Lisa welcomed everyone and also Mike Rich CEO of Barnet Carers, Valerie and Dr Angela our Trustees, Andrew – who delivers our seminars and is also ‘Community Development Manager’ at Carlton Court Care Home and also Marcello the Manager of Christies Care Agency.
Lisa started with informing everyone about the special event on Friday 11th June at 2pm to 3pm which is during Carers week and also informed everyone that Theresa Villiers MP will also be joining us. At this point Lisa asked Mike if he had any other updates. Mike mentioned the important role carers have in the community. We have 20,000 carers in Barnet.
Mike also mentioned that there was a zoom event next Tuesday 15th June at 2pm to 3pm. The Royal Free Hospital Foundation Trust is determined to improve the experience of carers and those they care for. As part of this improvement programme, they are looking for the experience and opinions of carers who have used one of the hospitals in the group - The Royal Free, Barnet and Chase Farm Hospitals. If you would like to join then please click on the link below provided by Mike and you will then be sent another link on the morning of the meeting.
https://www.eventbrite.co.uk/e/carers-at-the-royal-free-hospital-trust-tickets-158591111283
Lisa then mentioned about the recent news regarding Aducanumab – a drug that targets cause rather than symptoms of Alzheimer’s disease. This was in the news a few years ago but was unfortunately not successful in the trials. The drug tries to breakdown the plaque that build up in patients’ brains in early onset Alzheimer’s disease. It has been approved in the US and hopefully this will also be approved and used in the UK soon. Lisa then mentioned that Stephen had a 4 minute video about Aducanumab and also shows Stephen and his wife Brenda being interviewed by the Science Editor. Stephen and Brenda have volunteered to enter in clinical trials before and you can read about this on our website. Here is the video link below to watch;
It was now time for Andrew’s seminar and today’s topic was “People Handling” Andrew presented his slides discussing the importance of making sure any manual handling is done safely without injuring our backs. Andrew showed some pictures of our spine and the talked about the mechanics of how the spine works and how it can be injured. Andrew then showed a 4-minute video called ‘Child’s Play’ which showed how children instinctively knew the correct ways of lifting but when we grow up into adults we unfortunately get into bad habits and lift incorrectly. It was a very interesting video. Please see link of the Child’s Play video below;
There were a few questions after Andrew’s seminar and Lisa also went round asking everyone individually if they had any other matters to discuss. Lisa also mentioned that in her recent meeting at the council’s Adults and Safeguarding Committee, officers mentioned that people would no longer be just able to just turn up at the Finchley Memorial Hospital for non-urgent treatment. They would need to book an appointment by calling 111 or through their GP. Their aim is to reduce the pressures in the A&E hospitals. Lisa spoke at the committee stating that this would not work and people would end up going to the A&E hospitals for treatment. This would impact the A&E hospitals and add more pressure as people would find it difficult making appointments. Lisa received unanimous support Cross Party and the Chairman instructed officers to ask the Director of Public Health to email Lisa and discuss further.
Andrew then mentioned about a very good pillow that would assist someone who has fallen on the floor to safely get up again. Please see the link below for the pillow;
A member mentioned that she has tried to obtain the ‘Age UK Life Book’ but has been having problems. Lisa said that she would email Helen Newman CEO of Age UK Barnet and will hopefully provide a response at the next carers group meeting.
‘AGE UK LIFE BOOK’ can now be downloaded. It is now downloadable and printable so there’s no longer a need to send away for it. Lisa has done a bulk order and will hopefully get some hardcopies sent to her.
https://www.ageuk.org.uk/information-advice/money-legal/end-of-life-planning/lifebook/
Lisa then mentioned that at her doctor’s surgery, she saw on the noticeboard a notice about ‘Do you want your medical records to stay confidential to this practice, or to be downloaded to the NHS central record system (NHS “Spine”)? ‘This prompted a discussion following on from last week’s carers group meeting about NHS APPS and whether we should be concerned about our personal details being sold to other organisations. The notice in the doctor’s surgery explains how you can complete and sign an Opt-Out form or do nothing. Please see Opt-Out Form attached to this email and see other links below.
