Esme's Umbrella Patient Day

WORLD’S FIRST CHARLES BONNET SYNDROME PATIENT DAY

Held at Moorfields Eye Hospital NHS Foundation Trust on 16^th November 2018 to coincide with the official Charles Bonnet Syndrome Awareness Day

Delegates included: Patients, CBS researchers, ophthalmologists, statisticians, eye clinic liaison officers, rehabilitation officers for the visually impaired, representatives of eye charities, medical students and other interested parties.

Patient Day supported by: Retina UK, Fight for Sight, National Eye Research Centre, Thomas Pocklington Trust, Blind Veterans, International Glaucoma Association, RNIB, OrCam, London Vision, Macular Society.

Speakers:

Judith Potts – Founder of Esme’s Umbrella

Dr Dominic ffytche BSc MBBS MD MRCP MRCPsych - Reader in Visual Psychiatry at King’s London and Medical Adviser to Esme’s Umbrella

Dr Mariya Moosajee MBBS BSc(Hons) PhD FRCOphth – Consultant Ophthalmologist at Moorfields Eye Hospital/Great Ormond Street Children’s Hospital and Clinical Scientist at UCL Institute of Ophthalmology

Dr John Paul Taylor MBBS(Hons) PhD MRCPsych– Senior Clinical Lecturer, Institute of Neuroscience, Honorary Consultant in Old Age Psychiatry for Northumberland, Tyne and Wear NHS Trust. Researcher in CBS at Newcastle University, investigating whether or no non-invasive brain stimulation can be used as a therapy for visual hallucinations in eye disease.

Kat da Silva Morgan – PhD researcher working with Dr Greg Elder MA(Hons) MRes PhD CPsychol (for Esme’s Umbrella) at Newcastle University, researching the causes of CBS and its relationship with over-activity in the brain. Identifying the difference between the brain of someone with sight loss and CBS and someone with sight loss who does not develop CBS.

CBS Patient Day 16 November 2018

Speakers:

Elizabeth Baio – Patient with guide dog, Yazmin

Dr Amit Patel – Patient with guide dog, Kika

Discussion groups:

Coping strategies for CBS. Adding to those already on the website.

Personal and professional experiences of CBS.

Patient Day Research – Results will be published in due course

Dr Mariya Moosajee’s team – Patient Reported Outcome and Experience Measure.

Dr Dominic ffytche’s team – questionnaire to add to the SHAPED project (visual hallucinations in CBS, Parkinson’s and Lewy Body Dementia)

Outcomes

1. Much more education and awareness of CBS is needed, both within the healthcare profession and out into the community.

2. Targets in healthcare: GPs, hospital doctors, nurses, optometrists, opticians, orthoptists, healthcare assistants, care homes, carers.

3. Raising awareness in the community through local low vision charities, community centres and organisations.

4. Continuing to persuade ophthalmologists to warn their patients that CBS might develop. Add CBS to the CVI which they sign.

5. Raising awareness through the media.

6. Approach should be made to the Royal College of Nursing to train specialist nurses in CBS.

7. Funding more research. Finding money and researchers interested in CBS.

8. Funding Consultants in CBS to be able to refer patients.

9. Working with Guide Dogs UK and other charities to collect social data.

10. Establishing a proper pathway for diagnosis, treatment and care.

Patient Experiences

Elizabeth Baio described how she first began to have episodes of CBS when she was a child. She was frightened and did not understand what was happening to her. Over the years, the hallucinations have lessened in number but still sometimes occur. She sees figures, grotesque faces and kaleidoscope patterns.

Dr Amit Patel described the terror he feels during his CBS episodes. He sees a girl dressed in white with blood pouring from her face multiple times a day and is comforted by his guide dog, Kika.

Both Elizabeth and Amit confirmed how CBS both distresses, demoralises and exhausts people who develop the condition and how it interferes with everyday life – despite both being aware that what is seen is not real.

The CBS research work of Dr Greg Elder, Kat da Silva Morgan and Dr John-Paul Taylor

The VISMAC study is a research collaboration taking place between Newcastle University and King's College London which aims to investigate the origins of Charles Bonnet syndrome in the brain and whether non-invasive brain stimulation can be used to help treat visual hallucinations. So far, the study has found tentative evidence that non-invasive brain stimulation may help certain aspects of hallucinations and visual function in some people. However, it is important that we test this as part of a properly controlled trial. The study is currently recruiting participants to the controlled study in Newcastle, which involves participants receiving four consecutive days of stimulation on two weeks, with one week consisting of real stimulation and another week consisting of placebo stimulation. In addition, the study is collecting information about activity in the brains of people both with and without Charles Bonnet syndrome, which will provide much needed information about how visual hallucinations arise in eye disease.'

JUDITH POTTS – Founder of Esme’s Umbrella