DAST Annual Report 2015 - 2016

2

ContentsIntroduction 3-5

Background & History of DAST 5-8

Our service 9

Individual support 9-15

Table of benefits & compensation 16-17

Group Support 18-22

Action Mesothelioma Day 23-24

Mesothelioma, Fascination & Curse 25-28

Bereavement Support Project 28-31

Reflection and Celebration of life 32

Raising Awareness 33-35

Campaigning 36-38

Fundraising 38-40

Thanks 41

How to Donate to DAST 42

Contact Details and Acknowledgements 43

My involvement with DAST

Welcome to the 2015 - 2016 DAST AnnualReport. Thank you for taking the time

to read it, I hope that you find it interesting.

I have been involved with DAST for a numberof years now, and it is a privilege to be theHonorary Chairman. When I attend eventsrelated to asbestos issues it is a great feelingwhen people tell me just how high DAST isheld in their opinion for the work that isdone by the team.

I joined the fight for justice for victims of asbestos relateddiseases when first informed about the terrible consequences ofwrongful exposure to asbestos. I was told about how insurers, inFairchild v Glenhaven Funeral Services Ltd [2002] UKHL 22,sought to get out of their responsibilities, to compensate injuredparties, for their clients negligence.

I attended the inaugural Derbyshire Asbestos Support Teammeeting and immediately became impressed by its aims andobjectives. I have been involved ever since, ultimately beingelected Honorary Chair.

A very busy yearWe have seen another year of activity on all fronts, there has beenno let up in the number of people contacting us for help andassistance at the shock of having an asbestos related diseasediagnosed in the family.

On awareness and campaigning, the team have been very busyorganising the schools project and the Lincoln event, as well as thenormal programme of the one-day Conference – Mesothelioma in theMidlands, Action Mesothelioma Day and coffee mornings etc.

3

Dave Trigg

Introduction by Dave Trigg

We decided to replace the 'Steering Group' with a moreencompassing 'Supporters Group'. This is working well and I cansee it proving to be a good move in how we decide where we aregoing with our promoting of the DAST name and activities. Thebereavement side of our team is now firmly established andproving to be a well-received service.

In order to continue to support people diagnosed with asbestosrelated diseases as well as the Awareness Campaigns, we need tofind innovative ways to fundraise. The Walk a Mile event is nowwell established in the DAST calendar of events. DAST alsocontinues to make grant applications, our latest means we havea number of resources to support people diagnosed with asbestosrelated diseases. However, we cannot continue without yourdonations, for which we are very grateful.

Comments on the global Asbestos issuesOn to other issues around asbestos. A major issue of concern tome is that the chrysotile industry is continuing its claim that allproducts containing chrysotile asbestos are safe. I refute theseclaims, that they are safely manufactured, and they are safeonce in use. Any number of reasons can make them unsafe, bothduring manufacture, and in use. Some of these 'safe' asbestosclaims have come from, allegedly, trade unionists, from Braziland Russia. Donald Trump is also a pro asbestos supporter, herecently stated that "The anti-asbestos movement (in the US) isa conspiracy, rigged by the mob".

More PositiveOn a better note, over the past year I have heard four differentmedical experts on asbestos related diseases includingmesothelioma, speak on developments in the treatment ofasbestos diseases. I am happy to say that I can see some, thoughsmall, progress being made. I asked one if he could see the end ofthe 'tunnel', unfortunately he could not, just that we areprogressing, slowly, but in the right direction.

4

5

Thank you• My thanks go to the DAST Staff, Volunteers, Management

Committee, Steering and Supporters Groups. Any patientsand family members who have spoken out to tell their storyat meetings or to the media.

• Our Panel firms, Thompsons; O H Parsons and Graysons.

• Thinking of the major projects this year – thanks to MichaelLees. MBE for the diagram and notes for the School AsbestosAwareness Project. Also to 'TechsQUAD' for the work that theydo in making the presentations that go with our projects. TheUnite East Midlands Region whose generous donation enabledus to 'go' with the project

• 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 have sent donations and donefundraising for DAST.

THANK YOU

Dave Trigg, Hon Chair, DAST.

Dave Trigg speaking at Mesothelioma in the Midlands

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 continues today. By 2006 it was felt that, as the workload ofDAST had grown, we needed to move forward into charitablestatus in order to attract sufficient funding to take on anotherworker. Our application to become a registered charity wassuccessful and so in 2007 a successful application was made toMacmillan Cancer Support for funding so that we could employ afull-time Welfare Benefits Advisor.

In January 2008 Natalie Woodward, an experienced welfarebenefits advisor, joined the team, funded by the Macmillan grantand later the same year, Shay Boyle, who was at the time avolunteer, 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 for whichwe were and still are very grateful. As the team grew and withtheir specific roles in place, it gave Joanne time to develop andsteer the group forward. This culminated in DAST being afounder-member of the Asbestos Victims Support Groups’ Forum,

Background & History of DAST

7

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.

Welcome to New Volunteers and our Supporters Groups Our team would not be complete without our volunteers whoundertake a range of tasks including office support,representation at meetings, helping out at events and helping tosteer the organisation. A big thank you to all our volunteers.

We would like to welcome a number of new volunteers to DASTincluding Eve Dudden, who has been helping out at our eventsincluding Action Mesothelioma Day and Mesothelioma in theMidlands. Eve has also been very busy supporting our“Craftivism Project” by embroidering our hexagons to make abanner. The project is to raise awareness about mesotheliomaand asbestos related diseases through arts and crafts.

We have created a new role this year for community volunteers.Our community volunteers can help out on an ad hoc basis bytaking leaflets to GP surgeries or our Heritage Lottery Projectleaflets to museums.

