Mesothelioma. Action Mesothelioma Day 5 July P a g e

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1 Mesothelioma Action Mesothelioma Day 5 July 2013 and March In Wales the shocking statistic of 200 deaths from diagnosed asbestos related illnesses per year cannot be ignored it is more than annual deaths from road traffic accidents. Diagnosis of mesothelioma is a challenge; awareness of the consequences of exposure to asbestos throughout Wales is a challenge. Much work needs to be done stop thinking it can t happen here it already has!! From the valleys of Wales to the mountains of North Wales across the coastline of West Wales and the lush countryside of mid Wales to the industries of South Wales there are victims who have died and some who are still living with the fatal disease of mesothelioma. From the editor Lorna Johns, AASC Mesothelioma is not a new disease it can take a long time to develop usually around years. It is a cancer which usually affects the lining of the lung (pleura) but it can also occur in the lining of the abdomen (peritoneum) and the heart (pericardium). The only known cause to this illness is the exposure to asbestos dust. For many years owners of industry knew about the harmful effects caused by exposure to asbestos yet the substance continued to be used in the workplace until the mid late 1970 s in the United Kingdom. In many countries today its uses are still not banned and global campaigning is in action to stop the dangerous and reckless use of asbestos. It can damage your health. For more information on global work follow Mesothelioma shows no discretion in the age of its victims and it is does not discriminate through first hand exposure, that is working directly with the dust, relatives have developed the disease through second hand exposure, inhaling asbestos fibres through the washing of overalls, sitting on the laps of fathers who unknowingly carried fibres on their bodies. Once the asbestos has been disturbed then its effects when inhaled have proved to be fatal. There has been a steady rise in the number of deaths from asbestos related diseases in the United Kingdom with 2,347 detailed in There are more deaths to come as the legacy of asbestos rears its head through the workings of the fibres through the bodies of workers with Lord Freud, Parliamentary Under-Secretary of State in May 2013 expecting roughly 28,000 deaths from mesothelioma between July 2012 Update on Asbestos Bill Recovery of Medical Costs NHS, Wales Mick Antoniw, AM, National Assembly for Wales. As many of you will know, I have been working with Unite and other trades unions and Labour assembly members to bring a private members bill on Asbestos. The help from the Union and former colleagues from Thompsons solicitors has been invaluable. Of considerable importance is the help and support I have received from Asbestos Awareness and Support Cymru. AASC plays a crucial role in giving support to asbestos victims and their families from people who understand what they are going through. The Bill is drafted and tabled and completed the first two stages of the legislative process. The aim of the Bill is to allow the Welsh Government to recover the full cost of medical treatment received, from those who caused the disease. It is intended the money raised which could be around a million pounds a year will be used to provide additional help and support to asbestos victims and their families. For example the money could be used to provide additional cancer nurses, counsellors and research. Ultimately this will be up to the government. Trades unions have been lobbying individual assembly members to support the bill which is 1 P a g e

2 opposed by the Conservatives and the Association of British Insurers. The Liberal Democrats have not yet made it clear whether they will support or oppose the Bill. If you have not yet done so please contact your assembly member to support the Bill. Wales is the first legislature to bring forward this type of legislation to help asbestos victims and is an example of what can be achieved when we work together. It is hoped the bill will complete its passage in The Swindon Disease Working on the railways and the railway building industry in Swindon has left its legacy in the form of asbestos related illnesses. Asbestosis, mesothelioma, and diffuse pleural thickening. Asbestos has been present in the railway industry both as a material used in the construction of locomotive and carriages and as a product transported on trains. Retired railway workers have stories about unloading asbestos filled hessian sacks, describing the asbestos as looking like cotton wool. The bags often split leaking out the deadly asbestos dust onto the overalls of the railway workers. Carried on the trains would be asbestos pipes, insulation boards, rope, brake linings, sheeting and pre fabricated insulation pipes. In the 1930 s to the 1960 s the maintenance and building of wagons and engines involved the use of asbestos being used to insulate boilers, mains and gaskets and later to insulate the carriages. Asbestos was used to heat proof and sound proof the carriages. It was inevitable that workers breathed in the asbestos fibres and that years later cases of mesothelioma hit the town of Swindon thus generating the name the Swindon Disease. of deaths. Asbestos continues to be present in our lives despite knowledge of its lethal tendencies since at least 1900 s. Devil s Dust In Australia in 2011, Jane Krsevan, discovered the reason for the stabbing back pains and the excess fluid in her lungs at the age of 45. She was found to have malignant mesothelioma 40 years earlier she inhaled the devils dust as she watched her father cut up asbestos cement sheeting in the garage. Some of the famous who have died from Mesothelioma Victims of death by mesothelioma have been carpenters, builders, builders, plumbers, wives, daughters, teachers, actors, police officers, politicians. Michael Coney (Science fiction writer); Ian Cundy (British Bishop); Ron Cyrus (Grandfather of Miley Cyrus pop singer/actress); Ann Ebsworth (Barrister and Judge); Paul Gleason (Actor); Christie Hennessy (Irish Singer); George Hunt (Swindon footballer); John Macdougall ( Scottish Labour Politician); Malcolm McLaren (Manager of group Sex Pistols ); Steve Mc Queen (Actor); Danny Moss (British Jazz saxophonist); Mickie Most ( English record producer). Getting Compensation A network of law firms and specialist lawyers have valuable experience to fight the case to gain compensation for those who have acquired mesothelioma from working with asbestos. Killer Dust Asbestos was known as the magic mineral because it could withstand the power of flames. This mystical name then gave way to the phrase killer dust because it was recognised as being responsible for thousands Many families in Wales, whose relatives have died after being exposed to deadly asbestos fibres, will be denied compensation by a newly announced United Kingdom government scheme. Asbestos is the biggest industrial killer in the world. Every day it causes disease amongst carpenters, joiners, electricians, fitters, 2 P a g e

