In this issue... An Engineer s Story Benefit Entitlements Armley: The UK s Deadliest District (Part 2) Macmillan Cancer Support Profile

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1 Issue 2 October 2014 In this issue... An Engineer s Story Benefit Entitlements Armley: The UK s Deadliest District (Part 2) Macmillan Cancer Support Profile

2 Contents 2 Ask the Expert Richard Clarke answers your questions 3 Pleural Thickening Social Media round-up 4 Benefit Entitlements Disability Living Allowance explained 5 An Engineer s Story 6 Armley The UK s Deadliest District - Part 2 7 Organisation profile: Macmillan Cancer Support 8 Clinical Trials 9 Consultant Profile Dr. Jeremy Steele A Family Story Linda Reinstein speaks out 10 Treatment Centres Where to find asbestos disease treatment in the UK Welcome to the latest issue of Asbestos Justice. This month we ve brought you invaluable insights and advice from industry professionals, heart-warming stories from families touched by asbestos disease and a raft of useful information to support our community. If you would like to share your story with us, or contribute towards our next issue of Justice, please Thanks for reading and keep sharing! Ask the Expert Each month we re featuring a Questions and Answers session from an asbestos industry professional. disease can lay dormant for many decades therefore keeping a record of your exposure and regular check-ups are important. Richard Clarke is now an asbestos campaigner having previously worked as General Manager for the National Asbestos Helpline. I ve recently been exposed to asbestos, what are my options now? If you re at all concerned there are two things to consider. Firstly, make sure the source of exposure is sealed, contained or can be avoided. Your local environmental health department can offer further advice on safe removal or containment of asbestos. Secondly, inform your GP. Asbestos I live in a UK hotspot for asbestos disease. What does this mean? Certain parts of the UK are worst affected by asbestos due to the nature of the industry in the surrounding area. It mainly affects workers coming into regular contact with asbestos or asbestos products used in trades such as shipbuilding or engineering. I feel isolated following my diagnosis, where can I turn for help? There are many support groups and charitable associations able to offer support. Social media has revolutionised national networks of support and is a first port of call for many. Try reaching out to other people facing the same issues, it s always useful to share your thoughts and feelings, plus your own experiences may in turn provide support and advice for others in a similar situation

3 Social Media Round-up Asbestos Justice The Heath & Safety Executive have a wealth of useful information regarding Asbestos, it s uses, containment and removal. Please Share hse.gov.uk/asbestos/ hiddenkiller/what-isasbestos.htm If you missed it, this well written, well researched first person article was published by the Telegraph and tells the full tale of asbestos use telegraph.co.uk/graphics/ projects/asbestos-thekiller-that-surrounds-us/ index.html Making a successful claim for Pleural Thickening Mr. James Cameron of Asbestos Justice dealt with my case for asbestos related pleural thickening. My former employer s solicitors tried to argue through obtaining medical reports that my problems were connected to other things rather than the asbestos related condition. Asbestos Justice had the relevant know how to argue my case strongly. I received just under 100, of compensation and am able to return for further compensation in the future as I agreed my settlement on a provisional basis. Asbestos Justice advised me on all aspects of my case thoroughly throughout and I cannot recommend them enough for anyone suffering with an asbestos related illness. Mr T, Exmouth. IATP Asbestos Working on the tools in the trades this week? Take 5 & Stay Alive. Don t take #Asbestos home com/ Saatchi Blog post: Why I support the Saatchi Bill and why maybe you should too, ow.ly/bald4 Hilda Govmt apptd Dr Richard Judge to commercialise the HSE H&S watchdog.hazards campaign says Don t pimp our watchdog hazards.org/safetypimp/ 3

