Updated 3 29 2018
As readers here know, a member of my family has been struggling with anorexia nervosa/bulimia nervosa combined with severe depression and anxiety since her teens.
A year ago she spent five weeks in a local medical hospital while her providers earnestly attempted to find a bed for her in a Level 1 (as it is called here in Arizona) psychiatric hospital as well as to a well-known eating disorder facility to no avail given the complex nature and longevity of her diagnosis.
During her stay, as a layperson although I have worked hard to be well informed (citizen advocate) on the subject, I met with push back and a certain level of patronization when I would inquire about lab results, her weight, and behaviors as well as offer suggestions. As a result, I often sought, as her Court appointed legal guardian, to obtain the ongoing medical records in order to learn clinically what was going on. Much of what I asked about I know is important information for those who practice in the field.
So, I was quite delighted to learn that the Journal of Eating Disorders has just provided Open Access to an article just published this year titled "Outcomes of an inpatient medical nutritional rehabilitation protocol in children and adolescents [up to age 23] with eating disorders". Peebles et al. Journal of Eating Disorders (2017) 5:7 You can access the full article here:
In 2015, the Journal of Eating Disorders provided an important commentary on SE-AN titled "Severe and Enduring Anorexia Nervosa: in search of a new paradigm", an editorial comment written by Stephen Touyz and Phillipa Hay found here : [Touyz and Hay (2015) 3:26] My take-away from the article was that providers need to focus on a 'recovery model,' the goal of which is to "....draw upon the patient's strengths and competencies rather than merely paying attention to what is 'wrong' with them." The authors propose that "....Most patients with SE-AN are unlikely to fully recover. Some do but they are in the minority. It is therefore extremely important not to focus solely upon symptom reduction, but also to take into account a more holistic model of care....to take cognisance of the person as a whole by improving not only quality of life, but overall general functioning, employment and access to suitable housing as well." I was hopeful, as I read their commentary, that additional research would be done and articles published to assist providers. And so, apparently this is happening as the reader can find in the Peebles et al article above as well as the following that I've quickly put together here.
One may be of interest to therapists - Predictors of Therapeutic alliance in two treatments for adults with severe and enduring anorexia nervosa found here. [Stiles-Shields et al. Journal of Eating Disorders (2016) 4:13]
Another is titled "Listening in the Dark:why we need stories of people living with severe and enduring anorexia nervosa" and can be found here. [Conti et al. Journal of Eating Disorders 92016) 4:33]
I believe, as a family member, it's very important to hold on to hope. I also am observing that a person with a severe and enduring eating disorder displays a tremendous amount of courage to keep going rather than to throw in the towel. I think we as a society have a responsibility to stand by that person.
Information is provided about eating disorders, particularly of adults, to parents and other loved ones written by a parent who is in recovery from an eating disorder.
Welcome
When I created this blog, I was "getting on" in my early sixties, hence the blog name. However, my adult daughter's eating disorder and co-occurring emotional dysregulation disorder and other co-morbidities - ongoing for about 33 years - became and was our focus as we attempted to help her get into recovery. By learning about, reflecting on, reading about, attending conferences and writing about eating and brain disorders, I created a place to blog what I've learned. I hope this blog will be of use to others, especially families of and adult sufferers themselves to help them get into recovery. I update posts from time and the update date will be present at the top of the post.
Sadly, my daughter passed away in early October 2021 mainly because her body became so malnourished that she was immunocompromised, contracted a severe infection that was not properly addressed during an earlier hospital stay the month before, and developed an overwhelming non-covid pneumonia following surgery to save her life. I believe she should have been able to receive palliative care but Arizona, our country, and even the professionals trained in the treatment of eating disorders, particularly anorexia, are not "there" yet. I address the issue of palliative care in a recent post below, initially written in November 2021. I am not a certified eating disorder specialist. I am an Expert by Experience and college-educated with a BA in Community Work with an additional certificate in a one-year program in Business Administration from the same institution.
