Almost four years ago, at a Clinicians Development group meeting in Cambridge, concerns were raised by neonatologists about their perceived incidence of NEC in their local units. As we sat around the table, acknowledging the challenges of the disease - unknown aetiology, no national definition, no database to collect data etc, we considered possible ways forward. Fast forward to this summer, four years later: a region with statistically significant higher breastfeeding rates at discharge than the rest of the country; a region with a nationally acclaimed and used Enteral Feeding Guideline; a project which has seen collaboration with partners from industry, national as well as charitable organisations, Bliss and NHS Improvement agencies. With increasing recognition of the value of human milk in the management of preterm infants, calls for national dissemination and requests for adopting the methodology used to implement the care bundle abound. To meet these requests and to ensure our work is not lost in the changes brought about by the New NHS structures, our project has been written up as a legacy document with a two fold purpose:

To acknowledge and celebrate the journey that the east of England perinatal teams have made through the development and implementation of the NEC care bundle.

To respond to the call for national dissemination of the work by producing a user friendly document for any unit, network, or region to implement the bundle. We have mapped the work against the NHS Change Model for this purpose so that units can use an evidenced based methodology to support implementation. Your stories and our Hints and Tips on implementation have all been included. With both Lynne Radbone and my role no longer formally in existence after the end of June, we have had to ensure that all aspects of the project have been safely aligned with other leads and network work streams to ensure our good work is maintained. Page 3 clarifies how this will be taken forward. Lastly, NDAU have completed their analysis of the impact of the bundle. Some of these findings are presented in this newsletter but all findings will be presented in depth and in their entirety at the Celebratory Event being held on the 10th September. There will be 5 - 6 places per unit allocated at the event so we look forward to seeing as many of you there as possible. The event will include all those who have collaborated and shared the journey and we look forward to formally closing the project management aspects of the work at this forum, knowing that the bundle will long continue through your hard work and commitment. Michele Upton Project Lead, NEC care bundle. Michele.upton@eoescg.nhs.uk

Inside…………………… The Journey ……………………………………………………….. Page 2 Protecting the future of the bundle ……………………………. Page 3 Did the bundle make a difference? …………………………… Pages 4 - 10

NEC NEWS Your monthly update on the NEC

care bundle project Issue 14 - July 2013

Working together to reduce NEC and improve outcomes

2 NEC NEWS Working together to reduce NEC — the journey

Hand expressing posters and leaflets

Thanks to the expertise within the region, liaising with national experts on hand expressing and breast massage, and the generosity of photographers who have agreed to share their photographs, we have been able to produce a pictorial aid to support mothers to achieve the 6 hour window to expressing. This work has taken time to develop but we now have 500 posters and 15 000 leaflets distributed across the region for use in our maternity and neonatal areas. Please make full use of these to support mothers by making them available in antenatal areas as well as in the information packs. These are not cheap to produce and every unit has received approximately 1-2 years worth of leaflets so please make sure they are used effectively. Many thanks to the Maternity and Newborn SCN for funding

these.

Through producing the poster there have been several queries relating to antenatal expressing. Please note that this is advocated for diabetic mothers only! There is a small risk of initiating preterm labour if antenatal expressing is started in mothers of preterm babies.

Clinical concerns raised.

Care bundle approach to reducing NEC.

MDT with representation from each unit

called for.

09/2009 12/2009 01/2010

First monthly meeting of NEC

working group

06/2010

3 Care bundle

elements agreed.

Case note reviews carried

out.

09/2010

Final elements agreed. Plans for implementation

finalised.

Regional teaching carried out by

Lynne and Michele

11+12/2010

NEC care bundle implemented

across the EOE

01+02/2011

Collaboration with NDAU

03/2011

1st

issue NEC

NEWS

NDAU validation

studies begin

05/2011

Launch day at Girton College

01/2011

Overall compliance rates of xx% across the

region

07/2011

Nutrition Pathway

designed and implemented

04/2012 06/2012

National recognition and

calls for dissemination

begin.

THE NEC CARE BUNDLE JOURNEY

NEC NEWS

3

What happens next to...

