In 2004 my mother was diagnosed with Pulmonary Fibrosis.
It soon became very apparent from a family member and carer perspective how little support was available. When my mother passed away in 2009 we decided to set up a monthly support group for patients. We felt we would be able to give valuable support to patients and their families from our own experiences, and have a great team of specialists who play a vital role.
We meet once a month in a local hotel, some meetings we have guest speakers in to talk about living with the condition and others are a chance to have a chat and swap coping strategies.
Our first meeting of the year is a wish list for patients to plan what topics would be of interest. We have patients who attend every meeting others may choose to come when they are interested in a particular talk.
In 2011 Pulmonary Fibrosis Wales charity was launched and an informative website. Every year we choose a designated project. Last year we raised money for vital research equipment for a local hospital.
This year’s project is to design an informative booklet for patients giving a practical guide. This will be distributed nationally throughout hospitals and is also available to down load off our website.