June Hancock Mesothelioma Research Mesothelioma Rusty ... · More help at hand The National...

2
The incidence of mesothelioma in the UK continues to rise at an alarming rate despite the fact that asbestos is now banned in the UK, and that laws governing occupational and environmental exposure to asbestos have been made much stricter. The Government predicts that there will be at least 38,000 deaths from mesothelioma in this country and 76,000 asbestos induced lung cancer deaths over the next 20 years. The British Medical Journal says: 1 in every 100 men born in the 1940s will die from mesothelioma 1 in every 200 male deaths is from mesothelioma 1 in every 1500 female deaths is from mesothelioma. According to the Health and Safety Executive, statistics indicate that 25% of mesothelioma deaths will be in men who worked in the building industry, and that carpenters and joiners are most commonly afflicted. The BMJ reports that approximately 90% of mesothelioma deaths are due to exposure in uncontrolled environments - for example, wives washing their husband s overalls. The need for a strategy on mesothelioma - as well as research funds, advice and support - has never been greater. Fund helps Canada in the war against asbestos The patient information booklet Information for people with Mesothelioma and their carers (supported by the JHMRF) is now available to healthcare professionals treating mesothelioma patients in Canada and to those lobbying for better rights for those suffering from asbestos related diseases. Nothing like this is currently available in Canada, and it has been well received. For copies of the free booklet send a sae to The June Hancock Mesothelioma Research Fund, c/oIrwin Mitchell Solicitors, St Peters House, Hartshead, Sheffield, S1 2EL, or e- mail the Editor at ). Bereavement support — can you help? Many people find that talking to someone who has been through the same experience, and the same tide of emotions that follow the loss of a loved one, to be very helpful. Grief is not an emotion with a time span, and so many have benefited from Bereavement/Support groups long after their friend or relative has died. We receive many moving letters from bereaved families asking about support groups and some people have kindly offered to help. Would you like to form a self-help group, or a bereavement group to help others who are suffering after losing a loved one to mesothelioma? Would you like to volunteer to speak to families and friends going through difficult times following a bereavement? Would you benefit from talking to someone who understands your loss and what you and your family and friends have been through? If so, please contact us Welcome to the Fund newsletter We, the trustees and patrons of the Fund, are all proud to be part of the Fund. Relying solely on donations, we want to thank each and every one of the donors so far....every penny makes a difference. THANKYOU! Rusty bikers raise over £1,000 Thank you! To date, June s Fund has supported research projects in Leicester, Glasgow, London, and has underwritten ten large multi-professional educational events and seminars. It has supported the pilot for the MS01 trial, enabled the setting up of the national mesothelioma helpline, and enabled the publication and distribution of the first specific patient information leaflet about mesothelioma, written by Mavis Robinson MBE. MARS research A significant contribution to the MARS ˚ (Mesothelioma and Radical Surgery) research project has been made by the Fund. This is a pilot study to ascertain both the feasibility and acceptability of performing a randomised trial that compares the patient benefits of major surgery with chemotherapy and radiotherapy, with patients having only chemotherapy and no surgery at all. Some mesothelioma patients have expressed a strong wish to have major surgery. The trial will produce results in around seven years. Bart s pilot In February 2004, the June Hancock Fund contributed £19,862 to a pilot study into mesothelioma by Doctor Robin Rudd of St Bart s Hospital. The study will be based on samples taken from 20 patients with malignant mesothelioma. Without this kind of support, such studies would never get off the ground. None of this would have been possible without the many donations and legacies that we have received . thank you very much. More help at hand The National Macmillan mesothelioma resource centre has been set up in Leicester, offering help and information for sufferers of the disease, their carers and families. They can provide advice on every aspect of the disease including legal rights and welfare benefits. Call 0800 169 2049, website , or e-mail [email protected] Widow pledges to help others Hazel Fernee lost her husband Alec to mesothelioma on 8 May 2003. He had retired in August 2002, having spent all of his working life as a joiner and wood machinist. He and his family were looking forward to his retirement, and at that point his health was good. When mesothelioma was diagnosed, everyone was devastated. After his death, Mrs Fernee’s family, neighbours and friends donated £470 to the Fund in his memory. Hazel was also keen to find out more about support groups for bereaved relatives of mesothelioma victims. We were able to help Mrs Fernee with this, and she is now pledging to help others by simply being at the end of a telephone for newly bereaved relatives. If you, or someone you know, feel that you would like to talk to Hazel please contact the Editor and we will put you in touch (see contact details below).˚ Contact us! Please let us have comments, suggestions or fundraising plans, or to request further information or advice about mesothelioma and/or the Fund. We also have the names and contact numbers of many other good sources of advice and information, and asbestos victim support groups. Our website address is www.leeds.ac.uk/meso or write c/o Irwin Mitchell Solicitors, Sheffield (telephone number 0114 274 4420), email editor Kimberley Stubbs at [email protected] ˚ www.leeds.ac.uk/meso Issue 2 The trustees Adrian Budgen Adrian is a solicitor and partner in the law firm Irwin Mitchell. He represents only claimants suffering from asbestos-related injuries. Adrian successfully took June Hancock s legal battle all the way to the Court of Appeal, where it became a landmark case in relation to environmental exposure to asbestos. He and June became firm friends. Adrian is also a lay member of the All Party Parliamentary Occupational Safety and Health Group/Asbestos Sub Committee. Dr Martin Muers Martin is a consultant physician in respiratory medicine and general medicine at the Leeds General Infirmary and chair of the British Thoracic Society/Medical Research Council mesothelioma study group “MSO1” trial. Martin was June Hancock s consultant at Killingbeck Hospital in Leeds. Russell Hancock Russell is June Hancock s son. He lives and works in Leeds as an operations manager for a property development company. He is married, with a daughter called Emily June. He takes an active interest in the Fund. Dr Ed Neville Ed is a consultant physician in respiratory and general medicine in Portsmouth. He has looked after patients with mesothelioma in this dockyard city since his appointment in1983 and previously in Newcastle. He