Living with Mesothelioma -My Diary- My Mesothelioma UK Speech Video and my Heartfelt Message to the HSE

I was asked by Linda Reinstein if I had a video on my speech at Mesothelioma UK. I sneaked it over on a PM and wow!! she shared it into here facebook and Twitter. I will now buck up courage and place it here

I was so so emotional and slipped a couple of times. I had just told me that I was the first in the world to have such a huge result and the world is waiting for my results so that they can carry on.—I was shakened as that is a huge responsibility I just want the Warriors to have a chance.  and Liz came over and hugged me –everyone said I was so human and they loved it but I haven’t put it around yet.

There has been some great comments on the IATP Newsletter against the HSE App so I think tomorrow when they are back at work things will really be hotting up.

We really do need something like ADAO a charity run  in the US who fight for Asbestos.  I thought we had the HSE but feel let down now.


IATP do a great job training the Industry and we have Asbestos In Schools  so its left to these to fight our corner about Asbestos.

The Independent Asbestos Training Providers website only lists asbestos training providers that have submitted documentary evidence confirming their compliance with the regulations, including independent, external audits; where necessary. The details of these audits are included with the listings, for our clients to check should they so wish.
Whichever type of asbestos training you’re looking for; Asbestos Awareness (Type A), Non-Licensed Asbestos Work (Type B) or Licensed Asbestos Work (Type C) – the IATP site lists training providers in your area.
To find the ideal asbestos training provider to meet your needs,
If you are an asbestos training provider and wish to know more about listing on this site, please .
IATP is supporting the HSE’s Asbestos: Hidden Killer campaign, which is seeking to raise awareness of the dangers of asbestos among tradesmen and women. Currently, each week, roughly 20 tradesmen die because of exposure to asbestos; to see how asbestos can affect you,

Iatp have told me Mesothelioma UK, DAST, AASC etc, they all fragmented though, dont work together, US doesnt have the same as us in the charity sector.. Linda is tackling 2 fronts, banning US and supporting patients / families, we dont have the same issues here’

HSE is the governing body, however they outsourced the campaign to a private company, that obviously has not expertise or experience with anything asbestos related. I do believe we will get the campaign changed to fit for purpose and regulations or ditched.. Big difference between us and US is that we banned asbestos 1998, they still import and use in products.

ADAO is on a loose loose until they ban it completely.

We also have IBAS.. Laurie is a huge positive for the UK and the UNIONS who are absolutely awesome and Hazards. we have a lot going for us UK

Laurie wrote


October 1, 2014

Lessons to be Learned: The Fight for Asbestos Justice in Italy

People whose lives have been scarred by exposure to asbestos have a right to see their abusers punished. Unfortunately, in the UK the great asbestos barons escaped with their pensions intact and their liberty unaffected. Where our judicial system has failed, the Italian one has succeeded. The 2012 jail sentences handed down by a Turin Court to former asbestos businessmen Stephan Schmidheiny and Jean-Louis de Cartier de Marchienne were landmarks in the global fight for asbestos justice.

Last week (September 25 and 27, 2014), the Italian press reported the latest prosecution for asbestos crimes. Public prosecutors Lorenzo Boscaglio and Gabriella Viglione have indicted thirty-nine defendants, all of whom were former owners or Chief Executive Officers of the Olivetti company; many of these individuals were well-known Italian businessmen. According to the press reports, asbestos contamination was rife at the Olivetti plant in Ivrea, thirty-five kilometres from Turin. A particularly worrying source of exposure was the talc used in the manufacturing process; it was contaminated with tremolite asbestos.

Sixty-eight year old Olivetti office worker Bruna Luigia Perellohas has mesothelioma. She never worked with asbestos but believes her exposure took place when she visited the shop-floor. Since she was diagnosed in 2011, she has had two surgical interventions. She is determined to see the people who caused her terminal illness in court. Commenting on the case, her husband Orfeo Maozin, who worked in Olivetti’s IT department, said: “We thought Olivetti was a safe place, we never thought it would end like this.”

