Screening Matters Issue 4, September - October 2011

Welcome to the fourth edition of screening matters.

Screening has been much in the headlines this past month. The NHS AAA Screening Programme has embarked on the biggest phase of its national implementation, Phase 3, which will see its reach double - from 40% to 80% of England - by April 2012. The Secretary of State for Health, Andrew Lansley, launched Phase 3 at Leicester Royal Infirmary where he met screening staff and patients. Mr Lansley, who emphasised the Government's commitment to achieving full implementation of AAA screening throughout England by March 2013, said: "Screening saves lives and improves the health of the nation - by spotting an aneurysm early, it can be monitored, prevented from getting worse and treated if necessary, saving the lives of thousands of older men." See the AAA website for the full story.

The national cancer director of the English programmes has announced (in a letter to the BMJ) that there is to be a review of the benefits and harms of the breast cancer programme and set up an independent group to develop the information to the public that supports people making the right choice for them. We look forward to reading the outcome of the review and if necessary developing policy recommendations.

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

Website improvements

The UK Screening Portal and English screening programme websites were upgraded at the start of October to improve their performance and security, as well as making them easier to navigate. They will also now work better for anyone using assistive technology, such as screen readers. In particular, the search function is now massively faster.

Current policy consultations:

• Asymptomatic bacteriuria (ends 16 December 2011)
• Autism (ends 16 January 2012)
• Rubella susceptibility in pregnancy (ends 6 January 2012)

New consultations due to start soon:

• Duchenne Muscular Dystrophy 

Recently closed consultations:

• Familial Hypercholesterolaemia screening in adults

This review and any comments received will be considered at the next UK NSC meeting. This takes place in November and information on the outcomes will be circulated to stakeholders following the meeting.

National Audit 2010-11

Each of the nine antenatal and newborn regional screening teams (England) provides an annual report of education activity in accordance with their service level agreements with the UK NSC. The reports for 2010-11 are coming in now and initial analysis shows a sustained commitment to screening education across the country. Trust screening co-ordinators and regional teams are to be commended for their efforts in gathering this data year after year. The reports will be analysed as a whole and summarised in one report to be presented to the Fetal, Maternal and Child Health (FMCH) sub group of the UK NSC. Specific data within the report is shared with the Care Quality Commission (CQC) relating to: mandatory screening education, screening induction for new staff, co-ordination of screening and audit of screening education.

QA Day for Trust Co-ordinators

The UK NSC is hosting a meeting for all acute Trust Screening Co-ordinators (antenatal/newborn) on 26 January 2012 in Birmingham. The agenda for the day will involve updates from the national screening programme directors, cross programme UK NSC team members and interactive workshops related to: serious incidents, key performance indicators and peer review visits. Invitations will be sent out via the Regional Teams.

Health Screening Module

The Masters level Health Screening Module at Warwick Medical School which is run in collaboration with the UK NSC is due to start on 5 December this year. There are still a few places left for individuals interested in:

• Understanding and applying criteria used to evaluate whether a screening programme should be introduced, and the rationale behind such criteria
• Calculate performance metrics including sensitivity and specificity from basic data about a screening programme, and use the data to assess if screening tests meet the criteria for implementation
• Identify the key ethical issues associated with screening
• Understand and assess quality assurance, spanning structure, process, and outcome for each stage of a screening programme
• Improving their understanding of major national public health programmes

Specification for the development of an e-Resource to support learning from Serious Incidents (SIs)

A specification for the development for an interactive eLearning module to demonstrated learning from SIs has recently been circulated widely across health and education sectors.  The closing date for bids is 14 November 2011.

» Download the specification

For more information on any of the above please contact Jo Harcombe.

• The QA pilots are still in progress and are going well. They are in the final stages of completion with one more visit to take place at the end of November. Four out of five of the approaches have been carried out to date and the general consensus at this stage is that a mixture of each of the various approaches may be used in the final model. As the process continues the QA team are distilling down what core evidence will be required and what the core questions the QA team should be asking within their respective roles to use 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
• The commissioning frameworks for all antenatal and newborn screening programmes and that for the screening elements of child health record departments have been revised to reflect new standards and recently issued programme specific guidance
• A Serious Incident Toolkit is in the process of development. 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 to bring it all together into one place for all users to refer to for up-to-date resources and information. The site will contain some interactive content, links to any other relevant areas of reference and all documentation related to serious incidents. It is planned for the resource to go live as soon as possible
• 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 screening "incidents". The proposed outcomes of the day will be in the form of a paper describing the principles and guidance to distinguish between the various types of screening incidents which will be publicised on the SI Toolkit once confirmed

» Download the revised commissioning frameworks

Blood Spot Messaging

A successful Blood Spot Messaging pilot was implemented in Leeds and Bradford last year to deliver blood spot screening results electronically to Child Health Systems. Following feedback from the pilot areas and suppliers, this project is in the planning stage for a wider roll out across Yorkshire & Humber and, subsequently, the whole of England.

Key Performance Indicators (KPIs)

The submission and review periods for Q1 2011-12 have now closed. There has been an excellent volume of returns for this quarter, with even fewer 'null' returning organisations across every KPI. Data quality also appears to be improving acoss all KPIs, but work still needs to be done to ensure submissions are correct at the first attempt!

