Charles Bonnet Syndrome Day 2019

PATIENT INFORMATION DAY 2019 a report by Judith Potts, founder of Esme's Umbrella.

The CBS Patient Information Day was held at University College London (UCL) on Saturday 16^th November, to coincide with Charles Bonnet Syndrome (CBS) Awareness Day.

Once again, the Day was deemed to be a huge success and the audience was a perfect mixture of patients and health professionals. Communications Manager, Helen Khan and Eli Jones from NIHR Biomedical Research Centre at Moorfields Eye Hospital NHS Foundation Trust and UCL Institute of Ophthalmology arranged the event – and a huge ‘thank you’ goes to them.

The event was supported by The RNIB, The Thomas Pocklington Trust, The Macular Society, The National Eye Research Centre.

40 people, plus speakers, organisers and exhibitors attended.

Feedback was very positive and appreciative marks were given – the lowest (and only one) being 7/10.

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The event was hosted by Judith Potts, Founder of Esme’s Umbrella and the speakers were

Dr Dominic ffytche, Medical Adviser to Esme’s Umbrella and Reader in Visual Psychiatry at King’s College London;

Kat da Silva Morgan, representing the research team, working in the name of Esme’s Umbrella, at Newcastle University;

Mary Bairstow, a senior optometrist and National Development Manager of Vision UK;

Gayle Barrow from Medical Detection Dogs;

Dr Alex Yeong, Clinical Research Fellow UCL,

Dr Amit Patel (patient) with his guide dog, Kika;

Nina Chesworth (patient).

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Judith Potts introduced the event and announced that:

1. With the help of Dr August Colenbrander in the USA and Professor Andrew Dick in the UK – she had successfully persuaded the World Health Organisation to include CBS in its taxonomy of diseases and conditions – ICD 11.

2. That Dr Mariya Moosajee had been awarded a grant of £15,000 from Thomas Pocklington Trust to undertake a prospective incidence study of CBS in children across the UK. She said “Last year, the RNIB reported that in the UK there were 25,000 children – aged 16 and under – who are registered sight, or severely sight-impaired. This study will have a major impact on raising awareness amongst healthcare professionals and safeguarding the mental health of our children with sight-loss. The study will take approximately 3 years and will kick off in January. Dr Moosajee will update us on the progress this time next year.”

3. Carrying on from the CBS research which has been conducted at Newcastle University, but which is coming to an end, Fight for Sight - which holds her Restricted Fund - has put out a call for another CBS researcher. This will be funded by the money Judith has collected which has been matched by Blind Veterans. We are waiting to find out who and where will be given the grant.

4. The rise in the number of Esme Room Support Groups and how beneficial they are for those who live with CBS - and their caregivers. She mentioned that Sabina and Jessica from Moorfields will be starting a group soon.

5. Next year is 2020 – The Year of Vision. It is also 300 years since the birth of Charles Bonnet and 5 years since the launch of Esme’s Umbrella. Now is the perfect opportunity to place CBS centre stage, which is Judith’s plan with the support of all the sight loss charities – large and small.

6. Congratulations were given to Dr ffytche for being awarded the title of Number One in the world for all types of visual hallucinations.

Dr Dominic ffytche:

1. Explained CBS for those who might not understand how the condition occurs and gave the background to Charles Bonnet, who documented his grandfather’s hallucinations after sight loss from cataracts in 1760.

2. Played two videos of finalists from a Poetry Competition held in Trinidad and Tobago to raise awareness of CBS. The entrants had to write a poem to describe living with CBS. The competition had been organised by Cheron Faustin-Holder, who flew over to the UK for the launch of Esme’s Umbrella in 2015. Cheron works tirelessly for those with the condition in her home islands and this was just one of her campaigns. Dr ffytche was asked to judge the winner.

3. Went on to give hope for medication to be found and talked about the trials of two drugs – a type of melatonin and cannabis oil. He also confirmed that some medication for epilepsy and dementia can be used if CBS hallucinations are multiple, but they come with severe side effects and may not be suitable for everyone.

Gayle Barrow and Dr Amit Patel, with Kika

1. Dr Patel described how he lost his sight, from a haemorrhage behind his eyes, and how he has had to adapt to a dark world. He has also developed CBS and the image of a girl wearing white, with blood pouring from his face plays in front of him day and night. She appears to be shouting at him. Kika, his guide dog has begun to sense BEFORE the hallucination appears. She comes to comfort him by placing her head on his lap and staying there until the image disappears.