Supporters GroupIt is important that the people we help and support have aninvolvement in steering the organisation. The Steering Group,established as part of the Macmillan Cancer Support Grant in2008, had served its purpose but we needed to change andinvolve more people. Therefore, this year we established theSupporters Group and to date have held two meetings. There aresome familiar faces on the Supporters Group including our ChairDave Trigg and Margaret and George Bailey. We would also like towelcome Brian Dickinson, Yvonne Burton who sadly lost herhusband to Mesothelioma, as well as representatives fromUKATA. UKATA set standards in asbestos training and ensuretheir members meet their standards. We thought UKATA wouldcomplement our aims in strengthening DAST’s future.

Asbestos Bereavement Support Steering GroupWhen Jo came into post, she also wanted to involve family membersaffected by bereavement to help shape the service. The foundingmembers of the group are Dave Trigg, Lauren Mellor, Helen Redfernand Lynne Wood. Unfortunately, Lynne and Helen, for personalreasons, have had to withdraw from the support group.

Call out We are looking for patients, carers and Trade Unionrepresentatives to join the Supporters Group which we hold inDerby as well as family members to join the BereavementSteering Group, which we hold in Chesterfield. If anyone readingthis report would like to be involved with the work of DAST,please contact us.

8

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 access towelfare benefits and compensation. We also act as a support group,maintaining communication with everyone through ournewsletters, as well as meetings and conferences. We raiseawareness about the dangers of asbestos as well as campaigning fora better future for those diagnosed with asbestos related diseases.

2006 was the first year of Action Mesothelioma Day, an importantday in our calendar when we raise awareness and the profile ofthe asbestos related lung cancer – Mesothelioma.

We continue to raise awareness about the dangers of asbestoswith our Asbestos in Schools project, the Asbestos House projectwhich identifies where asbestos may be found in the home, andour Heritage Lottery Project.

9

Our Service

Individual SupportWelfare 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 Industrial

10

Injuries 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 testedbenefits. We also act as an advocate and offer representation atTribunals.

During the year under review we have helped and supported 209people with asbestos related diseases (excluding visitsundertaken as part of the Big Lottery Bereavement Project) ofwhich 171 were diagnosed with Mesothelioma (terminal asbestoscancer) or lung cancer. Of those helped and supported 11% werefemales. Sadly, there seems a general upward trend in thenumber of Mesothelioma cases in women. Please see table 1.

Area Disease No Male Female 40-49 50-64 65-70 71-74 75-79 80+Derbyshire Mesothelioma/Lung 10 8 2 1 2 1 1 5

Other diseases 7 7 2 5Chesterfield Mesothelioma/Lung 7 7 1 2 2 2

Other diseases Bolsover Mesothelioma/Lung 5 3 2 1 2 1 1

Other diseases 1 1 1North East Mesothelioma/Lung 6 6 1 1 4Derbyshire Other diseases 3 3 1 1 1Derby Mesothelioma/Lung 10 10 1 4 1 4

Other diseases 2 2 1 1 Leicestershire Mesothelioma/Lung 4 2 2 1 3

other diseases 2 2 2Nottinghamshire Mesothelioma/Lung 43 37 6 3 7 11 7 9 6

Other diseases 16 16 3 1 2 5 5Northamptonshire Mesothelioma/Lung 21 20 1 2 2 6 7 4

Other diseases Other Mesothelioma/Lung 19 16 3 3 5 3 6 2Home visit Other diseases 1 1 1taken placeLincoln Mesothelioma/Lung 46 38 8 2 5 9 7 11 12

Other diseases 5 5 1 2 2 Other areas Mesothelioma/Lung No Home visit Other diseases 1 1 1

Totals 209 185 24 5 30 41 33 46 54

11

Case Study 2 - Challenging decisionsMr L was informed by the hospital that he was suffering fromasbestosis and, therefore, we made application for IndustrialInjuries Disablement Benefit. The medical provider statedthat, in their opinion, Mr L was not suffering from asbestosisbut pleural plaques and interstitial pneumonitis. They madethis decision without even looking at a chest x-ray. Therefore,we appealed the decision based on an error in law (the lawclearly states to make a decision on asbestosis a chest x-ray

Case Study 1 - Offering a Comprehensive ServiceMr M’s details were passed to us by his Lung Cancer NurseSpecialist. When we contacted Mr M his daughter informed usthat she had already made applications for Industrial InjuriesDisablement Benefit and a payment under the Workers’Compensation Scheme as her father had been exposed toasbestos whilst working as a Butcher in the family business.However, we made thorough enquiries to determine if he hadundertaken National Service as his date of birth indicatedthat he may have done so.

Mr M’s daughter informed us that he had been in the RAF. Wethen questioned if there had been any exposure to asbestosbecause he might be entitled to a lump sum under the newMesothelioma Scheme for Veterans. The hut in which Mr Mlived whilst serving in the RAF contained asbestos. Theheating system was a little boiler at the end of the hut whichwas lagged with asbestos. Mr M was awarded over £126,000.

Case Studies from the year under review:

continued

“Everything you have done for us has been 100%, wewouldn’t have known where to start if it hadn’t been foryou. Keep up the good work.” Feedback Questionnaire 2016

12

needs to be looked at.) We also obtained further medicalevidence from Mr L’s treating consultant who provided us witha letter confirming the diagnosis of asbestosis. The IndustrialInjuries Disablement Benefit unit sent the further evidenceback to their medical advisor who overturned the originaldecision and awarded benefit. Mr L was entitled to arrears of£874 and a weekly ongoing payment of £16.80 per week. Hewas also entitled to a lump sum from the governmentamounting to £3469.

“The advice and assistance you gave us removed all the worryof trying to find out what benefits we were entitled to andthe stress of completing the forms”. Feedback Questionnaire 2016

“Extra money helps us to payfor any help we need in thehouse and garden. The lump

sum has helped us feelsecure in case of an

emergency. The Blue Badgewas exceptionally useful.

