Keeping people talking about Parkinson's, Survey for People with Parkinson’s

Hello everyone, :wave:

People with Parkinson’s frequently tell us that a lack of understanding from the public is one of the biggest challenges they face.

We want to change this perception, get Parkinson’s understood and be a part of everyday conversations. This survey gives you the opportunity to tell us more about how Parkinson’s affects your life, so we can use your experiences to highlight its true challenges in the media.

To do this, we’re conducting a survey of people living with Parkinson’s and need as many people as possible to participate.

The survey is being managed on behalf of Parkinson’s UK by Opinium, an independent research agency and it takes about 15-20 minutes, but if there are any questions you don’t feel comfortable answering, just click “next” to move on. All responses are confidential and anonymous.

Over to you

Please encourage as many people as you can to take the survey, it can be found online here: or you can contact [email protected] for a paper copy.

Hi, I’ve tried to fill in the survey but can’t get any further than answering the question about my nearest city. Tried several times but touching the “next” button takes me back to Parkinsons UK homepage.

Hi @Mitch1,

I’m sorry to hear this - I’ll pass this onto my colleague and will get to you on this.

Best wishes,


Same problem here.

Hi @RobbieB,

I’m sorry that you’re also having trouble to complete the survey. We will look into it and get back to you.

Thank you very much for taking the time to take part in the survey and let us know about the issue.

Best wishes,
Mara - Moderation Team

Just tried to fill in ended up on Parkinson’s UK
home page after been asked how far you are from a city. What’s the point of asking how far you are from major cities when you are in Cumbria. 75 miles from Newcastle and 100 miles from Manchester. How about asking do you have an actual Consultant based where you live, we live in Cumbria the answer to that is no just elderly care with a interest in Parkinson’s. My wife is 58 and has had the decease for 12 years and to put it in one word it sucks.

Hi @RobbieB, @Mitch1 and @GentechE1,

I have spoken to my colleague who is managing this survey and she has advise that you email the PR team to share your complaint with them. Please email them at [email protected].

My apologies for the inconvenience - hopefully we’ll get this resolved asap!

Best wishes,

Same problem here sort of as sometimes works but the questions are ill-thought out & don’t take into account previous responses/options. This survey needs to go back to the drawing board (I was a professional researcher before I retired).

Hi Reah,

Apparently the survey is not open to those of us living outside the UK. Perhaps you could make this clear in the banner? :slightly_smiling_face:

Hi @RobbieB,

A few people have found issues with survey which I’ve relayed to my colleague who is managing it. Please send any feedback and/or concerns to our PR team at [email protected].

Best wishes,

Hi, so I can now access this survey, but I’m the carer. So my opinions don’t count. Really!!! If I’m not with him my husband is housebound, I am his ability to engaged with the world, I live through what he does so I think that maybe my perceptions may just , just have a teeny weeny value!!! So, with him sitting with me, we did a bit of survey bonding. Who designed this garbage? We clicked on age 66, occupational status, retired and then a number of questions as to the impact of P D on parenting. An extra line for Not Applicable might be helpfull. These are then followed by his body image questions. We stopped there. What on earth has this got to do with the general public or media’s perceptions. Maybe the organisation should look more carefully as to who they engage to develop their surveys.

I couldn’t agree more. Amateurish so we ditched it.

Hi everyone, :wave:

Thank you for taking the time to engage with this survey. We have worked with a trusted survey company to develop these questions designed to help us frame the everyday experiences of people with Parkinson’s so we can share them in the media. These include topics such as parenting (at any age, if you click you are a parent) and body image, as we know from feedback from the community that Parkinson’s can impact on all of these areas of everyday life.

The survey has also been mapped out so you shouldn’t be seeing questions that are not relevant to you based on your previous responses. We will feed this back, alongside any other technical glitches, to our agency.

The survey has quality check screeners which will screen people out who select impossible region and nearest city combinations (e.g. saying you live in Northern Ireland, but then selecting a nearest city of Portsmouth). Please check the geographical area carefully.

Because we are UK-focused, this survey is only open to people in the UK but we would recommend looking at the websites of Parkinson’s charities based in the country you live in to see if they provide similar opportunities to get involved.

For this particular survey, we are only gathering the experiences of people with Parkinson’s, but carers can fill it out on behalf of the person with Parkinson’s. If you are a carer, we have other surveys throughout the year, for example, you can complete our ‘What Matters Most Survey’ and share your views on our future campaigns:

If you have any other problems or feedback, please contact: [email protected]