3 plumbers, heating and ventilation engineers, and painters and decorators. The Queen s Speech on 8 May 2013 announced the Mesothelioma Bill as part of the Government s legislative programme for next year. The Bill is to create a payment scheme for sufferers of mesothelioma a terminal cancer of the lung lining - when their employers, who negligently exposed them to asbestos, and their insurers who gladly collected premiums, cannot be traced. It is good news that the fund has been set up but there are many who will be losing out. Currently, nearly 2,400 people - mainly men - die from mesothelioma every year in the UK. They and their families get nothing when insurers cannot be traced and their employers no longer exist. This injustice should be remedied. The proposed scheme, however, falls far short of what is needed. It limits the payments to only victims of mesothelioma and will do nothing to help those suffering, and dying, from other asbestos related illnesses. Those with asbestosis, pleural thickening and even lung cancer, who constitute 50% of asbestos sufferers, will get nothing. In addition, only those diagnosed from 25 th July 2012 will be eligible to make the claim. Finally, the payments to be made will be only 70% of average compensation levels. What should be done is to set up an Employers Liability Insurance Bureau which would then pay victims in full. Insurers should not benefit from their ineptitude in losing policies. Why should asbestos sufferers be treated worse than motorists, who are paid in full when injured by an uninsured or untraced driver? Asbestos Risks Fact or Fiction Brian Fact: The annual number of mesothelioma deaths in the UK is increasing, with 2,347deaths in 2010 compared with 153 in The expected number of deaths amongst males is predicted to increase to a peak of 2,038 in the year But there is no public outcry, no publicity, and no calls for a period of public mourning - only a passing that will only have a profound effect on the victim s immediate family and friends. This is because victims of asbestos do not suffer a single catastrophic event. There is no smoking gun, no blood on the floor. Colleagues are not forced to witness the carnage of a horrific workplace accident. Instead the victim simply breathes in deadly fibres that can take up to 40 years for them to unleash their misery. As a consequence our minds convince us that; Fiction: there is little risk and the consequences are being exaggerated by over enthusiastic health and safety people and the I ll be ok syndrome. Fact: This leads to a complacency in both employers and employees which undermines the very real threat that these fibres present. So, how do people get exposed to asbestos fibres? Firstly we need to understand its uses and what it is. Asbestos is a group of minerals that have excellent insulation and fire protection properties and was used widely in construction before eventually being fully banned in the UK. It was used in artex, floor tiles, drain pipes and gutters, ceiling tiles and AIB boards to name a few. It is important that elected Members of Parliament are aware of the anguish and pain inflicted upon families by exposure to asbestos in the workplace so that the Mesothelioma Bill in Westminster can be amended. 3 P a g e

