Conference speakers with dementia need better support says Dory.

Hi this is Dory and I just want to do a diary about – you’ve probably all seen it on Twitter – I noticed there was a HCUK conference (Healthcare UK) going on in London and they had speakers on there. It was about end of life for people with dementia they were talking about but they didn’t have anybody living with dementia present.

So I tweeted had they got any persons present…with dementia present? The reply was they couldn’t find anybody who would be willing so I said they hadn’t looked very hard and that they need to go on the DEEP website and I’m sure they’d find plenty of people willing to speak at the conference.

Anyway, the next day I got an email to ask if I would go. I said I would but I would need the hotel booking and travel arrangements made. They said they’d do this but to cut a long story short two days before the conference and I was going to leave as well, inbetween, I still hadn’t had any arrangements sent through to me or any tickets so I got quite anxious about it and my daughter just emailed them and cancelled this.

And then I was asked to go to a conference talking about hospital experiences for people living with dementia. I said I’d go to that one and they did send all the information I would need. They put me up in a very grand hotel, I think it was £275 a night. They didn’t cover any food expenses for the night before and it was just…although it was a grand hotel it was not suitable for a person living with dementia. It was all shiny marble black, cream and also glass. I just walked into so many walls and mirrors and so I fed back on that. I couldn’t afford to eat in there because it was just so expensive so I had to go and find somewhere cheaper to eat.

So that was the experience of…so there’s great feedback about my…what I said and my talk, my presentation so…but I don’t think they sort of look after people or don’t realise what people need, people living with dementia. Maybe that’s why they didn’t ask anybody in the first place but I don’t know. Anyway, OK, bye.