Despite the increasing numbersof people suffering from serious eye conditions there is still widespread variation in access to support and rehabilitation, reports

There can be few more isolating experiences than discovering that you are gradually losing your sight.

Not only do you have to cope with the almost primal fear of living in the dark, but you also have to contend with the preparations for the day when you lose the last of your vision. But to add to the list of problems, the evidence suggests that this group of people are not getting the support or counselling they need - despite the fact that they are one of the groups most vulnerable to the risk of social exclusion.

Learning to cope is a difficult experience often compounded by uncertainty about one's professional future. The RNIB says that out of the 115,000 blind or partially sighted people of working age in the UK, three out of four are not in paid employment. Of the 4,000 people in employment who lose their sight each year, 25 per cent "are quickly forced out of work".

Siôn Simon - the 33-year old Labour MP and associate editor of the Spectator - recently revealed that he is suffering from the incurable inherited condition, choroideremia. He says that he worries about how he will function professionally when he finally goes blind. Advised not to rely on technology, but to learn Braille, Simon says that the prospect "fills me with dread; but a purely lazy one"

Amongst the other problems that people with visual impairments have to contend with is poor labelling. The RNIB research estimates that one in five people are potentially at risk because they cannot read the small print on food labels or medicines. RNIB Director, Ian Bruce, says it is a significant problem: "The dangers inherent in this 'information famine' are clear," he says. "It is not only people with sight problems who face the potential danger and daily frustration of taking the wrong dose of medicine or eating food long past its sell-by-date. A surprisingly large proportion of the general population, particularly older people, also struggle because they can't easily read small print."

Indeed a survey found last year that even eye clinics were guilty of this when arranging appointments, with the vast majority of patients' letters written in normal, small type. The RNIB survey found that of the 86 per cent of people who received their letter in the standard size, 26 per cent needed to ask someone else to read it for them.

Once in the clinic itself 61 per cent of people were not shown to their seats. Forty-six per cent received no explanation of clinic delays and only 19 per cent were warned beforehand that the dilation of the pupil commonly experienced as a result of the examination could temporarily leave their vision severely blurred.

Perhaps the most disturbing finding of all was that of the 87 per cent who were told the name of their eye condition, only 40 per cent were given information about what it meant and how it would affect them. And just 37 per cent were given information about local services which can provide equipment and support following diagnosis and treatment.

The lack of information being provided has left patients feeling "vulnerable and scared", compounding their anxieties.

And these feelings are not confined to adults. Siôn Simon was diagnosed at 11 but not told by his parents until he was 17. "For what it is worth," he says, "should any"parent be considering similarly withholding information from a child, I strongly believe such behaviour to be misguided, though I understand why it might seem kind."

André, 26, was diagnosed with the incurable inherited condition Retinal Pigmentosa as a child: "I have had RP since I can remember, so unlike a colleague of mine a few weeks ago, I never had to be sat down and told the 'bad news'. When I was diagnosed with the illness at an early age, it was suggested to my mother that I should learn Braille, but it has turned out that my condition has stabilised over the years and that except for night blindness - and the fact that I can't drive at night - I am functioning normally."

Ageism also plays its part in the quality of treatment patient's receive. Adeline Warham, 88, says her concerns over her failing vision are regularly dismissed by both her GP and optician. "They say, 'what do you want me to do about it? It's your age, your eyes are worn out.' I don't think it is fair at all. They wouldn't have said that to the Queen Mum."

Although she has found the local library's choice of large print books "fabulous", she has not received any advice or support on adapting to a life of increasingly poor vision. "They just tell you to get on with it," she says.

But the most difficult thing to accept has been the feeling of "not knowing what I'm missing. It's what I don't see, and what I'll never know", she says.

The Institute to Ophthalmology in London has a dedicated centre specifically for research into vision rehabilitation. The institute says that "help for the visually impaired can be the difference between managing at home or being totally dependent upon others". With an ageing population, it warns, an increasing number of people will "literally be living out their lives in twilight".

Age-related macular degeneration (AMD) is now the leading cause of blindness in the western world and glaucoma is the leading cause of irreversible blindness worldwide. "The startling truth is," the institute says, "that nearly everyone who lives long enough will have either AMD or glaucoma". The current number of people living with AMD alone is estimated to be up to 500,000.

Going blind, it says, is not the commonly perceived world of total darkness but rather a loss of central vision (AMD) or tunnel vision (glaucoma). Only four per cent of the visually impaired have no sight at all. Amongst the differing visual impairments people suffer is a loss of visual acuity - difficulty in reading is the most commonly cited complaint - and also a loss of contrast sensitivity (which enables you to get about safely), stereovision and sensitivity to motion (the ability to negotiate such things as steps).

The institute conducted research on the differing degrees of ability amongst the visually impaired in negotiating everyday tasks, and assessed their performance to determine which coping strategies work best. For instance the institute has found that AMD patients with a loss of central vision can read better if they look off to one side of the word. Early findings have revealed that most people have a bias to looking left when they would actually read more satisfactorily if they focused below or to the right.

The Guide Dogs for the Blind Association's School of Vision and Rehabilitation Studies also works with the visually impaired to help them to develop such strategies to deal with day-to-day domestic tasks. The school uses a variety of methods from tactile labelling to gadgets such a liquid-level indicators (to tell you when a cup is full).

But despite the increasing numbers of people suffering from serious eye conditions there is still widespread variation in eye health care across the country. A report by the Patients' Association earlier this year, NHS Ophthalmology Services: A Survey of UK Health Authorities and Health Boards, found that 25 per cent of health authorities offered no treatment for AMD whatsoever. And whilst the official waiting time target from referral to actually seeing a specialist is supposed to be 13 weeks, the Patient's Association found patients waiting up to six months. The Chief Executive of the Patients' Association, Mike Stone, said he was "alarmed” by the situation and called for rapid government action.

Since moving to London, André's optician recommended that he have his eyes checked out by a specialist and suggested he visit his GP to get a referral. "But I found the whole session at my GP quite taxing," says André. "It took me a while to explain to him that I have not recently been diagnosed with RP, and therefore I did not have a letter from the opticians. All I was doing was acting on my optician's suggestion. It took me a further 10 minutes to try and justify why I needed to see a specialist. The GP was implying that if my eyesight has not worsened in the last few years he couldn't see why I should go see a specialist. So much for preventative medicine."

To date, André has not seen a specialist or been offered any help.

However the picture is not all bleak, he says. A colleague - who was recently diagnosed with a more aggressive version of RP - was offered counselling, and even the opportunity to sign up for disability transport, picking him up at home and dropping him off at work. "He said his experience of the treatment, level of information and support provided at the eye hospital was very satisfying. I only hope I can say the same."