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Opchat Magazine Charity PageCharity News, January to March 2021

 

 


Two Day event starts today as an online Scottish Conference about those with Visual Impairment and Isolation.
Charles Bonnet Syndrome storyline to feature on TV soap opera
ABDO elects new Chair of Trustees
RNIB to vacate Judd Street Premises
VI's launch a new gaming group
The Macular Society announces a New treatment for wet AMD approved for NHS patients
Oar-some challenge for optometrist!
Read Charity News from October to December 2020


Two Day event starts today (march 17th) as an online Scottish Conference about those with Visual Impairment and Isolation.

March 2021

The impact of the year-long covid crisis on blind and partially sighted adults and children will be examined in a major Scottish online conference that begins today [Wednesday, March 17th].

Kirin SaeedIssues discussed will range from social isolation and loneliness, delays in sight-saving eye-care, how home-schooling is affecting children with sight loss, and providing emotional support for those coming to terms with sight loss.

Mental Health Minister Clare Haughey MSP will address over 100 sight loss professionals at the two-day event this morning.

“We know the COVID-19 pandemic has been especially difficult for those with sight loss, affecting their mental health and increasing feelings of isolation and loneliness," Ms Haughey said. "That is why we are working closely with stakeholder organisations to better understand and respond to the mental health inequalities that have been exacerbated by the outbreak. Through our Mental Health Transition and Recovery Plan, backed by a £120 million Recovery Fund, we are committed to addressing the impacts on the mental health of people with long term physical health conditions and disabilities, including sight loss.

“This conference is a great opportunity for vision impairment organisations and those they support, to come together and share their experiences, the challenges they have faced, and also to reflect on any more positive opportunities that the pandemic may have brought. We look forward to continuing to work with the NHS, Public Health Scotland, local authorities and the third sector, to ensure that everyone in Scotland living with a visual impairment receives the very best possible support.”

Also speaking this morning, Kirin Saeed from Edinburgh will tell participants about her own experiences as a blind woman in coping during lockdown.

“For myself and many visually impaired people, the last year has changed our lives in so many ways," she said. "We have had to master technology, learn to be even more resilient and become a stronger community supporting each other with everyday little things like chatting on the phone. We have also realised the importance of all those services we take for granted which, for now, we can't access in person. The covid crisis has taught us the need to support the vulnerable and made our society stronger for it.”

The conference, 'Working Collaboratively Towards a Scottish Vision Strategy', has been jointly funded by RNIB Scotland, Sight Scotland and the Thomas Pocklington Trust. Other major sight loss charities taking part are Guide Dogs Scotland, Visibility Scotland and Visionary.

Around 178,000 people are living in Scotland with a degree of significant sight loss.

James Adams, director of RNIB Scotland, said: "We've still to assess the full impact of the covid crisis on one of the most vulnerable groups in our community. Many of the ongoing problems people with sight loss faced have been exacerbated during this period, from inaccessible health information to a lack of clarity over guiding rules.

"We need to learn from this experience so not to build new barriers into the post-covid world. The 'Spaces for People' initiative for instance, while welcome in encouraging active travel and re-designing our streets, could inadvertently create new obstacles for people with disabilities if not properly thought through."

Mark O’Donnell, chief executive of Sight Scotland and Sight Scotland Veterans said: “The pandemic has been hugely difficult for thousands of blind and partially sighted people in Scotland, and too many have been isolated and excluded. This has shone a light on where sight loss is leading to inequality in our communities, but also on how changing and innovating the way we provide support and services can help address this.

"We are excited to be participating in this important conference where we will discuss what more we need to do now to create an inclusive Scotland for people living with sight loss.”

Charles Colquhoun, chief executive of the Thomas Pocklington Trust, said: "We know, through our work, the many challenges Covid has brought to blind and partially sighted people across the whole UK from socially distancing, food insecurity, new and often poorly-conceived road layouts to the continued inaccessible communication on things like vaccines and testing. We will continue to work with partners to look at how these can be addressed.’"

Tomorrow, speakers from NHS Scotland and the Scottish Government will outline how digital healthcare can re-shape the way services are delivered in future, including the launch of the new Electronic Patient Record system that will integrate existing systems and support new ways of working in hospitals.

