What is LITRE
This committee is a multi-professional group led by patients. It is a standing committee of the British Association of Parenteral and Enteral Nutrition (BAPEN).
Click here to visit LITRE's home page
Litre PN Pump Assessment
Litre Assessment of Ambulatory Pumps for Parenteral Nutrition - New 2007 Update
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LITRE's Mission
- LITRE - is a multi-disciplinary group that aims to improve the quality of life for patients on nutritional support at home.
- Investing and responding to the needs and concerns raised by patients carers and health care professionals with regard to equipment and services.
- Forging links between patients and industry
- Acting as a forum for users to help in product and service development and market research.
Frequently Asked Questions
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I have recently been started on home enteral feeding, but I am still having lots of pain and vomiting when I feed, and my consultant has mentioned that I might need TPN. I have heard of TPN, but I don't really know what it means. Please can you explain? |
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TPN is an acronym which stands for total parenteral nutrition. The parenteral word means into the blood stream or intravenously. So TPN means supplying all the nutrition that a person needs via the blood stream. Many people on TPN are able to absorb some of their nutrition via their gut (by eating and drinking or via a feeding tube into the gut) so many specialists like to use the term PN or parenteral nutrition |
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I have a PEG which I use for feeding at home. I've always wondered why my tube is called a PEG - Please can you explain?
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The term PEG is an acronym which stands for percutaneous endoscopic gastrostomy. The easiest way to explain PEG is to explain each of these 3 words. Percutaneous means through the skin (rather than through an existing opening into the gut such as the nose or mouth). Endoscopic explains the way the tube was put in (a long flexible tube with a camera at one end allowing the doctor to see inside the stomach and upper intestine). Gastrostomy means an opening into the stomach. So if you put all that together you have a tube put in to the stomach through the skin using an instrument called an endoscope - no wonder people prefer to call them PEG's! |
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I have a gastrostomy tube, and have a recurrent problem with over-granulation at the exit site. Do you have any suggestions as to how to deal with this problem? |
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Over-granulation is a harmless extra growth of skin, often found with gastrostomy tubes as the movement of the tube stimulates growth. Some skin is more sensitive or susceptible than others. It does not have a nerve supply so is not usually painful, but can look unsightly. Treatment with topical creams such as Sofradex (Florizel) or Terra-Cortril (Pfizer) can often cure it, or at least reduce it in size, but it may recur, and occasionally requires treatment with application of silver nitrate sticks, which effectively burns down the affected skin. |
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I have PN overnight at home, and have occasionally had a problem with the filter apparently blocking up. Can you suggest any way that this can be avoided? |
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Filters are often used as an added protection against potential infection for patients on PN. They prevent micro-organisms and particulate matter from progressing along the tube into the system. Those used with PN containing fat are 1.2 microns, to allow the fat droplets to pass through. If the PN mixture is made properly, there should not be a problem, however the stability of the mixture should be checked. If the mixture become too warm, the fat content might "clump" slightly which could clog the filter, which is why it important to keep the bag refrigerated prior to putting it up. It is worth checking the room temperature during the night - if it is too warm, you could try attaching a freezer pack to the outside of the PN bag to cool it during the night. Priming the filter with saline before attaching it to the giving set may also prevent any clogging. |
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Please can you advise me on what types of dressings are available for my Hickman line? I currently use a white Primapore 8.3cm x 6cm and wondered if there were any smaller, skin-tone ones that I could use? |
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The question of skin-tone dressings was something that LITRE looked into a short while ago. The manufacturers of dressings were contacted, but unfortunately all felt there was insufficient demand, and that the cost would be prohibitive. There is a paediatric skin-tone stoma bag available, which is a small square shape, and the line could possibly be curled up inside the bag; this may be something worth trying. |
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I need to take my pump when I go on holiday and was concerned about insurance. Should I take out cover for it? |
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It will depend where you are going on holiday. For travel in the UK most homecare company's will say your covered, but if your going abroad they may not. It is always best to check with your homecare company first to what is covered by them and where the cover extends to. If they don't cover your pump where your going you may have to take out your own insurance, also check if its covered on your holiday insurance. |
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My wife had a J-Tube placed approximately 3 weeks ago and the tube has been leaking around the incision site. The doctor seems to think this is somewhat normal, but a serious complication has arisen. The gastric juices are burning her skin, and she is in extreme pain from the burn. I have been trying to keep the area clear and dry, but it is physically impossible for me to keep cleaning the area every 30 minutes 24 hours per day. Even with all of this attention, it seems I have not been able to halt the progress of this burn. Is there any method you know of to dress this site to keep the leakage from burning her skin? Standard dressings just hold leakage to the skin, exacerbating the problem. I tried a large adhesive ostomy pad, with the same results. The leakage went under the pad.
