Newsletter. Mesothelioma UK. Ghislaine Boyd. Ghislaine Boyd. Welcome to the Autumn edition of our newsletter

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1 Mesothelioma UK Newsletter Autumn Issue 2014 About me! Ghislaine Boyd Business Development Manager I joined the team in July 2014 in the newly created post of Business Development Manager for Mesothelioma UK. Welcome to the Autumn edition of our newsletter Firstly I would like to introduce myself. I am Ghislaine Boyd and have recently joined the Team at Mesothelioma UK as Business Development Manager. Late in 2013 it was announced that Mesothelioma UK was hoping to appoint to this post early in Well it finally came to fruition in July I have over 30 years experience working in radiotherapy. I joined University Hospitals of Leicester (UHL) in 1979 as a newly qualified therapy radiographer taking on the post of Head of Radiotherapy Services in June 2001, overseeing and managing many changes and major developments within the Radiotherapy Department. I also managed the Macmillan Cancer Information and Support Centre and undertook the role as Project Lead for the successful expansion of the centre in June My experience within Cancer Services, both clinical and managerial, has provided me with a sound understanding of the needs of cancer patients and their carers. The skills and knowledge that I have acquired will prove invaluable in taking up this new role at Mesothelioma UK. My approach to developing services is always patient focused, at the same time as valuing the staff and managing available resources effectively. I am really looking forward to taking on the new challenges this post may bring and to working with the dedicated team at Mesothelioma UK. Ghislaine Boyd In the article adjacent to this you can find out a little more about me and my background. I hope that the information I have provided will give you an insight into my passion for working within the cancer environment and the skills and knowledge I bring to supporting Mesothelioma UK. So, having been in post for four weeks, I have been given the honour of producing the front page for the newsletter! On behalf of the Mesothelioma UK & Trustees I would like to welcome two new additions to the mesothelioma CNS team, Sarah Smith based in Bristol and Lorraine Creech based in Manchester. We all wish them well in their new roles where they will both be instrumental in providing invaluable support to mesothelioma sufferers and their carers in their respective areas. As always we have included news and information which we hope will support and inspire anyone involved in the mesothelioma community. The Leicester Mesothelioma Action Day took place at the Leicester Cathedral, the weather being very kind and affording us a beautiful sunny and warm afternoon. In this edition you will be able to read all the news on our successful Mesothelioma Action Day We hope, by now, that many of our supporters would have signed up to the Pledge to Beat Mesothelioma; if you still wish to do so you can access the link on the home page of our website. We are currently busy finalising the details of our Mesothelioma Management in the UK 2014 meeting and look forward to welcoming the healthcare professions attending what should prove to be a very full, interesting and informative day. The meeting will take place in London on Friday 12th September. As we move into October we will be holding our 9th annual Patient and Carer conference in Leicester. The date for your diary is Saturday 4th October. This is a great opportunity to meet users of our service, share experiences and meet the Mesothelioma UK team face to face. The feedback and information gathered at these events is invaluable and helps us shape how we best provide information and support to the people who matter most, the patients and their carers. If you wish to attend, and have not yet registered, you can access the registration form on our website www. mesothelioma.uk.com or call us on the helpline number and the team will be more than happy to post the details to you. Latest news - there has been a recent announcement with regard to mesothelioma claims: Justice Committee Says...A summary has been provided by the Asbestos Victims Support Groups Forum UK can be found on page 5 of the newsletter. We will, of course keep you updated on the above issues; in the mean time you can access more information on this important announcement via our website. Please continue to feedback to us on our provision of services, website and newsletter so we can continue to provide you with the information and news which are important to yourselves Ghislaine Boyd Mesothelioma UK Business Development Manager If you would like to be removed from (or added to) the mailing list for the newsletter, please call freephone , or write to: Mesothelioma UK, Glenfield Hospital, Groby Road, Leicester, LE3 9QP. Please state whether you would like electronic copy (please supply address) or hard copy.

2 An Introduction to Ellie s Friends We set up The Eleanor Rose Foundation a couple of years ago in memory of my fiancée Ellie Jeffery, a broadcast journalist who died of breast cancer aged 29. The support we aim to provide is based on Ellie s experiences and feelings about life with cancer; that people should have the chance to enjoy life, not just survive it. We know from Ellie s own experiences, which she described in her blog Written Off (www.writtenoff. net), that there are many people with a lot of goodwill and an abundance of things to offer who want to help people with cancer. While this help may be financial, it is often more rewarding for people to help directly; this could be as part of their job, by providing a product from their business, or simply by doing chores for someone who is going through treatment. We have carried out research amongst people affected by cancer and found this to be one of the key areas where a current gap exists in cancer support services; in support which will enable people to enjoy some of the ordinary, everyday pleasures that are made more difficult by cancer as well as the practical help that is needed when treatment makes everyday life difficult. Our online initiative Ellie s Friends will enable people affected by cancer to find services specifically available to them that may benefit their wellbeing. We are developing a website which will also display services, products and skills that independent service providers (both businesses and individuals) are gifting at a free or reduced rate to try and help make life that bit more enjoyable. With so many excellent UKbased charities, organisations and volunteer groups providing various help and support to people with cancer, we have also identified a need for one online hub where this information can be centrally displayed and accessed. This will ensure that people are well-informed of beneficial services and support that is available to them through these organisations, not missing out on anything because they re not aware of it and enabling them to make full use of what s available. Cancer is costly in more ways than one. A Macmillan study into the financial impact of cancer found that people living with cancer on average pay 570 a month due directly to cancer-related issues (travel to hospital, parking, additional heating bills, extra medication, etc), and this doesn t even take into account the almost one in three people whose loss of income amounts to 860 a month on average. A reduced income means having to adjust your budget, and of course the first things to cut back on are the little treats that make life worthwhile. We currently offer a variety of things via our Facebook page, but we hope to launch the Ellie s Friends website soon and through that, as Ellie wrote in her blog, Make The Big C Smaller. Written by Tom Thostrup on behalf of the Eleanor Rose Foundation. Introducing Nurse 5 Sarah Smith My name is Sarah and I am delighted that we were lucky enough to secure funding from Meso UK to support a two day a week post at North Bristol Trust. I set up the lung cancer service at North Bristol 14 years ago and it is unrecognisable from when I started. I trained in Southampton and then went to work at The Royal Marsden and from there I worked for another cancer charity Cancerbacup and it was whilst working there that I became focused and championed the importance of providing patients with as much information as they wanted so that they could make informed decisions about their treatment options and more importantly their future. Information is powerful and gives patients more control in an otherwise difficult situation. Working at North Bristol with Nick Maskell means that we are very committed to supporting clinical trials and run a number of trials from this hospital. We have also developed some Know more, Do more information days for mesothelioma patients where we discuss issues such as enhancing your diet, being as physically 3 active as possible, dealing with the legal system and also facing an uncertain future and what this means to you and your family. In Bristol we have an amazing support group called Bristol and Beyond asbestos family support and we regularly have 60 people join us for a variety of events, raising awareness through national Mesothelioma day with a dove release, an annual patient conference and then a number of social events. It is a privilege to be part of this group. Pleural Effusions by Rebecca Myatt Pleural Effusion is very common in patients with mesothelioma. It occurs when there is a build up of fluid between the thin lining surrounding the lung (visceral pleura) and the thin lining on the inside of the ribs (parietal pleura). In