Action Mesothelioma Day 2019 

by Laurie Kazan-Allen

 

 

As Britain approaches the 20th anniversary of its ban on asbestos, thousands of people continue to die every year from toxic exposures at work or at home. On Friday, July 5, 2019 events were held on Action Mesothelioma Day (AMD) in England, Scotland and Wales to remember those who had been lost to mesothelioma, the signature cancer associated with exposure to asbestos, and other asbestos-related diseases. Under bright blue skies, butterflies and doves were released, poems were read, presentations were made and music was enjoyed as people found solace in the fellowship and camaraderie provided by the events organized by asbestos support groups and asbestos charities. By a rather remarkable quirk of fate, on July 5, one of the most remarkable asbestos headlines of recent times was emblazoned across the front page of The Guardian newspaper: Revealed: the asbestos risk at hundreds of schools. This was followed on July 7 in the Sunday online edition of the same newspaper with an article headlined: Britain’s death toll from asbestos at crisis level, figures reveal.1

As always, the special guests for the AMD event organized in Liverpool by the Merseyside Asbestos Victims Support Group and the Cheshire Asbestos Victims Support Group were local school children; this year the VIPs came from the New Brighton Primary School in Wallasey, Merseyside.

 


Schoolchildren releasing the doves behind the Liverpool Town Hall. Picture by C Ingram, Unionsafety (Enlarge image).

Other dignitaries in attendance included: Merseyside MP Louise Elman, the Junior Lord Mayor of Liverpool Harriet Kenyon, the Young Lord Mayor of Liverpool Indea Humphries and Mayors representing: Liverpool Councillor Peter Brennan, Liverpool Metro Steve Rotheram, Sefton (Mayor Elect) Councillor June Burns, Halton Councillor Margaret Horabin and St Helens Councillor Janet Johnson.2 Metro Mayor Steve Rotheram told the 150+ people gathered at Exchange Flags, across the street from Liverpool Town Hall, that:

“The continuing lack of government action on mesothelioma is nothing short of a national disgrace. There are still thousands of people dying of mesothelioma each year, as a result of exposure to asbestos in the workplace. I have campaigned for many years for funding for research into this devastating disease and for fair compensation for victims and I’m proud to stand with local support groups on this year’s Action Mesothelioma Day.”

During the meeting which followed, mesothelioma sufferers Sandra Kellett and Jane Edwards described to the packed hall the daily realities of living with asbestos cancer. Mesothelioma UK Nurse Specialist Maria Guerin was in attendance to provide support and additional information.

Shirtsleeves and sun cream were the order of the day in Manchester at an outdoor rally in Barbirolli Square organized by the Greater Manchester Asbestos Victims Support Group (GMAVSG) and chaired by Mavis Tong, whose husband died from mesothelioma. Participants heard messages of solidarity from local MPs Kate Green, Tony Lloyd and Rebecca Long-Bailey.

 


Dove release at AMD 2019 event in Manchester organized by the GMAVSG (Enlarge image).

After the dove release, the proceedings were moved indoors to the Friends Meeting House where Mesothelioma UK Nurse Specialist Lorraine Creech provided an update on developments in mesothelioma research and treatments in a presentation entitled: “The Way Forward.” Mayor of Greater Manchester Andy Burnham also addressed the meeting.

The June Hancock Mesothelioma Research Fund (JHMRF) held their legendary annual “Meet the Researchers” AMD event from 10 a.m. – 4 p.m. in Leeds to bring together patients, families, doctors, nurses and researchers in a relaxed environment in order to facilitate the exchange of information in language easily understood by non-specialists. The format of these sessions has been described as a cross between speed dating and the Apprentice with each speaker having a short amount of time to explain his/her subject to a small group of people before moving on to the next group.

 


JHMRF “Meet the Researchers” AMD 2019, Leeds (Enlarge image).

Over the last 14 years, it has been found that this popular format encouraged the asking of questions and improved the communication skill of researchers. The positive outcome of this type of event was described and analyzed in an academic paper published in 2018 entitled: Meet the researchers: an alternative method of engaging patients with research in mesothelioma.3 Topics popular at the JHMRF 2019 event included: new approaches to mesothelioma treatment, improvements in symptom control, peritoneal mesothelioma, patient involvement in research and the work of the Mesothelioma Research Network.

The Derbyshire Asbestos Support Team (DAST) held their AMD event at the Whitworth Centre in Darley Dale near Matlock. They began the day with updates on DAST’s activities with a particular focus on the asbestos in schools campaign. Before lunch, the winning poem from the DAST 2019 poetry competition was read out, after which the 2019 Walk a Mile for Mesothelioma campaign was launched with a one mile stroll around Whitworth Gardens.

 


DAST participants enjoying the sunshine on AMD 2019 in Whitworth Gardens (Enlarge image).

In Newton Aycliffe, County Durham, fifty delegates attended the AMD seminar organized by Readley Asbestos and Mesothelioma Support in Redworth Hall. Consultant Medical Oncologist Dr Alastair Greystoke reported on ongoing mesothelioma clinical trials and Dr. Daniel Murphy from the University of Glasgow provided an insight into the progress of research into the biology of mesothelioma. Other speakers included: Leah Taylor from Mesothelioma UK and Sam Cox and Joanne Murray from the Readley support group. The event concluded with a dove release and afternoon tea. As evening fell, the Millennium Bridge was lit up blue for mesothelioma; a gesture of municipal solidarity organized by a member of the Readley support group.

 


Newcastle’s Millennium Bridge lit up on Action Mesothelioma Day 2019 (Enlarge image).