is co-author of several papers relating to palliative care in mesothelioma. Mavis Robinson MBE Mavis worked as a Macmillan nurse in Leeds in the 1980s and 90s, seeing increasing numbers of mesothelioma. She set up a national mesothelioma help and information line in 1998. Although officially retired, she works with the Ridings Asbestos Support Group (see page 4). Mavis was a great help to June and her family during her illness. In 2002 Mavis was awarded an MBE. Kate Hill Kate is a research fellow at the University of Leeds, and met June Hancock a number of times during her illness. Kate has worked alongside Dr Martin Muers as his research assistant and was pleased to become a trustee of the Fund. Vanessa Bridge Vanessa came to know June Hancock as a journalist, whilst reporting her legal case in the Yorkshire Evening Post. They became firm friends and Vanessa was immensely supportive, both professionally and personally. Vanessa set up and runs the Fund s website. Kimberley Stubbs Kimberley is June s daughter. She lives in York with her husband Michael and sons. Like her brother Russell, she feels very strongly about the deadly asbestos legacy, and helps run the Fund. How to make a donation to the Fund Making a donation couldn’t be easier .....simply send a cheque or postal order made payable to The June Hancock Mesothelioma Research Fund to the following address:- Adrian Budgen c/o Irwin Mitchell The June Hancock Mesothelioma Research Fund St Peters House Hartshead SHEFFIELD S1 2EL Telephone 0114 2744420 and ask for Pam Arkless PLEASE NOTE : If you are a taxpayer in this country, please ask for a Gift Aid form so that the Fund can claim the tax back. The June Hancock Mesothelioma Research Fund newsletter Winter 2004/2005 Donate See the fund website at: 1 6 The June Hancock Mesothelioma Research Fund www.asbestos-action.org.uk The Cardiff-based Rusty Sprocket Motorcycle Club has donated well over £1,600 through events at their local pub, a musical night, and by raffling a painting. They plan to do more in the future, knowing that they are helping people with mesothelioma and their families. We say a big WELL DONE and THANK YOU to the Rusty Sprocket Motor Cycle Club! Lack of research staggers bereaved daughter When Patricia Bryce-Maynard s father died from mesothelioma, not only was she left bereft, she was also absolutely amazed at the lack of research into the disease. Her father died on 25 July 2003, aged 67. It was a difficult death, and Patricia was determined to do what she could to stop other families from having to go through that same painful experience.˚ She has spent an enormous amount of time researching the disease and was staggered to find that there is so very little research into mesothelioma in this country. She was also amazed to find that the incidence of mesothelioma is increasing — yet still there is little research carried out into the causation and treatment of the disease. She feels her father s illness could have been managed much more effectively had there been greater awareness of mesothelioma amongst his medical team. Sadly, this is all too common, and raising awareness of the disease is one of the key objectives of the JHMRF. Patricia has vowed to address this issue, and has taken up her father s illness with local newspapers and is also working with MPs.˚˚ Patricia has donated £657.12 to the Fund in memory of her late father. June s Fund and the BLF fight together! Fund trustees have been holding discussions with the British Lung Foundation to explore how we can best raise the profile of mesothelioma, secure more research funding and provide people who have the disease with the best possible support and advice. We have agreed in principle that merger is our best hope of progressing these aims, but we have also agreed that the name of June Hancock will continue in any new structure, and that the JHMRF will continue to work on behalf of mesothelioma within the BLF. Fund trustee Kimberley Stubbs, June’s daughter, said: "In partnership, we will become an even greater force in the fight against this terrible disease. I couldn t wish for anything more, and I know that my Mum would be pleased and proud that we have come so far." Between us, we can significantly increase the profile of mesothelioma on a nationwide level by achieving a much louder voice, sharing valuable resource, and jointly lobbying those individuals and institutions that can really influence the fight against this disease. The BLF recognises the extent to which asbestos related lung diseases have been effectively ignored, despite the appalling and increasing incidence of these deaths, and they also want to see mesothelioma being a top priority for funding, research, patient support and awareness in this country. Mesothelioma research and treatment- A national strategy? Research and clinical trials, as the current treatment for the disease is inadequate; Setting up a mesothelioma committee of nurses, doctors and researchers; Increased research funding from the NHS; Movement of patients freely between cancer networks and clinicians involved with mesothelioma research (fitting in with John Reid s patient-centred NHS model); Treatment: mesothelioma sufferers should only be seen by specialists with experience and interest in the disease The establishment of mesothelioma units throughout the UK, offering the same level of diagnostic, imaging, chemotherapy, radiotherapy, clinical trials and palliative care facilities. The Government is awaiting the outcome of randomised controlled trials before it develops its own guidelines for the management of mesothelioma. The two NHS supported trials are the MSO1 trial, partly funded by the JHMRF, a chemotherapy trial, and the MALC study, a population based study of mesothelioma in relation to the occupation of British men and women under the age of 60. The Government is also currently developing four national cancer clinical audits, and one of these will include mesothelioma — we are told.˚ Mesothelioma patients should also benefit from the recently set up Lung Cancer Advisory Group, whose objective include managing the increasing incidence of mesothelioma, together with a review of how services are delivered. We will continue to campaign for a national strategy, together with clearly ring fenced funding to tackle the epidemic — after all, the epidemic is not expected to peak until 2015 and that is assuming that no-one has any further exposure to asbestos. The June Hancock Mesothelioma Research Fund There are encouraging words from the Department of Health about how the Government and the health service is tackling the deadly asbestos legacy, and how it is planning to prioritise spending in this area in the future. But there is still no firm commitment to addressing the need for a national strategy. Consultant oncologist Dr Jeremy Steele at Bart s Hospital in London, says a strategy is needed to address: FACT ..the UK faces an asbestos epidemic. FACT ..too little mesothelioma research is being carried out in this country FACT ..mesothelioma is increasing in frequency FACT ..there are over 1800 mesothelioma deaths every year in the UK˚˚ FACT in the developed world 100,000 people alive now will die from mesothelioma˚ Why is the Fund so important??? 5