Thank you”. Feedback Questionnaire

100 % of respondents toour questionnaire stated

that they were verysatisfied with ourservice and would

recommend our serviceto others.

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.

13

Case Study - Thompsons SolicitorsAlastair aged 63 was employed as a technical demonstrator atNorthampton College and had been for some 20 years. He hadevery intention of continuing work beyond the normalretirement age. He was a member of the Local HistoricalTransport Society and had been involved in the building ofmodel railways collecting model lorries and trucks displayingthese at various rallies and shows. He led an active life.

1 May 2014 he suffered a sudden onset of breathlessness.Following investigations carried out at hospital he was withinthree weeks diagnosed with mesothelioma.

Despite surgery and chemotherapy Alastair died on 9 October2014 some five months following the onset of his symptoms.

Alastair had previously worked as an apprentice and thenlater a qualified electrician for local electrical contractors.

His exposure to asbestos occurred mainly from the work ofothers. He would work in boiler houses carrying out electricalinstallation work alongside contract laggers who would mixand apply asbestos insulation to boilers and associatedpipework. In later years he worked in boiler houses of schoolsand he would have to lean and brush against asbestosinsulation lagged pipes disturbing the friable brittle asbestosinsulation lagging.

Alastair instructed Thompsons Solicitors who secured fundingfor his claim from his current trade union Unison. He had notbeen a member at the time of his exposure.

Regrettably the matter could not be concluded in his lifetime.Court proceedings were issued out of the Royal Courts ofJustice and the claim was settled out of court for the sum of£200,000 providing his widow and family with future financialstability.

14

Case Study - Graysons SolicitorsWe were instructed by Mr R in relation to his exposure toasbestos at Courtaulds in Grimsby. He was employed as acontrol room operator and employed by the firm between about1963 and 1966. As part of his job, Mr R was required to inspectmachinery and equipment at the plant. He was exposed to largeamounts of asbestos dust caused by maintenance repair andalterations to asbestos lagged pipework and was often in thevicinity of fitters who were carrying out that work, resulting inhis exposure to asbestos dust.

Mr R, who had enjoyed a full and active life, was diagnosedwith mesothelioma arising from his exposure to asbestos andsadly died as a result of that condition.

The claim was pursued by his widow, and Court proceedingswere issued. Judgment was entered against the employer andan early interim payment was obtained. The proceedings werepursued and ultimately successfully settled without trial for asum in excess of £100,000.

Case Study – O H ParsonsMr K was fit and healthy. He attended the gym 5 times a weekand also played bowls twice a week. He was therefore totallyshocked to be diagnosed with mesothelioma after initiallyconsulting his GP in June 2015 about a lump in his chest anda bit of a cough.

Mr K had worked in the construction industry as a joiner forthe majority of his working life. He had worked with asbestoswhen he was employed as an apprentice Joiner in Boston,Lincolnshire between 1954 and 1959. The company had twosites. The site where Mr K was based employed over 100 staffto build houses, factories, schools and shops. Asbestos waswidely used to fireproof the walls, doors and roofs.

15

Throughout his apprenticeship Mr K used hand tools to saw,drill, nail, screw and cut asbestos sheets. Others workednearby carrying out the same work. Contractors also workedabove him using power tools to cut asbestos roofing andasbestos sheets which caused the asbestos dust to fall on tohim. Mr K was not given any protection from the asbestosdust nor was he warned of the dangers of working withasbestos.

His former employer hadn’t traded since 2004 and were nolonger registered at Companies House. However, we traced theemployers’ liability insurers on cover during the period ofexposure and an application was made to the High Court torestore the dissolved company to the Companies Register.

Mr K has 3 grown up daughters. He was particularlyconcerned about one of his daughters who lives with him asMr K has been her sole carer for 13 years due to a disability,so we included a claim for the cost of replacement care.

Liability was then admitted by the insurers and an interimpayment of £50,000 made in November 2015. Medical and carereports were obtained and in May 2016, within eleven monthsof the diagnosis, we secured a settlement for Mr K in the sumof £325,000.

16

Table of benefits & compensation Area Disease IIDB WCS

Derbyshire Mesothelioma/Lung Cancer £99,724 £173,250 Other diseases £16,374 £32,619

Chesterfield Mesothelioma/Lung cancer £68,544 £103,925 Other diseases

Bolsover Mesothelioma/Lung Cancer £36,624 £105,798Other diseases £2,184 £43,731.00

North East Mesothelioma/Lung Cancer £31,920 £56,133 Derbyshire Other diseases £20,429 £26,630

Derby Mesothelioma/Lung Cancer £59,808 £135,071 Other diseases £2,420 £9,879

Leicestershire Mesothelioma/Lung Cancer £13,591 89,655 Other diseases £5,816 £13,551

Nottinghamshire Mesothelioma/Lung Cancer £371,980 £786,657 Other diseases £51,718 £72,095

Northamptonshire Mesothelioma/Lung Cancer £134,400 £293,362 Other diseases 1,075 £4,203

Other areas Mesothelioma/Lung Cancer £126,682 £453,270 Home visit took place Other diseases 1,075 £4,203

Outside the East Mids Mesothelioma/Lung Cancer No Home Visit Other diseases £3,630 4,543

Lincolnshire Mesothelioma/Lung Cancer £384,398 £680,858 Other diseases £11,289 £13,773

Total £1,446,134 £3,103,206

Key: Other diseases: include asbestosis and pleural thickeningIIDB: 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 not linked to work or for another reason was not eligible for the Workers' Compensation Scheme. PIP/DLA: Personal Independence Payment (used to be DLA) includes a care and mobility component. AA: Attendance Allowance - �care component only. Constant Attendance Allowance: Payable with Industrial Injuries DisablementBenefit when a person has been awarded 95% or above. Can be paid at higher rates than the care component for PIP and AA.