In Sheffield, a well-attended Action Mesothelioma Day event organized by the South Yorkshire Asbestos Victim Support Group (SARAG) took place in Sheffield Cathedral. After a performance by the Sheffield Socialist Choir opened the service, and in the presence of the Lord Mayor of Sheffield Tony Downing, SARAG members and their families, a list of those who had suffered from asbestos-related diseases was read out. During the meeting which followed in the Chapter House room speakers Paul Blomfield, Labour MP for Sheffield Central, Jawad Qasrawi from Hazards Magazine and SARAG Chair Colin Ellis reflected on the injustice caused by asbestos exposures in the UK and around the world. Ending the session, a candle lighting ceremony took place, after which light refreshments were provided.

Leicester Cathedral, a popular tourist destination and the final resting place of Richard III, was the venue for the AMD event organized by Mesothelioma UK, a unique charity dedicated to ensuring equitable access to care, support, information, expertise and clinical trial opportunities for mesothelioma patients. The guest speakers who addressed attendees at the Cathedral included one of the country’s leading mesothelioma specialists Professor Dean Fennell, Clinical Nurse Specialist Karen Lord and Professor Mick Peake, Mesothelioma UK’s Chair of the Board of Trustees and Clinical Director of the Centre for Cancer Outcomes, University College London Hospitals. The theme of the service was hope and reflection.

 


Professor Dean Fennell speaking at the Mesothelioma UK AMD event in Leicester (Enlarge image).

Under bright blue skies, doves were released in Jubilee Square memory of loved ones lost to mesothelioma by the Lord Mayor of Leicester and the Lord Lieutenant of Leicester. Guests were informed that the Spinnaker Tower was to be lit up in blue, the color of the forget-me-not flower on Mesothelioma UK’s logo to mark AMD.

 


Spinnaker Tower, Portsmouth, July 5, 2019 (Enlarge image).

Three hundred miles further north, the Scottish weather was not quite so balmy as 150 supporters of Clydeside Action on Asbestos (CAA) gathered in Provand’s Lordship Gardens, Glasgow to remember victims of asbestos-related diseases; guest speakers included officials from the GMB and Unite trade unions, Labour Member of the Scottish Parliament Anas Sarwar and consultant respiratory physician Dr. Kevin Blyth. Unite’s Steve Dillon read a poem that put into words his feeling about the day: Dust to Dust. CAA’s memorial wreath was laid by Cathie Hyslop, whose husband died in 2018 from mesothelioma, and her grandson.

 


Cathie Hyslop and her grandson at CAA’s AMD 2019 event (Enlarge image).

In Wales, the sun was shining as doves were released and the poem: Look to this Day by the classical Sanskrit writer Kalidasa was read by Mick Antoniw, Welsh Assembly Member, and a long-time supporter of Asbestos Awareness & Support Cymru (AASC).

 


Welsh Assembly Member Mick Antoniw in Cardiff (Enlarge image).

Mesothelioma UK Nurse Specialist for Wales Sarah Morgan spoke during the meeting which followed at the Norwegian Church and Arts Centre in Cardiff Bay along with Robyn Miles, from Respiratory Innovation Wales, and others.

Other AMD events which took place before or after July 5, included the HASAG Asbestos Disease Support event in Portsmouth on June 28.4 This year’s record-breaking attendance meant that it was standing room only and the amount collected for mesothelioma research from the day’s activities, including raffles, tombola and donations, totalled £30,000.

 


HASAG AMD 2019 event: Standing room only! (Enlarge image)

Guest speakers were Lead Mesothelioma UK Nurse Specialist for the South Anne Moylan, Liz Darlison MBE, Director of Services for Mesothelioma UK, and solicitors Lynn Yeates and Andrew Morgan. Amidst beautiful flowers donated by a HASAG supporter and under a flawless blue sky, butterflies were released to expressions of wonderment from young and old alike.

A church service organized by Anglia Asbestos Disease Support Group at St Edmundsbury Cathedral in Bury St. Edmunds on July 7 provided the opportunity for families and friends to remember those who had been lost to asbestos diseases. The service was followed by the laying of a wreath in the garden of remembrance.

 


Anglia Asbestos Disease Support Group’s AMD 2019, Bury St. Edmunds (Enlarge image)

The progress being made throughout the UK in improving services for asbestos victims and raising awareness of the hazards posed by asbestos-containing products remaining within the national infrastructure is a direct result of the efforts of the groups named above and many more who are working on a daily basis to confront the challenges posed by the country’s asbestos legacy. At a time when negativity, exclusion and selfishness have become ever more prominent in the national discourse, it is of solace to note that the annual calendar fixture of AMD is a beacon of hope not just for the asbestos bereaved but for their friends, colleagues and communities. In this, as in so many other ways, Margaret Thatcher got it wrong: there is such a thing as society but it needs to be cherished and carefully nurtured by all of us. AMD provides a chance for us to do just that.

July 16, 2019

_______

1 Perraudin, F. Britain’s death toll from asbestos at crisis level, figures reveal. July 7, 2019.
https://www.theguardian.com/society/2019/jul/07/britains-death-toll-from-asbestos-at-crisis-level-figures-reveal

2 Ingrams, C. Action Mesothelioma Day 2019 - Merseyside and Cheshire Event in Liverpool. July 2019. https://www.unionsafety.eu/docs/HSNewsItems%202019/July/ActionMesotheliomaDay2019MerseysideAndCheshireEventInLiverpool.html#asbestos%20#mesothelioma

3 Hill, K, Portman, M, Tabi, Z. Meet the researchers: an alternative method of engaging patients with research in mesothelioma. 2018.
https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-018-0119-x

4 HASAG. Action Mesothelioma Day, 2019.
https://www.hasag.co.uk/action-mesothelioma-day-2019/

 

 

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