health, there is normally a small amount of fluid in this area which prevents friction between the lungs and the chest wall during breathing. Symptoms often include breathlessness, cough, and sometimes pain which increases on breathing in or coughing (pleuritic pain). Some patients describe a feeling of heaviness in their chest. Small pleural effusions may not give any symptoms and may only be noticed on a chest X-ray. Diagnosis is based on findings during examination of the chest and an X-ray. Following confirmation of a pleural effusion, the fluid is drained to relieve any symptoms. This can be done under ultrasound guidance with a local anaesthetic in the outpatient department or as a day case. Large pleural effusions are drained gradually to prevent complications associated with the procedure such as pain, cough or dizziness. Unfortunately, pleural effusions can reoccur so the patient will be managed by observation, further drainage (sometimes called aspiration) or inserting a substance such as sterile talc into the pleural space to cause the two linings on the outside of the lung and inside of the ribs to stick together. This can be done by a chest doctor with sedation or by a thoracic surgeon under a general anaesthetic if the patient is fit enough. For those able to undergo general anaesthesia, video assisted thoracoscopy (VAT s) is recommended. This allows the surgeon to visually examine the inside of the chest cavity, take tissue samples (biopsies), and insert talc over the whole surface of the lung. Unfortunately, this type of surgery is generally only performed in specialist cardiothoracic centres which may mean travelling long distances and several days hospital admission which may be difficult. Patients with mesothelioma often have large effusions which require frequent admission and repeated drainage. For these, the insertion of an indwelling pleural catheter such as the PleurX tunnelled catheter (Carefusion) is a useful alternative. This can be inserted as a medical or surgical procedure. It consists of a thin catheter, with a one way air-tight valve in the hub which is tunnelled beneath the skin and into the space where the fluid builds up. It can be left in place indefinitely or removed if the problem resolves. Drainage into a vacuum drainage bottle, is carried out by a nurse in either the ward or community on a regular basis. With training and supervised practice, patients or relatives can also learn how to operate the system. The amount of times this is drained depends on the amount of fluid which builds up. Prior to discharge the patient is taught how to connect the bottle to the catheter and given an information pack supplied by the company containing a record book, educational support material and relevant phone numbers. The catheter can have the effect of stimulating an inflammatory response on the pleura and the vacuum drainage bottles encourage the lung to re-expand, for some people this means that the fluid no longer builds up. This is very beneficial as it means a shorter hospital stay and a reduction in the amount of further interventions. Pleural effusions can be an uncomfortable and frightening symptom of mesothelioma however once they are diagnosed, treatment can be relatively straightforward allowing the patient to continue life as before. Debbie s Newsletter Snippets What s happening with Mesothelioma UK this Autumn? This October we are holding our Patient and Carer Day Saturday 4th October 2014 at the Mercure Hotel in Leicester starting at 9.30am. Don t forget to contact me to register your place. We now have three new patient information leaflets namely:- Peritoneal Mesothelioma Petal Guide to Recovery Coughing Our Christmas cards will soon be available. We have five new designs to add to our collection an order form and all details will be available on our website shortly or give me a call. To Run Mesothelioma UK for 1 year 426,000 is required. You can Sponsor A Day in Memory or Support of a loved one. Contact us for more details. The 9th Patient & Carer Day is taking place on Saturday 4th October Don t forget to book your place, ring us now on Don t forget to read about our new Mesothelioma Specialist Nurse Sarah Smith from Bristol - I m Nurse 5 Should you require any information with regard to any of the above events/information please contact Debbie Neale on or me directly at 2 Mesothelioma Newsletter - Autumn Issue 2014 Mesothelioma Newsletter - Autumn Issue

3 Bristol & Beyond Asbestos Family Support (BBAFS) held their 4th Annual Patient Conference. The day was once again well-attended by more than 70 people with only a few being put off by the foggy weather. Members had generously donated lots of raffle prizes and the group raised nearly for the running costs of the group, as well as raising money for Mesothelioma UK through donations and selling badges. Throughout the day, patients and their families were entertained and informed by a variety of speakers, who discussed research programmes, legal updates, treatment and future national events. More importantly though, the event provided an opportunity for those suffering from mesothelioma and their families to get together to share experiences and support each other. Here are some of the interesting things we learned during the day: Sarah Smith, Lung Cancer Nurse Specialist, North Bristol NHS Trust: James Lind Alliance - Priority Setting Partnerships Sarah Smith started the day off with an introduction to a new survey launched in February by the James Lind Alliance. The purpose of the survey is to improve the overall experience for patients and their families who are faced with a diagnosis of mesothelioma. Those behind the survey are hoping to identify the top 10 areas that need to be focussed on and where clinical research is needed. Sarah led an interactive discussion and encouraged our members to share their individual experiences in order to submit a collective response on behalf of our group. The main area of discussion was centred around the way in which the diagnosis is delivered to patients. It was agreed that there is a great need for training and consistency in how this news is given. It was also clear from our discussion that many carers find themselves feeling isolated and not knowing who to turn to during times when their loved ones are in pain and are in need of support. The group felt that it would be useful to have a list of out-of-hours contacts (GP, hospice, etc) so that medical and emotional support can be provided when it is needed most! The results of the nationwide survey will be published later this year and the group hopes that improvements will be made to the diagnosis, treatment and care of mesothelioma sufferers. Alan Baker, Honorary Secretary, BBAFS: Mesothelioma UK: Action Mesothelioma Day Planning Meeting Alan Baker provided some feedback to the group about Mesothelioma UK s plans for Action Mesothelioma Day due to take place on 4th July Alan attended the meeting in February 2014 where it was announced that new mesothelioma specialist nurses will be funded in Bristol, Oxford and Sheffield. This is great news for these areas, but Alan stressed the point that funds needed to be raised to pay for these nurses and to recruit more nurses in other areas. The purpose of the Action Mesothelioma Day is to help raise money for the charity but more importantly to raise the profile and awareness of asbestos related illnesses that affect hundreds of people each year. Alan welcomed any ideas from the group as to how BBAFS could mark this special event and to remember lost family members. The group are really looking forward to Action Mesothelioma Day and further information about how BBAFS will mark the day will be available on the group s website co.uk in the coming months. Ginny Chalmers, Head of Industrial Disease, Lyons Davidson: The Diffuse Mesothelioma Payment Scheme Ginny Chalmers was invited by the group to speak about the new Mesothelioma Payment Scheme. This scheme has been introduced by the Mesothelioma Act 2014 which received Royal Assent earlier this year. Ginny provided the group with details of what is quickly becoming known as the scheme of last resort, including when an application to the scheme may be necessary. Unfortunately there are times when a civil claim is unsuccessful and those suffering from mesothelioma are unable to receive compensation from their negligent employer. The scheme offers great news for those who would not normally be able to pursue a civil claim; however, Ginny told our group that it does not go far enough to compensate sufferers fully. Compensation is based on the age of the patient and represents approximately 80% of the average compensation received in a civil claim. The clear message was that although applications can be made to the scheme by the sufferers or their dependants, it is important to instruct an Asbestos Specialist Solicitor, who has the resources to fully investigate the possibility of pursuing a civil claim. Mr Gianluca Casali, Consultant Thoracic Surgeon, University Hospitals Bristol NHS Trust: Why not Surgery for Mesothelioma? The most thought-provoking talk was delivered by Mr Gianluca Casali, who discussed the benefits and risks surrounding surgical intervention for the treatment of mesothelioma. After a brief lesson in the anatomy of the chest, Mr Casali explained the different types of surgery that are available for mesothelioma patients; however, available does not necessarily mean that surgery is offered. When assessing whether surgery is worthwhile, the surgeon will consider the benefits, including quality of life, pain relief andincreased life expectancy, as well as the risks, which is linked to the