Transcript of June Hancock Mesothelioma Research Mesothelioma Rusty ... · More help at hand The National...

Page 1: June Hancock Mesothelioma Research Mesothelioma Rusty ... · More help at hand The National Macmillan mesothelioma resource centre has been set up in Leicester, offering help and

The incidence of mesothelioma in the UK continues to rise at analarming rate despite the fact that asbestos is now banned in the UK,and that laws governing occupational and environmental exposureto asbestos have been made much stricter. The Government predictsthat there will be at least 38,000 deaths from mesothelioma in thiscountry and 76,000 asbestos induced lung cancer deaths over thenext 20 years.The British Medical Journal says:

1 in every 100 men born in the 1940s will die from mesothelioma1 in every 200 male deaths is from mesothelioma1 in every 1500 female deaths is from mesothelioma.

According to the Health and Safety Executive, statistics indicate that25% of mesothelioma deaths will be in men who worked in thebuilding industry, and that carpenters and joiners are most commonlyafflicted.The BMJ reports that approximately 90% of mesothelioma deaths aredue to exposure in uncontrolled environments - for example, wiveswashing their husband s overalls.The need for a strategy on mesothelioma - as well as research funds,advice and support - has never been greater.

Fund helps Canadain the war againstasbestosThe patient information booklet Informationfor people with Mesothelioma and their carers(supported by the JHMRF) is now availableto healthcare professionals treatingmesothelioma patients in Canada and tothose lobbying for better rights for thosesuffering from asbestos related diseases.Nothing like this is currently available inCanada, and it has been well received.For copies of the free booklet send a sae toThe June Hancock Mesothelioma ResearchFund, c/oIrwin Mitchell Solicitors, St PetersHouse, Hartshead, Sheffield, S1 2EL, or e-mail the Editor at ).Bereavement support — can you help?Many people find that talking to someonewho has been through the same experience,and the same tide of emotions that followthe loss of a loved one, to be very helpful.Grief is not an emotion with a time span,and so many have benefited fromBereavement/Support groups long after theirfriend or relative has died.We receive many moving letters frombereaved families asking about supportgroups and some people have kindly offeredto help. Would you like to form a self-helpgroup, or a bereavement group to help otherswho are suffering after losing a loved one tomesothelioma? Would you like to volunteerto speak to families and friends going throughdifficult times following a bereavement?Would you benefit from talking to someonewho understands your loss and what youand your family and friends have beenthrough? If so, please contact us

Welcome to the Fundnewsletter

We, the trustees and patrons of the Fund, are all proud to be partof the Fund. Relying solely on donations, we want to thank eachand every one of the donors so far....every penny makes a difference.