Fundamental facts which will be examined by the prosecutors during the trial include the following:

  1. the risk posed by tremolite contamination at the plant and the existence of a 1981 Turin Polytechnic report which highlighted the hazard;
  2. the presence of asbestos in the canteen;
  3. the delay in decontaminating the factory which was, it was alleged, due to corporate cost-cutting;
  4. allegations that measurements of airborne asbestos fiber dispersion were deliberately adjusted and falsified;
  5. failure to prioritize the health and safety of workers.

Mrs. Perellohas has a right to her day in court so too do asbestos victims in Britain and elsewhere. It remains a grave injustice that outside of Italy, few judicial systems have the ability or desire to stand up for the injured. As the case against the Olivetti executives progresses, we await the time when British asbestos executives, directors and owners find themselves facing criminal charges for the harm they have done.

September 25, 2014

Asbestos: Shared Legacy, Divided Response

One thing is certain – where asbestos is used, a trail of avoidable death follows. In developed countries, the dire consequences of hazardous human exposures are recognized. As a result, the future use of asbestos has been banned or seriously restricted.

This week the Governments of Israel and France announced million dollar budgets to remove asbestos from national infrastructures, with France’s Housing Minister Sylvia Pinel declaring war on asbestos in public housing. Her actions are both warranted and proportionate; last month, (France’s) High Council of Public Health predicted that between 2009 and 2050, up to 100,000 French citizens could die from asbestos-related diseases such as mesothelioma and cancer of the lungs, larynx, and ovary. That equates to the elimination of the population of a city the size of Nancy, Montreuil, Nanterre or Avignon.

The consequences of inaction are known. The tragic situation of a Canadian Professor with the deadly asbestos cancer mesothelioma is featured in the current issue of the CAUT trade union bulletin.1 Sixty-two year old Patricia Martens is a distinguished research scientist in the University of Manitoba’s faculty of medicine. She believes that workplace exposure to asbestos caused her disease. She is not the first of her colleagues to be affected; anthropology Professors William Morgan and John Matthiasson died shortly after receiving mesothelioma diagnoses in 1994 and 2001 respectively.

And yet, it seems even in the face of the personal tragedies of these and other Canadians, lessons have not been learned. Today (September 24, 2014), it has been reported that refurbishment work at Nunavut Arctic College in the Northwest Territories has been carried out with a complete lack of protection for the workers as well as staff and students who continued using the premises during the deadly renovations.2No risk assessment was carried out even though it was known by the authorities that the 1950s building was constructed with a range of asbestos-containing materials including drywall, ceiling tiles and vinyl flooring.

Who knows what the consequences for those exposed to asbestos during this incident will be. In a country where asbestos was once king, it seems that policy makers and government officials continue to turn a blind eye to the killer dust. It doesn’t need to stay this way. Canada, for so long a part of the problem, could become part of the solution. The first step is to outlaw the use of asbestos! The next is to work with federal, provincial and municipal stakeholders to develop an integrated and detailed program to address the country’s asbestos legacy. An asbestos-free future is possible – even in Canada!

Asbestos Disease Awareness Organization (ADAO)


The Asbestos Disease Awareness Organization (ADAO) is the largest independent asbestos victims’ organization in the U.S. It was founded in 2004 to give asbestos victims and concerned citizens a united voice, to raise public awareness about the dangers of asbestos exposure and to work towards a global asbestos ban. ADAO is dedicated to preventing asbestos-caused diseases through national and international education, advocacy, and community initiatives.

Linda Reinstein became an activist after her husband, Alan, was diagnosed with mesothelioma in 2003. Her search for answers led her to the realization that she and Alan were far from being alone. In 2004, she co-founded the Asbestos Disease Awareness Organization (ADAO) to reach out to those who have been affected by asbestos-related disease. Now serving as President and CEO, Reinstein has focused the power of the social networks to instantly unite those affected by asbestos-related disease, and those fighting for a ban on asbestos in the U.S. and elsewhere. She has frequently served as a U.S. Congressional witness and has also presented persuasive testimony and keynote speeches for organizations like the United Nations, U.S. EPA and the British House of Commons. Since 2004, Reinstein has been a strong political voice for justice in every major asbestos-related issue.
Also the US has The Meso Foundation (formerly MARF) is the only non-profit organization dedicated to ending mesothelioma and the suffering caused by it, by funding research, providing education and support for patients and their families, and by advocating for federal funding of mesothelioma research.

