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VISUALLY IMPAIRED in CAMDEN C/O Somers Town Community Centre 150 Ossulston Street, NW1 1EE Tel: 07980 328 959 Email: [email protected]

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VISUALLY IMPAIRED in CAMDEN C/O Somers Town Community Centre 150 Ossulston Street, NW1 1EE Tel: 07980 328 959 Email: Rosemary@Somerstown.Org.Uk VISUALLY IMPAIRED IN CAMDEN c/o Somers Town Community Centre 150 Ossulston Street, NW1 1EE Tel: 07980 328 959 Email: [email protected] Newsletter – January 2018 Contents 1. January Members’ event 2. New drug could mean less frequent injections 3. Images used to educate public about age-related macular degeneration (AMD) not realistic, says study 4. Research priorities agreed to stop early age-related macular degeneration (AMD) turning into late AMD at Wellcome retreat 5. New sight saving treatments now available on the NHS 6. Funding research into a technological solution for repeated involuntary eye movement 7. College of Optometrists’ funded research identifies weaknesses in optometric data 8. ‘Works For Me’ Employment Programme 9. Microsoft Seeing AI now available in UK 10. Virgin Atlantic enlists help from Guide Dogs to become first airline to offer accessible entertainment for customers with sight loss 11. Jerusalem (And did those feet in ancient time) – what’s happening now! 12. Did you know…? 13. January’s quick quiz …and finally - The strangest things sent in the post 1. January Members’ event Date: 16 January 2018 Time: 2pm – 4pm Venue: Swiss Cottage Community Centre 19 Winchester Road NW3 3NR At the November Members’ event Councillor Leila Roy, Champion for residents with a visual impairment and member of the council’s Disability VIC Newsletter January 2018 This issue is sponsored by Earth Natural Foods, 200 Kentish Town Road, NW5 2AE Page 1 Oversight Panel attended to hear about the main issues and problems that affect visually impaired people living and/or working in Camden that the council have a total or partial responsibility to address. Cllr Roy was presented with a substantial list of issues. In no priority order, and noting this list was not exhaustive, these were: Cyclists, and increasingly mopeds, on pavements Other obstacles on the pavement including, but not limited to: Street furniture such as ‘A’ boards Waste and recycling collecting containers and rubbish bags on pavements Tables & chairs encroaching onto the pavement Uneven paving tiles that are easy to trip over Overhanging bushes and tree branches Roadworks Dangers posed by silent vehicles such as buses and cars Dangers posed by ‘Floating’ bus stops Dangers posed by the proposed extension of the North-South Cycle Superhighway along Judd Street right past the RNIB’s office which will result in the removal of the controlled (pelican) crossing Lack of compliance with the Equality Act 2010 and the NHS England Accessible Information Standard meaning that people’s information or communication needs are not being met A ‘one-size’ fits all approach, for example, with the majority of council services accessible only via its website New buildings not being adequately designed to meet the needs of VI people, 5 Pancras Square being a prime example The lack of early intervention in policy planning & and change and contract development Members suggested to Cllr Roy that a key solution to many of the issues raised is disability awareness training for all staff, whatever service they are delivering and wherever they are delivering that service, and that such training needs to be embedded in the culture of the council. Members also submitted that policy makers and service providers are not aware enough of how visually impaired people live their lives or what they are capable of. Members further put forward that there is often a marked difference between the council’s perception of what is happening and how well they VIC Newsletter January 2018 This issue is sponsored by Earth Natural Foods, 200 Kentish Town Road, NW5 2AE Page 2 are doing and the experience of ‘people on the ground’ and that this gap needs to be acknowledged and addressed. Cllr Roy has kindly agreed to attend this event to update members on progress made on the above list of issues. And as usual, there will tea & coffee and cake & biscuits and a chance to meet up with other VIC members. 2. New drug could mean less frequent injections Results from a recent clinical trial suggest that a possible new treatment for wet age-related macular degeneration (AMD) could control symptoms as effectively as current treatments, with less frequent injections. The late-stage trials have revealed the drug, named brolucizumab, is just as effective at treating wet AMD as Eylea. If approved, brolucizumab would go up against Eylea and Lucentis, two treatments for AMD. The drugs are all injected into the eye. Novartis' brolucizumab would be given once every three months, while Eylea is injected once every eight weeks. Vas Narasimhan, the current global head of drug development and chief medical officer at Novartis, said the most exciting results from the trial were the reduction in retinal thickness and retinal fluid. In comparison to the patients who got Eylea, brolucizumab reduced that retinal fluid by more than 30 per cent. Novartis has a long history of treating eye conditions. Narasimhan said the development of brolucizumab is part of the "next chapter of innovation at the company" for eye conditions. 