THANKYOU!

Rusty bikers raise over £1,000

Thank you!To date, June s Fund has supported researchprojects in Leicester, Glasgow, London, andhas underwritten ten large multi-professionaleducational events and seminars. It hassupported the pilot for the MS01 trial,enabled the setting up of the nationalmesothelioma helpline, and enabled thepublication and distribution of the firstspecific patient information leaflet aboutmesothelioma, written by Mavis RobinsonMBE.

MARS researchA significant contribution to the MARS ˚(Mesothelioma and Radical Surgery) researchproject has been made by the Fund. This isa pilot study to ascertain both the feasibilityand acceptability of performing arandomised trial that compares the patientbenefits of major surgery with chemotherapyand radiotherapy, with patients having onlychemotherapy and no surgery at all. Somemesothelioma patients have expressed astrong wish to have major surgery. The trialwill produce results in around seven years.

Bart s pilotIn February 2004, the June Hancock Fundcontributed £19,862 to a pilot study intomesothelioma by Doctor Robin Rudd of StBart s Hospital. The study will be based onsamples taken from 20 patients withmalignant mesothelioma. Without this kindof support, such studies would never getoff the ground.None of this would have been possiblewithout the many donations and legaciesthat we have received . thank you verymuch.

More help at handThe National Macmillan mesotheliomaresource centre has been set up in Leicester,offering help and information for sufferersof the disease, their carers and families. Theycan provide advice on every aspect of thedisease including legal rights and welfarebenefits. Call 0800 169 2049, website , ore-mail [email protected]

Widow pledges tohelp othersHazel Fernee lost her husband Alec tomesothelioma on 8 May 2003. He had retiredin August 2002, having spent all of hisworking life as a joiner and wood machinist.He and his family were looking forward tohis retirement, and at that point his healthwas good. When mesothelioma wasdiagnosed, everyone was devastated.After his death, Mrs Fernee’s family,neighbours and friends donated £470 tothe Fund in his memory. Hazel was also keento find out more about support groups forbereaved relatives of mesothelioma victims.We were able to help Mrs Fernee with this,and she is now pledging to help others bysimply being at the end of a telephone fornewly bereaved relatives.If you, or someone you know, feel that youwould like to talk to Hazel please contactthe Editor and we will put you in touch (seecontact details below).˚

Contact us!Please let us have comments, suggestionsor fundraising plans, or to request furtherinformation or advice about mesotheliomaand/or the Fund. We also have the namesand contact numbers of many other goodsources of advice and information, andasbestos victim support groups. Our websiteaddress is www.leeds.ac.uk/meso or writec/o Irwin Mitchell Solicitors, Sheffield(telephone number 0114 274 4420), emaileditor Kimberley Stubbs [email protected]˚

www.leeds.ac.uk/meso

Issue 2

The trustees

Adrian BudgenAdrian is a solicitor and partner in the law firmIrwin Mitchell. He represents only claimantssuffering from asbestos-related injuries. Adriansuccessfully took June Hancock s legal battle allthe way to the Court of Appeal, where it becamea landmark case in relation to environmentalexposure to asbestos. He and June became firmfriends.Adrian is also a lay member of the All PartyParliamentary Occupational Safety and HealthGroup/Asbestos Sub Committee.

Dr Martin MuersMartin is a consultant physician in respiratorymedicine and general medicine at the Leeds GeneralInfirmary and chair of the British ThoracicSociety/Medical Research Council mesotheliomastudy group “MSO1” trial. Martin was JuneHancock s consultant at Killingbeck Hospital inLeeds.

Russell HancockRussell is June Hancock s son. He lives and worksin Leeds as an operations manager for a propertydevelopment company. He is married, with adaughter called Emily June. He takes an activeinterest in the Fund.

Dr Ed NevilleEd is a consultant physician in respiratory andgeneral medicine in Portsmouth. He has lookedafter patients with mesothelioma in this dockyardcity since his appointment in1983 and previouslyin Newcastle. He is co-author of several papersrelating to palliative care in mesothelioma.

Mavis Robinson MBEMavis worked as a Macmillan nurse in Leeds in the1980s and 90s, seeing increasing numbers ofmesothelioma. She set up a national mesotheliomahelp and information line in 1998. Althoughofficially retired, she works with the RidingsAsbestos Support Group (see page 4).Mavis was a great help to June and her familyduring her illness. In 2002 Mavis was awarded anMBE.

Kate HillKate is a research fellow at the University of Leeds,and met June Hancock a number of times duringher illness. Kate has worked alongside Dr MartinMuers as his research assistant and was pleasedto become a trustee of the Fund.

Vanessa BridgeVanessa came to know June Hancock as a journalist,whilst reporting her legal case in the YorkshireEvening Post. They became firm friends and Vanessawas immensely supportive, both professionally andpersonally. Vanessa set up and runs the Fund swebsite.

