Action Mesothelioma Day 2009 

by Laurie Kazan-Allen

 

 

The 4th annual Action Mesothelioma Day (AMD) was marked throughout the UK with events, ceremonies and services to commemorate the victims of an epidemic which continues to cause thousands of deaths every year.1 As in previous years, asbestos victims' groups organized informative programs and convivial social events which created a public space for sufferers and relatives to come together on February 27. As speakers detailed their personal experiences of mesothelioma, effective coping mechanisms were shared and practical information on a range of subjects was conveyed. While remembering those who have been lost to this awful disease, those left behind were comforted by the knowledge that they were not alone. From many parts of the country, calls were issued for the government to get behind plans to establish a National Center for Asbestos-Related Disease Research (NCARD). Highlighting the human consequences of the ongoing epidemic, victims' groups called on Parliament to make a political and financial commitment to the search for cures for the debilitating diseases caused by asbestos. Speaking on behalf of the Asbestos Victims Support Group Forum, Tony Whitston said:

“In the US, mesothelioma has been given research priority to bid for mesothelioma research projects from the defense research budget in recognition of the thousands of veterans exposed to asbestos in service and in naval shipyards. In Australia, the government has given $6 million to fund a research centre. Society has a moral obligation to stand by those who have lost their health and their lives in creating this country's wealth.”2

The demand to establish NCARD UK was the headlined aim of a campaign launched by The Mirror on March 2, 2009.3

The June Hancock Mesothelioma Research Fund (JHMRF), which was one of the prime movers behind the establishment of an annual day of action on mesothelioma, was active at two locations this year. In conjunction with Asbestos Support West Midlands, the JHMRF took part in a memorial service at St. Philips Cathedral, Birmingham presided over by the Dean of the Cathedral in the company of the Lord Mayor of Birmingham; a reception at the Birmingham City Council House and a ceremonial dove release followed the service.

 

Luke and Ben Wright release doves in memory of their Granddad (Photo: Cath Christian).

Doug Jewell from the West Midlands Group said:

“A bright February afternoon saw over 150 people gather in the grounds of Birmingham Cathedral to remember those who have died of mesothelioma. During the dove release and minute's silence as people remembered their loved ones, we reaffirmed our commitment to a better future for sufferers. This can only be achieved by government support for medical research into this disease. The need for a national research effort was a major theme at the first ever civic reception for Action Mesothelioma Day in the city which was held after the service. The 1,200 pounds raised on the day will be going towards mesothelioma research. The AMD organisers are pleased with the feedback we have received to date and hope that AMD 2010 will build on the success of this year's event.”

In Leeds the JHMRF, in collaboration with the Ridings Asbestos Support & Awareness Group, hosted a well attended event at the Carriageworks Theatre in Millennium Square. The varied program began with a contribution from a teacher diagnosed last year with mesothelioma. A few bouts of breathlessness had taken John Brown4 to the doctor; the hospital admission which resulted marked the end of his old life. John was neither bitter nor resentful but spoke of being grateful for the life he had, the people he loved and the NHS. His philosophy is to “try to live day to day and focus on the present.” “You have,” he said “to find your own way to deal with this illness…and to do what works for you.” John's emphasis on the need to devise a personal road map through the chaos of the disease was reinforced by the presentation made by Natalie Doyle, a nurse consultant from the Royal Marsden Hospital. Natalie described a spiral of anxiety, fear and uncertainty experienced by people with cancer. Patients feel, she said, as if they are no longer the person they were; the “certain uncertainty” that comes with a cancer diagnosis strikes at the very core of the human condition. In an echo of John's words, she said “If it works for you then it is right.”

The presentation by Marianne Tavares, from St. Gemma's Hospice, Leeds, stimulated much interest amongst audience members. Marianne, whose work in the specialist palliative care unit has brought her into contact with many people suffering from mesothelioma, described a range of complimentary therapies which are available at St. Gemma's to help symptom management, promote relaxation and reinforce self-help strategies including: massage, aromatherapy, acupuncture, hypnotherapy, reflexology. Marianne spoke of practical techniques such as the use of steam inhalation and aroma sticks which patients were finding useful. Other speakers included Dr. Tabi and Laurie Kazan-Allen who addressed the subjects: Immunology for the Uninitiated and The International Ban Asbestos Organization. During the morning meeting, a new victim support group – Mesothelioma & Asbestos Related Concerns ( MARC) – was launched.5 The formal program ended with a summing up of the day's discussion by John Battle, Member of Parliament for Leeds West, who urged delegates to press the Government to support plans for a National Center for Asbestos-Related Diseases. The Leeds AMD 2009 event was brought to a close by a ceremonial dove release from Millennium Square. The 1500 raised from raffles and contributions on the day will be donated to mesothelioma research.

 

The JHMRF meeting in Leeds.

