Caring for someone with pulmonary fibrosis (PF) can be physically and mentally challenging. If you support someone with PF, whether you’re a friend, family member or carer, we offer a safe space where you can meet others in a similar position. This support group is for you to share your experiences, feel supported and be part of a community.
What is it?
A regular online meeting where the focus is on you and your needs as someone who is supporting a person with PF. In 2020 we spoke with carers about what support they needed and from this discussion the carers support group was formed.
We often have a guest speaker for part of the meeting, speaking on practical topics. Previous speakers have covered:
- Lasting powers of attorney
- Mindfulness and relaxation
- Carers assessments
- Art therapy
- Palliative care
The rest of the meeting is a free-flowing discussion that is guided by you. You can talk about anything that is on your mind: how you’re feeling, a difficult situation, a practical problem. Most of the time you’ll find that your experience is familiar to others in the group. Whilst people have different relationships to someone with PF, or they may be at different stages of their journey, there’s often something to learn from each other’s experiences.
You also don’t have to share if you don’t want to. You’re welcome to come along and just listen.
The group meetings are facilitated by someone who has experience of supporting a person with PF. There is often also a Regional Support Coordinator from Action for Pulmonary Fibrosis (APF). The facilitator guides the meeting to ensure that the discussion is relevant and helpful, and that everyone can participate if they want to.
Who is it for?
We ask that only carers, family, friends or bereaved carers of people with PF attend the group. It’s a space where people can freely discuss difficult emotions and situations with people going through similar experiences. If people with a diagnosis of PF are present, some things may be difficult to share.
Where and when?
This support group is currently held online via Zoom on the first Monday of the month at 2-4pm.
The next meeting will take place on Monday 5 February 2024.
How do I attend a meeting?
We'll send you details about the next meeting, including any discussion topics or guest speakers. We'll also include any general updates or information that carers might find useful, so some people sign up for the emails even if they're not sure about attending a meeting.