are made if a consult is necessary. The Case Manager helps the patient note these appointments in the PANDA notebook. Depending on outcome, further appointments are set up with PANDA team members who help the patient with medical and social services issues. 

    If the patient lives a distance from Madison, time needs to be allowed for all this energy consuming business to take place in one day. Maybe overnight arrangements need to be made. The patient should walk away with a list of what actions will be taken on her behalf. Those could be a letter to the home town MD giving a diagnosis, confirming a diagnosis, recommending medications or treatments such as saline infusions, and/or treatments that alter lifestyle to include a well written letter confirming total disability “at this time.”

     Currently, the first recommended treatment protocol for all these illnesses is alteration of lifestyle. In the past, patients were told to cut down on work hours, quit work, reduce stress, go to a self-help group, or take a class on coping. Without help, these are unrealistic expectations for someone who is exhausted, has cognitive problems, is managing a home, and is still trying to work. This is not to mention the fear of loss of health and the fear of financial ruin. By the time the THIRD CONTACT is over, the client, and the team will have an individualized rehab plan that offers realistic concrete services.

    A word about Social Security Disability Income, State, and private disability companies. Alone, people apply for SSDI with no knowledge about how to state their case. It’s a waste of precious energy, health care professional, and attorney time to spin the wheel on this one. If the patient had help and knowledge of functional impairments - the meat of the determination process, disability cases would not drag on for years. We may be able to figure out a way to use the Social Security Administration Ticket to Work Program to pay for some rehab services.   

    Also, a shift in thinking is in order. To assume secondary gain is wrong. A high functioning career person gains nothing from lost income, loss of medical insurance, loss of financial stability, and loss of social contact through the workplace. The sooner the patient can begin rehab, the greater the possibility of recovery. Once provided with individualized assistance and tools for recovery, the uncooperative patient, the real malingerer, will soon be discovered and hopefully booted from PANDA.

    I think that the assumption of secondary gain is also wrong for the unfortunate person with a history of poverty. In Dr. Leonard Jason’s 1999 NIH Chicago epidemiology study, his research team found that 90% of CFS patients had not been diagnosed. With a prevalence rate of 422/100,000 in Chicago, I asked Dr. Jason, where are all these people? He said that they are homeless and invisible. Perhaps this is why the Jason and the Chicago CFS Association are looking at a comprehensive care center (CCC) with housing as a priority. (I can send that CCC proposal if you wish.) It is noteworthy that in the San Francisco Community prevalence study (1995), the CDC cited lack of access to health care as the factor explaining the huge differences in minority reporting in community prevalence studies as opposed to the 1994 CDC surveillance report. 

    As far as private disability, our experience has been that the purpose of LTD companies is to not pay, especially when it appears that there may be a long contractual obligation to a person because of chronic illness. Currently we have an MD in our network that was turned down by UNUM. It is public information that UNUM, an international health care insurer, consistently red flags CFS, FM and MCS cases. Lawsuits against the company are numerous, but it is less expensive for the company to pay their legal staff than to pay claims. These social problems are not PANDA problems, but patients need help getting benefits that are usually part of an employee package. Perhaps the Intervention Worker finds a disability attorney who settles for a percentage of the settlement.

     PANDA deals with a clientele that is mostly women, who are underserved, under-represented, and low income. Providing PANDA access may allow racial and ethnic minority populations opportunities that never before existed. (Jason’s Chicago Epidemiology studies also show a higher prevalence of CFS in Hispanic and Black women than in other populations, which makes the case for acquiring funds for underserved populations.)

OTHER THOUGHTS ABOUT THE FACILITY AND STAFF:

     A receptionist coordinator, intake workers, Case Managers and Intervention staff for clients CAN NOT be overworked. Have you ever met a case manager not over worked? NP’s, PA’s, and MD’s must have time to consult and read case histories. The Medical Director also sees patients.

     We propose that a component of PANDA be home visits for those people so severe that they need assisted medical care. This includes MCS patients if the facility and its personnel cannot follow the strict guidelines for exposure that patients must set up in their own homes. Maybe the Case Manager and PA set aside an afternoon a week to do this. Perhaps, the facility contracts out for horse and buggy care. 

