Screening Matters Issue 7, March-April 2012

Welcome to the March/April newsletter to update on the work of the UK NSC. These newsletters have now been going for over a year and I really hope you find them useful. We have created a short 1 minute survey to gather feedback and we would be extremely grateful if you'd fill it in once you've read this edition.

» Access the survey here (it will open in a separate window)

There has been significant progress in Quality Assurance (QA) – the programme to assess the most effective model of screening QA has come to an end and the evaluation report is in draft and will be published by summer.

I am delighted to be able to tell you that we have made the following appointments for the new QA leads: Madeleine Johnson - North, Jane Woodland - Midlands and East, Morag Armer - South. These are one year secondments and will start as soon as possible. In addition the team will be joined by Alison Frater who will be leading on some cross cutting initiatives for the UK NSC and will lead on QA for London

The new QA leads will work with our regional and national QA teams to develop our approach to QA as we move into new structures.

We have the go ahead to procure an IT system to provide a failsafe between newborn laboratories and the maternity services. Currently the baby has a heel prick at 5-8 days and the card is posted to the lab. Identifying children who have missed the test relied on checks of population coverage via child health record departments. This should happen roughly around day 17. However, the UK Newborn Screening Programme Centre (responsible for the blood spot programme) recommend that babies with these conditions be enrolled in care by 21 days. This timescale allows very little time to find 'missing babies'. And in some cases the mother and baby have moved address.

The aim of the new IT system is to let the maternity services know which babies have been tested and blood spot cards have arrived in the lab and which are missing or need another sample. When piloted we found it identified several babies who had not been tested but the lab, CHD and maternity services were not aware. We aim to procure the IT system by summer and roll out through to the end of this financial year.

As always we are busy and anyone wanting to get involved, contact me via the website email form.

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

Map of Medicine

The Map of Medicine now requires registration to view the care maps on NHS Evidence. Registration is free, extremely quick and you'll only need to do it once, so don't let it put you off. PDF versions of the care maps can still be downloaded without registration from the individual screening programme websites.

» Access the Map of Medicine care maps through NHS Evidence

The UK NSC has over a hundred screening policies on conditions ranging from anaemia in pregnancy to vision in adults. These are reviewed on a three-year cycle. Full information on the policy review process is available.

Current policy consultations

These are the policies currently being consulted on:

• Kernicterus (consultation ends on 23 June)
• Scoliosis (consultation ends on 23 June)

New consultations due to start soon

• Tays Sachs
• Familial Dysautonomia
• Canavan Disease
• Fetomaternal alloimmune thrombocytopenia

Annual education audit

Each of the 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. These regional reports have been collated and summarised into an annual national report which presents a summary of the education activity undertaken within the regions of England for the reporting year April 2010 – March 2011, together with recommendations for priorities and actions for 2011-12. Significant achievements and challenges from the 2010-11 report include:

• The number of trusts in England with a Local Screening Co-ordinator has increased for a seventh consecutive year: 98% of trusts have a LCO in post compared with 97% in the previous reporting year
• The number of trusts providing screening in their mandatory education programmes has increased: 89% of trusts compared with 82% in the last reporting year
• There has been an increase in the number of trusts offering antenatal and newborn screening as part of their induction programme: 74% of trusts compared to 65% in the last reporting period
• There has been an increase in the number of joint antenatal/newborn coordinator posts from 64% in 2009-10 to 67% in 2010-11
• There has been an increase in the number of participants attending education and training events offered by regional teams from 5,806 in the last reporting year to 7,764 in 2010/11, an increase of 1,958 participants
• While midwives remain the most frequent attendees at regional events, there has been an increase in attendance by laboratory staff, sonographers, primary care staff, managers and counsellors
• Challenges exist in fulfilling screening co-ordinator roles due to the increasing number of national and programme specific initiatives and the increasing complexity and demands of their role
• Pressure on resources has affected staffing across some regional teams
• Challenges remain in engaging with primary care practitioners regarding screening

Identified actions for 2012-13 include:

• Support professionals as they continue work to meet national programme centre standards
• Continue to support and develop work on quality assurance, including the development of specific training around the management and avoidance of serious screening incidents
• Support primary care engagement; explore cross programme approaches based on the recommendations of the UK NSC primary care engagement report
• Extend the 'reach' of screening education
• Consolidate the increased inclusion of screening education in mandatory training programmes
• Promote use of existing educational resources, in particular the UK NSC e-Modules

A key feature of the UK NSC education and training strategy in the past reporting year has been to strengthen cross-programme working.