3. Images used to educate public about AMD not realistic, says study Images used to educate the public about vision loss due to the leading cause of blindness are not fit for purpose, according to a new study from City, University of London. VIC Newsletter January 2018 This issue is sponsored by Earth Natural Foods, 200 Kentish Town Road, NW5 2AE Page 3 The researchers found that the image commonly used to represent age- related macular degeneration (AMD), which affects more than 600,000 people in the UK, did not provide a realistic representation of people’s experiences. When people with the condition were asked about how their vision looks it was found that they instead provided a wide variety of descriptions. These ranged from blurring, to distortion and missing parts of the image, which were far more complete and varied than those implied by existing images, which just show a patch of distortion or blackness in central vision surrounded by a clear periphery. As a result, the findings have significant ramifications for individuals, as it may lead to them misunderstanding the severity of their own condition and may in turn affect how people monitor their own disease progression. The findings, which are published in ‘Ophthalmic and Physiological Optics’, are particularly relevant due to the increasing incidence of AMD and have implications for eye-care practice. As a result, the researchers are calling for the development of more realistic images of the visual symptoms of AMD for patient and public education which encompass the wide range of descriptions patients with the condition use to describe it. To investigate how people described the visual symptoms associated with AMD, the researchers carried out an eye exam for 29 participants, recruited primarily through the Macular Society, with a median age of 75. Three, 17 and nine patients had early, intermediate and late AMD respectively. Participants were also asked to describe visual symptoms of their condition in a conversational interview, and were asked to comment on a photograph typically used to portray the visual symptoms of AMD. Speaking about the study, lead author Deanna Taylor, a researcher working in the Crabb Lab in the Division of Optometry and Visual Science at City, University of London, said: “Images showing a patch of distortion or blackness in central vision surrounded by a clear periphery are frequently used illustrators of vision with AMD, but in our study we found that when we showed participants this popular image, many unequivocally rejected it as it wasn’t realistic. VIC Newsletter January 2018 This issue is sponsored by Earth Natural Foods, 200 Kentish Town Road, NW5 2AE Page 4 “Our findings are important for several reasons. First, we’ve shown that images that are designed to educate the public about AMD are not fit for this purpose. This is a serious issue as the images could be misinterpreted to be a sign of early visual changes in AMD but this clearly does not fit with the experience of people with early or intermediate AMD in our sample. “We also found that the visual symptoms experienced by most people with AMD in our sample were likely to be more subtle and less simplistic than those depicted in the images; this could have ramifications for individuals about misunderstanding the severity of their own condition and may in turn affect how people monitor their own disease progression. “We hope that through the development of new, more nuanced and realistic images, better education on AMD can be provided. This is especially important considering how the number of people with the condition is set to continue to rise in the UK and around the world over the coming decades.” 4. Research priorities agreed to stop early age-related macular degeneration (AMD) turning into late AMD at Wellcome retreat Three leading sight loss charities, Blind Veterans UK, Fight for Sight and the Macular Society, have joined forces in the global fight against age- related macular degeneration (AMD). The main objective of the collaboration, which is called Action Against Age-Related Macular Degeneration (AAA), is to facilitate the funding of medical research aimed at finding an effective treatment for early-stage AMD. The charities, together with Wellcome Genome Campus Advanced Courses and Scientific Conferences, brought together 42 international clinical and basic scientists, 16 members of eye charities and other funders, and two patients in a retreat-like workshop in June 2017. The retreat entitled ‘How to stop early AMD turning into late AMD?’ was a gathering of experts in different areas of both basic and clinical research on AMD. AMD is the commonest cause of visual impairment in the developed world and, to date, there is no intervention that slows or prevents the early disease progressing to blinding neovascularization or geographic atrophy.
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