[Mandy F.]

I recently accepted a third job which I already considered suspect based on the (lack of) interview because I'm that desperate for cash. It's a home health position and last night was my first night. While going through the books, I saw a note that said "low gluitin diet" (spelled that way!) and I asked the other staff about it. She didn't even know what gluten was, but had only been there for a couple of weeks... As I continued through the book, I realized that they have him on this to treat him for "severe psoriasis" so I assume someone (couldn't figure out who) thinks it's DH. I read every single document in that house that I could find and there was not one mention of the word gluten except for that little note on his doctor's orders and a doctor's visit sheet to get the diet approved!!! To top it off, he hadn't had a gluten free meal since the approval of the diet!!! I was so mad... and quite frankly due to this (and many many other things like missing documentation and a complete lack of competency from this agency altogether) I don't intend to keep this job for long.

I was even more appaled when I got him out of bed and he was showing me his feet and his head/neck which was covered in scaly, scabbed, red rash. He kept saying "Look!" and picking at it and scratching it. The evening staff had commented that they had him eat gluten-free foods for a couple of weeks "but he's only got a $40 allowence for gluten-free foods so after the 40 is gone, they stopped buying it." She said that while he was eating it, the rash got better... He'd probably have more money for the gluten-free sub foods if he weren't on 7 different meds for the "psoriasis" (not to metion the ones for his other unrelated conditions) and going to the derm every 3 months for follow up and new meds that are all being considered ineffective!!!!!!!!

At any rate, I was replaced by the "lead staff" this morning who said "Oh, He's only "low gluten" so he only has to have some gluten free stuff" . Clearly she doesn't get this at all, either. Not to mention (and no exaggeration at all here) the only gluten free foods in the house were a bag of gluten-free pasta, 6 eggs, a few grapes, a few pieces of cheese, and a half a bag of broccoli. There were also 6!! open loaves of bread!!! Several containers of various left over pasta dishes, 4 open boxes of cereal, 3 open bags of flour, and several packets of various types of gravy!

I wanted to explode on the so called "lead staff" who had no idea what gluten was either, but I think this is a complete agency failure and not just them. I would have exploded on the management except that it was my first day, my direct manager's daughter is in the hospital, and I have no idea who else to complain to. The nurse has supposedly been reviewing the house monthly and there was no note what-so-ever of his completely non-gluten free (or even freakin low!) diet mentioned.

Sorry for the vent and if you read all of this, thank you! I needed help because I know that there should be info out there about this that I could give to them, but working 86 hours this week, I just really don't have the time or energy to look it all up. Not to mention I think it would have to be simple enough for a toddler to understand to get the message across to these people. I was hoping that some of you would respond with some articles/info about DH and the fact that it's either gluten-free or not and there's no such thing as "low gluten" and eating at least 1 piece of bread with each meal certainly wouldn't be a qualifier for "low" if there were such a thing.

Alright... I've got 4 hours to sleep before I have to leave for job #1 (a real job with documentation and professionalism and stuff... ). Thanks in advance to anyone who waded through this!

[ravenwoodglass]

I know it is hard not to get angry but take this as an opportunity to educate. There is plenty of regular food like rice, veggies, meats and such so once they know how they shouldn't have a problem feeding him. There is so little education for folks in the health care fields about gluten avoidance that I think we kind of have to just take a deep breath and do our best to teach them. Here's a great place to start that they should respect.

http://www.celiac.ni...Dermatitis.aspx

This will link you specifically to DH page but if you hit on the Home button there will be more info still.

[CeliacMom2008]

Mandy, you may just be that poor man's angel from heaven! I'm so glad you were led to take that job. I know with 3 jobs it will be very hard, but just think what you can do for another human being! You could talk to your manager when she returns about what you know about Celiac and how critical his complete gluten free eating is. Then offer up to try to help plan meals. Heck, if you do it right you may find yourself a new career! I think you have an excellent opportunity here - not only to help this poor man, but also to help yourself in the process.