Kimberley StubbsKimberley is June s daughter. She lives in York withher husband Michael and sons. Like her brotherRussell, she feels very strongly about the deadlyasbestos legacy, and helps run the Fund.

How to make adonation to theFundMaking a donation couldn’t beeasier.....simply send a cheque orpostal order made payable to TheJune Hancock MesotheliomaResearch Fund to the followingaddress:-

Adrian Budgenc/o Irwin MitchellThe June Hancock MesotheliomaResearch FundSt Peters HouseHartsheadSHEFFIELDS1 2EL

Telephone 0114 2744420and ask for Pam Arkless

PLEASE NOTE : If you are ataxpayer in this country, please askfor a Gift Aid form so that theFund can claim the tax back.

The June HancockMesotheliomaResearch

Fund

newsletterWinter 2004/2005

Donate

See the fund website at:

16

The June HancockMesotheliomaResearch

Fund

www.asbestos-action.org.uk

The Cardiff-based Rusty Sprocket Motorcycle Club has donated well over £1,600 through eventsat their local pub, a musical night, and by raffling a painting. They plan to do more in thefuture, knowing that they are helping people with mesothelioma and their families.We say a big WELL DONE and THANK YOU to the Rusty Sprocket Motor Cycle Club!

Lack of researchstaggers bereaveddaughterWhen Patricia Bryce-Maynard s father died from mesothelioma, not only was she left bereft,she was also absolutely amazed at the lack of research into the disease. Her father died on25 July 2003, aged 67. It was a difficult death, and Patricia was determined to do what shecould to stop other families from having to go through that same painful experience.˚She has spent an enormous amount of time researching the disease and was staggered to findthat there is so very little research into mesothelioma in this country.She was also amazed to find that the incidence of mesothelioma is increasing — yet still thereis little research carried out into the causation and treatment of the disease.She feels her father s illness could have been managed much more effectively had there beengreater awareness of mesothelioma amongst his medical team. Sadly, this is all too common,and raising awareness of the disease is one of the key objectives of the JHMRF. Patricia hasvowed to address this issue, and has taken up her father s illness with local newspapers andis also working with MPs.˚˚Patricia has donated £657.12 to the Fund in memory of her late father.

June s Fundand the BLFfight together!Fund trustees have been holdingdiscussions with the British LungFoundation to explore how we canbest raise the profile of mesothelioma,secure more research funding and providepeople who have the disease with the bestpossible support and advice.

We have agreed in principle that merger is our best hope of progressingthese aims, but we have also agreed that the name of June Hancockwill continue in any new structure, and that the JHMRF will continueto work on behalf of mesothelioma within the BLF.

Fund trustee Kimberley Stubbs, June’s daughter, said: "In partnership,we will become an even greater force in the fight against this terribledisease. I couldn t wish for anything more, and I know that my Mumwould be pleased and proud that we have come so far."

Between us, we can significantly increase the profile of mesotheliomaon a nationwide level by achieving a much louder voice, sharing valuableresource, and jointly lobbying those individuals and institutions thatcan really influence the fight against this disease.

The BLF recognises the extent to which asbestos related lung diseaseshave been effectively ignored, despite the appalling and increasingincidence of these deaths, and they also want to see mesotheliomabeing a top priority for funding, research, patient support and awarenessin this country.

Mesothelioma research and treatment-A national strategy?

Research and clinical trials, as the current treatmentfor the disease is inadequate;

Setting up a mesothelioma committee of nurses,doctors and researchers;

Increased research funding from the NHS;Movement of patients freely between cancer

networks and clinicians involved with mesotheliomaresearch (fitting in with John Reid s patient-centredNHS model);

Treatment: mesothelioma sufferers should only beseen by specialists with experience and interest in thedisease

The establishment of mesothelioma units throughoutthe UK, offering the same level of diagnostic, imaging,chemotherapy, radiotherapy, clinical trials and palliativecare facilities.The Government is awaiting the outcome of randomisedcontrolled trials before it develops its own guidelinesfor the management of mesothelioma.

The two NHS supported trials are the MSO1 trial, partlyfunded by the JHMRF, a chemotherapy trial, and theMALC study, a population based study of mesotheliomain relation to the occupation of British men and womenunder the age of 60.The Government is also currently developing fournational cancer clinical audits, and one of these willinclude mesothelioma — we are told.˚ Mesotheliomapatients should also benefit from the recently set upLung Cancer Advisory Group, whose objective includemanaging the increasing incidence of mesothelioma,together with a review of how services are delivered.We will continue to campaign for a national strategy,together with clearly ring fenced funding to tackle theepidemic — after all, the epidemic is not expected topeak until 2015 and that is assuming that no-one hasany further exposure to asbestos.

