You may have seen this on the front page or elsewhere, but just in case you've not seen it, we've released a statement about the recent news story about a man in France who has been awarded compensation from GlaxoSmithKline following his experiences of impulsive and compulsive behaviour:http://www.parkinsons.org.uk/about_us/news/news_items/all_news/our_statement_on_french_court.aspx
We've been sure to higlight the measures that we know professionals can take to screen for this side-effect and the tools we've developed to help them do so.
Good for Didier Jambart.
old Didier got justice in France
but in England there isn't a chance
it's a crime in this nation
there's no compensation
it's about time that PUK took a stance
Just to update you before the weekend - we're looking for ways to get more information on the judgment and the legal position in the UK. In the meantime, the best people to contact if you want to know more about your legal position is the Law Society - www.lawsociety.org.uk
(there are specific offices in Scotland - www.lawscot.org.uk
and Northern Ireland - www.lawsoc-ni.org
the legal writ is just black ink
but what about the moral stink?
with profit of a billion pounds
how mean their squeeky protest sounds
'its mine, it mine, the gold's all mine'
from misers Gollum Scrooge and Kline
this story has gone on too long
so stand up PUK and shout 'IT'S WRONG'
This case was heard in Feb2011 and the claimant awarded £100,000. This latest news is the result of GSK's appeal. They lost but the award was increased to £160,000.
Leigh Day are adament that one cannot sue if you continued taking the drug after the leaflet warning appeared in 2006.
Didier Jambart stopped in 2005.
My husband was effectively insane by then after 6 years on the drug.
PDUK must get involved in the legal fight for justive, or face being regardrd as putting protection of the drug companies funding of their charity before the well-being of the PD sufferers,
They have got us either way....I took the drug from 2003-2006 at that time there were no warnings either publicly announced or on the medication. I'm told now that it's too late to sue, but I didn't find out that I could until I joined this site which was over 3 years later. It's just not fair and I am now taking this matter up with my local MP and am considering setting up a petition to force the government to re look at this. Its outrageously immoral!!!
the legal route seems closed. legislative change is near on impossible
what is needed is a moral campaign to embarass the drug-dealers into making ex-gratia payments without admitting liability. such a campaign needs leadership and organisation from a group that represents PWP and has media connections and the guts to be on the side of right. PUK seems to have all those qualities. Except one.
If a drug is known to have possible adverse side effects, as in the French case above, your GP or consultant has a moralðical obligation to inform you before prescribing ( you don't see the drug leaflet until you receive the drug). The final decision whether to then take the drug is a combined one. What are the alternatives to not taking the drug?
Well said, Turnip!
I agree wholeheartedly,
We await PDUK's response and an update from Blue-eyes who was appointed, I believe, some time ago to tackle this very problem.
In answer to the last point, we received no warnings, yet the consultant ( who prescribed 36mg for the final 3 years) had recorded "appropriate behavioural warnings given" in his computerised notes, after each visit.
I wonder if his regular "lecture tours" to exotic countries at the drug companies'expense influenced his behaviour?
Our GP, horrified at the revelations about my husband's behaviour said he knew nothing about these side effects and was guided by the consultant.
Money might help to replace all we lost after a lifetime of hard work saving to provide for our old age, but more than that I want recognition that the ruined lives were caused by the drug companies failure to act on their knowledge of these side effects and a new effort to warn adequately and effectively even if this means a loss of profits.
Here's a thought.
Is it right to expect a charitable organization to expend 90% of its income working on a project that effect 10% of its clients. It's all very well the voices demanding that PDUK take up this fight, but has anyone done any costings? Lawyers are not cheap, as we all know.
By defending your case, PDUK may have to reduce the amount of money sent to the researchers of this terrible disease that is ruining my life, I think we should ALL agree to it.
I hate to bring this up, but I want a cure for ME, as well as the best treatment for everyone in the PD UK world.
You want PDUK to do something for YOU. That's okay, but you have to ask, not demand!
I know I will be pilloried for this.
You are right in many ways Spam, one of the reasons i have joined in this debate is that i am NOT seeking any recompense as i had only minor effcts, thank god.
yes, if puk spoke out it would damage the rest of us to some extent, but what is right is right and it is right that those who have suffered to such an extreme degree should be helped. The least that puk should do is come out and say to the pharms - show some compassion, return a tiny insignificant amount of your profits to those who have been damaged as an act of humanity.
My own situation is scarily similar to Didier Jambart. How he had the courage to go to court I can't imagine, but I hope he reads this, he is not alone in his exact circumstances. My life is wrecked. I am so ashamed that I can't even tell my consultant about it. He has no idea. I wonder how many other 'secret' sufferers there are. The statistics must be skewed by the fact that the sufferers are too ashamed and embarrassed to discuss their odd behaviour openly with their neurologist.
The key point for me is that what is written in a leaflet of warnings is completely irrelevant. Once you are on these drugs, your senses of Judgement and Inhibition are removed so you don't perceive the problem, even if warned, until afterwards, when the drugs stop. You are not fully balanced and rational while on them, so unable to mediate whether they are harming you. The drug companies know this. There is no excuse.
I totally agree with you and this is why I mentioned that I think there are many more pwp's with this problem than the professionals think.
I can completely understand how you must feel as when my husband who has had pd for thirty years was on a higher dose (only 8mg) he touched a carer where he shouldn't and all hell let loose, he was so worried poor man he said I will be put on the sex offenders list. I was livid as it was an action that you come across in all walks of caring and it is up to the carer to make the boundaries clear something I had to do when working at a hospital many years ago.
I also agree that your thought processes are affected and this proves correct by reading some of the posts you read on here. My husband has become dis-inhibited, he was such a private person he would be so upset if he really see himself now.
I do urge to to get help from your consultant as they should support you through the changes of your medication.
thinking of you
Cowbell and Neddie, who posted on another thread, you have taken the first step in recognising that there is a problem.
Now be brave and access the wonderful help that is out there.
Phone the consultant or write if you can't face that
PHONE THE PDUK HELPLINE AND SPEAK TO ATRAINED, INFORMED COUNSELLOR
SEE YOUR GP
CONTACT THE PARKINSON'S NURSE.
THEY WILL WORK TOGETHER TO GET YOU OFF THE das AND ONTO ALTERNATIVE MEDS. HOPEFULLY THEY WILL GET YOU AND YOUR PARTNER COUNSELLING/ PSYCHIATRIC HELP.
Sorry. I pressed the lock caps inadvertantly!
My husband and I have been through this and survived
It will be a long , hard journey but you will become (and your husband will become, Neddie) the real you and not the drug-crazed lunatic that is you now.
Take these first steps to prevent your lives being ruined.
You and your families are in my thoughts.