Intestinal Failure Registry

Sarah-Jane Nelson, Clinically Assisted Nutrition and Hydration Officer, BAPEN Executive & BANS Co-Chair (IF)

The British Artificial Nutrition Survey (BANS) was established in 1996 and consolidated work previously undertaken by the Salford Home Parenteral Nutrition (HPN) Register and the Parenteral and Enteral Nutrition Group (PENG) Home Enteral Tube Feeding (HETF) Register.

BANS data has been influential in the development of nutritional services in the UK. An early achievement was using BANS data to demonstrate inequity of HPN for those with intestinal failure (IF). The result of which was a position paper, in 2008, on HPN services in the UK – ‘A Strategic Framework for Intestinal Failure and Home Parenteral Nutrition Services for Adults in England’ – which laid the foundations for the Home Intestinal Failure Network (HIFNET) proposals.

The Intestinal Failure Registry

NHS England (NHSE) and NHS Improvement (NHSI) commissioned BAPEN to collect data relating to IF and HPN. The registry provides important information about specialist activity and outcomes for patients managed in IF units across UK hospitals. It enables a consistent national dataset to be collected on a secure database to facilitate improvements in quality and clinical outcomes for patients.

Purpose of the registry:

• A tool for NHS coding and tracking of clinical activity
• A registry of data to provide a mechanism for reimbursement of intestinal failure clinical activity
• Provides a quality outcomes tool producing a quality dashboard for intestinal failure specialist services.

“Recording and submitting the required data to the IF Registry is a mandated contractual obligation under the Schedule 6 of their NHS Standard Contract (Specialised Services, Acute), for all Providers delivering specialised Intestinal Failure services. NHS England’s expectation is that providers will provide the required data.” NHSE and NHSI, December 2021.

Current data set

The data set, informed by NHSE requirements for specific data and clinical demand, includes:

• Number of patients and demographics
• Reason for referral to IF service
• Length of hospital stay.
• Anthropometric measurements
• DEXA scan and micronutrients
• Line data
• Surgical data
• Outcome data including changes to number of days on parenteral nutrition (PN), change in prescription, weaning of PN.

Click here to download ‘Figures 1-11’ for an overview of recent data.

Current upgrades: Adult IF Registry

• GLP2 analogue dataset is currently under construction and I will be testing Summer 23
• Surgical section design in conjunction with Association of Surgeons of Great Britain & Ireland (ASGBI) colleagues is in the finishing stages
• Surgical section upgrade then informs NHSE, including quality outcome data for QSIS reporting
• Removal unnecessary/outdated information
• Paediatric Registry is now live – further updates to this have been requested by BSPGHAN
• Wales and Scotland have agreed to start recording Adult IF data – BAPEN as a 4-nation organisation.

Register to report

Finally, if you are representing an Adult IF/HPN centre which does not report already, please register via: https://ifregistry.streetsheaver.thirdparty.nhs.uk/ifreg. Please note that the IF Registry is only available on the HSCN network. For any other enquiries with regards to the IF Registry, please email: bapen@bapen.org.uk.

 

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