The June HancockMesotheliomaResearch

Fund

There are encouraging words from the Department of Health about how theGovernment and the health service is tackling the deadly asbestos legacy, andhow it is planning to prioritise spending in this area in the future. But there is stillno firm commitment to addressing the need for a national strategy. Consultantoncologist Dr Jeremy Steele at Bart s Hospital in London, says a strategy is neededto address:

FACT ..the UK faces an asbestos epidemic.FACT ..too little mesothelioma research is being carried out in this countryFACT ..mesothelioma is increasing in frequencyFACT ..there are over 1800 mesothelioma deaths every year in the UK˚˚FACT in the developed world 100,000 people alive now will die from mesothelioma˚

Why is the Fund so important???

5

Page 2: June Hancock Mesothelioma Research Mesothelioma Rusty ... · More help at hand The National Macmillan mesothelioma resource centre has been set up in Leicester, offering help and

The Fund and the BLF are working together for aNational mesothelioma action day in early 2006.This campaign will be a first for mesothelioma,its victims and their familiesA mesothelioma summit is being held in Londonon 9 March 2005 to agree the strategy and to laydown the foundation for the action day.A charter for mesothelioma is also being drawnup, to outline what we believe mesotheliomapatients and families should have a right to.This is a very important step forward, and meetsthe patient care objectives of the June HancockMesoethlioma Research Fund.As well as addressing the rights of the patientsan d their families (these include good qualityinformation, up to date benefits advice, support

of an experienced nurse, consideration for bestpossible treatments, legal advice, and guidanceon end of life decisions), the Charter also definesthe expectations placed upon the Government interms of priority, funding, and best practice,together with a call upon employers to ensureprevention of exposure to asbestos at work.We hope you will agree that between us and theBLF we are going to make a real difference notjust words but action. You will be hearing moreand more about mesothelioma as a result of thisjoint initiative, and more answers will bedemanded as to why so little is being done.For developments, please see our website atwww.leeds.ac.uk/meso

The patrons

John Battle MPJohn is the MP for Leeds West , whichincludes Armley. He came to knowJune Hancock through her legal battleagainst the owners of the JW Robertsasbestos factory in Leeds. John waswell aware of the timebomb in thatarea caused by exposure to asbestos.John was very supportive, andcontinues to work hard in this area,campaigning for the rights of asbestosvictims in Parliament. He is a memberof the Asbestos Parliamentary Group.

Robin Stewart QCRobin was June Hancock s barristerthroughout her two year legal battleagainst T & N. June thought very highlyof her legal team, and was immenselyproud of them as both professionalsand friends, and Robin felt the sameway about June too. With exceptionaltalent, Robin is highly regarded in hisprofession. Robin lives in Thirsk, NorthYorkshire.

Geeta Guru-MurthyGeeta met June Hancock when shewas reporting for the BBC Look Northprogramme˚in Leeds. She coveredJune s legal battle extensively, andthey came to know each other well.Geeta now works for BBC News 24and continues to support the Fund inwhatever way she can.

Laurie Kazan-AllenTo say that Laurie is a tirelesscampaigner is an understatement.Laurie has advocated on behalf ofasbestos victims both in the UK andabroad for many years, and is the co-ordinator of the International BanAsbestos Secretariat . Laurie is alsothe Editor of the British AsbestosNewsletter .Laurie has supported the Fund sinceits inception. She knew June Hancockquite well and was very impressed byJune s gentle determination in theface of her illness. Laurie is highlyrespected both nationally andinternationally in her field, and isstriving to achieve a global ban on theuse of asbestos.˚

The June HancockMesotheliomaResearch

Fund

4

he June Hancock Mesothelioma Research Fundwas established in 1997 shortly after the deathof June from mesothelioma in July that year. June smother Maie Gelder had also died from the diseasein 1982, and it was that double tragedy that ledJune to seek justice in a test case against theowners of the J W Roberts asbestos factory inArmley, Leeds.They had negligently contaminated not just theirown workforce, but also the local neighbourhood,with deadly asbestos dust.June s high profile case sought to establish thatJ W Roberts (and its parent company Turner andNewall — now known as T&N) was liable for thelung injuries caused by exposure to asbestos dustin the environment.June had never worked with asbestos, but hadbeen brought up close to the factory in Armley.Her exposure, and ultimately her illness, came asa result of playing in and around the asbestosfactory as a child.June was diagnosed with mesothelioma in 1994,and decided to seek justice for herself, her motherand other sufferers in the future. Her solicitorsIrwin Mitchell knew the enormity of the task, butagainst all the odds proved that T&N were indeedliable.

Public awareness ofthis deadlyasbestos legacyand painful diseasewas raised as aresult of thesuccessful landmarkvictory, and so it wasthe wish of June’s family,together with her dedicatedlegal and professional team, to establish the JHMRFto continue June’s battle in her name.So far, the June Hancock Mesothelioma ResearchFund has supported important research projectsin Leicester, Glasgow, and London and hasunderwritten ten large multi — professionaleducational events.The Fund has also supported the pilot for theMSO1 trial, enabled the setting up of the NationalMesothelioma Helpline, and enabled the continuedpublication and distribution of the first patientspecific information leaflet about mesothelioma(written by Mavis Robinson MBE)

In June 2004 Michele Sturgess kept thepromise she made to her late father Roger,and ran the London Marathon. As well asbeing an incredible achievement, Michelealso raised˚ £1981.for the Fund. After herfather s death from mesothelioma, she wasdetermined to help raise awareness of thedisease and also to help provide funds forresearch, and is keen to continue the fightagainst asbestos in any way she can.

