A Cure for All Ills. How You Can Help with the Saatchi Bill. #SaatchiBill

Yesterday I told you all about my pending trip to The Houses of Parliament for a discussion about the proposals for the Saatchi Bill. This evening I am here to report back to you. You may need to arm yourself with a cup of tea first.

As I explained in yesterday’s post, the Saatchi Bill is a Bill for change. If passed into law it will help and support the men and women in the medical profession carry out research…proper, investigative research…and find cures for diseases, illnesses and conditions that affect us all.

Today at 11.15am today I was seated in Committee Room 2A within the Houses of Parliament surrounded by other bloggers to listen to the meaning behind this Bill and better understand the proposals it is putting forward.

Firstly Lord Maurice Saatchi addressed us. He explained much of what I told you in my post yesterday which, as I explained to Liz, was my attempt to show the human side of polictics. It was easy to see his passion for this bill as he spoke, as well as the love he has for the memory of his wife. He told us that the reason that we had been invited was because we were all story tellers. That we had a captive audience. That we could own and hold a debate. We were also introduced to Daniel Greenberg who drafted the very complex bill – which you can see here – over 18 months.

Then Professor Andy Hall, a researcher, explained to us how innovation has worked in the past to finding new treatments for cancers and why it is so much more difficult today. Professor Hall was initially a GP. He then decided to specialise in haematology. He explained that at the time the survival rate for Leukaemia was around 20-30%. Now for child leukaemia it’s an incredible 90%. This is down to innovation. In the 1950’s journals, such as the Lancet, criticised Doctors for trying to treat the ‘incurable disease’ but a small number of Doctors found this unacceptable and started to treat patients on a daily basis which then motivated them. This explains a Doctors other fear – one of ridicule from his colleagues. The most recent drug for leukaemia was discovered over 30 years ago but even this was an accident as it was a by-product of chemical weapons. In fact, it transpires that 30 years is relatively young in innovative medical discoveries as many were made over 40 year ago. How can it be that medicine hasn’t progressed but things like computers, mobile phones and cars have? Surely we should be concentrating more on what is important here? Human lives.

We then heard from Debbie Binner. Debbie’s daughter, Chloe, died in February this year of Ewing’s Sarcoma – a rare form of bone cancer. Listening to her story was moving.  It took Doctors 5 months to diagnose Chloe who was aged 15 at the time. They took her to University College, London to the top Doctor in Europe. They were hopeful. She explained that the Teenage Cancer Trust ward was like something out of a nightmare. Where you were lucky if the limb which your cancer affected meant amputation. Debbie spent night upon night on the internet trying to find a cure and that Chloe was denied access to potentially life-saving drugs as she was ‘too young’ to take part in the trials.  Debbie explained how she felt like she was going mad, that was it just her. Finally, at the age of 18, Chloe was allowed onto the trials but by that point it was too late. Debbie explained how she knew a young man who hadn’t been denied the trial and now he is preparing to get married.

Finally, Michael Ellis addressed us. He is the MP who will be taking the non-partisan Saatchi Bill into the Commons as a Ten Minute Rule Bill this Wednesday, 11th September. He likened what he was doing as his ‘parliamentary way of throwing a brick throw the window to try and break the status quo’. He wants to be able to give Doctors the tools they need.

The Bill, which has already been introduced into the House of Lords, is to support Doctors and there opportunity to innovate, to explore, to find cures, to find answers. At the moment any deviation from the standard route which then fails generally results in a guilty charge if this is taken to court. The problem is Innovation = Deviation. At the moment the NHS has over £19 billion stacked against it in pending court decisions on cases they are being sued on. This has doubled in the last 4 years and the funding for these cases is coming from the public purse!

The Saatchi Bill is to ensure that it encourages the Doctors but also safeguards everyone involved.

  • It helps the Doctors who fear negligence and have a family to support
  • It helps the judicial system by better understanding the laws in place – many of whom don’t understand medicine and its practices
  • It helps the tax payer. Less cases where Doctors are sued as everyone knows where they stand and therefore less cases being brought to court
  • It helps patients. One day a discovery as a result of this Bill could help your Mother, Father, Sister or Brother, Daughter or Son.

The system currently in place is anti-innovation. Doctors have rules and regulations to follow and are scared to stray from the well-trodden path. With the Saatchi Bill in place, there will be proper protocols and safeguards. It will mean that the patient’s doctor will be obliged to discuss the patient’s case with specialists and experts know as the ‘Multi-disciplinary team’ or MDT. The doctor will seek consensus from them about the best course of action for the patient – who at this point may have given their full consent for a move outside standard procedure.

The MDT may then decide that standard procedure is not going to be effective and that offering an innovative treatment is a good thing. The option – and it will only be an option – is explained to the patient which would include the risks and, in some cases, it may be that the risks are unknown. The MDT may not have reached a unanimous view and if this is the case the Doctor is obliged to advise the patient.  The patient will always have the option to go through with either standard or innovative procedure.

I am fully behind this bill. There is so much red tape, people who are scared of ‘what ifs’ and ‘maybes’. People who don’t try something new for fear of what might happen. How will innovation ever happen if we do what we’ve always done and get what we’ve always got.

What can you do to help?

  • Contact your local MP. Here: http://www.writetothem.com/. This site is really comprehensive and helps you to understand how to address your MP.
  • Ask them to support the Saatchi Bill. You are welcome to use the URL of this post to present the case to them.

With thanks to Liz Scarff and Dominic Nutt for all their help and organisation.

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11 Comments

  1. September 10, 2013 / 4:44 pm

    It was so lovely to meet you yesterday – thank you for coming along.

    And thank you for such an excellent round up of the day and the issues. The Bill will be read tomorrow in the House of Commons from 11.30am if anybody would like to, you can watch it here: http://www.parliamentlive.tv/Main/Live.aspx

    Thanks again,

    Liz
    @LizScarff
    @SaatchiBill

  2. September 10, 2013 / 1:09 pm

    What a fantastic, informative post. I really hope this can make a difference. So sad to read about Chloe being denied treatment because of her age.

  3. September 10, 2013 / 9:47 am

    Fantastic post!
    I was there yesterday too and found it extremely inspiring, especially if the innovation can be translated to treatments for MS also.
    x

  4. Mammybear84
    September 10, 2013 / 7:42 am

    I had leukaemia when I was 7 and was treated between 1992 and 1994. Rather than radiation, a clinical trial presented us with the opportunity to have three blocks of intensive chemo rather than the standard 2. Who knows if that’s what saved me…who knows if that’s why I wasn’t affected by fertility problems and had my two beautiful girls.

    I’m off to do some reading into this today! Sounds like the right direction to me!
    X

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