Thanks for your support olive, I am so sorry to hear of your husband and families problems related to DA's. I have been dx for 12 years now and back then nobody was even informed about the possible side effects of compulsive or obsessional behaviors, so we just took the meds for years. It has destroyed lives over the years and obviously still is, which indicates that for some reason the messages are still not very effective.
The only way that we can combat this is on mass, if anybody wishes to contact me by e mail please feel free to do so.
regards
glenchass
Leyther's suggestions are very useful.
I would like a response from those working for PDUK
eg Suma and Blueeyes, whose remit is to ensure all health workers are fully aware of the problem, and dealing with the drug companies.
The ICD unit has been operating for some time now and little progress seems to be made.
I am still waiting for a legal response explaining how we launch a class action.
GG
I would like a response from those working for PDUK
eg Suma and Blueeyes, whose remit is to ensure all health workers are fully aware of the problem, and dealing with the drug companies.
The ICD unit has been operating for some time now and little progress seems to be made.
I am still waiting for a legal response explaining how we launch a class action.
GG
while i suffer from the side effects of the requip medication im on i was a gambler already so cant blame it all on the drug . but what has got worse is impulsive gambling which has had severe efffects on my state of mind as well as my wallet but im getting help now with the gambling from gamblers anon but is it worthwhile looking to sue the biggies as i call them I DONT KNOW ??
Hi all,
I've made a posting in the 'Where we are at and where we are going at Parkinson's UK' discussion as an update to the whole group.
Suma
I've made a posting in the 'Where we are at and where we are going at Parkinson's UK' discussion as an update to the whole group.
Suma
Thank you Suma,
It is good to read that we may soon have some legal advice about our situation.
Can you tell us how far you have got in dealing with the drug companies and their response to our plight?
It is clear many consultants are still denying these devastating side effects. How much progress is being made in getting the facts across?
GG
It is good to read that we may soon have some legal advice about our situation.
Can you tell us how far you have got in dealing with the drug companies and their response to our plight?
It is clear many consultants are still denying these devastating side effects. How much progress is being made in getting the facts across?
GG
All drugs have side effects, and of course someone should be informed of them before taking them.
I do not believe in the Maxim that you should "walk in someone else's shoes" in order to have an opinion, I doubt that many researchers have PD either.
I think what it boils down to is that we are the "guinea pig" generations for this condition. Hopefully a cure, probably genetic, will be found before our grandchildren begin to suffer. Mistakes, misinformation and just sheer in-competence by professionals will happen, if you get compensation good luck to you, I just hope it doesn't come from money that could be used for research.
I do not believe in the Maxim that you should "walk in someone else's shoes" in order to have an opinion, I doubt that many researchers have PD either.
I think what it boils down to is that we are the "guinea pig" generations for this condition. Hopefully a cure, probably genetic, will be found before our grandchildren begin to suffer. Mistakes, misinformation and just sheer in-competence by professionals will happen, if you get compensation good luck to you, I just hope it doesn't come from money that could be used for research.
I have no particular personal axe to grind but I am dismayed the attitude of people who worry in case a small percentage of Big Pharma's profits or even the funds of Parkinsons UK might be spent on helping people get redress i.e. be helped turn the clock back tto some extent at least financially. Nothing can compensate for the psychological and emotional damage and its a pity that the word compensation has to be used in this context. As you imply, those who have turned out to be guinea pigs are part of the ongoing process of discovery about PD. As such they have contributed to the fact that I, with my family history alcoholic (and much else besides) father and ocd mother, have been able to resist d.a.'s in the last four years. Now that the problem is recognised, thanks to patient power, and in spite of the drug companies I feel much happier that I might have to include d.a.'s some time knowing that there is acknowledgement of the problem. That must be worth a bob or two? In fact, knowing that they might be called to account for side effects might have caused the drug companies to spend more in researching the drugs and less effort down-playing the side effects.
