Advertising and "Getting it out there"

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Not really sure where to post this but maybe someone could bump this to wherever is meant to be please?

​During the month of December I looked in all the card shops,supermarkets,charity shops etc to find Christmas cards supporting PD charity...I unfortunately could find none anywhere.Today I have just checked all our own cards sent to us... Lots are sold for various charities supporting them. The ones here are supporting at least 10 charities from animals,children,cancer and others along the line......my question is  Why arent PDUK using this way to advertise the charity and get more income in? When Parkinsons awareness week was on last year the area where I live(and I live in a city not a tiny village) had nothing to raise awareness of people with PD.....I know that cards are available on line to purchase but surely the people who go on line to search charities are usually the ones with the actual disease? I feel that PDUK are missing an enormous advertising area for the public.........I feel that we are overlooked in a lot of areas of advertising....hence we come across lots of ignorance around people not affected by the disease???

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I do agree,Alzheimer's and dementia ,cancer research are some that get a much higher profile .I always purchase charity Christmas cards from a church in town that has a variety of charities represented ,Just found only 4 packs for PD..

It is sad that after all these years there is such little public awareness of PD.

Suzi2

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Hi Suzi2 - hope you had a lovely christmas and hope you have a good new year. Thank you for lovely the Christmas card. I'm sorry I would have sent you one but unfortunately mislaid the diary I had the names and addresses in I used in York, but great news I have found it and will write to you.

 Sheila x

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Hi

I agree there seems to be very little information about PD generally in the public domain. A lot of people have never even heard of it.

Of those that have heard of it, unless they have experience of it via PWP friend or family member, they usually know next to nothing about it.

In my experience most think. PD is just "a bit of shaking". They don't know it's incurable and progressive and comes with a whole load of other "stuff". I should know, I used to be one of them until I got PD!

How do you begin to explain what doesn't show when outwardly you look ok? The sleepless, broken nights, waves of fatigue, anxiety, stiffness, funny wobble feelings, stupidly slow movements or inability to get out of the way at times. It all sounds so vague until you experience it. l mean - "if you're tired enough you'll sleep won't you?" Er no

Loss of sense of smell - ha ha, minor detail.

Constipation - you can get pills for that..... And so on

Sorry for the rant, but sometimes....

My son in laws father has had a form of MND for 30 years and is in a poor way now. Which makes me feel a fraud for moaning about my little lot, especially to family. So thanks for the opportunity to post here and get it off my chest and thanks for reading this. Tomorrow will be a better day. Daffy

 

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If you read the small print on the back of packs of charity Christmas Cards very little actually goes to the charity/charities that the sale purports to support.; 5%  or less on some cases.

PUK have their cards, OK, only available via their website or  the P magazine. However, I'm sure by going down this road, PUK gain more than a measly profit margin than would be gained by stocking many outlets with cards that did not sell.

Maybe Admin can give some insight as to why PUK cardsare not widely available though I have no grievance with their present set up.

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You don't even see leaflets in the GP surgeries or in hospital waiting room about PD, I wonder why??  Is it not an important disease?? That's why no one knows very little about it.

In fact I even took some leaflets to our GP surgery to ask them  to show them, the receptionist said she would have to ask permission, and to this day I have not seen them on show!

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Hi shefinn

You have a good point there. There's a rack full of leaflets at our Doctor's surgery about pretty much any condition you can think of - but not a single one on Parkinson's.

When I was first diagnosed I felt fairly confident because my own GP was very knowledgeable but he retired within a couple of months. When I asked reception if any other GP in the practice had experience in Parkinson's Disease there was an awkward silence - they hadn't a clue what I was on about. It's a bit worrying.

It would be helpful if there was just a little more readily available info out there for the general public. I wonder if Parkinson's uk has considered this issue. I for one would be happy to approach local GPs and pharmacies to ask if they would display leaflets if they were any but I don't know if there are

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When my PWP was finally diagnoised after mis diagnosis for 4+years..... Frozen shoulder,trapped nerve,arthritis,age the list goes on...until the tremor became apparant and I went to see GP with him and insisted he was refered to a consultant (who told him as soon as he saw him it was PD it was so apparant)....when we went back to see our GP he said "I am sorry I probably misdiagnoised you for a long time. As you are only 58 I thought you were too young for PD...I actually dont know much about PD you are better off talking to the consultant for info ".......I realise that even with an earlier diagnosis nothing would have changed but it doesnt instill a great deal of faith in the GP...our surgery has no GP who knows more than the "text book" information about PD...We still see and hear so much ignorance about PD and hear "its only a bit of shaking isnt it"......

Sad times......

9

Hi Babesbrown,

We understand your frustration. Unfortunately, Parkinson's UK does not have any shops.

There is one exception, QEF sell 1959 group cards in some of their shops. We are a member charity and our name appears on the back of the cards along with the other 22 member charities (QEF are also members of the 1959 group).

Our logo also appears on the back of Medici and Ling multi charity cards, these cards are sold in non-chain greetings card shops, gift shops and some department stores nationwide.

We are a member of Cards for Good Causes and sell a range of Parkinson's UK cards in the 340 outlets throughout the UK. The 1959 cards described above are sold in all Cards For Good Causes pop up shops.

We are a guest charity for the Midland Christmas card shops, there are three shops who stock our cards.

Our cards are also available to order via our catalogue and online shop.

Some Parkinson's UK groups purchase our Christmas cards to sell at group meetings, Christmas fairs, school fetes and Christmas Markets.

It would be lovely for a department store, supermarket or high street chain to stock our cards, competition is steep and inclusion is usually part of a charity of the year agreement.

Some chains produce their own charity Christmas cards and invite a small number of charities to be part of their charity Christmas card scheme. The percentage donated to charity on these cards is very small and must be divided amongst all the charities whose logo appears on the cards, in reality just pence per pack.

We’re also aware of the lack of awareness and understanding of Parkinson’s compared to some of the more prominent conditions such as Cancer, Alzheimer’s plus children and animal causes. It’s something we’re doing our best to combat and we’re investing more into our marketing this year to try and educate people on what Parkinson’s is and the complexities around it. In December, we launched the first of our ‘This is Parkinson’s series of campaigns addressing the symptoms (including hidden ones) and lifestyle changes that can come with the condition which will continue throughout the year. We’re committed to doing more, higher impact activity to help educate and change attitudes.

In reference to the GP surgeries, we unfortunately don’t have the resources to get our leaflets into every GP surgery. We are also reviewing our approach to this as we know how important it is to have information available for those who need it. 

Apologies for the lengthy response, however, I do hope the above information provides more context to your concerns.

All the best.

Many thanks,

Reah

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Local PSN's and local group members can put posters in to local surgeries, we have done it locally.

GP's are not experts on every condition, our now retired GP told us that after he referred us to an MS specialist first as that was what he thought was the problem.They see very few cases of Parkinson's.

Our local branch uses every opportunity to promote awareness of Parkinson's via fundraising  events which include the local community, monthly meetings where outside providers come in, ( we get many more contacts from this alone), and using the local press to promote our fundraising events and what is happening at our monthly meetings.

You cannot sit back and hope that it just happens, you have to be proactive if you want IT, (awareness), out there!

Reah, I remember some years ago participating in such an exercise to get information out there to GP's surgeries; maybe before your time on here?

If  every member of this forum who was able to, got out there and distributed, leaflets, posters and information to just a few surgeries in their area, it would make a difference.