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.
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
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.
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.
IT and Information
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.
Key updates from each of the English screening programmes.
NHS Infectious Diseases in Pregnancy Screening (IDPS) Programme
As part of the programme governance structure, last year we agreed that there would be specific groups set up to provide the programme with additional support and advice. If you have any issues that you feel we need to address please let us know. We have now got the dates for the next meetings of the following task groups:
» Contact the programme
Lab standards workshops
The lab workshops were held in March with over 130 delegates attending over 4 days. The evaluations were very positive and some comments from the events have included "I now understand what difference my role makes to women and babies" and "Have been doing this for a long time (screening for IDPS) but you can still learn something new".
The events were so successful that we are considering holding an annual event for lab leads. Further evaluation and examples of good practise from the events will shortly be available on the website.
» More information about the IDPS Programme
NHS Fetal Anomaly Screening Programme (FASP)
New information available to support parents and health professionals following a congenital anomaly diagnosis
The review of information to support parents and health professionals once a diagnosis of a congenital anomaly has been made and is now complete. This information includes leaflets covering the following conditions: Anencephaly, bilateral renal agenesis, serious congenital cardiac anomalies, congenital diaphragmatic hernia, cleft lip, exomphalos, gastroschisis, Trisomy 18, Trisomy 13, lethal skeletal dysplasia and spina bifida. Two copies of a book containing these leaflets are being sent to all ultrasound departments in England and they are also available online.
» View the resource
Development of an integrated clinical care pathway for the screening and diagnosis of CHD
In accordance with the on-going work within NHS FASP to develop clinical care pathways for the 11 conditions identified in the base menu of the 18+0 to 20+6 weeks fetal anomaly scan standards, work has begun on the cardiac pathway. A stakeholder event was held on 1 March 2012 in London with a wide range of stakeholders present, including clinicians, charities, support groups, parents and lay representation. The event was extremely well received and the draft pathway will be released for national consultation in the coming months.
FASP consultation on care pathways for Cleft lip - Now Open
As part of the task to develop care pathways for the 11 conditions NHS FASP has launched a consultation to discuss key elements of an integrated care pathway for cleft lip. The consultation will be open from 16 April to 11 May 2012.
» Access the consultation
NHS Linked Antenatal and Newborn Sickle Cell and Thalassaemia (SCT) Screening Programme
Dayglo Project wins award
Dayglo, the theatre project produced by Y touring with its strong sub plot about sickle cell has won the STEM Category of the National Science & Engineering Week Event Awards 2012. The Sickle Cell and Thalassaemia Screening Programme was one of the sponsors of the project and was closely involved in the development of key resources about sickle cell for it.
» Find out about the play, the vision for the project, the resources for schools and about Y Touring
Healthcare professional leaflet launched
The programme has launched an information leaflet for all healthcare professionals describing the linked antenatal and newborn screening programme for sickle cell and thalassaemia. Health care professionals are able to see where their role fits with the screening programme and patient pathway. The leaflet can be ordered from Harlow Press by calling 0191 496 9735 or emailing firstname.lastname@example.org
» Download the leaflet
Haemoglobinopathy Commissioning Guidelines launched
March saw the launch of the National Haemoglobinopathy Project commissioning guide – a series of documents to aid commissioners in providing quality care right from when a baby is diagnosed with a haemoglobin disorder. The aim is to ensure a seamless transition from screening to care and the guide provides a sound foundation for quality care which is essential for an effective and ethical screening programme.
» Download the guide
Protocol for reporting newborn screening results for sickle cell disease
Together with the Newborn Bloodspot Programme, the SCT Programme has developed a protocol aimed at clarifying reporting arrangements for newborn screening results: normal results.
» View the report
Specialist nurses – Roald Dahl project
At the RCN Congress in May, the SCT Programme will launch its report on the benefits of specialist nurses for sickle cell and for thalassaemia. Supported by the Roald Dahl Marvellous Children's Charity, the report is the culmination of a six month project exploring the benefits of specialist nurses in this field and the cost effectiveness of continuing or expanding the number of such posts. A link to the report will be included in the next Screening Matters.
NHS Newborn Blood Spot Screening Programme
FootPrint April 2012 - 10th anniversary edition
This special edition of FootPrint celebrates the Programme Centre's 10th anniversary. You can also read messages from screening colleagues and download a timeline of newborn screening milestones from our special anniversary section on our website.
» Download the FootPrint newsletter or find out more about the 10th anniversary
Data collection 2011-12
Annual data collection for Child Health Records Departments and Newborn Screening Laboratories for 2011-12 has closing dates for submission of the 30th June and 31st July 2012 respectively. Please ensure that a nominated individual is made responsible for data submission in each organisation and that you are informed of any problems which may prevent timely submission of your data so these can be resolved.
» Download the data collection templates and information
Changes to the current policy for CHT screening in preterm infants
The revised policy for CHT screening in preterm infants was implemented in all four UK countries on 1 April 2012. The revised policy is based on gestational age criteria of less than 32 weeks (less than or equal to 31+6 days) and repeat testing at 28 days postnatal age, counting date of birth as day 0, or discharge home, whichever is the sooner.