Quarterly audits: these need to continue to maintain the high standards we are trying to achieve in some units and to maintain in others. It is only with this transparent measurement and feedback that staff will know how they are doing and will be able to improve and maintain the standards we expect from the work done so far. We know from this and other projects that when the focus is taken off the work, standards drop. If this happens in your unit, increasing the frequency of auditing to monthly or even weekly for a while until compliance improves again, can be effective. The working group were keen that a regional overview of audit results was maintained and the suggestion is that the Benchmarking group take responsibility for these. The next audit date will be at the end of September and a reminder will be sent closer to the time through this group.

Nutrition Pathways: 15 000 copies of the Nutrition Pathway and Expressing log were printed and distributed earlier this year. This quantity should see every unit through the next 2 years if used judiciously. Please do not file unused pathways, they are not a cheap resource and can be used for other babies. Once a reprint is required, the network will be in a better position to agree funding for further print runs.

Guideline review: the regional governance group will take over responsibility for guideline review in the new network. Following the recent update in April, the guideline will need reviewing again in April 2016, unless new evidence comes to light before then. Dissemination: the legacy document offers a comprehensive guide to implementation of the bundle using the NHS Change Model as a framework. We are currently working with the NHS IQ to map this accurately and are following up opportunities for funding for publication.

Findings

Delivering High Quality Neonatal Care for the east of England Preterm and Sick Baby

12.8

3641

6470

67

9085

62 64

77

0

10

20

30

40

50

60

70

80

90

100

Feb March April May June July Aug Sept Oct Nov Dec

Regional compliance of all care bundle elements year 1

Dates for your diaries

The Celebratory event will be held on the 10th September 2013. This will be an all day event, finishing at 16:00. The venue is the Old Hall, Girton College, CB3 0JG.

NEC audits will be due in via the Benchmarking Group in late September.

4 NEC NEWS

Selected findings and outcomes - (more at the celebratory event!)

Breastfeeding rates at discharge:

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Q1 2010

Q2 2010

Q3 2010

Q4 2010

Q1 2011

Q2 2011

Q3 2011

Q4 2011

Q1 2012

Q2 2012

Q3 2012

Q4 2012

Q1 2013

Feeding rates at discharge to home: regional results per quarter

Data Missing

Formula

Mixed

Breast

Statistical analysis from NDAU: The percentage of babies who were exclusively breastfed on discharge increased by 0.22(95% CI 0.11, 0.34 p<0.001) per month in the East of England and 0.05% (0.01, 0.09, p=0.01) per month in the rest of the UKNC. Monthly rates for any breastfeeding were on average 3.0% higher (1.2, 4.9 p=0.002) in the

EoE region compared to the rest of the UKNC.

In 2010 the rates of breastfeeding at discharge were starting to improve and this trend continued into 2011 but no faster than the trend already taking place. Therefore there was no evidence that rates of breastfeeding at discharge in East of England improved following the introduction of the care bundle beyond the pre-existing pattern of improvement, regardless of whether we look at exclusive or any breastfeeding. However! Exclusive breastfeeding rates in the EoE region improved significantly faster than the rest of the UK Neonatal Collaborative (UKNC) which was still true after adjustment for confounders.

5 NEC NEWS Exclusive breastfeeding rates at discharge - EoE and the UKNC:

Percentage of babies exclusively breastfed in the East of England (blue dots for data, green line for estimated trend from regression) and the rest of the UKNC (red dots for data, yellow line for estimated trend from regression) by month of discharge.

The trend in EoE was statistically significantly improved compared to the trend in the rest of the UKNC.

National

East of England

Any mother’s milk given at any stage of the

neonatal stay*

70% 77.6%

Babies receiving their first feed (any enteral

feed) within the first 2 calendar days

83% 86%

Receiving any breast milk at discharge

61% 66%

The table below compares EBM use in the EoE

with the national average in 2012

NEC NEWS

6 Percentage of care days where the baby received mother’s milk

Data on around 330 thousand care days for EoE and 2.85 million care days from the rest of

the UKNC were available over 2009-2012, for babies born ≤32+6

weeks gestation.

The Interrupted Time Series (ITS) analysis showed that the percentage of care days where

the baby received mother’s milk was in slight decline prior to the introduction of the bundle

(-0.3% per month, 95% CI (-0.6, -0.06) p=0.02).

Following introduction of the care bundle, there was a significant improvement in the trend

for monthly % of care days where the infant was fed mother’s milk.

