Newly blind left to cope alone

Posted on: 17 April 2014 by Olderiswiser Editorial

Less than one in 10 patients offered counselling to help them deal with loss of sight.

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Tens of thousands of people in the UK are not being offered the vital emotional and practical support they need when they start to go blind.

Research by the Royal National Institute of Blind People (RNIB) has found that only 218 of more than 400 eye clinics and hospitals in the UK (53 per cent) have any support staff available to patients to talk to after their diagnosis.

A new report (released on Tuesday 15 April 2014) by RNIB, 'Hanging by a thread', also reveals just how precarious funding is for existing sight loss adviser roles as many of the services have no guaranteed funding after April 2015.

Sight loss advisers offer emotional support and practical advice to people who are losing their sight. They help people understand their eye condition and explain how to take treatment that might prevent further sight loss. Based in eye clinics and hospitals, sight loss advisers are a vital link to services such as counselling, workplace support and rehabilitation, so that people can adapt to life with sight loss whilst remaining independent.

The report also highlights that eye clinics are full to capacity, with medical staff under huge strain to diagnose and treat patients. They do not have the time to discuss with patients how to manage their condition and what support is available. Research suggests that nearly a quarter (23 per cent) of patients leave the eye clinic without even knowing the name of their eye condition let alone what their future might look like. Less than one in 10 patients were offered formal counselling to help them deal with their diagnosis.

RNIB is now calling on the NHS and other funders to defend the posts of existing sight loss advisers and is urging the public to sign its petition calling for every eye clinic to have access to a sight loss adviser by 2019 - the end of the charity's new five-year strategy.

Liz Wick, 51, from Sheffield, said: "It changes your life when you’re told 'you're going blind and we may not be able to do anything for you'. When I was first diagnosed I'd just separated from my husband, my son was 14 and I didn't know what the future held for me. I had lots of worrying thoughts. 'Could I be a mother? Could I be a worker? Could I still be a friend to people?' I couldn't cry at home so I used to get into work, shut the door and cry for about an hour to get it out of my system.         

"With hindsight, you think, 'Why didn't you ask more questions about your treatment or about talking to someone?' but all I can say is I just didn't. I suppose I was in shock. To have had someone there, ready for when I wanted it all explained to me, would have been amazing."

Sight loss advisers ensure that patients are referred to local services which can help them adapt to life and can assist with providing accessible information and completing Certificates of Visual Impairment. They can also provide invaluable support in dealing with the psychological adjustment to life as a blind or partially sighted person. The emotional impact of sight loss can be profound. Depression is significantly higher amongst blind and partially sighted people and general wellbeing is considerably lower.

RNIB's CEO, Lesley-Anne Alexander CBE, said: "Every 15 minutes someone in the UK starts to lose their sight but people do not always get even basic emotional and practical support at this critical time. Being told you are losing your sight can be extremely traumatic to come to terms with, and everyone reacts differently.

No one should have to face the prospect alone or without the support they need to help them through the situation. This is why at RNIB we will be focusing our efforts on making sure more people are reached when they need us."

In the UK, 100 people begin to lose their sight every day and by 2050, it is predicted that the number of people affected by sight loss will double to around four million. Demand for eye clinic services which are already under strain will significantly increase. Sight loss advisers can help to ease the pressure on ophthalmic staff whilst helping patients to adapt to a future with sight loss.

Visit www.rnib.org.uk/iamhere to find out more about the campaign and sign the petition to call for more sight loss advisers.

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