I have no particular personal axe to grind but I am dismayed the attitude of people who worry in case a small percentage of Big Pharma's profits or even the funds of Parkinsons UK might be spent on helping people get redress i.e. be helped turn the clock back tto some extent at least financially. Nothing can compensate for the psychological and emotional damage and its a pity that the word compensation has to be used in this context. As you imply, those who have turned out to be guinea pigs are part of the ongoing process of discovery about PD. As such they have contributed to the fact that I, with my family history alcoholic (and much else besides) father and ocd mother, have been able to resist d.a.'s in the last four years. Now that the problem is recognised, thanks to patient power, and in spite of the drug companies I feel much happier that I might have to include d.a.'s some time knowing that there is acknowledgement of the problem. That must be worth a bob or two? In fact, knowing that they might be called to account for side effects might have caused the drug companies to spend more in researching the drugs and less effort down-playing the side
Re "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"
Goldengirl,
if it is for the consultant to hear and acknowledge the effects of his prescribing would PALS be of any use? I hope that isnt niaive. I have had positive experiences with them on a much smaller matter. I know this is only part of the issue but feeling acknowledged is so important.
Goldengirl,
if it is for the consultant to hear and acknowledge the effects of his prescribing would PALS be of any use? I hope that isnt niaive. I have had positive experiences with them on a much smaller matter. I know this is only part of the issue but feeling acknowledged is so important.
Any company that produces a product for public consumption will have a risk management strategy. This will take into account the potential for that product to cause harm to consumers due to circumstances that only come to light after the product enters the market.
The company will make a judgement as to the potential extent of the problem and allocate a cost to it. They will then either pay an insurer to underwrite the sum or they will make some allowance in the selling price. Either way they will cover at least some if not all costs.
That is sound business management and from what I have read is the usual case in the Pharmaceutical industry.
If the company does not adopt a risk strategy and they are found liable, the monies to pay those patients affected will come out of their profits.
Either way a company will dig its heels before it pays out, that is obvious.
My situation is similar to that of Golden Girl in that I was prescribed Mirapexin in excess of the manufacturers stated maximum dose for 5 years, the last two I was taking 8.4 mg of Mirapexin (max stated dose 3.18mg)
However, I did not question the high dose with my neurologist because I trusted his judgement implicitly. Also the leaflet with the drug stated that I could take in excess of the maximum dose at the discretion to of my neurologist, or words to that effect.
I can only speak from personal experience, I cannot say for sure it was the high dosage that caused my behavioural problems, evidence from other PWP's that I know of indicate that some PWP are susceptible to doses far less than maximum whilst others report no problems on a maximum dose.
The manufacturer's acceptance that behavioural side effects due as a direct result of the drug they manufactured is not in question. Initially the leaflets with my Mirapexin mentioned hypersexuality and gambling problems.
However, this was evidently not adequate as the warnings on the leaflets increased and eventually I was asked if my behaviour had changed by my neurologist. Furthermore, because the of the insidious nature of the drugs side effects, by the time this was asked of me I was too far down the line. I was addicted to the behaviour and only the fact that I was in danger of losing my job led me to voice my problems.
I have no doubt that if I had been financially stable enough to not have to work I would still be on the same high dose.
For the future that means that ALL neurologists need adequate screening programmes for the newly diagnosed and training to recognise the behaviour of those having problems.
Those of us that have been affected already may need an aftercare program.
If these systems are put in place and are both mandatory and consistent the problem of those who require help / compensation can be ring fenced.
These are the PWP who suffered loss, due to a lack of information and monitoring now accepted as a requirement to administer the drugs.
These people need to make themselves known and their loss assessed and valued.
You then have the basis of a claim for compensation.
How do we do it?
Not easy for PWP's for a variety of reasons. We need help from somewhere.
It's either going to be lawyers who will inevitably push the value of the claims up. This creates an entrenched position by the drug companies.
Some have felt the PUK should get involved as the nearest thing to a recognised body for PWP in the UK.
If they at least undertook to help with the assessment and valuation stage, the drug companies would know a settlement figure.
I personally believe we have to be realistic in our personal expectations of a claim sum.
The drug companies also need to recognise that these drugs will still be available after any settlement. They will still be profitable.
This is a huge issue for all PWP and has been for years.
Help from the PUK would be of great advantage in addressing it.
Leyther
The company will make a judgement as to the potential extent of the problem and allocate a cost to it. They will then either pay an insurer to underwrite the sum or they will make some allowance in the selling price. Either way they will cover at least some if not all costs.
That is sound business management and from what I have read is the usual case in the Pharmaceutical industry.
If the company does not adopt a risk strategy and they are found liable, the monies to pay those patients affected will come out of their profits.
Either way a company will dig its heels before it pays out, that is obvious.
