Welcome to the Advocacy and Dementia Blog for Stoke-on-Trent and North Staffordshire. Providing information on the Advocacy Project and the Peer Advocacy Support group. Providing a voice for people living with dementia. *We do not endorse the content of any advert shown on this site.*
This week is #DeafAwarenessWeek . Currently there are 12 million people living in the UK with some form of hearing loss. The Beth Johnson Foundation endeavours to ensure the services we offer are accessible to everyone. We use various methods to support people living with a disability.
One of the methods we use when supporting someone with a hearing impairment is to wear face masks with a clear panel. We use this type of face mask as we understand the importance of lip reading and facial expression for a deaf person.
Similarly to many types of disability being deaf is an hidden disability. Therefore although it is #DeafAwarenessWeek this week please always be aware. Seen is a photo of an advocate wearing a face mask with a clear panel!
As always, if you need any information regarding Dementia advocacy at BJF Contact Betty.machin@bjf.org.uk or phone 07961752111.
Our BJF Peer support group have been working with staff in an effort to make BJF and our meeting and communal spaces more friendly. This will cover everything from the car park, our meeting spaces and most importantly the biscuit plates!
Our staff member Hilary met our peer support group today to ensure we can make our spaces dementia friendly and accessible to all. Members discussed door signage and colours, table and chairs, carpets and clutter and bathroom changes. We are hoping to make a positive change for everyone who visits our BJF building and welcome any changes when they do to ensure we are inclusive to all.
Thankyou to Hilary and as always our open and honest Peer Support Group members.
Our peer support group members have had a busy few weeks working alongside Keele university students. On the 19th and 26th of February 2021 we were joined by 17 first year medical students over 4 meetings in the 2 days. Each member of BJF peer support group spoke about their personal dementia pathway some spanning 10 years, some just starting out, and had questions from the students after each pathway. The meeting was very interesting and valuable for both the future doctors and our members, the students fed back at the end of each session;
‘The whole session has been SO beneficial for me, and I really think I will take a lot from it.’
‘Thank you for sharing your personal stories with us. Talking to actual people living with dementia is so beneficial to put all the fancy terms in books into practice.’
‘I understand now the importance to treat the whole person, holistically, not just the textbook diagnosis of dementia. Looking at the individual not the number on the page. I will be mindful of this in the future.’
‘I’ve learnt to think about dementia with more of an open mind, it is not just about memory loss and worst case scenario. We need to emphasise the importance of why the person is visiting the GP, not just to jump to a label.’
‘Listening to the person and how their symptoms are effecting them rather than fitting them into a preconceived category.’
We are so honoured and proud to share our pathways with future doctors, explaining what people living with dementia need from their GP’s. We hope that our experiences both good and bad will shape tomorrows doctors and ensure the importance of dementia is heard.
This week we would like to specially mention one of our valued peer support group members John. We celebrated together on Wednesday by throwing John a surprise birthday party on Zoom. Members got together to send cards and presents to John to make his day as special as we could during these uncertain times. It is good to take a moment to pause, reflect and celebrate each other during this time.
Happy Birthday John, we wish you all the very best!
With Valentines day just around the corner it is good to reflect on the love and support our Peer support group have given in the past year. Members have been meeting every week on Zoom instead of monthly to offer support throughout the good times and bad. They have been writing letters, sending photos and phoning each other to stay connected for those who are unable to join zooms.
In more recent weeks we have opened our doors to other members of the DEEP network to work on our most current project ‘The pros and cons of living with dementia during COVID-19.’ These subgroup meetings are going well and are due to meet next month
The BJF Peer support group are keen to meet medical students from the local Keele University in the coming weeks. There will be 4 sessions in 2 days spending 4 hours with the students. They will be working along side 17 students in total to raise awareness of dementia and to be on hand to answer any questions that the students have.
Keep your eyes peeled for updated on all the exciting projects we are involved with!
We’re DEEPly grateful for our DEEP support network, we cross pollinated and ended up with 18 participants to our open Peer Support Group meeting on Friday 22nd January.
This meeting was facilitated by people living with dementia sharing and comparing their experiences and dementia pathways with each other around the country. It was interesting to note how each person diagnosed with dementia had a different review period (between 3-12 months) yet not one of them had regular review meetings with their GP. The only participant within the 18 who had regular reviews was from across the pond in Canada. This was a very interesting meeting with action points needed to be taken onboard.
We will be back to our smaller Peer Support Group this week to check in with each other on a smaller level. Members mentioned how valuable opening our doors is, and would like to continue to do this on a regular basis inviting guests from across the DEEP network.
