Bolton Pulmonary Fibrosis Support Group …
There is very little information available about Idiopathic Pulmonary Fibrosis (IPF) especially for those newly diagnosed. The Bolton Pulmonary Fibrosis Support Group was setup by men and women who have Idiopathic Pulmonary Fibrosis themselves, some are on the register waiting for a Lung Transplant. They along with their family members, friends and carers have first hand knowledge of the condition, how it affects them; their daily lives their families. They have come together as a group to provide support, help and understanding to others with this incurable debilitating condition.
The founding members were the first group to be invited to the newly funded Idiopathic Pulmonary Fibrosis rehabilitation course, which started in September 2017 and continued over a period of eight weeks. The course was very informative about Idiopathic Pulmonary Fibrosis, how its affects individuals, how it is diagnosed and managed. Different ways to adapt to life, living with this, at present, incurable condition, what help is available with regards to support, self help etc. From day one every one in the group got on so well, that the support for each other, the fun, banter and laughter just continued to grow. At the end of the eight weeks, we all said what are we going to do each Monday and Thursday, now that the course has come to an end, we must all keep in touch.
It was then that Michaela, one of the specialist respiratory nurses, introduced us to Lorna McLaughlan from the charity Action for Pulmonary Fibrosis. Lorna came up with perfect solution to allow us to remain together as a group and that was to set up a support group of our own, affiliated to Action for Pulmonary Fibrosis, as they say the rest is history, Bolton Pulmonary Fibrosis Support Group was born.