At most Children's Hospitals there are Specialist Nurses who have specialist knowledge and training in the care of children affected by SBS and intestinal failure and their families.

One of their roles is to ensure that children and families who are going home with parenteral nutrition (PN) via a central venous catheter (CVC) or central line - are trained and assessed as safe and confident at giving PN at home. Also that the children are able then stay at home safely.

The PN and central line training This training for parents is in combination with written instructions that can be translated into any language. The training will progress at the pace of each individual learner as everyone takes different periods of time to learn all the aspects of care.  Practice takes place using ‘pretend’ central lines and the equipment families will be going home with. 

Once learners are at a certain stage they will start caring for their child’s central line and PN with staff support and supervision until they are deemed competent and their training pack is ‘signed off’. At this point then they take over the care of the PN and central line while their child is still in hospital so they have the support of the staff if needed.

The Specialist Nurse will ask you if they can do a home assessment so that they can advise on the best place to care for your child and advise on how much room will be needed for all the equipment. The equipment will then be delivered to your home before your child is discharged so that you can plug in the pumps and fridge as well as get to know the equipment and store it away safely. The equipment and PN may delivered by a specialist company like Calea (0800 121 8300) who will ring weekly for a ‘stock take’ so that you can inform them of your needs.

A discharge planning meeting is usually held prior to you going home so that anyone within the community and hospital who deals with your child have an opportunity to discuss their needs prior to them going home. This ensures that any community care that is required is set up or agreed with you before discharge.

When you go home for the first time with PN at night – support will be given and then they will be available to share home visits with the community nurses if you wish. 

We have a land line number for RMCH – 0161 701 7914 

On going care and support –This is done by a multidisciplinary team approach – doctors, dietitians, play therapists, nursing staff, psychology, and pharmacy. They will ensure that bloods are taken when needed, that weights and heights are recorded and that any additional professional who are involved in your child’s care are trained appropriately and kept up to date with their care e.g. nursery/school.