Issue 34

Raising awareness
27
Campaigns and policy work update
The Foundation takes part in
regular policy work, campaigning
on key issues facing pituitary
patients to improve care and services.
This regular article in the magazine
keeps our members informed about
our recent activities, and offers details
about how to get involved in the three
campaigns we run each year.
l The decision was announced in the
summer that we helped to ensure that
Pasireotide has now been approved
and made available on the NHS in
Wales. Pasireotide is a new medicine for
those with uncontrolled Acromegaly.
This follows our involvement in the
same process in Scotland, which saw
Pasireotide being approved last year.
l The Pituitary Foundation are now
involved in a new rare disease Cross Party
Group in Wales. The group includes: Rare
Disease UK, Genetic Alliance, and patient
organisations Turners, Cystic Fibrosis,
and Tuberous Sclerosis. Cross Party
Groups are a good forum for lobbying
governments and provide a coordinated
approach to campaigning. The group
will be launched in February 2017 and
in the meantime we will be involved in
the group’s set up and ensuring pituitary
issues are on the agenda. Rosa Watkin will
be the staff member taking part.
l We have recently completed a patient
group submission to support Plenadren
being made available in Scotland to
patients who would benefit from it.
Thank you to the patients who took
part in our consultation process and
provided case studies. Plenadren is a
modified-release tablet which allows for
a single daily dose for the treatment of
Adrenal Insufficiency.
l Our Know your insipidus from your
mellitus campaign will close once
Awareness Month starts but there is still
a couple of weeks left to get involved.
We have had a fantastic response from
our members, and The Foundation has
contacted over one hundred hospitals
to raise awareness about DI and how
desmopressin is a life- saving medication.
We are still looking for participants
to write to their local A&E staff, ward
nurses, and pharmacists - all working in
non-endocrine hospital settings. Please
email campaigns@pituitary.org.uk to
be sent a template letter.
l We are also busy preparing for October
Awareness Month, find out how to
get involved on page 3. The theme is
early diagnosis, focusing particularly on
improving optician awareness about
pituitary tumours.
For any queries relating to campaigns and
policy work please call 0117 370 1316 or
email campaigns@pituitary.org.uk
and Rosa, our Campaigns, Volunteers &
Events Manager will be happy to help.
To find out more, see how you can get
involved, or for details about becoming a
Volunteer Campaigner you can also visit
the ‘Campaigns’ section of our website ■
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Pituitary life | autumn 2016