Facilitated by Teresa ‘Dory’ Davies.
Cath and Hannah joined from The Bridge, Our Voice Matters in Hartlepool. They have struggle to connect with people during lockdown as few have technology. They devised a booklet which has been sharing information between people in a booklet and have had great feedback. The building is opening again on Monday with advice and support available to people on a one to one or as a small household/family unit by appointment. As yet there isn’t much demand for the appointments. Cath and Hannah sense heightened anxiety amongst people about going out.
Judith from FIT in Bradford says they have been having fortnightly Zoom meetings with regular 4 attendees.
Paul from Springboard Oldham said they are having a Zoom meeting this week. Their attempts at meeting have faced many obstacles and now there is a local lock down in Oldham. Paul also shared the reality check of meeting in their Church Hall which has very limited capacity and resources. Also mentioned that he was disappointed that Springboard didn’t get more of a mention in the What Next summary. Suggested that we should have them as group of the month soon to flag up what they have been up to. RN explained it is difficult to do justice and capture everything that everyone is doing.
Kim from Kim’s Café in Hampshire explained about her role and focus on GP practices. A lot of interest in the group today at having a focused Zoom meeting on how we can work with GP practices/Primary Care and CCGs. Kim’s group are hoping to meet in their church hall (up to 30 people) but are not allowed any teas or cakes (however there is a café over the road). Kim also reported having a Zoom meeting with Alumni in Scotland last week about GP issues. Kim’s work can be seen at Mission Dementia https://gpnen.org.uk/2020/02/25/mission-dementia/
Michelle from Dementia Voices East Dunbartonshire Ceartas Advocacy says there is no way they can meet in person at the moment. They have however been really developing their ways of connecting including increasing their newsletter from 2 pages to 20 pages for the latest edition. Considering strategies for anxiety, sleep disturbance and fears have all been covered including a mix of activities and lighter side of things. Michelle says she takes a lot of tips from the DEEP network.
George from DEEP in Shropshire says that they are planning a picnic in 10 days with the aim to bring together people who can’t or don’t connect through Zoom. Zoom meetings are attended by about 3 people with dementia plus a facilitator. They have been approached by the local CCG who says they have the time to address some of the issues and want to liaise with the group. George will be planning a Zoom with them but agreed that a Zoom more nationally would help contribute to this if examples of good practice are shared in particular
Chris from Ashford Phoenix said that their Zoom meeting numbers are down to about 4 , but everyone is being kept in the loop with emails before and after the Zoom meetings. They also receive the virtual Our DEEP News.
Dory from CABAN and DEEP in Deeside is sending out Our DEEP News to her group members who don’t already get it and also takes copies to her local residential home. Dory was one of the contributors to the Knowledge is Power booklet https://www.dementiavoices.org.uk/knowledge-is-power-booklet-handy-hints-that-might-help-make-life-a-little-easier-after-diagnosis/
The booklet is also being printed by us to be distributed across UK groups as an example which might be recreated with local focus.
Frances from Like-Minded and Dementia Matters in Powys says she is very cut off and hast seen anybody for ages. She shared the work of Dementia Matters in Powys activity with virtual meeting centres. Also shared her involvement with the Powys Dementia Action Plan Steering group – but she is the only person with dementia involved in that.
We asked the question how is everybody doing? These comments will be reported anonymously.
‘When I am in these meetings, I feel very guilty because I might not doing enough. But I am not a professional and I am facing my own struggles with the foggy days’
‘When we first went into lockdown I went in to overdrive. We felt we should be doing. But now I feel tired, I’ve crashed. I’ve had to give myself permission to slow down. I feel frustrations at not seeing people. ‘
‘Everybody’s anxiety levels are ++++++ Anxiety comes from uncertainty. Coming out of lockdown feels more complicated. I have had to go easy on myself’
‘You have to be more selective about what you can do’
‘You don’t feel you can do enough – but you can only do what you can do’
‘The network has been such a support from me and I’m just so grateful for it’
‘I can hear the frustrations of people, but I say hats off to you all’
The next facilitators meeting will be on Wednesday 12th August between 1230 and 1.30pm. The guest facilitators will be Philly Hare and Chris Maddocks.
