Spam, I must say that your post appears to be very hostile toward the people who have suffered from their DA experiences, we all want a cure and we are all suffering, just as much as you from this condition. I have had it now for 11 years, however, it is very clear that the DA subject doesn't effect you so you can remain selfishly against any charitable money being used to assist people to seek some recognition from the pharmaceutics that their product has ruined lives.
In answer to one of you ye no questions,when I and some others on this forum actually took DA's we were NEVER advised by our neuro's or by the pharmaceutical company that there were any concerns in respect of OCD. It hadn't been made public then, so for us we can prove negligence on the part of the company...They have also libeled themselves in a way because they have paid out of Court settlements to 4 people in UK already. If thats not some form of admission to negligence I don't know what is.
I pray that I never become so selfish as to not want to support my fellow pd sufferers to gain something from the funds of PUK simply because I am not affected by their particular symptom. God help us all if we were all like this!
glenchass
Spam i do not think you hostile or selfish, rather i see you as frustrated and with a differing but equally valid view.
As to the expectations of PUK by some poster i look at PUKs carefully worded statements and i am sure that PUK is going to take a supportive not a litigious role regarding DA's
From my reading of PUK posts i believe they will organise a question and answer session if they can and will work through setting up a support system for affected people
BUT
they wont get involved in legal debate with drug companies, that includes any preliminary work which is aimed at preparing for a court case.
I am not saying this is right or wrong only that it just isnt going to happen.
As to the expectations of PUK by some poster i look at PUKs carefully worded statements and i am sure that PUK is going to take a supportive not a litigious role regarding DA's
From my reading of PUK posts i believe they will organise a question and answer session if they can and will work through setting up a support system for affected people
BUT
they wont get involved in legal debate with drug companies, that includes any preliminary work which is aimed at preparing for a court case.
I am not saying this is right or wrong only that it just isnt going to happen.
@Glenchass
Once again you have chosen assume I do not care about you and your problems. But I might be doing you a big favour, reminding you of the 'real' world out there.
I don't deny your right to sue the Pharmaceutical companies or your neurologist.
I have never been selfish. I have nothing to gain and I am aware that I am antagonising people with these comments. I just cannot stand ill-thought out ideas.
In fact, it is only by learning from my arguments that you will have any chance of winning a class action against the pharmaceuticals. The previous poster understands this as well. But I am not a lawyer, or able to help in any way at all here.
You will be up against the best legal minds in the business. Any mistake or looseness of thought will result in big problems.
Go away, convene a class action forum, appoint a lawyer and try to take them to court. You may find then that P UK will be able to support you when the picture is more positive. But do this quietly and in the background or else you will expose all to your enemies.
I really wish you well in the battle.
But the first step is to organise yourselves. Where is your library of data, your medical papers, your legal precedences? Who is going to sue who? Under whose legal system? The list is endless and you haven't really even started.
Good luck
Once again you have chosen assume I do not care about you and your problems. But I might be doing you a big favour, reminding you of the 'real' world out there.
I don't deny your right to sue the Pharmaceutical companies or your neurologist.
I have never been selfish. I have nothing to gain and I am aware that I am antagonising people with these comments. I just cannot stand ill-thought out ideas.
In fact, it is only by learning from my arguments that you will have any chance of winning a class action against the pharmaceuticals. The previous poster understands this as well. But I am not a lawyer, or able to help in any way at all here.
You will be up against the best legal minds in the business. Any mistake or looseness of thought will result in big problems.
Go away, convene a class action forum, appoint a lawyer and try to take them to court. You may find then that P UK will be able to support you when the picture is more positive. But do this quietly and in the background or else you will expose all to your enemies.
I really wish you well in the battle.
But the first step is to organise yourselves. Where is your library of data, your medical papers, your legal precedences? Who is going to sue who? Under whose legal system? The list is endless and you haven't really even started.