The conference will also consider a looming potential shortage of trained rehabilitation officers in Scotland who help people newly diagnosed with sight loss to maximise their independence.

Charles Bonnet Syndrome storyline to feature on TV soap opera

February 2021

Charles Bonnet Syndrome
A character in popular TV soap opera Coronation Street will admit to experiencing visual hallucinations, known as Charles Bonnet Syndrome (CBS).

In next week's episodes, a character called Johnny Connor, will admit to having the hallucinations which are caused by sight loss - helping to raise vital awareness of the condition, which often leaves people unnecessarily worried about their mental health.

Viewers of the programme will learn more about CBS as the character admits to seeing things such as mice, cockroaches and a ginger cat.

The character, who has multiple sclerosis in the programme, has started noticing a deterioration in his eyesight due to his condition.

The actor playing Johnny Connor, Richard Hawley, spoke to the Sun about the storyline.

He said: "Once you have a diagnosis of Charles Bonnet syndrome things can get a little better simply because you know what it is.

"What happens is your brain makes up images because it is not getting enough information because of reduced eyesight. There is no attendant feeling of anything else. It is just simply hallucination, it can be an unpleasant one or it could be a pleasant one or both."

Charles Bonnet hallucinations can range from simple flashes of light, colours or shapes to more disturbing images such as disembodied faces and strange figures.

Up to half of all people with macular degeneration are thought to experience Charles Bonnet Syndrome at some time.

ABDO elects new Chair of Trustees

February 2021

At the ABDO College Trustees meeting held on Wednesday 27 January, Angela McNamee stood down as chair of the Trustees after five years in the role and having completed the maximum term of eight years as a Trustee. She has been succeeded as Chair by former ABDO President Clive Marchant

Sir Anthony Garrett CBE HonFBDO, secretary to the trustees says, “Angela McNamee has had five highly important and successful years as chair of the ABDO College Trustees. She has shown great leadership during these recent most difficult of times and has always put the long term interests of the College first. Her keen sense of duty will be greatly missed by her fellow Trustees and College staff alike.

“Clive Marchant assumes the chair at this challenging time and his considerable experience as an ABDO Board member and President will certainly be invaluable in the months ahead.”

Clive Marchant FBDO says, “I am absolutely delighted to be appointed Chair of the College Trustees It is 20 years since ABDO College was established, a time to celebrate its success to date but the pandemic is a time of great challenge as the college team adapt to delivering first class education remotely. Jo Underwood, the College’s founder principal retires. Through her leadership the College has grown to become a world-renowned educator of opticians. Jo should be immensely proud of all she has achieved. The College will be in good hands when her successor Dr Robert Cubbidge takes post this summer. With change comes new opportunities and ABDO College will continue to be at the forefront of delivering world class education for the optical profession. I look forward to working with the trustees and college team as we develop and approve the College’s strategic goals and objectives.”

RNIB to vacate Judd Street Premises

February 2021

RNIB has agreed to sell its London office to Montrose Land and AshbyCapital, but will lease it back for two years while it finds a new location.

The charity declined to reveal how much it will receive for 105 Judd Street. It described the sum as “a strong offer” and said it will be enough to cover the cost of relocating to a new, fully-accessible office.

Matt Stringer, chief executive of RNIB, said: “As part of our ongoing plans to transform RNIB to meet the 21st Century needs of blind and partially sighted people, we have been assessing our office space to ensure it best meets our needs and we are using our resources as effectively as possible.

“For some time, we have had more space in Judd Street than we require, an unrealised asset that can be put to better use for our customers.”

RNIB leases office space to Guide Dogs, which will now also have to find a new location.

Tom Wright, chief executive of Guide Dogs said: “We’re committed to having a central London hub as part of our strategy to support more people in London with our services. We’ll soon begin looking for a new space which meets the needs of our staff, volunteers, dogs in training and is fully accessible for the people we support.”

Once RNIB has left the building, the buyers plan to redevelop the building.

Used previous property sale to pay down debt

RNIB used the proceeds from the sales of property to repay £19.9m in bank loans, its annual accounts for the financial year ending March 2020 show.

It sold the RNIB Pears Centre for £10m. The property was involved in safeguarding incidents and was closed in 2019.