4 Benefit Entitlements There are numerous state benefits which you may be able to claim if your asbestos related disease was caused whilst in employment. Our trained experts can assist you every step of the way. Call for help & advice. Disability Living Allowance If you are suffering with an asbestos related disease, you may be entitled to claim Disability Living Allowance (DLA). If your application is successful, you could be paid between and each week to help with the extra costs caused by your asbestos related disease. You may need to undergo an assessment through your local benefit agency to see if you are entitled to this benefit. Am I eligible to claim DLA? If you are aged under 65 and have experienced difficulties in walking or require help in looking after yourself for 3 months and expect to have them for at least 6 months, you may be entitled to claim for DLA. What will I receive if my application is successful? Successful applicants for DLA will receive varying amounts of money, made up from 2 component parts, called the care component and the mobility component. Care Component This part of the benefit can be paid to asbestos disease sufferers if they:- require assistance with day to day tasks such as eating and preparing meals, using the toilet, dressing, washing etc are terminally ill require supervision to avoid putting themselves and others in substantial danger The lowest rate payable is per week and this can be paid to sufferers who require some light assistance, perhaps with preparing cooked meals. The middle rate payable is per week and this can be paid to sufferers who require regular help and supervision during the day or night. The highest rate payable is per week and this can be paid to a sufferer who requires help or supervision throughout the day or night or to those who have a terminal asbestos related illness such as mesothelioma. Mobility Component This part of the benefit can be paid to asbestos disease sufferers who, when using a normal aid:- are unable to walk can only walk short distances without suffering severe discomfort could become very ill if they try to walk People may also receive the benefit if they:- have neither feet or legs are assessed as 100% blind and at least 80% deaf and require assistance outdoors require supervision when outdoors are certified as severely sight impaired are severely mentally impaired with behavioural problems and receive the highest rate of care for DLA The lowest rate payable is per week and can be paid to sufferers who require general supervision outdoors. The highest rate payable is and can be paid to sufferers who experience severe difficulties in walking. All sums of benefits will be paid directly into your bank or building society account. For further information on claiming DLA, please contact the benefits team at Asbestos Justice on To assess your eligibility please contact Asbestos Justice on

5 We dealt with an urgent mesothelioma claim for a 92 year old gentleman called Mr. S who was diagnosed with mesothelioma during June of Mr. S worked for Stein Atkinson Limited as a design engineer between 1944 and The company later traded under the name of Solios Thermal Limited. His role within the company involved designing furnace equipment which would regularly have to be lined with asbestos materials in order to fireproof the furnaces. He was often nearby when the manual workers drilled and nailed the asbestos into place resulting in him coming into contact with asbestos dust on a regular basis. Whilst Mr. S never worked directly with asbestos, he was exposed on a passive basis which led to him developing mesothelioma during later life. The case successfully settled during Mr. S lifetime, having been run over a 5 month period. The case was unusual as Mr. S survived with symptoms for over 3 years before sadly passing away due to the condition. An Engineer s Story Mesothelioma Concerned about asbestos exposure? Call our expert team on Photo by Asbestorama 5

6 Armley The UK s Deadliest District (Part 2) The People of Armley Home to some 1500 residential houses and a population of 6,734 in the 1870s, Armley s residents found themselves living next to what would be the biggest Mesothelioma threat in the UK. The nearest school located to the factory was the Armley Board School (later to become Armley Council School) and referred to by the locals as The Clock School. The school was built in 1878 at a cost of 13,108 and its clock tower became a local land mark. A former student recalls her memories of the asbestos at school: I went to Armley Clock School whose back school yard was only about 10 yards from the open door of Roberts. The dust would fly about and blow into the school yard. I remember some of the kids getting hold of big chunks of it and wrapping it around their chins and pretending to be Santa Claus. No one told us how dangerous it was in those days Photo by Camera Shy The spine-chilling sense of reality wasn t apparent for the innocent in those days. They played hand-inhand with some of nature s cruellest creations, released by the blind greed of man and manufactured by our own fathers. All were unaware of the evil disguised behind its fluffy exterior. A wolf in sheep s clothing if you must. Photo by Urbandegeneration.com

