Report on Population based National Screening Programmes in Abertawe Bro Morgannwg University Health Board

Transcription

1 Report on Population based National Screening Programmes in Abertawe Bro Morgannwg Author: Kimberley Cann, Specialty Registrar in Public Health, Dr Sikha de Souza, Locum Consultant and Dr Sharon Hillier, Deputy Director, Screening Division Date: April 2014 Version: 1 Purpose of Document: To report on population based national screening programmes in Abertawe Bro Morgannwg University (AMBU) Health Board managed by Screening Division, Public Health Wales. This document reports the uptake and coverage of the programmes for the period 1 st April 2012 to 31 st March The report provides an update on the screening programmes across Wales and any specific issues for Abertawe Bro Morgannwg. Sponsoring Executive Director: Dr Sara Hayes, Executive Director of Public Health, Abertawe Bro Morgannwg University Health Board

2 Contents Executive Summary Purpose Background Financial Update Reducing inequity in screening uptake and coverage Screening Engagement Activity Breast Cancer Screening Cervical Screening Bowel Screening Newborn Hearing Screening Antenatal Screening Wales Abdominal Aortic Aneurysm Screening Project (WAAASP) Newborn Bloodspot Screening Wales Project Screening Division Contacts References Glossary Uptake is the proportion of people routinely invited for screening for who a screening test results is recorded within the same invitation episode. Uptake is an important measure of the acceptability of a screening programme. There are minimum uptake standards and targets set of each of the programmes. Coverage is the proportion of people resident and eligible at a particular point in time who have been screened at least once in a defined time period (dependent on the screening interval of the different programmes). Date: April 2014 Version:1 Page: 2 of 25

3 Executive Summary Screening Division of Public Health Wales manages the five population based national screening programmes in Wales (Breast Test Wales, Cervical Screening Wales, Bowel Screening Wales, Newborn Hearing Screening Wales and Wales Abdominal Aortic Aneurysm Screening Programme), and hosts the Antenatal Screening Clinical Network (Antenatal Screening Wales). Screening division has a Long Term Agreement (LTA) with the Health Board and also purchases a number of consultant sessions to support delivery of Breast, Cervical and Bowel screening. Minimum targets for uptake/coverage are set for each of the programmes: The minimum standard for breast screening uptake is 70%, and the target is 80%. For the year the minimum standard is reached in Wales (71.5%) and in ABMU (73.9%) The target for cervical screening coverage is 80%. For the year this was not met in Wales (76.2%) or in ABMU (76.0%) The target for bowel screening uptake is 60%. For the year this was not met in Wales (48.2%) or in ABMU (48.9%) Newborn Hearing screening uptake was 99.5% in Wales and in ABMU for the year , exceeding the target of 95% The target for AAA screening uptake is 80%. The programme has been running for less than one year so annual figures and details by area are not yet available. Changes in the national screening programmes include: Introduction of the Wales Aortic Aneurysm Screening Programme in May Introduction of digital mammography across Wales Change in age range and frequency of cervical screening from September 2013 Implementation of a safe and sustainable Newborn Bloodspot Screening programme for Wales The Screening Engagement Team works across the national programmes to engage with the public about screening and facilitate informed choice for the population of Wales. Inequities in uptake have been demonstrated across Wales, with uptake of the cancer screening programmes being lower in more deprived areas. These are being addressed at a national level but require local input and joint working with local teams. Date: April 2014 Version:1 Page: 3 of 25

4 1 Purpose The purpose of this report is to inform the Health Board of the aims of the national screening programmes undertaken for their population and to update them on the uptake and coverage for their population. The report also identifies any issues that are present for the screening programmes across Wales and any specific issues for Abertawe Bro Morgannwg. 2 Background Screening is a process of identifying apparently healthy people who may be at increased risk of a disease or condition. They can then be offered information, further tests and appropriate treatment to reduce their risk and/or any complications arising from the disease or condition. 1 The UK National Screening Committee (UK NSC) advises Ministers and the NHS in the four UK countries about all aspects of screening. 2 The Wales Screening Committee takes advice from the UK NSC and the Welsh Government takes the decision whether the screening policy is implemented for the population of Wales. Screening Division, Public Health Wales is charged with managing the five population based national screening programmes across Wales; Breast Test Wales, Cervical Screening Wales, Bowel Screening Wales, Newborn Hearing Screening Wales and Wales Abdominal Aortic Aneurysm Screening Programme. The Division also hosts the Antenatal Screening Clinical Network (Antenatal Screening Wales). Screening Division is also in final stages of the project to implement a safe and sustainable and Newborn Bloodspot Screening programme for Wales. 3 Financial Update The Long Term Agreement funding for Abertawe Bro Morgannwg for 2013/14 is as follows: Bowel Screening 609k; Cervical Screening 1,743k; Newborn Hearing Screening 120k. The division also purchases a number of consultant sessions to support the delivery of the Breast, Cervical and Bowel Screening programmes. This is in order of 20 consultant sessions a week. Breast biopsies are funded on an activity basis. Date: April 2014 Version:1 Page: 4 of 25