aggressiveness of the treatment. There are certain procedures that the majority of patients will undergo, such as pleural biopsies (either scan guided or thorascopic) to aid medical practitioners with diagnosing the disease. Some patients will have a talc pleurodesis to encourage an inflammatory reaction which triggers your body s defences and reduces the build up of fluid on the lungs. These are the less intrusive procedures where the benefits tend to outweigh the risks and actually assist in the diagnosis or improve the patient s quality of life. More radical surgeries include parietal pleurectomies and decortications, whereby thick layers of tissue that are stopping the chest wall from moving and expanding are removed. Mr Casali told the group that there is nothing more satisfying for a surgeon than seeing a lung expand after a decortication. However, although these surgeries can improve the patient s quality of life, they are extremely invasive procedures that do not cure the patient. Mr Casali provided a brief summary of a recent trial called MARS I. This involved performing extrapleural pneumonectomies which involve removing the lung. This is extremely aggressive and radical. Statistics show that the prognosis is still only months, similar to that for the disease itself. There is also a degree of pain and breathing difficulties following the surgery for the remainder of life. The study showed that after 12 months, nearly 50% of those who had undergone the extrapleural pneumonectomy had died, whereas only 30% of those who had not had the surgery had died. So can it be said that having your lung removed is worth it? There is now going to be a further trial, MARS II, which will look at what happens to those who have pleurectomies and decortications as opposed to those who do not undergo this surgery. The group hope to invite Mr Casali back in the future for an update on this trial and developments in surgery. Sarah Smith, Lung Cancer Nurse Specialist, North Bristol NHS Trust: Actively Living with Mesothelioma The day ended, as it had started, with Sarah Smith providing the support group with practical tips for living actively with mesothelioma. Sarah explained that travel insurance providers for mesothelioma patients are always changing so it is good to shop around for insurance. She also gave the following advice to patients: Proper planning is essential to ensure that difficulties are avoided. Make things easy for yourself - use a wheelchair in the airport to avoid adverse symptoms. Choose your destination wisely - consider countries where you can use your EHIC card or other 10 countries who have similar arrangements. Get a Fitness to Travel lette from your treating doctor. Take your medication with you and check that there are no restrictions on medications where you are travelling to and if there are then take a letter to explain your medication. Take precautions in the sun, especially if you have had treatment for your illness. For more information about the support group, upcoming events or the Patient Conference, please visit or contact Rachael Wilson on or by Leicester Action Mesothelioma Day Service of Reflection and Hope Again the Leicester Action Mesothelioma Day Service of Reflection and Hope was very well attended with over a hundred people turning out to support this special day. Even though the main entrance and cathedral gardens were closed due to construction work the Cathedral as always was a place for quiet reflection. On behalf of the Cathedral Barry Naylor, Urban Canon kindly welcomed all to the service which this year focuses on research. The Reverend Mark Burleigh from the University of Leicester Hospitals kindly took the role of Master of Ceremonies and welcomed the Deputy Lieutenant of Leicestershire, Dr Wendy Hickling, Lord Mayor of Leicester, Councillor John Thomas and consort Mrs Margaret Corley and Chairman of Leicestershire County Council, Mr Bill Boulter & Mrs Boulter and all other guests. The guests were then invited to place their message doves on the tree of reflection and Dr Wendy Hickling then opened with some thoughts about those that are living with mesothelioma and why it is so important for research to take place. Dr Mick Peake then spoke about optimising care for every mesothelioma patient and Professor Dean Fennell spoke of the trials and research that are taking place around the UK. Mr Alastair Ault spoke very movingly of his experience since being diagnosed with mesothelioma and about the trials and tribulations his journey has taken him. Alastair left us all feeling very hopeful and positive for the future. A classical interlude of reflective music was kindly played by Classical Guitarist Ms Yvonne Bloor. Jill Lemon from Mesothelioma UK Charitable Trust gave news that by early 2015 there will be 11 Mesothelioma Nurse Specialists in the UK, which a couple of years ago seemed impossible and their ultimate aim is to fund a total of 18 specialist nurses in England, Scotland, Wales and Northern Ireland. She reminded everyone to sign the Mesothelioma Pledge. The Mesothelioma Pledge calls on the Government to facilitate the establishment of a long-term sustainable Mesothelioma research scheme funded by the insurance industry.joanne Gordon from DAST then followed by endorsing the need for continuous funding for further research into Mesothelioma and ended with two poems. The Right Honorable, Lord Mayor, Councillor John Thomas spoke of his thoughts about the dangers of asbestos exposure and the need for research. The Reverend Mark Burleigh then closed the reflection and led us outside in the warm sunshine where Dr Wendy Hickling, the Lord Mayor and Alastair Ault released the white doves as a symbol of hope for the future. Everyone was invited back into the cathedral for a traditional strawberry tea which was kindly funded by DAST. Mesothelioma UK Charitable Trust would like to thank the Leicester Cathedral for hosting and supporting Action Mesothelioma Day again and to the ladies and gentlemen who kindly served and provided the tea and cake and all those who attended in support of Action Mesothelioma Day. Jill Lemon Fundraising & Marketing Manager Justice Committee Says Government Must Consult Again On Mesothelioma Claims Following Maladroit Review. In a report published the Justice Select Committee heavily criticises Government plans to reform mesothelioma legal claims. The proposed measures would have imposed legal costs on mesothelioma sufferers seeking justice through the courts. Asbestos Support Groups have welcomed the report and backed it s call for the Government to halt the changes until a proper review has been conducted. These measures were originally part of the Legal Aid Sentencing and Punishment of Offenders Act 2012 (LASPO). Sections 44 and 46 of the Act impose legal costs on people taking personal injury cases. Parliament was concerned about the adverse effects this could have on mesothelioma sufferers making claims and decided to exempt them until a review had taken place. The Government did this in 2013 but the Committee described their review as maladroit and unsatisfactory and called on the Government to start again. The Committee says the Government rushed through the review prematurely because it was not reconciled to the concession it was forced to make in Parliament during the passage of the LASPO legislation to exempt mesothelioma sufferers from its provisions... The Justice Committee criticises the Government for not providing a cost benefit analysis to claimants during the consultation and for shoe-horning the s48 review into a wider consultation which was a maladroit way of proceeding. The Committee criticises Government for concluding a one-sided head of agreement with the association of British Insurers (ABI) which they kept from claimants and appeared to have had no intention of supplying us with this document as part of our enquiry. Doug Jewell, Forum vice-chair, who gave evidence to the Justice Select Committee, says: We welcome the Justice Committee report which calls for a proper review as required by S48 LASPO. We said all along that the Government review is a sham and is not the review that Parliament, or claimants, expected. The Government must now respect the wishes of Parliament and satisfy the expectations of mesothelioma sufferers and their families that a fair review will be conducted. The Justice Committee report is published a day after the conclusion of The Forum Judicial Review of the Government s decision to end the mesothelioma exemption. Doug Jewell commenting on the judicial review says: The Justice Committee report vindicates our decision to judicially review the Government s flawed consultation which purported to be the S48 review. Judgment has been reserved and we hope that the court will recognise the unfairness of the consultation process which stood in for the S48 review. (For further information contact Tony Whitston or Doug Jewell ). 4 Mesothelioma Newsletter - Autumn Issue 2014 Mesothelioma Newsletter - Autumn Issue

