Screening Matters Issue 5, November - December 2011

Welcome to the fifth edition of screening matters.

This week sees the publication of the Public Health England operating model with screening firmly a part of the functions. Full details can be found on the Department of Health website.

We are working with colleagues in commissioning, cancer screening and the PHE transition team to ensure a safe transition and effective systems for the future.

Meanwhile we continue to work on improving screening programmes. We are consulting on the range of conditions that are picked up on the blood spot and gathering and reporting on key performance indicators.

Thanks to everyone in the team and colleagues in the NHS which continue to keep screening on the agenda.

Happy Christmas and a good new year.

Dr Anne Mackie, Director of Programmes, UK National Screening Committee

Annual reports

The UK NSC has published its annual reports for 2010-11. The first - Screening in the UK 2010-11: Effective Policies and Programmes - covers policy development, as well as the screening programmes in each UK country. The second - Screening in England 2010-11 - provides a more in depth look at the NHS Screening Programmes in England.

Atlas of Variation

The second NHS Atlas of Variation in Healthcare has been published. It aims to identify variation in care offered across the NHS in England and to help clinicians and commissioners to reduce unwarranted variation, as well promoting transparency and accountability in the NHS.

There are several screening-related entries:

• Map 21: Percentage of the diabetic population receiving screening for diabetic retinopathy by PCT
• Map 24: Mean time from referral to assessment for hearing tests in newborns by PCT

Current policy consultations

• Autism (ends 16 January 2012)
• Rubella susceptibility in pregnancy (ends 6 January 2012)
• Cytomegalovirus (ends 30 March 2012)
• Duchenne muscular dystrophy (ends 30 March 2012)

New consultations due to start soon

• Tays Sachs
• Familial Dysautonomia
• Canavan Disease
• HTLV

Policy recommendations made at last UK NSC meeting

• Alcohol problems
• Child hypertension
• Familial hypercholesterolaemia in adults
• Fragile X
• Hepatitis C in pregnancy
• Postnatal depression
• Pre-eclampsia
• Toxoplasmosis

It was agreed at the UK NSC meeting in November not to recommend screening for any of these conditions.

Learning from serious incidents - eLearning Module

The cross programme QA and Education team have recently commissioned the development of an interactive elearning resource to support the work surrounding quality assurance, and in particular the handling and learning from serious incidents. The resource will be freely available from the UK NSC website.

Built in the now familiar house style the resource will be easy to access and attractive to use. Each of the eight non-cancer screening programmes will contribute vignettes to be developed into meaningful learning sessions. The resource should be ready by Spring 2012.

Further details will be made available in due course.

Health Screening Module 2011

The second Masters level Health Screening Module at Warwick Medical School took place last week. Students came from primary care, commissioning, national screening programmes, local government and acute NHS Trusts. Four students undertook the module as part of their MPH degree pathway, however the majority were studying it as a standalone module to support their role in screening. Preliminary feedback is excellent. Quality assurance was identified as a priority learning need by this student cohort, which possibly reflects the national activity in this area this year. The module will run again in December 2012 and will incorporate additional sessions on quality assurance.

» More information is available on the CPD website.

QA Pilot Process

The QA pilots are still in progress and are going well. They are nearing completion with one more review due to take place at the beginning of January 2012. In the meantime, the QA team are evaluating the outcomes of the process on an ongoing basis and using this information to review, update and improve the various tools and documents which are to be used in the final approach. Following completion of the pilots, an overarching report will be drawn up evaluating the entire process which will help to inform the final approach. It is planned for the final report to be sent out for publication by the end of March 2012.

Commissioning Frameworks

The commissioning frameworks for all antenatal and newborn screening programmes and that for the screening elements of child health record departments have been revised and are now available on the QA page.

Serious Incident Toolkit

The Serious Incident Toolkit is in the final stages of completion. The tool was developed as a way to bring together all of the serious incident work developed by the Cross Programme QA Group over time and house it in one place for all users to refer to for up-to-date resources and information. It is planned to go live by mid January.