5 4 Reducing inequity in screening uptake and coverage There is inequity in screening uptake for the cancer screening programmes, with a lower uptake in more deprived groups. Reducing inequity is a priority for screening division. A review of the literature has highlighted the importance of clear, consistent messages, delivered in a way that is appropriate to the audience. A set of key messages has been developed for each of the adult screening programmes. These have been based on the template used in the Making Every Contact Counts initiative, where information is built up in layers. The key messages are balanced and cover the information that participants need to enable them to make an informed choice and information they want, based on qualitative work undertaken by the Screening Engagement Team. The key messages also cover preventive messages and information about symptoms to look out for. The aim is to enable and encourage people outside Screening Division to deliver screening messages using the key messages. We recognise that practitioners working with specific communities or groups will know how best to deliver messages to that group and will already have built up relationships and trust. This will enable more integration of screening within general public health messages. Workshops are planned for early 2014 to engage with partners in health, community groups, third sector and wider stakeholders, around screening and tackling inequity. The first event is in West Wales and this will have the launch of the key messages and the event is jointly organised with screening and the Local Public Health Teams along with input from Communities First and the third sector, and it is hoped that this approach can be mirrored across Wales. 5 Screening Engagement Activity The Screening Engagement team in Screening Division works across the national programmes to engage with the public about screening and facilitate informed decision making for the population of Wales. The work of the team includes engaging with members of the public through information sessions, community courses, health fairs, staffed displays and community information dissemination. Work undertaken this year has included: supporting national campaigns (European Cervical Cancer Prevention, Jo s Trust Cervical Cancer Awareness Week and Bowel Cancer Awareness Month); Date: April 2014 Version:1 Page: 5 of 25

6 launch of the Wales Abdominal Aortic Aneurysm Screening Programme in May; delivering the Volunteer Pilot Project. The volunteers are working within certain communities and disseminating information in relation to screening; development of an All-Wales Public Information Strategy; review and recruitment to the Screening Engagement Virtual Reading Panel to ensure the opinions of the public are considered in the information produced by screening,; undertaking an easy read information project; transgender awareness project, learning disability project; Gypsy traveller project. The team has been exploring new ways of communicating with the public particularly using electronic communications. A Screening Engagement Web Specialist has been employed to develop and manage the intra- and internet sites and look into the use of social media and other web based technology to support future communication and engagement with the public and professionals. A large piece of work carried out by the team in July 2013 was the Screening for Life campaign. The aim of the campaign was to raise the awareness of the importance of the national screening programmes in Wales and to encourage areas of low uptake to have a better understanding of the importance of screening. Screening for Life ran throughout July 2013 with a specific focus each week including women s health; equality and diversity and men s health. Train the trainers workshops were held across Wales to equip voluntary sector, charities, public health teams and community first staff with the up to date information on screening to enable consistent messages to be delivered to the eligible population. Public information packs about the campaign were sent to stakeholders either electronically or hard copy. Screening for Life is planned to be an annual campaign, and planning is underway for July 2014, including collaboration with Community Pharmacy Wales and Wales Centre for Pharmacy Professional Education with a focus on bowel screening. Date: April 2014 Version:1 Page: 6 of 25

7 6 Breast Cancer Screening 6.1 Epidemiology Breast Cancer is the most common cancer in the UK despite the fact that it is rare in men. The lifetime risk of developing breast cancer in women in the UK is 1 in 9. 3 Breast cancer is more common in women aged over 50 and the risk increases with age. 4 There were 2,362 new cases of breast cancer in women in Wales in Since 2007 the European age-standardised rate (EASR) have varied between 123 and 130 new cases per 100,000 women per year. 6 There were 594 deaths due to breast cancer in Wales in Aim of Programme: Breast Test Wales (BTW) The aim of the programme is to reduce mortality from breast cancer by detecting breast cancer early. 6.3 Method Eligible women aged years who are resident in Wales are invited for breast screening every three years. Women over the age of 70 years can self refer to be screened. The programme invites women from General Practitioner practices (or geographical areas) over a three year cycle. The women mostly attend Breast Test Wales mobile units and have a two view screening mammogram of their breasts. The roll out of mobiles that are wheelchair accessible is complete across Wales with disability access available in each region. Women are sent their results by post and if indicated women are called back for assessment to their nearest breast screening centre. Further tests are undertaken including ultrasound and biopsy and when breast cancer is diagnosed the woman is referred for treatment. 6.4 Engagement Activities BTW has recently launched an updated website with a refreshed look and additional information about breast screening. There are frequently asked questions and links to resources that include NHS Direct Wales, Breast Cancer Care, and other screening programmes offered in Wales. The web site is bilingual and has attained the Crystal quality mark approved by the plain English campaign. In England the leaflet NHS Breast Screening helping you to decide is in use which has a focus on providing clear information to enable women to Date: April 2014 Version:1 Page: 7 of 25