Good luck
Spam
Do you think that Parkinsons UK would be providing training films for doctors and nurses on how to deal with the fact that there can be OCD side effects from D.A.'s for 17% of patients, if it was not now the widely accepted incidence of this problem by eminent authorities such as the Mayo Clinic, to quote just one off the top of my head. Even when the warnings were given they were quoting figures of 1 in a 100 or less up to and beyond the time of my dx 3 and half years ago. Now, on the contrary, the pendulum has swung the other way and even the Sinemet also has a warning of s rare chance of developing,e.g.gambling problem with levodopa.
So the balance of probabilities in any one patient who develops these recognised side affects would be the deciding factor as you can't prove anything one way or the other about what might or might not have happened in some hypothetical future.
As for the possibility of someone hiding their pre-existing compulsions, the fact that the occasional claimant is inevitably not in good faith hardly justifies no one else's case being dealt with.
Parkinsons UK is there to help and advise PWP in any way they can - that's why they have Welfare Assistants as well as medical advisers. Of course people are disorganised at the outset of their quest for reparation - that's why they need help in finding out how to marshal the facts and how best to organise. The problem of legal fees if the case were pursued is a separate isue which I certainly don't have the answer to given the sort of sums we would nbe talking about.
Do you think that Parkinsons UK would be providing training films for doctors and nurses on how to deal with the fact that there can be OCD side effects from D.A.'s for 17% of patients, if it was not now the widely accepted incidence of this problem by eminent authorities such as the Mayo Clinic, to quote just one off the top of my head. Even when the warnings were given they were quoting figures of 1 in a 100 or less up to and beyond the time of my dx 3 and half years ago. Now, on the contrary, the pendulum has swung the other way and even the Sinemet also has a warning of s rare chance of developing,e.g.gambling problem with levodopa.
So the balance of probabilities in any one patient who develops these recognised side affects would be the deciding factor as you can't prove anything one way or the other about what might or might not have happened in some hypothetical future.
As for the possibility of someone hiding their pre-existing compulsions, the fact that the occasional claimant is inevitably not in good faith hardly justifies no one else's case being dealt with.
Parkinsons UK is there to help and advise PWP in any way they can - that's why they have Welfare Assistants as well as medical advisers. Of course people are disorganised at the outset of their quest for reparation - that's why they need help in finding out how to marshal the facts and how best to organise. The problem of legal fees if the case were pursued is a separate isue which I certainly don't have the answer to given the sort of sums we would nbe talking about.
@ Eileenpatricia
Please don't feel I do not understand your issues and problems with this horrendous side effect of DAs. I empathise with you all, but I want to make you understand the enormity of the problem before you go down any route.
Here's yet another question that needs to be answered.
If, say, P UK does help you in a class action and you win the case. The Pharmaceutical companies pays ...say £0.5M to each of the ..say 10 members of the action, as well as paying the legal fees of the group. All good you think. But that money still doesn't come from nowhere. They will reduce the money spent on this class of drugs, ie = less research. P UK will get their money back, that's all.
And if you lose! (it is possible). The company will then sue for their legal costs. This is normal I think in these types of cases. If P UK are the 'owners' of the suit, then they stand to lose ?£millions. They might even cease to exist. Either way, the risk to P UK is high.
So, besides the obvious moral issue in helping this group of people, I feel I would not want any organisation risking their existence. P UK is a major charity and has obligations under law to look after itself as well as its 'customers'
I'm sorry if you are angry about what I have to say. I am certainly not selfish, but I am cautious. If you are having trouble convincing me, then you will have more trouble convincing a court.
But I am no lawyer, so I might be talking rubbish! I know this.
Once again, best wishes with the future.
Please don't feel I do not understand your issues and problems with this horrendous side effect of DAs. I empathise with you all, but I want to make you understand the enormity of the problem before you go down any route.
Here's yet another question that needs to be answered.
If, say, P UK does help you in a class action and you win the case. The Pharmaceutical companies pays ...say £0.5M to each of the ..say 10 members of the action, as well as paying the legal fees of the group. All good you think. But that money still doesn't come from nowhere. They will reduce the money spent on this class of drugs, ie = less research. P UK will get their money back, that's all.