My situation is similar to that of Golden Girl in that I was prescribed Mirapexin in excess of the manufacturers stated maximum dose for 5 years, the last two I was taking 8.4 mg of Mirapexin (max stated dose 3.18mg)
However, I did not question the high dose with my neurologist because I trusted his judgement implicitly. Also the leaflet with the drug stated that I could take in excess of the maximum dose at the discretion to of my neurologist, or words to that effect.
I can only speak from personal experience, I cannot say for sure it was the high dosage that caused my behavioural problems, evidence from other PWP's that I know of indicate that some PWP are susceptible to doses far less than maximum whilst others report no problems on a maximum dose.
The manufacturer's acceptance that behavioural side effects due as a direct result of the drug they manufactured is not in question. Initially the leaflets with my Mirapexin mentioned hypersexuality and gambling problems.
However, this was evidently not adequate as the warnings on the leaflets increased and eventually I was asked if my behaviour had changed by my neurologist. Furthermore, because the of the insidious nature of the drugs side effects, by the time this was asked of me I was too far down the line. I was addicted to the behaviour and only the fact that I was in danger of losing my job led me to voice my problems.
I have no doubt that if I had been financially stable enough to not have to work I would still be on the same high dose.
For the future that means that ALL neurologists need adequate screening programmes for the newly diagnosed and training to recognise the behaviour of those having problems.
Those of us that have been affected already may need an aftercare program.
If these systems are put in place and are both mandatory and consistent the problem of those who require help / compensation can be ring fenced.
These are the PWP who suffered loss, due to a lack of information and monitoring now accepted as a requirement to administer the drugs.
These people need to make themselves known and their loss assessed and valued.
You then have the basis of a claim for compensation.
How do we do it?
Not easy for PWP's for a variety of reasons. We need help from somewhere.
It's either going to be lawyers who will inevitably push the value of the claims up. This creates an entrenched position by the drug companies.
Some have felt the PUK should get involved as the nearest thing to a recognised body for PWP in the UK.
If they at least undertook to help with the assessment and valuation stage, the drug companies would know a settlement figure.
I personally believe we have to be realistic in our personal expectations of a claim sum.
The drug companies also need to recognise that these drugs will still be available after any settlement. They will still be profitable.
This is a huge issue for all PWP and has been for years.
Help from the PUK would be of great advantage in addressing it.
Leyther
Thank you Hikoi for caring.
PALS can't help because we always paid to see the consultant and they can't intervene in the private sector.
Since we transferred to the NHS we have so much better care.
We were never told of the existence of the Parkinson's nurse!
Leyther, you write eloquently.
I do hope PDUK respond.
And Suma and Blue-eyes, I am still waiting...
GG
X
PALS can't help because we always paid to see the consultant and they can't intervene in the private sector.
Since we transferred to the NHS we have so much better care.
We were never told of the existence of the Parkinson's nurse!
Leyther, you write eloquently.
I do hope PDUK respond.
And Suma and Blue-eyes, I am still waiting...
GG
X
Well said Leyther. When I was prescribed Requip there were no warnings at all about any possibility of OCD at all and I certainly received no warnings from my neuro. In fact my husband brought his concerns about my behavior to our neurologist and he took me off the meds without telling us why! I only found out why a couple of years later when I saw something about it and put two and two together,at that time I was on 30mg of Requip. I changed neuro's and was told by my new neuro that she would never prescribe more than 24mgs, talk about being in the hands of your doctor!!
We trust these people to know what they are doing and when it all goes wrong we are left to get on with it.
I, like Golden Girl and Leyther believe that Parkinsons UK have a responsibility to help us even if that is only by being given appropriate advise regarding how we can address this issue with the pharmaceutics.
Glenchass
We trust these people to know what they are doing and when it all goes wrong we are left to get on with it.
I, like Golden Girl and Leyther believe that Parkinsons UK have a responsibility to help us even if that is only by being given appropriate advise regarding how we can address this issue with the pharmaceutics.
Glenchass
I was again confronted with the enormity of this problem globally when I talking to a Scandinavian friend who has lost her life savings and now has sold her home to survive (she isn't entitled to benefits at present.).
The problem is international. I know the concern here is local and that is appropriate but I think we can still learn from others experience. Have links have been made with people overseas about their efforts to get compensation? Have their charities been involved and in what way? Although laws are different the drug company concerned is the same.