4 Newsletter for Mesothelioma Support Group at Guy s & St Thomas Hospital, London The idea for a newsletter originally was to raise the profile of the mesothelioma support group at Guy s and St Thomas NHS Trust, particularly for patients who attended the hospital for treatment of their mesothelioma. A husband of one of the mesothelioma patients who has regularly attended the support group for several years expressed an interest in helping with the production of the newsletter. He told me that if and when his wife died he would still like to be part of the support group and felt that helping with the newsletter would be a good way of still being involved. With this in mind it felt appropriate for him to be given the role of editor for the newsletter. In this role he has designed the layout of the newsletter and has a say in which articles are included, he also writes an introduction for each newsletter. A number of meetings were held initially with the Mesothelioma CNS at Guy s and the editor to discuss what the newsletter should look like and who it should be aimed at. It was agreed that the newsletter should be a resource for people who did not necessarily want to join the support group and also a way of encouraging new patients to attend the support group as they could gain an insight into the activities and ethos of the group. The Mesothelioma CNS felt it was important that all patients with a mesothelioma diagnosis at Guy s and St Thomas NHS Trust should have access to good support and information and it was hoped that the newsletter would fit this criteria. The newsletter has been officially sponsored by three specialist law firms who assist patients with mesothelioma. The sponsorship covers the basic cost of printing the newsletter. The newsletter is also available as an electronic version on the solicitor s websites. The newsletter is produced on a quarterly basis and is sent out to all existing patients and put in the patient pack for all new patients. In each issue of the newsletter we have an expert interview, so far this has included an eminent cardiothoracic surgeon explaining the role of surgery for mesothelioma patients and which patients would be suitable for surgery. He also gave an outline of his role and how patients could be referred for further advice. We have also had interviews with a specialist lung physiotherapist and occupational therapist on how to live well with mseothelioma and in the latest edition we had a research nurse talk about the latest trials on offer at Guy s and St Thomas NHS Trust for mesothelioma. The latest newsletter will also look at providing a guide to research jargon and what it all means. So far we have received very positive feedback from our patients about the newsletter and the number of patients attending the monthly support group has grown. We are currently in the process of talking with other hospitals in London, Kent and Essex to share our newsletter with patients who have no access to a specialist Mesothelioma CNS or support group. It has also been agreed that patients from other hospitals can come and attend the support group at Guy s and St Thomas NHS Trust. ARTICLE WRITTEN BY RACHEL THOMAS, LUNG CANCER CLINICAL NURSE SPECIALIST, PALLIATIVE CARE DEPT, GUYS HOPSITAL, LONDON The Charity welcomes new Corporate Sponsors anytime during the year so if your company is interested in becoming a Corporate Sponsor please contact Jill Lemon on for more details. London Hazards Centre Action Mesothelioma Day Event 4 July 2014 marked Action Mesothelioma Day Events were held up and down the country to raise awareness of mesothelioma, a devastating form of cancer caused by asbestos exposure. Leigh Day hosted an event organised by London Hazards Centre. The event was marked by a symbolic release of white doves in remembrance of those who have developed mesothelioma. The meeting co-ordinated by Paul Street of London Hazards Centre hosted a range of speakers on subjects related to mesothelioma including a talk from Phil Lewis of Unison / London Hazards Centre, Dan Shears, GMB Health and Safety Organizer, Tony O Brien from The Construction Safety Campaign. Rachel Thomas, a Specialist lung cancer nurse from Guy s Hospital spoke about the work of the Guy s & St Thomas Mesothelioma Support Group and Vince Hagedorn spoke about the campaigning work of the Asbestos in Schools group. Leigh Day partner, Daniel Easton and Phil Lewis introduced the film Janice which tells the story of Janice Allen, a mesothelioma sufferer, who was represented by partner, Harminder Bains, in a claim against Marks & Spencer concerning her exposure to asbestos whilst working on the shop floor in the late 70s/early 80s. Harminder said so far two phases of people have been mainly affected by mesothelioma. The first phase was those, like her own father, who worked directly with asbestos in industry. The second phase concerned those such as electricians who, by undertaking their daily work, were exposed to asbestos. The third phase concerns those like Janice who simply work in buildings which have been constructed from asbestos. Leigh Day represents victims of mesothelioma who have been exposed in public buildings such as banks, offices and hospitals. Leigh Day is happy to support London Hazards and their commitment to keeping us all safe in our place of work. We fully endorse their wish to set up a London Asbestos group and Harminder Bains is to be Chair of the group once it is established later this year. London Action Mesothelioma Day 2014 Hailed as a success by everyone involved, the London Action Mesothelioma Day event at Leigh Day Solicitors in Farringdon, had a top-flight platform of speakers, addressing key issues like increased funding for research into a cure for Mesothelioma, and opposition to government plans to replace Construction (Design and Management) Regulations Jointly organised by the London Hazards Centre and East London Mesothelioma Support (ELMS), the event is held annually in memory of those who have died from Mesothelioma and other asbestos related diseases. The chair of the event set the scene by reading out some of the terrible statistics connected with Mesothelioma. Around 2,500 people a year are diagnosed with the disease and it can take anything from years to develop. Exposure to asbestos is always the cause there is no cure. Students and staff are at risk because asbestos is present in over 75% of UK schools and colleges. The British Lung Foundation estimates that around 60,000 people will die from Mesothelioma in the next 30 years. The speakers: Dan Shears from GMB National Health & Safety Office Tony O Brien from the Construction Safety Campaign Rachel Thomas from the Guy s and St Thomas lung cancer team Dan Easton from Leigh day Solicitors together with Phil Lewis of Unison Vince Hagedorn from the Asbestos in Schools Group After a questions and discussion session the meeting expressed support for the following action: Signing the e-petition calling for the government to increase Mesothelioma Research Funding at petitions/59014 or go to the e-petition website and key in Mesothelioma in the search box. Supporting the call for an international ban on the use of asbestos and banning the import and export of it Endorsing the TUC 10-point Manifesto of measures for implementation by a future government Setting-up a new London Asbestos Support Group Endorsing the Action Mesothelioma Charter Opposing government plans to replace Construction (Design and Management) Regulations For existing health and safety standards to be strictly enforced and increased workplace inspections The event closed with the release of a flock of white doves to remember all those who have died from asbestos diseases. This was the ninth annual Action Mesothelioma Day and similar events were being held in Manchester, Liverpool, Dundee, Sheffield, Birmingham, Southsea and Leicester. P. Street Award for loss of house-proud wife. On 24th July we were delighted and pleased to read the headline in the Mail newspaper Award for loss of house-proud wife. Ian Knauer one of our wonderful fundraisers lost his dear wife Sally at the age of 46 to mesothelioma in Mr Justice Bean presiding on the case referred to Ian and Sally as an old fashioned couple whose division of labour was as it might have been in the 1950 s. Referring to the level Ian depended on his wife Sally, he said, Mr Knauer depended on his wife, she managed the household, she cleaned and cooked, changed beds, laundered and ironed clothes, did the shopping and walked the dogs, in addition she decorated the house when necessary and tended the garden. Ian and Sally have three sons Tom, Rob and Josh. Sally was exposed to asbestos while working as an administrator at Guy s Marsh Prison in Dorset for 10 years. The Ministry of Justice admitted liability but did contest how much Ian should receive in damages, but after hearing evidence of the work Sally did, the judge said Ian should receive total damages of 647,840, the bulk of which is for the loss of services of his wife. We send our very best wishes to Ian, Tom, Rob and Josh. Please could you sign this petition and also ask others to do the same: e-petition Provision of research funding into asbestos related diseases Responsible department: Department of Health The United Kingdom has the dubious honour of being number 1 in the world for the level of deaths occurring annually from asbestos related diseases. Around 2500 people will die this year alone in the UK from mesothelioma. Unlike many other cancer diseases, mesothelioma and the other asbestos diseases, have received negligible amounts of public money for research purposes. This petition calls on the Government to: Provide dedicated long-term funding for research into the causes, treatment, and potential cure of those diseases related to exposure from asbestos. To sign this petition please type the following in to your address bar https://submissions.epetitions. direct.gov.uk/petitions/59014/ signature/new 6 Mesothelioma Newsletter - Autumn Issue 2014 Mesothelioma Newsletter - Autumn Issue

