Hi Bob,
I understand your position absolutely, and agree that we are notable to do much at all. Your picture of the situation in Spain shows exactly what needs to be done. Nevertheless it could not have happened that way if not for the support of the government, and for this reason I mentioned scaremongering.

To explain, the majority of PD patients are not informed or even engaged, and are passive recipients of treatment. We do not only represent the vocal minority, by default we also represent the majority, and their fears can be manipulated in many different ways. This thread is a very important discussion, it represents not only the information that we have accumulated on this, but also our feelings, and reactions to it. I am sure that it has in some way been scrutinized, it registers high on google searches. In some ways it is vulnerable to the fact that there are only a few of us keeping an eye on how this progresses - the way in which we discuss it matters.

Here in the UK we need to make our decision makers aware that this is happening, to open the discussion, there are many vulnerable people here. Our system is great for keeping the majority of people treated for the majority of conditions, the price we pay is that we do not have a consumer voice, and most people do not question the things that are done in their name. Most people will put side effects they experience from medication changes down to being part of their PD, or think it is progression, and some will spend many months adjusting. Or they could stop taking the substitute, they are not educated to know that they should not, that they could become very unwell....... This is a hidden layer of suffering that should not occur, especially among the very elderly and infirm, and I for one think that the politicians in charge of down-pricing agendas need to realize that this is not cost-efficient, it is not economic, and that they should have more of a handle on the strategies that drug companies are using across the EU region. And that there are patient groups who are looking at this........ and that further more it is something that is being tried on globally, to see how far it can be pushed....... how compliant different populations are.

We are on the same page, we want the same things, I would hate to think that our words might cause patients a sense of panic, it is not what is needed, for instance stockpiling sinemet in countries where it is freely available seems to be wholly unnecessary, and you report that there is a glut in India. The internet seems to bear this out, so why the regulatory problems, it needs to become visible......What is needed is more awareness of the games that are being played with our lives.......


Lindy