If you are a new Physical therapy practice in Massachusetts, beware.  Most likely, you will be unable to get insurance credentialing.  This will mean you will be unable to take insurance, people will need to pay out of pocket and you will not be successful.  Sounds crazy unbelievable, right?

Unfortunately, it is true.  Insurance companies especially Fallon and Tufts have put a quota on the number of ancillary and support service providers in a given area.  I have wracked my brain as to the  rationale to this policy.  Do they think if they let all be credentialed it will ruin the neighborhood?  Or do they think if they admit all into the club, ancillary services will pop up like Dunkin Donuts ( for all non Massachusetts residents, Dunkin Donuts is just about on every corner)? That there will be a physical therapy  or optometrist practice on every corner?

The fact of the matter is, if you look at the number of physical therapy practices in a given designated area, you will generally find that  many practices are owned by the same company.  Therefore, the amount of actually owners are cut substantially.  However, the insurance companies only count the total number of sites.  This type of policy limits the scope, speciality and availability of practices to the consumer.

It is not a cost controlling mechanism.  The same amount of of ancillary services reimbursement will exist whether there are five or twenty five practices.  It is based on the number of consumers seeking services.  The insurers cost is not increased.

Credentialing everyone will not flood the market.  Successful practices are built on available resources, location, expertise, referrals and reputation.  The market will help to regulate the success and failure of businesses.  The market should be the controlling factor not the insurance companies.  It is not fair to create  a policy similar to wanting Red Sox season tickets.  I think there is a 25 yr waiting list as tickets are passed to families.  Practices will often include their credentialing as part of the selling offer.

Insurance companies should not have the ability to limit services to control the market.  By controlling the market, they stifle competition.  This is so Boston like with its history of big bosses and mobsters.  Where is the evidence based data that shows by limiting the number of ancillary practices, consumers are happier, cost is contained and the community benefits?  I can’t find it.

Health is a very private matter.  Health information is handled differently by everyone, especially a new diagnosis.  Some people tell everyone while others may keep to themselves or only tell their immediate family.  There is no standard for how to respond.  It is personal.

The internet offers loads of websites with personal descriptions, experiences and feelings of  diagnosis, disease processes and treatments.   It may be easy to read but can be hard to live and discuss with others.   I  understand both sides of this coin.

There  are many reasons to keep new health information private.  The most basic reason is not to deal with peoples reactions.  If a disease process has been stigmatized, like HIV/AIDS or  mental health issues, people often have misinformation and the reactions will reflect that.  I had a relative who contracted Hepatitis B before the immunization was available from unsterilized dental instruments in India.  The medical profession at first glance, insisted it was from IV drug use or unprotected sex.  This was not the case and to this day the first question from a new doctor or NP is “were you an ex IVDU?”

There is often need for a person to filter the impact of a new diagnosis in order to deal emotionally with the possible treatments and life changes.  It is not easy to explain to others a personal process.  I belief people reach out when the time is right.   That time may be immediately or months later.

In my job as an advocate, I let people tell me what is important.  I understand the need to maintain control of this information.  I request the information, I need to get the job done.  If I need more information, I ask the client.  I respect the clients right to privacy.  I think it is a matter of building trust about how I will use the information.  I am a firm believer in the HIPAA laws and always tell my clients give me what we need to get the job done.  I follow this concept because so much of our lives are public.  At a persons most fragile time, it is important to offer control of information and support.

A new study showed a retrovirus  called MLV was found in chronic fatigue research subjects.  I was quite happy to read about this study from NIH because people who suffer with it are often stigmatized.  Many medical professionals don’t support it as a diagnosis.  It has been considered a diagnosis of exclusion. Meaning since nothing else fits, lets call it Chronic Fatigue.  In essence, many medical professionals don’t belief the debilitating symptoms and think the patient needs anti depressants.

If you are one of those patients, life becomes an endless search for someone who believes you and will offer some treatment.  There are few primary care providers who accept this diagnosis and it can cause much tension between patient and doctor.  On first presentation the PCP hearing the symptoms will do the usual work up.  When nothing comes back abnormal, the patient is left with the often spoken, let’s wait or I don’t think there is anything else I can do for you.  Since a Chronic Fatigue diagnosis consists of of list of criteria, most PCPs are unable to offer it as a diagnosis.

