| 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
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
| Q |
|
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? |
| A |
|
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 |
|
Q |
|
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?
|
| A |
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! |
|
Q |
|
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? |
| A |
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. |
|
Q |
|
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? |
| A |
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. |
|
Q |
|
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? |
| A |
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. |
|
Q |
|
I need to take my pump
when I go on holiday and was concerned about insurance.
Should I take out cover for it? |
| A |
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. |
|
Q |
|
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.
|
| A |
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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