Launching Esme’s Network of CBS Support Groups, First CBS Champions’ Conference and a request for Data Collection for adult and paediatric research
sme’s Umbrella logo – For everyone working for the greater awareness of Charles Bonnet Syndrome
As Autumn arrived, Esme’s Umbrella’s recent webinar and discussion “Charles Bonnet Syndrome (CBS): Awareness, Support, and Opportunities to Collaborate” – hosted by the wonderful Amy Pearman – enjoyed a great session.
We were joined by representatives of charities from north and south of the border, some of whom just wanted to update themselves on any new CBS facts or figures, while others were extremely interested in growing the number of CBS Champions and collecting much-needed data. Then came the idea of an Esme’s Network (much easier than Esme’s Friends’ Support Groups’ Network!), which was brilliant and – thanks to Amy – will be put into action.
We discussed three ways forward.
1. ‘Esme’s Network’ of support groups
Peer support works every time and the request to create a proper network of the Esme’s Friends’ CBS support groups (or, for some charities, just ‘CBS Support Groups’) was a great idea. Meeting three times a year – online, via Visionary – will give the facilitators of these groups the opportunity to exchange ideas and discover how their peers run their individual groups.
I would be so grateful if many more charities started a CBS support group. I am asked all the time for local groups but, since COVID, so many have dropped away. If you would like to start one, please email me, Judith Potts (opens email) or email Luke (opens email).
2. Vital data for research
Several people reported that children who attend support groups are talking about ‘seeing things which aren’t there’. This sparked a discussion on collection of data. We are only in the foothills of CBS paediatric research and data is vital.
If you could collect adult and paediatric data for us, that would be absolutely fantastic. All we need is the age, the eye condition, how long they have had CBS and what they see. Please send the results to me and I will pass them on to the various researchers.
Thank you very much.
3. CBS Champions and Friends – event Moorfields 14 November
Esme’s Umbrella is delighted with the number of healthcare professionals and sensory service officers who have become CBS Champions – but (there is always a ‘but’!) we need many more. My aim is to have one in each charity. I cannot spread myself any more thinly and desperately need local people who will be an Esme’s Friend to anyone needing a bit of reassurance or explanation.
We are holding a Champions’ Information Day at Moorfields on Saturday 14th November (to mark CBS Day on 16th) and we would be thrilled if we could swell the numbers by then.
Professor Dominic ffytche has edited Dr Jin Zi’s Q and A for Champions, which can be constantly updated so that you would always have new information. This will be launched at the event.
If you would like to join the network of CBS Champions, please or email Luke (opens email).
Support for Young People and Children
Groups for these ages are needed too and they will be next on my list. Of course, they will be more complicated to set up but perhaps Look UK and The Royal Society for Blind Children will have some ideas for us, along with the experts already working in the charities and sensory services?
Thank you again to Amy and everyone who joined us. When I feel my age, it is a meeting like this one – with all the energy and enthusiasm – which sets me back on my feet.
Judith Potts – Founder of Esme’s Umbrella
Ends
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