NEC UK Welcome the launch of our 1st edition of The NEC Passport, this loose-leaf booklet has been developed by NEC UK in conjunction with parents from our support group and our NEC UK MAP Members. We aim to produce a series of additional sheets on ‘complex NEC’ and teenage/adult service transition.

 

The NEC passport was designed as families feel there has been a large information gap when their child developed NEC. Most families hadn’t heard of NEC until their baby had it.

 

This loose-leaf booklet is designed to meet the needs of all families pre and post NEC diagnosis. It gives you the ability to add or remove the sections that aren’t relevant.

 

We view this as additional information you can download and add to your child’s (Personal Child Health Record) also known as the 'red book', this is a national standard health and development record given to parents/carers at a child's birth.

 

The NEC Passport loose-leaf Sections Include:

• What is NEC & How to reduce the risk of NEC

• A Guide to spotting NEC

• Treatments for NEC

• Surgical words and meanings

• Normal large bowel anatomy

• Normal small bowel anatomy

• Your child’s anatomy (first operation)

• Subsequent operations

• Discharge anatomy

• NEC related problems in the NICU

• Including: Failure to thrive

• TPN dependence

• Feed intolerance

• Lines/infections

• Milk choices / Constipation

Young child problems Includes:

• Growth

• Constipation

• Toilet training

• Developmental delay

• Useful contacts & Media links

Information for professionals

• Words used and abbreviations

• Useful contacts & Media links

 

Many families reported still not knowing exactly what surgery or implications of them. This is particularly relevant as the child grows many report having to describe multiple time to professionals who are unfamiliar with NEC. We worked very closely with our medical advisory team to create something that’s easy to use for professionals and families keeping all the information together in one place. This has been very successful with other medical conditions particularly those that are rare.

 

If you are a Healthcare professional, we would really appreciate your support to get these in your units so they are accessible to families affected by Necrotising Enterocolitis.

 

The NEC Passport will be reviewed annually to ensure all pages are up to date as possible in supplying the vital information to parents and professionals.

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We welcome any feedback or questions please contact us. These are available to download but we have professional printed copies available ideal for families long term.

 

NEC UK Registered Charity number: 1181026

Website: www.necuk.org.uk

Email: info@necuk.org.uk

Enquiries: 07375813907

Address: 42 Long hill Rise, Annesley, Nottingham, NG17 9FG