Where we are at and where we are going at Parkinson's UK


#1
Hi all,
I just thought I should give you a quick update on some recent activity regarding Impulsive and Compulsive Behaviour and share with you some of the future plans for this area.

We've developed two short films specifically aimed at professionals to highlight the importance of screening and ongoing monitoring for impulsive and compulsive behaviour as well as signposting to the tools we've developed to support them to do this - as of last week, these are now live on the website (www.parkinsons.org.uk/icbresources) and we've been publicising these in professional press and will be continuing to do so via our local networks and conferences. Please feel free to tell your local professionals about it!

Looking towards next year, we'll be continuing our work of raising awareness of impulsive and compulsive behaviour with professionals (including collaborating with professional groups we've traditionally not worked with before). However a particular focus will be on developing support and resources for carers and significant others - in the short time that I've been here, a clear theme is that not only is it often the case that impulsive and compulsive behaviour is first noticed by those around the person with Parkinson's, but also the brunt of the impact is felt by them. we hope that this will address an issue that is important to you.

When I'm in a position to give you more details (and most importantly, ask for your help!), I'll be in touch.

Kind regards,

Suma

#2
Hi all,

There’s obviously been a lot of discussion recently about what can happen from a legal perspective. I’ve been talking to a range of solicitor firms about getting involved in a Q&A session (whereby they would answer questions pre-submitted by yourselves), however so far, I’ve not managed to secure anyone’s agreement to do this. We will do our best to make this happen and I will be continuing my approaches in the new year.

I thought you might also be interested in knowing that we are also looking at how we can provide more direct support to people. The plans are currently being worked on, so I can’t go into too much detail here, but the sorts of things that are being looked at include working with other organisations to raise awareness about services that already exist that could provide help, empowering our local group networks so that they understand how best to support members and ways in which we can help people to access funding to help them in difficult times.

I will be signing off tomorrow and as you know, there is reduced cover over the Christmas period, so I would suggest we pick this up again in January. Until then, I wish you all a happy and healthy Christmas and New Year.

Suma

P.S. I understand that it would be helpful if the link mentioned in the previous message is active - hopefully this is: http://www.parkinsons.org.uk/icbresources

#3
Hi all,

I had wanted to post something when I had something concrete to let you know about, however I can see that an update would be appreciated by you all.
Getting clarification about the legal situation has proved quite difficult and at present, there is no change since my last post in that we do not have agreement from any firms to hold a Q&A session. That being said, an interested party has come forward this week and I will be pursuing this vigorously.
Whilst this might not be completely satisfactory to hear, I hope the activities mentioned above reassure you all that this is still key activity and that ensuring people experiencing impulsive and compulsive behaviour and their loved ones get effective support is integral to this year’s work.

All the best,

Suma

#4
Any progress on the legal advice yet,Sumatra?
Thanks
G

#5
Hi goldengirl,
Suma will be back in on Monday. I'll ask her to post a response then.

Thanks,
Ezinda

#6
Sorry,Suma!going senile and gave you a new name!
GG

#7
Hi all,

As Ezinda mentioned, I've been out and about doing some training with healthcare professionals - apologies for not getting back to you sooner. And no worries, goldengirl - not only have I been called worse, I have tried out Sumatra previously to see if anyone notices :smile:

I recently met with an organisation and whilst they have indicated that they might want to get involved in a Q&A, I do have a few reservations as they have no direct experience in this arena (lots in PPI reclaims and personal injury but not in the medical world) and I do feel I have a duty of care to you all to involve people with the right credentials.

I do now have some leads with a couple of the more established firms and I'm currently following up with them - ideally in the next two weeks prior to my going on leave.

Suma

#8
I wonder if there is an update from Blue-eyes?
It is some time since his last post and I am keen to know if he is making progress in his dealings with the drug companies.
GG

#9
I just wondered if there has been any progress in acquiring a algal opinion about the OCD/DA tragedies.
I am mystified by the length of time it takes to a legal firm to set out the parameters for taking legal action.
GG

#10
GG, for mercy's sakes, it's only been since-hang on -13th March, 13th MARCH. 13TH MARCH.
Cough.

I need a sit down.

#11
Hi all,

I'm glad you asked this now. You’ll be pleased to know that we have finally found a solicitor with good experience in this field who is willing to work with us. What we are proposing to hold is a Q&A session in August/September. Sorry, there is a bit more waiting to do but we are trying to confirm a date that works both for us organisationally and the solicitor.

Suma

#12
Well done Suma!
Too late for many including us as the 3year rule operates.we would have to start action before Sept this year.
No legal firm would help us and now the drug companies can argue that patients took the risk willingly as there has been a warning in the packets since 2007.
But it will be good to see what the legal position is from experts.
GG

#13
Today I received an e-mail from the government yellow card scheme asking for more info about the side effects of Ropinirole I reported 2 years ago.
This is a gov. body set up to collate and act on side effects of drugs .At the time I urged sufferers or their carers to report the horrific OCDs which were posted on the forum.
I discussed the latest summary of reported side effects with an officer today and was amazed to be directed to the summary of reported problems.
Eg.
Personality change 4
Hyper sexuality 37
Suicide 1
Compulsive sexual behaviour 1
Obsessive compulsive disorder 15
Pathological gambling 20
These figures are the TOTALS since 1996!
No wonder the govt is taking no action against the drug companies!

The Mayo Clinic tell us 1 in 4 patients on Ropinirole or Reqyip XL suffer these devastating effects and 1 in 3 of men under 50.
Are doctors not filling in the yellow card?
Are sufferers not telling the people who can stop it?
How can we make this body aware of the reality of this devastating situation?
In despair
GG

#14
http://yellowcard.mhra.gov.uk/
If anyone wants to fill in a report.
Takes a couple of minutes.
X

#15
I logged on to the forum at 4.30 today to see if there was any response to my plea for more people to fill in yellow cards re OCDs suffered as a result of Ropinirole..
I selected latest activity in last 24 hours.
There was no sign of my post entered at 5.27 yesterday.
Cock-up or conspiracy?

#16
Thanks for drawing the yellow card scheme to our attention
As you say - it takes only a few minutes

http://yellowcard.mhra.gov.uk/

EF

#17
I had a few problems filling in the yellow card for this one...

Every second question I had to plead the 5th Amendment:fearful:

#18
I see today that the chief executive of GlaxoSmithKline, Sir Andrew Witty has resigned from his very influential post in the coalition advising the government on business matters.
Does anyone else wonder if there is a connection with this influence and the failure of the legal system to support patients in the UK in pursuing justice against this company for the horrific OCD damage done to Parkinsons sufferers taking Ropinirole /Requip?
Many other countries have had successful legal action against GSK and this drug. Money talks .
GG

#19
GG

You have to be a bit careful about what you say about this fellow. You can't just hint at a misdeed. Tell the Forum members just exactly what you think has happened, what your proof is and what you think should be done about it.

I await your reply

#20
Also everyone...can you explain these articles

1

http://www.ncbi.nlm.nih.gov/pubmed/15390130

2

http://www.ncbi.nlm.nih.gov/pubmed/19173374

3

http://www.ncbi.nlm.nih.gov/pubmed/17013907

This is the results of three different researchers. One in Rome, one in Glasgow and one in London. They see this addictive behaviour in 4% of DA patients,not 20% as is often quoted.

I ask that you all think about the scientific arguments before pressurising PDUK into a course of action that will cost them (and us) money.