Eck,

if you do a quick search for the phrase "legal aid" under user "Eck" you'll find a brief chat you had last September with user "pop1" about the legal case she'd just lost, and a link to her press coverage in the Mail.

I believe she is now liaising with Michael Meacher MP on the whole DA/compensation issue, and is looking for as many case studies as possible to show him. I've seen correspondence beween her and his office, so know this to be genuine.

I suggest you have a dig around, unless you're already aware of this. Meacher is a good solid campaigner, and used to be Tony Benn's sidekick when the latter was an MP. (Remember Benn himself trying to get the banks nationalised in the 70s? If only......).

Meacher was also involved back in 1999 when DAs were first being proposed to the world as the new magic drug for resolving PD and RLS symptoms.

This is all very positive.
But the PDUK does have an ongoing campaign to highlight the issue and take action to get recognition and compensation for the victims.
Could Blue-eyes be involved in liaising with Michael Meacher and setting up a meeting with a law firm to investigate recruiting through this forum and national press for a class action and parliamentary debate?
We shouldn't have to do all this ourselves when we have an organisation supposedly fighting our cause.I welcome response from PDUK.
GG
X

I suggest Bluey contacts "pop1" to find out progress, if any.
A good project for an Ambassador perhaps?

Hello all,

Thanks for your comments.

We've put your question to the impulsive and compulsive behaviour steering group and we'll post something as soon as we've had a response from them.

Thanks,
Ezinda

Ezinda, the Steering group meeting is on 27th June, so it will be just after that i will post a response.

Great.

Thanks blueeyes47.

Hello,

As Blueeyes 47 said, we will get back to you soon with an update on the legal issues.

I wanted to give a quick update on some of the other areas of the campaign.

We updated the website with information from research we carried out with consultants. This research found that while 82% of consultants know about impulsive and compulsive behaviour, only 48% pre-screen people before starting them on Parkinson's medication.

This is giving the campaign its key message: Consultants need to ask people about their personal and family history before starting them on Parkinson's medication.

They also need to tell people with Parkinson's about the possible side effects and make sure they monitor people who are on this medication.

You can find out what we are doing to address this on our news update http://www.parkinsons.org.uk/about_us/news/news_items/all_news/icb_update.aspx

We are also carrying out a survey of people affected by Parkinson's to find out how big the impact of the campaign is going to be for people with Parkinson's.

We are asking people whether their healthcare professional spoke to them about impulsive and compulsive behaviour and we will repeat the survey in a year to measure the difference.

It would be great if you could take part. You can find the survey at: http://www.surveymonkey.com/s/icbsurvey2012

Sarah
Impulsive and compulsive behaviour campaigns officer

Thanks for the uodate ICB.
I am horrified thar 18% of consultants know nothing of these life destroying side effects!
One of the arguments the drug company used to deny our claim was that all consultants are made aware of the DA/OCD side effects and treat patients carefully to prevent them. Clearly much work for the campaign team to cover.
GG

.
Hi Sarah.

The very first paragraph in your document

http://www.surveymonkey.com/s/icbsurvey2012 states that:

(1)

"Impulsive and compulsive behaviour is a possible side effect of some Parkinson's drugs".

It is NOT a possible side effect, it is a definite and proven side effect, having been ruled as such many, many times over in courts of law around the world, including the one I was involved in myself.

Even the drug companies themselves acknowledge this (or they wouldn't now be putting their warnings in the boxes, would they?) - they merely argue about the percentage of patients which may be affected, consultants' responsibilities and what constitutes sufficient evidence against a drug company for a court to rule in the plaintiffs' favour.

and that:

(2)

"Although only a relatively small number of people experience this behaviour......" which is patently UNTRUE. Official figures released in February 2011 showed the rate to actually be 1 in 4. Even more frequent for young onset (1 in 3) and high-dose (1 in 2) cases. Hardly a small number!

If we're going to start this exercise using the figures provided by the drugs industry rather than those produced by bona fide[/i] independent researchers we may as well give up now!

Ray.

.

To quote Ray

1)


"Impulsive and compulsive behaviour is a possible side effect of some Parkinson's drugs".

It is NOT a possible side effect, it is a definite and proven side effect, having been ruled as such many, many times over in courts of law around the world, including the one I was involved in myself. "


Semantics Ray?

Are you saying that the getting the side effect is definitely going to happen. If so, you are plainly mistaken. I am living proof of that.If you are saying that there is a possibilty of getting a side effect that is a definite problem, then I agree with you although I have concerns at the numbers. But the article write up still seems correct to me

2)

Official statistics?

I know we've had this chat before, but you cannot just cherry pick the stats that prove your case, ignoring the others which can plainly be found. That is not good science.

I whole-heartedly back the wording used by Sarah!