Standards

• 1. UK Standards
• 2. Developing policies and standards
• 3. Consultation on standards for offer, coverage and timely identification of untested babies
• 4. Changes to current policy: Repeat testing for CHT in preterm infants
• 5. Revised standards and guidelines August 2008
• 6. Policies and standards April 2005
• 7. Standards for performance management of newborn blood spot screening pilot project report September 2004
• 8. Proposed standards and policies for newborn blood spot screening June 2004
• 9. Overview of the UKNSPC standards

1. UK Standards

The Programme Centre aims to support health professionals in delivering a high quality blood spot screening programme. The process through which we have conducted this work is described in more detail in the developing policies and standards section, below.

This has involved the development of:

• policies and standards
  An updated version of the UK newborn screening blood spot standards August 2008 is available. These standards replace standards one to six in the Policies and standards for newborn blood spot screening, April 2005.
• structures for the effective delivery of newborn screening
• resources for parents
• resources for health professionals

2. Developing policies and standards

Central to the development of policies are standards that underpin the performance management of the blood spot screening programme. Their purpose is to assure the quality of the screening process and ensure that babies who may have one of the conditions for which screening is offered receive timely medical treatment.

The overall approach has been to develop standards by setting up expert groups, working in partnership, to review the evidence and discuss current best practice. Each group comprised laboratory and specialist and non specialist clinical staff and parent organisations, and, where appropriate, international experts. First drafts of the policies and standards were sent for limited consultation and feedback to expert group members and some professional bodies. Comments received from these preliminary consultations were incorporated in the draft versions of the policies and standards, and adapted in the light of conclusions reached by other expert groups.

These standards were piloted in four different geographical areas of England, and also in Northern Ireland. This involved the setting up of local pilot steering groups, bringing together representatives of those delivering newborn blood spot screening. 

The data collected from the pilots in February – March 2004 enabled the Programme Centre to assess whether the draft standards were achievable, measurable and described without ambiguities. The analysis of results and feedback from members of the pilot steering groups enabled appropriate refinements to be made.

The draft versions of the policies and standards were disseminated for consultation in August 2004. Particular thanks are extended to those who provided feedback and enabled the Programme Centre to improve upon the standards and policies to produce this version.

The first policies and standards were launched in December 2004 and published in April 2005.

The April 2005 standards were updated and widely disseminated for consultation in February 2008. Following the consultation further revisions were made and the standards were presented and ratified at the Blood Spot Services Advisory Group (BSAG) meeting held 22nd July 2008.

These standards, found below, (August 2008) replace standards one to six in the Policies and standards for newborn blood spot screening, April 2005 (PDF file 3.54MB).

3. Consultation on standards for offer, coverage and timely identification of untested babies

In January 2011, the Programme Centre consulted stakeholders on a revision of the standards for 'offer', timely identification of untested babies' and 'coverage'. In addition, a new standard to monitor coverage in babies that move into a PCT up to one year of age was proposed.

These revised standards were developed jointly with the NHS Sickle Cell and Thalassaemia Screening Programme. The standards were updated ahead of the schedule for review of the other standards, to come into line with the NSC key performance indicators that added an effective timeframe for screening in the performance measure and in light of performance data collected in 2008-9. In 2008-9 numbers of untested babies recorded on a child health information systems (CHIS) were reported as close approximation of measurement of 'offer'. Responses indicated 'offer' was often assumed and the child health records departments (CHRDs) were unable to distinguish between a baby that has not been offered screening and one that has been offered but not tested.

The revised draft standards were presented to the Blood Services Advisory Group (BSAG) in January and again in August 2011. A summary of BSAG response is presented in the table below.

Learn about the consultation

Summary of changes

4. Changes to current policy: Repeat testing for CHT in preterm infants

For more information, please visit the 'Repeat testing for CHT in preterm infants' policy page

5. Revised standards and guidelines August 2008

Central to the development of policies are standards that underpin the performance management of the blood spot screening programme. Their purpose is to assure the quality of the screening process and ensure that babies who may have one of the conditions for which screening is offered receive timely medical treatment.

The April 2005 standards were updated and widely disseminated for consultation in February 2008. Following the consultation further revisions were made and the standards were presented and ratified at the Blood Spot Services Advisory Group (BSAG) meeting held 22nd July 2008.

6. Policies and standards April 2005

This document sets out the policy position on each aspect of newborn blood spot screening and the standards to be implemented across the UK. It is intended to provide the key policy information and will be a useful resource for a variety of health professionals but of particular benefit to Directors of Public Health at Strategic Health Authority (or Health Board) and Primary Care Trust level, Departmental Screening Leads, Laboratory Directors, Heads of Midwifery, Heads of Midwifery Schools, Child Health Records Departments, and Specialist Commissioners. It concentrates on screening for phenylketonuria and congenital hypothyroidism.

7. Standards for performance management of newborn blood spot screening pilot project report September 2004

The pilots in East Anglia, South East Thames and Northern Ireland enabled the Programme Centre to assess whether the draft standards were achievable, measurable and described without ambiguities. The analysis of results and feedback from members of the pilot steering groups enabled appropriate refinements to be made.

8. Proposed standards and policies for newborn blood spot screening June 2004

These standards were developed by ten expert groups, working in partnership, to review the evidence and discuss current best practice. Each group comprised laboratory and specialist and non specialist clinical staff and parent organisations, and, where appropriate, international experts. First drafts of the policies and standards were sent for limited consultation and feedback to expert group members and some professional bodies. Comments received from these preliminary consultations were incorporated in the proposals published here, which were also adapted in the light of conclusions reached by other expert groups.

9. Overview of the UKNSPC standards

Standards for the newborn blood spot programme are presented in a number of different documents; the aim of this table is to provide a contemporary list of all relevant standards and to signpost towards additional information. Stakeholders are advised to visit this page regularly to make sure they are viewing the most up-to-date version.