There are some good ideas here on what needs to be done and some ideas on the next step, deciding how to tackle this. I am new to the discussion so i don't know what has been done so far, whether a meeting has been called, if anyone is collecting background information etc.
The problem is international. I know the concern here is local and that is appropriate but I think we can still learn from others experience. Have links have been made with people overseas about their efforts to get compensation? Have their charities been involved and in what way? Although laws are different the drug company concerned is the same.
There are some good ideas here on what needs to be done and some ideas on the next step, deciding how to tackle this. I am new to the discussion so i don't know what has been done so far, whether a meeting has been called, if anyone is collecting background information etc.
Hikoi
Thanks for your concern and I hope others follow suit.
My Scandinavian friends tell me that the connection between behaviour and DA's goes largely unrecognised over there and is treated in a flippant manner.
All
My opinion, regarding the UK only:
Our dilemma is we have drugs that are useful to all PWP but that have the potential to cause behavioural problems in anyone who takes them. Those behavioural problems are influenced by the individuals circumstance and may have grave consequences or may not even impact on their lives at all
If you have PD there is a strong chance you will encounter Dopamine Agonist's.
The majority of people are now informed about the risks and the need for constant monitoring of their behaviour.
There are a group of PWP who were not made aware of the way in which these drugs affect behaviour at the time when they first took them. They were not directly informed by the person or persons who administered the drug. Due to the nature of the behaviour caused by the drugs subsequent warnings were not effective.
Not everyone in that group of people will have had significant problems warranting compensation of any great magnitude. I can't be number specific because I don't know how many PWP are involved.
So we are talking about:
The PWP who took DA's and had behavioural problems as a result of the side effects of these drugs.
These problems were significant enough in their lives to cause them loss that required financial recompense.
The side effects in question may or may not have been known at the time. They may have been included on the leaflet with the drugs. However, a PWP is in no position to understand the terminology and to take heed.
Subsequent actions by the medical profession have shown the answer to be in the screening, informing and monitoring of the patient taking the drug.
Things I would highlight.
The symptomatic nature of the behaviour is relevant only in valuing the damages. The amount of money gambled or the distress caused by a patients sexual inclinations. They are not the cause of the problem they are a symptom.
The essence of the issue is that; at the time the drugs were prescribed there were no procedures in place to inform or monitor the patient at all and that future attempts to do so were inadequate; the patient was therefore unprotected from the potential behavioural problems.
The facts that behaviour such as gambling, hypersexuality etc were known side effects and that procedures were eventually implemented ie your consultant started asking about your behaviour at clinic show the extent of the problem.
Questions to think about:
Why did not receive a letter from my neurologist / GP explaining the problem and that I was at risk with contacts helplines etc?
Who is ultimately responsible for my care as a patient?
Neurologist? GP? The MHRA (who license the drug)? The Department of Health?
Ultimately it may be the pharmaceutical company, however, seeking redress against them is beset by difficulty. They are very powerful and have clever lawyers. Those who have succeeded, like in the recent French case, have had to reveal their private lives to the world. So only the very brave succeed.
I have no contract with the drug company. I am a patient in the care of the NHS and that care has been inadequate. Maybe it's time we looked at the responsible bodies in the UK and let them take it up with the manufacturers of the drug as necessary.
Leyther
Thanks for your concern and I hope others follow suit.
My Scandinavian friends tell me that the connection between behaviour and DA's goes largely unrecognised over there and is treated in a flippant manner.
All
My opinion, regarding the UK only:
Our dilemma is we have drugs that are useful to all PWP but that have the potential to cause behavioural problems in anyone who takes them. Those behavioural problems are influenced by the individuals circumstance and may have grave consequences or may not even impact on their lives at all
If you have PD there is a strong chance you will encounter Dopamine Agonist's.
The majority of people are now informed about the risks and the need for constant monitoring of their behaviour.
There are a group of PWP who were not made aware of the way in which these drugs affect behaviour at the time when they first took them. They were not directly informed by the person or persons who administered the drug. Due to the nature of the behaviour caused by the drugs subsequent warnings were not effective.
Not everyone in that group of people will have had significant problems warranting compensation of any great magnitude. I can't be number specific because I don't know how many PWP are involved.
So we are talking about:
The PWP who took DA's and had behavioural problems as a result of the side effects of these drugs.
These problems were significant enough in their lives to cause them loss that required financial recompense.
