Trust Chief Executive
Ed Owen talks about why the Trust offers grants to help those with cysticfibrosis most in need.
I
am sometimes asked by supporters why the Trust chooses to provide financial
grants to people with cystic fibrosis and their families when this diverts
money from vital research and care.
It’s
an important question, especially from those whose efforts help raise the funds
we rely on to carry out our vital work – and one that I am pleased to address
as we revamp the way we issue health and wellbeing grants.
I
am very clear that supporting those with cystic fibrosis in most need with appropriate,
focused help is the right thing for us to do. Whether it is the young person
starting out on their own for the first time who needs help to buy a fridge
essential for medication, or support for a hard-pressed family to purchase a
trampoline to keep their child fit and active, we can make a real and positive
difference to people’s lives in this way.
I
am also proud that the Trust can provide opportunities to people with cystic
fibrosis living on low incomes to take a holiday break which they otherwise
could not afford – and to provide funeral grants of £750 to the families of
those who have lost their lives to this cruel condition.
We
cannot and do not, however, run a benefits service to provide ongoing support
for people out of work or unable to work. This is the job of government and the
Trust campaigns to ensure all people with cystic fibrosis get appropriate
support.
We
also do not provide support for clinical equipment such as fast nebulisers.
These should be provided by the NHS and the Trust must never become a means by
which health providers avoid obligations they have to provide appropriate
healthcare to people with cystic fibrosis.
And
many particular services required by those affected by cystic fibrosis are best
provided by other organisations like the Citizens Advice Bureau. So, through
our advice helpline and website, we point families and individuals in their
direction.
It
is vital that the financial support we do provide is focused on those in most
need – and so we have changed the application system to put a particular
emphasis on those on low incomes. It is also important that as many people as
possible can access the scheme. So we are working closely with CF clinics to
promote the grants system to those who might benefit.
Finally,
it is essential that the decision on whether a grant is awarded or not is taken
fairly and clearly. So a new grants
panel, chaired by Peter Sharp, a former trustee of the Cystic Fibrosis Trust
and someone living with cystic fibrosis himself, and including experts in CF
and welfare, assesses all health and wellbeing applications.
We
are currently spending about 1.5% of the Trust’s income on financial support
for people with cystic fibrosis – and it represents about a 20th of our
research budget.
But,
at a time of welfare cuts and austerity, the system provides an important
support lifeline for people with cystic fibrosis and their families who
struggle to get by. I am clear that this is the right thing for us to do, and I
am hugely grateful for the work of all our supporters that enable us to fund
it.
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