I had an interesting email the other day inviting me to attend an event at the Houses of Parliament to find out more about Lord Saatchi’s Medical Innovation Bill.
The event is aimed at ‘leading bloggers and You Tubers’ (their words, not mine, and I now have a very big head), and will explain how social media can be used to put the power of the Bill into the hands of patients.
The Medical Innovation Bill is intriguing, originating from Lord Saatchi’s devastation after his wife, the novelist Josephine Hart, died of ovarian cancer in 2011. The Bill is designed to help doctors innovate and find new ways of treating disease, specifically cancer. Currently, the fear of litigation is holding these doctors back, forcing them to follow well-trodden paths of standard procedure.
The Bill has support from many leading doctors and scientists across the country. It has also been tested on some of the UK’s most senior legal experts, and they have stated that they understand the need for legal clarity in cases where doctors seek to innovate – and that this Bill provides that clarity. This Bill will therefore support sensible innovation, while protecting patients.
Although aimed primarily at people with cancer and the doctors who treat them, could this Bill potentially mean anything for people with MS and their treatment? Although we are not suffering from a life-threatening disease as such, we’ll still be living with it our entire lives. Is there room for innovation in the treatment of MS?
Before the event this Monday, I would really like to find out what you think. How can we open this debate up to include MS? Do you think this Bill will make any difference if it is passed? Hopefully I will have a chance to ask Lord Saatchi a question or two – if you have any ideas please let me know.
For more information, check out these two articles below:
Having a bill is fine. But what if trials or anything that goes with new treatments leads to legal issues? Our blame culture could hamper not the bill, but people’s use of it?
Could open up findings and gov research into LDN
Very true. Or what about Campath? Already licensed for leukaemia, being held up for use in MS.
I think a big part of Saatchi’s bill is about the blame culture stifling innovation, i.e. fear of litigation. A tricky one.
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As I understand it (and forgive me if I am wrong) Lord Saatchi is arguing that if someone has a terminal illness they should be allowed to take bigger risks by trying untested drugs as guinea pigs. I guess his argument is that the person is going to die anyway so it is not so much of a risk to them?
As MS is not terminal different “rules” would apply and the doctors may be at more risk of being sued unless the patient signs away all rights if any side effects worsen their condition. Even then there is a risk the patient could sue on the basis they didn’t fully understand their position.
That’s really interesting. I’m still ploughing my way through all the information. I’ve read articles for and against the Bill.
Where do doctors stand on DMDs? Do patients have to sign a form saying they are aware of side effects? I know I did for Campath.
I’m also not sure just how innovative neurologists can be when it comes to MS?
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There are so many people that are mislead over MS, as in other forms of disease its not the disease that kills its whole host of problems(if that the word) side effects from medication of which their are many, also related conditions that can be devastating, as medic’s say its the MS that has caused the damage to your system.
Some forms of cancer can be cured, but all forms of MS can not, I hope that one day it can be.
On a lighter note the link below is from a video my wife did for Open University June 2007.
http://labspace.open.ac.uk/mod/oucontent/view.php?id=445113§ion=1.1
Do you think innovation will be needed to find a cure for MS?
I just found out yesterday that I might have developed a thyroid problem as a consequence of Campath. I knew the risks though before I signed up for it. To me, on balance, it was worth it. Thyroid problems can be managed much easier than having relapse after relapse.
Great video- I have a funny feeling I saw it a couple of years ago as part of my OU degree.
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Its a case of the devil you know, yes I do think innovation will be needed to find a cure for MS.
This is what annoyed Vicki, trials are done on RRMS and not on other forms of MS, although a trial for SPMS was being considered some time in the future, only god knows when.
Enjoy your coffee, I have had 4 since 6.30, am now due another one, thank you for watching the video, OU sent me the day’s recording on 4 dvds, so I can put in on TV on surround sound and hear it through out the house.
I think a lot of the trials are aimed at trying to slow down progression in the first stages of MS, so of course only people with RRMS can benefit. I spoke to someone recently who has SPMS and the frustration was clear that all the focus seems to be on us with RRMS.
Just waiting for my friend to come and we’ll have a good old Campath catch-up among other things. Nice to see something good coming out of MS, lol.
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MS is dreadful but it brings so many nice people together, even if you don’t feel like being nice some times.
I have looked at the Campath on the MS site, just read about the side effects, sometimes you think do I really want this, but as you say it helps slow things down.
How are you getting on with bringing the Welsh round to a Scots way of thinking and doing, ha ha lol, x
Yup, my main priority was to have the strength to keep raising my son. Back then, every single day was a struggle and I was going rapidly downhill. I really hope NICE will approve it. Of course, it’s not for everyone, but for me it’s been almost a miracle. I really do feel I have my life back.
My friends will tell you that as I’ve lived here since I was 14, I’m more Welsh than Scottish now. Hmm. I’m not so sure! Still have my accent…
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My ancestor’s from Shetland moved to South shields then to Bury Port and Llanelli early 1910.
Have you seen their is a meet the neuroscientist day in London on the 19th sept, got it off twitter. x
I love Shetland! Beautiful place.
My grandfather was from Norway and came over during the war. I still speak some Norwegian, although just remembering English is hard enough sometimes, lol.
I did see that tweet. Very interesting! Would love to go but can’t, sadly.
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Well I have house work to do, so have a good day and thank for reading my ranting, I have written my bit to send to you, I will go over it then send. x
No worries! Look forward to it.
I’m off for a kip, lol.
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