Its income for 2019-20 was £95.9m. This is a slight fall on the previous year when it was £106.3m.

RNIB says its reserves were £25.7m (2019: £32.8 million), marginally above target minimum, putting in a good place ahead of the coronavirus pandemic.

“Our financial sustainability has transformed over the last few years thanks to a strong focus on cash and cost control, putting RNIB’s finances in a sound position when the financial impact of the coronavirus started to take effect in March 2020,” the report says.

“Through March and April, we modelled a range of forecast financial outcomes and prepared a set of mitigations (including utilisation of the Coronavirus Job Retention Scheme), resulting in a liquidity plan that has been implemented effectively.

“As a result of this preparation and the planning and hard work of our staff and volunteers, RNIB’s finances have not materially weakened since 31 March 2020.

VI's launch a new gaming group

January 2021

It’s game on for blind and partially sighted players in Northern Ireland and Scotland with the launch of a new gaming group.

They have come together to explore how they can enjoy the same video-games as their sighted peers, and press developers to make gaming software more accessible.

Set up by national sight loss charity Royal National Institute of Blind People (RNIB), members of the group are taking part on a weekly online call, sharing their own experiences of gaming and which games they've found most accessible.

"They're an incredibly motivated and positive bunch, and I'm very excited to see where they take things," said James Kyle, RNIB Scotland's community connection co-ordinator. "Already the group are discussing ways to play games together outside of the weekly meetings, making YouTube content for their own channels, and possibly fundraising as a group for RNIB as well."

However, the majority of video games at present aren't accessible to players with sight loss, says James, although this does vary.

There are more accessible games on iPhone and iPad than on PlayStation and Xbox game consoles, for instance, he explains. "But thankfully, the situation is improving. In the past few years, a number of big games have added narrated menu-systems, more flexible 'difficulty options', and more audio-cues to convey extra information to the visually impaired player.

"The current leader is 'The Last of Us, Part 2', an action game released this year for the PlayStation 4 game console. It incorporates audio cues, high-contrast modes, and gameplay adaptations to offer blind players a similar experience to that of a fully sighted player.

"The developer, Naughty Dog, invited the disabled gaming community, including blind and partially sighted gamers, to test and provide feedback on the new features they were developing. As a result, the suite of accessibility features and options were far more useful to disabled players."

New technology should by its very nature be adaptable to different people's needs, says James. Text can be enlarged, colour contrast enhanced, audio description and cues added. "People with sight loss can already enjoy accessible books, films and television thanks to new technology - so why not video-games?

"We already have a broad mix of people joining our group, from those with a lot of useful vision to people with none at all. Your level of sight, of course, can significantly affect which games are accessible. We want our group to be inclusive to not only experienced gamers but people who have never played before as well and are looking for a place to start."

Fiona Joyce, RNIB Northern Ireland’s community connection coordinator, said: “Our new VI Gaming group consists of a broad mix of people from those with a lot of useful vision to people with none at all.

"At our final meeting in 2020 the group drew up their wish list for 2021 and have lots of exciting plans including inviting representatives from the gaming industry to speak at the group meetings.”

Case Studies

David Barry (28) from Bangor in Northern Ireland

David helped set up the group in November after losing his sight at the age of just 25.

David BarryThe father of three, who has a rare sight condition called keratoconus, hopes that the group will provide a much-needed social space for gamers to share their own experiences of gaming and discuss games they've found most accessible. He also wants to challenge software developers to consider blind and partially sighted people when designing new games.

David, now 28, explains: “Having only recently lost my sight, I hated the thought of losing my hobbies as well. My entire social life is around gaming and I worried my sight loss was going to stop me from having a social life.

“The Royal National Institute of Blind People (RNIB) has many groups, so I spoke to RNIB Connect’s Fiona Joyce to see if there was a gaming group. There wasn’t, but she reached out to colleagues and before we knew it, she had helped set up the gaming group with RNIB Connect in Northern Ireland and Scotland!”

David says everything is online for younger generations and they’re getting into gaming a lot younger. “I want to ensure I keep that connection with my children as well,” said David, “and show other parents with sight loss that they can do the same.”