The side effects in question may or may not have been known at the time. They may have been included on the leaflet with the drugs. However, a PWP is in no position to understand the terminology and to take heed.
Subsequent actions by the medical profession have shown the answer to be in the screening, informing and monitoring of the patient taking the drug.
Things I would highlight.
The symptomatic nature of the behaviour is relevant only in valuing the damages. The amount of money gambled or the distress caused by a patients sexual inclinations. They are not the cause of the problem they are a symptom.
The essence of the issue is that; at the time the drugs were prescribed there were no procedures in place to inform or monitor the patient at all and that future attempts to do so were inadequate; the patient was therefore unprotected from the potential behavioural problems.
The facts that behaviour such as gambling, hypersexuality etc were known side effects and that procedures were eventually implemented ie your consultant started asking about your behaviour at clinic show the extent of the problem.
Questions to think about:
Why did not receive a letter from my neurologist / GP explaining the problem and that I was at risk with contacts helplines etc?
Who is ultimately responsible for my care as a patient?
Neurologist? GP? The MHRA (who license the drug)? The Department of Health?
Ultimately it may be the pharmaceutical company, however, seeking redress against them is beset by difficulty. They are very powerful and have clever lawyers. Those who have succeeded, like in the recent French case, have had to reveal their private lives to the world. So only the very brave succeed.
I have no contract with the drug company. I am a patient in the care of the NHS and that care has been inadequate. Maybe it's time we looked at the responsible bodies in the UK and let them take it up with the manufacturers of the drug as necessary.
Leyther
Well laid out ,Leyther
Yet again we circle back to the need for co-ordination.
We need PDUK to liaise with Pharmaceutical companies involved,
NHS, government bodies, consultants etc, alongside legal advice , to find a way forward.
I keep repeating that we are not looking for PDUK to compensate us but to speak up on our behalf.
We read and re-read statements from the Impulsive and Compulsive behaviour unit of PDUK, and Blue-eyes, attached to them to work as a victim for victims.
Can we have an up-to-date response about their contacts and progress with these groups and their willingness or not to represent us and co-ordinate action,including acquiring a full list of victims (? via newspaper adverts).
There are so many of us feelinf abandoned and suffering.
GG
Yet again we circle back to the need for co-ordination.
We need PDUK to liaise with Pharmaceutical companies involved,
NHS, government bodies, consultants etc, alongside legal advice , to find a way forward.
I keep repeating that we are not looking for PDUK to compensate us but to speak up on our behalf.
We read and re-read statements from the Impulsive and Compulsive behaviour unit of PDUK, and Blue-eyes, attached to them to work as a victim for victims.
Can we have an up-to-date response about their contacts and progress with these groups and their willingness or not to represent us and co-ordinate action,including acquiring a full list of victims (? via newspaper adverts).
There are so many of us feelinf abandoned and suffering.
GG
Perhaps we, the sufferers, should start a working party or Quango,having read the posts, I am sure there are enough people to make a very effective one. It appears that many of us are not impressed by the "experts". They need advice and help from the real experts, in order to proceed more efficiently.
It may have already been tried, I don't know, but if not is it worth trying?
or am I in cloud cuckoo land here?
It may have already been tried, I don't know, but if not is it worth trying?
or am I in cloud cuckoo land here?
Hi all,
I’ve been in and out of the office recently and so not really in a position to add to the debate until now. I think Leyther eloquently describes the complexity of the issues that comes with this topic. Fundamentally what we know is that there are certain medications that bring tremendous benefit to the majority of people who use them, but for some, they lead to impulsive and compulsive behaviour. This may manifest as a spectrum of behaviours but for some, these lead to shattering consequences on both the person and those around them. All of this needs to be taken into consideration as it influences looking at way forwards.
What seems to be coming across in the posts is the question of responsibilities. What we at Parkinson’s UK are working towards is minimising the risk of impulsive and compulsive behaviour occurring and where it does occur, to minimise the impact of the consequences. The former will only happen through changes in clinical practice – it is now recognised that impulsive and compulsive behaviour is a potential risk, but we cannot guarantee that this is consistently part of the assessment process every person undergoes prior starting medication. Therefore we are focussing on educating all prescribing consultants to accept the incidence of impulsive and compulsive behaviour and on establishing evaluation against known risk factors prior to medication being administered as standard clinical practice. This is in addition to raising awareness of impulsive and compulsive behaviour with a range of professional groups as they may be able to monitor and pick up on changes as well as being in a position to offer support should the behaviour occur (I’m thinking particularly groups like psychologists here).
