This post has been edited by the forum moderator for clarification.
We know that many of you are upset about how the GDNF trial, and the decisions made by Pfizer, were represented in the BBC documentary. We wanted to answer the questions that some of you have raised, and share how we have provided information on the trial over the past few years.
Parkinson’s UK worked with the production company (commissioned by the BBC to create the documentary) over six years, by providing background information and expert comment throughout the process and to help inform what was ultimately created.
We wanted to ensure that any portrayal of Parkinson’s and the GDNF trial was accurate, balanced and fair, as our primary concern was the needs of people with Parkinson’s. We considered the questions and concerns that the documentary might raise throughout the process of providing support and advice during the filming process. For example, as soon as we became aware of the title of the documentary we strongly voiced our concerns that it may raise false hope for people affected by Parkinson’s.
Ultimately how the documentary film footage was edited and presented, and the title chosen, was a decision made by the BBC.
We constantly strive to provide accurate information about the latest Parkinson’s research as quickly and as widely as possible, and anything we develop is done in partnership with people with Parkinson’s.
In the case of the GDNF trial, we’ve been sharing updates and developments over a number of years. We shared the trial results, and what they mean in terms of the potential of GDNF to treat Parkinson’s as soon as they were published last week. We also commented on the news that Pfizer had pulled out of neuroscience research when it was announced last January. The announcement was also covered by the media at the time and in case it’s of interest you can see how the Daily Mail covered the story.
We feel that the programmes are generally well balanced and provide a real, and powerful, insight into both the condition itself and this groundbreaking study. We’ve seen a huge response to the documentary, with positive feedback about the courage of the participants and the skill and commitment of the team. It’s raised a lot of interest in Parkinson’s and the future of GDNF, with many people donating to support our work to find better treatments and a cure. We’ll leave no stone unturned in our search.
If you’d like to share any feedback about the documentary please contact the BBC via the BBC’s website at www.bbc.co.uk/complaints, 03700 100 222 or write to BBC Complaints, PO Box 1922, Darlington, DL3 0UR.
And if you’d like to find out more about the GDNF trial you’ll find lots of information available on our website.
Many thanks for sharing your feedback and concerns.
The Parkinson’s UK moderation team.