Tag: sight loss

Your sight could be lost if you don’t attend eye-screenings, charity warns diabetics

As the covid crisis hopefully eases, concerns are being focused on the impact of lockdown on other health conditions. With health centres forced to postpone routine screenings last year, there are fears some conditions may have worsened in the absence of early diagnosis and treatment.

During Diabetes Week this week [June 14-20th], the national sight loss charity RNIB Scotland is emphasising it is more important than ever that people with diabetes attend their regular check-up appointments, now that these have resumed.

RNIB director James Adams said: “Diabetic retinopathy, a complication of diabetes, can affect the small blood vessels at the back of the eye and is a major cause of sight loss among working-age adults. But damage to vision can be arrested if detected early enough.

“While it’s possible that diabetes won’t cause any changes to your sight, the most effective thing you can do to prevent this is to go to your retinal screening appointments and eye examinations, where safety measures are in place.”

The message is also being emphasised by NHS Scotland. Dr Mike Gavin, clinical lead for the national Scottish Diabetic Eye Screening Programme said: “We are working hard to see patients for screening, after the service was temporarily paused during the first lockdown in 2020. Patients should always attend screening whenever they are invited to prevent avoidable loss of sight.”

Each year, 5,500 patients with diabetes in Scotland need to undergo further imaging or see an NHS eye specialist for the first time due to worsening in their retinopathy.

There are 3.5 million people in the UK who have been diagnosed diabetes, and an estimated 500,000 people living with undiagnosed diabetes. Within 20 years of diagnosis, nearly all people with type 1 diabetes and almost two-thirds of people with type 2 diabetes will have developed some form of diabetic retinopathy. People with diabetes are also at increased risk of glaucoma and cataracts.

People from a South Asian or African-Caribbean background are two to four times more likely to get type 2 diabetes. They tend to develop it at a younger age which means they live with the condition for longer.

The risk of complications increases with the length of time people have the condition. It is not known why this is the case, but it is likely to be a mixture of genetics, lifestyle, and environmental factors.

RNIB Scotland is on the steering committee of a five-year study that is following 1,100 retinopathy patients from across Scotland.

The LENS (Lowering Events in Non-proliferative retinopathy in Scotland) trial is testing whether a cholesterol-lowering medicine, fenofibrate, can slow the progression of retinopathy.

LENS is being co-ordinated by the Universities of Oxford and Glasgow in partnership with Aberdeen, Dundee and Edinburgh, and with NHS Scotland’s Retinal Screening Service. More information about the trial is available at: www.ctsu.ox.ac.uk/lens.

* If you’re worried about your vision, contact RNIB’s Sight Loss Advice Service on 0303 123 9999 or visit www.rnib.org.uk/eyehealth. 

For more information on the NHS Scotland eye-screening service, visit  https://www.nhsinform.scot/illnesses-and-conditions/diabetes/diabetic-retinopathy.

Covid lockdown could be causing more people with sight loss to experience hallucinations

The Royal National Institute of Blind People (RNIB) is warning that ongoing lockdown and coronavirus restrictions could be causing a spike in hallucinations due to sight loss.

Hallucinations due to sight loss are known as Charles Bonnet Syndrome (CBS), which is caused when the brain attempts to fill in gaps in visual information with invented images or patterns. The hallucinations vary from person to person and range from simple lights or patterns to complex images. They are often distressing.

The condition has now sparked interest from Britain’s longest running television soap, ‘Coronation Street’, with a storyline showing Weatherfield resident Johnny Connor, played by actor Richard Hawley, beginning to hallucinate cockroaches, cats and people. Although his symptoms are caused by sight loss, they are initially misidentified as a psychiatric issue.

Although there is little research into the condition, it is widely believed that at least third of all people with significant sight loss experience these symptoms, but it is often under-reported.

Over the last 12 months, the number of people calling RNIB’s Sight Loss Advice Service to report CBS has increased – with sharp peaks in calls corresponding with coronavirus restrictions. Last month, the number of calls about hallucinations increased by more than two-thirds (67 per cent) compared to January 2020, and accounted for more calls than any other condition.

Thelma Good, aged 70, from Biggar in South Lanarkshire, has experienced Charles Bonnet Syndrome for years after losing a large proportion of her sight due to glaucoma and cataracts.

She said: “I studied psychology at university, and we learned about Charles Bonnet Syndrome in my course. Because of this, although it would be years until I was officially diagnosed with the syndrome, I was able to understand why I was having hallucinations, I knew that it was related to my sight.