5 MESO-02 Protocol amendment (approved April 2014) to add a new IMP (Carboplatin) will allow the option of using either carboplatin or cisplatin in the Phase ll study (clinician s choice) SKOPOS TRIAL JULY 2014 We now have 24 patients enrolled onto the trial and because of dropouts, the new target number of patients is 29. Mesothelioma cells have a lot of a protein calls 5T4 on their surface. This protein is not found in the body s normal cells to any significant extent. TROVAX is a vaccine that stimulates the immune system to recognise cells with 5T4 on their surface and hopefully kill them. SKOPOS is looking at whether TROVAX in combination with the gold standard chemotherapy regimen Pemetrexed-Cisplatin is feasible and stimulates the body s immune system to recognise cells expressing the 5T4 protein. Dr Jason Lester PIT: A Phase III Randomised Trial of Prophylactic Irradiation of Tracts in Patients with Malignant Pleural Mesothelioma Following Invasive Chest Wall Intervention As part of the diagnosis and treatment of mesothelioma, patients may undergo a procedure which involves inserting a thin tube into the chest wall enabling an internal examination and for any biopsies or samples of fluid to be taken. These procedures can result in the development of skin lumps or nodules along the tract created by inserting the tube. To try and reduce the risk of these nodules developing in the tract or at the site of the scar, radiotherapy can be given to the chest wall at the site of the tract after the procedure has been performed; this type of radiotherapy is known as prophylactic irradiation of tracts or PIT. Although many hospitals already give patients this type of radiotherapy treatment to the chest wall we still do not know if the treatment works. This trial has been designed to answer the question about the effectiveness of PIT radiotherapy. If PIT is found to be effective in preventing or delaying the development of these skin nodules then it can be offered to all patients as part of their treatment. However, if we discover that PIT is not effective this will save patients from undergoing ineffective treatment and having to spend time making unnecessary extra visits to hospital. The study opened to recruitment in July 2012 and we have had a lot of interest from consultants around the UK. As a result we now have over 50 sites open in England, Wales, Scotland and Northern Ireland. At this stage we not able to open the study to any new research sites. The target number of patients is 374 and so far over 200 patients have been included in the study. We would like to thank patients that have been willing to consider taking part into this study and our research teams in the UK for conducting the trial. The study is due to close to recruitment in June 2015 and analysis of the data will take place in early For more information about PIT please contact the Trial Manager Colin Lunt at or on RESPECT-Meso Study Since the RESPECT-Meso study opened at the co-ordinating site, Portsmouth Hospitals NHS Trust (PHT), in March 2014 for a 3 month run-in period, 3 patients and 2 carers have been recruited into the study. The run in period is now complete and the study is currently open to recruitment at and Norfolk and Norwich University Hospitals NHS Trust also. 3 sites are due to open imminently and 5 other sites have been selected and are in set-up with the aim to open in August The study team are also looking to open more sites following the successful set-up of these sites. The study team submitted Substantial Amendment 3 to ethics in April, which was successfully approved on 17th June This amendment included the addition of sub-group analyses of HRQoL at 12 and 24 weeks for patients based on the neutrophil, lymphocyte ratio and radiological staging, at selected sites, at time of diagnosis. If you are interested in becoming a recruiting site or would like to know more about the study, Please contact the Trial Manager or Trial Co-ordinator (contact details below) or alternatively you can visit our study website at Study Team Contact Details: Chief Investigator Professor Anoop Chauhan Trial Co-ordinator Dr Samal Gunatilake Tel: Trial Manager Laura Marshall Tel: x If you have any information you would like to share about your treatment experience please or telephone us on: Mesothelioma UK Charitable Trust Fundraising News Christmas Early Bird Note We have five new Christmas card designs which will take our collection to 9 and they will be available to purchase the first week in September. To order yours please contact us on our freephone and you can place your order and pay direct by phone, or us at We are now into the fifth month of our fundraising year and I cannot tell you how busy you have all been around the country raising awareness and funds for the Mesothelioma UK Charity. We have some wonderful stories to tell about fantastic achievements and personal goals and all the good and great things that are to come. July saw the many Action Mesothelioma Day events which were held and at the Leicester Action Mesothelioma Day I had the opportunity and pleasure in telling how far Mesothelioma UK has come since the Resource Centre began back in As some of you maybe aware our first Mesothelioma Specialist Nursing post was and still is held by Liz Darlison, she secured the original funding and was pivotal in setting up the resource centre as it was recognised that this was fundamental to improving access to specialist care and support for patients and their families. In late 2009 I joined the charity which is when financial independence came, which back then seemed a huge and at times an impossible task, but today just four years on we now have 4 further specialist nurses in Cambridge, Wales, Portsmouth and Bristol and later this year 4 more will start in Manchester, Oxford, Sheffield and the North-East. To give an idea of what this means for Mesothelioma UK, we fund 2 days per week of each post and each specialist nurse has local, regional and national mesothelioma specific responsibilities. They also support our aims and objectives and this costs the charity around 20,000 per year to fund each individual nursing post. Subject to funding, we hope to fund 2 more nursing posts starting in 2015 which will be 11 specialist nursing posts funded by Mesothelioma UK in the UK. Our ultimate aim is to fund a total of 18 specialist nurses in England, Scotland, Wales and Northern Ireland. The UK has the highest number of sufferers in the world which is why it is vital that we continue to push for research, not only for this generation but to help protect future generations. Asbestos is prevalent in this country and will be for a long time to come which continues to put us all at risk, so investment into researching the causes and a potential cure is desperately needed. The theme for Action Mesothelioma Day this year was to call for long term investment into mesothelioma research and we very much support this initiative and do hope that you will all sign the petition. Our current fundraising target is 426,000 for the 2015/16 year and our vision is that this will happen and we will progress and meet our aims and targets because of the wonderful support we receive everyday from you our fundraisers and sponsors. I speak on behalf of the Mesothelioma UK team and Trustees when I say that we feel privileged to do what we do and to be given the opportunity to meet some truly inspirational people. Jill Lemon Fundraising & Marketing Manager Mesothelioma UK Freephone Details of all sponsorship, donations, fundraising and successful grant applications are posted on our website 8 Mesothelioma Newsletter - Autumn Issue 2014 Mesothelioma Newsletter - Autumn Issue

6 Jodie Ecclestone Hollywood Summer Charity Ball From what started off as a brief conversation in February 2014 with my ward manager about how much fun it would be to have a Hollywood summer ball, it then turned into us doing a charity ball for Mesothelioma UK. I work on a busy respiratory ward at Derriford Hospital in Plymouth and everyday we see many people with various lung conditions. As of late we have started to look after more patients who are suffering with Mesothelioma. Many people, including staff members, were sometimes unsure of what Mesothelioma is and it was obvious this is a condition that isn t well known. Our mission was to raise money and awareness for Mesothelioma sufferers and for families who have lost a loved one through this terrible condition. I had some (MELU) Mesothelioma & Lung Luncheon Club for Leicestershire patients The Lung Team at Glenfield Hospital held a patient focus group meeting last year for mesothelioma and lung cancer patients in the East Midlands area to try and ascertain what they felt they needed in terms of a support group, it was made clear that the patients did not like the word support group as they felt it implied they were needy. With this in mind they were asked what they would like; the group all felt that social meetings would be far more beneficial to them. The first social meeting was held in March at a local Golf Club where a short walk was organised down the sidings of a steam train line and then afternoon tea back at the Golf Club. The patients and carers introduced themselves and talked about their journeys so far. Everyone felt the social meeting had been a huge success and definitely wanted to get involved and so the next date was booked and we met in May at a garden centre where the group was treated to a behind the scenes look and tour of the greenhouses and then lunch where the group were able to chat and socialise. From this relationships have been forged among the group which after discussion has now been named The MELU Luncheon Club combining both mesothelioma and lung. The group is a mix of ages from 46 to 83 which seem to work really well. The third social meeting was in June and the group was treated to a Steam Train ride, one of the group members who volunteers on the