Lightening the dark days

Jean Benjamin is rarely at home. "The lady of the house is unobtainable!" screams a raucous voice on her answerphone, as a howling gale rages in the background. "Just let your fingers do the walking and I'll call you back later."

When I finally track her down, out shopping with friends, on Westcliff-on- Sea's main high street, Benjamin, who is in her late 30s, is effusive and warm. But a year ago, she was in a very different place.

"I was a recluse and close to suicide," she says. "My sight went suddenly, triggered by diabetes and the death of my father. Many of my friends dropped me as if I had something contagious."

Benjamin says she had been a bubbly person, but "unprepared for life" and her sight loss was devastating. "I was brought up as a very cosseted, over-protected child. When blindness struck, I went down badly. But fortunately I heard about Cumberlege Intermediate Care Centre."

CICC is a resource centre in Southend, which provides rehab support for people who have just been diagnosed with a range of disabilities including sight loss. Jean lived there for three months. She says she was "retrained in life", relearning things from making her own breakfast, to getting about with a white cane. When she went back home, a care worker accompanied her, living with her until she became fully independent.

Christine Dunn who is a voluntary adviser at the visual impairment resource centre of the Southend Blind Welfare Organisation has been blind her whole life. She says that a lot of people who are first referred are usually frightened and angry, but that they relate to her immediately because of her own sight loss.

"Most of them have been fobbed off by a hospital, who've told them they just have to accept their blindness and cope. They've often lost all confidence and have had little psychological support. They have no idea what equipment is available.

At the resource centre, we're able to tell them there is life after sight loss and how to use their new independent living devices and appliances. The turnaround in how a person is able to change perceptions of their situation can be dramatic."

Yet the situation for blind people across the UK, in terms of emotional, psychological and practical support, can be "very patchy", says Andy Barrick, head of membership and information services at the Royal National Institute of Blind People.

"The support on offer can be a real mess," he says. "It depends very much on where you live. We find a lot of people don't get the help they need."

Just 2% of people surveyed by RNIB had received any counselling when they were first registered blind. The majority had not been offered training to help them cope with daily living skills and tasks, such as cooking, shopping and mobility. Only 12% had had lessons in how to use a white cane to help them get around.

"It's very hit and miss in terms of what is offered from social services," says Carl Freeman, health and social care manager at the Guide Dogs for the Blind Association. He believes that hospital eye clinics, Social Service, GPs and other community health service should be working together more effectively.

"Not all local authorities have rehab workers. Ophthalmologists can be bad at giving the impression that once you have eye disease, nothing more can be done. While it might be true that nothing can be done medically, a lot can be done to help people adapt to living with visual impairment."

Not surprisingly, there is a high incidence of depression when people first lose their sight. The figures are startling: 180,000 blind and partially sighted people rarely or never go out on their own. Forty six per cent of people with sight problems give up hobbies and interests because of their sight loss.

Liz Frankland, from Tickhill in South Yorkshire, who lost her sight when she was 12, says that it's easy for sight loss to lead to isolation, exclusion and poverty. The most frustrating thing for her, despite the fact that she has teaching experience and a degree in French and linguistics, is that she can't get a job.

"There certainly isn't enough being done when it comes to employment. Employers are far too aware of what you can't do, rather than what you can do," she says. "We're actually a very skilled, capable workforce, able to do far more than the traditionally expected blind pursuits such as piano tuning and basket weaving."

Until October 2007, Frankland says her Braille computer - a word processor with a Braille display - allowed her to cope well. When the computer broke, she discovered it was impossible to purchase the part required to repair it as the machine was obsolete.

A new one costs more than £2,000. "If I'd have been in full-time education or employment, it would have been paid for," she says. "But 66% of blind and partially sighted people of working age are not in that situation. Without it, life has become so much more difficult for me. I feel stuck.

"What would help blind and partially sighted people enormously," she says, "is if the local authority could provide a 'buddy' or mentoring-type system - a person who'd be able to provide immediate support when someone is first diagnosed as blind, and who could give holistic information and help, based on that person's individual needs."

Jean Benjamin agrees. She believes she's one of the lucky ones in being able to access good services. "I'd like better emotional support and rehabilitation for everyone who loses their sight," she stresses. "My rehab worker and CICC have taught me to be strong and a fighter. The funny thing is that, when I did have good sight, I rarely left home. Now I go out every day."