“One of the scary aspects for me is that when I cross the road my brain fills in the gaps in my vision with a clear road, which means that I can’t see approaching cars or cyclists. That can be really challenging and frightening, so it takes me a long time to cross roads.”

Dr Louise Gow, specialist lead for eye health at RNIB, said: “The increase in calls and emails we have received about CBS since lockdown has been dramatic. And the visions that are being reported are much more vivid than usual, which has left many people feeling particularly distressed – describing their hallucinations as ‘out of control’.

“It’s as though the stress and anxiety of coronavirus, and the resulting restrictions, has had an impact on people’s symptoms. Although there is currently no research to confirm such a link, it would seem stress and lack of stimulation can increase symptoms.”

To help people with the condition, RNIB has launched a new Talk and Support service specifically for people experiencing CBS. Created with CBS specialists Esme’s Umbrella.

Judith Potts, founder of Esme’s Umbrella said: “We launched Esme’s Friends, a telephone chat service, which has now joined RNIB’s Talk and Support Groups. The calls provide peer-support and new contacts, all of whom understand what it is like to live in a world of vivid, silent, visual hallucinations.

“The calls can be joined by carers and family members who are too often forgotten, but who also need support. Through Esme’s Friends, people living with CBS find they are part of a community which is developing its own voice.”

Dr Louise Gow added: “It is very worrying that awareness of CBS remains low, even among health and care professionals. We have heard of several instances where GPs have mistakenly referred patients to mental health services, rather than directing them to information about how to cope with CBS and ensuring that they see an eye health professional.

“If this happens, it is possible that the underlying vision issue causing the CBS is not treated and could worsen, resulting in further avoidable sight loss.

“While there is still a lot to learn about the condition, it’s more important than ever that health and care professionals are made aware of CBS. There is a range of support and advice available to help people living with the condition. But patients must first be diagnosed appropriately.”

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Professor Mariya Moosajee, consultant ophthalmologist at Moorfields Eye Hospital, said: “We are working hard to better understand CBS and how it can be managed.

“This includes a study to learn how common CBS is in children across the UK. We are hoping to start a study into deciphering the overall time period affected by visual hallucinations, as this will help us to provide a more accurate prognosis for patients to guide them on how long to expect them to occur.

“We would welcome further research on CBS to increase our understanding and would also encourage clinicians to ask their patients about CBS symptoms regularly.”

Anyone with sight loss who is experiencing visions or hallucinations – or any sudden change in their sight – should seek immediate help from an eye health professional or contact RNIB’s Helpline on 0303 123 9999.

For more information, visit www.rnib.org.uk.

‘Simple but far-reaching’: RNIB launches Holyrood manifesto

National sight loss charity RNIB Scotland is calling on all political parties to build on the greater social cohesiveness that the coronavirus crisis has engendered.

Launching its manifesto for next year’s Scottish Parliament elections, the charity’s director James Adams said: “The next Scottish Parliament will convene in a changed world. A world forced to re-evaluate things previously taken for granted, in which everyone has been made more aware of how dependent we are on each other.

“‘A Vision for the 2020s’ sets out simple but far-reaching steps that can create a more inclusive Scotland for blind and partially sighted people. Let’s seize this opportunity.”

The manifesto is calling on the next Scottish Government to launch a new campaign to emphasise the importance of regular eye examinations in preventing sight loss. Over 178,000 people in Scotland currently live with significant sight loss but this could potentially double if steps aren’t taken to contain it.

The manifesto also wants Ministers to report annually on the attainment figures for blind and partially sighted school pupils and train more specialist teachers as a matter of urgency. It highlights that only one in four blind and partially sighted adults are currently in paid employment.

‘Shared spaces’ schemes – where pedestrians and vehicles occupy the same level area – should be scrapped, the manifesto says, and a nationwide ban on pavement parking and advertising boards implemented.

People with sight loss claiming the new disability benefits devolved to Scotland should not have to undergo periodic reassessed if there is no realistic prospect of their condition improving. Any benefits awarded should cover the, often significant, additional costs of living with a visual impairment.

The manifesto is also calling for all public information to be available in accessible formats such as braille, large-print and audio, and for alternative voting methods to ensure people can cast their ballot independently and in secret.

Mr Adams said: “We want a health service that prevents avoidable sight loss and helps people come to terms with it when it isn’t.

“Education that helps every child reach their full potential, and employers who better understand what people with sight loss are capable of.

“Information that’s always available in alternative formats and public transport that’s always accessible.

“And we want our streets and thoroughfares to allow pedestrians to walk safely and without obstacles.