railway kindly took the fantastic support from Caitlin Thomson, marketing assistant for Novum Law and they very kindly sponsored our Charity Ball. Without their kind donation, the ball wouldn t have been able to go ahead. So, on Saturday 26th July at The Elfordleigh Hotel, Plymouth, 120 people, friends, families, colleagues from Derriford Hospital and Novum Law gathered to raise as much money and awareness for Mesothelioma UK. There was a raffle of which prizes were donated by staff members of the respiratory ward, local hairdressers, local restaurants, a signed group to tour the engine work sheds and on the train for the return journey back, for lunch. Our aim is for the MELU Luncheon Club to be available for all mesothelioma and lung cancer patients and their carers to meet out of the hospital environment so they feel comfortable, less isolated and can share their experiences and to enable and enhance their quality of life. Social Prescribing is now on the health agenda and research shows that a collaborative approach to tackle social as well as medical causes behind complex health issues has a real benefit and that social prescribing can improve health outcomes for people with long-term conditions and reduce demands on the health system. GP s are behind this approach and we should encourage Social Prescribing into the mainstream of caring at its best for everyone. For more information about joining the club please contact Sharon Savory on or Jill Lemon on Manchester United shirt and a signed Arsenal photo. We also had a professional photographer and she very generously has donated money towards the charity herself. The night was a massive success, and although it was very stressful in organising what 118 people were going to eat, where they were going to sit and making sure that everyone generally had a good time, all those I have spoken to since could not thank me enough for putting on such a fantastic night and all in the aid of charity. The grand total raised was 1, and I am absolutely over the moon and I am bowled over by the generosity of all those who attended and the huge amount that has been raised and especially since this is the first charity event/ball I myself have ever done. There are so many people to thank that made the night such a huge success, and you know who you are so a BIG THANK YOU one and all. Written by Jodie Ecclestone A few words about the Summer Ball from Andrew Stinchcombe, Partner at Novum Law It was a complete and utter pleasure for Novum Law to be involved and to sponsor the Hollywood Summer Charity Ball in support of Mesothelioma UK. It was fantastic to see all the people there including local Respiratory Consultants and Lung Cancer Specialist Nurses from the Derriford Hospital. The Ball included a delicious three course meal, a raffle and live music which everyone continued to enjoy well into the early hours!! Emma Wilkinson, Respiratory Nurse opened the speeches and thanked all those for giving their time and support, I was able to say a few words on behalf of Novum Law and how delighted we were to able to be help and support Jodie Ecclestone with this wonderful event of raising funds and awareness in support of Mesothelioma UK. A very moving speech was then given by Kieran Brewer, son of the late Debbie Brewer who sadly died from mesothelioma after a long fight against the illness. I have to say a wonderful evening was had by all. Cheryl Wright and Suzette Tonks Leicester to Skeggy Challenge Cheryl and her sister-in-law Suzette came up with a fab idea for raising money and awareness in support of Mesothelioma UK when Cheryl s lovely Dad Keith Tonks was diagnosed with mesothelioma. Both Cheryl and Suzette were desperate to do something positive, read how it all turned out. Dad was diagnosed with Mesothelioma back in March. He went through a major operation which involved the removal of the lining of the lung, the diaphragm and the covering of the heart on one side of his chest. He is now recovering and is thankfully getting stronger each day. We were obviously devastated that Dad who was such a fit and healthy man should get this disease. Before this we had never heard of Mesothelioma so decided we wanted to do something to raise awareness. This is when Suzette and I set about organising Leicester to Skegness by any means without a motor. There were 28 of us altogether including a support crew that took part, so at 7am on Saturday 28th June a group of us set off on our bikes to cycle and run the full 80 miles and a group of runners set off from their start points doing a relay. Our first pit stop was at the 25 miles mark where we put our bikes in the support cars and ran the next 12 miles. Personally speaking, this wasn t my favourite part!! I have run quite a few races of various distances, even a couple of marathons, but this has to be the toughest run I have ever taken part in!! It was quite hilly in places and with no paths for most of it which made it quite scary how close oncoming cars would get to us!! We all made it to the next pit stop though where we carried on our journey on our trusty bikes. The weather was getting a little warmer as the day went on but the clouds and breeze managed to keep us cool. It was the most amazing feeling arriving at the Seal Sanctuary in Skegness and seeing my Mum & Dad stood there with everyone else who had taken part, all cheering us on as we cycled up to them. After a short rest we then got shaking the collection buckets as we made our way down to the Clock Tower before tucking in to some well earned fish and chips. The whole day was totally amazing!!! Everyone who took part did a fantastic job, especially our support crews. They were always there with the water, bananas, jelly babies and chocolate, whatever we needed. The 3 main aims of this challenge were to raise awareness, raise money and have fun. I can confidently say, we smashed all 3, having raised just over 4,000. I can t thank everyone enough especially my lovely mum Carole, sister-in-law Suzette, my brothers Ian and Keith, our group of relay runners, Mark Thompson, Julie Thompson, Chris Murray, Amanda Crouch & Jo Hughes and our support crews for their vision, hard work and wonderful support, not just with this challenge but also since Dad was diagnosed with this dreadful disease, thank you. Written by Cheryl Wright Tina Poultneys Coffee Morning On Sunday 29th June 2014 we held a coffee morning, tombola and cake sale in aid of Mesothelioma at Edinburgh Woolen Mill store at the Woodlands garden Centre in Stapleton near Hinckley. Staff and families helped out, volunteering their time, making cakes and donating various gifts, Ryan aged 6 made loom bands and sold them, they were very popular. It proved to be a very successful day and in total we managed to raise 250! We had an excellent response in raising awareness during the day. Thank you to everyone who helped to make the day a success. Share your Fundraising stories with us contact Jill Lemon on Mesothelioma Newsletter - Autumn Issue 2014 Mesothelioma Newsletter - Autumn Issue

7 Jean Miles Coffee Morning Jean held a Coffee Morning and Cake Sale to raise awareness and funds about mesothelioma. It was a beautiful sunny morning and was very well attended. There were cakes in abundance of all shapes, sizes and flavours, a raffle was held with lots of prizes and the morning raised a wonderful Thank you to all the ladies and gentleman who came and kindly supported this event. James Edwards - Running Bootcamp Challenges for Mesothelioma UK Charitable Trust because they helped comfort our DAD when times got tough Tom & Hats Skydive David Wingate Read what James had to say Our amazing DAD (Edsey), was diagnosed in February 2011, He was given months but fought a tough battle for 3 years. He finally lost his battle on the 2nd March During his 3 year battle his words where IT IS WHAT IT IS and lived his life to fullest, and enjoyed every day as it came. He will be sadly missed by Joyce (HIS WIFE), Lee, Jamie, John, Dave, Mark, Kerry, Paul, Michelle, Sonia and Emma (KIDS) and by all who knew him. This charity helps people like our dad live as comfortably as possible with the horrible disease, so please rest assured that all donations will be going to a very good cause. To date James has raised a fantastic incl gift aid. Tom & Harriet have been raising funds by taking part in a Charity Skydive in memory of their lovely Dad Adrian, this is what they had to say. On the 29th January 2014 our dear Dad passed away after a brave 4 year battle with Mesothelioma. There is no found cure for this cancer and your prognosis when diagnosed is terminal. Mesothelioma is mainly a chest cancer that develops between 15 and 60 years after exposure to asbestos. Only six per cent of the UK population know what the disease is, yet this deadly cancer kills one person every five hours in the UK. The rising number of deaths from the condition is linked to the use of asbestos in the building industry up until the mid 1980 s and it doesn t discriminate, it can affect anyone even if you haven t worked with it you may have been exposed through a secondary route and all it takes is one fibre inhaled. Please help us help Mesothelioma UK, a resource centre dedicated to supporting Mesothelioma patients and their families. Tom & Harriet raised a huge 4, and send their grateful thanks to all those who have supported them David Wingate, Partner at one of our longstanding Bronze Sponsors, WE Solicitors LLP, will be cycling from London to Paris on 6th September 2014 in support of Mesothelioma UK. That s 273 miles in 24 hours! David said my biggest worry is falling asleep whilst cycling which I managed to do on Sunday morning on my way