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1 Storyboard submission Follow the detailed instructions in this template for writing a description of your storyboard. Type your information in each section below and save this completed storyboard document as a Microsoft Word file. Please spell check your storyboard before submission as it will be published on the NHS Wales Awards website. Please note: The storyboard should be between words maximum (including references but excluding headings, images or graphs) Submit your storyboard using the online submission system at by Friday 25 January Dr Orhan Uzun, Claire Logan, Wendy Williams, Nerys Thomas, David Tucker, Rosemary Johnson. Storyboard submission 1. Storyboard Title Reducing perinatal mortality from congenital heart disease 2. Brief Outline of Context (Where this improvement work was done; what sort of unit/department; what staff/client groups were involved) Paediatric Cardiology, Radiology Departments and Fetal Cardiology Unit work together to provide an all-wales tertiary service at University Hospital of Wales for a population of 2.5 million. -Paediatric and fetal cardiologist, Specialist paediatric cardiac liaison nurses, superintendent sonographer were involved in providing education and training to sonographers, radiologists, obstetricians and midwives involved in the care of pregnant women in all Welsh Hospitals.

2 pregnant women use the service every year in Wales. 3. Brief Outline of Problem (Statement of problem; how they set out to tackle it; how it affected patient/client care) -Congenital Anomalies are the most common cause of morbidity and mortality in term babies. Heart Defects constitute the most frequent cause of congenital anomalies. -In Wales detection of congenital heart defects was below the UK average which was resulting in excess morbidity and mortality (See Figure 1 and Graph 1 comparing Regions in the UK). 4. Assessment of Problem and Analysis of its Causes (Quantified problem; staff involvement; assessment of the cause of problem; solutions/changes needed to make improvements) -Care was not standardised and there was wide variation in capability resulting in inequality and a postcode lottery for specialist treatment. -Poor screening standards and lack of knowledge and expertise in heart anomaly detection in peripheral hospitals was resulting in health inequalities and disadvantaging patients for pregnancy care, particularly for those most at risk from deprived areas outside Cardiff area (Figure 3). This resulted in higher perinatal morbidity and mortality in district general hospitals. -Patients were waiting as long as 4 weeks to see a specialist but now they can have immediate result from their local hospital whether there is an abnormality of not. -There was an urgent need to standardise care through teaching training and education. 5. Strategy for Change (How the proposed change was implemented; clear client or staff group described; explain how they disseminated the results of the analysis and plans for change to the groups involved with/affected by the planned change; include a timetable for change) - A meeting was held with stakeholders (obstetricians, sonographers, screening midwives and radiologists) in all district general hospitals and discuss the severity of the problem and agreed on mass training and teaching program to achieve same standards of care in all Welsh Hospitals. - A protocol for safe and effective heart anomaly screening to include outflow tract views was devised with the Paediatric Fetal Cardiologists and implemented by the team. - Standards were agreed and set.

3 - Local champions for fetal cardiac anomaly screening were identified for each unit and a comprehensive training package and best practice guidelines were drawn up. -Letters were sent to all District General Hospitals asking for them to set aside an in house theoretical and hands on training day for their staff. -Charity funds for continuing education were identified. -The Paediatric Fetal Cardiologist and Training Champion undertook in house practical course and training, annual national meeting was organised. -Telemedicine was utilised to provide continuing education. -A local heart anomaly screening service was developed and established using existing resources 6. Measurement of Improvement (Details of how the effects of the planned changes were measured) -A balanced set of measures were established. -Process measures included: Audit of safety and efficacy of training program Numbers of healthcare professionals trained Adherance to standards Outpatient attendance -Oucome measures: Fetal cardiac anomally detection rates Mortality and morbidity -Balancing measures Semi-structured and qualitative interviews with the local champions, and screening sonographers, midwives and obstetricians as well as pregnant women provided extremely positive feedback and satisfaction. 7. Effects of Changes (Statement of the effects of the change; how far these changes resolve the problem that triggered the work; how this improved patient/client care; the problems encountered with the process of changes or with the changes) -Results of the audit were presented to the UHB, at the Welsh Paediatric Society Meeting, Specialist Health Commission of Wales Annual Meeting and our success was made public at Department of Health Website at Congenital Cardiac Anomaly Portal (Figure 2 and Graph 2 show Antenatal care in Wales moved above national average as the best among all nations in the UK after intensive training and Figure 3 compares regions in Wales according to postcode).