8 make an informed choice about attending for screening. BTW is currently exploring the use of this leaflet in Wales. 6.5 Target The minimum uptake standard is 70% of invited women attending for screening, while the target is 80%. 6.6 Progress Overall the uptake for breast screening for the period April 2012 to March 2013 for the population of ABMU Health Board was 73.9% which met the minimum uptake standard. The uptake is similar for this period to the previous year and slightly higher than that for all Wales in (71.5%). The highest uptake was seen in Neath Port Talbot with 76.3% which compares to 51.3% the previous year. However, it is important to remember that breast screening is carried out on a three year round. A one year period is sometimes unrepresentative as only a proportion of women may be invited from a defined geographical area. Table 1: Uptake of Breast Screening of eligible women aged years for Wales; Abertawe Bro Morgannwg University HB and local authority areas for period 1 April March Data source: Screening Division. Population All Wales ABMU HB Bridgend Neath Port Talbot Swansea Percentage 71.5% 73.9% 74.2% 76.3% 71.7% Number eligible women tested Change from ,439 21,205 7,506 6,240 7, % -2.2% -0.5% +25.0% -5.3% 6.7 Current All-Wales Issues Digital mammography Following almost two years of significant technological change, BTW has become the first fully digital breast screening programme in the United Kingdom. During digital implementation, activity had to be slowed down, but it is improving now and has increased by 28% since October The programme is now focusing on delivering a 36 month round length as well as continuing to improve on its excellent cancer detection rates. Current predictions are that the round length will start to recover in the third quarter of However, this is dependent on maintaining current activity levels and ensuring the necessary capacity is in place to support Date: April 2014 Version:1 Page: 8 of 25

9 reporting, assessment and ability of treatment services to manage women diagnosed Recruitment One of the main challenges BTW is facing is recruiting appropriate consultant medical staff as there is a shortage of breast radiologists across the UK. BTW has responded to this by developing a modernised workforce of advanced radiography practitioners to assist in the reporting and assessment pathway, and investing in training of SAS grade doctors as breast clinicians. This has provided significant support to the service; however the ability to recruit consultant radiologists and surgeons still remains a significant rate limiting step in parts of the service. BTW has an aging workforce with numerous retirements planned over the next two rounds of screening. Maintaining a workforce with adequate skills and capacity is a key objective Picture Archiving and Communication System (PACS) The current Picture Archiving and Communication System (PACS) used by BTW requires a significant upgrade in the near future. This presents a significant service delivery risk and will need to be closely project managed to ensure that the impact on key deliverables such as report turnaround time are not affected. 6.8 Current local issues West Wales has faced particular difficulties in recruiting suitably trained radiologists to fill longstanding vacancy; recent steps taken to support the service include additional breast clinician sessions and a further recruitment drive. BTW is also in talks with ABMU Health Board regarding the joint appointments. The main challenge facing West Wales is in delivering short waits for ladies requiring assessment. The probable upcoming retirements of the clinical lead at the Swansea Centre will further challenge the organisations workforce issues. Date: April 2014 Version:1 Page: 9 of 25

10 7 Cervical Screening 7.1 Epidemiology Cervical cancer is the 13 th most common cancer in Wales, and the incidence in Wales is decreasing. 4,6 In 2011, there were 134 new cases and 60 deaths from cervical cancer in Wales compared to 164 new cases and 92 deaths in Aim of Programme: Cervical Screening Wales The aim of the cervical screening programme is to reduce the incidence of, and morbidity and mortality from, invasive cervical cancer. 7.3 Method Eligible women are sent an invitation letter to attend for a cervical screening test. Women can attend their General Practice or local Sexual Health Clinic for a smear to be taken by a smear taker. The aim of the test is to detect early cell changes that may lead to cancer. The results are sent back to the women by post and if indicated the woman may be asked to attend for a repeat smear, or referred to a colposcopy clinic for further investigation. Please note: Previous to September 2013 women aged year were invited every 3 years and the data presented covers this period. From the 1 st September 2013 women aged years are invited every three years and those aged are invited every five years. This change was implemented following an announcement by the Health Minister in February 2013, based on recommendation from the UK National Screening Committee and the Wales Screening Committee. 7.4 Engagement Activities A focus this year has been promoting the change in age range with the public and health professionals and ensuring that information is updated. CSW will be shortly launching an updated website with a refreshed look and additional information about cervical screening. 7.5 Target The target standard is that 80% of eligible women aged 20 to 64 years (now 25-64) are screened. Date: April 2014 Version:1 Page: 10 of 25

