dast a nual report 2016 - 017 - asbestos...
TRANSCRIPT
DAST Annual Report 2016 - 2017
2
Contents
Welcome to the DAST Annual Report 2016 - 2017 3-5
Background and History of DAST 6-7
Our Service 8-9
Individual Support 10-15
Group Support 16-18
Bereavement Support 18-23
Action Mesothelioma Day 23-27
Japanese Delegation Welcome 28-32
Workers’ Memorial Day 32-33
Campaigning 34-35
Networking in Derbyshire 36-37
Fundraising 38-42
Contact Details and Acknowledgments 43
Front Cover photos - Action Mesothelioma Day
Welcome to the 2016 - 2017 DAST Annual Report. Thank youfor taking the time to read it; this report gives a brief
insight into what the team have been doing in the past year. Ihope that you find it interesting.
As with last year, the past year has shown no respite in thenumber of asbestos related deaths in the UK. This is reflected inthe number of cases where our team have been involved, andwhere our legal partners have taken on compensation claims. Thistrend shows no sign of abating in the immediate future,personally I can't see it decreasing for a long time in the future.
Looking back on some of the activities during the past year thehighlight has to be the visit of a group of Japanese victims ofasbestos related diseases, who along with their supporters, werethe guests of DAST. They were part of a larger group who cameover to the UK for 'Action Mesothelioma Day'. DAST, along with afew other members of the 'Forum' hosted this small group at awelcome and social evening in Chesterfield on the day before our'Action Mesothelioma Day’ event in Derby. Our guests spoke atboth events about the issues that they had, and still have, inJapan regarding asbestos related diseases.
On April 28th several of us attended 'Workers Memorial Day'events around our region. I again attended the three events inNorth-East Lincolnshire. These events are very well organised andare a pleasure and privilege to be a part of.
We also enlarged our group of panel solicitors with the addition ofLeigh Day solicitors. Leigh Day are represented by Helen Ashtonfor DAST work.
The 'Bereavement Group' is working very well under Jo Reeve’sleadership. Fortunately we have been able to obtain financialsupport so that Jo can continue her good work beyond the initial 3
Welcome to the DAST Annualreport 2016 - 2017
period of the bereavement support project. On the subject ofobtaining financial support, Sarah Walters, our fundraiser, iscontinuing her good work in keeping the money coming in.
It was with much sorrow that we learnt of the deaths, only ashort period of time apart, of Margaret and George Bailey. Theyboth worked very hard for DAST, always selling raffle tickets atour events and helping raise funds in and around Ripley. Theyare missed.
Since I wrote last year's 'Chairs' page, we received the brilliantnews that both Canada and The Ukraine are to ban the use ofasbestos from 2018. Anti asbestos activists are also workinghard in other countries to get asbestos banned. In India, theKolkata City authority has announced that the use of asbestosroofing materials is to be banned. Though small, it is a start.
On the downside was the negative decision taken at the CoP 8Conference in Geneva in May not to list chrysotile as acarcinogen. Yet again the chrysotile producing countries votedagainst the proposal. Anti asbestos activists world-wide are ofthe opinion now that the CoP process, as a route to gettingasbestos banned, is not working, we have to look at other ways ofachieving our aim.
The chrysotile industry is not giving up with its, ‘alleged’, viewthat chrysotile is safe, non-cancerous and, therefore, should notbe banned. Equally as bad is the news that the United States isimporting more chrysotile now than ever before for use in thechemical and automobile accessory production. We are alsoseeing groups purporting to be workers’ rights groups from theasbestos producing countries saying how safe chrysotile is andthat European and Australian trade unions are letting theirmembers down by not accepting the 'safe' material that ischrysotile asbestos to be used in the workplaces.
We have a hard fight on our hands in trying to get all asbestosbanned world-wide.
4
5
Thank youMy thanks go to the DAST Staff, Volunteers, ManagementCommittee, Supporters Groups. Any patients and familymembers who have spoken out to tell their story at meetingsor to the media.
Our Panel firms, Thompsons; O H Parsons; Graysons and Leigh Day.
The Trade Unions who support us especially the Unite DerbyDE40 Branch who give a welcome donation every year.
Also the other organisations that have given their supportover the past year.
Thanks to everyone who has sent donations and donefundraising for DAST.
THANK YOU.
Dave Trigg. Hon Chair, DAST
Dave Trigg
6
The Launch of DASTThe Derbyshire Asbestos Support Team was established in 2002by the Trade Union Safety Team, at which time Joanne Gordon(nee Carlin) was Assistant Co-ordinator to John Knight (the thenCo-ordinator). It became apparent at that time that themajority of those people accessing the services provided byTRUST were mainly people suffering from asbestos relateddiseases. Therefore, after much planning, in March 2002 theofficial launch of DAST took place in Chesterfield and we startedto undertake home visits. By 2003 Joanne became Co-ordinatoras John Knight had moved on from the organisation and withJohn Bradley as project worker, we were busy with home visits.
Expanding our serviceThe area we covered quickly grew within the East Midlands andlinks were made with hospitals and lung cancer nurses whichstill continuestoday. By 2006it was felt that,as the workloadof DAST hadgrown, weneeded to moveforward intocharitablestatus in orderto attractsufficientfunding to takeon anotherworker. Ourapplication tobecome aregistered
Background & History of DAST
Pictured right: Natalie Woodward, Benefits advisor
7
charity was successful and so in 2007 a successful applicationwas made to Macmillan Cancer Support for funding so that wecould employ a full-time Welfare Benefits Advisor.
In January 2008 Natalie Woodward, an experienced welfarebenefits advisor, joined the team, funded by the Macmillangrant and later the same year, Shay Boyle, who was at the timea volunteer, joined the team as a part-time project worker. JohnBradley moved on from the organisation in 2008 and so we had 2full-time and one part-time worker within the team. Fortunately,we were helped by volunteers over the years since 2002 forwhich we were and still are very grateful. As the team grew andwith their specific roles in place, it gave Joanne time to developand steer the group forward. This culminated in DAST being afounder-member of the Asbestos Victims Support Groups’ Forum,of which Joanne is Secretary. The Forum also links with othergroups within the UK to ensure ‘best practice’ is maintainedthroughout.
