Scottish Home Parenteral Nutrition
Managed Clinical Network
Information on
Home Parenteral Nutrition
For patients and carers
Contents / PageContacts / 4-6
Introduction / 8
Questions you may ask / 9-13
Possible complications / 14-17
Going home / 18
Care after discharge / 19
Example of stock required / 20
Some useful explanations / 21-24
Procedures / 25-32
Training confirmation / 33
Nurse specialists in nutrition from throughout
Scotland in conjunction with the Home Parenteral Nutrition Managed Clinical Network compiled this booklet. Its aim is to encourage/promote evidence-based practice and provides a reference document for nurses and adult patients to use when training for home parenteral nutrition. There may be areas where there is difference in practice but the core procedure/protocol is provided. A list of the contributors and contact numbers is provided to allow for advice to be sought. Areas have been left blank to allow the trainer to insert local names and contact numbers. A companion document to this is available from the managed clinical network with more detailed information for the trainer.
2
Adult Nurse Specialists / Telephone / e-mail addressDorothy Barber,
Aberdeen Royal Infirmary / 01224 552946 /
Kirsty Turnbull,
Julie Fyall
Ninewells Hospital, Dundee / 01382 740078 /
May Shaw,
Queen Margaret, Dunfermline / 01383 623623
Ext.4328 /
Carol Muir,
Lorraine McVie
Edinburgh Royal Infirmary / 0131 536 1708 /
Fiona MacKay,
Dawn Jordan
Glasgow Royal Infirmary / 0141 211 4077 /
Joan Dimmick,
Lynsey Watt
Western & Gartnavel, Glasgow / 0141 211 1014 /
Linda Davidson,
Karen Keirnan
Victoria Infirmary, Glasgow / 0141 201 5243 /
Gill McHattie
Craig Hurnauth
Southern General, Glasgow / 0141 201 1167/1168 /
Lesley Faulds
Crosshouse Hospital, Kilmarnock / 01563 521133 /
Nancy Smith,
Jaqueline Gay
Royal Alexandra Hospital, Paisley / 0141 314 7117 /
Paediatric Nurse Specialists
Merrie Dwan
Aberdeen Children’s Hospital / 01224 553641 /
Catherine Paxton
Royal hospital for Sick Children, Edinburgh / 0131 536 0612 /
Christina McGuckin
Isobel MacLeod
Yorkhill Children‘s Hospital, Glasgow / 0141 201 9343 /
Karen McIntyre
Sarah Nicoll
Ninewells Hospital, Dundee / 01382 660111 /
CONTACTS
Nurse
Ward Nursing Staff
Dr.
Dietitian
On call consultant biochemist 5pm-9am
Via main switchboard:…………………………………..
Pharmacy
BUPA Home Healthcare, Units 3 & 5, Weardale Lane, Queenslie Industrial Estate, Glasgow, G33 4JJ freefone: 0845 8888238
Regional Manager / Susan Wood
07971 499450
Business Development Manager / Elaine Stewart
07943 814331
Senior co-ordinator
/ Eileen McGuire
0141 766 2578
Co-ordinators
/ Ann Marshall, Yasmin Naseem, Sandra Paterson
0141 766 2578
PATIENT SUPPORT GROUPS
It is often helpful to talk to someone else who is in the same situation as yourself. The nursing staff can arrange for you to speak to someone who is already on PN. Support groups are very helpful and can help you to adjust to your new lifestyle.
· Patients on Intravenous and Naso-Gastric Nutrition Therapy
PO Box 3126
Dorset
BH23 2XS
Telephone
Carolyn Wheatley: 01202 481625
Web site: www.pinnt.com
A Scottish branch of PINNT meets three times a year.
