Living With Mesothelioma -My Diary – I do understand the Saatchi Bill discussion on Twitter today.


On Twitter I have been discussing the Saatchi Bill as a Doctor is saying I dont really understand it. It is so hard to discuss in just a few words (Thats Twitter) but I truly believe I do understand the Bill and it does apply to my case.

I was looking for for 5th line Chemo. It is not available to a mesothelioma Patient though. It was a case of no more treatment and with my body chemo damaged with peripheral neuropathy where I was losing my balance and falling over and Edema which  is a condition of abnormally large fluid volume in the circulatory system or in tissues between the body’s cells.

I was a mess I know.

I went looking for my own treatment and then went to the Royal Marsden where they are an Innovation Hospital. I put all my faith in them and would have taken any treatment to prolong my life. Any experimental Innovation.

I had backed the Saatchi Bill and been to the House of Commons to Lord Saatchi’s presentation of the Bill and listened to his every word and also to the whole Panels stories of the need for Innovation.

Next day the Telegraph published –– http://www.telegraph.co.uk/health/saatchi-bill/10865847/Saatchi-Bill-doctors-should-embrace-innovation-not-fear-it.html

At the moment, a doctor who uses standard treatments, according to the proscribed guidelines, cannot be sued – even if the patient dies. A doctor who deviates, who tries something new, risks ending up in court.

But some medical negligence lawyers have argued that a change in the law isn’t necessary because current law does allow doctors to try new treatments already.

This is only true up to a point. In a court case a doctor can bring in medical specialists to defend the innovative treatment he tried. If these specialists say that treatment was reasonable, the doctor is safe. This is known as the Bolam test. But a doctor who wishes to innovate still faces the threat and fear of a legal case. The fact that the doctor may have a defence is all but irrelevant – legal proceedings are terrifying, protracted and life-threateningly stressful. Why risk it?

It is this fear that weighs heavily on the minds of some doctors and it is this that adds a dead weight to the desire to innovate.

The Bill simply brings the Bolam defence forward – to the clinic – and cuts out the fear of the long, stressful court case. It lets a doctor consult with a body of medical experts in advance of the treatment. If the experts all agree that the new treatment is reasonable, the doctor can proceed, legally and safely.

So I do need the Bill as my local hospital could not offer me a phase 5 trial and I didnt meet the criteria for a phase 1 trial. But I did meet the Royal Marsdens Criteria for a phase 1 trial and I cant thank them enough for letting me sign my body over and I have signed to say I wont sue if it goes wrong. It is by body so my choice. (After discussing it with my family we all agreed it was my only chance) So I went on the MK3475 /.28 trial. Ok it wasnt to hard as it has shown great results on Melanoma and is proving itself to be a wonder drug. It could have been a drug that had never been used on a human before just out of the laboratories after being tested on Mice, I would have still gone on a trial. I had nothing to loose my Tumour was growing 2mm per 3 months just getting bigger and bigger

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Ok the results have been brilliant with shrinkage in every area and 4 weeks after that result they can see by eye (not having to measure it )there is more shrinkage.

This will give me more living, no one knows how long for as Im leading the way now. Writing my own  rule book here.

I have been enjoying my garden and been doing some projects with lots of help from my husband today we finished the side garden.

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Tomorrow Im attending the Funeral of our dear Mesowarrior Tess. We have lost so many warriors this week as well. It is breaking my heart so please hurry up and Pass the Saatchi Innovation Bill.

The latest on the Bill http://medicalinnovationbill.co.uk/amendments-to-be-moved-into-grand-commitee/

The latest amendments to the Medical Innovation Bill have been published 9th September 2014.

Lord Saatchi’s team worked closely with the Department of Health who sought expert legal and clinical advice, including consideration of this issue by Sir Bruce Keogh, NHS England Medical Director, in devising these amendments to work for patients, doctors and lawyers.

 →Read: Guidance note on latest amendments

 →Read: The amendments

 →Read: The consolidated Bill

You can see the full amendments on the official parliament Medical Innovation Bill page.

The parliamentary process is about refining policy in the light of discussion and debate. We are proud of the fact that since we started in 2012 we have listened to a range of stakeholder interests and that we have moved the Bill forward each time.

The opportunities presented by the Bill being supported by Government and given careful consideration by the medical director of the NHS and other senior bodies means that we are now satisfied that the Bill is in a form which meets everybody’s concerns in the most appropriate way.

We are firmly intending that data collection should be part of the implementation of the Bill.

Discussions as to whether this needs to be on the face of the Bill and how it should be expressed need to take place and we are listening to all sides of the discussion.

Rays Blog  http://mesoandme.wordpress.com/2014/09/11/thursday-99/

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