It is important to maintain communication links with those whoseek our services and so we offer meetings, conferences, coffeemornings and the annual vintage tea, along with our telephonehelpline support to ensure we are there when people need us andto answer their questions and ensure home visits are arrangedas quickly as possible.
In 2013 in order that we could develop a more strategicfundraising plan and look to the future, we employed SarahWalters, our Funding Development Worker. We had identified agap in our service provision in that more needed to be done tosupport families following a bereavement from an asbestosrelated disease. Following a successful bid to the Big Lottery wewere able to provide a bereavement service and employed JoReeve in July 2015.
We help and support anyone who has been diagnosed with anasbestos related disease and their family and carers.
We cover the whole of the East Midlands including Derbyshire,Nottinghamshire, Leicestershire, Lincolnshire andNorthamptonshire as well as Burton-on-Trent and parts ofCambridgeshire. DAST is supported by the Trade Unionmovement throughout the East Midlands.
Our holistic service includes individual support including accessto welfare benefits and compensation. We also act as a supportgroup, maintaining communication with everyone through ournewsletters, as well as meetings and conferences. We raiseawareness about the dangers of asbestos as well as campaigningfor a better future for those diagnosed with asbestos relateddiseases.
2006 was the first year of Action Mesothelioma Day, animportant day in our calendar when we raise awareness and theprofile of the asbestos related lung cancer – Mesothelioma.
We continue toraise awarenessabout thedangers ofasbestos withour Asbestos inSchools project,the AsbestosHouse projectwhich identifieswhere asbestosmay be found inthe home andour HeritageLottery Project.
8
Action Mesothelioma Day
Our Service
Thank you to our VolunteersDAST could not haveachieved all that wehave without thesupport and time ofgenerous volunteerswho have undertakena range of tasks. Thesupport of volunteersenables us tocontinue raisingawareness, fightinginjustice and offeringmuch needed supportto patients and theirfamilies.
A number of ourvolunteers have beenaffected by an asbestos related disease and it is that experiencethat informs, motivates and drives them to contribute to thework of DAST.
Over the last 12 months we have been developing our Volunteeringroles which has included organising a training day for volunteersto give them a wider picture of DAST’s work, the Asbestos VictimsSupport Groups’ Forum and our campaigning.
Our volunteer roles include promoting the work of DAST in thelocal community, helping out at events, fundraising for DAST anda number of volunteers are also being supported to facilitate theBereavement Support Lighthouse Groups (see later in the report).
We are also proud to announce that we have been awarded TheChesterfield Volunteering Strategy Group Quality Accreditationdemonstrating that DAST meets the standard necessary topositively support volunteering in the Community.
9
Jemma Glossop holding the Accreditation Award
10
Welfare Benefits and CompensationOn initial contact to DAST either by a professional or in person bythe victim, we organise a home visit. We aim to undertake thehome visit within 7 days, which includes weekends. However, onaverage, we make the visit within 5 days.
Our individual service includes access to welfare benefits, whereappropriate, after a benefits assessment. We then go on to helpservice users apply for a range of benefits including IndustrialInjuries Disablement Benefit, Attendance Allowance, PersonalIndependence Payment, Constant Attendance Allowance,Employment and Support Allowance and a lump sum from theGovernment (Workers’ Compensation Scheme or the 2008Scheme). Where appropriate this may also include means tested benefits. We also act as an advocate and representationat Tribunals.
During the year under review we have helped and supported 239people with asbestos related diseases (excluding visitsundertaken as part of the Big Lottery Bereavement Project) ofwhich 169 were diagnosed with Mesothelioma (terminal asbestoscancer) or lung cancer. Of those helped and supported 44 werefemales. Sadly, there seems a general upward trend in thenumber of Mesothelioma cases in women. Please see table 1.
“Made a big difference not to worry about money so much.”Feedback Questionnaire 2017
Individual Support
11
Area
Disease
No Male Female
under 4
040-49 50-64
65-70 71-74
75-79
80+
Derbyshire
Mesothelioma/Lung 19
109
44
27
2Other d
iseases
33
12
Chesterfield
Mesothelioma/Lung
98
13
13
2Other d
iseases
11
1Bolso
ver
Mesothelioma/Lung
54
13
11
Other d
iseases
North East
Mesothelioma/Lung
22
2Derbyshire
Other d
iseases
11
1Derby
Mesothelioma/Lung
99
34
2Other d
iseases
44
11
11
Leicestershire
Mesothelioma/Lung
33
11
1Other d
iseases
33
12
Nottingham
shire
Mesothelioma/Lung 36
288
24
65
811
Other d
iseases
1614
22
27
11
3Northamptonshire
Mesothelioma/Lung 29
1910
43
139
Other d
iseases
22
2Other a
reas
Mesothelioma/Lung 25
241
111
12
10Ho
me v
isit
Other d
iseases
44
21
1taken place
Lincolnshire
Mesothelioma/Lung 59
4712
310
1513
18Other d
iseases
77
22
3No
Hom
e visit
Mesothelioma/Lung
Tel. support
Other d
iseases
22
11
Totals
239 195
44
2 2
29
4533
61
67
Table 1
12
“Everybody has made it so easy for us without a lot of stress.Would like to thank everybody for the help we had thank
you.” Feedback Questionnaire 2017
Case Study 2 - Offering a comprehensive serviceHarry was referred to us by another agency as he wassuffering from asbestosis as well as terminal bowel cancer.The other agency felt DAST was in the best position to offer anholistic service to Harry. We made applications for IndustrialInjuries Disablement Benefit, the Government lump sumunder the Workers’ Compensation scheme as well asAttendance Allowance.
Case Study 1 - Offering a Comprehensive ServiceAnthony was referred to us because he had been diagnosedwith Mesothelioma. His only exposure to asbestos was duringhis service in the Royal Air Force. We assisted him claiming alump sum payment under the Veterans Mesothelioma schemeof £140,000. We also assisted his wife Ann in claiming CarersAllowance which resulted in maximising the familyentitlement to Pension Credit. As the £140,000 is a personalinjury compensation payment their entitlement to pensioncredit, housing benefit and council tax payment stayed inpayment as a capital payment is disregarded. The lump summeant Anthony was able to help his daughter pay for herwedding and buy himself a new car.