11 7.6 Progress For the group aged years the coverage was 76.0% for ABMU Health Board in April 2012-March 2013, which did not reach the target. This is similar to that for all Wales (76.2%). The coverage changed little from the previous year for most Local Authorities and for ABMU overall (76.2%). For the group aged years the coverage was 79.0% for ABMU Health Board in April 2012-March 2013, which is similar to that for all Wales (79.3%). Table 2: Coverage of Cervical Screening of eligible women aged 20 to 64 years for Wales, Abertawe Bro Morgannwg, and local authority areas for period 1 April March Data source: Screening Division. Population All Wales ABMU HB Bridgend Neath Port Talbot Swansea Percentage 76.2% 76.0% 76.9% 77.3% 74.7% Number eligible women tested Change from , ,430 28,874 29,242 49, % -0.2% +0.3% -0.6% -0.4% 7.7 Current All-Wales Issues Cervical Screening Wales Modernisation Project The Cervical Screening Wales Modernisation Project was established in April 2013 to manage the many changes facing CSW over the next few years, including: Change in the age range and frequency of invitation Implementation of the updated Achievable standards, Benchmarks for reporting and Criteria for evaluating cervical cytology (ABC3) laboratory document issued in January 2013 Implementation of testing for human papilloma virus (HPV) Replacement of the NHAIS information management system used by the Cervical Screening Administration Departments, and Implementation of an improved colposcopy imaging system In the first few months of the project, the project team concentrated on the requirement to change the age range and frequency with which women were invited for screening by the programme. This change was successfully brought in on 1 st September 2013, and women are now invited for the first time at age 25, then every three years until age 50 and five yearly thereafter. This brings Wales in line with the best evidence on effectiveness of cervical screening. Date: April 2014 Version:1 Page: 11 of 25

12 7.7.2 Human Papilloma Virus (HPV) testing Cervical cancer is caused by infection with the HPV virus which is a common virus, with many subtypes. The subtypes which cause cervical cancer are called high risk subtypes, and in recent years commercial tests have been developed which detect the presence of high risk HPV subtypes in cervical samples. There is increasing evidence that the use of the HPV test within an organised screening programme is more effective in preventing cervical cancer than cervical cytology alone. HPV testing is not part of the CSW programme currently and there are plans to implement it in stages. The first step will be to implement Test of Cure. Samples from women having early repeat smears following colposcopy for abnormal smears will be examined with cytology and HPV test six months later. They will be returned to normal recall if cytology and HPV test are both negative. HPV Test of Cure will allow us to distinguish much more quickly between the minority of women who need more colposcopy follow up and treatment, and the majority of women who can be returned to normal. We aim to introduce HPV test of cure during Once test of cure has been implemented, we do not plan to expand HPV testing further for the next twelve months. All planning beyond this point may be affected by changing evidence or changes in national screening policy, but currently we are planning to introduce HPV triage of low grade abnormalities next. All samples would initially be tested with cytology followed by HPV testing of samples with low grade cytological abnormality. Immediate colposcopy referral would be indicated if the sample was HPV positive and return to normal recall if it was HPV negative. The implementation of HPV testing as a primary screening test is currently under assessment by the NHSCSP at Sentinel Sites across England. 8 Its introduction is subject to consideration by the UK NSC. Introduction in Wales would require a policy change from Welsh Government and careful planning in light of the impact on laboratory workloads. There are currently no plans for the implementation of HPV primary testing in the cervical screening programme in Wales. 7.8 Current local issues Despite notification of problems to health boards on the provision of access to Colposcopy under General Anaesthetic, this remains an area for concern across Wales. Quality Assessment visits are an integral and essential part of the CSW Quality Management Programme. The QA visit strategy has been reassessed by CSW and a schedule of visits is planned to start in Bryan Rose who was the CSW Head of Programme retired in April 2014 and Rachel Jones has been appointed to this role. Rachel s previous position was Directorate Manager for Surgery, Trauma and Orthopaedics in Cwm Taf and we are delighted that she has joined our team. Date: April 2014 Version:1 Page: 12 of 25