I am passionate about all of this because, as Shakespeare wrote in The Taming of the Shrew, Act 4, Scene 3: "My tongue will tell the anger [and sadness] of my heart or else my heart, concealing it, will break. And, rather than it shall, I will be free even to the uttermost, as I please in words."[2016]
Travel Guide
If you're new to my blog, I recommend you begin on the right side and take a look at the "Of Note" offerings. Read Dr. Cynthia Bulik's recent published interview (5/4/22) "Rethinking Eating Disorders" if you want to print an easy-to-understand professional's expert opinion about anorexia for your family doctor or the therapist. [Early intervention is absolutely critical. For those whose eating disorder is categorized as entrenched or severe and enduring, read the editorial comment by Stephen Touyz and Philipa Hay for a new approach about treatment. It is possible for your loved one to recover! I have also attached a link here for additional papers on the subject of severe and entrenched eating disorders. If you are a family member or friend of an adult with an eating disorder and have been at this for awhile, I refer you to the posts within the title "Adult Eating Disorders and Recovery Tools" found in the Index on the right hand side of this site. As well, in the "Of Note" section take a look at those posts with an asterisk. If you're a parent and need support, look for posts in the Index about parent support or parent toolbox.
In my opinion, the best book to buy, to refer to constantly and to share with members of the medical/psychiatric profession is "Sick Enough: A Guide to the Medical Complications of Eating Disorders" by Jennifer L. Gaudiani MD, CEDS, FAED. "Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture."
I recommend two groups who will support you on your journey - F.E.A.S.T and the National Alliance for Eating Disorders. Both maintain websites and Facebook private groups.
Thursday, March 30, 2017
Friday, February 24, 2017
2016 - The Year that Congress Passed and President Obama Signed Eating Disorders Legislation
On December 13, 2016, President Barack Obama signed H.R. 34, the 21st Century Cures Act, into Law. This historic bipartisan legislation included included key provisions from the Anna Westin Act (S. 1865/H.R. 2515) including clarification of existing mental health parity law to improve health insurance coverage for eating disorders and life-saving residential treatment, early identification of eating disorders training for health professionals, and enhanced information and resources to help early identification of eating disorders by the public.
This legislation passed the House of Representatives with a 392-26 vote and then passed the Senate by 94-5. I believe all Arizona's senators and representatives voted in favor. Amazingly wonderful!
A one-page summary of the Anna Westin Act can be found here accompanied by a personal account of my trip to Washington, DC to lobby for this legislation, also here. Amazingly, the Anna Westin Act received the bipartisan support of 101 Senators and Congressmen (36 Republicans and 65 Democrats) including, from Arizona, Rep. Kyrsten Sinema and Rep. Ann Kirkpatrick who signed on as co-sponsors of the bill.
A very special thank you to them and to Senator Amy Klobuchar [D-MN] and Congressman Ted Deutch (D-FL] who introduced the legislation in 2015 along with their colleagues Senator Kelly Ayotte [R-NH], Congresswoman Ileana Ros-Lehtinen (R-FL], Senator Tammy Baldwin [D-WI] and Senator Shelley Moore Capito [R-WV].
[Blog note: I spent most of 2016 advocating for my family member while she spent more than 180 days in hospitals and ER's as we attempted to keep her alive through legal means as well as imploring her mental health care provider and an insurance company to help her. This periodic hospitalization continues. We are grateful for the care including the important involvement of a special team and the coverage for that care that she has received, for without it, I truly do not think she would be alive today.
As you will learn here, our State Legislature has done nothing to provide Medicaid Coverage specifically for eating disorders because the one piece of legislation that could have started Arizona on the road to providing coverage died in a subcommittee.
I am so very thankful that the 21st Century Cures and Mental Health Reform Act incorporating the Anna Westin Act became law and to the many people who made it happen, starting with Kitty Westin whose telephone number was given to me years ago by a nurse here in an ER. Kitty, the mother of Anna Westin who died more than 16 years ago and after whom the eating disorder legislation is named, picked up the phone at her home and talked with me perhaps for a half hour giving me encouragement to keep going in spite of enormous odds.
