Well this must be a first.
24 hours since a new post on a DA thread without a response!
Hi Leyther
I wonder if the lack of a response is because others, like me, are just so sad,exhausted and disillusioned.
After all the posts, the TV programmes, the newspaper articles,etc etc, people with lives wrecked by these drugs STILL stumble into the forum desperately trying to make sense of the destruction of their relationships, the betrayals, the list goes on, and PDUK wrings its hands, professionals deny the problem and legal teams turn their heads away.
There is NO excuse for this situation and I despair of the situation.
My heart goes out to the poor souls enmeshed in this quagmire but I am worn out with battling against the greed and self-delusion of those responsible.
GG
x
I wonder if the lack of a response is because others, like me, are just so sad,exhausted and disillusioned.
After all the posts, the TV programmes, the newspaper articles,etc etc, people with lives wrecked by these drugs STILL stumble into the forum desperately trying to make sense of the destruction of their relationships, the betrayals, the list goes on, and PDUK wrings its hands, professionals deny the problem and legal teams turn their heads away.
There is NO excuse for this situation and I despair of the situation.
My heart goes out to the poor souls enmeshed in this quagmire but I am worn out with battling against the greed and self-delusion of those responsible.
GG
x
Hi all,I agree with GG, I too am worn out with it all, however I would still join forces if others were prepared to force the Government to look at this 3 year rule thing.
Perhaps an e petition could be forged and we encouraged others to sign it, as long as we got enough signatures the Government would have to look at it. It would be a start at least.
I feel so helpless and angry at times and no matter how hard I try, I just cannot move on from it, it all seems so unjust.
Glenchass
Perhaps an e petition could be forged and we encouraged others to sign it, as long as we got enough signatures the Government would have to look at it. It would be a start at least.
I feel so helpless and angry at times and no matter how hard I try, I just cannot move on from it, it all seems so unjust.
Glenchass
Hang on Leyther I'm still reading it ...
I was going to reply a couple of days ago, before you posted your post, in fact.
I saw an episode of casualty or was it holby city, where the story involved a woman with with anorexia and cancer who decided she didn't want treatment.
Because she was deemed to be rational and in charge of her faculties, her wishes were carried out. However she said that previously she had been sectioned and received treatment.
So if someones partner was affected by DA's, are clinicians saying "The seem to be in charge of their faculties, they should therefor be allowed to choose to stay on their meds". Is the answer to have them sectioned before they are forced to change meds,
If so whats the procedure?
How far do they need a person to go before they are made to change, how many people need to get hurt?
I was going to reply a couple of days ago, before you posted your post, in fact.
I saw an episode of casualty or was it holby city, where the story involved a woman with with anorexia and cancer who decided she didn't want treatment.
Because she was deemed to be rational and in charge of her faculties, her wishes were carried out. However she said that previously she had been sectioned and received treatment.
So if someones partner was affected by DA's, are clinicians saying "The seem to be in charge of their faculties, they should therefor be allowed to choose to stay on their meds". Is the answer to have them sectioned before they are forced to change meds,
If so whats the procedure?
How far do they need a person to go before they are made to change, how many people need to get hurt?
has anyone tried suing their nhs trust on grounds of negligence which is a tort and which has a 6 year limitation?
Nothing like trying to sue a drugs company to encourage it not to pursue research in that condition
Without these drugs we may suffer more, it is very sad if marriages break down because of side effects, but is revenge the best course of action?
I only put it in as a question.
Good luck to you all
R
Without these drugs we may suffer more, it is very sad if marriages break down because of side effects, but is revenge the best course of action?
I only put it in as a question.
Good luck to you all
R
Its a fair point Draward.
We need the drugs which are useful when monitored for side effects.
I dont think revenge is the issue really. I think that is borne out of frustration because of the drug company intransigence and no one willing to represent us.
I posted trying to isolate the actual problem rather than the symptoms aiming to demonstrate that its not just a gambling habit that could happen to anyone its a specific cause and effect of the drug.
I had a radical thought, do we have value to drug companies for research due to our experiences.
Could we be compensated and the drug co get some benefit from our feedback.
A win win situation.
We need the drugs which are useful when monitored for side effects.
I dont think revenge is the issue really. I think that is borne out of frustration because of the drug company intransigence and no one willing to represent us.
I posted trying to isolate the actual problem rather than the symptoms aiming to demonstrate that its not just a gambling habit that could happen to anyone its a specific cause and effect of the drug.
I had a radical thought, do we have value to drug companies for research due to our experiences.
Could we be compensated and the drug co get some benefit from our feedback.
A win win situation.