13 8 Bowel Screening 8.1 Epidemiology In 2012 Bowel Cancer was the most common cancer in Wales, which is the first time that this has been recorded by the Welsh Cancer Intelligence and Surveillance Unit. 5 There were 1,405 new cases of bowel cancer in men and 1,039 new cases in women in Wales in Between 2007 and 2011 the European age-standardised rate in Wales varied between 36 and 41 cases per 100,000 men per year and between 24 and 27 cases per 100,000 women per year. 6 In 2012, there were 912 deaths from bowel cancer Aim of Programme: Bowel Screening Wales The aim of the programme is to reduce mortality from bowel cancer by 15% in the population invited for screening by Method Currently men and women resident in Wales and aged between 60 and 74 are invited for bowel screening every two years. A faecal occult blood (FOB) test kit is sent to them at their home and the participant completes the kit and returns it by post to a central laboratory. If the test is positive participants are referred for assessment and offered colonoscopy if considered fit for the procedure. Bowel Screening Wales is responsible for the participant up to the point of cancer diagnosis. 8.4 Engagement Activities The website for Bowel Screening Wales is being updated to include more content for participants including frequently asked questions and links to external sources of information. 8.5 Target The uptake target is 60% of the eligible population who are invited to participate have a validated positive or negative FOB test kit result. Since these figures were produced, the definition has been revised to include all participants who have returned a used test kit, including spoiled kits. 8.6 Progress The uptake for April 2012-March 2013 was lower than the target of 60% for ABMU Health Board and for all individual Local Authorities. The uptake Date: April 2014 Version:1 Page: 13 of 25

14 has also decreased slightly from the previous year for all individual Local Authorities and for ABMU Health Board overall. Table 3: Uptake of Bowel Screening of eligible men and women aged years for Wales, Abertawe Bro Morgannwg University (ABMU) Health Board, and local authority areas for period 1 April March Data source: Screening Division. Population All Wales ABMU HB Bridgend Neath Port Talbot Swansea Percentage 48.2% 48.9% 50.8% 49.0% 47.8% Number eligible men and women tested Change from ,583 21,450 6,061 6,053 9, % -3.4% -2.5% -3.6% -3.8% 7.9 Current All-Wales Issues Uptake A project team has been established to develop, implement and evaluate strategies to improve uptake. Work is focused on three levels of activity: strategic work includes the development of a framework to address inequity; operational strategies include the development of key messages and an introductory letter and will need to be piloted and evaluated; routine programme activities include the development of the participant champion role and collaboration between Specialist Screening Practioner s and the Screening Engagement Team. The uptake figures have recently shown an improvement and the aim is for this to be sustained in the future Waiting times for colonoscopy There are considerable challenges relating to capacity in endoscopy units in Wales. Waiting times for screening colonoscopy have always required active management, but they are currently longer than the 2 week standard in many Health Boards. A service improvement plan has been agreed by the Programme Board and will be implemented over the next few months Network MDT/National Referral Centre A Network Multidisciplinary Team and National Referral Centre for treatment of complex colorectal polyps have been set up. The lack of good quality images to review at Network MDT meetings has meant that more people have attended the National Referral Centre (NRC) for assessment Date: April 2014 Version:1 Page: 14 of 25

15 than would otherwise have been necessary. Money has been allocated to purchase and install video and image capture equipment in all local assessment centres. Issues with capacity and availability of clinicians have resulted in participants waiting longer than anticipated for procedures at the NRC. Standards and Key Performance Indicators have been agreed and a performance management framework developed to ensure appropriate monitoring and quality assurance of the NRC service. Availability of diagnostic tests in Local Assessment Centres have also contributed to delay and will be discussed by the Steering Board in November. The current pilot is limited by the fact that there is a single clinician undertaking procedures at the NRC which is not sustainable. A new consultant has recently been appointed and will be trained to undertake complex polypectomy. An interim plan has been developed and implemented Current local issues Waiting times for screening colonoscopy remain a challenge and this is due to lack of cover, availability and cancelled lists. A plan to address this issue is under discussion. Date: April 2014 Version:1 Page: 15 of 25