See Guardian article - Your medical records are about to be given away. As GPs, we’re fighting ...
https://www.theguardian.com/commentisfree/2021/jun/03/gp-nhs-digital-data-patients-records-england
How to opt out:
https://medconfidential.org/how-to-opt-out/
Make your choice. Choose if data from your health records is shared for research and planning:
https://www.nhs.uk/your-nhs-data-matters/manage-your-choice/
Updates
As from Monday 14th June, I will be changing the program slightly. Monday, Tuesday and Wednesday zoom sessions will start - At 2pm everyone joins the session for the chat and then at 2.30pm the Karaoke will start until 3pm. The rest of the programme stays the same. (A new poster will be on the website to confirm these changes).
- Please note there are NO AFTERNOON SESSIONS on Monday 28th June, Tuesday 29th June and Wednesday 30th June
- The Carers Group Meeting however on Tuesday 29th June will still go ahead and will be run by Keren and Mark on this day
- Depending on what the Prime Minister announces soon, if all restrictions are lifted then our first face to face dementia club session will be on;
- Wednesday 7th July at the Finchley Memorial Hospital at 2pm to 4pm and WEEKLY thereafter.
- More sessions and venues will start as we return to normal. I will keep you informed.
- Please also note in your diaries the Dementia Club UK reunion party on;
- Monday 26th July at the Friends in Need ‘FIN’ community centre East Barnet Baptist Church Crescent Road, Barnet EN4 8PS at 2pm to 4pm
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We had 22 members today. The Karaoke session started at 2pm as usual and then the chat session followed at 2.30pm. Lisa welcomed everyone and reminded them about the special event on Friday 11th June at 2pm to 3pm during Carers week.
Ian James then joined us for the music entertainment which is great fun and everyone loves to sing-a-long. Rachel then joined for the exercise/dance session which again everyone enjoys learning new dance moves. Kevin one of the carers then had a picture quiz for everyone to name 10 famous people who committed crimes. Everyone not only had to name the people but also what crime they committed. Stephen and Brenda and peter got the highest score with 17 out of 20 followed by Pam and John with 16. Lisa then called out the Bingo numbers and there were 2 winners today – Marina and Andreas and Jo, Grazia and Enzo.
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We had 16 members today. The Karaoke session started at 2pm followed with the chat time. Lisa welcomed everyone and asked each of the members how their weekend was. There was various chats especially about different film and TV series. One of the carers mentioned that her first cousin’s friend was an American astronaut, and he came to visit bringing a piece of moon rock as a souvenir. James Irwin served as Apollo Lunar Module pilot for Apollo 15. He was the 8th person to walk on the Moon and sadly was the first and youngest of those astronauts to die. Everyone was very interested to hear this and also thought how wonderful to have a piece of Moon rock.
James Le Bec and Joy then joined us as Katie our usual music entertainer was away today. James sang a variety of songs getting everyone to sing-a-long. The session then continued with Eon Walters with the exercises. It was rather warm today so everyone worked a bit of a sweat.
Lisa then did a quiz with everyone. As it will be HM Queen’s official birthday on Saturday 12th June, Lisa had a few quiz questions about the Queen. Everyone thought they were a bit hard but they like the challenge. Lisa then called out the Bingo numbers and today’s winners were Peter and John and Audrey.
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We had 18 members today. The Karaoke session started at 2pm and then the chat session followed at 2.30pm. We had a new members today and Lisa made sure to introduce her to other members and encouraged a chat to help her feel relaxed and comfortable. James Le Bec then joined us for the music entertainment and sang a few songs to start with. Lisa asked James to sing if possible a jazz song as the new lady liked jazz. Lisa then also asked James to sing happy birthday to Joan whose birthday was tomorrow. Everybody sang together and Joan was very grateful.
The music quiz today was naming comedians and actors. It wasn’t easy but everyone enjoys the challenge. The winners were Brenda and Stephen, Pam and John and Jackie and Joan. James then asked members to name 10 types of trees for extra points. James finished off the session with a medley of 60’s songs which everyone enjoyed singing along and ended up singing – ‘You are my Sunshine’.
Richard Kravetz then joined us for the Yoga exercises which everyone always enjoys. Today Richard was also instructing members how to take deep breaths to cool down in the heat. It involved sticking their tongues out and knowing how to curl the tongue which was not easy for everyone. Richard then continued with his quiz and today’s quiz was about biscuits. The winner was Jackie and Joan and Pam and John with all the correct answers.
