I was delighted in 2009 to join the (Birmingham University) PD Med study of medication with 2100 other PD sufferers. As someone with much experience in the use of market research I realised the data supplied would clearly provide deep insight into many aspects of the use or neglect of available drugs. I actually wrote to them in 2010 and expressed a hope they would have a presence at WorldCongress Glasgow in December. Alas it was not to be.
Recently we all received a circular advising that they are having a June 2011 debriefing for nursing and consultant staffers involved thro their patients, with a general release in Shanghai in December 2011.
However when I read in the Telegraph of the so called Red lists of excluded drugs for Parkinsons' Disease it was not difficult to envisage that the PD Med profile of drugs in use will reflect this censorship of treatment
Worse still, it must undermine the brilliant work our group has facilitated because it seems that in many Primary Trusts new drugs are denied to us as a matter of course.
1. It would make many a PD patient more relaxed if they knew the results of this study at the earliest opportunity
2. I hope someone from Parkinson UK is attending the professionals debriefing in June this year
3. I believe it is unacceptable to delay general release of the initial findings for a further six months.
4. Now that it is the public domain, a full list of Red list drugs should be captured by the P UK and made available to all sufferers.