Someone recently asked me whether I got nervous before speaking at events. I would have done in my pre dementia life but amazingly I don’t any more. After thinking why, I soon realised that people see me as a person with dementia and when I talk I exceed their expectation of what a person with dementia should be capable of so that removes any pressure.. And if I fluff my lines, so what, after all I do have dementia…….I do an awful lot more prep work before any event so the only criticism I experience is usually self-inflicted:)
Last week I went with Piers Kotting (Programme Director, Office of the National Director for Dementia Research) to the All Party Parliamentary Group Summer Drop in session at House of Commons with him to talk about Join Dementia Research. An offer I couldn’t refuse, although if I’d know it was going to be the hottest day of the year in London I may have thought about it for a few more seconds!!
The invite was sent out from Lord Tunberg – Chair of the All-Party Parliamentary Group on Medical Research and was entitled:
The Journey of Medical Research: From Bench to Bedside. Transforming Patients’ Lives and Boosting the UK Economy.
They’d predicted temperatures well into the 30’s……..that’s ok I thought, as I’ll be travelling first thing when it’s cooler…..mmmm, hadn’t bargained for the air con in my carriage not working. We melted but before we could melt so much that we moaned the nice train guard brought round bottled water – brownie point:)
When I stepped out of the station at Kings X you could feel the heat slap you in the face…..
I was going to get a taxi there but there was chaos at the taxi rank and gridlock on the roads around so decided to venture into the tube. I was so surprised to see it was quiet! Maybe everyone was avoiding it and the tube was cool when it arrived – result for a change…
I got off at Westminster and immediately took a photo to tweet (sorry, couldn’t resist) and then asked a nice policeman where I was supposed to go.
The men on security were lovely and recognised my Alzheimers badge so we had a chat and once everything had gone through the scanner I was let loose in the corridors of power – ha!
We’d been asked to allow 30mins to get through security and arrive an hour before the start to set up. Well I took the opportunity to amble through the great halls of power – quite amazing.
When I got to the room I was looked after by the organiser, Katherine Mayes and team and immediately supplied with water and lots of ice as it was a bit of a sauna in the room. I met Fiona Strachan, a clinical researcher from Edinburgh, who then turned out to be a ‘Twitterer’ and shared the same passion I have for the #whywedoresearch initiative and knows the same group of people I know! What a small world:)- more photos, more tweets….
Piers arrived and set up the techy things – 3 laptops with a slide show, JDR web page and Stats page – needless to say I didn’t help…..
Once the canapes came out we knew to expect the guests. It was a bit of a shame but the majority seemed to be from the House of Lords – I was hoping for more MPs – but maybe the heat put them off. Someone came to chat who’d been sent by Lord Tebbitt. He sent his apologies as he’d wanted to come and see us but his wife was too ill to leave – thought that was nice!
I was surprised at the lack of knowledge by some of the people – nothing new, but it just surprised me for some reason. I thought they’d have all done some homework since the Prime Ministers 2020 Challenge. Me and Piers tried to say everything we wanted to say but we’re not sure what impact it had. I was introduced to Lord Prior at the end and we chatted for a few minutes – obviously no details of the chats as I didn’t have my laptop to tap tap away on and record so only have vague recollections of what was said.
Each time Piers let me lose, I spoke to them about no amount of government money being of true value if we couldn’t engage willing volunteers; that our biggest barrier were often clinicians and Gps who ‘protect’ their patients instead of empowering them to reach their own decision; how being involved in future developments give patients a feeling of being valued; how early diagnosis enables strategies to be put in place and therefore save money in the long run as the need for services would be reduced….etc, etc – nothing you havn’t already heard from me I don’t think. The organisers had set up a ‘lab’ and had a photograher on hand, so me and Piers couldn’t resist having a photo.
At the end we said that although the impact may have been small we were at least invited and we met the Deputy speaker who gave us some wonderful tips for engaging MPS – Piers had the gem of an idea to ask him how we could get the House of Commons & Lords involved in raising awareness and he immediately gave us ideas of creating a chain around the House of Parliament (to ‘Join’ together both houses) but an even funnier idea was to ‘creatively’ assess the age demographics of both houses and do something with the resulting data around the likely incidence of dementia……. as we all know, lots of these people are in their later years…….our minds were in overdrive thinking up possible ideas…
When me and Piers made our way out of the building we couldn’t resist taking a selfie of us in the grand hall – snap! We then saw the sign ‘No photography allowed’……Ooooops, too late:)
It turned out that some tube stations had been closed, so thankfully Piers took control and guided me to a cab. We had a magic cabbie who offered us a coke and said Coca Cola were having a promotion in cabs for Happy Wednesday! Well Piers being Piers, with all his wonderful quirky ideas, immediately took a selfie of us showing the brand and then tweeted Coca Cola to say ‘we’re promoting you so will you now promote Join Dementia Research’ – genius!
All in all an interesting and different day – one that I wouldn’t have experienced if I hadn’t been diagnosed with dementia – every cloud……:)