And if you lose! (it is possible). The company will then sue for their legal costs. This is normal I think in these types of cases. If P UK are the 'owners' of the suit, then they stand to lose ?£millions. They might even cease to exist. Either way, the risk to P UK is high.
So, besides the obvious moral issue in helping this group of people, I feel I would not want any organisation risking their existence. P UK is a major charity and has obligations under law to look after itself as well as its 'customers'
I'm sorry if you are angry about what I have to say. I am certainly not selfish, but I am cautious. If you are having trouble convincing me, then you will have more trouble convincing a court.
But I am no lawyer, so I might be talking rubbish! I know this.
Once again, best wishes with the future.
I do not have the energy to keep repeating this Spam. We are not asking PDUK to fund a class action, but to obtain and offer us legal advice on how to launch one.
You offer us a long list of what we must do for ourselves in data collection etc.
Can I just remind you that we either have Parkinson's, some for many years, or are caring for someone who has. Many of us are old, disabled with ruined lives, relationships and finances. If we could do all this without help we would.
Welcome to our real world.
You offer us a long list of what we must do for ourselves in data collection etc.
Can I just remind you that we either have Parkinson's, some for many years, or are caring for someone who has. Many of us are old, disabled with ruined lives, relationships and finances. If we could do all this without help we would.
Welcome to our real world.
I am not personally involved except to be grateful that this problem was highlighted by patients who were unlucky enpough to suffer the results (not medics) before I was offered d.a.'s
three years ago at a time when my pd nurse had "never encountered thses problems"!! As I said previously my only interest is that I have a family history of compulsions and addictions which will be properly taken into account now that the problem is recognised if it turns out that I need to consider d.a.s as part of my treatment in the future. To clarify what I've said I must add that you do not have to have previous addictive traits to have a sudden onset of serious addictions.
three years ago at a time when my pd nurse had "never encountered thses problems"!! As I said previously my only interest is that I have a family history of compulsions and addictions which will be properly taken into account now that the problem is recognised if it turns out that I need to consider d.a.s as part of my treatment in the future. To clarify what I've said I must add that you do not have to have previous addictive traits to have a sudden onset of serious addictions.
Hi,
I am afraid I must indulge myself again.Add a touch of what I would like to think of as"reality" to a thread which should really be titled"The compo push drive".
Although seeming to try and dismantle Spam 95's 1,2,3 step theory on the 1,2,3 guidelines to prevent ICB thread.It was just my view and an attempt to bring reality,just as Spam 95 is doing here on this thread.
Why people take offence at Spam 95's realistic approach is beyond me.At least Leyther had the decency to stick up for you after one particular verbal attack by someone else.It just goes to show you,there is still hope.I am mainly on your side Spam 95 on this and the other thread.At least you live in the real world,take statistics for what they are,estimates.Basically studies and reliable information mixed with unreliable information which can change on a daily basis depending on just who is correlating the results,for what purpose and from what source.Just like the pharmaceutical industry under attack here on this thread.Show me a corporation,company,organisation which is not open to corruption.It happens,is a fact of life.
What is amazing is the scorn directed at PD UK.They are trying to help,they have no magic wand.Just as the Neuro's and pharmaceutical industry don,t.They are doing the best they can with what resources they have to meet a most often(impatient)demand.
Take a group of people desperate foe alleviation of symptoms caused by a degenerative illness,which gradually whittles away they're quality of life.Then take the pharmaceutical industry competing with each other to develop drugs to supply this need.Although completing tests and trials,there is a limit to the time span over which these tests are conducted.They cannot be tested forever,plus some things/potential problems only come to light over an unrealistic extensive time period.or a much higher dosage than the average or recommendation.