In Glasgow on AMD 2009, a plaque was dedicated to Scottish mesothelioma victims by Clydeside Action on Asbestos (CAA), Scotland's oldest asbestos victim support group. Unveiling the memorial at the CAA office, Consultant Thoracic Surgeon Alan Kirk highlighted the vital support given to patients by victim support organizations such as CAA. Commenting on the importance of the day's tribute, mesothelioma sufferer John Connelly said:

“Days like this are extremely emotional for sufferers and their families. But it is vital we honour those who have died already, as well as those who will die in the future. It's also important that we let others know about the disease.”6

Remembering asbestos victims was high on the agenda of another activity in Glasgow on February 27. The event organized by the Clydebank Asbestos Group featured a showing of the landmark TV documentary broadcast in 1982, Alice – A Fight for Life.7 Guest speakers lead a discussion stimulated by the moving documentary about the life and mesothelioma death of Alice Jefferson. Nearly 27 years after it was made, many of the concerns highlighted in this program remain current.

Groups in Newcastle, Manchester, Liverpool and Sheffield also mounted high-profile AMD events. In Gateshead, the Mick Knighton Mesothelioma Research Fund (MKMRF) marked the day by holding an Action Mesothelioma Conference which included presentations from medical specialists such as Dr. Tim Peel, Dr. Rob Allcock, Dr. Albi Ryan, Doreen Hall, Dr. Helen Clayson, Jan Egerton and others who represent asbestos victims such as mesothelioma sufferer Debbie Brewer, trade unionists and solicitors. Chris Knighton, who founded the MKMRF, felt that this year's event had a special significance:

“When we were devising the 2009 program, the Mayor of Gateshead, Mrs. Maureen Chaplin, was invited to open the conference. Little did we know that mesothelioma would cause her death on February 11, just two weeks before AMD. It is believed that Mrs. Chaplin was exposed to asbestos during her time as a nurse. Her death is a salient reminder that mesothelioma can hit anyone, anywhere. For future generations, the only protection is to prevent exposure to asbestos; for those who have already been exposed we need to find a cure. Since the MKMRF was established we have raised over 500,000 through the generosity of victims and the public. Our fund-raising efforts will continue as will our support for those in the North East who have been affected by all asbestos-related diseases.”

A public meeting at Manchester Town Hall, attended by nearly 200 people, was addressed by MP Tony Lloyd, MP David Crausby, Dr. Jennifer Hoyle, Consultant for the Mesothelioma Cancer Network, and Consultant Respiratory Physician Dr. Dev. Other MPs who were in attendance, Paul Rowan, David Heyes, Graham Stringer and Jim Dodson, added their voices to calls for government-funded mesothelioma research.

 

BBC North West included an interview about the significance of AMD on breakfast time TV which was followed by another piece about the event itself. Both Radio Manchester and the Manchester Evening News covered AMD; a full page newspaper article featuring the ex-Coronation Street actor Bruce Jones, who played the character Les Battersby, and mesothelioma sufferer John Willetts raised awareness of the impact this cancer is having on local people. In Liverpool, the Merseyside and Cheshire Asbestos Victims Support Groups held a joint meeting at the Town Hall which was addressed by medical experts and civic dignitaries.

 

In her presentation Dr. Chris Warburton, Clinical Director of the Aintree Hospital Trust, said:

“I have seen the lives of many patients and the lives of their families devastated by the development of mesothelioma. Treatment is mainly aimed at reducing symptoms rather than curing the condition, and the chances of survival have not changed for decades. More research is need into the earlier detection of this devastating disease and strategies developed to attempt to cure it. For this to happen a co-ordinated approach to research is required, along with an increased amount of research funding.”8

Brian Delaway, from the Cheshire Group, reaffirmed Dr. Warburton's sentiments:

“Funding to find a cure for mesothelioma is not only a moral obligation of society… it also makes economic sense to save the lives of those who will be stricken down in the future and at a stroke save the NHS huge sums and the insurance industry compensation payouts they consistently try to avoid.”

The AMD 2009 symbol chosen by the Sheffield and Rotherham Asbestos Group (SARAG) was the snowdrop. On Friday, SARAG started their AMD remembrance dedications by distributing 250 pots of snowdrops outside Barnsley Town Hall. This was followed by a public meeting which called for government funding for the establishment of a national research program. The speakers at the meeting included local politicians, MPs, trade unionists and mesothelioma charity representatives. The day's activities raised 1650 for mesothelioma research.

