Report on Population based National Screening Programmes in Aneurin Bevan Health Board

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1 Report on Population based National Screening Programmes in Aneurin Bevan Health Board Author: Dr Sharon Hillier; Deputy Director, Screening Division Date: 8 th March 2012 Version: 1 Purpose and Summary of Document: The purpose of this report is to update the Health Board on population based national screening programmes in Aneurin Bevan Health Board run by Screening Division, Public Health Wales NHS Trust. This report provides an update from the annual screening report dated February The Board is asked to note the contents of the report. Sponsoring Executive Director: Dr Gill Richardson, Executive Director of Public Health, Aneurin Bevan Health Board Who will present: Dr Gill Richardson, Executive Director of Public Health, Aneurin Bevan Health Board Documents attached: Nil Date of Board meeting: 28 th March 2012 Committee/Groups that have received or considered this paper: Public and Partnership Committee Please state of the paper is for: Discussion Decision Information X

2 Contents REPORT ON POPULATION BASED NATIONAL SCREENING PROGRAMMES IN ANEURIN BEVAN HEALTH BOARD PURPOSE BACKGROUND FINANCIAL UPDATE SCREENING ENGAGEMENT ACTIVITY BREAST CANCER SCREENING CERVICAL SCREENING BOWEL SCREENING NEWBORN HEARING SCREENING ANTENATAL SCREENING WALES ABDOMINAL AORTIC ANEURYSM SCREENING PROJECT NEWBORN BLOODSPOT SCREENING WALES PROJECT 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).

3 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 Aneurin Bevan Health Board. 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. Using research evidence, pilot programmes and economic evaluation, it assesses the evidence for programmes against a set of internationally recognised criteria covering the condition, the test, the treatment options and the effectiveness and acceptability of the screening programme. Assessing programmes in this way is intended to ensure that they do more good than harm at a reasonable cost. The UK NSC also regularly reviews policy on screening for different conditions in the light of new research evidence becoming available. 2 The Wales Screening Committee takes advice from the UK NSC and the Welsh Government makes the decision whether the screening programme is implemented for the population of Wales. Screening Division, Public Health Wales is charged with managing the four population based national screening programmes across Wales; Breast Test Wales, Cervical Screening Wales, Bowel Screening Wales and Newborn Hearing Screening Wales. The Division also hosts the Antenatal Screening Clinical Network (Antenatal Screening Wales). In 2010 Screening Division was tasked with developing two new programmes; Wales Abdominal Aortic Aneurysm Screening Programme and Newborn Bloodspot Screening Wales. 3 Financial Update The Long Term Agreement funding for Aneruin Bevan LHB for 2012/13 is as follows: Bowel Screening: 0.6m; Cervical Screening: 1.5m and Newborn Hearing Screening 0.09m. In addition to the above core funding, screening purchases a number of consultant sessions to support the delivery of the Breast, Cervical and Date: 8 March 2012 Version:1 Page: 3 of 24

4 Bowel screening programmes. This is in the order of 20 consultant sessions a week. Breast biopsies are funded on an activity basis The project to deliver an Abdominal Aortic Aneurysm Screening Programme for Wales is underway. It has been established that Health Boards will bear the cost of aneurysm repair. Costs of the programme will be produced as part of the project work. The screening programmes are delivered across Wales and there are times that some participants have further diagnostic tests or treatment outside of their Health Board. This occurs for a number of reasons but mainly where the individual is assessed by the receiving Multidisciplinary Team. The programmes will also cross refer where services experience backlogs or capacity issues. This flexibility is important to reduce anxiety for participants who have been invited to a screening programme rather than seeking care themselves. 4 Screening Engagement Activity The Screening Engagement Team (SET), formerly Screening Promotion Team continues to deliver health education and screening information to a multitude of agencies across Wales. Partnership working and the ability to work at all levels, both locally and nationally is integral to the success of the team. Each public health team has been asked to nominate a member who can act as the link with screening to ensure that consistent key messages are communicated efficiently to the population. The key recent developments lead by the Screening Engagement team include: 4.1 The Volunteer Programme Currently the team are conducting a volunteer pilot project which is being phased in over the next 12 months. Engaging with community partners the team have developed a robust volunteer model which will be employed by screening. The volunteers and the role they will provide will be valuable in working within certain communities and disseminating information in relation to screening. On completion of the pilot, a report outlining the project findings and recommendation will be submitted for consideration. 4.2 Social Media This year, facebook pages have been established for Cervical and Bowel Screening Programmes. Polls, surveys, feeds and comments have been central to finding out the public thoughts on these programmes. Screening Division also has a you tube site whereby digital stories are available to view by the general public. These digital stories have been developed for all established programmes and are used primarily in health education settings and within national campaigns. Services Users have worked with Date: 8 March 2012 Version:1 Page: 4 of 24

