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People WITHOUT Parkinson's needed to volunteer for research

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Keld
People WITHOUT Parkinson's needed to volunteer for research

I do not have PD - so I'm a PwoP (Person with-out Parkinson's)and have volunteered when I can to support researchers as a control subject.

A few times I have been told that it is not always easy for the researchers to get the numbers of volunteers who don't have PD to take part in their research.

I have got in touch with researchers, who have advertised for participants on this website, and offered to travel to take part. Initially I expected they would say 'No!' you live too far away.....but not so!

I work in a school and live south of London - but have been called to take part in research in Manchester and Birmingham. When I've spoken to the researchers they tell me they often have plenty of PwP but not PwoP!! So I have been asked to take part in spite of the difficulty of fitting me in as I work full-time and the time and cost implications of living where I do in relation to their labs....

 

Go to 'Research' on this site...then follow the links through 'Get involved in Research' to 'Take part...' then scroll through the list of projects...

I know that the project about 'Learning New Movements' in Birmingham is looking for PwoP to be able to get the right number of people to have a statistically sound piece of research, and as age matches for their PwP volunteers.

I have just been in touch with the 'Investigating Pain in Parkinson's' research team in Manchester and they have said they will ask me to take part in the summer if they don't in the end recruit subjects from close by.

I love being part of the research projects and have had some really good conversations with people on the train journeys...(I always wear a PUK T-shirt)...and raise awareness of PD. I have met a specialist geriatric nurse, and a Dr who was doing genetic research, and a young man whose father had recently been diagnosed and knew nothing about PUK---he does now!

Keld

 

benji

After so many years on this forum I did not know that PWoP could be involved in research. I knew that they need a control group for any research but thought that was randomly sourced via GP surgeries etc.and not through PUK.

I am off to have a look, I would love to be involved in any way that I can.I have looked at Research projects many times but they  always seem to be focused/recruiting, those PWP and miles away from us here.

 

Thank you Keld.

benji

I  see that I was mistaken in my previous post and thought that this was a new part of the forum, BUT, this is an area of the website that I have visited before AND, once again, not one of the research projects is within a days travel, there and back, for us. All in major cities in the north, Midlands, London and the south.

I have participated in online questionnaires but, after one  toe in the water when it materialised they only wanted advice on how to phrase THEIR questionnaire, I have not taken part in one of those again.Beware any Ox-Paq  questionnaires. My concerns andquestions were were not addressed by the researcher, neither did they provide the results of their research ( they couldn't as it was not  genuine research just using members of the forum to    formulate a questionnaire  for their own ends ) but PUK resolved that issue to my satisfaction when I pointed this out.

Parkinsons affects people in all parts of the UK and none of us, PWP and PWoP, should be excluded purely by reason of where we live!!!!!

Keld

benji,

glad you found the lecture interesting - I hope more people find it on the website.

Sadly Parkinson's Disease is how it is referred to - but am a bit horrified about the affect it seems to have re the Mortgage - hopefully someone within PUK will respond about that?????

If you look on the PUK website page about getting involved in research, that is where the PUK funded research projects are 'advertised'

 another way to find out about projects is by joining the Research Support Network and you will get regular emails about projects needing both PwP AND PwoP....

I have taken part in loads of different projects, and as I am a bereaved carer am able to travel around to reach wherever the work is being done. The researchers have a budget to pay their volunteers - so you are not out of pocket.

I have always found the researchers very helpful, and keen to share their work and ideas and listen to the description of my journey with PD supporting my Mum.

Sadly I have come to realise that one of the reasons they are keen to accept healthy controls for their research is that not enough of us put ourselves forward.

Other things I have become involved in are as you describe - helping the researchers put their projects together and word their questionnaires, or phrase their descriptions of what they are proposing to study.

PUK are working hard on a new approach to ensure research funds given to researchers from the PUK funds raised by fundraisers etc, is used well.

It is called PPI - Patient and Public Involvement. By working with people like you and me and others affected by Parkinson's who know first hand about the condition - our input is invaluable to keep the researchers in touch with 'who' their research is all about. It takes them out of the lab and away from 'science-speak' and  supports the researchers in focusing their research to further the search for the cure/better quality of life/control of symptoms...etc.etc

The latest Progress magazine has articles about getting involved...one with me talking about my involvement with Lorna Rixon research. At the moment I am helping PUK with a PPI Volunteer Training Pack.

Join the Research Support Network and you will find that wherever you live there is lots you can do to support their work...not just being a volunteer guinea pig in research but on-line reviewing articles/grant research applications/reviewing policies/being involved by telephone...etc etc...

I love what I am involved in and get out of it as much as I put in!!

Keld

 

benji

Hi Keld.

I have been a member of the  Research Support Network for many years and am now part of a small  offshoot of that larger group in  this area. With    PUK head office leading us, for now as we are in the  first stages,we have been praised for one suggestion that came about at our last meeting. e mails are flying to and fro regarding this innovation regarding researchers speaking to PWP and their approach to this. We are compilnga list of things that woul help PWP be more involved and to understand what they are conveying to us.

As a result of these meetings I have a group of final year pharmacy students, who are involved with research into Parkinsosn, attending oneof our branch meetings soon.. Then they may have a better insight into P, rather than just a textbook picture of the condition,because we are all different....symptoms, medication, etc.

Keld

Benji,

Wow you are doing a lot within  PUK.

That group of final year pharmacy students that attending one of your branch meetings is a really good idea.Apologies If I misunderstood your earlier posts - but I guess my previous post will help to inform those who are not aware of how RSN works and the opportunities open for PwP and PwoP!!

Keld

benji

No apology needed Keld

Your thread is an important one.

Joanne M Parkinson's UK

Hi Keld,

Thank you for posting, I agree with benji that this is an important thread and I'm sure it will be very useful for people interested in taking part in research.

I just wanted to check your question about the affect on a mortgage? I'm sure someone from the team can comment on this, but I just wanted to check where this is mentioned in so I can follow this up? Apologies if I've missed something that's already been discussed!

Best wishes,

Joanne 

Keld

Hi Joanne,

It is in the thread I started called the Facts about Inherited Parkinson's....Benji read and commented on my post ( he mentions the 'mortgage' in post 2) and then he read and commented on my other post I made in this thread and I responded to his comment about the mortgage in the wrong thread!!

Hope you find it OK

Keld

Joanne M Parkinson's UK

Hi Keld,

Ahh that makes sense, I hadn't spotted it on the other thread, but have seen it now!

I've checked with our Policy team who have pointed to this Equality and Human Rights Commission page, which gives financial service providers guidance about their obligations according to equality law: https://www.equalityhumanrights.com/en/advice-and-guidance/equality-law-banks-and-other-financial-services-providers

This isn't something we come across often, but they have suggested that anyone concerned about this, or in the situation Benji described could contact the Citizens Advice Bureau for clarity and for help going to the bank with something authoritative, and also get in touch with their MP depending on how this contact goes.

Best wishes,

Joanne