Filming for Leeds University

Last Monday Fiona O’Neill (Head of Workforce & Learning at the National Institute for Health Research )invited me to do some filming at Fairbairn House in Leeds for an online course.

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Leeds University has done many of these. On line courses are becoming  a popular choice for many people purely from a convenience point of view. It opens up courses to people around the world.

“MOOCs (Massive Open Online Courses) give people around the world the opportunity to sample some of the excellent education offered at Leeds, giving those unable to access a traditional university education the chance to learn from our world-leading academics.”

The ‘MOOC’ we started filming  today is called improving ‘Healthcare through clinical research’  and it should be ready in November. More can be found out about these courses at:

http://digitallearning.leeds.ac.uk/moocs/

Fairbairn House has much history associated with it – none more so than the fact that Queen Victoria stayed here on her way to open the town hall at Leeds – how amazing is that!

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Improving healthcare through clinical research’ , is aimed at anyone – the core aim is to help people understand what is clinical research and that it happens in the NHS. Today was the first bit of filming for the course. It was basically Fiona interviewing me about my experience of taking part in research . Professor Martin Rosser (NIHR National Director for Dementia Research) will be filmed  giving a clinicians view of the process.

The film crew of 2 were there when I arrived – sadly I forgot to get their names! But they were very amiable and lovely to talk to. They were taken first as we were going to film outside in the garden so needed to set things up.
Fiona came down to meet me soon after and we went back to her office to go through the questions she wanted to ask.
Once outside the young chappie asked me what I had for breakfast that morning as part of the sound check – I chuckled and said he was asking the wrong person to remember anything!

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This relaxed everyone and Fiona then showed off by remembering what she’d had–ha!
We then did the filming and amazingly it all went well and we did it in one. Fiona asked me about all the different types of research I’d been involved in; the benefits to well-being; the importance of the use of positive language by clinicians etc etc. The most significant question for me was:

“What would you say to people who might be considering taking part in clinical research?”

My response was:

“We need to have an alternative to just hoping and wishing you don’t get dementia but this can only be achieved through research. I’d suggest logging onto the Join Dementia Research web site and look at the personal stories of those of us already taking part. There’s also a very good FAQ section too. I would ask them what have they got to lose? Being involved will make you feel valued as you’re contributing to possible future developments – you could be helping your children – remember there is no cure so without willing volunteers to be involved in testing new theories, there will continue to be no cure – is that what you want for your children?”

They’re expecting around 15,000 people to sign up to the course, which is amazing. So my words will be around long after I’ve lost the ability to communicate – a very comforting feeling.

I’ve been invited back at the beginning of August to take part in the filming of part 3 of 4 of the course – a group discussion. A group of people have been invited who are participating in research to talk about our ideas around respect and ethics in research – can wait!
I could have said lots more and I forgot to say that you don’t have to have dementia to sign up to JDR!!!………hopefully I’ll be able to get that in when I’m back there in August

Another great opportunity to be involved…….

Fabulous word in the middle of the grand staircase....
Fabulous word in the middle of the grand staircase….Collaboration, Innovation, Respect and Honesty………
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About wendy7713

On the 31st July 2014 I was diagnosed with early onset Alzheimer’s. I may not have much of a short term memory anymore but that date is one I’ll never forget. I’m 58 years young, live happily alone in Yorkshire, have 2 daughters and I’m currently still in full time employment in the NHS. However, I’m now in the process of taking early retirement to give me a chance of enjoying life while I’m still me. I've started this blog to allow me, in the first instance, to write all my thoughts before they’re lost. If anyone chooses to follow my ramblings it will serve as a way of raising awareness on the lack of research into Alzheimer's. It will hopefully convey the helplessness of those diagnosed with dementia, as there is no cure – the end is inevitable. However, I’m also hoping I can convey that, although we've been diagnosed, people like me still have a substantial contribution to make; we still have a sense of humour; we sill have feelings. I’m hoping to show the reality of trying to cope on a day to day basis with the ever-changing environment that dementia throws at those diagnosed with the condition. What I want is not sympathy. What I want is simply to raise awareness.

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