Thank you also to Louise Allen who isarranging sponsorship events to raise moneyfor the Fund, in memory of her late fatherMr Whiting.

Greg Steel is busy raising money for usafter his father was diagnosed withmesothelioma. Greg has been busy withmany events, including a sponsored slim, theThree Peaks walk, and possibly a parachutejump!

Karen Wright, who lost her father tomesothelioma, continues to raise money forthe Fund with her family and friends. Havingdonated £2,500 from a disco and auctiontwo years ago, she has since donated afurther £748 as a result of a sponsored slimby herself and her husband Chris and friends.Keeping it in the family, younger brotherStuart took part in the Great North Run lastSeptember, a half marathon for which he

sought sponsorship in aid of the JuneHancock Fund. Having never completed arun of this kind before, it was a hugechallenge to take on board.

Her best friend s daughter, SamanthaProtheroe has also been doing a fantasticjob of raising money! She raised a staggering£58 during summer school term by takingpart in a sponsored silence for a whole day!

Roberta Black contacted us following thedeath of her husband John on the 14 January2004, aged just 55. Many of John s familyand friends wanted to donate to the JuneHancock Fund, because that was John s wish.We have received many donations in hismemory, totalling well over £600.

Mike Wise was dying from asbestos-relatedcancer when he started fundraising for theFund. He and his friend Paul Wood organisedan evening s entertainment at their localchurch, St Martins, attended by over 70people, raising a total of £457.77. DespiteMike s ill health both he and Paul weredetermined to carry on fundraising.Sadly Mike died on July 9.˚ In his memory —and from a 60s & 70s disco organised byPaul — a further total of £330 was raised.

Paul Eddlestone’s father in law — StuartTriggs — died from mesothelioma in 1997

aged just 50. His family felt there was a lackof knowledge and information about thedisease even amongst the healthcareprofessionals looking after him. When MrTriggs widow Genene received theinformation from the JHMRF, she expressedher sadness that she did not have this kindof help at the time. Genene’s son in law Pauldecided to participate in the Great NorthRun — and raised over £650 for the Fund.˚

Guy Darlaston, of Irwin Mitchell Solicitors,chose to donate all monies received from hisparticipation in the London Marathon in2004.˚ Guy did fantastically well, finishingthe marathon in 4 hours and 32minutes and raising over £1,500 for theFund.˚

MP opens RASAG officeThe Ridings Asbestos Support and Awareness Group (RASAG) office in Armley, Leeds was officiallyopened in a ceremony in January 2004 attended by JHMRF trustees Mavis Robinson and KimberleyStubbs, Fund patron and Leeds West MP John Battle and others.The RASAG was formed with a grant from the JHMRF to provide help and advice to victims of asbestosrelated illnesses, and to their families. It is staffed by mesothelioma nursing expert Mavis Robinson.˚˚˚The photograph shows June and a plaque commemorating the opening of RASAG in June s memory,being unveiled. In a moving speech, John Battle remembered June fondly and spoke of his proudassociation with the Fund and its objectives. John continues to take up the battle for asbestos victimsin Parliament.RASAG is at 50B Town Street, Armley, Leeds LS12 3AA, 0113 231 1010

Trustee speaks out for asbestos victims at T&N protestIn November 2003 a well-attended public demonstration was held outside the Manchester offices of T&N, the company formerly knownas Turner and Newall that June Hancock successfully sued for causing hers and her Mother s mesothelioma as a result of environmentalexposure to asbestos in Armley, Leeds.The protest was to highlight the excessive fees being charged by the T&N/Federal Mogul Administrators in both the UK and USA.Angry at the £17,000,000 being paid out in fees to date, Russell Hancock — Fund trustee and son of June Hancock — voiced his dismayat how a company proven responsible for negligently exposing many innocent workers and neighbourhoods to deadly asbestos, couldoversee the funds available to compensate victims being dwindled away on apparently extortionate fees.Since T&N went into administration in 2001, asbestos victims have not received a single penny in compensation. This is nothing shortof a scandal, and campaigners are working hard to fight against this.Fund trustees and patrons are determined to keep this national tragedy in the public domain, and so give their time freely to highlightthe injustice of the situation. As a member of the All Party Parliamentary Asbestos Sub Committee, Fund trustee Adrian Budgen worksto highlight the plight of asbestos victims in this country and to help bring about pressure to rectify it.˚˚

