- Reference Number: HEY-471/2016
- Departments: Nutrition Support
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This leaflet has been produced to give you general information. Most of your questions should be answered by this leaflet. It is not intended to replace the discussion between you and the healthcare team, but may act as a starting point for discussion. If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team.
This leaflet has been produced to give you general information about your treatment. It will help you understand how Home Parenteral Nutrition (HPN) works. Most of your questions should be answered by this leaflet. It is not intended to replace the discussion between you and your doctor or Nutrition Nurse, but may act as a starting point for discussion. If after reading it you have any concerns or require further explanation, please discuss this with a member of the Hospital Nutrition Team caring for you.
What is Home Parenteral Nutrition?
If you are already on Parenteral Nutrition, you will have some idea of what is involved. Home Parental Nutrition (HPN) is feeding directly into the blood stream at home. The feed is usually given through a long term central venous catheter tunneled under the skin using a special pump. Patients on HPN usually have their feeds over 12 to 14 hours at night. Feeds and equipment are supplied by a commercial homecare company, but all other aspects of HPN are managed by the Hospital Nutrition Team.
Why do I need Parenteral Nutrition?
Parenteral Nutrition is used when a person’s small bowel is not capable of absorbing enough food. This is called intestinal failure. It may be caused by:
- Blockage of the intestine.
- A leak from a fistula or a false passage.
- Disordered movement of the small bowel.
- A shortened or otherwise damaged small bowel.
Intestinal failure may be temporary or permanent.
HPN is also sometimes used to improve a person’s nutritional state prior to surgery. If you are not sure which of these applies to you, please ask your ward doctors or a member of the Hospital Nutrition Team.
Can there be any complications or risks?
Serious problems are rare if the protocols and advice provided by the Hospital Nutrition Team are followed. Dehydration is a risk for some people (mainly people with high fluid losses).
Infection of the central line occurs about once in every 12 months on average, but this will depend on how well you look after your central line. Blockage of a vein due to a clot forming around the central line (thrombosis) is rare. Both of these problems, however, require admission to hospital for treatment. Bone disease and / or liver disease can occur over several years.
What are the benefits?
The aim of HPN is to allow people with intestinal failure to go home and to live as normal a life as possible. Many people on HPN go out to work, look after a family, go on holiday and take part in sport and social activities like anyone else.
Are there any alternatives?
HPN is not usually considered if there is another way of keeping a person well nourished. If people cannot eat normally, a tube placed into the stomach or upper intestine is sometimes used for feeding. However, this does not usually work in people with intestinal failure. If you wish to discuss possible alternatives in your case, please ask a member of the Hospital Nutrition Team.
How is Parenteral Nutrition given at home?
The Hospital Nutrition Team normally uses tunneled central venous catheters for HPN. A tunneled central venous catheter is a tube which is inserted into a large vein in the neck or shoulder. It is usually placed in theatre or the X-ray department using a local anaesthetic. The catheter is tunneled under your skin for 2-4 inches and has a section outside the body with a small plastic clamp and a hub where feeds can be connected. Tunneled catheters can have one external section (single lumen tubing) or two (double lumen tubing).
When can I go home?
HPN usually takes several weeks to set up. During this time the Hospital Nutrition Team apply for funding, select a homecare company and train either yourself or someone close to you to look after your tunneled line. You should be able to go home when this has all been done and anything else you need has been arranged.
What support will there be for me at home?
The Hospital Nutrition Team will provide the following just before you go home:
- Details of your homecare company.
- How to contact the Hospital Nutrition Team.
- Follow up arrangements.
A nurse from the homecare company will visit you in hospital prior to discharge. The Hospital Nutrition Team will also arrange a home visit with yourself and the homecare nurse before you are discharged home.
The homecare company will give you a 24 hour helpline telephone number for use if you have problems with any of the equipment or deliveries. Members of the Hospital Nutrition Team will also be contactable through the hospital switchboard. Your General Practitioner (GP) will have details of your treatment but should not be the first person to call about any problems with your HPN.
What information will people have about me?
A brief letter explaining the situation is faxed to the Clinical Commissioning Group to gain their agreement to pay for your HPN. The homecare company that the Hospital Nutrition Team choose for you will usually receive a similar amount of information about your case, but they will also need to know your name, address, telephone numbers and your GP’s contact details.
The Hospital Nutrition Team registers all patients on HPN with the British Artificial Nutrition Survey, but the information they require does not allow individuals to be identified.
Members of the Hospital Nutrition Team also hold their own records to enable them to look after you.
What happens if / when I do not need Parenteral Nutrition any longer?
The Hospital Nutrition Team usually leaves the tunneled line in for a few weeks after someone stops HPN, just in case there is a need to restart it. The hospital will arrange removal of the tunneled line and equipment when it is certain that you no longer need HPN.
Where can I find out more about HPN?
A copy of the “HPN Handbook for Patients” will be given to you within the next few days. This will provide you with more information. Members of the Hospital Nutrition Team will try to answer any other questions you have if they can. There is a patients’ organisation called “PINNT” (Patients on Intravenous and Nasogastric Nutrition Therapy) which publishes a newsletter and other useful information. They can be contacted on:
PO Box 3126,
General Advice and Consent
Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.
Consent to treatment
Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.
The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:
- you must be able to give your consent
- you must be given enough information to enable you to make a decision
- you must be acting under your own free will and not under the strong influence of another person
Information about you
We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.
We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.
Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.
If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.