In terms of minimising the impact where it does occur, I’ve mentioned previously about developing support for those around the person experiencing impulsive and compulsive behaviour (just on a slight tangent here, if you are a carer of someone who has had impulsive and compulsive behaviour, you may be interested in a post made last week on the Research forum requesting volunteers for a new research study on carers’ experiences being run by Dr Eamonn McKeown – the link is http://bit.ly/Wi0Vd4). We are also educating other organisations who offer support for issues such as gambling addictions so that they are fully understanding of this phenomenon and thus able to offer the most appropriate support.
So things are happening which will make a difference in the future. However, and not surprisingly, many are dealing with the impacts of what has gone on before and want this to be acknowledged and addressed in some way. From other posts I’ve made, you will know that engaging legal organisations even for a Q&A session to answer your questions about legal recourse has been difficult – whilst it currently looking like an organisation might be able to do this, it would then lead to thoughts of next steps and, coming back to Leyther’s point, who is responsible for what you have experienced in each of your individual cases. This is crucial as the basis for whatever collective action we as a charitable organisation can legitimately take will lie in what the commonalities there are between your experiences.
I appreciate the honest postings you are all making and I will continue to update you where I can of areas of progress with this multifaceted issue.
Suma
I’ve been in and out of the office recently and so not really in a position to add to the debate until now. I think Leyther eloquently describes the complexity of the issues that comes with this topic. Fundamentally what we know is that there are certain medications that bring tremendous benefit to the majority of people who use them, but for some, they lead to impulsive and compulsive behaviour. This may manifest as a spectrum of behaviours but for some, these lead to shattering consequences on both the person and those around them. All of this needs to be taken into consideration as it influences looking at way forwards.
What seems to be coming across in the posts is the question of responsibilities. What we at Parkinson’s UK are working towards is minimising the risk of impulsive and compulsive behaviour occurring and where it does occur, to minimise the impact of the consequences. The former will only happen through changes in clinical practice – it is now recognised that impulsive and compulsive behaviour is a potential risk, but we cannot guarantee that this is consistently part of the assessment process every person undergoes prior starting medication. Therefore we are focussing on educating all prescribing consultants to accept the incidence of impulsive and compulsive behaviour and on establishing evaluation against known risk factors prior to medication being administered as standard clinical practice. This is in addition to raising awareness of impulsive and compulsive behaviour with a range of professional groups as they may be able to monitor and pick up on changes as well as being in a position to offer support should the behaviour occur (I’m thinking particularly groups like psychologists here).
In terms of minimising the impact where it does occur, I’ve mentioned previously about developing support for those around the person experiencing impulsive and compulsive behaviour (just on a slight tangent here, if you are a carer of someone who has had impulsive and compulsive behaviour, you may be interested in a post made last week on the Research forum requesting volunteers for a new research study on carers’ experiences being run by Dr Eamonn McKeown – the link is http://bit.ly/Wi0Vd4). We are also educating other organisations who offer support for issues such as gambling addictions so that they are fully understanding of this phenomenon and thus able to offer the most appropriate support.
So things are happening which will make a difference in the future. However, and not surprisingly, many are dealing with the impacts of what has gone on before and want this to be acknowledged and addressed in some way. From other posts I’ve made, you will know that engaging legal organisations even for a Q&A session to answer your questions about legal recourse has been difficult – whilst it currently looking like an organisation might be able to do this, it would then lead to thoughts of next steps and, coming back to Leyther’s point, who is responsible for what you have experienced in each of your individual cases. This is crucial as the basis for whatever collective action we as a charitable organisation can legitimately take will lie in what the commonalities there are between your experiences.
I appreciate the honest postings you are all making and I will continue to update you where I can of areas of progress with this multifaceted issue.
Suma
Thank you Suma.
it is encouraging that the educative role of PDUK is going well and that the search for a legal ally continues.
I would still like to know what approaches have been made to the drug companies. After all, they are providing a drug that severely damages about 1 in 4 patients.
please can you let us know what their response is to this challenge ?
Keep up the good work!
GG
it is encouraging that the educative role of PDUK is going well and that the search for a legal ally continues.
I would still like to know what approaches have been made to the drug companies. After all, they are providing a drug that severely damages about 1 in 4 patients.
please can you let us know what their response is to this challenge ?
