Thoughts on the BBC programme for GDNF?


#1

Thoughts on the BBC programme on GDNF?

I feel compelled to speak out about the BBC programme.

I have cried many times throughout the two episodes. I commend the courage of the people who entered the trial and of course Parkinsons should be highlighted and the general public should be made more aware about the disease as we head towards a cure.

However…

I find it appalling that they may have given hope to thousands of people. They should have said from the start that it had failed, rather than treat it like a thriller and show it as a 2 part serial and make people wait a week for the results. Why did Pfizer not tell people the trial had failed?

My mum has had Parkinsons for 15 years and after the first programme she wanted to have the surgery. This seems like such a cruel way to treat the 145,000 people who have Parkinsons.


#2

I thought that I was pretty up to speed on this, having read the research results before the programme, but it came as a nasty shock that Pfizer had pulled out. Maybe it was there and I just didn’t want to see… I can see the whole thing made exiting TV, but for those of us who live with PD it’s not a kind way of reporting such a disappointment.


#3

I completely agree. I was appalled by the way that they aired the programme, giving false hope and treating it like a thriller when it impacts so many people with Parkinsons and their families. I have complained to the BBC.


#4

HavanaS,
I totally agree with your comment in relation to tonights programme. I too cried through both programmes as did find it hard to watch at times. I was inclined to believe that there was going to be fantastic news on the results of the trial this week and realy commend all those volunteers who took part. Whatever way the programme was put together it was a bit of a rollercoaster towards the end. One minute I felt angry that they would wait so long in the programme to portray what I was not expecting that the the results were not what I thought they were expecting themselves. As a person who has been only diagnosed in the last year, I too had hopes, like many others and thought it was not the way to go in the way the programme was put together. In a way it was false hope !


#5

I totally agree that it would of been better to mention the trial as unsuccessful in the 1st episode. I watched last week and i felt excited and hopeful. However after tonights episode i could cry!


#6

I am not totally disillusioned however as I do believe there is some progress being made in all the research into a Parkinsons cure. And that we do all have to focus on just that and be positive as best we can. Its not easy, especially when we probably thought it was getting so close. Awareness of Parkinsons is paramount in the community to get as much support as we can to contribute to working towards a cure. Big admiration to all those fighting on our behalf for a cure.


#7

Absolute bollocks
Whoever made the programme and whoever gave the go ahead to air it should be ashamed of themselves.
Hope is all we Parkinsons sufferers have.
That garbage will have destroyed the hopes of thousands of people.


#8

Heartbreaking to watch and then to learn that it was years of research and millions of pounds to trial…to end up with nothing…those people who went through the operations,given hope and then its all been snatched away…PD is NOT nice and is a horrible disease but to basically "dramatise it "to get TV viewers is totally appalling!!! To air it over 2 weeks to keep people hanging on and giving false hope is total s**t…surely Parkinsons UK must have know the outcome of the trial…if so why didn’t they try to stop the programme rather than let us all be given hope???

The chances of a cure in my time is obviously not within reach, after all this trial took YEARS to research and fail…


#9

Absolutely. I support everything you have said. The fact that no-one said that the trial had failed up front and for it to be dramatised over 2 weeks is cruel. It blows my mind. I was so angry about it. I would have thought there would be a statement before the programme aired by Parkinsons, or Pfizer or even the BBC to explain that the trial hadn’t worked rather than give people false hope. Why on earth didn’t they at least show it as a one part programme?!!


#10

Typical BBC. reporting. Some of these documentaries are getting as bad as the so called entertainment programs. Your kept waiting and waiting for the answer. Then, when it’s at long last revealed, it’s bit of a disappointment. It’s a bit of a risk with any medication what ever it may be for. Why not give it to the people that will gain the most from GDNF ,and keep a close watch on them to make sure it’s working as it should. It all comes down to money in the end. Something the NHS has very little to spare , but I think a good investment for the future…Common sense really.:no_good_man:


#11

I thought it was very interesting, yes it was a shame it didn’t go as planned but i watched it and understood it did work for the one’s that took gdnf from the start ie the two lady’s gardener and the retired man who the kitchen cupboard fell on his head also there was improvement in the man that passed away. The only thing i found cruel was pharmaceutical company taking away the funding this is why they need to carry on for a 3rd trial in memory Tom he had so so much belief in it ,how can the trials not go on all the man hour’s and skill of the bristol neurological brain centre big heads up for professor Gill & Alan whone and staff, they have got down to under 5hrs doing deep brain stimulation under General annesthic. Surely its good too see any bebind the scene wherd all the money is going for research. The only people who should be shamed is Pfeiffer, i can’t see why the couldn’t have a batch gdnf in the fridge for the people who were getting good out come still.Bet there be the first one’s in the queue to fund it if the dopamine shows more growth. By the way these people who were on the trials still can have dbs if suitable.