Study day raisesawareness AND£500!A Study Day for the Mesothelioma NursesNetwork — sponsored by Irwin Mitchell —at theSheffield Wednesday Football Club ground waswell attended. Speakers included MavisRobinson MBE, a welfare and benefits advisor,an asbestos personal injury lawyer, and arepresentative of the Institute of CancerResearch.˚The new Industrial Injuries Disablement Benefitform was unveiled; it enables specialist canceror respiratory disease nurses to confirm thediagnosis of mesothelioma, which meanspatients have to wait less time for the diagnosisto be formally confirmed.Doctors Martin Muers and Helen Clayson lookedat current and possible future treatments formesothelioma and support for patients andtheir families. Palliative care was also examined.Irwin Mitchell partner and Fund trustee AdrianBudgen talked about the lawyer s perspectiveon mesothelioma, and Liz Darlison brought theevent to a conclusion with her informativeintroduction to the National MacmillanMesothelioma Resource Centre.˚˚ The dayprovided much valuable information on allaspects of the disease to those who need it,and also raised £500 towards the June HancockFund.

Photograph shows Trustees of the June HancockMesothelioma Research Fund accepting thecheque for £500, raised through the Study Day.Left to right Trustees Mavis Robinson, AdrianBudgen, Kimberley Stubbs and Kate Hill.

Charity Galaraises £820When Marie Williams mother succumbed tomesothelioma she decided to raise funds forboth the June Hancock charity, and the localhospice that cared for her.The Charity Gala was born .and on 27th

February 2004 an evening of singing, dancing,drama and music was held at Corpus ChristiChurch in Weston Super Mare.Marie spent many weeks preparing for theevent, and received lots of support from friends,colleagues and local businesses.Over 100 people attended, and raffles, tombolasand competitions were organised all helpingtowards the total of £820 which was donatedto the JHMRF.After the cheque was presented to KimberleyStubbs (Trustee) outside York MinsterPHOTOGRAPH(see right) Marie commented:This money is a need to say thank you and

please to those researchers — carry on the worknecessary to find out more about mesotheliomaand also to those responsible for providingsupport and information.Why do we need a

separate fund forMesothelioma?Asbestosis is, thankfully, dying out in theUK but the incidence of mesothelioma hasincreased threefold since 1990. Killingapproximately 1800 people a year (that s twicethe number of people dying from cervical cancer)there is a woefully low amount of funding andscreening for this disease.

We know that the peak of this national disasteris still to come in around 10 years time, and ontop of that innocent people are still being exposedto asbestos in their homes and workplaces.Deaths from different types of cancer are decliningas they benefit from the millions of pounds spenton research. Asbestos is the leading cause ofdeaths in the work place and kills more peoplethan road accidents every year YET there are nospecific Government funds allocated to thisepidemic. Unbelievable but sadly true.

The Fund s AIMSTo encourage and sponsor vital epidemiological research into the causes of mesothelioma,

and the exact part that asbestos plays in its causationTo contribute to clinical trials with novel drug therapies for mesotheliomaTo raise awareness of the disease amongst healthcare professionals via a series of educational

seminars for nurses, GP s and palliative care specialists, in conjunction with Irwin Mitchell solicitorsTo provide straightforward and easy to understand information and advice to mesothelioma

sufferers and their families and carers.˚The Fund helps finance the Mesothelioma Information Service- a help line and advice service, which also provides access to a national network of specialist nurses.˚The Fund s primary objectives are based on a real need to raise money for research into mesotheliomain the United Kingdom, as very little research is carried out on this specific disease . yet at least oneperson dies from this painful and cruel disease every five hours.

The Fund continuesto grow!The Fund has so far raised over £250,000 and has a balance of £166,774 which enables us to continueto make a real contribution to those important mesothelioma research projects. Every penny comesfrom donations so please continue to help us help mesothelioma victims and their families in thiscountry.More ways you can help the Fund grow…Have you considered pledging a regular donation, perhaps monthly?Are you a UK taxpayer and wish to make a donation? If so a Gift Aid form will allow us to claim backthe income tax on your donationPlease contact the editor and we will help you make the most of your donation(s)

Remembering June

A big thanks to you all!

June Hancock sdaughter KimberleyStubbs, right, andMavis Robinsonfromthe RidingsAsbestos SupportGroup at the openingof the new office inArmley.

Day of Action!

Following the death of her brother Russell,Stephanie Hills family and friends embarkedupon a 24 hour darts marathon, a raffle anda disco and raised £2,000 for theFund.˚Thank you to Stephanie, and Russell sthree other sisters Maureen, Beverley andNicola, and his brothers Mark, Robert, Trevorand Karl, and everyone else.

Stephanie Hill andfamily and friendsraised £2000 inmemory of her latebrother RussellAuger

Kimberley Stubbs(left)and MarieWilliams (right)receiving chequeoutside York Minster

www.leeds.ac.uk/meso

The June HancockMesotheliomaResearch

Fund

2 3