“We can of course help people that want
to set up new clubs too. Often that will be
patients or family members, but it might
also be a speech therapist or someone else
involved in the clinical pathway. Often
someone who has worked in another area
where a club is already running will get in
touch to suggest setting one up in their new
area.”
NALC offers lots of invaluable information
on setting up the club infrastructure, but
aren’t prescriptive about it. They know that
every club needs to forge its own identity,
and find its own way of doing things.
“Different areas need
different things, and we’re
very clear with people
that their club needs to
be right for them.”
Every affiliated group gets a start-up grant
to get things going, and can use NALC’s
charity number for their fundraising
activities.
Members in charge
Of course NALC membership has its
privileges.
“Our members are really the governing
body of NALC. We hold four General
Committee meetings per year and clubs
send their representatives to take part.
This is where things happen – this is where
all the plans for taking NALC forward are
made, and it’s the members who set the
agenda.”
One of the successful ideas to come out
of these meetings was a presentation
to nurses, speech therapists and
student practitioners to be made by
laryngectomees, as a way of articulating
the sort of issues and obstacles they really
face. And that’s a good example of how a
member-led agenda works.
There are lots of benefits of being a
local part of a national organisation too.
Members can raise their own local issues
which, if appropriate, NALC can then
try to address on their behalf. Similarly,
NALC will often be invited onto decisionmaking panels for issues directly involving
laryngectomees. They were recently
involved in work on the new information
prescription scheme – the government’s
database of patient information that will
enable NHS staff to access and print off
all the necessary patient information
whenever and wherever that patient
accesses care services. And Vivien is justly
proud of the fact that NALC literature is
being used to detail the necessities of
laryngectomy care for this service.
This is all part and parcel of their function.
As Vivien says,
“It’s all about speaking up for head
and neck cancer patients. Sometimes
that means getting behind Macmillan
campaigns and giving advice to the
Citizen’s Advice Bureau; sometimes
it means lobbying parliament on
laryngectomee issues.”
“So, it really doesn’t matter whether you’re
an individual or in a club with a hundred
members, we help laryngectomees
wherever they might be. And we will
continue to do so. Ultimately my wish is to
get to the day – and I think it will come –
when there are cures in place for all cancers.
But until that day comes, we will be here
making sure that anyone who needs our
help, gets it.”
Contact NALC at Lower Ground Floor, 152
Buckingham Palace Road, London SW1W
9TR, tel 020 7730 8585, www.laryngectomy.
org.uk
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Autumn 2011 | THE VOICE
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