Getting GF food during hospital stays

[Zizzle]

This is a post from the DC Celiacs listserve. Several families have complained that they can't get reliable GF meals at hospitals, even for the admitted patient. This family had a celiac child admitted to our major children's hospital - their special celiac program, and there was no GF available. The surely embarrassed GI made quick work of solving the problem. Hopefully other hospitals are taking note.

Some of you may remember that my daughter and I had a negative experience in May at Children's National Medical Center, where we encountered difficulty getting gluten-free food while she was a patient there. I emailed the chief of gastroenterology (who I believe also heads the Celiac program at CNMC), and he was very distressed to learn of our experience and promised that the situation would be addressed. Subsequently, I was contacted for further information and today I received a certified letter detailing their investigation and measures they are taking to address each issue that I raised.


Their thorough commitment to resolve these issues, improve their service, and the steps they took to do so is quite impressive.

Here is a summary of changes they have made or plan to make as a result:

Need for further education and training identified: The department of Food & Nutrition Services, in consultation with the Division of Gastroenterology, has identified that there is a need for further education and training of both the food service and nursing staffs regarding appropriate foods, cross contamination, and food service safety. They are currently working on this education program and the food delivery service at all levels, using members of the Children's National Celiac Program as primary consultants. They are aware that they need to get the right food to the right patient every time, and are committed to patient safety

New measures for Celiac patients admitted to the hospital have been taken in response to my concerns and their findings:
They have established a system by which a Clinical Dietician will work with the Patient Services staff to ensure that ONLY gluten-free food is provided to celiac patients. This will involve working with the patient and family daily to choose appropriate foods and then constructing the meals carefully in a gluten-free manner prior to delivery to the patient.

Meals will be checked for accuracy and appropriateness by a member of the management staff that has been trained by a qualified Registered Dietician.
These meals will be clearly labeled to avoid the uncertainty and confusion that we encountered.

They will institute education programs for the food service staff about gluten-free food and issues related to cross-contamination of foods.
They will develop new signage for the food carts, which will identify gluten-free items.
They will create a "hotline" phone number for volunteers to provide support and counseling for families with Celiac disease who are admitted to the hospital.

Changes in the retail areas, including the cafeteria,are being made. They have committed to:
Developing signage to identify gluten-free products in these areas.
Expanding the selection of packaged gluten-free products available in the retail areas.
Addressing larger system issues such as how to approach gluten-free diets in non-inpatient areas
Providing a list of area restaurants that provide gluten-free foods, which will be available from the Clinical Dietician, Celiac Program, or Patient Services Staff.


Kudos to CNMC for their outstanding customer service and responsiveness! I have never received such a thorough, well-thought out response from any business in response to concerns I have raised.

[tex]

All this just goes to show that for all this time, the medical community has pretty much ignored food sensitivity issues. The food service issues are a reflection of their general attitude toward food sensitivities. Obviously, even though they've been aware of it for hundreds of years, they even considered celiac disease to be rare. It seems incredible that it should take them so long to become aware of this problem, and they still have to be nagged into changing their policies, rather than taking the initiative on their own.

I have to say that when I had abdominal surgery, (about 6 years ago), the hospital food service had no provisions for any food sensitivities, but they were able to accommodate my needs, by sending their dietitian to my room to discuss what they could provide for me. When I had similar surgery, a year and a half ago, they still had to send the dietitian around, to figure out what they could provide, but at least they were aware of the problem, (even though there really weren't very many more additional choices).

The sad thing is, most GF offerings are salads, fruits, and juices, and dairy products, so people with multiple sensitivities are still very limited in their choices. Fortunately, they had plain roasted chicken, and fish. Even eggs were off limits, though, since they were only available as a powdered mix, containing gluten, (from which they prepared scrambled eggs for "normal" people). Apparently, a breakfast of plain old eggs and bacon is illegal, in hospitals, (because of the dangerous cholesterol risk, doncha know).

The worst thing I noticed was an oversight on the condiments that are always sent along with meals. Those little packages of artificial sweeteners, (sugar is apparently another illegal substance in a hospital), and other seasonings, almost always contained gluten, dairy, soy, etc., and the list of ingredients was incredibly long, so that the print was so small that it was extremely difficult to read. That may seem like a minor item to them, but if a patient fails to read the labels, they will definitely be in trouble, even though the meal itself was probably fine.

They're making some progress, but it seems mighty slow. Thanks for the article.