2. Gayle Barrow described the work of the Medical Detection Dogs – sniffing cancer and alerting their owners when medication for conditions like Addison’s, diabetes, epilepsy, is required. She then went on to explain that Judith Potts had contacted the Medical Detection Dogs to ask its CEO, Dr Claire Guest, if she thought it was possible that Kika was detecting a change in Amit’s body before the CBS event began. Dr Guest said a definite ‘yes’ and, next year, Gayle will lead a piece of research to see what is being detected by Kika. This would involve dogs other than Kika and people with CBS to volunteer their services. One person volunteered that afternoon. Identifying what is happening to Amit’s body before the hallucination will be of great benefit to future research.

Kat da Silva Morgan

Gave an update on the research at Newcastle University, where the team has been comparing the brains of people with sight loss and CBS against those with sight loss who do not develop the condition. Volunteers – both with and without CBS – have come forward to help. Brain scans to examine areas of cortical activity, such as blood flow and neurotransmitter concentrations have been used in Newcastle. The team has also been looking at the chemicals in the brain to see if they are the same in brains with CBS and those without the condition. The second phase of the research involved people travelling to King’s College, London for a pilot study with Dr ffytche to assess the therapeutic benefits of non-invasive brain stimulation applied over consecutive days – to switch off the cells that were firing and producing the visual hallucinations. The data will be interrogated by Kat and the results should be known by the spring of next year.

Dr Alex Yeong

Talked us through a new website called Gene Vision, which is in development and available in 2020. This will be a resource for patients and doctors and will offer a comprehensive guide on rare genetic eye disorders – and there is a section on Charles Bonnet Syndrome. Alex is working with Dr Mariya Moosajee.

Mary Bairstow

Using a series of props, Mary talked about her first experience of a CBS patient and how, after the patient had described the hallucination, the ophthalmologist implied ‘drink had been taken’. That was a long time ago, but Mary still comes upon clinicians who do not properly understand CBS. She described how she explains the condition to patients – and doctors! She emphasised the need to gently ask each patient whether or not he/she is seeing anything which is odd - and that awareness of CBS is vital. She will take this forward to the College of Optometrists and Vision UK’s Mental Health Committee. (Obviously, not as a mental health issue).

Nina Chesworth

Nina spoke very movingly from the perspective of a mother who has virtually no sight and CBS. She described the stages of her sight loss. First from an eye condition caused by the flu virus when she was 2 years old – but which has never received a diagnosis. Then she underwent 4 corneal transplants, 2 lens transplants and a cataract removal, which helped a little. Unfortunately, two freak accidents – the first in which she lost her right eye - removed all her sight. Following the emergence of CBS, she described how she tries to protect her son and stepson from what she is seeing and how it impacts on her daily life.

The afternoon

A series of questions was given to each table. After discussion, the answers verified the road down which Esme’s Umbrella – and the NHS - should go.

The groups’ answers were:

Signposting so that the patient can find the support that is on offer – although, at the moment, it is restricted to peer support from Esme Room Support Groups – of which more are needed. Information about CBS should be carried by all eye clinics, GP surgeries, libraries etc.

Social prescribing by GPs would help - but they need to be educated about CBS first. Perhaps through talks to GPs from patient advocates during practice meetings or training days. Practice Managers should be targeted.

Head of Counselling at Macular Society talked about the CBS telephone group counselling service which is being trialled. People with any type of sight loss – not just macular – can join in. Mindfulness can be tried.

Agreed that CBS Specialist Nurses should be established, based on the Macmillan Nurse model – but that is not an excuse for everyone else. Every healthcare professional who comes in contact with patients should be aware of CBS and able to explain the condition – to give that all-important reassurance.

All clinicians of any specialty must gently ask about the patient’s sight and then ask if the patient is seeing images - but must not say ‘You will get used to it’. Patronising language is not acceptable.

Better training about CBS to medical students and nurses. Special courses – with CPD points - to be written by Dr ffytche will help

Constant reassurance and an understanding that CBS presents differently in each person is vital. Successful coping strategies vary – some work well but not all for everyone.

More leaflets needed.

More research.

Raising awareness through the media and approaching script-writers for TV soap operas was suggested. Posters created to be displayed at bus-stops, train stations, airports, GP and hospital waiting areas. All excellent ideas but, as Judith pointed out, they all need funding.

The impact of CBS on the person and family must be understood by everyone and NOT downplayed.