Support services specific to pulmonary fibrosis
Carers of people with pulmonary fibrosis tell us that other people sometimes struggle to understand what they are going through. Some say they feel guilty if they are struggling. They may be unable to speak up, believing that the person they care for is the one who needs the support, not them.
You don’t have to go through this alone.
There is likely to be a support group for pulmonary fibrosis patients and families near you.
Those who attend a group say that the support can be life-changing. You will find lots of information and advice on living with pulmonary fibrosis – as well as a place to meet and chat with other carers.
The support group has been my sanctuary – I don’t know what we’d have done without it.
You can email us or call the Action for Pulmonary Fibrosis support line 24/7 and leave a message on our support line for patients and carers. Our specialist Interstitial Lung Disease (ILD) Nurse, Lucy, or one of our patient ambassadors will get back to you within two working days.
Call 01223 785725
Support on social media
Family members can find helpful information from others going through the same thing on social media.
- Follow Action for Pulmonary Fibrosis on Facebook for a positive source of information.
- Follow Action for Pulmonary Fibrosis on Twitter for regular information around research, education and campaigning.
Some family members find focusing on a goal or challenge is a good way for something positive to come out the situation. Many families tell us they want to raise awareness as well as funds to fight pulmonary fibrosis.
Action for Pulmonary Fibrosis offers support and advice with pulmonary fibrosis fundraising.
Support in the community
Government support for carers
There is government support and financial help available for people who care for others. Find out about government support for carers
Local support for carers
Have a look at Carers UK to find out about the services in your area.
It’s also a good idea to Google ‘support for carers in Nottingham’ (or wherever you live) and lots of support services will pop up.
Support from the hospice
Your local hospice can be a wonderful source of support. Hospice teams are skilled at helping people to enjoy quality of life, as well as providing great care later on in life.
There are hospices in most towns and cities and they will all offer slightly different support.
You can find more information and search for hospices near you at Hospice UK.