Serious Incident Workshop

The UK NSC hosted a Serious Incident Workshop on 19 October in Central London. The aim of the workshop was to explore the differences in perception of serious incidents and to develop principles for distinguishing between a screening "serious incident" and other "incidents". A paper addressing some of the issues raised and the proposed next steps is currently in draft form and will be added to the SI Toolkit once confirmed & finalised.

Blood Spot Failsafe

The Blood Spot Failsafe Strategy Board have agreed the scope for the Blood Spot Failsafe procurement, as well as the procurement process, and resources have been allocated to the rewrite of the Blood Spot specification. A high level road map for Blood Spot Failsafe is being drafted. Work has commenced on the Project Initiation Document and a communications strategy will be drafted in the new year. Job Descriptions and Person Specification for the Blood Spot failsafe implementation midwife have also been worked up.

Leeds Pilot for electronic messaging for newborn blood spot screening results between Labs & Child Health Systems

The Leeds e-Messaging pilot has been successfully delivered electronic messages between the Leeds screening laboratory system and the Bradford & Craven Practice Child Health Record Department. The paper messaging is ready to be turned off after a thorough evaluation of the risks and the changed processes, the clinical governance position and risk associated with turning off paper reports.

Feedback from the Connecting for Health Clinical Safety Group is that the Leeds messaging pilot should be extended to the remaining Child Health Record Departments across Yorkshire & Humber, (except CHRD areas served by Sheffield Newborn Screening Laboratory) as the benefits identified are significant in terms of clinical safety and financial savings. This programme for the extension of the Leeds pilot will be rolled out early in 2012.

Next Steps

• A training pack is in development for remaining Yorkshire & Humber CHRD departments 
• An implementation plan and timeline have been developed for the Y&H roll out 
• Prepare an ‘appraisal' pack that will be sent to each PCT before they agree to receive messaging which makes it clear what outstanding issues there are, the plan for their mitigation and resolution, and what approvals are in place 
• Work with Regional Team to ensure that the CHRD training pack is in place

» Contact James Walker for further information.

Key Performance Indicators (KPIs)

The data collection process for Q1 2011-12 was much more efficient than previous quarters thanks to the support from the ANNB Regional Teams and Regional Quality Assurance Managers (RQAMs) for Diabetic Retinopathy. Communication across all organisations required to make returns is also improving, with a greatly reduced number of null returns (ie no indication that data could or would be sent to the UK NSC KPI team). This is greatly appreciated and has made the initial analysis process of the data much faster and thus the analysis of the quality of data returned and usability of the KPIs can be reviewed more quickly and efficiently.

As the Q2 2011-12 return period occurs during the festive season and we are aware of many people taking annual leave over this period, the submission deadline has been extended to 6 January 2012 and the review period has been extended to 20 January 2012.

NHS Infectious Diseases in Pregnancy Screening (IDPS) Programme

Review of IDPS standards implementation

A big thank you to all the labs and Trusts around the country who have worked really hard along with the regional ANNCH screening leads in order to complete the recent gap analysis. This was to benchmark current practice against the standards that came out in September 2010. The information that has been returned is really valuable, with some common key issues being raised across England.

Some of the main themes that have been identified are: timeliness in responding to request for repeat samples; communication; lack of fail safes around documentation, monitoring of performance and audit against the standards.

A number of Trusts do not have policies/pathways in place to ensure HBV positive women are referred or seen within 6 weeks, as this is a new standard. Systems for rapid turnaround times for urgent samples have also been a challenge; late booking samples not always marked as urgent; and issues with cover at weekends and out of hours.

Another key issue identified by the majority of regional teams is the timing of the second specimen which is one of the major changes included in the standards. The biggest challenge with this standard is the change to current arrangements/pathways. There are plans to review progress in 2012.