The arguments could go on forever debating this area.Basically,short cuts,under handed tactics and undisclosed data may allow a drug onto the market,when maybe in hindsight,or in fact realistically it really shouldn't be.It is however actually Lawful,in a under handed unlawful seeming kind of way.The system for development,trials and production for release of many drugs,I admit,is unbelievably flawed.It is also most certainly driven by financial gain.Trouble is,you probably have no idea how many involved in the process have they're fingers in this extremely lucrative sticky pie.Any potential compensation action by any on here is open to so many flaws,hurdles and inconsistencies.
In the pharmaceutical industry there is a small window of opportunity to achieve maximum profit,also meeting the demand.Once winning the race to produce the drug before it is offered up,after 5 years exclusive profit,it is then offered up to the competitors producing the generic alternatives.
However,the pharmaceutical industry are supplying a need,hopefully and generally for the good and alleviation of individuals who are suffering.In some cases this need may have certain risks attached.If a last hope drug for cancer appears on the market.Do you think that people grasping at that last chance of life or a cure,or prolonged life,are going to want to wait because they are uncertain what the short term or even the long term side effects will be?They will will probably be the first realistic"True trial"of that particular drug.To cover every single long term potential side effect at implementation is impossible under certain time limits.Indeed,these side effects are built up and noted on Data bases,when significant they are added to the leaflet information.As mentioned on the other ICB thread Spam 95 started,we are all Guinea pigs.As we are all Guinea pigs in lifes' great journey and all so diversely different in our reactions and responses to any medication.
The whole picture/landscape/outlook,has to be viewed and dealt with within certain guidelines.Guidelines which are actually lawful in a seedy sort of way.The risks have to be weighed up however against the need/demand,and is always the case in EVERY walk of life,is dictated ultimately by greed(financial gain).Although those responsible in all areas of drug manufacture and approval will argue the case that there is a lot more good gained which far outweigh unforeseen complications which will always be highlighted by a public often"Hell bent" on compensation and revenge when dual risk goes wrong.Yes,taking any medication has an element of risk,trial and error attached.So lets get real here.
Take the Specialists,doctors,Neurologists(in our case).They base the prescribing of alternative drugs to certain patients,after assessing the need,the effectiveness and any information available to them at " THAT TIME".The real test of that drug is in fact ongoing with US the patients taking it over a prolonged and often ever increasing dosage to manage the worsening symptoms.There are so many scenarios,as we all differ so much in our body chemistry.
In the same way as Neurologists,Doctors and Specialists prescribe,based on the information available from the leaflets in medication,research results,drug information"Bibles"(to coin a phrase),internet etc.They also have to take as truth/word the information supplied to them by the patient.If a patient decides to lie,cover up the truth/facts,maybe to avoid embarrassment for instance,for whatever reason.Then the Neurologist/specialist may prescribe a drug they may not have otherwise done had they known the true facts/circumstance.
People are not machines,everything is not Black and White.There is always a hazy Grey area.This"No mans land",this battle zone,is the arena of unpredictability.All those on their anger,injustice based compensation push have forgotten this.
The pharmaceutical responsibility has been met.If anybody is to blame,it is the respective Governments for not exercising stricter control/regulation over the pharmaceutical industry as a whole,its varying off shoot organisations attached and the more stringent/tighter control over the development of each individual drug.
However,for patients to prove negligence,from accused parties concerned,in this case,the Dopamine Agonist drugs and the effect on compulsive behaviour.Is to shift the whole blame onto the pharmaceutical industry or Neurologist,and this is not entirely true.The patients themselves HAVE TO to take part responsibility(in my view,the majority of responsibility)for they're own actions.
My opinion is,that anybody taking any drug,has to manage and report any changes in the change of the illness,side effects etc themselves.Those prescribing,developing and treating are not mind readers.Each patient/person is responsible for themselves and as such cannot lay the whole blame on other parties,when they themselves are in effect the integral part of what is in fact an ongoing trial of a drug after initial trials.This in reality is forever ongoing,there is in fact NO END.For example.What is the effect of this drug on a persons body when passed on/down genetically,Children,Grand children.This is impossible to predict.Will you then sue in 20 years time.It is unforeseen.A simplified example and well known case is"Thalidomide".Of course,those children deserve some recompense,but who was to know or predict that.The children did not injest the drug themselves,but yet pay the biggest price.
