In this issue... The Saatchi Bill A Medical Revelation Mavis Nye s Story Testicular Mesothelioma Charity Highlight Age UK. Issue 6 February 2015

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1 In this issue... The Saatchi Bill A Medical Revelation Mavis Nye s Story Testicular Mesothelioma Charity Highlight Age UK Issue 6 February 2015

2 Contents 2 Patient Perspectives Your questions answered 3 The Saatchi Bill - A Medical Revelation 4 Benefit Entitlements Attendance Allowance 5 Charity Profile - Age UK Social Media Who to follow 6 My Story - Mavis Nye 8 Testicular Cancer - Fighting Against a Rare Condition 10 Armley The UK s Deadliest District - Part 5 11 Treatment Centres Where to find asbestos disease treatment in the UK Subscibe If you would like to subscribe to our FREE Justice newsletter, please Contribute If you would like to share your story with us, or contribute towards our next issue of Justice, please Welcome In this issue we discuss the importance of the recent government-backed Bill, The Medical Innovation Bill, also known as The Saatchi Bill. Many of the public and certain health professionals viewed the movement as controversial and encouraging irresponsible experimentation. Because of this, we felt a feature explaining why the Bill was created, what it will affect and who the Bill will be for, would help bring you further up to date with the story. We are also highlighting Testicular Mesothelioma, a rare form of this disease and a topic barely discussed due to lack of scientific research and knowledge. Find out more and how we can help on page 8. Last but definitely not least, Mavis Nye, notable Meso warrior, tells her personal story about her journey and constant fight against mesothelioma. We sincerely hope you enjoy this month s issue. Thank you for reading and keep sharing! Helena Cameron Helena Cameron. Asbestos Justice Associate Director An apology Asbestos Justice would like to issue an apology following the Christmas edition of Justice and the inclusion of the profile of Dr. Robert Rintoul on page 10. Neither Papworth Hospital nor Dr. Rintoul has any connection or association with Asbestos Justice and neither has ever endorsed or approved our services. Ask the Patient Each month we re featuring a Q&A session from members of the asbestos community. What makes a good doctor or nurse? Talking to you and explaining your disease and how they can treat you. Treat you as a person and not just a number. Give you time to ask all the questions you need to so you really understand what is happening. Quoting Sister Donna Keenan Nurse of the year 2010 A great doctor knows and remembers his/her patients and treats them with a kind heart and gentle hands as if they were one of their own family, dedicating their working life of service to creating and preserving health