However the same pattern was observed in the rest of the UKNC (with no statistically

significant difference between the two regions) so the improvement cannot be solely

attributable to the bundle.

Both regions (EoE and the UKNC) showed a significant trend change after introduction of the care bundle in Feb 2011 (time point indicated by red line), therefore estimated trends from the ITS segmented regression analysis are shown (green line).

NEC NEWS

7 NEC incidence

It was not possible to investigate the impact of the care bundle using ITS as the number of

surgical NEC cases per month was too small.

Annual incidence was used as an outcome rather than monthly due to the low number of

cases.

Annual incidence as a percentage of first admissions was calculated for each of the

following gestational age groups ≤25+6

, 26+0

to 27+6

, 28+0

to 29+6

, 30+0

to 32+6

.

It was not possible to compare with UKNC due to poor data capture in the rest of the

country.

Surgical and mortality related NEC incidence in 2009 was higher than in the following three years. Incidence more than halved across all gestational groups in 2010 which was prior to implementation. This appears to correspond to higher usage of human milk.

NEC incidence saw a small increase across all groups in 2011 and again in 2012. The highest increase was in the most vulnerable gestational and weight groups.

There were no statistically significant changes in surgical NEC incidence which could be at-tributed to the care bundle. After adjusting for gestation, there was a significant reduction in surgical NEC from 2009 to 2010 (adjusted incidence rate ratio 0.52 (0.33, 0.83) p=0.006), but there was no subsequent year-on-year change, nor was there any evidence of a linear trend.

NEC NEWS

8 Parenteral Nutrition (PN) use

The graph shows the monthly % of care days where PN was given for EoE (blue) and the rest of the UKNC (red), with corresponding lines estimating segmented linear trend from a model combining both regions.

Both regions showed a significant increase in PN use before the bundle was introduced and a significant step change at the point of introduction (indicated by the green line). After the bundle was introduced, trends in the two regions diverged but individually were not statistically significant.

The ITS analysis showed that in the EoE, PN use was rising before the introduction of the bundle (0.33% per month (0.18, 0.49) p<0.001). While the trend reduced to 0.14% (-0.03, 0.32) per month after the bundle, this trend change was not statistically significant (p=0.1). There was a significant step reduction in PN use at the point of introduction (4.5% decrease (-7.6, -1.3), p=0.007). There was no evidence of autocorrelation in the data.

Comparing with data from the UKNC showed similar trends before the bundle was introduced, but divergent trends after. Prior to the introduction of the bundle, PN use in the UKNC was on average 1.6% lower (95% CI (-0.72, 0.39) p<0.001) than in the EoE, but PN use was increasing at a similar rate in both regions (p-value for difference in trends pre intervention = 0.22).

After the bundle was introduced, trends in the individual regions were not statistically significant, but appeared to diverge (p=0.04 for difference in trends).

NEC NEWS

9 Summary of findings Exclusive breastfeeding rates in the EoE region improved significantly faster than the rest of

the UKNC over the 4-year evaluation period. The rest of the UKNC had higher rates of exclusive breastfeeding than EoE at the start of 2009 but EoE had overtaken UKNC by the end of the period. The same pattern was observed after adjustment for confounders.

Over the four year evaluation period the percentage of babies who were exclusively breast-fed on discharge increased by 0.22% (95% CI 0.11, 0.34 p<0.001) per month in the EoE region and 0.05% (0.01, 0.09, p=0.01) per month in the rest of the UKNC.

The rate of exclusive breastfeeding was 5.1% (1.7, 8.5 p=0.004) higher in the rest of the UKNC compared to EoE at the start of the study period but this difference was no longer apparent by the end of the period (UKNC 3% lower 95% CI -6.3, 0.3 p=0.07).

The unadjusted odds of exclusive breastfeeding increased by 1.1% per month (OR 1.011 95% C1.006, 1.016 p<0.001) in EoE and 0.3% per month (OR 1.003 (1.001, 1.004) p<0.001) in the rest of the UKNC, with a statistically significant difference between trends in the two regions p=0.002).

The odds of exclusive breastfeeding were similar after adjustment (EoE OR 1.012 (1.007, 1.017) p<0.001; UKNC OR 1.003 (1.002, 1.006) p<0.001; p-value for difference in trend between regions <0.001).