Case Studies from the year under review
13
“I would not have knownwhere to start without yourhelp. It was straight forwardadvice which was simple toimplement in gaining all my
allowances.” FeedbackQuestionnaire 2017
100 % of respondents toour questionnaire stated
that they were verysatisfied with our serviceand would recommendour service to others.
“The help that I received from Derbyshire Asbestos Supporthas been excellent. The knowledge and experience that they
provided in helping me sort through all the forms wasinvaluable. Having this kind of support from Derbyshire
Asbestos Support Team when you are not well is soimportant, I cannot thank them enough.”
Feedback Questionnaire 2017
Civil compensationWe also advise about Civil Compensation through Trade Unionmembership or former Trade Union membership, or our expertpanel of Solicitors, who act for Trade Unions and, therefore, havedetailed knowledge and understanding of working conditions. Wewere pleased to welcome Leigh Day Solicitors onto our panel. Ourpanel now consists of Graysons, Thompsons, OH Parsons andLeigh Day.
We also assisted Harry in claiming Pension credit which alsomeant full entitlement to Council tax benefit. Sadly Harrypassed away before an award for Industrial InjuriesDisablement Benefit and lump sum payment could be made, soour Bereavement Support Worker is continuing to support thefamily to claim Harry’s full entitlement.
14
Table of benefits & compensation
Key:Other diseasesIIDB: Industrial Injuries Disablement Benefit.WCS: Workers’ Compensation Scheme (Government Lump sum).2008: The 2008 Government Lump Sum scheme to pay victims of mesothelioma where the source of exposure is notlinked to work or for another reason was not eligible for the Workers’ Compensation Scheme.PIP: Personal Independence Payment.AA: Attendance Allowance.Constant Attendance Allowance: Payable with Industrial Injuries Disablement Benefit when a person has beenawarded 95% or above. Can be paid at higher rates than the care component of PIP and AA.
Area Disease IIDB WCS 2
Derbyshire Mesothelioma/Lung Cancer £109,266 £140,794 Other diseases £16,948 £68,773
Chesterfield Mesothelioma/Lung cancer £45,742 £92,628 Other diseases £1,748 £3,301
Bolsover Mesothelioma/Lung Cancer £13,104 £29,381
North East Mesothelioma/Lung Cancer £16,169 £27,045Derbyshire Other diseases £2,118 £5,152
Derby Mesothelioma/Lung Cancer £91,096 £162,476 Other diseases £20,565 £32,296
Leicestershire Mesothelioma/Lung Cancer £26,208 £42,714 Other diseases £28,772 £9,563
Nottinghamshire Mesothelioma/Lung Cancer £31,389 £569,315 Other diseases £28,352 £75,699
Northamptonshire Mesothelioma/Lung Cancer £242,583 £452,067Other diseases £7,863 £5,779
Other areas Mesothelioma/Lung Cancer £129,186 £338,950 Home visit took place Other diseases 16,235 £41,198
No Home Visit Other diseases £7,426 £15,093
Lincolnshire Mesothelioma/Lung Cancer £360,520 £696,945 Other diseases £1,614 £6,102
Total £1,478.904 £2,815,271
15
The table illustrates the amount of benefits and compensation DASThas helped people with asbestos related diseases to recover. Thebenefits include Industrial Injuries Disablement Benefit (IIDB). Thebenefit is awarded specifically because victims have a disease causedby work. Other benefits relate to all benefits including means testedbenefits, Employment and Support Allowance and War Pension.
continued
2008 Scheme PIP/AA CAA Other Compensation Total
£35,014 £24,560 £39,401 £142,500.00 £491,535 £3,826 £89,547
£82,161 £6,270 £299,431.00 £117,481.30 £643,713 £5,049
£7,268 £2,184 £8,773 £60,710
£3,374 £46,588 £7,270
£8,745 £12,255 £735,247.83 £1,009,820 £64,349 £117,210
£4,940 £122,276 £254,816 £450,950 £38,335
£105,189 £43,755 £28,224 £265,702 £1,166,399 £2,491,973 £2,172 £2,884 £27,500 £136,607
£32,553 £44,856 £511,500 £1283,559 £13,642
£84,332 £18,458 £48,764 £544 £868,565.45 £1,488.799 £57,433
£22,519
£40,365 £61,477 £101,269 £829,314 £694,612.49 £2,784.502 £7,716
£347,061 £213,572 £276,953 £1,532,750 £4,582,971.53 £11,247,483
16
The table also illustrates the amount recovered under theGovernment Compensation Schemes and Civil Compensation.Civil claims can take several years to finalise particularly forbenign conditions such as pleural thickening. Over the year wehave been instrumental in recovering £11,247,483.
Group SupportAt DAST we believe that bringing families together to share theirexperiences is so important. DAST attended a meeting where aGP representative mentioned the idea of an “expert patient” andthis we believe is important. Patients with mesothelioma canshare their experiences of trials, chemotherapy and day to dayliving with cancer or another asbestos related disease.
Coffee mornings Over the last year wehave organised coffeemornings throughout theEast Midlands includingChesterfield, Derby,Scunthorpe, Newark andBoston. We realisethere are other areaswe need to visit and, therefore, next year we will also have aprogramme of coffee mornings throughout the East Midlands.The coffee mornings are open to all patients and carers. At thecoffee mornings we invite along a variety of speakers to supportthe physical and mental wellbeing of patients. This year thesehave included an Art Therapist, Lung Cancer Nurse Specialistsand an interactive speaker where people joined in and had fun.This gives patients the opportunity to enjoy the morning in arelaxed atmosphere.
“A very inspiring presentation and useful to know something like Art Therapy can help.”