Policy reviews

The reviews on Hepatits C and Toxoplasmosis have recently been completed with no change to the previous decision. A consultation has now started on screening for CMV.

Laboratory standards workshops

There will be 4 laboratory standards workshops taking place in March 2012. These will be held in Leeds, Birmingham and London with the expectation that every lab will be able to send at least one member of staff along. Dates and venues will be confirmed soon.

» See the IDPS website for more information about the programme.

NHS Fetal Anomaly Screening Programme (FASP)

Down's syndrome Screening - Regional Obstetric ultrasound Screening Coordinators (ROSCOs)

The ROSCO group comprises 10 expert sonographers, whose role is to improve sonographer measurement accuracy when acquiring nuchal translucency and crown-rump length measurements for combined screening in the 1st trimester of pregnancy.

During November 2011 the role of the ROSCO was evaluated via a multidisciplinary online survey. The results demonstrated that an overwhelming majority of the respondents (89%) felt that the ROSCO role not only improved support for sonographers providing combined screening, but also led to an improved knowledge of the quality assurance process and the technical accuracy of the nuchal translucency and crown-rump length measurements.

These findings are reinforced by statistical evidence from the Down's syndrome Screening Quality Assurance Support Service (DQASS) who identified an overall improvement in sonographer distribution curves since the introduction of the ROSCO role. The result of this initiative is an enhancement in the overall screening test performance and quality of the service offered to pregnant women.

Consent standards and Guidance

The NHS FASP has developed new guidance around the offer of screening tests for Down's syndrome and Fetal Anomaly. These standards and guidance are intended to maintain and improve the quality of the screening and testing process. They are also intended to enable women to exercise informed choice about any decisions they make.

The four new standards are:

1. All hospital trusts must have a care pathway to provide evidence that the UK NSC and NHS FASP information booklet and leaflets are being used
2. All pregnant women must be offered up-to-date information on Fetal Anomaly screening based on the current available evidence. The NHS Fetal Anomaly Screening Programme recommends the use of the UK NSC "Screening Tests for you and your baby" leaflet. Ordering details feature on the back of the leaflet
3. All eligible pregnant women must be offered 'testing' and this offer must be recorded in the woman's notes and/or hospital IT system at the booking appointment
4. All decisions about the test itself must be recorded in the woman's hand held notes and/or in the hospital information system

» Download the standards from the website.

New publications and resources

NHS FASP has produced a number of new parent and professional resources this autumn. Some are available to order from the programme centre, others from our new distributor Harlow Printing. Please see below for more details:

Publications available to order from the programme on 0845 5277910 are:

• Consent standards and Guidance for fetal anomalies
• Having an early pregnancy scan? poster
• Having an 18+0 to 20+6 week screening ultrasound scan? poster
• Having a mid pregnancy ultrasound scan? Pictorial book for parents
• Having a mid pregnancy ultrasound scan? Pictorial posters to support the book.

Publications available to order from Harlow Printing are:

• Amniocentesis test - information for parents
• Chorionic Villus Sampling test - information for parents
• Chorionic Villus Sampling and Amniocentesis test - information for professionals
• Early pregnancy Tear off pads (combined screening)
• Mid pregnancy Tear off pads
• Screening for Down's syndrome in twin pregnancies

NHS Linked Antenatal and Newborn Sickle Cell and Thalassaemia (SCT) Screening Programme

Regional updates in 2012

The Programme has been running CPD accredited training days across England to update all staff involved across the screening pathway. In addition to updates from the Programme there are sessions on quality improvement, clinical care, laboratory developments, training and education and regional feedback. Feedback shows that the open forum session is particularly valued and it is helpful for delegates to prepare questions and bring examples of good practice to share. Sessions planned in 2012 are:

West Midlands - 18 January 2012
London - 31 January 2012
Yorkshire & the Humber - 9 February 2012
SW England - 29 February 2012
East of England - 14 March 2012

For more information and to book your place contact: haemscreening@kcl.ac.uk

Laboratory updates on website

A section has been created on the website to give developments and updates for antenatal and newborn laboratories.

