A plea to all the local, regional and national sight loss charities from Judith Potts, Founder of Esme’s Umbrella
Please create your own version of Esme’s Friends – a telephone chat service for people living with Charles Bonnet Syndrome
One of the many results of COVID 19 has been the closure of support groups and this has included the Esme Rooms where people who live with Charles Bonnet Syndrome (CBS) have been meeting to share experiences, exchange coping strategies and enjoy a social gathering.
Mike Bailey from Bradbury Fields/Christopher Grange in Liverpool has come up with a brilliant idea to replace the groups. He has launched an Esme Room telephone chat service for the Liverpool area, called Esme’s Friends. I was delighted to be invited to speak at the last telephone meeting – hosted by Mike – and discovered how positive and powerful it was for people to be able to join in from their own homes, ask questions and receive that all-important reassurance.
We have always known that isolation, stress and fever exacerbate episodes of CBS and, during lockdown, we have had double the number of calls to the Helpline, emails to my inbox and messages on Twitter and to Esme’s Umbrella’s Face Book page. Worryingly, many people have reported that their CBS silent, visual hallucinations have changed from benign to frightening.
There will be more research propositions to announce, but developing day-to-day support for people with CBS is vital too. Even when we are not living under lock-down, the only support available is from Esme’s Umbrella or the telephone, group, counselling service offered by the Macular Society.
My plea is to all the local, regional and national sight loss charities to set up their own Esme’s Friends’ telephone chat service. Inevitably, more people will be able to join in and the group can cover a much wider geographical area – with no travelling involved. It is very easy to do and Mike Bailey will give you all the technical instructions needed.
His email is firstname.lastname@example.org and his number is 07970 290704.
Helpline: 020 7391 3299
Putting the Charles Bonnet Syndrome community centre stage