A Diary Of A Mesowarrior Living With #Mesothelioma My travel to #asbestos conferences all in one week its been so busy.







We did finally arrive at Longbridge after a long train journey to London across to Euston then up to Birmingham New Street then on a slow cross country to Longbridge.

We finally arrived in a taxi to the JUAC Asbestos in schools Conference at Hillscourt Conference Centre. We had arrived the day before so not many were there with us but we did have a great discussion with 3 members and our eyes have been opened by the problem of teaching in this day and age.

This is the Video Ray did for the JUAC

after a great nights sleep and breakfast everyone joined us in the Conference room. So great to meet so many people who wer known to us through Social Media and The House of Commons

JUAC Asbestos in Schools Conference – 4 July 2017
The first national conference addressing the issue of how to protect children and staff from the dangers of asbestos in schools and colleges is being held on 4 July 2017 at the Hillscourt Conference Centre, Rednal, near Birmingham.  The conference is organised by the Joint Union Asbestos Committee (JUAC), a non-party political campaign which aims to protect children and staff in schools by promoting awareness of the dangers of asbestos and the need for improved management.
The continuing presence of asbestos in our schools is a scandal, as is the shocking lack of consistency in the way in which it is managed across the country.  Around 86 per cent of schools contain asbestos and deaths from mesothelioma are increasing.  In 2014, 17 teachers aged 74 and under died of mesothelioma.  The total number of support staff deaths is not known.
Of even greater concern, particularly to parents, is that children are at an increased risk of developing mesothelioma in later life, because of exposure to asbestos at their school.  It is estimated that 200 – 300 former pupils are dying each year as adults because of exposure at school during the 1960s and 1970s. This number is likely to increase considerably because many of the system buildings, such as CLASP, with the most asbestos are deteriorating and inadequate funding and support is available for necessary maintenance, renovation and demolition.
Freedom of Information Data obtained from local authorities indicates that at the current rate of funding it will take another 50 years for potentially dangerous CLASP schools to be demolished.  Only 25% received funding for repair, maintenance and demolition between 2010 and 2017.  This FOI CLASP School data is available on line at https://www.whatedotheyknow.com and a summary of the preliminary findings is available at http://www.juac.org.uk/ .
Recent Freedom of Information (FOI) requests to all local authorities in England and Wales have revealed that over £10 million has been paid in compensation to former school staff and pupils as a result of asbestos exposure. The FOI requests, available online at https://www.whatdotheyknow.com/user/lucie_stephens/requests, reveal a shocking disparity in how asbestos in schools is being managed, with some LAs stating they do not hold this information, despite being the legal duty holder.
JUAC is currently repeating this FOI exercise with Multi Academy Trusts, in order to establish a national picture of which schools contain asbestos, something the DfE has so far failed to do.
JUAC’s contention is that the policy of managing asbestos in schools is simply not working and is putting children and staff at risk.  JUAC calls upon the Governments in England, Scotland and Wales to:
undertake a national audit of asbestos in schools;
set out a long term strategy for the removal of asbestos from all schools; and
ensure that the Health and Safety Executive has the funding it needs to routinely inspect schools.
The 2017 Labour Party Manifesto included a commitment to remove asbestos from all schools, the first time any political party has made this pledge. JUAC calls on all parties to confirm their commitment to protecting our children and school staff from this hidden killer.
Rachel Reeves MP, who chairs the Asbestos in Schools Group, will address the conference and there will be speakers representing the trade unions, the DfE and HSE, alongside medical and other experts in the field.   Delegates will come away with a better understanding of the hidden dangers that asbestos poses to pupils and school staff, and what needs to be done to keep them safe.
Speaking about the conference Rachel Reeves MP, Chair of the Asbestos in Schools group said:
“The 2017 Labour Manifesto committing to a phased removal of asbestos in schools was a step-forward, recognising great work by trade unions in bringing attention to the issue. The JUAC conference is an opportunity to continue this work. It is unacceptable that we continue to put pupils and staff at risk. The Government should follow this lead and commit to a phased removal.”
Kevin Courtney, NUT General Secretary, said:
‘The continuing presence of asbestos in our schools is a national disgrace, putting at risk the health of staff and children. This conference will shine the spotlight on how asbestos is managed and by bringing together representatives from Government, the HSE, the medical profession, those who work in the field, employers and trade unions we hope that all parties will share a better understanding of the need to do more to protect the occupants of schools and begin a national phased programme of removal.’
Mary Bousted, ATL General Secretary, said:
‘It is shameful that the government continues to ignore the simple fact that as long as asbestos remains in school buildings children and staff are at risk of entirely preventable illnesses. This conference will bring together experts in asbestos to promote a better understanding of its dangers and agree how best to ensure the safety of those who work and study in our schools.’
Chris Keates, General Secretary of the NASUWT – the Teacher’s Union said:
“The NASUWT has long campaigned for the phased removal of asbestos from schools, and the fact that over 70% of schools still contain this lethal substance is unacceptable. Asbestos is a silent killer and its continued presence in schools means that hundreds of thousands of teachers, support staff and our children and young people are at risk of being exposed every single day.
The NASUWT is pleased to host this Conference which will focus not only on the dangers of asbestos but also, in the absence of a coherent removal plan,  how asbestos can be managed to minimise risk to all teachers, support staff and pupils.”
Russell Hobby, NAHT General Secretary, said:
“Asbestos in schools is a serious and often neglected issue, and the Joint Union Asbestos Committee (JUAC) conference will help highlight the dangers to school leaders, teachers and pupils. It is now clear that a national audit of asbestos in schools is needed, leading to a long term strategy for the phased removal of all asbestos. The school estate is chronically underfunded, with the National Audit Office estimating that there is a £6 billion gap in capital investment just to return school buildings to a satisfactory condition. We need a national debate on how this gap can be tackled. Every pupil deserves to be taught in high quality, safe and secure school buildings.”
Unite general secretary Len McCluskey said:
“It is a scandal that the health of our children and teachers is being jeopardised because of the continued presence of asbestos in schools. Government ministers need to act and understand there will always be a danger as long as this silent killer is found where someone could be exposed to it. This conference will not only deepen understanding, but also discuss positive steps for the safe removal of asbestos from our schools and ensure its deadly menace is lifted for future generations.”
UNISON general secretary Dave Prentis said:
“Cuts to budgets have made managing asbestos in schools a great deal more difficult. And forcing schools to become academies has made it harder to know where the responsibility for this deadly hazard really lies.
“This is putting the health of pupils, support staff and teaching assistants, at risk. The only way of eliminating the damage done by asbestos is its phased removal from all schools and public buildings. The Government must rethink its policies not only on asbestos, but on school funding and academies as well.”
Click here to download a copy of the press release.
John McClean – 07710631329


