mesothelioma uk newsletter · 2019-11-14 · 2 mesothelioma uk newsletter - autumn issue 2017...

Mesothelioma UK

Autumn Issue 2017

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NewsletterWelcome to our Autumn NewsletterWhat a busy spell the ops team have had! Mesothelioma UK have MOVED. We are now based in offices two miles from our previous hospital host. You can find us at Greenacres, The Sidings, Leicester LE4 3BR. The freephone number has not changed but everything else has - below are the charity’s new contact details and each member of staff is [email protected]

A huge thank you to all of our wonderful supporters and fundraisers; this newsletter is littered with your successes. Without your help we simply couldn’t carry on and there is absolutely no doubt through the services we provide and our amazing team of nurses, we really are having a huge impact on improving experiences and access to treatment and care. We are delighted to welcome nurse 14, Rachel Thomas who took up her post at Guys and St Thomas’s hospital in London over the summer. This is the first of two London based posts that Mesothelioma UK is establishing. The second is funded through the Pat Stone Mesothelioma Support charity, will be based at Barts and will commence over the autumn. Exciting times. With further posts planned for Liverpool, Kent and Southampton, bringing us up to 18 clinical nurse specialists (CNSs) dedicated to mesothelioma, we are looking forward to increasing the impact the charity can have, to reaching more people affected by mesothelioma.

Whilst talking about our CNSs we said a fond farewell to Jan Devlin over the summer. Jan set up the first Mesothelioma UK CNS post in Scotland and we are extremely grateful for all that she has achieved. Good luck in your retirement Jan and sincerely thank you so much from all the Meso UK team. We look forward to announcing your successor soon and hope to increase the Meso UK nursing presence north of the border in the coming years.

We are delighted to have more mesothelioma clinical trials open than ever before. The trial insert has more information about the different options available. Please talk to your clinical team about the appropriateness for you or feel free to contact the Mesothelioma UK helpline where one of our nurses will be more than happy to talk you through the trials available in the UK.

We hope that readers are comfortable with our front page plea for supporters to consider leaving a donation to Mesothelioma UK through a legacy, in life or otherwise. Mesothelioma UK’s income through legacies is very low in comparison to other charities so we are having a measurable push to raise the profile of this opportunity. If you have any ideas or comments relating to this we would love to hear from you.

We hope that you enjoy reading the newsletter.

Sincere best wishes to you all,

Liz Darlison

Leaving a legacy gift in your will

Once you, or a loved one dies, it’s not too late to support us in our work to help others. You can arrange to leave a gift in your will, as a lasting legacy that will truly benefit others who have been affected by mesothelioma.

Legacy gifts can have a huge impact on charities like us, which rely solely on donations and sponsorship. They can play a significant part in helping us to achieve our goals to:

• be a ‘One Stop Shop’ for up to date mesothelioma support, information and education

• provide funding for Mesothelioma Nurse Specialists

• provide funding for research dedicated to mesothelioma

• support the NHS to drive up standards and ensure equitable access to world class treatment, trials and care

• help the UK to lead the way in making mesothelioma history through world class audit, research and clinical trials

• raise the profile of mesothelioma to help prevent future cases of asbestos-related disease

Receiving a gift in a will is an honour; it reminds us of the commitment and generosity of our supporters and helps us to plan for the future. Legacy gifts and donations help to make long-term research and trials possible which will hopefully help us to beat mesothelioma one day.

No matter how big or small, every gift left in a will is an invaluable contribution to us and used to help others.

For example:

• A gift of £50 will cover the Mesothelioma UK helpline and email service for 1 hour and £400 will pay for 1 day

• A gift of £2,000 would fund a Mesothelioma Nurse Specialist for 1 month

A gift to Mesothelioma UK is a gift for those with mesothelioma.

Mesothelioma aims to be there to help and support patients and families throughout their journey and right up until the end. We could not do what we do without the generosity of our supporters who raise money through running, baking, skydiving, shaving heads and a whole host of other events.

Jan Devlin

2 Mesothelioma UK Newsletter - Autumn Issue 2017 Mesothelioma UK Newsletter - Autumn Issue 2017 3

The Scottish Government’s Cancer Strategy does not mention mesothelioma and our health boards have no mandate to develop mesothelioma services.

Mesothelioma is also not audited in the same way. Very basic data is collected but only against performance indicators for lung cancer.

However, the argument to develop mesothelioma services across Scotland is gaining traction and we’ve held various positive and productive discussions with charity partners, support groups and Government including a Parliamentary debate dedicated to mesothelioma. Liz Darlison, Director of Services from Meso UK has also met with the Scottish Health Minister.

In June this year, 25 people gathered in Glasgow including representatives from Meso UK, clinicians from all over Scotland, and patient and carer representatives, all supported by Macmillan. The discussions covered where the gaps are and what is important to patients.

Subsequently, the development of a national mesothelioma network is under consideration

and funding bids are being explored. The design of the individual elements of that network are critical to delivering a quality diagnostic service across Scotland.We need information to be fed into a national Multi Disciplinary Team to enable access to diagnostics and clinical trials. We can then make studies available to all Scottish patients.

Discussions about the network and its funding are ongoing with Scottish Government. In the meantime, the Mesothelioma team in Glasgow is very active with £1 million of external research funding for new diagnostic tests and treatments.

Our fantastic Meso UK Clinical Nurse Specialist, Jan Devlin is retiring so we thank her for her efforts and wish her all the best for a happy retirement. Carolyn McRae is being appointed as the new CNS and we look forward to working with her.

We’re working hard to make a difference for mesothelioma patients, their families and carers in Scotland. For further information on how you can get involved, please contact the Meso UK helpline or get in touch with your local MSP to encourage Governmental support.

Scotland has the highest global incidence of mesothelioma and we have a different challenge to the rest of the UK. Whereas, in England and Wales, mesothelioma treatment is subject to waiting times guarantees, mesothelioma is excluded from that process in Scotland.

The state of mesothelioma treatment in ScotlandBy Dr Kevin Blyth, Consultant Respiratory Physician, NRS Senior Research Fellow and Honorary Clinical Associate Professor at the Institute of Infection, Immunity & Inflammation, University of Glasgow

Nurse specialists brief ARCA members

ARCA is dedicated to promoting safety and professionalism throughout the licensed asbestos removal industry.

Meso UK nurses met over 100 ARCA members during the series of events and explained their work in supporting patients suffering with mesothelioma and their families, the charity’s plans for the future and how ARCA members’ fundraising has supported the charity.

Steve Sadley, Chief Executive of ARCA, commented: “I was delighted Mesothelioma UK was able to attend our member meetings and explain their excellent work.

“Last year we raised funds through a number of events including a dedicated Charity Week when ARCA members took part in many different activities. This year we hope to raise further funds during our Charity Week in September.”

During July, Mesothelioma UK Clinical Nurse Specialists attended ARCA (Asbestos Removal Contractors Association) member regional meetings in the South West and Wales, Midlands, North West, North East, South East and Scotland.

Jackson Review of civil litigation costsThere was good news at the end of July for future victims of mesothelioma and other asbestos diseases looking to pursue claims for civil compensation when Lord Justice Jackson published his latest report (Review of Civil Litigation Costs: Supplemental Report – Fixed Recoverable Costs), part of his ongoing review of the civil justice system. The aim of the review is to simplify and cut the costs of civil litigation.

Proposals floated last year would have seen the introduction of fixed recoverable costs (the costs that the plaintiffs can recover from defendants if they win their case) for personal injury claims worth up to £250,000. This would have affected most asbestos disease cases. The Forum believed such changes would seriously disadvantage asbestos victims, pitted against powerful and well-resourced defendants, who could only afford to pursue their cases under conditional fee agreements.

The Forum wrote to Lord Justice Jackson and met with him at the Royal Courts of Justice to raise our concerns. Vivienne Swain, a member of Manchester’s Living Well with Mesothelioma Group, and Carl Heneghan, who lost his father to asbestos-related lung cancer, explained why these proposals would be unfair to asbestos victims and impede access to justice.

The good news is that Lord Justice Jackson has listened to the concerns raised by the Forum and others, and claims for asbestos diseases will not be subject to restricted costs in the proposals outlined in his report.

Forum vs Cape and othersThe Forum has started legal action to try to obtain documents that could shed more light on how much was known by industry about the real dangers of asbestos. These documents formed part of a court case that concluded before judgement earlier this year. Both sides in the case had agreed to destroy the documents but the Forum was able to secure an injunction in April and the documents were lodged with the court for safekeeping.

On 10 August, the judge considering the case issued a further decision allowing the Forum to proceed with court action without the risk of paying legal costs if we lost. The substantive hearing, where we will argue for the documents to be released to us, will take place over three days in October.

Asbestos lawyer Harminder Bains of Leigh Day Solicitors, who represents Mr Graham Dring on behalf of the Asbestos Victims Support Groups Forum (UK), has welcomed the judgment handed down by Master McCloud in the Royal Courts of Justice. Harminder, together with Robert Weir QC and Jonathan Butters of Devereux Chambers, will represent the Forum at the hearing in October. All are acting pro bono.

Phoenix HouseWe heard further good news in July when the Department for Work and Pensions (DWP) announced that they had decided not to go ahead with plans to close Phoenix House in Barrow. Phoenix House is the specialist office that deals with industrial injury benefits and lump sum payments for victims of asbestos diseases. There is a wealth of experience and empathy within this office and asbestos victims would have suffered if this expertise had been lost.