5 the team to develop the stories. The Screening Engagement Team are now working towards building the digital story library encompassing all aspects of the screening journey and using these powerful resources to influence service improvement. 4.3 National Campaigns A number of national campaigns have been supported by the Screening Engagement Team. These include supporting Bowel Cancer Awareness Month and European Cervical Cancer prevention Week (ECCP) week. Tenovus has supported the team by providing the chemotherapy mobile unit which has been placed in community settings across Wales. Supporting these campaigns has enabled the organisation to engage with members of the public within their own locality. 4.4 Learning Disability Resources Development This year has seen the launch of Going for breast assessment and Going for Colposcopy. These packs provide participants with a learning disability, bite size information which explains the process of attending for further investigation. These packs are available on the screening website. [ This work was completed with the assistance of participants and stakeholders with an interest in learning disabilities including health professionals, advocacy and voluntary sector agencies. This work has been recognised internationally with the project leads being accepted to present at the ISSAID World Congress in July It is the intention of the project leads to launch the Having a Colonoscopy pack later in the year. 4.5 Virtual Reading Panel To ensure the opinions of the public are considered in the information produced by screening, a virtual reading panel has been established. This panel consists of individuals who have expressed that they would like to participate in public involvement activity. Public information produced within screening is now sent to the virtual panel members for them to comment on resources and literature being developed. 4.6 E- learning Development In addition to screening engagement, expertise in training and education in screening has supported Stop Smoking Wales, Public Health Wales to develop an e-learning Brief Intervention training package for NHS staff. Date: 8 March 2012 Version:1 Page: 5 of 24

6 5 Breast Cancer Screening 5.1 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. There were on average 2,281 registrations for Breast Cancer per year in Wales from 1995 to There were 2,625 registrations in The average number of deaths per year in Wales from breast cancer from 1995 to 2009 was Aim of Programme: Breast Test Wales The aim of the programme is to reduce mortality from breast cancer by detecting breast cancer early. 5.3 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 nearly 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. 5.4 Engagement Activities: The screening information leaflet and invitation letter is being reviewed to identify the needs of the women in terms of the information required to inform them of breast screening and their appointment. Women have been recruited from across Wales and a series of focus groups have been held to look at this process. The team are awaiting the outcome of the breast review in England before completing this piece of work but will be engaging with women to ensure the content of this leaflet meets their needs and accurately reflects the service provided in Wales. Date: 8 March 2012 Version:1 Page: 6 of 24

7 All-Wales Aneurin Bevan Health Board Blaenau Gwent Caerphilly Monmouthshire Newport Torfaen Public Health Wales 5.5 Target The minimum uptake standard is 70% of invited women attending for screening, while the target is 80%. 5.6 Progress Table 1: Uptake of Breast Screening of eligible women aged years for Wales; Aneurin Bevan HB and unitary authority areas for period.1 April March Data from Screening Division. Population Percentage 74.7% 75.0% 69.7% 74.5% 78.7% 73.2% 74.2% Number eligible women tested 98,956 19,760 2,498 4,329 6,770 1,736 4,427 Overall the uptake of Breast Screening for the population of Aneurin Bevan was 75.0% and met the minimum uptake target. Monmouthshire had the highest uptake and Blaenau Gwent had the lowest uptake for across the Health Board. Overall the uptake figures are a few percentage lower than the previous year, although the uptake for Torfaen is nearly 4% higher during this period. As breast screening is on a three year round then a one year period is sometimes unrepresentative as only a proportion of women may be invited from a defined geographical area. 5.7 Current All-Wales Issues: Implementation of Digital Mammography The major change to Breast Test Wales is the introduction of Digital Mammography which replaces analogue films. The implementation is complete in West Wales and South East Wales. In November 2010, the Minister for Health and Social Services visited the Breast Test Wales screening centre in Swansea to see the refurbished centre and the new screening equipment. Implementation is planned to start in North Wales in April Invitations for breast screening have had to be slowed down in each region during this period to ensure that women, who need assessment, Date: 8 March 2012 Version:1 Page: 7 of 24

