Wednesday, October 22, 2014

At last, after many years………….

……we've finally launched a live test of Join dementia research, in the North & West London areas, where people can register their interest in taking part in dementia research. You can click on the link above to see what it's all about. You can also read more about it here on ARUK's dementia blog.

I've been going on about the need for something like this ever since my mum died back in 2005. For years it felt as if I was banging my head against a brick wall but finally we seem to have loosened a brick or two and things have moved forward.

I first became interested in this project back in 2009 after having attended the Ministerial summit on dementia when 2 of the issues I was passionate about were highlighted namely:
  1. the need for a register linking patients with dementia to researchers in the field
  2. dementia research charities forging closer links with the pharmaceutical industry

At the summit I met follower campaigners and also a representative of DeNDRoN (dementia and neurodegenerative diseases research network) who I've written about before. For a while I heard nothing more about it until I was invited to represent Alzheimer's Research uk at a meeting to discuss the way forward. There are also representatives of the Alzheimers Society. Both ARUK and the Alzheimer's Society will be manning the helplines for Join dementia research.

Originally the project was being developed under the working title of the RAFT register i.e. Recruitment And Feasibility Tool. That title really didn't appeal to anyone except the technical development team so one of the first things we did was brainstorm a more user friendly name for it! I won't bore you with the details, the restrictions etc, suffice to say it felt like pulling teeth and well done to everyone who finally settled on 'Join dementia research' which conveys exactly the right message.

After a few meetings the project stalled but then last year it all started to get very exciting with software development and strategy meetings.

The start of this year saw many of us involved in a conclave to discuss the way the system worked and iron out any issues in the development phase before the system could go 'live'. This involved scrutinising every bit of how the system worked, e.g. was it user-friendly, were the right questions asked, did it work well from the researchers point of view, how did it look from the user's viewpoint, etc etc. It wasn't something you could just look at quickly and agree, you had to really concentrate and I spent ages each week going back over the test screens to see if all the links worked and the wording was easy to understand.

Then back in July the system went into live trials just in the one region to iron out any teething problems before it went across all regions.

At the moment there are already 569 registrations which is absolutely brilliant!

Last week I went into London and met some new recruits who have volunteered to help spread the word in they respective regions. The event was hosted by Adam Smith, DeNDRoN programme manager seen here talking with Julia Simister, Research Delivery Manager DeNDRoN for the Kent, Surrey and Sussex region. I'm hoping we'll be joining forces to help spread the word when the system gives across all regions.


After we'd all introduced ourselves, Adam started by giving an outline of what the service is all about, the benefits, how it will be implemented in the future and what the role of Champions will be. I must note that we Champions are not employed by them and our work is done on a purely voluntary basis with just our travel expenses reimbursed.

Then there was a little slot entitled 'Campaign planning - a personal journey' which was my cue. I'd received an email late the previous evening asking if I would mind telling my mum's story, my reasons for supporting Join dementia research and what I've done to publicise the work of Alzheimer's Research UK etc. Thankfully I'm done this so many times before that I'm quite comfortable standing up and talking about it, although I do sometimes get a bit teary.

I'd taken along my presentation slides from the Alzheimer's Show back in May as all the points on my first slide sum up why I've been supporting ARUK all these years. I did, however, temper down some of mum's story and missed out the really dreadful last couple of years because there were several people there who are living with some form of dementia themselves. During the lunch break many people cam ever to thank me and say that they identified with many of the things I'd said about how the disease progresses and to share their own experiences.

There were 4 tables with about 6 people on each, some have been involved with Join dementia Research for a while but other were new recruits and had travelled a long way to be present, which was wonderful.

After lunch there was some Media training giving tips on radio and TV interviews. For some, this was their first experience of interacting in this way but everyone did really well. Even though I've been a Media volunteer for ARUK for 10 years now there's always something you can pick up from this sort of session.

It was interesting that Peter, a fellow Champion seen seated at the front of the photo below, objected to references of people "suffering" from dementia/Alzheimer's. He prefers the term "living with" as he has a form of dementia that has allowed him to live happily with his condition for many years and said that he doesn't suffer at all. However, in my mum's case I know for sure that she did indeed suffer as she often remarked that she was tormented by not being able to remember things and that nothing made any sense any more. She was especially upset when she realised that Mike and I had to do so much for her. For someone as bright and intelligent as my mum it was indeed a torment.

A few of us were not able to stay for the whole afternoon but the photo below shows most of those attending.

As I was dashing off to catch my train, Zara & her camera caught me in the corridor. I must learn how to put my badge on straight!

So what happens next?

We make plans! How can we maximise the publicity for Join dementia research? How and by whom will the message be delivered? Who do we target? (e.g. local Care groups, Memory Clinic, WI groups, Doctors) How can each of use our unique skills to spread the word? This is so exciting and I am delighted to be a part of it.

Together we will make a difference.


Kathryn Vercillo said...

Yes! You are doing great, great work.

Susie Hewer said...

Thanks Kathryn. I know you understand how important it is xxx