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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
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