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.*
#DementiaActionWeek Day 5!At the end of a fantastic Dementia Action Week 2021, some members of our The Beth Johnson Foundation Peer Support Group were able to finally get together for a long awaited and well deserved coffee and cake!Hopefully the various posts we have shared on our BJF Dementia Advocacy page shows how well you can live with dementia and the importance of Peer Support!
This week is ‘#DementiaActionWeek and the theme for this year is “Stand up for your loved ones with Dementia”. The Clinical Commissioning Groups (CCG’s) in Stoke and North Staffs are two of only a handful of CCG’S across England who actually fund #DementiaAdvocates recognising that #DementiaAdvocacy is a specialist type of advocacy. This means that anyone living in Stoke and North Staffs unlike other areas are able to access a Dementia Advocate if required. Here at The Beth Johnson Foundation we think that these two CCG’s should be acknowledged for their recognition in the need to fund specialist dementia advocates to support people living with dementia. If this is something you or someone you know need please contact: firstname.lastname@example.org. It is difficult due to our client group to gain first hand comments concerning the service we offer but below is a comment we received from the daughter of someone we supported:
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.email@example.com 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!