8 are able to be offered follow up in a timely manner. Screening Division is appreciative of the continued support from Health Board colleagues while this change process has been managed. Independent Review of UK NHS Breast Screening Programme In response to debate about the effectiveness of breast screening and criticism of the information given to women, an independent review of breast screening was announced in October The overall aim of the review is to develop an up-to-date assessment of both the benefits and harms associated with population breast screening programmes. This will involve a rigorous review of all the latest evidence by the independent panel to decide if the current screening programme needs to be changed. Screening Division will take the findings of the review once available into account for Breast Test Wales. Review of Breast Test Wales Breast Care Nursing Service A review of the Breast Test Wales Breast Care Nursing service post diagnosis and pre-admission to hospital for breast cancer treatment has been undertaken. The review considered if the current model used was evidence based, beneficial to the women, cost effective and deliverable for Screening Division. The literature was reviewed and views of women who had used the service and health professionals sought. The review supported the current model of including offering home visits to women post diagnosis and preadmission to hospital as it was valued by both women and health professionals. 5.8 Current local issues: The Breast Screening Centre reopened in January 2012 following the implementation of digital equipment and upgrading of the building. The closure of the centre and the change of technology has delayed the screening of women. The programme is currently four to six months behind with screening in some areas. Date: 8 March 2012 Version:1 Page: 8 of 24

9 6 Cervical Screening 6.1 Epidemiology Cervical cancer is the 13th most common cancer in Wales. During the period there has been a decrease in the incidence of cervical cancer.4 There were on average 174 registrations for Cervical Cancer per year in Wales from 1995 to There were 130 registrations in which is a considerable reduction in incidence from previous years and this figure has been validated. The average number of deaths per year in Wales from Cervical cancer from 1995 to 2009 was 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. 6.3 Method Women aged 20 to 64 years are sent an invitation letter to attend for a cervical screening test every 3 years. Women can attend their General Practice or their local NHS Community & 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. 6.4 Engagement Activities The team are currently engaging with the public to ascertain their knowledge of the human papilloma virus (HPV). The team whilst supporting ECCP week have been out in the community asking women what they know about HPV. The public response to this consultation has been so far encouraging with women actively taking part. The outcome of this piece of work will be collated in due course and reported back to the cervical senior management group for further consideration. 6.5 Target The target standard is that 80% of eligible women aged 20 to 64 years are screened. Date: 8 March 2012 Version:1 Page: 9 of 24

10 All-Wales Aneurin Bevan Health Board Blaenau Gwent Caerphilly Monmouthshire Newport Torfaen Public Health Wales 6.6 Progress Table 2: Coverage of Cervical Screening of eligible women aged 20 to 64 years for Wales; Aneurin Bevan Health Board and unitary authority areas for period 1 April March Data from Screening Division. Population Percentage 76.2% 78.5% 78.3% 78.3% 80.9% 77.1% 78.8% Number eligible women tested 63, , ,672 38,255 19,480 31,244 19,787 For the cohort aged years the coverage was 78.5% for the Health Board overall, which did not reach the target. However Monmouthshire had an uptake of 80.9% which did reach the target. The coverage has remained very similar to the previous year reported. The coverage is a particular problem for younger women as the cohort aged years was 80.8% for the Health Board. 6.7 Current All-Wales Issues: Age of first invitation and frequency of invitation The current policy for Wales is that women aged years are invited for cervical screening every three years. This is the same as the policy in Scotland. However England and Northern Ireland invite women aged years every three years and those aged over 50 years are invited every 5 years. The decision was based on evidence that many younger women have cellular changes which resolve spontaneously and the screening could lead to some unnecessary treatments. Wales Screening Committee has asked UK NSC to advise on the age of first invitation and frequency of invitation and a UK consultation is being proposed. The outcome of the consultation will inform the policy decision for cervical screening in Wales Automated Screening Technology Cervical Screening Wales will be the first screening programme in the UK to adopt an automated screening technology. The BD FocalPoint Date: 8 March 2012 Version:1 Page: 10 of 24