Coffee morning feedback questionnaire 2017
Art Therapy
17
Mesothelioma in the Midlands As well as the coffee mornings, we once again linked withAsbestos Support Central England (formerly West Midlands) toorganise “Mesothelioma in the Midlands.” This event not onlybrings patients, carers and bereaved families together but alsogives them the opportunity to ask questions of renowned expertsin the field of mesothelioma treatment and research. This yearthe event concluded with music therapy and a local singer fromthe West Midlands area.
Social EventsIt is always good to seefamilies enjoyingthemselves, not thinkingabout their illness or thesituation they findthemselves in due to afamily member’s illnessor death. Therefore, inthe year under reviewwe organised two social events. Firstly, the Christmas Social2016 and our Annual Vintage Tea. At both events we invited“Jayne Darling” a local vintage singer to entertain everyone. TheVintage Tea this year was held in September in the marquee atthe Badger Pub, Brockwell, Chesterfield. A lovely spread ofsandwiches and scones were laid on by The Badger managementas well as tea, coffee and cakes supplied by the Co-op. Again the
event was wellattended and receivedgood feedback. At bothevents we were able toraise funds for DAST.
“Very enjoyable”Feedback 2017
Vintage Tea: pictured left to right, Joanne Gordon, SarahWalters, Shay Boyle and Joanna Reeve.
Vintage Tea: pictured left to right, Jayne Darling andShay Boyle.
18
NewslettersThroughout the year we have been producing newsletters,including our e-newsletter and bereavement support newsletter.If you wish to receive our e-newsletter please contact SarahWalters at [email protected]
An untimely death as a consequence of anasbestos related disease has a devastatingimpact on loved ones left behind.
The normal grieving process is oftencomplicated by intense anger and fear.Anger that ‘just going to work’ has causedit; that asbestos still remains at large inmany of our public buildings and privatehomes; and fear that other members of thefamily might yet be affected at a futuredate.
Following a successful funding bid to The Big Lottery, DAST wasable to launch a Bereavement Support Service in August 2015.The funding, for three years, enabled DAST to employ aBereavement Support Worker to continue to offer support andassistance to bereaved families.
In the past 12 months we have been notified of 139 deaths froman asbestos related condition, which we have responded to. Thatis 139 families devastated, angry and often feeling isolated intheir grief. Furthermore we have supported a total of 162bereaved persons, with some people coming to us for support whohad been bereaved years previously.
Jo Reeve, BereavementSupport Worker
Bereavement Support
Case Study - One to One Support & Advice Case Mr C aged 49, was referred to the service by the DWP, following thedeath of his partner of 14 years from Peritoneal Mesothelioma atthe age of 44, just 2 weeks after her diagnosis. She left twochildren aged 4 and 11 years. Ms C had previously been diagnosedwith cervical cancer and Mr C had given up work to be her carerduring her treatment which was successful.
They were expecting the all clear at her hospital appointmentwhen they were given the devastating news that she now hadperitoneal mesothelioma. Because the couple had never marriedMr C was not eligible for Bereavement Benefits and both the ChildBenefit and Child Tax Credits were in Ms C’s name.
19
“I’d like to say thank you to you for the work you’re doingfor the Bereavement Support Service. For me, the supportfrom DAST throughout our journey was fab and it was greatto have somewhere to turn when we had questions to ask.Once it got to October 2013 though, the support had to stop
because there wasn’t any ‘after support available’.
I felt alone, no longer part of a support network and didn’tknow where to turn for specialised personable bereavementsupport where the word mesothelioma is understood and the
effects of such a disease are also understood so do not need to be explained.
Now that DAST provide bereavement service, it has nowbecome a 360 degrees organisation that has the capacity to
provide support for the whole journey.
I wish it had been available in 2013 when I desperatelyneeded that support and somewhere to turn.
Lauren Mellor, Bereaved through Mesothelioma
The support we were able to give Mr C was both practical andemotional. Posthumous benefits claims were made on Ms C’sbehalf, with the Workers Compensation going into a trust fundfor her dependant children. This included two children from aprevious relationship. We assisted Mr C in accessing asolicitor to set up a trust fund and liaised with the DWP on hisbehalf. We also assisted him in Child Benefit, Child Tax Credit,Income Support and Housing Benefit claims.
We were able to liaise with his landlord regarding rent arrearsso safeguarding their home and assist with charitable grantapplications. Our emotional support extended to Mr C and hischildren and helping him to work out how best to answertheir questions and talking to them with him. We also spoketo the local Parish Church, with Mr C’s permission, who arenow offering support to both him and the children. Ourinvolvement with Mr C has continued for some 11 monthsand has been very complex in regard to his benefits and debtmatters. Mr C is currently on Employment Support Allowancebut is now feeling in a better place and hopes to find work inthe near future.
20
Lighthouse GroupsA new development in the past twelve months has been theintroduction of Bereavement Support Groups. The groups wereformed after consultation with bereaved service users atinformal Coffee & Chat events in different locations across theregion. Those who attended found them helpful and expressed aninterest in regular informal meetings. The first group was set upin NE Lincolnshire, first meeting in Grimsby and then moving toCleethorpes. It was the members of this group that suggested‘Lighthouse Group’ as a name. They felt that for them, DAST was
“The best thing about your service has been your compassionand understanding of grief, throughout its stages.”
Feedback Questionnaire 2017
21
like a lighthouse shining a light on the dark and oftentreacherous waters of grief. Other groups were then initiated inLeicester, Nottingham, Derby and Scunthorpe.
The Lighthouse Groups acknowledge that everyone’s experienceof losing a loved one is different and each journey will be unique.But within the group, those who are bereaved can take refugefrom a world that doesn't always stop and listen to them as theirhearts struggle in the aftermath of the death of someone soimportant. Within the groups they can find a safe place to giveand receive help, support and comfort with others whose liveshave been turned upside down bya bereavement.
In the past 12 months, a total of61 people have attended theLighthouse Groups which meetmonthly. The format is aninformal, open group wheresomeone may come just the oncefor support or on a regular basis.We are witnessing great friendships forming and a wonderfullysupportive network emerging which is helping to reduce thesense of isolation and loneliness many bereaved people feel.
