Living With Mesothelioma -My Diary- History was made yesterday with Lord Saatchi presenting his First Google hangout of The Innovation Bill and I was on the Panel


I wont talk about the Video as it explains it all and I was so proud to be invited to sit next door to the great man himself, Lord Saatchi, and I wish him every success as I want the Medical Innovation Bill and when do I want it. I want it today as I might not be here tomorrow.

If you agree please get involved at http://saatchibill.tumbir.com

DSCF9052

We had a long day in London, I had got up at 5am and we were on a train by 7.39. 2 stops on the underground and we were there. Silly me I hadnt bought any info and I thought it was in the House of Lords. Nobody knew there where I should go and trying to be calm while a security man walks around with a gun is not a easy thing to do.

They finally found out for me that I should be at the main gate and it was to be held in the Committee room 2 at the House of Commons. I said I was disappointed as I wanted to see the House of Lords so I was told to come back another time to join a Tour.

Any way got back and went through Security all the x ray machines and being frisked.

We waited for my guests Prof Dean Fennel and My Pal Brian Sullivan from Verastem. It was so good to meet him again and he has had a great time visiting the hospitals that are running or will run his Command Trial.

Dean was so pleased he had been asked to talk and he did so with a very wonderful knowledge of Mesothelioma. You Warriors that live in his area of Leicster are so very lucky to have such a committed doctor.

Professor Fennell

Professor Fennell’s clinical specialisation 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.

http://www2.le.ac.uk/departments/csmm/people/professor-dean-fennell

DSCF9051

We all went inside the room and we were joined by Mary Toms a messowarrior who had lost her dear husband to the disease.I sat in the visitors chairs but was soon moved as Lord Saatchi wanted me by his side as Mesothelioma is just what he is talking about. A cancer that has no cure and is terminal.

Dr Max Pemberton chaired the meeting and I would like to say what a lovely man. He was so kind and so friendly and helped us not to have any nerves about the meeting.

He is a writer as well http://www.maxpemberton.com/

DSCF9049

After it was finished everyone was talking and gleaming info. It was great to see every ones enthusiasm  Mesothelioma and I have been told that Government is going to pass a huge sum of money for research as at last they are saying Mesothelioma isnt rare and that the figures are going sky high that the 2020 scale is wrong. Something I have been saying for a long long time.

DSCF9059

Another interview

We then went out into the gardens for photographs. We were right by the Thames and it was so nice to out in the fresh air.

DSCF9063AA

Wearing our Mustaches for Mesothelioma Day

I was then carried away in cars that had been laid on for Ray and I Dean, Brian.

We were taken to studios that film Interviews and then put them out to whoever wishes to buy them.

They gave us lunch and then we got onto working.

I was in with Dean Fenner twice. I did 3 interviews and I was getting tired as I was telling my story over and over, I kept saying 7 litres as 7 millilitres and even 5 at one time, much to Brians amusement.

The time came to say goodbye I was so pleased Brian Sullivan had a great time as he and Dean Fennal had no prior knowledge of the Innovation Bill being read so I was thrilled I had been able to have arranged it for them.

We were driven to the station and we caught a very crowded train home and got in at 8.30very tired, very happy, and very proud to have taken part in such a history making day.

I would like to thank all the people I have met yesterday. Right from ticket collectors at London Underground and the two men that offered me their seat, we were only going 2 stops so I refused Im so sorry, Security men and all their kindness worry about me going up so many stairs. It seems to me that once you have  a walking stick the whole world is so kind to you. Bless you all.

The Bill as presented in the Dail Telegraph

A bill which would empower patients and doctors to try out new innovative treatments where standard procedures are failing has the potential speed up medical advances, Lord Saatchi will explain as he launches a public consultation on the issue today.

The politician is joined by a panel of experts including Telegraph doctor Max Pemberton in a live video stream from the House of Lords today where they will call on the public to support his Medical Innovation Bill.

Introduced by Lord Saatchi last year following the death of his novelist wife Josephine Hart to ovarian cancer in 2011, the bill seeks to give medics greater freedom to test out cutting edge treatments on dying patients.

Currently doctors are forced by the threat of legal action to stick to standard procedures, even when they are proving ineffective.

Lord Saatchi’s bill has already received huge public support and health secretary Jeremy Hunt promised to support legislation on the issue after the public consultation which is launched today and ends in May.

Calling on Telegraph readers to support his bill last month, Lord Saatchi said: “There may not have been anything to stop Josephine dying, but the terrible thought that haunts me is that her death was a wasted death.

“Indeed, all 165,000 cancer deaths in this country every year are wasted deaths because science advances not one centimetre as a result of them.

“Nothing new is tried and so nothing can be learnt that might spare others. Scientific progress is being halted by the law and fear of negligence bills.

This culture has to change.”

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

Just had an email from a NHS Doctor saying

Excellent!
Hopefully your work will make a difference to all the hoops patients and investigators have to go through all the time.
Bureaucracy is literally life-sapping!
Advertisements

2 thoughts on “Living With Mesothelioma -My Diary- History was made yesterday with Lord Saatchi presenting his First Google hangout of The Innovation Bill and I was on the Panel

  1. Well done everyone especially Mavis. I wish I could help but other my own experience I know very little about it. The problem with meso is that I was totally ignorant of the disease until it hit Peter. If it hadn’t been for the Warriors, I would have been lost. Terrible that so many of us are ignorant of the importance of this work. My son was also treated with something that was of no use and denied the treatment he asked for at stage 4 melanoma. He left a 7 year old son with autism. How disgusted I am with this country. This has destroyed my faith in the N H S.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s