17

2008 PIP/AA CAA Other Compensation Total

£12,882 £14,772 £955,088 £1,255,716 £7,911.00 £56,904

£8,202.00 £15,120.00 £195,791

£13,455 £1,668.00 £8,064.00 £145,000 £310,609 £45,915

£36,234 £5,530 £16,968 £172,000 £318,785 £47,059

£6,417 £24,548 £667,122 £892,966 £12,299

£1,859 £716 £598,629 £704,450 £27,330 £46,697

£114,691 £72,629 £82,713 £124,726 £1,159,551 £2,712,947 £60,000 £183,813

£51,978 £20,664 £4,944 £563,310 £1,068,658 £5,278

£13,455 £21,785 £28,163 £128,527 £896,384 £1,668,266 £5,278

£156,000 £156,000 £8,173

£70,321 £72,381 £37,248 £8,712 £2,235,443 £3,489,361 £25,062

£248,156 £263,242 £248,976 £266,909 £7,635,857 £13,212,480

The table (page 16-17) illustrates the amount of benefits andcompensation DAST has helped people with asbestos related diseasesto recover. The benefits include Industrial Injuries DisablementBenefit (IIDB). The benefit is awarded specifically because victimshave a disease caused by work. Personal Independence Payment(PIP) is the new Government Benefit for care and mobility needs for

continued

people under 65. Attendance Allowance (AA) is for care needs ofvictims over 65. Other benefits relate to all benefits includingmeans tested benefits, Employment and Support Allowance andWar Pensions. The table also illustrates the amount recoveredunder the Government Compensation Schemes and CivilCompensation.

Derbyshire refers to South Derbyshire and Erewash, AmberValley and Derbyshire Dales. Civil claims can take several yearsto finalise particularly for benign conditions such as pleuralthickening.

Over the year we have been instrumental in recovering£13,212,480 in benefits and compensation.

Other individual supportWe can also offer a range of resources and support includinghand held fans, information from Macmillan Cancer Support andtravel insurance. We have had a number of requests throughoutthe year for this support.

18

Group SupportNewsletters Throughout the year we have been very busy producingnewsletters, including our e-newsletter.

Seventy-one per cent of respondents to our 2016 feedbackquestionnaire said the Newsletters were very helpful.

Meetings We continue to hold informal coffee mornings and afternoon teasthroughout the East Midlands. Now the bereavement supportproject is up and running, we have been able to offer all-dayevents by holding a coffee morning for victims of mesotheliomaand lung cancer followed by a ‘coffee and chat’ event for bereavedfamilies in the afternoon. These have worked out very well. The

coffee mornings/afternoon teas give people time to chat andshare their experiences in a relaxed atmosphere. We also inviteone of our panel Solicitors along to answer legal questions andthe local Macmillan Lung Cancer Nurse to answer clinicalquestions.

The Grimsby ‘Coffee and Chat’ for bereaved families hasdeveloped, as we anticipated, and now the group meet monthlyand have plans for the future.

Next year we plan to open the coffee mornings/afternoon teas toall victims of asbestos related diseases and invite a variety ofspeakers along.

19

Coffee morning

The best thing about the meeting was “meeting others andbeing able to chat to people with similar problems.”

Feedback 2016

Mesothelioma in the Midlands ConferenceOnce again we organiseda Conference withAsbestos Support CentralEngland (formerly WestMidlands) and it was ourturn to host it in the EastMidlands. This tookplace in Derby on 17thOctober 2016. We had anexcellent turnout with nearly 60 victims and families attending.The Conference was once again able to take place thanks to thesupport of Macmillan Cancer Support.

WelcomeEmma Vine,MacmillanInvolvement Co-ordinatorwelcomedeveryone to theConference andoutlined theongoingrelationship withDAST and Macmillan Cancer Support.

Information, advice and sharing experiencesThis was followed by an inspirational talk by Liz Darlison,Director of Services at Mesothelioma UK, who informed peopleabout the charity as well as providing really useful informationto ensure that patients can take control of their experienceswhen dealing with medical professionals. Other speakersincluded two interesting talks about research, one of which wasby Prof Luciano Mutti, Medical Oncologist and Chair of CancerResearch at Salford University. This was followed by Dr Kate20

Photo collage by Jan Sheppard

Mesothelioma in the Midlands conference, left to right; Shay Boyle,Sarah Walters, Audrey Carlin, Joanne Gordon, Natalie Woodward,Dave Trigg

Hill, MedicalResearcher who talkedabout the future ofmedical research andhelping patients andcarers to understandwhy research takesplace and the type ofresearch needed totreat mesothelioma and support patients with mesothelioma.Sheree Hall, Macmillan Lead Cancer Nurse, Chesterfield RoyalHospital, complemented these talks by outlining the supportavailable for patients in terms of what they can expect from themedical profession and that treatment should not only be aboutthe disease but treating the patient’s emotional, psychologicaland wellbeing needs as well.

Patient experienceMarilyn Bailey and DoreenSadler gave inspirationalaccounts of living withMesothelioma. Marilyn’shusband, Richard, has recentlybeen diagnosed withMesothelioma. Sadly thecancer journey is not new toMarilyn and Richard asRichard is a survivor oftesticular cancer which wasdiagnosed in the 1980s.However, Marilyn comparedtheir experience throughthe hospital system todaywith that of the 1980s andconfirmed that the help,support and information had greatly improved. Doreen and herhusband, Ian, are regulars at our events and it was good to see 21

Photo shows Prof. Luciano Mutti talking at Mesotheliomain the Midlands Conference

Marilyn Bailey

Doreen Sadler

them at Mesothelioma in theMidlands. Ian was diagnosedwith Mesothelioma in 2012.Doreen too felt their experiencesand the help and support offeredhad been very positive.

