Patient Advocacy for Newborn Screening Group (PANS) in the United Kingdom

Save Babies through Screening Foundation are pleased to announce the formation of the Patient Advocacy for Newborn Screening Group (PANS) in the United Kingdom.

This is a consortium of executives from some of the key patient advocacy organisations in the UK with an interest in promoting and influencing the extension of the newborn screening programme across England, Scotland, Wales and Northern Ireland in a well researched and managed way.

The group, which is Chaired by Save Babies UK, includes Climb (Children Living with Inherited Metabolic Diseases), The MPS Society, (Society for Mucopolysaccharide Diseases) and the British Trust for the Myelin Project.  The group are supported by health and diagnostic professionals including a Pompe Family Support Practitioner.

PANS Group met for the first time in early December 2009 to discuss and agree the Terms of Reference and to develop their strategic plan and research requirements for 2010.

The group will consider all of the issues surrounding NBS in the UK, both generic issues and those in relation to specific diseases.  The group will identify and agree on diseases that could meet the criteria for submission to the UK National Screening Committee (UK NSC) newborn screening programme and will make recommendations and arguments in terms of those diseases following specific criteria within the terms of reference.

In particular, the group may consider diseases that are not necessarily on the radar of the UK NSC or those which could be included on a faster time scale than currently proposed.  The health requirements of each country, England, Wales, Scotland and Northern Ireland will be addressed, including the impact of different legislative requirements.

As part of the work, some other key areas will be considered:

To identify where there are specific weaknesses or failings in the current National Screening Committee or countries processes and programmes, including tests, specialist knowledge and training.  The group will make suggestions or recommendations as appropriate on how these could be addressed.

To examine the issues around ‘informed consent’, what this means to patients and parents and make recommendations as appropriate on how this could be improved or better implemented.

To promote consistency, where feasible, in adoption of and timings of UK NSC NBS recommendations across each country in the UK.

To explore and have regard to improvements in education and awareness for clinicians, GPs, heath professionals, parents, Ministers  and MPs and will make recommendations as appropriate.

The Patient Advocacy for Newborn Screening Group will take an active part in informing Rare Disease Planning both for the UK and in terms of working alongside other organizations with similar goals within Europe.

January 2010