 HOW TO PAY FOR IT ALL

    Many of these clients will be on Medicare. Some will have no insurance. Others will have Cadillac insurance. Is there a difference between this and the current situation? A model Community Initiative that uses all city resources, and is front end loaded with team members who are quality of life experts, is going to cost less than what currently is in place.  

     Our Association intends to fund raise public and corporate sources to think-tank and implement PANDA. The model clearly fits the Robert Wood Johnson Foundation health care mission. The RWJ Foundation currently collaborates with the CDC Bureau of Health Promotion and Chronic Illness Prevention and the Arthritis Foundation on one initiative in the state of Alabama. Wisconsin has one of the highest national prevalence rates for patients who suffer from one of 100 different types of disorders that come under the Arthritis Foundation Umbrella. The list of 100 includes FM, Lupus, and Lyme. FM has the highest prevalence rate, is, without doubt, the most controversial, and the most under funded. Perhaps it is time to write grants for our own collaborative effort. 

CLIENTELE: THE RE-EVALUATIONS: 5+ years

    IF PANDA works well, Re-evals will lessen as time goes on. Most often a relapse or onset of new symptoms would bring a PANDA patient back to the facility. New Re-evals would go through FIRST CONTACT. The intake worker emphasizes QLE and current symptoms. If the patient’s need is immediate such as a new onset of symptoms, loss of job, or survival problems like no food, a FLEXIBLE referral process is in order. Maybe the Re-eval will come into the clinic that week for an appointment with a PA, MD, and Case Manager who will work together to see what is needed. So, the SECOND CONTACT and THIRD CONTACT are simultaneous with follow up by the Case Manager for history forms and further QLE.

     What we have seen is that CFS/FM patients can get better even after years of illness. So much can be done for people who have had illness of long duration. Rehab services are invaluable. People with cognitive problems can learn strategies for organizing their lives. Cognitive retraining is another area to explore as well as nutrition and the list goes on. Many people at this stage of illness are isolated. Instead of a support group, small group healing circles can be helpful.

      It is medically imperative to rule out secondary diagnosis. As mentioned previously, people with neuroendocrineimmune disorders can become worse as organs weaken in a fight to maintain homeostasis. Catching diabetes, osteoporosis and autonomic disorders close to onset = a win win for all concerned. Also, attention to primary care is necessary for this aging population.  

THE DINOSAURS: 10 years+

     Since I am a 20+ person with chronic illness and most of the people I communicate with are Dino’s in the business of chronic illness CFS, we can tell you what works, what prevention means and what we wish we had had years ago.

    I think that our CFS and FM patient population presenting at PANDA will be looking for two things. First, diseases and disorders that often accompany chronic illness certainly plague our patients, but are often not diagnosed because of the current misinformation about the syndromes. Consistent primary care could have identified a condition that has worsened. Women in their 50’s tell me they have not had a Pap smear, mammogram or bone density. They forget to ask, are on MD overload, and would just like to live in peace. Yet, with a new symptom, they call our Association. It is common for women to call me about sweats, weakness, and nausea. Is it a night sweat with viral origin, hot flash, a hypotensive event, or an episode of hypoglycemia? Because I dealt with all four at one period, I can ask questions. I am concerned about other treatable chronic conditions being overlooked.

      Secondly, we have people who were state employees who did quit work and were so ill and uninformed that they missed the statute of limitations on their long-term disability and on Wisconsin Retirement Disability. The two I know personally are women in their 50’s with 15+ years of chronic illness. One woman is single and the other married but continuing to live with an abusive spouse. Both have cognitive impairment, one so severe that she is now in assisted living because the agency qualified her under traumatic brain injury. PANDA may be unable to help these people with disability money, but other important social services can be made available to the old timers. Many of us have trouble driving. Is every one aware of women’s transit authority services for the disabled? A few calls to affordable housing projects would help a client rethink ways to make day to day living better, thus reducing stress.

    I am lobbying for all these populations. I have a vision of what could be. I do not see the NIH and the CDC with the hundreds of agencies that spin underneath these institutions solving problems for us in Wisconsin. This is our plot to tend. I see a tiny campfire, twigs touching at the top, leaning in to make a tepee. A fire ignites and grows. A heap of logs, no matter how high, or dry will not get that fire started.  

PAT FERO
Executive Director
WI CFS ASSOCIATION

E-Mail: bp.fero@verizon.net   
Phone: (608) 837-9540
Website: www.wicfs-me.org