We are currently using a Lanacane/Silvacaine cream to treat the area, but the analgesic effect is minimal. I am desperate to find a solution to ease my wife's pain.
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If there are any stoma nurses or tissue viability nurses attached to the hospital, they may be able to offer some help with this situation. Cavilon cream or spray (3M Healthcare) or Lotriderm cream (Dominion) are often very effective with this kind of excoriation, used in conjunction with a foam dressing such as Lyofoam (SSL). If the exudate is very acidic, an antacid such as Ranitidine may reduce this acidity which in turn should relieve some of the pain |
Current Projects
PUMP COMPARISON TABLES Patients reported that not all pumps were suitable in home situations. We still constantly receive feedback from patients which makes this an ongoing topic.
For 2003 a new survey is under way in conjunction with the MHRA on present pumps.
TPN LINE OCCLUSION A common issue reported to LITRE, so an in depth survey was undertake in June 2003 to look at extensive parameters of incidence. The survey produced 103 returns which are currently under review and will shortly be published.
LEAKING GASTROSTOMY SURVEY A common issue for LITRE , this new study is with specialist centres and is presently under review.
RUCKSACK DESIGN We have established a liaison group of users to comment on the Baxter 6060 pump rucksack and the first session 10 people were involved, this is ongoing.
Past Projects
LITREVIEW A publication for feedback on committee work, ceased due to lack of funds.
LITRE STAND Developed in 1994, updated at various intervals, last update 2002 in response to user comment.
EQUIPMENT SURVEY Covered the period 1990/1995 presented at BAPEN 1995
HOME TPN CHECK LIST Compiled in response to hospital and companies asking what patients needed as minimum requirements. This is no longer required due to better and improved homecare provision.
GASTROSTOMY SURVEY 1995 The survey was presented at BAPEN in 1995, this is an ongoing problem and will be updated in the future.
LITRE DRESSING PACK SURVEY Extensive research into types and items included, looking for the ideal pack.
Conclusion - a final result was not achievable due to variations in practice, it was felt it was not LITRE's roll to dictate practice.
X-ray SAFETY AT AIRPORTS Concerns were raised as to the safety of feeds and pumps passing through X-ray? Advice was sought from manufacturers and University Professor who specialised in X-ray effects. Patients were advised to seek specific details for their products but in general advice received was that they were safe.
UNIVERSAL CLAMPS Patients reported problems with cleaning small areas on their clamps. Industry acknowledged the problem but the cost of changing the design was too expensive. Advice given was to use a soft make up brush to clean them but nothing sharp and to seek out hospital advice.
SKIN TONE DRESSINGS Patients reported social discomfort when stared at with obvious white dressings. Manufacturers were contacted to establish whether they could be skin toned like stoma products. They felt there was insufficient demand and it would be a costly exercise to undertake.
SHARPS CONTAINERS Patients reported issues regarding travelling and sharps containers. Patients were informed that they came in various sizes and they could request these from their Home Care Company depending on their personal needs and duration of travel. Advised to always bring them home for disposal.
TPN FEED CONTAINERS Frequent reports were received in relation to air, gassing out or the champagne effect.
Temperature and storage is related to such issues. Talks with manufacturers prompted research into improvements. Mira med bags were popular with patients as they appeared to reduce problems. Ongoing patients were kept informed via online.
SNAPPED CVC LINE CLAMPS Patients reported snapped line clamps and the problem to have them replaced. Advice was that they should have blue plastic clamps for back up in such situations. One patient informed us of a replacement clamp which did not require a repair thus reducing problems.
TRAVELLING Many questions come in, in relation to this; LITRE has assisted PINNT with the compilation of their Holiday Guidelines free to existing members and £2 to all others. Contact PINNT on 01202 481625 for a copy.
ENTERAL SYRINGES LITRE was approached for comment on the proto type for a new reusable syringe designed for longer life than the standard ones. This is now in production and in use.
In Conclusion
It is difficult for anyone who is not a patient or a carer to appreciate the lifestyle changes that are forced upon patients who need artifical nutrition support. It seems only right that the viewpoint of the patient is listened to and that they are encouraged to be pro-active in their quest for easing the disruption their new lifestyle has on them and their families lives.
Representation on the comittee
There will be at least 2 patients and/or carers on the committee, one receiving parenteral and the other enteral nutritional support. In addition there will be nominated representatives from each of the Founder Organisations of BAPEN.
The Founder Group will nominate their appropriate representative who will be allowed to serve for a term of five years.
Prior to a committee member stepping down from their term of office, their nominated replacement will shadow for at least one meeting to ensure continuity at the hand over period.
In addition to the nominated representatives, further members may be nominated/invited to serve on the committee in a specific capacity.
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