Yesterday saw me in Leeds at an NIHR event (National Institute for Health Research). Derek Stewart had invited me to their annual Staff gathering at the Horizon centre in Leeds to be in the discussions around the value of patient involvement in research.
The day really didn’t start off well as my taxi was so late that it had to take me to another station to pick up my train in Brough. It was such a shame as the sun was out over the Humber and I would have been able to get a lovely pic of the bridge this morning……😔, so instead we have one of an old ruin that I’ve never been able to find out what it is but it’s always looked very pretty from afar….
very stressful start to the day though….
However, Brough station, which is a tiny station with a big ego, has a wonderful tea cabin, with a delightful chappie selling Yorkshire tea so all was right in the world once more…….
Once I got to Leeds, I had the advantage of having the amazing Horizon walking video to take me to the venue – take a look on their web site below ….and met one of the staff looking lost with her map so I showed her the way😂😂😂
Derek Stewart met me inside and sorted me with a cuppa and a member of staff with a smiley face badge was assigned to see me ok for the day……..and I even met Derek’s wife who follows me on Twitter, so that was a bonus…..
It was their staff away day, and apparently, I spoke to them all last year at the same event 🙄 – so the venue was packed with people from all over the country……..
Claire Morgan started off proceedings stating that 12 people like me were there today to remind the 200 staff why they did what they did.
It’s hard for them to understand where patients fit in and how important their job is to our lives, which is why we were there……
NIHR is 10 years old this year and have had 5,000,000 participants over its lifetime. They’ve delivered 7000 non commercial studies. The numbers have increased year on year. All the research they do will ultimately benefit all of them in the future. We may be the patients of today, but all of them could be involved in research of the future. The NHS, of course, as we all know is under great financial restraints, but we do have inequalities in access to research which needs addressing.
Claire then mentioned the example of dementia – Over 35,000 people were able to access research in dementia last year. Join dementia research now comes under the clinical research network.
An important question to ask is:
“How does the patient want to engage in research?” So much of our lives revolve around technology so more technology needs to be used to engage people in research as one option.
If it’s not working, which it clearly isn’t as willing participants are always hard to find,, we need to change and it’s needs to be acceptable to staff to challenge the system and come up with new ideas.
Derek Stewart then started talking about “What could patients do for us”
He asked ‘What’s it like for the individual” to take part in research. There’s 12,000 people a day say yes to taking part in research, but how can we encourage more…..
“How can we hear more from patient experience”? We know more about our condition than anyone, so how can we encourage more to be involved?
We then split up into groups to discuss….chaos ensued and the 12 patients were told to go against the wall and hide until the chaos had sorted itself –ha!. We were then split and each had a table of employees from all parts of the organisation in order for them to hear why we’re involved and how it applies to their job.
I had 2 wonderful groups of people who asked lots of questions and I made sure they realised that no matter what job they did it was an important cog in this very important wheel
After a wonderful lunch it was quiz time where we split into teams and answered questions all about NIHR……🙄 very funny……..I got 2 right……😂 but my team, admittedly through lots of guess work, scored 10 and came second overall! Yehh!
It was then the directorate sessions so the 12 patients all left and got together in a separate room to feedback about the day with Karen, Roger and Derek.
“I didn’t expect people to be interested in what we had to say, but they were”
“If one person goes away and does something different from what we had to say, I’ve done my job”
“I heard the penny drop – where research meets patients”
I was very well looked after throughout the day, with people making sure I had a cuppa and everything else I needed. So well organised and such a pleasure to attend. I think I actually left an hour before I meant to – I suddenly looked at my watch and think I got the numbers muddled and rushed off🙄
Staff need to be valued but patients need to be valued as well, and being involved in research makes me feel valued once more….