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.