Action Mesothelioma Day 2016 

by Laurie Kazan-Allen

 

 

From Glasgow to Portsmouth, from Swansea to Gateshead via the Isle of Man, events were held throughout the UK on July 1, 2016 to observe Action Mesothelioma Day 2016. The extent and diversity of the activities marking the 11th national mesothelioma day underscored the growth in support for those suffering from a supposedly “rare” disease which nevertheless caused 7,398 deaths between 2011 and 2013.

By coincidence AMD this year fell on the 100th anniversary of the Battle of the Somme. From July 1 to November 18, 1916 British and French troops fought against the German Empire in the largest battle of the First World War. With one million soldiers wounded or killed, the Somme was one of the “bloodiest battles in human history.” While no one knows the total number of those killed by asbestos, experts have predicted that this year there will be 58,885 asbestos-related cancer deaths in the 28 EU member states; last year’s figure was 47,000. After decades of widespread and uncontrolled use, the chickens have finally come home to roost. According to European researchers:

“Mesothelioma alone already accounts for approximately 15% of all work-related cancer deaths and some 10% of the new work-related cancer cases. Trends in mesothelioma deaths suggest the burden of asbestos-related cancer caused by past work-related exposure is continuing to increase.”1

Within this historical and statistical context and against the post-Brexit backdrop of political uncertainties and economic flux, asbestos victims, campaigners, trade unionists, medical and other experts gathered to pay tribute to those whose lives had been lost by asbestos exposures at work and at home. Presentations were made throughout the country by asbestos victims, carers, grieving family members and municipal officials in civic centers, church halls, union buildings, a Quaker meeting house, a Gothic castle, a memorial garden and hotel premises. There were public meetings, memorial services, information sessions, open days, social gatherings and dove releases galore. Some events were full on all day affairs while others were more intimate; whatever the program, venue size or numbers taking part, all the activities had a positive message: you are not alone. Reinforcing the need for a public manifestation of so much private tragedy, Phyllis Craig MBE of the Glasgow-based group Clydeside Action on Asbestos said:

“Each year, the numbers attending our memorial increases...all of whom have lost a partner, a mother or father, a close relative or a friend. We must remember them and send a strong message that the legacy of extensive use of asbestos in the UK continues to blight our communities. This is not something that belongs in the past or that can be ignored. We will not allow it to be ignored, and events like this not only help to raise awareness of the damage caused by asbestos, but provide a place where people can come together, support each other and share some time with others who have also experienced loss.”2

 


Clydeside Action on Asbestos members with Phyllis Craig MBE in foreground at Glasgow AMD2016 event.

New publications for mesothelioma sufferers and their relatives were distributed last Friday, including the June Hancock Mesothelioma Research Fund’s 2016 Mesothelioma Handbook and the 100th Commemorative Issue of the British Asbestos Newsletter;3 links to other resources – The Silent Killer: Mesothelioma4 – were circulated.

 


Dr. Helen Clayson, author of the Mesothelioma Handbook, at AMD meeting of Cumbria Asbestos Related Disease Support, Barrow-in-Furness.

In one-to-one sessions and in presentations made at several AMD events, medical specialists provided invaluable guidance on treatment options, symptom relief and clinical trials. In Gateshead, contributions from Clinical Oncologist Dr. Noelle O’Rourke, Palliative Medicine Consultant Dr. Hannah Gunn and Mesothelioma UK Nurse Leah Taylor were received with great interest judging by the number of questions asked by mesothelioma patients in the audience. This event was organized jointly by well-known campaigner Chris Knighton MBE of the Mick Knighton Mesothelioma Research Fund,5 Mesothelioma UK Nurse Leah Taylor and newcomer Samantha Cox of the Paul Readhead Asbestos Support Group.6

 


Memorial Roll Call, Gateshead AMD2016 event. From left: Chris Knighton, Samantha Cox, Anne Craig, Linda Scott and Leah Taylor.

Chris lost her husband Mick to mesothelioma in 2001 and Samantha’s dad Paul died in 2015. In her presentation, Samantha – call me Sam – detailed the enormous support her father had received from HASAG, a victims’ support group in Hampshire, which had itself been started by sisters Lynne and Diane after their father Dave’s mesothelioma death in 2005.7 Commenting on what her daughters have done in their father’s memory, Betty Salisbury said:

“November 2004 was the start of it all for our family. Dave had always been fit and well. He ignored the persistent cough and kept secret the increasing breathlessness he was experiencing. The mesothelioma diagnosis he received came just weeks after he finally visited the doctor in February 2005. Our family was cast adrift by this illness and though we all rallied round, Dave died in December 2005. Our daughters resolved to provide the support and assistance which we had not received to others and that HASAG is now in its 10th year is wonderful and tragic in equal measure: wonderful, that HASAG has developed such a productive and supportive network but tragic that there are so many new sufferers.”

In the ten years since HASAG was founded, it has raised 250,000 for mesothelioma research. On July 1, 170 HASAG supporters meeting in Portsmouth were updated on how these donations had been spent to progress medical research and support patients. Highlights of the day included presentations by Mesothelioma UK Nurse Anne Moylan and Consultant Medical Oncologist Dr. Luke Nolan from Southampton General as well as the charity raffle, buffet lunch and dove release.

 


Mesothelioma UK Nurse Anne Moylan speaking at HASAG meeting, Portsmouth.