Keep up the good work!
GG
@Goldengirl
I have skirted around this subject time and time again but maybe it is time for some straight talking.
[u]A Legal Claim for Compensation[/u]
The fact that no one wants to pick up this very hot potato is because there is no confidence that the outcome will be positive. The arguments against an action succeeding are
a/ Is it without question that these drugs CAUSE these problems? You have to PROVE it, not just come up with anecdotal evidence. You will say Y, the manufactures N.
b/ If they do CAUSE the problems, are the warnings given at prescription time enough to protect the manufacturers from being taken to court? It is without question that these drugs do good to some. You will say N, the manufacturers Y.
c/ Is the use of DAs recommended by the NICE authorities? Y
d/ Do individual Neurologist want to HELP their patients and staay on the right side of the law and ethics? You N, them Y.
e/ Do you think that it might be possible that there is at least one person amongst the group affected who is using this action to cover up their own misbehaviour? You will say N, who people you are suing will say Y.
f/ Should P UK pay for this. You will say Y, I say N, but it's not my choice. I'm just a poor man with PD suffering in silence.
And there's more....
So, I say this. Stop asking P UK to do this for you until you can come up with a winnable legal case. Because you think it isn't fair doesn't make it so.
I do not want any time or money spent by PUK on the compensation case until the chances of winning the case are good. I want them to spend their charitably-given funds on research and education. At the moment all I see is anecdotes and stories
I have nothing to gain from this, except that one day, before I die, PUK and it's researchers come up with a cure for this horrible disease that is ruining MY life.
I despair!
I have skirted around this subject time and time again but maybe it is time for some straight talking.
[u]A Legal Claim for Compensation[/u]
The fact that no one wants to pick up this very hot potato is because there is no confidence that the outcome will be positive. The arguments against an action succeeding are
a/ Is it without question that these drugs CAUSE these problems? You have to PROVE it, not just come up with anecdotal evidence. You will say Y, the manufactures N.
b/ If they do CAUSE the problems, are the warnings given at prescription time enough to protect the manufacturers from being taken to court? It is without question that these drugs do good to some. You will say N, the manufacturers Y.
c/ Is the use of DAs recommended by the NICE authorities? Y
d/ Do individual Neurologist want to HELP their patients and staay on the right side of the law and ethics? You N, them Y.
e/ Do you think that it might be possible that there is at least one person amongst the group affected who is using this action to cover up their own misbehaviour? You will say N, who people you are suing will say Y.
f/ Should P UK pay for this. You will say Y, I say N, but it's not my choice. I'm just a poor man with PD suffering in silence.
And there's more....
So, I say this. Stop asking P UK to do this for you until you can come up with a winnable legal case. Because you think it isn't fair doesn't make it so.
I do not want any time or money spent by PUK on the compensation case until the chances of winning the case are good. I want them to spend their charitably-given funds on research and education. At the moment all I see is anecdotes and stories
I have nothing to gain from this, except that one day, before I die, PUK and it's researchers come up with a cure for this horrible disease that is ruining MY life.
I despair!
I understand Spam that this is not a problem that affects you.
We provide the proof again and again by posting links to reputable research showing that the drug causes these compulsions.
Many court cases have been fought and won in America, Canada,France etc and compensation awarded.
The UK stands almost alone in refusing to face up to the bullying drug companies.You are free to ask PDUK to work in a way that helps you. Surely you can allow those with drug-ruined lives to ask for help also?
The fact that they have a unit set up to tackle this very problem shows that they accept the damage is caused by the DAs. Read the papers put out by this group.
We have to agree to differ in the way we view this situation, those of us embroiled in it and those lucky enough to have only the effects of Parkinson's to deal with.
GG
We provide the proof again and again by posting links to reputable research showing that the drug causes these compulsions.
Many court cases have been fought and won in America, Canada,France etc and compensation awarded.
The UK stands almost alone in refusing to face up to the bullying drug companies.You are free to ask PDUK to work in a way that helps you. Surely you can allow those with drug-ruined lives to ask for help also?
The fact that they have a unit set up to tackle this very problem shows that they accept the damage is caused by the DAs. Read the papers put out by this group.
We have to agree to differ in the way we view this situation, those of us embroiled in it and those lucky enough to have only the effects of Parkinson's to deal with.
GG