The DWP has guaranteed that the Barrow office will remain open until at least 2023. This result is down to the effective campaign run by the union representing workers in Phoenix House, the PCS. This campaign was greatly helped by all those who signed the Forum’s open letter to the Secretary of State, highlighting the willingness of individuals and organisations across the board to defend services that benefitted those people suffering with asbestos diseases, and those still to come. Thank you for all of your support.

Asbestos Victims Support Groups Forum UK - Information Round-UpBy Graham Dring, Chairman of DAST

UK & Ireland Peritoneal Meeting

It will feature keynote lectures from internationally renowned faculty, didactic sessions, debates, and case presentations. Additionally, there will be extended discussions among the various panels and audience participation.

The target audience includes healthcare practitioners in the field of surgical and medical oncology, gastroenterology, radiology, gynaecology, and pathology.

A dinner will take place on the evening of Thursday 19 October, in the Medical Residence, 59 Eccles Street (opposite the hospital). Refreshments will be provided during the meeting. To register for this meeting please log on to the following link https://matersurgery.ie/2017-meeting-registration

The 2017 UK & Ireland Peritoneal Malignancy meeting will take place at The Mater Misericordiae University Hospital, Dublin, 19-20 October. This one and a half day conference will cover a diverse range of topics on peritoneal metastases.

During the charity week, ARCA staff will be taking part in three different sport marathon challenges. The challenge for the ARCA team is to play a sport continuously throughout a working day. So, during the Charity Week the team aim to complete a table tennis marathon, a darts marathon and a bowling marathon. You can support the ARCA team by donating at www.justgiving.com/teams/arcacharityweek2017

A number of ARCA and ATaC (Asbestos Testing and Consultancy Association) members are also planning activities such as bike rides (up to 91 miles), abseiling in the Peak District, taking part in Wild Warrior muddy fun run and a Tough Mudder, a sky dive, along with raffles, bake sales and dress down days.

www.arca.org.uk/charities

ARCA – the Asbestos Removal Contractors Association – will be hosting its charity week again this year and Mesothelioma UK is very grateful to be one of its chosen charities. The Association’s members raised £22,000 for us last year.

ARCA Charity Week 11-15 Sept 2017

Patient and Carer Day 2017

Save the date! We will be hosting the 12th annual Patient and Carer Day for people with mesothelioma

and their families, friends and carers. It’s a day of learning,

sharing experiences and meeting others in similar situations.

When: Friday 13 October 2017Where: The Lensbury,

Broom Road, Teddington, TW11 9NU

Guest speakers will include oncology consultants, clinical

nurse specialists, researchers and support group founders.

If you’d like to find out more about the day please

contact Jill Lemon on 0800 169 2409 or email

[email protected]


In Leicester, Mesothelioma UK commemorated the day with a service of reflection and hope at Leicester Cathedral, attended by more than 100 people. The service began with the Reverend Mark Burleigh, Master of Ceremonies, introducing and welcoming the Lord Lieutenant, Lady Jennifer Gretton and asked her to lead others to place their doves on the tree of reflection.

Professor Mick Peake gave a national update on what is happening in the mesothelioma community. He spoke of the vital work that is taking place at Mesothelioma UK and about how important it is for mesothelioma to have a national audit to capture all mesothelioma data. He also spoke about the pioneering work in research and trials that Professor Dean Fennell is currently leading and reported that Leicester is both a Trial and Thoracic Centre of Excellence for mesothelioma.

Dr Sara Busarca, Clinical Oncologist, spoke on behalf of Professor Dean Fennell giving an overview of clinical trials currently taking place both locally and nationally and the importance of future trials to find the best treatment for patients, she spoke of immunology and the progress they are making which gives us all hope for curative treatments in the future.

Linda Lakin, a mesothelioma patient from Leicester then gave a very emotive talk about overcoming the challenges of living with mesothelioma.

Other speakers were Mr Apo Nakas, cardiothoracic surgeon at University Hospitals Leicester and our Director of Services, Liz Darlison.

The service was followed by a symbolic dove release and a strawberry tea. Mesothelioma UK would like thank the cathedral for supporting and hosting Action Mesothelioma Day and to the White Rose Café who kindly served the tea and cake to all attending in support of Action Mesothelioma Day.

Bristol and Beyond Asbestos Family Support (BBAFS) members gathered together at Bristol harbourside to mark the day. The event was attended by over 70 members.

Patients and families assembled at the M-Shed in Bristol and after a catch up over tea, coffee and cake at the café, the members went outside to the harbourside. Rob Thompson, a longstanding member of BBAFS shared a few words to remember those who we have sadly lost to the disease and to celebrate the strength and bravery of those currently suffering. Then there was a beautiful dove release to signify hope for the future for all members.

Anglia Asbestos Diseases Support Group (AADSG) saw 250 people attending the Action Mesothelioma Day special service in St. Edmundsbury Cathedral. The theme of the eucharist was reflection and hope and it centred on mesothelioma and asbestos-related diseases.

The Dean of St. Edmundsbury featured mesothelioma in her sermon and reflected on her own personal experiences of this terrible disease. AADSG members, patients, carers, sponsors and volunteers attended from all parts of the region. Young choristers from New Haven Cathedral, Connecticut, U.S.,

were amongst the congregation and AADSG patients and carers formed the offertory procession. The event was filmed and is available on the AADSG Facebook page.

Following the service, refreshments were served in the refectory followed by a symbolic release of 12 white doves representing 12 of our patients who we lost during the last year. The service was followed by a strawberry and cream tea in the ancient Cloister Garth and a guided tour of the cathedral and abbey ruins, and the ornamental gardens.

In Kent and Medway, Brachers were proud to sponsor the first ever Action Mesothelioma Day at the Chatham dockyard church, in partnership with Alan McKenna of Kent University. The event aimed to honour the memory of the thousands who have tragically died from mesothelioma, highlight the treatments available for mesothelioma sufferers and raise awareness of entitlement to compensation, and the need to act to prevent a new generation of mesothelioma victims.

The event opened with Medway’s Deputy Mayor releasing doves, followed by presentations from several speakers. Prof. Anne Bowcok of Imperial College London talked about their latest research into immunotherapy for mesothelioma. Dr Helen McGee, consultant in palliative care at Hospice in the Weald, shared the practical advice and support hospices give to make life and death for mesothelioma sufferers more comfortable. MacMillan Lung Cancer Nurse, Beverley Brawn, advised about the help and treatments that local hospitals can provide to mesothelioma sufferers and John Reeves from the NUT talked about the current dangers from old asbestos in over 80% of our schools. Brachers’ Jeremy Horton gave an overview of the law of compensation for mesothelioma victims, highlighting current legal issues with low exposure asbestos claims, especially in our schools.

Over 15 events took place up and down the country at the beginning of July to mark Action Mesothelioma Day - an annual day to raise awareness and pay tribute to people suffering with mesothelioma.

Action Mesothelioma Day

Liz Darlison, Director of Services for Mesothelioma UK, commented:

“While the numbers released by the HSE are high, we are here to provide both care and support for patients and funds for research which will hopefully identify new treatments.

“There are many clinical trials taking place up and down the country, some of which are having great successes in improving prognosis for patients.

“We are well on our way to providing a comprehensive team of clinical nurse specialists to cover the whole of the UK. We currently fund 13 nurses around the country, including ones in the high incidence areas such as the North East, Portsmouth, Plymouth and Scotland.

“We aim to increase the number of nurses to 28 over the next 5 years to support the NHS to drive up standards and ensure patients have access to world class treatment, trials and care.”

There were 2,542 mesothelioma deaths in 2015 (2,519 in 2014) of which 407 were among women and 2,135 were among men.The HSE analysed regional figures for the period 1981 to 2015 based on 45,527 male and 8,054 female deaths. For males, the highest rates for the period as a whole were seen in the North East, South East and Scotland, and for females, the North East, East of England and London.

The geographical areas with the highest male mesothelioma death rates and in order of rank within GB were: • Barrow-in-Furness (262 deaths, rank 1) • West Dunbartonshire (275 deaths, rank 2) • North Tyneside (491 deaths, rank 3) • South Tyneside (364 deaths, rank 4) • Portsmouth (395 deaths, rank 5) • Plymouth (534 deaths, rank 6) • followed by Medway, Hartlepool,

Southampton and Eastleigh.

The geographical areas with the highest female mesothelioma death rates and in order of rank within GB were:

• Barking & Dagenham (82 deaths, rank 1) • Sunderland (144 deaths, rank 2)• Newham (68 deaths, rank 3) • West Dunbartonshire (38 deaths, rank 4) • Barrow-in-Furness (27 deaths, rank 5) • Leeds (232 deaths, rank 6)• followed by Blackburn, Newcastle upon

Tyne, Basildon and Medway.

The HSE figures are based on the last area of residence of the deceased. The long latency period of mesothelioma means that individuals may have lived elsewhere when they were exposed to asbestos and moved areas before the onset of the disease.

The areas are ranked using Standardised Mortality Ratios (SMRs) which compare the mesothelioma mortality rate in a particular area with the mesothelioma mortality rate for GB.