Tex

[jmayk8]

When I had my colonoscopy in January and 'came to' the nurse asked if I wanted some crackers and ginger ale. I declined and told her no crackers for me bc I am celiac and she said she had gf crackers! She told me that she bought them herself and keeps them at her desk bc she has so many patients say the same thing.

[tex]

She told me that she bought them herself and keeps them at her desk bc she has so many patients say the same thing.

Wow! Kudos to that nurse! She obviously cares for her patients.

Tex

[Joefnh]

You know I was pleasantly surprised at the hospital food during my most recent 'vacation'. A menu coordinator comes around to each new patient and talks about all intolerances, religious food issues and personal preferences. They had no issues with a GF, DF and SF meal. Surprisingly it was pretty darn good for being not much more than baby food. At least some of the facilities are getting the message.

Another interesting aspect of this hospital is that the premise it runs under is kind of like a hotel, all rooms are private and food service is on call 24 hours a day. They coordinate the standard 3 meals but you can call at anytime to get another meal or snack as desired. All of the tvs were a 40 inch flatscreen with online streaming movie service. While I don't recommend that type of 'vacation' I can say this facility seemed to actually give a darn.

Joe

[tex]

Man - that's good service. They're way ahead of the hospitals around here.

Tex

[sarkin]

Wow, Joe - sounds like you had really cutting-edge care, in more than one sense of the words (sorry!). That is amazing, and you absolutely deserve it. I can't tell you how many people I've known who've been fed primarily by friends/family while in hospital, not because of food sensitivities, but because they foolishly had an essential medical procedure, or a baby, during the times when meals were served ;) They would have gone hungry otherwise! (And this is why my friend/neighbor claims she will resist assisted living when her time comes, and check into a high-class hotel till her money runs out, lol.)

Great article, Z - and Tex, so funny that real food in the hospital is looked on as the enemy - and the last thing they would consider serving. I've brought a lot of real meals to friends and family in hospital or rehab, and it's almost always looked on as a potential nuisance or health crisis.

Again, Joe, I'm so glad you found yourself in the absolutely right place, and I hope you never check in there again.

Health to all,

Sara

[MaggieRedwings]

Wow Joe - they are definitely ahead of the hospitals where I live too. My last hospital stay the only thing they could figure out to give me since I was still a vegan then was potatoes at every meal.

Love, Maggie

[Zizzle]

Even more progress. Here's a follow-up from the first post. Let's hope other hospitals follow suit.

It gets better! Before I even had time to send him a thank you note, Dr. John Synder from Children's (Chief, Division of Gastroenterology, Hepatology and Nutrition) checked in with me to get my feedback and see if I had any other concerns. I told him how happy we were with their response, and how impressed the celiac community is with how they’ve handled the whole issue. I also mentioned one more issue that I had forgotten to bring up previously - gluten in medications. (Note: we were allowed to use our medications from home during our recent stay at Children’s). Not surprisingly, they have already been working on this, and I received an update yesterday from the person responsible for this. She gave me permission to share her response, which is below:


Good morning Mrs. [ ],

My name is Lennie Clore, and I am the program coordinator for the Celiac Disease Program at Children’s National Medical Center .

I received a message from Dr. Snyder with some questions you had regarding how we address the issue of gluten in medications here in the hospital.

As Dr. Snyder mentioned, I have been working on this issue with one of the inpatient pharmacists. When a child with celiac disease is admitted to the hospital, “gluten” can be entered into the computer system as an allergy, thereby triggering all staff, including pharmacists, to take pause before ordering/administering any medication or food. That being said, we are working with the staff to ensure that they are aware that gluten can be entered as an allergen in this way, as this may not be widespread knowledge yet.

Once a medication is ordered in the computer, the pharmacist will be able to check for gluten content. The pharmacists know to call manufacturers with questions, and during off hours (i.e. if a patient is admitted overnight or on a weekend), they use www.glutenfreedrugs.com as a reference tool. And of course, if a parent prefers, we always allow home medications to be given once they have been checked by the pharmacy. IV medications will not contain gluten, so in an emergent situation when medications must be given quickly, they are usually in IV form, so there should not be an issue. I have also checked into the solutions/suspensions that the pharmacy uses to compound liquid medications, and they are also gluten-free.

This is an ongoing project, but our goal is for there to be complete understanding of the risk of gluten ingestion via medications, just as there is with food. Please let me know if you have any additional questions, concerns or feedback as to how we might improve our system!

Thanks so much,
Lennie Clore

****************************************************
Ellen (Lennie) Clore, MSN, RN, CPNP
Pediatric Nurse Practitioner
Program Coordinator, Celiac Disease Program
Division of Gastroenterology, Hepatology and Nutrition