Group Chair: Debbie Komaromy
Group Secretary: Mel McSweeney
Background
Nurses with a special interest in metabolic disorders began
meeting in 2002 to exchange information and share their expertise.
Until then, there had been no nursing group which specifically focused
on inborn errors of metabolism. The group convened on four occasions,
meeting in London, Birmingham and Crewe, and attracting paediatric
and adult nurses from throughout the UK. These meetings were kindly
sponsored by Orphan UK and Genzyme Ltd.
At the last meeting in September 2003, it was agreed unanimously
that it would be appropriate to join an established, multidisciplinary
metabolic group, and the BIMDG was approached.
As part of the BIMDG, we hope to benefit from the expertise
of colleagues within the group and contribute a nursing perspective. Purpose of the Nurses Group
The group has been established specifically to promote patient
care by sharing information, ideas and experiences. The group aims
to promote excellence in the nursing care of patients with inborn errors
of metabolism, and their families.
Membership of the Nurses Group
The group is open to all nurses who are members of the BIMDG.
Currently, membership includes both paediatric and adult nurses dealing
with patients in both hospital and community settings. Most, though
not all, have clinical nurse specialist roles, but nurses with all
levels of experience and expertise would be welcome.
Events and activities
The Nurses' Group now meets every six months, holding an
annual meeting in the autumn, and with a satellite meeting
at the BIMDG annual conference.
Topics at meetings so far have included care and therapy
of patients with storage disorders, such as Gaucher’s and Fabry’s
disease, and the Organic Acidaemias and Urea Cycle Disorders.
Case studies, nursing research and novel therapies have been
presented and we have
benefited from outside speakers and presentations from those
within the group.
Next meeting
The next meeting of the Nurses’ Group will be . . . to be announced
Further details
For further information, please contact the group secretary
via the ‘contact page’ on this site.
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