The latest projections suggest there will continue to be around 2,500 deaths per year for the rest of this current decade before annual numbers begin to decline.

http://press.hse.gov.uk/2017/hse-releases-annual-workplace-fatality-figures/

Top six regions in Great Britain ranked in order of mesothelioma deathsThe Health and Safety Executive (HSE) has released its annual figures for the number of people known to have died from mesothelioma. In 2015, Barrow-in-Furness, West Dunbartonshire, North Tyneside, Barking and Dagenham and Sunderland were among the areas highest ranked in Great Britain (GB) for mesothelioma mortality rates.

In Berkshire, the Berkshire Asbestos Support Group (BASG) were delighted to welcome newly appointed MP for Reading East, Matt Rodda, to chair the annual Action Mesothelioma Day event. This year it took place at the Crowne Plaza Hotel in Reading on Friday 7 July 2017.

Dr Christopher Davies, Consultant Respiratory Physician at the Royal Berkshire Hospital, spoke of his particular interest in pleural disease and lung cancer.

Deirdre Smith, a local businesswoman whose father died from mesothelioma, gave a heartfelt and most moving talk about her father’s illness and how his mesothelioma had impacted the life of her family.

The final speaker was Amy Kerr, a research nurse with a special interest in mesothelioma. Amy has recently been awarded a grant from Mesothelioma UK and Pat Stone Mesothelioma Support to conduct a study into a non-invasive method of diagnosis of mesothelioma using Structured Light Plethysmography (SLP).

The speeches were followed by a dove release that took place on the balcony overlooking the River Thames, and a minute’s silence to remember all those who have died. It was very moving to hear the stories and hugely encouraging that there are significant number of trials and advances being made in medical research, in an effort to find a cure for mesothelioma. It is hoped that the day achieved its objective which is to continue to raise awareness of mesothelioma.

Thank you to everyone who took the time to organise or attend one of the events. Action Mesothelioma Day is important for honouring those who are living with the disease, remembering those who have died from it and also for raising awareness of it among others.


ASSESS is an observational study collecting data on demographics, symptoms and biomarkers in people with mesothelioma, to provide a resource for future trials.

Pain is a common symptom in malignant pleural mesothelioma (MPM) and can be difficult to control because it doesn’t respond well to standard painkillers.

ASSES-meso clinical trial Update from International Ban Asbestos Secretariat (IBAS)

SYSTEMS-2: A randomised clinical trial of radiotherapy for pain control in malignant pleural mesotheliomaBy Dr Miranda Ashton, Clinical Research Fellow, University of Glasgow

There is a lack of longitudinal data in mesothelioma. At present, little is known about symptom progression in mesothelioma, and whether symptoms relate to clinical outcomes.

Another important area for mesothelioma research is prognostic biomarkers. An accurate biomarker could be used in clinical practice to assess individual patients responses to treatment and overall disease stability. In research, biomarkers are helpful surrogates for measuring the efficacy of novel treatments.

A final issue in mesothelioma research is recruitment into trials. Historically trials have struggled to recruit to target and some have been closed down due to poor enrolment.

ASSESS-meso aims to address these issues. By establishing a cohort of patients, who are followed up from diagnosis until death, with regular recording of patient-reported outcome measures, quality of life questionnaires and collection of biological samples, we will be able to describe the natural history of the disease, document changes in symptomatology, and explore factors associated with survival. Furthermore, the cohort will provide a resource from which TwiCs can be undertaken, with potential benefits for research efficiency and equity. (TwiC is trial design which uses existing cohorts of patients to recruit to trials).

Aims & objectivesThe aims of ASSESS-meso are:

• To collect longitudinal data on patients with mesothelioma to provide information on the natural history of the disease and allow comparison of outcomes

• To create a bank of biological samples for the investigation of novel biomarkers and exploration of biochemical factors that may influence outcome

• To provide a resource from which to conduct trials within the cohort.

Inclusion criteriaTo be eligible to participate in the cohort, patients must meet all of the following criteria:

• Histological, cytological or clinico-pathological diagnosis of MPM, confirmed at MDT

• Willing and able to comply with study follow up assessments (including at least 1 appointment at a study recruiting centre if identified at a PIC)

• Has capacity, as defined by the 2005 Mental Capacity Act

Exclusion criteria To be eligible for the cohort, none of the following criteria should apply:

• Age <18 years old

• Unable to give written informed consent

• Declines ongoing hospital follow up

Recruitment targetWe are aiming to recruit 700 participants over a 10 year period.

Study schedulePatients will be approached in clinic and those who enrol will undergo baseline assessment at that time.

Subsequent study assessments will be undertaken at participants’ routine clinic appointments, based on a flexible schedule, with data collection every three months as a minimum.

Consent for TwiCsPatients enrolled into ASSESS-meso can choose to be considered for trials through the TwiC design, if they wish.

For more information about ASSESS-meso and/or TwiCs please email [email protected].

Laurie Kazan-Allen, editor of IBAS, summarises the latest asbestos campaigning updates from around the world.

World Health OrganizationOn June 13, 2017, the World Health Organization released its Asbestos Fact Sheet 4 which concluded that banning asbestos saved money as well as lives! Related leaflets are available on the WHO website:

Fact Sheet Elimination of asbestos related diseases www.euro.who.int /__data/assets/pdf_file/0013/341131 /Fact-Sheet-4-Elimination-of- Asbestos-Related-Diseases.pdf

Asbestos. Economic Assessment of Bans and Declining Production and Consumption www.euro.who.int/__data/assets /pdf_file/0009/341757/Asbestos _EN_WEB_reduced.pdf?ua=1

Please also see the IBAS blog on this subject: Banning Asbestos: Saves Money and Lives! www.ibasecretariat.org/lka-blog.php#a126

United NationsOn June 23, 2017, our colleague Fernanda Giannasi presented evidence to a rapporteur of the United Nations at a meeting in Brussels on the hazards faced by activists working in the field of business and human rights. Fernanda testified on the death threats, attacks and intimidation

she has faced in Brazil, during her campaign for asbestos justice and a national asbestos ban.

Asbestos bans and restrictionsAs a result of information recently received we have been able to update the IBAS lists of asbestos ban and restrictions.

The list can be found at www.ibasecretariat.org/alpha_ban_list.php

A chronological list of national asbestos bans and restrictions can be found at www.ibasecretariat.org/chron_ban_list.php

National developmentsIn July 2017, UK asbestos victims groups welcomed a delegation from Japan to events in Manchester, Birmingham, Sheffield, Liverpool and Derby. More information about the Historic Mission: Global Unity of Asbestos Victims can be found at www.ibasecretariat.org/press-release-unity-of-asbestos-victims-jun-19-2017.pdf

On 8 June 2017, an asbestos conference in Bologna, Italy took place which highlighted the ongoing mobilisation of asbestos victims in Italy, Brazil and all over the world. Read more about the Mobilisation of Italian Asbestos Victims at www.ibasecretariat.org/lka-mobilization-of-italian-asbestos-victims.php

Radiotherapy has been used for many years to help manage pain in these patients and is recommended by the British Thoracic Society as a component of standard care in this disease. Nevertheless, there is very little evidence to suggest how much radiotherapy should be given, what dose should be used at each treatment or how it should be delivered. There has also been very little work done to assess how effective it is.

The SYSTEMS study, published in 2015 was the first prospective clinical trial to use validated assessment tools to measure pain scores in response to radiotherapy. This multicentre study recruited 40 patients over 18 months and concluded that a standard dose of radiotherapy (20 gray delivered in 5 treatments over 1 week) was associated with meaningful improvements in pain for about one third of patients. Importantly, very few side effects were reported.

These results have underpinned the development and launch of SYSTEMS-2: a randomised, phase II trial of radiotherapy dose escalation for pain control in MPM. This clinical trial aims to establish whether a higher dose of radiotherapy (36 gray in 6 treatments over 2 weeks) will be more effective for pain control than the standard dose, given in SYSTEMS. Whilst recent advances in radiotherapy technology have made it possible to safely give higher doses, we need to do a clinical trial to make sure that there is no increase in side effects. A total of 112 patients will be randomly allocated to receive either the standard dose over 5 days or the higher dose over 2 weeks. Pain scores will be measured using validated assessment tools, before the radiotherapy and 5 weeks after the treatment. Patients will also be reviewed at weeks 9 and 26, where in addition to assessing pain, we will also look for any changes in tumour size (using a CT scan), side effects, overall survival and quality of life.