4 Right to Know: Asbestos in Schools Wales Cenric Clement - Evans In early 2012 the All Parliamentary Group on Occupational Health published its booklet on Asbestos in Schools. It was clear that something needed to be done in Wales as well, with devolved powers not least relating to Education and Health. Photos: courtesy of the HSE. Fact: These products have been in position for many years and present day tradesmen will often use high speed drills or saws to access or cut through these materials. This releases thousands of fibres that can be breathed deep inside the lungs (respirable fibres) where they will remain as the body has no mechanism for expelling these. Over a period of time these fibres cause disease which can turn malignant and there is no cure for asbestos related diseases or cancers. So obviously prevention is best as there is no cure. What can be done to protect workers? Fact: Employers are required to conduct surveys to see if they have asbestos in their premises and if so, have it sampled to see what type it is and then compile an Asbestos Management Plan, which all workers must be made aware of if they are going to be working on it or if they may come into contact with it. Employers must also then regularly check that the asbestos is still in good condition and take any remedial action if necessary. Employers are also required to train all employees who may come into contact with asbestos, so that they may identify it and know what precautions to take should they expose it. Fact: Asbestos does kill. If you are unsure if you have asbestos at work ask your employer. The booklet stated that 75% of schools in Britain contain asbestos. The Minister for Education and Skills was asked the simple question, how many schools in Wales contained asbestos. Surprisingly the answer that came back was that asbestos in schools was a matter for local authorities and the HSE. Clearly this wasn t good enough, and it spurred us on and The Right to Know: Asbestos in Schools Wales campaign was born. A website was created, and petition set up on the National Assembly website and the campaign was ready for launch when suddenly, in early October, Cwmcarn High School was closed. The whole issue of asbestos in schools was thrust into the glare of the media spotlight. A major concern for us in Wales is who is taking responsibility of the issue. In England the Department for Education (DfE) working in conjunction with the HSE, produced an on-line Guidance on Asbestos Management in Schools. However, they do not apply in Wales and the Right to Know has been asking the Minister to implement them. In March the Education Select Committee heard evidence on Asbestos in English schools. There has been no such hearing in Wales. A Committee on Cancer has reported to the DfE that children are more vulnerable to the effects of asbestos. Will Welsh Government respond to this report? On the 30 th April the First Minister stated in the Senedd, It should be pointed out that there is no suggestion that there is any danger to children in schools in Wales. It is known that if asbestos is undisturbed, it is safe. Spending almost 2.5 million on Cwmcarn High would suggest otherwise. The HSE, whose advice the First Minister is clearly heeding, advised that the school was safe, despite considerable evidence to the contrary. (Their final report is still awaited.) 4 P a g e

5 On the same day at a reception hosted by Right to Know at the Senedd, David Evans now President of Wales TUC Cymru, stated that Welsh Government had a moral responsibility to ensure that schools in Wales are safe places for our children and for those working there. Right to Know agrees. To find out more about the campaign and how you can support, please visit The Asbestos Register Eamonn McDonough, Regional Head of Asbestos Wales, Thompsons Solicitors they and their families can access this years later. Indeed, with the consent of the clients concerned, this database can also be of benefit to their working colleagues, exposed in the same circumstances or same place of work, should they too have the misfortune to develop such an illness and need to make a claim in the future. The information we have collected over the years about previous asbestos claims - and indeed details of employers liability insurers for companies which are no longer trading has proved, with our specialist expertise, to be very effective in gaining justice for working families where otherwise they may have gone without. As AASC say, it is all about providing victims of asbestos with a structured network of help and support. Together we are stronger. The Coroner and Mesothelioma Thompsons Solicitors have acted for decades for asbestos victims. We have won ground breaking cases in the field, including the first ever successful compensation claim in We remain the most experienced claimant personal injury firm in the country. With the valued support of trades unions and asbestos support groups, our specialist lawyers recover every year many millions of pounds to ensure that families affected by asbestos diseases are made financially secure. In doing so, we also understand the importance of treating our clients with compassion, dignity and respect. Asbestos diseases take many years to develop after exposure. In that time, memories fade and potentially valuable documents proving exposure disappear. People move homes. Workmates are lost contact with. But it must be still proved that the party to be sued was legally at fault. To enable us, therefore, to fight hard for the innocent sufferers of asbestos disease, Thompsons Solicitors have for many years maintained an extensive and totally secure exposure register for the many members of unions we work for and our private clients. By doing so, we are able to record for these men and women who may have been exposed, but possibly not yet suffering from an asbestos illness, the details of their work so that, should unfortunately the worse come to the worst, The coroner regards mesothelioma as an unnatural death. When a victim dies from mesothelioma the death will need to be reported to the local police, and sometimes a hospital may request an autopsy so the pathologist can prepare a post mortem report. This report may be used in a civil compensation claim. The coroner will require strong evidence that the death was caused by the effects of asbestos. The procedure following death has been a very distressing one for families, with many feeling a sense of guilt when the police have been contacted. Work is ongoing to ensure that this very emotive and precious time is handled with greater sensitivity. Being there Joanne-Barnes-Mannings, AASC I am usually the voice at the end of the phone, the listening ear for families living with mesothelioma. Each family has differing needs, one of our earlier cases came through to AASC from a referral from a benefits advisor. We 5 P a g e

