A Diary Of A #Mesowarrior Living With #Mesothelioma #ASbestos – Result Of My Scan and My Day In Parliament


I have so much to write about so lets start with my Scan result.

It is still the same. Stable and Benign. Its been a busy time travelling back and forward to the Marsden and today the traffic was so bad but Ray is so good he always gets me there on time. Bless him x

Well this news has to take second place to my day yesterday.

We had been invited to the House of Lords and to the All Party Parliamentary Group On Occupational Safety and Health Asbestos Sub Committee. I have attended before but this was momentum I’m in awe of People involved.

Laurie Kazen Allen of International Ban On Asbestos And British Asbestos IBAS.

HASAG

Asbestos victim’s Support Groups Forum UK

DAST

So many people fight our corner no more so than Ian Lavery MP, Jo Stevens MP and Lord Hunt of the Wirral who chaired the meeting.

The Agenda was :-

Diffuse Mesothelioma Payments Scheme.

They have made a note that Pleural Plaques should come into this payment scheme.

National Mesothelioma Centre

Prof Sir Anthony Newman Taylor spoke on the development of the Centre and that we must build on the Governments £5million as that will help to set it up but it then needs more funding to run the scheme.

(British Lung Foundation were in the debate at the same time securing the scheme and Dean Fennel was speaking as well.)

(I came home to an email from BLF telling me they would be announcing it today. https://www.blf.org.uk/your-stories/5-million-for-life-changing-mesothelioma-research

Today we’re announcing a game-changing donation for people living with mesothelioma.

We’ve secured an amazing and generous gift of £5 million from the Victor Dahdaleh Foundation, which will fund mesothelioma research to make new treatments a reality.

This donation is the largest ever to be made to the British Lung Foundation.

Our progress so far

We have a long history of funding UK-based research into mesothelioma, a deadly asbestos-related cancer that affects the lining of the lungs. We’ve already invested over £4 million on ground-breaking research in this area. This makes us one of the biggest funders of mesothelioma research in the UK.

The funding we’ve received over the last 5 years has helped us to transform the mesothelioma UK research landscape from one of neglect and disinterest into a thriving network of investigators committed to delivering real benefits to people affected.

Our work to date has set a solid foundation of mesothelioma research across the UK, which will allow us to really make the most of this upcoming funding opportunity.

The recent studies we’ve funded have produced some truly exciting results including:

  •  New ideas for increasing the success of radiotherapy
  • The development of immunotherapy where the body’s immune system is boosted to fight the cancer
  • Using stem cells to accurately target cancer-killing drugs to the location of the cancer, while sparing healthy tissue.

The next steps

While there’s now a lot to be hopeful about, much more work is needed to translate these concepts from promising laboratory ideas to successful real-world treatments.

This means investing in further research, including clinical trials that will test new treatments in people, making sure that they are safe, effective and have the desired results.

This additional research will cost many millions of pounds, so we still need huge amounts of investment to turn new treatment ideas into reality.

Thanks to this funding from the Victor Dahdaleh Foundation, we have set up a Mesothelioma Research Network, and at the wishes of the donor, the University of Leicester and Papworth Hospital will be the first members. It will also include Imperial College – who earlier this year received the government’s £5 million pound investment to become a National Mesothelioma Centre.

By working together we are ensuring that mesothelioma research is joined-up and collaborative. We want to make sure that efforts aren’t unnecessarily duplicated, with researchers sharing data and pulling in the same direction, making the best use of the precious funds available.

This huge boost to funding and the new network is great news. It will accelerate research and bring us closer to effective treatments and, one day, hope for a cure for this devastating disease.

To help us continue to fund further research, we still need your support. Help us continue our work by making a donation today.

Exciting times for Research.

When Ian Lavery asked if we had any comments I asked if I could ask a silly. Could they spend just a little bit of money and research why I have had such a great result and no one else has had Mesothelioma Complete response.

Sir Antony was in complete agreement that they should look at my genes and bi-op and Reasearch why and he has taken all my details and will talk to Dean Fennel

Companies House

They are proposing to destroy dissolved companies records. –this cannot happen as we relie on these records for when Mesowarriors make a claim from their company.Also Insrance companies use them and Lawyers when suing for injuries etc.

Ian lavery Mp said it was more that it had been asked by some people and yes they didn’t understand just what that would mean to people and information so yes he has noted this and will action as the Police have also made it known they use the records as well when investigating Fraud etc.

HMRC work history delays

To receive a report on delays in receiving HMRCwork histories and to consider possible action.

Well I didn’t know what this really meant so I looked it up and there is a report —

The problem has been caused by those seeking access to older records of work histories, held on microfiche which can only be accessed on readers at HMRC’s Newcastle base.

This makes the task of accessing these records laborious and means it now takes 14 months for a claimant to receive a copy of their work history.

Mr Tyrie said: “HMRC needs to reduce these delays. Those who suffer from life-threatening diseases, such as asbestosis, deserve at least that.”

He added HMRC should be more transparent about how it priorities claims and the barriers that have led to the current delay.

Mr Tyrie said HMRC should supply its overall strategy and timetable for reducing the delay, and the specifications of the microfiche readers, including their model and manufacturer.

In order to claim compensation from former employers or their insurers, victims of occupational diseases need a full record of their employment history, including a work history produced by HMRC providing the name of their employer in any given tax year, going back decades.

But HMRC chief executive Jon Thompson said the microfiche machines are now operating far beyond their envisaged lifespan and when they break down they are difficult to repair as parts are not easy to find.

The problem is exacerbated by the fact many victims, particularly in the construction industry, will have been employed by many different employers over the course of their careers.

Living mesothelioma victims have their cases priorities by HMRC.

https://www.ftadviser.com/2016/07/29/regulation/hmrc-told-to-get-on-top-of-work-history-delays-dLmUbQSsDz25I7wM000TlI/article.html

Yuanda UK

Laurie told how she had contacted Yuanda UK about the suspicions of imported asbestos products used in the UK and Products like cement could have Asbestos in them as the Australians have found. Yuanda are denying it is happening but it has uncovered the shortage of Trading Standards to do their job properly.

I raised the fact the Flask from China have got through. As I was sent a report so they are interested in me emailing the report over.

The Report from the Welsh Assembly couldn’t happen as no one turned-up ?

Mesothelioma Network

This was what I had gone to London Last week to be involved in the drawing up of this proposal.of bringing together a UK Coalition. Laurie asked me to give my opinion of the meeting. I said I was honoured to be involved and was amazed at how in the 7 years have been diagnosed things are really changing with so many people backing is mesowarriors that have the disease.

The idea is to bring together all the charities and groups in the UK and join the coalition so we all sing from the same hymn book and have a bigger voice to get things done.

This will need to be funded so the report was handed in.

Iban Newsletter was the last thing on the agenda. Laurie presented her 100th edition of the news letter.

I have been helping her in a small way to pass this around and have managed to get it to Australia and the Netherlands as well as several Universities Libaries.

I took it to al the conferences and meetings I went to.

Laurie handed it around and some of us joined in the photo that was taken dscf8062

LAUNCH: In Nov 1 of issue 100 of British newsletter.

 

 

Then we showed our SOLIDARITY: Of British activists with Italian colleagues – dscf8060-copy-copy

We said our farewells and went to the pub for a drink and then we hd to go home in the rush hour. It was so bad with tube trains like Japan squashed in as the doors closed.

The we got on our train to Whitstable and it was packed. These poor people have to do it daily and I just don’t know how they do it.

A very interesting day.

 

 

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