VolunteeringA number of our volunteers have lost loved ones to mesotheliomaand other asbestos related diseases and it is this that hasmotivated them to support DAST by raising awareness of thedangers of asbestos, fundraising and becoming one of ourCommunity Champions. Mr D’s story is highlighted overleaf.
“I have definitely feltsupported by the DASTteam and have reallybenefitted from all
the help”. Feedback Questionnaire
2017
“Thank you so much for all the help and support you havegiven us since Dad passed away. Mum would not have beenable to attend the inquest without you being there. You have
supported and reassured us every step of the way”. Feedback 2017
22
Case Study Mr D aged 60, contacted us by phone 3 days after his wife,aged 58, died from Mesothelioma. Our involvement was to giveboth practical and emotional support. Mr D asked us to closedown the DWP benefits and to visit him. On our first visit hissister-in-law and step-daughter were also present. Afterchatting about practical matters and who needed to be told,we were able to explain the coroner’s process and whathappens at an inquest. We were also able to give advice onapplying for probate and provide guidelines and applicationforms. Mr D had a very supportive family but felt at a loss ashe had also recently taken early retirement. We kept in touchwith Mr D and invited him to various events and he attendedseveral Lighthouse Group meetings. Some weeks following hiswife’s death he asked about becoming more involved with thework of DAST. We chatted about volunteering opportunitiesavailable and left him a volunteer pack and application form.
Five months following Mrs D’s death we accompanied Mr Dand his family to the inquest, the conclusion of which wasthat she died from the industrial disease - mesothelioma. MrD now felt ready to involve himself more in DAST as he feltthat he wanted to give something back. He attended aworkshop for Community Champion role. We also receivedexcellent references as to his suitability for the role. Mr D hasbeen actively promoting the work of DAST in his localcommunity, raising money with his family and speaking toboth local and national media. His role as CommunityChampion involves him being the ears, eyes and voice forDAST within his local community and local businesses. He isnow a regular member of one of the Lighthouse groups andfollowing further training will take over facilitation of thatgroup from our Bereavement Support Worker with continuedsupport from her.
The Female Face of the Asbestos CatastropheWe held anexcellent event forActionMesothelioma Daythis year at theRoundhouse inDerby. The maintheme this yearwas highlightingthe bravery ofthose who havepioneered the wayfor others to access truth and justice both legally and medically.The inspiration for the event came as a result of having beendonated a limited edition picture of the “Female Face of theAsbestos Catastrophe.”
The artwork was produced by a Colombian artist, who was somoved when he read an original paper by Laurie Kazan-Allen(International Ban Asbestos Secretariat) highlighting the 23
Joanne Gordon
Action Mesothelioma Day 2017
Post ChatThanks to a grant from Royal London, DAST can now enhance ourBereavement Service with a new penfriend scheme launched inOctober 2017. Some people find it difficult to talk or attend meetingsbut feel more comfortable writing their feelings down. So the schemehas been launched and will match people in a similar situation tobefriend via an exchange of letters, initially through DAST.
“Having been a carer of someone suffering with an asbestosrelated illness and passing away from mesothelioma I feel ableto help to support DAST and others in a similar position”
bravery of a number of women who had been affected bymesothelioma. It was donated to us by Christine Winters(Formerly Independent Asbestos Training Providers) and framedwith thanks to Thompsons Solicitors. Joanne Gordon gave a talkabout the women depicted in the artwork and the importance oftheir stories for those diagnosed with mesothelioma today.
The Stories of DAST’svictimsThroughout the years at DAST,we have been amazed andhumbled by the bravery ofvictims and their families.Dave MacGregor who sadly losthis wife, Susan, tomesothelioma, told their storyto both local and nationalmedia. Susan’s only exposureto asbestos is thought to be through contact with her father’soveralls. Susan was diagnosed with mesothelioma aged 57. Daveagreed to speak out to raise awareness to prevent other familiesexperiencing the same tragedy as they had. Dave’s storyreached both local and national television.
Sarah Walters, DAST’s funding development worker had writtena number of monologues based on stories from victims andfamilies in response to questionnaires from our ‘Heritage LotteryProject.’ These were read out by Jo Reeve and Shay Boyle. Sarahalso read out the winning poem from our competition. Anotherway in which we can get victims’ stories to be heard.
Action Mesothelioma Day SpeakersAttending our Action Mesothelioma Day event were Japanesefamilies. Mrs Kahoru Udagawa and Mrs Miyuki Nomura spokeabout their experiences. We learnt that we have the same issuesas the two Japanese women whose stories were similar to thoseexperienced by widows in the UK.24
Sarah Walters reading the Winning Poem
25
Other speakers included June Morley and Sue Bates, Lung CancerNurse Specialists from Kings Mill Hospital. Our keynote speakerwas Jason Addy, Campaigner.
The Truth behind the liesJason is the manbehind the ‘SaveSpodden Valley’campaign establishedto fight proposals tobuild on the site of theformer T&N asbestosfactory in Rochdale.
https://en.wikipedia.org/wiki/Spodden_Valley_asbestos_controversy
Over the past few years Jason has uncovered damning evidenceof the lies, counter lies, cover-ups, denials used not just by T&Nand its successors, but by the other major asbestos producingfirms and their 'friends'. He has also uncovered many disturbingissues about the involvement of the medical profession,journalists and politicians, nationally and locally, who havedefended and supported the asbestos industry.
In particular Jason referred to Julian Peto, whose work isfrequently quoted today. “In a friendly handwritten 1977 letterto a T&N senior manager, Julian Peto boasts of being shouteddown at a meeting and accused of being “a capitalist lacky”. Thissuggests a bond of camaraderie between the cancer scientist andthe asbestos corporation in a way that dismissed the concerns ofthe general public.”
Jason backed his opinion by showing us documentary evidence.
“Another document is a 1993 transcript, drafted in a pre-digitalage, of a national BBC radio broadcast about health concernsregarding asbestos in the environment. Julian Peto’s opinions
Jason Addy
were clearly expressed – he believed that there was no risk fromasbestos products in buildings. He suggested that such claimswere scientifically unfounded and “hysterical.” Such opinionsremain exceedingly useful to those denying liability forenvironmental asbestos exposure. Similar claims are still beingmade in today’s chrysotile asbestos industry.”