from Manchester to Blackpool! I am aiming to raise at least 1,000 in support of the great work done by Mesothelioma UK. I hope that in the very near future all mesothelioma sufferers will have access to the specialist nursing care and support they need. Donations of all amounts are most welcomed as vital contributions to my somewhat ambitious target and can be made via my Just Giving Page. https://www.justgiving.com/david-wingate1/. Good Luck David we hope you have a padded seat! The Fab Five Sisters Carole, Debbie, Tessa, Julie and Mandy The Fab Five Sisters come from Frome, Bath and Midsomer Norton organised a fayre last year and have done several fundraising activities in support of Mesothelioma UK and this time their Mum Marilyn and Grandmother Ethel have been busy with their knitting needles... This is what Carole had to tell us. This time our grandmother Ethel decided to get involved in fundraising so along with our mum Marilyn out came their knitting needles and during the stormy weather of last winter and well into spring what busy knitters they have been. They ve made a number of hats, gloves and our Grandmother decided to also knit the Jean Greenhowe Mr Jingles... a large knitted character inspired by Christmas, he has a Christmas tree and snowman on his hat, a robin on his stick and Christmas puddings on his boots an altogether very colourful character!. She knitted a hedgehog, postman and a teddy bear called Jim, all three characters were raffled on her 94th birthday on March 4th to raise more funds for the mesothelioma charity. Together with mum Marilyn they have sold their wares they have lovingly made and collectively have raised a fantastic and us girls are so very proud of our inspirational Grandmother and Mum and they still haven t finished knitting yet!!! Mesothelioma UK would like to send our very best wishes to Ethel for celebrating her 94th birthday. Barry Guest s Zip Wire Challenge Barry has taken part in a Zip Wire Challenge and has raised a fantastic and he did this in memory of his wonderful elder brother George... this is what Barry had to say... I hadn t realised the depth of despair a cancer can inflict on a person, their family and friends until my elder brother George contracted Mesothelioma and I saw a giant of man reduced to a shell of his former self. The diagnosis came 50 years after contracting the disease from working with Asbestos as a young man building railway carriages. His adult life 25 years of which he was as a soldier, was a Father to four children and a friend to all who met him. Barry would like to thank all those who supported his challenge. Brendan Gibbons Off with Hair It s probably almost 14 years since I last cut my hair...no really. Some of you may only know me with the long hair, some of you may have never known me with it at all. Rather than just cut it off and have the moment go unnoticed, I thought it would be a good chance to raise awareness for my chosen charity. Mesothelioma is a form of cancer you most likely haven t heard about, neither had I until my Mum passed away with it a number of years ago. Thanks for taking the time to read this, and I m open to style suggestions for the new hair cut! Well he did it and very nice it looks too and Brendan raised a wonderful Maggie Gaunt s London to Paris Bike Ride Bike Ride doesn t really put into words what this huge challenge was all about, this was an epic journey reaching highs and lows but made all the more special because it was a journey made in memory of Maggie s lovely Dad, Maurice Jamieson. This is her story. Last year my friend Rosie stopped me in the high street and asked if I would like to cycle from London to Paris with her, I agreed without hesitation little did I know what I was letting myself in for Straight away I thought this would be a great challenge to carry out in memory of my dad and I am very happy to be able to undertake this to raise money for Mesothelioma UK. We will be cycling 234 from Twickenham London, to the Arc de Triomphe Paris, in three days! When my dad was diagnosed with Mesothelioma cancer two years ago very little was known about this disease and this still remains true today. Due to the limited treatments available and no cure, sadly we lost him 8 months later. Now we have had the chance to research into this disease we have realised how lucky we were to have had him for 88 years but some people are not so and this disease affects much younger people. The number of people affected with this asbestos related cancer is rising and currently effects more than 2500 people a year in the UK. With no financial support from the government your sponsorship will allow mesothelioma UK to continue to provide information and support to both patients and their families with this disease. One of Their long-term aims is to provide specialist nurses to all the high-risk areas in the UK. All the money raised will go directly to the charity and I would be very grateful for any given donations. With a dad that was always ready and determined for the next adventure straight away this challenge seemed fitting. With only eight weeks to go I am cycling between 25 and 30 miles 4 times a week and looking forward to the challenge in June! Maggie completed this wonderful challenge and raised an amazing 2, Sam Stretton Sam s Scream for Meso Sam has taken part in the Zip Wire Challenge in Wales, it is the longest in Europe and you can reach speeds of up to 100 miles an hour. This is Sam s Story... I started supporting Mesothelioma UK with mum 8 years ago and now continue in her memory. This year will be my biggest ever challenge and Mum would be amazed. I want to push myself to do things outside of my comfort zone as I realise that asking for your support deserves something above and beyond the norm. For this year I am sliding from the top of a mountain in Wales, on a bit of wire, for a mile at approx. 60mph. When Mum was diagnosed she was told she had more chance of winning the lottery than contracting the disease so it can happen to anyone of us at any time. Asbestos is still around so please please spare even just a pound to spur me on, help remember my mum Glenda, as I do every day, and help the research so desperately needed. Every donation, regardless of size, is gratefully received so thank you for your time and support. See you on the ground!! Lots of love, Sam. Well she did her challenge and reached speeds of 90 miles per hour.. Well done Sam and she raised an amazing incl gift aid. 12 Mesothelioma Newsletter - Autumn Issue 2014 Mesothelioma Newsletter - Autumn Issue

8 Dam ie n F lo r ia n rch M ay la a l Ltd nme n t En v iro g G o lf Day is in Fu n dra ra is e d An t o n ia H o p k in s L o ndo n 2 Br igh ton 100k in me mo r y of Gar y Br it ne ll 1, a lms le y & An dre w W a n t h e e rs r Pe te Wa lt e K il le r M il p o Mo w C d 65 a n d ra is e Mar Be ave r b k Wa in ro o k s B lac k p o o 10k we l I ra n 10 ll I did it!!! K in 57 m in u te s a n d 32 se c o nds and ra is e d We ll do ne M a r k! a is e d mi t h r Ala n S g in r u n n in r b ro o k s ave t h e Be n Run 10k Fu ue rde n G rah am D ing 7.50 r u n n ra is e d 20 l 10k t h e Br is t o 14 I have undertaken to embark on several long distance cycle rides this year. The first is on 4th May and is 60 miles in total. Whilst improving my fitness I want to raise funds for some very underfunded and little known charities whose work is close to my heart. The first charity I have chosen to support is Mesothelioma UK. Mesothelioma is an incurable cancer that is caused by exposure to asbestos. As you all know I work in the asbestos industry and my husband was an asbestos stripper for almost 20 years. I hope my family and I never need the services of this wonderful charity but I want to support it as much as I can. Juliette s bike ride raised An ne C a m pb e ll is ge t t ing a Fo rge tme -No t Tat t o o a nd h as r a is e d a wo n de r f u l 1, K at h B ur ro w s Ch ar it y Even ing in m emor y of Le s B ur ro ws ra is ed a won de rf ul 1, An d re w ra i s e K i n d le ys r u n n d 272. ide s 50 i ng t he Half M ar Le e ds at h o n H a n n ah Re ra is e d ub e n r u n n ing t h e Edin M a r a t h b u rgh on e o rg iade s Me la n ie G the at ra is e d 3 BUPA 10k ddo n Emm a G li ly mo u t h ra n t h e P at h o n in H a lf M a r ly f h e r lo ve me mo r y o G ra n d ad Juliette Church - Classic Oxfordshire Bike Ride page Adr ia n Ju d BUPA son 10 S u nd a k M a rat h o y 25t h Ma n on with y 201 f am il 4 y K at Ade, A he nge la, Jo h n r ine, Jo e in,l me mo r y o f au ra & R ay B t h e ir uc k e e d ad f or Birt h d ay. h is 70t h 2, Mesothelioma Newsletter - Autumn Issue 2014 Anna & Will have completed this wonderful challenge and have raised a huge 6,860.00, this is their story.. ll is ra is e d Br ia n Wa at t h e t h or pe Br u n t ing Air Sh o w H ay l e Q u i z y Wr igh t he l i n he d and ra i s e r Dad s l a ocal daw on de r f u l nds f r ie s y le ld a Lil e he Tr ic i e v i l l ag t h e i n t h s t a l l at e g ok a b o ua l Vi l l a a i r n n A ow F b a r r 0.00 i n l e e Wh i s e d 7 Sm i t h ra ne a n d y o f An r o me m oyano v a K ra s s i St la n d G re at M id Fu n R u n y of in me mo r Do ug B o o t Anna & Will Britnell - Walking 100km for Mesothelioma UK Charitable Trust because we want to raise money and awareness. Will and I are walking 100km (no that s not a typo, it s about 62 miles throughout the day and night!) for the Mesothelioma UK charitable trust. In July 2012 our dad was diagnosed with mesothelioma; a cancer caused by asbestos. After having 5 operations (one of which lasted 12 hours), 2 lots of chemo and endless hours spent in hospital he sadly passed away on the 11th