Contact:
Vacant meantime
E-mail:
The aim of this booklet is to provide answers to some of your questions and provide you some of the information that you will require. You may have some idea of what is involved or it may be completely new to you. You may be feeling anxious at the prospect of going home and are unsure whether you will be able to cope. Don’t worry the nursing staff will give you all the time and attention you need until you feel totally comfortable, capable and able to cope at home. The time taken to learn the procedures, varies from patient to patient, there is no rush. A rough guide would be 4 weeks.
We also like to involve members of your family so please give them this booklet to read.
At the back of this booklet is a sheet, which you and the nurse training you will sign once you feel competent. This is not a termination of your training but an indication of what you have learnt. The support and guidance will be ongoing once you are discharged.
I hope you find this booklet interesting and helpful. This is your copy to keep, please feel free to write comments and reminders on it for yourself.
Nurse Specialist
Introduction
The medical and nursing staff who are looking after you believe that the best way for you to maintain nutritional well-being after you leave hospital is to be fed directly into a vein. This is called Parenteral Nutrition (PN).
There are several reasons why this may be required
1. Your gut may be unable to absorb enough nutrients.
2. You may have recently lost weight and be in need of replacement nutrition
3. You may need to gain weight prior to surgery.
4. You may have had an operation and require to have PN for a short time while you recover.
There are many reasons why PN is required. Your doctor will have discussed this with you, however if you are still unsure ask your doctor to explain it to you again.
Questions you may ask:
What is Parenteral Nutrition (PN)?
You will normally hear it called PN. This stands for Parenteral Nutrition. It is a method of giving you all the nutrients that you need to stay healthy. Your feed is given directly into your bloodstream. This means that your gut does not need to breakdown food.
What is in PN?
PN provides all the things that your body needs that are normally taken by food and water.
Components include
1. Nitrogen - This is the protein that your body requires for building tissues.
2. Carbohydrates - This gives you a source of energy.
3. Fats – Another source of energy.
4. Sodium - Salt. This is necessary for your fluid balance.
5. Potassium - This is another salt essential for normal functioning of all your muscle tissue.
6. Calcium - This is needed for healthy bones; it is also essential in the blood clotting process.
7. Magnesium - This is required to support the function of your nerves and muscles.
8. Phosphate - This is important for energy production.
9. Trace elements and Vitamins required in very small amounts for healthy tissues
How is the parenteral nutrition given?
PN comes in a large bag and is slowly infused into your bloodstream usually during the night. A pump controls the infusion rate.
How often will I need Parenteral Nutrition?
Every patient is an individual. You may require parenteral nutrition every night although most patients have at least one night off per week. Many patients have Parenteral Nutrition for three or four nights a week.
How is the catheter inserted?
You will be taken to either theatre or the x-ray department where you will be given a local anaesthetic and something to make you drowsy. The doctor will then place a soft narrow tube into a vein in your neck or the vein below your collarbone. The tube will lie underneath the skin and come out on your chest wall. You may feel slightly uncomfortable afterwards, but you will be given a painkiller, as needed.
You may need a chest X-ray before we can use your catheter to check the position of the tip of the catheter. It should lie in a large blood vessel that sits just outside your heart. You may not start feeding until the following day when the medical staff will have checked your X-ray.
You may have two dressings in place on return from theatre. The catheter will be secured with a stitch, which will need to be removed in approximately 4 weeks. You may also have one or two stitches where the doctor inserted the catheter; these will be removed after one week.
Once the stitches are removed your catheter will be held in place by a small cuff, which embeds into your tissues just under the skin.
You may have an implanted port, which is basically the same as described above. Nothing is visible on the outside chest wall as the port is implanted under the skin of the chest wall and can be accessed by inserting a special needle (“Huber”). To insert the port you will go to an operating theatre or x-ray department and may have a general anaesthetic.
You will have a wound with stitches, which will be removed after approximately one week.
Why can’t I eat normally?
Your gut breaks down and absorbs the food you eat but your gut is not working properly. Your doctor and nurse will explain this to you more clearly. You may still be able to eat food and you will gradually learn what foods and drinks you can take which will not cause you problems.
