Pulmonary Fibrosis Support

Our Pulmonary Fibrosis (PF) Support Group

The PF support group was established to offer peer and professional support for those affected by the disease in 2015. It generally meets for 2 hours every two months on a Tuesday.

Those living with pulmonary fibrosis and their carers are welcome to attend.

Prior to attending the group, an initial patient assessment is completed (this is following either a self-referral or referral from a healthcare professional involved in your care)

Cake and tea are very important when the group meets face to face, allowing time and space to chat socially and encourage mutual support.

The group also involves exercise, relaxation, speakers and other activities. At the latter part of the session, carers have a session separate to those living with PF – a safe place to support one another and talk about any challenges they may be facing.

The group also runs some social events, such as a canal trip, picnic and Christmas festivities.

During covid times, the group met on zoom, which kept folk connected but was not as popular as face to face meetings.

For details of forthcoming dates of the group please email hospiceofstfrancis.berkhamsted@nhs.net

Not in Bucks or Herts but want to access a pulmonary fibrosis support group?

Please visit Action for Pulmonary Fibrosis to find details of local support group.

Find out more

"When palliative care/hospice is mentioned people shouldn’t get frightened. They don’t just support end of life. They help people live with their illnesses.  The hospice I attend has helped and encouraged me to be more active. They also helped me when I wanted to speak to my husband about my future. They support all the family."

PF group member

"When the people we care for have a crushingly depressing day we in turn have a crushing depressing day. And you are going through lots of that and there's no one really to step into your corner. Unless you have access to something like this (the hospice), you are very much on your own to be perfectly honest."

Carer from Support Group

"I think of a Hospice as a place where totally unconditional support is offered to patients and families and where all are listened to carefully and are treated with dignity and respect... a place which will challenge views, treatment, discussion as well as provide a comfort blanket."

PF group member

"It's really good to meet up with other carers. They come up with ideas to help you … they know how you feel basically. You sometimes feel so alone with your feelings it's nice to know that other carers are going through exactly the same type of thing. It's the support of the other members as well as the hospice."

Carer from Support Group