Good luck!!

[mushroom]

Hi Mandy: Thanks for taking the time to care about this poor man, seems like no one else is.

I would like to caution you that he probably does have psoriasis, as do I. It is another autoimmune condition, like my rheumatoid arthritis, most likely caused by his intolerance of gluten. His red scaly rash and extreme itching sounds like me, and I put myself on a gluten-free diet in the hopes of improving it and the arthritis, having come to the conclusion after all these years that gluten was at the heart of all my problems (no doctor ever did). I have creams, lotions, ointments, a whole basketful of them, for treating the psoriasis, none of which seem to do much except let me think I am "treating" it (well, maybe they do perhaps ameliorate the worst of the itching). Unfortunately, even a gluten-free diet has not helped the psoriasis and the arthritis, but continuing to eat it would be unthinkable for me. He should be on a NO gluten diet from my point of view, as you seem to realize.

Good luck with whatever action you decide to take.

Neroli

[whitball]

I would recommend that you contact someone who can help this person. Immediately!!!! A case worker, Adult services worker perhaps? My first concern is that this person is being abused by support staff. If this person is receiving home help services, my guess is the person is elderly or a person with a disability. There are many questions to ask. Is this person his own guardian? If there is a guardian, then in most states the person is considered a vulnerable adult. A phone call to the adult protective services is warranted. If you are a home help staff, in most states you are a mandated reporter. you must report this situation to someone of authority. Not the boss. It gives them time to cover their tracks. For example, If the person is a diabetic and was not getting insulin injections by support staff, then his health and safety is in jeopardy. it would be considered a recipient rights violation. If his diet is prescribed and is ignored by staff, the person is in dangerous hands. If you have further questions, please feel free to ask.

[Mandy F.]

Neroli: I have considered that he may well have psoriasis, also. I wasn't competely ruling it out in my mind but was angry at the lack of effort on their part to see what this means and to properly document why this may be beneficial to him in the first place. I have no idea where the idea came from to start the diet, but feel like they should be doing more than just sending him to the derm all the time rather than looking for things that could cause/contribute to his condition.

Whitball: I have considered all of the things that you said and am holding my call to the department of mental health for one primary reason... He may be on a waiting list to see a dietician, in which case the company can still claim ignorance because they don't know how to educate their employees. They are not required to go above and beyond to search for info themselves (ie: they would use best judgement when starting a diabetic diet until they see a dietician to get specific instructions.) The lack of documentation concerns me, but it is thus far passing the case manager's monthly reviews so I'm wondering if there is verbal info being shared between the house manager and the case manager that I just don't know about. If I find that he has seen a dietician and that they are not even trying, I will ABSOLUTELY be contacting someone above his current case manager to get an investigation started. Other than this particular issue, I see no signs of outright abuse or neglect just extremely poor management and communication. Other than his skin issues (which are being addressed by regular follow up appointments to the derm) he is in good health (seizures, weight, hygiene, routine medical exams, etc. all well controlled), appeared happy, and I did not see any obvious signs of rights violations.

The other thing I wonder about is the, for lack of better terms, "unprofessional" documentation and how this could be affecting things. (my primary reason for not wanting to work there) He is not his own guardian but still has the right to choose his food. We have this problem at the good place I work. If a diabetic client chooses to eat a dozen cookies, we have a responsibility to monitor them but cannot intervene unless they are clearly posing an iminent threat to their health or they have a documented plan of action for intervention. It could be that he is choosing his food and not being properly assisted in this area. Again, the documentation doesn't say anything but what he ate, not if he chose it, if he was encouraged to eat something else, etc. (which is how it would be documented at the reputable place I work).

