When Amy’s vision began to deteriorate it was a very frightening and anxious time for her. The cause of her sight loss was unknown, leaving her with many unanswered questions and uncertainty about life, not least regarding her ability to maintain her independence and her career as a primary school teacher.
“It was not clear if the sight loss was permanent or temporary. It was very much wait and see and hope for the best. Because I had no definite diagnosis I was left in limbo and did not know what would happen. I feared for my job and future,” Amy says.
Every day 100 people like Amy start to lose their sight. For some it’s a gradual process; for others it happens overnight. For all, it is life-changing and can have a huge emotional, psychological and financial impact.
There are almost two million people in the UK who are living with sight loss. Just under half of them say they feel cut off from people and things around them. Meanwhile, more than a quarter of registered blind and partially sighted people report that the main reason for leaving their last job was the deterioration of their eyesight.
People experiencing sight loss are also more prone to accidents – roughly 47 per cent of all falls sustained by blind and partially sighted people could be attributed directly to sight loss, and its costs the UK about £57m each year to treat these falls alone, according to the Royal National Institute of Blind People (RNIB).
Sadly, despite the impact that sight loss has on both those affected and the UK economy, we give inadequate attention to individuals to ensure they understand and can cope with their condition.
In all too many cases, patients are diagnosed and left to fend for themselves. For one thing, nearly a quarter (23 per cent) of blind and partially sighted people leave the eye clinic not knowing, or unsure of, the name or nature of their eye condition, something that causes much distress and confusion. Others may be given basic information and advice but are then left to manage their condition on their own.
Frequently, this lack of support continues post-diagnosis, too. Roughly 20 per cent of people say they do not recall receiving any visit from social services in the year after they registered as blind or partially sighted, and only 23 per cent were offered mobility training to help them get around independently.
“This is a hugely traumatic and emotional time and many people are left thinking their life is over,” says Lesley-Anne Alexander, chief executive of RNIB. “What should happen is that someone scoops you up and looks after you, guiding you through and making sure you have both the emotional and practical support needed. Unfortunately, eye clinics are full to capacity and they don’t have the resources to act as social services to everyone.”
Ophthalmologists are certainly under pressure. In 2011/2012 the number of outpatient appointments for eye departments totalled 6.8 million, making it the third largest hospital service in terms of attendances. Medical staff are under huge strain to diagnose and treat patients, and most are left without sufficient time and resources to help them manage their condition and get access to support.
More than 80 per cent of eye doctors across England recently told RNIB that their department has insufficient capacity to meet present levels of demand. Meanwhile, the charity has also found that only 216 of the 454 eye clinics in the UK have any type of support staff available at all.
This pressure will only get worse as the number of people with sight loss increases. It is expected that by 2020 2.3 million people will be affected, rising to almost four million by 2050. Most of this increase can be attributed to an ageing population, which brings problems such as increased loneliness and isolation – and, of course, additional costs.
To ensure that sight loss has minimal impact on individuals and the economy, a more holistic approach to eye care is needed, says RNIB’s Alexander.
“Government and the NHS have been rationing eye treatments, which means many people lose their sight unnecessarily and often have to move into residential homes. Yet a one-off sight-saving treatment costs much less than the fees associated with living in a care home year after year,” she says, emphasising the financial savings that could be made through better integration of health and social services.
Critical to successful joined-up working, she adds, are sight loss advisers or, to give them their full clinical title, Eye Clinic Liaison Officers (ECLOs).
Trained in responding to the emotional and practical demands of people experiencing sight loss, ECLOs work closely with patients, carers, and medical and nursing staff, to ensure that those recently diagnosed have the information and support they need to understand their eye condition and maintain their independence. This may involve helping patients comply with eye treatments, signposting to other local and national services, or helping them get the equipment they need to maintain their independence, such as audiobooks, walking sticks and computer software.
Sight loss advisers bring far-reaching benefits. About 94 per cent of people supported by these eye-care professionals say they are now aware of the services available to them, while 77 per cent say they understand more about their eye condition.
Amy the primary school teacher provides just one example of the lifeline that ECLOs offer. Thanks to her sight loss adviser, she was able to access several useful services, including a Low Vision Clinic, which provided her with a magnifier.
“I can’t be without [my magnifier]. For the first time in months I had hope and a way of enabling me to do things independently, without having to rely on others, and that was thanks to the sight loss adviser,” Amy explains.
However, despite the value this vital service offers, the system is under threat from short-term and complex funding arrangements. For example, RNIB and Action for Blind People are contracted to deliver one in four sight loss adviser services around the country. Of these services, 62 per cent depend on funding that will end in or before April 2015.
And of the remainder, four out of five are employed on contracts that are due to end in 2015.
It is a similar picture for other providers and leaves many vital services hanging by a thread. It is not only RNIB which is concerned about the precarious financial situation. Medical professionals are, too.
“It is eminently obvious to all of us that the service provided by the sight loss adviser or ECLO post is invaluable to patients,” says Dipak Parmar, a Harley Street consultant ophthalmic surgeon. “Withdrawal of this will have seriously adverse effects on the care of patients with sight loss.”
Meanwhile, other experts have described the introduction of sight loss advisers as “the single most positive step in healthand social-care integration in recent years”. The resulting emotional, practical and financial support and the important signposting to “self-help” have transformed the lives of many people with either recentonset or established visual impairment and disability, says Andy Cassels-Brown, consultant ophthalmic surgeon/community eye health specialist at St James’s University Hospital in Leeds.
Blind and partially sighted people themselves grasp the value of sight loss advisers. Over the past 18 months RNIB has been consulting on its new strategy by asking its members and other blind and partially sighted people what they need and want to live an independent life. Besides requests for a more inclusive society, increased benefits and help with maintaining education and employment, a critical wish was that more support be made available at the time of diagnosis.
“Blind people said to us, ‘I wish I’d known about you sooner. If only you’d been in the clinic,’ ” Lesley-Anne Alexander says.
As such, “being there” is a key element of the RNIB Group’s new approach. Working with its partners, including UK Vision Strategy, it aims to ensure that blind and partially sighted people get the best advice, support and services in order to make the most of their lives at the time when they need it.
Importantly, the charity wants the government to take notice of the personal and economic value that sight loss advisers offer, and to make them an integral part of the NHS. Better service provision, both at the time of diagnosis and onwards, is crucial if blind and partially sighted people are to be treated as equals.
After all, as Alexander points out, by being there when people need help and supporting independent living, not only can we make every day better for all those affected by sight loss, but it makes sense for
the rest of society, too.