SWASAG: Our story – By Julie Pleau and Helen Rowe, Co-founders, SWASAG

Our story starts back in November 2015 when our dad, Mike Moncini, was diagnosed with mesothelioma. Prior to his diagnosis, he was a fit and healthy man, enjoying his retirement after working in the police force for more than 30 years.

During the summer of 2015 whilst enjoying a break with friends in London, Dad found he was becoming breathless when walking uphill or for long periods. Dad had been diagnosed with pleural plaques some years before after being exposed to asbestos when he was an apprentice carpenter aged 19. He decided to go to his GP and, as a result of his known asbestos exposure, he was referred for a chest X-ray and CT scan, which revealed a small amount of fluid around one of his lungs. A biopsy followed and a temporary drain was fitted. Then he was given the terrible diagnosis of mesothelioma.

The diagnosis was an utter shock to us all. Although we had heard of mesothelioma having carried out some research whilst he was having the tests, we did not think that would be the outcome. Realising it was a terminal illness with little or no treatment available, we were all devasted and very scared. We did not know where to go or how to get any help or support.

As a family in 2016, we attended the Mesothelioma UK Patient & Carer Day. It was such a wonderful day, full of information and positivity. Dad came away with a new lease of life and was determined to make a difference. He even signed up to the Mesothelioma UK Patient Advisory Board, which meant he went to London on several occasions to meet with rest of the Board. It was something he felt really proud of and very much enjoyed.

After returning from one of these trips, Dad tried to find a support group for patients with an asbestos-related disease in Cornwall and realised one did not exist. Dad took to Facebook in the hope of finding one, which is when he came across a post announcing that Derriford Hospital had appointed a Mesothelioma UK Nurse for the South West, Christine Jones. Dad immediately contacted Christine who invited him to a small support group in Plymouth for those living with mesothelioma. Mum and Dad went along and met others in the same position as them. It was so important to know that they were not alone and to have some support.

Dad was keen to set up a similar support group in Cornwall and so – with Christine – they secured a venue and set the date for Cornwall’s first coffee morning to support those with mesothelioma and their families. They contacted the lung cancer nurses at Treliske Hospital in Truro who were more than happy to direct their mesothelioma patients to the support group. That was just the beginning. To our surprise, many people attended and so we knew that the support group had to continue.

In 2017, after a few months of extremely successful coffee mornings in both Plymouth and Truro, Christine approached us to ask if we would be interested in going a step further and creating a registered charity, namely the South West Asbestos Support and Awareness Group (“SWASAG”), to help all those in the South West affected by mesothelioma and other asbestos related illnesses. We, of course, jumped at the chance. We continued to run coffee mornings once a month with Christine in both Plymouth and Truro, which were very popular and proved the need for such a charity.

Dad was deteriorating fast towards the end of 2017 and sadly passed away in January 2018. We were all devastated by his loss. It wasn’t until May 2018 that SWASAG was awarded charity status and so, sadly, Dad never saw it established However, his legacy lives on through SWASAG.

SWASAG currently holds monthly coffee mornings in Plymouth and Truro and is still attended and supported by Christine whom SWASAG part-fund. We also invite our panel of lawyers along to advise and support our patients and their families on the compensation claim process. Our Truro coffee mornings are also supported by the lung cancer nurses from Treliske Hospital who try to attend every month. Our patients find it helpful to seek their advice or ask questions that they forgo to ask at their clinic appointments.

SWASAG have recently launched coffee mornings in Torquay and are aiming to expand into North Devon in the near future.

SWASAG prides itself on supporting sufferers and their families through the awful journey from diagnosis. Our aim is to ensure they all have correct and up-to-date information about treatments and trials.

As mentioned above, our fundraising helps to fund Christine as a Mesothelioma UK Nurse and to ensure all our sufferers and their families have the chance to attend events such as Mesothelioma Patient & Carer Day every year. We take around 30 patients and carers from Devon and Cornwall to the event, which enables them to speak with the very best doctors, professors, and nurses in the NHS. We also mark national events such as Action Mesothelioma Day and hold an annual fundraiser every January in memory of Dad, raising between £3,000 and £4,500.

SWASAG continues to grow reaching out to as many patients, families, and friends of those suffering with mesothelioma and any asbestos-related disease.