3 The Saatchi Bill A Medical Revelation Lord Saatchi What is the Medical Innovation Bill? The Medical Innovation Bill will allow doctors to treat patients who are suffering from cancer and other diseases by using innovative new treatments and cures. The bill will lift a barrier for doctors and patients who wish to become innovative in trying to find a cure or the best treatment for their illness. Many patients who suffer from a disease such as mesothelioma currently do not have a cure but are determined to try any treatment that might pave the way to a cure. As explained by the Medication Innovation Bill website, the law currently supports standard treatment given to patients by doctors despite some cases proving standard treatments lead to poor quality of life and even death. The Bill is sponsored through parliament by Lord Maurice Saatchi and has been drafted with input and guidance from eminent clinicians, lawyers and judges including Lord Woolf, Former Master of the Roles and Lord Chief Justice and leading Professors from the Oxford School of Medicine among others. Why was the Medical Innovation Bill created? (Extract from Website) Lord Saatchi s wife, Josephine Hart, died in July 2011 from a form of ovarian cancer. Moved by grief, taxed by the treatment his wife had to endure and shocked by the lack of progress made in treating and curing gynaecological cancers, Lord Saatchi sought to act. He felt that more progress needed to be made and could be made in finding new treatments for cancers and other diseases and conditions. His research discerned that one brake on progress was the fear doctors have of trying new techniques where old techniques have failed. This fear is a result of law suits which can be brought against doctors who deviate from standard procedure. All innovation is, by definition, deviation. The law protects those who tread the well-worn path and can punish those who don t. What effect will the Bill have? The difference between medical negligence and careful, reasonable innovation will be of greater clarity to medical doctors, patients and judges. The Bill will have two effects: 1. It will allow good doctors who have the best interests of their patients at heart to innovate safely and responsibly, with the consent of the patient as long as they follow the transparent and accountable procedure that the Bill requires. 2. It will expose doctors practicing illegally or independently and not following correct medical procedures. Genuine doctors will be fully protected from any clinical negligence claims against them as long as they have followed the correct procedures as stated by the Medical Innovation Bill. The Bill has adopted a transparent procedure which highlights clear accountability; this involves consultation between a team of senior medical experts from multi-disciplinary backgrounds. This method allows the court to expose any doctors who are considered as working independently and unlawfully. Who is the Bill for? (Extract from Website) As the website states, the Bill is for three specific parties: Medical doctors as it will protect those who want to find new and better ways of caring for their patients and finding better ways to treat patients. The courts current law is ambiguous and leads to uncertainty. The current law does not define clearly what good, or bad, practice is in regards to innovation. It causes doubt among judges and doctors. This Bill brings clarity. Patients - most of us have been touched by ill health, by cancer and rare or hard to treat diseases. And those of us who haven t been, almost certainly will be, one day. It will allow us to go to our medical doctor and say: Have you tried everything? Is there anything new out there? Something that is not standard procedure? I would like you to try it you can, you know, because of the Medical Innovation Bill. Credit: 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. For Expert advice call Attendance Allowance (AA) What is it? Attendance Allowance (AA) is a benefit which can be paid to asbestos disease sufferers and other people over the age of 65 to help with personal care needs. The benefit is paid at two different rates and the amount of benefit payable is dependent upon the person s level of care needs because of their disability. Am I eligible to claim? Before applying for AA you must:- be a resident in Great Britain although there are some exceptions such as members and family members of service men and women in the Armed Forces have resided in the UK, Ireland, Channel Islands or the Isle of Man for at least 2 out of the last 3 years not be subject to immigration control have a physical disability and/or mental disability have a disability which is severe enough to result in you requiring help caring for yourself or someone to supervise you, for your own or someone else s safety After applying for the benefit, you may receive a letter asking you to attend an assessment to check your eligibility. You will be asked to take confirmation of your identity along to your assessment in the form of your birth certificate, driving license, bank statements, and passport or life assurance policies. What will I receive? AA is paid at two different rates. The amount of benefit paid depends upon the level of your care needs. The following rates can be payable to asbestos disease sufferers:- Lower Rate Regular assistance or constant supervision during the day or supervision at night Higher Rate Help or supervision throughout the day and night. This rate is also payable if you are terminally ill. These amounts will be paid directly into your bank or building society account and can be backdated to the date of the claim. There are special rules for the terminally ill who are expected to live no longer than 6 months. In these circumstances, you will need to file the AA form to include a DS1500 form which can be obtained from your Consultant, Specialist or treating GP. How to Claim For further information on how to claim AA online, please visit:- Alternatively, contact the Benefit Enquiry Line on Monday to Friday from 8am to 6pm. Credit:

5 Social Media Who to Follow Facebook Pages Age UK The official Facebook page for Age UK, the country s largest charity dedicated to helping everyone make the most of later life. Together, we can create a world where everyone can love later life. Veterans UK Official Facebook page for the Veterans UK, part of the Defence Business Services (DBS), within the Ministry of Defence, to raise awareness of the services provided to the Armed Forces Community. Age UK is the country s largest charity dedicated to helping everyone make the most of later life. The over-60s is the fastest-growing group in society and there are more of us than ever before. Ageing is not an illness, but it can be challenging. At Age UK we provide services and support at a national and local level to inspire, enable and support older people. We stand up and speak for all those who have reached later life, and also protect the long-term interests of future generations. Our vision A world where everyone can love later life. Our vision is ambitious. It won t be easy to get there, and it won t be a quick journey, but we believe it s how things should be for older people and we work every day to achieve this. Our network The Age UK network comprises around 170 local Age UKs reaching most of England. Our family also includes Age Cymru, Age NI and Age Scotland, as well as Age International, with whom we support vulnerable older people in more than 40 countries worldwide. Full credit: Age UK Twitter Derriford Hospital This is the official account for Derriford Hospital, Plymouth, part It is used mainly by the Communications Team on behalf of staff. Guy s and St Thomas Specialist and acute care at Guy s, St Thomas hospitals & community healthcare across Lambeth and Southwark. We re supported supportgstt. Hampshire Hospitals We run Andover War Memorial, Basingstoke & North Hampshire & Royal Hampshire County Hospitals. Leicester Hospitals We run 3 hospitals in Leicester; the Royal Infirmary, General and Glenfield Hospitals. Almost 12,000 staff treat over 1 million patients every year. 5