16 9 Newborn Hearing Screening 9.1 Epidemiology Since the introduction of universal newborn hearing screening in 2003, the prevalence of permanent significant bilateral hearing loss (defined as greater than 40dBnHL) has been found to be 1.3 per 1000 babies screened in Wales Aim of Programme: Newborn Hearing Screening Wales The aim of the Newborn Hearing Screening Wales (NBHSW) Programme is to identify babies with significant hearing loss, which is of sufficient severity to cause or potentially cause a disability without the introduction of habilitation in infancy. 9.3 Method NBHSW receives notification of births through central registration. Screening is undertaken by screeners employed by the screening programme. Babies who have been in special or neonatal intensive care are high risk and receive a different test. Babies referred for assessment from the screening programme are seen by audiologists with expertise in testing very young babies in audiology departments throughout Wales. Babies diagnosed as having significant hearing loss receive support from local multidisciplinary teams which include audiologists and paediatricians. 9.4 Engagement Activities As uptake is consistently over 99% for this programme the engagement team focus more on other areas, particularly the adult programmes. 9.5 Target The percentage of eligible babies (born to mothers who are resident in Wales) who enter the screening programme has a minimum standard of at least 95%. 9.6 Progress The coverage rates for Newborn Hearing during April 2012 March 2013 are well above the minimum rate for all Local Authorities and was 99.5% for ABMU Health Board overall. This is a similar achievement to that for all Wales (99.5%) and for the previous year. Date: April 2014 Version:1 Page: 16 of 25

17 Table 4: Coverage of Newborn Hearing of eligible babies for Wales, Abertawe Bro Morgannwg University (ABMU) Health Board, and local authority areas for period 1 April March Data source: Screening Division. Population All Wales ABMU HB Bridgend Neath Port Talbot Swansea Percentage 99.5% 99.5% 99.4% 99.8% 99.3% Number eligible babies tested Change from ,684 5,365 1,472 1,442 2, % +0.2% -0.3% +1.0% -0.1% 9.7 Current All-Wales Issues The Professional Leads (PLs) for NBHSW are responsible for the medical aspects of habilitation of babies referred from the screen and for the coordination of multi-disciplinary support. There are currently eight PLs in Wales, with one providing temporary cover for a vacant post in addition to her own duties. Within the next 5-10 years, many will have reached or be nearing retirement age. To ensure that babies continue to receive a high standard of care from appropriately trained and skilled doctors, Health Boards need to make plans for succession. A new Quality Assurance (QA) advisor for NBHSW has been appointed; Dr. Ann MacKinnon is a Paediatrician specialising in Audiology based in Tayside in Scotland. The QA process for 2014 is being finalised and will involve a benchmarking exercise of services offered by Health Board staff for babies referred from the screen and for those found to have a significant hearing loss. This will run in tandem with the audit of services against the Wales Quality Standards for Paediatric Audiology. 9.8 Current local issues The decision with regard to service configuration of Obstetric-led maternity care and neonatal care in ABMU, Cardiff and Vale, Cwm Taf and Aneurin Bevan Health Boards will impact on delivery of NBHSW. Screeners are located in all hospitals currently providing obstetric and neonatal services but do not provide weekend screening in all sites. Screeners will need to be accommodated in the hospitals with neonatal and obstetric led services and consideration given to weekend screening arrangements to maintain current standard of 75% babies screened in first week of life. Date: April 2014 Version:1 Page: 17 of 25

18 10 Antenatal Screening 10.1 Epidemiology In 2012 there were 35,238 live births to women resident in Wales. 10 As antenatal screening covers several conditions detailing the epidemiology of all of these is not within the scope of this paper. Please refer to the National Screening Committee website for further details Aim of Programme: Antenatal Screening Wales Antenatal screening is undertaken to detect defined serious conditions present in either the mother or baby that are likely to have an adverse effect on the health of either, and for which an effective intervention is available and warranted. For some conditions, preventive treatment is available during the antenatal period or after delivery to improve the baby s health. For others, the condition can be identified during the antenatal period but no preventive treatment is available. With high quality counselling women can make an informed choice about whether they wish to continue the pregnancy and appropriate support, depending on the ultimate choice, can be arranged Method Antenatal Screening is undertaken as part of routine antenatal care delivered by the health boards. Although, Antenatal Screening Wales hosts the Antenatal Screening Clinical Network and is responsible for establishing policies standards and protocols, it is the Health Boards that have the responsibility for delivering the service. There are published policy, standards and protocols to support the provision of antenatal screening in Wales Engagement Activities The Screening Engagement team undertook a service-user review of the Screening for Down s syndrome in pregnancy leaflet. Parent and toddler groups were identified to participate in the review Target All women resident in Wales should be offered the following antenatal screening in every pregnancy; human immunodeficiency virus, hepatitis B, syphilis; rubella susceptibility; blood group and antibodies, Down s Date: April 2014 Version:1 Page: 18 of 25