Trust awarded £1.3 million for lung cancer research

In the UK over 2,000 patients are diagnosed each year with pleural mesothelioma, with deaths increasing every year and estimated to peak in 2020. So far, most treatments have been ineffective: the current use of chemotherapy is associated with patients only living for an additional three months. As a result, surgery remains an important consideration to increase the length of, and improve the quality of, life for patients. After the successful pilot study, funded by Cancer Research UK, the research grant for the full MARS 2 trial was awarded by the NIHR which funds high quality research ‘from bench to bedside’. Currently, the MARS 2 project is the only trial of its kind in the world looking at whether radical surgery has benefits for mesothelioma patients. The UK is the only country in the world to have previously conducted randomised trials of surgery for mesothelioma, which influenced international healthcare practitioners to reconsider procedures proven to be ineffective. Mr Lim, who will be leading the trials, said: “The MARS 2 investigators will investigate whether ‘pleurectomy decortication’, the most common surgical procedure currently offered to patients, combined with chemotherapy, will improve length or quality of life compared to chemotherapy alone, which is the current standard of care.” Apart from addressing the important question of whether surgery and chemotherapy combined versus chemotherapy alone in early mesothelioma is better for patients, MARS 2 will also contribute to other areas of knowledge, including trial recruitment and cost-effectiveness. Dr Jenny Rivers, associate director for research at the Trust, said: “We are delighted to receive ongoing support for this important work. The trust that NIHR puts in our researchers to deliver this programme is testament to our success in improving patient outcomes in this area and demonstrates the strength of our world-leading expertise.” The trial will be led by Royal Brompton & Harefield NHS Foundation Trust with collaborators at 14 other sites. The trial will be managed by the Bristol Clinical Trials and Evaluation Unit. If you would like to find out more about this study please email us at [email protected]

In March 2017, asbestos victims from Belgium, Japan, France, Italy, the UK and Spain took part in a conference, workshop and demonstration in Belgium to support the family of a mesothelioma victim as they waited for a court verdict in the country’s first case against Eternit. The appeal court ruled that the asbestos company’s negligence had caused the avoidable death of Françoise Vannoorbeek-Jonckheere! On 20 June 2017, the company announced that it would not appeal this judgment to the Court of Cassation (Supreme Court). Victory in Belgium!

Read more about this historic victory at www.ibasecretariat.org/lka-asbestos-victory-in-belgium.php

As always, we remain interested in any news, developments or initiatives from your part of the world. We look forward to hearing from you.

To be eligible for the study patients must have:

• Histological or MDT diagnosis of MPM

• Worst pain score ≥4/10 after analgesia optimisation

• ECOG performance status 0-2

• Contrast enhanced CT scan within 8 weeks of starting radiotherapy

• Life expectancy of >12 weeks

• Radiotherapy plan compatible with the dose escalation arm prior to randomisation

SYSTEMS-2 was launched in Glasgow in August 2016 and has subsequently opened to recruitment at The University Hospital Southampton, Forth Valley Royal Hospital, Weston Park Hospital Sheffield and The Royal Marsden. There are currently 17 patients registered to the study and 16 patients randomised. We anticipate opening at a total of 15-20 sites around the UK, including Belfast, Manchester, Edinburgh, Cardiff, Leeds, Aberdeen, Cheltenham, Derby and Kent.

For updates on trial recruitment and participating sites, as well as further information for clinicians and patients please visit our webpage www.systems-2.co.uk or email [email protected]

Mr Eric Lim, consultant thoracic surgeon at Royal Brompton & Harefield NHS Foundation Trust, has been awarded £1.3 million, the largest National Institute for Health Research (NIHR) grant awarded to the Trust this year, for a study looking at mesothelioma.

8 Mesothelioma UK Newsletter - Autumn Issue 2017

The day began with Vivienne Swain, who was a resident in Rochdale, giving a personal account of her asbestos exposure, experiences and treatment history. During the morning session speakers included Laurie Kazan-Allen talking about Mesothelioma: The British Tragedy, Global Disaster, and Jason Addy who reported on the Turner and Newall Story. Graham Dring informed the audience about Asbestos Support Groups in the UK, history and campaigns and John McClean advised on the UK Asbestos in Schools campaign.

In the afternoon I was able to advise on Mesothelioma: Diagnosis, Treatment, and Clinical Trials for Patients. Greg DeLeuil spoke about Australia’s Asbestos Legacy. Sugio Andeva and other colleagues from Spain and Belgium discussed asbestos issues and campaigns in

Japan, France, Belgium, and Spain. Patrick Walsh explained compensation for asbestos sufferers in the UK.

The study day ended with an amazingly informative visit to the Turner and Newall factory site in Rochdale, arguably the birthplace of the world’s modern asbestos industry. Jason Addy and other local residents /Spodden Valley campaigners gave a very visual account and historic overview of the Turner Newall now derelict factory site and the legacy of contamination.

During the day Jason said: “The history and legacy of past products, corporate decisions made and waste dumping on the Turner Brothers Asbestos site should never be forgotten, lest history repeats itself.”

Graham Dring reflected on the visit saying that “our international guests wanted to see the former Turner Brothers Asbestos Site for themselves. To them this is ‘asbestos ground zero’, where the asbestos industry, deaths and questionable tactics to promote the deadly mineral first began.”

During the day the heartfelt stories from international advocates highlighted the worldwide problem of mesothelioma and other asbestos-related diseases. Thankfully the interpreters were at hand to enable us to understand concerns and issues.

The Japanese visitors were also able to take part in Action Mesothelioma Day events in Birmingham, Manchester, Sheffield, Derby and Manchester. So not only was this an excellent study day and a delight to meet the international delegates, it was a truly memorable week!

Excitingly, as we move towards the end of 2017 we will have five more. Two of these posts will be based in London. One at Guys and St Thomas’s NHS Trust and one at St Bartholomew’s NHS Trust. The other three posts will be based in Kent, Southampton and Liverpool.

The Southampton post will also have a responsibility towards supporting veterans nationally and the service will also be closely linked to a new Mesothelioma UK Welfare Rights and Benefits Advisor.

The expansion of the team will mean that, nationally, there will be more equity in terms of access to a mesothelioma specialist nurse. This will assist with supporting the NHS to drive up standards and improve access to world class treatment, trials and care.

Our nurses are pivotal to improving access to information locally and nationally through the written information we provide, via the website and our freephone helpline. The nurses also endeavour to make sure patients are discussed at multidisciplinary team meetings and that patients and carers have access to a support group.

Our ambition does not stop at 18 nurses though and to reach truly equitable access to a mesothelioma CNSs across the UK we feel we need to increase to 28/30 nurses as outlined in the Mesothelioma UK 5 year strategy. These are ambitious plans which is why we are always working to raise the profile of not only Mesothelioma UK, but the disease itself. We rely totally on donations, fundraising, sponsorship and legacies and will work hard to ensure every patient in the UK has access to world class treatment and care.

“Being a Meso UK nurse to me is an honour and privilege, and I have felt incredibly humbled by the reception of the Southwest and the support that they have given me. I never underestimate, or take for granted, the gift of being allowed to accompany those afflicted with asbestos related disease as they walk their pathway, and equally, I never fail to be amazed at the support we, as a team, offer each other. It is, simply, the best job on the planet,” said Christine Jones, CNS.

An international asbestos study day was arranged by Graham Dring and his colleagues from Greater Manchester Asbestos Victims Support Group on 5 August 2017. The study day was held at the Slater and Gordon offices In Manchester and brought together experts and campaigners from Japan, Australia, France, Italy, Spain, Belgium and the UK.

The Mesothelioma UK Clinical Nurse Specialists (CNSs) are going from strength to strength. Currently we have fourteen nurses based at Leicester Portsmouth, Manchester, Newcastle, Sheffield, Oxford, Glasgow, Wales Yorkshire, Plymouth and Cambridge and are supported by two national CNS Team Leaders, Anne Moylan and Lorraine Creech.

International asbestos study dayBy Lorraine Creech, Mesothelioma UK CNS Team Leader

Mesothelioma UK nurses – 14 and counting

Mesothelioma UK Newsletter - Autumn Issue 2017 9

Chrysotile still not on hazardous substances listBy David Trigg, Chair. D. A. S. T. (Derbyshire Asbestos victims Support Team)

Results of Bayer clinical trial

These CoP meetings take place every two years. The Annex III listing is NOT a list of substances/products that are banned, it is a list for the notification to people likely to use/handle the substances/products in a manufacturing/importing country, that are carcinogenic. There are many countries in the world that do not have the protection that we have here in the UK with the ‘skull and cross bone’ symbol on the labelling of dangerous products.

It is alarming that 7 votes, out of 157 - representing over 190 nations - can mean that a proposal can, and will, fall. The seven countries were Belarus, India, Kazakhstan, Kyrgyzstan, Russia, Syria and Zimbabwe.

It is well documented that chrysotile asbestos is a carcinogen, and that mesothelioma can develop from the inhalation of chrysotile fibres. It is also fact that deaths worldwide from the exposure to asbestos fibres is increasing and that by not including chrysotile on the Annex III list, the death toll will continue to grow.

The chrysotile industry involves a very powerful lobbying group including so-called trade unions and they have government financing. It is also noteworthy that they are not afraid to resort to illegal and unethical tactics as noted by the ‘industrial espionage’ story, revealed late last year. One has to remember that the CoP meetings are only to have hazardous substances listed as such, not to have them banned.

It is now accepted by many anti-asbestos activists that the route via the CoP meetings to get chrysotile listed, globally, as a carcinogen is now closed. We have to look at other avenues to achieve our aim of banning asbestos totally. This is a difficult fight to win, but we cannot sit back and watch as the asbestos industry continues to trade its lethal product to the developing world. We have to do something about it, now.

As previously mentioned above, the fact that one vote can stop any proposal from being listed, (voting by consensus system), is the major obstacle to getting chrysotile listed. It is of equal concern that the conference did not vote on an amendment put forward by a group of African nations that the consensus voting system be replaced by a ¾ majority system.

We note that a working group has been set up to ‘identify a set of prioritised recommendations for enhancing the effectiveness of the Convention, and this to report back identifying further steps for consideration at the next CoP meeting’. Activists like ourselves are concerned about the makeup of this group and of how the recommendations in the report will be decided upon. The chrysotile supporting counties have asked that they have a place on the ‘group’, so what hope of the recommendation’s approval if subject to the consensus voting process?