6 My Story Mavis Nye In 2009, Mavis was given three months to live but refused to give up her fight with Mesothelioma. She now works within the NHS as a Patient and Trial Rep alongside TSSG Lung Members. By frequently attending many conferences and workshops around the country, Mavis continues to battle speeding up life-saving mesothelioma treatment. I m just an ordinary woman who married at 18 and washed my husband s clothes as he came home from work at the Chatham Dockyard as a Shipwright. I didn t know the powder on Ray s clothes was anything other than dust bought home from work. I shook his clothes and then put them in the washing machine. Forty-eight years later I find I have mesothelioma and a death sentence of 3 months. After my husband s apprenticeship and national service he returned to the dockyard. This is when he worked with asbestos all around as the laggers lagged everywhere in the ships when they were being refitted. My father also worked on the submarines as an electrician. We lived a wonderful healthy life and bought up a family. I went to keep fit classes and walked miles with the dogs in our lovely countryside. Then we retired in 2000, sold our house, moved to the coast, bought a motor-home and settled into retirement. Losing My Breath Forty-eight years later and after a two month stay in Spain I couldn t breathe and the story of mesothelioma began. I had been to the GP as my arm had gone numb and I burnt myself on an iron but didn t feel it. He thought I had a trapped ulnar nerve and made an appointment for me to have an X-ray and see a specialist. In May I went to vote and I just couldn t breathe. When I got home, to my amazement the GP phoned and told me the results of the X-ray were showing a mass and they had arranged a bed at the hospital for me to have my lung drained. This was carried out and from the fluid they found cancer cells and believed I had mesothelioma. Prognosis and Chemotherapy That led to me being given 3 months to live. I didn t accept that and after my pleurodesis at the Guy s Hospital in London, I started chemo. Cisplatin and Alimta which is the standard treatment in the UK. This worked for fifteen months and then the cancer started growing again. I was offered the NGR-hTNF trial at Maidstone, this clinical trial acts on the tumour s blood vessels which I m afraid didn t work for me or I had a placebo. So two sessions of Cisplatin and Alimta, I became allergic but it did work and we had stability again for a while...then growth was found in my next scan. The Life Line What would I like next as there are no new trials or Chemo? I m not used to a doctor having no answers. I ed Saint Bartholomews Hospital and that Friday I was in an appointment where Peter offered me the last place on the ADAM Trial, but it would mean another Bi-op and then I might not even be suitable. He threw me a life line of GemCarbo chemotherapy and I could have that locally. Back to Canterbury and I was on chemo again until September. Bad News... The October scan was bad news...the chemo hadn t worked. A scan every three months was showing the growth of three millimetres every three months. I wasn t happy. So I got right behind the Saatchi Bill (The Medical Innovations Bill) and worked with Lord Saatchi and the doctors. I was also on the committee when it was launched at the House of Commons. Then a Doctor gave me the advice to go to the Royal Marsden where they were starting a trial that might suit me, so I asked my Oncologist and she referred me. The Meso Warriors Community I m now on a Phase 1 trial of Immunotherapy. It isn t just for mesothelioma but the trial, MK-3475, is a drug being tested as it blocks the interaction of a substance called PDL-1 with PD Inhibitor. When I was first diagnosed with mesothelioma in 2009, I Googled the word as I d never heard of the disease, only asbestosis. All the depressing reports and write-ups gave me a shock as there seemed no hope. I turned to Facebook and completed a search which gave me so many Lawyer sites; however I did come across Debbie Brewer s Facebook which led me to a wonderful community of patients around the world called The Meso Warriors. Debbie and I became friends and together we created more groups. I started the Q&A page so I could ask all the questions I needed and there are groups for other needs such as: Mesothelioma Articles Groups with new trials and news so we can always be ahead and up todate and also blogs where warriors can tell their day-to-day stories of their fight