DAST’s ProjectsAs you will see later inthe Annual Report, wealso believe we have arole in raisingawareness about thedangers of asbestosrelated diseases.Therefore, Sarah ourFunding DevelopmentWorker, outlined anumber of our projects to raise awareness.

The event concluded with the song “Forget-Me-Not” performed bySimon Ball; originally written as a poem by DAST’s volunteer,Audrey Carlin.

Vintage TeaWe also held our Vintage Tea in June this year in Matlock. It wasvery well attended and not only acts as a fundraiser for DASTbut also a really enjoyable way for those diagnosed with asbestosrelated diseases and their families to relax and be entertained. Itis a great social event for everyone involved. We would like totake this opportunity of thanking Chesterfield College fororganising two students to help out on the day. 22

“A really interesting andinformative conference.There is great work goingon to care and get justice

for Mesotheliomavictims.” Conference

Feedback 2016

Heritage Presentation

“Really enjoyed the conference, just the right balance ofdifferent speakers, informative, educational, emotional, andlovely to connect with others.” Conference Feedback 2016

In 2006 The British Lung Foundation designated a date forAction Mesothelioma Day. This is very important for families,support groups and professionals supporting those diagnosedwith Mesothelioma. It gives us an opportunity to highlight theissues facing victims to the media and politicians. It is alsoimportant for bringing everyone together to share experiences,remember their loved ones and as an opportunity to call forACTION.

Action Mesothelioma Day 2016This year weorganised our eventat the Quad inDerby. This tookplace on 1st July2016. JoanneGordon, Co-ordinator of DASTintroduced ActionMesothelioma Dayoutlining why theday has hugesignificance forfamilies as well as raising the profile of this deadly legacy.Mesothelioma is the UK’s biggest scandal because it should neverhave happened but sadly profit was put before lives.Nevertheless, relatively little is known about this devastatingdisease which is why Action Mesothelioma Day is so important.

Our speakers included Dr John Hadfield, Consultant Physician atChesterfield Royal Hospital with a special interest in respiratorymedicine and Colin Smith who has been diagnosed withMesothelioma. Colin bravely told his story, which you can readoverleaf.

23

Colin Smith

Action Mesothelioma Day

“Forget-Me-Not” Song Before we proceededoutside for a period ofreflection with ourBereavement SupportWorker, Jo Reeve, the“Forget-Me-Not” songwas performed bySimon Ball. A numberof years ago, ourvolunteer AudreyCarlin, wrote the poemafter being inspired by the life stories of hard working people whohad been diagnosed with mesothelioma. Simon’s musicalinterpretation of the poem drew passers-by to listen to the wordsand a group of boys stopped by and applauded!

The song was also created into a video by Jack Todhunter and can be viewed on youtube atwww.youtube.com/watch?v=8_m-BixLHYQ it is well worthlistening to.

Reflection of LifeThis year we askedpeople to sponsormessage bubbles.Bubbles were chosenas a reflection on life,representingmemories andhappiness but alsothe fragility ofhuman life.

Donations for the bubbles were made which raised a total of£1540.00 split between various organisations and researchcharities chosen by the donor. 24

Simon Ball singing the “Forget-me-not” song

25

by Colin Smith How wonderful andhow fascinating thesubject ofMesothelioma is butwhat a curse to haveyour life blighted bythis complex terminaldisease. So – howgrateful to DAST I wasto be invited to speakat the recent DerbyConference in which the background and my own situation wasused.

So who am I? - I am the fairly unremarkable Colin Smith - a 68year old former joiner, surveyor and company director.

In respect of my working life - this spanned 1964 to the presentin which those early years saw me exposed to AsbestosInsulating Board (AIB) and the deadly asbestos fibres itcontained. At that time, there was no worker awareness of thedeadly nature of asbestos exposure or its devastating effects onhealth and life and as a result no personal protection or controlmeasures were available.

Like so many words, we use ‘devastating’ and ‘deadly’ sofrequently, that they lose their meaning - to put this into context,there was in excess of 3000 asbestos related deaths in 2013 with2538 being attributed to Mesothelioma. It is now confidentlyreported that the Mesothelioma deaths for 2016 will exceed 3000which is expected to increase year on year until 2020 andpossibly beyond.

Mesothelioma, Fascination & Curse

Colin Smith

Important message for the GovernmentRegardless, Mesothelioma research has, as far as I canascertain, received very low governmental clinical researchfunding, although things appear to be improving. There alsoappears to have been a somewhat half-hearted effort to controlthe asbestos risk related to the large amounts of asbestos thatremains within buildings and facilities which pre-date November1999.

Essentially, the government has elected for a management ofasbestos strategy, where the 3000 or more materials known tocontain asbestos are subject to owner (The Duty Holder)inspection, location and condition recording and control (i.e.repair, remove, monitor), however the fact remains that thesematerials remain and wait to entrap and expose the unwary orthose with a cavalier attitude. In all of this, my personalexperience indicates compliance is at best patchy, with poorquality, non-compliant work, not being unusual.

So it is my personal opinion that the faith put in a managementcontrol system is misplaced in which personal observationsuggests that exposure will continue to rise well beyond 2020with ill health and death following after the forecast latencyperiod of 30 to 50 years.

Colin’s experienceIn my own case, my exposure occurred 50 or more years ago andwas not brought to light until after a perceived gym injury whichafter self-treatment by over the counter analgaesics andosteopathic visits, was finally diagnosed as Malignant EpithelialMesothelioma in December 2015, but how lucky I was to bedirected by my GP to Newark Hospital, which has a Mesotheliomahistory profile based on the engineering history of the town andheavy use of asbestos. From there I was rapidly butprofessionally processed by my consultant, Dr Hodgson and

26

others in the team, resulting in a failed needle biopsy and finalopen thoracic biopsy which confirmed the diagnosis. My specificrequest to be referred to Leicester University Hospital and entertrials was acted on immediately and I was accepted onto theHope Clinical Trials Unit under the management of the LeadClinician Professor Dean Fennell.