The opinions above are my own, and not necessarily the opinions of DAST, the Asbestos Victims Support Groups Forum UK (AVSGF-UK), or Mesothelioma UK.

The safety and tolerability of anetumab ravtansine were consistent with earlier clinical findings. Detailed study results are expected to be presented at an upcoming medical meeting.

The trial randomised 248 patients in a 2:1 ratio to receive either anetumab ravtansine (6.5 mg/

kg intravenously every three weeks) or vinorelbine (30 mg/m2 intravenously weekly).

Bayer would like to thank the patients and their caregivers, as well as the study investigators for their continued support, participation and contributions to study.

3 May 2017 was a sad day for anti-asbestos campaigners around the world. The Rotterdam Convention CoP8 (Conference of Parties) eighth meeting, taking place in Geneva, yet again voted to leave chrysotile asbestos off the list of hazardous substances to be traded only with prior consent.

The phase II clinical trial (NCT02610140) was a randomised, open-label, active-controlled, multicentre superiority study, investigating anetumab ravtansine as second line treatment in patients with advanced or metastatic mesothelin-positive malignant pleural mesothelioma (MPM), whose disease had progressed after treatment with first-line platinum/pemetrexed-based chemotherapy. The trial did not meet its primary endpoint of progression free survival.

News from the National Centre for Mesothelioma ResearchBy Professor Bill Cookson, NCMR Director

Since then, there have been some exciting developments at the Centre and our researchers are currently gearing up for the next academic year starting in October.

Over the course of NCMR’s first year we have appointed three postdoctoral researchers, a centre manager and three PhD students. The current research focus at the Centre is on early diagnosis of mesothelioma.

Other notable achievements include our first collaborators’ meeting – with participants from Leicester (the MRC Toxicology Unit and Mesothelioma UK), Cambridge (Mesobank) and Glasgow (Institute of Cancer Sciences) – and an NCMR Scientific Advisory Board meeting in which we presented our research plans to the Advisory Board to receive input and feedback from leading scientific experts as well as patient, union and charity representatives.

We are currently preparing for a Macmillan Coffee Morning to be held on 29 September at the Royal Brompton Campus of Imperial College. The aim is to raise money for Macmillan Cancer Support, to promote the work done at NCMR and to raise mesothelioma awareness.

The National Centre for Mesothelioma Research (NCMR) at Imperial College London’s National Heart and Lung Institute (NHLI) was founded last year and introduced to the Mesothelioma UK community last June.

Tom Hammond – Hair Shave in memory of Dermott Dougan

“As some of you may know, my grandad was diagnosed in September 2016 with Mesothelioma - a rare cancer

caused by exposure to asbestos at work. The average life expectancy for this type of cancer is around 12 months from diagnosis. Sadly, my grandad died after only five months. I would like to raise awareness of this type of cancer and fundraise for the charity Mesothelioma UK who provide lots of help and support to families when they are faced with this horrible disease. I decided to do a sponsored head shave to raise money for Mesothelioma UK and I have been growing my hair so that I can donate it to make a wig for someone who has lost their hair due to cancer. Thanks for reading my story Tom”. Tom raised £1,538.75.


Mesothelioma UK Charitable Trust 1126083

Fundraising News

Mesothelioma UK • Freephone 0800 169 2409 • www.mesothelioma.uk.com Details of all sponsorship, donations, fundraising and successful grant applications are posted on our website

You have been busier than ever doing all sorts of weird and wonderful things to raise funds and awareness as you will see when you read what our supporters have been up to. Their stories will make you laugh, cry, inspire and lift you all at the same time. There are some fantastic people out there and we are very privileged and thankful that they have chosen to support the important work we do for those living with or touched by mesothelioma and don’t forget if you want to do something to help then please do get in touch, we can help support whatever

fundraising you decide to do, whether it be a small or large event, raising awareness about the dangers of asbestos is so important and we must continue to protect the next generation.

Well another year and our Muffins for Meso in May has been fantastic and a huge thank you to all those who took part. Your Muffins were amazing and again has made our judging very difficult but we have chosen three very worthy winners. The Best Dressed Muffins, The Most Unusual Muffins, The Best Recipe, which is absolutely fabulous, so get those recipes written down for next year, the wilder and more wonderful the better.

‘Grow a Mo or Wear a Mo for Meso in Movember!’

This year is just zooming by and just to remind our wonderful supporters that sadly Autumn is just round the corner and brings with it Meso UK’s ‘Grow or Wear a Mo for Meso in Movember. Please come and join us in this fun event which helps to raise so much needed awareness especially in the workplace and at home, asbestos lurks in places you wouldn’t

believe. You can take part by growing a Moustache or design and make your very own. Anyone can join in the fun, doesn’t matter what age you are you can take part.

For the boys: November 1st start with a clean shaven face to grow your Mo for 1 month. Send in your before and after pictures. For the girls: why not host a ‘Wear a Mo Coffee Morning’ or a ‘Mo Bake Off’ or organise a ‘Mo for Meso Walk’ or simply get together and have some fun? Don’t forget to encourage the children to take part in the fun too! Why not ask their teacher if they can have a sponsored ‘Design and Wear a Mo Day’ every little helps to raise awareness about the dangers of asbestos especially in schools.

The most important thing is to have fun…Get your friends to support you and enter our competition for the longest, bushiest and most original Mo. Any one can enter, any age!

To get your sponsor forms and party pack please contact [email protected] or contact our freephone helpline 0800 169 2409.

Well what is happening to our crazy summer weather… one minute we are on the beach in bikinis and then we have our heating and winter warmers back on but has the weather deterred our fabulous fundraisers you may ask? No it certainly hasn’t…

Jill Lemon

Laura Garland – Colour Run

“I am fundraising in memory of my Grandad Terence Ball, who passed away

in June 2015 from mesothelioma. The Mesothelioma Charitable Trust is a small and not well known charity that provided support and help over the two years from diagnosis. I’ll be completing a 5k colour run on the 1st May in Lincoln, to help raise money and awareness. Donations are much appreciated, no matter how little they are. All donations will all go towards The Mesothelioma Charitable Trust.” Laura raised an amazing £821.75.Fundraising & Marketing Manager

Rob Stiles

Despite undergoing pleurectomy surgery which is believed to have prolonged his life, Rob’s condition gradually deteriorated and he died on 3rd January this year. Rob was someone who spent his life working to provide a better life

for his family and the onset of his illness meant that he wasn’t able to enjoy a richly deserved retirement. He died aged 59 – more than 40 years after it is thought he was exposed to asbestos as an apprentice plant mechanic. Rob was fortunate to have been married to his wife Maggie, a registered nurse for more than 35 years. She helped Rob during his battle as she could explain the details and implications of his treatment, monitor his dietary intake and general health and generally make sure that other than a new set of lungs he had everything he needed.

Unfortunately, not all mesothelioma sufferers and their families have direct access to the level of care and support that Rob received, and that’s where Mesothelioma UK can fill a void in the lives of sufferers. Much of this support can only be provided if adequate funding is received, which serves to highlight the importance of the numerous charitable donations received by the trust each year.In light of this, Rob’s eldest son Mark recently completed a 10km run in his home Town of Thame, Oxfordshire to raise money for Mesothelioma UK:

“I’ve never been much of a runner and am not really built for it; my younger brother Greg was always the athlete in the family and would finish a 10k run with barely a bead of sweat on him! My dads plight showed me that I shouldn’t take my health for granted though, so I decided to try and lead a more active lifestyle. There’s a history of heart disease and diabetes in my family, so it’s best that I try a limit the risk of health problems later in life while I’m still young enough to do so.

I’ve been running on and off for a couple of years now so I decided that this year I’d have a go at my local 10k race and raise some money for charity in the process. If you’d made such a suggestion to me 10 years ago I’d have laughed you out of the room; it’s funny how life events change your perspective on things. I decided that I would aim to finish in under an hour, a target which I was not helped in achieving by 3 weeks of trips abroad involving some detrimental eating & drinking and limited training before the big day! My fiancée Beth agreed to support me and do the run as well with almost no prior training.

We both finished and I got around in a time of 59 minutes and 41 seconds. The total of our fundraising efforts, including Gift Aid, is £853.09.”

It’s the news that nobody wants to hear; being informed that you’re suffering from a life limiting illness for which there is not an effective cure. Unfortunately, it’s a daily occurrence and in the spring of 2015 Rob Stiles was told he had mesothelioma.

Angela McGowan – Liverpool Rock ’n’ Roll Marathon

“Just over a year ago, a friend was diagnosed with Mesothelioma at 40! Mesothelioma is a asbestos related cancer of the chest. His fight against this horrendous disease has been hard fought (lung removal followed by Chemo) and he is a true Meso Warrior now living with Mesothelioma.

After diagnosis, he blogged about how little awareness there is for Mesothelioma and how it receives a disproportionate amount of funding for research and support for those impacted by it. Mesothelioma UK are currently fundraising for Specialist Mesothelioma Nurses and I have chosen this as the charity to benefit from my run. The support given to my friend and his family through Mesothelioma UK has been exceptional and it is only fair the every person affected by this horrible disease is afforded the same support”.

Update: Well I did it - 2hrs 42 min - slightly outside target but I did it! Thank you for your amazing donations - along with a contribution from work and gift aid, at least £650 will be winging its way to Mesothelioma UK. That makes the pain my feet are feeling right now so worth it. Thank you again :-)

Don’t forget to order your Mesothelioma UK Christmas Cards.

