Living With Mesothelioma -My Diary- A lazy Weekend, I guest Blogged for ADAO about the Saatchi Bill .


Sunday and Monday have rolled into one as I have had to write a speech and contact friends and just sort my life out again. Its the weird feeling of going into treatment again. It brings the feeling of making sure the house is clean and tidy so that Ray doesnt have to much to do if I get funny days of feeling unwell.

I hope it doesnt happen as I dont want to spoil Summer again this year. We can have lots of camping days with my friends and even if I dont feel well they will understand.

The Camping and Caravan have said they would squeeze me place anytime so thats good of them.

I did sleep most of yesterday. Im so worn out after last week. The emotional side of it caught up with me. I was relieved that I have more treatment it knocks me out everytime.

Ray has managed to do all the jobs he needed to do so he is happy. Finding him up on the Motorhome roof isnt my idea of keeping him safe.

IMG_0202

I had a long long Skype with dear friends this morning. I dont use Skype very often and yet it ia a free way to keep in touch. I got a guided tour around the house, walking around with the laptop it made me feel woozy Ha ha !! But I can see clearly again and know what Im doing and where Im going.

Plans I love working to plans even though you have to change them it creates interest.

I Did a guest blog for ADAO and Linda Reinstein has had a busy Conference since then.

http://www.asbestosdiseaseawareness.org/archives/26634

Posted on May 1, 2014

ADAO Welcomes Guest Blogger Mavis Nye

The Asbestos Disease Awareness Organization (ADAO) is very fortunate that our community is so active and outspoken. It is our pleasure to feature unedited blogs from some of our members. Today we feature Mavis Nye’s thoughts about the Saatchi bill.  Mavis is the 2013 recipient of ADAO’s Alan Reinstein Award for her commitment to education, advocacy and support to countless patients and families around the world. She has also Shared Her Story on our website. Thank you, Mavis, for speaking out!

Mavis parliamentMavis Nye: 2014 has been a great year so far for Mesothelioma awareness Im so pleased to have played a roll in this I was invited to attend the introduction of the Saatchi Bill by Lord Saatchi at the House of Commons.

What was even better, as I was allowed to bring visitors to attend with me. I happened to be meeting Brain Sullivan Director of Verastem at the Waldorf Hotel for tea on the Monday. He wanted to meet as they had been talking about me in Boston and my survival of Mesothelioma.

Verastem are the company that are running the Command Trial in the UK.

Brian was thrilled to attend the meeting and he asked Doctor Dean Fennell who is at Leicester where the Command Trial is being trailed as well as other hospitals now.

Professor Fennell’s clinical specialization is in thoracic medical oncology and early clinical trials, particularly Mesothelioma, with a particular interest in therapeutic targeting of the core apoptosis pathways. Prof Fennell leads a Cancer Research UK funded group with a laboratory focusing on apoptosis, drug resistance, and signature-based therapeutics using the connectivity map for accelerated, targeted drug discovery. He is currently leading UK and international clinical trials of novel targeted therapies in Lung Cancer and Mesothelioma. He was invited to speak at the Launch then so I was even happier that I had invited him as the Command Trial was launched on the same day.

When I arrived at the House of Commons I sat with visitors but I was ushered by Doctor Pemberton to sit next to Lord Saatchi I was so proud as I sat there on the Panel. Mesothelioma is just the sort of disease that suits the bill. We are terminal and have no cure, Palliative care is all we can expect.

Doctor Pemberton Chaired the meeting Lord Saatchi opened the proceedings

About the Bill

The Medical Innovation Bill (Saatchi Bill) will help medical doctors to innovate new treatments and cures safely and responsibly for cancer and other diseases.

The Bill will codify the existing law allowing medical doctors, clinicians & surgeons who follow the required transparent and accountable procedure, to safely provide innovative treatments, with consent, for patients. Lord Saatchi has campaigned to change the law so that, with consent, doctors can treat patients dying of cancer and other diseases with new and innovative treatments, instead of having to stick to failed standard procedures, as the law currently requires.

