How we’re meeting the needs of our community through our updated grants programme

Since the 1980s the Trust has been providing grants to help adults and children with CF cope with the daily challenges the condition can bring. The direct financial support provided by the grants is more important than ever as we look at ways to tackle health inequalities and support the CF community through the cost of living crisis.

In 2021/22 alone, we provided 940 grants, totally over £292,000. Our grants support people with CF, such as Annie*, a toddler who has CF and requires a specific diet to keep her well. The family are on a low income with no money to spare each month, and through no fault of their own an error with their benefits had left them without enough money for food. Without a grant from us, they would have had to manage with empty shelves and only enough money for very basic food which wouldn’t meet Annie’s needs. 

Meeting the needs of our community

Over the past two years, we have been reviewing our grants programme to make sure it can continue to meet the needs of those who need our support the most. We set out with a clear aim: for our grants to have as much impact as possible for the people they are here for.

The most important part of the review has been talking to the CF community. We carried out several surveys, both with those who had received our grants in the past and those who hadn’t. We also sent surveys to CF professionals and added questions to our feedback surveys sent to people who received our Winter Hardship grant last winter. We asked questions about what was most important for us to fund and how we could make sure we provided the help people needed in a fair way when our budget is limited.

As well as surveys and discussions with people with CF and CF professionals, we looked at what other grant providers offer and learnt from the things that work well for them. We also had a better understanding of what people needed from the extra grants we delivered during COVID-19 and the Winter Hardship Support Fund we provided in early 2022. The rollercoaster of the past few years has meant we have had to quickly develop new grants and services to meet changing needs and protect CF health through difficult times.

The key changes we’ve made

The key question for the review was where we should aim our support in an ever-changing world? The results were loud and clear. You told us we should focus our grants where they have the most impact: on those who face the biggest challenges due to their CF, and those on low incomes. This means we are now making changes to our grants, including introducing some financial eligibility criteria and updating the forms to ask for a bit more information about how the grant will benefit CF health. We’ve also made changes to make sure we can help as many people as possible in the most sustainable way, including increasing referrals to our welfare advice services to make sure people with CF are receiving all the financial support they should be.

One of the key changes to come out of the review is that we are introducing a new Home Essentials Fund which will speed up access to vital household appliances. For someone with CF, a broken fridge is a disaster, leaving them unable to store their medication or the food they need to stay well. Through the surveys, you told us we needed to speed up access to grants for appliances, and this new fund means we will be able to help those in urgent need and at risk of damage to CF health, within 7 to 10 days.

These adjustments to our grants come in the backdrop of the cost of living crisis, which causes real worry for people with CF and those who care for them. If you can’t afford the food you need or are trying to cope without putting the heating on, your health is at risk. Last winter, over 70% of people who received our Winter Hardship Support Fund told us they were choosing between heating and eating. Since then, energy and food prices have continued to increase dramatically so we’ve made sure extra support is available again this winter through our Cost of Living Fund. This does mean stretching our resources to make sure we can help those who are most vulnerable through the difficult winter ahead, and to do this we’ve had to continue to pause some of our other grants, including grants for gym membership. These are never easy decisions, but CF professionals told us that we needed to do what we could to protect the health of people with CF this winter.

We won’t stop

Through our review of the grants, you have clearly told us how important grants are to the CF community, particularly highlighting the positive impact they can have on mental health.  

Our revised grants programme will allow us to support even more people with CF and their families through what will be a really difficult winter in an effective and sustainable way. We won’t stop until everyone with cystic fibrosis can truly live a life unlimited by their condition: physically well, mentally well, and personally fulfilled.

*not her real name

We’re very grateful to those of you who took part in our consultations and surveys.

To help us inform our future work in providing support and campaigning on behalf of our community, we’re working with the University of Bristol to find out exactly what the extra day-to-day costs that people with CF and their families face. We want to know about the extra financial costs to you and your family, how these costs impact your wellbeing, and the decisions you make around work and education. Can you help us by taking our quick survey?

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,800 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

We provide a range of grants for people with cystic fibrosis and their families, support for those applying for benefits and information about prescription charges. You can find out more about the financial support we offer here.

Read more about our Cost of CF report and what we’re calling for