Standards on website

The second edition of the Programme Standards is now available.

Circulate next issue January 2012

A detailed update from the programme will be available in early January.

NHS Newborn Blood Spot Screening Programme

FootPrint newsletter

FootPrint is a quarterly update on all of the Programme Centre's activities. The newsletter aims to improve communication with healthcare professionals involved in newborn blood spot screening programmes and strengthen public engagement in the programmes across the UK. This issue features a report on incidents and serious incidents that were reported to the Programme Centre between April and September 2011, an update on the recent consultations, and a new screening story from a man who has grown up living with congenital hypothyroidism.

» Read the December issue (past issues are also available)

Newborn blood spot card review

The Newborn Blood Spot Card Review Consultation Report is now available. This report gives an overview of the responses to the recent consultation and recommended revisions for further consideration.

Repeat testing for congenital hypothyroidism (CHT) in preterm babies

Changes to the repeat testing for CHT in preterm babies have been agreed. An implementation date will be set and until that time the existing policy of repeat testing when the baby reaches the equivalent of 36 weeks gestational age remains. More information is available on the CHT Preterm Consultation page.

NHS Newborn Hearing Screening Programme (NHSP)

Targeted follow up

Targeted follow up from services has been under discussion for some time. NHSP published recommendations for changes in targeted follow up procedures. The recommendations and evidence for the proposed changes is available for consultation on the NHSP website until 9 January 2012. A response to the consultation and recommendations for future practice will be made available in February 2012.

NHSP is concerned with babies who either do not complete newborn hearing screening or who for whom ongoing audiological monitoring is recommended because of the presence of one or more risk factors. The first opportunity after the screening period at which assessment can reliably and readily be carried out is around eight months of age.

During the targeted follow up screen of the combined risk factor and incomplete screened groups, 147 children out of 115411 have been identified with a permanent childhood hearing loss. It has been deduced that 125 of these children were identified as a direct result of the referral for targeted follow up. Follow up of the well baby group could potentially identify 18 babies each year, though this would increase the overall screen refer rate by 1.45%. Including NICU babies would further increase the refer rate to 3.73%.

Screener eLearning Module

Currently there are no qualifications open to non-professional screeners working in the Newborn Hearing Screening Programme (NHSP) and the Abdominal Aortic Aneurism (AAA) NSC programmes. We are in the process of developing a new qualification for non-professional screeners within the Qualification Credit Framework (QCF) to enable recognition of their skills and achievements.

QCF qualifications are made up of a number of units which vary in level and size. It is proposed that the NHSP qualification will be at a level 3 and comprise of 3 generic and 4 NHSP specific units. A productive meeting took place at the end of November 2011 with NHSP Local Manager clinical assessors. The proposed units were considered to be comprehensive and complete and a decisive way forward regarding a standardised assessment process was agreed.

Annual report

The 2010-11 annual report is now available. A particular highlight was the development of the Key Performance Indicators and achieving the comparative coverage and uptake across England at 98.3%. Each year the programme publishes a plan so that you can know what our priorities are for the year ahead.

NHS Newborn and Infant Physical Examination (NIPE) Screening Programme

Developments in IT

NIPE's Screening Management And Reporting Tools (SMART) IT system continues to be generally well received by pilot sites, and the NIPE Programme and Northgate Information Solutions continue to learn valuable lessons in site implementation that will inform the rollout process (pending approval).