Paper Dolly sponsorshipVictims and families sponsored paper dollies made by RachelCarter and these were displayed inside paper replicas of the ‘TheReflection Rose’ (a rose registered in the name of DAST). Rachelmade 209 paper dollies representing the number of people wehelped and supported in 2016. The blue and pink ribbons wereused to illustrate the ratio of men to women we helped andsupported throughout the year.
A total of £2,132 was raised, anamount totalling £894 wasdesignated by victims andfamilies for Mesotheliomaresearch.
The Stories behind the artworkimage of the Female Face of the Asbestos Catastrophe26
Paper Dollies
Nelly Kershaw was the first named victim of asbestos disease in1924. Nelly was exposed when she started work at the AsbestosRochdale Factory aged only 15. Yet 93 years later people are stillbeing exposed to asbestos in homes, public buildings and schools.
Gina Lees, who also featured in the artwork image, was aprimary school teacher who died aged 51. After her death, herhusband, Michael, campaigned for over 15 years to raiseawareness about the difficult issue of asbestos in schools, whichevery child must attend.
Alice Jefferson featured in a landmark documentary thatreached over 6 million viewers. It lead to questions being askedin Parliament and action taken.
June Hancock took a test case, she was the first person to claimsuccessfully against a company for environmental exposurehaving grown up in the shadow of an asbestos factory in Armley.Her mother had also died of the disease so when she wasdiagnosed herself she knew what was ahead but chose to fightand take on the might of the asbestos industry. There is now aMesothelioma Fund established in her name to fund researchinto mesothelioma.
27
Case Study - DAST’s female case historyFrom 16th September 1940 until 15th August 1941 Anna wasemployed by Boots Company Plc as a Gas Mask Operative inNottingham. Anna worked in an open plan factory whichmanufactured the gas masks, the canisters of whichcontained asbestos. She worked in close proximity to placeswhere other employees were engaged in processes wherebyasbestos was inserted into the canisters of the gas masks.These employees were just along the production line to whereAnna worked.
Anna’s family were able to make a successful civil claim andincluded in the claim was Anna’ s hospice care. A sum of£5,846.95 was given to the John Eastwood Hospice.
DAST was proud to welcome four Japanese visitors toDerbyshire.
The visitors were all part of the 'Japan Association ofMesothelioma, Asbestos-related Disease Victims and TheirFamilies.' They, along with sixteen other members of the JapanAssociation, were visiting the UK to find out more about ActionMesothelioma Day. Four visitors attended our ActionMesothelioma Day event in Derby, whilst the others attendedeither Manchester, Liverpool, Birmingham or Sheffield. Prior toAction Mesothelioma Day on 6th July we invited them to attenda welcome event at the White Swan Public House in Chesterfield.
Joanne Gordon welcomed our guests to Chesterfield and thengave a brief talk on the activities of DAST and the Forum.
The universal fight for justiceJoanne then invited Hiroatsu Narita to tell us about thesituation in Japan. Hiroatsu is from Nagoya (Nagoya is thelargest city in the Chubu region of Japan. It is Japan's thirdlargest incorporated city and the fourth most populous urbanarea. It is located on the Pacific coast on central Honshu. It is the28
Japanese Delegation Welcome
Japanese visitors and their interpreter
capital of Aichi Prefecture and is one of Japan's major ports. It isalso the centre of Japan's third largest metropolitan region,known as the Chukyo Metropolitan Area. As of 2015, 2.28million people lived in the city, part of Chukyo MetropolitanArea's 9.10 million people). Hiroatsu Narita is the Secretary ofthe Tokai Branch of the 'Japan Association of Mesothelioma,Asbestos-related Disease Victims and Their Families'.
This group was established in February 2004 and has 18branches with 900 members.
It very much came across that they have a similar structure aswe have here in the UK where the victims support groups areworking with the trade unions and the like-minded legal people,and that they are fighting the same issues as we are, theinjustice; ignorance; opposition to compensation claims and astruggle to get government fully involved.
Mrs Kahoru Udagawa.Mrs Udagawa is a BoardMember of the NationalNetwork and of the TokaiBranch. She told us thather husband had died ofMesothelioma in 2001 atthe age of 64. He was ateacher at a girls’ schoolfor 40 years. She went onto inform us of her fightto get justice for herhusband's exposure toasbestos. Appealing forcompensation from thesystem as it existed then, she was informed that because noasbestos was 'formally' listed and he had not worked withasbestos, she could not claim. It was not until 2006 when somedemolition took place at the school that it was declared anasbestos site. She then re-filed her claim. We were told that she
29
Mrs Kahoru Udagawa
has been refused, for various reasons, and is even now, awaitinga response from the High Court.
The final part of the event was for Jane Foggin to sing heradaptation of the poem "Forget me Not" written by Audrey Carlin.
“The mission to Chesterfield and Derby by Hiroatsu Narita”
Hiroatsu Narita (Secretary for Tokai Branch of JapanAssociation of Mesothelioma, asbestos-related Disease
Victims and their Families)
“I joined JapaneseDelegation for UK withmy wife Miwako. Afterfinishing all schedulesin Manchester, I andmy wife went toChesterfield and Derbywith two wives ofasbestos victims whowere Kahoru Utagawaand Miyuki Nomura tojoin programs of Action Mesothelioma Day by DAST. Utagawa’sand Nomura’s husbands died of mesothelioma.
Our VisitOn July 6, we arrived at Chesterfield and joined the eveningmeeting at the White Swan. Joanne Gordon explained aboutactivities of DAST for us. The Exhibition of the house model withindications of asbestos containing materials was very impressivefor me because residential buildings containing asbestosmaterials are also a very serious problem in Japan and a lot ofpeople do not know how dangerous it is. 30
Report from the Japanese Delegation about their visit to DAST
Mrs Miyuki Vomura
31
In Japan, I normally meet construction workers who have beendiagnosed with mesothelioma so, while I was listening to a song“Forget me Not”, I felt that it was like a Japanese constructionworker’s life. The circumstances in which British and Japanesevictims are exposed to asbestos is very similar.