11 identifies up to 25% of successfully processed slides as requiring No Further Review (NFR). Those samples identified as NFR by the Focal Point slide profiler can be reported as "all clear", requiring only a manual quality control examination. In this way the NFR category is the equivalent of a primary manual screen. The samples not allocated to the NFR category will have a manual conventional screen followed by a manual quality control examination following usual protocol. With more than 200,000 cervical tests undertaken across Wales during 2010/11, this represents a significant reduction in laboratory workload and will also help laboratories achieve acceptable screening turnaround times as set out within Cervical Screening Wales Quality Manual Human Papilloma Virus testing Human Papilloma Virus (HPV) testing is being incorporated into the NHS Cervical Screening Programme in England. HPV testing will now be used for 'HPV triage' of women with borderline or low grade cervical abnormalities and also as a test of cure following treatment for CIN. 7 Where HPV triage is implemented in England, any woman who has a cervical screening test result of borderline changes or mild dyskaryosis will automatically have an HPV test performed on her sample. If HPV is found she will be referred for colposcopy and if HPV is not found she will be returned to routine screening every 3 or 5 years depending on her age. For test of cure, Women who have a normal, borderline or mild cervical screening result six months after treatment for CIN are HPV tested. 8 Women whose samples are negative for high-risk HPV negative will have three year routine recall which will avoid the need for up to 10 years of annual cervical screening. HPV testing is not currently part of the screening test in Wales. The implications of this for Cervical Screening in Wales is being explored and considered. The introduction of HPV as a primary screening test is being considered for the NHS Cervical Screening Programme. This would require a policy change as this would be a move from a cytology led programme to a HPV led programme. Further advice is awaited from the UK NSC before considering implementation in Wales Access to Cervical Screening Tests in the Community Screening has been made aware of some difficulties with access to smear tests in Wales, as we frequently receive calls from women who we have invited but who are not able to arrange for a smear to be taken within a reasonable timeframe. The problem appears to be mostly with provision of cervical cytology in community sexual health services, which have in the past provided a valued route for women who prefer not to receive sexual Date: 8 March 2012 Version:1 Page: 11 of 24

12 health services, including cytology, from their GP practice. It appears women are increasingly finding this service difficult to access. Comparing numbers and proportions of smears taken in sexual health clinics in with five years previously, (2005-6), numbers of smears from community clinics fell from 19,889 (9% of smears) to 14,211(6.6% smears). (Data from Screening Division). Screening has requested information from Health Boards for their policy for provision of cervical cytology in sexual and community health services, and details of plans to improve access to cervical screening for its population. 6.8 Current local issues: The waiting times for colposcopy clinics in the health board have improved and there is a commitment to maintain this. Some forward planning is needed to ensure that clinical cover for the clinics is maintained. New clinics have been set up in Ysbyty Aneurin Bevan and Ysbyty Ystrad Fawr. Multidisciplinary Teams are excellent for Royal Gwent and Caerphilly areas. There is excellent attendance and participation at the Local Management Group meetings for South East. Laboratory services have no issues and reporting times are within standard. Date: 8 March 2012 Version:1 Page: 12 of 24

