Bereavement and cystic fibrosis

We have developed a series of booklets, in partnership with people affected by the loss of a loved one, CF clinicians and social workers, to support families affected by bereavement through cystic fibrosis. There are three booklets, the first giving a more general view of bereavement and the others focusing supporting a child through bereavement and losing a child of any age.

• Losing someone to cystic fibrosis: coping with bereavement (PDF).
• Supporting a child bereaved through cystic fibrosis (PDF).
• Bereavement: losing a child of any age to cystic fibrosis (PDF).

You can download these leaflets or contact our Helpline to request hard copies.

Grief can feel overwhelming, and sometimes it helps to talk to someone outside your friends and family. GriefChat connects you with specially trained bereavement counsellors who will listen to your story, explore how grief is affecting you, and help you find any additional support you might need.

What GriefChat offers

• Compassionate, confidential emotional support from experienced bereavement counsellors
• A safe space to share your feelings and talk through your experience
• Help with next steps, including referrals to other specialist bereavement services if needed

Availability

• GriefChat is completely free
• Available Monday–Friday, 9am–9pm (except Bank Holidays)

To access GriefChat, click the GriefChat box on this page to start a conversation with a counsellor.

We have partnered with Marie Curie so that those who are grieving the loss of someone who had CF can access their telephone support service. 

People have told us lots of times that it can be hard to access bereavement support because many people don’t understand CF, or they aren’t aware of it. We have trained their staff and volunteer team about CF, what it means to lose someone to CF, and they have heard first-hand from people who have lost someone to CF. 

You can get six free sessions over the phone with the same bereavement support volunteer. It’s a safe, confidential space to talk about your feelings around bereavement. Each session can last up to 45 minutes. It is not a counselling service. It is open to anyone over the age of 18 who has lost someone to CF who is an adult.

To access the service, you can fill in the book a call form on Marie Curie’s website. Make sure that you put on your form that you are grieving someone who had CF, so they can match you with a volunteer which has had our training. 

Once you have filled in the online form, you will be contacted by the team at Marie Curie. If you cannot fill in the form, or have any questions about this, please contact our friendly Helpline team.

We have created an advance care plan form for people with CF to fill in, either alone, with family or their clinician. This form can help you to plan what your wishes would be in the event of a significant decline in your health. By recording your wishes in this document it means that both your family and the CF team will know what you would prefer when you become more unwell and reach the end of your life. It is not always possible to follow all your wishes at the time but by recording them it means your CF team can do their best to follow these wherever possible.

The form can be completed all at once or in stages, and a member of the CF team involved will be happy to discuss it at any point.

Our Helpline team are available to contact on 0300 373 1000 or by emailing [email protected] and while we can’t offer specialist bereavement counselling, we can provide a listening ear and signposting to further sources of support.

If you're struggling with your feelings, you can contact Cruse Bereavement Care or the Samaritans.

The government has some useful, practical information on what to do after a death, including how to register the death, notify government departments and manage financial issues.