Cross-programme achievements at national level in 2011-12 include:

• Shared education objectives between programmes
• Development of four eLearning modules; 2 UK NSC, 1 in collaboration with DH/RCPCH and 1 in collaboration with the BMJ on-line learning group
• Development of QA and serious incidents education strategy
• Laboratory staff; development of a set of common screening education objectives developed in collaboration with the Modernising Scientific Careers team
• Higher education screening module
• Screening master classes
• E-Resource for 'learning from serious incidents'

For more information on any of the above please contact the National Education Lead, Jo Harcombe.

QA Pilot Process

The QA pilots are now complete and the final evaluation report is awaited. Criteria and weighting workshops have taken place with the aim of identifying the preferred model for QA of the antenatal and newborn screening programmes and the results of these will be fed into the final report. Once available the QA team and UK NSC representatives will discuss the report findings and the implications for the final chosen model which is to be implemented from April 2013. The report will be shared with all relevant stakeholders once finalised.

In addition to the work with the evaluation team the QA team are currently working with colleagues to improve the various tools and documents which were used in the pilots. The amended tools will be discussed with programme representatives at a workshop in the spring to ensure all necessary information is included and the key areas for QA in each programme are adequately covered. It is important to ensure that any final tools used are both fit for purpose and proportionate and with this in mind the QA team hope to identify a new pilot site to test out the final version of the tools and supporting documents later this year.

Although a pilot process, the sites involved were informally asked if they had instigated any changes as a result of the process. Feedback received indicated that whilst the process had been time consuming benefits had been identified and suggestions for service improvements had been useful. In many cases these suggestions were being considered and / or implemented.

Commissioning Frameworks

A commissioning framework for Screening Laboratories is in development. The document has been out to consultation and responses are being collated to ensure that standard recommendations, criteria and programme specific information for the individual programmes are included. Once finalised the framework will be added to the suite of documents on the website and shared with stakeholders.

Serious Incident Toolkit

Since the launch of the Serious Incident Toolkit in January, almost 2,700 people have used it and accessed it over 4,300 times in total. The most popular section has been "Incidents & Serious Incidents" – the content of which will be amended once the final SI report had been completed. The toolkit was initially developed to bring together the various pieces of information on SIs and how to manage them. The content will be reviewed in the near future, with special regard to the ongoing NHS transition process, in order to ensure that the toolkit is amended to reflect any necessary changes.

The QA team, Education Lead and Communications Lead are working collaboratively to ensure that the SI eLearning tool currently in development is consistent with and links to the toolkit. The resource is on schedule for delivery in June.

Development of an IM&T Strategy for UK NSC

The UK IM&T Strategy was last reviewed in 2009, this strategy is being reviewed and an updated IM&T Strategy will be published in the summer. This will reflect the changes in the NHS and the Health & Social Care Bill to meet the needs of screening in the future as we move to Public Health England. The following workstreams form integral elements of the new IM&T Strategy that will form reusable components of future IT programmes based on open IT standards and common IT platforms.

Blood Spot Failsafe solution

The procurement of the Blood Spot Failsafe has commenced. The OJEU advert will be placed in the first week of May and the process should take 10 weeks to identify a supplier to deliver the electronic solution between Maternity Units and Blood Spot Laboratories.

Demographics feeds for Blood Spot Laboratories

Blood Spot Laboratories do not have demographics feeds. This causes a significant issue in patient identification for the time critical process of processing babies Blood Spot Cards. This results in a manual process where NHS numbers and patient demographics are keyed into Lab systems on a daily basis (c 750,000 babies per year) with the subsequent issues of time delays, data quality issues through manual transcription errors.

The demographics pilot is due to be launched mid May at Great Ormond Street Hospital. This will be tested and evaluated for 6 weeks and, if successful, plans will be developed for Full National Roll Out.

Key Performance Indicators (KPIs)

The Q3 2011-12 KPI submission deadline has passed and this quarter it appears that all organisations required to submit data have done so and where they were unable to submit have been able to identify with us the reasons why they were unable to submit. This is excellent news in terms of understanding the completeness of the returns and also in building a robust database of KPI data.

Many thanks are offered to those who are engaged in this process and the hard work that goes into collecting and submitting good quality data in a timely manner.

The Q4 2011-12 submission template will be available from 1 May, with the period for sending data to the KPI analyst running from 1 - 30 June for those organisations not in an area where their Regional Teams collate their data. Areas which have central collection for their KPI data will be notified by their relevant Regional Teams as to their submission deadlines.

The UK NSC is looking to procure a web based KPI Reporting tool to automate the flow of data and reduce the burden of data collection on staff in the field. This system is currently out to tender and the solution should be available for the autumn for online KPI reporting.

If you need any more information, please contact James Walker.