Select Committee on Science and Technology Written Evidence

Memorandum by Mrs Dorothy Morgan Evans

  I suffer from progressive visual impairment due to macular degeneration. My experience during the past two years has demonstrated the difficulties arising from the fragmented nature of the services that are theoretically available to the visually handicapped and the consequent problems in accessing them. Responsibilities are split between statutory authorities (hospitals, social work), private practitioners (consultants, opticians) and voluntary bodies (RNIB, local blind welfare societies, societies devoted to specific visual handicaps eg macular disease, glaucoma). These agencies vary in competence and helpfulness.

  The difficulty for people newly affected with visual difficulties is how to access the information needed to restore some semblance of normality and independence. What is needed is something more practical than pious invocation of more communication and cooperation between all concerned. From a personal point of view, a discussion with somebody knowledgeable about what is available and suitable at the point of diagnosis would have been of great benefit. As it was, my initial and only contact with the Social Work Department was to receive a bewildering number of forms (that I could not read) through the post, though admittedly the accompanying letter did offer me a chance to talk about my "feelings" which might have been helpful to some people. But my need was for information about how I could manage life without being able to write or read. And if there is any single definitive source of information I have still not found it. In fact, after two years of delving and ferreting about I am probably it! There are amazing devices available and my independence has been secured because I have one way or another discovered and bought them. But most of the information I managed to obtain eventually came from retailers of the equipment who were very helpful but are not perhaps the most disinterested of advisers.

  Which brings me to another "what could be done" point. The necessary equipment is expensive. I depend mainly on three principal tools: an adaptation for my computer which enables me to enlarge and manipulate the screen; a CCTV which allows me to enlarge printed matter up to 16 times; and a sort of electronic telescope which can also be adjusted for reading. I have spent over £5,000 on these gadgets, which to me are as essential as is a wheelchair for those without physical mobility. There is one concession—articles exclusively for the use of the blind are not subject to VAT—but there are some grey areas where the VAT man argues that others could use the devices and so exemption could be withdrawn. In any case the fact remains that the equipment is costly and I wonder if it needs to be. For instance, the oversize keyboard I am using cost £164 (though I did manage to reclaim the VAT after a struggle). It has occurred to me that if the cost cannot be brought down to a more reasonable level could not some national scheme of renting the more expensive items be devised? No doubt the notion of providing physically handicapped people with their own mobility cars seemed equally far-fetched at one time.

  I suppose that in the end it all comes down to what most afflicted people want to alleviate their various conditions—what do I need? where is it? how can I get it?

September 2004

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