“Today’s coronavirus crisis has exacerbated many of the problems blind and partially sighted people face. But it’s brought to the fore, too, some of the best instincts of our society. That generosity of spirit can be the spur for a new deal for people with sight loss and other disabilities.

“Let’s make that one lasting legacy of the parliamentary term ahead.”

* www.rnib.org.uk/scotland

Awareness week warns of ‘ticking time-bomb’ of preventable sight loss

Concerns are being raised that the coronavirus crisis may lead to a ‘ticking time-bomb’ of preventable sight loss if people neglect eye-treatment or regular check-ups.

A drive to emphasise the importance of maintaining eye-health and reassure the public it is safe to visit their local optometrist begins at the start of National Eye-Health Week today.

Eye examinations, which are NHS funded in Scotland, can not only detect early signs of sight problems, in time to arrest or reverse damage, but sometimes pick up the symptoms of other serious health conditions such as high blood pressure and diabetes to name just a few.

One woman visited an optometrist at an Emergency Eye Treatment Centre after experiencing blurred vision then sight loss in one eye, and was referred to hospital where she received potentially life-saving treatment for a brain aneurysm.

Another patient was referred to hospital after his optician investigated a shadow on his retina – he was found to have suffered a mini eye stroke, and by chance during his tests kidney cancer was also detected before it metastasised allowing him to be referred for vital treatment.

During National Eye-Health Week, Optometry Scotland and national sight loss charity RNIB Scotland are joining forces to boost the eye-health message.

David Quigley, chair of Optometry Scotland, said: “Community Optometrists and Opticians practices remain the first port of call for any eye problems and we want to reassure the public that a range of enhanced hygiene measures, including NHS-approved PPE, are in place across practices, enabling patients to seek effective care in a safe environment.

“If you have any concerns whatsoever about your eye health, or you’re due a routine eye examination, don’t delay in contacting your local optician.  We are open and ready to help.  It’s important not to turn up without an appointment so please make sure you call in advance.”

RNIB Scotland has produced a series of photographs of iconic Scottish landmarks distorted by the effects of common sight loss conditions.

“We want to illustrate the potential consequences of not maintaining good eye-health,” said its director James Adams. “Some people have expressed concern over attending optometrist or eye clinic appointments, or are worried about using public transport to get there. We’ve even heard some people say they don’t want to ‘bother’ optometrists during this crisis period.

“Every survey shows that sight is the sense people fear losing most. And yet we can be surprisingly complacent about our eyes. During National Eye Health Week, we want to remind everyone to take care one of the most precious things we have – our sight.”

During the awareness week optometrists will take part in question and answer sessions on RNIB’s Connect radio station, while Stuart McMillan MSP, chair of the Scottish Parliament’s cross party group on visual impairment, will table a parliamentary motion highlighting the message.

* PHOTOGRAPHS show Edinburgh Castle as seen by someone with age-related macular degeneration, and the Scottish Parliament as seen by someone with glaucoma.

Social Distancing and Sight Loss

Guide Dogs Scotland calls for public to ‘keep two meters distance but don’t disappear’ – to help those trying to social distance without sight 

  • Just 22% of the public ‘completely comfortable’ offering to help someone with sight loss while social distancing is in place.

As lockdown starts to ease and Scotland anticipates fewer restrictions around travel and socialising, the charity Guide Dogs Scotland reports that lockdown being lifted doesn’t mean greater freedom for everyone.  

Guide Dogs Scotland has highlighted a new set of challenges for people with sight loss to overcome – with social distancing measures limiting independence and increasing isolation.

Guide dog owner Jonathan Attenborough (above) from Perth explains: “Social distancing is the most challenging aspect for me in the whole Covid-19 situation. Not being able to socially distance is a major challenge to my independence and keeping myself safe. 

“I’m less confident getting out and about than I was. Now that lockdown is lifting, other people are trying to get their life back to what it was, but it’s a whole new world for people with sight loss. It’s a lot for us to adjust to and it would really help if people have an awareness of how they can play their part.” 

Research conducted by the charity in the first week of June found that just 22% of the UK general public would feel ‘completely comfortable’ offering to help someone with sight loss while social distancing measure were in place.

Reasons for a lack of comfort amongst this group included not knowing how to help from two meters away (50%) and being concerned about making physical contact (37%). 

These concerns are valid – the support people with sight loss have previously relied on, such as sighted guiding which can involve taking someone’s elbow, is not compatible with social distancing. This has left people with sight loss concerned about accessing essential services such as supermarkets and public transport. 