Action Mesothelioma DayOn July 7, we attended Action Mesothelioma Day at DerbyCollege. First, I heard a brief talk about the ‘Female Face ofBritain’s Asbestos Catastrophe’. According to Joanne Gordon,the current situation is that females diagnosed withmesothelioma are the third-wave of victims in the UK. I thinkthat Japan has faced the same situation. Recently, I met amesothelioma patient who was a housewife who lived nearformer asbestos factory in Nagano prefecture.
Secondly, I heard two short monologues which were stories about aschool teacher and a railway worker. Again I thought that thesestories were like the stories of Japanese teachers and other workers. Ifound that asbestos problems in the world are homogeneous.
Keynote speech by Jason Addy gave me overviews of schemes ofbusiness circles and specialists in the UK. It was surprising tohear about a medical specialist who had a cosy relationship withan asbestos manufacturing company and has still got influencein the media today. Furthermore, spying on the asbestos victimsupport group movement by the asbestos industry wasunbelievable to me. In fact, it was difficult to meet Russianprofessional asbestos lobby in Japan. Through Jason’s keynotespeech I could understand the very real fight with theprofessional asbestos lobby happening in the UK.
Sharing Our StoriesIt was meaningful to share Mrs Udagawa’s and Mrs Nomura’sstories with people in Derby College. At first, Joanne and I did notexpect their speeches to be so long. But, they really wanted totalk about their experiences to people at Action Mesothelioma
Day. I thank all thepeople attending andDAST for listening tothem share theirexperiences. It wasimpressive that aftertheir speeches, a fewpeople talked to themand hugged them.Utagawa’s husband wasa junior high schoolteacher for 40 years and Nomura’s husband’s exposure toasbestos was while he was working at a small building materialsfactory when he was a university student.
We all have to do a lot of things to support victims and theirfamilies and to achieve a world-wide ban of asbestos.” Report byHiroatsu Narita.
The Importanceof the dayWorkers’ Memorial Dayis a very important day.According to the Healthand Safety Executive,asbestos-related diseasecontinues to be thesingle greatest cause ofoccupational death inGreat Britain estimatedto cause over 5500deaths per annum.
32
Volunteer Eve Dudden with Mrs Udagawa
Workers' Memorial Day - Dave Trigg (left) with organiser'Nobby' Styles
Workers’ Memorial Day
DAST’s involvementDAST believes that it is important that we join with other groupsand Trade Unions to commemorate the day. Our Chair, DaveTrigg, attended events in Grimsby, Cleethorpes and Imminghamand once again reported that the events had been very poignant.
Dave MacGregor, our DAST champion, attended an event inMatlock. His personal story illustrated the importance of theday and the significance of the motto “Remember the Dead –Fight for the Living.”
Staff, volunteers and DAST supporters were also involved withhighlighting the importance of health and safety along with theTrade Union Safety Team who had launched an innovative 3Dartwork depicting hazards in workplaces including asbestos(lagged pipes).
The general public were encouraged to take notice of theworkplace hazards as they crossed the bridge on the artworkwhich, when viewed through a camera, gave a 3D effect. Theywere then asked to share their photographs on social media withthe hashtag #safeworkplaces.
33Eva Dudden
The Asbestos Victims Support Groups’ ForumDAST is proud to be an active founder-member of the AsbestosVictims Support Groups’ Forum (AVSGF) which is an umbrellaorganisation representing asbestos support groups. The Forum’smain purpose is to work collectively and collaboratively toprovide one voice for asbestos victims.
Benefit Office ClosureThis year the AVSGF have been successful in campaigning to stop theclosure of the Barrow Industrial Injuries Disablement Benefit Centre.
All asbestos related disease Industrial Injuries DisablementBenefit Claims as well as the Government lump sum schemes areadministered from the Barrow Office. Earlier this year theGovernment planned to close this office. Along with PCS union,the Asbestos Victims Support Groups’ Forum began a campaignto stop the closure. We were very concerned that if the officeclosed a wealth of expertise would be lost. Over the last few years34
Campaigning
Forum Campaigning
we have developed good relations with Barrow, the staff have anunderstanding of the difficulties faced by asbestos relateddisease victims. No other Department of Work and Pensionsoffice has ever administered the Government Lump SumSchemes and this was of particular concern for all groups if thisexpertise was lost. Furthermore, a move to a new office toadminister claims could cause unnecessary delays and anxietiesfor victims at an already difficult time following a diagnosis ofan asbestos related disease.
In July we learnt that the campaign had been successful.
Jackson ReviewThis year the Forum has also been successful in challenging andexplaining the impact of proposed changes to the Civil Justicesystem on Mesothelioma and other asbestos related diseasevictims.
Lord Jackson published his latest report (Review of CivilLitigation Costs: Supplemental Report – Fixed RecoverableCosts), which was part of his ongoing review. The aim of thereview is to simplify and cut the costs of civil litigation.
Proposals mentioned last year included introduction of fixedrecoverable costs (the costs that the plaintiffs can recover fromdefendants if they win their case) for personal injury claimsworth up to £250,000. The Forum believed such changes wouldseriously disadvantage asbestos victims, pitted against powerfuland well-resourced defendants. Graham Dring, Chair of theForum and members of the Manchester’s Living well withMesothelioma Group met with Lord Justice Jackson at the RoyalCourts of Justice to raise concerns.
Lord Justice Jackson listened to the concerns raised by theForum and others and the good news is that claims for asbestosdiseases will not be subject to restricted costs in the proposalsoutlined in his report.
35
36
Setting up the NetworkEvery three months community and voluntary groups, clubs andorganisations from the health and social care sector acrossNorth Derbyshire get together at the Agricultural BusinessCentre in Bakewell for a morning of information sharing,debating and networking. North Derbyshire Voluntary Action(NDVA), the umbrella charity which represents and supports thehealth and social care voluntary sector in Derbyshire, organisesthis event.