The latest version of the KPI Guidance document (V1.7) is now available. The Q2 2011-12 KPI data submission template will be made available for use at the same web address from 31/10/2011.

NHS Infectious Diseases in Pregnancy Screening (IDPS) Programme

A Programme Update, which summarises all of the latest programme news, was sent round recently. Here is a summary of the main programme developments:

• We have now published the IDPS minimum data fields for the laboratory booking request forms/electronic requesting (download the covering letter and the final list of minimum data fields)
• The IDPS eLearning module is now live. The resource aims to help support the implementation of the new programme standards
• The Health Protection Agency (HPA) has published the national data for 2010
• A Map of Medicine pathway for the immunisation of babies born to hepatitis B positive mothers is now available online. This pathway describes the process for immunising babies born to hepatitis B positive mothers. This compliments the management of hepatitis B in pregnancy and birth pathway

NHS Fetal Anomaly Screening Programme (FASP)

We have developed a number of online resources to support health professionals and increase their knowledge of the many aspects of Down's syndrome and Fetal Anomaly screening. These resources are now available to use within a resource portal, which was developed and launched in the summer of 2011.

Having a mid-pregnancy ultrasound scan - pictorial leaflet

A pictorial leaflet has been developed in collaboration with the Elfrida Society to provide information on the mid pregnancy ultrasound scan for women and their partners. The leaflet is aimed specifically at people with learning difficulties.

Two copies of this leaflet will be sent to every Local Screening Coordinator in England in November 2011. This leaflet follows the successful release of the Testing for Down's syndrome in Pregnancy pictorial leaflet, which was published in 2010 and is also available to order from the NHS FASP.

Screening for Edward's syndrome and Patau's syndrome in the first trimester of pregnancy

An NHS FASP national policy group has been established to explore the potential benefits for a first trimester Patau's syndrome (T13) and Edward's syndrome (T18) screening programme in pregnancy. Currently, these trisomies are screened for during the mid pregnancy fetal anomaly scan, but there is evidence to suggest that earlier screening provides a better detection rate and extending maternal opportunities for reproductive choice.

A consultation will be undertaken from 7 November to 12 December on the NHS FASP website to obtain comments about the proposed policy from health professionals and members of the public.

NHS FASP & RCOG Joint Working Group for amniocentesis and chorionic villus sampling audit pilot project

The primary aim of this initiative is to produce a national miscarriage rate using prospective data from hospital Trusts about the number of unaffected fetal losses following either amniocentesis or chorionic villus sampling (CVS) procedures in England.

Recently, a draft 21 field dataset was trialled amongst 34 hospital Trusts who undertake either one or both procedures over a 5 week period. During this time, 315 completed audit forms were returned for analysis. Suggestions from clinicians have helped refine the data fields and ideas about future use. The next step is to implement an electronic version of the form country-wide to all hospital Trusts and start project two which will explore the dataset for obtaining the outcomes of women who had invasive testing.

For all enquiries to NHS FASP please email: enquiries@ansnsc.co.uk

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

Children and young people with haemoglobin disorders

The paediatric peer review highlighted concerns about babies with significant haemoglobinopathies entering the care pathway in a timely manner. The report, by the West Midlands Quality Review Service found that whilst five centres (Alder Hey Children's NHS Foundation Trust, Royal London Hospital (Barts & London NHS Trust), Central Manchester University Hospital NHS FT and Royal Manchester Childrens Hospital , QE Hospital, Woolwich and University College London Hospitals NHS FT and Whittington Hospital NHS Trust) achieved all five screening programme standards around timeliness of entry to the care pathway, fourteen centres did not. The five standards cover timely communication, referral, confirmation of diagnosis, failsafe systems and registration. The SCT Programme is working with the East Midlands Commissioning Project to identify designated centres for the timely referral of screen positive babies thus acting as a failsafe.

» Download the report

Key Performance Indicators

UK NSC KPIs version 1.7 was published in October 2011. At present, most maternity systems do not support the recording or transfer of screening results from antenatal laboratory however it is expected that the coverage (ST1) and timeliness (ST2) indicators could be collected using Maternity and Children's Data Set whose implementation is currently awaiting Cabinet approval.

Standardising HbA2 analysis

Accurate and consistent laboratory analysis is essential if the screening programme is to report correct results. Work during the year uncovered the issue of biases between different analytical platforms for HbA2 and this is now being addressed by the international bodies of the International Federation of Clinical Chemistry and Laboratory Medicine, the International Council for Standardization in Haematology and the World Health Organisation (WHO) who have recognised the problem and are working with manufacturers. An international standard is being developed and the Programme is leading the work to produce a statement - driven by the UK NEQAS report - on the use of the current WHO standard.

The Programme's laboratory advisors' subgroup is issuing a statement next week to haematology laboratories to make them aware of the issue and to advise that if they are considering replacing equipment they should review all the available evidence.