Lucie Stephens a mesowarrior gave a lovely if very sad story of her Mothers Mesothelioma. She was in tears and so were we all.

Paul Beaumont gave a very inspiring talk and he said how he would like to do Asbestos Awareness and Training Free for the Schools. I know that has been a long plan of his as we have known each other a long time.

I couldn’t believe that my dear friend had come all the way from Italy and he also acted as translator for Maria Angeles Guzzman Merchan who campaigned to have asbestos removed from her Spanish school and others have now followed her.

Cenric Clement Evens also spoke he is another friend I have met with at the House of Commons.

That was it the conference came to a close and everyone shot of home leaving us on our own again.

We had a dinner then went to our room to work.


Off in a taxi and then train back to New Street and up to Derby. Here we arrived got in a taxi and it felt like we were going to Scotland. The Hilton Hotel is £20.00 away I thought he was never going to stop.

So many people we knew again and if we didn’t we soon became firm Linked in Friends.


Craig had booked me for over a year he had such faith I would still be here bless him

Everyone had to changed for the evenings dinner and of to settle for a good sleep as the next day was the AGM and Conference.

The AGM and Asbestos Conference of the UK Asbestos Training Association (UKATA) on Thursday 6 July is now open for non-member registration. An unprecedented level of interest from UKATA members in the 2017 event means places for non-members are already limited.
The event at The Hilton Hotel East Midlands runs from 10.30am – 2.30pm and includes keynote speeches from the complete spectrum of the asbestos sector – from world renowned experts like Professor Roger Willey to the inspirational mesothelioma survivor Mavis Nye.
“The UKATA AGM and Asbestos Conference have heard from many diverse speakers over the years, but the ninth event is shaping up to be our best yet, which accounts for the number of members who have opted to join us this year,” said UKATA Marketing Officer, Victoria Castelluccio. “Professor Willey’s reputation is a big draw but Mavis giving a survivor’s perspective I’m sure will pack a punch.”
Other speakers include Dr Martin Gibson from the Health and Safety Executive (HSE), Harry Steinberg QC and Seamus Lefroy-Brooks. Topics set to be covered by speakers include current regulations and life with Mesothelioma; while a discussion of CAR:SOIL, Asbestos in Soils and Site Investigation will bring delegates up to date on the latest thinking on this emerging topic, while asbestos litigation and what to expect from HSG 247 & 248 will complete the picture of a packed day of education and revelation concerning asbestos awareness, safety, training and personal experience.
“The Grenfell tragedy has pushed health and safety to the top of the agenda and as the UK’s biggest workplace killer, asbestos has a very prominent place on that list,” added Victoria. “There is rightly going to be no hiding place for those failing to comply with regulations and it is therefore no surprise this year’s AGM and Asbestos Conference will be the best attended yet by those working in the world of asbestos and hazardous materials.”
UKATA exists to set and verify standards and to emphasise the importance of best practice in training when it comes to the safe handling, removal and disposal of asbestos. Tasked by the HSE in 2008 for taking-on, managing and developing the list of training providers for licensed asbestos work in the UK, UKATA is now the leading authority in all levels of asbestos training in the UK. For further information on UKATA, visit www.ukata.org.uk
Victoria Castelluccio

I waited patiently for Harry Steinberg to arrive and to give him a Mavis Hug-I did plenty of that over the course of these days away






So we all settled down and we listened to amazing information.