So all those people engaging in the DA thrust for compensation and continually arguing on here,even amongst themselves.You really need to take a little responsibility for your own actions.You won't though,because that would effectively put a big dark line through your case.Yet is in fact the truth.The bodies you are seeking compensation from know this,as do the solicitors,tearing hair out trying to make you see the complexity of the whole situation
My opinion is,that you need to stop jumping on the "blame culture" band wagon.Especially when slating organisations that are actually trying to alleviate your suffering.Get real,take account for your own actions and behaviour,individual part in the whole downfall of maybe finances,home or life.It happens every day to people not on DA's.Search your own hearts and you may find deep inside a number of key moments which YOU,yes YOU yourself were ultimately to blame for most of your own woes.However,it is so easy to hide behind a smokescreen of blame to satiate perhaps the ongoing guilt you are feeling for messing up,taking your eye off the ball,hiding from embarrassment and shame.
It is so easy to apportion total blame on the pharmaceutical industry and Health professional scapegoats.Not to admit your own flaws and inadaquacies.To feign ignorance,yet be so knowledgeable in your own accusations.Not seeing your own faults and personal blame in the whole equation,is the easiest thing to do.When losing sight of the bigger picture,most people can see.Turns bitterness and desperation to" pass the Buck" so easily on to the people who were trying to help you,and continue to supply the much needed drugs you desperately need to function.Praying the very people you criticise may One day find the much needed cure you long for.
A realistic outlook and opinion
Yes I have been there,so understand all sides
Take care
Titan
I am afraid I must indulge myself again.Add a touch of what I would like to think of as"reality" to a thread which should really be titled"The compo push drive".
Although seeming to try and dismantle Spam 95's 1,2,3 step theory on the 1,2,3 guidelines to prevent ICB thread.It was just my view and an attempt to bring reality,just as Spam 95 is doing here on this thread.
Why people take offence at Spam 95's realistic approach is beyond me.At least Leyther had the decency to stick up for you after one particular verbal attack by someone else.It just goes to show you,there is still hope.I am mainly on your side Spam 95 on this and the other thread.At least you live in the real world,take statistics for what they are,estimates.Basically studies and reliable information mixed with unreliable information which can change on a daily basis depending on just who is correlating the results,for what purpose and from what source.Just like the pharmaceutical industry under attack here on this thread.Show me a corporation,company,organisation which is not open to corruption.It happens,is a fact of life.
What is amazing is the scorn directed at PD UK.They are trying to help,they have no magic wand.Just as the Neuro's and pharmaceutical industry don,t.They are doing the best they can with what resources they have to meet a most often(impatient)demand.
Take a group of people desperate foe alleviation of symptoms caused by a degenerative illness,which gradually whittles away they're quality of life.Then take the pharmaceutical industry competing with each other to develop drugs to supply this need.Although completing tests and trials,there is a limit to the time span over which these tests are conducted.They cannot be tested forever,plus some things/potential problems only come to light over an unrealistic extensive time period.or a much higher dosage than the average or recommendation.
The arguments could go on forever debating this area.Basically,short cuts,under handed tactics and undisclosed data may allow a drug onto the market,when maybe in hindsight,or in fact realistically it really shouldn't be.It is however actually Lawful,in a under handed unlawful seeming kind of way.The system for development,trials and production for release of many drugs,I admit,is unbelievably flawed.It is also most certainly driven by financial gain.Trouble is,you probably have no idea how many involved in the process have they're fingers in this extremely lucrative sticky pie.Any potential compensation action by any on here is open to so many flaws,hurdles and inconsistencies.