Currently the law dictates that patients are only offered standard treatments. Innovation the bill, introduced by Lord Saatchi and referred to as the Saatchi Bill, is intended to “help doctors innovate new treatments and cures for cancer and other diseases” without fear of retribution, Doctors will be able to “deviate away from standard procedures and innovate, safely and with the protection of the law” in order to offer patients effective treatments. For Mesothelioma patients, and any other patient that is terminal,who have exhausted their treatment options, this bill could mean the difference between life and death.

“I back the innovation bill. And I said “when do I want it? I want it today, because I might not be here tomorrow,” as I talked about the importance of the bill to me. I had followed the Bill ever since Lord Saatchi raised it when he lost his dear wife Josephine Hart, to ovarian cancer, The Government is asking patients what they think, you can watch the whole of the meeting on here http://www.telegraph.co.uk/health/saatchi-bill/10657747/Lord-Saatchi-launches-the-consultation-on-his-medical-innovation-bill-live.html

When it was over Ray, Dean Fennel and Brian Sullivan with me, tagging along, were taken to the Gardens by the Thames and I was interviewed for the News Program that night.

We were then ushered into cars and taken to an agency where we carried out many different radio interviews . We had the best salad roll I have ever tasted. I mention food as by then I was very hungry. We had set of for London so early.

H tonic Health Company reported that between all three of us (Doctor Dean Fennell, Brian Sullivan and myself) 191 Individual news articles were raised reaching 30.5 million people. 5 Interviews on Prime UK Regional News channels. ITV and BBC,

168 Radio Interviews including Sky news Radio BBC the Counties and Imagine FM. 4 Items of online Advertorial in UK Nations Newspapers The Independent.

How amazing is the power of the Internet and media.

We are also very lucky to have The Early Access to Medicines Scheme (EAMS) aims to give patients with life threatening or seriously debilitating conditions access to medicines that do not yet have a marketing authorisation when there is a clear unmet medical need. This UK government scheme came into effect on 7 April. The scheme will be funded by pharmaceutical companies which develop innovative treatments, meaning patients will benefit from world-class breakthroughs at no cost to the NHS. Once drug manufacturers have received a scientific opinion from the Medicines and Healthcare products Regulatory Agency, doctors will work with patients to prescribe the drugs when appropriate. In return Drug companies will be able to gain the experience of having their drugs being used within the NHS and will work closer to the regulators.. They will gain guidance and advice so much earlier in the process. As a result, the process of patient access will be speeded up and new drugs could be made available to patients months or sometimes years before the treatment is licensed.

Writing in the Telegraph earlier this month Max Pemberton said: “If a treatment or procedure has been suggested to be of benefit, why not try it, especially as it might offer new hope to patients?

“The argument for this is particularly strong in the case of cancer treatment.”

http://www.telegraph.co.uk/health/saatchi-bill/10657747/Lord-Saatchi-launches-the-consultation-on-his-medical-innovation-bill-live.html

The next step will be meetings with The Secretary of State for Health (Jeremy Hunt) and legal Departments and talks with the Doctors,Surgeons and Pharmaceutical Companies so that every one is happy with the Legal side. These are being aranged as the support is there now for the Bill. They needed 10,000 signature,’s and to date they have over 12,000 and the backing of all the Departments

Secretary of State for Health, Jeremy Hunt says:

“The government should do whatever is needed to remove barriers that prevent innovation which can save and improve lives. We must create a climate where clinical pioneers have the freedom to make breakthroughs in treatment.

“The Medical Innovation (No 2) Bill, sponsored by my honourable friend the Member for Northampton North (Michael Ellis), and the comparable Bill introduced by my noble friend Lord Saatchi in the other place, correctly identify the threat of litigation as one such barrier.

“Their hope is that legislation to clarify when medical innovation is responsible will reduce the risks of clinical negligence claims.

“Their argument is that with this threat diminished, doctors will be confident to innovate appropriately and responsibly. This innovation could lead to major breakthroughs, such as a cure for cancer.

As I have said 2014 has so far been an exciting year I just cant guess what’s round the corner but Im so pleased to be a 5 year survivor with Mesothelioma and played a part in history.”

MyWeb Page http://onestopmesothelioma.co.uk/

http://www.justgiving.com/mavis-nye?utm_source=facebook&utm_medium=socsponmobile&utm_content=mavis-

Our books are here http://www.rayandmave.org/html/more_of_our_books.html

 Rays Blog http://mesoandme.wordpress.com/

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