Living With Mesothelioma — The Saatchi Bill has been drafted and will be read in House Of Commons

https://twitter.com/SaatchiBill

I have recieved an email

Morning, Mavis,
I’m writing to update you on progress on the Medical innovation Bill.
We’ve been intentionally quiet over the past few weeks since the Department of Health closed their public consultation into the Bill.
We needed to look hard at the feedback we received, and take it into account as we worked on a new draft Bill, which we can now reveal to you.
The consultation has drawn us to four conclusions.
1/ Patients and many doctors and institutions want the Bill. We received more than 18,000 responses with very few against.
2/ Doctors are not clear on the law as it stands – some tell us they can innovate now, others say they can’t.
3/ Medical negligence lawyers are against the Bill and say it isn’t necessary.
4/ Many have told us that for the Bill to lead to new treatments, we need to ensure that the results of innovations – positive and negative – are recorded and shared.
You may know that the DoH version of the Bill was, in our view, muddy. Our new draft Bill, which will be introduced into Parliament on Thursday (June 5) is clear, concise and clean. We are confident now that all pertinent concerns have been addressed in the latest draft, which I have attached. The intention is to give doctors clarity, confidence and certainty in law from the start.
In short, the new draft Bill makes it clear that a doctor must get the agreement of a responsible and relevantly qualified body of medical experts as well as the consent of the patient. We have added another safeguard – that the doctor must also get the agreement of her or his responsible officer.
We have added to this an explicit clause that says that a doctor doesn’t need to use the Bill – s’he can rely on the law as it stands (known as the Bolam test) if s/he prefers.
If the doctor does all this, s/he can be confident s/he will be protected – from the outset. The law now offers doctors who innovate a defence, but this means that the doctor has to hope they will be found not guilty and in the interim they have to suffer the stress of a court case hanging over them.
Why would they risk that?
We are also committed to adding in a new clause at the earliest opportunity as the Bill proceeds, stating that a doctor must register all innovations, so that they can be shared with other doctors and patients.
(We did not add this into the draft Bill because initially we felt that we did not want to impose a legal duty on doctors to register innovations and add a bureaucratic hurdle to innovation. We were working with Oxford University to develop a voluntary register, outside the Bill. However, we have been persuaded that this must in fact be in the Bill itself).
This morning Prof Mike Rawlins is due on the Today programme approx 8.30 to discuss the Bill – although of course that may change!
Please find attached the new Bill and guide and you can also find it here: http://medicalinnovationbill.co.uk/the-new-bill/
Anyway, for now, thank you for your patience and forbearance.
With kind regards,

lord saat

THE NEW BILL

A new Medical Innovation Bill has been drafted following the Department of Health’s public consultation into the Medical Innovation Bill which ended on 25 April 2014.

The consultation was designed to gather opinions as to whether the Bill was wanted and how it might best work. In other words, it was intended to obtain robust feedback in order to improve on the draft Bill.

Incorporating feedback

The overwhelming response from the more than 18,000 patients, doctors and institutions who responded was a clear vote in favour of the Bill.

The Bill team does not wish the Bill to be used as a guise for reckless experimentation and thus, the Bill states that it may only be used in the best interests of the individual patient.

Respondents also gave firm feedback that the Bill must be clearer on how it was to ensure that there was no room for the quack to use the Bill as cover for reckless experimentation.

So the new draft Bill is explicit and clear – a doctor who wishes to innovate cannot claim protection under the Bill without using a transparent and accountable process to consult a range of expert colleagues, including the doctor’s responsible officer and any relevant multi-disciplinary team, – only with broad consensus from colleagues will a doctor feel safe in relying on the protection provided by the Bill, which is the intention.

Sharing innovation data

Many also argued that for the Bill to work and to drive new treatments for hard to cure and currently fatal diseases data from innovative treatments must be collected and be capable of being shared among patients and doctors in an open, transparent and accessible manner.

Recognising the importance of collecting evidence and data from innovative treatments, the Bill team is committed to working with Oxford University who have agreed to develop a method of data collection and sharing which arise from the Bill.

Specially, following feedback from the consultation, we are committed to including an obligation on doctors that they must register innovative interventions in order to be protected by the Bill.

This obligation will be included as part of the statutory process during the Public Bill Committee Stage in the House of Commons.

→Download and read the guide and new (draft) Bill – published June 2nd 2014

 

Living With Mesothelioma -My Diary- I have had a positive result so Im in my Trial MK3475- Wonderful Weekend Sun Sea and a good Wine -IATP Newsletter is so interesting

I have had a great weekend away at Palm Bay School Clifton Ville.

I needed this -sun sand and a good wine.

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We all parked up in the playground and chatted away on a lawn we found.

 

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Still love my little M/Home xx

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Time for a read.

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People were having fun in the blue sea.

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This sailor couldn’t get his boat to start

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He did make it in the end.

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Louis had a chase up and down with the waves and now we are home he is worn out and fast asleep.

It has been a wonderful weekend.

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There is so much happening I cant keep up with it so a bit at a time.

No 1 is I have had a phone call to say my bi-op test was Positive. I really broke down in tears Friday To the Doctor. I think hth Junee realised how pleased I was .

So I have had a lot of info sent to me and still not what the Trial is really about in it official capacity. I dont think its been written up yet as it is all to new. That doesn’t Phase me. I wanted to be the first and that is such good news to me.

I will have a  scan after the second dose to see what is happening. lets hope something is working so I can go on to the end of the trial.

So Wednesday I go to sign more paperwork and to sort so more tests ie a scan etc etc.

