Carers zoom meeting – 1st June 2021

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.