October 15 - Charles Bonnet Syndrome: raising awareness with Judith Potts

Today our guest on the Ostrich blog is Judith Potts who is currently fighting to raise awareness of a dreadful condition, the Charles Bonnet Syndrome. Judith Potts was an actress and is now a voice, acting and presentation coach. She is married with two children, three stepchildren and is the proud grandmother to two grandsons. She was diagnosed with breast cancer in 2008.
She writes a regular Health Blog for The Telegraph and can be contacted at [email protected] or on Twitter @JudithPotts

How it all began

“I do wish these people would get off my sofa.”

With these words my Mother suddenly began to confide that, during the past year, she had begun to see “visions” - as she went on to describe them.

“But Mum, there is no-one there.” I said - immediately beginning to suspect the onset of dementia.

“They do go when I tap them on their heads or shoulders.” she explained, “but then they come back.”

My Mother was a sprightly, independent, 93 year old who lived on her own and was managing very well. Some years before, her eyesight had begun to fail – due to macular disease and glaucoma – but, with large print books and a magnifying glass for the newspaper, she was still able to read and complete the Telegraph crossword.

Discovering the Charles Bonnet Syndrome

I said nothing about my suspicion and drove home. Picking up the newspaper later that day, I came across an article about something called The Charles Bonnet Syndrome – and realised that the description of the condition matched exactly that which my Mother was experiencing.

Returning to see her the next day, I asked her more about her “visions” and was horrified to learn that the people on her sofa were faceless; goblin or gargoyle-like creatures appeared on tables or by her side, swerving to avoid her sweeping hand; a small, unhappy Lilliputian child made frequent appearances and, sometimes, whole scenes took over from reality.  

The Charles Bonnet Syndrome occurs in some people – not everyone – when about 60% of their eyesight is lost. The simple explanation is that we see with our brains through our eyes. When the sight is lost or failing, the brain uses its stored images to fill in the blank spaces. These images can be from books, films, plays or real life – and at the age of 93 there were hundreds of thousands of images waiting to be resurrected.

Why don't all ophthalmologists mention the Charles Bonnet Syndrome?

Why – I wondered – had my Mother’s Ophthalmologist not warned us that this might happen? I made a call to his office but he refused to speak to me; I wrote him a letter, which he would not answer; I made a formal complaint to the hospital, which never received the proper attention. By this time I was angry and upset. Watching my Mother suffer, with no way to help, was heartbreaking.

I checked with the College of Ophthalmologists, and was told that The College recommends that all its members must explain to their patients about the Charles Bonnet Syndrome – but the recommendation is not enforceable. Finally I received a reply from the Ophthalmologist, who informed me that he would not be abiding by the College’s recommendation - and that was his clinical decision. He gave no reasons.

On my Mother’s next appointment with him, he sent his colleague. I continued the questions – to no avail. His colleague gave me no advice either as to how to cope with the condition, even suggesting that it was just a question of ignoring the “visions”.

There was a deliberate lack of a doctor’s “duty of care” and it had given my Mother a terrifying year. At that time her fear was not of the “visions” but of losing her sanity.

As time went on, Mum experienced more and more “visions”. One day she described, in perfect detail, watching an Edwardian funeral, complete with plumed horses, carriages and the clergy in red cassocks.

The difficulty to find coping mechanisms

Desperate to help her, I applied myself to finding coping mechanisms, but, at the age of 93 it is not possible to follow the suggested “jumping up and running round the room” to “kick the brain into another gear”!  The medication which can be used, comes in the form of antipsychotic drugs, but is not recommended for people in their nineties – so she just had to live with it.

Occasionally she found that drumming her fingers on the table, blinking fast or moving her eyes from side to side dispelled a “vision” or, better still, stopped it in its tracks. As she grew older, the “visions” became more and more difficult for her to bear and her distress was evident.

Understanding and researching the condition with the Macular Disease Society and Dominic Ffytche

There is but one person in the UK who understands the condition and researches it - Dominic Ffytche from the Department of Neuroscience at King’s College, London.

Mr. Ffytche spoke at the Macular Disease Society’s conference in London last year and welcomed the charity’s campaign, to raise the profile of the Syndrome. He acknowledged that very few doctors understand – or have even heard of – the Syndrome. Indeed, my own GP and my Mother’s both confessed to falling into that category – along with my Mother’s very embarrassed optician. The latter’s lack of knowledge was extraordinary - although he became extremely interested when I gave him the results of all my research.

Those who develop the Syndrome often speak of being plagued by grids, checkerboards, lattices, detailed brickwork, colours, moving carpets or floors. For many people the “visions”, or to use their real name, “Visual Disturbances”, disappear after 18 months. For others, like my Mother, the “visions” were of people, characters and scenes and they remained real and with her to the end of her life.

If you or a family member suspects the presence of the Syndrome, look at The Macular Society’s website and print off its leaflet about the condition. Take this with you to the GP.  

It is vital to remember that The Charles Bonnet Syndrome must not be confused with dementia – the sufferer does not lose his or her health, memory or judgement. It is appalling that, with a suggested figure of 2 million people suffering from this condition, there are still ophthalmologists – not just in the UK - who refuse to acknowledge its existence, let alone warn their patients.

Quite why the Charles Bonnet Syndrome is such a closely guarded secret, is a total mystery – not only to me but, more importantly, to all those who have suffered in silence and fear for far too long - or, worse still, been misdiagnosed.