Will I feel hungry?
Although Parenteral Nutrition provides you with the nutrition you need it will not give you the same pleasure as eating. Some patients still feel hungry. At times you may be able to eat however if you are unwell your Doctor may ask you to stop eating for a short time to completely rest your gut.
What will happen to my bowels?
This depends on your particular condition. Although it is often possible to eat while you receive PN, the food you take may not be absorbed properly. If this happens you may suffer from diarrhoea and flatulence and you may experience stomach cramps. Your doctor and dietitian will advise you about eating and drinking. Even if you do not eat, your bowels will continue to work, as the bowel wall always produces fluid and mucus.
How do I get all the equipment and supplies I will need?
A 'home care' company specialising in the care of people at home on specialist treatments will be appointed by the hospital to supply all that you require at home for your parenteral nutrition administration. The installation will be carried out before your d/c.
What about bathing and showering?
You may have a bath or shower at any time. Prior to bathing, ensure that your dressing is intact and change the dressing if there is any sign of leakage/or loose/damp.
How will this affect my life?
Like anything new in your life you will have to make adjustments to your lifestyle. Usually you will give your PN overnight so that you can continue with your daytime activities. If you are well, it may be possible for you to work, look after your family, and take part in social functions and sports. You can continue with sexual relationships.
It is also possible to go away on holiday if preparations are made in advance. Detailed discussion between your nutrition team and the commercial company should start as soon as you think about going on holiday. If you need dental treatment, speak to your nutrition nurse, who will right to your dentist.
If you have been ill for a long time, parenteral nutrition may make you feel better than you have been for some time. If this is the case, you will probably feel the adjustments you have made are worth the trouble. If you have been started on parenteral nutrition as the result of sudden traumatic illness then it may take you longer to accept your life changes.
What if it does not suit me to always feed overnight?
Because you will be infusing a large volume of fluid overnight you will find that your sleep pattern will be disturbed by the need to go to the toilet more often. Some people find this too exhausting and like to change their times of infusion to during the day. This should not be a problem, discuss how you feel with your nurse at the clinic.
How will I cope?
You will be taught to give yourself PN while you are in hospital and you will be an expert before you go home. Do not feel pressurised you will only be discharged home when the staff feel you are ready. Do not feel alone there are other people at home who feed themselves this way and cope very well.
Are there any complications?
As with any treatment the risks have to be weighed against the benefits. There are possible complications but you will be taught how to avoid these and what to do if they happen. These possible complications are discussed in greater depth in the next chapter.
Possible Complications:
Infection
The biggest risk of PN is an infection. The central catheter increases the risk of invasion of bacteria, this can occur because the body’s natural defence-mechanism, in this case the skin has been broken. It is essential that all policies and procedures are strictly adhered to as this minimises the risk of infection. Infection rates will be low if patients and staff are particularly careful about the policies and follow them exactly. There are two areas, which can become infected. Firstly the catheter exit site (where the dressing covers) or secondly the hub of the catheter (where you connect and disconnect your feed).
Exit Site Infection
This would be suspected if your exit site becomes red or tender with or without a discharge. It is important that you contact the hospital if this happens. You will be asked to come to the hospital where the nursing staff will take a wound swab and send it to the laboratory. If this infection is minor and caught early it can often be healed with an antibiotic or an antiseptic cleanser. If your exit site is moist and leaking it is very important that you do not use a clear dressing. These dressings are excellent however they only work if the exit site is clean and dry not if moisture is allowed to build up. If this happens, the nurses will ask you to substitute the dressing.
Catheter Hub Infection
This may be suspected if you suddenly feel unwell - you may feel very hot and feverish. You may also feel very cold and be unable to stop shivering; you may have a high temperature. If you feel like this it is essential that you contact the hospital immediately. These symptoms may not be from your catheter however you need to be carefully assessed. If your catheter is infected it may be possible to treat it with antibiotics however it is sometimes necessary to remove the catheter.