A range of education and training resources and a transition plan to support decommissioning the old policy and implementing the new are available electronically and in hard copy.
» Find out more
NHS Newborn Hearing Screening Programme (NHSP)
2012 Annual conference
As part of National Knowledge Week for Hearing, NHSP held their annual conference entitled "Adding Value: Improving Quality at Every Step of the Care pathway" on 28 March 2012. Over 200 delegates representing professionals from across the care pathway attended the conference and actively contributed through engagement in seminars, questions to the speaker panel, and enthusiastic networking. NHSP is grateful to all speakers, seminar leaders, staff and delegates for making 2012 the most successful conference thus far.
The presentations will shortly be available on the NHSP website.
NHS Newborn and Infant Physical Examination (NIPE) Screening Programme
Consultation on Revised NIPE Standards Postponed
In order to ensure consistency and provide a clear way forward, the NIPE Programme has decided to postpone the consultation on the revised NIPE Standards. The UK National Screening Committee (UKNSC) will be considering the value of the introduction of pulse oximetry for congenital heart defects as an addition to the clinical examination. In these circumstances, it was decided that a national consultation on the revised care pathways for congenital heart disease before a decision had been reached by the UKNSC would be unwise. As the four screening components form one group, carried out at the same time, the consultation on all components should take place concurrently. Therefore, it has been decided to delay the national consultation on all pathways and standards until the decision on pulse oximetry has been made by the UK NSC, and when the NIPE congenital heart defects' pathway and standards can reflect that decision.
NHS Diabetic Eye Screening Programme (DESP)
Implementation of new pathway and grading criteria
All local diabetic eye screening programmes will move over to a new common screening pathway ahead of the screening programme's transition to Public Health England in April 2013. A new national service specification for diabetic eye screening is being developed to reflect these pathway changes and local programmes will in future be commissioned against this specification.
In March, the NHS Diabetic Eye Screening Programme held four workshops for local clinical leads and programme managers across England to cover some of the key issues around the implementation of the new pathway and grading criteria. The workshops were very well attended and well received. Presentations from the workshops, along with a comprehensive pathway implementation manual and a list of nearly 100 questions and answers from the events have now been made available to programmes via the NHS DESP extranet. In addition, there are a total of 13 short online video clips in which National Programme Director Prof Peter Scanlon and National QA Director Dr Sue Cohen address the key issues.
» View the pathway and grading criteria information, including videos, on the DESP website (login required)
Working with Diabetes UK
Richard Lane OBE, President of Diabetes UK, gave a ringing endorsement to diabetic eye screening when he visited the NHS DESP stand at the annual Diabetes UK Professional Conference in Glasgow in March. Mr Lane, who has himself undergone successful eye laser treatment for screen-detected diabetic eye disease, will be featured in the Spring 2012 edition of the NHS DESP newsletter.
NHS DESP is now liaising with Diabetes UK to raise awareness of the charity's 15 Healthcare Essentials campaign. The campaign seeks to inform people with diabetes of all the health checks and services that they should receive. The national programme is looking into the practicalities of patients accessing 15 Healthcare Essentials leaflets at screening clinics.
New screening invitation leaflet
The new NHS DESP invitation leaflet has now been printed and is available for local programmes to order. The leaflet is being printed and distributed to local programmes by Harlow Printing. This company also prints and distributes patient information materials for antenatal and newborn screening programmes. NHS DESP invitation letter templates have also been revised to coincide with the new leaflet.
» Download the new leaflet
NHS Abdominal Aortic Aneurysm (AAA) Screening Programme
National implementation draws near to completion
Phase 3 – the largest phase of the NHS AAA Screening Programme's national implementation – is complete. The AAA programme now covers approximately 75% of England. The remainder of the country will roll out screening during Phase 4, the final national implementation phase, between October 2012 and March 2013.
Uptake tops 80% in first 3 years
Provisional data extracted from the NHS AAA Screening Programme's national IT system shows that just over four out of every five men invited for screening took up the offer during the national programme's first three years of operation (April 2009 to March 2012). During that time, well over 150,000 men were screened, just under 2,500 aneurysms were detected for the first time and 141 men were referred to vascular surgeons to discuss treatment options.
The first ever UK-wide audit of elective AAA repair surgery revealed a dramatic improvement in outcomes for patients in recent years. The National Vascular Database audit of elective AAA repairs revealed an overall mortality rate for elective infra renal AAA procedures of just 2.4%. The NHS AAA Screening Programme has worked closely with the Vascular Society of Great Britain and Ireland on the development of vascular networks and quality improvement processes that have helped to drive this improvement in patient outcomes.
International AAA screening research
The NHS AAA Screening Programme hosted an international AAA screening research meeting at the Charing Cross International Symposium on 15 April when there were presentations on AAA screening from colleagues in Sweden, Denmark, Australia, Finland, New Zealand, Italy and Norway.