That's an interesting point that you make Leyther, but I'm not sure what you really mean. Do you mean we approach the company and offer our experiences? If so I do not see how that could compensate us. Could you elaborate a little please, I'm pretty slow on the uptake these days?
glenchass
glenchass
Hello Draward, having read your comment am I to take it that you have not been effected by DA's in quite the same was as some of us? If you had I do not believe that you would see our anxieties about not being able to sue the company, as revenge. I, like many other's lost everything that we as a couple had worked for over many years. My house is still not safe and we are hanging onto it by our fingernails, our lives were ruined, but we have worked hard to stay together despite the despicable actions that I undertook whilst using these drugs. It certainly is not revenge it is simply to try to take some of the financial pressure off us which affects us on a daily basis still.
I know you say in your post that's it's just a question but it seems an inappropriate or naive one to say the least, remember, walk in somebodies shoes before judging them.
Glenchass
I know you say in your post that's it's just a question but it seems an inappropriate or naive one to say the least, remember, walk in somebodies shoes before judging them.
Glenchass
I agree totally with Glenchass.
I do not seek revenge. I needed the consultant who had prescribed ever-increasing amounts of RequipXL (36 mg for the last 3 years) to admit he had been wrong. He made a statement to the police that my deranged husband "had capacity" meaning he was in full possession of his faculties, and this made it impossible for them to prosecute the young Malasian woman who had targeted him and received over £30,000(our savings for future care). If the drugs had been responsible for him not having "capacity" they would have charged her and tried to get the money repaid.
The response of GlaxoSmithKline was that my husband made a conscious decision to carry on taking the drug and was responsible for the entire collapse of our world.
If only those who made and prescribed the drugs had admitted they were responsible it would have made a return to some sort of life together much easier.
If they had compensated us for the loss of our savings it would have been even easier.
There is no amount of money which would compensate us for the agony we and our friends and family suffered or our ruined future.
GG
I do not seek revenge. I needed the consultant who had prescribed ever-increasing amounts of RequipXL (36 mg for the last 3 years) to admit he had been wrong. He made a statement to the police that my deranged husband "had capacity" meaning he was in full possession of his faculties, and this made it impossible for them to prosecute the young Malasian woman who had targeted him and received over £30,000(our savings for future care). If the drugs had been responsible for him not having "capacity" they would have charged her and tried to get the money repaid.
The response of GlaxoSmithKline was that my husband made a conscious decision to carry on taking the drug and was responsible for the entire collapse of our world.
If only those who made and prescribed the drugs had admitted they were responsible it would have made a return to some sort of life together much easier.
If they had compensated us for the loss of our savings it would have been even easier.
There is no amount of money which would compensate us for the agony we and our friends and family suffered or our ruined future.
GG
Glenchass. Its a mad idea I had of working with the drug companies so that both parties got some benefit instead of an entrenched position. Just trying to stimulate ideas and a different approach.
If anyone posting on this forum is serious about obtaining compensation then they need to stop posting their intended strategies on here for a start. Posting on a forum that has public access to anyone is not a good idea.
Especially when the site owners receive funding from the manufacturer of a DA.
If anyone posting on this forum is serious about obtaining compensation then they need to stop posting their intended strategies on here for a start. Posting on a forum that has public access to anyone is not a good idea.
Especially when the site owners receive funding from the manufacturer of a DA.
Leyther, you are spot on. If you are going to get a class action together do it 'in camera'. Contact each other, talk amongst yourselves and come up with a plan of action. Endlessly discussing this problem on a public forum is not a good idea. Do you not think the manufacturers are reading this?
As it stands, they are not worried about you....yet. This loose affiliation of people who have been seriously affected by these drugs does not scare them.
Draward brought up a good point. I think he or she deserves not to be summarily shot down in flames.
As it stands, they are not worried about you....yet. This loose affiliation of people who have been seriously affected by these drugs does not scare them.
Draward brought up a good point. I think he or she deserves not to be summarily shot down in flames.
What I will say in public is that I believe:
We need to address this issue once and for all in the UK. Forget USA etc.
It needs to be a positive action by ALL parties working together.
PWP; Drug Company; Neurologist team AND support from the charities.
Lets start at the bottom rung:
New patients and their nominated carer (spouse,partner, friend etc) MUST be informed of the behaviour changing side effects of DAs. An info leaflet about PD and DA's MUST be given.
They MUST be assessed at diagnosis to establish their behaviour pre DA use and then assessed at every future clinic. The carer MUST have an input to this as a comparison to the patients perception of their own behaviour. The assessment could be a short questionnaire filled in beforehand and discussed in clinic. If the carer can not attend Clinic they MUST either contact or be contacted to provide input.