Lisa then called out the Bingo numbers and todays winner was Joan (the birthday girl)
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Lisa welcomed everyone and passed on Andrew’s apologies as he was studying for an exam. Lisa did however discuss with Andrew about next week’s seminar and Andrew suggested ‘Moving & Handling’ as many of us carers have to sometimes move our loved ones and if we don’t do it the right way we could end up injuring ourselves. A few carers also mentioned that they would like Andrew if possible to do a talk seminar about ‘coping with sleep disturbance’.
Lisa said that she would pass that on to Andrew. Lisa also informed members that Andrew will try and prepare for next week the step-by-step guide on ‘Sanctuary Meditation’ which he presented in a previous carers group seminar.
Lisa then went around each member to ask them if they had anything they liked to raise at the meeting to discuss. The following topics were discussed;
1 - Statins – one of the members reported that they had very bad side effects with Simvastatin. Dr Angela (also one of our Trustees responded informing of the benefits of taking the Statins which prevent other more complicated illnesses. Dr Angela has also provided the following link which assesses what your risk score is;
https://www.cvdcheck.org.au/your-risk-score
Other members also reported similar side effects and other types of statins.
Types of statins
- atorvastatin (Lipitor)
- fluvastatin (Lescol)
- pravastatin (Lipostat)
- rosuvastatin (Crestor)
- simvastatin (Zocor)
2 - Another member mentioned how she was so pleased to see that there was ‘assistance facility’ offered at train stations. This was very useful especially for people who needed help with their luggage or to be escorted to the right platform.
Other discussions followed about sunflower lanyards. People with hidden conditions can ask for special sunflower lanyards. These are bright green in colour and allow staff at supermarkets, train stations, airports etc to easily and discreetly identify passengers who may need extra assistance. These are free in large stores at customer services and you don’t need to show proof of disability.
There were also talks about other types of assistance called ICEtags. It holds vital information about you and this can be attached to your key ring, clothes etc.
Lisa said that she would look into these and try to purchase these for when we go back to venues
3 - Another member mentioned about something she had read about a clinical trial on a dementia drug called Aducanumab.
Aducanumab, a new drug developed by Biogen for treatment of cognitive and functional decline in early Alzheimer's disease, is under review by the Federal Drug Administration (FDA). A decision is anticipated by June 7, 2021. This drug may be launched in 2022 depending on further clinical trials.
Doctor Angela informed everyone that there was another drug called Donanemab which is similar but may have less side effects. Here is the link for further information: https://www.nejm.org/doi/full/10.1056/NEJMoa2100708
There were further discussions from other members on clinical trials especially as one of the members had already taken part in clinical trials and informed members that if anyone wanted to take part in any clinical trials they should join dementia research. Please follow the link for further information if interested: https://www.alzheimers.org.uk/research/play-your-part/participate-in-research
4 - Another member mentioned that GP practices were being taken over by private companies called Centene. Doctor Angela has provided this link;
https://weownit.org.uk/blog/here-are-gp-practices-taken-over-us-health-insurance-giant-centene
Centene control 58 GP surgeries across the UK – see link with list of all the surgeries taken over:
https://weownit.org.uk/blog/here-are-gp-practices-taken-over-us-health-insurance-giant-centene
5 - Lastly – as one of the members were unable to join the meeting this evening, he wanted to let everyone know about ‘Message in a bottle’
Message in a bottle is where you keep essential personal and medication details in a small bottle in the fridge. Paramedics, police, fire fighters and social services know to look in the fridge when they see the Message in a Bottle stickers. There are 2 stickers to display one on the inside of the front door or the main entrance to your home and the other is for your fridge door. These bottles are free of charge and can be obtained from your GP or local chemist.
6 - Another member mentioned about the dangers of the NHS APP - what further information is held on an individual in addition to the vaccines information. Please see this link to YouTube "Talk Radio" discussing the dangers of the new NHS app and its privacy settings. This App stores a lot more information than just your vaccine status. ID card by back door.
Lisa thanked Doctor Angela for providing responses to members regarding medical issues and the meeting ended at 8.45pm.
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