Perhaps something now can happen in Arizona so people with an eating disorder diagnosis will get the life-saving treatment they need and early so they will not go through what my family member and we have endured for so many years.
Again, those with what is known as Severe and Enduring Eating Disorders (SE-AN) deserve a chance and opportunity to get into recovery. I recommend reading this piece found in the "Of Note" section by Stephen Touyz and Philipa Hay, published in the Journal of Eating Disorders (2015) 3:26.]
This legislation passed the House of Representatives with a 392-26 vote and then passed the Senate by 94-5. I believe all Arizona's senators and representatives voted in favor. Amazingly wonderful!
A one-page summary of the Anna Westin Act can be found here accompanied by a personal account of my trip to Washington, DC to lobby for this legislation, also here. Amazingly, the Anna Westin Act received the bipartisan support of 101 Senators and Congressmen (36 Republicans and 65 Democrats) including, from Arizona, Rep. Kyrsten Sinema and Rep. Ann Kirkpatrick who signed on as co-sponsors of the bill.
A very special thank you to them and to Senator Amy Klobuchar [D-MN] and Congressman Ted Deutch (D-FL] who introduced the legislation in 2015 along with their colleagues Senator Kelly Ayotte [R-NH], Congresswoman Ileana Ros-Lehtinen (R-FL], Senator Tammy Baldwin [D-WI] and Senator Shelley Moore Capito [R-WV].
[Blog note: I spent most of 2016 advocating for my family member while she spent more than 180 days in hospitals and ER's as we attempted to keep her alive through legal means as well as imploring her mental health care provider and an insurance company to help her. This periodic hospitalization continues. We are grateful for the care including the important involvement of a special team and the coverage for that care that she has received, for without it, I truly do not think she would be alive today.
As you will learn here, our State Legislature has done nothing to provide Medicaid Coverage specifically for eating disorders because the one piece of legislation that could have started Arizona on the road to providing coverage died in a subcommittee.
I am so very thankful that the 21st Century Cures and Mental Health Reform Act incorporating the Anna Westin Act became law and to the many people who made it happen, starting with Kitty Westin whose telephone number was given to me years ago by a nurse here in an ER. Kitty, the mother of Anna Westin who died more than 16 years ago and after whom the eating disorder legislation is named, picked up the phone at her home and talked with me perhaps for a half hour giving me encouragement to keep going in spite of enormous odds.
Perhaps something now can happen in Arizona so people with an eating disorder diagnosis will get the life-saving treatment they need and early so they will not go through what my family member and we have endured for so many years.
Again, those with what is known as Severe and Enduring Eating Disorders (SE-AN) deserve a chance and opportunity to get into recovery. I recommend reading this piece found in the "Of Note" section by Stephen Touyz and Philipa Hay, published in the Journal of Eating Disorders (2015) 3:26.]
Tuesday, June 21, 2016
Policy Statement of Support by the American Medical Association (AMA) re Eating Disorders and Treatment - Parity
Bravo to the American Medical Association for this announcement! This adopted policy augments the work of President Obama's Task Force as well as of those working for adoption by Congress of the Mental Health Reform Act of 2016. More information about the Task Force and the MH Reform Act here in my blog.
June 15, 2016
AMA Urges Equal Health Care Access for Eating Disorders
For immediate release:
June 15, 2016
June 15, 2016
CHICAGO – The American Medical Association (AMA) adopted new policy today urging equal health care access and payment for eating disorders. Although current federal law mandates parity in benefit levels for eating disorders, many payers do not offer parity of services, effectively excluding eating disorders from mental health parity.
"Eating disorders have the highest mortality rate of any mental illness, but too often a patient's care is determined by their insurance company instead of their health needs," said former AMA Board Chair Barbara L. McAneny, M.D. "With only one in 10 patients with an eating disorder receiving treatment and with psychological intervention widely accepted as a critical component of care, ensuring mental health parity in benefits will save lives."