As a huge fan of the game Clash of Clans, David recently reached out to its creators Supercell to ask them to make their games more accessible.
“My new year wish list involved contacting Supercell. I thanked them for the experience they’ve given us gamers but asked them to make their app more accessible and I even offered the group’s help in doing that for their apps. They don’t seem to notice, but blind people are spending more and more time on their phones.

"Technology is the way forward. You shouldn’t be left out of this new online world just because you are blind.”

David plays on anything from Amazon’s Alexa to smartphones, the computer and the PS5 and believes the essence of the new VI (visually impaired) gaming group is about bringing people together.

Over Christmas, David tried to get in touch with celebrity VI gamer Brandan Cole who helped developers create the game The Last of Us Part 2 – hailed as the most accessible game for players with sight loss.
The game incorporates audio cues, high-contrast modes, and gameplay adaptations to offer blind players a similar experience to that of a fully sighted player.

David succeeded and Brandan is set to give a talk to the group about playing and accessibility in the near future.

Brandon said: “Video games are one of the greatest forms of entertainment in the world today. From videogames come larger than life experiences, vast open worlds, and incredible stories. Everyone, including the totally blind, deserve access to all those things and more, and that’s why I do what I do.

“Games should be for everyone, and I will continue to do my part to make that a reality.”


Iain Strachan (56) from Glasgow

Iain Strachan
Iain is registered partially sighted and is a long-cane user. "I have lost about 50 per cent of my sight since this happened four years ago," says Ian. "I have been a gamer for 30 years, playing personal computer and console games and I've recently started a You Tube channel called 'Part sighted gamer', playing sighted and part-sighted gamers.


"I look forward to our weekly Visually Impaired Gamers meeting where we can all share out thoughts on games what we are all playing and have a chat. It's good to talk to fellow gamers about the hurdles of been visual impairment and trying to find accessible games. I hope we can build our group and keep it going in the future."


Emma McLean (30) from Kilmarnock

Emma McLean
Emma has no sight. "I feel comfortable around the Visually Impaired Gaming Group as I can share things. We all listen to and understand each other, even if we all have different degrees of sight loss. I really do feel a part of the group.

"When I had my sight, I loved video games. It was Final Fantasy 8 that got me into role-playing games. I really like fantasy games because I feel I am a part of that world and can throw myself into the characters and be anything I want to be.

"I also like it when you can create your character and make what you want them appear to be. But that’s the designing part of me, as I like to give the character a new outfit or look.

"I guess that’s why I would love to make my own video game. I have created the story but need help to take it forward."

The Macular Society announces a New treatment for wet AMD approved for NHS patients

January 2021

A new treatment for wet age-related macular degeneration (AMD), which could see patients receiving as few as four injections a year, has been approved for use in England and Wales.

Brolucizumab (Beovu), which was approved for use in Scotland earlier this year, has today been approved by the National Institute for Health and Care Excellence (NICE) on the NHS.

The new drug, which has been brought to market by Novartis, could see patients going as much as 12 weeks between eye injections.

The drug could help minimise the treatment burden for many patients, as more than 50% of patients in clinical trials were able to maintain vision on 12-weekly dosing intervals.

NICE’s recommendation was based on findings from the Phase III HAWK and HARRIER clinical trials, which showed that in less than a year almost a third of patients were able to see at least 15 more letters in standard eye tests and vision gain was seen as early as four weeks into the trial, with progress sustained for two years.

Cathy Yelf, chief executive of the Macular Society, said: “Eye injections are a source of fear and anxiety for people with wet AMD and in these exceptional times, they are more anxious than ever about hospital visits.

“We are delighted that a new treatment option, which has the potential to maintain vision and help minimise the number of hospital visits for people living with this devastating condition, is now available in England and Wales.”

Robin Hamilton, consultant ophthalmic surgeon at Moorfields Eye Hospital and UK chief Investigator for the HARRIER study, said: “Wet AMD can progress rapidly and cause significant visual loss in as little as 3 months. Wet AMD can be managed with effective, consistent treatment and regular monitoring of fluid in the back of the eye,”

“Today’s recommendation offers patients access to a treatment option that has the potential to minimise the treatment burden and hospital visits, while improving their vision and slowing down the progression of their wet AMD. This should give them more time to do the things that matter most to them.”