The research also found that although 78% of GB adults understood that those with sight loss would face additional challenges while social distancing, 65% hadn’t considered this prior to taking the survey.  

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To help combat the increasing isolation felt by those with sight loss during lockdown, Guide Dogs is launching a campaign called ‘Be There’, which gives guidance to encourage the public to feel confident in their ability to offer support whilst maintaining social distancing: 

1 – Keep your distance, but don’t disappear – People with sight loss may find it challenging to social distance, so if you see someone with a guide dog or a long cane then you can help them by making sure you keep 2m away, but that doesn’t mean you can’t also offer your help.  

East Dunbartonshire guide dog owner Deborah Roberston said when other people have said hello or offered support, it’s been helpful to her and guide dog Rye.

 “I do feel more vulnerable going out with it being so much quieter around me, it can be disorientating and I am less confident getting out and about than I was,” said Deborah. “I’m a confident person but I feel more vulnerable out now – when I do hear footsteps I get worried that the person might be coming too close to me, or I might be going too near them. 

“People in the neighbourhood who know me, know it’s okay if they let me know they are there and that they’re stepping out of the way.” 

2 – Say hello and offer your help – Simply by letting someone with sight loss know you are nearby; you are giving them the opportunity to ask for any help if they need it. People often feel unsure about their ability to help someone with sight loss, but their request could be a simple as finding out where a shopping queue starts, or if there is a safer place to cross a road. 

West-Lothian guide dog owner Monica McGill said social distancing measures is making the prospect of shopping a daunting one for her and guide dog Sadie. 

“The thought of going out shopping is very challenging,” said Monica. “I’m told that every shop has put visual signs on the floor – I would have a very hard job following that and where I am in the shop in terms of finding specific things. 

“If staff were on hand to provide verbal assistance, and feel confident in speaking to someone with sight loss, it would be a great help.” 

3 – Describe the scene – We’ve all had to adapt to unusual sights during lockdown – people standing apart in long lines outside of supermarkets for example. But those with sight loss haven’t always witnessed this to the same extent, which can be isolating and confusing.

By describing what you can see to someone with sight loss, you can help them to understand the environment and navigate accordingly. 

Guide dog owner Jonathan Attenborough explains: “I don’t always know there is a queue because my dog Sammy takes me to the door of the shop, not the end of the queue. Shops have introduced visual indicators and one-way systems and if you can’t see they’re a major challenge.” 

As part of a separate survey, people with sight loss had previously told Guide Dogs that concerns about travelling once lockdown restrictions begin to be lifted included their ability to social distance whilst using transport (84%) and access to support whilst using transport (61%). 

Guide Dogs Regional Head of Operation for Scotland, Wendy Rankin said: “Lockdown being lifted isn’t the start of greater freedoms for everyone. In the past couple of months, we have consistently heard that people with sight loss are concerned about social distancing – even the most confident are lacking confidence in the new environment.

They are concerned that people will avoid them and be less willing to help and have told us that not knowing what the new environment looks like is making even doing normal routes a stressful experience. 

“In addition to informing the general public how they can help, we’re also asking the Scottish government, transport operators and business leaders to work with us and the wider sight loss community to ensure that the communities we’re creating in the “new normal” are inclusive communities for everyone, including people with sight loss.” 

For support or further information, please visit www.guidedogs.org.uk.

Charity responds to coronavirus with specialist support for people with sight loss

The Royal National Institute of Blind People (RNIB) Scotland is offering support to people affected by sight loss in Scotland after unprecedented changes to everyday life take their toll.

The current social distancing and self-isolation measures can be particularly difficult for registered as blind or partially sighted people in Edinburgh.

In response, RNIB has ramped up telephone and online access to its Sight Loss Advice Service – which offers emotional support and practical advice to blind and partially sighted people and their families.

The service is providing information on a range of issues affecting people with sight loss during this national health crisis.

RNIB’s Sight Loss Advice Service is available to anyone concerned on 0303 123 9999 between 8am and 8pm on weekdays, and between 9am and 1pm on Saturdays.

Advice is also being updated online at https://www.sightadvicefaq.org.uk/independent-living/Covid-19

RNIB Scotland’s Eye Health Liaison Officer service, which is normally based in the Princess Alexandria Eye Pavilion, is also available over the phone to offer practical advice on living with sight loss and emotional support.

During these challenging times, information is vital. In response, we are ramping up our support and services to ensure blind and partially sighted people get the help they need.

We urge anyone in our community who needs us to call our Helpline on 0303 123 9999 or email helpline@rnib.org.uk.