of February 2014, 20 months after diagnosis. Mesothelioma UK provide valuable information and support on this awful disease that has no cure, and we re hoping to raise awareness as well as money to help this charity continue the great work they do. WE DID IT! 25 hours and 20 minutes. Hardest thing we have ever done. Walking through ankle deep mud, walking through the night, ankles knees and hips in agony, toenails abandoning ship and blisters to be proud of. But it s all paid off because LOOK AT ALL THE MONEY WE VE RAISED! Thank you everyone!! The generosity, support and encouragement we have received has been incredible. As everyone has said, our dad would have been so proud of our achievement and the amount we ve raised for Mesothelioma UK. So here s to you dad! Xxx Running for Ray - Adrian Judson & Katherine, Ade, Angela, John, Laura and Joe We are the running the Bupa 10K on 25th May in memory of Ray Buckee, raising sponsorship for Mesothelioma UK. We lost Dad to Mesothelioma in September last year. Mesothelioma is a shocking and cruel cancer and we hope we will raise some funds to support this worthy charity. We miss Dad terribly and words can not express how sad we feel about our loss. This run will help us mark what would have been Dad s 70th birthday. These wonderful runners have raised a fantastic 2, Sara Heppenstall s 13.1 MILE MISSION running for Mesothelioma UK Charitable Trust because they do amazing work!! I started running about three years ago (when I was 2 stone heavier) at which point I couldn t go for longer than one minute! Through sheer perseverance and dedication I ve built it up and done a few 5km s and two 10km s in I always wanted to aim for the half marathon in the year I turned 30, well, 30 is fast approaching... 3rd May 2013, and the Sheffield half marathon is a week later so its on! I am running to raise money for Mesothelioma UK. If you could take the time to look the charity up I think you will see that it s a very good cause. Sarah raised a fantastic Louisa Mead, Fleet Half Marathon On Sunday 16th March, I ran the Fleet Half Marathon in loving memory of my Dad, David Bevis. Dad passed away from Mesothelioma on 3rd April He had been admitted to hospital at the beginning of that year with suspected pneumonia and his health went rapidly downhill from there. In his early career he was an industrial chemist and his exposure to asbestos would have been from his time at work. In the last couple of years before he died we always knew winter had arrived when Dad started coughing, little did we know that this would manifest into a debilitating disease that took his life at the age of 66. Dad had retired in September 2006 and had booked a holiday of a lifetime with Mum to America in November 2007 to coincide with my wedding in Las Vegas. My eldest brother walked me down the aisle in place of Dad. A really special memory that remains with me is that my husband had the opportunity to ask Dad for my hand in marriage and I had a little photo of Dad and me in my bouquet. I haven t run a half marathon for four years as the last time I did it I was two weeks pregnant and didn t realise! My husband has been a great support as he has been taking care of our four year old son enabling me to go out on training runs, even though some of them were at 6am on Sunday mornings in freezing winter temperatures. I wanted to raise money to commemorate the anniversary of Dad s death and knew that running for Mesothelioma UK would inspire me to run the distance! I ve had 41 donations totalling so far and the support has come from far and wide; including Australia, New Zealand and Indonesia! My work was a big sponsor, donating 200 and they printed text on my running vest which really helped during the race as the crowd kept cheering come on Lou Lou. It was a fairly warm spring day but it didn t stop me getting a personal best of 2 hours and 12 minutes. I had to dig deep in the last mile or so and even asked Dad to run with me for the last half a mile so he was definitely with me in spirit and helped me along. I m really proud to have helped Mesothelioma UK and to have run the race of my life in loving memory of my Dad. I think about him every day and it still seems odd not to have him around. Louisa Mead, age 35. Mesothelioma Newsletter - Autumn Issue

9 Dan Jones - The Subway Surfer I can remember it so clearly, it was the day of the General Election in 2011 and I was walking down to vote with my Dad when he said I have something to tell you, I just knew what he was going to say next and sure enough it was that he had been diagnosed with Cancer. At that time we had never heard of Mesothelioma but out of nowhere it was to become a huge part of our lives. Hearing that made me realise, perhaps for the first time, that my Dad wouldn t be there forever and although thankfully he has battled the disease and is currently very healthy, it had and still does make me think about my own life. At that time, I was not very happy with my job and having never really seen much of the world outside of beach holidays in the Mediterranean, I decided to make a change. A friend had planted the seed in my mind of living abroad and teaching English as a second language. This seemed as good a way as any to see other corners of the world, so I undertook a course and in January 2012, I signed up for four months of teaching at a primary school in Beijing, China. Once in China, opportunities presented themselves and I made the decision to stay on longer than my initial contract. Fortunately for me, I have always had the support of my parents. Although I am happy in Beijing and live a good life, I do often think about my Dad and his health and wonder if I have made the wrong decision being out here for so long, being so far from home and only being able to spend a few weeks with my family each year, during the summer. But at the end of the day, my Dad supports me, and he wants to see me happy, and because of that love and support, I wanted to do something for him and other people battling Mesothelioma. I came up with an idea a few months earlier, to visit every single subway station in Beijing. I would stop at each station to take a photo as proof whilst raising money for charity. This would be no small task of course, as Beijing is the third longest subway network in the world with 232 stations and 289 miles of track. Plus with 10 million daily users, I would have to do my best to plan a route that avoided the busy lines at peak times. After a month of planning and preparation, the day arrived and I woke up at 4.30am on Sunday 29th June, as I wanted to try and catch a train as early as possible. I lived closest to Line 1, and in fact, I lived at the very start of the line. A quick shower and final check of my supplies and I was on my way. I wasn t to be alone however, my Chinese friend Karen had agreed to join me on my adventure, providing conversation as well as acting as my photographer and translator. So at 5.31am, we were heading westbound along line 1. I planned to complete line 1 first, as it is famously the busiest line of all, and I didn t particularly fancy jumping on and off a packed train if I could possibly find a way of avoiding it. It s probably at the point that I should explain how I would go about getting the photo at all the stations. I would be leaving the train at every stop and having a snap taken on the platform with the station sign in the background. Before I knew it, line 1 was completed and with one line done in just under an hour perhaps foolishly I allowed myself to believe that if I could visit 22 stations in 57 minutes then 210 more before 11pm would be as easy as well riding a subway train! Along with Karen, I did have one other person in my support team, Rachael, my little sister, she would be updating friends on Facebook of my progress in live time. And it was at this point, having completed my first line that she posted her first status about my journey. The day was long and one thing I hadn t accounted for when I d fantasized earlier in the day of doing all 232 by 11pm, was that the lines heading out of the city into the suburbs had no transfer stations and of course that would mean that I would be required to ride the train all the way back into the city, this could take up to an hour and believe me, it often did, though I was glad of the chance to rest my tired legs, I couldn t help but consider it as lost time! By 11pm, I had managed 182 of the 232 stations and decided to visit the final 50 the following day. I started a little later this time, at 7.30am and completed my challenge six hours later, which meant I had spent a grand total of 23 and half hours riding the Beijing Subway. It was an amazing experience, and though I got a lot of stares from other Subway users as I dashed out at every station for my photo and back on again, not to mention how exhausting it all was, it was worth it. I feel a real sense of achievement, to have raised money for an amazing cause and to done this for my Dad and other people s Dads and Mum s too! Finally, I just want to thank everyone who donated and gave me words of encouragement, it s you that kept me going throughout my journey. Thank you The Mesothelioma UK Charitable Trust exists to raise funds to support the services provided by Mesothelioma UK and any sponsorship, grants or donations made to the charity support this. Mesothelioma UK Charitable Trust would like to thank all of our wonderful sponsors. If you would like to find out more about becoming a Corporate Partner or Friend contact our Fundraising Manager Jill Lemon on Mesothelioma Newsletter - Autumn Issue 2014

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