As a consequence of its industrial past, Derbyshire is an asbestos hotspot; due to the local prevalence of this cancer, mesothelioma has been dubbed “a scourge in Derbyshire.”9 On AMD 2009, events were mounted in Leicester and Derby by the Derbyshire Asbestos Support Team (DAST) which has, in the last five years, provided emotional and practical support to 121 people with mesothelioma. Leicester's 4th AMD event was organised by mesothelioma widow Linda Thornton, in collaboration with her DAST colleagues. A service at Leicester Cathedral was followed by a symbolic dove release in memory of the town's many mesothelioma sufferers, amongst which was Linda's husband Roger. In Derby, the relatives of those lost to mesothelioma attended DAST's February 27th meeting which started at 10 a.m. at the Quad, in Derby's Market Place; speakers included a lung cancer nurse specialist, two trade unionists, a solicitor and mesothelioma widow Val Pepper and widower Mike Lees who, since his wife's death from mesothelioma, has become the country's leading expert on asbestos in schools.10 The program was concluded with a short production by a local theatre company which highlighted the ongoing threat posed by asbestos products hidden within the UK infrastructure such as the contaminated building materials which remain in schools.

There is no shortage of mesothelioma victims in the South of England and victim support groups active in London, Hampshire and Plymouth all marked AMD. An informal fundraising coffee morning, organized by East London Mesothelioma Support (ELMS), was hosted by Newham's Civic Ambassador Councillor Clive Furness in Newham Town Hall. Mesothelioma widow Eileen Beadle, who founded ELMS, said that the purpose of the event was to “increase awareness of the dangers of being exposed to asbestos and, of course, to raise funds that will go to the Lung Cancer & Mesothelioma Research Fund at St. Bartholomew's hospital.” In all, a total of 1,800 was raised on the day from contributions, raffles and a sponsored balloon release.

 

Having paid tribute to the six ELMS members who had died since AMD 2008, there was a minute's silence to remember all those who had been and will be affected by asbestos diseases. The AMD 2009 symbol chosen by the Hampshire Asbestos Support and Awareness Group (HASAG) was doves; TV personality Sangeeta Bhabra and MP John Denham released the HASAG doves in Guildhall Square as the culmination to the activities in Portsmouth which included a public meeting at Portsmouth Guildhall attended by 120 people. Diana McLellan, who founded HASAG with her sister Lynne Squibb after their father's death from mesothelioma, pledged the group's support for the establishment of a national mesothelioma research effort saying: “The government doesn't put any money into it (UK mesothelioma research) at all so the funding all comes from charities.”11 In Plymouth, the Roger Lowe campaign, founded in memory of the mesothelioma death of dockyard worker Roger Lowe, held a private memorial service at Saltram House, Plympton to remember those who had died from mesothelioma.12

In the dignified surroundings of town halls, in the hush of cathedrals and churches, in draughty meeting rooms and in crowded offices, groups throughout the country found their own way to mark a day which is rapidly becoming a de facto national asbestos awareness day. More than one hundred MPs signed Early Day Motion 879: Action Mesothelioma 2009 campaign which welcomed the grass-roots efforts to raise asbestos awareness and improve medical treatment offered to those in need.13 As Dick Jackson, one of the first UK campaigners on asbestos, said in the 1980s: “Prevention is better – there is no cure.”14

March 12, 2009

_______

1 Mesothelioma, a deadly form of asbestos cancer, is the signature disease of a group of asbestos-linked illnesses and, as such, is a symbol of the overall damage done by the country's use of millions of tonnes of asbestos.

2 Asbestos Victims Support Groups Forum (UK) Press Release. Call for government funding for mesothelioma research centre. February 2009.

3 Cook E & Swain M. The Dust of Death. March 2, 2009.
http://www.mirror.co.uk/tm_headline=the-dust-of-death&method=full&objectid=21164480&print_version=1&siteid=115875-name_page.html

4 To protect his privacy and that of his family, the real name of this speaker is not being used.

5 MARC will hold monthly meetings “to provide mutual support, and a listening ear, along with opportunities for enjoyable social activities.” More information can be obtained by calling: 07929 137654

6 Taylor M. Asbestos-linked cancer victims honoured as plaque unveiled. The Herald. February 28, 2009.

7 Willis J. Alice – A Fight For Life: 25 Years On. British Asbestos Newsletter, issue 67, Summer 2007.
See: http://www.lkaz.demon.co.uk/ban67.htm

8 Merseyside and Cheshire Asbestos Victims Support Group Press Release. Call for government funding for mesothelioma research centre. February 2009.

9 Campaigners call for Government research into mesothelioma. February 27, 2009. See:
http://www.thisisderbyshire.co.uk/news/Government-needs-understand-urgency-research/article-731613-detail/article.html

10 See: http://www.schoolasbestosaction.co.uk

11 Doves bring peace message to cancer victims. The News. February 28, 2009.
http://www.portsmouth.co.uk/people/Doves-bring-peace-message-to.5025618.jp

12 Asbestos campaigners back awareness day. February 27, 2009. The Herald.
http://www.thisisplymouth.co.uk/news/Asbestos-campaigners-awareness-day/article-731856-detail/article.html

13 http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=37956&SESSION=899

14 Kazan-Allen L. The Asbestos War. April 24, 2004
http://ibasecretariat.org/lka_asbestos_war.php?namesrch=dick jackson

 

 

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