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24 September 2014
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Changing my perspective
Helen Smith's remarkable story
Helen Smith during a course
Helen is leading the way during training in Torquay

Helen Smith from Tiverton has been on a remarkable seven year journey that has dramatically changed her outlook on life.

It began when she lost her sight and was left isolated and vulnerable with no-one to turn to for help.

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Folk.us - news, research

RNIB - Royal National Institute of the Blind

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FACTS

Blind' means a high degree of vision loss, ie seeing much less than is normal or perhaps nothing at all.

So most blind people can see something but not very much, even if they wear glasses.

Partial sight' is a less severe loss of vision.

Partially sighted people can see more than blind people but less than sighted people.

The Office of Population, Censuses and Surveys survey of disability (1988) identified over 2 million adults in Britain with a 'seeing difficulty'

The most common myth is that all blind people live in a world of total darkness.

In fact only about 18 per cent of blind people are classed as totally blind and the majority of these can distinguish between light and dark.

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For Helen, life changed forever when haemorrhages were discovered behind her eyes.

As a result she lost her sight and her independence. But thanks to her own determination that has all changed now.

Here, Helen, tells her amazing story.

"Seven years ago I sat in an examination room in the West of England Eye Unit and listened to a Consultant say, "I'm very sorry. There is nothing we can do to either improve or save your sight.

"You can now be registered blind, which will ensure that you get all the help you need and we'll see you again in two months' time."

After a few moments to pull myself together and wipe away my tears, my husband and I left the hospital having had no offer of information, emotional support or any idea of how we were going to cope.

Listen

We were devastated. As we approached the exit doors a nurse, who had run after us, gave me a phone number to ring when we got home.

Throughout the journey, I felt like I was dangling over the edge of a cliff by a thread, with nobody to save me.

I held on tight to the phone number - my lifeline. As soon as we got home I made the call and told the very sympathetic person on the receiving end my news.

My name and address was recorded and the lifeline was severed by the words "thank you for calling, we will send someone to see you in six weeks' time."

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We had only recently moved the 80 miles to Devon, where we had no relatives and hadn't had time to make friends.

We live above a shop in the centre of town and therefore have no neighbours.

When my husband left for work and our two children for school each morning, I was left completely alone all day with my panic, my fear and total helplessness.

Had I not been so desperate that I tearfully demanded help from the Social Services a few days later, I would have waited eight weeks for the practical help I needed - and actually waited six months for financial support.

It took a full year before it felt like I was coping and three years before I truly felt back on track.

It was at this time I was introduced to an organisation called Living Options Devon.

I attended some of their User Consultation meetings, where I met many other visually impaired people who all had the same story of isolation, vulnerability and fear to tell.

I soon realised that the feeling I had experienced had nothing to do with not living near family, friends or neighbours.

It made no difference whether you lived alone or with family, in the town or country or whether you were 25, 85 or any age in between.

Helen Smith delivering a course
Helen - telling it like it is

The same bewilderment and hopelessness was experienced as a direct result of being left unsupported by health and Social Services systems.

Living Options Devon set up the Visual Impairment Research Team. The team, with support from Living Options and Folk.us, are investigating people's experiences on receiving a diagnosis of permanent sight loss.

The findings will be produced in a written report at the end of 2002 for circulation across the county.

It has been a challenge to say the least, but what I have learned along the way is immeasurable.

As an added bonus, I have met some very interesting people and made many friends.

I have become involved in other projects and by way of influencing changes from another angle I completed an accredited training course and have been delivering Disability Awareness/Equality Training to healthcare staff for the last year.

I am probably more confident now than I have ever been and I have never felt more "equal".

If anyone had told me that I would be doing any (let alone all) of these things in a few years' time, as I sat wondering how I was going to make it through the next 24-hours on that awful day back in 1995, I would have said "Never in a million years - not possible!"

Now, as I write this, I can foresee a day in the not too distant future when, as a direct result of a research project occupying a few pages of a medical journal, people with permanent sight loss will no longer be left in a void of despair.

In the report will be a list of the researchers. One of the names in that list will be mine - me, Helen Smith, wife, mother, registered blind person………….wow!"

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