7 Meso Warriors and Carers groups to help carers understand the diseases as well as get help when needing to cope. Individual Groups that are secret where each member can put their personal thoughts and stories and share with their own friends and family. We even have a Tears Page for the partners that have lost a loved one so they share their lives afterwards. It s amazing how that helps in so many ways. Post-mortems and wills and the day to day help to live again. This has all become so successful that the world has joined in and we have members from America, Australia, and many other countries, we learn from each other, how the world copes with the disease. Also we fight for the ban of asbestos and how to manage it in the buildings. Take Five Stay Alive Campaign is run by British Lung Foundation which I made a video for and became the centrefold in their annual report. My Wish Suffering from mesothelioma, I wish we could take asbestos out of our lives or the closest to zero that could be humanly achieved. There is no statistical data as to the amount of fibres breathed in over time that can be medically proven to have caused mesothelioma. I had my exposure from washing my husband s work clothing, and many people have suffered and are going to suffer from asbestos as a result of unintended exposure. Since the use and importation has been prohibited in Europe, the exposure people are now suffering and still continue to be exposed to asbestos in our built environment. For the sake of our future generations, asbestos must be removed from the world we live and work in. To do that, I believe it requires professional companies operating at the highest standards to continue to remove this category 1 carcinogen safely and make our world a safer place. I fought against it by having chemo and now my last chance is MK3475, an immunotherapy treatment which is shrinking my disease very fast. For how long no-one knows at this point. I fight on for the future and all our Meso Warriors past, present and future. Find out more Website: Donate: medium=socsponmobile&utm_ content=mavis- Read her story online: rayandmave.weebly.com/ Facebook Group: One Stop Mesothelioma 7

8 Testicular Mesothelioma Fighting Against a Rare Condition Some may be unaware that asbestos related mesothelioma not only affects the pleural lining of the lung and the abdominal lining, but can also affect the thin membrane covering the testicles. What is testicular mesothelioma? Testicular mesothelioma is also known as mesothelioma of the tunica vaginalis testis and is extremely rare, with less than 250 people being diagnosed with the condition thus far. Unfortunately, the condition has caused great confusion within the medical profession due to its rarity. Despite this, sufferers of this type of mesothelioma usually benefit from a long prognosis when compared to other forms of the asbestos related disease. Recent studies have revealed the average life expectancy for testicular mesothelioma to range from 20 to 23 months, which can be compared to an average prognosis of 12 to 18 months for respiratory mesothelioma. Symptoms The most common symptom affecting those diagnosed with testicular mesothelioma is a build up of fluid in the scrotum, which is known as a hydrocele and the condition often presents itself as a secondary form of cancer to peritoneal mesothelioma which affects the membrane of the abdominal cavity. Is there a cure? Sadly, there is no known cure for testicular mesothelioma, although those suffering with the condition can undergo treatment in the form of surgery to remove a portion of the testicle or even the full testicle, depending on the severity of the cancer. Surgery can also take the form of aspiration, hydrocelectomy, inguinal orchiectomy, hemiscrotectomy and lymphadenectomy. Such procedures will then be followed by a course of radiotherapy and chemotherapy in an attempt to obliterate the cancer. Testicular mesothelioma sufferers face the probability of their cancer returning, even following successful surgery, as this type of the condition is known as being a particularly aggressive form of cancer which regularly reoccurs and spreads easily to other parts of the body. How does it develop in the body? As the condition is so rare, very little is known about how the condition develops in sufferers although experts have reported on various points of origin for testicular mesothelioma. It is known that the thin membrane covering the testicle known as the tunica vaginalis, contains mesothelial cells, which are present in most of the body s membranous linings, including the pleural which protects the lungs. Solid white-yellow nodules can be found on the sensoral surface of the tunica which can eventually encase the contents of the scrotum, causing the tunica to thicken. Why would asbestos affect the testicles? No known theory has developed to explain why asbestos exposure might cause a cancer to develop in the testicles