At the very least, I would consider this agency sub-par. They are doing the absolute bare minimum documentation necessary to receive funding. The people working there seem ignorant (and could therefore be guilty of neglect) but they do not seem outright abusive. They seem concerned about his well-being (they did request this from the doc after all) but not enough to independently research what it means. I also have a feeling that personal pride comes before patient responsibility as I received a message saying "You need to call me about this little note you left me on the table." The "note" was a list of questions (including about whether he's seen a dietician for the diet yet) and a list of missing documentation I noticed while reviewing their books. The manager was made well aware that i was a house manager for 3 years at another agency and should have known that I would be looking for these things if she was a decent manager at all.

Did I mention that I applied 3 weeks ago, was told I would start the following week, and only went in yesterday because I called the woman and asked her if she was still planning to use me. She said "Oh, sorry, my daughter went in the hospital this weekend (appendix or gall bladder or something) and I forgot to call you. I've got you on the schedule for tonight and a few other days but the schedule's in the other room. You'll have to look at it when you get here..." Had I never called, I wouldn't have even gone in... It says a lot about the agency's ability to hire management, though. And it's the reason I left the last place (I stepped down and was replaced by a person with very similar qualities). I should have quit before I started just based on that conversation! But now I feel bad for this guy... I would try to get this woman fired, but I think she's the owner's neice or something and was promoted to this position after staff arguments caused the previous manager to leave.

It's all a big mess... part of me wishes I had never gotten involved... I knew it would be a poor working environment (between the manager and employees) when I started and it never makes for a productive living environment for the clients.

[whitball]

What a mess! I am glad that you are aware of the different options that you have. Sorry to get so worked up! I've seen alot of awful situations. I am a case manager and find that I have to constantly get on staff to give me information from dr. appointments, med reviews etc. I always preach about documentation and always read the communication logs. Makes staff real mad! I've had to show up to homes without calling first and have found staff sleeping, gone, even found a client locked out of their own home while a staff was napping. It's amazing what people can get away with and what clients have to go through to get the services that they deserve. good luck.

[mushroom]

Mandy F., on Feb 5 2009, 06:36 PM, said:

Neroli: I have considered that he may well have psoriasis, also. I wasn't competely ruling it out in my mind but was angry at the lack of effort on their part to see what this means and to properly document why this may be beneficial to him in the first place. I have no idea where the idea came from to start the diet, but feel like they should be doing more than just sending him to the derm all the time rather than looking for things that could cause/contribute to his condition.

My doctors (rheumatologist, dermatologist) do not see any relationship between my autoimmune diseases and what I eat. It seems like his doc at least may have had some clue--maybe he has GI symptoms also??

[Mandy F.]

Well, after not answering her phone the two times I tried to call her about this, the woman leaves me a voice mail saying "I don't think you're the right person for this position since you won't return my calls." So, since I had no answers regarding any of the questions/concerns I had raised, I promptly called DMH and spoke to a woman in Quality Control/Abuse and Neglect. I have serious concerns about an agency which would fire someone for asking questions rather than addressing them in a professional manner. The woman I spoke to seemed concerned and knew the clients' last names when I said their first names... She also said that her daughter had just recently been diagnosed with Celiac and knew that a gluten-free diet wasn't an easy thing to do, but certainly an important one. Without getting into any detail, she said that concerns had been raised in that home before. I personally think the biggest problem there is laziness and immaturity amongst the staff, especially that manager. The place I work for is really great and if I hadn't signed a confidentiallity clause (one of those "can't solicit private services from our clients for X long") thing, I would send a letter their guardians letting them know that there are better things out there for their sons.

I am a bit paranoid now that I called that this will somehow fall back on my head... When I called and was trying to figure out who to talk to, they thought I was a disgruntled employee and referred me to the EEOC. They did get me directed to the right person who seemed to understand my concerns, though. She said that someone would be contacting me about this.

