JUDITH’S UPDATE FOR JULY 2017



July 2017 is a very significant month for Esme’s Umbrella. Fight for Sight and the Pocklington Trust – in conjunction with us – have put out a call for a researcher under Fight for Sight’s Small Grants Scheme. Please pass on this information to anyone you meet in the ophthalmic world. No specific area of work has been identified, which leaves it up to the researcher to choose the angle. I am enormously excited and am keeping my fingers tightly crossed that someone will answer the call. There is wide scope for research - for a start, we have no basic data. How many people in the UK have the condition; why some people see benign images of flowers and smiling Tibetan monks, while others are terrified by fire, strangers in the house or pit bull terriers; and why some people with vision loss never develop CBS? I have tweeted the call – on both my Twitter accounts – and have put in on Facebook. Please spread the word too.

You all know, only too well, the despair and distress the condition causes. Since my Helpline opened, I have spoken to hundreds of people for whom the loss of sight was difficult enough, but whose quality of life had taken a further nose-dive as CBS developed. I understand well the frustration of Eye Clinic Liaison Officers and Rehabilitation Officers for the Visually Impaired at not being able to wave the magic wand of medication. However, callers tell me that the coping strategies carried on the website do help.

Reassurance is the obvious one, because once a sufferer can believe that the hallucinations are not a precursor to dementia, spirits are raised, but convincing the GP – and some family and friends too - is often a very different matter. I am ready to email our explanatory leaflet directly to the GP, or to talk to family members or friends about the condition. Sometimes it is simply a case of assuring them that CBS is a ‘real’ condition. I hope that the video about CBS – commissioned for us by TH&IS and made by NHS Film Unit/Health and Care Videos – will be bought by all NHS Trusts and played on the screens in the ophthalmology clinics or GPs’ practices.

Some people use art as a therapy to cope with the hallucinations. Arthur Ellis – whose free time was always spent painting, sculpting or drawing - contracted bacterial meningitis at the age of 59. He lost all his sight, his balance was severely affected, he spent nine months in hospital and CBS developed. Arthur told me that “A quick-thinking nurse found a link on the internet and it was she who diagnosed CBS. Subsequently, my sons searched the internet for more information.”

I asked Arthur – now aged 70 - to describe what he sees. He said: “I see interiors and exteriors working together, human beings, animals, objects like a sofa or a plant – and then, suddenly, we could be outside. I don’t see anything malicious or scary now – but at the beginning I constantly felt like I was sitting on the edge of a precipice with rocks and sea beneath me.”

Arthur explained that painting the hallucinations “helps to make sense of them; to escape and download them – for a moment, at least.”

I asked which coping strategies he uses. He said: “I stay calm. At first, I moved to a different room, but now that makes no difference. The impact of the hallucination changes with my mood and time helps in dealing with them.”

Arthur has, very kindly, allowed me to use some of his pictures here on the website.

If anyone else uses one of the creative arts to help ease life with CBS, please let me know – email me or call the Helpline – 0345 051 3925. I am collecting all sorts of ‘case studies’ for Charles Bonnet/Esme’s Umbrella Awareness Day on 16th November.

Many ECLOs and ROVIs will be marking the day in some way – I have heard about cakes being baked, umbrella biscuits being made and eaten whilst round-table discussions take place. Any ideas to ensure #CharlesBonnetDay produces some very positive outcomes would be extremely welcome.

I would like to know what you all – the whole CBS community, which comprises everyone for whom CBS is a factor in their lives (doctors, nurses, people who live with the condition etc.) – need to be able to cope better with CBS. How does it impact on your lives? Have you stopped reading because giant spiders climb out of your book? Can you not watch your favourite television programme because there is always a figure standing in the way? Do you dread your meals because the food appears to be covered in writhing worms? What does CBS prevent you from doing? What specific support do you need? Would you like support groups? Telephone support? What do family and friends need? Please let me know, so we can begin to put it all in place.

Thank you for all your support.

Judith