#12

I have just watched what appears to have been the second part of these two programs, by chance. It was fascinating. I have no-one in the family or friends with this, but my companion has a friend suffering from this in Italy, & that was what made me stop to watch.
Perhaps I am more ‘detached’ as not directly involved, but I found it was very sensitively & thoroughly well done. I was hanging on the edge of my chair with hope until the end, as it should have been. That hope was there to the end, with everyone; people in the trial, families, Medical staff, researchers, etc., That was plain to see. I felt the immense disappointment at that news of the results myself.
It has made me so want to help this research continue & prove the amazing effects it obviously had with most of those undergoing the trial…& allow them to still benefit & others.
Surely a donation campaign can raise this amount with not too much difficulty. This is not just a UK ‘problem’…it is world wide.
How can we best help, in a big way & quickly, to allow this research to continue ?


#13

Thanks for the response. I see that you have joined up since the programme aired and that this is your first post. That is encouraging then…if you have no family or friends involved and you still decided to join a forum on the Parkinsons forum as a direct result of seeing the programme?

Of course, it is important for people to speak about Parkinsons widely and to start the discussion. I entirely agree. My post was about the way the airing of the programme was handled and how it affects people directly involved and how heartbreaking it can be for them.

Fundraising needs to continue for sure. And yes- of course- on a global basis. Anything that hightlights the cause is a good thing- as long as it is done in the right way.


#14

The decision to structure the programme as a drama would have increased the number of viewers substantially, which I think is more important than the emotional discomfort of us PwP’s and results in more coverage in the media. I think we should now expect some very positive developments. I hope that the treatment of the volunteers could be continued - from a humanitarian, scientific and ethical standpoint. We should also now see an opportunity to raise funds (PUK is very sucessful at raising funds) both in the UK and abroad and support a continuing programme (stage 3) of testing. Pfizer may very well be open to an offer to buy out any licences, which would avoid the cost of the treatment skyrocketing.
Being diagnosed just over a year ago this development continues to give me hope. Lets get behind the project, looks like the GDNF works and the delivery mechanism exists so all the difficult work has been done. How about PUK setting up a project to get this finished???


#15

Hi everyone,

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.

Best wishes,
The Parkinson’s UK moderation team.


#16

I don’t let my Parkinson’s get to me, I always try to think and be positive, but that program has left me feeling like I have had a kick in the guts. I can’t stop thinking about those poor volunteers, it’s like a form of abuse. I am too angry to write any more.


#17

I have had Parkinson’s for 12yrs and had deep brain stimulation for 7yrs my operation was doneat frenchay hospital now southmead by professor Steven Gill and neurologist Alan Whone also my Parkinson’s movement specialist nurse Caroline Robbins and staff with out these outstanding people i would not want to go on. on.Research is so important i can’t imagine the presure & stress these people are under! what would we do without pduk and all the people who work to find a cure.Also everyone on this forum for there support and help to are questions. One day we will win .:hugs:


#18

‘The marjoyity of people with Parkinson’s did not know about the GDNF trail. So we had email after email from Parkinson’s UK either directly or indirectly telling us in not so many words about the great cure. But alas this was not to this time.

Was this a great marketing ploy to be some sort of fundraising documentary for Parkinson’s UK. In hindsight Parkinson’s UK should have made the the results know to members in simple terms before the program was aired. As I have read the links that was in Parkinson’s UK post and those links were not clear.


#19

I think that anything that raises public awareness of Parkinson’s can only be for the good.


#20

I too watched this programme and was left brokenhearted at the outcome. However, I still have hope that the money will be raised for phase three of the trial. It is obvious that the drug works. If you don’t have hope, you gave nothing. My lovely husband was diagnosed 20 years ago this month at the age of 47. He now also has Parkinsons Dementia. Whilst Gdnf may not help him, it may help millions of others. In addition the programme has done a lot to raise awareness of this nasty disease, which surely can only be a good thing. Never give up hope.