Strange title for my blog but all will be revealed…..another long blog but such a good day….
I opened my curtains and found a rainy dark world greeting me yesterday. The same taxi driver as Tuesday waved to me to herald his arrival as per usual and we trundled, amincably chatting, to the railway station.
I was met by disgruntled passengers as the ticket machine was playing the wrong game for them and the first train to Hull had been cancelled due to vandalism 😔…….mine was merely delayed a few minutes so in the grand scheme of things everything was ok 🙄…….
The rain ceased and the early morning skies decided to come alive on the first leg of the journey
I was heading to Sheffield for a meeting with a group from the Norwegian Health Association who were over here to find out how the Alzheimers Society Research Network volunteers worked. Our lovely Yorkshire leaders, Sandra and Barbara were heading the visit. Sandra had been the organiser extraordinaire and had everything sorted perfectly, even offering to meet me at the station.
Today I would be chair monitor helper as well as ‘Tweeter in chief’ – 😂
Anyway…the trundle continued, we left Hull more or less on time (feeling very blasé about delays today as a few minutes seems positively a bonus at the mo!) and we headed alongside the Humber
I finally arrived in Sheffield and Sandra had txt me to say she was running on time and met me with a hug and a catch up. We decided to follow the map and trundled through the streets of Sheffield to the venue where we were met by lovely smiley faces. It was a Quaker centre, just like Woodbrooke and they were soooo helpful.
Chair monitor sprung into action and we had the room set up in no time. The smiley faces even made us a cuppa……
They have a wonderful lift called ‘Muriel’. Muriel has a fab Yorkshire accent Apparently tells people what’s happening in case of sight impairment etc……..I was walking up the stairs when they told us that🙄
Everyone arrived and the Norwegian people were very friendly and smiley…….we went round and introduced ourselves so we all knew our connection……….
We had research network volunteers, a phd student, her supervisor Clare, Sahdia and all our lovely guests from Norway. They were from a variety of roles, Innovation company who want to learn how to fascilitate PPI involvement. They asked to film some of the talks as they want to inspire researchers to involve people more.
Gry from Norway started – a couple of years ago they didn’t have involvement from lay people and now the government has made it a priority to include people now when applying for funding. Their government suggested looking at the UK as we do it well within the research network.
They are called Norwegian Health Association and not Norway Alzheimers society because they work with many other conditions within public health. They are a big organisation that has been around since 1910 where they started with Tuberucolis as the sole disease……..they don’t get government money so have to apply for grants and fundraiser like any other charity.
Barbara started off talking about the history of the research network. Barbara was a founder of the network 20 years ago last month. It began because the carers had so many questions about why, how and when and it felt they needed part of the Society to be Research focused and so we were born.
It was such a wonderful talk by Barabara giving our visitors so many ideas of how to include people and the vast array of valuable roles we can play in research. Barbara finished off saying that the aim is:
“To improve care of people living with dementia today while searching for a cure for tomorrow”
Ciara was up next about the plans to develop for the network. They have had a big recruitment drive recently for Network volunteers and now have over 300 and quickly rising. They’ve apparently made it much easier to apply and through August have been running a campaign to recruit new people and have received over 100 just through that so more successful than they ever imagined. They are trying to encourage more people living with dementia to become volunteers but are now looking at more varied roles that may suite some people with dementia better and enable them to be involved.
There were so many questions from our visitors. Apparently some researchers in Norway believe the only people living with dementia who could be involved are academics with Young onset……..’Let me at ‘em’ I said………
Me next……giving my perspective of being a recent network volunteer….one bit I said was:
“While inevitably, you have to use academic jargon and complexities when in some academic settings, when in the public setting, taking part should have an obvious reason, should be seen as being valuable, and more importantly should be seen as fun and interesting.
No one wants to feel overwhelmed, out of their depth, to feel ignorant or not understand what’s happening and why.”
Clair was up next as a newbie volunteer and spoke of her experience and why she became involved. Her mum had Alzheimer’s and they too felt abandoned. It was finding Admiral Nurses that saved their family.
It was the experience of what she and her family went through that made her join the research network. She wanted to be involved in something that would bring about change.. Joining the network was one of the best decisions she ever made. It’s helped her deal with her grief…..wonderful….❤️
Sandra finished before lunch talking about the area co-ordinator role. She spoke of her connection and why she joined and her personal story. Being a research volunteer enables carers to work from home, dove tailing their caring duties as well as choosing where they want to travel. She said how her life would be much poorer if she hadn’t met so many wonderful people in the Network, and they were met simply because of her mum in law having dementia…..
Personal stories make researchers realise the reality of what they’re doing, of the value of their research.
Lunch time and a chance to catch up with everyone. One of the lovely Norwegians came over and said how it always rains where they are in Norway so they brought me and Clair a Norwegian rain hat, which they also later gave to Sandra and Barbara – they took photos of us wearing them so no evidence I’m afraid😂
After lunch it was over to the researchers to say why we were important to them in their research. Sahdia was first talking about her Caregiving Hope study – how willing and prepared are people to care – and the part we played in it. We’re having an event on October 7th to showcase the study and work towards ideas for the next stage….
Next Claire Garwood and from a bio medical viewpoint of involving research volunteers. It’s a bit more difficult to get public involvement to the level social researchers do. From working with the research volunteers she get’s Focus, Motivation, Value, Insight and opportunity. It brings the real world into the laboratory. She feels really valued by monitors. So often researchers are often measured in publications and how much money they bring into the Uni so Research volunteer monitors make her feel valued again……Martyna, Claire’s phd student in her 2nd year, then spoke about her bio-medical research. She has met her volunteers once so far but it was a relaxed meeting and the pressure and stress of her project disappeared as she was reminded of why she is doing what she does.
Dr Catherine Hynes, a trainee GP in research was the last one who spoke about Research Partnership. She is looking at Carer perspective on proxy decision making for people with cancer and dementia. She is not funded by the society but they allow access to the Network Volunteers.
After a final cuppa tea we all got into the goldfish bowl and the questions flowed…
I asked if the national health association has a twitter account. They don’t and so we had a discussion on the value of contacts on the value twitter as a source of information. They’re setting it up tomorrow…….👍……..it may be that it’s not as popular in Norway, but it has to start somewhere.
We spoke of the brain bank, clinical trials and of how our relationships can continue.
As the clock struck 2pm ‘Brain dead and exhausted moment’ arrived but what an amazing day hearing how things are in Norway; sharing ideas, sharing stories, sharing processes……..wonderful, should be more of it………I hope we all stay in touch and meet again………