The policy builds on existing AMA policy related to eating disorders, mental health parity and body image. The AMA already encourages payment for physical and behavioral health care services on the same day and for Medicaid to pay for those services in school settings. Additionally, the AMA supports increased funding for research on diagnosis, prevention and treatment of eating disorders, including research on the effectiveness of school-based primary prevention programs for pre-adolescent children and their parents.
###
Sunday, May 1, 2016
Global Assessment of Functioning (GAF) Scale - A Scale You Should Know About
During a recent hospitalization, the usual assessment was made of my loved one's progress. The report included the "multiaxial" system for assessment found in the Diagnostic and Statistical Manual of Mental Disorders. The latest version is the DSM-V - the current edition published in 2013. Interestingly, the multiaxial system was dropped from the DSM-V. Here is a link to the history and discussion about the DSM-V and the multiaxial system.
As part of this update to DSM-V, a new scale was developed called the World Health Organization Disability Assessment Schedule 2.0. Here is a link to this scale. It's not clear to me that this new scale gets at what is on a person's mind although the questions do investigate a person's ability to function.
Since the multiaxial system is still in use here and probably elsewhere, I thought it a good idea to post about it. For those not in the profession or not familiar with the multiaxial system, this system was designed to provide what is considered by the psychiatric profession to be a comprehensive diagnosis or picture of the entire scope of factors that account, it is believed, for a patient's mental health.
Next, I list the categories I found on the report with a simple description of each of the five. Note that these are examples only:
Axis 1 - the clinical disorders and mental illnesses including, e.g., bipolar disorder, generalized anxiety disorder, severe depression, schizophrenia, substance abuse disorders, and eating disorders such as anorexia
Axis 2 - long standing personality and developmental disorders, e.g. what is known as borderline personality disorder
Axis 3 - general medical conditions, acute medical conditions and physical disorders e.g. osteoporosis, cardiac arrhythmias, acute weight loss
Axis 4 - psychosocial and environmental factors believed to be contributing to the patient's mental health, e.g. death of a loved one or family member, acute trauma, serious illness of family member
Axis 5 - the Global Assessment of Functioning (GAF) Scale
Perhaps because Axis 5 had never been included in previous reports provided to me or the Axis category had never included any information, I'd never known about Axis 5 or what is called the GAF Scale. The scale provides a hypothetical continuum of mental health-illness looking at psychological, social and occupational functioning, ranging from 100 (superior) to less than 10 (persistent danger of severely hurting self or others; inability to maintain minimal personal hygiene; or serious suicidal act with clear expectation of death). The assessment is usually made by at least one and hopefully two or more psychiatrists. Here in Arizona, what is known as the Title 36 process involves the independent assessment of a person by two psychiatrists.
Here is a link to a comprehensive GAF Scale.
A score of anything at 50-41 points to serious symptoms (e.g. suicidal ideation, severe obsessional rituals, frequent shoplifting) or any serious impairment in social occupational, or school functioning (e.g. no friends, unable to keep a job). As one descends to, say, 10 the person is in persistent danger of severely hurting self or commits a serious suicidal act with clear expectation of death. As one climbs the scale above 50, one encounters moderate to mild to minimal symptoms and tops out at superior functioning.
The number I found on the report represented, I was told, where my loved one stood and it shocked me. Shocked me because if her providers and insurers knew of this score, they knew she was more than seriously mentally ill. Suicidal ideation comes into the picture at 50. After learning about the scale and what the number meant, I felt I was armed with even more valid information to insist on hospitalization for an extended period of time. My family member just completed 7 weeks of inpatient hospitalization and has been moved, in spite of a continuing low number on the GAF Scale, to a step-down in spite of our and another professional's objections.
