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Charles Bonnet syndrome

An estimated 2 million people in the UK repeatedly see things that are not there - experiences referred to as visual hallucinations. The hallucinations can range from simple patterns and colours to grotesque disembodied faces, bizarre figures in elaborate costume, nonsense text and letter strings and extended landscape scenes.

They occur in several clinical conditions of which eye disease, Parkinson’s disease, Alzheimer’s disease and other dementias rank highest in terms of the number of people affected and distress caused, both to those having hallucinations themselves and their carers. However, relatively little is known about the symptom or how to treat it.

Now researchers at King’s College London’s Institute of Psychiatry (IoP), in collaboration with the South London and Maudsley NHS Foundation Trust (SLaM) as part of King’s Health Partners Academic Health Sciences Centre, have been awarded £1.9m by the National Institute for Health Research (NIHR) in a Programme Grant for Applied Research into visual hallucinations. The aim is to develop a much-needed evidence base to inform NHS practice in managing and treating the symptoms.

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Dr Dominic ffytche, an expert in visual hallucinations at the IoP at King’s is leading the programme with Professor Robert Howard also at the IoP at King’s. Dr ffytche says: ‘At the moment, no single clinical speciality has an overview of visual hallucinations. Depending on whether the hallucinations are a symptom of Alzheimer’s, Parkinson’s or eye disease, you might be treated by a psychiatrist, neurologist or ophthalmologist, often with very different advice on how to treat the condition.

‘Despite the large numbers of people suffering from these distressing symptoms, there is no clear evidence that any of the treatments actually work. Our aim is to better understand what causes visual hallucinations, identify which treatments work and ultimately, change NHS practice and policy in this area to better meet patient needs.’

The 5 year programme will bring together experts in psychiatry, neurology and ophthalmology from across King’s Health Partners, research teams in universities and NHS trusts in Newcastle, Cambridge, Liverpool and London and patient charities including the Macular Society, Parkinson’s UK, Alzheimer’s Society, Royal National Institute of Blind People and Thomas Pocklington Trust, to provide the comprehensive overview that has been missing until now.

By 2017 a comprehensive set of guidelines on the clinical management of visual hallucinations with be available for both clinicians and patients, as well as an evidence-base from which to plan future NHS services.

See information for individuals with Charles Bonnet Syndrome.

Click here to find out more about recent research funded by the Macular Society.

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