Ray and I gave our presentations. having allowed Ray to go first he had everyone in tears so I had to work hard at cheering  everyone up.

I clicked away and they all seemed to like what I was talking about. There were some big business men there I was so pleased when they said they agreed with everything I was talking about. Its not easy to put across what my fears are for the men that work in the Asbestos removal industry.

Harry spoke about Law of course and the different cases he has had to Bring to the Court.

The HSE seem to have their figures different to the BLF they say 5000 people have died each year where as BLF say 2500 so I was able to talk to BLF when I got to London and have questioned this.

Asbestos in soil is another thing that I hate and know is a problem.

UKATA Run a good course on the subject This course is for  ‘Supervisors, Managers and CDM Duty Holders’ engaged in work on sites that have been identified as potentially having asbestos containing materials (ACMs) within the soil on site in accordance with the Control of Asbestos Regulations 2012 (CAR).
The course will assist delegates to meet their legal obligations by providing them with an explanation of the properties of asbestos and its effects on the health of individuals, the types, uses and the visible manifestation of asbestos in soils and the understanding and interpreting soil reports. The course will also highlight the general procedures that need to be followed in the event of an emergency and how to avoid the risks from ACMs in soil.
Course Objective
To provide delegates with: –
The theoretical skills to undertake work on sites (brownfield and greenfield sites) which have been identified as having asbestos containing materials within the soils; or in which asbestos containing materials have been identified (i.e. from previous construction or demolition operations or previous pipe bursting operations or repairs on asbestos cement water mains in which the ACMs have been left on site).
An understanding of the appropriate action that must be taken in the event of non-notifiable and notifiable asbestos containing materials being identified/recorded within the soil analysis report; and or being identified on site in accordance with the CAR 2012.
An understanding of the emergency procedures that must be implemented in the event of ACMs on site accidentally escaping their control.

Soon that all came to an end and we had to say goodbye and booked a taxi. We had decided to get down to London and booked into a hotel. It was late as we arrived and caught the tube. It was so hot down then I couldn’t think. I went wrong and could see Ray was worn out so suggested we got a taxi. The driver couldn’t find the road and we travelled around that he even turned the clock off.

London has closed down so many roads and you have to ask to travel through then an unseen person lets the bollards down.

I just went straight off to sleep fully clothed and that’s how I woke up.

The weather was lovely as we walked over London Bridge. The scene of that horrific incidence a few weeks ago. Bollards have been put on the bridge now so  it cant happen again.

We hadn’t told LASAG that we were coming so we had shocked everyone. I loved the reaction.

We sat in the Courtyard of Southwark Cathedral enjoying the sun I couldn’t face the service as I would get to emotional and upset myself for the rest of the day

Everyone joined us and The doves were set free in the courtyard as we were then entering the Cathedral and went up stairs to the Conference Room

Linda Reinstein who had travelled all the way from the US to join us in the UK Mesothelioma Action Day  talked about the spy case that we have all been involved in.

 He had been at iMIG and had listened to me that is a frightening thought so I know how IBAS and ADAO must  as they had more to do with him than I did.

Dr Peter Szlosarek  spoke about the latest Trials he was involved in and he gave a huge grin when he came to talk about me and immunotherapy. he always does and I love the cheeky smile.My dear larger than life friend a US Lawyer Brendan Tully spoke about his cases he has fought and Talcum powder. I had really surprised him and he just didn’t know I would be there. It left him saying I just don’t believe this.

After Lunch Philip said I was speaking. all the lawyers had stood down so I could talk about my Foundation. EkkRay had to get my pen that lucky enough I had from UKATA speaking. So I adlibbed through and it went down well again.It was soon all over and we went to the pub and had a much needed drink, where we then said our goodbyes and set off back over the bridge to the Underground. So many steps all the time but we had so many lovely young people help us with our case up the steps.I did have a pick pocket try and get my bag open under his coat. Ray punched his arm away as another young man threw him off the train as we had pulled up at a station. That had everyone talking and laughing we almost missed Victoria.I was so pleased to get on the train and arrive home.What an adventure I have loved every minute.

I would like to thank UKATA and JUAC and All the lovely people we have met you have all made our adventure wonderful xx






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