The peer support given in this meeting was incomparable with participants at different points in their pathway they were able to support those who were in their early stages. Several members commented how they feel more comfortable opening up to people with similar experiences, living with dementia. The importance of peer support is echoed throughout the country. We have extended our current project to all of our guests to make sure we get a range of perspectives with no boundaries on towns, counties or even countries!
15/01/21 DEEP network guests
<p class="has-drop-cap" value="<amp-fit-text layout="fixed-height" min-font-size="6" max-font-size="72" height="80">Our Beth Johnson Foundation Peer Support Group has opened its doors to different guests throughout the DEEP network to join our weekly meetings. One of the benefits of Zooming is getting to meet people from all over the world without the jet lag. Our Beth Johnson Foundation Peer Support Group has opened its doors to different guests throughout the DEEP network to join our weekly meetings. One of the benefits of Zooming is getting to meet people from all over the world without the jet lag.
In today’s meeting we had Joy, Wayne from Kent and Bill all the way from Canada to share, talk and be a part of essential peer support. We also had a guest from the Alzheimer’s Society Veronica who has an interest in the value to peer support groups to join us and ask questions about how we work.
If you’re a regular blog post reader you’ll know we are working on a new project for the DEEP network relating to COVID and Dementia – we’re lucky enough to have our guests on board with this project and they will be joining our sub-group meetings in the future, how exciting!
Happy New Year to all. It was our first meeting back after the unusual festive period and the first of 2021. We after some time catching up and our usual meeting agenda we have some exciting projects on the horizon. So keep your eyes peeled for updates regarding those.
Being a part of the DEEP network comes with a lot of benefits but one we are most grateful for is the support from members across the country. We are opening up our usual weekly meetings to other members to get involved! Over the coming weeks we have visitors from near and far, we’re looking forward to it!
We all wish you a very Happy New Year and a promising 2021 with meeting up hopefully in the close future.
2020 has been a very unusual year for everyone but here at the Beth Johnson Foundation Peer Support group we definitely haven’t let it stop us. A little overview of everything we have achieved during 2020 and a promising outlook for 2021.
At the start of the year we had a new Project Co-ordinator Laura, who due to COVID-19 has been with the Foundation for 10 months now and still has never met most of our members in person. This did not stop them from giving her the warmest welcome to the group. We had our first ever virtual Zoom meeting on April 27th 2020 and it was all go from there! We decided to meet bi-weekly instead of monthly to keep in touch and share experiences during these strange times. We quickly put together out Top Tips and Tricks on living well with dementia during lockdown, which sharing with the world allowed others to use them and hopefully make a difference.
June soon flew round and the group felt they needed more time to discuss all the topics that were coming up in the zoom meetings. Together we decided to now meet every week on a Friday at 11am, ‘It’s like going the pub with your mates and having a good chat but without buying the weekly round?! In June we also had our film premier with Bigger House and the DEEP network which showcased member’s individual films made about their pathway with dementia. Meeting members of the network all over the UK and being a part of our biggest Zoom meeting with over 40 members!
Did you hear the new name for the month of September? Our group wrote letters, send photos, created social media platforms to stay connected to each other. We questioned the governments saying of ‘Social Distancing’ while respecting its attributes of course. We thought how can it be we are social distancing when we are being more social than ever with new members joining us, existing members overcoming technology issues and joining the group online? We may be physically distanced in Social September but definitely not socially distanced!
October and November provided us with the Arts! We reminisced through the use of childhood photos and mischievous stories about miniskirts to bell bottoms, fresh perms to kiss-curls, need we say more?! We also had performances on Zoom from B Arts telephone theatre and a Story Telling virtual workshop.
With us half way through December – we were guilty of celebrating early this year with Festive Fridays taking place from the 4th of December onwards! This will continue throughout the month to brighten up these dark days, both in relation to daylight and recent events. Building a strong peer support group has helped each individual tackle personal hurdles and overcome problems as a whole group.
We would like to wish everyone a very merry Christmas and a prosperous New Year. We are looking promising into the future to meet again, raise a glass and appreciate the little things again.
What a busy morning we have had! We had the pleasure of being joined by two guests from other DEEP Groups Julie and Stephen. They had a taster of what our BJF Peer Support Group gets up to in our Zoom sessions, we’ll leave the judgement up to them!
This week we had a 10 minute demonstration of EFT (Emotional Freedom Tapping) by our member Sue. We focused on reducing chocolate cravings, a brave and difficult choice if we do say so.. This technique she shared has helped her deal with a whole range of emotions including anxiety. The session was shared in hope that it might help others during this stressful time – thankyou Sue!
We have a busy December ahead of us joining other groups, attending new activities and Zoom parties all round. Keep your eyes peeled.