13 7 Bowel Screening 7.1 Epidemiology Colon cancer is the third most common cancer in both males and females in Wales for the period There were on average 675 male registrations and 622 females registration for colon cancer per year in Wales from 1995 to There were 865 male registrations and 664 female registrations in The average number of deaths per year in Wales from colon cancer from 1995 to 2009 was 332 for males and 317 for females. 4 The lifetime risk of being diagnosed with bowel cancer is on average 4.0% for males and 3.4% for females 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. The aim is that the age range is widened and men and women aged are invited for bowel screening in the future. 7.4 Engagement Activities The Screening Engagement Team have been actively working throughout Wales, delivering bowel screening information. Working in partnership at a community level a number of workplace health, community information sessions and health professional training events have been delivered. Newspaper adverts have also been booked and will appear in March in three newspapers South Wales Echo, South Wales Argus and Evening Leader. 7.5 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. Date: 8 March 2012 Version:1 Page: 13 of 24

14 All-Wales Aneurin Bevan Health Board Blaenau Gwent Caerphilly Monmouthshire Newport Torfaen Public Health Wales 7.6 Progress Table 3: Uptake of Bowel Screening of eligible men and women aged years for Wales; Aneurin Bevan HB and unitary authority areas for period 1 April March Data from Screening Division. Population Percentage 53.0% 52.7% 51.0% 53.2% 55.6% 50.0% 53.4% Number eligible men and women tested 108,175 19,943 2,392 6,202 3,809 4,320 3,220 The uptake is lower than the target uptake of 60% for All-Wales and for Aneurin Bevan Health Board. Monmouthshire has the highest uptake and Newport has the lowest uptake for the health board. Compared to figures for the previous year there has been a general reduction of uptake rates of about 2%. 7.7 Current All-Wales Issues: The positivity rate has reduced as we have moved from prevalent to incident round for most of the invited participants. As a result the waiting times for assessment and colonoscopy are within standard across Wales. Local teams have worked very hard to achieve the 2 week standard which has been sustained since the summer At the request of Welsh Government a small working group has been convened to examine options of future programme extensions to those aged between 50 and 60 years and the impact of this on health board services. There is Health Board representation at this working group. The Bowel Screening Wales has found that polyp detection rates are higher than expected at around 60% across Wales and many complex lesions are being detected. There was no agreed mechanism for an expert opinion for discussion of options and technical feasibility of removal for complex polyps found during screening colonoscopies. As there was a need for Bowel Screening Wales to ensure optimal management and equitable services for participants across Wales, a funded pilot of an expert panel has been established to provide a second opinion to clinicians and MDT s across Wales. A national referral centre for complex Date: 8 March 2012 Version:1 Page: 14 of 24

15 polypectomy has been established as a funded pilot to take referrals from all Local Assessment Centres in Wales. 7.8 Current local issues: There are three approved Screening Colonoscopists at the Health Board and three Specialist Screening Practitioners with one practitioner temporary covering a secondment. The screening lists are undertaken at the new unit at Ysbyty Ystryd Fawr. The positivity rate has continued to be higher than average for Wales for the health board population. Date: 8 March 2012 Version:1 Page: 15 of 24

16 8 Newborn Hearing Screening 8.1 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. 8.2 Aim of Programme: Newborn Hearing Screening Wales The aim of the Newborn Hearing Screening Wales 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. 8.3 Method Newborn Hearing Screening Wales receives notification of births through central registration. Screening is undertaken by screeners employed by the screening programme. Most babies are screened in hospital with 80% screened in the first week of life. 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. 8.4 Engagement Activities Parental views and experiences of the newborn screening programme are an important measure of the quality of the programme. Mothers of well babies who have completed newborn hearing screening in Wales report high levels of satisfaction and low levels of anxiety. A questionnaire survey of 120 mothers of babies in neonatal units in Wales was undertaken between September 2009 and January 2010 to evaluate experiences of newborn hearing screening. 8.5 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%. Date: 8 March 2012 Version:1 Page: 16 of 24