9 The best experts can say is that it is known that asbestos fibres in the body can become lodged in organs, resulting in infection and inflammation which could eventually develop into mesothelioma. Asbestos fibres are known to cause cells to divide in an abnormal way, resulting in fluid build up and the development of tumours. This is evident in cases involving respiratory mesothelioma where sufferers develop a build up of fluid at the base of the lung known as a pleural effusion. The same build up of fluid is found to affect the scrotum in cases of testicular mesothelioma. According to Report of a case with comprehensive review of literature, Bisceglia M et al, Department of Pathology, IRCCS Casa Sollievo della Sofferenza Hospital, San Giovanni Rotondo Italy, 2010, the sole plausible causative factor so far ascertained in the pathogenesis of these tumours is asbestos, which was only found to be prevalent in 30% to 40% of cases. Can I claim for testicular mesothelioma? Claims for testicular mesothelioma compensation have succeeded in the UK. One of which involved a claim against BBA Aviation (British Belting & Asbestos) which is a common past polluting company which Asbestos Justice has successful sued in previous claims for asbestos disease compensation. In the relevant case, Mr. M. was diagnosed with testicular mesothelioma after suffering exposure to asbestos at BBA s asbestos factory in Checkheaton, West Yorkshire during the 1960 s. helicopters, asbestos brake show production as well as the general threading of the bobbins of asbestos fibre. As Mr. M s exposure to asbestos occurred in the 1960 s, the Factories Act of 1961 applied to the Defendant s factory and liability was established. On the issue of causation, medical evidence was provided by the eminent medical expert, Dr Robin Rudd who emphasised the unpredictable and aggressive nature of asbestos related testicular mesothelioma in his evidence. The claim against BBA succeeded with the Claimant recovering 125, in damages for his diagnosed asbestos related condition. This was the second of two claims for testicular cancer which have been successfully brought against BBA. If you or a family member are suffering from an asbestos disease, contact Asbestos Justice on for expert legal advice. Image Credits: BBA Aviation (logo) - The BBA Aviation website. Licensed under Fair use of copyrighted material in the context of BBA Aviation via Wikipedia Male Testes CE Essentials.net Mr. M. suffered regular exposure to high levels of asbestos dust when working on various processes throughout the factory which included, operating machinery which made belts for 9

10 Armley - The UK s Deadliest District (Part 5) Hancock & Margereson v J. W. Roberts (Turner & Newell) 1996 There are two substantially famous cases involving two victims of the Armley Asbestos Tragedy. June Hancock, born in 1936, was a little girl when she was first exposed to the deadly dust. She had lived only a mere 250 yards away from the J. W. Roberts factory. Her mother, who too passed away from mesothelioma in 1982, used to run a small corner shop at the bottom of the road. June s memory of the dust was like any other child in Armley: The children would throw asbestos snowballs at one another and played hopscotch on pavements covered in the blue asbestos dust [18] Unfortunately June s exposure didn t end there. Along with her classmates at Armley Park School, lunch times were filled with care-free fun playing with the dust that flew over from the shadowing factory sitting 275 yards away. June was diagnosed as suffering from mesothelioma in After years of battling for justice, June lost her heroic battle to mesothelioma on July 19th 1997, she was only 58. June touched the lives of so many around her, it was after her passing that the June Hancock Foundation was founded. As the awareness of mesothelioma grew, so did the need for a cure. Since 1997, all of the June Hancock s Foundation s supporters have raised over 1,100,000 for mesothelioma research. It too funded carers and patients support. Arthur Margereson, born 1925, was also a victim of J. W. Roberts neglect. Like June, Arthur had also lived only 200 yards away from the factory and neither did he work for the factory. He had lived in the same terraced house for over 30 years. Like June, Arthur also played outside the Leeds factory on the sacks full of asbestos left outside overnight by J. W. Roberts. In 1990 Arthur was diagnosed with mesothelioma, one year later, he passed away [19]. Both June and Arthur lived in small homes, this confinement led them to play outside more like most children in Armley. Equally each of the cases showed that neither June nor Arthur had worked for J. W. Roberts nor did they have history of working with asbestos in other occupations. It was agreed that they were suffering from mesothelioma as a result of the factory s dust polluting the area. uks-deadliest-town

11 Treatment Centres If you have been diagnosed with an asbestos disease, finding the right help can be difficult. We advise speaking to your own medical team when considering the most appropriate treatment options. There are many specialist hospitals and treatment centres providing specialist services. To help begin your search, we have compiled a list of treatment and trial centres for asbestos diseases. 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: 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: 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: 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 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: 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 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: 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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