The adjusted odds of exclusive breastfeeding were 31% higher in the UKNC at the start of 2009 (OR 1.31 (1.13, 1.53) p<0.001); by the end of 2012 they were 12% lower (OR 0.88 (0.78, 0.99) p=0.05).

At the start of the evaluation period in 2009 the exclusive

breast feeding rate in EoE was 26% versus 30% in the rest of the UKNC. By the end of the evaluation period in 2012, the rate of exclusive breastfeeding in EoE was 33% versus 32% for the rest of the UKNC.

For any breastfeeding (exclusive or partial), rates in EoE increased by 0.23% (0.10, 0.36 p<0.001) compared to 0.15% (0.11, 0.20 p<0.001) in the rest of the UKNC.

Monthly rates for any breastfeeding were on average 3.0% higher (1.2, 4.9 p=0.002) in the EoE region compared to the rest of the UKNC though this difference in trends was not statistically significant (p-value for interaction between region and time = 0.26).

The rate of any breast feeding at the start of the evaluation period was 50% versus 49% for the rest of the UKNC; by the end of the evaluation period in 2012 this was 57% in EoE versus 54% for the rest of the UKNC.

NEC NEWS

10

Summary of findings (continued…..)

In the EoE region the percentage of care days where babies received mother’s milk was in decline prior to the introduction of the bundle (-0.3% per month, 95% CI (-0.6, -0.06) p=0.02). There was a significant improvement in trend from pre to post introduction (difference in trends 0.5% (0.04, 1.0) p=0.03). However similar changes were observed in the rest of the UKNC.

There was a significant step reduction in the percentage of care days where babies received PN at the point of introduction (4.5% decrease (-7.6, -1.3), p=0.007). However comparison with the UKNC showed divergent patterns of PN use post-intervention, with the UKNC showing a lower rate. There were no step or trend changes observed when we omitted 2009 data, which may be of poor quality.

There were no statistically significant changes in surgical NEC incidence which could be attributed to the care bundle. After adjusting for gestation, there was a significant reduction in surgical NEC from 2009 to 2010 (adjusted incidence rate ratio 0.52 (0.33, 0.83) p=0.006), but there was no subsequent year-on-year change, nor was there any evidence of a linear trend.

Conclusions In summary over the 4-year evaluation period a significant improvement in exclusive breastfeeding was observed in the EoE region. Although it is difficult to be certain that this can be attributed to the introduction of the care bundle as: 1) no step change was identified, and 2) any breast feeding and percentage of care days receiving mother’s milk improved to similar extent in EoE and the rest of the UKNC over the 4-year evaluation period. Additionally, the lack of significant step change is not surprising given that the care bundle was not introduced at the same point across the EoE, thus inevitably blurring identification of the commencement of any impact.

It is nonetheless the case that exclusive breast feeding can be held to represent the most stringent marker of success.

NEC NEWS

11 DATA VALIDATION STUDY RESULTS

The results depicted below show the combined validation results along with a 6 month summary depicted by a medal.

Gold = 91 - 100% Silver = 81 - 90% Bronze = 71 - 80%

UNIT Nov/Dec Jan/Feb March/April 6 month average

Bedford 100% 100% 75% Gold 92%

QE Kings Lynn 90% 90% 95% Gold 92%

Lister 75% 100% 90% Silver 88%

Hinchingbrooke 70% 100%

NR Silver 85%

Watford 80% 95% 75% Silver 83%

West Suffolk 90% 85% 65% Bronze 80%

James Paget 75% 85% 70% Bronze 77%

Basildon 60% 80% 85% Bronze 75%

Harlow 70% 90% 60% Bronze 73%

Peterborough 90% 80% 50% Bronze 73%

Addenbrooke’s 90% 65% 55% 70%

Broomfield 75% 60% 75% 70%

L&D 80% 55% 70% 68%

Norfolk and Norwich 60% 65% 80% 68%

Ipswich 65% 70% 60% 65%

Colchster 65% 55% 60% 60%

Southend 65% 50% 65% 60%

Total 76% 78% 71% 75%

NEC NEWS

12 DATA VALIDATION STUDY RESULTS

Overall percentage agreement of specific data items The table below shows the percentage of performed AXR or BC entered onto Badger: Despite the seemingly low agreement scores, the actual number of AXR and BC entered continues to improve. For example: whereas before just 2/8 AXR or BC were entered now 7/8 are entered. This still remains as a low score for accurate agreement but there is a significant

improvement in data completeness. Encourage your teams to continue working towards accurate data completion.