Existing patients MUST adopt the same procedure. Where problems are found there MUST be an action plan to reduce DAs and a follow up care plan. The behaviour does not stop immediately on cessation of these drugs.
I emphasise MUST because you are dealing with insidious behaviour that causes the patient to become extremely secretive and morally corrupt. You have to be consistent and thorough to prevent it. Neurologist teams need some training to understand the nature of these behaviours from the patients perspective.
With these procedures in force the patient is protected and the drug company no longer in fear of litigation.
The charity forums MUST still highlight the problem and provide support.
Which leads me to compensation.
Dopamine Agonists are useful drugs in the treatment of PD, it should be our intention to manage them not ban them.
Those affected by behavioural problems need to be realistic and sensible in the valuation of their claim. If you want to stick it out for millions you may have a long fight and a posthumous award ahead of you, if you win that is.
There is only one winner in any lawsuit; the lawyers. They are fighting for their percentage not your recompense. Greed of this nature helps no one. We don't get compensated,the drug companies become entrenched and time ticks on.
I believe we need to broker a deal with the drug companies, with some legal representation of course. Mediation rather than litigation. If the prevention procedures are in place we will have ring fenced the issue. We then have a finite number of claims to resolve. Furthermore the drug company can still make a profit because its drug will still be on the market.
A win win situation; as near as you are going to get I think.
How do we do this:
We are ill people; it is difficult for us; we don't have any influence or contacts in the pharmaceutical world.
We need someone who does.
We also need to play the numbers game. How many affected and to what degree and at what cost. Then we can arrive at a likely total cost.
I may appear to be an opinionated twat at times but I genuinely want an end to this because it is detrimental to the affected individuals and to the whole UK PD community.
As far as I know I have taken more Mirapexin than anyone else on the planet (8.4mg - max dose 3.14mg)
I have had over 5 years of extreme behaviour because of this drug which impacted on my career, my relationships, my family and my life. I have seen friends suffer in the same way or worse. I also found the behaviour does not end on stopping the drug it carries on, in my case some 3 years after reducing my Mirapexin to 1.05mg I finally feel I'm free of its clutches.
We have enough going on dealing with PD we don't need this shit. It has been a topic on this forum for years and all it has ever done is divide opinion and set us at each others throats.
Lets all work together and put an end to it.
PLEASE
Leyther
We need to address this issue once and for all in the UK. Forget USA etc.
It needs to be a positive action by ALL parties working together.
PWP; Drug Company; Neurologist team AND support from the charities.
Lets start at the bottom rung:
New patients and their nominated carer (spouse,partner, friend etc) MUST be informed of the behaviour changing side effects of DAs. An info leaflet about PD and DA's MUST be given.
They MUST be assessed at diagnosis to establish their behaviour pre DA use and then assessed at every future clinic. The carer MUST have an input to this as a comparison to the patients perception of their own behaviour. The assessment could be a short questionnaire filled in beforehand and discussed in clinic. If the carer can not attend Clinic they MUST either contact or be contacted to provide input.
Existing patients MUST adopt the same procedure. Where problems are found there MUST be an action plan to reduce DAs and a follow up care plan. The behaviour does not stop immediately on cessation of these drugs.
I emphasise MUST because you are dealing with insidious behaviour that causes the patient to become extremely secretive and morally corrupt. You have to be consistent and thorough to prevent it. Neurologist teams need some training to understand the nature of these behaviours from the patients perspective.
With these procedures in force the patient is protected and the drug company no longer in fear of litigation.
The charity forums MUST still highlight the problem and provide support.
Which leads me to compensation.
Dopamine Agonists are useful drugs in the treatment of PD, it should be our intention to manage them not ban them.
Those affected by behavioural problems need to be realistic and sensible in the valuation of their claim. If you want to stick it out for millions you may have a long fight and a posthumous award ahead of you, if you win that is.
There is only one winner in any lawsuit; the lawyers. They are fighting for their percentage not your recompense. Greed of this nature helps no one. We don't get compensated,the drug companies become entrenched and time ticks on.
I believe we need to broker a deal with the drug companies, with some legal representation of course. Mediation rather than litigation. If the prevention procedures are in place we will have ring fenced the issue. We then have a finite number of claims to resolve. Furthermore the drug company can still make a profit because its drug will still be on the market.
A win win situation; as near as you are going to get I think.
How do we do this:
We are ill people; it is difficult for us; we don't have any influence or contacts in the pharmaceutical world.
We need someone who does.
We also need to play the numbers game. How many affected and to what degree and at what cost. Then we can arrive at a likely total cost.
