The big picture on sight loss

Post date: 
Thursday, 12 March 2015

RNIB Scotland is running a series of linked Vision Champion projects that include stroke, autism and dementia. Radhika Holmström talks to some of the people involved in the training and development programmes.

Sight loss can be particularly difficult to handle for people who have additional needs. RNIB Scotland has been tackling this with different programmes for raising awareness among carers and staff, preventing avoidable sight loss and getting vision issues permanently built into service users’ care plans. The basic model underpinning all these is training in general visual awareness, followed by developing vision champions who take on sight loss as a specific responsibility. But each programme has fine-tuned the model to its client group.

Learning disabilities

The Health Inequalities project, funded by the Scottish Government, is a two-year programme being run in partnership with Greater Glasgow and Clyde Health Board for staff working with people with learning disabilities.
 
People with learning disabilities are particularly prone to sight loss and the effects can be very difficult to deal with. Joanne Dick is the Project Development Officer and has two main roles: assessing people in their homes herself and rolling out training for staff.
 
“I think one of the main problems with sight loss is that it’s either always been there – so the individual themselves doesn’t think there is a problem – or the changes are really gradual, so that the person doesn’t notice, and their behaviours also change very slowly,” she says.
 
“We provide vision awareness training for larger groups to try to get people aware of those subtle changes. As part of that, we’re trying to give them more understanding of the ways people can lose their sight and the way this may affect their behaviour. We try to explain what someone’s vision will be like without their glasses, to encourage staff to get people wearing their glasses, even if they find it uncomfortable to start with. We also make practical suggestions like colour and contrasts and guiding techniques. People will come back and ask for advice later, as well.
 
"The next step up from vision awareness training is the vision champion training, enabling smaller numbers of staff to support someone through an optician visit and get the resulting information written up as part of their care plan. They’ll refer more complex cases back to me, so that I can look at the information and give the opticians a better picture of the person in advance. We have five already and we’re aiming for up to 25 more. Eventually, we hope they’ll become the go-to people in the area for advice and information.”

Dementia

Dementia is becoming an increasing threat, as the population ages: it affects 88,000 people in Scotland at the moment, and the numbers will obviously increase. To address this, the Scottish Government is funding another two-year project to train vision champions in addressing dementia across six areas of Scotland that cover Glasgow, Edinburgh and the Lothians, the Borders, Ayrshire and Arran, and Fife.
 
“Dementia itself can impact on the vision,” explains June Neil, UK Training and Development Manager (Older People with complex needs). “There can be difficulties with visual processing – things like judging the height of kerbs – and also with colour contrast and sensitivity. If you talk to anyone in a hospital, they’ll say that nobody ever sees mashed potatoes on a white plate.” Added to that are the possibilities of visual hallucinations – which could be the result of dementia, sight loss (Charles Bonnet syndrome) or possibly both.
 
As with learning disabilities, the effects of sight loss may be interpreted just as “challenging behaviour”, especially if they develop gradually. However, unlike learning disability, the progressive nature of dementia means that staff and carers are up against a time limit. “If someone with dementia needs a cataract operation, they need it more quickly,” Neil points out – at a stage where the surgery will be easier to understand and cope with.
 
Neil and her colleagues are now hoping to provide a training programme that will skill up people to different levels of knowledge and expertise, while retaining the champions to drive the work. “We’re always trying to promote as much independence as possible, but at some point, the dementia will take over and the main difficulties the person will have stem from their dementia. Sight loss is just a part of that.” Before that stage, however, it is important to get as much quality of life as possible.

Stroke

The stroke programme, which is based in Ayrshire and Arran and also funded by the Scottish Government, is at the earliest stage of all the programmes. “The set up period has taken some time,” explains Iain Kennedy, UK Training and Development Manager.
 
“We wanted to partner with the right people.” In fact, the partner organisation is the orthoptic department in NHS Ayrshire and Arran, where there is already a considerable amount of expertise.
 
Added to this, Kennedy and his colleagues realised that to make the programme work most effectively, they needed to move away from the existing champions model in some quite radical ways.
 
“Essentially, people who have a stroke go into hospital and then they are referred to the orthoptic department, which means that they already have clinical information before they leave. They are not starting on their eye care journey from scratch – they don’t need champions to take them from the beginning, but they do need support from now on. So, we’ve ensured that the information they get from the orthoptic department is more accessible, and the champions will help them understand it.”
 
The training is also slightly different. The “vision supporters” one-day awareness course will be a very general awareness course for people working with older people in general, and then the champions course – which involves one of the department’s orthoptists – will be for people in the stroke field, including OTs and physiotherapists.
 
Obviously, this way of working is only made possible because vision care for stroke survivors in the area is already good. “This model allows us to look at the journey within the clinical setting – and that means it can provide recommendations to other models,” Kennedy points out. “What it also allows existing staff within this area to do is refresh and skill themselves up if they’re not too up on vision.”

Autism

Stroke, learning disabilities and dementia have all had at least some attention from a sight loss perspective, but there is remarkably little to address the needs of people with autism. “It’s not an area that is thought about very much,” says Janice Bain, Children’s Services Coordinator, who is working on the autism vision champion pilot programme, which involves the charity Scottish Autism and also Napier University. “The researcher attached to the project has been doing a literature review, and she has struggled to find anything that is strictly relevant, even in the US.”
 
Nevertheless, autism is associated with some specific issues, mainly to do with the way people process sensory information, especially in a busy environment. On top of that, many people with autism find having an eye check – an unfamiliar process in an unfamiliar environment – particularly difficult to cope with. This pilot incorporates the same structure and tools as for the other vision champions – a visual awareness training day for a big group, followed by a more intensive two-day vision champion training for a smaller number – but the training itself has an autism focus.
 
A lot of this focuses on making sure that the person with autism is happier to visit the optometrist. This could involve a practice “visit”; and it also involves filling in a form that includes details about their hobbies and interests. That may seem irrelevant, but Bain says it has actually turned out to be extremely valuable.
 
“Optometrists are coming back and saying that this is really useful because it gives them the opportunity to have a friendly conversation about something that completely engages the person – in one case it was about Dolly Parton. And, importantly, it also relaxes the optometrist because they too are engaging not with a ‘person with autism’ but with another person who’s talking about a topic that interests them.”
 
She and her colleagues are building on this “autism-friendly optometry” project, with the aim of ensuring that optometrists know more about autism and how to work with people with autism.
 
“In the next phase of the project, we’d like to go into far more depth and detail on the issue of visual processing for people with autism,” Bain adds. “We all see the world our way. We can’t compute that someone else might see it differently, and particularly for someone with autism. They’re not flagging up that they may have a problem, because that’s just how the world is for them.”
 
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