I was invited by the Alzheimer’s Society to go to the Service Users Review Panel Conference in Manchester here in England and obviously said yes please. There were lots of groups represented in the room with both group facilitators and a few people with dementia – PWD. For those of you who don’t know what these groups are about I shall tell you what they are and about my day.
I belong to the West Berkshire Empowerment Group. This is a group that meet once a month to discuss and review…just about anything. Any issues that have any sort of impact on someone living with dementia. As part of the DEEP – Dementia Engagement Empowerment Project there are around 38 groups in England, Wales and Northern Ireland, and more in Scotland. The groups are made up of people with dementia and a facilitator and is designed for people living with dementia to have a voice in just about anything locally, hopefully to also have an impact nationally.
First of all, I shall admit I was invited to this day – to go to a conference in Manchester and actually I had no idea what it was about or why I was invited. I get so confused as to each of the Societies, Services, Groups, and Organisations are and whether they are affiliated to each other. The trouble is one organisation is an umbrella for one topic, which in turn is an umbrella for various groups…and I can’t keep up with it. So there I am going to a conference that is by the Alzheimer’s Society Organisation and had no idea it was for Service Users Review Panel groups, and then….I had no idea that the West Berkshire Empowerment Group was a Service Users Review Panel. And, where the hell does DEEP come into it all, who is that affiliated to? I have dementia for goodness sake I am struggling to keep up with who is who these days…
Anyway, it was a great day in which highlighted lots of work that many of the groups had done and were doing. For instance, one group has worked with Royal Doulton in producing dementia friendly china ware which is not an insubstantial impact in dementia care.
In our group the West Berkshire Empowerment Group in the past we have given our opinion to research on books/novels specifically published for PWD. Reviewed electronic gadgets such as key finders. The group went to the Royal Berkshire Hospital at Reading to look at the signage and our review was passed back to the hospital for improvements. We suggested a purple wristband for PWD so that they can be easily identified, because we know that many people like myself do not show obvious signs of difficulties, but after an anesthetic we could quite badly affected with confusion. This has now been approved and the hospital has put this practice in place. We also look at public transport and whether that is dementia friendly. The groups also help the local community become dementia friendly.
This conference looked at what format worked for each of the groups, for instance some of the groups were on a 12 month basis only. Some of that is because of funding. The group I belong to rolls on and on and on…we have no time limit. Our facilitator Louise Keane is particular active in ensuring that we have some great issues to discuss and review, and it became apparent to me that her attitude towards the group is brilliant and makes our group attractive for institutions such as Reading University, and other services to approach us for our opinions. Thanks Louise!
The opinions that were talked about were being looked at those organising all of the groups and it was quite surprising for me to hear that the lack of support for facilitators was felt by some of the new groups. But this was a topic and a great one too to be openly discussed: could it be improved and enhanced. For me it was interesting to hear some people say they didn’t feel supported in knowing how to end a group after the 12 months, or how to deal with someone whose dementia had progressed and could no longer take part in any discussion. So it was good this conference highlighted these issues, and for me as a PWD to hear that. I am sure that training for our facilitators will improve to enable the groups to grow and give us our voices.
It was great to hear how some of the work that the groups had done had impacted not only locally but was being looked at nationally.
It just goes to show how small groups of people with dementia can have such a powerful voice if only given the opportunity to speak. Anyone living with dementia who wants something more than just pleasurable activities, who would like a voice then I would encourage you to join your local DEEP group. You can find your nearest group on their website. Come along its great to be involved and obviously you get a cup of tea!
Handbagwarrior; verbal ramblings 
Thanks for sharing your thoughts on the hotel – sounds confusing for those of us with dementia. Also, good to hear about the DEEP program -sounds like quite an excellent project group. I don’t think we have anything that casual and inclusive of people with dementia.
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Yes they are good Paulan, it is a really good group to go to locally, and I am pleased to see that they are growing in numbers. What is great is that as a local group we can educate our local community and make a difference. Educate local businesses to be dementia friendly.
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What an interesting post. I like the idea of the purple wrist band. When my dad was in hospital we wanted something which would identify him as having dementia. It should have been obvious but often wasn’t so it was recorded on his chart he was pain free. When I asked hwo they knew this they said they asked him if he had any pain. Dad was of the generation which always played down any health problem so of course he said no when they asked. He hated jelly and they always gave him it for pudding if none of us had been there to do his menu. ‘Would you like jelly?’ elicited a ‘yes, please’. It would have been great if there was something like the purple wrist band which indicated he had dementia and a different approach needed to be taken.
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I felt really passionate about them understanding that dementia may be hidden, and knew that this is something they do in the US thanks to some of my friends, so thought I would try to get it done here. Hopefully it will make a difference, especially for times when food is just left for someone to feed themselves when they are unsure of what to do. So many reason why every hospital should use this system. So simple yet so effective.
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