17 All-Wales Aneurin Bevan Health Board Blaenau Gwent Caerphilly Monmouthshire Newport Torfaen Public Health Wales 8.6 Progress Table 4: Coverage of Newborn Hearing of eligible babies for Wales; Aneurin Bevan Health Board and unitary authority areas for period 1 April March Data from Screening Division. Population Percentage 99.6% 99.7% 99.9% 99.5% 99.5% 99.9% 99.9% Number of babies tested 34,528 6, , ,897 1,079 The coverage rate for Newborn Hearing is well above the target across the whole of Aneurin Bevan Health Board. The 2011 report from Newborn Hearing Screening Wales shows that the screening programme continues to perform to the highest standards Current All-Wales Issues In 2011, Newborn Hearing Screening Wales (NBHSW) undertook Quality Assurance (QA) visits to audiology sites providing services to the programme. The aim of the QA site visit was to identify areas of good practice and areas for improvement in relation to NBHSW assessments and Paediatric Audiology services provided to babies and their families diagnosed from the screening programme. 8.8 Current local issues Newborn hearing assessments are undertaken in the Royal Gwent Hospital and Nevill Hall Hospital. In addition to Gwent residents, babies from South Powys are also assessed at Nevill Hall. The new paediatric test room in the Serennu Children s Centre in Newport has been a significant development for the service. The Professional Lead provides medical input but the limited time allocated for audiology sessions limits the effectiveness of her role. Recommendations have also been made regarding improvements to multidisciplinary working. There is a possibility that Aneurin Bevan may be providing more services to South Powys. If this is progressed this should include the establishment of multiagency working in this area Date: 8 March 2012 Version:1 Page: 17 of 24

18 9 Antenatal Screening 9.1 Epidemiology In 2010 there were 35,952 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 indentified 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. Revised policy, standards and protocols were agreed and published in April 2010 to support the provision of antenatal screening in Wales Engagement Activities Antenatal Screening Wales is working with the Down s syndrome association to consider both the implementation of combined screening and how to provide accurate information about living with a person with Down s syndrome. 9.5 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, downs syndrome; early pregnancy ultrasound scan (dating) and fetal anomaly ultrasound scan. 13 Antenatal screening for sickle cell and thalassaemia Date: 8 March 2012 Version:1 Page: 18 of 24

19 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 Table 5: Uptake of Antenatal Screening Tests by pregnant women resident in Wales; Aneurin Bevan HB and hospital areas for period 1 st Jan 2010 to 31 st June Data supplied by the Health Board to ASW. Population All-Wales Aneurin Bevan Health Board Rubella (denominator for other tests, percentage uptake 100% by default) Number tested 17,762 3,238 Human Immunodeficiency Virus (HIV) Percentage 98% 99.8% Number tested 17,344 3,231 Hepatitis B Percentage 98% 99.9% Number tested 17,414 3,235 Syphilis Percentage 98% 100% Number tested 17,431 3,241 Sickle cell and Thalassemia screening (offered if woman meets criteria) Number tested 3, Down s Syndrome (only includes NHS screening test) Number tested 10,110 1,782 Amniocentesis or Chorionic Villus sampling (offered if woman has high chance Down s Syndrome screening result) Number tested Date: 8 March 2012 Version:1 Page: 19 of 24

20 The precise numbers of antenatal screening test 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 Aneurin Bevan Health Board 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 increase 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. It is noted that the uptake 9.7 Current All-Wales Issues In March 2011 the Minister indicated that the antenatal Down s syndrome screening programme in Wales should change and combined screening should be offered to women who present for care in early pregnancy. Health Boards, Welsh Health Specialised Services Committee (WHSSC) and Public Health Wales have been asked to work together to achieve this change promptly and within the existing resources. Antenatal Screening Wales provides a governance framework for the programme and has been asked to work with key stakeholders to co-ordinate and facilitate this change and has established a formal project. The Health Board has been asked to establish an implementation team. 9.8 Current local issues: None to report. Date: 8 March 2012 Version:1 Page: 20 of 24

