Friday 2nd October 2015 marked Mesothelioma UK Patient and Carer Day 2015. The event took place at Macdonald Alveston Manor, Clopton Bridge in Stratford-upon-Avon.
To describe it I would say for once there may be hope. That was the feeling I came out with after spending the day at the Mesothelioma Patient and Carer Day 2015.
I have attended many of these conferences and it was lovely to see the familiar faces of Liz Darlinson and her colleagues who year on year work so hard to support and make life easier for Mesothelioma sufferers and their families. I have listened to many speakers and found it all very interesting but this year was, in my opinion, quite exceptional.
There were so many varied topics being covered, all relevant to the audience no matter who you were or why you were there.
The day started so positively hearing from Professor Dean Fennell and Research Nurse, Louise Nelson, on the progress and success of trials currently taking place to help cure this dreadful disease. I would urge anyone who is remotely interested in participating in trials to find out more via Mesothelioma UK. I know it isn’t always possible and suitable for everyone, but it is wonderful to see how it has helped some people so much already. For once there was a feeling of hope for the future that gave us all a spring in our step.
I always have mixed feelings hearing from the sufferers and their families about what has happened to them. I am grateful to hear their account of what has happened first hand, but sadness and anger that they have had to go through such terrible times. This year was no exception and listening to the stories of Josephine McLaren and Mavis Nye, how and when they were diagnosed and their journeys to where they are now, was particularly heartrending. It is well known that Mesothelioma does not just affect the sufferer but many family members surrounding them.
Unfortunately, it is still a bit of a postcode lottery when it comes to which services are available to everyone around the country. The one thing that comes across is the strength people gain from the Meso Warriors support. By using social media, sufferers and their families are able to help and support each other emotionally throughout the world, leaving them feeling less isolated and able to find out more about available treatments.
There was a wealth of information from other speakers. Paul Cook, consultant in palliative care and anaesthesia gave a wonderfully interesting and down to earth presentation on the pros and cons of pain relief by a procedure called Percutaneous Cordotomy. He has now retired from this area of work but has passed on all his knowledge and experience to Dr Julian Scott. If anyone is interested in this, more details can be obtained from Mesothelioma UK.
Greg Byrne of RB Asbestos Consultants raised more awareness of where asbestos can be found in the UK, but also highlighted the continuing ignorance of the general public as to its dangers. It is quite frightening to know that so many people are still unaware of the dangers lurking around us.
Laurie Kazan-Allen, a long standing campaigner amazed us with the latest developments going on around the world to try and ban asbestos. It is a very long slow process but progress is being made.
Caroline Barry, who is now employed as a National Benefits Adviser for Mesothelioma UK, was able to enlighten the audience about their entitlement to various benefits and allowances. Some people have support with their applications from various victim support groups, but there are still gaps in the country where this kind of help is limited or in some cases not available.
Towards the end of the day was a heart-warming story from a very motivated and enthusiastic young man called Ross Williams who inspired us all with his energy and drive in fundraising. Ross’s father died of Mesothelioma when Ross was only 18. Now at the age of 29 he was keen to raise funds to help others. He managed to run seven marathons in seven days and, using his skills and experience as a headhunter, he found the right people in the media to contact and explained to us all how to go about it if we were fundraising in the future.
Liz Darlinson ended the day by giving us a very heartening update on the work of Mesothelioma UK. Various facts and figures from recent surveys were given, e.g. 76% of sufferers are referred to a lung cancer nurse and 52% had a lung cancer nurse present during diagnosis. This is a great deal better than in the past, but as Liz said, there is still a lot of room for improvement in certain geographical areas of the country.
It was interesting to note that the average age of someone being diagnosed with mesothelioma is 73 and 83% are men. I also found it very interesting that Mesothelioma is far more common in the right lung than the left but no-one is quite sure why.
All in all, it was a very informative and positive day and I am proud that Slater and Gordon sponsored this very important event. I very much look forward to being able to continue supporting sufferers and their families, particularly in the Kent area where I live and work.
Alison Blake is Slater and Gordon’s Asbestos Support Worker.
Our expert asbestos lawyers will be present at Mesothelioma UK Patient and Carer Day 2015 for an informal chat and to answer any questions or queries regarding the legal aspects of Mesothelioma and exposure to asbestos.
If you were unable to attend the event and have a legal question or query regarding Mesothelioma or asbestos, call the expert Chest and Asbestos Disease team at Slater and Gordon Lawyers on 0800 844 0275 or contact us online.