Joining togetherIn recognition that there is much community-based good workand self-help related to cancer within Derbyshire, membersdecided at the February 2016 NDVA Forum to form an NDVA“themed group” on cancer, to explore whether there would bebenefit in these groups and organisations working more closely
Cancer steering group, pictured from left to right: Audery Carlin, Jemma Glossop and JoanneGordon.
Networking in Derbyshire
together and sharing information and experiences on a regularbasis. The group decided to name itself the ‘Derbyshire CancerSteering Group’ and, supported by Macmillan, it has metregularly for the last 12 months. It exists to improve the lives ofpeople affected by cancer across Derbyshire by improvingcommunication and information sharing amongst voluntarysector and support groups and influencing decisionmakers/raising the profile of those voluntary sector and supportgroups within statutory services.
Founder members of the Derbyshire Cancer Steering Groupinclude the Derbyshire Asbestos Support Team (DAST), NorthDerbyshire Voluntary Action, Nenna Kind, Volunteer CentreChesterfield and North East Derbyshire and Macmillan CancerSupport. Other cancer support groups are welcome to join us.
We believe it is important to have a Cancer Support Groupsnetwork to enable better information and support for all cancerpatients and their families.
Our first eventIn June last year the group applied for a Macmillan UserInvolvement Grant so it could organise three outreach events tobring together community support services for people affected bycancer. These outreach events have been organised to take placeat different locations across the county. The first of these eventswas held in Bolsover in October 2017 with over 30 peopleattending for advice and information.
37
38
l Big Lottery Fund
l Unite the Union
l Unite EM/DE40Manufacturing &Rail
l Unite RetiredMembers
l Unite DerbyshireArea ActivistsCommittee
l Provincial GrandCharity ofDerbyshire
l DIPT Group
l Royal London
l Leeds BuildingSocietyCharitableFoundation
l William & MabelMorris Trust
l BromheadMedical Charity
l Sir JohnSumner’s Trust
l Albert HuntTrust
l Asda Foundation
l DerbyshireCounty Council -DerbyshireTrustedBefriendingNetworkMicrogrants
l UKATA
l Barton Petroleum
l Co-op LocalCommunity Fund
l Wilkinsons
l Maud ElkingtonCharitable Trust
Thank YouThank you to the following for their support this year:
Fundraising
39
How to Donate to DASTl Please consider leaving DAST a gift in your Will. Legaciescan really make a difference to the levels of service that wecan offer in your area. They can also enable us to organiseevents where we raise awareness of the ongoing dangers ofasbestos.
l You can pledge to make a regular monthly donation bysetting up a Standing Order with your bank. Simply fill inone of our forms. These can be downloaded from ourwebsite, or call 01246 380415 and ask for a Standing Orderform to be posted out to you.
l Make an online donation through VirginMoneyGiving, TheBig Give or BT MyDonate. DAST have accounts set up witheach of these websites - search for Derbyshire AsbestosSupport.
l Join in our annualWalk a Mile forMesothelioma event -plan your sponsoredone mile walk forSeptember 2018 now!
l Organise your ownfundraising event –we can guide you andsend you a sponsorpack.
Thank you to everyonewho made a donation toDAST in 2017 - yoursupport is muchappreciated by all atDAST.
William Bears for sale.
40
Thank you to all our runners and walkers!Thank you to Alix McCaffrey whoraised nearly £1000 for DAST byrunning the Liverpool Marathon inMay. And thank you to everyonewho took part in this year’s Walk aMile for Mesothelioma.
Please see back cover for photos ofour Walk a Mile Events.
Alix McCaffrey at the Liverpool Marathonin May
Marilyn Bailey (Centre)with friends
Sara Burns and Elis
Mr Graham and family
41
Poetry CompetitionEarly in the year we held our first poetry competition. This had thedual purpose of raising money for DAST and enabling entrants toshare their thoughts on how asbestos has affected their lives. Thewinning poem, written by Pamela Smith of Lincolnshire, was readout at our Action Mesothelioma event in July.
S.O.S.A dangerous killer stalks our landUnseen, invisible, a silent hand
That protects from flames and searing heatBut beware of this preposterous cheat.
If undisturbed it does no harm,Disturb it – then sound the alarm –
Minute fibres pollute the airTo settle all around us, everywhere,
Invading the unsuspecting lungAnd there the damage has begun.
No symptoms yet, though slow but sureComes the cancer, and there is no cure.
Where and when were the fibres about?Who can we blame? What can we find out?So many questions and it comes as a shock
That the once-prized asbestos has caused such havoc.
In roofs and in walls the danger will lurkWhere children are in school, in our places of work.
There is no peace of mind now that we knowAnd to protect the future, Asbestos must go.
Pamela Smith
42
Asbestos Heritage ProjectIn March 2017 we were invited byMansfield Museum to take part in theirHealth and Wellbeing Festival, whichran over two weeks. The AsbestosHeritage display was placed in themuseum for the duration of the festival,and we were invited to give a talk aboutthe dangers of asbestos in old buildingsand collectables.
The 100 Club CountsOur monthly lottery draw has now beenrunning for a year and has proved to be asteady success. So far it has raised almost £400 for DAST andgiven out the same amount in prizes. There are still somenumbers available to purchase – each number costs £1 permonth and you can buy them for 6 or 12 months. Contactsarah.walters@asbestossupport for information on whichnumbers are available and how to purchase them.
Sarah Walters - Mansfield Museum
43
Contact Details
DAST34 Glumangate, Chesterfield S40 1TX Telephone: 01246 380415
E-mail: [email protected]: www.asbestossupport.net
Facebook: Derbyshire Asbestos Support TeamFollow us on Twitter @DAST24
Co-ordinator: Joanne GordonBenefits Advisor: Natalie WoodwardFunding Development Worker: Sarah WaltersBereavement Support Worker: Jo Reeve
AcknowledgmentsWe extend our thanks and gratitude to all the voluntaryand professional bodies with whom we have worked, aswell as local MPs.
DAST is supported by the Trade Union Safety Team
A special thank you to our dedicated volunteers withoutwhom we could not sustain our level of help and support.
We would like to thank the Derbyshire UnemployedWorkers’ Centres for their support.
Designed by North East Derbyshire Council. 9030