Patients are frequently forced to look outside traditional medicine to find any support or treatment.  Complimentary medicine has embraced Chronic Fatigue as a diagnosis and does offer treatments.  However, it is all out of pocket.  Most medical professionals who accept Chronic Fatigue as a diagnosis charge as high as $600.00 for the first visit and order many lab tests which are often not insurance covered.

This study doesn’t mean much will change for treatment or in medical circles in regards to Chronic Fatigue.  It will generate more research and possible treatment options.  It will take time but with positive result, people with symptoms may get a diagnosis and not be stigmatized.

Danielle and her partner Spencer have been clients since March.  The other day she was telling me about the day and it was very insightful.  I asked her if she could be a guest blogger.  Here is her first blog about her journey.

I am a 25 year old social worker and I just received my masters this past May. I live in York, Maine and grew up in New Hampshire. I entered the social work because I always wanted to work in a profession that would directly help others and advocate for those in need in order for them to receive the support they deserve.  My work tends to be with impoverished individuals suffering from mental illness and addictions.

I graduated with my bachelors in social work in 2007 and did not know that my life as a young adult was going to change within months. Since 2008, I have been on this long journey, that as much as I would like to say, I would never wish on anyone, I am glad I am on. Some people  call me a caregiver but honestly, I never think of myself as one. I am doing what I needs to be done to help my boyfriend work towards healing.  And it is a lot of work, but I am on a mission. I can not  even explain the emotional roll coaster I experience with my partner on a daily basis and I am not even going to try to explain it all.  I will say it is intense and frustrating, yet amazing.

I am in awe of my 25 year old boyfriend who was diagnosed with Ulcertaive Colitis in 2008.  He tried every medication within a year to curve his UC symptoms but surgery was needed and his whole colon was removed. Since then it honestly has been surgery after surgery and let down after let down by health care professionals and our health care system. I know now from our experiences, it is a messy health care system.  We really need to be sharing our stories with each other in order to validate the struggles and support each other with our new knowledge. My boyfriend is really struggling right now and I am too. Every day we are coordinating appointments, refilling medication, and trying anything to help him get better and I can tell you: if I am not on top of it just for one day: we lose a day.

I have a wonderful and supportive family that consists of a mother, father, brother, sister, sister-in-law and my sister’s boyfriend who are there for me and my partner always, but not even they fully understand the ins and outs that I am learning through this long experience. While I was in graduate school, this past March I went to the Dominican Republic to do some volunteer work and my boyfriend ended up in the hospital. My family decided my boyfriend and I really needed some more objective support and that’s how I meet Hari. She our patient advocate! Yep, even I a social worker needed support because what I am experiencing is totally out of my element and any knowledge and support I can get, I learned to take.

Hari is the one who suggested I write this all down. And I am starting to understand and agree with her. She is pretty much the best. I like to think we really work as a team. She shares her knowledge and supports me and my partner and she has this huge desire to listen and learn from those she works with in order to continue to understand her clients.

I think I will write more later.  The entries I am interested in writing about will include how I am learning to problem solve and how I am learning to help my partner and myself feel empowered.

I am probably going to ruffle some feathers.  I do not support the movement to have patient advocates credentialed,  at least not at this juncture in time.

As a nurse and family nurse practitioner, I have sat for two separate credential exams.  I have worked many clinical hours in a variety of settings.  I decided to become a patient advocate after experiencing the frustration my clients were having navigating the healthcare system.  Enough! It isn’t the right time.

Here are my reasons for going against the flow; the WHO, WHAT and WHY?

1.  Why?   I don’t think  it is the way to secure validity in the market.  Advocate work began as a direct result of  the broken healthcare system and lack of patient oriented thinking.  I am not interested in being validated by the existing system.  I do not wish to be credentialed so I can get insurance reimbursement.   I have spent way too much time working on insurance  forms, appeals, negotiations and credentials in my 25 years to want to add another layer.  The argument may be that consumers are looking for a credential seal of approval.    That question has never come up for me with clients.  Maybe  it is because of my existing credentials.  Bottom line is, I am working for my clients not the system.  I suppose the question is will there be fakes who take money and don’t do anything?  Probably but accreditation won’t stop that.