Many of the UK areas worst affected by mesothelioma are in the North; on Merseyside and in Manchester, workers in shipyards, docks and heavy industry were routinely exposed to asbestos. Health and Safety Executive data for the incidence of male mesothelioma mortality between 1981 and 2011 recorded 1,086 deaths in Merseyside and 1,358 in Greater Manchester. On July 1, the Merseyside Asbestos Victims Support Group (MAVG) and Cheshire Asbestos Victims Support Group jointly organized a well-attended public meeting at Wallasey Town Hall. Reporting on the day’s activities, MAVG Information Officer John Flanagan said:

“Children from New Brighton Primary School on the Wirral representing ‘tomorrow’s workers’ released the doves with youthful gusto. This tradition pays tribute to all those suffering from mesothelioma and other asbestos diseases now and remembers past generations of victims. In their memory, we pledged to continue the fight for an asbestos-free future and achieve justice for those whose health has been stolen by asbestos exposures.

In the last budget, the government allocated 5 million to research into finding better treatments and a cure for mesothelioma. Most regretfully there is still no cohesive strategy by national government to deliver these goals. While one-off sums like this are very welcome we still need annual guaranteed funds equal to what other cancers have spent on them for research. Mesothelioma is still the poor relation when it comes to research funding when compared to other cancers.”

 


Children from New Brighton Primary School, other dignitaries and guests at Wallasey Town Hall, Liverpool.

A few miles down the M62, an outdoor rally, dove release and public meeting took place in Manchester City Centre which brought together a cross-section of mesothelioma stakeholders including four Members of Parliament. Reporting on the day, Graham Dring of the Greater Manchester Asbestos Victims Support Group said:

“Two hundred people gathered in Lincoln Square, Manchester on Friday to commemorate those who had lost their lives to mesothelioma. Local MPs Kate Green, Mike Kane, Andy Burnham and Simon Danczuk pledged their ongoing support for the fight for more research funding before doves were released as an act of remembrance. A public meeting in the Friends Meeting House afterwards heard from mesothelioma patient Trevor Barlow and local consultant oncologist Dr Paul Taylor, who outlined the latest developments in mesothelioma research and treatments.”

 


Dove release by Greater Manchester Asbestos Victims Support Group.

In Leicester, a service of reflection and hope was held at the Cathedral by Mesothelioma UK, a national resource center dedicated to providing free specialist information, support for sufferers and their families and leading campaigns for the improvement of mesothelioma care and treatment. Attendees were addressed by religious and political leaders, patients and patient advocates. With a contribution from a classical guitarist and the opportunity to attach messages of love and loss to the reflection tree, the event provided an occasion for those affected to come together in an atmosphere of fellowship and communion.

 


Agenda for Service of Reflection and Hope, Leicester.

With AMD2016 activities also taking place in Derby, Sheffield, Birmingham, Leeds, Swansea and the Isle of Man and extensive media coverage of these events,8 it is evident that this national day of remembrance is both respected and valued by the UK community of mesothelioma warriors, carers and campaigners.

 


Commemorative dove release by Asbestos Support West Midlands, Birmingham.

 


Swansea information event organized by Asbestos Awareness and Support Cymru.

 


South Yorkshire Asbestos Victim Support Group AMD2016 activity, Sheffield.

The coalition of those backing AMD remains stalwart in its determination to ensure that funds for mesothelioma research whether from private or public sources are spent in the most effective way possible to improve treatment options and outcomes for the injured. Woe betide any organization or group which impedes progress.9 There is more to come!

July 6, 2016

_______

1 W.P. Jongeneel et al. Work-related cancer in the European Union. July 2016.
http://www.rivm.nl/dsresource?objectid=rivmp:315353&type=org&disposition=inline&ns_nc=1

2 Asbestos victims remembered at annual Glasgow memorial service. July 2, 2016.
http://www.eveningtimes.co.uk/news/14594367.Asbestos_victims_remembered_at_annual_Glasgow_memorial_service/

3 Press release. 100th Issue of the British Asbestos Newsletter. June 2016.
http://ibasecretariat.org/press-rel-100th-issue-of-unique-british-publication.pdf

4 Nye, R. The Silent Killer, mesothelioma. 2016.
http://www.lulu.com/shop/raymond-nye/the-silent-killermesothelioma/paperback/product-22769018.html

5 Since it was started, the Mick Knighton Mesothelioma Research Fund (MKMRF) has raised 1.5+ million for mesothelioma research. MKMRF website:
https://www.blf.org.uk/support-for-you/mesothelioma/mkmrf

6 Paul Readhead Asbestos Support Group website: http://www.prasag.co.uk/

7 Hampshire Asbestos Support & Awareness Group (HASAG) website: http://www.hasag.co.uk/

8 Calls for removal of asbestos from schools intensify after teacher death. July 1, 2016.
http://www.edexec.co.uk/education-executive/articles/calls-for-removal-of-asbestos-from-schools-intensify-after-death-of-teacher
Action Mesothelioma Day. July 1, 2016.
http://www.rochdaleonline.co.uk/news-features/2/news-headlines/103838/action-mesothelioma-day
Doves soar into sky for 'Swindon disease' victims. July 1, 2016.
http://www.swindonadvertiser.co.uk/news/14593363.Doves_soar_into_sky_for___39_Swindon_disease__39__victims/

9 Mystery over the Multimillion Mesothelioma Grant. April 19, 2016.
http://ibasecretariat.org/lka-mystery-over-the-multimillion-mesothelioma-grant.php

 

 

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