Run by Mary Hesdorffer who is a Research Nurse Executive Director at Mesothelioma Applied Research Foundation.

Mary Hesdorffer received her undergraduate degree at the College of New Rochelle in NY and went on to receive her Masters of Science at the same institution. She is fully credentialed as a Nurse Practitioner and has spent 16 years actively treating patients with mesothelioma.

Mary has an expertise in the development and implementation of clinical trials. Her work has been published in peer-reviewed scientific journals and she has lectured nationally on the topics pertaining to mesothelioma with particular emphasis on clinical trials as well as symptom and disease management.

Mary has been a strong voice in urging increased transparency to the medical and legal issues surrounding mesothelioma with a strong emphasis on ethics.

She is passionate in her commitment to the treatment and management of this disease and hopes to increase awareness of the need to advance the science that will lead to a cure. She is available via phone or email to assist patients and caregivers as they move from chaos to control of this new situation they find themselves thrust into.

These three women will be at the Cape Town, South Africa from 21 – 24 October 2014 for the 12th International Mesothelioma Interest Group Conference – the world’s premier medical congress on mesothelioma. Our theme is the ongoing quest for cure. It will be hosted by the South African Mesothelioma Interest Group (SAMIG), and held at the Cape Town International Conference Centre (CTICC) which is optimally situated in the city bowl, with the Table Mountain amphitheatre as the backdrop

We have a lot of Mesothelioma Nurses attending this meeting.

The aims of SAMIG include:
1. To establish a South African interest group with the necessary infrastructure to host the
International Mesothelioma Interest Group (IMIG) conference of 2014 to be held at Cape
Town International conference Centre.

2. To establish an accessible panel of SA specialists with a particular interest in this disease who
would be able willing to provide information and support for sufferers and their families as
well as medical advice to their managing clinicians.

We will have to see how this week pans out and what the HSE will do to rectify the damage they will cause im the Industry and the home. You can see we are very disjointed here in the Uk and this really needs looking at. We have banned Asbestos her in the UK but who would have thought it is still causing such an uproar. I hope that it can be resolved and that Asbestos dangers are not made so light.




Here are the comments so far on the IATP Newsletter. IATP have hade mainy emails as well

  1. OMG, the HSE web app a little knowledge is dangerous, i wonder if the environment agency has seen the guidance it gives for the waste asbestos?

  2. I cannot believe that HSE really can say that 2 hours of DIY working with Asbestos is safe. This is so dangerous as It only takes one fiber to cause mesothelioma 30/40 years on. What about Insurance as they wont agree to that advice. You fail to say that you have to double wrap the Asbestos and that it is hard to dispose of it so take small amounts to a Asbestos disposal Station.
    You really have to rethink this and you have thought about this. Asbestos needs to be handled by the experts.

  3. I am totally horrified by this new ‘app’.
    For years I’ve been telling tradespeople how dangerous asbestos is and this app contradicts every safety aspect going. Drilling AIB? Licensed contractors are advised against power tools so why is it now ok for the public to do this? This is crazy. A very sad day for the people who have faught so hard. HSE? What a joke.

  4. FACT: There is no safe minimum where asbestos is concerned.
    So on what science is the 2 hour limit based?

    FACT: too many people have died for too long based on inadequate guidelines.

    HSE you have a chance to put this right don’t waste it

  5. Mavis keep up the good work.On a more sober note these outfit’s are formed to take the heat off the industry, in Canada we have WCB site they advocate for free testing for asbestos but what most people do not understand when you take their free test you automatically fall under the WCB act, the employer is protected from lawsuit hell even your doctor is protected under this act.

    The WCB of Canada were involved in the coverup of how deadly this product was for years the fox now is trying to convince the chickens that they are really good guys just looking out for their best interest!

  6. In principal this is a good idea. However there is no reference to the legal requirement to be trained or wear appropriate FFP3 mask with face fit testing. Those two items alone would protect even an idiot (although possibly not those around him)

    I really can’t believe that senior sources within the HSE have allowed this APP out in its current format. I think they are potentially leaving themselves open to criticism and worse, culpability if someone is exposed to asbestos because of the omissions in this APP


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