2. Who?  I take pause at the thought of who will set the criteria for the credential process and the industry it will generate.    The beauty of the patient advocate is the unique personal relationship with the client.  If we start to categorize, standardize and  quantify this, it will get lost.  Most people I have networked with, have left jobs to do this work because it is a passion.  Who will paint the picture of the advocate , will it be based on empowering of clients and who will benefit financially.

3. What?  The question calling to be answered is what is a patient advocate.  The definition is evolving with the healthcare system as it reaches to correct itself.  What is the rush to set another layer of bureaucracy and cost?  Why take the chance that the essence and fabric of a patient advocate will be diluted by rules and regulations at this time when we don’t know the long term system outcomes?

The cultural dimensions of the advocacy movement is just being born.  Let’s take the time to nurture it and not  fall into the pitfalls of the current existing credential processes.  Unfortunately, I know it is a movement that easily gathers support.  It is like the Emperor’s new clothes. I fear it will create more barriers.  The profession needs to build slowly and not rush to look like everyone else.  In time, perhaps, it will be a necessary.

Healthcare reform is giving the consumer some say in their healthcare.  It is why it had to happen.  Up till now, the insurance companies have held the consumer hostage.  They determined who would be covered, what services you were entitled to, how much you had to pay and at what the top amount allowed.  As consumers, we had come to accept the parameters with little hope of change.

I have read the healthcare reform bill.  I like many aspects of it but not all.  What is hardest for me is the timelines of implementation.  For instance, elimination of pre existing conditions from all plans start in 2014.   Many of my clients who don’t have employer plans, are still facing life without insurance.   The new high risk pools mandate six months without insurance. This means people coming off COBRA will have to wait six months. This is hard for someone with cancer.  The older state high risk pools are so costly and many have long waiting lists.  My clients are still be refused insurance for the simplest of problems.  Anything in the past, whether cured and not reoccurring, causes a denial.

A friend of mine, has a strong family history of colon cancer.  Fifteen years ago, he had a polyp.  With regular preventive colonoscopies, he remains healthy.  When he enrolled in a new plan, Anthem Blue, he was told the colonoscopy would no longer be covered because he had a preexisting condition.  What part of prevention did they not get?  Would it be more cost effective for the insurance to forgo the $3-4,000 cost every three years and  pay for colon cancer treatment? Ummm, let me think… Luckily, under the new preventive care guidelines, it looks like he will be covered.  I don’t imagine it will be simple for them to agree, but having an advocate on board will make it easier.

I am glad consumers are going to get an opportunity in every state to have external appeals and insurance companies have to tell customers of that option.  Only 34 states have external appeals currently.  The amount of external appeals are small considering it is an appeals process from an independent source.  Some states, like California and New York,  offer statistics on their insurance sites on the number of external appeals and results.   What is interesting about external appeals determinations is it can approve/deny either part or all of the request.  This appeals process is very important to consumers and will now be part of the healthcare/insurance landscape.

Living in Massachusetts, I know first hand the stress on the medical system with mandated insurance.  It has not decreased ER visits which I think is the result of limited primary care practices and visit availability of medical professionals.  The state government is constantly fighting with the insurance companies (great for bloggers) and insurance companies are tightening what is covered.  I know people are happy to have coverage but for those outside the poverty level, it is still very expensive.  I have to say life with mandated insurance,  is both positive and negative.  I wait to see how the rest of the country implements the changes.

I have a young client who has been suffering from an ulcerative colitis that 2 years ago required surgery.  Since the initial surgery, there has been one complication after another.  In the last four months, since I came on board, he has had two surgeries and one procedure.  His pain level reached record highs before the most recent surgery and he lost about 48 pounds.  Everyone kept saying telling him he needed to eat.  He would try but the system wasn’t adapting to the changes and it just came out.  What was happening was he had malabsorption and he was malnourished.  He was fading away in front of us. I kept hearing doctors tell him, “there isn’t anything  else we can do for you.  You have to just start eating. You just have to adjust.”  I started to get the feeling everyone was thinking it was in his head even his weight loss and anorexia.  Of course he was traumatized to have his life in such chaos but no one wishes for severe pain, constant diarrhea, nausea and fatigue.  It was absurd.

