Dr. [AwesomeSauce];
In May of 2015 you treated me for
a cerebellum based meningioma tumor. You
saved my life. I wanted to thank you for
your time, attention, and professionalism in ensuring my ability to live and
function on any level.
The past two years have been a
journey of ups and downs as I confront limitations, face social stigma, and
learn to cope with continued challenges. One challenge that exacerbated the others is
that of being able to seek and find appropriate aftercare and support. I wrote your office in early 2016 and
expressed my dissatisfaction with the follow-up care and communication received
from one of your associated nurse practitioners, [hewhoshallnotbenamed]. I was put into contact with [clearandconcise] and have
appreciated her candor and clarity. The
difference in care is both startling and disheartening when the two experiences
are contrasted. [clearandconcise] is exceptional both
in her knowledge and in her clear communication. While I struggle with comprehension, my
husband was able to understand what [clearandconcise] explained, even though it varied
greatly from what [hewhoshallnotbenamed] had communicated with us at initial follow-up appointments.
Through many appointments and
working with an exceptional team of professionals at [myhomeawayfromhome], I have been able to adapt to functioning at a basic and
simplified level. I am working with
vocational rehabilitation to recover professionally, and with a team of specialists
to recover functionally. I have
progressed through physical therapy and occupational therapy and can physically
function in most of my daily life. I
continue to work with speech pathology to recover cognitive function and the layered
reasoning necessary for higher levels of interaction. I have adapted to being completely deaf on my
left side and have learned to understand the origins and nature of my continued
tinnitus. I am encouraged by assessments
and support from [sweetestmanintheworld], the neuropsychologist that you referred me to see.
Over this journey I have found
many things; 1. A qualified and experienced neurosurgeon is absolutely vital,
2. Goals and consistent, sustained effort by the patient are necessary, and 3.
Recovery is best done with a team of experienced and supportive professionals
who help to identify and maintain optimum recovery. I find that many do not experience adequate
recovery services and am concerned that while focused on the surgery itself, access
to such services is not utilized as effectively as it can be. Recovery is based upon two standards;
physical recovery from surgery, and then functional recovery with any
associated limits and challenges of having a brain injury. It is this second level of recovery that is
currently being underserved.
I am asking for your help in
educating and sharing with the medical profession that what is being experienced
by patients as “normal” is far below the best interests of the patient. Simple solutions such as appropriate patient
education regarding follow-up care of functional challenges, and monitoring of
that care by supervising doctors is lacking.
I understand my case is extreme, that it is not common practice for
surgeons to be found through the emergency room and that most patients are
referred by other professionals. What I continue
to see from the patient perspective is that the trend to disregard or ignore
functional healing is common for those doctors as well. I am privileged to associate with a variety
of patients from across the world, many of whom repeatedly express feelings of abandonment,
loss, and disillusionment from their initial providers. They stop seeking help or searching for
answers, leading to a decrease in quality of life and fear of follow-up care
and procedures.
My surgery and recovery are a
pivotal miracle in my life. Your role as my neurosurgeon remains one of my greatest
blessings, my healthcare team is another.
I believe without either of those two components I would not be looking
forward to a life of decent quality. I grieve
for patients who express that they avoid appointments because they fear being
ignored, dismissed, or hearing of another procedure. None of these options is ideal and all result in
decreased outcomes for brain tumor patients. The question remains, how do we solve this?
I believe that as patients and
providers work cooperatively and engage in open dialogue we can improve
outcomes for patients, increase functionality post-treatment, and help both
patient and provider engage fully in regaining optimum quality of life. I ask your help in educating providers on
providing follow-up supportive care, and creating a team based approach to
functional recovery. I am not sure of
the proper format for this type of conversation, in the social work field I would
advocate for presenting at local conferences and meetings of professionals. Maybe the answer, in this case, is to begin
one office at a time. I propose a
three-fold solution.
1. Patients
are provided reviewed and approved information regarding aftercare and recovery,
to be given at various points along the healing path such as 14 days, three
months, six months, and annually as needed.
Correct information helps answer questions that arise after appointments
are concluded and gives patients something tangible to hold on to.
2. Patients
are provided access to and information about recovery supports such as speech pathologists,
occupational therapists, audiologists, and physical therapists at their 14 day
follow-up appointment. It is very easy to compile information of local
providers and provide such information to patients to use as needed. Patients often do not know what questions to
ask or what is even possible; by offering the information providers demonstrate
patient concern.
3. At
the earliest opportunity, providers and patients must identify a contact
professional who will co-ordinate all care and ensure that the patient receives
timely responses for any medication and follow-up care concerns. This provider receives release of information for
all reports and appointments so as to ensure that the patient is maintaining a positive
healing trajectory. This works to allow specialty
providers to do what they do best and leaves general providers all the tools that
they require to adequately do their job, improving outcomes for both patients
and providers.
The changes I have outlined are
simple and easy to maintain, taking no more time for providers and helping
patients avoid medical burnout, improving outcomes for everyone. Thank you for your care, for my life, and for
taking care of people like me.
