The Esme Room Support Group.
Esme’s Umbrella (www.charlesbonnetsyndrome.uk) is the UK’s campaign to raise awareness of Charles Bonnet Syndrome. This condition has been a well-kept secret for too long and people with sight loss have been living in silence, afraid to confide in anyone in case the vivid, silent, visual hallucinations are caused by a mental health condition. Too few ophthalmologists were warning their patients that CBS might develop – it might not, but forewarned would be forearmed.
Launched by Judith Potts in 2015 – named in memory of her Mother, for whom CBS plagued her final years – it became clear very quickly from the numerous calls to the Helpline (0345 051 3925 – answered by The Help and Information Service 24 hours a day, every day) that, not only was it imperative to raise awareness within the medical profession and out into the community plus funds for research, but proper support was needed for people living with CBS, their families and friends.
Following on from the announcement of a researcher (thanks to the financial support of The Pocklington Trust and Fight for Sight) – Dr Greg Elder of Newcastle University – who will work with Dr Dominic ffytche of King’s London (the sole, globally-acknowledged expert in CBS and Medical Adviser to Esme’s Umbrella) and Dr John-Paul Taylor, also at Newcastle – Judith is now looking at providing support groups. On the first-ever Charles Bonnet Awareness Day last year, the Pocklington Trust – in its guise as SELVIS – hosted an event, at which Dr ffytche and Judith heard from over 40 people living with CBS, who talked about the sort of support they would like and how much they would enjoy the chance to exchange CBS experiences and coping strategies with others in the same boat.
Judith’s plan for 2018 is to ask all the local sight loss charities – or any other organisations who might be willing to donate room-time – to find a room to be used as a regular meeting place for people living with CBS, their families and friends. Initially, this would be just a question of providing tea, coffee and the odd biscuit – or ask people to bring something home-made with them – but, eventually, to offer professional advice in the form of an ‘experienced-in-CBS nurse’, counsellors and complementary therapists who could help with relaxation techniques. Judith hopes that she can establish a network of counsellors and therapists who would offer a couple of free sessions first, with subsequent appointments at a reduced price.
The room and support group would be called The Esme Room Support Group.
Please email Judith on email@example.com if you can host a group or have any ideas or suggestions. Judith believes strongly that, with the right publicity, these groups will encourage more people with CBS to confide in others and find the support – particularly the peer-support – that they need. Dr Mike Burdon, President of The Royal College of Ophthalmologists and his CEO, Kathy Evans, will be encouraging their members to give a warning about CBS to all patients. This is wonderful news but will mean that there will be many more people in need of this sort of support – and a visit to an Esme Room might just be the start of a new coping strategy.