I may appear to be an opinionated twat at times but I genuinely want an end to this because it is detrimental to the affected individuals and to the whole UK PD community.
As far as I know I have taken more Mirapexin than anyone else on the planet (8.4mg - max dose 3.14mg)
I have had over 5 years of extreme behaviour because of this drug which impacted on my career, my relationships, my family and my life. I have seen friends suffer in the same way or worse. I also found the behaviour does not end on stopping the drug it carries on, in my case some 3 years after reducing my Mirapexin to 1.05mg I finally feel I'm free of its clutches.
We have enough going on dealing with PD we don't need this shit. It has been a topic on this forum for years and all it has ever done is divide opinion and set us at each others throats.
Lets all work together and put an end to it.
PLEASE
Leyther
Hi Spam, I hadn't even considered the fact that the drug companies may be reading this, or that PDUK are funded by them and the thought horrifies me. U would like to thank you for pointing it out. However this, for the moment, is the only way we are able to communicate, given the geographical differences we all face.
I am quite serious about joining forces if others want to discuss it please feel free to e mail me privately.
I just want to say that I certainly wan't 'shooting Draward down in flames'. I was simply stating the fact that people who have not had the experience do not seem to take on board the effects it has on lives. I apologies if it appeared that I was having a go at Draward.
Glenchass
I am quite serious about joining forces if others want to discuss it please feel free to e mail me privately.
I just want to say that I certainly wan't 'shooting Draward down in flames'. I was simply stating the fact that people who have not had the experience do not seem to take on board the effects it has on lives. I apologies if it appeared that I was having a go at Draward.
Glenchass
Once again Lwyther has hit the nail on the head.
This issue must be divided into two, entirely separate sections.
1/ The warnings given to PD sufferers and their carers about the possible problems caused by DA's. This issue is not disputed by anyone and all will agree, I think, that this is a subject and an activity that PD UK can help with.
2/ Compensation for people affected. This section needs the help of lawyers and I, for one, do not want to see a disproportionate amount of PD UK's money and time spent on a legal challenge that does not help us all.
Keep the issues separate.
Keep any court action quiet until you've got aomething that'll work in the UK.
Let PD UK get on with providing money to researchers so that we ALL can get rid of this disease that is blighting our lives.
This issue must be divided into two, entirely separate sections.
1/ The warnings given to PD sufferers and their carers about the possible problems caused by DA's. This issue is not disputed by anyone and all will agree, I think, that this is a subject and an activity that PD UK can help with.
2/ Compensation for people affected. This section needs the help of lawyers and I, for one, do not want to see a disproportionate amount of PD UK's money and time spent on a legal challenge that does not help us all.
Keep the issues separate.
Keep any court action quiet until you've got aomething that'll work in the UK.
Let PD UK get on with providing money to researchers so that we ALL can get rid of this disease that is blighting our lives.
Spam i am so exhausted listening to people making comments such as you have. We all want a cure but this issue is going to continue as long as DA's are effecting people and medics are not responding appropriately.
Your post shows that you clearly do not share our opinions. We have every right to seek compensation regardless of what you or anybody else thinks. If you don't agree don't read this section. It's very hard when every day of your life is blighted, not just with managing pd but still having to face the consequences of your actions whilst on the drugs. All we ask is for is justice nothing else. I do not seek millions, I simply seek some help to pay the massive debts and help to keep my home.
When statements are made, such as you have, it forces people away from the site. This forum is for all of us and unfortunately that includes those who need to sound off about their problems which include the very subject your statement appears to be trying to subdue. I for one will not be quiet and I will not rest until something is done. We are all members of this P Uk and as such deserve to have the same rights to help help from them as others.
I firmly believe there will never be a cure for this disease, it would cost the pharmaceuticals too much to allow that to happen, perhaps you should read 'Monkey's in the Middle' by Nick Nelson to give yous some idea of what I am saying. In addition, the fact that this disease even exists keeps thousands of people in jobs, some very highly paid! Why on earth would they want to help us get justice from the very people that fund their very lively hood.
We know full well that we will not be supported by P Uk in any action that we try to take, so do not be concerned about it affecting research funding...you will still get that.
In conclusion, I for one will not be bullied away from saying what I want to about the subject of seeking justice for what has happened to me and many others. On this basis I will continue to post on this form my thoughts, wishes and concerns about the catastrophic effects of taking DA's and I believe that there are many others that feel the same.
Glenchass
Your post shows that you clearly do not share our opinions. We have every right to seek compensation regardless of what you or anybody else thinks. If you don't agree don't read this section. It's very hard when every day of your life is blighted, not just with managing pd but still having to face the consequences of your actions whilst on the drugs. All we ask is for is justice nothing else. I do not seek millions, I simply seek some help to pay the massive debts and help to keep my home.