19 syndrome; early pregnancy ultrasound scan (dating) and fetal anomaly ultrasound scan. 13 Antenatal screening for sickle cell and thalassaemia should be offered to all pregnant women at an increase risk of having a child affected by a sickle cell disorder or thalassaemia major. There are no update targets for the programme. All Women who have a higher chance Down s syndrome screening results should be offered a diagnostic test (amniocentesis or chorionic villus sampling) appropriate to her gestation Progress The precise numbers of antenatal screening tests are difficult to ascertain as the tests are often not recorded by the laboratory as antenatal screening programme tests. Also the data is often collected manually and there may be some data quality issues. As can be seen from Table 5, uptake of the screening tests for HIV, Syphilis, Hepatitis B using Rubella uptake as a denominator is high with the average for ABMU being over 99% for all of these tests. The assumption is that the numbers of rubella uptake indicate the numbers of eligible women for antenatal screening. A high uptake is important for these tests as it is clear about the benefit to the woman and baby of knowing the results of the tests. The uptake rate is not informative for the sickle cell and thalassaemia screening test as it is only to be offered to women who are at an increased risk of having a child affected by a sickle cell disorder of thalassaemia major. For Down s syndrome testing it is also not appropriate to have a target set as it is an individual choice to have a screening test as the anticipated outcomes of screening is for the woman who has a pregnancy affected by Down s syndrome to have reproductive choices. Date: April 2014 Version:1 Page: 19 of 25

20 Table 5: Uptake of Antenatal Screening Tests by pregnant women resident in Wales, Abertawe Bro Morgannwg University (ABMU) Health Board, and hospital areas for period 1 st July 2012 to 30 th June Data source: Antenatal Screening Wales. Population All Wales ABMU HB Rubella (denominator for other tests, percentage uptake 100% by default) Number tested Human Immunodeficiency Virus (HIV) Percentage 99% 100% Number tested Hepatitis B Percentage 99% 99% Number tested Syphilis Percentage 99% 100% Number tested Sickle cell and Thalassemia screening (offered if woman meets criteria) Percentage 21% 26% Number tested Down s Syndrome (only includes NHS screening test) Percentage 57% 73% Number tested Current All-Wales Issues As requested by Welsh Government; Health Boards, Welsh Health Specialist Services Committee and Public Health Wales are working together to introduce combined antenatal screening for Down s syndrome for women who present for care in early pregnancy in Wales. Betsi Cadwaladr Health Board have confirmed that they will start screening in April 2014 and Hywel Dda in September To avoid creating inequity of service provision Welsh Government has requested implementation timelines from the other Health Boards. Education is being rolled out by the ASW Education Facilitator within each Health Board with midwives, sonographers and obstetricians involved in combined screening invited. The planned programme is due to finish at the end of April 2014.Work is being undertaken with the all Wales Down s syndrome screening laboratory to ensure that they are ready to implement and that the work coming into the laboratory is managed in a manner that will not cause difficulties. Date: April 2014 Version:1 Page: 20 of 25

21 11 Wales Abdominal Aortic Aneurysm Screening Project (WAAASP) 11.1 Epidemiology Ruptured aneurysms are a small but significant cause of death in the UK - ruptured Abdominal Aortic Aneurysm (AAA) is responsible for 2.1 per cent of all deaths in men aged over 65. In Wales in 2010, there were 228 deaths from AAA in men, 95 per cent of which were in men aged over 65. Around half the deaths attributed to ruptured AAA take place before the patient reaches hospital. Overall mortality from ruptured AAA is around 85 per cent Aim of programme: WAASP The aim of the screening programme is to reduce the number of deaths from a ruptured AAA by half in the men invited to be screened, by Method The Wales Abdominal Aortic Aneurysm Screening Programme (WAAASP) was launched on 1st May year old men resident in Wales are invited for a one-off ultrasound scan of their abdominal aorta to check whether they have an AAA. Ultrasound scanning is carried out in the community at venues including community hospitals, health clinics and GP Practices. Men with an abdominal aortic diameter of less than 3cm are discharged from the Programme. Men found to have an aorta between 3 and 5.4cm are offered surveillance: o small AAA (3-4.4cm) - annual scan o medium AAA ( cm) - quarterly scan Men have a telephone appointment with the AAA surveillance nurse to discuss the result and the implications of an AAA on their health. They are encouraged to make appointment with their GP Practice for lifestyle and health advice, blood pressure monitoring and appropriate medical therapy. Practices are informed that the man has been advised to make an appointment with their GP. Men with a large AAA of 5.5cm or more in diameter are referred to their local Vascular Network Multi Disciplinary Team. Date: April 2014 Version:1 Page: 21 of 25