4 -Positive medical staff feedback was obtained. -Perinatal morbidity and mortality from Heart Defects was substantially reduced (HLHS survival increase from 30% to over 75%) due to pick up rate increasing from below 10% to over National Average for all abnormalities and to over 90% for life threatening Hypoplastic Left Heart (CARIS DATA Swansea, Mr David Tucker s Report 2012). -Named Local Champions and Screening Midwife ensures continuity of care. -Freed up approximately 4 hours Fetal Cardiologist s time every week to allow him to look after a greater number of sicker patients. -Immediate availability of results allowed prompt treatment to be started locally using standardised guideline hence enhancing local expertise and boosting their confidence further. - Family centered process evolved which minimized disruption to family life and prevented loss of work and earning - Outflow tract view became implemented in Wales first among all UK nations hence Wales NHS complied with NICE guidelines fully. -This service standardised the care, reduced postcode inequality in Wales (Compare Figure 3 and Figure 4) and helped reduce the carbon footprint by allowing screening, diagnosis and treatment to be done at local hospital. - Pregnant women stayed within their environment rather than travelling to UHW thus reducing unnecessary travel. -Local delivery of care enabled us to promptly identify a dozen of very sick pregnant women with poor fetal health every year allowing the local team to initiate immediate response and appropriate treatment. -Audit results identified improving standards every year and any deviation from the goal set for safe care was promptly addressed with intense training of the staff concerned. -Substantial cost saving to the UHB as there is no ongoing consumable expenditure and outpatient attendance from DGHs was reduced by 50% (from 500 referrals to 250 patients each year produced net saving of 25K per year+loss of work and earning of patient by avoiding travel to Cardiff) 8. Lessons Learnt (Statement of lessons learnt from the work; what would be done differently next time) -Introducing and implementing Local Heart Anomaly Screening Service including outflow tract view in Peripheral Welsh Hospitals had been a major undertaking and it was

5 the first in the UK. -However with the support and tireless work of the whole team a safe, efficient and effective and safe service implemented. -We would allow more time for the service to develop slower with one to one engagement of sonographers and local champions. -Allow for changes to take place gradually but continuously as the local confidence level grow rather than implementing it at once 9. Message for Others (Statement of the main message they would like to convey to others, based on the experience described) -A successful Fetal Cardiology Service at each District General Hospital could be spread throughout the UK. -In fact England took our achievement as an example and started a similar teaching and training program to improve standards in its District General Hospitals around the country References 1. Caris report on Congenital Heart Anomalies Swansea Wales. id= CCAD Portal: t/antenatal%20diagnosis?opendocument 3. Nice guidelines for antenatal care pdf 4. All wales perinatal survey. awps_annual_report_2_1.pdf 5. Royal College of Obstetrician Guidilines BCCA Fetal Cardiology Standards. ards_final_version_march_2010.pdf 7. ISUOG Guidelines.

6 Figures and Tables (Table 1 compares antenatal detection rates in the UK). Figure 1. Before training started Wales among the regions below National Average (Blue ones). Darker the red is better the results are hence there were 3 centres above National average.

7 Figure 2. Wales moved to top best center above the National average as a result of our training program. Graph 1. Before training started Wales among the regions below National Average (Blue ones). Darker the red is better the results are hence there were 3 centres above National average.

8 Graph 2. Wales moved to top best center above the National average as a result of our training program.

9 Figure 3. Regional differences in antenatal detection of heart defects in Wales and in the rest of UK.

10 Figure 4. Much improved regional differences in antenatal detection of heart defects in Wales and in the rest of UK England 31% 33% 35% improving N Ireland 36% 32% no data yet Scotland 29% 23% 36% improving Wales 34% 42% 52% improving UK 31% 33% 35% improving Table1. Comparison of countries for National Detection Rates for Congenital Heart Defects in the UK

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