6 were able to signpost to a free complementary therapist service and to hospice at home nurses and carers. Every moment shared with a loved one is treasured and the need to enjoy quality time is of paramount importance, AASC saves the time of the carers by locating the best services nearest to them. It is only when faced with a terminal illness that you have the need to find services and it is all new, strange and confusing, AASC helped this family through the maze. How do we measure the impact in providing the patient with a sense of independence and a solution to a practical problem by providing the links to free equipment loan service? I made weekly calls to the family and felt deeply privileged to be told You have become the friend I truly needed at this time. It is so reassuring to talk to someone who has been through a similar experience. The practical tips you have given me have been priceless and have made a huge difference to our lives and also tell me that you ve been there and know what we are going through. Thank you. As well as the telephone support the carer has met me on a one to one and has been invited to join up with the regular supportive friendship groups. Introducing AASC as soon as possible to someone with a diagnosis of mesothelioma enables support to take effect as soon as possible. The Mesothelioma Charter This charter calls for faster diagnosis, better treatment and care services, more funding for research and measures to prevent future asbestos exposure. Mesothelioma patients and their families have a right to 1)A speedy and accurate diagnosis, supported by a multi-disciplinary team discussion. 2) Good quality information from a variety of sources available in different media and languages 3) Support of a suitably qualified nurse and other Multi-Disciplinary Team members throughout their illness 4) Be considered for the best possible treatments available with the support and input of a Multi-Disciplinary Team 5) Have up to date advice on benefits and help in applying for them and receive prompt payment of benefits 6) Have legal advice and guidance from a firm of solicitors experienced in mesothelioma claims 7) Guidance on end of life decisions and care at home 8) Provsion of consistent nationwide servcei from coroners using a clear and open process with a maximum case length of 3 months. 9) Have mesothelioma made a national priority 10) Fund good quality research, alongside other national boide, on mesothelioma with a view to improving diagnosis, treatment and outcomes for patients 11) Support the production of clinical guidelines on the best practice of diagnosis and management of mesothelioma 12) Ensure the Health and Safety Executive vigorously enforce existing regulations on asbestos. Employers: 13) Prevent future exposure to asbestos by providing a safe working environment with all the necessary equipment to protect employees 14) Work with unions and individuals to ensure enforcement of current reguloations to safeguard all employees. 15) Identify all asbestos in their properties and organise its safe removal where practical or necessary when work is carried out. Teen of 18 dies from Mesothelioma Sophie Ellis of Suffolk died at the age of 18 years being diagnosed with mesothelioma at the age of 13. Most victims are of an older age and it is unclear how Sophie contracted the illness. A judo injury causing a one sided chest pain first sent her to the doctors and then the mesothelioma developed. The United Kingdom has the highest per capita rate of mesotheliomas deaths in the world, one death every five hours!. 6 P a g e

7 Mesothelioma UK This is a UK wide national resource centre dedicated to providing specialist mesothelioma information, support, improved care and treatment. Further information can be found at This organisation has helped to secure funding for 2 years for the first specialist mesothelioma nurse for South Wales, Naomi Horne. She works closely with the network of 22 lung cancer nurses across Wales. Hospices and Mesothelioma Hospices can provide additional care to the family living with a diagnosis of mesothelioma either through providing a nursing service directly in the home or through gentle care in a purpose built hospice. Families who make a claim for compensation can also demonstrate their appreciation of the hospice care by recovering the costs generated for the caring of the mesothelioma victims. The funds generated for the hospice will be used to provide care for others. Only the family can put in the claim the hospice cannot do it themselves, but the process is very simple and a specialist solicitor can help. Action for Mesothelioma This bulletin is a personal collection of articles brought together to help raise awareness about the cruel effects of the inhalation of deadly asbestos fibres. AASC is a relatively new support group for Wales. As we reach across to those who need our help we give our respect to those who have been working in the asbestos campaign and support for much longer. Our thoughts go to Debbie Brewer, Meso Warrior, Plymouth, who recently lost her battle with mesothelioma and to Mavis Nye who continues her fight having developed mesothelioma from washing the overalls of her husband who worked in a Naval Dockyard. Get Wales Talking AASC AASC is reaching across Wales to offer support to victims of asbestos related illnesses including mesothelioma. We are highlighting the best services available within Wales. Together as one we can make life a bit better for victims and raise awareness about the dangers of asbestos. Together, united we can make a huge difference. We can get Wales talking AASC! Tel No: Facebook: Asbestos Awareness & Support Cymru Registered charity No: Any errors lie with me as editor and I apologise in advance should you come across them. Thankyou to those who volunteered to make a written contribution. Onwards and forwards in the support to victims of asbestos exposure, the clock continues to tick. 7 P a g e

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