22 11.4 Engagement Activities Having a programme aimed solely at men is new for Screening Division and the team are working hard to engage in new ways. A launch event was carried out in May and has been followed up with engagement events with primary care and in communities. The letters, information leaflets and website content have all been developed using focus groups to ensure that they provide the necessary information in a way that meets the needs of the target group Target The target uptake standard is that 80% of invited men attend for screening Progress The programme is still in its infancy and has not collected a year s worth of data yet. For the period May to December 2013 the number of 65 year old men screened was 11,248 (includes men with non-visualised aorta) and the monthly uptake rate was consistently between 70% and 72% Current All-Wales Issues Vascular networks For a man with a large AAA, the responsibility of WAAASP ends when he has been seen by the appropriate member of the Vascular MDT, which might be a surgeon, an interventional radiologist or a specialist nurse. WAAASP takes a keen interest in the development and the governance of the vascular networks in North and South Wales, although the responsibility for this lies outside the programme Access Screening is carried out in locations that do not belong to WAAASP and there have been incidents where Health Boards have given short notice when locations are no longer available. This is disruptive to service provision. There has been some difficulty in providing AAA screening to men who are unable to transfer to the examination couch either independently or with assistance from their own carer as there is a lack of clinics used by WAAASP that hold suitable mobility aids. This is a small number of men across Wales, and arrangements have been made for domiciliary scans to be carried out. Date: April 2014 Version:1 Page: 22 of 25

23 12 Newborn Bloodspot Screening Wales Project Newborn bloodspot screening is when a small sample of blood is taken from the baby s heel, ideally on day five of the baby s life. This blood sample is screened for rare but serious diseases that respond to early intervention to reduce mortality and/or morbidity. The screening test is part of routine post natal care. In 2011 at the request for Welsh Government, a project was established to ensure a sustainable and safe national newborn bloodspot screening programme; and to introduce screening for medium chain acyl-coa dehydrogenase deficiency (MCADD) and sickle cell disorders (SCD). The main tasks of the project have now been completed and this project is now closing and moving into programme phase under the governance of Public Health Wales. Wales now offers screening for all of the conditions recommended by the UK National Screening Committee. The programme has been rebranded; a website has been developed; information leaflets for parents have been developed and available; screening for MCADD was implemented in June 2012 and screening for sickle cell disorders was implemented in June 2013; training packages and video was developed and cascade training undertaken for sample takers in the health boards; governance leads with a defined remit and resource for each Health Board were identified; an interim failsafe was established and from February 2014 a bespoke information based system to identify eligible babies who do not have a newborn bloodspot screening sample in the Newborn Screening Laboratory by day 14 of life was implemented. This programme will still continue to develop in the future. For example the UK National Screening Committee is currently consulting on whether three additional conditions should be recommended to screen for as part of the programme. Date: April 2014 Version:1 Page: 23 of 25

24 13 Screening Division Contacts Role Telephone Director Dr Rose Fox Deputy Director Dr Sharon Hillier Head of Programme Breast Test Wales Dean Phillips Head Programme Cervical Screening Wales of Rachel Jones Head of Programme Wales Abdominal Aortic Aneurysm Screening Programme Llywela Wilson Head of Nursing, Child and Maternal Screening Ruth Lawler Head Programme Bowel Screening Wales of Hayley Heard Lead Screening Engagement Specialist Heather Ramessur- Marsden Date: April 2014 Version:1 Page: 24 of 25

25 14 References 1. National Screening Committee. Available at: [Accessed 8 th March 2014] 2. National Screening Committee. Available at: [Accessed 8 th March 2014] 3. Quinn, M., et al., Registrations of cancer diagnosed in , England & Wales in Health Statistics Quarterly 07 Autumn Office for National Statistics. p Welsh Cancer Intelligence and Surveillance Unit. Cancer in Wales : A comprehensive Report. [Accessed 8 th March 2014] 5. Welsh Cancer Intelligence and Surveillance Unit. Cancer in Wales FINAL%28Eng%29.pdf [Accessed 8 April 2014] 6. Welsh Cancer Intelligence and Surveillance Unit. Cancer incidence in Wales [Accessed 8 th March 2014] 7. NHS Cancer Screening Programme. Published 26 th October Available at [Accessed 8 th March 2014] 8. NHS Cervical Screening Programme. HPV primary screening in the NHS Cervical Screening Programme. Available at [Accessed 8th March 2014] 9. Newborn Hearing Screening Wales. Report of the Associate Director Available at: [Accessed 8 th March 2012] 10. Welsh Government. Births and infant mortality. An annual report which presents information by age of mother, births outside of marriage, fertility rates and weight of baby. Available at: [Accessed 7 th April 2014] 11. National Screening Committee policy information available at: [Accessed 8 th March 2012] 12. NICE 2008 C G62. Antenatal Care: Routine Care for the Health Pregnant Woman. London: RCOG Press. Available at: [Accessed 8 th March Revised Policy, Standards and Protocols to support the provision of antenatal Screening in Wales. Published April 2010 by Antenatal Screening Wales. Available at: [Accessed 20 th Jan 2014] Date: April 2014 Version:1 Page: 25 of 25