From the start, my wife and I decided that the right course forus was one of optimism, openness and a positive outlook, all ofwhich, whilst not changing the prognosis, has enabled us to facethe future together with good mental strength.

The futureThe future - well who knows - many new treatments areemerging from genome research and talk abounds of wonderdrugs based on immunotherapy. This news is often conveyed, inaddition to newspaper coverage, by my consultant ProfessorFennell, whose world renowned reputation goes before him.Regardless it is his realistic yet infectious optimism, which is sovaluable, such that each consultation is like receiving a bolt ormassive charge of energy.

So in summary, it is clear that all this cost and suffering andpotentially future cost and suffering could have and can beavoided. It is equally clear in my mind that the government’sreliance on asbestos management is misplaced and theirwoefully inadequate funding of Mesothelioma research, new drugtherapies and post code access should be ended as a matter ofurgency and adequate funding for research and treatmentprovided. Mesothelioma is the poor relation, with vast sumsbeing spent on road safety. There were 1713 road traffic deathsin 2013 compared to 2538 Mesothelioma deaths. With a forecastof decreased road traffic deaths for 2016 and increasedMesothelioma deaths of 3000+ or beyond, is it time to redirectsome of that money to Mesothelioma research and treatment?

27

Thank you’sWell these are my views and background explanation in which Iwould like to pay tribute to my wife for all her dedication and care,my lead clinician Professor Fennell and his team at LeicesterUniversity Hospitals Hope Clinical Trials Unit for their on-goingtreatment and support and finally those at DAST – who supportthose suffering from this dreadful disease. THANK YOU ALL

Bereavement Support Launch‘The Elephant in the Room’ refers to atouching poem by Terry Kettering thatspeaks very eloquently of bereavementand grief. To say there is an elephantin the room, means that there is anobvious problem or difficult situationthat people do not want to talk about. Many bereaved people feelthat following the initial weeks and after the funeral, so manypeople ‘skirt round’ the elephant in the room, and feel

uncomfortable talkingabout someone’s loss,and more importantlythe person no longerthere.

This was the theme forour official launch heldat The Spot in Derby inMarch 2016, with guestspeakers sharing theirunderstanding of griefand bereavement gainedthrough bothprofessional andpersonal experiences.28

Bereavement Support Project

Jo Reeve, Bereavement Support launch

Feedback from the launch:

Individual Support To date we have responded to 194 bereavements which have beenreported to us by family members, healthcare professionals,solicitors and coroners. On notification of a bereavement, acondolence card and personally tailored letter is sent out to thenext of kin, with advice on bereavement and about health andwellbeing. Often we will be required to close down benefits claimsand give initial advice regarding coroner involvement andpractical matters. The bereaved person is then contacted 3weeks later to see if any further support is needed. We undertakeInitial Bereavement Assessments when necessary and ifsomeone needs more complex intervention or professionalcounselling, as a consequence of complicated grief, we are able torefer/signpost to appropriate services in their own locality.

Peer Support and BefriendingDAST Bereavement Befriending Scheme aims to promote aninclusive project that recognises the wide range of skills andexperiences that volunteers will bring to the scheme to supportbereaved service users. All volunteers are reference checked andfully inducted to ensure they are aware of our policies andprocedures. A full training and induction plan will ensure thatthey are trained in Safeguarding, Data Protection andConfidentiality. All volunteers receive training and ongoingsupervision from the Bereavement Support Worker

29

“The most important thing I have learnt today is knowingthis kind of service is available when there is immediateneed. This will fill the gaps and be a very special facility.”

Derbyshire Trusted Befriending Network (DTBN) Our Telephone Befriending Service is now registered with theDerbyshire Trusted Befriending Network. This is a partnership oforganisations providing befriending services to adults inDerbyshire. All services that make up the network are qualityapproved, so people using these services can be confident thatthey are safe and well run.

Befriending Service up andrunningFor the Bereavement Support Servicewe have developed new volunteeringroles, volunteer handbook, inductionand training plan. All volunteers will beasked to provide two referees and will besupported throughout their activities with us and offered furthertraining opportunities to increase their skills and experience.

We have to date recruited 6 volunteers, 3 of whom have beenreference checked and are undertaking training for the TelephoneBefriender role. One bereaved service user is already gaining thebenefits of a Telephone Befriender and a further two have beengiven the Information Packs and are expected to join the serviceshortly. Recruitment and training of volunteers will be ongoingthroughout the life of the project.

30

Case Study One month after the death of her husband throughMesothelioma, Mrs B contacted us by telephone. Mrs B wasstruggling with the intensity of her emotions. Although shehad visited her GP and was taking medication and had beenreferred to counselling at the local hospice, she still felt veryalone. Our bereavement support worker visited on severaloccasions encouraging her to access the counselling suggested

31

by her GP and gave some coping tips and suggestions,encouraging her to take small but significant steps each day.We were also able to liaise with the coroner and solicitor andexplain the processes to her in a gentle way. She wasencouraged to join the Telephone Befriending Scheme and wasmatched up with a lady of similar age who had lost herhusband a year earlier. It is clear that the weekly telephonechats have been extremely helpful and comforting for Mrs B,taking away some of her sense of isolation. Mrs B is now ableto get out of the house and has started walking with aneighbour, she has also taken up journaling.

“I Just wanted to thank you for all the help andsupport you have given me (and continue to do so)during this absolutely terribly, difficult time I amgoing through. I really appreciate everything andenjoy our chats and your advice to me, it all helpsme. Thank you for dealing with the Coroner’s office

on my behalf.

I am finding my weekly chats over the phone with(designated befriender) really helpful. It is good

to know someone is there for me. Thanks again.”