7 No one should face cancer alone. So when you need someone to turn to, we re here. Right from the moment you re diagnosed, through your treatment and beyond, we re a constant source of support, giving you the energy and inspiration to help you take back control of your life. As treatments improve, more and more people are living with cancer in their daily lives. This means they need more than medical help, they also need practical, emotional and financial support. We are a source of support We are a source of support, helping with all the things that people affected by cancer want and need. It s not only patients who live with cancer; we also help carers, families and communities. We fund nurses and other specialist health care professionals and build cancer care centres. But we give so much more than medical help. People need practical support at home, so we provide anything from some precious time off for a carer, to a lift to hospital. People need emotional support, so we listen, advise and share information through our cancer support specialists, website and trained professionals. People need financial help to cope with the extra costs cancer can bring, so we give benefits advice, and grants for anything from heating bills to travel costs. Together we listen, we learn, we act to help people live with cancer. We are a force for change We are a force for change, listening to people affected by cancer and working together to improve cancer care. People who live with cancer are experts by experience. Together we use this knowledge to make a positive difference to the lives of people affected by cancer. This could be anything from getting a coffee machine installed in a waiting room, to bringing about changes in the law. We fight discrimination from challenging unfair travel costs and insurance policies to improving the national benefits system. Together we challenge the status quo, we push for change, we lead the way. We believe we can all help. We can raise money through marathons, coffee mornings, street collections, sponsored events. We can give time at cancer care centres, events, and fundraising groups. We can share experiences online, in the media, with each other. We are Macmillan. Donate To donate your bit to Macmillan visit donate. You can also follow us on 7

8 Clinical Trials This month we are featuring MESO 2. A trial of ganetespib with pemetrexed and cisplatin or carboplatin for pleural mesothelioma. This trial looks at a drug called ganetespib alongside standard chemotherapy for mesothelioma in the covering of the lungs. The trial is supported by Cancer Research UK. In this trial, researchers want to see if they can improve the treatment of pleural mesothelioma by adding a drug called ganetespib. Ganetespib is a type of biological therapy called a heat shock protein 90 inhibitor. It stops signals that cancer cells use to divide and grow. The aims of this trial are to: Find the best dose of ganetespib to give alongside pemetrexed and cisplatin or carboplatin See how well this combination of drugs works as treatment for pleural mesothelioma Trial Design This trial is in 2 stages. The first stage is a phase 1 trial. The researchers want find the best dose of ganetespib to give with pemetrexed and cisplatin or carboplatin. To do this they will give the first 3 people a low dose of ganetespib with the usual doses of pemetrexed and cisplatin or carboplatin. If they don t have any problems, the next 3 people have a higher dose of ganetespib. And so on, until they find the best dose to give. This is called a dose escalation study. The second stage is a phase 2 trial. It is randomised. The people taking part are put into treatment groups by a computer. Neither you nor your doctor will be able to decide which group you are in. Group A have ganetespib, pemetrexed and cisplatin or carboplatin Group B have pemetrexed and cisplatin or carboplatin You have ganetespib, pemetrexed, cisplatin and carboplatin as a drip into a vein. You have pemetrexed and cisplatin or carboplatin once every 3 weeks and ganetespib twice every 3 weeks. Each 3 week period is called a cycle of treatment. You can have up to 6 cycles. If you are in the group having ganetespib, after 4 cycles of treatment your doctor may talk to you about continuing with ganetespib only, if they feel you are benefiting from it. The researchers will ask for blood samples and a sample of tissue from the biopsy you had to diagnose your mesothelioma. They will use these samples to find out more about mesothelioma and how to treat it. If you don t want to give these samples for research, you don t have to. You can still take part in the trial. Trial Details Recruitment: Start 21/08/2013 End 31/01/2015 Phase: Phase 1/2 Chief Investigator: Professor Dean Fennell Full Credit: Cancer Research UK

9 Consultant Profile Dr Jeremy Steele MD MRCP Jeremy is Co-Director of Bart s Mesothelioma Research. He is a Consultant in Medical Oncology at St Bartholomew s Hospital, the Royal London Hospital and the London Chest Hospital. He qualified in medicine at St George s Hospital, London in After training in general medicine and intensive care, he moved to the Royal Marsden Hospital where he treated his first mesothelioma patient. At the Institute of Cancer Research he undertook doctoral research into paediatric leukaemia and brain tumours. Jeremy moved to Bart s in 1997 where he has worked closely with Robin Rudd ever since. In 2000 he was awarded the Royal Society of Medicine Sylvia Lawler Prize. Jeremy is a member of the Board of Directors of the International Mesothelioma Interest Group and numerous other mesothelioma clinical and research groups in the UK and abroad. Contact Dr Jeremy Steele bartsandthelondon.nhs. Credit: Mesothelioma.co.uk Linda Reinstein (ADAO) talks... Grief is never-ending. As I prepare to present at the XX World Congress on Safety and Health at Work in Frankfurt, Germany I am reminded of the human cost of inaction. Since Alan was diagnosed in 2003, an estimated 100,000 Americans have died from preventable asbestos-caused diseases. Worse yet, in the past decade, the USA has imported more than 21,000 metric tons of asbestos, and imports still continue to pollute our country with this deadly substance. While promising research continues, prevention remains the only cure. I dedicate my presentation Progress and Challenges in Increasing Worker Safety and Mitigating Asbestos Exposure in the Americas to Alan and the hundreds of thousands of other Alans. Through our stories, we can turn our anger into action, and tell the true story about asbestos as we fight to end this deadly man-made disaster. Together, change is possible. Linda Reinstein, President/CEO and Co-Founder, Asbestos Disease Awareness Organization (ADAO) 9