We have 5 new designs. It is so easy to do, you can order and

pay for them over the phone by ringing 0800 169 2409 or email your order to:

[email protected]

Katie and Helen Hetherington #Missionmarathon #Makedadproud

“When my Dad was diagnosed with Mesothelioma in April 2012, I’d never even heard of it. Safe to say, my world as I knew it, completely changed forever from that point. We were incredibly lucky to live near Weston Park Cancer Hospital in Sheffield - my dad received fantastic care and for the first 6 months, responded well to treatment. Sadly the cancer became very aggressive in December 2012 and my wonderful Dad passed away on 28th April 2013 at home, age 57. My Dad was a keen runner, having done many 10ks and Half Marathons. We ran the Sheffield Half Marathon together in 2011 - I clearly slowed him down, but he was too polite to tell me! He always told me he couldn’t understand anyone who wanted to run a marathon and that is was a very silly idea!

Since my Dad passed away, although very active and sporty, I had completely lost the enthusiasm for running. In August 2016, I ran a 5k in memory of a very special little lady, with Helen and her family - raising money for SANDS. The bug came back and I had the brilliant idea to challenge myself to run a marathon. Soon after, Helen said she wanted to run as well and before we knew it, or could change our minds, we’d signed up to the Edinburgh Marathon in May 2017. Our aim was never to break records, it was to get round the course, raising as much money as possible for Mesothelioma UK. Although the money was important, it was also about raising awareness for this terminal cancer - I’d never heard of it, so I was pretty sure many others wouldn’t have either. We were so well supported throughout our training from our friends and families but also found it very hard to fit it all in around normal work and life! Race day came and our training, alongside pure determination and fantastic crowd and fellow runners support, got us round and we were over the moon to complete it in under 6 hours. At about mile 11, Helen turned to me and said, “your Dad was right, this is very silly”. Looking back, climbing Ben Nevis the week before the marathon probably didn’t give us the best preparation, but Helen and I love a challenge ;-)

Our target was to get £500 so we were completely over the moon when we raised £1,327.44 plus more from gift aid. Will we do another marathon again? It’s very unlikely - half marathons at a push! But we are so proud that we achieved our goal and raised such a massive amount of money for a fabulous and much needed charity. Katie and Helen xx


Helen, Dave and Joe’s – Big Bike Ride

”My name is Joe and I am 18 months old, I went on a BIG bike ride with my Mummy and Daddy for my lovely Gangan

because he got poorly last year and isn’t with us anymore, so in his memory we cycled 37 miles around the mountains of Stirlingshire to raise awareness and funds for our chosen charity”.

“My Gangan worked for the NHS in 1969-77 in Yorkshire as an engineer, he was supervising the removal of asbestos in the boiler rooms, even though the maintenance men actually removing the asbestos had paper masks my Gangan had nothing! In 1968 the hospital trust wrote their own risk assessment policy on asbestos, none of their procedures were known about by the work force to be adhered to and as a result, to date, along with my Gangan 4 other engineers and one cleaner have died either of asbestosis or mesothelioma”.

“My Gangan was 73 and my hero, Sadly he died the day after his 73rd birthday, he was an engineer to the end, always helping people fix things, he loved a problem to solve, war documentaries and films and fiddling around with his motorbikes and now he’s gone”.

Update from Helen and Dave: “All finished!!! Thank you soooo much from the bottom of our hearts for supporting us to raise this money in Dads name! £707.50 is a huge amount for one small boy, and the help of us two! It was a long slog of a bike ride for someone that doesn’t like hills and someone that’s towing 4 stone on wheels! Thank you again for all your support and kind messages! Love you Dad, always xx

John Davey – Ambling in August “We are trying to raise awareness of the dangers of asbestos and the risk of Mesothelioma.Smuidrite and I walked a mile and half across Bradgate Park in support of this charity which some of you will be aware I was diagnosed with earlier this year. We are supporting the charity of which two team members help to run a Luncheon Club in Leicester for those who have been treated at the Leicester Hospitals and where we along with other

mesothelioma and lung cancer patients and carers meet up once a month for lunch bringing together fellow sufferers which has been a great support for both Smuidrite and I. These monthly meetings also give me hope, ideas and I don’t feel so alone on the journey ahead. I wanted to raise £100 which I did very quickly and my hope now is to raise £1,000 I am currently just over £800.00 so if you would like to support and donate please go to my page at Just Giving and don’t forget to gift aid your donation as it increases your donation by 25%. Thank you”. https://www.justgiving.com/fundraising/john-davey3

Dawn Parker - Velothon

My dad was a carpenter so he spent decades working hard in asbestos environments with no protection - little did he know this would so quickly take his life in later years. This type of cancer lays dormant for years and then when it rears its ugly head - BANG!!! it’s too late and only palliative care can be offered. Sadly my dad passed away on the 8th December 2016 just a few months later after being diagnosed. There is not a day that goes by without being reminded of the suffering that he went through, and the lack of support and knowledge we had about this illness. But my Dad, he never complained, he just got on with it, and he was always giving us the thumbs up to say he was ok, but we knew otherwise. My dad was outgoing and loved life but sadly he did not get to enjoy retirement after working hard for so many years. There is not a lot of information or awareness about Mesothelioma so we had no idea what to expect, and my dad’s nurse just told us to make each day count - so we did.

I decided to take on the challenge of cycling 1,000 miles between April and July, and I am pleased to announce that I did it with flying colours with support from friends, family and colleagues. I have cycled to many places and up the tumble twice, the second time as part of the Velothon Wales.Throughout all of this it has taught me - life is a gift, so live in the present, eat the cake, buy the bike, book that holiday, the rainy day you are saving for may never come”.

‘I miss you every day Dad, but I know you are watching over me xxxxx’

Update: “Woohoo – 2 major achievements this week. I completed the Velothon on Sunday 86.7 miles in 6:12:57 and we have also now hit my target of £1,000 for this amazing charity. I can’t thank all of you enough for your very kind donations and the support that I have received during the last 2 ½ months to get me to this point. I’m sure my dad is raising a glass and thanking each and every one of you. xxx“ Dawn raised in total £1,287.50.

“My Dads story - My Dad Lyndon Parker has never smoked a single cigarette in his life, so we were devastated in October 2016 when he was diagnosed with Lung Cancer. After numerous tests and a biopsy it was confirmed that he had Mesothelioma. For those of you who don’t know what this is, it is asbestos poisoning, it is a cruel and devastating illness and you can imagine the shock and fear when we were also told that there is no cure.

Hanya Ratcliffe – Cotswold Challenge“Hi all, I’m taking part in The Cotswolds Challenge (100km/62 miles over 2 days!) this summer to raise funds for Mesothelioma UK. It has been more than 10 years since my dad was diagnosed with and subsequently died of mesothelioma, a cancer caused by exposure to asbestos, and it was at this time we as a family became aware of Mesothelioma UK and the valuable services and resources they provide including funding for NHS frontline

specialist nurses to help the patients and their families affected by this (as yet) incurable cancer. Please help to support them by sponsoring me to walk a silly amount of miles”. Hanya completed her challenge and raised a wonderful £760.00.

Janice Houghton-Wallis - Cycle ride for Mesothelioma UK in 2018“I have to delve into the past to recall when I regularly used to ride a bike. The primary school I attended was in the neighbouring village and I would cycle to that, coming to grief one day after new tarmac had been put on the road and I skidded on the grit grazing my chin and throat. When at secondary school I cycled the two miles to the bus stop but after passing my driving test the bike became redundant.

Many years on and I have decided to take part in a cycle time trial as part of the Tour of Ayrshire Cycling Festival 2018. The Chrono time trial is based on age / gender classifications and is a UCI qualifying event for the UCI Gran Fondo World Championships. I come under the age classification 70+ and my aim is to be placed thus qualifying to represent GB at the Championships in Italy. However, there was one main problem – I did not have a bike! My son Robbie has bought me a new road bike and a cycling friend Esther bought me a helmet so I am set up. I now have until April 2018 in which to learn to be confident on the bike, increase the levels of distance I can do and eventually try to get some speed up.

I am taking on this challenge in memory of my brother Stephen who passed away at the age of 58 in 2010 with the asbestos cancer Mesothelioma. We believe Stephen must have inhaled asbestos fibres at the age of 17 when helping his uncle build a new piggery and asbestos was being cut to roofing requirements.

Mesothelioma specialists say it only takes one fibre to be inhaled and it will lie in the lining of the lung for many years before manifesting itself in this atrocious disease. I witnessed someone I love suffer shocking, intolerable pain. Let’s work towards eliminating the cause of this disease and in the meantime more efficient treatment.

There are so many wonderful organisations looking for financial help it is almost embarrassing to be asking for your support but if you are able to back me I would be so very, very grateful. I will pedal faster with you behind me. Thank you”.


Paul Smythe - Liverpool Nightrider 100k cycle

I went round with 3 pals – representing the finest legs from Birmingham, Edinburgh and Liverpool. So I had good company and thank goodness, someone with local knowledge who knew the route. I think that

from the 350 or so starters about half were doing the 50k. We set off in waves at about 11pm from Liverpool city centre and we, the 100k bunch headed for the Birkenhead tunnel.