Chinmay Bhatt, managing director UK, Ireland & Nordics for Novartis Pharmaceuticals, added: “This decision not only means people with wet AMD have access to a treatment option that has the potential to maintain their vision, but also offers to minimise treatment burden and hospital visits.

“This is more vital than ever to help relieve pressure on healthcare systems. We are working closely with the NHS to ensure eligible patients can start benefiting from brolucizumab as soon as possible.”

Oar-some challenge for optometrist!

December 2020

Talaska Whisky Atlantic Challenge This time next year Martin Skehan will have swapped his test room for the Atlantic Ocean as he takes on the world’s toughest row, the Talisker Whisky Atlantic Challenge Whisky Atlantic Challenge, in a boat with his visually impaired friend Stuart and two other rowers.

Martin (59), an optometrist at Specsavers in Wellington, Somerset will attempt a gruelling 3,000 mile rowing race as part of a team of four, named the Wrekin Rowers. As well as testing eyes, 2021 will be a year of hard training and fundraising to raise £100,000 for two charities: Severn Hospice and the Royal National Institute of Blind People (RNIB).

Although always a keen rower, having won a bronze-medal for Concept 2 indoor rowing, this will be the first time that Martin will have taken on a challenge so epic – which will see him and his three friends battle the elements for around 45 days of round the clock rowing. They will set off from the Canary Isles in December 2021, then row across the second-largest ocean in the world and land in the West Indies the following February.

Martin will be joined by Stuart Shepherd (56) and brothers Stuart (51) and Gary Richards (54) who are all members of the Shropshire Adventure Rowing Club (SARC).

‘The challenge is two-fold really,’ comments Martin. ‘Firstly, there’s the race, a journey of the unknown which will undoubtedly demand not only our utmost physical fitness but mental attitude too. Then there’s our pledge to raise £100,000 for the two charities, both of which are very close to our hearts.

Martin's late wife Becky passed away in 2010 and he says that exercise and fitness has been a restorative journey for which engendered a love for having a goal and a challenge. "Rowing, initially indoor and more lately outdoor and maritime rowing has been a focus for my exercise and has brought me into a friendship group of like-minded individuals who I am proud to join as a team. We all live within sight of a famed local landmark, the Wrekin Hill in Shropshire and are proud to be known as the 'Wrekin Rowers' looking to take on the biggest challenge of our lives, the Talisker Whisky Atlantic Challenge in 2021, rowing as a foursome across the Atlantic.'

‘As a team, each of us has been touched in some way by the hospice – which does such fantastic work around our local area and beyond. While the RNIB is particularly relevant to me, as an optometrist, but also to Stuart Richards as he’s registered as sight impaired. Over the years he’s had tremendous support from the charity and is keen to give something back.’

Talaska Whisky Atlantic Challenge
Martin and the rest of the crew have a huge challenge ahead of them, battling 20ft high waves, seasickness and blisters, but he sounds undaunted: 'What more of a challenge could you want and particularly in these times, when the opportunity presents grab it!'

Lizzi Wagner, RNIB’s Senior Challenge Events Manager, adds, ‘Martin and the team are absolute superstars and we’re very proud and grateful to have them aboard Team RNIB. This is an extraordinary challenge and the money they raise will help fund vital services to support people with sight loss across the UK.

‘It’s especially exciting that one of the crew members, Stuart Richards, who is partially sighted himself, is helping to show that with the right support there should be no limits or barriers to what people with sight loss can achieve.

‘A huge thank you to the Wrekin Rowers from everyone at RNIB.’



The team have already begun training for the race, which starts on 12 December 2021, with indoor rowing sessions during lockdown restrictions and river and lake rows when allowed. In the spring of next year their boat will move to the Welsh coast to allow for sea training.

The Wrekin Rowers have bought the boat, called the Noah SARC, themselves and self-funded the trip, so any money they do raise will go directly to their chosen charities.

Anyone who would like to donate to the fundraiser can text the word Atlantic to 70520 to donate £10 or Atlantic5 to donate £5. Alternatively, people can go to www.wrekin-rowers.com/donate to donate online.

 

 
 
 
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