Whitball: You're awsome! The ISL I worked for before would freak out if a case manager showed up unannounced at a house. Apparently it is against the rules... but really, they employed a woman who they knew spent most of her day asleep and weren't about to fire her. Not to mention the phone calls and not having time to "prepare documentation". As a house manager for that agency, I loved it when my case manager showed up unannounced. I had a lot of problems with staff that were only resolved when the case manager stopped by and caught them. And that was at a decent agency . I only had a problem with one case manager and it was because he would call on his way and say "Is this a good time?" Invariably, he would be on his way as my client was getting ready to leave for work and would show up anyway. Then he would get annoyed with my client who refused to speak to him because he was now running late for work. . We squashed that pretty quick with complaints to his boss... I mean really... a case manager disrespecting a client like that...

Sometimes, I really just want to start my own company, do random pop-ins and fire people on the spot for things like sleeping and hour long phone calls...

[CeliacMom2008]

Mandy F., on Feb 6 2009, 09:15 AM, said:

Sometimes, I really just want to start my own company, do random pop-ins and fire people on the spot for things like sleeping and hour long phone calls...

Maybe you should! I started my own business 13 years ago. It was scary and the pay (or should I say lack there of) in the beginning really stunk, but now we have a successful business with 25 employees. It's definitely not all sunshine and roses and being self employed is assuredly harder than working for someone else, but there is a huge sense of satisfaction in saying "Yeah, I did that!"

[whitball]

You should really consider starting your own business. Sounds like you are already a super advocate and that is what is missing in alot of homes out there. The people that we work with deserve good service and the bottom line is they are the ones that pay our wages! Sometimes I can't believe some of the things that I hear and see being done to people. As far as contacting adult protective services, you did the right thing. The agency should not be able to release your name to anyone. Another option that I have used is to contact the licensing body of the home. It works and we have had home investigated.

[Silliest of Yaks]

I work at a children's residential treatment facility (it's kind of a hybrid between a psychiatric home and a modern-day orphanage) and experienced a similar frustration with one of the kids there. Granted, I don't work directly with the kids, I'm on the admin side these days. I just happened to be talking with our on-site nurse about my own diagnosis and diet change, when she said one of the kids was going to go on a gluten-free trial diet due to IBS symptoms.

I know odds are this kid is not a Celiac. But a one week trial, especially without extensive staff education (there are a lot of individuals handing off, and most of them are behavior specialists, but don't know jack about gluten or celiac disease), isn't going to tell them anything. I mean most of the kids are on psychiatric medication, and a few have to take saltines with their medication because it is supposed to be taken with food. I'm not even sure we have the communication in place to stop the kid from getting saltines if he's in that group. I think it's exceptionally likely that the kid will never have a true gluten-free trial, and it seems silly not to do the blood test if there is reason to believe gluten is a problem in his diet. Also, since one of the big signals in celiac kids is moodiness and behavior problems, and EVERYONE at this facility has them, I wonder whether his psychological symptoms are getting masked with other mental health diagnoses.

But, I don't know the whole story, and I am just the receptionist (which, by the way, I became upon my return from disability because I was looking for something low-stress. I actually have some mental health credentials to out-rank a lot of the staff, but since I came from a different program, they don't know it). I voiced to the nurse how life-changing my diagnosis was, and how my first attempts at going gluten-free weren't that promising and wouldn't have been enough for me to realize I had celiac disease, and the nurse listened patiently, but in such a way that I could tell she wasn't taking my word for much. She's pretty old-school.

It is so hard to want to give people a voice and not have the authority to do so. If I did raise a stink at work, odds still are against this kid being a celiac. I do have a tendency to suspect celiac disease wherever it can possibly be, and part of it probably is more a matter of projecting my frustrations at being undiagnosed upon the situations of others. In mental health, they call this countertransference, and I think any advocacy on my part would be interpreted as such. I just hate the idea of letting someone miss a diagnosis. It's enough for me to want to re-shape my career path to something where I could help more people get screened. Especially in low-income families who get a lot of their medical care in the emergency room, I see the opportunity for a life-saving diagnosis, and the appropriate follow-up patient education, getting missed.