In the pharmaceutical industry there is a small window of opportunity to achieve maximum profit,also meeting the demand.Once winning the race to produce the drug before it is offered up,after 5 years exclusive profit,it is then offered up to the competitors producing the generic alternatives.
However,the pharmaceutical industry are supplying a need,hopefully and generally for the good and alleviation of individuals who are suffering.In some cases this need may have certain risks attached.If a last hope drug for cancer appears on the market.Do you think that people grasping at that last chance of life or a cure,or prolonged life,are going to want to wait because they are uncertain what the short term or even the long term side effects will be?They will will probably be the first realistic"True trial"of that particular drug.To cover every single long term potential side effect at implementation is impossible under certain time limits.Indeed,these side effects are built up and noted on Data bases,when significant they are added to the leaflet information.As mentioned on the other ICB thread Spam 95 started,we are all Guinea pigs.As we are all Guinea pigs in lifes' great journey and all so diversely different in our reactions and responses to any medication.
The whole picture/landscape/outlook,has to be viewed and dealt with within certain guidelines.Guidelines which are actually lawful in a seedy sort of way.The risks have to be weighed up however against the need/demand,and is always the case in EVERY walk of life,is dictated ultimately by greed(financial gain).Although those responsible in all areas of drug manufacture and approval will argue the case that there is a lot more good gained which far outweigh unforeseen complications which will always be highlighted by a public often"Hell bent" on compensation and revenge when dual risk goes wrong.Yes,taking any medication has an element of risk,trial and error attached.So lets get real here.
Take the Specialists,doctors,Neurologists(in our case).They base the prescribing of alternative drugs to certain patients,after assessing the need,the effectiveness and any information available to them at " THAT TIME".The real test of that drug is in fact ongoing with US the patients taking it over a prolonged and often ever increasing dosage to manage the worsening symptoms.There are so many scenarios,as we all differ so much in our body chemistry.
In the same way as Neurologists,Doctors and Specialists prescribe,based on the information available from the leaflets in medication,research results,drug information"Bibles"(to coin a phrase),internet etc.They also have to take as truth/word the information supplied to them by the patient.If a patient decides to lie,cover up the truth/facts,maybe to avoid embarrassment for instance,for whatever reason.Then the Neurologist/specialist may prescribe a drug they may not have otherwise done had they known the true facts/circumstance.
People are not machines,everything is not Black and White.There is always a hazy Grey area.This"No mans land",this battle zone,is the arena of unpredictability.All those on their anger,injustice based compensation push have forgotten this.
The pharmaceutical responsibility has been met.If anybody is to blame,it is the respective Governments for not exercising stricter control/regulation over the pharmaceutical industry as a whole,its varying off shoot organisations attached and the more stringent/tighter control over the development of each individual drug.
However,for patients to prove negligence,from accused parties concerned,in this case,the Dopamine Agonist drugs and the effect on compulsive behaviour.Is to shift the whole blame onto the pharmaceutical industry or Neurologist,and this is not entirely true.The patients themselves HAVE TO to take part responsibility(in my view,the majority of responsibility)for they're own actions.
My opinion is,that anybody taking any drug,has to manage and report any changes in the change of the illness,side effects etc themselves.Those prescribing,developing and treating are not mind readers.Each patient/person is responsible for themselves and as such cannot lay the whole blame on other parties,when they themselves are in effect the integral part of what is in fact an ongoing trial of a drug after initial trials.This in reality is forever ongoing,there is in fact NO END.For example.What is the effect of this drug on a persons body when passed on/down genetically,Children,Grand children.This is impossible to predict.Will you then sue in 20 years time.It is unforeseen.A simplified example and well known case is"Thalidomide".Of course,those children deserve some recompense,but who was to know or predict that.The children did not injest the drug themselves,but yet pay the biggest price.
