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Our Helpline: how we support the CF community

Blog - 09/12/2022

In 2021/22, our dedicated Helpline team responded to over 4,200 enquiries from the CF community on a huge range of topics, from coping with a new diagnosis to supporting you through the COVID-19 pandemic. During what was another tough year for everybody, our Helpline service continued to adapt to the changing needs of our community, providing support, information and signposting when people with CF and their families needed it most.

Here for you

Our Helpline is available to anyone looking for information or support with any aspect of cystic fibrosis, a listening ear, or just to talk things through with someone.

You can call one of our friendly Helpline team Monday to Friday, 10am – 4pm, on 0300 373 1000 or 020 3795 2184.

You can also leave us a voicemail outside of our opening hours, send an email to [email protected] or contact us through our social media pages. We aim to get back to you as soon as possible.

What we do

We provide information and support about any aspect of cystic fibrosis. We offer a listening ear and can help signpost you to any assistance through the Trust, other organisations, or any other avenues of support which may be appropriate to you and your family. We can also help you to access our other support services such as benefits advice, income maximisation and CF Connect.

I’ve been working on the Helpline for around four years now. I derive a lot of satisfaction from working on the Helpline as I get to help people every day by providing useful information and support, often to the most vulnerable at crucial periods in their respective lives. Giving the CF community practical or emotional support when they are concerned, confused or experiencing stress is really rewarding.
Dom, a member of our Helpline team

How we are making a difference

In 2021/22, we responded to over 4,200 enquiries, covering a wide range of issues around CF. We responded to enquiries related to COVID-19, providing a listening ear for those worried about infection risk as well as practical information and signposting.

Many people who come to us need practical answers to their questions, but they also need our support and understanding. The Helpline is always here to provide helpful information and signposting, as well as a listening ear and a safe space for people affected by CF to talk through any worries and concerns. This year, following work to ensure the Helpline is as easy to access as possible, the number of Helpline enquiries received via social media increased significantly.

The Helpline team have been my first port of call for many questions, worries or situations that we have found ourselves in, CF related. I'm very grateful to have access to this support.
Helpline user

According to our survey, 100% of people who used our Helpline said they felt heard and understood, were very satisfied with the help they received, and would recommend our Helpline service.

87% felt less stressed and anxious after talking to us and 93% said they felt more confident dealing with the problem that they were facing.

This is just one example of how our Helpline supports people with CF like Kate*

Kate* contacted the Helpline recently to ask about a holiday grant as she was worried about how she’ll be able to afford to go to her mum’s wedding. This was clearly upsetting for her in itself but once the Helpline gave her space and time to open up it was clear there were many other issues she was facing with her finances and her wellbeing.

Kate’s cooker was broken and she was surviving on food that could be heated with hot water from her kettle and cereal. This was especially worrying as Kate is also diabetic. Her washing machine was also broken and as she had broken her arm she was struggling to wash things by hand. She told us she had a significant amount of energy debt she was anxious about. We talked her through our welfare advice and income maximisation services to help with this. It was positive to hear she was already getting support with this, but let her know those services were there in the future if she needed it.

The Helpline team discussed with the Welfare and Grants team the best options for her. The team called Kate and walked through an application over the phone for an Edward W Joseph Home Care grant as she couldn’t fill the form in herself. The £500 grant was paid to Kate and will help her to pay for a new cooker to ensure she can cook the food she needs to stay well and to help with the cost of repairing her washing machine.

*name changed for confidentiality

The gentleman I spoke to was extremely helpful and gave me the accurate and precise information I was looking for. He followed it up by email, sending me the information and answering my further questions. He was patient, kind and generous with his time and knowledge and I appreciate that enormously.
Helpline user

It’s thanks to you that we’re able to run our Helpline and we couldn’t do it without the support you provide. If you’d like to donate, to help ensure we can continue being there for everyone affected by CF, you can give as much or as little as you’d like here.

To find out more about how we've made a difference, together, You can read our latest impact report here.

Everyone with CF has different needs, but if we join together we can make change happen.

Will you unite with us and the entire CF community this festive season so we can keep funding our vital work, that could bring improved treatments for people with CF?

There are lots of ways you can support us this festive season, from playing our raffle through to doing some festive fundraising or buying Christmas cards and gifts for a loved one from our online shop.

Find out more