I want to do more. Just wish I knew how.

[JNBunnie1]

Silliest of Yaks, on Feb 7 2009, 02:57 PM, said:

I work at a children's residential treatment facility (it's kind of a hybrid between a psychiatric home and a modern-day orphanage) and experienced a similar frustration with one of the kids there. Granted, I don't work directly with the kids, I'm on the admin side these days. I just happened to be talking with our on-site nurse about my own diagnosis and diet change, when she said one of the kids was going to go on a gluten-free trial diet due to IBS symptoms.

I know odds are this kid is not a Celiac. But a one week trial, especially without extensive staff education (there are a lot of individuals handing off, and most of them are behavior specialists, but don't know jack about gluten or celiac disease), isn't going to tell them anything. I mean most of the kids are on psychiatric medication, and a few have to take saltines with their medication because it is supposed to be taken with food. I'm not even sure we have the communication in place to stop the kid from getting saltines if he's in that group. I think it's exceptionally likely that the kid will never have a true gluten-free trial, and it seems silly not to do the blood test if there is reason to believe gluten is a problem in his diet. Also, since one of the big signals in celiac kids is moodiness and behavior problems, and EVERYONE at this facility has them, I wonder whether his psychological symptoms are getting masked with other mental health diagnoses.

But, I don't know the whole story, and I am just the receptionist (which, by the way, I became upon my return from disability because I was looking for something low-stress. I actually have some mental health credentials to out-rank a lot of the staff, but since I came from a different program, they don't know it). I voiced to the nurse how life-changing my diagnosis was, and how my first attempts at going gluten-free weren't that promising and wouldn't have been enough for me to realize I had celiac disease, and the nurse listened patiently, but in such a way that I could tell she wasn't taking my word for much. She's pretty old-school.

It is so hard to want to give people a voice and not have the authority to do so. If I did raise a stink at work, odds still are against this kid being a celiac. I do have a tendency to suspect celiac disease wherever it can possibly be, and part of it probably is more a matter of projecting my frustrations at being undiagnosed upon the situations of others. In mental health, they call this countertransference, and I think any advocacy on my part would be interpreted as such. I just hate the idea of letting someone miss a diagnosis. It's enough for me to want to re-shape my career path to something where I could help more people get screened. Especially in low-income families who get a lot of their medical care in the emergency room, I see the opportunity for a life-saving diagnosis, and the appropriate follow-up patient education, getting missed.

I want to do more. Just wish I knew how.

I wanted to say, O silliest of Yaks, if 1 in 133 people have this disease, why is this boy so unlikely to have it, especially given that mental illness is one of the major symptoms? I don't think you're doing that transfer-thing you were talking about, you're just intelligent and also better informed than everyone else. I would print relevant info and hand it over to his ranking health care guardian!


Mandy, I think you wanting to help this man is a wonderful thing! Good for you.

[whitball]

Ditto with JNBunnie1, Silliest of Yaks. It's a good idea to give information to the main person involved with the person's care. Your experience is valid and your information is valuable. I run into this situation sometimes especially with clients with Down Syndrome who have ongoing D, allopecia (I know this is not spelled correctly, but you get the idea) and skin issues. I have tried to get a psychiatrist to test for Celiac, but just wouldn't listen. But, that said, we still need to try to get the word out. Good luck.

[Fiddle-Faddle]

Silliest of Yaks, on Feb 7 2009, 02:57 PM, said:

I do have a tendency to suspect celiac disease wherever it can possibly be, and part of it probably is more a matter of projecting my frustrations at being undiagnosed upon the situations of others. In mental health, they call this countertransference, and I think any advocacy on my part would be interpreted as such.

In Real Life, we call this, "using the wisdom of experience to help others." One doesn't need an MD or RN to be able to do this, and often, experience is a better teacher than a paragraph in a textbook.

Countertransference, my Aunt Fanny!

Heck--mental health, my Aunt Fanny!!!!!