Q&A: Ask Steve


#1

Hi all,

Next Thursday 18 September Steve Ford, our chief executive will answer your questions in a live Q&A on our website. 

You can ask questions about any aspect of Parkinson's UK's work including our ambitious new plans for 2015-2019.

Get more information and submit your question in advance at www.parkinsons.org.uk/asksteve

Ezinda

 


#2

hi ezinda

where are the plans for 2015-19?


#3

Hi T, try http://www.parkinsons.org.uk/content/transforming-future

Best

Semele


#4

thanks semele

though i have to say what i found there is a  load of self-serving *******. where is a detailed plan for finding a ******* cure? thats what i want to see!  

wishy washy bloody nonsense in my unhumble opinion.


#5

turnip

Sorry I missed your question yesterday. If you would like to have a chat with the research team to get more details, you know how to get in touch. If not, let me know and I'll help you do that. 

While criticism is fine here, as always, we ask you to please not use profanity like this on the forum. 

Ezinda


#6

I humbly apologise, not for the first time. I was upset because 'the plan' looks exactly the same as it was 5 years ago and as it will look in 5 years time. idealy the plan should be that you are all redundant n 5 years not that everything is merrily carrying on for year after year. A plan has measurable objectives and an expected delivery date. This is a high level strategy - it is not a plan.


#7

I know research depends on funding but I wonder how many people voted to give to  banks 1.2 trillion pounds as a bailout so that they could go on paying themselves millions in bonuses and leave charities such as PDUK  to pass round a begging bowl?

http://www.theguardian.com/news/datablog/2011/nov/12/bank-bailouts-uk-credit-crunch

GG


#8

Hi Turnip

Thanks for your comments. I do understand your frustration.

As you know, research is not a linear process and sadly there is no roadmap that we can follow to find a cure. We're investigating the unknown, so there will be surprises (hopefully good ones), bumps ... and probably some dead ends. So that means our plans need to be flexible. And we also know that while we have a really important role to play, we can't do this all by ourselves. So we need to mobilise the whole research community to address the challenges and opportunities that come up along the way.

And that's really the key difference in how we want to work over the next 5 years. We're going to be doing everything we can to bring researchers together - not only from around the world but also from across different disciplines (industry, government, academic) - because we believe that collaboration is the most powerful thing we can do to speed up the search for a cure.

I realise that what I'm saying may still sound like lots of words but I'd be extremely happy to discuss this further by phone or by email.

If you'd like to contact me directly my email address is cbale@parkinsons.org.uk.

Very best wishes

Claire


#9

dear clare

 

everything you say is , of course, correct sensible and true.. Ironically the same is true in my own job.

but the very idea of 2019 is extremely depressing. i think i was diagnosed in 2008. that wlll be 11 years with no new product. 

my main problem  is the feeling of the organisatin happily carrying on year afer year while the individuals perish.

 


#10

Hi Turnip

Well, depends how you look at it really. You could easily go in for conspiracy theories - PUK getting into bed with Big Pharma, BPh not wanting a cure for PD coz they'd lose a captive market, PUK not wanting a cure coz all the staff would lose their jobs (or, even simpler, just coz the only point of an organisation is to protect itself). I run a tiny charity myself and I know how easy it is to get into management-speak and forget your users.

Or - you could say, PUK making the best collaborations, stripping out the excesses of the market place, BPh desperately looking for a cure for PD coz their existing drugs are all off-patent and make them nothing at all and a cure would be huger than huge (look at how productive we'd all be), PUK doing its best coz you don't go to work for a charity for the pay, believe me, or the kudos (getting beaten up by government ministers is no joke), but mostly coz you hope you can make a difference to the human condition (usually against the odds).

But that pesky PD, (?like similar conditions) is just not that straightforward. Actually (and I'm a physicist not a biologist) it seems as complex as cancer(s) - and without cancer-charities' money progress is slower than we'd like.

So what do we do, T? I think, let's hold PUK's toes to the flames: if we're not complacent, they won't be complacent. But let's ask what we can do for . . . etc etc. It's my disease, I want to be in charge of it.

All the best

Semele


#11

turnip

I can ask Claire to get back to you on this on Monday. Realising that you're far away, I can have her or Joe, our head of planning to give you a ring next week? Would that work? If so, send me your details by personal message or at forum@parkinsons.org.uk.

Hope you're well

Ezinda


#12

No apology needed Turnip; as you say, it's the same old words and probably will be for  the foreseeable future which, for many of us, will be too late to  enjoy a cure, despite the hundreds of thousand of pounds spent annually on research projects.

Perhaps the thousand of pounds that our branch sends each year for research would be better spent on making life better for members of our branch.

Disillusioned? You bet I am. OH was diagnosed over 16 years ago. However, I did not join this forum until 2007 and nothing has changed, progressed or holds out any hope any more than it  did back then.


#13

Dear Ezinda

please dont do anything on my account. I must have been very depressed. But heading for china next week fulll  of optimism. PUK is great, alls well. I know you are all doing your best. 

cheers 


#14

Hi, Turnip,

First of all I would like to wish you good luck in China, as you recently  explained what the purpose of your imminent visit there is. I do hope you will find happiness.

Secondly , I don't blame you for venting your frustrations at the lack of much progress in finding a cure for this hateful disease. We all feel the same, I am sure.

The way I see it, all the various organisations seem to work in isolation on different leads, instead of making a concerted effort to find a cure. For example, PUK could have asked to be involved in the vaccine trials, which, in my estimation, give the biggest hope to sufferers. The vaccine is also non-invasive. Unfortunately, we have to wait 6 to 8 years before we can hope to be offered it, which would be too late for some of us.

However, Research seem to be talking about working together with other bodies towards a common goal in the near future. Let's hope so.

Regards


#15

I know I bang on about money but the Tories managed to find 1.162 Trillion pounds to bail the banks  out and let them carry on paying themselves millions of pounds in bonuses...

The banks matter...patients with progressive conditions don't. So why fund research?

Let them rattle collecting boxes.

The money is there for priorities.

We aren't a priority.

Simple isn't it?

GG