PINNT offers advice to feed related questions. For instance, in the past we spent a lot of time advising patients with benefit claims and appeals. Many members will need on-going help for the rest of their lives and this type of practical assistance is of great help in times of stress. Our support network is available to everyone involved in patient care.
Equipment issues
Historically, most of the equipment being used by homecare patients on parenteral or enteral feed was intended for use in hospitals, not the home. Our members had, and continue to have, clear ideas of what is acceptable in terms of portability and general user-friendliness.
To this end PINNT continues to work very closely with LITRE (Looking Into The Requirements for Equipment), a standing committee PINNT. LITRE is able to bring problems to the attention of professionals and industry.
Between us, we have already achieved many improvements, including bringing portable pumps to market, modifications to PN pumps and special drip stands amongst many others and we look forward to many more.
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Going on holiday
We offer a comprehensive ‘Holiday Guidelines' booklet, which has been compiled from the experiences of many intrepid PINNT travellers, both and home and abroad. We can also give advice on obtaining travel insurance.
We believe a holiday should be a well-deserved pleasurable experience for all concerned. Indeed, our members have travelled from Australia to Zimbabwe and anywhere in between!!
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Medical Issues
All patients have individual medical needs; therefore PINNT believes that you should discuss all treatment-related issues fully with your healthcare team. No advice or personal experience can be taken as advice or endorsed by PINNT or its trustees. Nothing substitutes visiting your own healthcare team or GP.
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Support for medics
You may think we have this the wrong way round, but we do in fact provide support for healthcare professionals.
Where requested we can supply speakers at conferences and symposia, outlining the realities of nutrition therapy from the patient's perspective. We can delve into our extensive range of contacts and provide up-to-date advice and comment on artificial nutrition issues. We can facilitate contact between all healthcare professionals from within and outside the NHS.
If you need some specific information, please email us from our Contact page.
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Talk about it
Many members feel the need to talk about their experiences and emotions.
Patients may have been through a long illness and in all probability major surgery or surgical trauma; sometimes they can feel unable to discuss their problems with those closest to them, and that an outsider who has been through similar experiences will be able to offer a sound ear. We therefore actively encourage as much contact as possible between members.
We also use social media to allow our members to communicate. Currently we use Facebook and Twitter.
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Glossary Of Common Terms.
This is not an exhaustive list!
If you hear any term that you don’t understand, please ask someone to explain it to you.
Catheter
A fine hollow tube used to introduce fluid into a vein. Referred to by the manufacturers’ name e.g. Broviac or Hickman
Catheter Hub
The part of the catheter which connects to the giving set or catheter cap.
Electrolyte
Mineral which conducts chemical energy when dissolved in water e.g. Sodium, Potassium, Chloride.
Emulsification
The mixing of two substances which are not normally mixable with the use of a substance that can mix with each.
Entry Site
The place where your catheter is inserted into the vein.
Exit Site
The place where the catheter comes through the skin (and is covered by a dressing).
NB. Some catheters are implanted and the exit site will be just under the skin.
Fistula
An abnormal opening between 2 organs, or between 1 organ and the skin.
Giving Set
Specifically designed tubing to connect the feed container to your catheter.
Haematocrit
Volume of the blood that is composed of red blood cells. A high Haematocrit indictates dehydration.
Hyperglycaemia
A high blood sugar level
Hypoglycaemia
A low blood sugar (also called a ‘hypo’)
Ileus
Paralysis of at least part of the GI tract.
Infusion
The process whereby fluid is delivered into the vein.
Intravenous
Going directly into a vein.
Parenteral
“to eat via a vein” (literal translation)
Saline
Salt solution.
Short Bowel Syndrome
Resulting from the removal of a portion of the small intestine, with characteristic symptoms; including impaired digestion & absorption.
Septicaemia
A widespread infection carried in your bloodstream.
Tolerance
The degree to which symptoms arise from an infusion of formula.
PN/TPN/HPN
Parenteral nutrition /Total parenteral nutrition /Home parenteral nutrition – when all or some of the nutrients or fluids needed are delivered directly into the bloodstream.