Every day in Scotland, ten people begin to lose their sight, but only a tiny percentage will be offered counselling, despite the devastating impact it can have on people's lives.
This alarming fact is part of a major new campaign being launched today by the country's leading sight loss charity, RNIB Scotland. 'Lost and Found' aims to expose the bleak reality for thousands of people.
"While it is often assumed that if you start to lose your sight a range of services swing into action, in most cases it can take months, and even years, before patients are introduced to support services," said director John Legg.
The campaign will share the personal stories of people across the country dealing with the emotional and practical impact of losing their sight. Although many compare the impact of losing their sight to bereavement, the campaign says there is a widespread lack of information that leaves many isolated, with no idea of where to find help.
In fact, after first diagnosis, a shocking 23 per cent of people losing their sight leave without even being certain of the name of the condition that caused their sight loss.
Mhairi Thurston from Dundee was unexpectedly diagnosed with retinitis pigmentosa after a routine eye-check at the age of 40. The condition affects the light-sensitive cells on the retina at the back of the eye, causing tunnel vision and sometimes total sight loss. "Although my physical needs were catered for, in terms of offers of low vision aids and rehabilitation, it felt as if my emotional needs were overlooked," she says.
"I remember just after diagnosis, I had lost my job, my income, my identity as a teacher, my driving licence, my social network, my independence. Without my salary we had to move to a smaller house and I had sunk into a deep depression, whilst struggling to look after a baby and two toddlers. I ended up on anti-depressants."
To improve what is on offer, RNIB Scotland has been working with the Scottish Government to develop a network of emotional and practical support services at the point of diagnosis.
"When people lose their sight, they lose more than their ability to see, they can lose much of their life as they once knew it," said Legg. "It's left to organisations like RNIB Scotland to plug this gap. But at the moment we can only help one in three people facing this enormous life change.
"In Scotland it is estimated that over 12,000 people each year require some level of emotional and practical support, and a further 18,000 people require sign-posting to support services.
Across the UK, the campaign has already won celebrity support. Sue Townsend, best-selling author of the Adrian Mole books, has diabetic retinopathy. In 1999 she was registered partially sighted, but her sight continued to deteriorate and she was registered blind in 2001. "Nothing will ever prepare you for not being able to see," she says. "It's as simple as that. I'm not going to pretend it's not a huge loss, in fact, it's a calamity.
"One day the registrar said to me 'Did you drive yourself here?' I said 'No.' He said, 'Good because you wouldn't be able to drive yourself back. You're partially sighted.' That was it. I got up, walked out, made another appointment and I was shocked. I can still remember the feeling which was wanting to ask an awful lot of questions and not knowing who to ask."
Other high profile ambassadors have pledged their support for the campaign, including Twiggy, Duncan Bannatyne, Bear Grylls, Raymond Blanc, Samantha Bond, Tessa Sanderson, Dylan Hones, Nick Ross, Nick Faldo and Adam Hart-Davis.
John Legg continues: "We're asking politicians, decision-makers and the general public to consider what they would lose from their lives if they lost their sight. Personally, I'd miss lots of things, but at least I know where to go for the information and support I'd need. With the right support, such as our Vision Support Service at Edinburgh's Royal Alexandra Eye Pavilion, people can find their lives again.
"But currently RNIB Scotland can only reach a fraction of those needing help. We urgently need improved health and social care services that don't leave people isolated and frightened."
Visit www.rnib.org.uk/lost to tell RNIB what you would lose if you lost your sight and to find out more about how you can help.
Press Release issued: 16 September 2009.