10 Treatment Centres If you have been diagnosed with an asbestos disease, finding the right help can be difficult. We have compiled a list of some of the UK s top treatment and trial centres for asbestos diseases. Many have been recognised for their survival success rates and pioneering treatments, so you ll always be in safe hands Christie Hospital NHS Trust (Manchester) 2. Glenfield Hospital (Leicester) 3. Papworth Hospital (Cambridge) 4. Derriford Hospital (Devon) 5. Basingstoke and North Hampshire Hospital (Basingstoke) London Hospitals 6. Guy s Hospital 7. The Royal Marsden Hospital 8. St. Bartholomew s Hospital

11 1. Christie Hospital NHS Trust 550 Wilmslow Road, Withington, Manchester M20 4BX. Telephone: The Christie Hospital NHS Trust is the largest single-site cancer treatment centre in Europe, and offers services including diagnosis, treatment and general care for cancer patients, as well as cancer education. Website: Glenfield Hospital Groby Road, Leicester, Leicestershire. LE3 9QP Telephone: Respiratory and Cardiothoracic Centre, Mesothelioma Centre and home to Mesothelioma UK and Professor Dean Fennell. The specialist lung cancer centre has excellent lung cancer survival rates and an extremely active research programme. Website: 3. Papworth Hospital Papworth Everard, Cambridge, Cambridgeshire CB3 8RE. Telephone: Papworth Hospital is the largest international specialist Cardiothoracic (heart and lung) hospital in the UK and includes the country s main heart and lung transplant centre. Also provides a Mesothelioma support service. Website: Derriford Hospital Derriford Rd, Plymouth, Devon PL6 8DH Telephone: Derriford Hospital is a large teaching hospital in Plymouth. It is one of three hospitals approved to conduct Mesothelioma trials. Website: Contact form online 5. Basingstoke and North Hampshire Hospital Aldermaston Road, Aldermaston Road, Basingstoke, Hampshire, RG24 9NA. Telephone: Centre for specialist treatment of Peritoneal Mesothelioma. Home to Consultant Colorectal Surgeon Dr. Faheez Mohamed and Hyperthermic Intraperitoneal Chemotherapy (chemo bath). Website: Guy s Hospital St. Thomas Street, London, Greater London SE1 9RT. Telephone: Guy s Hospital offers some of the top cancer specialists in the country, the very latest state-of-the-art facilities and pioneering treatments, thanks to their extensive research programmes. Website: The Royal Marsden Hospital Fulham Road, London, Greater London SW3 6JJ. Telephone: The Royal Marsden, together with its academic partner, The Institute of Cancer Research (ICR), is designated as the UK s only National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) dedicated solely to cancer. Provides both trials and treatments. Website: Contact form online 8. St. Bartholomew s Hospital West Smithfield, London, Greater London EC1A 7BE. Telephone: St. Bartholomew s Hospital (Barts), is a leading, internationally renowned teaching hospital based in the City of London. It is the centre for Mesothelioma research (UK wide). Home to Dr. Rudd and Jeremy Steele (Chairman of Mesothelioma UK). Website: Contact form online 11

12 Asbestos Justice, Douglas House, 117 Foregate Street Chester, Cheshire, CH1 1HE Rest assured, you re in safe hands. Keep in touch on Facebook: Follow us on Twitter: Connect with us on LinkedIn: Asbestos Justice is a trading style of Oliver & Co Solicitors Ltd Douglas House, 117 Foregate Street, Chester, Cheshire, CH1 1HE. Telephone

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