When statements are made, such as you have, it forces people away from the site. This forum is for all of us and unfortunately that includes those who need to sound off about their problems which include the very subject your statement appears to be trying to subdue. I for one will not be quiet and I will not rest until something is done. We are all members of this P Uk and as such deserve to have the same rights to help help from them as others.
I firmly believe there will never be a cure for this disease, it would cost the pharmaceuticals too much to allow that to happen, perhaps you should read 'Monkey's in the Middle' by Nick Nelson to give yous some idea of what I am saying. In addition, the fact that this disease even exists keeps thousands of people in jobs, some very highly paid! Why on earth would they want to help us get justice from the very people that fund their very lively hood.
We know full well that we will not be supported by P Uk in any action that we try to take, so do not be concerned about it affecting research funding...you will still get that.
In conclusion, I for one will not be bullied away from saying what I want to about the subject of seeking justice for what has happened to me and many others. On this basis I will continue to post on this form my thoughts, wishes and concerns about the catastrophic effects of taking DA's and I believe that there are many others that feel the same.
Glenchass
Hi
This thread and the subject is always going to cause debate . And making pwp aware. An interesting read and the views of those who have experienced the devastating effects of the medication pwp take. We can all express our concerns and sometimes we can over react to others and their opinions . So that is why we have forums to chat , share , debate and learn from others.
Glenchass I do not think anyone here is been bullied , strong opinions and views but not bullies.
PB
This thread and the subject is always going to cause debate . And making pwp aware. An interesting read and the views of those who have experienced the devastating effects of the medication pwp take. We can all express our concerns and sometimes we can over react to others and their opinions . So that is why we have forums to chat , share , debate and learn from others.
Glenchass I do not think anyone here is been bullied , strong opinions and views but not bullies.
PB
I am no bully.
Spam
I dont think we can keep the 2 issues entirely separate from PUK involvement.
What I am suggesting is an alternative to litigation.
This may need the help of the PUK or some such organisation that has contact with the drug companies to help get the ball rolling and also to help with some costs such as those incurred establishing the numbers affected.
Without the backing of the PUK I dont think it would work.
I dont anticipate a huge cost and it would be a line drawn under the issue so there should be no more.
It's a different take on the situation, an attempt at a solution or at least getting folk to think differently.
Glenchass
Spam's advice is good. Dont post on a open forum any information that may be used against your case if you if you intend to go into litigation with a drug company.
That's hardly bullying.
I dont think we can keep the 2 issues entirely separate from PUK involvement.
What I am suggesting is an alternative to litigation.
This may need the help of the PUK or some such organisation that has contact with the drug companies to help get the ball rolling and also to help with some costs such as those incurred establishing the numbers affected.
Without the backing of the PUK I dont think it would work.
I dont anticipate a huge cost and it would be a line drawn under the issue so there should be no more.
It's a different take on the situation, an attempt at a solution or at least getting folk to think differently.
Glenchass
Spam's advice is good. Dont post on a open forum any information that may be used against your case if you if you intend to go into litigation with a drug company.
That's hardly bullying.
These posts are fascinating and informative. We have been luckier than some; due to the way our family worked my OH's behavior was easy to notice and we haven't suffered the enormous financial loss that others have. However, the emotional and mental damage has been HUGE. My daughter barely remembers the man her father used to be. Repairing the damage is going to be a long, hard battle. What upsets me more than anything is that his healthcare team decided they knew him better than me; the neuropsychologist who saw him in November stated that his behavior was in keeping with his personality (based on an hour and a half's meeting with him). I have written 10 letters over the last two and a half years, copied to all members of his team, reporting my observations with increasing concern. I was never contacted once by any of them. I attended three appointments where I spoke of my concerns, before OH stopped allowing me to go with him. What is the point of telling us that carers' points of view count and then totally ignoring them?
It's one thing for drug companies to manufacture this crap; it's quite another for the people who are responsible for the care of patients to go on pushing it. If it was prescribed with more caution instead of being the first port of call when diagnosed, then perhaps the profits wouldn't be so rewarding. I accept that for many people dopamine agonists are a blessing. However, for those for whom they are not, more needs to be done. I'm certainly up for joining an group effort.
It's one thing for drug companies to manufacture this crap; it's quite another for the people who are responsible for the care of patients to go on pushing it. If it was prescribed with more caution instead of being the first port of call when diagnosed, then perhaps the profits wouldn't be so rewarding. I accept that for many people dopamine agonists are a blessing. However, for those for whom they are not, more needs to be done. I'm certainly up for joining an group effort.