Does any one else wonder as I do, why there is no TV campaign with reference to Parkinsons , similar to the campaigns for Cancer research and dementia research ?
If i wasn't living with it, i'd hardly know there is such a illness, not just on TV radio too listening too the local radio cancer, dementia often comes up as a subject? but never Pd, Has a tv program ever been made on it??, apart from the death of Robin williams for a few fleeting moments. Not only that I went too an appointment with the PD Nurse just the other day, it is the same place(clinic B) i always go too as i do too see the Neuro, not a mention of it while sitting there, waiting in a poster or leaflet, the same when i go to my Gp's practice.
You're absolutely right – I hadn't thought about GP surgery or in hospitals ..... Perhaps Parkinson's UK could offer insight into why Parkinsons isn't out there with the rest of conditions that are being highlighted
Hi moonandstars and sea angler,
Thank you very much for pointing this out. I've passed your observations on to our advisers so they can look into this and get back to you when they're back in the office next week.
My local parkinsons group ordered some pamphlets from parkinsons head office to put in the local doctors surgeries, but they seem to disappear after a while. Have they not got the room to display them or is it a taboo subject/illness??
How many times has our branch, and other branches, put posters etc. and information, on local branch contacts into GP surgeries??
Admin, this is NoT a first to be explored!!!!
Nope my gp surgery doesn't have anything on Parkinson's either ...but they DO have info on dementia , Alzheimer's, cancer etc ...... why????????
How on earth is the general public ever have an understanding of this disease!
We may do TV advertising in the future, but for now do not have sufficient funds allocated to this area of our work so are focussing our awareness raising efforts on more targeted campaigns such as Parkinson’s Awareness Week. Over the last few years, we were able to achieve fantastic results with a budget of just 0.3% of what a TV advertising campaign would cost.
As you know, Parkinson's is so complex it's almost impossible to explain quickly and easily. That’s why in Parkinson’s Awareness Week 2014, we decided to make a short film explaining very simply: there’s much more to Parkinson’s than you might think, which had 64,739 views.
We also created one for 2015 to tackle misconceptions about the condition: ‘Up your friendly’ which had nearly 50,000 views. We kept to a small budget and cut costs by doing as much as possible in-house and using volunteers as the cast.
In terms of other TV opportunities, our Press team manage our approach to this – we’ve been on the news, breakfast chat shows and Newsnight.
I hope that helps answer your question about TV campaigns, if you'd like any more information please do let us know.
in the new year there will be a documentary on deep brain stimulation, Bristol brain centre on itv its going to be called the mirical .
Awareness, Fantastic results??
I'm not so sure,
I Know we are but sufferers & Parkinsons uk is obviously happy with it
But, Nearly all the People i encounter think Parkinsons is something comparable too the common cold, a few pills & hallelujah we're cured, I saw both of those campaigns but I only saw them via this Page and Your face book page, i suspect a large% of those 64,739 are sufferers?.
I'll give you that Parkinsons has had some minor media attention recently with the lady who sniffs out sufferers on sky tv news a novelty item too them & in the daily fail billy connolly (celebrity sufferer) writing letters to his grandchildren.
I agree totally with sea angler .... 64,000 ....50,000 .....I dont mean to sound un grateful but that doesn't sound a lot to me . Think of the millions and millions of people that would be targeted by a tv campaign .....and one week out of 52 raising awareness doesn't seem enough...... i agree again, most probably a large percentage of people seeing that site were by people already suffering with pd or their carers.
Think of all the millions of pounds that could be raised from a targeted campaign and the number of people within made aware of this horrible disease.
Given PD is the second most common neurological disease after Alzhemers, you would think it would have a higher profile. Ideally you would have a long running character in a soap or similar but even then they would have to have contact with other PWP's or else it would be misleading as the disease varies so much from person to person. The Archers comes to mind as they have dealt very well with, e.g. Alzheimers and are now doing a marvellous job tracking how a controlling partner (usually male) gradually gets control of his other half.
I can't tell you how silly I thought the "up your friendly" slogan was - trivialised the subject. and it wasn't the first silly slogan. Smacks of the amateur. and as has now been confirmed above a "do it on the cheap" approach..
The problem is how to convey the day to day reality without frightening people. As far as final stage PD, I certainly have my head firmly in the sand..
Neuros Office - my experience also is of no sign that a PD neuro is around - not a PD leaflet or anything . I found a whole batch of PD leaflets in the Rheumy department however. so where do the other leaflets go? Quite likely they are dumped?
My Patients Participation Group now keeps on top of the avalanche of leaflets on every conceivable condditiion in the GP surgery. It is a real job making sure everything is sorted and kept up to date but now if its is there you can see it... I take it on myself to surreptitiously organise leaflets wherever I go inn the NHS and point out the out of date items. which are obscuring important information
End of disorganised rant...5 am better go back to bed
Eileen Patricia once again I agree with a fellow PD sufferer, I found the up your friendly campaign very insulting !
It is really interesting to hear your thoughts on Parkinson's Awareness Week and I will pass them on to the marketing team to consider for future years.
I HAVE JUST SPENT HALF AN HOUR TYPING UP A SUGGESTION TO PUK ONLY FOR MY POST TO VANISH AGAIN I AM GETTING REALLY FED UP WITH THIS.
STRESS IS THE WORST THING FOR US WHEN WILL ALL THESE PROBLEMS STOP HAPPENING!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Peed OFF NOW AND THIS IS AS POLITE AS IT GETs.
AND TO TOP IT OFF THE SITE IS NOT LETTING ME ACESS MY PHOTO SO I CAN CORRECT IT!!!!!!!!!!!!!!!!!!!!!!!!!!
I don't know what it means....up your friendly what?
I'm really sorry to hear that your posts are vanishing again. I understand how frustrating this can be when you've spent ages typing something.
You have possibly seen this already but there is a section here about issues with the forum https://www.parkinsons.org.uk/node/65110 but the main reasons we can find for vanishing posts are pressing the backspace key when outside of the comment box area or clicking more than once on the post button - not sure if that helps at all?
And just checking, in terms of your photo, are you able to access your account settings?
i totally agree that parkinsons should have more publicity.
I think this years campaign was a wrong choice. I was actually asked to 'audition' for the part of the lady on the bus via a Skype interview. After a general chat about the campaign, the interviewer mentioned the fact that it wasn't obvious I had Parkinson's. I think this is the biggest problem. I don't need someone to jump up and offer me a seat, nor do I need people fussing over me. I just would like people to understand, that sometimes, not always, it's a struggle to get out of bed, a struggle to walk, I can lack motivation, sometimes my thought process isn't as quick as I'd like it to be, sometimes I need to have a nap, sometimes I can't sleep at night, sometimes I get a tremor. I no longer smell things, I sometimes drop things. I consider myself lucky, after 4 years, I can still pass as 'normal', but I'm not, I have Parkinsons, and I think this needs to be part of the campaign. How I look, isn't necessarily a reflection of what's going on. Until that barrier of misconception is crossed, people will never be aware.
i hope my contribution to this topic makes sense.
Makes perfect sense, Ali.
Similar to the situation where I get a free carer's ticket at the cinema, my husband strides confidently along at the side of me accompanied by black looks and then struggles to leave after 2 hours sitting down, losing half his pills in the dark trying to count them out and dropping his bottle of water, trying to find his stick, freezing and then managing a spasmodic shuffle whilst having a panic attack.
And I still don't understand " up your friendly..."what? Although I have been heard to mutter "up yours" when faced with someone berating us for holding up the queue to leave as I try to get my husband moving again.