So all those people engaging in the DA thrust for compensation and continually arguing on here,even amongst themselves.You really need to take a little responsibility for your own actions.You won't though,because that would effectively put a big dark line through your case.Yet is in fact the truth.The bodies you are seeking compensation from know this,as do the solicitors,tearing hair out trying to make you see the complexity of the whole situation
My opinion is,that you need to stop jumping on the "blame culture" band wagon.Especially when slating organisations that are actually trying to alleviate your suffering.Get real,take account for your own actions and behaviour,individual part in the whole downfall of maybe finances,home or life.It happens every day to people not on DA's.Search your own hearts and you may find deep inside a number of key moments which YOU,yes YOU yourself were ultimately to blame for most of your own woes.However,it is so easy to hide behind a smokescreen of blame to satiate perhaps the ongoing guilt you are feeling for messing up,taking your eye off the ball,hiding from embarrassment and shame.
It is so easy to apportion total blame on the pharmaceutical industry and Health professional scapegoats.Not to admit your own flaws and inadaquacies.To feign ignorance,yet be so knowledgeable in your own accusations.Not seeing your own faults and personal blame in the whole equation,is the easiest thing to do.When losing sight of the bigger picture,most people can see.Turns bitterness and desperation to" pass the Buck" so easily on to the people who were trying to help you,and continue to supply the much needed drugs you desperately need to function.Praying the very people you criticise may One day find the much needed cure you long for.
A realistic outlook and opinion
Yes I have been there,so understand all sides
Take care
Titan
@Titan A lucid, well thought out and intelligent view on the problem.
I dont want to see my neuro out of a job
I dont want to see a drug company go bust, I dont want even want the drugs to be taken off the market!
I dont want to see a charity close.
All the above provide a service to PWP.
What I would like to see is PWP affected by these drugs be realistic in their expectations for damages.
I would like to see the PUK supporting the affected PWP in the UK by at least providing them with some representation (these are ill people who need support. Research is not the be all and end all, support and information on how to live with the illness are more important to me.
The recent videos made by the PUK are financed by GSK the manufacturer of Requip.
That's to be commended they are putting something back into the problem. What a waste if the content of those videos is never implemented.
No one wanted this to happen, operating a blame culture gets us nowhere, including blaming PWP for wanting recompense for costs they incurred because they weren't monitored properly.
We are all in this together. Dealing with our drugs is a learning curve for us all.
We need drug companies, neuros and charity.
But they need us too. Without us there is no need for any of them.
With proper screening and monitoring this problem can be minimilised.
By utilising the experience of those affected by side effects better ways to take the drugs can be found.
Avoid lawyers and work together to get the solution.
Anyone who takes these drugs can be affected all it takes is a sudden change of circumstances to lose control.
I dont want to see a drug company go bust, I dont want even want the drugs to be taken off the market!
I dont want to see a charity close.
All the above provide a service to PWP.
What I would like to see is PWP affected by these drugs be realistic in their expectations for damages.
I would like to see the PUK supporting the affected PWP in the UK by at least providing them with some representation (these are ill people who need support. Research is not the be all and end all, support and information on how to live with the illness are more important to me.
The recent videos made by the PUK are financed by GSK the manufacturer of Requip.
That's to be commended they are putting something back into the problem. What a waste if the content of those videos is never implemented.
No one wanted this to happen, operating a blame culture gets us nowhere, including blaming PWP for wanting recompense for costs they incurred because they weren't monitored properly.
We are all in this together. Dealing with our drugs is a learning curve for us all.
We need drug companies, neuros and charity.
But they need us too. Without us there is no need for any of them.
With proper screening and monitoring this problem can be minimilised.
By utilising the experience of those affected by side effects better ways to take the drugs can be found.
Avoid lawyers and work together to get the solution.
Anyone who takes these drugs can be affected all it takes is a sudden change of circumstances to lose control.
Thanks Leyther for patiently explaining yet again the position of those who have suffered the side affects of d.a.'s but I fear that as the saying goes "There's none so blind as those who do not want to see". I'd better say yet again that I am not personally affected.
This thread has two parallel focuses which often seem to come into conflict in the postings which is unfortunate.
There are the stories people have about their own experiences and that needs a supportive and understanding environment.