One day last week he hit the wall. At his last hospitalization he was so anemic he needed a transfusion and  dehydrated.  He went home with a temporary ostomy  and some hope.  Within a week, he was back in the ER severely dehydrated.  It became apparent it wasn’t in his head.  It was in his gut.   Does anyone  need any more evidence?  A doctor known to my client who had been helpful  in the past came forward.  He stated he was going to take the reins because my client was suffering from malabsorption and his sub speciality was in that area.  He also said he was going to be in charge and create a plan with the help of national experts to change the course of health.  He spent time explaining exactly what was going on, what had to happen and how he could be depended on.

My client’s partner and caregiver who has been so amazing through all the problems, with tears running down her face, explained it was good news but hard to hear after the years of promises.  She said she wanted to trust the plan.  The doctor kindly said, he thought she needed to be less reactive and work as a team.  At that moment, I realized that the medical profession doesn’t always understand the profound emotional impact and loss of trust these experiences generate.   Why should she put more trust in this plan even if sounds logical and reasonable?  The healthcare system had pushed her to this point of exhaustion and mistrust.  She was being an empowered patient  by putting herself on the line with honesty and integrity.

I do believe the sincerity of the doctor to assist my client back to his regular weight and better quality of life.  He wants to create a team and supports my role.  And his plan is sound.  I think it is time to stop using the word trust in medical relationships.  It puts too much pressure on both the medical professional and the client.  The word trust implies that the the medical professional is always thinking in the best interest of the client and decisions on care are therefore the best possible options .   It is an enormous responsibility to have every client’s best interest covered. Practices are busy and offices are stressed.  I think MDs and NPs want to always have the clients best interest in mind but with standards of care and evidence based thinking it boxes them in and doesn’t happen.  I think blind trust in the medical profession is not healthy.  As the saying goes” Trust in God but tie up your horse.”

It is time to embrace the  empowered patient. The relationship is built on  a team approach, mutual respect and communication.  Let your patient help you make decisions when it is possible.  Don’t create the barrier of “trust” .  It is too difficult to maintain.

I have been thinking  recently about how the role of patient advocate evolved.  A reason we all know is the complexity of the healthcare system with the many layers to shift through.  There is also the need for an advocate to clear the path to get sooner appointments, second opinions, research medical options, provide insurance analysis, bill negotiation and care coordination.  All important is the support needed when all seems too difficult.

Today, I realized what is truly broken in the system and why an advocate’s role has evolved.  The advocate and the empowered patient have evolved because nobody has our back. You have to vigilant about all aspects of your care.  Any new medications, diagnosis, results, procedures or surgeries, must be questioned because in the end the medical profession and ancillary services are beyond overwhelmed, exhausted and litigious to care.  Don’t get me wrong, there is not general insensitivity but rather a profound change in the culture of our relationships that a medical professional feels necessary to be a successful practitioner.  Where does this leave the consumer?

I had the unpleasant experience of my doctor not writing a prescription correctly, one I had been taking for at least a year.  I never saw the prescription because  it was sent via eprescriptions to my local pharmacy.  She had written the wrong amount of pills by 15 days.  When I called the pharmacy, I was told “the prescription reads for this amount.  Maybe she changed the prescription.”  I knew that wasn’t the case.  I asked them didn’t they see what I had been taking and notice the error.  I was told ” oh we don’t question the doctor’s amounts written.  You can call the doctor.”  I wasn’t going to let the pharmacist get off that easy because I know they could have called the doctor.  I said as a consumer, it would be nice to know my pharmacy had my back.  The words just tumbled out because I did want them to care about my prescription beyond just being a filling robot.  When I was in family practice, I got pharmacy calls to verify prescriptions.  All doctors/NPs  do.  The worst part is now I will have to pay an extra $50 co pay even though it wasn’t my fault.  And no one cared to have my back.

Patient advocacy is about having my client’s  back.  I am like the hawk, perched on the huge elm tree, watching and waiting in anticipation of the need to swoop down in an instant.  I am prepared to be vigilant to changing needs and momentary crisis with compassion and kindness.  I know it is my job to be a caring, thoughtful and accurate navigator.  The medical profession used to provide this service but it no longer does.  It is time for them to acknowledge the change and accept the patient advocate as an asset to their clients care.

I was lucky I caught the error before I ran out of medication.  What if it had been  a misdiagnosis or wrong surgery or medication?  Who would have my back?

