How we can help: six ways our Helpline can help you

People came to us for a wide range of reasons. Some needed practical support, helping them move on to their next step or support with solving a complicated problem. Some just needed key information about a particular aspect of CF. Others just needed someone to talk to on a difficult day. 

Below we share some of the main ways we helped in the past year and how you can get support via our Helpline too.

1. Financial support and cost-of-living help

The cost-of-living crisis is a huge burden and worry for many in the CF community. Even before the crisis, we know that financial problems caused huge worries for lots of people in the CF community. We have a number of services to help ease financial burdens that come with having a condition like cystic fibrosis, such as our welfare grants. 

We provide a range of welfare grants to help in times of financial need. These include grants for emergencies, transplant assessments, health and well-being, holidays and breaks, home care, education, prescription pre-payment certificates and funerals. We also offer support with applying for benefits like Personal Independent Payment, Disability Living Allowance and Universal Credit. 

Finally, our Income Maximisation Service can support you to check that you are getting all the financial assistance you are entitled to and help you to make the most out of your money.

2. Help you to connect with others who are affected by cystic fibrosis

Our CF Connect service  provides peer support and enables you to you to a trained volunteer who also has a child with cystic fibrosis. Whether your child has recently been diagnosed with CF or whether you’ve got worries or questions further down the line, CF Connect can put you in touch with someone who understands.

CF Connect volunteers are all parents of children with CF, so as well as offering a listening ear, advice and support, and the chance to share experiences, they also understand the challenges you may be facing. We have volunteers across the country with children of different ages who are there to help.

You can also chat with other people affected by cystic fibrosis on our community forum. Our forum is facilitated and moderated to ensure a safe space. Since we re-introduced the forum last year, it has grown into a vibrant, helpful and safe space, so if you have a question, need support or want to talk to others about CF, please join us today.

3. Someone to talk to

Sometimes you may just need someone to talk to or a listening ear. We understand things can get tough, and talking it through confidentially with one of our friendly advisors can help lift worries or make sense of what’s going through your mind.

4. Information about CF and life with CF

Questions about CF can crop up every day, and while your CF specialist team are always best placed to offer advice on your or your child’s specific CF health, we can provide general information about cystic fibrosis. We can also send our PIF tick accredited information resources in the post, which cover a wide range of topics relating to CF, including our school packs, new parent pack and resources for children.

5. Support with work 

We offer information, advice, signposting, and practical support to people with CF and people who care for those with CF through our Work Forwards programme.

Through this programme, we offer tailored one-to-one support to help you identify your career goals and find fulfilling employment. We can provide support to find the right balance between employment and caring responsibilities and help with employment rights, as well as group sessions where you can learn key employability skills and share experiences of work and CF to inspire and support others.

6. Support for students

We can provide personalised support through our Student Support Service to discuss a student’s circumstances. We work together to consider all the options available to increase your income, such as welfare benefits and discretionary payments, and look at budgeting and discounts. We can also discuss your rights and support you in applying for Disabled Students’ Allowance. We will consider what support you may need to get the most out of your studies and enjoy student life while living with CF.

We also have education grants available. We know that people with cystic fibrosis can face extra challenges and costs when studying at a higher or further education level. The Joseph Levy Education Fund is here to help with some of these additional financial costs.

These are just some of the ways we can help. If there’s something that’s worrying you or you need to talk something through with someone, just contact our Helpline on 0300 373 1000, email [email protected], or WhatsApp us at 07361 582053. We’re here if you need us.

Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects more than 10,900 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.

Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives -and we won’t stop until everyone can live without limits imposed by CF.

If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.

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