21 10 Wales Abdominal Aortic Aneurysm Screening Project In 2007 the UK NSC advised that Abdominal Aortic Aneurysm (AAA) screening should be introduced in the NHS. In light of the risks associated with surgical repair of screen detected aneurysms, (a 5-6% mortality rate from all elective AAA repairs) the NSC added the provisos that men should be provided with clear information about the risks of elective surgery, and that networks of vascular surgical services should be created in order to undertake the surgical repair of screen-detected aneurysms. 14 In April 2010, Public Health Wales was asked to plan the introduction of a national screening programme for AAA screening (Wales Abdominal Aortic Aneurysm Screening Programme, WAAASP). The AAA Project Board has agreed a start date for the programme of 1 st December The aim of the Abdominal Aortic Aneurysm (AAA) screening programme is to reduce AAA related mortality by up to 50% by 2025 through providing a systematic population based screening programme for men resident in Wales during their 65th year. Screening also has the potential to cause both physical and psychological harm to men invited. It is essential that this harm is minimised, so that the benefits of screening outweigh the costs. The proposed screening model for AAA screening in Wales is that men in their 65 th year will be sent an invitation to attend for an abdominal ultrasound scan. Ultrasound scanning will take place in the community and men with an aortic diameter of less than 3cms will not be invited for further screening. Men with a small or medium aneurysm (between 3cms and 5.4cm in diameter) will be invited for surveillance screening and will be offered lifestyle advice. Men with large aneurysms of 5.5cm or more in diameter will be referred to an appropriate multidisciplinary team in the Elective Vascular Network. Screening Division is facilitating the development of Vascular Networks across Wales. Date: 8 March 2012 Version:1 Page: 21 of 24

22 11 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 (counting day of birth as day 0). 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 Wales the conditions currently screened for are Phenylketonuria, Congenital Hypothyroidism and Cystic Fibrosis. The project has been initiated and the board, team and subgroups have been established with representation across the groups from public health, midwives, health visitors and other health professionals. These tasks will take time to action and will be delivered in stages. The main tasks are initiating screening for MCADD and sickle cell disorder; improving information to parents and health professionals; improving training to health professionals undertaking the screening test; setting policies and standards for the programme and establishing information technology based failsafe system. Communication mechanisms with stakeholders and health professionals have been established to ensure effective two way communication and regular update bulletins are being sent out electronically. The proposed start date to implement MCADD screening is June 2012 and Sickle Cell Disorder Screening in December Cessation of Screening for Duchenne Muscular Dystrophy The Chief Medical Officer wrote to inform the NHS in Wales that Screening for Duchenne Muscular Dystrophy (DMD) was ceased to be offered from 30 th November The reasons for the cessation of the service were due to the withdrawal of the bloodspot external quality assurance scheme and quality control material by the Centers for Disease Control (CDC) in the USA and problems with the supply of commercially available reagents needed to undertake the test. Date: 8 March 2012 Version:1 Page: 22 of 24

23 12 References 1. National Screening Committee. Available at: [Accessed 8 th March 2012] 2. National Screening Committee. Available at: [Accessed 8 th March 2012] 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 2012] 5. Welsh Cancer Intelligence and Surveillance Unit. Cancer incidence in Wales [Accessed 8 th March 2012] 6. NHS Cancer Screening Programme. Published 26 th October Available at [Accessed 8 th March 2012] 7. NHS Cervical Screening Programme. HPV test of cure. Available at [Accessed 8th March 2012] 8. NHS Cervical Screening Programme. HPV triage. Available at [Accessed 8th March 2012] 9. Newborn Hearing Screening Wales. Report of the Associate Director Available at: [Accessed 8 th March 2012] 10.Live births to welsh residents by mothers age and local health board. Statswales. Available at: d=10475 [Accessed 8 th March 2012] 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 2012] Date: 8 March 2012 Version:1 Page: 23 of 24

24 13. 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 2011] 14.UK National Screening Committee. The UK National Screening Policy on Abdominal Aortic Aneurysm. Available at [Accessed 8th March 2012] 15 CMO letter. CMO(2011) 9. 3 November Welsh Government. Available at 43LPpbGSqK2Jcy3NWq0prnMwK1NG4zLZY0xQ3VDdzbyL1JQYbvn! ?lang=en [Accessed 8 th March 2012] Date: 8 March 2012 Version:1 Page: 24 of 24

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