Yet, for the first time, we and the team were able to obtain inpatient hospital treatment until our loved one's weight reached a BMI of 19.4. The goal was higher than that but how grateful we were that the hospital staff worked hard to help see this achievement - a miracle and hopefully a precedent for others in the State of Arizona where a bill to to study the impact of required treatment for eating disorders for those with the low/no income insurance known as AHCCCS was snuffed out in committee.
I decided to write about this scale here because it seems to me that this scale and the score given to a loved one with multiple diagnoses might help a family obtain inpatient or residential treatment paid for by health insurance. At the very least, the score might help a family get their loved one into a safe place for more than a short period of time.
As part of this update to DSM-V, a new scale was developed called the World Health Organization Disability Assessment Schedule 2.0. Here is a link to this scale. It's not clear to me that this new scale gets at what is on a person's mind although the questions do investigate a person's ability to function.
Since the multiaxial system is still in use here and probably elsewhere, I thought it a good idea to post about it. For those not in the profession or not familiar with the multiaxial system, this system was designed to provide what is considered by the psychiatric profession to be a comprehensive diagnosis or picture of the entire scope of factors that account, it is believed, for a patient's mental health.
Next, I list the categories I found on the report with a simple description of each of the five. Note that these are examples only:
Axis 1 - the clinical disorders and mental illnesses including, e.g., bipolar disorder, generalized anxiety disorder, severe depression, schizophrenia, substance abuse disorders, and eating disorders such as anorexia
Axis 2 - long standing personality and developmental disorders, e.g. what is known as borderline personality disorder
Axis 3 - general medical conditions, acute medical conditions and physical disorders e.g. osteoporosis, cardiac arrhythmias, acute weight loss
Axis 4 - psychosocial and environmental factors believed to be contributing to the patient's mental health, e.g. death of a loved one or family member, acute trauma, serious illness of family member
Axis 5 - the Global Assessment of Functioning (GAF) Scale
Perhaps because Axis 5 had never been included in previous reports provided to me or the Axis category had never included any information, I'd never known about Axis 5 or what is called the GAF Scale. The scale provides a hypothetical continuum of mental health-illness looking at psychological, social and occupational functioning, ranging from 100 (superior) to less than 10 (persistent danger of severely hurting self or others; inability to maintain minimal personal hygiene; or serious suicidal act with clear expectation of death). The assessment is usually made by at least one and hopefully two or more psychiatrists. Here in Arizona, what is known as the Title 36 process involves the independent assessment of a person by two psychiatrists.
Here is a link to a comprehensive GAF Scale.
A score of anything at 50-41 points to serious symptoms (e.g. suicidal ideation, severe obsessional rituals, frequent shoplifting) or any serious impairment in social occupational, or school functioning (e.g. no friends, unable to keep a job). As one descends to, say, 10 the person is in persistent danger of severely hurting self or commits a serious suicidal act with clear expectation of death. As one climbs the scale above 50, one encounters moderate to mild to minimal symptoms and tops out at superior functioning.
The number I found on the report represented, I was told, where my loved one stood and it shocked me. Shocked me because if her providers and insurers knew of this score, they knew she was more than seriously mentally ill. Suicidal ideation comes into the picture at 50. After learning about the scale and what the number meant, I felt I was armed with even more valid information to insist on hospitalization for an extended period of time. My family member just completed 7 weeks of inpatient hospitalization and has been moved, in spite of a continuing low number on the GAF Scale, to a step-down in spite of our and another professional's objections.
Yet, for the first time, we and the team were able to obtain inpatient hospital treatment until our loved one's weight reached a BMI of 19.4. The goal was higher than that but how grateful we were that the hospital staff worked hard to help see this achievement - a miracle and hopefully a precedent for others in the State of Arizona where a bill to to study the impact of required treatment for eating disorders for those with the low/no income insurance known as AHCCCS was snuffed out in committee.
I decided to write about this scale here because it seems to me that this scale and the score given to a loved one with multiple diagnoses might help a family obtain inpatient or residential treatment paid for by health insurance. At the very least, the score might help a family get their loved one into a safe place for more than a short period of time.
Subscribe to:
Posts (Atom)