What is happening to the validation studies?? These have proved to be pivotal in improving data completion and accuracy in the EoE over the last two years. Validation studies will continue for another few months until Cheryl completes her study, whereupon she will let you know these will cease. Ian Long, regional neonatal data analyst will continue to send validation proforma to each champion every month. Please continue to send your completed proforma to Cheryl on 020 - 3350 8080.

Cheryl will contact you directly regarding results and actions for improvement. Cheryl will be writing this aspect of the project up for publication in the near future. Copies of the final publication will be disseminated across the region.

Sept/Oct 2012 (%) Nov/Dec 2012 (%) Jan/Feb 13 (%) March/ April 13 (%)

Discharge feed 67 81 82 73

Parenteral nutrition days

92 94 94 89 Central line days 92 94 91 86 Abdominal x-ray performed 50 56 60 41 Blood cultures performed 45 57 62 64

Nov/ Dec 12 Jan/Feb 13 March/April 13

%AXR entered 12.8% 22.4% 21.4%

%BC entered 53% 61.7% 63.6%

NEC NEWS

13

Acknowledgements and our sincere thanks also to:

The Neonatal Data Analysis Unit (NDAU) for their advice, data downloads, hosting the newsletters on their website, statistical and analytical support: Professor Neena Modi, Daniel Gray and Richard Colquhoun. Particular thanks to Shalini Santhakumaran, NDAU statistician, for her advice and statistical analysis of outcomes and findings and her patience in explaining the challenging terms.

Cheryl Battersby, for her role in improving data quality across the region through the NNC-NEC study. Jenni Gospel for her superb design of the Nutrition Pathway. Ian Long, network data analyst, for providing data for countless uses, often at short notice and always with humour. Sarah Davis, lead nurse for the network for unwavering and honest support. Ruth Ashmore, as this project was her brainchild and Brenda Allen for her practical steer! Lucy Dominy for her expertise in the communication aspects of the project. Bliss, UNICEF (BFI), Best Beginnings and SIGNEC for their support for the work and offer-ing opportunities for dissemination. Asnat Doza, Cheryl France and all the mothers who advised the project as it developed and embedded. Joanne Ferguson for her unwavering attempts to support wider dissemination and bring the NEC agenda to the forefront of research. Our partners from the industry sector, who provided training, funding and opportunities for additional improvements along the way: Ameda, Medela and Ardo Medical.

Lynne Radbone, Jenny Birch and Michele Upton would like to formally acknowledge the hard work of every champion involved in this project over the last four years, at any stage. The achievements of the region would not have been possible without your leadership and commitment. In addition, the collaboration across multi disciplinary teams, involving literally hundreds if not thousands of staff, has been pivotal to the success of this work. That success is not limited to the outcomes detailed in this newsletter: unsung achievements include our culture of embracing change, working cohesively within our own units and across the region and improving safety through consistency and reduced variation. All of these contribute towards an improved family experience and improved outcomes.

NEC NEWS

14

Compliance scores for Dec/Jan/Feb care bundle audits:

Gold status: Norfolk and Norwich, Peterborough; Bedford; Hinchingbrooke Harlow and Ipswich - all who achieved 100%!! Silver status: Lister; King’s Lynn Bronze status: Watford; Southend

Audits were received from: James Paget; West Suffolk, Chelmsford; Basildon and Addenbrooke’s.

March/April/May care bundle audits:

Gold status: Peterborough; Ipswich, Hinchingbrooke, Southend (all achieved 100%)

Silver status: Chelmsford; Lister; Norfolk and Norwich; West Suffolk, King’s Lynn; Addenbrooke’s.

Audits were received from: Bedford; Basildon, James Paget.

These scores are based on every unit achieving full compliance with every aspect of the bundle, including supporting mothers to express within 6 hours. Increasing compliance

month on month, a brilliant achievement. Let’s use the hand expressing and breast massage posters to further this improvement.

This is the final edition of NEC News.

If you require further information, please contact Sarah Davis on sarahdavis5@nhs.net

All or None scores across the region were an excellent 74%!!

All or None scores across the region were: 86% Simply brilliant!