Then I will be given my start date.

Ray and I have been sorting out the fact I have to go in and stay a night when the drug is given to me so thats all sorted and wont be a problem.

I have had a email and all the train times to also give a talk in Manchester at an Oncology Forum that is looking good.for the 19th June and I have to write a piece about Mesowarriors and how we all came about so I will do that tomorrow. Its all very busy at the moment and I just love it.

http://us6.campaign-archive2.com/?u=83cbdd8ae32756eaf366c6e33&id=4481024f06&e=313cfdcfda

I love the IATP News letter this month. Not because Im in it but because Bernie Banton Foundation is and a report about their plans for the future.

We all know our Aussie Rod as I have often talked about his through my 5 Years of skyping and we have had long chats through the night.

Mobile Asbestos Education and Awareness UnitThe Bernie Banton Foundation’s Mobile Asbestos Education and Awareness Unit has been developed as a mobile one-stop asbestos education and awareness shop.It has been created to take the subject of asbestos to the masses and make it a topic people are interested to know about!To save on touring costs the unit has rudimentary living quarters, office facilities [including printing and brochure making equipment] and storage area.

It is fully self-contained, and will be able to be set up literally anywhere within minutes.  It has a large roll out awning, and its own power source (12 volt battery powered aided by solar power, with 240 volt silenced generator backup).  Internal natural light and ventilation is via roof skylights (with fan assist) above the sleeping, living and office/storage areas.  This was done to allow clear space on the sides of the unit for promotional branding, without having to allow for windows, etc.

In addition to the mobile unit, to allow added flexibility, it is equipped with two ‘stand alone’ (joinable) 3×3 metre (10ft x10ft) heavy duty ‘branded’ marquees (suitable for indoor and outdoor use) with matching branded banners.

To add to the ‘wow’ factor, it is also equipped with two BBQ hotplates, a coffee machine, as well as an ice chest for cold drinks.

All promotional equipment has been designed to be multifunctional, allowing for use indoors or outdoors.  Equipment carried includes: tables and chairs; fold up display lecterns; A4 leaflet/brochure display stands holding an extensive array of literature; desk; 2 x 12 volt/240 volt video screens with inbuilt DVD players (with own power packs); and a projector with screen for use in indoor venues.

Editorial contributed by Rod Smith BBF Director & Operations Manager

The Asbestos Lie

The Asbestos Lie

The shock waves from the May 22, 2014 European elections continue to reverberate. For someone who sees much of the world’s news through an asbestos filter, the success of the United Kingdom Independence Party (UKIP) is very worrying. In 2013, a UKIP Member of the European Parliament (MEP) Richard Helmer denounced plans to safeguard EU citizens from the asbestos hazard stating that there is “zero risk from white asbestos.” He accused “ambulance-chasing lawyers” of underwriting the attempt by politicians, trade unions and asbestos victims’ groups to implement measures to protect public and occupational health. Unsurprisingly, he cited a paper by scientists working for asbestos defendants to substantiate his claims. There is no shadow of a doubt that with 24 UK MEPs, 31% of the total UK allocation, more attempts will be made to roll back EU asbestos directives.

It was some comfort that at the same time as the developments discussed above were unfolding, news was received that a seminal work about Europe’s asbestos catastrophe had finally been published in English. The original German version of the book – Die Asbestluge [The Asbestos Lie] – by Swiss journalist Maria Roselli had appeared in 2007; it was followed the next year by the French version: Amiante & Eternit: Fortunes et Forfaitures [Asbestos & Eternit: Fortunes & Forfeits]. The Asbestos Lie was published in hard copy and also uploaded to the web by the European Trade Union Institute this month (May 2014).1 While a leading academic has agreed to produce a detailed review of this translation for the IBAS website, it is nevertheless appropriate at this time to point out that one of the asbestos lies highlighted in this book is the attempt by industry stakeholders to “whitewash” chrysotile asbestos. Ms. Rosselli writes:

“The asbestos lobby is still using its old tricks in developing and emerging countries that they used here thirty or forty years ago to interfere in the political process to thwart a solution: there are still the in-house or subsidised studies from ‘scientific’ institutes close to the industry purporting to substantiate the harmlessness of chrysotile. At scientific symposia organised and controlled by asbestos companies pseudo-experts play down the dangers of white asbestos… In this way it’s possible for national governments to still swallow the lie of ‘controlled use’ – risk-free use of asbestos.”

Some months before she died, UK mesothelioma sufferer Debbie Brewer reached out to Richard Helmer to tell him about her deadly battle with asbestos cancer. In his dismissive response, the MEP informed Ms. Brewer that: “the fact that you suffer from this disease is not evidence that it was caused by white asbestos. There is clear government research showing that white asbestos (as distinct from blue/brown asbestos) poses no measurable health risk.” Helmer is categorical that his priority is:

“the huge and unnecessary costs that would be inflicted on the British economy generally (and in particular on farmers, who often have large corrugated asbestos cement buildings) if they were required to replace this material.  I am particularly incensed that this whole attempt to vilify white asbestos is driven by commercial interests seeking to profit from the wholly unnecessary and egregious economic damage they propose to inflict on thousands of businesses and the economy generally.”2

It seems that in the world according to UKIP, the thousands of lives sacrificed to asbestos count for nothing just so long as UK plc can off-load its liabilities and increase its profits.

Contributed by Laurie Kazan-Allen IBAS
I had to draw these two Write ups out to share but please go in and read the whole Newsletter as it is so bright and informative for UK reading