At the start we got a bit of a ‘lick on’ and we seemed to pass quite a few young Lycra clad types riding bikes no thicker than a steak knife. I enjoyed the thought that as we went passed they must have looked at my old bike and wondered if it was an early prototype for something that Brunel was working on. Later I realised what they were doing is something very dull called ‘pacing themselves’ – so they would still be able to walk and talk at the end. Very boring. But the story from then on was the rain – and the punctures. OMG the rain! It started at about midnight – and didn’t really stop all night. I now know there is a kind of wet which goes way beyond being merely soaked. It’s when even your toenails turn to a substance like bread and you can feel your fillings going rusty in your mouth. In the glare of headlights and lampposts just trying to see the way-marker arrows (for a specs wearer) was impossible. Someone should invent wiper blades for specs. Added to which were some big downhills - with virtually no braking in the rain. Good job most people were in bed and couldn’t hear the swearing.

Why are punctures always on the back wheel? Is it the law? When you’re at your lowest ebb, and the wind is made of needles our trusty leader had to man handle his chain and gear set to remove the rear wheel in order to replace the tube. Then just as we got going again the puncture reappeared, but now in a slower form, and for the rest of the night. More stops to re-inflate. We took our scheduled break stops – three, of about 20 mins each – quick hot drink and carbs intake. The last was at the new Alder Hay Children’s Hospital - what a fab foyer entrance hall – outstanding architecture. I love Liverpool – they’ve got great buildings. A well meaning young tech guy from the volunteer group ‘Cycle Republic’ (stationed at each of the rest areas to do running repairs) said “no

offence mate but I’ve just seen your bike in a museum.” None taken. Despite fiddling with my Sturmey Archer a few times we were never going to put in a record time. My three pals waited for me on the long uphills and the best we could do was around 7.5hrs. They did it almost an hour quicker last year but that was a perfect summer evening and no punctures.

So all things considered – see you again next year (yeah...if they move Liverpool indoors). What kept me going was your kind sponsorship. Really – I was amazed at howmany people responded, and so generously. The total (including the Gift Aid) will be over £500!! That goes to Mesothelioma UK who look after victims and families of asbestos related diseases. As you would expect, these are often construction and building industry tradesmen and labourers – a “Cinderella” sector of working people and their families who, during their working lives often lay their health and welfare on the line every day – through all weathers , to make comfortable places for us all to live and work. For their often hazardous work I believe they are unsung heroes but then Mesothelioma can strike years after the exposure to asbestos – robbing it’s victims of the restful retirement they so deserve. So sincere thanks again for all your support – it helped remind me that you believed this was a worthwhile cause too. Here’s the link once more to the Mesothelioma UK charity page on Virgin Money Giving – just in case you know someone who might like to donate, now they are sure the miles have been pedalled.” http://uk.virginmoneygiving.com/PaulSmythe. My very best regards Paul.

“Just to let you know I did it! All 100k….. In the rain, and the wind, and the punctures. Sorry - I’m a bit late with the news. Busy week – sleeping. The 100 kl Liverpool Nightrider – Sat 15th July 2017.

Annette Eglen - Walking for my lovely Dad“In April my lovely Dad died. He was 84 so it wasn’t an untimely death. He led a long and full life but what I struggle to accept is the way he died. At the age of 84 you think that your parents will most likely die of old age, in their sleep quickly and peacefully. Instead Dad died of a horrible asbestos related cancer called Mesothelioma, an industrial disease that lies dormant in the lining of the lungs and or the stomach for many years. Dad worked for BT (formerly the GPO) all his working life. In the 1960s he was a BT engineer which involved going into factories to lay and reroute telephone lines. He had to drill through floors and ceilings

which contained asbestos without any protection from asbestos fibres. Spurred on by Dad’s courage and determination from the day he was diagnosed in October last year to the day he died in April, I am now doing something positive to stop others dying in the same way as Dad did. The disease needs to be diagnosed early to give people more treatment options, there is also a need for more mesothelioma specialist nurses and multidisciplinary teams to proactively support patients and families through the traumatic stages of this disease. In time the disease will become scarcer as asbestos disappears from our lives but in the next few years it will continue to make lung cancer one of the most common cancers in the UK. During June I will be attempting to walk 500,000 steps in memory of my Dad’s determination to stay fit most of his life and to support the ‘walk all over cancer’ campaign promoted by Cancer Research UK. Please sponsor me to help change the future of mesothelioma and to also remember the many heroes and heroines like my Dad who have bravely battled this horrible, fatal disease.” Annette completed those 5000 steps and more and raised a wonderful £243.75.

Faye Edwards – Stratford Half Marathon“As most of you know, 2017 marks the 3 year anniversary since I lost my dad. It has been an unbelievable journey of emotions since 2014 and I have no doubt there are many more ups and downs to come. He passed away from a very rare and terminal, asbestos related, cancer known as Mesothelioma. Mesothelioma UK funds research into treatment for patients and care for those who are suffering and so I’d be very grateful for any donations towards this wonderful charity. Thanks everybody, Faye xx”. Faye raised a wonderful £498.75.

Nigel’s big bike days for Mesothelioma UK200mile + bike ride in support of Mesothelioma UK because of the fantastic support and inspiration. I am sure some of you know it’s been a particularly difficult 2017 for Triona and I. In November 2016 I was diagnosed with the Mesothelioma cancer. Wednesday 7th June happens to be my 50th birthday. We have decided to mark this coming of my old age by raising some funds for Mesothelioma UK. This charity and the people who support it have been a fantastic help and inspiration to Triona and myself. The challenge would be to cycle from Inverness to Gairloch on the 7th June, the next day on to Applecross and back home to Inverness after a night at the Applecross Inn. This works out as approximately 215 miles 13000 feet of ascent. We appreciate that there are many worthy causes requiring urgent funds but If you could see your way to even a few pounds the charity and us would really appreciate it. Any local cyclists feel free to join in the cycle as well - all welcome. Triona will be driving a van for bike and rider support. Huge thanks, Nigel and Triona”. Nigel completed this huge challenge and raised an amazing £3,798.47.

Claire Higgins, Carol and Caroline Race for LifeClaire, Carol and Caroline have taken part in the Race for Life on Sunday 17th July 2017 at Worcester Racecourse. This is the second time they have taken part in this race which they did in memory of Carols dear husband, Claire’s stepdad and Caroline’s Dad who sadly died of mesothelioma. They have raised a wonderful £530.00 including gift aid. They had a wonderful time and enjoyed their challenge helping to raise funds and awareness about mesothelioma donned in their lovely Meso UK t-shirts. Well done girls, you are amazing.

Nic Bracegirdle“On June 28th the Children of Halton Schools Musical event was held at the Select Security stadium, Widnes. My brother in law David Baugh is the head of Pewithall Primary school, one of the schools taking part in the event. He contacted the organisers to ask if we could fundraise at the event in memory of my dad , Roger Bracegirdle, who sadly lost his fight with Mesothelioma in August 2016. Massive thank you to all the parents and relatives of the school children for their generosity in helping us raise £938.60. Thanks also go to Roger’s wife Sue, Daughter Louis, Grandchildren Benjamin and Lily who along with myself collected the money”.

Thomas Woodward- In loving memory of Derek Powell

On 11th March my father-in-law Derek, sadly passed away after a brave and relentless fight against Mesothelioma. He handled his diagnosis in the

same way he handled other aspects of his life, with nothing but dignity and positivity. Derek’s passing has been extremely difficult for the family and all those that knew and loved him.

Derek’s family and friends donated a total of £406.87 in his memory through donations at his funeral.

“Derek was an amazing man who taught me a lot in the 13 years I was lucky enough to be a part of his life, so I naturally wanted to personally do something to raise awareness and funds for Mesothelioma UK.

On 3rd June I completed the WOLF Run. The WOLF Run is Wild Running - a unique combination of three kinds of off-road running: mud runs, trail runs and obstacle runs. It is the only Wild Run in the UK and prides itself on being a hard core 10k run across natural terrain, including open ground, woodland, lakes and thick mud. I am pleased to say that I did complete the course in a respectable time and through the support of family and friends have to date raised £305.00 with further donations still to follow”. Well Derek raised a fabulous £376.25.

Paul Tompkins - My first

half marathon having

got down from 16st

for Mesothelioma UK

Charitable Trust because

my father, Norman died

from mesothelioma.

Raised £261.38.