The final journey begins the day you realize your loved has taken a turn for the worse and is declining.  You find yourself calling the doctor more frequently reporting health status changes.  The doctor and staff agree there are changes.  You wonder if the decline is going to continue or if there will be a return to better health.   You don’t want to think about what a continued decline means.  It is too hard.  Then one day, the doctor or staff member, probably the social worker, approaches and says “Have you thought about Hospice?”  For just a moment your world slows down and you realize, there will be no return to better health.  Your first reaction may be is there something to be done medically that hasn’t been done?  It is natural.  It is not wrong to ask the question or seek further medical opinion.

In the best case scenario, a conversation has occurred with your loved one about end of life issues.  This  would include whether you have a “Do not resuscitate order”and a Living Will is in place.  These documents allow for no extraordinary measures to be taken if that is desired.  Your wishes are usually respected but in some situations, The EMTs or hospital will make their own decisions.  You need to have a copy of these papers.

Hospice can be a wonderful experience even for people in nursing homes/assisted living and especially in the home.  The purpose of hospice is to provide comfort for the client and family as well as the best possible quality of life for the client.  Hospice can provide wonderful emotional support at a very difficult time.  A good hospice will  relieve some of the burden.  It takes a certain kind of person to work in hospice.  This person understands the suffering and pain for all involved with death and dying and works to create environments of compassion, patience and support.

There are specific criteria for services.  There usually has to be a diagnosis of six month till the end.  Many insurances cover hospice including medicare.  Not all hospices are the same.  The most important is the medical, emotional and spiritual support to be provided.  Here are some questions to ask.

Who is on the hospice team?    MD, RN, CNA, social worker, spiritual counselor?                                                                                Do I get to choose what services will be available?                                                                                                                                          Is a nurse oncall 7/24?    Does an RN visit daily                                                                                                                                              Will I still use my primary care or is there a hospice doctor?                                                                                                                        Will there be an aide or supportive care?                                                                                                                                                           Will hospice honor the families wishes? Especially about pain control?                                                                                                  Do you have  any references or families I can speak with?

One of the critical aspects of any agency is their reputation.  Ask your friends, PCP and colleagues.  I good recommendation is the kindness and compassion for the client and the family as well as response time for any calls.

Hospice in a nursing home/ assisted living facility  can be  more difficult.  The facility may have an arrangement with a specific agency.  It does not mean you have to use them.    Medicare provides hospice services with limited aide care.  If the situation becomes critical, round the clock aides will be provided under continuous care.    This will be maintained until the situation stabilizes, or  hospitalization occurs.    As an advocate, I am vigilant with the hospice team to make sure the facility patients are getting the proper care.  It doesn’t always happen as I like.

There is a wonderful article   in the most recent issue of The New Yorker by Atul Gawande.  He is a surgeon in Boston and speaks to the issue of Hospice. http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande . I recommend it!

Yesterday, the daughter of a client called about her mother’s swollen hand and arm.  She had been to her PCP the day before and  he said it was arthritis or a bone fracture.  He did some lab tests and sent her for xrays.  The following day, the lab test were all normal but my client’s arm was more swollen, painful and redder.  The daughter called the PCP who said she was fine.  She asked me if I could speak to the PCP.  I called him.  He said she had arthritis and he couldn’t do anything else for her.  She could go to the ER if she wasn’t satisfied or an orthopedic doctor.

I told the daughter to take her to the ER, now.  She did and three hours later, the daughter called with the news that her mother had a cellulitis (an infection under the skin)and was being admitted.  She will need IV antibiotics until the infection is controlled.

How can I express my horror at what her PCP did?  How could he mistake cellulitis for arthritis?  This can be a life threatening event.  One more day and my 80 year old  client would have ended up in the ICU.  I would be doing some intense praying.

There is no excuse for letting an 80 year old woman suffer.  I find many PCPs and specialists are so dismissive of my elderly clients complaints.  It is as if because you are old so you don’t get the same attention.  There is a quick jump to the crazy old person or maybe she has a form of dementia.  My client is smart, educated and knowledgeable of medicine.  When she gets a new diagnosis, she reads about it and makes a list of questions.  She has all her medical records and knows all her medications.  She annoys medical professionals because she asks specific questions and wants real answers not a brush off.  She is the original empowered patient.

I am hoping the treatment will be successful.  This occurred outside Houston, Texas.  It happens everywhere.