The full list of sites that are now "live" are: Royal Derby Hospital, Arrowe Park Hospital, Warrington Hospital, Diana, Princess of Wales Hospital - Grimsby, Scunthorpe General Hospital, Hull Royal Infirmary, St. Mary's Manchester Central Hospital, Royal Sussex County Hospital - Brighton, Princess Royal Hospital - Hayward's Heath, St James University Hospital Leeds, Leeds General Infirmary, Harrogate District Hospital, St. Thomas' Hospital - London, Macclesfield District General Hospital, University Hospital - Lewisham, Chesterfield Royal Hospital, and the Royal Cornwall Hospital. Kings College Hospital went live on 7 December with South London Healthcare Trust (Queen Elizabeth, Princess Royal, and Queen Mary's hospitals) going live on 12 December.

New NIPE Standards on Detection of Congenital Heart Defects

The first meeting of experts on congenital heart defects was held on 29 November to consider any revisions of the current 2008 NIPE Standards on screening for congenital heart defects that may be needed. The focus of the meeting was the congenital heart defects care pathway, the timeliness of examination, managing antenatal findings and the implications of a possible addition of pulse oximetry. We plan to publish new draft standards for national consultation in the next few months.

Recruitment of Expert Competency and Audit Leads for DDH

A focus of the NIPE Programme is the promotion of improvements and consistency in the newborn and physical examinations including DDH. Over the last two years, the Programme has brought together a small group of expert orthopaedic surgeons, radiologists and sonographers with the aim of recommending a screening pathway, an ultrasound examination protocol and a NIPE ultrasound report form. The Programme is now undertaking the next stage in this process by recruiting a core group of individuals to assist in the promotion of high standards of performance in the ultrasound examination. This is being done through the establishment of a nationwide system of competency assessment and the recruitment of audit leads.

English National Screening Programme for Diabetic Retinopathy

Changes to the diabetic retinopathy screening pathway were ratified in November by both the ENSPDR Programme Advisory Committee and the UK National Screening Committee. These changes will be implemented during 2012-13 in preparation for the forthcoming national commissioning of the screening programme based on a single service specification.

The national programme's External Quality Assurance (EQA) visits to local screening programmes have restarted in earnest. EQA visits were temporarily halted in June 2010 while the national programme developed new guidance and protocols to make the visit process more clearly focused on delivering national quality standards and a good patient experience. A total of five visits have already taken place and the feedback has been overwhelmingly positive.

The national programme held four workshops for local programme managers during October and November at various venues across England. A total of 88 delegates from 69 programmes attended the interactive workshops and were able to learn from each other in discussions of issues including the role of the programme manager and aspects of failsafe.

The programme's 2010-11 Annual Report has been published. During 2010-11, the number of people with diabetes identified by GP practices in England increased by more than 120,000 to nearly 2.5 million. Nearly 2.3 million people were offered screening and nearly 1.8 million people attended appointments.

NHS Abdominal Aortic Aneurysm (AAA) Screening Programme

The national roll-out of AAA screening remains on track. Four new local programmes - Norfolk; Coventry and Warwickshire; West Yorkshire; Bristol, Bath and Weston - have already rolled out during Phase 3, the largest phase of national implementation. Another 15 Phase 3 programmes are set to roll out by April 2012, by which time AAA screening will cover approximately 80% of England. Nine Phase 4 programmes will complete the national roll-out by the end of 2012-13.

The national programme and local programme offices were inundated with thousands of calls and emails following a Daily Mail article on 15 November that featured an AAA screening success story. More than 2,000 people visited the national programme website that day - 10 times more than usual - and thousands of men over 65 self-referred for screening across England as a result of the coverage.

AAA screening pioneer Alan Scott received a Lifetime Achievement Award from the Vascular Society of Great Britain and Ireland (VSGBI) at its 2011 Annual Scientific Meeting in Edinburgh in November. Alan helped to prove the merits of aneurysm screening in the largest ever randomised trial, the Multicentre Aneurysm Screening Study (MASS) and worked closely with the UKNSC and the Department of Health to begin planning the implementation of the programme.

The 2010-11 Annual Report is now available. More than 37,000 screening tests were carried out during the year and the 1,000th aneurysm was detected since the start of the national programme in 2009.