1. 1 Audit: before BANS and beyond Ann Micklewright Dietetic & Nutrition Services Manager Queens Medical Centre, University Hospital Nottingham 22/6/04

2. 2 Todays Presentation History of Home Artificial Nutrition Registers British Artificial Nutrition Survey (BANS) BANS data 1996 – 2003 Future Challenges

3. 3 BANS and before………… 1998: PEN Group survey o880 patients receiving HETF 1980 – 1996: SALFORD HPN Register 1990 - 1996: PEN HETF Register 1996: BANS oPEN Group HETF Register oSalford HPN Register

4. 4 BANS, an initiative of BAPEN National register created in 1996 to: oMonitor at national level the growth of artificial nutrition support in hospitals and the community oTrack changes and treatment outcomes oEstablish the structure of nutrition support services (ANS) in the UK oIdentify problems associated with the use/lack of ANS oAssess standards of care

5. 5 BANS, an audit tool

6. 6 Audit: design State aims & objectives Engage stakeholders oCentres involved in provision oReporters – mainly dietitians Set standards and audit sample

7. 7 Audit: measure Ensure data is valid and reliable oMaintenance of accurate & reliable database oInternal and independent validation Ethics and confidentiality oInformed consent o Post codes Collect and Analyse of data o Interpretation by reporters o Interpretation by BANS

8. 8 AdultsChildren 199620002003199620002003 New2957662965856979951136 PtPr.46561181716890193233744637 PdPr.57271562521028231444375394 Monitor at national level the growth of artificial nutrition support in hospitals and the community

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10. 10 Monitor at national level the growth of artificial nutrition support in hospitals and the community Adults : new registrations constant between 2000-2003 whilst point and period prevalence grew by 11% and 9% respectively since 2002 Children: the number of children starting (11) and continuing (71) HPN similar to previous years 3 years

11. 11 Track changes and treatment outcomes: the HETF adults (2003 ) Swallowing difficulty main reason for feeding (70%) Gastrostomy feeding (85%) more common than NG (12%) and jejunostomy (3%) Most common diagnoses for new patients: oCVA (32%) oNeoplasia (30%) of which 18% were upper GIT cancers Dementia accounted for 4% (254 patients) oPeriod prevalence risen from 341 in 200 to 547 patients in 2003 Increasingly elderly and disabled group o>60% over 60yrs and 45% over 70yrs oOnly 20% maintained nomal activity 30% bedbound, 18% housebound, 31% limited activity o75% patients required help or some help to manage HETF o56% live at home, 35% in nursing homes

12. 12 Track changes and treatment outcomes: the HETF children in (2003) Indications: failure to thrive (34%) and swallowing difficulties (24%) and improve nutritional status Feeding routes : 31% new patients use gastrostomy v 68% with NG and 1% with jejunostomy, once established this changes to gastrostomy (54%) v NG (45%) Disorders of the CNS (41%) main diagnostic group oCerebral palsy (19%) most common oOther diseases (29%) Increase in the proportion of children <1 yr at the start of HETF since 2000 from 22% - 37% in 2003. Over 70% new children in 2003 were under 5 yrs oOnly 38% had full normal activity o91% were cared for at home

13. 13 Track changes and treatment outcomes: HETF – one year outcomes

14. 14 Track changes and treatment outcomes: HPN in 2003 Adult HPN oCommonest diagnosis: Crohns (24%) oCommonest indication: short bowel (36%) oCancer (12%) o87% patients reside at home, are independent (77%) and retain full or limited activity (97%) Childrens HPN oNew patients (11) and continuing (71) similar to previous years 3 years. Data difficult to extrapolate to national picture oMortality at one year was 10%

15. 15 Nutrition Support Teams o 55% adult centres and 27% childrens reported having a team oSome centres had more than one team oNot all reporters responded oTeams still have problems funding nurses and SALTs Establish the structure of artificial nutrition support services (ANS) in the UK

16. 16 Establish the structure of artificial nutrition support services (ANS) in the UK Infrastructure for HETF Services oTraining prior to discharge is undertaken by different health professionals oDietitians are most involved in managing HETF services and as BANS reporters oStaffing levels are adequate in only 13% adult and 29% childrens services oAdditional capacity identified Adults: 46wte dietitians and 26wte nurses Children: 27wte paediatric dietitians and 7wte paediatric community nurses oHome Care Services o87% adults and 77% children starting HETF use commercial company

17. 17 Audit: evaluation Feedback – Annual Report Identify shortcomings and improvements required o Reporters Uni-professional Dissatisfaction with process Time consuming o Data incomplete and/or inaccurate Centres with no reporters Childrens HPN Centres not updating information Data entering inaccuracies

18. 18 Audit - Act Action Plan oIndependent Validation of data HEFT data from South West & former Trent Regions Variation across constituent areas (211-484 million in Trent) Overall point prevalence per million in SW (331), Trent (354) compare to BANS for UK (367/million) o Improve data collection process Electronic Registration Engaging other professions – Nutrition Nurses & Medics

19. 19 BANS – identifying a Cinderella Service? Poor or variable infrastructure oNutrition Support Teams oCommunity HETF staff oFinancial constraints Variation in provision between England, Scotland and Wales oDifference within Europe (HPN) Variable standard of practice Quality of life?

20. 20 Future Challenges Engaging purchasers oEngaging the DoH and local health communities Invest in capacity Funding arrangements Annual growth Payment by results, National Tariff, Patient Choice Benchmark best practice - define the standard of care Maintaining BANS