You are not alone, there are great support services out there. The key is to find what works for you and the person you care for.

of UK caregivers surveyed said they felt unprepared for their caring role¹

Connecting with other caregivers

Sharing experiences with someone who understands you can be very helpful. You could find support from:

Regional, national, or international support organisations, who often provide support via their websites or organise meet-ups. Ask the doctor or nurse for information or someone to contact
Clinics that specialise in treating Interstitial Lung Diseases. They may have support groups or meetings for caregivers
Advice helplines run by several caregiver organisations. They can be a great place to get one-to-one advice
Caregiver conferences. Search online or ask the doctor/nurse for information on any conferences near you
Online support forums that offer more personalised, real-life discussion
Groups for caregivers, or those talking about pulmonary fibrosis on social media, like Facebook or Twitter. These can be a great source of uplifting and motivational messages

If you know other caregivers, perhaps consider setting up your own support network. You could use messaging apps to create group conversations to share tips and support. Just be careful when disclosing any personal details online.

Carer of someone with pulmonary fibrosis

“Never cope alone as a carer there is always someone there to listen and understand how you feel”

Extra resources

You might be able to get extra financial, practical or emotional support. Check with:

Your local government

National and regional charities

The relevant doctor or nurse

Many groups and institutions support and represent people with pulmonary fibrosis.

Carers UK. Carers suffering due to lack of support. Available at: https://www.carersuk.org/search/carers-suffering-due-to-lack-of-support/ [Accessed March 2022].

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“My mum has been pretty much my rock throughout. Whenever I've felt emotional, she'll just listen and be there for you. But also, when you're ready to just laugh, she's ready to laugh and just have a good time”