Latest publications

• The SCT annual report 2010-11 is now available and a few printed copies are available for those who do not have access to the internet
• The 2nd edition of the Programme Standards has just been published. The standards were consulted on during the year and were revised and updated accordingly. They will be available on the SCT website next week

NHS Newborn Blood Spot Screening Programme

Consultation on revised Guidelines for Newborn Blood Spot Sampling

The UK Newborn Screening Programme Centre has reviewed the Guidelines for Newborn Blood Spot Sampling, and welcomes comments from interested parties. Please see the Guidelines page for more details.

» Read more

Standards for offer, coverage and timely identification of untested babies

For information on our standards consultation, a summary of changes and the response from our Blood Spot Advisory Group visit our Standards page.

» Read more

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 via the CHT Preterm Consultation page.

» Read more

Data collection and performance analysis report 2009-2010

The Newborn Blood Spot Screening Programme's Data Collection and Performance Analysis Report 2009-2010 has been published and is available to download from our website.

» Read more

NHS Newborn Hearing Screening Programme (NHSP)

The two NHSP key performance indicators cover screen coverage and the assessment of referred babies.

Following the introduction of KPI 2 it became evident that many services are not able to meet the current target of 90% of referred babies receiving audiological assessment within 4 weeks of the decision that referral for assessment is required or by 44 weeks gestational age.

In discussion with the UK NSC it was suggested that a phased approach to implementing meeting KPI 2 might be more appropriate. NHSP has devised an online consultation for services setting out the new phased proposal and a relevant questionnaire. Already we have received a large number of responses to the consultation which will finish at the end of this month.

» Take part in the survey

NHS Newborn and Infant Physical Examination (NIPE) Screening Programme

NIPE Clinical Examination Training Working

The first meeting of the expert NIPE Clinical Examination Training Working Group was held on 28 September. The group reviewed the current training undertaken by the members of the group and began the planning to build on that experience and develop national support materials for clinical training of the four screening components of the newborn and infant examinations. Further meetings are planned for January and March 2012.

For more than a year, the NIPE Ultrasound Protocol and Ultrasound Training expert group on DDH has been meeting with the aim of improving the standards of ultrasonography for DDH, and to facilitate an increase in the number of those trained to perform it. To date, the group has devised draft curriculum guidance for training for ultrasonography of DDH and developed a draft standardised referral form. The remaining work is to clarify the current NIPE protocol such that what we are screening for, and more precisely define the timeframes of ultrasonography screening.

Review of UK NSC NIPE Standards

The UK NSC NIPE Standards were published in 2008, and are currently being reviewed given that it is three years since the standards were first devised, and because the standards are out of date in a number of areas. The first meeting of the NIPE Standards Review Group - Congenital Heart Defects is scheduled for 29 November 2011. The Ultrasound Protocol and Ultrasound Training Group for DDH also functions as an NSC NIPE Standards' review group for hips.

English National Screening Programme for Diabetic Retinopathy

There is currently considerable variation in the screening pathway between local retinal screening programmes in England. The national programme has therefore embarked on a major project to define and describe a new common pathway that all local programmes will be able to implement and deliver in preparation for a new single service specification.

Work is also under way to bring about a renewed sense of identity for everyone involved in retinal screening as part of a unified national programme. This will include a new national programme name that will be launched in 2012 and can be adopted by all local programmes. Staff, patients and key stakeholders such as Diabetes UK have been consulted on possible names and the aim will be to agree an identity that is also meaningful and recognisable to the public. To coincide with the new name, a revamped national programme website and new national patient information leaflets will be also be launched.

Developments in training and education include the creation of a new National Grading College. Graders who have demonstrated consistently good performance are being invited to join this College. The College will provide:

• A means of grading images to populate test and training sets
• A means of benchmarking grading between programmes
• Assistance to programmes with grading problems

Work continues on the GP2DRS project - the electronic solution which will improve the transfer of patient details between GPs’ IT systems and local diabetic retinopathy screening programmes. Phase 1 of the project has been completed with the successful exchange of data between a central repository and MicroTest, one of the GP systems. An interface has also been developed that will provide programmes with web-based access to data from the repository. Plans are well under way to implement this solution with the other major GP clinical system providers.

NHS Abdominal Aortic Aneurysm (AAA) Screening Programme

The largest phase of the national implementation of AAA screening has now begun. Phase 3, which began with the ‘go-live' of the Norfolk programme on 12 October, will involve a total of 19 new local programmes implementing screening before April 2012.

This will leave approximately 20% of England remaining to roll out in Phase 4, the final phase of national implementation which will be completed by March 2013. The national programme recently held an early planning meeting for Phase 4 programmes in Leicester which helped to identify issues that will need to be addressed to ensure successful implementation.

Work is continuing on the development of a patient decision aid website to help men make informed decisions about AAA screening. The national programme is developing this resource in conjunction with the NHS Shared Decision Making Programme and the final website will include graphical representations of risk created by Cambridge University statistician Professor David Spiegelhalter.

An important recent development for AAA screening was the introduction of ‘Live Messaging'. This is a live link with the Connecting for Health GP IT system and means that changes to screening cohort details can now be instantly updated for local programmes in the national programme's SMaRT IT system.