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Cystic Fibrosis Trust

Notes from the helpline

Find out more about how our helpline deals with calls about cystic fibrosis (CF) and bereavement from Becky Kilgariff, Support Services Manager at the Cystic Fibrosis Trust.

We get a whole range of calls to the Cystic Fibrosis Trust helpline, such as enquiries about our grants, travel insurance, schools, research updates and benefits advice. We also speak to people who are going through a difficult time and just want someone to talk to. 

How we can help

For people who’ve been bereaved as a result of cystic fibrosis – partners, parents and other family members – it can be the toughest time of all. We sometimes hear from bereaved families or partners quite soon after their loss, with enquiries about funeral expenses, many who have heard about our funeral grants programme. We also take calls from people further through the process, who are not only still dealing with their grief, but also trying to cope with financial situations resulting from the death of their partner or family member. Our Welfare and Rights Advisor can also advise on benefits for bereaved families to help take their mind off of financial worries at such a difficult time. 

Letting it all out

People who’ve been bereaved also phone just to talk. We are not trained counsellors, but we understand cystic fibrosis and we’re here to listen, and people often tell us that they just want to talk about their loved one. We know, either from these calls or in other ways, that people who’ve been bereaved by CF are looking for support and information from the Cystic Fibrosis Trust, which is why we have developed some new resources. 

Bereavement resources

Several volunteers who have experienced bereavement through cystic fibrosis worked with us as we developed some new information to support people dealing with the death of someone close to them. We’re so grateful to them for sharing their stories and guiding us as we navigated this tricky topic. We’re also fortunate that we have close links with CF teams, and many professionals were keen to be involved and help us develop new information.

Thanks to all of their help, we now have some new booklets for people going through a bereavement, including simple information about the grieving process and dealing with other people, and signposting to other helpful organisations. I know all too well from my experience on the helpline, that a booklet alone can’t take away the pain of a bereavement. But I hope that these booklets, which signpost on to other organisations for specialist counselling, along with the listening support we provide here, might just make things a little easier for people trying to cope at the hardest of times. 

You can read the booklets online or order printed copies through the helpline. If you want to talk, the helpline can be reached on 0300 373 1000 or at helpline@cysticfibrosis.org.uk and is open from Monday-Friday 9am-5pm.