There are questions and ideas about the way forward which inevitably involve debate and disagreement. Is it possible to discuss how to address these issues listening to the differing viewpoints, they may come across as hurtful but usually that is not the posters intention.
Leyther
I'm Unclear. Three statements in your post,
What I would like to see is PWP affected by these drugs be realistic in their expectations for damages.
I would like to see the PUK supporting the affected PWP in the UK by at least providing them with some representation
Avoid lawyers and work together to get the solution
Interesting thoughts so how are you asking PUK to provide representation for damages but avoid lawyers?
There are the stories people have about their own experiences and that needs a supportive and understanding environment.
There are questions and ideas about the way forward which inevitably involve debate and disagreement. Is it possible to discuss how to address these issues listening to the differing viewpoints, they may come across as hurtful but usually that is not the posters intention.
Leyther
I'm Unclear. Three statements in your post,
What I would like to see is PWP affected by these drugs be realistic in their expectations for damages.
I would like to see the PUK supporting the affected PWP in the UK by at least providing them with some representation
Avoid lawyers and work together to get the solution
Interesting thoughts so how are you asking PUK to provide representation for damages but avoid lawyers?
Hikoi
Expectations of millions in damages is likely to be over the top and will antagonise the situation.
PUK involvement. They are Suma is involved.
Avoid lawyers. Since lawyer route has been unsuccessful maybe we need a more mediation style route
Legal advice would be necessary but avoid aggression.
We are talking about PWP with 10 yrs plus who need some help.
finding out how many think they have a claim would be a good start PUK could help
Expectations of millions in damages is likely to be over the top and will antagonise the situation.
PUK involvement. They are Suma is involved.
Avoid lawyers. Since lawyer route has been unsuccessful maybe we need a more mediation style route
Legal advice would be necessary but avoid aggression.
We are talking about PWP with 10 yrs plus who need some help.
finding out how many think they have a claim would be a good start PUK could help
Eileen patricia
Knowledge of this issue slone makes it less likely you will be affected
Knowledge of this issue slone makes it less likely you will be affected
Dear all i have some information which could be useful. ii became compulsive behavior, to cut a longe storey short i stole fropm mu8 emplopyer and now they want there money back and have issue proceedings ( civil ) well this was not my faultit was down to the drugs and lack of informaion in fo from I have put a defenrce instatimf yhisbuty i know we have a numb er of people who have suffered and may wish to claim so must not pdudice them
I agree with later comments about mediation as the solicor route has proved difficult
I need to move quickly I see Suma has been in touch with some solicitors.
Dw we want to do a class acion on this
Regards
I agree with later comments about mediation as the solicor route has proved difficult
I need to move quickly I see Suma has been in touch with some solicitors.
Dw we want to do a class acion on this
Regards
Hi,
I am so sorry that you find yourself in this nightmare.
I can only suggest you phone the helpline as many of us have had dealings with lawyers and got nowhere as the legal forces are against us and for the rich drug firms who refuse to take responsibility for the havoc they create.
One member,Ray of Sunshine,was acquitted in court and found expert witnesses to argue successfully that he was effectively insane on Dopamine Agonists.
Past posts would give you access to messaging him.
Good luck!
GG
I am so sorry that you find yourself in this nightmare.
I can only suggest you phone the helpline as many of us have had dealings with lawyers and got nowhere as the legal forces are against us and for the rich drug firms who refuse to take responsibility for the havoc they create.
One member,Ray of Sunshine,was acquitted in court and found expert witnesses to argue successfully that he was effectively insane on Dopamine Agonists.
Past posts would give you access to messaging him.
Good luck!
GG
We need you Blue-eyes!
Are you still in post?
GG
X
Are you still in post?
GG
X
Still wondering about your role Blue-eyes.
GG
GG
Still wondering.
Could someone from PDUK let us know if Blue-eyes is still employed to help in the DA/OCD fight?
Thanks
GG
Thanks
GG