Michelle Finemore – 27 miles and 6 Dales

Walk in memory of Dave Batty £1,253.29

Sam Beal and Sharon Ford raising funds for Meso £200.00

Michael Payne – Celebrating his

80th birthday and

raise £380.00 in

memory of his dear

friend Derek Cridge

Bethany Dickman-

Walters – Royal Oak

Charity Event in Memory of her

dear Grandad, Colin

Dickman £1,038.50

Matthew Williams

& Susannah Wilson

– Celebrating their

wedding £127.76

Linda & Roy

Maddock – Celebrated

their wedding day

and raised a fabulous

£590.00

Richard Hoyle – Everyone Can Sing Choir at CSK in High Wycombe - £300.00

Gavin Sinclair

– The Central Public

House Gateshead

Collection - £141.00

Paulette Hughes - held a collection at her local Co-op store in Golden Cross Rochford and raised £226.00 in memory of her husband Brian

Michael Johnston - held the ‘Johnstons Trophy Cricket Match’ in June in memory of Michael’s dear Grandad,

John Johnston and raised an amazing £393.70

Whitminster Mesothelioma Support Group held a raffle in June and raised £50.00

Anthony Barlow – Ran 13+ miles for

his great mate Batesy and raised a fabulous

£3,792.50

West Midlands

Asbestos Support

Group – raised £35.50

collectio nbox

Peter Budd – had a stall at the local School Fair and raised a wonderful £300.00


Rachel & Joseph Jackson in the Norwich 10K Run“Joe and I decided to run the Norwich 10k for Mesothelioma UK after our Dad (Hero/Legend) was diagnosed with Mesothelioma in December last year. The Norfolk and Norwich hospital do not have a dedicated Meso Nurse so this is the first step towards Dads efforts to raise the £80,000 required for a dedicated Meso Nurse at the hospital, so that people who get diagnosed with the disease in the future have the expertise and support of a dedicated nurse. I can’t run to the bus, so this was going to be a huge challenge for both of us, but we did it and are still here to tell the story, so

if you could spare a few pounds towards this FANTASTIC cause, it would be greatly appreciated. We have raised £740.00 so far so if you would like to donate to help raise funds for a much needed nurse please visit our Just Giving page https://www.justgiving.com/fundraising/rachel-joe-jackson

Veronika Pickard – Charity 5-a-side FootballVeronica Rickard’s husband sadly passed away from Mesothelioma on April 1st and her family has been fundraising to help other people with mesothelioma. In the picture, her son and team ran a charity 5-a-side football competition. 16 teams entered and a

great day was had by all. There was a BBQ, face painting and games to get the whole community involved. It was so successful, they are going to make it an annual event! The family have raised £600 for Meso UK, a brilliant total - thank you to all those who supported this wonderful event.

Richard Foyster – Growing a Mo, Running a Marathon and Hiking the Swiss Alps

Richard is a partner at Ashtons Legal, mesothelioma affects many of his clients and members of the the Anglia Asbestos Disease Support Group that he works closely with. Richard therefore decided to take part in not one, but three fundraising events to raise money for Mesothelioma UK. This included growing a Moustache for Meso in Movember then on the 9th April he ran his second challenge in the Norwich Half-Marathon. The highlight of Richard’s fundraising was his third challenge which took place on the 14th June which was a hike across, over, and down the beautiful French and Swiss Alps, the views were stunning. The photographs show

Richard at the peak of one of the mountains – Fenetre d’Arpette, at 2,665 metres, and also show the view from the top of that peak. Richard commented: “The hike at all times passed through stunningly beautiful scenery but at times was physically demanding and scary! I act for so many wonderful people who have had the misfortune of being diagnosed with asbestos related conditions. They inspire me on a daily basis with their determination, positive attitude, and good humour – attributes that I was keen to use myself when the going got tough on the hike! This has inspired me to look at attempting further endurance events in the future. Watch this space!” Well done Richard what an amazing year you have had and he has raised £2,737.00 including gift aid.

Making Mesothelioma MatterAre you interested in raising awareness and funds for mesothelioma? Well you are in the right place to be inspired, we need your help to spread the word and you can do this by taking part in Runs, Walks, Skydives, Treks, Triathlons, Quiz’s, Coffee Mornings, Baking for Meso, Balls, Dances, Cricket matches, Golf Tournaments, Football Tournaments, Dress Down Days, Ice Bucket Challenge, Muffins for Meso and Moustaches for Meso and the list goes on. The funds you raise go towards the vital work that Mesothelioma UK do which without your help we wouldn’t be able to fund. Our dedicated nursing team is growing and becoming a force to be reckoned with, they are leading the way in helping those families touched by mesothelioma to get the support they need and up to date information about treatments, trials and much more. Have you considered leaving a gift in your will to Mesothelioma UK, your legacy could live on helping those still suffering with Mesothelioma. You could help fund a Mesothelioma Specialist Nursing post or fund a research project in your name. Leaving a legacy is a wonderful thing not only for the charity and the beneficiaries but also your family members. For them to see and know that your name is funding something so important to help others can be of great comfort. A gift to mesothelioma UK is a gift for those living with Mesothelioma. If you would like more information please contact Jill Lemon on 0116 2965232 or email [email protected]

We are Dedicated to Making Mesothelioma Matter and we can only do this with your help. Our vision it to be a ‘Mesothelioma Essential One Stop Shop’ for up to date support, information and education. We want to support the NHS to drive up standards and ensure equitable access to world class treatment, trials and care. We want to help the UK lead the way in making Mesothelioma history through world class audit, research and clinical trials and to raise the profile of Mesothelioma to help prevent future cases of asbestos related disease.

The UK has the highest incidence of Mesothelioma in the world so let’s do something about it.


Muffins for Meso in May 2017

We have some wonderful bakers who took part this year in our Muffin for Meso Bake Off and we would like to thank you all for taking part and supporting us with this wonderful initiative to help us raise awareness.… See you next year!!

Winner of the Best Muffin Recipe

Slater & Gordon, Baked Cheesecake

Muffin

Winner of the Best Dressed Muffins,

Norwich Support Group - Chocolate Muffins

with Crispy Sprinkles

Winner of the Most Unusual

Muffin Leanne Beswick, Wireless Infrastructure

Management - Monster Muffin

Cake

Overall Muffin Winners

Retail Merchandising Services

(RMI)Newport

• Your Legal Friend• Jan Mason – The Stag & Hounds• Boyes Turner• Ashtons Legal• LCF Law, Bradford• Brachers• Elizabeth Gwyne• Environtec Ltd, Essex• Wheatfield Junior School, Herts• Hayley Pirouet• Slater & Gordon Cardiff• Irwin Mitchell Solicitors LLP, Leeds• Retail Merchandising Services• Hannah Ball, Oxford Support Group• David Hellewell• Guy’s & St Thomas’s• O H Parsons Solicitors, Slough• Wythenshawe Support Group,

Manchester

• Jane Halton• Slater & Gordon, Manchester• Sandstar Communications Ltd,

Leicester• Helen King, Thoracic Dept,

Leicester Hospitals• Wolferstans Solicitors, Plymouth• Stephensons Solicitors LLP, Wigan• LCF Law, Bradford• Christine Berry• The Asbestos Law Partnership LLP• Hugh James Solicitors, Cardiff• Irwin Mitchell Solicitors, Cambridge• Environtec Ltd, Newport• Mick Day Skip Hire Services,

Cambridge• Hodge Jones & Allen LLP, London• Maylarch Environmental Ltd,

Oxfordshire

20 Mesothelioma UK Newsletter - Autumn Issue 2017

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 donors.

If you would like to find out more about becoming a Corporate Partner or Friend, contact our Fundraising Manager Jill Lemon on 0800 169 2409.

Gold Donors 2017/18

Silver Donors 2017/18

Corporate Partners

Bronze Donors 2017/18

Don’t forget to order your Mesothelioma UK Charity Christmas Cards, for more details on how to order go to

our website www.mesothelioma.uk.com

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Anna Crossly & Team Rainbow (Shaz, Shani & Ann) – Yorkshire 3 Peaks

The prognosis was awful. I didn’t know much about Mesothelioma, I could barely pronounce it, but what I did know was that it’s almost

always down to breathing in asbestos - which was widely used in the construction of buildings because of its resistance to fire. The cruel irony is Mags may well have been exposed to asbestos at one of the hospitals where she trained to be a doctor. You know, at a hospital, where people go to get better. But it’s not just lurking on the wards. Asbestos was banned years ago, yet it’s still in thousands of schools, hidden inches away from our children; it’s in our offices; our homes, everywhere. One tiny microscopic fibre of the stuff can lie dormant on the lining of a person’s lungs for 20 or 30 years before it rears its head in the worst way possible, as Mesothelioma. Research into Mesothelioma is MASSIVELY underfunded. Each year it kills as many people as skin cancer,

yet it receives a tiny fraction of the funding skin cancer does. Per death, £3,700 is invested in skin cancer, for Mesothelioma it’s only £480. As so many of you know, Mags is passionate about equality; she works tirelessly for better understanding and treatment of HIV (look up ‘PrEP’). But, above all else, she’s a wife and soulmate to Martin, and an adored mum to two little boys, Edward and Freddie. She’s a real life superwoman and in true Mags style, she’s defying all the odds. She’s completed her first course of chemo and the tumour has shrunk massively. And today we went running in the rain. It’s a long road ahead, but so far: Mags 1 - Mesothelioma 0. So, to all the rainbow ravers; the Prepsters; the dancers; the underdogs; the Speed Queen frequenters; the school gate smilers; the friends from far and wide... to all you humans, who Mags loves so much, please consider giving a few quid to Mesothelioma UK, via the link thingy bob. It will go towards much needed support and treatment for people suffering from Mesothelioma. Every single pound will spur me and the rest of Team Rainbow - Shaz, Ann and Shani - on, as we drag ourselves up and over those bloody big hills”. They raised a fabulous £2,513.75.

“I’ll never forget the moment my fantastic friend, Mags, told me she had an aggressive and incurable form of lung cancer... the nastiest of cancers - Mesothelioma. She was sat in my kitchen, in the same spot she’d sat so many times before, usually drinking tea or wine; always laughing, always planning. But this!! This was so bleak, that no amount of wine or tea could make things better.

Last posting date International Economy:

Monday 28th September Australia, New Zealand, Asia, Africa, South America, Russia

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USA, Canada, Singapore, Hong Kong, South AfricaTuesday 3rd November

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