Jo Reeve and Joanne Gordon receiving the Trusted Befriending Certificate

On 9th November 2016 we projected one-hundred and fortynames of victims of mesothelioma and other asbestos related

diseases onto the West Wall of Lincoln Cathedral.

Two-hundredfamily memberswatched thepoignant tribute totheir loved ones.We received goodmedia attentionfrom local papers,radio and TV,which highlightedthe human tragedyof exposure toasbestos. Although many people were emotional on the night,they were grateful to DAST for the tribute and remembrance oftheir loved ones, whose lives had been cut short through no faultof their own but by merely going to work.

32

Reflection and Celebration of Life

Lincoln Cathedral

“I would just like to say a big thank you for the event heldlast Wednesday night at Lincoln Cathedral in memory of allthose who have passed away from mesothelioma. It was verythoughtful the way you displayed all those who have passedaway on the west wall and I am sure this was comforting tomany. I also found the awareness speech regarding the

dangers of asbestos was well presented and informative. Onceagain a big thank you and I will continue to support your

charity and the hard work you do”. Via email after the event.

DAST has always believed that it is very important to raiseawareness about the dangers of exposure to asbestos. Our

aim is to raise awareness in order to prevent future loss of life.

Asbestos in Schools project

The Scale of theproblemDAST believes that theproblem of asbestos inschools is such animportant issue that itis something we mustcampaign on to raiseawareness of this deadlylegacy.

The Department of Education’s best estimate is that over 75% ofschools contain the deadly material asbestos. If asbestos is notdamaged or disturbed it will not release fibres. However, we atDAST believe that in the school environment it is difficult to keepasbestos in a good condition. Children can knock into asbestoswalls or columns and footballs may be kicked against ceilingsand walls. Pictures pinned or stapled to asbestos walls orceilings may release fibres. At the launch of our project (above),UKATA Director, Chris Bishop stated, schools should inspectasbestos daily at the end of the school day.

DAST has also seen a growing number of teachers and schoolstaff diagnosed with mesothelioma. This year alone we havesupported in the East Midlands 3 teachers as well as one of theschool canteen staff who were diagnosed with mesothelioma.

33

Raising Awareness

Asbestos in Schools launch, Chris Bishop, Director of UKATA

Our innovative projectThanks to funding from many Trade Unions we were able todesign, with the help of TechsQuad (part of Derby Quad), aninteractive model, which highlights where asbestos may be foundin schools, as well as useful information of what to do if asbestosis found and disturbed. The original diagram and notes wereproduced by Michael Lees MBE, whose wife Gina, died ofmesothelioma at the age of 51. Gina was a primary schoolteacher. After her death, Michael dedicated 15 years of his life tocampaigning and raising awareness about asbestos in schools.

Launch of the project The launch of our project held in Nottingham attracted goodmedia coverage including the local TV. Our thanks and gratitudeare extended to Bromley Kniveton. Bromley agreed to speak tothe BBC television about his late wife, Jenny Darby, giving a veryemotional, sensitive and inspirational interview which waspresented on “East Midlands Today”. “Jenny was a teacher fornearly thirty years. She loved her job and kept in touch withsome of the children for years. One even flew from his home inHolland to be at her funeral. She taught science and wascompletely unaware of the dangers. She was exposed to asbestosin the classroom roofing tiles and heatproof mats in the labs.” 34

The interactive programme is available on memory stick fromDAST and anyone wishing to promote this very important projectcan view the information so that together we can help towardseradicating the devastating legacy of the past in order tosafeguard our futuregenerations.

Following the launch weheld an exhibition of allour Awareness projectswhich included our DIYproject and the HeritageLottery project over atwo-day period.

35

Asbestos in schools Exhibition

International Workers’ Memorial Day"Remember the dead: fight for the living”International Workers' Memorial Day, on the 28th Aprilannually, is to remember and commemorate those who havedied at work. Events around the country take place toremember all those killed as a result of work, either throughinjury or illness, whilst at the same time ensuring that suchtragedies are not repeated. Every year DAST is invited to attenda number of events throughout the East Midlands. This yearwe attended and took part in events in Nottingham, Grimsby,Cleethorpes and Immingham.

36

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. Over the years the Forumhave had many successes including:-

• Being instrumental in bringing about the Mesothelioma Act2014. Under this Act victims of Mesothelioma can apply forcompensation where they cannot trace the insurer of thenegligent company that exposed them to asbestos.

• Campaigning for uniformity of treatment which wasinstrumental in the National Institute for Health and ClinicalExcellence (NICE) recommending the chemotherapy drug,Alimta.

• Safeguarding and protecting the interests of Mesotheliomavictims in particular ensuring they are not subject to legalcosts.

• More recently the Forum have successfully campaigned tostop the Government from destroying Companies Houserecords after 6 years. Companies House hold vitalinformation about companies which have amalgamated orchanged name and this is important when tracing workhistories to provideevidence for civilcompensation.Destroying therecords after only 6years could have ahuge impact onaccess to justice.

Campaigning

Campaigning for change outside the Labour Party Conference

Heritage Lottery Fund ReportDAST’s Asbestos Heritage project ranthroughout 2016, with a grant fromthe Heritage Lottery Fund.

Our aim was to collect informationabout where and how asbestos wasused during the 20th century, sothat we could warn people workingwith historic artefacts andbuildings about the continuingdanger of asbestos.

We began by asking people tocomplete questionnaires so that wecould build up a record of trades andworkplaces where asbestos was used.From this information we could thenbuild up a list of objects which maystill contain asbestos. We also askedfor photographs and looked for oldadvertisements in a collection of DIYmagazines. The response to ourquestionnaire was better than we hadhoped, and we have built up an interesting picture of an oftenforgotten aspect of our history.

