Go back to 2005. My dad, Dave Salisbury, is a fit and active man. He is enjoying his well-earned retirement from a lifetime working as a carriage builder for British Rail. Dad noticed that he was starting to feel more breathless doing simple things, like walking to the shop for his morning paper.
A visit to the doctor followed. He was advised to go straight to hospital as he thought there was fluid around his lungs. Of course, he didn’t, not straight away anyway! After some time, with his breathlessness getting worse, he went to the Casualty ward at Winchester. Five litres of fluid was drained from his lungs. What followed was the diagnosis he had been dreading. Mesothelioma, an illness he was only too familiar with, after seeing many of his work colleagues suffer with it.
Mum, my sister Diane, and I were devastated at the diagnosis. There was no cure, and treatment at the time was very limited. For the family, there was nobody to turn to for support. We felt lost.
Sadly, Dad lost his battle in December 2005, less than a year after diagnosis. Diane and I were determined to try and do something to help other families in the same situation. We came up with the idea of a coffee morning in Southampton. People diagnosed with mesothelioma and their families could meet up once a month for a cup of tea and a chat. They could compare stories and help each other. The monthly coffee mornings started and were a great success.
In 2006, HASAG became a registered charity. Following word of mouth, more hospitals approached HASAG to ask if they would look after their patients. It soon became a full-time job for me and Diane.
From discussions with patients at our coffee mornings we started to visit them in their homes to complete benefits forms. This was in 2007.
We were then approached by the Queen Alexandra Hospital in Portsmouth. Would we be interested in starting a support group in Portsmouth? A second monthly coffee morning followed. We were also asked to give benefits advice to their patients diagnosed with an asbestos-related disease. This was normally done by the nurses at the hospital but took up a huge chunk of their time which would be much better used caring for their patients. Of course, we agreed. The Queen Alexandra was the first hospital we developed a relationship with.
Step forward to the current day. HASAG now run six monthly coffee mornings in Southampton, Portsmouth, Sussex, Surrey, Berkshire and Essex, as well as a quarterly coffee morning in London. At the centre of all this are our lovely patients. Our community suggested that it would be helpful if a nurse could attend each coffee morning, where they could offer advice and information, and a solicitor who could offer legal advice. We have a close relationship with Mesothelioma UK, and their nurses are only too happy to attend. We also invite specialist lawyers to our coffee mornings to help our patients.
We offer support to patients across the South and South-East of England, including the London boroughs and Home Counties. We now work closely with over 86 hospitals in the region. I have mentioned Mesothelioma UK, we are proud to part-fund five specialist mesothelioma nurse positions within the NHS.
Our team of benefits advisors are very experienced and well-trained. They also have first-hand experience of family members with mesothelioma. The process of applying for benefits is made much easier for our patients. We visit them in their homes and complete all the relevant benefit application paperwork for them. We then liaise closely with the Department for Work and Pensions to see that the benefits are approved as soon as possible. In some cases, patients can be worse off claiming everything they are entitled to, as other payments they receive can be affected. Our team are trained to do ‘better-off’ calculations to ensure that patients do not lose out financially.
Since 2019, we have offered a free counselling service to our patients. This was from feedback we received at our coffee mornings as something that could really help our community and their families. When someone is diagnosed with an asbestos-related disease their first thought will probably be that their ‘normal’ lives are about to change. This often leads to feelings of shock, disbelief, anger, fright and worry. When diagnosed, emotions play an important role in your wellbeing and talking to family and friends definitely helps. However, some people fear the upset that this could bring and won’t, or indeed can’t, talk to their family and this can lead to strained family relationships. Talking to a professional counsellor in private sessions really helps our patients and their loved ones, giving them the mental tools to deal with an emotionally challenging situation.
Since HASAG was formed, we have supported over 6000 patients. In 2020 and 2021 the HASAG Counselling Service provided 340 sessions to our patients and their families. We have donated over £900,000 to Mesothelioma UK, The June Hancock Mesothelioma Research Fund and The Mick Knighton Mesothelioma Research Fund.
Sadly, our story is far from over. The demand for our services remains as high as it has ever been. Treatments for mesothelioma are improving, but still there is no cure. As rewarding as it is to support some fantastic people, we hope that there will come a time when we aren’t needed.