A SUPPORT group set up for those suffering from a "poorly understood disease" has quickly become a "life-changing" network for patients and their carers.
As previously reported by the Journal, Lowton dad-of-three Tony Brierley has been campaigning with the Action for Pulmonary Fibrosis charity since his wife Sue was diagnosed with the disease in 2015.
As the degenerative disease resulted in Tony becoming his wife's full time carer, the family quickly became aware of the difficulties facing sufferers and patients - with the former engineer now leading the campaign for significant change.
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Although Pulmonary Fibrosis (PF) usually affects people in their seventies, people like Sue are getting idiopathic (unknown cause) diagnoses much earlier in life.
Tony and the PF support group believe that these earlier diagnoses are due to a general lack of understanding around the disease, and the fact that there is no clear clinical pathway for those presenting with symptoms.
This has had worrying implications, Tony explained, as those waiting for appointments, diagnosis, and treatment, have experienced worsening symptoms of lung scarring and breathing difficulties.
And as the disease has an average life expectancy of three to five years, this is one of the main reasons why Tony and the support group want to improve awareness of the disease, as well as improved care for sufferers and support for carers.
As well as fighting for awareness and improved care, Tony said that the local PF support group has been "life changing" for families who were struggling with how to cope with the disease.
Initially set up by nurses in Wigan's Royal Albert Hospital, and later maintained over Zoom during the pandemic, Tony now leads the support group at St Michaels and All Angels Church in Wigan.
Along with palliative care staff and specialist nurses, around 20 to 30 people come along to the monthly meetings, and they are a great network of support and guidance from people who have experienced similar situations.
After learning how families have experienced similar shortcomings in clinical care and pathways, the group has been campaigning to raise as much awareness of PF as possible.
The group has also gained the support of Wigan MP Lisa Nandy and Labour candidate for Leigh and Atherton, Jo Platt, to try and spread this message further and encourage government investment.
Tony has also appeared on BBC Breakfast advocating for the rights of carers, quizzed Liz Truss when she came to Leigh, and raised the issue with the town's MP, James Grundy.
In the spirit of money and awareness raising, nurses from the hospital's palliative care and respiratory teams completed a (torrential) 10 mile charity walk in November 2023 to raise funds to help the support group, with Tony hoping that the group can continue to remain a free to access service for all.
More information about Pulmonary Fibrosis and the local support group can be found here.
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