The findings and many of the photographs have been placed ontoa website - www.asbestosheritage.co.uk A questionnaire can bedownloaded from this site and contributions are still welcome.We also have a Facebook page and Twitter account which can bereached through direct links on the website.

We have produced a leaflet and a display banner for the project.This has been seen in a range of places including MansfieldMuseum, the New Art Exchange in Nottingham and LincolnCathedral. The project has also received coverage in magazinessuch ‘British Archaeology’ and ‘Industrial Archaeology News’. InOctober, our social media posts went viral as we made an official 37

Our AsbestosHeritageInformation for heritage workers,vintage collectors and propertyrenovators

A Derbyshire Asbestos Support Team Project

Registered Charity 1119684

Asbestos� Was used heavily throughout

the UK during the 20th Century

� Is still present in the fabric of

old buildings‐both domestic

properties and public buildings

� Is still present in vintage household items and other artefacts

� Those working with old buildings or vintage objects need to be vigilant

� Just low level exposure to the dust can still cause Mesothelioma, an

aggressive cancer. Prolonged exposure can cause asbestosis.

THERE IS NO “SAFE” ASB

ESTOS!

Old age does not mean

it has lost its power to k

ill

"No‐one said it was dangerous. My father worked in the same place and he

died but I never put two and two together. I thought it was a good place

to work."

“Very few people that I worked with have survived to retirement.”

In 2013, more than two and a half thousand UK residents died of

Mesothelioma.

complaint to the BBCregarding the handling of agas mask on ‘AntiquesRoadshow’. Although theproject officially ends inDecember of 2016, we willcontinue to offer up thesematerials for display and tokeep our online presenceactive. Additional funding forextension projects may besought.

If anyone reading this report would like to distribute leaflets ortalk to their local heritage site/museum about hosting a smalldisplay, please do get in touch with us.

It is both sad and heart-lifting when DAST is sent notificationof a legacy. This year we were notified that four people had leftus a gift in their Will. Of course we were sad to hear of theirpassing. Because we visit people whom we help in their homeand meet them at our events, it is a sombre moment to discoverthat someone’s own personal battle with asbestos is over.

But this is tempered with the knowledge that they haveentrusted DAST with part of their estate. It is an honour to findthat a person really believed in the work that we do and knewthat by supporting us, we will give real help to others – and keepon pushing for greater awareness of asbestos and Mesothelioma.

These legacies came at a time when we were seeking donationstowards several events. Action Mesothelioma Day, the LincolnCathedral Memorial and the Asbestos in Schools launch were alldirectly helped by the gifts. As a small, tightly run charity, wecan ensure that any legacy is spent in this way and doesn’t justdisappear into general running costs.

38

Response from the Heritage Lottery Questionnaire

Fundraising

If you would like toknow more, we havelegacy informationsheets. You candownload these fromour website – or we canpost/email them out onrequest.

Craftivism - Memory and Message PatchworkOur Craftivism project is reallybeginning to develop. Severalpeople have added hexagons to theMemory and Message Patchworkand it is growing, as we hopedthat it would, into an eyecatchingmemorial to the families affectedby asbestos. Some people havedecorated their own hexagon,whilst others have paid to have a

flower and a set of initials embroidered on by Sarah or ourtalented volunteer, Eve Dudden.

New resources availableWe have received two grants this year that have enabled us topurchase new equipment to give out to those suffering fromasbestos diseases. The aim of this equipment is to encouragepeople to take general exercise and to aid relaxation andbreathing, which we hope will help to make them that little bitmore comfortable.

Our new items include pedometers,fans, vibrating massagers andactivity journals with pens. We havealso taken delivery of a smallnumber of personal air filters for asmall group to trial. 39

Lincoln Cathedral

Eve Dudden

Walk a Mile for MesotheliomaAs usual, in September,the DAST team met upwith a small group ofsupporters to complete acircuit of the ForestRecreation Ground inNottingham. Other smallwalks took place aroundthe East Midlands andtook the form of familyoutings or simple dogwalks around the park. Special mention goes to George Baileywho completed his 1 mile walk around the wards of DerbyHospital, where he was a patient.

Some Things That DAST Supporters Have DoneOur supporters are fantastic and work hard to raise awarenessabout asbestos and how it has affected their family. Thedonations generated are very important in keeping DAST runningand reaching all of the people who need us. Their fundraising in2016 has taken the form of:

40

Walk a mile for Mesothelioma

l Marathon running

l Coffee mornings

l Bake sales

l 30 mile walks

l 1 mile walks

l Stamp collecting

l Crocheting

l Sewing

l Singing

l Planting roses

l Taking afternoon tea

l Having a birthday party

l Playing instruments

l Celebrating an anniversary

41

Joanne Gordon, 30 mile walk for DAST

l Big Lottery Fund

l Heritage LotteryFund

l Macmillan

l Unite

l NUT

l NASUWT

l UKATA

l Derbyshire CountyCricket Club

l Waitrose

l Leicester andDistrict TUC

l Various charitable trusts

Thank YouWe received several grants this year and would like to thankthe following funders for their support:

42

How to Donate to DAST

l To make a regular monthly donation, askus for a Standing Order leaflet ordownload a form from our website

l Donate online throughVirginMoneyGiving or The Big Give.

l Send a cheque made out to DAST

l Organise a fundraising event or join inwith Walk a Mile for Mesothelioma

l Buy William Bear merchandise

l Save us your used postage stamps, HPink cartridges and mobile phones

l Consider a gift in your Will

Thank you to everyone who made a donationto DAST during 2016. We would not be able tocontinue our work without your help.

43

Contact Details

DAST34 Glumangate, Chesterfield S40 1TX Telephone: 01246 380415

E-mail: mail@asbestossupport.co.ukWebsite: 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. 8020

Pictured: Heritage LotteryQuestionnaire responses